Reflective

Who Looks After You?

“Who looks after you?” is a question I’m asked most weeks and I usually answer with a smile and a shrug but actually the truth is I’m looked after by everyone and no one.

Family first. I’m not alone as both boys are still living at home and I’m hugely grateful for that. I have my big brother, Nick, who’s doing lots of work around the house so he’s a regular visitor too. The three of them fulfill very different needs in me: Gabriel has a huge sense of justice and helps me to pick my way through my the thoughts that bombard my brain continually, whilst Harry allows me to say out loud my darker, more unthinkable thoughts with no judgement and tremendous humour. They find their dad’s deterioration hard to watch, of course, and so when I’m at work they tend to stay in their bedroom. Although I would prefer them to take a more active approach to Nigel’s care, I’m not keen on playing the ‘guilt’ card. Besides, what do I really know? Could be their laid back approach that’s keeping Nige sane… I mean, to have the three of us constantly watching him isn’t exactly conducive to that relaxed, calming environment we’ve strived so hard for in the past twelve or so months. There’s a price for that, by the way, for the normality we’ve upheld. It’s being charged to our personal lives – Harry’s all spent out, I’m on a low budget and Gabe’s actually managing to save. Between us we’ll even each other out. Through Gabe, there’s Lois. Our very own Little Blue Wolf. I’m not sure I’ve ever met a lovelier person. Honestly, for one so young, so vulnerable, she takes altruism to a whole new level. A week seldom goes by without a message on my phone from Lo, checking up on me and seeing how things are; offering to relieve Nigel’s boredom with impromptu visits… With her own illnesses to combat, I am both amazed and honoured to include her as part of our family, and that extends to her own family too. Then there’s Nick. He helps without knowing it, aside from the obvious help he’s giving with the garage of course. It takes a huge amount of courage to continue to embrace a broken family such as ours. After a week or two away, working or travelling, he bounces back up our steps, not knowing how we are, how Nige looks or sounds: how the cancer has progressed. I can tell by his face if there’s a difference (being with Nige constantly clouds my vision of progression) and that’s an enormous help too. Spiritually, Nick provides me with a constant link with my other self; the Barnes girl with the ‘Doc Martens and roll-up’ attitude who I know will be a huge help to me in the coming months and years. I feel protected when he’s near, without him doing or even saying anything. Which is perfect as he talks very little!

Never one to surround myself with friends, I have found myself quite overwhelmed by the few I do have: Marianne checks in like a warm arm around my shoulder, allowing me to speak or not speak, hearing the silences as well as the rants. She’s done this for me from the very beginning, choosing to ignore my request for isolation and giving me what I actually need; support, as well as the occasional coffee and cake outing. She’s smart and bright, sugar-coats nothing and wastes no words. We’re like two peas in a pod. Gemma gives me her naive perspective on things, paring it down to it’s core. She has a need to understand me, and I do too, so chatting with her often reveals things about me I never knew! She has thanked me over the years for all I have taught her, little understanding just how much I have learned from her. Though, of late, I think she’s realised. Michelle is a haven of fresh air and woodland walks, with the occasional bottle of wine thrown in. She symbolises a future of sorts, my future here, on the Hill, for though I’ve known her for the past five years, our friendship has only really grown since Nigel’s diagnosis. Since then we’ve walked miles of a morning with her dog, shared stories of our pasts and even completed a 26 mile Hike for Macmillan together.

There are more, of course, but these are the friends and family who take care of me without first having to ask. They all just shove their noses into my business, make me face uncomfortable truths and listen. I don’t know how I’d manage without them. The thing is, I don’t do a great job at managing with them either. Oh I think I exude strength and I know I have everybody’s admiration but I am unravelling. I can feel the facade cracking, the tears are constantly waiting to drop and in the darker hours drop, they do. No one can help me. Not with this bit. There are no words, you see. It’s all emotions; raw and terrifying. Now, I know some of you reading this will offer me help (and thank you) but, honestly, I’m right. This bit is for me. If I don’t have a part of myself that is unfixable then how do I know that I ever went on this journey? Where’s my scar? It’s for me to figure out and then to fix, when I’m ready. And I absolutely will. I just can’t tell you when.

So if I come across a little unhinged from time to time, that is just me looking for the best way to manage my raw emotions. It’s temporary (I hope…) and once all the pieces have fallen back into place, I’ll be fine. We will be fine.

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Poetry

Love Comes In Many Forms

You say I don’t cry,

I’m amazing and strong.

You are oh, so proud of the fact.

But I want you to know,

That you are totally wrong,

Most of my life is an act.

 

You think this because,

When you’re here, you are not,

You hear me, but you don’t listen.

But I want you to know,

We are the best we have got,

Not all of life’s treasures glisten.

 

Should I list all the times that my life falls apart,

Should I record every tear, every ache in my heart?

 

Is that what you want,

And is that what you need?

To see my damp eyes sad and raw?

‘Cause I want you to know,

You can visit here to read,

Or push unannounced through our door.

 

But you don’t, you won’t.

Of that I am resolved.

But keep your guilt under your hat.

‘Cause I want you to know,

You’re eternally absolved.

Unconditional love’n all that.

 

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Diary

Life Continues…

I made it! Seven weeks of getting up, getting dressed and getting through the Bath traffic to work. I’m not going to lie, there were days I thought, “No.” But with with my eyes on the future and my foot on the accelerator, I made it.

Week 1

Every first week should be a three day one – a perfect length for my reintroduction to the workplace. Time enough to get the measure of the children, of the new staff and to source resources for displays. The workplace has altered significantly and for the better. With a larger staffroom in the middle of the school, both KS1 and KS2 can mix together, giving a brilliant feeling of continuity throughout the school. It also allowed me to be fairly anonymous for that first week, to observe old colleagues and familiarise myself with their personalities, quirks and patterns. The children in my class are all pretty fabulous. There are a particular group of girls who sit together and they are so bright! I mean, not just academically but socially too. You can have a proper conversation with them and there’s no whining, whinging or sulkiness – bliss and totally without precedent for me. Sure, there’s a few tricky ones but so low level that in any other year of my career they wouldn’t even warrant a mention! Anyway, the children are my favourite bit of my job – all kinds, all personalities, all welcome. The new staff though, well I do take a while to warm up to adults. By the end of this week I really hadn’t formed much of an opinion. What? It was only a three day week, remember?

Nige had his first week at the gym too. In fact, his first visit was on my first day back – Wednesday. He did really well; walked on the treadmill, did five or six minutes on a bike and then Chris (his Physio) worked on his balance. I stayed with him, not really for him but more for me. I know that if I asked him later about the session he wouldn’t remember much of what he did. At least now I know what he is capable of, which is pretty heartening.

Week 2

Oh how quickly we get back into our stride! I park the Citroen a way down Warminster Road when I get home from work to make me walk a bit. It’s working actually and that short stroll in the morning is just enough to ease me gently into the world of others. As I settle into my new routine, so the children do too. One afternoon a week, when neither Mr B or I are in class, they relax a little too much and just the odd one or two let themselves down. Consistency is the key, and so, at just the second week, I started to  seriously think about returning full time. There! I absolutely said this would happen and I cannot allow it. When I’m stood in the playground or working with a group in the classroom, it seems perfectly logical, but once I get into the car, engage gear and pull away, I see the reality of it all. As I get ever closer to home, life shifts into full focus and full time work is just way too blurry.

Nigel’s second gym session and I left him there, giving him some privacy to natter to someone other than me and giving Chris the opportunity to get to know Nige on a 1:1 basis. I drove over to Hartley Farm and had a coffee. It’s such a pretty place but a tad pricey so maybe it won’t be a weekly thing… we’ll see. It was my birthday on Friday and the very wonderful Marianne brought food round for a vegan, birthday meal! Nige loved chatting to Mike and I just felt incredibly lucky to have her in my life. Then, on Saturday Nige and the boys took me to Dough for pizza. Well, I guess I took us. In the van! So there  we were; individually broken and collectively barely holding things together but sat in that restaurant, on a busy Saturday lunchtime, sharing idle small talk with the staff and each other… it was quite possibly the most normal we’ve been in yonks.

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Week 3-4

The plateau. You know, where things just cruise along, no bumps in the road, no nasty surprises, just moving gently forward. That’s the goal, of course, and I was relieved to have got there so quickly. Nige too was coming on in leaps and bounds at the gym, affording me an extra hour of solitude, midweek, to enjoy a coffee and a mooch. A fortnight of this and then we headed back into the world of Glioblastoma.

It was Sunday, a day or two after my dad’s birthday so we were heading over to Calne to deliver his present. We stopped at Sainsbury’s in Chippenham, to save us having to call in on our way home. As soon as Nige got out of the van he looked a bit confused, then, after just a few steps, his whole right side gave in. Thankfully I was stood on that side and took Nigel’s weight as he slowly crumpled into me. A wonderful lady asked if I needed help.

“Yes please…”

She helped me get Nige to the shop foyer, where another lady got us a wheelchair.

“Shall I phone for an ambulance?”

“No thanks. He’ll be fine – he has a brain tumour and this is – yeah. Thank you but we’re fine…”

After Nigel’s last stint in hospital, I promised him that he wouldn’t go in again…

He was okay afterwards, we spent a few hours at mum and dad’s and then came home. Later on that evening the same thing happened again, smaller but clearly a seizure of sorts.

Week 5-7

It was very novel to be going into work the day after Nige was taken ill. I told a few of my colleagues what had happened and was overwhelmed by their words of kindness. I hadn’t really thought I’d been isolated until then. The kids in class are still awesome. Yes, they’re finding their mischief but with that comes their personality and their story. Super little people.

Nige has increased his gym sessions to twice a week and his steroids and anti seizure medication has increased too. As I sit here, having survived term one alongside my beloved’s progressive illness I feel quite proud. Fucking exhausted. But proud.


NB The cat, Eccles, has made a FULL recovery and meows continually for food, food, FOOD! 

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Diary

Life Begins…

Well I knew this day would come but, as you know, I’ve said that before… And if that day had actually come, then this one wouldn’t have. If you follow me.

September.-Back-to-work-back-to-school-back-to-books-540x804The new school year usually starts with at least one inset day to ease everyone in gently and this year we got two. Perfect for someone worried about connecting with anyone other than family and who hasn’t had to put an outfit together in almost a year.

So, up early on Monday and managed to cobble an outfit together that looked pretty decent. Nige made me a coffee and we chatted about the weather and what was happening in the world. We haven’t done that in quite a while, Nige preferring to bring our coffee up to bed. At 8.15, with mixed emotions, I grabbed my things and gave him a kiss goodbye.

“Have a nice day!”

“I’ll be home by 1…”

“Will you?”

It’s strange. As I sat in the hall, listening to Sue outline the new term and read through policies read through many times before, the past year just melted away. As if I’d always been in that seat, at that table, in that hall, with Gemma to my right and a bowl of Skittles in front of me. Weird. Then, after that was done we had to go to our classes. Mark wasn’t in so I was left pretty much to my own devices, just a few jobs left for me to tackle. My mind drifted back to last year, when I sat in the very same classroom, cutting out letters for display boards and preparing my desk for the rest of the first week. Only this time there was no desk to prepare – a years hiatus meant that everything at Roundhill had moved on without me – and my class too were grown up by a year.

As promised, I was home by 1pm. I felt quite accomplished, as I trundled along in my van. Refreshed, renewed, hopeful that this little bit of old normality might just balance up the abnormality of my life. For though it felt oddly surreal at work that morning, as I opened the door and was greeted by Harry and Gabe still in their pyjamas and an emotional Nigel, with his hearty,

“Hiya! It’s lovely to see you again,”

I reached up on my tiptoes, planted a soft kiss on his cheek and thought,

Nah, this is surreal, right here. Back there? That’s normal…

I’m going to be fine. I can’t speak for everyone else though.

 

 

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Diary, Reflective, Thought of the Day

Who are you and what have you done with Lisa?

 

In conversations with myself, I have formed many analogies. The analogy of an analogy is a familiar scenario that perfectly describes the indescribable, nay, ludicrous scenario you actually find yourself in. It somehow normalises the whole thing, making you feel less insane and on a par with the world around you.

“You remember Terms of Endearment, that tearjerker film of the 80s, where Debra Winger lay dying with loved ones stifling sobs? Or Guardians of the Galaxy with a young Peter Quill refusing to watch his mother pass away? Well, we were there; seated uncertainly around Nigel’s hospital bed, sharing stories, all raw emotion and tears. Disbelief and hopelessness building up within, filling every internal void. Then, as if the universe needed to take a pee, the pause button was pressed. Whilst on ‘pause’ we seem to have entered a different dimension, where things appear normal. Where Nige is well, working in the garden and sawing up wood for a winter he may not see and, instead it’s the family cat that’s taken on his illness; lying on his deathbed, fighting for every breathe… But we can’t appreciate any of this or capitalise on Nigel’s good health because we are too busy listening for the flush of the toilet, for the universe to return and for the play button to be hit once more.”

c9a408e98943f6db7d3d5856b7922ed2--eckhart-tolle-dark-cloudWhen I say life appears to be normal I mean that Nigel appears to be well… from deathbed to flowerbed in just a few weeks. The steroids have made him emotional of course, and the tumour is still wreaking havoc with his memory and vocabulary but in comparison to the Nigel on pause, this one is fucking dandy. But as we navigate through this other world, we still seem to be stuck eternally in the real one, paused or not. The only difference is that the bed covers have changed from being thin, blue hospital blankets to a deluxe feather quilt, the view is no longer a square courtyard but wild birds and flowers blending into the woods at the back of our house and the visitors aren’t crammed around the bed but coming and going, with room to move around each other. Everything else is the same though; same tears waiting to spill forth, same emotions coursing through our bodies and the exact same illness trying to steal the life of a man beloved to us all.

“It is taking every fibre of my being to resist curling up in an embryonic pose in the centre of the bed, with the quilt heavy on top of me and not move forever. To open the post box, retrieve the mail and open it. To care even the tiniest bit about my appearance. But I’m winning, I think. At least, I am at the moment. You need to do the same Harry, ‘always forward, never back.'”

So while we await the inevitable in one world, we have the opportunity to create many 3064d43c36ca1fea6f21a94628603697--black-watercolor-tattoo-watercolor-paintingsmore memories in this one. We’ve been given a golden ticket to a world where we still have the husband and father we so adore, with added quirks and oddities. But there is a cost; Eccles. In essence we have swapped one deathbed for another and, though terribly sad, I’m okay with that. Eccles, our lone cat, has dodged many bullets in his 16 years and has led a life of unparalleled decadence. Anyway, in cat years he’s 76 and by anyones reckoning, that’s a far more palatable life expectancy than 54.

That’s your lot. For now anyway.

 

 

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Diary

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…’


Wednesday

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.


Thursday

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.


Friday

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.


Monday

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.


Tuesday

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 🙂

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