I was diagnosed with ET/prefibrotic myelofibrosis, JAK2?positive in Sydney in May 2022. Like many people with rare blood cancers, my diagnosis didn’t come quickly or easily. It was the end of a long, painful, and confusing journey — one that changed my life in ways I never expected.
Back in May 2019, I had a routine left hip replacement. The surgery went well, but the physiotherapy that followed caused a severe trauma injury that set my recovery back months. I thought that was the end of it — but it turned out to be the beginning of something much bigger.
In June 2020, while resting on the sofa, I felt a mild pain in my left big toe. It wasn’t trauma pain. It resembled a nerve electrical type pain not a trauma pain. Over the next few weeks, it worsened and more frequent. I saw podiatrists, had X?rays, CT scans, ultrasounds, and an MRI.
By late 2020, the pain had moved into multiple toes on both feet. A neurologist ran every test imaginable — bloods, nerve conduction studies, EMG — nothing found. I was prescribed medications that did nothing. My platelet count of 450 was dismissed as “nothing to worry about” (as did my GP), and a referral to haematology was declined.
Throughout 2021, I kept working as a photographer, often in severe pain. Some days I could cope; other days were unbearable. Cortisone injections didn’t help.
By early 2022, the pain became so severe I could barely walk. I went to Emergency with my full medical history. A registrar incorrectly diagnosed an ingrown toenail and removed it. The nerve pain intensified over the following week to such a level I was contemplating suicide. I spent days on the sofa and unable to walk.
My neurologist told me there was nothing more he could do.
Something told me to revisit a podiatrist I’d seen years earlier. He listened to me for an hour. Then he said words that changed everything: “Nigel, you don’t have peripheral neuropathy. I think you have ET.”
He referred me to a physician.
In March 2022, I saw a doctor who truly saved my life. He prescribed Felodipine, and overnight the nerve pain disappeared. The ulcerated toe wound began healing, and I could walk again.
A haematologist confirmed the diagnosis: microvascular paraesthesia caused by enlarged platelets.
Apparently, my symptoms were extremely rare for ET — which I joke makes me “special.”
I started treatment with Hydroxyurea and Cartia, and gradually discontinued Felodipine.
After a year on Hydroxyurea, my PSA levels rose, and I was diagnosed with prostate cancer in March 2023. After two years on Hydroxyurea, in 2024, I developed a melanoma that required surgery.
When I moved from Sydney to Brisbane, my haematologist advised that if another melanoma occurred, I should switch from Hydroxyurea to Peg?Interferon.
As of August 2026, I’ve had no further melanoma, and I’m tolerating Hydroxyurea well. I continue to manage my diagnosis with regular monitoring and a lot more awareness than I had when this journey began.
My story is unusual. Sometimes the clues are subtle, sometimes they’re dramatic, and sometimes they’re hidden behind years of misdiagnosis.
