Episode 20: Talking about end of life
Let’s be Upfront about end of life. A topic almost too sad to talk about, but too important not to, palliative care and exploring end of life options are a reality for the 3000 Australians who die of breast cancer each year. While breast cancer survival rates have never been better, little is understood about palliative care and what end of life looks like.
Upfront is joined by Jules Domigan, who was diagnosed with metastatic breast cancer at the age of 34. Jules, an advocate for talking openly and frankly about end of life, bravely opens up about balancing her fight for life, living life, finding the joy and leaving a legacy of love.
We recommend listeners exercise self-care when listening to this podcast, as some may find the content upsetting.
Due to current circumstances, this podcast was recorded remotely. Listeners may notice a slight difference in audio quality when compared with previous episodes.
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Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Dry July.
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Kellie Curtain [00:00:05] Let's be upfront about end of life. It's a tough topic for many to think about, let alone talk about. While survival rates of breast cancer are better than they ever have been, the sad reality is that three thousand people, mostly women, will die of breast cancer each year. And it's really important to not only give those people a voice, but also support them to explore palliative care and consider end-of-life options. Joining me is Jules Domigan, who was diagnosed with triple negative breast cancer two and a half years ago. Jules is 35 and married and has an almost two year old daughter. And yes, she was diagnosed when she was pregnant. Jules is now in palliative care and wants to talk openly and frankly. A warning to our listeners that some of the conversations might be confronting or triggering. This is almost too sad to tell, but it's too important not to. What do you think, Jules?
Jules Domigan [00:01:04] It is sad sometimes, but I think for the best part, it's actually been a positive experience. I've been able to talk to people about the things that make them happy and the things that make them sad. And that's it's been a really eye opening experience, to be honest.
Kellie Curtain [00:01:23] So tell us your current situation, where are you at?
Jules Domigan [00:01:27] So currently I have stopped all chemo. That essentially means that the doctors believe that there is no current treatment programs that will improve my my situation. So there's no chemo that can make the cancer go away or reduece at all.
Kellie Curtain [00:01:54] A lot of the time people live for many years with metastatic breast cancer. But that's not going to be the case for you, is it? You're not going to get the happy ending.
Jules Domigan [00:02:04] No. No, I won't. I won't be. I won't. It's not one of those cases where you see in the movies where if I fight hard enough, if I, you know, put enough effort in, then it'll all come out in the end. And I'll be a hero. It's not not one of those situations, unfortunately. I'd love it to be, and I put every bit of effort in to be here for my daughter and my husband. But it's just that that kind of situation.
Kellie Curtain [00:02:35] Okay. So you're in palliative care at the moment. What does that actually mean? Palliative care is often used to give respite. But it's the pointy end right now, isn't it? It's end of life.
Jules Domigan [00:02:52] I'm really glad you asked. Because the first time someone mentioned the word palliative, I got to tell you, I cried straight away because I don't know what the word palliative means. The only context I've ever had it in was with grandparents where, you know, very frail in the bed for two or three days. And it's as you say, the very pointy end. It's it's the very last little bit of your life. And in actual fact, I guess it is in some ways. But it's also so much more; if you can take that picture out of your mind, what it really is for someone that's thirty five and cannot take any more chemo, it can be the last day. It can be the last week. It can be the last couple of months. It's the bit that people don't know. It's the unknown part of the end of life process. It could be so long, it could be so short. And that's just humanity or that's just the human condition, is that we can't control it and we don't know how long certain things are gonna be.
Kellie Curtain [00:04:17] So you don't know how long you've got left?
Jules Domigan [00:04:19] No. And no one does. And you're a fool if you think you do.
Kellie Curtain [00:04:25] But you're not coming out are you? You're not coming out of palliative care.
Jules Domigan [00:04:32] No, no I'm not coming out. And that's a really tough decision. Not this really at yours. you don't really control that decision in many ways, but it's a very hard thing to come to with your partner if they're involved or, you know, with your family because of, of course, I want to be here for years long. But if if that's not the case, you really need to be honest with yourself and honest with your family. Because if you're not, you can't prepare. You can't have conversations with them that are really, really important. For example, my husband and I have to talk about how we would like to raise our child. And if I don't acknowledge the fact that I'm in palliative care and that I'm at that pointy end, then I don't get a say in how my daughter is raised. And that's silly. I mean, that's unfair on me.
Kellie Curtain [00:05:34] Yes, so, when you were first diagnosed and you were part of our young women's program, then you were pregnant with Rory and you had plenty of fight - you were very much a pragmatist. I always remember your quote saying, you know, I'm arrogant enough to believe that maybe I might be in that small percentage that can beat this. When did you transition? And so how have you arrived at where you're at now in your thought process.
Jules Domigan [00:06:11] Look I've transitioned through the advice of medicine. It's not really, it's not my decision. But what is your decision is how you approach the world and how how much joy you bring into every day. And I realised that if I don't approach every day deciding to beat this back then, like we're talking back then, if I didn't approach every day saying, no, it's not going to get meit's not going to get me that, I wasn't going to find the joy in those days. And I found a lot of joy. So if I decided back then that palliative care was going to start all the way back then, which the medicine didn't decide...I wouldn't have been able to travel as much as much as I did. I would have made all these decisions for myself that kind of take me to the sidelines way too early. And I wasn't prepared to do that. I wanted to I wanted to enjoy life and go travelling and help BCNA. You know, I wanted to be part of the world, still.
Kellie Curtain [00:07:27] So what has been the turning point? Do you have acceptance? Do you have anger? What are some of the emotions that you've now got now that your basically in the place that you're going to die?
Jules Domigan [00:07:42] All of them. Every emotion that you can imagine I probably have every single day. I think I accept my diagnosis. I accept that in less than a couple of months or however it's gonna be I won't be here anymore. But then I don't accept it. And the doctor will say something and I'll say. But is there any more chemos on on the horizon? How's the immunotherapy going? And he's kind of gives me this look, and he says ok we'll go through this again, any any go through the process again of where the world is at in terms of my diagnosis reflected on on all the current medicines and and he is happy to do that. He's happy to talk me through every single time and every single time we come to the same conclusion that we're not, that the world's not there yet. I think, you know, my personal opinion that if this had happened in the future, maybe immunotherapy might be a little bit further along or something else might be a little bit further along and things would be different. But they're not right now. And and every time I let myself drift back into thinking maybe they are where we want them to be. I have to emotionally get myself all the way back to they're not there yet. Which is tough. So I did choose not to do it, I find this whole process has been one of extraordinary sadness sometimes, but also extraordinary joy and kindness and fun. And I prefer to stay at that end and relish in it. Just dance around in the confetti that is cancer sometimes.
Kellie Curtain [00:09:53] So how do you find joy when it's such a sad time for everyone?
Jules Domigan [00:10:02] It is and it isn't. It's sad if you want it to be. And it's sad implicitly, too. I can't deny that. But. There is so many opportunities for me to sit here and say, I'm not going to see my daughter go to school for the first day, done that one, or I'm not going to see my daughter graduate high school. Been there for quite some time. Or, you know, the basic things that you think of when you have your first child. I have sat there and wallowed in that moment for for some time. And then sometimes too long. And that didn't give me any joy, no fun. That place is no fun at all. So I decided to find places that do give me joy. And, you know, one of them is my daughter, who is so weird sometimes. And I absolutely love watching her grow up now. Like for some reason she's walking around with her Bumbo and she puts it down the floor and then sticks her head in it with her legs straight and just head straight down. And I have no idea why she's doing it, but she does. And that gives me so much joy. And if I focus on that and I sit and enjoy that moment, cancer doesn't exist.
Kellie Curtain [00:11:39] Do you find yourself trying to protect those around you? The people that you love? Will they talk about it is my question?
Jules Domigan [00:11:50] No. They won't talk about it with me. I probably should protect them more. I don't because I think that they need to face reality. And the quicker they face reality, the easier it is on them.
Kellie Curtain [00:12:05] So is it a real issue? Is that, are people people dancing around the fact that you're going to die soon?
Jules Domigan [00:12:22] Look, I think what we're doing right now is finding the joy in every moment, so my birthday last year, we went crazy, we just we had so much fun and spent way too much money on a thirty fifth birthday. But in the long run, the money doesn't matter. And the joy does. And I had people come from everywhere. I think we had about over 100 people, which is huge right I couldn't believe that that many people would come and, you know, enjoy the day with me. it was a real it was a real pleasure. It was a real joy. So. Yeah, I don't think people are necessarily dancing, man. I think people may maybe coming on board and realising that it's not all that bad. There is a good sides to it, too. I'll try to pull the card every time we're playing board games and say, you can't do that, I've got cancer. It doesn't always work. My brother in law has no tolerance for it. I try to do it when there's not much cake left so I can get the last piece, I think I have done that quite a few times, especially when it's ice cream cake.
Kellie Curtain [00:13:58] In all seriousness though, would you like to talk about it more? Do you? You obviously talk about it with your husband but do you wish you can have the conversation with others?
Jules Domigan [00:14:11] I do, I wish people weren't so scared of it. I mean, I. You've you've heard me say before that talking about it doesn't make it happen any quicker. And I feel like people around me feel that, you know, if they say something, you know it might happen quicker. I don't know. It's a weird thing.
Kellie Curtain [00:14:31] I think that must be a very common emotion for people who are, you know, who have loved ones that are dying they think by discussing their fears or discussing their sadness that you're not going to be around will upset you. Is that how you feel? Is it about saying goodbye? Is there a need to say goodbye?
Jules Domigan [00:14:58] How could anyone be sad if someone else expresses that that they they would be sad if you weren't around. I think that's a wonderful thing to tell someone. You know, if if someone said to me, I really want you here forever. Thanks. That's really nice. You know, it's so strange. Then the other thing that I find very weird is that they don't want to be sad because they've sort of likened stoicness to strength. So they think if they don't cry or don't express anything sad or anything around me.... I don't know how else to explain it. Sort of stiff upper lip approach to me is going to somehow make me feel like they've got everything under control and that they are okay. And I don't care. I mean, I do care if they're not okay. But if they're not okay, it's okay. You know, we're together. We're best mates. We've got through everything else together. But being stoic doesn't make me feel any more loved. It just makes me feel like maybe they don't feel that maybe that they don't love me because they're not expressing it. I think you've got to be honest with your emotions with people, because the wrong message will be transferred. And I don't know if you want that.
Kellie Curtain [00:16:44] So. How have you prepared? Do you feel like you're prepared?
Jules Domigan [00:16:54] Oh, no. You know the one thing that's stressing me out right now is I have these big plastic tubs and I call them my sentimental boxes and they've got everything in there from my ballet shoes, my horse riding ribbons, my running race ribbons, my everything. You can imagine my beret from when I was in the army, my PT tshirt for when I was in the army, the physical training shirt, there is a lot of crap in there, but it's also got my diaries from when I was younger as well. And I'm really worried that the wrong people are going to read them. And now what I've done is just told everyone to go and read them. No one knew about it before. Oh, my gosh. I'm an idiot. Yeah. They have everything in there. And and I worry that when I die I can't, you know, defend them and stop people from going through and having a good laugh about who I thought I was when I was in year nine in high school.
Kellie Curtain [00:18:17] You've been certainly at no point have lost your sense of humour. I'm sure there've been some really dark times for you, but you do have a very dry sense of humour.
Ad [00:18:31] BCNA's My Journey online tool is a new resource that gives instant access to trusted and up to date information which is relevant to your breast cancer journey. For more information, visit my journey dot org dot AU.
Kellie Curtain [00:18:47] I think you said the thing about palliative care when people think palliative care it's the end, within that palliative care space, it's still very much a rollercoaster is it not?
Jules Domigan [00:18:59] Yes, very much. And it is about what you've done beforehand. And I did not want to talk to the doctors in palliative care beforehand. I did not want to come down to this. There's a there's a facility here in Canberra called Clare Holland House. I did not want to come down and inspect the property and see what it's like and talk to the doctors before all this happened. Because I wasn't ready to give up. I wasn't ready to hear palliative care - it wasn't on my brain. But because I did, I created a relationship with the head doctor here. And with all the fabulous nurses here and they had a file on me and they'd spoken to me and they knew what I wanted. And that was so, so good because I was just grateful for the fact that even though my husband knew what was going on, they knew as well. And I had people looking out for me.
Kellie Curtain [00:20:12] What do you mean by that? What you wanted.
Jules Domigan [00:20:14] Well they knew that I wanted to, I didn't want to die in a hospital. I absolutely was definitive about that. And they knew that I was a bit uncomfortable about dying at home. And if they could find a third option, then that would be preferable. And they did. They found Clare Holland House and found a bed for me here. So.
Kellie Curtain [00:20:39] Yes. So does that bring you a level of comfort, you know, with so much uncertainty in the last two and a half years? Now it seems like you've got a bit of certainty.
Jules Domigan [00:20:50] Yeah, and you know, that's the point that I have no certainty in my life at all. And it's like standing on a rug and there's someone shaking it all the time, constantly. Shake, shake, shake. And you're trying to balance and you're trying to be okay. So it's simple things really do knock you over. You cling on to everything that you can find. Because at this point in my life, aside from my beautiful daughter and my extraordinary husband, I don't have any stability. So I can't look forward to holidays of my friends. I've just had to cancel them all. You know, I can't I can't really count on anything. To be honest. And so the only stability is my room. And it's dumb to be so connected to a room, for God's sake. But I am.
Kellie Curtain [00:21:54] As I said in the introduction, sadly, you're likely to be one of three thousand that will die this year of breast cancer. So there's a lot of people going through what you are and will face what you're facing. What would you like them to know?
Jules Domigan [00:22:20] We actually said that last year, we said it's likely that you'll be one of the 3000 people in 2019 that will die of breast cancer. And I'm not. So I haven't lost all my fight. But yes, I know I won't make 2020. What I want people to know is that joy helps. Joy helps. Joy is like the antidote to everything. And if you if you enjoy knitting or if you enjoy a watching bike races or your grandkids doing playing soccer or whatever brings you joy, do it over and over and over again because it's the antidote. It makes things better. It really does.
Kellie Curtain [00:23:19] Well, I want to thank you for not only time now, but for everything that you've given to the BCNA community, because it's through your honesty and the open discussions that you've had all the way along with that, I'm sure, as so many others are going to benefit.
Jules Domigan [00:23:38] Oh, that's okay. Is there anything else that you need from me?
Kellie Curtain [00:23:44] No. You've done more than enough Jules, more than enough. We at BCNA were so thankful to Jules for sharing her sadness and joy in the hope that it will benefit others. A week after recording the podcast, Jules died peacefully surrounded by her family and a lot of helium balloons. It was her 36th birthday. If you or someone you know would like more information on end of life, BCNA'S My Journey online tool is a wonderful resource. Our Helpline is also available to answer any questions you may have. For any individual concerns, please contact your health professional. This episode of Upfront was produced with thanks to Dry July. I'm Kellie Curtain - it's good to be Upfront with you.