Season 4 Episode 3: Breaking the Silence: TikTok Nana Raising Awareness About Ovarian Cancer

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In this emotionally resonant episode of the GOSH podcast, we are honored to introduce you to Anita Wright, widely known as 'TikTok Nana.' Explore how Anita's open and sincere sharing on TikTok has not only increased awareness but has also created a supportive community of followers who rallied behind her. This episode provides a chance to draw inspiration from Anita's experiences and gain valuable insights into early detection, cancer advocacy, and the enduring strength of a TikTok Nana who transformed her journey into a platform for change. 

Bio: Anita Wright is a 76-year-old cake artist from New Westminster. With more than 600 thousand followers on TikTok, Anita, known as 'TikTok Nana,' has captured hearts with her mesmerizing "acrylic piping art." Once a marketing manager, she found her artistry after retiring and starting her own event business in Toronto. Upon moving to Vancouver in 2017, she ventured into baking custom cakes and shared her creations online. In 2022, Anita received a stage four ovarian cancer diagnosis. She openly communicated this diagnosis to her followers and now uses her platform to document her ovarian cancer journey, aiming to increase awareness about this type of cancer. 

Anita’s TikTok: @tastyentertaining 

https://www.tiktok.com/@tastyentertaining  

Anita’s Instagram: @tastyentertaining 

https://www.instagram.com/tastyentertaining/  

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Transcript

SPEAKERS 

Anita Wright, Almira Zhantuyakova 

SUMMARY KEYWORDS   

Ovarian Cancer, Early signs, Awareness through Tiktok, Mental Health, Survivorship, Gynecologic cancer, GOSH podcast 

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.  

We would love to hear from you our incredible audience. We've put together a short survey for you to share your thoughts and suggestions and ideas. In this survey, we have a few simple demographic questions to help us better understand our listeners. Also, if you have ever thought of being a guest on our show or have someone in mind who you would like to hear from, well, now is your chance. We are looking for our guests who can bring unique perspectives, expertise and stories to share with us. 

Audience your feedback will play a vital role in shaping the future direction of the show, so please take a few minutes to complete the survey. You can find the survey link in the episode description as well as our show now. Enjoy the rest of the episode. 

00:01:32 Almira 

So welcome back to the Gorge podcast, and I'm your replacement host Almira. I work behind the scenes usually for the gosh podcast. Stephanie will sit this one out, and today we have an amazing guest, Anita Wright. 

Anita Wright is a 76-year-old cake artist from New Westminster. With more than 600 thousand followers on TikTok, Anita is known as 'TikTok Nana' has captured hearts with her mesmerizing "acrylic piping art." Once a marketing manager, she found her artistry after retiring and starting her own event business in Toronto. Upon moving to Vancouver in 2017, she ventured into baking custom cakes and shared her creations online. In 2022, Anita received a stage four ovarian cancer diagnosis. She openly communicated this diagnosis to her followers and now uses her platform to document her ovarian cancer journey, aiming to increase awareness about this type of cancer. So, thanks, Anita, for joining us today and taking the time to talk to us. 

00:03:00 Anita 

Thank you. It's my pleasure. 

00:03:02 Almira 

Thanks. Yeah. So, whether is the just knowing a little bit about you and could you tell us a little bit about maybe yourself and your cancer journey. 

00:03:15 Anita 

Well, I was very, very shocked with the diagnosis and I'll be very blunt with this conversation because I think it's important that people sort of understand this. 

 I have no cancer in my family anywhere at all. So, it never occurred to me when I started getting symptoms that cancer could have even been on the forefront. I was constipated. That's the truth and I was like that, taking all the typical home remedies for a couple of weeks and finally I thought “I don't know maybe I better go see about this” And my daughter happened to be going to the doctor's and he's my family doctor too. So, I said to her, “I think I'm going to come with you to your appointment and just see if he doesn't mind just answering a couple of questions for me”. So, I went and saw him, and he said “Ohh yeah, he said as we get older sometimes that becomes a problem. I think maybe we're going to send you for some X-rays just make sure nothing's going on”. So, he sent me off for X-rays and told me to continue with the laxatives and he would get back to me with the results of the X-rays. And I told him at the time like I'm really high energy normally and he and I used to joke about that, because I rollerblade most days. You know, I was high energy and he used to tell me that he didn't really believe I was 76 or 75 at the time. And I said, “I'm just exhausted and I have no appetite” and he said, well, we'll get to the bottom of it. So, he did the X-ray, and it came back, and he said yeah, you got a little bit of back up. But nothing outlandish, just carry on with what you're doing. I said “OK”, so I carried on, but I noticed I was getting bloated and more and more bloated and more tired. And I was just I had no energy, no appetite whatsoever. And it occurred to me that everybody seemed to be eating. And I was kind of focused like, oh, my gosh, they're eating again where it was becoming such a thing to me that I had no appetite. So, I called him up again and he said, “let's just do something a little bit harder on your body maybe we'll try the pre-colonoscopy medication try that and see if that helps you”. So of course, I didn't want to try that. But I did. But it didn't really help and then I was busy as I was pretty much every Thursday and Friday.  

It was Friday and it was 1:00 in the afternoon and that's when I do my live TikToks and I was decorating a cake. In fact, I had four orders that day because my cake business had became a business. It wasn't a hobby anymore. Let's just keep decorating after decorating, I'm like Ohh, how I’m going to get through these cakes. But I got through the cakes, and I put them in the fridge, and I signed off on TikTok and I text message to girlfriend of mine that lives in the same condo and she happens to be a nurse and I said to her “can you come down and just take my temperature and see how I'm doing? I'm not feeling very well”. My temperature was normal, and she said, “but I don't like the look of you”. And I realized I couldn't see my feet. I'm like “ohh, I'm like 9 months pregnant. Why haven't I noticed this?”, and she said “Yeah, I think we're going to call the ambulance” and I said “Ambulance? Like I'm constipated, like I don't need an ambulance. And she said, “yeah, I think maybe you do. So, they took me off kind of kicking and screaming, because I didn't really want to go. But I went and because of my I guess symptoms what I told them I was suffering. They gave me a physical and they said no. They didn't really find anything particularly abnormal, but they sent me for a CT scan and at that point, the CT scan came back. I was sitting in emergency. This was really odd because I was just sitting in emergency. My daughter arrived, but I wasn't like in a private room or anything. I was just in emergency waiting for them to come back to me. And doctor called my name and came out with a clipboard, not a doctor that I had seen at that point, and she said miss Wright. And I said yes. And she said come sit over here and we just moved a little bit aside. My daughter was there, and doctor said, yeah, you have cancer. And I said, “oh, no, no, I'm here because I'm constipated”. And she said no, I'm sorry you have cancer. I said “I don't have any cancer in my family. Why would you think I had cancer” and she actually looked across than doom, and she said, do you see that's a trash can over there? And I said yes. And she said to my daughter “Do you see that’s a trash can? And my daughter said yes. She said “we all know that it's a trash can. We just don't know what's in it yet. You have cancer”.  

So, my daughter and I, we weren't even really terribly upset. We were just kind of stunned, kind of numb and I'm like “no, I think they've got somebody else's file. That's not me. I mean, why would they think that?” And so, we sat there just sort of ruminating on the whole thing and being completely stunned by it all. And then another doctor came around and started to explain it to us. And then like ohh, wow having no appetite, having fatigue, having bloating, having constipation, these are classic signs of ovarian cancer. That on their own, really don't mean much of it to anything. But collectively, that's cancer, it's ovarian cancer. It might have been uterine same kind of things can happen with uterine, but it was ovarian cancer. So, I spent a few days in the hospital, they drained all the liquid, because it was a sides. They took 4 liters of liquid from me. And I basically came home, because at that time they had misdiagnosed and said I had a stage 4.  I came home preparing for my next few weeks, because they told me I didn't have much time left. So, we were in a state of shock. But there's a good outcome from this, because, you know, people rallied, and we contacted the Cancer Society and we did our homework and all of a sudden things, the ball started rolling and here I am. So, that's how that sort of all went down. 

00:10:29 Almira 

Great. Yeah. Yeah, I'm glad that it went kind of that it was diagnosed pretty fast, because sometimes this kind of symptoms can get overlooked, right? For a long time. 

00:10:41 Anita 

Yeah, a long time. I think one of the things that I try and do with my TikTok is with the awareness I tell people. I don't want them to think that I'm trying to alarm. Because it can be very frightening and very easy to put your head in the sand. But I want them to start thinking about, if you've got a couple of these symptoms even a couple just push and make sure that your physician is not overlooking what this potentially could be. We need more awareness, because I didn't know anything about this, never entered my head. 

00:11:18 Almira 

Yeah, yeah, actually, before, for preparing for this interview, I watched some of your TikToks, and I actually read one of your captions, and like, I see that you always mentioned that just be aware, not necessarily alarmed, but just know that it can happen, better be safe than sorry. 

00:11:40 Anita 

Yes, it can make a huge difference to your life. 

00:11:43 Almira 

Yeah, for sure, of course. Yeah, thanks for sharing that. And you shared your story on the public platform like TikTok. It was very courageous and really good cause to spread awareness. And I was just wondering what motivated you to share the story, and how did your audience react to that? 

00:12:13 Anita 

Well, I was motivated because first of all, I'm an extremely open person. I sometimes I'm too open, but I just wanted everybody to know something that I didn't. As I said, I don't have any cancer in my family. I have been fortunate enough not to be close to it. I was certainly never aware of any, like you hear about colon cancer, you hear about breast cancer. You know, there's like, a bunch of them that you hear a lot about, but there's a bunch of them that you don't really hear about. And when I realized I had over 600,000 followers, most of whom are female, the big percentage, probably 90% of them, are female. I thought, “well, this is a good opportunity”, you know, if I can save one life and I'm really happy to report that I've built up a really good relationship with a bunch of gals, some of which have been fortunate enough to go and be tested and have other things wrong, like just polyps or cysts or whatever, and others that have managed just to save themselves a little bit earlier than maybe they would have. Some have gone and had nothing wrong, you know? But I'm just thrilled that they did and the support and the outpouring that I got from these people.  

I have stories, I had one girl. This is a very, very moving story. She was just a perfectly active individual until two years ago. She was riding her bike, this is in the states. She was riding her bike. And it was a bad windstorm, and she was hurrying to get home and a branch flew off and hit her on the back of the neck and she became a paraplegic. She reached out to me and told me that she lives very, very close to a hospital in the United States, and if I felt that that was going to be advantageous, she'd love to offer me her home at no cost that she'd fly me down there. This is a woman who's a paraplegic. And this is what she's offering me like I was so moved by this, I'm like ohh my gosh. I mean, I can't even tell you like the stories that people, things that they've sent me, that they've made me that you know bracelets and a little tiara to wear, when I was bald wigs. I had a gentleman in Florida who. I won't say he's homeless, but he's close to being homeless. He lives in a makeshift trailer. People send him things out of goodwill and for some reason, one day somebody sent him a wig. And he kept it for a while. He didn't know what he was going to do with it, because it was by accident, he thought. But when he saw my story, his followers gave him enough money to send me the wig. And you can find that on my TikTok. It's a story on my TikTok. But the people are amazing, and that's for me. That's where all my strength comes from everybody else. 

00:15:43 Almira 

It's so great, like the stories are so actually, they're so moving, such an amazing communities that you built through your platform. It's just unbelievable. It's great, it's really great that you use the platform and it's kind of an exchange, right? You share with your energy, the stories, and then they sort also get the energy sort of and support back. That's great. And yeah, since we're talking about the support and like the support system that you have, maybe you could talk us through maybe about what help you with your mental health, with your throughout the journey with cancer. 

00:16:31 Anita  

Well, I know people find this hard to believe, but having cancer hasn't been the worst thing in my life. I mean, nobody wants to get this diagnosis. But it has shown me so much love and support. I'm just talking now about my close family and friends. Things that you probably wouldn't normally show somebody, like every single time I've had chemo somebody has spent the day with me. I mean, lots of people go to chemo by themselves and they sit there, and they go through it. But no, for me, I've been fortunate enough that somebody's come with me every single time and then I've had, you know, as you know, I live in Vancouver. But I'm from Toronto. So, on three of my treatments, friends flew out here to stay with me for two weeks to look after me after I had my chemo, and I have these special times and moments where you just sort of focused on each other. It's been really, really amazing. There's Silver Linings in everything, every part of this, that I have learned, I mean, I don't like the prognosis. But the journey actually has been quite enlightening, and in some ways lovely. Not that it would be my choice to go get it, but taking from it what's happened, It's been pretty amazing. 

00:18:07 Almira 

That's great that it's good to hear that you had like the strong support system from your local… 

00:18:11 Anita 

I think that's what everybody needs to get through it. I don't think this is a journey you can take along. 

00:18:17 Almira 

Yeah, definitely. Yeah. How about your relationships with your like loved ones, the support system that you had? Did it change throughout the cancer journey? 

00:18:29 Anita 

Well, I have two daughters, one that lives in Toronto and one that lives here. My daughter in Toronto has my 14-year-old grandson and of course her husband, my daughter's husband and we were very open with my grandson, because he and I are really, really close. You'll find him on my TikTok. You'll see some of the things. So, we're very close. So, we were very open right out the gate and I told him I'd always let him know where we were, what we were doing it. But my kids have been great, you know, they've just been really tremendous, and one of the things that I'd like to sort of in part is that they need care too. Sometimes I see those kinds of people being forgotten, but they're the one behind closed doors thinking about, you know, maybe losing their loved ones. So, I think it's really important that those caregivers really need to have support. 

00:19:30 Almira 

Yeah, yeah, I agree. Actually, in our podcast in the last season, third season, last year, we had a caregiver, a husband of a patient who was diagnosed with endometrial cancer, and it was really being enlightening to hear what they actually have to say, because it tends to get overlooked, and they need a special like support as well, right? Like some resources, support, and yeah, and we need those voices to hear those voices as well. Yeah, that's a great point. 

00:20:02 Anita 

Yeah, they handle it differently too, because I guess each person is like one of my daughters, she’s like “you're OK, mom. You're fine. You can do this, you know, just it's you had your treatments. You're OK. Everything's fine”. Where? My other daughter. She's sort of like “well, no, we need to make sure that you're still OK. And you're doing this”, and they handle it completely differently. So, I know they're internalizing it differently than what you might think they are. 

00:20:34 Almira 

Yeah, yeah, it would be cool to hear the perspectives as well. Yeah. So, What about now? How are you? Are you still going through chemo or are you in remission right now?  

00:20:51 Anita 

Well, I don't really know how to answer that. So, I finished my chemo. I think it was the beginning of May, middle of May, and I had had a particularly bad time of it at the end, because they decided that they wanted to up the dose of the chemo. So, on one of the chemo treatments, they upped the dose, but it tanked to my immune system so badly I went into sepsis. So, I was back in the hospital, and I was there for about a week. I was quite sick, and then I had to go to outpatient therapy for about 10 days where I was receiving intravenous medication for this sepsis. But I was supposed to be receiving the PARP inhibitors, which was the maintenance drug after that, but they were afraid to give it to me straight out the gate, because they didn't think that my immune system might be strong enough to take it.  So, we talked about it, my oncologist and I, and we decided that we're going to take a chance. But we were only going to give me 50 percent of it. So, on July the 19th, I started the half dose and I guess about two weeks later, 2.5 weeks later the pills gave me mild heart failure. So, it knocked me back down again and I wasn't very well, and we took me off those pills and very quickly I got better. So, it was definitely the pills, because at the time I had fluid on my lungs and my resting heart rate was like 100 and 22. So it was really hard for me to do anything. But I had already got a ticket to go to Toronto as I do every year for my daughter's birthday, so I thought I'm going. So, my oncologist said, “Well, let's just make sure that you don't have any blood clots from this. Let's do a CT scan, a full body CT scan, and if you don't hear from us, jump on the plane and we'll phone you tomorrow, if you do have any reason to stay behind”. So, I said, “Ok”. Well, nobody called me, and three days after I was in Toronto, she called me to tell me that there were no blood clots, but they found a 13-centimeter mass anterior to my liver. So, I said “Well, what's that mean?” She said “Well, I actually immediately phoned the radiologist” and I said, “What is this?” And the radiologist said, “I don't know. We better biopsy it”. So yesterday I had a biopsy, and they've drained a little bit of fluid. It's not giving me any discomfort. I would not know it was there. And strangely enough, I had bloodwork done the day before, just to make sure that the Clotting was good, and my tumor markers have gone down. Which is odd, because I haven't had any medication, and now I've got another mass, but my tumor markers are going down. Yeah, very interesting. So, when they drew the fluid, the doctor said to me “ Well, sometimes you just have fluid”, he said like “if you had a blister, because something aggravates it, it will just disappear on its own it might not be anything to worry about”, but he said “I don't want you to hang your head on that yet, because we didn't have to have the biopsy”. So, to answer your question, how am I? I'll know on Wednesday. 

00:24:39 Almira 

Fingers crossed. 

00:24:39 Anita 

But I feel fine. 

00:24:42 Almira 

Yeah, that's great. Yeah. Isn't it? 

00:24:45 Anita 

Yeah, I feel pretty darn normal. I would say my energy level is not what it used to be. But then people always say that I had too much energy anyway. We'll see. Yeah, whatever it is we'll deal with it. 

00:25:01 Almira 

Yeah, fingers crossed. That is so good. Yeah. So, you mentioned that like, since your diagnosis, you noticed that your energy levels a little bit went down. I was wondering if there are any other sort of changes that happen to you, after all this treatment to your body. 

00:25:30 Anita 

You mean side effects from drugs? 

00:25:31 Almira 

Yeah, side effects mostly. Yeah, yeah. 

00:25:33 Anita 

Yeah, yeah. The side effects. They were all crummy, but none of them were disastrous now. I guess maybe the movies have done this to us you kind of think chemo “Oh, there's going to be a lot of nausea”. No nausea with this drug. So, there was none of that. I did experience dry mouth which was now, it didn't change the taste that something else somebody said, “oh, you know, you'll the things don't taste the same”. Everything tasted just fine, but I just had a dry mouth. And that was like a pain in the butt. But not the worst thing that could have happened. The energy level for sure. I didn't really experience a lot of other things. I did do the cold therapy. Are you familiar with that on your hands and feet? 

00:26:32 Almira 

No. What is it? 

00:26:35 Anita 

Well, my daughters, they joined the Facebook group for ovarian cancer, and they wouldn't let me join it. They said, “Mom, there's a lot of really good information on there, but there's a lot of really sad stories and we want to make sure that you still feel positive about this”. So, they said “Let just read through the things”. So, apparently you can really get neuropathy in your hands and feet from the chemotherapy that is applied now. I had carboplatin and Taxol and those ones do you have a side effect of a neuropathy and there's a lot of chitchat on the Facebook group which you sort of have to take with a grain of salt what's real and what's not. But that is in the states. It's automatically given to ovarian cancer or to patients taking that cocktail, and you wear these little mittens and little booties on your hands and feet, and they're filled with an ice pack. And it supposedly helps you not to get the neuropathy after your treatment. Now, whether that worked or not, I don't know, but I knew it wasn't something that was going to do any harm to me to try it. So, I did it and I do have a very close friend who has the same cancer, and she did not do it, and she has neuropathy in her hands and feet. And we're five years apart in age, same cancer, ovarian stage 3. I mean, we're different bodies, so who knows? But I didn't feel there was any problem doing it, because I knew there was no negative to it. But other than that. I don't think I really had any other side effects to speak of. 

00:28:34 Almira 

Mm-hmm. Ok. So, we also talked about some of the, like, sometimes the symptoms can be of ovarian cancer can be overlooked, can mean something else, and along those lines, I was wondering throughout your journey, have you encountered any misconceptions about ovarian cancer? 

00:29:00 Anita 

Well, I think the biggest misconception is that when it goes into remission, if you're fortunate enough to have it go into remission. People are congratulating me like “Oh, that's wonderful, you’ve beat cancer. You'll be fine”. I don't think they understand the gravity of “you don't beat this kind of cancer”. There's never life after cancer. It's life with cancer. It might not be at the forefront. But I'm always going to have cancer. It doesn't just go away. So, I think that would probably be the biggest misconception. So, I've never treated it as even though for a very short period of time, I was ND (no evidence of disease). You can have that. But I still treat it, like It's not that I'm getting up every day looking for cancer, because I don't look for it. But I'm living my life like I don't have it. But I'm prepared for it to come. 

00:30:14 Almira 

Mm-hmm. Yeah. A lot of cancer patients that we talked to in our podcast have this anxiety over remission over recurrence I mean, like, you never know when it's going to happen and if it's going to happen. So, yeah, but that's great, that's… 

00:30:35 Anita 

I try not to do that, because I feel like cancer's taken enough of my life. If I let it have the anxiety with the rest of my life, I'd be giving it more than I need to give it. As far as I'm concerned. I've got it. It's in the back cupboard right now, and I'm not going to worry about it until it comes in the door. I'm just not. 

00:30:58 Almira 

That's a great mindset, yeah. Yeah, talking about like mindset and like the in general about what kind of advice or tips would you give to like cancer patients who are going through this diagnosis right now? 

00:31:21 Anita  

I think we've touched on them a little bit, first of all. I think it's really important to have support. I think you need as much support as you can get. For me, I do well by talking about things. Whatever happens in my life, I like to say it and say it again and say it. Maybe I'm trying to make myself believe it. I don't know what it is. But if I offload it. It's better for me than keeping it inside, and I do think I mean, we've all heard that laughter is the best medicine, and keeping a positive attitude, that's not going to keep in a way, if it wants to come back. But it'll certainly make your life better while it's happening, or while it's not happening. I think you just have to tell it, you’ve to tell yourself, “You know, this is my journey, this is my life. I can't sit back and think Why me? Because why not me? I'm no more special than anybody else, so let's just move on with it”. But I just don't want to give it more than I need to give it and just take one day at a time, but live as though you've got lots of time left. I'm not going to plan to save myself. So, oh, I can't do this, or I can't buy a new car, because what if? Yeah, if I want a new car, I'm going to buy a new car. You just can't dwell on it. So, I would say those are the two things, I think you need to have really good support. And when people say to you “You know, can I do something for you?” Don't say no, say “that would be amazing. Yeah, come on over and have a cup of tea with me”. It doesn't have to be like they're going and getting your groceries or something. But just come hang with me for a bit. 

00:33:15 Almira 

Yeah, that's great. I think that's really great advice thing from this interview. In general, people would get a lot from it. So yeah, thank you so much. I think that was our last question. And thanks so much for joining us today and it was an insightful interview. 

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 cancer initiative.ca.