Episode 2: The Rollout
In this second episode, the sisters discuss the near professional level publicity management that comes with a cancer diagnosis. I wish I was kidding.
RESOURCES
Note: the below templates are geared towards siblings of cancer patients, but could easily be edited to accommodate the patient themselves or any close family member/friend.
Click here for an editable email template that lets people know about your situation. If you work, go to school, or have any volunteer responsibilities, a blanket email to the person in charge asking for flexibility at the very beginning will come in handy for last minute needs or medical emergencies.
Is there anything you can let go, maybe even just for this season? Is there any way you can cut back on work hours, quit that board, or put your volunteering on pause? You may feel like you’re letting people down, but if you burn yourself out trying to maintain your pre-cancer schedule, that’s when you’ll truly disappoint everyone. If you struggle with how to write a quitting email, click here to receive a template you can customize.
TRANSCRIPT
Kayla 0:10
You're listening to the My Sister's Cancer podcast. I'm Kayla Crum, registered nurse and writer.
Ella 0:16
And I'm Ella Beckett, social worker and cancer survivor.
Kayla 0:21
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 0:29
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 0:42
Welcome to episode two of the My Sister's Cancer podcast. I'm one of your hosts, Kayla Crum, and last week you heard my sister and I discuss Ella's diagnosis with Hodgkin's lymphoma at the age of 18. This week, we're going to cover the next step in the story for a lot of people, which we've affectionately termed “the rollout.” Ella, do you want to tell the people what “the rollout” means?
Ella 1:07
Sure. Yeah. So we use the term “the rollout” to describe the entire process, from when you receive the diagnosis to how you're going to roll the news out to all of the people in your life. So these are the people that are closest to you, your friends, your family, your loved ones. But then there's a wider reach, too, with friends of friends and people in your school community or your work community, or even just people who follow you online. And so we found throughout my personal experience with the rollout that it can be a really tricky thing to navigate. And I think it's something that isn't necessarily talked about a lot, but I think it's something worth thinking about. So, Kayla, one of the things that we've talked about is how, after I was diagnosed, you kind of took on the role of press secretary in our family. In the White House, they have a press secretary, and that person is responsible for all of the public relations and declaring the news to various outlets. And so I really think that you took this role on in our family, and I would just love to hear you kind of speak to that and what that experience was like for you.
Kayla
Yeah, it's interesting because I don't think we ever formally discussed it. It's not like at the time we even knew to call it a press secretary, but we didn't even say “who's going to manage information.” It just kind of fell to me because mom and dad, with you being a teenager, were your primary caregivers. Dad was still working because somebody needed to, and mom took a leave of absence at one point and at another point was working part time, but mostly caring for you. And so as the only sibling and, like, the next closest person, I was in the know and sort of tasked - or took it upon myself to inform all the people waiting to hear about you. I would say I had sort of different experiences. I had less to do with informing everyone of the initial diagnosis or the relapse, because that was more something that you decided how and when and who. But cancer, as I'm sure many illnesses do, has a million little updates along the way. And so that's the stuff where it was difficult to determine, okay, how are we going to tell everyone? She needs two more rounds of chemo than we thought. Who gets that news? In what order? How broadly? Because you have everyone from grandparents, aunts, uncles and cousins, and we're close to our family, and then you've got close friends, but then you have, like you were saying earlier, professors, classmates, coworkers, like, church communities of both yourself and, like, your grandparents church, if you're in a faith community. And then social media, which we'll get to in detail later. But that's a whole other piece of the puzzle. So we definitely didn't do it right every time. I don't think there is one right way. And something that I came to sort of resent, honestly, is that it started to feel a lot like: we don't want to hurt anybody's feelings by having them be told in the wrong order. Right. Because there's sort of an order to these things. People might experience this even with a positive thing, like an engagement to be married, where you want to make sure you tell your grandparents and your parents maybe before you post it on Facebook. And I know sometimes toes get stepped on when things go out of order. It's kind of like that, but with 1000 little updates. And it's difficult to make sure that your dear older relatives are being informed sometimes who aren't even on Facebook. And then your faithful blog followers. Because of course, everyone these days with cancer seems to have some sort of blog update situation. Yeah, so that was an interesting role to play. Again, it was like unofficial, but I just sort of ended up being the person sort of sending the text to our closer people. And then you, I think, or mom would update the blog or your social media once something became wider known. 3s Yeah, that was interesting. I want to ask you about the first diagnosis. I remember our family, it was Labor Day weekend. It was like you, I think, got the biopsy on like a Thursday. And then you had your first appointment on a Friday or something like that towards the end of a week. And then we took the weekend and just were home as a family instead of me moving back into college. And you made a post that was very mature and seemed like you really had your stuff together on Instagram and Facebook. And I'm sure at that point we had told grandparents and aunts and uncles. I remember specifically texting my three best friends from high school and my three college roommates because those were sort of my close people at the time. My roommates needed to know why I wasn't coming. Right. Which is another piece. Sometimes plans change and you have to tell people who aren't necessarily high up in the order but need to know for logistical purposes. Yes, but I just remember a lot, we were constantly being like, wait - especially early on - is this okay with you? Is this okay with you? What are we sharing? That must have been a lot of decision making for you.
Ella 7:15
Yeah, I think I really appreciated how much you all asked me what was okay to share. But I do think I experienced some decision fatigue, for sure. I think I was so overwhelmed with the news myself, and then the thought of having to distribute that news and tell that news to other people was really overwhelming to me. And I think in some ways, that's really what pushed me to want to post about it probably sooner than I was ready was because then it was out there, and then I didn't have to necessarily individually reach out to all these… Of course, like you said, I made sure to reach out to the closest people first. We made sure to tell family before it was out there to the wider public. But I think to me, it was like, I just need to get it out there because then I don't have to necessarily think as much about the rollout of that initial diagnosis, if that makes sense.
Kayla 8:23
It does. And I think part of that is the size of the community in which we live. We live in a fairly small city. I more think of it as a town. I think it's technically a city. But small town America and within that a smaller like church community and school community. So it's the kind of place where you can't go to the grocery store without running into someone you know. So yeah, you'd rather they just know even though sometimes - and we'll talk about that in another episode, people can get awkward once they know, but you don't want to be standing there being asked questions about how college is going or whatever when you've left college for chemo. There is some element of help from social media in that aspect because it can just blanket inform people. I'm very aware as we're talking though, there's probably people who found out that way that were hurt by that. I know I've had that. I've been on the other end of that just, with whatever - engagements, deaths sometimes you just hear about stuff in a way you wouldn't prefer and there's no one way to do it perfectly. So I wanted to ask you too about - we've mentioned church a couple of times. We grew up in a Christian family and actually we went to Christian school as well growing up. So that sometimes can be a little bit more insular of a community. And one thing that, if anybody listening is in a faith community might be aware of is prayer requests, the ability to be prayed for in front of the church or by a portion of the church or over email by the church members. And that can be a double edged sword a little bit because it can feel really encouraging to have that many people thinking about you, texting you that they're praying for you, but also sometimes that can snowball and get forwarded. What was your experience with that?
Ella
Yeah, I mean, I think what you were saying earlier about how that can kind of cause things to be out of order in the rollout, I think this is one area when you were saying snowballing, this is what I thought of is that once you get it out to a church community, I think people are so eager to pray for other people, which is so wholesome and wonderful. But I think, as you were saying, I think then people can find out about things maybe before you had wanted them to, or people with the best intentions might share about news that was actually really private simply because they want you to be lifted up in prayer. But it can be not always a great thing.
Kayla 11:17
Yeah, and we're not going to do a theological deep dive here. But people think differently about prayer as well. 4s Some people think that you're praying to literally cure you completely where you wouldn't even need the chemo anymore. Some people think they're praying for you to have the strength to bear it. A lot of people are kind of in the middle. It's kind of a touchy subject even within a Christian subculture, for sure.
Ella 12:31
So, Kayla, I wanted to ask you, circling back to your role as press secretary, I think a big part of this, too, was that you were finishing up nursing school. And I know from conversations you and I have had in the past that the knowledge that comes along with the nursing profession can be a blessing and a curse as well. I think I felt, from my perspective, that you were certainly burdened with being the go-to for all of the questions about what I was going through. All of the medical questions were directed to you, and I just can't imagine how much that was to handle finishing up nursing school while also trying to navigate all these questions about your sister. It's not questions about some random John Doe patient. I think it was questions about how I was doing medically. And I think because you had all of that knowledge, maybe there was some more burden on you. I was just curious if you could speak to that at all.
Kayla
Yeah, thanks for saying that. I definitely did get a lot of medical questions. I remember for the longest time, my phone, when I texted, would autocorrect words like “call" to “CBC," which is short for complete blood count, because I was constantly texting medical jargon about your blood count and how you're doing and things like that. And the first time that happened, I just remember pausing and being like, what is my life? That my phone is correcting basic words to medical jargon. Yeah, I definitely think there was some element of friends and family… asking you how you were, or mom and dad, but then they'd get me alone and be like, but what does all this actually mean? And want the medical deep dive more. And I respect that they kind of shielded you and mom and dad from that a little bit, is my understanding. It's kind of the vibe I got from how that would sometimes come about. They'd be like, I talked to your mom and sister, but tell me the real story. But that was also difficult for me because I was close enough to you that all of it hurt me too. And then to try and kind of give people, like, the analytical 411 was difficult. 3s It was actually, in retrospect, easier the first time than when you relapsed and I was actually a nurse on an actual cancer floor because that was just, like, too much cancer all the time. And then I had the weirdness of, like, I'd let my work know what was going on in case of a medical emergency or just to know why I might be struggling. And then because we were literally doing care that you were receiving. Thankfully, you were on a separate floor, but we were doing every day what you were getting treated with. There was this weird level of like, I did have the expertise piece, but then in some people's minds, I think that should have made it easier on me or I don't know. That's really hard to pull apart. I had another coworker who had a family member going through a transplant or had gone through a transplant in the past, and she actually found her knowledge helpful. And I do know that my knowledge helped bring some clarity and peace in certain situations, even just of navigating the logistics of health care, which is a whole difficult situation. But for me, it was mostly a burden to see how bad people can end up feeling physically, mentally on a cancer floor and knowing that might be in your future. I want to jump in now to a little bit more of the beloved and hated social media we mentioned at the time. You had a Facebook and an Instagram. I feel like we talked early on about how you gained a bunch of followers after you got diagnosed, and it was literally like over 100 people. Like, you really jumped your follows. And at the time you were a teenager, you were kind of more into that than you are now. Like, you really did care about your feed or whatever the kids call it these days. So it's such a public yet private thing to go through cancer in today's world, especially as a young adult. And I just wondered how that felt. Did you feel resentful at the time? Like you were, like, thrust into this spotlight? Or were you kind of was there a weird level of, like, enjoyment? I don't know.
Ella 16:41
Yeah. Not gonna lie. I think in the moment, I was not mad about the boost in my following. And like you said, yes, I was very into, especially my Instagram. The aesthetic was very important to me. I mean, to the point where I would plan outfits. And it was all very seasonal. So in the fall, I was wearing fall colors only. And I've grown up a lot since that and just moved away from a lot of that toward a lot more authenticity in what I post. But, yeah, I think, honestly, in that moment, it felt like a good thing that could come from cancer. I think I saw that as kind of what you said, a platform. And I thought, okay, if people are showing up and are interested in my life and what I have to say, maybe that's I could use that - I don't want to say to my advantage, but if people are listening, you might as well share things.
Kayla 18:08
I definitely think it's interesting. Your age at the time probably affected that a lot. You are a fairly private person. I do remember, especially your first time through, you didn't post a lot about the cancer itself. It was a lot more of what we were seeing on Instagram at the time. What year was this? Like 2016. Like little inspirational quotes or whatever with a seasonal photo like you mentioned, so it wasn't necessarily cancer specific. And yet the people who knew what you were going through would tie the quote back to your experience and be like, oh, you're so encouraging, or praying for you. And I'm sure that was a little uplifting as you were sitting strapped to an IV for the 100th time. Yeah, but there's a dark side to that as well. I feel like you've had the experience of people that you barely know kind of like weirdly following along. Do you want to speak to that at all?
Ella 19:07
Yeah, as the people say, people came out of the woodwork, so to speak. There were people that either didn't know me at all personally and were just friends of friends, or people that I had gone to school with when I was in preschool who were now following me. Yeah, just a lot of really interesting things. And I think I was almost upset when people acted like they knew me more than they do, because in some ways it felt like they were claiming my tragedy. That sounds weird to say it that way, but I was like, you don't have any stakes in this. Like, you don't even know me.
Kayla 19:58
Yeah it's like they always say people can't look away from a bad car wreck. There is some element of that where the human nature in all of us is drawn to a good story with a problem that we're trying to fix and the drama. So I think when that leaks through in some comments, it's a little unsettling, for sure. And then one other thing I wanted to touch on is the Caring Blog. I know there's different brands out there, but there's these platforms that are blogs for people who are sick, basically. And I think mom primarily managed yours. Is that right?
Ella 20:42
Yeah, I think I would post on it every once in a great while, but she definitely did the majority of the posting.
Kayla 21:16
And I know that I found those to be helpful. When I'm not super close to someone going through something, but like, I'm interested in how they're doing or they're in my larger community and I might be part of some sort of communal gift or communal support, leave a meal or something, but we're not like intimate friends. It is really nice to kind of keep up with how they're doing. That is a burden to take on, to updating something like that. So often it is caregiver role, not the patient themselves, but it depends on the person. And for those who don't know, it's typically like a blog where you get an email when there's a new post. It's not truly like a social media feed, although you could always link back to it from social media. But that's kind of where you'd get the nitty gritty about like, oh, Ella's blood counts were this today or whatever. Not every time, but the more medical focused posts. Not just the hippie dippy quotes like you were saying on Instagram. 3s Which leads me to the physical details. Another part I remember about being the press secretary is like, at one point you were having a lot of GI issues, and it's like, people are like, oh, how is she doing? What can I pray for? What does she need? Like, they want to feed you or whatever. And it's like, do I tell them that she literally can't seem to leave the bathroom right now? Or that she really wishes she could use the bathroom right now? That kind of stuff where you're like, I don't need this broadcast. This is kind of like a sensitive subject, and it gets more sensitive than that. That's just one example I feel like I could share here. That gets interesting with ongoing what to share. Do you have any memories around that or like, advice for people going through it?
Ella 23:39
I think going back to what you said earlier about me being a primarily private person, I think every person is really different on this, and I just think it's your story to share. Whether you're going through a cancer diagnosis or a variety of other things, such as divorce, infertility, whatever journey that you're walking, I think it's up to you how much or how little you want to share about that story, and also in what ways you share. And so I think it's really important that you're really clear with the people in your life when you are experiencing something like that. Where I haven't pooped in six days, is that something that needs to be shared with a host of people? Probably not, but maybe your closest people might really want to know that. I think it's just being clear with the people in your life. This is something I really want to keep private, or I'm totally fine with you sharing this with so and so. I think every step along the way, it's important to assess, okay, how much do we want to share about this, and in what ways do we want to share?
Kayla
Yeah. And as someone close to you, on the flip side, I would say don't assume, just ask. I don't assume what you want shared, and hopefully I didn't do that as we went along. I'm sure there were some missteps along the way, but I think something you said a minute ago is really important. Everyone's really different, so some people might really enjoy - enjoy is a strong word… Feel comforted if they know that, say their prayer community is praying for them to have relief in their GI system. But some people would just want to hide under their covers of embarrassment if even one person outside their household found out about that. So we can't assume, even if you're close to someone, how they feel about those things, especially about their body and their bodily functions. And it's like, I think sometimes we get caught up in like we were mentioning earlier, the drama and the story. Something that I think I fell into is that I was struggling a lot with maintaining my normal life, being a supportive sister. And so sometimes I would lean into justifying my own lack of, say, performance at work or at school or in my marriage, like my attentiveness, by painting a really bad picture of how you were doing. And I never made things up, but I would maybe overshare sometimes as someone who prided themselves on being a good, reliable worker or student. Sometimes I think I wanted to share those, for lack of a better word, juicy details to kind of make people be like, do you understand how hard this is? And that's a danger that I've definitely fallen into. I don't remember ever crossing any serious lines, but that can be a difficult thing to navigate where especially farther down the road when you've had cancer for months or years, honestly, everyone else has moved on and then you're just like, as in your coworkers, people who aren't - they don't even maybe know your loved one with cancer. And sometimes you want to be like, my sister went to the ER last night with a high fever, so I barely got any sleep because I was up and I was worried, blah, blah, blah. And it's like, that's where sharing can get tricky. So. Clarity is key. Asking the person who's going through it what they want shared, trying not to protect your own pride like me by sharing too much. And yet as a supporter, caregiver person who is not experiencing it themselves but is experiencing quite a lot of pain around it. Have a couple people that you know and trust who can take pretty much everything. Obviously don't forego any boundaries that the person with cancer has set up, but like a spouse, and honestly not just a spouse, they can't hold everything for you. So a trusted friend or two who might want to hear or be willing and able to receive a little bit more information than the average listener would either, or want to pay attention to for that long, or would just turn into gossip. Because you can kind of tell if your listener is here for the story or is here for caring about you, and if you can just have somebody to describe in detail as much as you need to, how hard it's been and why, and then know that they're not going to spread that and again, making that clear. But it's important to have a couple of people like that even as a caregiver that you can sort of vent to.
Ella 28:02
Definitely. I think an idea for a future episode that we might have to talk more on is the whole concept of what to share and over sharing. I find even being five years out now, there's definitely still times in my day to day life where I have to assess is it worth sharing this detail about my story? Or what's my motivation for sharing this? Is it to connect with this person or is it to - I just have to ask myself that because I think sometimes I've definitely over shared and then either been really uncomfortable or shut down or I can feel in that moment that maybe it wasn't the right call to share. Yeah. So I think at some point we'll definitely have to talk more on this.
Kayla 28:58
Yeah. Or on the flip side, if you under share and then you find yourself maybe facing unrealistic expectations about your physical stamina or whatever. 3s I'm imagining for you now, thankfully, five years out, you're in a pretty good place. But I remember earlier on you were in remission, and that's not a magic wand. And sometimes you are hesitant to inform bosses or professors or whatever about asking for extensions or accommodations. That's what disability offices are there for. And so it's like, yeah, threading that needle of how much to share and with whom ongoing is difficult. Definitely oversharing. Also reminds me of people's reactions, which is an episode in and of itself because like you said, sometimes you share something and then you read the room and you're like, whoa, this social situation was not ready for a cancer story. Okay, so that's what we're going to get into on next week's episode. More about how to handle the response. So we've moved from results to the rollout to the response. And I think before we went through this, I never would have thought of all these facets of basically one piece of medical information. Yes, you have cancer. But it's a pretty multifaceted and multi-step situation and the next part can get pretty dicey and vary quite a bit the response that people have. Well, thanks everyone for listening. I hope you found something helpful in here. If nothing else, just the acknowledgment that - Dispensing, dispensing information. When you are a person going through a journey of any type, like Ella said, but particularly medical stuff or a loved one, it's really difficult and we see that and hold space for that. So don't be afraid to ask for help if you feel like you can't handle being the press secretary, especially if you are the person going through it yourself to share that metaphor with someone and designate them to be the press secretary. Ask if they can have a text chain or something, so that your most important people find out what they need to know, because none of us wants to be in this situation, but we definitely, since we're here, need to let people know what support we need and what boundaries we don't want crossed. So I hope something sparked for you today and we will see you next week.