Hi, I’m new to this. My husband was diagnosed earlier this year with AML with chemo he did get into remission but BMT was the best option for prolonged remission so he underwent this in Sept with a 10/10 unrelated donor I’m his carer and struggle with the enormity of everything, I dread every blood test he does (2 per week), can’t see how we will ever have some “normality” back in our lives. Absolutely no one I know has had a transplant so I’ve no one to talk to, People I thought were friends and would “be there” haven’t come thru unfortunately, I know no one wants the cancer baggage.
I suppose I’m looking for reassurances (I know no one can give me them) but I’m struggling. Can’t face Xmas, struggling with the whole “isolating” not seeing anyone/going anywhere. Just wish this nightmare would end.
Hi again SMc23 and well done navigating across to this corner of the community.
As I said I have had two Allo (donor) SCTs June 2014 then Oct 2015 and remission eventually achieved in Sep 2016 so understand this journey rather well.
He is only is only 2-3 months out from his SCT so this is very early days in the process so regular bloods, clinic appointments, reviews are normal but this will start to stretch out once he hits about day +100 when they will reduce his immunosuppressants and let his new immune system find their legs.
My SCT unit was in Glasgow and we live in Inverness so we were doing a weekly 9hr round trip to Glasgow for the first few months - during winter for my second Allo SCT
My head SCT Consultant told me that going through a SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training
She also gave me a basic scale for classifying where I was on the recover journey.
50% = when in the hospital going through the transplant process.
60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepaid food. Reliant of others for preparation of food.
70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.
80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.
90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.
100% = No physical after effects and able to do multiple tasks including being back to work.
We have this old thread Life after a SCT - A Survivor's Guide where we collected some post SCT experiences.
Normality will return...... but he is a baby at the moment so it takes time to get things going.
You will see from my profile (hit my community name) that if SCT did not work I would not be talking with you now....... these months post SCT are hard but it is part of the process to get life back.
How able is he?....... when I say that, I left my SCT unit in a wheelchair as I lost the use of my legs so hard to learn to walk again through weekly physiotherapy appointments, a lot of pain and determination. But as soon as I was on my feet we were out walking, even in the winter.
The post SCT isolation (even without covid) can be challenging but it is all about looking at the greater good in all this and just remember that this period of time is temporary and will pass.
The group is here to help and support you through this period.
Good morning. I was in The Beatson for both my SCTs just before the unit moved across to the QEUH so I know the staff very well. Dr P although to the point is on the ball so he is in good hands.
Getting your head round the fact that his body was put through so much helps you understand why the road to recover can be very bumpy.
My wife Fiona had a room connected to the SCT Unit so she was there all the way through the 4 weeks for the first Allo then 3 weeks in the Pond Hotel when I was having my radiotherapy then the 4 weeks in the SCT unit for my second Allo.
I will always say that those looking on have a harder time in some respects. The person in the bed just has to go with the flow and let it all happen.
As you will see the post SCT recovery can be so different with Nick’s wife doing very well but others have a hard time. I did not have any GvHD following my first Allo but did with my second. It was not that bad and was managed very well by the team.
Its all about holding your nerve and seeing this as a process that will pave the way for a new future ((hugs))
