Get Prepared to Survive
At our cancer center we have a ritual to celebrate the completion of each of our patients’ cancer treatments. When the last chemotherapy bag has run dry, the oncology nurse escorts him or her to a bell located at the entrance of the infusion suite.
An announcement goes forth: “They’re going to ring the bell!” There is a flurry of happy scurrying as staff members rush to join family and friends to witness the momentous occasion. If it’s a woman, she may don a diamond tiara (the ninety-nine-cent kind); if it’s a man, he’ll probably skip that part of the commemoration (or wear it for fun). The patient rings the bell amid a swirl of smiles, cheers, and sincere good feelings. The release feels great. Perhaps this moment was six months or a year in the waiting. Patients sometimes ring that bell again for emphasis and then hug those whose love and support saw them through; they may shout, raise their arms in victory, cry, or just exclaim, “I’m outta here!” As the patient leaves the center, however, the familiar path is somehow different. This time the exit leads not just to the outside but to the future-a future that is full of hope but also full of uncertainty. The transition from the end of treatment to the rest of one’s life presents many challenges. Few people can merely “pick up where they left off” the life that they knew before they had to confront cancer. For most, cancer changes everything. In the past, cancer patients received little guidance about coping in the aftermath of treatment or what to expect from follow-up care. Many survivors felt abandoned once the intensive therapy and checkups ended. All this is changing. In 2005 the Institute of Medicine, an expert health care advisory panel, issued From Cancer Patient to Cancer Survivor: Lost in Transition. This report outlines the many needs of survivors and directions for health care professionals to address them. It recommends that each person completing cancer treatment be counseled and given a treatment plan and summary (called a Survivorship Care Plan) outlining their follow-up care. This plan is to be shared with the patient’s primary care doctors to help coordinate care among providers. For patients living with cancer who require ongoing therapy, a modified plan is issued from time to time or when treatment regimens change. The typical care plan contains the following elements:
1. A summary of the patient’s diagnosis and treatment history
2. The potential long-term effects from therapy
3. Recommended cancer surveillance (tests and schedules)
4. Healthy living goals
5. Further discussion of family history and need for genetic testing
6. Reassessment of the patient’s emotional (psychological) needs and information on the community resources available to address them
7. Reassessment of the patient’s practical needs, such as those related to employment and health insurance, and information on resources to address them
I want you to know that the doctors, nurses, social workers, patient advocates, and all those who work with cancer patients understand that almost every patient will face some new psychological, social, and/or physical issue as a result of having to deal with this disease. Many dedicated professionals, volunteers, and organizations are available to assist survivors in dealing with cancer and its many ramifications on their lives. Sadly, many survivors do not find the help they need, either because they don’t feel they need it or their physicians do not make the necessary referrals.
For example, regarding psychological or emotional counseling, I have heard many patients and family members’ state, “I wish I had gone for counseling, but I didn’t.”
It is crucial that all people who are affected by cancer, no matter how strong they may think they are, seek out the appropriate help that will make their long-term recovery as full and vigorous as possible.
Survivorship and the Power of People
From the moment a person is diagnosed with cancer through all of the treatments and then for the rest of his or her life, that person is considered a cancer survivor. The “process” of surviving cancer is called survivorship, and it is indeed a process.
I am not a cancer survivor. Neither am I a counselor or therapist. Yet I have intimately witnessed the effects of this disease on beloved family members and friends. And I have cared for and learned from many people who have fought hard against cancer. Each has his or her own needs and each will handle the ordeal in his or her own way. I and all those who participate in caring for people with cancer are humbled and renewed every day by bearing witness to the tremendous power of the human spirit and the unbelievable generosity of the human heart. I have seen people rise above great adversity, marshal their physical strength and mental toughness, and smile. I have seen women lose beautiful hair (and more of course) and laugh. I have seen vigorous men made weak but still smile and in time regain their vitality. And when the fight against cancer cannot be won, I have seen people die with tremendous dignity, doing it their way, surrounded by love. I have seen their friends and family turn grief into generous acts of volunteering and fund-raising. I have seen people meet these challenges because life is our most precious gift, worth fighting for and worth remembering. As Max Ehrmann wrote in the poem “Desiderata,” “With all its sham, drudgery and broken dreams, / it is still a beautiful world.” Cancer may challenge us, but it cannot destroy our spirit and who we are. This I have learned. I have also come to learn of a special force, which I now call “the power of people.” Although our religious beliefs may differ, one mystical occurrence that I am certain exists for us all is the power of people. When a volunteer gives a cancer patient a cup of coffee and a smile, when one patient calms the fears of another, when women with cancer get together to put on makeup, when a patient says to me, “I am praying for you and your family,” when a boss tells an employee battling cancer, “Take as much time as you need, your job will be here for you,” when a nurse makes a home visit to a patient in the middle of the night to alleviate pain, when the local fire department sends a truck and firefighters to celebrate the birthday of a young boy whose mother is battling cancer, when neighbors drop off meals for months on end to a family in need, when entire religious congregations pray for the health of someone they may not even know, when a thousand cancer survivors walk to celebrate life, everyone is lifted up. The power of people: magical, mystical, real. If you have cancer and feel like withdrawing into a shell, you can do that for a time. Then reach out and make the human connections that will help you heal
