Until this shituation arrived, I never realised how much I took for granted. Walking, driving, sleeping, working, thinking. All of these and more have been taken out of my hands since treatment started. I manage to walk now most days as mercifully my pain has reduced. However, I have my adamantium again this Friday, the day after the last time I had it, the pain was awful, I was crying out, I'm crossing everything this won't be the same again. Other people have said the first was the worst so I really hope this happens for me too.
Anyway, this post is about sleep, or lack thereof. For the past week, I have had really awful sleep. As in I haven't really had any. The other night I watched the clock tick by, hour after hour with no sleep coming. Then, the night sweats arrived. These are a hideous side effect of the menopause, which are exacerbated by my letrozole. One night I had 18 in a night, they keep you awake, or if you are asleep, they wake you up. You end up "sweating" the bed. Sometimes it's a minimal sweat, sometimes it's a full on drenching, Whichever it is, it's not pleasant.
Unfortunately, because of my oestrogen positive breast cancer, I can't take HRT, so alleviating the symptoms has to come another way. I called my trial team to discuss and they recommended a few drugs, we had to wait a few days to hear back from Novartis who are the trial owners, and unfortunately I cannot take them.... Bollocks. I also cannot take any natural sleep aids (though they wouldn't help with the sweats) like herbal Nytol, Kalms or anything else similar.
My trial team also told me I could change my letrozole brand back. When I took letrozole for a week before I took my ribociclib, I was on a brand called Dr Reddy's. When I started the trial drug I was given a new brand called Manx Healthcare. Before the trial I had very minimal night sweats, since starting the trial drug, the sweats have started. It could just be coincidence (as I'm getting further away from my oophorectomy and therefore the side effects from that could be kicking in), but they've said I can switch back, so I've done that for the past 3 doses. It will take a while for my body to get rid of the other version and may make bugger all difference, but it's worth a try.
Rob has very kindly bought me something called a Chillow. It's basically a cool mat which you put in your fridge. It is full of a gel which becomes cool and then at night you put it in your pillowcase. When you lie on it it's supposed to keep you cool. I've tried it for two nights now, it does keep you cool for a few hours, but then heats up with the warmth of your head. You can turn it over, I'm not sure how effective it is to be honest, but it's something. We also have the free-standing fan going.
So last night my sweats reduced, thank goodness. However, I didn't sleep. At all. It was awful. Again I watched the hours tick by (this time metaphorically as I try not to look at the time on my phone), watched the sky get lighter, twisting, turning, getting hot, shivering, it's just awful. I ended up moving beds in the end. I think I slept from 5:30-6:30, that's it. Today I am beyond exhausted. We are going to try sleeping under sheets rather than the duvet. We have been sleeping under a duvet and also tried a quilt but neither are ideal. Let's hope the sheet idea works even a little.
I took a call from my trial team earlier today, I'm allowed to take diphenhydramine! This is a sleep aid which is an antihistamine that works by reducing histamine which stimulates your mind. My mum has picked me a Nytol version up today, so I will try taking one tonight and hoping that it works.
So my magic (hopefully) combination will be:
Fan + chillow + diphenhydramine + sheet + new-old letrozole = sleep....?
Fingers crossed!
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