I live in the Fenlands having moved with my husband from London with our 14 cats. I was diagnosed in 2023 with Essential thrombocythemia (ET) JAK2 mutant Myeloproliferative neoplasms (MPN) with differential between prefibrotic MF and Essential thrombocythemia (ET) likely pathogenic ASXL1 frameshift variant. I have been on Hydrea - Besremi - and now Ropeg Pegasys 90mcg weekly and 75mg Aspirin.

I can’t say I feel great the fatigue - bone pain and headaches get me down. Most of the time I have no energy. I love gardening, arts and crafts and sewing but since the move have not done much. I do have mobility issues too due to major spinal surgeries and two knee replacement surgeries. My lower back is failing again but I am inoperable at this stage I also need shoulder surgery this too is on hold. I try hard to keep positive and always remember my fathers words ‘Keep Smiling Darling’