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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Here I go again folks. I was on a real high up until this evening. My brother came home from hospital last night and I was thrilled to say the least. But today he feels quite poorly. His temperature is up and down. The Dr called from the hospital just to see how he was today, which was good of him and he was quite happy. But I do know my sister in law had got to ring back in an hour with another reading.
His blood counts have really gone up and in general he's ok. I want to know if its "normal" to have an unstable temperature and also he is feeling extremely tired. Does this happen? Could he still have effects of the chemo re tiredness? I'm so worried something has gone wrong with the transplant.
Sorry to bother you all agson9
Temperature spikes need to Ben called in and then the hospital will decide if they want you in or if they monitor like they seem to be doing in this case. Always get your brother to call the hospital as a couple of days delay getting to hospital can mean a much longer stay.
The tiredness can last for months and even now almost four years later I have days when I am absolutely shattered.
It is worse during the early weeks. It gradually the energy will return.. just have to give it time..
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Sickeness, tiredness, abnormal feelings, they'll all continue for a while. It won't be a quick recovery. Just be vigalent with temperature readings, keep him hydrated and fed. Little and often rather than big meals. Pot noodles were good for me, not particularly healthy but 'good hangover food' and it doesn't matter he if just has a little bit and throws the rest away.
Thank you so much for getting back to me. Apparently he does have a slight urine infection. His temperature is a bit more stable today. Not keeping much food down him. He's just really fed up of feeling ill and he knows it's a long road ahead.
I really appreciate you telling me how you coped in early days and how you are today. So proud of you that you have come so far. Once again thank you so much.
Surviving the struggle together xx
These first few days/weeks are miserable, as you're out of hospital but weak as a kitten and progress seems soooo slow!
It does improve, and he and partner have done well in dealing with the urine infection, lots of fluids.....keeping that thermometer handy is good.
Never ignore any 'off' feelings even if temp is normal. Always keep that phone number handy and call if in any doubt at all.
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