Tuomo, Finland

How did it start?

I had years of unexplained symptoms: bone and joint paint, visual migraine, brainfog, fatique, mild fever, but nothing was found. Eventually, after a car accident and following controls, I said to my doctor - hey, my platelet count has been increasing slowly for years and same time my hemoglobin is declining. I wonder if everything is ok? And that's when I got my self to hamatologist. More test and then I got myself a MPN diagnose. And for me, this was a relief. There was actually something physical going on. The symptoms had a cause.

What was the biggest challenge(s) in your experience with cancer?

The biggest challenge with MPN is the "let's wait and see how it goes" philosophy. MPN's are a group of blood cancers - essential trombosytemia, polysytemia vera and myelofibrosis. ET and PV are most likely slowly proceeding chronic cancers. Myelofibrosis may also stay stable for a very long period. The symptoms vary by patient, and your labs don't tell how you feel. Some patients have symptom burden, some don't. For me, the challenge is to stay in "normal" working condition, while I'm just in my 50's and still in work life.

What helped you most?

Well... In summer 2022 I was in a car accident. A car drove in to my car on a highway. I got only bruises, the opposite was later passed in a tensive care unit. I "dodged a bullet" so to say. But this changed the way I see life. So diagnose was not a shock for me, It was also a relief, while I had had those unexplained symptoms for so long.

I have strong resilience. I don't worry too much. I try to enjoy life as much as possible. I eat well and healhy now. I do some sports.

What was your experience of the healthcare system?

In my country MPN patients are not considered as a "real" cancer patients. And that has the down side. Lack of latest treatment and medicine. A bit old fashion drugs - cause they are cheap. You have to fight to get yourself a right treatment. But we MPN patients are working for a better tomorrow together.

What is your message of hope or words of advice?

Don't give in. Find the support group. Peer power is so important. Change your habits: quit smoking, avoid alcohol, eat healthy, add some sports. Do what makes you happy. Try to enjoy and cheerish your life.

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