The Lucky One

by Krystal Barter

  As for my mum, well, she was incredible. Mum bathed me and fed me and, when she wasn’t looking after me, then she was bathing and feeding my children, too. Moreover, she was upbeat and optimistic and cheery whenever I needed it most (which was every day at this point in time). It was like having my own personal cheerleader.

  So you can imagine my surprise when, years later, Mum told me that watching me go through my mastectomy was the worst thing that had ever happened in her life. For a woman who has endured so much—who’d had a mastectomy herself, and survived breast cancer, plus an ovarian cancer scare, and who’d nursed her mother through cancer before that—Mum doesn’t use the term ‘worst’ very lightly.

  Even now Mum finds it hard to talk about my surgery (and the recovery afterwards) without crying. For her, the saddest day came a week or so after my operation, when I was recuperating at home and a nurse arrived from the hospital to remove my bandages for the first time. Mum and Nan sat on one couch and the nurse sat facing them on the couch opposite, while I stood in the middle, my arms outstretched, as the nurse slowly unwound me. On and on and on it went, the bandages slithering to the floor like some sort of white crepe serpent shedding its skin. And beneath it all, I looked horrendous.

  My chest was speckled with yellowing bruises that stood out angrily from my ashen skin. My four drains were still attached, two on either side, only now I could see the train tracks of neat black stitches puncturing my skin where they were holding the drains in place. But worse than that: my chest was flat. During my mastectomy, when my own breast tissue was removed and the hard silicone expanders were inserted in its place, the expanders were filled with less than 100 millilitres of fluid. In the weeks and months to come, my plastic surgeon would begin a process of regular saline injections into the expanders, like slowly, painstakingly blowing up a balloon. Only it was too soon to start injections yet so, on the day the nurse removed my bandages, my chest looked like that of a 12-year-old boy.

  However, that horror was nothing compared to having my drains removed. Surgical drains, I had learned at some point during my BRCA journey, were affectionately known by those that needed them as ‘hand grenades’. I guess their bulb shape, plus the drainage tube coming out the top, makes them not unlike a hand grenade to look at. What struck me, though, was that a woman could joke about having handheld bombs attached to her bra, when her own breasts were ticking time bombs—cancer victims, I had fast discovered, often had a wonderfully black sense of humour. Time and time again I would meet super-inspiring women in surgical waiting rooms or familial cancer clinics who could somehow find the strength to laugh in the face of cancer.

  I, however, wasn’t at the laughing stage quite yet when it came to my own ‘hand grenades’. At about the time I was due to go back into hospital to have my drains taken out, the drains that were inserted into my left-hand side somehow got caught around one of my nerves. I don’t know if it was something I did—if I’d moved the wrong way and caused it to become entangled—but what I do know was that the pain was unbearable. Absolute agony. I felt like I was being stabbed in some raw wound in the side of my breast with a hot rusty knife. I could barely breathe for the pain it sent into my chest whenever I took in air. So, after several hours of watching me fight to draw breath, my parents and Chris gingerly packed me up and took me to the hospital, two days earlier than planned.

  Dad double-parked right outside the entrance and Mum and Chris were forced to take me inside in a wheelchair because I was well past walking by this stage. I must have looked like a wizened little old lady, all grey-faced and doubled-over in pain, as they wheeled me back into hospital that day. Even though it was only a few metres from the entrance bay to the foyer, I certainly couldn’t have walked. It seemed grossly unfair that I’d walked proudly out through this same archway a few weeks earlier, fresh from my operation and so determined to make a new start, and yet here I was heading back into hospital, and having to be wheeled this time because I was too sick to make it on my own.

  As all the pamphlets on breast removal surgery will tell you, surgical drains aren’t necessarily painful but ‘you will probably be aware of the discomfort they have caused you after you have had them removed’. Aware of discomfort? Oh, I was aware of discomfort, alright. My tangled nerve meant that the process of removing my drains was horrific. Chris was by my side at the time and he swears some gloopy part of my insides came out with the plastic tubing. But then the relief I felt the instant my drains were gone was quite simply incredible. I didn’t hurt! I could breathe freely again! They didn’t call these babies grenade-drains for nothing, I thought—it was as if all the pain in my breast had been annihilated!

  It was at this point that I felt like I could go on again; I could do this thing. I would get out of this hospital and I would piece my life back together; I would recover and grow strong and I would be able to lift my boys again and to hug them to my chest. Sure, this whole experience hadn’t been much fun. In fact, it was hands-down the hardest thing I’ve ever had to do in my entire life. But I had undergone a double mastectomy and I’d survived. What’s more, I was one of the lucky ones; I didn’t have cancer. And so the only way from here was up.

  Or so I thought, until I got my new breasts.

  ‘They’re saggy!’ I sobbed, cupping the teardrop-shaped globules of silicone that sat heavily in my palms. ‘Oh, my god, they’re so ugly.’

  I shouldn’t have been surprised. Although Megan had done an incredible job, my breasts were much smaller than I’d been expecting (which is why, I guess, it’s so common for people to have corrective surgery after they have breast reconstructions). More surgery, however, was the furthest thing from my mind right now. Over the last three months I had undergone a process of expander inflation, achieved through regular percutaneous injections. In short, every three weeks Chris would drive me to the surgery of Dr Megan Hassall, whereby she would come at me with a needle best suited to a racehorse and inject it into my breast. From here, Megan would inject saline solution into my breast expanders in order to pump them up. It was a hair-raising experience—not so much painful as stressful—as Megan was required to inject the saline solution into the hard, plastic expanders. This required force but Megan was always very gentle. On Mum’s good advice I popped half an Ativan before each session to calm my nerves. Still, the actual process of pumping up my pectoralis muscles (the main muscle under the breast) didn’t hurt too much, nor did the gradual stretching of my skin over the three-month period as my breasts were inflated. It just made me feel somewhat like a pincushion.

  On the upside, being able to choose my boobs was like being some sort of mammary Goldilocks at a silicone smorgasbord. C-cup? D-cup? This one is too small; that one is too hard; but this one? This one is just right! My options were mindboggling. There was, however, one option I didn’t have to ponder—and that was size. Because if I was going to go through the pain of a double mastectomy and then a breast reconstruction, there was no way I wasn’t coming out of it with amazing boobs. So I had Megan pump me up to a fulsome C-cup, and didn’t my cup of happiness overflow with it! I would walk down the street to meet Chris after each injection session, pumped up with saline and sporting a tight T-shirt, flaunting my babies for the world to admire. In fact, it wasn’t until I had my second and final surgery—when my saline-filled expanders were removed and my permanent implants were inserted in their place—that things went wrong.

  This final surgery was much less complicated than the original mastectomy as the procedure mostly takes place through the existing scars. Consequently, my expanders were whipped out and my silicone implants put in and I was home and recuperating before I even knew it. I arrived home with permission from Megan to take off my own bandages after a 48-hour period. What I uncovered when I did was devastating. My new breasts were much flatter and more natural-looking than I had hoped for and, despite having elected to go up a size to a 12C, they were now no bigger than the real 12Bs that I’d been through so much heartach
e to have removed. It wasn’t that anything had gone wrong with the implant surgery; just that once the round expanders were removed my breasts appeared much smaller than the 12Cs I’d been parading around. It was only the expanders that made me look like I’d gone up a size. Apparently this is a common complaint and revisional procedures (either to fix breast appearance or to re-match breasts where only one breast has been remade) are relatively frequent in the world of reconstruction. My new boobs were teardrop-shaped, as planned, but rather than making them look more natural somehow this only seemed to make them appear saggy after the ‘round’ look of the expanders that I’d grown used to. They looked like they were someone else’s boobs stuffed into my body. I cried for two days when I saw them.

  ‘I hate them …’ I sobbed quietly in the bath, my hair piled up on top of my head and my body sunk low to try to submerge my breasts under the foam so I didn’t have to look at them. ‘This is so unfair!’

  Mum and Chris sat patiently on the cold tiles next to the bath; Chris tried to calm me down, while Mum cried quietly at having to see me so upset.

  ‘They’re so ugly,’ I cried. ‘I hate them!’

  ‘They’re not ugly, babe. You look beautiful,’ Chris said.

  ‘Megan is amazing. We can always go back and she’ll give you the breasts that you want,’ Mum encouraged.

  But I wasn’t having a bar of this. ‘No; no way. I’ve had so much surgery, there’s no way I’m going back again.’

  And there wasn’t. After a double mastectomy and a breast reconstruction, after drains and expanders and injections and implants, there was no way I was going back for more. Eventually, I realised that I could live with boring B-cups if it meant living without cancer and returning to normalcy.

  CHAPTER 18

  Still, it was weird seeing my breasts without nipples. At first I found it hugely confronting, like I was some sort of life-sized Barbie Doll, all smooth plastic contours, fresh off a factory conveyor belt. I felt it acutely, those two small but very essential parts of me that were now missing; parts I never really appreciated until they were gone. I mourned my lost nipples whenever I stepped out of the shower and caught a glimpse of my android-curved chest in the mirror, or when I slipped into seductive lingerie for my husband and couldn’t feel the lacy mesh prickling against my nipples. It was strange. Of course, having no nipples has its perks, too. T-shirt bras are a thing of the past and I never have to worry about seedy old men ogling my chest when I’m cold. And I’ve reached a point now where I can be critical of my nipples in a way I never could when I was (literally) more attached to them. They were too big, for a start. But, still, it took me a long time to arrive at this point where I could find any positives to not having them around (despite the fact I had elected not to replace them). For the first few months, my missing nipples bothered me more than I cared to admit.

  I distracted myself from this, and from my post-op recovery, by throwing everything I had into Pink Hope. Before long I was working up to 50 hours each week, in between looking after my two young children, and still there always seemed to be so much more I could be doing. Responding to the emails alone was huge. In the twelve months since I first registered the domain name, Pink Hope was fast becoming the port of call for the 120 000 women in Australia at high-risk of developing breast or ovarian cancer. We’d grown from being a single-page website to a multi-platform community, where women and their daughters (some as young as fifteen) were accessing information and resources and very practical advice on being high-risk. (Advice as diverse as: ‘How to deal with inconclusive gene test results’ to ‘How to host your own boob farewell’, complete with boob-bake-off, boob-themed decorations, pin-the-tail-on-the-boob and, of course, a booby piñata.) Then, we had online state groups which put Pink Hope members in touch with each other within their local area. There was even an ambassador program where young women could nominate to represent their local Pink Hope community. But the thing I was most proud of was our online community, which allowed any high-risk woman, wherever she lived, the chance to chat to other women just like her at any time of the day or night. It was exactly what I’d craved when I first learned I was BRCA mutation positive.

  On top of all this, I was becoming more and more involved in the lives of our Pink Hope members. It was impossible not to. I started going along to medical appointments with some of the women when their own families or friends couldn’t make it; dropping them off at their surgeons or sitting with them during chemo treatments. I was on the phone nearly every night, offering advice or tips or listening while one of our members unleashed her darkest fears to me, relieved at being able to talk freely to someone who wasn’t a family member and therefore not directly involved, or effected, themselves. In that first year alone I must have spoken to around 400 women, talking them through their mastectomies or helping them plan how to tell their children about hereditary cancer or just listening to them cry as they told me they were terminal. It was heartbreaking and awe-inspiring—I was crying on a near-daily basis—and it sure as hell made me forget about my nipples.

  One of the most memorable women I encountered was Rachel Rogan from the South Coast of New South Wales. Rachel was a young mum with advanced breast cancer and, though she was one of the first people to ever contact Pink Hope, I’ve never forgotten the email she sent me:

  Hi Krystal,

  My name is Rachel and I’ve just found out that I have triple negative breast cancer and that it’s metastasised to other parts of my body. Although I didn’t know it until recently, I have a BRCA2 gene fault that was passed down to me via my grandad and my dad. I have three children under the age of six—three beautiful baby boys—and now that I have cancer I don’t know what I’ll do. I’ve never felt so helpless and alone and I’m writing to you in case Pink Hope can do something …

  I was devastated by Rachel’s story. I couldn’t believe that life could be so cruel to one woman and to her (incredibly young) family and so I spent the next four days on the phone trying to see if I could help. I chased up local support services and coordinated volunteers in her area into a visiting schedule; I phoned Woolworths and arranged for food drop-offs to feed her family, then coerced other small businesses in her town to donate various goods and services where needed, given that her medical treatment wouldn’t come cheap. I even managed to recruit a lovely team of locals to come in and help clean her house on a regular basis. I felt if I could make this woman’s life just a little bit easier then somehow my own genetic journey had a purpose.

  But Rachel was a battler and, thankfully, she survived. It wasn’t till a few years later that I got the chance to meet her face-to-face when she came along to our first Bright Pink Lipstick Day event. Bright Pink Lipstick Day has fast become the biggest day of the year on the Pink Hope calendar. It’s a day when celebrities and Pink Hope members, plus friends, supporters and family members alike, all slick on their brightest pink lippie and donate hard to help raise funds for our charity. The idea is to ‘wear’, then ‘share’ (posting photos of yourself on social media), in order to show you ‘care’. It was a simple concept, and one I dreamed up in my pyjamas in front of my laptop while Bonnie was raiding my lipsticks, but since our launch day at The Star at Pyrmont on 28 September 2012, Bright Pink Lipstick Day seems to have taken on a life of its own.

  That first year alone we got 17.5 million imprints from our social media campaign; we trended on Twitter; and a host of generous celebrities jumped onboard to lend their support. Lara Bingle, who has been a long-time friend of Pink Hope, couldn’t make it to our launch event so she snapped a pic of herself in her car, boasting hot pink lips, and that helped to spread the word even faster. Nowadays, Bright Pink Lipstick Day has become so popular that in 2013 we received 92 million imprints in media and social media and had celebs like Olivia Wilde and Sally Obermeder supporting our campaign. With any luck, Bright Pink Lipstick Day will become the first globally recognised fundraising day supporting hereditary cancer.

  Ba
ck in 2012, however, our beginnings were a little more humble. On the day of our launch, around 200 members of the Pink Hope family (media, ambassadors and celebrities) came together for morning tea at The Star, our sea of hot-pink lips clashing brilliantly with the sparkling blue of Pyrmont Bay behind us. Our hosts that day were Karl Stefanovic, Australian television personality, and Whitney Port, American television personality, who happened to be in Australia at just the right time to attend our event. (I’ve always been obsessed with Whitney, with her TV shows and with her clothing line, Whitney Eve; I still have to pinch myself when I think about her support of Bright Pink Lipstick Day.) Our launch was a blast of a day—still one of the best I’ve ever had with Pink Hope—but the highlight for me was always going to be meeting Rachel.

  The moment she saw me she threw herself into my arms and hugged me tight.

  ‘OMG! Krystal!’ she cried, as I started to tell her how thrilled I was to see her, too.

  ‘No—Karl Stefanovic is here!’ she squealed, having spied the breakfast television presenter over my shoulder. ‘You didn’t tell me Karl Stefanovic was coming! I love Karl!’

  And with that Rachel disappeared and I barely saw her again for the rest of the morning! Rachel and Karl happily shot the breeze and posed for photos and generally got on like a house on fire for the next couple of hours. It was kind of like the movie When Harry Met Sally but without that famous dessert scene. Meeting Karl was better medicine than anything Rachel’s doctors could ever have prescribed for her. (And it sure brought me more satisfaction than any number of website hits or marketing dollars ever could. This is what Pink Hope was all about: giving hope.)