Having been diagnosed with ET at 26, I have finally published my memoir which describes my particular pathway with my MPN. It definitely does not describe everyone's story in that my experiences have been undeniably challenging and rather unfortunate but it's candid, honest and maybe helpful for some of you.
It is my aim to use this book to raise awareness on ET and MPNs in general - my GP and nurses really don't know much about it though I've lived with ET for 19 years...
It's available on Amazon.co.uk and is entitled Dying to Live: A Memoir, available in both paperback and ebook.
I'm Karol, by the way...
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Karol_Rua
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Well done to you, I will have a look for it. Hope you do well on raising awareness for Mpn's. How much is the book priced at? Got a Birthday and Christmas virtually together coming up, i'm sure if I hint enough, santa might leave me a copy! Atb,tina.🤗
Thanks for the tip. My own Mpn journey along the way with the horrific symptoms before diagnosis and 2 strokes along the way as added to the strong mindset I already possessed. Thanks again. I hope a lot more people show an interest. Good luck.tina.x🤗
Hi again Karol. Just to let you know, my daughter phoned me as she always does in the morning and I mentioned I'd like to read the book and as she as Amazon Prime, she orded the paperback version for me, which I prefer, it is being delivered tuesday. I see you only recently had it publisted on the 24th October. I look forward to giving you feedback on it. Could I just ask is Dr,Donnelly your Haematologist? Regards tina.🤗
I have just finished your refreshingly honest book.
It resonated with me in many ways.
Not least because my youngest son was born with heart disease and after his last surgery at 33 the emotions you express were recognizable but that story is not for this forum.
As for me my journey from ET to MDS to transfusion dependency feels like a walk in the park in comparison to what you have been through.
A very insightful book and I hope you get many readers.
Thank you Helen, your words are so kind. I aimed to be completely honest and aware that my experience may not resonate with everyone. I must be prepared for varying opinions I guess. We are all touched with difficulties, whether ourselves or our loved ones. The message is to really value your life and live every day.
Had my 3-monthly haematology appointment today and am anaemic so need iron. Besides that my bloods were good so deep breath out!
Wishing you all the best in your journey and I'm sure your own story is equally as dramatic when it's YOUR life that it's happening in. It's never a walk in the park!
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