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Upfront About Breast Cancer Podcast

Episode 10: Stuart Diver on supporting a partner with breast cancer

There are almost 2.7 million carers in Australia, but many people who provide support to someone with breast cancer don't see themselves as a carer - especially if the person with breast cancer is a partner, a child or a close family member. Stuart Diver was the sole survivor of the 1997 Thredbo landslide which killed 18 people, including his first wife Sally. He found love again with his second wife Rosanna, however she was diagnosed with breast cancer shortly after they returned from their honeymoon and Stuart cared for her until she died from metastatic breast cancer in 2015. Stuart is still living in Thredbo, where he is raising his and Rosanna's young daughter Alessia. In this episode of Upfront, Stuart speaks about his experience supporting Rosanna through early and then metastatic breast cancer, and the importance of carers being proactive about their own mental and physical wellbeing in a time of stress and uncertainty.  


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 was made possible through the Supporting Women In Rural Areas Diagnosed with Breast Cancer program, funded by the Australian Government through Cancer Australia.

TRANSCRIPT

Kellie Curtain [00:00:05] Let's be upfront about caring for a loved one with breast cancer. Many Australians diagnosed with breast cancer will have a partner, a family member or a friend who provides regular support, personal care or assistance to them both during and after treatment. There's almost 2.7 million carers in Australia, but many people who provide support to someone with breast cancer don't see themselves as a carer - especially if the person with breast cancer is a partner, a child or a close family member. Today we're talking with Stuart Diver. Stuart was the sole survivor of the 1997 Thredbo landslide which killed 18 people, including his first wife Sally. He found love again with his second wife Rosanna. However she was diagnosed with breast cancer shortly after they returned from their honeymoon and Stuart cared for her until she died from metastatic breast cancer in 2015. Stuart is still living in Thredbo where he is raising his and Rosanna's young daughter Alessia. Stuart, welcome. Caring for the carer. So you were Rosanna's carer on well, right throughout the journey but it took on different roles. So can you take us through her diagnosis and when it came back?

Stuart Diver [00:01:19] I mean it's it's it's interesting in the beginning I mean Rosanna was diagnosed yeah the week after we got back from our honeymoon which was not the the greatest timing. And then yeah obviously from my point of view you very much just click into survival mode then and you just... and I know that a lot of people have the same experience you're just trying to say, what can we do about treatment? I want my partner to live. What can I throw at it? What are the resources we can go? So it's very much a very physical sort of thing. You know there's surgeries and then there's treatment and there's chemotherapy. It goes on and on and on and I think for that initial period yeah, both Rosanna and I were in that phase. So it's a very hands on caring phase. And I think that lasts you know for those months if not the first couple of years until you get through that. And then once you're through that and it sort of levels out, it very much then switches to a real emotional caring phase and I think that that's where sometimes we sort of get lost because people think oh the treatment's finishe so therefore you're cured and life moves on. But the reality is that actually in a lot of ways it just gets harder and I think that that's the bit that I really struggle with. I think that males, we're really good at the survival mode and we're really good at the hands-on mode. But then when you get into that long-term care for someone and Rosanna basically had you know another or almost 10 years yeah before the cancer returned and that's a long period of time to go through.

Kellie Curtain [00:02:52] Being a carer.

Stuart Diver [00:02:53] Yeah being a carer.

Kellie Curtain [00:02:54] So in the initial stage. So in 2002 she was first diagnosed as you said just after your honeymoon when she was diagnosed with early breast cancer, what was your role as a carer then in that first part?

Stuart Diver [00:03:06] Well I mean the first part is you really are... You're driving to hospital. You're going and seeing specialists, you're doing that sort of stuff. You're making sure that, you know, Rosanna's physical health is in good shape. That's basically what you're doing. You really are just providing that support role and you're providing meals and you're making sure that you know you can go to the gym and you can get outdoors and all of that sort of stuff. So it really is very much a physical role. There's obviously an emotional role there as you would have in a normal relationship but it really is focused on that side. But it still does take a toll on you as the carer obviously because you are then having this focus as well as everything else that's going on in your life and you know, we didn't have children at that time so it was just the two of us, but there was still there was an enormous amount of work in that providing that support role. So I think that that's where I was lucky. I had a good family around me and good friends so I was able to talk about stuff, I was able to get support, I was able to go out and have some time for myself you know during that period which I think is really crucial. I mean. And that's, this will be as you know Kellie, thise will be a theme throughout our discussion today: I'm a big advocate of you know getting professional mental health support. I had a great psychologist at that time and he's been with me for over 20 years now. And you know I basically came in contact with him after the landslide in Thredbo and he has been with me all the way through. And I definitely used him during those early stages with Rosanna. I mean I would have, after her diagnosis I would have called him three days later. Because as we know you know that is the really devastating time when you've got no idea. And we all instantly think cancer, the person's going to die. And I was thinking you know, I've lost my first wife and now I've just married my second wife and now she's going to die. And you don't realise it actually that's more likely not the case and you are going to have you know a much longer period and hopefully forever together if it works out.

Kellie Curtain [00:04:58] Would you suggest that even with an early breast cancer diagnosis that some mental health support would be beneficial? Because people think oh, if it's just early breast cancer...

Stuart Diver [00:05:10] Oh it'll be fine, we'll get through it. And I think with increasing survival rates and all of that sort of stuff it does sort of take on "I know you'll be fine and you'll get through it and it'll all be good". I mean it's equally as traumatic and the hard bit is, it's really good to go and talk to your friends. It's really good to talk to family but that only gets you through up to a certain point. And it's why I use the analogy if you break your leg you don't go down to the local hardware and buy some plaster and go home and just wrap it up and say oh it's going to be fixed. I mean you go and see a doctor and you get an X-ray and you do that and that's the same as this. And it's not necessarily just for the person who has been diagnosed with the cancer. You can't provide support to that person if you're not in a good state of mental health yourself. And I think that's where we miss it. So we try and do that. The carers put themselves out there they throw everything at it. Six months in you're totally drained and you're just going, not realizing that this could then go on forever. And I think you know the biggest thing is anyone who's gone through a similar journey knows it's the uncertainty of what's going to happen. So you don't know if it's going to come back. You know it's every three months and you going in getting tests done and are they going to come back clear? That constant nagging in the back of your mind takes a huge emotional toll. And there's you know... And that's where I with my psychologist there was a myriad of ways you know through all the stages of Rosanna's journey that we use different tools to be able to deal with that. And that's hugely important.

Kellie Curtain [00:06:39] You mentioned before that you know you made sure to take time out for yourself. And I'd imagine that it becomes especially in the early stages of any diagnosis... That it's all consuming.

Stuart Diver [00:06:53] Yeah absolutely. And it is. And one of the big things that I did was physical exercise. Like I love the outdoors and that's and it still is to this day, that's my form of meditation. So I'll go out and I'll go for a long bike ride or a long walk or whatever I do. And that is the way that I clear my mind, reset my brain and then I can come back in. And one of the big things is you know if you're in and out of hospitals, you're driving... Like we obviously lived in regional New South Wales so you're driving two and a half hours to get treatment. You're in. You're sitting around and you're basically, you know very sedentary, for a lot of that time. So to stay physically fit is crucially... It was crucial for Rosanna as well we used to do a huge amount of stuff even when she was having treatment. But a lot of that was actually involved around being able to process things mentally and clear your mind and then come back in. And you know when you get the endorphins flowing around your body after exercise it's a beautiful feeling and that's sort of you know that was a big part of that you know of that therapy as well.

Kellie Curtain [00:07:50] Well I'd imagine also makes you a better carer if you can step away and come back and otherwise it's...

Stuart Diver [00:07:56] Yeah absolutely. I mean it's not saying that you know I didn't go down to the pub and have beers with my mates and you know and chat about that sort of stuff. But the reality is you're not really going to go down to the pub have beers with your mates and talk about your wife's breast cancer. I mean that is even in this day and age is you know an unlikely topic that's going to come up. So yeah the reality is you are on your own and you're really trying to process it yourself or with your partner and when it's just two of you that can become, you know, at times really difficult to do and that's where I always say you know my psychologist, Rosanna ended up seeing my psychologist as well and we'd do joint sessions, we'd do sessions separately which works really well. There's obviously stuff that you can't talk about to each other. There's stuff that comes up that can be really difficult. Yeah. As you go through those stages and so yeah that was the absolute key.

Kellie Curtain [00:08:47] When you're seeking support you've talked about the importance of it and we know traditionally men are not so great at doing that. I know you speak from personal experience about the benefits of a psychologist but you did try otherwise first!

Stuart Diver [00:09:03] Yeah I mean absolutely. I mean I think it is you know is all good Australian males do. We try and all males do we try and do it ourselves because that's what we've been taught. That you must stand up be strong and go forth and do it yourself. So you try to and the easiest way that we do it is we'll go out and we'll drink. And so you know you do that and that'll be awesome and that'll but it doesn't work.

Kellie Curtain [00:09:30] Or it numbs the pain.

Stuart Diver [00:09:30] Numbs the pain . The problem is the bloke crying in the pub is not actually... He's drunk and crying and that's not the same as being sober and emotionally crying. And actually... And then the next day you wake up with a slight hangover and you're dealing with your hangover and you're dealing with your partner again and then you just get back into this.

Kellie Curtain [00:09:51] So it's just that it's that layer upon layer upon layer.

Stuart Diver [00:09:54] And it elevates and do we've got to realise is that it's not it's actually not it's not about us. The carers you know.

Kellie Curtain [00:10:00] But it sort of is, isn't it?

Stuart Diver [00:10:01] It is to a degree but it's not. And so it's it's about the person who is, you know, who has cancer and is trying to survive. That's the number one bit. But then to be able to do what we need to do as a carer and as a partner, but anyone who's a carer, you need to make sure that your in the absolute best condition that you can be. So if you're drinking heavily, if you're not exercising if you're doing all that stuff then obviously that then becomes about you. Because you're the one out there drinking, you're the one thinking that you're doing the right thing but you're not. Then you build more pressure on yourself and then you get into you don't turn up to work and then you start all of these things start to spiral. So what I'm saying is that it is about the carers. But if you can keep the focus of: it's really about that person who's going through the cancer and them surviving. How can you best provide support for that? The only way you can do that is if you're in the absolute best condition you can be and that's physically and emotionally. And so if you're not giving yourself the best opportunity to do that then that's where you fall down. And so and that's what happened to me. I admit early on definitely would you know go out... It sort of was more after Sally had died in the landslide that I did that that. I really went out heavily and that was my way of dealing with it. And I really didn't... I had no real mental health care after the landslide until about six months afterwards and that's when I hit the wall. And I think that people would find that same experience in caring with someone with breast cancer because that first six months as we've discussed is so full-on and so hectic and then you fall off the edge at that. And I think that that's where a lot of carers struggle and that's...

Kellie Curtain [00:11:48] They get to breaking point before they actually seek help.

Stuart Diver [00:11:49] And we always hear and that's what happens because that's human nature. We'll try and do it ourselves and we get to that point. My advice is to don't. And it's not necessarily about seeing a psychologist you know first off it's about maybe just talking to a counselor. There's lots of other support groups out there. Might just be getting into a group of carers. You know three or four of you and talking about your experience. And sharing those experiences so you don't necessarily need to go all the way to the top rung straight away but you've got to be also aware enough of yourself and your own emotional wellbeing that when you see those signs that you are drinking too much or you are avoiding going out even or you're doing... You know any changes in who you are emotionally or in your behavior, it is a signal to say there's something going on here. And you know go and get some help for it. And for me it was it was drinking. It was I had no problem being social and being out there and doing that sort of stuff.

Kellie Curtain [00:12:47] It was almost like this is not happening type thing.

Stuart Diver [00:12:50] Yeah that's right. You double up and away you go and that's what we do. Because we try and block it out. But you're never going to do it. So whether it's in the initial stages of you know diagnosis or whether you're you're going to get metastatic cancer it's going to get you at some point. So and you can either do as... That's the big one you know talk about that with Rosanna you know before she died, it's hard work getting mental health help from wherever it is is hard work. It's not easy you know. And you've got to put yourself through it. But it's like it's like physically training. You can't expect to just go out and ride a bike a thousand kilometres. It doesn't work. You have to put in the training and mentally it's the same. You know, I read something yesterday about resilience which, the word sort of grates on me a little bit, but we need to be resilient. We need to be more resilient in our society. But you only become really resilient if you actually practice. And so you can't just say oh I was born resilient people say you know. I was you know I admit it. You know I'm mentally strong I've been through lots of things in my life and that all adds into and that has probably made me more resilient. But if I just go yeah whatever and don't actually think what is it that makes me resilient? What is it that makes will make Alessia resilient? How are we going to do that? So whether it's taking Alessia... The other day we went on a big eight kilometre walk in Thredbo we came back to get on the chairlift to go down the chair lift and it was on wind hold. So it was stopped. So I made Alessia walk two kilometers straight down the lift line which is really steep and really hard.

Kellie Curtain [00:14:14] Thanks Dad!

Stuart Diver [00:14:14]  And we got to the bottom. She couldn't walk the next day. But then I thought in the back of my mind, how cool is that? Because that is building resilience in her. Building resilience in me because I had to put up with the complaining! But we as adults have to actually do that to ourselves. So when I talk about you know me going for a bike ride and how good that's my form of meditation. That's also my form of you know making me more resilient. Because I'm putting myself through physical pain, I'm doing all of that sort of stuff. So we need to train for that as well. And I think that that's the hard bit. It's you can say if you're going to see a counselor, you go and see a psychologist for a one hour session. If you do nothing with that afterwards then it was the biggest waste of time and money ever. And that's the bit you're going there to get the strategies and the tools to make your life as a carer or as a supporter and the person's who you're looking after's life better. And I think that that's that's the real key. It's not easy. It's not... Hard work. It's not just like I'll take a pill and I'll feel better. That's not how it is. And I, you know, 20 odd years on after the landslide having had multiple sessions with my psychologist it is still hard work. Every time I talk to him it is still, you know, I'm only talking to him because there's something not quite right going on my life. And in saying that you know I've spoken about before I've had periods of five years where I haven't seen him. So it's not like this is a weekly session.

Kellie Curtain [00:15:37] You haven't got him on speed dial.

Stuart Diver [00:15:38] No not at all. And he actually says that I should probably call in more. But I, my personality is giving me the tools I'll go away and work on it. And if it goes pear shaped in three months I'll come back and we'll have a look at it again. He is on... I do have his number obviously. He's on speed dial if I need him. And it is amazing because you know Rosanna's his first diagnosis you know, first person I called, second person I called. Rosanna's metastatic, you know, diagnosis first person I call because they're such massive events in my life. There's... I can't deal with that on my own. And so therefore get that in a one hour phone call to him you're back where you meant to be. You've got the tools...

Kellie Curtain [00:16:18] Possibly without not knowing it either.

Stuart Diver [00:16:20] Absolutely. Yeah.

Kellie Curtain [00:16:21] And it's not like you go oh ping I've got it.

Stuart Diver [00:16:23] Yeah absolutely. Even now. I mean I spoke to a couple of weeks ago about Alessia because there's a few a couple of concerns. Is it just normal development... Developmental growth with her emotionally? Or is it something that I should be concerned about? So after an hour of that you've got some tools on how to deal with that. You're comfortable that this is what's normal. Just let's just keep a check on this for the next six months and away you go. Now I think that that's an awesome way of living your life, because it gives me surety. I'm not relying on him as a, you know, as a crutch in that I need him there every single day. But it's just having that thing in the back of your mind that gives you the confidence that you're on the right track and that's the real key to mental health. And it's all about, you know, I've had some people say to me I but can't you just go and tell him whatever you want and whatever. I say to you you'll be crazy. Like it's 280 dollars. So it's a big waste.

Kellie Curtain [00:17:12] It's a fairly you know... the wine is cheaper!

Stuart Diver [00:17:17] Absolutely! I mean it's like having that it's like having the independent umpire in your life and you can tell them anything you want. I think that's the key is that the you can talk to your partner or you're like he can talk to you close every landfill or you like but that to have someone who's a third party independent of what's going on. And my you know my psychologist he is brutal! And he will pull me up and say hey you got that all wrong. Like what are you doing? That is not how that's not how I see that paying out at all. I'm going wow you know. That is great to have that person in your life and quite often friends and family will never tell you.

Kellie Curtain [00:17:52] Just on that. So for Rosanna after she was diagnosed... what was some of the things that helped her?

Stuart Diver [00:18:00] I mean yeah it's funny they're very similar things. In that you know it is that trying to keep your life as normal as you possibly can. So trying to keep a routine in your life, trying to get up, do what needs to be done. Because you know I can imagine for her the feeling was exactly the same. You know I've got cancer I'm going to die. This is the end what am I going to do? So once he can get through that stage yeah and obviously once you get through the trauma of the surgeries and the chemo and everything else then it really is oh this is just my life. Now my hair's growing back. It's back to normal. Everyone else is pretty well moved on you know. So therefore I may as well just get back into my normal life. But the problem is you've still got that whole nagging thing in the background that you know I have I survived breast cancer. Is it still there with me? Is it going to come back? And I think that that's the most difficult thing because it is just with you the whole time. So for her I mean I think it was great. You know the same thing. She had great friends around her, really good family. She had you know but. And that's great support. She had a really good psychologist and she also you know we kept that routine of physical exercise and doing things in life just to make sure that it was still normal.

Kellie Curtain [00:19:11] And did she reach out to BCNA? We have a lot of resources. How did that assist?

Stuart Diver [00:19:16] Yes she did and that was in 2002 for initial diagnosis that was very early days and that was. And so yeah there wasn't a lot of resources around at that point in time. But then as it progressed and got on then obviously all the BCNA resources etc came online and that was where you know she really did you find that invaluable. Because there is so. You you go into this one day having no idea about cancer at all. Breast cancer. Any cancer. And then the next day you're expected to know everything.

Kellie Curtain [00:19:46] Well you become an expert or a  Google expert.

Stuart Diver [00:19:48] Yeah a Google expert, we know what happens with Google experts is... it's not a good outcome. So yeah to have that resource and that's you know obviously why you know I'm on board with BCNA. Because that resource is just absolutely invaluable. And it gets better and better as you know it gets developed over the years. So you know I'd say now the resource is so much better than it was then which it is because it just has so much information, the information is correct. The advocacy is there but all of that is... That's crucially important because we know that knowledge is power. The more knowledge you have whether you're omeone with cancer or whether you're a carer is what gets you through that. Because when you're sitting down with a specialist or you're talking to someone in the community or you're doing whatever yeah the more knowledge you have then yeah the more comfortable you feel about it.

Kellie Curtain [00:20:37] What we often hear from our women and men is that like you said that hardest time really is after the treatment's stopped. The hair is growing back and the world continues to turn and we call it handing back the vacuum cleaner. So all of a sudden you're left with living with cancer and everyone tends to forget.

Stuart Diver [00:21:00] Yeah that's. Absolutely.

Kellie Curtain [00:21:02] So that is another challenge. How do you balance that that fear and also trying to get some normality?

Stuart Diver [00:21:11] Yeah yeah I mean it is a really tricky one because it's there but it's because it's there the whole time I think it's like pain. You know people who live with chronic pain are sort of do that comparison. It's there the whole time and it's how you manage it. And so and that's where your mental health comes into it in such a big way. So if you know. There's two ways of doing you can sit around and say I've got I've got cancer sure it's gone away but it's going to come back at some point and this is the end and it's doom and gloom. Or you can say, that's there gone away for the moment. So whether I call myself a survivor or whatever it... Rosanna never used to use that term sort of didn't sit well with her. But.

Kellie Curtain [00:21:52] What did she used to...?

Stuart Diver [00:21:52] She has to. Oh well she did. I mean she she was very much. She didn't you know join groups to talk about it. She was very insular in what she did. She just yeah. Her and I dealt with it and that's how we sort of did it.

Kellie Curtain [00:22:04] But if someone asked her what would she have said?

Stuart Diver [00:22:07] Yeah. Well she said yeah that my yeah my cancer is in remission. So she would say and then you know and hopefully it's going to stay away so. But I mean you have you have that choice of you can either moan and groan or you can say I'm going to embrace life. I've been given a second chance and I'll go again. And Rosanna you know very much did that we did a huge amount of travelling. We did a whole lot of stuff and obviously even with all that treatment she was you know told that she would you know was highly unlikely to be ever able to have a have a baby. But we we kept on trying that and that was her bit of hope. But I mean that came with massive complexities as well. In that you know I was there sitting as you know still in some role being her carer there but definitely being you know her partner there and the one who is supporting her, thinking well if you're gonna have a baby and the cancer comes back...Where does that leave me? And then you end up dying. And obviously that's what ended up happening. But you know it's also every thing, big thing or little thing in your life it just stays the whole way through with you. But what you've got to do and it's the most difficult thing to do ever is you've got to say yep that could be the reality. But will that stop me? You know or Rosanna and I having a child. And thank thank goodness it didn't because for those four and a half years that Rosanna got to spend with Alessia would have been obviously formative in Alessia's life. But I know for Rosanna that was one of the greatest things ever in her life. So you'd never ever take that away. Now you can say yeah. And I can be selfish about it and say yeah now I'm left as a single parent with a with a child. But that's also been the greatest thing for me as well because you know that's helped me immensely as I've gone forward with her. And you know she's eight and a half now and it's amazing. So you wouldn't you wouldn't take anything back but it's still all of those thought processes go on. And how how you deal with those, it's seriously you have to isolate them, deal with each one individually, work out what the best strategy is and then move on and go from there. And we had lots of great discussions you know just in regards to having a baby, you know. As to was it  the right thing was it the wrong thing. You know there's lots of moral dilemmas just in that question alone.

Kellie Curtain [00:24:08] So I'd say there's a lot of what ifs to deal with.

Stuart Diver [00:24:11] And that's life that is the whole biggest problem. But you know it's when you've got when you're living with someone who's got cancer the what ifs just become massive and they affect every part of your life and they you. And it's. And this is the hard bit that people you know, the financial strains, all of those things all build up and they all put emotional pressure on a relationship and you can see why you know some relationships fail under that pressure because it is yeah it's enormous and I think that you know that's why I talk about it and you know we haven't really got into the you know Rosanna's journey through metastatic cancer but it's Yeah yeah that's why I talk about it because the the health and the mental health of the carer is in a lot of ways equally as important as the health of the you know of the person who's going through you know suffering cancer.

Kellie Curtain [00:25:04] Mm hmm. So knowing what you know now and having done care on two different levels is there anything that you would have done differently.

Stuart Diver [00:25:14] There's always things you do differently in life. It's an interesting one.

Kellie Curtain [00:25:22] What's what are you the most proud of. Yeah.

Stuart Diver [00:25:25] I mean yeah. I mean the bit that you'll always find I think and everyone would say the same is: the best thing, the best feeling ever is being able to care for someone and that has always been one of my fundamental beliefs. if you can care for someone it's absolutely rewarding.

Kellie Curtain [00:25:41] And a privilege.

Stuart Diver [00:25:42] And a privilege and to be able to do that, to be able to go through that, experience that journey with someone. Yeah. As you said it really is. You know something that's hugely significant in your life. And it sets you up as a human being as you go forward and hopefully care for people. And you know if we say that as a society what do we want? We want a caring society. You know it's people's number one sort of thing that I just want to live where everyone loves each other and looks after each other. So to go through that experience for me has been amazing. And you know I always say you know the same thing. To go through the experience with Sally and then to have that opportunity to go through that experience again with Rosanna, it's truly been something that is so unique you know unique obviously for me. But it's it's such a unique thing and then to be able to sit here and share that with people I think is the greatest outcome of what you know I've been through in my life. Because if I didn't talk about it and I just went and sat in a dark room then I sort of look back at that and go well that's a really a little bit of a waste. So and that's why I'm involved with BCNA. That's why you know I love doing this sort of stuff and talking to people it's because if there's one thing it can keep Rosanna's memory alive and keep the memory of how much she loved and cared for people and looked after people not just Alessia and not just myself. The one thing that will keep all that alive is being able to talk and keep her memory alive and make sure that it get shared. And it was funny yesterday when I told Alessia what was coming down to do today and she said "I want to come too! I want to come and talk about Mummy!" And I'm going you know eight and a half. One of the reasons you know when I spoke with KP originally when I was coming on board with BCNA was all about let's. This will be a really cool thing because at some point Alessia might want to get involved and be a great way of her keeping the memories of her mum lived. I just didn't think it would be know when she was eight and a half! So that's just so awesome. She wants to come to all the lunches, the big lunches with all the ladies. I think she wants to check it and see.  

Stuart Diver [00:27:42] If there is. Any. She wants to protect me!

Kellie Curtain [00:27:46] No applications please!