Occasionally I am very ill and no-one knows why. This is always a surprise to me because I am convinced it's the ca making itself known, but it's always the last thing the professionals agree on.
On one of these occasions I had to stay in the hospice as an In Patient. The ratio of trained nurse to patients is one each unlike the poor old NHS where there can be one trained nurse to 30+ patients. There care there was exemplary, the bed was so comfortable and the sheets made of fine pressed cotton so delicious I almost felt like staying, even the food was good! I'm sure it's a fine place to die.
In fact I watched my friend H die there this year. She had the same ca as me and her gut was blocked by the ca becoming so large in her abdomen in stopped it working. When that happens there's generally nothing that can be done and I watch my dear friend take six weeks to starve to death. In the first two, she was very keen to impress on me that not eating wasn't a problem and I shouldn't worry about it when my time came, but the last four saw her change into a non recognisable skeleton living on fresh air and morphine. I can't remove that image from my head, I can't remember how she looked before, it's all I see and all I remember.
So after my stay there and seeing H die there I don't want to go there at the end. I want to be here in my own bed in my own house with my girls, my dogs and cats and with my ponies close by*.
I don't want them to bring in a hospital bed which they say I have to have if I want to die here (something to do with raising you up and down) they'd never get it up my stairs anyway and I'm certainly not having it in my living room! The palliative care team say that getting controlled drugs to a rural setting is too difficult, but I wonder why? I told my oncologist and she said make a decision when you're at that point which is far too sensible, but probably good advice. However, she wasn't so pleased that when I was in the hospice, feeling like death, they asked me to sign a DNR form which I did. She told me to rip it up. I haven't but I've put it somewhere so safe I've forgotten where it is. There's nothing wrong with my heart so it probably won't stop of it's own accord anyway.
So that decision made, I'm also awaiting an appointment for the Royal Marsden. They run lots of trials and If I'm lucky I may get on one that doesn't kill me in the first five minutes and isn't the placebo. Meanwhile I am lucky enough that my NHS area allows Avastin to be administered. It's a shockingly expensive drug (inflated by BigPharma, it's cheap to make) that wasn't available to me when I was first diagnosed (and where it would have been the most help), but was available to be on recurrence. I have that every 3 weeks as long as I'm not ill. I had a seven week break just now but had the treatment last Thursday. And do you know what? I feel fine. No really I do. I don't feel ill, nothing hurts too much, I'm getting fitter again. The Avastin is supposed to stop new blood vessels growing and can work for up to a year. It's a bizarre roundabout because my blood markers are shooting up which means the ca is growing and spreading but it must be doing it somewhere where it's not too uncomfortable at the moment. I'll have to have a scan before I head to the RM which will show the bad news but I have come to believe, eventually, that they really can't cure me so I'm prepared to live with it. It's compromise because I'm not going to die of it, I'm simply not brave enough. When I've had enough I'm going to go to sleep in my own bed and just not wake e up.
* forgot the tortoise!
H and me
