Advanced cancer affects everyone whose life it touches- the patient, family, and friends. Dealing with the changes and the problems caused by a terminal disease and facing the future are difficult changes.
This post aims to help make living with advanced disease easier by providing practical information and by addressing questions that are often asked. It does not attempt to minimize the seriousness of having advanced cancer or deny its difficulty.
Throughout this read, we want to stress this messages:
- Try to live each day as fully and normally as possible.
- Many of your concerns can be eased with medical skill, emotional support, knowledge, faith, and love.
- A decision to make the most of the time available can help you help yourself live with advanced cancer
It is possible to live with a sense of purpose and the hope that good relationships will continue, that family and friends, and caregivers will be available to provide the support you need, and that each day will offer its measure of happiness.
Even at this difficult time, there are many things that can be done to help you and your loved ones.
Living with Advanced Cancer
Few people like to think about dying. We all know that death will come, but most of us spend little time thinking about it.
Many of us think of dying as something that happens to other people, believing that we will live on and on.
While this belief may be comforting, it is no longer useful when you have weeks or month-not years-to live. Approaching death often required changing how we look at life and what we value. You will need time to think about death and apat its approach.
One patient with advanced cancer expressed his philosophy about dying this way:
“The death rate for any generation is 100 percent. We all die. However, I know what will probably kill me, while most people don’t. We have no guarantee of how long we will live. But I believe it is truly the quality of life, not the quantity, that is important.”
There are no right or wrong ways to face the end of life. You need to do what is right for you. Many people with a terminal illness have been able to find peace of mind by coming to terms with their emotions and beliefs about their lives, and about dying. You may be able to do this too, in your own way and at your own pace.
How Others Have Coped With Advanced Cancer
There are probably as many ways to cope with advanced cancer as there are people trying to do so. Each of us is unique, and we each find our own way to live and to die. Still, we have many feelings in common and may approach the knowledge that our time is limited in similar ways.
Many people find it easier to concentrate on the present, and do not focus on the distant future. They think of the future as the end of each day, and live one day at a time.
Others find it more helpful to plan ahead-within limits-days, a month, 6 months, possibly a year. They find that it reaffirms, to themselves and to others, that there are still things they want to do.
Their plans may be general, such as enjoying family and social relationships and talking about their thoughts and feelings, or specific, such as reading a certain book, or watching their favorite movies and series.
Some view having cancer as a challenge to be met or a battle to be fought. They think of each day they survive as a victory.
Others cope by rethinking what is important in their life and what is not. “Disease rearranges your values, and you cast off things. You reduce the trivia to a minimum, you simplify life…”
Still others may not be able to accept the seriousness of the situation that may deny the fact that they are dying until their final moments.
Many people are emotionally overwhelmed when they first learn their diagnosis. With time, their reactions may change to acceptance and a desire to do as much as possible in the time that remains.
Others, instead of accepting, lose their ability to cope and their will to live. This does not have to happen. You can choose the way you wish to face each day.
Even if you are very ill, you may still have physical and emotional reserves. Deciding to call on these reserves can help revive your spirits and your will to live.
We are all born with the will to live. Exactly what influence this force has in curing disease-especially cancer-has long been debated, but there is little argument that a strong desire to live can enhance the quality of life. Those who are determined to live fight harder and sometimes seem to do better.
There are many people with advanced cancer who have lived far longer than expected. A positive attitude about the value of life, along with a combination of hope, endurance, willpower, and courage, are common characteristics of such people.
When asked to explain how they have managed, these people often give answers such as “I’m needed too much at work” or “I can’t die until my grandchild is born” or “I need to help my daughter.” They do not seem to want to give up or retreat from living. A keen interest in daily events appears to keep them from giving up.
Others have approached illness and dying from a different point of view. They believe that life is so precious, under any conditions, that they simply will not let it go. This intense need to go on may be present with or without the help of family, friends, concerned caregivers, or effective treatment.
It may even exist without any apparent sources of encouragement. These people seem to generate their own hope and keep going through sheer willpower.
This does not mean that a positive mental attitude will necessarily lengthen your life. Neither does it mean that you are inadequate if you are sick and not getting better.
But trying to emphasize the positive aspects of your life can add meaning, purpose, and comfort to the time remaining.
What You Can Do
Accepting responsibility is one way to help yourself. By actively participating in daily activities with your family and friends and in your care, you say “I care about myself”.
Set goals for yourself that are realistic so you do not become discouraged. Find out what caregivers, friends, and family are doing for you and what you can do to help yourself. Let them know what you need; this may include their presence, concern, and honesty.
You can also accept responsibility for your frame of mind. Set the tone for those around you. As one patient said, “You have to do this because no one knows how you want to be treated, and they may be waiting for a cue. No one else will talk about it unless you do…”
Your caregivers may recommend a regular exercise program (even if you are in bed most of the time), medications to be taken at certain times, and nutritious food. These measures or others prescribed for you may, at times, seem unimportant in the face of declining health, but they will help you to keep your strength and your independence for as long as possible.
Working with your caregivers and family can help you maintain a sense of control, purpose, and hope. Encouraging honest and open communication will help you to live the way you want to, and it will let others know how you want to be treated.
Living with serious illness can be very discouraging. You will have good times and bad times too and your ability to deal with these changes may vary.
In the morning you may feel down, but by the afternoon you may feel much better. On one day you may have little energy, but on another your mood and spirit may rebound. During a bad time, try to remember the good moments and remind yourself that there can be more good times ahead.
Sharing Your Thoughts
Many people with cancer have found it easier to live with their problems by sharing them with someone. The weight of your problems may be lightened just by talking them over with family members or a close friend. They may even think of a way dealing with a problem that has not occurred to you.
You may find this kind of sharing difficult, and sometimes it may also be hard for family members or friends. If this is the case, you might want to talk to a member of your medical team or with someone who is professionally trained in counseling, such as a nurse, social worker, psychologist, a member of the clergy, or other community and hospital caregivers.
Many people have found support by attending self-help groups where people meet to share common concerns. They say sharing and learning from each other gives them strength and reassurance.
Sometimes people prefer to work through their feelings alone, but it often helps to share. The emotions and thoughts that go along with advanced cancer are understandable and expected, and it is not necessary to hide them. Letting your feelings out can be a great release.
If You’re Alone
It may be very hard to keep up your spirits and be positive if you live alone.
Loneliness is not easy to deal with at any time and may be especially difficult during illness. Many people have found this time less lonely with the help of an adopted family, friends, a volunteer, or a member of the clergy.
If you need to rely on yourself for encouragement, try to cheer yourself on. It may be very hard to do, but it’s far from impossible. There are people who have learned to copy by thinking positively, helping others, and remaining as active as possible. Focusing on small pleasures- a delicious meal, a good book, a beautiful sunrise-has helped many people.
Intimacy
Advanced cancer affects all aspects of life including sexuality.
You may find yourself unable or unwilling to express yourself sexually as you did before because of physical changes and emotional concerns. This does not mean, however, you must deny sexual needs and desires. There are many ways to show love and to find satisfaction.
Open, honest communication is the key. Being willing to reexamine your attitude about intimacy will help you and your partner maintain the closeness, warmth, and sense of belonging generated in a loving relationship.
Physical satisfaction can be sought in a variety of ways and may or may not include intercourse. Toucking, kissing, stroking, and holding can also bring great comfort and pleasure.
Sexual problems may stem from feelings about your medical condition or treatment, rather than the condition or treatment itself. With patience and communication between partners, many of these problems can be solved.
An understanding that intimacy may not be the same as it was before can prevent unrealistic expectations and relieve some of the self-consciousness you or your partner may be feeling.
Don’t be afraid to seek help or advice. Ask-you are entitled to all the information you need or want. You may wish to seek counseling, and your doctor, nurse, social worker, or patient representative in the hospital may be able to guide you to a professional in this area. The library has many books on sexuality and you may find some of them helpful.
Living Each Day
Choose small goals and constructive ways to use your time, instead of dwelling on your illness.
Sometimes, asking yourself “What do I cherish?” or “What is important to me right now?” can help you focus on meaningful goals. Try thinking of the needs of your family and others close to you. You may enjoy looking through and arranging family albums, scrapbooks, or hobby collections. Pets still need to be cared for and plants watered.
Some people keep a daily journal of their feelings and experiences. You may want to try this, to share with someone close to you now, or to leave them as a remembrance.
Try directing your energy into living each day as it comes, and make each day count for what you can put into it.
The will to live is a part of each one of us. Some people think of it as a small flame that we carry within ourselves. For many, it is a source of strength that can make it possible to look forward with hope to each day.
Common Concerns
Some say it is not death we fear, but the days, weeks, or months that precede it.
Many of us are afraid there will be pain during this time, and we wonder if we will become a burden. We may think about the unknown, about isolation and abandonment, and that life will be over before we are ready.
Family and friends can help you to work out concerns and control fear- by listening when you want to talk and by being honest and sensitive to your feelings. But they may have fears, too. They need to know about your diseases, what they can and cannot do for you, and what to expect.
Knowledge and understanding may help you gain perspective on these concerns. If there is something you want to know from a member of your health care team, ask. Let your doctors, nurses, and others know what information you want and need. It is your right to receive answers, even to the most direct questions about your prognosis.
It may be a good idea to include those close to you in talk with your doctor. Talking directly to your caregivers may ease your family’s and friends’ concerns, give them a clearer understanding of how they can help you, and help them feel less helpless in a difficult situation. The value of honest communications for all those involved cannot be stressed too much.
Facing the Unknown
Many people with advanced cancer wonder what experiences they will miss in life, what the moment of death will be like, and what their fate will be after death.
They wonder, too, what will become of their family and friends, and how these people and others will react to their death.
It may help you to talk about these thoughts with a person you feel comfortable with. While some questions can be answered- immediately or in time- others have no answer.
A definite answer to practical, spiritual, and religious issues may not be possible, but discussing them- with a friend, partner, member of the clergy, or caregiver- may help you to explore these questions and feel less alone with them.
Dealing With Loneliness and Isolation
As cancer progresses, it disrupts the activities that have made up your daily routine. This can lead to feelings of loneliness and isolation. Sometimes this happens even if you are surrounded by family and friends because they can’t share your experiences.
One way to minimize these feelings is to try to live as normally as possible. Keep close at hand the things you have always enjoyed- photos, art, magazines, music. Surround yourself with familiar things.
Even in the hospital you can wear your own clothes, have your own blanket and pillows, and keep mementos and pictures nearby. You may want to keep up with local or national news, or watch a favorite television program with a friend.
Don’t be afraid to call and ask friends and relatives to visit. They may not have contacted you because they don’t know what to say or how to act, or are not sure you want visitors. If you do, let them know.
At first, you may wish to suggest specific activities- reading aloud, playing cards, watching television- until you and your visitor feel comfortable with each other again.
Despite all your efforts, you may still feel lonely and isolated or feel that your family and friends cannot understand your problems. Some days you may just want to be left alone, and that is okay too.
On other days, talking to others with cancer might provide the understanding and companionship you need. You may wish to join a support group for cancer patients.
Maintaining Self-Respect
It can be very hard for you to accept that your body is no longer as strong and reliable as it once was. As cancer progresses, your appearance may change and you may not be as independent as you once were.
This may affect your self-respect. If this happens, remember that the qualities that make you a good friend, a loving parent, or a caring mate are still there.
Even if you are bedridden, you can exercise a degree of independence and initiative. You can maintain control in little ways- setting up a schedule for getting up, shaving, bathing, and resting. (If you can’t do these things for yourself, you can let others know when you would like to have help.)
Whether at home or in the hospital, let those caring for you know which foods you prefer, whether you are comfortable, and if there is something you need.
Many people with advanced cancer are not bedridden. You may be able to do things you used to, but in a more limited way. Conserve your strength for those activities you really want to pursue.
Ultimately you will have to let others care for you. Dependence on others is natural when you are not as strong as you once were.
The Grieving Process
Sadness and grief come with the unavoidable losses that occur with advanced cancer and are not unusual reactions. Fortunately, the losses are usually gradual. You may be able to accept the losses and your feelings about them a little more each day.
Dealing with a particular source of sorrow and working through the emotions surrounding it may help you set it aside.
Grief about the people and things you must eventually give up does not have to be denied or hidden, but try to balance it with activities and relationships that have meaning for you and bring you happiness.
Managing Pain
Many people with advanced cancer are afraid they will experience physical pain.
If pain reaches the point where it disturbs you, it needs to be treated. It can almost always be minimized and often managed so that it does not recur.
The combination of appropriate pain reliefs methods, the opportunity to make personal and spiritual peace, and someone willing to listen and offer comfort and advice are probably the most potent pain relievers known.
There are many medicines that can be used alone or in combination to relieve your discomfort. Physical therapy and biofeedback, relaxation techniques, and self-hypnosis may also help.
Caregivers may be able to help you with these therapies, and you may want to see what the local library has to offer. The librarian can help you or a family member locate books and records on these topics.
The level of pain, your willingness to help manage your pain, and the cooperation of caregivers and family will determine which method is best for you.
Your doctor may prescribe narcotics (pain-relieving drugs) for you. When used under proper medical supervision, the chance of addiction to narcotics is small.
Most people can stop taking these drugs or decrease the amount of medication taken if their pain can be controlled by other means. If narcotics are the only way to relieve pain, your comfort is more important than the possibility of addiction. If you and your doctor decide narcotics are a proper choice for you, use them as directed.
Emotions and Pain
People with advanced cancer may be sad, depressed, angry, scared, or all of these.
These are normal reactions when you are very ill and realize you probably won’t live as long as you had expected. When your emotions become overwhelming they can make your pain seem more intense.
Talking about your feelings may help give you, family and caregivers guidance about what you need. It can also help to relieve sadness and depression, and may reduce pain.
Writing about your emotions in a diary may help too. Occasionally you may feel like kicking or punching a pillow or screaming and crying. Go ahead and do it.
Personal and spiritual problems may be troubling you as well. These can contribute to pain. You may want to bring up unresolved conflicts that have developed over the years between you and a friend or family member.
Approached with kindness and openness, old hurts can possibly be put to rest. At the least, some level of understanding can be established between the two of you along with happier, more peaceful feelings.
Your family or caregivers can arrange for a priest, rabbi, a minister, hospital chaplain, or other appropriate person to visit with you. Many people find comfort in expressing and trying to resolve personal spiritual issues.
A Theory About Dying
Each of us must face death and accept it in our own way, answering questions as best we can about the meaning of life, love, suffering, and struggle.
We can hope to find some measure of peace, and acceptance of the coming of death. Unfortunately, the journey toward these goals is not easy or steady. And sometimes, it is not possible for us to reach all our goals.
The emotions that many people with advanced disease experience have been examined by trained professionals. One whose theories have become well-known to the public is Dr. Elisabeth Kübler-Ross. You may have heard about the feelings she believes dying people experience.
Her work has provided guidance and comfort for many patients and their families, but it is important to remember that her theory is only one perspective on dying.
You may not experience all of the emotions that are discussed here. They are presented to reassure you and those close to you that your reactions are not unusual, but a part of the way we try to make peace with ourselves.
When patients are first told or realize they are dying, they often react with disbelief. It is a common way to cope with an overwhelming situation and can be helpful at first. Eventually, however, you must face reality, and in time many do.
This feeling of “No, not me!” often changes to “Why me?”. You may feel angry, resentful, even enraged. These strong emotions need to be expressed if they are to be relieved. This can be a very difficult time for you and those around you.
It will help everyone to understand that your anger is not meant for those close to you but for the situation.
People may make all kinds of promises to God or themselves with the hope of a longer life: “If I can live one more year, I’ll go to church every day” or If I can just live to see my son married, I won’t ask for more.” It is not unusual at all to do this.
At times you may feel depressed, because you have lost your independence, or because your savings were spent on medical care.
You can help yourself at this time by valuing what you have, rather than dwelling on what you cannot change.
As you move closer to death, depression over losses that have already occurred may give way to grief over the friends that have already occured may give way to grief over the friends, family, and life you are going to lose. This grieving should not be discouraged- it must be worked through in order to say a peaceful goodbye.
During this time it will help not to be alone, though you may find yourself gradually needing fewer people around you – perhaps just those you feel especially close to.
It may help your family and friends to understand that this type of withdrawal often occurs toward the end of life and it is not due to something they have done or should feel badly about.
Conversation may not be necessary, just the reassurance that someone is there for you who cares. Reassurance can be communicated by the presence of another, by holding someone’s hand, by a gentle touch.
Not all people facing death are able to find peace and acceptance. However, with time and help you may be able to come to the feeling that you have accepted what must be. At this time you need reassurance, more than ever, that you will not be left alone and all that can be done for your peace and comfort will continue to be done.
The People in your Life
Family and close friends are a primary source of emotional support for people with advanced cancer.
Those who are close to you need understanding and consideration as much as you do. Your expectations about what they can and should do for you should be tempered with knowledge about their feelings, abilities, and limitations. They may need time, just as you do, to adjust to your illness, and any feelings of confusion, shock or anger they may have.
Letting them know that you want them close and that you want them close and that you need their support will help with them with their own emotions.
How Children React
Children who have a parent with advanced cancer are almost always aware of a great change in their daily lives.
Even preschool children sense when something is wrong. They may be frightened by this change or become angry at you for being ill. Others, especially younger children, worry that they might have caused your illness.
Because of these possible reactions it is best to be honest and encourage communication. Try to let your children know that they are allowed to ask questions, and that you will answer them as honestly and thoroughly as you can.
Tell your children as much as you think they can understand. Keep in mind that many people tend to underestimate how much children do understand.
You may want to try telling them a little at a time. A partner or relative may be able to help- together you can watch for clues that the children have absorbed as much information as they can at that time.
Children need to know that they are still loved and important, and that they will continue to be cared for. A favorite relative or friend can help by devoting time and attention to a child who needs comforting, affection, and guidance. Perhaps this person can offer to help with homework or attend important school activities.
Taking the time to listen to a child’s triumphs, problems, and fears is important. This holds true for adolescents as well as for younger children. Teenagers are sometimes expected to assume responsibilities that are beyond their maturity.
If you can avoid imposing too much responsibility on them, while maintaining a sense that they are important family members and still entitled to their independence, you may be able to keep their problems to a minimum.
If this kind of support is not enough, professional counseling may be necessary. Your doctor, social workers, other community and hospital caregivers, and state or community mental health departments can guide you to a counselor who is right for you and your children.
Partners
Communication is a two-way street between you and your partner. Being honest about the emotions both of you are feeling can help you draw support from each other. Endearments, hugs, and kisses can also bring a sense of comfort and togetherness.
Be realistic about demands on your partner who is, undoubtedly, having a hard time too, and may be feeling guilty about your illness and any time spent away from you. Communication is especially important if you and your partner have been separated by hospitalization for a prolonged period of time.
Sometimes in the absence of their partners, patients begin to draw more support and relate more personally to members of their health care team. This pattern of relating may be difficult for partners to adjust to if they no longer feel needed.
Partners need time to meet their own needs, along with those of other family members. If these needs are neglected, your partner will have less energy, cheer, and support to give. Another family member or friend can sit with you for a short period of time while your partner attends to other details of daily life- a shower, a walk, phone calls to friends, or business matters.
The time away will replenish both of you, and give you the opportunity to visit with others. Remember, you didn’t spend 24 hours a day with your spouse before your illness. You still have many of the same emotional and personal needs that you did before your illness and may need some time apart. It is better to maintain your relationship as it was before as much as possible. If you are in the hospital, your doctor and nurses can provide support during the time your partner may be away.
Your partner may not be your only or primary source of emotional support. Sometimes it is a mother or father, brother or sister, or best friend. It may be one of your adult children.
These people have feelings, too, and other responsibilities. Keep demands as realistic as possible and try to keep communication flowing. Express your emotions and let them express theirs if they wish.
Well-deserved praise, a hug, a kiss, or hand squeeze are not out of place and can provide warmth, good feeling, and renewed energy.
Options for Care
Hospitals and machines that sustain life have become such an accepted part of illness that we sometimes forget there are other places and ways to live with advanced disease and approaching death,
Many patients are most comfortable in the hospital, where they feel assured of the care and comfort they need. Others want to remain, or return home, and this kind of care can be arranged with the cooperation of the patient, family, and professional caregivers.
Still others may have a hospice organization in their area and may wish to avail themselves of this kind of care. You may want to think about the choices available, and what would be best for you.
The Hospice Concept of Care
Hospices provide specialized care for dying patients and their families. In hospices, the primary concern is quality of life, not prolonging life.
They stress controlling pain and other symptoms so the patient can remain as alert and as comfortable as possible. Emotional, social, and spiritual health and followup care for the family are important too.
Hospices offer both inpatient and home care. There are free-standing hospices, hospices within a hospital or skilled nursing facility, or at-home care arrangements.
Making Treatment Decisions
Family, friends, and caregivers may find it hard to accept, but the time may come when continuing to live is no longer a patient’s top priority.
A patient may opt for experimental drugs and methods, or decide to end treatment. This point may be reached when standard therapy is no longer effective, when the quality of life is no longer acceptable to that person, or at some other time.
Practical Concerns
Careful planning can help to minimize the financial, legal, and emotional difficulties your family and friends may face after your death.
However, difficult it may be, discussing practical matters now can eliminate many problems. Advice from professional counselors and advisors- lawyers, members of the clergy, funeral directors, insurance company representatives- can help you make decisions that fulfill your requests and help those close to you.
You can help your family and loved ones by gathering copies of records, documents, and instructions they will need. A large envelope can be used to store copies of your important papers.
Only photocopies should be placed in the envelope. Originals should be stored in a fireproof place such as a safety deposit box. Be sure to tell one or more people where you keep the envelope.
Adapted from the National Cancer Institute publications.
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