In this episode Charlotte discusses metastatic disease from a psychological perspective, exploring the thin line between coping and not coping, artificial intensity, avoidance and reassurance.
BCNA and Charlotte would like to acknowledge BCNA Consumer Representative Dr Andrea Smith who generously shared her story and knowledge about living with metastatic breast cancer in this episode.
This podcast was recorded in February 2023
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
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 Sussan.
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Ad [00:00:16] This podcast is proudly brought to you by Breast Cancer Network Australia. Your first call after being diagnosed with breast cancer can be difficult. BCNA’s Helpline can help ease your mind with a confidential phone and email service to people who understand what you're going through. BCNA’s experienced team will help with your questions and concerns and provide relevant resources and services. Make BCNA your first call on 1800 500 258 or email firstname.lastname@example.org. Welcome to Upfront About Breast Cancer, What You Don't Know Until You Do: Unlimited with Dr. Charlotte Tottman.
Kellie [00:01:04] Welcome to Upfront About Breast Cancer, What You Don't Know Until You Do: Unlimited with Dr. Charlotte Tottman.
Charlotte [00:01:11] Hi, Kellie. Good to be here.
Kellie [00:01:13] Good to have you. Today, we are going to be upfront about living with metastatic disease, which is when the cancer has progressed to other parts of the body. Metastatic breast cancer is, in most cases treatable but not curable. Metastatic is one word that has a very broad spectrum and therefore is often misunderstood. And there's no denying it's tough for someone with a metastatic diagnosis and for those closest to them. It can be a real rollercoaster of hope and reality. And Charlotte, we're going to unpack some of that today.
Charlotte [00:01:46] Yeah, this is a pretty big episode and we obviously didn't go into this space in series one because series one was reflecting things that I have experienced. And to be clear, I don't have metastatic disease. So this is very much from the perspective of being a clinical psychologist. I work with a lot of people who are living with metastatic disease. I'll be sharing, a lot of my observations about that today.
Kellie [00:02:13] And a reminder that this podcast is an unscripted conversation and doesn't replace medical advice nor represent the full spectrum of experience or clinical option. Some might also find this discussion triggering so please exercise self-care when listening. Charlotte as you just said, it's very broad, there's so many degrees of metastatic, isn't there?
Charlotte [00:02:38] Yeah, there are. I've started thinking about it as the metastatic spectrum and I'll talk about why in a sec. But before I do, I just want to acknowledge Dr. Andrea Smith, who has been instrumental in helping me prepare for this episode. Andrea is a consumer representative, a very senior consumer representative at BCNA. She's a researcher, she's done a lot of work with BCNA in the last 12 months on calculating the likely number of women in Australia who live with metastatic disease. Staggeringly, we have not known that number previously. And for context, Andrea is living with metastatic disease. She's a bit of a legend and I just want to highlight the importance again of her research because for people living with metastatic disease, they often have felt very unseen. And her research, her recent research is making them feel seen.
Kellie [00:03:29] Okay, so the varying degrees of metastatic. We've just clarified that metastatic is treatable, not curable. Metastatic can be when it has gone to one other part of the body, or it can be completely through a number of organs, can't it?
Charlotte [00:03:49] Yeah, and that's where this idea of the metastatic spectrum I think is quite useful as a way of thinking about living with metastatic disease. Because we talk about breast cancer in stages, you know, stage one, two, three, four, and there are even, 1a, 2b and that sort of thing. But once you get to metastatic, I think there may be some then some extra numbers in there sometimes. But for most people it's a stage four diagnosis and that's perhaps where the understanding stops. So metastatic spectrum can cover from living with one well controlled bone metastases where you might be having medication, you may have had some radiotherapy all the way through to perhaps having metastases through all of your major organs, including perhaps, things like your liver and lung and brains, and you may be really facing the last months of your life. They're very far apart, those two kind of presentations. And then there’s everything in between. So the one word metastatic, we use it to describe a very broad spectrum of experience. And that's not to say that living with one bone metastases well controlled with medication is not a big thing. It's a very big thing. If I had one bone metastases, I would be freaking out. So it's not about saying that one is bigger or smaller or better or worse. It's just about recognising that the spectrum and the word metastatic does cover this incredible diversity of experience.
Kellie [00:05:27] And not many people outside of someone who's been diagnosed or living with someone who is diagnosed metastatic even know what metastatic means.
Charlotte [00:05:36] Most people can't even say metastatic. I have I have a lot of people in my life, not so much in my consulting room, because by the time people have come into my consulting room, they've had to get their heads around saying the word metastatic. But I was even thinking, and I don't know, I think maybe this just entertains me, But I was thinking like, what’s a good way to think about learning to say metastatic. So I broke it up into Meta and static. So Meta I think about Facebook and static I think about electricity so and I think about metastatic as Facebook electricity. We could have called the episode that but I'm not sure anyone else would’ve gotten it!
Kellie [00:06:12] No, possibly a little bit cryptic! Okay, so I think it might be worth noting that metastatic disease can arrive, if you like, in two ways.
Charlotte [00:06:24] Yes, that's right. So within that idea of having metastatic disease, you can either be diagnosed what we call de novo, which means that on diagnosis of cancer, for the very first time you already have cancer and that breast cancer has spread and we call that de novo metastatic disease. The alternative is that you have a recurrence. So you go from, like me, an early breast cancer diagnosis, and then at some later point you have a recurrence, usually where it's spread to one of four parts of your body bone, brain, liver, lung, in no particular order. And those two presentations are quite different. And I guess the difference principally is that with early stage breast cancer, it is usually kind of an interruption to your life and it can be a big interruption, but you do reclaim life and you create a new normal and life does resume a new pattern, and it's not really cancer centric. Once you have metastatic disease, you are often living a life that is much more cancer centric and cancer has changed. It's not an interruption. It's it's an integration, if you like. It's part of your life. The difference between the two groups of people having de novo metastatic disease or metastatic disease following recurrence is that the people who have de novo metastatic disease and I say this with great respect, are often kind of rookies because they've never been through cancer before. People who have metastatic disease on recurrence have already been around the cancer merry go round a few times. I'm not sure whether one is better or worse and really making the comparison is probably not all that useful, but it is a difference in how they experience this.
Kellie [00:08:13] So for de novo you’d be scared and the anxiety would spike, but in some ways it's unlikely that they know what's ahead. Whereas someone who's got a recurrence, they are experts. They've been through the process before and in some ways know what to expect.
Charlotte [00:08:35] Yeah, and it's weird how sometimes I see that in my clinic the people with early breast cancer diagnosis are scared of the unknown, and people with metastatic disease after recurrence are often scared of the known or a version of the known because they know what it was like. They know what it was like to have surgery or chemo or radiation or immuno or hormonal or all of the above and the idea of going back into that space that might feel on one hand, it's a perverse thing because I think on the one hand it probably feels a little bit like going back into a safe space because active treatment does often help make us feel safe, but also back into not a safe space. Because, you know, a lot of that treatment comes with some pretty serious side effects and a lot of downtime and a lot of need for recovery, both physical and psychological. So it's kind of counterintuitive. You know, it's like I'm being taught I've got to go back into that place that's probably going to hurt me. And that's not something humans do easily.
Kellie [00:09:30] And also something that's going to be part of my life forever now, it's not getting to the end of the tunnel because that is the tunnel.
Charlotte [00:09:39] And I guess that's one of the observations. And today really is about making observations because I don't know what it's like to live with metastatic disease. And so this is really about the observations that I've gathered over a long time working in this space. But I do see women living with metastatic disease as experts in this space. They are very much across the reality because they have to be. And the ones that do the best do seem to be those who, again, this is my constant language, they do lean into it. They find a way to integrate it into their life. Not that that means it all being cancer centric and that life is not all about cancer, but nor are they avoiding or denying the realities of living with metastatic disease. So they find a way to work with it rather than push against it.
Kellie [00:10:35] You mentioned language and how that is really important. Not only is metastatic a clumsy word like we've just mentioned, but also it could be very typical for people to use words like it's just this or it's only that. And with this broad spectrum, someone who's living with advanced disease versus someone who does have one bone met, it's a really big bucket to be in.
Charlotte [00:11:09] Yeah, it's a really big bucket to be in. And bucket is the word. I'm not sure if I referenced this in the first series, but I quite often will make the distinction to my clients that comparing is very rarely useful. There's an old saying which is “comparisons are odious”. So I draw pictures of buckets on my whiteboard and I label the bucket. This is the hardest thing I've ever had to deal with. And if your bucket is full, it doesn't matter what your bucket is full of. So if your bucket is full of one bone met or your bucket is full of metastases to many important organs, if your bucket is full then you’re bucket is full. And it's not a competition and it's not about using that language only or just. Those are diminishing words. And when we use them, I mean, it's terrible if someone uses them to you, but truthfully, we use them ourselves and we use them in our heads, you know, not even necessarily out loud, but it is important to recognise that this stuff is big and that if you're struggling with it, it's because it is big and that diminishing it and using words like “only” and “just” are not going to help make you feel better.
Kellie [00:12:15] Or “it could be worse”.
Charlotte [00:12:17] Yeah exactly, or “you're lucky that it's only that”.
Kellie [00:12:23] The reality is for those with metastatic disease is that you are constantly living under threat.
Charlotte [00:12:33] Exactly. You are living with the constant fear of disease progression.
Kellie [00:12:37] What are the ramifications of that in our daily lives? And psychologically.
Charlotte [00:12:42] It's very hard to separate yourself from the threat. In talking with Andrea, I know that she's a very capable woman, and one of the things that she found distressing and disappointing was that she would, after a recurrence or a disease progression, she would gather her mojo and she would feel like she was back in the game and feeling like her coping and her ability to manage was better and if you like, the level of protection that she felt was thicker. And then she would describe that when she'd experience another part of the progression, she would come apart all over again and it would be like she would be set back to zero. And this happened has happened to her more than once. And each time the experience itself is very destabilising and you feel vulnerable all over again. But I think it was also that she was sort of surprised and disappointed by that because she likes coping. We all like coping. And when you start to feel like you're coping and you think, okay, well I've been around this block a few times, maybe I've kind of got the hang of it, and yet you find yourself back at zero again and again, that is not a good feeling.
Kellie [00:14:07] Living under threat do you see people who are fearful to plan too far ahead?
Charlotte [00:14:14] Yes. A lot of clients with metastatic disease report that they feel like they can only plan maybe not longer than a year in advance. And, I mean, when you say that quickly, maybe that doesn't sound bad. But I mean, if you're in your middle years or, you know, even if you're in any years, really, and you're used to being able to think, okay, well, in a couple of years time we might save up and do that thing, or we might go to that place, or we might all come together and celebrate that big milestone occasion. But you're feeling like, well, I can't trust in the universe. I can't trust in my cancer situation to emotionally invest in that or potentially financially invest in that. But also, I just can't allow myself to have that much hype because the fall is too far if that proves not to be possible. So they sort of feel like they're living, much more year to year. And it's funny because in psychology we talk a lot about living in the moment, but it's another good example of where you can have too much of a good thing. You know, living in the moment is good if you're choosing to live in the moment, but living in the moment because you've got no option, that's not so great.
Kellie [00:15:27] Yeah, that's a that's an interesting thought, isn't it? Plus, we refer to metastatic disease now as a chronic illness, which is a bit of a double edged sword, isn't it?
Charlotte [00:15:38] Yes, it is. I mean, the classification of cancer or certainly advanced cancer as a chronic illness some time ago I think was probably done with absolutely good intent. And the truth is, I don't know the back story to it, but it probably was done with good intent because when we label things or classify things, we often give opportunity for understanding, but also for support services and funding. So if you give something a name, then the chances are someone's going to notice it and they're going to give it a budget line and you'll be able to get stuff done in that space. So I suspect that that's probably why it sits within the classification of a chronic illness. But I think for some people living with metastatic disease there are a lot of chronic illnesses that might be very much uncomfortable and might compromise the quality of life, but do not necessarily limit the extent of life. And metastatic disease does both. And I think that if you feel like I'm being perhaps lumped into the same classification as things that do not limit life or have the capacity to limit life, it can feel invalidating. It can feel like someone really doesn't understand what this is like. I think that to flip it around, it is important to recognise that coming to terms with and making allowances for and accepting the chronic nature of metastatic disease and that it is now a reality that you will do best if you find a way to integrate it and accept it. Again, that's probably part of the reason why we use language like chronic disease, because it can help facilitate that acceptance.
Kellie [00:17:29] The thing about metastatic disease is that it's not necessarily linear, is it? You can have one bone met which is at the lower end of the scale, if you like, but it can quickly change for whatever reason. So when we were talking about fear to plan too far ahead, it's that uncertainty. And even though life in general has no certainties, we all know that things can change quickly in a whole realm of situations. But with metastatic disease, it can change really quickly and there's no level of certainty with which you can plan.
Charlotte [00:18:08] No, that's right. It's not linear and so you can't sort of rely on the fact that just because I might be dealing with a milder version of metastatic disease, that it will remain that way. So often we talk in my consulting room about you don't know what's coming and anyone could get hit by a bus and I think living with metastatic disease is like you're standing in the middle of the highway. Sure, anyone can get hit by a bus but now I'm actually standing in the middle of the highway. It's a bit different. And I think in terms of how to plan and how to live. And what I see is that people with metastatic disease often do feel like not only can they not plan very far in advance, but they're often living scan to scan or medical review to medical review. And for a lot of people that can be in increments of three months and three months is not a very long time. You know, it's 12 or 13 weeks. And so that reassurance that we often feel after a scan or a medical appointment where someone might say things are stable, there's been no significant change, that's a lovely big burst of reassurance and I feel safe and I feel well and I can go back into my life and do the things I want to do. But that starts to wear off. And before you know it, it's almost like the shot clock in basketball, it's like that resets every medical visit. And then you're on a countdown to the next one and as you get closer...
Kellie [00:19:43] You get anxiety.
Charlotte [00:19:44] That's right. You get more and more scared. And so living in that space is is really challenging. And it does require, if you're going to cope best with that, fairly high attention to being able to engage in things that do fill up your cup and that do make you feel good and get you out of your head because otherwise you can spend way too much time with the shot clock.
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Charlotte [00:20:49] So one of the other things that I see in women living with metastatic disease is that they are incredibly resilient.
Kellie [00:20:57] I really want to groan here.
Charlotte [00:20:58] Yeah, I know. It's one of those words, isn't it? Yeah, I've thought about that and I've thought about how to say resilient in a way that sounds really respectful and not sort of Pollyanna.
Kellie [00:21:12] And do they have a choice?
Charlotte [00:21:13] Yeah, exactly and it does fall into that category of when people say “oh, you’re so amazing” and it's like, well, you know, sure. But like, what's the alternative? Like what? What else do you think I'm going to do?
Kellie [00:21:25] So when you say resilient, are you saying that because with progression, they're on the rollercoaster of the up and the down and the results based, and then the clock starts again? Is it the resilience to absorb the information and then get on with it?
Charlotte [00:21:45] I think it's just the resilience to just keep going. It's just to keep going in the face of a very high degree of uncertainty about your life. So it's not just uncertainty, but it's uncertainty about how long you might live and what the quality of that time looks like. So I think it is about perseverance and in the face of what seems like really hideous circumstances.
Kellie [00:22:16] And the shock can't get any less, even though your rational mind knows that it's progression and because it's not curable, that it's only going one way along a timeline that you're uncertain of. But even when it does come, it must still be a shock. Do you ever get immune to the shock?
Charlotte [00:22:40] No, you don't. And I think that's again what talking to Andrea highlighted as well as what I see clinically is that if we use the analogy of original diagnosis, whether de novo or early breast cancer as being like having a gun pulled in your face. When you have disease progression, I think it's just the same again. Like if someone pulls a gun in my face once and then they pull a gun in my face another time, it doesn't feel any better, it doesn't feel any easier, it doesn't feel any less terrifying. So I don't think that you do have the ability or the benefit of repeat experience. I think it's one of those things where we are hardwired to survive at a very primitive level. We have a part of our psychological system which is designed to react to a threat to our life. So the words, the language, the news of our disease progression within a metastatic context is effectively like having a gun put on you. It is another threat to your life. It's bringing the timeline perhaps forward.
Kellie [00:23:55] I want to say it sounds really bittersweet because whilst you continue to integrate cancer treatment into your life, you're still able to participate and enjoy, we hope, experiences. But there's a lot of conflicting emotions because you're enjoying that, you know what’s ahead.
Charlotte [00:24:22] Yeah, I don't want to sound glib about this, but people can live for many years with metastatic disease. So there are circumstances where a metastatic prognosis can mean that things are very time limited but there are also many instances where people live a long time. Not perhaps nearly as long as they'd like, but a long time with metastatic disease. And that does introduce this idea, of experiencing the big milestones of life, but with an edge and that kind of feeling of like wonderful to be at the birth of my first granddaughter or grandson, and then I'm acutely aware that I'm not sure how long I'm going to live, you know. Will I see them go to kindy? Will I see them get to primary school? Will I even be here next year to hold them? So everything has two sides and has an edge to it. Again, I see that a lot. And that's why we call this episode bittersweet because it's like all of the most joyful experiences that anyone might have are laced with this bitterness, with this reality, with the awareness that things are different for someone living with metastatic disease. And we can't take those moments perhaps for granted the way that we would where we're not in that situation.
Kellie [00:25:51] So this could be really isolating. That feeling of bittersweet, of being grateful that you're able to participate and loving every moment. So can it be isolating? Can it?
Charlotte [00:26:04] Yep. Because everyone around you who's not living with metastatic disease is probably pretty reasonably caught up in the joyful moments. And because people take in information through their eyes, if you're at some sort of a social situation or a family scenario where you're dressed and perhaps got some makeup on and you're talking and walking and looking like a human, people take in information through their eyes and I know I say that a lot, but it honestly explains so many reactions in other people. If you're looking reasonably okay and behaving reasonably okay, people will make the assumption that you are reasonably okay and they can't read your mind. And even if in reality maybe you are in a metastatic context, you are perhaps doing all right, that doesn't mean that you aren't feeling those really strong conflicting emotions. And human beings don't like conflicting emotions. We like simple. We like to feel happy or just like to feel sad or scared, but to feel happy and sad and scared all at once, that can feel like a lot. And you can have all of that going on inside you and look exactly the same as if you are daydreaming about what colour shirt you're going to buy next week. So it's very hard for people around you to get it and it's very understandable if you feel like no one is getting it because no one is actually living the reality that you are.
Kellie [00:27:33] And we do know that many times with metastatic disease, lots of people have their hair, lots of people have really good skin. And like you said, it's easy to forget if someone is doing the school run or out and about that they're actually living with metastatic disease.
Charlotte [00:27:53] And I have a lot of clients who dedicate a lot of their life to being as well as they can. So they are doing things like managing their exercise, their nutrition, their alcohol intake, their sleep. And so they might actually look pretty good because they are investing in themselves in a way that maybe they haven't before. And again, that stuff can be misinterpreted by other people. They can think, oh, you know, she must be fine. You know, she's out walking every day or she's looking amazing.
Kellie [00:28:29] Or maybe she's in remission.
Charlotte [00:28:30] Yes, exactly. That's right. Yep. And whilst certainly there's more awareness and education around all sorts of cancers in Australia generally, there's still a lot that is not understood. And those who've been diagnosed going through it, you know I talk about cancer a lot, but do you know what the truth is? I probably talk about it less to my family and friends now than I ever did. That's just what we do. We dry up on it a bit.
Kellie [00:28:58] Is that because you feel that they're sick of it? Because that could be the other thing with a metastatic disease that can go on for a long time is fatigue.
Charlotte [00:29:10] Yeah, people get fatigued, people get busy. People feel like they've heard all there is to hear. They might feel exhausted or bored by a life that has become a lot about cancer. They might not necessarily say all of these things and sometimes, you know, that might be our perception and it may not be reality. Because if we're feeling a bit bored with it or we're feeling a bit fatigued by it, often we can make the assumption that if that's how it's feeling to me, then I can assume (and that's the dangerous word), I can assume that's how other people are interpreting it as well. And look, you know, I wish we lived in a world where that wasn't possible, but it could be. You know, I certainly do know that some family members and friends can tire of a cancer situation, but I think it probably is beholden on the person who is going through the cancer experience, the metastatic experience, to make time occasionally to remind people it's not gone and it isn't going away.
Kellie [00:30:17] While some people want to go the moderate road and take a step back and and go slowly. You know, it's like the tortoise to get the long race, do you see some people that just decide I'm going big because time's running out and I'm going to throw that massive party. Or conversely, do you see family and friends that go, we don't know how long we're going to have you, so we're going to go big?
Charlotte [00:30:51] Yeah, it's interesting you ask that question because only in the last couple of weeks I've had a client, Nicole, who generously let me share her story about this, that there can be a sense that those big occasions are really laced with the diagnosis, the prognosis, and that something like in Nicole's case a 50th birthday felt, at least her perception was that her family and friends kind of really wanted something really big, a big celebration for her birthday, and that kind of felt very cancer centric. It felt like almost highlighting her metastatic disease status. And, you know, that becoming almost the focus. And that didn't feel right for her. She didn't want a cancer centric 50th birthday, even if she wasn't right and that's not what her friends were thinking. She didn't want to feel like that. So she set up a number of smaller birthday celebrations that feel much less loaded and laced with cancer. And that's working really well for her. And I think, again, it's very individual. And for some people they might want to perhaps seize the day. And even if they don't want to highlight the idea that cancer might be having an effect on the length or the quality of their life, they might want to go big. They might want to, like, really make the most of the time that they have. Not very many people that I talk to want it to be about the cancer. They're pretty sick of the whole cancer thing. I think they like the idea of it being perhaps about their family and celebrating with their loved ones or their friends, and about them as people, but not necessarily as them as a person connected all to cancer.
Kellie [00:32:47] How do you deal with a situation that you can't change?
Charlotte [00:32:53] And again, my lean in is my best advice is that if we're faced with a scenario that is outside our control and that it doesn't matter what we or our oncologist or surgeon or our medical team can do to take away that situation then, and I know this might sound tricky because it is tricky, is to make it work for you the best way you can is to lean into it and to find a vision, create a version of life that accommodates those things that you can't control and gives you the chance to live the version of life in a way that is best aligned with your values and what matters to you and fills up your cup the most.
Kellie [00:33:44] With a metastatic diagnosis is there room for hope? Because we see so often that even though it is not curable, that doesn't stop people from hoping that there will be a cure in their lifetime or that something will be invented to give them a longer life?
Charlotte [00:34:09] Yeah so I talk a lot about hope. And in fact, years ago I was asked to speak on the topic of hope. And because I don't like being caught short, I went home and looked up the definition of hope. And essentially it's the reason we get out of bed in the morning. Without hope, obviously, we are hopeless and that looks like despair and that's not good for anybody. So hope is really important. But as I again say, all that often, you can have too much of a good thing. So I make the distinction between what I call realistic optimism, which is hope, and unrealistic optimism, which I call denial. So realistic optimism is this idea that you have hope. A little bit like if you imagine in your mind's eye, like you're holding on to a balloon, so you've got your balloon of hope going but you've got your feet planted on the ground. So you are living in reality, but with hope. Unrealistic optimism is where that balloon of hope takes you off the ground and you're flying too high. And the problem with that is that when you do have to inevitably, and this is the problem with living with metastatic disease, is that inevitably at some point you will have to confront reality. Is that then the distance to fall when you are floating high is so much further. And the a pain of that fall is so much greater. So interestingly, denial and avoidance are in the same family. And I've touched on avoidance when we were talking about anxiety in an earlier episode. But avoidance is the very normal behaviour that the humans engage in when they feel a level of discomfort, emotional discomfort, all sorts of discomfort. And so if you are noticing that you're the sort of person who doesn't kind of confront things and does do a bit more avoiding by nature, then it can be worth just examining whether your level of optimism around your metastatic situation falls into the camp of hope or whether getting a little bit away from you and possibly bleeding into the camp of denial. Most people are in hope. Every so often I will have a client who is experiencing denial, but most people are able to keep their feet grounded in reality and part of that is because they are reminded all too often of the reality of their situation with the frequency of medical appointments and scans and bloods. So there's not often a lot of opportunity to get that balloon flying too high because you're brought back to Earth fairly regularly by fairly frank conversations with your medical team.
Kellie [00:37:05] When you talk about avoidance, are you saying that those that avoid don't have discussions with their family about the reality or they don't want to go there? And what is the consequence of that?
Charlotte [00:37:21] Yeah, I mean, avoidance can manifest in all sorts of ways. It can typically behaviourally, but absolutely it can in terms of the way that we acknowledge the situation that we're living with. So if we aren't talking about it out loud to anyone, then that can feel like it’s not real, it's not as bad as I have been told. But really importantly, because so many people living with metastatic disease experience high levels of emotional isolation, if they don't share with loved ones or trusted people in their network, then because people can't read their minds, it prevents their loved ones, the people who really do care about them, from being able to best support them because they don't know what's going on with them. And that's again another example of where we can end up getting more of what we don't want.
Kellie [00:38:18] Sounds very stressful.
Charlotte [00:38:20] Yes, it can be very stressful. And living with metastatic disease can be very stressful. And in the last episode we were talking about managing stress levels and again, medical teams, not just your psychologist, but your oncologist may very well talk to you about wanting to make sure that you’re managing your stress levels and that we're creating a life that is not over full of stress. And this comes back to identifying what you can control and working on those parts of your life and being able to more be accepting of the things that are outside your control.
Kellie [00:38:58] You are saying a psychologist, someone like you, the reality is in Australia that quite often finding psychological support is really difficult.
Charlotte [00:39:12] Yeah, it's really difficult and at the moment we've got about a third of the workforce is effectively unavailable because their books are closed or their waiting lists are just impossibly long. What I would say to people is that if you're listening to what we're talking about today, this episode or any episodes and you feel like I could really do with some support in this space, get yourself on a waiting list. The waiting lists work, and also when people understand the nature of your situation, sometimes waiting lists are triaged, which means that people evidently in need are accelerated through the waiting list. That doesn't always happen, but it can. So what I would say is, yes, don't sit back and assume that just because you hear that it's hard to get a psychologist that you don't actually try and get into a psychologist. It's not for everybody but it does seem to help a lot of people.
Kellie [00:40:10] And as we've said before, quite often exercise is seen as that magic pill. And that's not going to fix things or change outcomes but can it reduce your stress or that psychological combustion if you like.
Charlotte [00:40:27] Yeah. I mean, I talk about exercise as nature's antidote. And it is the one thing that almost all of us can do, regardless of location and circumstances in almost anyway. So exercise will definitely help manage stress. It will help with keeping you grounded. I've been reminded, though, that people living with metastatic disease are often dealing with advanced disease and the disease itself but also the side effects of treatment can have limiting effects on your ability to exercise the way that you might have imagined you would. So I don't want to minimise the reality that living with metastatic disease can have some really physical, practical limitations. But again, I come back to working within your limits and focusing on what you can control and accepting what you can't. And so that might mean that you have to get creative about what sort of exercise is right for you. But I still think that's worth something. ---
Kellie [00:41:37] So it's more about moving or doing something.
Charlotte [00:41:39] Exactly. It's about moving and doing something rather than maybe the more formal definition of exercise, like an hour in the gym. It doesn't have to be that at all. Walking is magnificent. Walking is a superpower.
Kellie [00:41:53] Do you find clients that struggle with people's pity?
Charlotte [00:41:59] Yeah. We need, like, a pity bucket I reckon. Nobody likes pity. I haven’t met anyone who likes pity. Compassion, yes, but not pity. And I think, again, that plays into why sometimes living with metastatic disease there can be a reduction in communication because people are fearful of pity and they don't want to be cancer girl, they don't want to live a cancer centric life. And so finding that balance between letting people know the status of things, but also not placing yourself in a situation where you're vulnerable to being pitied is a hard place to find. But again, I say always transparency and authenticity, calling it out and saying, putting a label on it and saying, do you know what? I am not up for pity. So I if there is any pity going on here, let’s not be doing that. And actually use the word and let people know because that's sometimes the way that we clue people in on what does and doesn't work for us.
Kellie [00:43:06] It's tough, though, isn't it? There's no denying that that living with metastatic disease is tough.
Charlotte [00:43:14] It's so tough. And I'm just thinking about one of the other things that Andrea was reflecting on with me. I think the language that she used was that she's required to constantly renegotiate priorities. So just when she feels like she's got a rhythm going and she's got life working pretty well, she's maybe got work stuff, family stuff, friends stuff and health stuff, and she's got a rhythm going and things are feeling a bit under control that then something happens out of nowhere again. And so you have to then arrange your whole totem pole around what's the most important thing? What have I got to focus on? What have I got to set down, set aside? Who have I got to tell? What can I reasonably expect from my employer, from my family, from my friends? And to do that once, this is where speaking from my experience with early breast cancer, to do that once was phenomenal and exhausting. But to have to do that over and over again and to know that you're going to have to continue to do that over and over again, that's where I come back to that resilience observation, because I just think being able to keep going in the face of that knowledge is quite something.
Kellie [00:44:34] How important is peer support?
Charlotte [00:44:37] It's so important because it gives you the opportunity for empathy. And we talked a lot about this in episode three of series one where I said, go where you're understood. And this is where things like, again, the peer to peer support network at BCNA, can be so helpful because relating to people who are going through something as intense as a metastatic experience versus your loved ones who might love you dearly and support you as well as they possibly can, but for no fault of their own, simply cannot really understand what it's like to live with that ticking clock all the time. Having access to people who get it can offset that emotional isolation. That's valuable, really valuable. And I think one other observation that I would make about people living with metastatic disease is that it seems to place their life, their experience into this space of artificial intensity where it can feel like they've got to live each day almost as if it's their last, except that it isn't. And that's a really hard place to be. It's sort of dials up the intensity on everything. Everything's a bit sharper, the colours are a bit brighter, the pain's a bit more acute and I don't know that there's an answer for that, but I think that it is important to just be aware that if you're feeling like the day’s passed and I've just gone to work, I've just done the standard, dropped the kids off, done all the domestics, paid a few bills, picked the kids up and it's 5:00pm and I haven't really made this day count. I hear that a lot. And there's a sense of a combination of guilt and disappointment and regret, but also like I can't go time walking or climbing mountains or skydiving every day. You know, I can't do that because who's going to pick up the kids from school? But also, I can't do that because my bank balance won't allow it. And so, again, it's finding a way to live life within that artificial intensity, with also acknowledging the practical realities of the life that you have.
Kellie [00:47:01] So true. Thanks, Dr. Charlotte, for this really important discussion on metastatic disease. And as Charlotte mentioned earlier, BCNA has many resources that you might find valuable, such as My Journey and the Online Network- it's a wonderful place for peer support if and when you need it. And if you found this episode helpful, please share it with someone you know. And if you don't want to miss an episode of Upfront About Breast Cancer, then be sure to subscribe. All your feedback is greatly appreciated, it ensures we are delivering content our community needs and wants. Coming up in our next episode is the Re-entry wobbles: how to restart life after cancer treatment. You've been listening to Upfront About Breast Cancer, What You Don't Know Until You Do: Unlimited with Dr. Charlotte Tottman.
Ad [00:47:54] Looking for practical information to help you make decisions about your diagnosis with a disease early or metastatic breast cancer. BCNA’s My Journey features articles, webcasts, videos and podcasts about breast cancer during treatment and beyond to help you, your friends and family as you progress through your journey. It also features a symptom tracker to help you manage the changing symptoms you may encounter during your own breast cancer experience. My Journey. Download the app or sign up online at my journey.org.au. Coming up in episode five of upfront about breast cancer What you don't know until you do unlimited with Dr. Charlotte Tottman. Re-entry wobbles: Restarting life after cancer treatment.
Charlotte [00:48:41] So I think what happens is people go back into the work environment and they want to be their old selves. They want to be that person they were before cancer diagnosis and treatment. And they are bothered pretty reasonably by the fact that they don't feel like the same person and they don't have the same confidence to do the stuff they used to do without even thinking. They used to be able to do it with their eyes closed, their hands tied behind their back, and now they're feeling like, Oh, I'm second guessing myself, developing that psychological flexibility and being able to gauge, you know what, if we need to do things a bit differently now post cancer, that's not a bad thing. It might not be the first model that you come up with. It's the right one. But I really like flexibility and I really like the idea that we play with that in the post treatment adjustment space. And we don't just accept or expect that the only way to do this and to navigate this space is to go back to how it was before, because it doesn't work.
Ad [00:49:36] This podcast is proudly brought to you by Sussan. Our theme music is by the late Tara Simmons. Breast Cancer Network Australia acknowledges the traditional owners of the land and we pay our respects to the elders past, present and emerging. This episode is produced on Wurundjeri land of the Kulin Nation.
Samantha was diagnosed with stage three breast cancer in 2014, followed by metastatic breast cancer in 2019.
Alison shares her experience of living with breast cancer. From the intensity of diagnosis to the life lessons she’s learned along the way
Strategies to help those affected by an early breast cancer diagnosis
Reduce stress and enhance wellbeing during breast cancer care
Let’s be upfront about behavioural changes.
Let’s be upfront about anxiety in a cancer context.
Welcome to What You Don’t Know Until You Do: Unlimited, with Dr Charlotte Tottman.