One day late last year, my seven year-old daughter, Olivia, greeted me at school pick up with these words, “Willoughby’s uncle was at school today on his unicycle, and he told me I had to tell you to check your boobs.”

There were so many things in that sentence that were confusing. Why was Willougby’s (one of her school friends) uncle at their school? Why did he have a unicycle? And why was he concerned with my breasts? It wasn’t until I turned on the television on New Year’s Day to see (with some surprise) Willoughby’s mum and her brother, actor Samuel Johnson, on The Project that the penny dropped.

Willoughby’s mum is Connie Johnson, a Canberra mum of two boys. She’s 37 years old, and she’s dying of Breast Cancer.  She’s also the woman who inspired her brother Samuel to ride around Australia on a unicycle in an attempt to raise $1 million for breast cancer research.

This is Connie’s third battle with cancer; at the age of 11, with the help of early detection and chemotherapy, she fought off a very rare and aggressive bone tumour in her leg. At 22, she overcame a tumour in her womb, again with the help of early detection and treatment. This time Connie’s cancer is terminal. It has spread to her lungs, liver, pelvis, spine and knee and she has a life expectancy of 6-12 months.

“I was having my scans to confirm that the cancer had been killed and that I was in remission .  I knew something was wrong when my doctor called and asked me to come to the hospital as soon as possible and to bring support.  So off I went with my husband Mike and his mum Chris to be told the bad news.  I can’t really remember much of that meeting except for thinking and continually asking “Are you sure there’s nothing you can do?”   Once the news settled in, I started thinking of it in terms of my children losing their mother, and the things that they would miss out on,” she says.

“It wasn’t till months later when I started to think about the things that I would miss out on.  I have periods of time where I get acutely frightened of the actual dying process and how I will be truly on my own even though I anticipate that my friends and family will be there at the time, I will be the only one leaving the room, and I find that really frightening.  I suspect by the time this time comes, I will have had enough of the pain and suffering and might actually leave this world willingly, just to be free of the pain.”

Shortly after Connie’s diagnosis, she was having dinner with her family in her Kingston apartment, when Sam asked what she wanted her legacy to be.

“I told him that I wanted to tell every woman in Australia to check their boobs in an attempt to save just one other family from having to go through this loss.  He said “That’s all very well and good, but how do you propose we do this?”  I said “I think you’re going to have to get on your unicycle and ride around the whole country to raise money and awareness!”  At first he laughed it off, but after a few drinks the idea took hold, and the planning began.”

Sam sold all of his possessions, moved into the spare room at their sister’s place, and quit work so he would have time to train for and organise this epic adventure.  It took 18 months to get the show on the road but when it did, the reaction from the Australian public was incredible. A social media audience of nearly 200 000 people has been part of Sam’s journey around Australia, supporting him every step of the way with good wishes and – most importantly – donations.

“As Sam would say,’This has completely blown my noodle!'” says Connie. “We thought that we would get some support because so many people are touched by cancer in some way.  But, the love, the support, the donations and the media coverage have all surpassed our expectations by miles.  Something we hadn’t expected was that people would appreciate our family bond and sibling relationship so much.  It has actually inspired people to get back in touch with family and spend more time on the important things in life.  I feel honoured to have been a part of such positive change.”

On 13 February, Samuel’s epic journey came to an end in Federation Square in Melbourne, cheered on by a massive crowd – and his loving sister.

“One of our biggest goals throughout the ride was for me to be there at Return.  It was touch and go a couple of times, and I didn’t know if I’d make it,” says Connie.  “But, there’s something magical about Love Your Sister that has had a positive impact on my health and I truly believe it has extended my life expectancy.  Let’s face it, I’m too busy to be sick, and there are too many things on my bucket list for me to give up just yet.

“When I stood on the stage, hearing the announcements that Sam was getting closer and closer, I could hardly contain my excitement.  There were 3,000 people cheering and clapping – it’s hard to describe just how momentous the occasion was.  I’m still processing memories of meeting people, hugging people, signing autographs, doing interviews and talking to people that day.   It was so full-on, it might take me a couple of months to process.”

15,000 women in Australia get diagnosed with breast cancer every year – about 2,500 to 3,000 won’t survive. Connie is spending her remaining days committed to raising awareness of breast cancer and the importance of being breast aware. She says, ” The best defence we currently have against breast cancer is early detection, so please get familiar with your body so if you notice any changes you can get onto it right away.  Be proactive about all aspects of your health because our husbands and kids need us.”

“Appreciate the precious little moments in your life.  Whether it’s a beautiful rainbow after a storm, a lovely full moon or your little one announcing proudly that he’s just drawn you a magnificent mural on his bedroom wall with permanent marker.  It all counts. And hug your kids every day.”

When her time does come, Connie will leave a remarkable legacy – she and Sam’s goals for Love Your Sister have been well and truly exceeded, with Sam’s journey raising $1.6M for The Garvan Institute and breaking the Guinness World Record for the longest distance on a unicycle. He now has a new goal – to raise $10 million – you can help by donating here or by posting a supportive selfie (like this one with Lisa Wilkinson, below) to help raise money and awareness for breast cancer. The message is simple: ‘Don’t fall into the booby-trap, be breast aware!

Images from the Love Your Sister Facebook page.