NEW YORK-Many cancer patients struggling to return to normal life still believe in the John Wayne school of psychotherapy: "Tough it out, stranger," quipped Allen Levine, ACSW, at a symposium on fatigue and cancer, sponsored by Cancer Care, Inc.
But the problem of fatigue is a serious one for both cancer patients and their families. "The energy required to enter the culture of cancer is tremendous," said Mr. Levine, assistant director of social service at Cancer Care.
In the acute stage of cancer therapy, fatigue may cause patients to have a short attention span and poor impulse control, with unfortunate consequences for their social interactions. They may tend to say what they feel too quickly. "They have to be helped to understand that their feelings may be out of control," he said.
In the early stages, family and friends mobilize around the patient. They call, visit, bring food. "And then slowly something happens," Mr. Levine said. "As the disease becomes chronic, people stop visiting. They call less frequently. All of a sudden the patient experiences a type of social isolation."
The period when the patient is at home but still in need of care can be particularly trying for the primary caregiver, generally a spouse. Since cancer often strikes people over age 50 or 60, their partners are also likely to be older individuals with their own medical problems.
Many patients do not want a homecare worker in their house. In what Mr. Levine calls the "multiple family," the primary caregiver will get help from other relatives so that she or he can get out of the house and take a break. But if the cancer patient's family is "one-deep," the primary caregiver will be overwhelmed.
"We have to take a look at the various kinds of depression and anxiety that can occur when you become a prisoner in your own home," he said.
Providing constant care for a spouse-giving medication, helping them get to the bathroom-can cause tension, he said. Caregivers may feel they have become containers for the patient's anger and frustration. "That has to stop. It's not helpful for the patients or the caregivers," he stressed.
Problems After Treatment Ends
The family enters another period of stress when the patient has completed treatment protocols and tests show no cancer. "Everything is supposed to be wonderful," Mr. Levine said. "The caregivers expect things to go back to normal. But the patient is totally fatigued and, in fact, may be more depressed than before. Then the family may get angry with the patient."
They should keep in mind, however, that this is a time of great anxiety for patients. Before, their energy was mobilized to deal with the treatment. Now, they start wondering whether their cancer is coming back. Also, when radiation therapy ends, they are at their peak of tiredness from the treatment, he said.
Partners who expect to go back to a normal sexual relationship may wind up feeling rejected. "The phrase 'Not tonight, dear, I'm tired' has a different meaning when you've been on chemo," he said.
It is very important to help people to look at these issues and to reconstruct the intimacy of their relationships as the disease becomes chronic, he advised. But first the patient must be given permission to be fatigued.
Health-care professionals can help by letting patients know they are aware of these issues, making it possible to talk about them. "Patients should know that they do not have to be ashamed of their feelings, or of their fatigue," he said.
Participating in support groups can be extremely helpful. But groups that meet in a hospital may reopen the trauma of treatment, Mr. Levine advised. He noted that in some cases teleconferences have proved valuable, especially for fatigued patients. "With 25 people on the phone, you would think it would be chaotic. But people are so desirous of listening, as well as being heard, that it's an incredible process," he said.