15 years ago I was diagnosed with Non Hodgkins Lymphoma Grade 4 with 2 weeks to live, now 15 yrs later I have it again and am grade 3b and on watch and wait this has of course affected my mental health having to walk around with this cancer eating away at my body, feeling more lumps appear and sweats, i don't understand why they just can't get rid of it, unless you have had it you dont understand what your going through both physically and mentally, the first lump i discovered was xmas 2020 and are still waiting for treatment, and i don't know how long it has been there before the discovery of the lump. It would be nice to talk to someone who understands
Hi Kim kym and a very warm welcome to this corner of the Community but always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 with a rare, incurable type of Skin NHL Stage 4a so although my Lymphoma ‘type’ is different I do understand the challenges of this journey well.
I am so sorry to hear that you have had a Relapse. The problem with these low grade NHLs like your Follicular Lymphoma and my Cutaneous T-Cell NHL is they are incurable and can return at any time.
You will see from my profile (hit my community name) that I basically had to have treatment for 16 years as the longest remission I achieved was 9 months……. But I am now over 5.5 years into remission so things can change as treatment gets developed.
I am not cured but am happy to live with my lymphoma but not to allow it to define me and my family.
Active Monitoring (Watch and Wait) is so challenging as it is so important to treat at the most ‘effective’ time for the treatment to have the best chance of making a difference.
Always around to chat.
