Where was I? Oh yes; nine days into treatment so time has come for a bit of an update. Not too bad at the moment thanks, but I suppose a bit more detail would help.
Radiotherapy has not been a problem at all so far....I cope well with wearing the mask (though the radiologists, or are they radiographers, call it a "shell"); so you go in, lie down on your back and get clamped to the table, which is very hard (hard as in solid and uncomfortable rather than hard as in difficult). They make minor adjustments to your body position and then talk in some sort of foreign sounding language around your head while they make final miniscule ones (they sometimes say "teenth" and I want to make a joke about not being allowed to smoke any more, though it's kind of them to offer, but the mask has me struck dumb by now). Not that I've smoked for thirteen years.
Then they tell me they're done and that they're off out (hopefully not for a smoke), and sometimes they ask if I'm OK (give thumbs up) or tell me if it's a long one or a short one on that particular day. It's only "long" if the oncologist has asked for some pictures.....the machine doubles as radiation zapper and CT scanner; neat eh? Bit like a sniper having a camera on his telescopic sight, he can shoot the bad guy and then have a 6x4 of the result.....probably a digital camera would be best because if you tried to get it printed at the local chemist they might call the police in. I'm waffling.
So you lie there and it makes beep beep noises for a bit, then a few clunks, then I start wondering if they've forgotten me, tell myself not to be daft, listen to the music of choice for a while (Crowded House today, yesterday was local radio fab FM or whatever), try opening eyes and fail, wonder what I'd do if my nose starts itching even though it never has and there's bugger all I could do if it did, wishing my back would stop hurting and wishing it was done; and by then it normally is.
The girls, women obviously but they seem ridiculously young to be doing such a brilliant, professional, reassuring, friendly and important job (viz, keeping me alive) then come in and release me.....which is a nice feeling.
Then I go home, or I go for a blood test (today), or I see dietician/speech therapist (Tuesdays), or I see my whole team (
My neck is beginning to get a bit sore and my singing is getting worse (didn't think that was possible!).
The chemo last Tuesday was an OK day in itself; a lot of sitting around, eight hours, in a comfy chair looking at the laptop while Deb watched movies on Josh's tablet between nipping out for a smoke (probably meeting up with the radiologists) or a snooze in the car. There were several preparatory drips before the actual chemo drug (Cisplatin) and a couple after, they took between half an hour and two hours a bag.....the one to protect my kidneys hurt my arm a lot though, known side effect, so they had to wrap it in a thing like a mini electric blanket to dilate the vein.
Side effects? The classic image of the bald, vomiting chemo patient won't apply in my case; for one thing Cisplatin doesn't make your hair fall out (not that I have much to lose anyway) and the nausea was well controlled by many and varied anti-emetics, some intravenous and some that I brought home with me. Apparently they work well for most people and the staff in there seem mildly irritated by the "throwing up" routinely shown on TV because it's the exception rather than the norm.
I was very tired a couple of days later, had a sixteen hour sleep and woke up still exhausted, but it's not a nice exhaustion.....you just feel rotten. More than a week later I'm entering the "body feeling better but immune system fucked" phase of the cycle which will last until next Tuesday, so I need to keep away from sneezing children. It's strange that I'm so vulnerable and potentially hours from death (obviously won't happen because we're taking every precaution.....along with my temperature every few hours) while I feel so healthy. Then the final week of the three the immune system picks up and I go back in for the second dose (4th Feb) and we start again.
All in all. Twenty-seven more radiotherapy fractions (that's what we experts call them) to go plus two chemo cycles and I'm feeling pretty good, positive still, realise much worse to come before I/it gets better, I'm more informed, less afraid, probably over compensating by being too jovial about it at times (Debbie finds that attitude hard to take). My brain is a sieve, I keep losing and forgetting things.....glass case yesterday; today I carefully packed glasses, phone and appointment list in my bag and then left the whole bag at home!
Feeding tube is still in place and I'm keeping it nice and clean....no need to use it yet but I flush it through with water (never gin) every day.
That's about it for now. I could start talking about the psychological effects of the trials, tribulations, laughs, love-ins and fights this is causing within our three person nuclear unit but I'd still be here in a year.....without even touching on "extended" family, so best leave that wound uncovered for a bit.
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