Kevin O'Connor has lived close to cancer for almost all his life.
A mutated gene, the BRCA1, which increases the chance of developing cancer, is "rampaging" through his family, he says.
Kevin, an academic in Melbourne's east, was just a child when he lost his mother Eileen to cancer that she developed from the gene. She was 48.
His daughter, Kath, who inherited the gene and also developed cancer, died in 2019 at just 45.
But in the decades between the two women's deaths, a significant change has taken place: a shroud of silence was lifted.
And after the loss of Kath, Kevin and his family have shepherded a beautiful, enduring legacy into the world.
A death shrouded in silence
In 2015, Kath O'Connor was out for a birthday lunch with her family when she had intense stomach pain and had to leave.
It was the first sign of ovarian cancer — and of a new thread connecting her to her grandmother Eileen.
"When [Kath] got the diagnosis about the cancer [that] was associated with the BRCA1 gene … we then got my mother's death certificate and found out her cause of death was ovarian cancer," Kevin says.
This was a surprise to Kevin.
"I'd always believed my mother died of breast cancer," he says.
There's good reason for Kevin's confusion. He was only six when his mother died in 1950, and at the time his family considered it best that he be shielded from her illness and death.
"It wasn't talked about much at all," Kevin says.
He didn't know his mother had died when he and his brother were to sent to stay with their aunt Eve. Nor did he and his brother attend her funeral, "the judgement being that we were too small, too young", he says.
Kevin remembers his brother going shopping at a nearby cafe run by another aunt, where he found a notice on the door saying, 'Closed due to a bereavement in the family'.
His brother returned to report to Kevin and Eve that the shop was closed and to ask, "What's a bereavement?".
"I could actually take you to the room and the position of the chair; it's so staggeringly clear in my memory how [Eve] was sitting there and she was saying, 'I just have to tell you that mum has died'.
"So that's the first we knew," Kevin says.
"And then I can't remember what happened, but there was a sort of sense that life just went on."
'It's another world'
Kevin says there's a real difference in how his daughter's death has been met by their friends and family, compared with that of his mother's passing.
"The day of [Kath's] funeral, the funeral director put notepads all around the room where we had the celebration and just encouraged people to write notes to her [and] us," Kevin says.
"[There were] remarkable statements from people about her as a doctor, and how she had in a couple of cases saved their lives or given them a clearer pathway in life."
Kath's young nieces and nephews have very consciously been included in celebrating her life and grieving her death.
"We had a private family celebration at her house, and the coffin was there … and our three grandkids who were probably 15, 13 and 10 at the time were part of the celebration. One of them actually helped carry the coffin from the back verandah of the house into the car.
"So [it was] very different to a circumstance where I didn't even go to the church on the day of [my mother's] funeral."
Kevin says his son's family "have maintained the discussion of Kath".
"In fact, my daughter-in-law sets a place for Kath for our Christmas dinner. So it's another world, which is good."
A remarkable testament to life
After Kath's cancer diagnosis in 2015, she became intrigued about her grandmother's experience of the same illness.
Kath was a medical doctor, but all her life she'd been drawn towards writing.
She began to carefully pick apart the threads of this new connection to a woman she'd never met, in the form of a novel.
"Books and reading were [Kath's] first real love. She always said she'd wanted to be a writer," Kevin says.
"Words and expression and ideas were just sort of central to her life."
When she was well enough, Kath worked on the novel, taking breaks when she was ill. She finished the second draft just six months before she died.
After her death, her parents Kevin and Ann, Kath's partner Rachael, writer Inga Simpson and editors at publishing house Affirm Press, took Kath's near complete draft of her novel and carried it through to publication.
The resulting novel Inheritance has just been published.
Kevin says his daughter's voice leaps out from inside the pages of her book.
"You can hear her talking."
The publication of the novel has generated some mixed feelings from Kevin.
He explains that when Kath died, he had to shift the reflex to send her interesting things he'd read or heard. "I'd see things and think … I'll tell Kath about that," he says.
It was difficult to adjust to not being able to do that anymore, he says.
Now with her novel being reviewed in the media, he's experiencing it all over again.
"It's been happening now because we're thinking, god she would have loved to read these reviews.
"It's sort of hit us as something really concrete," he says.
He says a friend articulated it well to him: "You must be proud but sad".
"That's where we're at at the moment," Kevin says.
While it's just one thing in a big life, Kath's novel is a powerful legacy. Kevin is pleased to have it and "to hand it to some people, close friends, and say, I would just like you to have this as a memorial".
"Books are part of our life, books were part of her life, so ... it's a fantastic testament, and to think that rather than a gravestone in the graveyard somewhere, it'll be on a bookshelf.
"It's remarkable."
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