A tale of two husbands: emotional isolation

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Kellie [00:00:36] Welcome to the podcast, I'm Kellie Curtain, and this is Upfront About Breast Cancer, What You Don't Know Until You Do with Dr Charlotte Tottman. In episode two, we hear about Charlotte's experience of emotional isolation during her cancer journey, including the feeling of being alone in the intense experience of a cancer diagnosis and treatment, despite being surrounded by loved ones. A reminder that this episode of Upfront About Breast Cancer is an unscripted conversation with Dr. Charlotte. The topics discussed are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical option. So please exercise self-care when listening, as the content may be triggering or upsetting for some. Charlotte, welcome. Hello. This is the tale of two husbands, which sounds you should have thought of quite whimsical and romantic, but not really, because we're talking about a cancer diagnosis and how you navigate that for yourself, but also helping navigate it with those closest to you in your life.

Charlotte [00:01:51] Yes, this is an episode that I reflected on and thought, ‘Isn't it interesting how you can feel emotionally isolated’, particularly, it can be particularly excruciating, because when you're surrounded by loved ones, you know your brain's sort of going, well, ‘I've got all of these people who care about me around me, so therefore I probably shouldn't feel isolated’. It would make sense to feel isolated if you're on a desert island, but you're not. And so your brain's going ‘well, I've got all of this, this support crew around me. I should probably be feeling well supported and yet I'm feeling so incredibly isolated’, and that absolutely applied to me too. And it was really well reflected in two instances one with my current husband, Robin, who I've been married to for 25 years and one in my ex-husband Peter, who I was married to for six years. And we had three children together. So I guess the learning from both of these experiences is it kind of doesn't matter whether you are talking about a relationship, say with your ex-husband who you might not necessarily expect to get a lot of, you know, emotional support from, perhaps or your current husband who you might expect to get a whole lot of emotional support from. And to be truthful, I do from Robin. But in each case, I was left feeling very emotionally isolated.

Kellie [00:03:06] Let's talk about your story. You've had a double mastectomy and eight weeks on, you're still in patient mode. Are you feeling emotionally isolated? What was your state of mind?

Charlotte [00:03:21] So after I had the surgery, I had a post-op bleed and then I had a seroma, which is a collection of fluid that happened sort of across both sides of my chest and that went on for eight weeks. And so for the first eight weeks after surgery, I was having to go back to my surgeon every two or three days to have it drained. And for women who've had seroma, they will totally understand how pleasant that is. Not because they stick you with a big fat needle and drain out the fluid. And it's a it's a way of feeling completely tethered to the treatment surgical kind of intervention. You don't really feel like you can start to heal and move on because every two or three days you're back having something stuck in you to drain you…

Kellie [00:04:06] And I assume you are in pain, too.

Charlotte [00:04:09] Yes, yes. I mean, I was covered in dressings and I had a as well as the post-op bleed. I'd had this weird because they trust me up with this incredible tape to try and put pressure on my whole chest to stop the internal bleeding. And I, my skin reacted to the to the tape. So when they took the tape off, they took off the skin as well. So my first few weeks after surgery were particularly physically challenging. So we found ourselves at the beginning of October. So, yeah, I had the surgery at the very beginning of August. So it was a very beginning of October, about eight weeks in and pay to my first husband, who is the biological father to our oldest three children. He lives overseas, has done for a really long time and we are good friends and to be transparent, he gave me permission to tell this story, which does speak to the extent of our friendship. He was back in Adelaide for a visit and as he always does when he's around he, he comes over and has meals and hangs out with us. So we're all good friends, anyway. On this particular day, I'm home in a house by myself. It was, you know, an afternoon and he called over to have a cup of tea and say, hi. And the other thing that had happened at this time was a really close girlfriend of mine, someone I'd been to school with and who had visited me six weeks prior and given me her homemade carrot soup, which at that point was still in the freezer and she'd got pancreatic cancer and died. And so she'd she'd been diagnosed and died within five weeks. And so Peter arrived coincidentally, at just the time that this had all happened, literally the her funeral was about two days after he was coming to visit me. So I was dealing with the my own surgery and the post-op sort of mess, and I was also grieving very, very raw lead, grieving the death of my friend from pancreatic cancer. So for those people who've had an ex-husband or have an ex-husband or even, you know, any kind of long standing ex, you probably understand what I'm about to say, which is that there are patterns, dynamics in relationships that get established over time. And so it became clear when Peter arrived, we fell back into the dynamic of our marriage. A long time ago. In my 20s, we fell off straight back into that and the pattern the dynamic of that relationship was I kind of was the emotional female, and he was kind of the guy telling me that I really shouldn't be that upset. Now that might have applied well when I was in my 20s, but in my mid 50s, it kind of wasn't really working. And he did say to me, Charlie, because that's what a lot of my family members call me. He said, Charlie, you can't get this upset every time somebody dies of cancer. Ouch. Yeah. Ouch. And whereas years before I think I might have either, I don't know, I got more emotional or fired up or whatever my brain just went. He so doesn't get it like he so doesn't get it, and I need to find a way if I'm going to keep relating to him successfully, I need to find a way to help him get it. Now all of this is happening in, you know, rapid time in my brain, and my training tells me that if you're trying to communicate with someone in a certain mode and it's not working, sometimes it's good to try a different mode. So we were sitting in the lounge room on two couches. He was on one and I was on the other, sort of at 90 degrees to one another. And I thought to myself, I've got to do something different, so I said to him. After he dropped that clanger, I said to him, ‘OK, so I'm going to do something now’. Just bear with me. And he looked at me and then I stood up and I lifted up my top. And I showed him my chest, which wasn't, you know, a great look. But it was a very clear visual reflection of everything that had happened in the last couple of months because of course, I'm otherwise sitting there in my I don't know what I was wearing, probably like a tracksuit or something, but I'm looking and sounding like me. And so he had no other real information other than me being upset. He had no other real information to go on. And so when I showed him my wound, if you like with the dressing and everything, I don't know if anyone's had this experience. You watch a cartoon and you see the cartoon character sort of shatter sort of crumble into a pile of rocks on the on the floor. Well, that's kind of what his face did when he saw my chest. And in that split second, everything changed. He got it. He got it. He totally got it. And I put my top down and I sat down. So he's still seated on the other couch. So I put my top down and I sit down and a few seconds passed and he didn't say anything. And then he stood up. Bear in mind, this is my ex-husband. You know who? He's not my husband. Now, we don't have that sort of relationship anymore. But as a friend, he walked towards me and he put his, and this is not the sort of behaviour that he would normally engage in, but he just put his hands out to my hands and sort of drew me to stand up. And then he just gave me a hug. Not a intimate type, a hug, but like a friend hug, which just said, ‘I get it.’ And after that, the whole conversation shifted and I didn't feel judged, I didn't feel isolated, I didn't feel alone. I felt like he understood why I was feeling the way I was.

Kellie [00:10:07] It's pretty powerful, was that a spontaneous thing you did?

Charlotte [00:10:11] Yeah, totally spontaneous, and I mean, I find it interesting that I had the wherewithal to do it because as I'm saying, as I'm retelling that like my heart rate's up and I'm thinking, God, how did I? You know, I managed to do that because honestly, if you asked me now to lift up my chest top and show you my chest, you know, I would think about it. Yes. But in the moment, it just felt like the only thing that might work. And it did. So this is not me suggesting radically to everybody listening that you lift up your top and you show other people your chest. That's absolutely not what I'm saying, but what I am really mindful of is that I was acutely aware of the feeling of being isolated and and feeling so alone, not not just in my own cancer treatment, but also in my reaction to my friend's death, which frankly, you know, that's not going to be the last person I know who dies from cancer, and it's got to be okay for me to be upset about that. And it's got to be okay for me to be triggered by that because all of that's normal.

Kellie [00:11:18] That sounds really powerful and fairly heavy, but clearly in that moment, he got it.

Charlotte [00:11:26] Yeah, he so got it. And yes, it was very intense. Even as I am thinking about it now, sort of a little bit takes my breath away. It's a really good reflection of the fact that people take in information through their eyes. So if human beings have got a choice between processing information based on what they're hearing or what they're saying, they'll always go with what they're saying. So in that moment, he saw and understood so much more. I could have talked to him for a month with my clothes on, and it wouldn't have made nearly so much difference. So this is also really relevant in terms of how we relate to others in our life. Going through cancer treatment is that if you aren't feeling like you're making headway when you're communicating, using your voice, then using a visual representation of some type not necessarily revealing your chest, but it could be that or your scar. But also writing things to other people. Writing things down using a different mode of communication can be a really helpful way of

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Kellie [00:13:04] OK, so what about Robin? Your husband? Was there a feeling of isolation there?

Charlotte [00:13:11] Yes, I this. This was also surprising. And Robin and I have talked about this a lot, and he similarly has given me his absolute permission to share this. We've been married for 25 years. We've got a great relationship, but and he's a clinical psychologist too. So in the first few days after diagnosis, we had a lot of late night conversations sitting in bed. And partly that was because that's where it's quiet and there's no distractions. And it's also, to be honest, where there wasn't anybody else. So we could be kind of completely frank and didn't have to protect the children. You know, I didn't have to not be distressed because I think that's one of the things we often do is we filter what we might talk about or how we might, how emotional we might get in front of the people that we love. So we were very candid in these late night conversations. Anyway, quite early in the space, day to maybe day three, he said to me, I just don't want our lives to be all about cancer, boom or something. Yeah, yeah, yeah. And he says he says now that as he said those words as they came out of his mouth, his brain went that it was not a good thing to say, and we absolutely both understand what he was meaning, which was he was having his own. Big anxiety response to the diagnosis, he didn't know what was coming, he was very scared about what was coming. He didn't know what it was going to mean for me. He didn't know what it's going to mean for, for the family, for life, for our future, for things like work. He know he knows what had happened to my parents on some level. He was pretty scared it was going to happen to me. So he was having his whole own anxiety response.

Kellie [00:14:58] But in that moment when he said, I don't want our life to be all about cancer. Yeah, hindsight is is great and you he can say now in that moment. What was your response?

Charlotte [00:15:13] My overwhelming response was feeling isolated. I think I think he even was a bit surprised that I wasn't cross. I think I was a bit as a bit surprised. But the thing that I really remember quiet, almost searingly is that night. I can remember lying in bed awake because I wasn't sleeping much, and I had this really clear thought. When I say it, I don't mean that I was doing a poor me. It was like a revelation that I had this really clear thought, which was ultimately, we are all alone. And Robin, I've talked about this since, and he put it beautifully when he said to me, Yeah, you're the only one in the MRI machine. And I thought, yeah, that's exactly it. It's like you can have as much love and support as anyone on the planet, but you're the only one that this actually is happening to. You're the only one who has got something growing inside them or needs to be cut out of them or traded with something like chemo, radiation or hormone or immunotherapy. You're the only one in the MRI machine and. It was a really again isolating experience just there. It was very intense. It felt very intense. I mean, I really did feel exactly like I was on a desert island, even though I'm a wonderful husband who he really is wonderful. He was like lying less than a foot away from me.

Kellie [00:16:48] It sounds like a universal experience and that feeling of isolation, even in the best relationships that yeah. How about a how, how good it is at some point you're likely to feel alone.

Charlotte [00:17:03] Yeah. And it is best summed up by those words like, you know, they just don't get it. And to be fair, how could they get it? And unfortunately it is. It does seem to be one of those experiences where unless you've actually really been through it or something similar, it's a very hard thing to get like Rob. Rob, I think, gets it as much as another person can get it without having cancer. Long may that be the case, but that's the beat that he doesn't have. He doesn't know what it's like to be in that position. So, yes, it is very much, I think and certainly from my clinical work is what I see is that I don't think I've ever and I don't say those words lightly. I don't think I've ever had a client who at some point hasn't said those words. They just don't get it.

Kellie [00:17:50] What triggers that response had all the pieces of the jigsaw come together in the psychological explanation of why that is? It is. Is it as simple as well? Unless you've been there, you can't get it.

Speaker 3 [00:18:04] Yeah. I mean, I think I think ultimately that's a really important point for those going through the cancer experience to recognise, which is that if we expect other people to get it and those other people haven't been through a cancer experience, then ultimately we are on some level setting ourselves up for disappointment because we are expecting something of those others that they simply do not have the capacity. So even if they can get it to a point, there's always going to be a missing part, a limitation if you like. So part of it is incumbent on the person who's going through the cancer experience to kind of understand what what's a reasonable expectation of my loved ones? And are there other people out there? Are there other people that I can connect with that I can get that particular emotional need met? And so that's about understanding how important empathy is. And actually, and that's what empathy is. Empathy is the ability to understand another person's experience. And so if we're feeling emotionally isolated and we've got loved ones around us, it's about going OK, maybe, maybe instead of trying to get something out of those loved ones that they just simply are unable to provide because they don't have the same lived experience. Maybe it's about recognising that they can be so valuable in lots of ways, but that empathy might need to be extracted or enjoyed in other relationships.

Kellie [00:19:31] So you really have to seek your people out, so to speak, don't you? I know that BCNA, we have the online network, which is a peer-to-peer support group, and so often we hear they just get it because someone has either gone through something similar is going through something similar, and it's that pool of knowledge of people who know what you're going through.

Charlotte [00:19:55] That's right. And what it what it brings with it is absolutely that feeling of like people who get it, but it also it is reflected in a real ease in relating to people. So there's almost like a shorthand. You don't have to educate people, you don't have to explain. It's almost like a wink and a nod. You can start a sentence and you can see or feel from those people who empathise with your position that they know exactly what you're talking about. Whereas with people who haven't been through the experience, you're often feeling like you almost have to have to persuade them or educate them, and that can feel really invalidating and isolating in itself.

Kellie [00:20:34] It can sound exhausting, too. If you were the one with breast cancer and correct, yet you're trying to educate others as to what you're going through, and yet you're the one that needs support. You could you possibly get a bit angry? Start keeping a bit of, you know, scorekeeping for those that don't get it?

Charlotte [00:20:51] Yeah, you can get angry. And most of all, and this is what I see a lot of people withdraw. So and certainly that's the challenge is to stay connected to the people that matter to you. But I have seen so often there's like a little cycle that can happen, which is where when you feel vulnerable and you feel like you need emotional support, your brain goes looking for it. Even if you don't realise that's what's going on, your brain goes looking for that emotional support. And if it doesn't find the emotional support or if it feels disappointed in that lack of emotional support. Instead of keeping going, it tends to then go, ‘Oh, I'm hurt, I'm disappointed’, and then I'm not going to share with you anymore because I'm not going, and it's that it's that feeling of like avoiding the thing that makes me feel uncomfortable. So I'm going to stay away from that hurt and that disappointment, which means I'm not going to keep sharing anymore. And so then what happens is the person who really needs the support is busy going, No, I'm not going to share anymore because I don't want to get hurt and disappointed anymore. And where does that leave them even more isolated and alone than they already were? So it becomes this kind of like reinforcing cycle, and that's really sometimes hard to break. And that's again, where having that kind of empathy finding your tribe going where you feel understood is so important. Because if you keep going back to the well and it's dry after a while, you don't go back to the well.

Kellie [00:22:27] Where does that leave, though? The people who may not understand, probably the people who love you and who are part of your every day? Where does that leave them, though, as far as being able to support you? I mean, if they haven't been through a cancer diagnosis or something similar, it's not exactly their fault. And they what if they desperately want to get it at? What can what can they do? I mean, sometimes what they say, perhaps Rob, when he said, I don't want our life to be all about cancer or someone saying, you'll be right, you'll be back in no time. That's probably not what they mean. They just they self-protecting themselves. Are they just trying to look on the bright side? Is that counterproductive?

Charlotte [00:23:13] It's really common for loved ones to wade into what I call positive pressure territory, which is that real look on the bright side, cup half full, you know, it'll be fine. I just know you're going to be okay, which is it's coming from a place of love and support, but can feel really invalidating. It can make the person who's going through the cancer experience feel very, very isolated and alone. The ability to listen and to validate and to not assume, to not to not assume that you know what the other person needs to actually ask. Like, you know, what do you need? What? How can I help? Tell me how you feeling? Don't try and fix it. Don't dismiss it. Don't minimise it. Don't batted away with a positive statement. Try and be really just present and sit with the person in their distress. That's really easy to say, and it's not easy to do. We get as human beings; we get caught up on. The interpersonal interactions are the thing that happens in front of you, so if somebody says something that's often what the what we respond to, sometimes as the person who's going through the cancer experience, it can be really helpful to look behind the interaction and look to what the intent was and guy and there's a big difference between intent and delivery. So as humans, we get stuck on the delivery so often that the intent is good, but the delivery is clumsy and we go, ‘Oh my God’, they said, That's so wrong. They got it so wrong. I feel so isolated and alone. But if we look behind the delivery and go, ‘OK, what was going on there? What do I think they were trying to do?’ Like what Rob was trying to do. He was trying to share with me his anxiety about what had happened and what was going to happen to us. But the language that he used didn't communicate that well. Now, once I was able to understand that, I was able to let go of some of my feelings of isolation and go, ‘Actually, you know what? He's in this with me. His experience is not my experience, but we are in this together. And so it is about looking beyond the delivery to the intent.

Kellie [00:25:25] So his delivery of I don't want our life to be all about cancer. His intent was, I'm really scared and not sure

Charlotte [00:25:32] how he's going to do to our lives. Yeah, absolutely.

Kellie [00:25:35] Yeah, it's a very noble rear view mirror on your behalf. I would imagine that most people would go whack. That's just got me straight in the heart. And how could you say that you're my person? And yet, all of a sudden, now I have to comfort you for saying something really stupid. And yet I'm the one that's hurt.

Charlotte [00:25:55] Absolutely. And that definitely, you know that that sort of feeling of anger and feeling like, you know, how could you have got this so wrong? And of course, anger then sets up a bigger divide. So again, easy to say. Sure, don't get angry, but a really normal natural response. Some of this goes to the quality of the relationship as it stood pre diagnosis. So if you've got the sort of relationship where you're used to working through conversations and unpacking things and, you know, to clinical psychologist, I guess you'd like to think that maybe we have some skills in that area, although not all the time, not at 3:00 a.m. in the morning. But of course, not everybody does. And not everybody has the sort of supportive relationship you know, people can be holding on to, you know, expectations and passed poor behaviour or wounds. And that can absolutely bleed into how they relate to one another in the process of dealing with cancer diagnosis and treatment.

Kellie [00:26:56] Okay, so we've talked about finding your tribe go where you are understood and for people caring for someone with breast cancer or any sort of life threatening illness, you know, to have empathy. What are some of the things you could do if you've got something embedded in your memory about something that someone said or what you feel let down? Is it helpful to go back and process some of the things that others have said that have possibly made you feel isolated, angry, disappointed?

Charlotte [00:27:36] I think the answer to that is sometimes so it's not a one size fits all. There are going to be times where it's going to be more useful to, if you like, draw a mental line in the sand and recognise the limitations of the situation and of the person involved and understand that may be going back and reopening. What do the person going through cancer can feel like a really current wound, but to the other person involved might not even register in their memory bank. So, the risk is you go back and sort of go, you know, I now remember that conversation that we had six months ago and you said this and I said this, and this is how you made me feel and the other person might be looking at you like, what are you even talking about? I have no memory of that whatsoever because of course, we lied and memory traces based on what's salient salience, just sexy language for what's important. So if you're the person going through the cancer experience, pretty much everything that people say to you around the cancer experience is going to be important. You’re going to remember it. But if you're on the other side of the fence and you're just trying to be supportive and relate to your friend or your family member, there's a pretty good chance you won't remember those conversations or you certainly won't remember them the same way. So the risk is that you go back and you try and unpack this conversation and you end up just creating more of a mess because your memory and their memory of it are either not the same or not, even in existence. So I would be really cautious around sort of a unilateral, yes, go back and unpack it. I think if there are really important loved ones where the behaviour the delivery has left. A scar, if you like. And if that scars getting in the way of kind of moving on together or moving on successfully through the cancer experience, then I think talking about it, maybe not referencing a specific interaction or a specific event in too much detail because again, there's this whole group of study called eyewitness testimony, which is basically if you get 10 people to see the same car accident, you'll get 10 different versions of the same car accident. So yet two people and talk about a conversation, you're almost never going to get the same recollection of that conversation. So I'm always a bit cautious about saying, Yeah, sure, go back and unpack that. But if you go back to your loved one and say, Do you know what? I've been thinking about something I've been reflecting on something and I feel, and you actually nominate the feeling and feelings are quite easy to identify because they're all one word. So I feel disappointed. I feel isolated. I feel alone. And you actually nominate how you feel. That can often be quite important, including in your loved one to understand the effect of their behaviour. So even if you don't unpack the he said, she said, or, you know, we were there when this happened, even if you don't bother with that, if they understand that their behaviour has had an impact where you feel a certain thing, then that can give them a way in to then go, Okay, well, how do we how do we resolve this? What will help? How do we move forward with this?

Kellie [00:30:49] If you are feeling emotionally isolated? And you don't have the courage for want of a better word to express those feelings of like, I'm alone here, I feel I'm going through this by myself. Is there anything else that you can do to maybe ease that?

Charlotte [00:31:10] I think that reaching out to other people in similar situations is a really good idea, and that's where things like BCNA can be so important. I think that talking to trusted others and that might be someone like me, like a therapist where you can actually go to a safe space and be vulnerable with someone who, if you like, has got no skin in the game. So you're not having to worry about the impact of your own emotional response on that other person. And the other thing that can be helpful is to write this stuff down and to actually express it. Because when we talk about it, whether we talk about it with a loved one or a therapist or someone in a peer-to-peer support network, when we talk about it, in order to actually talk and use our user voice, we have to have figured out the thoughts and it's the same process. When you write things down, you're just using your hand to write instead of your voice to speak. But you have to have articulated the thoughts first and say writing things down can be a really therapeutic way of being able to express some of the emotional responses that are going on.

Kellie [00:32:18] So it's a way of getting it out. It's a download, exactly.

Charlotte [00:32:21] It's a download. It's and you can you can do it on a computer. You can do it on a scrap of paper. You can do it in your phone. Generally speaking, I like to recommend that people actually do it with a pen and paper because there is a qualitatively different experience of that process of writing. But nevertheless, even if you and I've done quite a bit of this myself, I write a lot on a computer and it's incredibly therapeutic. And if you never read it again, that's that doesn't matter. It's not about that. It's about actually getting it out of your head and expressed in some form.

Kellie [00:32:55] So when it comes out of your head onto the piece of paper, what actually is that, apart from a download like to something actually extend in the mind?

Charlotte [00:33:07] It's an acknowledgement. It turns it into something that's just kind of like a nebulous floating bit of thought, and it turns it into an actual, captured, tangible piece of information. An event, a feeling, a thought. And so it can make us feel like we're legitimising our experience.

Kellie [00:33:26] So it's definitely better out than in.

Charlotte [00:33:28] Definitely better out than in, like cancer.

Kellie [00:33:32] Dr. Charlotte. Another insightful episode. And if this episode has helped you or may help someone you know, you can support the show in the following ways to allow us to continue to be upfront with you and reach more people through meaningful content. So subscribe to ensure you never miss an episode. Download so you always have an episode ready to listen to leave a rating and review and tell us what you liked and complete. The survey that you'll find in the show notes a reminder that business. My Journey has a range of resources related to breast cancer, so sign up and visit My Journey. BCNA’s online network is also an online peer to peer support community where you can connect with others going through a similar experience. To join, Visit thr BCNA, a website. In our next episode, we're going to talk about the showing up and the letting down.

Episode preview [00:34:25] I think it's interesting to just note that the flocking doesn't last. It's often a fairly temporary phenomenon and it happens after diagnosis, and there's a whole bunch of reasons why people flock to the action. If you like some of it's about social expectation, there is certainly within, you know, social networks. There is often a real pressure if you like, you know, have you sent something? Have you seen them? Have you talked to her? You know, that sort of thing to kind of legitimise or validate your position in that person's life? Some of it's this does sound a bit weird. Some of it's social competition. You know who did more? I took one casserole all. I took to rallies. I sent flowers. Yeah, I went to the hospital.

Kellie [00:35:10] Our theme music for this series is by the late Tara Simmons, who lost her life to breast cancer. We're very grateful to her family for allowing us to use her music. I'm Kellie Curtain. Thanks for being upfront with us.

Ends [00:35:25] Thanks for listening to Upfront About Breast Cancer, What You Don't Know Until You Do with Dr Charlotte Tottman brought to you by the Breast Cancer Network Australia and proudly supported by JT Reid.