00:00:01 Intro
Thanks for listening to the GOSH podcast. GOSH stands for the Gynecologic Oncology Sharing Hub, an open space for real and evidence-based discussions on gynecologic cancers. We'll share the stories of gyne-cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecologic cancers. Our podcast is produced and recorded on traditional unceded territories of the Musqueam, Squamish, and Tsleil-Waututh Nations. It is produced by the Gynecologic Cancer Initiative, a province-wide initiative in British Columbia with a mission to accelerate transformative research and translational practice on the prevention, detection, treatment, and survivorship of gynecologic cancers.
Hi, I'm Nicole Keay, and I'm Stephanie Lam and you're listening to the GOSH podcast.
00:00:57 Stephanie
Hi, everyone. Welcome back to the Gosh podcast. I'm Stephanie today Iβm very happy to introduce Anita Wright. A patient partner with the Gynecologic Cancer Initiative. You may have remembered her powerful story. Just a couple of episodes earlier this season.
We also have some really exciting news to share Anita will be joining Nicole as the new Co-host of the Gosh Podcast. Over the last couple of months and years, I've transitioned into a new role as a knowledge exchange leader for mental health and substance use service at Fraser Health Authority, so I will be moving on from the GOSH podcast. It's been an incredible journey and we're very excited to have new voices on the podcast to continue sharing patient stories, research and just really important information about gynecologic cancer. So, Anita Wright is a 76-year-old cake artist from New Westminster with more than 600,000 followers on TikTok. Anita, known as TikTok Nana, has captured hearts with her mesmerizing acrylic piping art. Once a marketing manager, she found her art history after retiring and starting her own event business in Toronto. Upon moving to Vancouver in 2017, she ventured into baking custom cakes and sharing her creations online. In 2022, Anita received the Stage 3 ovarian cancer diagnosis and she's been openly communicating about this diagnosis to her followers. And now uses her platform to document her ovarian cancer journey, aiming to increase awareness from this type of cancer.
Welcome to the podcast, Anita, and thank you so much for stepping into this role and continuing to use your voice and sharing your experience with the GOSH podcast audience.
00:02:46 Anita
Thank you so much. I'm so excited to be here to take on the role of the Co-host of this GOSH podcast. You have no idea what it means to me. Thank you. So, it's my understanding that Stephanie and Nicole launched this gosh podcast back in October 2020, right in the middle of COVID wonderful pandemic that we all had over the past four years. You produced more than 50 episodes, and I think we're going to discuss some of those milestones that you guys have reached in the wonderful stories that the guests have shared with us.
00:03:22 Stephanie
Amazing.
00:03:23 Nicole
Stephanie will miss you, though.
00:03:26 Stephanie
I know. Itβs very bittersweet, but I think this is the definitely the right move to kind of continue sharing the most up-to-date evidence and stories from patients and researchers and so really looking forward to where the both of you are going to be able to take this platform and continue sharing all of this important message with the audience and the GCI community.
00:03:59 Anita
Well, I certainly haven't known him for very long, but I can tell already by your energy how much you've added to this, and I know that we are everybody's going to miss you.
00:04:07 Stephanie
Ah, thank you.
00:04:10 Anita
Stephanie in the very first episode of the podcast, Nicole and you discussed the mission and the goals that you set for the podcast. How do you feel that you have achieved the goals so far are you where you wanted to be?
00:04:26 Stephanie
That's a really great question and you know, I think Nicole chime in here because I think where I really came from as someone who was part of the GCI team was wanting to build a patient centered and patient-oriented platform to share voices and really, the reason why we had selected this platform was because of your idea, Nicole. And you know really kind of pulling those experiences stories and wanting to build a platform that patients identified as, you know, being a really impactful and powerful platform. So honestly to me, even just the creation of a platform where we were able to come together as. And share patient stories and patient voices. You know, the whole design of the podcast was driven by and you know, someone with lived experience was really kind of the main mission for myself and, you know, just the ability to then go on and share all of these different stories as well as, you know, the latest research findings from the group at the GCI has kind of exceeded my expectations of the podcast and has really kind of flourished into a platform where it's turned into so much more than what I initially imagined. But Nicole, I'd love to hear your perspective because this was this was your brainchild, I guess this was your baby back, you know, four years ago.
00:06:08 Nicole
it's crazy to think that it's been four years, and we started this, Anita. Stephanie and I had no idea what we were doing, like Googled how to start a podcast and taught ourselves how to edit and it just works through all the like nerves of what are we doing? How do we sound and what is it going to be like? Those are really somewhat intimidating, but bum process. And I really hadn't thought too much about what it might become more or in the community that we would build. It just felt like a good place to start and to blow something because it had been helpful for me to, you know, use podcast while I was going through my journey to fill my time to, you know, it just marks like ok, well, this might be something that could help people connect. And originally, I thought more around just from like the patient perspective, and you know, helping share stories and making sure people didn't feel so alone while they were going through their journey. But as Stephanie and I started to collaborate and talk more about, you know, how could this idea also support, you know, the initiative of the GCI lending in the voice of physicians and scientists and bringing in research that a lot of us who are more on the patient side or in that you might not have access to or, you know, get as in-depth as we've been able to go. I think just brought like a whole different element to the community that we were starting to build. And I love that. I love that we both so perspective and we then you know, moved on to provide all different types of stories and bring Well, ones in and really create such a wonderful space to provide insights and bring people essentially together, which I love. So, I kind of agree with you, Stephanie. It really farts seated. Any applications that I would have had, you know, it was just a little idea that I thought might be wonderful to do. So, it's been so great to be a part of this, over the last four years.
00:08:27 Anita
Pretty, pretty amazing. Stephanie, you've got a lot of experience in healthcare through your role at PHS A and now at Fraser Health. How is this multifaceted journey shaped your perspective on patient care and in the gynecological cancer?
00:08:44 Stephanie
Yeah, for sure, I think, you know over the last couple of years I guess it's now been, actually, it's only been about two years since I've stepped away from my role at the GCI, but over the last two years I've learned a lot about interfacing with our healthcare system. And you know, I'm sure as the both of you have experienced first-hand, you know our healthcare system, you know there are many benefits to it. But there are also many challenges and I think that, you know, as someone who works intimately with the healthcare system, I think, you know, oftentimes we focus on trying to find ways to address the challenges, you know, and I think more and more now in healthcare. I'm seeing that there are folks who are really prioritizing patient voices and patient experiences. And that is something that's just so fundamentally important. And it's always been something that I've held on to as a belief even as I've interfaced with the GCI and research that patient voices really should be at the center of what we do as a system. And it's been really amazing to kind of see more and more patient voices being brought to the front of the way that we do everything from planning from, you know, prioritizing from, you know, evaluating and acquiring knowledge, right, they think that those experiences and those voices are really fundamental, but also at the same time as I think my experience in the healthcare system has.
Allowed me to
Really kind of understand some of the other challenges with healthcare. I think that you know integrating patient voices and patient experiences is so important. But then also how do we balance that with some of the, the multitude of other challenges and experiences of people?
Interfacing with the healthcare system, you know a big thing that has.
Came up over the last couple years over the course of COVID is we are thinking about our workforce and so I think those things are also really important to consider and I think it's been really impactful to be able to kind of look at the system from multiple perspectives and be able to kind of understand.
How we can all work towards prioritizing the patient noise while still making sure that we're building a system?
That is healthy for everyone as well as healthy for, you know, our planet and our Earth and all of those sorts of things. So, it's been a really, you know, impactful journey to kind of as I navigate different spaces within the healthcare system. But it all kind of comes back down to how
We're able to build into, build the patient voice into the work that we do at various different levels.
Within, within our environment and within our control.
00:12:05 Anita
Yeah. And I couldn't agree with you more.
I didn't know that before. I have to say I didn't know that, but certainly over the last few years of my journey, I certainly got that now.
00:12:11 Nicole
Yeah.
00:12:19 Stephanie
Yes. Yeah. And it's challenge. It's a challenge, right? Because I think it's something that is not easy, not easy to see unless you're.
Or intimately connected with the system. Right. And so, I think that's sometimes becomes a challenge for folks to understand, even folks who work within the system, right. I think there are many people behind the functioning of our massive healthcare system.
And you know, sometimes people don't people.
They can't understand and appreciate the intricate challenges.
That are at the
Front lines because they can't see it, right. And so, for myself, you know, that's something that I try to be very mindful of going into the work that I do is that I will never fully understand what it's like to one.
Work in the front lines and to be at the point of care in many kinds of situations, right? So, if I can keep that in mind and lean on the experiences and expertise of frontline folks, patients, people will with the experience.
I think we would all be able to.
Better, better serve our system and better serve our communities and people who interface with the system. So yeah, it's been a really amazing journey to kind of learn, have all of these learnings and it's crazy to think that it's really, you know, my passion for bringing in the patient voice really came from the GCI this podcast, working with folks like yourselves, and it has been really influential in the way that I now do the work that I do in my professional life.
00:14:15 Nicole
I think you've been really influential though as well-being patient voice into the GCI, like uh, you know, in your previous school, all the support and the advocacy that you had for us and ensuring that we were, you know, taken care of and had opportunities got involved in it. Really just having a lot of those.
Yeah, you've done a lot for us as patients and ensuring our voices are heard.
Very grateful for the work that you have done and be really excited to see what you now continue to do in in your new stage.
00:14:55 Stephanie
Yeah. No, thank you. And I think one of the things that I also wanted to add was like I think the functioning of the podcast and the enterprise of the GCI has been made possible by so many people and I'm so grateful to those folks for leaning into this and for trusting, you know, this sort of platform and trusting this approach because I think it has really shaped the GCI in a way that is different from a lot of other research groups, you know, even folks like Almira, with her behind the scenes work on this podcast from, you know, Michelle Madison, Gavin and all of the, you know, various researchers and clinicians who are all behind the scenes supporting these sorts of platforms and supporting.
This sort of work is really kind of what has enabled it to kind of really flourish into this.
Amazing space, so always grateful for those folks. And I'm only curious about kind of where this platform will continue to grow and will only support it moving forward. Yeah, I think as I was reflecting.
Nickel I think we were talking about like you know this is the 4th year of the podcast.
There's been a lot of transition, a lot of change. Things have looked differently for me, for you, for Almira. We have Anita joining the team. But Nicole, for you, like what are what are your most memorable moments and, you know, working on the podcast. Are there any particular?
00:16:35 Stephanie
Episodes. You know what? What has stood out for you?
00:16:40 Nicole
There's so many great so. But I think some of that. One of the ones that was a real standout, like for me personally was the one with Doctor Lori Brotto, and that was. We get within the end of our first season on cancer, survivorship sexual health and mindfulness was the title of the episode, and I had shared my story quite a bit leading up to that, and I have talked very openly about fertility loss and the impact. That's not on you. That I hadn't talked about the impact on, like my sexual health and the challenges that I faced there, and you know, was something that was struggling with and was. Really challenged in getting the right, you know, supports and managing. Menopause at 33, and that episode like Lori.
00:17:50 Stephanie
I just remember her.
00:17:52 Nicole
I'd have to listen to it to remember exactly what she said, but I just like was it was very. It was very helpful in me to kind of find the language and.
Have someone you know CreateSpace to be open share and be OK with the fact that, like, this does have a huge impact and life does change very differently in a lot of different ways and that has a real impact on your mental well-being as well. And it doesn't feel like there are supports in there is a way to work through it. So, that one was one and then there was another one around the survivorship limit with Lesa Dawson. That was another one that like, just personally like she had talked about like, you just kind of getting. This mall and there have been so many things that in my own journey that like I, I just felt so validated and there was a lot of likes, you know, even though we were interviewing other people and sharing different stories or in work that some of these physicians are doing. There was a lot of like feeling and validation for myself, just going journey and then having guests, your patients and also sharing their stories and having them provide their feedback to us afterwards. So, like this was actually really therapeutic for you to hold that space for me and allow me to come here and talk them through. And not also like, not even just waiting specific patients in their episodes, but just that feedback and knowing the impact that's had on someone else and also was really memorable and really felt like, you know, this is a way that I can give back and they can do something for this community. And that's really special and it's really powerful and it means a lot. And they said this before, but like, it feels like, you know, maybe there is some reason or some purpose for, you know, going through what you've gone through to come out on, you know, the other side of it and to get back. Provides some sort of value.
00:20:22 Anita
Yeah, it's amazing how much you are being able to do that. Helps you along. And yet you think you're doing the reverse, that you're taking it from somebody, but you're not really. You're giving it back out.
00:20:35 Stephanie
Yeah.
00:20:37 Nicole
Yeah. And then I'm kind of like, all like some of I should have gone through and there's so many good. There's so many. What was the one that we did whatever during the documentary..?
00:20:54 Stephanie
You're right, they were. It was on the elimination of cervical cancer or something like that. They did a documentary and talked about the WHO's declaration to end cervical cancer worldwide and we were part of that campaign to kind of share the documentary and another crazy experience because they were all the way in Australia right on the other side of the world. So, yeah, it's crazy to kind of think back and on it. And Nicole, as you were talking, what both you and Anita were saying about community and giving back was huge, right? Because I think it's so interesting that, you know, I found this too is like a lot of the feedback, even when I'm talking about the Patient Family Advisory Council, you know, bringing patients together to talk through, certain to, to develop resources has not only been beneficial for the creation of that material, but also have had so many experiences and stories of people coming back and saying, you know, this was the first time that I've like been in this space with so many people going through the same thing. And that was in itself powerful to them to be able to kind of sit in that space and to be able to share those experiences. And then I think about like, you know, all of the different, you know, some of the really interesting episodes that we were able to do. I remember that Rose, one of the patient partners, and I did an episode in Cantonese, and it was widely popular, and it was also, you know, just thinking through that kind of components about language, accessibility and how like, you know, probably for many people in that community was the first time being able to hear a story like roses in their native language, right. And so, it's been a really amazing journey to kind of, you know, think back and reflect on all of these episodes and the ability to kind of share all of these experiences with a community and for it to just like be there, you know, now when people look back and do research, you know they might come across this podcast and those tidbits, and those experiences will always be there for people to listen back on and to kind of have that as part of their knowledge.
00:23:53 Nicole
To being able to collaborate with other groups as well in Ovarian Cancer Canada. And then we went on to the Women's Health Research Institute podcast. On creating the podcast and why we wanted to do that, you know, just being able to also jump into each other's communities and kind of on the phone that if you attach different facets so the people in the Gyne Cancer state. So those are wonderful opportunities as well.
00:24:34 Stephanie
It's amazing.
And I think this bleeds in really nicely with Anita, your background right. I'm very curious, Anita, how you maybe see your role as the podcast host alongside with your presence on TikTok and that social media platform, right? Because I think that's a huge platform.
00:25:05 Anita
You know, when I started on TikTok and Instagram, I was really doing it basically because my grandson suggested I put some of my cakes on there. So, down the rabbit hole and very quickly I got I think it was 15,000,000 views on one of my cakes that I did and I'm like OK. And you know, quite honestly, I'm actually 77 now as of last week, there's not a lot of people my age that really are engaged in social media. Why I like it so much what I do. But once I was hooked on that and I started building the platform. Shortly after that, and you talk about maybe things happen for a reason and shortly after that, I was diagnosed with ovarian cancer. They probably, you know, the algorithms on social media don't really like you changing stream unless you to have gone down that way originally, so I've added my ovarian cancer story to the TikTok and to the Instagram. And of course, they don't bring as much to it because that's not why people watch me there. But I did sign on there when I started doing that that I had. I offered to people reach out to me. I promise, I will. If you've got any kind of cancer, reach out to me. I don't know anything about all sorts of other cancers, but from a medical point of view I don't know anything except my own journey. But let me tell you, I can help you. I know I can help you think about things a little bit differently. I can help you find the questions that you didn't know you need to ask all the non-medical things that I've learned over the last two years quite frankly I wouldn't have given them up. I don't like the end of the day prognosis that comes along with this journey that we're having or that I'm having. But I have had so many Silver Linings. I've had so many wonderful people reach out to me. And I know her fact that I have been able to help quite a few people. That's all I need to be able to help a few people. I want to go into the chemo room sometimes and walk around because I had chemo yesterday. I want to go around the room and just go up to all of the people and say, did you know, can I do all of these kinds of things? And I think things like terminology. These are the kinds of things I'd like to change. I hear people in there saying they're having the red devil. This is the drug they're having. Why not call it up a pair of teeth? A cocktail? You know, some the lighter light to it than calling it the red devil. Because immediately you're scared of it momently. And I just feel that there's so much positivity that they can bring through the TikTok and the Instagram to try and help people know. Yeah, chemo's not fun. But it doesn't have to be as bad as everybody thinks it is. I can't even begin to tell you the amount of people I have told that they've been very fearful for Nausea. The drugs that we get today, you know, there's not anywhere near that like There was 40 years ago. But it's a nausea that stands out with people because that's how it's always depicted on TV or whatever. So, these are the roles I want my social media to take I want to be able to help people. I want to be able to give them the questions that they need to ask ideas, things that can help them get through things different way of thinking about things and I'm just hoping that some of those hundreds of thousands of people. Well, gain something out of it. So, it's my intent to take this wherever I can, if I can post it there whatever parts I can put up there, any snippets we get, we can put up there. Let's just, you know, wear it out get it out there.
00:29:11 Nicole
And I love that Anita, because I think like one of the challenges, you don't know what you don't know. So, you get your diagnosis and it's incredibly overwhelming. And it's scary. And if you have most that's I've never been through it you may have not supported anyone through like you literally have no idea. There's no click and book that says ask these questions when you arrive to the first appointment. That's it's all trial and error, and even those of us who have, you know, been within the health care community or in that world still struggles to advocate and find the resources and the support that we need, even just the words or the questions. So, I love that you are helping and sharing your knowledge because there is so much value and like I can only imagine how many people you will touch and support during do that. Like I had somebody like connected with right early on and she was my resource through my whole journey because she had just recently gone through it and was very similar and without her support it would have been so much harder, and it stumbled on a YouTube series of someone who documented her journey. She's taken it down now, but those things were also like so incredibly helpful. And we are looking to social media to find answers these days like that's why we are learning, and we are connecting. So, I love what you've built, and I love how you know, perhaps we can use the knowledge that you have of leveraging to talk in Instagram in the way that you do to, you know, support the podcast, but then you know, can we help share more of what we're doing in this space through those mediums as well would be wonderful to see.
And there's some of the stuff that we've done with the GCI like we don't find out about like we hear about something from someone else. But you know it depends on who you saw, or you know what facility you were treated in or what doctor you had, or you know timing in like what you get access to and so closing the gap on educating people on what is a β¦. as you go through your journey, it's just so critically important to feel, you know, supported and not just like while you're undergoing treatment, but it's after piece too and you are very well supported through a team you know when you doing any sort of treatment, or at least I felt like through, you know, making on radiation and surgery you had β¦ people and then you're done and then that's when the real impact of what you've been through and it's not like a job, you know, when I was going, oh, that was.
00:32:15 Anita
That's not my moments ago. This is a job.
00:32:19 Nicole
Yeah, it's full-time job and it's very schedule and your day is filled and it's easy to kind of get into that routine. But then afterwards you're you know regular worlds and everything's different. And then the, you know the impacts of what you've gone through starts to show and not can be a very lonely and challenging space to be into.
00:32:44 Anita
Well, I'm aspiring.
00:32:47 Stephanie
Love it. No, I'm loving where this conversation is going. And I think even in the last little bit we talked so much about kind of what are some of the hopes for the future of this space and how to kind of continue building connection and education and closing the gap on all of those pieces. And as we wrap up here, I'd love to for the both of you to just share a little bit, you know if it's a little bit just about, you know what your hopes are for this platform and you know as the platform continues on where are you hoping to take it?
00:33:33 Anita
Well, personally I just want to take it as far and wide as we can. I seem no end to where we need to go with this.
00:33:43 Stephanie
Yeah.
00:33:44 Anita
I think that's what we have to do, and I don't see any reason why we can't do that collectively what it means.
00:33:51 Nicole
I agree with Anita. I think we have created over the last four Seasons in four years a lot of like really wonderful, valuable content. And we've reached people all over the world. But I do feel like, you know, we've scratched the surface on how many people we could reach. And I think there's a lot of avenues that we could take. So, below that, I don't think they're like that. I don't think there's any end to it. I think there's a lot of β¦
00:34:30 Anita
We've got to take it as far as we can until there's an end.
00:34:38 Stephanie
No, I love that. And I think that's exactly what the podcast like will benefit from. There's that energy and that desire to, you know, continue growing and to continue building it out continue, you know, sharing new knowledge, sharing the way that we do things in ours sharing the way that you know different services, new information. Every day I know that you know the researchers at the GCI are discovering more and more about gynecologic cancers, and there's always more information that can be shared. So, I'm really excited for the future of the GOSH Podcast and again welcome. And thank you, Anita for stepping on into this role and I'm really looking forward to where the both of you will take the platform and continue sharing this really valuable message and information on those ecologic cancers.
00:35:49 Anita
Thank you so much. Thank you for entrusting me with this partnership.
00:35:46 Speaker 4
Of course, you're.
00:35:46 Nicole
Very excited to continue on this journey with you, Anita. And Stephanie thank you for going on this journey with me for the last four years.
00:35:59 Stephanie
The last four years, it's been crazy, hasn't it?
00:36:05 Anita
Yeah, maybe.
00:36:07 Stephanie
Yeah. Well, thank you both so much. It's been a real pleasure and a real journey. And I will always be behind you both to your leading and rooting for this this work because I wholeheartedly believe in it.
