Community Stories
Transcript
Sep 27, 2022
Male: Use your legs. Ready? Go. Good. Go. Now add a three. Good. And add a two at the end of the three. Good. OK. Deep breath.
Female: You’re kicking ass!
Female: That was so cool.
Male: You want to take a break?
Emily O: Just like today in a sweaty Chicago Park District gym, breast cancer survivor Csilla always shows up to boxing class. Even when she was going through cancer treatment.
Csilla: And even though I couldn’t do all the moves and everything during chemo because I didn’t have enough oxygen, so I would run out of breath really fast, but I would show up. It never gets old to me, or, for me.
Male: Deep breath. Jab.
Emily O: Because for her, boxing is so much more than a workout. It helps her fight through every challenge that comes her way. Even chemo.
Csilla: So I have a goal. I come in, and I say, 'OK. Today I’m fighting against my fear.' Sometimes the thought of something is way more scary than the actual whatever you’re doing. And so it was with chemo, too. I was way more scared at the beginning. And then when you’re in it, you deal.
Female: How was chemo as an opponent?
Csilla: Chemo is tough. Very tough opponent. But you know what is tougher, I feel like? Your state of mind.
Caitlin Kiernan: Cancer is not pretty. The side effects can impact not only how you feel, but also how you see yourself. Whether you want help learning how to create eyebrows from scratch, need to know how to treat a radiation burn, or are just looking for wig shopping tips, you’ve come to the right place. Welcome to the Feel More Like You podcast, presented by Walgreens and Pretty Sick: The Beauty Guide for Women with Cancer. I’m the book’s author and your host, Caitlin Kiernan. In each episode, we’ll break down the important information to help you look and feel more like you. In this episode:
Female: Someone has given you a raw deal. And unfortunately, with cancer, there’s no one to blame it on.
Female: And actually, it’s even—it’s even more scary now. I’m still getting pretty terrible news.
Female: Surgery was one thing. Blah, blah, blah… I froze.
Female: It wasn’t just me, here fighting in my corner. There’s a crowd around you, somehow. Your team. We’re in your corner. So…
Female: You know, just because everything’s awful doesn’t mean you need to always feel awful.
Emily S: The views, information and opinions expressed in this podcast are those of the individuals involved and do not necessarily represent those of Walgreens and its employees. While we care about you and your health, this podcast is meant for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis or treatment from a qualified healthcare professional. Walgreens does not recommend or endorse any specific test, products, procedures or other information that may be referenced. Always seek the advice of your physician or qualified healthcare professionals to see what the best treatment is for you.
Caitlin: On today’s episode, we’re going to talk about mental resiliency. After a diagnosis, it’s totally natural to feel like you’re on an emotional roller coaster. Here to help me discuss how to navigate your feelings, I’m joined today by Walgreens pharmacist Emily Shafer, beauty consultant Laura Catron and health editor Emily Ornberg. Hey, gals!
All: Hey. Hello. Hi.
Caitlin: So, Emily, you talked to a lot of survivors. I want to hear what they had to say about this.
Emily O: So many survivors started to feel kind of guilty for almost letting this impact them emotionally. A lot of times when they are the caregiver and the main glue that holds their family together, they support their children, and they—they just want to be that person, that rock of their family. And so when they go through a diagnosis and they try and face the day, they start to feel like a burden on their caregivers, because they’re, (A) no longer there to support their family, but (B) they’ve said that now they’re asking for help. And they are the help. Then they might feel ashamed to even start to look into something like anti- depressants. They don’t want to be on medication any more than they are. But I want to hear from you, Caitlin. Did you face that at all when you were going through treatment? I mean, did you feel—
Caitlin: Yeah. Yeah, totally. I mean, listen, I really went in, and I was like, ‘I’m going to be strong, I’m going to do this.’ And it just really got to me. You know, like, your everything is changing. So it’s a lot to take on emotionally. And I just remember on one of the days I was going in for chemotherapy, I was sitting in the room crying. I was just a mess, of course. With every right; it’s understandable. And my doctor was like, 'Listen, I think we need to put you on an antidepressant.' And I was like, ‘I don’t want to be on an antidepressant.’ I didn’t want to be associated with the stigma that often comes with antidepressants and medication like that. And he was like, 'Listen. It’s going to help you. Use what you need. Tap the resources you need. This is a resource you need.' And I did. And it made a huge difference. But I do know there’s a lot of women like me. I mean, Emily, you can speak to this. Do you hear from a lot of women that are like, ‘I don’t want to go on this?’
Emily S: There is a huge stigma around mental health, in the U.S. in particular. But this is nothing to be ashamed of, if that’s what you need. Mental health goes right hand-in-hand with your physical health. If your body’s working so hard to fight that cancer, let’s make it so that the depression and the anxiety and other challenges with your mental health, you’re given a little help with that. Obviously, your doctor and your healthcare team are going to be able to assess that and find the right prescriptions for you. Perhaps even cognitive therapy, talking to someone, a therapist that’s not just your oncologist or just your oncology team, may be helpful for you as well. But if medications are what’s right for you at this time, I think it’s fantastic and something to certainly explore.
Caitlin: I think there are little things you can do—the little tricks of beauty. Laura, what are the little things that someone can do makeup-wise, a mood booster.
Laura: The one that sounds just like, so crazy, but it’s the most impactful, like a bright color lipstick.
Caitlin: Totally.
Laura: It sounds—I’ve had so many women who—they’ve completely lost their hair. And then they’re like, ‘Oh my gosh, everyone is staring at my bald head.’ And I was like, ‘Well, if you have a hot pink lipstick on, they’re going to stare at your hot pink lipstick.’
Caitlin: Heck, yeah.
Laura: And I did it to one woman, and she was like, 'Oh my gosh, you’re so right.' And then it just inspired her to get—to match her lipstick to her scarf or things like that. And it’s just something that’s so simple that can brighten your day. And even mascara. Don’t give up on mascara. Pop a little bit on, because you may see a little lash that started growing back that you didn’t know was there, and then you’ll just get excited.
Emily O: So I want to hear from you, Emily, where are places that survivors can look to if they need help navigating the emotional changes of cancer?
Emily S: Cancer Support Community is a wonderful resource with various support groups, as well as resources to help direct you in the right—the right way for what you’re going through. Mental Health America is also a really great resource for any patient. And caregivers in this time, too, let’s not forget about them. This can be so challenging, in a way that they never realized as they’re trying to stay strong for someone in their family, or friends, and both of those resources can be really helpful for that group as well.
Caitlin: So we’re going to wrap this up, this was great information! Just give me a takeaway tip—I’m going to start with my takeaway tip. In trying to get through my cancer diagnosis and treatment, I think there was a lot of emphasis on being positive. And I always say to people, I say to other survivors and patients, don’t be positive. Find the silver linings. Telling someone to be positive and to correlate that to what might be the outcome of their treatment just adds a layer of burden and stress that they have to kind of keep that up. And I always say if you find the silver linings, that helps you see the good in whatever comes out of it and to be grateful. You’re going to lose your hair. OK, great. You get to try on three different wigs and show up as Marilyn Monroe one day. You’re going to lose a little weight? OK, great, you get to fit into your skinny jeans. Whatever it is that you’re dealing with, just try to find the silver lining, because that really does help you. It does. It helped me.
Emily S: So, I would say that my tip is regarding mental health. Patients often have a lot of concerns when considering if they should take a medication to treat their anxiety or depression symptoms. ‘What are the side effects?’ ‘Will I still be “me” quote-unquote?’ ‘How long until I feel better?’ And adding these concerns to a cancer diagnosis can feel even more overwhelming. But these changes and new feelings aren’t because you can’t handle the new diagnosis, again quote- unquote. In fact, studies show that depression symptoms are present in up to 38 percent of cancer patients. The best option is to have a conversation with your doctor, being honest about your concerns and fears. The goal is to help you feel more like yourself, not the other way around.
Caitlin: Great. Laura?
Laura: I mean, definitely, just don’t give up on taking care of yourself, just because you’re sick. That’s the biggest thing. Because the second you start doing that, you’re going to feel yourself getting sicker. And so just doing those little things to take care of yourself that spark joy, that bring those happy thoughts back to you.
Caitlin: Yeah, I agree. It’s like, when you do your hair, you have your hair done really well, and then you’re like, ‘I need to go out tonight.’ You get up in the morning, and make that effort, you want to get out the door. It gives you that push.
Laura: Exactly.
Caitlin: Ladies, great information. Thanks so much for joining me. Let’s get right into the episode. Fighting cancer physically is its own battle. But emotional survival can be the real war. Mind over matter plays a huge role in this journey. Now let’s hear from our survivor sisters. How did cancer impact you emotionally, and how did you cope?
Melissa: Hi, I’m Melissa. I am a filmmaker, and I have metastatic breast cancer. I remember I was—I had had a CT, because I had been throwing up, and we didn’t know why. I was walking to a casting session with my Starbucks, like, ‘Yeah, life is good, just had my CT.’ And when they called, I was like, ‘This can’t be good.’ So I answered the phone, it’s not one of those phone calls where you— they’re like, 'Hey, everything looks good, you’re fine.' It was, 'Where are you? Can you talk?' All those things that you don’t want your oncologist to say, she’s saying. And so I had popped into Marshall Fields, because I couldn’t hear her, it was like really loud on the street. And I remember being in the men’s sock aisle as she told me, 'It’s in your liver. It’s in your lungs…' –I’m good. Yeah.— But it had spread to kind of a lot of places. And I think after that I was like, OK. This is far more scary than I thought it was going to be. But I think since then, it’s still just as scary. And actually it’s even—it’s even more scary now. I’m still getting pretty terrible news. But at least at the end of the day, there is nothing else I can do, but live. And try to live the very best life I can. I feel like I owe it to myself and my family. I feel like I owe us that much, to live as well as we can, for as long as we can.
Because there is—to me there is no other option. I don’t want to waste anything. I’ve said this, I think a million times now. Every time I talk to someone who is newly diagnosed or even coming out of treatment, I think that we do not talk about mental health enough, especially with a cancer diagnosis, and I think it is the most important thing you can do for yourself, is finding somebody to talk to. It’s something that I really wish I had done sooner. It led to so much more peace, when I had finally found someone who I felt understood me, and I could at least just cry and let it all out, and then I would feel so much better.
Christine: Hi, my name is Christine, I’m a high school science teacher, and I have ovarian cancer. My mom passed away from ovarian cancer in 2017, and I was diagnosed in 2018 with the cancer that killed my mom. When I was diagnosed, they gave me a 17 percent chance to be alive in two years. And I was just like, screw you! Like, who are you to tell me that I have a 17 percent chance to be around in two years? You don’t know me. I hear it in my head all day every day. ‘You have a 17 percent chance of being alive two years from today.’ You have to be stronger than cancer, and you have to just not let it get in your head. Wherever you find strength, you just have to embrace it. And even it’s from the little things, like my students sending me notes and writing me cards and telling me that I’m important, I’ll—on bad days, I’ll read those. A couple weeks ago, I had my blood work done, and they do the test for the tumor marker, and that’s a gauge of where you’re at. And when I originally was diagnosed, my tumor marker was at 2387, which is really high. And then my last—the last time I went, it was at 6. And I was like, ‘OK, Mom, I know that you’re here, like I know you’re with me, and I know that you’re fighting with me.’ There’s definitely moments where I just miss her. And something happens and I’m like ‘OK, I know it was you,’ and I just kind of laugh and think, ‘Thank you, I needed that.’ So, I think wherever you can find your strength, just find it, embrace it, and let it fill you up. Let it consume you. Fight to live. Every single day is a fight. And I want to be here. There’s places in this world I haven’t been yet. There’s things I haven’t experienced. All right, two years, OK, well screw you. I’m going to be around a lot longer than two years.
Stephanie: Hi, my name is Stephanie. And I’m a realtor, I’m a certified life coach, I’m a creative, I’m a world traveler. And I just happen to be a breast cancer survivor. The first time I walked into that radiation room, that’s when it hit me. Surgery was one thing. Blah, blah, blah… I froze. I froze. I walked into the room and I froze. And they said, 'Are you OK?' And I said, 'I need a minute here.' Because it looked like something out of a spaceship. I felt like I was on a Star Trek episode. And then I noticed—hey, how come I’m on this side of the mirror, and everybody else is on that side? You know, it was like, what’s going on here? In that moment, when I walked into that room, and I looked around, and I went, 'Ooh, this is serious. This is—we’re not fooling around here. This is the real deal. OK. So what is the worst-case scenario. Because we can’t control—we cannot control what the outcome is going to be. Just plain ask yourself, what is the worst-case scenario here? And then once you recognize that and you name it, that’s what you can address. And say, 'OK. I’m worried that I’m going to die, and my children will have no mother.' OK, why don’t we start thinking, OK, well, no, what am I talking about? They’ve got this. They’ve got family. I’ve got this, I’ve—my children will not be left without someone in their lives. And we forget sometimes that, you know, other people are on this journey with us. They’re going through stuff, too. And I think sometimes it’s important that we acknowledge that. And say, 'You know, I know it’s scary. Mom knows it’s scary. You know, I’m scared. It’s OK. But look, baby, we could be scared together? OK? And we’re going to hold hands, and we’re going get through this together. We’re going to get to that other side.' And we’re going to be fine.
Deanna: Hi. My name is Deanna. I am a beauty writer in New York, and I’ve had cancer three times. It was weird because the first time I was diagnosed and had treatment, I went into it being like, 'All right. Let’s do this thing.' My doctors told me that that is much better in terms of how the patient fares through treatment than just kind of flopping onto the cot and resigning yourself to treatment. And so it was kind of over in a flash. I found out I had cancer, I had the resection surgery, and then that was it. I kind of went on my merry way. And so, I think that came around to bite me, because when I really had cancer the next year, and then when it recurred seven months after that, it was really hard. It was really hard to have gone through all that work and have it not pay off. And so before the transplant, I found myself like in a really, really dark place, and I channeled it into anger, because someone has given you a raw deal, and unfortunately, with cancer there is no one to blame it on. I unfortunately took it out on my mom a lot, just because she was around the most. I started to have really bad anxiety, and I was getting sick to my stomach. And so it was a few months before my transplant that I finally had such terror that I called Cancer Care, which is this charity that provides free counseling sessions with a therapist who specializes in oncology patients, and that helped immensely, just to talk to someone who is an expert and could help me navigate and make sense of what had happened to me. I think it will always stay with me, and impact me, and I guess in a not-so-bad way be there to bring me back to earth when I think things are bad. If it’s not cancer, it’s not that bad.
Csilla: Hi, I’m Csilla. I’m a mother, a teacher, and right now, I’m in my second year cancer-free. You know, cancer is what it is. But the experience is what you make it. We tend to think of the negative most of the time. I don’t know why we’re conditioned like that, and that’s normal. But knowing that, I thought, OK. So that’s the way down. But now I can find the way up. And the way up is, what is this positive mindset that I can find for myself? And so, when I was going for chemo treatment, and I saw the women sitting in their chairs getting the infusion, each one, you know, suffering in their own way. And I would wear my pink wig, and I thought, 'we’ve got to cheer up.' And sometimes I would go and I’d say, 'Girls, party time.' And then they started laughing, and I thought, ‘We are all in this together.’ And that was one big lesson for me. You know, it’s very important not to isolate yourself, and don’t think of yourself as a burden. I immediately, as a mother and wife and teacher, you know, I thought of myself as a burden. And I had to suppress—not suppress it, but change that. If people— your friends, your family, want to help, let them. If they want to find out how you are feeling, let them in. And that helped me. I always thought, OK. It wasn’t just me here fighting, in my corner. There’s a crowd around you, somehow—your team. ‘We’re in your corner.’ So.
Brianna: Hi, I’m Brianna. I’m a writer, and I survived Hodgkin’s lymphoma. I definitely approach everything with a sense of humor, which sometimes gets me in trouble, because it does make it seem like I’m not taking things seriously in more dire situations. But it was one of my best coping mechanisms when I was going through treatments, and everything—was being able to write as a journalist about my experiences in a funny way. But there is something good to come out of this. Even after the fact, I’ve started performing on stage and telling stories about it, in a funny way again, that just feels very therapeutic and cathartic. So humor is a huge, huge help for me. It’s also just important to feel how you’re feeling. Like that—you should still be able to cry and tell people to leave you alone, and just feel empowered, and what you need and your—your feelings. It’s both—both sides. Try to have a good outlook, but you don’t have to be like super sunshine and roses all the time, because that’s not what it is.
Caitlin: When we scrape our knees, we know to slap on a Band-Aid. But what about treating day-to-day emotional aches, such as fear and grief? It’s natural for cancer patients to feel sad, depressed, angry, anxious, but we don’t always talk about how to cope with these emotions. That can have a major impact on one’s quality of life. Here to help is Dr. Guy Winch, therapist, and author of Emotional First Aid: Healing Rejection, Guilt, Failure, and Other Everyday Hurts.
Emily O: Hey, it’s Emily, health editor. To begin learning how to move past fears and frustrations, Dr. Winch wants to talk about cow’s barf. Specifically, the idea of rumination. Which for cows, literally means to chew over and over, spit back up, swallow—
Guy Winch: —They regurgitate back up, and chew again, so again, it’s slightly disgusting, but it works well for cows.
Emily O: But when we ruminate, Dr. Winch says we tend to focus on the negative thoughts we can’t seem to digest. We toss them over and over and over again.
Guy: Over, and over and over again. For example, for a person going through cancer treatments, the thought we might be tossing around is, ‘What if these treatments don’t work? What if I don’t make it? What if I don’t make it? What if I don’t make it? What if I don’t make it?’ And it doesn’t get elaborated a lot, or maybe some—sometimes it does, but it’s just a repetitive, kind of intrusive negative thought. The problem with rumination, though, is that it impacts our immune system, through the stress response in our body that impacts and represses the function of our immune system. So it’s especially important during cancer treatments, when you’re immunocompromised a lot of the time, with a lot of these treatments, it’s something you need to address in that moment.
Emily O: The best way to address a ruminative thought is to reshape it into a problem that can be resolved, or what Dr. Winch calls a productive line of thought.
Guy Winch: So productive line of thought is not just, ‘What if I don’t make it?’ But, ‘Is there everything I’m doing—am I doing everything I can here? If this treatment doesn’t work, let me go and research the next line of treatments that might let me have another kind of arrow in my quiver on the ready.’ And that will break that ruminative cycle.
Emily O: Can you talk about useful tips that can help push out those negative thoughts?
Guy: Right. So there are a couple of exercises that you can do to break out of a cycle of rumination when you find yourself really kind of spending too much time doing that. Number one is a gratitude exercise. And that is that you, on a daily basis—you write down three things that you’re really grateful for. A couple of sentences about each one. Why I’m grateful. So you won’t write down, /'Sun, because that doesn’t do much. You write down, 'I’m grateful that it was a sunny day. I felt well enough to outside. And feeling the sun on my skin felt so good, I just closed my eyes and imagined I was back at the beach like I was three years ago when I was feeling great. And it was so good to have that memory in that moment.' Something like that is what you would write. So three of those every day are really important. The other thing that’s good—you know, because ruminations are intrusive thoughts. They pop into our mind when we don’t want them to. Now, we can’t just not think about them, that’s not how it works psychologically. You need to think about something else instead that will take their place. And that means that you need to think about something that demands concentration. Two-minute distractions should be sufficient. But it could be trying to remember the songs in your playlist, or who you sat next to in every grade of elementary school. Some kind of memory or cognitive task that requires a certain amount of concentration. Because once you’re focused on that task, you won’t have enough bandwidth left over to be thinking about the rabbit hole one.
Emily O: And why is it so common for people going through cancer to feel lonely?
Guy: So there’s this unfortunate thing in our society we have with serious illness. It’s the same thing we have with serious disability. It makes people feel uncomfortable. It shouldn’t, true, but it does a lot of the time. And so people often that you would expect to be checking in, to be reaching out, are uncomfortable, and so they’ll—they’ll send a text, but they’re not really available to talk, and that can be very disappointing. And that can feel lonely. And it can also feel lonely because you’re going through a very unique experience.
Emily O: So what do you do about feelings of loneliness? How do you address those?
Guy: It’s always best to connect to or to talk to people who really understand it, who really get it. You might have those people in your life, but people going through cancer treatments often join support groups because they can talk about the small, little things, the big things, the different feelings, the occasional situations that come up that somebody else going through it will really get immediately without a lot of explanation. So don’t ignore feelings of loneliness. Because they do impact your immune system. And you need your immune system to do as best as it can during these treatments. It’s especially important to do something about feelings of loneliness, to reach out, to connect.
Emily O: Survivors of all ages are sitting in rows of plastic chairs before a support group session. At first, everyone starts to look around as if to seek permission to get silly. Then, group leader Chelsea begins giggling and everyone follows. Snickering behind their palms at a pretend sleepover. This is laughter yoga, a class offered by a Cancer Support Community. Laughter yoga doesn’t include any jokes or comedy, stretches or movements. Instead, Chelsea leads the group in boisterous exercises in forced laughter, with the idea that it can provide the same benefits as spontaneous laughter. And it often turns into real, contagious laughter. We try the evil laugh… the roller coaster laugh… even laughing pills.
Chelsea: And next, what we’re going to do is called laughter pill. You know, for all the medication that we have to take, that we wish just did something fun, like make us laugh. So, it’s as simple as, you know, you have a—
Emily O: Chelsea takes a pill from her hand, stares at it closely and swallows it.
Eventually, it transforms from feeling ridiculous to downright hilarious. Laughter yogis are cracking up with their neighbors, snickering to each other like children in a classroom. All inhibitions are left somewhere behind the electricity laugh and the karate-chop laugh, and you’re brought back to your inner child. Back to a time when you cared a little less and laughed a little more. Chelsea is not only naturally giggly, she’s a healthcare professional who is passionate about helping people find access to mental care. She leads laughter yoga across the Chicagoland area, and says laughter yoga originated in India, and has spread to more than 70 countries as a way to battle depression with endorphins and sense of community.
Chelsea: It forces you to revert back to that time when you didn’t care what other people thought. You’re in a safe space. A lot of times you don’t necessarily know the people around you, and you can kind of just let loose. And I think that’s a lot of what it is, is just kind of, we have to overcome that stress barrier that we’ve built for ourselves. That’s kind of the beauty of this, too, is that even if you are having a crappy day, which a lot of us are, you can fake it. And you can even fake it the entire time. A lot of times, you know, it becomes contagious and you actually do start laughing, but a lot of times you don’t. And you just kind of go through the motions. And the nice thing is, is that it doesn’t matter. You still should get that shift. You still should feel better by the end of it, even if it’s just a little bit.
Emily O: And talking about taking over that control, again. Can you talk about why that’s important for cancer patients?
Caitlin: You’re teaching yourself that just because everything’s awful doesn’t mean that you need to always feel awful. You have a level of control over that, and you can—you can do what you can to better your current state. And therefore, I
think, better the state of others.
Emily O: Have you seen people react—because you mentioned, too, like, laughing is close to crying. Have you seen different reactions other than laughter during laughter yoga?
Caitlin: A hundred percent. Yeah. Maybe not so much during the actual laughter exercises, but in that post part, when we’re kind of sitting, and we close our eyes, and we laugh, and we meditate. That’s where a lot—I see people start to let loose and start crying. And it’s not a bad thing. They—at the end of it those people are like, 'I feel great.' It’s a release. It’s—the fact that you’ve just spent 15, 20 minutes going through that act lets your body keep going and release maybe what you’ve pent up as crying. And that’s kind of a beautiful thing. That’s your body saying, 'You needed this.'
Emily O: Why is laughing important?
Caitlin: Laughing’s important. I mean, yeah. It’s a stress reliever. I think it’s—I truly think it’s a way to build relationships. I think it’s—especially something like this, where you go in cold and it’s weird, and you bond over it. You know, it’s—it’s an immediate tie to another person. You’ve shared something personal and something lovely and something fun. And now you have that connection. And it’s also a community-building thing. When you laugh with other people, whether you say two words to that other person or not, at the end of the day, you’ve had a community experience. And I think when it comes to working through an illness or anything comparable, there’s nothing better than that sense of community and that sense of uplifting that can come of a shared experience with a group like that. And that’s why I think it’s been so well-received here, is people are just looking for anything they can do to, a, give them a better sense of the day, and feel a little bit better, and feel a part of something. And this is a really interesting way to do it, and a really easy way to do it.
Emily O: Smiling on the sidelines of laughter yoga is LauraJane Hyde, the CEO of the Chicago Chapter of Cancer Support Community affiliate Gilda’s Club. She says facilitating fun and free expression can help survivors on so many levels.
LauraJane: I just think it’s the purpose behind what our mission is, and when you want to create an environment where people feel cared for and supported, and not judged, and free to be themselves, that brings out the best in other people. I see a lot of times members reaching out to different members who they haven’t met. Right? There are a lot of people that met each other today for the first time. And people come and they make connections and they leave, hopefully feeling better, feeling like this was a really good thing that they did today.
Emily O: What’s the importance of finding a community when you’re going through cancer treatment?
LauraJane: So that you’re not alone. To this point I’ve not been diagnosed with cancer, and I’ve seen people who are diagnosed, and I’ve known them before they were, or before their family was impacted, and at some point, you’re just alone. Nobody knows what you’re going through. And even though you have a community around you, there’s still those points when you are alone. So how do you get through those points? How do you—how do you go through it by yourself? And that means either as the patient or the caregiver.
Emily O: When you imagine a support community, you picture a place where you sit and talk about your feelings, right? At Gilda’s Club, they acknowledge that everyone needs different types of support. Where some might benefit from group therapy, others might prefer laughing voluntarily, or exercise or crafting. Places like Gilda’s Club and Cancer Support Community host a wide range of events and classes and sessions to help you bond with people who really understand what you’re going through. And to help you cope, however it is you cope.
LauraJane: We all have natural ways of dealing with challenges, right? Some people are information seekers. Well, the lectures are great. Some people really practice self-care. And that’s where yoga and nutrition and mind-body come in to play. Some people really need to talk. And they need to talk to other people. And that’s where the support groups come in. Some people just need to do something. They just need to do something. And so just simply finding a community to go to, even if they don’t know what they’re going to do there. So no matter how you identify as—in the way that you handle challenges, studies do show that support enhances your quality of life. Women with breast cancer who got involved in the support group lived 18 months longer than women who didn’t.
Laura: Hi, it’s Laura, your beauty consultant. What’s great about community is you can find it, really, anywhere. Whatever type of support you need, you can find your tribe. Or you can find others who truly understand what you’re going through. Take it from survivor Stephanie. She says finding a support group helped her through some of the challenges of treatment.
Stephanie: There’s options out there. There’s options where we can go and talk to other people. Somebody else that’s walked this walk that can be there. And the more we talk about it, the more we demystify it, and it’s like—you take that fear away. And that’s the beauty of being surrounded by those that have gone through this. I, as a survivor, can look at someone else and go, ‘Girl, I know what you’re going through. I know what that feels like.’ In a lot of ways, it’s very freeing when you can get to that point. Because as long as you keep everything to yourself, you keep it all bottled up, it festers, and it just manifests, and it just eats away at you. But when you start to get it out, and just talking about it, and recognizing that there is indeed strength in numbers. You know? It is. It makes all the difference in the world. To me, it made all the difference in the world. But I’ve also seen it in other people, too.
Laura: Ashley hadn’t known many people who had cancer. So she found a camp where other survivors connected and shared their experiences.
Ashley: That was really cool. Because that, I felt like, was the first time where I actually shared how I really felt about things and the hard times, because there were other people that understood and related to it. The whole trip was very eye- opening, because there were people who had brain cancer and terminal cancers of all different kinds, and it’s like—it was very humbling, too. But at one point, I remember when I was first there, I felt like, ‘Why am I here?’ Because I felt like—people say, 'Oh, if you have thyroid cancer, that’s the one to get, you know. So at one point, I was just kind of like, well, I don’t deserve to be here. Why am I here? These people are telling all these crazy stories and I haven’t been through enough, kind of thing. But by the end of it, I opened up about everything I was thinking, and then they’re like, 'Oh my gosh, no, you’ve been so—such a light and positive this entire time.' And they made me feel like, OK, I am supposed to be here. I’m here for a reason. So it was cool. Because I—you know, you always feel like—I guess with my certain kind of cancer, I always felt like, well I can’t complain because there’s people that have so many worse things going on than me.
Laura: Deanna wanted to find support but didn’t necessarily want to talk through her feelings. So she joined a running group.
Deanna: I, for one, wasn’t super interested in talk therapy or sitting in a circle with my peers just discussing it. And so what I found really helpful was a support group in New York where you didn’t actually talk. It was a running group. And it was really helpful toward the end of chemo and once I finished treatment and had to get back on my feet. It was the sort of thing where you showed up twice a week and you ran, probably anywhere from a mile to two miles. And most of the time, no one ever talked about their specific cancer, the type of cancer, the treatment. It was more complaining about the workout and grumbling about stretching. And it was a really nice way to find a sense of community without making it all about cancer, which I found already had enough attention in my life that I didn’t want to talk about it more.
Emily S: Hi, everyone, it’s Dr. Emily. Online communities can also help by connecting you to other survivors and caregivers, as well as experts and therapists. Whether you post on discussion boards about managing side effects, want to chat with a therapist from the comfort of your home, or want to share your story with loved ones, an online community can help you express yourself, and get encouragement from others at any time. Here’s how Csilla used social media to find support.
Csilla: I guess Facebook was a good way of me preventing a sense of isolation. There’s a giant network out there of women helping each other, and for that, social media, I feel like it’s great. I have a friend who I talk to. She had her breast removed. So she suffered a lot. I never met this lady, I just like—somehow the network—the network of your friends and of people who need your help really expands. But we encouraged each other. And we just kept calling each other, and—even just having an ear for someone to—to just tell you their pains. Because sometimes, let’s face it, you need someone who will understand you. And I thought I could be this person for this lady. That was very helpful for me.
Laura: Because people are more comfortable discussing cancer openly, Christine found posting questions about her treatment helped her gather useful information.
Christine: Don’t be afraid to post something if you’re into social media. People are willing to help, and people that you didn’t even realize would have information for you will send you a private message or will reach out to you, or say, 'Oh, hey, this happened,' and 'You might want to look into this,' or send me links to articles and stuff like that. Post and say, 'Hey, does anybody know of an oncologist. I’m looking for a recommendation.' I feel like the stigma of cancer used to be like, you don’t talk about it. And you whisper, and ‘that person that’s sick.’ Don’t be afraid or ashamed.
Emily S: And Brianna used social platforms to keep her caring loved ones up to date.
Brianna: Something that I love about when I got sick is that social media exists. Like, the power of social media. Being able to tell a bunch of people at once what’s going on in your life, instead of needing to individually tell a bunch of people. So when I first got diagnosed, my whole family was with me. We went to my apartment, and I had my parents call our close family—like the important people who should know. I even had them call some of my close friends. I was like, I just don’t want to say this over and over again, and I don’t want to have that, again, emotional burden of how someone is going to react to me telling them this. And then I just put out a giant social media post, and tried to keep track of everything through that and through a blog where I was just like, 'Here’s the update. Please don’t ask me about this in person. This is what you need to know.'
Emily S: While sharing these experiences online is helpful, keep in mind that your experience with side effects or even cancer in general is most likely different from others, and that only your doctor and healthcare team can give you the best advice for you.
Caitlin: To recap, here are the top three things patients and their caretakers can take away from this episode. Number one, understand the importance of your mental health. Don’t compromise your physical health by letting emotional baggage fester. Number two, ruminating, or spinning your wheels on something, can’t help you get through it. Instead of spending time worrying about negative outcomes, focus on the silver linings. Number three, it’s natural to have all kinds of emotions during your cancer experience. Be patient with yourself. Keep an open line of communication and seek professional help if you or your loved ones need it. Thanks for listening. Be sure to rate and subscribe, and tune in next time to hear:
Male: It’s more important than ever now to have a healthy mouth. Because it can lead to having a healthy body.
Female: Those flavors—every time I would try to eat it, it would just be like so much pain.
Female: Sugar, which I also like—I couldn’t taste it.
Female: You know, when we eat, there is—we don’t just eat to fuel ourselves. If we ate to fuel ourselves, we’d be a very healthy culture and civilization, but we hold a lot of emotional ties to food.
Emily O: Special thanks to the survivors for sharing their stories. This Walgreens podcast was clinically reviewed by Emily Shafer. It was written, reported and produced by me, Emily Ornberg, with Taylor Banasik, Lauria Locsmondy and Stefan Clark. It was co-produced by Caitlin Kiernan, author of Pretty Sick: The Beauty Guide for Women with Cancer. Follow her on social media at @CaitKiernan. Recording and mixing by Matthew Lejeune, with Connor Boyle, at Chicago Recording Company. For more oncology side effect help, visit Walgreens.com/FeelMoreLikeYou. To find oncology trained pharmacists and beauty consultants in your area.