What you can and should do when your partner has cancer depends on your partner’s personal needs.
Each situation is different. Your partner may be newly diagnosed, dealing with metastatic cancer, or living in a kind of limbo, not knowing whether the cancer has regressed. Here are some general guidelines that could help you provide the kind of support your partner needs:
Face Cancer Together
Although your spouse has cancer, the illness is really happening to both of you. Your life is being disrupted in many of the same ways. You are sharing many of the same emotions and concerns.
You are both challenged to find constructive ways of dealing with the disruptions and threats posed by cancer and with the side effects of medical treatments. It can be tremendously reassuring and comforting to your loved one to know that the two of you are facing the illness together and that your support and involvement will be steadfast and unwavering regardless of what happens. Here are some of the specific issues that you should try to face together:
- How serious is the cancer?
- What is the best treatment, and what are the pros and cons of different options?
- Are there clinical trials to consider, or perhaps complementary or holistic approaches?
- What roles or division of labor should we take in learning about these matters?
- What should we tell our children, and how can we best help them in dealing with this frightening situation?
- What changes do we need to make in our daily routine to accommodate the need for treatments and to deal with side effects?
- What does our family need in the way of support and practical help from relatives, friends, and our religious community?
- How can we best reach out for the support we need?
Discussion Is Better than Assumption
Do not assume that you know what your spouse is thinking or feeling about the cancer, or that you know what he or she needs from you. You might think your spouse is mostly scared, when actually he or she feels more sad or perhaps guilty about the consequences of the cancer for you. You might think that your spouse is strong and resilient, when actually he or she feels vulnerable and dependent on you, but may not want to let you know that. You might think that your loved one wants you to offer encouragement and hope, when actually he or she just wants you to say “I’m with you in what you are feeling, and we’ll face this together no matter what happens.”
The point is to talk with your spouse about his or her emotional reactions and concerns and to ask what your spouse needs from you. Some of these needs may be concrete or practical: going together to doctor’s appointments, becoming educated about his or her cancer and the treatment options, handling all the phone calls from friends and relatives, and taking over more household chores. Other needs may be more emotional: being attuned and responsive to what your spouse is feeling, encouraging your spouse to confide in you, and offering empathy and support during difficult times.
Support Your Partner’s True Feelings
Most cancer patients feel pressure to maintain a positive mental attitude, and too often this pressure prevents them from expressing their true feelings. Your partner might hold back in sharing legitimate fears because he or she does not want to disappoint or burden you, or because he or she thinks that negative emotions might jeopardize healing. Actually, it is the suppression of fears, sorrow, or anger that could jeopardize your partner’s psychological adjustment and immune response. Your loved one probably has good reasons to be worried and upset, as well as to feel hopeful and optimistic. You should try to support and validate both sets of emotions (not only the positive ones).
Confront Sexual Issues
Your spouse’s cancer and the treatments have probably affected his or her sexual interest, sexual functioning, or feelings of attractiveness. Some common examples are the loss of libido caused by chemotherapy and hormonal therapy, the impotence caused by prostate cancer treatments, and the body image effects of mastectomy and reconstructive surgery. Even without such specific problems, the depression that cancer can cause can reduce libido and sexual functioning. The bodily or mood changes in your spouse can also cause you to lose interest.
The key to dealing with these issues is open communication. Because your partner might be reluctant to broach these topics, you could take the lead by acknowledging these issues and conveying your desire to face them together. You might also go out of your way to reassure your spouse of your love and devotion and that your feelings are not motivated just by physical attractiveness or sexual performance, that your main priority is his or her survival, and that you continue to desire an intimate physical relationship.
I know of hundreds of couples who have followed these principles. They have told me that the bond between them has actually been deepened and strengthened. “It’s ironic,” one husband told me, “but somehow having to face death, and having to say good-bye to each other if that happens, has made us hold on tighter and cherish what we have.”
Frequently Asked Questions:
What do we tell our children?
The parents I see frequently underestimate the fears and questions their children have. Many worry that talking to children about cancer will frighten them. Parents may not realize how easily children pick up on the emotional state of the adults around them. In most instances, there is no way to hide the fact that something is different once a parent has been diagnosed withThe parents I see frequently underestimate the fears and questions their children have. Many worry that talking to children about cancer will frighten them. Parents may not realize how easily children pick up on the emotional state of the adults around them. In most instances, there is no way to hide the fact that something is different once a parent has been diagnosed with cancer.
When a parent is diagnosed with cancer, parents may feel that their children are “just fine” or are not that interested in what is going on. Some say, “Whenever I bring up the cancer, my kids say they don’t want to hear about it, that everything will be just fine, or they leave the room.”
In such cases, it may be helpful to put an arm around the child while explaining what is happening. There is no need for a long discussion, but there are some essential points to get across:
Mom/Dad was diagnosed with cancer.
Not all cancers are alike.
New and better treatments are being discovered every day.
Mom/Dad is having good care and treatment.
Sometimes the treatments and the diagnosis are stressful and scary, so there may be tension in the house and even sorrow or crying. This is normal for a time like this. The doctors say that in a few months life will be a lot easier, and that we will all feel much better. You can help by remembering that this is a stressful time, that it will change, and that we love you very much.
The type of cancer Mom/Dad has is not found in children (most cancers are not). Most cancers do not run in families. By the time you are grown, doctors will be able to stop many cancers or treat them in easier ways than is possible right now.
Mom/Dad is fine at present. The treatments are proceeding the way they should. If there is a problem in the future, we will tell you right away. I hope that when you don’t feel well, you will tell us also. Meanwhile, it is important for you to keep doing all of the things you usually do and tell me if you are worried. We want you to go on about your life as much as you can.
Why am I having difficulty talking to my spouse?
Few appreciate the pain, fear, and confusion endured by the spouse or partner. Unfortunately, while attention and treatments are being given to the person with cancer, the spouse is sometimes shunted aside. Little or no time is spent giving the spouse of the cancer patient tips about how to proceed, leaving many to tell me they felt they had to “reinvent the wheel.” For example, many of those who were diagnosed with cancer say that when they try to tell their partners about some of their fears, the response is, “Oh, don’t worry about it. I’m sure everything will be okay.” When this reply is repeated several times, the person with cancer may refrain from communicating his or her fears about the cancer diagnosis and the couple may grow apart.
Instead of remaining quiet and suffering, the person with cancer might find it useful to tell the spouse what is actually needed in direct terms, such as, “I’ve noticed that when I tell you I’m scared, you tell me not to worry. I’m thinking you say that because you care for me and you don’t want me to worry. But when I tell you how worried I am, what would help me most is a hug and to hear you say how much you love me and that you worry sometimes, too.”
In general, the more the couple can talk about the areas in which they feel they are not communicating and the more they can be direct about their wishes and needs, the more the relationship will be strengthened. Also, the more the spouse can participate in the ongoing decision making and treatment discussions and the more experiences the couple can share, the less likely it is that they will drift apart. When it is not possible to share the experience, talking about it together later can help spouses to stay in touch. Unless this ongoing communication occurs between the person with cancer and his or her partner and children, family members will be unable to know what the person with cancer is experiencing and feeling. In time, the person with cancer can begin to feel like Marco Polo—coming from afar with fantastic stories and feelings that are hard for others to understand.
Many spouses of cancer patients are greatly helped by having an opportunity to get away from their home responsibilities on a regular basis and having someone other than the person with cancer with whom they can speak about their feelings and concerns.
We are losing contact with some friends and family, what can we do?
After a cancer diagnosis, many people tell me that friends and relatives don’t call as often as they used to. Some even appear to be avoiding them. In time, the person with cancer may conclude that those who haven’t stayed in touch just don’t care. In such cases, it is not uncommon for a breach to occur in a family or for old friendships to end. It is important at such times to be aware that friends and relatives may sometimes need to be educated. Some may not call because they are afraid of saying the wrong thing, calling at the wrong time, or feel they just don’t know what to say. Many of those with cancer have great success when they call a friend or relative and say straight out, “I haven’t heard from you in a while and thought it might be because you don’t know what to say or you thought that I might be resting. Well, you don’t need to watch what you say now any more than you did before. I’m the same person in many ways and I’m getting good care. Sometimes it’s hard, but I am not too busy or too tired for friends/relatives. I hope you won’t let this come between us. Would you like to go to a movie [take a walk, etc.]?”
How can I improve communication with my family and friends?
Illness, incapacity, and the threat of death are difficult subjects for a patient and his or her family and friends to discuss together. You may want to talk to each other but be hindered because you want to protect one another, or because you do not wish to face the truth yourselves. The inability to communicate can occur with all people at any time, but it is usually heightened under conditions of stress.
Families and friends faced with the life-threatening illness of a loved one have the dual problem of trying to control their own fears and anxieties while giving support to the patient. They may spend their time wondering how to ease the patient’s emotional suffering, while the patient is busy worrying about the despair of those he or she loves. Each is searching for the most tactful way to deal with the other.
Our experience with patients has shown, however, that a deliberate policy of candor and openness will create an atmosphere that is beneficial to all concerned. It can remove the burden of secrecy and open the door for the alleviation of apprehensions. Candor may not be easily achieved, for often people are not in the habit of speaking about their deepest concerns. Even those who have established close relationships may become fainthearted in the presence of cancer and the threat of death. To achieve openness and to maintain it under stress is part of the challenge of living with cancer—for both the patient and the patient’s family and friends.
Hearing what others are experiencing is never as devastating as what the imagination can conjure up. Fears and frustrations should be talked about as they arise, rather than being left to fester until they become too frightening to mention, or until a habit of withholding evolves into inevitable isolation. Confronting each other’s fears, therefore, becomes a means of keeping those fears under control. Candor will allow relationships to operate in a new realm, in which despair can be minimized or set aside and enjoyment and pleasure can resume their rightful places.
Candor between a patient and his or her family and friends includes recognizing one another’s needs as well as one another’s fears. Family and friends need to give, to feel they are doing something practical to hasten the patient’s recovery, whether at home or in the hospital.
How do I say goodnight when it's time to leave the hospital?
The separation caused by hospitalization is particularly traumatic to the family. They leave the hospital each evening and worry about whether their loved one will ever again lead a normal life, or whether he or she will even leave the hospital. Feeling powerless, they need to give of themselves. Fortunately, there are many practical services a patient’s family and friends can perform while the patient is in the hospital—services such as feeding, walking, turning, and massaging. These, along with the offer of special foods, a favorite pillow, or a comforting hand, become the routine of the daily hospital visit, giving solace to the family and friends as well as to the patient.
When the patient is critically ill, it is not unusual for at least one family member to be in attendance around the clock. This may mean sleeping in a chair beside the patient’s bed. To obtain up-to-date information on the patient’s condition, relatives may rearrange their schedules so as to be present when the doctor makes rounds or a particularly helpful nurse is on duty.
My spouse is finally coming home! What lies ahead?
When the patient is at home, and functioning well, there are still many opportunities for family and friends to give emotional and practical support. One need only consider what the cancer patient must sometimes be feeling: anxiety about a visit to the doctor, wondering whether a new problem will be discovered or a new treatment recommended, dreading the side effects from the day’s treatment, and concern about lack of transportation to and from the doctor’s office. A family member or friend can offer a ride or go with the patient on the bus. If everyone is working and cannot be with the patient during the day, there is still the evening, when the side effects of therapy may have to be endured. Patient, family, and friends all benefit from any means by which love and encouragement can be expressed.
To be realistic, however, not everyone is able to be open, loving, or supportive in crisis. Even stable relationships may be severely threatened by the pressures of long-term illness. Latent problems may emerge, and anger or guilt may surface in sudden attacks or recriminations, or in indifferent or overly solicitous behavior. The exhaustion and frustration of constant worry and care may break even the most loyal supporter. Family and friends must be reminded that they need time to themselves and moments of rest if they are to keep emotionally and physically fit. Calling on other friends or relatives for assistance can provide a respite from the responsibilities and worries of constant caring.
Children of cancer patients often need special understanding. Absence of a parent during hospitalization and the parent’s fatigue following treatment may cause children to feel neglected and lost. Children may also feel they caused the illness; this misconception must be corrected quickly. Reassurance from other family members is important for children to realize they are still loved. Adolescents are particularly vulnerable to stress, as they may be asked to assume a supportive role, to approximate an adult partner or spouse. If this responsibility is beyond the adolescent’s capabilities, he or she may rebel by not making hospital visits or by excessive drinking or drug use. Adolescents are adults—up to a point—but they still require the reassurance and comfort routinely given to younger children.
How do we deal with the wear and tear of living with cancer long-term?
When a person has fought long and hard against cancer, losing and regaining hope many times, and then realizes that the battle is not to be won, he or she may, at times, experience rage or depression that will focus on the nearest available person—the patient’s spouse or significant other, child, parent, friend, or the nurse on duty. This anger usually manifests itself as irritation over trivial matters that normally would not even concern the patient. The person under attack needs to understand that this is not a rejection, but a cry of anguish.
In addition to anger and depression, a patient must also endure the endless boredom of being ill, as well as the fear of being a burden when he or she really wants and needs special attention. Ironically, the people from whom this attention is demanded may be suffering from the same tedium or from feelings of inadequacy and guilt for being unable to relieve the suffering. They may not be able to cope with the reality in which the patient is imprisoned. The result may be a gradual diminishing of attention and care by the family, and increased bitterness and fear of isolation for the patient.
No one should be blamed for the ways he or she responds to the crisis of a long-term illness or the threat of change and loss. Some people and some relationships grow stronger, experiencing new depths of love, respect, and understanding; some waver, yet hold together; and some collapse.
The most important thing that family and friends can do for a patient is to be supportive, give encouragement, and do everything possible to promote his or her recovery. However, it is vital that they do not err on the side of being overly solicitous, because this deprives the patient of the accomplishments that can give a sense of independence, purpose, and self-esteem, and concrete proof of progress in returning to a normal life.
How do I talk about my cancer to others?
How open you should be about the fact that you have cancer or about how your treatment is going is entirely up to you. There is no single “right” way to talk about it. There are no “right” words to use. Like everyone else, you will have to find your own comfort zone and the words you’re most comfortable using. If you would rather talk about your “malignancy” or “tumor” or “growth” or “lump” or “problem” than keep using the word cancer all the time, so be it.
Although it can be hard, it makes sense to be open and direct with your family and close friends if you feel comfortable doing that. Without candor and openness, concerned relatives and friends are left with their own darkest imaginings. They have their own fears and frustrations that will only grow into terrifying phantoms if they are left behind a veil of secrecy and ignorance of what you are really experiencing. A mutual confrontation of fears is a good way of keeping your own fears and the fears of others under control.
Being open doesn’t mean that you have to start every conversation with the story of your latest aches and pains. Nor, if someone asks how you feel, do you necessarily have to answer with a long detailed description. The litany of the person who wants sympathy or empathy—“I’ve got it bad. It hurts here and here. I’ve got to get this treatment”—makes a lot of people want to avoid you. People with cancer are often avoided because, by their own conversation, only bad things seem to happen to them.
Another person in our experience—a military man and pharmacist who had lymphocytic leukemia and, concurrently, colon cancer—was a very open, extroverted person. But if someone said to him, “How do you feel?” he always said, “I never had it better in my life.” For him, this was a great opener, ending any conversation about his cancer that he could have found depressing, demoralizing, or inappropriate. It also made the association with others far less uncomfortable and much warmer because no one was made uneasy.
Short-circuiting painful conversations like this is one way of coping and getting on with your life. But, again, it is not the only way. What is right for you is your own decision. For you, it might not be helpful to just say “fine” if someone asks how you are doing. Such an automatic social response might be appropriate for friends, relatives, or co-workers you are not particularly close with, but not for someone close who is trying to be supportive.
The same caution applies the other way. When you are feeling low physically or mentally, many people will try to buck you up by telling you, “Don’t worry, everything will be fine.” This is a common, socially acceptable statement we are all taught to say to show support. But the true message seems to be, “Don’t tell me that you don’t feel good; tell me you’re okay.” When you really aren’t feeling so good, this kind of support obviously contradicts what you know to be true. At such times, it is especially nice to have a close friend or relative who can say, “I’m sorry you’re feeling down, and I’m glad I’m here for you.” For that special someone to be there for you, you have to be able to communicate truthfully how you really feel.
What are my friends and family going through?
Cancer is a personal disease, but everyone close to you suffers in some way. Cancer is especially hard on family members, particularly when you are in the hospital for an extended time. The period of separation can be traumatic.
Family caregivers are often very stressed. Everyone in the family wonders where you will be in a month or two months down the road—in the hospital, a nursing home, at home and needing nursing care? They are afraid you will have great discomfort or pain.
Very often, the family struggles with questions about how needs can be met and care arranged in such a way that insurance companies will pay for it. They wonder how other caregivers can become involved so they can get back to work. Relatives who live some distance away may have to make plans for the care of their children so they can come and provide help for a few weeks or a month. Schedules may have to be rearranged, but people are often uncertain about when they should come. And all members of the family have fears of losing someone who is an important part of the family’s life.
What are my children going through with my cancer?
When you are away in the hospital or when you are back home but feeling tired from treatment, it is not unusual for children to feel lost or neglected. You and other family members have to reassure them often that they are still loved. With younger children, you may also have to quickly eliminate any notion that they somehow caused this illness. Teenagers are especially vulnerable to stress. They have all the same worries that other members of the family have. They have the same needs for reassurance as younger children. And at the same time, they may be burdened by having to take on adult responsibilities around the house. If all this becomes too much to bear, they can rebel by cutting the number of visits to the hospital, not doing their new chores at home, or even drinking alcohol or taking drugs.
How do we deal with family stress?
Not all families are supportive all the time. Realistically, not everyone is able to be open, loving, and intelligently supportive in a crisis. Families sometimes feel death before it even happens. Oncologists have seen patients take a turn for the worse, then have seen family members decide emotionally and psychologically that all is over and stop coming to the hospital for visits. The family goes into mourning while the patient is still trying to get better and have hope. It’s sad to say, but oncologists sometimes see family members fighting at the bedside over wills and codicils.
But even close families and stable relationships can be threatened by the pressures of a long-term illness. Emotional and physical exhaustion, frustration, and constant worry and care can all take their toll. Anger and guilt can surface in sudden attacks, recriminations, or indifferent or over-solicitous behavior. Other problems that may have been latent in a relationship for years can suddenly emerge.
All these possible strains just emphasize the need for everyone to look after his or her own needs. You have to do all that you can to look after yourself. Your family members have to be reminded that they need time for themselves. They need moments of rest and relief to keep themselves on an even keel emotionally and psychologically.
Both you and your family may be suffering from the same feelings of inadequacy, the same burdens of guilt, the same quiet anguish, the same sheer tedium of prolonged illness. Any or all of these can break the spirits of the most loving and courageous people.
No one can or should be blamed or criticized for the ways he or she responds to the crisis of cancer or the threat of change or loss. Some people and some relationships grow stronger. Some waver but hold fast. Some collapse. Some experience new heights of love, respect, and understanding.
The cancer treatments are hard enough, now I have to deal with anger and fear among my family members, what can I do?
Nothing can undermine your will to live and your “battle-ready” posture so much as the negative emotions that are so often the response to a cancer diagnosis— anger, fear, loss of self-esteem, and feelings of isolation. These emotions have to be resolved. If they aren’t, helplessness, futility, and resignation can easily take over.
How you react to the cancer diagnosis depends on your personality and how you usually adapt to life’s problems. If you are the sort of person who looks on adversity as one more problem to be attacked with determination or as simply something you have to make the best of, then your normal positive attitude will probably carry you through the initial shock of the diagnosis and the tough times ahead. But if you usually react to adversity by asking, “Why me?” you may spend most or all of your emotional energy being angry at the disease, the “gods,” or other people for bringing this catastrophe down on your head.
Anger is a normal reaction. In some ways, it can help you through the period of grieving that comes after the diagnosis. In fact, if you don’t feel some anger and find some way of expressing it, you may be setting yourself up for a period of depression. But there is a time for anger and a time to put anger aside.
If anger stays unresolved, it takes away the energy that could be channeled into coping with the disease and living life as fruitfully as possible. The first step in resolving it is to recognize why you are angry. If you don’t, you may find yourself taking out your anger on others, finding fault with friends or family, making a big deal about trivial matters, or flying off the handle at the slightest provocation. The result may well be that you drive needed people away just when you need them most. But if you recognize your anger for what it is, you will be getting your mental attitude set to cope with it.
It’s important to let your anger out. Talk about it. Scream. Punch a pillow or throw things around—anything to help release anger’s hold on you. Then work to apply that energy in a positive and useful direction. Tell the world you just ain’t ready to go, and put your anger to work to make sure you don’t have to.
How do I deal with my fears?
Most people hear the word cancer and immediately think of suffering, prolonged disability, or the phrase “Nothing can be done.” These responses may be okay for the movies, but except in unusual circumstances, they don’t have a lot to do with the reality of cancer treatment today. Something can almost always be done. Pain and other side effects of treatment can be controlled. Disability is not inevitable. Most people are surprised to learn that their ideas about cancer are much more pessimistic than the facts warrant.
But no one with cancer has any experience or training in how to deal with the sometimes scary events that happen day to day, week to week, or month to month. Even if the surgeon “got it all out” or the radiation or chemotherapy seems to be working, there is always a fear that the cancer will come back.
Fear is a terrible master if you let it get a grip on your life. You can literally be “frightened to death.” It is a documented phenomenon in modern medical practice that people who accept a cancer diagnosis as a death sentence can die quite quickly, long before the disease has progressed far enough to cause death by itself.
A diagnosis of cancer is not a death sentence. The first question people usually ask when they get the diagnosis is, “How long have I got?” Unfortunately, some doctors still answer with an unqualified “six months” or “a year” or “two years.” Specific predictions like these are simply not valid. Such figures may be published averages for people with a specific type of cancer, but they are only averages. Obviously, some people did not live as long as the estimate and some lived longer. By definition, half of the people live longer than the “average.” No estimate of individual survival can be made until therapy has begun and the response to it has been established. Until then, predictions are, at best, guesswork and uncertainty that can only stifle hope and the will to live.
Knowledge and understanding are the keys to freeing yourself from unreasonable fear. If you want to know the truth about cancer, talk to oncologists and other members of your health care team. Don’t listen to what friends, relatives, or acquaintances tell you or take reports in the press as gospel. Fears can be resolved if you understand clearly the problems you face, if you understand the treatments and supportive measures that might be taken, and if you have a reasonable and realistic estimate of the discomfort or inconvenience you can expect.
How do I deal with the fears of my family and friends?
Even if your own fear is under control, well-meaning friends or family members can communicate their fears to you. Unless you are prepared for this, you might find your reserves of emotional energy drained and a depression coming on.
The only way out of this situation is to either hide the fact of your cancer or make sure your family and friends understand your disease and treatment. You may even want to include some of them in your consultations with your doctor so they can become part of your “informed” support team. This may also help your doctor, for, from the doctor’s point of view, many of the problems in communication come from the family— the husband or wife, the sister or brother, the cousin or friend, who has heard about a cure somewhere or about someone who’s had better treatment. By making sure that all interested parties are kept informed, everyone can focus their energies and efforts on the most constructive channels.