Experiences with Work
The people we spoke with described different ways in which breast cancer affected their working life. Some continued working through their treatment. Others took a little, or a lot, of time off. Several of the people we spoke with eventually looked for work that was less demanding, went onto disability, or decided to take early retirement.
Working during Treatment
A number of the people we spoke with chose to work through their treatment, as Becky said, in order “to keep some normalcy around things.” Or as Chelsea put it, “What else would I have been doing? Sitting at home and thinking of it 100% of the time?” Not allowing cancer to take over your identity or your life was a common theme. For example, as Denise remembered, “I worked every day...I only took off for my chemo treatments.” Working through treatment out of financial necessity was also common. Maria H. “had to work because the insurance I had was through work.” Kawanna wanted to both “stay involved” with work and “stay employed” to protect her health insurance.
Working is one way Carrie made sure cancer didn’t cause her to “drop out of the world.”.mp4
Working is one way Carrie made sure cancer didn’t cause her to “drop out of the world.”.mp4
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. I want to be, I mean, that's the worst part of being a patient is that you are sucked out of your world, and it all just keeps happening around you, and you are suddenly a patient. And it is dehumanizing.
Several of the people we spoke with continued to work while undergoing chemotherapy. This generally required some planning to allow both for treatment days and recovery time. Peggy explained how she “did the chemotherapy on Fridays...so that I would have Saturday and Sunday to feel a lot better. And by Monday, I was about 80% back, so I was able to stay awake all day and work.”
Asante carefully planned her schedule to balance work and treatment.
Asante carefully planned her schedule to balance work and treatment.
So, I would get chemotherapy on Thursday. I would go to work on Friday. I'd be down for the count on Saturday, I'd be okay. I'd be down for the count on Sunday and Monday, and then go back to work on Tuesday.
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So, then I would have time to like recover and build up. And then, you know, Thursday would come around again, this, the second week, and then the cycle would complete.
Sharon was well supported by her colleagues as she worked through chemotherapy.
Sharon was well supported by her colleagues as she worked through chemotherapy.
And I worked full time while I did chemo. I had to, except for during my chemo weeks, I would take off time for chemo and my work was awesome. My employers were understanding. I work in a dental office, and so the hygienist, the other assistants and the receptionists just took me under their wing. And they were amazing. They were so supportive. I'd come to work and, in my cubby, there'd be gifts and little things just letting me know that you they were thinking of me, loving me and supporting me. And I just was very well supported through the process. I can't imagine a woman having to do this by herself. It would be horrible.
Feeling Ill at Work
The side effects of treatment, such as brain fog, memory problems, nausea, vomiting, diarrhea and fatigue can make going back to work difficult. This meant that some people needed flexibility from their employers in order to continue working. Becky was able to work from home on days when she felt unable to cope at the office. She explained, “I'm not going to wear sweats into the office and I'm not going to be running to the bathroom every two minutes.” Some people found that, when they went back to work, they weren’t able to perform as well as they used to, due to the side effects of treatment. Sharon noticed that things at work were “slipping through the cracks right and left.”
Kim had to change the way she worked because of memory problems.
Kim had to change the way she worked because of memory problems.
As a psychotherapist, I couldn't remember information that well, people's details of people's stories that I might have been able to remember before. So, I relied a lot on notes, and people understood that my need to take notes. And then I also kind of shifted some of my therapy techniques where remembering details weren't as important.
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But it was a challenge, and I did feel panicky going back to work at first. I was-, I felt somewhat discouraged. I wondered at times if I was going to be able to continue in my profession because I certainly had a standard for myself at- in terms of my functioning. But I was gradually—some of it-, some of the chemo effects did subside a bit in the fatigue, and I developed these other ways of practicing. What also is critical for me is I didn't start back full time again. I couldn't have done that. I started back slowly with a few clients. And again, I was fortunate I was able to do this. And just so we added in clients as I could kind of handle that.
Finding it Hard to Work
A number of people we spoke with worked in jobs that were physically demanding or inflexible in terms of taking time off. It became impossible for them to work during treatment. As a result, financial worries were added to the other stresses they were already experiencing because of their illness. Sometimes spouses also worked less so they could be caregivers, adding to worries about money.
Maria de Los Angeles had to give up work and did not have a safety net.
Maria de Los Angeles had to give up work and did not have a safety net.
I worked normally, like eight to ten hours, but it was a seasonal job. And then later, I was working on a, like, livestock ranch. But when I started all of this process, I had to leave because I didn’t feel that I could and wouldn’t have been able to do it with the treatment.
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And the part that you mentioned earlier about going back to work. Have you had the opportunity to go back to work now?
No. No, I have not had the opportunity or haven’t found a job where I can-, that won’t be so hard or tiring. The same for being Latina or not having, well, social security also has made it difficult. But I am working a little now, in a restaurant. Only from Thursday to Saturday, three hours in the afternoons.
Sí. Trabajaba normalmente, ¿qué? Ocho horas o diez horas, pero era un trabajo temporal. Y ya después estuve trabajandoen un,como en un rancho de ganado. Pero cuando empezó todo este proceso, lo tuve que dejar porque no, sentí que no podría y no hubiera podido hacerlo con el tratamiento.
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Y la parte que usted mencionó anteriormente de regresar al trabajo, ¿usted ha tenido laoportunidad de regresarahora?
No. No he tenido la oportunidad o no he encontrado un trabajo donde pueda, que no sea tan pesado ni tancansado. Igual porelser latina o no tener, pues un socialsegurita, también se me ha hecho difícil. Pero ahí trabajo poquito ahora, en un restaurante, solo de jueves a sábado, tres horas por la tarde.
Victoria's family faced financial hardship when she gets sick.
Victoria's family faced financial hardship when she gets sick.
I definitely stopped working. So, when I stopped working, I also had in my mind, and I said, "Well if I leave work, how are we going to cover everything? Things for the house, the bills, everything, everything that we will need." My husband also stopped working some days to be there with me. Also, he worked fewer hours because he was with me more. So, well, then came everything. Everything, everything on my mind. You are with him, you are going into treatment, or that it will take a lot of time, you are not going to work. My husband also will be there for my care. So, well, yes, he came a lot on my mind, and I said, "Well, where are we going to get so much money to cover everything?"
Yo definitivamente paré de trabajar, paré de trabajar. Entonces, usando yo dejé de trabajar, también vino en mi mente y dije, bueno, si yo dejo de trabajar, ¿cómo 616vamos a cubrir todo, las cosas de la casa, los pagos de "billes--" todo, todo lo que hace falta? Mi sposo también dejó de trabajar unos días para estar ahí conmigo. También dejó de trabajar menos horas porque, pues, ya él estuvo más conmigo. Entonces, pues, viene todo, todo, todo en la cabeza. Estás con el--vas a entrar a un tratamiento que va a tardar mucho tiempo, no vas a trabajar. Mi esposo también va a estar ahí al cuidado mío. Entonces, pues, sí, vino mucho en mi mente y dije, bueno, ¿de dónde vamos a sacar tanto—este--dinero para poder cubrir todo?
Helpful Employers
Many of the people we spoke with told us that they had flexible, supportive employers who accommodated their needs at work. Maria H. recalled her employer “supported me incredibly… as much as my family.”
One way that employers supported people undergoing treatment for breast cancer was by allowing extensive time off and flexible work schedules so that people could attend medical appointments. Chelsea “did a lot of half days... work[ing] in the morning and... spend[ing] the afternoon at the doctor, or vice versa.” Ronnie “teleworked the whole time.”
Katrina eventually had to stop working, thought her employer supported her as long as possible.
Katrina eventually had to stop working, thought her employer supported her as long as possible.
But they worked with me with my hours. They would cover for me or I'd split them up. I worked Monday, Tuesday, Wednesday, like one on, one off, you know, like, that so I wouldn't get too tired. So, they worked with me a long time. Because, you know, I've dealing with this a long time. So, yeah, they worked with me all kinds of ways. Because I had to fly to [LOCATION] and everything, and see that took a while, you know, to do the treatment, and then come back. I would come back on a Friday. And then I would rest Saturday and Sunday, come back Monday, and like that. So, it worked like that until I just got, the neuropathy got really bad. And I'd found myself as a nurse forgetting. You know, before, I'm, I'm not going to harm anybody. I'm going to stop, even if my resources have to pay. Because I don't want to hurt anybody. You know, we're there to, for safety and caring of our patients. So, I asked them, could I take a leave or you know, I took a, like a short leave, like a 30 day leave. Because I just said, maybe I'm just overwhelmed, too much working. Because I was getting that Taxotere and it was just wearing me down mentally, physically. I was just so tired.
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And at the end of the day, I say, "No, I can't." I don't like to ask for help. I want to be my own. I'm getting my own check. I don't want nobody to carry my weight. [SIGHS] So I just, I just had to take the leave. I just didn't want no patients to suffer. I didn't want my co-workers to suffer for my lack of not being a team player to help. Because they can't help me and do their work too.
Nikki was able to come and go at work as needed.
Nikki was able to come and go at work as needed.
But as far as like my day-to-day, I mean, I'll leave work and go get my shots, and then I'll come back. Or I'd just be, like, "Nope. My hips hurt today. And I'm going to go home because I can't really walk." And I don't have to explain that. I don't have to tell them, like, they just know. Like, I'll be, "I have treatment today." And they're like, "OK. Maybe we'll see you tomorrow." That's just kind of what it is. And I plan my trips around if I have treatment. Sometimes I change my treatment. I just did that. I have a big trip coming up, and I'm like, "Yeah, I don't want to do scans that week because I actually have a big trip. So can we reschedule?" And I mean, it's just not a big deal. We just kind of get it all on the calendar and schedule it, and hasn't really impacted. I mean, I guess it has changed it, but it's—you know, everybody's still flexible and adaptable with it.
Another way that employers supported employees with breast cancer was by modifying their duties. Carrie worked in retail. She explained that her employer “created some work for me that I could do off the floor, some data entry kinds of things.” Denise sold vehicles. She recalled that “when I was in doing chemo...walking became an issue because you're all over the lot... If I had an appointment, they would bring vehicles up, and then I could show customers.”
John’s employer offered him deskwork while he was dealing with treatment.
John’s employer offered him deskwork while he was dealing with treatment.
They were so nice to me. They wanted to give me an easier job at work where I didn't have to move around as much, but it didn't bother me. I wanted to just keep going, and I didn't—I didn't really want to be made to feel different or be made to feel like when I came back, I said, "Oh. No, I'm fine. You don't have to put me in the central control area", for instance, where you would sit all day and push buttons. That's a very easy task. I wanted to be up in the block area doing something where I'm walking and exercising, and being active.
Missing Work
Many of the people we spoke with often had to take time off work for treatment, recovery and medical appointments. Ronnie worried about how much time she had to take off. Although her employer was understanding, she felt like she was “becoming unreliable.” Ginny’s breast cancer was not her first major illness. She “didn't want to get a reputation as...being ill and being [on] extensive...short term disability.”
Zulma worried that she will lose her job.
Zulma worried that she will lose her job.
I have worked for 10 years for one company. And when I told them that I had cancer, well, I said, “I will lose my job and they won’t accept me anymore.” That is what I thought.
But other people advised me, they told me, “No, you don’t have to leave your job. You have cancer. When you get through all of this, you can go back to your job. They don’t have a reason to leave you without work, it is against the law”, they told me. So, I said, OK. So, yes, I spoke with my supervisor, I had to stop working. Well, they had to do some papers, right? At work, for disability or something like that, so that when I have finished with my treatments, I could return to work. And, yes, they waited for me in my work.
Yo estuve trabajando, yo tenía trabajando 10 años para una compañía. Y en cuanto yo les dije que tenía cáncer, bueno, yo dije, voy a perder mi trabajo, ya no me van a aceptar. Es lo que yo pensaba.
Pero otras personas me asesoraron, me dijeron, no, no tienen porque quitarte tu trabajo. Tú tienes cáncer. Cuando tú salgas de todo esto, tú puedes regresar a tu trabajo. No tienen porque dejarte sin trabajo, es contra la ley, me dijeron. Entonces, dije, OK. Entonces, sí hablé con mi supervisor, tuve que dejar de trabajar. Pues se tuvieron que llevar algunos papeles verdad en el trabajo para disability o algo así, para que cuando yo ya terminara con mis tratamientos, yo pudiera regresar a trabajar.
Debbie was grateful that her day care clients were understanding when she had to close during treatment.
Debbie was grateful that her day care clients were understanding when she had to close during treatment.
It was hard to have to close for six weeks. But as soon as I was diagnosed, I let every single client know. And they all said, “Okay, whatever you need. Let us know.
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And they all made other arrangements, were eager to get back, to get back here, and kids were missing me, and the stability of home here. And then having to be, I told them at that time that there would be another surgery. That I'd have to be closed for a couple of weeks. And so, they were all like, “Okay.” And again, I took one week of that as vacation, and so basically just closed for one week. But they've all just rolled with it. And it's made it much easier. Some of them have brought in meals. And so, it's made it a lot less stressful than it could have been.
Looking for and Starting a New Job
Several of the people we interviewed were due to start new jobs around the same time they received their cancer diagnosis, and worried about whether they would be able to move ahead with their plans. Most found their employers understanding. Susan went to tell the person who had just offered her a job that he should look for someone else, but her told her “We will wait for you however long that may be.” Other people we talked with were stay-at-home mothers who faced a range of challenges as they tried to re-enter the workforce after breast cancer. Sally, for example, had been excited to go back to work after five years at home with kids, but after her diagnosis ended up spending another year at home “being a professional patient.”
Amber took on a new position at work soon after receiving her diagnosis.
Amber took on a new position at work soon after receiving her diagnosis.
So, I'm a service manager at [LOCATION]. And actually, I took that position on right as I was getting, right after I got diagnosed with cancer. So, it was, I moved up in the company,and I said it was something that I was interested in. And I said, "Well, you know, I would take the position if I wasn't going through breast cancer." And my boss said, "You can do it," you know, "I have faith in you." And I go, "Yeah, but it's a lot of stress," you know, "and going through this." And he goes, "I think you'll be fine." So, I took on this new role in November, and my first chemo was in October. So, I was literally going through a whole new job, new position, and going through a new journey in life as well. But the company I work for, they're extremely—it's a family-owned business, and so, they're extremely understanding. And they always told me, "Take the time you need. You don't have to be here. If you need to be off, you need to be off." I could work from home if I needed to be. And my colleagues as well, like everybody was completely understanding.
Michelle found a part-time job but discovered she needed more time to recover.
Michelle found a part-time job but discovered she needed more time to recover.
I've been a stay-at-home mom for seven years. I kind of wanted to go out and find my new identity again, but with being able to enjoy being a stay-at-home mom. And so, I thought-- my son was in first grade at the time. I'm like, “Hey, I'll get a job at the school. I can do something at the school.” So, I got a job in the lunchroom. I was the helping kids open their lunch, and sending them to the bathroom, and keeping them on track. And they're elementary school kids. They're busy, and loud, and hungry, you know, and they have a lot of energy. So, I thought I could do that. But I was having a lot of pain. And I made it for three days-- excuse me-- two hours a day. And every day when I came home, I was in pain. I was swollen, and I was exhausted. Thankfully, I, I know the principal well. And on the third day, I went in and talked to her. And I said, “I can't do this anymore.” And I was in tears. I, I was really struggling with the pain that I had gone through and everything I had gone through last year. And I wanted to find something to do, but that wasn't it, because I just couldn't do it.