One of the interesting things about the leukaemia treatment is that each of us on the day ward, even if we are on exactly the same treatment regime, reacts in a very individual way to the drugs. So I thought I would tell you a bit more about the neuropathy and what it does to me. I hope you find it interesting.
The drug that causes the neuropathy is vincristine, of which I have had 2g in one dose on days 1,8,15 and 22 of the last month's treatment. So right now as I type the top two joints of my fingers are cold, numb and tingly. The skin on the ends of my fingers is sore and cracked, which makes typing quite slow. I am super-sensitive to heat through my fingers too - can't take the toast out of the toaster because I burn myself. Dexterity is much reduced, so doing buttons or picking up pins is very hard. My feet are cold from the toes to under the ball of the foot (read frozen). Again the skin on the ends of the toes is very sensitive, so stubbing my toe on things is best avoided unless I really want to find myself in orbit. Vincristine also causes joint pain and affects the nerves in the bowel (joy).
Overnight I managed to sleep for about two hours to 12:15. I then needed the bathroom and after that had to get up for a bit. The drug effect on the bowel for me is that it becomes very uncomfortable to lie down because my digestion thinks it is daytime and is working away. So I get up for between 1 and 2 hours until things sort themselves out at which point I can go back to bed. So I was back in bed at 03:15, slept until 04:30 and then woke up. My fingers and toes were cold and throbbing and I had joint pains in my right ankle and right hip and also in my biceps and shoulders which stopped me going back to sleep but I made myself lie there until 05:45 before getting up.
When I first get up I am very stiff-legged and lurch from foot to foot for a few minutes before things get moving. My feet don't bend very well at the moment so I have to hold the banisters going downstairs. Thankfully we have grab rails in the shower and outside the front door from when my mother came to live with us after her stroke. I am finding them quite useful at the moment.
I am going to a wedding in Oxford on Saturday. I may have to wear trainers as they support my stiff feet better than any other shoes. I will also need to take my walking poles - tomorrow's job is to decorate them with navy and green ribbon to match my hat!
I am also suffering from the after-effects of the steroids. They did their job during the treatment in protecting me from the chemo, but now they produce their own side-effects as they work theirway out of my system. They make me retain water so that my ankles, calves and lower thighs swell and get tight, making walking tricky. They also cause skin sensitivity.
This is not meant to be a whinge, just an indication of what the neuropathy means. One of my fellow sufferers has had this sort of neuropathy and had talked about it, so when it came on suddenly on Saturday at least I knew what it was. It is totally manageable - the ward doctor checked me very thoroughly on Tuesday and agreed that I was doing everything I could. They could give me painkillers or other drugs to counteract the effects but a. they don't always work and b. I am temperamentally disinclined to take yet more drugs if I don't need to. Thankfully the doctor agreed with me!
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