Love Your Sister: Connie Johnson in race against time in breast cancer battle

CONNIE Johnson isn’t sure exactly how long she has left to live. It could be a year, or maybe two. So she’s making the most of every minute.

ON her better days, Connie Johnson has eight good hours. In that time she can drive her car and collect her sons, Willoughby, 8, and Hamilton, 7, from school. Afterwards they bake or huddle together and read books.

These moments are precious for Connie, 38, who has breast cancer — her third battle with cancer since childhood. This time, it will be a battle she won’t win.

But until then Connie and her actor brother Samuel Johnson are determined the feisty mum will make a difference to the lives of families across Australia.

The unicycle Samuel rode around the country last year raising funds for breast cancer research in Connie’s honour has been packed away. But Connie’s aim now is to raise $10 million for research and ensure more young women become breast cancer aware.

“I’ve lost count of the number of women who’ve said they got early detection because of our message. We have saved lives and I still can’t believe it,” Connie says.

A new project for the Love Your Sister charity, founded by Connie and Samuel, is to raise money by encouraging people to tick off a bucket list item. In order to motivate them to fulfil their dream, friends and family would sponsor them, with all funds going to Love Your Sister.

“I noticed that when I told people I was dying they reacted by telling me what they would do if they found out they were dying. They reacted like it would give them an opportunity to do what they can’t do in their day-to-day life,” Connie says.

“But when you find out you are dying, that’s not the time to achieve your dreams because you’ll be tied to hospital appointments and treatment. You might lose your job, so money becomes tighter. It isn’t the time to live out your dreams — the time to do those things is now.”

When Connie isn’t raising funds for Love Your Sister, her focus is on creating lasting memories for Willoughby and Hamilton at their Canberra home.

“Willoughby is a real little MasterChef,” she laughs. “He loves being in the kitchen and cooking for people. Hamilton and I read together. He can read to an advanced level but he still enjoys Mum reading to him.”

Connie found out she had advanced breast cancer in July, 2010, on Willoughby’s fourth birthday. At the time her oncologist said they were aiming for a cure, but in February, 2011, Connie was told her cancer was terminal. Soon after, Love Your Sister was created.

The Bucket List will launch later this year or in early 2016 and Connie has a few items on her own bucket list.

“Raising $10 million for research is my biggest bucket list item but I also want to finish my scrapbooks of the kids’ lives and our time together. And I would love to go to France. I love the French language and culture. I’ve learned to speak French and my kids go to a bilingual school,” she smiles.

“I’d love to see them go to a cafe and order in French — to see them be little Frenchies. I’ve never been to Paris and I’d like to spend time in a country town. I want to go to the local shops, talk to the locals, take in the scenery and enjoy some good French cheese and wine. It’s very difficult for me to go to France because with a terminal diagnosis you can’t get travel insurance. But we may have found some sponsors to insure me privately. And, of course, my daily bucket list item is to make the most of the time my family and I have together.”

When she was initially diagnosed, Connie was given a life expectancy of three years. She’s surpassed that and her cancer has been in a holding pattern for the past year or so.

“I’m not in remission and I’m not cured, but the cancer has stopped growing for now. My pain is controlled and I’m able to live a little,” she says.

“Now my specialist talks of a life expectancy of more than a year, maybe two years. But it’s difficult to adjust to that time frame because most of us are future driven. But in my situation you have to live in the now and that means I enjoy my kids while I’ve got them, I enjoy the days when I feel better and stronger and I try not to get angry with myself on days when I have to spend the whole day in bed.”

Samuel admits he’s struggling to come to terms with the fact that he will prematurely lose his sister.

“I’ve been beating the breast cancer drum for three years with Con but I’m no closer to comprehending the imminence of my sister’s death,” Samuel says quietly.

“Connie and I have gone to these incredible lengths to try and help ourselves face it, to help the country face it but the truth is, I can’t face it. I’m more confused than ever.”

Connie takes heart in knowing Samuel is a steadfast support for her children. “ I’ve stopped thinking that Sam and I are as close as we can be because every time I think that, we get closer.’’