What You Don't Know Until You Do, with Dr Charlotte Tottman: Episode 10
Episode 10: Upfront About Breast Cancer – What You Don't Know Until You Do, with Dr Charlotte Tottman: The Iron Fist: Fear of Cancer Recurrence
Let’s be upfront about fear of cancer recurrence.
In the final episode of What You Don't Know Until You Do, with Dr Charlotte Tottman, we hear about what fear of cancer recurrence is and why it’s normal to experience anxiety about the idea of the cancer coming back. We explore the common triggers, including medical reviews, diagnosis of a family member or friend, and physical symptoms, as well as discussing the common responses in fear of recurrence, including avoidance and reassurance-seeking.
Charlotte shares her personal experience of fear of recurrence, the strategies she uses to cope, and why and how she uses her fear as a motivator.
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- Sign up to My Journey and access a range of resources on what makes breast cancer return or spread.
- Listen to our Upfront About Breast Cancer Fear of Recurrence podcast.
- Watch our What Happens After Treatment Ends? Recognising and Managing Fear of Recurrence webcast.
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Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by JT Reid.
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Ad [00:00:00] BCNA’s helpline provides a free confidential telephone and email service for people diagnosed with breast cancer, their family and friends. Our experienced team can help with your questions and concerns and direct you to relevant resources and services. Call 1800 500 258 or email firstname.lastname@example.org
Kellie [00:00:40] Welcome back to BCNA podcast Upfront About Breast Cancer, What You Don't Know until you do with Dr Charlotte Tottman, a clinical psychologist specialising in cancer distress and also a woman with lived experience of a breast cancer diagnosis. In this, our final episode of our 10-part podcast series, our conversation is going to be about fear of recurrence. Fear of recurrence is normal, but knowing that doesn't make it any easier, and it can be triggered by seemingly the slightest things. Charlotte's the first to admit that despite her professional training, she has fear of recurrence. She's going to share her story and strategies to help deal with it, and in her case, use it as a motivator. A reminder that this episode of Upfront about breast cancer is unscripted. The topics covered don't necessarily replace medical advice or represent the full spectrum of experience. Please exercise self-care when listening, as the content may be triggering or upsetting for some. Fear of recurrence, Charlotte is it universal?
Charlotte [00:01:45] The research suggests that between 70 to 99 per cent of people who've had a cancer experience have a fear of cancer occurrence. So if you're getting those sorts of stats, it basically means that, yeah, it's something that everyone feels. It's pretty hideous. And it's one of the things that I as a clinician before my diagnosis, even though I'd worked in this space for a long time, I didn't have a real understanding of what it feels like and how it's kind of just with you forever.
Kellie [00:02:21] What does it feel like? Is it obvious?
Charlotte [00:02:23] For me, it feels very visceral. So very, very raw, very scary. It's all connected to mortality. So it's the idea that you feel that there's, you know, sort of like a looming threat to your life.
Kellie [00:02:37] So does that manifest in being worried about a new cancer? Worrying about that, the old cancer's back and has spread and that you don't know about it. We hear of scans-ity,which is where all of a sudden people become obsessed with going to have scans and every sort of every nick or creek or pain can make you worry that there's something sinister happening.
Charlotte [00:03:01] Yeah, all of those things, there are quite a few triggers for I call it FCR. So in my clinical notes, he would say FCR written a lot. So fear of cancer occurrence. There are lots and lots of triggers for them. So things like when you're diagnosed, that's the first trigger for recurrence, because pretty soon after you realise that you've been diagnosed with the initial cancer, your brain does start to turn to all this treatment plan that we've got. It's all very well and I'm about to start it. And that's good. And I feel, you know, as comfortable and as happy as a person can be in that situation that I'm going to be kind of safe while I'm engaged in active treatment. But then your brain starts to go. But yeah, but what happens after that and how long will I be safe for? Will I be safe forever? What will it come back? And so, yeah, absolutely. There's a real fear from diagnosis then that other triggers are things like regular medical reviews. Every time you have to go back into that place, be that person, talk to those medical people. Your brain's engages with the previous experience of what it was like when you first felt the fear of hearing that you have cancer. Media stories, so because of the prevalence of cancer, which across a lifetime. So if you think about the lifetime prevalence of cancer, it gets up to as high as one in three people. The chances are that there are going to be media stories, you know, fairly regularly about individuals with cancer, about cancer research, about breakthroughs, about new treatments, you know, and a lot of the media stories can be very positive. But regardless, they can act as a real trigger.
Kellie [00:04:43] Is that also true of when you're watching series like fiction?
Charlotte [00:04:48] Yeah, for sure. I have said so often to my husband when we've been watching also all sorts of things that have got seemingly nothing to do with any sort of medicine. And then, you know, one of the key characters will have breast cancer. And I have said a number of times like, you know, are you kidding me? You know, can we just not have it in this as well? So, yeah, for sure, it crops up everywhere,
Kellie [00:05:12] and I'd imagine your senses are heightened, too. It's like when all of a sudden you say, I'm going to cut out sugar and sugar is absolutely everywhere you turn. When you have a breast cancer diagnosis, it's almost like you walk past and there'll be a sign on a wall saying breast cancer.
Charlotte [00:05:28] Yeah, it feels like it's just, you know, it's sort of lacking in neon lights flashing at you all of the time, the death or diagnosis of a friend or family member, and again, because of the prevalence of. And it doesn't it doesn't have to be the same cancer as you, it can be any cancer. It can even be a significant health event in another person that you're that you're familiar with. Big trigger for fear of recurrence is physical symptoms, and it doesn't have to be a physical symptom in the same way that it was when you were first diagnosed. Or it could be, so it doesn't have to be a lump, but it might be, but it can be other things. It can be headaches, it can be bone aches. It can be a change in the rhythm of your body. It can be, you know, a rash, a bump, a lump. It can be anything, really. And what is extraordinary is the brain's ability to, upon noticing that particular symptom is to instantly make the link between that and a recurrence. And it happens to me. I can get a headache which could be born of fatigue or dehydration or stress. And in an instant, I can have convinced myself that I've got primates and that happens. I'm three years down the track that happens several times a year. Absolutely.
Kellie [00:06:42] If you, as a psychologist can't separate that, what hope have others got who don't have that clinical training to know that it's how your brain is either going into protection mode or or whatever it is, what happens to you when you have that fear of recurrence?
Charlotte [00:07:03] What I have learnt is that trying to get rid of fear of recurrence is largely a waste of time. In actual truth, we don't want to turn off your fear. Your fear of recurrence is part of your body's anxiety system. It's your internal burglar alarm. So if you think about having a burglar alarm in your house, if your burglar alarm gets deactivated or disabled, what does that really mean? It means that your house is vulnerable. The burglars can get in. So if we turn off your fear of recurrence completely, it can mean that you are more vulnerable because you stop paying attention to what's going on, you stop paying attention to. If there were any changes in your body, you don't go to your medical reviews. You don't engage in healthy lifestyle behaviours because you're not worried about what happens if you don't.
Kellie [00:07:52] Become an ostrich.
Charlotte [00:07:53] You become an ostrich. And I certainly have had, you know, many clients very, you know, well-intentioned come in as you would to a psychologist to say, ‘Can you help me get rid of this fear?’ And it's like, Well, that's kind of not how it works. We don't actually want to get rid of it. We want to dial it down so that it's not at a point where it's paralysing you or swamping your life and making it hard to do other things. But we want it to be what I call Goldilocks sphere, which is not too little and not too much in just the right amount. Now it can sound a bit odd to sort of go, OK, well, we want the fear, but what it really reflects is the fact that I view fear of cancer occurrence is kind of like an unwelcome companion that you are introduced to when you are diagnosed. It's kind of like on that day you're given a diagnosis and you're also handed fear of recurrence like a gift with purchase, just not one that you actually wanted, and you are going to be living your life with that unwelcome companion. From then on, and at the beginning, what the research used to think was that fear of recurrence sort of decreased over the years. What it's more recently identified is that it kind of doesn't. It comes off the boil in the first year or two after diagnosis, but then it just kind of sits there in the background at a level and it just spikes occasionally or more frequently, depending on your situation, depending on the triggers that are going on. And as I was mentioning those triggers before. So we've got things like diagnosis, medical reviews, media stories, someone you know, becoming unwell or dying, your own physical symptoms or a new treatment phase, if you think about that's quite a lot of different triggers. And if you think in a year, there's a really good chance that you're going to be triggered maybe four or five six times in a year every year for the rest of your life. So this isn't about going, you know, I'm going to get rid of the fear I'm going to like get to a point where the fear isn't there anymore. It's about going that that fear is going to be there and probably a few times a year, it's going to get triggered and I'm going to have an anxiety spike. And that spike is going to last hours, days. It will really last more than a few days if it was a physical situation and you had to then go and have an investigation. So you needed to go and have a scan or see a medical professional. And if there was a gap between when you did the scan and getting the results that period, which could be as long as a couple of weeks, that would be a really nasty spike of cancer accounts for most people. Most of the time, the fear would spike and it will it will resolve in a few days.
Kellie [00:10:39] So with things like a TV series, you're watching a media story, maybe someone's anniversary, those things you can they might trigger a response, but you can possibly rationalise that or connecting the dots as to why you're feeling anxious. Hmm. When it comes to a physical symptom, whether it be a headache pain. Is it okay to just keep going back to the doctor every time? Or is that something that you can work on breaking either that habit or are finding ways to stop that fear being debilitating?
Charlotte [00:11:20] So what I encourage people to do is when they notice a physical symptom and they notice that they've made that link between the physical symptom and fear of recurrence. What they're doing then, is they are placing meaning on that and their symptoms. Are they going that headache means that the cancer has spread or the cancer has come back. And what I encourage them to do is to come up with two other meanings to other explanations for what that headache or what that symptom might be. So for example, like I was saying before, if I get a headache. What I encourage myself to do is to then go, OK, yep, that could be brain mets. And I'm never going to say to my clients that it couldn't be what they fear it could be, because the truth is, we don't know. We don't know. And if you have somebody out of hand just invalidating that fear and sort of dismissing it and batting it away and going, Oh, don't be ridiculous. Of course it's not brain mets. Not only is that factually like, I don't know how anybody can say that without a scan. But also for the person who's feeling the fear and who's had the cancer, it can feel incredibly isolating. And so I always say to my clients, let's let's acknowledge that first one, let's go. Yes, OK. The first meaning is the cancer is back. Give me two other explanations. And so for a headache, it might be it might be that I'm tired. It might be that I'm dehydrated to other perfectly valid explanations and we can keep going. You can come up with more than two, but two is a is a good start and that means that you've got three explanations. The initial cancer one plus two others and I talk about that is spreading your fear eggs. So instead of putting all of your eggs in one basket, which is that's, you know, that's the cancer, it's come back. It's about spreading those fear eggs into three baskets. And what that does is it dilutes the fear. It doesn't make it go away, but it just gives you and introduces this thing called psychological flexibility, which is this idea that we can consider more than one explanation for the same event. And if you can practise doing that, it gets easier with practise. So, the more that you do it, the more comfortable that you'll get with it. What I then say to people is that if you monitor your symptom sensibly for usually we say a week or two, if it starts to resolve. Good. If it doesn't resolve or it gets worse, then go and get it checked out by your paleo specialist. But the other thing that I encourage and this works particularly well for women who have had kids is that I say, maybe treat yourself the way you'd treat like a five year old or a 10 year old. So if you're five or 10 years old, came to you and said, Mum, I've got a headache. What would you do? And most women say, Oh, well, the first thing I do is probably get them to come inside, you know, be in a cooler, maybe a darker spot. OK, maybe what else would you do? Give them some fluid? Sure. Headache still there after a day? What would you do? Maybe some Panadol headache still there after a day or two more? What would you do? Might bring the GP? So you start to actually think about, Okay, how would I treat this in another person and then treat myself the same way? And what that does is it takes some of the emotion out of it gives you a bit more perspective.
Kellie [00:14:22] Is there an element of that given that your body has let you down? And perhaps in some circumstances, their cancer diagnosis came after ignoring a symptom so that so that their judgement was wrong before? Yeah, that I've been wrong before, and it was that worst scenario.
Charlotte [00:14:45] Yeah, we all come to the now through the filter of our own previous experience. So whatever has happened in the past to us is very relevant in our brain with whatever's happening now. So absolutely, if you've had a situation where you had a where you missed it or somebody else missed it, or there was a really long, messy, protracted diagnosis where you weren't heard, you felt like you were being dismissed, then you can absolutely feel quite enthusiastic about not having that situation repeated again. And I think that's really understandable. And if you've got the same treatment team with you now as you did, then they will be able to help you navigate that because you'll be able to have that conversation with them and say, Look, you know, I didn't pick it up the first time or you didn't pick it up the first time. That's part of why I'm feeling so scared and. I want this investigated. If you're dealing with different, a different medical team, it will be trickier because they won't have necessarily lived through that experience with you previously and they might not understand your level of fear. And this is where sometimes medical professionals with the best of intentions can unwittingly invalidate people's experience. Because in the medical professionals quest to reassure you and make you feel like you don't need to worry. They actually sometimes disempower you and make you feel like, you know, you're kind of like the hysterical patient. And that can be really, really damaging to those relationships. But also, it can be really damaging to the person who's going through the fear because of course, it's their life, it's their mortality. And unfortunately, there are instances where people have got it wrong.
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Kellie [00:17:05] In our last episode, we talked about the importance of exercise. Does that have any role in helping your fear of recurrence?
Charlotte [00:17:13] When I was talking before about the Goldilocks, ammount of fear sort of, as an extension of that. If we recognise the fear is along for the ride and it's going to be part of our life, it's ikind of about going, okay, well, if I if I can't get rid of it, can I make it work for me, you know, instead of like it being something that's going to hamper me, can I somehow use this force for good? And so I often recommend using the fear of cancer occurrence as a motivator and particularly around things like exercise, but more broadly around healthy lifestyle, healthy lifestyle choices. So it might be about drinking a bit less alcohol, eating more leafy greens, getting plenty of good sleep, but definitely around things like regular exercise and the reason that it's so helpful. Making the connection between exercise and fear of recurrence is because exercise absolutely categorically no questions asks makes us healthier and fitter, and reduces our risk of recurrence and other medical conditions. So we are better off with exercise. And if our brain understands that, then our brain guys, I don't need to worry so much because I am in a better state because of my exercise. So your risk of recurrence goes down, and at the same time, your fear of recurrence goes down.
Kellie [00:18:36] And as you've mentioned before, when you exercise that stress, a chemical cortisone, adrenaline reduces.
Charlotte [00:18:43] Absolutely. So your system, your whole system, is under much less pressure and is much less reactive as a result. So, yeah, exercise can be very effective both physiologically and psychologically with fear of recurrence.
Kellie [00:19:02] So what's an acceptable amount of fear?
Charlotte [00:19:07] I think if you are fearful to the point where it is interrupting or negatively impacting your ability to kind of function on a day to day basis, then we know that your fear is if you like at a at a level where it's what I'd call outside the normal range. So I really want to stress that fear of recurrence is normal. And honestly, it would be weird. I think it would be weird if you didn't have some, because then it would be like, Okay, we are whole emotional systems been shut off, and that would cause me more concern. So this is about when your fear of recurrence gets to the point. And I and I definitely have had clients over the years who have been quite debilitated by it when they find themselves almost incessantly doing this activity called, I call it, body scanning. So, you know, when you take a photocopy of a document and is that green line that kind of moves along the photocopy machine and back again, it's a little bit like imagine your brain using a green line like that to just over and over and over repeatedly scan your whole body looking for signs that there is something not quite right. You know, I have, I got a headache. How's my tummy feeling today? Have I got any lumps under my arms? What's going on with my bones and constantly doing that body scanning to the point where it's taking up time and energy that they can't dedicate to other things? But more importantly, it's leading them down a rabbit hole into things like Doctor Googling and then possibly lots of medical appointments. So and this is what does happen is that people will find because if you look, if you look enough, you will find stuff pay that much attention to your body all the time. You'll find stuff that looks weird. I found a lump on my neck earlier this year. I don't know. It could have been there for 20 years. I literally don't know. But of course, as soon as I saw it, it was like, Oh my God, this is terrible. I have to do something about these fabulous breast surgeons scanned and he said, Oh, Charlotte, you're so uninteresting.
Kellie [00:21:08] You were, as you would expect, alarmed.
Charlotte [00:21:11] Oh, so alarmed.
Kellie [00:21:13] So you got it checked out. But does that mean that every time that you find a lump or get a pain that you do go and checked it out because that's when it becomes a little bit obsessive, doesn't it?
Charlotte [00:21:24] That's right, absolutely. And I guess it comes down to things like frequency, so. If you're literally finding a lump and off to your doctor or specialist every week or even every few weeks, then you're probably at a point where it's outside the normal range and we need to be really working together on how to how to maximise your other interpretations of some of those symptoms and to maybe reduce some of those unhelpful behaviours, like things like Doctor Googling. Doctor Googling is very common. I have given up telling my patients not to not to Doctor Google because everybody does it. So I then really encourage them to be very selective in the sites that they go and look and look at, and that they only look at Australian medical government websites because that means that the information has been vetted and it's appropriate to our circumstances. So you're not reading about treatments and diagnoses and things that we just don't have available to us. But Doctor Googling can be very inflammatory, and one of the problems with the material out there is that a lot of it is very biased, and a lot of it is based on individual or small samples, rather than on really good, high quality research. And it can stoke the fear like nothing else.
Kellie [00:22:46] It is. It's addictive, too. And there also is a possibly a little bit of shame because every single medical professional will usually say, don't Google. It's usually way too light after the fact, because they’ve googled.
Charlotte [00:23:00] That's right. And and I think it's it's better to acknowledge that people are going to do it and to set some really sensible limits and boundaries and explain why that's going to be more helpful for them. But the reason that we that we engage in things like Dr Google and medical appointments and requests for things like bloods and scans that might not be medically indicated, but the reason we want them is it's a thing called reassurance seeking. So it's our brains way of getting a message back from those medical providers or those medical interventions of getting a message back that says everything's okay or. Now this sounds a bit weird or everything's not okay, but now we know what it is. What your brain's really wanting is certainty. It's not happy with the uncertainty that comes with a cancer diagnosis. And actually, this is a good time to tell my story about my best friend, Jane, who has given me permission to tell this story. She's a legend. So in the months after I had my surgery, Jane and I were talking on the phone one day and she said, I just know you're going to be okay. And I didn't say anything for a couple of minutes. Oh, not not that long. I didn't say anything for a few seconds, but it felt like a couple of minutes. And then I said to her, ‘Darling, just got to pick you up on that.’ And she said, what? And I said, ‘Look, my oncologist can't tell me that I'm going to be OK. My research in can't tell me that I'm going to be OK. So with all the love in the world, I mean, you can't either. Like, no one can tell us that we are 100 per cent going to be OK. I wish that we could, but we can't’. And so we are left with this uncertainty about whether the cancer will or won't come back, and we have to find a way to live with that. But it felt so it it did feel really invalidating to be and I know where she was coming from. And this goes back to one of our earlier episodes where we talked about the difference between intent and delivery. I know where she was coming from, she was coming from love and she so desperately wanted me to be OK. And she actually rang me back a couple of days later and she said, I've been thinking about what you said, and she said, I'm so sorry. And she said what I meant to say was, I just so badly need you to be okay. And that was so good for us to have that conversation.
Kellie [00:25:28] Now, in defence of Jane and possibly every other loving and well-meaning friend, she possibly didn't put all that much thought into that line. Because that reaction, why would she say that you're going to be fine? You're going to be, you know, you're going to be fine?
Charlotte [00:25:45] Absolutely. And it was and she was saying what she wanted to be the case and totally like, I mean, my brain absolutely understands that. And it's a really common and loving position to take. But when you're on the receiving end of it, in that moment, it can feel like, well, you know, that's all I want. That's all I want is that rolled gold ironclad guarantee that I am going to be OK, but no one can give it to me. And so I'm sitting here feeling like so isolated because, you know, the people closest to me, it feels like the people closest to me. I just so sure I'm going to be fine. And what if I'm not? And sitting with that feeling by yourself is really it's really hideous.
Kellie [00:26:36] Harking back to your example, earlier of the mother of the small child, for instance. Well. My instant thing was you'll be fine, you'll be fine.
Charlotte [00:26:48] Yes, yes, yes.
Kellie [00:26:50] So it is it is knee jerk usually. Yeah. Therefore, for someone who does have that friend who said that either, you know, last week or said it 12 months ago, do you let that go now or do you bring it up?
Charlotte [00:27:08] Look, I think it was a long time ago. It's probably more about letting it go, but I think, more importantly, it's about actually acknowledging to yourself why that might have caused you to feel uncomfortable. You might, and you might not even have been able to figure out what it was that didn't sit well with you. But what it is, is invalidation. It's a statement that was with good intent, but had the unexpected unintended consequence of invalidating your lived experience, which is your fear. And because again, you know, a lot of this stuff is not talked about. People don't realise. I mean, this stuff's got a label fear of cancer occurrence in the in the world that I operate in. It's a big topic. It has a lot of research, but you know, people out there in the real world that don't usually know about this stuff. I mean, my friends and family members, even now, a lot of them wouldn't know about fear of cancer recurrence.
Kellie [00:28:02] Not to mention those who are five, 10, 15 years on from this diagnosis today likely to still suffer.
Charlotte [00:28:12] Yes, yes, they are absolutely and probably more in silence because of that tendency in us all that the further we get away in time from an event, the more that we, you know, consider it to kind of be over. You know, it's done. It's passed. And the problem with the fear of cancer recurrence is it's like it's like the flame just keeps burning in your brain.
Kellie [00:28:39] Well, as we've mentioned before, usually the survival statistics are based on five years. Yes, it's almost like that, that big golden milestone or finishing line. Yes. And yet whilst that is the medical target, if you like or benchmark, that's not what our brain does.
Charlotte [00:29:00] No, our brain doesn't go or get to five years, and now I'm in the clear. And the other thing is that what is also common is that a lot of the research that was initially done was around sort of the first five years. Now it's 10 years, 15 years. It's talked about life expectancy in five year increments. So it's kind of like you just get to the first five years and then you start worrying about where we're going to go to the next five years. It doesn't go away, but I think for those around us, the further we get along from it, the less they are probably worrying about it.
Kellie [00:29:30] If you do get to the point where it is actually affecting your quality of life and. Proving to be debilitating more often than not, can you pull yourself back or do you need professional intervention?
Charlotte [00:29:48] I think once you're at the point where it's actually interrupting your life, so if it's at a point where you are going to multiple medical appointments and where and where nothing is coming of those medical appointments and where I would expect under those circumstances, your GP or your medical team will probably highlight with you that there might be more to what's going on than just medical concerns that maybe there's some anxiety here, which of course, this is what fear of recurrences. It's a form of anxiety. So then absolutely finding a therapist to work through it with you again, not with the aim of of getting rid of it, but of kind of coming to terms with the fact that it's part of your life and that it's it's I sometimes talk about it at the beginning. It feels like a wet blanket, and over time it's kind of like it becomes almost like a pocket where it's just kind of there and you know, it's there. And every so often it's going to flare up and you get to the point. I mean, I encourage people to to voice it, to say I, my fear of recurrence is triggered. I am having a real issue with my fear of recurrence at the moment. And when you start to do that and use that language, you educate the people around you who then go, Oh, I understand this, you know, it's because your friend got sick or it's because you watch that program and it was mentioned, or it's because you went back to see your medical professional last week for your annual review. And people can then start to understand it, and that can feel very validating and supportive.
Kellie [00:31:18] And perhaps you don't want to become an avoider, either. You don't want to avoid the TV. You don't want to avoid going out and being triggered by all things pink.
Charlotte [00:31:28] No, and that is absolutely the case if you're noticing that you are avoiding and particularly and this comes back to that that idea of turning off the burglar alarm if we start avoiding anything to do with cancer or to do with our bodies any physical symptoms, even avoiding follow up appointments. The risk is that we play, that we make ourselves more vulnerable. So we do want to have this balance where we are acknowledging the fear and responding appropriately to it. But avoidance can be. It can become its own problem.
Kellie [00:32:03] You mentioned before that you try to use your fear as a motivator. How do you actually do that? Do you make it something physical or how do you?
Charlotte [00:32:14] Yes. So I have this exercise that I use in therapy a lot and most people seem to enjoy. It sounds weird, but I think it's reasonably effective. So we do this exercise. I walk you through it in a sec, but we turn the fear into a thing so the fear can feel. And certainly in my case, it does feel if I think about the feeling, it feels very visceral. It feels like it's a really raw feeling inside of me. And so this exercise is designed to take that really raw, visceral feeling inside of me and turn it into something that I can kind of see, turn it into an object in my mind's eye. So I get my clients to think about their fear of recurrence. And now I ask them, ‘OK, well, what colour is it?’ And then I say, ‘What size is it relative to’, say, ‘the size of a car or the size of a house? How big is it and what's it made of? And can you see through it? Is it transparent or is it opaque? And if you if you tried to push it, would it move? And if you ran your hand over it, would it have a texture? Would it be smooth or spiky? And can you press into it?’, and so I get them to think about their fear and people have come up with all sorts of versions of the object. You know, some people have come up with something like a black plate. Someone came up with a pink shirt and another person said it was like a green, slimy blob thing. And mine is like an iron fist, which is why this episode is called the Iron Fist. So for those people who watch Game of Thrones, I know you didn't Kellie that for those people who did, my fear of recurrence is like Jamie's fist. It's on. It's solid, it's reasonably small and heavy and sort of powerful. And the thing that I like about this exercise is that this turns the fear into a thing. It says it's a thing. It says it's our thing. But sometimes it allows us to set it aside in our mind's eye and go ahead. I'm just going to pop you over there for now. Don't have to be in me all the time.
Kelly [00:34:24] So you put it to this side of where?
Charlotte [00:34:28] My Brain
Kelly [00:34:29] Does that work? I know you're the psychologist and everything, but that just sounds really weird to me. I can't. Let me just put my fist through the side of my…
Charlotte [00:34:39] Brain to the side of my brain. Yeah, I mean, I think that's a good example of why. What I said earlier, which is that I didn't know what this felt like until I lived it. And so for someone who hasn't lived it, it probably does sound very weird.
Kellie [00:34:54] Ok. So is that like saying so, Iron Fist? Step aside, I'm going through.
Charlotte [00:34:59] I'm a little bit. It's mostly about objectifying and and therefore separating myself. So instead of feeling perhaps overwhelmed like I can't get away from it, it just allows me to have a bit of perspective and to be able to stand back and see it from a distance and sort of talk about it and go, you know, gosh, today it's really it's really big, it's really shiny, it's really there.
Kellie [00:35:27] So I'll be like a big black shadow that you know, or big cloud that comes over you where you can't see the wood for the trees, if you can compartmentalise.
Charlotte [00:35:37] Yeah that’s right. That's right. You can see it. And therefore, if you can see it, you can stand back from it. It gives you a sense of like, Well, I am not my fear. And that can give you a sense of control, and it empowers you to not feel so vulnerable with that fear.
Kellie [00:35:54] And that concludes this series of Upfront About Breast Cancer What You Don't Know Until You Do with Dr. Charlotte. Thank you, Charlotte, for not only your professional insights, but really putting yourself out there and sharing your personal experiences. And there were some doozies in there. There were some. There were some doozies. But I have absolutely no doubt your generosity in in sharing those experiences will make many others feel less alone, but also give them some real tools and practical tips in how to move forward after a diagnosis.
Charlotte [00:36:32] Thanks so much, Kellie. I have so enjoyed doing this series with you. It is my absolute privilege to sit in this chair and share my experience. I do hope that exactly as you said, that it may help people feel a bit less alone, maybe a bit more understanding about what they've been going through and hopefully give them some strategies that they can use. I'm very used to throwing out lots of strategies and then falling on the floor, but hopefully there might be one or two in there that will work for individuals.
Kellie [00:37:04] And don't forget if this episode or any of the episodes in this series have helped you, why not share it with someone else? And in the show notes, is a survey. It takes a few minutes, but it is so valuable in helping BCNA tailor content that's relevant. And if you're looking for information specific to your diagnosis BCNA’s My Journey will provide all the information you need and nothing you don't, you'll find it at my journey dot org dot au. For connection with others who share your experience BCNA’s online network is there 24/7. Join through the BCNA website this series of Upfront About Breast Cancer what you don't know until you do with Dr. Charlotte Tottman was proudly brought to you by JT Reid. Our theme music is by the late Tara Simmons, who lost her life to breast cancer. We're grateful to her family for allowing us to use her music, and thanks also to our wonderful producer Jane. We could not have done this without you. I'm Kellie Curtain and thanks to Dr. Charlotte for being upfront with us and to you, our listeners.
Ends [00:38:15] Thanks for listening to Upfront About Breast Cancer, What You Don't Know Until You Do with Dr Charlotte Tottman brought to you by the Breast Cancer Network Australia and proudly supported by JT Reid.