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
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