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 helpline@bcna.org.au. Welcome 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.
Kellie [00:00:42] Welcome to another episode of the podcast. I'm Kellie Curtain, and this is Upfront About Breast Cancer. What You Don't Know Until You Do, a series with Dr. Charlotte Tottman, who's a clinical psychologist specialising in cancer related stress. In today's conversation, Charlotte, who has a lived experience with breast cancer, talks about her decision to have a double mastectomy and not to have a breast reconstruction. The physical change was dramatic and immediately obvious. The emotional impact took a little longer and caught her by surprise. Through her experience, Charlotte's going to explore the triggers and responses of body image and offer some ways to reframe our self-image in the mirror and mind. A reminder that this podcast is unscripted, and the topics discussed are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical option. So please exercise self-care when listening, as the content in this episode may be triggering or upsetting for some. Welcome back, Charlotte Tottman.
Charlotte [00:01:47] Hi, Kellie.
Kellie [00:01:48] This is a big episode. It's about body image. And yeah, that's big, especially for women. It's big. Yes, huge, big, at any stage and all stages of women's lives I’d imagined, but certainly when it comes to a breast cancer diagnosis and what for many changes their physical body. So can you talk us through your experience?
Charlotte [00:02:17] I know that you've already given a trigger warning and I'm just going to double down on that. This is probably of all of our episodes, the one that certainly triggers me the most. And I figure if it's triggering me the most, then it's pretty likely it might affect other people. So if you do feel that the content in this episode is rattling, then please do reach out and connect with someone that you trust afterwards and just have a bit of a debrief talk through how you feeling and what might have been the stuff that's really got on the skin today. So, body image is really big and it's bit separate to cancer. More than the research tells us that more than 90 per cent of western women are unhappy with their weight and shape. Just generally nothing to do with cancer, just generally. So it's very common for women to already feel uncomfortable with some parts of their body and what happens with a breast cancer diagnosis and treatment. Often, is almost like a lightning rod. It gives you something to really focus on something very tangible to kind of notice about yourself and be unhappy about. And often it's in the form of things like the loss of breast tissue scars, but it can also be lots of other things. It can be hair loss on your head, but also on other parts of you, on your face, in other parts of your body. It can be things like skin and nail changes, which can change our appearance and how we feel about ourselves. It can be weight changes, so there's a whole lot of different ways that our body physical form is affected by cancer treatment, and that then gives us something, I guess, to really see and feel differently about. As you said, I made the decision to have a double mastectomy, and I think a lot of people might assume that body image stuff crops up kind of further down the track. You know, when you've got through a lot of treatment and you might be then dealing with the next chapter of your life and having to reconcile the what might be permanent changes or trying to deal with things that might not be permanent. But for me, my body image stuff started pretty much as I came out of recovery from the surgery, and I just want to paint a bit of a picture because I think it's relevant. It was very relevant to me and it might be important for other people listening. So I came out of theatre and it was about 9pm when they brought me back to the ward and my husband and some of the kids were in the in the room and I was still high on opiates. And I'm a very by nature. I'm a very I'm a not an avoider, I'm a confronter. So I can remember, even though I was high lying in the hospital bed and as soon as I got back into the hospital room, I said, ‘Right, okay, well, let's have a look’. And so I'm lying there in my hospital gown and I threw off the bed covers and I pulled back my what do you call, a hospital gown, and I had a good look at my chest, and all I could really see was just a very flat kind of surface. Now bearing in mind, I was lying flat on my back. So and it was just after surgery, so there wasn't time for any bruising or swelling. My dressing was at that stage just, like a single line of tape, white tape about an inch wide and it went one, like a Band-Aid, but it went from one underarm right across my chest to the other and around as if I'd been cut in half. Like the girl in the magic show. And so I looked down and I just saw this really quite neat, clean, not bruised, not swollen situation. And I have to say my first thought was, that's pretty great. Now that sounds a bit weird because of course, you know, four hours before there'd been two breasts there. But I think I was, you know, expecting it to be awful. And what I saw was it all looked great, and I remember being quite positive and saying like, and I was like, you know, I'm pretty chuffed and I was like looking to the family as if, like, you know, this is this good. Yes, exactly that. Quite neat. Now the reason I think that's important is that's kind of what that's my that was my starting point. So my starting point was this is good. Now that's quite a place to then shift from to where I, you know, later got to, which is this is not so good. And I'm not sure how it would have been if my starting point had been maybe this is not so good, wouldn't have been so far to fall if you get what I mean. So the next morning..
Kellie [00:07:02] I feel the fall coming for you, Charlotte.
Charlotte [00:07:04] Thanks. Yeah, you're right there. So the next morning I got up and I walked into the little hospital bathroom. And suffice to say, it wasn't so pretty then it wasn't so neat then. And of course, the swelling had started and the bruising had started and I was standing up, so I wasn't lying flat on my back, which of course, you know, just makes everything kind of look better. And so I guess then it was my first inkling that, okay, maybe this isn't quite what I thought. So then we fast forward through the next few weeks where I had a post-op bleed in a seroma that had to be drained and the type that I was bound up with to stop the bleeding. My skin reacted to the tape, so we took the tape off. The skin came off. So it was all pretty hideous. But I knew that stuff was all temporary. My scar has healed very well and we're now three years down the track and apart from a little bit of keloid scarring, I've got a couple of inches of that. But really, you know, my scar is very good and I think my surgeon would be pretty happy with his handy work about two or three months down the track. I was looking at myself front on in the mirror and I and I do encourage my clients to not engage in being what I call gaze avoidant. Gaze avoidance is where you don't allow your gaze, you're looking at yourself, you don't allow yourself to do that. You sort of avoid it. And being gaze avoidance quite tricky because you can stand in the mirror and look at yourself and think that you're looking at your breasts or your scar where you escort your breasts were actually you kind of looking over your shoulder almost like you're not really looking, so you're kidding yourself a bit. Anyway, I was looking in the mirror. What I could see was I had these weird sort of wings under my arms. It sounds so it's hard to describe them at the back the way. Oh no. So if I was looking for an answer like just where on the side of my where my breasts used to be on the side under my arms, it's the way I used to describe it was as if, you know, if you got a wet towel and you hang it on the line and it's sort of like would be at a point that you take the tail off when it was dry and they'd sort of be like a line and a point at either side where it had dried. It was kind of like that with my skin, where I kind of had these two sort of pointy wings that protruded from the side of my body was quite odd and I'm reasonably lean. So there wasn't much other flesh to kind of like rounded out, I guess. So that was making me feel pretty weird. Like, I just sort of, you know, instead of having straight lines from my underarm down to my or straight lines or sort of smooth lines, I sort of had these weird points and I didn't know what they were, and I didn't know if that was normal after a double mastectomy. And so when I was having one of my follow up reviews with my surgeon, I just said to him, ‘What about these things, these wing things?’ And he said, ‘Oh yeah, we can get rid of them’. And I was like, ‘Oh.’ And he said, Yeah, we can do a bilateral wedge lumpectomy. Say that when you're drunk (laughs)
Kellie [00:10:06] and what, no one thought to mention that you didn't have to put up with those?
Charlotte [00:10:10] Now I know, and I sort of wonder, what if I'd never said anything? I mean, because you know, you're worrying about a few other things other than, you know, that stuff. But anyway,
Kellie [00:10:19] you're busy being grateful for being alive and
Charlotte [00:10:21] totally being busy, being grateful for being alive and so, so grateful that I had a double mastectomy. Just so incredibly grateful anyway. And I was like, ‘Okay, so can you do that?’ Like, I didn't know what this thing was, and I didn't know if he was the guy. And he's like, ‘Yeah, yeah, I can do that.’ So suddenly, you know, off of going into an appointment where I don't know what I thought I was gonna be talking about what it wasn't that I came out with an appointment for another surgery, which is great, but also it was another surgery and cumulative.
Kellie [00:10:50] Oh my gosh.
Charlotte [00:10:51] Another surgery, another surgery, and I'm still that patient. I'm still that person. I've got to be back in that waiting room, being that person back and say that same anaesthetist, you know, all that sort of stuff. I mean, so it was kind of, you know, as that conflicted stuff of like, again, you know, I'm grateful, but like, seriously, you know, are you kidding me? So that surgery happened in the December I was I was diagnosed in the July. The first double mastectomy in August, and then that's later surgery, the bilateral wedge lumpectomy in December. So when I had that surgery, definitely I felt a lot better that I had got rid of these weird wing things. It did feel cleaner. I think that I thought that I was pretty good and I only really came to understand that I'm not as good as I thought in the body image department, probably in the last year. So I'm now three years down the track..
Kellie [00:11:49] You’re still struggling with body image
Charlotte [00:11:50] But I'm still I'm still struggling with body image and I find it really hard to even say that I feel I'm getting better at saying I have body image issues. But even that is and this is from a person who doesn't consider herself to be an avoider. But I have fitting room phobia. I definitely have body image issues and I am working on them, but I'm settling down. Not fast.
Kellie [00:12:16] Can I ask you why you decided against having a breast reconstruction?
Charlotte [00:12:20] Yeah. Look, it's a big conversation, and we might not be able to do it justice completely in this episode. I will say it was multifactorial, so there were quite a number of things that led to it. One was because at the time we were making the decision about the double mastectomy, there was a reasonable hypothesis in my medical team that my breast cancer may have been genetic. And so if that were the case, that would have placed me at higher risk for recurrence and we wanted the most surefire way to protect me. So that meant that I wouldn't have skin sparing nipple sparing surgery that would facilitate a reconstructive process that was one beat. The other is that for me personally, we worked out that having had four children, my breasts had kind of fulfilled their responsibility, if you like, from the breastfeeding side of things. Robin, I had late night middle of the night conversations where this is what happens when you have two psychologists where we're trying to work out the meaning of breasts. And for us, like, what were the point of my breasts? What we came up with was that they were really important for sensation in an intimate sense. They were really important for sensation and that reconstructive surgery wasn't going to give me sensation. So it's kind of like, Whoa, I'm going to have to go through a whole other stuff to kind of not get back the bit about my breasts that I really want. So that was one bit. The third bit was that granted, I see like a biased population, I see people who are struggling. So I don't see all of the people out there who are delighted and thrilled with excellent reconstructive results. I'm more likely to see people who have had a harder time where they've been complications or infections or multiple surgeries that weren't anticipated. So I guess there was a bit of that floating around in my mind that do I want to take that risk?
Kellie [00:14:21] A bit of a skewed view because there aren't there are lots of wonderful breast reconstructions, in your line of work, it's it's likely that you're going to get the ones that haven't gone.
Charlotte [00:14:31] I also didn't want to take more time out of work. Any reconstructive stuff was going to take a lot of time for at least probably another year, and I didn't want to do that. And the other bit for me was about authenticity. I'm not a very girly girl. I hardly wear makeup. I hate the hairdresser. For me, the idea of something artificial just wasn't going to ever kind of sit for me now. That's not to say that it's that way for other people, not at all. This is a very personal decision, and it's very much horses for courses. But for me, it felt like reconstructive work just wasn't going to be a good fit for me.
Kellie [00:15:07] Hmm. So once you had made that decision and you've had the surgery and you looked at your chest standing up for the first time, did you feel sadness?
Charlotte [00:15:23] Yes. Yes, I did. Yes, I did feel sad. It felt incredibly real and very permanent.
Kellie [00:15:30] Even though you've said in other episodes that you weren't particularly attached or you didn't think you were particularly attached to your breasts and they weren't a big part of your identity or your physical?
Charlotte [00:15:41] Absolutely. Yeah, that's right. Yeah, I had tiny breasts, and so I think I had this idea that, you know, if you have tiny breasts and you take away the tiny breasts, it's not like taking away very much. That was a really dumb thing to think. But I think the other thing that that I recognise now is that when you're in the throes of diagnosis in those early days when you're having to process the reality of a cancer diagnosis and deal with the fear and that idea that there's something growing inside you, you just want it out. And the idea that the double mastectomy was going to get it out and I was going to feel a lot safer. That's where my focus really was. My focus was really on that and I don't regret any of it. I would do exactly the same thing again. But it was a little bit of a shock on that that morning to just sort of go like, Okay, this is this is my body now. This is the new me. And it's pretty confronting.
Kellie [00:16:38] Because your whole view is different, too, because I'd imagine all of a sudden you can see your stomach.
Charlotte [00:16:45] You totally can. It's a very weird thing that you don't realise, even if you've got little breasts, you don't realise that when you look down, you know, I think probably all women, when you look down, when you've got breasts, you see your breasts and you've got a tummy below your breasts. And again, I'm reasonably lean, but you know, my tummy was bigger than I thought. And I didn't much like seeing it. I still don't much like seeing it, and it does. It really does give you a completely different perspective point of view on your body that you've got very used to seeing from a certain angle with certain other things in the way. So it yeah, it's a big adjustment and information processing and adjustment take time. And as I've said, I'm three years down the track and I'm still adjusting
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Kellie [00:18:07] Apart from the fact that you can no longer visually see a breast, talk to me about the sensation, though, that you would still have that numbness. What do you feel even though the breasts aren't there?
Charlotte [00:18:21] So I have this weird feeling that I researched because I was curious as to whether anybody else felt, and I have this thing called Iron Bra Syndrome, which feels like I've got a metal band around my chest, sort of at the at the level where my nipples used to be as if somebody kind of ratcheted it up. And it's just like that 24/7. Like, it's like somebody's got this really incredibly tight steel band around my chest. Now what I understand that to be is largely numbness from where all the nerves were cut for the double mastectomy. And so there's a lot of scar tissue and there's a lot of dead nerves there. And so you can sort of poke me. I'm actually not kidding when I say that you could poke me with a skewer in a lot of my chest and I just wouldn't feel anything. And I say that because that's what happened when I was being drained. So I know that to be true. And so it's a very odd sensation to describe because it's not pain, but I would say it is. It is discomfort and it is there 24/7. There is not a moment of my life when I am not aware of that feeling, and that in itself is a bit of a trigger because, you know, before I say sorry, this wasn't a bit weird, but the times I'd be acutely aware of my breast would be when the weather was cold and my nipples would get hot and I'd feel my blouse rubbing against my nipple or something like that. That's when I'd notice my chest or my breast. Whereas now there's this sort of like in the absence of my breasts, there's this acute awareness of where they used to be almost all of the time.
Kellie [00:19:54] And as if that isn't enough to deal with, you also have the outside forces and their reaction to your changes. Talk us through them.
Charlotte [00:20:06] Yes. So this brings me to a story which I tell because I think sometimes around body image, there can be the idea of, like sometimes feeling so self-conscious and maybe other people might respond to your self-consciousness and sort of be like, No, no, no, nobody will notice nobody, nobody will care or judge or whatever. And you know, frankly, that's just not true. Now, the truth is that the majority of people probably won't notice or judge or comment, but I had this really interesting and unpleasant experience. A while ago, we were post double mastectomy. We were we were on holiday. We were at an at an airport. The weather was warm. I was wearing a pair of shorts and a black singlet and you know, we were on holiday. So it's nice and relaxed, had a little bit of tan and I was feeling pretty good about my body. I think I was feeling relaxed. I was wearing clothes that kind of felt comfortable. I remember thinking that day like, you know, not too shabby. And we're standing in this queue and about probably five metres away in the next sort of snake of the queue. I could see this couple, maybe early 30s. And I just, you know, I happened to be looking at them when the male looked at me and looked me up and down and he turned to his female partner and he said in a way that caught her attention. So she then looked at me too. He said, Is that a she? And I just sort of felt like I just wanted the Earth to open up and swallow me. And I didn't react, and I didn't I mean, I didn't I just didn't do anything, I actually, I mean, even as I'm telling this story now, it's like being gobsmacked that it even happened. I'm pretty. My brain works pretty well in the moment. It didn't work at all, and I just kind of stood there and I couldn't really think to do anything. I did decide not to tell Rob because I knew that he would be. He's a very nice, calm, kind man, but I knew he would be very protective of me, and he probably would react, even if he just said something like ‘Pull your head in mate’ or whatever. But I didn't say anything to him and I told him later. And yes, he confirmed that he probably would have said something.
Kellie [00:22:30] And in that moment, what happened to you? It sounds like a little piece of you died.
Charlotte [00:22:36] It was really full on. I just felt so vulnerable and especially again off the back of feelings I could. It just sort of like flipped me in the moment. I think I'd been feeling, you know, a little bit like I'd got my life back a bit, you know, I'd been I'd been in a good place. I'd had a holiday. I was looking good, feeling good. And then it was like, Oh, that's right. All of that horror has happened. And it's not just me that knows it. And of course, I mean, I don't know what the guy was thinking, really. When he saw me, I obviously thought I was 80.
Kellie [00:23:12] It confirmed that fear, didn't it?
Charlotte [00:23:16] And like, you know, the idea that no one would notice and that no one would judge and no one would say anything, it's like, Whoa. There you go. There's your very worst fears confirmed that I am now viewed completely differently to how I ever would have been. So this is in no way to imply that I have any issue with transgender individuals, and it's not actually about gender or sexuality. It's about the fact that in that moment I was feeling really vulnerable, really aware that I was being judged by somebody else and maybe someone who was drawing a really inaccurate conclusion from what was a really serious health situation.
Kellie [00:23:55] I imagine that inconsiderate, flippant comment from an external force could also be the same for someone who might have had a breast reconstruction. And they've gone, Oh, look at those new set of boobs. They look amazing, better than the ones that you had before. And all of a sudden it's like, I've had you kidding me? Yeah, yeah. Are you kidding me? Absolutely.
Charlotte [00:24:22] Yeah, yeah. And I think just that idea that, you know, we are so much more than what we look like. And yet I was in that moment, I was totally reduced to what I look like, and I had no control. I had no right of. Not easily, no right of reply. No way of being able to, you know, correct what was clearly some unusual interpretation of what I look like. I felt very vulnerable.
Kellie [00:24:51] Those sort of things are bound to happen, I guess. Yep. And you don't have control over them. So from a psychologist's perspective, how do you offer a way through?
Charlotte [00:25:05] I mean, one of the reasons that I tell this story is because it is about recognising that this stuff does happen, and it's like any big thing that happens in your life. People are on some level, people are going to observe and possibly judge and possibly say, and it's about then going, ‘Okay, well, if that's going to happen, what do I do with that? You know, how much do I let it affect me? Does it matter what that guy? I don't know who that guy was. Don't know his name. Don't know where it comes from. Never going to see him again in my life. Does it matter?’ You know, sometimes it's finding, where do I? Where do I place that? Do I allow it to kind of like, take hold? And we talked about this in the last episode about how much power am I going to give that sort of stuff over me? It is also about being real about this stuff and going, you know, there is a bunch of stuff out there that I can't control. So, do I want to spend a whole lot of my time and energy, you know, focussed and spent on that? Or do I want to invest in the stuff I can control? And with body image that is very much what I do, counsel my client and myself is to like, Okay, focus on what you can control. I don't know what anybody's going to think of me when they look at me and really, really at the end of the day, does it really matter? It's much more important, like what I think about myself. And to some extent, you know, there are some intimate others. You know, it matters to me what Rob thinks about my body image and maybe a few other very close people in my life, although I don't know. I don't really think so. It's probably just me and Rob.
Kellie [00:26:32] OK, so something like that, it's fairly random and you'd like to think won't happen that often with body changes that come with a breast cancer diagnosis, whether it's, as you've mentioned, scar tissue. White hair, a break on a flat chest. What about when used in the everyday when you go into a dressing room, when you're getting dressed every day? That's something you do have to think about constantly. How do we reframe that? And indeed, is that an issue?
Charlotte [00:27:05] Yeah, absolutely. And it is an issue. And the reason it's an issue is because over a lifetime say up until the moment that you're diagnosed or have treatment for breast cancer, we all look at our image in reflective surfaces. So it might be a mirror, it might be a shop window, it might be the duco of your car, but there will be multiple times a day for each of us. Wear it with intention or not. We look at ourselves in a reflected surface, and each time we do that and I mean even more so now with selfies and phones and zoom, each time we do that, our brain takes like a little photograph of our image and it pops that image in a file in your brain and the files called. This is what I look like. So over the years, each of us would have hundreds of thousands of images in a file in your brain titled ‘This is what I look like’. And then you have cancer treatment. And when you look in the mirror image and you see yourself after treatment, the image in the mirror doesn't look the same as the images in your file in your brain that say, this is what I look like. So it sets up this thing called cognitive dissonance, which is where you're trying to hold two ideas in your head at the same time. So you've got one part of your brain going. This is what I look like, and then the other part of your brain is going, No, no, this is what I look like. And the problem is, is that because you've got literally hundreds of thousands of images in your memory bank of what you look like, it's going to take time and lots of new image taking to build up your new library. Also titled ‘This is what I look like’ for the balance to shift for your brain to start to go okay, I now understand that this is what I look like now and for the cognitive dissonance to settle down. But that is a function, a lot of a function of time, but also a function of how often you're prepared to look at yourself in a mirror. Because as I was talking about before this, this phenomenon of avoidance and gaze avoidance, which is that we stay away from the thing that makes us feel uncomfortable. So, you know, I feel uncomfortable about my chest. I won't look at it. What that does is it prolongs the amount of time it takes for the cognitive dissonance to settle down because you actually need to look at yourself over and over again to start building up the new library of images in your brain so that instead of like, you know, taking five years for you to get 100000 images, you need it to take a year so that you can start to, like, challenge the old version of what you used to look like. That makes sense.
Kellie [00:29:50] It makes sense, but it sounds tough.
Charlotte [00:29:53] It is really tough. And for people who are, you know, without realising it sort of feeling a sense of relief or comfort in not looking at themselves when their psychologist says to them, Jeez, you know, I want to set you some homework and I want you to spend five seconds. I mean, that's quite a long time. I want to spend five seconds looking at yourself in the mirror. It's not surprising a lot of people go, Yeah, I think so.
Kellie [00:30:17] A lot of women don't like looking at themselves in the mirror at the best of times. Are you talking naked in the mirror?
Charlotte [00:30:24] I'm talking naked in the mirror, and I'm talking, actually looking at it. And I and I do this in my daily practise is I stand in front of the mirror. I put my head, my hands up on my head. I'm really focussed on looking at my scar on my chest, and I just stand there and I just I just look at it. It sounds weird, but I've done that for a long time and it helps, you know, this is from the person who's still dealing with body image. I don't like to think what it would be like if I if I didn't do it at all. But I also encourage myself and other people to touch, to touch your scar, to touch your areas of your body that you feel uncomfortable with. Because again, we can be avoidant in more than just one way so we can be touch avoidant. We can be gaze avoidant and we can be this other thing third person avoidant, which is where we don't let other people see us. We don't let other people touch us. And that obviously sets up other issues in intimate relationships and so on. But it also means that we kind of cocoon ourself in this place where it's like nobody gets to see what's really going on here.
Kellie [00:31:22] Wow.
Charlotte [00:31:23] Yeah, it's big.
Kellie [00:31:25] Talk to me about the body image around scars and how you can reframe instead of them looking like ugly.
Charlotte [00:31:31] Yes. So this is just a little cognitive strategy. And it can be very effective. It's just using language differently. Language is important because it reflects our thoughts. And if we think a little bit differently, we often feel a bit different. So if we view the changes to our bodies through surgery, which might have left marks on our skin if we instead of viewing those marks as scars, if we start to view those as lifelines, it can put a different perspective on their value and on their meaning. And I think I really like that and that was actually something that a client a long time ago. She sat in front of a mirror and she would practise looking at her scars, and she thought, they're not scars. They're my lifelines.
Kellie [00:32:14] So is it getting easier for you?
Charlotte [00:32:17] I thought it was. What I worked out was that I developed some coping strategies that are still what I call adaptive coping strategies. So things like I shop online, I buy most of my clothes online, and I realised that I wasn't doing as well as I thought when I went into a big shopping centre. This was probably last year, and my husband doesn't like shopping. And on this particular day, he said, let’s go shopping and I was like, ‘Who are you? But OK, sure, let's go shopping’. And I was all jazzed up with the idea of like, Well, this is unexpected. So off we go. So we went into a shop, a dress shop that I like, and I did what I always would do historically, which is I grabbed about four things off the racks and I went into the fitting room and Rob was sitting by himself with his Kindle, like reading and, you know, not having anything to do with it, blissfully unaware of what was going on. And I went into the fitting room and like I had to piece together later, kind of what happened because it wasn't immediately obvious to me. I knew I felt really uncomfortable, but I tried on a couple of things and that didn't fit and they didn't look any good. That's probably not all that unusual. I don't think it was the clothes. I think it was where I was. I think it was also probably the fear that somebody might just pop their head in to the fitting room as sales assistant sometimes might. But I was really rattled and I didn't try them all the clothes on. I just put my clothes back on quite quickly and exited, and I went out to the middle of the shop and Rob sort of looked at me in surprise. I was like, What are you doing back so soon? And I and I said, ‘nothing, let's go’. And he's like nothing? And I was like, No. And so we got out into the bigger part of the shopping centre and. All I wanted to do is flee, and this was like a fight and flight response in me, it was a big anxiety spike and I was feeling really light-headed and dizzy and wobbly. But I was also in this ridiculous idea of, like my husband has said, we're going shopping and he never says stuff like this. So I need to. I need to. I need to keep shopping. So I didn't say anything about how he's feeling, and I must have still looked pretty much the same. And this is one of the great difficulties psychological stuff is. It's largely invisible. So Rob didn't know that I was really starting to melt down on the inside, and I wasn't together enough to be able to say it. And so we keep walking around this big shopping centre and I walk into another store and he again sits down outside. By this stage, I really was in a bit of a daze and I walked around the store and I picked up a few pieces. It was a big store and I could see the fitting room kind of in the distance. And I just remember standing by myself in the middle of this big store, looking at the fitting room from a distance and feeling quite unable to move. And then I just put the clothes down on the floor. I didn't even go and put them on a rack or I've never done anything like that in my life. It was quite odd.
Kellie [00:35:16] What do you put that down to? Is that was it too soon?
Charlotte [00:35:20] Well, no, because it was like two years down the track. I think that I had not thought about it. I had assumed I was fine. I had, I think, an anxiety response, born off the fact that I felt very vulnerable. I felt really vulnerable. And so I had all the what we call somatic symptoms, which are the physiological symptoms of anxiety where I felt light-headed and dizzy and I couldn't think and I felt sick and I was in a bit of a daze. It was like almost like an out-of-body experience. And, you know, it's not like I have them routinely. I just it was all very odd. But it didn't end there. So I walked out of the shop and again, Rob looked at me like, you know, what is going on here? You know, like, in a loving way, but kind of like, you know, we came here to shop and you're coming out empty handed, and I was just like, ‘Yeah, can we go?’ So we did. We left. And again, he wasn't really still aware of how I was feeling, and all I felt was just completely like upended like a loosely connected string of rubber bands. I just felt really rattled. That was probably by that stage middle of the afternoon, and the feeling just did not settle down. That's interesting because there weren't any more triggers that day, but we went out for a meal that night. We were away from Adelaide. We were in Melbourne and I was still feeling so incredibly rattled and I hadn't put the pieces of the puzzle together. So I can tell now well what happened, but I was still in this state of like I should be. I should be fine and I'm not fine, and I don't understand why. I'm not fine, but I can't make sense of this. And so we're sitting at dinner and we had a glass of wine and an entree, and then I just I couldn't eat and I couldn't drink. And I just looked at Rob and I felt so panicked and I said, ‘Darling, I'm sorry, can we leave?’ And he looked at me and was like, ‘Sure’. And so we left and we were in the CBD of Melbourne, and we walked five kms back to where we were staying in the dark with the tears, just sheeting down my face and we put it together then and we worked out what had happened, and we worked out that it was when I was in the fitting room and I was in my undies, and the lighting is awful. I think most women know that lighting and fitting rooms is notoriously awful, and I was probably expecting just like I usually do, to put clothes on. If I put four or five things on that, one of them would look half okay. None of these things happened. I felt really vulnerable. I felt like somebody might come in and see me, and then I'd have to maybe explain why my body looks the way that it does. So there was all of that piecing it together, but then there was a second part to it, and that was kind of almost like the crushing realisation that three years down the track, things were really as good as I thought they were. And that's the bit that actually makes me feel a bit upset now is just this idea of like, you know, you get back to your life and you think you're okay and you are in lots of ways, you really are in lots of ways. But then you just realise that this is still pretty raw and it's still really hard.
Kellie [00:38:26] And it's forever.
Charlotte [00:38:28] and it's forever. And it's not you can't undo. I mean, sure, I could go and have recon that isn't going to change everything I've been through. It isn't going to give me back what I what I had. That's not the point of this. The point is that this is the physical reflection of everything I've been through and the fact that it is a permanent change and I am not the same person I was before diagnosis and I'm never going to be the same person. And even though this is the stuff that I routinely talk about and counsel my clients, you know, I have taken a really long time to process that and come to grips with that. And it's. It's still a work in progress. What I worked out was that the fitting room experience for me, the reason that it was so problematic. And by that, I mean that what it felt like it fell out. My brain just tipped. I couldn't get my equilibrium back and I also couldn't figure out what was going on. I knew I fell off. I knew something had kind of happened, but I couldn't figure it out and that was very bothersome. But what it was another episode, another type of cognitive dissonance, which is where you try and hold two ideas in your head that don't fit. So one idea was, I'm safe in this fitting room because, you know, my brain historically has always felt safe in a fitting room. Why wouldn't it? And then the other part of my brain was going, I feel so vulnerable in this fitting room. And so my brain was really struggling to match those two bits of information that just didn't fit together. And the bigger bit was that I hadn't seen any of this coming. If I'd seen it coming, I probably wouldn't have gone into the fitting room, but I didn't see it coming. And what that reflects is that I was not aware I was not confronting the fact that I still have body image issues.
Kellie [00:40:07] Three years on, the world's moved on. I mean, there's not many, too many people checking in saying, ‘How are you feeling today, Charlotte?’ How does someone in a similar position to you, whether it's 12 months, four years, 10 years? How do you guard against those triggers or prepare for those triggers? How can we protect ourselves?
Charlotte [00:40:30] I think that it is. Again, it's about awareness. So it's about starting to really identify what are the triggers for you. And there are a lot of triggers. They don't all affect everybody all of the time. But the big ones are around being naked or near-naked. So things like, you know, going to the beach, going swimming, physical exercise where you're wearing, you know, tighter clothes, where there's a lot of mirrors going to medical appointments or personal care appointments. So things like massages, I'm very limited and thoughtful about where I will go to get a massage because I don't want to have a conversation about my chest every time. I don't mind having it, maybe once or possibly twice, but not. I don't want to have to do it every time. Social media is can be a real trigger. You know, this hollow stuff out there that we can't control what we say, how we see it? Certainly, I love Instagram, but it's got a lot to answer for in the body image space. Intimacy in sex is a big trigger and obviously things like shopping for clothes. I I found my own interesting trigger only in the last summer. And so this is the other part of my own experience is a bit unusual. Is that at home, I think I'm completely relaxed. I get around naked. I am. We're lucky enough to have a pool and so I when I'm swimming, I just wear bikini bottoms. And the reason I don't wear a bikini top is because I worked out that if I were to wear a bikini top or a crop top, which I started wearing after surgery, I'd get a tan line. And weirdly, the tan line is a trigger because the white space which covers my scar. Is actually like the shape of, you know, the bikini top that you would wear if you had breasts. And so I worked out that actually for me, I do much better if I just get if I wear a bikini bottom and then the rest of my body gets tanned evenly. Now that sounds kind of odd in the sense that, you know, how can I be so triggered in a fitting room and so comfortable? But I think it's about context. It's about environment. I'm in control in the home kind of setting. And also, there aren't very many people there, whereas I'm not in control in those other environments. So I think it's about understanding what your triggers are. And therefore, if you know that they're coming, you can. You can be strategic. You can take steps to make sure that you can protect yourself the best you can.
Kellie [00:43:05] And I know it sounds a little bit Pollyanna, but do you look for the things that your body can do rather than the things that your body can't?
Charlotte [00:43:13] Yeah, I mean, I'm a big advocate for changing your focus, so it's a cognitive shift. So instead of looking at like what your body looks like, it's about not what my body looks like, but what my body can do. And to that end, linking that with being physical movement and in my case, a lot of exercise. And that's because when we exercise, we get a whole lot of positive outcomes. We get the psychological hit from things like endorphins. We get the stamina, we get toned. But we also send ourselves a message, which is I am not broken. I am able. I am investing in myself, in my well-being and in my future. So there's a lot of positive messages that we get reinforced from things like exercise and focussing on what our body can do rather than what my body looks like.
Kellie [00:44:02] Well, as we said at the beginning, it's a big topic, isn't it? Body and the mirror, and not just the physical mirror, but the picture that we have of ourselves in our mind. So get out there and start looking at the new version of you. Build that photo album,
Charlotte [00:44:19] Build that photo album.
Kellie [00:44:19] Thank you, Charlotte. And if this episode has helped you, why not share it with someone who might also benefit? You might like to subscribe to Upfront About Breast Cancer to ensure you never miss an episode and leave a rating and a review. There's also a survey in the show notes your feedback assists us at BCNA, to create content that's relevant. BCNA is here for you at every stage of your diagnosis and beyond. You'll find some amazing resources on the My Journey app. Sign up at my journey dot org dot au. And don't forget if you want to connect with others who have a shared experience, join BCNA’s online network. You can sign up on the website. Next time on the podcast, we're going to shake things up and talk about the Snow Globe effect.
Episode preview [00:45:06] If you think about the snow globe is your life and then cancer shakes up your life and all those little snowflakes are your values and priorities. And when they settle after diagnosis, none of them settle exactly where they were before. And so some things that used to matter don't matter anymore. And some things that didn't matter. Sometimes now do. It's a pretty significant effect, and it often isn't one that's given a name. And people can kind of wonder, like, why am I feeling some of this stuff?
Kellie [00:45:39] Thanks for joining us. I'm Kellie Curtain, and it's good to be upfront with you.
Ends [00:45:43] Thanks for listening to upfront with 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.
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