20 Years of Breast Cancer Advocacy

2018 marks 20 years of involvement with breast cancer advocacy for me.

In Australia today we have the McGrath Foundation, Breast Cancer Network Australia (BCNA), National Breast Cancer Foundation (NBCF) and Dragons Abreast Australia (DAA) We’ve come a long, long way in the last 20 years.

Back when I was diagnosed none of these organisations existed.

Trained Advocates

All of this has been made possible through breast cancer advocacy. The power of the collective use of voices of those affected by breast cancer to campaign, lobby and petition for change to happen.

The breast cancer movement took its lead from the highly successful AID lobby group and translated it into the breast cancer cause.

I was fortunate to be chosen to undertake the Advocacy & Science Training provided by the National Health & Medical Research Council (NHMRC) – it was intensive and at times my poor little brain struggled to cope.

BUT….it was highly valuable.

It gave us, as advocates, the skills needed to lobby and to ensure we were able to represent consumers in a logical, rational and educated way rather than be operating on a purely emotional basis. Facts always win the argument!

Where am I going with this?

For a little while now I have been a tad concerned that the breast cancer advocacy movement is losing momentum.

I mean, there are so many great facilities these days that are taken for granted by those who access them. Services that what we fought for.

Not for ourselves but for others who would come down the path after us. Those who had yet to be diagnosed with breast cancer….like my young daughter and my nieces who are surrounded by a family history of this insidious disease.

It’s GREAT that we have all the services BUT here’s the thing…

Unless we keep our eyes on the ball they could just vanish. Some already have – almost without a murmur.

Why is that?

In my opinion, and you may like to disagree – that’s quite fine…we have mainly forgotten, and many have never understood how difficult it was to gain those services.

The Survivor Story

The survivor story is powerful. Couple that with advocacy training and you have an unstoppable force to promote breast cancer awareness and education by personalising the statistics.

I am blessed to be a survivor, to have been in the company of wonderful pioneers of the breast cancer movement – Lyn Swinburn AM, Sally Crossing AM (dec), Anna Wellings Booth OAM (dec), Susan Tulley, Penny LaSette and Tere Jaensch (dec), and Carol Bishop.

It is important for survivors to lend their voices (not just money), to ensure that breast cancer remains firmly in the public eye until such a time a cure is found.

The pioneers and advocates from those early years are growing old. After all, it’s been 20 years for me, and more for each of those wonderful women I’ve named above.

A new generation of consumer advocates is needed. I am worried when I hear women say “We are not interested. We just want to get on with our lives.”

I can appreciate that sentiment.

But imagine if all of those pioneering advocates had not spoken up, had not taken those first steps? We would not have what we have today.

The Future

For some years now I’ve been worried about consumer advocacy – or to be more precise the apparent lack of successors and lack of interest by many consumers.

I guess because I have an established profile people tend to call me when they need something or want to pick my brains. More often than not, it’s to alert me to something that is not as it should be at a clinic, chemo unit, doctor etc.

My response is always to urge them to speak out and make their voice heard. To talk to the staff,  to document their concern, to contact their local advocacy group. and if necessary to lodge a complaint.

Unfortunately, most choose not to. I hear things like “Well, my treatment is over/almost over now. So I don’t really need to worry about it.” or “I really don’t feel confident saying something”. 

I worry about what service might be lost next. After all, every cause is a good cause. The dollars flow where the demands exist and where the spotlight is shone. There is only a finite amount of money to go around for research and services.

As we all know, change only happens when someone sets the ball in motion. I am no longer at the coalface – I believe we need new blood, that change is good. New faces need to be encouraged to step up.

So what am I going to do about it?

I’ve learnt a few lessons along this journey of life. And the biggest one is if you want something to happen you need to be prepared to take ACTION.

SO…the action I am taking is this…

Facebook and social media did not exist back when I was diagnosed – yep 20 years ago was the times of the dinosaur. Although I did have a mobile phone – a Motorola.

But this dragon has learnt to embrace the opportunities that new technology offers us.  What I’m doing from now until the end of October –  Breast Cancer Month – is sharing a trip down Memory Lane – 20 years of breast cancer advocacy based on my experiences, memories and contributions from some of the amazing people I’ve met along the way.

I hope it will stir up some attention and inspire another generation to take up the advocacy mantle. Along the way, I’ll be sharing some great memories of the people and places that have influenced me and have shaped the breast cancer movement. It was hard work but it was also lots of FUN!

Michelle

PS – if you have a story to share of breast cancer advocacy within your community, please get in touch as I’ll be hosting guests too.

 

 

 

 

AUSTRALIAN BREAST CANCER DAY 2015 – a time for reflection

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.

ABC DAY 2015Over 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.

Ellie, Alexa and Sasha
Ellie, Alexa (age 14) and Sasha (age 21)

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.

Michelle

“Seize the moment. Remember all those women on the ‘Titanic’ who waved off the dessert cart.” ― Erma Bombeck

The Dragons Are Coming To Docklands

Incredible to think that in just over 6 weeks the Australian dragon boat community will be converging on the Melbourne Docklands! Dragon Boats Victoria could not have chosen a more spectacular venue for this spectacular sport and I know how very proud they are as host state to the 2012 Championships, to have this opportunity to show case the vibrant attractions of the Docklands.

As an honorary Life Member of the Australian Dragon Boat Federation, I will definitely be dock-side! I’m excited at the prospect of seeing 2,500 dragon boat athletes from across the nation thrash their way through the waters of the Docklands, for the coveted title of Australian Dragon Boat Champions.

When I first became a dragon boat paddler almost 14 years ago, the sport was still very much in its infancy here, with little general public awareness and even less media interest. It is due to Dragons Abreast, the breast cancer survivor movement of individuals post breast cancer treatment paddling dragon boats that the sport in Australia has spread to so many regional areas of this vast country.  Whilst Dragons Abreast may have been the vanguard in regional Australia, the clubs today are thriving entities embracing the whole of local communities with paddlers ranging from juniors through to great grand dragons in their late 7o‘s and even 80’s. Dragon boating is the fastest growing team water sport in Australia and, indeed the world and this is no doubt to its wide appeal and accessibility to all age ranges regardless of fitness levels.

The fast and furious racing action combined with the colourful spectacle of majestic dragon heads surging across the water to the rhythmic beat of the drums has captured the interest and imagination of both the public and the media. There is no more visually dynamic sport on, or off, the water. Okay, I am biased!

Spectators at Docklands will be treated to lots of eye candy from our premier men and women, be amazed at the fitness of our over 60’s category of racing and generally admire the spectacular prowess of pure muscle power, grit and determination which powers the majestic crafts as they race for the finish line with only a dragons whisker separating the positioning. I sincerely hope that Melburnians will come along and witness the extraordinary carnival atmosphere that surrounds a Dragon Boat Championship event – it is not very often that dragon boat racing of this calibre takes place right in the centre of a city.

Dragon Boats Victoria’s Organising Committee (working in partnership with the Australian Dragon Boat Federation) for the 2012 Australian Dragon Boat Championships, promise us the largest turn out ever this year, in both elite athlete competitor numbers and in spectator numbers. It is the first championships event to be held over 5 days (Sat. 31st March – Thurs. 5th April) – a testament to the growth and popularity of the sport.

Docklands will be rife with Dragon Fever! 2012 is the Year of the Water Dragon in the Chinese calendar and the sport’s rich Chinese origins will be honoured with spectacular opening and closing ceremonies. I hope Melbourne is ready because the Dragons Are Coming – in their thousands!!

The Dragons are Coming to Melbourne 31 March – 5 April 2012 http://www.dragonboatsvictoria.com.au/nat/

Michelle