Beyond the Numbers
For five years, my question was simple: What can this clinical trial do for me? 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 at Macquarie University. 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 the consent form, I contributed to Macquarie University's Consumer-Engaged Cancer Research Symposium, at the invitation of Dr Dhanusha Sabanathan — the principal investigator of my trial. After 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.
What five years inside a clinical trial asked of my life — the reflection prepared for the Consumer-Engaged Cancer Research Symposium at Macquarie University on 17 July 2026.Read the Symposium Brief → The Full Story
The evolving long-form account of the people, decisions and realities behind five years inside a clinical trial.Read the Full Story → Beyond the Symposium
What stayed with me after the event — and the questions my experience continues to raise about research, care, family burden, access, records and artificial intelligence.Read Beyond the Symposium → Where From Here?
When lived experience becomes a direction for future work.Read Where From Here? →
Comprehend
Five years inside a trial taught me that the hardest part was rarely the treatment. It was the paperwork around it — consent forms, results, letters and reports arriving faster than anyone could absorb them, each one asking for a decision before it had been understood.
Comprehend is the answer I wanted at the time. You bring a document into it and read it as a conversation: ask what a clause means, what a number implies, what you are actually agreeing to — and keep asking until it makes sense. Understanding first. The decision after.
Explore Comprehend →