This information is directed to those affected by cancer. It is for you, a member of your family, or someone very close to you. Many people, including physicians, equate a diagnosis of cancer with a certain death sentence. While this may have been true twenty-five years ago, it simply is not true today. While cancer is a life-threatening illness, it is no longer necessarily or imminently fatal. Survival rates for many cancers have risen dramatically in the last twenty-five years.
Today, many patients go into remission, a state where there is either no evidence or symptoms of disease. After five years of remission, many patients are considered cured. The chances are excellent that they will continue to live, grow old and die in much the same way as they would before their diagnosis. Others will live normally for many more years in little to no discomfort, their illness remaining dormant or controlled through treatment. Year after year, the number of long-term survivors continues to increase.
It is difficult not to focus on dying. It is not unusual to contemplate death when you are confronted with a disease that may rob you of your life. Yet, the reality is that many people will be living for some time, and survival brings with it a whole new set of concerns that cannot be treated by chemotherapy, radiation or surgery.
The purpose of this message is to examine the stresses shared by those with a serious illness. I shall look at some of the emotions and issues commonly arising during each phase of serious illness, from before diagnosis, through life after recovery.
No two people with cancer are exactly alike, nor are their experiences identical. Still, people in similar experiences and feelings. Although each person must deal with illness in an individual way, it can sometimes be useful to see how others have managed to cope with their circumstances. One man explained that he and his family view the experiences of other people as "an emotional road map which helps us avoid 'one-way' thinking and 'dead end' arguments." A woman with cancer finds that by talking with others who are coping with a similar illness, she can "sort everything out and put things back into some kind of perspective. It helps me feel less like a victim, more in control . . . not so alone."
The goal of this message is to serve as a guide to help you explore your own issues and emotions. Some of the material presented may be irrelevant to you and your circumstances. My hope is that by seeing how others deal with their disease, you may feel less alone and can begin to to find your own ways of coping with survival.
Still, when most people hear the words cancer, they respond with shock, fear, and disbelief. They react openly, vehemently refuting all facts, and may even become angry with their physician. Some listen attentively, perhaps nodding as if in aggreement, while they are secretly rejecting everything that's being said. Others hear words that just don't sink in. Some simply accept what they hear.
These initial responses are all normal. The mind has a capacity to absorb only as much information as we are ready to accept. These reactions protect us from the overwhelming anxiety which could result from the the full impact of such devastating news. They serve as natural control valves to allow us to continue to function as we slowly absorb the information about our illness and its treatment. This is why denial of the event can serve a healthy purpose, for a time.
Adjusting to the Diagnosis
The human spirit is remarkably
resilient, adjusting to even seemingly unbearable situations, and most people,
each in his or her own time, gradually come to accept the reality of cancer.
The period immediately following the diagnosis is one of intense inner confusion and conflict. It is important to remember to consider your own needs. You have the right to digest information and sort through your emotions at your own pace, as well as determine when you are ready to talk and how much you are ready to discuss. This may be at a different pace than other family members.
A frequent question to arise is whether or not to tell other people. Sometimes, people are reluctant to tell anyone and may even withdraw from family and friends at this time. They may be too embarrassed, feel that those closest to them might not be able to cope with the situation, may not want to burden others, or think that their illness is something they have to handle by themselves.
As you consider the question of sharing the diagnosis, it might be helpful to remember that dealing with an illness of this nature can be more frightening and lonely than anything most people will ever have to experience. There are too many times when, regardless of your support, you will feel totally without ally or comfort. There is no need to increase these moments by trying to "go it" alone.
Whom Should I Tell?
The majority of people
find, in the long run, it is best to be honest with close friends and relatives.
Trying to conceal the diagnosis from those who are closest to you often turns
out to be exhausting and futile. They can sense when something is troubling you
even before they know the facts, and they usually find out sooner or later that
you have a serious illness.
Confiding in family and friends gives them the opportunity to offer their support and also encourages an open exchange of feelings which, under other circumstances, none of you might have ever expressed.
If you have limited family, the burden might seem lighter when you share the diagnosis with a few close friends. You may find that one or two will be unable to deal with your illness, but you may also find that the least likely of companions has a yet untapped reservoir of loyalty, strength and compassion.
Some people find themselves at a time in life when they are without close family or friends when illness strikes. If this is true for you, you might think about joining a mutual support group with others who are coping with a similar disease. These groups can be an excellent source of solace, understanding, and companionship for those who find themselves totally alone. Even people with good support may find these groups very helpful. The topic of support groups will be discussed later.
Should you inform your employer about your illness? Honesty is probably your best policy. Your initial treatment may require hospitalization and subsequent outpatient treatments, thus spending several hours or more away from your work.
We are often very close to the people we work with every day. They will know something is wrong. Some may even have to assume additional responsibility in your absence. You may wish to share the diagnosis with some of your co-workers. As with family and friends, a few will make themselves scarce, while others may surprise you with a wealth of strength and support.
Children Know When Something
is Wrong
Most parents will do almost
anything to protect their children from pain. From an adult perspective, there
are few things more painful than dealing with a life-threatening illness. However,
most people who have tried to shield their children from knowing that a parent
is seriously ill often regret later they did not tell the truth.
Children, especially young children, tend to see themselves as both the center and the cause of their own little universe. They know when something is wrong with their world, and usually take on a tremendous amount of responsibility for it, believing it is their fault. They will feel the stress within the family and without the knowledge of what is wrong, have more anxiety than if told. Indeed their fantasies may portray outcome more lurid than any realistic outcomes!
The parent who is ill may want to be the one to tell the children, or if it is more comfortable, the other parent or a trusted relative or friend can talk about it. The person who tells them should have enough information to answer their questions honestly and directly. Your approach should certainly not be overly pessimistic, but children should also not be given too much of a sense of false hope.
While you may be able to tell older children the name and a brief description of the illness, the explanation should be kept as simple as possible for younger children.
"I've been sick alot lately, haven't I? The doctors think they can make me well if I go to the hospital. It is far away so Mommy's going to keep me company. Aunt Marie will take care of you while we are gone. We're sorry we can't be with you, but we still love you very much, and Mommy will call you whenever she can."
It is usually helpful to say the word cancer, as they will probably hear it used by others. It can also give them a word to be mad at, if they are angry. While a much weaker statment, you might try the tact:
"Mommy is very sick. We think she is going to be okay, but her treatments sometimes make her grouchy and sad. It's not your fault, but she can't spend as much time with you as she wants to right now. It is hard on all of us and we all have to try to be a little bit patient with her."
Children have amazing resources and capabilities when they understand a situation. Perhaps by being truthful with them, we can help to lessen some of the confusion they might experience.
Remember: children want reassurance they did not cause the illness. They need to feel secure that someone will be there to care for them.
When the Patient Is Not
the First to Know
Sometimes the family members
or close friends are the first to hear the diagnosis and must then decide whether
to tell the patient. If you find yourself in this position, you are already aware
this can be a complex and agonizing decision. In most instances, people with cancer
agree they are better off knowing the whole truth about their illness.
We all have important decisions and choices to make during the course of our lifetime and, for many, these choices are never clearer than when they are confronted by circumstances of potentially shortening our expected life span. Cancer has an enormous ablity to bring focus to both the life of the patient and the lives of those around the patient. What really is important in life? Yesterday's frustrations fade away when we consider our mortality. While thinking in terms of a future bounded by so many weeks, months or years to live, most patients feel they have a right to know about the diagnosis and treatment options so they can decide how the "live" the remainder of their lives.
In addition, as survivorship rates continue to increase, not telling a patient may require the family and friends to keep their "secret" for many years. Realistically, the procedures involved in diagnosing and treating cancer often make it extremely difficult to shield people from the nature of their illness for very long.
Most people eventually figure out the truth, and if they have not been given adequate information about the diagnosis, they can imagine their illness is much more severe and less treatable than it actually is. They may feel no one is being honest with them because there is no hope and they are going to die soon. Some patients even think their family and friends cannot accept the reality of their illness, so they must "spare" the very people who are trying to "protect" them.
Dealing honestly with illness eliminates the need for false pretenses, often opening up a rewarding exchange of comfort and support patients and families alike. One woman whose aunt died recently from complications related to leukemia shared an experience common to families:
"My cousins decided not to tell my aunt that she had leukemia. They felt it was best for her, but it actually made it very difficult for everyone, including my aunt. Our family was always very close, but we were never into reminiscing or expressing our feelings for one another. My aunt was the oldest, someone with whom we shared a lifetime of experiences, and suddenly is seemed as if so much would be left unsaid.""My cousins did eventually talk with her about the severity of her illness and, as it turned out, she suspected it all along. Once everything was out in the open, it became a lot easier for everyone."
Finding the Best Time to
Talk
Coping together lessens
the burden and loneliness of a serious illness. Still, even though we may be part
of the same family or have been friends for years, we all may not be able to discuss
our feelings at exactly the same moment. Cancer strikes each person in a powerful
-- yet individual -- way. While we should encourage the open expression of thoughts
and emotions, no one should feel obliged to talk before he or she is ready to
talk.
This stressful period of adjustment will perhaps be a little easier if you remember it is a difficult time for everyone. We can help and support each other by trying to remain sensitive to each person's emotional needs and capabilities.
At the same time, however, the people around you also have cares and concerns. You might try saying, "I know you are concerned and we definitely do have to talk, but I'm not ready yet." This type of response validates the other person's need, confirms a future conversation, and still allows you additional time.
You may notice, as the diagnosis becomes more real for you, your original feeling of shock and disbelief gradually turn into anger and depression. You might have trouble sleeping, eating and concentrating. You may feel anxious and irritable, possibly even persecuted, wondering: "Why does it have to be me?" This is a natural response during this period.
The frustrating aspects of a life-threatening illness provide for the release of emotions, and you may find yourself overreacting to simple misunderstandings or lashing out unexpectedly at family members and friends. Actually, it's fairly common at this stage to resent people who are well. You may even be using them to focus your anger and confusion.
Perhaps you assume that because people are close to you, they will accept and endure your wrath. Perhaps they will, but don't be surprised if they lash right back at you, expressing their own anger and frustration.
Family members and friends are also going through a lot now. They may be afraid of losing you. They may be apprehensive about taking over additional responsibilities. And they, too, feel powerless. So while you may occasionally need to unleash your pent-up emotions, it's also important to recognize others may need the same release.
This period is truly one of adjustment and acceptance. Arguments, and even emotional outbursts, can be a valuable part of this process if we use them to strengthen our communication with each other. For example, after things settle down, you might try explaining your anger and frustration with the people involved. Sharing your feelings in this way might initiate the type of dialogue through which everyone can begin to express their feelings in a more honest and direct manner.
If You Are a Family Member
or Friend
Obviously, this is a difficult
time for you, the family member or friend, as you try to maintain a balance between
fulfilling your own needs and those of the person who is sick.
Family members and friends are often ready to discuss their feelings before the person who is ill. While you can express willingness and desire to have a conversation, it is important to let the person with cancer decide when you will actually sit down and talk. It can be frustrating, but sometimes you have no choice but to wait until the other person is able to discuss his or her feelings.
In the meantime, he or she might be directing a lot of anger your way. Remembering that you are the target, rather than the cause, of this hostilities might help you to be a patient during these outbursts of frustration and resentment.
Family members and friends may try to combat despondency by insisting that "everything will be all right." But at the moment, everything is "not all right" and by denying this reality, you may actually abort the person's attempts to express his or her feelings. Instead of trying to lift someone's spirit with false cheer, you might try sharing some of your own emotions. Knowing that you have some of the same fears and anxieties about the future may make it easier for the other person to express his or her feelings.
Everyone wants to be a loving family member or friend, but people are often not quite sure what "to do" or how "to act" around those with a life-threatening illness. Perhaps the best thing for you "to do" is to be yourself. Once the treatment begins, there will be a number of opportunities to offer your assistance and support.
Some People Just Can't
Some family members and
friends, perhaps even all of them, may deny the reality of cancer. Or, while they
may accept it, may refuse to discuss it. We all know people who have never learned
to communicate their feelings and, in all probability, they are not going to do
a complete turnabout now. Still, if you as a patient need to express your feelings
and sort out your emotions, it is time to turn to one of the several support services
listed here. A social worker or pyschologist may be helpful to get you started.
"I'm one of those patients who likes to know everything and, in the beginning, I just assumed he would tell me all there was to know. He did talk to me but, for some reason, didn't always give me all the pieces to the puzzle. Finally, I just started asking a lot of more questions, and he started giving me a lot more answers."
"I couldn't believe it. There I was waiting for him to tell me more, and there he was waiting for me to let him know how much more to tell."
Although your regular doctor may continue to be your personal physician, most often, he or she will termporarily turn the reins over to an oncologist or hematologist for active treatment. In many instances, a whole treatment team will be assigned to your case -- which might include nurses, radiation technicians, a surgeon, a social worker and a psychologist or psychiatrist -- but it is the oncologist or hematologist who is responsible for your health.
In all probability, once your physician has given you a confirmed diagnosis, it will be up to you to initiate further discussions about your illness. It's true, your doctor will look for clues from you, but he or she is not a mind reader. You have to let your physician know how much you want to know.
Some people want to know everything right away. Some ask a few questions at a time, digest the answers, and then come back with more questions. Some never ask anything and, in this case, a family member or close friend should speak with the doctor about the extent and future outlook of the patient's disease.
In any event, regardless of when and how you do it, it's important to let your physician know that you are ready to talk more about your illness and its treatment.
Asking Important Questions
When most people a receive
a diagnosis of cancer, they are completely shocked and stunned. It is only natural,
then, to be confused about what happened during your first meeting with your doctor.
As a patient, you have the right to know as much as you want to about your illness, and you have the right to ask questions until you understand the answers. We know you want to be a "good" patient or "cooperative" family member, but in the long run, both you and your doctor will benefit if you are well-informed and assertive.
It is important to ask your physician about everything you don't remember or understand, even if it means reviewing everything he or she told you all over again. Don't be afraid to "appear stupid" or to "take up too much of your doctor's valuable time." Yes, your physician is busy, but this is your body. This is your life!
It might help to prepare a list of questions and, prior to your appointment, alert your doctor or his or her receptionist that you will need extra time. It is also a good idea to take notes, use a tape recorder, or bring a clear-thinking relative or friend rather than trying to commit the information to your own memory.
In addition to asking specific questions about the diagnosis and treatment, it is also perfectly acceptable to ask your physician to recommend other doctors if you wish to get a second opinion.
Changing Doctors
In this age of consumerism,
physicians have become increasingly aware of the importance of recognizing and
responding to the feelings of people with life-threatening illnesses. It is easier
to fight cancer when the doctor and patient work as a team. A physician depends
upon the feedback of his or her patient, from the diagnosis through completion
of treatment, and it is helpful if the two develop a relationship based on mutual
trust and open communication.
There are some physicians, however, who have never learned to speak comfortably with seriously ill patients or the patient's supporters. Some of these doctors may seem abrupt and aloof, when they are actually very dedicated, caring, and extremely well qualified people.
If you are having trouble communicating with your physician, it is only fair to let your doctor know that you would like to see someone else. Don't be embarrassed. Your physician should want what is best for you, and is probably also aware that the proper relationship was not established. A decision to change physicians should be based on a realistic assessment of your condition rather than an impossible quest to find someone who will magically alleviate all your fears by promising a miracle cure.
When you consider the question of switching doctors, it is important to recognize that a doctor who advises that your prognosis is poor but still uses all available means to treat your illness and to keep you comfortable and functioning for as long as possible is not forsaking you.
Also, if your family physician has not yet sent you to a specialist or is one of the few who still believe "nothing can be done", ask for a referral, contact your local chapter of the American Cancer Society, local chapter of the Leukemia Society, or the information in Oncolink for more information regarding treatment in your area.
"When I think about treatment, I think mostly about the changes. Chemotherapy changed the way I looked, the way I felt, and the way I thought. I perceived and reacted to people and situations very differently than I normally would, sometimes very differently that I had just an hour or two earlier. And treatment didn't just affect me personally. It affected every area of my life." "I was in the hospital for a long time so my family life, my career, and my social activities were all completely disrupted. As I started feeling better, all I could think about was going home and continuing life 'as usual'."There are many types of cancer and each patient's treatment program is determined by the individual form and course taken by his or her illness. Generally, treatment begins immediately. It is usually aggressive and involves chemotherapy, radiation, surgery, or any combination of these three methods."I was totally unprepared to find that carrying on 'as usual' would not be nearly as easy as I anticipated. Life was really not the same now as it was before I got sick. I'm living with cancernow . . ."
Some people can be treated on an outpatient basis, but most are hospitalized for one or more extended periods of intensive treatment, followed by a period of maintenance therapy during which they are required to make regular visits to their physician's office or clinic.
Unorthodox Treatment
Between the time you receive
the diagnosis and the completion of your treatment, you will probably hear about
one or more unproven methods of treating cancer. Too often, patients are afraid
to ask their physician about unorthodox treatment methods. However, this topic
is really too important to your well-being to prevent you from discussing it with
your doctor or health care professional. If you are uncomfortable about bringing
up the subject, you might try saying: "You know, I've been hearing alot about
such-and-such treatment for my cancer. Can you tell me more about it, and why
it isn't accepted by most medical doctors? Why do some think it works and other
think it doesn't?"
Using this approach, you have not attacked the treatment you are getting or the professionals administering it. You have only asked for information. Check the theory behind any treatment plan with your physician or another medical specialist in the field of cancer before agreeing to any treatment.
Adjunctive Treatment
There are other thing
that may help you with your treatment, such as dietary changes, exercise, stress-reduction
techniques, mental or spiritual imagery, etc. For more information, your physician
may be of some help. This area will be covered in some detail on OncoLink shortly
(i.e. stay tuned!).
Coping with Side Effects
Despite the advances made
in medical science during the last twenty years, side effects remain an unavoidable
consequence of most treatment programs. They include a broad range of physicial
and emotional reactions, running the gamut from mild to severe. Some side effects
appear during or immediately following treatment and some may not manifest until
years after chemotherapy or radiation have been completed.
Reactions, and their intensity, can vary considerably from treatment program to treatment program, as well as from individual to individual. For example, one patient being treated for Hodgkin's disease couldn't remember a day when he felt "normal", while another patient undergoing similar treatment for a comparable period said: "I think I've had a pretty easy time of it."
Sources of Information
The best source of information
about side effects is your doctor. Your doctor is the most knowledgeable about
your particular case, and, therefore, the most qualified to discuss your treatment
program. You should not hestitate to talk to with your physician about any questions
or fears you may have regarding your treatment and possible reactions to it. Please
don't forget: your physician can't help you with your side-effects if you
don't report the symptoms.
Other health care professionals, such as a nurse or technician responsible for administering your treatment, can also supply you with assistance and information. You may also wish to read some literature describing the side effects associated with your treatment program. Material of this nature is usually available from your doctor's office, treatment center, and here on Oncolink.
Many people also find that support groups provide an excellent forum for the exchange of experiences and information about side effects and how to cope with them.
General Reactions to Treatment
There are too many individual
treatment programs, and consequently too many variations of side effects, to include
everything in this article. This article will discuss the most common side effects
(specific reactions will be covered elsewhere on Oncolink).
The most common side effects include nausea and vomiting, hair loss, changes in your skin and mucus membranes, and mood swings. These reactions can be unpleasant, but they are usually temporary. They are most exaggerated during periods of aggressive treatment and subside completely, or come and go, during maintenance therapy. In certain instances, the intensity of these side effects can be controlled by modifications in treatment and/or diet, as well as by medications prescribed by your physician.
While some chemotherapy drugs limit hair loss, many patients undergoing aggressive treatment still lose a good portion or all of their hair. Regrowth normally begins after initial therapy has been completed, and the hair may come back even thicker than it was originally! No one looks forward to the prospect of losing his or her hair, but if this possibility is particularly disturbing to you, it might help if you have your hair cut short and practice wearing scarves, or a hairpiece or wig, before your hair actually begins to fall out. Many patients find this type of preparation makes it a little easier to adjust to this change in appearance. Your chemotherapy nurse can be quite helpful with questions about your hair.
There is no doubt that treatment affects the central nervous system, making you experience emotional highs and lows. Mood swings are generally not severe enough to require medication, and most patients report that prior knowledge and understanding of this side effect helps them to weather these emotional ups and downs. You may want to tell family members and friends that your moods are "subject to change," to prevent possible conflicts and misunderstanding with other people. In some cases, short term medication may be indicated if depression or anxiety becomes too severe for too long.
Fatigue, too, is a common complaint among patients. Most people learn to combat fatigue by maintaining a balanced diet, setting priorities, and adjusting their daily schedule to ensure they get adequate rest until their normal energy level returns.
Both men and women may experience some sexual difficulties during and after treatment. These difficulties can include impotence, lack of sexual desire, and sterility or infertility. Women may develop menstrual irregularities as well as other symptoms of early menopause such as hot flashes, insomnia, increased vaginall dryness and increased irritability.
Hormone replacement therapy may reverse the process of early menopause or alleviate its symptoms. Replacing hormones lost during treatment also reduces the possibility of heart disease and osteoporosis which might otherwise result from premature menopause.
Patients should be aware that certain treatments may result in permanent sterility and should discuss this with their physician. Couples falling into this category might wish to consider adoption. Men should discuss the possibility of sperm banking with their doctor. There is currently no reported case of ovum cryopreservation -- freezing and storing a women's eggs -- but there have been some successes with preserving pre-treatment sperm samples for artificial insemination at a later date. Consult your physician.