Marie McInerney writes:
One of the highlights of this week’s inaugural World Indigenous Cancer Conference in Brisbane was to sit in on an intimate discussion between legendary singer Archie Roach and his doctor Associate Professor Lou Irving about Archie’s recovery from lung cancer.
The packed auditorium was hushed through the hour-long conversation on the aftermath of the 2011 diagnosis that hit Archie while he was grieving the very recent loss of his longtime musical and life partner, Ruby Hunter, who died aged just 54. They had been together for 38 years.
Their conversation conveyed a very respectful, two-way patient-doctor relationship and also reflected many of the issues that arose over the three days of the conference, including disparities in cancer incidence, treatment and outcomes for Indigenous people across the world.
Like the conference, their conversation also shone a light on some of the underlying issues behind the grim statistics, including the impact of trauma and racism on health, and the experience of Indigenous peoples in unequal access to and treatment in the health system, and the different expectations they can end up having as a result about health and care.
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‘It’s my healing’
The conversation had begun the night before when Archie performed at the conference gala dinner in front of Elders and delegates from Indigenous communities across the globe, representing Aboriginal and Torres Strait Islanders, Native Americans, Canadian First Nation, Inuit and Metis people, and a larger Maori contingent from New Zealand.
Elders nodded in recognition as Archie talked about being taken away from his family as a three-year-old, off the Framlingham mission on Gunditjmara country in southwest Victoria, of living on the streets for many years and his struggles with alcohol and the law.
You think you get through the trauma, he told them. And then comes cancer – and the added blow of a stroke.
“It makes you sick,” he said, before singing ‘Took the children away’, a song he said he never tires of performing: “It’s my healing. Everytime I sing it, it lets a little bit go.”
This story’s right, this story’s true
I would not tell lies to you
Like the promises they did not keep
And how they fenced us in like sheep.
Said to us come take our hand
Sent us off to mission land.
Taught us to read, to write and pray
Then they took the children away,
Took the children away,
The children away.
Snatched from their mother’s breast
Said this is for the best
Took them away.
As one delegate said: “He put the whole conference into song”.
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In conversation
The following day Archie and Lou Irving spoke on the conference’s main stage, in a session on ‘the patient and doctor conversation’. It sounded like they had had many such talks before.
As Irving led Archie in conversation, he asked how Archie had felt about seeking medical attention, what prejudice he had experienced in the health care system, the role of family and what techniques he uses to maintain meaning in life.
Irving admitted he didn’t know who Archie Roach was when they first met in a hospital consulting room in 2011. He only found out about him when he told friends he had met “this interesting Indigenous man”.
At that first meeting Archie was surrounded by doctors. Multidisciplinary care can deliver the best outcomes in health but Irving was “struck by the parallel worlds” that were present in that meeting. Archie is the only patient with cancer Irving has had who has not asked him, “how long have I got?” “You seem to live in the present, not future,” Irving told Archie.
“It took me a couple of weeks to realise there was more to Archie than the spot in his lung. We learn from our patients,” Irving said. “I’ve learnt an enormous amount.”
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Barriers to seeking health care
Irving began by asking what was the biggest barrier Archie faced in seeking medical care when he realised there was something wrong.
This was an issue that arose in many contexts and forums at the conference, with Indigenous people suffering from late diagnosis and treatment.
“The biggest barrier I think is that I’m an Aboriginal man….we’re just too tough for our own good,” Archie said, recalling the scene in Monty Python’s The Holy Grail where a knight fights blindly on – “it’s just a scratch!” – despite losing his arms and his legs.
“We suffer in silence and we don’t want to talk about what we’re going through.”
He had noticed that things weren’t quite right; he had troubles with breathing and walking.
“Still I chose to ignore it, (thought) it’ll be right, give it a couple of days, it’ll come good.”
Archie also shared with many other Indigenous people a mistrust of doctors, because of the experience of Aboriginal and Torres Strait Islander people in the past.
“I now realise there are good people out there, good doctors, who have worked with Aboriginal people and understand the problems we have with dealing with society in general,” he said. Irving, who he now counted as “a good friend”, was one of those, he said.
The cancer journey: a tough road
First, as Archie detailed in this story in The Saturday Paper, he had a stroke: he was in the Kimberley doing workshops for children, when he got up one morning, fell over and couldn’t move.
While he was recovering, his manager, Jill Shelton, got a feeling that something else was wrong.
The Saturday Paper quotes Shelton saying, “I don’t know what it was really. Being a smoker, and Archie was a heavy smoker, his breathing was always a bit dodgy. And it wasn’t [because of] coughing, it was just a feeling that something else might have been happening.”
Archie told the conference Shelton had played a big part in his survival, pushing “behind his back” for him to get treatment, insisting he undergo an x-ray, asking the hard questions that he tended not to.
Still, for a time, it was all too much. He didn’t think he had the strength for another big fight.
“I was listening to all this medical talk about the lungs, whether there would be radiotherapy, an operation etc, and I actually thought to myself, ‘maybe we’ll just leave it, just let it go’.
“I don’t know why. I’d come to a stage in my life where I thought: I went through a lot of trouble, heartache, pain. I was taken away as a kid, (went through) jails, institutions, alcoholism, homelessness.
“But I came good. I got through that, I dealt with it, got my life together and straightened out….I’m grateful for those years that I had, and I thought, ‘Maybe it’s time to go’.”
What kept him going was wanting to still be there for his children and grandchildren, and the news that he would still be able to sing after the operation.
But Archie admitted it’s been a tough road, with the removal of part of his lung leaving him with a significant disability.
You wouldn’t have known it when he sang. The raw power of his voice remains strong – singing uses muscles differently, he later explained.
But the diminished lung capacity exhausts him. It often keeps him limited to just a few songs, unable to walk even small distances, and at times strapped to an oxygen tank.
Has it been worth it, Irving asked?
Archie replied: “At first, I didn’t think so because I still have problems …I deal with it, I manage it as best I can. It’s far better than not being here that’s for sure…
“I actually love life now and any hesitation I had for the operation, for getting well, going through with the operation…it’s all gone.”
Exercise has helped. And Irving has taught him to take some time for himself, to take some ‘me time’.
“You hear about it, but it’s more than just a cliché, it’s actually true. You have to find time for yourself, give yourself some space, that’s important.”
Archie goes back when he can to Killarney, in rural Victoria, near the Framlingham mission, to sit outside, be part of nature.
“There’s this one beautiful bird, a blue wren. I see it all the time, a most beautiful bird…Things like that: nature, country, that keeps me (going).”
And, of course, music too: “Music’s always been an important part of my continual healing.”
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Prejudice in health care
Irving told a story about how Archie’s older sister had come to visit him in hospital, but he had been moved to another bed. Asking to be shown where he now was, the nurse led the sister to an Indian patient.
It was surely an honest mistake, Irving said, but told Archie he wanted to raise it “in the context of prejudice and not understanding people from different ethnicities: have you found that in hospitals now or in the past?”
Archie said he didn’t come across prejudice that much in hospital himself, but his concern was what happens to other Aboriginal people who don’t have his profile.
“I think if I’d just come in from the bush, would I get the same treatment, the royal treatment so to speak?
“I don’t think so. Sometimes I’m afforded the type of treatment I get because of my name, but my countrymen are not afforded the same respect.”
Sadly there are very recent concerns that even a high profile doesn’t assure proper treatment for Aboriginal people, with a complaint now lodged about the recent experience of Gurrumul Yunupingu, another renowned Indigenous musician, at the Royal Darwin Hospital.
As previously covered at Croakey, this case was much-discussed at the conference in the context of evidence about the role of institutional racism and implicit bias in the poorer treatment that Indigenous peoples experience in health care, around the world.
Speakers also highlighted these issues as a big factor in the reluctance of many to seek health care, a important point overlooked when mainstream health despairs of disengagement by “hard to reach” groups.
Archie said prejudice in health settings stops Indigenous people from seeking care. “Because if you make mistakes like that (confusing people because of their colour), if things like that occur in hospital, or we sense any sort of racism….we say ‘don’t worry about it’ and walk out. We pick up on those things.”
Irving invited the audience to contribute their thoughts about cultural and other factors that create barriers for health care workers in understanding Indigenous people or that leave Indigenous people feeling disempowered in the health care system, under pressure to “do what the system wants you to do.”
One delegate told of his work with Indigenous cancer survivors and how warm encounters with some medical teams had made a difference for them. It stood out from other medical processes, particularly where many specialists “divorce themselves” from the patient.
“For someone that’s going through the shock of being diagnosed, being away from family, in a foreign environment…people have said to me, just a little humanity, making conversation, will make a hell of a difference,” the delegate said.
A Royal Darwin Hospital health worker in the audience said the conversation highlighted the importance of having more Aboriginal Liaison Officers and Aboriginal health workers in the system, to play the “good advocate” role that Archie’s manager had seemed to play for him.
“Lots of patients in Darwin have English as their fourth language, they’re very shy, they’ve never been there before.” Often they can’t rely on family, as their relatives may feel “just as disempowered”.
She said: “We need a concerted effort to have Indigenous health workers in tertiary settings and interpreters in hospitals all the time, 24 hours in Emergency Departments, so when people come in, in distress, they can actually talk to someone about what’s going on.”
Asked by a Canadian First Nations delegate what was being done to teach culturally appropriate health practice in Australia, Irving responded that cultural awareness is now on the curriculum in every medical school: “but it is often dealt with in a very rational way.”
“The stories that Archie tells, highly emotionally intelligent stories…I think that’s a much better way to learn cultural awareness,” he said.
Gold and platinum rules in health care
Irving said he had been talking the previous night at the conference dinner about the pressures on health care workers that means they get to spend so little time with patients. It had reminded him of the concept of the ‘golden’ and ‘platinum’ rules.
“The ‘golden rule’ is what we all grew up with as health care workers: to treat people like we would like to be treated ourselves. The ‘platinum rule’ is to treat them how they would like to be treated.”
He said: “In order to practise the platinum rule, you need time to actually get to know a person, understand what their belief systems are, what their value systems are, and you need to do that before bad things happen because when bad things happen, it’s very hard to start from the beginning, to get to know the person (then).
“I mention this because I’ve spent time talking to Archie. It’s certainly enhanced my understanding.”
Irving talked about his own wake up call when Archie wasn’t recovering as well as doctors had hoped in the early post-operation days.
“His kidney function was not working quite as well as we had expected, we couldn’t understand it.”
“We only then found out that Archie only has one kidney, because he’d given the other one away.”
Irving said it was a mark of the nature of his patient, who is “actually the most generous person I’ve met”.
Archie downplayed his decision to donate: “It wasn’t a hard decision, it wasn’t brave, it was my brother. He was on dialysis and he needed a kidney. It’s a no brainer, you don’t think twice.”
But Irving said it also contained important lessons for health care professionals.
Normally, he said, someone who donates an organ is “very carefully followed” by the health system. Archie had not been.
“I should have been more careful and checked,” Irving said. “It could have had consequences.”
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Maintaining hope
Looking at the slide (above) that formed the backdrop to the discussion, Joe Tooma from the Australian Cervical Cancer Foundation pointed out how important the last words, ‘maintaining hope’, are in the whole cancer journey.
He asked Archie: what helps you to maintain hope, what have you seen that works for others?
Archie said he gets a lot of hope through his music, particularly when he goes out to schools and later gets letters from little kids “about how they feel about things that have happened to us as First Peoples”.
“A lot of little ones, they get it, they understand. It’s things like that.
“Living each day, each moment, is important for me. That’s the hope I have, that I don’t lose sight of that. My hope for a better place for my grandchildren to grow up in and working towards that in whatever capacity I can, that’s how I maintain hope.
“Life is beautiful, I love life. It hasn’t been an easy journey coming through cancer, recovering from the operation, recovering mentally, physically, spiritually, which were all conflicting with each other.
“But if I had to do it all again I certainly would, that’s for sure.”
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Final snippets from Archie in conversation
On living in the present: “I don’t like to project too much. Each moment is important. If you don’t take the time to notice, see things in the moment, you’ll miss it.”
On diet: “Diet is such a hard thing. I don’t even like the word. It should be just ‘eat a bit better than you usually do’.”
On Indigenous values and remedies: “I’m always grateful for what I’ve been taught by my old people, my Elders, about how to walk in this world.”
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• Marie McInerney is covering #WICC2016 for the Croakey Conference News Service. Track the conference coverage here.
