When I first heard the words from my GP, I remember feeling an overwhelming sense of nervousness. I was quickly referred to a haematologist for further testing, and while the outlook was thankfully positive, with the possibility that I might never need treatment unless the disease progressed, the waiting was difficult. 

Each stage brought its own kind of uncertainty: waiting for results, for appointments, and for the next steps. 

My family had known I was undergoing tests, so they were somewhat prepared when I sat down with them to share the news. Even so, telling them face to face was not easy. For my extended family, I chose to explain over the phone. 

A long and varied treatment journey 

My treatment journey has been long and varied. I’ve undergone two rounds of chemotherapy, followed by a stem cell transplant, then two courses of immunotherapy when the disease returned. 

More recently, I was accepted into clinical trials, and I’ve just begun my third. What I’ve found hardest has not been the disease itself, I wasn’t unwell before treatment, but the treatments, which were often brutal. 

The endless waiting in between each stage was another challenge. Yet, through it all, I’ve been struck by the extraordinary quality of medical care in Australia. Before this, I had never spent time in hospital, and I was amazed at both the facilities and the compassion of the staff. 

My clinical trial: less intrusive with less side effects 

Before joining a clinical trial, I knew very little about what it meant. I understood the idea, but I assumed it would be a matter of chance whether I received treatment or a placebo. When standard treatments stopped working well for me, I was open to anything that offered hope. 

The trial gave me that hope, and with fewer side effects than chemotherapy, it felt like a chance to regain some normality. 

My experience in trials has been largely positive. There have been moments of frustration, times when promising early results didn’t continue, but the care has always been exceptional. Setbacks have been met with immediate attention and reassurance, and side effects have been manageable. 

Being part of these trials has meant renewed hope for me and my family, at a time when options were running thin. The treatments have been less intrusive than those I’d had before, and I’ve always felt welcomed and supported along the way. 

Cancer affects the whole family, 

not just the person with the diagnosis 

If there’s one thing this journey has taught 

me, it’s that cancer affects the whole family, 

not just the person with the diagnosis. The 

emotional weight carried by loved ones can 

feel heavier than the physical challenges I’ve 

faced myself. That’s why I always encourage 

others to seek support, whether that’s with 

diet, exercise, counselling, or mental health. 

It’s as important for family members as it is for 

patients. 

In many ways, I think this process has been 

harder on them than on me.