Hi Everyone

I'm not sure if I am writing this in the correct place or whatever.  I just know that I would really like to be able to talk to people who have been diagnosed with ET and how it has affected them - the meds etc or had similar experiences.  I feel quite alone, in my own bubble, because I don't really know what is going on or know anyone who has experienced this situation.  I already suffer from severe and enduring mental ill health and this is making things 100% worse because it's the unknown and I'm finding I'm cutting myself off from everyone because I don't know what is happening or going to happen.

What's going on?:  I had a major pulmonary embolism in March 2019, blocking 70% of my lungs.  I also did not have any of the normal pre-cursors ie long flight, op, bedrest etc. I was put on Warfarin, attended the hospital clinic for 6 months and then told I was being discharged to my GP.  I asked when I was going to see the consultant because I had been told, when in hospital, that I would before being dischaged back to my GP, due to the unknown reason for the clot. I waited and waited, saw no-one, just carried on taking Warfarin by myself, with no one to check me.  Eventually, I spoke to my GP who knew nothing and hadn't even received a letter, so I chased the hospital clinic.  I had been 'lost' in the system!  By this time, it was early March '20.  Eventually, I got to speak, on the phone (due to lock-down), to a consultant haematologist - they told me to go and have some blood tests.  1 week later, I got a call to say I had a high platelet count and a slightly raised Jak2 result.  I was then told to go and have another blood test and they would send it to the regional genealogy centre - they did and it came back negative this time for Jak2. However, I was then told to have a bone marrow biopsy.  Had this and was told results in a fortnight - a month later, I get a call to say that some of my results were still not back but the ones that were told them that I needed to attend the Cancer Clinic and would be put on oral chemo.  I am due at the clinic on the 15th.

I haven't been given a formal diagnosis.  I don't know what to expect.  What is happening?  I don't really know what is wrong because no one has actually told me.  I am assuming it's ET from what I have tried to find out online, but I don't really know.  Having been told that I am going to be put on chemo automatically screams cancer hence my searches into what's wrong.

Any helpful support, advice or just about anything, would be really appreciated.

Thank you for reading this if you got this far! Ax