Thank you again to everyone for taking the time to reply and if you are still reading, thank you even more. It is so useful to have everyone's experience and advice. I know it also helps me to get my head around it.
So I moved up North at the start of the year and transferred my care. I was diagnosed with ET in 2012 and had yearly monitoring consultations with just asprin. My platelet count never went over 600 and went up or down by around 80 over that time. At age 60 I agreed to start Hydroxycarbamide and my platelets dropped to around 300 ish. My new consultant team looked to confirm my ET diagnosis with a PCR test but were unable to do so. Perhaps this was due to my low alelle burden or the nature of the test? However, the recent BMB has confirmed ET JAK2 and I continue to take Hydroxycarbamide. So everything is as it was.
I realise how complicated my feelings are about this experience are. I am so grateful to my team for their throughness and care; it is easy just to carry on giving patients the drugs. I know how lucky I am to be well but if I am honest, there was a little bit of me that hoped it had all gone away / was a mistake and I no longer had the cancer! So, from now on, I am going to take my consultant's final piece of advice which is to keep as healthy as possible because, as she explained, she could do nothing about my genes but staying healthy would allow me to respond better to anything else. Thank you to you all for your support which I have really valued over the last few months: to be honest it has kept me going. Thank you for reading this post where I get my head round it and for all your kindness. Stay well and look after yourselves.