[00:00:00] Speaker A: Foreign.
[00:00:08] Speaker B: My name is Nancy Farrow, also known as Mama Lou, and I'm the founder of Epic Experience.
Epic Experience mission is to empower adult cancer survivors and thrivers to live beyond cancer.
I hope that as you listen to campfires of Hope living beyond cancer, you find hope, healing and empowerment.
Through stories and education, we aim to guide those impacted by cancer and more importantly, offer love and support to anyone out there who needs it.
This is beyond cancer.
[00:01:13] Speaker A: Hello, everyone. This is Gail, AKA Sunshine. Today we have two guests joining us around the campfire. We have Jenna Jones and Eileen Van Cleave. Thank you both so much for joining us. And if I'm not mistaken, you're both in California, but you're from different parts of California, is that correct?
We have Southern and northern.
And Eileen is in northern. Yep. All right, well, let's start. We have a special episode today. I'm not going to give away the theme yet, so let's just start by having you both briefly introduce yourself.
And I always like to ask for one fun fact.
So Jana, why don't you go first?
[00:01:52] Speaker B: Hi, I'm Jana. Thank you so much for having me on today.
My.
I also have an alias. It's Starshine.
And I earned that name going to an Epic experience camp February of 24.
And it's because I'm a melanoma skin cancer survivor.
But the, the good things are I'm a mother of three adult children. I have a wonderful, supportive husband who's gonna love the topic today.
[00:02:25] Speaker A: And I love that foreshadowing.
[00:02:28] Speaker B: Yeah, right. And I am.
Fun fact would be that I have a Savannah Cat, an F2 hybrid wild cat.
[00:02:42] Speaker A: Very cool, Eileen.
[00:02:45] Speaker C: Okay. I would say too that I am fortunate to have a wonderful husband that I met when I was in elementary school. We have been married and life partners for over almost 38 years.
[00:02:59] Speaker A: Wow.
[00:03:00] Speaker C: Other than that, so an excellent support person and truly the love of my life. We have one son that we share, one adult son who has been one of my biggest life teachers and a wonderful support family. You know, I'm the regular run of the mill daughter, sister, niece, you know, all of those things. And then kind of closer, a closer view is, you know, I, I am a curious mind, an adventurer, a life learner, animal lover and a work in progress who happens to be an early survivor of stage 3B hormone positive, HER2 negative breast cancer. Still in active treatment and refuses to let it slow me down.
[00:03:44] Speaker A: Good for you.
[00:03:45] Speaker C: Yeah.
[00:03:46] Speaker A: Well, today we are going to talk about something called compassion fatigue. So, Eileen, I'm going To ask you, where did that term come from and what is the, quote, unquote, official definition?
[00:04:00] Speaker C: Okay, so from what I have learned, I work in healthcare. And so the learnings really came from that.
That set and that environment. And it came to be in about 1992 from a historian and then further defined by a researcher and a psychologist who described it as a state of exhaustion and dysfunction biologically, physiologically, and emotionally from prolonged exposure to compassion stress. So caregiver.
And it's been around as long as compassion has been around, just kind of the other side of that coin and not really labeled until the 90s.
So again, it was largely related to health care, and then it's spilling over into other industries and then into personal lives and home settings.
[00:04:54] Speaker A: Yeah. So you learned about it through work, basically through. In a. More. Okay, so, Jana, how did you learn about the term?
[00:05:03] Speaker B: Well, I was actually living my life.
It's been three years since my diagnosis, two years since my treatment ended. And with all of the things going on post treatment, all the adverse reactions that I've had and scans and repeats of tests and such, I just was living the. That I was living the compassion fatigue with my husband. And Eileen and I, we met in a group called Anti Cancer Lifestyle Program.
It was a program that taught us how to eat better, exercise, take care of our health, take care of our environment, and we've just stayed connected. And so I was on the zoom with our group complaining about, you know, my. I went to. I've been going to these scans, and my husband, he just doesn't seem like he wants to be there anymore. I'm just not getting comforted like I need anymore. And I. Eileen just spoke up and said, no, this is a thing. This is out there, and you're not alone.
[00:06:19] Speaker A: Did it help? Jan, I'm going to start with you with this. Did it help in that moment to have a label for this thing that you had been experiencing?
[00:06:27] Speaker B: Oh, my goodness, yes.
I was on that teetering board thinking, am I just making this up? You know, am I just being too needy? And that just confirmed that, no, this is actually a valid feeling that I'm having. And it's hard, you know, going through cancer, going through treatment, recovery, survival is challenging. It's just exhausting. And as a. As the survivor, but the caregiver, it's like there's a point where you just. You just don't want to hear it. It's hard. You can't help, you know, And. And my husband, after talking to him, he says that he Wants to be there. He's just exhausted. It's just really hard to get all caught up and then it's okay.
[00:07:15] Speaker A: Yeah.
[00:07:15] Speaker B: Because that does happen a lot. You go in for the scans and you get all worked up and then, no, there's no cancer there. We're okay. We can live.
[00:07:24] Speaker A: And you can breathe. Right.
Did and because you feel the exhaustion, were you able to understand his exhaustion?
Have a little empathy, I guess, for him at the same time where you're feeling it as well?
[00:07:43] Speaker B: Yeah. My first reaction was, what do you mean you're exhausted? I'm the one living with it.
True.
[00:07:49] Speaker A: Very true. That's why I hesitated to ask about empathy, because it's true. You're the one going through it.
[00:07:54] Speaker B: Yeah. But truthfully, the caregivers go through it just in a different fashion. Right, Exactly. So, yeah, no, it definitely.
After talking to Eileen, I went to my husband and I'm like, you know, we need to talk about this. I need a little bit more compassion. And if you don't want to come around to the appointments, I totally understand. If you want me to stop talking about these things for little bit, I understand, but I need to talk about it. I need some. Some outlet to stay sane and healthy myself. So, yeah, I'm lucky to have Eileen in my group and all of you at Epic also.
[00:08:37] Speaker A: Yeah, definitely.
Eileen, did it help you to have a label? Well, and. And let me say first, were you, like Jana, experiencing this thing, not having a name for it and then learning about it? Was that your experience as well?
[00:08:53] Speaker C: Yeah, I had known about it and had that knowledge somewhere filed in my brain.
And then.
And then I started noticing again.
About two years into the cancer journey, I started noticing my husband, who we've been each other's rocks for so long, kind of tapping out in different ways. And.
And that was just different. And so then I started flipping through my Rolodex. I'm like compassion fatigue because, you know, the. The love is solid. You know, it wasn't an issue or a question at all on that level, but I could just see that there was something different. And I wondered, you know, how depleted he was becoming, if you will. And so I kind of knit to compassion fatigue kind of along the same lines as, like the grieving process, where it's more fluid or very focused and it kind of cycles through is what I'm learning because I'm two years, nine months out right now. And so it's almost like that, that nine month interval that we've been having currently, where this started kind of showing up. And then not only for him, in my case, I began to feel it too.
And. And that was unusual for me.
A cancer diagnosis on the journey has been described to me as a severe blessing and a life in limbo. And both of those descriptions completely resonate with me and I feel are super accurate descriptions. And at times it's discouraging, like Jenna was saying, and depleting for certain.
Even with my glass half full, I test out as an altruistic person and I'm still kind of going through these sometimes what are new emotions for me. So, yeah, yeah. It's not only just the caregiver or the professional care, a healthcare provider. It's literally the person. It could be the person as well that's going through it.
[00:10:48] Speaker D: I hope you enjoy this episode of our Campfires of Hope podcast. Here at Epic Experience, we make it our goal to serve the cancer community through our collective programs such as this podcast, our week long adventure camps, regional programs across the country, and Thrive VR, a custom virtual reality experience benefiting patients in cancer centers. If you would like to be a part of our community of supporters, please go to epicexperience.org and click donate.
Thank you for listening to campfires of Stories of cancer with gratitude Wingman, also known as Colin Farrow, Executive director of Epic Experience.
Epic Experience is a registered 501c3 organization.
[00:11:33] Speaker A: I would have never thought of it that way. Having compassion fatigue almost for yourself. Right. I mean, that's an interesting.
[00:11:39] Speaker C: Yeah.
[00:11:40] Speaker A: Concept.
[00:11:41] Speaker B: I am sick and tired of it.
[00:11:43] Speaker A: Well, there's that too. Exactly.
[00:11:47] Speaker C: Like, sometimes it's just like I'm exhausting.
[00:11:49] Speaker A: Yeah, that is.
[00:11:52] Speaker C: Or at least my to do list is. Yeah, right.
[00:11:55] Speaker A: Well, exactly.
[00:11:56] Speaker C: Yeah.
[00:11:57] Speaker A: So given that official definition that you mentioned earlier, based on your personal experiences, I'm going to ask both of you this. Would you define compassion fatigue differently or would you change the. Would you give it some kind of nuance or anything like that? Eileen, go ahead.
[00:12:16] Speaker C: I would say that I wouldn't necessarily define it differently. I would just add to it to really include. Instead of being so kind of locked into those few words, I would give it a little bit more depth. And because I think people come with whatever it is their life experiences are and they show up differently and they have various capacity.
And so it's really kind of just laying out the diagnosis or I'm sorry, the definition, and then kind of peeling back the onion a little bit like who you are as an individual and where it's. Where it's. Where it's striking. Your core. And then. And then also I would give it the definition, but then also kind of the antidote. Like, then what do you do with that, with that label?
And so it's more of a complete. Like a complete set of what it is and what to do about it.
[00:13:13] Speaker A: Yeah. And we're going to get more into that in a minute, so I'm going to hold that thought. Jana, but how would you personally define compassion fatigue? Is it different from the definition Eileen gave us?
[00:13:27] Speaker B: It's the same. It is textbook. You know, that's what it is. And the name says it all. You know, I. I would just make it more simple that I'm just tired of being sick in a perspective for yourself and. And for others, they just. It's tiring. It's exhausting to love somebody so much and can't help them.
So I'm just glad that. That we actually have something to say. This is what's going on. And like you said, Eileen, to have, like, an anecdote for it.
[00:14:03] Speaker A: Yeah.
It sounds like for both of you, if I did my maths correctly, both of you is about two years out, maybe two. A little over two years out. Where you started noticing this, Jany, have you. Does that seem common among people you've talked to since. Since this has come on your radar? Does that seem about the. The same amount of time? I mean, I know there's no definite. It happens here, but would you say.
[00:14:30] Speaker B: That'S about right for me? Eileen's the first one that I talked to that's confirmed that she had similar feelings. And this is just that one group that I got to talk to. I have a couple other groups, but here's where lies. When you've been out of treatment for so long, you actually lose those core people. In the beginning, there's a lot of support, but then the further out you get, they don't. They're not necessarily there because you don't need them that much as they think. But for me, you know, I still need everybody and need to talk to everybody. But that's where the compassion fatigue begins. The further out you get.
[00:15:18] Speaker A: Yeah, definitely. And it sounds like from what you said too, Janet, it's in different ways. Like, you may not need the person in the same way, but as you said earlier, that's a matter of discussion. Right. Talking to your husband or whoever the person has happens to be.
Eileen, do you have anything to add to that in terms of how far out?
[00:15:38] Speaker C: Yeah, I think that for Jenna and I, we were kind of around the same timeline but looking at other people, I think cancer treatments in different areas have progressed so much that sometimes it's not a matter of, like, for me, I'm going to end active treatment in August and then I'll go on maintenance for the next several years. So that's me. Some people, their cancer journey and their treatments go on forever. That's what's supporting. And so I think people can show up in at any time. And that's why I say more fluid.
And so also one other thing is even within our group, some people are more reserved in their sharing and others are more parent. And so it's hard to really nail it down. Like, when does somebody show up? Because I think it depends on how, how transparent you're living your life and how vulnerable you're choosing to be, which can be, you know, hard. And we're all at, you know, different spectrums with that. So.
[00:16:37] Speaker B: Yeah.
[00:16:37] Speaker A: Well, it's interesting listening to you. I'm wondering if you have tips for the listener, like maybe somebody's not in touch with their feelings very well.
What signs or symptoms might they notice in themselves or others that might trigger, oh, maybe this is what's going on.
Is this compassion fatigue?
Either of you can go ahead and jump in on this one.
Eileen, go ahead.
[00:17:09] Speaker C: I think for me it was really, I became fixed on a. I like productivity and so I became fixed on to dos. Like I would just give myself more and more and more, regardless of how fatigued I was and how empty my tank was, I would just keep going, going, going and doing that. And then finally I realized, like, this is just not working. And I'm feeling this not only from the treatments and from the medications, but also because what I'm doing, I'm not, I'm not taking time for self care, which is so important to find your way not just out, but through, through it. And, and I don't think it's a one and done either. So it's really, you know, a work in progress to, you know, I show up for appointments. And so it's literally for me, calendaring my self care time and being committed to that time as I am to my doctor's appointments or what meetings or whatever it is that I have going on. And so, yeah, that's how it is for me.
[00:18:07] Speaker A: Yeah.
How do you cope with it? I want to ask first, how, like Jenna, you've noticed it in your husband.
How have you coped with that?
I mean, I know you talked to him, but what other things have you done?
[00:18:24] Speaker B: Well, initially, after hearing it I was already in a sensitive state. And so I said, well, then I'll pull back and I won't talk about it. And every time. How are you? Are you okay? I'm good. I'm fine.
[00:18:40] Speaker A: You know, the classic I'm fine.
[00:18:45] Speaker B: Yeah. And, And I even did it for myself.
You know, I, I took a step back and said, okay, I'm not gonna hyper focus on what's going on.
Yes, I've got a scam coming up. It's gonna be fine. Which is very challenging. But I definitely tried pulling back.
I needed to. Not because I needed to express myself, I needed to let those feelings out because I kind of think that was the drive for the fatigue in the first place. You know, you. You're going through the worry and the state and caring for each other and yourself, and it does get exhausting. But if you're not talking about your feelings behind it, if you're not emoting the process, you know, acknowledging that you're stressed out, then you're going to continue to be stressed out.
So that's. I, I shifted to that and I. And I talked to him about that and I said, okay, you don't have to come with me to the appointments, but I'm gonna need somebody that's gonna support me. And that's when I realized he told me, you. He loves me. He does want to go. He. He needs to go because he's going through this. It's just really hard.
But after talking about it, labeling it, it's all kind of a lot easier because it's out there.
[00:20:14] Speaker A: Yeah.
[00:20:15] Speaker B: Now we're just kind of keeping the communication open as we go through it.
[00:20:21] Speaker C: Yeah, I would. That just completely resonated with me too. And it made me think that when my husband and I talked about him kind of pulling back a little bit, what he boiled it down to was really not meaning to pull back, but really his doing so was a way to protect his heart and his mental well being in the face of this, like, relative uncertainty. Right. We're all kind of dancing in limbo.
And so he too wants to be there and is there and all of those things, but really just needed to shut down for a while. And so just like my scheduling, I am helping him schedule because he wants to be there for me. And I'm like, no, you this or that, yes or no kind of thing.
And so that he can open up his calendar a little bit to do some self care himself, which is. Which is hard for him to do.
[00:21:19] Speaker A: Yeah. Self care is not when you're in the midst of something like this. That's not always the top priority. Right. It's getting through the scan, it's finding out the test results, it's scheduling that next doctor's appointment. It's doing all those things that have to be done and we often forget those other, the other things that we need to do for the rest of our body, our mind, our emotions.
[00:21:45] Speaker C: Right.
[00:21:46] Speaker A: What would you guys want people listening to know about compassion fatigue?
Any advice that you have, any tips again for recognizing it in themselves or others?
Eileen, I'll start with you this time.
[00:22:03] Speaker C: I would say really just know that it's a thing and acknowledge it if, if it's happening or if you can tell that it's happening or somebody kind of acknowledges for you that, that they're seeing it and not take it personally and make a large investment in self care and that can five minutes here and there throughout the day and pretty soon you've taken care of yourself for a good straight, you know, half an hour collectively. So, and then also I would say share the load. So care especially my, my husband, likely Janice as well, you know, wants to be there and do everything and carry that weight for me, if you will. But other people want to do that too. And so it's really, then it was completely foreign, super uncomfortable for me to have to say, okay, Susie, you've been asking to do something. Might you do this or are you open to do that? And the response has been tremendous. Really. It, it takes that hopelessness out of people that, that feel like I, I, there's nothing I can do, you know, and, and it serves a real purpose and it's healing for everybody. I think. So, yeah, just, just checking in with others, sharing the knowledge and, and then really encouraging people to rest, repose and rejuvenate whenever you can.
[00:23:24] Speaker A: That is awesome, Janet.
[00:23:27] Speaker B: Yeah, that's, that's great.
I, I say forgive yourself.
[00:23:33] Speaker A: Yeah.
[00:23:34] Speaker B: For having those feelings.
Hopefully you can be aware that you, that's what's going on. It took me to talk to Eileen to figure this out. So hopefully you have someone as that's a sounding board that could, you know, help you become aware. But forgive your people.
You have to understand that that's just part of it and it happens and it's not going to last forever. I don't always have fatigue towards myself compassionately and neither does my husband.
But I love what Eileen said about opening the door to others to help.
I, I know my husband wants to be there all the time, but like she said, you Know, somebody else does. And. And I've done that with my.
I go in for infusions still for iron and magnesium and trying to treat these adverse side effects, but my sons come with me, and my daughter is going to be coming with me because I have to go in every month. And so my husband is going to get a break, and others are going to get to help and. And work on their compassion as well.
[00:24:45] Speaker A: So have you guys found that in this situation where you're asking other people that your husbands have been relieved, have they at all been.
Miffed isn't the right word, but upset that you're actually looking to someone else? Like, what has the response been? I'm curious.
Jenna.
[00:25:05] Speaker B: My husband is. Definitely.
Does not want to miss anything.
He definitely wants to be a part of everything. And, you know, he was there when I was going through treatment and my brain fog.
I needed help, lots of help. I needed extra set of ears and eyes. And, I mean, I still do, but he. He needs it for his sanity.
[00:25:27] Speaker A: Yeah.
[00:25:28] Speaker B: Truthfully, he is my person going through this with me 247 almost, you know, so, yeah, I. I don't think he's so happy, but he's just gonna have to, because it will help.
[00:25:43] Speaker A: Exactly. Eileen.
[00:25:45] Speaker B: At least they get a break, right?
Give me some good news.
[00:25:50] Speaker A: Enjoy it for both of us. Come on.
[00:25:52] Speaker B: Yeah.
[00:25:54] Speaker C: Yes. And it takes practice. Right. Because I think that I'm a caregiver. He's a caregiver. You know, it's just part of an innate part of you that you're having to kind of flip on its head sometimes. And so for him, I think that it has been helpful. It has lightened the load. But he does want to be there for everything, too. So we look at it like next month, I have a bone density scan. I'm like, what's the point of you being there? You know, it's just like, you know, that one of my friends could come with and enjoy that space, and that'll free you up, because we travel quite far for my treatments and scans and doctor's appointments, et cetera.
So that does give him a chunk of time. And it also fulfills the obligation to my friends who really want to do something and who I was not allowing to do anything at first. One of my friends actually told me, she said, you know how when I. When you hear that. That I'm needing a little extra help, you're always the first person to say, oh, I'll do that. I'll do that. And I said, yes. And she said, well, how does it make you feel? And I said, yes. And I said, awesome. And she said, and then when I ask you how I can help you and you say, no, how do you think that makes me feel? And I'm like, oh, gosh, you're such a good friend.
[00:27:07] Speaker B: So.
[00:27:08] Speaker A: Right.
[00:27:08] Speaker B: So.
[00:27:08] Speaker C: So let me. Let me do something about that through. Yeah.
[00:27:12] Speaker A: That is such good insight. Thank you.
I'm wondering if for both of you, if there's anything I haven't specifically asked you about that you would want to share with someone listening related to compassion fatigue, whether it's related to you or to another person.
Jana, let's go with you first.
[00:27:32] Speaker B: The only thing that comes to mind is have a supported, supportive community.
If you don't have one, get one.
Because I think this goes hand in hand with survivorship.
So if it didn't pop up yet, it might.
[00:27:47] Speaker A: Yeah, yeah.
Eileen.
[00:27:52] Speaker C: I would just add that for people to know that they're not alone, this experience creeps in to the best of people that are doing the work. And it's not a reflection on.
On your. Yourself in any negative light. And so just take a step back and feel good about all that you have done and all that you're still doing and wanting to do. And then at the same time, come up with a plan that allows you to decompress and get some me time on the books. I'm a huge proponent of that. Now. You know that we've started to practice that it is. It is really, really fulfilling for everyone and. And then just work. Re. Work towards restoring balance. And I think that the person that you're caring for will pick up on that unspoken, non. Verbal vibe. So it'll enrich everyone there.
[00:28:49] Speaker A: I love that, what both of you have said, this whole idea of normalizing it, forgiving yourself, realizing you're not alone in this, that this is a thing. Right. That people get tired when they're going through the treatments themselves and. And those who are going with you. So thank you both for. For putting a label on this and for. For sharing this.
So I have one more question. Very important.
Marshmallows over a campfire.
Slow and steady or flame and crispy. Jana?
[00:29:23] Speaker B: Oh, I'm slow and steady.
Definitely. And hey, I have a twist.
You do Lemon curd and sugar cookies.
[00:29:33] Speaker A: And you mean if you're making a. A some more, you use those as the. All right. That I have never heard of.
[00:29:41] Speaker B: I'm in meringue. It is mind blowing.
[00:29:45] Speaker A: Eileen, how about you?
[00:29:47] Speaker C: No, I like it in the fire and crispy Burn it up, baby. That's right.
[00:29:53] Speaker A: Thank you both so much, Jenna and Eileen, for joining me here today. I really appreciate your honesty for being vulnerable, for putting a name to this thing so that people aren't alone.
To everyone who's listening, until the next time we gather around the campfire, keep Living Beyond Cancer.
Thank you for listening to this episode of Campfires of Hope, Living Beyond Cancer. For more information about Epic Experience and our programs, or to donate, please visit our
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Family.
