Coping with advanced cancer
Advanced cancer can be very scary and may very well be the hardest thing you and your loved ones have ever faced. If you have ongoing concerns that interfere with your lives, or if you just want to communicate and cope the best you can, consider talking with a mental health professional. It can often be very comforting to talk with an expert about your situation. Social workers, psychologists, and psychiatrists are all licensed mental health professionals. You can find one by asking your cancer doctor or through the nearest large hospital in your area. Even one session with a licensed mental health professional can often help you and your family focus on what matters most. Your cancer care team will work with you to find the right professional for you.
Dealing with worry and the unknown
Learning that you have advanced cancer may make you feel lost and afraid. This is normal. You may have questions such as:
- What’s going to happen to me?
- Have I done everything I should have done?
- What are my treatment options?
- Am I going to die soon?
- How much control will I have over my life? Over my death?
- Will my wishes be followed?
- How much pain and suffering might I have?
- What if I feel that I can’t take more treatment?
- Am I a burden to my family?
- Will this be too much for my family to bear?
- What am I going to do about money?
- How long am I going to have to go through this?
- What happens when I die?
The list of concerns and fears may be overwhelming to think about. Worrying may make it hard for you to focus. Restlessness, shortness of breath, trembling, heart racing, sweating, dry mouth, and grouchiness are other signs of worry. But few people have all of these symptoms.
There are professionals who can help you manage these concerns. Along with your doctor and nurse, there are social workers, psychologists, psychiatrists, and pastoral counselors who are specially trained to help you talk about your concerns, control your fears, and find meaning in what you are going through. They can also support your family. Your doctor will know the local mental health experts in your area.
- Sometimes just talking about feelings helps to relieve worry. Choosing the right person to talk with can be important. For some, that person will be a minister or a good friend. For others, it will be a family member.
- Trying to relax with deep breathing and other techniques can help. It works best if you practice and do it regularly.
- It’s important to let yourself feel sad and frustrated, without feeling guilty about it.
- Spiritual support is helpful for many people.
- If your worry is upsetting to you or your family and lasts for long periods of time, it’s important that you ask to see a mental health professional who is specially trained to work with cancer patients.
Along with these measures, a doctor may be able to suggest medicines to help treat anxiety or depression. Short-term use of these drugs is often helpful and is rarely a problem. It could be just what you need to regroup and go forward.
Hope is an important part of everyday life. Hope gets many of us out of bed in the morning and keeps us going throughout the day.
If you have advanced cancer, you can still have hopes and dreams, even though some of these may have changed since you learned about the cancer. Your hope may be to have a pain-free day, or to do something special with a family member. Just sharing and talking openly can be a hope for people with cancer and their families. There may also be real hope for relief of symptoms and slowing down the growth of the cancer.
And there’s always hope to make the most of the time you have left – for good times with family and friends, times that can be filled with happiness and meaning. For many people, this is a good time to refocus on the most important things in life. Now is the time to do things you’ve always wanted to do and stop doing the things you no longer want to do.
Feeling less alone
Depression and feeling alone often go hand in hand. Depression can make you feel the need to withdraw from others. The illness and the demands of treatment can also sometimes cause you to be alone. People with cancer can sometimes be alone even if they want to be with others. This can happen because of physical problems, lack of transportation, or treatment schedules.
You may even feel alone when you’re with well-meaning friends and family. You may have a hard time sharing your feelings about cancer. Others might be uncomfortable hearing about your illness. This isolation in the company of others can sometimes feel worse than if nobody were there.
Sometimes a person with cancer may feel like they need to ask others if it’s OK to talk more freely. And it’s OK to let others know what you’re comfortable talking about. It can often be helpful if a friend or family member arranges for others to visit you. Trying to do things outside the home can also make you feel less alone.
Managing feelings of guilt
Both people with cancer and those in their support circle often have feelings of guilt. If you have cancer, you might feel guilty about being ill. These feelings can last even though you know it isn’t your fault. Making others aware of your discomfort or telling loved ones that you need their help can make you feel guilty, too.
For the people caring for the patient, guilty feelings can be a daily struggle. Those who are healthy might feel guilty about their good health. They often feel bad about not doing enough for their loved one. Sometimes they even feel bad about the resentment that they feel for what they are doing.
There are some things you can do that may help with feelings of guilt:
- Sometimes just talking about these feelings can help. It can clear the air and help ease everyone’s conscience. Sharing this common feeling can bring you closer together.
- Letting each other off the hook is helpful. You can tell each other that you know everyone is doing their best.
- For caregivers, sharing the work is important. Friends and family who want to help should be given specific tasks to lighten the main caregiver’s load.
- If the guilty feelings don’t go away, you might need help working through them. Talk to your doctor about meeting with a trained mental health professional who can help you better understand and manage your feelings.
Facing family issues
Advanced cancer changes the way family members relate to one another. Families that are able to solve conflicts well and family members who support each other do best in dealing with a loved one’s cancer. Families who found problem-solving hard in the past are likely to have more trouble dealing with this stressful situation. You might want to meet with a counselor and work together to plan how best to support each other and anticipate problems.
Roles within the family may change, too. How family members take on new tasks and fill in for the person with cancer affects how they will adjust to losing that person.
For the person with cancer, the changes in family roles can trigger the grief that comes with loss. For example, a woman who is too sick to get out of bed may feel the loss of her role as a wife and mother. Understanding this and finding ways for her to still be involved in her family’s day-to-day life may help both her and her family.
People with cancer often say that lack of communication in their families is a problem. Changes in responsibilities can cause resentment and anxiety. Family counseling may help family members learn to deal with the changes that are taking place. It can also help members discuss their feelings more comfortably. Counseling is especially helpful in families where some members do not feel comfortable openly talking about their feelings.
The needs of family members and caregivers are important, too. Information written for caregivers can be found on our website, or call us for free copies of What You Need to Know as a Cancer Caregiver and/or What It Takes to Be a Cancer Caregiver.
Maintaining sexual feelings and closeness
During advanced illness, sexual relationships will change. This can be because of physical symptoms such as tiredness, trouble moving, or pain. It can also come from holding back emotions. In most cases sexual desire may decrease, but this does not mean that the need for physical closeness and touching will change. In fact, the need to be held and touched may increase. Talking about feelings and continuing to touch and be close to each other can help with feelings of isolation. Still, if you have any doubt about whether it’s OK to act in a sexual manner or to simply touch, just ask and talk about it. Don’t assume one way or the other.
Getting through a long illness
Illness that goes on for months or even years can put huge stress on the family. The longer the stress lasts, the more at risk the family is for mental distress. Family members may become exhausted in body and mind. Fatigue added to worry and fear can take a toll. Find ways to get support for the caregivers. Keep asking how everyone is holding up.
You can get more information on taking care of the caregiver in our documents, What It Takes to Be a Caregiver and What You Need to Know as a Cancer Caregiver. We also have checklists that caregivers can use to decide if they need help coping.
Anyone with advanced cancer faces the reality that he or she may die soon. Family members must recognize this, too. Even if the person with advanced cancer is doing well at the moment, death is a likely part of the near future. Thinking about death is frightening and painful for many people. Patients and families often worry about suffering before death and being alone in death.
Many people with cancer want to be at home until the end. Dealing with a long illness and dying at home can be easier with the support of family and medical staff.
The main goal for a death that cannot be avoided is that it be a “good death.” A good death is one with the least possible amount of pain, discomfort, or suffering for the patient, and the least possible suffering for the family and caregivers. A good death is one that’s in line with the patient’s and loved ones’ wishes, including their culture, values, and ethics. Loved ones are also supported and are with the patient as much as they and the patient want, especially as death nears. Ideally, this allows goodbyes to be said and problems resolved before death. It also allows loved ones to be with the patient at the end.
Our document, Nearing the End of Life, has been written to address questions that patients and loved ones ask about what to expect during the last 6 months of life. You can get a copy by calling our toll-free number or visiting our website.
Last Medical Review: 02/07/2014
Last Revised: 03/06/2014