Hello everyone, I’m new to the forum. I was diagnosed with AML in November 2005 just after giving birth to my son. I had chemotherapy and was in isolation for the majority of the 6 months of treatment. I feel extremely fortunate to have survived as long as I have but I experience extreme tiredness and I seem a lot weaker than other people of my age…I’m now 45. Has anyone else been through this and still feel the effects years later?
Hi NJJ1977 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us.
I am Mike and I help out around our various Blood Cancer groups. I don’t have AML but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.
The post treatment part of the journey can be as hard if not just as hard as the diagnosis and treatments. I have had a significant amount of treatments over my years (hit my community name to see my story) so the post treatment recovery was long, hard and it took a significant amount of determination.... and pain to push through and come out the other end.......
But I am now 6 years in remission, this is more amazing for me as until my second Stem Cell Transplant (Oct 2015) I had only ever been in a maximum of 9 months remission before I went back onto treatment........ so I am living the dream and trying to live as full a life that is possible. Yes my condition is asleep so I try and not shout out loud to weaken it up again.
These treatment can indeed age you but it's important not to be pulled down by this. Yes you will be weaker than other your same age......... but the other have not been to hell and back.... so be kind to yourself as you have done amazing.
You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.
Let's look for some of the group members to pick up on your post.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Always around to help more or just to chat
We do have a general Life after cancer group but this covers all types of cancer.
Its a safe place to talk with others who are navigating this part of the journey.
What you feel is totally normal…… many memberd, once finished with their treatments move away from sites like these and try and put the whole experience on a high shelf so they don’t think about it regularly.
Have you checked for a Maggie's Centre near you? Our local centre in Inverness runs a monthly Heamatology Support Group where folks with blood cancers meet and unpack their journeys……. We have members who will gladly do a 4-5 hr round trip drive from the West Coast to attend the group - this is how helpful this is to them.
