On beating the odds and women’s medical rights

My medical journey has unfolded over the past 18 years; it’s complex and much of my story is about being ignored. I’ve had three different cancers. It all started when I was in my thirties, with a pain my right shoulder and then I noticed a big lump under my right arm, very close to my breast. I panicked that it was breast cancer and went to a local doctor, who didn’t know me very well and diagnosed me with an inflamed lymph node. But I knew something was wrong. Over the next 11 months I went to seven different doctors and had 21 consultations – just trying to find someone who would listen to me. By the time I was 35 years old, I ended up in ER in a lot of pain and a range of symptoms and was diagnosed with two blood cancers; myelodysplasia and non-Hodgkin’s lymphoma and the only way to get rid of them was to have a transplant. So, now I’m immunosuppressed and take 52 meds a day just to keep me going. The fact I'm still here is a miracle. 

I’m driven by my own life and death story. I've faced death almost six times, from three cancers and a transplant. Any of these could have taken my life and now, I want to save lives. I want to raise awareness so that more women are diagnosed at Stage One rather than Stage Four. Medical misogyny needs to be ruled out and my desire is to help women who are being ignored and not getting their symptoms taken seriously - women who have loved ones and are caring for husbands, partners, children, parents at the same time as fighting for a diagnosis.

I give by providing my story as a catalyst for more women to stand up for their medical rights. Women need to understand what their rights are as patients and that they are allowed to disagree with their doctor. When I was first diagnosed, I had no idea what medical rights were. But now I want to create more awareness around the dangers of medical misogyny because it’s dangerous.  

I've become really noisy about this issue; if you had a bunch of pots and pans, I'd bang them around! I share my story through writing, speaking, advising and consulting because I believe that we have to keep speaking about this issue and make sure more women’s stories get into the hands of people who make decisions about the health system. I talk to politicians, and I've written to the Prime Minister about including mandatory questions at the end of every GP visit like - are you happy with my opinion? Would you like me to keep going? We need to make sure that everyone is taken seriously and medical dismissal is a thing of the past. 

I was part of the Australian Patients Association for 12 years.  They gave me opportunities to speak to health ministers and people in the medical industry; that involvement helped me to make connections and gain more experience I’m involved with the Consumer's Health Forum of Australia that involves a small group of leaders in this field, and I’ve done some media work for them recently. I did radio announcing in my early 20s on a community radio station it helped to give me the confidence to speak publicly. I’ll take every opportunity I can get to speak about women who need a diagnosis. 

I've learned that we're all the same. Everyone has the same fears of cancer, losing control of our health, or having an awful disease that takes over our life. Every person who I’ve spoken to, asks me similar questions. They don’t know what to do. They don’t know how to make their doctor listen to them and often their families don’t understand. It’s the same story over and over again. I often tell them about my own story. I tell them what to ask their doctor and the little tricks and tips that I've learned along the way. There’s a lot of medicine in passing on the learnings from my journey to others. And I also think, on the flipside, that we sometimes forget that doctors are people too. They have the same feelings and emotions that we do, and they often find it really difficult to tell us bad news. We need to treat them as partners in our health and learn to talk to them properly. 

I've learned that giving your story is a powerful thing. People often say that I’m very bold to do this. But in my many stays in the cancer ward I’d see families coming into the room next to me to see their loved one who was dying. And that made me understand that this really isn’t a game. This is big time stuff. People are dying and we need to ensure more people are diagnosed sooner and as fast as possible. So, I've learned that this issue is a life and death thing. We have to speak out and be as bold as we can. 

I would love to consult to the people in government who make big decisions about our healthcare system. Because of all the things that have happened to me I'm not able to work full time, but I would love to be a bridge between these people at the top and the real stories of what some women are dealing with when they go into a GP’s office. I've also written a book and I’m pushing my publisher to get it into the hands of these powerful people.