Carol

audio
Age at interview
45

Carol (45 years old) is married and has four young children. She is on sick leave from her work as a high school teacher in her local community.

Carol received her diagnoses in 2014. Carol used to check her breasts about every month. When she found a lump one day she went to the emergency department as she didn’t have her own doctor. She was referred to have a mammogram which she did right away and then went on a holiday. As soon as she came back she was contacted to get further testing done. During the weeks that she waited to book her appointments for the tests, she found a family doctor who advised her to go private if she wished to be tested faster. Carol was anxious about the long waiting times and decided to visit the private clinic suggested by her doctor. Within a week she had a biopsy, the test results and surgery (lumpectomy) to remove the cancer. The quick response via private care made an enormous difference for Carol as it reduced her fear regarding the chances of any further growth of the tumour. Carol went on sick leave from work as soon as she received the diagnosis. She is now trying to manage the chemotherapy and its side effects as well as care for her four young children. Lacking the energy to do the things that she is used to do is difficult for Carol. However, she tries to count her blessings rather than to dwell on the fact that she is going through chemotherapy to be followed by radiation as well. The fact that Carol has been told that she will be followed closely for another 10 years after the chemo worries her. She wants to stay around much longer to see her children grow up and make sure that they are well. Carol is part of a close community and has received great support from her friends, family and neighbours. She receives cooked meals for the family about twice a week and these gestures have made a huge difference for her. Learning from the experiences of friends who had gone through similar experiences with breast cancer was another useful source of support for Carol.

Time since diagnosis
2 - 5 years
Phase of treatment
In treatment

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The first session is really, I think, the hardest because you don’t really... they try and explain to you what the side effects are and what could happen and what’s going to happen but I think it’s harder than you can imagine the first time. And there’s, I don’t normally take a lot of pills and I think I was taking 6-7 pills, twice/day, plus extras just to keep on top of the nausea and the constipation. There are a lot of side-effects of that first round of chemo.
It was hard to get control of it that first time because you don’t know. It got a little bit easier. So, that was every 3 weeks you had to do that one and it took you a good week to feel kind of normal and a lot of pills. I was taking a lot of pills for that time just to keep going.

Interviewer: So mostly pills to kind of help you with the side-effects of the chemo?

Yeah that’s it exactly, so there were... but then some of the pills that you were taking had side-effects, so you had to take more pills to try and counteract that. If you tried to not have any of the pills it was awful, it was awful.

Interviewer: Did you try that the first time?

I did that the first time. I did it because I’m not a big pill ... I don’t like to take a lot of medicine.  Then when I went in the second time, I was telling them. They said "Just be honest about what you’re doing, what’s happening, what your symptoms are, because we can’t help you unless you tell us exactly." So when I told them they said "Okay you’re going to have to let that go and just take the pills because we can help you but only if you take it the way that we’re telling you to take it." So after that I followed it carefully and it was much, much better.

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I went on the Internet and I think it was maybe the worst thing I could have done. There are a lot of scary things out on the Internet and it’s hard to filter all of that, especially because I had sort of the diagnosis and I had the doctors. I had I made sure to get copies of everything, everything so I have a file with the results of everything that I’ve done and everything that the doctors have done but then you have words that you don’t understand or concepts that you don’t understand and you Google them. There’s such a wide range of information out there you don’t really know. You know there’s people that say that chemo is horrible and that nobody should do chemo and that there are other options besides the chemo and there’s a healthy diet you know certain diets, etc. All the way to “You have to have chemo.” I had to stop, I actually had to stop going on the Internet.

There are a lot of women out there with breast cancer and so I had several people who offered their experiences to me and that was very helpful. That actually helped me choose the hospital closest to me because a girlfriend of mine said that she had gone there and she gave me the name of the doctor. So I got her doctor because she raved about him. I also went to a cancer centre and they were very helpful also.

They had a lot of pamphlets, a lot of books; one of them was how to help my children through this which was a big thing for me. I didn’t want them to be too scarred by all of this. In the end I didn’t even… I had… there was a book that I could read to them but the kids are very resilient and very okay. They were okay; my oldest one probably understood more the implications of breast cancer and the fact that in theory I could die. So she was probably the most affected by it. The younger ones just wanted to know about my hair, how come I was going lose my hair and then they said “Okay and can I have lunch now?” And that was really the end of it.

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I think for me, also, the scary thing is that I have to be followed closely for 10 years. That means, my chances of having it again for 10 years are elevated. That’s, that’s scary, that’s scary, it means it’s not really over when the chemo and the radiation is over. You still, every year that you get tested, it’s going to be scary and my kids are young still, and that’s hard ...

But there’s knowing in your head, but always at the back of my mind is the fact that it’s 10 years that I have to be followed. And when it comes, if it comes back, it’s usually worse. So even knowing how successful they are at counteracting and fighting breast cancer, I’m still scared at the back of my mind that it’ll come back. I think I’ll be scared for 10 years.

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It’s really not; it’s not a big deal. There was through the hospital, there’s a, can’t remember what it’s called? You could go to a seminar where they teach you how to put on make-up and how to tie scarves, and I did go to it. And it was very helpful to be around other women who were going through the same thing etc., etc., etc. But I find I, I’m fine I could put on eyebrows, so sometimes it depends on where I’m going. In my local community I just go out as I am. I always wear a head scarf I’m not quite ready to go out bald but when I’m going a little bit further out and I don’t really want any questions or funny looks or anything like that, I’ll put eyebrows on. It makes a big difference, it makes a big difference but that’s about it.

And the community has been very supportive. I go into the grocery store and somebody’s always asking how I am? If I need anything? If I can do anything? Neighbours have helped. People involved with their kids, involved with my kids, they’ve given lifts, they baby-sit, so it’s been good, it’s been a very good experience. I’ve had a lot of help from friends, from family and from just the community at large, it’s been good.

Again, it’s hard. You just don’t realize it colours all of your life. I’ve actually been gaining weight which I understand is actually pretty common in breast cancer, but I’m like: I’m sick, I’m supposed to lose weight. You know people are saying “Oh you look great Carol.” I’m like “Yeah but I don’t feel great sometimes.” So it’s hard. It’s hard sometimes because when I really don’t feel well I stay in the house, and then when I feel okay I’m out and you know I have to do the groceries. I have to run errands, I have to do all that sort of thing. People are like well you look fabulous, you look great Carol you know and I’m like okay but I still don’t feel well.

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Yes, I did a lot of research on that too. I actually had tried to stop eating meat and I did for probably about 2 months but it was really hard when I was doing the chemo. Once I started the chemo, it was really hard because I was always nauseous, and it was hard to get the right proteins and stuff that would last long and so I wasn’t able to keep that up. But, on the Internet, there’s a lot of research from pretty respective areas that say that maybe red meat might not be the best to eat, so I try to stick to chicken and fish etc. I’m a little healthier, it’s hard with kids, but not as much sugar, not as much white flour, refined flours and stuff like that. But everything feels like it takes an extra effort to do.It feels like you’re in a pool and you’re walking, but the steps are really hard, and to swing your arms under water is that much harder and that’s what it feels like a lot of times. That everything is weighted down, so to do anything, takes more effort than it would normally.

I feel like I’m on a path. I don’t know if I’ve changed very much yet. I’m determined to live a healthier active lifestyle. If you do some reading, they say, keeping your optimal weight, keeping active are two big, big things in lowering the risk of having the cancer come back. I’m not living that as much as I would like right now, but, I would like to think that’s the chemo that’s preventing me, but we’ll see. Hopefully I will change my life in that way for the better.

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They had a lot of pamphlets, a lot of books; one of them was how to help my children through this which was a big thing for me. I didn’t want them to be too scarred by all of this. But in the end, I didn’t even... There was a book that I could read to them, but the kids are very resilient and very okay. They were okay, my oldest one probably understood more the implications of breast cancer and the fact that in theory I could die. So she was probably the most affected by it and the younger ones just wanted to know about my hair and how I was going to lose my hair and then they said "Okay, can I have lunch now?" And that was really the end of it.

I think my husband and I both tried to just tell them that I’m sick and I won’t feel well sometimes but everything’s okay. That’s just the way it is and it’s going to be like this for a little while but there’s nothing to worry about. And for the most part they haven’t worried.

Interviewer: And did you give them all the same message because they have this age range or how did you manage that?

You can’t give them the same message because they don’t understand it in the same way. So my older one I really I told her the truth and all of it. That I had to do chemo and what the chemicals were going to do to me and in my body. But I just tried to reassure her that I wasn’t going to die. I was going to get very sick but it would be okay. And then my younger ones, I just said mommy was sick and sometimes I wasn’t going to feel good but that it would be okay afterwards. That they just had to be patient with mommy when she wasn’t feeling well. And they’ve been okay, they’ve been good with it. They’ve been good with it, I think sometimes they kind of forget and I have to say "I’m really not feeling well and I can’t do that." And they go "Oh! Okay."

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I did go on some websites but I tried to stick to the medical websites to explain the stages, the size of the tumour, what that meant, and the lymph nodes, etc. The doctors were very matter of fact. Breast cancer, right now, is probably one of the better cancers to get because they’ve done a lot of research. There’s a lot of women who’ve undergone it, and so, as soon as I got the diagnosis, they were like, “Don’t worry. This is what we’re going to do. We’re going to do this, this and this.” It’s very clear and all of the way through they were very positive. They’re like, “This is not a death sentence, and this is curable. The success rate is fabulous, it’s gotten better.” Over the years, it’s increased and you can see by the stages what the success rates are and what the survival rates are, etc. It’s very well documented so I feel like I’m pretty well informed about what’s going on, about what the protocol is, what the success and survival rates are, and what needs doing. But always at the back of my mind is the fact that it’s 10 years that I have to be followed. And if it comes back, it’s usually worse. So even knowing how successful they are at counteracting and fighting breast cancer, I’m still scared at the back of my mind that it’ll come back. And I think I’ll be scared for 10 years.