THROUGH her brave seven-year struggle, Connie Johnson became the public face of breast cancer awareness.
Johnson, the sister of Gold Logie winning actor Samuel, became a public face of breast cancer awareness through her Big Heart Project, as she fought a brave battle with the disease for the past seven years.
She spent her final days in a hospice surrounded by family and friends.
Her death came just hours after Governor-General Sir Peter Cosgrove visited her in her hospice bed to award her an Order of Australia for her work on breast cancer research.
“This was just in time,” Samuel posted on Facebook. “I wanted to tell you first before you hear about it through the media — her time is nigh. Let’s prepare, villagers. It’ll be very soon.”
“Is it going to be today that that little bit of healthy liver tissue stops working? Because if it was, there’s too much on my to do list. I’ve got too much to do.”
“At any moment those few little healthy pieces of liver can be taken over by cancer and at that point I go into liver failure.”
“I want to take the kids to the circus, we’ve never been to a circus,” she says.
On the Love Your Sister Facebook page Samuel said his sister had taken a break from social media to deal with what was to come.
“Con’s needed a lot of quiet time lately to try and comprehend the total headf**kery that ‘actively dying’ brings,” he wrote.
“She just rang from the Hospice and admitted that this is the most difficult thing she’s ever had to face, but in true Connie style she’s been colouring in to keep the nasty thoughts at bay! She said to tell you that there’s life in the old dog yet.
Connie became a star of April’s Logie Awards when Samuel dedicated his win to his sister.
“My sister is succumbing finally to the perils of cancer after a three decade long tussle and rather than rolling over, she’s going out blazing with an attempted world record for the longest line of coins, absurdly,” he said.
Anh Do interviews Gold Logie winner Sam Johnson about the day his sister was first diagnosed with cancer, for Anh's Brush With Fame, ABC, 8pm, July 5 2017." Supplied by ABC.
“On behalf of my beautiful sister Connie, who I dedicate this award to, I would like to urge any family watching affected by cancer or not to join us in our quest to keep our families safe from the terrors of cancer.
“Love your sister.org or Love Your Sister on Facebook. I love you, Connie, I love you.”
In May Love Your Sister — — the fundraising organisation Connie and Samuel started together — raised $2.2 million for breast cancer research at the Garvan Institute through the Big Heart Project and set a world record for the biggest heart made from five cent pieces.
Connie, Samuel and their sister Hilde were raised by their father in Daylesford, Victoria.
After battling bone cancer at 11 and for a tumour in her womb at 22, Connie was diagnosed with breast cancer in her early 30s.
In an interview with The Project in May, Connie told the Channel 10 program about the heartbreaking moment she was told she could no longer undergo treatment.
“They told me I couldn’t continue on the chemo because my organs were struggling too much,” she said.
“Once the chemo stops, the cancer will progress and whether that starts immediately or whether it’s a slow build I will go into liver failure and it’s very peaceful,” she said.
Ms Johnson said she was “terrified” of dying and the prospect of saying goodbye to her two young sons.
“I have this thought that comes into my head all the time, where one day I’ll be holding the children’s hands, then I’ll be gone,” she said.
“I will be focusing on my children. And spending the time with them that they need and what I’m desperately longing for.”
In an interview with the Good Weekend Connie told of how the pair dealt with her cancer diagnosis over ‘vodka and Jim Beam’.
“When we first talked of my breast cancer diagnosis, we had a bit of a face-off in the kitchen,” she said.
“It was just a moment of rare honesty: him and I and a vodka and a Jim Beam and this truth, this massive truth hanging in the air that I was dying.
“Just both of us searching for some sort of meaning in the chaos. Some sense in the senselessness.
In 2013 Johnson raised $1 million for the Garvan Institute when he cycled 15,000km across Australia.
He shared the heartbreaking story of his sister Connie’s first cancer diagnosis, telling Anh Do on Anh’s Brush With Fame on ABC: “I really don’t remember life before my sister had cancer”.
“I’ll never forget the afternoon that I found out,” Samuel Johnson said.
“(Dad) drove an old s**ty blue Torana at the time. I looked through the window, and my sister was in the front seat (huddled), like this, wouldn’t look anywhere.
“Then I looked over at my dad, he was just white. I was like, ‘s***, something’s gone wrong here man’.
“Before I could ask — and I’ve always been a good lip reader, because I’m half deaf — I read his lips. He looked at her and said, ‘stay here’.
“He walked inside, and ignored me. I followed him inside, and he was curled up on the couch, in the foetal position, sobbing. Weeping, just bawling. I don’t know if you ever remember seeing your mum or dad crying for the first time,” Johnson asked Do.
“In a moment that changed my life I said ‘what do you want your legacy to be’?,” he said.
“And Connie breathed in with what I like to say was more gravitas than the Queen of England and decided then and there that she wanted to remind every young mum in the land to check their boobs.
“Because mums just forget about their health — your children just come first — and you end up putting your own health issues further down the line.”
In that interview on August 31 Connie was asked what she wanted the world to know.
“Thank you for the love, thank you for the support, thank you for the friendship. Live each day, notice the nice moments and now is awesome,” she said.
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