Gone upstairs

a personal journey through grief and change


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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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Catching our breath

This process is challenging. Writing every day is immersive – I do feel as if I am back there 2 years ago, or at least watching developments from the corner of the room… It’s Sunday morning now, 16th November. I can’t remember but I am guessing Becca spent the night at Sam’s house. It’s time for me to make bacon butties and work out where we got to with LOTR…

Tolkien’s tale of middle earth was embedded in our children at an early age. Theseimage-1 photographs were taken in Chicago in 1995 when Sam was 8 and Martin had almost reached the end of the third book. They were keen to have the next instalment at every meal to find out what happens at the end. Martin did a sterling job, putting on voices for all the characters. He had a particularly ridiculous camp one for Gandalf which made them both giggle (“Do Gandalf, Daddy!” “Oooh hello! I’m Gannnndalf”) You can see Sam is nearly asleep over his Chicago pizza but the book is ready on the breakfast table the next morning…! We finished it one sunny morning drinking coffee on a restaurant pavement in the shadow of the John Hancock building 🙂

These are the things that make memories. Hunting for these half-remembered photographs brought back many more. There is comfort in it – reminders of happy times, reminders of Sam and our family life back then. Nothing can take these things away – they are our treasures. I am glad I took so many photographs! I said before, these years would have been swallowed up by time whatever happened later on: we have already had to learn to die to the past in order to move forward and grow.

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Sam in around 2006

So – we are all Lord of the Rings fans. We eagerly awaited Peter Jackson’s films and each year made a family visit to see them as soon as they were released. They were not quite true to the book, but close enough for us – we loved them. We bought the extended DVD’s and Sam frequently watched them again. Later on he even travelled down to Brighton to visit Becca so they could go to an all night screening of all 3 films! She fell asleep I believe… It was the obvious thing to do together – watch the trilogy for what turned out to be Sam’s last time. “There’s some good in the world, master Frodo, and it’s worth fighting for” “One thing’s for sure Frodo couldn’t do it without his Sam” “We can only do our best with the time that’s left to us” “the smallest person can make a difference” “We may not defeat them, but we will meet them in battle nonetheless!” “No man should have to see his son die” “How do you pick up the threads of an old life?” Deep echoes of truth that help us all on life’s journey.

Our Sam – he was Samuel, but I wish I’d had the courage to name him Samwise! – loved these ideas and had plenty of others of his own. He was a thinker, an amateur philosopher. He knew himself well by this stage, had talked through his childhood issues with me, addressed poisonous relationships from his student days, knew his strengths and weaknesses.

He was also a wizard with words: we always tried to get him to write and when he did it was stunning. He could argue the hind-legs off a donkey; he could turn something round and send it straight back at you. He posted crazy videos of his opinions and thoughts on You Tube, most of which we find embarrassing, but apparently he had a following. (If you are inclined you can look up Scratch 47) He had his own spiritual approach to life. He felt entirely misunderstood by everyone else and regularly ranted about it to his facebook friends!

Here is a sample of Sam, culled from his page by his fb friend Duggy Dyer.(Being so clever you’d think he knew Duggy was really me, but he chose to ignore that… “Duggy please tell Mum” “Mum says…”) Anyone who was fb friends with Sam in 2012 will recognise it…

“I’m a 25 year old hermit introvert with an 155 IQ who is surviving terminal brain cancer 3 years going now with doses of hands on spiritual healing and massive doses of illegal cannabis resin, who went on national TV twice to out himself to help other people despite being sick of society, and by the way despite being functionally atheist I was touched by an inexplicable healing heat (yes, you can say it, God) during a Christian evangelist meeting and am wrestling with my purpose/goals/health/social life/finances, so please don’t think I’m an egomaniac, know-it-all, depressive, or angry misanthrope, because I really like individuals and even despite all of that don’t want to make you awkward because the only way out of all of this is the communication, warmth, and understanding that I will never ever admit I secretly crave…

 “…my mind and freedom to choose is the only thing I have left and I’ll never surrender that no matter who decides to be condescending or mouthy, because if I do, I am the victim they say I am. So you’re stuck with me, my scatterbrain, my motormouth, my broken heart, my social anxiety, my death sentence”

 

This extraordinary and clever young man (155 IQ) was our son. We were the ones stuck with his ‘scatterbrain, motormouth, broken heart, social anxiety and death sentence’ – though he never burdened us with them… apart from maybe the motormouth! It’s good to remember him and to recognise what he was up against, day after day, inside that head of his.

During that precious weekend, if there had been any doubt in our minds, it became obvious how badly things were deteriorating in his incredible and flawed brain. The boy who had memorised all 176 episodes of Star Trek TNG and their directors when he was 10 or 11 couldn’t remember his computer password. He couldn’t get on-line… This really was a major blow, but he was so happy to have us around he didn’t make a deal of it. I wonder what he thought was happening…

That evening he thanked us. He said how much he’d enjoyed hanging out with us all, how much he appreciated it. It’s true, it wasn’t a common occurrence. Becca lives in Brighton, Sam himself usually didn’t want it. The 4 of us struggled to find something in common once the Lord of the Rings years finished. Christmas Day was our family highpoint, sometimes birthdays and less often a film we all went to see – when Sam had usually already seen it illegally pre-release on-line!

Our time together had been so restorative that at the end of Sunday 16th I posted this on facebook. “Sam was really unwell yesterday and we were preparing for the worst, but he’s made an amazing recovery and seems almost back to normal this evening… Lots of good family time was had by all and though the rest of us are pretty tired going into the week, all is well…”

For now.


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Advance warning

2 years ago tonight I was staying with my father and step-mother in Totnes, whiling away a dark Friday evening, watching TV or reading, with no idea at all of the life-changing events about to unfold. It had been my Dad’s 86th birthday the day before – I’d gone down to see him for the occasion. Now I was looking forward to getting home because Becca was coming up from Brighton for the weekend to see the flat we’d been renting in Leicester – particularly so that she could understand why we had decided to buy the house from our landlady!  It was a rather crazy decision as it would be our 4th property…  But we knew it was too good an opportunity to miss.  It was only later on we discovered quite how good.

I also needed to get back to check on Sam, who had been a bit off-colour for a while with what he described as a ‘bug’. I’d called the doctor in to see him while I was away, but apparently she had said to rest – and think about getting another brain scan. He hadn’t had one for about 3 years: he didn’t want one. As far as he was concerned the tumour was old news, dealt with, history. No this was just ‘a bug’ – maybe somethng wrong with his drainage shunt which relieved the pressure of fluid in his head – and he was waiting to get better. Meanwhile I knew he wasn’t eating much – a great bone of contention between us! – and was most probably lying around on the sofa in his dressing gown, maybe on-line,watching films or playing games. His friends would visit bringing weed for them to smoke as well.

There was not much I could do about any of this as we had installed him in his own house and couldn’t often get past the threshold! He’d been given a terminal diagnosis nearly 5 years before and was convinced he had beaten all the odds: he had a will of steel and was utterly determined to shape his own destiny. So… parents are fairly redundant in most 27 year old young men’s lives! I had gone to Devon and Martin had also gone away – to Nice for a work meeting. We had been getting on with our lives as much as possible and we assumed our son was OK because that’s what he wanted us to think. He was in charge. If he needed anything he could ring or call in the lodgers from our house round the corner.

image-1I had however, bought him a large fluffy toucan puppet from Totnes market to wear on his arm! He may have been 27 but he’d had a love affair with squeaky glove puppets since he was very little…This one made an appropriate rude noise when you pressed it and Iimg_2794 couldn’t resist buying it for the lad – both for old times sake and also because his father has a tattoo of a toucan on his derriere 😉 Little did I know that it would accompany Sam into and out of hospital and be on his bed at home when he died less than 2 weeks later.

So – no advance warning then, as I sat cocooned in the cosy lounge in Devon. Or maybe we’d already had the warning years before but it’s siren had dulled with time and all the camouflaging techniques Sam employed. The truth was we’d lived with anxiety for so long we were like elastic that has lost it’s stretch, so we coped the best we could and dulled it as necessary. Even his little ‘illness’ hadn’t really rung any alarm bells… he’d had episodes like this before. So no, there was no advance warning of what was about to start in 12 hours time.

Now I am giving you advance warning. 2 years on I am going to revisit those 10-11 days and write about what happened. I have told much of Sam’s story over the years, but even in the post I wrote about his death and burial one month later I didn’t go into detail in the way I intend to now.

Why? Why now? Well – I think I need to… I think it will help me go deeper in my grieving than I have been able to go this far. Painful it may be, but I must make room for the buried pain to come out if my heart is ever to be healed. Perhaps this therapy can help me and even some others.

Also as a tribute to Sam. We have never been able to face putting together a celebration of his life – not yet anyway. We had a small informal gathering for some friends and family when he was buried and promised more later – but it has not happened: I can’t face it. Perhaps I can use this time, now the initial 2 year phase of acute grief has been experienced, to pay my respects to a brave man, to remember his humour, his strength and the loving things he said in his last days.

Anyway, that’s the plan – a post every day remembering our roller-coaster journey of 2 years ago. Buckle up!