Beyond the Numbers

For five years, my question was simple: What can this clinical trial do for me? Today, for the first time, I'm being asked a different question: What can this trial — and future trials — learn from me?

In 2014 I was diagnosed with breast cancer. After surgery, chemotherapy and radiation, I believed I was in remission. Seven years later, over three weeks in June 2021, that certainty disappeared — the cancer had returned, and it was Stage IV. Instead of chemotherapy, I was offered a place in an international, double-blind clinical trial. I hesitated, because it was after all a trial. But I also knew it was a chance I could not dismiss.

Five years almost to the day after I signed that consent form, my oncologist — the principal investigator of my trial — invited me to join the patient–researcher panel at the Consumer-Engaged Cancer Research Symposium at Macquarie University. After five years of contributing blood, scans and questionnaires, I was being asked to contribute something different: what it felt like to live through it.

This project began as a personal journey through a five-year clinical trial. It has become an exploration of how research, healthcare systems and lived experience can better inform one another.