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Lived Experiences March 15, 2022

I was diagnosed with breast cancer in 2009 when I was in my twenties. I was in Melbourne finishing up my PhD. I was treated through the Austin Hospital just before the centre was launched as the Olivia Newton John Cancer Center. The care and support I got was amazing. Simple things like putting all the young people in the same session for our chemotherapy. We had things in common based on our stage of life and could share our journeys. If social work knew I was in there for chemo they’d pop by and have a chat with me. I didn’t need a separate appointment. They helped guide me through the process and understood what questions I needed to ask. I had resources to guide me through my journey.

I didn’t realise how unusual this support mechanism was until I came to Perth and my care got really fragmented. In 2013, what was thought to be a martial art injury turned out to be a return of my cancer, this time in the top of my femur. I was referred to an oncologist at St John of God Hospital who had a reputation for thinking outside the box.

I started chemotherapy straight away and had a tumour sample sent to the US to work out what kind of treatment would be best for me. I had major surgery at Charlie’s to remove the top of my femur and my hip and replace it with metal. I went to Hollywood Private for rehab, then back to St John of God. The US analysis of my tumour showed that it would be best treated with a drug that wasn’t available at St John of God. My second lot of chemotherapy was at Hollywood Private. I had radiation to my femur every day in Wembley. That was followed by more rehab at a different facility. At the back end of this, I was referred to a specialist oncology psychology service at Royal Perth Hospital.

It was a very different journey to the one that I’d had at the Austin in Melbourne.

A Comprehensive Cancer Centre in WA will make things better in so many ways.

My experience at the Austin shows that having all the specialised expertise to provide treatment, care and support in one place makes a huge difference. Here in Perth, my care and treatment has been incredibly fragmented.

Coordinated appointments in one place so you can continue to live your life. My appointments here frequently conflicted, e.g. orthopaedics at Charlie’s would schedule a follow-up at the same time I was booked for chemotherapy infusions at St John of God. I had to choose which one to go to and then reschedule the other one. It was a full-time job.

Guiding, supporting and advocating for people through the process. Here in Perth I have been my own guide which has been extremely stressful and time consuming. I got the treatment that I got because I’m a medical researcher by training who asked the hard questions of my oncologist and surgeon. I advocated for myself and didn’t take no for an answer. I wasn’t offered things like sending my tumour to the US for profiling – I asked. Everyone needs access to that same level of care and new innovative research to ensure the best outcomes.

A Comprehensive Cancer Centre which is centred on the needs of people living with cancer will provide this navigation and advocacy and in doing so transform people’s lives.