Tessa Parry-Wingfield: So who’s heard of eye cancer? She hadn’t.

Tessa Parry-Wingfield is a journalist and global communications expert—skilled at finding information, building communities, creating content.

Then she was diagnosed with ocular melanoma. Eye cancer. Most people have never heard of it. It affects 5 per million adults and roughly 600 cases annually in the UK - Tessa lives in London. And in her case, everything changed in less than three weeks.

She's the CEO of The Power of Words, a global communications consultancy. She has 25 years’ experience in journalism, communications and PR – across Europe and the MENA region. She loved every minute of being a journalist for ten years – as a reporter, producer and writer for TV news outlets such as Al Jazeera, ITN, and Channel TV. And the commercial arms of Reuters and Press Association.

For years she wrote the headlines but in recent times, she became one. She couldn't find adequate conversation about her cancer—not because she didn't know where to look, but because she was advised by her healthcare team that information online can be skewed or out of date.  The truth is there is still so much to learn about this and other rare cancers that don't attract the funding and the trials because the numbers are so small in comparison.

Tessa lost her left eye—the standard treatment for ocular melanoma. Surgical removal. And so begins the processing: physical loss, visible permanent difference, identity change, grief for her "real eye," navigating the world looking different, and acquaintances who would really rather not engage anymore. 

Basically, she had zero preparation time. But in an extraordinary twist, she found another ocular melanoma patient, Jo, through chance connection via a mutual friend. And Jo lives less than a mile away. Pure chance. 

In this episode, Tessa discusses:

• The moment of diagnosis with cancer she'd never heard of
• Searching for information as a communications professional and finding almost nothing
• Why major cancer charities organised by type leave rare cancers with little comparative infrastructure
• Losing her eye and the grief no one acknowledges
• Finding peer support through chance, not system design
• What comprehensive rare cancer infrastructure should look like

This matters because, unlike Tessa, thousands of people are navigating life-altering diagnoses of rare cancers essentially alone.

The solution surely, is creating a comprehensive infrastructure serving ALL rare cancers, recognising commonalities rather than fragmenting by specific diagnosis.

Here's Tessa's story.  If if you know someone with ocular melanoma or any rare cancer, please share this and tell them we are listening and they're not alone.

 

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Tessa's website 

https://tessaparry-wingfield.com/

Read Tessa's story in her own words in The Times newspaper (UK)

https://www.thetimes.com/article/b344cb32-9bcb-44f9-a670-11fad5bfde9a?shareToken=a3d6005ab14c7c7b01b1dea141cdf873

Ocular Melanoma UK 

https://omuk.org/