My experience of palliative care extends to both adult and paediatric oncology, as a full-time carer to one of my young sons and also my wife. Diagnosed with neuroblastoma at fifteen months, my son Marmaduke died three years later, just five weeks after my wife succumbed to breast cancer.
Our experience of adult palliative care was satisfactory but by circumstance somewhat restricted in scope, flexibility and length.
However, our experience of paediatric palliative care in both the hospital and at home was highly involved, lengthy and positive. A short film about our experience (‘Marmaduke’s Story’) is used in hospitals and universities to educate students and staff about palliative care.
My personal experience of oncology fires my palliative care advocacy. I have been speaking on palliative care issues since 2015 to help educate politicians, medical professionals and the public on the importance and impact of palliative care to patients, families and the community.
I have addressed a Senate committee twice at Parliament House in Canberra, and in November 2018 presented on End Of Life issues at the 50th SIOP Paediatric Oncology Conference in Kyoto.
As a member of Palliative Care Australia’s national consumer panel, it is my hope to be able to contribute to the continued growth, promotion and acceptance of palliative care.
My professional background is in marketing and communications, and my oncology experience now shapes my work, as I currently educate audiences as a professional speaker on resilience, and finding positive ways to navigate major change.
The cancer experience also drives my voluntary work within the Royal Children’s Hospital in Melbourne, where through a parent advisory group I try and assist other families navigating the oncology journey.