Cancer Clear and Simple
Welcome to 'Cancer Clear and Simple,' the podcast dedicated to simplifying cancer. Join us as we discuss the world of cancer, breaking down complex concepts for our listening audience. One of our goals is to equip individuals and families dealing with cancer by providing clear, and concise insights. Through personal stories, expert interviews and practical tips, listeners are enabled to make informed decisions. Whether you're a patient, caregiver, or just simply wanting information, tune in to 'Cancer Clear and Simple' for a easy-to-follow guide on understanding and coping with cancer.
Cancer Clear and Simple
Kelsey Swenson, FNP – UW Health | Why Support Matters in Cancer Caregiving
Caregiving doesn’t pause for work shifts, school pickup, or broken cars—and it definitely doesn’t pause for a two-hour drive to chemo. We sit down with Kelsey Swenson, a pediatric nurse practitioner in hematology and oncology, to talk candidly about the human side of cancer care: the relief of remission, the weight of dual roles, and the countless micro-decisions that shape a family’s survival plan.
Kelsey traces how family cancers first drew her to oncology and how stepping from clinician to daughter changed the way she listens, explains, and grieves. From pediatric leukemia to the ripple effects of genetic risk, she breaks down when screenings matter, why starting colon checks earlier can save lives, and how low-dose CT scans are shifting the landscape for eligible long-term smokers. Her insights come with a rare blend of clinical precision and lived empathy.
We also dig into the logistics most shows skip. What happens when a single parent can’t get to clinic because the gas card is for a station 40 miles away? How do rural families plan for a safe discharge when home health is scarce and the nearest hospital can’t handle oncology complications? Kelsey spotlights the unsung backbone of social work—groceries, gas, diapers, emergency rides—and the reality that funds sometimes run out. The takeaway is practical and hopeful: build a support network before crisis hits, ask for social work early, and map your local resources like your care depends on it, because it often does.
If this conversation helps you or someone you love, share it with a caregiver, subscribe for more grounded cancer guidance, and leave a review so others can find the show. Your feedback fuels the next story—and might be the sign someone needs to ask for help today.
On today's episode of Cancer Clear and Simple, I think it's really important for patients, whether it's pediatric and it's the parent or you're an adult patient, to have some sort of support group, whether that be your neighbor or your church or like just a little community group or just a friend if you don't have family because going through cancer treatment is so hard. So if you're the caregiver, make sure you have support. Make sure there's someone you can go to, even if you just need to, I just need a 10-minute breather. Can someone please help take care of, you know, my son, daughter, or your mom or dad? Um, because having support is vital when you're getting cancer treatment and no one can do it alone.
SPEAKER_00:Welcome to another episode of Cancer Clear and Simple here at the UW Carbone Cancer Center 23rd annual fall cancer conference. This year's theme is cancer caregiving, complexities, challenges, and choices. I am here joined by a colleague, Kelsey Swenson. Kelsey, would you like to introduce yourself, please?
SPEAKER_02:Yeah, so as you said, my name is Kelsey Sweatson. Um, I am actually a family nurse practitioner who works in pediatrics at the American Family Children's Hospital. Um, I work in pediatric hematology, which is leukemia, lymphomas, blood cancers, oncology, so solid tumors, bone marrow transplant, and I do some sickle cell.
SPEAKER_00:Right. Um, and so can you tell me a little bit about how you got into that role?
SPEAKER_02:Yeah, so um I was actually a floor nurse on the adult cancer unit that did hematology, oncology, bone marrow transplant, and palliative care for about seven and a half years. And then when I graduated school, I had the opportunity to interview with pediatrics and found myself in a very similar role, just with more responsibilities for PEDS. And I originally went into nursing because of family history.
SPEAKER_00:Okay. Um do you mind telling us a little bit more about that family history and what kinds of cancer you may have dealt with?
SPEAKER_02:Yeah, so my mom's dad actually passed away when she was 12 from Hodgkin's lymphoma. Um, and my dad, his dad, was diagnosed with colon cancer when I was in high school, which, you know, cancer impacting a high schooler sometimes that doesn't always mean anything, but I wanted to make sure that he had better care um and that I could give patients better care than what he had received, especially being in a rural area. So I went into nursing to hopefully give patients great care in a cancer setting. Went to school in Milwaukee and then found myself in Madison.
SPEAKER_00:Okay. Well, thank you for your commitment to wanting to do the caretaking part in that type of way. Can you, I guess, talk a little bit about your perspective of care taking and caregiving with the experiences that you've had in your family?
SPEAKER_02:Yeah. Uh so you know, my grandpa's cancer in high school actually ended up coming back last year when it came back, it was stage four. So he did have more of a terminal diagnosis. And I think being a granddaughter in the medical field, or any, you know, person for that matter, you almost feel a sense of responsibility to take care of the people in your family when you have the medical background in the knowledge that you do. So I did a lot of stuff with my grandpa, like talking about eating and what he should be doing during the day, and you know, stubborn 78-year-old man trying to get him to listen to his granddaughter. But yeah, I think feeling a sense of responsibility, especially last year my dad was diagnosed with cancer, and it was just my husband and my kids here, and then I have a younger brother, and my sister lives in Milwaukee, so we don't have any other family here. And working in an area where I knew my dad would be receiving treatment, I felt like a really big responsibility to make sure that I was going to his appointments, that I knew what was happening in his my chart, what medications he was on, like trying to make sure that like he was gonna be okay and like I knew what to expect with treatment, but he didn't.
SPEAKER_00:Okay.
SPEAKER_02:And also trying to make sure that I grieved that my dad was sick, and trying to take a step back from the provider role and also let like my parents ask questions too, because you don't ever want to be the Debbie Downer and like, oh, I know what's gonna happen. But I'm happy to say my dad is in remission.
SPEAKER_01:Okay.
SPEAKER_02:He received treatment at Carbone Cancer Center, he did radiation and chemotherapy. And but yeah, it was a lot for him to get through, and I think it was a a lot for our family and being on the other side of the patient, like you're not a provider, you're you're a patient's family at this point. It really put things into perspective for me as a provider to have more compassion for like my patients and their families.
SPEAKER_00:Yeah, I'm just hearing the the difficulty of trying to disentangle the multiple roles. Can you just go into a little bit more of the diff the challenge of having to know from a medical perspective? Because I was wanting to ask, like, what are screening conversations like in your family with all this prevalence?
SPEAKER_02:So um he is actually my stepdad, so I don't have to have any genetic testing done for that, but it would be something more to look into for maybe my siblings who do have that because our grandma was also diagnosed with metastatic lung cancer recently. Um and we come from an area where PFOs were prevalent, so unknown exposure there. And there's quite a few people in the area that we grew up in who actually have cancer diagnoses as well. So I think in learning in pediatrics, you know, we do lots of genetic testing to see if there's any genetic link because sometimes there's patients that the kids, the siblings, and the parents all have cancer, or they all have this genetic mutation that makes them more at risk for getting a cancer diagnosis. Um, so it could be something to consider for family.
SPEAKER_00:Okay.
SPEAKER_02:Getting that genetic resource.
SPEAKER_00:Okay. Okay. And then in terms of my work as far as an outreach coordinator, I get to have conversations around the recommended age for screening for certain cancers. So when you're talking about lung cancer, when you're talking about colon cancer, I'm more in the community talking about how these are mostly age-related conditions. Can you talk a little bit about how that's different coming from the pediatric space and how you end up having to have conversations about regular cancer screenings with people?
SPEAKER_02:Yeah, so in pediatrics, colon cancer and lung cancer are not prevalent diagnoses. One of the most common diagnoses I see in the work that I do is actually acute lymphoblastic leukemia. But when we're thinking about, you know, if there's a genetic component, so maybe their parent had colon cancer. Um, and the recommended screening is that you start getting tested 10 years at the age your parents were diagnosed. So if your parent was diagnosed at age 40, you should have a colonoscopy at age 30. Lung cancer, screening is a little different now, and I don't know a ton about it, but people who were smoking long term actually do have the opportunity to do low dose CT scans. Um, whether they stopped smoking 10 years ago and they smoked two packs a day, or they are still smoking, that is an option now to do low dose CT scans, which helps decrease the risk of lung cancer and increases the prevalence of finding it before it's metastatic.
SPEAKER_00:Yeah. Okay, okay. So yeah, just wrapping my mind around the spectrum of where we have to have these conversations, when we have to have these conversations. And so just in terms of what's something that you feel might not get attention when it comes to understanding the caregivers' role.
SPEAKER_02:I think we forget that they still have jobs and other kids they might have to attend to, especially in pediatrics. Like you see some patients, like they might have three or four other kids at home and their one child is getting treatment for leukemia, and they have jobs to keep, they have other kids to take care of, they're trying to coordinate, going to school with the other kids, like making sure their homes are clean, making sure they're getting food on the table, like making sure they're not getting fired from their job. And honestly, some of these parents are single parents too, and I applaud them because they do so much hard work, especially, you know, if their kids have to go for an inpatient stay. And um, I think we forget that they also have a lot on their plate that we might not be seeing.
SPEAKER_00:So I wanted to just follow up on that point around the the pressures of possibly single parents having to support a child through a cancer treatment situation. Is there is there anything or an example that you can give that you know might um just give a little bit more of a an understanding to that type of difficulty?
SPEAKER_02:Yeah, so I do have some patients um where single parent, single mom, maybe your son or daughter has leukemia, they live an hour or two away, so they don't live close, um, trying to hold a job down, make sure that you know leukemia treatment is about two and a half years. And the first couple cycles of chemo are really hard. So they're impatient when they get a diagnosis normally. And so, how do you explain to your job, like, hey, I'm gonna need to be off a lot? Like, I'm the only person taking care of my son right now who has leukemia. I don't have family, our appointments are almost two hours away. So we actually have a really great social work team that works with our families to like help provide resources for like groceries and gas reimbursement. And maybe there's some foundations that can help pay some of the bills. But then, you know, things happen and maybe they don't show up to their appointments or they keep canceling them and we're like, hey, we really need to get your child their chemo, and we're worried about getting chemo, but mom might be worried about keeping the lights on and her car just broke down and now she can't get there. And transportation is a huge issue sometimes for some of our patients, and it's really unfortunate because at the end of the day, we all just want what what's best for the patient to make sure that they're getting their treatment so that we don't have disease progression either.
SPEAKER_01:Yeah.
SPEAKER_02:Um, and so I think just being really empathetic and compassionate towards families about like, we know you have a lot going on. And so we try and work a lot with like making sure their appointments work for them, like helping them with transportation, um, really looping social work in.
SPEAKER_00:Okay. Okay. Um, and I'm liking hearing about the behind the scenes work, the team dynamics, how you're working with um the social work team and things like that. Can you talk a little bit more about the collaborations that you have in your role about advocating for patients?
SPEAKER_02:Yeah. Um, so almost every visit I will ask my patient if they would like to speak with social work. Because sometimes they haven't met with social work yet, or they felt like they didn't need social work, but they're asking me for things that maybe I don't have access to or I don't have knowledge of, even such as like diapers. Like you're having trouble getting diapers, like there's foundations for that that can help get diapers for people, which I had no idea about until a couple of weeks ago, which is great. So but yeah, I think always just making patients aware that social work is there to support them too in different ways that the providers don't always have access to. And they have lots of resources for family. So if anyone is going through treatment, I would recommend that they always reach out to their social work or have their provider reach out to them because they are our little backbone that help us with everything that the patient may need.
SPEAKER_00:Right. And so you're um I'm starting to pull together the pieces from what you're saying around some of the barriers and obstacles and the social work arm of the care team is there to kind of fill in for those types of uh requests and needs. Has there ever been a situation where social work wasn't able to fill in the gap?
SPEAKER_02:Sometimes, um, especially if there's lack of funds.
SPEAKER_00:Okay.
SPEAKER_02:So it's hard when people live further away to get transportation. And we may not have funds for them to get grocery cards yet. And if we don't if we run out of grocery cards, like we unfortunately don't have any grocery cards for them. So trying to find people like maybe there's a good food bank by them that we can look up for them and see if they can go there and get some groceries, seeing if there's any friends or families that like maybe the gas cards that we do have work at this gas station because we've run into that issue before where we've given gas cards and it's way out of their way, and then they're like an hour late for their appointment because they had to go to a gas station that wasn't actually by them. So trying to find people that maybe can help with rides and then we can give them gas cards where they can actually go. So, but yeah, we do have a little bit of lapse and care sometimes there.
SPEAKER_00:Okay. And just you have a very unique understanding of the rural context. Can you help if somebody was just coming into the caretaking space, the caregiving space for somebody in that rural context? What are some of the things that you would tell them to help set them up for success?
SPEAKER_02:Yeah, I think um, especially if you're driving to like a larger area to get care and then going back home, making sure you know in your area what is available for you when you have to go back to your rural area. Um, and if it's not available, where can you get it from before you go home? So, like, even things in the house, like, do you need toilet seats? Do you need walkers for people? Is there maybe a home health agency that can come in and help you? Where is your local hospital? Like, what does the care there look like? Like, are you gonna be able to go there if something is wrong? Or like, are you gonna have to travel two hours away to get if there's an emergency? And I think being really aware of what is around you before you go home is really important for people.
SPEAKER_00:Okay, okay. Um I'm thinking about leaving for vacation and that situation where you gotta double check the list.
SPEAKER_01:Yeah.
SPEAKER_00:To make sure, yeah, okay. Um thank you for laying that out because that's how my mind works. And I appreciate being able to follow you in that type of journey. And I just want to um give you the opportunity as well. Like, who would you like to kind of talk, recognize or talk about in your in your family in terms of this process of you becoming a professional in this? And it was is there anybody like you like to give a shout out to, a nod to, a hello to?
SPEAKER_02:Yeah, um, my husband's been super great. We've been together since high school. So he's been there through it all, and of course, my mom and dad have also been super great. Um they didn't have the opportunity to go to college, so they made sure that I had the opportunity, and that's been really awesome, and I'm really grateful for them.
SPEAKER_00:Okay. Um, any takeaways from any of the sessions that you've been a part of today, messages that you would want to leave the audience with about caregivers and the challenges, complexities, or choices that they face?
SPEAKER_02:Yeah, there was um a session on support, and so I think it's really important for patients, whether it's pediatric and it's the parent or you're an adult patient, to have some sort of support group, whether that be your neighbor or your church or like just a little community group or just a friend if you don't have family, because going through cancer treatment is so hard. So if you're the caregiver, make sure you have support. Make sure there's someone you can go to, even if you just need to I just need a 10-minute breather. Can someone please help take care of, you know, my son, daughter, or your mom or dad? Um, because having support is vital when you're getting cancer treatment and no one can do it alone.
SPEAKER_00:Kelsey, it has been such a pleasure being able to talk with you on this day and being able to be here with you at the conference. Let's just make sure that we have people join us for the next episode of Cancer Clear and Simple, having folks tune in to find us on whatever streaming platform that they like to go on. And yeah, we're just continuing to have great conversations and we're so glad to have you on with us.
SPEAKER_02:Yeah, thank you. Oh, it's great.
SPEAKER_00:Okay. We'll see you next time. And please join us on another episode of Cancer Clear and Simple.
