The Governor-General Sir Peter Cosgrove dropped by Connie's bed on Thursday to award the mother-of-two a Medal of the Order of Australia in recognition of her tireless work for others battling breast cancer.

Actor and brother proud Samuel Johnson described the moment on social media, and 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.

"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!'"

Together the Johnson siblings have raised millions for cancer research, including more than $2 million during the Big Heart Project in May that saw a Canberra netball court become a silver sea of 5 cent coins.

The office of the Governor-General confirmed Sir Peter visited Connie in hospice on Thursday and invested her with the Medal of the Order of Australia in the General Division "for service to people with breast cancer".

He described her as "a determined, inspirational figure and a great Australian".

It is understood she was to receive the honour at next year's Australia Day awards, but, with Connie's time limited, the ceremony was brought forward.

"It so nearly didn't happen," Samuel told Fairfax Media. "Connie was fading and we weren't sure she'd be conscious for it.

"The General cut through all the red-tape and just came right away, pushed the whole thing forward. He made her feel like a million bucks and charmed the socks off the entire family."

Samuel said Sir Peter 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.

And it seems the honour was "just in time". In the same breath, Samuel announced his sister's seven-year battle with cancer was rapidly coming to an end.

"Her time is nigh. Let's prepare, villagers. It'll be very soon," he said on Thursday.

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, 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."

Connie's focus contracted down to her husband Mike and two children, Willoughby and Hamilton. From her room at Clare Holland House on the north-eastern edge of Lake Burley Griffin, she could watch people jog and cycle past, surrounded by family photos, balloons and quilts.

It was here that Connie received her medal on Thursday. Official Secretary to the Governor-General, Mark Fraser, delivered the official citation, explaining 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," he said.

"...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 brought "great joy" to Connie and the family.

"That's certainly not why Connie does what she does...But if we're honest, it validates the tireless work of our half million strong village and our efforts to vanquish cancer," he said.

On Thursday night, those "villagers" flooded the Love Your Sister Facebook page with messages of good will for the Johnson clan. Some joked with Samuel about Connie's medal outranking his own Gold Logie.

The Governor-General awarded more honours to Australians at a formal investiture ceremony on Friday.

On Friday evening, Samuel announced via the Love Your Sister Facebook page that Connie had died.

"We lost Connie today", he wrote.