Grief and Loss

Grief is a strong feeling of sadness in response to a loss. Grief and loss are difficult but natural parts of life, and they are often a part of cancer survivorship in some way. Understanding feelings of grief and loss, and finding the support you need, can help you manage the changes you are experiencing and feel more confident about your survivorship.

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

A sense of loss is experienced when something or someone that is highly valued disappears from your life. Loss is an unavoidable part of life—it happens to all of us. Grief, or bereavement, is the natural human response to loss. It is the emotional pain that is felt at the time of loss and for sometime after. Intense grief can make it hard to cope or to even take care of day-to-day responsibilities for a time. Generally, the experience of grief lessens with the passage of time.

This document will explore grief and loss from the cancer survivor's point-of-view. Loved ones and friends may also experience forms of loss that are similar to those experienced by the person who has cancer. For this reason, much of the information offered here may also be helpful to loved ones and friends.

Do all survivors experience grief and loss?

Not everyone experiences grief in the same way. Even people in the same family – or those who have similar diagnoses and treatments – may respond differently to what has happened. Grief is unique to each situation and each individual. It may differ in how long it lasts, how intense it is, and what it means. How, when, and what people grieve depends on many things such as age or stage in life, previous experience with loss and grief, and the amount of social support that is present.

Most people think about grief and loss in terms of the death of someone who has been close to them. However, people also grieve other kinds of losses such as the loss of physical ability, the end of a friendship, the loss of a valuable possession, and the inability to achieve an important goal.

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

Losses can also bring important gains. For some survivors, the gain may be so significant that what has been lost may come to be seen as not so important as it once seemed. For example, some survivors say that they are grateful for the cancer experience because it taught them new priorities around what is really important in life. However, for others, a loss may be so intense that any gains seem unimportant.

What losses are common for survivors?

Cancer survivors may experience losses in a variety of ways, and some may be easy to see and name. However, other losses can be harder to recognize. A loss may be temporary or permanent, life-altering, or a minor inconvenience. For example, hair loss from treatment can be very important to some, but less important to others. Any type of loss may be an emotional experience. The following are types of losses that might be experienced by some survivors:

The following are types of losses that might be experienced by some survivors:

Physical losses:

• A body function
• Changes in the ability to have sex
• Lessened strength or energy
• An ability or skill to perform certain activities
• Physical comfort
• Fertility
• Bodily changes such as a scar or amputation

Emotional losses:

• Sense of security and predictability such as in health and in the future
• Sense of control or independence
• Self-esteem or sense of identity
• Self-confidence
• Body image
• Goals, hopes or dreams
• Faith, trust, or deeply held spiritual beliefs
• Habits, such as changes in daily routines, or life "the way it used to be"

Social and relationship losses:

• Relationships with friends, family members or co-workers
• Sexual relationships
• Ability to have own biological child
• Loss of certain roles such as providing for the family
• Loss of other cancer survivors

Financial losses:

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

What symptoms come with grief?

Grief rarely follows a straight or predictable path. However, patterns in the grieving process are generally recognizable. It often begins with a brief period of shock that comes after learning about the loss. There may then be a period of denial during which there is a problem believing that there has been or will be a loss. In many cases, the emotions of anger, deep sadness or fear follow the period of denial as one comes to recognize that a loss has occurred.

Recognizing, accepting, and releasing the feelings that come with the pain of loss can be difficult. However, this prepares the way for coming to terms with what has happened and adjusting to a new reality.

Each survivor’s experience with grief and loss is different. A survivor may have all, many, or only a few of the following types of feelings and reactions, and they may be experienced in any order. These types of feelings can be low-key, intense, frequent, or infrequent. Common signs of grief include:

Strong feelings:

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

Bodily reactions:

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

Changes in behaviors:

• Withdrawal
• Lessened productivity
• Hyperactivity
• Increased need for reassurance
• Changes in sexual patterns (more or less)
• Attention getting
• Aggressive behavior such as being demanding or physically aggressive

Changes in thinking:

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

Knowing that these kinds of grief responses are common can help you understand your situation better. With time, grief responses usually become less intense, last a shorter period of time, and happen less frequently. However, you should talk to your health care team about any physical and long-term emotional symptoms that do not go away.

The grieving process can bring problems if you begin feeling confused or overwhelmed. If this happens, ask your health care provider to refer you to a licensed counselor who has experience helping survivors with the grieving process. The following questions may help you sort out whether or not you could benefit from extra support: 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 specific losses?
• Do you respond to comfort and support from others?
• Can you directly express difficult feelings such as anger or sadness?
• Can you still find and experience enjoyment in life?
• Are you able to seek and get relief from your physical complaints?
• 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 some or most of these questions, or if you are uncertain about how you are coping, ask your health care team for help.

When might a survivor experience loss and grief?

Cancer survivors can experience loss and grief during treatment, during recovery from treatment, and months or even years following completion of treatment for reasons such as the following:

• It can initially be a shocking experience to be diagnosed with cancer.
• During the experience of diagnosis and treatment, time and energy may be directed toward coping with the immediate crisis. This is the time when survivors must choose the health care team, learn about and decide among treatment options, and get through the treatments. This is a time when it is common to put off recognizing and dealing with losses.
• When treatment has ended, there may be time and energy to focus on emotional responses to the experience of cancer. This is a time when unexpected reactions of grief to losses can surface.

Reminders of the experience with cancer can bring up grief even years after treatment has ended. The following are examples of things that can trigger such emotions:

• Sensory reminders such as certain tastes or odors
• Medical appointments, even those that are routine
• Hearing about someone who has been diagnosed with cancer or who has died from cancer
• Anniversary events such as date of diagnosis or date of going off treatment
• Important events with family or friends such as weddings, graduations, birthdays, and holidays
• Experiencing ongoing losses because of the aftereffects of treatment

Grief is not a single event--it occurs over time. Like waves in the ocean, grief comes and goes as you understand and appreciate various aspects of loss. The amount of time you grieve can vary. 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. However, if grief lasts for a long time, and you feel that you are unable to resolve your grief, talk with your health care team.

Can grief cause a recurrence of cancer?

Grief does not cause cancer, and it cannot make your cancer return. Grieving is often painful, but it is a normal process that occurs as you cope with the losses and changes that come into your life. However, it is important to 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 having a difficult time. They can provide referrals to professional counselors who can help you understand and deal with what you are feeling.

Why is it important to talk with others about the feelings of loss and grief?

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. 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 might believe that you should be feeling gratitude, not grief. It can be hard to acknowledge loss and grief when others see you as a winner and someone who should be grateful to be alive, regardless of what has happened.

Grief can also be hard to acknowledge when friends or families are not able to listen to or deal with the intense feelings that grief can sometimes bring. If your friends or family members act like they do not want to talk about your experiences of grieving, it may be that they may not know how to deal with intense or uncomfortable emotions. They may really want to help you, but do not know how to be there for you.

Some people may not be aware of the importance 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 do not expect them to make everything better--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. You may be able to find good listeners and support among loved ones, friends, your health care team, licensed counselors, support groups, clergy or members of your faith-based organization.

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

Works Cited

Heegaard, Margaret. When Someone Very Special Dies. Minnesota: Woodland Press, 1988.

Keene, Nancy, Wendy Hobbie, and Kathy Ruccione. Childhood Cancer Survivors: A Practical Guide to Your Future. Cambridge: O’Reilly & Associates, 2000.

O’Toole, Donna. Growing Through Grief. Burnsville, NC: Mountain Rainbow Publications, 1989.The American Heritage Dictionary of the English Language. Boston: Houghton Mifflin Company, 1992.

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Grief and Loss: Suggestions

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. 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 Additional Resources document for links to more resources.

• 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.



• 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.

  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. 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.
    • Visit LIVESTRONG Cancer Navigation Services at LIVESTRONG.org/GetHelp, or call 1.855.220.7777 for information on support.



• 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 type of 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 might include things such as:
  • 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.

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Grief and Loss: Additional Resources

The previous sections of this document provide detailed information, suggestions, and questions to ask related to this topic. This section offers a listing of additional resources that are known to provide support and quality services that may be helpful to survivors during the cancer journey.

LIVESTRONG Cancer Navigation Center
www.LIVESTRONG.org/GetHelp

Email:	Cancer.Navigation@LIVESTRONG.org
Phone:	1.855.220.7777 (English and Spanish)
	Navigators are available for calls Monday through Friday, 9 a.m. to 5 p.m. (Central Time). Voicemail is available after hours.

The Navigation Center provides free, confidential one-on-one support to anyone affected by cancer. This is not a medical facility, but rather a center that provides the following support services:

• Emotional Support—assistance coping with a cancer diagnosis, help accessing support groups, as well as peer-to-peer connections
• Fertility Risks and Preservation Options—information on fertility risks and help accessing discounted rates for fertility preservation options
• Insurance, Employment and Financial Concerns—information on employment rights and benefits, financial assistance and debt management, including insurance and billing issues as well as medication co-pay assistance

In addition to professional cancer navigators on staff, LIVESTRONG partners with specialty organizations such as Patient Advocate Foundation, Imerman Angels, Navigate Cancer Foundation and EmergingMed to provide support services.

American Cancer Society (ACS)
www.cancer.org

Email:	Submit questions in English or Spanish from the “Contact Us” page.
Phone:	1-800-227-2345
	TTY for deaf or hard of hearing callers: 1-866-228-4327

The American Cancer Society (ACS) offers information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area. ACS can connect you to support and services in your area. You can join online groups and message boards. Some information on the website is available in Spanish, Chinese, Korean and Vietnamese. ACS specialists can answer questions 24 hours a day by phone or email.

American Psychosocial Oncology Society (APOS)
www.apos-society.org

Email:	info@apos-society.org
Phone:	1-866-276-7443
	Voicemail is available after hours. Messages will be returned within 24 to 48 hours.

APOS works to ensure that all people with cancer have access to psychosocial services as a part of quality cancer care. They provide mental healthcare referrals to local counseling services throughout the United States. If no services can be found in your community and there is an immediate need for help, a professionally trained Helpline staff member will provide crisis counseling over the phone. Counseling sessions will be scheduled at the discretion of the Helpline counselor. To use this service, call the toll-free number.

Cancer Hope Network
www.cancerhopenetwork.org

Email:	info@cancerhopenetwork.org
Phone:	1-800-552-4366
	This number is answered Monday-Friday, from 8:00 a.m. to 5:30 p.m. (EST). Voicemail is available after hours.

Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. They offer support by matching cancer patients or family members with trained volunteers who have already undergone and recovered from a similar cancer experience. You can submit your request by phone or by email. A volunteer will try to contact you within 24 hours.

National Register of Health Service Providers in Psychology
www.findapsychologist.org

Email:	support@nationalregister.org
Phone:	1-202-783-7663

The National Register of Health Service Providers in Psychology sponsors this free psychologist referral website to promote consumer access to more than 12,000 professionally screened psychologists in the United States and Canada. This site also contains frequently asked questions about getting help, web links and resources on behavioral health care issues for consumers.

National Cancer Institute (NCI) — National Institutes of Health
www.cancer.gov

Online:	The LiveHelp online chat service is available Monday through Friday from 8:00 a.m. to 11:00 p.m. Eastern Time.
Email:	Send an email through the website.
Phone:	1-800-422-6237
	Information specialists answer calls Monday–Friday, 8:00 a.m. to 8:00 p.m. Eastern Time.

The National Cancer Institute's website provides accurate information about the challenges cancer can bring. You can search for information by cancer type or topic. You can find information about treatment and financial and insurance matters. You can also learn how treatments in development work and search for a clinical trial in your area. This site also has a good dictionary of cancer terms, drug information and other publications. Cancer information specialists can answer your questions about cancer and help you with quitting smoking. They can also help you with using the website and can tell you about NCI’s printed and electronic materials. The knowledgeable and caring specialists have access to comprehensive, accurate information on a range of cancer topics, including the most recent advances in cancer treatment. The service is confidential, and information specialists spend as much time as needed for thorough and personalized responses.

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