Jennifer Van Syckle  0:00  
A diagnosis of cancer can leave you feeling confused, scared, angry, unsure where to go. And more words cannot even describe it. Our guest today is Becky Franks. Becky works for the Cancer Support Community of Montana. This can provide local help, guidance, insights, and so much more. You don't want to miss this episode.

Becky Franks  0:23  
And she said, You know, it's interesting how cancer is changing. And if you live in Montana, it's the fly or die state? Who? I know, I know. And I was like, what? Well, not anymore, my friends. Because in a lot because of the State Coalition, the State Coalition is so many dedicated people who come together and think about how do we improve cancer care? Where are the gaps in this state where there's such few population centers? How do we bring specialties to different parts of the state, and then support each other in that, to make sure we don't have to go to Washington, we don't have to go to Denver, we don't have to go to Minot, Minnesota to get our cancer care, we can get our cancer care right here at home. And from my perspective, with the psychosocial care, and the mental health of people with cancer, when you can get your treatment at home, you do better. When you've got your dog by your bed, your family around you, you can still go to work, you can still go out in your yard and pick your flowers, you do better? Absolutely. And what people don't understand is that the cancer experience is really long. This is not a shoulder surgery, you're in this for the long haul. So all these volunteers got together and made the Montana Cancer Coalition and have this made wonderful gains since its inception. I think we're now on to our third strategic plan. It's every five years and and we're making gains to improve the care all the way across. So there's seven main cancer centers across Montana. And then we're you know, there's a lot of infusion centers that help people get their treatment in their community. And, and there are also services for psychosocial support. So how do you find them, and one of the ways that we did as we made a map, so it's an interactive map that has all these fancy names, and I'm not going to remember, and you can find it on the state coalition's the Montana Cancer Coalition. So if you just query that in your Google, you'll be able to find the website, and then go to the resource maps. And that's one of the sources that we use here at Cancer Support Community when someone calls and they live in Shelby, or they live in, in Plentywood, or whatever, wherever they live in Montana, what's available to them there. You can go on the map, and you just hover over it. And then you can see a lot of services that are available. It's not 100%, because that's really hard to get 100%. But it's darn close.

Jennifer Van Syckle  3:12  
That's nice. Definitely. And then Becky, I'm wondering, I know, a lot of times there's a bell that people ring when they're considered cancer free after they've gone through those years and months, but I could see where that would be really very weighing you'd be carrying a big? I don't know, I imagine it like a backpack, like I'm a cancer survivor. But oh, my gosh, I can't put this thing down. Because is it going to come back? Is it going to come back worse? Is it going to come back? And we don't catch it too soon? How do you go back to just? Or do you go back to living a normal life? Can you talk about that? How you guys might be able to help?

Becky Franks  3:48  
Yeah, I'm so glad you brought that up. Because what we find is that is probably the loneliest moment of the whole trajectory. Remember when I said that when you first get diagnosed with cancer, everyone's got brownies at your door. When you ring the bell. It's it's after months of treatment, maybe years of treatment. A by that time your family is over it. Right? Your friends are over it. And when you ring the bell it almost signifies that you're gonna go back to normal. Then what time is dinner? You come back to work?

Jennifer Van Syckle  4:26  
Well then move on. Yeah, I'm

Becky Franks  4:27  
ready to move on. And when my mom rang the bell I was totally ready to move on like boy Oh, boy, that was just wringing my hands on that right. I'm done. I that was uncomfortable. I don't want to do that anymore. As a caregiver, right, of course, I know better now. So what does it really mean? We talked about a new normal, and that's a lot more Mending in the Mountains is and a lot of our programs is about how do you find your new normal? What does that mean? What's that look like? And it's really important that people are able to get their survivorship services. And that's one of the key components of the State Coalition, is we've got a group of dedicated people looking at how do we find quality of life in survivorship? How do we help people ring the bell and thrive? How do we help them heal emotionally? And physically? I mean, you're talking about physical activity and exercise. One of the things that almost everybody is wrapped with is just a deep, deep fatigue. You know, I'm not a cancer survivor. So when I think of fatigue, I think of the most tired I've ever been times 10. We're talking can't peel yourself off the sofa, fatigue, right? But yeah, you're kind of walking around, you got to figure it out. You got chemo brain, you've got fatigue, how do you get rid of that? You can wait, or you can be active in your recovery and engage and start thinking about healthy nutrition and, and exercise and going out and doing things in the world and assessing your life and reassessing your life. We have many cancer survivors at that moment in time. And once they understand life is a little short. You know, it's short for all of us member. But once they understand that, I've never liked this job, I need a new one. I've never liked you, I'm getting a new friend. I'm getting a new life, I've always wanted to move to England, I'm moving. It's a new normal. One of the joys of working at Cancer Support Community is that ability to want to jump in and love life is brought to me every single day. And because cancer survivors don't mess around, they are living life. They're enjoying the blue skies. They're taking work off to go hike, and that kind of fresh energy as a gift to be around.

Jennifer Van Syckle  6:52  
Yeah, that's fantastic. That's a dose that I think we could all use. In all honesty. I mean, it is

Becky Franks  6:57  
opposite when people think you know, and they think, Well, I don't want to go to Cancer Support Community it's gonna be depressing all these depressing people, you know, complete opposite. complete opposite. This is people who will understand you and, and help you jump into loving life. It really is. Because like I said, cancer survivors don't mess around. They don't have the time. Now, they might have the time, most do have the time. Most will die of old age. Right. But they understand that no one's getting out of here alive. And most of us don't. Most of us take that for granted.

Jennifer Van Syckle  7:36  
Absolutely. very eye opening and so much more to it than what you know, those of us walking around in our average everyday routine. Don't even consider don't even think about and yeah, I'm sitting here thinking I know a few people in their 40s diagnosed with cancer in this last year, I think I need to send them an email after this and see if they even you know, had to go to a Mending in the Mountains yet

Becky Franks  7:59  
actually have a program is called cancer transitions. And it's a really important program. Because, again, you know, when people ring that bell, many, many people will just muddle around and not feel quite right. Just don't feel quite right. I thought I'd be back to my life. I don't know how to find my new normal. I don't even know what a new normal is. Am I crazy? Because I'm not feeling normal? What's this? I can't keep track of my thoughts. And my crazy. It's like, no, that's chemo brain. I've got all these side effects, but I'm grateful to be alive. So I'm not gonna mention to my doctor, right? So cancer transitions. The sooner you can get into that program, the better it is. It's four sessions. And it really literally walks you through medical management, understanding all the side effects and which ones we can we can help you manage. There's a lot of ways to manage the side effects. We don't have to deal with them anymore, right? How do you start exercising, what nutrition is important? How do you manage these feelings of not necessarily like you fit in? You know, how do you figure out what this new normal means? That sets you on a whole trajectory of healing and thriving and doing great. So you kind of muddle along and wait for years, and just hope you get better. But you can jump into cancer transitions which is offered every two months here, virtually and in person and you can get better super fast and start to thrive. It's free of charge. So how do you find it just on our website? You can pick up the phone give us a call. All the phone numbers everything's right there cancer, CancerSupportMontana.org because most of those days you I see people live with side effects that just it's just so painful. It's like why have you been living with that for two years? We could have addressed it and it could be gone by now.

Jennifer Van Syckle  9:59  
There's a different choice. There are two paths, I'm either going to survive and thrive, or I'm going to continue on. Yeah,

Becky Franks  10:06  
I don't make up any words, but there's one I do make up. It's called the grateful patient syndrome. That's a Becky Frank's invented. thing. So just for the record, it really is where you get done with cancer treatment, and you're so grateful that you're still there, and that your hair came back, that you're not going to talk about the pain that you have in your shoulder, you're not going to talk about the sexual health issues that you're experiencing. You're not going to talk about the chemo brain that you're experiencing. You're not going to talk about the sadness that you're experiencing. Every single one of those things that I just mentioned, can get better. If you just say something, and it's not even that hard to get better. And I can go on the State Coalition map and help you find those services anywhere you live. So there you go. Sure. Fantastic.

Jennifer Van Syckle  10:58  
Oh, an example just from my own personal life, I had a colleague whose son faced cancer for many years. And he, you know, rang the bell is cancer free. It was actually the mother, my my colleague, that he would get a cold and get some inflamed lymph nodes. And she wouldn't sleep for days out of fear. It's back. It's back. They'd get him in biopsy those lymph nodes, oh, it's just a reaction or Oh, it's because he cut his thumb here. And it was an infection that you know, or is there support for, you know, the caretakers out there?

Becky Franks  11:32  
Absolutely. And that's one of the things that we address a lot is, How do you manage that constant anxiety, of fear of recurrence for both the caregiver and you'll see on our website, friends and family, because caregiver gets that term gets to be confusing, but for the friends and family and the patient. I mean, that fear of recurrence, you know, there's there's this term that's really weird, it's called Scanxiety. Two things that are interesting. One is, when people have had cancer, you'd think that they would be getting their mammogram like every month, or one wanting to get their mammogram, mammogram every month, right? Just to see, oh, my gosh, is it back? Because it's so you're so afraid that it's going to come back? And what are you going to do? Right? First of all, how do you manage that anxiety, you know, the last time you got a scan, it really sucked. It was horrible, right? Because you got diagnosed with cancer, so don't want to do that again. And so it's so frightening that many, many cancer survivors don't get screenings, they don't Now go get a colonoscopy, and they don't go to the dermatologist and get their skin scans anymore, because they're almost afraid to get into that place. Not all but you know, some some cancer survivors, they're like in there all, and they're getting all their scans all the time. But for many, many they don't get any scans, which is a mistake. If you have had that anxiety of reoccurrence, you're not alone. You're not the only one. And so how do you manage it, just like you manage everything else, you learn ways to deal with it. And that's where being with other cancer survivors, and learning how they manage it, and really looking at how do you stay mindful in that time, and, and help manage the situation, through information and through breathing and through being able to reach up and call somebody? Remember, what I told you is that community is stronger than cancer.

Jennifer Van Syckle  13:30  
Yeah, absolutely. Absolutely. It's funny, you mentioned this scanxiety. My, my career prior to this one, I did ultrasound for a while I'm almost 20 years into it now. And we would do that, you know, you've lost your other kidney to cancer. And we're scanning it today to see if we see a mass. We're doing your yearly screening. We would even see it with miscarriages or pregnancy loss where people would come in and they'd literally be like, Can we do this in the other exam room because this is the room that it happened. And this is the room where that tumor was found, or this was the room where I found out my 35 week baby didn't have a heartbeat anymore. I can't even walk through those doors, you know, and I would see a lot of good coping. I'd see neighbors. Yeah, my neighbor drove me he told me it was time. Yeah, he He's making me come to this appointment, or people having holding hands while you do the exam, to just help them them get through that and it is it is invisible, but massively, massively. There out in the out in the world. And so that's uh, I like your term scanxiety.

Becky Franks  14:34  
That went up. But you know, it's interesting. It's why Cancer Support Community is not at the hospital. And it's why Cancer Support Community is so important. Many of our cancer centers in Montana and across the country have tried hard to hold supportive programs at that at their cancer center. Support groups, maybe Yoga, education works better. But for many cancer survivors, like you just said, as wonderful as our cancer centers are in Montana, and they are fantastic, everyone, I want you to hear that. And they're warm, and they're welcoming. And, you know, I've never heard people rave about another set of people except oncology nurses, oncology nurses are going straight to Heaven. I swear. They are the nicest, kindest, wonderful people. But that's where people get their treatment. And they don't want to go back. So a cancer center puts up all kinds of energy and money to develop all these programs. But then nobody shows up. And they're like, what happened? Why didn't that happen? Well, people don't want to go back to the hospital. They want to go and into a place that's warm, welcoming home, like with people who understand and find their health and healing and well being and healthy lifestyle stuff, right, their way forward. And, and, and they'll go back to the hospital for all their scans, and to see the doctor who's so reassuring to them. And the nurses and everybody who cared for them so well. But for support, they want to go somewhere else. You guys do the medical, we'll do the psychosocial. And together, we're going to be the best care for people in Montana. This is not the fly die state. This is where you can thrive state. In Montana. Yeah. Very awesome. Yeah. That's

Jennifer Van Syckle  16:36  
interesting. That's something too, that even our healthcare systems could think about, you know, you have these wonderful programs, just move them out of the hospital, take them down to the library, or take them to the Senior Center, or whatever community building you've got nearby.

Becky Franks  16:48  
And also the ability to partner with Cancer Support Community Montana, you know, this is what we do, really well. And I mentioned that we're a national organization. And yet the closest one to the south is Phoenix, Arizona, closes to the east is Minneapolis. And the closest to the west, is either San Francisco or Tokyo, depending how you draw the line. All because two women had had a vision and a dream and said, We don't want to be alone during this cancer experience. And so our national organization has a Research and Training Institute and has since 1982. So everything we do, we do really well. We understand that the research behind the experience of cancer, behind the psychological effects of cancer, we understand that distress, we have distressed screening to help people identify issues instead of living with them and being a grateful patient. Instead saying, Hey, I've got something going on. And I need to figure out how to manage it. So everything we do is very specific, to make sure that people who engage in our programs to improve their quality of life, at the time of diagnosis, and through the cancer experience into survivorship, and into end of life, when there are opportunities to be in control of how you die.

Jennifer Van Syckle  18:17  
I was just going to ask if you guys you know, if it doesn't take the path of surviving, if it does need to do like hospice and quality of life care, are you guys able to help connect people connect families?

Becky Franks  18:29  
Absolutely. Do remember when I said that? When people have cancer, everyone's cheering you on? You can do fight this, you're gonna beat this. Sometimes you're not. Right. And no one in your family wants to talk about that. Right? And so we're the people who openly talk about death and dying. And we're not throwing pity at it. But we can talk about how you feel about that. What are your wishes, let's get an Advanced Directive. Let's fill it fill out the five wishes form so that you can have choice around how you die. You can do and die at home. You want to die at that at the hospital? Do you want to do every possible thing? Or do you want to peace out? Do you want to be on a ventilator and die on a ventilator in the hospital? Or do you not? What do you want to tell your kids and your family before you die? What do you want to do before you die? It is one of the gifts of cancer most of the time is that you have some leeway before you die. When you die of a heart attack. You're fine now and now you're not and you have no chance to even call your wife and say, Honey, I love you. Right? But with cancer, if you're willing to take the gift. There's a lot of gifts. And there's a book called Final Gifts and and also the other one that we enjoy sharing is Being Mortal. Being Mortel is an incredible book that really talks about end of life. And, and a cancer support community. It's one place you can call up and and we can say, Have you thought about dying? What does that feel like? What are you afraid of? What are you concerned about? Because if you're a cancer survivor, and you look at your loved one the face and say I'm afraid to die, which most cancer survivors are, they're going to start crying and you're going to stop talking. But I can sit with that burden. Our staff can sit with that. Just sit by your side and be with it. Don't just stop talking. You can cry a little bit. That's okay. It's it's all fine. We can we can hold that space. But there are a lot of gifts to be had. If you're willing to take that time,

Jennifer Van Syckle  20:58  
that's fantastic. And I think you're I think you definitely hit on something. You know, the doc says, well, the CT scan shows it's everywhere, then every single person in your life is saying you're going to fight this chemo radiation, we're going to Texas, we're going here, there, you're fighting it and you're sitting there feeling? No, I can't, you're already dealing with a lot, you are already dealing with the biggest load of baggage, probably anybody could. And now you have to turn and go against your support. And so who do I even talk to about this? Yeah, and so that's, that's fantastic. Because I could see where a lot of people would feel like they just don't have that option to talk. I want to just talk about this objectively, with somebody how I've been feeling. I've been feeling like crap for months, I feel sick, I feel a lot of pain. Already. That's what got me to the doctor for this diagnosis. So that's, that's really, really cool, Becky, and you're you're absolutely right. I've always I've always said that, at least for the most part with cancer, you get to say goodbye, which is beautiful, which is a beautiful, beautiful thing.

Becky Franks  21:54  
And also it's a time to say, what do you need to do before you die. And you know, some some things I've heard. I need to get married to the man I'm loving right now. Or another another woman. Her daughter said, I need to hear wolves howl. And so she wrapped her adult daughter up in her wheelchair and brought her to a wolf center. And they stayed overnight. I woke up in the morning and listened to the wolves howl. And then brought her back home and tucked her in bed. And she died peacefully. But she did what she wanted to do before she died. Because someone asked her so it gets done goosebumps sometimes it's not that profound. Somebody's saying to a wolf howl that's important. Yeah. And so there's choice. And that's the thing, you know, Cancer Support Community is an empowerment model. You have cancer, and you have choice, you can choose how you manage it. You can choose your treatment, you can choose how you die, you can choose who you talk to, you can choose how you manage it, we empower you to do that, we're not going to tell you what to do. We don't know what you need, right. But we help people have choice. There's no pity around here. And when people understand they have some choice around the dying process. It changes the whole trajectory.

Jennifer Van Syckle  23:31  
I could see that. Yeah. And that support. That's huge. So if you if people if anybody listening has a neighbor, or a friend, a loved one family member, or anybody, you know, to be pick up the phone, or text or send a Facebook message or something, hey, check out this place. And

Becky Franks  23:50  
remember that even if you live in a very small town, if you live in Plains, Montana, services are available to you. And everything is free of charge. And we also know how to use the mail. So if you need a wig, we can mail you one, we serve Montana, the entire state. So please reach out. And if you want to be a part of the state coalition, we need all kinds of people to be a part of that. We have changed the trajectory of cancer care in Montana already. And we will continue to do that. We also partner with our our American Indian friends, who are part of MAIWHC (Montana American Indian Women's Health Coalition) and so we work collectively, and side by side. And so there's a lot of opportunity to give back to be a part of the solution. And if you want to find out more about that, reach out to the Montana Cancer Coalition on your search and you'll find that as well as well as the maps

Jennifer Van Syckle  24:55  
on behalf of myself and the team that helps to put this podcast together we want to thank Becky for stopping by and sharing everything she did with these two episodes was incredibly insightful and informative. If you would like more information on Cancer Support Community Montana, visit our website at talking health and the 406 stat Talkinghealthinthe406.mt.gov. And if you haven't already, if you could click that subscribe button wherever you download podcasts. Join us again for our next episode, where we'll be back with a new series and a new guest. Until next time, take care

Transcribed by https://otter.ai