Myelofibrosis

Hello everyone out there,

I am new to this so not sure where to start. I have been diagnosed with myelofibrosis. Anyone have the same? I'm 57 years old with an amazing wonderful husband of 36 years and 6 amazing wonderful children.

i am surrounded by love in great quantities but would love to meet someone out there who has this blasted illness so we can share stories.

Send love and hugs to everyone.

  • Hi  and welcome to the Online Community although I am so sorry to hear about myelofibrosis diagnosis.

    A cancer journey can be so stressful and challenging in many ways but I do hope you find the community a safe place to get support and ask your questions.

    The New to Community is like our reception desk where you can be signpost to our various cancer support groups and other services so can I recommend that you consider joining our supportive MDS/MPN/ET/PV/myelofibrosis (MF) group. This will be a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.

    If you'd like to connect in with a group click on the Green link I have created above. Then once the page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

    You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go.

    You could copy and paste the text from this post into your new post and as always you can reply to existing ‘Discussions’ by click [reply].

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    You may also find our Cancer Nurse Team in our Ask an Expert section helpful but do allow a few working days for a reply.

    To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section

    Talking to people face to face when on a cancer journey (patient or family) can be very helpful but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and provide support for all the family.

    Always around if you need further help in navigating the community.

    All the very best ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

    Click to see how to add details to your profile