Hi, I was diagnosed in October this year with Secondary Myelofibrosis, it came as a huge shock, my platelets have been high since 2014 but not known why. My haematologist changed in May of last year and then decided to do a bone marrow biopsy for answers, I was told I had an infection in my bone marrow but not to be concerned. I was then referred to The Christies in Manchester where my consultant, who was so lovely and very empathetic hit me with I had blood cancer, I felt I'd been knocked down by a bus. I'm still trying to process it all, I've had an ultrasound scan this week due to pains near my spleen and my blood tests have now shown by blood isn't clotting. I seem to get my head round one thing and then something else happens. I'm so fatigued, never been so tired in all my life, people say they are tired beyond words but it's not until you get fatigue that you realise how bad it is.
Hi Niss and a very warm welcome to the Community but sorry to hear about your Myelofibrosis diagnoses.
Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. I have a a blood cancer but rather different from yours.
The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Myelofibrosis support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group click on this link> MDS/MPN/ET/PV/myelofibrosis (MF) then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Do get back to me if you need further help navigating the community.
