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Communication with Loved Ones

The following article is excerpted from Chapter 9 of Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition, by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Before couples can make accommodations like this, however, they must be able to communicate openly about what is going on. This is often extremely difficult, as Joleene Kolenburg discovered during the time when the peripheral neuropathy from her Taxol treatments had left her bedridden over a several-months period.

When Jack and I left the oncologist's office on Monday, I could see that he was discouraged that the scan did not show better results. But as we talked, I said that I had a feeling that I would get many more reports such as that before I am through and we have to take the bad as well as the good (or something like that). When we got home after five hours, I was very tired, my feet were hurting and my emotions were shot. I cried quite a bit. He went to his regular Boy Scout meeting after supper, and when he came home he asked if I had called the girls. I told him I had not, but had sent them an e-mail. Like most families these days, I would only have talked to their machines anyway. I thought if I e-mailed them, they could call back at their timing.

Tuesday was uneventful, we had some company and I got up to visit with them, but my feet were still hurting. Wednesday morning Jack got up early and came in to see if I was okay. I told him I felt pretty good, but would stay in bed for awhile because a friend was coming to make my breakfast at 9:00. Just before she came, my daughter from Ohio called and was crying, and asked how I was. I said okay except for my feet, and she asked if I had talked to my doctor. I said there is nothing he can do for my feet. And then she told me that Jack had tried to call her and she wasn't home, and he had called our daughter in Illinois, and told her that I had given up, that I had come home to die and would not even call them to tell them. He indicated to them that there was nothing more to be done. He also told them they should come home as soon as possible. My Illinois daughter was, at that very moment, trying to get the oncologist on the phone. So daughter #1 called her and then daughter # 2 called me and said, "Who am I to believe, Pollyanna (me) or the Grim Reaper ( Jack)?" I could not convince her that I did not have the comforter over my head ready to give it all up. My friend had arrived by this time and took the phone and told her that I was smiling and hungry, etc., and I was not turning myself in yet.

When Jack returned from his nursing home ministry (he was a hospital chaplain before retirement--how ironic!), we talked about his calling the girls. I tried again to explain what I was talking about Monday when I said there would be more bad news. I also told him there were all sorts of other things that could be tried before I would give up. I just think he was scared and when I even mentioned my death just might come before his, he heard nothing else. I hope and pray that we will be able to discuss this more openly from now on, say what we mean and listen to what the other is saying. After 45 years, you'd think we could do that.

I am ready to die and not afraid of death, but I am not ready to leave yet. And I believe that the will to live is an instinct in all of us. I have thought constantly since diagnosis of how hard it would be to leave Jack alone. Since I have been in bed almost 16 weeks, I have thought of how hard the illness must be on him. However, I know how I would feel if it were the other way around.

Caren Buffum felt that her husband, Dave, who hadn't been much involved in her treatment decisions, seemed unaware of the seriousness of her situation:

I sensed that he was really in denial, couldn't deal with thinking about my having cancer--everything was going to turn out just fine in his mind, so why go out of his way to fix what didn't seem broken? What helped was coaxing him to a meeting at the doctor's office where I let the doctor speak to the issues, so he wasn't getting it all from me. The doctor was able to say enough about my situation to scare my husband (in my case, my scans had worsened) and my husband had a very strong reaction, after which, for a while, he was most cooperative. Recently, I got three bad scan reports in a row, and it was the first time Dave was willing to talk about my possible death and what it would mean for the rest of the family. Since then he has volunteered to do some of my nutritional preparation for me and is more sympathetic to my feelings and needs. Little by little, he is beginning to understand what it means to be a team in this fight.

In response to a woman who asked what she should do to improve her relationship with her husband who didn't want to talk with her about her cancer, Caren advised:

Be sure you are actively communicating with him and not just expecting him to reach out and guess what you need, as obvious as it seems to you. Try to ask as many questions of him that will encourage him to share his feelings and don't judge him or make him feel that there are right and wrong answers. He may be harboring concerns, but not know how to speak to them without feeling that he is encouraging you to dwell on the cancer even more.

Scott Kitterman had similar advice from the "receiving" end:

Mary has always been a very strong, independent person. It is difficult for her to ask for help. Our biggest problems have come from her reporting a problem and my misinterpreting the report. I typically think that she is providing information that she wants me to accept. Often what it means is I'm supposed to do something about it. The classic example is when she told me her back hurt three times in half an hour. What that meant was that I was supposed to give her a back rub to make her back feel better, but it was too hard to ask for help directly. We've gotten through that now. She asks for help when she needs it. If she doesn't, I'm more attuned to the chance that she might, so I ask her if I have any doubt.

Adding to problems in communication are temperamental differences. The "thinker" and "feeler" split, articulated here by Bob Crisp, is a disparity many couples will recognize:

She is much more emotionally expressive and much more in touch with emotions. This is probably one of the bigger differences between us and one that creates more problems. In a difficult situation, I want to think to a solution and she wants to feel to a solution. The two don't work well together. Yet, understanding this helps some. She appreciates my objectivity and rational approach to things--sometimes. And I admire her ability to be in touch with the emotional side.

Along with his rational, problem-solving approach, Bob also shares with many husbands a certain stoicism:

I am not an emotionally expressive person. Sometimes, but rarely, when alone, I may cry. Venting anger is a problem as it often wants a target. It's hard to target a disease, to target anger at cells that have bad DNA. Racquetball helps dissipate some of the adrenaline.

Kathy Stone's husband, Chuck, had similar stoic tendencies. Her discussion of this with him led to a crucial and satisfying change in their relationship.

Chuck was very quiet as he sat and drank his coffee and told me everything was going to be okay no matter what the diagnosis was... and it dawned on me that although we truly loved each other and he had always been there for me through lots of adversity, I could not and would not go through having cancer without talking about it and talking to him about it and him talking about it...the good, the bad and the ugly...all of it. It was going to be a must, a high priority and I might as well confront him then and there about how I felt...and so I did.

He acted very surprised and made some noises about always understanding, never trying to keep me from talking, etc., (which was all very true)...but I just kept insisting he understand that he was going to have to speak words, not just actions...I needed to hear from his mouth what he was thinking, how he felt, if and when he was scared...I needed to hear him speak of it openly to others, not be quiet about what was happening to us. It was one of the best things I have ever done. After reminding him of some examples of things he had always "stuffed" ...he agreed that he would try. It was hard for him at first because it is against his nature to discuss "bad" things...his family is very private...but he did it for me right from the beginning and as he did, it got easier for him.... He now sees the benefit of opening up to each other. He still is quiet and private, but will talk to others about breast cancer, about me, how I'm doing, how he is doing...but more important, he talks over feelings with me and lets me talk over everything with him...over and over and over I'm afraid.

When one partner is more expressive, even in the best of times, keeping communication flowing often takes continued conscious effort, as Caren Buffum found:

My husband and two boys are probably typical in that they are there for me, but don't always know how best to interact with me regarding the cancer. I wish, at times, that my husband was more aggressive in this fight with me--he does not initiate a lot of the "fighting activities" and rarely volunteers to join me for doctor visits, treatments, etc. But he clearly cares deeply and is willing to do pretty much whatever I ask. I think he has had a relatively high level of denial through most of this, and the faith that has been a source of great hope and comfort has probably also made him at times "too optimistic." I don't mean he has had too much hope for me--I don't think one can have too much hope. But his "everything will be all right" attitude sometimes interferes with his realizing that this is a very serious and difficult battle, and that we cannot become passive in our response to it. One of my biggest struggles regarding his involvement is wanting him to notice when I don't have the strength to carry the ball myself, and to jump in and pick it up for me. I am understanding more and more that I am expecting too much and that I must simply ask for what I need, because he is more than willing. But I struggle with feelings of guilt for asking too much, imposing myself.

Answering a wife who wrote that she hesitated to ask her husband for his true feelings about her illness, Glenn Clabo articulated some of the problems and rewards of the process:

I don't know your husband but I do know what it's like being a man dealing with this. My experience with Barb says you really don't want to know how he's dealing with this but you really should try to find out for all the right reasons.

The process was horrendous for us. When I finally got to the point of wanting to say what I made her cry. Even though it was a "good" cry.... I am a man and crying means hurt. That in turn made me want to stop. I'd clam up and make statements like "You ask.... I tell... you cry. Don't ask!" It took quite a few of these moments to get through it all. Actually, I don't think we'll ever get totally through it.

As you may know, Barb's situation is pretty bad. It's really not if, it's when. That's not something anyone should stuff. I've gone from not believing depression existed to...not being depressed was fantasy.

I guess what I'm saying is... If you really want to know, ask. However, make sure you really are ready to know. Be prepared for some difficult moments. Don't think that everything he says at first is really everything he feels. He may be much better at all this because of his education and training...but I still believe that unless he's worked his way through some man will be tough for you both. really is a great feeling when you finally get working on it and see how it is beginning to change how you look and feel about each other. We had a very good and strong marriage before all this. I believe it couldn't get much better than it is now.

In response to another woman's lament about her husband's lack of involvement, Scott Kitterman expressed his perception of what might be going on, and his belief that however grim the prognosis, being there as an advocate is an important role for family members to play.

I think what your husband lacks is a sense that anything he does will matter. If he can't affect the outcome, why bother to try? I think caregivers can affect the outcome. As I'm sure you know, the person being treated is not generally in an optimal frame of mind to defend her own interests. In my family, we have long had a policy that if someone is in the hospital, adult or child, you don't leave that person by him or herself (an adult does get to spend the night alone in most cases). This is because experience has shown us that the patient needs an advocate and no one in the medical community fills that role. Maybe what he needs is to know that what he learns and does will make a difference to your prognosis?

Attending a monthly group for couples dealing with cancer sponsored by the local Wellness Community led Caren and Dave Buffum to some new discoveries:

The group was very interesting. We got to talking about communication between spouses and it got rather intense at times. I feel this is especially good for Dave and me to hear how other couples are dealing with cancer, and boy, did we have some discussion afterwards. In fact, it was a pretty intense week as we brought all sorts of things to the surface. It felt very negative at first, because we were being more honest than we have been in the past, and sometimes honesty can hurt. But it gave us a place to move on from and I feel like we are now headed in a positive direction.

Despite the intimacy and openness of their relationship, Glenn and Barb Clabo found themselves constantly challenged by the fears they both felt:

I didn't realize how important the art of listening was. Barb always told me that I helped her by doing all the research. I helped her by taking on all the responsibilities of day-to-day life. But the biggest help I gave her was when I sat and just listened. Believe me it wasn't easy. I was programmed to help. I had to continually remind myself to not try to help...just listen.

Even though Barb and I were together for thirty-two years and took pride in how well we communicated, this fight led us to find new ways to talk. The tears and the anger took on brand new meanings. The hugs and touches went far beyond words. The fear was real. I can't tell you how many times that Barb indicated to me, in many ways, that she was just plain scared. Scared of the next chemo... scared of it not working, scared of it working so she could go on to the next torture... and, of course, scared of death. It started to come up more and more. Is there anything more difficult to face? It's never a good time to talk about it. It was always there and always on our minds.

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