Amazed that it's only six days since I updated, seems like a long time ago...it's been a difficult week. Having thought at the time of the last entry that I was coming out of the chemo downer it just got downer and downer unfortunately, and it was only this morning (Weds 12th) that I woke up feel...
...interlude while author rushed to toilet to vomit...
...ing a bit better. At least I thought I did!
I do physically feel much better today, got up this morning at 7.30, went for RT (23 of 35), went into Tiverton with Deb and I'm still up and about at 4.15 but the eating issue is still a big thing. Said before I need my weight to be reasonable when all this is done to help with the recovery but I can neither eat anything substantial or keep down the vile drinks I have to put straight into my stomach (it was another one of those I lost in the above "interlude"). Seen dietician and an oncologist this week and they gave me more anti sickness pills but that's not the problem.....I'm not digesting anything so stopping me from being sick just meant I got more and more bloated; then it doesn't matter how many anti emetics I've taken, if there's no space left then there's no space left! Don't really want to go down this line but there's fuck all action at the other end, despite laxatives, so I'm stuffed. Literally.
Seeing dietician again tomorrow but I really don't see a solution....hopefully she will (though her last solution was "just keep trying" so I'm not hopeful). I'm beginning to think it's inevitable that a week or so at the end of this is going to be spent as an in patient....wasting away here.
Also on the "in patient" worries is the question of whether they give me the third chemo or not. It's always been provisional, and various people have talked about it being a possible rather than a definite. Said before that RT is my main source of "cure" and that the chemo just boosts its effectiveness by about 5%. My feeling at the moment is that I really don't want to have it, because I know for a fact that with the second having been ten times worse than the first the third will be....well I can't imagine. I know for certain that I couldn't do it at home; so unless the docs tell me it's "life or death" I plan to give it a miss. If he says it'll improve my one/three/five year survival stats from 50% to 52% I'll take the risk...fuck it.
Been trying to get my head round how some people cling on for dear life no matter how ill they are, my dad was one, horribly sick for the best part of ten years but too scared to die to let go. Sometimes see little shells of people being wheeled around oncology in their beds, cadavers with a faint pulse they look like.....why not just let them go? Never will I be like that......I hope; but who knows how they're going to react until they get there?
On that cheerful note I'll have a little lie down I think.
Wednesday, 12 February 2014
Thursday, 6 February 2014
Another delay!
So another fortnight or so in and surprisingly I'm not really feeling too much worse.....it's 1.50am on Friday 7th and I'm up because I've been in bed for about sixteen hours a day since Tuesday's second chemo session; good grief it knocks you out! Twentieth RT session in about eleven hours followed by my "team" meeting.....but the RT side effects (I keep wanting to write SFX but that's "sound effects") are still really manageable. Many people on strong pain killers by now, hear of people on morphine in the third week but I'm going to hit the fifth just still on paracetamol and ibubrofin.....what a hard bastard I must be! Either that or lucky.....probably lucky....actually definitely lucky.
Anyway, eating is the issue now, keeping my weight up. The nasty taste buds have gone from not liking savoury to not liking sweet to not tolerating anything other than water or (strangely but gratifyingly) coffee; Marmite off the menu sadly. Mouth just tastes permanently nasty now rather than just when trying to eat something; and even keeping down high cal supplements from the dietician was impossible after the chemo so I was sick on Wednesday night....first time. I'm supposed to be getting down seven supplements a day in addition to trying to force down solids (impossible at the mo but could get a bit better once the chemo effects ease) and managed one yesterday.....and that one was using the feeding tube, for the first time, because by mouth wasn't an option.
Got to say now in the wee small hours I feel a bit better so have to start a more concerted effort on my weight, dropping fast, in the morning or I'm going to get myself admitted as an in patient for the last week or two and that's the last thing I want. Still driving myself to hospital every day (against all family advice but none medical as yet) and beginning to wonder what happens next when February and all of this. treatment wise, is done.
Lots of shit and "rehab" still to cover and lots of checks to see if I'm clear but will I be well enough for a week end in Amsterdam/to buy my motor bike/week or two or three in Zakynthos/Everton v City (night in Elham would be good also but I'd need my taste buds for that!)?
Christ is it that time already? Means I've only had about twenty hours sleep in the last twenty four.....mustn't overdo it. Deb gently snoring downstairs (in her makeshift bedroom) should sooth me off.....difficult times for her when I'm a useless sod post chemo, sure I'll pick up again in a day or two. Night all.
Anyway, eating is the issue now, keeping my weight up. The nasty taste buds have gone from not liking savoury to not liking sweet to not tolerating anything other than water or (strangely but gratifyingly) coffee; Marmite off the menu sadly. Mouth just tastes permanently nasty now rather than just when trying to eat something; and even keeping down high cal supplements from the dietician was impossible after the chemo so I was sick on Wednesday night....first time. I'm supposed to be getting down seven supplements a day in addition to trying to force down solids (impossible at the mo but could get a bit better once the chemo effects ease) and managed one yesterday.....and that one was using the feeding tube, for the first time, because by mouth wasn't an option.
Got to say now in the wee small hours I feel a bit better so have to start a more concerted effort on my weight, dropping fast, in the morning or I'm going to get myself admitted as an in patient for the last week or two and that's the last thing I want. Still driving myself to hospital every day (against all family advice but none medical as yet) and beginning to wonder what happens next when February and all of this. treatment wise, is done.
Lots of shit and "rehab" still to cover and lots of checks to see if I'm clear but will I be well enough for a week end in Amsterdam/to buy my motor bike/week or two or three in Zakynthos/Everton v City (night in Elham would be good also but I'd need my taste buds for that!)?
Christ is it that time already? Means I've only had about twenty hours sleep in the last twenty four.....mustn't overdo it. Deb gently snoring downstairs (in her makeshift bedroom) should sooth me off.....difficult times for her when I'm a useless sod post chemo, sure I'll pick up again in a day or two. Night all.
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