I have intermediate 1 Myelofibrosis . Upcoming stem cell transplant recommended and I’m terrified . How sick will this treatment make me , will I survive, will it come back??? So many fears
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Oh @SuZiLipZ a great big warm welcome and I really felt for you reading your post.
Thanks so much for being so honest.
I think living with the unknown is the scariest thing, but I have accepted it over the last 20 years.
I think it is worth asking your specialist nurse, if you have one, or your consultant these questions, although I think that even they might not be able to give you exact answers as we are all unique, special people, but they know you best.
I always tell my medical team if I am scared.
We will all be here for you on your forum.
The Blood Cancer UK is also there for you on 0808 2080 888.
I found that some talking therapy via my GP or Macmillan Cancer Care helped me get my head round it all.
Please do keep posting as I look forward to hearing more about you and how you are getting on.
Be ever so kind to yourself and really look after yourself
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Thank you so much for your kind and supportive message. Suzi
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Thank you for your kind and supportive message. I need that so much right now. SuZi
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Hi @SuZiLipZ and welcome to the forum.
I can only imagine how nervous and scared you must be.
The concerns about side effects of treatment is understandable. Have you had the opportunity to ask all the questions you have?
I’m glad you have you found us as you now have the support of your forum family and I know there will be others who can share their experiences.
Please keep posting and be kind to yourself X
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Dear @SuZiLipZ,
Welcome to our forum, although I am sorry for the reasons that led you here.
I can hear how frightened you are, I am glad you felt able to come here and share this with us.
I would encourage the same as @Nichola75, it is so important that you feel as prepared as you possibly can. Please do write all of your questions down to take to your team in advance of your admission to hospital.
We would also be very happy to talk through the stem cell process, if you wanted to give us a call our phoneline is open - 0808 208 0888.
I think you will have lots of support coming your way from our community here and some lived experience will help you massively.
Take good Care,
Heidi J (Support Services Nurse)
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I have had my first consultation and was able to ask many questions but individual experiences still leave a lot of questions no one can really answer. Im in amazing health with no symptoms to speak of so hoping this will help me go thru transplant easier but I know its still going to be rough and the thought of it not going well is very stressful
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Good morning.
I’m glad the appointment gave you the opportunity to ask what you needed to. It’s really hard isn’t it because no one journey is the same and side effects can vary so much.
As you say, you are in good health at the moment which is so important.
What are the next steps?
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Plan is transplant in January. Just had my HLA testing then the search for a suitable donor. Not knowing is the difficult part and being out of your control is really hard. Im a high energy vivacious woman and cant imagine feeling awful and all the long term side affects that could occur. I feel dammed if I do and dammed if I dont!
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Thank you so much, I live in the USA so Ill have to check with my phone service about making a out of country call but that would be a great resource for sure. I feel like I have a lot of information but the unknown of how individually I will respond to treatment is the anxiety kicker for me
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I think feeling out of control is the hardest part. Good advice I got was try to find the things you can control and focus on those.
Hopefully, you’ll get back to that vivacious high energy women really quickly, maybe even more so than you were before X
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Hi @SuZiLipZ For me having a plan is important, but it is the things I cannot control or are unknown that I really find hard.
I reckon being a high energy vivacious woman is a good start.
Feeling damned if you do or don’t must feel horrible.
Thanks for describing everything so well.
I find sometimes just typing out my confusion on here actually really helps me in some way.
Be very kind to yourself and perhaps write down all your fears, questions and practicalities for your specialist nurse or consultant.
Please do let us know how you are getting on.