Feelings about Cancer and Mortality
When people are diagnosed with breast cancer, dealing with the news and getting through treatment are, understandably, the focus of attention. Once treatment has ended, there is more time and space to process emotions, to reflect on what has happened, and to imagine what may lie ahead. People we spoke with told us about how this felt as they faced the future as individuals living with breast cancer.
Life after Treatment
For many people, finishing treatment brought a sense of relief because they were no longer locked into a schedule of repeated treatment and recovering from treatment. This new phase felt to many like a chance to finally begin healing, though as Sally noted, “you just have to give it time.” For others, it brought anticipation: as Sharon put it “After a cancer diagnosis, it’s kind of like a halftime. And you get to come back on the next half of your life and play it the way you want to.” Some people got busy right away doing, as Peggy put it “the things I want to do...not worry[ing] about saving for a rainy day, because that rainy day might never come now.”
Other people we interviewed said they felt lost, or depressed, once treatment had ended. Some had trouble adjusting to the “void” left when all the activity associated with treatment was over. Others found themselves with more time to really think about what had happened to them and what the future might hold. As Casey explained, “you're used to doing something, and dealing with it...and then it's gone...that's the roughest part...‘Now what do I do?'"
Janet S. was blindsided by deep depression after her treatment ended.
Janet S. was blindsided by deep depression after her treatment ended.
I wished I had known to expect that deep depression. That blindsided me. That absolutely blindsided me. It’s not a normal state of mind for me, and that, was the, I mean, I've had other, I'm like anybody else, I've had other tragedies in my life. But that was the most, that was the darkest, most depressed, I want to say void. I'm not even sure that's the right word. I just felt like I was in the deepest, darkest pit. I felt like I was in a black abyss. Maybe that's the better way to put it. Because I couldn't see an end, I couldn't see sides, I couldn't see a top, I couldn't see a bottom. It was just all-encompassing. And I have heard since then that is not uncommon.
---
Oh my god, it blindsided me. And of all my wonderful caregivers, and, or medical team that I had, nobody told me about it. So, when I started experiencing it, I kind of had a what the hell's going on thing here. And I did a lot of, I mean, you know, I started feeling sorry for myself, and the “Why me?” And, you know, I did all the things that you do when you get into a depressed state, and it was not a good place. It was not a healthy place to be. So, a little bit of warning for that would've been nice.
Becky acknowledges her difficult emotions and then moves on.
Becky acknowledges her difficult emotions and then moves on.
It was actually right when I was done with everything and I was surprised how I was feeling. So, at that point I reached out.
---
Asking for an appointment with a therapist, he gave me some ideas for how to deal with like, when the worry really crept up. The main one was, just acknowledge it and give it its moments and then move on, versus just trying to keep stuffing it down to only have it keep creeping up. So, that was good advice that's worked for me.
Feeling Pressure to Stay Positive
While depression after treatment was a challenge for some, others struggled with a sense of pressure to stay positive. Ronnie acknowledged how this felt out-of-step with her own emotions: “you feel bad for being scared….But you have to recognize and be attuned to people’s fear.” People we interviewed had to work hard to give themselves permission for a range of emotions, or to deal with pressure from loved ones, who did not want to consider the possibility of bad outcomes.
Sally gives herself permission to “feel like crap” if she wants to.
Sally gives herself permission to “feel like crap” if she wants to.
When I was talking about how supportive my husband was, which he was very supportive, but it kind of brings up this thing that, I really struggled with, my husband's like, “you're going to be fine. You're going to be fine.” He was just, that was his mantra. And I would get so mad at him. It’s like, “you don't know that I'm going to be fine.” And, and I felt that way a lot. People were like, “stay positive.” And I was like, “well, I'm not. So,what does that mean? I'm going to die because I'm not positive?” I mean, it, things that you just don't anticipate these feelings of like, “well, I'm sorry, but I'm feeling pretty shitty today, and I'm not feeling very positive,” and it felt like you were going to be punished for that, because you weren't staying positive. So, finally I have a friend who's a psychotherapist, and she researched and found this study they had done, that it didn't make one hill of beans difference if you were positive or felt really lousy about your experience. And I had that up on my refrigerator to give me permission to feel like crap. And that was really very helpful to me.
Kerry describes her struggle between light and dark feelings.
Kerry describes her struggle between light and dark feelings.
There were times where my mind would go to the negative. What if I do die? And my partner would say, “Stop. Don't go there.” You know? “That's enough.” Like, we’re, you're going to fight. And my sister said the same thing. Like that's just not even an option. I would say, “Well, what if it is? I mean, what if that does happen? We need to talk about it.” Or I wanted to like have something planned out just in case. But at the same time, you just don't want to go there, because you can't let yourself go there. Because if you do, then what if it does happen? You know what I mean?... I'd rather just stay in the positive and stay in the light and think that way.
Fear that Cancer Will Come Back
In the wake of diagnosis and treatment, many of the people we spoke with told us that fear had become a lasting part of their lives. As Victoria explained, “when I feel pain or sometimes when tired...the fear is that cancer is back.” Or as Debbie put it, “I don't think the fear of it, the thought of it, ever goes away once you've had it.” Peggy said she’s gotten a lot better, “but in the back of my mind it's always there....Every time you have to have a scan...you're afraid that it can come back.” Alison noted that once treatment is over, it feels like there isn’t much to do except “wait and see if it's going to come back,” which can loom overhead “like a black cloud.”
Amber sometimes imagines the worst when she’s not feeling well.
Amber sometimes imagines the worst when she’s not feeling well.
It's the fear of reoccurrence. So, I had my last mammogram in July, and it turned out good. But at first, they found a spot that was suspicious. So, I went through the emotions again of, “Okay there's something there.” But we did an MRI, and everything came back clear. But the, the fear of the reoccurrence. You're not feeling well, or you have a side effect, you think, “Is this cancer?” And I've never been a hypochondriac. If I was not feeling well, I'd wait to go to the doctor. I would never think that something was bad. And now your mind goes to the worst. It stinks, you know, because it is on your mind, and it's never gone for good.
Facing and Coping with Mortality
Breast cancer is a potentially life-threatening illness; people diagnosed with it have to face the possibility of dying from the disease. Some of our participants described how this felt. For Nikki, that emerged in “weird” ways–like when she went shopping for clothing and found herself wondering, “do I buy it? Or should I buy something that I know…my younger daughter will wear.” Peggy said cancer “changed her whole life plan,” because she was diagnosed with metastatic disease in her 30s and doesn’t know how long she will live.
Kim finds a way to make peace with the possibility of dying from breast cancer.
Kim finds a way to make peace with the possibility of dying from breast cancer.
When I came home, and I was howling after my diagnosis, I was afraid of dying. I was kind of obsessed with, “oh my god, am I going to die?” I had a lot of anxiety suddenly, “Am I going to be one of those one out of four people who dies in the first five years?” And so, I wrestled with that for a couple of years. And I decided I'm not going to look away from that question. I'm not going to just assume the best, because I knew that I had a 1 in 4 chance. I can assume the best. Why not? But still, I knew it was going to be there, that anxiety. So, I thought, I just got to deal with it square on until I find some peace with this possibility.
Precious wonders who will be there for her at the end.
Precious wonders who will be there for her at the end.
Another aspect is, for me, as a single woman, I have a close family, my sisters and my nieces and nephews. But I deal with, you know I wonder, because I have visited my friends who've had metastatic disease or whatever, and I've visited them in hospice, I wonder, for myself, I struggle with the issue of, who's going to be there for me kind of a thing. Because I don't have a husband or children, I do struggle with that part. Like, if it was just a matter of going to hospice, you know, I dealt with my mother in hospice, so I know the issues related to that. But I was there for her. You know, and so when you, you know, when you have, when you are alone, per se, or you live alone and you are alone with metastatic disease, that’s an issue that you struggle with is the issue of who is going to be there for you when you have to be at that end stage. My friends that have had metastatic, they had a husband or children or something like that. And that's who dealt with them for their arrangements and all like that. Now, I have a last will and testament. I have the Five Wishes. I have a will. I have all these things. I have people in place that will do all this. But I'm talking about, you know, when you're there in that bed in hospice, you know, who do I look up to see? And that's what I struggle with. Even though I'm close with my church family, my regular family, all like that, you know, that's what you struggle with. I'm close with my God. And so, I know that, ultimately, He's going to take care of that. But humanly, you wonder, you know, you deal with the loneliness of that final hour, those final times.
People found many different ways of coping with the possibility of dying from breast cancer. Some drew on religious faith or other spiritual beliefs (see our summary on Religion, Faith and Spirituality). Others simply chose to accept the uncertainty. As Amber noted, death is not unique to people with cancer: “life is life, and nobody makes it out alive.” Or as Alison put it, “will it kill me? Maybe. Maybe something else will.” Many people talked about the importance of engaging with life rather than focusing on death. Merle doesn’t want to “live out of a place of fear.” Susan said, “every day is a gift...Don't just say it but believe it.” For Kim, “the moment right now takes on the special brilliance....I'm just happy with the days that I have, because I know they're not given.”
Carrie doesn’t want to drop out of the world.
Carrie doesn’t want to drop out of the world.
I am a firm believer in I'm a person who's living with cancer. I don't feel and have never felt like I'm a person dying of cancer. I still feel good. And I know one of these days I'm going to wake up and I'm not. But, you know, people are like, “You're still working?” And I just feel like, what else would I do? What else would I do? Sit home? First of all, it's not economically feasible, because I can still work so I can't just tell the government, well, I think you should just, I’ve got a really bad diagnosis or prognosis, so you should just pay me to sit home, even though I can work. So, you know, I'm not going to do that. And also, I don't want to drop out of the world.
Sharon chooses to make time for joy.
Sharon chooses to make time for joy.
Anybody who's gone through cancer now has to live with, am I going to get cancer again? And so,I don't want it to dictate my life. I don’t want that to be my main focus. Make each day count. It's too easy to get sucked into living life and paying bills and got to do this and got to do that. You've got to make time for joy, simple things like it were summertime. I didn't have any hair. I sat in the backyard where no one could see me. And a gentle breeze kind of danced across my scalp. I've never felt a breeze really dance across my scalp before because I have hair, right? It's a really cool feeling. And I was like, “Wow.” The little, tiny gifts like that, that I could find to be appreciative of helped a lot.
Reluctance of Others to Talk about Death
Some people we interviewed were frustrated that when those around them avoided talking about death. Several people found that the subject was taboo even in their support group. Kim described death as the “elephant in the room” at her support group. Discussion at Alice’s support group was “very much about medications and trials and side effects....I wanted profound conversations about life and death. And we're talking about what? Diarrhea?” Katrina wanted to find a group where she could ask “some for-real questions” about what her cancer means and how to talk with her family about dying, not “beat around the bush” with people she cares about.
For Amy, the possibility of death is like having a third person in her marriage.
For Amy, the possibility of death is like having a third person in her marriage.
It's kind of like having a third person in the marriage really. Because there's times that I'm frustrated if he doesn't understand something, and it's something that means a lot to me. It’s like, “why don’t you get this? When I'm dead, you're going to understand why this made sense.” I feel like I always have that sort of in the back of my mind, the timeline. And I don’t always know, I feel like he thinks I'm going to live forever, and everything's going to be fine. And I worry sometimes that I don't know if he understands. And I want to have a long timeline. I don't want my family to walk around like planning for a funeral. But then at the same time, we should probably have those plans made. And I can't have those conversations with him at all. I think it’s that he's in denial that those are things that we have to discuss.
Kim was troubled that her support group avoided talking about death and dying.
Kim was troubled that her support group avoided talking about death and dying.
I'm ever grateful to my group. But when I joined this group about a year and a half into my cancer diagnosis, I was looking forward to a place to talk about a lot of these fears and anxieties and fear of dying and wondering how other people cope with that. I've brought that up in the first group, and it was very clear people did not want to talk about that.
---
Even as people were getting sicker and sicker, we'd ask about their health status. But nobody, one woman, actually, there was one woman, the first woman to die talked about her likely death the most. But no one wanted to go there. And another woman, as I'm remembering the second woman to die, I remember her bringing it up with actually the leader of our group when we were just, the three of us were somewhere in the kitchen preparing some food. And the leader didn't want to talk about it. And I felt badly for her, because I felt like as a group, we were not able to support her. And I should have been braver or something now that I, thinking back, and should have said to the group, look, we got to, well, I don't know that you could do that, though, because people aren't ready unless they're ready.
“Making My Lists”
For many of the people we spoke with, facing mortality also had its practical side. Several underlined the importance of getting their affairs in order, for example by sorting out legal and financial affairs or cleaning out closets. As Katrina put it, “if I have to do my funeral stuff, I want to; I don't want my kids to have to worry about it.” Or as Amy noted, “I got rid of a lot of stuff...I want to manage what I can so that I’m not leaving a big mess for everybody.” Asante said she is getting her affairs in order because she believes you must “plan for your death when you’re alive.”
Precious has made plans for her death.
Precious has made plans for her death.
I've decided to-to cremate my body while I'm living. I filled out the form and with the, with the [LOCATION] Anatomy Board. And if you fill out the form while you're living, then the cremation cost is on the state of [LOCATION] and not on your family. And so, and you carry a card with you at all times that said, you know, “call [LOCATION] Anatomy Board.” They’ll pick my body up. They'll use whatever for a year. And then, after a year, your ashes will be delivered to your family member that you designate. But the cost of cremation and all of that will be the burden of the state of [LOCATION] while they're using your body, you know what I'm saying? And so that's also something I shared. And other people have taken advantage of that, as well, so that the family is not burdened with your, you know, costs of cremation and all that. Because that can be expensive.
For Alice, clearing out her stuff is a chance to reflect on her life.
For Alice, clearing out her stuff is a chance to reflect on her life.
I’m making my lists, you know? I started clearing things out, doing them. You've heard of ‘The Swedish Art of Death Cleaning’. It's basically the practice of, it's kind of Marie Kondo-y – just getting rid of stuff so that when the time comes, people don't have to do it for you. And it's also a way of reflecting on your life, and what it is that you are doing, and want to be doing. So, since this is relatively new, the list isn't very long yet, but I'm coming up with some good things. I mean just wanting to do the things that are important to me, you know? Spend time with my family. Enjoy, I’m spending less and less time with work.
Peggy wants to avoid being a burden to her family.
Peggy wants to avoid being a burden to her family.
The doctors can't give a time frame. So, I think that's what's, that’s what’s the scary part, because, like, do I have 10? Do I have 15? Do I have less?
---
Do I start putting money aside for the funeral? I try not to think like that. But I don't want the burden for my siblings to take care of all this stuff.
---
I try not to think about it, because they don't want to. But, you know, I'm a planner. I have to make sure everything's in order for them, because you have to get all this stuff, you know. I have all this stuff, the house, my retirement, my state retirement, you know, bank accounts, all the stuff.