Hi. I am 37, 2 young kids and was diagnosed out of the blue in November 2019 with AML. Cytogenics meant that chemo would not be enough and I would need a SCT to stop it from coming back. After 2 rounds of chemo I was classed as MRD negative which was fantastic, in March I was admitted for another week of chemo, 2 rounds of full body radiotherapy and then revived a double cord (cells from umbilical cords) transplant 8 weeks ago. They also found I had 3 blood clots in one of my heart chambers at the start so have been undergoing treatment for this also.
my bloods are looking good and the cells seem to be doing the right things, but I can’t seem to shake this feeling of doom, like something is going to go wrong, I’ll be diagnosed with something else or the worst part being I try and stay awake as much as I can at night as I am terrified that if I fall asleep I may not wake up.
due to Covid hitting at the wrong time I have now not seen my children for 9 weeks, I am having to self isolate in a hospital funded flat and am likely to be here for at least another 5 weeks.
has anyone else has a cord transplant that can share experiences? Does this feeling of always being on the edge pass? Am I wrong to feel sad ALL the time?
many help from people who knows that this is like would be great.
thank you. X
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your post SCT challenges. Although I have a different type of blood cancer I do understand the issues as I have been through two Allo SCTs with cells from my brother.
Being on edge following SCT is normal as this is a big process you have been through but these feelings will pass.
Sorry to hear that you are away from your family - you are well open for infection at this point in time so in the long run this is the safe way forward.
I did not get to see our grandchildren for a few months following both my Allo SCTs - this was hard.
We do have a very supportive Stem Cell Transplant group where you can talk with others who have been on the SCT road. We have had one person with a Cord SCT in the group but in reality most donor SCTs are the same.
Posting in this group will give you the opportunity to talk with people who know exactly what you are dealing with at the moment. Follow the link I've created, join the group, then hit ‘start a discussion’ and you are ready to go. You could then copy and paste the information from this first post into your new discussion or you can just join in with existing ‘Discussions’ by clicking on 'reply'.
We also have this ongoing thread Life after a SCT - A Survivor's Guide in the group - hit the link and have a look.
I will keep an eye open for you in the group.
