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Caitlin Delaney: Advocacy burnout is real

Caitlin Delaney/VCCC Alliance LinkedIn

Nov 11, 2024, 18:51

Caitlin Delaney: Advocacy burnout is real

Caitlin Delaney, Chair of the National Patient Advisory Committee and Patient-Partnered Research at VCCC Alliance, shared on LinkedIn:

“My advocacy has taken a backseat recently as I have been struggling with gruelling side effects on a phase 1 HER2-ADC clinical trial drug (which is working at least!). But a treatment delay meant I had the energy to attend the inaugural Rare Cancers Australia Long Lunch a couple of weeks ago where I also had the honour of briefly sharing my experiences as a rare, less common and complex (RLC) cancer patient.

Advocacy burnout is real, and it is exhausting trying to stay alive, let alone advocate for others. Yet advocacy is equally rewarding, energising and empowering. To hear that my experiences and insights have inspired nurses, clinicians, policy makers and others to implement change and improve cancer care, and have also empowered patients to self-advocate and find hope, brings me such joy and purpose.

So thank you, Rare Cancers Australia, for not only supporting me and the thousands of other Australians like me, but for also giving me the opportunity to use my voice to help improve equity and access for ALL cancer patients. It always heartens me to be in a room filled with various stakeholders coming together as a community to change the status quo for RLC cancer patients. Collaboration and innovation are key to progressing equity, access and better outcomes for cancer patients, regardless of where their cancer originated.

And big thanks to one of besties Kate Murphy who was my plus 1 for the Long Lunch. Since my stage 4 diagnosis nearly 8 years ago I have only ever really invited my husband along to treatments and my speaking events. This is partly because I want to protect my loved ones from being uncomfortable in the face of suffering, but also because staying alive and advocacy is my job, and I keep my job and personal life separate. The RCA Long Lunch was the first time I invited a friend along to an event, and it was a VERY special day to share this part of my life with a very special friend whose support has been invaluable. As I always say – this cancer is not just mine, it is my loved ones too – my family, friends, community. And I couldn’t keep doing it without the love and support of them all.

I have learnt so much about clinical trials through my recent experience. Most of it unfortunately is not good. This is the first time I have been on a treatment that I want to stop, regardless of it working. Co-design, shared decision making, timely and effective communication, inclusion of the patient voice, and supportive care are critical for trials to be successful. Yet again I see how important compassionate, person-centred care is. I feel that there is a lot of work required in this area, so watch this space because I am back in business!!”