Nigel Deacon is a retired educator living in Victoria, BC. A past board member of Save Your Skin Foundation, he remains deeply involved as the inspiration behind Ocumel Canada and a member of All.Can Canada’s Ocular Melanoma Research Working Group, helping to guide national research, patient support and advocacy efforts.

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Nigel’s journey with ocular melanoma began unexpectedly in June 2010 — by pure chance.

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“I got an email from my optometrist saying she was retiring. I thought, ‘Oh, I should go and say goodbye—she’s worked with me for 30 years.’”

 

When he stopped by her office, a last-minute cancellation meant he was offered a quick appointment.

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“She assumed I was coming in for an eye exam… and just moments later, I could hear from her voice that there was something wrong inside my eye. I had no symptoms. No reason to look in my eye.”

 

Within hours, Nigel was referred to a specialist. Soon after, he was diagnosed with primary ocular melanoma.

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He underwent brachytherapy that summer, a surgery to place a radioactive plaque in his eye to destroy the tumour.

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“I thought I was good. But I wasn’t.”

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Nearly two years later, after experiencing pain and undergoing further testing, Nigel learned the cancer had metastasized to his liver.

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“I assumed I was in the good 50% where the cancer doesn’t spread, because I’m generally lucky in life. But this time I wasn’t… and then I knew I was in big trouble.”

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Nigel underwent multiple rounds of treatment, including radiation and immunotherapy (ipilimumab), navigating a disease that, at the time, had very limited treatment options. 

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Amid his own diagnosis, Nigel began searching for connection, and found none in Canada.

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“I wanted to find other people who had the disease, and I couldn’t. There was no community. There was nothing online in Canada.”

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Determined to change that, Nigel connected with patient groups in the United States, learning from their models of support and advocacy. Through this work, he met Kathy Barnard, founder of Save Your Skin Foundation.

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Together, they recognized a critical gap.

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“Cutaneous melanoma patients were starting to do really well with new treatments, but ocular melanoma patients were not. Kathy saw the need. And I was living the need.”

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In 2019, Nigel helped establish Ocumel Canada, an initiative of Save Your Skin Foundation dedicated to supporting and advocating for Canadians affected by ocular melanoma.​ What began as a small effort has grown into a vital community.

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“I started a private Facebook group hoping to attract maybe 10 people—and we now have 250.”

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Through peer support, education, and advocacy, Ocumel Canada has become a lifeline for patients navigating a rare and often isolating diagnosis. This week marks another major milestone with the launch of its first dedicated website, further expanding its reach and impact. 

 

Later this year, All.Can Canada will release the first-ever national study examining the diagnostic journey of ocular melanoma patients. The report identifies inefficiencies, barriers, and opportunities for improving early detection and care coordination.

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For Nigel, the importance of this work is deeply personal.

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“Advocacy organizations like Save Your Skin and Ocumel Canada are a rock for people who’ve been diagnosed with a frightening disease. It’s a lifeline for patients when they most need it.”

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Today, Nigel continues to contribute his experience, leadership, and voice to improving outcomes for others.

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“I’m alive today. I am here. I can enjoy life.”