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Having cancer blow up in your face is never easy, but it’s especially tough when you are only just beginning to make your way through life as a teenager or a young adult. Michael has been through cancer himself and he and went on to become a psychologist helping thousands of young people to deal with cancer. He’s also built this incredible support system through CanTeen, an organisation that helps so many young people to deal with caner emotionally and socially. Michael is simply an amazing person and a brilliant mind! Here are some things we cover today:
- 4 key developmental tasks teenagers struggle with the most during cancer
- Why peer support group is crucial during cancer
- 3 key factors that enable us to deal better with cancer
- Key approach to build resilience for young adults
- How to deal with uncertainty
- and much, much more!
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Change your Thinking by Sarah Edelman
moodgym – Online self-help for depression and anxiety
Episode 026: Stand Up For Your Rights
Episode 033: Your Sexuality and Intimacy Through Cancer
Joe: Michael, so how did you first come across cancer?
Michael: I was diagnosed with a garrotted tumour in my neck when I was 18 years of age. I was basically told that once the diagnosis had been made that there was very little hope, that I had about three months to live.
Michael: That’s how I came across cancer.
Joe: That’s shocking. What happened next?
Michael: I was given a choice of having palliative care or I could have lots of head and neck radiotherapy, but it was explained to me because this was the mid-70s, that the amount of radiotherapy that they would have to use to kill the tumour would kill a lot of the tissue around it. There was no guarantee that I would survive the treatment, but I elected to have the treatment. It was pretty horrible, I didn’t enjoy it very much, but I’m here, so it was a good decision.
Joe: That changed the course of your life?
Michael: It certainly did, certainly did. When I was in hospital, I read a book which changed my life. It was a book called: The Private Worlds of Dying Children. It was a book by a medical anthropologist called Myra Bluebond-Langer. Very strange name. What she’d done is, in the 70s, she’d gone into a children’s leukaemia ward and she just stayed there for a year talking to the children, just playing with them.
She discovered so much interesting stuff. The thing that really struck me is that even the policy on this children’s leukaemia ward was not to tell them that they were dying, they all knew anyway, but they also knew that they had to keep that knowledge from their mothers and fathers. Myra called this the mutual pre-tense syndrome. I just became fascinated by the whole area of psychology, cancer, and what later became as psychosocial oncology.
Joe: Yes, that’s really amazing, Michael, and you started CanTeen, which was the first support group for teenagers and children around cancer, which is absolutely amazing. How did that come about?
Michael: I wrote my PhD at the University of New South Wales on adolescents with cancer. I didn’t stay for one year, I stayed for four years on the ward, just talking to the kids as they lived and died. I discovered that the doctors back then assumed that if they made the young people’s bodies resilient to the disease that their minds would follow. In fact, it didn’t work that way at all. Many of the kids had significant psychological problems in addition to battling cancer.
It struck me, and this is what my PhD said, that we need to look after their minds, as well. This was, I think I finished in 84’, and the beginnings of psychosocial psychology had just started. I published four or five articles in the medical journal of Australia, highlighting the developmental needs of teenagers with cancer. The logical thing at the end of the PhD was the start a support group. I’ve had a lot of help doing that, but it’s still the most important thing I’ve ever done in my life. It was just a great opportunity and I took it.
Joe: Yes, fantastic and good on you. Thank you so much for doing that. What are some of the things you’ve discovered that help young adults and kids, help to deal with it mentally and socially and emotionally?
Michael: What they needed was I think education, information, and support. What I discovered was that there were four key developmental tasks that these kids had trouble with. One was emancipation from adults, because they were sick, many of them were immunosuppressed. They weren’t allowed to be normal teenagers and they’d felt that very keenly, they’d felt like they were put in a cage and someone had thrown away the key. Instead of being able to spread their wings and fly like most adolescents, because they were sick, their parents were very overprotective and, in many instances, physically, they couldn’t go out because they would just get infections.
The second task that they had difficulty with was identity of formation, just knowing who they were, because what was hanging over their heads the whole time was, well, maybe I won’t be at all. Maybe I’ll die. That was pretty hard. It was like the Sword of Damocles hanging over their head every second of the day. How can I figure out who I am if I might not be here tomorrow? The third task was one of making friends, many of them were highly stigmatised by their friends. They weren’t at school, so they missed out on that socialisation. Even when they were home, quite often, their friends weren’t allowed to come around because of their immunosuppression.
That’s a key developmental task. The last task, which I think was one of the most important ones was going to school, and many of them weren’t able to do that either. Back then, the schools weren’t that great about sending work home. Four of the most important developmental tasks of these young people were severely compromised by their diagnosis and the treatment.
Joe: Wow, that’s so shocking. Being linked in together in a support group, how did that help?
Michael: The most important thing you have to understand about adolescents is that no other time in their life is there desire to be with their age mates so strong. I felt very keenly when I was 18, that I was completely abandoned by my friends, they’d all thought that I was dying. I had a few exceptions but not many. I felt very lonely. Driven by that personal experience, I thought, if we actually created an artificial peer group, where the kids could actually just get together and the one thing they had in common was that they were either brothers or sisters, or people living with cancer.
That this would be a community and they wouldn’t care what other people said of them. That’s exactly what happened. We started doing outings. Then the outings became camps, then the camps became excursions. It took on a life of its own. You look at Canteen now, it’s amazing, that same formula still works 33 years later, still working.
Joe: It’s unbelievable, isn’t it? Cancer diagnosis in itself, it’s just such an incredible turning point for someone in their life. How can someone, especially a young person, deal with it in a better way?
Michael: I think it boils down to resilience and what I discovered in my PhD is that there are some kids that were naturally resilient and some people who weren’t. The people who weren’t didn’t do it very well. Many of them, in fact, I think died, developed really significant psychological morbidity and were really impaired for a long time by their diagnosis. The resilient kids had a couple of things in common. One, they all seemed to have a charismatic adult in their life. One person, one adult person that they’d latched onto that made them feel safe and valued and really listened to their concerns.
The second thing that they had was, they had really good social and emotionally competencies, so before they were sick, they’d developed good problem-solving, decision-making, conflict resolution, anger management. They were pretty much the psychological package before they became ill. They drew on those social and emotional competencies to manage the stressors that were thrown at them. The third thing that they had was really good self-talk. They would tend to see life as it was, but they’d always try to focus on the good bits.
They would literally be able to, if they couldn’t change something that was happening to them, they’d change the way they thought about it. Really clever, good resilient self-talk. They also generally had something to occupy themselves, something that they were really good at. It might have been art, music, dance, drama, sport. The last thing they had was spirituality. They all had a sense of meaning, purpose, and belonging. Every single one of the kids that did well had not necessarily religion, although some did.
Many of them just had a sense of connectedness or relatedness to some thing or someone that transcended the material world. This combination of factors seemed to make them really resilient. If I were to capsulate it, I think that these kids were naturally pretty generous, they had really good empathy for other people, and they were quite mindful. That was really the key characteristics for those kids who did well.
Joe: Is there any way to build on your resilience?
Michael: All of those skills can be taught. Obviously, at CanTeen, we try and do that. As a clinician working with young people who are going through all sorts of difficult situations, that’s your aim, is to build resilience. It’s much easier to build strong, young people, than repair broken ones.
Joe: What do you think are the key characteristics to do that? What are some of the techniques that someone could apply as a young person to become more resilient and to build a stronger…
Michael: To practice mindfulness on a regular basis. There are now apps like Smiling Mind, which can teach you how to do that. To literally make a determination to be as generous and as kind and as empathic to all the people around you as possible, because we are hard-wired to do nice things for other people. We benefit from it, not just the people we’re being kind to. I think CanTeen gives young people the opportunity to reach out, touch, help those other people that are going through what they’re going through. I think that’s really important. The other thing is to find meaning and purpose in what’s happening to you.
I guess the greatest thing that ever happened to me was being diagnosed with cancer because it completely and utterly changed my life. Prior to that, I think I was a spoiled brat. My parents were diplomats, we travelled around the world, were driven around in limousines, we lived in beautiful mansions, we had servants picking up after us. It was just an amazing life, but this brought you down to earth because it doesn’t matter who you are, cancer doesn’t discriminate.
Joe: Yes, that really makes things real. Michael, when you’re dealing with treatment and it’s so overwhelming, as you’ve experienced, and you’ve spoken to so many others, is there anything that can help you to get through this whole craziness and uncertainty of dealing with it? What advice do you have on that front?
Michael: The same answer as I’ve just given you. I think treatment is incredibly stressful. There’s nothing good to be said about it. I remember as if it was yesterday, lying under a linear accelerator machine, knowing that for the next two days, you’d have terrible pain, nausea, vomiting, and that this was all supposed to be good for you. I think that having someone that you can talk to about your thoughts and feelings, who’s not going to be judging, very important. Secondly, having that capacity to one out, to do the mindfulness.
Terribly important. To find ways of coping with those moments. That might be through music. I was very prone of listen to music. It seemed to soothe me. It doesn’t work for everybody, but it really changed my moods a lot. You don’t feel like eating, so you basically can do as much – I actually found communing with nature, being outdoors very important. My parents actually bought me a house to die in, in the Marlborough Sounds of New Zealand. A little place called Motabu Bay.
I remember after the really horrible treatment time, I’d go down there, and I’d just wander and look at it. It has to be one of the most beautiful parts of the world. I don’t know if you’ve ever seen Marlborough Sounds, Google it, it’s gorgeous. That’s another thing that really helped me deal particularly well with the horrible treatment.
Joe: Wow, that’s incredible. Michael. How do you – it might be a weird question – but how do you know that you need help? How do you know that you’re struggling mentally with cancer? It is cancer, it’s supposed to be hard.
Michael: I think that many young people going through treatment, feel miserable most of the day, most of the time. They can often be bombarded by thoughts of death, dying, loss, grief. You can basically lose a lot of hope. You can feel helpless, hopeless, worthless, and you want to withdraw, you don’t want to talk to anyone. You can get quite irritable and angry. Probably not that much fun to be around, to be honest with you.
I think those are the big signs that life isn’t going well. If I had to summarise it, you develop a negative view of yourself, a negative view of your environment, that’s the people, your family, friends, school, work. Worse, you develop a negative view of the future. If you have that, I call it the negative triad of cancer. It’s not good. That’s when you really need help. You need to come and speak to someone like me.
Joe: Yes, absolutely. Michael, let me talk about depression and anxiety during cancer. How does that relate to the pressure and anxiety outside of cancer?
Michael: Exactly the same. There’s no difference. I think that it’s regarded by psychologists by more reactive depression. It’s in response to an event or we call it an adjustment disorder. Essentially, it has all the characteristics of depression, it’s just related to the fact that you’re going through a really terrible time. It’s not sadness, sadness lasts minutes, hours, or days, this is a pervasive and relentless sense of despair that goes for a long time and is much deeper than sadness.
Joe: Yes. Well, absolutely, it’s obviously incredibly tough to deal with in terms of friendships and relationships that are tested, because on one level, you don’t know what to say to people and you don’t want to be a burden and you don’t want to look stupid and weak. At the same time, I guess other people, they don’t really know what to say either because they don’t want to say the wrong thing or do the wrong thing. What advice do you have on that front?
Michael: My experience was that people didn’t know what to say, so they ended up saying really stupid things like, “I know how you feel.” Or avoiding your completely. I think the best thing you can say is, I’m here for you, I’m interested in helping in any way I can. I recognise that at times you’re not going to want to talk, but when you do, I’m here. I think that constantly holding out almost a psychological olive branch to a person, saying, “Look, I know you don’t want to speak at the moment, but when you do, I’m here” over and over again. Be a broken record because there’ll come a time when they will want to talk. If you just continue to be there for them, that’ll happen.
Joe: Yes, that’s fantastic advice. One of the other things about cancer is you’re constantly in between things. You’re in between appointments and treatment and waiting for test results, what do you think someone can do to deal better with this whole uncertainty that comes with cancer?
Michael: I think that for my money, my philosophy for those young people is, if in life you can’t change something, the thing that separates us from all the other creatures on the planet is that we, and we alone, can change the way you think about it. If you dwell on the uncertainty, if you ruminate about it. That’s like a psychological cancer, it will eat you up. The most important thing is not to do that, to consciously focus on the other parts of your life that are going well.
That takes quite a lot of psychological strength, it takes a lot of help and support, but I’ve found that not only with all the members of CanTeen that I’ve worked with, but all my clients now who are suffering, it works. You can actually train them to be resilient. It’s a fundamental tenant of cognitive therapy, that your thoughts influence your feelings, which influence your behaviour. You’ve got to start with the thoughts. You’ve got to change your thinking.
Joe: Wow. When you survived cancer, you’ve obviously the shadow still hanging over you because you’re still going for check-ups. You’re afraid of cancer coming back, how do you deal with it? How do you cope with the fear of cancer coming back?
Michael: I stopped going to my check-up appointments because I found them too harrowing. It was like there’s this syndrome called the Cleopatra Syndrome. Have you ever heard of that?
Michael: Queen of denial. You just deny everything that is happening. My coping mechanism after a couple of years was just to think, well, if it comes back, it’s come back. I’m not going to put my life on hold. I’m not going to spend hours waiting around for results and I had just decided that I was going to get on with my life. That’s what I did. CanTeen, of course, provides you with lots of things to do when you’re starting an organisation. I think that was a good distraction for me.
Joe: Is that when you started?
Michael: No, what you have to understand is that you go through this period of time. For me, immediately post the radiation therapy, I actually had to do university. I had to sit exams, so that was a big distraction. That worked very well for me. Then I did my master’s thesis on children with cancer in Wellington Hospital in New Zealand. Then I moved to Australia, did my PhD. All of it was one long, big working through what had happened to me. I used my academic studies to process what had happened to me psychologically. Does that make sense?
Joe: Yes, absolutely.
Michael: Still had anxiety, still had a little bit of depression, maybe even a little bit of PTSD. I remember feeling that I needed to get back into life. I never had the same amount of energy, radiotherapy takes that away from you. I couldn’t keep up, I didn’t have the stamina that my friends had. You adjust. That’s what I did. Then when I finished the PhD, it all came together. I was sitting in the bath one night and I thought, “CanTeen, that’s what I need to do.” It was overnight the whole concept gelled, and I just made it happen. I had lots of people to help me but that’s how it worked.
Joe: Yes, that’s amazing, Michael, and it’s something obviously finding that new purpose has given you an ability to deal with this whole thing in a completely different way.
Michael: If you go back to my resilience model, the last part was, finding meaning in what happened to you. I think that’s what I did. I didn’t know enough to do it straight away. That’s why I did the masters thesis and the PhD because I read everything that anybody had ever written on this whole thing to try and understand it, on an intellectual level. I dealt with a lot of the emotional stuff by intellectualising it. That was beneficial. I think it made me a better clinician.
Joe: Yes, absolutely. Is this what you would recommend to other people, as well, going through cancer or after cancer, to find a new purpose, something that really gets your energised, something that gives you direction and new meaning?
Michael: I think that’s one way of coping. It’s not for everybody. Certainly, it worked for me and it works for many of the kids with cancer. I think about the literally, now, hundreds of kids who have survived and who were within CanTeen. Obviously, you develop relationship with these people. Many of them have done amazing things. Won gold medals at the Paralympics. Kids who got one leg. Amazing stuff. Everybody does it in their own way. One of my friends wrote a book called: The Grief Book. She used her experience as a survivor to understand grief and to help other people work through their grief.
She wrote this little book. It’s available through Black Dog Books, which is a little book company in Australia. It’s got a hundred different ways for young people to deal with their grief. Do you see what she did? She used her own experience and she found something out of that, which was going to leave a remarkable legacy and her name was Elizabeth Vercoe. She did a great job. There are a thousand different ways people find meaning and purpose. That’s two.
Joe: Yes, fantastic, Michael. What are some of the best resources that you would recommend for someone to deal with the mental and the psychological impact of cancer?
Michael: I believe that if you’re a young person, there’s a book, a really good book called: Good Thinking, by a woman called Sarah Edelman. I think her co-author is Louise Raymond. I found that book quite simply brilliant, in terms of helping teenagers learn how to think about things differently. That’s a fantastic resource. I can’t really go by that. If you’re a bit older, a young adult, Sarah Edelman’s written a book for adults called: Change your Thinking. I think that’s very good too. Those are the two top-end resources. If you’re a teenager going through it, and you’re not big on books, there’s a website called: moodgym. I don’t know if you’ve ever heard of it, that helps you think about things differently, as well. In terms of self-treatment, I think that’s outstanding, really good. There are a couple of other online programs, This Way Up is one of them. There’s another one called MindSpot. We tend to think things now are online because the whole world is online. The resources can be found online. Those are the best I can think of.
Joe: Cool. Fantastic. Thank you so much, Michael. It’s incredible.
Joe: Thank you for all the stuff you’ve done with CanTeen, it’s mind-blowing.
Michael: It was the young people who did it. They were really good.