Woman behind Love Your Sister campaign halts chemo
SHE'S shared every part of her seven-year breast cancer battle with her adoring Facebook followers and now Connie Johnson has called a halt to treatment, but not before one last "hooray".
The sister of actor Samuel Johnson wants to raise another $1 million for breast cancer research in one final fundraising effort, through the Big Heart Project in Canberra.
It comes as Connie's massive support network received the news she has ended all treatment for the cancer she has battled for seven years.
It's been a journey shared via the Love Your Sister charity she set up with her beloved brother Sam, when he quite acting and rode around Australia on to raise funds for breast cancer research.
The Love Your Sister Facebook page boasts more than 350,000 followers and the organisation has raised more than $2 million for cancer research.
Connie, 40, and a mother of two, has ceased all treatment because her cancer had again attacked her liver. She told the Canberra Times another round of chemotherapy had not helped.
It's been seven years since she was diagnosed and given six months to live. She has undergone a double mastectomy, radiation and chemotherapy, and countless medical procedures.
It followed three years of treatment for bone cancer at the age of 11, and a tumour in her womb at 22.
Now, at 40, "I guess my organs are just saying 'No more. No more," she said.
She 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", she said.
"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."
Regular updates on the Love Your Sister page from Connie provide heartbreaking and stoic insights into her fight, of late carrying the hashtag #nowisawesome.
In February, she frankly posted things had been "pretty crummy of late", but celebrated a visit from Sam in which he 'broke me out of the hospital for some gate leave with the kids'.
"These are the moments that make life worth living," she said, closing with the #nowisawesome hashtag.
When one of her followers said they were praying for a miracle, Connie replied: "I have had my miracle ... when I got diagnosed as terminal all I wanted and hoped for was to live long enough that my boys would remember their mum. I got that, they know me, know how much I love them and will always remember their Mum. I definitely got my miracle!"
News the cancer was back in her liver came late last year. Connie started a fresh round of chemotherapy in a bid to "buy me some more time with my wonderful friends and family".
In December she allowed herself a rare angry "rant" about the reality of her cancer.
"Most days I can see the bright side, most of the time I feel grateful for what I have, but there are days when I just get fed up," she wrote.
"I have had it up to here with cancer and it's time to drop my lolly.
"There are the obvious things about cancer, the nausea and fatigue, the hair loss and the pain. "Then there are the things we don't talk about," she continued, cataloguing the realities of constipation from pain medicine, sweats, vomiting, legs so swollen she could not walk, tastebuds gone haywire, and being "scared to leave the house because I don't want to wet myself in public, or end up in a gutter throwing up".
She confessed to hating being bald, and covering "all the mirrors in the house so I don't accidentally see myself and get that brutal reminder that I have cancer".
"Once cancer has metastasised it is NOT curable. I will not survive this cancer. No matter how positive I am, I will die of this disease. The best I can hope for is to live a bit longer, knowing that the life I do get to squeeze in will be full of appointments, waiting rooms, needles, medication, and side effects."