The Lucky One

by Krystal Barter

  I should mention here that Karl has gone on to become one of Pink Hope’s secret weapons. He’s a tireless supporter of our charity and the lengths he goes to in helping us are astonishing.

  I first met Karl on the set of the Nine Network’s Today in 2006, when I appeared on the show with Mum and Nan. Karl maintains that, after meeting the three of us and hearing our story, he felt compelled to help support my family and he started the very next day by wearing a pink ribbon on his lapel—a ribbon he wore every morning for the next six months or so. (I have my suspicions, however, that it was the cookies Nan baked for him, rather than anything I or Mum or Nan said, that made such an impression!) Here’s a piece Karl penned for Pink Ribbon magazine, published by the Australian Women’s Weekly, which illustrates just what an exceptional supporter, and all-round nice guy, Karl is:

  When I was growing up, pink was associated with girls, women and Miss Piggy. Ignorance, some say, is bliss. These days, its meaning is associated with so much more than just a colour.

  For four years, I have been presenting Today on the Nine Network, and have been introduced to pink’s other, more serious meaning—breast cancer. Over that time, I’ve met some truly inspirational women. Women such as Sarah Murdoch, who campaign tirelessly for the cause. Women like Jane McGrath, who stared the disease down and said, ‘You will not beat me’. And women who carry the genes of this disease like some ticking time bomb.

  A couple of years ago, I met Valerie, Julie-Anne and Krystal—three generations of women from the same family, all living with the disease in some way. Krystal, 24, was about to be married when she found out she was carrying the BRCA1 breast cancer gene that had been passed down through her family. Krystal bought a pink dress for her special day and said at the time, ‘Some people would wear pink because it’s a beautiful colour. I wear it because it’s the colour of my family. I wear it to honour my mother, grandmother and great-grandmother, so I’ll be taking a part of those three special women down the aisle with me.’

  But Krystal’s mum almost didn’t make the wedding day. Two months before, she and the family were told that she probably only had a few months to live. Scans showed a tumour and it looked like it had spread. She was operated on and finally cut a break. The cancer was non-malignant—even the doctors were cheering in surgery.

  It was almost a horrible case of history repeating. Valerie, Krystal’s grandmother, had cancer when Julie-Anne was getting married. The 69-year-old now lives in New Zealand and, like Julie-Anne, has lost both her breasts. When Valerie comes on the show, she gives me a big hug and a tin of delicious homemade cookies. They have pink icing.

  For the moment, cancer is part of these women’s lives; and, for the moment, cancer is here to stay. I am a supporter of the Breast Cancer Foundation because I have met these women and because I have a grandmother, a mother, a wife and a daughter. And I hope that, one day soon, a cure for breast cancer is found. Then pink can again be just another colour we all wear and not a life sentence for generations of families.

  Since founding Pink Hope, I care so much more and love so much deeper than I ever did before. I’ve found such a true appreciation for my family and my life, and it’s finally allowed me to see my BRCA journey in an empowering way. Working for a charity doesn’t make me a better person than anyone else, doesn’t even mean my work is more worthy than others. But it has made me the best possible version of myself.

  Of course, putting yourself in the public eye and also entering the realm of social media does mean you open yourself up to criticism. Not all the feedback I’ve had over the years has been kind and positive. It only happens very rarely, (in fact, I can count on one hand the negative feedback we’ve received) but Pink Hope has copped some negative backlash, most commonly with people complaining that breast cancer takes too much of the cancer charity limelight. Then there are the ones who take the time to get in touch to tell us that ‘negative thinking causes cancer’ or ‘there’s no such thing as BRCA gene faults; something your family is doing or eating must be causing your cancer’. Or, my personal favourite: ‘genes don’t exist’. Sure, tell that to modern medical science.

  But, above all, Pink Hope has brought into my life some of the bravest and most beautiful women I could ever hope to meet. Women like Sarah-Jane.

  Sarah-Jane and I quickly became close, speaking regularly since she first contacted me several years ago through Pink Hope. Sarah-Jane was a brilliant spokesperson for Pink Hope and was easily one of our top ambassadors. Like me, Sarah-Jane was BRCA mutation positive. She was smart and savvy. She had an incredible job—a highly sought-after global HR manager—and travelled all over the world with her work. Plus, she was in a loving relationship. Sarah-Jane had it all.

  But what Sarah-Jane never had was time. No time to get sick and certainly no time to get cancer.

  Sarah-Jane was still coming to terms with the recent death of her only sister from a BRCA-related breast cancer. Her sister was her best friend and her idol and, having seen her suffer so much, Sarah-Jane wasn’t yet ready to deal with her own BRCA mutation positive status and to take preventative action.

  It was on the day she found out she was pregnant with her first child that Sarah-Jane also learned she had breast cancer. One of the happiest moments of her life quickly became the most terrifying.

  ‘Make sure no one else goes through this, Krystal,’ she said to me from her hospital bed soon after. ‘Help them know their risks and act. No one should have to go through this.’

  It broke my heart to see Sarah and her family suffer so much. In families like Sarah-Jane’s (and like mine) there are often more cancer diagnoses than not.

  Sarah-Jane gave birth to a beautiful baby boy. I remember seeing photos of him, snuggled up to his bald-headed mum who, despite being exhausted from chemo, somehow managed to give birth to this healthy little cherub. We all thought this was the start of Sarah-Jane’s new life.

  But soon it emerged that Sarah-Jane’s cancer had spread to her spine and from there it went to her brain. Less than two years after her initial diagnosis, Sarah-Jane was terminal. Now, Sarah-Jane’s family are doing all they can to make her remaining time bearable. And, while she’s still here to do so, Sarah-Jane wants to spread a message of prevention to all the Pink Hopers and the broader community beyond.

  Just like Tracey Ryan does. Tracey is mum to Erin (aged 26) and Leigh (aged fourteen) and, as I write this, Tracey is in the final throes of terminal breast cancer. Tracey first discovered a lump in her breast in early 2010, when she was at the Royal Children’s Hospital with her son, Leigh (who is chronically ill himself and requires a bowel transplant). Tracey’s lump was stage three, grade four cancer when she found it. After a lumpectomy, eight rounds of chemotherapy and, finally, a double mastectomy, Tracey’s breast cancer was thought to be removed but had already spread to her spine. She has since found another large lump in her breast and, in March 2012, Tracey was told that her cancer was terminal.

  Still, she hasn’t let this stop her. Tracey told me she wanted to share her story on the Pink Hope website, to help and encourage others, and this is what she wrote:

  Hi, my name is Tracey Ryan and I am forty-eight years young. I am married and have two children. I also have advanced breast cancer and, even though I have been told that I cannot be cured, life is good. I am still undergoing treatment and will do so for as long as I can.

  I’m still very much alive and, with the help and strength of my wonderful husband and beautiful children, I intend to remain so for a long time. I look at life differently now; I try not to stress as much and I make the most of each beautiful day. I have my wonderful ‘Pink Daughters’ support group whom I adore and without whom I’d struggle to cope. People like these, and other special friends, get me through the inevitable tough days.

  My message for you is: never surrender. Fight for as long as you can because a cure for this disease may be just around the corner. Love your family, love your friends and love your life with everythi
ng you’ve got.

  We’re women. We’re strong. And life is great.

  Tracey’s cancer has had a devastating effect on her family (a family that has already suffered six other cases of terminal cancer) and this is one of the saddest things we see at Pink Hope: the families left behind. Tracey’s husband, Andrew, and teenage son, Leigh, have both written letters to Tracey which she’s kindly let me include here. This is the letter from her husband:

  To my darling Tracey,

  The past three years since your diagnosis have been really difficult—there’s no other way to say it. The first icy feeling in the pit of my stomach came the day you rang me in Darwin to tell me you had cancer. I wanted to come home right then and there. You told me to stay until I had finished my work but that was a very long three days.

  Things happened so quickly after that—or so it seemed. All of a sudden there was hospital and the chemotherapy. The decision to have the double mastectomy was frighteningly immediate. Your hair fell out quicker than I thought it would and it all got very ‘real’ very fast. I felt bewildered and completely helpless. Other people have cancer; not my wife; not my family. (Especially after all the other crap you’d already been through: the stroke, the hysterectomy and the brain surgery.) I couldn’t accept how unfair it was.

  Once I had a chance to collect my thoughts, I began to feel more confident that we would beat this thing and I felt a little better. I thought about everything positive I’d read and heard about cancer: it’s not necessarily a death sentence anymore; people recover; the treatment options have advanced in leaps and bounds. Plus, you’re as tough and—let’s face it—as stubborn as they come, and I thought there’s no way this was going to beat you. Especially as you just soldiered on, doing your thing—being a mum, over-catering at parties, being a little OCD about the state of the house, and all the other things we love about you and have a chuckle at you about sometimes.

  Then came the diagnosis of the secondaries—the one in your spine and then the rib. And then the news that you were terminal. The world changed for me that day. The positives I’d read and heard about didn’t feel as convincing anymore. It got even more ‘real’. I actually acknowledged the possibility that I would lose my wife and our kids would lose their mum.

  My first instinct was to ask you how long you had but I honestly don’t know why I wanted to know, because—as you know—I tend to just deal with stuff as it comes along. When you told me that your oncologist, Romaine, had tried to tell you how long you had left and that you didn’t want to know, I immediately accepted that for two reasons. Firstly, it was your call to make. And, secondly, not knowing made it more ‘normal’ somehow. Everyone has to die one day and we don’t all know when that will happen, so why should you have to know?

  I have to admit to having some very conflicting thoughts about your disease and about what was going to happen. At one point I even wondered whether it would be better for ‘it’ to happen quickly, so you would be beyond the pain I could see you were in (especially knowing that it was only going to get worse over time). That didn’t last very long, as I mentally slapped myself, because it kind of meant that I had accepted the ‘terminal’ thing as inevitable. I even wondered whether I was being selfish—not wanting to watch as you got worse. But you had already decided to fight like anything so I decided that I would support you all the way.

  It’s been awful seeing you suffer because I can’t do anything about it. That’s the worst part for me. It hurts me to see your pain when I can’t do anything about it. I’m supposed to look after you and protect you but I am helpless against this thing.

  So the only thing I can do is try to help. And I know I often drive you nuts, asking if I can do this for you and that for you and, by the same token, it bugs me when you try to do stuff yourself that you don’t need to do. But I understand; it’s part of you fighting it and not taking things lying down and not being a victim. (Still, it hurts like hell that I can do so little.)

  You’ve probably also noticed I’ve taken to swearing a lot more recently. The reason for that is simple: I swear when I am unhappy. Unhappy about what cancer has done to you and what it’s doing to our family. Unhappy with the inevitable mood swings you have, with your tiredness, with sometimes having to walk on eggshells around you when you’re feeling lousy—all the stuff that nobody ever seems to mention can happen. Even with how it’s affected our physical relationship. It’s my way of venting and of letting off steam so that I can cope. So I apologise in advance for the swearing—it will probably keep on happening.

  What is also frustrating is having to think about a future without you when I really don’t want to. I sometimes find myself about to ask you about funerals and contact details for people so I can tell them when the time comes but then I can’t bring myself to do it because I don’t want you to think about all that. (Even though I know you must think about it at times, especially when you’re having a bad day.)

  I want you to know something, too. Sometimes I suspect that you wonder how much I care because I don’t often show my emotions. You know only too well that I bottle things up and tend to soldier on without appearing to be too upset by things. Rest assured that I care. I dread the thought of losing you, it’s just that sometimes I can’t bear thinking about it, let alone talk about it.

  I wanted to finish this letter on a more positive note. So firstly, I want to thank you for your incredible courage and grace under fire—you are truly amazing. Part of what amazes me is your love, care and selflessness in helping others, particularly the kids and your ‘Pink Sisters’. I remember in your most vulnerable moments, when you feared what was to come, that the one thing you would ask me is to promise you that I will look after the kids. Secondly, I want to thank you for your love for me—you are one of the very few people at all who ever ask me how all this is affecting me. I know I don’t give much away—but I really do appreciate that you ask.

  When we got our latest piece of bad news—that the cancer had spread to your lung and liver—I didn’t know what to think or what to say. I watched you on the phone and saw you slump over the kitchen bench when you got the news and I went numb. When the numbness left me, I felt like I had been run over by a truck. It was the most soul-destroying moment I have ever experienced.

  But since then you have amazed me even more with how you are facing up to this. I want you to know that your fight is my fight as well. Whatever it takes for you to survive past the time we have been given, we will do. We will fight tooth and nail. We will be positive. We will not wait to die; we will live. And I will be with you all the way—and whenever the day comes, I will be there with you. And I will be okay.

  And, yes, I promise to look after the kids …

  With all my love,

  Andrew

  And from her son, Leigh:

  Dear Mum,

  The last couple of years have not been the nicest. But we have always stuck together and fought our way through anything this cruel disease has thrown at us. You’re one of the most beautiful people on the face of this planet; you care about others more than yourself; you go out of your way (even on your bad days) to make everyone happy. I don’t know how you do it.

  When you were diagnosed, it hit me pretty hard. But we talked about it and made choices, planned how we would deal with it. I was and still am very quiet, I haven’t expressed my feelings that often, but that’s just the way I am. After your reconstruction, I saw you in so much pain, the chemo didn’t help either, it just made you look even worse. That was when I realised you were sick. You normally had this glow of … mum. That’s the only way I can describe it, but that was gone during your first lot of chemo. Every night at home, I heard you crying out in pain, vomiting over and over, and I would lie in bed and cry.

  Sure, the cancer made school a bit harder but we are working through it still. My mates have always been there for me, and I don’t know how I would be if they were not there. Everything looked like it was going good for a while
, didn’t it? You were on chemo tablets, you didn’t have to go in for any more operations and you looked healthier. We actually functioned as a normal family for the first time in a long while. So finding out you were terminal hit me like a ton of bricks. Just knowing that you will never be free of cancer made me feel helpless. You always put on a brave face and you tried to smile through the hard moments in the following months and, once again, I don’t know how you did it.

  But the other night, when Dad, Rara and I were watching TV, Dad told us that you went and saw Romaine. He told us that you were told you only had twelve to twenty-four months left with us. I just sat there silent. I knew that one day, in the distant future, we would have to say goodbye, but I always thought this would be ten or so years from now. I feel robbed; robbed of a lifetime with my beautiful mother. But I will be there for you, for as long as you decide to stick around and tell me to clean my room. Never forget that.

  I love you,

  Leigh

  Despite these kinds of personal stories, the odds were stacked against Pink Hope. Nothing else like it even existed in Australia so I surrounded myself with people who had good medical expertise and business nous, IT support and legal advice just to get it off the ground. Not to mention a helluva lot of time and energy on my part and the part of my family, plus the generous participation of thousands of brave high-risk women. Somehow, together, we managed to make this audacious idea work and there was only one person more surprised about it than me.

  Associate Professor Judy Kirk is the director of the Familial Cancer Service at Sydney’s Westmead Hospital, a position she has held for near-on twenty years. Professor Kirk specialises in genetics, caring for families whose incidence of cancer suggests a gene fault might be at play. I never met Professor Kirk as a patient, but rather I was introduced to this intelligent, articulate woman when I first dreamed up the idea of Pink Hope and was doing the rounds of Sydney hospitals trying to drum up support and seeking input from experts in the field. Professor Kirk’s input was brief.