Table 1.

Selected quotes related to health-care experiences

Theme	Selected quotes
Diagnosis	The doctor just looked at me. And I’m telling you that, if it wasn’t for him, I’d probably be gone by now. And I’ll never forget he said this. He told the nurse, he said, “Something’s wrong with her.” So the nurse got me on a gurney. So he did the rectal, and I’ll tell you from there is where my story started. That doctor barely put his gloved hand, you know, one finger in my rectum, and I could feel something happen, and I was so embarrassed. I figured it was stool. So he said to me, “what you feel here, it’s not what you think it is. It’s blood. I just touched something, just barely, with the tip of my finger, and it ruptured. And I’m taking you personally on this gurney to the surgical room, and we’re going to see what you have down there.”
	I was going to bed after watching the 11:00 news. Maybe about 10 min before the end of the program, I could feel that I had to go to the bathroom. As far as I remember, I didn’t even touch the seat, but just as I was lowering myself, all this blood rushing out. At the emergency room I had the urge to go again to the bathroom. They took me up and wanted me to stay for the night. So I was there taking all those tests for, I think it was, 5 days. They came back, and it was just that one spot.
	I come from a family where there’s a history of cancer. My mother and sister both died in their fifties. I was sixty-two with a black cloud over my head. I noticed blood in my stool 1 day. I couldn’t see my doctor for a couple of weeks. The next day I still had more blood and I had a friend who was a surgeon. So I called him and he said, you get down to my office tomorrow. So I went down. Anyway, I saw it so early because it was so close to the rectum.
	I had a requisition to go get a sigmoid—and I was hesitating to go—my own fault. I was busy taking care of my mother and my daughter. My daughter’s disabled, and my mother had Alzheimer’s. And I put it off, which was my own fault. So, they could tell right away, when I had the sigmoid, that I had cancer.
	I had just turned 50 and I just had had trouble off and on for several years of bleeding off and on. And then I had gone to a surgeon, just a couple of years before they found the cancer and they said they couldn’t find anything. And then I got to where it was just bleeding all the time and I went back and they were able to find it.
	Mine was a fluke, just thinking I had one thing and actually found out it wasn’t that, it was something totally different. And asking a question and having a doctor that actually cared enough to send me for more stuff.
Treatment decision-making	When they say you’re going to get this surgery—you’re going to have this surgery right away. You want it tomorrow or the next day—you really have no time to think if you really need surgery.
	I went in on a Friday, and they said they needed surgery from me on Monday. And I didn’t feel there was any reason not to have it, because my back was to the wall at that point. So from there, I just went with it, and I’ve gone with it ever since, and I have no problem with it.
	What I did was I had looked into physicians—what I know about medicine that says that there are some doctors who are better than others. They’re not all the same. So, I had everybody I know check out—checked out who was the best surgeon.
	The surgeon kind of indicated it was easier to do surgery before the radiation had caused scar tissue. So we had surgery, and then following that was radiation and chemo at the same time.
	They probably wouldn’t have had to do that surgery, but I opted for that even though he said, well, I probably get chemo and radiation and stuff, but with my family history, I said, take it out. I’ve never been sorry.
	I don’t think anybody meant any harm by postponing. I think they really thought they could put me back together without resorting to that. Nobody knew; I don’t think you can always know everything. Of course, on the other hand, when he put me back together, and I woke up, and I didn’t know if I had a colostomy, I said, “Do I have a bag?” …. they tried to put me back together twice without resorting to it. And they thought they were doing the right thing. And this was one of the cases where you really couldn’t do that—then I can say I didn’t have any control.
	It was starting already to travel into the muscle wall. I asked him later, did I make the right decision? And he said, there’s really no way to know. There’s no way to know how long you’ve had this. There’s no way to know if it was, but the only true point of knowing it’s gone is to remove it. So the only choice I thought I had at the time was that.
	I had a doctor tell me the history of my surgery. He said it was done in 1917—and it really sounded good to me because it might mean it’s successful. And he said that when they first used it, they had to do the surgery in three-quarters of an hour or the person would die from loss of blood. And now, they take their time, and they have clamps to clamp off the blood flow and all that—so they can do a better surgery in more time. And that relieves me quite a bit—just to tell the history.
	He (surgeon) spent a lot of time with me, and he told me exactly what to expect. And, you know, he said, “This is not going to be reversible,” as sometimes it is, colostomy. And he said, “You can’t expect that.” And he explained why and so forth.
	And then eventually I had the surgery, about 10 years ago, and I’ve had chemo and radiation. I always thought, years ago, “Oh, the worst thing that can happen to a person medically is to have to have a colostomy. Wouldn’t that be awful?!” And it’s not awful at all. I’m just very grateful that I’m here.
	When the doctor called me to say it was cancerous, I kind of joked and said, “Oh, well, they’re just going to cut it out and sew me back together again.” “No,” he said, “You’re going to have a colostomy.” I mean, I knew some basic things about it, but I really didn’t know all the ramifications.
	They realized they were going to have to do the colostomy. I was a teacher and I just said, “Could you just wait until June?” And they said it was very slow growing, so I just asked them if they’d wait until June, until school was out—which they did. So I had it at the end of June.
Initial experience with ostomy	We had the greatest ET nurse. And sometimes I think if it wasn’t for her, I would have been in a looney bin.
	Ten days later I woke up…had this thing on the side of my body and I was not too happy with what was going on, but she said not to worry about it. Before I even left the hospital, she showed me how to irrigate and to cleanse myself, and that type of thing. A couple of times we did that and then I went home and 3 days later I called her and said, HELP! So she came out to the house and we went through it again.
	Then when it was time to show me how to irrigate, this really lovely nurse brought her student nurses with her. Well, not only did she not know how to do it, but obviously they didn’t know how to do it. That was a charming, charming experience. So the doctor came in the next day and said, now did you learn how to do this, this, and this? I said, I didn’t learn anything. They gave up and went home, I guess. So he sent somebody else in that did know.
	They act a little embarrassed about it—the nurse that came—she acted embarrassed. And it’s like, “Well, wait a minute, you’re a nurse.” You know? Please don’t make it worse. I guess she’s doing the best she can. And if you’ve never had any experience with it, how do you know? What do you know to tell people?
	When I came home from the hospital with the colostomy, they sent me help. She was an RN, and she would take my blood pressure. And I said to her, “What I really want to know is about colostomies.” And she said, “Oh, I don’t know anything about that.” And I said, “Well, don’t come anymore.” And she said to me, “What do you care, you’re not paying for it.”
	I think in a perfect world, you would have a nurse who has had a lot of experience. And I think most nurses do—not all of them. At the hospital my daughter works, there’s no ET nurse. But sometimes, when you want to change a product, and it’s that the nurse may not be available immediately, there may be a communication problem in terms of what the appliance that you’re looking for—whether it’s there or not. Or you even don’t know what may be available. These are things that need to be worked out, I think.
	That male nurse in the hospital. He’s the one that first…showed me how to change…And it was a one-piece at the time that they had me on, which I didn’t know anything other than that. But he showed me how to clean it, how to make sure it was dry before I put the ostomy part on and…if it hadn’t have been for him, I probably wouldn’t have been as good as I was when I went home. But the second gal that I connected with, and with the two piece system kind, said this is another way to do it. And when I connected the two-piece and put in the wafer and using the bag like a Tupperware thing, that was just totally like, why can’t they have given me this to begin with? It would have been SO much easier.
	They sent me a nurse at home. But when I would ask her real practical things—like, how do I clean this thing out—I got more information from the woman who called me, who had one—who said that you have to take a big cup of water, and fill it up…You know, real practical things, like how do you clean out this thing? What do I do? I take it off and clean it out in the sink? Well, how do I clean this thing out, you know?
	It’s just the availability of information. Because at the time my surgery was coming through, they didn’t think it was…that they’d have to do it. But I didn’t even know what it was. And the people that were around at the point, I didn’t know who to ask. It was after the fact of the surgery, and even a couple of weeks after that, and one of my first checkups with my surgeon that I actually met up with the ostomy nurse. And she had a huge book and it was like, well, here’s the products. But it was like, okay, what am I supposed to be doing that I’m not doing already. It was like my questions weren’t totally being answered.
	When I was in the hospital, I did have a visit from somebody who just kind of stopped in and said, do you have any questions? And at the time I knew nothing to ask.
	A friend of the family had someone that she knew that had a colostomy and came in and talked to me and told me about the two piece systems, so that’s what I’ve been using ever since.
	When I got home, after the surgery, I spent a lot of time on the internet and did a lot of research there. It gives you a lot of basic information, but it doesn’t give you the little tricks of the trade. All those you learned over the course of time.
	Just the whole thing of adjusting to it—was really helpful, to have somebody who’d been through it, giving me some ideas about how she adapted to it—clothing-wise. She told me she wore jackets a lot. She gave me quite a few hints on the clothing. And it was really helpful, to have her call me.
Survivorship	And I asked the doctor later, “Do you think because we did that experimental chemo protocol that almost killed me—do you think that’s what saved me?” Because the cancer was in the lymph nodes and stuff. And he said, “Oh, it’s just the luck of the draw.” He was a fine oncologist. He just wasn’t a people person.
	Well, you know what’s happened with my experience is my great primary doc left. I’m on my third primary doc since the surgery, and she doesn’t know me. I mean, all she knows is this healthy woman who walks in and, obviously, I have an ostomy.
	They have to study your chart once in a while. I’ve had doctors that I go, and they want to put a finger up my rectum. And I don’t have one!
	I got into an ostomy group. It was a VERY open informative group. We had a couple of ET nurses that came in and offered help.
	There’s a lot of products out there, a lot of companies. But I really didn’t want to change because I’m so used to this—and I do not want to make any changes. So, I just kept with what I’ve got.
	There’s all kinds of information there. It’s just judging what’s right…you’ve got to read it all and just evaluate it for what’s going to work for you.