Transitioning to a Different Normal After a Breast Cancer Diagnosis

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org senior editor Jamie DePolo.

Jamie DePolo: Hello. As always, thank you for listening. This podcast is the audio from a special virtual community meetup featuring licensed clinical social worker and grief counselor Kelly Grosklags. Kelly helped community director Melissa Jenkins lead this meetup on transitioning to a different normal after breast cancer treatment. We hope this podcast brings some hope and comfort to you. 

Kelly Grosklags: Hello everybody. Really great to be with all of you today. I think when Melissa reached out, we talked about what would be a good topic and I am…so, as Melissa said I’m Kelly Grosklags. I am here in the Minneapolis area. I worked in oncology in the hospital for off and on, 12 years, also in hospice and palliative care. Then I had a private practice in oncology, so I feel like my knowledge comes from working with people who have had cancer. 

I think what would be very helpful for me, I’d like to hear where people are from. So, if you could just take a minute just to put in the chat where you’re from. We’ve had lots of different states, countries that have attended these and I love that.

So, what we’re going to do today is I’m going to talk a little bit but then I really want to have an opportunity for you to ask questions and comments because I think that’s really important that I am able to address what you’re needing versus just what I think you need to hear.

So, as we talk about treatment and we talk about getting diagnosed with breast cancer, I look at getting diagnosed with cancer as a trauma. I will just say that right out of the gate that even if it’s early stage, which is wonderful, it’s still traumatic and it’s something that a lot of people fear and it’s something that when people are diagnosed I want to look at it as a traumatic experience. It is important to give yourself just a pause for a minute here about what you’ve been through, what you’re going through.

I’ve seen many people experience post-traumatic stress disorder when it comes to a diagnosis. PTSD is not just for war or accidents or rape or some of those things we hear about more common. It is very common when people are diagnosed with cancer to experience post-traumatic stress. So, why do I say that? Not to be a downer but to set the stage for that again no matter what stage you are, I look at it and I have a lot of empathy for it because I believe it’s traumatic for people for people that are early stage. 

This is for people that are early stage. I also work a lot with people with metastatic disease, but I will say that…I don’t know if you guys have heard this, but I’ve heard several complaints if you will from my patients where people say, "Well at least," and then dot, dot, dot. "Well, at least it’s early stage." "Well, at least it’s this. Well, at least it’s that." No. It is cancer and you deserve all of the support and time and space that is needed to work with this. And so, the both and, right? The space for both.

It's so great that it’s early stage, that it was caught early, that there’s a treatment, that it’s curable, whatever it may be. That is very true and in that same space, this has likely turned your life upside down, at least temporarily and your family’s. Cancer doesn’t care about anything in terms of race, religion, socioeconomic. It doesn’t care if we had a graduation on the calendar. It doesn’t care if we had a vacation on the calendar. It doesn’t care about that. 

And so, you know, I just want to be very, very clear that that’s where I come at this, is that I want to acknowledge that there is space for both. "I am so happy that your cancer was detected early and I want to really create space today," that even all the messages you’re getting; "Isn’t this great. Oh, my gosh. Well, at least..." This is a space that I really want to hold the hope for you and the acknowledgement for what you have been through and what you go through.

We also know that when there’s a diagnosis of cancer that there’s a ripple effect. That it effects multiple people, whether it’s your family, your coworkers, your neighbors, your best friend, whomever that may be. And so, there’s multiple people that are involved in a cancer diagnosis.

I’m going to read just a small excerpt from my book that I just launched and I, when I was thinking about this talk today, I was thinking about some of the things that people have shared with me over the years when they have been diagnosed with breast cancer.

For people that have had reconstruction or have had mastectomies have said to me they look at themselves they don’t recognize themselves. People have said they feel broken. They don’t recognize themselves. They feel like a burden. They feel maybe not worthy of all the support they’re getting. Lots of different things I’ve heard from people. So, this is a small excerpt in my book and it’s titled We Are Not Broken.

“Society often perpetuates the notion that experiencing uncomfortable emotions implies being broken and that necessitates fixing us." So, I don’t know if any of you have experienced this but if you reach out to somebody or you say you’re having a hard time, have you felt that they need to jump in and fix you, that they need to jump in and make it different, okay. That’s because they love us, but we are not broken. "We are not broken, and this mindset carries a negative connotation as many individuals criticize themselves for simply having a natural response to challenging circumstances."

"As humans we don’t break, although we may be experiencing deep hurt during life’s changing traumas. These are not conditions in need of repair. Instead we must allow ourselves to feel the emotions such as sadness, anger, fear, and uncertainty by inviting others in for support. This is a practice which helps alleviate the sense of isolation.”

So, what I’d like to maybe open it up a little bit is talk about that experience of having these emotions that are very, very natural. Sometimes people get accused of. "I’m surprised you’re not feeling worse than you are," or "Wow, I’m surprised you’re having such a hard time." "I know my neighbor who had stage IV. You’re so much better off!" and all these kinds of things that come at you.

I would love to hear from you or any questions from you or any comments from you, how have you navigated what comes at you and how have you navigated having experiences like this, because again…and I’ve watched very well intended medical people say, "Oh my gosh Mrs. Anderson this is treatable. Why are you having such a hard time?" Or, "I’m surprised you’re having such a hard time," or whatever that may be and I would love to hear from people how you’ve navigated this because I think this is really an important distinction that I want to make is that in this space of both, and how great this is that it’s early-stage, there’s several emotions that can be experienced.

Would anybody be willing or does anybody have the need to kind of interject right now anything that…and I think either Melissa or our moderator behind the scenes is going to be…

Andrea: Yeah, I just took myself off mute. I’m happy to join in and share my experience. So, all of what you said I’ve experienced all of what I think my friends and family claim to be positive and hopeful feedback, is you look really good in spite of all of your side effects, or even with my doctors and their nurses after getting lab work done, I would discuss my side effects, and you know how it’s been affecting my day-to-day routine and I’d always get these odd looks from them as if it’s a surprise I’m having these side effects, which can’t be uncommon given, you know, the situation that everybody goes through when doing chemo, and I’m actually in preventative chemo treatment right now.

I had breast cancer stage I breast cancer estrogen-progesterone positive and it was removed and everything. All the margins were clear. Then I had an Oncotype test which came back with a diagnosis of I have a 51 percent chance of recurrence, which is why the chemotherapy was prescribed as a treatment.

Typically, after breast cancer surgery you would go through radiation which was the plan for me originally until I got the results of my Oncotype test. 

So, yeah, it’s been challenging because everybody wants to be helpful, but they really don’t know how to be helpful. And they don’t really ask you how they can be helpful. That’s part of the problem. No one really asks you what you need. So, for example, after chemo, I just completed my third cycle of chemo, and pretty consistently after every chemo session for the first week to two weeks I felt really badly. Just various side effects that I was dealing with and just not well, not in the mood for company or companionship. I just wanted to…I was tired. I was fatigued. I just didn’t feel well, so I didn’t want to be around other people. 

Not to mention you’re immunocompromised, which seems to be an odd thing for anyone to believe when you tell them that. So, I didn’t really want anyone’s company while I was not feeling well and…but the constant barrage of daily, "How are you feeling and you know, how can I help?" It’s like, I’ll let you know when I need something. Leave me. Let me rest. Let me recuperate and when I’m ready to chat and find, you know, any company, I’ll reach out but really no one goes through the…they don’t really listen to you, and I’ve had repeated conversations with every member of my family basically the same thing every time I go through chemo.

It's a barrage of text messages and calls and "How are you. How are you feeling? How are you feeling today?" And it’s tiresome. Like sometimes you just want to have a normal day and not talk about how you’re feeling or not talk about your treatment.

Kelly Grosklags: Well, Andrea I’m so grateful you brought that up and you said something that I wanted to address today is about this fear of recurrence or the talk about recurrence and I know the Oncotype testing as a 51 percent coming back is certainly going to change kind of your follow up treatment, but I’m really glad you brought that up because that’s something that I see is one of the greatest robbings of enjoying life for a while after getting back to…now we titled this the different normal. 

I have learned in my work with people with oncology, in oncology or in grief work or in trauma work that the new normal doesn’t necessarily apply to a lot of people because there’s nothing normal about some of the experiences that people have. If it works for you that’s great. I tend to look at it as the different, is the different. Is that we’re living in a time that’s different. So, whether that…because it’s not normal to be walking around every day wondering if you’re feeling this pain because it’s come back, or why are you tired today?

Maybe you’re tired because you stayed up too late. The average person who hasn’t been through this kind of trauma or been through this experience would think, oh, I just stayed up too late. That’s why I’m tired. But for many people that have experienced a diagnosis of breast cancer, or any kind of cancer, but breast cancer is what we’re focusing on today, the amount of activation or triggers that can happen when a physical symptom can come into the body. It’s that constant surveillance and that’s what we know…that’s why I have put a lot of effort into realizing that PTSD is actually a thing.

Andrea: Oh absolutely. I agree with you wholeheartedly.

Kelly Grosklags: And there’s a, I think there’s a…it was either an article that I wrote — Melissa put it in there — but I think there was a podcast that I was interviewed for about PTSD with breast cancer because what ends up happening is people can become very hypervigilant. People can become kind of short on nerves so to speak. Very hypervigilant where surveying their bodies constantly. Even things sometimes might scare people more easily or might…you might feel more short with people. You might kind of react more quickly. You might have nightmares. You may have nightmares about recurrence. If you hear something on the news about something, anything related to breast cancer it can infiltrate into your entire day.

And so, I think what’s really important with all of this, so what do we do with this when it’s happening? Well, first of all, we want to find trusted people. This is a beautiful area in these meetups or in the support groups is to be able to say this out loud because the last thing I want is anybody feeling like A. they’re broken. There’s something wrong with them. Or they’re the only one experiencing this.

When you’ve done this work long enough even though everybody’s experience is unique there’s similarities to it and that in itself has the healing potential to know that you’re not the only one and that you’re not alone and I think that that makes a really important thing but you have to have the courage to say it out loud, and I think that’s what’s important is you may have family, like Andrea said, where they want to jump in and they want to help and they want to take care of us.

That’s important. Right? That’s important that we recognize they may be doing the best they can. Now if we’ve had multiple conversations with them and they don’t listen to us, that’s when maybe we have to set boundaries. Sometimes the best communication is through email or text versus verbally. It’s exhausting, as you pointed out Andrea. It’s exhausting to constantly be having the same conversation over and over again.

Now, on one hand you’re saying it’s exhausting that people say what can I do for you. On the other hand, I hear from a lot of people no one asks.

Andrea: There’s a combination of people that want to intervene and like you said earlier, fix the situation but really I mean I think in this case for me, my personal experience, I have never had anyone ask me…what can you do is so broad versus "What do you need me to do?"

It’s probably a matter of semantics but like I’ve had to…with certain family members, you know, I’ve had to tell them that I really don’t want anyone’s company while I’m trying to recuperate because I don’t know how I’m going to be feeling and I know I’m very irritable, and I am in my own space and having to have someone here that normally…I live alone, so having someone in my space on a regular basis is more nerve wracking and inconvenient for me because I can’t relax. 

I can’t just…if I’m feeling tired and I need to lay down and take a nap, I have to worry about someone else being in my space. I’m also working during my treatment. So, there’s that, you know, that issue as well. So, and I just, I want people to feel like that’s… when I need someone or when I need something I will reach out but they’re still constantly asking, you know, what they can do and yeah I’m very grateful that I have those people in my life but it’s just, it’s very hard to go through this with people who don’t know what this experience is like.

Melissa Jenkins: Thank you, Andrea.

Kelly Grosklags: Thank you. I want to highlight something here that Laura said because I think it’s also important and Raina followed suit. When your hair grows back. Now also there are some people that don’t lose hair, obviously we know that, in treatment. They may have had chosen a lumpectomy with radiation and yet they have a lot of sexual side effects from the tamoxifen or whatever they’re on afterwards and they have all these kind of what I would call hidden struggles. You go out when your hair and you don’t have hair and it’s a little more…people kind of relate to that, but Laura you bring up a really good point, is so glad it’s over for you.

You know, I think again where I really want if there’s nothing else you take away from today, is I’m hoping you’ll take away that we can create space for several things to be true inside of that space. Yes, it’s nice that the treatment the active treatment part may be behind you. And you still have to go every three months and walk into that place of trauma, if you will. For some people they have follow up mammograms. For some people they don’t have mammograms. For some people they have tumor markers. Some people they don’t. 

Whatever it may be, but I think what’s important is rather than apologizing for how we feel, is to allow how we feel. And that people will say, "I’m glad it’s over for you." That’s more about them than it is about us. It’s more about them than it is about you, I should say and it’s about them wanting it to be over for you. Them not wanting you to feel scared. Them wanting this over for them. Maybe they’ve been losing sleep over it. Maybe they’ve been very anxious about it.

But if you continue to feel anxiety, panic, different things post-treatment, it’s a really good idea to start looking for a therapist because I would say…I wish in some ways it was mandated in this country that when people get diagnosed with cancer they’re automatically given a stipend. Because I…and I’m not saying it has to be long term therapy but somebody objective that can listen to your story as often as you need to say it.

I also know that some of my patients have been scared to celebrate or feel too hopeful because “what if?” is always this question and the problem is too as great as groups can be there is a risk that you’re going to be exposed to somebody that’s had a recurrence and then that changes your whole feeling of, okay, what if that becomes your story. Now one of the things I can…that I always say to people no matter what they’re struggling with and what they come to therapy for, is how do we stay grounded in the now? How do we stay grounded in what exists today?

"And today the truth is…," and then you follow it up. "You are cancer free,"Your treatment is behind you," "You’ll go again in three months." And so, I think it’s very, very important… what are your techniques to keep you in the now? Is it prayer? Is it breath work? Is it walking in nature? Is it reassuring quotes? Is it asking for reassurance from a provider? Is it maybe rereading your last My Chart or your last patient portal that talks about there’s no evidence of disease. Things are looking good. What is it to keep you in the moment?

Also, we have to remember that the unknown — which is the future — is so scary for all of us. We as humans don’t live with uncertainty very well. And again I think one of the things and if any of you read my first book or listened to any of my podcasts will know that I talk about the unknown will become our known when we get to it and at that point there will be people to help us when we arrive to the unknown.

And it’s really important also everyone I think if you can get into a practice of even writing down what are you scared of, and then write down after that what are you hopeful for. Those are beautiful examples of visual of how two things can live in the same space. But sometimes we don’t allow ourselves to express what we’re scared of because we’re scared to give it words. What we do know is if we give things words they can diminish the intensity of it. On the other hand, when we give things words they can have power, also. So, what are you hopeful for, but what are you fearful of?

And also, life is happening around breast cancer as well, right? Like life happens. You may have issues with your spouse. You may have issues with your children. You may have financial concerns. You may be going to get a degree in school right now and you’re really stressed that you may not have the energy to complete this degree. There are a lot of things that happen outside of the cancer experience as you know better than anybody.

And so, the fear may not only be cancer related and that is absolutely fine too, but possibly this might help you, getting into the habit of a journal. Sometimes people say like I don’t like journaling, that’s too this. Okay. I’m talking about two sentences a day. What am I scared of? What am I hopeful for? And then some people add one more thing when they go to bed, what am I grateful for, and it has a mindset. And then to go back and read that journal throughout the year is pretty profound. 

Many times, the things people were the most scared of didn’t come true and that in and of itself can be very, very healing. Or if it did come true, they’ve gotten through it, and they’ve been supported through it, which is an amazing thing.

Raina; "Laura, I relate to that. I’ve completed my treatment and the congratulations you are done comments make me feel so lonely because I don’t feel done. I’ll carry this with me forever. I don’t have suggestions of what to say but I just want to tell you that I can relate."

Thank you, Raina for saying that. I think that’s important that Laura knows she’s not alone. I will say Laura and Raina I’ve heard those…and I’m sure Melissa you’ve heard this multiple times, hundreds of times, that, "Yes, yay being done with treatment. It’s a wonderful thing and...." You know if you went into the breast cancer experience with traumas that were unhealed, such as relationship issues, abuse issues, grief issues, other medical issues, whatever that may be. If you went into this, those are going to rear their heads right now unfortunately because anytime we’re more vulnerable, we can tend to feel more overwhelmed with things that need to be healed.

And so, if you’re thinking, why is this coming up right now? This is a terrible time for me to be, you know, thinking about the grief over my cousin who died. It’s oftentimes what will happen when we’re a little more vulnerable because the mind and the subconscious go, oh, she’s at a place now where maybe she can heal this. Let’s bring it up. So, I just say that because I’ve worked with several people that are like, I have no idea why this is coming up now. This is terrible timing, and I’m like maybe not. Maybe you’re at a point right now where you’re more open and willing.

Okay. Let’s have other…thank you, Andrea for bringing that up. Can we have other people? Here’s Jessica.

Melissa Jenkins: Susan said, I don’t quite know how to get back to living fully. They’re better but still the full living is kind of hard. I’m just shortening that.

Kelly Grosklags: So, when I hear that, when I hear people say, "How do I get back to living fully?" I hear a lot of pressure on themselves, when people ask me that and I would have to ask the individual…I have to ask every individual that says that to me, what does that mean to live fully to you? That means different for everybody, but I often hear a lot of pressure coming from people and shame that they’re not where they should be. They can’t go to the gym. They can’t go to this. They can’t go to that. 

And so, again when we look at the difference and we give ourselves grace for living the different, it’s not going to look like what it looked like prior to you getting diagnosed. And I think that’s the important part to remember is that that’s not possible. Now it doesn’t mean we can’t go back to the things that we did. Maybe you go back to work. Maybe you get back into your pickleball league. Maybe you go back to some of those things, but you’re a different person than when you were when you were pre-diagnosis, and I think we have to create room for her or him and allow ourselves to embrace some of the differences.

There might be things about your previous life that you don’t want to embrace again, and this might be an opportunity for you to do it differently, as well. Maybe you were someone that kept quiet all the time and never spoke up, never used your voice. Maybe that’s going to look different now, but I would ask Jaclyn and I would ask anybody is what does it mean to go back to fully living. What does that mean for you? And then does that mean pressure on like I need to be exactly how I was? Because what we do know is some of these hormone blockers I mean the side effects are very great for some people. 

Sexual side effects, lots of different…you know, fatigue, skin issues, hair issues, you know, there’s a lot of different things that can come back. Fatigue being one of the bigger ones. Joint pain. So, if you’re thinking you’re going to go back and teach CrossFit five days a week like you were prior to that, you might be shaming yourself for not being able to do that. And so, if you do something at 50 percent does that…what does that say about you? That says that’s amazing you’re doing something at 50 percent because that’s higher than you were able to do that likely in treatment.

There’s not an easy answer to that question, how do you go back to living fully? I guess I would ask what does that mean for you? And please give room for creativity to add things to this, which I think would be wonderful. 

Melissa Jenkins: Kelly, I just want to go to a comment that Jaclyn had posted. There’s some conversation about…and also Macy and a few others have remarked, frequent reactions from friends like, "Oh, my aunt had that and she died," or "My grandma had that and she’s fine. So, why are you so worried?" That’s one part of it, and then also people will also say, "Well, you’re in remission...", and is there kind of a comment that one can respond with that you would recommend. So, to make it so that not that they just feel like they can check you off but that more, full rounded answer around that.

Kelly Grosklags: You know, first of all, I want to apologize to everybody that society or the human race thinks they have a right to interject everything into your life. I mean it’s…I see that all the time with the grievers that I work with. We know that, "Oh, well my grandma had it and she’s just fine,," is meant to make you feel great. "My cousin who had it died," I’m never quite sure why people choose that as something to say. That has always baffled me and a lot of times when people say things like that, I, when I’m working with a patient or a client in therapy I really empower them to not be confrontational but to be direct and just say, "That was not helpful." 

Now I also want to be very clear that not everybody deserves to hear your story. And so, when people are asking you, we know…is it the checkout person at the grocery store kind of question? Or is it truly they want to hear? If you don’t think that they truly want to hear I would encourage you not to invest energy into telling your story. Not everybody deserves to hear it. For people that can provide us with safe spaces and soft landings, those are the people that can hear the true stuff, but if people are just like, "Well how are you doing? And are you in remission?" You know, I think one of the things that can be very helpful to say to that is, "Right now I’m done with the treatment option and I’m very glad that there’s no evidence of cancer," you know, or whatever feels comfortable for you.

I do think that remission question, it’s kind of an old-fashioned word anyways in cancer care but a lot of people still use it, but what they don’t realize is a lot of people still have treatment, especially with estrogen positive and different tumor genetic makeups. There are still people that have ongoing treatment for five to 10 years. Even if you’re not taking anything, going to the doctor, to an oncology clinic every three months can be incredibly traumatizing. And then the other side of that is having them tell you you don’t have to come back for five years or one year or three years can feel very scary.

So, on one hand it’s scary to go. On the other hand, it’s scary to not go. And I think again that space for all of it to feel all of it is really important and not apologize for how you’re feeling, and it’s okay to laugh at a dinner party and go home and still feel scared because you are having a weird ache that day. But when the people laugh, society assumes it’s done. It’s done. No more checking on her. She’s fine. And you know, a lot of people have used their social media platforms to educate people and say things like, you may see laughing but also on the other side of that is this and that can be a helpful way.

Some people have a Caring Bridge. Some people use Instagram. Some people use an email blog. Some people do videos. Whatever feels comfortable, but I will also say it gets exhausting to constantly be educating. It’s okay if you don’t want to. It’s not a given that when you’re diagnosed with cancer you need to become a CEU or expert for everybody and give them continuing education constantly. Sometimes when people say, how are you doing? it’s maybe fine because you just know it’s the grocery store question version. It’s the thing we ask when we’re passing somebody in the hall at work. How have you been?

Also, another helpful thing that you may want to offer to those people supporting you…sometimes when I’m supporting people like in my personal life, I’ll say to them, "Are you needing help with advice right now? Or are you needing somebody to just listen? Are you needing somebody to help you solve some concerns? Or do you just need me to listen right now?" And then when people are listening and hope they’re listening to you to hear you, and not listening to respond to you, because that’s very different. When people are listening to us to hear us, they’re really tuned in to what we’re saying. 

When they’re listening to us to respond, they’re half listening and half ready to jump in and that comes back to the feeling like we’re broken. They have to fix us. They want to make it different. Again, I don’t believe people are malicious. I think when people say things like, their cousin had it and they died of this. They had the same thing, they died, that’s kind of stupid and I never understand it and you know it depends on where they catch you. 

Sometimes you might say to them, that was so stupid that you just said that. What the hell are you thinking? Or you might go away, internalize it, and feel really bad about it, and that’s where again I want you to find your people that you can let that out or you go to your journal and you write that out. Things come out of people’s mouths sometimes before they even think about them, but they can have lasting impacts. Also, though, if you’re going to let those things land, let the things land that bring you comfort, too. It’s really important.

Melissa Jenkins: I like how Masie said, "That’s more about them than it is about you." Two other, a few other things…a bunch of things coming in, but from Janelle, sort of the flip side of people asking you what can they do for them, she was saying, you know, it was actually all she could do to manage herself, her life, her treatments, and not have to manage what they need to do. So, now she’s gotten into, just drop a meal. Don’t even ask. Just…there’s two sides to this.

Kelly Grosklags: That’s right. That’s right. And you know, in all fairness to the people out there, everybody is different in this, and also you have the right to need something on Monday that feels very different on Tuesday. So, if you really wanted to talk on Monday, maybe Tuesday you just want to be really quiet. And I think that’s really an important thing that when people say, "What can I do for you?," it’s okay to say, "I don’t know right now," but my hope is that people, you know, that they do check in, and I know for some that can feel exhausting, but I will say more often than not, people get exhausted with okay, and they’re like well, "What do you want to eat?"

Well, the only thing is if you have an allergy tell people that but, "Can you please figure out the meal that you’re bringing me? I don’t want to figure that out." And I’m hoping when people bring a meal they don’t expect to stay and eat it with you unless you invite them to. If you invite them to, that’s another thing. If you say you have a seafood allergy and they bring shrimp cocktail, that’s another thing. So, I mean there’s these…I’m kind of being sarcastic, but I’m thinking about all these things that have happened over the years with people that are like, okay they clearly didn’t hear you.

But again…and then you’re going to get a lot of meals in the beginning, and then when you’re really exhausted after treatment which…

Melissa Jenkins: Which these folks are. Most of these people here, yeah.

Kelly Grosklags: Yeah, when you’re after treatment, what’s when you need the meals. That’s when you need the meals, and the meals come the first week after somebody dies. You know when they need the meals? Six months after they die. That’s when they need the meals because that’s when the reality is happening. Now when you go through treatment, you’re in the doing phase. Okay. You constantly have somebody, you’re checking in on. The infusion nurse, the radiation oncologist, your oncologist, your wonderful nurse navigator, whoever it is. 

After treatment and you go to those three months can feel very, very scary. It goes from doing to reality. Reality of, "Oh, this just happened." Many people, especially people that are get it done kind of people, project managers, whomever, they’re in it. This is it. They’re researching. Got this done, and then that kind of, what just happened? That’s when the anxiety can really step in. 

So, if you’re surprised that you had more anxiety and possibly even depression after treatment, I want to tell you it’s incredibly natural. And I if I had the luxury of seeing people during treatment, I would say I’m not saying this to scare you. I’m saying this to empower you and to support you, that oftentimes, you know, that ringing of the bell and all of that, all the excitement that happens, there’s a lot of anxiety and actually some of the chemos and if any of you are on steroids, can exacerbate panic, anxiety, insomnia, depression, and these are things that we really…instead of people just saying, go watch a funny movie, go put on some lipstick, go do whatever. I really want people to be talking openly in these kind of groups.

A lot of oncologists and oncology practices are getting better about mental health, but it’s not, I have to say it’s not necessarily during the treatment. And I don’t say this to scare people. I say this to let you know this is a natural thing that happens, and I think the body just lets it in as we can take it, take care of it and deal with it.

Melissa Jenkins: There’s some people who have remarked, Kelly, that having to put on the usual face to the outside world after they may have neuropathy, they might have still brain fog, they might have…and they’re rocked to the core, as Jacelyn says, by the disease, and that’s one set of comments. And the other is really about feeling alone, being left alone and feeling ghosted. So, I just wanted to see if you could address both of those areas.

Kelly Grosklags: The feeling ghosted there’s also a podcast that I did with Breastcancer.org. You know there’s so much grief that happens with a diagnosis. So, I talked earlier about trauma. Grief isn’t just about death. The grief of loss of self, loss of relationships. I would say 98 percent of the people I’ve worked with have told me they have been absolutely devastated over people they thought were going to show up that didn’t and in the same space, sometimes pleasantly surprised the people that did show up. 

Now I see someone here talk about friends that have invisible disabilities really get it. Yeah. When you look too good, that’s a risk factor, right? I mean especially that old…there’s something about when people have hair. Society cannot equate it. Or people that may have horrible hip and joint pain but they’re not using a walker, or people that have horrible depression, but physically they might feel okay. Now a lot of my patients by the way have said to me, their bad mental health days are worse for them than their bad physical days, and I understand why, because society doesn’t encourage that.

They do not encourage you to come out and talk about you’re having this horrible irritability. You’re having this horrible panic. You’re having this horrible anxiety, but you can go out and talk to them about maybe your nausea or headaches that you’re having, and they’ll go oh and they can relate to that. Mental health still scares people, but I hope that we can do a better job of naturalizing that and normalizing that for this experience. That is treatable, and it is something sometimes people need to take medications, but I want to let you know that we have seen in that brain fog, that chemo brain, is something that can last for a while. 

People will say am I going crazy? People have been accused of going crazy and I think it’s just really important to find like-minded people. It doesn’t take a lot of people. My colleague and I, Brian Piot, we do a lot of talking around the States, and the one thing that we will maintain is that it takes one person to make a difference. One person. We live in a land of social media right now and, "How many followers do you have? And how many likes did you get?" And all that kind of stuff somehow becomes important, but I have felt very lonely in a room full of a hundred people, but if there’s one person that maybe really listens to me there can be a hundred people in there but it’s the one that makes the difference.

So, find the person or group that you can talk to about if you’re struggling with your mental health, because I don’t know that we give enough credit to what is chemotherapy do to our brain chemistry? What do steroids do to our brain chemistry? What do the hormone drugs blockers that they’re giving us do? What do the aromatase inhibitors do? What does the trauma do? What does the lack of sleep do? What does the change in nutrition do? What does the weight gain do? What does the weight loss do? All these things that can, that can impact us. But I also want to say, on a hopeful note, I’ve seen many people post treatment that were struggling initially learn how to integrate that struggle and still be able to reclaim back joy and happiness.

What we do too often in this society as human beings, is we wait until all of that goes away before we think we can be happy, before we think we can start living life again. And I want to say that there’s always going to be something that every one of us is probably going to be trying to maneuver and manage, but that I have seen people be able to create space in their life post-treatment, and you know when you hear the words, "You have cancer," you’re thrown into something you didn’t ask for and generally you have a barrage just this…all these appointments and hopefully it happens fairly quickly. But you don’t really have time to think about how has this impacted your life until you reflect back on the experience.

And so, this can be a really vulnerable time for people, but I do want to leave you with the hope that I see many people be able to reclaim and integrate this different, this new different into their lives. Not waiting for all of the discomfort to go away from the diagnosis or "Okay," it’s not either/or-- "Okay, either I’m anxious today or I’m going to be okay and happy." No. It’s both — can be anxious and ways to manage the anxiety and find joy in that same space.

So Sue says, "During my treatment, my brother-in-law dropped dead at work. My mom’s sister died. The next day my best friend died from stage IV ovarian cancer. My mom was diagnosed with Alzheimer’s and the last week another friend took her life all while trying to cope with severe fatigue post-radiation."

Melissa Jenkins: So, we have a number of people who have said, you know, managing all sorts of different traumas before breast cancer, during the treatment, and after the treatment, and how that compounds and how much harder that makes to go out into the world.

Kelly Grosklags: Well first of all, Sue, my goodness, I’m sorry. Kind of as I was talking about, you know, there’s grief from a diagnosis, just period. It’s a loss of what you knew. The loss…it’s a loss of life as you knew it. Okay. Then you add in all these deaths and different things and for people that have had multiple layered grief, loss, traumas, what I do say is that each one deserves its own attention. And so, we don’t…we don’t necessarily heal it all in like one little bundle and wrap it up. We need to address each thing. We need to name each thing and each thing....

Now some of these losses may feel different. Some of them may feel more horrific. I also want to be very clear with you guys that you get to decide how these things impact you. So, nobody else gets to say to you, well on paper I would think this would feel more difficult than this. No. How does it feel for you? You get to decide.

Shannon?

Shannon: Yeah. I just wanted to camp onto the thought process and, Sue, I’m so sorry as well that you had to go through all that. One of the things that has given me strength throughout the entire process I’ve been going through, is really just knowing how strong women are, you know, to go through all of this. You know, I was entering an elite group of extremely impressive women who have gone through this before me. The cancer itself is no joke. You know, the treatments for the cancer itself were no joke. So, to have to deal with all those other things as well, while no one would wish for that, of course, it’s I want to say it’s very impressive that you’re here today and you handled it and you’re handling it.

Kelly Grosklags: Yeah. I think women have said to me, I’m so sick of having to be resilient, and then I’m like I know but somehow we are. I don’t, you know…but you get tired of having to be, and I think that’s something a lot of people can resonate with. But one thing I do want to say is that I really want you to hear me in that you get to decide what things feel hard. People try to prescribe that onto us. 

You know, for some people I’ve worked with, their neighbor dying is much harder than their father dying. Their animal dying has been much harder for them than maybe human death. That’s not ours to judge. That’s ours to support. And people get to decide, and for some people even in the breast cancer groups, will hear maybe something that is really difficult for someone to deal with, is not difficult for another person to deal with.

There’s room for all of it. There’s room for all of it. And I think that we’re not in a competition here of who can get through this better and who can get through this quicker and who can get through this without side effects. That’s not what this is. This is about…and what I’ve noticed in these meetups is this is about showing up however you are and allowing people to show up how they are. And I think that can be one of the most healing things. And to be seen and heard and to not have to come here and put on a face and be like, "Yes! So grateful to be done. Isn’t it great? Everything is done. Isn’t that great? I know."

And all this BS out there about, "You better talk positively or things…negativity feeds the cancer." Dadadada. Are you kidding me? I have known the most beautiful, positive people, who are vegan, who do yoga every day, who are very spiritual, who have gotten cancer. And so, again well intended — "Think positively!" That’s great but that’s more about them needing you to think positively. Now yes, I believe in gratitude. I believe in a lot of, you know, telling yourself, self-love and that you’re worthy. 

I believe that, but I also believe strongly that you need to be able to say, "This blankety-blank day sucks!", and just have that land and not have to explain it or apologize for it and know that tomorrow is going to be different or tonight will be different, but today, right now, this sucks. And not have somebody correct you like a little teacher when you’re in first grade and say, "Now come on, missy, we need to think positively."

No. We need to think and express right now how we’re feeling. That’s what we need to do. So, my hope is each one of you has that person in your life, but I really do believe in the power of women…as Shannon was saying, I believe in the power of being seen and heard. I also know that where you’re at right now is not where you’re going to be in six months. And that things that are the hardest right now, the things that are happening to you right now, are the hardest because they’re happening to you.

So, it doesn’t matter if you’re stage I and your friend is stage IV. Your stage I is hard because it’s happening to you.

Melissa Jenkins: …or you’re stage II or III. We have a number of…

Kelly Grosklags: …you’re stage II or your stage III. Or if your mother died and she was 99 and someone else’s mother died and she was 30. It’s happening to you, so it’s hard and I think that’s what can get really hard is all the comparisons. 

Hearing you have breast cancer, is traumatic and I’m hoping you’ll take all the space for it. And then the people that didn’t have chemo, that’s a whole other thing, too, right? And that would be a whole other hour where we can talk about how they feel like they’re not deserving of coming to a support group.

Like what? Melissa and I would both shake our heads because it’s trauma. There’s nobody that gets by with a diagnosis like this that doesn’t have an implication or doesn’t suffer mentally.

I have time for one more question. I know there’s a lot of…I’m sorry. I haven’t been reading the chats. 

Melissa Jenkins: I think there’s just a lot of gratitude and actually, Kelly, I think you had a hard stop. So, I don’t want to encourage too much.

Kelly Grosklags: I do but I’ve got one minute. If somebody has just got a burning question.

Melissa Jenkins: Burning here anybody. 

Kelly Grosklags: I’m sure everybody knows about your podcasts Melissa. That’s just…

Melissa Jenkins: Yes. We’ve been adding that. We’re adding resources here, and people continue…this is a one off, just a special meetup, but if there seems to be that much interest, I’m sure that we could convince Kelly to come back and make more of this and we will be happy to do this. Thank you.

And we will continue to of course run our, our weekly meetups. It’ll all come to you in the email that we follow up with. If you need to come to a Bonded by Breast Cancer groups many of you are already coming or Going Through Treatment, if you’re still in treatment, or need that we’re here for you and we’re listening and we appreciate all the feedback. 

I might send out a survey just to get more feedback. So, be aware of that, too, and please fill it in because we really want to hear back.

Kelly Grosklags: I’m so grateful and you guys can stay in touch with me too. I think they put it on but I’m on Instagram at See My Grief and Conversations with Kelly on Facebook, and then I have a website. So, please stay in touch with me.

So much light to you and hope and authenticity. Be who you are in where you’re at and maybe I’ll see you at another meetup if I’m honored enough to come back and talk. 

Thank you so much to all of you and thank you to Melissa and to the moderator in the back room wherever they're at moderating this. Just so grateful. So, peace to all of you and take care and we’ll see you again.

Thank you for listening to The Breastcancer.org Podcast. Please subscribe on Apple Podcasts. To share your thoughts about this or any episode, email us at podcast@breastcancer.org, or leave feedback on the podcast episode landing page on our website, and remember, you could find out a lot more information about breast cancer at Breastcancer.org, and you can connect with thousands of people affected by breast cancer by joining our online community.