The Lucky One

by Krystal Barter

  Things came to a head early in 2013 when I was due to apply for DGR (deductible gift-recipient) status with the tax office. Previously, Pink Hope had always sat under the umbrella of the NBCF but now I had to decide whether or not we thought we could make it on our own. After several weeks of agonising I finally bit the bullet and applied (and was granted) DGR status. Up until that week, however, I wasn’t sure I had made the right decision. Funds were dangerously low, benefactors were thin on the ground and, for much of the year, I wondered whether our DGR status was worth the paper it was written on.

  The instant the ‘Jolie Gene’ hit the headlines, however, Pink Hope’s future began to look up. Amazing publicity and media attention aside, our funding increased markedly. Then, there was the fact that so many others in the sector rallied around us in support. The McGrath Foundation, for instance, showed such generosity of spirit by directing any media enquiries our way. (This is one of Australia’s leading breast cancer support organisations, founded by cricketer Glenn McGrath in memory of his amazing wife, Jane McGrath, who died of breast cancer in 2008. While the foundation doesn’t strictly look after those in the high-risk community, it could easily have swallowed up some of the media attention that was on offer the week Angelina Jolie announced her mastectomy. Instead, the McGrath Foundation pointed the media in our direction and I’ll always be grateful for the support it showed us back then.) Cancer Australia, a government-run body headed up by Professor Helen Zorbas AO, did likewise.

  Then there was the (frankly heart-warming) response from Pink Hope’s celebrity supporters and ambassadors. The divine Mia Freedman ran our story on her website, mamamia, before taking the time to email me personally: You’ve been such a beacon of light and—yes, hope this week. Congratulations on all that you’ve done and the rightful attention you’ve been receiving, xxxxxx

  But most amazing of all was the response from the high-risk women of Australia; the very women Pink Hope was created to help. Our membership base doubled in the five days after Angelina’s announcement, and the number of families accessing our charity increased by more than 700 per cent. Women from all over the country got in touch to share their stories or join our community or just show support for others. It was truly something to behold. I couldn’t keep up with all the messages of love and encouragement and, each and every time my inbox pinged or my phone vibrated, I silently thanked Angelina for what she’d done.

  And of all the messages we received at Pink Hope that week, this one from Gena (who is also BRCA1 mutation positive) will stick with me forever:

  Dear Pink Hope,

  I have just spent the best part of the day reading all the information on this great website. How is it that I have all day to do this? Well, I am in hospital recovering from a bilateral mastectomy that was performed four days ago. Performed, in fact, on the very day that Angelina made her own mastectomy announcement to the world. The timing was opportune and I am thank ful for the sudden interest in the subject. Previously, I had only told my close friends and some family members that I was undertaking a mastectomy. I was evasive to my work colleagues and most people in my wider circle just thought I was being hospitalised for ‘women’s problems’.

  After Angelina’s story broke I thought to myself: ‘Why am I being secretive? Why can’t I, like Angelina, tell the world?’ So I did.

  Twelve hours after my operation, when I was high on medication and wide awake at 3 a.m., I started to write my story and I’ve since published it on my Facebook page. The loving, supportive comments I have received from friends (and from strangers all over the globe) has been a tower of strength for me. It even gave me the courage to share my story with my work colleagues. Again, the response has been amazing and I know this has helped me immensely in my psychological and physical recovery.

  I was watching the Morning show on Friday when Krystal was being interviewed about how she set up Pink Hope. I immediately wrote the website details down. I only wish I had seen the site months ago, in the lead-up to my mastectomy, as I was accessing lots of information on the web but it was mostly from the United States (and not in the user-friendly format of Pink Hope’s site).

  The information you provide had been invaluable and the personal stories of your members have really made me feel part of a special group. Some of the people I’ve already met through Pink Hope are going to the same clinics and hospitals as I am and I would love to be able to meet up with them and have a chat over coffee. Who knows? Maybe I will.

  Keep up the great work and please let me know how I can help or contribute to this wonderful resource.

  Regards

  Gena

  CHAPTER 23

  It seems fitting to end this book with spring. To end with Sydney sunshine and southerly busters and the sight of pink galahs on the front lawn, growing fat and content on grass seeds. Because, that September in 2013, I felt like my own personal springtime had come.

  I went to America for a second time, feeling lighter and happier than I had in months. My health was good and my breasts had been problem-free for a while. Mum was all-set for planned surgery on her abdomen in November and Nan was soldiering on. And the kids were as wonderfully raucous as ever. Then, the (pink) icing on the cake? Pink Hope was looking viable once again. So when I boarded a plane to the US that spring, I was feeling optimistic.

  I was headed to the Land of the Free and the Home of the Brave to see Lindsay. She had invited me back to Chicago to speak at FabFest, an event she dreamed up herself. FabFest is both a fundraiser and a way for women affected by hereditary cancer to celebrate health and wellbeing. It’s an annual, full-day event offering exercise classes, health seminars, goal-setting workshops and spa treatments, all centred on the idea of living a fabulous life. And the best bit? This year it was hosted by my hero, Giuliana Rancic (or ‘G’ as she was to me now, given I’d stalked her so much she had no choice but to be my friend).

  As the name promised, FabFest was fabulous (so much so that I hope to bring it to Australia one day for all our Pink Hope ladies and their families). My trip, more broadly, was just as brilliant. Albeit a bit of a whirlwind. I took eight flights in two weeks, which is not bad for someone who, only a few years earlier, was almost too afraid to get on a plane. I spent time in Chicago and in New York (including, of course, a stop-off in my spiritual home: Broadway to watch Orlando in Romeo and Juliet. Little did I know I would get to meet him backstage. Highlight!).

  Then, two days before I was due to fly home, I woke up to several messages and emails to say that my friend Sarah-Jane Woodford had died. Beautiful, talented, generous Sarah-Jane. Sarah-Jane who was a HR guru and a brand new mum. Dead so soon. Taken by a cancer that had started in her breast and which then spread to her spine and eventually her brain.

  I was shattered.

  Of course, so were Sarah-Jane’s family and friends. When my friends at Pink Hope phoned me in Chicago to tell me the devastating news, they were in deep shock.

  ‘We thought she still had months to live,’ they kept saying. ‘How did it happen so fast?’

  And in many ways it was fast.

  Sarah-Jane’s life ended not just months before doctors predicted it would, but years before it ever should have. When her cancer was first diagnosed, it hadn’t yet reached her lymph nodes but it was triple negative so her prognosis was not good. Yet, within just two years, Sarah-Jane went from being optimistic about beating cancer, to being told there was nothing anyone could do. She was just 35 years old when she died.

  It seems incomprehensible that her poor, poor mum should have to bury both her daughters, and so close together. But in the end Sarah-Jane deteriorated very quickly. She didn’t even make it to the wedding she’d planned. Instead she married her husband—the man she’d intended to grow old with—in a service held at her hospice bedside.

  Perhaps most heartbreaking of all, though, is the twelve-month-old son Sarah-Jane leaves behind. A son who is too young to know what’s going on but who may carry the BRCA1 mut
ation positive gene, just like his mother and his aunt did before him.

  And that is the true horror of hereditary cancer. We’re talking about families who have lost their mums and their nans and their aunts and their sisters and their cousins and who then face the prospect of one day losing their precious new generation, too. It’s almost too much to bear. It’s also an incredibly complex and difficult scientific issue, and one which requires the dedication of our greatest medical minds, plus all the resources we can throw at it. This is why organisations like Pink Hope are so important and why our work will only be done once every family knows their risks and acts upon that knowledge.

  And, in the meantime, we’re burying beautiful Sarah-Jane next Monday.

  While Sarah-Jane’s death was not the catalyst for my decision, it certainly focused my mind: I have decided to undergo ovarian surgery. It was something I’d been thinking about for a while now; had been advised by all the experts to do for some time. An ‘oophorectomy’, they call it. ‘Ovary and out’, I’m calling it. Because that’s the aim. Removing my ovaries means out with the risk of ovarian cancer.

  I’m starting with one ovary, not both, because the cancer-minimising effect is still significant and because I’m not ready to go into full-blown menopause just yet. (Not when I’m only 30 years old. And not when some studies suggest early menopause can reduce your lifespan by up to five years. I’m trying to prolong my life, not shorten it.) But I am having my fallopian tubes removed, too—because just like breast cancer so often starts in nipple ducts, ovarian cancers may start in the fallopian tubes.

  Of course, removing even one ovary means I’ll no longer be able to fall pregnant naturally and this is something Chris and I have thought long and hard about. Chris is much more ready to take this step than I am. His reasoning: we have three happy, healthy children; let’s make sure their mum stays happy and healthy, too. And while I do agree, I can’t promise I won’t regret my decision in future moments of unbearable cluckiness.

  But when booties and bunny rugs beckon, I’ll only need to remind myself of the stats to know we made the right decision. Like, while around 1.4 per cent of women in the general population will develop ovarian cancer in their lifetime, this can be up to 60 per cent for those of us who are BRCA mutation positive. And at least 15 per cent of epithelial ovarian cancers, the most common type, are thought to be the result of inheriting a faulty gene.

  Then, there’s the fact that the mortality reduction associated with this type of surgery is massive. One study showed that women who underwent bilateral prophylactic salpingo-oophorectomy (i.e. they had both ovaries and both fallopian tubes removed) reduced their risk of dying from ovarian cancer by almost 50 per cent.

  Ovarian cancer is a silent killer. Often, by the time you know you’ve got it, there’s not much anyone can do. And, as if the survival statistics associated with ovarian cancer are not scary enough, my family seems to specialise in the breast and ovarian cancer double-act. My nan’s cousin died of ovarian cancer at just 35 years old and there are numerous others dotted throughout our family tree that suffered the same fate. My own mum has had major issues with endometriosis and with ovarian tumours throughout her life. It’s like, once a woman in our family gets breast cancer, then that cancer seems pre-programmed to head south to her ovaries. I’m not about to suffer that same fate if I can help it.

  So, I have my meeting with Dr Greg Gard next month. He’s the gynaecological oncologist who performed my mum’s ovarian surgery and he specialises in familial cancer. I might hit him up for a family discount.

  Then, assuming my surgery goes well and there are no signs of any pre-cancerous activity in and around my ovaries, I’m going to wait until I’m in my late thirties and then I’ll have my other ovary removed, too. There’s no point hanging onto it for posterity, after all.

  This might sound cavalier; might even sound brave. But not when you consider the immense bravery of women like Sarah—women who battled cancer to the bitter end. Back when I was 22 and I first found out I was BRCA mutation positive, I was faced with three options. Path one? I could bury my head in the sand and forget I ever knew what a faulty gene was. (For me, this was never a long-term option.) Path two: I could opt for screening and early detection and commit myself to a lifetime of vigilance. Of course, this came with a lifetime of living on perpetual tenterhooks. Or path three: I could put on a surgical gown, have everything whipped out that could potentially (eventually?) kill me, and then get on with the business of enjoying my life. It’s not brave to have prophylactic surgery; in my case, it’s just sensible.

  But this is my story and my path and it may not be the right one for others in similar situations. Every family that faces hereditary cancer is different in its own special way. They have their own stories; their own paths to choose. All I urge is that, if you do run the risk of familial cancer or if you know someone who does, then be aware, be informed, be proactive and be vigilant. Because nowadays we’re the lucky ones who know about it and therefore get to do something about it.

  In the end, I’m nobody. Just a mum from the Northern Beaches. I’m not a celebrity, I’m not a millionaire; I’m just passionate about something and determined to see that thing through. But breaking my family’s cancer curse, and then creating Pink Hope, these things have given me cause to see my life as lucky.

  I may have had some rough times throughout my life. My teenage years were no picnic, that’s for sure. But I eventually worked out how to change my path, change my direction. I’ve learnt in life that you should only ever make time for the people that lift you up and encourage you to be the best you can be. My family have done just that. They’ve stuck by me always and waited patiently until I emerged as the daughter, the sister, the wife and the mother they always knew I would become.

  And there are good times ahead.

  My brother underwent genetic mutation testing and his test came back negative for the BRCA1 gene mutation, making his daughter (my niece) the first female in 100 years in our direct lineage not to be affected by our family’s gene fault.

  For me? I know the future is not without its challenges. There’s still a 1–2 per cent chance I could get breast cancer one day. And, far worse than that, is the 50 per cent likelihood that each of my beautiful kids could be BRCA1 mutation positive. But this is something I try not to dwell on. They are beautiful, healthy kids at the moment and that’s the most which any parent can ever ask for.

  And, sure, I am undergoing ovarian surgery in the coming months, but this is something I’ll try to face with dignity and with optimism. Because if there’s one thing I’ve learned in this life, it’s that I’ve got so much to be optimistic about. I’d walk my same journey twenty times over—I’d live this life, with all its hardships and all my mistakes, over and over and over again—in order to have met Chris and to have had my three gorgeous children and to have had the mum and the dad and the nan that I have. Anything to have been born into the family that I have. We might be cursed, but we’re lucky to have each other. And I’m the luckiest of them all.

  Four generations: Nan Val, Mum, me and my beautiful daughter Bonnie (aged 6 months).

  Stacey Gadd and I were on 60 Minutes together.

  The day after my mastectomy in 2009 – definitely not my best angle.

  With Jye on his 1st birthday, just after my surgery, with a pillow for protection.

  Speaking at a Harper’s Bazaar event in conjunction with Women of Influence award win in 2011.

  Bumped into Joel Madden … yes! We have the sign with us at all times.

  Leaving Australia for the first time, headed for the Big Apple!

  Meeting Lindsay, who inspired me to found Pink Hope.

  In Central Park.

  Me and Lindsay, with Giuliana Rancic, at the FabFest conference in Chicago.

  Stacey Gadd, Karl Stefanovic and Rachael Rogan at the 2012 Bright Pink Lipstick Day Launch.

  Me with the beautiful Sarah-Jane.

  On Australi
a’s Next Top Model with Sarah Murdoch (I was a foot too short to be a contestant).

  A finalist at the Young Australian of the Year awards, with Premier Barry O’Farrell.

  Become a Pink Hope ambassador! A fun photoshoot for a cause that is close to heart.

  Our beautiful children: Bonnie (2), Jye (4), and Riley (7).

  ACKNOWLEDGEMENTS

  Mum/Dad – To my incredible parents, you waited patiently for your lost baby girl to find her way home. It took a while! But eventually I became the daughter you both deserved.

  My husband – To my amazing husband, Chris, you changed my life just by being in it. Starting my family with you was the single best decision of my life. I look at my beautiful children and I feel so grateful and lucky.

  To my babies – You make every day better, every decision more meaningful, every cuddle perfect. Being a parent isn’t the easiest job in the world but it’s by far the most rewarding.

  My grandparents – To my nans. You provided me with such love and compassion. You are my best friends. The happiest memories of my childhood have you both firmly planted in them.

  Lindsay Avner and Stacey Gadd – my BRCA sisters:

  Linds – When you answered my email it was the single most defining moment of my BRCA journey. ‘You are not alone’, you wrote to me. That day you made me feel a little less alone and scared and those words echo in everything I do with Pink Hope.

  Stacey – I will never forget talking on the phone to you on the night before my surgery. We were both nervous – I think there were a few laughs and tears! You are such a great friend. I hope you never underestimate the impact you have had on my journey.