Losing Your Mother To Cancer

Suhaila	Diane	Delores

Welcome and Introduction of Guests

Dr. Harpham:

Hello and welcome to the American Cancer Society's Cancer Survivors Network. I'm Dr. Wendy Harpham, your host. Today I will be talking with three women who have lost their mothers to cancer. As a doctor of Internal Medicine, author on survivorship, and also a long-term cancer survivor myself, I am pleased to be your host for today's conversation as we talk about; meeting the challenge of being the sole caregiver for someone with cancer; the ways that parents with end-stage cancer communicate with their children; dealing with grief after the loss of your parent; how being the caregiver for someone who dies of cancer affects the way you handle your own cancer diagnosis; learning to make your own health a priority while recovering from cancer; taking care of yourself when you have a family history of cancer; educating and helping others who experience the death of a parent from cancer.

First, I'd like to introduce Suhaila. Suhaila's mother was about 68 years old when, on Christmas Eve, she was taken to the emergency room with lung symptoms. Evaluation revealed that she had cancer in both the lung and the liver. She had chemotherapy for about three months, but it wasn't helping the cancer, and about a month and a half to two months later, Suhaila's mother died. Suhaila is now 29 years old, single, and lives in California. Welcome Suhaila, and thanks for being part of our group today.

Thank you very much.

Our second guest is Diane from Pennsylvania. When Diane was 13, her mother died of breast cancer. Diane is now 49 and was diagnosed with breast cancer herself in February of 2001 after a routine mammography revealed a suspicious area and a biopsy was done. Diane had a mastectomy followed by chemotherapy and then six weeks of radiation therapy. Diane is married and has children, one a 13 year-old daughter who lives at home. Hi, Diane. Thanks for being part of our show.

Hello. Thank you.

And our third guest is Delores. Delores is 55 and lost her mother to ovarian cancer. Delores is a survivor of breast cancer herself. Delores' own cancer was diagnosed in 1989 when she discovered a lump during a self-breast exam while taking a shower. Her first doctor said it wasn't anything to worry about and she should come back in six months. But Delores insisted on a mammogram and then saw a surgeon who recommended surgery. Because of the extent of the cancer at the time of diagnosis; she had a mastectomy, chemotherapy for six months, and then radiation therapy for seven weeks. She felt so scared and depressed when she looked at herself with just one breast that she covered up all of her mirrors. A doctor told her that she was a good candidate for reconstructive surgery, which she had done in 1990. Delores is single, has authored books about her experience, and is active in Reach to Recovery, Hospice and Relay for Life. Delores, thanks for joining the show.

Thank you very much.

Reversal of Traditional Roles Between Mother and Daughter

Well, all of you have such compelling stories. I'm really glad that we're going to have this opportunity to talk today through the Cancer Survivors Network. The focus of today's show is dealing with the loss of a mother to cancer. So, let's open up our discussion, by talking about what it was like to care for your mother during her illness. Suhaila, you were 27 when your mother was diagnosed with breast cancer. Can you share with us what it was like to care for her before she died?

It was very hard. I had no help and she didn't want help from other people. And it was really--it was really hard on me to watch her day by day just slowly slip away.

You know, we think of the role of mothers as being the ones--the mother takes care of the daughter; and helps the daughter grow up and take care of things.

Yes.

Tell us what happened to the roles when your mom was sick and then when she was dying.

It just turned around. I suddenly was doing things for her that she had done for me when I was a baby and always; showers-everything and trying to get her to eat. Three days before she died, we had a conversation, and I just looked at her and I said, "Do you know who I am?" Because I wasn't sure she was understanding anything and she looked at me and she said, "You're my mother." That broke my heart. And then I said, "Well, who are you?" And she said, "I'm your daughter." I waited a few minutes and I asked her again, and she said the same thing. She just kind of snapped out of it when I asked her a third time. She was really upset with me but it still kind of haunts me a little bit.

What did you think that was about?

I didn't know whether she was--because I thought maybe her cancer had spread to her brain.

So you thought she might be confused?

That's why I asked her. But she hadn't been--Someone just said maybe I should ask her questions, but she just seemed so focused. She has always been one to say what she thinks. After she said it, she just bounced back. I think she really thought because I was making her do all the things that she didn't want to do. She didn't want to get up. She didn't want to eat. She didn't want to--everything she didn't want to do, I was trying to make her do.

So, how did you feel, about basically forcing her to do things that she wasn't very willing to do?

I felt bad. I still feel bad. I have my good days and my bad days, but I know it was only for her good. It's a strange situation to be in.

Who was helping you at the time? Meaning, knowing what to do and-

Other than her doctors and her nurses, nobody. At first everybody offered to help. Then there was just nobody. Nobody wanted to see her with no hair. They really didn't like being around her. Then after chemo, she just basically slept all the time. So there was just--around the middle of July, she didn't even want me to leave the house. She just wanted me to stay with her. And I don't know if she realized, because we never had a conversation past probably July, early July. We used to talk all the time. I just wanted to have one more conversation with her.

How did you feel about being left with the total responsibility for her care?

I was mad. I was mad at everyone. I have two brothers. One is in the south but when he was here, he was with my other brother. Neither one of them liked to be around her. They would see her, but just for very short periods of time. Five minutes.

Suhaila, if you were to go back, would you do anything differently?

Probably not really. Because I have those times that we had together. At first when she still had--she wasn't really sick-sick yet, we would laugh and talk and talk about things. But I wouldn't probably because I had those final times with her.

So, they were worth the hard times for you?

They were, but I still miss her.

Diane, you were only 13 when your mom died of breast cancer.

Right.

Can you tell us how you, as a teen, helped care for your mother?

Well, my father was an alcoholic, so there was no help there. I had a sister who was 9. So I basically had to step in, to be the mother of her. I mean, the family situation wasn't good. On my father's side, she didn't really have support on that end. And her family was remotely located. So I kind of basically was in that position of, at 13 trying to keep the household going.

How did you know what to do?

[laughs] I often look back on it now, especially now that I have a daughter that age, and wonder how I knew what to do. [laughs] I don't know! People ask me now, "How did you do it?" I don't know. At the time, I just DID do it. However, she did have so much strength. I look to that strength now, with having cancer myself.

Did she kind of walk you through how to take care of her?

Yes. Yes, I must say that. There was one day when she was still able to. She cleaned houses, and she was still able to do that. She only went through radiation. This was forty years ago, so I didn't hear much about chemotherapy. I didn't know a whole lot about her actual cancer whether even chemo was an option at the time.

Yeah. Diane, do you remember how you felt though? About being responsible for a sick mom, a dying mom, and the house and your younger sister?

Oh, sometimes it made me real upset. Because I thought I should be able to be going out doing regular things that 13-year-olds did. For the most part I did do a lot of that. But there were times when I couldn't. I remember one day, her coming home. She knew what was happening, and I guess I didn't know the full scope of what was going on.

Dealing With The End of Life Journey

When did you know she was dying?

Well, actually that was one of the really hard parts for me because I thought she had the flu the last time she went to the hospital. I really did not realize at the time she was actually dying of cancer. To me at 13, I didn't really have an idea what cancer was. And you know, forty years ago, I just didn't have-so it was quite a shock when my mother went into the hospital. A week later, she tried to tell me that that was the last time. She knew that that was the last time she was going in. And she tried to tell me, said she was proud of me and she knew that I was going to be taking care of my sister. But I didn't want to hear that, of course. So, you know, looking back on it, a lot of times I wish that I would have realized that it was the last but I didn't at that time.

But you were only 13.

Right.

Delores, can you share with us what it was like to care for your mom at the end of her life? I mean, you had a 5, a 2 and a 1-year-old child while caring for your sick mom.

Yes. What made me sad was seeing my mother going through the changes that she was going through, when she didn't believe in going to the doctor. We were telling her; maybe she should go because she was having problems. When she did go to the doctors, they found that she was full of fluid. The only way they could find out what was wrong with her--they did exploratory surgery on her and found that her cancer had spread all over her body.

So, she waited a long time before she went to the doctor?

Yeah.

And then the exploratory surgery showed that it was widespread?

Yes. And they sewed her back up and said there was nothing that she could do. She lived 14 months to the day.

Can you tell us what it was like to care for your mom while caring for your three young children?

For me, caring for my mom, it was a joy. Because she cared for me as a child; with a child who had disabilities. There were ten others, and everyone said they had to work. I was the only one who was not working. So my mom was able to be up and around up until the last three months before she passed. So I didn't have to totally take care of her until the last three months, when she was in the bed.

And it sounds like when you did care for her, you felt joy in the task because you were almost paying her back for the good care she gave you when you were young?

Yes, because when they came out; were putting her IV's in, they showed me how to take it out, or what needed to be done. I did that. And the saddest day, it was the day that she passed. When it was time for her to go to the hospital to have those fluids drawn, she could not sit up. She would have to go in the ambulance and I would go with her to have that done. And the day that she passed, I had her moved to my home because it was hard on me, taking care of her and the children. And she had told me, "No, tomorrow." And my knowing and understanding now, that she knew there was not going to be a tomorrow. I got her to my home about 12:00 that particular day. At 4:00, she passed away.

So she died in your home?

Yes.

You know, one of the ways we get through tough times is by communicating with each other. Suhaila, how did you communicate with your mom about what was happening at the end of her life?

At first it was really easy. We talked. I was told that very night, Christmas Eve, that she did have the cancer and she probably had no longer than a year. But I should not tell anyone, so I didn't. And somehow she found out before her biopsies came back. When they did the liver biopsy I asked her. We were staying in a hotel that night to be close to the hospital. I said, "If it comes back [positive], are we going to tell everyone?" And so everything was kind of a "we" situation, not "I". I took her to all of her blood tests, her doctors' appointments, her chemo--at first we would talk about anything, and everything.

So she talked about her feelings and her fears?

That was the only thing we didn't talk about. She wouldn't. She just said that she was going to beat it and that was it. There was no discussion. She was going to do the chemo. She would be better. Then she wouldn't talk about anything. She talked to some people. She told my nephew a week before she died. He lived further away, and he was going home, and he went in to say goodbye. And she said, "I need you to sit down. I need you to know I'm going to die." And she was telling him that I didn't understand. My other nephew was on leave from the Navy, and she told him goodbye. And she told my niece goodbye. I just never understood why she never told me goodbye. I was with her when she died. I was holding her hand. And we just--she didn't want to be bothered. I guess because the cancer was so far gone. So all she did was sleep and she just stopped eating. She just couldn't talk.

Now, Suhaila, communication is two ways. It sounds like she shared a lot with you. She talked about "we". But she didn't talk about many of her feelings or fears or her knowledge that she was in fact dying.

Yeah.

What about your communications with her about your feelings, your fears, your concerns?

I didn't. I probably should have brought it up, but I just, I kept everything inside of me. Because everybody, from the moment I found out, told me just be there for her. Don't let her see you cry. Don't. Everything was a "don't". And I didn't. I had never been around anybody with cancer. I have never taken care of anyone who was dying. I didn't know what to do.

Getting Help and Advice: During And After The Experience

Who did you look to for advice or information?

My niece's husband took care of his two parents when they were dying, but he just--everyone just kind of bailed out on me. He said, "If you need anything, if you need to talk to anyone, call me."

Suhaila, what about the health care team? Your mom's doctors, your mom's nurses, the hospital social worker?

The hospital social worker was not involved. The doctor was. I live in a small town and everybody knows everybody, and he's a really good man. She had a home health nurse who was very, very, very good with her. Beyond that, there was nobody.

Did you talk to the home health nurse about your communication with your mom?

We tried. But with seeing her only once a week and nobody really thought she would go that soon. So they weren't really prepared. You know, none of us were prepared. I didn't know what to ask. I didn't know the questions. All everyone said was "don't". Everything was "don't".

Looking back, what are the things that you wished you'd shared, Suhaila?

She knew I was scared. Before she was ever officially diagnosed, I had a cry one night for four hours. And she came in and she lay with me and she talked with me. She told me how everybody would be here for me. So I think back when she said she would be here. After the chemo and this was in January--she really knew back then that she had no hope because she was in stage IV then. So, she really had no hope. And she told me my brothers would be here for me, and all the different people that would be here for me. She really kind of knew. And we had one discussion. I told her I wanted to talk to her, and she said, "You know, we should talk." But her discussion was, she discussed her funeral. And when she was through she said, "I want to go to the hospital right now." So that's the only discussion she wanted to have.

Do you think she might have been keeping her feelings and fears inside to be strong for you?

I wish I knew. All I know is she just slept and she barely got up. There was not much time in between, stopping the chemo and the time that she died.

Right. It just sounds like everything happened quickly and-

From start to finish it was about eight and a half months, at the longest.

Now, since she has died, have you talked to anyone about what happened when you took care of your mom?

I should have. Just friends. I have four friends who have lost their mothers to cancer and we talk on a regular basis, most of us. My doctor thinks I should, but it's kind of hard. I don't really want to open it up because those wounds aren't really healed yet, and it hurts really bad.

And many times, grief counselors and the grief literature, suggest that talking about your grief and what happened in a safe place, with people who can support you, helps these wounds heal.

Yeah.

There are many places to get help understanding what happened, working through your feelings. Cancer Survivors Network can connect you with other people in similar situations--professionals in grief counseling. Either through the American Cancer Society, through your local hospital, there are organizations devoted to grief and grief recovery that can help you. Any experience like that, when you know about what's happening, and you're supported through working through it, may be able to help you.

Mm-hmm [yes]. I guess that's what I'm looking for. I need to take the step and I don't know which step to take, which direction to go. And as far as my family, we have all pretty much went our separate ways since she left us.

Well, we're going to talk to Diane and Delores, but there are services, information services, support services that are available, and we'll talk about them more as we get into the show.

Oh, okay.

Diane, can you tell us about how you and your mother communicated through her illness and before she died?

My mother was--I guess everybody thinks their mother was phenomenal [laughs], but I really thought that mine was. What I can remember from the time when--see I'm not sure as to exactly when she was diagnosed--I think it was three years before. So I would have been 10 when she was actually diagnosed.

Uh-huh [yes].

But I do know, that she was told that she would have six months to live. And then, she died in four, at the end. All I can remember of those four months was laughter. She dressed up for Halloween, but we never really communicated what was happening. And what I told my daughter was that I would always be honest and talk to her about what was going on with me. Because, as I said before, it was such a shock. I really didn't know my mother was actually dying. I had no idea that that was going to be the end result of all that.

So you wish she had been more open, honest and direct--

Right.

--about what was happening?

But at the same time, I can look back at it, now that it was 36 years ago. You didn't talk to kids like we do now. You know, you didn't really tell.

Right.

I think she tried her best to prepare me. In that, everything that I was going to need to know and do to function, after she was gone. But never sitting down and saying, "This is what happened and I've got this and this could be the result."

Diane, how did you communicate to her, through her illness, about your needs and your feelings and thoughts?

I did have to work through a lot of that because I was 13. Thirteen is a real selfish age [laughs]. So, I was kind of irritated a lot of times that I had to deal with the ups and downs of her going to the hospital or having to be operated on. When I recall her mastectomy, it was gruesome--considering mine, that I was home in a day.

Yeah.

She was in bed at home for a good six weeks with drainage and everything. But to me, it was an irritation that--it stepped on my social life--

Oh yeah!

--and everything else. So then, of course, I had a lot of guilt feelings to think of afterwards because I never realized, "Oh my God, she is actually dying!"

How did you actually work through that guilt?

Well, I would say my high school years and further on, a lot of clergy and support through friends and outside of the family. Who realized that there was a need to kind of step in and talk through that.

So people approached you to help you work through your grief, your loss?

Yes. I had a particular aunt that basically stepped in, to be as a substitute mother. And she helped me through a lot of it also.

Unique Yet Universal: The Feelings After The Death of a Parent

Can you share with us how you felt when your mom first died?

Yeah, it was a physical pain. The nights were horrible. I mean, I actually still--now I've grown to where it's not as often--but when I do get that, it's in your chest. I can't describe it. It's a physical pain. This year, when I was Christmas shopping with my daughter, was the first I felt it for a long time. I was almost glad that I did because I thought, I don't want to lose that intensity of the feelings that I had for her.

So the pang, reminds you that you loved her and that you miss her?

Exactly. And it almost can become a good thing. Maybe that's weird [laughs], but it's like I said. I was Christmas shopping last week and I just thought for a moment, 36 years ago. What a difference the world is. What would she think of it now? What would she think of my children? Then I got that feeling. And I thought, "Well, you know, I still have that intense feeling, so that's good!"

And when you were 13, 14, 15, what helped you when you had that chest pain, when you missed her so deeply?

I think she did. [laughs] That's the only answer that I have. Because, like I said, the family situation was not good. Also my younger sister, for years it was--we were each other's support. To this day, my sister sends me a Mother's Day card. I think that was--we would go to each other and say, "I'm really hurting today."

How did your friends relate to you after your mom died?

Some of that's strange, because you're almost like a foster child. Some people treat you real weird. Actually, parents would be like, "Well, I'm not sure if I want her to come over to stay the night because she doesn't have a mother and she's not monitored."

How did you feel about that?

I didn't realize so much how I felt about it until I read David Pelzer's books. I don't know if you "A Child Called 'It'". He talks about the fostering situation and I thought, you know that's how I felt when I was 13. Almost like you're an oddball or something, "She's the one who doesn't have a mother." At first people were sympathetic but then you did have some of that attitude that, "I don't know if I want you running around with her because she doesn't have a mother to watch over her."

Looking back, what do you wish you had done differently?

Probably sought out some other kind of support. But at the time I don't even know where that would have been. That's kind of a tough one. I'm not sure. [laughing]

Okay. Delores, can you share with us how you first dealt with the loss of your mom?

My mom, as I said before, I was close to her. And I think mine is different from the other two that I have listened to. I spent a great deal of time with my mother and I think a lot of it was my childhood disability. I felt close and loved by her, and when I was with her, everything was okay with me. Knowing and seeing her go through what she went through, it was heartbreaking for me.

It was heartbreaking to see her so sick?

Yes. And once we found out--well, we were told that she would live 14 months. Which she did live 14 months, to the day. We had the opportunity of talking. It was eleven of us. One of the sisters did not get along with my mother. The Monday before she passed, she was calling my sister. It was like she was semi-conscious, in and out of it. She wanted to see this sister. And I made sure that she was there. And when she was at the house she told me I could leave. I closed the door where they were, to where they could say what needed to be said. And to this day, I do not know what was said, but I know it gave her a peaceful mind to let my sister know how she felt.

Can you tell us how you felt after your mother died?

Oh! I felt so alone! When my mother went down in the grave, a part of me went down in that grave with her. What kept me close to her, even today, which it is 26 years later; I still have some of her gowns that I sleep in at night. And when I put those on at night and crawl in my bed, I still feel close to my mom because I know this belonged to her. And just to know that she is at peace and that gave me peace.

So you knew she was suffering, she wasn't getting better, so you got some peace from knowing that she was at peace?

Yes, because just to see her there, to be in pain and knowing that I couldn't do anything. One thing that she shared with me, with my own children, she said, "You know the Lord has answered my prayers. Eleven children are grown." And she said, "What you have to do now is think about your children. They need you." Because I always said that if my mom died, I felt I would die and she knew how I felt. But we had our conversation and she's telling me, "You got to live for your children. They need you now." So we did have the opportunity to discuss things that I should do for my children.

So, your mother's words helped you move on?

Yes.

Going From Caregiver To Patient

One thing interesting about our guests is not only did a couple of you lose your mom to cancer, but you've been through cancer yourself. Diane, when you were diagnosed, you had already been a caregiver for someone who died of cancer. How did that experience affect your reaction to your diagnosis?

Oh. Wow. [laughs] When I got the diagnosis-now, of course, my daughter is 13--and my surgeon tells me that it is cancer. Of course, the first thing that runs in my mind is that it goes back to what cancer is 36 years ago. And right away, I'm thinking that my daughter is going to lose her mother.

And of course, I had to work through all of that.

How did you work through all of that, Diane?

The wonderful support groups. I had a very, very close friend who three years ago was diagnosed, and I had found out that she was. And I have no idea how she found out the day that I was but she called me that day and said, "I'm here for you." And so through the Cancer Society's support group, this helps me tremendously.

What else helped you?

Religion. My faith. I now use the term "blessed with cancer", because there has been so many good things that have come out of it.

Yes.

I was diagnosed during Lent. I thought I had a faith before but I had nothing before it went into cancer as far as faith goes. [laughing] I have just grown immensely through the cancer. Yeah, my husband. My husband has been a saint through all of this. He has been my partner, and again, I think the term was used "we". He said at the very beginning "WE are going through this. Not just YOU." He has been there through every incident that I have gone through. He has been there with me.

How did you separate in your mind what happened to your mom, with what you were going through?

I don't think I actually did that until I went into radiation. My first radiation, my regular every-day radiation, I had at one particular hospital. But for my boost, my booster radiation to my scar, I had to go across town because that particular hospital had a bigger unit. That happened to be the hospital that my mother died at. So when I went in to the radiation--I hadn't remembered--but when I walked in that room, I knew I had been there before. So I probably was there with her. So, when I went in there, I mean, it was horrible. You see it in the movies, people reacting to things déjà vu like. [laughs] But you know, the nurse, the radiation nurse, took me through. She was just fantastic and basically said, "This is not your mother's cancer."

So having all those memories stirred up actually was a good thing?

Yeah. I think--

Because it brought the issue to the surface.

Exactly!

And you could address it.

And jolted me right out of it! [laughs]

Now, did you find yourself ever slipping back? Where, even though intellectually you were separating your experience from your mother's thirty years earlier, something might trigger fear?

Actually, I think my daughter and I were watching the movie "Step-Mom". I had three lymph nodes that were positive. In the movie, Susan Sarandon's character--and nothing was clinically correct in that movie--

Okay. [laughs]

[laughs] So, her doctor is telling her, because she had three lymph nodes positive, she was dying. So my daughter turned to me and she said, "Didn't you say you had three of them 'thingies'?" [laughs] And I said, "Yes, I do." And I said, "Number one, there is nothing clinically correct about this movie." [laughs]

Exactly. It's a movie.

My daughter was not talking to me a lot. The movie made her talk to me and ask me questions. As I'm explaining to her why, it took us a half-hour to get through this. And as I'm explaining to her why it's not correct and why that's not going to happen to me, I'm telling myself why.

Uh-huh [yes].

And I realized after that, what just had happened.

So, helping your daughter, helped you?

Absolutely.

How did your mom's handling of her diagnosis with you, affect your handling of your diagnosis with your daughter?

I've said it many times as I was going through it, that her strength, that I think I pattern. Maybe she didn't tell me exactly what was going on, but she was so strong through the whole ordeal. And you know, people say to me, "Oh, you seem like you have it all together." I just credit that to my mother, the way she was, and how she handled it. And I think that in turn is the only thing that I did say to my daughter--that when my mother passed I didn't know what was happening--is that I would tell her every step of the way. My daughter is very intelligent, as well as my older daughter, too. I told them both, "I will be telling you all along exactly what's going on with me." Because that was the one really hard thing to take, is that I didn't know what was going on.

And what about during recovery? Have the lines of communication been kept open?

Oh yes. Yeah. My older daughter is away at college. I think there's an issue there because, it's like, as long as she's away--. She hasn't come home very much through this. But, we've just recently communicated that to each other and talked that out. So I think I had to give her that time to sort of absorb everything. But, the younger one will find every excuse in the world to be next to me, to do things with me. She is not real well at wording her emotions but I think this has drawn her out. In that, as long as I give her her space to come to me, I think she is dealing with it real well.

Delores?

Yes.

Can you share with us how losing your mom to cancer, affected your reaction to your diagnosis?

Losing my mom to cancer, I learned not to wait once I found this lump in my breast. Because sometimes you find these things, and knowing that you have lost a family member to cancer, we go into denial. That there's nothing wrong with me and I have seen this; to really be afraid to go and find out what is wrong with them. And I will say, "If you go and find out what is wrong with you, you have a better opportunity of being a survivor." That is what we tried to get my mother to do. But in her mind; like I said, 26 years ago--as Diane was saying--that she really didn't believe in going to the doctor. Where we have the opportunities now, to go and find out what it is.

So, when your doctor said, "Don't worry about your lump", you said, "No, I need to know."

Exactly! Because of losing my mother and I felt the lump. I was 43 at the time, had never heard of a mammogram. He felt the lump and everything, and told me, "If you were my mother, I would tell you the same thing." "I'm not your mother; let's find out what the lump is!" Within two weeks I had a biopsy. It was cancer. I had lost my breast and I had chemo and radiation. And if I had listened to him, within six months there's no telling how far my cancer would have gone, because it was in my lymph nodes.

So, your mother's experience gave you the courage to go ahead and get evaluated?

Yes.

What about your reaction after you found out it was cancer? How did losing your mom to cancer affect your reaction to finding out you had cancer?

Well, how that affected me finding out that I did have cancer--the only thing that I could think about at the time, was that my mother had only lived 14 months and I was going live 14 months. My thought was, "Who will take care of my children?" I had three small children, and that was my whole thought of dying, really. I thought I was going to die in 14 months.

Delores, how did you work through that?

The way I worked through dealing with dying within the 14 months--I'm going to be honest with you. I had a friend to come to my room and take me to a cancer support group meeting. To let me see that there were survivors there had survived 25 years and longer. And that because your mother died in 14 months, this does not mean that you will die in 14 months. Your cancer is different than what your mother had. And plus, you are a different person than your mother.

And treatments are different.

And my joining a support group very early helped me learn to deal with the cancer and still being in denial. If it had not been for the cancer support group, I don't think I could have dealt with the cancer as well as I did.

So the cancer support group was vital. And there are lots of different ways to get support, in addition to support groups that meet. There is the support on the Cancer Survivors Network, which is kind of a virtual support group of sorts.

Yes. Well, I didn't know anything about the Network and things of this but as now I have a daughter that is dealing with some medical problems. But so far, everything with her lump, they have been benign. And right now, I'm dealing with her.

Reaching Out: Reading, Writing and Talking With Others

Well, Delores, other people helped you separate and deal with your situation. Many cancer survivors talk about how other people turn to them since they've been through it. So, do people turn to you for advice or comfort or inspiration on dealing with the loss of a parent to cancer?

Yes they have, through my e-mail address. Well, my first little book that was just published in my home town. But this particular book that is out there now, they have come back to me. A lady e-mailed me last night and was telling me that she was so glad that she had read my book before her friend was diagnosed with breast cancer three weeks ago.

And your book is called, "I Believe in Myself; I Don't Have to Cry Any More"?

Yes, Cancer Survivor, Plus. And she was saying that she could relate to her, and listen to her, and understand some of the things that she was dealing with. Instead of listening to her and didn't even know what she was talking about. Because, in my book I have a glossary on terms that are dealing with cancer. So many people have said that the book was so inspiring to them.

Well, why don't you put a website up on the Cancer Survivors Network and list the title and the publisher of your book, so other people can find out about it?

I will.

[Editor's note: Delores' book is available from major book retailers on the web.]

Now Diane, what about you? After you lost your mom, did other people turn to you for advice, comfort or inspiration when they were dealing with the loss of a parent?

I had one or two friends in high school that had lost their mother. And yes, it's like something else. You need somebody who has gone through it, to feel that you can really relate to each other about it. And remember, there was a first time in my life, when I had that experience of being able to help somebody through that. So, when my kids joined a 4-H club through the extension service, we had started a group--as I had been a 4-H leader with foods and nutrition club--and then we had come across a couple kids who had lost parents. We had decided there was a need there for a support system of kids who had lost their mother or their father and needed, you know--. So, I have had opportunity in that way to reach out to people who have been in the same situation.

What do you think helps them the most, Diane?

Probably, I think, like I said, just the idea that if you've been through the same situation, you can relate to what they're going through. What I've found in a lot of cases, when you're a child--I don't know whether to call it selfish--you're looking out for yourself at the time. And when you lose a parent, it's like, "Well, who's going to take care of me?" I think to reach out to the actual functions that kids need. To show them how to fix their own breakfast or to show them how to take care of their selves. I think that's a big part, a lot of times, in the support of kids who have lost their parents.

And what about the emotional issues?

Oh, definitely! I'm an emotional person anyhow, so I kind of jump into that area right away, [laughs] and maybe too much sometimes. I don't know. Maybe I think that consoling someone else is helping my insides as well. So, I do have a tendency to latch on to that right away. We had two kids that were in Brownies that were foster children, and it was like I latched on to them so much. And of course, then it was really painful whenever they left.

Suhaila? What about you? Since you've lost your mom, have you been in the situation of others turning to you for advice or information or support?

Not really. A friend of mine just lost her mother on September 13th. She is older than I am, but we talked. Her mother was diagnosed right before my mother. Me and the friends that I have that have lost their mothers, we all talk, and that's about the extent of who I--. They turn to me, I turn to them. Just because we all know what each other has gone through. And like Diane said, I have never heard anyone say it quite the way she did, but I feel that pain in my chest, too. I've never, never heard anyone put it like that.

Ahhhh. It's a physical pain. [laughs]

There have been days, at first that I just couldn't get out of bed. It just hurt so bad. And I never really understood that it could hurt like that. And she [Diane] just put it so well. But nobody else can tell, until you go through it, you don't understand that it is a physical pain. Thanks! I'm not crazy! [laughs]

And I think what we're seeing is that sharing is so helpful in terms of seeing that you are not the only person to be experiencing something. These are common reactions, universal experiences when someone has lost someone important and sharing either through a support group or in counseling, through the Cancer Survivors Network, with friends, family, clergy. There are so many people and resources available to help people through the grief process. Grief is a normal human reaction to loss. And just as learning about chemotherapy can help you get through the chemotherapy, learning about grief can help you understand what's happening and get through the grief so that you can embrace life again.

Before we close, I'd just like to go around once and see if anyone has any last thoughts they'd like to share. Diane?

Yes. One of the major breakthroughs that I had was the name of a book, "Motherless Daughters."

Do you remember the author?

No, I don't.

"Motherless Daughters" is the name of the book.

And again, if you set up a website you might want to include that in your summary that you recommend that as a good book.

Okay. It helped me tremendously. It goes through the fact that there's no difference whether you lost your mother as a child or as an adult woman. The pain is the same, you know. And it's a really good book.

[Editor's note: "Motherless Daughters", author is Hope Edelman, published by Dell Publishing Company, Incorporated, March 1995.]

And there are other grief recovery handbooks and parent guides for children who are grieving that are available. And maybe talking with a grief counselor may help direct you to a resource that might be helpful. Suhaila, any last thoughts before we close?

This has helped me tremendously. And I think the women that you have on are very strong and very, very lucky to have the kind of people they have in their life.

Delores?

Yes. Myself, what I have done: I got involved in Reach to Recovery, Hospice, and I got involved in Relay for Life. For two years we had a team. Our team has turned in over $2,400 for the American Cancer Society.

How wonderful!

I find that if you find other things to occupy your time this will give you peace of mind. Because I do arts and crafts and I write. I do things I like to do. Not based on what someone else tells me to do. I think that family members should discuss if someone in the family has cancer. My family, we have not discussed on the whole, with me having cancer. And to me, I feel there is still, if I can say, denial. Because we can learn from each other if we discuss the cancer that the sister or brother has gone through. And that I have not had. So, you know, I think that should be done.

Talking can be healing.

Oh yeah.

And I really hope our discussion has helped you sort through some of the issues that may be part of your life. A big thanks to our guests, Suhaila, Diane and Delores, for their willingness to share their stories, thoughts, feelings and a part of their lives with us today. I hope that some of their experiences will help you think about and talk about your own concerns in healing ways. I encourage you to listen to other discussions we have available on the website or by telephone. For the American Cancer Society's Cancer Survivors Network, I'm Dr. Wendy Harpham, wishing each of you a great day, today and every day.

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