[Sandra]

Like so many in my generation, we live far away from our real families. Our group of friends has become extended family members and so, when Jean needed help, we all pitched in. But, it seemed logical to me - and I guess to the rest of our circle of friends, that I should be the coordinator of our caregiving efforts, so to speak, because I am an oncology nurse and live near Jean.

[Jean]

I visited Sandra just before I was due for a follow-up appointment with my oncologist. I had been feeling really good. My job was settling down. My daughter, Erin, had become a lovely, busy, popular, and happy teenager.

[Sandra]

She really is something else. [Both laugh]

[Jean]

[Pauses] My husband, Hal, and I had had some rough spots in our marriage before I was diagnosed, but we had been able to work things out. I'm so grateful for all of my friends, especially Sandra. She has been so helpful right from the time I was diagnosed. She helped me find a cancer doctor who I really like. Sandra was able to guide Hal and me in figuring out how to talk to our daughter about my cancer. And because she'd known my parents as long as she'd known me, Sandra was, and still is, a communication link between my family back in Nebraska and me. She helped them understand what is going on with me and my cancer treatment.

[Sandra]
 
That's what I do. And to help someone who's been such a good friend… it means a lot to me to be able to help Jean. Well, when Hal called me with the news that Jean's cancer had come back, I was stunned, even though I had always known that this was a possibility. But, once we got over that first shock, I started work to "rally the troops" again. At this point, one of my major roles as a caregiver was to help Jean - and Hal too - gather information so they could make decisions about her treatment. Jean asked me to go to her next doctor's appointment with them so that I could be another set of ears. She knew that her state of mind might not let her take in all of the information she needed to hear from her doctor. Of course, I was glad to go with her - honored, really, to know that she trusts me that much. Jean, Hal, Erin, and I had a long talk, and they decided to wait until they made a treatment decision before telling Jean's parents. 

[Jean]

Yes, we knew that there were just so many important decisions that I - well, and Hal and Erin too - would need to make. I really thought then, and still think, that involving my mother and father at that stage of things would have just complicated our decision-making process. Plus, I just didn't want to have to worry about them then. I knew this news would upset them a lot.

[Sandra]

Looking back, it seems like that turned out to be the right decision. Jean's father had always been a "take charge" sort of man. His first reaction would have been to fly out here and take charge. It seems like no matter how old we get, our parents will always be parents. At first, it was hard for Jean's parents to see any of us as adults - instead of the teenagers we were when we first became friends. But eventually, Jean's parents came to see, and even admire, I think, the mature way everyone pitched in to help their daughter. We all became sort of like teammates fighting to win - whatever way was best for Jean.

[Sandra]

I think the decisions that had to be made involved a lot more issues than Jean, Hal, or their families ever imagined. Of course, the first decision involved the kind of treatment Jean should have. Very early on, she was leaning toward being in a clinical trial, but Hal wasn't so sure. We spent many hours talking about the "pros" and "cons" - weighing the risks and benefits of all the treatment options Jean's doctors presented to us.

[Jean]

Well, almost every cancer survivor I've met says that, "once you have cancer, you are never the same" - and that sometimes, after cancer, they were stronger, better now, than before they had cancer. I think this is what happened to me. My cancer diagnosis reminded me in no uncertain terms that I'm not going to live forever. I mean, my mortality is not a big surprise. I had also decided that I wouldn't let the cancer rule my life. I knew that if I let things get me down, I'd run the risk of spoiling the time I do have.

[Jean]

But knowing that I am mortal - that someday I'll die - pushed me to get my affairs in order and make sure that my family would be okay. First of all, I updated my will. I had a lawyer help me complete what they call an Advance Directive. That's a legal form where I put down on paper what choices I would make if certain situations come up. The Advance Directive will make it possible for Hal and my doctors to follow my wishes even though I may not be able to speak for myself at the time that treatment decisions need to be made. Basically I say in advance what I want to happen to me. Filling out this form helped us talk through all the complex issues of what I want to happen if my time to die comes sooner rather than later. Hal and I found an accountant to help us work out some financial issues, and ways to make sure that Erin can go to college, even if it's some sort of loan program. We asked a lawyer about viatical settlements - where I would sell my life insurance policy to a company to get my life insurance money now. This doesn't seem necessary at the moment, but we know the option of a viatical settlement is there if we want to consider it later on. Having all of these discussions behind me was a big relief and it let my family and me focus on getting through this. Being clear on what I really want helped my family, Sandra, and the rest of my caregivers by taking a lot of the uncertainty out of the future.

[Sandra]

Yeah, that's right. It was important for all of us who were helping Jean to know exactly what she wants. Now, no one has any doubts about what we should do and what we shouldn't do. It was important to Jean to continue to be involved in her own care and in making decisions. That sort of control would always be important for her - and really, for all of us.

[Mary]
 
Last year, right after we celebrated our 45th wedding anniversary, my husband began having severe pain in his left jaw. Our dentist couldn't find a problem with his teeth and ordered more tests. We were shocked to learn that he had a cancerous tumor in his jawbone. The doctors explained that the only treatment was surgery - pretty radical surgery. It was very hard for us to take it all in, and things seemed to happen so fast. I was surprised at how short a time Bob was in the hospital after surgery, and I didn't get very much training about his care before he came home.

[Mary]

Even with the home nurse coming by to change his dressings, there was so much to do. Preparing his special food took a long time each day, and we had a hard time keeping his pain under control. But most of all, it was hard dealing with Bob's moods. At first, he seemed angry at everyone, me included. He didn't want any visitors, and he refused to go out. He said he felt like a freak - that he didn't want people staring at him. The doctors had suggested reconstructive surgery, but Bob was having none of it. He said they had already put him through enough. Every time I tried to bring the subject up, he would get angry and more withdrawn.

[Mary]

Another hard part was that Bob wanted me with him all the time. We have always been very close. We never had children and our relatives all live some distance away. But we had an active social life here and I thought we had lots of friends. Yet, after a few weeks the friends just seemed to fade away. I guess I can't blame them - Bob didn't make them feel welcome when they stopped in after his surgery, so soon they just stopped coming altogether. I began to feel more and more isolated, and sometimes I was even mad at Bob too. Sometimes, whole weeks would go by and I didn't see anyone other than Bob, and he seemed more and more depressed. Some days he hardly talked to me.

[Mary]

Through it all, my minister kept coming to visit, and he kept encouraging me to get out more. He even offered to help arrange for some people to come by and stay with Bob while I went out, but Bob didn't want that. Finally, my minister told me right out that he thought I needed some help. He suggested I call my younger sister and ask her to come for a visit. I knew Bob wouldn't like it, but I was feeling pretty desperate. Well, Judy's visit was a turning point. When my sister got here, she was shocked to see us both. She had expected Bob to look different, but she said I, too, looked sick and exhausted. I guess I did look a sight, I hadn't had my hair done in months and I had lost a lot of weight. I just felt worn out. Bob's care was only part of it; mostly I just felt overwhelmed by the whole situation and by Bob's reaction to it.

[Mary]

My sister just took charge. First thing she did was make a doctor appointment for me! I had a physical, and the doctor said my blood pressure was a little high, and I was anemic. Most of all, he said I needed some rest. I told him how worried I was about Bob, how he seemed so withdrawn and depressed. Dr. Morris has been our family doctor for more than 20 years. He called Bob right on the spot and told him he wanted the home care nurse to stop by again. To my surprise, Bob agreed.

[Mary]

When the nurse came, she spent a lot of time talking with both Bob and me about our feelings. She called Dr. Morris, who ordered an antidepressant for Bob's depression. Again, I was surprised that Bob agreed to take the medicine. I could see a difference in Bob's attitude over the next couple of weeks.

[Mary]

Meanwhile, Judy took me to the beauty shop and we went together to my Bible class. She also took me to the cancer resource center at our local hospital. There was a social worker there who suggested I might want to join a family caregiver group. It sounded like it might be a good idea. My sister went with me to my first meeting. It was so good just to see that others there had had problems like mine. After the second meeting, I began to understand how important it was to take care of myself and to feel connected to others. I made an effort to call up some of our old friends and get together.

[Mary]

One of the best things that happened was that the husband of a woman in our group also had gone through head and neck surgery for cancer. And he had had the reconstruction work done. I invited this couple, Jim and Betty, to our home for dinner. Jim and Bob really hit it off. They liked many of the same things - especially golf. Bob said he hadn't played golf in almost a year - that he couldn't stand the thought of people staring at him. Jim said he felt the same way at first after his surgery, but he refused to let cancer rob him of the joy of golfing.

[Mary]

About a week later Jim stopped by early one Saturday morning, and he actually talked Bob into going out to hit a few golf balls. And just yesterday, Bob told me that he had been thinking about going to see that plastic surgeon that his cancer doctor recommended.

[Mary]

It seemed like we had both gotten so far down after the cancer, that we couldn't get out of the situation by ourselves. I just stopped realizing that there were people who cared about us and who wanted to help - my minister, my family doctor, my sister, and many others. I go to the caregiver support group every week. It helps me to realize that I'm not the only one with problems, and it helps me put my problems in perspective.

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