Seeking Support and Coping
Undergoing frequent screening and having repeated preventive procedures, or multiple treatments for cancer, can be frightening, stressful and exhausting. After surgery or other procedures, the people we interviewed often needed help with everyday activities such as personal care, housework, shopping and cooking. They also needed ongoing emotional support. When talking with us, people shared their views on the importance of personal support from family, friends, professionals and pets.
Getting Support from Friends and Family
Some of the people we spoke with said they had excellent support from family and friends. Lori’s family had set up a private Facebook group so that they could easily keep each other updated. She also considered herself lucky to have a large group of friends who knew about her situation and would be there for her “in a heartbeat” if anything happened. Gina explained how she and her relatives, “tell each other when we have our mammos, or when we have our MRIs, or another biopsy.” This brought them closer together and was a meaningful way that they “all look out for each other.”
Victoria appreciates that while family members respected her need for “alone” time, they also encouraged her to keep going even when she didn’t feel like it.
Victoria appreciates that while family members respected her need for “alone” time, they also encouraged her to keep going even when she didn’t feel like it.
My sister was with me for a lot of time and she couldn’t either – I would always tell her, go and rest. And, I would look for ways to be alone so that they wouldn’t see that--because I would tell them that “Yes, I can.” But really no one can. It always gets bad. But it was the only way for me to let it go, like that.
And your family, when you would ask for those moments alone, would they respect that, and would they give you your time too?
Yes, yes, they would respect that, and they would give me my time. But--and I believe, that they noticed because when they could come to me, they would say, “Mami, are you okay now?” And I would say, “Yes, I’m ok. Are you ready to eat?” I would say yes, when I couldn’t get even one bite in because it was difficult. The nausea, food doesn’t taste good at all. I couldn’t even get water down sometimes. But since I felt very tired sometimes and I wanted to sleep all day – but like I said, I believe that yes, the strength came from family, because thanks to them, they didn’t leave me. They would always say “Get up Mama and let’s go walk.” It was in cold weather. There was snow. But my husband would say “Let’s go. You will sit in the truck and let’s just go for a drive.” And yes, that’s how that was. I felt like that helped me a lot. Or even in the hallway, walking and walking, they wouldn’t leave me. But it is difficult.
Mi hermana estuvo mucho tiempo conmigo y tampoco podía-- yo siempre le decía, ve a descansar. Yo buscaba la manera de estar sola para que no me vieran que-- porque les decía que sí puedo, pero realmente uno no puede. [SOLLOZO] Siempre va hasta abajo. Pero era la única manera de desahogarme, así.
Y su familia, cuando usted pedía esos momentos de soledad, ¿ellos respetaban y le daban su tiempo también?
Sí. Sí respetaban y me daban mi tiempo. Pero, y yo creo que se daban cuenta porque cuando llegaban, me decían, mami, ¿ya estás bien? Le digo, sí, ya estoy bien. ¿Ya estás lista para comer? Le digo, sí, cuando no podía entrar ni un bocado porque era difícil—[eh]las náuseas, la comida no sabe nada rico. Ni el agua me podía entrar a veces. Pero como a veces me sentía muy cansada y quería estar durmiendo todo el día-- pero como le digo, creo que sí, la fuerza vino de la familia, porque gracias a ellos no me dejaron. Siempre me decían, párate, mamá, y vámonos a caminar. Era en el tiempo de frío. Había nieve. Pero mi esposo me decía vámonos. Te sientas en la camioneta y a dar una vuelta nada más. Y sí, fue así. Sentí que eso me ayudaba bastante. O alá en el pasillo, caminar y caminar, que no me dejaba. Pero es difícil.
While in hospital because of her polyposis syndrome, Mea found that family visits kept her going.
While in hospital because of her polyposis syndrome, Mea found that family visits kept her going.
But when I do have those big surgeries, we all try to pull together as a team. You know, and with the hospital, we try to rotate, because they like to for me to always have somebody up there with me. At least they try. They try. So because-- It's really hard being away from home for almost a month.
Yeah, I would say.
It’s really hard. You know, you don't get to go outside or anything. You're confined to your room, you know, with your IVs and just TV. And you don't want to move around, because you're still in pain.
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By coming to see me, you know, bringing me things, calling me, bringing the kids up-- that keeps me going. And, you know, trying not to let me be in the hospital by myself, you know, so I don't dwell on things. They try to keep my mind busy. It helps. It really does.
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But when people come, that makes me feel better. You know, lets me know I'm still loved.
Some interviewees found it particularly helpful to have a family member with them to medical appointments to ask questions and take in information.
Linda felt overwhelmed by information at medical appointments.
Linda felt overwhelmed by information at medical appointments.
Doctors are firing away and they're talking to you, and they want you to take your pink vest, paper vest, and they want to look and see what's going on here. They are looking at your breasts. You're looking at your breasts, at your implants. The doctor's talking. He's pointing and you're trying to figure out what he's saying, and you miss a lot of it. [break] And we would get back in the car, and [NAME] would say “well [NAME] said da-da-da-da-da-da-da,” and I went, “He did?” and he goes, “yeah.” [NAME] heard for me all the things that I missed, and he would write them down and we would formulate questions together. And he was with me every step of the way.
Paul says his wife is better at dealing with complex health information than he is.
Paul says his wife is better at dealing with complex health information than he is.
When we go to see a doctor, she already knows a lot more of what they're talking about, being a biologist by education. But then, also, anything that she doesn't know or is concerned about, it's very easy for her to-- she knows where to go to look to find the information. So she was very, very helpful. And just being my wife and being my partner, so helping me in that way, she was she was amazing. But also, fringe benefit is that I never really had to worry about medical things that I didn't understand, because I think a lot of people don't get don't get the kind of care or treatment that they could get if they knew how to ask for it or what things to be concerned about or not to be concerned about.
Cynthia says her mother helped her navigate her healthcare appointments.
Cynthia says her mother helped her navigate her healthcare appointments.
There’s a lot of information being thrown at you. And later on, you're thinking about stuff and … you have that point person to go back and say, do you remember talking about this? What did she say about this? What did she say about that type of thing?
Many of the people we interviewed talked about the impact - actual or anticipated - of treatment related to inherited risk on their closest relationships. For these people, support from partners included not only care offered during and after treatment, but also accepting changes, risks and fears associated with having increased cancer risk.
Heather and her husband faced tough decisions, together, about having children.
Heather and her husband faced tough decisions, together, about having children.
His, you know, immediate reaction when I started getting very emotional talking about, if we were to have kids, here's what this would mean. And I'm scared of going through like getting pregnant and being off birth control because I’ve kind of for so long been told that birth control's been a very healthy thing for me to suppress my hormones, which ultimately helps diminish, you know, the odds of some of the ovarian and endometrial cancers to develop. So I was scared of, what if it takes a year? And during that time, I've now increased these odds that I'm already at an increased percentage of. And they go up even more. And I have this kid, and then I, you know develop one of these cancers, and I can't be here to raise this kid. And I had gone to this place of like, I'm going to leave you a widower, and you're going to be a single dad. And all these things, I just went so far out into what this could all mean. And I think I've been very lucky to have found someone who was just so, like, it's all going to be good. We're going to be good. You're healthy, your mom's healthy, your brother's healthy. You guys have all lived with this. You just got to do your screenings. And he was very like, you know, your health first. So let's go meet with doctors and see what the impact is to your health. But beyond that, let's just have our kids and who cares?
Mea worries about her husband getting exhausted by her need for support.
Mea worries about her husband getting exhausted by her need for support.
He's very supportive, but sometimes I feel like he gets tired. You know, when I ask him, he'll go, “No, no,” but I would say it would have to be hard on him, because he's working, and I'm constantly going back and forth to the hospital, so he's like here and there, and he's trying to help with the kids. And he loves me. You know what I'm saying? But I know it's difficult on him. You know, I bet you when we got married, he's like, “whoa, I didn't sign up for all this,” but he does good. He does good. Because, I mean, at times, I would have thought he would have left me, you know, so much I’m dealing with, so much I'm dumping on him. Still, he helps as much as he can.
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Sometimes that doesn't work out for people. Sometimes people get married, and they're like, “Shit, I'm not doing all that,” but nope. He's still standing strong with me. And he tries to help as much as he can and be as sympathetic as he can.
Irina’s husband was supportive about early menopause.
Irina’s husband was supportive about early menopause.
Going into menopause, it does affect our relationship in certain ways that I knew was going to happen, so I needed to make sure that he's OK with it … and he is … He is extremely supportive. … He basically says that it's much better to have menopause now than have cancer 10 years later.
Wishing for More Support
While many of the people we interviewed felt well supported by family and friends, others had a more difficult time. Several people described friends who seemed to find it hard to relate to their situation, or family members who appeared overwhelmed by their roles as caregivers. Eve, for example, talked about friends who had been supportive at first but seemed to get tired of it over time.
Susan says her friends are not particularly interested in her cancer risk experience.
Susan says her friends are not particularly interested in her cancer risk experience.
I have found that friends haven't been particularly interested. I think most people have a limited interest in what they perceive as other people's problems, unless it somehow reminds them of something they should think about. I’ve actually been surprised at how little interest people have had. But maybe my friends are people who haven't had any reason to be concerned about the conjunction of colon cancer and endometrial cancer in their own lives.
Because she is so young, Briana says, it’s hard for her peers to get how she feels about mortality.
Because she is so young, Briana says, it’s hard for her peers to get how she feels about mortality.
Yeah, you know, my friends—they're great friends and I love them. But when you're in your mid 20s, it's something that's really hard to relate to. And while my friends were there for me, and very willing to help out in whatever way they could, it wasn't like they had had the same life experience. So I can talk to them about my experience, but it's still kind of isolating, too, especially when, you know, they're focused on their wedding next spring, or the baby that they're having, or the new boyfriend, or-- it's just-- I guess I always felt like growing up, I was on a different plane than the rest of my friends, or maybe a different level. Because I realized my mortality so much younger, because of my mom dying and unders-- I guess I didn't understand the risk, but just this risk that I knew was there.
Ronnie says her family was unable to offer much support because her father also had cancer.
Ronnie says her family was unable to offer much support because her father also had cancer.
As far as face to face support, there wasn't really much of anything. I mean my mom—my parents couldn't be here because my father was dying at the same time. So, my mom was very occupied with taking care of him. And so he died of mesothelioma
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So, for me, it was just-- I never thought that it would be this solitary. Like it, I think I was more upset by the lack of social support than I was about, like, the diagnosis. I just thought, you know, if something terrible happened there would be more support in my life for something like this, and there wasn't really much in terms of face to face support. My aunt and uncle came to be with me during the surgeries. But, you know, they have their own families. They had to leave after a certain amount of time, and my mom came, I think, for like a week of my radiation treatment. My father was stable at that time. So, she came and saw me. But I think through the worst of it, when I was-- when I got the news, I was by myself. And the next day was Thanksgiving. And I wasn't with any family. I was with nobody.
Support Groups
While physical and online support groups for common cancers exist in many places, there are far fewer resources for people with hereditary syndromes. Some of the people we interviewed had been to support groups. Others wished there were more resources relevant to their specific needs since it can be hard to find other people, let alone groups of people, with the same rare condition. A number of our interviewees noted that the information and support needs of people like themselves (who have been diagnosed with a hereditary cancer syndrome yet have not actually experienced cancer) are often different from those of other people attending cancer support groups. This was an issue especially for younger people, or those diagnosed with ductal carcinoma in situ (DCIS), because support groups are most often composed of people at a later life stage.
Cynthia yearns for a group who share her experience of prophylactic surgery without cancer.
Cynthia yearns for a group who share her experience of prophylactic surgery without cancer.
I would be interested in possibly meeting with a group of women who have done it as a preventative measure, because I think that your issues-- although some of them are the same, some of them are different than a woman who actually went through the chemo and had been diagnosed. And so, I would personally would like to find a group of women who have done it as a preventative measure to sit and have conversations with. A support group of that nature would be something I would be interested in possibly utilizing. And I don't know if there are any in our area that exist.
Other people spoke about the need to get support from people having similar experiences with risk and disease.
Precious finds it helpful to both receive and to give in her cancer support group.
Precious finds it helpful to both receive and to give in her cancer support group.
It's just funny how things happen. I was just reading a neighborhood paper. And in the paper, there was a person who had a big article talking about metastatic breast cancer. And she was a part of an organization called [organization]. And I read her contact information in the article, contacted her at that time and, because I knew, really, nothing about metastatic, even though I went to the doctor by that time, and, you know, I was learning. But I needed support and talk to people-- real people-- that already had it. And she was like perfect for me-- a black woman.
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And I’m, it just has really helped me. It's helped me. For instance, when I talk to other people at the meetings and I hear what they're saying and what they're asking their providers, that helped me to know what to ask my provider. And that's helped me, as well. Because even though my provider is excellent, I have to kind of advocate for myself. And I said, don't you think it's time for me to have this test or that test, or don't you think we need to try this or that? And that has helped me. Because he wasn’t, you know, for instance, my PET scans. That's-that’s why I started having them more regularly. And that's when they started seeing the progression. And so, I'm on top of that because [organization] has helped me to advocate for myself when I go to the doctor and be more aggressive in being a part of my, my care. And so I am forever indebted to organizations like [organization].
Thomas understands the importance of a peer support group and wishes he had one.
Thomas understands the importance of a peer support group and wishes he had one.
You know, so it’s, dealing with this, honestly, is all about support. I can't stress that enough. It's all about support. Find you support. Find your support group. I wish I had one. I wish I had one. But if you out there and you're dealing with this disease, find a support group. Don't be afraid to talk. Go to it. If you're afraid to talk, just don't be afraid to listen. Somebody out there has the same thing you're going through. Somebody out there is going to know exactly what you're going through. Unfortunately, for me, I have no one, OK? But it doesn't mean I can't be that for someone.
Professional Counseling
A number of people we interviewed said that while emotional support from family and friends is crucial, it can also be important to get professional help when dealing with something as challenging as hereditary cancer risk. Several interviewees talked about using a mental health support service and explained why this was an important part of their experience. Some said that they could not be totally honest about how they were feeling with the people closest to them, as family members and friends were often concerned to keep everything positive. As Eve put it, “my support circle of my family and my husband are like, ‘you’re doing really well. You’re doing great. Oh, I’m so proud of you.’ I don’t really talk about how I’m feeling with them. Because, you know, some people just don’t understand.” In the clip below, Christian captured the feelings shared by others when he pointed out that “it’s been nice to be able to talk to someone that’s not in the family … someone who’s not a fixer … who will listen, who has … no opinions … about … this is what you should be doing.”
Christian finds having a therapist who “is not a fixer” to be a big help.
Christian finds having a therapist who “is not a fixer” to be a big help.
I saw a therapist recently. And it's been nice to be able to talk to someone that's not in the family, someone who's not a fixer, who will listen, who has no opinions really, about, you know, this is what you could be doing, or should be doing. And just a different perspective. And she has framed a lot of things for me in ways that I would never have thought. And it's just helped me work through a lot of feelings that I've had about the Lynch, or the Crohn's, and just other, you know, stressors that I have in my life of, it's OK to change these things, and it's OK to set these new boundaries, because that's what you're doing. You're not cutting people out. You're not, you know, making these changes out of, you know, selfishness. In a sense, it's selfishness, but it's medical necessity, or medical desire. But that's OK. So it's nice to have someone there who can say, “it's OK, and what you're feeling is valid, and I'm not going to minimize that.” And that's been really nice.
Paul explained how talking to a professional counsellor was different from talking to family.
Paul explained how talking to a professional counsellor was different from talking to family.
So it’s OK to have those feelings, and it's OK to reach out for help. Like speaking to a counselor, that helped me out. Just being able to talk to somebody about it, you know, without having to-- like speaking to my wife, you know, I would want to, you know, not intentionally, but subconsciously, sort of guard against being too open about things. Because you don't want your family to be concerned about you, if you, you know—like wow. This...
It’s OK.
I mean, not that you don't want to let them in on your concerns, but with a counselor you can maybe be a little more honest about how difficult things are for you, because you don't need to put a sort of brave face for your family so everybody knows you're OK and you're doing well.
Right.
Because it can be tough to ask for help, and it can be tough to admit that you're not doing well.
Mea wishes she had a professional counselor who would understand her experiences.
Mea wishes she had a professional counselor who would understand her experiences.
No. No. I mean, I believe I need like counseling or, you know, somebody to talk to, but I don't. The only people I talk to is my family, and they listen, but I don't think they actually get it-- my extent of what I go through. You know, it's the old saying, you don't know what somebody's going through if you're not walking in their shoes. So, it would be nice to talk to somebody if they will offer counseling, because I just-- sometimes I feel like I'm alone, you know, because I have not yet bumped into anybody that has the same disease I do. I don't know anybody. I haven't met anybody, nowhere. And it's a lot of places where I go and they're like, “What's that?” So it would be comforting to be able to talk to other people that are in my shoes.
Support from Pets
A number of our interviewees found that their pets provided unique and important forms of support that helped them manage stress and difficult emotions. Some said pets provide a useful distraction at challenging times. Others emphasized how being responsible for an animal provides helpful structure and motivation. Terry, like others, said animals can take your mind off health issues and be surprisingly helpful.
Briana describes how her dog helped keep her moving and motivated.
Briana describes how her dog helped keep her moving and motivated.
But actually, one of the things that went through my mind when I was adopting this really ugly, four-week-old puppy was, “I'm going to have her when I go through my surgeries. This will be great. She'll be a good support system.”
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So I think that the dog, especially, gave me a lot of motivation to get out and go to the park. Because I really like going out with her, and going hiking, and walking around, taking her to the dog park.
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I was staying with my mom's cousin, the family member that helped me out. And we would go for walks every day with the dog. [NAME] would take the dog, because I wasn't strong enough. I mean, you see, she's 20 pounds. She's so tiny. And I didn't even have the strength to like hold onto her leash. So [NAME] would take her. And every day, we would just walk a little bit further. But it was that morning, we're going to take the dog out for a walk. And it got me out. And it got me excited to get out.
Other people we interviewed talked about the unconditional love they feel from their pets, and how this makes it easier to cope with health issues. Lori said that, however bad a day she has, an enthusiastic welcome home from her dog makes her feel like her day “just got a heck of a lot better.” Heather described how having her dogs come over to sit with her is especially meaningful at the time of her annual screenings.
Carrie appreciates the fact that pets never judge or criticize.
Carrie appreciates the fact that pets never judge or criticize.
And they just love you for where you're at. They're not looking at you going, really? Because you look all pasty.” Or, “What's with the hair? Where'd the hair go? Or what's that thing-- what’s that drain hanging from you? What is that?” It's just like, “You're my world from start to finish.” So I think pets are great. Great therapy.
Lainey used her dogs as a sounding board when she wanted to say things out loud that she worried might upset humans.
Lainey used her dogs as a sounding board when she wanted to say things out loud that she worried might upset humans.
Sometimes you just want to talk it out. And you can talk to a pet, and they don't care. You know? They'll be there. And you might not want to voice things to your spouse or to your children. Or if your parents [INAUDIBLE]. You know? You just sometimes you just need to talk and vent. And a dog is great because they will love you. And sometimes you don't want to hear other people's opinions or other people's thoughts on what you should do, or pity or any of that. You just need to get it out. And that's why pets are absolutely wonderful.
Several people described how their pets come over to offer comfort at times when they are upset or feeling low. Amy, for example, noted how “dogs just have this intuition to know when something's going on, and, and they comfort you in their own little way.”
Several people, including Christian and Carrie, welcomed the responsibility of owning a pet because it meant that they could maintain their sense of being a care provider rather than just being someone who needed care themselves. For Carrie, it was “nice to have a little thing that needs you, especially when you're on usually the receiving end of the caretaking, to have something that you take care of feels really nice.” Or, as Christian put it, “It’s important to have something to be able to care for.”