I wondered if there is anyone out there in a similar position?
Back in 2016 I was told I had an increased lymphocyte count and this was following something I thought was glandular fever. I had a positive mono spot test, but was negative for glandular fever?Nothing happened, but the next time I had a blood test (because I had a strange fainting thing on holiday) again I was found to be out of range. At this point I was told I would get immunophenotyping, but there was a mess up at my GPs and they told me that I was ok, when in fact the hospital they’d sent my blood to had just lost my test (found this out at a later date). It was only when I got another test (I had quite a lot of throat and other infections) that they said that I ought to be referred again. Long story short, I ended up using my partner’s work health insurance and went privately to see a haematologist. I was told I had non-Hodgkins lymphoma - chronic, not acute. I was also told that it was similar to CLL, but wasn’t as it didn’t have the right markers (so I was already a bit confused! Is it lymphoma or leukaemia?). My current haematologist that I see is friendly, but has done various tests and he said it is rare and chronic. However, because there is no particular support group and it doesn’t look like I will ever get a definitive diagnosis, I feel a bit alone with it. A lot of the time I have different things written about it as a title - marginal cell lymphoma in leukaemic phase was one of the last titles. A lot of people with chronic blood cancer seem older than me or have gone through chemotherapy. I feel like a fraud most of the time for being put in the CEV shielding category. People I know, once they realised it wasn’t an acute leukaemia/lymphoma aren’t really that interested and seem baffled by the fact that I’m not on chemotherapy. It’s quite an isolating experience. I wondered if there is anyone else out there who is similarly confused? Thank you