Samuel Johnson: "Sharing Connie's story has been a blessing, and a curse."

“As much as [sharing Connie’s story] has been a blessing for the family, so too has it been a curse.”

These are Samuel Johnson’s raw words, spoken to Mia Freedman, just one week after the death of his beloved sister Connie.

Last weekend, the actor spoke about the decision to ‘go public’ with the story of his sister’s experience with cancer, and the impact it had on some of her most cherished loved ones – her two sons, Willoughby, 11, Hamilton, 10, and her husband, Mike.

“Going public was not popular – most of all with me,” he said of the decision to launch Love Your Sister and raise funds for breast cancer. “Connie met a lot of resistance.”

“Overall, though, everyone’s now seen it’s well worth it, and well worth putting our family out there as an example of the other 50,000 families out there all over this country.

Mia Freedman speaks with Samuel Johnson about Connie’s legacy. Post continues below.

“Bit by bit, every family member started to realise this was bigger than us,” he said.

He recalled, however, that the decision to put Connie’s final years in the spotlight were “most uncomfortable for Mike,” Connie’s husband.

“He wanted his wife, and the boys wanted their mum,” said Samuel. “So [Connie] had a lot of guilt about the work that she did.”

“How could Mike not get resentful when Connie’s been away at a conference for four days and three fundraisers… and then comes back and falls in a heap for a week… because she spent all of her energy and all of her heart on trying to deal with this at a national level.

“If you want to do something a little bit great, it comes as a cost,” he said.

Of her last few years with her children, Sam said Connie’s two sons “spent most of their lives in a trauma state.”

“One of the downsides of these drugs that keep you alive is that it gave Connie seven more years, but not seven normal years… seven really shit years”

When asked about how he was coping with the loss of his sister, Sam reassured Freedman “I’m not worried about our family and I don’t want people to be. We’re the most well cushioned family in the country”.

When asked about her husband and sons, Samuel said there was a peace among the boys left behind.

“I went around the day after she died, and it was so calm. The boys were sad, but the pressure was off. This is an opportunity for them to start living a life that isn’t brutalised on a daily level by all that cancer provides.”

Samuel said Connie never wanted to be described as a warrior, she didn’t want to be idolised.

Listen to Mia Freedman’s full interview with Samuel Johnson. Post continues after audio…

“Don’t mythologise her. She’d hate it.”

So what do you call a woman like Connie, who founded a village to support other women with cancer, who raised over $7 million, who lobbied politicians and marched through the halls of Parliament House herself to effect change in Australia’s health policy, who was awarded a Medal of the Order of Australia in her final hours?

“You describe her as another mum doing whatever she can to help herself and help other families. She’s not a hero. She’s a f***ing human.” That’s what Samuel says Connie would have wanted.

To support Love Your Sister – like them on Facebook or head to loveyoursister.org to donate.

Read more

• Connie Johnson has died of breast cancer, aged 40.
• The parenting advice Connie Johnson wants us all to remember.
• Behind this photo of Connie Johnson is the ultimate story of female friendship.