Thank you so much for this post (apologize in advance as my reply may be a lengthy one)! I’ve been preparing myself to post here for a while now, but just never got round to it, and now I’ve seen your post I felt it’s certainly a sign
I’ve been diagnosed with ET in September 2022, and like for many others, it’s taken a while to actually get the official diagnosis (I’ve suspected it for a while by then). My story started in March 2022. I was feeling rather unwell (couldn’t eat and didn’t dare to be away from the toilet longer than 10 mins, which made working and just existing rather difficult), so I’ve had an appointment with a GP, who has kindly organized some tests (blood test included) and due to the results of those tests, I got referred to haematology (platelet count was 1600) and gastroenterology. The haematology referral was cancelled as they believed this is a gastro issue, and gastroenterology has given me a date for a colonoscopy for July. There was no way I could wait that long, so I’ve arranged treatment for myself abroad in the first week of May. There I have been diagnosed with ulcerative colitis, received medication (steroids etc.) and information about the condition etc. and I was very grateful I knew what I was dealing with and hoped that as a result my platelet count will decrease (although I was somewhat suspicious as I did not think that even UC could elevate platelets that much). 2 weeks after the diagnosis I had a check-up with the gastroenterologist abroad, and she’s asked for a blood test. The platelet count was 900, so she suggested that once back in the UK (I had to come back as I’ve used up a lot of my holidays for this trip) I needed to see a haematologist. That of course made me do some research and gather information (my brother in law is a surgeon and I, by default have a very inquisitive mind), and whilst I’ve been careful not to self diagnose ,I started to be more alert when it came to detecting possible symptoms. Once back in the UK (June)I’ve shared my results from abroad with my GP and they’ve kindly arranged for another blood test, and around August re-referred me to haematology. (July was spent with trying to get myself back in the system in the UK, because whilst I thought I was doing the right thing by seeking quicker diagnosis with the UC abroad, as it was done abroad, despite my medical documents from abroad, I didn’t have care assigned to me in the UK, so it was a monthly struggle to get my medication + I also had a lump in my breast that needed checking which thankfully turned out to be benign in the end). After the initial ‘basic’ blood test, I had a consultation with the haematologist and he’s ordered a more complex test to be done (which was to look for JAK, or CALR etc. mutations). When the results have arrived I had another consultation, and I remember walking to the hospital…I was very hopeful that no mutation was found, but deep down I knew one doesn’t just happen to have such high platelet count for a sustained period of time…so when I entered the room and the haematologist has explained that I have a CALR mutation, I was not even shocked…just disappointed. I’ve then been given a blood cancer booklet to read. I read it, just to see if there was any new information in it, but as I say I will have read a lot about this topic months ago, so I was aware of the symptoms etc. but the reference to supporting organizations was very handy, as up until this point I have not even considered anything else (forums, groups etc.), apart from the factual information regarding what’s actually happening in the cells when this condition occurs, what is the process, what are the remedies/treatment plans etc. A few days later I’ve also realized that whilst I’ve been given the booklet and we’ve discussed my gene mutation we’ve actually not called my condition by its name. So I thought I had ET, but then I was wondering if I really do, so on the next consultation I’ve asked for confirmation and my haematologist has kindly confirmed that it was ET indeed. I was on watch and wait till now (and very much hoped I’d stay there for years to come) but my platelets are just steadily increasing (currently at 1300) so we are now considering some form of treatment come the end of May. Unless the platelets decrease (which I keep telling them every day to stop misbehaving ). My haematologist is brilliant I have to say because somehow, even without many words we understand each other. We discuss my results, I’ve got access to it in the EPR system, and so as I saw the trend being an increasing one I’ve already been thinking about treatment options and I thought if it came to it I would go for interferon, and during my last consultation that’s what my haematologist had on his screen, so as soon as I saw (and he’s also suggested it verbally) I was relieved.
Getting others to understand what’s happening though is…I have to say a bit tricky. I’m trying to keep it simple (as we know there’s a lot of things regarding these conditions which require some dwelling into the detail…it’s not like someone with a broken leg where people can see what’s wrong immediately), but it’s a bit of a balancing act really. Some people that I know are worriers, so with them I don’t even call it a blood cancer, I just say it’s ET, and then they say they’ve always known I’m a bit of an alien and I find that helps to take the edge of it Others that I know are level headed, I try to explain a bit more, but even for them because I look fine (and actually I am fine apart from a bit of fatigue here and there etc.) it can be a challenge to really understand what’s happening, or even why I am sharing if I’m fine (they don’t mean it negatively just aren’t sure really what they can do, or if they should do anything or how to help etc. but that’s also probably down to me too because my big worry is that I may make people uncomfortable, or that they think I let them know about my diagnosis because I expect them to do something which cannot be further from the truth…it really is just because I’m sharing…I’m a sharer :). So in the end I stopped telling people and I found solace in coming on this forum and reading the experiences from others…and I was and am really grateful for this forum, because it helped me so much to feel…understood…and included…even if I haven’t posted before…reading the topics and posts from others who are going through similar things, just certainly made me feel like being part of a tribe (whilst before the forum it felt more like a warrior in a jungle just cutting that dense vegetation every day ). Interestingly though…since Tom Young has shared his experiences on BBC Morning news yesterday I’ve had friends message me , letting me know that they weren’t even aware that there are so many people how suffer a type of blood cancer and I felt hearing someone talk about it on TV (linking it also to a very personal experience) was just an eye opener for a lot of people.
So I believe all the points you’ve mentioned in your post are very valid and I certainly can identify with all of them.
Thank you very much for the patience (to read my story) and also for this really supportive community. It’s really helped me a lot having access to this forum, personally as well as I found it very informative and just a lovely platform full of lovely people.