The Lucky One

by Krystal Barter

  Still, all this was nothing compared to the dread that was gripping me. As, one by one, the thoughts swimming around in my pea-soup brain began to coalesce (my surgery was over; Chris was here), my one fear remained: Did I have cancer?

  ‘Has Dr Sywak been?’ I tried to turn and face Chris and Mum as I asked this so that I could gauge their expressions, but my body was having none of it. The Titanic would have swung around more easily than this.

  ‘No, not yet, sweetie.’ Mum patted my hand. ‘Remember, it might be a while before we know your results. The main thing for you right now, is to focus on getting better.’

  And so for four agonising days I waited to learn if I had cancer. For the first three days, the pain kicked in and the-site-formerly-known-as-my-breasts gave me hell. Initially, I was hooked up to Fentanyl (which is roughly one hundred times more potent than morphine) and the relief it brought was not just physical—it also let me exist in a permanently woozy state where the minutes melted into hours and the hours into days. Three days in fact. I have vague memories of Mum bathing me at this time and she tells me she did this every day (sometimes twice a day), in order to save me the ignominy of having the nursing staff do it. I also remember missing my boys terribly. Chris and I had decided before I came in for surgery that we didn’t want Riley or Jye to see me in hospital like this, with drains and drips and beeping machines. It would be too distressing for them. Instead my family had made a wall of photos of the two of them beside my bed that was intended to inspire me (but, in reality, only made me more homesick for them both). More than anything, though, I remember Mum coming in each morning—she was always my first visitor—and throwing open my curtains and declaring: ‘Every day is a new day, Krystal, and it will get better. I promise.’

  I only hoped she was right.

  When Dr Sywak finally arrived with my test results, the 60 Minutes crew were back onboard. Having given our family some time to recoup after my surgery (and me some time to look slightly less heinous post-op), Ellen and her film crew were now perched around my tiny hospital room, balancing preciously among drips and heart-rate monitors and bunches of flowers, waiting to learn if I had cancer. The mood was tense and falsely upbeat.

  And Dr Sywak was uncharacteristically inarticulate as he delivered my results that day. ‘Um,’ he stumbled as he started, and the hippo returned then, plonking himself down on my chest and causing me to suck in air fast.

  ‘Your pathology results arrived this morning …’ he continued and I strained to hear him over the blood pounding in my ears. This was it. This was the moment I had feared my whole life.

  ‘The results were very good. As we suspected, there was evidence of atypical ductal hyperplasia there …’

  I held my breath.

  ‘This is an abnormal pattern of cell growth in the breast tissue …’

  I couldn’t breathe.

  ‘But there was no evidence of any cancer at all.’

  I didn’t blink. I couldn’t move. Did he just say, no cancer?

  Around me, the room erupted into cheering.

  ‘So, doctor, does this mean that Krystal will never have anyone say to her in her life: “You have breast cancer?” ’ Ellen got straight to the point but I was too numb to even register the question. I couldn’t have told you my own name just then if you’d asked me.

  Dr Sywak smiled. ‘You’ve probably spent enough time with doctors to know they will never give you a 100 per cent guarantee but the chances of her developing breast cancer in future are less than 1 per cent.’

  When the 60 Minutes episode went to air, the footage of this moment cut to a montage of our reactions to the news: Chris hugging me; Mum crying quietly on the couch beside my bed; Ellen laughing happily with her crew. And throughout it all I am propped up in bed in my pale-pink peasant top, looking dazed and smiling vaguely.

  Ellen’s voiceover narrated the scene for the viewers at home: ‘Krystal will almost certainly be the first woman in four generations to avoid the family curse. News that is almost too good to believe.’

  What Ellen said in real life, though, was: ‘He just told you, you have virtually no chance of getting breast cancer!’ She was grinning at me in such genuine excitement that it was as if she’d just been told she didn’t have cancer. My own response must have been something of a letdown.

  ‘It’s good,’ I said. ‘It’s good. It’s great!’ It was like confetti swirling around me that I couldn’t lay a finger on.

  ‘My mum had to sit there when she was 36 years old and be told that she had breast cancer and I’m 25 and I’ve beaten it,’ I said slowly for the camera, and I was trying to make sense of it all as I said it. I was the first woman in my family to beat breast cancer.

  I turned back to Dr Sywak and I felt a rush of gratitude. I had a lot to thank him and his surgical team for. ‘This is the best feeling,’ I grinned at him eventually. ‘The best feeling.’

  At last I felt lucky.

  When you stop and think about it, you realise my cancer scare was a blessing.

  If doctors hadn’t detected pre-cancerous changes in my breast that November then I would certainly have postponed my breast-removal surgery at least once. I’m sure of it. I was that scared of going through with it. (Or, imagine if I’d gone down the path of trying for a genetically perfect baby? I could have been nursing a newborn and advanced cancer right now …) The truth was, I had been so frightened and so unprepared to remove my breasts that there’s no way I would have had the scheduled surgery in March if the decision had been left up to me. I needed a push and it just so happens that push was cancer. So it was a blessing in a way, this early-stage cancer detection. Without it my story might have had a much worse ending. In fact, I may not have been here to tell it at all.

  Instead, my life post-surgery was something of a new beginning.

  I always tell people that, the instant I discovered I had beaten breast cancer, I felt like an enormous weight was lifted off me—a weight that I’d been carrying around since I was a kid. And, hell, it wasn’t like it was the physical burden of my breasts I was missing. Because those 12Bs were never heavy to begin with! They were pretty average, in fact, or at least they were after having breastfed two boys. But once my breasts were removed I was astonished at just how much they’d weighed me down. Post-mastectomy and cancer-free, I felt like I’d got a load off my chest—literally. Moreover, I felt like I could finally plan my future. I could think about travelling and about having another baby. I could plan a career, for the very first time in my life. I could dream of growing old and of watching my boys grow up and of seeing them get married and even, one day, of holding grandbabies of my own!

  Before surgery, cancer loomed large over my life. I had lived in the shadow of breast cancer since my mum was first diagnosed back when I was fourteen. Longer, if you count my family history. But if cancer was my dark cloud (and bigger, better breasts the silver lining), then being cancer-free was like stepping into glorious light.

  Finally, my life had colour.

  CHAPTER 17

  Naturally, that colour was pink. When I emerged from hospital and out into the world of saturated technicolour, I felt like my beloved Judy Garland entering the wizard’s world of Oz. Everything glittered. On my slow, frail walk through the car park I spotted a patch of windswept dandelion flowers growing through the cracks in the bitumen and the sight of those pathetic weeds straining to reach the sunshine gave me a disproportionate amount of hope. Life, it seems, will battle against anything.

  Years ago my mum and her friends set up a cancer-support group for women on the Northern Beaches called ‘Active Women Touched by Cancer’. It’s nothing formal, just a bunch of ordinary women, all waging their own war against cancer (or bearing the scars from earlier battles), who do whatever they can to make the load easier for each other. They do each other’s washing and make cups of tea and ferry one another to medical appointments and proffer boxes of tissues and a shoulder to cry on as needed. Mum, in particular, s
eemed to be called on most often whenever one of these women was in the final stages of terminal cancer and wanted someone physically by their side as they lay dying. Over the years I’ve drawn so much inspiration from watching Mum and the others in Active Women support one another. But one story in particular will always stay with me.

  I’ll never forget Mum telling me about the stunning blonde woman in their group, Christina, who fought a long, valiant but ultimately unsuccessful battle against breast cancer. Christina was the stepmother of world surfing champion Layne Beachley, and was a glamorous woman who was always beautifully put together. Christina’s last wish, in the final hours of her life, was to have Mum paint her toenails with fiery red nail polish. This final touch of glamour was her one last indulgence and her one last act of defiance. Christina never stopped fighting till the very end.

  And so now, as I left hospital bruised and battered and bent-over with pain, I thought about Christina—an actual cancer sufferer—and was inspired to fight on.

  But before I was discharged I’d had something of an epiphany on the idea of starting a local version of Lindsay’s cancer charity, Bright Pink. Well, not so much an epiphany as the dull realisation: If I don’t do something, who on earth will? Both Lindsay Avner and Stacey Gadd (my new mastectomy buddy from 60 Minutes) were instrumental at this point.

  Stacey urged me to try and set up a Bright Pink equivalent here, saying, ‘Everyone like us needs a home to go to, a place to feel safe.’

  Lindsay was more succinct: ‘Just do it,’ she instructed. ‘How do you think Bright Pink got started?’

  And so, four days after I’d had my breasts removed—while I was still whacked out on painkillers and I was unable to raise my arms higher than my belly button without assistance—I had the nurses take out my laptop for me and prop it up against my knees while I lay in my hospital bed. And there, surrounded by drips and drains and drugs and doctors, I launched ‘Pink Hope’.

  At first, Pink Hope was an incredibly modest website. I looked up that guy from the Breast Cancer Foundation breakfast at Dee Why all those months ago and, to my surprise, he remembered who I was and was willing to get onboard and provide pro bono tech support for us. He did an amazing job (given he was working with a budget of nothing) and within weeks of my leaving hospital, Pink Hope was a fully functioning online community where women at high-risk of breast and ovarian cancer could find support and encouragement and information and, most importantly, other women just like themselves to chat to. I was stoked.

  Of course, for the first two years of its existence, Pink Hope didn’t make a cent. I learnt an awful lot about the charity sector during this time and about the in’s and out’s of securing philanthropic donations. I learnt about intellectual property law and about garnering and crediting reputable medical information to post on our website. And I learnt more than any girl with barely a passing interest in technology should ever have to know about ‘back-end’ website procedures. But I loved every minute of it.

  After years of being at the mercy of cancer, finally I felt like I was in control. I’d played the victim for a very long time as a teenager; back then I barely knew how to do anything else. But as I pieced myself back together again in the wake of my mastectomy, when my life was arguably the lowest it had ever been, I found strength in getting on with the business of doing something for others. Don’t get me wrong, I’m not a big fan of self-righteous posturing and that’s not where this is headed. In fact, in the years since I founded Pink Hope, the charity has given me so much more than I ever expected. I’ve made some amazing friends, met some inspiring families and learned from some really incredible medical professionals. But at the time I set it up, Pink Hope gave me just one thing, and the very thing I needed most: it gave me hope.

  Now, I was a woman on a mission to share that hope with others.

  That’s not to say my life was rosy from the instant Pink Hope was born.

  In the weeks following my surgery, I was mightily sore and sorry. To begin with, I was bandaged impossibly tight, from my stomach to my décolletage, and those bandages remained in place for seven days after I left hospital. Then came the dressings which had to be cleaned and replaced daily. Plus, I had drains attached on either side of me for ten days following my surgery and then, after they’d been removed, I developed a nasty seroma (or fluid build-up) that had to be drained manually by my doctor. I couldn’t hold my babies, couldn’t even cuddle them, which was the most awful part for me, and Jye was so frightened of how I looked now that he wouldn’t come near his ‘Mama’ for the first week after I left hospital.

  Chris, as ever, was a saint during this time. He was patient and sympathetic, and he did an amazing job of being both mum and dad for our boys. He took time off work to ferry me to and from my medical appointments and, perhaps most important of all, he told me I looked beautiful when the mirror was saying otherwise.

  And if Chris was a saint, then Lindsay was divine intervention. Post-surgery, we were in touch often with Lindsay sending me all kinds of inspirational quotes and stories and filling my inbox with new and special pep-talks to help get me up and out of bed and somehow able to face the day. In particular, I was struggling with the fact that I was 50 per cent likely to pass my gene fault on to my boys. It was a flip of a coin, those odds, a simple ‘yes or no’ answer. And to think that I was the reason Riley and Jye faced such a half-and-half chance … It was enough to make me physically hurt at the thought.

  I still had baths with my boys after my surgery (they were four years old and eleven months old), but every time Jye saw my bruised and swollen breasts with their train tracks of stitches down each side he gave that sharp intake of breath that kids make whenever they know something is sore or hot.

  ‘Ooh-ooh,’ he would utter breathily, waggling his fat fingers and wincing in sympathy.

  ‘It’s okay,’ Riley would instruct him. ‘Mummy’s had an operation on her boobies so they don’t make her sick.’

  This was the line Chris and I had taught Riley and, although he could parrot it, we couldn’t be sure just how much it actually meant to him. I mean, I sure as hell still struggled to make sense of the whole hereditary cancer thing, and most adults couldn’t comprehend the idea of a preventative mastectomy; so how could we honestly expect a child to? Still, kids are amazingly resilient and we felt we had to tell Riley something to reassure him that his mummy was safe.

  While we tried to prevent the boys from worrying about me, I was still tormented with fear for them. What would I do if I found out they were carriers of the gene mutation? Would they avoid all the BRCA-associated cancers for men (such as male breast cancer, pancreatic cancer, and prostate cancer)? I hoped beyond all hope that they would dodge the BRCA bullet and live long and cancer-free lives.

  Their fifty/fifty odds weighed heavily on me until Lindsay sent me this simple quote from author Mary Anne Radmacher: Courage doesn’t always roar, courage is sometimes the little voice at the end of the day that says, ‘I will try again tomorrow’. Seems pretty innocuous, right? Wrong.

  When I opened up the email from Lindsay that contained this one single sentence, I suddenly realised how I could help my boys: I could be brave for them. If I wanted Riley and Jye to live bold, courageous lives, despite the threat of cancer, then I had to show them how. And not in a big, loud, ta-da-here-it-is! kinda way. But just quietly and consistently, day-in and day-out; I needed to be doggedly determined not to let this thing beat us so that they would do the same. I couldn’t get depressed, couldn’t be defeated, couldn’t live in fear—I had to think and plan and act and embrace life in a way that says: ‘You know what, Cancer? I won’t play by your rules. I’ve got too much living to do.’ Then, hopefully, my boys would do the same.

  And this idea all stemmed from one short email from Lindsay. Honestly, I don’t know what I would have done without her.

  Closer to home, my three best friends couldn’t have been more split in their reactions to my surgery. My lovely friend,
Erin, who I’d known since school days, had cried at the foot of my bed every day I was in hospital. She would stand there, struggling to hold her composure, repeating the words ‘You are just so brave’ as if it were some kind of yogic mantra. Erin bought me a book and flowers and called me during the times she was unable to visit. She really was very sweet about the whole thing. So was Jaime, who I have been best friends with since we were seventeen. Although, unlike Erin, Jaime could hardly bear to look at me when she visited me in hospital (she said it made her feel a little faint), but she was so heartbroken over the whole situation and so desperate to support me that she forced herself to keep coming back every day to see me.

  Then, there was Bec. Bec is two years older than me and has always been a—generally much-needed—second mum to me. (This is the same Bec who phoned my actual mum about my drug-taking back when I was a teenager.) Bec always looked out for me, always supported me and always had my back no matter what I did. When it came to my breasts, though, Bec was angry.

  ‘I don’t understand why you’re doing this. You don’t have cancer!’ she said to me, matter-of-factly, when I first told her I’d decided to have surgery. Bec couldn’t accept that a normal, healthy, rational person would cut off their breasts just in case they got cancer, and nothing I could say could convince her otherwise.

  ‘Just Google it,’ I’d argued. ‘Go home and Google “BRCA-mutation-positive-slash-now-what?” and then tell me you wouldn’t do exactly the same.’

  In the end, she did. And then she called me the next day to say she’d spent half the night on her computer and that she was sorry for not understanding and for not trusting my decision. She’d do the same, she realised. And so now, after my surgery, I had Bec’s support more than ever because she knew, if it were her, she would have made exactly the same choice.