June/July 2006

14 June 2006:
Progress Report


Dear everybody,

The weather has finally broken after a week of constant sunshine, which has been delightful. Have had some excellent walks and rests on sunny banks. It's getting harder all the time though as weariness steadily increases. I'm not able to write anything substantial any more - I nearly said "at the moment", but I honestly think it will be surprising if this capability returns. It's just too uncomfortable, the sitting and keying-in or handwriting. And talking is much too tiring for voice recording instead of writing to be a possible option. And my mental energy is too low to want to do very much in the way of communicating anyway...

Which is all surprisingly OK as long as I can just accept for myself that this is how it is - and as long as I don't get grief from other people being wounded that I'm not sustaining meaningful dialogues with them! I find it quite logical, and helpful, to think of myself as winding down gradually, slowly receding further into my shell. My daily routine still provides the same structure for my life, but everything that happens within it becomes increasingly slow-motion and more limited.

My appetite has got quite precarious and in order to get enough food down me I have adopted anti-social eating habits, eating very slowly indeed and reading a book while I do so. I spend twice as long as I used to after breakfast doing my "morning mile" across the fields to Leadmill Bridge. A combination of walking much more slowly, and spending longer leaning against my oak tree friend gazing at Highlow before turning round to come back. Hanging the washing on the line and popping out to the shops are now the peaks of achievement in the morning before I go for my rest! During my rest times, I used to do a lot of thinking but now I hardly do any at all. Just be mindful of my breathing, listen to very quiet music (currently some lovely 1950s Amadeus String Quartet Mozart recordings in a 5-CD box set - highly recommended), and enjoy sleeping.

I'm not going to try to write much more - I've had three or four attempts to do so now and been deterred every time by pain setting in pretty much as soon as I start typing. Probably not unrelated to the fact that I just don't have anything I feel particularly impelled to write about! There is a slightly interesting piece of news, namely that I am now being given cannabis on prescription, in the form of a spray called Sativex which you spray onto the inside of your cheek. This is all very pioneering on the part of the Palliative Care consultant - the Home Office only gave the go-ahead a few weeks ago for doctors to prescribe it to terminal cancer patients, and then only if the local PCT is agreeable. It's not fully licensed yet. Anyway I'll give it a bit of time playing around with dosage etc before I say any more about how efficacious I think it is.

You can see from the attached photo, taken the week before last, that my appearance continues to give a completely misleading impression of physical fitness. For that reason I hesitate about sending it. It gets tiring and upsetting fielding comments - which I get quite a lot in response to how I look - about how the doctors must have got it all wrong etc. Unfortunately, how I actually feel makes me only too sure that the doctors have got it right. I made Sarah take the photo about 10 times before she got one I liked! But it does reflect at least some reality despite being posed in that sense - the times when I feel in positive spirits, ranging from intensely happy to tolerably contented, still far outweigh the times when I feel sorry for myself.

n.b. curly hair entirely due to chemo - haven't done a thing with it...

And now it's off for my afternoon walk.

Lots of love,

Jos

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18 June 2006

An old friend has just been diagnosed with breast cancer - the second old friend who this has happened to since I was diagnosed. It seems to be getting almost as much of a normal medical event for women as having a hysterectomy. I do get some jealous pangs towards people whose cancers are treatable. On the other hand, at least if you're untreatable you don't have to be subjected to treatment. In particular I'm very glad not to have been put through Operations of any kind.

Constrain'd not only to indure
Diseases, but, what's worse, The Cure;
And ready oft the Port to gain,
Am Shipwrackt into Health again.
(Andrew Marvell (1621-78), Dialogue between Soul and Body)

18 September 2006

I still haven't got round to editing my mailbox into diary format from June onwards. On top of which there's much less raw material in my mailbox than there has been for previous months. This reflects my increasing lack of mental energy, and increasing discomfort from sitting at the computer.

I've decided I've got to abandon producing my diary in this format. I'm determined to carry on producing monthly progress reports (although I failed to do this for July). Perhaps I'll supplement these with other thoughts if I can summon the mental and physical resources - we shall see!

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