Just one day after being awarded one of the highest honours in Australia, Connie Johnson has died of cancer.
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"We lost Connie today", brother and actor Samuel Johnson announced on Friday night.
"Or, as she asked me to say, she died of cancer today."
The Canberra mother-of-two was surrounded by family at her hospice bed at Clare Holland House, where she was facing the end of a long battle with breast cancer.
"It was so beautiful," Samuel said. "We laughed, we cried, we sang stupid songs from our childhood to her."
"She went so richly, and with such grace. Trust me, she was genuinely cushioned by your love, till the end."
On Thursday, the Governor-General Sir Peter Cosgrove "cut through the red tape" to award Connie a Medal of the Order of Australia in recognition of her tireless work for those with cancer.
The honour came "just in time", Samuel said.
"It so nearly didn't happen," he told Fairfax Media. "Connie was fading and we weren't sure she'd be conscious for it."
It is understood she was to receive the honour at next year's Australia Day awards, but, with Connie's time rapidly running out, the ceremony was brought forward.
"The General just came right away, pushed the whole thing forward," Samuel said. "He made her feel like a million bucks and charmed the socks off the entire family."
Connie was diagnosed with terminal breast cancer in 2009, after previously defeating a tumour in her leg as a child.
She launched the charity organisation Love Your Sister in 2012 in an effort to raise funds for cancer research. In February 2016, Samuel announced his retirement from acting in order to help focus on Connie's fundraising efforts.
Together they raised millions for cancer research, including more than $2 million in May when a Canberra netball court became a sea of silver five cent pieces for Connie's Big Heart Project.
On Thursday night, Samuel described how Connie's eyes danced "like when we were kids" as the medal was handed down with a little pomp and a lot of laughter in a quiet, bedside ceremony with Sir Peter.
"She looked so alive," Samuel said. "My heart is complete."
"Afterwards, she looked at me sideways, coz she can't move her head too well, and she kept saying, in her weak and raspy voice...'Can you believe it? Can you believe it? Look what we did. We did something!'"
During the ceremony, Sir Peter described Connie as "a determined, inspirational figure and a great Australian".
Samuel said he even insisted the ceremony end with a kiss.
"The general gave Connie a so sweet peckle on the forehead...It was so special," he said.
Connie, 40, made the decision to end all treatment in April this year. While her health was initially dire when she first arrived at the hospice in July this year, for a time her condition stabilised.
In August, Connie spoke to Fairfax Media of her determination to stay alive for her younger son's 10th birthday later this month.
"I've been told I really suck at retirement," she said at the time with a smile.
"The memories from the Big Heart Project sustain me every day.
"It's mind-blowing to know that our community is so strong and I'm part of it. I'm so proud to be a Canberran...It's real, it's real."
In her final days, Connie's focus had contracted down to her husband Mike and two children, Willoughby and Hamilton.
From her room at Clare Holland House on the edge of Lake Burley Griffin, official secretary to the Governor-General, Mark Fraser, delivered the ceremony citation.
He said Connie's leadership of the Love Your Sister Village had "done much to encourage other Australian women to undergo regular screening" and raised vital funds for cancer research.
"She's become one of this nation's foremost advocates of the importance of early detection, and the need to find a cure.
"...She's achieved in a few short years what most people could only hope to achieve in a lifetime.
"Mrs Johnson's efforts for our community will endure and make her most deserving of our nation's gratitude and admiration."
Samuel said, while the accolades didn't ultimately matter, the honour validated the efforts of Connie, and "our half million strong village" to vanquish cancer.
On Friday night, those "villagers" flooded Connie's online tribute wall to pay their respects to the driving force of Love Your Sister. .
Samuel led the charge, writing: "Thanks for everything, Connie Cottonsocks. It was my pleasure to be your Sammy Seal."
The Johnson family has encouraged supporters to leave a message on Connie's tribute wall at loveforconnie.org.au
The story ‘Love Your Sister's Connie Johnson dies from cancer’ first appeared on The Sydney Morning Herald.
