Thriving Through Cancer with Dr Jodie Fleming

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Ellen:     My guest today once specialized in psycho-oncology, just the human side of cancer. And in 2010, at the age of 37, she received the terrifying news that she had not one but two primary breast cancers. This became, for her, a frightening opportunity to practice what she preaches. The practitioner became the patient. Doctor Jodie Fleming has recounted her story in a touching memoir, A Hole in My Genes, which is G-E-N-E-S, because we're an audio medium here, so we need to explain it's not the jeans you wear, but G-E-N-E-S, published last month. And she's here to talk to us about the book, her story, what she's learned about living with a cancer diagnosis as both a psychologist and a survivor.

Ellen:     Welcome Jodie.

Jodie:    Thank you so much for having me, Ellen.

Ellen:     I have just finished your book. I've been [crosstalk 00:01:29] over the last few days. I called it a touching memoir because it really is. I cried.

Jodie:    Sorry.

Ellen:     I cried.

Jodie:    Did you laugh as well?

Ellen:     But it wasn't sad. There's nothing sad in this story. It's harrowing at times. I've had many a moment over the last couple of days where I've gone, "I have no idea how she coped," but I'm gonna ask you about that. But you've written it in such a lovely, light, almost ... I don't wanna say humorous way. It's not humorous but it's light, it's engaging, it's storytelling, and it's really beautifully written.

Jodie:    Well they're some of my favorite compliments actually. I love that you didn't find it sad. I love that it moves people. But I'm one of those people that it would absolutely terrify me to think that anybody would feel pity for me for anything that's happened in my life, and so the fact that somebody can read my story and not feel sorry for me, not read it as this woe is me tale, is sort of the biggest compliment I can receive, because I certainly don't feel that way about myself or the story.

Ellen:     That absolutely came through for me. At no point did ... I mean I sort of felt sorry for you only because it was like how many more things can this poor woman take in moments. But the story itself is ... It's amazing. I was amazed. I was amazed at you but your resilience and really the strength of the human spirit I think, it was probably a big part of the thing. And lots of other things that I'm gonna ask you about in a moment.

Jodie:    [inaudible 00:03:23].

Ellen:     Before I do, where did you start your career in psychology? Let's get a bit of this background as a professional out of the way before we get into the story part.

Jodie:    It's a little bit of a long tale in that it stretched over probably 10 years. I remember being at high school asking myself what do I want to do with the rest of my life? Am I going to university? What will I study? This sounds very pathetic, but I was watching a movie, I reckon in about year 10 or 11, and it was Tin Cup, [inaudible 00:04:01], I think a Kevin Costner film, and it had Renee Russo as a clinical psychologist in that film. He was a golfer. He ended up engaging her services, and she was sitting at her desk, wearing a set of pearls. And I thought to myself after watching that movie, "Oh, maybe I'll be a psychologist, that looks pretty good."

Jodie:    But by the time I got to year 12, I narrowed down that I knew I wanted to work in a career where I had a sense of reward every day, after every day, where I got to work with different people every day, because I thought sitting in an office seeing the same old people every day would just drive me batty. There was a third criteria which I can't remember anymore. But anyway, that led to the whole psychology part. And then I was a very naughty girl in year 12 and I had a lot of fun with my friends and boyfriend and didn't really study, so I didn't get into the course that I wanted to get into. And I went on to do a few other different kinds of things.

Jodie:    Myotherapy was the first thing, that was a three-year course in Melbourne. One of our placements was at Fairfield, I think it was a rehabilitation hospital, and we went into essentially massage some of the patients in there. One of the wards was full of people still living in iron lungs, like this is in the early '90s, and their poor bodies were just so stiff and sore, so we tried to warm up their little muscles and give them some sort of reprieve I guess from how it must've felt to lie like that all day. There were two other big departments in that hospital, and one was the cancer department and one was dedicated to HIV/AIDS. At that point, that idea of working in the field of cancer really ... The seed was planted and it was something that struck me as something very meaningful to do with my life.

Jodie:    So I went on for the next ... I think it was maybe 10 years doing all sorts of other things, including living overseas, and while I was living in Spain, I decided I might start studying by distance and discovered that I could get into psychology as a mature age student. So I started my undergrad while I was living overseas, always, always with the intention of getting into psycho-oncology. Every essay that I chose to write had that theme. My thesis for my honors and masters or doctorate finally all had that theme around psycho-oncology, and I was just pretty well hellbent on doing that. That's what came to pass initially.

Ellen:     What do you think it was that really drew you to the field of oncology and cancer, because for most people, I can imagine that would be quite a scary thing, there would be a lot of resistance to exploring that, and yet there was obviously something there that drew you in a way that you did pursue it through all of those research areas and-

Jodie:    Back then, even like in the '90s, probably receiving a cancer diagnosis was the equivalent of a death sentence, which isn't the case now. But I think it was that sense of reward that I was chasing, and so if we're going to help other people at difficult stages of their life, I think my reasoning was, well what greater challenge than facing death, facing your mortality? So I think I sort of thought maybe I would get my biggest bang for my buck diving into the hard stuff. And those real, raw human experiences and vulnerabilities have always been of interest to me, so it sort of made sense from that perspective that I'd choose cancer. Interestingly enough, it turns out I was just doing research.

Ellen:     Which leads me to my next question, because your next I suppose exposure from a different perspective to the cancer journey, if we wanna use that phrase, your former husband was diagnosed with cancer, and you supported him through that challenge or battle, there's so many kind of clichés that come to mind when we're having this conversation. What did you learn from that as a psychologist who already had some exposure and experience with helping people?

Jodie:    Well I hadn't quite yet. He and I went to high school together, he was one of my friendship circle, but we hadn't seen each other for 13 years, and so when we met the second time, I was probably doing fourth year I think, and he had come home from New South Wales. He'd just had his diagnosis and initial surgery, and we met again, and that's when the sparks flew and the relationship started. So, I'd already started this path, and I almost ... I didn't really, but saw this as wow, look at this awesome opportunity to get an almost first-hand experience. Well definitely first-hand experience as somebody's support person or carer while he was going through quite horrendous chemotherapy and more surgeries and things for testicular cancer.

Jodie:    I think at that time it just added to my ... It fueled my fire, my fire in my belly that this was really what I wanted to do. I guess it exposed me to the emotional rollercoaster that comes along with receiving such a diagnosis, and all of the survivorship issues that came afterward as well. It was sort of happening hand in hand as I was heading into my doctorate training. It gave me really great insight, but still not as much as I would've thought. But that was to come obviously.

Ellen:     I mean interesting that it kind of ... It confirmed your career choice perhaps, it gave you that little bit of extra insight, but then of course, what happened next?

Jodie:    It was eight years after his cancer diagnosis that I received mine, but in the meantime, I'd finished my studies and had started working at a children's cancer hospital, sort of specializing in that area in private practice. So I'd met quite a few young women in private practice who were diagnosed with breast cancer. That led to a bit of hyper vigilance in myself, going to the doctor fairly frequently, finding lumps and bumps, only to obviously be told, "You're too young, there's no family history." My GP was kind enough to send me once every six months for an ultrasound, just for peace of mind, but that ultimately ended up being just so anxiety provoking, and it always ended up being nothing or a cyst or something like that.

Jodie:    I stopped checking for a couple of years until one random day when I did find another lump accidentally, and was going to the doctor with a broken foot, and just sort of casually at the end of that consult said, "Oh, would you mind just having a little feel of this lump?" And then that started that ball rolling, and that lump ended up being my first breast cancer diagnosis.

Ellen:     That anxiety is ... I mean I think it's probably an anxiety that we all feel at some level, because we know of the need to be aware, to check. These messages. Breast cancer is one of the more commonly discussed perhaps forms of cancer, one of the most prevalent forms of cancer for women. We have cricket pitches covered in pink. There's a lot of education-

Jodie:    [crosstalk 00:12:22].

Ellen:     Yes, but that does increase our anxiety levels, and I have to admit that even while I was reading your book, I was starting to feel anxious about myself. When did I last check? Should I be checking? I've had scares in the past. Do I need to go back in? All of that is constantly [crosstalk 00:12:39]. I can only imagine that yeah, what drove that vigilance for you or that hyper vigilance and then-

Jodie:    These women who were my age and it's happening to them, and so yes, it was a very real possibility, and in my face a little bit more. You would know yourself, working in psychology, we get a bit of a skewed perception I think about how often things are happening for people because of who we're talking to and the stories we're hearing. So that certainly distorted my perception. But then maybe that was a good thing, because ultimately, I would probably not have been checking and therefore not following up, and early intervention saves lives. But that death anxiety is ... I've read a lot about that since, and I think a lot about that, and I see that in the majority of the clients, and most anxieties can relate indirectly back to a death anxiety, so it makes sense.

Jodie:    But even going through my own experience, and the people in my inner circle that were so confronted by that close degree of separation, me getting cancer, so much so that that ended friendships in some cases because they couldn't deal with how confronting that was. It's a really interesting phenomena, I think.

Ellen:     Yeah, fascinating. Even the term death anxiety, that is confronting in itself, isn't it?

Jodie:    I know. I've just thrown that out there, death anxiety.

Ellen:     I mean I completely understand ... Well I probably don't completely understand in any intricate way, certainly not from a psychological point of view, but reading that phrase in your book about death anxiety, it's like well okay, yeah, we're all a bit afraid of death, but how much of that drives how we behave in life?

Jodie:    Well if you've ever read any of ... I think it's [inaudible 00:14:43] work on death anxiety, it's just fascinating, and to listen to him talk about it and relate it back to our very survival and that primal need for survival and fight and flight and all of those things, it's really quite fascinating. Once you've had a little bit of a read about that, you start to see it everywhere, you can make those connections.

Ellen:     You said for you that that actually did end friendships because people found that level of anxiety, that immediate confrontation I guess of death and their own mortality and the mortality of the people around them. You and I can say, "Oh, it's so fascinating, it's so interesting."

Jodie:    [crosstalk 00:15:30].

Ellen:     And do all the reading, but obviously for some people it is beyond their immediate capacity to cope.

Jodie:    Absolutely, yeah. And we all cope differently. You said at the beginning about reading my book and it's not a sad necessarily heavily read, but that ... I just count myself lucky as someone who sort of can adapt to adversity and use approach coping fine. I didn't cope well all the time obviously. There were ups and downs in my coping. At the book launch, we had this wonderful event where my oncologist agreed to sit on a couch with me at the front of a massive theater full of 500 plus people, and we sort of did a you can't ask that kind of interview with one another. In that, she told me how she didn't think I coped at all, and you should've seen my surprise. "What do you mean, you don't think I coped? I'm a psychologist, of course I coped well." And of course, I didn't cope well, and I couldn't be my own psychologist.

Jodie:    I think the thing I did well was I was able to reflect on it and grow from it quite well after I stopped being the deer in the headlights, but possibly not during.

Ellen:     Well it is one of those I suppose questions that we often ask ourselves or I know ask myself on occasion, is if something really critical, serious, traumatic, whatever it might be, happened to me, how would I cope? We like to think that we know how we'd cope.

Jodie:    We don't know.

Ellen:     But no, we don't know til we ... In a positive way, and perhaps sometimes in a not so positive way.

Jodie:    Oh, totally, yeah. I mean I learnt a lot about myself and my level of resilience. It's something that I continue to try to tap into now in everyday life, like nine years down the track. More often than not when something difficult happens I'll compare it to chemotherapy. "Okay, you did chemotherapy, I think you can handle this. Rightio." And so I do the thing that I don't wanna do or .... But yeah, how else do we know? I don't know.

Ellen:     No. I'm gonna ask you shortly about resilience, but I suppose that is part of the test of resilience, isn't it, that it's only when we're actually confronted with these situations that we can learn and discover what we're made of. I did find that interesting, alluding to that point you made about not knowing what, or being able to reflect on chemotherapy as a challenge and then use that as a perspective I suppose for facing other challenges, because I know you talk about at the end of your treatment doing some personal training at a gym and going along and feeling still unwell, lacking in energy, not looking like you wanna look, not looking like you think somebody who goes to the gym should look like. But then using that reframing technique of, "I've got through chemo, then I get through a personal training session."

Jodie:    Yeah, absolutely. It's gotten me out of bed, it's gotten me running, it's gotten me swimming in the ocean, it's gotten me facing a lot of things that I probably wouldn't have had I not have had this experience. I'm one of those annoying people that really sees that, the whole cancer experience, as a real gift for me. I talk about in the book ... Well the first client I ever had, who was diagnosed with breast cancer, and she said to me ... She only lived 10 months after her diagnosis, and she said to me at the end ... I saw her probably two days before she died, and she said at that appointment, "I would rather have lived my life the way I have for the last 10 months than have lived until I was 80 living the way I had before."

Jodie:    These are the people that really taught me how to get through this, and I completely concur with her perspective on that, and that's certainly how I feel about the way I live life now. [inaudible 00:20:08] how I ever would've planned it going, but at the same time, I can take the riches and the benefits of that, even though it didn't work out the way I thought it would.

Ellen:     Let's backtrack a little bit, and we'll fill in some of the gaps in the story without giving too much away because I want people to read the book, it is amazing. You were diagnosed with two different forms of breast cancer, one in each breast, at approximately the same time, is that right?

Jodie:    Yes. I had the initial surgery, and while I was waiting for the follow-up appointment with the surgeon, I had found another lump in the right breast. The first one was in the left. So when I when I went to the follow-up appointment, I said I've found another lump on this side, and he of course said, "Look, it's very normal that you're going to be hyper vigilant given what you've just been through, but let's send you for an ultrasound, and have that checked out." I went for the ultrasound, and of course ... Well the thing that I had felt was nothing, but they found something deeper in the breast that then ultimately ended up being another primary breast cancer, very different and unrelated to the first, but a real indicator that it was likely that I carried one of the breast cancer mutations, mutated genes.

Jodie:    Being a young woman, having two primary breast cancers within such a short space of time, was a real indicator that there was a genetic link. So that led us down that path as well, just to add some, I don't know. Because it wasn't chaotic enough.

Ellen:     That I think was what struck me. At that point in the book where I think you're going through ... You did six rounds of very intensive chemotherapy, so you're going through that process, you've got not one but two forms of cancer already identified, then you're in limbo for a while because there's concerns about it may be having spread to your liver, and so you've had to have tests and ultrasounds and things, and wait for results.

Jodie:    The waiting game is the worst thing. That's so awful, that time in between. And they're not allowed to tell you, they're not allowed to indicate to you whether it's good, bad or otherwise. And it's just excruciating, because of course the minute you get diagnosed with cancer in the first place you assume you're going to die, and then any other sign that something's not right, you just assume this is it. Because I knew all too well by that stage, by the time the liver stuff happened, that if it had spread, there was no cure for that.

Jodie:    The second breast cancer was what they call triple negative, so it didn't have any hormonal receptors that were related to it, which meant you couldn't have follow-up hormone therapy. Not hormone replacement therapy but a couple of extra tablets you can take afterwards if there's an estrogen or progesterone receptor attached to your cancer. One of mine was estrogen receptor positive, but the other one was triple negative, so that one is usually particularly aggressive and there's nothing else you can do. If that's going to recur, it usually happens quite quickly, in a couple of years. So there was a lot to think about and a lot to be fearful of, and that fear of death and fear of recurrence is really common and really intense early on, but with time that obviously gets better, which is really good news.

Ellen:     I had a sense of kind of this battle that you were having between trying to use your cognitive resources, your intellect and your brain to kind of rationalize it, reason and look at the logic, whilst also battling all of that more primal fear and anxiety there.

Jodie:    Very hard, very hard. I turned up to my first chemotherapy and I had my checklist, I had my support person and I had my pink cardigan and I had my Mandala cards to color in and I had my music and I had a movie. I had my chemotherapy friendly food. I thought, "I can do this, I know what to do to get through this," and then of course the wheels fell off immediately once the side effects started happening, which was like hours into the day. Really, I just did not cope then probably until midway through chemotherapy. That was when I decided, "Oh yeah, I remember, I'm a psychologist, and there might be some things that might be useful here," and that's when the real cognitive strategies came on, and even mindfulness practice became my best friend to get through nausea.

Jodie:    For half of it I didn't cope at all, and then the second half, I'd like to think that there were some things that were quite useful to help get through.

Ellen:     That little description that you have thereof when you're facing that intense nausea and you suddenly ... It's like the little light bulb goes off to say, "Oh hang on, mindfulness," and I think you talk about listening ... Was it listening to a song or there was a song came on the radio or a song popped into your head that took you back to a very [inaudible 00:26:05] moment.

Jodie:    I'd been teaching mindfulness as we all had after our ACT training, probably, I don't know, maybe for a few months, even a year, and then ended up at a Matchbox 20 concert outside in the Hunter Valley at a Vineyard and that night ... They're one of my favorite bands. That night the heavens opened and it was just downpour, we were saturated, we were all out in the rain, and the band came out in the rain with us and we all sang this song at the top of our lungs. And I just remember that we all took our ponchos off, we had that feeling of the rain on our skin. It was a barmy evening. The sounds of the song, the feel of being in that moment, truly in that moment. And I remember always going, "This is what mindfulness is. This is me being mindfully present." And I, from then on, could tap into that feeling whenever I wanted.

Jodie:    So that was the light bulb that went off that day. I had been so desperately trying to find ways to cope with the nausea, which was unrelenting for five whole days, and I just remember this day being so ... I almost ... Well, I did wanna give up. I just was lying there thinking I can't, I can't do this again, and then that-

Ellen:     [crosstalk 00:27:31] have to do it again and again.

Jodie:    You have to, you have to, yeah. What alternatives do you have? Everyone says to you, "Oh, you're so brave, you're so brave." There was nothing brave about that. You don't have an option, unless you want to die, which felt like a pretty good option most of the time, let me tell you. So yeah, that song popped into my head, and then that was when the penny dropped. "Ooh, okay, maybe I could try it with this, let's try that," and I did, and I just had the slightest reduction in the intensity of that nausea and it made all the difference. It was so good.

Ellen:     This is what struck me, and I know because ... It pales in comparison in terms of I think the physical experience, but I've practiced yoga for many years, and I know one of the things when you're being very mindful in a pose, which may be really uncomfortable, especially if you're doing yin yoga, you're holding these poses for quite a long time, and you can be really uncomfortable, and your brain starts to go, "Oh, you've gotta move. You can't do this, this hurts. Don't do it, stop doing it." And realizing that being mindful in that moment actually means accepting and almost immersing yourself in that pain. That's what you described with the nausea. Then I could make that connection. I was like, "Oh God, [inaudible 00:28:47] nauseous." You actually really almost felt the nausea more intensely in order to be able to cope with it, is that how it happened?

Jodie:    Yeah, absolutely. I'm not an ACT therapist by any stretch of the imagination, but it's that acceptance and willingness, which ... And I was doing the complete opposite all the other times, I was struggling with it, I was rejecting it, I hated it, I wanted it to stop, and all I was doing was adding to my stress about it and obviously increasing the intensity of that. The minute I just objectified it and observed it and sat with it, that was when I got the rewards. It was really valuable. Oh, sorry.

Ellen:     Sorry. I was gonna say there was a similar thing in terms of the acceptance around the whole cancer experience too. Getting to a point of stopping fighting, getting to the end ... Talk us through that. You'll do a much better job of describing it than I will.

Jodie:    I can't remember at what stage of the book I talk about that, but I think definitely ... Something you said at the beginning made me think of this as well, I can't remember what we were talking about, but cancer wasn't supposed to happen to me. Like we all have this belief that these bad things in life happen to everybody else or other people, and we're there to help them through. That's our role. So, I think I felt like I'd done all this preparation, I'd done seven years of study, and then my husband had cancer and surely that was enough, and then bang, there I was facing my own.

Jodie:    I remember Dave, who is my ex-husband, he said to me at the beginning that he always felt like when he was diagnosed, that you take your life and you hand it over to your oncologist or whoever and you give it to them for a year, and then you hope you get it back at the end. I pretty well felt like that was the case for me as well, so I'd handed over my life, and I think I just was in shock. I certainly wasn't in denial once chemo stared, but maybe a little bit before that, and then that I guess cognitive dissonance around that this doesn't happen to me. Oh, but this is happening to me. Who's that person in the mirror? Oh, that's me. Oh, that's right. A lot of the time obviously you still feel like yourself. I used to get shocked all the time walking past a window or a mirror or seeing people react to me in a very strange way, but of course they were doing that, "Oh, that poor cancer person" kind of thing.

Jodie:    So it did shock me for a long time, and then at some point I had to recognize and accept that this is what was happening in my life, and stop questioning why. Not that I spent too much time with the why me, but I guess the denial of ... That it was so significant and that it was happening. When I could, everything got a little bit more manageable I think. Less of a struggle.

Ellen:     I know when you were talking about others that you were still seeing and assisting, because you're still working full-time pretty much throughout this whole process, you're still with other cancer patients and helping them to manage their experience while going through it yourself, which when I say that out loud sounds kind of bonkers, but I can understand that ...

Jodie:    Well while I was having active treatment, I was referred one family, and the mom was a similar age to me, similar diagnosis, except she knew very soon, like soon into the piece, that hers had metastasized. I wasn't necessarily working with her, but her children. But then in a way, she and I formed a peer relationship because we were on the same chemo cycles, and I'd see her in the waiting room before I would see her children, and there'd always be that brief, "How'd you go with this cycle," to and fro. Then her cancer progressed, and mine went away, and it was sort of a sliding doors kind of scenario packed full of survivor guilt. It was quite a confronting kind of experience to have. She ultimately died I think three years after her diagnosis, and ... So to see how that could've gone, and really, it's sheer luck, isn't it, whether you get it or don't get it or die or don't die.

Jodie:    I can't remember what your question was, I don't [crosstalk 00:34:11]-

Ellen:     That's okay. But that notion of luck kind of struck me too, because there's ... You found out that you do carry the genetic mutation that makes breast cancer far more likely, and also associated ovarian cancer, so you and your sister and your dad went away and had the genetic counseling.

Jodie:    Yes, we did.

Ellen:     At that was to understand ... Well at that stage you didn't know, so you found out that you had the mutation, and then they wanted to find out as well whether or not they carried it.

Jodie:    We can't talk about the results of ... Because some family still don't want to know about that, and they're choosing not to read the book or ... And I try to get them not to listen to these interviews and things but they seem to like to listen to them for some reason. For me, I think it's one thing to have cancer, and then find out you carry the BRCA mutation, and it makes ... Actually, for me it was a relief, because then I had a cause, then I could understand why, and then I didn't have to worry about was it something I did? Is there something I should stop doing? A lot of the risk factors that related to me were around being childless and not having breastfed. I wanted to have children, and so that was a very difficult pill to swallow. So, to find out actually there was always going to be a super, super highly likely that I would get breast cancer was a really good thing for me.

Jodie:    But then to see my sister have to be confronted with the decision of if she also was positive, which she wasn't thank goodness, would she choose to have prophylactic surgery and cut off healthy body tissue, breasts? I just couldn't even fathom what that must be like, that decision, to have to make? Luckily, she didn't have to make it. But yeah, it was quite a harrowing experience for our family. My mom is one of those anxious people who did not want to know, so she didn't get tested. Just my dad did.

Jodie:    But also a beautiful ... Not beautiful but I dunno, just one of those opportunities where you as a family and your bond is just so solid and something that can never be ... I dunno. You go through something like that together and it really gets tested, and for us it was a really positive thing.

Ellen:     You mentioned that connection has been something that helped you enormously and something that you're passionate about as a psychologist. I know that really came through very strongly for me in the book, in part because within the text you have these lovely vignettes which are letters to your nan, who had passed away already several years prior to this point. With this, was this was a journal that you were keeping at the time and you sort of wrote in the form of these letters?

Jodie:    Yeah, absolutely. She and I were super close. She was always my confidante. She would've been the person I would've leaned on the most had she been around. I had moved back from New South Wales to our hometown where she had lived, and everything reminded me of her. I'd been given this beautiful journal as a gift, and I started writing letters to her, and that was my way of sort of processing the day to day ins and outs of what was happening in my life. It was really helpful actually to me.

Jodie:    At the end of active treatment and I was no longer writing as much, I really missed the writing process, and joined a writing class online, and was in there for three years, and the book sort of evolved from that and from those letters. So it made sense to me that they're actual excerpts I guess from the letters word for word that I wrote to her. She's so important to me. I don't know if my genetic stuff came from her, but I come from her, and just ... Yeah, I love those parts of the story. They were a nice way ... Like the journal writing, the letter writing to her, did allow me to feel connected to her. It allowed me to tap into memories very clearly where I felt like I knew what she would say, and I knew what she would do to make me or help me feel better. It was a really, really powerful coping tool for me.

Ellen:     Therapeutic. Well we know that there's lots of therapeutic benefits in writing things down but it was for me that connection to her, and as the reader, getting that little bit of insight into what was going in your mind, in a way that was less narration and more personal if that makes sense.

Jodie:    Yeah. Somebody asked me at one of the authors talks I did recently, "What would she have said about the book?" And I said, "She would've said that I swear too much. She would've said that I should not talk about my vagina so openly to strangers, and she would've probably had trouble verbalizing that she was proud, but I know that she would've been."

Ellen:     Which is lovely. And there's lots of other stories of connection in there. I mean all the way through, you just have this wonderful network of supporters, family, friends ... I think the part that made me tear up when I was reading it was actually you had friends coming down from New South Wales and you really wanted your sister and brother-in-law to put them up at their place because you were living with your parents. There was no way ... And you wanted it to be easy for friends to come and stay, but they sort of hadn't offered, and you were feeling frustrated, and you had this conversation with your sister. But then your brother-in-law approached you. What was it that he said or did?

Jodie:    Andy had lost his dad to prostate cancer years earlier, and he and his father had the kind of relationship that I had with my grandmother. And he came around the night I had spoken to my sister in tears, just saying ... It makes me a bit emotional thinking about it actually. Just saying how they had been in denial, they hadn't wanted to accept that I could die, and that he loved me as much as he loved his dad, and that of course they would let my friends stay. And everything changed from that point, it was really beautiful. But denial is such a massive coping tool, isn't it, and an effective one I guess, but not always the most helpful. So yeah, that was big.

Ellen:     For me it was I think realizing that, and maybe it's because as soon as you read you start to reflect on your own experience and your family and who you have and who your support networks are and how they'd respond. Really, that kind of welled up the tears for me, seeing that connection played out in such a ... Not an over the top way. A really simple but incredible endearing way. So, all of those connections, what is it ... How has that helped you now as a psychologist having that kind of deeper ... I mean we know logically; we know from all that training that human connection and social support's really important, but you've experienced it at a different level, from a really different perspective. How has that helped you as a psych?

Jodie:    Well it's certainly something that I check in on with everybody at their first appointment and in their initial assessment, but also throughout their sessions, depending if they're accessing that social support. Social support and quality of social support was one of the big aspects of my doctoral thesis as well, and so I was always acutely aware of how that was probably the single most important coping tool I needed. Good quality, not quantity, social support. It wasn't intentional that the book shows that so well, but it's my life, and well before cancer, that's how I cultivated my support network. I'm so lucky to have lived in many different locations, but to have performed very, very deep connections in each of those locations and maintained a lot of those friendships. So, it is something that I really, really I guess focus on in therapy with all of my clients.

Jodie:    I'm working two days a week now in a secondary college, and also when you couple that with the developmental stage for adolescence, [inaudible 00:44:06] the importance of that sense of belonging in connection, it's something I focus on even more now. It never ceases to amaze me that the minute somebody can feel less alone, less isolated, with something that they're going through, the miraculous healing that comes from sharing, having a shared experience. And that's the beauty of things like yoga classes. To share something on such a spiritual level with other people is just so healing and therapeutic.

Ellen:     And you had those opportunities with family and friends, but you also ... I mean you had opportunities for tears, but also opportunities for lots of laughter.

Jodie:    Oh yeah, loads. Always laughter, always black humor. That's something that, when I was learning about psycho-oncology, humor was always up there with the top coping tools, and it's so true. If we can laugh at ourselves, it makes life so much easier, absolutely.

Ellen:     What have you learnt about resilience? We sort of touched on this a little earlier, but this ... People will have to read the book to really appreciate the level ... Because there's other stuff going on in your life at the time as well, the breakdown of your marriage, coming to terms with your fertility, all of these sorts of things that are just layer upon layer on top of everything else. It's a test beyond my imagination really of your resilience, but you do keep your sense of humor, and you do maintain your relationships, and you do maintain your mental health. What have you learned about yourself in terms of your resilience?

Jodie:    Well I have learnt that I am resilient, that I am stronger than I ever knew. And bravery and strength don't meant that you are always able to show up and be fearless. I really learnt that what it means is that you feel that fear and you show up time and time again. I really learnt that when I thought I had nothing left I found it from somewhere, and that there ... Obviously there was nothing that was too much for me to handle. No matter what got thrown at me, I was able to stand up again and again and again. And it didn't matter how long I stayed down for, and it didn't matter that I felt completely vulnerable and afraid. But what mattered was that I did front up to face whatever that ... The new stress or challenge was, and there were so many.

Jodie:    I really think that survival instinct in us is very strong. I think as a species we are very resilient, and I think that's what got me into psychology in the first place. It's just so fascinating to me. I dunno, I'm just so proud of all of us, that we have that in us. It's a weird thing to say, but I really enjoy ... I'm reading Sapiens at the moment, have you read that?

Ellen:     I [inaudible 00:47:30].

Jodie:    Oh my gosh. I'm only like two chapters in, and I have to ... I read like two pages at a time, and I have to put it down, because it requires like four weeks of thinking about before you can move on. It's a brief history of humankind, and he just takes us right back to that real primal level of where we came from and why today we still have these hang-ups and fears that we do, but how our particular species, homosapien, came to survive when the other three kinds didn't. It's so ... I just love all of it. Human to human stuff for me just really drives me, I think.

Ellen:     A heap of learning. You talk about all those tests and the stresses that you had to face and that you did keep showing up, and sometimes that was as simple as just getting out of bed, wasn't it?

Jodie:    Yeah, for sure. Absolutely. Sometimes that was the hardest thing to do, to get out of bed.

Ellen:     And just start the day.

Jodie:    Yeah, exactly. Yeah.

Ellen:     Sorry, I'm just turning my page over while I come to the question, Andy can edit that bit out. Tips for people who are perhaps starting a cancer journey or starting supporting somebody who's had a recent diagnosis ... We're going to put all of these in the show notes, but can you just talk us through, what are the things for any of our listeners who might be facing some really scary stuff right now, what are the things that they can do to help and support someone?

Jodie:    To help and support somebody, I think people ask this question all the time. It's a really great question, because I think a lot of people fall into the trap of I don't know what to say, and so I say nothing, or this is so confronting, I'm afraid of upsetting the person, so I'll avoid them at all costs. But for the person with the cancer, they just see the absence of the person they thought would come and support them. It's a far, far better thing to turn up and say, "I don't know what to say," than to disappear on someone. It's also a much better thing to say, "Oh my God, this must suck completely," empathize with them. Not too hard to put yourself into somebody's shoes when they've been diagnosed with cancer, to realize that must be a really hard, awful thing. And to try to meet them on that level and empathize with them.

Jodie:    I think one of the things that probably ... I don't know that I experienced this too much, but you get people who offer, "Let me know. Let me know if I can do anything for you." Well, do you know what? Probably take that decision out of the person with cancer's hands, and just show up, and go, "Where's your ironing basket? Here's a casserole. I bought you some potato chips. I thought you might be feeling a bit nauseous. Here's a box set of DVDs, thought you might wanna watch these." Or, "Let's go for a walk, let's get you out of the house." Just show up.

Jodie:    One of my best friends was just so good. We had a walking date every Sunday, and we rarely talked about cancer. I just got to be normal Jodie. And that was a really valuable thing, and that's probably why I worked through chemo as well. I needed something in my life to have not changed. And I needed to have a meaning, and I needed to have purpose, and I needed to feel like I was still contributing to the world. They'd be my big tips for someone caring for someone with cancer.

Jodie:    If someone's been diagnosed with cancer, I think number one, I'd say expect all the feels. Like it's really normal. More often than not, I'm talking to people about how normal their emotional responses are very normal responses to an abnormal situation, rather than them feeling like there's something wrong with them or that they're going quote, unquote crazy. It's a bit of a rollercoaster, and there's loads of grief and loss and everything else as well. But that to sort of just try to go one step at a time. When you look at a whole year of treatment that's very overwhelming, whereas if you just look from one appointment to the next, it makes it a lot more doable to get through. [inaudible 00:52:28] use your social network. Like keep them around with you, because it's super important.

Ellen:     Now, without giving too much away, you are living life cancer-free.

Jodie:    I sure am.

Ellen:     You're fully, I dunno, is recovered the term? I don't know.

Jodie:    [inaudible 00:52:53].

Ellen:     You're working, but you're no longer working in psycho-oncology. What are you doing now?

Jodie:    Not really. Well I live in Warrnambool, and we have a lack of psychologists in our town, so you can't really afford to specialize here. You need to be fairly generalist. I still am involved. We have a beautiful survivorship program that runs quarterly through our base hospital, so I run the psychology sessions in those, and I love that, that is such a rewarding thing to do. I get the odd assessment for people with the BRCA mutations who are choosing to have prophylactic surgeries, and I get the odd referral with somebody who has been diagnosed with cancer, so I'm keeping my hand in that area, but it's not my all day, every day work.

Jodie:    I work two days in the secondary college, I work two days in a private hospital, St John's, and one day in private practice, so there's a bit of variety, which I love. But what I also love is that a lot of the psycho-oncology stuff just relates to any sort of chronic illness, but also just life and adversity, and everyone that walks through our door is facing some sort of adversity, and so those tools come in super handy. And when I'm able to try to teach somebody the power of mindfulness for example, and I'm able to say, "This is when I use that in my life," I feel like it motivates them a little bit more to go, "Oh, okay. If it can be used in such a thing, then maybe that can be useful for my life as well." So yeah, that's where I'm at.

Ellen:     Sharing those experiences to help others. As I said, it is strangely a very delightful book to read, even though it is such a seemingly difficult topic, but you do bring all of that to life, all of that, whether it's the mindfulness or the social connection or the resilience or the perspective taking or the humor, any of those sort of coping mechanisms that we've spoken about, without it ... It's not a textbook, it's a story. It's life, and that experience of those things and how it got you through, just written in this engaging, easy to read tale.

Jodie:    That's the whole idea. If one person can take one little thing from it and that helps them in some way, shape or form, then I've done my job. And that was the whole purpose of actually getting the book out there. It's a little bit of a hybrid memoir/ ... I dunno. The intention was to help others. It's not a self-help book, but I describe some of those coping tools in very step by step sort of ways so that anyone could employ them if they felt like they would be useful to them. So yeah [crosstalk 00:56:04].

Ellen:     I think it does that really, really well, and very easy to read. I got through it in a couple of days. For our listeners, it's called A Hole in My Genes, G-E-N-E-S, a memoir by Doctor Jodie Fleming. It is available through ...

Jodie:    Well all the major online bookstores. If you go to your local bookstore and ask them to get it in, they'll be able to order it from the distributor. It's not hard to get.

Ellen:     Well I currently have a hard copy that Jodie sent me, but I also did ... Prior to that I bought an online e-book copy, Kindle-type thing, so yes, I can vouch for the fact that it's very readily available.

Ellen:     The other thing that you have coming up, Jodie, is a retreat.

Jodie:    Oh yeah, my retreat, yes.

Ellen:     In May of this year in Bali. Can you just really quickly tell us a little bit about that, because that may be something that interests our listeners as well?

Jodie:    Yeah, for sure. Last year I went on my own retreat after experiencing a little bit of burnout from work, and I had to do a lot of work for myself to figure out how I was going to sustain this career in psychology. I read a book called The Desire Map, and I tell everyone about it because I just love it, it changed my life. But it asks you to explore how do you want to feel in your life? And it takes you through this process of figuring that out. At the end of that, I came up with my four core desired feelings, which were to feel connected, to feel as though I was flourishing, to feel serene, and also to feel purposeful. And so from that, I was figuring out well how can I do that? And the book, which had sat dormant for about three years, came back up, so I knew I had to do something with that, because it was a really powerful way of helping others and connecting quickly with a lot of people.

Jodie:    Then the retreat was another way that I was able to sort of ... I guess it's sort of like group therapy. This is a wellness holiday. There's yoga, daily yoga involved in it, but also my version ... Sorry, that's my dog knocking at the door.

Ellen:     That's okay.

Jodie:    How annoying, he'll keep doing that.

Jodie:    My version of how to get people out of their heads, get them back into their lives, but living those really feeling-based values. Sorry, is that really annoying, that door?

Ellen:     No, it's fine.

Jodie:    I've got daily workshops every day of the retreat, but also, there's a lot of holiday time and downtime. It's really for people to take that time out of their lives so they can do a quality of life checkup really, and hopefully feel quite motivated by the time they leave us to go and put some changes into place for their own lives. So I'm so excited for that.

Ellen:     It sounds wonderful. It's in May of this year.

Jodie:    May 4th til 10th in Bali. In Canggu and Ubud, we're in two locations. It's just about nourishing their bodies and their minds and their souls while we're all together having this joint experience. There's the social connection.

Ellen:     It sounds glorious, and we will put a link to that in the show notes for the episode, so that people can find out more. I'll also put a link to a couple of those books that you mentioned so The Desire Map and Sapiens.

Jodie:    Sapiens, definitely. And [inaudible 01:00:00] stuff, although most people won't wanna read about that. Oh, and my book. Yes please. Please buy my book.

Ellen:     And also your ... You have a website. It's The Psychology of It.

Jodie:    Yeah. That came about through missing the writing process, and having this desire to be sharing human experiences and to helping others feel less isolated with their own experiences. So the website came about well, three years ago now, and I'm just working on a new website, which is just dedicated to the writing and my book/future books. It's just called doctorjodiefleming.co.au, but that's under construction at the moment.

Ellen:     That'll be your author-

Jodie:    [inaudible 01:00:54] page, yes.

Ellen:     Jodie, thank you so much for your time and for sharing your story today. As I said, I really enjoyed the book. I've learnt so much. Even as a psychologist, I feel like I've learnt so much from reading it, so I encourage anybody who ... As you say, it doesn't have to be about cancer. It's about life, and it's about being resilient, it's about showing up, it's about coping with difficulties, it's about connection, it's about all the things that we've spoken about today. I really appreciate that you've put it out there, because as someone who has written in the past and does write, I know that that's a big endeavor.

Jodie:    [inaudible 01:01:37].

Ellen:     So excellent big tick for you for getting that part done. Best of luck with the retreat, because that also sounds glorious.

Jodie:    Thank you.

Ellen:     I'll let our listeners-

Jodie:    [crosstalk 01:01:51] a couple of spots left, and there'll be another one in the works for next year. Thank you so much for the opportunity to come and talk to you. It's helped me to discover your podcast, which I've been listening to while I'm making dinner and making beds and all sorts of things, and it's really informative, and I've been really enjoying it. I'm so happy to be a part of it now. Thank you.

Ellen:     Good, thank you.