Hello, I was diagnosed with Myelofibrosis a year ago after having had Polycethemia for 26years and taking Hydroxycarbamide to keep it under control which enabled me to lead a normal life enjoying long distance walking. Then in Feb 2019 I developed severe pains in my legs and could barely walk. I ended up having a third operation on my back which didn't really help and I tried to carry on with pain killers until I could bare it no more.
18 months ago I moved to be by the sea and have a new haematologist who is brilliant and diagnosed the MF. I'm on various medications including Ruxolitinib, morphine and just started weekly injections of Darbepoetin. At last the pain is under control, I feel very weary at times and sadly am unable to walk more than half a mile without being exhausted but it's worth it to be pain free.
I have lots of help and support and now I have Attendance Allowance I can afford a cleaner and monthly aromatherapy massages.
So my message to other sufferers is don't be afraid to ask for help and don't feel guilty about resting. It's easier for me as I live by myself but I need to be aware not to shut myself away as it can be an effort to contact friends at times.
Hi again Mumskaya and well done getting your post up.
I help out around our blood cancer groups. I don't have Myelofibrosis but I was diagnosed way back in 1999 at 43 years old with another rare, incurable type of Non Hodgkin’s Lymphoma (also MF but Mycosis Fungodes) eventually reaching Stage 4a in late 2013 so I do know this journey rather well although not necessarily some of the treatments you are on
Lets look for any MF group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups….. 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.
