Hi
Diagnosed on Wednesday with Essential thrombocythemia (ET). Came completely out the blue. Thought I was just having a routine once over.
I have a newborn daughter and trying not to doom cloud everything. I really need help understanding what lifestyle is best to live with this so I can plan effectively.
On a brighter note, at least I now have a decent excuse for missing the Christmas party at work.
Conor
Hi Conor.
I was diagnosed in Feb this year. Just had a bone marrow biopsy and next appointment in January.
It’s all very surreal at the beginning it once you’ve see. Your constant a few times you’ll relax a bit.
Mine call it a condition……not the word beginning with C. I’ve not told my adult children as they will just hear that word and think the worst.
At the moment I’ve been out on aspirin and from what I’m told in a couple of years they will put me on something else, well that unless the bone biopsy tells them it needs to be given sooner.
Where abouts do you live in the country? I’m Hampshire.
Hi @Conrossmac I think I have really answered your natural concerns.
You say that you were diagnosed out of the blue, so you are the same person with the same lifestyle as you had before the diagnosis.
Perhaps just take it a day at a time, although I note you want to plan effectively.
I presume you will have a medical appointment some time and you will know more at that point.
Perhaps as all these questions come to mind in might be worth writing them down for that appointment.
Please do let us know how you get on and be ever so kind to yourself
Hello there @Conrossmac, welcome to the forum. I saw your other post and I’m really so sorry to read of your diagnosis—on your birthday?! Grim timing, but here’s to many more birthdays ahead!
Last year I was diagnosed with Polycythaemia vera (PV), a closely related Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET). Perhaps you’d like to read the Blood Cancer UK information about our rare little family of blood cancers: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Here’s the BCUK information about Essential thrombocythemia (ET) specifically: Essential thrombocythaemia | Blood Cancer UK
I read that you’re an active young person and wanted to share how my haematologist reassures me about my own exercise. I’m also considered a young blood cancer survivor and it took me some time to feel less anxious and overwhelmed by my diagnosis. There is a lot of outdated information at the end of a quick google, and sadly much of it is inaccurate and gives us prognoses that are just totally wrong.
My haematologist told me something that gives me a lot of hope—that we are more likely to die with Essential thrombocythemia (ET) or Polycythaemia vera (PV) than from them. We can live into normal old age with some adaptations and regular checkups of our blood.
So I’d say keep hold of your humour (I, too, am glad to miss christmas parties hahaha) and keep notes of anything that comes up. Take these questions to your haematologist who should answer them using current understanding of Essential thrombocythemia (ET) and any treatments you’ll need.
I’m a keen hiker and was worried I’d not be able to get out into the hills after diagnosis as I kept reading about cancer-related fatigue. I’m not going to lie… After starting daily hydroxyurea I developed pretty disabling fatigue which stopped me getting outside so much initially. Instead, I read some research showing slow exercise like yoga, tai chi and Pilates is really helpful for increasing energy when fatigue is bad, so I started doing yoga at home in front of the telly. As my body got used to the chemotherapy my fatigue faded. Now I’m back to hiking plus I have a yoga practice too! Fitter then pre-diagnosis, somehow.
So I’d say try not to think of losing your previous interests, but maybe consider adapting them for now while you get used to your diagnosis and any treatments you might have. Might be worth bearing in mind how exhausting raising your child will be too, and how those responsibilities will take up time and energy, regardless of the Essential thrombocythemia (ET) or exercise.
Really glad you found the forum @Conrossmac! Have a look around as there are many folks here living with Essential thrombocythemia (ET) and other Myeloproliferative neoplasms (MPN) who have shared how they exercise, eat healthily and so on.
Wow what a cracking read. Was so happy to hear what your haemo said. I’ve been getting a lot of hope the last couple days. I’ll be back on the squash court in no time.
I used to do a lot of yoga so maybe I’ll pick that back up as a tide over.
Thanks for your support. Let’s get hiking sometime…always fancied doing the west highland way myself.
Erica, I have seen you answer so many questions. You are helping so many people. Thank you.
My wife actually said that to me today, I am who I was before the diagnosis. 
feeling way better today.
Howdy. I live in Northumberland. Thanks for your message. Feeling the chirpier the more I hear from other people!!
Oh I love this @Conrossmac! I’m so glad to have shared anything that would offer hope, especially at this early delicate stage after diagnosis.
Funny that you already did yoga, it’s really been so helpful for me and sounds like it could be for you again. I’m on a different west coast to you or else I’d love to go hiking in the Highlands 
If I may be so bold, I think being informed about these blood cancers can help take the edge off some of the worst worries. Knowing your haematologist is there to support you in all ways, not just to medicate you, might be a relief too. Really do lean on their expertise and ask them anything, and in the meantime I hope you feel you can share whatever you need here. And yes, isn’t @Erica amazing?!
Do keep us posted about how you get on @Conrossmac!