When I was diagnosed with a rare thyroid cancer in 1991, I was shocked. I was 33, a young mum and I was happy with my life. I think I was in denial for a long time, not realising how serious the diagnosis was. The doctors told my husband at the time that they thought I only had a few months to live. He chose not to share that with me, and I’m very grateful to him for that. I may have just given up and thought there’s nothing I can do, I’m just going to die.
I had my thyroid removed and when I woke up from the surgery, the doctor said, “I’m really sorry, but we didn’t get it all.” Because it was such a rare cancer, the doctors didn’t know how to treat it. I was left to recover from surgery without any treatment options.
I had more surgeries on my lymph nodes and even went to a clinic in Mexico looking for help. When you’re given no other options, you do what you have to. My son Paul was five, I wanted to be around to be his mum.
My marriage broke up twelve months after I was diagnosed. We had been going in different directions for a while and felt it was better to separate. I stayed in the family home and there were times when I could manage as a single mum with cancer. But when Paul was eight, it got to the point where I felt I wasn’t doing everything I could to get well.
I thought it would be better for Paul to have a part time mum, then no mum at all. I asked my ex-husband to take Paul and have him permanently. It was the most devastating, difficult decision that I've ever had to make. It broke my heart, but I had to focus on what I had to do survive.
I felt that I was a great mum before I got sick. I loved spending time with my son. I used to read him stories at night – that was always our special time. I’d sit with him in bed and give him a little head massage while I read. I think loosing that was something that we both really missed.
As difficult as it was, it was a good decision for me because it did allow me to focus on my diet, rest and health. I thought if I did that, then I could be there for him as he grew up. I did see Paul on weekends and he would stay with me on Wednesday nights. I knew that his father loved him very deeply and he was well looked after, so that’s what helped me cope.
My long-term goal was to be there for Paul’s 21st birthday. That was always in the back of my mind and it did really encourage me to do everything I possibly could, including more surgeries and chemotherapy in 2006.
Paul celebrated his 21st ten years ago and it was the most amazing feeling. In my speech, I said I was so proud to be there and I was so proud of the fine young man that he’d grown up to be. That was a real achievement for me.
After Paul’s 21st, I was surprised to find myself feeling really lost. For so many years, it had been my goal and when I reached it, I needed something to keep me going. I realised there was a reason I was still alive. I wanted to use everything I had been through to help other people.
I founded Rare Cancers Australia in 2012 with my husband Richard to advocate for rare cancer awareness and research – and fundraise for and support patients. It’s been my full time job ever since. I think my experience of having a rare cancer – and feeling so lost and alone – has enabled me to relate to the patients that I speak to everyday.
Through RCA, I’ve helped other mums to not have to make the same decision I had to. I do believe that everything I’ve done in the last 26 years has brought me to this point. I am so passionate about the organisation; it’s what gets me up every day.
I still have cancer; I’ve not been in remission since I was diagnosed. I have a number of tumors in my lymph nodes, bones, liver and one in my brain. I get tired and sick quite easily. It’s almost like my body has learnt to live with the cancer, but I know that it will start growing again and I will need to think about another treatment or clinical trial.
I don’t dwell on that, though. Because I’ve had so much time to live with it, I’m not frightened of the cancer. I’m not frightened of dying. I just make the most of every day. I feel so fulfilled that I’m helping people and that’s the most important thing.
Rare Cancers Australia is running a Mother’s day competition to help raise money for the 11,500 Australia mother’s diagnosed with rare and less common cancer every year: http://www.rarecancers.org.au/campaign/32/mothers-day.