In this episode, I’m talking to Suzanne Chambers who has a fantastic book that helps men deal with prostate cancer. Filled with tremendous insights and practical advice, this book should be prescribed like medicine. In this interview, Suzanne shares:
- How to use your inner resources to better deal with cancer
- The importance of recognising your own instinctive reactions
- Becoming the expert on your own illness
- Separating the dubious advice from the truth
- 3 types of coping
- Making big decisions under stress
- How to deal with intrusive thoughts around cancer
Joe: Hello, my friends. This is Joe Bakhmoutski and welcome to Simplify Cancer Podcast. Today, I’m talking to Suzanne Chambers. Suzanne is a psychologist who has been helping folks with cancer for many years. She took all that knowledge and all of that experience and put it into a fantastic book called: Facing the Tiger. That is specifically aimed at men dealing with prostate cancer, but most of the insights shared in this book is universal. Suzanne is practical, down to earth, and profound. I promise you’re going to love it. Suzanne, I know you’ve done so much more than writing this book, but please tell about yourself, about who you are, what you do and what you’re passionate about?
Suzanne: Sure. My background is that I’m both a registered nurse and a registered psychologist. I’ve done many things in my professional history. I started out as a registered nurse in intensive care. That was a very dramatic profession. Then I ended up working for the Cancer Council in Queensland, working with people with cancer in the community and developing community-based support services. It was really a journey of learning for me that started there.
This was back in 1989 I started working with people with prostate cancer. My best teachers were the ones who had had cancer themselves, who were very generous with sharing their stories with me. How I got into it, was I would go away and learn what the professions and what the research had to say, come to some conclusions about what might help people, and then I would bring it back to my community of people who had experienced cancer, and share that with them. I’d say, “What makes sense to you out of this and how would you use this information?”
It was a really collaborative process that developed my way of thinking from all of those years ago. Obviously, that’s a couple of decades ago, that informed how I think about coping with cancer and what I say to people with cancer when I’m trying to give assistance to them.
Joe: That’s fantastic, Suzanne, that you talk about it as a learning experience. When you looked at the research and you tried to bring it into practice and get feedback from real-life people, did you find that in terms of the research out, did it align with how people tried to deal with it in real-life, so to speak?
Suzanne: I think it did. The way that I look at research is, having cancer is really confusing for most people because it’s a shocking experience for most of us. Trying to make sense of it is really hard because you’re stressed and your anxious. The point of psychological research in this area, I always say, is to help us with a map. To help us go, ah-ha, that’s why I feel this way, that’s what this means, that’s what driving that, therefore, some ideas for how I can help myself might be this.
From my point of view, if anyone is doing psychological-type research with people with cancer, they have to be very focused on being creative in finding solutions for people to help them in a difficult circumstance, manage the best they can. Most people are doing the best they can, most people do well but sometimes you can get overwhelmed. That’s when having somebody who’s used to putting a bit more of an analytical brain on it can give you tips that you can try out and experiment with, to see how you go and be open to that.
Joe: Yes, absolutely. It kind of sounds like your approach is you’re essentially guiding people to find solutions themselves, is that right?
Suzanne: Absolutely. Well, I don’t know about you, but the last thing, mostly I need, is someone bossing me about. I do think people can be their own best friend, have to draw on their own inner resources and no one knows you as good as yourself. If you can have someone be a good sounding board for you, which can be a good friend, or it might be a health professional or a volunteer, who helps you understand yourself a bit better, find within yourself your own solutions. People are more likely to stick to their own solutions. That’s the fact of it, we know ourselves, we know what we like. If someone can help us find what our strengths are, what our best coping resources are, I think that’s a great way to go.
Joe: Yes, that’s incredible, Suzanne. How would you suggest people go about doing that, perhaps on their own, or with their friends? How would you go about tapping into your own resources and finding solutions that are unique to you?
Suzanne: I think there is some knowledge people can gain by getting information. There is so much information available for people with cancer. If they’re in Australia, they can ring the cancer counsels. There’s a 13-11-20 toll-free number that people can phone. There’s so much online that you can look up, as well. The framework that I have learned from people with cancer, again, that I’ve worked with, that seems to be most helpful, is the stress and coping framework. What that means is, when cancer happens to you, it’s a major life stress. In some ways, it’s not that different to being in a car accident or having something really difficult happen to you, where suddenly you feel threatened and the world seems different and you’re not sure what to do.
In the book, I discussed this, you will react in a way as if a tiger has just walked in front of you. You’ll have the fight or fight response. It’s hormonally driven and we’re built that way. We’re built that way to help us survive. A lot of our reactions to things are instinctive. If you understand that and you can understand why your body is acting that way, then that gives you some tips about specific strategies that you can use that might be more helpful to you. I use an analogy where I say, your approaches to coping are your toolbox and you need more than one tool to fix a car, usually, you might need one tool for yourself. People have a tendency, we all do this, to have a particular way that we deal with difficulties. Some of us like to chat a lot, some of us get emotional and express our emotions, some of us like to hide away.
Nothing wrong with any of that, unless it’s not working for you or you’re overusing one strategy. The real tips are to be flexible, to be prepared to think creatively and laterally about how you might cope with the situation. To seek information so that you’re well-informed. To be your own best friend in that sense. To not be self-critical about how you’re doing. In any difficult situation, we’re all doing our best. We’re all trying hard. We just might need a little extra help sometimes.
Joe: That makes so much sense, Suzanne. One of the things that’s really helped me was going on and learning as much as I could about my cancer, learning about all the different paths it can go, learning all about treatment. Become an expert in it, if you will. That gave me a lot of confidence to, first of all, feel comfortable about what’s happening. Secondly, to ask informed questions when I was seeing a specialist. Do you find that is a good way to go about, as well?
Suzanne: Absolutely. I love the words you used because you are the expert in your own illness. You have to really trust your own instincts on that. I see so often people that I’m working with cancer who just know so much about their illness because they get informed. It really helps. It’s good if you can try and get informed before you talk to the doctor, if that’s possible. It makes it more likely that you’re going to really understand what he’s talking about or what she is talking about and be able to ask informed questions. There are lots of strategies that people will suggest, like write down questions before you go, take a buddy with you before you go to the doctor, so that you’ve got an extra pair of ears.
I think all of those things are helpful. Workout with the doctor. When I need an extra question answered, who do I call for that? Setting yourself up so that you get home and you go, “I should have asked this, I really need to know that” and know how you’re going to get that piece of information. Again, as I said earlier, there are lots of services around now. Much more so than when I first started working in cancer in the late 80s. There was really nothing around then. In fact, back in those early years, we started running a group educational programs over a six-week period, where we would get health professionals to come in and deliver talks for people. We would have hundreds of people turning up, the room would fill out.
There was not much online, there was not much on paper, there wasn’t a helpline, not really, back then. Now, there are lots of places people can go. There are people like yourself. Good to know what’s out there, be a canny consumer, as well, though. There are people out there suggesting things that are probably not helpful, so you’ve got to think, what’s the evidence for this? What’s the likelihood that that really would be helpful. You’ve got to be a bit discerning. Again, that’s where often your doctor or a good friend can play a role in saying if that really is a sensible ideal or not.
Joe: Yes, absolutely. Do you see this dubious advice out there? If so, in what areas, how do you separate the truth from something that simply isn’t true?
Suzanne: If it sounds too good to be true, it’s probably not true. That’s what I think when I go to buy a cosmetic, is that really going to make me look ten years’ younger? Not likely. That’s not likely. That’s a very girly example but that’s probably not going to be true. Is that really going to make me lose five kilos in the next week? Probably not. It sounds too good to be true, probably not true. Go to reputable websites, so Cancer Counsel Australia website, there’s the National Cancer Initiative in the U.S. Good websites. The back of my book has a list for prostate cancer and reputable websites. Just put your sceptic hat on. The same goes for a whole range of things. As a person with cancer, the same as anyone else, your money is an important resource for you and so is your time. You want to make sure you’re investing your time and your resources into something. You want some good evidence that it’s going to be helpful.
Joe: Absolutely. Suzanne, I know that you spent a huge amount of time, obviously, working with prostate cancer patients and survivors. What are some of the unique challenges for folks with prostate cancer and what are some of the things that we have in common universally, everyone who’s facing cancer in one shape or form?
Suzanne: Cancer is a really stressful event for anyone, regardless of what cancer it is, really. No one wants to hear that word come out of their doctor. It’s distressing and regardless of the types of cancer you worry about, what does this mean for my future? What does this mean for my survival? How is this going to change my relationships? How is it going to change my ability to work, my ability to play? All of these things will go through a person’s mind. The world is changed from a diagnosis of cancer. Everybody’s world is changed from a diagnosis of cancer.
Some of the ways in which it changes will be the same in the sense that the world can somehow not seem like the safe place that it seemed before. I think we all act as if nothing bad is ever really going to happen to us, and we’re not going to get cancer. There’s nothing wrong with that. That’s a normal unrealistic optimism, but the reality is, cancer is really common. If we don’t get cancer, someone in our family is likely to get cancer. For anyone, it’s a shock when that happens. If you then start looking at what things make it harder or not so hard, it’s harder on you if you get cancer when you’re young because you’re less established in life, you less expect to get cancer when you’re young.
If you’ve got dependent children, it’s tougher because you’ve got all of those financial responsibilities. If you’re in a new relationship, it’s tougher. If you don’t have a lot of resources, if you’re perhaps in a stage of life where you’re struggling a little bit financially or in other ways, the added weight of cancer is extra hard. Having said that, regardless of your place in life, getting a cancer diagnosis is awful. Even when you’re older, you don’t expect to see that coming around the corner, for most people. Where it differentiates more about the cancer itself is if your cancer has been picked up very early. Obviously, it’s easier to be optimistic about that than if your cancer was picked up at a late stage, even though there are wonderful treatments for advanced cancer now, as well. Then the types of side-effects that you’ll experience and how it’s going to change your physical life, obviously, that’s going to be really dictated by where is your cancer and what sort of treatments do you have?
Are you having radiation therapy? Are you have chemotherapy or hormone therapy? Each of those things will have particular side-effects that a person will have to cope with. They vary by cancer type. In prostate cancer, things that worry men are things like urinary incontinence, although, it’s much less common these days, problems with erections and sexual life. If men have more advanced disease and they’re put on a hormone blocking therapy, then that causes problems with muscles and muscle wastage and a range of other things. Of course, for every cancer it’s different.
For some cancers like lung cancer, a particular issue that people with lung cancer and their carers face is stigma. We think of cancer as not stigmatized anymore, but some cancers are. People with lung cancer often feel like folks think they deserve it because perhaps they smoked, or even if they didn’t smoke, people assume they did. Some cancers are hard to talk about because they’re so personal, so bowel cancer can be hard to talk about and that makes it a bit tougher. There are all sorts of unique things that people might struggle with. Although, the core issue is, being diagnosed with something that’s potentially life-threatening.
Joe: That is so true, Suzanne. Cancer diagnosis also changes your self-image, the way you see yourself. Do you think that’s true?
Suzanne: I think so. It probably varies amongst individuals. I know when I talk to some people they say, “I feel like a stronger person than I was before. I feel empowered in different ways because of what I’ve had to learn.” Other people don’t feel that. They feel that this has left me in not such a good way, that I’ve learned to manage that. Then some people will say, I’m just the same person that I always was. It’s a pretty personal thing. Perhaps we can think about this more broadly. That in life, there are many difficult things that can befall us. We can lose a loved-one, we could lose our job. We might end up in jail, god forbid. Difficult things happen to people.
We might get divorced, we might lose a baby, all sorts of things might happen. When these things happen to us, I guess I think that they leave us with a mark that we have to learn to adjust to and that can be really tough to learn to come to terms with that and come to terms with, do I feel different? In what way? How do I create my new self? People talk sometimes about; do you create a new self, or do you become the same person. I think it’s a personal journey. We all do that differently. Most of us strive to try and find a meaning and learning something and put ourselves back together and then we get on. That’s the nature of humanity, isn’t it? Humanist of us all, we’re all out there struggling with different things. Sometimes that thing we’re struggling with is cancer.
Joe: Absolutely, Suzanne. That’s why I love your analogy of cancer because it makes this experience feel real, it makes you go through this physical fear, instead an anxious. As you said, this way is very natural. Having this range of emotions is really not helpful to you when it comes to trying to deal with this. Could you talk about why that is and what are some of the key skills and strategies that someone can use to deal with cancer in a better way?
Suzanne: Sure thing. The analogy of cancer is a title I got from a urologist that I work with, who used to say to me, “Some prostate cancers are pussy cats because they’re very low-grade and they’re not ever going to do much, and some are tigers.” They used to say to me, “We want to catch the tigers.” That stuck in my mind about that. I thought, you know, it is like a tiger in many ways because it’s that physical threat. The things to remember are there are two broad categories. Well, the broad categories of coping with a major life stress and with cancer. One of them is what we call emotion-focused coping. That’s trying to deal with the sadness or the anxieties.
That could be crying, talking and talking, running, trying to physically get that sense out of us. More of the stuff that we do that’s aimed at trying to relieve that feeling of sadness and tension. Then there is problem-focused coping. Which is coping where we go, right, I’m going to get the information, I’m going to understand this and I’m going to find out what I’m going to do and I’m going to apply a plan. Both are important, and you need a balance of both together. The third type of coping that has been incorporated into this model is meaning-focused coping.
That’s where we go, “I’ve got to find a way in my head to understand how I can fit this within my life story in a way that feels okay for me. It doesn’t mean I have to say it was a good thing, I’m glad I had cancer.” Really, that’s not the goal because, of course, you don’t want to have cancer, but it’s trying to set it in a sense of coherence of your life, in a sense. What I say to people, these are all the different ways that you can cope, and you’ll have your own preferences for coping. For some people, crying and talking to friends might be so not on their list of things to do, they don’t want to do that. That’s okay, what else can you do to get that emotion out. It might be that you might go for a walk-in nature, or you might watch a movie or distract yourself. A whole range of things. You might learn stress management techniques and try those.
I worked, many years ago, I worked on a program where I was doing therapy with women with genealogical cancer and their husbands. Part of my bag of tricks, so to speak, was to teach people deep breathing and relaxation exercises as a way, as a motion-focused coping to try and reduce those feelings of stress. As my first lesson about what blokes don’t generally like to do. Often, the chaps would say, there is no way I’m going to do progressive relaxation, but what I will do is, I’ll go out and hose the garden and then be quiet for a while. Finding different ways of distraction, of getting some peace, of trying to manage those emotions.
While at the same time, knowing that getting information and making a plan and making informed decisions can be helpful, as well. The key, again, is the flexibility, if you have one way of coping and that’s all you do, that’s probably not going to be that helpful in the sense. My example there is, if you’re in the doctor’s office and he’s trying to do an unpleasant procedure to you, like take blood or something like that, closing your eyes and imagining you’re in Bali or somewhere else and fantasizing about something else is probably a good way to dissociate from the unpleasantness of someone sticking a needle into you.
If you’re in the kitchen and a family member comes in and wants to talk about the cancer, closing your eyes and imagining yourself in Bali is not going to be helpful.
Joe: That’s not going to work.
Suzanne: Well, it’ll get an outcome that might not be pleasant. Try different things, be a bit playful sometimes. Give yourself a break. People are so judgmental about their own reactions and they’re thinking, “I should be stronger than this. I shouldn’t be upset.” Well, stop doing that to yourself. It’s okay to get upset sometimes. You are doing the best you can, so don’t judge yourself, be kind and compassionate to yourself and be your own best friend.
Joe: That is so true. I guess we put so much pressure on ourselves to be this way or that. You mentioned the third way, which is that way of coping, which is when you’re incorporating your cancer as part of how you see yourself, not necessarily in a way that you’re saying, it’s so great that it’s happened. Could you talk about that a little bit? Is there a way to incorporate that into your daily life?
Suzanne: I think it’s one of those things where psychologists have a fancy name for everything, so that you all think that we’re clever, cognitive processing. The idea that when you have an experience at some level in your mind, you’re working it through in your head. I’m sure many people will recognize this experience, where they’ve had something they can’t figure out the answer to and they go for a long walk and suddenly without any current stimuli, the answer pops into your head because at some level you’ve been processing it and working it out. I think coming to the point where you’ve made some meaning out of this experience is a matter of cognitive processing.
Things that help processing are allowing yourself to be sad, not insisting that you be upbeat all the time, giving yourself permission to be sad. Talking it through every now and again. You don’t have to talk about it all the time, but talking it through every now and again, you’ll come to that point eventually. I know I had a very difficult experience for me last year when my mother was diagnosed with cancer, she had a very advanced oesophageal cancer, so she only lived for six months, because I was so busy looking after her for the six months, I couldn’t let myself process it because I would have had too much to do, to look after her and make things the best that I could.
Then I think it took me a good six months after that until I finally had worked it through enough in my head to where I didn’t feel angry anymore and I could talk about it in a reasonable way. I think I had come to a sense of peace about that. the time-frame for coming to a sense of peace about what’s happened varies, but it’s important, we want to get to a sense of peace, we don’t want to have this chip on our shoulder or this monkey on our back forever. I don’t have a recipe for that, other than allowing yourself to think, allowing yourself to be sad.
Sometimes people find it helps to write stuff down, picking your mark for when you walk to talk it through with someone, test out ideas about what you think this is and allowing it to change. I know people I know who early on for the first few years after their cancer felt very tied up in their cancer identity and really saw this as who I am, I’m a cancer survivor and I’m going to have a very high profile doing this. Then after five years or ten years or whatever or one year, they decided, I’m done with that now and I’m moving onto a different primary identity. No rules for what’s right and wrong, just finding your path.
Joe: Yes, I’m sorry to hear about your mum, Suzanne.
Suzanne: Thank you.
Joe: I know in the book, I think you talk in a very profound way about making decisions under stress, how does it work and what can someone do to make better decisions when they’re facing cancer?
Suzanne: One of the ways that I describe it in the book is that if you think of your brain as your cognitive, cognitive just means thinking, your thinking work space, it’s where you toss ideas around and you weigh them up. When you’re anxious, when you’re very anxious, your cognitive works space or your thinking space becomes a bit more cluttered. It’s harder to find things and it’s harder to move them around. You’re more prone to making a decision that you might later regret, just because it’s hard to think it through. Understanding that just means that you’re in an emotionally charged situation, like you’ve just been told that you’ve got cancer, most of the time, there’s no need to make an immediate decision.
Remember that you’re in shock, that you’re trying to come – how has this happened, what does it mean to me? There might be some circumstances where an immediate decision is needed but that’s not often the case. Sometimes the best decision is, I’m not going to make a decision until I’ve had a chance to just settle down a little bit, talk to some friends, read some stuff, maybe get a second opinion and take some time with it. You can go through some structured process of writing down the pros and the cons, it sounds really boring and mechanistic.
I know, I had a friend whose partner was diagnosed with breast cancer and they were making a decision about chemotherapy and I said to her, “This is going to sound really boring but I want you to go to remember the choices you’ve been given and I want you to do the list of the pros and the cons and I want you to circle with red the things that you really want to avoid and then see how it looks.”
These were very intelligent people, who looked at me a bit funny and went, okay, then later said, “Do you know what? That actually really, really helped because the process of writing that down and really weighing it up, it suddenly became really clear to us what decisions we needed to make.” That’s a pretty straightforward process. These days, I was pretty interested to read the other day, it’s got a fancy name, they even call it design thinking. It’s true, it’s about being open to different solutions, thinking laterally, getting all of the information, then weighing up the pros and the cons. Then your decision will emerge.
Joe: That is so true. It’s good to hear that I have intuitively figured out design thinking when I was going through treatment. I actually wrote down these options on a piece of paper and I weighed it up with all the percentages of the likelihood. I have to say, it really helped me because it put things into perspective, I go, so when I look at it like that on a piece of paper, it actually makes it real.
Suzanne: Yes, it’s a good process to do for anything, really. If you’re going to make a hard decision, writing down the pros and cons of each possible option. The trick is, too, to be really creative of the outset. Don’t restrict yourself, brainstorm any possible solution. There’s a step before that actually, I should say, is getting clear about what the problem really is. Sometimes, you can think it’s all about choosing treatment but there may be something before that that’s bothering you. Getting really clear about first of all, what is the problem, now, what are all the possible solutions to that, what would be the pros and cons of each, then highlight and put to yourself which one’s matter to you most.
Values come into it, we’re not computers, our brains are not computers, people rarely make a decision based just on the data. We’ll have personal preferences for things. Some people will say, I’ve had men say to me, “I don’t care, I’m just never having radiation therapy, or I don’t care, I’m just never having surgery.” They’ll have personal reasons for that that often relate to other things that have happened in their lives. If that really is their feeling and that’s what they want to go with, then they need to understand that. It’s like when you think about – this is a bit of a bloke analogy – so when you buy a Holden, for example, did you buy a Holden because that was the best car, or did you buy a Holden because your dad always bought Holdens?
Or anything that you buy, why did you make that choice to buy that brand? Often, it’s because in your family that was the talk about what’s the best thing to buy. It’s a shortcut decision making strategy. We tend to do shortcut decision making, there’s nothing bad about that. Sometimes we might just want to have a bit more of a process than just the shortcut.
Joe: Exactly, because we think that we are so rational when we’re actually not.
Suzanne: That’s right. I don’t think that’s a bad thing.
Joe: Yes, but as you say, it’s important to acknowledge that some of those things are irrational and when you use a structured approach, it gives you some more confidence around what’s happening. I guess that could also help with dealing with negative, intrusive thoughts that you get when you have cancer, that you can’t just get out of your head. Is there anything we can do, Suzanne, to make that better, to make those thoughts go away or stop for a period of time? What can we do?
Suzanne: It’s a really good point because it’s really common to have intrusive thoughts. For people that don’t know what that means, it’s, for example, you’ve been told that you’ve got cancer and suddenly wherever you are, a thought, an unpleasant negative thought about the cancer just pops into your head and upsets you. We hate them because people don’t like these intrusive things. The trouble is, if you push it down and you suppress it, you make it stronger. If you tell yourself, I’m not going to think about White Holdens, I’m sticking with the car thing, you’re still thinking about it.
If you tell yourself, it’s just a weird thing that happens. If when you get an intrusive thought, you go, “That’s terrible. I must not think that, I must not think that, you will make it worse.” Okay? The first thing I would say is, intrusive thoughts, like that popping into your head, it’s just normal when something like this happens. Don’t say to yourself, I’m obviously not coping well, I shouldn’t be having those thoughts. It’s normal to have those thoughts will be stronger if you’ve got an appointment with the doctor coming up, or if you put the TV on and someone’s talking about cancer, there are things that might trigger those. It’s part of processing the cancer experience.
If the intrusive thinking gets so bad though that you can’t sleep or it’s really making you anxious all the time, then you can go and see someone to help you with starting to challenge those intrusive thoughts. In cognitive behavioural therapy, and I go through this in the book, there’s a process of saying, first of all, become aware of the thoughts that you’re having that are driving your distress, because sometimes you’re not even aware that they’re there. First of all, if you suddenly find that you’re feeling distressed, check yourself, what’s in your head and write it down, so you keep a little bit of a diary about what your intrusive thoughts or your worries are that keep popping up.
That way, then, you can look at them and you can see if there’s a pattern. Now, it’s quite well-known that there are typical patterns that people will have. There’s black and white thinking, it’s got to be all this way or it’s all terrible. There’s this black and white or all or nothing catastrophizing. If this has happened, therefore, everything is going to be terrible. That’s another common pattern. Self-blame, this has happened, now it’s my fault and everybody’s going to have a miserable life and it’s all down to me getting cancer. There are a number of different patterns. It’s normal, most of us do it, it’s like those of us, if you go to a car park and you can’t see the car, you immediately think it’s stolen or you think I must have left it on a different floor.
The reality is the same for people who think either one, the person who think it’s stolen gets really upset and the person who thinks they put it on another floor just thinks that’s boring, I’ll have to go and look somewhere else. Same objective thing happened, emotional reaction to the two things are very different. How you think does influence how you feel. Awareness of that and understanding your own personal patterns, so that you can then challenge that. It’s a common thing that drives insomnia, for example, is people who can’t sleep will often put their head on the pillow, immediately their thoughts are full of negative worries about the cancer or about anything.
Then they compound it by then negatively saying, “Now, I can’t sleep, and I won’t sleep.” They get more anxious and they’re less likely to sleep. We can torture ourselves very well with our own thinking. I do it, too. It doesn’t mean you’re crazy. I do it. I usually would think the car was probably stolen, although, as I get older, I realize it’s more likely I left it on the wrong floor. You can get a little bit of mastery with it. A different approach to the thoughts that some people like is, mindfulness, which stems from what is tradition and meditation. That doesn’t work for me very well, personally, but I know it works for other people.
You can try different things, you can try challenging your thoughts and replacing them with a helpful thought. No, I’m sure my car has not been stolen, I’m sure I’ve left it on another floor. Immediately calm you down a bit. Same sort of thing with cancer. Or mindfulness is more about becoming aware of the negative thoughts and then seeing then justice of thought in the present moment and trying to separate yourself emotionally from the thought. If you want to learn how to do that type of coping strategy, you can get self-help materials about mindfulness or you can get someone to teach it to you.
Or you can do cognitive challenging, one that I’ve just talked about, or another approach is to try to distract yourself to be more focused on what you’re really trying to achieve what your goals are. Most psychologists and nurse counsellors will have a range of different types of strategies that if a person feels like it’s getting on top of them a bit, and they want to feel differently, then get someone to teach it to you.
Joe: Absolutely. Suzanne, if you start writing things down and you notice a particular pattern that comes up, let’s say it’s self-blame or something else, how do you challenge it? How do you turn it around?
Suzanne: You ask yourself a question? Is this a realistic thought? What is the evidence that this is a realistic thought? I got a pain in my toe, I’m sure the cancer has moved there. Okay, hold that, let me pull back for a minute, what is the realistic evidence that that is the case, so you can challenge that thought with fact and then you can ask yourself a secondary question to say, is this a helpful thought to have? Is it helping me to think in this way? What can I practically do about the thing that I’m worried about? Is this helpful? You’re challenging the veracity and the helpfulness of that thought.
Then you say to yourself, what’s a better way to think? Replace that thought with a more helpful thought. It’s not all about, everything’s fine, I’m just going to think positive, not at all. It’s about coming up with a way of answering yourself that helps you to feel better about the situation. It might be, I’ve got that pain in my toe but it’s unlikely to be the cancer because I had my check-up last week and I was fine, and I’ll be seeing the doctor again. It’s not helpful for me to think this way, what else can I focus on? I probably kicked my toe or it’s a bit of gout or whatever. Then focus, direct my attention to something else that is more helpful.
Joe: Absolutely. Suzanne, I know that cancer is incredibly hard for people who go through it themselves but also, for their families, like I know it’s been incredibly tough on my wife and my mum. What would you say to someone who’s supporting their partner or someone who is close to them through cancer?
Suzanne: It’s really tough being a partner of the family member, because you have to put yourself second, there’s no question about that, the person with cancer has got the cancer, your job is to support them and look after them. You have your own fears and worries and concerns and it’s going to be exhausting. I think first of all, you’ve got to understand that as a partner, you’re doing the best you can. I think carers, partners can feel negative about themselves if they’re not able to relieve their person’s fears and worries and can be unrealistic about what they can do.
You do the best you can to look after the person that you love who has cancer. You remember that they’re a person still, too, it doesn’t give them permission to just be awful all the time. They can be awful occasionally, but they’re still a real person. That’s what I say. I remember many years ago, someone describing to me their relative who was being really difficult, their relative had cancer. I listener to this tale and long story and I said, “What were they like before?” They said, “Just the same.” Cancer is not going to turn people into a better person overnight. Let’s put it into context here and let’s work it through. In the end, we’re all people. We’ve got our own personalities.
Partners need to self-care, they need to give themselves a break, they need to every now and again go, “No, I’m going out and I’m doing whatever.” I know in my own family, my family is full of people that’s gotten cancer and every now and again I’ve thought, “That’s a bit much.” You’ve just got to negotiate that. Be prepared to say, “I can’t do it. I’ve got to have a break.” It’s like a conversation, I suppose, it’s like any relationship in a family, where two different people, we’re doing our best to look after each other, we’ll have misunderstandings occasionally.
You’ll need to talk it through, if you can. I say this in my book, I say, you need to talk about the cancer every now and again, but you don’t have to talk about it all the time. Negotiating those things in some way and working as a team. The best thing that people can do is work together as a team within the family and within a relationship.
Joe: Absolutely. The one thing that surprised me was that when I had cancer and I had friends and people I knew would say, “Just let me know how I can help.” I found it to be the most useless thing you can say to someone, because the reality is that now you’re in fact asking me to come up with a way to ask you for a favour. Do you think there are better ways, do you find, to ask for help that would actually encourage people to be more positive?
Suzanne: Yes, I suppose it’s a cultural thing, isn’t it? A lot of us come from cultural backgrounds. Where being stoic is the thing. We don’t need help, we’re just going to get in and march on through. I’m a bit like that myself. I think part of that is our responsibility when we need help as a carer, as a patient, to know that there are people who are close to use who would love to help us but don’t know what to do. Rather than feeling indebted to them, it’s like a gift to them, they’re watching you suffer, they want to help you, they don’t know what it is that would be helpful. I guess what I do with my friends when they’re going through an experience like this, and we all are going to have these experiences, I will actually be explicit.
I really want to do something to be helpful but I’m not sure what that would be. Give me a hint and I’m proposing; would you like me to take the kids out for the night? Would you like me to pop over for a coffee? Can I cook you something? Do you want me to just stop speaking? To be explicit about what it is that I need you to do. Similarly, when I was the person who needed help, when I was looking after my mother, I learnt to be very explicit about what it was that I needed. This is happened right now, it would be great if you could do X. I had to be explicit because people couldn’t read my mind, they didn’t know what it was, what was really happening with me.
The sort of help that I needed was practical help. I was very fortunate, I had some very good friends who were able to go, “Right, I can help your problem-solve that problem, Suzanne, and work that through.” I think sometimes the problem is within ourselves, in that we’re a bit of a stoic nation, in many ways. Not everyone, of course, it differs. The tendency to think you’ve got to be strong. Sometimes being strong means being prepared to ask for help.
Joe: Yes, that’s fantastic advice, Suzanne. Sometimes you just need to be very straightforward and direct about what you need.
Suzanne: Well, that’s it. Whether it’s saying, your neighbours are driving your crazy, can I drag them off for you? What can I do? They are very practical things. Some of that as a carer and a friend and supporter is just being observant, notice what’s going on and see if you can notice what’s an external stressor affecting the person you care about and try and get that away from them if you can. I always think practical help is a really good thing. Can I come over and shall we go for a walk together? What can I do?
Joe: Absolutely. As you point out in the book, it takes special courage to really deal with cancer. What could someone do to be more resilient through these tough times?
Suzanne: I think everybody who is coping with cancer has courage because they get up the next morning and they face whatever is in front of them. I think we probably don’t recognize our own courage often enough. It’s really just all the things that I’m talking about. When you need support, seek it. When people offer you support and it would be helpful, take it. Look around you at what is available for you, find things that give value and pleasure in your life and build them in. Do those things, take time for yourself. If you think of your energy as a bucket and difficult times leak water out of that bucket, you’ve got to put water back in. Find ways to fill your bucket.
Joe: Absolutely. In your experience, what are some of the most common misconceptions that people have around cancer?
Suzanne: That’s a hard question, actually. What would I think there? I guess people fear cancer treatments, but cancer treatments can be difficult but there are good supportive care services and treatments around to help you get through that. As a person with cancer, you should know that your opinion is important and what you want is important. You have a right to a second opinion and to ask questions and if you doctor won’t do that for you, get another one. You have a right to have care centred around your need, and you might need to be assertive around that. We all know now cancer is not contagious.
People used to shy away from people with cancer, that’s not so much the case anymore. Try to find out information so that you can allay many of your fears and understand realistically what is ahead of you. Know that most people cope with cancer pretty well. They get through it. They move through it. The sky looks blue again. You can feel like – I had a sister who had breast cancer when she was quite young and even I worked in the field, I was absolutely shocked. I still have this memory where I’m a bit of a catastrophizer, you might have picked that up. I just thought my job was to look after her and suddenly the world looked like the worst place for me, a dark place.
Do you know, that one day, suddenly, I noticed that sky was blue again? I was so sad, I felt like that sky was never going to be blue and beautiful again, but it was. It took some time, but it got there. It can be hard sometimes to know that there is a light at the end of the tunnel, but there usually is. Sometimes we’ve just got to be a bit patient until we get there.
Joe: Yes, Suzanne, you’ve met a lot of folks going through cancer. Was there a moment that touched you the most?
Suzanne: Do you know what I think? I think when I was first in the field and I was a mother of a young baby and I found if I was working with parents who had small children who had cancer, I think that’s because I could so imagine me in their place, that must be one of the hardest things to face. Again, what I learned over time is how strong people really are, and how parents can band to get through that experience. There’s difficulty in life that comes to us, no one cancer is better or worse, in a sense, really, to the person that’s experiencing that, it’s what matters to them right now. Someone once said to me, you know, Suzanne, suffering is not a competition. I thought that was a great thing when I heard that because I think at the time, I was going, “It could be worse.” They were saying, “What? You want your leg broken, as well?” A competition. People should remember that. We have a tendency to go, “It could be worse, or it could be better.” It’s your experience that matters.
Joe: That is so true. Suzanne, as a researcher, did you ever stumble upon something that made you go, “Wow, this is really special, I’m onto something here.”
Suzanne: Do you know, the special things I have learnt had more been talking to people with cancer. I’m a hard-working researcher, I work hard at trying to make things better for people with cancer, that’s the point of my research. The most beautiful insights I get from people who have talked to me about what they’re going through, I suppose what that’s thought me is just how different everybody is, and how special people are in terms of their ability to look at what’s happening to them. From my external point of view, I see people in very difficult circumstances who are doing such a great job, and I marvel at the ability of human beings to help each other and to look after their families. That’s a special case.
Joe: That’s really amazing. Suzanne, thank you so much for your time and everything you’ve shared here. This is really fantastic. Suzanne, if someone wanted to find your book, how would they go about it?
Suzanne: Okay, so the book is called: Facing the Tiger. A guide for men with prostate cancer and those who love them. It is published by Australian Academic Press and so you can look them up online and buy a copy. It is also listed in Amazon, in an electronic version that you can download to your Kindle or whatever. If you Google Suzanne Chamber, Facing the Tiger, you should be able to find it, but Australian Academic Press will have copies and, as I said, Amazon sells it, as well.
Joe: Thank you so much, Suzanne, it has been profound.
Suzanne: Thank you so much for your time, as well, Joe.