By: E. Loren Buhle, Jr. Ph.D.
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.
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.
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, 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.
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."
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.
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.
"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.
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.
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.
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.
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!).
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."
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.
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.
It is hard to be optimistic about your recovery or to feel good about yourself when, among other things, you are nausated and all your hair has fallen out. It can be especially demoralizing if, after you have returned home, you are still having a lot of days when you don't feel well. Yet, as woman with leukemia said, "I don't have any solid proof of this but, when I make an effort to be optimistic, I seem to feel better and have an easier time coping with treatment."
It is not easy to remain optimistic, particularly on those days when you are feeling absolutely awful, but it is important. It may take some practice. You might have to remind yourself again and again that you are getting better and that, as your treatment continues, you will have many more good days than you do bad days. You might also find that planning special activities for those days when you feel well helps to make the good days better and gives you something to look forward to on those days when you are feeling under the weather.
You might wish to look into techniques such as relaxation or meditation methods designed to focus the mind, alleviate tension and anxiety, and reduce stress. Some people take dancing lessons or exercise classes to improve their concentration or coordination. Other achieve a renewed sense of wholeness and well-being by participating in activities such as judo, karate, and yoga. Still others find that playing a favorite sport or music helps restore their self-confidence and sense of achievement.
Catching up on some long overdue reading, taking a course, or learning a hobby have opened up new areas of interest and growth for many patients. One woman told us that her poetry class "lit a creative fire within me that I never even knew existed," while a man who just started painting said it gave him "a profound experience of peace and contentment."
As a note of caution, try not to confuse "active" with "overactive. Respect you need for rest and relaxation. Exhaustion only weakens our physical and emotional defenses, and fatigue can trigger unnecessary bouts of depression and despair.
Perhaps this is also a good place to mention that people who have a serious illness often have a desire to "put their house in order." Some mistake this reaction as a sign of giving up, but more often, it is simply attending to details of life. From time to time, we all have to review insurance, update wills, clean out closets, and drawers. It can actually be an emotional relief to tie up loose ends and clear out clutter. It makes us feel constructive, accomplished, and allows us to move on -- unencumbered -- into new areas of exploration and growth.
It is a special and rewarding challenge for us all, but particularly for those faced with a life-threatening illness, to discover and remain focused on whom we really are. Time and treatment may return you to good health, but in the long run, it will be the appreciation you have for your own real self, as well as the support of the people who love you, which will restore your sense of serenity and well being.
Any loss of sexual interest or ability resulting from treatment is usually temporary, and normal sexual functioning usually returns after therapy has been completed.
There are other problems that can affect the sexual aspect, and consequently the overall health of relationships. Communication is key to working through these problems. Being honest about your thoughts and feelings is sometimes very difficult, but talking about the issue is the way to get through the problem.
Try to remember who you really are and the reasons your mate finds you appealing. If you are having trouble getting back in touch with some of your special qualities, you might consider counseling as a way of regaining your perspective.
You might be able to view your fears in a future light if, for a moment, you put yourself in your partner's place. Discuss the doubts you have about yourself as well as those involving the security of your relationship with your spouse. You might be surprised to learn your partner is hesitant about initiating physical contact because he or she is afraid of appearing overeager or insensitive. So, it may be up to you to let your partner know when you are ready to engage in sexual intercourse, or desire other forms of physical affection such as hugging, caressing or kissing.
If possible, talk with your spouse about your conflicting feelings so that, together, you can prevent this cycle of misunderstanding from damaging your relationship. Remember that expressions of affection such as touching, kissing and holding are very important to the person who is sick. Reaching out shows your continued interest in your partner as an attractive and physically desireable person. Actions speak to your unconditional acceptance, support and love.
Some couples find the strength and support to overcome the difficulties created by illness. However, cancer can seriously strain a relationship that is already stressed by other problems and, in these instances, counseling might help reopen channels of communication.
When family members are forced to "wear too many hats" at one time, it undermines their physical and emotional health as individuals and consequently, undermines the strength of the family as a unit. As a family, it is important to minimize potential confusion and keep patterns of living and interaction -- within the family as well as with the outside world -- as close to normal as possible. This helps everyone cope with day-to-day stress during treatment and, in the long run, makes it easier to resume functioning as a unit during periods of extended remission or permanent control.
Members of the family, including the patient, can review current responsibilities and activities and determine together those things which are most important to the family as a unit as well as to each individual member. In some instances, you might want to have someone who is more objective, such as another relative or friend, help you sort out the tasks which are necessary from those which can be left undone. You might find you can temporarily relax housekeeping standards or prepare simpler meals.
You might consider getting outside help. Licensed practical nurses can assist with the patient. County and private agencies as well as outreach programs within the community might be able to help with transportation, shopping, cooking, and other housekeeping tasks. You might wish to hire someone to perform outside chores, such as cutting the grass or weeding the garden. The cost of professional services has to be weighed against the physical and emotional price paid by the family, as well as by the patient, when members try to do everything by themselves.
You have the right and obligation to discriminate as best you can between those needs which are immediate and genuine and those which are not -- whether they are yours, those of a family member who is well, or those of the patient. Responding to only the genuine needs of the moment helps alleviate confusion and stress during the treatment phase.
You have the right to get outside help in caring for the patient when you need it. The patient may or may not agree, but even if he or she resists, you can and should feel comfortable about obtaining outside assistance when necessary. Try to not feel guilty about participating in outside interests and activities. If you maintain contact with the rest of the world, it will be easier to continue caring for the patient without any unnecessary feelings of anger or resentment.
Even if the hospitalized and bedridden, a patient can still have input into decisions regarding treatment options, family finances, and the children's schooling. Keep the patient informed. You can share your activities, your dreams, your goals. A patient who is involved with others is more likely not to succumb to the feelings of abandonment which often accompany a serious illness.
Children do need discipline and guidance and, especially during periods of upheaval, the reassurance and support of a loving adult. Perhaps a favorite relative or family friend can take them on a special day trips, help with their homework, and even attend an occasional little league game. This extra time and attention can be a beneficial supplement to your effors to provide security and support.
Some people view survivorship as an opportunity to reassess their lives and make a new start. One man, previously a mortician, decided he would be happier helping people who were still alive and switched his career to hospital administration. A remarkable eighty-year-old woman, treated on and off for leukemia for the past twelve years, began helping out in the kitchen of the local senior citizens' center. Today, she supervises the kitchen staff, organizes special trips and says, "I meet so many people and feel so involved with life now. I'm busy and happy and, best of all, I don't have too much time to worry about myself."
People often find, even during periods of outpatient treatment, that by helping others they also help themselves. Many become hospital volunteers, active members of church and community groups, or involved in support groups for others coping with cancer.
Many people offering assistance are not just trying to be polite. They are seeking direction. They are asking for a concrete way to let you know they will not desert you and are grateful to have something to do to show their continuing friendship. So, why not give them something to do? If you can give them a specific chore, it takes one thing off your hands, and you've done them a favor as well.
New friends and relatives will usually wait for you to indicate how to proceed. This point is particularly important if you have trouble reaching out to others. Asking for assistance is really a way of making friends and relatives feel useful and important in your life.
It is difficult to direct your energies toward helping other people when yo feel as if you own life is stressed to the breaking point. Still, if you can provide others with a little guidance as to the role they can play in your life now, the rewards can be those of continuing friendships based on mutual concern and support.
An open conversation might help to dissolve their fears, ease their discomfort and possibly provide them with a renewed opportunity to participate in a more active form of friendship and support.
"Of course, I'd never recommend getting cancer as a way to broaden your social sphere, but I actually have more friends now than before I got sick. I've met a lot of wonderful people in support groups with whom I share other interests and activities."
Like so many others, fellow employees or students don't know what to say and are trying to protect your feelings or their own. In time, most people will become relaxed in their presence. If you can remain patient, open and forthright about your condition, you may be able to clear up many of the misunderstandings co-workers and classmates have about your illness.
"Work was very important to me. I wasn't about to give up my job because other people reacted negatively to my illness and appearance. Things are a lot less tense since I've shown that I can stay the course. I look better, but the people I work with also understand more about my illness now, and our interactions are beginning to be more natural."If you return to work or school after your treatment has been completed, chances are you will look well and function quite normally, and you might find that other tend to underestimate the seriousness of your condition. Many people take an "it never happened" approach. They may greet your return with, "Gee, don't you look great? Glad you're back", as if you were on an extended vacation at a tropical resort. Acutally,there are some who appreciate a nonchalant attitude toward their illness, but it can be demoralizing when those at work or school don't even ask how you feel.
Some employers are supportive, but many are not. Outright dismissal is rare, but many companies do practice subtler forms of on-the-job discriminiation, ranging from demotion or denial of advancement to forcing a patient to surrender group health insurance in order to keep his or her job. Sometimes a patient may be gradually forced out of their job because management decides they have "no future" and quietly eliminates them from long-term plans. Employers have been known to show patients excessive consideration, followed by unwarranted reductions in their workload, until they are finally persuaded to leave for the sake of their health.
The most blatant form of discrimination occurs when people apply for a new job or entry into school. Many companies and professional schools and the military routinely reject those with a history of cancer. Rejection is usually based on the rationale that people with similar medical histories take too many sick days, are poor insurance risks, or make co-workers or classmates uncomfortable. While there are numerous studies showing the absentee and turn-over rates of people with cancer are the same as other employeees, employers and school administrators remain overly pessimistic and caustious about accepting survivors.
It is not surprising that many people try to conceal their illness for fear of losing their job or insurance, or the reactions of prospective employers or institutions of higher learning. Most people feel it is usually too difficult, and too stressful, for patients to hide the fact they are undergoing treatment. Once treatment has been completed, survivors have different opinions about whether or not to make a full medical disclosure when apply to a new company or school.
Some agree with sentiments of this former lymphoma patient, "I've tried it both ways and, at this point, I'd be afraid to ever tell a potential employer. I haven't told the company I work for now, and I don't intend to."
Others feel just the opposite. As one woman said, "For me, telling was easier than hiding information. I got everything out in the open right away. Then I didn't have to worry about a previous employer or reference inadvertantly letting something slip, or whether a physical examination would be required, or how I would approach my boss if I ever had a relapse."
There are no easy answers to the questions of whether, when and how much information to divulge about your illness. Disclosure is an individual issue, but you should be aware that "lying" or omitting information on an application or during an interview can have ramifications, one of which might be immediate dismissal. It is therefore adviseable to get the advise of a professional employment counselor as well as a laywer before you decide what approach to take toward this issue. This is discussed in the Americans with Disabilities Act.
Employees covered under a group policy carried by their employer may have trouble qualifying for a new group policy if they change their job, unless a new employer does not require listing a medical history. Most insurance companies, will allow employees who are leaving to convert their group plan to a private plan. This typically is at much higher cost and with limited coverage. The federal (USA) policy of COBRA also allows 18 months of insurance policy after leaving (or being terminated) at a job.
Even people with adequate insurance for most illnesses may find a substantial portion of the expenses incurred during treatment for cancer are not covered by many major medical policies. The high cost of health care, combined with limited coverage, often makes it necessary for patients to purchase additional insurance.
As a special note, parents of teenagers or young adults with cancer might wish to begin exploring alternate forms of coverage before they reach the age when they are no longer covered by a family or school policy.
While survival percentages and averages are important, it is even more important to recognize the individuality of each case. Each of us has our own genes, our own immune system, our own urge to fight, and our own will to live. These are characteristics which surpass analysis. There are many people living disease-free today, who, according to the charts and statistics, should not be alive at all. Year after year, they continue to defy poor prognoses and negative statistics.
Even if the outlook for recovery becomes particularly guarded, there may be a new treatment and another remission . . . and those intangible gifts life unconditionally bestows upon us all. There are still experiences to be shared, more sunrises and sunsets, more good days and easy nights.
"As I was getting into my car the other day, I was thinking about how much my life had changed over the last couple of years. Two years ago, I was in the middle of treatment for cancer, and I felt so scik I really thought I was going to die. Now I have so much to look forward to. I'll finally be graduating from medication school soon. My wife and I are expecting our first baby. Then I suddenly thought, 'Oh God: What if it comes back?' I really got scared for a minute. So, I had to tell myself again, 'Maybe it will. But it's not here now. Just start the car. And be grateful for this day.' It has been almost two years since my last treatment, but that kind of thing still happens alot to me."No one ever forgets that they, or someone they love, once had cancer. Treatment ends, but anxiety can linger.
"I had beaten leukemia. I was totally estatic," said one man describing his last chemotherapy session, "for about a day and a half." "Then", he continued, "I began to think that maybe treatment wasn't really so bad. I mean at least I was constantly monitored. How would I know if my bone marrow was secretly starting to go haywire again? Of course, I couldn't know. I still don't know but, as time passes, I wonder less and less about it."Initially, a cold or the flu -- even a bad cramp -- can cause panic. Another patient said:
"For the first time or so after treatment, I kept running back to my doctor every time I got a cold, begging for a bone marrow aspiration. I hate bone marrow tests, and if you've ever had one, you know its not something you beg to have done. But, I would get a little crazy because I wsas so afraid my leukemia had returned. Thankfully, my doctor never complied with my wishes, but instead sent me home with instructions to take aspirin and drink plenty of fluids."Follow-up appointments, such as a six-month or annual checkups, might also be times when fear and anxiety overshadow hope and joy. Many find it upsetting to return to their physician's office or treatment center -- places filled with reminders of the most frightening aspects of illness -- and some people actually experience physical symptoms similar to those experienced during treatment. These reactions are usually milder in nature, however, and generally pass quickly.
Even the approach of those magical five and ten-year milestones might make you feel more anxious than secure. There will be other times, too. Moments -- unrequested and unwelcomed -- when you will suddenly remember and, once again, feel as if your whole life is hanging by a single thread. These are feelings known to everyone who has been touched by cancer, but moments of fear and anxiety grow further and further apart as you continue to focus on thoughts and activities other than those involving your illness. Time does help!