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...
I managed to eat a few mouthfuls of food breakfast, lunch and dinner, and made my way through with just one ensure so that is positive! Also, the team here have been lasering the inside of my mouth to help stimulate the healthy tissue under the mucositis and today decided I probably wouldn't need any more and I have to say my mouth and throat DO feel better! I've massively reduced the oral morphine from three a day to one.
Had a few wee bumps along the way, including one sudden breathless allergic reaction to platelets (which has never happened before!) Today, I woke up with nettle rash all over my torso, a super swollen and very red/hot face so they've changed my antibiotics (again, never reacted to antibiotics before) and tonight the rash is still there and has now spread down my arms but we're holding off on the piritin until my platelets arrive, most likely in the middle of the night. Also, upper respiratory cough and constantly coughing up sputum which no one told me could happen but the doctors here don't seem overly concerned about mainly because my lungs sound clear and because whatever I'm coughing up is clear. Lovely!
Temperature has been relatively fine although wee spikes up to 38° over the past two nights and probably again tonight which we're currently dealing with by using dispersable paracetamol. Most of my tablets have moved over to liquid forms until my counts start to rise so now it's a case of antibiotics, had my chest xray done this afternoon, and riding it out.
Eyes are definitely on the prize as it's about a week from now I should see something happening with the neutrophils so I'm excited that I'll maybe be home before the 1st of March!
Hi Kirsty, this will sound rather odd to people who do not understand this SCT process but progress is being made, yes fires to fight and continuing to expect and deal with the unexpected (and that is just your team) but you are getting close to the turning point where this all starts to kick in and the all new you starts to grow ((hugs))
Mike - Thehighlander
Some journeys take us far from home...... but some adventures lead us to our destiny - CS Lewis
BYea Hi Kirsty,
glad to hear you’re doing ok- sounds pretty much par for the course- Katy found her neutrophils started to rise around day 10I think to 0.2 or something but they very quickly rose once they’d started and I think it was day 20 when she got home, her neutrophils went up quick but they like to assess for a few days-they went up to 2 and she was able to go down to the cafe with nic or us just to see how she was doing before she got home- a bit like a transitional period! But the end is in sight!
it will be interesting to know whether your neuts have made a teeny bump from the bottom as your mouth is improving? I haven’t heard of the lasering before but hey, they are developing new ideas all the time!
Youre doing fine, keep battling on and the big goal is getting nearer!
My neutrophils and WBC count is 0.1 today so they think the rash is due to engraftment syndrome, and they'll keep me on the antibiotics just now, keep an eye on me but then if need be they'll treat with steroids to get it over and done with.
0.1 on day 13 is crazy for cord blood, it's usually day 21!! Hurrah! They did say it could be a false dawn but I hope not, hopefully by this time next week I might be able to leave the room!
Oh well done
It was T+18 for me to get to 0.1 then they put me home at T+20 at 0.9
Yes moomy, The Beatson (QE) have used laser treatment on SCT mouth issues for a number of years now, I meet a few folks when I was in who had it done as these were the folks that the Caphosol did not do the full job and it worked well.
The laser has turned my mouth around and the whole inside of my mouth is pink and smooth, hopefully back to normal asap!
Haha, yay! I had a gut feeling that your counts were on the up as you weren’t so sore, Kirsty, that’s terrific news!
Day by day, little steps now.....
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