September 2006

12 September 2006:
Progress Report


Dear everybody,

I'm getting a bit snowed under with emails asking how I am and so feel the time has come for another progress report... in a nutshell, gradual decline continues and energy is very low, but I'm reasonably comfortable notwithstanding.

The days roll gently by, and mostly I manage to be quite successful in keeping stress/distress at bay. Pain continues to be fairly well managed - very closely related to maintaining a state which is as near as possible to stress-free. Completely abandoning cooked meals has proved very successful and I'm maintaining a healthy diet, avoiding nausea, and keeping up my weight, by sticking to "grazing". The main problem for the past few weeks has been that my temperature is unstable. At night I have big sweats to contend with. In the day I have to be very careful not to try to do things - whether walking, talking, going on computer or being active in any other way - unless/until my temperature has come down reasonably close to normal. This can be quite boring some days when it stays up well over 100 till late in the afternoon. Soluble paracetemol is what the doctor ordered, and has become one of my favourite drinks!

The major change in my highly uneventful life has been that I've switched from quarterly check-ups with the oncologist at the hospital, to monthly visits to the hospice to see the palliative care consultant. This was first suggested by the docs a while ago, but I felt some resistance initially. Moving my care to a hospice base seemed rather a daunting shift into a kind of twilight world which I hadn't anticipated would be part of my experience of cancer. The block was because given how bleak my prognosis was, I simply couldn't see how I was going to fit in the time for a stage of (relatively) slow decline. I think it developed into a kind of wishful thinking, a survival technique, to hold on to the assumption that my end would be swift when it came.

Having realised eventually that I needed to address this issue, agreeing to shift to the hospice-based palliative care consultant was obviously the logical thing to do. Even though the cancer has grown considerably slower than predicted, that doesn't alter the fact that it's an untreatable growth. The docs are very definite that they don't want me to have any more chemotherapy - it didn't have sufficient impact the first time round to be worth repeating, especially since a second bout would take much more out of me than the first one did. As far as radiotherapy goes, it's sometimes used in cases like mine for purely palliative reasons - "to help with the congestion" as the oncologists put it, without any expectation of increasing life expectancy. Anyway, in my case they don't seem to have any confidence that it would actually improve my quality of life, and to me it seems far too much of an ordeal to go through for the sake of mere possibility.

So, when it comes down to it the only real reason to carry on going to the hospital would have been for the sake of regular x-rays to monitor the size of the mass. But given that its size is already life-threatening, this doesn't really provide any useful indicators of life expectancy. It makes complete sense to me on reflection that the docs have done their best to discourage me from obsessing about "how long have I got?" Especially with cases like mine which don't follow typical patterns, there's no way they can supply more than the wildest guesswork at this stage. Although they have stuck very firmly to the pessimistic end of the scale, I have to say!! I think the tumour is just too large already to seriously allow for the possibility that I might be one of those who end up living for years and years. Which suits me fine. Life is still quite bearable most of the time, but I can imagine it getting tedious if it dragged on too long. However such thoughts seem pretty pointless, and as the professionals continually say, it's best to just go with what each day brings. At the moment I still have quite a bit of faith that the pain can be kept under control with opiates etc. (etc. = meditation, breathing techniques, Sativex...)

August was relentlessly dismal on the weather front. It's too much of an uphill climb for me now to get from my house up onto the tops without some substantial rest periods en route. I really wanted to get out into the heather while the wonderful honey smell was at its peak, but while the heather was at its best there just wasn't a warm, settled day when we could do this. Twice I braved the discomfort of car rides to get to heathery places, but then found the wind on the tops blowing too hard for me to walk and mission had to be abandoned. But I did manage to stop off with Ian on the way back from my first hospice appointment. It's rather satisfactory that this Ashgate Hospice is at Old Brompton, which is our side of Chesterfield without needing to hit any urbanisation at all en route. And the whole journey can be done on the ancient trade route which is a lovely road dropping right over Curbar Edge/Baslow Edge. So, we stopped off at the top there and got a brief but brilliant heathery walk on Curbar Edge, which has some of the most fantastic views in the Peak District.

It's quite possible that I'll never actually get to stay in the hospice, although it's very pleasant - all single rooms with doors onto the garden etc. But as a general rule these days they encourage home deaths - if that's what you want to do. A decision which we'll make pragmatically, depending on how things are at the end. Apart from one's actual demise, the two other main reasons for a hospice stay are a) if pain has got out of control and a new drug regime needs to be implemented; or b) because carers need a break. I think that as a general rule the average hospice stay lasts just a matter of days rather than weeks or months.

On a more cheerful note, we've had some brilliant sunny days during the past week. Now that my capacity to walk uphill is very restricted, it's most welcome that from Hathersage, the hourly Sheffield bus climbs dramatically out of the Hope Valley up to Surprise View, where the vista is truly spectacular. I've managed to overcome my sense that it's cheating to let the bus do the hard walk and then walk back down into the valley - there's a splendid network of footpaths coming down from the tops over Millstone Edge and into Hathersage. And some idyllic snoozes in the sunshine have been had en route.

Visits are generally too much for me apart from the children of course and a handful of old friends whose life-philosophies are so close to mine that I know I can rely on them completely not to go into sentimental mode. This being the thing which I dread above all else... But I do still very much enjoy emails, letters etc provided that they stick to this rule! I have also commented to a few people that I feel daunted by receiving emails which are liberally scattered with questions, but I've been thinking recently that it could be interesting to collate a set of "terminal faqs" for my web pages. So, if there are questions which you always feel you want to ask people you encounter who are facing death, then please send them and I'll see whether it stimulates enough mental energy to get me composing some answers.

I'll stop now. Please don't forget my bmycharity web page - - and consider making a donation to Medical Aid for Palestinians. It's in my mind a lot of the time, how unlikely it is that I would be able to get any joy at all out of life if I was facing this illness as a Palestinian woman.