Episode 3: The Response
People say the darndest things. In this episode, Kayla and Ella discuss what’s helpful, what’s hurtful, and why saying nothing is perhaps the worst of all.
SHOW NOTES
Recommended reading and listening:
“Everything Happens for a Reason: And Others Lies I’ve Loved” by Kate Bowler
“Terrible, Thanks for Asking” with Nora McInerny
TRANSCRIPT
Kayla 0:09
You're listening to the My Sister's Cancer podcast. I'm Kayla Crum, registered nurse and writer.
Ella 0:15
And I'm Ella Beckett, social worker and cancer survivor.
Kayla 0:20
We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass and lots of support.
Ella
Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone. So let's make it a party and carry it together.
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Kayla
Welcome back to episode three of the My Sister's Cancer podcast. I'm your co-host, Kayla Crum, and with me today, as always, is my sister, Ella Beckett. I wanted to start today with a brief reminder of our last two episodes. In the first episode, we discussed Ella's diagnosis of Hodgkin's lymphoma at age 18, how that took place over about a month and caused her to move out of college the day after she moved into college. And then in episode two, we discussed what we've come to call the rollout, which is telling who in what order your news both at the beginning and along the way. So now that leaves us with the response, which is how people in your life react to your cancer news. That can be a complicated topic as well. So, Ella, I wanted to start by asking you about that very first weekend. It happened to be Labor Day weekend that you had the news, and if I remember right, your first instinct was to kind of hunker down at home and give yourself a few days away from people. So let's start there.
Ella 1:49
Yeah, I believe we talked about this in the first episode, but yes, you're correct in that I moved home for that weekend, but then also indefinitely to really focus on treatment and just getting better. I remember clearly the word “avoiding” comes to mind. I think, as you said, I just hunkered down at home and I think I really avoided people because in many ways it's a lot easier to just avoid and not even have to deal with the response to this kind of news. I think when something bad happens to you, you're trying to process that yourself, but then you also have to hold the weight of how everyone else in your life is going to respond to that news as well. And so I think in many ways, it was just easier to avoid and stay home and not even deal with the response. That's not to say that avoiding was the right thing to do, but I do think, in some ways, it gave me a few days and our family a few days to really process through it together before facing people, so to speak. A few people did stop by our house in that first week or so to show support. But I was pretty apprehensive to seeing people because I think I was just so unprepared for what - what the response would look like.
Kayla 3:19
Yeah, I don't blame you for that at all. Especially with it being you. I obviously don't know how that feels when it's your own news. I remember me and you and mom and dad being home together that whole weekend and it kind of felt quiet around the house. Almost like we were all tiptoeing around this bad news that we had gotten. We had gone to the beach since it was the final weekend of summer and we live in a beach town, but we went to this beach a little farther out of town so we didn't have to see people we know, which is fair. I think there's a line somewhere in there between avoidance and self care. So that first weekend especially, I think it was probably wise to take a minute and be at home and be alone or alone with your family. But then hopefully as it went, you opened up a little more to support and I'm sure we'll get into that down the road, but maybe the first time of cancer differed from the second time and kind of how vulnerable you were with people along the way. It's just a lot to take in. And I remember my main memory from that first weekend is going to church with our parents. We grew up in a Christian home and had been at this church for about ten years. They were sort of like our community within our town, like a little mini town that sort of helped raise us. It takes a village, as they say. We were pretty close to that church, and the whole congregation gathered around me and mom and dad and laid hands on us and prayed for you and for us. And I know you didn't go because you knew they were going to do something like that and you just weren't ready. And I totally respect that. But I know that for me, that was something that felt really comforting at the time. Just a reminder that, okay, your world has been turned upside down, but you still have these people around you who are praying for you, who are here to help support you through it. Just for our listeners as a disclaimer, that doesn't mean I was totally okay with my faith in God the whole time. I'm sure we'll talk more about that in future episodes as well. But that first weekend, that was something I was kind of grasping onto. So as we moved away from that first weekend, I had to move back into college and do my senior year, and you had to move back home when you had just thought you got to leave. So do you really remember kind of coming out of that avoidance stage that first time you had cancer? Or would you say you kept pretty much to yourself?
Ella 5:58
I think that's a really good question. Overall, I would say… retreating to home and staying within sort of - that safe bubble was kind of a safe spot for me throughout everything. And I think I emerged in some ways, but also never really emerged in other ways. So because I was at home that first weekend, a lot of the response that I received was virtually via text messages, messages on social media, and so I felt that support. But I do think it's different being in person with someone. And I think in many ways I wish I had reemerged fully in my social circles. I think anytime that I went out and did something with people, not necessarily my closest people, but I would try to do, like, a college function or something while I was going through treatment, I feel like a part of me was always kind of holding back, if that makes sense. Yeah, I think there were times where I just didn't know what the response was going to be, so I still just held back.
Kayla 7:22
That reminds me of that first time you run into someone you haven't seen since the news. And I think in general, we're uncomfortable to mention something bad. It's weird the first time you see a person after a death or bad news. And I’ve felt this awkwardness in myself of like, oh, I don't want to bring it up, we're just passing by in the grocery store or how do I do this? And if you know that person on more than just a waving basis… I feel like it's probably better to just bring it up because they're already thinking about it and just hearing you saying, like, that you had a hard time letting yourself be fully in the moment or whatever because you just weren't sure how you were being received. And that just motivates me even more to just kind of, like, clear the air with the person and just sort of get that out of the way when you see them. Because I remember you had some instances where you saw old friends from high school or college or whatever, and they just never mentioned it. Right. And then that kind of leaves you like, this is weird.
Ella 8:35
I just feel like what you were saying was really resonating with me because I just remember feeling so strongly, like, okay, now I'm the girl with cancer. And that was just, like, who I was. And so a lot of times I didn't want to talk about it or I wanted to be someone other than the girl with cancer. But then for the people who were really close to me in my life and just never really acknowledged it or acknowledged it once and then moved on with their lives, it was like, that was hurtful, too. So I don't know. I think it's really interesting because I felt both things at the same time, right? Like, two things can be true. Like, you can not want to talk about your cancer, but it's also really hurtful if someone doesn't talk about it, if that makes sense.
Kayla
Yeah. I want to say here, towards the beginning of this episode, that our intention is not to shame anyone for saying the wrong thing. This is more meant to thoughtfully examine better ways to address stuff like this, or at least for us, what was hurtful and what was helpful. And we'll look forward to your comments and feedback on that as well. As we've said before, and we'll say again, take your cue from the person. So what I'm hearing you say, Ella, is that you didn't want to be that girl with cancer in every social function you went to, but you also were currently consumed by getting treated for cancer. So somebody bringing it up to you: Hey, how are you doing? I know you're going through cancer treatment. Then you can say, you know, it's been hard, but tonight I'm trying to just put it to the side. Like, then cool, like, book closed. And that person doesn't need to take that as a rejection, that acknowledges it, that shows they care. And then you are in the driver's seat to be like, okay, let's move on. Or you can share more if it's, like, kind of a setting where you wanted to do that. So I always feel like there's a… there's often a way to acknowledge it and then let them kind of dictate how to follow up. I think that what sticks out in my brain is the people that addressed it once and then never, ever again. So, like, immediately after diagnosis. They were like, hey, I heard about your sister. Like that sucks. And then never bring it up again. Because there were definitely people who I told at college the first time or at my job when you relapsed that never brought it up to me again. And I - I try to have more grace for that nowadays. Like, if I tell someone now, oh, yeah, my sister had cancer five years ago, and whatever, if that somehow comes up, I don't expect people to bring that back up to me. But when you were actively being treated and people knew that, yeah, I don't know. It was hard to work alongside people every day who just pretended like that wasn't happening. I'd 100% rather someone tells me, even if you want to save it for the lunchroom or before, after work, so you don't disrupt someone's workflow or something or slip them a note or a text. You don't have to interrupt someone's workflow or their school in the middle of class, but there's ways to tell people you're still thinking about them. Especially for me as a sibling, I felt like if it had been my spouse or if I had a child or maybe even a parent, I guess, I don't know for sure. But it feels like the reaction would have been different because I watched some coworkers whose parents or children went through some hard stuff, and they got like, a lot more support at work than I ever did. And it's not a competition, and I don't begrudge them that support at all. I just think we don't think of siblings as being a close part of someone's life in adulthood in the same way as a spouse, a parent, or a child. And in some situations, that's true. People grow apart or they don't have siblings or whatever. But especially for us, we were so young still. I don't know. You're still a huge part of my life, and it just felt like it wasn't acknowledged in the same way.
Ella 12:42
Do you think if we were still living in the same household together for all of it, for both diagnoses and everything… I don't know, theoretically, in another world, if we were a little bit younger and were living under the same roof, do you think that that would have been a different experience for you?
Kayla 13:02
Yeah, I'm sure it would have changed a lot of things. I remember the first time you were diagnosed, I tried to kind of keep doing my normal college life an hour away from you and just couldn't do it. I felt like I was in this bubble separate from you and mom and dad. And so I started coming home multiple times a week, commuting an hour each way, and even sleeping at home a few nights. Because I just couldn't handle feeling like you guys were going through it and I was coping on my own. So I think I maybe would have even gotten more support by osmosis. I just wasn't home as much for the drop by meals and the cards and I don't know, it's so hard to picture an alternate universe. But then the second time, when I was married and in an apartment also an hour away, I didn't come home as much. And yeah, same thing. It's like, maybe I would have felt more support had it happened, like you said earlier in your life. I don't know. I'm also curious how the relapse felt to you compared to the first time, the response, I guess, to the relapse a year later.
Ella 14:15
The relapse was so much harder on our family, like the news of the relapse finding out that it was back, but the response to the relapse was a lot smaller and less of a big deal. So another way to phrase that - people already had processed the news that I had cancer, and so to learn that it was back less than a year later was less shocking. Their brain had already done the difficult work of processing that initial news, and so in their mind, they were like, yes, Ella has had cancer. So then when it came back, it was like it rocked our family - I would argue just as much, if not more, than the initial diagnosis, but then the response was just less overwhelming in a positive way. Would you say the same?
Kayla 15:19
Yeah, I think I hear you saying that for us, it was worse. And for everyone else, it didn't hit them as hard. I think that's just human nature. Like you said, the shock factor was gone. This girl you grew up with or whatever, however people conceptualized you, wow, it could happen to me. This girl in my neighborhood, this girl in my class got cancer. That element or layer to the diagnosis is gone when someone's already been diagnosed, and now it's a relapse. But for us, gosh, it was, like, way worse. For me personally, I think as a nursing student, and even a nursing student who had an eye for working in the cancer field, when you got diagnosed, it was devastating. But I was like, okay, we're going to do this. All the doctors told us it was going to be a short four month course of chemo. It was a very treatable cancer. They were kind of like, this sucks, but we'll get through it. And so I very much had that attitude and powered through it. I think our whole family sort of did that first time, and that's what we were sort of told to do. But then when you relapsed a year later, it felt like this huge betrayal, almost like the rug was pulled out from under us by the doctors, by God, by your body, which none of that's super fair. It's just the chaos of the world, but it's… it just felt so much worse to me. The second time. I'm not trying to shame anyone. Like I said earlier, I don't think people meant to be less supportive. There were definitely people who were super supportive the second time. Interestingly, there was maybe, like, different groups of people both times that kind of cropped up in different ways to help and support. But that initial response after relapse was just less, like you said, less overwhelming, almost like less numbers of people and less emotion behind their condolences, in a way. Whereas for me, I was thinking, if the hell they put you through last time didn't cut it, what new atrocity will they try now? We already had the worst time of our lives, and it wasn't enough.
Ella 17:35
Yeah, it was like the relapse was just an absolute slap in the face. I think another factor in all of this, in terms of the response of the people in our lives, is that the first diagnosis, I was really in between communities, right? My people were kind of in flux because I had just graduated from high school. So in some ways, you kind of say your goodbyes to that community. You really physically are not with those people that much anymore unless you're really good friends and you make time to see each other. And I had only been at college for one day, so I really hadn't established a community there. I mean, I knew people, I had connections, but I was in this really weird limbo between two seasons of life, really, and I think that definitely had an effect on not only the response, but also just the overall level of support and community and friendship. I think if my diagnosis had come earlier and I was still in the thick of high school, I think that would have looked a lot different for me. And I think the same is true if it had come a little bit later and I was rooted and established at college, I think it would have definitely been a different experience overall. So then the second time around, Kayla, your community was really in limbo. Do you want to speak to that?
Kayla 19:11
Yeah. It's funny. We've talked about relapse so many times between us, and yet not until we were getting this episode ready did I really realize, did it click for me, how I was in a life stage transition and how that maybe contributed more to relapse being terrible than I thought. I always just kind of thought it was because I felt tricked, like you were better, then you weren't. But I had graduated college, gotten married, and started my first adult job as a nurse, all in that short six or so months, six to eight months that you were technically in remission. So yeah, that was a lot. I was going through a lot of change, positive change in my life, but I mean, that's a lot of change to deal with all at once. And like you said, my college community had scattered. We had graduated, people were trying to find jobs all over the country. The first time was hard, but I was still in that rooted college community I had built for three years. And so I did have people to turn to, whereas I walked into my new job… I didn't even get out of orientation with human resources before you were relapsed. And so then as I'm meeting all these new coworkers, none of them are my friends yet. You know what I mean? You haven't figured out who's going to be your work bestie and who you don't share your deep, dark secrets with. There's always those people too. So it was just a difficult time to be learning new personalities, learning a whole new job, and not really feeling like I had that anchor of community support the second time. So. I do want to shift a little bit, though, to thinking about some standout positive responses that we remember. I think again, good old human nature biases us to remember the bad stuff as like a self-protection measure, but I definitely can think of a few examples of like, a really positive response that stuck with me. Do you have any that you remember from that time?
Ella 21:29
Yeah, there's a few that really stand out to me. Several family members and friends that showed up either with meals or just some great positive, even funny care packages. One of my aunts got me an eff cancer shirt that was a huge highlight. She also has her own cancer story and so, it's a club that you never want to join, but thankfully she turned to humor and kind of taught me how to laugh in some of the hardest days. I also had someone that you had known, Kayla, at college, who had walked her own cancer journey, and she just put together the most thoughtful care package for me filled with a bunch of different things that I could use specifically for treatment that had really gotten her through. And that just spoke volumes to me. I just felt really supported, and she's actually turned into a great friend of mine, so I'm really grateful for that. I would also just say reflecting on all of this has really made me think about how important it is in those moments in other people's lives to really just lean into what your gifts are or what you're naturally really good at. I think a lot of people's instinct is food, which is never a bad instinct. Like, if you're a good cook, make them a meal. But I think not everyone's gift is making a meal, and that can even be overwhelming to people. So I think when something happens in someone's life that's really hard or even good things right, a new baby is born. I think when you want to show support to the people in your life, you can really just lean into the things that you're really good at. If you're a words-of-affirmation person and words just come naturally to you, just write some cards to the people in your life. If you have some extra time and you just want to help them clean their bathroom, just lean into the things that you're really good at, because I think those were the things that stood out to me, were the people who just did what they do best and just really showed up for me.
Kayla 23:55
Yeah, I really like that framing. I hadn't thought about it quite like that before, but looking back, some of my best memories from that time are of the people who gave me what they had to offer. A really good childhood friend of mine was at the same college as me when you were first diagnosed, and obviously we were both busy like seniors in college, but she was just like, how about we have lunch once a week and you can just update me and just tell me how you're doing. And so that was huge for me because she was just giving me her time, which is honestly often our most precious commodity, and just letting me unload on her. And that's an emotional toll. Like, I don't take that for granted. She carried that space for me for an hour every week. And I think that that was helpful in a way that my roommates couldn't particularly offer. There were ways they supported me in daily life, but if they let me unload on them like that constantly when we lived together, that wouldn't have been healthy for anybody. Right? So it's like, that's not what they could offer me. It's just like a constant therapy session, basically. But this friend could drop into my life for an hour every week and let me do that. So, yeah, trying to have realistic expectations for yourself and don't let the fear or the idea that you have to do a meal or you have to do the vent session, the therapy session paralyze you and keep you from doing anything. So it can be even texting every day, every week. Maybe that's all you have in you. But that little text is going to really remind them, like, wow, we're like three months into this and this person still texts me every Wednesday. That's incredible. Set a reminder on your phone and text once a week. That will mean so much to that person. And it really doesn't take that much effort from you. And if that's all you can offer right now, like, cool. That plays into your strengths. I really like that framing of it. For sure. I also want to say that don't be afraid to ask again. If you first asked people, what can I do to help you? And they weren't sure because diagnosis is such a time of overwhelm and like a whirlwind of getting your stuff scheduled, like you had to get a port placed so that we could do your chemo and your first chemo is inpatient. And like, we had to literally move all your stuff out of college. But then like a month or two down the road, that's maybe when we started needing some support or like when our initial reserves, both emotionally and physically were tapped, so that's then where you could be like, hey, I don't mind doing laundry at all. Could I come over and do your laundry? Or that's maybe more when you need the meals more than the first week or something, stuff like that. Or transportation. I mean, you were lucky to have mom always driving you to everything, but especially if you're a little bit older and you don't have your parents as your caregivers and your spouse is working or you don't have a partner. Driving people to chemo can be huge because I can't imagine driving after you feel so gross like that. So, again, so many ways to help. Don't be afraid to ask and don't be afraid to think or to play to your strengths because no contribution is too small.
Ella 27:07
For sure. I think something else you were saying made me think of, oh, what can we do to help? Right in the beginning, especially right after diagnosis, right. I think that's a lot of our instinct is like, we hear that something bad happens and I mean, I think that's a great natural instinct that we want to jump in and help. But I think when you ask the person or the family or whoever is in the thick of it and you're saying, what can we do? Or even with less active language like if you say, oh, we're here for you, just let us know. I think that's really tough because then it puts the responsibility on the person going through the thing to have to reach out and ask because I think it's really difficult. I mean, I know from personal experience it's really freaking hard to ask for help and I mean I think it's really humbling, right, to be like oh, our leaves need to be raked because we just truly haven't gotten to that or yeah, we are really running low on the funds this month. I think it's hard to ask for those things, so as much as you can - and again, I think this is, you have to know the people pretty well to do this, but really just showing up in different ways, maybe not physically just showing up to their homes because I think that can be tricky too. But I think instead of saying, okay, what can we do to help? Or hey, we're here, just let us know. Something that I found really helpful is, again, once you've identified what you're good at or what you can actually feasibly offer that week, like, just saying maybe if this person has young children and it would be helpful for you to watch them for a few hours, just be like, hey, what day this week can I pick your kids up for a few hours so that you can have some time to yourself? And framing it that way so that the person going through the thing really only has to make one small decision.
Kayla 29:13
Yeah, that's so true. I definitely second the “don't necessarily just show up unannounced” thing. You can for sure leave little gifts on the doorstep and not try to come in. But I'm sure it's difficult, especially if you're home alone, to have people show up to visit you. But like you said, show up in other ways and be specific and don't give up. We've just kind of talked about a lot of the positives and ways to be helpful, but as promised in the beginning of every podcast there is a sprinkle of sass in this conversation and I did want to transition to some things that were said to us back then that were maybe less than helpful and just unpack that a little bit. I just think that if you haven't gone through something difficult or life-threatening in particular, you don't always think about how the words hit home when you are going through that situation. So like I mentioned earlier, we come from a faith background, a Christian background, so that can have ups and downs, goods and bads. Just like every life situation, there's some layers there of people trying to put on “God's got this” or like “there's a plan for you, God gives his strongest warriors his toughest battles.” And some people take a lot of strength from that. But it can also put a lot on the person suffering from cancer to make a silver lining or feel like they have to be on this pedestal, being this upright Christian, battling it out for God. I love what Kate Bowler has to say about this. She's an author and a professor at Duke University. She wrote a book called “Everything Happens for a Reason and Other Lies I've Loved” and she's a colon cancer survivor in her thirties and just happens to be an expert on the prosperity gospel, which is kind of that idea of toxic positivity and that if you follow God's rules, everything will go great for you. So obviously getting a cancer diagnosis doesn't really fit with that worldview, and so I don't know, all of that can kind of grate on you a little bit. And some Christian songs at the time just made me crazy. Like some of them felt so lovely and touching to my heart and some of them I wanted to be like: “fake news!” I wondered what people said to you or if you got a lot of the Christianse stuff that kind of hurt at the time.
Ella 31:59
Oh, absolutely. And I do want to preface this... I know you've already said something to this effect, but I do think people have good intentions with the things that they said or say, but that doesn't mean that it's not hurtful in that moment. And so I think, yeah, we're just discussing this because, “the more you know” right? It's helpful to hear from someone that maybe that phrase doesn't land like you think it might with someone. I think one, like you were saying that a lot of Christians really turn to, and that I heard quite a bit was not even necessarily a specific phrase, but the whole idea that this is just for a greater purpose, God has a plan for this, and this is all just how it was supposed to be. And I don't need to get into some big theological discussion here, but even if that's true, it doesn't really help in the moment, you know?
Kayla 33:16
A pastor once said to me and a group of students when I was in college, “Some things are always true and at times better left unsaid.” So she was talking about a particular Bible verse in Romans which is like, “all things work together for the good of those who love the Lord.” And she was like, when she kind of walked a hospice journey with a family member, she had to learn the hard way like, Romans - I think it's like 8:28 - is always true and sometimes better left unsaid. And that's just stuck with me because, like you said, theology debates aside, you can believe something's true and not need it said to your face every other day. Or, like, by the person drawing your blood. Or by a well-meaning church lady. Like, other people trying to make meaning out of your suffering while you're literally still in it. It's A) kind of robbing you of making your own meaning out of it and B) you're kind of rushing things. Like even if this is some grander plan, which I don't know that I even theologically go there, but if it is, we're not to that part yet. So maybe let's wait and not rush the greater purpose.
Ella 34:43
I think it also puts pressure on the person going through the thing to make meaning out of their suffering, right? Like you were saying, we're not there yet. When you're actively suffering is not really the time necessarily that you're going to be drawing all these philosophical or these, I don't know… and I think in some ways, I tried to do that because it felt like a comfort to me to pull meaning out of what I was going through. But again, I think that again, you follow the person's lead, right? Like, if the person is the one saying these things, that's different than you almost preaching that over them and their situation.
Kayla
Yeah, I remember distinctly, I even was a little bit too much like, “You got this” type of stuff to you early on, and you were what I would describe as sullen at times or withdrawn, angry, all of which you had every right to be. And I think that I rushed things, especially the first time you got cancer, trying to be like, “you can do it. You're almost there.” Your whole life has been affected by it in some ways for the better, like your career as a social worker, you focus on medically fragile kids and kind of reaching to those families who are struggling with the health care system. You found your husband, another cancer survivor through this journey, and so it's like there's been some good that came of it, but that's not something we knew or could ever predict when you were actively puking after chemo. So it's, like, not the time to say it. Yeah. Another one that comes to mind for me is the battle language around cancer. We kind of mentioned this before, like, that “God gives his toughest battles to his strongest warriors,” or “she fought” or they'll say, like, in obituaries, like, “so and so lost their battle with cancer.” I don't get that. Some people take comfort in the whole cancer warrior mentality. Like, I see it on bumper stickers and stuff. So if that's you, like, props, again, take your cue from the person. If they want to be a fierce cancer warrior, more power to them. I just struggle with, like, I've seen a lot of my patients die of cancer, and I want to be really careful because obviously you're still with us. And so I haven't experienced a close family member die from cancer in that same way, but with several patients who died, I've seen the difference when a family holds space for them to sort of die with dignity, and they frame it as, like, sad, but, like, meaningful versus someone who was white-knuckling it to the very end, and then died kind of a traumatic death because they just refused to, I don't know, be real about how we can't quite control this journey and we can't just toughen our way through it, that kind of thing. What do you think about the battle language?
Ella
Yeah, I really don't want to offend anyone that finds comfort in this analogy and really likes this phrasing, but I personally am not a fan because I think what you said, it goes back to what I was saying earlier about putting pressure on the person. I think the battle analogy really, in many ways, is just putting a ton of pressure on the person with cancer. And it's like, I remember so clearly so many people saying to me, like, “oh, my gosh, you're so strong. You're handling this all so well. You just keep going.” And it's like, yeah, but do I really have a choice? I don't know. I just think anytime that you're framing it as, like, the person is actively in charge of fighting this thing off is just really harmful. Because at the end of the day, it's like, no, actually, it was the chemotherapy and the radiation and the stem cell transplant, and it's like sometimes there are not other options for people, and that doesn't mean that they're losing their battle, right? That means that medicine is not advanced enough to fight - here I go using fight - to fight for them, right, to eradicate the cancer from their body. That's not because they lost a battle. I just think that that's really harmful. And I have lost a handful of friends to cancer. And like you said, many of the obituaries read that way, and I just think so many of us have used that language in our day to day life, and I don't know, I just find it really unsettling.
Kayla
Why don't we say, “So and so lost the battle with congestive heart failure” or, like, lost the battle with - I guess maybe people have said if they lost the battle with mental health or with drug addiction, I've maybe seen that language. But, like, when old people die, they don't say, like, well, “they lost the battle with, you know, dementia.” I don't know. I feel like it's specifically often used around cancer. And like you said, in a way that's not always positive. I find that among us, in our family, we tend to use the journey language. Cancer is like a journey. Where are you at on your path? And I get that that language, too, that works for us. Some people, I think, find that a little hippy dippy or, like, I didn't set out on a journey. Like, I was dragged here. You know what I mean? It can seem a little like I'm on this epic quest, like, almost similar vein of a cancer battle. We're just struggling to put language around something that there are truly no words to quantify, qualify. And I often find myself saying that to people now, like, “Hey, I heard the news. I wish I had the words. I know there's no words that I can say to make it feel better, and I wish there was. Like I'm sorry.” So sometimes that's better than anything. But what you said a minute ago about you're so strong, that really resonated with me, because I got a lot of that, too. People often would say, “I don't know how you do it. You're handling it so well. Like, wow.” But then they didn't follow it up with being like, are you actually okay? Or like, it almost felt like I couldn't then say, “Actually, I'm not doing good at all.” And this is partly on me. I had a really good facade, like, I achieved in school. I did decent at work. Everyone's different. And I started to feel like, do I need to have a public mental breakdown to get some support? It felt like people were like, wow, you're so strong, in a way that excused them from supporting me. Does that make sense?
Ella 42:18
Totally.
Kayla 42:20
Yeah. I don't think that's anyone's intention. Of course, like we said, people don't mean ill 99% of the time, but, like, normal life doesn't just stop when this happens to someone close to you. Like, for those of us, like myself, who weren't your direct caregiver and weren't you, especially the second time, I had just gotten married, and my husband was finishing school, so I literally had to work my full time job to pay our bills. And that was the first time I was even in that situation as a young adult, before I'd always kind of had the cushion of college and mom and dad. So it's like, “you're so strong.” It's like, well, I don't really have a choice. I have to keep showing up. But it'd be nice to get some acknowledgment. I guess that's what they're trying to do. They're trying to acknowledge that you're being strong. But…
Ella 43:14
I think another response that we experienced, we could call the detail-obsessed people. So these were the people in our life that asked a whole lot of questions. I know that we all kind of have a natural tendency to want to know details. Kayla, I think for you especially, you've spoken to this, about since you are a nurse, when you hear of something that happens, you want the medical details. I think that's a normal instinct to want to know how you maybe could have fixed it and if they're getting proper care and everything like that. But there were the people that asked so many questions right after I was diagnosed, well, “How long did she have it, and did you have it when you were graduating from high school? Did you have it all summer? Like, did you have it at your dance recital?” All these questions about the timing and the details and how long that cancer has been in my body, and it's like we don't know the answer to those questions. And it's also not super relevant right now. That's the people who are obsessed with how we got there, right, to the diagnosis. So the people who are looking back and asking all these questions, but then also the people looking forward. And, Kayla, as a nurse, I feel like you might resonate with that some. Do you want to speak to the future-looking people who asked us a lot of questions?
Kayla 44:51
I want to make sure people are getting the best care, that they have a good understanding of what's happening to them. I hate when people are poorly educated by their doctors, so I sense this tendency in myself as a nurse. When I hear of people who are sick or going through something, I want to make sure everything's good. But a lot of the people that asked us pretty invasive questions weren't necessarily medical people. There's a time and a place, especially if you have a specialty as a doctor or something or or you had a very similar personal experience. That's probably a whole other episode. You don't want to put your experience over top of this person, but there's a place of care where you can suss out if the person is getting good care, feels well-informed. But the people that are like, well, “How many treatments? How many pokes? Like, what are her blood counts today? What were they yesterday? Like, is that good or bad?” Like, just every little detail. I don't understand the non-medical people asking those questions. I mean, you're not really medical, Ella, do you get that? For me, from a nursing perspective, I can see the desire to know, but I don't get the people that were pestering us for medical information that don't have any medical training.
Ella
Yeah, one thing that I've thought of, one possible explanation is - and I see this in myself when I have more details or a fuller picture of what's happening or a plan also is very helpful. I think that that gives me a sense of comfort and a sense of control. I think with that initial diagnosis, everything just feels so out of control that if you can start picking off these tiny details and, okay, well, what are we doing next? What's the plan of action? My thought is that some of these people, that helped them sleep at night right? Knowing that, okay, my doctors are actively working to make me feel and do better. In some ways, I think it gave them a sense of control and maybe less fear for me and what I was walking through if they knew exactly, maybe what was going to be happening.
Kayla
That's a generous interpretation. Thanks for sharing that. That makes sense to me. We do as humans grasp for any control over a situation. And that just harkens back to what we said at the beginning, which is that most of these people who said things that were less than helpful, meant to be helpful, or at least meant to be neutral and were just trying to cope with how they were affected by your news, which isn't great to hear because you're like it's kind of worse for me as the person with the cancer. But like family, friends, it does affect them too, and so I get where they're grasping for any sense of control over the outcome. Something else that I've had to watch in myself is that human desire for drama or melodrama. It's the same reason people say that we can't look away from a car wreck. We want to know all the juicy tidbits. So I try to check myself and my motivations when I hear about something terrible that's happened, especially medically, I'm like, okay, why do I really need to know this? And all the details. Is there somewhere I can be helpful? Or am I just gossiping, basically? And that's a hard self-reflection to do, and I still catch myself messing this one up. But that's definitely something we learned, being on the other side of it, to be careful of that tendency in ourselves. I think that one phrase that we haven't touched on yet that almost tops the list of my least favorite things is actually that word “at least.” When people say “At least, it's only stage two,” or “At least we have a great hospital nearby,” that just grinds my gears.
Ella 49:06
We can just throw “at least” in the trash, just like a public service announcement. Don't use those two words in that order again. If you have, I have too. But, like, going forward, really just try to think about what you're saying and why you're saying it. Because I feel like when you say “at least,” if you start any sentence with “at least,” really what you're doing is minimizing that person's experience. You're saying, well, hey, here's a way that it could be even worse. So you better be grateful for how it is, because it's not the absolute worst, but that's not helpful. And to minimize what someone is walking through is just a really crummy feeling for that person. Yeah, I couldn't agree more. I feel like when you say at least, you're creating distance between yourself and the person you're trying to support by shoving gratitude down their throats. And I don't think that's the intention, but that's how it feels.
Kayla
Brené Brown, famous social worker, author, podcaster, has this video that we'll link to in the show notes about empathy. And it goes over and over this phrase “at least,” and how people like, in the video, the little cartoon characters will be like, “Oh, you had a miscarriage. At least you have other kids. Oh, you didn't get into your top school. At least you can go to community college.” Like, just any situation in life. When is that ever helpful? I wrote a poem about this, something about like, don't try to find the silver lining. It's not your job, it's ours. And I just think that's true. It's like what we were talking about at the beginning of this episode. There will be a time to make meaning and find purpose out of this situation, hopefully. I don't want to force that on anybody, but a lot of people come through an experience like this and do grow or find meaning, learn some lessons, but saying at least is, again, forcing a silver lining or a meaning or a purpose or gratitude on someone who's literally having the worst time of their life. And it just, yeah, it's on the bottom of my list, for sure. I think it's often an indicator that the person speaking is uncomfortable with your suffering, and we all have that tendency, but you’ve got to push through and not say those two words.
Ella 51:45
So next week, we're going to dive into one of these examples a little bit deeper and have a bit more of an educational lens than some of our other episodes. So we use the phrase “Great Aunt Hilda” to represent just some random person that people will reference as having had cancer. So when I was diagnosed, a lot of people said, “Oh, well, my great aunt Hilda had cancer in her armpit nine years ago and she's fine now.” But that's just so unrelated to what we were walking through. And so, as we've said, one in three Americans have cancer at some point in their lives. And I think in a lot of ways they bring that up to connect with you and to resonate with you or encourage you that things will be okay. But the worst ones are when they're like, oh, yeah, so and so died of this. And you're like, oh, that's super helpful. Thank you so much for telling me that. Really wanted to hear that at the beginning of my journey. But we're just going to try to pull out how diverse cancer is. And so with Kayla's nursing background and with everything that we've learned going through this, we're just going to dive a little bit deeper into the science of cancer. So we promise it won't be a boring science lesson, but we just want to acknowledge how no two cancers are the same, even when they're the exact same type, and just how vastly different everyone's experience is and why those comparisons are often not helpful at all. So thank you so much for listening along today. We'd love to hear in the comments, feedback, what resonated with you, what didn't. If you agree with us on some of these phrases, or if you disagree with us, we'd love to hear that too. If you have found some of these to be helpful, if you've been through a journey like this and want to share some of the horrible things that people have said to you, that's always good for a laugh, too. Or if you want to call out the good things that people have done for you for you, we love to hear all of that too. So we appreciate you being a part of this community, and we will see you next week.