CONNIE Johnson was supposed to retire after Love Your Sister’s Big Heart project. By her own admission, she sucks at retiring, because here I am, holding her hand on the end of her hospice bed and listening intently for the message she wants me to pass onto the village.
Her body is weak but her mind and determination is strong. Life is a day by day proposition but she wants to “thank you for the love” and let you know she’s still fighting.
“I live on that knife’s edge every day,” Connie tells me.
“Is it going to be today that that little bit of healthy liver tissue stops working? Because if it was, there’s too much on my to do list. I’ve got too much to do.”
Connie Johnson is at the end of her hard-fought battle with cancer. The road ahead is rough but “the fight must go on”.
Despite the fact Connie “retired” after the Big Heart Project (Connie’s final fundraising act where over 4 million was raised towards cancer vanquishment), Love Your Sister meetings are still being held at Connie’s hospice.
She’s still organising Love Your Sister to move into an office space in Canberra, co-ordinating merchandise and brainstorming what’s next.
“The world is our oyster,” she tells me, with a smile and a twinkle in her eye.
Connie’s body has put her through a roller coaster of problems and phases since moving into hospice. Her health went downhill very quickly after Big Heart Project in July, doctors were talking days not weeks.
Since then they’ve stabilised her medication, but it is a day-by-day proposition.
Connie is spending her nights at hospice, some of her days at home and more recently some time in Canberra Hospital because she lapsed and had to be rushed to emergency.
“At any moment those few little healthy pieces of liver can be taken over by cancer and at that point I go into liver failure.”
I ask whether she’s found any peace with dying and she tells me she’s “not there, there’s just too much to do”.
“I want to take the kids to the circus, we’ve never been to a circus,” she says.
It’s just one of many things on the personal and professional to-do list that she wants and needs to get too.
Connie won’t divulge any plans she has for her funeral but tells me it will be like no other funeral you’ve ever been too.
“It will be more like a party.”
That’s what she wants, a celebration of the years that she’s been given thanks to modern medicine.
So, laying in her hospice bed, she’s still working. Her job, to raise as much money and support she can to kick cancer to the curb.
I ask if something was to happen suddenly, what would she need us to know.
“Thank you for the love, thank you for the support, thank you for the friendship. Live each day, notice the nice moments and now is awesome,” she says.
We love you Connie.
Watch Kristen’s full interview with Connie here.
To help vanquish cancer head to loveyoursister.org.