A sense of responsibility

November 2016

My genetic make up gave me an increased chance and ultimate diagnosis of breast cancer.

It has also given me a sense of responsibility.

That sense of responsibility led to an application to become a part of the Australia New Zealand Breast Cancer Trials Group (ANZBCTG) IMPACT Advocate Program and an opportunity to spend an incredible week on the Gold Coast hearing from world-leading breast cancer researches, scientists and clinicians.

Along with four amazing fellow survivors from around Australia and New Zealand, I attended the Clinical Oncology Society of Australia (COSA) 43rd Annual Scientific Meeting that was held in conjunction with the ANZBCTG’s 38th Annual Scientific Meeting for the first time since 2010.

 

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With fellow 2016 ANZBCTG IMPACT Advocate members Isabelle, Josie, Greer and Thelma.

 

The aim of IMPACT is to recognise the important contributions made by women to breast cancer clinical trials research and to offer those who are part of the program the opportunity to learn more about past, present and future research so we can advocate for increased participation in breast cancer clinical trials in the broader community.

The chemotherapy regime I was prescribed was part of a clinical trial. When my oncologist first mentioned it to me all I could hear was “Would you like to be a guinea pig?”

I soon learnt that thoughts could not have been further from the truth and post-conference I am more intrigued than ever about clinical trials and the impact they can have on screening, diagnosis, treatment and survivorship in the not-so-distant future.

That’s the kind of knowledge I see as power and my ‘responsibility’ as a survivor to pass on.

Privileged is an understatement to explain how I felt being selected to be a part of this join conference that offered presenters from around the world.

Those presenters included Australia’s own Dr Shom Goel who trained at the University of Adelaide but now works in the US as a physician-scientist at the Dana-Farber Cancer Institute and Harvard Medical School in Boston as well as Dr Laura Esserman, one of the most engaging and passionate speakers I have ever heard (on any topic). Dr Esserman is recognised as one of America’s leading experts in breast cancer research and treatment and was recently named in the TIME 100 most influential people in America.

 

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Dr Laura Esserman

 

They are just two of the names I had never heard of before heading to the conference — and they are now two names I will never forget.

Their impact was felt not only because of the way in which they spoke about cancer research to the clinicians in the room, but the way in which their presentations always had an underlying tone of putting patients at the forefront of any research or treatment.

The pair continued to re-iterate throughout their numerous conference presentations that the thinking in cancer care needs a momentum shift with a cautious “less can be more” approach. Individualised care and sparing patients invasive treatments that they don’t need are areas this amazing pair focussed on when it came to advanced cancer research.

One of the sentences I heard during my treatment that will forever stick with me came from my radiation oncologist. Upon review of my ongoing care (following chemotherapy and mastectomy) the Dr recommended radiotherapy. Upon recommending six weeks daily radiotherapy she said to me, “I really hope that in 10 years time it’s proven that you didn’t need radiotherapy, but at this point in time it should be a part of your treatment if it is going to be as comprehensive as possible.”

I hope she is proven wrong too so less and less patients have to endure the daily rays of radiotherapy and it’s exhausting and physically-scarring side effects. After spending hours upon hours in lecture theatres at the COSA-ANZBCTG Joint Annual Scientific Meeting listening to professors, researchers, physicians, scientists, psychologists, dieticians and surgeons — I am filled with so much hope that their dedication to the cause will start to lead to less “over treatment” in breast cancer patients.

Professor Bruce Mann, a surgical oncologist at the Royal Melbourne and Royal Women’s Hospital left us survivors with even more faith in the work being done in the breast cancer setting. He said, “It is east to get focussed on the research and forget about the patients. But often it’s those patients, whether it be in the clinic or as part of a consumer group, who remind you why you do the research.”

 

 

New boobs and new friends

The air bags are out and the implants are in! Too much information — sorry!

It’s now been five weeks since my most recent surgery and hopefully one of my last. This was a pretty involved one although it only meant two days in hospital which was amazing but brilliant.

A 6am hospital admission was followed by a visit from my reconstruction surgeon who drew all over my chest with a permanent marker before I was wheeled down to pre-op where I was met by my general surgeon and the anaesthetist.

The general surgeon had his turn first, removing my ovaries and tubes – a decision we made based on the fact that I have the BRCA2 gene, which increases risk of developing ovarian cancer.

Not that I was aware of the changeover as I was well and truly off with the operating theatre fairies, but the next surgeon then came in to remove my the air expanders that had been in my chest since January and had totally outstayed their welcome.

They were bloody awful things and I was ready for them to find their way into the rubbish bin. The implants are a lot softer and more natural and I can now even sleep on my side – which is sheer bliss!

Purple Brad day June 2016
At Nicola Peachey’s bootcamp with Sharon for Purple Bra Day

 

In the weeks following this, my fourth surgery since my breast cancer diagnosis in October 2014, bootcamp called. I’d never done a class before and the only reason for this attempt was to support fellow breast cancer survivor Nicola Peachey who hosted the event to raise money for Breast Cancer Care WA’s Purple Bra Day.

Nicola and I met in June last year when I spoke at Breast Cancer Network Australia’s Pink Lady luncheon. She came up and introduced herself and I will be forever grateful that she did. She’s been an amazing support over the past few months.

Incredibly, at the bootcamp, I ran into another gorgeous woman who I had met (although she was a lot clearer about our first meeting than I was). Sharon re-introduced herself to me. We were both at a Look Good Feel Better workshop last year. Now we both had a head full of hair (check out mine below) and were coming out the other side of treatment stages of our life battle. People come into your life for many reasons, and these two have certainly entered mine to help with my sanity! They are absolute gems!

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My hair is getting longer — woohoooo!!

 

From here there may be some ‘minor’ surgeries but they are more for cosmetic purposes.

Most importantly our little family of four is counting down the days until we head off overseas for four weeks. In 82 days, 2 hours, 38 minutes and 22 seconds (the Countdown app on my phone is very specific) we’ll be on our way to the USA. We all need something to focus on and we can’t wait to create some more amazing family memories.

Finding the right words a year on

It’s got to the point where I dislike the word ‘milestone’ almost as much as the word ‘journey’.

In my working life as a sports journalist milestones are mostly used to mark a significant achievement for a player – usually game tally milestones. The greater the number, 100, 150, 200 or more, the more lauded the milestone.

In my personal life, in particular when it comes to analysing my health, milestones seem to be used to reflect the next stage of your cancer ‘journey’ having come to an end or when you had to suffer through another part of this energy-sapping and emotionally-draining disease.

Two weeks ago a major ‘milestone’ was noted (not really celebrated cos that just didn’t feel right) when May 6, 2016 marked a year since my final chemo treatment. The fact that my chemo schedule took seven months from start to finish is almost forgotten as the focus goes on the end and not the bits in between!

 

The hair journey tells the story of the first milestone

 

Although it is a date that will always been tinged with sadness as it was the same day my husband’s mum, my much-loved mother-in-law passed away.

As I prepare for another round of surgery this week, another milestone is creeping up.

It’s nearly a year since my first operation. Nearly a year since I was first truly challenged to deal with the true physical assault this disease would have on me by removing my right breast.

Unless you have undergone a forced physical change of this magnitude it’s impossible to understand just what impact it has on your life – in every way!

Looking at yourself in the mirror and accepting the image being reflected is nothing short of heartache. And it’s there everyday. But it’s better than the alternative and not being given a chance to rid my body of this disease and continue to watch my children grow and learn and become gorgeous little humans.

Speaking of my babies, they both amaze me and surprise me often with the way they have dealt with what has been thrust into their reality at such young ages. The little man has just been recognised publicly by Breast Cancer Care WA in their latest Spirit Newsletter for his fundraising efforts. We were at a final last year between Fremantle and Hawthorn and he went out scrounging discarded AFL Records after the game as I enjoyed a glass of bubbles in the Media Room. He came back with about 10 and just as I was wondering what on earth we were going to do with them he said “I’m going to sell them to raise money for breast cancer.”

My beautiful boy with his fundraising rewards

 

Needless to say I burst into tears and there weren’t many dry eyes in the room when I explained my water works.

They are very special my babies and while they are being exposed to the raw reality of having watching a parent go through this ‘journey’ they are learning amazing empathy and what it means to be a good, genuine person in this world!

 

Crazy Mother’s Day selfies

 

So as the milestones continue to come and go – we will mark them appropriately and reflect on what they mean – how far we have come and how hard we have fought.

I’ve continued to be blessed and surrounded by amazing people and a few of us got together to celebrate life and raise much-needed money for the McGrath Foundation at the Curtin Uni Wesley Football Club’s Pink Tiger Day. It was seriously one of the best days I’ve had in a long time!

 

Sharing an amazing day with some amazing women!

 

Surgery this week is to remove the air expanders that have turned my chest into a ridiculously uncomfortable, rock-hard wall, and insert permanent implants that will look a lot more like boobs and less like big, over-inflated air balloons stuck on the front of my body.

I’ll also have an oophorectomy (one of the new, favourite words I have picked up along the way) – which is the removal of my ovaries and tubes. That’s elective/preventative surgery we decided to go ahead with given my BRCA 2 genetic position.

Bring it on I say – it’ll drag me closer to my next ‘milestone’ and finally I’ll be able to buy some bras that actually fit (and not daggy old surgical bras either)!