Full Transcript
[00:00:07] Dr Monika Wieliczko: Welcome to Guide to Afterlife, your go to podcast for young widows. I'm your host, doctor Monica Velitko, a psychologist and your fellow widow. Each episode brings you insights from world renowned grief experts and authors discussing complex grief issues and their personal experiences of loss. My aim is to challenge the way you think, empower you to face your feelings, and help you develop resilient ways to grief. Move beyond surviving each day and visit guide to afterlife.com to take part in the Grief MOT, your first aid program for grief.
[00:00:50] Dr Monika Wieliczko: Hello, and welcome back to season 2. It's great to be back after a very restorative period of Christmas break, which I think I really needed, and a period of few weeks during which I was preparing for the new season, cherry picking some amazing guests for you, psychologists, researchers, and authors, who bring both their professional knowledge and expertise and lived experiences of loss. In this season, we will be focusing more on some recent findings. A lot of them come from a European grief conference, which I attended in November last year in Dublin, as well as some grief books that I think might change the way you think about your loss. So some of my recommendations. And we will be talking about anticipatory grief, that's where we start today, as well as things like how to manage work while we grieve, our emotion regulation skills, both ours and our children's, and resilience. So how to build resilience in some examples of people who've displayed real signs of resilience during their grief. And then we will also talk about complicated relationships with people we've lost, with our loved ones, with our partners. Some real life experiences, you know, maybe don't show this kind of sugar coated experiences of grief, but actually a real complexity of what happens when we lose someone. We dearly laugh, but also what that relationship looked like.
[00:02:34] Dr Monika Wieliczko: So I hope you really enjoy those conversations. Clare will be obviously when would come, but this is just an introduction. So let's begin. I hope you enjoy the show. In today's episode, we're talking about anticipatory grief And I've got 2 amazing guests with me today, Claire Dawson and Tatum Roeck. They're both coming to talk to me today as representative from SHINE, which is a cancer charity that supports people who've been diagnosed with cancer as well as their families. So welcome, Clare and Tatum. Hi. Oh, it's lovely to be here. Hi.
[00:03:19] Dr Monika Wieliczko: Hi. I know Tatum from 2021, it was. We've met through SHINE, didn't we, Tatum? We met through the program you were running at the time for partners of people who've been diagnosed with cancer. And I've had some really fond memories of the support and care I received, and I thought it would be just so helpful to talk about that personally for me, but also to get a sense of what that anticipation of loss looks like. So so that was the one of the reasons why I initially contacted you, Clare. And you so kindly offered to speak to Tatum and get her on board to record this episode, which is just absolutely brilliant. So thank you so much, Claire, for doing that. So maybe I'll let you introduce yourself a bit more. If you could just maybe say a few things about your role and what got you interested in working for this amazing organization.
[00:04:20] Dr Monika Wieliczko: So maybe if we can start with you, Claire.
[00:04:22] Clare Dawson: Sure. Yeah. Hi. It's really nice to be here, and thank you for asking us. It's a really important topic that I think, yeah, needs to be talked about more.
[00:04:31] Clare Dawson: I work for Shine as the program delivery manager. So at Shine, we run all sorts of programs and events, the bulk of which are 6 week online programs that you took part in several years ago. So my job is to manage all those and make sure they run and facilitate some of them as well. We can talk about them a bit later, all the details, but there's various programs for people in different positions. I actually came in touch with Shine, I think it was about 2015 because I've had a cancer diagnosis myself when I was a lot younger. So I had an osteosarcoma. When I was 17, 18, I had my treatment. So it was a long time before I came in touch with the charity, but, my treatment has left me with a lot of long term health problems. And so I kind of found really struggled to find other people who understood that whilst I was obviously so grateful to be in remission and Clare really lucky to be in that place, actually, that doesn't mean that my kind of experience of the fallout of cancer was short lived. It it goes on for a long time as it does a lot of people. So I found other people in Shine who understood that and came to a few events and was like, it was revelatory, you know, that I hadn't really talked about it much before. So I started volunteering with them, and as the years have gone by, just basically taking any opportunity I could to be involved with the charity. And so that now means I work with them, which is I feel very privileged to do.
[00:05:52] Dr Monika Wieliczko: Indeed. And I think they're really lucky to have you, Claire.
[00:05:55] Clare Dawson: It's very generous of you.
[00:05:57] Dr Monika Wieliczko: Payton, do you wanna say a
[00:05:58] Tatum De Roeck: few things? Yes. So I think I just picked Claire to the post, maybe finding the shine maybe 6 months earlier. I had been living in LA when I was diagnosed with breast cancer when I was De. And I came back to England because my mum was diagnosed. So I went from patient immediately into Clare. And then my mum passed away. But I have a sister with learning disabilities. So then I needed to be here, be her person, be her advocate. The thing was I hadn't lived in this country for 15 years. So I didn't have, like, networks, you know. I didn't have, you know, work friends. I didn't, you know, I had, like, old school friends and, you know, a friend from uni and, you know, stuff like that. But just those friends that had made it through 15 years of me living elsewhere. And so when I was going through all of that, like, I had a really high level of need and so I was looking everywhere for support. And I was feeling incredibly lonely, incredibly isolated. So I found shine. And yeah, I have worn so many different hats since being involved. So I'm a yoga teacher, and massage therapist. And because I have a fried nervous system, I ended up becoming a bit of a relaxation expert, mostly to try and calm myself down. But in doing so, it's been actually really lovely to share some of those things and help, you know, with other people's toolkits, you know, just little little extras, you know, on days that are really tough. And then I started doing the programs. And I'm so glad, Monica, to hear what you got out of your programme. Like, it's incredible to hear. And, you know, like Claire said, I think of it as such a privileged position. And we watch people coming in with layered, complicated, you know, kind of emotional spaces. And a lot of people that haven't been able to talk before. And so actually watching those connections be made is something that really is an incredibly rewarding part of our job.
[00:08:26] Dr Monika Wieliczko: Yes. Indeed. And we will get into that because this I've got so much to say about what I got from from the program. But, yes, you've you've been doing a lot. And now when you said about your experience in massage, obviously, I knew about you being kind of practicing yoga and being a yoga teacher.
[00:08:45] Dr Monika Wieliczko: But but that really, yeah, that really kind of stayed with me, your expertise and passion for working with body, and that relaxation. So that's definitely in my mind. But you also do podcast, don't you? I do. So I do the Shine podcast, which is called Not Your Grandma's Cancer Show. Mhmm.
[00:09:05] Tatum De Roeck: Because so many people, when they hear about someone's cancer, go, oh, my grandma had that. And you're like, it's totally different when you're like 40, you know, years younger than someone's grandma. So it's that thing of, yeah, it's just a bit different when it's in this age range. There's no good time, but, you know, when you are dating, when you, you know, are in a relationship, and you're married, you know, and your life is just in that space of kind of your career trajectory or you're kind of in the swing of life. It's very, very different than when you're in your seventies or eighties.
[00:09:51] Clare Dawson: Yeah. Absolutely.
[00:09:52] Dr Monika Wieliczko: And I'm so glad you you said it. Yeah. Sorry, Claire. Carry on.
[00:09:56] Clare Dawson: No. I was I was just gonna jump in because I don't know that we've actually said that Shine supports people with cancer in their 20, thirties, and forties. And so that's, like, what makes us a little bit different that, you know, we support the partners of people in their twenties, thirties, and forties, so that age is a bit more fluid. Mhmm. But like Satham says, it's there is no better time to get cancer, but I think your priorities at that age are really quite different. And we know that people within our age category struggle more with feelings of isolation, with mental health, like the fallout of going through cancer as a younger person. Generally, the mental health fallout is bigger, statistics and research shows. So that's why we really focus on that age group to try and plug that gap in support.
[00:10:40] Dr Monika Wieliczko: Yes. Because it's completely out of ordinary, isn't it? Like, having cancer diagnosis in your thirties or forties. I mean, what's the likelihood you're gonna bump into someone in the same position as you are on the street or amongst your friends? Like, it's very, very isolating. But also, I think the the the culture doesn't really make room for those kind of situations. There's just no awareness, but also a language to talk about death and dying and terminal illness or any form of severe illness like cancer. Because, you know, having cancer diagnosis, whether it's terminal or not, like, it can at any point, it can change. So I think there's always this experience of facing unimaginable, something that's completely unexpected. And I think that's what this whole anticipation of death and and what this conversation, this circling round is about, that moment when you're actually realizing that something has completely changed in your life, that suddenly you're facing this conversation with usually with, an oncologist or a doctor who's checking your results and saying, well, we think you've got cancer.
[00:12:05] Dr Monika Wieliczko: De think your partner has cancer. And that really changes everything. And and I'm sure you can relate to both had cancer diagnosis in the past and thankfully recovered from it. But that kind of feeling of uncertainty and and the fear, I mean, I I still remember that so vividly in my bones almost. Like, it's this kind of very visceral experience of of not knowing what is going to happen and not wanting to know almost. Not wanting to know the truth or what is the kind of the likelihood that you you're gonna be okay. I think
[00:12:43] Tatum De Roeck: what you said about the culture and the language and how at odds that can be with that moment that you've received this life changing forever altering. And and almost like when you said that about your bones like this lives inside you. And the language that we often hear is quite dismissive. You know, when someone wants to express actually we've just heard the worst news. And people don't know what to say. And they often steamroll over that with, oh, well you can't they don't know, or you could get hit by a bus, or we get we're all dying, or you know, or we maybe you just have to be that 1%. Or, you know, maybe if you just think more positively. And for so many people, there's incredibly, like you said, life altering conversation. When you need to reflect on that, there often isn't the language from people outside or the space given. Is that something that that you found?
[00:14:02] Dr Monika Wieliczko: Yes. Yes. I think that is very spot on, the experience of being completely on your own. Because even your family and friends are not really in a position to understand what you're going through because they haven't had the experience. But, I mean, I I was quite lucky in some ways because a lot of my friends perhaps had the capacity to think about at least to some extent to think about that experience and to sit with me and one friend in particular who had the previous experience of supporting other friends who were going through cancer and her kind of almost, like, very down to earth, very practical, very real approach to this is terrible, and we know what can happen. We know that this could be terminal before it actually we received the terminal diagnosis really helped me to just kind of understand the gravity of the situation because it's so easy, I think, to be distracted or to kind of not want to think about it because I think we all play a role in that. It's not just the culture. I think it's also in us that unbelievably difficult and overwhelming feeling that you just don't want to think about. The shock, I think the first response is always shock, isn't it? Which is Yeah.
[00:15:22] Dr Monika Wieliczko: You know, often felt in the body.
[00:15:24] Clare Dawson: Absolutely. And you can, like, you can see that some of this is just self preservation, isn't it? It's just in order to be able to put one foot in front of the other, I can't possibly do that while also acknowledging this huge existential shift that's just happened to my world and do the 2. And, actually, when you first get a diagnosis, often there's a lot to do. There's a lot of appointments and a lot of stuff to show up for and things to organize and think about and work and practicalities. So almost it does feel like a, yeah, a biological preservation mode kicks in that doesn't really let you touch that bigger stuff for a while. And I think if you're meeting that with, there are some wonderful people who obviously can have these conversations, and I think those are that's where real connection can be formed in those moments of crisis Clare you can have real authentic conversations, but a lot of people struggle with it. So if you're going through this, like, slightly shutdown feeling at the beginning whilst the outside world is also meeting you with trying to put a red bow on it and give it back to you as something better than it is, like, is it any wonder that you can feel quite isolated and disconnected, I think, in that time?
[00:16:37] Dr Monika Wieliczko: Yes. Yes. Indeed. And I think that's what makes it much, much worse. The fact that we can't process, we can't because if you can't talk about it, we won't be able to process it. We won't be able to feel it, and we won't be able to deal with it. So it just gets pushed out of our minds for the time being. And it has some tremendous consequences psychologically, That kind of experience of just not dealing with it and letting it slide for now.
[00:17:06] Tatum De Roeck: I one of the things that we show, and we're very aware at at Schein that there are no answers. You know, when De definitely are not, you know, come to this Roeck, we've got the answers. Like, that's it's about a space to sometimes it's literally just about space to be yourself, to have all those complicated feelings that whatever you Clare feeling, you know, whether it be things that you don't even understand yet, you know, like some people, you know, maybe their relationship with their partner hasn't been the best. You know, Roeck can be feelings of guilt. There can be feelings of anger.
[00:17:49] Tatum De Roeck: There can be feelings of actually my partner isn't now the way that they were before. I'm already grieving that they're still here. But I'm also pre grieving that end, but there has already been an end. Like you know, these layers and layers. And actually just having space to come with all of it, I think is is what the program is offering. But we do look at, one of a few models of grief, which I think at least can kind of make it it's a a circle, but it, you know, denial or shock or numbness or dissociation is one part of it. And I think actually, like what Claire was saying, when you have to get through a day, you can't feel all of it. That actually the wave it I know it's a circle, but I think sometimes anticipatory grief is more like a pendulum. And you're going in and out of kind of a for some people, sometimes, a dissociation Clare and and so when you aren't feeling anything, sometimes you can feel really guilty about that. Like, why aren't I processing everything? But actually, I think that's part of it is that it's not gonna let you yet.
[00:19:16] Dr Monika Wieliczko: Yes. And I think what you just said about that experience of coming in, going into grief, and then coming out of it, facing the reality, and just retracting from it and having a distraction, I think it's the only way how we can deal with it. Because otherwise, you get completely overwhelmed with it and you can't function. But also if you don't see if you don't get in touch with it and you just live in denial, then when the reality eventually creeps in, it's much harder to, I think, to to deal with it because it's been a long time. And and obviously everyone deals with it in a different way. So it's not to say that, that is there's right or wrong, but but I think in our culture, it's very hard to deal with it. Because when you think about the like the medical world, the medical profession, I don't remember anyone mentioning anything about death or dying or what that could mean. What would be the consequences. I remember having to actively ask our oncologist about what would the ending look like or what would the what are we going to, What what should we expect from it? And the same with staff on wards.
[00:20:36] Dr Monika Wieliczko: Like, there was no recognition that obviously, it's not their role necessarily to talk to us about this, but the pressure is to preserve life and to put pressure on the system to fight, and that's necessary part of dealing with cancer. But I think what is often missing is is the realization that, you know, at some point, you have to actually think about what what are the costs of running running the show, if you like, of fighting fighting for this life until the very end. And I think I I I hear a lot of those stories of people being so consumed by fights that they don't they miss the point at which, you know, there's not much left, and they're they're completely shocked by the experience that, you know, that's actually coming up. And I and I can relate to it myself. I mean, although I perhaps I wasn't that much in denial throughout the journey that the the death can be the outcome, which eventually it was in Clare of my late husband. But there was definitely that kind of pressure to fight, to kind of just try my best to put as much effort into keeping his body alive that we kind of forgot to focus on on other things sometimes. And then and then it's maybe like a in a you know, looking back retrospectively, it feels a bit like something's been missing. And, like, we didn't do any memory boxes, or we didn't do certain things that maybe would have helped with the process, partially because I don't think he was in a position to to do that, and I couldn't really enforce it on him. And partially because he was very unwell, and the medication the pain medication was making him feel really drowsy. So there are other other factors, but I I suppose what I'm trying to say is that when I look back at those years, I kind of wish we lived in a culture that had a bit more of an understanding and acceptance of what's coming, and be supported with this. And that that's not that's not where we are. So having a place like Shine, where you can actually come in and talk to people and actually be surrounded by people who get it is an incredibly important place to have, I think, for anyone going through death cancer.
[00:23:22] Tatum De Roeck: And although like people coming in and with all kinds of feelings, there's also incredible laughter and camaraderie that can happen. And, you know, that actually, if someone has had a good week, you'd like all things are welcome and also kind of really dark, humorous, but, like, really funny things that have happened as well. And, like, having a place to bring those stories when everyone else would be gripping the table white knuckling. Like, oh, god. How do we respond to this?
[00:23:58] Tatum De Roeck: You know? Like, what? The catheter went where? Like, you know? But actually having a space to bring that, I think it's that integration in some way. But we also appreciate how hard it is to give yourself that space because I think as someone, as a partner, like I think you know I can already hear it a little bit in what you were saying about I wish we had done this, but I couldn't enforce that. And, you know, like, you're holding everything around your person at the same time as having all your feelings. But from talking to a lot of people, partners aren't always considered. They're not always checked in on. And, actually, it can feel incredibly tough to even have 2 hours to go, okay.
[00:24:48] Tatum De Roeck: This is my time. Yes. Claire, did you wanna
[00:24:51] Clare Dawson: Yeah. I mean, I just I was jumping on the back of what you were saying about the way we approach it and and the fact there is such a diversity of experience in the group as well that finding that time, but also meeting people where they're at. We have groups of people who meet together, and you might have someone whose partner's just been diagnosed and someone who's been living with their partner with cancer for 5, 10 years. And so we get people at really different stages. So I think what's quite nice about the group is that there isn't an expectation that you right. This is where we're gonna talk about death and dying. That's not how we do it because Mhmm. Everyone has to come at that in their own time, don't they? And I think Yes. What tends to naturally happen is you give people the space, and they can just it for some people, it might be just listening to someone else talking about it, and that's enough for now because they've seen it modeled, or they might just be able to it might be the first time they've even set up now that their partner is gonna die. And that's huge, like, that first time you've said those words, but that's all they can do for now. And, like, so everyone, you know, by no way, by no means are we prescriptive in this, like, this is how we talk about death and dying in these groups because it's so personal, but it does give people the space to do what they need to do at that time because I think that's that's the important thing that no one feels forced to talk about it in a moment when they're not ready. But, also, like Tatum says, like, it's tempered with with the funny stories and the the kind of I mean, there is a lot of insanity navigating the NHS and its system, you know, and the bureaucracy and the kind of things that nobody else would would understand, and and those are nice to share as well, I think.
[00:26:34] Dr Monika Wieliczko: Yeah. Absolutely. And I was just reflecting on what you were just saying, Claire, about making room for all those feelings. And and I remember, like, kind of my first kind of impressions of the program were, are we actually Monika talk about our hobbies and what we're gonna what we like to do or what we used to like to do. It's like, my first reaction was like, that's a bit not selfish, I suppose, but well, that's not that hasn't been on my mind. I haven't even thought about that because, yes, when you're in crisis, when something so significant happens, like, you don't think about who you are and what you wanna do or what you do still like or what makes helps you relax or, you know, all these things. And I really appreciated that take on putting us in the center and our needs in the center. Mhmm. And actually saying, well, this is really hard and acknowledging was enough, I think, for people to be able to well, to complain, to say just how shit it is, how hard they found it. And and just kind of yeah. Making that space, I think, sometimes it's enough to trigger the whole cascade of feelings and, and reactions and just kind of having the permission, I think, to be to carve out that time as you said 2 hours. I was thinking, gosh, 2 hours of my time. How do I justify it? Because it feels like that. It really is when you're a Clare to someone.
[00:28:12] Clare Dawson: Yeah. I was I was gonna say it's interesting that a lot of people because I talk to everyone who before the program start now, so kind of just to check that it's what that they know what to expect, but, you know, that it's the right thing for them at the right time. And the number of people who are sort of saying, I want to do this because I want to know how to better support my partner. I want to understand what they're going through. I want to and you're like, this is very much focused on them, and that's because I think that's how the structure of the health care system and society really sets that up, that you are the carer whether you like that word or not.
[00:28:44] Clare Dawson: You care about someone who's going through something really tough, and so the focus is on them. And so people will almost always ask you how they are, how how's he or she doing, how what's treatment, what's going on. And so we think it's really important to vary from the very beginning, be like, this is your pro this is about your process and what you're going through. Not that what your partner is going through isn't just as important, but there is somewhere for them to go to. And I think it's just really important that we focus on the plus ones as we call them, and their experience and and carve out time for that for sure.
[00:29:19] Tatum De Roeck: It's it's really interesting. So quite a few people will come to our circles program for people that have cancer. And then on the next plus ones, several of their partners will come. And and even, like, you know, and obviously, we want everyone to want to be there. But it is quite funny sometimes when people are like, I'm here because my wife told me to. And, there was one guy and in the beginning, there was just a little bit of, yeah, I'm sort of being made to do this. And that's fine, right? Like, you know, like that it makes space and Clare was just this little bit of resistance. And and actually De love that because again, what we know is that it's not about the piece of writing that we might share. Someone might love it, they might hate it, but the fact that you're thinking about, well how do I think of uncertainty? How do I process this? Is Clare, you know, the kind of epiphanies come from. And this particular person was a little bit more prickly. That was Roeck, you know. And at the end of the Roeck, the most massive, like, I just got so much out of this.
[00:30:43] Tatum De Roeck: This was incredible. He was like, this is the program I never knew I needed. You know? And for someone that was, like, initially kind of, you need to go to this, it was, you know, and again, we're not saying there's there's no shoulds when it comes to anything that Shine does. But it was it was lovely that he felt like he could share that. He had the space to go, I'm not usually I'm, you know, I'm not one of these Clare people. I'm not one of these talk about my feelings people. But actually, by the end, he he'd made friends and, like, it was it was lovely, and he absolutely, like, had sparkly when he was talking about other people that he met and what he got out of it.
[00:31:35] Dr Monika Wieliczko: Yes. And I think that that really is so important to acknowledge that we might have different reasons for not wanting to attend to our needs or our feelings because, you know, it's really hard to face up to our own internal battles and, you know, as you mentioned before, Tatum, about feeling angry or feeling really dissatisfied. There is not much understanding or almost like room for people to have those angry feelings towards people who are terminally ill or dying? I mean, how are you supposed to feel angry with your husband who's, you know, going to die in a few months' time? Where is space for that? Like how is this meant to come out if there is no other person or or or grief that can hold that space? It's very hard for an average person to to be aware that they have that anger to start with, and then secondly, to actually say it out loud. I mean, it's complete especially I think in English culture, anger. Yeah.
[00:32:45] Clare Dawson: Just a
[00:32:45] Dr Monika Wieliczko: few And
[00:32:45] Clare Dawson: I I think with a lot
[00:32:46] Dr Monika Wieliczko: existent yeah. Sorry. Can't.
[00:32:50] Clare Dawson: I think a lot of those feelings in terms of I mean, we talk a lot about the groups being some way where you can talk unfiltered. And so it's just that sense of Mhmm. Whoever you're talking to in your life, and then we naturally do it. And in some ways, that's that's how we connect, isn't it? And you might have something connection's slightly different if you never considered anyone else when you were talking and how they'd respond. It's a really normal thing to do. But it does mean that that ability to say, actually, you know what? They're doing my head in. My partner's doing my head in, and they're really ill. And those two things shouldn't go hand in hand. We've had an argument. And and I think also ability to speak unfiltered. You know? We know that everyone's coming to this group for the same Dawson, that they just want to share the experience. And so there is this kind of almost like everyone's been given this permission, this implicit permission to just be open and not have to filter what they're saying. Yeah. It's it's a it's a really important space. I think there's something there as well about when you were talking about that, like feeling anger with your person, whoever they might be, the pressure that gets put on people when they're living with an incurable diagnosis for every day to be make every moment count, make every that sense of time being this commodity that's so precious and you mustn't waste it Dawson give space for any negative experience in that process, does it? Like, how to take time to kind of be actively grieving in anticipation because you feel then guilty for wasting the time you have with that Dawson, grieving them before they've even gone. And then, like so that idea of that, I think that's what makes anticipatory grief so complex. It's just so many different layers going on at once.
[00:34:28] Tatum De Roeck: Yeah. And you're spinning through them all, you know, sometimes, Clare, it will get absolutely whirlwind. But I think sometimes identifying that even the anger can be part of the grief is actually quite freeing because you think, oh my god. If I'm this angry, does that mean I don't love them? And the thing is that we we know that in those last months, you know, things can, you know, without kind of support for people or a place to reflect on those feelings, people do break up. On one podcast episode, there was, a man who basically he was he was fuming. He was so grief. And it wasn't until he'd left his wife and he was in a motel like in a seaside town that he was like, oh my god. This is basically anticipatory grief. You know?
[00:35:26] Tatum De Roeck: That he wasn't gone yet, but actually it all exploded. And, you know, I think people sometimes walk around with this incredible feelings of shame. Like, what is it that I can't handle my relationship at this this time that was supposed to be this Hollywood image of connection, you know, every moment is being seized and instead screaming at each other or we're not listening. We're giving each other the silent treatment or maybe they've always hated me. The complexity of an a relationship at any time that then you add in these big emotions of grief. And I think identifying, oh, god. That's really normal. Mhmm. I'm not on my own with this. If I thought, you know what? I'm not coming back. You know? I'm just gonna leave. Like, that's actually that's a really normal thing to feel, and that might be part of grief, anticipating it.
[00:36:24] Dr Monika Wieliczko: Yes. What's what's coming, but also what's been lost as you said already. And I remember that so well, this feeling of my whole life being completely destroyed because of his illness and the plans to have children, the plans to live normal life, to be able to go out without feeling guilty that I'm leaving him behind in the house. I mean, I wasn't really able to to leave him for more than a few hours without someone else being there anyway because of how unwell he got in the last, let's say, 10 months of his life. I remember we had a fight over getting a puppy. I really wanted to have a puppy. And for him, it meant another loss. Because we would get the puppy and then he would have to lose the puppy again. And and that kind of experience, I was like, at at least give me the bloody puppy. If I can't have a child, at least I can get the puppy. And and there was so much anger. I remember. But then eventually, he he let go of it. And we we did get a puppy and it was the best decision ever because the puppy just kept him so happy and was the only thing that put a smile on his face and and obviously gave me so much life, I think, and amidst the death and everything that was going on. So so, yes, I think what you're describing is just this tremendous conflict between life and death and, you know, what's happening to you feels like death. I mean, I was convinced I was going to die with him. That my life's gonna completely end. He's so identified with the person that it's really hard.
[00:38:10] Tatum De Roeck: But but like you were saying so many things. Like, it it is the end of the life you thought you were going to have. You know? The things that you had planned to De, the children you had planned to have. You know? There's a trajectory that we see going forward. And that loss, like, yes. Nothing was guaranteed, but we thought it was available. And they're not around. Like, so it's like all the things, like, you were saying about, you know, which is part of your identity of what you expected to experience during this life. And there is no sort of, I'm trying to think, like, sort of bounds on that grief. Like, it's not like you can compartment it. You know? Like, this these are huge monumental so when you said, like, this feels like a bit of me dying, like, that absolutely makes sense.
[00:39:08] Clare Dawson: I think this is and this is particularly acute when you're diagnosed or your partner's diagnosed in your 20 thirties because it's a stage in your life where we do live by kind of milestones and what what are we working towards next. And it's always the next thing, isn't it? Whether it's the next job or the next move or the next whether you plan to have children or whether you're gonna get married. Like, those kind of life milestones really demark that time. And so I think we do get into a habit of constantly living in the future or or at least this part of our brain that's constantly on the future. And so if you've constantly got a part of your brain on what's gonna come and what you envisage your future being like, to have that and often very suddenly taken away, like that moment when you get that diagnosis of stage 4 or incurable cancer, just in that moment, that whole bit of your brain has to completely shift and, you know, it it no wonder it feels like a part of you dying too because in some ways it is, isn't it? It's part of that, like Tatum said, that future you thought you were gonna have. So you're processing now even before you've lost your the person you love.
[00:40:20] Dr Monika Wieliczko: Yes. It's it is huge. And so few people speak about that. I remember having this realization when he died. Everyone was in such shock that he died. So he died suddenly. And I was like, what are you talking about? Like, it's been going on for a year and a half. Like, in my mind, he is. He died a long time ago in some ways. Yes. I mean, some bits of him did and relationship, yes, dies before the person dies and in or it changes its form to the point that you become a carer rather than a wife or a husband. I definitely felt like I was on my own. I didn't feel like I was in a relationship. And I think these Clare the things that are very difficult to explain to someone even though you're married to someone, but you don't really feel like you're in a relationship. And I'm not saying that everyone feels like that. But I think towards the end, there's not much left, I feel. And maybe that's just my experience. But I definitely felt like there was just such a mismatch between the reality of the lived experience of that and how it was perceived on the outside and the shock of people who were like, oh, for them, it just happened. To me, it happened a long time ago.
[00:41:39] Tatum De Roeck: I I think kind of going back to that, you know, almost for some people, to think that someone's gonna die almost feels like a betrayal. So they they hang on to hope that someone's gonna be Roeck, and then it is such a shock. And the further away they are from that person, the more that they can do that and then it's a shock and then they'll, you know but I think that's often why those people outside that, you know, haven't seen, it is sort of shocking because they couldn't get their head around it. And I think for some people in a relationship I've heard have said, I didn't wanna let myself think about it because they're still here. And, like, for some Dawson, that that seemed wrong to even contemplate it.
[00:42:25] Tatum De Roeck: So I think then it is a shock Mhmm. When it happens. And, you know, there's these layers of acknowledgment of what's going to happen. Like, some people can get their head around, like, okay. It is gonna happen.
[00:42:37] Tatum De Roeck: But they thought it was gonna be a slow decline, kind of like what you were talking about. Like, you watched him go, and some people, they know that that person is sick, but then it all happens really quickly right at the end, and they're still blindsided. And I think that kind of those mismatches also add to that level of isolation.
[00:43:02] Dr Monika Wieliczko: Yeah. It's just huge, isn't it?
[00:43:03] Clare Dawson: Yeah. I'd I'd agree. I think I've heard people talking about both examples, and I think it's it's difficult because you can't force it's it's like you're saying when you're in a couple, in some ways, it would be well, not easier, but at least you'd be having the conversations about what this process might look like and what might happen and what what happens when you die. And and it might be quick towards the end, and it might be slow and having kind of preparing yourself for all those eventualities. But, obviously, you I I'd imagine, and I've not been in this position myself, but as a partner, you feel sort of you're led by the person with the illness and how they want to talk about it. You can't force that conversation when they're not ready to have it. But equally, you know, I've had it's a very different scenario and it's completely different scenario, but I had a good friend from Shine who died, and and we we were quite close through the whole process. And he was just this amazing kind of almost I don't know how to like, he modeled that behave like, he wanted to know what was gonna happen, and he'd be like, I need to know, like, practically what's gonna happen on the day when I go into the hospice, and then what will I feel? What will I what will be happening in my body? Like, what will I know about it? What what are the options for me? Like and it was so open and conversational on him and his family, and and I was there for bits of it. And it was such a kind of it was still awful and horrendous and really sad to lose that person, but there was something less shocking about it. And it felt more like we'd all been on a a process together rather than having to each process our grief separately because no one could really talk about it until it De happens. So I think, you know, you talked about the sort of the power of having these conversations, and it's got to come at the right Tatum. And you can see you can't force it, but when you can find a way to have them, the difference it can make to that process, I think, is quite profound.
[00:45:04] Dr Monika Wieliczko: Yes. And I think that's what I think I took so much from from the program that I was attending with with you Tatum was this experience of having the permission to think and talk about these things, but also knowing that someone is holding you in mind and that my existence, my experiences are valid. And I think making that room for anything that comes up. And I think that has to happen sometimes outside of the relationship with the person who's dying because if it doesn't, if you're completely isolated and you don't have that outlet, I think as you said, Claire, the person might not be ready. In my case, my husband definitely wasn't ready.
[00:45:48] Dr Monika Wieliczko: Not to say kind of put it in a negative light, but I don't think he had the capacity to think about what is going to happen to me when he dies and to think about how to make it easier for me. Unless you've got those conversations happening elsewhere, I think, yes, it is going to be a very much more difficult experience of grieving the person who actually died and afterwards, you know, what you what you do with your grief after death. And and which is why I kind of I thought it's so essential what you're doing as a charity, supporting people with cancer. And I remember, Tatum, I remember you did this exercise with us. Clare are 2 two things. 1 was with the breathing exercise. When you breathe in, let's say, for 5, and you breathe out for 6, and, you know, the other one where you lift your legs up, and lean it against the wall and kind of induces the state of relaxation. And I remember those two things, especially the breathing exercise, was so essential. It was so simple. But I remember laying down in bed while my husband was in hospital or at different times really, and feeling really disturbed, distressed by what was happening and not being able to fall asleep. And this is probably this was probably the only thing that helped me to get to sleep. So it was this kind of really precious thing that stayed with me, and I always, recommend it to all my patients. And and it's not necessary that I didn't know that this exercise existed. I mean, obviously, but it wasn't that I think it was, I think it was the way it was presented, the way you framed it, but also the timing of it when I really, really needed to be reminded that I've got my breath available to me and in a very kind of simple way. Because sometimes we can get overwhelmed with the amount of things you should be doing, you know, hundreds of things you should do to get into a relaxation state. Not gonna work. But that kind of selection, those you know, you would think of them as very simple little tips, but they were absolutely crucial in just helping me switch off, regulate. The other thing that I really found helpful, it it's the physical massage. So the touch, you know, presumably just oxytocin having to because when you're with someone who's dying, you don't really have much physical contact. I'm sorry, but it's not that never was my experience when he was ill, but also who gives you a hug? You know? Who gives you that comfort? So physical massage was, like, that kind of physical touch soothing experience. So so yeah, there's little tiny things that made such a difference. Yoga as well. I mean practicing yoga, running was so essential. And again that reminder that you've got your body and your body can relax if you know how to direct your movements. It was absolutely crucial. And I thought it would be really important to to bring it back because sometimes we don't know how much we're helping people until we get that feedback back after a while and how much difference it can make in those really tricky, incredibly challenging moments.
[00:49:16] Tatum De Roeck: I'm so so glad to hear that. And as someone that like, I have a well-being cupboard in my house.
[00:49:26] Clare Dawson: I have fullsters.
[00:49:27] Tatum De Roeck: I have blankets. I have massage balls. I have, like, you know, chimes and gongs and, like, all these things. And I know that sometimes I need to be reminded by somebody else to give myself permission to do the things that I need. And often, it's when I'm in a position where I'm looking after someone else, Where I know that that is when I need to be reminded of it the most because everything inside me is like, I can't think of myself right now. And I do wonder I have going off my theory. I wonder if we're sort of 2 things. Our stress response is often reacting to what's going on externally in the world. That's how we were designed. So that like looking outwards. Right? Being on high alert, you know, and especially if you might need to call an ambulance in the middle of the night. If somebody you hear a noise from the other room, if something's happened, there is this external high alert that you were on. And actually, when we both have the permission, the gentle reminder because like you said, it's not it's not that you don't know. It's that sometimes it's just at the time and hearing it and where it comes in. But it's that tending to yourself. Like, that that instead of the focus going out, the focus goes in. And that can be touch, that can be breath, that can be, you know, these different ways. But that sending a signal to your body that right now in that moment, you are safe is such a change. And I saw a video just recently. I'm not gonna get a chance to do it myself. Where someone was talking normally and they had electrodes put on their heart. So everything was being sort of monitored. And then they just went into doing a few breaths. And it wasn't just the peaks and valleys, but it was the actual rate of the heartbeat completely changing within 20 seconds.
[00:51:43] Clare Dawson: Wow.
[00:51:43] Tatum De Roeck: And you could see the difference between talking about the tube and then taking a breath, breathing in, breathing out, and what was happening to the heart. And, you know, again, like, with all these things, sometimes I'll see that visual and I'm re reminded of it again. So I am so happy to hear that that came at the right time for you to put your feet up, you know, literally, you know, up a wall, over the side of the bed. Because it is those moments that we do tend to ourselves when we really need it. And it is the hardest to do because our whole stress response is saying, not right now, keep going, not right now, keep going.
[00:52:29] Dr Monika Wieliczko: Yeah. So It's not safe.
[00:52:31] Tatum De Roeck: Yeah. It's understanding the humanness of us. That that isn't an easy thing, but actually when we can do that, what it can bring. And I'm so glad. Because those lonely, lonely, dark nights, they go on forever. So having something to do in those moments.
[00:52:51] Clare Dawson: Yeah. It's it's so wonderful to hear the different things that people take away as well because, like, Tatum says, we don't wanna be prescriptive. So if something works, take that. And if it doesn't, leave it. And sometimes those are good conversations too about why things don't help. And I know for me, having been part of Shine Events myself as a participant, I really need the permission almost someone to take charge of that calming stuff because I'm just not good at it naturally by myself. I'm someone who will, like, frantically meditate to try and get calm. You know, when you hit that peak stress and you're like, right. I'm gonna try some breathing. That's like just click. Cut to your breathing. And it's like I just it's really difficult to get into that mindset thing. So to have it kind of, like, have that practice space with a group who you know are going through something similar and you're connecting on that level too, You've been given permission. It's someone who's like, your time is important. I'll give my time, and we can do this together. Like, all of that, if you can sort of tap back into that when you are on your own at a later point, I find that really helpful. You can try and kinda try and get back to that space where instead of, like, yeah, frantically meditating, I'm like, oh, just imagine Tatum's voice. What would she what would Tatum say in this moment?
[00:54:09] Dr Monika Wieliczko: But I
[00:54:09] Clare Dawson: think it is. It speaks to that and the fact that people often don't feel guilty about taking the time for themselves and see that as a selfish thing or a can't possibly do that for me right now. It comes right back around to that, doesn't it?
[00:54:21] Dr Monika Wieliczko: Yes. Yes. Absolutely. And and
[00:54:24] Tatum De Roeck: I think one of the things, you know, as someone is in that anticipatory grief period is often not taking time for yourself can lead to running yourself down physically, mentally, emotionally, to the point that, you know, quite often health is impacted. It is something to, you know, those basics of every time you eat something Clare you've done one tiny thing for yourself kind of like, you know, acknowledging that, you know, this it's not looking at all the things you haven't done, but the things you are doing. Like, yes, you know, you are allowed to do that. You are allowed to take a little bit more time and make sure that you get a good lunch. Or if you haven't been able to do that because you've been at the hospital all day, it's alright to focus on those things that are Monika sustain you. Because I think a lot of the time, people can't even hear what they need anymore.
[00:55:25] Dr Monika Wieliczko: Yes. I think I think you spot on. You just can't say what you need because often people ask, let me know if you need anything. I first need to know what it is I need to be able to ask for help. And that was one of the hardest things for me. Plus, I am a person who's always been, I I suppose my personality was around maintaining my independence. So when something so traumatic happens and you're completely wiped out, like you're completely overwhelmed with the demands of the situation you're in, then you do need that help. And asking for it is much harder when you really struggle to think and process information because of the effects of the traumatic experience on your brain functioning. I mean, it's it's absolutely the most difficult thing to to actually acknowledge. Yeah. I would like someone to to move in with me and do take all of that pressure off my hands, which can't happen, at least not to the extent that it's needed. So so there's just so much there. And and I feel like we could probably go on for another 3 hours just kind of listing the things that that go wrong and that we need and, you know, are essential. I suppose I also wanted to make some room to think about those programs you're running and to find out a little bit more about how people can access them and also those who would like to support the charity and how to do that because, you know, what's the likelihood of someone one of us having cancer in life in a lifetime? I think it's, like, ridiculous.
[00:57:04] Clare Dawson: It's between 131 Dawson 12 at the moment. It's and it's rising. And I think, actually, the rates of people under 50 getting cancer has increased. I think it's 80% worldwide since the seventies. It's an enormous increase, and we don't really know why. So, yeah, the support out Clare, you know, the medical services can't provide it all. So charities are really stepping up and and providing support that's critical, and it's needed more and more. So yeah. Yeah. We could absolutely De with all the support that's out there. But in terms of the programs, I can talk a little bit about I you know, this is my day to day job is is making sure these programs run. And
[00:57:45] Dr Monika Wieliczko: Absolutely.
[00:57:45] Clare Dawson: And like you said at the beginning, I mean, we've run Yeah. In terms of for plus ones, we run a 6 week online program. And if anyone is interested in it, I'm sure you put the details of our website in the notes. Just search for events on our website, and then whenever the next program is coming up, it'll be up there and you can apply. There's no referral in. It's just a self referral. You can just apply. They're all free. We do take a sort of deposit just to secure the place because we're often oversubscribed, but they're free programs. We know that money can be impacted as well, can't it? Finances and income by by a diagnosis. So we never want that to be a barrier to anyone joining either. But, essentially, I mean, you know, if you've related at all to the conversation we've had today, these are the sorts of conversations we have in that program. We focus less on the sort of cancer itself with it and more about the holistic experience, the the impact on your life, the way you feel, the way you think about yourself, about the world. Each session has a theme or topic.
[00:58:45] Clare Dawson: And in the different programs, so we have 1 for plus ones or partners of people, and we have a circles program that is for people with an incurable diagnosis. We also run 2 other programs. One for anyone with a cancer diagnosis in our age range Dawson for people in their twenties who've had a cancer diagnosis. So we have those 4 programs running at any one time, and they do vary a little bit. And, obviously, we look at things from a slightly different angle. We might use different, resources that we that we read or look at. But broadly, the conversations, each session has a Monika, something along the lines of living with uncertainty and what that does to someone, what living with that level of stress does to people and how you manage the the anxiety that comes from it. Yeah. We have sessions on relationships. So all that that we were talking about, about how your role changes and how that in itself is a loss and something you grieve, that kind of how the relationships were before. But also in the bigger sense, how you relate to the outside world when you might feel like you're going through this in a sort of little bubble of isolation, how other people will say things to you that is less helpful. Or, I mean, some people are wonderful, but some people struggle to know the right thing to say and can kinda be a bit clunky, can't they, in in their, reassurances. So it's how you field all that stuff. We talk about your priorities or your identifying what you need and how to ask for help. That's actually something we've introduced, I think, probably since you did the program, Monika. A new session on identifying what it is as a plus one that you really need and how you feel about asking for support with it because, like you said, lots of people are. De have this, someone wonderful did one of our programs before, and she's recorded a De for us because she she was a paramedic before her husband was diagnosed. And so she's like, but I'm the one people come to for help. You know? Like, how do I shift that around? And then for her, asking for help felt like a failure. You know, she's like, if I ask my mom, I'm failing as a daughter. If I can't support my husband, I'm failing as a wife. Like, she had this real sense of asking for help. It was tricky. So we we talk about those kind of things. We look at self compassion. We look at telling your story. All these kind of big topics. So, yeah, anyone can come along, send an application. I know that it can feel a bit daunting joining a new group of people to talk about such big kind of personal stuff that you're going through, and we really appreciate that. A lot of us know what that feels like. So we we talk to everyone before they come on any of our programs just to make sure that, you know, you can have an ask any questions that you have and get the reassurance you want to join. That's what they're all about.
[01:01:26] Dr Monika Wieliczko: Yes. But but I must say that the way you run those programs, it doesn't really put you on a spot. I didn't I didn't get a feeling that you have to shell. You have to say something. So it's very much you can take as much as you want from it, but you also can contribute as much as you want. And I think that's the beauty of it that you anyone can really go there whether they're ready to talk about it or not. Absolutely. They just Dawson. And I think that's really important.
[01:01:51] Clare Dawson: Yeah. Absolutely. It's very much come as you are. We're never gonna force you to talk about things that you don't think will help you at this minute or that you're not ready to talk about. Let me say, you you do see I mean, De Tatum and I were talking earlier about you you see some real changes in people that just come naturally as part of being in that group, but it's never forced.
[01:02:10] Dr Monika Wieliczko: No. It's really special, I must say, that's yeah. It's always gonna have that kind of I was gonna gonna be grateful for that space. And and I also wanted to to ask you a bit more about how we can support the charity. What kind of what do you do? Because I know you've got quite a few things on your website that, you know, some kind of events that people can organize or what is the best way to support the charity and whether there's anything you can Clare.
[01:02:36] Clare Dawson: Yeah. Absolutely. I mean, we're we're a relatively small charity. You know, we are we are growing, and our reach is really increasing, but we don't have a lot of money for promoting ourselves. So so if you can come to the website, obviously, we have a fundraising manager. If if there is anyone, we we don't get any money from the government. So everything we do is is raised directly from community or corporate sponsorship and grants. So, we don't expect everyone to go and run a marathon. That's not the thing. But, you know, if you know anyone, if you're if you work for a big organization that's looking to support a charity for a year or is looking for corporate partnerships, anything like that, It's almost just having shine in your mind as you go about the world going, oh, I wonder if if anyone's looking for, you know someone loves running marathons, but they're looking for a charity sport. That's great too. So in terms of a financial support, that's obviously always something we'd be really grateful for. But I think it's also as much about spreading the word. Like, one of our you know, part of our mission is that nobody in our age range should have to go through cancer on their own without getting the support that we can offer, that kind of support. So, you know, if you know someone if you know someone going through something, and it can be really hard to know what to say or to suggest ways to help, actually, just giving them our details is a is a great way of of just showing that you're thinking about them Dawson and you've you know? And it and it's just a suggestion that, you know, people can ring us up and talk to us and work out the rest of the stuff we do. So just giving them our details would be great. It's also you know, if you come into contact with people who work with young adults with cancer so we do a lot of work with health care professionals. So, actually, most of when we talk about referrals, we just mean people who've been told about us because it's not a formal process. Yeah. A lot of people coming to us will come via a health care professional, who's just heard about us, who we've talked to. So if you happen to be talking to working with people who work with young adults with cancer, spreading the word that way has really helped us as well.
[01:04:36] Tatum De Roeck: And one of the things that people often will do is listen to the podcast, the Not Your Grandma's Cancer Show podcast as a way of going, what are these people about? Like, will I like going along to something? So, like, quite often at events or at programs, people will be like, so I listened because I was like, what am I coming into? And for some people, again, like, they they might actually prefer to have those conversations while they're going on a walk and, like, maybe listening to a podcast about an episode that, you know, relates to them. De do put, like, very clearly what the episode is about. So sometimes if you know someone, and you know that maybe that that they're a podcast listener, you know, that can that can be just quite a little resource to send that someone can pick up or put down whenever.
[01:05:36] Clare Dawson: Good thing about the podcast, and we also have a lot of personal experiences on our website that people can read that read like a short interview, really, with someone. We've got lots and lots of them in from people with all sorts of different experiences. The real value of those, I think, is when you can't find the words yourself or what you're going through or you've been thinking about the impact on relationships. But how do you bring that up with the people you're in relationships so they can feel awkward or clunky? And actually having a resource, you can go, oh, is this latest podcast? Have a listen because it kind of it's like having a third party in the room, isn't it? That you kind of a neutral third party where which allows some of those conversations to happen and might just break open some of that stuff that feels too difficult to say upfront. So if kind of introducing things in that way as well can can really help people find their way to us and and not be too worried to get in touch.
[01:06:29] Dr Monika Wieliczko: Yeah. I would just wanted to say it's so important to make that room for thinking and reflecting and kind of joining those dots. And, I think this conversation just really helped me to kind of look back or where I was a few years ago. And I think having that continuity of this experience and and De connecting with you and kind of knowing that you're there and that people can perhaps, you know, be in touch with you and kind of and be part of the community. Like, you both kind of remain in touch with Schein, and that creates this enormous sense of in a kind of social support, social network that is just thriving. And and I'm I'm really amazed by how well organized and effective and helpful your work is. And, you know, it's just great to see because it's all coming from lived experience. And I think I I personally think that's the best way. So having you here on the podcast, I just wanted to say how important that's been for me. And I'm I'm sure that it helped many people to listen to your wisdom and just your honesty and transparency and this warmth that comes from, yeah, having having lived through all those difficult times and wanting to support people at, I think De can say, the most difficult times of their lives. So so thank you so much, on my behalf, but also all the people that, you've helped. And and I really hope that we can all support you a little bit with your incredible mission and make the whole cancer conversation a bit more available and and mainstream than it is now. So thank you both so much for today.
[01:08:13] Tatum De Roeck: Just wanted to say thank you. Like, this has been absolutely lovely, and it's been great catching up with you again and also work that you're doing and this podcast that you're doing because, you know, you're you're changing things in terms of, you know, the conversations that are not often had. And, you know, so people tuning in and listening to you talking so openly and sharing your experiences is huge. So thank you.
[01:08:45] Clare Dawson: Absolutely. Yeah. I can I can only echo that? The ability to talk about those moments that we see people come to, honestly, quite rarely. You know, it's not it's not the whole program everyone talking, like, in this in-depth way to get these moments. I know this podcast and this resource will be so useful for those people to help find a way of getting there themselves. And you're you're absolutely right. Once we we sometimes say that De it has been said that Shine is like the mafia. So once you're part of us, you can never leave. It doesn't we're always there in the background. We just want people to feel they can always get in touch and you're part of the community even if just knowing you're there is a comfort, then we've done our job as well. So, yeah, thank you so much for having us. It's an absolute pleasure.
[01:09:29] Dr Monika Wieliczko: Thank you for joining us. I hope you found it useful. Connect with me on Facebook and Instagram under guide to afterlife for more brief tips and under guide to afterlife for more brief tips and resources. Visit guide to afterlife.com to send me your questions and to take part in the Grief M. O. T, your free first aid program for grief. See you next Tuesday for yet another stimulating conversation.
