I had something of a heads-up about chronic rare blood cancers, because my darling late Mum had one form, polycythaemia rubra vera (PV), which then progressed to another, myelofibrosis (MF). Even though at that time these illnesses, collectively called myeloproliferative neoplasms (MPNs), weren’t categorised as cancers, to my parents, siblings and me they certainly seemed like it.
MPNs occur when a gene mutates, causing the bone marrow to begin uncontrollably creating either too many red blood cells, platelets, or stem cells, and the standard treatment is ongoing chemotherapy. They’re very uncommon, happen more in people aged 60+, and so far no genetic hereditary link has been discovered. So, when aged 33, I suddenly started presenting with one of the same symptoms that my Mum had experienced, it took four years of seeing multiple doctors before I was diagnosed with another type of MPN. Mine is called essential thrombocythaemia, ET for short, and it means I make too many platelets. If you’ve ever put the wrong type of fuel into a vehicle’s tank, I am that vehicle, except I can’t have my tank drained and refilled with the correct fuel by a vehicle rescue service.
My diagnosis journey included GPs persistently ignoring abnormal blood test results, dismissing my symptoms, delivering incorrect diagnoses and refusing my requests for further investigation. After a suspected transient ischemic attack (TIA, which turned out to be a hemiplegic migraine), I was finally referred to haematology. It was a massive relief to eventually have the correct diagnosis, which was confirmed by testing positive for a mutated JaK2 cell.
So far, there’s no cure for MPNs. I’ve heard ET described as sludge blood, and a lazy cousin of leukaemia, and in my experience it can give me any number of side effects, including but not limited to chronic fatigue, migraines (which sometimes immobilise one side of my face), heart palpitations, chest pains, breathlessness, dizziness, uncontrollable body temperature fluctuations, brain fog, memory lapses, visual disturbances and hallucinations, spleen pain, superficial vein thromboses, and the most common blood cancer side effect which is a flu-like feeling. I’ve been told by an MPN specialist that my greatest health risk is a thrombosis leading to fatal stroke or heart attack.
This may sound dismal, but actually I am lucky. I don’t have an acute, galloping form of blood cancer. Because of my age and a lack of co-morbidities other than mild asthma, I’m deemed a low-risk patient, so my only treatments are daily baby aspirins and meds to control the migraines, along with regular check-ups with the haematology team at my local hospital. With luck my illness won’t progress to MF, and I won’t need to go onto the chemo treatment.
In 2005 MPNs were classified as blood cancers, which means any medications for them and related side-effects are free of charge, and my healthcare is provided by the NHS. I’m also eligible for support from cancer charities, and I’m protected at work by disability discrimination laws.
My husband couldn’t be more supportive, I have an amazing twin sister who is always there for me, and a large and loving group of friends. My husband and I live a modest rural life with a bunch of rescue hens, a much-loved dog, and half an acre of land. We can just about manage for me not to have to work, and when my symptoms let me, I love gardening, reading, watching films, writing, drawing, catching up with my friends, cooking, and (slowly) walking the dog. I don’t know if I’ll ever be able to return to my work as a creative writing tutor in the Adult Education sector, or to my voluntary work as a classroom assistant for refugees; my job now is to remain as well as I can. I am more than just surviving with this cancer. I am living with it in the best way that I can, and I’m so grateful for what I have.