Health bulletin

Posted May 17th, 2009 by Jane

I know that several of you were worried after the shutters closing post, particularly as I didn’t post again for a while.

Like many others with cancer I have an ambivalent relationship with those ‘how are you’ questions. And then I can be a difficult and prickly kind of person too.

Its a real dilemma…you want people to ask how you are, but then sometimes its too dreary, too wearisome, just too much to recount the blow by blow stuff which in any case is never static.

I think part of the difficulty is that I live with the ever changing detail and any health bulletin is always a snapshot only true in that moment. Things move on and change…one step forwards, two backwards much of the time.

Always as a constant is the horrible uncertainty. Where will it spread next? This is a constant that never goes away. I was frightened and miserable when the pain was at its worst and so fearful that somehow I was already on the down and down bit of the rollercoaster which will end with my death. I think among breast cancer patients there is a particular fear of spread to the brain. It certainly haunts grandmother and a second cousin both died of brain tumours and I often wonder whether it was actually secondary breast cancer. The drugs make me feel slightly drunk and woozy…3.00am musings and tears and you can guess the dark fantasy.

I have several large lumpy tumours, visible in my shoulder and neck..they are pressing on nerves and causing shooting pain around my back, shoulder and arm. My arm is getting increasingly weaker..I can’t lift it easily. For a couple of weeks after Easter I couldn’t walk more than 20 yards without the pain being pretty bad. I felt housebound. . and R. and I put a planned city break on hold while the palliative doctors and nurses twiddled around with drug dosages.

I”m now on a cocktail of morphine, amytrptline and steroids plus experimenting with some new and vastly expensive pain relief patches designed for people with shingles, but now being touted round the hospices. It is still diffciult to walk far but the pain is nowhere near as bad…I feel less frightened by it than I did.

Mind you I’ve been throwing tantrums at my long suffering hospice nurse about how their difficulty in treating this pain doesn’t exactly instill confidence in the promises made of pain control during end stage disease.

And now, never a fit person, because I am walking so much less, I feel the whole of my body getting weaker. I have started to find it hard to get out of a chair, or the bath. I bent down to get something out of the cupboard under the sink yesterday and had to crawl along the floor to lift myself up…not promising.

My oncologist retired at the point when I stopped chemotherapy and I’m seeing her successor in a couple of weeks. I kind of want to ‘touch base’ with another oncologist. Its strange…I know what the options and non options are but there’s still that tiny voice which says: “There must be something, there must be something”. The palliative care team think I might be able to have some radiotherapy though this has hitherto been ruled out..we shall see.

Meanwhile R. and I are flying off to the sun for a few days.