Hi everyone!
I am due a stem cell transplant on th 9th Feb because my ALL relapsed last year.
Im facing atleast 6 weeks in hospital, 2 hours from any family and still no visitors allowed.
Does anyone have any advice or experiances that they think might be helpful? Anything i should take in with me that you found helpful? Did anyone maintain any level of physical activities, whilst being in hospital?
Thanks in advance
Hi APSO and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike and I help out around our various blood cancer groups.
I don’t have ALL but was diagnosed in 1999 with a rare, incurable but treatable type of NHL Stage 4a and although my blood cancer ‘type’ is different I know this journey rather well especially as I have also had two Allo (donor) Stem Cell Transplants.
We do have our dedicated Stem cell transplant support group where you can talk with others from many blood cancers who have ridden the Stem Cell Transplant (SCT) rollercoaster.
You may also find this thread Checklist for SCT Unit helpful where we have collected thoughts about what was good to take into the SCT unit.
My SCT unit was in Glasgow - I am in Inverness so a 8-9 hour round trip...... that we must have done over 30 times.
I was in the unit for about 4 weeks for both my SCTs and that included being rather ill during my second..... I am 6 years out now so the memories are getting fuzzy at the edges.
I actually had an exercise cycle in my room so was on it as much as I could especially during my first SCT....... as I said I was rather ill during my second SCT....... and my wife had a room next to the ward but she may as well have been on the other side of the world during my second SCT as I slept most of the time due to the amount of antihistamines I was on as I have some serious allergies........ but as I said it is all memory now.
I will keep an eye open for you in the SCT group.
Hi APSO
I can see that Mike has shared a link to the stem cell transplant forum already where you will get lots of information. I had ALL in 2013/14 and went on to have a stem cell transplant in May 2013 which luckily cured me and now I lead a very normal life.
Hopefully yours will be successful as well. If you have any questions please feel free to ask.
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
Ghaz Sorry to hear that your son relapsed after the stem cells. How is he doing now?
Paul
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