Hello everyone. I’ve just decided to join the forum to try and help me deal with myeloma and the impact. I’ve been diagnosed since December 2025 and also have a blood disorder called light chain deposition disease LCDD. Which attacks my kidneys, resulting in me being on dialysis 3 times a week too.
I think I’ve just pushed it all aside and just plodded on instead of dealing with the problem which has resulted in self destructive behaviour which I justified as “enjoying “ life because it might not be as long as I thought. Stem cell transplant happened August to September and was absolutely awful and I debated whether it was actually worth it because I felt fine beforehand in spite of the health issues.
can somebody kindly share how they managed to get to grips with it properly and just share some experiences that could help myself and themselves possibly, just with the discussion. I have a brilliant ex partner who is my best friend to talk to but I would love to be able to open up to someone and not feel some of the emotions that prevent me doing so with her.
Hope to connect with someone soon.
kind regards to everyone. Keep your chins up.
Greg
Hi Gregorie and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your journey.
I am Mike and I help out around our various Blood Cancer groups.
I don’t have Myeloma but for some context I was diagnosed way back in 1999 at 43 with a very rare (8 in a million) incurable but treatable type T-Cell Low-Grade Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare fast growing type of T-Cell High-Grade Non Hodgkin’s Lymphoma was presenting….. so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well……. especially as ai have had 2 Allogenic (donor) Stem Cell Transplants (June 2014 then Oct 2015)
Stem Cell Transplant can certainly be a challenge but as time goes in thing do improve but it does take time.
My SCT Consultant told me that going through the SCT process (diagnosis, treatment and recovery) is like doing a marathon and a boxing match every day over all the months to this point in time….. and this was done without any training.
Think about doing the London Marathon and boxing Mike Tyson without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality.
Not giving yourself enough time could be a backward step……. be a patient patient 
There are a few active members in the group at the moment so let’s look for them to pick up on your post.
For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.
Always around to help more or just to chat.
