Kathryn

kathrynn
Age at interview
65

Kathryn (65 years old) has two grown children and two grandchildren. She worked as a teacher for children with special needs.

Kathryn received her diagnosis in 2003. Kathryn always says that her desire to learn French saved her life as she discovered the lump while she was reaching for her study books. Kathryn underwent 4 lumpectomies in one month to get the margins clear. Unfortunately, after having a bone scan, it was found that the cancer had spread to her spine. At that time, the doctors thought she had only another 18 months to live, even though Kathryn only found this out later as nobody told her that in person. During this interview, Kathryn read from her diary around the time of her diagnosis where she had written about her doubts of remaining in her marriage. After receiving her diagnosis of metastasized breast cancer she felt encouraged to stay in the relationship. However, last year she decided that she had to leave her husband as she needed to make lifestyle changes to help her fight the disease. Kathryn has now lived with metastasized breast cancer for 12 years and has a lot of experience in managing her own health care. Kathryn learned very soon after her diagnosis that she is responsible for her own care and this means that she has to take certain decisions on her own and that not all professionals take her needs seriously as a terminal cancer patient. She has found an oncologist in Boston that she meets on a regular basis to complement the care she receives from health professionals in Canada.

Kathryn feels strongly that she continues to live to be able to give back to society. This is an important motivation for her to continue to attend the metastasized support group as she is considered “hope in a bottle” as a long term survivor. She is also volunteering at a primary school to teach children about pets and their importance. She is grateful for every single day that she is in this world and to be able to enjoy its beauty.

Time since diagnosis
11 - 20 years
Phase of treatment
Recurring breast cancer

Videoclips

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I wrote this and I don’t remember again this is from June 2003. I wrote this to my husband. (reading) “It can’t be just about you anymore, I’m scared, I don’t want to be sick, I don’t want to be cut up, I don’t want more scars. I’m not going to be the happy one all the time anymore I will change, cancer changes you whether you want it to or not. This is my worst fear, this is a nightmare. Even if I get better, I have cancer for the rest of my life, it is always going to be there. Will I live? Will I have to have radiation? What will I feel like, look like? Will I get fat? Will I lose my hair and youth, then I say and you think about you.” (stops reading) And this was actually, probably I was away when I wrote that.

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You wake up every day and you give gratitude that you have another day, you enjoy every season because you’re never really sure are you going to see the next season. The sad thing, I suppose also, is that I’ve lost so many of my friends with the disease. Whenever I go back to my metastatic group, I go back once a month and sometimes I don’t go anymore for me, I go because I call myself hope in a bottle. And I give hope to the people who are just newly diagnosed. Look there is a possibility that you can be here 12 years later. And I suppose I am very grateful and I express it every day that I’m still here.

I try to give back. I started volunteering last year in a friend of mine’s elementary school because I missed the kids. I missed… there was something that I got from teaching that I needed so I volunteer and I take Sammy with me. I take the dog with me into the schools because I wanted to teach the kids about rescuing animals, about being kind to animals, about how sweet they can be, how quiet and calm they can be and he’s like this in the school. And I give back, I try to give back and I’m back again this year, I go twice/week and it gives more purpose to life because I found not working there was a huge void for me. I believe that having my job as a teacher was a huge part of why and how I stayed in my marriage that wasn’t happy because I got happiness from my job.

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Interviewer: So when your cancer came back you didn’t have chemo and radiation as well?

No they just took the whole breast off. I said forget it this, I should have done it in 2003. All those four surgeries, I should have listened and I should have taken the whole thing off, but again, I was vain at that time. I didn’t want to have a mastectomy, I really didn’t and I was adamant that I didn’t, so that’s it. But, but I really do believe that if I had had a mammogram and an ultrasound and maybe radiation on my breast I wouldn’t have had to have a mastectomy, but it’s in the cards it is what it is. You know what, I got very upset with myself, I made a very big deal about a mastectomy, it really bothered me and because I blamed the doctor and I was pissed off that I listened to the doctor. A friend of mine, I remember, I went to the support group once and she told me she had done her scan and her cancer was in her head. And I said to myself “How could you complain about losing a breast when my friend is worried about losing her life?” And I actually wrote my doctor a letter and I apologized. I said "I made a big deal" I said "It’s only a breast." And that’s why the doctors treat you, to them breasts are nothing you can lose a breast you’re not going to lose a life and it’s true the least of your problems are your boobs and you realize that.

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How many people would say living with what I’ve gone through is a positive experience, but for me it has been, it has been. It’s allowed me to grow and be a better person. I would say I’m a more giving person, kinder person than I was. I stop and smell the flowers more. Last year was my first year in this apartment. I live in a place where there’s tons and tons of maple trees and I’ve started picking up maple leaves everywhere different ones. I’d bring them to the doorman and I would put them on the counter and they thought it was whacked but I didn’t care. I experience, every season is a bonus for me and I enjoy it and I make sure that every day is a good day.

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He sent me to another doctor. Most of them are plastic surgeons and because any time you have cancer, it’s all done here under Medicare, so it’s free. You can choose any plastic surgeon you want. So I went to see the doctor he recommended and he looked at me. He looked at my breast and I don’t even think he really touched it. I just think he looked and he found out it was… I had metastatic disease and he said “The same thing’s going to happen if you put it in again. I recommend that you do nothing just take it out and leave it.” I remember that’s not what I wanted to hear. If you’re vain at all, and I was vain, I said “I don’t want to walk around with a prosthesis that’s moving and I have to worry about it all the time.” Because I knew, a lot of my friends had not done reconstructive surgery. So he gave me no options. Really, he just said “Don’t do anything.” That’s not what I wanted to hear. I went and I started my own research and I found a few doctors. I interviewed them and I asked them questions. I can’t mention names so the first doctor, I said I want my new breast to look like my old breast. I want it to look as natural as possible. "We can’t do that." I went on to the next doctor, the next doctor looked at me and he said “You can’t wear a T-shirt.” I said “You’re correct, I can’t wear a T-shirt, I have one boob in my ear and one boob in my waist, it looks very odd. But, it’s nice that you noticed that I can’t wear a T-shirt.” I said “Can you make my breasts look natural enough that it doesn’t look like it’s…up here?" He says “Yes, I can.” So I ended up choosing him after I had gone back to the second doctor and asked him a few more questions, I decided I didn’t want him.

I went back to the third doctor and I said that I had chosen him. He was one of the most compassionate doctors I’ve ever met. The breast actually does look pretty natural. I don’t know if it’s going to stay that way because you never know with these things. And it was actually this doctor who said that the majority of women know nothing about it, about reconstructive surgery because nobody tells them. And am I happy with my implant? Well, I would prefer to have my breast back but it’s there and it’s easier to dress. That’s what the whole point for me was, just to have it to facilitate things.

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My doctor told me last Monday, when I went to see him, that I’m bankrupting the hospital. That I’ve been on my drug for so long that he can’t believe it. And I know that he looks at me in awe that I’m still here, that I have such a good quality of life and I believe that I’m still here to give back, to help other people, because I never listened to the doctors. In the back of my mind, about 3 years into my disease, my doctor actually told me one day, and he apologized, he says “I told your husband, in 2003, I gave you 18 months. He says. “I’m embarrassed to say that I was wrong. I shouldn’t have looked at you like a statistic.” And even now 12 years later he looks at me and he can’t figure it out. He doesn’t understand why I’m still here and nobody does.

I’ve described it to people who can’t understand what metastatic disease is. “I’ve got a big bad giant inside of me and he’s sleeping and we have to keep him sleeping.” I said “But he could wake up at any time and you never know.” So there’s that cloud. And the caption that they took from me is that even your husband does not understand what it’s like to live with that constant reminder, that constant blessing and curse at the same time. The blessing because it makes you enjoy every single day. You wake up every day and you give gratitude that you have another day, you enjoy every season because you’re never really sure are you going to see the next season and the sad thing, I suppose, also is that I’ve lost so many of my friends with the disease and whenever I go back to my metastatic group, is once/month, I go back once/month and sometimes, I don’t go anymore for me. I go because I call myself hope in a bottle. And I give hope to the people who are just newly diagnosed, “Look there is a possibility that you can be here 12 years later.” And I suppose I am very grateful and I express it every day that I’m still here.

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In April of 2004, because I had had no radiation on my breast, I went back to see my breast surgeon and I asked her, I said "How do I protect myself from the cancer coming back in my breast." Since I couldn’t have more radiation on my breast. I said "What do I do to protect myself?" She looked at me, she took my hand, she smiled she says "Don’t do anything dear." I said "I don’t need ultrasound, I don’t need a mammogram every year?" "Nothing dear." So it was the only time I really listened and I kind of thought because I was on my chemo that that was protecting me. 

So in 2007, 3 ½ years still on the chemo, I, on my way going to Boston because in (city in QC) the doctors never examined you. They were, Medicare makes it be that they see 30 to 40 patients in a clinic and they don’t have enough time to examine each patient. So you tell them how you’re feeling. I suppose if I had felt a problem, I would have told them but I didn’t feel anything. So I’m on my way to Boston, and there, because you pay, the doctor examines you. He discovered that there was something wrong with the same breast and he did a biopsy at the time and, of course, the biopsy came back, cancer was back in my breast. I was beside myself because I said "I knew it, I knew that I should have done more." I was pissed off because I never really listened to the doctors but I listened to this doctor because I trusted her and I really liked her. 

So when I came back to (city in QC) with the results from Boston, of course, as I would say "The shit hit the fan." They ordered every test ASAP (as soon as possible), because they were worried that it had spread further. And luckily for me it hadn’t, every test came back still stable everywhere except cancer was back in my breast.


 

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August the 8th, this was also protocol, they ordered a bone scan and I’d had back pain because I was an avid person in the gym. I was in the gym every day, I lifted weights, I jogged, I was very into fitness and ate right, did all the right things. They ordered a bone scan and the doctor after the bone scan, August the 8th, he says to me, he starts asking me questions about a mark on my rib. "What have you had back pain?" I said, "Of course, I’m 54 years old who hasn’t, doesn’t have back pain, yeah I have back pain." So I’m sitting there and I’m thinking “Why is he asking me all these questions?” And then I realized that the cancer has spread. And he told me that the bone scan lit up like a Christmas tree. 

I had tumors everywhere from my neck all the way down to my sacrum and I started to cry. I was with my husband at the time in the room. I couldn’t believe it because they had never thought that my cancer had spread at the beginning when they did all these surgeries.

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No they just took the whole breast off. I said “Forget it”, this, I should have done it in 2003. All those four surgeries, I should have listened, and I should have said “Take the whole thing off” but again, I was vain at that time. I didn’t want to have a mastectomy, I really didn’t and I was adamant that I didn’t so that’s it. But I really do believe that if I had of had a mammogram, an ultrasound and maybe radiation on my breast, I wouldn’t have had to have a mastectomy but it’s in the cards, it is what it is. I got very upset with myself, I made a very big deal about a mastectomy, it really bothered me and because I blamed the doctor, and I was pissed off that I listened to the doctor, a friend of mine I remember, I went to the support group once, she told me she had done her scan and her cancer was in her head. I said to myself “How could you complain about losing a breast when my friend’s worried about losing her life.” I actually wrote my doctor a letter and I apologized and I said I made a big deal, I said it’s only a breast. That’s why the doctors treat you, to them breasts are nothing, you can lose a breast you’re not going to lose a life, and it’s true the least of your problems are your boobs, and you realize that.

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My oncologist told me in 2003, “No” I wanted to go back to work, “No you can’t go back to work, too many germs, your immune system’s compromised.” And he didn’t think I was going to be alive very long so he said “No, no work.” So I said “Okay” I listened because …I really realized teaching is a very stressful job, I didn’t realize it until I didn’t do it anymore, how stressful it was. You’ve got 30 kids trying to make mincemeat, I had high school, mincemeat out of you everyday. I had one time a kid told me are you going to cry miss? I said I’m not going to cry, I was strict but kind, but I said “No, no, no you’re going to be crying a lot further, sooner than me.” But anyway it’s a very stressful job and he was probably smart to tell me that I couldn’t go back to teach. Maybe if I could do it part-time, but you can’t really do the job that I had part-time because you have a class and the kids in high school they can’t really adjust the schedule very much so, I just didn’t work. And it was probably a blessing.

Audioclips

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Okay for healthcare professionals. I believe, I see the nurses in the hospital and I write them letters, bring flowers, donuts and all that stuff to them all the time. And I find the majority of them are the most amazing people I’ve ever met. They… my nurse particularly never wants to be singled out for a gift for herself, she only, she’s happier if I bring for everybody because she doesn’t want. Because they work as a unit, a lot of times they work as a unit in the hospital, and again this is the institution that I know. I see that one will help the other and they’re all such kind giving people. I think it’s a tough job because they see people dying all the time. And I know that they see me differently. When I tell them I’ve been around for 12 years their eyes perk up and it gives everybody hope. It’s an amazing thing but it’s a very, very difficult job to work in oncology because so many people die. It doesn’t matter, as I say, it doesn’t matter if you’re a happy person or a sad person or if you’re a bitch. It doesn’t matter, sometimes you just die and the drugs don’t work, or it spreads or whatever. I think for them, I think I would say the majority of them are already looking at the person and not the disease. Because, from what I see, they do treat people differently.  You can’t treat everybody the same with a different disease, so I don’t know, it’s a hard one to say but I know that they work with the doctors and they’re very caring people.

And I don’t know, I probably… for them what would help them more is to work less time. Have more people… because now they’re cutting back in hospitals, something terrible. They just don’t have enough help. They don’t have enough in the hospital that they build. They build these huge hospitals, they become too small before they’re even old because of the amount of people that are diagnosed every year, it’s terrible.