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Upfront About Breast Cancer Podcast

Episode 41: Through a rainbow lens – Navigating breast cancer as a LGBTIQ+ couple

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

Let’s be upfront about LGBTIQ+ communities that are affected by breast cancer. We know that cancer doesn’t discriminate and depending on who you are, and how you identify, your experience can be different.

Joining us for this episode is Mel Krollig and her partner Riki Owens-Bennett. Mel was diagnosed with breast cancer in 2016 at the age of 36 and has had fertility treatment, a single mastectomy, chemotherapy, and radiotherapy. Riki works as a community worker for the LGBTIQ+ communities in South Australia and has been by Mel’s side during her breast cancer journey. Riki and Mel have been together for 19 years, and despite a few COVID-19 related delays, married in 2021 in a celebration surrounded by family and friends.

We’ll hear about Mel’s experience of breast cancer, how Riki supported her, the challenges the couple faced together and how they navigated the system as a LGBTIQ+ couple.

This podcast was recorded in August 2021.

RESOURCES:

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Cancer Australia.

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

TRANSCRIPT:

Kellie Curtain [00:00:06] Let's be upfront about the challenges of a breast cancer diagnosis with LGBTIQ+ communities. We know that breast cancer doesn't discriminate and it's important that at BCNA we are representing the diversity that exists in our network. Depending on who you are and how you identify, your experience can be different. So today we're talking to Mel, who was diagnosed with breast cancer in 2016 at the age of 36, and her partner Riki, about their experience of breast cancer and how they have navigated the system as a gender and sexually diverse partnership. Mel had fertility treatment, a single mastectomy, chemotherapy and radiotherapy. She has been with her partner for 19 years. Riki's preferred pronoun is they/them. They were able to get married earlier this year, despite a few COVID 19 related delays in a joyous celebration surrounded by family and friends. Just quickly before we get going, a reminder that this episode is an unscripted conversation with our guests. The topics discussed are not intended to replace medical advice nor necessarily represent the full spectrum of experience or clinical option. Please exercise self-care when listening to this podcast, as the content may be triggering or upsetting for some. Welcome to you, Mel and Riki. Hi.

Riki [00:01:26] Hey, Kellie, how are you?

Kellie Curtain [00:01:28] So let's dive in. What did the breast cancer diagnosis a do to your world?

Mel [00:01:38] Yeah, it all came as a bit of a surprise. It was sort of tied in around a Christmas New Year period as well. So that was it was a bit hard to process sometimes because as a lot of other stuff going on. But it was a of quite a busy year with all the different treatments and changes in life and things of that time.

Kellie Curtain [00:02:01] Was it a shock? Did it come as a shock for diagnosis?

Mel [00:02:05] Oh, for sure. And I think for me, because it was a bit staggered, they initially thought it was sort of a pre cancer sort of style one, DCIS and then they found it was this triple negative invasive one as well. So the treatment plan sort of changed a bit as we went. And yeah, it was definitely a shock. I just kind of went a little bit into autopilot for quite a while. Didn't really process some of it until a bit later.

Kellie Curtain [00:02:37] Mm-Hmm. Riki, you're the self-diagnosed warrior. How did you deal with Mel's diagnosis?

Riki [00:02:49] Yeah, probably similar in the sense of it. Just it felt like it came out of nowhere. Absolutely nowhere. We knew something wasn't quite right, just from the symptoms Mel was having,

Kellie Curtain [00:03:01] which was what

Riki [00:03:03] It started initially as a bleeding nipple, which at the time I was getting into a lot of running to something that she, you know, realised she was very interested in doing. Mel will say, you know, she was never a sporty person, so this was something that she picked up and just literally ran with it. And yeah, it was just just weird. And we thought, Oh, you know, all the stuff that we've been aware of in terms of breast cancer and picking it up early to do with lumps, you know?

Riki [00:03:34] At that time, there wasn't really any major lump or anything that I could feel was a bit tender, but you sort of get that with, you know, normal cycles of life anyway.

Riki [00:03:43] So I mean, Mel did the right thing. She took herself off to the GP and started to get that process rolling, which we're very thankful for because, you know, that's that's obviously the starting point for getting on top of it so early. And then, yeah, it just happened so far. She sort of you didn't actually have time to think you just had to get down and straight into it and go, Right, OK, well, what was next? Yeah, what's next and what's ahead of this type thing?

Kellie Curtain [00:04:11] So once she saw the GP and you got your diagnosis, Mel, as you proceeded through the health system and various treatment, did you feel the need to come out that Riki was your partner? So how did you do that?

Mel [00:04:33] I think because at that point we'd been together for over a decade. We were thankfully quite established in the relationship. And so when we came to appointments, I think my main priority was to make it clear that Riki was my significant other. We weren't married at that stage, got married this year, but it was to be clear that if there was any major decisions to be made that Riki was to be involved in that process. And so I never really came into a room and said, is it okay if so-and-so comes in? Riki just came. We made all the appointments and I just went, this is Riki, my partner, and then carried on. And so I found that was a better way for us to go about it. It was just to be sort of open about it right up front.

Kellie Curtain [00:05:22] How was that received from health professionals or associated people that you came across in the course of your treatment?

Mel [00:05:32] Pretty well. We were actually quite lucky. We obviously had thoughts on things and whether, you know, when I was recovering from surgery are they going to be allowed in the room and different bits and pieces. But yeah, we actually didn't have any major issues throughout the whole process. Everyone was quite open and I was able to come to all the necessary appointments and things.

Riki [00:05:55] Yeah, I think it wasn't really a question of if I would be coming along to appointments, things, it was just like, OK, I'm here, where's actually the seat that the partner sits in? You know, where else have a treatment or anything like that? I have to admit I was quite proud of how it was. We never actually had that discussion of disclosure with health practitioners that were supporting me along the way. It was, you know, we just because we just didn't have time to do it. I just was quite open and honest. And I think that certainly helps when entering a situation like this. If you set that standard or that law straight away, then it's there's no room for anything else to happen. So it was, yes.

Kellie Curtain [00:06:40] Riki, you also are a community worker for the LGBTIQ+ community, so your experience is varied. I take it, and not everyone has such a welcoming or positive experience, and I guess someone that isn't in a relationship might find a level of nervousness.

Riki [00:07:03] Absolutely. Yeah, I mean, in the work that I do with the community in general, I've just heard too many horrible stories, I guess, for people just going to see health practitioners for simple things, I guess like health check-up or, you know, all sorts of things like that where unfortunately, interactions with medical professionals have been quite negative or quite ignorant or just plain wrong, refusing to treat the individual because they are part of the LGBTIQ+ community. So I, yeah, was definitely worried my self worry status came into play, quite strongly. And so, you know, I was focusing on what she needed to. I was focusing on the bigger picture, I guess, for us as a couple. And you know, how is this going to be received? How are they going to treat us? Are we, you know, am I going to be ignored as the partner? And things like that. So yeah.

Kellie Curtain [00:08:05] So a positive experience for, you know, one of the first things that happened once you were diagnosed was the question of undergoing fertility treatment. Can you talk us through that?

Mel [00:08:21] Yes. So it wasn't, you know, wasn't ever something that I'd thought about sort of fertility at all. We had had discussions on kids across the years and it had not been a priority. And so when the option was presented, because obviously during chemo, you can get a thing called chemo pause where you cycle stops and being a younger person. The concern would then be that the cycle doesn't start back up again and therefore you become infertile. And so even though we hadn't really thought we wanted kids once it came to that crunch point of doing chemo or do the fertility next, I thought I didn't want to do it. So we said, no, the fertility. And then I had a bit of a meltdown say, I'm not sure whether it was the fact of saying no to fertility or the realisation that chemo was about to start. But we reassessed it and thought, look, there's so many decisions happening right now. There's a lot going on. There's a lot to process if we do the fertility option that delays that decision for us by a few years because as part of the process, they store the eggs for us and it was no cost for the story.

Kellie Curtain [00:09:36] And that's free of charge to,

Mel [00:09:38] yes, yes, the storage is for the procedure cost a little bit, but nominal in the scheme of things. And so we thought that would then give us five years to contemplate things, get through the actual treatment and everything. And if things didn't restore and we did want kids, we still had that kind of back up measure there. So it was, I think it was that peace of mind. We kind of went through that process.

Kellie Curtain [00:10:01] So it alleviated a little bit of that pressure to make all those big decisions at that one time.

Mel [00:10:07] Yeah, yeah. All it did was delayed chemo by about two weeks, I think, and you know, a nominal cost. And then, yeah, it just took one of those pressure points off.

Kellie Curtain [00:10:32] As part of your treatment, you also had a single mastectomy. How did you deal with that emotionally and, did you decide to do a reconstruction, and if so, why not, why not?

Mel [00:10:51] We never really thought about reconstruction aid due to my, I've got smaller breasts, and so the nature of the cancer and invasiveness that it was throughout the whole breast say there wasn't an option at that stage really to do reconstruction. So in some ways it was made easier because it was that this is what had to happen. So if we wanted to look at reconstruction and stuff, that was going to be a future timeline. So it helped to just be able to go, Yep, okay, this is happening right now. It's obviously sort of coming up in about four or five years since surgery. And so everything's obviously healed and everything now. But there is obviously that lopsidedness, which I've just grown to do with. I'm aware that for Riki, there is a lot of other surgeries that you have to go through and you know, people have positive experiences, but there's also quite a few that have negative experiences through that. So for me personally, I just chose not to do the recon. If anything, I was probably thinking of potentially having the other side off just for symmetry. But I'm quite happy with how I am. I don't bother wearing inserts or anything at the moment. It's all just this is me I've gone through about, Oh, this is just who I am now. So people have an issue looking at it. Just look away.

Kellie Curtain [00:12:23] Riki, how did you process or cope with Mel having that single mastectomy?

Riki [00:12:33] I think once you once things started to show you that they were quite serious, you know, and I mentioned before that we sort of this process started off just some, you know, low key diagnosis. I think you know it better. If there's better turns out there, I do apologise. You know, every cancer diagnosis is serious.

Riki [00:12:57] But once things started to show they were quite serious, it was a matter of right. Let's get this out of Mel's body. You know, I, the body itself is in Mel's control. It's in her domain. She has, you know, full autonomy in decisions over how she treats her body, how she deals with her body and things like that. And I fully respect that decision for Mel as a person. But in terms of this being a health focus, it was certainly 100% her decision. So I always felt that any thoughts and opinions I had on the matter was actually irrelevant. To be honest, I just wanted Mel to be healthy. That was my focus. I want her to be around for decades to come. And if this was part of that process of ensuring that would happen, then that's what needed to happen. I think both of us were quite pragmatic about these decisions for this situation.

Kellie Curtain [00:14:01] Was there a sense of guilt at all that your partner's going through that and she had to have a major physical alteration?

Riki [00:14:14] Yeah, I think. It was pretty tough in that regard. She's never had to have any surgeries in the past, Mel's been pretty healthy all her life. We always joke about I've always been the cluts of always the one, you know, I've had multiple surgeries under my belt for sport injuries. Yeah, all sorts of things like that. You know, and I guess as a person having the same body parts as Mel, it's, you know, it was quite a lot of sadness. I guess that one this is the first surgery Mel's had in her life, two cancer related and three, you know, Mel's had to have a body part removed from, you know, her body. And it was, yeah, it was quite a complex set of emotions. And I think as part of the process, I just pushed them aside, which is not necessarily healthy coping mechanism, but it's supporting someone through cancers is complex. It's challenging. It's hard. Your focus is on that person, so anything that you tend to feel you, you do push aside, you sort of let yourself up, but you just think, well, you know what? I'm important in this person's life is actually a priority to focus on my partner who's going through this really traumatic experience in all sorts of manner.

Mel [00:15:38] And it wasn't till sort of, you know, in more recent years that we kind of discussed it again. And, you know, there was elements of guilt from both sides of things. But yeah, at the time, there wasn't an over analysis on it because it was I get the job done to get this sorted mentality.

Riki [00:15:56] Yeah, it's like one surgery came up deal with that. What's next? You know, treatment came up. You know, one of those appointments, let's do one treatment at a time and see what side effects Mel had and how she coped, you know, especially in terms of radiation and chemo. So, you know, so it's a piecemeal approach. You can only focus on that next appointment, next treatment, next surgery being faced and then you deal with that and then you move on to the next everything else. It sounds simplistic, but everything has become superfluous and you just you do what you can to survive and get through this, you know, really intense time.

Kellie Curtain [00:16:35] OK, so tell me, how did you how did you pick and choose who you wanted to share information with and how did you go about it?

Mel [00:16:47] So we had the idea to actually do a private Facebook group initially. We told a few key people and then we thought, there's a few, you know, there's a small network that we wanted to keep up to date with what we were doing at that stage, sort of. I didn't want the news public and getting questions by a million people. So I created quite a small and private group that I added a heap of people to. And then that's where I did updates. So I would do regular updates where I was at the good and the bad. You know, I've just been to this doctor's appointment. Here's what came out of it. And now we're thinking about this. Oh, now look, this has happened. And I found that quite a cathartic process as well. So Riki and I would sit down at the end of the day, a draft up what I was thinking and we'd sort of process it together because obviously, when you go into an appointment, I think it's always beneficial or a recommendation for anyone going through sort of major life events is to have that secondary person with you because you hear different things. And particularly for me as the person going through treatment, I sort of focussed on key points. And then Rick is the support person or secondary person came out with other information. So when we did that debrief later, it was quite good to make sure that we both understood where we were at and what was going to be coming next. So to then be able to put that out to the network that we chose. It meant that if you had any conflicts with anyone or there was any, you know, you didn't want to work, you know, all those sort of side of things, you could keep it quiet close as to who actually had that information. We did sort of spread it wider later, but it also means for me that anything about my treatment is in a separate space to my live Facebook feed. So my Facebook feed then didn't get flooded with breast cancer stuff. And I don't have it coming up in my Facebook memories and all that sort of side of things. So for me, I found that quite important that I can choose when I want to look at that information again now. And if I want to at all. So, yeah, I thought that was quite an important thing was to have that chosen network of who it was that you did want involved in that process. And then it meant when we needed help on staff, you know, if we were having a bad week and thought we need someone to do the groceries or someone to help clean the house or whatever, you could put a call out on there and say, this is what we're after right now. Because that's what people quite often struggle with is how can we help? So if you just give them a few options of we're struggling to cook meals, can someone give us some dinner? And so we didn't have to do it too many times, but when we did, we definitely had that network around us. That would help.

Riki [00:19:32] Yeah, I think we were quite open from the start about the whole situation we were facing. And I think that was really, really key point in terms of. You know, having that control, I guess, over the information that we were sharing and to whom, but also set that line share for those people in our lives that they knew, right? This is what we're facing. We're happy to share this information for you. You know, and if you are wanting to help out, just contact us rather than just try and do it for us as well. We were, you know, quite lucky. I guess, you know, in a weird sense that we've both got people in our lives who have gone through breast cancer or cancer specific, you know, other forms of cancer as well. So we were able to tap into their knowledge and experience, which was absolutely, you know, invaluable for us. You know, with what we were facing, you know, got some really great tips as well that you know, you don't often come across, which is great. And yeah, it just just provided a very good way of of putting down boundaries for us, as a couple, but also for me to say, Hey, you know, Riki is my primary care. And you know, the other one is going to be doing most of the work. But at the same time, you know, we will reach out when we when we need that help do sometimes we need a bit of a poke. Certainly, I did. Yeah, from work to take some time off, I was still working throughout the whole time as well, trying to make sure that our finances where we're good. And I, yeah, I actually got told you need to take time off as well, which is really good.

Kellie Curtain [00:21:16] You mentioned that you were very clear with health professionals saying, this is my partner, this is my carer, this is my default person in an emergency. Did you feel the need to make that clear amongst your family? Because in all sorts of make up families, sometimes you have those who are not accepting or don't recognise your relationship. So did you feel the need to make that give that clarity to your family?

Mel [00:21:50] Yeah, for sure. We'd obviously been in a relationship for quite a long time at that point, but there was also an element of it that was hidden. But we, you know, we were going through a difficult time showing affection and support to each other sort of couldn't be hidden at that time because that's what I needed. I needed that. You know, I needed Riki to be that close person next to me, no matter the scenario, because you know, you're a vulnerable person at that stage. So when you go even just to a normal family event or something, your mental state is different to what it would have been 12 months before. So I think it was clear for particularly family that were close by to say, Look, you whilst you love us and want to help where you can. Riki is the primary carer, so you know you might be the mum, the sister, the auntie, whatever. While we feel this is important. Riki's primary and anyone else is really secondary. So if people had other obligations, it was. It was fine because we had a broader network. That secondary network was we had a decent sized network that we could reach out to different people so as we needed it. But yeah, it was definitely worthwhile getting it clear where the boundaries were.

Riki [00:23:15] Yeah. And again, that wasn't something I. It wasn't something, as for me as a partner, I wasn't necessarily pushing me to do that at all. This was something that Mel did again. Without even us having that discussion, Mel was very clear that, you know, this is the situation. You know, there's people, emails, family who are within the health system and, you know, definitely capable of taking on that caring role from a medical perspective. But Mel was very, very clear, which I was quite relieved that I was quite concerned, I guess, about not being recognised as that significant other female in terms of that caring role, but also a relationship role as well. So for that to happen, it was a huge weight off of my shoulders and I was actually very thankful that, you know, had the courage to do that.

Mel [00:24:09] And also, I think from a, you know, if you if something went wrong that it was clear that Riki was the person that people needed to defer to, even amongst the family that, you know, even though we weren't married, we'd been together a long time. And it was Riki that would make the decision on any of those sort of things.

Kellie Curtain [00:24:30] Did you face any opposition with that or pushback from from anyone?

Mel [00:24:38] Not specifically. There were times where they wanted to do. Some family members wanted to do more and we had to just say, not now. And I think most people were happy for the I think a lot of people actually quite appreciated the the group that we created on Facebook as well because we could have people in there. And even if we had some family that we didn't see that often but wanted to keep in the loop, they were sort of in that space.

Riki [00:25:09] I think it was more, you know, there was definitely the desire to do as much as they could for it, because they are family and they, you know, we're lamenting the fact that Mel was going through this and they knew themselves, it was quite an intense journey to go on. It was probably more necessarily pushback from them, but it was actually saying to them. You can you help by actually doing something else, you know. They needed to take a break themselves before, you know, things got more intense in terms of Mel's journey. We knew there would be a lot of rough patches coming up, and that would probably be the time that we would need the help. But from the the first appointment where the diagnosis was actually given, it was official. It was like, OK, so we've got a say, simple surgery, but it's not simple. But that was the first thing we can do with that. That's OK. Having done surgeries myself, I knew what was involved in surgeries in general, but the other stuff, we knew that's where we would need that help. So we, you know, had to actually give them a bit of pushback. I guess that's one way of looking at it.

Kellie Curtain [00:26:49] In any family situation, you always had people that you closer to than others, and yet when there's a crisis of any sort, people band together and it's like, Yeah, let's you know, we're all a team. Yes. So you've obviously, Mel, you know, when you don't always have everybody recognising your partner. How did you juggle that with? Okay. So you're sort of not really comfortable in my relationship status, but you're still my family and you want to help me through this experience.

Mel [00:27:28] Yeah, I think that's just having those clear roles. And as RikI said before, kind of giving them spaces where they can help. So I've got family who are nurses, and so I didn't really need them in the initial stages. But when it came time to changing dressings or assisting is just this wound and cleaning and those sort of side of things. I was able to reach out to that family and say, can you help there? You know, I've got other family that were good at preparing food. And so it's at that point, it's almost like the relationship in a way gets a little bit sidelines like their primary focus at that point was me. And what could they do to support me? And as a consequence, obviously then support Riki as well. But it was, yeah, we just kind of made it clear.

Riki [00:28:23] Yeah, and I think I think we're pretty lucky, especially, you know, for those emails, family that aren't necessarily wholeheartedly embracing of the relationship that we've had and have now is that they still will respect the fact that we are in a relationship. And so that's been, I guess, a big benefit for us in the sense that, yes, we were able to say to them, look. I'm trying to carry, but at the same time, we will have you along for the ride. You know, it's very interesting. But I think for me as as Mel's partner, I made sure that any instruction that was being given was coming from there. So, you know, I became very conscious of that dynamic between us as a couple, but also, as you know, the broader family that we were dealing with. So everything came from. So it didn't look like I was determining everything because, you know, again, this isn't about me. Yes, I've definitely got I was my primary focus in this whole journey, but I was also conscious of that messaging that, you know, it wasn't I didn't want to be that person that says, you know, no, you can't do this, you can't do that. You're not to do this, you're not to come at this time, you know that type of thing. It's one I don't feel right for me because that's for me to to be telling people, but also aware of that other stuff of that perception being seen as, you know, I don't want to be that bossy career partner who's, you know, controlling the whole situation and not wanting the family involved and stuff, which certainly wasn't the case. So, yeah, so all these other things that go on in the background that I guess people don't realise as well. And just to add to the complexity of that years of treatment and surgeries, that was the same year that we had the Marriage Equality Postal Survey debacle through that, you see, that was all going on at the same time as well. So it was just such a weird 12 month period. It really was a lot going on for both of us.

Kellie Curtain [00:30:29] Mel, you mentioned that once you had that diagnosis and you were going through treatment, you weren't the same person you were before. All of a sudden, you know, the goalposts had changed and you need a different things. Riki, were you able to support Mel physically and emotionally like you wanted to in a public setting whether it was, you know, with family in the in the medical setting where you were able to offer her that comfort?

Riki [00:31:01] Oh, I have to think back for years now, I have to say it was I. I'd like to say yes, thinking back. It's yeah, it was still. I was still very cautious, I guess, in medical settings when we were, you know, having appointments and chemo appointments, radiation appointments, any surgeries now has, you know, when we had to rush to the emergency department one night because Mel's appendicitis, the appendix, I decided to join the party and you needed that removed and stuff like that. It's for an LGBTIQ+ person and couples and families. You know, you're always second guessing how safe an environment will be. Even though in theory, you know, going into the public hospital, it should be a safe place to go. But more often than not, it's not for for some people. So I was always second guessing. I was always on alert when we were in these settings. You know, once we met a particular practitioner once or twice, I knew I could relax in that regard. But still, you know, you're in waiting rooms, you're just in a setting where you're in a mix of of a huge variety of people. You don't know how they're going to react seeing a LGBTIQ+  couple together. But at the same time, you know, I was like, You know, I don't give a crap either, you know, my partner's going through cancer. And if she wants to hold my hand, so be it. You know, as Mel said, we've been together for quite a few years at that stage, and you can't hide that part of your relationship. You want to be able to touch someone sensitively on the shoulder, on the thigh, you know, as you would between most couples. It's yeah, it sucks that you have to second guess this stuff, but a lot of LGBTIQ+ people will say that you do. You always you always second guessing your environment around you for safety.

Kellie Curtain [00:33:02] Yeah. Mel, how did you react mentally? Did did you feel like you got the support even as a couple? Do you felt like you needed the support of others that had walked the same path that you had? And did you find it?

Mel [00:33:23] Having support around that was that lived experience was good. We had some friends that had gone through cancer, we'd had some family members and things, so it was good to reach out to them. I found some, you know, online groups, but that so that combo of queer and cancer, there wasn't sort of a network of that around. It was more, you know, if we needed sort of queer support, you'd go to one spot and if you needed cancer support, you'd go to another spot. So I think it's important to have those networks where those areas do cross over.

Riki [00:34:06] Well, as I read, we kind of struggle to find the LGBTIQ+ specific space, you know, in terms of support and lived experience for breast cancer. That was one thing I hunted out for weeks on end trying to find something that I could go to as a carer, but also would be safe in doing so as part of an LGBTIQ+ couple. I know more connected with quite a few breast cancer groups here in Adelaide, which is fabulous, and I was relieved that Mel could connect with others in that same scenario. And they've been lovely. They've welcomed me into those groups, which has been fabulous. But I'm also conscious that's not my journey, you know, it's not my experience in regards to this as well. So it was, yeah, it was. It's bittersweet. I guess Mel had her connections, which is great, and I was still trying to find those connections. So, yeah,

Kellie Curtain [00:35:02] yeah, we've got a long way to go, haven't we?

Riki [00:35:08] Definitely. Yeah, a few more steps.

Kellie Curtain [00:35:13] The system's not perfect, though in an ideal world, we would have people being out and proud and feeling no discomfort or risk in asking for what they need. But that's not where we were at the moment, is it?

Riki [00:35:28] No, unfortunately not. And if you wanna jump in first? You know, I mean, it's really crappy to have to say to someone, Look, you know, you're going to have to weigh up if this is something that you can do safely or not, if it is important as part of this process, specifically, you know, in the work that I do with people. That's something a discussion we often have of when is it safe to disclose? Is it, you know, do the benefits outweigh the negatives in that regard? You know, and we shouldn't have to second guess is where we're going to get. You know, lifesaving treatment for breast cancer or any particular condition at all. But we know that it's not necessarily a reflection of of us as an LGBTIQ+ person. We should have the safety; we should have the capacity to share. This is part of who we are as a person.

Mel [00:36:19] The staff need training. Hospitals need training. They need upskilling. They need, you know, more knowledge in terminology and treatment and all those sorts of things.

Riki [00:36:28] Yeah, it's definitely reflective of, you know, I know for a fact that there's there's no component within tertiary degrees for doctors, for nurses, for any allied health practitioners that focus on this specific community. You know, it might be mentioned once in a lecture, but there's no specific unit. So by the time health practitioners do come out into the community, they are lacking knowledge.

Riki [00:36:52]  And you know, it's once you start venturing into two parts of your LGBTIQ+ community, such as the transgender, diverse community or people with intersex variations. You know, this is stuff that is really quite important. It's quite crucial to their well-being, but crucially to their safety as well when receiving this treatment. So it's definitely something needed across all parts of the health system.

Kellie Curtain [00:37:19] What would your what would your advice be to those who are about to walk this path? You know, as to disclose what are some tips that you might offer as they as they navigate their own paths and everybody's experience is different? There's not a template, no matter who you are, but there might be some others that benefit from your experience.

Mel [00:37:48] I think having those clear boundaries can really help, you know, whether it's family, friends, doctors, those sort of side of things making it clear who your support person is, you know, if you're in a couple, this is my partner. They are to be involved in the decision making. So for me, as I said before, I found it beneficial to have that information up front. You know, if it was a single person, the need for disclosure to me, technically, it's a body that has cancer like it shouldn't matter what the, you know, gender or sexual activity is. It's a body that has cancer and they should be getting the same treatment. It's just the attitudes of the people. Giving the treatment can sometimes change once they find that piece of information may turn out and you are in a vulnerable state. So if you know my only thought would be if you were a single person, whether it was important to have that piece of information upfront or not, or just to make it clear who your support person is at that time,

Kellie Curtain [00:38:54] and obviously to make sure that in your medical forms that you actually make that clear to so that when you're feeling out those legal forms and you know who to contact in an emergency, that it is your nominated person

Mel [00:39:09] and a safe person for you.

Riki [00:39:11] Yeah. And I think that's something that isn't necessarily discussed generally in the community like the broader population is, you know, the idea of power of attorney or, you know, your formal will and stuff like that, too. We still haven't done one ourselves, which is pretty much calling the kettle black. But, you know, we're quite aware of even if people do firmly acknowledge and have you know, someone written down in these intake forms, is someone being the nominated support person or in emergency contact? Sometimes that it's not respected or, you know, other family members can take over and have that legal capacity to do that by law, which is really quite scary. But it's I guess they're going through cancer in general, having your person to rely on. But having a support team, you know, a group of close people who might know your situation intimately and that you can trust and respect, you know, having them close by ready to jump in whenever you need it. You know, we've got a close circle of friends that they were the go to for us. When we needed to have that, one of us needed a break or, you know, food cooked or things, you know, to help us out along the way.

Mel [00:40:35] And you can have different people for different things. You know, this group of people is for the light-hearted stuff, but we don't want to talk about cancer at all. These people know all the intricate details that are happy to get into the nitty gritty. These people are good for advice on how to cope with stress or those sort of side of things, so it was good to have that range. I also think it's important to probably at that time in some ways, pick your battles. You know, you're going through a major event. Yes, obviously you want the the best treatment by everyone possible. But sometimes it might be that you just have to think of yourself in that time and just, you know, cut people off for other people. We, you know, do what's best for you at that time. Get through what you need to get through and then, you know, if you need to talk to others after that, do that then. But yes, say if you get treatment by certain people, not how you're expecting, it could be that you don't raise the matter, then you can note it down and raise it later or get the support person to raise it. You don't have to fight everything at once. You get yourself through the treatment process.

Riki [00:41:42] It's weighing up the context that you're facing at that point in time. You know how well you're feeling if you are going through chemo that it's going to knock you for six, you know you're going to be feeling absolutely, absolutely horrible. It's weighing up. You know, the actual geographic location you're in. Metropolitan areas tend to be a bit safer than regional areas. So, you know, if I like living in the regional area will know that attitudes towards LGBTIQ+ people and communities in general aren't anywhere near as great as perhaps they might be here in the metro area. And, you know, it’s still not perfect by all shape and means here, but I guess there's that little bit extra element of safety here in the urban urban centre of the state, but it's knowing, you know, you just I mean, this is part and parcel for any LGBTIQ+ person when they go to seek health support, advice, treatment and things like that. You wait, you have to wait up. You can't just go in and go straight to it because inevitably you're always going to be thinking about it. So it's yeah, it sucks, it really does,

Kellie Curtain [00:42:52] yeah, but I think you're right, you've got to put your health first, don't you?

Riki [00:42:55] Yeah, yeah, yeah.

Riki [00:42:57] And I think finding the, you know, I found great benefit in the different online support networks that I found because they did have that lived experience. You could complain to them about a particular thing and there would be someone in that group that had had a similar experience. Or they would be like, Yeah, I can understand. I didn't quite go through that, but I had X-Y-Z happen. So I think, yes, you can have all your family and friends be, you know, as helpful as they like. But I think finding that network as well, whatever, whether it's in person or online or whatever of people that you can connect with a shared experience is very beneficial.

Kellie Curtain [00:43:39] Which is why BCNA has set up the online groups for LGBTIQ+ communities, which we're really excited about. And it'sa new area about we're learning and we're listening, and we're looking forward to offering that safe space, which is moderated and monitored so that people can feel safe and can ask those questions that they are perhaps not comfortable asking, you know, other people which is really exciting.  And you've come out on the other side and you were able to get married this year, which is certainly a silver lining.

Mel [00:44:28] We got there, finally got there. Yeah, and it took 19 years, but we got there and it was a very we made sure it was a very hardy sort of celebration vibe to it. We wanted that really, you know, we'd been together 19 years that the formal side of it was just really a formality. It was that being around the people that had supported us over the years and, you know, been there during the treatment, been there, you know, through family emergencies and, you know, redundancies and all sorts of things. And we'd finally come out the other side and it was like, let's have this big party. So I think it's important to right. If you do get to a milestone, have a significant celebration as well, celebrate any sort of milestone.

Riki [00:45:08] Absolutely. You know that you that Mel had her treatment and you know, we had a heap of other stuff happened. Is she more family death? Unfortunately, redundancies here than a global pandemic just to throw into the mix. It's it's been a big turning point. I think for both of us, realising there are specific things that we want, we want to celebrate, you know, and why shouldn't we? We celebrate that we've gone through a lot, not just in the past four years, obviously, but before that as well. So yeah, that's just getting to it. And it was it was a massive celebration which we loved. Absolutely loved a great day.

Kellie Curtain [00:45:45] That's great. Thank you. Congratulations and thank you for sharing your story with us on up front today. Also under the guidance of a LGBTIQ+ advisory group. Also in our show notes, you'll find numbers to call if you want to speak to someone about getting help in navigating the health system or accessing emotional support. There's also a list of terrific resources. This podcast was brought to you with thanks to Cancer Australia. My Journey has a range of specific resources related to the LGBTIQ+ community and breast cancer. So visit myjourne.org.au. Thanks for joining us on upfront, I'm Kellie Curtain. See you next time!