My name is Esther, and I'm a breast cancer survivor. In the next few minutes, you'll hear eight long-term survivors share their experiences about seeking, maintaining and nurturing relationships. The discussions you are about to hear focuses on these key points: open communications between spouses and family members, dealing with a lack of sensitivity in the workplace, and how support groups help cancer patients.

Andrew Schorr, a medical broadcaster who was diagnosed two-and-a-half years ago with leukemia, will be the host and discussion leader. Patty and Keith from Minnesota have been married for forty-three years. During that time, Keith has had three occurrences of cancer; colon cancer, a recurrence of colon cancer, and then prostate cancer. Bill from Maine, a practicing psychotherapist, was diagnosed with Hodgkin's lymphoma thirty years ago. Jack and his wife, Mary Anne, from South Carolina, join us. Jack had non Hodgkin's lymphoma. He underwent chemotherapy, surgery, and radiation treatments. Nick and Diane from Connecticut have been married for more than thrity years. He was diagnosed with non-Hodgkin's lymphoma. He had radiation and chemo treatments. In 1992, he had a bone marrow transplant. Dennis, from New York, was diagnosed with prostate cancer more than six years ago, was treated with surgery and has since started a support group for men. And Fern, from Oregon, was diagnosed with breast cancer about six years ago at which time she had a mastectomy.

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, nor the opinions 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 their cancer in many unique ways. You will determine what is appropriate and relevant for you. We hope the information is helpful and welcome your feedback.

Keith and Patty, Minnesota.

ANDREW:
Let's go first to Keith and Patty in Minnesota. When you talk about maintaining and nurturing relationships from your point of view as a cancer survivor, what does that bring up for you?

KEITH:
I think open communications has been the way we've approached the whole subject, going back to even 1969, within our family and within our marriage. We've never sheltered or held back anything from the kids, when they were even the youngest age, to the present journey that we're on.

ANDREW:
Patty, from a spouse's point of view, when someone is diagnosed with such a serious disease as Keith, and he's had three bouts of it, if you will, what do you do on your end to preserve a long and healthy marriage?

PATTY:
Of course the first time he was diagnosed he was so young. He was only thirty-four years old and we had four young children. What I tried to do was be as supportive as I could to him, and try and keep a positive attitude with our children. We did share it with them because we felt they needed to understand their father's illness and how serious it was.

ANDREW:
What do you, as a wife, what are certain specific kinds of things you've done that you think have been helpful to Keith and nurturing of your ongoing bond in your marriage?

PATTY:
If I sensed that something was bothering him, we'd talk about it. I think probably the most invasive thing for him was when he had the prostate cancer and had to have radical surgery. There were some questions as to whether he should go with a radical surgery or something a little less radical. And I just looked at him and said, "You're more important to me alive. I think because of your history we need to go for the radical." I felt like he needed more support with that particular surgery than he did during the colon surgery, because it just seemed like it was much more invasive to him as a person.

Bill, Maine

ANDREW:
Bill in Maine, you're a psychotherapist, and I understand that you feel you made some mistakes around trying to protect your wife from all the "bad stuff" around cancer.

BILL:
As part of the response to the whole thing, I really became pretty isolated and withdrew. My motive was to protect her from the pain of it all, but how irrational that really is. She became very upset with that, and wanted more to participate in the process, and it didn't help us very much. I'd only been married three months when I got sick, and my wife was pregnant. So there was a tremendous amount of stress immediately upon a relationship that hadn't hardly had a chance to grow and get started. But we were together for twenty years and we have three great kids.

ANDREW:
What do you think are some things that can help keep relationships strong or growing, and then things you'd caution against that can be destructive?

BILL:
If you don't talk. Obviously Keith and Patty really have done a good job at trying to make that happen. Sometimes it's a lot harder for people who don't know each other very well to really be honest and really be open about speaking their minds. And I think there's a tendency in some people to go into kind of a conspiracy of silence and not talk about it. If we don't talk about it, it will go away, it won't be real, we can deny it.

The best support I think can happen when people are telling you the truth, not just being nice to you. And I think that really is a critical factor.

ANDREW:
What if you had to do it over again and you were newly married with a young child. What would you be saying as you faced your cancer and wanted to have a strong relationship with a loved one?

BILL:
Clearly, to be able to speak honestly and sincerely. And one thing that Keith said I think was really important. I believe he's absolutely right that it's harder for the caregivers than it is the survivor while the action is going on. Something is happening to the person who is experiencing the cancer. There are treatments occurring. There's visits to the doctor that have direct and personal activity and action on that patient. But the caregivers are watching all this happen, and I think that's really hard. And I would pay a great deal more attention to that in a new situation. I would hope that I would be more sensitive to the experience that the caregiver is having.

Jack and Mary Ann, South Carolina

ANDREW:
It's not just family relationships cancer survivors have to deal with, but relationships at work. Mary Ann and Jack in South Carolina, I understand there was an uncomfortable work situation that Jack faced.

JACK:
I had been working in the Washington, D.C. area, pretty stress related intensive work area. It was nothing unusual to work a 70-80 hour week. As we look back on it now, Mary Ann and I would both agree that I was probably wearing out and was probably getting depressed before this even happened. And in fact, maybe the stress and the depression potentiated the onslaught of the cancer.

Consequently, when I got sick, these same people with whom I worked, a number of them were not very sensitive to the fact that I might really be sick. So when I was, in fact, in the hospital or at home on chemotherapy or back in the hospital, which was a frequent path between the hospital and our home, my boss said, "How come he can't come to work today? Is he really that sick?"

And as I began to ponder how to respond to the "un-niceties" of the workplace, the negative aspect of things, I knew that I would not get anywhere by brooding about it. And for me this was a complete turn around. I knew that I had to forgive anything rather than harbor it and feel vengeful or angry. I don't believe you can heal properly with a lot of anger inside you. It's part of the cleansing process that we do mentally and spiritually to enable ourselves to take advantage of the medical healing. Consequently, I could sit there and say, all right it's fine, it's not hurting me, it doesn't matter, all that matters is that I take care of business. And for me, taking care of business was doing what I needed to do spiritually and medically. My wife, my daughters, I had the best support system you could imagine.

ANDREW:
Mary Ann, I know it was a rough go at work for Jack. But, what about your family friends?

MARY ANN:
Our friends were incredibly supportive. They would not leave Jack alone. They would not leave me alone. A person came by to visit Jack and me and said, "Now you know who your friends are." And my response had to be "We never knew we had so many." It was remarkable.

During the week between Christmas and New Year's we had three sets of visitors who came to our home who were from very different backgrounds but had been old family friends. And as they came just by surprise to us, and it was the most incredible Christmas gift I think we had ever received, because it was just very touching that they would have remembered us in such a special way.

ANDREW:
Mary Ann, it sounds like you have a wonderful supportive community, but were there some relationships that as Jack went through this and you and your family were tested by all this, where they just couldn't continue? They just broke apart.

MARY ANN:
The only relationship that I recall was the one that he mentioned, and obviously it never was a relationship.

ANDREW:
At work.

MARY ANN:
At work. Now, there were people at work who were supportive and very kind and very loving and very wonderful. Discussing that is kind of difficult for us, I have to say, because it was painful. And I'm just grateful that Jack was able to be as forgiving as he has been, because my daughters and I are deeply hurt by it even now, but we can forgive.

ANDREW:
It does sound like an uncomfortable situation, Mary Ann. We will come back to you in a few minutes.

Nick, Connecticut

ANDREW:
I have with me now Nick and Diane from Connecticut. Nick, in 1992 you had a bone marrow transplant. How did Diane help in your healing process?

NICK:
I had a phone in the room while I was in isolation after the bone marrow transplant, for the month, and everybody would call. But I was just in no mood physically or emotionally, to handle it. And everybody wanted to know, "Well, how are you doing today? How are your counts? Are they going up? Is your immune system coming back? What are you dealing with?" And I was very sick, and so Diane really stepped in and took the key role even when my father, my sister, cousins, brother-in-laws, parents called. It was just something that I could not deal with, and she would relay the message as to how I was doing, the progress, the problems, and all that. And that was really instrumental in me getting better, to have discussed with everybody who called, every day, how I was doing. I just couldn't do it.

ANDREW:
She was sort of your news reporter.

NICK:
Absolutely! I needed that to help intervene so that I could relax, be comfortable.

ANDREW:
How do you work on the relationship with this woman who was sort of your lifeboat during that bone marrow transplant time?

NICK:
I think the key issue in long-term relationships, and we've been married thirty-one years now, is openness and honesty with your soul mate. And I really think that's something that improved when I developed cancer. I belong to a support group, a hospital support group in Connecticut, and the honesty, the relationship, being open, and I really think helps people grow and understand each other better.

Nick and Diane, Connecticut

ANDREW:
Diane, what specific strategies can you suggest to help keep a relationship strong that is being tested by a serious illness?

DIANE:
While he was going through treatment I really pretty much let him take the lead and I would follow. And I said, "While you're going through the treatment, you only have one responsibility and that's getting better. And if it means taking a year out of our lives, well then that's what it will do, and you do whatever is necessary, and I will do whatever is necessary for it to continue." And I think that really is what made a difference. Because then he didn't feel guilty in doing whatever he needed to do.

ANDREW:
Nick, what did you do to try to rebuild your relationship with Diane as you recovered from the cancer treatment?

NICK:
Once I went through the bone marrow transplant, recuperated for the six month period. We tried to bring normalcy back to our lives. I went back to work. We took vacations. We went away together. We have two children, and they were a key part of our lives. We tried to bring things back into our lives that we enjoyed doing before. And, to look to do new things together.

ANDREW:
Do you think you "smell the roses" a little more now that the special moments that could have otherwise maybe passed you by, with a busy family schedule before cancer? Are things you sort of stop and drink in more now?

NICK:
There were periods of time in my life prior to cancer, when I was raising a family, that I didn't know what was going on in that stage of my life, if you will. I can't remember the highlights of things that I did. But I can remember looking at sunsets, looking at the moon coming up. I'm a sailor, so we sailed Long Island Sound. And going to various islands and places, and being on the water together. And seeing that is just such a wonderful, wonderful feeling! And there's no doubt that it has sensitized my life to enjoy little things like that children and people and life and sailing and things that we kind of take for granted. I always thought that I was immortal until I had cancer. My grandmother lived to ninety-eight years old and I never considered life at all. But now I've discovered my mortality, which is good. It's kind of scary, though, to know that I have a finite life in front of me.

And actually, between the remission and going back for the bone marrow transplant, I was hit by a car crossing the street! I was in remission. I went into remission in April. In June, I was hit by a car, crossing the street. Had I been one step back, I wouldn't be here today!

So the joy of living every moment, it's not only if you have cancer, but just being an individual and going through life, you struggle, but you have to enjoy each day because you don't know that you may not be here!

ANDREW:
How did you put yourself back together so that you could resume your relationships in your life and a new kind of relationship, post-treatment, with Nick?

DIANE:
As he was getting better, we actually did more together, and we found out that our priorities were not necessarily careers, financial rewards. They were more just being together and being with the family. And so those other items took a second place. And so, actually, there were some rewards from all of this.

ANDREW:
Thanks, Diane and Nick. I'm glad to hear that you are doing so well.

Dennis, New York
Fern, Oregon

ANDREW:
Dennis, in New York, you were diagnosed six years ago with prostate cancer. Sexuality may become an issue for some cancer survivors. Dennis, being a prostate cancer survivor, how did you and your wife handle any changes in the physical part of your relationship?

DENNIS:
Well, somebody else in the group spoke about how they just wanted them to be alive, they didn't care about the other part of it. That was basically the same decision that we made. But I have always felt that I didn't have to prove myself in the bedroom to be a man. There are other ways to prove that you're a man. You can just hold and caress and assure each other, and you know, the sex act doesn't even have to come into it. So, that really wasn't a problem, the sexuality part of it.

ANDREW:
Now, I want to get a woman's point of view on how cancer can affect sexuality. Fern, with breast cancer and a mastectomy, how did this affect your self-esteem as a woman and your idea of what a sexual relationship with your husband would be like?

FERN:
You know, it's interesting. It's an evolutionary kind of affection. I mean, it's changed over the last six years, and I'll talk about several different phases of it.

The thought of losing my breast seemed at first like it was going to be body image devastating. But I was so terrified I was going to die, I don't think it mattered to me that my breast was going to be removed. And I hadn't even thought through, what would sex be like? And I think for a married woman it's very different than for a single woman, so I can only speak to the perspective of being married and being also in a really solid relationship. I know a lot of women in my support groups that I have attended who when they lost their breasts they lost their husband. And my comment to that is, goodbye to bad rubbish!

My husband did something very special, and if he knew I was saying this on a tape he would just cringe!

The doctor had said you know, I had been in the hospital a couple of days, and he said, "Go home, don't even bother to shower here. Just get out of the hospital, enjoy yourself, go home, take a shower, wash your hair, whatever." So we went home, and I couldn't move my arm, and I went upstairs to take a shower and my husband went and he was very nervous, we didn't know how to even look or say anything to each other. His whole goal right at the moment was like, let's just get her in the shower, maybe I won't have to talk to her!

So he got me a towel and he had this shower running and he's like, "Come on, let me help you get into the shower." And as he started to take off my robe, he said to me, "You know, I love you so much and I'm so glad you're not dying!" And we ended up making love on the floor in the shower, and the only threat to my life was maybe drowning!"

So from that point of view I appreciated so much the fact that we'd covered that territory without much worry on my part. But it didn't take it all away, because then as time went on, that first year particularly, when we would make love, I felt as if I was offering him a body that was less than what he deserved. And it still really caused me a lot of sadness. I think it is the way I would describe it.

And my oncologist, also, was a really sweet man. And he said something to me once when I was talking about the other physiological changes that I've gone through because of chemo, is it put me right into menopause, which in terms of sexuality changes your libido, it changes the lubrication of your vaginal areas, I mean it's very unusual. And I remember my oncologist saying to me once, "You know, Fern, sensuality and orgasm happens in your head and in your heart, not in your breast and in your crotch." And that was very well-taken advice.

ANDREW:
Those are strong words from your oncologist, but wise ones.

Bill, Maine

ANDREW:
I'd like to go back to Bill now. Bill, as a psychotherapist, what can you offer that will help sum up what everyone has been saying here?

BILL:
I've been impressed by the fact that it's really very clear that cancer is a family disease; it happens to everybody in the family. Each person has a response in one way or another. And if those issues are dealt with openly and honestly and directly, then there's a very real chance that the family can overcome the impact of such an illness. What seems to happen is that the emotional dynamic contract between the survivor and the rest of the family members gets broken by the diagnosis. And following the treatment process, then this needs to be reestablished and reworked.

ANDREW:
As far as telling children if Mom or Dad has cancer, some families do and some families don't.

BILL:
Well, first of all the children know that something is wrong without your telling them about it. I mean, they can sense it. So to not say anything to them would be a tragic mistake, I think.

What needs to happen is demystifying it, and giving kids information that's factual that at the same time doesn't frighten them to death, but tells them the truth. Because they already know something is wrong and they need to know what that is so they can cope with it, and understand that you as their parent are fully aware and capable of handling fear.

ANDREW:
There will undoubtedly be people diagnosed with cancer who will listen to our conversation who are younger, single perhaps. What would you say to them as far as things they can do, whether they are adolescents or young adults?

BILL:
Well, adolescents have a particular problem because they're dealing with their own identity issues to begin with, you know, and becoming adult. So that when they're faced with cancer they have a way of dealing with it that's unique. It may result in a lot of, sometimes, acting out. Kids really get angry and they get frustrated and they won't take their chemotherapy or they resist. I've had that happen, where the kids just refuse to participate in the process and want to deny it's even going on. And that can be life threatening in some cases where people really are quite sick and they refuse treatment.

ANDREW:
What can the parents do?

BILL:
I think it's to circle the wagons around this child and allow them to, within the limits that are acceptable, to express themselves as much as they possibly can. To act as a sounding board, act as a protector, to allow affect and not be afraid of it. And at the same time it's real difficult because you have to deal with your own grief at the same time, your own fear that your child is sick and what's going to happen. And yet you have someone who can really be very verbal and very difficult to manage.

ANDREW:
Patty and Keith, I understand you have a story about how one of your friends dealt with cancer.

PATTY:
We have some friends who have a daughter who was diagnosed with cancer. She's fourteen. And one of the things her parents did is they gathered her friends and their parents and they told them that the daughter was diagnosed with cancer, what it was, the treatment she was going to have to go through. And they asked for their help in giving support to that daughter. And that somehow put the girl's friends at ease, and they became such a strong support system, which was the best thing for that child.

BILL:
I think that's really important, because a lot of times friends don't know how to deal with the person who is sick, and the person who is sick or the family has to give some lead and some way of letting people know how to respond. And once that happens then people can begin to feel much more comfortable.

Dennis, New York
Jack, South Carolina

ANDREW:
Let's go back to Dennis for a second. Dennis, you're a big proponent of open communication. Do you just talk freely, let everybody know that you've had prostate cancer?

DENNIS:
Yeah. Just in the course of a conversation, or you know, being involved with a support group really has turned things around for me as far as being able to cope with everything. And I learned to just express myself to anybody who would listen to me, and that makes it a lot easier. And like the people will say, you'd be surprised who the other people who are carrying a burden sometimes worse than you and you make each other feel good when you start talking about it.

ANDREW:
And Jack and Mary Ann in South Carolina, do you openly talk about it now?

JACK:
Yes, we do. Initially, perhaps it's the male in our society, as a product of our culture, I thought support groups were something that a guy like me would never need. And yet as I found myself going through the illness, I began to realize that gee, I do have a support group. It's the people in the church, the neighbors, the friends and our family and so-forth. Not defined as a "support group" quote, unquote, but in fact a support group. I would encourage people not to sell short the value of a support group.

Don't be afraid to accept any and all help. When I got the news about cancer, I was floored! Fortunately, my wife and our doctor found a good therapist and we went into psychiatric help, and perhaps that as much as any of the other things helped to pull me through. And as I see more and more cancer patients, we work a very wide support group area here in our state, and we see people all the time who don't get that help who need that help. Our psychiatrist who speaks to our support group said, "You know, the mind is just like any other part of the body, it can get sick too and it needs help. Don't be afraid to seek help! That's very, very important."