My name is Esther, and I'm a breast cancer survivor. In the next few minutes you will hear four individuals share their experiences as caregivers. The discussion you are about to hear centers around the key point of bridging the gap between open communications and meaningful dialogue with spouses, family members and friends.

Andrew Schorr, a medical broadcaster, who was diagnosed two-and-a-half years ago with leukemia and so far has not had to undergo treatment at this point will be the host and discussion leader. Kay, from Missouri, was a full-time caregiver to her husband who died of carcinoma in 1990. Since then, her mother and son have also died of cancer. Ken, from Maryland, is a full-time caregiver to his wife Shirley, who has dealt with colon cancer. Mary Ann, from South Carolina, is the caregiver to her husband, Jack, who was treated for non-Hodgkin's lymphoma with surgery, chemo and radiation treatments. And, Tim from Pennsylvania who is caregiver to his wife Nancy, who was diagnosed and treated for breast cancer fifteen months ago.

The discussion you are about to hear is unique in that it represents the views and opinions of real people living with cancer. The views and opinions expressed do not necessarily represent expert opinion, or the opinion of the American Cancer Society. What you will hear represents what has worked and not worked for others dealing with cancer. As you listen you will hear how these individuals have dealt with cancer in many unique ways. You determine what is appropriate and relevant for you. We hope the information is helpful and welcome your feedback.

Ken, Maryland

ANDREW:
I'd like to begin with Ken from Maryland. As we talk about from the caregiver's point of view, what to say and what not to say, with Shirley, your wife, first of all, are there things you've said or chosen not to say?

KEN:
We've kept an open dialogue, and the one thing that we need to caution ourselves on is that we can't surmise or guess what's going to happen tomorrow, we have to deal with the facts of today. Her outlook has been, all along, "I'm going to beat this thing one way or the other." And I've been with her on just about every doctor's visit and every hospital stay that she's had, mainly from the standpoint that I want to stay abreast of what's going on so she and I can plan together. And that has worked out very well.

ANDREW:
How has your communications changed over time, from time of diagnosis?

KEN:
Well, I think it has brought us closer together, the one thing that we kind of guard against is presuming as to what's going to happen tomorrow, because that's scary! I mean, you know, cancer itself is scary enough, without having to, uh, throw imagination into it. I'm a retired engineer, so I deal with facts, so what I try to do is keep the facts in line, and we work with those. My kids tell me I'm in denial, but I say, "No, I'm not in denial, she's had cancer, something is going on, and right now that's all I know." And that's what we deal with.

The one thing I don't want to do, for example, is let my sorrows come to the surface because she has such an upbeat outlook, and I don't want to ruin that. I try to be upbeat with her.

ANDREW:
Well, that relates to what not to say. So are you suggesting that if you're feeling down about Shirley's illness, that you don't talk about your feelings for fear that that will affect how positive she feels?

KEN:
To a point. I don't like to express my fears about what's going to happen tomorrow, because I obviously don't know what's going to happen tomorrow. So what I do is say, "Well, okay, this is the situation now. There is or is not cancer. The doctor told us, you know, there was and you need an operation and so-and-so." So I give her a hug and I said, "Okay, we're together here, kid. We've been together for almost forty years. We're going to stay together and go through this as a team." And I think when you can depend on somebody to do that, it takes some of the scariness away. That's been my experience.

ANDREW:
What would you say generally that has worked for you and Shirley that you would recommend to them as far as what to say and what not to say?

KEN:
The one thing I'd suggest for them to do is to get involved. Get themselves educated on what's going on, and maybe the doctor can give a long-term prognosis or what the options are. And then between the two of you, the caregiver and the patient, discuss those options and see which is the most viable for the two of you.

ANDREW:
Thank you, Ken.

Kay, Missouri

ANDREW:
Now Kay, I know your husband died of cancer in 1990, then your mother passed away, also of cancer in 1991. And compounding the tragedy is the fact that your thirty-four year old son died of cancer in 1991. As you've gone down this road, how difficult was it for you to even talk about the cancer that they were facing?

KAY:
Very difficult. Especially with my husband. We had always been really close, but whenever I went to broach subjects with him like funeral arrangements and things, when it got down to where they said he was not going to live, he wouldn't deal with it. He didn't want to talk about it. So afterwards then I'm kind of floundering around trying to figure out what to do and what not to do. And I think that your communication has to start as soon as possible when someone is diagnosed, and it needs to be an open discussion about everything.

ANDREW:
Were there some things that you did with your family members who were facing cancer to make sure that you communicated, like a certain time of day or a certain mealtime or something where you just, in your own mind it was a time to really discuss things openly?

KAY:
I think that when there was an opening in the conversation, that something would click and I would try to bring it up at that time. Like, you know, somebody would say, "Well, this person is sick and going to die" well then I would try to bring it up, you know, we kind of need to talk about these things. And I probably didn't do it in the right way, maybe that's why I was unable to get my husband to open up.

ANDREW:
Kay, what would you recommend to other caregivers if their loved one is in denial about them having cancer?

KAY:
I think if you just love them and be with them and tell them that, you have to face it, and a good outlook is one of the best things there is. The more you deal with it and know what you've got to deal with, then the better you can deal with it.

ANDREW:
Holding back information, though, is not something you would recommend?

KAY:
No. I would not recommend that. I know how I would feel. I would want to know everything that was going on, I would want to know, you know if I'm going to die I want to know, and I want to know why.

ANDREW:
Kay, we're going to come back to you.

Mary Ann, South Carolina

ANDREW:
I'm going to turn to Mary Ann whose husband was diagnosed four years ago with non-Hodgkin's lymphoma..

So, Mary Ann, over these four years, what have you learned about what to say and not to say?

MARY ANN:
I would just go back a little bit and say, we have two adopted daughters. And from the onset of our counseling before we got our first daughter, we were told to use the word "adoption." And initially we kind of choked it out, because it was a difficult thing for us to say! And then gradually it came very easily. So I think when the word "cancer" came into our lives, it wasn't so difficult to use the word. So we have been trained to name it. And so the word "cancer" had always been used.

One of the things that I am not comfortable and never have been comfortable with saying to Jack is calling it "his" cancer or "his" disease, because I decline to give him ownership for it, and I think if he owns it, it belongs to him, and I want the disease out of our lives. And I don't think that's denial because obviously we face the fact that he did have cancer, that it was life-threatening. We took every possible avenue to healing, including counseling, spiritual help, and of course medical help, and it seemed to have worked very well.

The other term that I never used and I'm not really comfortable with, is "remission." We believe he is healed. The term "remission" sort of has a connotation of being dormant and kind of like hiding behind the bushes or something, and we just believe that he's healed. We know that there's always a possibility that the cancer will reoccur, but if that day ever happens, and we pray it doesn't, then we'll deal with it at that point.

ANDREW:
When Jack was first diagnosed, how open were you in your discussions then, and how has that changed over the last four years?

MARY ANN:
We've always been very open about the disease, so I don't think anything has ever changed. But I've always felt that it was my responsibility to support him, to be affirming and positive in the healing process and in the steps that we took psychologically and medically and spiritually to affirm the healing.

ANDREW:
Do you talk about your feelings when they're not entirely positive?

MARY ANN:
I guess so. We did, have rather extensively counseling while he was in medical treatment. So it was very frequent that we met with a psychiatrist, like on a weekly basis, even when he was very, very ill. And even now, you know, among cancer patients, former cancer patients, there's a real concern when a bump arises or an ache happens or something like that. And I know that this is very normal for survivors to be very concerned when they have an unusual cough or whatever, and I just really try to be very affirming and positive.

I also encourage him to see a doctor if he has a concern about the reoccurrence of the disease.

ANDREW:
Mary Ann, do you have any specific stories about communication between yourself and Jack? Or with others that were either let's say awkward, at first, that you know, had value and you learning from and you would share that with others?

MARY ANN:
I had a friend whom I had known for many years, and she was a nurse. And she didn't call when the diagnosis first came to us. And I was a little concerned, but of course I was very involved in getting Jack better, and in the healing process. And so I really didn't make an issue out of that. And after a several month interval, she called me and she was exceedingly apologetic, and she said to me, "You know? It just was too close to home and I couldn't deal with it on a personal basis. I hope you'll forgive me." So yeah, as I said, her nursing experience has probably terrorized her with the thought of what might be in our situation. But that was really the only one.

A positive thing happened, though, and I want to kind of stick this in if I may, is that we had friends who were very supportive and they would do things to encourage Jack to prepare for a positive future. They would kind of dangle carrots in front of him and say, "You know, when you get better we're going to do this. And when you're strong enough, we're going to go out to lunch." And so-on and so-forth. So it was always something in a positive vein to look forward to, as the healing progressed.

Tim, Pennsylvania

ANDREW:
Tim is joining us now. Tim is thirty years old and is in training to become a physician's assistant. His wife, Nancy, is a registered nurse. Tim and Nancy have been married a little over a year and it was just a few weeks before the wedding that Nancy was diagnosed with breast cancer. Tim, why don't you tell us about that first, then tell us about being engaged to the woman you love, having cancer intervene, and then, how do you talk about it?

TIM:
Okay, well, um, first, you know everything was just fine and normal with our relationship, and then we went down to the shore to apply for our marriage license. Everything was just a fine, great day. We took her mother with us and we had lunch and everything like that. And then we came home and were sitting down discussing our wedding plans, and then she tells me that, you know, she feels something in her left breast and wanted me to check it out. So, you know, we feel it and it is a solid mass, and next day we go to work in the operating room, and she goes up to the physician, makes an appointment, finds out about two hours later that she has breast cancer.

And then at this point, I had left work and I was on my way to school. So I couldn't find out until about 9:30 at night, and by this point she was, you know, a complete wreck. Understandably so. And it just hit me like a ton of bricks. You know, walking through the door thinking everything was okay, you know, being genuinely concerned about it, but her not having a way to get a hold of me while I'm in class. I was sort of, you know, pining over it throughout the whole time, and then to come home and to just hear those words, "I have cancer." Everything had just gone black, everything had stopped. It was like walking into a time-warp. It was like, did I really hear that correctly? And I made her repeat it again.

And then from that point it just became, okay, what do we do from here? Let's do what we have to do to get better and take the necessary steps to prolong your life and our life together. And do the best we can by speaking to all the physicians and doing all the research that we could.

And I guess the big advantage of working in an operating room is having the availability of several physicians and other caregivers to, you know, see what their thoughts are on the matter as far as chemotherapeutic agents and radiation and surgery and stuff like that. And that really helped out a lot.

ANDREW:
Tim, there you were, two months, right, before you were to be married. Did the diagnosis of cancer get in the way at all?

TIM:
I posed the question to her first, you know, if you don't want to go through with the wedding at this particular date that we had set. We can always back it up. Or we can get married tomorrow, you know, before everything starts. You know, it's not going to change my decision whether or not I want to marry you. And it sort of slowed things down a little bit. We had to schedule her chemo to be finished before we had gone away to get married, so that in turn had to move up the date for all the surgeries and all that kind of stuff. But it didn't really get in the way, so to speak.

Tim, Pennsylvania

ANDREW:
How have you communicated in this where you're building a marriage and communications is often something we who have been married longer have had to work on a long time? How have you factored discussion about the breast cancer into that?

TIM:
Well, I was married previously for five and a half years, before I met Nancy, and I had told Nancy that when I had met her that my first marriage ended pretty much because there was lack of communication. And so when we were dating and just getting to know each other we had discussion on just talking about anything that on our mind, right off the get-go. You don't like the way I put on my socks on the other side of the room, or something just as small as that just let me know about it and we'll work on it as things come up.

So when cancer came around and discussions about having children and treatment options and stuff like that, and just all out fear, we had always just put our cards right out on the table and said, you know, anything that came into our minds, and just dealt with the questions as they arose, really straight forward.

ANDREW:
What would you say, in dealing with this key question of what we're discussing today, is what to say and what not to say? Are there any bounds or what you say? Or do you just say whatever is on your mind, for her and for you - positive, negative, or in-between?

TIM:
Sometimes I let her start with the talking, because I learned that some things you probably shouldn't say unless they really bring it up, especially with cancer. Something which, you know, may seem trivial to people that are not in this sort of big circle that all of us are unfortunately in, is about hair loss. And, you know, when she had lost all of her hair and we got married she had only, you know, a wig, and she looked fantastic, I thought. And then her hair started growing back. But then, her hair was growing back curly and it was just like all scattered everywhere, and I said, "Hey, look! At least you have hair!" And then she came back to me like, you know, a ton of bricks, "What do you mean I have hair? I'm tired of hearing I have hair." So that's one thing I know, where I probably shouldn't bring that up. It may seem small to other people, but to someone who's going through the cancer themselves, it's a pretty big deal, it can really set them off.

ANDREW:
Now, what positive or enlightening things have friends or others communicated to you or to her that you've thought, "Gee, that's really helping. Saying that is really helping."

TIM:
I think a lot of it, especially from the close family, was just a phone call to say, "Hi, how are you? How's everything going?" and then just listening from that point on. Because there were some friends of Nancy's that once she'd call them and say, "Hey, I haven't talked to you in two years. How are things going? I have cancer." "Oh, I'm sorry to hear that." And then it was "click" and they never called back again! And she had lost a few friends from that, whether they had gotten scared or whatnot. And now, she had told me that somebody who just called up and says, "Hi, how are you doing?" and then just let me talk, you know? Or just I was just thinking about you. I don't want to take up your time." Just a little note just to drop by, that really did her a lot of good.

ANDREW:
Do you as a caregiver play a role in trying to foster those positive relationships with friends and giving guidance to them on kind of what helps Nancy?

TIM:
Oh, sure, I had some people asking me, "I was afraid to call. I didn't want to say anything. I didn't want to send flowers, nothing like that." And I said, "Well, you know, don't be afraid. She may look a little under the weather but she still has her great personality and she's still as friendly as she ever was. She just looks a little differently now, but you know, she still has her voice, she still has her mind, and she can do anything anyone else can do. It just takes her a little while to get off the couch now, that's all."

ANDREW:
And do you take your cues from Nancy on what she wants to talk about and when? Or even who she wants to talk to?

TIM:
Sometimes yes. Depending on the situation; sometimes yes. I have learned to sort of feel out or sort of get a look, you know? You sort of get those eyes coming at you, like "I don't want to go there. I don't want to talk to that person." Or, you know, "Let's skirt that issue." So yeah, I sort of do. I don't know if it's to protect her or to protect me. I'm not really sure why I do it, I just. It seems like not going there at a particular time can sort of be an easier road to travel.

ANDREW:
As a caregiver do you become sort of the conduit for communications with so many others?

TIM:
Oh, yeah! Oh, absolutely. I tell them, you know, "Talk to Nancy." Some of my close friends that Nancy didn't get a really good chance to know before she had cancer, you know, I would see them on the street or at the store, and then they would ask me, and I would just give them a little rundown on what's cooking. But as far as, like, her family, her parents, or even some of her friends, when they had called, she would either tell me before I went for the phone, "Look, I don't want to talk to anybody." Or "I'm here." You know, I'm sure everyone has those days where it's like, "Look, I'm just not here to answer the phone." And if she didn't feel up to it I would just tell them, you know, "She's not feeling to well, call back tomorrow."

Mary Ann, South Carolina
Tim, Pennsylvania

ANDREW:
Anyone else have a story with kind of a take home point about this? A specific situation, either good or bad, that you think has helped in the area of what to say or what not to say.

MARY ANN:
We had a very close-knit, closely-knit social circle when we lived in another place before we came here. And it was a holiday season and we were invited to a party, and Jack was very reticent about going because he hadn't seen a lot of these people in a couple of months. And they hadn't really seen him since he had, you know, "come out" kind of.

And so anyway, we went to this party and he said he felt like they were being very gentle and kind and caring, but he still was being viewed as being different than he had been when they had seen him the last time. And he said, "You know, it's really a tough thing." Because it wasn't necessarily what they said, it was just kind of they were tiptoeing around him. And he just wanted them to treat him normally. He felt a little bit of strain at that particular situation.

ANDREW:
Have you encouraged people since then to just talk to Jack, and talk to him normally?

MARY ANN:
Well, he's very open about it now. This was when his hair was gone, it was just, oh, right at the end of the chemotherapy. And he had lost a fair amount of weight and he really didn't look very good. So we kind of dragged him out and insisted that he be involved with our friends who were, you know, terribly supportive! I'm sure that they had no idea that he was being looked upon differently, and they were doing it.

ANDREW:
Let's give some advice to people who are friends. Who may find out that their close friend has cancer, and they haven't yet talked to them. And maybe haven't talked to them for awhile, or as Mary Ann was saying, people who saw Jack at a party and some hadn't seen him for awhile, or since he'd been, you know, blasted with these various treatments.

What would you do or say if that happened to a friend of yours? How would you approach it? Tim, you're in the medical world, do you want to try?

TIM:
Every day I'd have to come into work, and every single day it would be somebody new saying, "Hey, how's Nancy?" "Hey, how's Nancy?" You know, "I didn't want to call." "I didn't want to call. I just didn't know what to say." And I told them, you know, being a friend, working with a girl every day, you get to talk about everyday stuff in work. I said, "You know, pick up the phone and just talk about every day stuff." I said, "If you're afraid, for whatever reason that you're afraid, you know, try to get over that hump. Try to just call up and just be a friend, you know? People just need a friend sometimes, and some people just really have to do it. You just have to do it

ANDREW:
Let's say if you, now, heard of a friend who had cancer and you hadn't spoken to them in awhile, Mary Ann, what would you do now, having been through it with Jack?

MARY ANN:
I wouldn't avoid them. I would confront them. I would probably visit them, ask if I could come on over, give them a hug. I would say, "Hey, we're here for you. If there's anything you want, don't hesitate to ask. If you want to talk we're here. Let's go out to lunch." And just really assure them that you know, reassure them and let them know that you are there for them and you will do anything for them that they need. And let them know you're praying for them.

ANDREW:
Now, Kay, how in your situation, where you dealt with three family members, how have people helped you through some really tough times? What were things they said to you, Kay, that were helpful? And if you'd care to share some things that maybe were not so helpful.

KAY:
I think the most, the best thing that happened to me was when people would come, give me a hug and just say, "We're here for you. Whatever you need. Whatever we can do for you. We're here." And I don't know and to be able to have someone that will listen. Somebody that you can talk to. Somebody that will just sit there and listen and say, "Yeah, I don't understand but I'm willing to hear what you've got to say."

Mary Ann, South Carolina
Tim, Pennsylvania

ANDREW:
Say, Mary Ann, what thoughts do you have on being a good caregiver?

MARY ANN:
I think that in order to be a good caregiver you have to take care of yourself, because you have to be strong, and emotionally if you're not upbeat, and with it, and capable of just rising to the occasion, then you're really a drag on the person who's ill. And so I think that you need to be shored-up in terms of getting enough sleep; in terms of eating properly; in terms of surrounding yourself with people who are good and positive for you.

And you know, obviously if Jack had a poor day, I wasn't having a good day either, because I wanted to maintain a positive and forward kind of position in this healing process.

ANDREW:
And it's okay for you to ask for help, too.

MARY ANN:
Oh, absolutely! Here, you know, I had friends who were there for me, and they definitely would have risen to the occasion. I think it's very one of the most difficult things for us was to learn to receive. It's really easy to give. But that was the turning point, I think, and we'd been married almost thirty-four, thirty-five years at the time, when we had to learn to receive. And that was a very humbling experience. It was a very positive experience in our lives, I think. That was a real growth experience.

ANDREW:
Tim how about for you? Young guy, new marriage. Do you encourage people, you know, being a support to you as a caregiver?

TIM:
You know, actually I felt myself pushing that away. I felt like when everything was hot and heavy going through the chemo, and the wedding plans, and finals at school, and all the other kind of stuff that I still had to continue to do. Plus work, because Nancy had stopped work. It was like a 24-hour, seven-day-a-week marathon that I was running, with Nancy being the focus about 90 percent of the time.

And people would come up to me and say, "Oh, how are you doing?" "I'm just fine, I'm just fine." I sort of like pushed people away, and I didn't really allow myself to get in conversations about how I was personally doing, because I was more concerned about how Nancy was doing.

And looking back on that it was probably wrong for me to do that, because I thought I could have used some help every now and then, you know. I'd get a little short tempered, but I would never do it in front of Nancy, I'd keep it to myself and then when I'm on my way driving into work, I would like yell for no reason at all, just to get the anger out.

Tim, Pennsylvania

ANDREW:
Tim, I also think you have a story about how being open about Nancy's cancer helped a very young member of your family.

TIM
When Nancy was going through her chemo and she had lost all of her hair, and she was wearing bandanas around her head, I'd take her out every now and then. We'd take little walks around the condo and stuff like that. But then we would visit my brother and he has a five-year-old son. And he's seen Nancy a couple of times and you know, "Hey, what's the matter with Nancy? Is she getting sick? Is she getting sick?" And they really didn't want to tell him, you know?

So finally, Nancy comes over and he goes, "Hey! What's that on your head? Where is all your hair?" So she pulled off the bandana and she is bald as a cucumber. And Michael walked right up to her and started, you know, touching her head. And my brother and his wife were like, "Mike, what do you know, don't mess with Aunt Nancy, she's not feeling too well." And she goes, "Wait a minute, you know I may be sick, but I'm still a human being. I still have feelings." And to be able to make a kid laugh for a second or whatever, may be helpful for her. But then Michael turns around and says, "You know, there's a bully at my school", first grade, mind you, "who is bald as well. He also has that cancer." And my brother's like, "Wow!" You know, my brother didn't know that. And so Nancy started to talk to Mike about it.

And then Michael would actually call up Nancy on the phone, obviously with some help and say, "Hey, you know, I talked to my friend at school and he was feeling sick, too." And it really helped Michael deal with it, because now Michael's the boy's, like, best friend, whereas before he was a little afraid, you know, like looking at him like, you know, "Gee, what's wrong with that guy?" But then to see somebody in his own family going through the same thing really, like, helped out Michael a lot, which in turn helped out Nancy a lot. You know, we actually met the boy and met his family and stuff like that.

So, for even like small children to shelter them from cancer or from an illness could be a bad thing to do, when children are very perceptive and they get to pick up on a lot of things that could be helpful for them for their future

ANDREW:
Very good point. I think really, I guess, what it comes down to what everybody's been saying is, it sounds like facing up to it, talking frankly, openly with people, friends and family, taking your cues from the person, the loved one who is dealing with cancer. But that openness is, above all, very important.