Hello all,
Following an unidentified possible viral infection that started in June 2024 and totally floored me, I was diagnosed with Mantle Cell Lymphoma early December 2024. I had a lot of blood tests, scans which revealed an enlarged spleen, and a bone marrow biopsy - I was told diagnosis was quite difficult - was beginning to think I would never get one and that I was imagining all my weird symptoms - but in the end I was told it was confirmed as Low grade MCL at a minimum of stage 3. I have been put on Active Monitoring.
I am still reeling a bit from that. Initially I took to heart the advice not to Google an illness, and extended that to do not read anything at all. Unfortunately I have an overactive imagination, so I ended up with spiralling anxiety and worry, my brain wouldn't switch off and my usually normal blood pressure shot up, so I am now on medication for that!
Luckily I am fortunate to have some excellent friends, and have been able to talk to them about my feelings, and I have gradually started to do a bit of research - only on Macmillan and Lymphoma Action sites though, I was stung by the Google trap many years earlier when researching my Dad's Myeloma (he died when I was early 20s).
I have read up a bit now, and am starting to get my head around the way that Lymphoma differs from other types of cancers, I am trying to think of it as a chronic illness that may need treatment on occasion, it could be many months or years ... or maybe even not at all (one can hope). Or it could be next time I visit my consultant that things have changed. This is the uncertainty that I struggle with, and I can see that it is what a lot of people who post on here are worried about.
Anyway, in the short time since my diagnosis, the things that are helping me to not lose myself completely are: talking with people, giving myself little creative projects around the home, daily yoga first thing (free on YouTube), outdoor volunteering in nature, cooking delicious, healthy meals for myself and my family. I need to fill my time and feel useful still after losing my job last May, there is already too much time to overthink!
Next time I have an appointment at the hospital, I am going to pluck up the courage to visit the Maggie's centre there, as I think they host a regular Lymphoma support group. Believe it or not, I am not a person who finds it easy to accept help where it is offered, and I am definitely socially awkward. But I've never felt so out of control at times recently, so here goes... out of my comfort zone. Maybe it will actually do me some good!
Hi again Inthewoods good to see you put up a post.
Acceptance of the situation is an important milestone on the Lymphoma journey.
Developing a good accurate understanding of your type of Lymphoma is very important and the information available on the Lymphoma Action website is a good place to find this.
Along with the various Support Platforms available through Lymphoma Action…… most Maggie's Centres do indeed run a Heamatology Support Group.
You will see from my story with my two types of rare T-Cell NHLs I had to have significant treatments mainly due to me developing a second more aggressive type of T-Cell NHL in late 2013……….. but I am 9 years out from my last treatment and turned 69 in Nov past and I doing great.
