Life after APML, MDS, AML and allo SCT
Hello there
I was recommended this forum by a health worker today. Advanced sorry for bluerghing/pity party mode
I had a blood test in 2016 as I had moved to a new area. At midnight we received a call telling me to get to A &E as platelets at 4. Soon diagnosed with APL. Had several cycles of chemo and managed remission the following year.
Managed a couple of years before therapy related MDS reared it ugly head. That then transformed to AML. Given poor prognosis and started on more chemo. Then Christmas 2019 given a stem cell transplant thanks to a Polish unknown donor.
Since transplant it seems to be one thing after another. More and more labels and letters. I am totally fed up with it all.
My team at Kings seem unconcerned about how I am. Yet I don't recognise myself anymore. Feel so old and incapable. Facebook seems to either be full of "at least you're not dead" or "I walked 500miles this month" kind of posts.
Anyone else ever felt totally lost and depressed and then angry at yourself that you aren't enjoying being cancer free? I felt more alive in the middle of transplant ambulatory care for flips sake!!
Hi Cat73 and welcome to this corner of the community.
I am Mike Thehighlander and I help out around our blood cancer groups. I don’t have AML but was diagnosed back in 1999 with a very rare skin Non Hodgkin’s Lymphoma (CTCL)…… but a very long story short (hit my community name for my full story) I had my first Allo (donor) SCT in June 2014 then my second in Oct 2015…….. so understand the journey you are on very well.
You are ‘only’ 18-19 months out from SCT….. based on my journey it took a good 2-3 years to say I was out the other end living a comparatively normal life - what ever normal is now.
You have also had Covid appear during your post SCT recovery so this has made a hard recovery journey even harder.
We do have a Stem cell transplants for blood cancers group where folks hang out and this thread is a rambling collection of post SCT experiences Life after a SCT - A Survivor's Guide
I unfortunately will never be cancer free, my one is asleep so don’t shout loud…… but the fact I was told I was in full metabolic remission back in Sep 2016 for the first time in over 17 years most likely does not make me the best person who will attend your ‘party’ as I am living the dream and am a completely glass half full person.
But always happy to talk on this thread or in the SCT group ((hugs))
