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
Ellie │ Hospice at Home: The Road Less Traveled
What happens when a family of healthcare professionals faces cancer within their own ranks? Ellie, a University of Wisconsin-Madison student who works in a hospital laboratory, opens up about her grandmother's battle with a complex blood cancer diagnosis and the profound choices that followed.
The conversation takes us through the deeply personal journey of Ellie's grandmother, who after just one month of chemotherapy made the difficult but conscious decision to prioritize quality of life over extended treatment. "At 80 years old, you just want to be happy and be with your people," Ellie reflects, capturing the essence of a decision many cancer patients ultimately face.
What makes this story unique is the medical expertise that surrounded her grandmother's care. With both Ellie's mother and aunt working as nurses, the family provided direct care without requiring hospice services—a blessing that came with its own emotional complexities. Through this experience, Ellie gained powerful insights about cancer screening, early detection, and the critical importance of supporting caregivers who often put their own grief on hold while caring for loved ones.
Perhaps the most touching moment comes when Ellie describes gently taking her aunt by the shoulders after her grandmother's passing, reminding her that it's okay to both mourn and acknowledge her own efforts: "You can take a breath, you can take a moment." Her message to anyone supporting a family member through cancer resonates clearly: "Make sure you take care of yourself too." If cancer has touched your life as a patient, caregiver, or family member, this conversation offers both validation and valuable perspective.
Open house intro
Hi, my name is Ellie. I'm a student at University of Madison Wisconsin.
Speaker 2:Can you tell us a little bit about today's event and then your exposure or introduction to cancer in your life?
Speaker 1:Yeah, of course I am here for today's event as a volunteer. I ended up here through my Physiology 435 class. Actually, my professor just said in lab they need volunteers for this cancer event and I thought why not? Okay, there's a lot of fun booths around um, especially for kids.
Speaker 2:I made myself a fun bracelet, so can you share a little bit about your bracelet?
Speaker 1:oh yeah, the bracelet. Um, I honestly forgot which each of the beads are for now, but but it's. If you have a widow's peak, yes or no, you get one color. If you have brown eyes, yes or no, detach your lobes.
Speaker 2:Okay, and so those are representing gene traits. Okay, gotcha, gotcha, okay. So thank you, ellie, for joining us on today and just wanting to get a sense of when did you get exposed to cancer in your life as a concept, as a topic, as a condition?
Speaker 1:I was first exposed to cancer in my life when I was quite young, I would say around sixth or seventh grade. I had a neighbor who had cancer and her daughter was one of my good friends, so she ended up spending a lot more time at my house, things like that. But my real immersion into cancer and understanding that is when my grandmother was diagnosed with cancer.
Speaker 2:Okay, okay. How long ago was that, and what kind of cancer did she have?
Speaker 1:She was diagnosed maybe three or four years ago. It always was a little bit cloudy because it was a form of blood cancer, but in addition to that she also had a blood disease, which made the diagnostic process a little bit more difficult.
Speaker 2:Okay, Okay. And then when that happened, do you remember how like that was how you were talked to about that? Who talked to you about that and how did they talk to you about that?
Speaker 1:Mostly my mom talked to me about that. At that point I was already in school most of the year so I would be here in Madison and not living with my mom. So a lot of it was a group chat, family group chat, with everyone in Hearing about the current status of. Sometimes we'd be like, yeah, she has blood cancer. Then maybe we'd hear a couple months later like, oh, they think maybe she doesn't have cancer, maybe it's this disease, and turns out it was both of them.
Speaker 2:Okay, yeah, okay. Do you remember any questions that you had when this came up?
Speaker 1:Yeah, I mostly was wondering what the result was going to be, how much time it was looking like we had, and the unfortunate answer with many cancers is just they didn't really know. She was given three months to three years and it ended up being, I think, something like six months Because she chose to start her chemo treatment but then due to just the co-inflation of her illness just illness, and she had an allergy to one of the medications it just was really really taking a toll on her, okay, and she only went through about a month or two, maybe just a month of chemo and then she was like no, I don't want to live like this okay, okay, um.
Speaker 2:So what I'm hearing is a uh uh about the quality of life.
Speaker 1:Yeah.
Speaker 2:Right, and so you're talking about how the treatments themselves impacted her quality of life to the point where she said, no, this is not the right move, I don't want to do this anymore. Yeah, okay, okay.
Speaker 1:She definitely chose to value her quality of life over quantity, which is something I completely understand, especially being at 80 years old. At that point, you just want to be happy and be with your people.
Speaker 2:Sure, sure. So what did the kind of like the system of support around your grandmother, what did that kind of look like? Do you know about who all was involved in her care or what kinds of doctors?
Speaker 1:Yeah, I'm her care, or what kinds of doctors. Yeah, I'm not sure about what kinds of doctors, but my grandparents are snowbirds. They're in Florida half the year and up in Wisconsin half the year. I grew up living next to them my whole life, so I was very fortunate to be there for a lot of it. My mom and I both work at the hospital that she got most of her treatment in up in.
Speaker 2:Wisconsin.
Speaker 1:I work in the laboratory, so I got to sit with my grandma through her blood draws before she would be going to her infusions, in which my mom, who is an RN at that hospital, got to sit with her through that.
Speaker 2:Okay, okay. So a lot of kind of familiarity with healthcare and the healthcare system before this even took off.
Speaker 1:Yes, okay In addition, my mom's sister is also a nurse and caregiver. So by the time my grandma's condition was really declining. We actually never had a nurse come to be in-house with her. We never had a hospice nurse, even though we were about to get one, but because of my mom and her sister's backgrounds they were able to do that care for her. So they took a lot of the emotional toll on that, but they were really grateful to be able to support her in that way.
Speaker 2:Wow, okay, so that's two major differences in terms of the type of care that I'm hearing. And you're talking about the physical aspect of care, which takes a level of skill set that your mother and her sister already had, and then, just on top of that, the emotional caretaking and so, okay, that is really special. I don't know if I've heard of that particular availability so close to a person as of yet, but what do you? Okay, let's get into your understanding or just kind of how you're approaching things now, how do you think or talk about cancer screening in your family?
Speaker 1:Okay, I tell them to do it earlier than you think you need to, because in situations like my grandmother, she didn't know for a long time, she just knew she felt very tired. And it got hard for her to do things like walking the dog. She'd have my grandpa do it for her instead. She also wanted to uphold a certain sense of dignity as well.
Speaker 2:Sure sure.
Speaker 1:So I always tell people the second you feel like something's off, go in, go and see.
Speaker 2:Okay, and you talked about it in a very specific way, right? Just in terms of what is it that you do regularly or normally, and can you still do these things? If you're not able to do a certain thing, like walking the dog, then it's like something is wrong. Something is wrong. We need to go ask questions. Okay, okay, um, and so, um, what would your approach now be to um cancer screenings that you might want to take on later on?
Speaker 1:my approach would probably be ask questions if you think anything's wrong. I am a big one. I love that hospitals now have a portal option and I'll send my doctor like little comments or emails if I like. Have something that just happened that is pressing.
Speaker 2:Okay.
Speaker 1:But otherwise I'll schedule appointments as a student. They make it really easy. With UHS. We actually get a lot of care for free.
Speaker 2:Okay. It's included with our tuition yeah, yeah, okay, so they that that is a great point. So what would you recommend to people to understand about cancer screening?
Speaker 1:I'm honestly not quite sure how to answer that question. Something to understand about cancer screening? I don't know if I have an answer for you, okay.
Speaker 2:So even though you work in the lab space and stuff, like that do you work like? Is there a particular set of conditions that your lab focuses on?
Speaker 1:We aren't able to help a whole bunch with the cancer aspect of it. We are a very small community so we can do like monitoring your hemoglobin levels, things like that. But tests that are more advanced than that we will have to send to an outsourced lab that's a little bit bigger.
Speaker 2:Sure, sure, sure, sure. Okay, yeah, so I guess, just in terms of do you have any other questions for doctors about cancer?
Speaker 1:interesting to me because if we knew more about our genetics, it would help a lot in the treatment process of it, rather than trying a medication being like oh, this one doesn't work for you, let's try a different one.
Speaker 2:Okay.
Speaker 1:Kind of mitigate some of that.
Speaker 2:Sure, sure, sure. I like the way that you're thinking on that, right, so not having to do the guesswork, um, unnecessarily. Yes, okay, so, yeah, I wanted to take out that piece. Okay, uh, what? What advice would you have for somebody who is having to support a family member through a cancer journey?
Speaker 1:make sure you take care of yourself too. That's a really big one, because you don't realize that, although you're offering them a lot of support, you need support too. This is something you're also going through, okay, okay.
Speaker 2:And is that something that you saw, just in terms of your mother and your aunt, how they okay? Yes, 100%.
Speaker 1:My mom does a little bit better at kind of expressing emotions as they come and I was grateful that I was able to be there for her a lot in that time. And one who I really had to help was my aunt. She did a lot of the care as far as medications went and stuff, so I could tell that kind of took a bit more of a toll on her and she was a rock the whole time and when my grandmother did pass she's still like, and when my grandmother did pass she's still like she shed a couple tears as the moment happened.
Speaker 1:Of course it is her mother. But even the next day she's like okay, we have to do the eulogy and start doing funeral plans. And I came up to her and I just like kind of took her by the shoulders and I'm like, hey, you can mourn your mom and you can also just look at how much work you just did and be proud of yourself and realize that you've done a lot and you have a lot of weight on your shoulders and you can take a breath, you can take a moment. You don't have to start everything right away.
Speaker 2:Yeah, okay, that's very beautiful. I really appreciate you for sharing that particular perspective. So it just so happens that the Carbone Cancer Center hosts an annual fall conference. It is available for students to attend and this year the theme is caregiving. And so you know, just as the you know, the calendar kind of rolls by and stuff like that. I would encourage you to potentially look into that conference, that day long conference, to attend this year, specifically because of what you shared about caregivers. Is there more to the conversation that you could potentially add? And then also what can be learned from the medical professionals that are talking about this topic? So later on in October, please tune in or stay tuned for the annual Fall Cancer Conference that the Carbone Cancer Center hosts.
Speaker 1:Can't wait.
Speaker 2:Awesome. Thank you so much, Ellie.
Speaker 1:Thank you.
