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.
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 AIDS 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.
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, on Facebook, 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!
New Year’s Eve/Day means time for my annual update for all my friends and followers far and wide who are not on Facebook.
It’s been a year of many different adventures and challenges. But I’ve coped and am extremely fortunate to be enjoying good health and wonderfully supportive friends and family. I am truly blessed and very grateful.
The biggest news this year is that my brother has FINALLY got his Australian residency. What a nightmare that has been, but we got there in the end. Phew! The icing on the cake is that Moorish Cafe where he is Head Chef won two Gold Plates Awards at AHA awards. How good is that?
2017 saw lots of commuting. I stopped counting once I got to 30 trips between Darwin and Brisbane. They were pretty much all night flights.
Once upon a time (10 years ago!), I was easily able to make that night flight then go straight into a full day of work, but it’s getting harder each year not to need a nap when I get to the other end.
I’ve been spending more time in Qld as my parents are needing more support that it’s just not possible – nor is it fair – for my sister to handle alone. On the whole, they are both pretty well but Mum has slowed down a lot since her heart operation and Dad’s Alzheimers seems to be steady. But we just never know what each day is going to bring, so it’s important for us to be around for them as needed.
I’ve also been able to spend more time with my niece, Ellie, and we have a lovely little relationship going which is nice. Really nice. I’ve introduced her to outrigging which she’s very much enjoying – although she won’t get out of bed and come to the 5.30 am sessions with me – so we do afternoons when her school schedule permits. 2018 sees her entering Year 12, her final year at school.
Even though this has been a very hectic year, it has also been a year that has seen me spending more time with both the immediate and the extended Van Buerle family. Including two trips to Melbourne to see my cousin Derek who sadly passed away on the 9th May.
Sasha has her first e-book published. The Short Story Press Collection showcases the wide variety of genres that she tackles.
It’s been a long road and I know I’m biased, but I think she’s pretty talented. If you choose to check it out, she would be thrilled if you leave her a review on Amazon.
Her first novel is still doing the rounds of publishers and novel number 2 was completed in November 2017 as part of Nanowrimo. It’s about to go into the editing stage which is always the hardest part.
She edits for others on a professional basis, but to edit her own work is impossible.
Wayne continues to be troubled with his back and frustrated that he cannot be as active as he once was. This does not help with his mental health, but he is making good progress thanks to a great psychologist. Being close to his grandparents is also helping enormously in his recovery.
He occupies his time experimenting in the kitchen and has become a really good cook. In typical Wayne fashion, he is very exacting and hard on himself, but we love eating what he produces. No complaints from us. There are very few disasters, and I am most impressed by the array of dishes that he can turn his hand to!
Wayne & Sasha have settled nicely on Bribie. I have been here since mid-November without having needed to take any trips – it’s been good to stay put for a bit! I still have not unpacked all my books, and at times struggle to find where I have put things in the cupboards.
Bali was another highlight in 2017 – two trips for the Refresh, Reframe & Relax Sojourns that I co-lead with Andrea Wicking. Although it is technically “work”, it is also most enjoyable for me.
Christmas this year was a very first time experience for me. We celebrated on Bribie Island and even though Mum and Dad have lived here for 16 years, whenever I have been in Australia it’s always been celebrated in Darwin with my cousin Cheryl, husband Darryl and son Jonathon plus Mum, Dad, Yvonne and Ellie made the trip to Darwin a few times over the years. In 2017everyone made the trek to Bribie – so it was same same but different – so nice!
My brother, Robert, also flew in on Christmas day, so it was a real family gathering.
New traditions have been started in 2017, and I think going down to the Pumicestone Passage for a midnight swim whilst watching the fireworks is going to be one of them.
2018 is shaping up to be a big year already and one of my key resolutions this year is to be doing a lot more personal writing – as it has always been one of my great loves.
May 2018 see you blessed with great health and much happiness.
I was keen to hear it because a part of my heart belongs in the Middle East. The land of my childhood.
The Muslim kids of my childhood are not what we read about in the press. The Muslim people I know are all kind, generous individuals. So you can see how the title of Osamah’s book was bound to have caught my eye.
Now here is a man who knows how to use words. His first language was Arabic, but his English (learnt after he came to Australia as a 13 year old) is fluent. Yes, there’s a trace of accent, but that’s what makes us all unique – our accents.
It’s a shame there were not more attendees, but the audience that was there was very appreciative of what Osamah shared. He read excepts from his book, it had us in fits of laughter at times and at other points, I think it safe to say that we were all deeply moved by the horrific and unimaginable experiences he had suffered.
I guess the sad thing is that Osamah tale of living in a war zone is not unique.Although the way he has told his story is absolutely unique. In the book he shares real and raw experiences – yes, I stayed up late last night reading it. He’s a skilled storyteller and it’s a well paced book that’s easy to read.
Our world, and us as human beings, have committed so many atrocities. I think what makes it worse for me, is that these things continue to happen.
Surely to goodness we ought to have learnt our lessons from history? Yet, it seems we have not evolved enough. We keep repeating the same patterns.
Hmm – as I get older, I get more frustrated with how we are seem to be bounding ahead with technology, and yet humanity seems to be going out the window.
Hiding behind a keyboard, feeling the need to “conform” with popular (or at least what your circle seems to think is right) seems to be reaching epidemic proportions.
What happened to grit, to courage and having a backbone? Have we all gone soft?
We live in an affluent western country, yet it seems that those with less, have more moral fibre that those with more.
His father faced many challenges, yet retained a positive attitude and a very strong sense of what was the right thing to do despite all the setbacks and despite public opinion and pressures.
We hear these kinds of stories time after time. It’s encouraging. There is hope and we each have a part to play in keeping that flame flickering.
A lovely insight into what it was like to grow up in Darwin – thanks to Maisie Austin who features as a guest poster for our Lord Mayor this week.
Maisie, Austin OAM has been awarded The Order of Australia Medal, the Australian Sports Medal and inducted into the Northern Territory Sports Hall of Fame. I am honoured she has agreed to be my guest posters this week and shares her memories of Darwin and the uniqueness of what makes this place she calls home so very special.
Darwin is my home. It is unique, full of different nationalities, traditions, and cultures, where you can wear the same clothes all year round, with perhaps a cardigan or tracksuit pants on two or three days during the Dry Season.
The changes to Darwin have been many since my childhood days, from sharing a Sidney Williams hut with our extended family to now living in a 3-level house with sea views.
I lived at Parap Camp (now known as Stuart Park) since 1949 when my family returned to Darwin after having…
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Diary date for 2018 – looks like a great event!
It’s been a while since I came back to Australia and officially put my travel blogging on hold. However once in a while, I get to enjoy some pretty neat things in my home country, and with my recent move from the Northern Territory to Queensland, I’m getting to enjoy lots of new things.
SO I thought it might be cool to reignite The Wandering Writer once in a while, starting now.
The Joust of Things
This past weekend on Sunday the 9th of July, I had the amazing experience of visiting the Abbey Medieval Festival. I’ve always wanted the chance to go and see a medieval festival and it was such a treat to be able to go with two of my cousins.
I’m especially grateful to Hans Electrical Service here on Bribe Island who, as sponsors of the event, kindly gave me a free ticket.
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Have you noticed that good manners seem to be going (or have already gone) out the window?
Call me old fashioned but manners cost nothing. Simple little courtesies like saying thank you, asking pemission, standing up to offer your seat to someone who is more in need. These are all little things that take hardly any effort, yet just make our world a little nicer.
Don’t get me wrong, I’m all for equal rights.
I don’t expect a bloke to stand up to give me his seat. I am perfectly capable of opening my own doors, and standing up on a bus. BUT, what about heavily pregnant women, Dad’s with their arms full of shopping and a toddler in tow that they are juggling on public transport and so on the list goes.
Yes, I’m on my soap box this afternoon!
Have you noticed the amazing propensity, especially on social media, for people to be very opinioned?
Yes, we are all entitled to our own opinions and to freedom of speech.
BUT, it has got to the point where what is expressed is often downright hurtful and inconsiderate. I was always taught that if I did not have anything nice to say I should keep my mouth shut.
Even when expressing a negative opinion, there are right and wrong ways to go about this. Name calling, swearing and involving children has no place in this.
Are we a world that is fast losing our emotional sensitivity? Is there any wonder that bullying and depression abounds?
What do you think?
PS When someone does open the door for me – I simply say “Thank You” and smile – as opposed to biting their heads off!