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Diagnosed with a rare blood cancer, Peter turned to online forums for support

Cast your mind back to 2019, and life pre-COVID. For 56-year-old Peter Dโ€™Onghia, that meant a relentless travel schedule with his job as an academic and medical journal publisher โ€“ something that led to a delay in following up on blood test results that were, as he puts it, โ€œa little bit oddโ€.

Peter had hairy cell leukaemia
Peter had hairy cell leukaemia

Brushing off extreme fatigue as a side-effect of his busy lifestyle, it took another six months and an emergency hospital admission for another issue for Peter to finally be diagnosed with hairy-cell leukaemia  โ€“ a rare type of blood cancer in which in which bone marrow makes too many B cells, which look โ€œhairyโ€ under a microscope. 

โ€œI was shocked,โ€ recalls Peter. โ€œThe doctor said, โ€œItโ€™s leukaemia, but not the worst kindโ€ โ€“ but when you hear the word โ€˜leukaemiaโ€™, the restโ€™s irrelevant. Now Iโ€™ve gone through it, I know itโ€™s not the death sentence everyone thinks it is, but back then thatโ€™s what I thought.โ€

Prescribed chemotherapy and immunotherapy, Peter juggled work with treatment โ€“ battling brain fog and fatigue to retain a vital sense of normality. In a year that saw Peterโ€™s family deal with multiple bereavements and a global pandemic alongside his cancer treatment, 2020 ended with the news that Peter was entirely in remission โ€“ a point that marked the beginning of a slow return to health.

I think thereโ€™s a misunderstanding about chemo and cancer treatment โ€“ people think you have your chemo and reach remission and youโ€™re better,โ€ says Peter. โ€œIn reality, itโ€™s often years before people feel restored to their previous life โ€“ recovery can be very, very slow.

For Peter, having a rare type of blood cancer led to him searching online for relevant information. โ€œThere are websites and organizations that can help, and a hairy cell foundation in the US that has quite a bit of information. I also joined groups on Facebook, and whilst I was very passive and didnโ€™t write much, it was good just to hear other peopleโ€™s experiences and think, โ€œOkay, itโ€™s not just me.โ€ 

Peter, Claire and their daughter Anna pulled together throughout Peterโ€™s treatment

Informed by doctors that many people diagnosed with hairy cell leukaemia will experience a relapse, Peter nonetheless has a positive outlook and a renewed sense of priorities.

โ€œDoctors tell me it will come back, but it might be next year or it could be in ten yearsโ€™ time โ€“ and thatโ€™s fine, because Iโ€™m optimistic that, in a decade, the treatment will be even betterโ€ฆ When something like this happens, you look at your family and think โ€“ โ€œthatโ€™s whatโ€™s really importantโ€. I know thatโ€™s a cliche, but itโ€™s true.โ€


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