Thursday 6 July 2023

Day 192 - A memory

 

two men on a bench

During my brother’s illness, I kept a personal record of the events, largely for personal therapy, but also to document incidents like a specialist doctor asking for thousands of pounds for a simple consultation. Or dubious medical trials which would have cost hundreds of thousands of pounds.

I have just re-read one of my last memories of Ad. On the whole, I don’t like to think of how he was in those final days, but this memory was not so bad. It was the last time I was alone with my brother. It was about a month before he died and we had gone down to see him at his rented house. He developed Wernicke’s aphasia at the end, which meant it became difficult to communicate with him. No-one told us that this might happen. When it did, it was only The Brain Tumour Charity website which explained any of it. The conversations, as remarked by one of Ad’s friends became increasingly ‘surreal’…. He thought he was making sense when he talked, but the words came out all mixed up.

 

November 19th 2022

We drove and saw Ad and his girlfriend who is also dying of cancer. She is a writer too.

We shopped for some essentials and when we got there it was clear that Ad’s girlfriend had tidied and made everything as cosy as possible, in the face of the cold austerity and sheer pain of the cancer. She had even managed to get some more comfortable covers onto the hospital bed – the bed which my brother thinks is horrendous and unnecessary. I gave them their gifts which included a good writer’s book, a Celtic pen, a notepad and some personal care items. Ad got a good first aid pack (which he liked), a renewal of his website, a small torch, some quality underwear, some tobacco with papers and a lighter. And food essentials. And a message from us in a bottle which read, ‘We all love you’. Except, because of the aphasia I don’t think he will read it himself.

He was in a relatively good mood, significantly helped by some privately prescribed but legal liquid cannabis he had had to pay for – which had already proved to be very helpful. I’m all for that kind of palliative care. As much pain relief in whatever way possible as far as I’m concerned.

He spoke a lot about ‘crisps’ and I don’t think any of us knew what he was referring to, except we gathered that ‘crisps’ were a good thing.

He looks bigger now, because of the steroids, as he did when he was a boy. His hair shorter again. But still the fierce intelligence in the eyes. He has weeks, that’s all I know. He is half aware of some of it at times, but then at other times thinks he has longer, because he feels okay. But he cannot manage hills now. He can still walk a little.

We sat on a bench in a graveyard to watch the sunset and talked about nature and some other things. We looked down together across the valley where he lived, still beautiful even at this time of the year. The sunset was really quite peaceful until a neighbour decided to mess with some plants nearby at the point when we might have been alone. I wished the neighbour wasn’t there. Someone else waved at us from a distance. They walked all the way over to us and stared at me.

“I thought you were someone else,” said one of them, as if I had somehow deceived them and was to blame. They walked on.

The sun began to set and I tried to listen and speak with my brother. Some of the conversion seemed to make sense to him. Some of it made sense to me. In the end he raised his walking stick to the sun and asked God for some more years. I guess he has reached bargaining stage.

Afterwards we left the bench and the graveyard and met up with the others. Then it was as if there were a change, a shift somehow, and my brother said:

“Where is my brother, Nick? Where is she?”

I, startled, replied, “She sends her love.”


I don’t want to read more of these notes I have – I’m not sure there is much that is particularly helpful there. They document my feelings and how difficult so much of the search for medical trials was. I’m not sure there is anything especially helpful in them. It was just that this was one of the final times that I saw him, before hospital, and, in a way, I wanted to remember that again. They are both gone now, my brother and his girlfriend – both from cancer.

I cannot currently foresee a time when we will not so intensely miss them both.


2 comments:

  1. Thank you for this Nick. The pain doesn’t lessen. Xxx

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  2. Moving, painful and so intimate. Thank you for sharing, Nick. These moments can be precious but sometimes just damn too painful to bear. Xxx

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