When a young hospital registrar turned “putty grey”, broadcaster Joanna Paul-Robie knew she was about to get some bad news.
Paul-Robie had gone into hospital to get checked out for what she suspected were kidney stones, only to get the devastating news she had terminal cancer.
“Nobody turns that colour on purpose. So, I said to her ‘just spit it out, whatever it is, tell me, I’ll deal with it’. And she said, ‘well, we’ve seen a very big shadow on your liver, you’ve basically got liver cancer’,” Paul-Robie told RNZ’s Afternoons.
Over the past four years, terminal ovarian cancer has been shoving Cora Torr, 61, towards life’s exit door. To offset this rude intruder, she’s enlisted the help of a death doula.
Wellbeing
Since her diagnosis four years ago, the former news presenter has been living with the disease, which is also in her bones and breast. She’s keeping it at bay with a regimen of drugs.
A recent Guardianarticle described this stage of living with terminal cancer that cannot be cured as “the long middle”.
When you recover, people celebrate. When you’re dying, they grieve. But when you’re just managing, the world doesn’t quite know what to do with you, she says.
After being told her treatment from that point would be palliative, Paul-Robie says the path “changed completely” for her.
“The mountains that I used to see in front of me, the maunga that I would climb professionally and pull myself up and do all of those good things, that was gone. All of those were gone. This was a path leading away from me, I could not see the end of it. And I think it trended downwards. So, that was how I found out I had cancer.”
Four years is the median life expectancy for someone with her type of cancer, she says.
“This is where I should be dropping dead, but I’m not.”
Her treatment has also left her looking outwardly relatively well, she says.
“When you look like I look… people say to me all the time, there are all these things. So little sayings like, ‘you give cancer a bad name’. That’s what I hear all the time.
“It’s a very odd thing to say, because where does that leave me? I’m sorry. I’m sorry I give cancer a bad name? I can’t apologise for being me. But all people say, ‘gosh, you’re looking amazing, Joanna’.”
People have little idea what’s really going on, she says.
“I physically clench my fingers and my toes, which are on fire most of the time. And I creak out of bed.”
If she were vocal about everything that hurt, it would bring the people around her and herself down, she says.
“So, I grit my teeth, I get up. I go for a walk with the dog. I do some yoga. I do what I can.”
Being in the middle is “a very difficult place to be”, she says.
“You’re not this person that everybody can go, you beat it, that’s fantastic, ring the bell. You’re saved, you’ve got through this.
“I’m not in remission… it’s not a survivor story and I’m not going to fall off the cliff tomorrow. I’m not skeletal and I still have my hair. So, I do not look like what most people think fourth stage metastatic cancer looks like.”
But she persists every day.
“I am being here. There are some days where, some moments where, I get very upset and I say to my husband, ‘I want to die. I want to die now because this is really hard’. But I know that my children, my friends, my bigger family, they don’t want that. They want me to stay here.
“And at the moment, staying here comes with a price. Yes I have drugs that keep me here, but all of that comes at a price.”
Paul-Robie began her career at RNZ. She was a newsreader for TV3 and a programmes and production manager at Māori Television.
She lives in constant pain and while there are “golden days”, must ration what energy she has.
“There are days when I think, ‘okay, I’m not going to be able to get out today. It’s not going to happen’.
“And so, I come to a new realisation and there’s a new reality for me. And that is that I have to take it easy. I need to have sleeps in the afternoon and naps in the afternoon. You know, I say no to things.”
Māori, she says, have a unique perspective on her being in this state of “middle”.
“My Aunty Mabel reminded me of this the other day. She says we’re standing on the marae ātea, that place between them and us. Now, for Māori people, we believe that there is a very thin veil. We’re standing in a transition place from the physical world of the living, te ao kikokiko, and there is the spiritual realm behind te arai, this veil. And the spiritual realm is te ao wairua. And that is where our tūpuna are.
“But that veil, I’m very aware of and when the time comes, I hope to be able to see my tūpuna waiting for me.”
Eventually, the drug that’s keeping her cancer at bay will cease to work, she says. When that time comes, she has chosen to not continue with treatment.
“I’ve seen people who are desperately clinging to life. There is a desperation amongst cancer people to desperately cling to life. I don’t feel like that.
“I feel very happy to live a good life at the moment. But when it becomes physically too much for me, I will opt out of doing that. And I will ask to be euthanised.”
– Published by EveningReport.nz and AsiaPacificReport.nz, see: MIL OSI in partnership with Radio New Zealand