What You Don’t Know Until You Do, with Dr Charlotte Tottman: Episode 1
Episode 1: Upfront About Breast Cancer – What You Don’t Know Until You Do, with Dr Charlotte Tottman: D Day: Diagnosis Shock
Let’s be Upfront about diagnosis shock.
In this episode of What You Don’t Know Until You Do, with Dr Charlotte Tottman, we hear about Charlotte’s diagnosis story including the initial shock and common reactions in the aftermath of a cancer diagnosis. Charlotte discusses physical and psychological responses, including fight and flight, information control, and anxiety spikes.
We also explore what information and tactics helped her process the information and how she told her loved ones of the news.
We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting. 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
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- Listen to our Upfront About Breast Cancer Just Diagnosed - What's Next? and What I Wish I Knew podcast.
- Watch our Just Diagnosed - What's Next? and The Psychological Impact Of a Diagnosis of Early Breast Cancer webcast.
- Visit our Online Network to connect with people going through a similar experience.
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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.
Want to get in touch? Visit our website at bcna.org.au, email us at email@example.com, or call our Helpline on 1800 500 258
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. 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 [00:00:45] Hello and welcome to Breast Cancer Network Australia's podcast. I'm Kellie Curtain. This is Upfront About Breast Cancer - What You Don't Know Until You Do, a special series with clinical psychologist Dr Charlotte Tottman, who specialises in cancer distress. She's also someone with lived experience of a breast cancer diagnosis. In this series, we're going to be upfront and personal with Dr Charlotte about many aspects of what happens to the mind and body, not just at diagnosis, but long after the treatment has stopped everything from feeling alone. Even when you're surrounded with people accepting the changes that a diagnosis brings right through to intimacy and fear of the cancer coming back. It's raw and it's real, but we're going to have a few laughs too, and Charlotte is going to offer some professional insights and strategies to help you. In this episode, we're going to start at the beginning a cancer diagnosis. What Charlotte refers to as D-Day. Please note that this podcast is an unscripted conversation. The topics discussed are not intended to replace medical advice nor represent the full spectrum of experience or clinical option. So please exercise self-care when listening as the content may be triggering or upsetting for some. Charlotte, it's a few years on, but does it feel like yesterday?
Charlotte [00:02:11] Hello, Kellie, it's nice to be here. Some days it feels absolutely like yesterday. So yeah, we're going to start at the beginning and just before I actually talk you through my own diagnosis story, just to give people a bit of an understanding of why it was so ironic. I have for a long time been working as what's called a psycho oncologist, which is a clinical psychologist who specialises in cancer related distress. So, I'd been doing that work for many years and then had the unpleasant experience of finding myself on the other side of the fence as it were.
Kellie [00:02:50] And it's changed everything.
Charlotte [00:02:52] Yeah, it kind of has. I mean it. It's weirdly now I say three years on, it's there are definitely good things about it. I mean, does that mean that I would want it to have happened? Hell no. But I can see with the benefit of time and some of my own therapy with my own therapist, I can say that there are some things that are pretty positive out of it and that cancer kicked my butt.
Kellie [00:03:19] And that's what's going to be so good about this series to have not just your professional insight, but your lived experience and how you can relate to so many who are going to be listening to this.
Charlotte [00:03:34] Yeah, it's a weird combination, but it's kind of a weirdly helpful combination in the work that I do. My own experience with breast cancer has given my understanding of it just a whole other dimension. And when I reflected on my clinical practice after my diagnosis, you know, a lot of it I happily found was on point. But there were definitely things that I did not really truly appreciate. Things like what fear of recurrence feels like, just how important feeling understood and validated, and not feeling emotionally isolated is and also just how individual everyone's experience with cancer is. So, some big learnings for me, and the biggest one of all was that I wasn't any different to anybody else, that I wasn't special, and that cancer sorted me out.
Kellie [00:04:29] OK, so let's talk about your diagnosis.
Charlotte [00:04:33] So it was the middle of 2018. We were on holiday and I was putting some sunscreen on and my hand just went over the part of my breast, just the bottom part of my breast, and I noticed a lump and I thought, that's new. I don't think that's been there before, but it wasn't a big lump and we were on holiday and I didn't think a lot of it and I couldn't always find it when I went back to kind of feel it again. My husband, Robin, who is also a clinical psychologist, he told me later that he also had felt the lump, but similarly, it wasn't like he could always feel it, so he didn't say anything. So we got home from the holiday and hadn't done anything about it, you know, and initially, but I did find myself over the next few weeks getting a little bit distracted in my brain, I guess, particularly because of the work that I do. And I thought, Oh, I probably should do something about that. So I messaged one of my mates who's a breast surgeon, and I said to him just in the message, look, I've got I think I've got a lump and it's just making me a bit distracted, do you think he could just have a look at it and put me out of my misery fully thinking that there was nothing serious going on? And I sent him the text on a Friday, and he messaged back and said, sure, come and see me on the Monday afternoon. So that was all set up. And I told Rob this, and Rob works away from Adelaide on Mondays and Tuesdays. He works in regional South Australia, and he was sufficiently bothered, even though he wasn't really letting that on to me that he organised his afternoon so that he could get back in time to see Andrew, the breast surgeon, with me. I was not bothered, and to this day, I find this whole process and what my brain was doing rather remarkable. So, Monday came and despite the fact that I knew that Rob was planning to come back in the afternoon and that I had this meeting with Andrew at four, I was really not worried. And I suppose part of that was probably because I'd had as a lot of women have over the years, you know, I was 54 at that stage. I'd had the occasional lump, the occasional scan. And I suppose the other thing just worth mentioning is that both my parents had died of cancer a long time ago when I was in my 20s, mum of ovarian and dad of bowel. And for a long time, I had really believed that I would get cancer, and that probably persisted into my memory. And maybe that when I was 40. And then I don't know whether I just stopped or think people around me got sick of me saying, I'm going to get cancer and die, so maybe I'll just let it go. But by the time I was 54, I didn't really think it was going to be anything. So, I rocked up to the to the appointment with the breast surgeon. And Andrew is just fabulous. He's my guy and I got there and he was very pink faced, rosy cheeks, big smiles and very lovely. And I went in and he did a quick medical exam and very, you know, nonchalantly said, you know, we'll just pop you straight through to imaging. So, you know, I went to imaging and I was in there for an hour and a half, which is a really long time and would have arguably been long enough for me to kind of start to smell a rat. But I didn't, and I find that quite interesting. There were, and I'm sure lots of people listening would relate to this, that there were a lot of people coming and going into that imaging suite. There was the radiographers and it was the radiologist and there was Andrew and they were coming and going and they were not really talking. They were sort of talking with their eyes.
Charlotte [00:08:34] And still, I was not worried. And even after three biopsies and an hour and a half and the radiologist who was just delightful and I didn't know at that point, but I came to understand later that she'd had her own experience of breast cancer. But she came around to the side of the bed I was lying on and she leaned in very close in in a very caring and intimate way, said to me, Charlotte, I just want to wish you all the very best with whatever comes next. And even when she did that, my brain wasn't going, Houston, we've got a problem. So I got up off the imaging bed in my, you know, gown where your bum hangs out the back and I walked out and I could see Rob had arrived while I was in the imaging, so he'd never met Andrew. And there was this weird moment where Robin, Andrew and I sort of formed a triangle about 10 metres apart from each other. I could see Rob in the waiting room and Andrew at the door of his consulting room and me coming out of the imaging suite. And we all sort of move together and I could see Andrew's face and it wasn't pink and rosy, and he wasn't looking chipper anymore. He was looking sort of grey. And even then, I mean, I pieced all this together later, but even then, my brain wasn't registering. So, it's certainly a good example of how your brain sort of operates independently of you, even when there were all of these indicators coming at my brain from the environment, if you like to say we've got a problem. I still wasn't registering. So we get into Andrew's consulting room, and Robin and I both sit down on our side of the desk, and Andrew's being delightful as always. And he turns to Robin, and he does what a lot of medical professionals do quite appropriately. He says to Robin, you know, ‘it's really nice to meet you, Robin, and tell me, what do you do for a living now?’ I'm sitting there thinking, Oh, this is just lovely. Andrew's being so collegial and so, so professional and so kind. But what Andrew was doing was he was assessing Robin's ability to process the information that he was about to deliver. That's a good thing to do because it can change the way a medical professional will deliver that information. So, Robin said, ‘Oh, well, I'm a clinical psychologist, too’. And at that moment, I can remember saying Andrew's head swivel back around to face me, and he said, ‘Well, I'm not going to pull any punches, you have breast cancer’. And then a bomb went off in my brain, and I don't actually remember anything that happened for the next 20 minutes, I know I sat there, I know Robin sat there. I know there was a conversation between the two of us, but I do not remember a word of it. It was like my brain was in a washing machine.
Kellie [00:11:31] OK, so we hear about that a lot. That once the cancer where it is mentioned everything else becomes a blur. What was it in hindsight that your brain was doing?
Charlotte [00:11:48] It was protecting me. Yeah, it was a defense mechanism. I think it was. It was almost like it was just cocooning me. I'm not a stupid person, although, you know, some would disagree. I'm not a stupid person. And yet, you know, you sort of go ‘God with all of those indicators, what was going on there’. But it was it was protecting me. It was just, I think, buying me a bit of time.
Kellie [00:12:11] And your psychological training did not help you at that point.
Charlotte [00:12:15] No, nothing. Nothing really helps at that moment. You're just a raw human being. What it set off in me was a big anxiety spike, and I'm sure again, a lot of people listening would be able to relate. And anxiety spikes have a bunch of physiological symptoms, and some people get all of them. Some people get just a few of them. So, the thing that happened to me was definitely that kind of brain blast situation where I just couldn't process information. I couldn't listen. I couldn't lie down memory crises. So, all of the normal cognitive functioning that you would typically have going on reduces. And the reason that happens is because when you have an anxiety response, it's a threat response. The blood in your brain redistributes to other parts of your body to principally to your arms and legs to get you ready for fight and flight. So, it's in a what we call an adaptive response, but it does mean that your ability to operate cognitively is really impaired.
Kellie [00:13:18] So in a primitive sense, if you were out in the wild that blood redistributed to your limbs was going to allow you to get for your life.
Charlotte [00:13:27] Correct. Exactly. Save your life. So that's what happens. And your brain can't make the distinction between a breast surgeon saying the word breast cancer and a wild beast charging at you like your brain smart. But it's not that smart.
Kellie [00:13:42] OK, so you don't recall much of whatever happened in the next 20 minutes, which would have been what was going to happen next?
Charlotte [00:13:55] Yes. Yes, exactly. And it is interesting. And I know, you know, a lot of a lot of times we do recommend that people take a support a person with them to medical appointments, which I fully endorse. But it's really hard in the first one, the diagnosis one because you don't know, you know, it's coming now. It happened and I was fortunate that Robin had smelled a rat and made his arrangements to make me there. But there was an equal chance that none of that would have happened, and I would have been sitting in that consulting room with Andrew by myself and have no recollection of what happened. So Robin also really did struggle. Not so much. He has a pretty good memory of what happened in that first 20 minutes, and I was talking, apparently, you know, I was having conversations about treatment options and what would come next and all of that. I just don't remember it. But then we both went into another room with the breast care nurse, and that was where a whole lot of information was again given to us. And thank goodness it was given to us in writing as well as verbally. It was a lot of information about what was coming, but it was also a lot of appointments. All of the staging scans that happened over the next few days were made in that next half an hour of phone calls and appointments set up and all of that. And Robin and I got home about, I guess, a half an hour after that half an hour, and both of us looked at each other and were like, ‘Do you know what's going on? You know what we meant to do next?’. And we were both like, not. And thank goodness it was all written down because otherwise we would've been hopeless.
Kellie [00:15:26] We hear of a lot of people talking about information overload because there is so much to organise and then you don't even really have the time to digest it yet. Yeah. Was Robin able to digest some of it given?
Charlotte [00:15:42] No, not really. No way. And this is another interesting point that absolutely there is a tsunami of information. There is even information, medical information, appointments, decision stuff. There's also a whole lot of emotion-based information. You're taking in a whole lot of psychological and emotional responses and your body and your brain is trying to process all of these, and we all process information at different speeds and information processing takes time. It doesn't, you don't just process all this stuff in a moment. It can take not even just hours or days. It can take weeks and months to process some of this stuff. And at the same time, as you've got this massive wave of information coming at you from your new best friends, your medical team, you've also got for a lot of people, a whole lot of life stuff that you've got to then coordinate. You've got to tell people, you've got to manage other people's responses, emotions. You've got to figure out what you're going to do with things like kids and work and parents and study and time off and all that sort of stuff. So, there is so much going on in those first few days and you are you are reeling, and you are really struggling just to sort of almost stay upright.
Kellie [00:17:06] And I would imagine for many who do have all those commitments of life that somehow instinctively you worry about how everybody else is going to be and you haven't even sort of started to digest what's going to happen to you yet.
Charlotte [00:17:24] Yeah. And I think that particularly for women and, you know, for women who have kids and husbands and ageing parents, there is a real pattern of looking after everybody else. And so we keep, you know, we keep rolling with what we know with the familiar. And I know that in our case, you know, we got home because of the diagnosis. I mean, it's seared into my brain. Monday, the 23rd of July 2018, 5:30p.m. That's when I got told. So, we were probably home because where we were at, the hospital was, it was literally two minutes from home and we were in Adelaide. So, there's no traffic ever. We were probably home about 6:30pm, quarter to seven, on a Monday night. I know I don't remember. I know because Robin told me we swung straight into, ‘We've got to tell the children’. So, we've got four adult children who at that stage were aged between about 22 and 32, one of them were living overseas and two of them were living in Adelaide. And for anyone who's got more than one child probably understand there's a bit of both. Certainly, we felt a really strong sense of like we needed everybody to know the same information. At the same time, we didn't want the kids who weren't in Adelaide to feel somehow, you know, like they weren't getting treated the same way. And so that's quite hard to do when you're dealing with different time zones. I don't remember telling them, Rob says that I was the one who made those calls, but I don't remember telling them we spoke in person. We told the kids here in Adelaide, and I rang my sister, who's in Melbourne, and Rob told his brothers over the phone because all of them were not living in Adelaide. So, it was a big night of telling other people and dealing with their reeling, their shock. And everybody's also everybody's different information processing and different responses. You know, there was a lot of like, ‘do we need to get on planes to come home?’ And as a parent, you can't help but go into that protective mode where you want to be honest and transparent, but you also don't want to like freak the children out any more than they are already freaking out. Again, I don't remember any of this, but it was. It was a big night. And then the next day began the week of or the next couple of days began all of the staging scans, which for people who've been through them, it's just hours and hours and hours of waiting and being scanned in every possible way and having, you know, things like dyes and all sorts of things and a fair bit of sitting around. And I do remember through those days of feeling again, just back to those physiological symptoms of anxiety, feeling really sick, really nauseous. I don't think I ate that whole week and I just existed on water and coffee and feeling quite detached. Some people describe this with anxieties, almost like a slightly out-of-body experience, you just feel a bit like it's all a bit unreal. And then I had this unpleasant experience as well where I did all the scans, and I knew that Andrew would be getting back to me later in the week to let me know the results of the scans and I wasn't thinking that it could be worse than a tumour in my breast that actually had not really occurred to me.
Kellie [00:21:00] So with some people, they imagine the worst. So, until this point, you still don't know, you know, you have breast cancer.
Charlotte [00:21:07] And now I have breast cancer. We don't know what grade and if it's spread.
Kellie [00:21:13] What type.
Charlotte [00:21:15] No, not even. I think this was not. And I think the fact that my brain wasn't kind of going to that dreadful place of, you know, of it being worse. I think it was my brain's way of protecting me. But what came next was really unpleasant, and that was that on the I think it was the first time. Friday that week I still was still working because I was kind of like, ‘Well, what else is there to do?’ So I was still working and I got a missed call from Andrew while I was in with a client and then in a break, I listened to the message from Andrew and it said, ‘Can you ring me back when you get this message, Charlotte?’ Don't worry, it will be a good phone call. And in that moment in that nanosecond, my brain went, ‘It's all been a terrible mistake. I don't have breast cancer. Andrew's ringing me to tell me that he was wrong, that I don't have breast cancer’, so I went. Having been on the Monday, you know, Monday morning, I don't have breast cancer Monday night, I have breast cancer now. By Thursday again, I don't have breast cancer, and I was like, back in the clear and everything's fine. And it was relief in my brain at this point before I rang Andrew back, the relief in my brain was unbelievable. And then I rang him back and he said, ‘I've got great news, Charlotte. The cancer hasn't spread’, and my brain is going, ‘What are you talking about?’ But I don't have cancer, and you're telling me that I have I have cancer that hasn't spread and I couldn't put it together, and it was like being diagnosed all over again. And I had almost like a repeat experience of what happened had happened on the Monday where my brain, just like another bomb, went off and I felt newly sick all over again.
Kellie [00:23:10] What's that actually happening in your brain, then? Is it a chemical overload? Is it what the stress hormone going nuts?
Charlotte [00:23:19] I mean, I definitely would have had an enormous amount of adrenaline charging through my system. That and cortisol accounts for a lot of the physiological stuff that you feel, the fact that your brain doesn't work, the fact that you feel sick and that your heart rate goes up and you might feel hot and sweaty and your brain feels light-headed and dizzy. All of that stuff, and it's involuntary. You can't control it. Yeah, you can't control it. I mean, you can do things after the fact. Like once it's hit you, you can really slow your breathing down. You can sit down or lie down, which takes the physiological pressure off your body. If you're hot, you can get cool. You can do other things like get yourself into the present, like really engage in the present. You can use grounding techniques or meditation, but I've got to tell you in that moment, all of those things were eluding me, finding it difficult just to stand up. So that was a really nasty second round of kind of being diagnosed. And then we moved fairly quickly into treatment planning and decision making. That's what kind of took up the next few days.
Kellie [00:24:29] So you had hormone positive breast cancer?
Charlotte [00:24:32] Yes, I had hormone positive breast cancer. I had what they call the garden variety breast cancer, and I had a tumour and DCIS in my in my right breast. And the decision was made that I would have a double mastectomy. And that was largely because we wanted a very safe approach because of the family cancer history. We didn't know at that point whether there was a genetic component to my breast cancer and because mum had had ovarian cancer and there was also some other breast cancer and prostate cancer in the in the family. So, both parents had died of cancer and all four grandparents. There was just some conjecture about, you know, when you've got that much cancer and that much death, there's got to be a good chance. It's genetic now, as it turned out, when we did the genetic testing a couple of months later, it turned out that it appears not to be genetic, but we didn't know that at the time.
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Kellie [00:25:59] So it's very common for every person diagnosed to instantly want to just get the cancer out, get it out. And it was in one breast, it wasn't in the second. So, is this about taking control? It's like, Okay, let's not just get rid of this one. I want to remove any chance of it possibly appearing at a later stage in the other one.
Charlotte [00:26:22] I think that because of the concern that there might have been, for example, a BRCA gene involvement, in which case my risk of breast cancer would have been very high, it would have been a much higher risk situation. I think the thinking was, let's just go hard. Now, that's not the same for everybody. And this is where you know again, to state the bleeding obvious, everybody's experience is so different, it's very common for people to be keen to get more than one breast off for all sorts of reasons for risk, for symmetry, for managing fear. But there is often a reluctance in medical professionals to do that, and that is usually because the requirement of their role is to either get rid of the cancer or control the cancer, and a bigger surgery comes with bigger risks. And so they are usually rightfully focused on what’s right on dealing with the bit that they know about now. My case was what it was, and we didn't know about the genetic bit, but there was some real concern.
Kellie [00:27:40] So you were in a form of denial until you got the second call confirming that the breast cancer hadn't spread. Is denial a common reaction from people?
Charlotte [00:27:53] So my denial was really on that Thursday, and denial is an extreme form of what we call avoidance and avoidance is a really common and, in many respects, normal coping strategy for humans. What it means is we stay away from things that make us feel uncomfortable. So, you know, you go to the Chinese restaurant you have the doctor gives you food poisoning, you don't go back to the Chinese restaurant to have the duck. That makes sense. But what my brain did on the Thursday was it went to a place where I did not have breast cancer. Now that's not what was going on. So. it was a way of me coping with something that I simply could not cope with at that time. I was forced by the circumstances to move through the denial and deal with the reality. But as we will discuss in a later episode, many months down the track, I was still very resistant, which is not the same thing as denial, but it's in the same family. I was still very resistant to confronting the implications of everything that that this meant for me.
Kellie [00:29:00] There's so many unknowns when it comes to a cancer diagnosis. Once you find out you've got breast cancer, you've called your children and there's a lot more questions than answers. Still, because they want to know if you're if you're needing them to jump on a plane, but you actually don't know what sort of breast cancer you've got. You just know you've got breast cancer. So, there's those questions. And then now you know that it hasn't spread. But and you know that you need surgery, and you need a mastectomy, but you've still got a few days before it happens. What happens to your brain in those days between finding out what needs to happen and it actually happening?
Charotte [00:29:40] It's a lot to process and there's a lot going on and you are being required in that time to make plans, make decisions, treatment decisions, get organised and continue to sort of navigate that situation with the people around you. So often what happens psychologically is your emotional system, your psychological system goes on hold and nobody, nobody notices this, and it's not like there's somebody standing there with a finger on the pause button. But I see this in my work all the time where once people get into the treatment planning and then the treatment phase, it's go, go, go, go, go, go, go, go, go. It's appointments and treatments and interventions and recovery and side effects and more appointments. And then, you know, fitting managing the bits of your life in around the edges. But all of the emotional responses and what it all means for your life now, for your future, for your family's future, what it might mean for family members, for their own risk profiles. All that stuff kind of gets just put on hold and it doesn't come off hold until you usually get to the end of hospital-based treatment. And that, for a lot of people is some months later. And then it can. It can come at you with a bit of a roar, like when someone sort of takes their finger off the pause button. So you sort of almost go into like a little bit of a I mean, it's like I call it survival mode, where you just have to do whatever you need to do to get through the next few days that turn into weeks that turn into months.
Kellie [00:31:24] Is this in an effort to try and find some sort of control or take control of what you can before you enter the unknown?
Charlotte [00:31:33] I think there's a there's a big emphasis in that sort of survival mode thing. There's a big emphasis for us on the practical and absolutely that manifests in taking control of your own environment. So, for women, it's often a lot of what looked like what we call nesting behaviours. So it's kind of cleaning and organising. For me, it was absolutely like that. I the second week before, so I was diagnosed on the Monday and I had surgery the Friday week after that. The first week was tests in a couple of days of work. The second week I was off and I spent a lot of that week physically getting organised. My sister had sent over some new bed linen. This is what we do in our family. We buy bed linen when we're stressed and we set up the spare bedroom as what we thought would be the chemo suite because I didn't want to be in my normal bedroom. So we did all that sort of stuff. What that does is when you're organising and sorting out your immediate environment, it's actually a psychological response where you're increasing perceptions of control. So when you are trying to deal with a situation where it feels like basically everything is spiralling out of control, human beings turn to the things that they can control, their immediate environment. And for me, it was two things. One was my immediate environment. So getting organised physically and practically. And the other was information control. And so for about 48 hours after I was diagnosed, I was quite obsessed and I don't say that word lightly. I was quite obsessed with who knew what. And so I would be saying to Robin like, you know, you can't tell this person that until this person, other person knows and who knows about that, Beeton? Have we told so-and-so this bit? And I was very I was holding on to information very tightly.
Kellie [00:33:27] Is that because you wanted to be the one to tell them? Or was it more about, ‘Oh, I can't have that person knowing before that person’?
Charlotte [00:33:36] I don't think it was really it didn't feel like it was related to anyone else. It felt like it was just a control thing for me. So human beings like control. It's a very normal thing to like. If we feel like we have control of a situation, we have a sense of predictability and therefore security. And so it makes us feel safe. And so there's a big difference between liking control, which is really normal and being controlling, which is not helpful at all. And I think what I was trying to do with holding onto information and being kind of the boss of who got to know what when was just my clumsy way of making myself feel better when everything else was going out of control. Once the information sort of started to get out there and, you know, people beyond immediate family knew, I just sort of let go of it. And maybe that was also because a couple of days had passed. And the curious thing that happens with horrible information and this is born out in lots of research and particularly in, you know, situations as awful as concentration camps is that the awful becomes familiar. And as it becomes more familiar, it doesn't seem to be quite so awful, even though we know it is awful. It doesn't seem quite so awful because it's not new. It's familiar. And I think that's what was happening over those first few days is that as my brain was starting to process the information, I wasn't any happier about it, but the shock was wearing off.
Kellie [00:35:11] So in that time between diagnosis and surgery, apart from nesting, did you make any other changes? What else did you do?
Charlotte [00:35:18] So there was this thing that we did, and it's not something that I'd ever recommended to a client before, but I have since and it was a really good thing to do. We did a photo shoot of my breasts, so once that sounds a bit weird, doesn't it? When once we'd made the decision and we had the surgery set for the Friday, Rob and I had quite a number of late night middle of the night conversations away from the children about breasts and everything that we were going through. It was pretty intense and, you know, it just sort of started to dawn on us that, you know, there were these parts of me that weren't going to be there anymore. And oddly enough, I didn't have any photos of my breasts up to that point. And I thought, well, perhaps I could do something about that. I guess another thing on that score I hadn't anticipated. So it sounds like had anticipated because we did the photo shoot. It sounds like I was all about it. Like, I knew that I was going to miss my breasts, but I didn't. I hadn't ever really rated my breasts as being particularly special. A very, very small. I was a swimmer, so I had a very broad back, like a maybe like a 14 triple A would have been my size. And so, if you'd ever asked me, like what my sort of like my feminine feature was, I probably would have said my legs, definitely not my breasts. So even though you know, one part of my brain is going, Let's do a photo shoot to capture this in, you know, perpetuity. There's a bigger part of my brain going. This will be fine. You know, my breasts have done their job, I did the breastfeeding long time ago. And, you know, life without them won't be a big deal. So I did a quick bit of Google research and found a boudoir photographer because I wanted somebody who was used to photographing your personal bits without getting uncomfortable. And I rang him and I explained the situation and I said, ‘You know, we've got a bit of time pressure. Do you think you could take some photographs of my breasts?’ he said, ‘Sure, come on in’. So we did. And for about an hour of May in mandis, he took a whole lot of photographs. And I mean, basically, you know, they've not seen the light of day, but we've got them. And I'm so glad that we did because I really do miss my breasts and my husband really misses my breasts, too. And if we can't have them in the flesh, at least we've got some really, really lovely black and white photos. They're really tasteful. They're really nice and we've got them. So that was a really good thing to do, and it's certainly something that I do recommend to my clients. And even if people don't want to go to the extent of having a photo shoot, I do say to them, Look, I think it's really important to kind of pay some homage to your breasts and say goodbye to them. Sounds a bit naff, but it's really important because this sets up grief and loss. And, you know, just really taking a bit of time and sitting with the fact that this is a big thing and it certainly surprised me how much it's bothered me that I don't have them anymore.
Kellie [00:38:26] Did you ever ask why and at what point did you?
Charlotte [00:38:31] Yeah, definitely asked why, and I did talk to my therapist about this. I've been saying a fabulous man since I was 16. I don't see him very often now, but he knows. He knows me. He knows the inner workings of Charlotte and all of my poxy life stories. And that's great because it means when I do see him, we just, you know, pick up where we left off and I went and saw him. And the backdrop to this bit is that I'd had a really dysfunctional relationship with my mum and dad or all right relationship with my dad, but not great. And so when I went and saw my therapist, I said to him, ‘Do you think this is mom and dad sort of getting me from the grave’ and he looked at me and he crossed his legs and he said, ‘Charlotte, I know why you're saying that. And I completely understand it. And then he said, now pop your rational head back on’. And it was just so helpful to be able to share that with him and have him validate it, not dismiss it, not tell me, you know, that it was a ludicrous thing to think it was. He understood. And of course, logically, you know, I don't believe that my parents can do anything from the grave. What that was reflecting was my search for an explanation. We call it a causal belief. So why did this happen to me? What caused this cancer? And I think just about every kind of ever seen has some theory about and sometimes it's random chance. It's luck. And it's sort of the opposite of winning Lotto. But human beings like an explanation. They like to know why something happened, because that allows them to sort of understand it. Give it a framework. Pop it in a box, pop the lid on the box and pop the box away if you don't understand it. If you don't have an explanation, it can leave you feeling uncertain. And we really don't like uncertainty. That's why the world has struggled so much with the events of the last couple of years because we've all been living in this incredibly uncertain world.
Kellie [00:40:37] What about anger? Did you experience anger?
Charlotte [00:40:42] Yeah, I did, but not until later. So in the early days, I wasn't angry. There was even a part of me that was a bit, you know, before I said that up until I was maybe my 40s, I was really quite convinced that I was going to get cancer. There was even a part of me. Once I got past the initial few days, that was sort of like, Well, you know, we were probably always going to end up here. So it wasn't I wasn't angry until later when we got to post treatment. Oh, I was angry then, and we'll talk about that in another episode.
Kellie [00:41:22] Angry at yourself or angry at the situation.
Charlotte [00:41:24] I am angry at the situation. I didn't hold myself responsible, I think, and that's actually going back to what I said before, and I said I couldn't remember it. One of the things people do quite often is use a diagnosis as an opportunity to beat themselves up about choices they've made. You know, I sort of look for, you know, I did. Did I drink too much alcohol? Did I not exercise enough? Did I have a too stressful life? If I had a dollar for every time somebody worried about that, I would indeed be a wealthy woman. So we look for an explanation, partly because it gives us understanding and helps us cope better. But we also look for an explanation because if we can identify what it was that caused the cancer and then we can eliminate it from our life, it makes us feel safer. So if, for example, we could say conclusively that me drinking iced coffee milkshakes, one once a week for the last 20 years caused my breast cancer, well, then I can just stop drinking iced coffee milkshakes and I'll be fine. But it doesn't work like that because there are with breast cancer. There are risk factors, but we don't have a causal factor other than genetics. And so that can leave you wondering and not having that certainty and having to sit with the certainty, the uncertainty, which then, of course, fuels the fear that it'll come back.
Kellie [00:42:47] And I suspect that it goes the other way, too. It's like you don't really know what's going to help you breast cancer, so you go and read up on all those magical cures.
Charlotte [00:42:56] Absolutely. And similarly, the fear of it coming back can drive you to consider maybe alternative therapies or belief in in strategies that might not have any evidence base and that can be risky.
Kellie [00:43:12] You're a professional woman. Very busy life. Were you angry or annoyed or some other emotion at the prospect of actually having to stop to have surgery and basically disrupt your life?
Charlotte [00:43:30] Yeah, I mean, it was incredibly inconvenient, and I'm sure a lot of a lot of people listening would find the same thing. I mean, I think once you move through that first diagnosis, shock brain blast few days where you just literally feel like your whole world has sort of blown up. And then things start to kind of take a bit more shape and you start to have to, you know, sensibly think about how you're going to navigate the next few weeks and months. You start to deal with the very practical realities. And it was it was very inconvenient and I had to obviously manage my diary. I work full time. I see a lot of clients. And so that meant that we had to let everybody know and make sure that everyone had a plan to be supported while I wasn't there.
Kellie [00:44:23] Once you've had the diagnosis, is it worth going back over it? Do you re- process it?
Charlotte [00:44:29] Yeah. One of the things that's bit tricky about the diagnosis shock and even this episode is as opposed to the ones that we're going to have going forward, is that you don't know this is coming, so you can't sort of prepare for it. You can't get your game ready to cope with what's going to happen when you're diagnosed. You can learn from it. You can learn about the benefits of taking someone with you to important appointments of what it's what it feels like when you get an anxiety spot, what it's like to go and maybe even experience panic when you're in a, you know, MRI, you know, you can learn from those sorts of experiences and strategize around. But in terms of what helps in the moment with diagnosis shock, not much later, actually unpacking it can be really helpful. And in fact, in the first session that I do with any new client, we spend that first session and I ask them to take me through the circumstances of their diagnosis, their treatment protocol and their understanding of prognosis. And what that gets them to do is tell me their whole story in one sitting, and that is incredibly therapeutic. Most people will say to me, I've told bits of this story to different people at different times, but I've not ever sat down and told one person the whole story in one sitting. We call that re-processing events, and what that does is it allows you to actually confront the magnitude of everything that you've been through and sort of see it for what it was and appreciate that if you have been struggling, there's a really good reason why because it's been huge.
Kellie [00:46:07] It is huge. And there's so many big other parts of a diagnosis after the initial shock, the treatment and then life living with breast cancer. We look forward to discussing a whole lot of interesting topics in the coming episodes. And if this episode on diagnosis has helped you, you might like to share it with someone else. And don't forget to subscribe to ensure you never miss an episode of this terrific series, rate and review, if you can, and if you have a few minutes. There's a survey in the show notes your feedback ensures BCNA continues to deliver more content, what you want and what you need. BCNA My Journey has a range of resources related to breast cancer. Sign up at my journey dot org dash dot au. And if you're looking for some peer-to-peer support, BCNA’s online network is available 24/7. Join by visiting the BCNA’s website. Next time we will chat about emotional isolation in a cancer experience, and that’s even when you're surrounded by those you love.
Episode preview: [00:47:13] I said to him, ‘Okay so I am going to do something right now, just bare with me’, and then I stood up and I lifted up my top and I showed him my chest, which, you know wasn’t a good look, but it was a very clear visual reflection of everything that had happened in the last couple of months in that split second everything changed. He got it’
Kellie [00:47:48] Our theme music for this series is by the late Tara Simmons, who lost her life to breast cancer. We're very grateful to her family for allowing us to use her music. I'm Kellie Curtain. Thanks for being upfront with us.
Ends [00:48:03] 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.