In this two part episode, Nicole continues sharing her cancer journey and encourages other patients and patient supporters to advocate for themselves, think of all the questions you want answered (big or small), and not to shy away from asking. This is your journey! You are the one who will live with the impacts, you have a say!
For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca
Where to learn more about us:
Twitter - https://bit.ly/3jsViHM
Instagram - https://bit.ly/3dRQsCF
Facebook - https://bit.ly/3knUgOw
In this two part episode, Nicole continues sharing her cancer journey and encourages other patients and patient supporters to advocate for themselves, think of all the questions you want answered (big or small), and not to shy away from asking. This is your journey! You are the one who will live with the impacts, you have a say!
For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca
Where to learn more about us:
Twitter - https://bit.ly/3jsViHM
Instagram - https://bit.ly/3dRQsCF
Facebook - https://bit.ly/3knUgOw
Last time on the GOSH podcast…
Nicole
Well, they're the doctors and they know best when you know, really felt that maybe I wanted to know more or why couldn't I do it a different way or, you know, whatever those questions might have been, I just I shied away from pushing too hard for asking them.
Introduction
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 treatment outcomes.
Our podcast is produced and recorded on the traditional, unceded territories of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and səl̓ilwətaɁɬ / sel̓íl̓witulh (Tsleil-Waututh) nations. It is produced by the Gynecologic Cancer Initiative, a province wide initiative in British Columbia with the mission to accelerate transformative research and translational practice on the prevention, detection, treatment and survivorship of gynecologic cancers.
Nicole
Hi, I am Nicole Keay.
Stephanie
And I'm Stephanie Lam,
Nicole
And you’re listening to the GOSH Podcast
That would be one piece of advice I'd have as well, is to really think through what those questions are, write them down, and don't be afraid to ask and then challenge them.
Stephanie
Yeah, I think it's so difficult sometimes to be your own health advocate when it comes to something as scary as cancer. And, you know, I think it's very common in our society these days to really value the wisdom and the knowledge that our healthcare providers provide. But at the end of the day, you're right, you know, the patient and you as an individual, know yourself the best. And, it's important to convey that to your healthcare team, and kind of have those conversations in a way that will be beneficial to the patient. But I also can understand how difficult that might be and, even thinking about patients who might not speak very well English, or have absolutely no understanding about the health care system, you know, you kind of take it as, as it comes. Right? You're kind of on survival mode.
Nicole
Yeah, absolutely. And I think, you know, when it comes to trying to beat cancer, your team is like, “Okay, so this patient has cancer, we're going to do everything in our power to ensure that we've rid their body of cancer, and then they’ll be free to keep going and live their life.” And you as the patient is like, what about this, that? How am I gonna feel? and what's gonna happen to me afterwards? And, there's that whole patient perspective. It's not that doctors aren't taking that into consideration, it's that their primary focus is to rid you of the cancer. They're looking at that from, you know, statistics and risk and best course of treatment. And, for me, fertility was the number one thing. And so, I did early on push about: “well, what about my fertility?” And it was something at that time, I didn't need to worry about, because the treatment was just surgery. But when that changed, there wasn't enough time in between to really learn about what is fertility preservation. What does that mean? Okay, there's different clinics in the city, who's the best clinic for me? I didn't have that opportunity. And I, from what I understand, that's quite common with younger cancer patients where you have a very short window to go get it done. And when it's something that is so important to an individual, I don't think it should be taken lightly. And those are some of the areas that I wish I had challenged a bit more and educated myself enough to say, “actually, I'd like to do this now. Just so I'm prepared in case”. Because where I'm at now you know, I have complete loss of fertility. So there's no going back. And, that's been really hard and really hard. I would say that it's been the hardest challenge. That I've had is coping with the loss of fertility.
Stephanie
Mm hmm. Yeah, I think there was a really great quote that you shared at the Survivorship summit that still really stuck with me. You know, a year later, I don't know if I can remember exactly what it is. But oh, here, I found it – “Some researchers argue that the definition of trauma should be expanded to include the psychological and emotional response to not only physical threats, but threats to deeply held expectations of life.” And that was said by Regina Townsend, in the New York Times.
And I think when you had said that quote, it just struck so strongly with me, because, there are some things, I think, especially with women. With women, we have these certain expectations about how our lives should be and this is stuff that's been ingrained in our minds since we were so young. And to have that being taken away, is traumatic in itself. And I think sometimes, it's really difficult for people to associate that with trauma. And that that is a real response. It can be applicable in so many different ways that we don't come to think about that, and realize that these big life events have a huge impact on how we see the world.
Nicole
Yeah, absolutely. And, you can read from other, I'm sure men as well, but I've had the experience to have these conversations with a few other women and have read quite a bit on other survivor stories. And some will talk about how they didn't feel they wanted children, or they were unsure. And then after going through their treatment and becoming infertile, that finality of it, then brought on the trauma and, and the loss.
And there's a real grief with that. I think as someone going through it, it's hard to comprehend, because you're grieving the loss of something that really never existed. But it's also really hard to explain to people. Because I think unless you're there, you can't really experience what that pain is like. And it is very similar to losing something or going through the loss of a loved one, or a job, or whatever it might be. You know, that, that experience…that trauma is very real. But we just don't typically think of it or speak of it in the same type of way.
Stephanie
Yeah, I totally agree. I think when I first heard it, I thought of, I tried relating it back to an experience that I've had with my parents getting divorced at a younger age. My parents went out one day when I was 15. And, you know, we could say that that is adolescence, and you kind of still had your childhood and stuff like that. But I think having your parents split up at that age, you just, you never know, what life would have been like had they had stayed together. And that in itself, is trauma in a way, and it's something that changes how you how you see life and how you live life on a day to day basis. And I think it was such a powerful quote. And it changed how I see survivors and people who have gone through so many different things with life because it just conceptualized the word trauma around it for me.
Nicole
Yeah, absolutely. And I think for others, not speaking to those who have gone through cancer, but other sorts of trauma that have altered their course of life the way they thought it was going to be. I think it speaks to all of that because I feel like myself, very much so, but I feel like for others as well, that those expectations or those beliefs that we have for ourselves…Once they're totally rocked like that, the foundation of what you thought my life would grow to become or who I am or how I fit in this world is completely shifted. You know, there's the trauma within that. And then there's the grief to try and move through it and overcome it, and then figuring out…now what? You know, where do I fit in? How do I still achieve what I what I want for my life? Is that even possible? You know, there's a lot of different factors that go on so many different levels.
Stephanie
Yeah…And it's not a it's not like a short journey, either, I assume.
Nicole
No, I wish it had an end date where I could say: “This is when it's not going to hurt anything” Or “This is when it's going to get easier”. And that doesn't seem to be the case. And with my journey, you know, I was so fortunate to be able to do the fertility preservation. And there's a really great organization called Fertile Futures in Canada, which raises money to help provide grants for young people who lose fertility, through cancer treatments. So, I was able to get access to that and with the help of my parents make that possible. And that really did provide hope for me…throughout my treatments, and into the first few years…because it just that the little preservation to know that those nine eggs were sitting in a freezer, just waiting, you know, really provided so much in terms of like motivation and hope and life for the future.
And, unfortunately, they weren't viable. So you know, that that was a whole other sad reality to them. You know, more trauma to have to go through. But just having that ability, I think it's really important for young people to explore whether you think you want children or not, because I think it's such a huge decision that some of us just know, and others, you know, it might be the right time, the right place, the right person, that you really feel that you do want to take that journey on to become a parent. So I would encourage any young person to explore preservation and even go through with it, even if you're not sure. Just to give yourself that option so you don't regret that down the road.
Stephanie
Backpedaling a little bit. I think you mentioned a little bit about health care team providers and you know, what you mentioned about that lady at the BC Cancer who chatted you up asking you about know what, what department you work for, and also kind of being your own health advocate. What do you think is one thing that health care providers need to keep in mind when providing cancer care to young patients in general, and also young patients who might be looking at fertility options, like you were?
Nicole
Mm hmm. I think it's really taking that whole patient perspective. Getting really curious about what matters to the patient, what's important to them. And especially as a young person, what are their life goals? Or what are they hoping to have their life? What are they hoping for themselves? Like, I think that's really important. And I think a lot of doctors are really great at asking those questions and incorporating them. But I think sometimes we move so quickly, in this space because of the nature of the illness, that it isn't always the top priority. And I think treatment outcomes and treating the person with the cancer is really obviously the number one thing. But there's more to that person than just that disease itself. And the impacts are so long term in so many of the different factors - emotionally, physically, socio economically, financially - like it hits so many different buckets that I think we really have to try and slow down a little bit. Just to understand the individual patient, what matters most to them, and how do we help support them to thrive in their survivorship to continue living a happy, positive, healthy life post cancer treatment.
Stephanie
Yeah, I think that's such an important point. Health care teams, you know, it's not just you're not just treating the one disease, the patient is a full person that has all of these other elements related to their well being. And, the time that you spend inside the Cancer Agency is relatively small, compared to all the other time that you spend at home at work, and other elements of your life. I am curious, though, how well supported do you think you were, in terms of getting fertility advice or care from BC Cancer?
Nicole
Ummm…I wish I have pushed to explore that, right when I got my diagnosis. And I get that they don't want to put added stress on you if you're not going to need to go through that. And then, why start exploring it? But I feel like something so important like that - having the opportunity and the time to meet with a fertility doctor to really understand the options. For most young people, that's the first time they're exploring the fertility world. And so, you know, you may know that, yeah, I can freeze my eggs or a little bit about IVF, or. It's a very, it's a very close topic, people who are going through fertility struggles, do not speak about it very often. So I feel like as a younger person, our knowledge and experience in that space is very limited. So I wish that I had been given the opportunity to learn about it earlier, and then been in a position to make the best choice for me. Maybe….and, it's probably unlikely that I would have been able to do this…But I may have been in a position that, you know, regardless, I could have frozen some eggs right off the bat. There's different options that I think you should be allowed to explore right off the bat. I didn't have the option to choose the clinic… I didn't even realize options were available to me. I wish I had been able to make the right decision for the right clinic that really supported me, or, you know, was the right fit for me. Support isn't really the right word, but the right fit for me. And then the other thing is, the charity that I mentioned about Fertile Futures, I found out about that in a complete fluke. I was working for a foundation and Telus was one of the…we had a gala that we did once a year, and Telus was one of our sponsors for our Gala. And so my contact over there, obviously worked with a number of different charities on their events. And had a team member named Nicole. And she copied me in on an email by accident.
Stephanie
Wow.
Nicole
And it was about Fertile Futures about their gala that they had just had. And so I reached out to her and I said: “I think I received this email in error. And thank you, though, for including me, you have no idea how grateful I am to learn about this organization”. And I didn't explain why I just kind of left it at that. But that is what connected me to learn about it to know about it. And it was a total fluke accident.
Stephanie
Wow, that is crazy.
Nicole
Right? Like the world works in various ways, right? Yeah, it's just it's so crazy. But you know, that's something that you know, I think of when you arrive at your first appointment, you're given this package that includes all types of information about cancer, about the facility itself, where you can go for different types of support. But that was one area that I feel like would be a really easy add for young people. Like what to know about your fertility, and, you know, organizations like Fertile Futures that exists to help people. Because it is not something that's covered to your medical, that's an expense that you incur yourself so that's one area that I think would be a really easy way to help young patients.
The other thing is, that we didn't touch on much, but menopause. Going into menopause early, was a real, real challenge. And there's not much literature that I could find for someone with my experience and my age. You know, we, we think of women, who are of a certain age and naturally moving into it, and they're cranky. And so all of the symptoms that I started to experience, a couple years outside of treatment, I really didn't equate those to menopause, when, in fact, you know, I wasn't getting the right hormone replacement therapy…I needed to up that. And that made such a difference. But that was a whole other area that was just a complete anomaly to me and I knew nothing about. I didn't know where to go and really access help. So I think there could be more done in that space as well.
Stephanie
Yeah. Yeah.That's very interesting. I think we'll definitely need to have maybe your fertility doctor come on to this podcast and give a little information about that. I think you're completely right, you know, know, that whole space is a little, you know, empty. I don't really know much about that, there's not much conversation about that. And in definitely for young people, there are a few topics that are a little bit more accessible and are talked about a lot more, but fertility is definitely not one of them. So, we'll definitely need to find someone to come on the podcast and share a little bit more information with us.
Nicole
Yeah, absolutely. I think there's a lot of learning that they could provide and the knowledge that other young patients could take away or support people who might listen to the podcast to provide that knowledge to, you know, friends or family members.
Stephanie
Yeah. Okay, so diving into the last bit of this episode. You know, I've met you through the Survivorship Summit. And actually, I don't remember…who connected you with our group? Do you remember? It must have been through the Ride or something.
Nicole
I think it might have been through the Ride, because I rode with OVCARE. And so, I think indirectly through that? I want to say…And it feels like it was so long ago, but it really was not that long ago.
Stephanie
Yeah, I can’t even remember now
Nicole
No, I came initially to…I can't remember what it was called…but we did the walkthrough of the lab.
Stephanie
Yes. Yeah. That's the lab tour we did with the Patient and Family Advisory Council.
Nicole
So…I think that was the first time I met you.
Stephanie
Yes, And then there was the Summit, the Survivorship Summit that we did…Yeah. And now we're here doing this podcast, which was an idea from the summit. That really was a great idea. And, I wanted to ask you a little bit about your experience with patient engagement work. You know, from the very beginning, just being on that tour to presenting at the Survivorship Summit, which was basically, for folks who don't know, it was basically a day long Summit where we brought together researchers and clinicians and patient partners to start thinking about what the next steps of survivorship research could look like for gynecologic cancer patients… to now, you're working on this podcast and you're helping us with another grant that we're submitting to create some knowledge translation tools. So How would you say patient engagement affected your relationship with your diagnosis and your survivorship journey?
Nicole
Yeah, it's a good question. It's really surreal that I am doing this work. You know, I think early on I wanted to try and get involved in patient engagement in some way, or advocacy or lobbying or whatever that was gonna look like, I wasn't sure. But I just felt like, I didn't go through this for nothing. And, you know, so there was a very direct choice… I could ignore it and pretend it didn't happen and just move on. Or I can try and do something to hopefully impact other women or young cancer patients who come up behind me. It’s like if I impact one person, it doesn't matter, just something that makes this journey worthwhile. And so it's been, in a way I would say, it's helped me be motivated, it's helped me have a focus to, or even a purpose. I would say that, I've gone through this journey, and now I get the opportunity to give back to others. And in that, I feel, not that it takes some of that pain away. But I think it helps place it somewhere. It doesn't have to be all bad, there is some positives here that I might be able to do something good.
And I think it's just helped me stay motivated, and stay out of that dark place that I think is really easy to go, and is a really conscious choice not to go, if that makes sense. And I've learned in this short time so much…but also realize that I have so much to learn. And that you know, even within my own little experience, I've questioned whether it is even worth while? Does anyone want to hear my story? Does it even matter? Where I've kind of felt it's quite insignificant. And like, to be totally honest, I was so nervous at the Survivorship Summit. That was really the first time I'd spoken to a larger group of people who I had really seen as way above me in terms of knowledge. And, just me speaking to clinicians is like mind blowing. I just felt like “Who am to think that I can come and share my story and offer value?” And, and I've been realizing through all of this, that every little story matters. And that patient perspective is just so important. Not just from the clinician side, but the researcher side, and bringing us together, that opportunity has just been really eye opening to me and different perspectives thrown my way. Getting to understand a little bit more of your research and what goes on there. And I just feel like I have, it's opened me up to this whole world that I have so much to learn, and that I'm really excited about. And I hope that I get to continue to do work that makes an impact.
Stephanie
Yeah, I mean, I think I am a huge advocate for patient engagement in both the research field and the clinical field. Because, you know, there are some things that simply only the patient perspective will be able to provide in terms of next steps, how to improve patient care, how to make it more accessible. What are some of the areas which we need to learn more about? And like focus our attention on and like you said, you know, with even what you mentioned earlier about providing more information about fertility or early menopause. We have all that information stored away in the back of our minds as researchers. And it can be as simple as having a few extra contacts adding in an extra page. But unless researchers provide an opportunity for patients to come forward and share what is needed, what is important, how do we make this experience better? It's essentially impossible to have really truly patient centered care in our systems because you know, the people creating the systems are not patient. They do not know what is needed for the patients to thrive. So I think it's so important. And I think, you know, this project with the podcast is just one of the many projects that you have proposed. And, you know, I can already see so much value in having these stories and sharing these perspectives that will provide comfort to people who listen to this. And any researchers listening to this or any clinicians listening to this, it will offer another perspective that they may not be able to get from their day to day clinical interactions with their patients.
Nicole
Yeah, absolutely. And I would really encourage patients to seek out opportunities or to ask how they can get involved. And I think, you know, Debra spoke to this on the episode we just recorded. Her two different experiences…her first journey where she wasn't ready to do that, but now is very much an advocate in the second. And I think you do really need to be in the right place. But I would encourage those who may be felt a bit like me, where you know, “what value can I really add?”…to step up and, and see how you can get involved. Because you'll find that you can add a lot of value, and it's very rewarding once you get going in it.
Stephanie
I guess, one last question I would, or maybe the second to last question. What do you think is something that researchers should keep in mind when engaging with patients? What is like something that we should be conscious of when doing patient engagement?
Nicole
I think there's two things. Our stories may be shared, but they're also very individual and unique. We help come from different backgrounds, different experiences, even just you know, age, or gender, we all come from a different place. And so not to take us as you know, cervical cancer patients as a whole. There are going to be so many different lived experiences within not, and I know that they'll never hear them all, but to try and seek out those different experiences. Because I think it's really important in terms of, informing and shaping how we provide treatment and support moving forward. And then I think the other one is just to be really respectful of where people are at. I think this journey, I can speak to it being very much up and down. And so, there's probably times where I am motivated. And there's other times where, something might happen, or I may be struggling a bit where I'm not as motivated to be involved. And I think Deborah spoke to this very well, is I think we have to be respectful. Be respectful of that is, you know, it's not a black and white journey. And regardless if you're in active treatment or in survivorship, it can go up and down. So I think we just have to be mindful of that. And ensure that, we're allowing people to be present when they can and take a step back when they need to.
Stephanie
Yeah, definitely. Yeah, those are some really important insights for any researcher who are looking to get involved with patient engagement and being flexible with our patient partners and not overburdening, asking, being flexible. And all of those are key tips when working with patient partners. Okay, final question. What is one thing you would tell a patient who just learned about their cancer diagnosis yesterday? One key lesson…
Nicole
One thing?!?! I feel like there's so many… I would say, to try and stay present. To not go down the rabbit hole of what could I have done differently, or what's going to happen to me? Especially nowadays, I think it's really easy to go to Dr. Google and type in “cervical cancer” and just overwhelm and bombard yourself with so much. I think just trying to be present and sit in the painful, shocking, uncomfortable space that just learning that you have cancer is and not go too far down any of those rabbit holes, because who knows if you could have done things differently? Who knows what's going to happen in the future? I think it's just taking it one day at a time taking it minute by minute if you have to, and wait to hear, you know, wait to get to that initial appointment and hear from your doctors and get the full diagnosis and just stay present and wait. If that makes sense.
Stephanie
Yeah. That is some perfect general life advice. I think anyone in life can learn from that.
Nicole
Even more so right now, during COVID. I read a really good quote today, actually. And I thought it was really interesting. Just speaking to this whole, COVID world, but also, I think a little bit about what I spoke about in my story. But it is by a gentleman named Dave Hollis, who is the CEO of the Hollis company. And he said “In the rush to return to normal, use this time to consider which parts of normal are worth rushing back to.” And I thought that was really good. Because when you take stock of how you spend your time, or what you're truly missing right now, I bet it's different than what you were doing, pre COVID. Like, if I really think about “you know, it's like, I don't have time to do this, or, you know, I don't want to do this.” And then I'm looking at my phone. And it's like you spent three hours on average this week, scrolling on maybe Instagram or something like, you know. And I think a lot of people are missing their family and missing connections. And you know, I think it's a really interesting, it just kind of hit me. I think it's something a lot of people have been talking about and thinking about. But was also very true for me, coming out of my cancer treatment as well.
Stephanie
Yeah. Well, I love all the quotes shared today. Okay, well, I think that is a wrap. Thank you so much, Nicole, for sharing your story and inspiring just this podcast in general. I think, these stories are what we hope to continue sharing at the GOSH Podcast. And you know, you always so eloquently share your lessons learned and your story. So thank you so much for sharing and doing this with and doing this podcast.
Nicole
Well. Thank you, Stephanie. Thank you for saying that. But also, thank you for being a champion for that. Because I just threw this out as an idea at the Survivorship Summit. And you came up to me right after and we’re like “I really like that, I'm gonna work on it.” Which was amazing from that time in November to here we are now in September. And you were a real champion for it. So I'm really grateful to you for that…to help truly bring it to light. If I tried to do it on my own, who knows where I would be right now? So thank you for that. And so happy to be here and co-hosting it with you.
Outro
Thanks for joining us on the GOSH podcast. To learn more about the Gynecologic Cancer Initiative and our podcast, make sure to check out our website at gynecancerinitiative.ca