The conversation below is taken from two separate (participants were not together) research interviews with patients and their caregivers. Unique to these transcriipt sections (recorded and transcribed)—both participants have cancer AND care for the other. The study sought to learn if patients and caregivers are similar in their approach to and understanding of care, or different.
Apply ideas from the Relational Health Literacy Model, specific to Patient and Caregiver, to complete this analysis. Also integrate one other resource we used in Week Four or Five. You may also consider the role of transactional communication in your analysis.
Harold: She went through, you know, radiation. She went through chemotherapy. Umm, she had the initial operation, which was in January 2011. She had ended up in the emergency room over here like four times. And finally they decided they needed to go back in, and she didn’t weigh very much at the time. She was like 107 or 110. They indicated that there was a bowel obstruction so they fixed that. But she’s still going through, uh ovarian, there was some cancer in the liver too. So they had the operation; they took a couple of pieces of the liver out.
Harold: I think it just started with uh you know just a yearly exam. Maybe that might have been 10 years ago. And, the guy, the doctor said, “uh, you have a slightly enlarged prostate” . . . so that’s where it started. Two years ago they found uh, I had a needle biopsy, where they shoot ah, you know, um a-a laser beam or whatever and they found that there was some cancer in the prostate you know. And then we started talking about whether or not, treat it with drugs or do um, do the seeds where they put seeds into the prostate, or just completely remove the prostate. It just so happened that you know after my next exam they said we’ll wait another 6 months and do it again. To see what your PSA level is, and that became pretty high and then all of a sudden they said well we can’t do the seeds anymore and chances are we are not going to be able to remove the prostate either. So, we’ll just you know use drugs and things to take care of things.
Harold: At first she kinda said, “I don’t know if I really want to go through this [surgery]. You know, she had radiation, like in 2010. And a few other things. And then it got to the point where, you know, the doctor that was there kind of, he, you know he actually talked her into saying you shouldn’t do it [remove part of the liver]. You know, otherwise you’re gonna die. You know, you’re not gonna make it. Cause it’s gonna get you. So it was pretty, it was like, um, you know, like fourth stage cancer. She was real reluctant. But I kind of told her it. I think I persuaded her enough to have the operation.
Harold: I was really the only caregiver, you know, cause we had no other family that lives around here. As for her, I don’t remember anybody driving us anywhere or doing anything. She drove, you know. She really took on the bulk of the caregiving. I’d say she took on 99%, yeah. Her sister, who lives in Illinois, and my sister, who lives in Illinois, and our daughter who lives out in California. They know, they get first-hand knowledge. We talk to them. You know, it might be a few days later. We don’t pick up the phone and tell them, you know, that we had, uh, had this and that. You know, not daily or weekly. Not as much as, you know, uh, you know, a close family. If they ask me something, I say, “We’re fine. You know, we went to the doctor and he said this and that.” And I don’t go through you know, what happened daily. She’s [Vivian] much more of a sharer.
Harold: It’s about even. You know, I mean, we both, you know, we both ask questions and things, so, you know, to the doctor or nurse or whatever. I might go 60/40 in my favor. Especially when it’s in regards to her, because I want to know how she’s doing. I always try to interject things that she might miss, you know. They might say, “How are you . . .”, How are you doing in a certain aspect. Like, “Are you dizzy?” And she’ll say “No.” and I’ll say “Well, you know, two weeks ago you didn’t feel too good.” So, it’s filling in the gaps.
Vivian: He was having trouble getting up at night and going to the bathroom and couldn’t go. He was feeling like he really had to go and couldn’t go then it’d be a drip. Well, we didn’t know a urologist or who to call. So he called up that doctor that did his double hernia surgery and they sent him over to a doctor and they did the PSA and I don’t remember. They did several different tests on him. X-rays and stuff. And they came and said it was prostate cancer. Oh, I know what they did; they did biopsies. At first they thought they were going to do the seed thing, but when they did the biopsies it was too late for that. That was this year. During the summer. And he is on some hormone therapy. Every three months he gets a shot and chemo.
Vivian: I think this had been going on a while before he actually told me about it. Then I saw some blood come out on his underwear and he hadn’t said anything. I got on him about that. He usually, he just doesn’t like to complain. The last couple of days he had been tired. I can understand now, but he never complains. He tries to protect me.
Vivian: He didn’t eat very much and I said, “doesn’t it taste very good?” and he said, “nah, I’m not hungry.” And I said “well that’s kind of unusual” because we don’t get up very early. We don’t get up until maybe 8 o’clock. We have a big breakfast. We always have fruit, eggs, pancakes, there’s always meat and we don’t really have lunch but we don’t finish breakfast until ten and then we have dinner, trying to eat around 5. So, when he gets off the feeding wagon, I start asking questions. “Nah, I’m just not hungry. I haven’t done enough to be hungry.” So, I just have to kind of watch him.
Vivian: We each have a sister. They both came because I had four surgeries in one year. They came and helped out. Well, twice they came. Our neighbors next door. They are really our support. Our families aren’t that big. Maybe once a week we’ll talk. Either they call or we call. But they are pretty busy.
Vivian: We are both there to hear it. Sometimes that’s good because sometimes you don’t hear everything. I hear it one way and he says, “no, I don’t think he meant it that way.”