The night before I meet Connie and Samuel Johnson, I watch the Disney movie Frozen. If you haven’t seen it, the basic premise is that an act of true love can overcome anything. As I watch Connie, 37, and Sam, 36, at our shoot the next day, that’s stuck in my head.
Four years ago, mum-of-two Connie was told she had terminal cancer and would be lucky to survive six months. Her younger brother, Sam, who’s spent the past few decades on and off our TV screens, asked her what she wanted her legacy to be. She set him an impossible task: ride around Australia on a unicycle, raise more than $1 million for the Garvan Institute of Medical Research and breast cancer research, and tell every woman in Australia, particularly young mums, to check their breasts. And so the Love Your Sister project was born.
The short version of a long story is that he did it: He broke the world record by unicycling more than 15,000km and, to date, has raised more than $1.9 million. So an act of true love can overcome anything… but this is a story that’s just beginning.
Spreading the message
“We thought it would be 12 months and then it would be over,” Connie says. “But we’ve started something that people are attached to and we can’t just stop. Love Your Sister [LYS] is about more than just breast cancer, it’s about living in the moment, loving your family. Our Facebook posts give people a lift. It’s a magical thing that’s happened.”
Sam adds: “I was banking on it being over. I’d planned my life post LYS and I saw my arrival back in Melbourne as my end-point, but it was, in fact, only the beginning. The fight’s not over until mums stop dying from this horrid disease.”
Fighting illness together is something this duo are well versed in. This is Connie’s third cancer diagnosis: She was diagnosed with a bone tumour in her leg at 11, an assumed pregnancy at 22 turned out to be a tumour in her womb, and then in July 2010, at age 33, she was diagnosed with breast cancer. She was treated and given the all clear, but requested further scans to reassure herself and doctors finally agreed, given her history. Those scans showed it had spread to her spine, lungs, liver and pelvis. It later spread to her knee, and she was told it was terminal. Her reaction was the seed of the LYS project.
“The thing that kicked me in the face was that my children [Connie and her husband, Mike, have two sons, Willoughby, 8, and Hamilton, 7] would have to grow up without their mum, that I’d have to say goodbye,” she says. “And I knew I’d never be ready for that.
“I knew we had to find a way to get women to check their breasts and I couldn’t think of any other way [than setting Sam his challenge]. Because of his profile, I knew he had a chance of getting people to listen and I was determined he was going to do it. I firmly believed this was bigger than us. Early detection is the only thing that will stop women dying – the only thing that will stop mums dying. I wanted to make mydeath useful in some way so I wouldn’t just be another number.”
Connie had another reason for setting Sam his task. “I wasn’t aware of it until I was well into it, the clever little sod,” he says of his sister’s plan. “What people don’t see is that this project could be called Love Your Brother. Connie didn’t just want to raise $1 million and for me to break the world record. She wanted to make sure her brother was OK before she died.
“I wasn’t in great shape and she wanted me to find some of the happiness she’d had in life,” he adds. “This was a salvage operation – and while I get lauded for being the best brother ever, somehow the fact that she saved my bacon gets lost along the way. She’s done a great repair job on me. She’s fixed me up and sent me on my way stronger. My life has changed irrevocably. Now I’ve got something to live for, too.”
“No amount of money could bring Sam out of the funk he was in,” Connie explains. [Sam battled depression and addictions following a series of personal tragedies, including the loss of their mother when they were very young, and the death of his girlfriend in 2006.]
“Before the diagnosis, I was happy – it was as good as it gets,” she says. “I wanted Sam to have a slice of that happiness, but he needed a really big push. He’s larger than life and has the potential to engage people in a way I’ve never seen. But he’d been channelling his energy in the wrong direction for so long, he’d become negative. Fame had made him distrustful. He wasn’t seeing the good side of himself or other people.
“It’s not that he’s ridden around Australia that I’m most proud of,” Connie adds. “It’s that he’s met so many people that have brought the good Sam back. That’s how he got people to listen – the good Sam came back.”
Sam and Connie celebrate his return to Melbourne in February after a year travelling around Australia on a unicycle to raise awareness and more than $1.9 million for breast cancer research
Making a difference
And listen people did. Early on, LYS heard from a woman who’d checked her breasts after Sam visited her town.
Her cancer detection and treatment mean she’s confident of an “all clear”. “We’ve had so many of those emails now. I feel like, yes, we were heard,” Connie says. “Those mums will now be around to see their kids grow up. They’ll be there for those moments that we grit our teeth through and take for granted.”
Sam adds: “I was fighting just for Connie at first, now I feel like I’m fighting for all women – it extends to every family affected by this disease.”
So what’s next for LYS? Plans are underway, and their fundraising goal has been upped to $10 million. Sam’s wish is to unicycle around New Zealand – “I’ve got it in my head to do it with Anh Do – so Anh, if you’re reading this, give me a call,” he says, laughing – and the siblings have written a book, Love Your Sister (see below), which is on sale from Tuesday.
“Writing this book has been one of the most enjoyable and one of the hardest experiences of my life,” Connie says. “Writing it with Sam has been an honour. We’ve gotten to know each other better – I’ve filled gaps I didn’t know were there. Exposing myself to the world made me feel vulnerable but strong. I know myself and Sam better through the experience.”
Sam agrees. “I was away for so long and I can’t tell you how soothing it’s been for me to spend hours on a balcony together writing. It gave us a chance to sit together and reflect on our lives and on LYS. It was the first time we’d paused to do that and we loved what we saw.”
Meanwhile, Connie is taking each day in her stride. After trialling treatments that didn’t work, doctors found an oral chemotherapy that stabilised her cancer.
“There have been days when the pain has been so great I’ve wanted to check out,” she says. “Those times are only survivable because of the support of my family. Sam is good at getting me to focus my life in a positive way. Now if I’m feeling good, I’m like ‘let’s go to the park!’ How often do you put off doing things like that? I’ve got so much to live for, so much positivity, support and motivation to get out of bed in the morning. These are gifts that LYS has given me.”
LYS proves an act of love can go a long way. It can save lives, in different ways.
“So far I’ve had three more years out of her than I expected, so I’m in bonus territory,” Sam says. “Every day we work together on LYS is a bonus – it’s a gift.”
Connie wants you to…
… make checking your boobs a habit. “Each year in Australia, more than 15,000 people are diagnosed with breast cancer. If you know your body, you’ll know when something is wrong. Be proactive.”
… be aware, not scared. “Checking your breasts doesn’t cost anything, and it doesn’t hurt. But it will hurt a lot if you miss something.”
… stay strong if you’re in treatment. “It’s traumatic but a walk in the park if it means seeing your kids grow up.”
Sam wants you to…
… check your breasts. “We already have a cure – it’s called early detection. Feel them in the shower tonight, get your partner involved… whatever it takes.”
… say yes. “I used to say no a lot in life. Now I say yes – it’s my biggest lesson from LYS.”