After a cancer diagnosis and treatment, you often discover you are not able to operate at the same level as you did pre-cancer, physically, cognitively and emotionally. In this episode, Charlotte explains the importance of boundary setting in self-care, particularly in relation to the challenges in continuing to care for loved ones while navigating a cancer experience, and the role of guilt in this.
We learn about how to identify your limits and act on them, communicate to others and ourselves, and how to identify alternative helpful activities and prioritise them.
This podcast was recorded in 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 helpline@bcna.org.au.
Voiceover [00:00:08] This podcast is proudly brought to you by Breast Cancer Network Australia. BCNA’s Online Network is a friendly space where people affected by breast cancer connect and share their experiences in a safe online community of support and understanding. Read posts, write your own, ask a question, start a discussion and support others. You're always connected, which means you're never alone. As our online network is available to you at every stage of your breast cancer journey, as well as your family, partner and friends. For more information, visit bcna.org.au/onlinenetwork. Welcome to Upfront about Breast cancer: What You Don’t Know Until You Do – Unlimited with Dr. Charlotte Tottman.
Kellie [00:00:56] Thanks for joining us. I'm Kelly Curtain. And this is Upfront about Breast cancer: What You Don’t Know Until You Do – Unlimited with Dr. Charlotte Tottman, a clinical psychologist specialising in cancer distress. This is the second series. It's called Unlimited. And it's a little different from the first Charlotte. Tell us how.
Charlotte [00:01:15] Hi, Kellie. So in the first series, I guess we could say that it was very much limited to my own experience of breast cancer diagnosis and treatment and then making sense of some of that from my professional perspective as a clinical psychologist. In the second series, we're not limiting our discussion to just the things that I've experienced. So we're going a bit broader and tackling some of the, I guess, some of the more meaty issues.
Kellie [00:01:41] Right. Okay. Well, in this episode, we're going to explore the power of saying no, after a cancer diagnosis and treatment. You often discover you're not able to operate at the same level as you did pre-cancer physically, cognitively and emotionally. Charlotte's going to help us understand the importance of boundary setting in self-care and why saying no can be empowering. This episode of Upfront About Breast Cancer is unscripted. The topics discussed are not intended to replace medical advice, nor represent the full spectrum of experience or clinical option. We advise you to exercise self-care when listening.
Kellie [00:02:20] ‘No’ Charlotte
Charlotte [00:02:22] ‘No’ is the sentence. Very wise words not said by me initially. I think it might have been that I first heard that phrase when Oprah travelled around Australia quite a few years ago and I didn't go and see her, but a friend of mine did. And I said, tell me what I missed and she said, No is a sentence. And I was like, Oh, I love that. That sounds really good.
Kellie [00:02:46] What does it mean, though?
Charlotte [00:02:47] It means that instead of justifying, excusing, you know, giving someone else a reason for why we might set a boundary or a limit that we just actually say effectively, no, that doesn't work for me. So it reflects an ability to, I guess, live a life more on our own terms and be less bothered about maybe the judgement or the impact on others of doing that.
Kellie [00:03:16] It sounds easy in, you know, in theory, and we'll get to that in a minute, but it's almost like whether we do it intuitively or whether we're being socially. Yeah, you know, brought up to believe that when you say no, you need to say why you're saying no.
Charlotte [00:03:31] And I think women in particular are socialised around saying yes about being agreeable, about going along to get along and subordinating their own needs. So that means putting their own needs below the needs of others, particularly the needs of loved ones. And so it can feel foreign, counterintuitive, like you're breaking a social rule or like you're breaking your own rules to start saying no when you maybe haven't had much practice of doing that, or if you have on occasion tried and it hasn't gone very well because people around us don't necessarily like a boundary or a limit being set where there hasn't been one before. And we educate people about what to expect by our own behaviours. So, if we've solved all the problems being there, doing everything for everyone for several decades, guess what they expect, just going to keep on doing that. And if you start to go, well, I'm not going to not do anything, but maybe I'm not going to keep doing everything, that does sometimes cause ripples and pushbacks. And we're going to talk about that in a bit.
Kellie [00:04:37] And as you've said before, we don't usually like change. So we're talking about saying no and setting boundaries in a cancer context. And it's fair to say that upon diagnosis and treatment, they have what you call natural boundaries.
Charlotte [00:04:56] Yeah, I think during treatment there is a lot of latitude and there's a real understanding and acceptance in loved ones and workplaces, probably in just about every part of your life that like you need to do you, you need to look after you and that it's perfectly reasonable and actually more than reasonable, it's required for the priority to be on you surviving and managing that time period in whatever way you need to. Where it can get tricky is when we get back into that post treatment adjustment stage that we've referenced so often in this series. And last, where it's about reclaiming life and recreating or creating the new normal. And that's where often we both perhaps need to and perhaps want to set our life up in a way that's a little bit different to the way it was pre-cancer. And that's where it can get a little bit interesting.
Kellie [00:05:49] So we're talking post treatment time, which can you remind us how long that can actually be?
Charlotte [00:05:55] Yep. So from the end of hospital-based treatment, post treatment adjustment lasts at least two years and for a lot of people a lot longer. I'm four years plus from the end of my treatment and I definitely still feel like I'm figuring this stuff out. So, I mean, I think I say two years because people like numbers. It's good to set an expectation, but it isn't two years. It's at least two years. And the God's honest truth is I'm not even sure, you know, if there is an endpoint. I'm not sure that there is a point where you go, Oh, I'm all there now. I think it is harder at the beginning and you do kind of feel like you get a little bit more of the hang of the post-treatment life as you go further on from diagnosis and treatment. But it's a long time.
Kellie [00:06:40] So during this post treatment adjustment or after hospital-based treatment and things are starting to pick up again, re-entering life. Yeah. We've also talked about the snow globe theory where on a cancer diagnosis your whole life gets thrown up into shaken up in it and then it comes down and sometimes the pieces of your life and your priorities land in a different order. You know that this has happened where you feel it about what you want, what you don't want. But many people don't know that this has happened to you. And this is when I expect that you're going to start setting these new boundaries. Which is a little bit sometimes difficult for you to communicate, but it's news to everyone else.
Charlotte [00:07:26] Yeah, exactly. And I think this is where I make the distinction between the boundaries that we probably might feel that we would like to make because of that snow globe effect where it's like, I want to do my life differently. I've got a do over, I've got a second chance, a bit of a reset. And so, I am going to say, no more. That's one sort of boundary setting. There's the other sort of boundary setting, which is where because of changes to things like our stamina and capacity, the fact that we are physically not the same as we were pre-cancer, we need to set some boundaries. So I think we can talk about it in two ways. So the one that you were just mentioning then about that snow globe effect, and that's where it might be that I want to make some changes. The main thing about boundary setting is that it's about where I need to live life on my own terms and be clear about what we will and won't accept. It's where it bumps up against other people. So boundary setting sits in the same sort of camp as behaviour change, which we talked about in a previous episode. But behaviour change is more about like me personally, what I'm going to do to change my life. And I don't necessarily need to be communicating about it to others because it's more about the changes I make that affect me directly. Boundary setting is more about the changes that I'm making that might then affect my relationship with other people, my interactions with other people. So it's not about telling other people what to do at all, but it is about communicating, getting clear, and then communicating the changes that I need to make in terms of what I'm prepared to accept or what I'm able to accept. And that might be around, you know, work stuff, social stuff, health stuff. It can be about any part of life.
Kellie [00:09:06] This sounds challenging because when you're coming out of the treatment, which is when a lot of people step up for you and a lot of things go on pause while you get treatment, there might be some guilt and need to almost really step up, almost overcorrection, which we've talked about before, because you've stepped up for me and I've said no, and everyone's stepped back so I can get better. And then to say, well, actually there's going to be some more, How do you feel about this? And like you just said, when it means change to other people's lives as a result, it's easier said than done.
Charlotte [00:09:48] Absolutely. And that's one of the reasons that we don't do it. So at the front end of post treatment adjustment, I think I'd probably be right in saying that, you know, everyone, not everyone, but most people are pretty enthusiastic to get back to something approximating that normal life they had before cancer. And it takes a while for the penny to drop that that's not going to be possible. And that might be weeks, might be months, might even be longer. And so it isn't I don't think it's a, you know, in the first week after I finish hospital-based treatment, I've got my whole boundary band resetting agenda going. I don't think that happens. I think it dawns on people gradually and often through their own kind of experience of this new normal and realising that there are some new natural limits. So there are some new things that they simply can't do, and that that awareness, that creeping awareness of like, well, do I really want to keep going back and doing life the way it was before? Because I'm not that happy with how that feels. But developing that awareness and translating that into action. I mean, that's often not an overnight thing. And it can, just like with behaviour change, there can be all sorts of obstacles to it.
Kellie [00:11:04] The first thing that comes to mind would be things that make you fatigued. Like trying too hard to get back into full time work or whatever work you were doing, or picking up the school runs again or doing whatever you were doing. Are there other ways that you feel that you need to reassess? Is it just about fatigue?
Charlotte [00:11:26] No, I think I think sometimes it's about physical fatigue. Sometimes it's about physical and emotional fatigue and feeling sort of like swamped or overwhelmed. I was reflecting on this this morning and thinking, okay, well, if you were new to the whole idea of boundary setting and you were trying to figure out how am I supposed to know if I need to set some boundaries, I thought if you're starting to feel like almost like an octopus, like you're being pulled in multiple different directions by multiple different forces in your life, you know? So like family, work, if you're caring for ageing parents and children, you've got to manage your relationships, your friendships and your health stuff and your self-care stuff, and you feel like that's just pulling you in all these different directions and it's starting to feel like you are exhausted and overwhelmed, but possibly in addition to that, that you might be starting to feel resentful and aggrieved and possibly even a bit taken for granted. If you're getting into that space.
Kellie [00:12:24] I don't think you need cancer to…
Charlotte [00:12:26] …get there. Well, isn't that the truth? I mean, that's and that's where look, you know, people who are listening to this who, you know, might be loved ones of someone going through cancer might be sitting there thinking, yeah, I mean, God, I'm there and I haven't had cancer.
Kellie [00:12:39] I am one octopus.
Charlotte [00:12:40] Exactly. I am. That's right. And that's the truth, isn't it, that I think a cancer experience does perhaps bring to the surface and perhaps give us the license and opportunity to give stuff like this a focus, whereas we might have previously gone I won't, or I can't, or I shouldn't give that the attention that it so clearly deserves. So yeah, boundary setting is not just for people who've been through cancer, boundary setting’s a good thing for anybody who's feeling like that octopus. So if you're feeling like that, and particularly if you're getting to that point where you're feeling overwhelmed, resentful, and possibly like you being taken for granted, that's a sign that it's perhaps a good time to start doing some boundary setting.
Kellie [00:13:24] So traditionally people tend to put others before themselves. And then there's you. What's the way that you can explain boundary setting? It is the behaviour of priority setting?
Charlotte [00:13:38] Yeah. I mean sometimes thinking about what's your totem pole in your life. So what's the most important thing for me right now? And I think what people find in the aftermath of cancer treatment is that the need for recovery and rehabilitation and self-care becomes much more important and there is a willingness to prioritise it because things have been so grim, but also because of that fear of recurrence stuff. So I really do need to look after myself if I'm going to be here, you know, in the long term for me, but also for my family. So I think it's about then rejigging the priorities in your life. And again, that's not that hard to do in your head, it's much harder to actually translate into action. And probably one of the hardest parts is the communicating of that to other people, because it's that thing of like confronting the uncomfortable conversations. In this series there have been a lot of times when we've referenced discomfort and uncomfortable conversations and how the tendency in humans is to avoid, but also that if you want change, it almost always involves a conversation.
Kellie [00:14:47] Okay, so at the beginning of this episode, we were saying no is a complete sentence. And it's about learning to say no without feeling like you have to explain why, but now you've just said to me that it's about having a conversation.
Charlotte [00:15:04] So it's a short conversation!
Kellie [00:15:08] So you should say no exclamation mark.
Charlotte [00:15:12] I'm glad you said this because exactly that. When I'm talking to my clients in session and we talk about saying no, you can see the whites of people's eyes and it's like, Oh, this sounds all very well, Charlotte, but like, Oh my God, do you really think I'm just going to be able to stand in front of my husband or my children or my aged parents or my work colleagues or my manager or my friends and just say, no.
Kellie [00:15:38] There is a button for that that you can buy them at the two dollar shop so you just hit it and it goes, ‘No!’ So there's many different ways to say no.
Charlotte [00:15:46] That's right. So I then talk about hard no’s and soft no's, and this is where a soft no is probably more in the realm of a conversation. So you can do a hard no, but I'm not sure there are too many people who, particularly at the beginning of their boundary setting experience, are going to be all that comfortable just wading straight into hard no territory. I reckon you can get there but I think to begin with, you're probably going to play with some soft no’s. So soft no’s are more like, No thank you. No, not this time, not today. No I can't do all of that or I can't come for the whole thing. Or perhaps we could do that together or no, that just doesn't work for me this time. I'm going to do me, you do you, that sort of thing. So, there are ways of saying no without an explanation or an excuse, but with a softener, if you like. And also we talk in psychology about trying to stay away from binary situations. So, where we try not to ask questions, where there's a yes or no answer, we try to ask open questions where people can describe how they’re feeling rather than are you feeling angry? Yes. No. It's like, tell me how you're feeling. So in that vein, setting a boundary that's very hard, which is just yes or no, like would you like to come to the barbecue on Saturday afternoon? And no is very like I'm not coming at all. Versus yes, I feel like I'm doing something perhaps that I don't have the energy for or I really just don't want to do. But it might be more like a soft no, which is I'm not sure I might need to see how I'm feeling on the day or I think I might just pop in for a for a drink or I might be out to just come for a while, but I probably won't be there for the whole time. So it's about finding that, again, it's the flexibility stuff, but it's also finding a way to do perhaps a part of it that works for you without all of the bit that maybe doesn't. So it's doing it on your terms. It's doing what works for you and what you can accept.
Kellie [00:17:48] It almost sounds like it needs a little bit of practice because you must instantly go ‘not at the moment because...’
Charlotte [00:17:56] Yes, absolutely. And whenever I'm working on new strategies with clients, again, it's a bit like that behaviour change episode we were talking about where you're not going to get it right 100% of the time and that's okay. And so even if you do it a couple of times in the next week and you only get it right once, that's all right, you're in front. But it's about actually then doing the little reflective loop afterwards and thinking, okay, how did that feel and how did that go? Did it work? Did I manage to effectively set the boundary? What was the reaction from the other party? Do I feel better about having said it? Could I perhaps try and do it again? And so having that little reflective loop gives you the opportunity to kind of tap into the experience and go, Right, okay, well, it was tricky, but actually it wasn't a bad outcome. Reckon I can do it again. The other thing that I do suggest, and I referenced this, I think when we were talking about your relationship with your medical team is that in your conversational communication with other people you can use the word ‘practising’, so you can say I am practising my boundary setting skills. I know it sounds naff, but it works. And I've actually done it. I was invited to something quite a while ago now. I felt like I should go. I didn't want to go, so I said I'm practising self-care and boundary setting. Have a drink for me, catch you on the next one. And I got a really positive response. I felt quite nervous doing it because I was worried about FONEBO, fear of negative evaluation by others for those who haven't heard our previous discussions on that subject, but I was worried about, you know, judgement but I didn't get any, in fact probably got positive judgement. I got like a thumbs up go you and that felt really good because it was like not only was my boundary being accepted, it was being endorsed.
Kellie [00:19:49] To your face anyway.
Charlotte [00:19:50] Yeah, well, yeah, I think it was legit.
Kellie [00:19:53] The reality is, as we've talked about before, whether it's your co-workers, your children, your partner, whatever. Your friends and your loved ones probably liked you the way you were.
Charlotte [00:20:07] Yeah. Human beings don't like change and it suits everyone else for us to go back to how we were, the status quo, the familiar is effortless, you know. It requires no resources to be allocated to accommodate the change, to regulate the change. And so absolutely. Would they rather we didn't set a new boundary? Probably most of the time. And that does mean and this is what I mentioned at the beginning, it does mean that you should be ready for ripples and pushback, which means that if you do set a boundary where there hasn't been one before, if you imagine it like a like putting in a fence where they didn't used to be one, and so someone who didn't know that fence was ever there comes barrelling along and ploughs into that fence. It's unlikely they're going to be that happy about that. When did that go and did that go up? No one told me that was going to happen and that really didn't work for me. And this, again, is also where I remind my clients that boundary setting is often a two step process. So if again, if you think about it from the point of view of putting in maybe a fence post, when you put in that fence post, you can feel quite chuffed. You can feel like, oh, go me, you know, dug a hole, put in a post that worked pretty well. It's standing upright. Everyone's going to be able to know it's there, not necessarily, so when they crash into it. It's not always the case that they then go, okay, well, I now accept that that's there. Sometimes people will then try and wobble that fence post to try and like.
Kellie [00:21:40] Is this permanent?
Charlotte [00:21:41] Yeah, that's right. Yeah. What's that doing there. I think might just get rid of that now. And so if I have you in my consulting room, what you'd say is me use my hands to put the fence post in and then my other hand to hold tight onto that fence post and go right. And that's the second bit. And, and actually I think of the two step process. The second step is probably the harder one, because that's when all of your old behaviour, all of your default, if you like, of kind of capitulating or prioritising others or just kind of going, oh, you know, like it's what I always used to do, that's when you're most likely to slip back into that when you get the challenge. And the second part of it also is that setting the first bit, the first step, putting the fence post in the ground. You're doing it with awareness and knowledge. It's like you've gone out and you've bought the fence post and you've dug the hole and you've put it in. You knew you were going to do that. The wobble, the attempt to take the fence post out often comes when you're not prepared. It's like somebody you know responds to you and you weren’t like waiting there for that wobble. And that can also throw you because it's like, Oh God, I didn't see that coming. And before I even knew it, I was back to saying yes.
Kellie [00:22:47] And possibly my post doesn't belong there. Maybe I should take it out.
Charlotte [00:22:50] Absolutely. And that feeling of like, you know, what were you thinking? And that's again, where we come back to things like guilt, you know, feeling uncomfortable, like we've broken our own rule, like we somehow have done the wrong thing by prioritising ourselves. And unfortunately, you know, there will be people who will have people have had, I say, loved ones. They'll have people in their family and friend network who perhaps will make them feel like it isn't okay for them to have set that boundary. And so again, there can be pressure to go back to the way things were.
Kellie [00:23:23] Because the treatment is done now.
Charlotte [00:23:25] Because the treatment is done now, because it works for everyone else, for you to be back to how you were before and the people who are likely to ark up the most are the ones who have the most to lose from you setting the boundary. So if you're not going to always be available, or if it means therefore that they're going to have to pick up some of the slack, or even just if they have to rearrange their thinking around this, that can be enough for them to push back against it and go not, you know, why and you know, why do you get the right to do this?
Kellie [00:23:54] And sadly, I guess in the next version of you, that might mean that it doesn't include the same sort of relationship or a relationship at all. Yes. With some others that. Yeah, that can't cope with that change.
Charlotte [00:24:08] That's right. And this is where, you know, creating that next version of you and creating boundaries, setting around what you're prepared to accept is not just about like your capacity and stamina levels. It can be about what you're prepared to accept in terms of other people supporting your choices and accepting your choices. Because the idea that you then don't set a boundary because it doesn't work for somebody else, that's not okay. Now, that doesn't mean I'm saying you want to burn relationships wholesale, but it might mean that you need to reflect on what the outcome of that boundary setting does mean for you.
Kellie [00:24:41] And possibly even though you're passionate about no being a complete sentence when it comes to big stuff that does affect those that, you know, you sort of had an unwritten agreement or understand you, absolutely, that there does need to be a discussion about, hey, this is what I am doing now.
Charlotte [00:25:03] Yes, it might even be that. And again, I'm being cautious in saying this, but it might even need to be that they need to be in a negotiation. It might be that, you know, this is the boundary I'd like to set. This is what would work for me. But I'm also conscious that it's going to have an impact on other people. And so how can we find a way to maybe not do it the way that I've always done it and get as close to the boundary that I want to set. But maybe we have to inch up on it. Maybe we have to install that boundary gradually. Maybe we don't just put one thumping fence post in straight away. Maybe we actually get everybody ready for it. We invite them to come along and help put in the fence post, if you like.
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Kellie [00:26:17] We've said that it's difficult, it's messy. Sometimes it's not always clear because you don't always really know what you want. Is it even more difficult to put in that post, say, six months after treatment? So you've bounced back, not because you're overcorrecting, because you want to. Yeah. And then it takes a little, like you've mentioned, time to actually work out what your limits are or what you actually need. So therefore, Charlotte's looking great and or looks normal and you started going back to work, full time and that's a double-edged sword because that's when people are likely to say, you're amazing, great to have you back and oh my gosh, the place did not work well without you.
Charlotte [00:27:08] Yeah, for sure. So two things on that is. Yes, ideally in probably most aspects of life, the old saying of as you mean to continue would be ideal you know sure optimally come out of treatment and go from the beginning, going to like reshape my life, going to set the boundaries, going to do the behaviour change, going to get my post-treatment adjustment under control and have my snow globe effect. Oh my God, what a busy week. And I'm going to tell everybody really, really efficiently and everybody's going to accept it.
Kellie [00:27:37] And then I’m going to sleep 10 hours a night.
Charlotte [00:27:41] And it’s going to be amazing. So, yes, it would be great if sooner is going to be better. But and definitely trying to unravel or roll back, you know, that return to just trying to be the version of myself that I was pre-cancer is going to be harder, and definitely, again, you know do as I say, not as I do. But what we often find is that people have a sneaking feeling that they might need to or want to, or both set some boundaries, but they find it really difficult to do it. And they find it difficult to do because it's unfamiliar, because it feels foreign, because they're worried about the consequences in relationships to other people. But there are some other reasons why they don't do it. And this is kind of like the sneaky part of of boundary setting. We find this out when people come back into therapy, they're like, So, you know, we've talked about boundary setting and I know I need to and I want to, but I'm just not doing it. And that's where we try to find out why they aren't. And it's almost always because on some level, not setting the boundary is working for them. Which sounds really weird because we've just spent all this time focusing on the fact that, you know, it's not working for you, so therefore you need to set the boundary, but on some kind of almost like lower level, like in your subconscious even it's working for you. And I'm a good example of that where, one of the reasons it took me so long to set my boundary that works. I had to change my work hours from five days a week to four days a week was because I was buying into the whole indispensability load of crap, essentially. I believed on some level that I couldn't not work full time because I was indispensable, that my clients, you know, simply would not cope without me, and that every time I booked people in on that fifth day or I accepted a new referral and, you know, I might let my caseload get bigger, I got some little purr. You know, it was like a year that felt nice. And it took me a while to confront that and I, I mean, I'm comfortable saying that now, but I tell you what, at the beginning, like a couple years ago, when I wouldn't change my work, I couldn't have said that out loud. And if I had, I would have felt shame. Whereas now I can say it and I can go, No, I'm okay with it now. I've been able to work through that. But there was ego in there.
Kellie [00:30:23] I can feel that reflection now in your voice that that was really big.
Charlotte [00:30:30] It was really big.
Kellie [00:30:31] And yet in the moment to remind people that Charlotte had had a double mastectomy chosen not to have reconstruction. So you didn't actually require any other treatment. You went onto hormone therapy. Yeah, but it's like you've said often before, regardless of what breast cancer you had have, whether you needed every biopsy or every tablet or chemical known to man, it's about your bucket and your experience.
Charlotte [00:31:02] Yeah, absolutely. And if your buckets full, your buckets full, and that post treatment adjustment doesn't seem to be better or worse, easier or more difficult for people, depending on how much treatment or the severity of their disease. It doesn't seem to relate to any of that. It's just really hard. And it was really hard for me and it took me a long time to set the boundaries that I needed to set and I am much better at boundary setting now, but I wouldn't say I get it right all the time. And it's like sunburn, blisters and hangovers. I seem to need to have many repetitions to be reminded that that's not great, not right. That wasn't a good decision. And boundary setting is a little bit the same where I can slip into and I'm particularly vulnerable around the work stuff. I'm actually better at it with my social stuff and my family stuff and that hasn't always gone easily. And I think that there are probably people in my loved ones network who still scratch their head a little bit and wonder why I'm not as available as I perhaps used to be. I don't know. It's weird, isn't it? I'm more comfortable with that. With the work stuff, I will slip into breaking some of the boundaries that I've set, and then I go, Yeah, okay. Reminder, we know why we put that boundary there. Got to go back and reset the fence post.
Kellie [00:32:20] Sometimes pushback isn't a blatant like what the hell? Or really? Yeah, it can be a little bit more subtle. What are some of the cues that you might miss where someone's pushing back?
Charlotte [00:32:34] Yeah, I think sometimes it's sort of a passive aggressive kind of response where people will let you, well, attempt to let you know their feelings by not saying and not doing. So, I won't have a conversation about this. I won't endorse it. I won't acknowledge it. I'll be kind of standoffish and almost punitive in my response. Now, most of us with passive aggressive behaviour can feel it, so we can feel tension in the room. We can feel the fact that someone doesn't send you a reply to a text message or sometimes you might get a monosyllabic response, you know. So it's like, oh, right, that sort of stuff. Rather than rather than like, really? Okay, that must be, you know, interesting and new for you, you know, sure, we'll do whatever we need to support you. And that can be really hard because the thing about passive aggressive behaviour is that the power is in the nothing. So if they're stonewalling, it's very hard to have a conversation with a stonewall like it really is. And that's the power.
Kellie [00:33:40] It's all part of interpretation, isn't it? Because it's that what are you talking about? I haven't said a thing.
Charlotte [00:33:45] Yeah, that's right. Exactly. You can't sort of like challenge it if there's been silence or there's been one word or there's been no response. And that is really hard because then it puts the onus back on the person trying to set the boundary to then start to slip into the justification and excuses for why they need to set the boundary rather than just saying, I need to do this because I need to do this, I need to do this because this is what works for me. It becomes I need to do this because I'm not the same person as I used to be because I've had cancer treatment and so on and so forth. That's not okay. That's not boundary setting. That's excusing and justifying and rationalising for not your own benefit, but for other people's benefit. And that's not okay.
Kellie [00:34:27] I feel like I want to clarify saying that we are talking in a cancer context. But when you want to reframe or set a boundary, whether it's because you physically can't, because of the fatigue of cumulative treatment or whatever, it could also just be fatigue of, hey, I don't know how I got to that point. And now it's not the cancer itself. No, it's the reset. So again, we're actually we're talking in a cancer context, but it's not actually the cancer. It's like, hey, I don’t want to do that anymore.
Charlotte [00:35:04] And that's that snow globe stuff and the reset and the wanting to do it differently. So there's the needing to do it differently where your stamina and capacity might be like if you like a new natural limit. So you might have had a natural limit before, for example, where you could basically be super mum, superwoman and you might find now that your wings have been clipped, you're not as strong. You know, you don't have the capacity. You need to have an earlier bedtime. You know, you literally can't work five days a week. It's not about that you don't want to. It's that you can't. It's like I've learned this is so naff, but I've learned that I need to be asleep by 9.30. I don't want to be asleep at 9.30. I would like to be up until 11 and have a life. But I need to be asleep at 9.30. Now I've learnt that, and that was setting a boundary too, setting a boundary with myself. It’s also setting a boundary with everything I do. If something is happening and it's gone on past 9.30.
Kellie [00:35:56] You're not going to midnight mass.
Charlotte [00:35:58] Not well, I'm not going to for all sorts of reasons. But I'm but also, I mean, like with Rob, I had to like, communicate that to him. You know, I can't do what I used to do. So there's the what I can't do. But then there is the what I also don't want to do anymore? And I want to change things.
Kellie [00:36:15] Come and have as much fun as you like but all before 9 p.m.
Charlotte [00:36:18] That's right.
Kellie [00:36:19] In reality, though, how does this work in family life? Like, who is going to do the stuff that you either don't feel you can anymore or you just don't want to? Because, yes, we know with breast cancer that it tends to happen more in your midlife, whereas we do have increasing numbers of young women, men and pre children post children. Some people have got no kids and want to have kids. Some people have actually got really little kids. How does it work in real life?
Charlotte [00:36:56] I think that again, it comes back to that bucket example of like whatever your bucket is full of, your bucket is full of and it's not a competition. But there are some, I guess, people who I refer to as sandwiches, and they're the people who've got both children and ageing parents. So they kind of the middle of the sandwich and they've typically been the ones that have kept the show on the road. And for them boundary setting I think is particularly tricky because it's not just the fact that there's a lot to do, but there's a lot to do for people they really care about. And young children and older people, ageing people are vulnerable and we do need to make sure that their needs are met. And so it isn't as simple as going well, I'm just going to step back or I'm not going to do it. It can be more complicated in that it might require some creativity, negotiation, research about well if I'm not going to, who is? So it's not just I'm stepping out, but also who's going to then step in? That doesn't mean that you shouldn't attempt to set the boundary or set the boundary in the best way that you can. That does still make sure, and I think I referenced this in an earlier episode, that risk and safety is your line. So if you set a boundary where it then jeopardises the risk and safety of your small children or your ageing parents, that's not going to be okay. But if you set a boundary that their risk and safety stuff is all fine and that maybe some of their less essential needs have to perhaps wait or be met by other people, that is okay. We did talk about reshaping your life in a way that maybe you're more flexible about how often or how you might meet a need. So instead of visiting mum and dad every day, it might be that you do it once or twice a week. And it might be also that you investigate who else can meet them or go on a visit with them. Instead, if we assume that we’re the only person who can meet that need, we assume that we're the only person who can attend to that task or activity. We might be doing an injustice to the people around us, both in terms of learning that they perhaps can and will do it, but also that maybe not everything has to be done in the time or to the level or as often as we've always done it. So we prevent ourselves and others from learning that they're perhaps a bit more resilient and flexible than we thought.
Kellie [00:39:27] So what are some other examples of boundary setting?
Charlotte [00:39:31] So I've mentioned things like work and loved ones and on the work front, I think I've mentioned previously that making changes in a work context. I don't want to say that it's easy, but it can be easier than in your family life because work has structure and framework and you can set more, I guess, clear boundaries using things like hours and times of day or, you know, how available you're going to be. You can measure it or you can set it to a schedule that's easier in a work context than it is perhaps in the rest of your life. So that's one thing to note. Another sort of thing around boundary setting can be about the use of technology and devices. So I think most of us are probably used to, you know, having a mobile phone as an extension of your arm, and that's not always a good thing. Learning about where your boundaries are and how blurry those boundaries might be in relation to technology. So not just phones, but iPads and computers and anything else that you can be contacted by other humans on. There are all sorts of ways to set boundaries. Sometimes it's about using the Do Not Disturb button. Sometimes it's about setting your phone on silent upside down on charge in another room away from your line of sight, so that you actually set a boundary in your own mind about how accessible and available you are to people. Another version of that is to think about how quickly you respond to people. If you get back to people in real time by email or text, the message in the message can be that I am always available to you. I've got literally nothing better to do than be sitting here waiting for your contact to come in and I'll respond. Now that's fine, except that you educate people about what to expect from you by your own behaviour. So if you keep doing that and then suddenly you don't respond to them, that's going to probably cause a ripple and a pushback. Whereas if you do communicate to them that I am not always going to be available if you don't hear from me, that doesn't mean that I won't get back to you. I will get back to you, might just not get back to you straight away. And then you might like to set a boundary where unless there is something really pressing, risk in safety or something absolutely essential and urgent, that you might set a boundary of maybe not responding for two or 4 hours. And that's really good because again, it gives you the opportunity to live life much more in your terms, not in that reactive, responsive way, reacting to other people's needs and demands.
Kellie [00:41:57] It's not surprising that some people will push back, subtly or otherwise, on your new thoughts. Do you have people that actually push back on themselves?
Charlotte [00:42:06] Yeah. I mean, in therapy, when we start identifying that maybe some boundary setting might be either desirable or necessary. One of the very common responses from clients, even if they don't quite use these exact words, but essentially it's Yeah, but, so it's like the boundary setting is a good idea Charlotte, but, and so they'll come up with all of the reasons why, you know, my family won't accept it, My boss won't go along with that. There's no way that I'll be able to keep that going. So it's a yeah, but, so there is actually that sense of not doing it or struggling to do it. So that's the resistance part of adjustment. And you know, we've talked about the three stages of adjustment being resistance, acknowledgement and acceptance. When you are boundary setting, you are in acknowledgement and acceptance. When you are pushing back and doing the yeah, but I can't. That's when you’re in resistance. The other thing on that topic is that when we identify the resistance, it's sometimes helpful to recognise that a lot of boundary setting is best done in small bites like so much, you know, we're talking about behaviour change. Small change over time is sustainable. Same with boundary setting. So in not talking about the need to upend your life or change things wholesale and for example, you know, changing your use of technology might sound like a really small thing, but the effect on your life, you know, how much burden you're carrying, how much stress, how much worry you're carrying can be quite significant. And in psychology generally, that's what we going for, small changes that produce a significant effect because that's where they're more likely to be done and they're more likely to be done ongoing. So I think with people feeling like, oh, I can't set a boundary because it's just too big, it's too big a thing, it's going to cause too big a ripple. Then actually breaking it down and thinking, okay, well, I'm going to try small steps, small boundary setting and then see what happens. You might be surprised to find that that's exactly the way to set boundaries.
Kellie [00:44:13] Okay. So no is a complete sentence. And if you don't set your own boundaries.
Charlotte [00:44:23] No one's going to set them for you.
Kellie [00:44:24] Or your health might end up setting them for you.
Charlotte [00:44:27] Well, and that's the thing, is that we find that again and we've talked about this previously, that in post treatment adjustment you can get proactive. And even if you're not proactive from the get go like we talked about in week one, but you can do more in advance. And the sooner that you do things, the less likely you are going to end up with an uncontrolled explosion, which is where the loose boundaries get the better of you, and that you are literally that octopus who's been pulled apart. And that's an uncontrolled explosion. You want to get out in front of it and set some boundaries while you can. And then it's those boundary setting opportunities are more like I once said, controlled explosion. That's making it seem way too bad, it is that you're in charge of, however, that boundary setting is received.
Kellie [00:45:14] And so it's not selfish, it's self-care.
Charlotte [00:45:16] It is definitely self-care.
Kellie [00:45:18] Thank you, Charlotte, and thank you for joining us on Upfront. We hope you've found some skills about the importance of boundary setting and if you found this episode helpful, why not share it with someone you know and leave us a rating and review and tell us what you enjoyed. In the next episode, we're going to talk about a delicate and somewhat very misunderstood topic. It's palliative care.
Charlotte [00:45:43] And if you're thinking about hitting the pause button right now, because that sounds a bit scary, I really encourage you not to. We're going to try to gently and respectfully unpack this subject for you.
Kellie [00:45:55] And there's so much more to it than…
Charlotte [00:45:57] …you might think.
Kellie [00:45:58] Absolutely. Thanks also to our podcast sponsor, Sussan. I'm Kelly Curtain. It's good to be upfront with you.
Voiceover [00:46:08] 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 helpline@bcna.org.au. Coming up in episode nine of Upfront About Breast Cancer, What You Don't Know Until You Do: Unlimited with Dr. Charlotte Tottman. Pain without fear: Pain, persistent side effects, and palliative care.
Charlotte [00:46:51] It's useful to be able to go okay. Was my physiological reaction actually about the pain or was it about fear? Because it might have been a relatively small pain that created a relatively big fear response. If you think that you've got a bunch of kilojoules or resources in your system that you need to spend, so that's your energy per day. If you're spending most of that energy per day on managing your pain, on coping with your high level of pain, it literally isn't available to do anything else. So it can't repair, rebuild, cope with anything else, which means that it is possible it will affect not just the quality but the length of your life because you don't have the resources to keep going. Pain wears you down and being more comfortable gives you more resources to allocate to other things.
Voiceover [00:47:45] 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.
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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 Sussan.
Want to get in touch? Visit our website at bcna.org.au, email us at helpline@bcna.org.au, or call our Helpline on 1800 500 258.
*This article does not provide medical advice and is intended for informational purposes only.
Please consult a medical professional or healthcare provider if you're seeking medical advice, diagnoses, or treatment.
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