Episode 49: Survivorship Resource Roundup

Written By Kayla Crum

Today’s podcast episode is packed full of resource recommendations for the survivorship season. As we prepare to take a break from producing new episodes, we wanted to leave you with ideas for how you can continue to process your cancer experience.

SHOW NOTES

Sources and Further Reading:

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.  

—-------------------

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 Ella Beckett. We are nearing the end of our year-long podcast journey. This is our second to last episode. For those of you who've been listening along, you know that we are in the spring season of survivorship. So we've moved through summer and diagnosis, autumn and treatment, winter and isolation. And now we're at spring and survivorship. And those metaphors have been helpful along the way. For our second to last episode, we wanted to kind of do a roundup of a lot of resources we've mentioned over all those seasons, with a focus on resources, groups, ideas for continuing to move forward in your path after cancer, even though cancer doesn't really feel like it's ever over, but how you can kind of integrate your experience and move on. So we're going to do a resource roundup episode for you today. We'll kind of just go rapid fire. Ella, do you want to start by talking about… the biggest one that comes to mind for me from your early days is your support group, for lack of a better term. I know some people kind of cringe at that, but do you want to tell us a little bit about that?

 

Ella 1:59

 Absolutely. And I'm glad you said that because I was one of those people that cringed at that. I remember very clearly when my social worker first told me about this cancer support group, for lack of a better term, and I kind of rolled my eyes and was like, I don't need that, I am fine, everything's fine. Well, in fact, I did need it. I just didn't necessarily acknowledge that truth in that moment. And I think that is an important point, too, is that, you know, it might take you some time to be ready to go to a support group or to connect with other survivors. You know, I think when you're in the thick of cancer treatment, it can be really hard to even think about anything new entering the picture. Um, so I think survivorship is the perfect time to—there's not a perfect time. I think there's a different time for everyone, but I think survivorship is an important time to get connected with other survivors, because I think, as we've said before, the cancer experience and specifically moving into survivorship can feel very isolating and lonely. And I think it's super important to get connected with people who understand very clearly what you've been through because they've also been through a similar experience. So I would encourage, even if you are not the cancer survivor yourself, but you're a loved one of a cancer survivor, there are groups out there for you too. One organization that I know that we've mentioned that comes to mind first for me is Gilda's Club. I know they have support groups specifically for loved ones or caregivers, and I just cannot stress enough how much getting plugged in to a cancer support group was really helpful for me, and made me feel seen and understood and supported in ways that I really don't think I would have been if I didn't have those connections. 


Kayla 4:03

Yeah and for you, I mean, support groups are organized around different themes, right? So I know that some of them are any age adult who is a caregiver/loved one. Some of them are specifically like spouses of people who died of breast cancer. Like it can get really specific. And yours was an adolescent/young adult, right? And what was the parameters on that? The age parameters?

 

Ella 4:29

 So, 18 to 26. But that was pretty fluid, as some of our members were older than that even when they joined. And I will say the group that I was a part of actually wasn't specific to cancer. It was just, uh, complex medical diagnoses that impact your immune system. So. You know, I think, like you just said, if you're looking for that more specific group, I think those are out there. Mine was a little bit more general in that we were all immunocompromised, but it wasn't all cancer diagnoses.

 

Kayla 5:04

 Mhm. Yeah, I forgot that. Thanks for pointing that out. I do think that although our whole podcast has focused on cancer, there are a lot of similar chronic, terminal-type illnesses that I can see where that could still be like a supportive network, even if it's not just cancer. I know that for me, part of the reason I started this whole podcast and everything was because I couldn't find a sibling-specific support group, and it just felt like, again, in that adolescent young adult age group, college and just after college, I felt like I wanted that. You might have one in your community, wherever you're listening from, for siblings, which would be super cool, and I'd love to hear about it if you do, but I could have expanded my horizons a little bit and gone to one of those, like, family support groups or whatever, and that probably would have benefited me. I haven't actually participated in, like, a traditional support group in person with other people who've gone through it type of thing. We'll get into some of the other things that I found helpful later, but I'm curious what that would have been like if there had been a sibling one or if I had opened my horizons a little bit. So Gilda's Club is a great place like Ella said. We'll link to that in the show notes. What comes to mind after thinking about group support is individual support in the form of counseling and mental health support. So we did a whole episode called “The Winter Blues,” which we'll link back to, and that has a lot of good resources for therapy, different types of therapists. You know, do I have anxiety? Do I have depression? And I know for me that was probably like my biggest coping tool, because it has equipped me with so many tools that now I just use in my day to day life. Going through your cancer experience alongside you gave me symptoms of like hypervigilance and anxiety that I just couldn't get rid of even years later. And so I really encourage anyone listening who is in a survivorship season—I know it can be easy in your head to say, like, I should be over it by now, or the danger’s passed, like, why am I still feeling this way? Um, right? Because you're supposed to just be, like, happy after you're in remission or you're cured or your loved one is. And for me, I actually felt like once we got out of that intense treatment and isolation phase, that I really started dealing with the mental health stuff. So as we've said many times, counseling or therapy is another great resource.

 

Ella 7:47

 Yeah, and going along similar lines of the more individualized support or coping mechanisms, Kayla, I know you've mentioned before on the podcast that you've really found journaling and writing to be a really helpful tool.

 

Kayla 8:06

 Yeah. So before we ever had the idea for this podcast, I was just like writing down a lot of my feelings, poems and essays, just kind of when I had some moments at the end of my day. Often I'd write them in my head, like walking to my car after work. And for me, reading has always been my favorite hobby and writing has always just come naturally to me. And so journaling and then writing essays and poems was a really helpful way to get out of my body. Things that I maybe felt like I couldn't, at least at that time, express to anybody. You know, you don't even have to keep it necessarily, if you feel like what you're writing is too, too much, or like angry feelings or jealous feelings or things that confuse you can, you know, delete it, physically write it down and then shred it. Burn it; like any of those options are available. I now have turned that around and lead a writing group at our local Gilda's Club, and I often encourage people there—I provide a prompt every month, and people can write whatever they want, but it's just an idea. And some of it is like, you know, write a letter to someone who's passed away and like, don't be afraid to say, like, here's what I miss. And like, here's what I'm still mad at you about and things like that, or I wish you had handled this better, that kind of thing. So especially if you're a loved one, um, who has survived someone who passed from cancer or from something else. I think writing to that person can also be really therapeutic. So yeah, that's been big for me. I know you journaled, Ella, throughout a little bit off and on your cancer experience. Have you done that in survivorship or not as much?

 

Ella 10:01

 Definitely not as much I think, which is really interesting to me because like I was just saying earlier on this podcast, like when you're in the thick of it, it feels like you just don't even have the capacity or bandwidth, you know, for a lot of extra things. So it's interesting to me that I used that as a tool in the midst of everything I was going through. But then kind of as I moved into survivorship, I haven't utilized it as much. But I will say I journal every so often, and I still to this day just find it so helpful. And I really like what you were saying about, just like brain dump off the page, right? Like, I think people get intimidated by writing sometimes because they think it has to be really beautiful or poetic like your writing, Kayla, is, and I just think it's accessible to everyone, like just getting your thoughts down on the page, like there is something so tangible and therapeutic about that. So I definitely recommend it too.

 

Kayla 11:04

 Yeah. And if a blank page intimidates you there's all kinds of guided journals out there. Um, I like this one journal called “The Next Right Thing” by Emily P Freeman. She wrote a book to go along with it, but it's sort of just a way… It's like a monthly sort of journal that you turn to every so often through your month. And it's mostly like lists, which I think is sometimes easier for people than paragraph-form writing. So it'll be like—there is a gratitude list, which sometimes I've had times in my life where I'm like, eye roll, like I don't want to do a gratitude list, but there's other sections, like one of them is like, “these are the days dot, dot, dot.” And then it's just a list and you can be like, these are the days of snow, of feeling like I'm stuck, like however you want to interpret that. And so sometimes those types of guided journals can be helpful, too, if you're the type who is like, I can't just sit down and make words appear on the page. A related resource is reading. I have a book list available on our website. It's actually under the Winter/Isolation Resources season, but I'll link to it in our show notes for this episode. And it's just a book list that I've accumulated of cancer-related books, cancer-adjacent books, both fictional and non-fiction. We've covered a couple of these in like a book report form on this podcast, and I'll link back to those episodes as well. Reading has always been like a coping mechanism, no matter what I'm going through, and I like hearing how other people deal with things, and it just helps me have a different or a better perspective; sometimes get out of my own head and honestly just realize this happens to other people because sometimes it feels like it's just you. Did you, Ella, I feel like we've talked about this before, but for me, I was reading like during and throughout your cancer experience. And I feel like for you, you almost recently tiptoed into reading this stuff. Is that right?

 

Ella 13:07

 Yeah, I definitely think I used reading as an escape mechanism through my cancer, and I also am surprised. I don't think I read as much as I like would now, if that makes sense. Like, I think if I were in that situation now in my life, I would be reading all the books. Like I don't have vivid memories of like devouring books, even though I had so much time.

 

Kayla 13:39

 That's okay though. I mean, you don't have to.

 

Ella 13:42

 Yeah. And I think, you know, of course, there's days where even that was, like, mentally taxing. Like, I think reading can be a really good escape, but when it feels like something else to do or it just feels, yeah, mentally draining, then I just wouldn't. And that's okay too.

 

Kayla 14:00

 Mhm. Yeah.

 

Ella 14:02

 I definitely wasn't reading cancer literature. I was reading a whole lot of fiction and anything else that was a bit of an escape.

 

Kayla 14:14

 Well, that's a good point, because not all the resources we’re recommending are going to be a good fit for everybody, or not a good fit for you right now. Sometimes things evolve over time, even like two or three, four, ten years into your survivorship. Like you might find different things to be helpful. Um, and there's no shame in using reading as an escape either. I think that even though I like to read and find solace in reading about like, hard things like cancer, I always have to then have like a palate cleanser afterwards of like a, like a murder mystery or a rom com or something to kind of chase it down, so to speak. So one author I want to highlight before we move on from the book conversation is Kate Bowler. We've talked about her multiple times before. She is a colon cancer survivor. She has the podcast “Everything Happens,” and that title comes from her book “Everything Happens for a Reason and Other Lies I've Loved.” We did an episode on that that I'll link back to, and she's definitely expanded in her podcast beyond the world of cancer and just has, like, really rich, meaningful conversations with people from all backgrounds, walks of life, like everything from a funeral director here in Michigan, where we live, to the Bishop of Canterbury, also Katie Couric. So she just like; anyone or any type of background you can think of, she'll have it on the podcast and talk about things like grief and death and, you know, hard things. But she just, like, has this knack for talking about it all so well. There's laughter in each episode and there's like choked up moments in each episode. Um, and I just really recommend, especially as we're getting ready to wrap up this podcast for all of you for now, at least. Um, if you're looking for something else, “Everything Happens” with Kate Bowler is a great podcast that's in a similar vein. 

 

Ella 16:24

 Well, I think this podcast for us has been such an important survivorship resource for the two of us. You know, I think as we've said before, there's a lot of conversations that we've had on the mic that we maybe haven't even had off the mic that I think were really important conversations to have. And I think more generally speaking, like when you're ready to talk about your cancer experience, whether that's to a therapist or to your loved ones, like I think just talking about it is a really helpful thing too, because I think like what you were saying earlier too, is that it can feel very isolating and you can feel super alone. But I think the more that you are able to talk about it with, you know, different people in your life and trained mental health professionals, I think that really helps you process it all and move forward too. 


Kayla 17:27

Yeah. And I think that this podcast, like you said, has been good for us because it just set aside this time where we knew we were going to talk about cancer. So like, not everyone has to run out and make a podcast necessarily. But you can, like, with whoever's in your life that went through it with you, say like, “Hey, can we get coffee? And like specifically unpack some of that cancer stuff?” Like, I know we've moved on, but it's all just still a blur, and I really want to process some of that with you. You know, obviously you want to pick your people that you're doing this with well, but I think setting aside designated time can be helpful because life just marches on, right? And like otherwise you won't necessarily ever talk about this stuff because, like, it's been six years since Ella had her transplant, and we've had lots of new conversations over this podcast that we hadn't addressed in half a decade. So, yeah, I really recommend that.

 

Ella 18:29

 I think another thing that I wanted to make sure to mention on this episode in particular is that when you are moving forward into the season of survivorship and you're getting back to school or to work or those settings like you were saying, Kayla, life just marches on. And it can be so startling to try and just, like, pick up where you left off, because as we've said 100 times, that's just not an option available to you, unfortunately. So I think just really leaning on supportive people in the spaces that you're in, whether that's a disabilities coordinator at college, like we've mentioned, whether that's a school counselor or school social worker at a younger school age kid level. And then as an adult, like in the workplace, being super communicative with your supervisor and whoever else, um, HR or anything like that to just get accommodations in place if necessary and to make sure that that transition is as smooth as possible.

 

Kayla 19:39

 Yeah. And I think that the key of what you just said is that this applies during survivorship. Like I think everyone would say, “Of course, of course,” like, when you're going through treatment, to any sort of accommodations at school or work, for some reason, we tell ourselves that now that I've gotten the stamp of remission or cure, I shouldn't need any help anymore. And that's just not true. It's a long road, and you might have lifelong accommodations that are necessary, either from a physical or mental health standpoint. And that's okay. Like there are disabilities protections in place and they're often like, if you ever have read one of those forms or whatever, cancer’s on the list, and it's like you are always going to be a cancer survivor, even if it never comes back, you know, actively and that's valid. I think the last thing I want to highlight is volunteering or giving back in the cancer community. This one I think you have to be careful with and take your time. I'm certainly not suggesting that six months after your last chemo treatment, you go volunteer at some sort of fundraiser. I mean, if that works for you, that's great. But I think this is something that as time goes on, even as years go by, you can find meaning and purpose in turning around and using your experience to help others going through something similar. So that can look a bunch of different ways. That could just mean you privately giving some money and like that's what you do. That could mean you are volunteering, you know, at your local hospital and sitting with people getting chemo. That could mean you're doing more kind of fun events like fundraisers where you help with a gala or like a kid 5K or, you know, there are endless ways to get involved. And I think that if you approach that when you're ready and with some deep reflection, it can be a really rewarding way to give back. Has that been a part of your experience, Ella? 


Ella 21:59

Absolutely. Yeah. But I really appreciate what you said at the end there. I think approaching it with reflection and with self-awareness too. I think it's really easy to feel pressure and to make meaning out of your experience and your story. And I think, you know, once you're a cancer survivor, it's like, whether spoken or unspoken, there are these pressures that you feel to like, give back and to be supportive of other people going through that. But in my personal experience, I have found so much meaning in being able to use my experience in ways that help other people. And I think just being aware of, yeah, making sure it's a good time to do that and also making sure that you're not necessarily centering your own story either. And so I think that can get a little tricky too, if, you know, giving back to give back. And you might know in your heart obviously why you're doing it, but I don't think you always necessarily have to sell your story as a part of it if that makes sense.

 

Kayla 23:24

 Yes. I think that's something that I struggled with. Well, first of all, I don't recommend making cancer your job immediately after you or a loved one has just done cancer. Because I became a cancer nurse less than a year after Ella's first remission from cancer. And then it turned out that the week I started that job, she actually relapsed. And I was not ready for that. And that's a whole other story. But even from a volunteering perspective, I'm glad that I did not attempt to lead this writing workshop until this past year, because even just two or three years ago, I think I would have done what you mentioned, which is like centering my own story. And again, it can be really helpful and healing to share your story for sure. But there is a flavor of that that becomes dragging other people down with you or like you're actually seeking help, but you're doing it under the guise of helping others, and you haven't admitted to yourself that you still need help and support. So I'm not saying you reach this like, level where you don't need any more support. It's always going to be reciprocal, I think, in these situations. But you have to have worked through your stuff to a point where you can handle hearing someone tell their story and maybe even frame it completely opposite, or almost offensive, to how you would frame it and not have all your emotions, like, rise right up to the surface, you know? And that takes just time and distance and practice. So volunteering is a great idea. Probably multiple years into your journey and with some careful thought. 

 

Ella 25:21

Yeah, I do think it's really rewarding though. I think it's worth it for sure. Well, that brings us to the end of this episode. Thank you so much to those of you who so faithfully listened to our podcasts. Next week we will be saying farewell to the podcast by taking a look back on everything that we've done over the last year, everything we've talked through together. But until then, we hope that you have the best week available to you.

Kayla Crum
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Episode 50: Farewell for Now
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Episode 48: Guest Episode with our Parents