Hi abd welcome to this corner of the community. I am Mike Thehighlander and I help out around our blood cancer groups. Although I gave a different type of blood cancer I have had a lot of treatment over my 22 years and I am still around and doing well.
Let’s see what if any of the group members are looking in for you to connect with.
Have you had any treatment in these past 12-13 months?
Happy to chat at any time ((hugs))
These conditions are all very complicated. I was diagnosed back in 1999 and apart from maintenance skin treatments it took 14 years before my condition progressed to the point that I had to have big gun treatments including 2 donor Stem Cell Transplant…… hit my name fur my story.
When watch and wait is suggested for you, it means it is in your best interests to keep an eye on your condition and to save treatments for when they are needed. There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.
It is challenging being diagnosed with a rare type of blood cancer and along with this is the challenges of meeting and talking with others on the same journey.
But look through some of the old posts then hit reply and see if any of the members are still looking in.
My CTCL is very rare as in 1 in 140000ish rare lol…… but a few years back I actually meet one other person in person and they were sitting beside me at our local Maggie’s Centre Heamatology Support Group.
Do check out for a local Maggie’s Centre as these folks are amazing. During lockdown a lot of their services moved onto online video support. But I see our local Maggie’s (Inverness) are starting to open up for one on one support.
