The black dog has scurried away! I cannot fathom it but I do embrace it.
I have filled my life with positivity and calm. More, I have eliminated all things negative and bitter. Now, I thought that was all a little holistic and new age; a bit fey and insubstantial and it is if you don’t physically remove those things. So I deleted numbers from my phone, friends from my lists and pointless nick-nacks from my home. I have become the very epitome of relaxed (and I really was pretty chilled before.) When bitterness came to call, I deleted it, unopened. There is no way in. Not anymore.
An old friend at work was the first to say how different I looked, but she couldn’t find the words so hugged me instead… That doesn’t happen often!
On the same day, another friend did find the right words,
“You have your twinkle back in your eyes.”
“Well then, perhaps I’m back…”
“No. You’re different. You’re a new you.”
Hmm, I thought about this; could this be why my depression drifted away so quickly and why people (who know me well) hug me randomly in corridors..? Lord knows, I don’t invite social interaction, yet in the past week I have engaged in more conversations than I have possibly in 15 years.
So, it’s not holistic crap; if you eliminate all the negativity in your life – people, things, memories – you make room. Not room to fill with anything, but room for your soul to shine.
So I can conclude that I am new. And I’m fucking twinkling. Get used to it.
The Battle is On
It’s been a week then and, as predicted, there have been ups and downs as the black dog falls into step beside me.
My down moments are consistent with my usual depression, only with tears. I find this whole crying phase of grief exhausting yet cathartic. I absolutely know it’s doing me good but cannot reason it in my practical head. Having spent my life bottling up my emotions, I now find myself not only with practically zero capacity but also bewildered at the physical pain of it all. When the tears fall they cascade, when the mind drifts it takes me to only the saddest places. The resulting ache that winds itself throughout my entire body is, at times, terrifying and only bed will do. But even there – especially there – I feel vulnerable. With no one to cradle me, I wrap my arms around myself; bring my knees up to my chest and hold tight. In this position, with my head tucked down, I can freely cry. No one can see, no one can hear. Safe.
Please know that not every night is spent thus, maybe once or twice a week normally. But this past week has been trickier. This past week it has been most nights.
On awaking in the morning, I am like a cat. I stretch as long as I possibly can, until my toes reach the bedstead at the bottom. I tense and relax every muscle in my body and am generally smiling. Mornings are my up times!
I think Django is integral to my positive start to the day. I cannot wait to see his ‘smiley’ face, watch his body quiver with excitement the moment I poke my head around the door. He’s generally still sleepy too – utterly beguiling.
Django in the morning is my favourite Django.
I love snuggling with him for an hour or so before I have to get ready and leave for work. The work day varies; ups and downs aplenty. This week has been largely up. There’s been a wood sculptor in, carving woodland scenes into an old, fallen tree trunk. I’ve spent as much of my free time as possible watching him with his various chainsaws – what an awesome job, right? You can almost feed off of his positive vibes! Trees and woodland are my salvation. On Saturday I spent a delightfully soggy hour or so wandering through Pipely Woods with a bouncy Django. There I dwelled on old romantic films, Gabriel Byrne and John Turturro (not the worse way to wile away the time…) Of course there were tears but happier ones. I never walked those woods with Nige – my memories in Pipely are new ones and that is surely the healthiest way forward.
Finally then, I’m at the end of the first week. Harry’s landed himself a full time job and Gabe has started getting the treatment he needs. All three of us are reconnecting and so home feels happier.
Chatting in the playground, waffling on about where I should be and when, a simple question was put to me:
“Do you see yourself starting a new life with someone else – anyone else – in your current home; yours and Nige’s home?”
And the answer? No. No I can’t.
So fingers crossed for Llandrindod Wells and let’s hope that eventually I can feel as at home there as I have done here.
The Black Dog
I’ve been back at work now for just 3 days and I am sinking. I recognise the symptoms and am already anxious about the next 6 weeks…
Things that help are:
- walks with Django
- talks with people who know and love me
- mugs of tea
- trips out – anywhere
I am only writing this because I no longer have anyone to tell. For over a decade Nige quietly got me through all this shit, without ceremony or blame. I have managed alone thus far but I’m a little out of my depth… The signs have been there when you look back at the barrage of blogs in recent days/weeks. And now we have Christmas and other such jolly events – pffft.
It’s all going to be fine though, it’s all under a kind of control. I know what’s happening and I absolutely have the right people around me.
Here We Are Again
One week wasn’t enough.
I ended the last term horribly; mentally fucked and with no sense of achievement, which was the false hope that kept me going for the whole 8 weeks.
Now here we are again.
Emotionally I’ve got the next 5, maybe 6 weeks sorted but it’s that final week, week 7. Within those 5 days, nestled right in the middle, is my wedding anniversary. Now, my brain shrugs and looks baffled at my concern. ‘Really?’ it says, and I concur completely. But last term the weirdest things pushed emotional buttons with unpredictable regularity and I’m thinking that my 26th wedding anniversary will have a bloody huge button.
Now that’s out there – here – wherever, I can concentrate on positively starting the term and successfully getting to week 7. I will try to fill my days and, most importantly, my evenings with love and hilarity. I’ll endeavour to achieve stuff – even if it is just getting dressed on a Sunday.
Right then, it’s an early bedtime for me xxx
What makes some of us sabotage our chance of happiness?
Just a fortnight ago I announced to the boys my Christmas plans. “I’m definitely spending Christmas in Wales boys. I mean I can’t be here…” I started. “But I totally understand if you both want to stay here… I mean, your friends are here…” Seriously, I barely paused for breath, “and besides, I’ll quite enjoy a quiet Christmas with Django.” What??
Two days later, I’m driving alone, on my way back from Bristol. From nowhere, to no one, I say out loud, “What are you thinking? You don’t want to be on your own at Christmas… You’re awful alone! Imagine the loneliness; a new house, new town, no true friends… Really, what is wrong with you?” The clarity that came by saying the words was enlightening. I then thought quietly, to myself, of the injustice I’d done to my lads. I didn’t offer a choice did I? I assumed that they would welcome an excuse to not be part of possibly a very mournful Christmas. Where as, actually, they both need as much support as me.
So although I believed I was acting altruistically, when looked at in another way it was pretty selfish.
Sabotage you see. Either the chance of a happy Christmas or my relationship with the two most important people in my life.
What makes some of us sabotage our chance of happiness then? God knows, but if you don’t learn the lesson then maybe it’s deserved.
I see grief as an emotion to describe the collapse of life.
You lose, you gather, you flee. You flee because if you don’t, you will fall into the same abyss that awaits your past life.
When it is your husband who is lost, the architect of your future so far, you need to take over.
You flee, you build, you heal. You heal because you take all the love bestowed upon you and build a new life. You do this as you flee the ruins of your existing life – the two run parallel.
You have truly healed when your old and new life become one.
I’m almost there.
As all the the newness of the past few months becomes part of me, some overdue readjustments have begun.
I’m starting to feel like the pieces are falling properly now.
I’m starting to believe that we can do anything.
I have always dreamed and always remembered them in the morning. Then, somewhere between Nigel’s prognosis and death, I stopped. It’s as if my mind recognised the mental instability of dreams and sought to protect me. Since he left us, my dreams have returned but Nige is seldom in them. I recall one that left me reeling for a day or two after: the image so tragic, vivid and the emotion so raw. Last night I dreamed of him again. And today I haven’t stopped crying.
I haven’t been sleeping too well. I’m trying to not drink before bed because, although a very good sedative, it stimulates the tear ducts and makes my mind a little too wobbly. So I have a cup of tea, Radio 4Xtra and maybe the iPad.
Yesterday had been particularly tough; permanently on the edge of tears at work – I don’t know why, it’s just how it goes and how it’s been now for a couple of weeks. It may just be a long term but all I know is that I’m bored of feeling like this. I’m exhausted and, more importantly, I worry that those closest to me will just despair and start to move away. So I took myself to bed, I set the Sleep Alarm and hid myself under the quilt.
I’m walking through a village or small town. I have a young lad with me, nattering away about all things trivial. I’m looking down, smiling and completely engrossed in what this chap is saying. A flash, and it’s Gabe beside me; I look up as I sense someone approaching. It is Nigel, in a sandy coloured suit and he’s wearing a wonderful smile. He stops and opens his arms to me.
“Oh my God! Oh my God! Oh my God!” I am elated.
Dropping whatever I am holding, I run forwards, towards that man of mine. With every running step I take, Nige takes one too. But they are slower. And just two steps in he starts to collapse… his leg buckles… he’s gone.
I awoke at 3am. Pillow tear soaked and throat sore from silent sobbing. Hugging the pillow and bringing my knees up, I rocked myself back to sleep. No tears now. Breathe regulated and head clear.
It’s daytime, cold and I am sat on a bench, looking at nothing in particular. I feel calm, I think, and safe. I lay my head lightly on a shoulder that is next to me. As I do, I feel the lightest kiss on the top of my head, only it isn’t my head, it’s my hat. I smile, let out a sigh.
At 5.30am I woke up with the sigh from my dream. I straightened my legs, stretched like a cat and allowed a smile to warm up my face. I remembered both dreams of course, and both emotions. Where the one left me with an indelible image of my lost man, the other left a feeling of hope. A reassurance that, no matter what, everything will be alright.
However, as is the way of grief, the focus, albeit unintentional, was the image of Nigel. It wouldn’t leave me all day. As I strode through the school, taught my intervention group, marked books – all I could see was my crumpled man. I sobbed wherever I could. It wasn’t until I got into the van at the end of the day that the other dream washed over me. Though I cried all the way home, I felt safe doing so.
This has been a term like no other. In over 16 years I cannot recall a group of weeks that have left me feeling quite so upside down and inside out. I guess this is what happens when you step into the forward flowing traffic of life.
As I glance over my writings throughout this term, I am heartened by the reflective nature of them all. None are pure sadness, tears or despair, yet I know that it was these emotions that brought me to my laptop. The hope and longing for a life better led rings out throughout and as I read, I am convinced that the people I have in my life are making all the difference.
With help, life happens.
It’s as if each person, place or thing, are connected to me by an elastic-band – alongside that bloody elastic-band of grief I’ve talked of before… But these snap me back to hope each time I sink too low. You don’t need many (I have just two), so long as they are strong, resilient and can catch you when you fall.
Because, like it or not, life happens.
Impatience Is A Virtue
For the past month or so I have been two people. I have spent weekends driving through the Welsh countryside, marvelling at the mountains, falling in love with the language and laughing at the loon sharing my jaunts. But it’s not just being in Wales that makes me smile. It’s doing something new, completely different to what I may have done with Nige: clothes shopping with a friend, meals at my brother’s and attending gigs on my own – all things that I’ve done in the last few months. All things that have reminded me that I can smile, relax and be happy.
When I return from my little adventures, be it to Quemerford, Bristol or Wales, I am reborn. I have hope and determination and excitement for what may lay ahead – good or bad. My mood is positive and my energy levels increased. But after just a day back home I feel my mood darken. The house, which has been my safe place for so long, a haven where I can cry and scream without fear of reproach or causing alarm, has become my prison.
I underestimated how much psychological damage can be done after two years of utter heartache, despair and desolation. Everywhere within these walls holds a painful memory (along with many good ones, of course). I don’t think a single space remains where I haven’t either performed some kind of medical care or shed silent tears. Even the view from the top of the garden holds no wonder for me anymore.
Work too has lost its allure. Back in March it was my salvation, I was transformed by being back in class, doing what I was good at. But now, just 6 months later, it feels tired and old. I find myself impatient to begin a new life and not to regurgitate my old one. To remodel it with one very painful omission cannot be done healthily and I’m surprised at myself for thinking it could.
So it’s high time I fixed my sights on the future. Not all of it, obviously, but enough for me to feel real excitement, a little anxiety but genuine happiness. I have taken the first few steps and am eager to continue forward… For now I’ll give you just two words:
Watch. This. Space!
Moving On. Well, Trying To…
It’s fair to say that the year has been a shitty one. Not just my shitty year, but those gentle folk around me who have not only lost Nige but suffered their own personal losses on top.
We rebuild though. We choose carefully the bricks of our new foundation and bravely forge new friendships and nurture older ones. I think I’m doing well. I am cautious by nature and so check and re-check the strength of relationships I hold dear. Then I sit in my front room, on my own and dwell.
I never dwell on mundane stuff. It has absolutely no place in my heart, my soul and my life. It’s the bigger stuff – responsibilities, I’ll call them, that pound my head and leave me shaking. When friends are here, or on the end of the phone, I can conquer everything. When Nige was here, we did together. But on my own, physically and mentally, I’m fucking useless…
So I’m checking – re-checking – my foundation. I’ve spent all of Saturday unpicking my life, or rather reorganising it a little. Nothing needs changing, I love the people I have close to me, but it all needs strengthening. I need strengthening.
Although today has been an horrendous low (and I am sure there will be others) I have realised that it takes very little to unravel a lonely soul. So, it seems obvious to me that in order to keep my soul whole, I need to make more of my relationships – to ensure that though alone for much of the time, I am never lonely.
Wow, if you read all that, thank you!
I believed I was coping – I am, I guess. But sometimes, just sometimes the world crashes in and strips me of that belief. I am left in a heap on the sofa we chose together, barely coherent whilst life continues, just continues to pass on by.
I am trying so hard to grab it with both hands and hold it tight. But not right now.
Late evening, on January 12th, 2018, we metaphorically linked arms and tentatively stepped forwards together. Together but significantly separate. We stayed this way until after the funeral, when we each found others to take our arm; what stayed the same was our steadfast eye on the future. What changed was our dependence on each other.
I watched with pride, as they rolled on with their lives and I congratulated myself on my avoidance of self-pitying rhetoric. But here’s the thing; whilst they were striding through their grief with quiet stumbles, I stayed on my safe path, too self-conscious to venture out.
The past 6 weeks, though, have taught me much; from fulfilling life-changing ambitions to embracing family and from saying ‘yes’ to things that I thought should be ‘no’ to exploring roads I’ve never been on. I feel as if I have firmly stepped off my safe path into the forward flowing traffic of life.
Down days are still aplenty but as I approach the new academic year, I feel hopeful for the first time in almost 2 years.
“It’s lonely. The evenings, you know? That time when historically you’d chat about the day, make plans for the weekend, year, life… Now I’m mainly just flitting from laptop to iPad, TV to puppy with a glass of something on the arm of the sofa…
It will get better – I just need to learn to live with it….”
Countdown To Madness
As colleagues wearily count down the days, I quietly dread the fast-approaching, endless days of the Summer break. I was never a fan but now I am seriously concerned for myself…
So I have plans. Not many, but from small acorns… Keep an eye out for me and I’ll see you all on the other side! (September, obviously).
That girl I told you about, Gemma who I took to the Vintage Nostalgia Festival? She broke my heart today…
Not in the way you’re thinking; she suffered a bereavement at the start of the week and I saw her for the first time this morning. That’s what broke my heart today…
Caught up in grief (I know that feeling), single minded (I know that feeling) and loved by many, she is still my little potty-mouthed friend and talking to her today – well, I glimpsed a little of what she dealt with with me. And it’s tough.
“I’m okay with photos from when you were both young… It’s the ones when he was ill; they just remind me how fucking unfair it all was.”
Harry Lee, 2018
This isn’t a rant; more musings whilst being dragged through the meadow by the pup. But it might feel like one. Honestly though, take my word for it, it isn’t.
“He must be a great comfort to you.”
I have been told this a couple of times by lovely, well-meaning folk and though initially it was Harry and Gabe who were the ‘great comfort’, it is now Django. I find the phrase odd; it just doesn’t seem to go with my situation. You hear it often in classic fiction, I think, like Pride and Prejudice or Poldark: Aunt Agatha, for example, was only against poor Verity’s fated marriage because she was a ‘great comfort’ to her and she’d miss that. But wasn’t that because Verity made her comfortable? She brought her food, her clothes. She sat with her and talked or read to her – she quite literally made her life more comfortable. So is Django a comfort to me? Does he make my life more comfortable? Well, as I sit here, sweat causing my hair to frizz-out manically, boots caked in all manner of livestock shit and my hands tingling from nettle stings and that slight swelling heat brings on; ‘comfort’ is not the word that springs to mind!
Now, ‘bearable’ is a good word. Django definitely makes this lonely life bearable. As does the gin I’m holding right now!
“You’ll feel anger – it’s perfectly normal.”
A stage of grief is ‘anger’ I am told, though I’m not sure what this means. For some time now I have wondered when I will experience this and what form it will take. I’m considered to be logical and practical – even cold and as such, I cannot see where my anger will be directed. I have said, of course, “Why Nige? Why not his shit of a brother? Or Brent?” but my next thought is always, “Because. Because cancer is indiscriminate, taking the lives of children who are just learning about the world, taking away the hope from young adults when they have only just glimpsed their place in it – why not Nige? Why not me? You?”
So it’s a circle, and I don’t view anger in that way; I see anger as an explosion, with fallout, repercussions and a resolution. If Nige had been killed by someone, then I would be angry with that someone. If he had taken his own life, I guess I would hold some anger against him for choosing to leave me and the boys but the enemy here is a disease; it has no face or tangible force. Basically, I can’t punch and kick it can I? Again, that’s anger to me.
In short, my way of thinking is a circle and after you’ve gone round once and realised it’s a circle, you don’t go round again. Because, like one of those cheap garden features, after being regurgitated through a pump a dozen times, it becomes stagnant and mouldy. Unhealthy.
I strive, I do, to be more like the natural cycle of water: to careen down mountainsides, crash over obstacles to find the simplest way forward with the hope of landing in a calm, clear lake; still and free from turmoil, warmed by the sun.
So I think instead of feeling anger, I feel philosophical. It’s equally exhausting but just not so pointless; it’s widening my perception of the world and when I do flow into that placid lake, I will be a whole lot wiser.
Now, Want and Able are two different things
One is desire, and the other is the means
Like I wanna hold you, and see you, and feel you in my dreams
But that’s not possible, something simply will not let me
Want and Able, Jack White
Everyone tells me, “He died knowing he was loved.”
I reply, “But he didn’t. He didn’t know anything…”
My son softly says, “I think that’s better, mum…”
“I want him back but can’t have him. I’d like her to care but she can’t. I have to move forward and I will. Because he would want that, and that is the closest to having him back I will ever get.”
“Gabe’s a practitioner of perpetual motion – move forward at a steady pace: don’t stop or you’ll fall – kind of guy; whereas Harry only puts one foot forward if he’s absolutely, positively certain that it’s the right foot and the right direction. I’m a bit like that myself… What you should take from this is that we’re all moving forward; at varying speeds.”
This Is Me
Just to get things off my chest; here we go.
Firstly, I am not brave. I mean, I’m quite brave but not as brave as you all seem to think.
Brave adj. Ready to face and endure danger or pain; showing courage.
‘Ready’? I’m not ready! I had 16 months to prepare, am almost 4 months in and I am still not bloody ready. I was thrown in to this ocean of grief and, really, when landed with a choice of ‘sink or swim’ what would you do?
By making that decision to battle through the waves, I am merely making the decision to survive. But for every frantic swim forwards, there’s the inevitable need to be still and tread water; the moments where the amount of tears that flow from my eyes, become the salty ocean. It’s during these moments that my head feels heavy, as if I could just close my eyes and let it sink beneath the grief. Is it brave to not give in to that emotion? I suppose it does show a certain amount of courage. So why do people label suicides as cowards when all they really are is lacking a little bravery?
Secondly, I will never NOT be alright when you ask me. Why? Because if I wasn’t alright, you wouldn’t see me; I wouldn’t answer the phone. For some women it’s make-up – never leave home without it, for me it’s vulnerability. Only two people call my home phone, (actually, only one now) so I know who’s on the other end and if I’m drowning in my tears or reminiscing with myself I simply let it ring. You’d assume I was out and never check because, let’s face it, you don’t really want to know. If you did you would be on my doorstep; catching the tears on your shoulder.
Finally, not all grief is the same. Most people know this and completely understand the complexities of relationships and their bearing on emotions after losing someone. I can give you an example if you like:
In 2001 I lost my brother in a tragic accident. We were all left shocked and devastated by the utter surprise of it all. Four years later, talking to a friend, we realised we had both lost a brother. But due to differences in our sibling relationships, our grieving process was completely at odds with each other. Ten years on, we were both in the same place of acceptance and forgiveness; our grief having run it’s course, I guess.
So if, when comparing like for like, grief can be so incredibly varied, why do people feel that they ‘know’ how I feel because they’ve lost someone too? They don’t, they can’t. How can they know exactly what I’ve lost when they don’t know exactly what I had? In the same way that I don’t know exactly what they’ve lost. I mean, I lost my grandma but we really didn’t have much of a relationship so my grief was minimal. I have another friend though, who’s nana is her world… you see where I’m going with this?
Basically, grief is massively personal; you owe nobody an explanation as to your feelings or emotions and you aren’t owed one in return.
My bravery is transient; it depends on you all, with your wet shoulders and understanding words. Without you, I would’ve disappeared under an ocean of tears – you are my Braves.
When you see me, I am fine. It’s when you don’t that you need to worry so, to that end, I will always endeavour to communicate somehow; be it Facebook, WhatsApp or my WordPress. I probably won’t ring you though – I just don’t do that.
Though my grief be all-consuming, I am learning to make space for others. I am starting to notice the hurt and pain that loved ones are enduring and have begun to build pathways for them to access that part of my heart not broken. It dawned on me, just today, that if there were 100 people at Nigel’s funeral, then that’s 100 people hurting at some point… If you need to talk, I am here.
A Heart-Breaking Account of the Deconstruction of a Most Beautiful Brain.
“I don’t know what to say, do or be. You were my everything – more than that – you were you.
I’m so good at boxes or compartments, places for people and experiences, for heartache and love. My head is full of them; there’s one for my childhood, firmly closed. One for my adolescence, closed but not locked, like a love-sick diary. My mum has a box that is continually being added to and Ben. Ben has a box which was locked before I even attempted to go through the contents. What a mess. You, Nige, you are not in a box. I couldn’t bear that. I decided a year ago that you wouldn’t be archived but you would stay as an open book by the side of our bed. I decided that I would embrace this tragic experience of ours and feel every second, not skip the painful bits and shut them away. I did this because to do so honours you and improves me.”
“I can only imagine how you feel…”
“Well, I don’t want to sound, you know, but I had 16 months to imagine how I’d feel and, honestly? I wasn’t even close.”
Nothing Is What I Have Now
Nothing was what we once were
And happiness didn’t live there.
Then something became available
We breathed a breathe,
Took a step,
And happily became a pair.
Something was better than nothing
But something wanted more.
So children beckoned us in
We breathed a breathe,
Took a step,
And delightedly we became four.
Everything is what we had then
Nothing fazed us, you see.
Then fate decided to show
We breathed a breathe,
(A long, slow breathe.)
We took a step,
(A faltering step,)
And pulled together as three.
Nothing is what we are now,
Something is missing in here.
But we hold each other tight
We breath a breathe,
We take tiny steps,
We stand together,
Forever and ever.
Everything shows us you’re near.
“People say, ‘Oh, he lives in my heart,’ and I go, ‘Yeah, yeah, no, I know,’ but he doesn’t. I mean he’s in my heart, but he doesn’t live at all.”
The Only Way
I have no idea how or where to start. I think I’ll just wander through my head and let the words flow. Or not. We’ll see.
Those who have followed our journey will know how determined I’ve been in getting my beautiful man the most dignified route off of this mortal coil possible. A vague and hopeful notion at the beginning which became an absolute after his ‘false alarm’ in August. No thin, blue blankets or dingy side-room, not when the view from our own, lovingly chosen bed, in our prettily decorated bedroom was so stunningly beautiful. No.
I’m sure I voiced this wish of mine but maybe not too loudly and probably not to Nige. What would’ve happened if I’d berated the notion of dying in hospital and then, due to no fault of ours, that was what we got? It so nearly went that way too. So I dug my heels in more and promised Nige he would never go back to hospital. He chose to stop the ineffective chemotherapy and we started visiting Dorothy House instead. I’m crying now at the memory of his face as we walked through the main door, into the waiting room with a sweeping oak staircase on the left and a huge open fireplace on the right. Every week I took him to see Steve for his physio, every week he went in tired and came out invigorated. We did that up to the beginning of December. Nige was genuinely fed up when it stopped but his exhaustion was so very acute that it became unsafe. I hoped it was a blip and that next week we’d be back to it. It wasn’t to be and he never asked about it either.
So it was just me at home really, with a little support from the boys. Things had to change at some point; Ann from Dorothy House told me that right from the beginning. I heard it all, took it all in and filed it away somewhere. “Carers, respite…” No; “Me, home, bed…” And in the end we were both a little bit right. Though I was more right (of course).
After Nigel’s fall on the 18th of December, he took himself up to bed. Although he continued getting up for the toilet, he never came back downstairs. The nurses still came though, to check his blood sugar levels and, slowly, they slipped into my life. I felt comfortable with them there, bathing Nige in bed and it meant that I could share any worries I had. It turns out I had quite a few…
They saw me struggling to get Nige to the bathroom – two days later we had a commode and a bed bar so he could pull himself upright. The commode was the biggest help yet when first offered one I said, “No, no, I’m fine…” It took me almost a week to succumb. Same thing happened with the Over Night Respite Care. Actually, that wasn’t really that helpful. Twilight Nurses? “Honestly, I’m fine…” In just a few weeks the bedroom resembled a ward, with a commode, bed bar, back rest, slide sheets, handling belt, ankle pressure mattress and a whole body mattress topper – you turn your back for a second!
In the final week carers were introduced. It started with a letter from Virgin Care telling Nige that he qualified for care… Then there they were, complete with file, three times a day (four, if I wanted). I know I would’ve got used to them but I didn’t have to. I think we had one complete day – maybe two. On the Friday he died, Anna knocked the door. The nurses had been around a few times to set up syringe drivers and Anna was dropping off more meds.
“I’m so glad you’re here. He’s not right, he’s been different all day.”
It started with no appetite. Then, at about half 4, his breathing changed. He was shaky, and sounded like he was straining. I told Anna that at first I thought it was serious but then I started to think that maybe he just needed to empty his bowels – it had been 12 days. Anna concurred that he was straining and did a sweep. He was more comfortable then, his breathing, still laboured, was less pained.
“I’m not going to say that things haven’t changed because it’s hard to tell but…”
“I know. I know. But at least he’s less uncomfortable… and he’s had a pretty blonde nurse put her fingers up his bum, which I’m sure was on his ‘to do’ list!”
I think we both knew that the beginning of the end had started. With Gabe at work and Harry in the garden, I perched on the bed and took his hand… His breathing went through stages, each one gentler than the last. As the tears fell he slipped away. I waited and waited for the next breathe… and waited.
“I wanted my family to be that but they showed me over and over that they didn’t want me. So that’s it; I’m done. I hate them all.”
Well, Come On Then, 2018…
That bit between Christmas and New Year is a funny old time. It’s just 6 days but it feels longer some how – it always has. I think it’s because you go ‘off grid’; you have no clue what day it is, just a vague idea of the date. Now we have a myriad of ways to watch TV, you can’t even rely on your planned Radio Times viewing to get your bearings! So it is, I will fill you in on our ‘Bit Between New Year Tale.’ It won’t be chronologically correct, I’m sure, but you don’t know that. Well, you didn’t know that; you do now…
Boxing Day (Tuesday) I like Boxing Day. The dust has settled and the silence is blissful – aside from the actual date, it’s got a much more ‘new year, new beginning’ feel to it. Marianne visited for a coffee – hazelnut latte – and a chat. We compared Christmas Days; not much between them to be fair as Mike was ill in bed all day too! Anyway, I mentioned New Year and she might pop round. I’m dreading being on my own, for I’m sure the boys will be at some party somewhere, and I’m pretty sure Nige’ll be asleep cometh the hour.
27th (Wednesday) Well, the vinyl floor for the studio turned up today. I had to check my phone to check the date, nope, it’s not the 2nd of January… No matter, I was chuffed to bits. Despite having had 2 glasses of wine, I threw myself into laying the floor. Hmm, surprisingly easy actually. Needs a trim but I’m sure Nick will do that when he comes over to do the skirting.
28th (Thursday) Lovely to see Nick today. He came in to fit the skirting board in the studio. What a difference it made! I filled the holes in this evening and will need to paint it at some point. That’s if I can stop Gabe filling the room first…
29th (Friday) I had a lovely, unexpected visit from Sue today. She came laden with wine and gifts and open arms. I wept on her shoulder, as I filled her in on what’s been going on here. She stayed for quite a while talking about her Christmas with her poorly aunt, work and life in general. I consider myself incredibly fortunate to have a boss who is so understanding and genuinely concerned for my welfare. It makes this enforced leave of absence of mine so much easier to deal with. Man, I miss work.
This afternoon I dismantled the huge oak table, ready to go down to the studio. I eventually got Gabe to help and between us and Harry we managed to get it down and put back together. Gabe’s unsure about the size but I think it looks great. Anyway, it was always meant to go down there so that’s where it’s staying!
This evening Michelle popped in for a glass or two. Her Paul had fallen asleep so, as we both had sleeping husbands, she decided to call round. It’s lovely when people call round unexpectedly, so much better than when it’s planned. It’s like finding a fiver in your jacket pocket.
30th (Saturday) Matt and Gem came round this morning, primarily to help me order the stuff for the shower room, but it’s always lovely to see them both. We had a lovely chat in between sorting out Nige and helping the nurse with his bed bath – nice to share my day with others really. After they’d gone I set about ordering all I needed for a rather splendid shower room. That’s another job done. Gabe carried on moving his music stuff down to the studio. It’s looking wonderful.
This evening we had an unsettling exchange with Nige. None of us really knew what was behind it but I’m guessing it was borne from frustration, boredom and fear. It started, I think, because I was a little less graceful than usual getting him on the commode. This was due to my fragile back that just can’t hover, waiting for him to be ready anymore. I may have muttered an obscenity too, just to help with the motivation. Anyway, Nige felt like he was too much trouble for us,
“Why don’t you just fucking get on with your shower [life]”
and more of the same… We all felt that this was it. That this was Nigel’s exit cry. As I held his hand (once successfully calming him down and getting him back into bed) he said,
“You need to keep in touch.”
“I will. Of course I will.”
I’ll not elaborate – it’s not an easy night to recollect honestly. The upshot though was a confused Harry and an upset Gabe. Me, well, I get it: he’s isolated, lonely and scared. I feel the same way.
New Years Eve (Sunday) Food shop! Normally I loathe this but today I nailed it. I think the sense of freedom helped. That and the need for food in the house to survive. I was home by 3. Harry was giving Nige a dose of Oremorph having already, along with Gabe, helped him to the loo. I’m so incredibly proud of them both, our little soldiers.
Neither of the boys had plans for this evening – we don’t make plans anymore. In fact, I was the first one to have the evening planned with a scheduled visit from the Twilight Nurses (!) and Marianne. We’d anticipated my loneliness on this over-hyped night and she thoughtfully offered to keep me company. Besides, Mike was poorly too so there was little point both of us sat twiddling our thumbs in different houses! Then Harry formed a planned that involved me as a driver… I took him over to Southdown at about 8, the very time Marianne was arriving at mine. Gabe played host until I returned and stayed in until about 10, half past. Then he too disappeared into the night of revelry. As Maz and I drank our Babyshams, picked at pistachios and nattered on, Nige was audible over the monitor. Only once or twice did I have to go up to help him to the loo. Maz left just before midnight, so she could see New Year in with her man – and rightly so.
I went to bed just after midnight so this should be labelled New Years Day (Monday). There. Nige woke for the loo at 2am. I lifted him, he sat, did nothing, I lifted him back. 2.30am he sat himself up. I asked if he needed the loo,
“No, I’m fine. I’m fine.”
“But you’re sat up lovely. What do you want?”
“Nothing. I’m fine…”
“Do you need a wee?”
“No. I’m. FINE!”
“Do you have a headache?”
“I think so.”
So I gave him a dose of Oremorph and went to lie him back down to sleep. He then pee’d all over me, soaking the mattress and sheet at the same time. By and large I kept my cool,
“Oh for God’s sake Nige! When I ask you if you need to wee and you do, please say ‘yes’. You know I am happy to help you…”
“I know, I know. I hear what you’re saying.”
“I don’t think you do Nige. I think you think you can do this alone but honestly, to keep us both safe you need to listen and accept my help. Do you understand that?”
I cleaned up as much as I could: First I put him back on the loo (commode), so I could lift the mattress up to get the counterpane off the bed. Next the carpet, followed by a towel over the wet bit of the bed (no clean sheet as it was in the tumble drier). I then, somewhat grumpily, lifted Nige back into bed, cleaned him up and settled back down. 3.30am I awoke to Nige saying,
“I need my tap.”
I asked if he wanted the loo (of course) and he repeated that he wanted his tap and then asked,
“What do I mean; tap?”
“I don’t know… Do you want a wee maybe?”
Up again, lift him to the loo,
“What are you doing?”
“You said you wanted the loo!”
“Nooo! That’s not right…”
“Well, to be fair you said that last time and then pee’d on me so… if you don’t mind…”
“For fucks sake!”
He sat there for a while,
“Have you finished?”
I lifted him back, sat him on the bed. There was nothing in the commode. And then, you guessed it, he pee’d all over me again!
“You said you’d been Nige!” Deep breathe, “Never mind… Come on.” Big hug.
I was up a few more times after that but they were pretty uneventful, aside from adding to my already singing lower back… At 7 I got up, fed the cat and tried to stay downstairs. Nige was still quite unsettled though so I curled up in the tiny space remaining in bed and went back to sleep.
You see, I told you New Year was always shit.
All was quiet on New Years day because both boys (one in, one out) were nursing hangovers and Nige was sleeping off his nocturnal activities. Whilst we awaited Gabriel’s ‘walk of shame’ home, Harry and I launched ourselves at the Lego! I tackled the Hogwarts Express, the reason I wanted it down from the loft in the first place, and Harry embarked on a far more complicated space thingy from Star Wars… Somewhere in between cursing and silent celebrating (only Lego users will understand this) I produced a New Year dinner. Sure, we had to sit on the sofa and eat off our laps but we’re adults so we endured it like heroes. Dinner ate, pots done, back to Lego.
2nd (Tuesday) Given how rough Sunday night was, I was surprised at how much better Nige was last night. Still, the District Nurse has referred me to the Hospice at Home team at Dorothy House because, I think, of my refusal to allow Nige to go into Dorothy House for respite care. I’ve said on here before that my time with him is limited already, I’m not interested in limiting it even more. Anyway, I conceded to having a carer stay in the house over night to help Nige, thus enabling me to sleep, especially as I feel a bit of a cold coming on… The idea of catheterisation came up again. Oh I don’t know. It’s so undignified, isn’t it, having a bag strapped to your leg and a pipe up your whatsit… But then so is having your 5 foot nothing wife unceremoniously hurl you onto the commode and back, or, worse, pissing the bed. None of this is dignified in the conventional sense anymore. So it has to come down to safety – Nigel’s and mine…
3rd (Wednesday) Another alright night and my cold seems to have come to nothing. Hospice at Home rang,
“Hello, is that Lisa? You’ve been referred to us by Sally and we have you down for tonight!”
“Oh wow, really? I’m not sure how it all works but…”
“Well, Jenny will come round at 10 and stay until 7 in the morning.”
I wasn’t sure what the set up would be – would she sit in the bedroom with us, or am I expected to sleep somewhere else?? All these doubts almost made me say, “Thanks, but no thanks.” but I didn’t! I thought, ‘Give it a go, work with it!’
Just before 10 Jenny arrived. We had a chat and I introduced her to Nige and Gabe. She asked me how ‘it’ had all started and I told her. It was rather lovely to talk to a stranger who knew as much as, if not more than, me about this shitty brain tumour stuff. And not the medical bit either; I’ve had my fill of that. I used her time here to sort out the kitchen, clean the sink etc and went up to bed at my usual 12, half past. There I stayed until about 5.30am, when I gave Nige his Oremorph. Then, again, at about 6 when he needed to pee.
“Oh I wonder if Jenny can help with that…”
And up the stairs she came, like a Fairy Godmother. But then I learnt that they’re not allowed to lift. Well, that’s sort of the thing I need most help with… and if I’d slept elsewhere would she have woken me up? Hmmm, I was a bit baffled though I did understand her position. I was grateful for her support anyway – every little helps, right?
4th (Thursday) Mum and dad came this morning. They actually woke me up from my mid-morning nap on the sofa. We had a lovely morning, chatted more than usual and they went in to see Nige, which was great. After they’d left, Amanda and Rachel (Nurses) turned up. They were full on, trying to sort out carers, medications… me. They’d also brought with them a catheter but I wasn’t ready.
“But it will make your life so much easier Lisa.”
“I get that, I do, but the only time he leaves the bed is to pee. I don’t want to take that away yet…”
“Oh bless you, you’re still thinking of him first!”
We talked about the safety issues with me moving him so often and I was left with an awful lot to think about,
“Let me chat to Harry and Gabe, see how they feel.”
After they’d bathed Nige they checked the ‘Just In Case’ box. Marianne and Jane had arrived by then – such a busy day! We hadn’t seen Jane for a while so it was extra special when she went upstairs to see Nige. We chatted over tea, the three of us, whilst Nige slept; they both stayed for a good couple of hours. The rest of the day was pretty chilled, but that’s what having company does, it sets you up to deal with everything else.
5th (Friday) We had another uninterrupted night, waking up at 7. I gave Nige a dose of Oremorph before going downstairs to sort out his breakfast and meds. I happily and methodically moved from one little job to another, even transferring Nige back to bed from the commode with uncharacteristic grace. Halfway through the morning Hospice at Home rang,
“Hello Lisa. Your down to have a night carer again tonight… Is that something you still want?”
“Oh, hi! Um, actually he’s been really settled the last couple of nights so I’ll give it a miss if that’s okay.”
“That’s lovely Lisa. We’ll ring you again next week.”
The shower bits arrived today so I waited for them in the studio. Whilst down there, Anna (my favourite District Nurse) turned up. She helped me with my delivery actually as we nattered on about this and that. We were awaiting some meds so she arranged to bring them later, with Sally. I had wanted to do the food shopping – not for the shopping bit but just to get out – but Gabe didn’t get home until later so I’ll have to do that tomorrow. I did win the table on eBay though and so a quick trip to pick it up from Corsham at about half 7 got me out. Then an impromptu (always the best) visit from Michelle just as I got back gave me the perfect excuse for a glass of wine.
So, a busy day then, with lots happening to distract and engage me. And Sally and Anna returned with the meds we need. Nige was catheterised too.
Our Christmas Tale 2017
Friday, 1st December
Just two weeks left at school, amongst the glittering fairy lights, Nativity performances and excitable children. And I’m just starting to feel the spirit of it all.
As I left the house this morning, Nige pottered back to bed – he’s done that all week. I try not to think about him whilst at work but it just doesn’t work like that, life. You have no more control over your thoughts than a supply teacher has in a year 6 class, it appears.
This morning we had a whole school assembly to mark the end of a successful Maths Week. After break we were all back in the hall to watch the year 3 and 4 Nativity… you cannot deny the utter yumminess of a Nativity can you? It seemed to kindle a bit of a festive spark in me which has been conspicuous by it’s absence thus far. I may put the tree up this weekend!
At home, Nick was still in the garage, plaster-boarding it, Nige was up but napping on the sofa and Harry was sorting himself out something to eat as he was expectedly working at 3.30. I decided to not do the food shopping (putting off what could’ve been done today until tomorrow). Instead, I let Harry drive down to Morrisons, to work, and picked up a few essentials before coming back home. He’s good in traffic, very laid back and unflappable. At half 5 I did the same with Gabe – to the fountain though, where he jumped out to walk on to work. Again, a good drive, though a little quick at the moment!
We had guests tonight; Gemma and Matt with Schwartz Bros Burgers – glorious! Nige was awake and chatty, loving his Chicken Special and the carrot cake made by Gem’s nan. Gem and I polished off two bottles of Prosecco and hooted with laughter reminiscing over past talent shows, Christmas nights out and flat tyres… A truly wonderful evening and the perfect end to the first day of the festive season…
Saturday, 2nd December
The cat started meowing at 7.20 so, in a desperate attempt to keep Nige from awaking, I leapt out of bed, hobbled downstairs in the altogether (having left my dressing gown in the utility room) and headed him off. All was silent as I fed Eccles and then snuggled up under the furry throw on the sofa for a few extra winks. Just 20 minutes later Nige is looking down at me,
“What are you doing down here?”
So the start of the day was a slow one. The Prosecco from last night was not only bouncing around my head but the last glass that beat me still stood proudly on the coffee table, the aroma adding nothing to my slight hangover. Nige went back up to bed after he’d eaten breakfast so I snuggled back under the throw and slept for a while. I really wasn’t good for much else.
After lunch, Harry and I got the Christmas decorations down from the loft. Well, I stood at the bottom of the ladder while he swung like a monkey through the hatch and found all we wanted. For some time now I’ve wanted to make the Lego Hogwarts Express again so, as he was there I thought,
“What about the Lego? Pass down the Lego…”
Tearing him away from the newly found Lego was tricky but food shopping had to be done and, thankfully, Harry possesses the same, fucked up, ‘food shopping is fun’ gene that his dad has. In fact, not content with skipping around the aisles, he then decided it would be speedier to self-scan… It wasn’t. At one point I thought the assistant who kept coming to our aid was going to punch us!
This evening we had more visitors. Rob and Jo came round at about half 7 to play ‘Ticket To Ride’. I’d tidied and cooked dinner, cleared up and hoovered. My Prosecco induced headache was gone and I wasn’t looking forward to round 2 – no wine then Lise. Simple. Just snacks, a good game and lovely company. Hmm. Jo brought wine and it’s just plain rude not to partake… Once we’d got through that, we opened the bottle that mysteriously found it’s way into the trolley earlier. Man, I have next to no willpower.
Nige was brilliant tonight. I knew he’d struggle with the game at first but he really persevered. He kept up with the conversation too – the same as last night actually. We said goodnight to Rob and Jo at 11.30 – way after his usual bedtime. Now, if he doesn’t sleep after two nights in a row of conversation, stimulation and the occasional beer, I’ll be surprised!
Sunday, 3rd December
Another truly reluctant early start. Nige cannot help but get up at 7, to feed the cat, make his porridge and take his tablets.
“You don’t need to get up…”
But I do. Though he hasn’t had a fall in almost a week, he has a tendency to forget what he’s doing (especially when tired) and only 2 days ago he dropped his Dexamethasone as he tried to place them in his mouth. This morning he prepared his porridge but forgot to put it in the microwave. I’m sure he’d have sorted it himself but I feel it’s important to know where we’re at, you know, as much as we can. I sat and watched as he ate and drank and took his medication, then we both went back to bed. He couldn’t sleep so neither could I… Back downstairs!
So much to do, so little time to do it and so few hands to help. With all the entertaining we’ve been doing, quite a collection of empty cans and bottles had gathered in the kitchen. That was the first chore then. Whilst bringing the recycling boxes back up from the front I stopped and chatted to Brent for a bit. The whole road were out doing the annual ‘road clear’. He asked after Nige and wondered if I’d be attending the AGM at Michelle and Paul’s. I declined – too much to do and all that.
Nige got up after lunch. He was very confused, cross with himself and grumpy… I made him his lunch (“too dry”) and carried on cleaning up the front room, ready for the tree. Then I took Gabe out for a drive. We drove out to The Globe, up to Newton St Loe and Pennyquick then over Odd Down and back home. Much improved, I think and we were just in time for me to start the dinner. I did a bit of delegation, you’d be proud to know; Gabe prepared the batter for the Yorkshire Puds and Harry put the lights on the tree. Slowly, very slowly, we’re starting to win! Pots washed as I cooked the dinner so as soon as we’d done I was ready to take Gabe to work.
Phew, what a whirlwind-day! Nige and I spent the early evening with Harry watching the final part of The Deathly Hallows. It was emotional, and Nige sobbed almost the whole way through. Later too, he sobbed. I honestly have no idea how to help him anymore than I am. He cannot put into words all his frustrations, just into his face and it breaks my heart. Such a beautiful, clever man brought down to this. There, that’s me sobbing now. This is what happens when I sit down and do nothing, I dwell.
Monday, 4th December
I must’ve had a glorious nights sleep last night because I leapt out of bed, at 7am, like a gazelle. I was quicker than Nige and even caught Eccles on the hop! Such a lovely way to start the day; casually feeding a sleepy cat, putting away pots from the draining board, taking my Thyroxine at the CORRECT time… I may even have hummed a tune.
Then, at just 10 past, Nige was beside me. Thankfully, I was on a roll and smoothly went from preparing my porridge to his porridge and continued to tidy the kitchen. I swear, at one point there were bluebirds. So we ate breakfast together as usual, and Nige told me how he hadn’t slept,
“Sleeping tablets Nige – you need to take them.”
‘No, I don’t need to. They don’t work.”
“But neither does not taking them… Look, whatever. You can’t sleep, take a sleeping tablet. You won’t take one, so don’t moan if you can’t sleep!”
I’m tired of this argument now. I think you can tell.
I left for work as Nige went back up to bed. As I leave the house I have an overwhelming sense of peace and freedom. Somewhere along the short drive from here to there, the guilt sets in and the tears fill my eyes. By the time I park up, I’m either fine or absolutely not – it’s very unpredictable. Today I wasn’t. He’s desperately unhappy, you see. Everything hurts and he’s, rightly, fed up with it all. To walk away from that, to a place he plays no part in, felt wrong this morning. But as I walk through the building, down to the staffroom, it felt perfect; like it’s the exact place I need to be in. This work:life balance shit I’ve got going on is the very epitome of being torn in two.
Home and busy! I won’t bore you with the details, you all get the gist – just add ‘Recycling Day’ and Christmas decorations to the daily list. The District Nurse popped in. She took Nige’s blood sugar levels and checked his swollen feet. She obviously repeated everything I’ve been telling him about the sleeping tablet and he seemed to get it… Harry put away the empty Christmas decoration boxes (oh joy!) and I massaged my man’s painfully swollen feet. At bedtime I suggested the sleeping tablet,
“I’ve taken it.”
“No love, that was the Quinine. The Zopiclone is upstairs…”
“Oh, I don’t need that!”
“Fine, then don’t moan tomorrow……”
etcetera, etcetera, etcetera.
Tuesday, 5th December
Well, well, well, Nige took a sleeping tablet last night and guess what? He still didn’t sleep… I was up early again and offered to make him breakfast in bed,
“No, I need to get up…”
I’m never going to win this am I? So, best to go with it. For now, anyway.
I picked Anneko up on my way to work. I often see her but was never sure whether she’d want a lift or not. Some people cherish the solitude of a morning stroll to work and the offer of a lift then is the last thing they want. I asked her the other day, in the staffroom, and she told me she’d be grateful for a lift. Well, there’s an awkward moment avoided! Other than that short interaction and a natter with Gem, I’m still very much at arms length with everyone. My choice, naturally, and one of absolute self preservation I think. People fall into 3 groups; those who smile apologetically but never engage in any chat other than to pass on information. At the other end of the spectrum, we have the odd one or two who probe and ask pretty personal questions that really have me choking back tears and, finally, the ones who know me best: friends who know what to say, when to say it and when to shut up. Oh, and not to hug me – that’s my personal space right there people. So arms length is a healthy distance, I reckon. Especially mine, which are ridiculously short.
I took Gabe driving this afternoon, to Homebase for some firewood. Nige looked quite poorly today – exhausted I think – and complained of being cold. At about half 4 mum and dad arrived. They find it incredibly difficult to talk to Nige, which annoys me somewhat. I sort of want to shout,
“HE’S STILL NIGE! HE’S STILL THE SAME!”
It’s not meant, I know, but it is frustrating none-the-less. We all sat and ate mum’s wonderful curry, chatted about Strictly and Brexit but every time I drew Nige into the conversation it wasn’t picked up. I suppose I should be grateful that they really are the only people we know like this and it stems from fear, I think, and anxiety. Also, my dad struggles with his hearing so he and Nige together are, well, pretty funny actually! The thing is, I understand all of it but Nige doesn’t; he’s starting to think they don’t like him. Hmm, tricky one, right?
I heard from Sandra this evening; Norah’s fallen and broken her wrist in a few places. She’s back at Susan’s which I know will’ve upset her hugely – she was ecstatic about being back in her flat and this must feel not only like a bad fall but a slap in the face to boot. Aha, any good news out there? Not too, good, obviously… No one likes a big-head!
Wednesday, 6th December
For a moment there, this morning, I thought that man of mine was going to stay in bed. He looked as if he was sound asleep but no, when I quietly asked if he wanted me to bring him up breakfast, he replied,
“No. I need to get up…”
It’s like Groundhog Day.
I picked Anneko up on my way to work – we were both running a bit late. Happy to tell you she’s a fan of Janis. Now, you don’t see too many of them at Roundhill! I can’t believe we have yet another week after this one. It feels very much as if batteries are running out and everybody’s eyes are showing signs of weariness… I forgot how bloody draining Christmas term is. Still, my morning was cool; had a great natter with one of my kids. We talked about missing people at this time of year, how most people carry some kind of loss with them and that it’s perfectly fine to talk about it. We finished laughing so I achieved something. Then, at 12.25 Harry rang me.
“I might need you to pick me up from Bristol… They’ve cancelled the train and it could be 4 hours before they’re running again!”
I messaged Gabe so he could let Nige know and wouldn’t worry, then left. Man, the traffic through Brislington was hideous. It wasn’t much better going into Bristol either; lots of roadworks and lane closures. Still, I got there in under an hour, with no mistakes. Big pat on the back for me! The drive back was easier, especially with Harry for company. He failed his Theory Test again – shame but he’s okay about it.
When we got home, Nige was sat, alone, on the sofa. He looked utterly broken; sort of confused and anxious. I rushed to his side,
“I don’t feel right. I feel bad…”
“What do you mean love? Where do you feel bad?”
“I just feel wrong. I made a mess in the bathroom – so tired… There was no one here.”
He rubbed his head as I looked around the room. The empty wine bottle was on its side on the coffee table, my Nightmare Before Christmas snow-globe was on the floor. I took him up to bed and tucked him in. He instantly looked better. On my way to sort out the bathroom (it really wasn’t a mess) the phone rang: Ann, from Dorothy House. What timing! She’s organising a doctor’s visit tomorrow. I contacted school to let them know I won’t be in. Then I finished the bathroom, made lunch, took delivery of the 3 plasterboards and collapsed on the sofa. Curling up under Nigel’s ‘Snug Bug’, I let the tears roll. Oh shit, it feels very much as if my world’s about to shatter into tiny pieces.
Nige got up for dinner and told me that he had fallen over earlier, knocking stuff off the coffee table.
“I couldn’t get up. I just laid there.”
“Oh sweetheart. Gabe was here but he was upstairs… When he was downstairs you were fast asleep!”
We get so much right most of the time, the occasional slip is absolutely allowed – we are only human. And very tired humans to boot.
As I sit here typing this, he looks much more awake. It’s bedtime…
Thursday, 7th December
Well, I seem to have cracked the ‘keeping Nige in bed’ thing. He was asleep when I got up. I had time to sort myself out and then heard a quiet voice calling me from the landing. It took me a while to hear him at all but I did get the gist, he wanted his breakfast brought upstairs. Yes! I think this was due to me being off today so it would appear that he likes to be up each morning to see me out of the door. Like he always has done.
I dozed off for a while on the sofa, whilst waiting for Nick or the doctor – whoever could get here first. Gabe got up (driving lesson) and made me a coffee. He started to make me a coffee… He put the kettle on anyway! At lunchtime, of course, Nige woke up. As I helped him downstairs, the doctor arrived – she couldn’t have timed it better actually. We discussed how he was feeling.
“Are you in pain Nigel?’
“No, not really.”
“Do you feel lonely?”
His eyes filled,
“I think so.
So aside from depression (which I suspected), she also diagnosed oral thrush. Apparently it’s a side-effect of steroids. Both mean more tablets… But that’s the side-effect of needing medication! Life is a series of battles and, in the main, we win. It’s the war we’ve lost; right now it’s all about honour. As I walked the doctor out, we briefly mentioned the TEP (Treatment Escalation Plan). I told her to use her common sense, we’d all been through this before, at the hospital, on his death-bed (the first time) and for that reason, our primary objective is for Nige to be at home, with us, until the end. Or for as long as possible. She also signed me off until the end of term. I’m a bit gutted about that, to be honest. I was so proud of myself and really felt accomplished; it all feels a little futile now. The other side of me is massively relieved. It’s upsetting enough to be caring for the light of your life as his brain becomes lost but to see him weep because he’s lonely is simply heartbreaking. Home is where I’m needed, by his side is where I want to be.
Nick came today, to finish off the plaster-boarding. We didn’t get to chat much as first I was with the doctor and then Gabe wanted to go out for a drive. Luckily I had things I needed to do so the drive wasn’t just for the sake of it. I had him driving through town, to Gay Street, around Queen’s Square, back up Gay Street (we couldn’t park). I managed to guide him into a small space near Charlotte Street whilst I popped over to Darcy’s Newsagents to post my parcel. From there, we negotiated lights and junctions before finally finding somewhere to park at Pulteney Practice, so I could pick up Nigel’s prescription, TEP and my sick note. By the time we got home, Nick had finished and Nige was looking a little more like his usual self.
Another emotional day in the Lee household but at least we broke the Groundhog Day!
Friday, 8th December
I tried to grab a lie-in today but Eccles (yep, him again!) meowed his way around the house until I surfaced. Nige opted to stay in bed again so I took breakfast to him. Then I fed Eccles, and thought I’d catch some extra zzs. But no. I clearly hadn’t mashed his food up small enough for,
I managed to fall asleep on the sofa after that… Until about half 10!
Harry woke me up and made a cup of tea. I mentioned to him last night about him driving me to school so I could hand in my sick note – he was ready. Whilst I was upstairs, getting ready, Harry received some welcome news. Nothing of any concern to anyone else but, man, being able to shed that particularly worry put a tiny smile on both our faces and visibly lightened the load of life.
We had a great drive to Roundhill Primary, where I showed Harry the mural Nige and I painted together and the library. I can’t believe how much the school’s changed since his time there; carpets, colour, library,
“It feels like school now and not a hospital!”
We saw Gem, had a hug and shared our news, then left for home. Aside from one dodgy moment involving a lane change, the drive was perfect.
At home Nige was still in bed. I made him lunch which he ate half of, with his eyes closed, more asleep than awake. I tucked him up and set out again with Harry to do the food shopping. Nothing exciting about that, I’m afraid. Oh, we did buy Eccles a Santa outfit but when I dressed him up in it, he literally stepped out of it in disgust! Wait until it gets colder – he’ll be begging to wear it then…
Nige got up in time for dinner – pie and chips. He looked much better for all that sleep so it must help. We spent a pleasant evening with Harry watching TV on the sofa, eating Pringles and sweets, drinking gin. You can decide who consumed what. Gabe went out (that was his driving practice for the day) so a sleepless night beckons!
Saturday, 9th December
Wow, I think I actually had the best nights sleep in about 5 months. Even Eccles meowing at 6.40am didn’t phase me; I just plucked him up and put him in the shower room. Nige awoke an hour later, wanting breakfast and was happy to have it in bed. Basically this morning was the same as all the others, I’m just trying to describe it differently… After Nige had eaten and the cat had eaten, I took up my usual place on the sofa, under the Snug Bug and had my lie-in.
Two things woke me up; first it was the Amazon delivery man. I didn’t open the parcel – too tired. Then, an hour later, Nick the Electrician turned up. So exciting! He did the final fix in the garage and then came up for the outside light. Which, coincidentally, was what my Amazon delivery was. Whilst he was out in the bitter cold, with his assistant, Beth, I was watching Blackadder’s Christmas Carol and gently sorting the house out. Next up: Scrooged – oh how I love Bill Murray!
We saw the lovely Lois today. She braved the arctic conditions of Winsley and drove down the hill to us, on the other hill… It’s been a while since she last came and I’ve been a little worried about her but she looked really well and sounded even better. Nige managed to get out of bed just before she left too which was wonderful – Lois always makes Nige smile!
With the majority of the electrics done (just waiting for the final connection on Monday) I proceeded with sorting out the under-stairs cupboard. I was just getting into the swing of it all when Marianne turned up. Ooo, tea break! We had a good natter and I showed her the bathroom, which she liked, of course. She asked if I wanted a mirror for it,
“Oh yes please!”
The only one I could think of was a rather sweet French looking one I’d seen in her spare room a week or so back. She couldn’t possibly mean that one, right? She did! How charming and wonderful she is. I gave her a lift home and came back with my reflective Christmas gift.
After taking Gabe driving into town, finishing the under-stairs cupboard, hallway, utility room and sorting out dinner I hung my new mirror. It’s heavy so I used three heavy duty hook things. It looks perfect! This evening was just Nige, Harry and myself again so we watched another 2 episodes of The Punisher and I had a few glasses of red. What a busy day! What a busy, satisfying day…
Sunday, 10th December
Oh dear me, today didn’t start brilliantly. Nige needed the loo at something like 5am but he couldn’t successfully get out of bed. Once I’d helped him to achieve his ablutions and snuggled myself back into bed, the cat began to holler… Up I got, down I went to scoop him up to put him in the shower room,
“You are way too early Eccles.”
“Yes, I know you’re beautiful and gorgeous and cold and you think it’s morning but no. 6am is too, TOO early!”
Just 5 minutes later, Nige wakes,
“I need to get up.”
“No, not yet love. It’s only 6…”
“Is it? I want my breakfast…”
“I’ll do it in an hour. Is that okay?”
“But I want to get it out of the way.”
Aarrgh, the frustration! I had to get up, before he stumbled out of bed and hurt himself. I decided to feed Eccles, feed Nige, do his meds and crawl back into bed myself – good plan and it worked.
The rest of the day was much the same as that. Nige sat downstairs for a while, ate a simple lunch and dozed off on the sofa. We had a few trips to the shower room loo but whilst Gabe was having a shower, we had to go upstairs. Harry had to help as Nige was already exhausted and we hadn’t even gone up the stairs. He decided not to come back down, choosing the bed over the sofa. Bless him, he is extraordinarily shattered. The doctor and Ann from Dorothy House warned me just how overwhelming the exhaustion can be. It’s brought on by the progression of the tumour. I guess it’s logical – the bigger it gets, the tireder you get until you stop. The end.
So this afternoon I’ve been up and down the stairs in between watching films. I forgot to do a roast dinner – well, I forgot Gabe had work at 6 and needed to eat by 5 and so, at half 4, he cooked himself something beige. I made a Cottage Pie for about 7pm. Washing up done, Gabe at work, Harry out, Nige in bed. I’m alone.
How can I do this? I don’t want to be alone… I’m no good on my own.
Monday, 11th December
Oh well, that was a better start to the day! Cat fed at 7, back to bed and not awake again until 8, with Nige. Super. I brought up his porridge and tablets (with added Co-Codamol) and then left him to sleep a bit more. I grabbed a sneaky extra lie-in downstairs too. Harry woke me up when he came downstairs. My first Christmas present arrived in the post and then, at about 11, Gabe helped Nige downstairs!
“Hey, you! Do you fancy some toast?”
“I think so.”
So he sat on the sofa, ate his marmalade on toast and drank a mug of chai. He looked better; happier. Second lot of meds and another sleep. On the sofa.
When the District Nurse arrived Nige was still asleep. We woke him enough to do his blood sugar level and then let him doze back off. She asked if we needed anything. I mentioned something to help him walk. Not to the bathroom because a frame wouldn’t fit through all the different doorways, but definitely in the kitchen. I think it’d help him feel part us all while we’re in there. So me then, as no one else cooks! While she was here, Nick the Electrician turned up. I pretty much left him to it – he knows what’s what. He wasn’t here long anyway. In barely an hour the garage was all electrified! Wow, now that’s been a long coming… Ann, from Dorothy House, dropped by too. Nige was still asleep so she didn’t stop for long, just checked the TEP form and asked after us all. Nige awoke a little after she left and I took that opportunity to nip out.
Gabe drove to the Assembly Rooms for his piano lesson and I went on to Lidl’s. I don’t know what I thought I’d find there, all I bought was a couple of Himalayan Salt cellars. On my way home I called into Homebase and Sainsbury’s for kindling and alcohol, respectively. It’s so cold, bitter in fact, I couldn’t wait to get back home. Nige was still awake though a bit shaky on his feet. He shuffles, which means he stumbles a lot and because he has a distended stomach, his balance is thrown off. But by tea time he was steadier.
I cooked a roast dinner and we all sat at the table to eat. Harry and Gabe made pudding by heating up steamed puddings and microwaving custard. To be fair, it looked bloody lovely! Nige certainly enjoyed it. The rest of the evening was spent watching TV together. So much nicer than last night, he even cuddled me as we watched. This here is what memories are made of.
Snuggle up to your loved ones. Never let them go. Always let them know they’re loved. It’s really not hard.
Tuesday, 12th December
Hmm, the morning was pretty much like yesterday only a little messier. Nige’s balance isn’t great at all and I couldn’t get him to the loo quick enough… No drama though, just a clean up. Thankfully he’d eaten his breakfast and taken his meds before so he could just snuggle down into a clean bed and fall asleep.
Later in the morning, the District Nurse from yesterday returned. She was a little concerned about Nigel’s blood sugar levels and wanted to do it again. I took her upstairs, Nige barely stirred as she pricked the end of his finger, took a drop of blood and tested it: a far better reading this time, apparently. I took the opportunity of Nigel’s sleepiness and both the boys presence, to nip into town. I needed to return a DVD to Amazon and I had a brainwave for a gift for the aforementioned boys. I wasn’t long, probably less than an hour. There’s a small cloud of guilt that follows me everywhere when I’m out of the house. It’s soul purpose is to remind me where I should be but it’s Christmas in 2 weeks and shit needs doing! Silly little cloud.
By the time I got home, Nige was ready for lunch. Harry and I tried to help him down the stairs. In the end, he did it on his bottom! Not the most gracious, I know, but certainly the safest way to descend the stairs. He stayed downstairs until bedtime, at about 11.Life feels normal when Nige is on the sofa beside me, we’re like Phil and Holly! I mean, for most of the day he was asleep but at least we could all connect. Gabe worked tonight, so it was just the three of us: Walking Dead time! It was the mid-season finale too (which Nige reminded me of) so there was tension galore. In the middle of all that, Marianne popped in on her way home from her work Christmas do. I love it when people pop in, it’s confirmation that not only are they thinking of you but that you’re worth the effort of parking up and walking up to the front door. And with 22 steps up to ours, that’s quite a commitment! Whilst Harry and Nige watched The Walking Dead, Marianne and I stood in the bathroom (I stood in the bath), admiring my beautiful Christmas mirror she gave me.
Wednesday, 13th December
In between some of the most vivid dreams and super sleep, I was helping Nige to the loo most of the night. He’s deteriorating I think though I’m not sure what the answer is. It feels very like last time, in July, but his speech isn’t as bad. Back then it was a swelling over the tumour and once the steroids kicked in, there was a massive improvement. So what, do I increase the steroids? The very medication that’s left his thigh muscles so ineffective? The permanent exhaustion is absolutely a symptom of the spreading of the tumour – there’s nothing I can do about that. Hmm. Anyway, on with the day.
Our Nick came round this morning. Not too early as I didn’t wake up until almost 11! I made him a coffee and we chatted about Nige, mum, Christmas and all that. I left him taping and filling in the garage and went off to find an oil filled radiator. I tried Homebase but realised that Screwfix was just opposite and had better deals. One radiator bought, back in the van, home, assemble said radiator… notice huge dent in the bottom, re-pack, back in the van, back to Screwfix, successfully exchanged and home. Some things are just easier than others and in stark contrast to be life right now, the radiator saga was as easy as pie.
I rushed upstairs to Nige – he was snoring away. I decided to hoover the front room and tidy up, in case Nige came down. He didn’t. Actually, it’s now 11.25pm and he’s been in bed since 11.10pm yesterday… This is a first (since July). Another first is me having to feed him. And tomorrow I’m going to have to master the art of giving a bed-bath.
So with a huge sorrow, heavy heart and wet cheeks I’m ending the day. I’m going to pour myself something alcoholic and give myself some sage advice… Tomorrow’s a new day. I’m fine, honestly, I’m just how you’d expect me to be, right? Cheers.
Thursday, 14th December
I awoke (for the umpteenth time actually) to Nige mumbling as if in pain. We’d not long returned from our third or fourth toilet stop and I was desperate to get back to that delirious, yet elusive, slumber.
“Are you in pain Nige?”
“Yes. My stomach. I need my chemistry…”
“Chemistry? What do you mean”
“Is that what I mean? Chemistry. Saravetti. Three things, you know!”
“Do you mean tablets? You don’t take any for a stomach ache…”
“You know! My February.”
“Ahh, breakfast… What would you like?”
“Yes. I’m hungry.”
I got up, fed the cat and made Nige some toast. It’s always too dry but then, it IS toast.
After our rather chatty start to the day, things continued with a shave (I’m no barber but I think I deserved a better than, “It’s the same.”) and talk of a bath later. Nick arrived as I was putting the shaver away, having tucked Nige up in bed. I made us a coffee and we had a far less interesting conversation about garage ventilation. That’s not to say I was bored, no, on any other day I’d have relished it but, well, when you’re talking to someone who knows all the correct words for things, you lose the spontaneity…At lunchtime I made a pile of bacon butties. Nige managed half of his, with Nick and Gabe dutifully polishing off all of theirs. That done, Nick went and I decided to pop out. I needed to pick up Nige’s prescription and thought I’d try and buy him a gift for Christmas. I went up to get changed,
“I need a shower.”
“A bath? Do you want that now?”
“Yeah, bath. Why not?”
So, with trepidation, I embarked on yet another adventure. Getting him into the bath was fine. He moaned about the water to begin with but as it deepened he moved around easily. It couldn’t last, he had to get out. To cut a long, painful yet hilarious story short, it took Harry and I, with a towel in the bath for friction, 15 minutes to extricate him from the bathtub. But I was so proud! Honestly, yesterday’s Nigel could not have done that. With him back in bed, I left to do my chores in town. Again, I was back within the hour. I wrapped up the newly purchased gift and then checked up on my man. He looked so much better! When I brought his dinner (fish in parsley sauce with mash) upstairs to him, he ate it all, with no help from me at all. At about quarter to 8 I helped him downstairs. Oh my heart leapt! I thought the days of Nige sitting downstairs, in the front room, with me were over after the past couple of days. But he wanted to watch Masterchef so here we were… We even had a visitor, bearing ‘weird’ gin (thanks Michelle!).
I’m not delusional, my feet are firmly planted in the shitty reality, thank you, but I take hope and joy from every little triumph – that’s human. Anyway, it gives me enormous pleasure, too, to be able to offer you all some respite from the gloomy stuff of late.
Friday, 15th December
Same old, same old. I won’t bore you with the loo visits! I will say that Nige had that stomach ache again, so maybe it isn’t just hunger pains… Anyway, I sat with him while he ate and made sure he swalloped his tablets. Then I got on with the day. I felt a little more purposeful; like I might just get stuff done. First, though, I made a vegan latte, switched on the telly-telly bunkum box and watched The BFG on Amazon. What a truly glumptious film! I was like a chidler in the middle of a delumptious phizzwizard, so captivated by Rylance’s eponymous role. The most perfect way to start the day.
After the film I joined Nick in the garage – though I should really start calling it the studio. He was giving the plaster another sand and trying to tidy up, so I helped with that and hoovered up the copious amounts of fine powder that had settled everywhere. We loaded Wendy up with bags of rubbish from wire offcuts to plaster board and, once Nick had finished and left for home, I headed off to the tip. The traffic was appalling but it did afford me some well deserved extra minutes in my van, on my own. Every cloud, right? At the tip one of the guys helped me clear it all out – actually, I barely took anything! I couldn’t help but think that today was a good day…
When I got home Nige was downstairs on the sofa and Gabe was making his lunch (porridge). I happily sat next to him and snuggled up for a short doze. A contented cwtch. My annoyance at being left to shift all the garage – studio rubble abated as I watched our boys with their dad. They really have come a long way, we all have, but due to life experiences (lack of) they had further to travel. Next job: Christmas food shopping at the sloshfunking supermarket. I despunge it all.
So whilst Gabe popped out to meet up with the lovely Alex, Harry drove us two to Morrisons. It wasn’t the murderful trogglehumper I’d imagined actually, though it wasn’t a phizzwizard either. When we got home, there were visitors! Alex was there, with Gabe and so was Gem. Ahh, so wonderful to see her. She spent a good hour too, chatting to Nige, the boys and Alex. Today just hasn’t put a foot wrong yet. What’s going on?
Just my man and me in the house tonight. I wrapped up the few gifts that arrived today whilst Nige napped on and off on the sofa. We went up to bed at the same time too. It started rather ordinarily but just kept getting better – today has taught me to always start the day with purpose. Or The BFG.
Saturday, 16th December
Aside from the 5-6 times I got up to take Nige to the loo from about 3am, I actually managed a bit of a lie-in. Consequently, Nige got his breakfast a little later and this put the timing of his meds slightly out. Nothing to worry about though, it all gets done in the end. I made a start cleaning the studio floor. I’m so easily distracted that within a few minutes I’d gone from that to scrubbing the cobwebs and decades of gunk off of the garage door. So satisfying! I did continue with the floor but time caught up with me so that’ll be a job for tomorrow. Rushing up to the house, all anxious about Nige, I had that guilty feeling thing going on. However, when I went upstairs he was still sound asleep. Right, Christmas film it is then!
Because of our late start to the day, Nige wasn’t awake enough for lunch until gone 2. He did come downstairs though, all be it on his bottom, and I made him a simple ham sandwich. His exhaustion is so consuming; he sits and eats with his eyes closed. He goes to the loo with his eyes closed. It’s as well he isn’t allowed to drive… Whilst he dozed on the sofa I watched A Monster Calls. Damn, I really should of read up on the plot beforehand. Such a beautifully filmed adaptation, filled with heart-wrenching moments; I wept and wept. That final bit, that fourth story – Conor O’Malley’s truth… yeah, hard hitting, poignant and very honest stuff. I was a little relieved that Nige was asleep.
This evening the boys both went out. It’s strange how, even when they’re going to the same party, with the same people, they leave at different times to each other. I know there’s nothing in it – Harry wanted to go to Alex’s flat whereas Gabe wanted to meet up with them all once they got to the pub, but, still, it’s a little odd. Nige went back to bed just before Gabe left, at 9. So it’s just me, Eccles, wine and a box of Ritz (half a box now…). I think I’ll sort things out down here and head on up. G’night.
Sunday, 17th December
I had an extremely restless night’s sleep and not just because of Nige. I messaged the boys at 2am (just a, ‘You okay?’ type thing) but then I spent the next 2-3 hours waiting for a reply! Whilst waiting I played a few Wordscape games, Googled ‘Morbid Aspergers’ and subsequently became engrossed in all I could find out – it’s not at all as bizarre as the name suggests, in fact I drew parallels with lots of children I’ve worked with in the past. Curiosity satisfied, I dozed for a bit, until my phone buzzed at 3.24am, with a message from Gabe;
‘Yeah :)not coming home tonight but Harrys on his way :)’
I waited, listening for the front door: nothing. At 3.59am I messaged Harry;
‘Are you home?’
I just sent it, when I heard the door open… Pfft, that text cost me 5p! At 4.09am I received;
Sleep came blissfully, as it does when you know everyone is in their place. It lasted a whole 2 hours when I awoke to Nige moaning in pain.
“Are you alright Nige?”
“No. My head hurts. I feel terrible!”
I got up and sorted him out with Co-Codamol (I fed the cat while I was downstairs too). Back upstairs Nige looked shattered, his right eyeball was larger, caused by pressure behind it from the tumour. I made sure he drank down all the pain killer. Then, as it was 6.30 anyway, I made him breakfast. I got back into bed and slept peacefully until almost 11!
The rain was incessant, quite depressing actually. I curled up on the sofa and watched rubbishy Christmas films. Harry was up and about at a reasonable time and I picked up Gabe from town at about 2.30. Lois came round with her mum to see Nige. I apologised and explained how exhausted he’s been – they’re both super lovely and we nattered about all sorts. Then, joy of joys, Nige joined us. It involved a chat, a toilet break and a dicy shuffle down the stairs but he did it and both ladies (as well as Gabe and myself) were delighted.
The film today was Fantastic Beasts and Where to Find Them. It must have been good as Nige stayed awake throughout… So, there you have it, another day that starts as one thing and ends as quite another. Long may they continue!
Monday, 18th December
Wow, great night sleep. Nige didn’t wake once for the loo and so a 7am start felt doable. Nige didn’t want breakfast straightaway so I took myself down to the studio, with a pot of watered down white paint, a brush and the radio. After each wall I popped back up to check on Nige. He was mostly asleep though I did make him breakfast so he could take his tablets. Once I finished all the walls I came back up – just the ceiling to do and the boys can help with that!
Nige came downstairs before lunch. He was more comfy laying down on the sofa so that’s what we did. After lunch I was getting a little impatient with the completion of the ceiling and decided I’d just get on with it. Then Nige decided he wanted to do the accounts. In the study. On the computer.
“Oh, so – okay. I guess I can do the painting later. Or, yeah. That’s fine. Come on then.”
I helped him to the study and into the very wheelie chair, got him logged on to our Natwest account. It’s frustrating when you have so much to do but you have to spend so much time sat, watching your loved one because if you don’t, and something happens, you just would never forgive yourself. My patience is non-ending as I accepted that the completion of the studio was less important than Nige doing the accounts. Suddenly, just as I was leaving him to it,
“I need the toilet.”
So I helped him out of the wheelie chair and guided him to the loo, and not a moment too soon. He felt rubbish, he was exhausted after the hurried shuffle to the shower room and so I got him tucked up on the sofa to snooze. By then Gabe was downstairs and Harry soon after. Both boys offered to finish the ceiling though I had to take them down and show them what I wanted. With Nige fast asleep, the three of his had a moment of relative normality in the studio and, I’m almost ashamed to admit, none of us really wanted to go back up to the house.
I made the boys tea for when they finished the ceiling, though it was mainly Harry! Then Gabe and I went to Homebase to pick up some paint. He drove – not bad. He went out not long after we returned so I left Harry with Nige and prepped the walls, ready for them to use rollers later.
“Mum, can you come up, dad’s had a fall and he’s hurt his back. I think he’s winded himself.”
I raced up the steps, into the front room. Nige was crumpled on the floor, in pain. I reassured him, felt his back to see where the pain was. Harry said he’d gone to the loo but didn’t want Harry to help him. He made it back to the front room but as he tried to sit down on the sofa, he lost balance and fell hard onto his back. With help, I managed to get him back onto the sofa. He still felt ‘terrible’ as I assured him that he was safe and that his back was okay but would hurt for a while. The amount of effort it took for him to get back up off the floor wiped him out and he was sound asleep in minutes. Back to the painting. I started Harry off and came straight back up to sit with Nige.
Gabe got home just as we were making pizzas. Nige was awake, waiting for his (made by Harry). It was lovely, the four of us, eating pizza. When he’d done, Nige went on up to bed. Gabe and Harry went down and blitzed the studio. I poured myself the first of two large Black Russians.
Tuesday, 19th December
Another great nights sleep – no toilet visits. The cat woke me at 6.30 but I wasn’t ready so put him in the shower room. Just another hour and then I was up. Nige didn’t want anything to eat but did need to pee. Getting to the bathroom was okay, though he is heavy and my right shoulder really bloody hurts at the moment. When he’d finished and we were making our way back to the bedroom, he sort of lurched over to the right, through the bedroom door which swung open, not providing him with the stability I think he thought it would. So, due to my less than 5 foot frame and his steroid pumped upper body, he tumbled to the floor, banging his arm on the bed as he went. I shouted for anyone to help but one was in the shower and the other one was asleep… In the end we managed but, as I said yesterday, the amount of effort he has to put into raising himself up from the floor renders him helpless for hours.
Breakfast is becoming a problem. I brought him up some toast because that’s what he said he wanted but he didn’t want it. So I tried to explain all the possibilities. Eventually we settled on porridge. I brought extra milk up, in case it wasn’t runny enough (it wasn’t) and fed him myself. He seems to have gone downhill since yesterday but then he did fall and bang his back and then he fell again this morning… it’s all very logical. I think.
Just before lunch the district nurse came. She was so lovely, checked Nigel’s back for us and took his blood sugar levels. She just nattered on about Christmas and our situation.
“People tend to avoid us. Not all, but you’d be surprised at the ones that do.”
“You’re right. When I lost my first husband – hmm, I haven’t really spoken about this to anyone – anyway, I was 26 and people would cross the road to avoid me…”
We both stood in the bedroom, welling up. A note to all then: rather than avoid us, be the distraction we desperately crave.
I felt better after she left. She said some very complimentary things about me which made me feel better about myself – being absent when he falls in the living and then not strong enough to get through the door intact – both things that would’ve happened anyway, eventually.
Nige didn’t want lunch. Consequently he missed his lunchtime meds. At about half 4 he’d taken himself to the loo. It took Harry and I to get him back though. Whilst he was on the toilet he said,
“I need to be in hospital.”
I felt like my heart was being screwed up into a tiny ball.
“They’ll give me injections.”
Then I think I got it. I’d said earlier that he was heavy and that I find it hard to get him to the bedroom. He told me the boys need to do more. When he heard me shout for Harry and then have to wait, he was cross. It could also have something to do with me missing his lunchtime meds too… Anyway, once I’d taken Gabe to work, I curled up beside him and explained that hospital would only do what I do. No injections. I asked if he wanted dinner,
Okay, well I can’t force him to eat. I did ring Dorothy House about increasing his steroids but I need to call tomorrow. So it was, I sat downstairs watching TV and colouring in whilst my beloved slept so deeply upstairs, in the marital bed.
I’m not sure I ever thought this would be how we’d spend our 25th Wedding Anniversary.
Happy 25th, you beautiful man xxxxx
Wednesday, 20th December
This morning Nige woke me up at 5.30, needing the loo. I’d heard one of the boys go downstairs earlier so knew one of them was awake. Turned out to be Gabe. Turned out he wasn’t awake. Anyway, needs must and, for the sake of safety, I cannot take Nige to the loo on my own. Whilst up, I sorted out his Co-Codamol and made him a smoothie. It was yay to the painkillers but nay to the smoothie. Gabe went back to bed, Nige dozed off and I went back downstairs. It was 6am.
I woke up 3 hours later to the sound of an Amazon delivery man banging on the door. Now awake, I pondered who to phone; Dorothy House said to call back this morning but also said it may be better to talk direct to our GP. Then, during the night, I started thinking that maybe Nige needed an injection of steroids from the ‘Just In Case’ case. That would mean a doctor’s visit. I rang Pulteney Practice. I was told the doctor would ring me back within the hour. Time for me to make Nige breakfast and feed it to him. The porridge was very successful yesterday so I did it again. Nige ate it all, though he did look vacant. As I laid him back down in bed the phone rang downstairs.
That was quick! I picked up the receiver – it was Ann from Dorothy House.
“Hello Lisa. How’s Nigel? I see you rang last night – everything okay?”
“Hi Ann. Actually, I’m waiting for a call from the GP, to see about increasing his steroids…”
I explained how Nige had been, how the right side of him had started to collapse again, rendering it impossible for me to manoeuvre him on my own.
“Okay, yes and I think you’re right. Let’s increase his steroids to 12mg – so 3 in the morning and 3 after lunch. Starting now.”
Brilliant. She also told me she’d pop into see us at 10.30. No sooner had I given Nige the extra tablet than the phone rang again – doctor?
“Hello Lisa, it’s Sally, the district nurse. I see you rang last night, how’s Nigel?”
I explained again, adding Ann’s input.
“Would you like us to provide you with a hospital bed for downstairs?”
“Umm, well he’s okay upstairs, although I was thinking a commode would be helpful as it’s tricky getting Nige to the loo now.”
“Absolutely. I’ll fast-track that for you now. Anything else?”
So helpful. Just 10 minutes later the phone rang again,
“Hello Mrs Lee, Doctor Brook. How can I help?”
I explained (again) but he knew it all as Ann and Sally had both contacted him. He just told me he’d adjust Nigel’s prescription and asked if there was anything else. Goodness me, what a wonderful lot of help there is out there!
Ann turned up at 10.30. She had only just taken her coat off when Harry came to get me.
“Dad needs to go to the toilet.”
Ann helped me and so saw first hand how Nige has become. Once downstairs we had a frank discussion about where we are now. Basically, and I’ll cut out anything flowery so’s to get through it, Nige is in his last 12 weeks of life. She doesn’t feel he’s started the ‘dying process’ yet but we’re not to be surprised if the increased steroids make little difference. She also asked how I feel about him dying here.
“Well, that’s been the main point of keeping him out of hospitals so… yeah, that’s what we want.”
There’s the option of respite too. This means that Nige could go to Dorothy House for a few nights to give me and the boys a break. Seems to me though, that we’ve got years ahead of us for that. It’s time with him that’s limited… Thanks, but no thanks.
There you go then. That was my morning. My afternoon was spent pottering about and sobbing. I ate dinner with Nige (he managed a little) in bed. I felt vague and disconnected, empty and scared. And bloody sad.
Thursday, 21st December
Up at 5.20 so, as Gabe helped yesterday, I woke Harry up. Just the normal toilet run and back to bed. This time I got back in too and grabbed another hours sleep. Eccles decided he needed feeding roughly 10 minutes before Nige decided the same. So up I got at half 6 to sort out my fellas. For Eccles, a rather unappetising Gourmet Fishy Pate for the senior feline and for Nige, a glass of dissolved Co-Codamol, 3 Dexamethasone, 1 huge Kepra, an Omeprazole and a bowl of porridge. Guess which one he moaned about?
“It’s too thick!”
“Well, it was lovely when I bought it up, love. But it’s taken you a while to sit up so…”
I never have been able to take criticism.
Once Harry was up I set out to buy a baby monitor. It was quite clear yesterday that Nige gets extremely anxious when he thinks no one is about. He’s very quiet, can’t get himself out of bed safely and, above all, feels vulnerable. So I decided a baby monitor would be the ideal solution. Whilst I braved the Bath traffic (4 days before Christmas), Harry waited for the anticipated delivery of the commode, not that I knew when or if it was coming today but, well, better to be prepared I thought. I called into Tesco on my way back too – that’ll save me a trip out later. As I parked up outside the house, there was a Sirona Care van in my space. Yay, commode!
I set up the monitors and Harry bought up the commode. I explained it all to Nige,
“You don’t need to do anything lovely, I can hear you from wherever I am. So you don’t need to shout anyone.”
It was quite soon after that that he needed the loo. Gabe was with me.
“Okay Nige, we’re going to use the commode.”
Gabe helped me lift him out of bed, but he was quite distressed,
“No, please, please not there. Take me to the toilet… Please…”
Reluctantly, and a little annoyed, I acquiesced. Once he was safely on the loo though, I explained things again, clearer I hope,
“Nige, this isn’t happening again okay? It’s not safe for us to keep doing this – that’s why we have the commode. This way takes at least 2 of us, I can’t move from your side in case you fall off and the door has to be open. The commode has arms to keep you safe, it’s right by the bed and I can get you on it on my own. I can’t keep lifting you Nige, I’m going to damage my back! So, next time we’ll give it a go okay?”
Harry suggested wheeling him back to the bedroom on the commode, genius as Nige needed another wee ‘en route’ so had to use it. Success. In fact the next time he needed the loo he said,
“So I go on here do I?”
With the monitor allowing me to be where I need to be quickly and the commode allowing Nige to be where he needs quickly, our day dramatically improved. Many more toilet breaks, successful and safe. Bliss. And Nige was much more relaxed too.
Friday, 22nd December
5am and Nige is moaning in pain. It doesn’t matter how many mornings start this way, I still find it distressing. I managed to get him onto the commode but his limbs are super-unresponsive at that time of the morning so I really am doing all the lifting. After 5 minutes or so he was done and I (somehow) got him back into bed. He hadn’t been to the toilet which meant I’d have to do that all again… and I did, at 6am! Time enough for me to tuck myself back under the quilt. At 7 Nige woke up again.
“It’s going to be dreadful! I need my thing.”
“What thing love? Breakfast?”
“No. My thing…”
“Do you need the loo?”
So I went to his side of the bed and pulled back the quilt,
“What are doing?”
“Well, you said you wanted the loo!”
“No! Not that, my – oh I don’t know.”
I laughed it off and got back into bed.
“What are you doing now?”
“Oh my God Nige! What do you want, breakfast?”
Lots of visitors today, with helpful stuff, practical stuff and thoughtful stuff. I sobbed my way through the kindness, slightly overwhelmed. First up was Karen, the Occupational Therapist from Dorothy House. She brought a bed bar, slide sheets and a handling belt and showed Harry and I how to use them. As we went upstairs, Harry was guiding his dad to the toilet. Whilst he was in there, Karen fitted the bed bar. Then Sally, the District Nurse turned up. Poor Nige, quite an audience gathering. But it was great; both saw first hand the trouble we have moving him so they had a far better idea of our needs. After showing us the rest of the equipment we went downstairs. They offered me respite, not Nige going into Dorothy House but they’s send a carer to sit with him anytime, whilst I get a break. I have a District Nurse coming in to bathe Nige a couple of times a week – yes please! They were so helpful and supportive, I truly felt overwhelmed by their kindness.
Later in the day, as I was lifting my gorgeous man for the umpteenth time, Brent, from up the road called in. Gabe answered the door. I heard him thank Brent and when I came downstairs there was a bottle of Cava on the table. Such a lovely thought and, again, I felt so humble to think that Nige and I are in his thoughts.
The postman delivered a happy little surprise too! A gift addressed to ‘The Lee Family’. An old work mate of Nige’s, Phil, had sent it to us. One for Nige to open on Christmas day, I think. I gave a a little something to Michelle too – the Santa outfit we bought for Eccles. It doesn’t fit him and her daughter is getting a small sausage dog so it’ll be perfect. I dropped it round and stopped for a quick glass of festive red. More tears. Oh dear.
Both boys worked tonight. Nige wouldn’t eat a dinner so I did his tablets and helped him onto the commode. It was a struggle, my back is starting to smart a bit. As I was about to go downstairs to finish my dinner, he said,
“You don’t talk to me. It’s like you can’t be bothered…”
Wow. Such powerful words.
“It’s not that I can’t be bothered lovely, it’s that I’m tired. Let me eat me dinner and I’ll come back up.”
And I did, and it was lovely. I’d got so caught up with the illness, I started to forget the man. Of course he’s lonely. So am I! Oh the irony xxx
PS He opened his gift from Phil. We’ll definitely be watching that over the next day or so x
Saturday, 23rd December
Oh my goodness, I was physically exhausted this morning. Nige woke me at 3.15am for a pee. It went rather smoothly actually, due, in part, to my ‘I’m bloody well getting you upright mister’ attitude. Honestly, I have no idea where that inner strength came from… I was hanging, eyes barely open and every bone in my body ached. We woke again at about 7, I think. I recall trying to convince Nige that he wasn’t ready for breakfast and trying to catch an extra half hour under the quilt.
“You’re hungry, aren’t you? I’ll get your breakfast.”
Crunchy Nut Cornflakes today – much more successful than porridge, I think. Aside from my aches and pains, this morning went well actually. It certainly ranks as one of the better ones over the past week. By half 7 I was sound asleep under the Snug Bug on the sofa, cat curled up on my feet, the sound of Nige gently breathing over the monitor.
At about 12 – half past – the two district nurses arrived. Nige was half asleep but able to say hello. I managed to find all they needed and then left them to bath him in peace. I even turned off the monitor! When I went up to see how they were getting on they were finishing, tidying things away.
“He’s had enough of us now!”
He had too, absolutely shattered he was. As I gave him a quick trio of kisses he smelt clean and fresh. Mmm, it’d been a while since he last washed and that must have horrified him. He slept easily until half 2. I helped him to the commode and whilst he did his stuff, I put the back rest up. We’d not had much success with this bloody thing so I determined to get it right! We managed, Nige and I, to get his bottom in the right place and I placed his legs up onto the bed in front of him: perfect! He dozed like that and I went downstairs and rustled him up a one egg omelette and a dose of Co-Codamol. I fed him about half,
“I don’t mind so much if you don’t eat dinner now you’ve eaten that!”
I picked Gabe up from Victoria Park at half 3, after I bought some more logs. I bought a LED Weeping Willow Tree too, for the back garden. It was originally £100, reduced to £80. I’d been umming and ahhing about buying it for a couple of days and today thought,
“Bugger it! I’ll buy it from the van fund…”
At the till the logs came to a tenner and the tree – wait for it – was £25! I left the shop sharpish, grinning from ear to ear. As Nige slept upstair, I assembled my incredible bargain and carried it up to the gravelled patio outside our bedroom window. I went up to our room and plugged it in – stunning. I tried to show Nige, I think he smiled. He did smile. Anyway, I smiled so that’s halfway there.
At dinner time we realised, the boys and I, that we actually have little food in the house. So off I go again! I told you I’m shit at food shopping. Nige would never have allowed us to run out of food just one day into the Christmas break! Exhausted, I ended the day in a hot bath with Radox Muscle Soak and a Opihr Gin with Ginger Ale. Not a bad way to end a Saturday.
Sunday, 24th December
3.20 loo stop this morning. I was, surprisingly, quite with it though my legs didn’t know and so I stumbled about for a bit before I made it to Nigel’s side. I emptied the commode and saw Gabe’s door still open (my way of knowing when he’s home) which alarmed me slightly as he said he wasn’t going to be late… I was about to text him when I heard him walk across the landing and close his door. There. He must’ve been downstairs. I climbed back into bed, content with all. After that, I’m not sure how long we slept, I was definitely up before 8 though. Breakfast was a repeat of yesterday with an added,
“You’re forcing me to eat!”
Damn right: no food, no steroids; no steroids, no voice: no voice, no anything. We can all ‘be’ Nige’s legs but, with the best will in the world, we cannot be his voice.
I briefly napped before waking up Gabe. He wanted to go over to Lois’ and drop off her presents but had to wrap them first. Oh man, honestly, how can he be so bad at wrapping presents?! I was having palpitations at his sheer lack of ability! Well, I had to help… just to avoid a heart attack. He drove over to Winsley, stayed for just 5 or 10 minutes and then we headed back. Nige was okay – Harry just had to do him some Co-Codamol – but other than that, fine. At about half 12 the two lovely nurses turned up again. They were a lot quicker bathing Nige this time and he was a little less anxious. I busied myself with the washing as, at this rate, Nige won’t have any clean underwear by New Year!
Nick and Shelley got here at about 1. It’s always so lovely to see them both. I see Nick quite a bit but Shell’s usually working or shattered so we don’t get to catch up often. She’s one of life’s carers, you know? It’s in her bones to care deeply about people, in the same way it isn’t in mine. She’s a genuinely, thoughtful bean, that one. Coffee in hand, there was no hesitation in her going upstairs to see Nige, and, though she must have been a little taken aback (most who know him are) she really didn’t let it show; carrying on chatting away to him, making him smile. Making me smile. What a perfect way to wile away a couple of hours; with these two lovelies.
The rest of my Christmas Eve was full of tidying and sorting. It’s not quite there but it’ll do. It’s all a bit half-arsed really, I mean I’m not sure I see the point if I can’t properly share the day with the person who, for the past 28 Christmases, has shared the planning, the excitement and the joy of Christmas with me. It’s not normal, is it, for the boys and I to be sitting eating our Christmas dinner whilst Nige sleeps upstairs on his own? These are just a fraction of the ramblings of sadness that are doing a grand job of invading my ‘joy to the World’ cortex but the words aren’t forming any coherent sentences so I’ll spare you!
Merry Christmas then. Remember, it’s got nothing to do with presents but everything to do with the present
Just like any other day, remember that… Nige awoke at 3 again, with a headache and the need to wee. Both these things are in my remit to sort out – easy stuff. Unless, of course, he decides, whilst I’m preparing his Co-Codamol, to try and get into bed.
“Oh Nigel, what have I told you? Please wait for me to help you, it just makes it so much harder…”
It does. He’s half on, half off the bed but the angle is such that I can’t easily move him to where he needs to be. Add to that the exhaustion he’s feeling, having exerted himself, solo, leaving him with no energy to help me in any way! I’m nothing, if not tenacious though, so by 10 past 3 it’s mission accomplished.
Just after 7 and it’s time for breakfast, meds and another dose of Co-Codamol. He’s really not eating much – I’ll mention it to Sally later. I was downstairs by half past, listening to him snoozing over the monitor and watching Maigret with a very potent espresso.
I had to wake the boys up at about half 10. Gabe made it downstairs first, found his meagre stocking and put the kettle on for tea. I went back upstairs to give Harry another gentle nudge: tea did it! And a bacon sandwich. This day has been long anticipated, I think, and we have all inwardly felt it needed to be gentle and non-Christmassy. I mean we have never done the whole paper hats, karaoke and party blowers, we’re more your unfussy Christmas dinner, old vinyl on the record player and board games type of family but even that, even that felt just too celebratory whilst Nige lay upstairs, oblivious to the day.
Mum and dad got here at about 3, perfect as dinner was ready to be served up. It all seemed to go well. If I’m honest, I struggled with the normality they brought to the house – the very reason I invited them! But, yeah, it left me feeling conflicted. Thankfully the boys were fabulous, chatting openly, listening, entertaining; masking my own awkwardness… A few times a took myself up to sit with Nige and not just because I thought he needed the company.
After mum and dad left, it was just us three again with our wonderful man, in our bizarre life that has become scarily normal. It’s like those hideous slippers that are likely to kill you as you negotiate the stairs but are just too bloody comfortable to get rid of. And no one else understands why you’re alright with them…
Next is New Year. I really fucking hate New Year.
It’s That F**king Time Again…
As we hurtle into the festive season I find myself desperately applying an imaginary brake whilst, simultaneously, trying to navigate my life through its potholes and detritus; to make sense of the past few months so I can attempt a happy Christmas with my man and my boys.
Since last we spoke, Nigel’s tumour has continued to wreak havoc on his extraordinary brain, causing more focal seizures and the eradication of more words from his vocabulary. His steroids are up to 8mg daily which, though they help with relieving the pressure on the brain, have the undesirable side-effect of facial swelling – truly upsetting Nige every time he passes a mirror. He sleeps more and more – again, something he just can’t cope with, being of the mind that he should be awake all day and asleep all night. We have explained (Gabe, Harry, the district nurse and I) that it’s perfectly normal and, in fact, denying your body the sleep it needs can be very counter-productive. But he’s not having any of it, choosing instead to believe what his poorly brain is telling him… You pick your battles though and, frankly, if he wants to spend the day fighting sleep and consequently being grumpy, well, I can live with that.
November has been a busy month, all those jobs Nige has been desperately trying to sort out are well on the way to completion. Matt was here for two weeks, fitting a new bathroom upstairs, which coincided with the roofers replacing the fascias and guttering and the escalation of Nigel’s seizures. I made all the workmen aware of his illness and just asked them to be polite but un-intrusive. I knew Matt found it hard – having known us for almost a decade, seeing Nige so altered both mentally and physically shocked and saddened him. He didn’t say that of course, but it was there, on his face. A look I’m familiar with now, though it breaks me up inside every time I see it. After two weeks and a few more positive encounters with my man, Matt relaxed, adjusted and embraced it all. I knew he would – people who care do. But a great, gloomy cloud sat above Nige in November and it took a visit to see Dr Brooks before I finally figured it out. A proper ‘d’oh’ moment.
We sat in the small room, discussing tablets and how things were going. Nige expressed his annoyance at having to take so many tablets.
So Dr Brooks suggested we keep the same dose but in larger (so fewer) tablets. As I explained this, I could see it wasn’t going in and all the while Nige sobbed intermittently. At that precise moment, I recognised in him the same thing I have carried around with myself for 20-30 years; depression and loneliness. Having all those builders around yet none of them interacting with you – can you imagine? Not being able to wander outside and have a natter or offer them tea and coffee. Unable to pop out to the shops for a bit to get away from the disruption. Just napping on the sofa; vulnerable in your own home. It’s fucking unforgivable actually. As it all crashed into my head and formed an orderly conclusion I settled on the solution: Nigel needs company whilst I’m at work. He has two sons in the house who must start engaging with him more. He has friends and family who can visit too. It can’t all be me, one depressive to another doesn’t sound too healthy. Then I thought,
“Maybe I need company too…”
Yes, I think it’s clear. When Nige deteriorates, so do I and so when Nige needs extra help, so do I. There.
We leave November better than we found it. Harry (still very much in limbo) has spent more time with his dad, playing PS4 games with him and entering some pretty surreal discussions! Gabe continues to offer him hot drinks and curries. Me? Well, I’m still doing everything else but with a slightly less burdened heart. Which is good.
Who Looks After You?
“Who looks after you?” is a question I’m asked most weeks and I usually answer with a smile and a shrug but actually the truth is I’m looked after by everyone and no one.
Family first. I’m not alone as both boys are still living at home and I’m hugely grateful for that. I have my big brother, Nick, who’s doing lots of work around the house so he’s a regular visitor too. The three of them fulfill very different needs in me: Gabriel has a huge sense of justice and helps me to pick my way through my the thoughts that bombard my brain continually, whilst Harry allows me to say out loud my darker, more unthinkable thoughts with no judgement and tremendous humour. They find their dad’s deterioration hard to watch, of course, and so when I’m at work they tend to stay in their bedroom. Although I would prefer them to take a more active approach to Nigel’s care, I’m not keen on playing the ‘guilt’ card. Besides, what do I really know? Could be their laid back approach that’s keeping Nige sane… I mean, to have the three of us constantly watching him isn’t exactly conducive to that relaxed, calming environment we’ve strived so hard for in the past twelve or so months. There’s a price for that, by the way, for the normality we’ve upheld. It’s being charged to our personal lives – Harry’s all spent out, I’m on a low budget and Gabe’s actually managing to save. Between us we’ll even each other out. Through Gabe, there’s Lois. Our very own Little Blue Wolf. I’m not sure I’ve ever met a lovelier person. Honestly, for one so young, so vulnerable, she takes altruism to a whole new level. A week seldom goes by without a message on my phone from Lo, checking up on me and seeing how things are; offering to relieve Nigel’s boredom with impromptu visits… With her own illnesses to combat, I am both amazed and honoured to include her as part of our family, and that extends to her own family too. Then there’s Nick. He helps without knowing it, aside from the obvious help he’s giving with the garage of course. It takes a huge amount of courage to continue to embrace a broken family such as ours. After a week or two away, working or travelling, he bounces back up our steps, not knowing how we are, how Nige looks or sounds: how the cancer has progressed. I can tell by his face if there’s a difference (being with Nige constantly clouds my vision of progression) and that’s an enormous help too. Spiritually, Nick provides me with a constant link with my other self; the Barnes girl with the ‘Doc Martens and roll-up’ attitude who I know will be a huge help to me in the coming months and years. I feel protected when he’s near, without him doing or even saying anything. Which is perfect as he talks very little!
Never one to surround myself with friends, I have found myself quite overwhelmed by the few I do have: Marianne checks in like a warm arm around my shoulder, allowing me to speak or not speak, hearing the silences as well as the rants. She’s done this for me from the very beginning, choosing to ignore my request for isolation and giving me what I actually need; support, as well as the occasional coffee and cake outing. She’s smart and bright, sugar-coats nothing and wastes no words. We’re like two peas in a pod. Gemma gives me her naive perspective on things, paring it down to it’s core. She has a need to understand me, and I do too, so chatting with her often reveals things about me I never knew! She has thanked me over the years for all I have taught her, little understanding just how much I have learned from her. Though, of late, I think she’s realised. Michelle is a haven of fresh air and woodland walks, with the occasional bottle of wine thrown in. She symbolises a future of sorts, my future here, on the Hill, for though I’ve known her for the past five years, our friendship has only really grown since Nigel’s diagnosis. Since then we’ve walked miles of a morning with her dog, shared stories of our pasts and even completed a 26 mile Hike for Macmillan together.
There are more, of course, but these are the friends and family who take care of me without first having to ask. They all just shove their noses into my business, make me face uncomfortable truths and listen. I don’t know how I’d manage without them. The thing is, I don’t do a great job at managing with them either. Oh I think I exude strength and I know I have everybody’s admiration but I am unravelling. I can feel the facade cracking, the tears are constantly waiting to drop and in the darker hours drop, they do. No one can help me. Not with this bit. There are no words, you see. It’s all emotions; raw and terrifying. Now, I know some of you reading this will offer me help (and thank you) but, honestly, I’m right. This bit is for me. If I don’t have a part of myself that is unfixable then how do I know that I ever went on this journey? Where’s my scar? It’s for me to figure out and then to fix, when I’m ready. And I absolutely will. I just can’t tell you when.
So if I come across a little unhinged from time to time, that is just me looking for the best way to manage my raw emotions. It’s temporary (I hope…) and once all the pieces have fallen back into place, I’ll be fine. We will be fine.
Love Comes In Many Forms
You say I don’t cry,
I’m amazing and strong.
You are oh, so proud of the fact.
But I want you to know,
That you are totally wrong,
Most of my life is an act.
You think this because,
When you’re here, you are not,
You hear me, but you don’t listen.
But I want you to know,
We are the best we have got,
Not all of life’s treasures glisten.
Should I list all the times that my life falls apart,
Should I record every tear, every ache in my heart?
Is that what you want,
And is that what you need?
To see my damp eyes sad and raw?
‘Cause I want you to know,
You can visit here to read,
Or push unannounced through our door.
But you don’t, you won’t.
Of that I am resolved.
But keep your guilt under your hat.
‘Cause I want you to know,
You’re eternally absolved.
Unconditional love’n all that.
I made it! Seven weeks of getting up, getting dressed and getting through the Bath traffic to work. I’m not going to lie, there were days I thought, “No.” But with with my eyes on the future and my foot on the accelerator, I made it.
Every first week should be a three day one – a perfect length for my reintroduction to the workplace. Time enough to get the measure of the children, of the new staff and to source resources for displays. The workplace has altered significantly and for the better. With a larger staffroom in the middle of the school, both KS1 and KS2 can mix together, giving a brilliant feeling of continuity throughout the school. It also allowed me to be fairly anonymous for that first week, to observe old colleagues and familiarise myself with their personalities, quirks and patterns. The children in my class are all pretty fabulous. There are a particular group of girls who sit together and they are so bright! I mean, not just academically but socially too. You can have a proper conversation with them and there’s no whining, whinging or sulkiness – bliss and totally without precedent for me. Sure, there’s a few tricky ones but so low level that in any other year of my career they wouldn’t even warrant a mention! Anyway, the children are my favourite bit of my job – all kinds, all personalities, all welcome. The new staff though, well I do take a while to warm up to adults. By the end of this week I really hadn’t formed much of an opinion. What? It was only a three day week, remember?
Nige had his first week at the gym too. In fact, his first visit was on my first day back – Wednesday. He did really well; walked on the treadmill, did five or six minutes on a bike and then Chris (his Physio) worked on his balance. I stayed with him, not really for him but more for me. I know that if I asked him later about the session he wouldn’t remember much of what he did. At least now I know what he is capable of, which is pretty heartening.
Oh how quickly we get back into our stride! I park the Citroen a way down Warminster Road when I get home from work to make me walk a bit. It’s working actually and that short stroll in the morning is just enough to ease me gently into the world of others. As I settle into my new routine, so the children do too. One afternoon a week, when neither Mr B or I are in class, they relax a little too much and just the odd one or two let themselves down. Consistency is the key, and so, at just the second week, I started to seriously think about returning full time. There! I absolutely said this would happen and I cannot allow it. When I’m stood in the playground or working with a group in the classroom, it seems perfectly logical, but once I get into the car, engage gear and pull away, I see the reality of it all. As I get ever closer to home, life shifts into full focus and full time work is just way too blurry.
Nigel’s second gym session and I left him there, giving him some privacy to natter to someone other than me and giving Chris the opportunity to get to know Nige on a 1:1 basis. I drove over to Hartley Farm and had a coffee. It’s such a pretty place but a tad pricey so maybe it won’t be a weekly thing… we’ll see. It was my birthday on Friday and the very wonderful Marianne brought food round for a vegan, birthday meal! Nige loved chatting to Mike and I just felt incredibly lucky to have her in my life. Then, on Saturday Nige and the boys took me to Dough for pizza. Well, I guess I took us. In the van! So there we were; individually broken and collectively barely holding things together but sat in that restaurant, on a busy Saturday lunchtime, sharing idle small talk with the staff and each other… it was quite possibly the most normal we’ve been in yonks.
The plateau. You know, where things just cruise along, no bumps in the road, no nasty surprises, just moving gently forward. That’s the goal, of course, and I was relieved to have got there so quickly. Nige too was coming on in leaps and bounds at the gym, affording me an extra hour of solitude, midweek, to enjoy a coffee and a mooch. A fortnight of this and then we headed back into the world of Glioblastoma.
It was Sunday, a day or two after my dad’s birthday so we were heading over to Calne to deliver his present. We stopped at Sainsbury’s in Chippenham, to save us having to call in on our way home. As soon as Nige got out of the van he looked a bit confused, then, after just a few steps, his whole right side gave in. Thankfully I was stood on that side and took Nigel’s weight as he slowly crumpled into me. A wonderful lady asked if I needed help.
She helped me get Nige to the shop foyer, where another lady got us a wheelchair.
“Shall I phone for an ambulance?”
“No thanks. He’ll be fine – he has a brain tumour and this is – yeah. Thank you but we’re fine…”
After Nigel’s last stint in hospital, I promised him that he wouldn’t go in again…
He was okay afterwards, we spent a few hours at mum and dad’s and then came home. Later on that evening the same thing happened again, smaller but clearly a seizure of sorts.
It was very novel to be going into work the day after Nige was taken ill. I told a few of my colleagues what had happened and was overwhelmed by their words of kindness. I hadn’t really thought I’d been isolated until then. The kids in class are still awesome. Yes, they’re finding their mischief but with that comes their personality and their story. Super little people.
Nige has increased his gym sessions to twice a week and his steroids and anti seizure medication has increased too. As I sit here, having survived term one alongside my beloved’s progressive illness I feel quite proud. Fucking exhausted. But proud.
NB The cat, Eccles, has made a FULL recovery and meows continually for food, food, FOOD!
Well I knew this day would come but, as you know, I’ve said that before… And if that day had actually come, then this one wouldn’t have. If you follow me.
The new school year usually starts with at least one inset day to ease everyone in gently and this year we got two. Perfect for someone worried about connecting with anyone other than family and who hasn’t had to put an outfit together in almost a year.
So, up early on Monday and managed to cobble an outfit together that looked pretty decent. Nige made me a coffee and we chatted about the weather and what was happening in the world. We haven’t done that in quite a while, Nige preferring to bring our coffee up to bed. At 8.15, with mixed emotions, I grabbed my things and gave him a kiss goodbye.
“Have a nice day!”
“I’ll be home by 1…”
It’s strange. As I sat in the hall, listening to Sue outline the new term and read through policies read through many times before, the past year just melted away. As if I’d always been in that seat, at that table, in that hall, with Gemma to my right and a bowl of Skittles in front of me. Weird. Then, after that was done we had to go to our classes. Mark wasn’t in so I was left pretty much to my own devices, just a few jobs left for me to tackle. My mind drifted back to last year, when I sat in the very same classroom, cutting out letters for display boards and preparing my desk for the rest of the first week. Only this time there was no desk to prepare – a years hiatus meant that everything at Roundhill had moved on without me – and my class too were grown up by a year.
As promised, I was home by 1pm. I felt quite accomplished, as I trundled along in my van. Refreshed, renewed, hopeful that this little bit of old normality might just balance up the abnormality of my life. For though it felt oddly surreal at work that morning, as I opened the door and was greeted by Harry and Gabe still in their pyjamas and an emotional Nigel, with his hearty,
“Hiya! It’s lovely to see you again,”
I reached up on my tiptoes, planted a soft kiss on his cheek and thought,
Nah, this is surreal, right here. Back there? That’s normal…
I’m going to be fine. I can’t speak for everyone else though.
Who are you and what have you done with Lisa?
In conversations with myself, I have formed many analogies. The analogy of an analogy is a familiar scenario that perfectly describes the indescribable, nay, ludicrous scenario you actually find yourself in. It somehow normalises the whole thing, making you feel less insane and on a par with the world around you.
“You remember Terms of Endearment, that tearjerker film of the 80s, where Debra Winger lay dying with loved ones stifling sobs? Or Guardians of the Galaxy with a young Peter Quill refusing to watch his mother pass away? Well, we were there; seated uncertainly around Nigel’s hospital bed, sharing stories, all raw emotion and tears. Disbelief and hopelessness building up within, filling every internal void. Then, as if the universe needed to take a pee, the pause button was pressed. Whilst on ‘pause’ we seem to have entered a different dimension, where things appear normal. Where Nige is well, working in the garden and sawing up wood for a winter he may not see and, instead it’s the family cat that’s taken on his illness; lying on his deathbed, fighting for every breathe… But we can’t appreciate any of this or capitalise on Nigel’s good health because we are too busy listening for the flush of the toilet, for the universe to return and for the play button to be hit once more.”
When I say life appears to be normal I mean that Nigel appears to be well… from deathbed to flowerbed in just a few weeks. The steroids have made him emotional of course, and the tumour is still wreaking havoc with his memory and vocabulary but in comparison to the Nigel on pause, this one is fucking dandy. But as we navigate through this other world, we still seem to be stuck eternally in the real one, paused or not. The only difference is that the bed covers have changed from being thin, blue hospital blankets to a deluxe feather quilt, the view is no longer a square courtyard but wild birds and flowers blending into the woods at the back of our house and the visitors aren’t crammed around the bed but coming and going, with room to move around each other. Everything else is the same though; same tears waiting to spill forth, same emotions coursing through our bodies and the exact same illness trying to steal the life of a man beloved to us all.
“It is taking every fibre of my being to resist curling up in an embryonic pose in the centre of the bed, with the quilt heavy on top of me and not move forever. To open the post box, retrieve the mail and open it. To care even the tiniest bit about my appearance. But I’m winning, I think. At least, I am at the moment. You need to do the same Harry, ‘always forward, never back.'”
So while we await the inevitable in one world, we have the opportunity to create many more memories in this one. We’ve been given a golden ticket to a world where we still have the husband and father we so adore, with added quirks and oddities. But there is a cost; Eccles. In essence we have swapped one deathbed for another and, though terribly sad, I’m okay with that. Eccles, our lone cat, has dodged many bullets in his 16 years and has led a life of unparalleled decadence. Anyway, in cat years he’s 76 and by anyones reckoning, that’s a far more palatable life expectancy than 54.
That’s your lot. For now anyway.
Life, Death, Life.
The very last place I expected to be on a Tuesday evening was in a tiny room, with an insufficient amount of tissues and, as it turned out, hope. Whilst Nige lay on a hospital bed, Harrison and I set our faces and allowed the words to wash over us. A few phrases seeped through – one in particular rang out,
‘We can’t say for sure but he probably won’t make it through the night…’
Not enough tissues.
Gabriel needed fetching first; everyone in one place, this place. As I made my way back to the van, I returned my brother’s call. It was as incoherent as it gets I’m afraid – poor bugger definitely wasn’t expecting that. After that the ranting continued. It continued as I drove past Victoria Park. consumed me along Julian Road. It took my breathe as I sat at the lights on London Road and it burst out of me as I grabbed Gabe in the doorway of our home. All I remember of the journey back to A & E was Gabe sobbing loudly and rubbing his face, then, as we drove past the hospital entrance I saw Harry, waiting for us, his face still set, his mouth tensing up as he drew on a roll up. When we reached him he offered monosyllabic words of comfort to his brother but his eyes betrayed his inner stillness. As Gabe and I fell apart on the outside, Harry did the same from the inside. In this dangerously damaged state we huddled around Nigel’s bed and started on the final path of our cancer journey.
The staff asked about family.
‘Just us really…’
Imagine my surprise when, at 3.30am (Wednesday), his mum turned up with his three sisters. Our eight hour vigil of just us three and Lois was crudely broken up by their arrival. Our dignified grief mocked by the ridiculous bickering of sisters who, until now, had shown absolutely no interest in making amends for the years of wrongs laid by them upon our beloved. I had some sympathy for his mum, of course, as she cut a forlorn figure leaning over Nigel. She’s been poorly herself of late and watching her trying to grab back a long-since gone relationship with her son was heartbreaking. But then she asked a sobbing Gabriel, ‘What’s wrong Gabe?’ The sisters put it down to absent mindedness but for Gabe it was a flash back to those years of torment bestowed upon him by her and for me it was a reminder of how she had disowned Nige in a letter upon the word of a now discredited brother. The words of that letter, in her own hand, burned into my head. As I met Gabe’s gaze I knew they all just had to fuck off.
‘I swear, if you die now, with them clawing at you, I will punch them all in the face.’
was my uncharitable and overwhelming thought. Gabe did better though, he asked them to leave. And they did.
As calm descended once again and Nige had clearly made it through the night, we made a plan. Neither Harry or Gabe really wanted to leave but both had, by then, been awake for over 24 hours and both needed rest. Gabe chose to sleep for a bit in the van whilst Harry opted for a mind-clearing hour and a half walk home. He’d barely put his head on the pillow before Nick turned up at 10am and Harry came back to the hospital with him. By then Nige was sitting up communicating well. It was just bizarre how the more drained we became, the livelier Nige appeared; as if our love was the ultimate drug. Though I may have to concede much of the credit to steroids. By the time Seb and Anoushka arrived for a visit later that evening Gabe was home in bed, Harry was still hanging in there and Nige was looking much more like himself. Before our visitors left (taking Harry with them) we were moved to ASU. We had another side room which we were told we’d have so we could say our goodbyes privately, and they even brought me in a bed. After a straight forty plus hours awake I finally managed to put my head down.
Happy birthday to Gabe! He had a great time, I think. He and Alex called in to see Nige at about midnight and the three of them sat up chatting and scoffing sweets until 2am. I drifted in and out but with a happy heart.
A surprise visit from an Oncologist this morning. I registered this, telling him that I was told we wouldn’t be bothered by anyone, that all the nurses had been given permission to prescribe any drugs we may need. He replied,
‘When I read the notes on your husband I didn’t expect to walk in a room and see someone sat up, chatting, smiling and who could move his arms and legs.’
He ordered another MRI scan for a comparison and set about treatment. I mean positive treatment. When I asked about the bleed into the tumour he said there wasn’t one… He went so far as to tell me that the CT Scan was misinterpreted and that there was a good chance he’d be coming home. Later that day another Oncologist visited us and corroborated what her colleague had told me, adding that we may also be able to continue with the PCV Chemotherapy Treatment.
‘Wait… What?? But we were told to say our goodbyes…’
‘No, no. We think there’s more to be done. We’ll move you onto the Oncology Ward and work out the correct dose of steroids. You should be home soon.’
Can you even comprehend that? I mean really?? We spent from 8pm Tuesday until 8pm Thursday coming to terms with this gorgeous man’s imminent death. We endured an incredibly unsettling and awkward ‘final’ visit from his estranged family that, quite frankly, none of us want repeated. Each of us found a space within ourselves to temporarily carry the grief until we had the time to lay it bare and go through it all together. But suddenly we didn’t need that – we were just left with the raw grief within us, with no plan at all on how to offload it. Incredulous, delighted, bewildered, we fragmented. I stayed with Nige whilst the boys went home. Both went on to deal with the colossal weight of emotions in their own way. It’s no surprise at all that the one who had remained as stoic and as in control as humanly possible was the one to crash and burn.
As Nige continued to defy the odds and regain his former strength, Harry disappeared. Gabe kept in contact with me throughout all this and so between us we managed to resolve the situation. I say ‘resolve’, there’s still much to battle through but suffice to say, by 4am, Saturday morning he was home safe. Sound may take a while but hey, this is not the week to be taken by surprise.
Saturday and Sunday
We have a brand new Harry! One who talks, one who sobs openly and one who suddenly seems to be able to handle our altered situation as well as finding himself newly single. It’s shifted the brotherly relationship somewhat too, which has always been a disjointed one. As a consequence to everything I came off Facebook. Honestly, I was shocked at just how obsessed we all get with other peoples lives; how we offer words of support to relative strangers really and yet, right in front of our eyes our own flesh and blood are struggling to be heard. It’s just so wrong that if Harry had written a status about how he was feeling he’d have had oodles of support. But he didn’t so he was left unheard. I feel utterly shit about that and so yeah. No more Facebook, time to stop looking at the world though laptops and mobiles. Time to put them away and look people in the eye, read between the lines. Less statuses, more words.
Today Nige started to slur his speech a bit. I think they may have reduced his steroids a bit too quickly. Thankfully we moved to the William Budd Ward, on Oncology, where the Oncologist upped the steroids. Harry and I were with him as they wheeled his bed into ‘Bay 3’ and the distress on his face was plain to see. He wasn’t disappointed but, rather, confused. He had no idea really on what to expect but he just said he thought it would be ‘different’. Sensing his distress, the three other blokes on the ward stepped forward to make him feel better; a wonderfully courageous thing to do given the advanced stage of their own illnesses. Lionel in particular took a shine to Nige, and Nige really liked him. Pete the Pilot too offered many sage words but Rob (or Leslie) looked bewildered and bombarded me with questions about his upcoming chemotherapy treatment. It’s fair to say that some proper bonding happened on that ward over the couple nights Nige was there and I can honestly say I’d never met three braver men.
For the first time in a week I spent the night at home. Comfy, yes, but I’d sooner have been with my man.
Harry continued to improve in spirit. Eating and sleeping still weren’t on the menu but there’s time. The lovely Lionel was off having treatment when we got to the hospital. When he returned he looked like a shell of a man. It reminded me of One Flew Over the Cuckoos Nest. When his son arrived he reached his arms out and just sobbed and sobbed on his chest. The tears just flowed from both mine and Nigel’s eyes. Poor old Lionel, poor, poor lovely Lionel.
Wednesday – Discharge Day
Emotions are very mixed up on discharge day. I know this from experience! This morning Harry and I turned up to a teary Nige. Lovely Lionel had had an awful night, battling the effects of all the radioactive shit coursing through his body. Nige spent a couple of hours holding his hand, giving him something to focus on. It took it’s toll on him though and even after we returned home he talked about how scared he was of Lionel dying.
So there you have it, our fucked up week during which we almost lost one, rescued another and learned more than you can ever know about ourselves. We’re home now, with the promise of Dorothy House support and a far more open approach to each other.
PS Still no Facebook – it feels great 🙂
PCV Chemotherapy Treatment
We knew that the tumour would return, of course, and we knew there was another treatment to try after the last lot. I guess that I thought the last lot of chemo would’ve been this lot – PCV – as it’s specifically for brain tumours. However, it seems we were to endure the first and second round of chemo before this more gruelling one of six cycles lasting 42 days.
So what is it?
- P – Procarbazine (taken at home)
- C – Lomustine or CCNU (taken on day one at home
- V – Vincristine (given on day one through a cannula at the Chemotherapy Day Unit)
A week before our first cycle Nige had a blood test. This needs to be done before each of the six cycles to ensure that he’s okay to proceed. Then on the 24th July, at 2.15pm, he took his Ondansetron (anti sickness) pill. They tell you to take this between 30 and 60 minutes before the treatment although I never give it an hour before in case the appointments are running a bit late. Nigel’s appointment was at 3pm but we would’ve been fine until quarter past. The 24th was a mixed up kind of day. Firstly, it was Harrison’s 24th birthday – 24! I was so thankful his girlfriend was down for a few days and we did have some birthday giggles in the morning whilst Nige slept. But it seems that the tumour has really taken hold of him, causing his speech to slow down and even affecting his eyesight. Still, we made it to the RUH and Nige shuffled into the Oncology Unit where we waited just a short time before being called through to the Chemotherapy Day Unit. Our chemo nurse was Annie and she went to great lengths to explain what was going to happen. Apart from struggling to remember his name (slightly alarming) Nige coped brilliantly. The cannula was placed first time and after just 20 minutes or so we were all done. Annie brought over the bag of drugs that needed to go home – Procarbazine, Limustine, Ondansetron and Metoclopramide – and went through the dosage and timings with me:
- Day 1 – Ondansetron (home), Vincristine (hospital), Ondansetron & 5 x Lomustine (home)
- Day 2 – (all at home) Ondansetron, 4 x Procarbazine (after food), Ondansetron
- Day 3 – (all at home) Ondansetron, 4 x Procarbazine (after food), Ondansetron
- Day 4 – (home) 4 x Procarbazine (after food)
- Day 5 – (home) 4 x Procarbazine (after food)
- Day 6 – (home) 4 x Procarbazine (after food)
- Day 7 – (home) 4 x Procarbazine (after food)
- Day 8 – (home) 4 x Procarbazine (after food)
- Day 9 – (home) 3 x Procarbazine (after food)
- Day 10 – (home) 3 x Procarbazine (after food)
After which there’s 32 days rest before it all starts again.
In the hospital we were given a ‘Chemotherapy Diary’. It’s full of all Nigel’s medication and has two pages of symptoms to check for. If he’s experiencing any highlighted in yellow, I need to ring the Chemotherapy Helpline. The problem I have here is that many of the symptoms, I feel, are related to the tumour and not the chemo… It’s so tricky to judge. Let me explain.
When we returned from the hospital, where he was already a bit disorientated and had spoken slowly, he went to bed and wasn’t hungry at all. In fact I struggled to get him to take his medication as he was so sleepy! Tuesday, he ate breakfast in bed and got up just before lunch, when he ate a tuna mayonnaise salad sandwich. He managed a large dinner too, going to bed at about 10pm. Hmmm, things were looking up. Wednesday he awoke with a headache and refused breakfast but went on to eat a large lunch and dinner. He went to bed at 7.30 though. By the end of the week it was clear that the chemo induced tiredness had kicked in but that the appetite was still there. Nige was struggling to use cutlery though and I definitely need to rethink soup in bed.
By Tuesday, 1st August things were looking grim. Virtually no speech and some very crooked facial expressions, along with a complete collapse down the right side of Nigel’s body induced me to call 999. And not a moment too soon. We were admitted to hospital at 7.30pm and Nige was rushed through for a CT scan.
Dear, well, you know who you are,
When the love of your life is touched by cancer – not touched, smashed – by cancer, the response of those who know you best is telling. From the precious few who have chosen you to the mish-mash many who are yours by right, the reactions are somewhat varied and absolutely no general rule can be applied.
And so it was, that on September the 12th, I entered the Twilight Zone: A world where everything still appeared to be the same but that me and mine saw differently. It’s nigh on impossible to explain; that slack-jaw moment in time where realities collide and you see a whole future of hospital corridors, white jackets and stethoscopes stretching out in front of you. Understanding is everything, I’m told. Yet too much clarity, in my opinion, is terrifying.
On arriving home, the diagnosis is shared with the children. Although adults now, they are still children within the home and so the imparting of such ridiculous and heart-crushing news brought with it tears and hugs. Where one was filled with a disbelief buoyed with inner strength, the other stayed calm and collected with a glowing inner optimism. Both managed to fill the gaps within my own self as we resolutely stood together, prepared to face down all that was to come. It is little wonder, then, that I craved to keep my world within these walls for as long as possible. Everyone at arms length or, as it, turned out, at the end of a text message. With the exception of my mum (who doesn’t have a mobile), all communication with those we love was conducted via texts, WhatsApp or emails and afforded us all with breathing space to compose our reactions, our emotions. Thank goodness for Marianne! My oldest friend who instinctively visited and gave her arms to comfort me, her words to ground us and her tears to join ours. I never knew how powerful human interaction at such a time can be; how essential it is, in fact, to be in contact with others who do have a mutual interest in the one you care so deeply about. In just that time alone, on my 47th birthday, Marianne made me realise that the world still existed, spinning continually, witnessing all manner of scenarios, scenarios that, quite frankly, eclipse our own.
“Time to pull up your big-girl pants and get on with it!”
Over the following weeks I was praised by all who met me on my courage and strength. Friends who never expected to see me in this situation were amazed at my ability to show humour, patience and compassion. For me though, it was no surprise. I have forever been a practical soul, darkly funny with a massive capacity for compassion. What I have never been is wasteful. By that I mean I don’t waste my compassion on those unworthy – and I do have very high and exacting standards. Maybe that’s where the amazement from friends came from. Maybe they have just never been worthy of my softer side…
The awake craniotomy surgery was scheduled for October the 7th. Just me and my man for this part of the journey. He left my side at half 10 and walked to the theatre with his team. I loitered in and around Southmead, intermittently placing myself on seats situated around the Atrium and watched patients and visitors in various states come and go. I finished a book I’d been given by a friend and only when it was almost time for the surgery to be done did I make my way back to Gate 20. I sat with others in the waiting room; a middle aged couple talking continually on their phones and a heavy-set bloke who was clearly disgruntled. I guess we all had a story but no one wanted to share. Not me anyway. On seeing Dr Barua, no suit this time but in his scrubs, I was suddenly aware of my solitude. Whatever he has to tell me, I’m to hear it alone. The gravity of that thought didn’t pull me down quite as much as you’d think. I knew that to have anyone stay with me for the nine hour day (six of which was just me) was an absolute farce and so it followed that of course I was to receive whatever news was to come alone. I was okay with that. At just after 5pm he told me the surgery went “really well”. At about 6pm I was by my man’s side, talking and kissing and eventually feeding him a roast dinner. By 9pm I was home with the boys, talking and hugging and eventually sleeping. But somewhere in-between that something beautiful happened. Not to you well-adjusted lot, I’m sure, but to me it was beautiful: my big brother rang me.
As I left Dr Barua, my heart singing and pounding, my feet aching and flying as a descended the stairway, my phone rang.
“Hello Liz, how’d it go?”
Oh the joy to be able to share the news so quickly and to such a willing correspondent, I can’t begin to tell you my relief. The whole day I’d not spoken, except to answer medical questions or to confirm dates or times. And there it was, just five words to bring me back to the world of people. But that wasn’t all that phone call meant to me. You see Nick had no idea what the outcome would be. He couldn’t have known it was a success, it could’ve gone as bad as a brain operation could go – he could have got a hysterical, bereft little sister howling down the phone at him. I’ll let that just sink in for a while.
I think that phone call he made to me at that precise time was the most brilliant thing he has done for me to date. And that’s something.
Up until the first appointment with Dr Barua at Southmead on September the 27th, Nige had been adamant that all in Nottingham need not be told of his illness. It’s astounding to me that this was such an easy wish to comply with, that our connection with family there was so vague we could go for weeks and not be asked a single thing about our health or wellbeing. Not a phone call, text message, birthday cards… There was, of course, a slim chance his mum would phone and then I would need to explain (at this point Nige didn’t answer any phone) but in all those weeks, that never happened. On being told on the 27th, that the tumour appeared to be a particularly aggressive cancerous one on the frontal lobe of the brain and incredibly difficult to remove, we were advised that this was a ‘life changing diagnosis’ and so, together, we decided Nottingham needed to know.
I made the initial phone call alone. There really was only one person to talk to, that we most trusted to sympathetically share the news with his mum, and that was Sandra, Nigel’s younger sister. She did an admirable job, consoling, listening and, by the end, releasing all her tears and sadness for me to share in. Of all my dealings with the family over the last 27 years, this was the most connected I’d ever felt. Bizarre, that.
The next evening I rang Nigel’s mum. I knew she’d been told and I imagined all the questions she would have that Sandra couldn’t have answered. In complete contrast to the previous night, this was a measured, calm exchange of words. I purposely didn’t use the word cold because the implication of that is of an uncaring nature and I don’t believe that to be the case at all. I have a very frank and honest relationship with my mother-in-law, as I have said before, I waste no needless platitudes or compassion on the unworthy. She is a soul, however, who deserves the compassion of others yet seldom knows how to deal with it – I get that completely, in that respect I think we’re similar. But in just about every other, we are not. After that first call she rang often. It wasn’t until her third call that she asked how her grandsons were coping.
By this point we were very open to visitors. Gabriel had spoken to his dad about the full implications of his condition, about how to accept it in order to fight it and about the strength to be got from human interaction. I proudly listened, silently sobbed and completely agreed with all he said and as a result, we cried openly and accepted the hugging arms of all who crossed our threshold, from close friends and family to work colleagues and bosses. We welcomed it all. To this date though (a fortnight post-op) we haven’t had the pleasure of a visit from the Midlands.
The morning after Nigel’s very successful operation we descended en masse with a tub of his Rhubarb and Custard sweets. He was up and shuffling about, bound in a rather fetching head bandage and with his Louis XIV stockings to prevent thrombosis or something. His language was foul though; every other word being ‘fuck’ or ‘fucking’ and his choice adjective to describe those he disliked being ‘cunt’. The boys and Ali have learnt a lot about his hatred for ‘Brexit loving Tory cunts’ in the past month! Initially funny, then a little tiresome, I took this phase for just that; a phase. Nige had had his head opened and his brain manipulated. He’d gone into the theatre with the most fantastic attitude and stayed chatting to his team for the majority of the six hours it took to remove the tumour. Now if that isn’t a reason for profanities I don’t know what is… Shit, I half expected him to be speaking only German, foul is, at least, a language I understand.
“My mind is just completely open. A gaping skull. I see & think about everything, not just the now but the whole future.”
“So when we talk to you about ‘next steps’ you can’t grasp that concept?”
“No, I see it all in it’s entirety.”
After just three days – three days! – in hospital, I took a very relieved husband back home to his family. Harrison and Ali had cooked a special chicken dish for his home-coming and we sat together to eat. That was on Monday the 10th of October. We eat together most of the time these days. We play more board games, have more conversations and know each other far better than before.
So in conclusion to this part of our journey, I can only say Nigel’s strength, his optimism and his energy have completely overwhelmed me. Only in the darkest hours of night do I allow myself to think of a grim future without him, the tears soak the pillow and my heart breaks. But when morning comes again, and he’s there by my side with a coffee in hand and his full itinerary for the day ahead, the future’s bright. Every fucking day I marvel at his recovery. I am left in complete wonder at how his thoughts are knitting back together, how he just manages to make every day one of purpose is beyond me. But he does it, he does it with bells on, that beautiful man of mine.
I have been seduced by the sheer loveliness of Macmillan. The day we left Southmead with the crushing confirmation of Nigel’s condition was certainly one we’d sooner forget. We saw, that day, the little light we’d kept our eye fixed on cruelly snuffed out, yet just one hour after getting home, a phone call provided the strike that lit a tiny flame of relief.
A kind voice told me warmly that he was phoning from Macmillan and that Lois Baldry had fast-tracked forms for us. All he needed, he said, was Nigel’s National Insurance number. Just like that. Just days later another softly spoken gent rang me for our account details – I realise how peculiar all this sounds, fraudulent even but honestly, security questions were asked! Money was paid into our fast-dwindling account pronto. And I, we, felt overwhelmingly supported and loved.
It didn’t end there, although I expected it to. Through the post I received confirmation of our PIP claim with a covering letter from Macmillan explaining why we were entitled to this help. They also sent information on a ‘new style ESA’ benefit that we’re, entitled to, with a number to call and what can only be called a script to follow when speaking to the ‘telephony operator’. It took two attempts but I did get exactly what I needed.
‘Yes, Macmillan said you’d say that but, apparently, in our case you’re wrong…’
We also paid a visit to the Bath Citizens Advice Bureau. Thanks to Macmillan I already knew that we wouldn’t qualify for anything means tested so I didn’t bother taking a ton of paperwork with us. I did, however, take the ‘new style ESA’ form together with the details of the PIP thing we were getting. A lovely chap on reception told us we would be in room 1 and gave us a card with the number 1 on it… There was no one else in reception. At 10.30, on the dot, we were met by Steve who took us, not to room 1 (the reception guy rather awkwardly took our card) but, down some steps to another room – the Macmillan room. Yep, we had our own Macmillan Citizens Advice dude!
The help we received in just one hour was so positive. Steve even filled the form out for me, as he was fascinated by the new layout. In between giving us monetary advice, he talked about his own cancer experience.
‘I treated it like a big adventure!’
On describing his radiotherapy treatment, he explained to Nige how tired he’d feel – ‘Not straight a way but it will catch up with you so rest after your first treatment.’ I think that made a lot of difference to Nige. To talk to a guy, similar in age, about what he was about to go through was a big thing. An important thing. A thing so great, we decided to go for breakfast once we’d said our farewells, all smiles and hand-holding.
So, already I have reason to love Macmillan and what they do. The fact that on that crappy Wednesday a Macmillan volunteer decided to ring me and shine a light into our grim world with his practical problem-solving voice. I know it won’t burn forever but it does signify hope, doesn’t it? And anyway, it’s not necessarily how long a light burns for but how brightly… Right?
Our next step, after these few days of inactivity, is to prepare for and start the radiotherapy. Nige will also be having oral chemotherapy so I’m expecting, well, I’m not sure really. They give you a whole list of things to expect but, honestly, it’s a bit shit. A ‘shit list’. And I’m hoping for more of a ‘little bit unpleasant list’ and will settle for nothing else.
It’s beginning to look a lot like Christmas! Well, it does in our house… I blame the manifestation of twinkly lights and all things festive on the absence of outdoor influences. Usually we’re rushing around with work and moaning about the traffic in town that comes with the Christmas Market and influx of tourists. But due to Nigel’s condition, we are housebound! The need to brighten the days is tangible and what better way than with well placed lights and tinsel.
When last we spoke, radiotherapy was due to start alongside oral chemotherapy. This kicked off with an appointment with a delightful pharmacist, who tied herself in knots trying to explain the timings and dosages of the various medications. It went a little like this;
“So this is the Temozolomide. It comes in two sizes, 140mg and 5mg. Each day you’ll need to take one 140mg and two 5mg, totalling 150mg. They need to be taken one to three hours before your radiotherapy and two hours after food or one hour before.” I take two larges boxes filled with individually wrapped capsules. “Now many people feel nauseous when they first take Temozolomide so there’s these; Ondansetron.” Two more boxes… “You need to take one of these thirty to sixty minutes before the Temozolomide. After six or seven days you may be fine to stop them. I’ll give you these, Metoclopramide Hydrochloride. You can take one, three times a day if you do feel nauseous once you’ve come off of the Ondansetron.” A small, white tub is produced from the bottomless bag, “In this tub we have the antibiotics, Co Trimoxazole. You need one, twice a day on Monday, Wednesday and Friday…”
“We do continue with the steroids don’t we?”
“Oh. I’ll check that.”
“It says on the prescription ‘ongoing’ so…”
“Then yes, continue with those. After food.” Nige looked at me, panic on his face, and asked, “Have you got all that?” Believe it or not, I completely followed everything the pharmacist said, “Yep. I just need to get it down in my diary, down to the minute!”
We left with a huge carrier bag full of six weeks worth of medication, eager to start and so to end this part of the journey.
From our first appointment, on Monday the 14th of November, the camaraderie of the ‘Radiotherapy Waiting Room’ was truly enlightening. Filled mainly with men undergoing treatment for prostate cancer, their wives sat stoically, nattering about the small stuff and listening intently to each other’s tales of traffic madness, unruly grand children and favourite dishes. I’m cursed with disinterest in such people generally, but by Wednesday I caught on to the point of the pointless banter and by Friday I was chatting shit with the best of them.
We have now finished our third week: half way through. Here follows a brief rundown of what we’ve noticed so far:
- Nigel’s head is bigger. Seriously, he looks like he’s storing nuts for Winter…
- He’s lost the ability to taste certain – most – foods. We’ve spoken to the dietician about this and have plenty of tips.
- His skin is a little spotty.
- Tiredness. Like, really tired! Not all the time and not necessarily at night. He generally has a sleep when we get back from the hospital, mid-morning.
- His sex drive has returned – yay!
So it’s not all doom and gloom ;^)
We’ve just celebrated Nigel’s 54th birthday. The boys really pushed the boat out on this one, knowing that I had to keep my budget low I shouldn’t wonder. Mum opted for a cash gift which will buy an expansion set for one of our favourite boardgames, Tokaido, in the near future. My gift arrived looking like someone had bled all over the packaging – a lot. We all decided it must be red paint and quickly moved on! So what have we been up to since Christmas Eve then?
Christmas was wonderful. Lots of games played, food shared and fun had. New Year was a tricky one – it is every year. Gabe went out but Harry and Ali stayed in. We raised a metaphorical glass at the top of the garden (even Nige managed the hike up there) and watched the numerous fireworks from Bathford to Odd Down. In the dark no one can see you cry, which I did, onto my sleeve. It’s all very well saying farewell to a shit year but when the one you’re welcoming in has such uncertainty attached to it, well, there’s no joy in that. Not one bit.
We started the year with optimism. A trip to the cinema to watch Rogue One was a definite boost for Nige, who had an upset stomach and was anxious whether he’d get through it without running to the loo. He did but he was slightly overwhelmed at the digitally reproduced Princess Leia that appeared at the end of the film… Carrie Fisher’s death affected him hugely at the end of 2016.
A week after that we met the very delightful Verena. She’s the masseur I mentioned in My Person Advent. A friend of mine had so kindly bought Nige and I a Holistic Massage each. We had to wait at least a fortnight after the last Chemotherapy session (Christmas Day) as those particular toxins need to stay in Nigel’s system and the massage would expel them. It’s fair to say that on meeting Verena I loved her immediately. A genuinely kind soul who just wanted to give a couple she had never met before some much needed respite, a sort of warm, fuzzy hug with essential oils. As Nige waited in the room next door, I gently poured my heart out to her. Not entirely, I think; I automatically hold back but more than I had to anyone else. The massage was wonderful. Silent tears whilst having all the taut muscles in my back, arms and legs manipulated was extremely cathartic. After an hour we swapped. I smiled as I could hear Nige nattering on throughout his hour.
‘All my male clients do that. Well, apart from my boyfriend…’
Before we left, Verena had booked us in for another the following week – no charge. She even offered to visit us to massage Nigel’s legs when they become cramped. You see, Angels do exist but they’re not ethereal, they’re people, they’re in all of us.
On the 25th we started the 6 month Chemotherapy treatment. We were surprised to realise that it would be oral again. I had assumed we’d be coming in everyday for 5 days of the month to receive it through a drip or something. This was quite a nice revelation though. So 400mg for the next 5 days. Nige still has an upset stomach, loose bowels mainly, no vomit. I do too, I hasten to add but as I’m not doing Chemo, I’m coping marginally better with it!
Well, what a shitty month – literally. We can get through this one in just one paragraph I think. Nige continues to feel poorly – I’m putting it down to the Norovirus which is absolutely rife at the moment. Even Harry complained of a stomach ache. However, his turned out to be Appendicitis… I took him into hospital on a Saturday, at 2pm. He was having an Appendectomy by 6pm. In between I went back home to see how Nige was doing. He’d been sick a couple of times and hadn’t really eaten anything. Back at the hospital for when Harry came out of recovery at about 10pm. My little soldier, putting on such a brave face. The surgery had gone really well, but his appendix was a mess – gangrenous in fact. The infection had started moving around to his back and if we’d left it any longer we would’ve been dealing with peritonitis, which is a whole different ball game… At least there’s a bit of luck on our side. By Monday he was back home, along with Ali. Happy days. Amongst all this was our next trip to Oncology and our next dose of Chemo. We asked about Nigel’s fatigue and stomach bug.
‘The fatigue and breathlessness is a side effect of the radiotherapy.’
‘But we finished that in December!’
‘It can take 3 months for the side effects to be felt so it’s perfectly normal for you to feel this way. With the bug you need to drink plenty and rest…’
I am continually reminding Nige of that last quote…
There, we’re up to speed. Well, almost. I’ll give you March another day. It’s already been up and down so be sure to tune in!
They say ‘what doesn’t kill you, makes you stronger’ and so I guess I’m heading towards Boudicca status! We’ve had an eventful month, the beginning of which was the highlight… After that, well read on and I’ll catch you up.
As I mentioned before, Nige has had a horrible stomach bug which, due to his compromised immune system, he just can’t shift. The weekend of his birthday we had friends over for a ‘Really Nasty Horse Racing Game’ evening. Right up until they arrived I wondered if I should’ve postponed the event, Nige was so not feeling it but to all of our amazement, he was fine. We didn’t keep him up too late (fatigue still has him in its grip) but he smiled a lot and loved chatting to Bex and Liam about their upcoming French adventure. From that night he picked up a bit and a week later he left the house for the first time in weeks. The spring sunshine helped and the fact that he wanted to get his photo for Harry and Ali’s Nature Challenge! He still had an upset stomach but the anti-sickness tablets kept the nausea at bay. The following weekend we visited Nick and popped in to see mum and dad on our way home – that would’ve been unthinkable 10 days earlier due to him needing to go to the loo constantly. He even had a bite to eat at mum’s, which was a massive improvement on the previous week.
With all this improvement I decided to try popping into work for a couple of hours on Tuesday. I’d had a meeting with Sue and saw a few of my class in the playground and thought, yeah, I can do this! So the following Tuesday I braved it and went in. I don’t know what I was worried about, the kids haven’t changed at all (apart from getting taller) and it felt like I’d never been away. Happy days. When I got home, Nige had been a bit sick. He didn’t look great but I still wondered whether it was a little psychosomatic, it being the first time I’d gone back to work in several months. I asked if he was alright with me leaving him for a couple of hours a week and he said it was fine, so I thought I’d try going in again next week and see how he manages. However, things took an unexpected turn.
On the Tuesday I worked, Nige started his 3rd month of chemotherapy. Generally he’d been doing really well but I think it’s a struggle alongside this stomach bug and the fatigue. On Friday, 24th March, I could hear him being sick in the bathroom so I got up and went downstairs to sort out the cat, make a coffee and breakfast, expecting Nige to go back to bed. But he came downstairs to get his Ondansetron and Omeprazole. When I came into the kitchen, he was at the sink with his tablets, running water into a glass. He put the tablets into his mouth, shaking a little as he was cold. As he took his drink I could see the terror in his eyes; the water wouldn’t go in, the tablets were unyielding and as he turned to me, in horror, I watched as his arms shot out straight, his whole body went rigid and he collapsed to the floor, as straight as a ram-rod. He was unresponsive as I knelt beside him, tried to clear his mouth and put him into the recovery position, his breathing was loud and growling and his entire body was rigid and tight. I screamed for help and in moments Harry and Ali were by my side. Ali rang 999, Harry kept talking to Nige and I explained what was going on to the operator, who was wonderful. The ambulance got to us super quick and Gabe let them all in. From there I let them take over. They talked about it being a seizure due to septic shock and never have I been so terrified. In fact I spent the entire day that way as we first raced through town to A & E, then had to endure hours of tests and different doctors offering their opinions. One even asked about Nigel’s thoughts on resuscitation.
“I see you have Multiforme Glioblastoma. I’m really sorry you have to go through that (!) It would be good for you to think about the right to resuscitation.
“I’m sorry what is that?”
“Well, in the event of you needing to be brought back we can resuscitate but most people have a lower quality of life after that so, I know it’s not a very nice subject and it isn’t an issue now but may be in the future…”
However Nige didn’t hear the last sentence as he was processing the initial answer to his question so when the doctor went he wanted to talk about it to me.
“We have to talk about that thing then. That serious thing.”
“No lovely, we really don’t. Right now we need to get you through this. Then, when we’re home and relaxed, then we can discuss that.”
Honestly, I despair with these ‘professionals’ sometimes.
By the time I left at 7pm Nige was on MAU (Medical Assessment Unit) and was looking a little brighter for all the fluids he’d received via IV. Chest and back X-rays were done, CT scan of his head was done, stool samples were required… I left there certain that this was a seizure due to chronic dehydration, I knew that there was no connection to the cancer and I was absolutely positive that with Harry and Gabe, we’d get through this.
And so, because we missed the bus, Ali chatted, I cried, we strolled home together.
When you’re caring for the love of your life and they succumb, not to a related illness but to bloody dehydration, you cannot help but feel a bit useless. Water is such a basic requirement; it’s an absolute essential that we all take for granted in the Western world. It didn’t once occur to me that Nige wasn’t drinking enough – he certainly drank more than me. But once I’d factored in the diarrhoea, increased dose of chemotherapy and his compromised immune system… well yeah, it’s obvious really. So the lesson here folks: DRINK MORE WATER!
Nigel’s stay in hospital had been a positive experience in general. For Nige, there was the constant company. A ward full of men of varying age chatting away the day, the consultant visiting each morning to answer any questions and the wonderful nurses (never the same one twice) with their unerring patience and good humour. For me, once the initial trauma had passed, there was a slowing of time; an opportunity to reflect, to recharge my batteries and to star-fish in bed! I spent everyday on MAU ward with Nige, watching the nurses, in awe as they deftly and sympathetically dealt with our more vulnerable members of society.
*Beep-beep-beep* “DAARLIN’? DAARLIN’?…. DAARLIN’? DAARLIN’?”
“Yes Bob, what can I do for you? I see. Keep your arm straight… There you are. If you bend your arm it will start to beep again.”
*Beep-beep-beep* “NURSE? NURSE?…. NURSE? NURSE?”
“Bob, you need to keep your arm straight. Remember?… There.”
“Am I a trouble maker?”
“No love. You’re absolutely fine.”
These nurses reminded me that when you need to sigh, sigh with a smile. I think my smile had slipped away a while back.
With Nige home we felt revitalised. His appetite was returning slowly and my batteries were on full. To see him eating was a joy and we could see his strength returning. A fortnight later we were walking around Castle Combe Car Boot Sale in the sunshine, something I never thought we’d do again. Although he was shattered in the evening and his right leg had swelled up (quite alarmingly really), he felt great – no pain, just happily tired. Just three days later though, he was back in bed with nausea and the lack of appetite had returned. Back to Dr Brook, in a week.
By the time the appointment arrived things were looking up again. But I wanted to make sure I was on the right path with everything.
“For the diarrhoea we’re taking Immodium. Is that okay?”
“Yep, perfect. I’ll give you a prescription though, on repeat so you don’t have to worry about running out.”
“What about coffee? I’m thinking we should be cutting it out…”
“Absolutely. Also avoid painkillers with caffeine in them – they won’t help in the long run.”
“What about probiotic yogurt type drinks? I’m thinking Yakult or Actimel?”
“Well, I haven’t really thought about that but I think they should balance out the bacteria in the gut so yes, give them a go. I have to say Mrs Lee, you’ve got it all sussed!”
“Yeah, well, I didn’t stop him getting dehydrated did I?!”
Two days after this we were at the doctors for Nigel’s pre-chemo blood test. At the oncology appointment we were both rather subdued. With such an improvement in his health, I was incredibly daunted by the prospect of more chemotherapy causing more trauma. Nige felt the same too. The pharmacist read the situation perfectly and went to talk to Dr Beresford, our Oncologist. On her return she announced that due to Nigel’s low electrolytes (potassium and magnesium levels) they felt it better to skip this month’s treatment; to give Nige another three weeks to get back to full health before his next dose of chemo. We both sighed with a smile.
Meanwhile, back at the ranch, some pretty damn exciting decisions were being made. The first was to update our iMac. The decade old iMac sitting in the office was getting slower and slower – enough is enough, time for a trip to Farpoint (so long as I can get parked). Watching Nige was a delight; he knew exactly what he wanted, what he needed and even haggled over the style of keyboard. So lovely to see him in his element and if anyone deserves a slicker, quicker less frustrating computer, it’s Nige. Anyway, we’ll all benefit from a less sweary and exasperated Nige! Gabe leapt at the chance to set it all up, gifting Nige a rather cool Star Wars screensaver. Now if we can just find a way to get Microsoft Word on there… ahem.
The other decision we made was quite a big bigger. For some years now we’ve been toying with the idea of getting a camper van. To be able to take off whenever the sun decides to shine or when life at home just gets too much has always appealed to us and since we’ve been given this ‘life changing event’ we figured,
‘What are we waiting for?!’
Well, we are waiting no more. Just two days after the Oncology appointment, we purchased a Technoblue, 2002, Volkswagen Caravelle. Although I say ‘we’, she’s in my name so I guess you could say she’s my first car! We’ve named her Wendy.
Nige chose Wendy because of Peter Pan and it worked for me too as I’m Lisa and together we’re Wendy and Lisa… The Revolution? Prince? Yes?? There’s also the much simpler Wendy House analogy so take your pick :p
So we entered May with a new computer and a porthole to new and exciting adventures. Nigel’s health was looking good – yes he’s lost a lot of weight but his appetite was almost back to normal and his energy levels had improved greatly. I chose then to focus a little on myself, deciding to join my neighbour, Michelle on her morning dog walks with Truffle. I set my alarm clock for 7.30am and dug out my walking boots. Let’s do this! Michelle’s a little bit like a super hero, she never changes pace whether going up hills, through woodland or down banks: to be honest I couldn’t have picked a better trainer for our Cotswold Hike! On my first walk we covered just over three miles and I felt epic. I had time for breakfast and a shower before nipping down to the doctors to get Nigel’s blood test done. This one was to check his electrolytes.
After a few hours in bed, at about 2am, I was woken up by Gabe.
“I have this pain in my chest? It’s been there all day and hasn’t got any better. Now I’m a bit scared to go to sleep…”
Gabe has tachycardia which basically means his heart rate is abnormally high, so having chest pains isn’t great. I rang 111 and explained the situation, the operator spoke to Gabe, who was brilliantly calm and very succinct. By 3am there was a paramedic here, checking his vital signs. Although it all seemed okay, the paramedic couldn’t explain the chest pains and so, because of his tachycardia, he took him into A & E. Nige was up and keen to come with me so off we went. Now, it’s a simple thing for most people but for me, so used to making these decisions on my own of late, having Nige by my side was bloody brilliant. However, I couldn’t quite shake my responsibility for his health and so as we entered the hospital I found myself not only anxious for Gabe but also for Nige and the toll this was all taking on him.
After four blood tests (which eliminated a problem with the heart) we were free to go home. We yawned the whole way home and talked about sleeping all day. Aha, bed. As I followed Nige into the bedroom and bent down to take off my shoes, my alarm clock went off…
There’s nothing like a brisk woodland walk to help you reflect on an unexpected event is there?
Since Nigel’s ‘4 Days in MAU’ and Gabriel’s five or so hours at A&E, things have been relatively calm on the health front. Wendy (our VW T4 Caravelle) has provided a welcome distraction and given Nige a whole new family to enjoy – The V Dubbers! Things have moved along for me too. I’m starting to see a future. I’m just not sure I want it…
We took Wendy to our first Wilts V-Dub Club meet on the first Sunday in May. It was great, Nige enjoyed showing the other VW owners our van, making sure they all knew she was mine. He said it with pride but I reckon he just wanted to distance himself from the chintz units I’d created! Whatever the reason, I know he’s proud of me; for what I’ve done with Wendy, for stepping out of my comfort zone and attending a club meet with strangers. It may be deeper than that, but we don’t have those conversations.
The chemotherapy started again this month, at the lower dose which is definitely better for him. In fact on the day he took the last dose, we headed off to Odcombe for our first night away in Wendy. We parked up behind The Masons Arms, a 16th Century inn where we also had a table booked for dinner. My nephew, Seb, and his little family met us there for a drink which was unexpected and wonderful, despite the rain! Nige tired quite early on, which is parr for the course, so we spent an hour or so before dinner chilling out on the bed, watching the rain trickle down the back window. Pretty special, that. Dinner was a real revelation; Nige polished off a massive mixed grill… bar the mushrooms. Honestly, I silently sobbed tears of joy as I watched him clear the plate. What’s more, he managed a full English breakfast the next morning! It’s fair to say, things are looking brighter. We went away again the following weekend, though not over night. Wilts V-Dub Club had organised a day out in Weston Super Mare and Nige convinced me that we had to go. The weather was spot on and the turnout was brilliant too. I parked Wendy up on the beach and then my man and I promenaded all over Weston – quite excellent.
At the beginning of June I had my Occupational Therapy meeting in Keynesham. It’s the next step in getting me back into the workplace and one I’ve wanted to take for the past month. However, after a lengthy discussion I’m not sure I am ready. Day to day I’m strong, I’m fierce and I’m in control but when asked to outline my situation, I cried bitterly for a full 20 minutes.
“I’m not usually like this… I guess I don’t want to go back to the beginning of this shitty story…”
After going on like this, intermittently, for almost two hours, we came up with a plan.
“I think three days a week, maximum would be a perfect goal.”
So that’s it. My plan to get me back to work. Other things I learnt:
- I’m weary all the time because I’m hyper vigilant. Obvious really.
- I’m to have six counselling sessions.
- It’s not Occupational Therapy but Occupational Health. Aha, the difference a word makes.
As if he knew of my meeting (he didn’t) Mark messaged me to invite me on a school trip. I leapt at the chance to show him, and the school, that I was keen to get back to some form of normality. So it was: Mark, ten children and me took the coach to Longleat for the day. For that one day I stepped back into my old life and loved it.
On my walk, on the morning of July the 10th, I spoke to Michelle of my fears for today. I reasoned with her as we trudged along the muddy track along the top of Pussell’s Wood that whatever the result, the only thing that will change is the amount of knowledge we hold. I concluded that I was expecting anything from, ‘You have a week to live…’ to ‘Oh my goodness, you’re a bleeding miracle!’ Though obviously I was hoping for something a little nearer to the latter.
A busy morning with the start of construction of the steps in the back garden and the continuation of the floor preparation in the garage. Then, of course, it was Nigel’s oncology appointment to discuss the MRI findings. Oh, I was not looking forward to this.
Parked quickly and easily, arrived promptly and had bloods taken swiftly. All good so far. Then, at just five minutes after our appointed time, we were summoned. Professor Beresford asked after Nige’s wellbeing,
“I’ve been alright overall. I’m getting these strange nervous attacks which have got more often since the MRI thing but other than that… Actually I do have a headache at the minute.”
Nodding, smiling and with four monitors staring at us from his desk, he replied,
“The headaches do corroborate what’s here on the scan I’m afraid…”
My tummy didn’t lurch like that initial diagnosis back in September, but just fell away a bit. My mouth went dry though. Nige just nodded and said,
“I thought so. Well, I thought something was going on.”
When we visited Dr Barua in Southmead (all of us, en masse), we collectively refused to look at the scan results. Instead, each of us choosing to have a different visual manifestation of the tumour that had, uninvited, attached itself to Nigel’s brain. No such luxury this time with the monitors seemingly encompassing the entire room. Eagerly, Prof Beresford sought to explain the scan. He compared it to the one taken just after the operation last October where we could see just a black chasm. The recent one however had a little extra something next to the same hole. The tumour apparently, back for it’s encore. Odd, I never saw it as a white, fluffy cloud. And where were the teeth? It would appear, and I’m paraphrasing a bit here, that the radiotherapy and chemotherapy thus far has proved fucking useless and the bastard tumour is back. The complete cunt.
What next, I hear you cry?
Well, something called PCV chemotherapy. We have a handout offering us a full explanation but the gist is:
There are six courses, each course takes 42 days (6 weeks) and consists of:
A blood test, followed by a trip to the Chemotherapy Day Unit for treatment. This is delivered via a drip, through a cannula. Then we start a 10 day course of procarbazine capsules. Thirty two days off before we begin again. It’s gruelling and a bit of a knock back but, hey, I think we both thought this was what we were getting with the last lot of chemo!
On our return home from this ‘punch in the stomach’ meeting, we were met by Nick, who was levelling the garage floor. I think he could tell by my face that things hadn’t gone to plan.
“It can take years some time to find the right treatment for these things Liz. Hang in there, I mean, so that didn’t work but this might!”
He’s right of course. We always knew that we were facing a full-scale war but we became complacent in the face of his improved health. With everyone commenting on how well Nige looked and how well he’d done, we forgot (briefly) that the problem was still there. As I said earlier, nothing changed except the amount of knowledge we now had. And that’s power.
Whenever Nige went upstairs I cried. Whenever I left the room, I cried. At 8 o’clock I took myself down to the van to apply my long awaited stickers. For a while I stopped crying and started planning. Not anything major, just where the gold stars and the silver stars needed to go…
As I reflected on the day I realised what was bothering me most. It wasn’t the return of the tumour – we half expected that. It wasn’t the thought of 6 months of gruelling chemotherapy – I can support Nige ten-fold with that. It wasn’t even the thought of having to rethink my job situation. No, it was seeing that bloody scan, putting a face to the name (finally) was surprisingly hard. It meant that whenever Nige gets a headache, for all eternity, I’ll see that fucking white cloud buggering up our life. With it’s metaphorical teeth.
Taking on the role of carer to the love of my life hasn’t been easy; to watch him in pain, to see him stumble up the stairs, to hear him falter over familiar words. But because he is the love of my life, I’ve found my capacity to endure has grown larger, wider and deeper. Yes I cry most evenings and okay, I dare say I’ve let myself go a bit too but honestly, I am happier here right now, with Nige, than I could possibly be anywhere else.
Through the following days after being informed of the tumour’s return, Nige became withdrawn and understandably morose. As I thought, having the image of it seared into my head only served as a conduit for tears each time he reached for the Co-Codamol. The optimism, however mis-placed, of the past few months had gone. It’s fair to say ours was not a happy house and so, with the encouragement of Gabe, I decided to book us a long weekend away in Wendy. Nige had mentioned Paignton in Devon and, though not a fan, I busied myself finding a fairly plush campsite with good facilities on site so we didn’t need to walk too far for anything. On the Friday, bookending our shitty week, we set off on our mini road trip to Whitehill Country Park! I love watching Nige when we go away. He’s always been so gregarious and chatty but I guess in the past, social convention held him back (or perhaps it was me). Not anymore though, and I’ve grown very thankful for it. As I sat supping wine, Nige took himself off to the toilets. Not 100 yards past our van and he was nattering to an older couple sat outside their caravan with an ageing Golden Labrador. I put down my book and listened in;
“We’ve got a T4 thing, well I don’t drive, Lisa does. I’ve been banned.”
“For health reasons.”
“Yeah, I’ve got brain cancer. It’s, well, we thought it had gone but it’s back so…”
“Oh I’m sorry about that.”
“Well, that’s life.”
Tears in my wine again but tinged with pride. It was a relief to hear Nige say it. It told me that he knew what was going on this time. Originally, back in September last year, I don’t believe he did. You’d’ve thought that Nigel’s frankness would be off-putting to strangers but hats off to this couple, they chatted away to him for a further ten minutes before he ambled off to the loo. Already he was more vital than he had been at home earlier in the week. We were actually quite active; exploring the campsite, taking the bus into Paignton and strolling around there for hours then on our final day we stopped off in Brixham. I parked so far out and so high up, it was quite arduous both ways! The little harbour town was beautiful in the sunshine and we sat eating lunch gazing at the Golden Hind, listening to Morris Dancers. As we headed for home though, he told me that throughout our trip his headache had barely gone.
Back home. On the Tuesday I took both Gabe and Nige to the doctors for a blood test. Gabe had an X-ray on his wrists last week but also needed a blood test to check for arthritis and Nige had to have one in preparation for his PCV chemotherapy treatment. The next day was an even busier one. First thing in the morning we had a chemotherapy information meeting at the RUH. They gave us a slide show almost, highlighting side effects and what to expect on arrival to the Chemo Day Unit. By this time Nige was tired and struggling to find certain words. A far cry from the chatty guy in Paignton just 4-5 days earlier. After lunch Harry and Gabe had their first driving lessons. Both left slightly anxious, both returned smiling. There, good shit does happen. Then at 3pm it was my penultimate Counselling session. I’m not sure what to say about that other than I think I’ve made progress… The rest of this week I spent worrying about Nige. He started talking in short, monosyllabic sentences, often leaving them hanging with no ending and I noticed his walking had become slower, causing him to lose balance on occasion. I entered the weekend, and my momentous Macmillan Cotswold Hike with a heavier heart than I’d anticipated.
On Saturday, 22nd July, I got up at 5am. I had time to grab a super-strong coffee, bowl of Cornflakes and my previously packed back-pack before meeting Michelle and Paul out the front at 10 to 6. Paul dropped us off at Queens Square and we had plenty of time to find the coach and make our way to the start of the hike in Hillesley with thousands of other wannabe hikers! Marianne, Dominique and their Michelle arrived early too so the five of us started a little earlier than our planned 8am. As much as I’d love to go into details I’ll refrain. This isn’t the place for that, though I promise I will write a review of ‘My Mighty Cotswold Hike’. I will say though, that the rain came down and the mud swallowed our feet and on the occasions where I found myself alone, my thoughts were always with Nige. Surrounded by so much countryside and so little noise, my mind wandered through pathways not explored before. I confronted the fact that he’d been deteriorating in front of me since the tumour had come back. I marvelled at how, for those 2 weeks between MRI and results, he’d been optimistic still and on the one hand I thought,
Then I countered that with,
“It clearly grew rapidly between MRI and getting the results. So no, not psychosomatic.”
Then my heart ached for Nige and I just willed this hike over with. And guess what? In just over eleven hours it was! As Michelle and I marched through Victoria Park to the finish line who did I see first? Yep, he’d made it out of bed and Paul brought him down with him. Amidst applause, I grabbed his hand and walk the final 100 yards with him, over the finish line. Me and my man. And a well deserved glass of Prosecco!
My Personal Advent. Ho, Ho, Ho!
Eccles meowed us awake at 6am, I hobbled downstairs to put him out! Really, you’d think he’d have adjusted to the hour change by now. I noted that there was no need to have done the Advent Calendars last night as no one, other than us, surfaces much before mid-day, then smiled because they looked so festive and cosy.
Radiotherapy at 10.24am. Nige is feeling particularly anxious at the moment. This is largely due to the visit from a ‘friend’ on Tuesday and the unfortunate, unacceptable and cowardly outcome of it all. In short, the debt owed to us by him won’t be paid. Just like that. It’s not an unsubstantial amount either and was quite critical to us being able to manage. This seems to be a theme with Nige, although, up until now, it’s always been his family who believe they can take, take, take. You choose your friends though, so this is a particularly low-blow.
In an effort to perk up his spirits, I took us both over to Asda. Nothing cheers Nige up quite like a jaunt around a supermarket. We dropped Gabe off in town en route. He’d decided to look for a job finally – yay!
“I’ll drop my CV into The Raven, Saracen’s Head and The Salamander because they’re the coolest pubs in Bath.”
He has a very exact criteria for work placement… Asda was pleasant, not at all as packed as I thought it would be, but Nige wasn’t really in the mood so we left with just a couple of tubs of chocolate and some Christmas baubles.
Gabe was home by the time we returned. I asked how he got on,
“I got a job! At The Raven!!”
Jammy sod, isn’t he? He starts on Saturday. Apparently the manager looked at him and said he was exactly what they’re looking for… Nige was delighted. The first time he’s properly smiled all week.
Awoke to a hairy, smelly face purring in my ear! Not sure where the cat was – boom, boom… Aha, ’twas lovely to have Eccles on the bed with us, all cosy and settled. That was until Nige got up for a wee, and then me. Cue the ‘feed me chorus’. As it was 7am I reluctantly followed our noisy tenant downstairs to the kitchen and fed him. With eyes barely open, I stumbled back up to bed to catch a few more zeds. I must have been tired and didn’t wake again until quarter past 9. I panicked that I hadn’t given Nige his Temozolomide (due at 9-9.15am) and so rushed downstairs. I needn’t have worried, he’s more than capable of sorting out his own meds, especially when my diary, with all the timings written down, lives on the coffee table. He even reminded me that his bloods needed doing today. Good job as I hadn’t even thought about that this week.
Again, radiotherapy was at 10.24am. We didn’t even get to the waiting room as the nurse was ready for him as we entered. Excellent. It’s been like that all week actually, very prompt. I walked on round to the waiting room, said good morning to everyone and sat down. One of the blokes there started talking about a new treatment for prostate cancer in the states.
“We don’t get anything over here. We’re left to die, given treatment to control the pain, while they’ve got access to all kinds of cures.”
I thought about THC; legal in many countries but not here. You’re bloody right, I thought, it’s a travesty. The guy he was talking to added,
“They won’t do anything here until there’s been a three year trial. Despite the trials that have been done over there…”
It isn’t right is it? Surely a trial is a trial. I was trying to start my book for Book Group, The Gap in Time, but was too busy eavesdropping. By the time my puffed-face man returned I’d barely read the first page. Off to get his bloods done. As we’re at the halfway mark there were a few more tests needed, sugar levels I think.
Home and time for breakfast and coffee. A migraine had already set in and the coffee wasn’t enough to shift it. Nige was tired and went up for a nap. I tidied the front room, made a doctors appointment and got down the rest of the Christmas decorations. I promised him I’d be done by the time he got up…
Nige slept for hours! Plenty of time for me to do my chores… You’d have thought so, wouldn’t you? I only had the decorating to finish which, in between taking Ali to work and picking her up, was done to an excellent standard. Oh, and I rustled up a beautiful vegetable soup packed with winter vegetables. Harry provided dessert and the wine I’m shortly going to open, was a gift from mum. Good old mum.
Aargh, that cat – thankfully Nige was awake and happy to get up. I think a week of late breakfasts has taken its toll; I could smell the toast before the coffee and I bet there was a bowl of Weetabix before that! I dozed off for an hour or so more, up by 9am and ready to take Gabe into town for half past. He starts his new job today, 9.45 until 6pm. It’s a busy day in Bath too, what with the Christmas Market and the rugby… he’ll be an expert at pulling pints by the time he gets home!
Nige wrote out the shopping list, took his Temozolomide and we both set off for jolly old Morrisons. It was surprisingly empty actually. I hate supermarkets and at Christmas they fill me with dread but today was fun, especially as Harry was waiting at home to help us up the steps with the millions of bags!
During my usual perusal of Facebook, I came across this:
Last night a friend of mine, well more an acquaintance really as I don’t know her too well yet, gifted Nige and I a massage. So unbelievably kind and thoughtful of her and, although initially a bit wary, I happily accepted. Anyway, I checked out the Facebook Page of the masseuse, and found this Kindness Advent Calendar. Now, obviously I’m a few days late so I’ll have to fulfil the first acts out of date order but I will – honest!
I picked an exhilarated, tired but happy Gabe up from the fountain just after 6pm. Harry said he and Ali tried to pop into The Raven earlier but it was so packed, they couldn’t see him! He was all intact though so it couldn’t have been that bad. I just loved seeing him so alive, buzzing with purpose and drive. Never underestimate the power of appreciation. That’s what employment gives you, people, self esteem.
So a positive Saturday all round then, we knew the week had to get better… Oh, and we won the rugby.
Yep, Eccles woke us up, as per usual… and Nige got up first to feed him (and himself) before bringing me up a coffee. I love our familiar morning ritual. Back in September, before we knew what was causing the headaches, disorientation and memory loss, it felt as if our whole world was unravelling and it was the loss of these moments – coffee in bed, watching the birds and squirrels through the window and listening to radio 4 Extra – that truly broke my heart. Now we know what we’re dealing with, and the treatment’s underway, we have our normality back. Sort of. It’s true to say that things are scarier when you don’t know what they are; knowledge is all.
After our gentle start to the day we got ourselves ready for a trip to Nick’s. I wanted to stop off at TK Maxx on the way, to finally break the back of the Christmas present shopping. So enjoyable and not too busy either. More to the point, I got three gifts sorted – result. We got to Quemerford for about half one. I think we underestimate how important just chatting to others actually is. We spent almost three hours talking the talk, drinking the coffee and generally soaking up their positivity – kind of like a petrol station for the soul. I was sorry we had to leave, truth be told.
Home in the dark, before 5! It’s got cold again and as I drove through Winsley, a mist started in. Winter is definitely here. We put the windscreen cover on Alice and noted the fine layer of frost on the steps – thank goodness we have the handrail!
Everyone was in so Nige cracked on with dinner whilst I hunted for the sellotape – HARRY!! I only managed to wrap one gift (I have the attention span of a gnat) before dinner. I suppose I should do the others now but I’m doing this so… And it’s the ‘I’m A Celebrity’ finale.
An evening spent sat side by side, sharing fruit, watching telly and just being us, Mr and Mrs Lee on a Sunday night.
I did think the alarm clock would beat the cat’s meows but nooooo… I got up and made him wait until I’d made my coffee before feeding him. Honestly, he has biscuits in his bowl over night so he’s not starving. I have a theory that he’s actually telling us about his adventures during the night; “Mum, dad, you’ll never guess what I did last night… Mum! Dad! Guess what I did last night? Go on, go on, go on…!!” and so it goes. Me telling him to shut up isn’t doing his self esteem the slightest bit of good is it?
Ali had her induction day at work today. It meant an 8.30 start, 4pm finish and then her normal shift from 4.30 to 7.30 – long day, poor love. Radiotherapy was at 10.24 so after dropping Ali off we went into town. I really wanted to get Harry’s waistcoat but they didn’t have it. I’ll have to do it online. We also had a fruitless wander around TK Maxx (no Lalaloopsy dolls) where Nige had to, surreptitiously, take his Temozolomide. He managed to get paper for the printer on our way back to the car though, and the walk around town in the fresh, arctic air, definitely did him some good.
We got back to the RUH in plenty of time, which meant Nige was seen early. There weren’t too many there today and so I think everyone was being seen ahead of schedule. It truly is Christmas! We were ravenous when we got home – well, I was. Nige was too but he was also tired so, after a small cereal, he tucked himself back up in bed. I tucked into some smoked salmon and poached eggs.
Gabe worked from 1 until 8pm. I dropped him at the fountain and came on home to wrap more presents. Thankfully Marianne knocked on the door before I could get started – phew! She’d been to a quilters crafty thing in Batheaston and bought me a lovely little bird for my tree. More than that, when I asked her about taking part in a charity hike for Macmillan, she readily accepted, saying that her and her sisters were interested already and would be happy to include me – how cool is that! So next July we’ll be doing the Cotswold Way Mighty Hike all for the awesomely splendid Macmillan.
Speaking of Macmillan, I rang them again today. I spoke to Karen Gough who I am now completely in love with as I believe she’ll make everything better… well, everything to do with the job centre and the EMA debacle. I got off the phone feeling quite euphoric, which is novel. I’m not an idiot though, meaning, well, we’ll see.
I picked a shattered Ali up at 7.30, came home, dropped them off, sat down for 5 minutes and then went to pick up Gabe from the fountain. He looked happy and fulfilled, which made me happy and fulfilled. This is the kind of ‘living through your children’ that’s acceptable, unlike the ‘force them on a stage to dance, dance, dance into a hateful career that I never had’ kind.
A busy day then, with spells of rest for us both. It’s not everyone’s cup of tea but I think we’re coping admirably. I do hope these snippets of our daily life go some way to relieve the concerns of our nearest and dearest. I am so blessed with the friends, family and strangers who have actively, purposely placed themselves beside me and mine to enable us all to stand upright. Let’s face it, no one wants to be dragging themselves into an uncertain future. Stand tall, at least then we can see where the fuck we’re going!
We sat up watching ‘The Walking Dead’ last night so even I was shattered this morning. I’m of the opinion that Eccles does nothing with his nights; no clandestine meetings with felines of the opposite sex, no rumbles in the jungle with badgers or squirrels, no stealing into other houses along the road to look for goodies… He just waits until the house comes awake (usually Nige staggering to the loo) at about 5.30 and remembers he’s hungry. Then it’s a full on assault on us all!
ME-OW, ME-OW, ME-OW, ME-OW *scratch, scratch, scratch* ME-OW, ME-OW, ME-OW, ME-OW
Radiotherapy at 9.54am. I felt much more awake as soon as I stepped out of the front door. Good job really, as those steps are steep. Both machines were running on time again, no delays which makes everybody happy. I was chatting to a couple who are there a lot and I’ve spoken to before, but I can’t tell you what their names are. Anyway, they live in Batheaston but had lived for, like, ever, in Bathampton. She used to work in the village Post Office too… Small world, eh? We nattered on about Clevedon Baths and the Smarts who used to be our landlords when we lived in Batheaston – marvellous. I still don’t know their names though. And they never asked me mine…
On our way out, a guy was having a go at a lady in her unnecessarily huge car. She was just sat, parked, if you will, on the car park exit! So no one could go round her to leave, they just had to sit and wait for whatever she was waiting for… Having her mobile up against her ear constantly didn’t help her cause either. The guy in the car behind got out and went to her window to ask her, quite rationally, to move, pointing out that she was blocking the exit. No deal: she completely blanked him, sat there in her sodding tank. Berating her for being on her phone, he then calmly took his phone out and took a photo. I’m not sure what he wanted the picture for, I think it was to make some kind of point… Not so much ‘road rage’ as ‘road mind-games’ really. Very sedate actually.
Home for breakfast and coffee. Nige took one up to Gabe on his way to bed. It does annoy him that he wants a nap but I welcome it. I think when you read the list of side effects with radiotherapy and oral chemotherapy, tiredness and taste changes are the absolute least of them. I am amazed at how well Nige is dealing with all of this, he’s fast becoming my idol! Whilst he slept, I got a call from Alex at the Job Centre in Bath. He’d been talking about our case with Karen and rang to ensure me that he was dealing with it all now. I felt so relieved, hopefully we’re on our way to getting this bloody New Style EMA shit sorted out! So it was with a spring in my step and light in my heart that I drove Gabe to the fountain. I found a parking space and so took the opportunity to have a little rummage through the charity shop goodies on Pulteney Bridge. The weather was a bit drizzly and I didn’t feel very inspired but I did manage to buy my £1 Secret Santa gift for Book Group next Monday. Another job done then.
This afternoon Nige worked on our Christmas card. He kept it simple and I think it perfectly sums up this year for us. He’s a clever man. That done, he carried on with his hugely complicated board game – see, told you he’s clever. I produced an amazing vegetable soup so, yeah, I’m quite clever too… Ha, ha!
This evening, after his shower, I noticed that Nige’s hair had started it’s evacuation from his head. Par for the course, I know but still, a bit sad, don’t you think? Although it’ll look fine, once I level it all out and it does indicate that the Temozolomide is doing it’s job. Maybe sad isn’t the right word at all. Maybe we should call it progress.
Eccles was beaten by Radio 4 Extra! As soon as he heard Tracy-Ann Oberman as The Attractive Young Rabbi though, he serenaded us all with a chorus of meows… I got up, leaving Nige in bed with a headache. It always worries me when he says he has a headache and I instinctively come back with a barrage of questions like, ‘Is it different to a normal headache?’ ‘Whereabouts?’ and ‘Do you want me call anyone?’ Such is our lot I suppose. Today it was just a ‘light’ headache on the left side and ‘No, I’ll just have some Paracetamol.’ So it was me who fed the cat and made the coffee this morning. Radiotherapy wasn’t until the afternoon today so Nige was able to have breakfast! I made him two slices of toast; one with jam, one with marmalade and left him in bed to chomp away at his leisure.
I got ready for my doctor’s appointment at 9.30, in Bathampton. I drove down with the Standard Life form we need filling in. Dr Brooks was more than happy to oblige though there’s likely to be a £35 charge… (I’m pulling a face right now if you can’t tell). He then asked if everything else was okay. Well, I started to tell him that since this bloke decided he wasn’t paying him anymore, Nige has been experiencing some memory loss, coincidentally the same symptoms he presented with at the beginning of all this. Then, as now, Nige was extremely stressed about this guy. Twat. Anyway, it must have been talking about how it all started that got me so upset. I sat there, sobbing like a baby and unable to speak. I stopped long enough to explain, I blubbed, ‘Sorry, I don’t cry normally!’ He didn’t point at me and laugh at me, he just handed me the tissues. Deep breathe Lise. We talked it through, and he felt that it’s unrelated, just as it was unrelated back then. A bizarre coincidence, maybe, but it’s not helping his peace of mind. I had a very teary drive home, cried a little whilst I cleared away the breakfast things and then saw my brand new kettle… Ahhh, shiny!
Gabe started work at 12 today, so after hoovering the front room and kitchen, I drove him down to the fountain. I was back in plenty of time to give Nige his Temozolomide at 12.30. Radiotherapy was at 1.36pm, are latest appointment time, and we were surprised to see a few of our morning cohorts there too. Apparently one of the machines – LA3 – was being serviced so everyone was on LA2. Despite that, they were only running ten minutes late, which is pretty good I think. Whilst Nige got his treatment I sat listening to a poor old gentleman in the small room next to our waiting room. He’s been in every day this week and each time is so very distressed.
‘My head, my head, my head! Please! Please help! Help, help, help me, I can’t stand it…!’
The staff and his carer did a wonderful job calming him down. It was ‘all hands on deck’ for a moment, the precise moment a sweet couple picked to try and change one of their appointment times…
‘So look, look! They’re changing this one to 10.30…’
‘Oh, that’s fine, we can do that! That’s fine, fine oh! No! I’m singing!!’
I don’t think they noticed that anything was going on at all. Aren’t people wonderful? Truly, this Radiotherapy Department affects each and every one of us in such a myriad of ways, it cannot fail to enrich your life. Nige remembered to ask about his headache. They feel he needs to drink more water. He asked about when he’d have a CT scan next. They’re not sure but think it’ll be January, after he’s rested a bit from the radiotherapy. He also mentioned his hair loss. Apparently it’s the radiotherapy that’s done it, not the chemo… Which makes sense as it’s only on that side of his head.
I picked up milk and tonic water on the way to the fountain to fetch Gabe at 7pm. He didn’t get there until gone quarter past though, I thought I was going to be late for Ali! However, we got there with a minute or so to spare. While we ate our dinner, Ali and I found her sister’s Etsy shop, marshmallowmilk. There’s some stunning pieces of art on there, really beautiful. Good job really, or it could’ve made for some pretty awkward after dinner conversation!
Well, yes, of course the cat learned from his error yesterday and started his meows a good ten minutes before the alarm went off. Bless him… We had an early start so there was no real loss. Temozolomide at 7.30am, out of the door by about 8.20am, yawning all the way. It’s not that early to be fair, it’s just we exist on an awful lot less sleep than we used to!
The drive over to the RUH was hideous. Nose to tail all along Weston Road, onto Weston Lane with massive cars, too big for the road, carrying one small child each to King Edward’s School. None of them could fit in the tiny car park, half could barely get through the gateway! Talk about stressful, seriously, if you start your day like that everyday, you are not enjoying life to its full. Slow down, look around you, smell the roses (or the coffee), just bloody walk. Anyway, I’m not judging, I’m just shocked and a bit saddened that that’s what choice has bought them. At least I’ll know what to expect tomorrow…
Straight in and out today. It was nice to be done early and the traffic wasn’t nearly as bad coming home. I’d anticipated going back to bed once home but I let Nige have it all – because I’m good like that. I watched more trashy Christmas films on TV, ate my breakfast and drank coffee. By the time Nige got up at about 1pm, I was wide awake!
We had to pick up the Standard Life form this afternoon from Pulteney Pharmacy. Whilst in town, we took the opportunity to pop into ‘White Stuff’ in the vague hope of finding the waistcoat Harry wanted – we did! That’s another one done. Good to have the form done too, though I’m not sure why we were charged £35…
As this morning, the drive to the RUH to take Ali to work was awful. So much traffic. We (Ali and I) think it’s the last week of the Christmas Market. That would certainly explain it. I was a little bit late dropping her off but when I fetched her later there didn’t appear to have been a problem. Phew, good job.
That’s all for today… It’s all caught up with me – lack of sleep, lack of Christmas shopping, lack of time to get Christmas shopping… I’m off to bed.
I couldn’t have cared less if Eccles was waking the neighbourhood or snoozing on my feet this morning, I had an awful migraine and my eyes and ears were not winning my attention. Nige took his Temozolomide and then got up to sort out the (apparently) noisy Eccles and find me something for my head – yep, he was popping me with pills for a change! Within half an hour I was up and downing a strong cup of coffee.
Due to the hideous traffic yesterday, I decided to go Widcombe way to the RUH. At least the traffic is controlled by lights and so it does move easily. Yesterday I felt I was taking our lives in my hands, nosing into queues a kazillion miles long… So time-wise; not much in it but stress-wise; much better. Nige looked better going in today and coming out. Not nearly as red or as spotty. I think the swelling has reduced so the mask isn’t quite so tight. We had bloods to do, which opened at 9am – perfect. Whilst he was doing that, I went for a natter with the pharmacist. Nige was concerned about when, exactly, he needed to take the Dexamethasone (steroids) and I wanted to ask about bringing in unused medication. So, we’re all good with what we’re doing with the Dex and yes, they’d be happy to take any unused meds. That’s a job for the weekend then!
Home, breakfast, bed (for Nige), crappy TV for me… I only lasted ten minutes before I impulsively pulled on my coat, grabbed my car-keys and headed out again. Mum rang yesterday and spoke to Nige. In order to swap Christmas presents, a plan has been devised. A plan that means everyone is coming here next Saturday. Initially I had a real wobble. I’m not ready; practically or emotionally actually, and the realisation that Christmas is so close is a little overwhelming. But the alternative is much more hard work… So with that in mind, I decided to visit Debenhams to sort out Anoushka, Seb, Jack, Cam and Ben. BOOM, done! *Sigh* I was back home just after 11am. Man, I’m like a Christmas Ninja! Oh, and to top that, Grace’s present was delivered today too.
Gabe started work at 5pm today. As I type, he is still there, pulling pints and collecting empties. I’m watching whatever’s on TV until 1am, when hopefully he’ll ring and I can pick my tired little man up from the fountain. Nige has just gone to bed, with his beautiful tired eyes virtually closed! I think I can hear Ali and Harry nattering upstairs… Aha, family, treasure them, people, they’re truly the best gift you’ll get this Christmas.
I finally crawled into bed at 2.30am… Gabe messaged me at about 1.15, but he was that lovely stage of drunkenness, you know what I mean, that will always compel me to engage in conversation. Which we did. Over whiskey… Hence the 2.30 bedtime…
Needless to say, Nige was up before me and woke me up with a strong coffee. Oh God, of all the reasons I love him (and there’s many), this is way up there. He never waivers in his devotion to serving me high levels of caffeine in the morning – especially at the weekend. I’m not daft though, he has an ulterior motive: Morrisons shopping! By the time I surfaced, he’d taken his tablets, got dressed and written out the shopping list. All I had to do was pull on some clothes and drive. Done.
The rest of the day was a bit of a blur – well it is now, I’ve just drunk a bottle wine! We had help from Harry and Ali unloading and putting the shopping away. Lunch was followed by a nap by Nige and a naff Christmas film fest by me. When Nige got up he cracked on with a lasagne for dinner, Harry went into town with Sam, followed shortly after by Ali and I wrapped presents. At some point I thought,
‘Hmm, let’s open that bottle of white wine.’
It was as I started on that that Harry rang for a lift back from the fountain. A very good job I hadn’t thought about that bottle an hour earlier…
The lasagne was beautiful. I swear, no one does a white sauce quite like Nige. Last night Gabe was going on about how ‘sad’ his dad seemed. I did tell him that there are many times in the day when we laugh and enjoy ourselves but that he generally sees him when he’s worrying about money, his health and, well, the future of him and Harry… It’s perfectly natural I think. I mean I haven’t stopped worrying about them both since they were born.
‘We need to play more games! It’s been ages, and we’ve got two new card games…’
So, just after 8pm we all gathered together to play Timeline – Inventions. It’s right up my street, not that I’m good at history but I’m interested… I did win, so maybe I do know more than I first thought. We played for over an hour, which was enough for Harry and Ali. Gabe braved Saboteur – a simple, yet brilliant little game where we’re dwarves digging for gold. Again, right up my street!! I’ve missed this; board games with the boys. It signifies normality for me and Nige so really needs to be adhered to.
Right, that’s Saturday done and dusted. Board games definitely distract us both from the shit that is our life at the moment, so look forward to being introduced to more of those this Advent! N’night, hic-cup….
So my morning started with a bit of a scare. When Nige came back to bed with a headache I asked the usual questions… I checked if he’d taken his Temozolomide,
‘No, I don’t take them over the weekend.’
Well, he does, he should but yesterday he didn’t. I felt totally responsible and couldn’t hide the panic from my voice. I left him in bed, rushed downstairs to search through all my paperwork in an attempt to find a telephone number to call. Aha, Chemotherapy Helpline.
‘Please don’t worry Mrs Lee. We’ll pass it on to his team. If his headache gets worse then call me back. Everything will be fine though.’
Tears again. All over my crumpets…
I reheated my coffee – for the second time – and proceeded to procrastinate. I have a book group book to finish, but I’m struggling. There’s a lot in there about losing your soulmate, dealing with the loneliness and moving on… all a bit close to the knuckle at the moment. I’ll persevere though. Ali offered a welcome distraction in the form of old family snaps! She put them on her Facebook page. So beautiful, I love looking at old pictures and I think she’s a little homesick so reminiscing definitely helps. It’s a massive thing, to move away from your family, into one that’s facing an uncertain future. Yet she’s fallen into step with us all, offering each of us a welcome distraction from everything else. Like Gabe said,
‘She just fits right in, doesn’t she?’
I’m quite blessed when it comes to Harry and Gabe’s girlfriends; both Ali and Lois are pretty adorable. That’s why they fit right in!
So other than procrastinate, I did little else. Gabe went to Lo’s but with a twist. Just as he was getting ready he got asked if he could work at 8pm. He said yes. So I got him to Winsley for about 5.30, came back, ate dinner (cooked beautifully by Nige) and then went back for him at 7.30. He got to work in plenty of time, despite the heavy mist that descended upon us, causing me to drive an awful lot slower than usual.
I spent the rest of the evening much like I spent the day; on the sofa, watching TV. I got back from dropping Gabe off just in time to see Claudia and AJ leave Strictly Come Dancing – sad, I loved the two of them. Next up was The Lone Ranger, with Johnny Depp. I know it has it’s haters but I liked it. Once I’d Wiki’d it to find out just what the hell was going on…
No me-owing from Eccles on this, the morning of the beginning of week five in the world of radiology. Yes folks, we are heading into the third trimester… We were late being seen though, so the celebration ended there. Whilst Nige was being zapped, I was chatting to the nurse. She asked about Nige’s headaches and what dose of steroids he’s on. I mentioned the missed Temozolomide and she disappeared to talk to Dr Beresford. I got a few interested looks from the others in the waiting room – celebrity status at last! She returned before Nige was finished with news that his steroids can be doubled. Yay, I did think we should’ve done that a week or so ago.
After breakfast there was no nap for Nige. Nope, he stayed with me the whole day and I loved it. We went over to Leekes in Melksham, where I got mum and dad sorted for Chrimble, then Aldi, for wrapping paper and Sellotape. Honestly, it sounds like so little but to be doing it all with my man was priceless. I drove home through the rain, stopping off at the doctors to pick up my prescription and make an appointment for tomorrow. We got home to the delightful smell of Banana Loaf cooking. Harry and Ali had been busy again… yum! I took Ali to work before it was done though, leaving Harry to take it out of the oven.
Tonight was our Book Group meal. We went to the Green Park Brasserie and sat in the library part. Unfortunately, due to ill health, Marianne couldn’t make it. I almost cried off myself; lack of oomph, things to wear, everything. I didn’t though, I picked up Gabe at 7.15, Ali at 7.30, dropped them off at home at 7.45 and walked into the restaurant at about 8pm. Half an hour late but I made it.
The food was lovely and the company was so wonderful I could’ve wept. They all put together and paid my share of the bill, how about that? You just don’t realise how many people truly care about you, it’s really very enlightening. When the conversation lulled I found myself catching my tears a few times. Missing Nige I think, the Nige of now not the Nige of last year. I miss that Nige most of the time I guess. We all left by 11. I dropped my favourite nurse, Jane, off first and then Rosie. She’s at Combe Down, which is kind of on my way.
Bed now. N’night.
NB As Gabe struggled downstairs at 10.30am, he declared,
‘Bloody cat, woke me up scratching on my door at 7… Didn’t you, Eccles?! Grrr…’
I’m sure Eccles thinks he’s the latest model of alarm clock you know… 6.50 this morning, so I staggered downstairs and put him in the bathroom. Only for a little while, we were up by half past. So, once again, it was the same routine: drugs, dressed, drive. We got there early which meant Nige had his treatment sooner. We were home by 9.15, which gave me plenty of time for a coffee before my doctors appointment just after 10am. Nige came with me so we walked. He needs to walk more and whilst the rain stays away, we can do so without worrying too much about catching colds or whatnot. Dr Standing signed a new sick note for me, for 6 months this time, that’s until June, 2017! Such a long time away from my class, I need to switch off from it all really. There’s nothing to be done, it is what it is and it doesn’t help my equilibrium to keep thinking in circles about letting down my work colleagues, my class by staying away or Nige by visiting to say ‘Hi’ and bringing back a bug to infect him with… And so it goes, round and round. But no more. I think I need to just accept that I cannot be in two places at once – Nige beats work, hands down.
After lunch we were on the move again! DCActiv have invited us both to their Christmas meal on Friday so, with our food choices made, we paid them a visit. I drove this time but only to Bathampton Mill. We walked the rest of the way. Paul and Rob weren’t in but Tom and Steve kept us chatting and made us tea and coffee. Quite an enjoyable hour or so was spent this way.
The rest of the day was pretty chilled; Nige stayed awake again to enjoy it too. Mum rang, and made me cry, made me smile then made me laugh, which is pretty much a mother’s job right? 🙂 She also mentioned that she reads my blog so, hi mum!
After Ali had finished work and dinner had been ate, we all played a game. Harry and Ali worked for days on a ‘Who’s the Famous Person?’ quiz where they’d found 70 pictures of famous people when they were young and Gabe, Nige and I had to guess them. Some of them were really tricky. Of course I won but only because Nige’s memory is damaged and Gabe’s only 21! We finished at about 11 so it was a late viewing of the mid-season finale of The Walking Dead… I think I speak for all fans when I say it was pretty much the finale we wanted.
This morning was almost an exact replica of yesterday, with added tiredness. The ‘getting to oncology early’ plan is still working which meant we were home before 9.30. After breakfast and coffee it was me who took a nap, Nige is still nap-free! I didn’t have long though, only an hour. Whilst I snoozed Nige tidied up downstairs. He still has a slight fixation with that and, of course, with Christmas there’s presents, wrapping paper, tags and all sorts of shit hanging around the front room. He’s not quite as stressed out about it but there are the occasional flashes of the pre-surgery Nige. Not nice! Still, while he’s focussing on that he’s not focussing on the other stuff… Which is nice, so it’s swings and roundabouts I guess.
Having got my fit note (ridiculous Tory name for a sick note) yesterday, I needed to get it up to work. I’d have loved nothing more than to take it myself and see the kids, bubbling over with end-of-term Christmas excitement but unfortunately that’s not all they’re bubbling over with – flu germs and tummy bugs tend to be rive at this time of year and, as you all know, we need an illness-free household. So I dropped it through Gemma’s door and she’s kindly agreed to take it in for me. Another important job done. On our way home we called into Lidl for some stocking fillers. Man, it was packed. Where do all the people come from, I wonder… Students, mums, pensioners? Carers for sick husbands? All sorts really, life just being lived.
The house looks organised now, which was refreshing to come home to and Eccles clearly approves as he stayed curled up on the sofa for most of the day, in his Christmas neckerchief. I’m wondering if he’s poorly you know. All the meowing and begging for food, he can’t be that hungry all the time, surely. We’ll all have to keep an eye on him, give him lots of love and cuddles. A bit like we do with Nige actually.
This evening Norah rang. She couldn’t talk for long, she was heading out to a birthday party, but it was great to hear Nige sounding so much more relaxed talking to her. Like I said, swings and roundabouts.
Aha, Eccles, curled up on the bottom of our bed… Much nicer than putting him out in the bathroom to keep him quiet! I fed him at 7am and returned to bed, for half an hour. Temozolomide at 7.30, then off to Oncology for our 24th treatment. The drive was made sweeter as, before we left, I had an email to say Nige’s EMA had been processed – it’s been paid in! I can’t tell you the relief, knowing that I won’t have to phone the Job Centre again. It’s all thanks to Karen Gough from Macmillan you know, she’s brilliant. All in all, we’ve had some pretty positive stuff happen this week, it’s about time, don’t you think? Before we left the hospital, Nige got some eye drops. His left eye (the side they zap) is continually dry and really irritating him. We tried Optrex but to no avail. Let’s hope this works.
After breakfast and coffee, we set off to Bristol. The saga of Gabriel’s jacket continues: Originally £175 (!), reduced to £88 on the Thursday before Black Friday, only to go up to £125 on Black Friday (grrrr…). Nige, convinced it would go back down, wanted to wait, wait, wait… Oh look, back up to £175! Then yesterday, online, it was back down to £125… Debenhams, you’re playing games with me and I’m not happy! Hence the trip to Bristol. But what do you know? Not a single ‘small’ in stock or online. So I checked, whilst Nige ate a Christmas Turkey Roll.
‘There it is! And they have his size… Ordered. Pick it up from the Bath branch tomorrow.’
We had a lovely day, mooching around the Christmas Market. It was actually quite odd to be in Bristol having not been to a hospital first. But there you go, things move forward, whether you want them to or not.
Quite a lot of driving today, besides the trip to Bristol and back. Oh, and oncology this morning of course.
- 4:10pm Take Ali to work (It took 40 minutes to get home – hideous traffic)
- 5:45pm Take Gabe down to the fountain
- 7:10pm Pick Ali up from work (I left a bit late so was a bit grumpy )
- 9:50pm Pick Harry up from work (Got caught in rugby traffic 😦 )
- 12:15am Pick Gabe up from the fountain
Phew! Still, it’s time alone in the car, to sing loudly and voice my inner most thoughts to no one in particular… And it punctuates my day so there’s that.
Well, would you look at that, we’re at the end of week 5 already! It’s been quite a positive one too, what with my Book Group meal on Monday, Nige’s benefit getting sorted, his pension claim moving forward, the worry of Brent being passed back to, well, Brent and a meal out tonight with a couple of true friends of his. Phew, that was a mouthful. See, I said it’d been a good week.
Radiotherapy at 8.48am, as usual. We got in and out early, as usual, and had the blood test done. As usual. The wives in the waiting room asked about our trip to Bristol yesterday. That led to them asking the age of our kids. When I told them they’re 21 and 23 they went a bit quiet.
‘You don’t look old enough to have kids that old!’
‘Well, I am…’
‘I would’ve put you at your mid to late twenties…’
‘Wow, no, I’m 47! Thanks though.’
Nice right? Although I don’t know what they must think of Nige, married to a twenty-something… Lucky bastard I expect!
Home for coffee and breakfast. Then I had an email to say our package had arrived at Debenhams. So after lunch Nige and I strolled into town to pick it up. We didn’t loiter for long, knowing that we had to walk back we thought we’d save our legs! A good job too as it was most definitely an arduous hike. Nige did equally as well as me – my fitness levels are appalling – and he’s still nap-free.
The afternoon was spent doing very little; Nige is compiling a quiz for Christmas so he was busy with that. I caught up on a bit of sleep and did the laundry before taking Ali to work. I started getting ready for our DCActiv night out at about 5pm – well, we don’t get out much!
We got to Opa at about 7.45pm, so not late really. Everyone was already there, milling around the bar area, chatting and drinking. Initially slightly overwhelmed, Nige managed conversation brilliantly and Rob helped by immediately greeting us. Actually, they were all extremely good and by the time we sat down to eat, we both felt relaxed. I kept half an ear on Nige’s conversation with Matt, just to make sure he wasn’t getting flustered – he was fine. Which enabled me to natter on with Breda, Paul’s wife. We ended the evening with heartfelt wishes and assurances from both Rob and Paul, along with a hug each! All quite emotional, but then I do tear up at the drop of a hat these days.
Nige went straight to bed when we got home, I made myself a Black Russian and followed him up.
3am!! Seriously Eccles? It’s off to the shower room I’m afraid… I know it sounds mean but he wakes Nige up and then he struggles to go back to sleep. Obviously Eccles has no idea about that or I’m sure he’d whisper. I was up at 7.30 but not before Harry and Ali, which created a problem with their advent calendar. I had to let them choose something from the tin! I fed the birds after I’d sorted out Eccles. It’s quite blissful in the garden at that time, all fresh and new and silent. I drove Harry and Ali down to the bus station for 8.15 for their coach to Sutton (via London); again, beautiful, quiet roads and Bath getting ready for the Christmas rush.
Instead of crawling back into bed once I got home, I decided to write my ‘Advent’ blog for yesterday and then enrolled for the Mighty Cotswold Hike in aid of Macmillan (please click the link to go to donate 🙂 Thanks). Setting up the Just Giving page took a while, I was still doing it when Noush, Seb, Grace, Jack and Ben arrived – and was still in my pyjamas… Ah well, it’s my house, right? Mum and dad got here shortly after, in the middle of me making hot drinks for everyone. It was a lovely morning, Grace seemed so grown up and has lost that attention seeking streak she once had, she just gets better and better. Jack is always wonderful; patience of a saint, that one. And Ben was truly delightful, grabbing handfuls of coloured sweets and throwing them whilst laughing – gorgeous. Seb and Noush looked well and relaxed as did mum and dad. We exchanged gifts, the most important ones being the cake and homemade liqueur from mum, although Noush gave us some homemade fudge and chutney – yum!
Gabe had to be at work for 6pm so we had an early dinner. With him at The Raven, I had an opportunity to wrap up his presents – all of them have arrived and now they’re looking glorious under the tree! So yeah, a lovely Saturday, even if I am sat here, at 1am, waiting for a message from Gabe to go and pick him up…
‘No, no, no, I’m having a lie in!’
I decided, before crawling into bed at 1.30am… I messaged Gabe at 1.15am to see if he’d finished work only to get one back 10 minutes later to say,
‘Eating a kebab with the boss, go to sleep I’ll walk home 🙂 ‘
Obviously I stayed awake until I heard him come in, around 2.30. It’s what I do.
Eccles started at about 7, I held out though and in the end Gabe got up to put him in the shower room. Next to get up was……… Nige! Yep, I’d achieved that elusive lie in, and man it was delicious. Nige brought me up a coffee and we both sat a while watching the magpies tease a squirrel – or was it the other way round?
My feet are absolutely killing me, which is causing my knees to ache too. So I prescribed myself a day of ‘staying off my feet’. Bring on lots of mindless game playing on my phone and Facebook shenanigans, with a healthy dose of JustGiving in between. Really? It’s not like I don’t have books to read. It’s a familiar road I’m on and if I can just get my shit together I can steer myself away from that pit of despair I know I’m heading for. I mean, I did at least make dinner!
So, dear people, tomorrow I should be writing about starting yoga. I should mention how much better I feel for doing it and I definitely need to tell you how many pages of my book I’ve read… If I can do that, I’ll avoid that pit. Strange though, I normally get like this after Christmas but I suppose this has been a far from normal year. Please bear with me, Nige generally ‘kicks me into touch’ but, well like I said, not a normal year.
Lois came round today, which brightened it up and I’m up to £45 on my JustGiving page! Which is here, if anyone fancies making a contribution…
So, I’m now going to finish the Sloe Gin mum made and then hobble upstairs to my man, who’s snoring away as I type.
I spent last night in Calne at my childhood home with my mum. I’m sure there must have been someone (anyone) else there but I have no recollection who. I can’t really remember my mum! Nige spent last night in our little flat above the chip shop in Batheaston alone. We set of to Bath in dad’s car and arrived at the Francis Hotel, where we met up with Nige and the Bath guests. I think the Nottingham lot (all 4 of them) were there too. My family came up with us. My enduring memory is of my beautiful brother, Ben, forgetting his suit trousers and having to wear a pair of Moleskin ones of my dad’s. The wedding took place in the registry office on Charlotte Street. A tape recording of something suitable played me down the ‘aisle’ and I caught a fit of the giggles as I echoed my vows. Somewhere amongst that Katharine, Nigel’s niece, dropped a bag of coins that her mum had given her to play with.
Ceremony over, we all adjourned to Queens Square for photos. I say photos, Mavis and her husband, John, had their little camera, as did a few others so they all got snapping away. Next: The George at Bathampton (Coincidence, eh?) for the reception. We were upstairs, in a quirky little room, level with the canal path. A lovely little buffet, with a wedding cake made by mum and coming in at a handsome £70, all in.
It was all truly wonderful and I would not have changed anything. The subsequent 23 years and 9 months have been bloody marvellous too. But the past 3 months? Well, they’ve been insightful, incredible, terrifying, emotional, heart-wrenching, life-affirming… crappy, shit… Still truly wonderful, even if I wish (oh I wish) I could change them, because when you find your soul mate you don’t let them go. You cherish them and nurture the relationship. You meet every obstacle with a ‘can do’ attitude and you fight. You fight.
Happy 24th anniversary, you beautiful man. Always and forever xxxxxxx
The beginning of week 6, the final countdown. There was a real buzz in Oncology this morning. I’m putting it down to the spirit of Christmas, of course, although the fact we’re all on our last week may have something to do with it!
Home and a smashing cup of coffee. Then I booked us a table at Graze for an anniversary lunch. Gabe starts work at 12 so I made the booking for half past, dropped Gabe at the fountain and then went to find a parking space. Well, could I park? Oh my goodness, we drove around and around. Finally we ended up on the very top of Avon Street Car Park, queued to pay, rushed to get to Graze (15 minutes late) and sat down, out of breathe and knackered! We ate our splendid lunch and left in plenty of time to fetch the car and pick up Harry and Ali from the bus station. Unfortunately though, the sodding lift at the carpark was out of order. Poor Nige, so many steps, so little breathe… We got home and his nap-free run was at an end. Not surprising, I could’ve easily joined him!
Despite spending hours on a coach, Ali still went to work, bless her. Harry, Sam and Aaron are picking her up later as they’re all off to The Hope and Anchor. Gabe’s off out straight from work too so with that one trip to Medical Records, I’m done. Gin and tonic for me.
Oh, yoga! I have started. I’ve gone right back to the beginning though, with a basic 12 day programme. Day 1 done, BOOM! Proud? Yeah, you are… x
Despite it being a later appointment, it was a bloody early start. 6am to be precise… Not even Eccles had uttered a word. Because we weren’t in until 10.18, the Temozolomide needed taking at 9, so Nige wanted breakfast at 7, or just before. Otherwise he’d have to wait until 11, hence my early, rude awakening. I kept the cat happy with Dreamies and Nige happy with a couple of Weetabix, then back to bed until 9.
It was strange being in Oncology at that time. The only familiar face we saw was Rose’s husband and he was on his way out. We got in dead on time and also topped up on Dexamethasone, Paracetamol and eye drops at the pharmacy. We went straight to town afterwards, to sort out bank accounts and stuff. Without going into details, it was; park on Walcot Street 🙂 , Waitrose Cafe 😦 , TSB , Nationwide 😐 , HSBC 🙂 , TSB 🙂 , Lush 🙂 , Clarks 🙂 and then home 🙂 . I find the Emojis a far quicker way of conveying the success or failure of our errands.
We were only really home for a couple of hours – not long at all. Then it was my 10 minute yoga whatsit and off to take Ali to work. Nige came with us as we did the – wait for it – Christmas food shopping on our way home… Oh my goodness. I’ve avoided it for years you know. Of all the chores I’ve taken on, this one has to be the worse. The only positive thing was that, due to Nige’s diligent stamp saving and coupon collecting, our £171 bill actually cost us £50 something! Not too shabby eh?
Nick rang this evening. He’s hoping to come round sometime this week to drop off his presents. I love nattering to him, so straight forward and uncomplicated. We also had a small parcel from Norah, Nigel’s mum. At first I thought it was a collection of cards from his family – hoped it was at any rate. No, it was all from Norah; a card for us with some cash in it, vouchers for the boys and a calendar. Very sweet, I’m sure, but I did wish his sisters had bothered… Sending meaningless sentiments on Facebook messenger does not a sister make…
‘Oh, I fear I’m unravelling…’ So for the sake of you all, I’m off to bed.
NB ‘What about the reading?’ I hear you ask. Well, two chapters read last night. Yes indeedy, perhaps there’s hope for me yet!
Eccles; 6.30. Me; 7 and Nige; 7.30… It’s a pattern of a sort I suppose. Radiotherapy was at 8.48, which is what we’ve been used to and now the schools have finished for Christmas, the traffic is much lighter. Unusually we had to wait for twenty minutes. Apparently LA3 had gone down earlier and was only just back up and running. There was a back log, obviously, to clear, which meant more people in the waiting room. Despite all that and knowing the reason we’re all there, the atmosphere was still as positive as ever. Seriously, there are those on my Facebook page who’d learn a lot by a visit or two to Oncology!
We were home a little later then, but in plenty of time for me to get ready for my coffee with Gem at The Holburne Museum. It was lovely to see her; sat by a purple sculpture of a brain (of course) with a green tea and a smile. I bought a hot chocolate and we exchanged gifts. I had a couple of extra ones, which was truly lovely, from Sue (my head teacher) and from Jayne (my Cedar cohort). All very festive, thank you guys! So Gem and I nattered on about Nige, me, work, life. We laughed, we cried – well Gem cried more than me – and then we wandered around the gift shop. It all felt very normal, although Gem doesn’t usually cry until a couple of bottles of wine have been sunk… We parted with a hug and each others best wishes. Perfect.
As soon as I got home I decided to put up some outdoor lights over the front window. They’re the lanterns from the courtyard and I’d been toying with this for a few days. It took less than half an hour and they look beautiful. I’m so pleased, we were beginning to look a bit lack-lustre up against numbers 5 and 6! Although number 4 still looks like a hovel, with a little pile of black ‘dog poo’ bags next to the dustbin. Yeah, it baffles me too… At some point I fell asleep on the sofa, oh hang on, that would have been about 5.30 because Pointless was on and Nige dozed off next to me for 10 minutes or so. I yawned through a phone call from mum afterwards – that’ll teach me. It was obviously ‘mums night’ as Norah rang Nige too. I love watching his face as he listens, or tries to listen, to what she’s saying. Tonight I listened as he told her exactly how he was feeling, how anxious he felt about what was to happen to him next. Obviously I couldn’t hear her response but the fact that after just a minute or so he asked,
‘What, Gareth? Oh… right…’
told me that the conversation had predictably moved onto Gareth or Millie or Lawrence or ANYONE. Sadly, Nige just accepts this state of affairs, pulling a bored face at me as he tries to process all the unnecessary information she’s giving him. I want to grab the phone and tell her to,
‘Shut up and listen to him!’
After all, she rang him, right? I think I may have to have a chat with her first next time she rings, try to politely explain that her son really needs for her to focus on him when she calls and to make sure she keeps sentences short and relevant.
Everyone finished at different times tonight; Ali at 7.30, Gabe at 9 and Harry at 10. Well, that was the plan. I messaged Gabe at 9 and he replied,
‘I’ll be out at half past :)’
So I headed to the fountain at 20 to 10. I sat and waited and waited, time was ticking by and Harry needed fetching at 10. At 5 to 10 I set off to Morrison’s, keeping an eye out for Gabe en route. Harry was out on time and he tried to ring Gabe – no answer. I retraced the route back to the fountain and there he was, flapping about in the middle of the road! That quirky lad. He’d rung my phone (which I’d left at home) and Nige told him I’d probably gone on to get Harry. What a palaver, eh! Still, all came good in the end and the joy of seeing my new outside lights on our return was, sadly, quite exciting!
Let’s be clear, I write my advent at the end of the day and today I’ve ended it with a bottle of blackberry vodka. So I sit here now with Alan Partridge bopping away to Roachford and Eccles casting me reproachful glances. Everyone else is in bed.
A far more sedate beginning to the day; Eccles was asleep at the bottom of the bed, happy until 7, which is a reasonable time for his breakfast! Nige took his Temozolomide at half past and we left for Oncology at 10 past 8. All pretty standard. He really is counting down the hours now – last appointment tomorrow. He asked (again) about what happens next. I’m not sure what they say correlates with what he tells me, though I do know we have an appointment to discuss chemotherapy on 25th of January. Nigel’s confusion is that he thought we’d be starting chemotherapy on the 25th, not talking about it. We checked his medications; even with the prescription the other day, we only have enough steroids to take us to January the 9th. I can’t help but think they’re trying to tell us something… I’m also thinking blackberry vodka isn’t my friend…
Today we tackled the bathrooms – Nigel downstairs, me up. Although mine was the grubbiest, Nige did have the shower to do. He also managed to break the toilet cistern… Cue unnecessary anger! Bless him, it could’ve been anyone. Anyway, after an hour sat, calming down he fixed it, easy as pie. The rest of the house is okay really, a bit of tidying up is all it needs and that can be done tomorrow, after his final radiotherapy session.
It was Harry’s last shift before Christmas this evening. Although given that he’s in next Wednesday, that’s no real news I guess. But with Gabe now done too, it means I’ve only got Ali going to work tomorrow and then I’m done driving for a bit. Wonderful. Once he was home, I opened the aforementioned blackberry vodka, homemade by my mum.
‘This is better than last year’s! Not too strong either…’
Well, yes, it is and actually, it’s stronger than I thought too. So I’m signing off, with emotions piqued and hot flushes abound. G’night you lovely lot, until tomorrow.
Our final trip to Oncology and Nigel’s final radiotherapy session… Well that was the fastest 6 weeks ever! A later appointment meant we had a half hour lie in although Eccles tried his damnedest to put pay to that. He was so good yesterday, curling up and napping at the bottom of our bed. Not today though, it was the shower room for him! Temozolomide taken at 8am, up and dressed, paperwork sorted and out of the door before 9 in the hope that, as usual, an early arrival means an early finish. We were right too, we were done by 9.30. Well, we would have been. I’d given Nige two questions to ask the team;
‘We have an extra dose of Temozolomide (due to a missed dose), should we tag it on the end?’
‘Despite a recent prescription of Dexamethasone, we still only have enough to get us to the 9th of January. Is that right?’
I also brought in the blood form, not realising that it didn’t need doing again until two days before our January appointment. Anyway, it all worked out for the best. The doctor said ‘No’ to tagging the extra chemo dose onto the end and we were given more Dexamethasone with instructions to wean Nige back down to 2mg. They wanted to do a blood test to check his sugar levels but instead (as I had the form on me) they just ticked the relevant box and it can be done along with the rest in January. We just had a bit of a wait for the prescription. I saw Helen in the main waiting room. I used to work with her in Moorlands and we’ve always been quite close. Initially I didn’t know what to say – ‘How are you?’ always seems a bit pointed, given where we were… so I opted with a hearty, ‘Hello!’ She was surprised and happy to see me,
‘It’s so lovely to see you! Why are you here? Is it you?’
‘No, it’s Nige,’ pause, ‘He has brain cancer… How about you?’
‘Oh I have Lymphoma Leukemia. I’ve had it for a few years and have to get regular check ups. Will Nige survive?’
‘Well, we haven’t been told a death date and, well, he’s pretty positive… But it’s stage 4, aggressive, so…’ Tears again.
‘There’s a chap on the canal who was diagnosed with the same thing, stage 4, and he decided not to give in. Started his own canal boat company and is still with us…’
Hope springs eternal, right? A smile, a nod and I’m bouncing out of the room with Nigel and his many meds.
Instead of going straight home, we called into Morrisons. Vegetables to buy as well as a few other bits and bobs. We started with a coffee and a croissant, not quite the celebration Nige deserved but it was passable. You know, Nige and I are compatible in everything except food shopping. Where I grab, push, pay and go, Nige loves to peruse, purchase, pack and ponder. There’s so much joy on his face as he checks the list and he positively frowns when I purposely ‘go off list’ like a naughty child! I’m amazed he’s never slapped me, to be honest!
As we had the shopping to do, I cancelled my coffee morning with Marianne and the girls at Velo Lounge. Rather splendidly, Marianne came to me later. We exchanged Christmas presents and nattered over tea and coffee. She’s having two Christmases, like us as Adam and Jon are all over the place. We didn’t have long as it turned out as I had to take Ali to work for 3pm. I did know, but I’d forgot… She finished at 5 too.
A chilled out evening then, in our (now) tidy house. There’s a few good things on telly, we are all full up from our perfect fry-up, courtesy of Nige and Eccles is silent, nose up his bum, fast asleep! Aha, what an incredibly uplifting 6 weeks. It’s been tiring, emotional and, at times, a little worrying but we got there, along with all the other wonderful couples we met along the way. Now we can kick back our heels, pour a drink and settle into Christmas.
So Christmas Eve then, and we’re up at 6.30, Harry, Ali and I, staggered to the car in the cold and dark to get her to the bus station before 7.30. I’ll miss her you know, but if it were Harry in Sutton, I’d want him home for Christmas day too. I was back in bed by 8 and stayed there until gone 10. Nick rang (which woke me up) to say he was popping over with pressies. Enough time for a quick rush around…
Nick limped into the house, his sciatica’s playing up again. Apart from that though, he looked really well. I made coffee and Irish Barmbrack and we nattered on about 2016; the pros and cons. More cons to be fair. The news last night about Carrie Fisher’s heart attack upset Nige somewhat so the update this morning, telling us she was stable was a huge relief. We’ll have to keep our fingers crossed a little longer, I fear. World put to rights, Nick set off home with presents, hugs and my deepest love and respect for everything he’s done for us this year. He has been a 2016 pro.
I had to pop out to Morrisons again, can you believe it? Brandy butter was calling, along with stir-fry, muffins and a few other bits. I took the opportunity to nip into town too and buy an extra gift for Nige, Harry and Gabe to share… I left it in the boot of the car though, as I definitely could not get it into the house unseen. As we started to settle for the afternoon, I mentioned getting the turkey out of the freezer. Nige said,
‘I don’t remember putting it in the freezer!’
‘I’m sure you did… It’s not in the fridge…’
‘Perhaps it’s in one of the bags in the boot of the car… I’ll check!’
‘NO!! I mean it’s not in there… I’ve been through the bags in the boot…’
We came to the conclusion that the girl on the till put it in a carrier bag but we didn’t notice and so left it there… Great. I deflected another search of the boot by Nige, this time for the receipt, as we set off back to Morrisons to resolve the turkey issue. The girl on the Customers Service desk was brilliant. No quibble, she found out that we had, indeed, left our turkey on the till and told us to go and fetch a replacement, free of charge. Wonderful, what an excellent pair of turkey rustlers we turned out to be!
After dinner I took Gabe over to Winsley, to drop off and pick up presents to Lois. We sat in there for a while, chatting to Stew and Lo and then raced home for Nigel’s games night. We played Saboteur (Harry won), Timeline (Gabe won) and Twelve Days (Harry again). I think we’ll stick to turkeys…
Not an uneventful Christmas eve then, on parr with the last few months I suppose, events wise at least. So what will tomorrow bring? Well, I’m predicting presents, smiles, laughter, tears and love. Bucket loads of love because at the beginning, the middle and the end, it’s all that matters.
Happy Christmas to you all. Thank you for reading, for caring enough to read and for sharing the love that is bountiful within us all. 2017 looks like it’ll be a right bastard from where I am but I bet I can find the love there too… xxxx
Friday, 7th October, 2016
10:30am – I have to say I was a little reluctant to take snapshots of my man before his operation (that old notion of tempting fate and other dark thoughts besides ran through my head) but then he was given these surgical stockings to put on… Yep, I hold my hands up, I barely contained my giggles.
6:00pm – Just 7½ hours after leaving my side, I’m back by his. I was greeted by a, “Hello gorgeous!” well, “‘Ello gawjuss!” to be more precise. It’s truly astonishing, isn’t it, that less than an hour after major brain surgery you can charm your wife and eat a roast dinner?
Sunday, 9th October, 2016
I arrive on Sunday just in time to see Nige moved from the ward, into a private room. Although he is happier, I think happy would be stretching it a bit. He had his bandage removed by a very lovely nurse called Tracey, who was more than a match for his surliness!
Sunday, 16th October, 2016
So, home from hospital on Monday, staples out the following Friday, out enjoying Victoria Park on Sunday. The power of positive thinking and a brisk, October day. We’re winning!
All our love (for now), Nigel and Lisa xxx
It’s bad news I’m afraid.
Optimism fills my bones.
It courses through my veins like a pulsating light of hope that
Only dims when I look into your confused eyes.
A reassuring smile appears.
It forces my mouth into a defiant line of strength and courage that
Quivers with the effort of it all as you return the smile.
We’re here to rule things out.
You see that lift? That’s where you want to be.
But you can’t go through those doors…
You go out here, then left, straight on, round to the right.
Past the ‘staff only’ sign, another left and next right.
You want C8.
I stopped listening at ‘lift’.
I only heard ‘C8’
It’s a quest to complete, then.
More information than I first thought had gone in and
In just five minutes we’re waiting again.
A mere three hours after our arrival,
The similarity with Beetlejuice, it’s myriad of characters nervously await
Their fate in death’s waiting room.
We’re here to rule things out.
Scan done, results pending then sending
Back to where we just came from.
That room filled with stories,
With the trials of souls who just
Want to know more.
What to do next?
How to progress?
Familiar faces still pensive and tense.
Our Ambulatory Care family of a day that feels like a week and then
The doctor calls us in.
All smiles, we enter behind him
And sit down on two mismatched chairs, one blue, one brown to listen
‘It’s bad news I’m afraid.’
But we’re here to rule things out.
A tumour, a swelling is what they’ve found.
The headaches, confusion, memory loss,
As my face goes numb, my hands grow heavy,
My throat constricts until I feel I may burst.
‘Well, if that’s what you say,
Then, yeah, can we go?’
What we came to rule out has cruelly been ruled in.
More scans tomorrow, more waiting to see where we go next but
For now we can leave.
Armed with steroids and instructions to follow.
The enormity of it all has evaded you but not me who must now drive us home
Who must now tell our boys.
So I was just trying to think of all the things you’ve missed, but 13 years is such a long time.
I remember thinking, as we sat in the cinema to watch the first Harry Potter film,
‘God, Ben would’ve loved this.’
Then we watched Fellowship of the Ring. Man, you’d have adored those films too. All through our childhood you talked about when a decent Lord of the Rings film would be made, how special effects couldn’t handle such fantastical imagery. But it did. The year you died, you silly sod.
You missed the whole ‘twin towers’ thing too. I’m not sorry about that. I feel sure you’d have upheld the conspiracy theorists view with vigour, challenging us all. Never fear Ben, Harry and Gabe did a sterling job in your stead. Not at the time mind you, but in the subsequent years. Actually, Harry is so like you it often makes me ache. He can take any subject and any view of it and argue inexhaustibly until we all pretty much see things the same way. It’s uncanny, really, how he can do that! If he wasn’t so lovely, he could be a politician.
Just like you.
You didn’t see Nick and Shelley get married. To be fair, none of us did but we did see him happy which is something he so richly deserved after losing his house, his dogs. You. He’s been poorly for the last few years, which has been a worry. It’s really knocked his confidence, I think. Things seem to be getting back on track for him now. In fact he’ll be here tomorrow, to build a wall. ‘Here’ is Bathampton. We moved back in 2012. It’s wonderful Ben. I see more of Seb now too, as he and Anoushka adore Bath. I’m secretly hoping they’ll settle nearby in the future.
Well, he doesn’t have much to keep him in Sherborne.
We lost Adelaide you know. Not in that sense but as well as. She was always a headstrong young bean and so I feel this will not surprise you in the slightest. Seb didn’t cope with it at all well. He was sort of in the middle of it all, watching helplessly as things just fell apart. I know this sounds heartbreaking and tragic but he had Anoushka and baby Grace to temper the blows and has emerged a stronger, finer and lovelier man. If that was in any way possible. So as I write this, 13 years on, your boy has a good, strong sense of self, a stunning wife and a gorgeous little family. You’d be so proud. I wish I had news about Adelaide but that’s how it is. Sorry.
Gabe’s buggered off to Guildford. He’s at ACM university, studying music. He’ll go far, that one. In fact we’re relying on him to pay for our old age! No, not really. Though I’m sure he would if he could. I think you’d love my boys, Ben. They’re both elements of us three – the better elements, obviously.
What else. Current affairs? Well, we’re Tory again. But Labour, by the end, was verging on the Tory anyway so… The future is a worry. UKIP seem to be marching ahead, gathering uneducated supporters and filling them with hate. That’s all we need isn’t it, more hatred in the world. Where is the love? Another American high school shooting yesterday. That’s 143 in America alone since after you died. 143 Ben. I think of all those sisters out there, victims of these shootings. So many thoughts, so many tears.
Ahh, time to go. I thought I’d just get these few things out of my head before I open the wine.
Coffee in the morning, loud music whilst I’m tidying, old Jimmy Stewart films, cuddles from my cats,
The hoot of an owl, art that makes me smile, a starry night sky, various hats,
Books all around me, a pot of Earl Grey tea, a cold bed to climb into, mother/son talks,
Doors that go nowhere, the smell of my clean hair, a freshly laundered nightdress, woodland walks,
stretching, singing, dancing, Spring, reading,
Old ladies jewellery, my husband’s arms around me, a ‘real ale’ pub, phone calls from Grace,
The sound of my old albums, Sunday roasts at my mum’s, half terms from uni, Bath at night is ace,
bonfires, Hallowe’en, fairytales, writing, Christmas,
Driving somewhere I don’t know, walking hand in hand through snow, dressing up for pleasure, poking around in old junk shops,
The smell of old and new books, the hoodlum look of rooks, pie and mash lunch, a Nick Cave song that never stops.
I Don’t Like…
Fleas don’t please, lice aren’t nice and I’m not sure why we need stick insects…
A clown makes me frown, and a man in a dressing gown and I’m not too struck on over formed pects…
A glory seeking Tory with an over-privileged story,
A fame seeking wannabe with an under-privileged story,
A second rate musician with a *sob sob* story…
Engaging in small talk whilst sat in the chair
At the place where they expertly colour my hair 🙂
Chick-Lit too makes me feel kinda meh…
That may be unkind,
as I don’t really read ’em.
So I guess I don’t mind
and we probably need ’em.
(Just to make us feel better about our own lives…)
I can’t stand litter, or people who’re bitter and I don’t really get the point of Uggs (sorry Gem…),
Caffeine free coffees, and those flat ‘Penny Toffees’, actually Quality Street in general – I don’t like them…
Can’t stand ignorance,
Not keen on arrogance,
And all that self-importance
Is a complete and utter farce.
Can’t stand racism,
Not keen on creationism,
And you can shove your chauvinism
Right up your arse! *Ahem* (So ladylike…)
©Lisa Lee 2014, 2016
Where I Grew Up…
I spent my early years on a farm, in Walnut Grove, Minnesota, running through the endless meadows, arms outstretched, feeling the warmth of the constant sunshine. I even adored school, such as it was. There were just a handful of us, sitting in a wooden hall, on simple wooden chairs using slates to write on, when we had to write. Most of the day we were outside. I learnt about every flower, plant and animal indigenous to Minnesota. I learnt about the land and what would grow well there. I loved the wild flowers that filled the meadow between the school and my little house on the Prairie, I can still feel the scratchiness of the stems, smell the subtle scents as I ran happily through them.
At home, Ma always cooked a huge dinner and Pa would sit at the head of the table, where he said Grace. At sundown my sisters and I went to bed with a lamp. We’d put on our mop caps and nighties, give each other kisses and, then, Pa would lift me up to the loft, where I slept. I loved it when he did this because the ladder used to shake when I climbed up, causing me a bit of a lurch in my tummy. As I curled up under my patchwork quilt, lovingly made for me by my Grandma, I would dream of adventures. I was always with friends and always happy.
As I grew up, I had to move on. I could feel myself growing away from the farm and it’s inhabitants. It was time to find a bit of grit. A bit of real life with all it’s grey areas as well as it’s light. So, at just 17, I sailed to England. I took a job as a servant in a small town in Cornwall. My new employer was a wealthy tin mine owner and the job came with a room in his home. It was nothing like the farm I’d left back in Minnesota. It felt cold, damp and there were pockets of gloom in every room, until Mr Poldark walked in. My teenage hormones turned virtual somersaults and although I had been warned about falling in love with an employer, I couldn’t resist him, nor him, me. If you’d been able to see us then you’d have known we were perfect together, for a while, anyway.
This is, sort of, where I grew up. I was a child, an adolescent and an adult who lived in her head. I would say, and I do believe, that we all do. But in weaving this tale, I have come to realise, that the truth is as strange, if not as romantic as the world in my head. For I grew up here, Calne, a market-town for porky pigs.
I was pushed along in my pushchair to the squeals of pigs being slaughtered and the river Marden running red.
I learnt to walk in the shadow of the monstrous red-bricked abattoir that cast a shadow, no matter what time of day, along the ancient, and beautiful, Church Street.
I met my husband in the uninviting, unattractive and unfriendly Trotters pub.
Then, finally, I moved to King Bladud’s city of Bath.
You know, the guy with the pigs.
©Lisa Lee 2012, 2014, 2016
It’s a shame you never loved me,
It’s not your loss, it’s all mine.
Because most my friends had 3 or 4
Who told them off,
then hugged them tight.
Who made them laugh,
with tales of plight.
And who loved their every flaw.
It’s a shame you were my only one,
Yet I was one of many.
Because I always found out how
When you went away
You took the others,
But never me,
Or my brothers,
And it’s bothering me now.
I have nothing to remind me,
‘Cept a picture I procured.
Because you never really knew me.
Photos that I sent
You never saw,
Were found in a drawer.
And so that’s my family.
It’s a shame you never loved me,
Because I’m worth it, don’t you know.
My First Brush With Danger
Small and peculiar, I was never one to demand centre stage.
Introvert and singular, even I failed to notice me age.
At the troublesome age of fourteen I obviously sought a gaze or two. The clothes became peculiar and singular, while I remained small and introvert. I should have been a worry for all concerned yet no one noticed me at all.
In a small town, as introverted as myself, I carved a non-name for myself. My outgoing confidence betrayed my inward awkwardness. My two large brothers protected my ice maiden cool. But that couldn’t last forever.
Pubs, pubs and more pubs. What else is a girl to do? I smoked and drank like a man, dressed like a wood nymph, froze people out. Until I met the dad of a man who was a friend of a friend. I liked that friend. I thought he was cool.
A drunken night, no words exchanged just gazes. “You confuse me,” said my friend. “You have no idea what you do to men.” Hmm, and I downed my pint and rolled another. Cold and indifferent, I shrugged. The dad of the friend (who I thought was cool), said,
“Your face is exquisite. I would like to photograph you.”
“All right,” said I and got into his car.
We head out of town, this dad and I, the friend (his son) in the back with me.
We pull up to a barn, a converted barn and I’m not as impressed as I should be.
I remember little else, I was pretty drunk I guess, though I do recall the light switch.
It was on the wrong side of the wall and it mattered to me. Much more than what could’ve happened next.
I woke up the next day, in my bed in my house with my mum making breakfast downstairs.
My recollection was vague but I knew I’d been good, my friend had been there the whole time. For months subsequent I asked this chap, “Are the pictures done then, are they okay?” He just smiled and looked kind of sheepish.
Finally I asked and he said, “Lisa, they are the pictures of a quiet beauty taken by a lecherous, drunken old bastard.” He stopped short of adding, “Who, if I hadn’t have been there, would’ve taken full advantage of your own insobriety.”
That friend of mine remained confused about me but I became wiser that night.
For dirty old men are there throughout life but to get into one’s car is not right.
A Moving Story…
As I mull over the last 20 years, looking at the walls that have protected my entire reason for living and recalling the woodchip wallpaper that adorned each one, I find myself without any real affection for the house that became our home all those years ago. I do not find this in the least bit strange, however other people seem to.
For all of those well meaning souls out there, here I sit, laptop in lap.
Newly married and 7 months pregnant, I fell in love with a house. We had looked at so many around the Southdown area of Bath, each time we came away feeling totally depressed. So we widened our viewing area and looked at a cottage in Peasdown St John. Well, it was perfect. There was a long, rambling garden that I could imagine my children exploring in, the cottage oozed quirkiness. It completely grabbed me and so we put in an offer. To our delight, it was accepted. I don’t remember the ins and outs but, basically, it was ‘devalued’ by the bank. This meant that either the seller had to reduce their price or we’d have to come up with 3 grand extra as a deposit. It couldn’t be done and so we let it go. I’m telling you this so that you understand that this house was never the ‘love of my life’. It was a quick purchase as I was about to give birth and as such, we’ve been extremely lucky. But, from the beginning, my soul has never really been here. It stayed in the little cottage.
“It’s going to be quite emotional leaving here.”
“I think I’ll shed a tear or two. Especially when I pack up my room!”
“Lots of good memories eh, Lise? It’s going to be a bit of a wrench isn’t it?”
No, I think, it isn’t. I have been ready to wrench myself away from here for 11 years now. To find a new place that suits me better, that can accommodate my need for anonymity. Wrench me away, I think.
With a cup of coffee in my hand, I gaze out of the kitchen window and a smile forms as I watch the chickens amongst the poppies and dandelions. They’re a fairly recent addition to the family and very welcome too. As my mind drifts, the image drifts too, into shadows of Harry and Gabe, toddling on the uneven lawn, kicking a ball or riding a tricycle. Then I can see a young Nige, dressed as a pirate, surrounded by a dozen kids. They’re all laughing fit to burst as he throws himself from one imaginary treasure island to another. We did throw some magnificent birthday parties for our boys. They are all etched into my memory like veins of gold, ready to travel with me wherever I go.
As I dwell on these birthdays and celebrations I cannot help but recall the down side to it all too. “Lots of good memories eh, Lise?” Yes, I think, but many more not so.
I had longed to be a mum and had high expectations of myself. I believed I would be Mother Earth, surrounded with babies and cats and permanently smiling. I would bake too. Soft, perfect sponge cakes that everyone would love. After a traumatic delivery (emergency caesarean after a 26 hour labour) I remember sitting in hospital thinking, I am never doing that again! But I knew I was going to. Harry was not going to be an only child and besides, I was going to be Mother Earth.
They used to call it the ‘Baby Blues’. It wasn’t blue, though, it was a sort of messy grey. That was how I saw the world for, what, years. Words like loneliness, isolation, boredom and desperation floated around my head. I rocked back and forth for hours at a time, sometimes to get Harry to sleep, others to break the monotony of the day. Nige would get home and take over for me while I slept. To say that I let myself go is an understatement. To say that this house felt like my prison is not.
Then, just over a year after Harry was born, I fell pregnant again.
By the time Gabe was born I did at least have a network of friends. I visited other people’s houses for coffee and even went out to the park occasionally for the day. With this new-founded support I even passed my driving test. Suddenly I could leave not just the house, but the area! It was brilliant! Although I still fell in and out of depression, I felt as if I had a handle on it. Watching my boys together, playing, arguing, just being, was the best therapy. The house was coming together too. So, that was my few years of relative tranquillity and feeling like a normal person then. They were pretty happy times but, again, I carry them with me. Those memories of car journeys and days out with friends are not triggered by the house but by the people. I never wanted to be confined to the house again!
“I think I’ll shed a tear or two. Especially when I pack up my room!”
We still have the same bed both boys were conceived in, both boys have been nursed in, comforted in and the same bed I was confined to when Gabe was about 3.
Coming up to Christmas I’d been battling with flu symptoms, upset tummy, everything it seemed. Nige had arranged for us to go on The Santa Express, in Minehead, where the boys would get to meet Santa after a short journey on a steam train. It promised to be a truly magical evening. I felt awful though. The car journey was horrific, it was bitingly cold outside when we got there and the complimentary sherry was like paint stripper. It was all a bit lame as I recall. On the way home I remember looking at the many lit up homes and thinking, why bother doing any of that? I think I was delirious but at hat point I had no idea how seriously ill I was. In fact, I spent Christmas laid out on the sofa during the day and sweating at night. I had vivid hallucinations too where a glass roof would open above me, revealing a sort of guru who talked me through my pain. Beneath me was cracked, baked earth getting hotter and hotter. On New Years Eve I decided enough was enough. I went down to Boots. I stood at the pharmacy and said, “I’m not sure what’s wrong with me but I now have this,” lifted up my shirt to reveal a large red rash. The staff collectively took a step back, one saying, “You need to get yourself to A & E.” So that’s where I went.
I left Bath RUH shortly afterwards, diagnosed with Scarlet Fever. I then spent weeks in bed, on severe antibiotics. Over the next 2 years I lost all of my skin, underwent reflexology to get my internal organs working properly again and scared the shit out of my mum.
“It’s going to be quite emotional leaving here.”
That I cannot deny. Emotions are everywhere and seep into you when you least expect it. Positive, negative, you get them all! So, yes, of course I’ll be emotional. I don’t know yet if that will take the form of a jump and a punch into the air or a cascade of tears. I’m betting it’ll be something in between.
I have only once shed a cascade of tears in this house (or any other) and that was about 11 years ago.
To spend a day gardening with the family, laughing and smiling in the sunshine is a wonderful thing. That is what we’d done and by 10 o’clock we were curled up on the sofa, about to watch a gripping thriller (Messiah, with Ken Stott). The phone rang. The news was brief. My world fell apart.
All the wonderful memories of this house come from my boys. Watching them build their brotherhood bonds has been the most magical part of their childhood and my motherhood. Those memories can hide the previous ones of depression adequately and give strength to cope with anything. Anything, that is, except the loss of my brother. That cannot be hidden.
That is when I first wanted to move. To wrench myself away from the solid manifestation of my grief seemed to be the best way forward, the only way. I am glad I didn’t though, I’m glad we waited. Though often awful beyond compare, the last 11 years have seen me change quite dramatically. I can now deal with all my quirks and oddness, embrace them and turn them into positive energy. This is what I’m taking to our new home, along with inner tranquillity and an abundance of laughter.
©Lisa Lee 2012, 2016
Happy Bloody Easter!
Saturday, 31st March
They are sat together, pondering the evening ahead, when she says,
“I know. Let’s watch ‘Attack the Block’! Yeah?”
“Yeah, alright,” he replies. It takes her a while to, first, find the film and, then, put it on the nearly defunct DVD player. This was largely due to the Earth Hour, when every light in the house was off in a bid to save the planet. She could’ve waited five minutes, until 8.30, when the lights would be back on, but in a life lacking adventure, this was extreme.
“We’ve still got to watch all the trailers I’m afraid. Bloody thing won’t skip, pause or allow me to scroll.”
“Never mind. It makes a change to watch trailers.” She wasn’t listening.
“Let’s have popcorn! I’ve got some kernels in the cupboard.” So, in the kitchen, in the dark, she roots around the cupboards for the kernels, a large bowl and the novelty duck popcorn maker. Quest achieved, she goes back into the living room, sets it all up and settles down to the film. “Gabe saw this at the cinema, I think.”
“Mmm. When does he want picking up?”
“Well, he said 11.30 but I’ll check.” She picks up her phone, sends a text and then discards it again in favour of the film.
At 10.45 she sends another text.
Do you still want picking up at 11.30? Dad needs to know, as he’ll have to leave in a minute.
No reply. “I’ll try ringing.” No answer. She redials almost immediately. There’s still no answer. “Come on Gabe, for fucks sake! I hate this,” she moans to him. He says nothing, sighs a bit but doesn’t really stop watching the film.
“Ah!” She grabs her phone,
Hi mum. Sorry I forgot to say, I’ll be staying at Dec’s tonight.
She reads it out loud and then says, “That’s not right is it?”
“ ‘Hi mum’? When did he get so considerate?” He laughs. “No really!” She re-reads it and types one back,
Okay. Be good xxx
“That was quick!” Too quick, she thinks, and unnecessary. She reads it,
I will x
“A kiss? Since when does Gabe sign off with a kiss?”
“For God’s sake, relax! You want him to text and he has.”
“I know but it doesn’t feel like him. What if someone’s nicked his phone, or he’s had an accident or, well, anything!” By now the film’s finished, Harry’s gone out and they’re putting the cats out for the night.
“You’re stressing over nothing. He’s stayed at Dec’s before. He’ll be fine.” He sets the computer up, “The Walking Dead?” he says.
“Hmm? Yeah, cool. Is that the zombie thing?” She climbs into bed.
“Perhaps he’s drunk and a mate’s sent the messages for him.”
“A girl, obviously.”
“Why a girl?”
“Who else would start, ‘Hi mum’?”
“True. Relax. Let’s watch zombies!”
Sunday, 1st April
At 6.30, quarter of an hour before the radio alarm goes off, the phone downstairs rings. She leaves it, knowing that she’ll never get there in time. Not without breaking her neck on the stairs anyway. Shortly afterwards, her mobile phone beeps. It’s right by her side, so she opens the message.
Are you up?
“It’s from Gabe!” she says, even though she knows he’s fast asleep.
She is just about to send a reply, when it rings.
“Hey Gabe. You okay?”
“Um, yeah. Can you like, come and get me?”
“Of course. Right now?” her heart pounds a little, anxiety creeps into her head.
“Err, yeah. If that’s alright.”
“No problem. Wait out on the pavement, where Dec was when we dropped you off. I’ll be with you by quarter past.”
“Cheers.” She’s relieved. At least he’s okay. At least that was actually his voice, even if it is stupidly early. She pulls on a dress that’s been lying on the floor for over a week now, finds some shoes and heads out to the car. Before she shuts the door behind her, she calls out, “Put the coffee on then!”
The roads were gloriously clear. She wasn’t panicking as such but she did know that speed was of the essence and so possibly drove a lot faster than she should have.
Half an hour after leaving she’s on the road where Dec’s mum lives. She pulls in, grabs her phone so as she can let Gabe know that she’s there. There’s another message.
Can’t you get here earlier?
“Bloody hell Gabe, I drove hell for leather as it was!” Instead of messaging him back, she rings.
Just moments after that, he appears, sort of limping along the lane, lip swollen, nose bloody and white t shirt covered in his (or someone else’s) blood. His vodka eyes say it all. She says nothing, watches him struggle to get into the passenger seat. He looks at her, those still beautiful eyes betraying a rueful smile that his mouth is struggling to show. “So, what exactly happened here then, Gabe?”
“Apparently I fell down. A lot.” She nods,
“Fell down. Sure?”
“Yeah, that’s what Dec said.” She looks at his face.
“So you weren’t punched?” He looks shocked,
“No! I definitely wasn’t punched.” She looked closer. They were definitely grazes and not punches. With that cleared up, she starts the car and sets off for home. “What were you drinking, vodka?”
“Were you doing anything else?”
“Just drinking. Lots and lots of drinking.” We’ve all been there, she thought.
“Where were you when you fell over then?”
“Well, we wanted to go to the pub but we all got so drunk. We didn’t even get as far as Asda.” She laughs, then asks,
“Was it you who text me last night?”
“Nah. It was Chelsee.” She smiled, knowingly.
“Text your dad. Tell him to run you a bath.” It takes him four attempts but the message is finally sent.
As he makes his way upstairs, his dad throws him an enquiring look.
“Don’t ask,” he replies.
She sighs, “Did you run him a bath?”
“Never mind.” He never reads his bloody messages, she thinks, turning on the taps and pouring in lots of Radox.
“He’s thrown up in the car,” she calls down to him.
While Gabe’s in the bath, she drinks her coffee and relives her morning for her husband. “I honestly thought I was watching The Walking Dead when he shuffled out of the trees!”
Three hours in A & E soon sobered her boy up. Although it was exhausting for them to be sat there too, she felt it was an important lesson for him and, anyway, despite her cleaning it, she could not make his nose look right.
©Lisa Lee 2012, 2016
What She Said, What He Said.
As they climbed into the newly changed bed, the smell of ironed cotton filled her nose.
“I love the smell of fresh sheets!” she said.
“Me too.” He laid out his right arm so she could snuggle up next to him. She did and he held her tightly.
“My hair looks cool doesn’t it?” She looks up into his pool-like eyes.
“Yeah. It’s very red.”
“It’ll be redder next time. Although this time was a happy accident.”
“Well, Karen wasn’t there today so Jen did it. But my usual colour wasn’t there either…”
“What, did Karen take it with her?” he laughed.
“No, of course not! No, but they had the one above it? It’s the same but has an ‘I’ next to it’s number.”
“So,” he asks, ‘what does the ‘I’ stand for?”
“I think it’s ‘intensive’. Or ‘interesting’!” She laughs, sits up and hugs her knees. “It does look lovely though?” He smiles. She loves how he bites his bottom lip when he does so. She loves how his eyes flash as they squint ever so slightly. But mostly she just loves him, bones and all.
Tracing a finger along her nose, she says, “You know I have a fairy nose?” He laughs. “No, really! You see how it’s like a ski slope?”
“Sort of, yeah.” He has to pull his head back to get a better view.
“Fairies from miles around come to my nose for their winter holidays. They don their tiny, weenie skis, stick their cocktail-stick size stick things either side and whoosh!! Off they go! Little bastards.”
“Why are they?”
“Why are they what? Little bastards?”
“Well, if they paid the going rate for a ski holiday, I could get this bloody awful nose put right!”
He kisses her turned-up nose. “I love your nose.”
She closes her eyes, smiles. “Good job then.”
©Lisa Lee 2012, 2016
Ego n a sense of self-esteem
As a child I soared, adored.
Only later, in the eyes of others,
Did I shrink and wither in the shadow
Of my brothers.
Unsure still of my place, face,
Features unseen, a stranger reflected
In the mirrors that adorn walls at home,
A mother of sons loud, proud.
My position more certain, more assured.
I look on in awe as they look to me,
©Lisa Lee 2012, 2016
Fairytale of New York
This is Elsie Ethel Bucknall, the most fabulous woman it has ever been my misfortune to never meet. My mum knew her though, very well, and has always made me aware of the adoration she held for her last grand daughter. Given my rather frosty relationship with my paternal grandma, I clung to this spiritual love and basked in the warm internal feeling it gave me.
Elsie was born at the beginning of the last century, 1904 in fact, the fifth child of seven to Alice and John Bucknall. They were an extraordinary family, the women in particular (which is so often the case), were a magical mix of independence, good humour and quirkiness with each one having a portion of fragility thrown in. Elsie spent her youth bed ridden with a nervous condition that prevented her from placing her feet onto the ground. Like a Princess in a fairy tale, locked in a tower, she could never go out and so was unable to meet her Prince Charming. Never attended the ball. But then, as if a curse had been lifted, she recovered from the supposedly unrecoverable, left her home and walked straight into the arms of her dream man. She was thirty years old.
Charles was a medical journalist serving in the British Army. He and Elsie were very much in love and by 1938, just four years after they were married, they were blessed with three children and an idyllic life in Jamaica. A Princess once again, Elsie wanted for nothing only this time she could take the children on long walks with the family dog whilst the nanny watched the baby. She could dance in her husband’s arms and need only go to bed when she was exhausted after a long day. It wasn’t to last, the war put pay to that. In 1942 Elsie and her family found themselves on one of eight boats bound for America and it was one of only two that made it.
Charles stayed on in America. Elsie was to take the children back home to a house in Hampshire, that he had bought, on her own. They said their farewells at Grand Central Station, as he left her with all her worldly goods and family by her side. She must have looked fairly wretched as an offer for Jill, the eldest child, was made. The lady meant well, I’m sure, and many children on that platform on that day were re-homed, but not Jill. I wonder if she’d known that for the past twenty-four hours she’d been carrying my mother in her belly, would the answer have been the same?
Back in Blighty, things were looking bleak. This marvellous woman who I never met, found herself in a remote bungalow, with no running water and an impossible range that must never go out. She also found out about that small ‘bean’ growing inside her, a wonderful parting gift and constant reminder of her beloved Charles. Never once did she consider how her life had taken this unfortunate turn. She never moaned and she never tired. She got on, making the most out of this cosy home and encouraging the older children to help with the endless chores. She wrote to Charles and he replied, long love letters written in magic green ink that danced off the page and warmed her heart. He came home once, after the birth of the ‘bean’. He named her Judith and spent his leave hugging, cuddling and cooing over his new daughter. Then he was gone.
In 1944, ten years after they’d met, Elsie received the telegram that so many women of that time received. He wasn’t dead, just presumed to be. For Elsie this meant she could never move on, even if she’d wanted to. She waited for him to walk in through the back door. She anticipated his arrival on a special birthday. She never let go of this and so, as if to avoid the inevitable disappointment, she travelled. Right up until my birth Elsie, my gorgeous, wonderful nana flew to Canada to stay with her daughter, Mary, on at least half a dozen occasions. She would stay on the gypsy camp that was my first home, sharing the ramshackle caravan with mum, dad, my two brothers and I, attired in her pristine, hand made suit and under corset. When we moved from there to a much more suitable house in Calne. She came and helped her rebellious daughter, the bean from New York, my mum, to plant bulbs. Then she departed.
I never knew her, you know, yet of all my family I feel I know her the best. One day I shall ask my mum what she was really like, but until then, this has been Elsie Ethel Bucknall, best nana there never was.
Eddie Bray had bought a caravan. It was one of many stupid things he was destined to buy but to Liz and Cathy it was a palace. Whilst the boys in the neighbourhood made dens in the hedgerows, using tires for toilets and grass for floors, they had a super large playhouse with a proper kitchen, c-plan seating and over-head cabinets. Though Cathy’s mum had deemed it ‘uninhabitable’, the girls barely noticed the mould on the cushions, thick grease coating the tiny stove and general musky smell that filled the air. They busied themselves with borrowed scouring pads and Vim, pointlessly scrubbing The Caravan’s surfaces. Cathy gave up, leaving Liz to tackle the stove. She sat on the damp seat cushions, cutting up newspaper into chip shapes.
“Here,” she called to Liz, “Make some cod.”
They sat together, making newspaper fish and chips, chatting like two old fish wives. Newspaper fish wives.
Summer holidays meant that Braemor Road was an ‘open house’. Friends drifted through each other’s doors for the entire six weeks. Liz drifted mainly through Cathy’s and vice versa. Their mums worked together in Harris’ Factory and so they too would drift in and out. Today Liz’s mum and dad were creosoting the fence, taking advantage of ‘The Caravan’s’ appeal and their daughter’s absence from the garden. But they could hear the two friends laughing and singing happily.
“Two cod and chips please.”
Cathy scoops up paper chips and puts them onto a sheet of newspaper. She puts a paper fish on top, “Salt n vinegar on tha’?”
“Um, yes please.” A frantic shake of an imaginary vinegar bottle in one hand and salt pot in the other, Cathy then wrapped them up and handed them to her friend.
Someone was banging The Caravan. The girls rushed to the windows at the back, drew back the curtain and saw Martin, a kid from over the road, muster up some saliva and gob on their beloved caravan!
“Oi!” shouted Cathy.
“What?” he laughed back. “Can’t do nothing!” And this is when it happened. Liz, tiny and sweet, looked straight into his face, which was level with hers as she was kneeling on the seat, and through the open window she shouted,
Everything went quiet, Cathy gasped and put her hand over her mouth, Martin looked shocked and ran away. Liz’s mum called over the fence, “Lisa Barnes, get back round here NOW!”
Creosoting was a God awful job but it had to be done and the weather was on their side. Jude sat with her legs curled under her, doing the lower part whilst Barry did the upper, twice as fast. All was peaceful until, from the other side of the fence, they heard a high-pitched,
Jude stopped brushing, so did Barry. They looked at each other, barely containing the laughter. “Was that Lizzie?!” Barry was incredulous.
“That was definitely her little voice.” They collapsed again. “Stop. Stop! We can’t have her doing that!” Barry nodded, smiling. Between stifled giggles, she shouted,
“Lisa Barnes, get back round here NOW!”
All of Liz’s bravery had evaporated. As her mum’s voice entered her head, something shattered into a thousand pieces. Her precious make-believe world had been invaded, first by Martin and then by her mum. She walked around to her house, dragging her feet and sniffing back tears. She couldn’t have known that at the time she was walking to her house, her mum and dad were fighting back tears of their own, composing themselves to deliver a telling off. She only became privy to that piece of the story twenty years later, over a bottle of wine in her mum’s kitchen. Strangely, though she laughed, she couldn’t help but feel a tinge of pity for the poor little girl, dragging her feet along the back track.
Women Of Substance
I have never really thought of myself as small. I am a massive 5 feet tall and I feel this is about perfect for someone like me. This superb amount of confidence I have with regards to my height I owe to three extraordinary women. And earlier this week, I said farewell to one of them.
Family gatherings, when I was a child, were fairly infrequent and enormous fun. Trips to Stockbridge to visit my Grandma in Over Wallop and my cousins in Grateley and Broughton always felt a little awkward as so much time seemed to have passed between visits, it was difficult to get back to the familiarity we may have gained the previous summer. But at the centre of these get-togethers sat my two gorgeous aunts and my very beautiful mother. I wonder now, how three brothers from a small village in Hampshire managed to meet, let alone marry, Italian, Afro-Indian and Chinese women. But marry they did, with many cousins and myself to thank them for it.
At about 5 foot, my auntie Sue was the tallest. She’s my Chinese aunt and was the coolest adult I knew. We would visit her and uncle Robert (the youngest of the brothers) at their old house in Grateley where she’d feed us the best pork crackling you could ever imagine, after we’d exhausted ourselves swinging across the ‘chestnut pit’ in the garden. Like my mum, she was and is beautiful. Unlike my mum, however, she played the guitar! As a child, the coolness of adults depends very much on the presents they give you for Christmas. You could never get cooler than a hand-made art portfolio, lovingly covered in Laura Ashley wallpaper with ribbons to keep it closed. My brothers got a T Rex LP that year. How cool is that? I remember those early years extremely well, playing with Darren and James in the wild and exciting garden like little feral kids. It ended just after Dannielle was born and Sue and Robert separated.
The smallest of my aunts was Mary. To hear her talk or, as I remember most, call my uncle Adrian, you would never guess that she was only about 4 foot 8. I can see her now, knelt down on the floor, in front of the fire, thick, black hair down to her shoulders, rolling a fag. “Ade! Ade!! Adrian!!!” she’d shout, following up with a low cackle. I loved it. She was the epicentre of her family who willingly orbited her tiny frame. She was born in Calcutta, brought over to England and left at an orphanage. She was Afro-Indian, a mix that wasn’t, apparently, acceptable. I saw auntie Mary more than any other aunt as once a year our families would collide in an ethnic crash on the Isle of Wight. Her guardians owned a house there for the use of all the children they had cared for and their families. As I had no sisters I relished the opportunity to share a room with my stunning cousins, all girls together and I still recall Maria performing Kate Bush’s ‘Babooshka’ when we should have all been asleep. Her hair was as black as her mum’s and more than twice the length. She’d flip her head upside down, allowing this mane to tumble like tarmac, whilst wailing the chorus. Nichola and me would double up with laughter until one of the adults told us to be quiet.
I don’t know when they ended, those holidays. As we grew up, we all drifted apart I guess. I’m sorry for it now. They should’ve gone on for longer.
I said ‘farewell’ to her earlier this week, that fierce, wonderful auntie of mine. Though I really lost her years ago.
In between was my mum. About 4 foot 10 inches of fiery Italian stubbornness and beauty. I’m amazed my dad even bothered to try and tame her, his temperament being the almost exact opposite to hers. But he did and I think a little of her wildness found it’s way into him, making him the stronger of all the brothers. I am my mother’s daughter, blessed with the caution of my father. I’m not sure I command quite the same galactic performance, that’s what caution brings to the table, obviously.
It is no accident that these three women, women of substance, existed in different localities. To put them all together in even the same county could and often did, prove catastrophic, upsetting the natural balance of things. They are all like the earth. They have their own moons and planets in the form of their husbands and children, to complete their universe. As only one of the smaller planets, I can tell you now that childhood with them was exciting, bizarre, occasionally dangerous but always unpredictable. It just didn’t last long enough. That’s all.
You haven’t truly lived until you’ve struggled up a hill, in the rain, holding the hand of a 2 year old whilst pushing his year old brother in a flimsy buggy. I give up managing my own umbrella, opting instead, to the huge relief, I’m sure, of the other shoppers, to help Harrison negotiate his own Thomas the Tank Engine brolly and gripping his free hand tightly. A few meagre items bought and it’s about turn, back down the hill to home. By the time we reach our road Harrison has given up on his brolly too and is delighting in splashing in the puddles. Gabriel would surely love to join in but it has all proved too much and he’s out like a light. In fact the only way I know he’s still there is by the sight of his cute red wellies sticking out from under the raincover. I resolve to take them both back out again later, for a good old ‘puddle jump’. That’s the plan anyway, until, only yards from our door, the heavens open. Harrison laughs, Gabriel wakes up and I make a dash for it. We are the Three Musketeers. If there are places to go from Monday to Friday, between the hours of 8.30 and 6, then we go together. Inseparable. There are very few surprises however, and so when the skies decide to send us a rain storm of biblical proportions we see it as a challenge. Harrison tarries with his folded umbrella like a sword and Gabriel hoots with laughter as he watches me get wetter and wetter. When we finally reach the front door, there isn’t a dry bit on any of us. Maybe we won’t be popping out later.
“Look at us!” I say to Harrison, as I help him out of his raincoat in the hall. “Tut, bloody rain Harry, eh!”
“Yeah mum. Bloody rain.”
With my two little men dry and now ensconced in a Fireman Sam video, I get on with lunch. Tea cakes and a cup of tea. For three. I stand there, in the doorway, watching them both. Harry’s setting up his Brio train track and Gabe’s watching Fireman Sam rescue Sarah from the ice. The rain is relentless but it’s no match for us.
A year or so later, Harrison’s at nursery each morning and Gabriel’s at a toddlers group for three mornings a week. Our little band has fragmented. I pick up Gabe first, chattering non stop about the different things he’d done, he thrusts various models and pictures at me, which I welcome with a motherly pride. “Wow! You’ve done so much!” We carry on up the hill to get Harry. We stand with all the other mums in the playground. Harry comes out with two of his friends. He looks so grown up, with a serious expression on his face. He smiles when he sees us. “So, what have you been up to today?” I ask, with a hug.
“I got to play in the sandpit and water today mummy!” This was the best thing in the nursery, apparently. “Wow! Did you get wet? Did you make sandcastles?”
“No. We have to wear an apron. We’re not allowed to get wet, silly!”
We walked home, the two of them chatting, bickering a bit and looking tired. They slept on the sofa for a while whilst I busied myself around the house.
By the time their dad gets here, they’re wide awake and full of chuckles. I ask how his day went and he then enquires about mine. Harry and Gabe stop what they’re doing. They look up at me. It has never occurred to them that I may do something when they’re away.
“Well,” I begin. “Once I’d dropped off these two little horrors I had barely enough time to finish my coffee before the helicopter arrived. Then it was off to Egypt.” My husband laughs. “It’s no joke love. I’m afraid the Great Pyramid has been raided again! They needed me to assess the damage and uncover any clues to the perpetrators. Of course it was The Black Sphinx.” Harry’s mouth is wide open.
“Him again?” my husband asks.
“Mmm, afraid so. Anyway, I’ve put them onto someone else who can help.”
“Couldn’t you help mummy?” Gabe asks.
“Not if I wanted to get back here in time to pick you two up!” Harry is trying to form a word with his mouth.
“Helicopter?” his mouth stays wide open.
“Oh, it was only work. Nothing for you to worry about sweetheart.”
As they wander together back into the living room, I hear Harrison say to Gabriel, “Do you think mum’s Lara Croft?”
That’s me, I think, as I sort through all the laundry I’ve managed to get done today. Lara Croft!
This is a ridiculous way to spend a Wednesday night. To be roaming the house at half one in the morning, like some bloody neurotic ghost. I have my Blackberry in my hand so I’ll at least feel the vibration, as my breathing will surely hide the beep, of an expected text from Harry. The wandering from bedroom to bathroom is a selfish attempt at trying to wake up my husband who manages to completely bypass parental anxiety. I wish I could do that you know. It was the same 18 years ago, when Harry was born. If I wasn’t lying there with our newborn son clamped to my breast, I was pacing the floor with him, refusing to sleep, on my shoulder.
Right, I’ll text him again. See where he is. He said that Rhys would be dropping him off at half one. That was ten, whole minutes ago. I’ve been peering out underneath the blackout blind too. The wind is fierce and the rain looks pretty unfriendly. At least he’s not walking home. I hate it when he does that. I can visualise the route he’ll take and I pepper it with lots of miscreants, back from a night out. In my head it’s like a scene from ‘Shaun Of The Dead’ (and he hasn’t got a pool cue). I’ve got a text back. He says, ‘On my way bak, was in discord, had no signal soz.’ Reassuring. Apart from his appalling text grammar, he’s also a solo user of the word ‘soz’, for sorry. He probably got that from me. Or maybe they all use it now! Retro phrases are always coming back into vogue. So, maybe someone else has his phone, pretending to be him. Not really likely, and, anyway, it doesn’t matter because in about ten or fifteen minutes I’ll hear Rhys’ van pull up, the heavy door slide open and then Harry’s foot steps on the gravel path.
It’s now forty minutes since he text me that he was on his way home. Something’s happened. I’m back out of bed, on the landing this time. My husband has started snoring. No, not snoring. It’s more a sort of blowing through his mouth, his lips are making a flapping noise. He’s oblivious to the torment I’m enduring. Old sod! No, it’s not his fault. He’s right and, I suppose, I know, deep down, that Harry will be perfectly fine, if a little drunk. I know he has to live and being out at clubs, with his mates, is part of that. But what if Rhys has had too much to drink? God, I’ll text him again. I’m sure he’s sitting in the back of Rhys’ van right now but I’ll double check. ‘Shit Harry. Where the fuck are you?’ Let him know I’m a bit pissed off. I get an immediate response,
‘Nearly home’. You see, I said so. I’m going to get myself a large gin and tonic now. I’ll be in the kitchen all nonchalant and cool.
I can smell cider on his breath but he isn’t drunk. He’s had a night of memories that are his. I no longer have the right to know them. I casually mention that it’s way past half one. He casually replies with, ‘Yeah, soz about that. Rhys left early.’ I look at him over the top of my glass, ‘So I walked home.’
Great. I didn’t worry nearly enough.
“Hush Yer Gums!”
If you saw her in the street, you’d hold your bag a little tighter. If she were at a table near you in a restaurant, you would probably ask to be moved. But if she chose you as her friend, your life would never be ordinary again. She is Gemma, and you have been warned.
All make-up and attitude, I met her in the classroom. She stood in the book corner, eyes burning into me. I fixed my gaze on the floor. It had been a good many years since I felt the judgemental stare of a teenage girl and I didn’t like it. I barely nodded as a way of introduction and I dare say I passed a critical stare of my own, once or twice. But as she sat with the children, squashed on a tiny chair, I was intrigued. She was, in appearance, everything I’d been told to be wary about; blonde straightened hair pulled harshly back into a skinny pony tail, lip curling when not talking and, of course, white combats with trainers. However, I rarely listen and so there was no wariness on my part, just curiosity. In fact, it was she who was wary of me.
Underneath the ridiculously hard shell, I immediately saw the vulnerability. Outwardly brash, Gemma refused to go into the staff room, preferring instead the exclusive company of just Sarah (the teacher) and me. She would present us with fresh Pain au Chocolates on a Wednesday morning, a present from her Nan, who always got loads but then couldn’t eat them because of her diabetes. We’d scoff them in class during break time, as she told us her alarming tales of weekend mishaps, family disagreements and past outrageousness. Slowly her self-esteem grew and as she looked to me for advice, so did mine. Which is odd, as I wasn’t aware mine needed to.
Seven years on and there still is a wonderful naivety to Gemma. I don’t think any amount of living could change that. She has found herself a decent man, putting an end to the disastrous run of luck she’d had previously and ending a rather wonderful string of tales, it has to be said. But despite my lack of material, I’m relieved. Someone else can worry about her now, although, ironically, she probably worries about me more.
Look at you, with your long black hair,
White streak down the right hand side.
Your kohl lined eyes matching your black lips and rosary beads,
Anything that helps you to hide.
I’m smiling as I see you, in your blue lace petticoat,
Your 16 hole Doctor Martin boots.
A pirate on the good ship ‘Adolescence’.
With your gang of 4 recruits.
I guess right now you’re missing Rob still.
I can remember the pain of the split.
But there’s a boy at college who fancies you,
And he has his own bed-sit…
I see you at The White Hart Inn,
Working the bar, a favourite with the men.
Open your eyes more. Notice the attention.
Make eye contact now and then!
Oh, and remember John, with the red hair,
Who you went out with last year?
He’ll take you skating and he’ll want to talk,
Listen, for Christ’s sake listen. He won’t always be here.
Finally, I feel I should tell you
That what your mother said,
About roll-ups and Guinness not being for a lady,
Drinking alone seeming unseemly,
Speaking your mind as being foolhardy
And dressing just so as being untidy…
Well, all I can say is you’re a long time dead!
You’re doing just fine,
So do what you do.
Live a little more,
Love from you xxx
“I miss you. Every day I miss you. Why is it, though, that on birthdays, my birthdays, I miss you more?” As I sit here, sobbing uncontrollably, I ponder this thought.
Each day, since May, 2001, I have felt a yearning for your presence soar.
Each day I have thought of you and your irrepressible grin.
But it is today, over ten years later that I find myself inconsolable.
Not since my 36th, the birthday that bought in
My ascension to second eldest, have I been so distraught.
I think it is cathartic. I’m told that it’s the best thing.
But deep down I know that’s bollocks, I ‘m reacting to the thought
Of no party songs to sing.
From now on birthdays, for me, have to be big.
I do not see any other way to take the attention from you,
My beautiful boy.
You have my love,
Undying as it is,
But I’m taking back my birthday!
I shall celebrate it with a bang,
With a song and a whistle if I choose.
You will always be in my soul Ben.
Because you, I cannot bear to lose.
We sat, as a mixed bag of people, a mixing pot of age, gender and experience when somebody mentioned relationships. An uneasy silence descended as we each privately locked on to probably, the worst example of a relationship in our lives, realised that we could never talk about it and panicked. The men in the group muttered their dissent, leaving me with the general impression that the word ‘relationship’ wasn’t in their vocabulary. The gauntlet thrown, I picked it up. I spoke about a stereotypical mismatch in personalities between myself and the mother-in-law, which is akin to resorting to a dodgy Jim Davidson joke, I know, but I didn’t want to land anything too solemn in their laps. For although the word is there in my subconscious, the whole notion of relationships is as baffling to me as it is to the blokes.
I have tried to be like other women I know, forging girlie bonds, nights out, pamper evenings and all that but it isn’t me. I loathe the company of women in general and usually end up with one of their husbands, drinking ale in the kitchen and putting the world to rights. Which always seems to be enough to end the relationship between their wife and me. As I’ve got older though, I can tolerate these evenings if I have to and have learned to avoid the spouses and their alluring ale. However, all I have gained are many acquaintances but no real friends. At least whilst putting the world to rights I felt engaged and worthy, acquiring friends with similar opinions even if I couldn’t pop round to see them whenever. I’ve stopped bothering now, which is a shame as I was quite a late starter. In contrast, my family relationships have grown stronger. It took the tragic death of my brother mind you, but ‘every cloud…’ as they say.
Before Ben was killed, I had an extremely relaxed attitude to my nearest and dearest. The occasional phone call to the parents, barely any to my brothers. We got together a couple of times during the year, marvelled at how much the kids had grown, apologised (once again) for the lack of birthday cards and presents and then go back to our lives. There was no shortage of love from us all, just an appalling lack of social skills. Ben was the only one who kept us in touch and for a while after his passing, we all drifted. Of course, there were lots of other emotions flying around at that point, and the best excuse for not making phone calls is grief. Mum pulled us back from the brink, needing us, scarily needing us to communicate with her and each other. Ben’s son too, only 13 at the time, relied on us to keep his dad’s memory alive. Other than my children, no one has relied on me before. Not like that anyway. It’s daunting and it’s taken me almost ten years to rise to it.
©Lisa Lee 2011
Nuts In May
So, I’m the youngest of three and the only girl. What a place to be. My two older brothers had a gap between them of about a year and a half. I didn’t show up for another five years. It’s fair to say I was constantly hassling my mum for a younger sibling, playmate, wanting to emulate the relationship Nick and Ben had. Not to be, I’m afraid. It was just me and my teddy, Gladys.
My family isn’t a really close one. We don’t have cousins visiting regularly or aunties and uncles handing out money on our birthdays. We were largely forgotten by the relatives in Hampshire. Something, I think, my mum and dad had sought. Being the youngest and the only girl is a very privileged position. Nick and Ben both protected and educated me in a way that my peers just couldn’t. Whilst they were listening to Duran, Duran and Culture Club, I was shouting to The Stranglers and Theatre of Hate. I had the freedom and confidence to wear whatever I wanted; I followed no one. Though, for the record, I did have an almighty crush on Adam Ant! I suppose what I’m saying is that although we were quite detached we were also quite reliant on the power of three. Strange, but looking back that is definitely how it seems to me now; each one of us had a strength. Nick was honest, loyal, uncompromising and a boy of few words. Ben was full of tales, open, eager to help and a boy who wore his heart on his sleeve. I was a bit of both. Seemingly aloof, emotionally buggered, obsessed with the English language and telling elaborate stories. There, the ‘Power of Three’! Then one was taken away.
In 2001, on May Day, I was happily relaxing after a day of shifting gravel in the back garden. Kids in bed, mother-in-law sat watching telly whilst Nige and I cuddled up for the evening. Then the phone rang. Nige answered. A bit of time lapsed, I sensed something was amiss. Phones don’t generally ring at half ten at night. I remember screaming as he told me what I really didn’t want to hear. Ben was dead. He’d been testing a second-hand mower for a friend and. Well.
Norah was left babysitting and Nige got me into the car. I remember a dry mouth, no tears, numbness. We drove through Box and I can still see a family in their back garden, drinking wine, laughing and lighting candles. I really loathed them. To this day I glance at that house and feel a little remorse for my black thoughts that night. We went round the back of mum and dad’s house. Dad was standing at the sink washing the pots. “Hello Lizzie.” That was it. Simple as that. For a split second I thought Nige had got it wrong. One look at my dad told me he hadn’t. So many tears. I can’t remember my mum that night. It wasn’t good, of course, which I think is why I have such a dim recollection. We drank, gin and tonics I believe. We tried to find Nick who was languishing at some festival in Leicester I think. And, more importantly, mum recounted my brother’s death.
A beautiful, sunny day. Ben’s mate, Richard, went to a charity auction where he bought a lawn mower. He took it to Ben’s. Seb, Ben’s son, was at the skate park with his mates so he started to prepare dinner, chatting and probably having a beer with Rich. At some point he offered to check Rich’s new mower for him. Not bothering to put shoes on, he went up to the top of the garden. I’m not sure how the next bit went. I think he pulled the cable out from the mower, it was an older style one. Anyway, he was electrocuted and died before he hit the ground. Poor Rich. I can’t imagine how he felt. Ambulances arrived but nothing could be done. Just like that. Gone. He was 36.
Nine years on and it’s still difficult to comprehend. Every May Day I spare a thought. Every May Day I ring my mum. Every May Day I feel a bit nuts. There are little mile stones, some sad. The saddest one for me was when, on my 36th birthday, in 2005, I realised that I was no longer the youngest. Ben was. Always.
Life moves on. Time doesn’t heal anything. Time just changes it a bit. You never heal, I think you just learn to live with it. You incorporate it into your life and in many ways it improves you. My relationship with Nick is different now, more open. We have taken on Ben’s powers and although we are no longer The Power of Three, we are The Power of Two. And that is still quite a force to be reckoned with.
©Lisa Lee 2010