Episode 21: Raelene Boyle on pulling herself out of the darkness
In this episode, Upfront sits down with Australian Olympic legend and BCNA board member Raelene Boyle AM, MBE.
Speaking openly and honestly about her cancer journey, Raelene discusses the mental impact of her breast cancer diagnosis, the experience of survivor guilt, how the darkness can still overwhelm her and the strategies she’s developed over the years to pull herself out of it.
This episode takes a deep and personal look at Raelene’s life as well as the important and celebrated role she has played within BCNA over the last twenty years. It covers:
- The importance of a support network
- Coping with depression
- Dealing with the “what now?” after treatment ends
- Exercise as a positive coping strategy
- Summing up twenty years involvement with BCNA
- My Journey online tool article 'on 'Coping with the emotional effects of breast cancer treatment'
- BCNA online network
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 Cancer Australia.
Kellie Curtain [00:00:05] Welcome to Upfront, a podcast series where breast cancer survivors share their experience good and bad in an effort to help others in their breast cancer journey. In this episode, we welcome Raelene Boyle. Yes, she is an Australian sporting icon. Her athletic achievements are endless. She's also a survivor of breast and ovarian cancer as a founding board member for Breast Cancer Network Australia. Her commitment to BCNA and helping Australians with the disease has been unwavering for more than 20 years. In fact, Raels, as we affectionately call her at BCNA has often said that her work in advocacy means more to her than all her sporting medals and accolades. Let's find out why. Welcome Raels.
Raelene Boyle [00:00:51] Thank you, Kelly. Why? Well, you know, the achievements in the sporting world were something that were now, I realised, quite shallow and was a physical thing. It was something I could do well, I was gifted at. It wasn't you know, the challenge was getting out to training every day and doing the hard yards and making it work when it came to a key race. But with the breast cancer and I was in charge of it, I guess that's the bottom line. But with the breast cancer, I wasn't in control. I didn't understand it. I didn't know where the treatments were going to take me. I didn't know whether I was going to live or die. And it almost seemed like I had absolutely no control over that situation, which I didn't.
Kellie Curtain [00:01:34] So it's a while ago since you were diagnosed, 1996. So it's coming up to 24 years.
Raelene Boyle [00:01:40] I've just celebrated 24 years.
Kellie Curtain [00:01:44] So do you still celebrate milestones of being 24 years clear?
Raelene Boyle [00:01:51] Very much, I think. I like to believe that I celebrate every day being alive for another day. I certainly do celebrate the annual. Date 4th of March, and there are days when celebration. It can't be the right word because there are the black days where you go, Oh my God, am I lucky? Was the diagnosis wrong? And it wasn't as bad as I thought? Am I just one of those people who secondaries decided they weren't going to hit? I don't know. And I have those black days and the guilt days where I've seen so many women through this organisation, beautiful women who have done so much. And these people have gone. And they did so much for so many. And even the women alive today. These guys did so much back when they were alive to help us all today survive and the newly diagnosed get medications. And it goes on and on. But those black days are pretty tough.
Kellie Curtain [00:03:03] So we often talk about survivor guilt. So that's constant?
Raelene Boyle [00:03:09] Yeah, I guess that's what it is. Cause I, in many ways, with the life that I've had in sport and the life that I've had, which has been pretty different, special. or whatever you want to call it. I feel a bit of a cheat. I sort of think if I could have exchanged places with them, I would have.
Kellie Curtain [00:03:46] It's a big call. Do you remember? So it's 24 years ago. Do you still remember that day of diagnosis?
Raelene Boyle [00:03:54] I do. I went in and had a lumpectomy and they while are in there they found spots that they took a biopsy of. And I got a phone call the next day I was told it was going to be probably a week or four or five days before I had any results returned to me. And the very next morning I got a phone call to say, Mr. Collins wants to see you today. And I said, but I'm busy today. I'm I've taken the day off work and I'm going to the launch of the store gift. Nothing was registering. And eventually the penny dropped and it was just I was useless. Fortunately, I had a friend with me who organised the time to go and see Mr. Collins and ran me around all day. I still got to the launch of the store gift and I had a few champagnes before I went to see Mr. Collins. When I got into his office, I had two friends with me. And I was mumbling mess; I was useless. Once again, it was because I thought it was out of control. I didn't know how to tackle we seeing. I didn't understand it. And always being told things, without an explanation as such. You know, you will be at the hospital at X time on Friday to have surgery. You will have MRIs before that, you will have this test and that tests. But no one was giving, as an athlete, you're given, you know, the bottom line. You know, you go out and you run this far and your achievements in a major race are because you've done that and the package goes together a lot better.
Kellie Curtain [00:05:28] Yeah, all the dots join.
Raelene Boyle [00:05:29] Yeah. But with this stuff, I was given nothing much uncertainty, absolute uncertainty. And that's where I go to the control. I was out of control. I didn't have charge of that part of my life. And that scared the hell out of me.
Kellie Curtain [00:05:43] How important was it to have those to support people?
Raelene Boyle [00:05:47] They're all vital. Vital. I really wouldn't have been able to get through that appointment with him. I would have been I wouldn't have taken anything in. And really, I left the room and they organised it. They were the ones who got all of the dates and all of the times and all of those things I had to do. And basically between them, they ran me around to all the appointments in that five days and it was without them, I would have been totally lost. And as it was, I went into this "gaga" world, I call it. But it was like. I don't know, there was like a sheet had come over me, I was not thinking straight. I was not seeing straight. I was yeah. I couldn't get it together.
Kellie Curtain [00:06:36] Were you feeling optimistic, or?
Raelene Boyle [00:06:39] No; I was feeling shit scared and I hadn't sort of begun to move towards an optimistic level. And particularly as he told me, it wasn't a cancer in the first instance, the doctor, and then the next day he tells me it is a cancer. And then he tells me, well, you won't have to do any more treatment. We'll just go in and clear the margins. And three days after that, he came back to me and said, well, it was a 25 per cent spread into the lymph nodes, but we did get clear margins and you've got to start your chemo once the surgery has healed. And I'm thinking, hang on. You told me I wasn't, basically, I wasn't going to be doing anything like that. So I did go into a terrible state of shock and quite a quite a deep depression, actually.
Kellie Curtain [00:07:28] Which is not uncommon. How did you work through that?
Raelene Boyle [00:07:32] Well, once I stopped falling from the cliff I was on, I. I just had to get my shit together. And what I did was I tried not to think too far ahead and so I got the processes going of I had two weeks on chemo and two weeks off and I just had to, I dunno, go as smoothly as I could through it with all of the tests that go with the before you start chemo again. And I tried to work. And fortunately, I was working in horticulture for Prahan Council. And the people, the powers that be there were very good to me. They were very good to me. And they just told me as long as I was honest with them, they would look after me, which they did. And as it turned out, the CEO at the time became the CEO of the city of Sydney. So my employment went from Prahan to Sydney basically before the Olympics in 2000. But it was a very dire time and it was once again and was so hard because I lost charge of what was going on.
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Kellie Curtain [00:08:54] How do you pull yourself out of the darkness when you say you had to get your shit together? But how do you recall actually doing that? Because it's it's not easy to do.
Raelene Boyle [00:09:05] No it's not easy to do. And I've just gone through some more dark days. I you know, it's a pretty... as someone said to me, one of the psychologists I go to, she said, Raelene, it's just you. Anyone around you has just got to accept the fact that you will have good days and bad days. And, you know, you might not have a bad day for years. And then something will trigger something and you'll go into a hole again. And they've just slowly got to let you come out of it your way. And that might be taking the dog to the beach and walking or catching up with somebody I like under my terms. So, you know, when I call, it's time out. It's time out. Being flooded by people calling in to see how I am is the worst thing that can happen to me. I've usually got a protector that will be able to chase them away. It's basically the simple things looking around my life to see how blessed I am, how lucky I am. I have a lovely home. I have no debt. I have my beautiful dog, I have a nice partner, I've got a pretty good life. And once I can get my head around thinking about that rather than the dark stuff, I slowly come out of it.
Kellie Curtain [00:10:21] So they're the tough times. Do you remember the feeling you had once the treatment had stopped. Was it happy, was it lost?
Raelene Boyle [00:10:35] Well, that's another interesting time, too, for us people who have had cancer and gone through chemo and radiation. The chemo was interesting because, you know, I ended up doing seven months of chemo. It's a long period of time. And to be truthful, the last couple of days of tablets, because I would have an infusion on two Mondays in a row and I'd take chemo tablets for two weeks. So those last couple of days of taking the tablets were in the back of my mind. I'm thinking, I know these are gonna make me feel lousy. Are they going to make a difference in the big picture? If I just leave them, will anyone know that I haven't taken them? I made myself, it's like a training program. You have to do it all to make it work. So I took them all. But I did go into a pretty deep depression again after I finished them. It was like falling off a cliff, literally falling off a cliff because it was like, well, what now?
Kellie Curtain [00:11:36] More uncertainty?
Raelene Boyle [00:11:37] Yeah, more uncertainty. What is going to keep me alive now? And I was desperate to live. I was 44. I was young. I spent half my life running. And I wanted to live and do a lot of things. But it was a really tough time looking at those bloody pills. I can remember sitting at the kitchen bench and thinking, is that going to make a difference or isn't it?
Kellie Curtain [00:11:59] Well, it's a good thing that you followed through!
Raelene Boyle [00:12:02] Maybe, maybe they made a difference, maybe they didn't, but I'm still here.
Kellie Curtain [00:12:06] What about other people's attitudes? Did you feel a little bit? Well, not neglected by any thought, but quite often when people finish their treatment, it is that 'what now?' And everybody almost gets back to their own life.
Raelene Boyle [00:12:24] Yeah, I can remember my brother saying to me, particularly my younger brother, Well, you finished it now. Get over it. It's like, mate, I'm not going to get over this for the rest of my life. You know, it's like I'm winning an Olympic medal. You've always won that medal. It's with you for life. I didn't want cancer. And when I got it, I knew it was gonna be with me for life because people come up to me every day and talk about it. Where I live in a little place called Buderim, there's always someone who comes up, they mightn't say, how's your breast cancer? But they say, how are you? And stare me in the eyes, as if to say, well, you're either gonna tell me you're dying or you're not. It's with you for life. And that's something you have to manage. But you can turn that around and go, well, the wonderful experiences I've had out of breast cancer, as I've said, the wonderful people I've met, the places I've been, watching this organisation, Breast Cancer Network, grow and experience, as some of you know, experiencing the highs we've had. We've had wonderful, wonderful highs. And I've been here since Lyn Swinburne and and Gil were the only people in the office. They were the two that were doing it. Gil was Lyn's backup. There was absolutely no money. They were doing it for free up in the Bakers Delight office, one office, and then they, you know, had to start expanding and and it just became bigger than Ben Hur really. And watching that and watching the changes in the attitude of the government and especially having a targeted organisation like this that is basically there to represent the individual with breast cancer and to make sure that the drugs and the MRIs and PET scans and all of those things are available to our women who need them, has been fantastic. And one probably one of the most special highs was my 50th birthday, which, you know, we had a small group of eleven hundred people at Crown Casino to celebrate with, including the prime minister. And that poor bugger was sat between Lyn Swinburne and myself. And the target of that particular event was to get Herceptin passed on to the PBS. And we didn't exactly get that, but we got it passed on to another area that John Howard created for it. And it was a significant drug and a lot of women were paying seventy eighty thousand to have it. And today, you know, 24 years later, not quite 24 years later, but a longtime later, it is still a very significant drug. And that was one of the highest achievements that I felt that at that stage we'd been able to achieve.
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Kellie Curtain [00:15:19] So with your diagnosis 24 years ago, BCNA wasn't around then. What do you think BCNA is now, to women who do have breast cancer?
Raelene Boyle [00:15:34] Look, I think to a certain degree, the nurses and the doctors take BCNA for granted because we've been around for 21 years or so now. But back before that, when I was diagnosed, there was just nothing. There was no help and also a lot of the women back then, which probably was part of how you live, back then, you didn't talk about having it. It was all very quiet. It was very silent. It was, you know, close to your chest, so to speak.
Kellie Curtain [00:16:04] And did you feel that way, too? Did you keep it close to your chest? Because you're a pretty open book.
Raelene Boyle [00:16:09] It was a little bit hard in my position to do that. My mother was actually very ill when I was diagnosed. She was dying of oesophageal cancer. And I had to keep my situation quiet because she didn't need to know that I was sick. And so I sold the story to Women's Weekly and 60 Minutes. So my story wasn't going to be kept close to my chest. It was going to be out in the open eventually. And that was going to mean that a lot more people would stop and say things to me like, I know how you feel. And on some occasions, those people, women did know how I felt. But quite often they'd be people who had no bloody idea because they'd never had a cancer. And they would they would say, oh, I know how you feel. You'll be right. And you go, hang on, what have you had? And they go nothing. So you have got no idea how I feel.
Kellie Curtain [00:17:03] I think that's why BCNA's online network is so powerful and important for our members, because that is a safe place where people can go and share with people who know how they feel.
Raelene Boyle [00:17:21] And it's not only that, it can, it's a great place for remote women to go who are all alone and they can go to the online situation cause I'm so good with computers, they can go to our online groups and have relationships with people about their breast cancer without anyone really knowing them. But it also stops them from feeling alone. You know, they can pour out their hearts. And what we've found with that is a lot of people do it at night. You know, you can't sleep. God, how many sleepless nights have I had over the years. I'm just a little trigger like, you know, somebody that you know. And let's face it, in this organisation, being around so long, over the years, there's been a lot of women that we love and who have done great things that have passed away. And really, I can't sleep for weeks at night.
Kellie Curtain [00:18:21] So it is it it's always a trigger for you?
Raelene Boyle [00:18:23] Oh, yeah, yeah. That brings it into a dark spot for me. Fortunately, I'm very good at sleeping through the day, but yeah, there are triggers that, you know, I'm sure for women with children, I don't have children, but I'm sure if a woman with children would be looking at them and going, I want to see you finish school or I want to see you get married or I want to see you have your family. And at night is the time when you start thinking.
Kellie Curtain [00:18:49] When the house is quiet and the brain goes a million miles an hour?
Raelene Boyle [00:18:53] Absolutely. And that's when most of us, if we have dark moments, are going to get dark.
Kellie Curtain [00:19:01] Exercise has been the other core part of your life. Have you turned to that to help your mental health?
Raelene Boyle [00:19:08] Yes. I was pretty disappointed with how big I became after the treatment, which isn't uncommon. And not that I've lost weight, but certainly over the different stages, when I've been well enough, I've exercised and I always try to walk in the morning with the dog for about an hour. And just in the last six months, I've employed a personal trainer and I go to him three times a week. And I can feel change, it's not size change, it's just shape change.
Kellie Curtain [00:19:41] What about mental change?
Raelene Boyle [00:19:42] Mental change, because to be truthful, when I go to the gym, I get away from all of the other rubbish in my life. And Mike, my trainer and I, we just get into what we're doing and have the best time. And that's what we're thinking about. Have a laugh. And, you know, how weak are you today? And all sorts of things are thrown at me. But it's been very good for my head. I really do believe in the positive endorphins that are stimulated from exercise. And even if it's only a little bit mowing the lawns. I feel like I've exercised and I feel better about myself.
Kellie Curtain [00:20:17] So how would you sum up your your 20 years with BCNA and and you're still on the board. Why do you keep going?
Raelene Boyle [00:20:28] I believe my role these days on the board is to keep everyone grounded and remember that what we're about are the women that are diagnosed today, tomorrow or in the year and over the last whatever number of years. When I was diagnosed, it was seven and a half thousand women diagnosed a year, and about two and a half of those lost their battle. Now it's over 20000. And the numbers of deaths is still about the set, two and a half thousand. And we've become more involved with the fact that men get it, 150 or so a year. I think it's my role as I said I think my role is very important because when we get carried away with all of the other stuff that you can get carried away within an organisation like this, I like to bring it back to the fact we're about the women. So any decisions we have to make, let's think about how it's going to affect the women and the blokes who were diagnosed with breast cancer.
Kellie Curtain [00:21:25] You must be proud though?
Raelene Boyle [00:21:27] I've had the most wonderful years on this board. It's actually made being diagnosed with breast cancer a worthwhile challenge for me. Because I feel like all those years of running and the name that I that I was able to create out of that has been put to good use by being involved with this organisation.
Kellie Curtain [00:21:48] Well, you deserve a medal for that Raels, if we had one.
Raelene Boyle [00:21:50] Haven't got a chest anymore. No, I have got a chest, don't get me wrong! But medals are just temporary nothings. I think creating and being a part of this organisation are permanent somethings.
Kellie Curtain [00:22:05] Thank you for everything you do for BCNA and for joining us on Upfront.
Raelene Boyle [00:22:11] Thanks Kellie.
Kellie Curtain [00:22:12] And this episode has been produced with thanks to Cancer Australia. Don't forget, BCNA's online network is a wonderful way to connect with others. You'll find how to join on our website BCNA dot org dot AU. For any individual concerns, please contact your health professional. Until next time. I'm Kellie Curtain. Thanks for being Upfront with us.