Hi and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.
I don't have Myelofibrosis but I was diagnosed way back in 1999 with another rare, incurable type of blood cancer Stage 4a so I do know this journey rather well.
In the early days it’s all about understanding and once you get more information and talk with others the journey will get more understandable.
Let's look for the members with this condition to pick up on your post, you can also look through all the group threads (hit the group name and scroll down) and as always you can hit reply to any post.
Talking to people face to face can help a lot 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 each centre do run monthly Heamatology Support Groups most are online at the moment….. the one i attend does have a few folks with Myelofibrosis in it so worth checking.
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. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
You may also want to check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk
All the very best.
Hi again and good that you feel less isolated. When I was diagnosed with my very rare (7 in a million) type of Non Hodgkin's Lymphoma there was no Google and it actually took 16 years before I meet or even talked with someone with the same condition as myself.
This is not the case now as there are many ways to connect now.
I must have not had enough coffee this morning as I totally missed that I had not put up a link for the best group for you.
The Community is divided into support groups (discussion rooms) so can I recommend you join our supportive MDS/MPN/ET/PV/myelofibrosis (MF) support group. This is a safe place to talk to others with 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 (Bold) link I have created above. Once the group 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.
Always around.
