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Full transcript below

In this podcast, Nick and Paul discuss:

Paul's cancer journey and the odds of his survival
The development of immunotherapy and other revolutionary cancer treatments
Cancer research and the medical establishment
The examples and books of Jimmy Stynes, Lance Armstrong, and Christopher Hitchens
Reflections on mortality, death, and existential meaning and purpose
The impact of Paul’s cancer journey on his relationships
The 2016 International Cancer Conference in Brazil, and conversations with Dr. David Speakman, Chief Medical Officer of the Peter MacCallum Cancer Centre
Reframing one’s priorities after living with cancer

Dr Paul Monk is a poet, polymath and highly regarded Australian public intellectual. He has written an extraordinary range of books, from Sonnets to a Promiscuous Beauty (which resides in former Prime Minister Malcolm Turnbull’s library), to reflective essays on the riches of Western civilization in The West in a Nutshell, to a prescient 2005 treatise on the rise of China in Thunder from the Silent Zone: Rethinking China.

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Dr. Paul Monk on Overcoming Cancer

00:00 Paul: Cancer is alive. It's a normal cell, mutated and changed and it continues to change in the body. Unfortunately, a cancer drug does not mutate or change. A drug may poison or starve the cancer for a time, but whatever cancer cells remain will continue to mutate. It only takes one. The drug dances with cancer, but cancer dances away.

00:25 As a result, these types of drugs are unlikely to ever truly cure cancer, but we have killers in our bodies and scouts and soldiers, a dynamic network of cells more nimble than any cancer. This is our immune system, a leading defence as old as life itself. This system mutates, it adapts, it learns and remembers and matches an innovating disease step for step. It's our best tool to cure cancer and we have finally discovered how to unleash it. This is the breakthrough.

00:58 Nick: That was Dr. Paul Monk reading the opening paragraph from The Breakthrough: Immunotherapy and the Race to Cure Cancer by Charles Grayber. Paul, you had cancer for 13 years, but it didn't kill you. Can you talk to us a bit about your cancer journey and the odds of your survival?

01:14 Paul: Yes. Thanks, Nick. It was a remarkable journey and normally when you go on a journey, you plan where you're going to go and why you're going to go and how you're going to get from place to place and where you're going to stay. This was not a journey of that nature of course because when you're diagnosed with cancer, there are certain probabilities about how it might go and the longer you have it, the more ominous those probabilities are, but it's very difficult to plan that as a journey and in a lot of ways, you have to make it up as you go along.

01:45 In my particular case, it became highly unusual because I was diagnosed in 2004 with melanoma which had been found in my right leg and they cut that out quickly and the surgeon assured me with a big smile that he thought, "We've cut it off at the pass," he said. "We've got it in time so you're going to be okay."

02:07 Well, that turned out to be mistaken. It recurred. It recurred in the leg and they cut out another tumour and then it came back again and then again and then again and after several years and six occurrences, that same surgeon who had done all the operations said to me, looking grim faced now, "Look, if you were a breast cancer patient and this was your sixth occurrence, I'd be saying you might want to cash in your insurance and have a good holiday because it's not going to get any better from here."

02:41 Contrary to his expectation and certainly contrary to mine, that was far from being the case. I then had recurrences seven, eight, nine, ten, eleven, twelve, thirteen, fourteen and fifteen without it metastasising, without it getting out of the leg. So, endless operations over years and then just at the point where both of us thought it's not going to metastasize, it made me a statistical freak because there are very few cases - and we can come back to this - where it doesn't metastasise if it's recurred at all, much less six times, to say nothing of 15 times, it metastasises and it will kill people mostly after that.

03:26 In very few cases - very few - and let me spell that out because when I was told by David after the ninth occurrence (David being the surgeon) that he was now more relaxed rather than more agitated because he said, "We get a small number of patients who get recurrent disease and live for years and years without it ever metastasising and it's beginning to look like you're one of them." And I said to him at that point, this was at least 10 years ago now, "So, when you say you get a few cases, what are you talking about - 5% or 10% of patients?" He said, "Oh, no, no. No, I could think of maybe three such cases out of the many hundreds we currently have in our books." "Ah," I said. "So, I'm a statistical freak. This is a very marginal phenomenon." He said, "Exactly so." I said, "Well, that's fascinating. Okay, very interesting. Great, so let's proceed."

04:21 And then just when we thought that's it and therefore it was not a life-threatening problem, it did metastasize and so he became a bit grim again about this but having metastasised it didn't go wild. Where normally it would get into vital organs and become distinctly life threatening, what happened is that there were only a couple of metastatic tumours. There were three in all in fact, and without drug treatment - and we'll come back to those also - two of those spontaneously disappeared with no treatment at all.

04:55 This again was anomalous, and David said to me at that point, "This is honestly good news, but I have no idea why that happened. We have no medical explanation for it." It took a while to stamp out the last tumour but there have been no new tumours and I have now been in complete remission, tumour free, for a number of years. So, it's been an extraordinary journey and had all sorts of implications and ramifications along the way and it will be really interesting to talk about those.

05:19 Nick: I look forward to it. People often write and talk about being cancer survivors. Is that how you feel?

05:26 Paul: Well, yes, in a sense I am of course a cancer survivor in the sense that I had cancer. Indeed, I had it for 13 years and yet here I am, I've survived, but there's something slightly anomalous about this because if you'd asked me before I ever incurred the cancer what I meant by 'cancer survivor', I would have had this impression of somebody who was at death's door, you know, who really had a serious metastatic cancer and was seriously ill and somehow, they pulled through.

05:51 I was actually never in that position. I had tumours recurring as I just recounted but I was never desperately ill. I was never in any imminent danger of dying and so I hesitated saying I'm a cancer survivor, if only because it suggests that my drama, my experience, was as grave as that of many people who are far more seriously ill than I ever became.

06:19 However, while all of that was going on I read a number of books by people who really had, had serious cancer and survived and I also read books that had been published posthumously about people who had tried very hard to become cancer survivors and who had failed, who had died, and that's all worth reflecting on.

06:42 So, rather than - in a strange kind of way if I may put it this was - rather than calling myself a 'cancer survivor' I see myself as somebody who was extraordinarily fortunate in my experience of cancer in a number of ways and not the least of those is because it moved so slowly in my body, by the time it metastasised and still did so very slowly, the best drugs that we have available had been invented and had been put on the pharmaceutical benefits scheme in Australia so they were available to me.

07:17 Had the cancer moved more aggressively in a way that population data suggested would do early on, I might well have died before they were available, and I know of cases of people of whom that was true and it's worth referring to one of them in particular at this stage because he'd died of melanoma not long before I got it. In fact, it might have been after I'd first got it and his name is Jimmy Stynes. If you live in Melbourne or even in Australia, you might well have known Jimmy Stynes. Indeed, if you live in Ireland, you might have heard of him because he was a very good Australian rules footballer. He was a Melbourne footballer. He was a decorated footballer and after he retired from football, he became a youth leader and a community leader of considerable stature and he had a lovely young wife and young kids, and he got melanoma and he did everything he could to fight it off and he had everything to live for, but it killed him.

08:17 It's a very moving story and he wrote a book while he was ill which was published after he died which tells his story and that's a very different story to mine, and I've said to many people when they congratulate me on surviving cancer, I say, "Well, look first of all, it's not a matter of congratulations. I was just very fortunate." It wasn't anything I did that led to this experience and I didn't have anything going for me that Jimmy Stynes didn't. If anything, I had less going for me. I mean, there he was successful, a public figure, fitter than I've ever been, happily married, beautiful wife, young kids, lots of friends and yet it took him down.

09:03 He tried unorthodox medical procedures which I never bothered with. Not least because I didn't need to, I was never, as I said, in serious danger whereas he was, but he did things I wouldn't even bother with if I was desperately ill quite frankly and his wife said subsequently, "In retrospect, while I understood why he experimented, I wish that he'd spent more time with me and the kids instead of doing these things because they didn't work and they chewed up a lot of time," but it was very interesting reading his story back then.

09:35 Nick: So, when you first told that you had melanoma and it was on the brink of metastasis, how did you react emotionally?

09:42 Paul: With extraordinary calm. I remember very clearly discovering that I had a birthmark on my right knee. More precisely, I had known for decades that I had a birthmark on my right knee, but it had gone black and without any particular panic, I remember looking at this and a little voice as we say in the back of my head said, "Didn't I read somewhere years ago that birthmarks can go cancerous? I better get this checked out."

10:07 So, I went to my GP and he, when I asked him about it, quite calmly said, "That's awful. That's got to come off." He knew exactly what it was straight away. So, he gave me a local anaesthetic and cut part of it out and sent it off for a biopsy and he called me back a couple of days later. In a very grave voice he said to me, "You've got to come and see me straight away. This is very serious."

10:30 I went to see him, and he was pale. He was upset because he knew where this could go and indeed probably would go. That would have been his estimate. So, he said to me, "You have a stage three melanoma and that means it's right on the brink of breaking out, metastasising, and we have to get you into hospital as soon as possible."

10:51 As I left his clinic, he looked at me and he said, "You must be feeling rather panicked," and I said, "No, not at all. We'll do what we need to do, and we'll cross each bridge as we get to it." That was my mood, quite authentically.

11:05 We had the operation and then when the first recurrence occurred, I remember thinking, "Well, my father died of cancer back in the 1990s, maybe this is going to kill me," but I didn't at that point and, to the best of my recollection, at any point feel frightened or depressed or angry as many people become, and in a sense you could say that's easy for me to declare given that I survived and never got desperately ill but, never the less, you ask, "What was my mood?" Well, that was my mood. I was calm and this was reflected in the dialogue I had of what became many years with my surgeons and specialists.

11:46 Nick: Could you step us through briefly how your case actually played out following that initial diagnosis?

11:52 Paul: Yeah. Well, I covered a bit of that in my answer to the first question but let me add some juicy anecdotes which I didn't share in that first instance. So, after these multiple recurrences and learning that I was a statistical freak, you might say way out on the right-hand side of the skewed curve of cancer, I developed a cluster of tumours in my right leg. So, this was what would become the 15th operation. This is well into the story and they had to put me under general anaesthetic and remove 14 tumours from my thigh and they couldn't do a suture, they had to do a skin flap, and I was told that you've got be really careful with the skin flap because if it becomes unglued, you've got a real mess on your hands, and I was on crutches for about three months.

12:42 So, this was the single most serious actual operation I've had and so I said to my surgeon, "Look, okay this would appear to suggest that the cancer finally is marshalling it's forces and getting serious. It's preparing for what Douglas Haig in the first world war would have called a 'big push', a battle of the song," and I said, "So, if you think it's going to metastasise sometime soon, you need to tell me because I'll need to reorganise my life to deal with this," and he said to me, "Look, I would certainly tell you if I thought that was about to happen but frankly I don't think it's going to happen at all. I think if it was going to metastasise, it would have done that years ago."

13:18 Within six months, it metastasised, and I should add - and this is perfectly true although it sounds humorous because, in a way, it was humorous - when it metastasised, I said to him, "Well, you told me it wouldn’t, and it has." He said, "Look, every time I make a prognosis, I get it wrong with you." He said, "And you've got to stop this, it makes us all look silly."

13:42 Now, he's actually very good at what he does. He's the chief medical officer at Peter MacCallum Cancer Centre and he's a very good surgeon and very highly regarded and so it was in fact anomalous that his team's prognosis about me were consistently wrong because the cancer was just behaving in my body in a highly anomalous way and that continued.

14:05 So, it's metastasised and I think I remarked earlier. So, there were three tumours that hadn't gone feral, that hadn't got out of control, but what he said to me at this point - and this is the next anecdote which is really one of my favourites I've got to say. He said, "Well, surgery won't so to speak cut it any more. We need to resort to drugs and so I'm going to introduce you to our top oncologist."

14:28 So, I met the oncologist, and he explained the drug options and he said, "Until very recently, chemotherapy would have been next but you're fortunate, we have a new drug now," and this was not yet, let me say parenthetically, immunotherapy - we'll come to that later. This was an intermediate kind of drug which was called a 'genetic pathway inhibitor'. It was more interesting, more sophisticated and more benign than chemo. It wasn't yet immunotherapy.

14:57 And he explained this drug to me and then wanted me to sign a form to say, "Yes, I'll take it," but I pulled him up and I said, "Alright, what you've explained to me if I've understood correctly is that this is the best thing in your armoury. However, I've got to say to you that it only works in 20% of cases. When it works, it only works for an immediate period of nine months and then there tends to be a relapse and the whole time you're on it, even when it's working, you will feel a bit shitty like you've got the flu or something."

15:25 So, I said to him, "Well, in all circumstances then I'm not sure that it makes any sense to take your drug because I'm feeling perfectly fine. We know that new tumours are there but they're not causing any pain. There's very few of them. They’re not in vital organs. We know that cancer has always moved very slowly in my body. There's no reason to assume that's going to be different in the immediate future and I have a book to finish. So, I would sooner have 12 good months and finish that book and if the cancer progresses, then roll the dice with this drug, rather than take it, find that I can't find the energy to write the book and the drug doesn't work anyway and the 80% chance is it that it won't."

16:00 Well, he was quite taken aback by this because this is not what patients normally do, and this is a crucial part of my story. I was always asking questions and calmly so, and he said to me, "But if you don't take the drug, the cancer will progress." I said, "Let me take you back to what you said about the median period for which it work when it works is nine months." I said, "Did you by any chance ever read a paper by Stephen J. Gould called The Median Isn't the Message?" He said, "No, I haven't. I said, "Do you know who Stephen J. Gould was?" "No, I don't," he said. I said, "Well, Stephen J. Gould was a distinguished evolutionary biologist and in 1982 he was diagnosed with melophilia which is, you'll be well aware, a highly lethal cancer, moves very rapidly and is deadly."

16:47 Now, I said he was informed that the median period of survival from diagnosis of melophilia is eight months and as almost anybody would, he reacted initially with shock thinking, "Oh my god, I've got eight months to live." But he was a scientist, a very good one, and he went away, and he thought, "Wait a minute, the median period of surviving is eight months." "Wait a minute," he said. "So, that's a statistical artifact and this is not a bell curve. This is going to be a curve that's very scrunched up on the left-hand side," because a lot of people are not statistical averages. They're real people and they're diagnosed late. They're diagnosed old. They're diagnosed with co-morbidities. They used to be heavy smokers, heavy drinkers, whatever. That's why they die quickly, and the median becomes eight months because a lot of those people die early, but on the right-hand side of the view it trails off into a long trail.

17:34 Now, I'm none of those things. I'm young, I'm fit, I've got interesting work. I've got a good family. I've never been a smoker, never been a heavy drinker. I don't have co-morbidities. Eight months is irrelevant to me. I'm way out on the right-hand side, forget eight months.

17:49 And as it happens - and I repeated all this to the oncologist - he lived another 20 years and he did not die of melophilia, and he said, "Look, that's all very interesting but I've got three more patients queued up. I need you to sign the form and take the drug."

18:03 I said, "You're not hearing me. Have you ever read a book called the Patient from Hell by Stephen Schneider?" and he said, "No, I haven't." I said, "Do you know who Stephen Schneider was?" "No, I don't." "Well," I said. "He was a distinguished climate scientist, and he was diagnosed 20 years ago now with aggressive lymphoma." He proceeded to ask his doctors and nurses every kind of question about what was the nature of their evidence, how did they reach their conclusions, why they were suggesting this kind of treatment rather than some other kind of treatment, what were the alternatives, why this amount of treatment or drug rather than less, rather than more, rather than different, and it drove them nuts because they just wanted to administer their treatments and have their patients accept it. He didn't.

18:42 Now, the interesting thing is that his questions were actually intelligent questions. As a result of his pestering them, not only did they change his treatment for the better and it worked, he survived, but they changed some of their standing protocols.

18:57 Now, the oncologist response has always intrigued me. He said, "Oh, look, I don't read things like that, I just treat people," and I was fascinated because I thought for heaven's sake, this is like some bureaucrat saying, as many doubtless would, "I don't read stuff on making public policy, I just do it." And I said, "Well, that's fine, but I'm the patient here and I am the patient from hell, and I don't for the moment see any point in taking the drug, thank you very much."

19:25 Nick: You never would have guessed back in 2004 that everything would unfold as it did over the following 13 years or so. Did you become preoccupied with cancer research and how to survive, changing your diet and things of that nature?

19:36 Paul: Not particularly. I mean, it does seem that a great many people, either off their own bat or urged by friends or unorthodox gurus and so forth, try all sorts of things. I mentioned Jimmy Stynes and he tried some distinctly unorthodox things. That was never my inclination.

19:55 I felt two things at the start and maintained this attitude throughout. First of all, cancer is perfectly real. Disease is perfectly real. Mortality is perfectly real. We all die of something and I would say to the surgeons if this is what is going to kill me, I'll just look it right in the eye as I go down, but I'm not giving up. However, I'm not desperate. I've got things to do. My life is meaningful, and I don't want to become preoccupied by cancer. I don't want it to take over what life I've got left, especially if it can't be stopped and it's going to kill me. I want to spend what time I have in my key pursuits and that's what I did.

20:31 So, I did read some books about cancer. I did make sure I was reasonably informed about the nature of melanoma. I read, as I said, books by people like Jimmy Stynes. Christopher Hitchens was another one who died of cancer. Lance Armstrong wrote a book about his experience of cancer which we might come back to, but I primarily concentrated on the things that I was already committed to and I didn't change my diet. I didn't change my exercise routine, except that as time went on I wasn't able to get as much exercise because I was forever going into hospital for leg operations and then I was in rehab and I'd try again, but it did severely undermine my physical fitness and my regime, but as an index of how I did in fact live and what my priorities were, I got to the point where I was writing a new book on very different subjects every year. That's what I was concentrating on.

21:25 Nick: Existentially...

21:27 Paul: Existentially. I was committed to writing what was in me to write while I could, rather than saying, "I've got to focus entirely on cancer otherwise it might kill me," because, yeah, it might kill me, but something is going to kill me. It's either this or something else, let's not get obsessed with it.

21:43 Nick: Did you read other literatures and books by other cancer survivors which took on a significance for you during your recovery and cancer journey?

21:50 Paul: Yeah. The only one I've mentioned really so far is Jimmy Stynes' book and it was significant but as a kind of counter example, I thought well there it is. There's a guy who had everything in his favour, more so than I do, and he tried everything, and it didn't work. So, why would you do what he did? It's not an example to follow, to be honest. In terms of his character, he was a wonderful human being, sure, but in terms of his approach to cancer, I don't think so.

22:15 Christopher Hitchens wrote a very different book, and he was a very different person to Jimmy, and he'd never concentrated on fitness and he wasn't an athlete. He was a heavy drinker; he was a heavy smoker. He got throat cancer and one of his preoccupations in writing his memoir, which was also published posthumously...

22:33 Nick: It's called On Mortality or something...

22:34 Paul: Yeah, his book - Christopher Hitchens' book is called Mortality and it's a slim book and it's an interesting book because his main preoccupation seems to have been, as he was dying, to make very clear to religious believers or believers in an afterlife that the fact that he was dying was not turning him into a religious believer and he had no belief at all in an afterlife. He was completely convinced that he was mortal, that he was dying and that's just the way things are, and it wasn't shaking up his philosophical opinions. So, that was interesting and a more serious book in a way than Stynes, but not exactly inspiring. It was just stoical, and some people would say stubborn.

23:21 Nick: It's a very emotional and moving book in many ways because we see the one's vital intellect and writing ability of Christopher Hitchens fade away before our very eyes as the entries become less and less coherent towards the final entries and toward the end of the book as Christopher approaches his death and his faculties fade.

23:44 Paul: Yes, as you can imagine will happen when you're writing a book as you're dying and you are dying and that's reflected in your capacities towards the end, and I should add that I read that relatively early and I wasn't, as I said earlier, critically ill and so I thought of the possibility of writing a book myself about the experience of the cancer and perhaps of dying, but first of all I had other things to write and secondly I wasn't really dying. I was just having the inconvenience of an operation every six months or so and so I never did write a book like that. If I write a memoir kind of book in the future, it's unlikely to be one about the experience of dying from cancer. It's more likely to be a traditional memoir about my education and travel.

24:32 Nick: You mentioned before that Lance Armstrong's book, It's Not About the Bike, was an inspiration alongside Jimmy Stynes and Christopher Hitchens' works. Was this effected at all by the revelation that he'd been a drug cheat in his seven Tour de France victories?

24:45 Paul: Well, it was and that's reflected in the fact that when we were preparing for this podcast, I went looking for my copy of that book and discovered that evidently, I'd got rid of it and I would say I probably got rid of it because of that discovery, that I thought, "Oh, well, so much for all the lyrical things he says about what inspires him and so forth because he was a fraud."

25:06 Nevertheless, the striking thing about his book which I did read initially before that revelation came out was that he said, "You might think that having won the Tour de France seven times would be the glory of my life and the thing I'd celebrate most, but in fact what I find the greatest meaning in is being a cancer survivor," and he was a speaker on the circuit about that.

25:26 Nick: He had prostate cancer.

25:27 Paul: Prostate cancer and it got serious. It got far more serious a life-threatening illness than mine ever did, but of course the reason perhaps I got rid of the book is because you say, "Well, Lance, it's all very well to say that it means more to you, surviving cancer, than winning the Tour de France because you won the Tour de France fraudulently. You shouldn't have won seven medals. So, that's probably why they don't mean as much to you as they might otherwise do.

25:52 Paul: Well, that's true. That is true, but he of course defensively made that point several times. "I was starting to do it when everybody else was doing it." Nevertheless, he had done it and so it by common agreement took the gloss off his achievement.

26:10 Nick: When did your doctors realise that you were an unusual case and that you weren't conforming to population data?

26:17 Paul: That was something that emerged you could say by stages but manifestly as I remarked early, at the point where I'd had five or six tumours the surgeon calculated - the team calculated - that I was in very serious trouble because all the population data would indicate that if you get that far, you're going to go down and it's going to be rear guard action from that point. Hence, he said, take a holiday because it's not going to get any better from here.

26:44 Nick: Cash out your insurance.

26:46 Paul: Yeah, and my response at that point was, "Look, thanks for being candid with me but I've never lived in La-la-land. I don't need a jolly. If you think my number is just about up, I've got a book I'm writing, I'm going to finish that book." That book was the West in a Nutshell, one of my favourite books. My wife, Claudia, still says she thinks it's the best book I've written. She loves it, and I finished writing that book and it was published and there hadn't been any recurrences. There weren't for 18 months.

27:13 So, that threw them a bit and so they thought, "Well, this is not what we expected." Then it began again but because it began again and still in the leg, as I remarked earlier, the surgeon said to me after several more, "I'm beginning to think you're one of those very rare cases," and subsequent to that the cumulative evidence over a number of years was that looked certainly to be true because he said that at number nine and then we had ten, eleven, twelve, thirteen, fourteen, fifteen and still in the leg. So, that's really when they drew that conclusion, but of course then it was upended to some extent because it did metastasise.

27:45 Nick: Right, and how did your cancer experience impact upon your relationship with your partner, Claudia, with whom you'd fallen in love with some months before your initial diagnosis in 2004?

27:57 Paul: Yes, that's a poignant and very personal part of the story obviously and the great irony from her point of view especially was that we met in basically June 2004 and I was diagnosed with the melanoma in November 2004, and this is at a point where she'd fallen in love with me, she wanted to marry me and suddenly I'm dying of melanoma and there was no way of knowing whether this was going to become life-threatening or a passing incident, but she made clear to me that while it could turn very serious and while she at that point didn't have anything like Australian citizenship or even permanent residency, she wanted to stay, regardless of the prognosis.

28:43 And I've got to say, while I was very impressed by her as a person before that, that really impressed upon me the calibre of person she was, the character that she had, because it would have been entirely understandable and I'd have to say entirely forgivable if a person in her position had thought to herself, "I can't handle this, I've got to get out of here because I'm living with a guy, I'm in love with him, but he could die and I don't have an income. I'm in a foreign country, I don't have a career path. This is a disaster."

29:20 Instead, she says to me very deliberately and seriously, "I want to stay regardless of the prognosis," and it was in that context that we actually got married and then it recurred several times, and I remember a conversation with her still fairly early on where I said, "Well, you know, maybe this will kill me," but I said, "many people I greatly admire died young and it's kind of romantic."

29:42 She said to me almost angrily, "It would not be romantic, it would be terrible." So, there's a stark difference to our reactions to the situation and I wasn't being flippant. I meant what I'd said. As I said earlier, at no point did I feel angry or panic stricken or think that "This is not fair, I shouldn't be ill, I'm not going to die." I thought, "I might die, everybody dies." That was always my attitude and paradoxically it could be that because I took that pragmatic attitude, there was less stress in my system, and it was actually better able to cope with the cancer. That is an irony.

30:18 Nick: Incredible.

30:17 Paul: But anyway, to sum up, the long haul was that Claudia was just a pillar of strength. She really wanted me to live. She showed that she loved me. She was a great companion and I'm sure that contributed and in fact let me say, later when it did metastasise and I was on anti-cancer drugs, I would get very tired and I found myself thinking that if I was to die, my greatest concern would be for her and that showed the extent to which we'd become intimate, and she really mattered to me.

30:53 Nick: Yeah, and it must have been so wonderful to have had something as life affirming as love while battling such an insidious disease whose existence is predicated upon your destruction, but when the cancer finally did metastasise did you get a sinking feeling and think, "this is the beginning of the end," or anything like that?

31:11 Paul: I don't recall having a sinking feeling. As I said, it may sound a little unreal but what happened was profoundly ironical. Before I had the scan that showed the metastasis, I had actually travelled to the Mediterranean and principally to Spain and the Canary Islands on field work for a novel that I was writing. Now, the novel was inspired by my relationship with Claudia and the key characters in it, Fenimore and Margarita, met in Spain and she was based in the Canary Islands and was a musicologist in the novel.

31:46 But in the novel, he and she formed a relationship and they travelled together for years and they do all the things that in fact Claudia and I have done in recent years, but he comes back to his residence at a place called the Ends of the Earth and discovers that he has rampant metastatic cancer. Now, I conceived that scenario and drafted it in the Mediterranean in early 2013 and I came back to Australia feeling perfectly well, had what I thought would be a routine scan and I'm told, "You've got metastasis," and I thought, "Now, that is ironical because I had thought that I was clear of it or that it would never metastasise," and I'd written a scenario which was fictional and then suddenly, I’m in the same situation, except that it wasn’t rampant. In the story, he's really, really riddled with it and he does die. Whereas in this present case, that didn't happen as you know.

32:40 Nick: So, talk to us about those conversations you had with your oncologist and cancer surgeon, David Speakman, once it did metastasise.

32:49 Paul: Yes, well the single most significant conversation - really though there were several and we might touch on them successively - but the first really pivotal one was in 2014 where the oncologist was urging me to take the new cancer drug and I was saying, "Well, I'm not persuaded on the merits of that."

33:11 I sat down for a meal with David on a social basis in Bourke Street and I said to him, "I don't know if you're a betting man but if I was to ask you what odds you would place on whether if I had no treatment between now and Christmas..." and this was January of 2014. "So, if I have no drugs in the next 12 months, will I still be alive and kicking after 12 months?"

33:33 He said to me, "Look, I couldn't prove this, and my oncologist colleagues would probably criticise me for even saying it but knowing you and your case history, I'd say yeah you probably will," and it turned out of course he was completely right about that, but what happened next was even more interesting.

33:51 First of all, I was - because he said, "That's just my professional instinct," and I said to him, "Well, as a consultant cognitive scientist as distinct from a cancer surgeon, the term of art I have to say to you is not professional instinct but professional intuition, and we have very good research now on intuition and there are categories of judgement for which it's surprisingly reliable, but there are categories of judgement for which it really isn't reliable. It's predictably unreliable and one of those is subjective estimates of probability which, if I may say so, you've just done. So, with the greatest respect I wouldn't put too much weight on your probability estimate there."

34:29 Now, what he then said just caught me completely by surprise. He didn't get in any way defensive. He said, "You know, I'd like my whole team to do one of your critical thinking workshops. In fact, I'd like all the medical staff at Peter MacCallum Cancer Centre to do one of your workshops." I said, "Whoa, now we're really talking. How many people would that be?" He said, "Oh, about 200." I said, "Well, that's a lot of workshops. Let's start with your team. How many people are in your team and what's at the back of your mind which would have you think that such a workshop would be of any value to them?"

34:56 He said, "There's 16 members of the team." He said, "Don't get me wrong. We're a good team. We work well together. We generally get very good results, but we're in a fast-changing field and I'm not sure that we think as hard as we probably should about our assumptions, about our standard operating procedures, and what I'd like you to run for us is a workshop where you freshen us up about the way we think, about the nature of assumptions and inferences and outlooks."

35:22 I said, "That I can do," and that we did do, and so I had this I suspect pretty unique experience where as a long-term cancer patient/melanoma patient, I was running a workshop down at Lindenderry on the Mornington Peninsula, a lovely setting, for the best melanoma team in the country on the nature of their thinking.

35:42 Nick: Indirectly helping your own case...

35:44 Paul: Well, indirectly at least because in fact, as I explained earlier, I was constantly challenging them about their assumptions and wrong footing them in terms of what actually happened in my body and surprising them by the calmness of my demeanour because my GP and the oncologist would say things like, "You must be feeling panicky," and I'd say, "No, I’m fine. I'm thinking analytically and let's just make the best decision in the circumstances."

36:09 So, this workshop in 2014 was a kind of culmination of that and there was a lovely codour to that. Well, I say codour, but I referred earlier to my conversation with the oncologist about whether he'd read Gould and Schneider and so on which he hadn't. As I exited that conversation with him that day, I said to him, "Are you coming to the workshop at Lindenderry?" He said, "Oh, I’m not important enough to go to workshops." I said, "I'm sure you're important enough for this one," and he paused and said, "Do you mean that workshop that David is organising?" I said, "Yeah, that's the one." He said, "Oh, yeah, I'm going to that. Are you going?" I said, "Yeah, I'm running it, I'll see you there."

36:50 So, as I said this was a pretty unusual experience and a very moving one. We used to say, although the term has gone a bit out of vogue, it was pretty cool to be a long-term melanoma patient and to be running this workshop at David's invitation for the melanoma team, and from that point because they all knew me personally and respected me and so the dialogue became easier. So, that was great. That was really something.

37:17 Nick: Yeah, and as you point out you were fortunate that immunotherapy became available under the pharmaceutical benefits scheme at exactly the right time for you to be able to use it. So, did that save your life?

37:27 Paul: It's hard to calculate whether strictly speaking it saved my life. If you consider, as I remarked earlier, that what occurred was that they tried the genetic pathway inhibitor first generation. They tried a second generation of that kind of drug. They then tried a first-generation immunotherapy drug and none of these eliminated the last of the Mohicans, the final tumour, but there were no other tumours, and none had appeared in the 12 months in which I had no treatment, and none have appeared since.

38:00 So, you had a situation where first of all it's very anomalous that there's only the one tumour and the others had disappeared spontaneously. This one hasn't grown explosively, and the drugs are not eliminating it. At best, what they're achieving is that it's not growing, but they're not eliminating it. So, are they saving my life? Well, it's a bit of a line ball decision really.

38:20 They then try the fourth drug, and the tumour shrinks to the vanishing point and at that point they declare victory and the oncologist, the same one who just treats people, declared to me, "You're a cat with nine lives. It's gone. You're in complete remission," and he showed me the scan. I said to him, "I'm not persuaded that's all together true because if you look at the image you're showing me and the pathologist report about it, there appears to be still a bit of it there." He said, "No, that's just noise. No, you’re fine."

38:46 Well, it turns out that he was wrong, but it took two years to establish that because it had shrunk almost to the vanishing point and it was very difficult to determine whether there was live tumour there or just noise. It had turned out, but it took a lot of teasing out, that it was live tumour, and it did start to grow again and so they then tried to cut it out and they found they couldn't and then they hit it with radiation and finally that knocked it out and that was three years ago.

39:13 Nick: So, could you tell us a bit more about the development of immunotherapy and its relationship to cancer research and the medical establishment? Because it hasn't always been such a well-accepted field of science.

39:24 Paul: To say the very least and in fact, this is a fascinating story and many of your listeners have probably never caught up with it, but it's a story of tremendous perseverance, of exquisite research and of triumph in scientific enquiry and the two guys who finally made the breakthrough, James Alison and Tasuku Honjo were awarded a Nobel prize in physiology and medicine in October 2018 for this breakthrough in immunotherapy.

39:55 Now, if all you did was read a news story saying they've won the prize for this and you didn't know anybody who had suffered from cancer, you would just think it was just another scientific discovery, but the background to it, as Charles Graber explains in the book from which I read at the beginning of this interview, makes clear that for 100 years before their breakthrough - more than 100 years in fact, going back to the 1890s - there had been doctors and specialists who had seen incidental episodic empirical evidence that there were circumstances under which the immune system seemed to fight cancer, but nobody could figure out how this happened, whether it was reliable or accidental, whether it was something else, whether it was a strange and unspotted variable in the equation.

40:47 So, for the longest time the consensus had been within the cancer establishment, in the medical establishment more broadly, was that the idea of immunotherapy was a pipe dream and that people that kept banging on about, "We should be working in this," were cracks, that it would never happen, but it did, and it happened for two reasons you might say.

41:11 The first reason was that okay there were other treatments. There was radiation, there was chemotherapy, there was surgery, but these were fierce holding actions which were of highly variable success and quite traumatic. So, there was clearly a need for something better if it could be found and because of that, there were always some people who kept going back to the drawing board and saying, "It's got to be possible. Given that this is something that happens inside the body and ails the body, for the immune system to somehow be targeting against it..."

41:48 The thing is of course that cancer is a complex thing and even understanding it as distinct from just seeing it and trying to wipe it out with radiation or chemotherapy, that's hard enough, but to understand also the immune system, how exactly it works and how to target cancer with it, that required an enormous amount of ingenuity and research, and the fact that it finally happened is just mind blowing. It's a beautiful illustration of the difference that science makes as distinct from voodoo and superstition and empirical medicine and guess work.

42:20 I had many conversations with the melanoma team about this which in a sense built on the workshop I'd run for them and what I said to them at various points was things like, "My doctorate was not in medicine. It was in international relations and it was a study of US counter insurgency strategy in the Philippines, Vietnam, Olsbu, during the cold war," and everybody who is aware of these operations all know that they were nasty, brutal, costly, not very successful operations. Particularly in Vietnam, it was a debacle in a lot of ways.

42:55 I drew analogies between traditional medicine treating cancer - radiation, surgery, chemotherapy - and the nasty forms of counter insurgency where there's an insurrection and what do you do? Well, you kill the insurgence, you kill Viet Kong. You use Agent Orange; you use bombing, and you cause enormous damage and mortality and trauma in an effort to defeat the insurgency because you don't know how otherwise to do it.

43:22 Immunotherapy is the equivalent of saying look, the real problem here is that there is anger and unrest in the society and we've got to address the root causes of that. We’ve got to get to people who are being mobilised by the revolution, understand better why they are susceptible to it and find ways to address their grievances and even to talk to the revolutionaries about a constructive solution to these problems, rather than just killing revolutionaries and peasants.

43:48 Nick: And knocking over the whole society...

43:50 Paul: Exactly so, and David's response when I first raised this with him was he said, "You know, we use exactly that metaphor for medicine." So, there was a common language. So, immunotherapy was like this far more sensitive and intelligent approach to how you deal with underlying problems, and that was a really interesting conversation to have.

44:09 Nick: Yep. In 2016, you travelled to Brazil for the International Cancer Conference and toured Brazil with your cancer surgeon and close friend, David Speakman, who was and is the chief medical officer of the Peter MacCallum Cancer Centre. Tell us a bit about that experience and the conversations you shared.

44:25 Paul: Yeah, it was a great journey. It was David's suggestion in, let me see, 2015. I was about a year or 15 months into my drug treatment which would in fact continue for another 18 months, and he said to me, "How about coming to Brazil with me next year, 2016, for the Cancer Conference in Sao Paulo?"

44:47 I said, "I can't travel. First of all, I'm too fatigued. I have to sleep 12 hours a day. I have to go into hospital every fortnight for a drug infusion and if I'm in Brazil, I'm not going to be able to do that." He said, "Yeah, but this is a year away, you'll be fine by then." This is a very breezy and optimistic approach.

45:07 I knew that in 2014 I had been invited to run a workshop in Washington DC and I'd had to end up arranging to do that on Skype because I couldn't travel and so I had every reason to think if I can't travel to Washington, how on earth can I travel to Brazil?

45:31 However, I said to him, "If you believe it's possible, let's at least talk through how it would be done," and by the time we got to 2016, the agreement was, "I'm still on the drug, but I'm doing sufficiently well. In fact, they think I'm in remission but they're continuing the drug just to be on the safe side. It's okay if I take a fortnight off from the drug if I miss an infusion in order to do this trip."

45:53 So, I did and in fact what I did is I flew via the Middle East. I visited Israel, I visited Malta. I then flew to Venezuela and spent a week with Claudia in Calabash and Valencia, then I flew to Rio de Janeiro. I met David in Rio and we saw Rio together. We went to Brasilia; we went to Iguazu Falls and then we went to Sao Paulo for the conference. So, it turned out to be an epic journey and I should add that it was on that journey that I wrote the first six poems - five or perhaps six poems - that became the foundation for my book Lyrical Epigrams.

46:31 But without going into all the detail, there are two anecdotes from that journey which are particularly memorable. One was that at David's suggestion we went to Iguazu Falls. He knew about it, I hadn't known about it, and Iguazu Falls is the Niagara Falls of Brazil and it's beautiful.

46:45 Nick: It's stunning, yep.

46:46 Paul: It's absolutely stunning and he said that one reason to go there, apart from the fact that it's scenically stunning, is that he used the metaphor of the waterfall for the dying process. Dying is going over the waterfall and down the river to the sea as it were, and I thought what a beautiful metaphor to reflect on in its setting and we stayed at a lovely hotel and we had an unforgettable time, and the falls were just magnificent. I actually wrote a poem there called Time in Lipez Air about the history of the falls.

47:22 The other episode was when we were at the conference in Sao Paulo, and we saw the city together. We went walking and we went to sessions in the conference but over a beer at one point, he said to me how remarkable my case had been and he said, "We wish we could bottle your immune system."

47:39 Nick: That's a nice compliment, isn't it?

47:40 Paul: It is. Well, it's a compliment not of course because I deserve any particular credit for my immune system because as I said earlier, I hadn't done anything to create a robust immune system. I just happen to have one. I said to him, "This is an intriguing idea. What would it mean to, as you put it, bottle an immune system? If you could clone somebody's immune system, what use what that be? Because you can't give somebody else your immune system. It's highly idiosyncratic."

48:06 He said, "Well, that's true, but what it would mean is..." and bear in mind this is 2016. The breakthrough into immunotherapy was two years away. "What it would mean," he said to me, "is that you can access and immune system and upgrade it and reinject it into the person whose immune system it was to activate it against cancer." That's I think really what he meant, though the expression suggested something else. That's exactly what's happened.

48:34 So, that was a really - given we talked about the Iguazu Falls, you might say this is a great watershed experience. It was the turning point in my treatment. It was the really cementing of a great personal friendship with David that I'd developed and there were unforgettable stories associated with it.

48:52 Nick: So, when you first entered into remission, it wasn't quite complete. Something happened in 2017 and 2018 which you've mentioned. Could you expand on that?

49:01 Paul: Yeah, I did remark earlier that from quite early on the metastasis occurred and it's probably worth recounting here, as I didn't earlier, that when I demurred about taking the drug with a conversation with the oncologist, I didn't know how that would go. I was committed to finishing a book and thinking, "Well, we'll roll the dice if we have to."

49:24 What none of us expected was that then when I went back three months later for a check-up for a scan, the technician came out after taking the scan and he said to me with the image in his hand, "You've been on chemotherapy for the last three months, right?" I said, "No." He said, "But some kind of treatment?" I said, "No, none at all actually." He said, "Hmm, that's very odd," because what he'd seen and couldn't believe was that whereas there had been three tumours three months earlier, now there was one and a half.

49:51 Nick: Because presumably your immune system had been...

49:54 Paul: Yes, but that's not what's supposed to happen and so he was puzzled that they hadn't picked up what he assumed would still be three tumours or more. So, I went to see David a few days later to discuss this and he was smiling. He said - I think this was the point where he said, "You've got to stop doing this. You're making us all look stupid." He said, "Look, it's really good news. One of the tumours has just disappeared and another has shrunk. We don't know why." So, I said, "Okay, good. So, so far so good. I didn't need to take the drug. Let's go another three months and see what happens."

50:24 Three months later, I have another scan and there's only one tumour left and that's the one in the groin which proved to be a real stayer, and at that point David said to me, "I have no medical explanation for why this is happening. It's terrific, but I have no idea why it's happening." That was the statistical anomaly thing. That's where I was, doubled down. First of all, it's only in the limb for years, then it metastasised but then it spontaneously starts disappearing. That's why he wanted to bottle my immune system for sure.

50:49 But the last one, to go then to your question about 2017, was a stayer. They thought they'd knocked it out with the drug, but actually it had survived and slowly started to rebuild and so finally when they admitted that, when they said, "Yeah, look, you were right, it was still residual and it had grown again," they hit it with radiation and that did knock it out.

51:18 So, to wrap that around with your earlier question about was my life saved by the drug, you could say no, first of all because my life wasn't directly threatened anyway, but secondly because in the end they had to use radiation to knock out that tumour. The drug didn't do it and the other two tumours had disappeared on their own. So, again at every point this is really anomalous but for that reason really frankly, interesting story.

51:39 Nick: Yeah. So, how did the whole experience reshape how you think about life and your priorities, coming face to face with going over the waterfall as it were?

51:48 Paul: Yeah. Look, I would say that philosophically my view was - well everything from now on is a bonus because the odds were, particularly at the start, that I would have been gone by no later than 2010 and by this stage I'm in 2018.

52:09 However, what had occurred is that while I was on the drugs and my energy had been low, I had gradually had to step back from my consulting practice. I just didn't have the energy to hold up my end of the business and I thought it doesn't particularly matter. I've got enough savings and in fact I kept one client going which gave me a six-figure income while I was ill. So, I was actually on pretty good wicket.

52:34 But two things happened simultaneously at the beginning of 2018 or the end of 2017. One is I was finally completely clear and therefore I thought, "So, actually I'm not going to die of this. Therefore, I've got to earn a living again." And secondly that one client said, "Look, you've been terrific, and this is no reflection on you, but we've hit the financial wall and we can't renew your contract, we don't have the money to pay you." So, double down now. I think, "I've got to generate an income."

52:58 So, I had to reinvent myself on the far side of the cancer and I've been in the process of doing it, and so I would say did it change my outlook? Yes. A) Life for now is a bonus. Let's enjoy it, let's live life to the full. Secondly, I have to invent a way now to make a living because I've run out of what I used to do. Thirdly, I had really become - and it was clear that I wanted to double down on this - a creative writer and so I wanted to reinvent myself precisely as a creative writer and that's what I've been doing for the last two years or so.

53:35 Nick: Yeah. A lot of people think about their lives as being divided into before and after some major event and two spring to mind with regard to your life. The first is before and after your cancer diagnosis, and the second is before and after meeting your partner, Claudia. So, how do you see the relationship between those two big C's which have both been the making of you but also the antithesis in terms of positive and negative impacts upon your life and vitality?

54:03 Paul: Yes, there's a profound truth in that and in fact I would weave them together this way. I gave this of course a great deal of thought during the cancer years if I may put it that way and that is why did I develop cancer? So, one possible answer diagnostically is cancer is just a random thing that can happen. Our cells are cancers waiting to happen in a way and there's very good science around this. People can get cancer for no apparent reason and so one shouldn't read too much of a presumptive causal nature into getting cancer. If you've been a heavy smoker and you get lung cancer, then it's a reasonable chance that it's because you're a heavy smoker. I had never been a heavy smoker. I had never been a heavy drinker. I hadn't done anything particularly unhealthy, but I thought to myself, "What can undermine your immune system and your resistance to cancer developing is stress," and in the 1990s I'd had a stressful decade. I'd finished my doctorate running on empty. I had been denied security clearances and had great difficulty getting into defence intelligence. I'd done well in it but then still I wasn't getting sponsorship. The diplomatic service wouldn't have me. I tried to negotiate a move professionally to banking in Hong Kong and I couldn't make that work. I had a number of relationships, some of them really passionate, romantic relationships. I couldn't make them work. I finally just gave up on all that and walked away and the late 90s were a difficult time for me.

55:33 So, the 90s were stressful and it occurred to me that maybe that had undermined my resilience and triggered the cancer, but of course you've got to say looking back, if stress had undermined my resilience and allowed cancer to arise, how then did my immune system prove so resilient after 2004?

55:56 Well, it's in 2004 that Claudia appears in my life and again assigning causation here is distinctly tricky and I hesitate to do it but there's no doubt in my mind that said, that Claudia has been a remarkable presence in my life, to a greater extent than any other individual I would say and coming from completely outside my miller. She came from a Spanish speaking world, twelve years younger than me. She's a woman, not a man, but she very quickly saw what really made me tick and she fell in love with that, with the latent and frustrated creative writer in me, with the intellectual in me, and I came to realise that's who she was for me and I treasured tha

56:52 I think we spoke in a different interview about this question of my relationship with Claudia, that challenging as it was in all circumstances given her needs, given her departure, given her gender orientation/sexual orientation, given my cancer, it was really challenging to build a lasting and profoundly intimately relationship, but we did, and I think we did because she is a person of remarkable character and because she loved me for the best that's in me. She really saw what it was, and she loved that, and she was determined. She really wanted me to live.

57:23 Nick: And the things that she saw within you as a writer and a poet only really emerged and flourished following the cancer diagnosis and her appearance in your life.

57:32 Paul: They did. I mean, I wrote poetry prior to that but it only became to flourish you might say in good conscience with her influence because instead of me doing it on my own and thinking, "Well, it's eccentric and nobody does this really," Claudia was passionate. "People do write poetry in Spanish and in English and in other language and you're a poet and you should write poetry and what about this and what about that," and she would give me books of Spanish poetry and so on.

58:02 The first poem I wrote for her I wrote within weeks of her arriving in Australia, and I've got it framed and sitting on my wall to this day, and it's called Ancient Bridge and it's about - it uses a bridge in Toledo in Spain as a metaphor and implies that metaphorically speaking we've met by chance walking across that bridge from opposite ends and just happening to meet in the middle. That's the original seed of the story in Darkness Over Love that I started to write years later about Fenimore and Margarita, and they meet in Toledo in Spain and they walk across that bridge.

58:37 Once I was free of the cancer and Claudia and I started to travel, one of the places we went was Spain and we went to Toledo and not only did we walk across the bridge, I took a whole day to step her through the way that Fenimore and Margarita spent their day in Toledo on their first day, their first acquaintance. So, it was quite magical stepping into a story based on our story set in Toledo and then stepping through that story. That was pretty magical and that was about two or three years ago now.

59:09 Nick: And finally, what general observations would you make about your case and the approach to cancer and cancer treatment in our time?

59:17 Paul: Look, the single most striking thing about this - and I wrote this in an essay in a press that came out in early 2019 as I recall - is that - well, I suppose two things rather than one. The first is this. If I was a citizen of the United States, to say nothing of an African country or a Latin American country and I didn't have ample means, I wouldn’t have been able to afford the treatment I had. So, this is a case study you might say in the utility and humanity of the kind of Medicare system and pharmaceutical benefits scheme that we have in Australia. Without any doubt, I was a beneficiary of that.

1:00:04 It didn't - other than the fact that income was foregone because I didn't have the health and energy to work, I wasn't out of pocket because of the illness. I didn't have to pay for those drugs. I didn't have to pay for the surgery. I didn't have to pay for the pet scans, and I couldn't have done so had I had to do it. That drug, the immunotherapy drug became available free of charge for me. Had it not been on the PBS, it would have cost $13,000 every fortnight.

1:00:30 Nick: A pop, wow...

1:00:31 Paul: And there's no way I could have afforded that, and I wouldn't have tried to raise the money. I would have said, "Well, it can't be done." So, either I would have squeaked through because my immune system pulled me through being such an anomalous case or I would have died, and in the United States many people die because they don't have health insurance and they can't get the expensive treatment. So, that's the first thing. I would say it's a very nice case study of why it's worth having such a system and we do in Australia.

1:00:56 But the second thing is a broader point about the kind of exquisite science that was necessary and it was successfully conducted to invent immunotherapy, and I'd perhaps like to finish and maybe this is an appropriate way to finish, by just driving home this point that we face many challenges in the 21st century - political and economic challenges, environmental challenges, health challenges like cancer is only one - and if we are going to solve those problems, we need to do really good thinking. We have a lot of polemic going on at the moment. Polemic is unproductive. People get angry, they accuse one another, they deny evidence, they make stuff up. This is singularly unproductive and unhelpful if you want to solve serious problems.

1:01:58 The people who invented immunotherapy did none of that stuff. Their cohort, the very small number of people who persevered over the years, did face of course dismissive remarks about that enterprise from the establishment but it wasn't a public furore. There wasn't anger and fake news we'd say these days about it really. It was just these people persevered, managed to get enough grants, they did the science, they did extraordinary science, and we got the results. That's a model that we need to emulate. We need to understand when we're making public policy, that in order to solve complex problems you need to find dedicated, highly intelligent, highly skilled people to think hard about it and keep thinking because that's the only way you're going to get solutions.

1:02:43 Nick: Thank you very much for your time, Paul. It's been a pleasure.

1:02:45 Paul: Great interview.