The can­cer cru­sader and mother loses her bat­tle, but leaves be­hind an en­dur­ing—and fight­ing—spirit

WHO - - In this Issue - By Michael Crooks. With re­port­ing by Rachel Sy­ers lovey­our­sis­

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).

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