Ellie’s Story

After her mum, Andeau, was diagnosed with mucosal melanoma in August 2023, Ellie and her auntie became Andeau’s devoted carers. Tragically, just ten months later, Andeau lost her battle with this rare and aggressive form of melanoma.

Throughout this heartbreaking journey, Ellie came to understand how little awareness, research, and treatment exists for mucosal melanoma. Determined to make a difference, she is now committed to raising awareness and advocating for better research and support—so that others won’t have to face the same devastating experience.

Ellie is now powerfully raising awareness through MSCAN’s Community Action Team. At the Parliamentary Friends of Skin Cancer and Melanoma Awareness Start of Summer BBQ in November 2025, Ellie bravely took to the stage to share her story and raise awareness of mucosal melanoma.

Here’s what Ellie had to say.

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I want to take a moment to acknowledge the many incredible nurses who supported my mum through every stage of her treatment, the specialists whose empathy and passion made a difference in her care, and the palliative care team who, in her final days, became like family to us.

I began caring for my mum in August 2023, alongside her identical twin sister, Megan, when my mum was diagnosed with Mucosal Melanoma, a rare cancer that was initially misdiagnosed as a haemorrhoid. 

At 58 years old, Mum faced a devastating diagnosis, and I, at 31, just 9 months into my own journey of motherhood was confronted with the terrifying prospect of losing her. Megan, without hesitation, quit her job the same day to provide full-time care for Mum, with no financial support, facing the reality of losing the person who had been her other half for her entire life.

Over the next 10 months, we cared for Mum after an 8-hour surgery, keeping open wounds clean, and treating an infection that brought a halt to her post-operative radiation. We supported her through painful treatments, changing her stoma bag when she couldn’t manage it herself, and spent sleepless nights on her couch, rubbing her back as she fought nausea and pain from her second, and final, round of immunotherapy. One night we called for an ambulance because Mum’s dehydration was threatening to shut down her organs, and for weeks, Megan would scrub her radiation burns, as the pain became too much for mum to bear.

There were times when we felt completely lost, uncertain of where to turn or who to ask for help. We didn’t know anyone who had fought this rare and aggressive form of cancer before. It wasn’t until I went searching and found an online support group, connecting with people across the globe facing the same battle. They helped me become an expert in Mucosal Melanoma. But by then, it was too late.

We knew the growing satellite spot behind Mum’s ear signified that the cancer had spread to her brain, and we had to wait four long weeks for confirmation.

In mum’s final days, my Auntie and I learnt to administer her pain relief as she slipped away. On June 23rd, 2024, after months of fighting a fight I didn’t think was humanly possible, Mum passed away in our arms, at home, where she wanted to be.

Caring for someone you love is one of the most challenging responsibilities a person can take on.

But it’s also one of the most isolating. In those moments, our roles reverse. I became the one to remain strong, to advocate, to make decisions, and to fight for mum, all while mentally preparing for the unimaginable: a life without her.

I share the heartache and the exhaustion because I want change. As a carer, I was forced to confront the lack of treatment options available here in Australia for those battling rare cancers, and the approach to support and care, particularly for those fighting cancer but for the carers as well.

I told myself I would not walk away from this fight with regrets. But I do. I wish I had done more to create urgency and push for more treatment options. I can’t help but wonder if I had advocated more, Mum could have had met her granddaughter and make it to her grandsons second birthday.

But the truth is, I shouldn’t have to wonder. We should not have to advocate harder. That’s why today is so important. The incredible part of the National Skin Cancer Scorecard is that it was informed by the expertise of people with lived experience, clinicians, researchers, organisations and advocates.

MSCAN has developed the Scorecard to ensure melanoma and skin cancer remain firmly on the national agenda and to prompt important conversations, including the one I hope to spark today by sharing my experience caring for my mum. 

Thank you.

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