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Your Cancer Survival Kit

The tools you need to make the best decisions about your cancer care

by Amie J. Harris, MSW, LCSW, CT, AMP, and Maria A. Caruso, MS, LPC, CT, NCC

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A cancer diagnosis often comes without warning. Symptoms can disguise themselves as everyday illnesses, like a cold, and are self-treated or ignored. Unfortunately, cancer has a way of eventually disclosing its presence. Suddenly you are rushing to the doctor, having tests done, and being given probably the most devastating news you have ever heard – that you have cancer.

It’s during this traumatic time that listening to all the information is critical. However, the fear, anxiety, and disbelief that accompanies the diagnosis often overpower what is being said, and you often miss important information that will enable you to make difficult decisions about treatment and finding the right doctors. It’s during this initial information-gathering phase that tools to aid in decision-making should be assembled. You need a cancer survival kit.

A cancer survival kit contains plans, options, people you trust, and a mindset that will empower you to walk this journey. You will encounter many people who have been in your place who want to share their experiences and give you advice. All of this can be very informative but not necessarily helpful. What worked for someone else may not work for you, and the amount of information you will receive can often become overwhelming and cause confusion.

The first tool in your survival kit is your healthcare team.
Finding a doctor with whom you are comfortable is critical. Your comfort level with your doctor is as important as the credentials and the experience he or she has. Different criteria are important to each person in selecting a doctor. When assembling your treatment team and creating a plan of action, you may want to get a second or even third opinion. Your treatment plan should address the issues that are important to you and provide for your own unique needs.

The language that doctors use can often seem scary. Understanding exactly what is being recommended to you will help to put your mind at rest.

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Amie Harris and Maria Caruso

The second tool is your medical journal.
This journal will help you keep track of questions about symptoms and other concerns. Bring it with you every time you see a doctor. This will be very useful in relaying and recalling information; relying on your memory is not recommended. It is also a good idea to have someone accompany you on doctor’s visits so they can listen with you.

The language that doctors use can often seem scary. Understanding exactly what is being recommended to you, how procedures will be done, how long treatments may last, and other aspects of the treatment process will help to put your mind at rest. Additionally, knowing the possible side effects and limitations that may occur during treatment and its aftermath helps eliminate catastrophizing, or the irrational belief that something is far worse than it actually is. The unknown is far scarier than the known.

One of the most important tools in your survival kit is your caregiver.
Find someone you trust, and keep in mind that one of the key elements in choosing a caregiver is knowing that person is available and comfortable with the responsibility. Loving someone does not mean he or she is the best caregiver for you. Choosing a caregiver often causes some distress. Expectations of what loved ones can and should be able to handle are often false.

If you have a large family or support system, caregiving can be split up among several family members and friends. For example, one person can escort you to doctor visits, another may help you with your children, and another can file the insurance forms.

Role changes usually occur within the framework of families during the course of the disease. Defining new roles or changing roles is often necessary. It is best to address these changes in an open, communicative fashion. If the changes in roles are not discussed and realistically orchestrated, these changes can create unnecessary distress.

There are many sensitive issues, such as employment, finances, and family responsibilities, that need careful consideration. Taking the time to decide whom you will need to include in your survival kit will give you peace of mind. Try not to worry about hurting people’s feelings with your decisions. If someone is to be helpful, that person needs to be helpful in the way you need him or her to be. Once your survival kit is complete, you can walk this journey with a sense of emotional security and independence.

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Amie Harris is the founder and Maria Caruso is the managing director of Living with Dignity™, a nonprofit organization that provides programs and individual and group therapy in Morris County, NJ. For more information, visit cancercounseling.org.

This article was published in Coping® with Cancer magazine, May/June 2009.