The cancer crusader and mother loses her battle, but leaves behind an enduring—and fighting—spirit
The cancer crusader and mother loses her battle, but leaves behind an enduring—and fighting—spirit.
Wracked with pain, Connie Johnson sat in a wheelchair on a stage in late June as she told 1,400 University of Melbourne medical students the story of her battle with cancer. Despite being unable to stand, she was determined to be heard by the people who could one day find a cure for the disease that first struck her when she was 11 years old. Connie told the packed auditorium her fear used to be she would die before her boys got to know her, but now Willoughby is 11 and Hamilton is 9, she loves that they will have memories of her forever. Still, “I have this thought that comes into my head all the time,” she told Network Ten’s The Project in May, “where one day I’ll be holding the children’s hands and then I’ll be gone. And my pain will be over, and theirs will just be beginning.” Connie’s pain ended on Sept. 8, when she died in a hospice in Canberra at age 40, with her husband, Mike, 39, her boys and her Gold Logie–winning brother, Samuel Johnson, by her side. It was Sam, 39, who helped make Connie a household name when the actor embarked on his now famous 16,000km unicycle ride around Australia in 2013, raising more than $1 million for cancer research. “We lost Connie today. Or, as she asked me to say, she died of cancer today, ” he wrote on the Facebook page of their charity, Love Your Sister, which has more than half a million followers—or “villagers” as the pair affectionately called their support network. “Trust me, she was genuinely cushioned by your love, till the end.”
Her death came the day after she was awarded the Medal of the Order of Australia by Governor-General Sir Peter Cosgrove for her “inspirational” service to those with breast cancer and for encouraging women to undergo regular screening. “I was so glad they reached her on time—literally within hours,” friend Marie Ramos, a photographer who has taken some of the last photos of Connie, tells WHO. “Sam said her eyes were dancing like when she was a child.”
The next day, at Calvary Clare Holland House hospice, where she had resided since July, her final moments were “beautiful,” wrote Sam. “We laughed, we cried, we sang stupid songs from our childhood to her, which she loved (mostly!). She went so richly, and with such grace.”
It was a life lived in that same spirit. Connie was 11 when she was first diagnosed with cancer (Ewing’s Sarcoma) and 22 when she was diagnosed with a rare—and in her case, cancerous—condition called molar pregnancy. She beat both, but her third cancer diagnosis at age 35 came too late—after a misdiagnosis— and she was initially warned she might not see her 36th birthday. “Sam asked me what I wanted to do with the rest of my life and I said I wanted to prevent other young mums from having to say goodbye to their children,” Connie told WHO in 2013. “Because that is ultimately the hardest thing for me.”
To that end, the siblings founded the Love Your Sister charity, which they called “an entire village fighting against cancer.” It has raised more than $4.5 million for breastcancer research. Sam’s year-long ride, which began as a kitchen-table dare after “a couple of vodkas,” raised $1.4 million alone. “I kind of wanted to do the big sister thing, and change [Sam’s] life a bit, so after I’m gone he would go forward in a really positive
“Sam said her eyes were dancing” —friend Marie Ramos
way,” Connie told WHO at the time. “Sam’s got the biggest heart of anyone I’ve ever met.”
As children growing up with two other siblings in Daylesford, Victoria, Connie and Sam, who lost their mother, Merryl, to suicide as young kids, “were very, very close friends and very, very bitter enemies,” Connie told WHO, laughing. “Every time we played doctors, I was the doctor and he was the patient.” Recalled Sam: “Connie has always been the boss, because she is smarter and stronger. She’s the beacon and the shining light in our family.”
Her “last hurrah,” the Big Heart Project, saw tonnes of donated five-cent coins piled into a giant heart at Canberra’s Lyneham netball courts on May 10. Connie’s idea was to break the record for the “longest line of coins” (75.4km) to raise $200,000. The project, which was filmed in timelapse by Canberra’s science and tech centre Questacon, broke the record and raised more than $2 million. “She came to Questacon for a meeting and was almost doubled over in pain at one point, and Sam was supporting her arm,” the centre’s deputy director, Kate Driver, tells WHO. “But her gaze was strong and determined. Her determination to live and live fully took your breath away.”
The proceeds went towards a new breastcancer lab at Sydney’s Garvan Institute of Medical Research. “I got a call from her the next day and I said, ‘You must be exhausted,’ ” recalls Ramos, who is raising $100,000 for Love Your Sister through an artwork involving people’s fingerprints pressed into tiles in the shapes of hearts, “and she said, ‘No, ‘I’m floating, I’m still floating!’ ” Said Sam: “She built this place with a unicycle and saved it with a five-cent piece. That’s my sister. Straight up.”
She’d been just as straight up in January, when she called a meeting with her medical team. Until then, on a regimen of oral chemotherapy, her condition had stayed stable. Then the disease spread to her liver and “my life was so unpleasant,” she told The Project. “I spent a lot of the time crying and holed up in my room, not even to come out and see the boys, because I don’t want them seeing me like that.”
Then doctors told her that more chemotherapy was impossible because her organs “were struggling too much,” she said. With the chemo over, Connie said, “The cancer will progress.” Asked by TV’S Carrie Bickmore if she was scared, Connie was honest: “Terrified.” Even so, her main concern was for her boys. “Sometimes I see them grappling with what it means when Mum can’t get out of bed for a whole day,” she said. “I feel like I’m letting them down, because I can’t be the mum I want to be.”
For Samuel, who announced on Sept. 11 that a memorial for Connie will take place on Sept. 23 in Melbourne, the inevitable reality of his beloved sister’s prognosis had really struck home when he was taping her final appearance at the university. “I had to wheel her offstage and into the wings, for the last time, and as soon as we were out of sight, we both buckled,” he wrote on the Facebook site on June 30. The weight of “the inevitable lows and insane highs” since Connie’s diagnosis “just came down at once,” said Sam, who dedicated his Logie for his portrayal as Molly Meldrum in Seven’s Molly to her in April, yelling, “I love you Connie!” from the podium. “No matter how empty our tanks are, we will always smile—and we will never ever allow us to become just another hard-luck story.”
No chance of that. In the hours afterwards, Sam sat at his Love Your Sister desk, crying and writing an open letter to Connie. The heartbreaking message, which was posted on Facebook, thanked his sister for “teaching me that now can still be awesome, even when you’ve so nearly run out of now.” He urged “Little Miss Connie Cotton-socks” to keep her chin up “amidst the growing dark, my girl. Thanks for holding my hand along the way. It’s been a stunning f--king ride. I want another turn . . . but cancer is greedier and stronger than us. For now.”
“Thank you for the love, thank you for the support, thank you for the friendship,” Connie Johnson (with Sam for a WHO shoot in 2013) told her supporters in the days before her death.
Connie with the Big Heart Project’s heart of five-cent coins on May 10. “Sometimes when it’s hard to look forward, it’s comforting to look back,” wrote Connie with this photo she posted of her and Sam on Jan. 26. Connie and Sam on June 30. GovernorGeneral Peter Cosgrove awarded Connie the Medal of the Order of Australia on Sept. 7.
Sam and Connie celebrate him finishing his unicycle feat, which made the Guinness World Records, in Melbourne on Feb. 14, 2014.
Her final Mother’s Day with the family (on May 14).
Connie with sons Hamilton (left) and Willoughby, and husband Mike at their home in 2013. “I already know in my heart that they’ll grow up to be fine young men,” she told the Nine Network.
Connie watched Sam win his Gold Logie on April 23. “We’re a tough unit,” said Connie of her and her brother (with supporters in Barwon Heads, Victoria, last year).