Hi everyone.
I’ve posted on here a few times in the last six and half years. Briefly I was diagnosed with Acute myeloid leukaemia (AML) May 2018 , lots of chemo during that lovely long hot summer , gaining remission and no need for transplant. Had the best Christmas ever but early February 2019 was told relapse was imminent. Had a transplant May 2019 , spent two consecutive birthdays in hospital! First year was tough but by March 2020 was starting to feel normal again. The pandemic came along which was scary but all in all life was good , back running , even went back to work for a while. Fast forward September 2022 my lovely wife Alison was diagnosed with bowel cancer and sadly died early March 2023 . Mentally destroyed but physically still feeling good but last January my blood counts had started to drop mostly whites and neutrophils . In November a bone marrow biopsy showed my chimerism has dropped to 30% and I have early signs of Myelodysplastic syndrome (MDS) . The plan is a donor lymphocyte infusion soon and if that doesn’t work monitor the Myelodysplastic syndrome (MDS) until it shows signs of progression and then another transplant . I’m still feeling absolutely ok physically which is a bonus but anxious about what the future holds , and it’s so difficult dealing with this on my own .
Mark
@parkrunmark I am so sorry to read that your Alison has passed away and can’t imagine how devastating that must be. You are having an horrendous time and your anxiety must be through the roof. I hope you get your infusion very soon and that helps. Sending best wishes.
Oh @parkrunmark Thanks so much for reminding us all of what the last six and a half years have thrown at you and how really difficult it is for you now going through it without Alison beside you.
I am so glad that you have posted as you have been part of our forum family for so long.
I never walk a Park Run without thinking of you.
I am so glad that you have a plan, and I think many of us get anxious not knowing what the future might bring. Trying to keep it in the day is so, so hard
Do you think you might benefit from talking to someone, I did.
If so, your GP might be able to help or Macmillan, Maggies, etc at your hospital or privately via BACP/UKCP.
It is a lot to deal with on your own and as you say you feel physically OK. and as I know all too well it is the emotional side that really hit me.
The Blood Cancer UK support line is there for you on 0808 2080 888 and we are here for you to say how it really is for you.
Be ever so kind to yourself and please do keep posting