I have been lying awake nights trying to go to sleep, but not wanting to face the nightmares. When I wake up, shattered, I have had hands and feet so stiff that I couldn't pull the quilt back and walk to the bathroom. I know it's been warm but I have never - NEVER - spent the night with no covers over me before - the fear of spiders walking over me in the night (yeah, ok, don't tell me whether it's silly or perfectly reasonable, I don't want to know) has always kept me under the quilt, whatever the weather. Until this month. Hot flushes four hours long. Changing the sheets every few days because they are wringing wet by morning.
I don't know what made me look at the "Patient Information Leaflet" in the latest hormone therapy tablets I have been taking. Possibly the thought that these haven't been any better than the last. I was taking anastrazole (Arimidex), which was making the pain in my joints (which is a natural part of being post-menopausal, or so they tell me) much worse. So I spoke to the Great Man, or rather to the BC nurses at the clinic who spoke on my behalf to the Great Man... he wrote to my GP saying that I should stop the Anastrazole and start on Exemestane, which might or might not reduce this particular side effect. I didn't start them straight away but waited until I got back from a business trip, but I have been on them for almost a month. Anyway, my poor claws have been getting more and more painful, so I thought idly that I would have a look and see what the bit of paper in every packet said.
Hmmm...
Very common side effects, (affecting more than 1
person in 10):
- Difficulty sleeping
- Headache
- Hot flushes
- Feeling sick (nausea)
- Increased sweating
- Muscle and joint pain (including osteoarthritis, back pain, arthritis and joint stiffness)
- Tiredness
Common side effects, (affecting between 1 to 10
people in 100):
- Loss of appetite
- Depression
- Dizziness, carpal tunnel syndrome (a combinations of pins and needles, numbness and pain affecting all of the hand except the little finger)
- Stomach ache, vomiting (being sick), constipation, indigestion, diarrhoea
- Skin rash, hair loss
- Thinning of bones which might decrease their strength (osteoporosis), leading to bone fractures (breaks or cracks) in some cases
- Pain, swollen hands and feet
So I rang the BC Nurses and asked for advice. Yep, I am taking Glucosamine & Chondroitin. No, I am really not happy at all. Yep, I would be pleased to see the Great Man to talk about this. No, I am not sure that I want to stop taking anything, but I would like to do something other than this as it's pretty awful. So they had a chat with the Great Man and I'm to stop taking them for now and go in and see him next week to talk about this.
Thing is, my cancer was 3 on the Oestrogen Receptive scale, which goes 1-8. 3 is the threshhold - higher than that, it's hormone therapy for five years. Lower than that, it's of little or no benefit. 3? That's the borderline. It might be doing some good, but it might not. It's making me feel a bit crummy (aka Blooming miserable) but do I want to take a chance that it is preventing recurrence or spread? that seems like a big gamble to me. There are too many people I know on the secondary BC path right now, and that's not a good place to be, so I am reluctant to give up anything that might have the slightest effect in keeping me out of there.
In other news, M has run away to sea. He's currently in a taxi heading North from Schipol to Den Helder, where tomorrow, all things being equal, he and his chum will be setting sail for Blighty. The weather forecast has the wind pointing in the right direction to get them home quickly - possibly just a little too much, though, it might be quite a bumpy ride. So at least I have something else to fret about for a few days!
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