Cancer Research: Information from a Patient / Caregiver Perspective

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A Patient's Perspective on Grief

Published with permission by VIHA (Vancouver Island Health Authority).

When you face your own death, you grieve.

This means you will have a wide range of thoughts, feelings, and responses over the course of your illness. Your reactions may be so strong that you feel frightened or overwhelmed – this is quite normal. It helps to be prepared for them, because these reactions will be a necessary part of your grieving.

However, there are things you can do and learn about, that will make it easier for you to cope. For example, you may need to have someone you trust to talk to, who will let you express your feelings without judging you, giving you advice, or trying to cheer you up – unless that’s what you want.

Sometimes, the very people you most want to trust and who most want to understand what you are feeling, will simply not know how to do that. A Hospice Counsellor can talk with you and your family about ways of keep communication channels open between you, and about ways you can help each other.

Remember, “taking care of yourself” means more than just taking your pills and following your doctor’s orders. It means giving yourself permission to reach out and use the services and supports that are available to you.

The following information can help you understand normal reactions to grief, and offers some ideas to help you cope with them.

Social

As your roles and responsibilities change, you may experience a sense of loss and low self-esteem. Your former activities and interests may not be available to you. You may withdraw from social contacts, or need company but find it difficult to ask. You may be frustrated by the expectations of those around you.

Suggestions:

• Try to see your illness as a series of losses, and expect to grieve each one of them. This will allow you to plan for emotional support and added care as your lifestyle changes.

• Being with others can help you feel part of things, even if it doesn’t relieve the loneliness you might be feeling.

• Try to be specific about what you want from them when you do reach out to your family and friends. Being clear helps you avoid much of the disappointment, frustration, and rejection you may feel when you are misunderstood. Remember, no matter how much people love you, they still can’t read your mind.

• Be open to discovering reserves of strength in yourself and your loved ones that you didn’t know were there.

Body

Adjusting to changes in your physical well-being, energy, and appearance is often difficult. Losing your independence may make you feel self conscious, angry, anxious, and confused about your new and unfamiliar self-image. If you have pain, your sense of not being in control of your body may increase.

Suggestions:

• Give yourself permission to be as free of pain as possible. Sometimes your beliefs about how much pain you ‘ought’ to be able to handle will get in the way of good pain management.

• Knowing what to expect as time passes may help you plan for physical changes ahead of time. You do have a right to have your questions about your illness or prognosis answered. Be aware though, that definite answers are not always possible and predictions are not always wise. Talking about your feelings can help you deal with this uncertainty.

• It is important to have some people with whom you can be honest about your physical symptoms. Sometimes how you look is not how you feel, but you may not be comfortable sharing information about your physical condition with everyone.

• Consider relaxation techniques, therapeutic touch, massage, or guided imagery to help you feel a sense of inner peace.

Feelings

You will have a variety of feelings, and you may have acute upsurges of emotion. Anger, sadness, depression, and guilt are common and natural for you to feel. You may be irritable and easily frustrated. Old feelings, issues, or unresolved conflicts may rise to the surface. You may be anxious or fearful about yourself and others, and worried about your family’s future.

Suggestions:

• Find comfortable, non-destructive ways to express your emotions. Keeping strong emotions under control is difficult when you feel vulnerable, and it takes a lot of energy to keep them bottled up inside. A counsellor can often help you accept and manage your emotions at this difficult time.

• Trying to protect others from the way you are feeling is frustrating for them and not helpful for you. Remember, family and friends will often take their cues from you about which emotions are acceptable.

• Share your feelings if you become angry and fearful of being ‘replaced’ as other people take over the chores and responsibilities that once were yours. Together, you may find ways of changing or sharing tasks so you can still contribute and have some control in your life.

• Remember that your experience is yours alone, and that all your feelings are valid simply because you have them.

Thoughts

The stresses of your illness may interfere with how your mind works. Your memory and concentration might be poor, and making decisions might be difficult. Sometimes you may feel a sense of unreality or think you are going crazy. Switching between acceptance and denial of your situation is quite natural. You may be preoccupied with thinking about how you will die, or about being a burden to your family.

Suggestions:

• Sometimes just accepting that this is a stressful time for you helps you to put things in perspective.

• Be patient with yourself. Take time to think things through before you make choices.

• Ask for help if you’re having trouble, feel confused, didn’t understand, or if your thoughts are upsetting.

Spiritual

You may find that you are questioning your beliefs, searching for meaning in your life, or looking for spiritual peace. Hoping for miracles may change to looking for the hope in each day. Mourning for your hopes and dreams is a normal and important part of grieving.

Suggestions:

• Give yourself permission to ask questions about spiritual issues and beliefs if you now feel unsure. Doubts and questions about long-held spiritual beliefs are normal at this time.

• Let yourself accept counselling and comfort, as you need it.

• Forgive yourself and others for past hurts, disappointments, and lost opportunities. Remember, it often helps to talk to someone if you are concerned about your reactions. A Victoria Hospice Counsellor or our Spiritual Care Coordinator can discuss matters with you.

Click here to download a pdf version of this article.

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