For nearly 25 years, Kelly Grosklags has dedicated her practice to minimizing suffering through her work in oncology, palliative care and hospice. An experienced therapist, Kelly is a licensed clinical social worker and a board-certified diplomat in clinical social work. She also earned a fellowship in grief counseling from the American Academy of Health Care Professionals. Kelly speaks frequently about end-of-life issues, including care, grief and loss, both in person and on her website, Conversations With Kelly. Her passionate and supportive demeanor helps patients, caregivers and health professionals connect with the wisdom of making life more meaningful, coping with depression and anxiety, transforming fear into hope, healing versus curing, and the wisdom of dying a good death.
Listen to the podcast to hear Kelly talk about:
- taming the feelings of fear, anger, and loss of control that can come with a metastatic diagnosis
- strategies to deal with “scanxiety”
- how to allow yourself to ask for help
- how and how much to disclose about your diagnosis to your friends and at work
Running time: 46:06
Photo: Geordie Griffiths
Show Full Transcript
Jamie DePolo: This podcast is made possible by the support of Lilly Oncology.
Hello, everyone. Welcome to this edition of the Breastcancer.org podcast. My name's Jamie DePolo, I'm the senior editor here at Breastcancer.org. And today I am pleased to welcome our guest, Kelly Grosklags. For nearly 25 years, Kelly has dedicated her practice to minimizing suffering through her work in oncology, palliative care, and hospice. An experienced therapist, Kelly is a licensed clinical social worker and a Board Certified Diplomate in Clinical Social Work. She also earned a fellowship in grief counseling from the American Academy of Healthcare Professionals. Kelly speaks frequently about end-of-life issues including care, grief, and loss. Her passionate and supportive demeanor helps patients, caregivers, and health professionals connect with the wisdom of making life more meaningful, coping with depression and anxiety, transforming fear into hope, healing versus curing, and the wisdom of dying a good death.
Kelly, welcome to our podcast today. We're going to talk about managing the emotions of living with a metastatic breast cancer diagnosis.
Kelly Grosklags: Thank you, Jamie. An honor to be part of this today.
Jamie DePolo: In our experience, and I'm sure in yours, people who are living with metastatic breast cancer have said that they feel like they're on a roller coaster ride that they can't get off of. Just up and down, and over and out, and inside out. How does a person get used to these feelings and tame any feelings of fear, loss of control, anger, potentially chaos — how do you get used to that?
Kelly Grosklags: Well, first of all, I hear that analogy a lot about a roller coaster, and I think it's important that people understand that these feelings are expected. They're absolutely what we would expect to see with somebody that's going through metastatic disease who is waiting for lab work, x-rays, CAT scans, whatever it may be. And so sometimes energy is best into just letting the feelings be. Whether it be fear, confusion, anger, sadness, rather than trying to fight them, or judge them, or whatever it may be. So the first place I always like to start off with women is just have some understanding and some acceptance around the feelings you're having, normalize them, and let them kind of be. So we let them sit even though they're uncomfortable.
Ways that we can actually work with them tends to be talking about them, writing about them, asking questions about them. Sometimes people have these feelings of up and down, or fear, or loss of control, because they're not actually as educated about whatever's going on with their disease as I would like to see them. And so one of the ways they can cope is simply if you don’t have the information that you need, ask more questions. But we don’t need to do this alone. And if you're on an actual roller coaster, you tend to feel more safe and more secure if you've got somebody sitting next to you that you know, and that you're comfortable. So we want to pull people in that we feel comfortable with. But one of the things I would encourage people to do is to kind of check in. Do I know everything that I need to know about my illness, about this test that I'm having, about what the results actually mean? Because that tends to give us a little more sense of control.
Jamie DePolo: What if someone feels… I'm trying to think of how to phrase this. If they're not even sure what they don’t know, if it all feels so overwhelming, how do you start?
Kelly Grosklags: Well, there's a lot on the internet, and sometimes we have to be very careful, because when we look up something on the internet everything pops up, and it's not specific to us. So most healthcare or breast centers across healthcare systems have an advocate, or have a navigator, or have somebody of a professional standing that can help walk us through that. So we would start there.
I also think reaching out to other women — whether it's through some of the social media sites, whether it's through Breastcancer.org, whether it's through other organizations — to start asking questions. But we do have to be a little careful in terms of internet, because we can get very flooded with very dark information quickly, and overwhelming information quickly. So I really recommend starting with the breast center, or the place that you received your diagnosis from, and asking if they have a navigator or somebody of a professional status that can help walk you through what the steps are.
Jamie DePolo: What about anti-anxiety medications? Some of the women on our Discussion Boards have said they were very helpful for them when they were first diagnosed because they just couldn’t move, and they found some relief.
Kelly Grosklags: I am one of the believers out there that there is a post-traumatic stress, kind of a PTSD, component to hearing the three words, “You have cancer.” And so the anxiety component is a very common part of, obviously, hearing you have cancer, or you have a recurrence, whatever that may be. Many of the people I work with use some type of medication to help with anxiety. I think if it's something that’s going to be helpful for people, I don’t think that there, again, should be energy — I mean, I talk a lot about, “Where do we choose to put our energy?” And when you’re originally diagnosed, or when you have a recurrence, it is not useful to put your energy into judging yourself or shaming yourself. So if the medications are helpful, by all means, use them, in addition to either talk therapy, meditation, prayer for some people, whatever it may be.
But anti-anxiety medication should be look at as a bridge, and anything that can bridge us from the time of chaos over to the time of feeling more content, and it's a healthy choice, should absolutely be used. And I would say probably 75% of the people I work with have used them at times, and it helps just get you grounded so that you can listen to the information you need to hear, make the best decisions you can make. And actually, what we do know is that when anxiety and depression are managed, the treatment for cancer can work better. So there's another reason to actually think about using the medications, is that so we can actually allow the treatments that we're going to be receiving to work better.
Jamie DePolo: Once somebody has crossed that bridge to being slightly more comfortable, feeling somewhat in control, then there are a lot of things facing them, how much to tell your friends and your acquaintances — and then maybe you feel like you're telling the same story over and over and over again every time you see somebody new. So do you have any recommendations on how to do that so it's not quite so stressful and upsetting?
Kelly Grosklags: Excellent question. Again, back to energy, we’ve got to manage our energy. First of all, there should be no pressure on somebody that they have to tell everybody. I think one of the really important things is that people get to decide, initially at least, who is going to find out. Now, news travels very quickly when somebody's diagnosed with cancer. So when I'm working with people, I really want to stress to them that they get to decide who hears this information first and that they should not feel pressure to have to tell so-and-so because their mother thinks that so-and-so should know.
Off the bat, I just want to say it's your story to tell, it's your choice on who knows. Now, it's an exhausting story to tell, it's not a fun story like you got engaged, or you're having a baby, or whatever it may be. I think it's an important distinction to know that every time you tell the story, you're getting retraumatized.
One of the recommendations that I want to make is… and there's many sites out there, the one I'm most familiar with is CaringBridge, and I have to say that CaringBridge is a wonderful tool in that it allows for the story to be told, and to go to whoever you want it to go to, but everybody is hearing the same version of it. And I think that’s really important, too. Because when we tell our story, and then that person tells our story, sometimes the details get mixed up, and sometimes the details get elaborated, or details get left out. And so then what ends up happening to a lot of people I work with is they get these panicked phone calls because they heard it from so-and-so, and then they're trying to manage everybody's anxiety. And that is one of the things I want to avoid, is that if you were diagnosed with cancer or you're living with cancer, the last thing you need to be doing is managing everybody else's feelings about it. And every time you have to verbally tell the story, you're going to get the reactions from people, and then whoever they're telling, and the reactions, and reactions. So sometimes the best way to do it is either writing it in a blog form, email form, whatever it may be.
I think another thing that's really important is when you feel like you're having to take care of other people because of when people are being "traumatized by your story," and you're feeling like you have to take care of them, that’s where you kind of have to know it's time to back out. And it's okay to say to people, "I can't talk about this anymore, and I need to hang up the phone," or "I need to go." Another recommendation is you pick a couple spokespeople for you. So, trusted people that know your story that can kind of do a calling tree or an email tree, whatever it may be, so that you don’t have to keep telling the story over and over again.
Jamie DePolo: Just in case anyone's not familiar with CaringBridge, that’s a tool that allows people to basically write an email and then send it out to a giant list of people and update them all at the same time.
Kelly Grosklags: That's exactly it. And a clarification — CaringBridge just happens to be the one I'm the most familiar with because it's across the world, it's the one I've worked with the most, I feel like it's got the best ethical practices behind it that I know about. But what I will say about CaringBridge is sometimes there were these previous opinions about CaringBridge that it was only for people that were dying. And that’s absolutely not true. It's actually for people who don’t have cancer as well.
So it's meant to be a tool where you can write updates, and then the nice thing about it is people then can write notes back to you. Because another exhausting thing, which everybody listening to this will be familiar with, is the guilt of not returning the phone calls, the guilt of not returning the emails, the guilt of not responding to the thank you notes, and all the food that's coming. Again, we don’t have all that energy. We have to manage it in a way that we can. So this is a nice way to be able to communicate back and forth without having to respond to every single email.
Jamie DePolo: That's an important message I think for everyone to hear. It can be a hard message to actually carry out. As women, we're always taught to think about other people first, so I'm glad you're reiterating that because it is very important.
Kelly Grosklags: Completely has to be focused on you, the person. And you know, there's a lot of people, and especially women, we aren't always the best at taking care of ourselves, and we worry about everyone else and everyone else's emotions. And when cancer comes in someone's life, that is truly the time to start thinking about your emotions first. And really, I can't tell you, Jamie, how often I've seen people get sicker because they're so worried about managing everyone else's symptoms — you know, symptoms of fear or anxiety — and they're completely abandoning themselves. And so we’ve got to kind of pull back, reshift our focus, go more internally, you know, how are we doing, allow people to take care of us, and then eventually, we are able to reach out to other people.
But it's inevitable that we're not going to do well if we're only worrying about other people. So the more tools we can get, the more people we trust that we can pull in to help with our communication, I think is really the best. And to let go of the guilt and the shame around not returning everybody's calls. That's trying to take care of everybody else. And I really want people to hear today that it's important to start getting energy inward, because that's what the body needs for healing.
Jamie DePolo: Excellent advice. Now, there's another minefield that many people with metastatic disease have to navigate, and that’s the workplace. As more people are living with metastatic disease, more people are continuing to work. There's, again, the idea of disclosure, do you tell people, do you not tell people, how does one keep things as normal as possible? I mean, obviously, not all people are going to look like they're in treatment — some may look extremely healthy, some may look not so healthy. So how do you navigate that?
Kelly Grosklags: One of the first questions — I work a lot with people, and we're talking about work — is I really ask them when they say the phrase to me, "I have to work," one of the things I like to explore with people is — because that is a reality, we have a lot of single parents, we have health insurance that we may be the carrier of, whatever that may be. But one of the things I like to ask people is, “Is that absolutely true?” And so we need people to kind of stop for a minute and go, “Okay, what are the reasonings we absolutely have to work?” And I think it's just one good question to kind of ask ourselves, because we're so in the mindset of, “I have to work, I have to work.” And sometimes there are options to maybe take a leave, or not work for a while, so that’s just one caveat I want to say. The thing about work, sometimes it's important that people… they want to work because they want to keep some of the normalcy, some of the structure, some of their purpose, and that I completely understand.
What I actually recommend is, I think transparency is best, to be open as much as you feel comfortable with, with your manager, if you feel comfortable with the work people that’s fine. And the reason I say this is because it's going to be difficult for people to support you and to grant you what you need if they don’t know what you're going through. And so we do have laws that protect people, they're not always followed, but that people should be protected in their workplace if they have a chronic disease or a disability, or even if they're going through cancer treatment. And so I'm a firm believer in transparency. I don’t think it needs to be used a gossip tool at work, but for people that are questioning, “Should I be telling my manager?” Yeah, because your manager really can't help you and support you unless they know what's going on. Many people with metastatic disease look okay. They don’t necessarily look sick. A lot of my patients look well, but that’s not necessarily the issue. It's how do they feel, it's the chronic pain, it's the chronic fatigue, it's some of the chemo brain, it's a lot of different things that can get in the way. And most of the time, our workplace is just going to judge us on how we look.
So I kind of have a joke with the people I work with, you know, “Why don’t you wear your pajamas to work and you might get a little more empathy, and don’t brush your teeth, and don’t put makeup on today, because it might get you farther.” And we joke about that because you know, there's many women walking around that look well, but feel different inside. And one of the things a lot of the people I work with talk about is kind of that annoying phrase of, “You look so good today.” And it's kind of that affirmation and the support around, “Well, you look good, so you must be doing well.” And I think you know, yeah, it's important to look good, but it's also important to be transparent about what's really going on inside.
So I recommend transparency at work. I don’t know any other way around it because you're going to need time off for appointments. One of the patient's I work with who has metastatic cancer has a wonderful saying, she says to her, normal is just the setting on the washing machine. And I'm like, “Well, that’s a pretty funny thing to say,” because it's true. And so we're trying to go for normalcy, but what is that? I mean, our new way of life kind of develops each day as people live through metastatic disease, there's kind of a new day each day.
Jamie DePolo: And that makes sense, too, because as you said, if people think that nothing is wrong, they're not going to treat you any differently, and maybe you do need to be treated differently. As with most things, it's going to be individualized. You have to do what's right for you that gets you what you need the most.
Kelly Grosklags: Well, exactly, and you know, there's nothing to be ashamed of here. And sometimes — now, there's various reasons people don’t talk about this at their workplace; some of them I'm very understanding of. But sometimes we have to get legal backup, too, if we're not being treated right at the workplace. But I truly believe one of the reasons we don’t say anything is out of fear, and those fears can be talked through with people we trust. But sometimes when people complain to me that they're not getting what they need at work, we come to find out that they haven’t really been transparent.
Now, if you are transparent and you're still not getting what you need at work, then sometimes we have to go higher above in the organization, or whatever we have to do. But most people with metastatic disease are going to need time off of work. It's inevitable, whether it's for appointments, scans, treatment, whatever it may be.
And again, back to the energy, where do we want to put the energy? Transparency takes less energy sometimes because otherwise, we're trying to hide why we're missing work, and trying our best to look the part. And I have watched people not disclose it because they don’t want their community to know for privacy reasons. And I can respect that, but I also see them suffering at a level that is unfortunate because of all the energy going into trying to hide this. And they're missing out on a lot of opportunity for support, too, by the way, for people not knowing. So you know, kind of the rule of thumb is… but you may just want your manager to know, and a couple of trusted people. I'm not suggesting the entire company has to know. Again, you get to choose who knows, but you do need an ally at your place of work.
Jamie DePolo: And you brought up scans, and that leads to my next question, scanxiety, a common phrase among people with metastatic disease. Most, I believe, are going in for scans every few months, so there's this looming sense of fear and dread every time that happens. What do you suggest to people? How can you manage that, live with that, feel better about it?
Kelly Grosklags: Certainly it’s something I work with people every week on, and I love that there's actually a term for it. I've been hearing this for a long time, scanxiety, and boy does it fit. And for people that haven’t heard of it, when you say it in front of them they just, “Oh my gosh, yes.” And a couple suggestions I have.
First of all, there are various ways that some of the physician groups practice across the states or the countries. One of the things that I have been asking the patients I work with that has really helped on some of the anxiety is to see if you can get the results the day of or at least the next day. Even if you can't make an appointment with your oncologist, to be able to get the results will help in some of even this anticipatory anxiety, because the waiting is often what is so difficult.
We can do a lot, even with difficult news, because it puts us a little more in control, we have to remember there will always be a plan. And that’s another way that I help people kind of cope with scanxiety, is regardless of what the results are, whether there's uptick in your PET scan and it shows we have advanced disease, or we have stable disease, or let's hope we have smaller disease. But regardless, there will always be a plan. Sometimes the plan is to stay the course, sometimes the plan is to switch treatments, and unfortunately, sometimes the plan is things are not working and we're going to move more into end-of-life care. But it still is a plan, and one of the reasons I see people get so anxious is because of the unknown of what this test is going to show. There's this unknown component to it, and we don’t do well with unknowns. And I reassure people that our unknowns will become our known, and where we are today was once our unknown, now it's our known, it will also happen in the future. So to kind of reassure ourselves, “Okay, there's going to be a plan, it will be my known, there will be people to help me.”
And those are some ways to really work yourself out of some of that anxiety. Some practical ways are distract yourself prior to going to the scan or if there's a waiting period between the scan and the results, do things you don’t typically do. Whether it's go to a movie, go try a new restaurant, even if we can get distracted for a couple hours it's good for the body, it's good for the mind, just to kind of get distracted. And I think that’s a really positive way to go about it. Writing about it, talking to people about it. But one of the things that I have seen help people the most is to try to decrease the time between the actual scan and the results.
Be an advocate and ask if even the nurse or somebody in the office can call with the results. That seems to help people quite a bit, knowing they're not going to have to wait another week to hear what the result were.
Jamie DePolo: In your experience, are most practices or clinics open to providing the results that way if a patient asks?
Kelly Grosklags: Yes. So I work in Minnesota, and I will say that I'm quite impressed with the clinics here. I think we're getting more and more in-tuned to the amount of anxiety that these scans are raising in people, and we're getting more aware of the detriment of what anxiety can do to somebody. And that’s what I was originally saying, and one of the ways I will advocate with the physician groups is that the anxiety gets in the way of wellness, so the anxiety gets in the way of… whether it's the chemotherapy, or whatever we're trying to do to address the disease, it can actually get in the way of it. So we can move ground, if you will, about when we're treating people, if they're highly anxious for an extended period of time, we actually can do detriment.
The unfortunate thing is if we get a call, they may not have time to answer a lot of questions. But the people I work with generally say to me, especially people with metastatic disease — and if they've been living with it for a while, they feel better knowing either way, even if it's not good news, it's one less thing they have to think about. And then they're comfortable knowing that when they visit the physician, or the physician's assistant, a nurse practitioner, next week that there will be a plan. If you can schedule your scans, and then schedule your follow up appointment that day or the next day, I mean, that is the most ideal, is to get the results in person. But really not having to wait more than 24 hours. Sometimes people don’t even know that’s an option, and so they're not even aware that’s an option, because it's not something that’s offered.
Jamie DePolo: You have to ask for it.
Kelly Grosklags: Yeah. It's the timing of it. And I just really empower people to do that — and I'll probably get a bunch of calls from my physician groups after they hear this — but you know, again, it's the best interest of the patients, and the people living with this. So that’s kind of my number one.
Jamie DePolo: I think one thing that some people forget is that people who are living with metastatic disease are living. Emphasis on living. So not only do they have metastatic disease, they have a life with all the stresses that everybody else has: household, work, finances — maybe money is tight, and for many people diagnosed with metastatic disease money is tight — family issues, if they have kids. How can a person balance all this? I mean, I know I have trouble just balancing sometimes my daily stuff, and then you put metastatic disease on top of that. What's your advice?
Kelly Grosklags: Well, I think the key word here is living. And that’s what we want to really help people with metastatic disease do well, because there's a lot of fear or focus on not wanting to die. But we want to kind of reframe them and go, “Okay, we're living.” And sometimes people crave things like, “Oh, I have to go to the grocery store today.” I’ve seen some of the people I work with who have metastatic disease say they love the days where that’s kind of the thing they have to do, is go to the grocery store, go to the bank, pay the bills — some of those kinds of things that used to bring them such stress. I mean, it's all perspective, “used to bring them such stress,” but it's not related necessarily to their disease. They don’t have to go for a scan, they don’t have to… So sometimes, one of the ways we can even appreciate this is go, “Oh, this is actually kind of a nice day.” It's overwhelming because it's on top of everything else, but one of the ways I work with people, or one of the suggestions to keep perspective on this, is that these are things we can handle, they're overwhelming, but we break them up.
So let's say we have to go to the grocery store, let's say we have to take the kids to the dentist, and they're exhausting because they're on top of the cancer experience, but they're not necessarily things that people can't handle. And I have seen so many of my metastatic patients say to me, “I crave the day where that’s the only thing I have to be concerned about. I like those days where I don’t have to go in for treatment, I don’t have to…” So sometimes it's just like appreciating, if you will, that there are days where, “I can have gratitude, or some of these things that resemble what my previous life used to look like.” And so it’s a mind shift.
Now, I will acknowledge, yes, there are a lot of things on top of living with the disease. How do you cope with them? Well, you can't cope with them alone, and it does take a village to get through this. And I see so many people — again, especially women, because we are very capable of multitasking. It's very important to us that we have independence and that we're seen as strong. Some of the strongest people I know are the most vulnerable. And in their ability to ask for help, their ability to admit they can't do it, their willingness to receive maybe some assistance, whether it's financial, whatever it may be, a grant, support from organizations. And it is not about being weak. The people that I see having the most difficult time trying to manage all of these things on top of the disease are the ones that are trying to do it alone. We can't do it alone. It's not only that we shouldn’t, we can't.
Jamie DePolo: Your comments about asking for help are very important because I know there are a lot of people that have a very, very hard time asking for help, or being honest about, “Wow, I really feel lousy today,” and they feel like they need to keep the game face on, and everything's fine. How can people overcome that? How can they feel better about asking for help, and do it when they need to do it?
Kelly Grosklags: Well, I think there's a lot of reasons people don’t ask for help. One of the reasons I've seen is the fear of rejection. And people have asked for help in the past with other things in their life, and maybe people haven’t shown up for them. So I understand that can be a real hurdle. But then we find the people that can, or the organizations that can.
Another way to look at this is to ask yourself, have you helped other people in the past with whatever it may be? And most of the time I'll say to people, “Now, have you helped people, have you gone over and brought a meal, or have you driven somebody to an appointment?” Most of the time it's like, “Well, of course.” And I'll say, “Well, part of the energy of the world is allowing things to flow back and forth like an infinity sign.” So if we've done that for people then we need to allow that to come back to us. And then we'll do it again for others and it's kind of like we recycle this, and this is how we make a better community and a better world. To shut that down and to not let other people help us is to truly shut down that ebb and flow of helping, receiving, helping, and receiving. And I don’t recommend that. I think it's important that we allow people to help us just like we have helped others in the past.
There's several people that it's not only hard to ask for help, but they think it's a sign that they're weak, or they think it's a sign that they're wrong, and again, back to what I said earlier, I really believe those of us that can be vulnerable and real are the strongest people. It doesn't take as much strength, so to speak, to pretend in a situation like this as it does to admit and say, “Hey, I need some assistance.” And if you can't receive it on behalf of yourself then receive it on the behalf of the people that you love, because they also are going to need some assistance. Whether it's from a community, an organization, a place of faith, neighborhood, whatever it may be, if you can't receive it, if you don’t feel like you're worthy enough or whatever that may be, then think of those that are living in your household or that are in your life that could benefit from the support, and receive it on their behalf. I think that’s what's important.
I hear a lot from people that get a lot of clichés. “Call me if you need anything, let me know if I can do anything for you.” And so if you're listening today, and you're wondering how do you help somebody with metastatic disease, be very specific on what you can do. “Hey, I'm available Saturday, Monday, and Tuesday. I'd like to come over, do your laundry and mow your lawn. Which days of those work?” Or, “I'm going to be bringing over a meal Monday and Wednesday, would you like me to leave it on the front porch, or do you want me to come in and…” You know, those kinds of things. “I'm available Tuesday and Thursday, I can drive you to appointments. Do you need me on both days, or which day do you need me?” I think to be as specific as we can is very important, because 90% of the time, if you just say, “Call me when you need me,” people aren’t going to do it.
Jamie DePolo: Being someone who's been on the supportive end, it makes me feel good to help. So I would add that to somebody, if you're having trouble asking for help, think about how good it might make the person feel that can help you. Because they may be feeling powerless to really do anything, and if they can make you a meal or take you to an appointment, it's like, “I feel like I'm helping this person recover, get better, be stronger.”
Kelly Grosklags: Absolutely. Absolutely, Jamie, and you know, sometimes we won't need the help. And I think sometimes people are very capable of driving themselves to appointments, but sometimes we're not. And I think it's so important that we understand both are part of life. There's times we can do it and there's times we can't. And to just know that if somebody drives you to an appointment, that doesn’t mean you're never going to be able to drive yourself to another appointment. It's not completely giving in or throwing in the white towel, or whatever, it's not throwing in the towel. It's just allowing energy to be spent in the best way it can.
And again, with metastatic disease, it is a different day every day. And so sometimes what I'll do is I'll say to people, “Have your plan B. Your plan A is that you're going to drive yourself to treatment on Monday, but have plan B where you have the neighbor on call. If you wake up that morning, your hope is that you can do it, but if you can't, then you go to plan B.” It's always good to have plan A and plan B when it comes to… and this is kind of one way to think about receiving help: Plan A is that you want to try and do this. But if you cannot, then you allow the energy to flow back and go to plan B.
Jamie DePolo: That sounds like very good advice. Kind of along those same lines, how does someone with metastatic disease make sure her emotional needs get met? I know a lot of people talk about feeling isolated because the family, friends, co-workers, other loved ones, they're not really sure what to say. They don’t have any experience so they say nothing, or they pull back a little bit because they're afraid of saying the wrong thing. And I know this is sort of putting the burden on the person with the disease, which sounds terrible, but how can she work through that?
Kelly Grosklags: First of all, I think it's important that, when you're living with cancer, that you're quiet enough, at times, to even tune into what are your needs. Because it's going to be really hard for people to address our needs when we don’t even know what they are. And not everybody living with cancer, or metastatic breast cancer, are going to have the same needs. So, one of the places to start is, do you even know what you're struggling with emotionally? Do you even know what kind of your main triggers are, or the things that keep you up at night? Because if we can clearly and better communicate these things to people, we have a greater chance of them being able to support us. I work also with caregivers or people that love people who are struggling right now because of cancer, and they'll say things to me like, “Well, I asked them what do they need, and they say to me, ‘I don’t know.’” And so I have empathy for both sides because it's frustrating to not know, but it's always frustrating to try and want to help, and not really know what your target is.
So in those situations, sometimes all we can do is hug people. People with cancer are not broken, so there's nothing to fix. It's more about holding the space for people, loving them. What we want is to know that we're loved, and we're supported, and people are not going to abandon us. And I think that’s kind of the number one thing that we can do for people. Sometimes there is nothing to “do,” it's more about being with people. And that can kind of be a lightbulb for a lot of families and a lot of partners, where all of a sudden it's like, “Okay, I can't actually change what is going on here.” Because ultimately, what the best thing you could do for somebody is take away the disease, and that isn’t possible. So we can help elevate some of the fears, some of the anxieties, if people are having bad dreams we can listen, we can hold them, be with them. And that, sometimes, is the most influential thing.
So, what I do hear from the people living with cancer... I do a lot of grief and loss work with people on not only have they lost their health, or their innocence, a future, or whatever it may be, but they maybe have lost some very important people in their lives because these people don’t know how to show up. And it’s a common thing. There’s a lot of changes in relationships that happen. Especially with metastatic disease that’s more chronic, because people are living years and years and years with metastatic breast cancer, I mean years with it. And the friends are really good, and family can be really good up front. And it's not any different when there's a death in the family. People are really good up front. They show up in that first month, they show up in those first 3 months, they call, they ask, they offer. It changes as time goes on. So people end up feeling this sense of abandonment and loss, and they will pull back. And we always find out who our people are. Sometimes there's pleasant surprises where people come into our lives and show up for us, and we didn’t necessarily have a close relationship with them prior to the disease.
I love Maya Angelou's quote about when people show you who they are, believe them. And I think that can go both ways. Sometimes people aren’t the people we thought they were, and sometimes people are better than the people we thought they were. So it's important that we kind of be open, that we acknowledge when there's a loss. Most people living with metastatic disease don’t have the energy to be chasing around people that aren’t showing up for them. However, I always encourage my patients, and I'll say to them, “Is this a relationship you want to invest energy in?” And if they say, “I think so,” then I'll say, “Then you need to be very transparent and authentic with how you're feeling. And you need to, point blank, tell the person they've disappointed you, they've hurt you, you need them to show up for you, you need them to call you at least once a week,” whatever it maybe. So that’s one of the ways she can get her needs met, is to have the courageous conversation, to be transparent, to be honest and real. If people say to me, “I don’t think it's worth my energy. I thought it was, but that was an illusion. I don’t think it's worth it”? Then we work on the grief and loss around it, and then I start saying to people, “Who are the people showing up?” And we focus there.
Jamie DePolo: Kelly, thank you so much. This podcast, I think, has been full of really great information. I so appreciate your time and your advice.
Kelly Grosklags: Jamie, my pleasure, and I hope those people that are listening today can continue to have hope for things to be better. Because they will always be better in the sense of emotional. They can always be better. So I wish everyone well, and I wish you well. Thank you.
Jamie DePolo: If you enjoy listening to the Breastcancer.org podcast, please write, review, and subscribe to it on iTunes. That helps other listeners find our content, and your support allows us to continue podcasting. Thanks!