Gone upstairs

a personal journey through grief and change


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Sunday

It’s Wednesday 23rd November, but I keep thinking it’s the weekend because it was…2 years ago. I am travelling in both time zones at the same time, re-living the emotions, seeing my son’s face in the air in front of me. This is what I wanted to happen – to bottom out some of the stuff I have ignored and find out how I really am. 2 days ago I woke upblogger realising I’d buried so much anger – for years, since childhood when my mother died and I just had to get on with life without one.  Anger was a fearful thing, not allowed… my father held all the rights on that one, losing his temper and shouting at us until that is all I can remember. I was saved when I was sent away to school… But I buried the cry.

So the motherless child also loses her son – plenty to be angry about! But no – I have accepted it. This happens in life – other people have a much worse time of it… of course they do. I have nothing to complain about, my life is blessed and I am loved. Grief doesn’t know this. Anger has to have it’s part – resentment that it isn’t fair has to be felt and acknowledged before it can be dismissed… So there it is: I can name it. I lost 5 years of my life to Sam’s brain tumour, worrying, trying to help, caring for him, being a servant and sounding board. He was often nasty to me – to us – resented us, blamed us… “You brought me to Loughborough and I hate it!” “You sent me to school!!” “You hit me!” – sorry, that’s what we were taught to do back then… 😦 “You argued with Rebecca and frightened me!” Sorry, sorry, sorry… that’s all parents can say. We can’t change any of it, please forgive us...

We were reconciled before the end. We were forgiven and forgave. Only now I recognise some of the cost to myself, but I bear no grudges toward him: to face childhood hurts is to grow up. I am not angry with God – but perhaps I am angry with myself…? Whatever it is, I choose to release that resentment, recognising that many of the choices I made were exactly that – my choices, me trying to make things better. No-one made me a slave to his suffering: yes, my life was forever changed, but it’s alright – I’m OK and I still have some life left to live…  Life isn’t fair and shit happens – get over it. Processing, processing, the little wheel is turning in my soul as grief works it’s way out… I see his face in my mind’s eye – the pictures I have posted here – and I can weep at last.

On Sunday we were getting very near the end – but we had no real understanding of that. I spent quite a lot of time with him – he was in a good mood, wanted to talk about The Imitation Game, what it was like to be so intelligent, socially awkward, misunderstood… Sam wasn’t gay but he felt ostracised for all sorts of reasons. I’m sure had he not had this disease he would have been brilliant at something: I’m also sure he would never have fit into society, had a 9-5 job or been in any way ‘normal’! It is so painful to me to know how he felt as a child, bullied, rejected as different – how he would hide in the library from the other boys and simply couldn’t accept the system. How could we know what was going on inside that brain when he didn’t tell us? When we moved to the Midlands he hated the Grammar School – which was opposite our house and we thought would help him achieve what he was capable of. He couldn’t stand the uniformity and ambition and tradition, the sports and forces afternoons… all those fees for 9 GCSE’s and an angry young man! Yet he found a way through it all and was at peace before the end: for that I am eternally grateful.

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He transferred to the local college for 6th form and eventually found a couple of friends who suited him far better – James and John. James had been to the hospital on the first day and back to the house a couple of times since. This is John, visiting Sam for the first time for 2 years. They were so happy to see each other! Sam used my computer to show John what he’d been studying about business and presented a small (but large!) hard-drive: “John, this contains everything I need to get my multi-million dollar business off the ground!” Maybe it did – he had been collecting material for long enough. Not many days later I put that disc in an envelope marked with his registered company name: AIRBORNE MARKETING, HEAVEN and it was buried with him.

Meanwhile, he hadn’t forgotten it was Sunday, the day of our agreement, and rather sheepishly said that actually this bed in the front room was rather convenient and cosy! In the afternoon he entertained another visitor from his regal position – a friend he hadn’t seen for a while who’d moved away. We’d done our best to let all those who had invested time in Sam and been close to him know what was happening and their visits and phone calls made those days really special. We had always hoped and prayed that when the end came he wouldn’t be reduced to a wheelchair and dependency as so many with brain tumours are – that it would be quick and painless. But this way was the best of all – long enough for family and friends to see/talk to him one last time, long enough for us all to adjust…

I was a lovely day – reminiscent of the Sunday a week before when we had all sat watching Lord of the Rings. The roller-coaster had made a few climbs and dives in between! Now it was approaching the end of the ride. That evening was an extraordinary precursor to the finale, as Martin came in to spend the evening with his son and I went home to bed.

Their relationship was never easy – the father working so many hours. He adored his little son, full of character and smiles, obsessed with ‘muke’ and later Star Trek, computers when they arrived. He would do anything for him – but despite that the resentments grew, as they always do in teenage years. “You are my father, not my doctor” – a line drawn at the start: so much pain for the impotent doctor. Yet the boy began to soften, open up, talk… and past issues were exposed and gradually cleared away: love triumphed! On this last evening he made room for his father on the bed and said he wanted to show him a movie…

The film was extraordinary: The Diving Bell and the Butterfly. It is about a man in his 40’s who has locked-in syndrome: he can’t move any part of his body except one eye, yet his mind is whole and well inside. He wrote the book by blinking his eye to communicate. He dies in the end with his father standing by. I haven’t had the courage to read or watch it yet, but Martin said he couldn’t believe he was lying beside his dying son watching a father crying over his dying son… I’ll tell you now what Sam said the following morning, when Martin asked him why he had picked that movie?

“I wanted to show you a film about a man who defied death”


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Sam back in charge

Soon after settling Sam in his “new” home I’d left him with Becca and some friends who turned up. The thing was, he couldn’t be left alone, even to sleep – we didn’t know what might happen. This probably didn’t make any sense to him, as he couldn’t remember the times when he’d lost consciousness in hospital… but I don’t remember him complaining and at 10pm when the night nurses (miraculously!) arrived he didn’t object. They sat in the kitchen at the back while he slept in the front room. They would have helped him onto the commode or cleaned him up if he needed it, but once he got home he was no longer incontinent and managed to walk and support himself the few steps to his downstairs loo. The commode was never needed!

img_2824At 7am on Thursday 20th November 2014: I went back into 8c to relieve the night staff. Here is mum to feed you, son… what can I get you? How are you? And he was well and happy, loving being home with his cats. He struggled into his old dressing gown and even let me take a photo…”Look everyone, I’m still standing!” I don’t remember if he actually ate anything and no idea how he felt…we were fast approaching the point where I was to ‘go away and let me look after myself, please’… though he did appreciate the help I could give fetching and carrying. He continued to completely ignore his left side and just work round it.

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It must have been that morning he told me he’d been on the phone to Dean and his healer had got 10 others together from around the world to “chop up his tumour and send it away”. I don’t know much about psychic healing so forgive me if I am sceptical. All I can say is it gave Sam hope – or is it that brand of ‘faith’ that is simply a mask for denial? We Christians see enough of that so I can hardly point the finger 😦

It must also have been that morning that he told me he didn’t want to take the steroids anymore… Oh boy. Sam was back in charge and he simply didn’t want any medical intervention! I tried to persuade him that it would be stupid to stop them suddenly and he should do it gradually and he agreed to take half the dose. Getting those last 2 pills down him that morning reminded me of his very last dose of temozolomide on the last day of radiotherapy at Easter 2010: he was doing it against his will and only to stop me nagging… 😦

We knew this would have a very negative effect as soon as they wore off. It was only the dexamethasone that had brought him back from the brink and he would soon find the symptoms returning. How long did we have? It might look as if he could go on and on – how did this happen after nearly dying yesterday?! – but it was Becca who had found a web page that said with young brain tumour sufferers they could be walking around and dead 2 days later. With other cancers the organs gradually shut down one after the other as it spreads through the body, so it is more gradual. But brain cancer doesn’t spread into the body: the blood brain/barrier both prevents this and stops conventional cancer treatments going the other way. So there is just the brain to shut down – and of course when that happens…

On the other hand, we were aware that one of the side-effects of steroids is irritability and mood changes. Sam’s grumpiness the previous night – and what was to follow over the next 48 hours until the dex was out of his system! oh dear! – could well have been due to that. Or not. The lad had a massive brain tumour – of course it was going to affect his personality… 😦

We were getting on quite well when a couple of nurses arrived at the door. They had come to assess his need for nursing care, bless them. Apparently 2 others had come the evening before and he had sent them away! And that is pretty much what he did with these 2 as well… “What do I need you for?” “Help with getting to the toilet and washing…?” “I can do all that myself!” He obviously didn’t remember anything from the hospital!  But this time I was there…

I say – rather forcefully, rather crossly – “OK, Sam. If you can do it yourself, get out of bed, go upstairs and take a shower!” He throws off the covers and pulls himself to his feet. He holds on to the bed and gets himself to the foot of the stairs. The 3 of us watch as he puts his weak left leg up a step at a time and uses both hands to  pull up the banisters… (well it must have been just the right as the left was useless). He reaches the top and we hear the water running… What a stunning display of stubborn willpower! I tell the nurses I will call them back when we need them…

That is not the only shock of the day. 20th November Sam is not the same as 19th or 18th or 17th November Sam: he is now master of his own destiny and means to prove it to us. As he finishes showering I call upstairs, Hey Sam, while you’re up there find some clothes and get yourself dressed! He does! He comes back down and sits on his bed – surely exhausted? He puts his head in his hands. I say, OK, well done. I think I’ll just leave you for a while then: I need to go back and check on Becca – she’s pretty tired after spending those nights with you on the ward.  I leave him alone.

Back on the top floor at Burton St I sit on Becca’s bed and tell her what’s been happening… (This is when she told me about the website information: don’t be taken in by it, mum.) I say, I’d better ring Sam and see how he is. He answers the phone – to answer at all is pretty unusual for him actually… “Hi Mum, I’m on the way to the cinema” !!!**&%$***!!! WHAT??

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The film he wanted to see wasn’t on until the next day, but he said he’d just wanted to prove he could do it. He did in fact return to see it on the Friday: it was one of the Hunger Games films. Must have been part 2. By Friday I’d given up keeping watch. Becca also commented that if he was going to do this sort of thing she was going back to Brighton – which she did on Thursday afternoon: “Call me when you need me Mum”. 

Our roller-coaster was flying along and we could barely hold on. I don’t remember which friends came round or what I did for the rest of the day, but he was obviously able to manage without us. Fortunately he was still willing to have the night nurses to keep watch while he slept, which meant we could.

One other thing happened: at about 9.30pm our lovely GP turned up on our doorstep. He’d just been to see Sam and spent 40 minutes trying to persuade him to continue the steroids – with no success. The 3 of us sat in wonder at the determination and sheer wilfulness of Samuel Dyer. He was right really, it was what had got him this far and why shouldn’t he continue this way? He believed in himself and the path he had chosen: he had faith…imgp5960

On Friday 21st November Martin and I had a day off. We visited Sam in the morning, but then each went out for lunch with our friends/mentors and tried to catch our breath. So tomorrow, Monday 21st, I will have a break from blogging and take up the story again on what was Saturday 22nd November, which this year is Tuesday. Thanks for reading! x


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Sister to the rescue

The challenge with revisiting the days leading up to Sam’s death is to remember them as they were at the time when we had no recognition of what was coming or how long we had. We simply stumbled forward blindly, doing what needed to be done, going with the flow and responding to the needs in front of us.

To say we found amazing grace as we did that may sound trite, but for me it was true. I have an inbuilt response that numbs my feelings in a crisis. Martin with his medical instincts and general anxiety levels undoubtedly suffers more at first and then adjusts later. But I think we can both say that through those weeks… we coped, we felt held.  Of course when you are in the middle of something the body’s adrenaline kicks in and somehow you keep going, but we also had certain levels of peace and acceptance and knew what to do: we were carried.

None of that necessarily happens in the revisiting. Looking back from here, the shadow of inevitability lies heavy on the path, oozing sadness and regret. There is no grace for me in looking back on any part of our long journey, anymore than there is in looking ahead. I cringe when I read my old blog posts! I don’t know how we managed the months with Jessica or the media coverage. I realise that many of the things that made our story public knowledge would not have happened if I hadn’t been blogging about our journey! (And here I am doing it again – oy vey!)

But that is why I want to look back now, to prod and probe, to see through a clear lens, see it for what it was rather than shrouded in a haze of drama and activity. I want to get a better handle on what actually happened and where Sam was in the middle of it all – and how I felt and feel as his mother. I have been numb for so long, protected by anti-depressants, unable to access my feelings. That is of course a blessing and relief, but to be honest I also feel guilty that my response to the loss of my son is so cool, so measured. The ending of a 5-year anxious wait is undoubtedly something of a relief when it comes, but the loss, the LOSS, of who he was and should have been had been going on for years. That is what comes back to strike us to the heart. That is what we grieve over – all that promise lost.

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He was a lovely little boy but we know we lost that little boy a long time ago. No-one’s sweetly remembered childhood is ever coming back – there’s nothing we can do about that… other than have grand-children!  He grew into a withdrawn schoolboy and self-sufficient teenager with his own particular obsessions and amidst the busyness of family life it is hard to pinpoint when he began to slip away from us.

We don’t know, for instance, how long the tumour was growing before it was discovered: it must have been very, very slow to have reached such a size with no symptoms for years. He lost his joy and life, adolescence happened and we moved to the Midlands; he hated school in Loughborough and the internet took over… You don’t realise it is happening at the time and I heard his version of events much later. Surely this is a story I have told before… it feels like a damning summary of my failed motherhood. It was quite amazing how the years of illness made way for confrontation and reconciliation between us.

Of course this process happens in most parent/child relationships, but I don’t think Rebecca ever lost that very special sibling connection between a big sister and her little brother.  As someone said recently, there are no memories of her childhood in which Sam does not figure: he was her compatriot in the land of childhood, her closest playmate. Appropriate then, but all the more painful, that she was the one who discovered him in distress on Saturday 15th November 2 years ago. I was on a train back to the Midlands when I received a text from Martin: “Becca has called an ambulance for Sam. Ring her”

Sam’s sister had been staying with friends in Loughborough before meeting up with us. She hadn’t seen him for a while so that morning decided to surprise him. But when he eventually managed to answer the door, he was in some distress and disarray after stumbling downstairs. He simply said, “Help me, Becca” 😦 😦

The pathos of this moment is almost too much to bear. Sam, who had been so strong and determined to ‘beat this thing’ finding himself overwhelmed by his own body and his sister catching him in her arms, wrapping him up and sitting him down before calling 999 and then her father. I was miles away on a train while my 2 children faced this alone.

But if I had been there instead of her? Would he have asked me, been honest with me? Would he even have answered the door? I don’t know – he had done so much to protect us, his parents, from anxiety about him. He hated us ‘snuffling around’ his life! Perhaps his childhood friend was the best person to arrive at that moment. She could see straight away the change in him, whereas we had been living with a slow decline and may even have missed it. She could see he had left-sided weakness, that his arm hung limp and his leg wouldn’t move properly. There had obviously been some sort of growth or bleed in the tumour resulting in loss of function on the left side. But Sam himself didn’t seem to be aware of it: he apparently also had left-sided visual inattention so to him that side of his body didn’t exist!

Martin and Becca decided to cancel the ambulance. What good would a trip to hospital do? What could anyone do for him? He wanted to be in his own home. It wasn’t a life-threatening event yet: this was the progression we had both expected and dreaded. So I made my way to Loughborough as quickly as wheels would carry me. Martin who had so recently returned from France to a weekend on-call, left his patients and came too. We all convened at 8c Park St and soon the 4 of us were together in one place, hugging each other, assessing the damage and deciding what to do next. Being a mum I cooked a meal with the few things I found in his fridge. Being Sam he snuggled up on the sofa with his cats and family around him and asked us to stay. We made the usual jokes and decided to settle in for the evening and watch ‘The Lord of the Rings’ trilogy again… What else would the Dyer family choose to do?!

As I write, 2 years ago at this time that is what we were doing – looking after our son and brother, supporting and comforting each other, with no real idea of what tomorrow would bring  – while watching the brave hobbits on their impossible journey to defeat evil.