#MelanomaHeroes: The Advocate

After a close friend lost a five-year struggle with melanoma, Gill was determined to learn as much as possible about this serious and widely misunderstood cancer.  The more she learned, the more energized she became about making a difference in the fight against melanoma.  Eventually Gill gave up a 25-year legal career to devote herself to helping melanoma patients connect, manage their disease, and gain access to potentially life-saving treatment.  Here she talks about the work that has led her to become one of our Melanoma Heroes.

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Tell us why you decided to become an advocate for people with melanoma?

My close friend, Jon, was diagnosed with melanoma in 2002.  The treatments we take for granted today weren’t even on the horizon then.  I remember thinking, how can it be that people in the 21st century are still dying from this preventable disease?  I searched everywhere for help, but found nothing.  Jon died in 2008, aged 30.  I realised there was a massive gap in patient advocacy so I decided to set up a website and raise money to help patients.  I eventually founded Melanoma UK and in 2012, after 25 years in the legal world, I decided to devote myself to the organisation full-time.  

How have the changes in treatment for advanced melanoma affected patients?

Understandably, patients are interested in learning about new treatments.  If Jon were diagnosed today, he’d have much more cause for hope.  The support we provide to patients has evolved along with the science.  When we started, patients mainly wanted to know where they could go for palliative care.  Now, patients realize they have choices among treatments, which wasn’t the case a decade ago.

Why do you think your work matters?

It matters because we’re giving patients support they don’t always get from their doctors or nurses. The typical physician treats many patients a day – they’re doing the very best they can, but they are limited. We provide support in-person as well as over the telephone or Internet so that they’re not alone. Apart from the direct health consequences, a diagnosis brings concerns about access to treatment, insurance coverage, child care, and many other things.  We provide holistic support to help patients navigate all these issues and help them gain access to new treatments.

How does the melanoma community differ from other types of cancer communities?  

Melanoma tends to affect a younger demographic than most other cancers do.  For instance, every patient I spoke with this week was under the age of 40.  Patients are often in the prime of life, with concerns about work obligations or raising children that say a man in his 60s facing kidney cancer might not have.   Another difference is that melanoma patients are less organized - with only around 13,000 melanoma patients in the UK we’ll never be a massive, powerful organization.  Melanoma is considered a fairly rare disease, and that makes it hard for us to attract the attention we need.  

What are your future hopes for the melanoma community?

My main hope is that we can sustain interest in melanoma.  Melanoma needs to stay at the forefront of everyone’s minds as we’re seeing more incidence every year. We need much more prevention and disease awareness, especially when it comes to self-examination.  It’s not just about moles – any skin change can be an indicator of melanoma.  I’d love to see more clever and innovative ways to capture people’s attention to encourage this.  

What advice would you give to someone who has been given a diagnosis of advanced melanoma?

Take control of your situation, do your research, don’t take no for an answer, and make sure you’re getting the best possible treatment.  Ask where the treatment centres are, where the clinical trials are being done. Arm yourself with as much information as possible, educate yourself about your options and don’t be afraid to seek out second opinions.

Who do you think are the real Melanoma Heroes are?

For me, the real heroes are the patients.  A close second are the doctors who treat them. The scientists who are working so hard to develop new treatments are also heroes, but my true heroes are the patients who show such bravery in dealing with melanoma every day.  

What gets you out of bed in the morning?

My dogs! But really, it’s the patients and their families that motivate me, and the inspiration I gain from knowing I’m making a difference in patients’ lives.  I spent 25 years working in law. I certainly didn’t loathe it, but I didn’t want to devote my life to that.  I realized I had an important role to play in melanoma, and that absolutely gets me out of bed every morning, and on weekends too!