Im just looking for a bit of support/advice around this little-known disease.
My Mother was diagnosed with polycythemia vera in 2014. this has been managed reasonably well however recently my mam noticed she was becoming very short of breath and had a pain in her side (caused by her enlarged spleen). She's been diagnosed with Myleofibrosis which in itself was a huge blow to the family as my mother currently takes care of her own mother, and provides child care for myself and my sister for our young children. We werent made aware nor did we do any of our own research when she was initially diagnosed in 2014 so we had no idea that this is a progressive disease, or that its even a form of blood cancer! My mam is tiny, she weighs 7 stone 4lbs and has always been small. Shes now taking medication prescribed for myleofibrosis (jakavi) a.k.a Ruxolitinib while she waits for (hopefully) a stem cell transplant. The biggest issue my mam is facing (this may seem so small to many of you and I'd appreciate it if any criticisms or negativity could be kept to yourself) is that this medication is putting weight on her quickly. She's gained 4lbs this week and the same last week too. She's never been a gym-fanatic or ever even exercised apart from housework and taking the kids out. Im looking for advice on how I can help her to 1) maintain some sort of active lifestyle throughout all of the changes shes experiencing and 2) hopefully get some perspective from people who have experienced this first hand. Thanks for taking the time to read