Sorry if this is a bit depressing & long. I normally just get on with things and patiently find the good but am struggling lately. I have ET (diagnosed 18 yrs ago, Watch & Wait), I have a lot of fatigue, headaches, dizziness, vertigo, bone pain, insomnia, all sorts, none of which GPs ever seem to realise are common with ET. Most argue with me and tell me ET isn’t a blood cancer, or I have no COVID risks or I’m mistaken to think there are any symptoms. Because I also have health anxiety, I’ve even had doctors tut and huff and say “Do you actually have a diagnosis?” (they hadn’t transferred my medical records properly). Needless to say, such attitudes don’t help my health anxiety!
I went against their advice not to shield (& am very glad I did now!), I had to fight tooth & nail to get my third dose, with one GP reducing me to tears over a 40 minute phone call, likening my ET to “any other chronic condition”. When I tried to offer research from BCUK and elsewhere, she refused to look because she “can’t be expected to research everyone’s conditions.” I got it sorted in the end (different GP) and got the 4th dose/booster no problem but it all feels so exhausting and so invalidating. I realise ET “isn’t as bad” as a lot of other blood cancers (and I’m hardly new to it) but I’m made to feel practically as though ET isn’t real, especially since I’m Watch & Wait!
I am a totally single, unsupported parent of a child with autism, which is another reason for me to stay well. My ‘light at the end of the tunnel’ has been these anti-virals being introduced, which I felt would let me do things like go to the dentist with some confidence that if I got ill I would most likely be okay - only now I’ve found out I don’t qualify. This is great news in that it means I’m not as vulnerable as some other people, but I also feel sideswiped, abandoned and MORE vulnerable since now there’s nothing to fall back on and it sounds like vaccine immunity wears off relatively quickly. I know there’s the PANORAMIC trial but that doesn’t feel like something I can rely on.
So I’m going to keep shielding and hoping the anti-viral scheme is expanded to include people with ET who are not on CAR-T or SACT. Which is okay most of the time - I write, read, disco dance for fitness, and try to use the whole thing to get better at living in the now, appreciating what I have around me and finding joy in small things and home. I’m well set-up with deliveries etc and am reeeally lucky in so many ways. Just after 18 yrs of ET and 2 yrs of pandemic, I sometimes feel so utterly exhausted by it all. I end up in tears just trying to wash up.
Sorry for the moan. I realise the pandemic has been hard for most and awful for many. I don’t think my woes are any more than anyone else’s, and I’m sorry to complain about ET. I’ve often been told “if you’re gonna get blood cancer, ET’s the one to get.” It just really feels lonely & alienating from time to time. “ET” often feels about right.