Short blog as I’m pretty tired. Had rest of chemo ending with Melphalan – the biggie. Tbh I was struggling a bit with side effects – terrible feeling of nausea all the time. Luckily I have the PEG in and they feed me every night. But I do need to eat and drink more.
Yesterday the donor cells were dripped in. I was nervous, but there were no problems. The donor kindly produced a huge stack, some of which are in frozen storage in case I need some sort of top up, the name of which I forget.
Not too bad today. Have had terrible indigestion, but have eaten a bit. Was nagged and told to get out of bed more. I do stretching exercises every day and walk up and down like a prisoner, especially while having my mouth washes – I have three different ones which have to be spaced 20 mins apart. The whole lot has to be taken 4 times a day, so what with tooth brushing and eating it’s quite a tricky thing to get right.
I get some other good products like baby wipe type loo paper, impregnated with some sort of barrier cream. I really need it atm! There’s a proper cream to go with it too if you need it. Also there’s a shower gel which kills off bacteria for a while – you leave it on for 30 secs.
Showers are such an effort – I already hate just getting up. It’s all so much trouble. But I know I have to do it. Hygiene is really important. I don’t think the showers are very good – there is nothing to sit on in them, which tbh is a necessity when you are weak and wobbly. If you want a chair they just have some old plastic moulded ones like school ones.They are too big. I’ll be picking up on that if they survey your patient experience. No shelf for shower gel either.
I’ll be asking for my head to be shaved soon as it’s very irritating when the hair starts falling out and your scalp gets sore.
I know the runs and the temperatures will hit in soon, so just taking advantage of a bit of peace and quiet while it lasts.
Don’t worry if I don’t write often – I’ll try to catch up when things start to improve but could be a while as they get worse before they get better.