It was such an ordinary day when everything changed. My husband and I walked into the specialist’s office, and he pointed to the PET scan, explaining that the colours we were seeing weren’t good. He wasn’t an oncologist, so he didn’t want to use the word “cancer,” but when pressed, he admitted he would bet his house on it. 

My husband broke down in tears immediately. I remember sitting there in disbelief, I wasn’t sick, I didn’t feel unwell. How could I possibly have cancer? 

Feeling calm, until the diagnosis 

We were booked into hospital for a biopsy that very same day. 

I’ll never forget the woman checking us in, looking at my husband with such compassion as he sat there unable to speak, texting family members and then hanging up when the calls became too much. Seeing his devastation was the hardest part for me. Oddly, I felt calm, confident even, that we would get through it. 

But then came the devastating news: it was stage 4 inoperable metastatic cancer. At 58, to be told I had six months to live was a shock I can hardly describe. 

My treatment journey began with one dose of chemotherapy, but I quickly knew it wasn’t the path for me as it felt cruel and unbearable. I refused further chemo and instead started on Pembro every three weeks for 18 months. 

Limited options, low odds, but a valuable lifeline 

Eventually, I was accepted onto the clinical trial I’m in now. The hardest part has been living with the knowledge that treatment options are so limited for lung cancer, and that survival rates are so low. There’s also the stigma, the assumption that I must have smoked, when that wasn’t the case. But there have been moments of profound relief too. I’ll never forget the call from Professor Milward to tell me I’d been accepted onto the trial, or the joy each time a scan shows the cancer is stable. 

I had done my research and knew about clinical trials happening all over the world, so when I was given the chance to join one, I was ecstatic. Without it, I truly believe I wouldn’t be here. When faced with the reality of death as the only other option, a trial becomes a lifeline. I sometimes wish there was less red tape so that more people could access them, because I know so many would take that chance if they could. 

Being on a clinical trial has been an overwhelmingly positive experience. The care has been exceptional, the team incredibly flexible and supportive. I’ve been able to keep working, travel, and continue living life. 

Because my trial involves oral medication, it’s been relatively easy to manage. I would tell anyone considering it: give it a try, you have nothing to lose and everything to gain. You’ll be well cared for, and you may be helping others as well as yourself. 

Quite simply, it has been the difference 

between life and death 

For me and my family, the trial has meant everything. Quite simply, it has been the difference between life and death. Refusing chemo was the best decision I ever made, especially as people with my gene mutation often don’t respond well to it. The trial has given us access to life-extending treatment that we otherwise couldn’t have afforded or accessed through the PBS. I have six sons, and the extra time together has been invaluable for them. My elderly parents were devastated by the thought of me dying before them, so this trial has been a gift for them too. I can’t even begin to put into words how grateful we are. 

Since my diagnosis, I’ve tried to use my story to make a difference. I’ve spoken on radio, in newspapers, at events, and helped with fundraising for cancer research. I want people to understand how vital research and trials are, and how much more funding is needed to keep making progress. 

For me, a clinical trial hasn’t just given me more time. It’s given me hope, purpose, and the chance to turn something devastating into something meaningful.