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“My symptoms were common, but something wasn’t right”
For years before my diagnosis, I didn’t feel quite right, but I could never put my finger on it. I was constantly tired, had bone pain, headaches, and ringing in my ears. I also had raised platelets, which doctors monitored, but no one ever suggested it might be something more serious. I went back and forth to the GP, had test after test, but blood cancer was never mentioned.
It wasn’t until I had a scan for gallstones that something clicked. They found my spleen was enlarged, which finally led to a referral to haematology. Things moved quickly after that more blood tests, genetic testing, and another scan, which revealed a clot in my portal vein. I was sent to A&E and given my diagnosis the next day.
I was initially diagnosed with Essential Thrombocythaemia (ET). My dad has Polycythaemia Vera (PV), so I wasn’t entirely surprised, but it was still a shock. I went into survival mode, trying to focus on what needed to happen next, rather than what it all meant long term.
I thought I was coping well, but about three months later, it all hit me. This wasn’t something I’d recover from. Around the same time, I started counselling through work, which helped me come to terms with everything. Then I received news that the disease had progressed from ET to Myelofibrosis (MF) and therefore I had to start processing it all over again.
Finding the right treatment took time. I started with Hydroxycarbamide, but the side effects (fatigue, nausea, a painful facial rash) left me physically and mentally drained. I had to take time off work and eventually switched to Peg-interferon, and later to Ruxolitinib. It took a while to get the dose right, but I’m now stable, and my spleen has even shrunk a little.
These days, I feel stronger than I have in years. I stay active with daily walks, CrossFit classes, and time outdoors with my son. Walking is my way to reset, reflect, and stay grounded. I also work in research, which gives me purpose, I feel like I’m contributing to a better future for others affected by blood cancer.
Raising awareness matters
If there’s one thing I want people to take away from my story, it’s that blood cancer isn’t always obvious. My symptoms headaches, fatigue, bone pain were common, even vague. But they were persistent. If you feel like something isn’t quite right, don’t ignore it, speak to your GP and ask for a blood test.
And if you’ve just been diagnosed, please know this: you’re not alone. There are support groups, forums, charities like Leukaemia Care, and people who understand what you’re going through. Talk to your loved ones. Talk to strangers online if that feels easier. Just don’t bottle it up.
We need to keep raising awareness of blood cancer, its symptoms, the realities, and the stories behind them. Stories like mine.