Connie Johnson was an inspiration, but she was also a wife, a sister, a mother and a friend.
Ten days after she died of breast cancer, Samuel Johnson has appeared on The Project to talk about sister Connie‘s legacy and what is next for him and their family.
Coming straight from the funeral, the interview had the majority of the TV panel in tears as soon as he began to speak.
“All things considered, I’m doing well. It was beautiful, just as she planned, it’s weird to use the word perfect for a funeral but it was,” he said.
He said Connie's husband Mike was "strong".
He described Connie as "over the moon" at receiving the Medal of The Order of Australia by General Sir Peter Cosgrove in her hospice bed in Canberra on September 7, just before she died.
"We all know that trophies aren't what it's about but to have that recognition from the government of Australia, she was over the moon, it was great for all of us," he said.
"We had about half an hour to get her laughing and then she fell asleep and didn't wake up. She went out on top."
EXCLUSIVE: Mia Freedman speaks to Sam and his family about Connie's legacy. Post continues after audio.
When asked by Carrie if Connie realised the impact she'd had on so many other people's lives, he said "By the end, she sure did".
Working closely since her diagnosis, Samuel said the biggest lesson Connie taught him has happened after her death.
"It took for Connie to die for me to learn... I've always placed myself as the student, really it's only in her absence that her lessons have become as profound," he said.
"I thought that our quest to raise $10 million was it, I thought my role was to be the chief custodian of her legacy. I've figured if that's it, I haven't learnt my lesson. She wasn't training me, it was just an apprenticeship.
"I've appointed myself as Head of Cancer Vanquishment in this country. I'm going to accelerate and push for a cure. I'm not going to stop. I'll employ any tactic. I've realised I could shake tins in small towns for the rest of my days and it won't go close enough."
He said he'd realised that up until now he had been playing the small game and that Connie, who privately campaigned in Canberra, had it right.
"I've realised this isn't the end, it's just the beginning. She was training up her little brother," he told the panel.
He also announced a new way Australia can help fundraise for Cancer research - socks, named after his sister's childhood nickname Connie CottonSocks.
"Seeing as Carrie has the whole Beanie thing covered, we thought we'd bung out some 'Connie Cottonsocks' and together try and cover this cancer conundrum from head to toe," he wrote on the Love Your Sister Facebook page straight after the show.
"Connie doesn't have any use for your sentiment now. If she wanted anyone to take anything from her life, it was to highlight the importance of medical research. And we all need socks, right?
He asked everyone to buy his socks, share the post and push for a cure so families don't have to keep going through the trauma and pain that cancer causes.
"I want my sister back but seeing as that's not going to happen, I might as well sell some f***ing socks so that other families don't have to go through this pain," he finished.
Listen: Samuel Johnson is ok. Post continues after audio.
The socks are available in two colours, pink "Connie Cottonsocks" and blue "Sammy Seals". You can buy them (and donate) here.
"When I told her the idea she said 'Sam, you've done this your whole life, you have to turn everything into a sockularity test don't you'," he told The Project.
Johnson was diagnosed with cancer when she was just 33 years old and told she had just months to live. It would be seven years until she died of the disease.
In that time, Connie and Sam have raised over seven million dollars through Love Your Sister, a charity they founded together in 2012 to raise money for cancer research and find a cure.
Three million of that has gone to the Garvan Institute which has established the Connie Johnson Breast Cancer Research and a living tissue lab which is "far more vital" than any cell or mouse trials.
The charity turned into a village of half a million who have followed Connie's journey and shared their own experiences of how cancer has affected their lives.
Connie's private funeral was held today and a public service will be held in Melbourne this Saturday.
Her passing was announced on the Love Your Sister Facebook page by Sam on September 8.
"I’m sad and sorry to be the one to tell you this, yet at the same time, as the Chief Custodian of my sister’s legacy, I also feel extremely grateful and proud," he wrote.
"Connie Cottonsocks. It was my pleasure to be your Sammy Seal."
While Connie Johnson's spirit and strength of purpose was rare, breast cancer is not. To help further her cause, please donate to Love My Sister here.
Read more...
Connie Johnson’s “rant” about the cruel reality of cancer is being shared by thousands.
Samuel Johnson’s heartbreaking tribute to his sister Connie during her final days.
Behind the success and fame, Samuel Johnson’s life has been marred by loss.