Source: Radio New Zealand
Paula Miles has “advanced notice” that her days are numbered.
“I’ve been shoulder tapped and said, ‘hey, you know, look out, this is coming sooner rather than later’.”
Miles was originally diagnosed with breast cancer 14 years ago, aged 56. She had some years cancer free before it returned in her ribs, spine, pelvis, femur and around her skull.
Paula Miles.
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“It’s an odd situation,” she says. “Cancer creeps along while it’s sort of suppressed” but there are, in her words “gold nuggets”.
“It’s a fairly interesting phase in your life because you’re approaching your end of life. But you’re living with this knowledge. Any day your treatment can stop working.
“After being told I had very little time left because of the spread of the tumours, I’ve then had five years. And they’ve been good years.”
When people have incurable cancer, one of the hardest things for them is to figure out where they fit on the “living spectrum”, explains Dr David Okonji.
The medical oncologist has seen hundreds of patients in his Wellington clinic. There are those, he says, who are rid of cancer physically but live with the fear of it returning.
Medical oncologist, Dr David Okonji.
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Then there are those who have incurable cancer, and their days are “significantly numbered”. When he tells them this news, the fear isn’t so much of dying itself, he says, but of how they will die.
“Those months that they’ve got to live, they can’t live and they’re… psychologically dead before the physically dead.”
And then there’s a group in the middle – of people who have a good prognosis but are living with cancer.
In this group, Okonji says he sees people “paralysed by the guilt of living”.
“That’s a hard thing to describe, but very easy to experience where you feel guilty for being alive. In a twisted self-loathing kind of way. You’re like ‘I don’t deserve this. I should be dead and I’m alive. I should be miserable and wallow in misery.’
This feeling can suck “the joy of life”, he says.
“They’ve spent so much of their time feeling guilty about being alive, that they missed out on the chance of living.”
Miles says what she appreciates is different to what it was when “life was set at a cracking pace”.
She likes to potter in her Golden Bay garden. Spending time with family brings joy – her 96-year-old dad, cousins, her daughter and son in their 30s and their children and her partner of 29 years, Jonathan.
“… Life is different now. I see a beautiful sunset and I have to get up and look at it. I love if I wake in the night, I like to go outside and put my bare feet on the grass and just feel the dew. Things like a tūī singing in a tree or we’ve got a little tomtit that comes into the garden and I get really excited over stuff like that… it sounds a bit sort of sweet, but it is.”
Okonji strives for people living with incurable metastatic cancer to reach the point of feeling the joy of living as Miles has, but they have to discover it themselves.
“… It’s kind of learning how to live moment to moment … and not being afraid that you will run out of time to completely live… The list will be complete if you’re calm and if you are enjoying it, otherwise it’s a chore.
“…. You can be alive, you could be living, and then there’s a joy of living. If you get the first two and you don’t get the third, then life becomes hard.”
Karen Barnett has found the joy in living. Diagnosed five years ago, Auckland-based Barnett passed the “best before date” she was given six months ago, and every day the 42-year-old lives, she becomes more defiant.
Since her diagnosis she has seen the Military Tattoo in Scotland, conquered the world’s longest zipline and been attacked by a police dog (at her request).
It might sound a bit bonkers, Karen Barnett laughs, but she wanted to see what it was like to get attacked by a police dog.
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“My plan is to die with cancer, not because of cancer,” Barnett says.
“Cancer has given me so much more than I can ever take away. It’s given me the meaning of life.”
She says her comfort zone continues to broaden and living with cancer has given her “a sense of freedom”.
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“I don’t ever have to worry about it coming back.”
She doesn’t stress out, she appreciates the small things.
“At the end of the day, we’re all going. I’m in the fortunate position where I have planned my funeral.”
Peter Ashby is constantly seeking joy. Around Christmas in 2021, Ashby had a call from the pharmacist saying his medicine was ready. That was how he learned he had blood cancer.
Peter Ashby.
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Now 67, he only retired from his day job as a plumber last year. Ashby has not slowed down, despite lots of skin cancer surgeries (“They chopped a bit of a hole in my head … at the moment I look like a bit of a scarecrow”.)
“I live life like normal … in fact I live it more than normal,” he says from his home where he lives with his partner of 18 years, Cherye.
“My life hasn’t changed at all, in fact I probably work harder … I’m a bit of a treasure hunter and I like doing things to the extreme.”
Ashby owns a forestry block in Murchison, in the Tasman region of the South Island, and regularly lies in chilly rivers looking for gold. He has recently been motorbiking to the Rainbow Station from Westport with a mate.
Peter Ashby on his motorbike in Black Forest, New Zealand.
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“You see, when I’m working, I’m not thinking about any of my pain… you can’t think about other shit when you’re riding a motorbike flat out, because you have to be concentrating on where you’re going and if you don’t concentrate, you’ll fall off.
“… I’ve had 66 years of really good life. So, I, I can’t. I just can’t complain.”
Doctor David Okonji says there’s power in a positive outlook like that which Paula and Karen and Peter live with.
“Sometimes I wonder whether the disease speeds up because of this sadness and this fear.”
He recalls a patient with colon cancer who, optimistically, had about six months to live.
The one thing the man wanted to do before he died was connect with his son, who he hadn’t seen for 20-odd years.
The man told him: “The one thing I’d love to do is just look into his eyes again. I don’t need to talk. if I could just have that … he doesn’t even have to say anything.”
Okonji suggested he give his son a call, but the man said he didn’t want him to think that he was only reaching out because he had cancer.
“I said ‘well, you don’t have to tell him you’ve got cancer. Just reach out and say ‘I miss you and I just wanted to say hello, just like that and be great if I could see you’. And he did that.
“About a week later, his son calls him. He’s in tears, he said. ‘You know what, dad? I thought that you never wanted to speak to me again, so I didn’t want to pick up the phone …I would love to see you’.”
The son jumped on a plane from his home in Australia, bound for Wellington to see his old man, bringing his son along.
“This grandson, he was just like his grandad… he was just a chip off the old block … so that brought the whole family together and it really reconciled them. And that guy lived an extra year.
“And this is how he died, he said, ‘let’s have dinner’. They had dinner and he looked at his sons. And he said, ‘you know what? I’ve got peace. I’m gonna go to bed now’, and he gave them all a hug and said goodnight.
“And they woke up the morning to have breakfast. He died in his sleep in peace. No pain.”
Okonji is more than a doctor to people who have cancer. He’s a therapist and a friend to many. He says we need to treat people, not cancer.
“… Some things are bigger than cancer in life I think.
“Being alive, living and then joyous living. It’s not greedy to want all three of them. Neither of these things mutually exclusive.”
– Published by EveningReport.nz and AsiaPacificReport.nz, see: MIL OSI in partnership with Radio New Zealand