November 2006

Progress report 28.11.06

Dear everybody,

I've finally got round to putting a brief update on my ongoing decline onto my website, which is pasted below. If I rally round at any point in the next week or so I'll write again with further highlights of the month! Interesting how all you need to do to make yourself sound relatively cheerful is to add an exclamation mark to a sentence...

News summary 11.11.06:
Have rallied round a bit over the past couple of weeks and am able to walk a mile or so almost every day in the beautiful autumnal sunshine.
News summary 28.11.06:
Still in the land of the living, or at any rate in a twilight zombie state. Some days (most days?) it's impossible to walk more than a few yards down the lane, if that. But on Sunday - just a couple of days ago - the autumn sunshine drew me onwards and upwards, and I managed to loop round through the grounds of Brookfield Manor and up to the churchyard. Well over a mile and felt like a considerable achievement.
It's surprising how strong the drive is to carry on living despite being exhausted beyond the capacity of words to describe. I don't think this would be the case if I was in great pain, but I'm not.

So there we are, at a superficial level that's how it is at this point in time. Pain could very conceivably become a real issue, particularly resulting from the "vena cava syndrome", "inferior" as well as "superior" - "inferior" is what results from pressure of the mass on blood supply to and from lower part of my body. If this happens I'm not going to rule out the possibility of radiotherapy, but I *am* ruling out drugs that make one feel hyper such as steroids - even if I can sleep very little, at least I feel tolerably relaxed for substantial parts of the time. Provided that I keep right away from any sources of stress, although this often seems a selfish thing in the extreme to do.

I really do still enjoy reading people's communications so please keep them flowing - even though as a general rule it's inconceivable that I should find the energy to reply. It does get increasingly difficult a lot of the time to sit at the computer and read, but when that's a problem it's easy enough to get somebody else to print out emails for me. Which provides an opportunity to have excessively large dollops of emotion edited out by my children at the same time as printing out! From my perspective, emotion gives rise to stress and stress gives rise to pain.

I'm still managing to read books, and am currently enjoying autobiographical things written in the first part of this century by inhabitants of the Great Blasket Islands, at the end of the Dingle Peninsula. There was a remarkably strong Irish language literary tradition. Dingle is one of my favourite places in the world. The islands were finally deserted in the 1950s, but the peninsula remains full of life. I find it gives me solace that people could live such hard lives and yet remain endlessly humorous. I can't get comfortable reading in the bath any more (or lying in the bath in general), but I read quite a bit in the middle of the night between the short stretches of sleep which I'm limited to - not normally more than 1.5 hrs, then I do wake up from pains, in the neck. My best sleeping time is between 7 and 11 in the morning - I like the daylight to accompany my snoozes.

Lots of love, Jos


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