Patricia

Patricia
Age at interview
76

Patricia (76 years old) has worked as a coordinator in a hospital psychiatry department and is now an active volunteer in her community. She has remained single her whole life and has no children.

Patricia was diagnosed in 2004 and the day before this interview she had her final check up with the oncologist. Patricia’s lump was found thanks to a screening mammography she had after her physician urged her to go. She strongly disliked having the mammography done. Following the testing, Patricia had a partial mastectomy, and then radiation and hormone therapy which she completed about five years ago. After her treatments, Patricia underwent surgery for breast reconstruction with the hope of improving her fit with bras. Unfortunately, surgery didn’t resolve these issues as she had a hematoma after surgery. Her oncologist advised her to not continue surgery as he was afraid that future screening would become more complicated. Patricia lived through depressive feelings and wept frequently after almost five years on hormone therapy. After a search on the internet, she discovered that this was a typical side-effect of the hormones that she took at that time. She was prescribed medication for depression and still takes this but at a much lower dose. Having been a cancer survivor for about 10 years, she still lives with the fear of recurrence although she tries nonetheless to keep her live as normal as possible and to remain active and vital. For example, Patricia is an active member of cancer care committees in her province, she participated in a research to study the effect of exercise, and she provides support to other cancer patients. She finds that the cancer care in her province is much better now than 10 years ago when she received her treatments and she is happy to contribute to that.

Time since diagnosis
11 - 20 years
Phase of treatment
Remission

Videoclips

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One of the great things, when the Cancer Centre here really was moved all into the one campus and opened in a new building, was that, there’s a researcher who also specializes in breast cancer and she really felt that exercise that cancer patients should be able to exercise and she started it with breast cancer patients as a research study. It then got to be any cancer patient who was referred by their oncologist. I went there for 5 years and then it ran out of money and let me tell you, I’m in pretty good shape given my age, a lot of it because of that. When I, before I retired, I used to walk back and forth to work an hour each day. There are reasons for that, one it gets you ready for the day, walking is the best exercise you can do, and walking home kind of gets rid of you all the nuttiness of your day. I needed something after that so I tried a couple of local gyms. They’re very expensive these things. We could go to this gym free until the study ended, until they actually ran out of money and it was run by a kinesiologist. 

The other thing that did and it was the only one in Canada by the way. The other thing that did was to provide a sort of informal supportive group. We could talk to each other about fears or anxieties or "Oh I’m going for my mammogram tomorrow or I’m going for a colonoscopy tomorrow." "Okay well we’ll ask you when you come back" So the next time "How did it go?" You’d want to know. Funny things happened, we would, we laughed a lot in these things. I remember there was one… and some of these people I’m still, some of these women I’m still in touch with them. I remember one of them saying one day when the kinesiologist we were doing group. We could do our own exercise and then the group, if we wanted to and she said "Okay we have to get down on the floor now" And one of the girls on the other side said "If I get down on the floor it’s going to take a crane to get me up off here" Just that sort of thing. There was another girl whose hair was coming back, her chemo was over and her hair was not quite grown back and she was wearing a wig and we all had water bottles and she used to come in each day and she’d put the wig on top of the water bottle and just leave it sitting there. I still think of her like that and she’s doing well.

 

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I had been away from the church for a long time. I’m a Catholic, Roman Catholic, and I had just decided a few months before that that I wanted to go back to church and I did. I have since discussed that with the man who was my pastor. Not long after that I went to a church near here, and then one even nearer after... which I didn’t know about, I didn’t know about the one I’m at now. He was the pastor there at the time. He has since been transferred to Toronto but has remained a good friend whose guidance I value. He said to me, I call that sort of thing small miracles, when you go... when... I didn’t...so I didn’t go back to church because I was diagnosed with cancer, I went back before and then I was diagnosed with cancer. And somehow there was a certain amount of strength included in that after I was diagnosed. I think faith helps people a great deal.

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You know, I’m not depressed. I don’t feel depressed but it’s interesting that when I first started feeling that there probably was something going wrong I’d be sitting and I’d all of a sudden just start to weep. Not just crying, but weeping and I thought this is just odd and feeling a bit, what you’d call, down. So I looked a little more carefully at the side effects of both tamoxifen and Evista (raloxifene) and sure enough there it was. And then I checked sites that will give you the adverse effects. Actually the Canadian Government has a very, very good website where they list adverse drug effects. So if you have had an adverse effect or you’re concerned about this, it might be one you can go and put the name of the drug in and it will tell you if they have had these reported to them by physicians all across the country. And so I looked on the sites where there were adverse drug effects listed for both tamoxifen and Evista and sure enough women described this weeping sort of thing and feeling down so that was when I knew that that’s what it was from because I’m not that sort of person. I’ve never really had a depression.

 

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I’m on the Patient & Family Advisory Council at Cancer Care Ontario as well as for the Regional Cancer Centre here. In Canada we’re behind with patient-centred care. Somehow over the years we’ve given over our care entirely to healthcare providers and that’s not right, it shouldn’t happen entirely. Yes they’re trained, they know better but I know my body as well as anybody and I want a say in how my medical journey goes wherever it is. I’ve always had that with my family physician, she respects people. I think that hasn’t always happened. It certainly doesn’t happen in the medical profession always. it’s not all of them for sure, not all oncologists and not all nurses, but it requires a huge culture change and it doesn’t just require a culture change on the part of the healthcare provider, it requires a culture change on the part of patients. You need to be responsible for your care, so if you are ill you need to do something about it and then you need to share in the care and the treatment if that happens and for cancer patients that’s extraordinarily important. People have the right to refuse chemotherapy, they have the right to refuse radiation if they want to. It may not always be the sensible choice but the point is they have the right to do it. What the healthcare providers need to do is to make sure that the patient and family has the information they need to go ahead and make their decision and then to help them make that decision, to make the right decision and to make it through. I know people who have refused chemotherapy when it was recommended, and again that’s a personal choice. Some people look at it as toxic. It is toxic. Radiation is toxic and nobody was meant to have that kind of radiation put in their body but it’s better than dying because that’s the alternative as far as I look at it.

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Yes don’t treat them like children; don’t treat them as though they’re going to die. Be as helpful as possible, be sensitive to feelings they’re having but don’t be condescending, don’t be “Oh you’re going to be fine.” or “Oh you’re feeling bad let me help you.” Be as positive as you can with them. If you think they need help that they’re maybe not acknowledging, sit down and talk to them about it. Don’t talk to somebody else behind their back, talk to them about it. If they don’t want to listen to you then maybe go talk to a husband or a wife or a mother or a father or something like that. Go with them to appointments if they want; if they don’t want you to go don’t push. Encourage them to keep doing things, to get up and do things, to go and be busy. If you want to do something for them, give them a gift for a day at a spa or something like that. I mean, if you’re having chemo or you’re feeling down in the dumps or something like that I can’t imagine anything nicer than going for a day at the spa that somebody else has paid for. So if you’re a caregiver, whether that’s a family or non-family caregiver think of the care part of it…and the giving part is what you give to them to do but don’t force it on them.

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I’m, it’s not all of them for sure and not all oncologists for sure and not all nurses, but it’s a, it requires a huge culture change and it doesn’t just require a culture change on the part of the healthcare provider, it requires a culture change on the part of patients. You need to be responsible for your care. So if you are ill, you need to do something about it and then you need to share in the care and the treatment if that happens. For cancer patients that’s extraordinarily important. People have the right to refuse chemotherapy, they have the right to refuse radiation if they want to. It may not always be the sensible choice but the point is they have the right to do it. What the, what the healthcare providers need to do, is to make sure that the patient and family has the information they need to go ahead and make their decision and then to help them make that decision, to make the right decision and to make it through. I know people who have refused chemotherapy when it was recommended; again that’s a personal choice. You have to decide. That it’s, some people look at it as, as toxic. It is toxic. Radiation is toxic, nobody was meant to have that kind of radiation put in their body but it’s better than dying because that’s the alternative as far as I look at it.

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If you can’t do them as energetically as you did, do them a little less. That’s why I say go to the gym, exercise, and if you don’t like going to gyms, walk. Women run, they run before, during and after treatment. I just don’t think you should just stop dead. I mean, if you just stop everything you’re doing, that’s not going to make the cancer go away. It’s there, it’s being treated. Yeah, your energy is not going to be as good for the first while, but just do as little or as much as you can. If you’re married and you want to use it as an excuse for somebody to clean your house, do it. But if you want to keep cleaning your own house, clean your own house. I do think exercise is important, I mean, the research studies that have been done here and that they’ve now started to do in other places, indicate that exercising during cancer treatment has no ill effect on you whatsoever. You may feel ill while you’re having the treatment, but it’s not from the exercising and the exercising is not going to hurt you. And you don’t have to exercise as heavily as you did before at all. Go for a very slow walk on a treadmill, that’s the most boring thing on the face of this earth, but if that’s what you can do, then that’s what you need to do.

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It does, yeah it does and they know it’s a long-term effect. Oncologists know it’s a long-term effect. Researchers are now really looking into it. We’ve discussed this quite often on the Symptom Management Committees for Cancer Care Ontario and that’s a huge topic right now for long-term survivors. Why do I still have this? To be tired is one thing, you know you’re tired, you get some sleep, you get up the next day, you’re fine or maybe 2 days, but to be fatigued is to just not have energy. I was talking about it to my oncologist yesterday and I said to him, “It’s like if somebody calls you and says you have to get out, the building’s burning down.” You want to say to them, “Let me know when it’s closer.” You know that sort of thing. It’s just, you don’t want to move, you do not want to move and physically you feel like you cannot move. Whereas if I’m tired, I’ll still go to the gym. If I’m fatigued I cannot go to the gym.

 

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The other thing he said to me which is really, I think important for women to understand is, he said “Don’t think of this as a lumpectomy. Don’t call it a lumpectomy. People will call it that, it’s not. In our terms this is a partial mastectomy because what will happen to your breast surgically and what you will have left is not going to look like the other one or like it did before, you need to be prepared for that.” He was quite right. It didn’t, but it’s a day surgery, you come home. I think my friends were more, probably, worried about me than I was but there’s always that worry in the back of your mind. Now I have to wait 5 business days for the report to come in. Well when it came in it was the lymph nodes were clear and the margins were clear as far as they could tell. So that was good news.

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This long-term fatigue which is now being investigated by a lot of researchers, in a lot of countries, because they’re not really sure what the whole syndrome is. I know that it exists. It’s not just me, and for example, maybe 3 weeks ago it just hits all of a sudden. It’s fatigue that says… I can’t get from my den which is, this is a two bedroom apartment, there’s not a lot of room in here. I don’t want to go from there to there to make something to eat. I’ll just ignore it.

To be tired is one thing. You’re tired, you get some sleep, you get up the next day you’re fine, or maybe 2 days. But to be fatigued is to just not have energy. It’s kind of as, I was talking about it to my oncologist yesterday, and I said to him "It’s like if somebody calls you and says you have to get out the building’s burning down." You want to say to them "Let me know when it’s closer." That sort of thing it’s just you don’t want to move, you do not want to move and physically you feel like you cannot move.