Life's Journey Through Cancer Territory
By Becky Bush RN, MS, OCN
Oncology Certified Nurse, Hospice Nurse
Written January 1999 (copyrighted)

Cancer is the great equalizer. It finds the rich, the poor; the brave, the frightened, the very young, the old. Ready or not it finds us, or those we love. There are very few of us who don't, at some point in the experience, think about dying; for we know (unlike those who do not have cancer) that we now we shall surely die. The diagnosis of cancer scares us like that.

The cancer experience starts with whatever it takes us to get the check up, that leads to the tests, that makes the doctor deliver the news: That we will now have to include cancer in our life's journey. What will this journey be like and where will it take us?

The map of the cancer experience looks like this: The initial diagnosis; the decision to treat or not treat based on more tests which are needed to "stage" or determine how much of the cancer has spread in the body; the prognosis (an educated guess at how things will turn out); a discussion about the possible treatments: Surgery, chemotherapy, radiation, bone marrow transplants and biotherapy; treating or avoiding the side-effects of the treatment; and re-evaluating the disease at the end of the treatment.

At this point the road forks. Some will take the "think we have gotten it all" road. Some will need to continue on the treatment road. Some will decide to stop without further treatment. Others will come up against the road block of "no known further treatment" and will be frustrated and angry.

For some the journey through cancer territory will be brief, for others it will be long. Some will leave this cancer experience only when their body tires of the fight and lets them leave altogether(die). Some will hear the word cured and will live without ever needing to come back to this land. Some will leave only to return at another time maybe from the same type of cancer, maybe from another type. The map has many roads and side roads. It is clear that whichever road is taken, the journey is very full of strong emotions.

There are as many cancer journeys as there are people with cancer. Each experience is as unique as the person on the journey. There are two reasons for this.

The first reason is that all cancers are not equal. In fact the word cancer is used to describe a condition in which there is an abnormal growth of what started out to be normal cells. The cancer cells then create more cancer cells.

This is a situation which might be thought of as a car factory speeds up production producing too many incomplete cars, cars with only three tires. These useless cars crowd the roadways, preventing normal traffic patterns. Some will reproduce even more useless cars. Soon the traffic jam causes all sorts of unhappiness and transportation related problems. Cancer cells are like that.

The way this overgrowth of cancer cells affects the body is determined by several factors: the speed of their growth, where they start, the likelihood they will migrate to other parts of the body, and the function of the cells from which these cancerous cells originated. For example, a cell which started out as a breast tissue cell before it went "haywire" will act differently than a cell which started out in the bone marrow as a cell that fights infection. They are both called cancer but the cancer experience will be different. These two cancer illnesses will be treated differently.

The other key ingredient in the cancer experience is the person who has the cancer, and the situation they find themselves in at the time of the diagnosis. Each individual has a unique physical, mental, emotional, spiritual, life experience make up. Each individual has a unique family environment. Some families can provide a healthy support system and some cannot. It is important to remember that we do not stop being who we are just because we have a cancer diagnosis.

Most of us prepare a little before we start a trip and this journey is no different. First pack a reliable supply of hope. Next find out as much as you can. This will help you feel more in control. Remember if you are the one with cancer this is your journey. It is your body and you should have the final word in what happens. If you do not understand why, ask. Ask what and when and what other options do I have? Ask how much time do I have to make a decision. Talk to an oncologist. Ask how they get their information, make their treatment decisions. If you don't understand the answer, ask again or ask to speak with someone who can explain the answer in a way that you can understand. Ask for information written in a way you can understand it.

The beginning is a good time to list all the positive things we feel about ourselves. It is a good list to have in times of need. Now is a good time to remember other times we faced trouble and how we made it through. Remember what kind of help made it easier then. Would it help now?

When looking for helpful information make sure you are getting accurate information from reliable sources. There are unfortunately people eager to take your money for miracle cures and miracle treatments which may not help at all. Ask to see the research and the side effects from anything that sounds appealing. Also be warned that there is both good and bad information on the Internet.

You should find information at your Cancer Center and at the public library.

Other sources:

The American Cancer Association has booklets on the various types of cancer, they have a local chapter and are on line (http://www.acnm.org/).

The National Cancer Institute, part of the National Institutes of Health (http://www.nih.gov/) has a public education phone line 1-800-4Center.

The National Center for Complimentary and Alternative Medicine is a division of NCI Tel 1-8888-644-6226.

In addition to the formal kinds of information, there are people who are presently going through the treatment that your doctor may be suggesting for you. They are volunteers who have walked some of your journey and are willing to share what they have learned as they lived it. They may be reached through such support groups as "One on One." Your cancer nurse will be able to help you locate these and other support groups.

Often the cancer or the treatments alters how we look and how we feel about ourselves. Studies have shown that our thoughts about ourselves, our self image, influences our sense of well being. For example hair loss sometimes makes us feel different, no longer lovable. The American Cancer Society's "Look Good, Feel Better Program" provides people trained to help with wigs for women and men. Be prepared. Ask if any of your treatments well make you lose your hair and when this might happen. My mother had hair Friday night and was bald by Sunday morning!

Surgery can alter our bodies, changing looks and function. This can interfere with how we relate to our personal partners. Find someone in the health care system to ask about these issues and know that others have coped. Find positive ways around the loss of body parts, for example breast prostheses, and around loss of body function, for example loss of sexual function. If intimacy was important before cancer let it still be as important as is comfortable.

If someone suggests that the mind can help heal the body they are right to a point. The mind can offer the suggestion that health is possible. Only the body knows if that possibility is real.

Coping with the many stresses and strains of this new unfamiliar journey can cause a lack of humor. How can one be merry in the face of all this? And yet, we know that humor helps us feel good, feel human. Research suggests that humor may even boost the immune system. The immune system can be weakened during chemotherapy and some radiation therapy. The American Association for Therapeutic Humor might help (http://www.ideanurse.com/aath/). Renting a favorite comedy might offer brief respite, a welcomed rest stop on the journey.

Fatigue may be an annoying companion on the cancer journey. The cancer, or the treatment, or feelings of being out of control may cause the fatigue. The Oncology Nursing Society recently studied this very real and troubling symptom. They concluded that mild exercise actually helps overcome some of the fatigue. Ask your doctor. Then find a pleasant place and way to move your body. Movement enhances feelings of independence and well being.

Pain is of great concern to those with cancer. It should not be accepted as a normal part of having cancer or even dying with cancer. The medical world has many good ways of treating cancer pain. Pain severely alters the quality of life and should be treated aggressively. You cannot feel good if everything hurts. Ask for something different, something more, something better. Chronic pain can cause fatigue and depression. Do not suffer in silence. Do not suffer if you can help it.

I've had cancer patients who were within months of dying tell me they never felt better; except for dying of cancer of course. When I asked them to tell me about it, they said that their diagnosis had been a wake up call. They changed their lives because of it and found that they really liked life. The cancer motivated them to streamline their lives. They no longer spent time on people or activities that were meaningless to them.

With only so much energy, they used it on important things. The house work became less important than reading with the kids. The trip to the ocean was planned and done. They watched more sunsets, listened to more music, had their first massage. They read more books about the meaning of life and death. They wrote their will. They created little memories every day. They "cried and laughed openly with their family after a time, and that felt good." They lived in the present. They kept hope alive.

My mother dies four years after she was diagnosed with ovarian cancer. They said she had two weeks to two months to live. As she signed herself out of the hospital early she said, "I'd rather not have cancer but I do. And if I don't have much time, I'm going to spend it doing the things I want to do....I don't intend to be dead until I die."

Thankfully I do not live in cancer territory, but I have worked there - gladly for many years. It is a complicated place. Huge loss and gains are found there. There are storms of anger and despair. There are lovely flowers of human kindness. There are wonderful rainbows made from colors of hope, of spirituality, of human strengths and even humor. The people there, have taught me that "healing" comes in many forms. They have taught me the importance of hope