Cancer Support Group: The importance of joining (cont.)
Moderator: What does the care giver go through?
Schimmel: There's an important changing role for the care giver. There was a time when patients went into the hospital, and have a procedure over several days, but now hospital stays are much shorter... so the role of the care giver is changing, because suddenly s/he has to carry out some of the responsibilities that used to fall on nurses in the hospital. Maybe changing tubes, dressings, giving medication... and in addition to all of that, they have to juggle their responsibilities. So that's one of the issues, unique to the role of the caregiver that didn't used to exist. The caregivers deal with their own sets of emotions. They are themselves feeling that they didn't sign up for this, having fun in life may be difficult, people will ask what they can do to help a friend ... caregivers need extra support and attention. Everyone calls to find out how the patient is doing, but people need to call to find out how the caregiver is doing. Volunteer to do something tangible; the laundry, or shopping, or a ride to the doctor. Give the caregiver or the significant other some time off -- take him or her out, encourage communication, or give them the night off. The caregiver deals with feelings of anger, and then may feel guilty for feeling angry. They're exhausted. Who supports the caregiver? Doctors need to work with the caregiver too. The caregiver also has a special role -- they can be the patient's #1 advocate, and allows the caregiver to feel that they're doing something positive. What worries me is that there's not enough support for the caregiver. There is a National Family Caregiver's Association - 1-800-896-3650. Or call 301-942-6430, and their website is www.nscacares.org
Moderator: How did you work through the initial diagnosis: CANCER?
Schimmel: First I had to work through a lot of anger, and focus that anger into something positive. I knew I had to get a hold of it, and I also knew I was real scared, and I masked my fear with anger. So the first thing I had to do was really deal with the fact that I lost my mother to cancer, but that didn't mean I had to die too. I had developmental issues I had to contend with -- such as, I went to a support group that I was the youngest person in the group, and everyone else had children, family, businesses to deal with ... and I was just returning to school. I couldn't relate to my group, and so I had to start one for young adults. Then I had to really get into my head, and deal with brain and not my emotions ... because I had important decisions to make about the treatment. So I learned not to be emotional, and be focused ... I had to be clear-headed. Let me tell you, first I had to go through a couple weeks of big emotional ups and downs, fear, depression ... all of that. Then I had to go from doctor to doctor, because I was determined to find a doctor I could partner with. I knew my relationship with an oncologist would be a long-term one. I had to find one I could communicate with, and would let me be a partner in healing. No one has to make a decision about treatment overnight. You have to cut yourself enough slack and do the research. I went doctor-shopping, then looked at all my treatment options, because the decisions I was about to make, whether surgical or chemotherapy, were not reversible. I would have to live with my choice. And that's why I feel so strongly that everyone needs an advocate to help them. Don't go a doctor's visit alone -- take someone with you to write down questions. If you have someone with you, you can have a discussion about what was said. Someone else was there who was clear and could clarify information.
Moderator: Is the emotion more difficult to deal with than the treatment?
Schimmel: The emotions can definitely color the whole treatment experience. Oftentimes, the treatment is worse than the cancer. I didn't feel sick from my cancer, but from my treatment. There are drugs available for nausea, fatigue ... what we hate hearing is "you're lucky to be alive". Quality of life is very important to us. But I went through chemo without any of the drugs available today for nausea and vomiting. So quality of life is really becoming a factor in oncology. Finally, thankfully.
Moderator: What if my physician says let's go right in to surgery?
Schimmel: My reaction is to go get a second opinion. You can't be rushed into surgery. Any doctor, if you're worried that you're going to make the doctor feel bad ... well, it's your life. Most doctors will feel very supported and satisfied if their patient gets a second opinion, because when the patient comes back, they have a much more compliant patient. There may be an individual case where a growth may have to be removed immediately, but overall, you can take a week or two to make some decisions -- you have to, because you'll have to live with those decisions. But I'm an advocate for second opinion. But if someone is having an obstruction, there are situations where surgery becomes a vital necessity ... but that's not the norm.
Moderator: How do you feel about alternative cancer treatments?
Schimmel: I prefer to call them "complementary," the reason being -- and there's a chapter about it in Cancer Talk -- usually when you say "alternative," you're talking about something you're going to go to "instead of." We live in a Western culture, and there's a lot to be said about western medicine. Given that, I also believe that integrating complementary approaches is the best of all worlds. Some people seek out alternatives to cancer therapy because they don't trust conventional medical approaches. Again, I'm an advocate of integrating complementary medical therapy with medical care. I myself integrated homeopathy, Reiki (which is hands on), diet, meditation, acupuncture...
Moderator: How about Laetrile?
Schimmel: I don't think its the cure for cancer. People are hopeful that they will find a non-toxic cure for cancer, and the problem for those of us who follow conventional therapy with unconventional approaches, is that we want to see data. If someone would really do an authentic clinical trial on Laetrile, then maybe we could document whether or not if has any effect at all. The clinics are all in Mexico, and someone is going back any day and say that the FDA is preventing because of the economics. Let me tell you, doctors gets cancer, doctor's children get cancer ... if there was a cure, do you honestly think it could be suppressed? I say not. But I will say that people recognize the incentive to take their last dollar and get to Mexico by promising you a cure. When my mother was dying, and I speak from experience, I drove to Mexico and checked out one of their clinics ... and I remember asking them where they kept their oxygen, and there wasn't an oxygen tank the ... that clinic, this was their last hope, and it was a crime. They went there, but the odds were that they didn't leave there walking out. We hear about all the people so-called "cured," but what about all the people that died? You want to integrate Laetrile with your conventional treatment, go for it. But don't abandon western medicine. When I was diagnosed, I went to talk about special diets, and the doctor pulled on my earlobe and said based on my earlobe, he could tell why I had cancer, and asked me to go on his diet without chemotherapy or radiation therapy. This was not the diet for me as a Western woman. How could someone say to me, "Trust this diet based on my earlobe, and don't take any conventional treatment." We would never be on this chat today. But what I did do, was de-toxed, and integrated that diet into my life in conjunction with my chemo and it made me feel more powerful and more in control, and that I was being kind to my body and doing something to modify the more toxic impact of the conventional clinical option that I had chosen for myself.