The moving story of how Connie Johnson almost didn't receive her Order of Australia medal.

Connie Johnson was is in the final hours of her life when she was awarded an Order of Australia medal for her diligent efforts to spread awareness and raise millions of dollars to fight cancer.

Shortly after receiving the honour she fell asleep, and never woke up.

Her brother and fellow Love Your Sister campaigner, Samuel Johnson described the moment as joyful in a raw and honest interview with Mia Freedman on her No Filter podcast.

Listen: Sam describes the lead-up to Connie’s OAM honour. (Post continues after audio.)

“It was perfect. Every part of it was perfect. She heard every word. She heard not just from her family, but she heard from the government that she did put in a great effort… and that her work won’t be forgotten and will be continued,” Sam told Mia.

“She’s just overjoyed. The Governor-General left us alone for a while. We smiled and laughed and she fell asleep and never woke up.

“She went out on top.”

However, this “perfect” moment almost didn’t happen. Sam explained to Mia that a number of bureaucratic hoops were set up for them to jump through, but in the end, it came down to a decision by Governor-General Peter Cosgrove that made it all possible.

“So they rang on the Monday that she was becoming very chronically ill… and they were like ‘we’ve got to send some paperwork through and if you sign that and send it back’ and we’re like ‘man, she can’t sign shit’.”

Despite telling the person on the other line that it would be possible if they faxed the paperwork and then couriered it back, "the paperwork never arrived".

"The next day I'm thinking, 'Well forget about it. The OAM's not going to happen.' This is the day where she's going to fall unconscious."

Sam explained there was a particular rush to award the medal before she died because they can't be given out posthumously.

He said when the office of the Governor-General called the hospice to ask them if he could come in that day, at first her older sister Hilda turned him away.

"She said, 'She's not strong enough mate. She's literally going now. We don't have time for your processes'."

"And they rang back and said, 'Look, Peter Cosgrove really wants to come'."

However, the family were hesitant. Sam explained the process could have taken hours - time they didn't have.

"The staff have to all clear their cars out of the car park. There are massive security measures that accompany the Governor-General."

Cosgrove made good on his word though, forgoing normal security protocols in order to get to Connie's hospital bed in time.

"He just came in on the (down-low) and just rushed over and brought only four people with him and literally just went straight to her bedside."

Sam said what followed was a beautiful moment as Connie was roused to the sight of Peter Cosgrove and an OAM.

"It looks like the smallest smile... but it was an ear-to-ear smile on the inside. She just didn't have the energy to move her face properly."

You can listen to Mia's entire conversation with Samuel Johnson on No Filter.

You can subscribe to the show at apple.co/mamamia