A dynamic duo

Teacher turned women’s health advocate Lyn Swinburne met Olympic and Commonwealth Games medallist Raelene Boyle in 1998. They bonded over their shared breast cancer experience and determination to help other women. In 2018, they celebrate 20 years of BCNA and 20 years of friendship.

RAELENE: Being diagnosed with breast cancer at age 44 was shattering. I was in shock, totally unprepared and completely lost in a no-man’s-land wondering how long I had to live, what would happen next and what I could do.

After going through my treatment, there was so much happening, I couldn’t think of anything but getting better. For a while Lyn tried to contact me through letters, phone calls and friends, but I couldn’t think about anything else but recovering.

I was at a New Idea launch and felt very uncomfortable with all my menopausal symptoms, so asked my minders to get me out of there. We escaped to an elevator and just before the doors closed, a foot stopped the lift closing. At the end of that foot was Lyn Swinburne.

She told me about her plans to help women with breast cancer and after only a few floors, I knew she made complete sense and I instantly jumped on board.

We have been working together ever since. She is my best friend and I am, as I know are many other women in the country, dependent on her.

I have come to appreciate that she is a person for every woman – not just the high end, but for every woman diagnosed in Australia.

One of our most poignant moments together was the success of the first Field of Women in Canberra.

Lyn was there with lots of eager volunteers planting out the 12,500 silhouettes, white and pink.

She led the silent march, and as I walked with two Aboriginal women, the rain started. Breaking the silence, I whispered to one of the women that it was a shame it was raining. She replied, ‘It’s the gods crying with us, showing us they care.’ I will never forget that emotional moment as BCNA’s significant beginning 20 years ago.

The other pivotal milestone was my 50th birthday party in Melbourne.

I wanted to celebrate being alive and hoped to raise funds for BCNA, so I sat in a meeting room at Bakers Delight and rang every friend, contact or person I knew to ask them to buy a table. We had a full house of 1,100 of my ‘closest personal friends’.

Of most significance was that we convinced the then Prime Minister, John Howard, to make the expensive drug Herceptin accessible for women who needed it. This was a wonderful victory as this drug has changed the lives of so many women since then. Mind you, everyone wanted a dance and he left very late, but John Howard didn’t have a chance of getting out of the room without hearing about Herceptin.

Ten years later at my 60th birthday party, again as a fundraiser for BCNA, I felt proud that 10 of the women who attended my 50th and were taking Herceptin were well enough to enjoy the night. That is the magnitude of those parties.

Today, I think we still face a battle with improving the communication at diagnosis and during treatment between the medical fraternity and those everyday women and men in shock and suffering as they try to take it all in.

It also concerns me that there are so many drugs out there ready to help people but are out of their financial reach until they are added to the PBS. And I’m aghast that in Australia we have one of the slowest rates of reconstructive surgery in the developed world. Many women can’t move on until after reconstruction, so this is a cause we need to push.

In the future, I am beside Lyn doing what I can for people diagnosed with breast cancer – but my final word is that my 70th party will be just around my kitchen table!

LYN: I received my diagnosis of breast cancer in 1993 over the phone from a doctor’s receptionist during morning recess at the school where I taught. The shock of this moment was pivotal in my founding BCNA.

Although I knew I had advantages that others may not have, it was an excruciating journey and I desperately wanted to make it better for other women.

I wanted to put the focus of women’s care on the individual woman, not her tumour, with a better system where we helped and supported each other.

In October 1998, we held Australia’s first national breast cancer conference for women, Making a Difference, in Canberra as the launching pad for BCNA. We closed with the inaugural Field of Women on the lawns of Parliament House, which was an unbelievably bold public statement as a visual representation of the impact of breast cancer in Australia.

The 10,000 bright pink silhouettes stood for the women diagnosed that year and the 2,500 white for the women who we would lose.

This brought the shocking statistics to life, capturing media attention and the notice of politicians. BCNA was on the map.

Mini-Fields of Women now appear around Australia, but I will always remember the first ‘live’ Field of Women on the MCG in 2005 before an AFL match. It was a powerful, emotional sight and I will never forget the audible gasps from footy fans as I asked the women who’d had breast cancer to raise their arms in the air.

Early on, I realised BCNA needed a public figure to raise the profile of our cause and Raelene Boyle was suggested. I tried everything to get her on board, but she didn’t seem interested. Then at a New Idea function, I saw her heading for the lift and I thought, ‘It’s now or never’. As the door was closing on the lift, I stuck my foot in and jumped inside.

Whatever I said must have rung a bell because she invited me to see her the next day. We clicked, the BCNA concept clicked with her, and she has been our greatest, most loyal, dedicated Pink Lady ever since, and we are best buddies to this day.

Raelene’s 50th and 60th birthday parties were momentous for BCNA. Both were attended by the Prime Ministers of the day. Her 50th in 2001 was pivotal in securing the interest and support of John Howard to successfully secure access to the drug Herceptin for women with advanced breast cancer. This drug has gone on to change the landscape of breast cancer treatment, saving many lives.

That campaign makes me so proud, clearly demonstrating BCNA’s power and influence. It has grown from the ultimate grassroots organisation, formed and driven by the voices of ordinary women like me, who wanted a better deal for ourselves, our daughters and the women who would be diagnosed tomorrow and the next day, to influencing the political agenda of our country.

I think the basic issues facing people now are essentially the same – communication, understanding options, and the need for psychological support for themselves and their family members. We’ve come a long way, but sadly the quality of care can too often depend on where you live.

I’m most grateful these past 25 years to have seen my small children grow up into beautiful adults, and now for my grandchildren! I am hopeful that by the time these little girls become adults, our world will be free of breast cancer.

Issue 82
Autumn 2018