It has taken me some time to write this... but I hope my husband’s journey with MPN is perceived overall a message hope to others. He was diagnosed with PV aged 46 and had a great quality of life for 28 years ,needing only phlebotomy -initially weekly but eventually every six weeks or so . He progressed to Myelofibrosis aged 74 and had a reasonable quality of life for a few years. Many people had no idea he had blood cancer and looked incredulous if we mentioned it. We had a very active social life and enjoyed walking. He gradually had to pace himself and manage his fatigue which enabled him to enjoy life very much. Starting Ruxolitinib after a couple of years was a life saver but in the last two years things became more challenging and eventually he became transfusion dependent aged 80. It was only in the last six weeks of his life that the disease became more troublesome. Sadly he passed away in December and would’ve been 81 this month. I am thankful for all the wonderful years we had together.
He never worried about his illness and was not interested in being given a lot of information. I wanted to know as much as possible and I’m certain my knowledge saved him on a few occasions eg. getting to hospital promptly when there were signs of infection and being given intravenous antibiotics. My advice to others is to be informed and proactive in seeking treatment if needed but endeavour not to let worries about the future spoil the precious time you have. It is challenging living with uncertainty but crucial to live in the moment and enjoy the life you have to the full.