The Lucky One

by Krystal Barter

‘Your mammogram just now has shown up linear lines of calcification. The calcification is inconclusive but it looks like the preliminary stages of breast cancer.’ Then she added sadly, ‘In fact, it looks just like yours did Julie.’

  She paused for a moment here while this news sunk in. With it, every single cell in my body felt like it slumped to the floor. Beside me, Mum was white.

  ‘Krystal? Do you understand what I’ve just said?’ the doctor asked gently. I nodded self-consciously. I felt like I was standing outside of my body, like I was watching myself in a movie. This wasn’t happening to me.

  ‘You should remember that one single mammogram is hardly conclusive.’

  I nodded again.

  ‘But with your family history, well, we have reason to be concerned.’

  I opened my mouth to speak but nothing came out. Just air and terror.

  ‘So what I’d like to do,’ she went on, ‘is to get you upstairs now for a biopsy to confirm these results. Then we can decide the best course of action from there.’

  A biopsy? Stick a needle in me right now? Poke and prod and turn me into a pincushion like my mum and my nan? And for what? To double-check I had breast cancer when all the signs were screaming at that conclusion? Did I need a biopsy to detect the big red neon sign flashing above my head that read: CANCER, PLEASE STOP HERE! No, thank you, I did not.

  ‘No; no biopsy, thanks.’ At last my speech had returned to me. ‘I won’t be needing a biopsy, thanks. But I am prepared to do whatever else you recommend.’

  ‘Alright,’ she swallowed hard. ‘Then I’d like to bring your mastectomy forward, Krystal.’

  ‘Done,’ I said. ‘How soon do you want it?’

  ‘Next week. You need to have your breasts removed next week.’

  When we left the doctor’s surgery that afternoon I was a mess. Tears streamed down my cheeks and I sobbed and hiccupped loudly. My doctor didn’t want me to leave while I was so visibly upset but I assured her I’d be fine; we really needed to get moving to pick up my boys. Back in the waiting room the receptionist took one look at me and Mum and wordlessly reached over and handed us a box of tissues. This only set me off worse than before and I howled even louder at this small kindness.

  ‘Thank you,’ I snivelled, as I tried to pass the box back across the desk to her.

  ‘You keep them.’ She smiled and then waved the tissues away, even though she looked in danger of needing them herself.

  So we took the tissues and started walking back to my car, in what was perhaps the worst part of my afternoon. And on an afternoon when you’re told it looks like you have cancer, that’s pretty bloody bad. In order to get to where my car was parked in Royal North Shore’s multistorey parking lot, we had no choice but to walk through Ward 12B: the oncology ward.

  Now, an oncology ward is not a fun place at the best of times but having just learned you could soon be a patient, it’s the worst place on earth. Stumbling down the corridor with Mum, my tissue box tucked comically under my arm, I tried not to see the various states of illness all around me. Sick, sicker, dying. Everyone in oncology was suffering some form of cancer and undergoing some form of cancer treatment and—even if they were in remission right now—it seemed impossible to me that this heinous disease wouldn’t get them in the end. Somehow, somewhere, even if it was in a secondary form or in a completely unrelated site on your body; even if it was years after your first diagnosis, I thought bitterly, once cancer came into your life, it never, ever left. Not until you did.

  This thought made me cry even harder. And for the first time in my life—in the middle of Royal North Shore oncology ward of all places, where I was surrounded by people who were suffering much more than I was at that point—I let self-pity take over and I wallowed in my wretched misfortune. Why do I have to get cancer? I sobbed. Why weren’t my family, with my beautiful husband and my gorgeous little boys, going to be spared? I’d always managed to keep it together whenever I was surrounded by my friends (with their bright, shiny futures lying ahead of them) or in front of my young family; but here in the oncology ward, amid all this cancer-related suffering, it was as if I didn’t have to pretend anymore. Like I could finally let my guard down and cry for myself. And so I bawled.

  The hardest part was I had always believed I was beating this thing. Like I was one canny step ahead of cancer. I thought I could duck and dive and dodge my way out of a breast cancer diagnosis if only I could get enough genetic information and take enough screening tests and be proactive enough and vigilant enough and all those other things I was supposed to do. But now it was as if all that control had been taken away from me.

  In many ways I’d already been battling cancer for years, even though I’d never faced diagnosis. Now, it looked like my fight might begin for real. And it was only as I walked through the oncology ward that day that the unfairness of it all finally hit me. But I’m only 25, I kept thinking. I’m only 25 …

  CHAPTER 15

  The week that pre-cancerous changes were detected in my breast tissue was the defining week of my life. After months of acute anxiety, and years of deep-seated fear, I was finally faced with the very thing I had dreaded all along: cancer.

  Still, I felt ambushed.

  Where I thought I had a good five to ten years before my cancer gene kicked in, suddenly my breasts were changing now (and more than a decade earlier than my mum’s had). And where I thought I had five months to prepare for surgery, suddenly I was looking at just over one week. Which is not a lot of time to say goodbye to your breasts forever.

  It was an incredibly poignant time, and one I get goose-bumps just writing about. It was so emotional; a gut-wrenching, heartbreaking, soul-searching time, when my whole world felt like it had been stripped raw and I clung to those closest to me for dear life. It was a time of dwelling and of hoping and of praying and of wishing.

  But mostly it was plain old frenetic. I didn’t catch my breath.

  As soon as I got home from my appointment with the doctor, I went into overdrive. I told my family and my closest friends, who rallied around me with amazing support. I phoned Lindsay in Chicago and spent many, many hours talking with her. I began to make arrangements to have Riley and Jye looked after while I was away and then, with dread, I pulled out the bag I usually reserve for holidays and started to plan what to pack for hospital.

  Then, in the hope that I might be able to prevent other women from suffering alone like me, I decided to take my story public. I reasoned that if opening up my life for observation encouraged just one woman to go out and have a mammogram or just one high-risk person to see their doctor and ask a few pertinent questions about preventative mastectomies, then my experience wouldn’t be in vain. So on the day after I learned of the calcification in my breast, I phoned up 60 Minutes and invited them along to follow my surgery.

  I had been in ongoing discussions with 60 Minutes about appearing on the program for a while now. Producer Kirsty was still interested in covering my (now-forgotten) journey through IVF and PGD and we had been in semi-regular contact about the story. Now, though, I phoned her up and suggested she send a camera crew along to film my experiences of surgery and (I nearly choked getting the words out here) to capture the moment when surgeons told me whether I had cancer or not.

  Kirsty immediately agreed. A crew was organised to follow me and my family, starting in two days time, in order to capture our back-story before I was admitted to hospital. They would also follow the story of Stacey Gadd, a fellow BRCA1 mutation-carrier from the Adelaide Hills in South Australia. Although I didn’t know it at the time, Stacey’s breast surgery was scheduled for the same month as mine (we’ve met since then but I wish I’d known her in the lead-up to our mastectomies when we both could have used the shoulder to cry on). Importantly, neither of us got paid by the Nine Network. Neither of us was telling our story for profit; just in the hope it might help viewers in some way. Kinda like Angelina Jolie telling all to the New York Times when she underwent a pre
ventative mastectomy. (In fact, we can’t be sure Stace and I didn’t give her the idea in the first place …)

  But, in all seriousness, I was worried what sort of story we might be giving Channel Nine’s viewers. Because that week prior to surgery was a hell of a week.

  For starters, I had to undergo a process of lymph node mapping. This involved yet another visit to Royal North Shore Hospital, this time so doctors could inject royal blue ink into both my breasts in order to find my sentinel lymph node. From this small node, about the size and the shape of a baked bean, doctors would decide whether it was necessary to undertake a full auxiliary lymph node dissection during my mastectomy, or if the nodes were negative and could safely stay. Having your lymph nodes removed is not something to be entered into lightly, as this can cause pain, swelling paresthesias (abnormal sensations) or even permanent numbness in the arm and armpit region. Mapping the lymph nodes, however, is generally a quick ’n’ dirty procedure that takes less than an hour in total.

  Except in my case, when my mapping experience was complicated by the fact the doctors hit a nerve. This is ridiculously easy to do, as the lymph nodes near your armpits are a mass of nerves and ganglions, but it’s also ridiculously painful. My body involuntarily contracted the instant the needle hit the nerve and I writhed in agony, tears popping out of my eyes.

  ‘I’m so sorry!’ exclaimed the doctor. ‘We have no way of knowing where the nerves are placed so sometimes we hit one.’

  I tried furiously to blink away my tears and to assure him it wasn’t his fault but the pain was so intense it took everything I had just to get through it. And then gradually, eventually, the pain began to subside and the room came back into focus and I could begin to breathe again.

  Far worse than any physical pain, however, was the pain I felt for my nan. Nan flew over from New Zealand to be with us and, while I was infinitely glad to have her around, a small part of me wished she didn’t have to witness this. If only for her sake. Having watched her mother and her only daughter go through this process (not to mention her own bilateral surgery), Nan found it nearly impossible to accept that her only granddaughter was having a mastectomy, too. She’d always hoped things might be different for me and I felt very sad for my nan that week.

  Of course, among the tears and the medical tests and the planning and the packing, we had a film crew in our midst to distract us. Each morning an iconic blue-and-white Channel Nine minivan would roll into our driveway like the circus rolling into town, and from there the bedlam would begin.

  ‘Is there any way we can fit a six-foot boom in here?’ (Cameraman #1, peering optimistically into our living room with its five-foot ceilings.)

  ‘How does it feel to put yourself through this surgery knowing that, without it, you might never get cancer anyway?’ I was being asked.

  ‘Can we get a shot of your naked breasts pre-surgery?’ (Cameraman #1)

  ‘Just act natural.’ (Cameraman #2)

  ‘Act natural? Topless? On national TV?’ (Me, hiding behind a bath towel.)

  But somehow my how-did-I-get-myself-into-this moment didn’t come until Kirsty, as producer, suggested we get some footage of me walking along Manly beachfront. In a bikini.

  ‘A bikini?’ I repeated, as if she had suggested a spacesuit, or perhaps a cowboy costume, for my sojourn down the Manly promenade.

  ‘Yeah!’ she enthused. ‘It’ll make for great TV. Young Aussie mum, strolling along one of our most iconic beachfronts, looking like she doesn’t have a care in the world when really she has the weight of her entire family’s genetic history on her, um, chest. Plus, you’ll look hot.’

  I laughed, long and hard.

  ‘Sorry, Kirsty, but there’s just no way. My boobs are one thing. But I just can’t see how exposing my thighs on prime-time television is going to help anyone in their battle against hereditary breast cancer.’ And so the idea was abandoned.

  Instead, they took some shots of me and Mum and Nan walking along the waterfront at Clontarf (about ten minutes drive from our house in North Manly), and then of me and Chris and the boys in the playground there. Chris was nervous about the filming. He’s an incredibly private person and felt totally unnatural in front of a camera and so it was a big concession for him to do this for me. And yet he didn’t think twice about it. If sharing my story on 60 Minutes was what I needed to do, then Chris would support me in that. Just like he had supported me for each step of my BRCA journey so far, and just like he was supporting me now as I headed to hospital to have my breasts removed and to begin my showdown with cancer.

  CHAPTER 16

  My mum often recalls the moment she learned she didn’t have ovarian cancer. Her surgeon arrived to discuss the results of her ovarian operation, and to personally confirm it wasn’t cancer, just as the mid-morning news was starting on TV. (This was right about the time our family was running up and down the hospital corridors, shouting in ecstasy, like crazy people.) At that very instant, when my 46-year-old mum looked up at her surgeon and was officially given the all-clear, the television on the wall behind him quietly announced that Australian actress, Belinda Emmett, had just lost her tragic battle with breast cancer. Belinda Emmett was just 32 years old.

  And that’s the thing about cancer: it’s so damn unfair.

  I felt this acutely in the hours leading up to my surgery. As I lay waiting to go under the knife, I was scared about the pain and I was petrified of a bad diagnosis, but mostly what I felt was rage: rage at the injustice of it all. At the thought of all the other beautiful young women out there fighting for their lives.

  Just beyond my hospital room I could hear 60 Minutes journalist, Ellen Fanning, out in the corridor recording what was to be the opening salvo of her report. (As it turns out, this was eventually filmed in-studio. The initial recording out in the corridor must have been discarded, probably for sound reasons.)

  ‘It’s a family curse,’ she declared in television-perfect pitch. ‘Handed down from generation to generation and there’s only one radical way to stop it.’

  At this point, I glanced down at the plastic bracelet on my wrist announcing ‘KRYSTAL BARTER: BILATERAL MASTECTOMY’. This sure was pretty radical, Ellen, I agreed.

  Ellen went on: ‘The two young women you’re about to meet are just starting out in life but there’s a huge shadow hanging over them. Stacey Gadd’s only 22 and Krystal Barter is 25. They’ve watched their mothers and grandmothers fight breast cancer and they know they could be next. Both have inherited a genetic flaw which is likely, sooner or later, to cause cancer.’

  Now my mind flashed, involuntarily, back to the moment last week when Dr Moore told me they had detected changes in my breast tissue.

  ‘But Stacey and Krystal aren’t going to wait,’ Ellen was wrapping it up now. ‘Rather than wait for cancer to come and get them, both girls have decided to act now.’

  Have we? I wondered. Have we really decided to act?

  I couldn’t speak for Stacey who, at this stage, I’d never met, but what I was doing right now—lying here in my insipid blue hospital gown, willing the clock to stop, willing the orderlies not to come and get me, willing anything, anything to happen that might prevent me from having to go through with this—felt like the furthest possible thing from ‘acting now’. I felt like I had no choice but to be here and that there was nothing remotely proactive about my ‘proactive breast surgery’. I have cancer in my DNA, I thought bitterly, and my whole life has been marching, inexorably, to this point. We are cursed. My whole family is cursed. And there is nothing I or anyone else can do about it.

  I could hear the orderlies now, shuffling up the corridor past Ellen and her film crew, until they arrived in my doorway to take me to theatre. No amount of genetic information or proactive mammograms or screening or counselling or anything else could save me now. I tried everything I could and yet here I was, only 25 years old, and about to lose my breasts anyway.

  Truly, I was cursed.

  When I woke up fr
om surgery a hippopotamus was sitting on my chest (that one from Riley and Jye’s picture book). It flattened my chest and constricted my breathing, but at least by feeling that hippopotamus I knew I was still alive.

  ‘I want Chris!’ I blurted. ‘Where’s Chris? I want Chris!’ And I strained to try and sit up and see where he was. ‘Where’s my husband?’ I said again, more loudly this time.

  ‘Krystal, you’re in recovery,’ said a disembodied voice from somewhere nearby. It wasn’t a voice I recognised. ‘You’ve just woken up from your surgery and you’re doing fine. We’ll have you up to your room and back to your husband in no time.’

  I sank back onto the bed and tried to focus on my surroundings but the film of anaesthetic still veiled my eyes and this, combined with the glare of the overhead ceiling lights, made the world swim before me. I would see Chris soon. I was doing fine. My surgery was over. I tried to process each of these thoughts in turn but they kept skidding into one another inside my foggy brain. Giving up, I shut my eyes and let the recovery ward hum and clang and bustle along without me.

  The next time I woke up I was safely back in my hospital room with Chris and Mum keeping vigil. The hippopotamus was there, too. But somehow, under my warm woven blanket, and the watch of my family, the weight on my chest seemed to have lifted a little.

  ‘Welcome back, babe,’ Chris said and smiled.

  ‘You did it!’ Mum enthused.

  I tried to smile back but I felt like I was bandaged so tight around my chest that I might pop open if I attempted to move even the muscles on my face. Besides, a grimace was probably the best I could summon right now. I wasn’t in any pain—the anaesthetic hadn’t worn off enough for that—but I certainly wasn’t feeling jubilant, either. Aside from my mummified torso, I had four surgical drains attached to me (two inserted into either breast), collecting blood and lymphatic fluid. Each drain had a tube with a bulb at the end of it and the tubes were held in place with stitches. The whole effect was massively uncomfortable, as was the knowledge they could be there for days. I felt as if I might never move freely again.