The Lucky One

by Krystal Barter

  CHAPTER 9

  Since my BRCA1 diagnosis, I’ve met many (amazing) women who have faced the same fate as I have and each and every one has reacted differently. Some women like to keep the information to themselves, finding strength from sharing it with only their closest family and friends and priding themselves on the fact that the rest of the world would never know what they’re going through. Others are more public in their response, opening their arms wide to include everyone, even relative strangers, in their journey towards dealing with their BRCA1 status. I fell somewhere between the two. I leant on my family and close friends and thrived on their support; I needed it some days just as much as I needed air to breathe. But among my wider circle of friends and acquaintances, I kept the news of my cancer-courting status to myself. It wasn’t that I deliberately wanted to shut people out, or that I was being stoic in doing so. It was more that I relished those times when I didn’t have to think or talk about cancer and I could be plain old Krystal Barter, BC (Before Cancer-loomed-large-in-my-life).

  And yet I didn’t shut everybody out. What stopped me from falling completely into that first, more private, camp (and also the way in which I differed from that second group who opened up to their family and friends) was that I chose a third option: I went very, very public. That is, I went to the media with my BRCA1 status.

  At the time I was deciding whether or not to undergo genetic testing, my mum had agreed to an interview with the New Zealand Woman’s Weekly. It was to be a profile piece on Mum, written by journalist Wendy Colville, but one which told the broader story of our family’s cancer curse. To write the article Wendy had spoken at length with Mum over the phone about her battle with cancer and she’d been to visit Nan in Matamata to record her journey, too. (In the article, Wendy described Nan as ‘a warm and generous woman, a former farmer with grace and typical country hospitality. On the day I visit her in Matamata she whips up a packed lunch of asparagus rolls and homemade cake for my trip back to Auckland.’ We joked within the family that Wendy only included Nan in the article as an excuse to sample her amazing butter cake.) The only person missing from the article was me.

  So when Wendy phoned, just 24 hours after I’d received my BRCA1 diagnosis, I agreed to take part in her story. It might seem like a strange thing to do, especially for someone who couldn’t face telling the girls in her netball team, nor most of the people she invited to her 21st birthday only a year or so earlier. Yet, for me, sharing my story with the media was the most positive thing I could think of to do. It allowed me to take the devastating news of my BRCA1-positive mutation status and transform it into something life affirming by (hopefully) encouraging other people who were in similar situations. Or, at the very least, letting them know that they weren’t the only ones going through this and that they didn’t have to do it alone.

  I’d just like to add here that this attitude was definitely inherited from my mum. Shortly after Mum recovered from her double mastectomy in the 1990s, she began volunteering for the National Breast Cancer Foundation. She made me volunteer, too, much to my initial dismay, but I gradually grew to love my work there (although I never admitted that to Mum when I was a moody 14-year-old). We were featured in an article in New Idea magazine for our work and I was wildly embarrassed at the exposure. However, I eventually grew to be proud of what we’d done after I had strangers recognising me in public and telling me what a brave family we were and what a worthy cause we were helping. In this way, Mum taught me the power of harnessing the media for a good cause.

  When Wendy’s article went to print in New Zealand Woman’s Weekly, it did much to raise awareness about hereditary breast cancer. It explained the medical science behind the BRCA1 gene and revealed how I, too, carried this flawed (mutation) gene, just like my mother and my grandmother. Wendy wrote: ‘Twenty-four hours after the diagnosis Krystal sounds cheerful and upbeat, and says she won’t dwell on the result.’

  ‘At the moment I have too much going on in my life. I don’t really have time to sit down and think about it, which is a good thing,’ I was quoted as saying. ‘It just makes you want to live every day as if it’s your last. We’ve always had that motto. Even though you’ve got to make sure you can pay your bills, you’ve still got to enjoy yourself, because you might get hit by a car tomorrow. You’ve just got to enjoy life …’

  I don’t remember saying this to Wendy. In fact, five minutes after our conversation I couldn’t have told you anything I said to her during the hour-long interview. I think I was still in a daze after my diagnosis. But the final article captured exactly the message I wanted to send. Being BRCA1 mutation positive was not going to ruin our lives; it was not going to stop us from enjoying ourselves—because we wouldn’t let it.

  It was at this point that I decided: ‘You know what? If I can help just one other person, especially a person affected by hereditary breast cancer, by opening my life up to the media, well, then, it’s worth it.’

  That’s not to say talking to the media is the right thing for everyone to do. Becoming a pin-up girl for BRCA1 mutation status (as I inadvertently did) is not for everyone. Plus, of course, this meant that all my family and friends would soon know about my situation. Even total strangers would recognise me from media interviews and come up to chat to me as if they’d known me all my life.

  About a year after we’d spoken with New Zealand Woman’s Weekly, Mum and Nan and I agreed to an interview with Australia’s (now-defunct) Madison magazine. It was a similar sort of piece to the Woman’s Weekly story, but the fact it was published locally made for a much greater impact on us. I remember one day a woman tapped me on the shoulder as I waited in the express checkout lane with my barbecue chicken at the supermarket in Manly. She’d read my interview with Madison (and recognised my face from the accompanying photo shoot) and she wanted to tell me how heartbreaking my story was and what a brave thing I was doing by sharing my story so publicly. Incidents like these were hugely inspiring for me but, at the same time, incredibly surreal. I had never had a public profile of any description before now—never sought one—and so to have people recognise me at the supermarket as I bought a chook for dinner was a strange new experience for me.

  The other thing that I did at this time was to contact my local family cancer clinic to ask to be added to their register for high-risk screening. Family cancer clinics are run by the government and are usually located within public hospitals. They provide surveillance and treatment information, as well as counselling for families with a strong history of cancer. They also coordinate a register of at-risk individuals which allows family members to undergo medical tests, such as mammograms and, more recently, MRIs, much more regularly than a person with no history of cancer in their family, and at no or minimal cost. This was the list I needed to be on. My local clinic, the Hereditary Cancer Clinic, was located at the Prince of Wales Hospital (where I saw Dr Kathy Tucker and received my BRCA1 gene mutation diagnosis). Kathy had said that I wouldn’t even have to attend the clinic to be put on their register; it was simply a matter of phoning them. It sounded easy enough.

  ‘Good morning, Hereditary Cancer Clinic.’

  ‘Hello, I’m phoning to self-refer for your register for high-risk individuals,’ I said, putting on my best telephone voice. ‘Dr Kathy Tucker recommended I contact you.’

  ‘Okay,’ said the voice down the line. ‘Can I start with your name and family history, please?’

  ‘Sure. My name is Krystal Barter and I’m BRCA1 mutation positive.’ It felt like a line from an Alcoholics Anonymous meeting, but I pressed on and explained the history of hereditary breast cancer in my family. In particular, I pointed out that my great-grandmother, my grandmother and my mother have all had breast cancer. ‘Now I’ve just tested positive to the family gene fault, which is why I’d like to register for advanced screening, please. I don’t plan on getting breast cancer any time soon!’ I tried to make light of my dark family tree but there was no need; the woman at the cancer clinic h
ad obviously heard it all before because she didn’t miss a beat.

  ‘Well, you’re taking a great first step towards avoiding cancer, Krystal,’ she said encouragingly. ‘If I can just get a few more details from you, then we’ll get you onto the register straightaway. How old did you say you were, Krystal?’

  ‘Oh, I didn’t,’ I replied. ‘I’m 22.’

  There was a momentary silence from the other end of the phone line.

  ‘Twenty-two? Krystal, I’m afraid it’s a little early to be adding you to the register. Our statistics show that the incidence of breast cancer doesn’t spike until women are well into their 30s. If you’d like to phone back then, we’ll be more than happy to add your name to the register.’

  Now it was my turn to pause. My 30s?

  ‘But my test results show that I’m likely to have cancer by the time I’m 30!’ I blurted.

  ‘Well, that will show up with screening, if you do.’

  ‘But I want to do something before I get cancer. That’s the whole point!’

  ‘But you can’t detect cancer before it’s occurred,’ was the calm reply. ‘That’s not how screening works.’

  ‘So you’re saying I have to wait to get cancer before you’ll help me?’

  ‘No, I’m saying we don’t start screening until you’re 30 because that’s the point at which most high-risk people begin to develop pre-cancerous changes in their breasts. Changes that can be detected by screening.’

  I felt like I had slipped down a rabbit hole into Wonderland for all the sense this conversation was making.

  ‘But I’ve already told you: my situation is different. Thirty could well be too late for me. I might have cancer by then!’

  ‘Well, if you do, then the screening will pick that up.’

  Argh! This really was Wonderland! And I was the white rabbit running around in circles shouting, ‘Too late! Too late! For a very important date!’

  I took a deep breath and tried again: ‘Look, I appreciate you have rules and procedures around these things. But I’ve just learned I may have cancer by the time I’m 30—I’m more than likely to—and I can’t sit around and do nothing about it. I just can’t. Is there any way you can make an exception and add me to the register even though I’m only 22? I may not be here for you to add me in eight years time.’

  And that’s how I was added to the family cancer clinic register. I started my screening program several weeks later and this involved a routine of six-monthly ultrasounds and annual mammograms. (This was in addition to my own self-examinations at home, which I was undertaking with grim determination). There was also the option of MRI (magnetic resonance imaging) technology, which is often used in conjunction with mammograms as MRIs are able to pick up even the most minute abnormality in very dense breasts. MRIs are particularly useful for younger breasts (like my 22-year-old boobs) where the tissue can be far denser. At the time, however, MRIs were the only option on the high-risk register that weren’t free. And, at a cost of around $600 a pop, they were well beyond what Chris and I could afford, even from our lap of luxury that was the front room of Mum and Dad’s house. (There now exists a high-risk rebate for MRIs but this wasn’t even mooted at the time.)

  So I stuck to my ultrasounds and mammograms, undertaken at the formidable red-brick Royal North Shore Hospital at St Leonards. The ultrasounds use the same technology as pregnancy ultrasounds, although the equipment is specific to breast tissue, and the images are generally considered complementary to mammogram results. They were quick, pain-free and hardly an ordeal, considering that they could save my life.

  The mammograms, on the other hand, were less fun. Although I only had to have a mammogram once a year, anyone who has ever had one will tell you there are more enjoyable ways to spend your time than with your boob squashed between two metal plates. Even though the women at Royal North Shore Hospital were always as gentle as possible, and even though I knew mammograms were one of the best screening tools available for breast cancer (along with self-examination), I always dreaded seeing the friendly reminder letter with my name on it. Worse, though, than the brief discomfort, was the dread that going for a mammogram brought on. Would this be the test that showed a tumour was growing? Would this be when I learned I had cancer?

  Each time I made the trip to Royal North Shore it was with a heavy heart. That the journey to the hospital was so similar to the way that we used to drive to Nanny Beryl’s in Frenchs Forest when I was a kid seemed like an especially cruel joke. We even drove past the turnoff for Frenchs Forest, in fact. It seemed impossible to me that these two buildings—the hospital and my beloved Nanny Beryl’s house—could exist in the same universe, let alone be separated by just a few road arteries and less than twenty minutes of driving. But they were. And I was making a very different journey now to the ones I used to make to Nanny’s.

  CHAPTER 10

  As my world morphed into a dizzying merry-go-round of monitoring and mammograms and medical jargon, I had another, much more welcome ‘M word’ to distract me: marriage. Chris and I had set our wedding date for 10 March 2007 and this was now less than six months away. We’d chosen St Andrew’s Presbyterian Church in Manly for our fairytale wedding, followed by a reception at the International Tourism College in Manly (where Nicole Kidman famously married Keith Urban just a year before). Ours was to be a beautifully classic affair (think: a 14-member bridal party and a four-tiered wedding cake) but with one major exception: the colour. Billy Idol had it all wrong because, as far as I was concerned, it was a nice day for a pink wedding.

  I can’t quite remember when I decided to forgo a white wedding in favour of a pink one, but once I’d had the idea it seemed impossible that I’d ever choose anything else. After all, not only is pink my favourite colour but it’s the colour of my family. Whenever I think of my family’s tainted history, I see this colour which has become associated with breast cancer: pink. And later, when I set up my charity, Pink Hope, it would come to symbolise my family’s future, too. (Plus, I’d never been a white kinda girl; I have fair skin, so wearing anything too pale drowns me out. And a fake tan just wasn’t me.)

  I wanted to wear pink at my wedding to honour all those wonderful women in my family who had fought long and hard against breast cancer. And I wanted to wear pink in honour of Chris. Chris, who was agreeing to marry me even though he knew I was BRCA1 mutation positive; Chris, who was standing by my side despite the fact I was probably going to get cancer one day or, at the very least, lose my breasts; Chris, who was unflinching and unfailing in his love for me. By walking down the aisle wearing pink, I wanted to show Chris that I was bringing with me my family’s medical history, as well as my (and potentially our children’s) genetically flawed future. But, most importantly, I wanted to show the world that, in agreeing to marry me, Chris was taking on a helluva lot and that I couldn’t have loved him more because of it.

  I decided not to tell Chris of my plans for a pink wedding; instead I wanted to surprise him by walking down the aisle decked out in my favourite shade. So began my hunt for the perfect pink wedding dress. As you can imagine, there isn’t a huge demand for wedding dresses in any colour much beyond the spectrum of whitest-white through to ivory, and Mum and I soon realised that I’d need a bespoke gown. We trawled bridal boutiques and specialist websites in the hope of finding a design we could turn pink, but all to no avail. Nothing seemed quite right. And we soon got bored of explaining to snooty bridal store assistants why we wanted pink in the first place.

  Of course, my gown dilemmas were nothing when compared to my mum’s journey down the aisle. During our mornings scouring the Northern Beaches’ bridal stores, and our evenings at home pouring over Real Weddings magazine, Mum gradually told me the story of her own wedding preparation. And it wasn’t pretty.

  Mum had left her family home in New Zealand and was living in Melbourne when she met my dad and got engaged. She was young (just twenty years old), giddy with the freedom of big-smoke Melbourne after small-to
wn Matamata and madly in love. And so on the day she bought her wedding dress, Mum phoned home in a rush of excitement to tell her parents all about it. Only she didn’t bank on them having news of their own. Her dad answered the phone and, after letting her gush about the wedding gown that lay pristine in its glossy white box on the bed beside the phone, he said he had something ‘sad’ to tell her: ‘Julie, your mother has just had her breast removed.’

  Mum was devastated. And floored! She had no idea that Nan was even sick, let alone undergoing a mastectomy. Was it cancer? How serious was it? How long had they known? Why on earth hadn’t they told her about it? Mum struggled to focus as Grandad told her that Nan was in intensive care because she was having breathing difficulties after the operation. Mum’s wedding dress lay gaudily on the bed. ‘Where did this come from?’ Mum managed to say eventually. ‘I didn’t know there was anything wrong with her! Why didn’t you tell me there was something wrong with her?’

  ‘Do you think you could come over?’ was all Grandad said. And Mum was on the next plane home.

  It turned out that, when Mum and Dad had flown to New Zealand for their engagement party only weeks earlier, Nan already knew she had a 50-cent-sized lump in her breast. But she’d kept the knowledge from them because she didn’t want to ruin their holiday. When Mum returned to Matamata this time (with her wedding dress in tow), she found Nan in a hospice. She’s dying, was Mum’s first thought. Nan, however, had other ideas. No matter how sick the chemotherapy was making her (and it was making her mighty sick), Nan’s only concern was for the other patients in the hospice. ‘See that gentlemen over there, Julie-Ann?’ she’d say to Mum. ‘He’s really ill. It’s so terribly sad.’ And so while Mum had been back in Melbourne, blissfully worrying about her wedding dress, Nan had been worrying about everyone else in the hospice. Was nobody thinking about Nan!