Samuel Johnson's sister Connie passes away

'OUR CONNIE'

For many cancer sufferers around Australia and beyond, the brave smile and warrior attitude of Connie Johnson represented daily doses of inspiration.

The sister of Logie-winner actor Samuel Johnson carried the weight of her illness with grace and courage throughout her three-decade battle with cancer.

And though her fight reached its end on September 8, despite her death, the incredible legacy of the late 40-year-old will live on in the hearts and minds of Australians.

Mother-of-two Connie was first diagnosed with cancer as a child, undergoing treatments for bone cancer at age 11 only to then have a tumour found in her womb at 22, and most recently as breast and liver cancer.

The last stage of her diagnosis saw her given six months to live; she fought on for another seven years.

She endured a double mastectomy, radiaotherapy, chemotherapy and many other invasive and debilitating treatments, many while mothering her young boys, aged nine and 10.

She was sustained by her family, saying she wanted to create good memories with them.

“My legacy with my family is that I like playing board games with Willoughby, that I like watching Hamilton get better and better on his unicycle and his skateboard and his scooter and his bike, and encouraging those interests and sharing the little moments, “ she said in an interview with the ABC, “because that’s the stuff I remember form my childhood and I really want them to have those fond, just normal childhood memories with their mum.”

Connie also spoke about the "terrifying" moment she will be forced to say 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," Connie told The Project earlier this year.

"My pain will be over, and theirs will just be beginning."

Connie married husband Mike in 2004, saying on a later anniversary that the pair had taken their wedding vows not knowing what was ahead of them.

“We said "in sickness and in health,"” she wrote in a post to the Love Your Sister community, “and now Mike is my carer, facing issues like 'What will life will be like without my wife?' and 'How will I tell the kids that they won't be able to see Mummy again?'”

Before her death, Connie spoke candidly about the decision to end all her treatments after almost thirty years fighting cancer.

"So that's 10 to 11 years of cancer treatment in a 40-year lifespan and I guess my organs are just saying, 'No more. No more'," she told the Canberra Times.

Connie revealed she was unable to undergo further chemotherapy treatment after the cancer started attacking her liver, and the treatment was only causing side effects.

"And I thought maybe it was time to consider stopping treatment,' she said. 'So we called a family meeting. And basically, it wasn't my choice.

"I can't have any more chemo medically. So that's a game changer.

"I asked what to expect and at some point the tumours will grow back and grow bigger and I'll go into liver failure and I'll sleep a lot. Apparently it's quite peaceful."

She also spoke about the difficulties she faced once the reality of ending treatment sunk in for her- and her family.

"The conversation has had to change from, 'We're still working, there's still options' to 'There's no options left and we have to come to terms with the fact mummy's going to die'" she said.

But even as her health declined, Connie's indomintable spirit remained bright.

"Lately it’s been hard for me to find the positives," she once wrote.

"I have been mourning the loss of lots of my bodily function. I can’t walk anymore. Breathing has become difficult with the swelling of the liver. Sitting up is difficult with the swollen abdomen. Eating has become a bit of a chore rather than something pleasurable and I have been feeling cheated out of those normal daily experiences.

"But today I realised that I still have my mind, there's no cancer there. I still have my hands and my arms for hugging my children, I still have eyesight for seeing my friends, I still have my hearing for lovely conversations and music. I still have a couple of hours a day when I can do my craft. These are things to celebrate, I just feel so wonderfully happy!"

RELATED: Samuel Johnson’s heartbreaking message to Connie

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Of all the relationships in Connie's life, it was the love between 'Little Miss Connie Cottonsocks' and her 'ever grotty and very sad little brother, Sammy Seal' that went to the heart of Australia.

The pair set up the Love Your Sister charity back in 2012, with the mission of raising funds for cancer research, and in 2014, the actor raised $1.75 million cycling over 15,000km across Australia on a unicycle and setting a Guinness World Record in the process, and later collabroting on the Big Heart Project.

The actor's clear love for his sister- and his dedication to her cause- endeared him to the public, who rallied behind the sibling's fundraising efforts.

It was Samuel who expressed his and his family's deep pain over the prospect of losing Connie, and vowed to care for her children after her passing.

In the last weeks of her life he moved many to tears with a written tribute to her courage.

"I wish I could soften your pain, or lessen your fear, or give you something tangible, but tangible clearly isn't in season," he wrote.

"I'm proud to walk you to the hardest part of the road. The end. The only part of the road in your life that must sadly be traveled alone.

"Chin up please, amidst the growing dark my girl. Shoulders back. Stand tall through that savage march, stand big and tall, dear sister, for you have lived a life to be proud of. You've loved well, and you've been loved well which is all that really matters in the end, I suspect. I won't finish with I love you, though of course I do.

"I'll finish with a simple thanks.

"Thanks for holding my hand along the way. It's been a stunning f---ing ride. I want another turn, for we've spent our lives taking turns, but cancer is greedier and stronger than us. For now."

Connie Johnson, the face of the Love Your Sister, had her passing mourned by many.

“We lost Connie today,” a post to the Love Your Sister Facebook page read on the day of her death.

“Or, as she asked me to say, she died of cancer today. It was so beautiful. We laughed, we cried, we sang stupid songs from our childhood to her, which she loved (mostly!).”

The sister of actor Samuel Johnson only received the Medal of the Order of Australia on Thursday from Governor-General Peter Cosgrove.
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