One of the last times I saw Connie Johnson was on a bitterly cold July evening in the Kaleen community hall when, although desperately sick, she wanted to say goodbye and thank you to the volunteers from Love Your Sister who had made the Big Heart Project such a success.
This was not a media event but a private, warm hug from the woman who had created Love Your Sister in a bid to beat breast cancer, not just for herself but for everyone. She had made Love Your Sister into a national phenomenon but Canberra was always its heart and bedrock.
In a wheelchair and sucking on drug relief, Connie was her funny, optimistic self, her face beaming. This was her tribe. Her village. A lot of women - and men - you'd definitely want on your side in the face of any adversity.
The room was full of warm-hearted, funny, no-nonsense, organised women who pulled off one of the great fundraising feats - raising $2.5 million for breast cancer research, most of it in a single day. (With an outlay of just $8000 and all commandeered essentially from Connie's kitchen table in Canberra, but more on that soon.)
Later during a quiet moment, Connie hinted at the utter unfairness that her life might soon be over. Not even touching on the big stuff. Just incredulous that that stack of books by her bedside would never be read. That all the things on her to-do list would never be ticked off.
She'd been fighting cancer for a total of more than 10 of her 40 years, in one form or another: as a child with bone cancer, later as a young woman when it spread to her womb and then, as a wife and mum when the breast cancer was diagnosed in 2010.
Connie had revealed in April she had ceased all treatment as her liver began to fail. But recently, she had been trying a last-ditch medical regime at the Canberra Hospital in an effort to prolong her life. But her liver was not responding. This was it.
Connie told the room on that cold night in July : "I'm getting to the end of my life and I'm getting rid of all my stuff so there's some stuff there, if you want it grab it!".
She'd heart-wrenchingly brought a rack of her clothes to give away to the volunteers. Many of the dresses had come from the boutique of her friend and Melbourne "villager" Karen Ristevski, who had been a big supporter of Love Your Sister before she was murdered.
Connie was just being her usual pragmatic self. She also happily sat at the end of the evening getting a selfie with anyone who wanted one.
"And if you haven't got a selfie yet, I would suggest tonight might be the night for that," she'd said, earlier.
I first met Connie in 2013 and I'd interviewed her several times. I'd never asked for a photograph with her because I felt too awkward. But this was Connie. Social media had been the lifeblood of Love Your Sister. If someone sharing a selfie with her prompted a donation or a breast check or just a second of contemplation about the importance of breast cancer research, so be it. So I got my selfie with Connie.
Later during a quiet moment, Connie hinted at the utter unfairness that her life might soon be over. Not even touching on the big stuff. Just incredulous that that stack of books by her bedside would never be read. That all the things on her to do list would never be ticked off.
I told her I loved that the day before the Big Heart Project, the federal budget had been handed down, a day when Australia traditionally united to hate Canberra. The next day, the national capital was bathed in love from across Australia, thanks to the Big Heart Project and more than 50 million coins being tossed on to the Lyneham netball courts. Connie had actually helped to change people's perception of Canberra. She loved that.
The Big Heart Project was it, raising $2.535 million for cancer research. According to the Love Your Sister website tally, the 'village' has to date raised $5.605 million towards "cancer vanquishment". A massive achievement for two siblings who had endured so much together, not least the suicide of their mother when Connie was just four and Samuel, three.
All the money has gone to the Garvan Institute of Medical Research, save for $200,000 that went to The Cancer Support Group (formerly The Eden Monaro Cancer Support Group).
Questacon had been a big support of the Big Heart Project. Questacon deputy director Kate Driver, who was there on that night in the Kaleen hall, confirmed an amazing array of statistics, including that the Big Heart Project reached an estimated worldwide audience of 20 to 30 million people and that both #Canberra and #BigHeart Project trended for nine hours globally on the day.
"I knew it was going to be an awesome event but what I didn't know was just how awesome and just how big it was going to be."
The Big Heart Project, staged in Canberra on May 10, was essentially organised by volunteers gathered around the kitchen table in Connie's Kaleen home, the base for Love Your Sister. The LYS office was out the back in the garage. All the merchandise was packed from there. All the phone calls and emails answered from this modest house in the Canberra suburbs.
Some of the volunteers at the July gathering talked about the logistics of the Big Heart Project and just how massive it became. How they'd debated about whether to get insurance to cover more than 500 people attending on the day. Would they get 500 people there? In the end, 25,000 people visited the Lyneham netball courts to toss in their five cent pieces and make the world's biggest love heart from the coins.
Like all good mums, whether it's on a P and F committee or for the local sporting club, the Love Your Sister volunteers approached organisations to see if they'd donate their services for the Big Heart event. They estimated they received about $80,000 of in-kind support. If they'd paid the volunteers for all those hours they donated to the event, Love Your Sister's outlay would have been closer to $200,000. In the end, the Big Heart Project cost the committee $8000 to stage, for security.
That's right, this committee of amazing women had turned an $8000 "investment" into a $2.5 million return.
In that hall in Kaleen, with tables down the back groaning with bring-a-plate food, kids playing out the back and pink balloons fluttering on the tables, Connie was determined to show her thanks.
She thought, she told the volunteers, they might raise $200,000 from the Big Heart Project.
"You know, we did more than 10 times that. So, go us," she laughed, to great applause.
"At times during the fundraising campaign, Sam, that snotty-nosed little brother of mine, and other people tried to take it to bigger cities to make it a bigger event and I don't think it could have been any bigger if we'd taken it to New York City.
"I would like to say that I've never been as proud to be a Canberran as I am now. You guys, whether you helped out on the day, whether you helped leading up, whether you were on the committee or a sponsor, every single thing you did, all came together in that massive 80-metre heart that was like this deep with coins.
"When I first conceived of the idea, I was in quite good health, my cancer was stable and in December, I started to go downhill. And there was a part of me worried that I wouldn't make the Big Heart but I did and I'm so glad I got to end my career on such a positive note.
"And I'm so glad I got to do it here at home in Canberra with you guys.
"Thank you so much for everything that you've contributed. It means so much to me. I can't ever thank you enough. I'm just again, I don't want to cry and end things on a sad note, so I will talk about the future a little bit."
"White Lady Funerals, ironically, donated some office space to us. And, yes, they've thrown in for a funeral," Connie said, laughing.
"So we're going to be operating out of White Lady Funerals Belconnen, who've given us an office and some warehouse space."
Love Your Sister would continue to operate with volunteers. They'd answer phone calls and emails. Run a nation-wide program for schools to fundraise for Love Your Sister. Continue to sell and pack off the books and merchandise, from hoodies to swear jars. With every cent going to breast cancer research.
"I haven't been able to field all the calls that have come in and we think with your help, we'll be able to answer every call that comes into Love Your Sister," Connie said, that night.
"And that means the village is only going to grow and grow. I think that we're in the a unique space of being able to build this from the ground up. I think it's only going to get bigger and better in Canberra.
"I thank everyone who came into my home, who bought me cookies, things for the other volunteers, who made it just feel so natural and so much fun, from the very beginning, it's just been so awesome working with you."
"Because it put everything into perspective. You've made us all kinder and we will continue that forever. So you've not only changed all those doctors' lives and all those patients' lives but you've changed a fair bit of the Canberra community as well. So thanks for letting us in."
In some of her more candid moments, Connie was concerned about how much time Love Your Sister did take from her life and whether it should have been given to her sons, Willoughby and Hamilton. She loved them fiercely. She and her husband Mike Johnson (he took her name when they married and ran the Book Lore book shop in Lyneham) moved to Canberra in 2001.
"In a way we're all terminal and we're all going to die. We have the now and we have to do something with it," she told The Canberra Times in 2015.
In another interview in 2013, Connie was talking about Samuel's then planned unicycle ride around Australia to raise awareness and funds for breast cancer research. It seemed another well-intentioned effort at the time but actually became a national phenomenon.
Connie then stated what had always motivated her - for cancer to stop robbing children of their parents. And robbing every person of a loved one.
"[Samuel] asked me what I wanted to do before I died and I said I wanted to spread awareness to prevent other mums from having to go through this and other kids having to say goodbye to their mums," Connie said, at the time.