Hi, I’m Michael aged 48. I’ve just been diagnosed with Pre Myelofibrosis. My enlarged Spleen was spotted during a scan when I had Gall Bladder issues. It’s took 2 year’s to get the diagnosis. As you can all understand my world has just been turned upside down. I’m not sure what I’m hoping to get from this forum? Not sure what the future holds.
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Good morning @Witaz74 and welcome to the forum. It’s really great that you have posted. Sometimes it’s a really difficult thing to do but I wish I’d found the forum at the beginning of my journey with a diagnosis of lymphoma.
What I got was just a space to say how it really was for me. No judgement, no expectations and no worries about sharing how I really feel. I had great support around me but sharing with people who really understood how I was feeling was just invaluable.
I can imagine you are glad you have finally got a diagnosis. Two years is such a long time and waiting is so often the hardest part of our journeys. On the other hand, off course you feel like your world has been turned upside down - it’s such a lot to process. Have you got a good support network around you and a medical team who have explained everything?
There will be others with the same diagnosis who I’m sure will respond to your post.
My emotions were all over the place and that’s ok. Remember, the support line is there if you want to talk things through. Take it slow - if any questions pop in to your mind wrote them down ready for your next appointment.
Please take care X
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Dear Michael
Thank you for posting and welcome to the forum. It sounds like it has been in very long and stressful time for you. May I ask if you have had time with your Consultant and/or Clinical Nurse Specialist to discuss your diagnosis and what that means for you? If this has not happened yet I would suggest calling your allocated Clinical Nurse Specialist and talk things through.
Are you experiencing many symptoms Michael? If you yes, are they affecting your every day life?
The forum is a confidential, safe and supportive space where you can gain peer support from others with the same or a similar diagnosis to you. The Support Service Team at Blood Cancer UK are also here to provide support, information, sign posting and listening ear. If you would like to talk to us over the phone please do contact us: Blood cancer information and support by phone and email | Blood Cancer UK
In the meantime I will offer some resources below and do please keep in touch as we are here for you.
Kind regards
Gemma
Myelofibrosis (MF) | Blood Cancer UK
Myelofibrosis (MF) – MPN Voice
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Hi @Witaz74 a great big welcome to our forum.
@Nichola75 and @GemmaBloodCancerUK have given you brilliant responses.
I got the same things as they have said out of our forum.
I think when I was first diagnosed I felt I was the only person in the world with my diagnosis. I felt in a bubble with the world going on as normal around me.
I also felt that I have entered a world of medical jargon that I could not understand, 19 yrs later and most of it is still a foreign language.
Do you have any support?
You are now part of our forum family and I have found it often does not matter what our diagnosis is we seem to share similar thoughts, feelings an practicalities.
Be kind to yourself
You now are
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Hi Michael I was diagnosed with Primary Myelofibrosis in 2019. I am a relatively young 70 year old. For the first couple of years there was little or no impact other than what was going on in my own head and from a medical perspective a sort of watch and wait. My spleen did get bigger but no big deal and I was getting a bit of night sweats and cramps but all quite easy to endure as long as I could maintain the right state of mind. I guess that is key to it all. The illness moves forward and I am currently taking Ruxolitinib to manage the symptoms. The only cure is a stem transplant but with some heart issues I am not considered a suitable candidate for that route. Production of healthy red blood cells is the issue going forward and this is impacted by the disease as well as a side effect of the drugs. My great team are looking at some other trial drugs to try and improve the red blood issue. At present I pop in to the Churchill for some red blood transfusions every 3 or 4 weeks. Once again no big deal and I have a good few hours of peace. I have turned it into a little treat and always stop at Greggs on the way and get a sausage and bacon baguette. Not the healthiest option but it’s a little treat. I am lucky with the support of my wife and family. Stay positive and with a fair wind you have many good years to look forward to!
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Ifyoue haven’t already found it the mnpvoice website with its allied foerum healthunlocked has a very good section onmpns
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Our stories sound similar @Witaz74. I’m was 48 at diagnosis with pre-fibrotic myelofibrosis, originally diagnosed with ET from incidental blood tests and then myelofibrosis following a bone marrow biopsy a few months later. No doubt that it came as a bit of a shock and I think most of us here can relate to that.
I’m 2 years down the line now and other than regular bloods and reviews by the local hospital’s Haematology team, weekly self-administered Interferon injections and some fatigue, I’m doing ok. The two most challenging aspects for me are the fatigue, which can be difficult to manage and work around at times, and the need to be a more careful socially since Covid reared its ugly head. I can still get very resentful and low in mood when the fatigue stops me from doing something or makes a working day difficult, but that passes.
Remember that whatever you’re feeling is absolutely legitimate and that it’s ok. I guess what I’m saying is that with the support of your medical team, family & friends and forums like this, you’ll find your way to dealing with the change in your life and adapting to a way to manage it as best you can.
If nothing else, it’s good to know you’re not alone and others have similar experiences. Please don’t be afraid to reach out and speak to people both away from the internet and here, there’s no need to do any of it alone and no-one will judge you here. There are some wonderful people on the forum with a breadth of experiences, some of which will be relatable to you as time goes on. Take care, Michael.
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