Grief and Loss: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources.

Loss is when you are unable to be with or have someone or something that is important to you. Even though not always welcome, loss is a natural part of life. Grief is the natural human response to loss. It is the pain of being without something or someone you wanted or valued.

Most people think about grief and loss when someone dies. People grieve after the death of someone who was important to them. But people also grieve other kinds of losses. For example, you may have experienced grief when you lost a valuable possession, when a friendship ended, or if you were not able to achieve an important goal.

Some losses are more difficult to bear than others. When a loss is especially important, grief is more than simple sadness. It is a process that happens over a long period of time and can include a wide range of thoughts and feelings. Even though these feelings and reactions can be painful, it is important to remember that grief is a normal, healthy response to loss. Expressing your grief helps you adjust to the loss.

Anyone who is involved with the cancer survivor can experience loss and grief. Family members and friends of cancer survivors may experience similar forms of loss as the cancer survivor, or their experiences may be very different. This document will explore grief and loss from the cancer survivor’s point-of-view. However, much of the information and the suggestions can be helpful to family members and friends.

Do all survivors experience grief and loss?

No one is immune to grief and loss. As a natural part of life, grief and loss come to everyone and in many different ways.

However, no two people experience a loss in the same way. What can be a significant loss for one person may not be as important to another person. For example, hair loss from treatment can be very important to some, but less important to others. Losses can also have gains. For some survivors, the gain may be so strong that what has been lost seems unimportant. (“I’m grateful for the cancer experience. It has taught me to see what is really important in life.”) For others, the loss may be so intense that any gains may seem unimportant. (“Cancer has taken away everything that was important to me.”)

Also, not everyone experiences grief in the same way. Grief is unique to each individual in how long it lasts, how intense it is and what it means. How, when and what people grieve depends on many things. These can include your age or stage in life, your previous experience with loss and grief and the amount of social support you have. Even two people in the same family – or two people who have similar diagnoses and treatments – may respond differently to what has happened.

What losses do survivors experience?

Cancer survivors can experience many different types of losses. Some may be easy to see and name. Others may be harder to recognize. The loss may be temporary or permanent, life-altering or a minor inconvenience.

The following lists provide a few examples. Even though there is a category called emotional losses below, any kind of loss can be a very emotional experience.

Physical losses:

• A part of your body or a body function
• Changes in your ability to have sex
• Energy
• An ability or skill to perform certain activities
• Physical comfort
• Fertility

Emotional losses:

• Sense of security (in your health, in your future)
• Sense of control or independence
• Self-esteem or sense of identity
• Self-confidence
• Goals, hopes or dreams
• Faith or spirituality
• Your sense of life as safe and predictable
• Habits, such as changes in daily routines, or life “the way it used to be”

Social/relationship losses:

• Relationships with friends, family members or co-workers
• Sexual relationships
• Your ability to have your own biological child
• Loss of certain roles (For example, you can no longer earn money for your family, or you can no longer prepare all of the family meals.)
• Loss of other cancer survivors

Financial losses:

• Job or job opportunities
• Financial security
• Insurance
• Ability to work

How can survivors tell they are experiencing grief?

Generally, the grief process follows a recognizable pattern. It often begins with a period of not wanting to believe that you have experienced a loss (sometimes called denial). Sometimes anger follows the denial. As you begin to understand and release the feelings that you are experiencing, a time usually comes when you accept what has happened and move on.

Signs of grief include:

Strong feelings, such as:

• Emotional numbness
• Sadness, despair
• Anger, general irritation
• Guilt
• Fear
• Anxiety
  

Reactions in your body, such as:

• Crying
• Lack of energy
• Changes in eating or sleeping patterns
• Feeling generally “under the weather”
  

Changes in the way you behave, such as:

• Withdrawal/less productivity
• Hyperactivity
• Increased need for reassurance
• Changes in sexual patterns (more or less)
• Attention getting
• Aggressive behavior (hitting, demanding)
  

Changes in the way you think, such as:

• Avoiding or denying the loss
• Lowered self-esteem
• Not being able to pay attention or concentrate
• Thinking about your loss almost all of the time
• Idealizing the past or future

You may have all, many or only a few of these feelings and reactions. And you may experience them in any order. Every survivor’s experience with grief and loss is different. Having some of these feelings and reactions some of the time is a natural way to react to being without something you wanted or valued. At first, the periods of grief can be intense and frequent. Gradually, though, grief responses usually become less intense, last a shorter period of time, and happen less frequently. Knowing that these grief responses are common and sometimes expected can help you understand your situation better. However, you should talk to your health care team about any physical and mental health symptoms that do not go away.

A normal grief process can have its problems. Your feelings and reactions may be mixed and intense, causing you to feel confused or overwhelmed. The following questions may help you sort out whether or not you could benefit from extra support:

• Can you connect your feelings and reactions to particular losses you have experienced?
• Do you respond to comfort and support from others?
• Can you directly express difficult feelings, such as anger or sadness?
• Can you experience enjoyment in life?
• Are you able to seek and get relief from any physical complaints you may have?
• Are your feelings and reactions becoming less intense and less frequent over time?

If you answered “yes” to these questions, it is likely that you are experiencing normal, healthy grief that will resolve over time. If you answered “no” to these questions or if you are uncertain about how you are coping, ask your health care team for help.

Can a survivor experience grief and loss during, immediately after, and/or years after treatment?

Cancer survivors can experience grief and loss during treatment, during recovery from treatment, or months or years following completion of treatment. This is true for several reasons.

Being diagnosed and treated for cancer can be a traumatic event. At first, your energy may be directed toward coping with the immediate crisis – choosing your health care team, deciding among treatment options, and getting through the treatments. You may have been forced to put off acknowledging important losses. Later, when treatment has ended, you may find energy to focus on your emotional response to the cancer experience. You may also have unexpected reactions of grief to different losses.

Reminders of your experience with cancer can bring up grief years after treatment has ended. Examples include:

• Sensory reminders, such as a taste or smell
• Routine medical appointments
• Hearing about another person who has been diagnosed with cancer or who has died from cancer
• Anniversary events (such as date of diagnosis, date of going off treatment)
• Important events with family or friends (graduations, birthdays, holidays)
• Experiencing ongoing losses because of adverse aftereffects of treatment

Grief is not a single event. Instead, it occurs over time. Like waves in the ocean, grief comes and goes as you understand and appreciate various aspects of a loss. The amount of time you grieve can vary. There is no particular timetable that you must follow. However, if you experience grief for a long time and are unable to resolve your grief, you should talk to a counselor or therapist.

Even though survivors might experience grief and loss over time, people who fully experience grief can be happy again and may even feel stronger and more capable than before.

Will grief make my cancer come back?

Grief does not cause cancer and cannot make your cancer come back. Grief can be painful, but it is a normal process that can help you cope with losses and changes that have come into your life as a result of cancer.

However, pay attention to your emotions and how they impact your body. Grief that lasts a long time and is not resolved can lead to negative feelings and stress in your body. Talk to your health care team if you are unable to understand your grief. They can provide referrals to professional counselors who can help you understand what you are feeling.

Why should survivors talk to others about what they are feeling?

Important losses that are not grieved are difficult to resolve. They can rob you of energy and joy and prevent you from moving forward into a full and productive life. Sometimes survivors come to understand their grief on their own. However, talking with others can help you:

• Recognize your losses
• Express your feelings
• Connect your feelings and reactions to the experience of loss
• Understand your feelings and reactions as normal
• Find ways to cope
• Adjust to your life without what you lost
• Feel stronger and more capable than before

Even though talking with others about your experiences of grief and loss is important, it may be difficult. People around you may not recognize your losses or your grief. They may believe you should be feeling gratitude, not grief. It can be hard to acknowledge grief and loss when others see you as a winner, someone who should be grateful to be alive, regardless of what has happened. Grief can also be hard to acknowledge when others cannot manage to listen to the intense feelings that grief can sometimes bring.

If your friends or family members act like they don’t want to talk to you about your feelings, remember that they may not be used to talking about grief. They may really want to help you, but don’t know how. They may not be aware of how important it is for you to talk about your feelings. You can explain to them that you need someone to listen to you and support you. It might help them to know that you don’t expect them to make everything better, that you just need them to listen to you. It may not be easy, but it is important to let others know what you need.

The pain of grief subsides when it is shared. Good listeners can include not only family or friends, but also your health care team, mental health professionals, support groups and faith-based support.

This document was produced in collaboration with:
Bebe Guill, M.Div.
Director, Quality of Life Programs & Services
The Brain Tumor Center at Duke University Medical Center

Grief and Loss: Suggestions

Give yourself permission to release any feelings of grief you may have.

You have the right to express in safe ways your feelings about the loss of anything important to you without being judged for your appearance or your words.

If you are holding your feelings of grief inside, learn to recognize any barriers that may be blocking your grief. Some barriers to grief may come from within you. These might include:

• Fear that others will judge you as weak
• Fear that you, or others around you, will be overwhelmed by your feelings (“If I start crying, I’m afraid I’ll never stop.”)
• Thinking that some of the feelings and reactions of grief – such as anger or crying – are not appropriate to express
• Thinking that your loss seems trivial

Other barriers to grief may come from others’ comments or actions. Some people may try to comfort you or avoid your feelings of grief by saying:

• “Don’t cry. Everything is going to be just fine.”
• “Look on the bright side. At least you have _________.”
• “You have been a tower of strength. I don’t know how you’ve done it!”

If your grief is blocked, you can remind yourself that:

• Grief is a normal healthy process.
• Holding feelings inside makes them grow stronger and last longer.
• Releasing feelings reduces the fear and pain of grief.
• Feelings are just feelings – they are neither right nor wrong.
• Grief is a sign of the strength you have for living your life fully and well.

You do not need to reject people who are trying to comfort you. You can turn to other ways of safely sorting out and releasing your feelings.

Explore a variety of ways to release your feelings.

There are many safe things you can do to release your feelings. You can:

• Tell your story of grief and loss several times to someone you trust, someone who listens to you without judgment. Each time you tell your story of loss, you release the feelings of grief associated with it.
• Express your feelings through a creative outlet you enjoy, such as music or art. Try banging on a piano, drumming or scribbling with crayons.
• Have a good cry or, alternatively, a good, deep belly laugh. Watching a sad or funny movie that you enjoy can help trigger your tears or laughter.
• Find a safe place to yell or scream.
• Find a physical outlet, such as hitting pillows, going to a baseball batting cage or a golf driving range.
• Write down your thoughts and feelings in a journal.

Seek support.

Comfort and acceptance from others throughout the grief process is important.

Find a support group.

If you are uncomfortable talking about loss and grief with your family or friends, a support group may be an option.

Support groups provide safe environments to share experiences with other survivors, learn new ways to handle difficult situations and talk about emotions. You will see different styles of coping with stress and adjusting to life as a cancer survivor. If you are uncomfortable talking about certain subjects with your family or friends, a support group offers you a place to talk freely about what is important to you.

Cancer support groups exist in most communities.

Some ways to find out more about support groups in your area:

• Ask your health care team for suggestions. Some cancer programs offer support groups for cancer survivors and their family members right in the clinic or hospital.
• Call a nearby cancer center or university hospital and ask about support groups.
• Call the American Cancer Society at 1-800-ACS-2345 (1-800-227-2345) and request a list of support groups and cancer centers in your area.
• Visit LIVESTRONG SurvivorCare at www.livestrong.org/survivorcare, or call 1-866-235-7205 for information on support groups.

Find a counselor/therapist:

If your grief is overwhelming or if you prefer the privacy of an individual counseling setting, consider talking to a counselor or therapist.

Ask a member of your health care team for a referral to a therapist who works with other cancer survivors. Most cancer centers employ oncology social workers who are specially trained to work with cancer survivors and their families. Even if you are not a patient at a cancer center, the oncology social worker may meet with you or refer you to someone else in the community.

It is important to interview the therapist to find out if s/he is the right professional for you. Speak honestly with the therapist and let him or her know your reasons for wanting to work with a therapist.

Examples of questions to ask the therapist:

• What type of education background do you have?
• What license do you have?
• What is your experience working with people with cancer?
• What do you understand about the emotional response to this illness?
• Do you take my insurance?
• Do you work with people who are anxious? Depressed?
• Do you know community resources for people with cancer?

Practice good self-care.

Grieving an important loss can be hard work. It can create stress and anxiety that might leave you at risk for accidents, illnesses or misuse of substances (such as alcohol or drugs). Concentrate on helping your body tolerate the feelings of grief by:

• Including rest in the rhythm of your day to help replace the energy that grieving uses
• Trying to eat healthy foods daily
• Exercising in ways you enjoy

Your health care team can help you find foods and exercises that are right for you.

You may also want to create a list of things you can do to nurture yourself if you are overwhelmed by your feelings. Your list may include things like:

• Calling a friend
• Taking a hot bath
• Listening to music
• Going for a walk

You can refer to your list if you are having intense feelings or whenever you think you need a break from thoughts of your loss. As time goes on, you may add or subtract items from your list.

Be patient with yourself.

Grieving an important loss is not a single event; it is a process that happens over time. Allow the process to unfold at a pace that is right for you. You don’t need to follow a particular timetable or reach a particular goal. There is no right or wrong way to grieve. There is only what is right and safe for you.

You may never truly “get over” your loss. However, with patience, acceptance of your feelings and hope, you may find that you have learned to live with it.