This is a major step forward for my brain so i'm not going to apologise for the length. Nope. I'm not...Hope it's useful for someone. February 12th-14th So got to stay at home from Friday evening to Sunday afternoon. I now hate the thought of going to hospital and see it as a major interruption to my life - I think the fact that I’ve had just one week of being home and feeling ok since xmas eve might have something to do with it. So we set off with me sulking like a four year old for the first ten minutes of the journey. Managed to get my hospital head on though by the time we got there :D Sister did the usual bloods and we talked about the fact that I’d been told I’d “definitely” be in isolation for this stay. She said I’d be in a bay which meant other patients and their visitors (and kids as half term was coming up) and a shared bathroom. This sounds really awful written down but by this stage my head’s just full of the fear of getting an infection that might kill me. I’ve been on enough bays to know that people with colds etc still visit and there’s a lot of them in a confined space. She was very good and understood that I was clinging on to what the docs had told me and I struggled to cope with any deviation from the plan. I’m usually really easy-going but I seem to be getting so rigid in my thinking about this stuff. She’s no doubt seen it all a thousand times before. As it turned out though, a couple of men needed to be admitted which meant that the bay had to be converted to a male one. A few bed moves were needed so it was 4 hours before we got settled but it was worth it to be in my room… Monday February 15th Feeling tired but generally OK and quite happy to lie in bed dozing. Visit from family in afternoon. No appetite so don’t eat anything and drink a bit (though not as much as I should).
Tuesday February 16th
As above but feeling sick - ondansetron and metoclopramide not as effective as usual but manage to hold on to my innards. No appetite. Drink less than yesterday. Keep trying though because I don’t want to be hooked up to a fluid drip. Consultant comes in the afternoon and when I ask about the bug they’d found in Newcastle (after chemo, they’d mentioned finding ‘something’ but I was too ill to ask questions), he says it’s salmonella. Frrreak out! He asks about food poisoning etc. I haven’t eaten anything much at all for over a week and am good at washing my hands etc..(made a mental note to check for secret insurance policies taken out by the family ;D). So I’m like “Why did they take a stool sample on the day but go ahead with the chemo anyway? If you’d known the result would you have delayed transplant?” “Erm, probably, yes” he says. “Jeeezus Christ on a bike” think I (sorry for any offence), “so they’ve fried my immune system, my neutrophils are due to hit rock bottom tomorrow and there’s millions of little salmonellets running round my insides!” Am started on some antibiotics for that. Check the insurance position with P and he’s in the clear, haha.
Wednesday February 17th
Feeling and being sick now. Am managing to keep tablets down due to my immaculate timing! Not eating at all and barely drinking. Scratchy throat and tingly tongue but nothing painful. However, diarrhea starts today. And how. Am introduced to the delights of the Bristol Stool Chart (which, I’m told, is also available on a mug. Mmmm!)
I was at number 6 if you are interested!!! A sample is dutifully provided for analysis by the kind of people who drink out of Bristol Stool Chart mugs (allegedly)… Have decided not to worry about salmonella and just go with the flow as it were…oh and my neutrophils hit rock bottom (must be a bad joke in that sentence somewhere?) Thursday February 18th Sickness, diarrhea a sore throat and something that feels like an ulcer brewing on my tongue. Have caphosol, difflam and nystatin mouthwashes to take 4 times a day each - full time job in itself. Tiredness means the credit on my dongle for internet access has been a waste so far - my laptop hasn’t seen the light of day. I can’t be ‘bothered’ to text people - it’s too much brainwork. So daytime tv comes into its own - quite happy to look at the moving wallpaper til Pete arrives. And my bum hurts.
Friday February 19th
Stool results show C-difficile has gatecrashed the salmonella party. Both probably just opportunistic - you know the cat that is my immune system is away so it’s “Hawaay the lads! Partay!” Feel too crap to be bothered by this news - whatevah…More antibiotics for that and a drip with potassium because I’m not drinking enough. Meh! Saturday February 20th
Nice cream (“with applicator”) for my sore bot and codeine for the pain. Am shattered from going to the toilet so often. Can’t sit down to go so have perfected the art of doing it standing up - an unexpected new string to my bow - and, boys, there’s absolutely NO excuse for you lot missing the bowl! Now I know why they put chairs in the bathroom. I need a ten minute sit down to recover my strength afterwards. Every time I go. My drip alarm also goes off every time I come out because there’s a bit of a ‘lip’ between bath and bedrooms and I don’t always manage to lift the wheels over it.
Sunday February 21st
Still got the vomiting, diarrhea, sore bot and the worst tiredness I’ve ever known. A shower lasting 2 minutes requires a sit down in the bathroom afterwards and then a crawl back into bed. Have to wait an hour or so before I can get up to clean my teeth. Still, tho my throat hurts, my mouth isn’t too bad despite the ulcers. Still not eating anything but managing to get tablets down. Am glad of the drip because drinking is next to impossible. So this week is all about...
However...my temperature is still normal so the bugs haven't got the upper hand yet...my line isn't playing up...and I'm 9 days post-transplant!!!
love kx
