GOSH Podcast

Episode 16: Creating Community

June 28, 2021 Gynecologic Cancer Initiative Season 1 Episode 16
GOSH Podcast
Episode 16: Creating Community
Show Notes Transcript

Nancy Cleveland joins us again on the GOSH Podcast! Today, she shares her appreciation for the work of the Gynecologic Cancer Initiative and other organizations for always centering patient voice. She is thankful for the various opportunities and resources patients have, such as the GOSH podcast. She discusses the importance of sharing community with those going through their cancer journey and also key lessons she has learned along the way.   

For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected]ncerinitiative.ca 

Where to learn more about us: 

Twitter - https://bit.ly/3jsViHM 

Instagram - https://bit.ly/3dRQsCF 

Facebook - https://bit.ly/3knUgOw 

Stephanie 

Last time on the Gosh podcast. 

Nancy 

When I was having chemo myself, I know that someone before me had had to go through a trial in order for me to be at this place to be getting rid of the cancer. At this stage of the game and so itself is really important to get that. 

Stephanie 

Thanks for listening to the GOSH podcast. 

Gosh stands for the gynecological oncology Sharing Hub, an open space for real and evidence based discussions on gynecological cancers. We'll share the stories of gynae cancer patients and survivors, and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecological cancers. 

Our podcast is produced and recorded on a traditional unceded territories of the Musqueam, Squamish and Tsleil-Waututh Nation. It is produced by the Gynecological 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 gynecological cancers. 

 Nicole and Stephanie 

Hi I'm Nicole K and I'm Stephanie Lam and you're listening to the gosh podcast. 

Stephanie 

I am really curious about um, kind of where you are right now. UM, so before before we started recording we were talking about the survivorship summit, which is where I initially met you, Nancy, and where Nicole also initially met you. So so, of course, that that that was at that point in time. I think it was around November 2019 and a a while ago when we first started having conversations about survivorship and really shining light on this important topic that often gets neglected in the Cancer Research environment. But I'm also very curious to hear about how your survivorship journey has been going, and I know that you are on a PARP inhibitor right now, and you're probably still getting still being seen regularly at BC cancer, but how beyond that? How has your survivorship journey been? 

Nancy 

Well, it's amazing and it comes back to team and earlier on when I forgot to say this part in my journey part. 

Uh, a friend of mine had been diagnosed with friends from high school, had been diagnosed with ovarian cancer a while back and so she had gone through the same treatment. Interestingly enough, very interesting, very similar stories in that her cancer was found from surgery. Same sort of things. Same stage. 

And she ended up having the same treatment. So having somebody walk alongside me, having been through it was incredible. Yeah, incredible. Yeah, so that that part of partnership started really laid back then. 

Uhm, and the unfortunately her cancer came back five months later. 

She had radiation and then right now she has been almost 10 years, cancer free and again that broke into that hope for me because I saw that. 

And another I just like to share another story to have hope because I think this so much with this cancer is it can feel so hopeless. In my first treatment. Actually, this was really. 

Well, I was you sit there and you talk to people. You share stories and so this girl came in and she was back with a female and she was I shared my story and she shared with her and she said, well, you know I had breast cancer stage 4C. I was given six months to live. I had three tumors that were in my brain. 

And she said, well, that was 18 years ago. 

And so I just think I'm having sense of hope, right? We just don't know. And just with the research and things that are going on with the Gosh podcast, I think just being part of the survivorship summit, it was just so interesting to really know more. 

Like I said earlier, I'm really a lifelong learner. I love to learn and I love to give back. And so since I have been in remission just through friends of friends and I have been walking alongside other ordering counts to patient. 

Uhm, not knowing them at all before, uh. 

Well, but it's been such a kill, you know, to be able to walk alongside them, and they become like they are friends. 

But they almost like my sisters because we have this shared journey, and so that's a lot of work. I've been putting all the time and and it's and certainly no effort. 

It was just a. It's just a really lovely lovely patient partnership I think. 

As well, I'm definitely thankful for all the different things that has been going with the GCI,  Yeah, gynecological cancer initiative, and again, there's just so much excitement and hope in that in that doctors then the researchers want to talk to access patients like. 

That's so how well you know and and just being part of that has been just such a beautiful thing. 

Nicole 

I feel like you, when you're on the patient side, you don't realize what else and all of what is going on. 

So, uhm, once you are able to see a little bit of that and get involved, it's just like for myself, I've I've wanted to know more. And you know, how can I get more involved and you really start to see that your voice is really powerful in this whole thing, and there's a lot that you can do to contribute, you know as as a patient partner and and doing patient engagement work and it's really encouraging. 

Nancy 

Well I think too, Nicole you know the podcasts that have gone before me had been so incredible, like so informative and really wonderful. 

Like I have a daughter and she's 28 and yeah, I just think for her it's just so important that we have this information out there and although ovarian cancer, they say is rare, I don't know. I have very different ladies that I'm walking alongside right now, but I just met sine November December. So I I don't know. I just think it's really important to be a patient partner to be giving back and and just the opportunities for education that really gives. 

So I'm really thankful for you guys and what you guys have done with the GCI. Like it is so amazing. 

And I'm so excited and again it gives such hope and it brings back again community. And that sense of community that is so important for all of us. 

Stephanie 

I definitely resonate with everything, and I mean as someone who definitely doesn't speak from a patient or survivor perspective I also see so much importance in having the patient voice throughout everything that we do and really building those connections. And as you mentioned, relationships in teams and I think that is at the core of the Gynecologic Cancer initiative, and you know, really, bringing people together to advance this work and allow the work to go even smoother and to grow, to grow even better so that it can ultimately benefit the people in BC, across Canada and around the world, so definitely. 

Nancy 

Definitely absolutely. 

Nicole 

Yeah, and and Stephanie is such an advocate for the patient voice though, which I think is really, really important for you know, both you know. 

I don't want to speak for you Nancy, but that piece I've like I've been very impressed with how important that is to you and how you're able to bring so many patients together and make sure that they are involved with everything that the GCI does, which is which is really, really amazing, and you really make us. 

I feel that that we are important to this process, so you know I'm I'm super grateful to that. And thank you for that, for for for leading that and I, I thank you, Nancy for saying that about the podcast, because I think you know one of the inspirations behind it was that community, because like you, I had found some other women who were, you know, similar journeys to mine, and those connections were so valuable and just. 

You know I had friends and family that were around me that were wonderful, but those connections of women who knew and were going through it or had been through it were just so invaluable. So you know, the hope was we could use this tool, the podcast tool to kind of create that and so I hope it's doing that for other women or or helps provide some of that community if they're not able to find people you know individuals to connect with that maybe we can sort of create that in this space. 

Nancy 

Oh, I think so. I, I agree with everything you said Nicole like I think when I think back on, well I guess it was. 

When was this divider ship center that was November 2018? 

Stephanie and Nicole 

2019. 

Nancy 

All the days go together with COVID. 

But Gavin, I think that to that to where you guys are with the GCI and the podcast. I'm just blown away like I wish I'd had this kind of information because you start to start to go down rabbit holes of Google and and that can be very scary, because there's a lot of stuff out there that you know is not. 

Nicole 

It is. 

Nicole 

Really very good, but I'm not sure how true. 

And to have something like this that is well researched and well, well done. It just it's such a gift and a blessing to all of us. 

You know, it really is, and yeah, so you keep keep doing what you're doing because I think it is just such a powerful, powerful tool and I think the key thing is to really try to get it out there that I don't know how many people really know, but we want to be making sure that definitely people that are because I didn't have any tools once I was diagnosed, I just started to dive into what to Google and that's never really a good place to be. 

Thankfully, because of the survivorship summit, I heard about Facebook groups. 

When those were good, but some of them got to be really negative and that she was my kids that just didn't wanna. I don't want you to be on that anymore, so I didn't so, but the parp inhibitor one I think is really important. 

You're getting back to the parp which I think we're going to see more and more in ovarian cancer. 

That particular Facebook group is really good, and it's only interesting thing is that there's different parts that everybody is taking and different stuff. 

So, but the all these women, it's worldwide. It's really quite remarkable and just to see the face of ovarian cancer change because of the parts and that positivity there just brings hope again right, that wonderful word, hope, you know, and I just believe that in all of my being. 

Stephanie 

That is amazing. Nancy. Thank you for sharing all of that. Uhm, I am also very curious. I don't think this is a question that we've asked our guests on the podcast before, but uhm, how has the COVID-19 pandemic impacted your journey? I mean, I know the pandemic has been very challenging. 

Nancy 

For many individuals, regardless of whether or not you're a cancer patient or a cancer survivor, but we do know that cancer patients are disproportionately impacted by the virus. So how has the pandemic impacted your journey? Has it has it impacted you in any way? 

 Nancy 

The COVID journey has been a really interesting one for me as a cancer patient. Most of my treatment will actually all of my treatment was officially done that as in the chemo and the surgery and all of that stuff had been done. I was still being seeing I remember what if it was right now. 

But I think it was monthly and then I would have to get the park at upstairs on the 4th floor. 

So I would have to still go in together and and then wait the 2 1/2 hours for the driver to come back and then I would have an appointment with my oncologist and the drug news. 

And then I would have to wait upstairs for the medication. 

So when COVID came up, actually it was it was much better. 

Because I now can get my blood work done locally. 

Which was great. 

I could make an appointment, arrive, get it done, and then I can actually see the results myself and that was really very great. 

Really great for me to be able to see it right away, rather than that waiting that waiting can often give way to uncertainty feels so that blood work and then to have them phone and they had done like this again. It was great and I did go into the cancer clinic for a few of the drug trial situations I actually, in September I had I should actually talked about this do this in September. I got a call from my oncologist saying I have good news and bad news. 

Uhm, the good news is that you will still be receiving the parp, but the bad news is that you're not involved with the drug trail anymore. And I was like, wow. 

It ended up being that I had been on the placebo so I again, So being on the parp now, the post COVID B drugs arrived to my door, so I don't think it goes through Bayshore, which I have no idea how this all worked out, but it's the amazing drug company that has enabled that. 

So they arrive at the door, so COVID actually hasn't has affected me positively more than that. But you know, I think COVID has been the great equalizer, you know. 

I think we've seen the best and worst in humanity, but at the same time when you think about the vaccine, we had the greatest and best minds in the world coming up with this vaccination program. 

And I see that so much as a comparison with what is happening with cancer too. You know, I just think there again, the certainly BC cancer is the team approach and I was just actually had an email from somebody in the States and I guess there was a. 

Uh, a new, uh, uh, Hunter Goodwin who just paid 250 million dollars for five cancer institutes in the state to be working together for pancreatic cancer and ovarian cancer, and two other cancers. 

And so again, and what that money is going to be doing is working together to be bringing around, hopeful new progress in collaboration, and I think that came out of COVID. You know, the that real ability for us to see what it's like when everybody works together. I think there's such power in collaboration. 

Nicole 

Well, that's really why you know when we had Doctor Stewart on when we kicked off the podcast, he spoke about that and the importance of that and collaboration for, you know, the basis of forming the GCI. It's so true, it's, you know you. 

Can make so leaps and bounds forward when we're all working together, right? 

Nancy 

Yeah, we're stronger together than we are apart, absolutely. 

Nicole 

Yeah, absolutely  

 Stephanie 

Yeah. 

Absolutely.  

Yeah, I mean, it's amazing that you know I'm I'm really glad that to hear that COVID has in some ways positively impacted you and your care. 

And I think you know, sometimes it's really easy to be bogged down by the negatives and feeling, really, you know, again, hopeless about the COVID-19 pandemic, but I think as you pointed out so beautifully there has been a lot of innovation. There has been a lot of changes and advances to policies that normally would take a very long time, you know, just seeing the rollout of digital medicine and having the ability to, you know, just call your doctor and not having to take the whole day off to go see your GP has been enormous and has been really. 

Nancy 

Oh sure. 

 Stephanie 

Game changing for many people and again that whole aspect of collaboration. No, really wouldn't have wouldn't have been able to. 

Sorry the the aspect of collaboration has really been pivotal in the pandemic and the quick responses that we've been able to see in the vaccine development and all of the research really has come down to everyone putting collectively, putting their minds towards one single goal. So yeah, that's absolutely beautiful. 

Nancy 

And what a beautiful model for the world, right? The whole world is involved in this. It's not just us and the states, but the whole world. 

You know, I think just working together. And yeah, I think it's actually. It's not that I'm sure COVID has affected and in fact one of my friends that I'm walking alongside she’s in the midst of chemo right now and she has to go in by herself and. And so there's all these things but. 

Definitely BC Cancer or the times that I have been there has been so extremely focused based on the parking has been free now, which was mainly the problem. 

But but I thought that you know that it's just a it's been. It's been good. 

 Nicole 

It'll be interesting to see what happens. I mean, you obviously highlighted some some key benefits that you've experienced being able to receive. You know the drug at your home, Go to your local lab to get your work done. If any of that stuff moves into what our world will look like, post COVID. 

Right, I think a lot of businesses and other industries are seeing and looking how they're going to shift, how that workflow goes, and it'll be interesting if healthcare does that as well. 

Nancy 

For sure. 

Stephanie 

Yeah, that's really important. OK, so that was such an amazing discussion, Nancy. I'm so completely kind of. 

At awe of how hopeful and all the hope that you exude throughout this entire conversation. So thank you so much for that. 

I guess our last question that we you know tend to ask is are our guests as you know, if you were and and you are partially doing some of that with your mentorship and walking the journey with several people in your life. But what would you tell someone who is just starting out their journey right now? 

What is one thing that you've really learned throughout your journey that you would want someone to know at the beginning of their journey? 

Nancy 

Yeah, that's a good question, really. Good question. I think if you think there's something wrong. 

Keep exploring it. Keep advocating for yourself because there were many times I remember going into my GP and saying you know what I feel like such a hypochondriac and he said Nancy absolutely not. We will get to the bottom of this. It just might take some time. 

And so definitely, I just think with this type of cancer with the unfortunate thing we don't have a screening process. 

I would love to see ca 125 at least of some from my particular journey, I wish there had been somebody along the way that did a CA 125. 

For my daughter, I'd love to have her base her baseline, just even do it now for baseline, but they’re reluctant to do that. 

But that being said to somebody that is having similar symptoms or any symptoms, just keep going back. Just keep going back to your GP or go back to another doctor until you feel heard because I think that this cancer there are signs that. 

Nicole 

So important. 

Nancy 

It's just that we don't have a screening. A proper screening program that is acceptable, accessible to our medical community, which is is so hard for them. You know, I just remember my GP face when we were talking that I had ovarian cancer like he said Nancy I’m so sorry, but no, there was nothing he could have done.  

That we didn't do so, I just think for anyone that is at the beginning save you even having any symptoms. 

Keep checking out until you find the answer that you want. 

Nicole 

Yeah yeah, you really have to be your own advocate. 

Nancy 

You really do. Yeah, you really do again. I hope that this gives patients some hope because it can be so fearful, yeah. 

 Stephanie 

Yeah. 

Well, thank you so much Nancy. It has been such a pleasure to record this with you and I love hearing about your journey and all of the hope that you bring to this world and thank you so much for all of you know, the engagement that you've been doing with our group and all of the advocacy that you continue to do in your personal life. 

So thank you so much for joining us and we hope you the very best. 

Nancy 

Thank you, what you guys are doing. It's life changing, it really is.  

 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 guiding cancerinitiative.ca.