I’ve only just joined the forum and seen this post, but first of all congratulations on your transplant, even though you might not feel it warrants congratulations at the moment. I hope you’re feeling a bit better now and are off your feeding tube, although I imagine you’re experiencing all the joyous gut exploding side effects of the conditioning chemo right now.
I was diagnosed with Acute Myeloid Leukaemia in May 2020 and had an allogeneic transplant on 2nd October 2020, 2 years ago on Sunday. You said you are a positive person and like to look on that side of things, so hopefully my story will help you. I’m currently feeling great and was able to play the part of the fitness instructor in an amateur production of Legally Blonde just last week, involving a full on skipping routine whilst singing. At your stage of treatment, getting back onstage in any capacity seemed a long way off but was a goal I held to help get myself through.
My journey was not completely plain sailing and I needed a couple of top ups of cells through Donor Lymphocyte Infusion back in 2021. However, compared to many, I am incredibly lucky and have had a comparatively smooth recovery - something which I wanted to read about others having when I was starting my recovery, to know that it didn’t all have to be horrendous. I am in awe of those who had to cope with much more difficult situations in their recoveries.
I will say that I adopted the ‘one foot in front of the other’ approach, knowing that eventually I’d look back and realise how far I’d come since receiving the cells that day. Have your goals to aim for, don’t worry if those have to change or shift slightly and look for every little positive you can, from being able to climb the stairs in your own for the first time to being out driving a road that you always used to drive on. Lots of little wins add up to make one big one.
All the best with your recovery and kick leukaemia up the bum!
Hi Nina
Im so grateful to you for sharing your story as i embark on a possibly similar journey with my husband recently diagnosed with Myelodysplastic syndrome (MDS). Im finding it so helpful to hear peoples experiences and learn that it might not be as terrible as i at first thought. If others can do it, then so can he!!
I hope youre keeping your chin up and focussing on getting home to your family.
Wishing you all the very best x
Wow @KTBovs a great big welcome and what a brilliant post you wrote, thank you so much, this is what our forum is all about, personal experiences.
I definitely celebrate all anniversaries, however going through diagnosis and treatment during Covid times cannot have been easy.
I bet your role of fitness instructor must have been such fun in your production of Legally Blonde.
Please keep posting and look after yourself.
Apologies @Coastgirl for the delay!! I am day +73 post transplant and doing really well!!! Mentally feeling less like a ‘patient’ more like me! Physically however my strength and stamina are still lacking but the extreme fatigue has gone and no longer needing a mid afternoon ‘nana nap’!!! Have had graft v’s host disease which seemed inevitable but thankfully mildly, so didn’t need to be readmitted! Go back to UCLH weekly and the team as ever are truly amazing! Appetite is still tricky and kidneys aren’t liking the ciclosporin but in the grand scheme of things I feel brilliant. Thanks so much for asking how it was going. Xx
