Mesothelioma Support That Actually Helps

A mesothelioma diagnosis doesn’t just change a treatment plan, it rearranges an entire family’s life. We talk with seasoned members of a mesothelioma care team about the moments that hit hardest right after diagnosis and the quiet, practical choices that help patients and caregivers keep going when everything feels urgent.

We dig into the real-world stressors families face beyond medical care: travel to a specialist, time away from work, bills that don’t pause, and the emotional whiplash of learning the cancer is often tied to asbestos exposure. When that exposure is occupational or even secondhand from a loved one’s work clothes, the grief can come with anger and a deep sense of betrayal. We also share what support can look like when it’s done well, from caregiver groups to daily check-ins that make people feel seen.

You’ll hear a simple idea that carries a lot of power: head and heart have to work together. When mood drops, it’s harder to eat, walk, recover, and stay engaged with care, so emotional support becomes part of the treatment path. We close with grounded advice for the first weeks, like limiting panic scrolling, bringing someone to appointments, taking notes, asking direct questions, and seeking a mesothelioma center of excellence when possible.

If this conversation helps, subscribe, share it with someone who needs support, and leave a review so more families facing mesothelioma can find us.

MESO: The Mesothelioma Podcast is sponsored by Danziger & De Llano, a nationwide mesothelioma law firm with over 30 years of experience and nearly $2 billion recovered for asbestos victims. For a free consultation, visit Dandell.com.

Transcript

Welcome And Introductions

SPEAKER_00 0:01

You're listening to Miso, the Misothelioma podcast, where support, education, and outreach come together for families facing misothelioma.

SPEAKER_05 0:15

Hi, good good afternoon. Um, my name is Anna Jackson, and we're here with Lisa Barrett. Ellie, and you're gonna have to um uh I and I apologize, I forgot your name.

SPEAKER_03 0:26

Charlene, how will you?

SPEAKER_05 0:28

Darlene, and they've been Charlene.

SPEAKER_03 0:31

Charlene with the C.

SPEAKER_05 0:32

Charlene. I'm sorry. Okay. Charlene, thank you so much. Lisa and Ellie, I thank you so much for being here uh today. It's it's so amazing to uh speak with you guys about uh mesothelioma. I know that uh all three of you have worked in that industry uh for for a number of years, am I correct? Um yeah. And so, you know, Charlene, we're kind of focusing on you a little bit. We we Lisa and Ellie, uh we've had them on um before. Um, I I know that one of the questions was what drew you to specialize um all those years with mesothelioma patients?

SPEAKER_04 1:13

Well, I think it's really the patients themselves. They're really um they're really tough. They're really pretty amazing. Um, they have a lot of hope and they have a lot of resilience. And it was really incredible to work with them. Um, given the circumstances, the diagnosis, they never give up. They're really tough and they're just really amazing people to work with, salt-of-the-art people that really appreciate everything you do. They're really easy to work with.

SPEAKER_05 1:38

I totally agree with you. I mean, I'm not in the same role that you are. We actually uh talked to them when they're first diagnosed, and uh I I don't think that I've had anyone uh that I spoke to um that weren't just, you know, great individuals, you know, their concerns are really great, which, you know, I mean, knowing the diagnosis, you'll understand that the concerns are there about

Why Mesothelioma Patients Inspire Clinicians

SPEAKER_05 2:02

that. Um, the social worker role is an important one for the mesothelioma patients and families. What made that role more intense and personal to you?

SPEAKER_04 2:13

Well, I think it's very intense because I saw the patients and their families every single day. I would visit them um on the floor if they were in the ICU or in the floor, wherever they may be. So I'd visit the patient every day. I'd see the families every day. I ran groups for both patients and families. So the relationship became very intense.

SPEAKER_02 2:32

Yeah.

SPEAKER_04 2:32

I really got to know them, their families, their hopes, their dreams, what they needed, what they didn't, um, their financial situations. It was very intense, but it was really fulfilling because they let you in and they needed me. They needed a social worker.

SPEAKER_02 2:45

Right.

SPEAKER_05 2:46

It I mean, Lisa and Ellie, you feel the same way. Because I know you guys have worked in it in quite a number of years as well. I mean, it was the relationships you guys had with these patients and their families. I mean, most of the families that come into this, I mean, they have absolutely no idea what to do. And so they're looking to you, the three of you, to to kind of give them an idea or or to guide them in what the next step is. Um, you know, I know that the choices are theirs, but you know, having someone that knows as much as you guys do about mesothelioma is just, you know, a godsend, you know, um, really, really um appreciate the things that you guys do. And and when we talk to the clients, once they have met with you guys, I mean, they have nothing but great things to say with, you know, the work that you guys do. Um, so can you describe your role as a social worker working with uh mesothelioma patients and their families? I asked that question, I apologize for asking it again. Um, what is the biggest emotional and practical challenges patients face after receiving a mesothelioma diagnosis?

The Money Travel And Caregiving Reality

SPEAKER_04 3:59

Well, practically, and the practicality side of it, it's really the financial piece. It's really hard to be far away from home, you know, having to settle into a new city, having to stay there, having to pay for stuff. And, you know, I used to say to them, you know, life goes on, it doesn't stop. Bills still need to get paid, life goes on, all of that. So I would say to them, if you had to make some sacrifices, I would say, when your loved one is in the hospital, being taken care of by these amazing nurses and doctors and so forth, stay home if you need to work. Then when your loved one is out of the hospital and need to recover, you know, wherever it may be, then come if you can. Um and, you know, try to get some extended family members to help you out. But it's really hard. Practically, it's really, really hard, but it's it's doable. We through that and we get them through that in terms of what they need to do.

SPEAKER_05 4:50

You know, I I think I think being a caregiver, whether it's a spouse or a family member that's taking care of an individual, um, you want to be the one there all the time. I don't know if if if you know uh your experiences with the family members, but I know um that you're always concerned that, you know, if I'm not there, you know, I'm not gonna be able to make any decisions. And um what I like to tell people is what you said was you don't have to be here all the time. And I think Lisa had mentioned something about that um in uh a podcast we talked about before, where um, you know, take your take your time and and and go, you you're better, you're a better caregiver if you take the time to take care of yourself as well. Um and um it it's really hard. I I know it was hard for me to lead the hospital when my husband was going through cancer, um, but that you really, you know, need to know that um that the patient is going to be taken care of. Um and especially when you have, you know, nurses and social workers like you guys um that really care for the patients. They're gonna be taken care of. Um there's, you know, it's it's what you do and what you love to do, and and these people are are important to you. Um so um, and and I was fortunate enough, it's made Lisa made it a little easy. She gave me a couple of questions uh to ask. And I'm so appreciative, believe me. Sometimes you try to remember, you know, try to think of questions. And I um, and I think that's why I'm I'm reading some of these um uh twice.

When Asbestos Exposure Feels Like Betrayal

SPEAKER_05 6:38

So mesothelioma is often linked to occupational asbestos exposure. How does that unique aspect of disease affect patients and family emotionally?

SPEAKER_04 6:50

Is that to me? Do you want me to answer that question? Yeah, sure. Um I think I think they're devastated. I think they don't know what to think. You know, we've had um we've had patients that have talked to us about, you know, their dad came home, the asbestos was on their jacket, they put the jacket on, they got exposed. I just don't think they know what to think.

SPEAKER_05 7:09

They're just really devastated and angry that this had gone on and nobody You know, I think it's sometimes some of the things that that you know they say is they've worked for a company for so long and they devoted their life to that company. And the hardest thing is for them is to think, how could a company company like this, someone that you devoted your life to, not tell you that the the type of work they were doing or the products that they were using at that company uh was carcinogenic, right? Um so this they're disappointed. They're disappointed in the company, you know, they had a an a great relationship with their boss. Um, and then here they are years later having to deal with um with a diagnosis that that is very aggressive. And, you know, the uh chances are um, and as much as I hate saying that, chances are they're not gonna survive it, depending on, you know, where you know where they are in their diagnosis as far as staging. I and I know staging is hard with mesothelioma and it's different. Is that correct? Am I correct with that? But the staging is okay. Um, so yeah, it's it's a huge disappointment to these people. Um now, would they have done something different if they knew? Um, because a lot of people just needed a job. And, you know, what they needed to do was, you know, get their families through that period of time, right? Um, so it's a little a little scary um that you know that some things like that happen and still

Mortality Talks And Team Trust

SPEAKER_05 8:46

do. Um so what are some of the most difficult conversations you have with patients and their loved ones? If anyone wants to answer that.

SPEAKER_06 8:57

Um I think from as a nurse, taking care of somebody at the bedside, which was, you know, a while ago, but I think it really is for me, it's probably like talking about their mortality. You know, are they gonna make it? What does it look like? You know, and trying to keep them in the present, right? Because nobody really knows what tomorrow is gonna bring. Right. But again, I think that uh you know, it's it's a tough illness. So I think for me as a nurse, I think it probably was someone's mortality was a very difficult decision.

SPEAKER_02 9:28

Yeah.

SPEAKER_05 9:29

Do you do you say the same, Ellie?

SPEAKER_01 9:35

Yeah, I think it's kind of keeping their head in the game. You know, like, you know, keeping uh you know, being realistic, but also you have to be honest, you know, and just you know, having them express what they see, you know. Uh and I think that's what, you know, you know, working together as a team is like just so important. And that's why like Charlene was just unbelievable, you know, because she had the trust of the of the patients and their families. You know, not that we didn't, but she had it in a different perspective. She, you know, she could follow, you know, what that, you know, what that person meant to the family, where they fit in, you know, what how much the family was sacrificing and how much the patient was sacrificing just even to be there. So, you know, it there's a lot of difficult conversations that hell are held, but they're they're held over a period of time, you know. And that's like, you know, Charlene was saying she had groups, and I I don't think you can underestimate the importance of having, you know, having the caregivers have a safe to talk, you know, without, you know, what, you know, trying to put on a brave front.

SPEAKER_05 10:53

Right.

Head And Heart Must Work Together

SPEAKER_05 10:55

Yeah, Charlene, you mentioned something about, um, I don't know if it was on a a podcast or or maybe just when we were talking to you before, you mentioned something about head and heart, right? So um can you can you kind of tell us what that means?

SPEAKER_04 11:10

Sure. I think I always told people that they the head and the heart really need to work together. Because if if if you're not emotionally ready to do this, and you're not gonna be able to do what the doctors and the nurses and the teams ask you to do, right? You need to walk, you need to eat, you need to do your physical therapy or whatever it may be. So your head really needs to be in it, your heart really needs to be in it, you need to work together. And that's a really, really important piece. For example, if your mood is really low, you're not gonna be able to get up, you're not gonna eat, if you're starting to give up, those that that mood piece is really, really important for people. So I think it's really important to try to check in with folks, you know, every day. How are you doing? How are you feeling? Where are things at for you? Both the family and the patient.

SPEAKER_05 11:55

Yeah, yeah. No, so true. Um, so many patients are overwhelmed by medical appointments, financial concerns, and legal questions. How do you help them manage these um uh competing uh stressors?

SPEAKER_04 12:11

Well, that's a hard one. Um, but yes, it is really tough. Um because we don't, you know, everything has to continue to go on, even if the patient is in the hospital. You know, at home, their bills have to get paid and all that kind of stuff. So, you know, we whatever resources the hospital has, I think everyone's every hospital is probably different, but whatever resources that we have in terms of like hotel stays, discounts, the miso house that that we had, um, that kind of stuff is really helpful, you know. Um, talking with lawyers and seeing where things can go for them. Um all those things are very, very important for people. And and leaning on your family is really key. If if you can, and if you have family.

SPEAKER_05 12:49

Yeah, not always the case. Right, right, right. It it it takes a village, right? It takes a village. Um what misconception do people have about mesothelioma patients' needs beyond medical treatment?

SPEAKER_04 13:05

Misconceptions like what they don't need. Um maybe people think that they don't need a lot when they actually really do need a lot of care and support.

SPEAKER_05 13:18

Well, I mean, even after, even after treatment, um, even after treatment, there's still so much that they have to go through. I mean, uh what I'm hearing, and and and you guys correct me, what I'm hearing is that a lot of what they're doing now is managing mesothelioma. Am I correct with that? That it's more of um they're not they're not um actually uh the surgeries are not uh as big as they used to be, and it's more of managing uh mesothelioma, um uh the cancer. Um, is that what you're hearing or no?

SPEAKER_06 13:53

I think that maybe they're not doing like um removing the lung like they used to, because I think that's rare if someone does that. I don't know anyone who's doing that currently. And I think that oftentimes there's other treatment paths besides surgery, but I think you know it it really depends from patient to patient on what they're doing. I think so, and but whatever treatment you have, you're faced with a different set of problems, right? Nothing it it's a difficult uh disease, it's a difficult treatment process. I think the big thing is is that you you could do it alone, but it really is much more successful if you do it with people.

SPEAKER_02 14:33

Yeah, yeah.

SPEAKER_01 14:34

Um go ahead. And actually them having something to manage. Something the you know, the initial goal is to make it a chronic care, a chronic illness, so that you do so that you know patients are surviving and thriving longer with the disease. So that's you know, and you know, that's really uh a key point for, you know, because as of yet they don't have a cure, but if they can, you know, patients survive longer and live a good quality of life, then you can kind of point to that as worth going, you know, going through all of this.

SPEAKER_05 15:14

Right, right.

Resilience Stories And Finding A Focus

SPEAKER_05 15:16

Um are there um, Charlene, it can you share a story or an example uh without, you know, like you know, while protecting the patient's privacy that l illustrates the resilience you've seen in mesothelioma patients or caregivers?

SPEAKER_04 15:34

Yeah, I mean, the one there's one that comes to mind certainly. We had a young woman who came to our mesothelioma orientation and she had just had a baby, and she was young, and she was exposed by her dad. Um, and so she fought really, really, really hard. Her resilience was amazing. It was not easy at all. I remember seeing her in the ICU. Her family came, her husband came. We did a lot of crying. It was really hard. But in the end, you know, a tough road, lots of bumps, but in the end, she kept going because there was a reason for her to keep going. She had that baby and she needed to keep going, and she was amazing and strong. So the resilience was incredible. And I think every one of the patients I've I've met has some reason. Someone wants to walk someone down the aisle, someone wants to go to someone's wedding, someone wants to do, you know, there was a farmer we had. He wanted to go back to his farm.

SPEAKER_02 16:31

Right.

SPEAKER_04 16:32

Everybody had something they were holding on to, and I think that really got them through.

SPEAKER_05 16:37

Yeah. That's that's that's pretty important to that, you know. I mean, you're saying that, and you know, I'm thinking about that. Anytime you have a focus, something that you can focus on that can take you away from, okay, there's going to be a lot of pain here. There's, you know, I'm going to go through a a lot, but but here's my focus. You know, I I want to raise my own child. I don't want someone else raising my child. Um, I I want, you know, to walk my daughter down the aisle or whatever it may be, um, whatever the focus is. It's funny, I was reading something the other day, and one of the things they ask um was, what is your focus? What what what why are you doing it? What's your goal? And um, you know, is it that you're going on vacation in a couple of months, or is it um, you know, is there a uh a reunion that you're looking forward to or something? So it's kind of the same sort of concept, you know, find that that that focus that can get you through. And um yeah, that's that's that's true. I never I didn't think about that, but it is true.

Early Weeks Advice And Specialist Care

SPEAKER_05 17:42

Um for some newly diagnosed with mesothelioma, what advice would you give them and their family during those few weeks?

SPEAKER_04 17:52

Not to panic, even though people are going to try to stay off the internet if you can, because that's the hardest. Yeah. We all do that. I mean, that's where things are, but you know, you try to let them try to tell them that. Um, you know, get keep going. Don't be assertive with your doctors, be assertive with your team, make sure you're getting your appointments, don't let things slide. Um, you know, time is important, right? You get the diagnosis, and time is very important. So you want to make sure that you're following up, the doctors are following up, um, taking notes anytime you go into a meeting with anybody, see if somebody else can be there and take notes for you. There's so much information, and you as a patient are you can't hear it. And sometimes the loved one can't, loved ones can't hear it either. So I would often sit in those consoles and I would take notes and I would give them to people because it's really so it's scary and it's hard and it's emotional. And when you're emotional, you don't hear anything.

SPEAKER_05 18:47

Yeah, yeah. I I I think about that. I I don't know if you guys watch Charlie Brown and the T anytime adults would talk, it was always that wah wah wah wah wah. And um when I think about that, I always tell people, um, yeah, you know, if if you can have a family member there with you, because one will remember something and the other one didn't. And um that way you would have all the information you needed. Um, and you know, it's it's as difficult as it is, if you know, the word cancer is is something that that you know a lot of people hate and are afraid of. Um and, you know, as as time goes on, and it's been somewhat of a a slow process of of you know finding new treatments for mesothelioma. It took many years before the last treatment or the immunotherapies came in or whatever it may be. Um, but I always tell um individuals that they they need to be able to manage their their health. I mean, they need to ask the question, not be afraid to ask the question. And they should be, you know, especially uh to you, Charlene, and the nurses. Um maybe, you know, Charlene, you're probably the one that they're able to talk to a little bit more about that, you know. Um, you know, I'm feeling a lot of pain. What can we do for it? I I think they need to not be afraid to ask the question because we get them, and I'm, you know, I I can't do anything. I just, you know, tell them you have to ask the question. Don't be afraid to do that. Um, they're all struggling quite a bit. Um, and you know, no one wants to be in this place. Um, and but it happens, unfortunately. Lisa, do you have something you'd like to, you know, any questions you might think we should be asking?

SPEAKER_06 20:34

Or is there anything else that, you know, that you guys want to share um about, you know, your, you know, what you do and and uh I think we were, you know, as employees, we were spoiled by, you know, the center of excellence that we all worked at, right? Like we had the best of the best. And I think that if you have mesothelioma, you need to get to a specialist. Yes. I I think it's so underrated. I think that um you'll be given opportunities that maybe a smaller place couldn't provide. Right. You know, whatever the reason, it's not that they're bad, it's just that a center of excellence. I mean, everybody has their field of expertise. So I think if you can get to a center of excellence, that's what you should do. And again, I think that you know, it is costly, but there there's resources out there.

SPEAKER_05 21:26

Yeah, yeah. No, I I totally agree with looking for the right mesothelioma uh, you know, uh facility uh physician that knows how to treat this. It's not the it's it took years, years before they realized, you know, what this cancer was. And it took years to get the, you know, um any changes uh for treatments. Um you want someone that has the background um that has worked with individuals. Um, you know, sometimes it's hard to uh, you know, usually we'll ask the question, um, do you have someone that special, you know, who are you going to as far as their medical? Um a lot of times we don't have the choice to send, you know, uh refer someone. Sometimes we do. And when we do, we we try to send them to someone that knows what they're doing. And um ladies, thank you so much. I so appreciate everything you guys do. Um, you know, I I know I know that these families that have worked with you um, you know, are so grateful um to have you guys there. Um you don't get that always. You don't get the personal uh touch from uh all nurses or uh social workers. And I so appreciate, you know, the the work that you've done and the work that you're going to do. Um so I thank you for for being here with us today. And um uh Charlene, did you have anything else you'd like to share with with anyone?

SPEAKER_04 23:02

No, I I don't I don't think so. I just think patients and the families are pretty amazing and I felt need to work with them.

SPEAKER_05 23:08

Yeah. And and you know, they're they're gonna feel that way because they know your personality fits them, right? And uh so thank you. Ladies, thank you so much. I appreciate you guys. And listen, you guys have a great day. Take care. We'll talk again soon, okay? Thank you. Thank you. All right, bye-bye. Thanks.

SPEAKER_01 23:29

Bye.

Closing Thanks And Resources

SPEAKER_00 23:32

Thank you for listening to Miso, the Miso Thelioma podcast. For more information, resources, and support, visit our sponsors, Danziger and Dayano, at dandel.com.