Rare Cancers Australia

On this day in 2020 my mum was diagnosed with stage 4 mucosal melanoma and told she had six months to live.

This came just two years after her Alzheimer’s diagnosis at only 69. As her  administrator, I was responsible for making decisions about her care. It meant countless conversations with specialists, endless scans and appointments, and, hardest of all, watching my mum struggle with confusion. Because of her dementia, she did not understand or remember that she had cancer.

I believe that not knowing and not undergoing treatment gave her more time. She lived 19 months beyond her prognosis.

Mucosal melanoma is incredibly rare, affecting only about 1 in a million people and just 1% of all melanomas. It is difficult to detect early because it grows in hidden areas, and by the time it is found it is usually advanced. It is aggressive, its causes are not well understood, and it is considered incurable. Treatment does not cure the cancer. It focuses on managing symptoms and providing the best possible quality of life.

Five years on from that devastating second diagnosis, and on my birthday, I am pledging to donate 10% of all sales in 2025–2026 to Rare Cancers Australia. Rare Cancers Australia fundraises to provide patients and families with practical and financial support, specialist care navigation, emotional connection, vital resources, and advocacy for better access to treatments.

I miss muymum every day, but her love is still my guide. This pledge is one small way of turning grief into something that helps others.