It’s 18 years since I was diagnosed with breast cancer and today, on ABC Day (26th October 2015), it’s time for reflecting on how fortunate I am. My life was turned upside down by my diagnosis and forever changed. Changed in so many positive ways. SO if you’re newly diagnosed and reading this, it might sound weird, but believe me with time, you’ll probably come to think in a similar way.
Over the last 18 years I have had amazing experiences and opportunities. There have been lots of highs and many sad times when good women that I have known have lost their battle. Today, I fondly recall Sandy Smith (Canada), Orlanda Capelli (Rome), Deb Read, Christine Barker and Jenny Petterson all from Sydney together with Gayle Creed (Brisbane), and from Darwin there is Tere Jaensch (my fiesty Mexican friend), Jill Parker, Jenny Scott, Gaelene Henderson and Joan Whitworth. There are many others too, but these particular ladies popped into my head today.
Awareness, treatments and research have changed so much since my diagnosis. It comes down to the voices of consumers making themselves heard.
Back in my day (gosh, I sound ancient!), there was no NBCF. No breast nurses except in Victoria. No McGrath Foundation. No BCNA and no Dragons Abreast. There was, however a group of passionate women who were all determined to make their voices heard. Women like Lyn Swinburn AM (Vic) who started BCNA, Susan Tulley (NT), Penny LaSette (NT) and Tere Jaensch (NT – dec), Sally Crossin AM (NSW) and Anna Wellings Booth OAM (ACT – dec) who became the very first group of consumer advocates trained by the NHMRC. There are also other women like Jan Skorich (ACT), Janelle Gamble & Leonie Young (QLD), Veronica Macauley-Cross (QLD –dec), who all made wonderful contributions to breast cancer advocacy. They were the vanguard and should never be forgotten for their amazing contributions. There were others too, like Pat Matthews (TAS – dec), Carol Bishop (WA), Gerda Evans (Vic) and a host more have followed in these footsteps.
Together we all advocated for change and it’s pleasing to see so many wonderful improvements in treatment for those diagnosed. It’s also great to see all the support breast cancer receives globally, BUT advocates are still needed. Not just people telling their stories, but trained advocates who know how to present their arguments, when and how to push to best present the breast cancer cause, not for those who are already diagnosed but for those who will inevitably follow. There are still too many people being diagnosed.
My daughter Sasha (now 21) was 3 years old when I was diagnosed and my son was 12. It had a huge impact on both their lives. More than we initially realised.
My two young nieces are both 14 years old. I sincerely hope a cure for this insidious disease can be found sooner rather than later. It is for my daughter and my nieces that I have always been an advocate – for them and others that follow us on the breast cancer journey. I am fortunate to have had wonderful training by the NHMRC, mentors and support on my journey as an advocate. As the Founder of Dragons Abreast in Australia, I am forever grateful to Sandy Smith (dec) and Professor Don McKenzie from Abreast In A Boat, Jon Taylor (dec) then President AusDBF, Alan Culbertson my first coach, and Melanie Cantwell (ex DBNSW) who so readily supported my vision for breast cancer survivors in Australia to have the positivity of the sport of dragon boat racing.
I was lucky. My treatment (a mastectomy and chemotherapy) has allowed me to survive for 18 years. I never say I am cured, because I also know far too many who have experienced a recurrence many, many years later. I go for my annual check ups, I look after my health as best I can and am always grateful for each day I am blessed with.
“Seize the moment. Remember all those women on the ‘Titanic’ who waved off the dessert cart.” ― Erma Bombeck