Cindy asked me to discuss pain with you. I help my cancer patients with pain every day. Our philosophy is that patient's pain is what they say it is, not what the doctor or relatives think it is. I remember when I was a skinny kid and I told my Daddy that I was cold outside in the weather. He always told me I was not cold. I said to myself, I sure feel cold, but I guess my Daddy knows for sure. After caring for my patients, I finally said to myself: Daddy, I really was cold and I know for sure now I was cold outside in that weather. My Daddy could not really feel the cold down into my bones and no one else can feel your pain even if they say they can!
A national trend is moving out to help our cancer patients with pain. It is the patient's right to have relief from pain. Many doctors are fearful of some of the state laws that will accuse them of abusing their prescriptive privileges of opioids. The doctors that are the most comfortable in treating pain are those affiliated with hospices. Now hospice scares some patients, because it means to many that they have given into their cancer and will die, but hospice has gotten a bad rap. Many times the patients that have been told they will have to live with their cancer expect to live with the pain that goes with it. This is no longer necessary. Hospice will give patients enough pain medication to get out of bed, go on vacations, or to enjoy their families. We, working with hospice patients, actually see patients get better because their pain is controlled which in turn takes care of the depression which in turn takes care of the poor appetite which in turn takes care of the lack of sleep which in turn takes away the frightened feelings your pain gives other members of the family. Patients actually stop watching the clock for their pain medication, because the long acting pain pills take care of the pain 24 hours a day.
People then tell the patient with cancer that they will be addicted to pain medications. I ask patients, "If you did not have cancer, would you take pain medications?" They tell me, "No". Well, then, I tell them they will never be addicted to pain medications. If our patients suddenly had no cancer, we could take them off all pain medication in just a few days with no residual effects. A few rare cases (1 in 2000) may have trouble, but it was found in a study, these cases were related to previous addictions.
We want to value each day whether we are in pain or not in pain. We believe valuing a day is easier without pain. If you do not have a sympathetic ear about your pain, a suggestion is to find one. A very good friend of Cindy and mine died recently. I helped him use his pain medication correctly one month before he died. After he took his first real and correct dose of good pain medication, he looked me in the eyes and squeezed my hand saying: "I wish someone had given me this medicine three months ago!"
The last myth I must get out on this page is, "If I take all the medicine now, nothing will be available to me at the end of my life when the pain is even worse." The doctor will not run out of pain medication no matter how bad you believe you will get later. Pain medicine is adjustable and can be increased as you need it.
Pain is not just physical, it is in every section of our lives and the hospice teams are experts of taking care of those other little or big pains that interfere with those precious days. If you want, get on the phone and call a hospice which will be in the yellow pages of your phone book. Please do not worry about what your family, friends, or doctors think about you getting some answers about YOUR pain. Most insurance, Medicare and Medicaid will pay for all of the hospice bills. Many times hospice will take care of people even if they have no money.
For a free booklet on pain, you may call 1-800-4-CANCER and ask for the Patient Guide to Managing Cancer Pain. Physicians who specialize in pain management are usually affiliated with hospice organizations. The National Hospice Organization (1-800-658-8898) in Virginia is a resource for professionals, as well as volunteers and the general public for the terminally ill patients and their families. This group can help you locate a hospice near you.
Virginia R. Sicola, RN, Ph.D.
P.S. Your letters and notes printed in the newsletter have helped me be a better nurse. Thanks to all of you!
Copyright © 1993-2000 Conversations: The International Ovarian Cancer Connection, All Rights Reserved.