Mylofibrosis confirmed today

Hi all. Yes, its confirmed, I have mylofibrosis and need a bone marrow transplant. I am scared and really don’t know what’s in store for me. Next appointment on Wednesday.


Hi @CarolCull I’m so sorry you’re going through what sounds like such a tough time. Please know we’re here for you on the support line if you want to talk things through, at any point. Our number is 0808 2080 888.
I’m sure there are people on this forum who have experienced similar things to what you’re going through right now who will hopefully share their experiences, but I just wanted to let you know we have an information booklet on bone marrow transplants, here which you can order for free - Blood stem cell and bone marrow transplants booklet | Blood Cancer UK Shop
We also have a thread on here where people have shared their personal experiences of a transplant - Awaiting or considering or had a stem cell transplant, a place to share here - Going through treatment - Blood Cancer UK Online Community Forum

We have everything crossed everything goes as well as it can for you.


Hi @CarolCull I am so sorry I cannot imagine how you are thinking and feeling right now.
Yes, I bet the unknown and whirlwind you are now on is scary.
@Alice_BloodCancerUK has given you a brilliant response so all I can add is be very kind to yourself
I hope others can share their experiences.
I will be thinking of you on Wednesday. Perhaps write down any fears and questions you might want to ask.
I have never learnt to speak medical speak so if you do not understand anything do ask for clarification,
We are here for you to say how it really is for you and please do let us know how you get on Wednesday, look after yourself

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