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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The turning of the year

Yesterday I was full of words but there was no opportunity to express them. Today I am making time, but it is possible they will not come out from hiding. It is painful to live on the cusp of ‘almost but not quite’. There is always risk in artistic expression. When I tried my hand at watercolour painting this summer beginner’s luck gave me a great start (see previous post!) but I soon found my efforts did not really produce anything to write home about – as it were. I became disappointed and stopped wanting to paint.

When will I make the time to try again? There is so much to overcome when we attempt to express something that is hidden inside us… lethargy, fear, distractions. However, on the plus side, my dabble in visual art has re-ignited my first love of photography – I suppose because with photos you only have to capture a picture not create it! My camera has been well-used again this summer and the photo-blog is back on course. There is a lot of enjoyment and creative satisfaction in that – as well as a healthy focus on beauty and light 🙂

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Yes, it’s been a beautiful summer, extending right into mid-September. Yesterday – the Ides, the midpoint – was our first full day back to reality in the city that is nearer to Space than the sea. It was a culture shock to return from Finisterre (literally the ends of the earth) and is taking time to adjust. My headful of buzzing thoughts spanned memories of holiday heat and awareness of a new chill in the morning air. In the midst of the necessities of laundry and housework – get a haircut, cut the grass – a resistance to just returning to business as usual. Decisions to be made for the new season – French classes and various family plans -I even booked our Christmas hotel! How will the next few months look? How far have I come? A doctor’s appointment to review the same things – a healthy way forward. In all the shops the ‘Back to School’ displays provoke sadness at all that has passed and a loneliness at the fresh wave of young people forging forward while we grow older. The 2nd anniversary of Sam’s death approaches, the short, dark days, another marker in our journey.

And yet… I do feel hopeful. September has this effect. It’s the start of a new year, new opportunities – renewed energy after the lazy days. This morning we even welcomed the refreshing rain and last night the strangeness of putting lights on against the early gloom – the cosiness of home. The equinox will soon be here and then October – yet they are welcome because we are sated with summer. There will be time to look back at all those photos and enjoy it all again, but a new wardrobe to wear.

The last 6 months has been very hard for me: I have been so low. But the drugs are working well now, keeping me on an even keel. I am learning to be kind to myself and set good boundaries. If you put one foot in front of the other eventually you get somewhere new. On Monday I will meet my new counsellor and try out a new choir. I might pick up a paintbrush again. I will have lunch with my friend. And of course there’s the ironing… and planting bulbs for the Spring.  It’s always good to welcome the dawn, even when the clouds hide the sun.

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