I have been living with breast cancer for over 13 (including secondary breast cancer for 10 years) years and during this time I have seen many changes.
When I was diagnosed there were few resources especially for the younger woman. Nowadays, secondary cancer is like a chronic illness as people are living longer. There are more drugs available and with better detection people are treated earlier. There are also more resources becoming available to help women.
In May 1997 at the age of 31, I was diagnosed with early breast cancer, which came as a shock to a mother with two sons aged 15 months and 2.5 years old. I had a lumpectomy and axillary dissection followed by 6 weeks of radiotherapy and chemotherapy.
In December 2000, I was diagnosed with multiple bone metastases. I underwent radiotherapy to relieve the pain, had my ovaries irradiated and started endocrine therapy (through the special access scheme) and bisphosphonates. In 2007 I was diagnosed with liver metastases and have been on six different chemotherapy regimes since.
I started doing Advocate work for BCNA in 2002. For me advocacy work helps ensure that the newly diagnosed or those that not yet diagnosed will have current and up to date resources. Through my own cancer experience, I like to be involved to help others have a smoother or informed cancer journey.
In 2003 I won an overseas holiday and was refused travel insurance because I had secondary cancer. I ended up obtaining travel insurance with another company 50% owned by the company that refused my initial travel insurance application. After my holiday I lodged a discrimination complaint with the Human Rights and Equal Opportunity Commission (HREOC) for who sided with the insurer and dismissed my complaint. I took my case to the Federal Magistrates Court which I won and the insurer subsequently lost on appeal. I wasn’t looking for cover for my cancer diagnosis but wanted to make sure I was covered for anything medical not related to my cancer, lost luggage, delayed flights etc. Winning my case set a legal precedence stopping insurance companies discriminating against people have a terminal illness like cancer. HREOC guidelines for insurers are based on my court cases, without acknowledging that they dismissed my complaint.
As an Advocate there are always challenges, including public speaking! I have told my story at an Adelaide mini field of women, was a member of the working party that created Hope & Hurdles Pack. I am currently working on a NBOCC working party looking at Bisphosphonates, drugs that help strengthen bones affected by metastases.
One of the highlights of my work was being invited to share a breakfast with other volunteers and Lance Armstrong prior to the start of the 2009 Tour Down Under.
For me mixing with other people who have cancer is a reminder that we are all unique, that the same cancer can have vastly different effects on similar people and accordingly that our journeys are all different. Cancer has taught me to live for today, to continuously challenge my treating doctors, make decisions and to have no regrets. I believe having cancer has made me a better human being.
My personality is continuously evolving with every new success or set-back during my cancer journey, requiring great understanding and support from my family.
Personally advocacy work keeps me informed with current treatment options and standards. Being involved in working parties allows my voice to be heard and show that I am a person with a life and family, not just a statistic.
I hopefully have inspired others to take control of their cancer journey.