What Do You Say When Someone You Love Has Cancer?

#007 A cancer diagnosis affects more than the patient—it impacts everyone who loves them. But when someone you care about has cancer, what do you say? What do you do? And how can you truly help?

In this episode of the Hope Forward Podcast, Lisa Spain shares lessons learned from 20 years of supporting cancer patients and their families. She offers practical guidance for caregivers, family members, and friends on how to provide genuine emotional support, communicate with compassion, and be present when someone you love is facing cancer.

📒 Show Notes & Resources 📒

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Transcript

SPEAKER_00 0:00

It has been 20 years ago this month when I was suddenly faced with reality that my very best friend, a never smoker, a 47-year-old, what we thought healthy individual was diagnosed with lung cancer. Rex Anna and I traveled everywhere. She loved life. She had the biggest laugh. She loved a good joke and she laughed often. She was super loyal to her friends and family. We had so much fun together teaching and coaching. Rex Anna lived in Austin, Texas, and I lived in Houston, Texas at the time. So Rex and I invited Rex Anna to move in with us while she was being treated at MD Anderson. That was the very first time I was completely confronted with being a caregiver for someone that was actually fighting for their lives. I quickly learned the best ways to support, care for, encourage, and give space to someone that was battling cancer. But trust me, it was completely trial and error. Since then, over this 20-year period, I've supported so many patients and families in their journey. And I continue to learn. You guys, literally, I learn every single day. Today I even sent messages to friends that are battling cancer and asked them what they would say to somebody and what were their needs as they were battling cancer just because I wanted it to be completely fresh in my mind. I wanted to make sure I am staying totally relevant to this subject. Okay, when it's somebody that we love, what do we say? What do we do? How can we help? Many people want to support a patient, but are afraid of saying the wrong thing. Others become caregivers overnight and you're thrown into that situation just like I was, and we're completely unprepared. The truth is, you guys, that cancer patients rarely expect perfection. They just need the most present, understanding, encouraging, and genuine support, somebody that's truly authentic to them. Today we're going to explore the practical ways to communicate, to encourage, and to care for someone facing cancer. I have four things that I want to share with you guys today that are absolutely needed for patients and caregivers. Number one, let's just start with what's needed. This is what the patients need. Patients often need emotional support more than advice. Think about that. I have to really work at this because I tend to always want to give some advice, give suggestions, but you guys, patients really just need encouragement. They need to know that when somebody hears the words, you have cancer, you need to understand their life changes instantly. Patients experience fear, they and they experience uncertainty, it's grief, it's anger, it's anxiety. Sometimes it's complete numbness. And often they experience isolation. What's crazy is there's so many people across this world that are battling cancer, yet when you receive that diagnosis, it feels so isolated, so lonely. And many feel that everyone around them wants answers. Everybody wants to know what are you going to do? What kind of treatment are you going to have? What's the diagnosis? But you guys, many times the patients don't even have those answers themselves. And all those questions can be completely overwhelming. Sometimes we just need to wait for the patient to give us the information. You guys, it's really important that we validate their feelings as well. Because all of these feelings that the patients are experiencing are absolutely okay to have. It's real and it's authentic. So let's break it down. What I mean, what do I mean when I say emotional support? You guys, they need to be heard. They need to know somebody's really authentically listening to them, that we're leaning in. I heard you say, understanding what they're saying to me. Sometimes, again, it's not about the solutions, it's just somebody being willing to listen. Here's some examples of things that you could say. Tell me how you're feeling. I'm here to listen. You don't have to pretend to be okay with me. I'm here for you. Even if you want to just sit and be quiet, I'm good with that. You guys, patients need to know also that they want to be seen more than just as their diagnosis. That's really important. They want to maintain their own identity. When talking to them about that, you can ask about families, their hobbies, you know, their work, their goals, steal, favorite activities, anything that's a conversation beyond just the cancer. Cancer is a part of their story, but you guys, it's definitely not the entire story. And they still want to step into their life. They want to live it. They desperately want to be normal. Another thing to remember when you're thinking about what patients need is the support needs to be consistent. Many people show up immediately after the diagnosis. There's the meal trains, there's everybody checking in. But now what's really encouraging is research is making a monumental difference in a patient's diagnosis. Patients are living so much longer, but that doesn't mean treatments are going away. It doesn't mean the cancer goes away. It's still there. And so often our support, our consistency, it fades over time. So you have to ask yourself, how can I be more consistent over the long haul? There are so many hard moments in the journey for a patient battling cancer. It's especially tough when everybody else is going back to normal and you're still fighting. That's really a tough thing to swallow. And that's when that consistency really matters. That's when we need you to lean in and support them in a way that shows that you want to show up for them. Next, what patients need, we need to offer specific help. Too many times we say, let me know what you need. I'm here if you need anything, right? I do that all the time. You guys, we need to try to think that differently. We could say, can I bring you dinner on Tuesday? Hey, you want to go get your nails done today? What if I pick up your groceries for you this week? Place your water. I'll drop by and pick them up. Can I take your dog to get groomed? We need to be more intentional about specific things that we ask instead of saying, is there something I can do? Remember that in a patient's mind, whether it's right, wrong, or indifferent, it's still in their mind. They feel like they're being a burden to the people that are around there because they're already a catalyst to so many changes in their family's life. And so by us saying, is there anything you need, rarely are we going to get a true response to that because they are not trying to ask for something else. So we need to be specific. We just need to lean in and say, hey, let me do this for you. Let me take care of this. Finally, when we consider what a patient needs, they need hope, you guys. They need us to be positive and encouraging, but not where it's not based on reality, right? Hope doesn't have to mean a cure. It doesn't mean that, you know, we expect everything to change overnight, but hope, hope can mean more time for patients. It can mean better treatment, it can mean less pain. Maybe it's just those meaningful moments that they have. Hope can be tomorrow. There's so many things that patients can look to when they're thinking about hope. Here's what Melanie shared with me. Melanie is a bifat biphasic synovius sarcoma patient. Okay, I got that down, right? I ask several patients what they need during this time. And I wanted to get answers today. I literally text these folks this morning. Here's what Melanie tells me. Just being there. You don't always have to know the right thing to say. The text, the check-ins, the prayers, simply sitting with me mean more than trying to fix everything. Treating me like me, not just someone with cancer. You guys, man, that is so, so on point. Melanie steel goes on to say, sometime, some days I want to talk about it, and other days I want to laugh and forget about it for a while. Patience, kindness, and presence make a bigger distance difference than people know. Man, I Melanie, I'm so grateful for your words, such wisdom that you're giving us. But you guys, did you hear? Sometimes just simply sitting with me can mean more than anything than trying to fix it. I'm trying to say that to myself right now because I desperately want to fix it. I want to make things better, right? It's our heart for others that we want to do that, but some things we just can't fix. I also asked Carla. Carla is a lung cancer patient. This is what she had to say. First, my incredible gratitude to caregivers, family, and friends. The journey is less terrifying because of them, but the journey is still really mine. Be supportive, but don't tell me everything's gonna be okay. Be realistic and pragmatic about my future. I'm gonna stop before I finish saying what Carla says because what she says right there is so important for us to remember. I do find myself all the time wanting to say it's gonna be okay, it's gonna be okay, but sometimes that requires us to just breathe and listen to them and lean in because in the moment they're not feeling like it's okay. Carla continues to say, I will continue to fight the fight, I will continue to advocate myself, and I will surround myself with the best, the most trusted medical team who understand my wishes for treatment or lack of. And I need and appreciate support through all of that, understand and accept my wishes and love me. You guys, when I am counseling and supporting families of patients that are battling cancer, one of the things that I tell the patient is once you determine your treatment protocol, once you've said yes to whether it's radiation, chemo, immunotherapy, a targeted therapy, whatever it is that you've decided with your care team in collaboration with your family, your care team, then you've got to block out the noise. And you guys, those of us that love the patient so much, we have to realize once they've made that decision, then we need to circle the troops and support them. It's really critical, not only to their mental well-being, but just to the journey itself. I asked Paige. Paige is a young cancel warrior. Let me tell you, she's battling lung cancer. And when I ask her the question, here's her response. She said, Oh man, that's such a hard question. I think for me, I just want some empathy. I feel like a lot of people around me try to be strong, and so they don't show emotion, but I want to know they're hurting with me, that they are also sad too. Again, I'm gonna stop and call a timeout. First of all, Paige, you are such an incredible individual to be so raw and transparent in your feelings because sometimes all of us need somebody that just care about us, right? And that just stop and give us a hug and say, Girl, I got you, right? And that's what we got to do. I find myself because I do, I always try to be so positive, so encouraging. You got this, you're amazing, you're a warrior, right? I try to do all that. I also try to be so strong for them and not let patients see my emotions. And sometimes I forget that in my encouragement and in my ability to try to stay so positive for them, I forget to let them know that inside I'm desperately aching for them. I'm desperately sad for the journey that they're going through. You know, sometimes it doesn't need to be us going home and being sad and crying on our own. Sometimes it's okay to circle up with our patients, our friends, and our family and just let it out. Whether it's the cry, the scream, whatever it is, let that emotion out. And it's always better when you do it with somebody else. Paige went on to say is I want the caregivers to know that being a caregiver is different than being a spouse or another family member. There are two different roles. Just because you're being a good caregiver doesn't mean it's the role of a spouse or a parent is being met. Wow, that is a mic drop moment, Paige, because that's so true. And it's so difficult because I was the caregiver for Rexanna, and I know so many other caregivers, but here's the deal: you're caring for the patient, you're leaning in on what's going on, you're trying to help them in any way, but there's still this whole identity of a child, a parent, a spouse that we needed to lean into and live in, and that's just life. And there's certain barriers too, the parent to the patient of what you say or don't say or what you wouldn't normally say. So really think about those roles. You've got the caregiver role, but then you have the role as a family member. Paige went on to say, I really want people to know not to compare my journey to other people's cancer journey. That's a good one. I've had family tell me that they knew someone else who faced cancer and they were always much happier than I am. I also want people to know that I'm not just grieving cancer. I'm grieving a change to my entire life. Having to give up a career, being unable to have children, it's a lot and it's really heavy. Paige, again, man, you are really validating today the importance of us leaning in and listening and understanding the moment, the time at where every patient is. Because you guys, when a person's diagnosed, it depends on where they are in life, all the different challenges and all the different things they're having to figure out. I was talking to somebody last week and they said, hmm, I'm juggling. Do I save my retirement for retirement or do I use it for cancer treatment? Do I save my children's college fund or do I use it for cancer treatment? Depending on where you are in the journey, these are real questions. It's not unreasonable to ask. Obviously, we want people to lean into the treatments. We want to lean in to take care, but people are having to make super hard decisions. And as caregivers, as friends, as families, we need to stop and breathe and realize it's not just an illness, it's not just they're nauseous a day, it's not just a surgery for a day. It is decisions that's impacting their entire life. I have another friend, friend, who's an amazing individual. She teaches me on a daily basis. I just love her and the feedback she gives me. Today she shared with me, I would say not to be afraid to talk about it and act like it's a death sentence, but to be encouraged to treat me the same way as before. I was not diagnosed with pity. Fran's so right. Again, everybody's different, but Fran wants to keep living her life and she's doing a great job of it with an amazing family, an amazing sport system and friends. You know, let people lean in to who they want to be during this time in their life. I asked Pete what he thought. Pete said the main thing is I really don't want to talk about it all the time. I want to try to live as normal as possible and treat my treatments as an appointment that I have to do. And he's so right. Again, for him, he doesn't want to talk about it. So again, if we just learn from our patients to listen, to ask, what do they need in this journey? How do they want to communicate? They're gonna tell us. Sometimes we're just afraid to ask, sometimes we're concerned about the conversation. But you guys, you're gonna feel so much better when you have the conversation, and so will the patient because it's gonna open up a whole new world of possibilities. You guys, these people are real. They're real patients, they're sharing their heart, they're friends of mine. One thing I remind you of that cancer diagnosis impacts everybody differently. It impacts the entire family unit, it impacts everybody in such unique and different ways, not only biologically and how we respond to the different medicines, but emotionally, mentally, physically, all of it's impacted and it's very different. And unfortunately, cancer leaves a wake in its path. It's impacting, it impacts our dispositions, it impacts our perspectives. We could think that we've always been a cup overflowing person and suddenly we find ourselves in despair and sadness. It brings a unique fear to our psyche because suddenly we're afraid if something's different in our body. Oh my gosh, is the cancer progressing? Is it moving? Is it back? There's so many questions and it adds to the anxiety of our life in such a profound way. It impacts careers, it impacts retirement plans, it impacts relationships, and everybody absolutely navigates the journey differently. Ageic diagnosis, also the point at life in which you're impacted, definitely impacts the way we approach the diagnosis. It doesn't diminish the individual journeys, they're all different, but we just need to acknowledge at that point in time how it's very different. There are different needs, there's different decisions to be made, different conversations to be had. Also, from the diagnosis, it really impacts how you respond to it, right? So just remember ask your friend, ask your family member, ask them, tell me what do you need? Instead of saying nothing, please ask for the conversation, ask them for how you should respond. You guys, I'm not saying all this to be a Debbie Downer, I promise, but I wanted you to know the reality of it because sometimes this whole conversation is awkward. Sometimes it creates the silence and the quiet where we used to be the best of friends. I know with Rex Anna, it was so hard. And sometimes she just wanted space. Sometimes she wanted to talk about it. Sometimes she wanted to be angry, you know, and just be frustrated. But we had to learn ways to communicate where she could share that. And I knew when it was the time and space that I needed to give her. But what we all need to remember is what's amazing about all of this is when you think about everything I've outlined, all the repercussions of this diagnosis, and when you think of all the people, the family, the friends that we know that are battling cancer, this should give us a renewed sense of how incredible these individuals are because they are still leaning into life. They're still finding moments of joy, they're still showing up at their place of employment, they're still showing up to family gatherings, they're still showing up to events, and you guys leaning into the moments of life that are important to them. All of that, everything on their plate, they're still navigating life and finding ways to laugh, to smile, and absolutely capture those moments that mean the most to them. So that was our first focus, you guys, considering absolutely what our patients need. We gotta make sure we understand and consider what they need. The next, I just want to take a couple of minutes to talk about things of what we can say and what we shouldn't say. And I'm gonna just tell you right now, every single one of the things of not to say, I've said them millions of times, and I probably said some of them yesterday, you know, when I'm talking to patients. I'm a learning in process kind of girl, so I'm trying to get better. But I want to start with just some suggestions. First of all, just letting them know I'm here, validating. I know this must be incredibly difficult for you. Help me understand. Let me know what I need to do. Let me know what's the best way to ask for what you want, the conversations you need. How can I support you today? You don't have to go through this alone. Just keep reminding them that. I'm thinking about you. Ask, would you like to talk about it? Just be upfront with that. They'll tell you, I don't right now, maybe later, or never at all. Another thing to think about is there are things that we really shouldn't say. And I'm like I said, I told you I've said every one of these. Some of these just come out of our mouth naturally because we're really trying to be thoughtful and considerate, but we don't understand how it impacts the person that we're Saying it too. So these are things what not to say. Everything happens for a reason. This is well intended, but sometimes it really invalidates the pain that they're dealing with and it adds to it. Like, why me? Why does it happen for a reason for me? So we have to be really cautious about that. Um, this one I find myself saying a lot, stay positive. You've got this, you're a warrior, right? Staying positive. Again, we have to be careful about this because we need to acknowledge that the patient can have a bad day and they don't have to suck it up every single day and every single second. So instead, maybe you know, we could say it's okay to feel whatever you're feeling. It's okay today, you know, and then we just help them get past that time, that moment, that week, that month, whatever the difficulty is. Another not what not to say, and this came up in some of the feedback I got of the earlier comments I made. My friend had cancer, and you know, avoid turning their experience into somebody else's story. Like I said before, you guys, our molecular makeup, how we are designed is a miracle of our bodies in and of itself. But every single person deals with cancer, again, physically, mentally, and emotionally, very different. And so we need to be very cautious, even if it's the same type of cancer, how we navigate that journey looks very different. I've already mentioned this one because I say it a lot, but I wanted to put it out there to remind myself you're so strong, you're so strong, you're doing amazing, you're a warrior. It truly is intended as a compliment because I say it all the time. But here's what I want myself to think when I say that. I don't want that patient to feel pressure that they have to be strong every day, that they have to be a warrior every day. And sometimes me just saying you're so strong, you're amazing, may make it feel like or appear that I'm putting pressure on them to feel strong all the time. And I want the people that I support to know they can be vulnerable around me. And as a caregiver and as a friend and a family member, you want the same thing. So what I'm trying to do is I'm trying to say something like, your strength inspires me, but you don't always have to be strong. I'm inspired by the strength you display every day, but you need to give yourself a break. Something like that to really help them understand it truly is an inspiration to me to see these warriors every day, but I don't want them to feel the pressure that they have to be that warrior every single second. Another one that really gets to some of the patients is if you say, Man, you don't look like you're going through cancer. We say that because we're trying to give them a compliment, but man, that's really tough for the patients because what's going on in their body is creating that anxiety. So much is happening. They're wondering, is the scan going to be clear? Is the cancer progressing? Because all of it's not visible to anyone, not to us, not to the patient. So instead, one of the things that we could say is, I know you're going through so much, but let me tell you, you look incredible today. So acknowledging the fight that they're in, the journey they're in, but then acknowledging how great they look because it could have been a really rough morning and they still showed up, they're there, and they're present. The last of what not to say is starting a sentence with at least. Think about that. At least they caught it early. At least it's treatable. You guys, that again is so well intentioned, and the patients hear this, but again, it can be very minimizing because they're like, I don't care if it's at least or if it's treatable, it stinks, it's me. I don't want to be navigating that, right? And so they already have the frustration, the anger, all the emotions that are going with it. So starting this sentence without least is really tough for those patients to hear. So as we're wrapping up this second area that I focused in on what to say or what not to say, again, gang, I just want you to know a million times I've said all of these things. We got to just breathe. Trust me, it's not a gotcha exercise. You know, I have to say to myself, Lisa, you've done every one of these over and over again. Just do your best. Try to be conscious of who you're talking to, who you're speaking with. Because again, what will work and what will work in a conversation when one patient may not work with another. And remember, I'm just sharing my own experience. Yours may be very different. It's also important to you for you to remember. It's better to say something than not at all. So don't hesitate because you're worried about how to say it or what to say. It's really better to have a conversation. The next thing I want to say is number three. Number three is about supporting our caregivers. Obviously, I started this talking about being a caregiver for Rexanna. I've been in this journey a long time, so I've been blessed to be a caregiver for other individuals. But you guys, our caregivers need our care too. They need our support too. Caregivers are often the forgotten ones, and they're the ones that are managing so much. They're managing appointments, they're managing the medications, sometimes the insurance, they're managing the work responsibilities, maybe all of the errands, the children, the family needs, they're and they're managing their own fears. So we really need to think about them. And you guys, they really frequently feel guilty about asking for help. So, how can you support a caregiver? The first thing is check in on them. Too many times, and I know I am super guilty of this one. I'll ask the caregiver first thing, how's the patient doing? Right? I'll check in on the patient. I need to check in on the caregiver. I need to ask them, how are you doing? I need to make sure I talk to them. We also need to give our caregivers permission for self-care. I remember distinctly the fear that I had when Rexana moved in. You want to be so strong for that patient. You want to be there for them no matter what. And you don't want to let them know how scared you are. You know, I was panicked. I'll I'll just tell you, I was panicked. I thought, oh my word, she's gonna die right here in the bed beside me. And, you know, all these anxieties run through your mind, and you want to be prepared for it, but you don't want to share that, and it's a lot, it's so much going on. So, you guys, we need to support our caregivers. We need to help them navigate this journey. The decisions are so hard, it's just so much. So, we need to make sure we're checking on them. Maybe we can encourage them to take a walk, um, lunch out with friends, exercise, sleep, counseling, anything that we can do, and remind them that the self-care is not selfish, you guys. It's about survival. Um, offer respite for your caregiver friends. Some of the examples could just a few hours can be totally transformative. Um, sit with the patient. I had amazing people that would come in and stay a day or so with Rex Anna so I could leave and I could go somewhere with my family. You know, someone that runs errands for you. Like I said, today it's so easy to place the orders for groceries and pick them up, prepare the meals, anything, helping with children. It all means so much. You guys, there's also situations where the caregiver doesn't want to leave the patient. Okay, that's perfectly fine. Don't force that. You know, they want to be right there in that moment. But you guys, sometimes they really appreciate you just coming to sit with them, bring a deck of cards, watch TV, or sit in silence. Maybe that's what they want, but they just know somebody's there. Again, in my journey with Rex Anna, we were so blessed with so many people that would come and visit us. They sat with us, they made us laugh, they told stories. It was so wonderful getting to have people come and visit. It truly made a difference. So that wraps up number three, you guys. You know, understanding our caregivers really need our support. They matter. Their support is immeasurable, and we need to check in on them too. Every single podcast I leave with an action item. Today's focus on doing something to address the need of a patient or a caregiver. Everyone can be a hope giver. A friend of mine calls it a hope dealer. Take the time this week to do one thing to address the need of a patient or a caregiver. And maybe what they need is you just asking the question of what the conversations look like. But it could be a visit, it could be a phone call, it could be running an errand, maybe it's taking them out to dinner, movie, shopping, whatever. But small acts matter too. Patients remember cards, they remember the text messages, they remember the little notes, the care packages, any prayers, the encouraging words. Think of the patients that you are supporting. What would be the best way for you to be a hope giver? Then align your authentic personality to that and then deliver that one action. It's not about making a grand gesture, you guys. It's about letting them know that you're in the journey and they're absolutely not alone. At Rexana's Foundation, one of the most meaningful things that we do that I'm so proud of for our team is we have the Pat Hood Rally Cards. The Pat Hood Rally Cards is an initiative that we started years ago. And right now we have over 150 volunteers who write cards to patients. How it works is every patient or caregiver who wants to receive cards is aligned with a buddy, uh, it's an adoption, whatever you want to call it, but they're aligned with a volunteer, and that volunteer agrees to send them an old school snail mail card once a week. It's just our way of supporting, loving, and encouraging patients through their journey. And it's also our act of service to show love to the patient. What's pretty amazing is these people are aligned and they're connected and they don't know one another. And the result has been tremendous because people are blown away that a complete stranger would care enough to check in on them and send them a card once a month. You guys, why? Because for us, hope can arrive in that envelope. Hope can be that encouraging word. A simple card can remind someone that a complete stranger cares for them, is thinking of them, and is in the journey with them so they're not alone. And to let them know they truly matter. These cards only take a few minutes to write, but their impact can last for days for our patients. I have patients that have been receiving cards for years from our volunteers because, again, the exciting news is patients are living much longer. We have patients that they're our volunteers, our rally card writers, have been writing to for eight, nine years, a card a week. And the patients will send me pictures where they have whole baskets behind beside their chair or in their home. It's so cool. The cards are so meaningful. They they save them. You guys, if you know a patient or a caregiver that you would like to see receive these rally cards, or you are the patient, you can register for this. We have registration on our website at www.rexanafoundation.org. You guys sign up, sign one up. We would love to have a patient that we can encourage in this journey. So your action item for the week is to be that hope giver. Hope for the patients. All right. Hope for the patient comes from so many forms. It comes from research. It comes from a test result that is really good nose. It comes with a day with no appointments. It comes from a day that maybe is full of laughter at the park. Sometimes hope comes in the form of just a normal day with your family. So let's take the time to find a little bit of hope and just pass it forward to the lives of our patients and caregivers this week. Thank you so much for joining me for this episode of Hope Forward, where we focus on ways we can support patients and our caregivers. If you know someone that's walking through cancer right now, a patient, a spouse, a family member, a caregiver, or a friend, share this episode with them. Share it with your family and friends because we all want to be the best support we possibly can be for any of our friends and family that are battling cancer. And we want everybody to know that they're not alone in this journey. At our website, RexanaFoundation.org, there's a place you can leave comments, give us information, let us know what small act of kindness or encouragement that you lean into this week. Also on the YouTube channel, you can share with us what you want to do as an act of kindness and a way of supporting our patients with what they need. You guys, we're really trying to create a community with this podcast. My goal for this podcast is everyone that's walking through cancer and anyone that's supporting someone battling cancer to have the clarity, the information, the education, and the support that they need, and absolutely the encouragement to navigate this journey, to make the tough decisions, and to really find moments of joy. So until next time, you guys lean in, have that conversation, ask the question, address a need for a patient and a caregiver. Because when we all do that, we all move hope forward.