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Acknowledging the Grief and Loss of the Cancer Journey

by Kathy Allen, LSW, OSW-C

Wellness image

Receiving a diagnosis of cancer is a life changing experience for most people. Like Dorothy during the twister in The Wizard of Oz, you are tossed and turned, not knowing where you are going to land. The whirlwind of doctors, appointments, tests, information, and decisions often causes confusion and the feeling of being overwhelmed. This is especially disconcerting because, prior to diagnosis, you were living your day-to-day life never expecting to find yourself standing on the edge of a very scary cliff.

There is one aspect of coming to grips with a diagnosis of cancer and subsequent treatment that is often overlooked. That is the cancer journey involves dealing with a multitude of losses – losses that need to be acknowledged and grieved. This sounds strange to many people since we most often equate loss and grief with death. However, when you step back and look at the cancer journey, you realize that loss and grief are part of that storm of emotions that is churned up.

Loss of a Sense of Well-Being
Many cancer survivors have never experienced a major illness or are diagnosed at an age when illness is much unexpected. This can lead to a feeling of being betrayed by the body. Even if you have some experience with illness, the uncertainty of cancer creates a loss of a sense of security.

Loss of Self-Image
Many survivors undergo physical changes during cancer treatment through surgery, chemotherapy, and radiation. These changes in the body do not fit the image that people have of themselves. It is also a constant reminder that this major life change called “cancer” has occurred.

Loss and grief are part of that storm of emotions
that is churned up.

Author of Article photo

Kathy Allen

Loss of Role
Everyone has many roles in life: spouse, parent, employee, professional, friend, neighbor, breadwinner, just to name a few. Perhaps you were the first one to arrive at work and the last one to leave. Perhaps all of the kids in the neighborhood hung out at your house. Now, because of cancer and treatment, you can’t keep up those hours at work. You can’t tolerate packs of kids at the house or be exposed to the germs that children routinely carry. This is often a painful loss for survivors, even when it is temporary.

Loss of Expectations of How Life Should Be
No one includes cancer in their life plan. People plan for their families, their career, building a house, retirement – never a life-threatening illness. While we all know that bad stuff happens, we never really expect it to happen to us. This requires a major adaptation.

Loss of Control
One of the biggest issues for many cancer survivors is the loss of control. A survivor goes from being in charge of his or her life to turning his or her life over to essentially total strangers – the healthcare team. The consistent uncertainty of the cancer experience also emphasizes this loss of control. Just when you think you know what to expect, it changes.

This is by no means an exhaustive list of losses that need to be grieved during cancer treatment. So what do you do to come to grips with these varied losses and the grief associated with this journey?

Foremost, acknowledge your feelings of loss. They are normal and you are normal for feeling them. Next, find a way to express these feelings by sharing with loved ones or other survivors, attending a support group, writing in a journal, praying, or speaking with an oncology social worker.

Finally, be kind to yourself and cut yourself some slack. This is no time to be a perfectionist. Adapting to and coping with cancer and treatment is a process. It is not something that occurs once and then you are “adjusted.” Just like any other journey, there will be bumps in the road, detours, hills, valleys, and flat road. Every day will be different, and every day you will do what you need to do to get through.

♦ ♦ ♦ ♦ ♦

Kathy Allen has been an oncology social worker for over 18 years. She currently works at York Cancer Center in York, PA, conducting patient navigation, individual and family counseling, advocacy, support groups, and educational programs for cancer survivors and healthcare professionals on issues of coping and grief.

This article was published in Coping® with Cancer magazine, July/August 2011.