Gone upstairs

a personal journey through grief and change

On the ward

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It was a gruelling night.  Sam needed nursing care – he was incontinent, unable to get out of bed alone, not fully ‘with us’. At some point he was wheeled off for his scan. At 2am Martin’s brother and father arrived: they had collected Becca at a train station en route She’d been having a ‘2 months together’ celebration with her boyfriend, Tom – which was why she’d wanted to go home. In need of support, she invited him to come along too. Brave man – he’d never met any of us before! But he was willing to come into this traumatic situation to support her, as he continued to do in the following months. We are eternally grateful.

In the early hours of Tuesday 18th November there was a moving family reunion in the dimly-lit corner of the 6-bedded ward as we all tried to keep our voices down around his bed: Sam and his fellow patients were asleep. Martin and I were exhausted and very glad the cavalry had arrived. We were able to take Martin’s dad back to our flat – only 10 minutes walk away – and all go to bed, while Richard, Becca and Tom took over at the bedside…

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Obviously there had also been some medical intervention since Sam’s admission – drugs for pain and sickness and also the first-line treatment for raised intra-cranial pressure, the steroid Dexamethazone. This drug reduces the inflammation and consequently the pressure and its symptoms and it undoubtedly helped cause the improvement that followed. By morning Sam was back to his almost-normal conscious self. We returned to the ward at around 7am and found Tom and Becca sleeping on chairs in the dayroom and sent them to our flat for a proper rest. Richard was by Sam’s bed and soon decided that as the crisis was past he and Dad would drive home. Later on, Becca put Tom on a train back to Brighton… and then there were 3.

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imagine the goose as the consultant – having a good telling off!

During the morning there was a ward round. A young consultant came to talk to Sam about what they had found and what they could offer. Oh boy – that poor doctor, having no knowledge of our son’s history and approach, got the full force of Samuel! “The CT scan shows the tumour has grown and there is mid-line shift (ie it was pushing into the left side of his brain). We could get an MRI with more detail and send you to the surgeons in Nottingham to see if they can do anything. We could give you some chemotherapy…?” “I have dealt with this in my own way up until now and nothing has changed. I don’t want you to do anything, I want to go home and continue to do it my way!”  With words to that effect Sam effectively dismissed the medics and took back control of what was happening to him – at least as much as he physically could.

The previous evening we had texted a number of our friends and Sam’s friends to let them know about him, so soon after that Dean, Sam’s energy-healer friend, came to visit. I’m sure this meant a lot to Sam – he was very reliant on Dean’s advice. We were also delighted when his old school-friend James came in. It was in fact the beginning of a number of reconnections with people who’d known him in recent years which was so important and helpful over the coming days. And of course his img_2783sister had long hoped for this opportunity to support her brother when he needed it…

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The day now stretched ahead and there was a lot to organise. Martin took over, making contact with the acute oncology team who could make the arrangements for Sam to be cared for at home – including night nurses, a hospital bed and other nursing care in due course. I drove back to Loughborough to get his house ready…
img_1203I worked hard cleaning and moving furniture around, putting the sofa in the kitchen so that there would be room for the hospital bed when it was delivered. I tried to position his personal things where he could get at them – music and a bedside table, chairs for visitors. I tried not to think that I was preparing a place for him to die in peace: we had no idea what that would entail or how long it would take…  But this is the status I posted at the end of the day – facebook found it for me this morning, 2 years on. Look at that, 140 comments… so much support from dear friends and barely known acquaintances. It meant so much. We knew we were surrounded by many prayers and felt the grace carrying us. Later on it was astonishing to be thanked for allowing others to walk the journey with us by being so open and sharing it as it unfolded. It continues to be a privilege and even helps to somehow give it all meaning. Thank you for reading now…

Meanwhile Martin sat with Sam. Martin still remembers with immense gratitude one of his consultant colleagues coming onto the ward to bring him coffee, mints and encouragement. He witnessed Sam try to walk to the toilet and fall. The hardest thing for him as a doctor was being unable to do anything to help, to make him better – because no-one could do anything. He recalls lying on the bed with him, crying over our son, his tears falling on Sam’s face – and Sam looking at him and saying, “Why are you crying Dad? You haven’t seen what I’ve seen…” We don’t really know what he meant or what he thought was going to happen: he continued to insist the tumour was irrelevant, but it seemed that at the same time he knew he was dying and was completely unafraid.

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He was moved into a side-room for his second night in hospital, which gave a bit more space and privacy. It also declared that he was no longer an emergency to be watched over – clearly the steroids and other drugs were having an effect. Becca took over the nightshift and laid out her own bed on the floor next to him and we returned to our nearby flat – so grateful for our Leicester home ‘for such a time as this’! – to rest and wait for what tomorrow would bring…

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Author: Sally Ann

True-story teller - words and pictures

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