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Episode 26: Caring for a loved one

Episode 26: Caring for a loved one

 

We recommend listeners exercise self-care when listening to this podcast, as some may find the content upsetting. 

Let’s be upfront about caring for someone with breast cancer. Being a carer can mean many different things, and usually involves providing both practical and emotional support to a loved one.

In this episode, we are joined by Joel Domigan, whose wife Jules was diagnosed with metastatic breast cancer at the age of 34, when the couple had just fallen pregnant with their first child. In this episode, recorded while Jules was receiving palliative care, Joel opens up about his role in providing care and support for his wife while also trying to look after himself.

This episode covers:

  • the importance of looking after yourself as a carer and seeking support as required
  • coping with day-to-day life including work and childcare while dealing with treatment and palliative care
  • the pressures of being a carer; including the difficulty of finding time for yourself
  • the importance of being present and focusing on controlling the controllable.

Sadly, a week after recording this podcast, Jules passed away peacefully surrounded by her family. We thank Joel for talking to us and sharing his story at a difficult time for him and his family.

RESOURCES:

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.

Want to get in touch? Visit our website at bcna.org.au, email us at contact@bcna.org.au, or call our Helpline on 1800 500 258.

TRANSCRIPT

Kellie Curtain [00:00:06] Let's be upfront about caring for someone with breast cancer. It's a big job; from providing practical support in getting to treatments and doctor's appointments, stepping up at home and then being available emotionally, too. How do you look after someone you love as well as look after yourself? Stuart Diver has been on Upfront to talk about his experience as a carer. And today, we're joined by Joel Domigan, who is right in the thick of it. His wife, Jules, has been fighting breast cancer for more than two years and is now in palliative care. They have a daughter, Rory, who is almost two. A warning that some of the topics we are going to discuss are sad, so please be mindful of how you listen to this podcast. Joel, how are you holding up as a carer? Is that how you see yourself?

Joel Domigan [00:01:00] Look, I don't really see myself as a carer. Good afternoon, by the way. And look, no, I don't know, I've always seen myself as Jules' partner. And I think in my mind, the support that she needs just goes part and parcel with that.

Kellie Curtain [00:01:22] It's the proverbial bad sandwich, isn't it? You know, just a few short years ago, you and Jules just got married, both had amazing careers and life was great. And then it's just gone south. How do you reconcile that?

Joel Domigan [00:01:46] Yeah, look it took a it took a really sharp turn for us both. We were probably at a spot where we're pretty comfortable that we could take on the world and take on most things. Both our careers were going well, we had good plans for our for our life and where we saw ourselves going with the family. Everything was on track and then it just turned south. I guess it's just a stark reminder that, you know, not everything is in your control at the end of the day. How do you reconcile that? I suppose it's a tough one. For us, we're both fairly pragmatic people, certainly, I see myself as pretty practical. So you know, we saw that this wasn't something that we could change and we just had to deal with the best we can. For us, that meant, sort of refocusing our perspective on things, working out what was important for us and then trying to stay focused on achieving those things as best we could over what time we were given in the end. So, yeah, I mean, we had a period upfront where we grieved what could have been or what might have been, and there's periods throughout the whole journey where that happens as well. But I guess once we set our mind to moving forward, we were able to sort of compartmentalise some of that aspect and focus on the positives and the opportunities that we had, first and foremost, being our daughter, Rory. That was a tough decision to make early on, whether to continue with the pregnancy, knowing that although this was gonna be a huge blessing for us, there was a lot of risk involved with the pregnancy and there was gonna be a lot of tough times ahead just dealing with a toddler whilst also going through this tough time as well. So, it was pretty much action stations straight away, and just keep moving forward.

Kellie Curtain [00:04:10] I guess, long term too, it was the dramatic impact of that; about making a decision: your wife, at a time of great celebration, pregnant with your first child, she gets diagnosed with metastatic breast cancer. So there's that. But there's also, I guess, the contemplation of not only your future without her, but you being a single parent.

Joel Domigan [00:04:35] Yeah. That was a real tough one for me. And I deliberated on it you know, a reasonable amount. I do analyse things quite a lot, I spend a lot of time with my own thoughts about some of those things. Jules and I took a holiday down to Hobart as soon as we found out the news, just to get away from everything and sort of clear our heads and consider our future a little bit. From my own perspective, look, I wanted to be a dad anyway. I knew that it wasn't gonna be easy and particularly, you know, the thought of being a not just a single parent, because I come from a family where my parents are divorced. So when I think of single parent, I think of someone that takes care of a child sometimes and then the other parent takes care of them the other time. I look at the situation that was placed in front of me and placed in front of other people that end up getting widowed and being a sole parent is a different story completely. There's no time where you can plan on having it to yourself. You're sort of dedicating the fact that, you know, your life is changing and you have to be the person on the spot all the time. So that was hard to take. I've been trying to sort of work out how I was going to achieve that, particularly with my career, which is a busy career in the military. And look, that's still a work in progress and it's just something that I'm have to work on. I'll let you know in a few years how I'm going with that. That aside, I knew that Jules wanted to be a mum as well and I also wanted a piece of her to continue to live on as well. So I know that Jules is big on legacy and creating memories, you know, so that was a big part of it for me, and that was something that I could give her, knowing that a little part of her would continue to live on in Rory as we went forward, you know, at the end of the day, it wasn't a real hard decision for me to make, to do that.

Kellie Curtain [00:07:15] How would you, I mean your life has changed immeasurably, but you have continued to work until now. How have you fitted it all in, I mean, working, being there for Jules' treatment, just being there for her emotionally and looking after yourself as well. It's a massive juggle. How have you done that?

Joel Domigan [00:07:42] It is. Look, I think support and setting up a good support network is key to all that stuff. You know, from Jules's perspective, in particular, organisations like BCNA and others that can provide support for her have been vital. And then for myself, you know, family support is huge; family and friends. My family has been fantastic, Jules' family as well, noting that, unfortunately, her mum passed away during this time as well. But, you know, they've been great for me. Work has been really good; I'm an army officer and the Army has been extremely supportive to facilitate what I need. I've been fortunate, I guess, in some regards in that I'm posted to Canberra into what we call staff officer positions, so headquarters positions, so I'm not deploying, I'm not out on exercise or doing stuff. It is generally a day to day job. They've been great for me, just giving me the time I need. My bosses have been really good, but it's been tough, I'm not going to lie. It's busy; we get up, we spend time with Rory. She does have a carer that comes in to help Jules out, particularly in the early stages and more importantly, whilst Jules is going through some pretty heavy chemo, so during the day, she helps take care of Rory that takes a big weight off my mind that the support is there.

Kellie Curtain [00:09:35] So, just on that psychological assistance, still so often we hear that it's really beneficial. But actually taking that step sometimes is a lot more difficult. What made you do it?

Joel Domigan [00:09:50] Look, my mum's a counsellor. She specialises in marriage counselling. So, you know, talking about problems and talking about feelings has never been an issue within my family. And they've always been great advocates for that, my parents. So I'm aware of the benefits. Look, I like to be my own counsel a lot of the times and the rest I generally would bounce ideas off Jules. But I realised that if I didn't seek some preventative help just to have someone outside of the picture that I could just talk to openly, particularly in times where I couldn't confide in Jules due to health stuff or anything else that was going on with her, you know, I didn't want to present her with something that might provide anxiety for her, that I needed to put some preventative measures in place, and that I also was concerned that if I didn't do that, I might not notice if I wasn't handling things properly until it was too late. And, you know, I've seen people emotionally implode when everything gets a little bit too much and I just didn't want that to happen. So upfront we did it, got some help, I generally see or chat with a counsellor about once every six weeks was the gist of it. And at first, it was just having a chat. I felt perfectly fine mentally. And, you know, I still do. But it's just a great mechanism to sort of release some of that emotional burden you're carrying and free you up. And just, you know, the chats I have allow me to focus on some of the really good stuff. We cover a lot of good stuff. It's not necessarily grief counselling and stuff like that, it gives me a good opportunity to really focus and put things in perspective on some of the beautiful things that I have in my life.

Kellie Curtain [00:12:08] Do you think it makes you a better carer?

Joel Domigan [00:12:10] Yeah, I do. I think certainly in my case I think it does. It allows me time to reflect on how Jules might be feeling about a situation and how best we as a team can handle it and move forward positively. So I think it does help in that regard.

Ad [00:12:36] BCNA's Helpline is a free, confidential phone service for people diagnosed with breast cancer, their family and friends. Staffed by experienced cancer nurses, the team can help you with your questions, concerns and help you navigate through your breast cancer journey. Call 1800 500 258.

Kellie Curtain [00:12:57] So let me ask you about, I mean, it's been an incredible two and a half years. I know Jules once described you as just being that lucky guy, you know, the charmed life, the guy that gets the car spot at the front, like you're just one of those where you have a knack of good things happening to me.

Joel Domigan [00:13:23] I don't know if I go so far as to say lucky. I don't believe wholeheartedly in luck. I think you create your own luck at the end of the day. But yeah look I know it's a running joke between Jules and I that I seem to land on my feet in whatever situation I end up in.

Kellie Curtain [00:13:44] So how does it feel now? Everything was just on a fantastic north path. And now this enormous roadblock. How do you get around that?

Joel Domigan [00:14:02] Well, you can't get around it at the end of the day, you just got to keep driving through it and it's the same thing we say to each other all the time. At the end of the day, we just got to drive on and handle it as best we can. It's, you know, it's a real kick in the teeth. And, you know, cancer is just a brutal, real brutal disease, really, it just takes so much from not only the individual, but from all those around them as well. So, look, I just I know that it's tough, I know that there's going to be some times coming up ahead that are going to be extremely tough as well. Over the journey, over the last couple of years, I'm reasonably good at compartmentalising that to set that aside, knowing that I'll have to deal with grief and a bunch of other things later. But if I start trying too early to focus or look at the grief side of things or the negative aspects of our situation, then it's sometimes harder to focus on all the positives or opportunities that still exist. So which for us were the birth of our daughter Aurora, Rory. Who's just an absolute gem and a legend. And I just I can't get enough of spending time with her, she's a fantastic kid. And then, you know, the time to take a step back from work, from other pressures and just say, look, let's get some let's get some travel in, let's knock some stuff off the bucket list, let's do all these other things that unless you are given such a driving force or such a forceful impetus, we probably would have dragged our butts on and probably not done for if not many, many years then ever. So that was a big driving force behind doing those things and they're experiences that can never be taken away and memories that can never be taken away from myself and we've documented it all so I can show Rory the journey that we went on because we took her with us. And I'll just be able to pass on some of those things to her in the future.

Kellie Curtain [00:16:37] What are some of the unseen pressures, do you think, that fall on a carer? Because you must really want to do the right thing by your wife, the right thing by your daughter you know, it's obviously a constant juggle. What are some of the real pressures that you feel, if any?

Joel Domigan [00:16:58] Yeah, I think finding time for yourself is a big pressure with everything, particularly my situation. I think it's difficult sometimes to find time for yourself. I'm kind of an extroverted introvert, so I enjoy people's company and socialising greatly, but I need to recharge my batteries by myself. So taking time out to do that is very difficult sometimes. That's one of the pressures. I think the other one is the compartmentalising I was talking about, or being able to maintain positivity because how I react to a situation is going to influence or impact how Jules reacts to a situation as well. And that in turn, can then influence, you know, as a team or as a unit our entire outlook. So staying positive or being able to compartmentalises is tough. That's a tough pressure, particularly because a lot of the time the carer's always asked how the other person is doing, so I'm always asked, how is Jules doing by every single person that meets me in almost every single conversation for the last two years, that's a real hard pressure to continually either tell the same story or provide evidence then, you know, the unseen pressure of that is that you generally will invariably try and put on a brave face sometimes for the people that you're talking to as well, because you feel responsible for their emotions or how they are feeling as well, and you don't really want to make them unhappy or sad. Maybe this is just me, but that's how I look on things. So, you know, I don't stay positive all the time when I'm talking to people. I'm pretty honest about how it is and I'm pretty open about the situation that we're facing but that's certainly one of the bigger pressures is constantly having to go over that and the bigger ones, particularly at the moment but throughout our time when Jules has been admitted to hospital, is those times as well. When you have to step up and organise basically, everyone that wants to know what's going on or wants to be involved, wants to help, absolutely, but wants to see Jules and it can be a big task sometimes and a bit daunting even just to, you know, you want to spend all your time with, I want to spend all my time with Jules when she's in hospital. I don't want to spend it texting or e-mailing people unnecessarily, giving them updates. So, yes, there's a lot of little things, but I guess that's probably the bigger ones for me.

Kellie Curtain [00:20:08] And so Jules is in palliative care now. And just a few weeks ago, you thought that you were at the end. There must be a massive ride of emotions when you think you've arrived at what you've tried to prepare for, and then you know, she bounces again.

Joel Domigan [00:20:34] Yeah. It was a really up and down, an emotionally taxing sort of month, I suppose. You know, initially, Jules, the week that she went into hospital, she was doing pretty good, to be completely honest. And she had been doing fine. But what was a mild cough that she kept telling me was fine, you know, after a new chemo treatment rapidly turned into a chest infection and she went downhill very quickly. So I was I mean, I was terrified initially and everything was happening a lot quicker than I thought it was gonna happen. And I had, you know, all those things rush through your head that you haven't had adequate time to say goodbye or say these things. Things that are not necessarily left unsaid but, you know, all those things you wanted to close a loop on and talk about. And don't get me wrong, we've been really good at talking about things over the last two years, but they're just those common and natural fears that sort of pop up when you're in a bit of a scary situation. And, yeah, I guess she wasn't looking to improve and I had to go through the process of where I thought I was. Well, this is this is goodbye and we'll move her into palliative care. And then, you know, we took her off all the antibiotics and did that. And her doctors did not have any expectation that she'd recover and they were thinking hours to days. And she just remarkably bounced back, which is just a testament to the type of person and the strength that she has, the will that she has. And every day we're just taking it now day by day as best we can. But I didn't think I'd have another conversation with her and so even being able to do that, being able to close a loop, as I was saying, on a few things that we had planned for Rory as she grows older that Jules wants me to do on her behalf and a few other things, just some of those things that was fantastic to get that opportunity, to have those discussions and just to see, you know, Rory coming in here and interacting with Jules and all those things is great. But as you say, it's a rollercoaster because I know where the ride ends and there's only one way it does end. So it's tough to resolve that. And it's an emotional battle. Because we're at the end game, I suppose, it's like the weekend is coming to a close and you wanna do everything you can on Sunday. You don't want to focus on going back to work on Monday because you won't enjoy your Sunday as much, it's a bit like that. But we just got to stay positive.

Kellie Curtain [00:23:36] I think you've said before that even when you think you're ready, you're just never really ready, even when you've prepared and had open conversations like you and Jules have had at the end of the day. You've still got a young child at a time that you need to go home to, a dog that needs feeding. And there's a lot of the ordinary mixed in with all of this.

Joel Domigan [00:23:58] Yes, there is. But thankfully, particularly in you know, in the last few weeks, family have just stepped up, amazingly, to help out with that. But, yeah, there's the day to day life that has to occur. And I know at some stage, and I'm on leave from work at the moment, but that's that has to go back to occuring as well. And to be honest, I don't know how it's all gonna go down. But yeah, there is a lot of that. And I guess the sentiment from me from the very beginning was that, and I said this when I've spoken to people over the last couple of years, no matter how ready we may think we are, you will never, ever be ready and you won't know how you'll feel until you feel it, which is part of the reason why I've really just tried to stay focused on being present in the moment, because if I deliberate on stuff that's outside of my control too much, I'm gonna sort of ruin my opportunity. In the meantime, for something that is going to happen regardless. And I won't be prepared for. And I'll deal with it as best as I can when it comes on and that's how I look at it. At the end of the day, when Jules sadly passes, that's how it's gonna be. I could fall to bits. But I'll do my best when the time comes.

Kellie Curtain [00:25:25] Well, thank you for being upfront with us. People like you and carers as a whole is so important and we need to make sure that we look after our carers as well.

Joel Domigan [00:25:38] Yeah, absolutely. I think it's just such a vital part of the journey, I think. As I said at the start, you know, whatever you want to call it, for me, it's just a partnership. And, you know, I made a commitment to Jules very early on when we decided to get married that I'd be there for her and I take that responsibility seriously. She's easily the most wonderful person I've ever met in my life. So it's just part and parcel of what being a team is and how important that is for both of us. Yeah, it's my pleasure at the end of the day, as hard as it can be sometimes.

Kellie Curtain [00:26:26] Thanks, Joel.

Joel Domigan [00:26:27] Thank you.

Kellie Curtain [00:26:30] This episode of Upfront is brought to you with thanks to Dry July. And if you'd like to talk with one of our cancer nurses about how to help your loved one who is a carer or has breast cancer, please feel free to call our Helpline on 1800 500 258. For any individual concerns, please contact your health team. I'm Kellie Curtain, and this is Upfront.