January 2007

3 January 2007:
Progress report

Dear everybody,

Here I am still alive and kicking. The afternoon of New Years Day and most of Jan 2nd it's been dark and wet, as has been horribly normal over the past month. But very pleased I was that the morning of 1st Jan 2007 was light and sunny, and that I succeeded in walking across the fields to the oak tree by Leadmill Bridge. I try not to let myself think how irrational it is that a mile's walk has now come to appear as a very major achievement. Even when there has been sun in the morning, before now I haven't managed to sleep enough in the course of the night to take advantage of it and get out, so that's another reason for being pleased that New Year's Day was different in that respect.

It was notable that most people who emailed me since my last progress report (10th Dec, which was when I went into St Luke's hospice in Sheffield) seemed to be anticipating that I was unlikely to come out again - perhaps I was inadvertently implanting that assumption myself in my friends and family... As it was, I came out on 18th Dec and have been at home since then - hence proving that hospice stays really do not exist just for dying. In this case my stay fell into the category of being one of those where the aim is to settle the patient into a different medication regime. As far as I was concerned, this was about trying to get me feeling less lacking in energy and also less at risk of going loopy - 18 months is a long time to be on opiates for, and it's common in cases like mine where you're "terminal" for much longer than is expected, for problems to set in as a result. It's interesting to speculate whether I would have been more resolute in resisting the pressures from the medical profession to escalate to opiates 6 months after diagnosis, if I'd had any reason to think that my prognosis would deviate from doctor's expectations to the extent that has turned out to be the case. But I haven't reached any conclusions on that one and quite probably would never be able to.

Anyway, back to the situation which led to my stay in the hospice before Christmas... Initially the main thought of the doctors had been that a blood transfusion would be needed to bring about anything much in the way of restoring energy, but after assessment they decided to confine themselves at that point to switching my medication from morphine sulphate to a different opiate - the one they decided on is fentanyl, delivered by means of a skin patch which works the same way as a nicotine patch and is changed every 3 days. One can't pretend that it's any less noxious a drug than morphine, but after 3 weeks things do seem to have settled so that the pain is under control at a dosage level which - for the time being, and that's all one can expect - is leaving me with slightly more energy, and less of a sense of loopiness, than was the case with the morphine sulphate.

I think these two factors are connected to one another via my night-time sleeping pattern. It had reached the point on morphine sulphate where this was so badly disturbed that the sleeping pills (Zopiclone) which had worked a treat since diagnosis had come to impede rather than assist sleep. And on top of that, whether or not I took a sleeping pill, I was scarcely letting myself go to sleep at all at night because of the hallucinating-type thoughts which were so often intruding as a result of the morphine as soon as I dropped off, and which made me jump out of bed to prevent them developing into anything worse than a passing jitter.

Due to being restricted to only one possible sleeping position, I'm still not able to sleep at night for more than 1-2 hours at a stretch without needing to get up and move around before I can settle myself comfortably again. But at least over the past few days I've been finding that I'm usually sleeping fairly soundly in those short chunks, and as a result I'm not facing exhaustion relentlessly every morning.

Apart from these extreme problems with fatigue, another way in which I would describe how I feel peculiar is that I have a sense of being poisoned. Which of course is the reality... a combination and interaction of being poisoned by whatever caused the cancer; poisoned by the cancer itself; and poisoned by the drugs one is given to treat the cancer and to make the pain and bodily sensations bearable. It's not surprising that this combination of effects accumulate and worsens over the months and years, but the ways in which this happens can be very disconcerting. Since very soon after I was diagnosed my tongue has been oddly sensitive - stinging, going dry and feeling as if it's swelling up when I eat even slightly spicy food, or clean my teeth (even with flouride-free health food toothpaste).

Over the past few weeks this kind of symptom has reached extreme proportions, most especially in relation to perfumes. I can't sit in the same room as highly perfumed hothouse flowers for more than a few seconds before it sets off. Over new year there was one day when, as soon as I went to bed and put my head on the pillow, I went straight into a state of what I feel very inclined to describe as toxic shock, and leapt straight up again as a result - mouth went dry very suddenly and dramatically, eyes went puffy, thought I was going to collapse. My sheets had just been changed and the fresh ones had been washed in washing powder from a newly opened box - a brand we'd used before and non-bio, but "new formula" and presumably they had changed one of the industrial perfumes they put in it. Under trade secrets legislation I gather they don't have to declare the exact names of these, the box can just state "perfume".

There are countless more examples of this sense of being poisoned - I have to say it very often feels like madness but somehow there doesn't seem a great either/or madness/sanity divide. I feel a strong sense of kindred with the poisoned Russian. It's perhaps a bit quirky trying to write about this. Perhaps it's the case that bronchogenic cancers of any kind, where I suppose one might be described as dying through suffocating more or less slowly, are commonly accompanied by such sensations rather than being dominated by more conventional "hard" pain... and on that cheerful note I will end this email. I felt unsure as to whether it was in good taste to write it, and it's taken a few sittings to get it done, but I'm pleased now that I've succeeded in getting it into words. It's made me feel definitely stronger and saner and less at the mercy of dark forces.

Lots of love, Jos


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