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,"
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
"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,"
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.