August 2006

30 July 2006:
Progress Report

Dear everybody,

I've been having real problems summoning the mental and physical energy to write. Eventually I decided to ask Sarah to kick off a progress report for me and here's what she says:


Jos is sleeping much more and seeing less people and life is pretty relaxed at the moment. Not to mention, the weather manages to quash most ideas of productivity straight away! Walks seem to have got later on, enjoying the cooler evening temperatures and still having rests on the top of hills, watching the butterflies overhead is very relaxing and peaceful.

The Hathersage residents have just been given a very special treat: the combination number to open the gate of the mighty Brookfield Manor. Until about three years ago villagers went unchallenged when they walked up the drive through the beautiful parkland, but then up went the gates. Jos has been campaigning for renewed access since then as it is perfect for pushchairs, wheelchairs, toddlers learning to bike and of course convalescents, elderly and infirm strolling up the drive. Finally the parish council has dropped its pigheadedness about going through years of legal proceedings for a right of way - which was likely to fail in any case - and have agreed concessionary access for villagers with the owner - Captain of Industry Sir Hugh Sykes. So, Jos and I take a triumphant evening amble up there most days. It really is very grand, with wonderful old trees and Stanage as a spectacular backdrop.

The garden is just coming into its own, with beans, tomotoes, salad, peas, etc. all appearing in abundance. There's nothing nicer then relaxing in the garden with a good book and a freshly picked salad!


So now it's Jos valiantly carrying on: I'm very pleased to have been alive and kicking for this month's Mediterranean weather - I just love it even though I can't spend too long in the full force of it. But summer sounds and smells and breezes drifting into my bedroom feels almost as good as being right out there.

I've been feeling a lot less depressed than when I wrote my last progress report. This being mainly due to unexpected elimination of dyspepsia which had become so extreme and was present so much of the time, that my enjoyment of life was being seriously compromised by it. It got so bad that I decided to call the doctor out in the middle of a particularly vicious attack, at which point it was recommended that I should stop taking Diclofenac, an anti-inflammatory which it's commonplace to prescribe along with opiates to minimise the pain of a tumour, and which I'd been on for over a year. Because it's notorious for its peptic side-effects, one is always prescribed another drug alongside - a "proton pump inhibitor" - specifically to counter the risk of stomach ulcers etc. Very trustingly, I hadn't considered the possibility that this "proton pump inhibitor" might not be doing its job.

When I stopped taking the Diclofenac, the attacks of dyspepsia immediately ceased and I immediately stopped feeling that I wanted to be dead as soon as possible. But regaining a comfortable stomach has come at the cost of pain levels increasing significantly - the Diclofenac had been very effective in terms of pain limitation. The Sativex spray (my cannabis on prescription) is definitely helpful in countering the extra pain, but not to the extent of its effects being miraculous - I've had to up my morphine dose significantly as well. (Although the docs are still saying the dose I'm taking is remarkably low.)

Writing about this kind of stuff is so completely boring! But in any case, I am struggling to find the energy to write about anything - or to communicate very meaningfully in any other way. On top of the energy issue physical pain sets in much faster than it used to, whether I type or write by hand or talk. It's really much easier to be relaxed and comfortable if I'm not attempting to communicate at all - reading books in the bath and in the garden, listening to music during my rests, communing only with nature while walking etc. I often think that, being somebody who gets things done by setting myself deadlines and targets and given that I was told at diagnosis that I must expect to be dead in a year, I did all the thinking that I needed to do in that year. My mind is now clear and empty most of the time - I'm not in the least beset with niggles and anxieties, although that doesn't mean I don't get interludes of tearful anguish. I don't have any doubt that it's the mindfulness of breathing techniques I've developed which have made it possible to clear my mind like this. A plane or two below true enlightenment I'm sure but perhaps the most that such a flawed being as myself can manage.

That's really all I can write,

Lots of love, Jos and Sarah


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