Lauren Adams Hi, I'm Lauren Adams, a clinical program manager at the department of Social Work here at MD Anderson Cancer Center. Today I'm joined by my esteemed colleague, Cindy Parker, a social work counselor here at MD Anderson. And this is the Cancerwise Podcast. Welcome, Cindy, thanks for joining me today.  

Cindy Parker Hey, Lauren, thank you. 

Lauren Adams So, we've got a great topic to talk about today: how to support someone facing cancer, whether they're a patient, a caregiver, a survivor. This is definitely a question that we get asked a lot, so I'm excited to be with you to talk about this here today. We'll talk through what things are helpful to say and maybe some things that are not quite as helpful when you're talking to someone impacted by cancer, whether they're a loved one, a family member, a friend, or even a coworker. So, let's jump right in and let's address the elephant in the room of cancer. I think it's safe to say that most people really want to support a loved one who's dealing with cancer, and they really want to help it. But for some reason, it just feels so awkward and so hard. So, what is it that you think makes it so challenging to talk about this? 

Cindy Parker Right. I think it is so awkward and so hard because it's not something that's universal. Not everybody has cancer or is able to identify withit. And it can be difficult to know exactly what to say, you know, like what will be able to help this person or my loved one. 

Lauren Adams It's almost like, what if I say the wrong thing and make it worse. 

Cindy Parker Absolutely, absolutely. That's always a thought in the back of your mind, I'm sure. 

Lauren Adams And I think, you know, when it comes with cancer, like we see it a lot on the media, we see a lot of it on TV, you hear a lot about it. So, just in general, it brings up a lot of emotions and kind of a lot of fears and maybe it can be hard to kind of deal with that when you're also listening to somebody else about it. 

Cindy Parker Yeah, I think when you talk to somebody who has cancer, and who's experiencing it, yeah, sometimes it may be portrayed differently, and so you don't know the quote unquote right thing to say. I think that's probably one of the biggest things that people think is I'm going to say the wrong thing and then it's all going to just collapse, right? 

Lauren Adams One thing I'll tell people is kind of to let them take the lead, like the patient, because sometimes they don't have that space. Some people do not have the space and the place where they have the opportunity to talk about cancer, because it is awkward and people avoid it a lot. And so, sometimes people would, "Please, I just need someone to sit with me, hear about it, let me complain and just like give me the space to not be OK." But then also, sometimes people are saying, my appointments all day long, like my life revolves around cancer. Like, please just tell me about your kids. What movies have you seen lately? So, just like letting them lead, like is this the time to talk about cancer? Is this a time to just talk about the normal things we would do without cancer. 

Cindy Parker Absolutely. I love that. Yeah, let them take the lead. And it's not even about saying the right thing. Like you said, like sometimes it's just like, let me listen for a while, like vent or cry or laugh or do whatever you need to do. And let me just hold this space for you. That's huge. 

Lauren Adams Totally. 

Cindy Parker Yeah. 

Lauren Adams So, if someone's maybe thinking through, "All right, I'm ready. I want to hold space. I want to be here for you." What are, maybe some things that you could suggest to people to do something that's genuinely helpful in giving the support that they desperately want to give? 

Cindy Parker Right, I think for a lot of times, a lot of folks, they don't know the words to say, like we were just talking about, but they have the actions to show it, you know. So, they can go and say, "Let me do this job that you need done." Whether it be, you know, laundry or washing dishes or picking up your kids from school. And just those, even those acts of service can mean so much. 

Lauren Adams Yeah, and those are big things, too, that I think, you know, sometimes people don't just think about the logistical challenges that patients experience when they're going through cancer. And I'm saying patients, but too, it's, you know, people who are going through treatment, people who have completed treatment, and even caregivers. 

Cindy Parker Exactly. 

Lauren Adams There's just so much going on, and cancer is just taking so much of your life that all the other pieces of your life fall to the side, and that's such a good point of like, what can I take off of your plate? 

Cindy Parker Right. Right. 

Lauren Adams And I think some of it depends on who this person is to you, right? Like if it's a co-worker like please do not go into their house and do their laundry. 

Cindy Parker Don't touch, yes. Yes, be mindful of that. 

Lauren Adams But maybe like what is it that I can do? Sometimes, too, it's just saying it, right? 

Cindy Parker Yes. 

Lauren Adams What if it is a coworker, somebody that you work with like, "Hey, you need, I know you're taking PTO. Is there anything I can take off of your plate?" 

Cindy Parker Right. Absolutely. 

Lauren Adams Right. Like if it was a close friend, if you live with a person, laundry, right? 

Cindy Parker Right. 

Lauren Adams And if it's a close friend, someone you're really close with emotionally, they're keeping you up to date, sometimes taking on some of those tasks of just delegating and giving out the information because it's almost a full-time job. 

Cindy Parker Absolutely. 

Lauren Adams Just like letting people know what's going on, what's the diagnosis, what is going on now. 

Cindy Parker And it's hard to keep repeating that.

Lauren Adams Yeah. 

Cindy Parker Because it's so difficult to just like, like be a record player and just repeat the same, the same thing that you that you've talked about. So, yes, I think having that that person or that designated outlet to just kind of do a drop of everything that's going on so you don't to keep repeat yourself is really helpful and it's very it's a, it's way to take things into your own control as well, like I'm going to put this in my court now and tell everyone how I'm doing on my own terms, yeah. 

Lauren Adams Yeah. What other things could you maybe do? Like are there maybe gifts or things that you hear from patients that they find to be really helpful for them when they're going through treatment? 

Cindy Parker Yes. In fact, so, as you know, I work with the Adolescent Young Adult Clinic, which you are also very familiar with, the AYA Clinic, and it's wonderful to work with that team and the patients. And we always hear no coloring books, right? 

Lauren Adams Coloring books. 

Cindy Parker Coloring books, that seems to be- 

Lauren Adams The controversial coloring books. 

Cindy Parker Who would have thunk? But yeah, maybe no coloring books, or at least see if they have one. You know, I think one is sufficient. I know for a lot of folks, that's the time to start a new hobby. I hear so many patients, young adult patients, talk about crocheting and knitting, and I'm like, this is fantastic. I don't know the difference, but I'm sure it's amazing. And playing games or video games are also really big. So, just kind of, whatever thoughtful gift looks like to them maybe consume their mind with something other than cancer, other than their diagnosis. 

Lauren Adams So something thoughtful and meaningful, like related to them, their interests, their passion, the context of their life where they maybe need something to fill their time that's not as expending as much energy as maybe in the past. And what about for someone who maybe wants to give a little bit more of a practical gift? Like, they know this person is struggling to pay the bills. They know this person has a lot of logistical challenges going on in their lives. What kind of things could they give that would actually be helpful and actually be used? 

Cindy Parker I think for a lot of folks, even something as easy as ride share, that's really important for a lotta folks getting rides to and from appointments. So, maybe like ride share and then a gift card. Also, lots of places deliver groceries. So, things like that that might be helpful for everyday activities, you know? 

Lauren Adams That's a good point, too. So, I mean, definitely a gift card to a local grocery store is a good idea, but yeah, they do deliver so you could even take on kind of that mental load depending on the relationship and kind of order something recurring or, you know, when you're ordering your groceries kind of do that for them so it can be delivered to them. 

Lauren Adams Yeah, you can do that from anywhere, actually. 

Cindy Parker Right. I think it's just a thoughtful, a thoughtful, meaningful type of gesture that really goes a long way and it takes something off, off their plate, off the patient's plate or the caregiver's plate. 

Lauren Adams Yeah. 

Cindy Parker You know, they, they're consumed with so much and the last thing they want to think about is, "Oh I got to get groceries." 

Lauren Adams And even finding someone to do those things is a challenge. That takes mental energy to say, let me now find someone to do these tasks for me. So, if you can offer, say, "I can do this. I can do that. When is a good time to do this? Is it more helpful to do A or B?" 

Cindy Parker Right, exactly. 

Lauren Adams That takes away just that mental load. So, it's almost like two gifts in one. You're taking off that mental load and then you're doing something for them. 

Cindy Parker I think, too, one thing that's been mentioned to me, this is, I just came to mind, but like letters, you know? Like just simple gestures that we forget about, you know, saying, "Oh, I'm thinking of you." Things of that nature that can really, again, mean so much and be so impactful. Just those simple gestures of I'm thinking about you, I am here. 

Lauren Adams The lost art of letters. 

Cindy Parker Right. 

Lauren Adams But texting is a good idea, and you know that reminds me. I've had a lot of patients talk about, um, just you don't have that emotional energy when you're going through it. If you're a patient in the midst of it or if you're a caregiver who's doing a million things each day, right? And so, on the one hand you need a lot of support, on the other hand you don't have time for conversation. Some patients just say how huge of that support it is to someone reach out to them, just checking in and making it clear, like, "Hey, you know, I just want to let you know I'm thinking about you. I know you had that surgery coming up. Please do not at all feel compelled to respond. I just want to know I am thinking of you, you know, hope things go well." Or even just, "Hey, you know, here's a funny thing I saw today. I know you're busy. I know I can't reply, but this made me smile. I hope it makes you smile." Because then you're giving them that support that they need. And there's not that emotional need of I need to now like, respond. I need say thank you, which, on the one hand, patients say, like patients and caregivers say, "I appreciate the support, but I do not in this moment have the emotional energy to say, 'thank you for this' or 'everything's going well.'" You know, so just knowing that this support is a one-way thing, I'm giving you the support. I do expect anything back can be just so helpful for the patients. 

Cindy Parker I agree a hundred percent. I think I think just that that being mindful through all of that is, is just huge. 

Lauren Adams What are other things you can say that's helpful to kind of show that support when you're talking to somebody who has cancer. What are the right things to say, or things that are helpful to say? 

Cindy Parker Right. The right things to say. I think validation is huge when you are speaking with someone and you hear what they're saying you're able to say, "That is valid." Right? Whether it's sadness or it's anger or it's joy, validate those feelings. We're all human regardless of what we're going through or what our health looks like, so. But to be able to, to respond to somebody and say, "That makes sense that she would feel angry or happy about that." Right? And just validating and listening again, going back to listening, sometimes it's not about saying the right things, but just doing the right things, quote unquote, right things which may be just listening. 

Lauren Adams Yeah, listening and holding space. And patients talk so much about that. And it's just interesting, you know, we talk about validation, holding space, sitting with someone and being with them in that moment. And just, I think a lot of people, they really want to help. And when you think about helping, you think that a grand gesture, I'm taking you to these appointments. I'm doing all these wonderful things. And it doesn't feel like just sitting there with them is so helpful, but that is the thing. Cancer patients, patients, survivors, caregivers, and just people in general say that is missing. There's not a lot of times in general that you have someone who's just willing to sit there with you and acknowledge, like, this sucks. This is hard, and it's okay to feel that way, and we can feel it together. I think, you know, we have a tendency because we love people, and we care about people. I want to make you feel better. If you're feeling sad, I want to make you happy. If you are angry, you don't need to feel angry. But just letting them feel that way and knowing that it's OK to feel that and kind of working through it. I'm here to support you working through. 

Cindy Parker Right. 

Lauren Adams It just seems, you know, so small but really makes such a huge, huge impact So, I love that the validation, I would agree. That's probably one of the top things that you can do, and you can do that anywhere on the phone, text, in-person, face-to-face. 

Cindy Parker I think also allowing, Lauren, like you said, just holding that space for them, but allow this to be their time, right? I think sometimes we get in the space where it's like, "Oh, okay, well, my instance might be a little worse," just to make you feel better or something. You know, you compare those instances and you're like, "Well, I'm going to one up you." But I think that a lot of times it is sincere to just let it be their time and to let them focus on what they need to focus on. 

Lauren Adams Yeah. I think we all do that from time to time, right?  It's almost like an instinct to try to connect, but you're right It doesn't always feel like connecting in that moment. 

Cindy Parker Right. Right. 

Lauren Adams Because all experiences with everyone's cancer is different. You could have somebody who has the same diagnosis at the same age the same treatment, and their experience is totally different. So, it's just such a good point to let it be their story and hear from them. Like what is your experience specifically? 

Cindy Parker Right. Right. Absolutely. Let it be their story. I like that. That's good. 

Lauren Adams I think people, again, they really want to help but sometimes it's easy to want to take away the pain or take the problem. 

Cindy Parker Yeah. 

Lauren Adams Kind of that problem-solving. So, I think that's the instinct that many of us have in general is to kind of solve the problem or make it better. And so, the emotional piece is so helpful. Finding a balance, I think, can be so important, too, right? You want to be able to give that emotional support. You want to be there for them. You want let them cry if they need to cry. And also, you know, if you have the time to take them to an appointment and they don't have a ride, that's valid too. You don't want to be listening to someone, you know, who needs help and not helping them. And so, for that, I usually just say, like, you can ask. 

Cindy Parker You can ask, absolutely. Yeah. 

Lauren Adams You can just say like, "Man, it's a lot going on right now. Do you need me to listen? Do you need me to cry with you? Or is it more helpful if we figure this out together?". 

Cindy Parker Yeah, up front. Do you want feedback? 

Lauren Adams Yeah. 

Cindy Parker Do you want me to just listen? How can I help you? Like, yeah, absolutely. Like, like let's problem solve? Oh, just listen? OK, we can do that too. 

Lauren Adams It sounds so simple when you say that but in the moment, it can feel like I should know what to do. But in reality, you know, sometimes people need you to check in on them and say, "What do you need?" And that gives me the opportunity to think and reflect, hmm. What do I need it? You know what? I just need to cry. 

Cindy Parker Yeah. 

Lauren Adams Or you what? Actually, now that I've talked it out, I realized that there's this one problem and maybe I know what you do or maybe I can use your help doing, getting what I need to do. 

Cindy Parker Exactly. 

Lauren Adams But then you know that the help that you're giving is supportive and helpful. It's what they want. It's what they need and, you know, we're not having to be a mind reader of guessing what's most helpful in this moment. 

Cindy Parker Another thing I thought of when we were talking about tangible items we can give, I know in the AYA group, they talk a lot about Amazon wish lists. 

Lauren Adams Oh, that's a good idea. 

Cindy Parker So, it's something that they take time and say, "OK, these are some items that could really help me during this journey." And that way, when somebody comes and says, "How can I help you?" Oh, "Here's my list. Here's my Amazon wish list. Feel free to go take a look and you can help in that way." Whether it be ChapStick or lavender or whatever may help them during this time. 

Lauren Adams That's so true because sometimes there could be some obscure side effects that you know nothing about. You saying the ChapStick made me think of that. There are some individuals who, you know, dry skin and things like that come up. And so, maybe that's not something I would ever think to give to a friend going through cancer, but they say, "Man, I'm so dry I need some lotion please get me a nice one." You know, and something that maybe I wouldn't buy for myself but would appreciate coming from somebody else. 

Cindy Parker Exactly. Exactly. 

Lauren Adams And there's a lot of resources out there that kind of help with that as well too. So, of course you can go specifically to those websites and make your own list. 

Cindy Parker Right. 

Lauren Adams And there are a lot websites for that. But there's also ones that have, that are made for individuals who are going through something, including cancer, but they're just kind of more, some of them are more general for any life change or life stressor. And so, they have those wish lists. They have almost like, a blog where you can kind of post what's going on. And they have like a calendar for like meal trains and things like that that you can set up and those can be really helpful. Again, so that's something an individual can choose I want to make this on my own and manage it or even that's something if this is someone you're close to, you can offer to help and just say, "Hey, you know, I heard about this great website that helps you just navigate your support. Just rally your team, rally your friends. Do you want some help setting it up? You know, I can help you I can send you the link or I can even manage it if you want me to be in charge of it, to field the questions, so that's just one less thing you don't have to deal with?" Of course, make sure they are leading it, right? It's the level of that they still have the say of how much information is being shared, who's sharing it, and when. 

Cindy Parker Right. 

Lauren Adams But you may be able to just, that's a huge load to take off someone's plate. 

Cindy Parker Also field some of the questions, like you were saying, like some of those questions, let them come to one person and they can take care of that. Another term that we were talking about is grief tourism. 

Lauren Adams Grief tourism. 

Cindy Parker Yes, and how some folks, they take it very seriously and they come to see a patient and they take a picture and maybe the patient doesn't look too good or just finished a treatment, but. But hey, that one individual looks really good in that picture, so it's going to go on social media. 

Lauren Adams I think that goes back to the same thing of let them be in charge because some people really want to be open and they want everyone to know what they're going through because they feel you know they have a large support system that they trust and they'd want everyone to know versus other people are a bit more private and they kind of want to deal with things on their own or maybe there's just people in their life they don't want to know what's going on. 

Cindy Parker Exactly. 

Lauren Adams Just about kind of the communication. 

Cindy Parker Communication, yeah. 

Lauren Adams Which makes me think of some controversial terms that I've heard of, too, speaking of being individualized. 

Cindy Parker Yes. 

Lauren Adams So, there's a lot of terms that I hear some patients love and some patients hate. So, even things like survivor versus thriver. Being a cancer warrior, being an inspiration. So, I hear patients who use that term and they love it. And I have some other patients who hear it, and they say, "That's not my story." 

Cindy Parker Exactly. 

Lauren Adams What are your thoughts about that? How do you deal with that? 

Cindy Parker Absolutely, I think that's such an important piece to take away is every, this is their story, their individual story, and they may or may not resonate with a word. I was with a patient the other day and accountability was not what they wanted to hear. So, we had to reframe and say, "I'm here for you to help as you try to get from one point to the next during this journey, let me be here for you. And we'll just, we'll do the script like you want it." So, maybe somebody doesn't resonate with praying, or they don't resonate with speaking about the universe, but they resonate with other things with maybe being mindful. I'm going to send lots of good vibes your way or being mindful of what does help them and the words and the language that they do feel best describes them. 

Lauren Adams And you can, I think, mirror that language. So, if they're talking about themselves as being a cancer warrior. 

Cindy Parker Right. 

Lauren Adams You're a warrior. I'm here for you. We are fighting in this together. If that does not reflect how you feel, you know, and a lot of people don't, and that's totally okay. I'm not going to use that term with you. 

Cindy Parker Right, exactly. Exactly. 

Lauren Adams It's just I think part of it depends on just the individual, their experience, what they're going through, and it changes. Definitely. I know a lot of people who resonate with some language. Earlier on when they're newly diagnosed, and as things change, their experience is different and they no longer view themselves or their situation in the same way, and that's okay, and I think it's about following their lead and maybe you can even ask them. 

Cindy Parker Ask for sure. I think too sometimes it comes from a fellow patient, from another patient, it may not be as trite, right? But if it comes from somebody on the, who may not be experiencing their own cancer journey right now, it may seem a little fickle, you know? But so being mindful, yeah, whatever they say or the verbiage they use, use that. That means, that, that means something to them. 

Lauren Adams Tangentially related, not so much about the specific terms, but maybe more of the approach, I'm thinking of a term toxic positivity. I'm sure you've heard of this. 

Cindy Parker Yes, oh my goodness, toxic positivity. 

Lauren Adams Tell us what that is. 

Cindy Parker So, it's being positive, it can be good and very beneficial. It can also be toxic. If we can use it too much to the point where it's like, "Oh, well, I understand you have cancer, at least you're not bankrupt," you know? Or "I understand, you have cancer, you're going to get through this. You're so strong. You're so positive. You can get through anything." Well, that's a little too positive. And when you're not feeling the best, you might not want to hear that. That can probably do a little more harm than good when battling something. And sometimes people don't want to be strong all the time and that's okay. It's okay to not be strong 24/7. There are some days when we need to just make it from one minute to the next. And that's all that's good. 

Lauren Adams One moment at a time, for sure. 

Cindy Parker One moment at a time. Absolutely. 

Lauren Adams So, I think it's good. We just want to get that balance of the hope and the empathy. And again, going back to asking, right? What do you need right now? Do you need me to sit with you? Do you need me to cheer you up? Do you need some encouragement because I'm here for you either way, regardless of what you need. 

Cindy Parker Right, exactly. I think that's great, just showing up and being there, absolutely. 

Lauren Adams So, you shared some good tips of some things that can be really helpful to say and some things that could be very helpful to do. What are some things patients talk about, caregivers talk about that they find to be a little bit less helpful? 

Lauren Adams Right. Like, "My grandfather had that," or "Yes, you'll get through it. I know you can. My 65-year-old neighbor can do it. You can do it.". 

Lauren Adams Kind of going back to comparing it. 

Cindy Parker Comparing it. Yes. 

Lauren Adams Comparing it to someone else's experience. 

Cindy Parker Absolutely. Absolutely. And the toxic positivity as well. 

Lauren Adams And one thing that I hear, I think this comes from a really good place and I think the intent is there, but just tweaking it a little bit to make it a little bit more helpful is when people just say, let me know how I can help. And you may be so genuine in that moment of wanting to help, but then the task, the mental energy now falls on the person you're talking to. So, if it's a patient or a caregiver, now they have to kind of take the energy to assess, what are all the tasks I have to do? What are things that I can take out? You know, what are they actually like, are you actually wanting to help me? Or is this just kind of you trying to be nice, like a social nicety. 

Cindy Parker Think about what's important in your life and what can be daily tasks for you and know that most people have to deal with those same tasks. So, offer the help that they may need for sure. So, we've gone over things that offer support to other people, but what do we do if we need the support? 

Lauren Adams That's a great question. Yeah. So, I mean, I would want to empower everyone to get that support that you need. I think we can start with the assumption that most people who care about you, they care about you. They really want to help. And sometimes it's kind of shifting that thought of, "I feel like I'm a burden asking for help. I feel I'm, you know, I don't want to ask for too much." To give them the opportunity. It is okay to ask, and it does not make you a burden. And again, sometimes you're giving someone the opportunity to help because a lot of times people feel helpless. They're just sitting to the sidelines watching and they want to help, and they just need a little bit of guidance. I'll also give the caveat, too, that you kind of touched on this a little earlier that it's a little bit different if it's someone who's gone through this or not. Sometimes the support you want is from people who've gone through this and that's okay. So sometimes people want support. They have great friends, family and coworkers. Yes, use that support, utilize that support. Access that. That is wonderful. Sometimes you also want to find some peer support. There are things like support groups. At MD Anderson, we have myCancerConnection to link you with a patient who's already gone through something like this. Patients, it's open to patients and caregiver, survivors. There are even things like cancer camps. So, getting connected with people who've gone through it, it can be a different type of support. And then of course, we talk often about this at MD Anderson in the social work department, sometimes getting connected with a licensed mental health professional, a therapist, such as a social worker, psychologist, or even a psychiatrist. Because it's good, you want you want to kind of get the full range of support that you need from your natural support kind of keeps inthat normalcy, the peer support from someone who gets it, and sometimes some of that professional support for the challenges that come through that you need a little bit more help navigating, and just kind of covering the full, the full range of the cancer experience. 

Cindy Parker Absolutely. As we know it's not just the physical body that goes through a cancer journey, but it's the mental piece as well. And it takes so much. 

Lauren Adams It takes a village. 

Cindy Parker It does take a village, absolutely. 

Lauren Adams Well, thank you so much for joining us, Cindy. This has been a great conversation. I've had a lot of fun, and I hope you have, too. 

Cindy Parker Yes, thanks so much, Lauren. 

Lauren Adams And thank you to our listeners for tuning in today. If you enjoyed this episode, be sure to follow or subscribe on Apple Podcasts, Spotify, YouTube, or wherever you get your podcasts. And don't forget to comment or review. For more information or to request an appointment at MD Anderson, call 1-877-632-6789. Or visit MDAnderson.org. Thank you for listening to the Cancerwise Podcast from MD Anderson Cancer Center.