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.

 

 

 

 

On My Bipartisan Soapbox

I am not a political animal, but I do have a number of friends heavily involved in politics on both sides of the fence. An election is in the air, both at Territory government and at the Federal level so there’s a more than the usual amount of door knocking and pamphlets in my letter box happening.

Yesterday morning I met the Prime Minister, Malcolm Turnbull, at an informal coffee catch up down at the fabulously located Cornucopia Restaurant.

20160517_092822
Tina MacFarlane, CLP Candidate for Lingiari, Michelle Hanton (me) standing.                Hon Malcolm Turnbull MP, PrimeMinister of Australia, Natasha Griggs MP, Federal Member for Solomon

It was interesting to watch the entourage at work, and the masses of camera’s that clicked away madly, especially around the babies! Admittedly, the kids were very cute and well behaved.

So what was I doing down there?

Well, the PM was with our current sitting member Natasha Griggs to promise a PET scanner for the Alan Walker Cancer Centre if they are re-elected. I was invited as a breast cancer survivor and the rest of the small group of guests were also those whose lives have been touched by cancer.

A PET scanner is a very expensive piece of equipment – millions of dollars – and we are the only jurisdiction in Australia without one which means patients need to travel interstate to access such diagnostic equipment.

The Opposition is similarly promising the same – so regardless of who wins the election, it seems like we’ll get the PET scanner. I certainly hope so.

The thing that I find so fascinating is that if both parties are able to promise a PET scanner, then how come it has not been provided to date?

I am not as closely involved in the advocacy world as I once was, so I am not sure of all the details around reasons why, but the one thing I do know is:

  • When people combine to make their voices heard things start to happen
  • Often it takes years of lobbying and advocacy to bring something to fruition
  • Advocates are vital and advocacy needs to be above politics

I did ask the PM if the felt the role of the advocate had made a difference to services. He confirmed that a patient centred approach was always the way to go – not exactly his words, more a case of me paraphrasing.

When I was diagnosed, almost 19 years ago, we had no oncologist, no breast care nurses, no McGrath Foundation and no Alan Walker Centre – today we have all of these things thanks to lots of lobbying and persistence all round by a vast number of individuals. Several of them have lost their battles and not benefitted from the improvements to services and conditions, but those that follow do.

From a personal perspective, the work I have done as an advocate has always been driven by the desire to see better services in place for my daughter and my nieces.

As we said back when we started our campaigning for breast cancer awareness (back in 1998), it’s not about us, it’s about those who follow down this pathway. It’s also about working in cooperation with others who will benefit from the same services.

Cancer is not about politics. It is bipartisan and does not discriminate.  Allocation of funding should come regardless of who wins office at the next election.

It is also my personal belief that we need to continue to develop advocates who will continue the fight to ensure cancer patients are provided with the best services and conditions possible.

Michelle

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

Vale Anna Wellings Booth OAM

Anna. My courageous, compassionate, humorous and all round simply amazing friend is with us no more.

I received this news on Friday afternoon here in Ecija. The message pinged onto my phone as I was waiting for my class of students to arrive so I really didn’t have the opportunity to properly absorb the news. I was shocked and the next 4 hours of my classes passed in a kind of blur.

Anna had been on my mind a lot lately and it was only last week that I emailed saying I hoped she was well and not laid up in the hospital with some ailment or other.

You see Anna has had all kinds of issues with her health but she never let them stop her doing what she wanted – at least not until more recently.

Anna used to tell me her ailments were a result of a ‘life well lived’ – she had a great sense of adventure and was game for almost anything. Anna was resilient and always bounced back from whatever ailed her.

Anna was a do-er and could get almost anything done.

She had the great knack of being able to charm people and gently persuade them to do things they perhaps had not exactly planned to do. A case in point being that very first Field of Women that was planted in Canberra back in 1998 and then the establishment of Dragons Abreast ACT a year later.

Anna and I shared many memorable moments and experiences together over the years. We laughed and we cried together many times over the last 16 years – mostly we laughed.

Some of my standout memories are:

  • the trip to Niagra on the Lake where we stayed in a little B &B, sat out in the garden with a picnic and squirrels scampering around us as we dreamt of bringing the story of Dragons Abreast into print,
  • Anna tearing her hair out in Caloundra as she (wo)manned the phones and coordinated buses for 2000 pink paddlers.

My most recent memory was a visit to Canberra when I was there for the Lifeline Conference earlier this year.

I had very limited time so asked Anna if she would like to perhaps meet for breakfast at my hotel. In response, I received an email saying she’d love breakfast but was in the hospital so could I go there instead.

So at 7 am on a cold, wet Canberra morning, when it was really a bit too early for visitors, Anna and I sat in the hospital corridor and exchanged news for an hour and a half before I had to dash away for the start of the conference. That was the last time I would see my dear friend.

Anna was one of a kind

She always had a twinkle in her eye, was big of heart, wonderful with words, a diplomat and an inspiration to all who knew her.

Anna never complained instead she just rolled up her sleeves, stuck her tongue out to one side if she was concentrating, grabbed her walking stick and off she went!

I am so privileged to have been able to call her my friend. I am a better person for having known Anna – she was one of very special lady and there are no words that can adequately describe this amazing woman who was a wife, a mother, an advocate for causes she believed in, a gentle guiding hand, a wise counsellor, and an inspiration to many and an all-round incredible, irreplaceable, fantastic person who enjoyed a glass of red wine.

Anna, rest in peace now.

Thank you for friendship, inspiration and support – you’ll live in my heart forever.

Love

Michelle

 

A wonderful world……..thank you Abreast In A Boat

What a wonderful surprise it was last night to walk into Ca’de Ven (an amazing local wine bar) and hear a voice yell out “Michelle. Michelle Hanton”- I turned around and there was Cheryl Watson coming towards me along with Juanita Pegler. It is almost seven years since we last saw each other. We had no idea we were all going to be in Ravenna so it was a delight to catch up with these amazing women whom I first met in 2002 when I put together the Internationally Abreast (IA) team for the World Club Crews being held in Rome. Juanita and Cheryl along with Deb Thiessen and Linda Acosta were the Abreast In A Boat representatives from Vancouver.

IA team members - Rome 2002 reunited in Ravenna 2014
IA team members from Rome 2002 reunited in Ravenna 2014 – Juanita, Michelle & Cheryl

It was soooo fantastic to see the girls again. We hugged and reminisced about those early days and that incredible time we had in Rome. It was also where I met Donna Leon, as she was there to film our journey for her program They’ve Got Game – Water Works.

The world of dragon boating for breast cancer survivors has changed so much since those early days but the friendships made by those of us who were pioneers remain strong. It’s funny that in the last 2 months I’ve also had a reunion with Elspeth Humphries – who was also in the IA boat in Rome – she swept the 2000 metre race – first time a breast cancer survivor crew took on that race – and today it is so common place for survivor crews to compete and indeed, to do well, in these races. Janelle Gamble, another of our Internationally Abreast originals will also be here but this time as an IDBF official and I will be sweep for the Waterfront Warriors team.

If it was not for breast cancer and Abreast In A Boat I would not be sitting here today writing this bog. Funny how the darkest moments in our lives can turn into some of the very best opportunities. As they saying goes, what doesn’t kill you makes you stronger. I have to say, based on what has happened in my life, this is most certainly true.  Before signing off this blog I also want to make a special mention and say, I always remember with great affection, two special women who have lost their battle with breast cancer, Sandy Smith from Abreast In A Boat who was a guiding light in setting up Dragons Abreast in Australia, and of course the unforgettable Orlanda Capelli who became our drummer in Rome and the then went on to establish the first Italian breast cancer survivor team.

Michelle