MPN Memoir...

[Karol_Rua]

Hello everyone,

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...

[mhos61]

Well done to you Karol_Rua. I will definitely look this up.

Best Wishes

Mary

[Tico]

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.🤗

[Karol_Rua in reply to Tico]

Hi Tico, the paperback is £11 and ebook version £5. It's not easy reading though as I was hit with unexpected side effects...☹

Thank you for your interest 🤗😊

Best wishes, Karol_Rua

[Tico in reply to Karol_Rua]

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🤗

[Karol_Rua in reply to Tico]

Thank you! 🤗 I too experienced a very very extensive clotting episode at 31...with unanticipated consequences.

How lucky some ET people are with few or minor symptoms...🤔

K

[Tico in reply to Karol_Rua]

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.🤗

[Karol_Rua in reply to Tico]

Thank you so much, Tina! Hope it's somewhat enjoyable for you...

No, Dr Donnelly is me!! I am not a medical doctor, but I have my doctorate in science...

Huge thanks again, K

[nivana]

Well done. I will be purchasing the paperback version. Best wishes

[Karol_Rua in reply to nivana]

Thank you ever so much for your support, K 🌻

[Helen1952]

Have downloaded it to my kindle and finished the first chapter. Xx

[Karol_Rua in reply to Helen1952]

That's brilliant, thank you sincerely for your support 🦄

[mhos61]

I have ordered a copy today. Look forward to reading this.

Maryx

[Karol_Rua in reply to mhos61]

Brilliant, thank you ever so much ♥️

[Wyebird]

Fab idea especially as you are so young. Love the title. It will go on my Christmas list

[Helen1952]

Dear Karol

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.

Helen xx

[Karol_Rua in reply to Helen1952]

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!

Mind yourself and thank you sincerely,

Karol