Hi! I was diagnosed with CML in February 2024. I am on my 3rd line of treatment and my latest BCRabl was at 0%. Really really good news and I am so pleased to have got to this stage.
But emotionally and mentally I am exhausted. I don’t know why I feel like this. I am technically in medicated remission and I feel so pleased and grateful about that but I also feel deflated and anticlimactic.
When I was told I had reached 0% (over the phone) the doctor was very matter of fact, there was no fanfare. I had expected a bit more enthusiasm and congratulatory vibes but I didn’t get it. I didn’t get to ring a bell. And I think that makes me feel like I haven’t achieved anything when I know I have and that I am so fortunate.
Has anyone else ever felt like this in their blood cancer journey?
Hi again Ila48 ……. The third part of the journey….. ‘post treatment’ can prove to be just as hard as the first 2 thirds (diagnosis being the first third and treatment the second third).
We had no bell in the 2 units I was treated at and if there had been I would not have rung them….. one due to one of my types of T-Cell NHL being incurable but more importantly (in my mind) there were people being treated in the same unit who would never get out of the unit, never hear remission, and had no light at the end of the tunnel.
Controlling the noise between the ears is the one post treatment task we have to do…… no one can do this for us.
Controlling the noise helps us define how we live with the gift we are given (remission)…….. rather than our cancer journey and the what if’s defining us.
I found this paper very helpful……. even now, 9 years 8 months out from treatment I still make a cuppa and have a look through it…..
After Treatment Finishes - Then What?
….. by Dr Peter Harvey as it highlights the post treatment milestones.
‘Talking’ is important…. Who are you talking with?…… this is important.
