Episode 32: When Everyone Forgets
Cancer is unpredictable in nature and can drag on for months or years. Sometimes original timelines get extended, sometimes cancer returns, sometimes recovery takes a lot longer than anticipated. If you’re still dealing with cancer but feel like your support network has faded into the background, this episode is for you.
SHOW NOTES
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Sources and Further Reading:
You can reach out to us here if you want to share a story, feedback, or potentially come on the show as a guest
We mentioned GoFundMe as a fundraising website people often use
Our American health care episode of the podcast was mentioned
Here is an email reminder template to send in professional settings when you need ongoing flexibility but it seems your boss/team has forgotten
Next week’s book report will be on “Marrow” by Elizabeth Lesser
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 0:28
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 back to the My Sister's Cancer podcast. I'm your co-host, Kayla Crum, here as always with my sister Ela Beckett. We wanted to tackle something that can often creep up, especially during a season of literal winter and or isolation of some sort, which is feeling forgotten or lonely during the long haul of being separated from people or recovering from an illness, particularly in the context of cancer. Before we jump in, I just wanted to remind you that we do have a website, mysisterscancer.co. We will link to a resource at some point during this show, we’ll mention an email template, and it's just a good reminder that there's actually a lot of resources on there. Links to other websites that have good cancer resources, suggestions for what to do to help somebody out who just got diagnosed, to help someone out who's going through treatment or for you yourself as you're going through those things. So we have a lot of resources over there on the My Sister’s Cancer website, and that's my mysisterscancer.co. So I just wanted to remind you of that as we enter this new year. If you've been following along with us, you know that we're in the season of isolation. For Ella this was physical isolation after a stem cell transplant, but can really apply to a lot of people going through cancer and a lot of people in other scenarios: chronic illness like MS or Parkinson's, chronic seasons of depression or rehabilitating after a surgery, or even just a season where you're doing your normal life stuff, but for some reason feel sort of socially isolated from friends or family. So I think that a lot of what we talk about in this episode will be helpful. Ella, I just wanted to start by asking you during your cancer experience - and I'm curious how the first shorter experience of cancer compared to your second, longer-winded season of cancer - did you feel forgotten at any point by friends or family, or is this more of a hypothetical discussion for you?
Ella 2:51
I think that there were definitely times where I felt somewhat forgotten about. I think especially during the second time around. I think one thing that we've kind of touched on in the past that especially rings true here, too, is, I think, for people who were very present and supportive during the first time around… It was almost like in their minds, not even consciously, but they were like, “We just did this. We just supported her.” Like the second time around it definitely felt like people more quickly forgot. And in some ways that was harder because I wanted to be like, but like, everybody knows how hard this was on me and our family the first time around. So it's like you expect people almost to support you even better, or in the ways that they maybe didn't the first time around. The - the hard truth of it is that, like, everybody else's lives keep barreling on ahead, right? And unfortunately, like I know personally in my own life, life gets busy and it can be so easy to forget about those people that are more isolated due to cancer or a variety of other reasons, or are just having like a longer-term struggle or season of suffering. So yeah, I guess that was a long answer to your question, but I definitely think there were moments where I felt forgotten about by the people in my life.
Kayla 4:25
Thanks for being honest about that. I agree, I felt similar… and this is not an episode to just complain and shame people. That's not our intention. Our intention is always to empathize and educate. So if you're feeling forgotten, we want you to know that you're not alone in that. It's normal, I think, especially the longer treatment goes on to feel forgotten because, like Ella said, people's lives just continue and they have work and school and things to do and their own families and their own stomach flus. And so it's not to shame anybody, but it's to empathize with those of us who've experienced this. And then we also will pivot in a little bit to advice for both the person who feels forgotten, and advice for those of us who might need some help remembering people in our lives. I agree that the second time was like, worse for us, for our family, and less shocking for friends and family. I think when an otherwise healthy young person like you, Ella, gets diagnosed, it's shocking, isn't it? I mean, it's shocking to your young friends. It's shocking to your elderly grandparents. No one thinks a young, healthy teenage girl would get cancer. Like we all know it's true in some vague sense, but it's earth-shattering news and people really can rally and like, support you. And it's just a fact that it's less shocking when you relapse. Not because anyone is mean or doesn't care, it's just to your literal human brain, the information is not as new and world-flipping, right. And so that does something in our brains and our hearts, if you want to call it that, that shock factor is gone. So the impetus to then jump into action is also lessened the second time. I also think people often experience this after a death. We experienced our maternal grandparents die six weeks apart from each other. And so, same thing. I felt more support when the first grandparent died and then six weeks later when the second one died, again: “Oh, Kayla's grandparent died. Your brain is like, didn't we just hear that? Didn't we just go to the funeral? Didn't we just send a card?” And it's just like not conscious, but that action feeling or pathway in your brain just isn't as activated when the information isn't new. This is why we are all obsessed with like, clickbait and constantly scrolling for new stuff online, right? Our brains are wired to seek out new and interesting information. So when something isn't new or you just did this, you're just not going to react as much and you're not going to remember it as much. It's really a biological reality, which is why later we're going to talk about ways to fight against that if you want to support somebody. But I just didn't want anyone to hear us saying, “We were forgotten. Everyone's the worst.” That's not the point. And it's unfortunately a fact of life that the longer something goes on or the more repetitive something is, the less likely we are to act on it. That being said, it's really hard when people kind of forget and move on with their lives. Cancer treatment can take months or years. Some people are never truly better. They're just kind of always in limbo between seasons of treatment. But it's never really gone. And so I think that it's really hard to remember people for literal years. Listen, I know I'm guilty of this. Like I have people in my life who have chronic illnesses that are never going away. We talked about that I think before, at least your cancer had like an endpoint. And there I said those words “at least,” which I discourage everyone from saying. But since it's about us, I'm saying I can now see retrospectively that it was reassuring to have a goal of making you cancer free. Some people get diseases like MS that don't have any endpoint. The endpoint is death someday, and it's only going to get worse. And that just breaks my heart. And I don't think we do a good enough job of helping or supporting those people and their family members either. A lot of you might relate to this even in a non-cancer context.
Ella 9:00
Yeah, I think a lot of what you just said was so well said, and I just want to echo all of it. But when you were talking I started thinking too, you were talking about like the longevity piece of it and I think one point that I wanted to make sure to make is that I think - and again, I think we've said similar refrains before - but when we got toward the end of it or post-treatment, right. I think that's when people really start to forget. It's like, oh my gosh, Ella is cancer free. She's doing so much better. Everybody kind of moves on in their brains. And honestly, in many ways that was one of the hardest seasons for our family, right? Was, okay, I'm done with treatment. I'm, quote, cancer free, but our life looks nothing like it looked before. I'm a completely different person. We're all completely different people. Like in many ways, the post-treatment side is when you really need the people checking in and like seeing how they can support you through that. But everybody was all like, confetti, let's get on with life, which is - we were that way too, right? That's understandable to want to carry on as we were, but it's like that's just not the reality of it. And the fact that, yeah, you can struggle for years and years and years, even after you're cancer-free. I think that's when it's really easy to feel forgotten about too, is like if you're silently struggling and working through really a lot of the trauma and the mental health aspects of everything as after effects. I think that is a season too, when it's really easy to feel like people just kind of forget, or maybe not even forget. Maybe they just don't realize that you're struggling and that you might need some extra support too.
Kayla 10:52
Mmm, yeah. That brings me to a poem I wrote called “People Forget,” which kind of touches on the fact that they don't realize. So I'll read that a minute and then share some reflections. And like I mentioned at the beginning of the episode, this is on our website as well.
People forget
They simply forget
They run out of steam
You run out of texts
The meals
They stop coming
Others’ lives
Keep on humming
It’s been way too long
For something to be wrong
By now you should’ve mastered
Your current life disaster
No one tries to be mean
But modern life’s a machine
Obligations fill up
You pour from an empty cup
People forget
They simply forget
But this doesn’t mean
You must remain unseen
You have a choice
To use your voice
I know you’re averse
But not doing it’s worse
So remind your friends
You can’t continue to pretend
You need a listening ear
To quench all the tears
The true friends will stay
The others fade away
But take heart, don’t fret
That part you can forget.
So that last line is a little bit tongue in cheek. I know that it's not easy to just forget the people that let you down, but I think it gets to the point that you do have some agency in this situation, especially with your closest people, to let them know that you're feeling forgotten or you're feeling like you need some more support. Because I certainly didn't realize, even after our first experience with your cancer, we blindly thought we'd be great after you were declared cancer free. And we could, like, go back to normal. And we've talked about that before, and this is why I pulled out isolation as a season on this cancer journey. You know, diagnosis, treatment, isolation, survivorship, even if you don't have a transplant. I really think that there is a winter season in there, an isolation season where you're trying to reorient and like you said, deal with the mental health effects and maybe you're physically reintegrating, but you feel very isolated mentally from the world. And, um, we've talked about that feeling. Some people just might not know. We didn't know before that actually, you might need more support, at least from a listening ear standpoint. And during that just post-treatment season, right, when people can't give you concrete help, like driving you to chemo or sending you a blanket, you know, like it's harder because you're asking the most of people, which is their time usually. Right? That's their most precious commodity. But a lot of times you need more support during this isolation season. So Ella, that leads me to ask you. What would you recommend people do? I mean, in my poem, I encouraged the forgotten to speak up and use their voice, and I was including myself in that. Like I could have been better about saying to my friends or even my husband or, you know, closer family members like, “Hey, this isn't over. Like, I'm still feeling really out of sorts.” What advice do you have for people, particularly the person going through some sort of physical isolation? What advice do you have for them?
Ella 14:15
Well, I think the first thing I want to say, and I think you said this earlier on this episode and I really appreciated you making the point, is that you might feel like you are entirely alone, but you're never actually alone, right? Like there are people in this world, in your life that care about you and love you. And even if they're not showing it in the best way or they're not reaching you like you are never actually alone. Um, I just want that to be like the first truth. But secondly, I think it's really important to actually take the time and put in the energy to acknowledge what you're feeling. I think one of my coping mechanisms, especially in this season of isolation, was just to not feel things. Like I really tried to just not let myself, like, sink into the full gravity of my feelings. And I think some of that was just like a self-protective measure, right? Because a lot of those feelings were extremely hard and extremely negative. And so I think I just kind of tried to hover on the surface of, of what the heck I was feeling. But I do think it's important to allow yourself to feel what you're feeling, and then also to acknowledge that and maybe even name those feelings. For some people, that might mean, like, writing down how you're feeling. I do think journaling was a helpful tool for me, um, to even try to put some words to what I was feeling, even if it was a difficult process. But I do think that's an important first step is actually sorting through what it is that you're feeling in that season, and maybe why, to write, like, if you start to kind of get to the root of like, okay, here's the things, here's how I'm currently feeling in this season. What are some of the contributing factors? I think that can be really practical because it can help you kind of sort through, okay, what kinds of things might actually help me right now, right. Like, what do I need in this moment? What might make me feel better in this season? So I guess that would be the first thing that I would say. I think another important thing too, is to remember that like at different times in your life, you know, maybe acknowledging the hard truth, that you might be the one forgetting about other people. Because I think really what that does is it allows you to feel a lot more grace for the people in your life. Um, this is something that I found really helpful is acknowledging that, you know, there are different seasons where I - my life was barreling full steam ahead, right? And there were people all around me that were silently struggling through something. And maybe I checked in once or twice, but was I - was I really there for the long haul? Was I really providing them the support that they needed? I think that really just helped me get to a space of more grace and acknowledgement that hopefully people are doing what they can and what they have available to them, but I do want to just say too, that that's not to just completely dismiss your feelings. I think it's important to be honest, especially with the people closest in your life. Like you were saying, Kayla, “Hey, I am really needing more support. Hey, I am really feeling pretty lonely,” and kind of being bold enough to ask for the things that you need to.
Kayla 17:48
I love that advice. It probably is tricky, because we're constantly saying seemingly contradictory things, right? But that's I think just the reality of life, is two things are true and we have to hold things in tension. So acknowledge your feelings and speak your needs with a healthy dose of grace on the side for the people around you. It's a difficult, much more difficult task to achieve than to just say on this podcast. So we acknowledge that it's not easy, but I do think it's ultimately for the best on the side of somebody who has been a supporter. I just want to say there's no shame in using the tools around you to help yourself remember people. As simple as a reminder in your phone, I've done this for death anniversaries. I have certain people's deaths as a reminder in my phone so that on that day I can text or call that person who is going to be remembering that loved one. You could even set it, you know, for a week early so that you can mail a card if that's more your style, or if you think that might mean more to that person. I have some reminders more frequently. Uh, every other week, every week, once a month, to text certain people in my life that I know I want to make a priority to stay in touch with, but that in my own human error, I just won’t if I don't have that mental trigger, especially if I never really see them in my day to day life. Which when that person is in a season of isolation, right, you're not going to. They're probably not going to be posting cute pics on social media if they're in a season of isolation. I mean, maybe, but like, they're not traveling the world or like going out with friends if they're in some sort of recovery or isolation season. I'm just saying your brain isn't going to be triggered to remember them. And I get it. You have your own life and your own struggles. We all - none of us, you know, has an easy, uh, path. So there's no shame in using the tools like phone reminders to care for people. Now, I don't necessarily lead with that. You know, if someone, like, asks me about it, I'm honest. But I'm not always like, hey, my phone reminded me that blah blah blah. I think that that's not really the point. There might be an occasional person who thinks that if you have to use a tool like that, then it's fake or like, not as valuable. I personally don't think that. I think that the act of creating the reminder and acting on the reminder means you care. And some people are just better at remembering things than others. And so. If you need, like, reminder tools, I don't see any shame in that. Let us know, I guess if you feel differently. I'm curious about that. There's a lot to keep track of, and I think that you're showing you care by putting in the effort, because we just are fallible and you just can't remember everything, right? Like, that's why we write people's birthdays down on calendars or whatever. I don't think anyone would say, like, “I can't believe you had to write down my birthday to remember to get me a gift.” Like, right? So, like, let's erase the shame there. I also want to say it's never too late. I think there's often, especially around deaths, but I think it applies in other scenarios - sometimes you hear of an illness or a death and you mean to send a card or give a call, and then like two months go by and you're like, “Oh my gosh, I never did that.” I think it's still a great time to do that. A lot of times a month or two after a significant event, that's when people start to feel forgotten. And so your card or call at that time might actually be way more meaningful than if you had remembered the first week you heard about it. So it's never too late to do that. Going along with that, I think this is actually also a good time to say, “How can I continue to support you right now?” Because earlier we warned against saying like, “Let me know what I can do,” because that's a little overwhelming to someone who just got a cancer diagnosis or who's just trying to get to chemo and their appointments every week. I think that this question is more appropriate in this isolation season, where, you know, if someone is not in that super busy, overwhelming diagnosis or treatment phase anymore, but you know that… You know, they're still processing things, their body’s still recovering. So I think that it's fair at this point to say, “How can I best support you now?” And you can still say, like, “Hey, would meals still be helpful? Or is there a different way? Or, you know, do you still need rides anywhere? Or is there a better way I can support you?” You know, they might just be like, “Honestly, just a phone call once in a while would be great.” Instead of the concrete support you used to give. That being said, I think one concrete support that matters during this phase if it's available to you is financial support. A lot of times we see like GoFundMe for people's cancer treatment because we live in the United States where insurance is not great and not guaranteed. And we've talked about that a lot. You can look up our episode on American health care. I won't get into it. But sometimes, as months or years go by, people who are trying to just keep up with, like their medical bills, or maybe have had to quit a job to get all their treatment, their regular expenses are probably getting harder to meet. So mortgage, rent, utilities, like if you find yourself in a position where money is something that you know, you maybe set a certain amount aside to give away to people. Or, you know, maybe you have more money than time, like some people have that. This is a great time to give, you know, a financial gift because as time stretches on during cancer or other illnesses, regular life expenses can get tricky.
Ella 24:10
Thanks for sharing your perspective too. I think what you were saying earlier about two things being true. I think that's right. I do think some of what we're saying, right, might seem somewhat contradictory, but I think at the end of the day, some of that is because we're also offering two different perspectives, right? We’re the person who was the cancer patient and was struggling in different ways, and a person who was a supporter and also struggling in different ways. So I think our two perspectives also make it so that at times there's two different truths, too. If you're still listening along with us, thanks so much for hanging with us. Next week, we are excited to be talking about our book for this season, which is the book “Marrow.” It's a sister story about a bone marrow transplant, and I'm really looking forward to talking with you about it, Kayla. So thank you so much for listening and we will look forward to talking to you then.