Jodie Preiss: The importance of advocacy in the face of adversity

Today I bring you a chat with a very special friend of mine, Jodie Priest. Jodie has been through a lot in the last four years. A breast cancer diagnosis, surgeries and treatment, medically induced menopause, and the tragic and unexpected loss of a loved one. We talk about how she coped with all of that from a mental health aspect, emotionally and physically. I hope you enjoy our chat. 

Hey, Jody. And welcome to dear menopause. How are you today?

[01:24] Jodie: I'm so good, Sonya, and it's my absolute pleasure to be here.

[01:28] Sonya: Why don't you introduce yourself to the listeners, tell us a little bit about who you are and why you're here today.

[01:34] Jodie: I really dislike labels, but in describing myself, you know, I take on a lot of different hats. I'm a mother and a wife and a sister and a daughter and, you know, all of those things. But I'm also someone who is deeply passionate about being the best that you can be in the world, and I'm just kind of exploring that and have, in many ways, a similar journey to you in some challenges, health wise, that have sent me into or did send me into a medical menopause. And so just looking forward to sharing my story and hope that, like you, it can help someone who's on that journey who may be struggling with it.

[02:22] Sonya: Yeah, amazing. And I'm so grateful for your time today and trusting me with sharing your story now. I'll give our listeners a little bit of context as well. So you and I have actually been friends for quite some time. You were one of the first people that I reached out to when I decided that I was going to bring dead menopause out into the world, because we do share very, very similar stories and we knew each other before those stories unfolded for both of us. And it's been interesting. You're in Melbourne, I'm in Sydney. We don't get to see each other often. We keep connected by social media and what have you. But our trajectories through life have been very similar in some ways, but also very different in others. And I think it's going to be such an awesome opportunity for anyone listening today to hear us talk about the medically and just menopause, but also everything else that you have gone through as well, from your experience. So where would you like to start? What would you like to kind of kick us off with?

[03:23] Jodie: You know, maybe we start at the year that was for me, that took me into everything. So, like you, I had a breast cancer diagnosis. Mine was, I think, twelve months or so after your mine was in 2018.

[03:40] Sonya: Yeah, that sounds right.

[03:43] Jodie: And mine came really close on the heels of my brother's suicide. So he suicided in January of 2018 and in March of that year, I was in the shower one day and my hands kind of glanced across what felt like an enormous lump in my left breast. Hadn't been there the day before and wasn't there the day after, so literally it was there and then it wasn't. So had a lot of pain for a few days, but the lump pretty much disappeared after I discovered it. Exactly. It was my lesson of how to trust my body, though. Yeah, because I took that fairly seriously. It would have been so easy to not when it had disappeared, but took that fairly seriously and went to my GP. That happened to be a Friday of a long weekend, so it was the Tuesday before I could see my GP, and literally there was no pain and definitely no sign of any lump by that stage. But she said, let's just get it checked out if you really want to. And I said, I really want to. And so we did, and I had a mammogram and an ultrasound and what eventually led to them a biopsy and a diagnosis at that point of DCIS, which is really considered a stage zero, I guess it was pre cancer ourselves, but it was quite a large area. So when I was referred to my breast surgeon, she said, I think it's pretty benign. It's nothing really major, but because it looks like it's a big area, let's have an MRI so that we can kind of see how large it is and whether we need to be doing a full mastectomy because we're losing so much of the breast or whatever. So I had an MRI and came back to her and she said, MRI has picked up breast cancer in your right breast. So literally, that is kind of I've been on this journey of tests and all sorts of things, and it was after that that she then said, yes, you've got breast cancer and you're right. *******, another biopsy of the other side, further testing to make sure, and yes, it was. And that kind of thing led me on that big journey of everything. So because it was in both ******* and because my left breast was quite a lot of tissue that they were going to remove, I had the choice of a single mastectomy plus a lumpectomy on the right side or a double mastectomy. So I was like, if I'm losing one, let's just take them both.

[06:53] Sonya: Yeah, absolutely.

[06:55] Jodie: So I literally went from my breast surgeon's office, where she told me that news, to the plastic surgeon's office because I already had the appointment with her anyway about my left breast. So all of a sudden she kind of on my drive between she got a phone call from my breast surgeon to say, you're not just talking about a single mastectomy, you're talking about a double now. And so we went through all of that and she talked about all of the options. My classic surgeon was amazing. I talked through all of the options with the reconstruction, and in the end I decided to do a deer of flat reconstruction. So that kind of happened then. I think it was May 2018. Yes.

[07:43] Sonya: So you were literally twelve months behind me because I was very end of April 2017, and everything for me unraveled in the May.

[07:53] Jodie: Yes. Okay. So, yeah, twelve months. And up until that point they had thought that would be it for me, that's all I needed to do. But we had discovered that there was actually something in my lymph nodes. So I recovered from that surgery, which is huge. A dear flap. I know you've had others on the podcast talk about it, but for those who haven't listened, it's pretty intensive surgery where stomach tissue is taken to reconstruct the breast. So it's kind of like a cesarean, but goes further. I have a scar from one hip to the other, basically across my lower abdomen. And so the recovery from that is pretty intense. I think I had drained bags for about three weeks, and then that within.

[08:53] Sonya: Itself is quite traumatic, and it's huge.

[08:57] Jodie: When they send you home. And there were two instances where I actually had to call the doctor on call to say there's something going on. And the second one was my drainage bag had blocked. And so I had I woke up. Not even woke up. I went to bed and went to roll over, and there was blood everywhere through the bed. It was horrendous. Anyway, so lots of good things going on there. Recovered from all of that. And because I still had that wound on, my stomach was taking a long time to heal, largely because of the drainage bags had been in for such a long time and all those things. I then had my treatment reversed. So rather than the heavy duty full on chemo, I did the taxi first and then the other, which I think was a blessing, because if I'd gone straight into heavy duty after six weeks of recovering from the other, I don't know what I would have done. I really advocate for that, actually, when I think about it, when I remember back, because the last day before I was starting my treatment, my oncologist said, oh, I think your skull is healing okay. I think it would be fine. And I literally said to him, my head is not healing. OK, I need to do it this way. This is what you've told me the whole way through. This is what I'm prepared for, this is how it needs to be.

[10:29] Sonya: Yeah, good on you. And actually, that was leading me to a question that I was actually that came to mind when we were talking was how was your mental health? Because as you've already mentioned, you were coming off the back of your brother's suicide and then you were faced with the diagnosis itself was quite traumatic. And then the treatment, your surgery was significant. How was your mental health and what was put in place to help you with your mental health?

[10:56] Jodie: Interesting question, Sonya. I wasn't in a good place, but I also know that when I was then diagnosed, I kind of had to very much compartmentalize everything. And so everything that I'd been working through with my brother kind of I always said I felt like I put it in a box and put the lid on and put it to the back of my mind because I couldn't go there anymore. And just then was processing everything that was happening. It was really hard to process everything that was happening to me because of what had been going on. And I remember the day that I'd first heard from the doctor, my GP, that it was DCIS before I even saw the breast surgeon or anything. And I remember I came home and called my auntie, who had been an absolute rock in the weeks beforehand, and she said to me, Is everything okay? And I broke down and I said, I had a mammogram last week and that's all I could say. And she's like, a holy ****. And so I had support of people. What was really disappointing was, despite the fact that all of my doctors knew my story, I had to actually ask for a mental health plan. And even when I then did, and that was great, I went to see a psychologist that I'd seen previously. There were times during treatment when I wasn't in a good place at all. And I think we've had a conversation about this. There was at least one time when my GP actually said to me, I think you need to go on an antidepressant. And I said, I'm dealing with a whole heap of stuff here, I don't need to mask that, I need to actually work through it. But her answer was, rather than processing it all in this way to actually just try and medicate it, and I got really frustrated with that. I'm a very big believer in stuff like, absolutely there are some people who need to have antidepressants and I would have if I felt I needed to. I also knew I needed to be very fully aware and able to process everything in the moment.

[13:36] Sonya: And huge kudos to you, even though you were in a pretty fragile place. You had the fortitude and the resilience to advocate for yourself and to, like you say, you said earlier, to know what you wanted, know what was right for your body and to push for that to be what led the conversations.

[14:02] Jodie: Yeah. And I think it's a hard thing sometimes doctors can tell you that they know best, and she definitely tried that. And that was kind of way further on in my treatment, where when I went on to the heavier duty chemo, I had terrible headaches from day one. That went on for three months and eventually ended up with vertigo. And Timothys from it. And so I think I'd gone into her office one day with this headache that wouldn't go away, and so I was teary and that's when she said, I think you need this and I just need these headaches to go away. That's what I need and I need to process it. And it was actually then part of that, especially when the tiniest and vertigo came, I kind of had that second bit of my body can't take any of this anymore, this is enough. I think I was one cycle short of what my doctor had wanted me to have. And I said to him, this is my body telling me that this whole year has been enough and I just need to stop and start the healing process then.

[15:20] Sonya: Yeah. So let's move into that healing process for you. Obviously, there was the physical healing. How did you navigate the emotional healing?

[15:33] Jodie: That's still an ongoing process? Most definitely, as I said, everything kind of happened in 2018. I put aside in various boxes. And once I finished treatment, my big thing for me that I felt I had to do was just to focus on the physical side of getting some energy back. And that was slow walking and those things, but also then eating really, really helpfully to try and get some of that toxin out of my body that I was really feeling. And so I had probably I think I was lucky because it was summer, so I literally ate a salad every day for every meal, both main meals for quite a few months there. And that started me physically feeling better, to then give me the strength and the space to start opening and unpacking the emotional boxes. And that took some time and that then became psychologists. Still, lots of meditation, lots of movement. For me, walking is a meditative healing aspect anyway, so lots of time outside in nature and writing about it and talking about it and that was incredibly important.

[17:09] Sonya: Thank you for sharing all of that. It's quite a story. And I went on an emotional journey just listening to everything that you were facing and that you had to navigate, but knowing how great you're doing now, which, as you say, we've always still got some emotional healing going. On in the background. When we've been through those big traumas and you had two significant traumas back to back, I think you're a real testament to resilience. And I just believe knowing yourself, knowing what was important for you and knowing how you wanted to navigate coming out the other side of it yourself, I love that you really took control of how you were going to go down that path. So the medical menopause talk to us a little bit about that because then.

[18:05] Jodie: That'S all thrown into the thrown in as well. Exactly. In hindsight, I know that I was in Perry beforehand, just in terms of cycle was fairly regular, but fairly heavy at times. There was definitely a lot moving that way. Anyway, I was probably about halfway through that first weekly treatment when I had the mother of all periods. It was like, you know, horrendously heavy for twelve days or whatever.

[18:47] Sonya: Oh my God.

[18:48] Jodie: And that was it. That was it. That was the last one.

[18:52] Sonya: It was like the big finale.

[18:55] Jodie: But I remember I went to the oncologist and my oncologist was on holiday, so I had his locum. And I said to her, this has been good. I think it was maybe day nine or ten is horrendously heavy. And she said, Well, I think that you need a marina. And I'm like, Why? This is going to put me into Menopause. Why would I have a marina now? And she said, well, it's going to stop the heavy period. And I said, I think my periods are about to stop anyway. Love me, laugh. And when I saw my oncologist afterwards, he said, oh my goodness, why would she say that? You know, and the frustration, the frustrating thing about that for me was I was strong enough to recognize and understand what was going on. And that at that stage, 48 year old that I was going to go into Menopause and it was fine. There would have been many people that going through that would just listen to whatever the doctor told them and so they would do that. So that was frustrating, but so it had the mother of all periods and then it just stopped. And the only thing I then had in terms of that afterwards was that of course, then left my eye and levels incredibly low. So I had a few weeks of just feeling awful and then my oncologist said, okay, when you're in this week, why don't we give you an iron infusion as well? And oh my goodness, that was the best thing that could have happened. All my energy came back and yeah, so that was that part of it done. And at the time I'm like, cool.

[20:46] Sonya: I know, that's what I was like too. Oh, yeah, sweet.

[20:49] Jodie: Hang it on. Probably lucky in some ways because from a hot flash point of view, there are bits and pieces of that and there's still a little bit, but I didn't suffer anywhere near what other people have gone through. And so there are the two things that you think about in terms of menopause is the period stopping and the hot flushes, and we don't hear much more about anything else. And to be completely honest, it probably wasn't until I started listening to your podcast that I actually understood some of the other stuff that I've been going through. Some of it absolutely, is chemo brain, because we know that can last for up to five years after. They talk about that a lot. And I've known other people who said, yes, literally five years, almost to the day, and those symptoms went, and so I'd always put lots of things to that, but now realize that it's really a combination. They're not sleeping well, obviously, the weight gain and the fluctuate, all the it's not even about the weight gain. It's actually about it being much harder to maintain where you're at. Yes, all of those things. Yeah, just some of those other really interesting things that you're like, oh, that's what that's wrong.

[22:16] Sonya: I know. Obviously, you and I were similar in that we did have all that chemo trauma as well as the medical menopause at the same time. And there are so many of the side effects of the chemo that are very similar to the symptoms of the menopause. And it took me a long time to also unravel and join the dots, and not even my specialists or my GPS were able to do that for me. It was literally me going, oh, okay, now that I know that, well, then that makes sense. And yeah, there are so many times where you just join dots and you go, if only somebody could have told me.

[22:54] Jodie: Yes, exactly. There's so many gaps because whether it be you know, I still see my breast surgeon. I've got one more appointment with her. I've got literally just in the last couple of weeks seeing my oncologist for my four years, so I've got one more with him and seeing my Jeep. I'm actually in the process of trying to change GPS because we've moved since all of that, and I'm very fussy now about who I select. And so I'm struggling to kind of find the kind of person that I want, but I'll get there with that so funny.

[23:29] Sonya: I had to change GP as well because mine retired. Literally the last time that I saw her was, I think the day of my last chemo session. Not the day I'm sorry, it was the day after I was having to go in in between my chemo sessions to have and I can't remember now what it was called, but an injection into my tummy for it was an immuno thing, white blood cell thing. And they told me I could do them to myself at home, and I just could not do it. So I would go pop into my GP's office and have that done. And that was the last time I saw her. And I balled my eyes out and just hung onto nothing and was like, I'm so glad that you just hung around until this point in my treatment because I would not have wanted and she'd been my GP for like 20 years. I think she'd been through obviously being there through my pregnancies and my children and then this. And I was gutted to learn that she was retiring and so I had to go through the process of finding a new GP as well. And I pretty much have been treating it like an interview process. I have had gone and seen GPS that were referred to me by friends and just gone, no, sorry, no, you're not actually good enough for me now. And I don't know if that well, now you know what I do know, I don't think I would ever have been as fussy about choosing my primary healthcare practitioner if I hadn't gone through what I have with breast cancer and everything that came with it.

[25:04] Jodie: Yeah, I agree. I am still yet to find the person that I want to be seen, but there's so many different things that I now look at and literally at the moment, I'm just reading bio. Anyone who doesn't have a website, I'm like, no, because I don't want to have to try out 100. I want to read something about someone first and what are their interests and how do they practice and all of those kinds of things. So, yeah, it's an interesting journey. And I think that the frustrating thing was any visits to any of any of those people that I'm seeing on a regular basis, and not one of them asks or is able to. Acknowledge the menopause aspect of it yet, especially for I guess I look at it especially for the breast surgeon and the oncologist most of the people that they are dealing with are going to be thrown into this situation and their lack of understanding about it is mind boggling.

[26:14] Sonya: Yeah, I couldn't agree more. And my breast surgeon is great. I've done a lot of work with her when I was working for Pink Hope, so she was a little bit more empathetic and open to those conversations, but my oncologist not at all. And he was very much just like, what's menopause next?

[26:40] Jodie: Yeah.

[26:43] Sonya: And he's an amazing oncologist. He is a brilliant man, but you're right, they're just missing this such important piece of the puzzle.

[26:52] Jodie: Yeah. It's kind of this very black and white thing for them. Oh, yes, you will go through menopause, full stop, end of story, about how we will help you through that process or what else we might be able to do to support you in that.

[27:09] Sonya: Yeah. And it's a shame, and look, I hope this comes, but it's a shame that there's not even someone that they can refer you out to that's like, okay, so you're going to go through chemo, you're this age, so therefore you are highly likely to go through menopause. So building into our team will be a menopause specialist.

[27:29] Jodie: Yeah, exactly. Because I think I know that my breast surgeon certainly had a breast cancer, and she was fantastic in that process. But literally, the day that I finished my chemo, I pretty much fell off her books then, too. Even though I still see my breast surgeon on a yearly basis now. She would call me every couple of weeks to check in on me, or I would see her before my appointment with my breast surgeon or whatever at that point. And I don't anymore. So yeah, it's interesting. There's very much a line in the sand about what they will cover and what they won't, and not really not necessarily open to all of the other stuff that goes on.

[28:20] Sonya: One of the final things that I'd like to have a chat to you about is when we were emailing back and forth and setting up this interview, you said, these are your words. I'd like to talk about the feeling of losing so much that makes up being a woman all at once. You want to expand on that for us?

[28:37] Jodie: Yeah, I was having a conversation with a friend of ours earlier and had a big epiphany actually in that conversation about exactly that, as to where it kind of came from. And that's something that I've processed a lot this year, so it's taken me a while to get there and it actually probably was exacerbated by conversation in changing hairdressers at the start of the year, and my hair had grown a little longer than it is now. It's very short now and has been very short ever since I finished treatment because I realized that I loved having my hair short. And so I had this new hairdresser when we moved and I showed her the photo of how I wanted to be because my hair had grown with all of the covered lockdowns that we'd had here in Melbourne and then moving and all that. It had been a long time since I'd had a haircut and she said to me, no, I'm not cutting your hair like that, it needs to be longer. And I'm like, well, this is how I want it. And she absolutely flat out refused and I was exhausted, I'm like, do whatever then. And they didn't go back to her, of course, but that then kind of triggered for me. The whole thing of women with short hair often are considered in a particular way for a start, but it then started me thinking about that whole feminine thing and for me, in the space of maybe it ended up being seven, probably more like eight or twelve weeks from surgery. And then that last period I had my ***** cut off and whilst I have breast shape now because of my reconstruction. It's made up of my stomach tissue. There's no breast tissue there anymore. So that thing that has you feeling feminine and that knowledge, that was what had my son and all of those things was gone. But then also your period stops. And that's the other thing that is kind of the two things that, as a society, we look at as being the feminine. You have ***** and you can feed a child, and you have periods and you can give birth, I guess.

[31:07] Sonya: Yeah.

[31:08] Jodie: It was a lot for me to deal with that. And as I said, it wasn't really probably until the start of this year when I had the hairdresser, not wanting to cut my hair short. But I'm like, Why did she want to do that? And she didn't know, obviously, everything else that went on. But it is the thing that then started me thinking about the things that we put in place to say this is feminine or this is not, rather than just embracing who we are and being who we are and who cares what society who cares what society thinks about any of that? Yeah, so as I said, that probably is not a particularly well formed thought and all that, because it really is something I'm just exploring and understanding that as a 51 year old woman, I think just even at that age, without everything else that I've been going through, it's probably something that I think we all explore.

[32:10] Sonya: Amazing. Jody, thank you so much for your time. I'm going to wrap things up. You know this question is coming because I know you prepped for it.

[32:17] Jodie: I did.

[32:18] Sonya: Jody, share with us what are you reading, watching, or listening to right now that is bringing you joy.

[32:24] Jodie: So I definitely prep for it on my walk this morning, sonya is going to ask you this question. What's it going to be today? And every time you ask a question of a guest, I think about, on that day, what that means for me. So today I was thinking about what I'm listening to and my week. I do a lot of walking. My week is broken down into three podcasts that I listen to on a regular basis. Thankfully, they all come out on a different day. Monday is The Imperfect from the Resilience Project, which I just absolutely love what they're doing in the world. Obviously, it sits quite closely to what I want to do with Collective Ripples as well. But their podcast is brilliant. I love it. So that's my Monday listening. Now, Tuesday and Thursday, which totally brings me so much joy, is insulation with embraciano. Both of those. Often I'm walking to work on a Monday with the Imperfects, and I am laughing out loud and having people stare at me weebly. And the same thing happens with insulation. And then Friday, of course, is the menopause. Thank you.

[33:42] Sonya: I'm very included in that. That bunch of. Incredible women. So thank you. Great that you shared your favorite podcast with us. Thank you so much.

[33:52] Jodie: You're welcome.

[33:53] Sonya: All right, we're going to tie things up there. Jody, thank you for your time. I'm going to share in the show notes, links to the podcast that you just mentioned, collective ripples and anything else that I come across when I'm going back and listening to it again that people might like to find. Jody, thank you so much for your time today.

[34:09] Jodie: Thank you, Sonya. It's been my pleasure.

[34:14] Sonya: Thank you for listening today. I am so grateful to have these conversations with incredible women and experts, and I'm grateful that you chose to hit play on this episode of Dear Menopause. If you have a minute of time today, please leave a rating or a review. I would love to hear from you because you are my biggest driver for doing this work. If this chat went way too fast for you and you want more, head over to Stellarwomen.com Au podcast for the Show Notes. And while you're there, take my Midlife quiz to see why it feels like midlife is messing with your head.