“What do you do when people keep telling you that you look well, and you know you’re terminally ill?”
It was a question acclaimed folk musician John Thompson posed to palliative care nurse and friend Carolyn Mandersloot.
“Well, I’m not!” he says jovially and theatrically. (Once a performer, always a performer.) Even while dying, John was mischievous and self-deprecating.
Carolyn giggled her response: “Say thank you? Ask if they’ve seen your liver?”
This chat and many others were caught on tape. You see, John Thompson, the lawyer-turned-professional musician, wanted people to know what living and dying with cancer looked like. So, during the 2020 lockdown, after meeting at the Woodford Folk Festival, and three years after his terminal cancer diagnosis, he and Carolyn started recording a series of conversations.
As well as being the author of The Bottom Drawer Book: the after death action plan, I’m also a journo and audio producer so I whittled down hours of chatter and created a 29-minute podcast. You can listen here:
Where were we? Oh, the recorded convos! Carolyn is a 30-year registered nurse and now works as a community palliative care nurse in Gympie, Queensland. Passionate about getting people talking about the inevitable, she’s also a comedian, taking to the stage and sharing stories about the audacity of death and the people she’s met on the way.
And this is how she met John.
He’d scoff at me for saying this, but John was a bit of a big deal. He was larger than life and an extraordinary singer, songwriter, and musician. His folk band Cloudstreet recorded nine albums and travelled the world playing to sell-out shows.
“Before I was diagnosed, I was at Woodford Folk Festival where some friends lent me a little caravan. I was wiped out the whole festival. I thought it may have been because it was so dusty and I wasn’t getting enough oxygen or something like that,” John told nurse Carolyn.
“I’d get up and do gigs and then I’d just go back to bed. I’d sleep all day and all night. And looking back that was The Cancer with a capital T. At the time I had no idea.”
John was diagnosed with metastatic bowel cancer in 2017.
The private healthcare system: “I was f**king appalled”
After getting some ‘weird abdominal pain’, John went to a GP in Brisbane.
“He put me on to an arse doctor who was at the Wesley (Private Hospital).
“That was my first contact really with private doctors in many, many years. He did a micro-colonoscopy with whatever tubes he had to hand. And then wanted me to book in the following week.”
But John didn’t have private health insurance, so he asked the doctor what the cost of this was going to be.
“I’m not sure – I could get the girls to do up a quote”, the doctor replied.
Recounting this story to nurse Carolyn, John scoffed, “They deal so often with maliciously negotiated fees with private health insurers that they don’t know what they charge! I was just fucking appalled by that.
“When the doctor heard the bad news that I wasn’t going to pay him a lot of money, he referred me off to the public system.”
It turns out there was a bit of a wait in the public system. So much so that John and CloudStreet were able to complete a three-month tour of the UK. Upon his return, things took a turn.
“I was watching television, sitting on this very couch. I went to stand up and couldn’t. I thought, ‘oh, okay, call an ambulance’. Obviously, my mind hadn’t totally been taken over by toxic masculinity then. The paramedics suggested they take me to the hospital.
“Good! No, leave me here with this inexplicable pain!” John’s wry humour was still well and truly intact.
Once at the hospital, thanks to major surgery, a bowel resection, and a stoma, John lost 14 kilos in 12 days.
“They found that a tumour in my bowel had burst forth to freedom and I had bowel contents in my torso. They used about two-and-a-half litres of saline flushing me out.”
Subsequent scans revealed about a dozen tumours scattered across both sides of John’s liver.
“The significance of having tumours on both sides means that it’s inoperable,” said John frankly.
Shock and conversations with doctors
After days of telling John and wife Nicole Murray that they didn’t think it was cancer, medicos changed their tune.
“It was the first time that anyone had talked to us about it being cancer! Admittedly, I can’t imagine what else would prompt the removal of 18cm of bowel. The delivery of that terminal diagnosis was pretty shocking,” said Nicole.
The discussion of John’s terminal diagnosis between John and Nicole and a young hospital registrar was less than ideal and offers a great example of the giant gap in the education of medical students.
John and Nicole were in the same room, listening to the same doctor, but they heard different things. John heard an 18-month prognosis and Nicole heard three years.
Nurse Carolyn says that kind of confusion is pretty common.
“Once people hear the word cancer, they don’t hear much else. They just think “I’m going to die!!!!’. Looking back, their experience was less than ideal,” said Carolyn.
John agreed. “The thing that struck me about the registrar was that I thought it was coming close to me needing to comfort him, which I was a bit shitty about. I mean, fall to bits in your own time. Now is not the time!”
Something that did work well for John was what came after his diagnosis. He was connected with the professionals who would help him on his way. John had cancer-related professionals available at his fingertips.
Nurse Carolyn said studies have shown that people who are introduced to palliative care earlier in their diagnosis have better outcomes at ‘the end’.
“Because you’re linked into palliative care, you’re often having the conversations and talking about the things that you might bump up against down the track. So, especially with your family, you have already covered those hard conversations at a time when you’re quite well”, she said.
Treatment and consent
John started chemotherapy shortly after his diagnosis. By the time he started having these recorded conversations, he’d gone through a couple of rounds of chemo and had started on immunotherapy.
“Looking back, I can’t quite say where the consent point was,” he recounted. “And that’s happened quite a lot with my treatment. You’re sort of consenting to it in the sense that they’re making you aware of what they’re about to do.”
And as for John’s prognosis…
“There’s never been any suggestion that I could come out the other side of this.”
Nurse Carolyn admitted that palliative chemo can be ‘tricky’.
“I think they need to give the individual some power around that, and choice. It’s the quality and quantity versus how well you’re doing.”
John replied, “Overall, I was miserable. What’s the point of that?
Getting prepared – Advanced health planning
An important part of dealing with a terminal diagnosis is the paperwork. That is, making sure someone speaks for you when you can no longer speak for yourself.
A statement of choices can be used to record views, wishes and preferences for health care. Its purpose is to guide or inform those who need to make health care decisions for a person who is unable to make those decisions for themselves.
“It’s about making sure that they know what you want and how you’d like to be treated or not to be treated,” said nurse Carolyn.
“It’s often a very simple way of having those initial conversations with someone. It gets down to the nitty-gritty and the practical stuff. So, ‘you’re going to die: how do you want that to be? What’s important to you? Where do you want to be’?”
“It’s important for people with a palliative condition to fill in so a whole bunch of stuff doesn’t get done to you to prolong things,” said nurse Carolyn.
A more detailed document is the very important Advance Care Plan Directive. This is where John’s legal knowledge was helpful.
“An Advanced Health Directive is much more specific in that it talks about: do you want artificial respiration? Do you want to be revived if you’re unconscious?
“Now, I don’t mind talking about this stuff, but I was reluctant to say I don’t want artificial nutrition or artificial hydration because, I thought ‘that sounds awful’.
“That was until I had a few days where I didn’t eat or drink. I then saw that it was a perfectly normal thing,” John admitted.
“Yeah – it’s a natural way of the body shutting down,” comforted Carolyn.
The grieving started long before John died, something he wasn’t comfortable with.
It was this final recorded conversation in which John’s walls started to come down. His wry humour and frankness make way for reflection.
He found it confronting when people in his outer circle openly grieved in front of him.
“How do you steer people away from someone visiting you and they seem intent on grieving in front of you?” he asked nurse Carolyn.
“My natural inclination is to want to look after them. I don’t have much concern about not being able to manage it, I just don’t want to. Of all the things to have to manage about the situation, how other people feel about it is not near the top of my list,” he said.
And when it came to his inner circle…
“I find it hard to manage other people’s grief. At some level, I think it’s my fault… In some way, I feel like I’m to blame for it.”
Two weeks after this final chat, John Joseph Thompson died peacefully at home; his sense of humour in tact. He was 56.
His final post on social media said that he was heading into the home stretch, surrounded by love and with a full heart.
Woodford Folk Festival appearance – 27 Dec 2023
Thank you, Woodford! John’s words were the focus of a standing-room-only presentation at the 2023/24 Woodford Folk Festival. Some of the big crowd had known John, but many didn’t – a clear indication that people want to learn more about death and dying and are open to these sorts of important conversations. There were truths, frankness, lots of laughs, and a few tears. John wanted his story heard and that’s what we did. WITH GUSTO.
Here’s a link to a special tribute performance at the 22/23 festival, again revealing the respect and love the folk fraternity holds for John Thompson.
Thank you, John, for sharing your real and honest story.