The Emotional Journey of Cancer and How to Develop a Cancer Survival Kit
Thursday, January 21, 2010
By: Amie J Harris, MSW, LCSW, CT

                            The Emotional Journey of Cancer

For a patient and their family the experience of dealing with cancer is like riding a roller-coaster. First, the difference between the two is that riding a roller-coaster is a choice; and secondly the expectations of the ride are predictable. The psychological effects of cancer arrives from the moment of diagnoses, continues through treatment and waxes and wanes throughout the lives of all those involved. Because there are so many unknowns and so much information to learn, both the patient and family may begin to feel fearful, insecure and anxious. These feelings are very normal, but very uncomfortable. One of the most important ways to cope with these feelings is to ask questions and become knowledgeable about your condition and treatment. This will empower you and create a sense of control. Cancer creates immediate changes to all facets of our life, and although change is part of living, we generally want and feel more secure when we are in control of those changes.

Loss of control even for a temporary period of time can make anyone experience fear and apprehension. This issue is very important to understand because a lot of people immediately think they are weak if they are afraid. It is nowhere written that strength in character and experiencing fear is mutually exclusive. In fact, there would be no such thing as courage, which means the ability to face fear. One way to overcome and approach fear is to do the opposite of what fear tells you. This is a technique that decreases the intensity of the fear and builds confidence in dealing with things you want to avoid. Accepting that your emotions are not only going to surface, but will affect your behavior and others is important to reconcile. A humble person is one who allows his or her self to be human and experience what are normal and common feelings associated with crisis. Cancer is an emotional tsunami. The trauma and shock that first invades and paralyzes eventually subsides and gets replaced with a myriad of other feelings. It is very stressful and unhealthy to “stuff” or internalize fear, anger, anxiety and sadness. These emotions need to be expressed.

To those of you who have been diagnosed, and your caregivers I want to further emphasize that while cancer changes our lives, it doesn’t change who we are as people. People commonly think that cancer will somehow change how we cope with our problems. Unfortunately, that is not always true. Who a person was before cancer is who they are during cancer. Yes, there are people who do have epiphanies, but it is unrealistic to expect that a person can change in the middle of a life changing event. If anything the character flaws of the person with cancer and their loved ones can be exacerbated due to the stressors of the situation. The reason for this is because the homeostasis has been interrupted and there is a feeling of not being grounded. People have images of themselves and the roles they play both in their personal and professional lives. This all gets shaken on that roller-coaster, and it is important to understand that pride and self-esteem become extremely sensitive issues for the person with cancer and their loved ones. The identity of who we are and everything that once was familiar is now surreal and one feels disconnected to our previous lives and all that was in it.

Cancer patients often worry about being a “burden” to their loved ones. That is why it is important to discuss openly as a family and if necessary, seek professional guidance to eliminate these worries. The changing of roles in a family can be a particularly difficult issue, especially when you have been self-reliant and autonomous. On the other hand, family members fear being overwhelmed with added responsibility, juggling children or elderly parents, etc. The resolution to these concerns is to explore what roles you can take on and those you can’t. Have reasonable expectations of others and yourself and allow room for flexibility. Cancer is a disease that affects the whole family. Sitting down with your loved ones and creating a written plan and even if it is temporary will alleviate the problems and create immediate order.

Crying is a necessary and healthy way to release feelings. People struggle with this because they are afraid they will “fall apart”. If you don’t allow yourself to cry, you will fall apart. Crying is our psyche’s way of letting go. It is a natural, biological release valve that cleanses us in times of distress. Again, don’t mistake this for weakness. Our tears are a way of healing the pain we are feeling inside. Even if it’s just for a moment, the more you release, the more control you will have over your feelings, as well as enjoy more intimacy and closeness with the people you love.

                                            Cancer Survival Kit
A cancer survival kit contains plans, options, people you trust and a mindset upon which you can walk this journey. It is important to bear in mind that there are many people who have been in your place who want to give you the benefit of their experience including the names of doctors or hospitals they went to, drugs prescribed to them, etc. This can all be very informative but not necessarily helpful. The amount of information you will receive can often become confusing and overwhelming. Be careful, try to keep the initial journey simple by who you tell and what you tell them about your diagnosis.

It is during this traumatic time that you need listen to all the information you are told; however, you are so filled with fear, anxiety and disbelief that you can’t hear what is being said. Information about the type of cancer you have treatment and other pertinent information which will enable you to make difficult decisions, fully need to be heard and understood. It is during this time of initial diagnosis that you need to develop a cancer survival kit – tools that will aid you in your decision making.

The first tool in your survival kit is finding a doctor with whom you are comfortable. This selection process, whether it be a surgeon or oncologist, is critical. Your comfort level with your doctor(s) is as important as the credentials they bear and the experience they have in the field. Remember that your needs are unique to you. You may prefer a doctor who is warm and fuzzy, but may lack the expertise and state of the art resources as compared to a doctor who may be clinical and have not much of a bedside manner. The bottom line is who is going to get you well. In an ideal world it would be wonderful to have both attributes, so it is up to you to decide what is best for you.

There are different things that are important to a person in selecting a team of doctors. Yours maybe entirely different than your friends. You are not hurting anyone’s feelings but your own if you don’t follow your own gut feelings and heart. Many people wish they had gone for a second or third opinion. Treatment should be based on the things that are important to you.

The second tool is starting a medical journal. This journal will enable you to keep track of your questions regarding symptoms and concerns. Bring it with you every time you go to a doctor. This will be very helpful in relaying and recalling information – relying on your memory is not recommended. However, it is advisable to have someone accompany you on doctor’s visits so that they can listen with you.

The language doctor’s use can often seem scary. Understanding exactly what is being recommended to you, how procedures will be done, how long treatments may last and so on, are all important factors that will help to put your mind to rest. Additionally, knowing the possible side effects and limitations that may occur during treatment and its aftermath eliminates what is called catastrophizing. The unknown is far scarier than the known! Questions about continuing to work or going on disability are critical decisions, especially in the beginning. This part of your survival kit needs to be addressed so that you can be free to concentrate on your health. If not already addressed, putting your finances in order will create a sense of security about how you will proceed in the task of daily living.

The third tool is probably one of the most important decisions in your survival kit and that is choosing a caregiver. Decide on 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 that they are the best caregiver. Often this area is where distress takes place.

Expectations of what loved ones can and should be able to handle are often false. If you have a large family or support system, care giving can be split up among members. One person can escort you to doctor visits, another may help you with your children, and another can file the insurance forms, etc.

Role changes usually occur within the framework of families during the course of the disease. Defining new roles or changing roles is helpful if addressed in an open, communicative fashion. If the changes in roles are not discussed and realistically orchestrated, these changes will create unnecessary distress and havoc.

The fourth tool is to embrace a mindset, like a philosophy you may have already, but one that can keep you grounded and in the present the one that I recommend to patients is that “this very moment is the perfect teacher”*. Each feeling and experience that you have can be used to learn about yourself. In order to prevent panic, depression, and distress one needs to embrace that how we think controls how we feel and then how we act or behave. Therefore, it is very important to look at what you are saying, for example stay away from the “what if’s, could have’s and should have’s”. These phrases will only distort your reality and are very punitive. Try to embrace being mindful and compassionate to yourself. The diagnosis and treatment is temporary. Cancer is a disease, not an illness, therefore you are not sick but fighting a disorder. When you do not feel well due to treatment or the ordinary things like colds or allergies, try to remember to not panic, but realize that people with cancer still get all the ordinary illnesses of life.

Depending on your beliefs, whether they are spiritual or religious every loss in our life has a gain. The loss of health can bring gifts in ways you may never have expected or believed. Life can be looked at as one big lesson or chapters in your book. This is the most important coping tool in facing cancer. Your emotional immune system will be the greatest warrior against your disease and always respect and honor how you feel and that “your best is good enough and will change every day”**. Just like a river has calm and then rushing water so will be your journey.

As discussed, there are many sensitive issues like employment, finances, family responsibilities that need careful consideration. Taking the time to decide who you will need in your survival kit will give you peace of mind. Try to avoid thinking that people’s feelings will be hurt with your decisions. If someone is to be helpful, they need to be helpful the way you need them to be and you need to accept at the same time the limitations of each person and yourself. Once your survival kit has been completed, you can walk this passage with a sense of emotional security and independence.

*Comfortable with Uncertainty Chodron, Pema p.96
**The Four Agreements Ruiz, Miguel p.75

Author : Amie J. Harris LCSW
Amie J Harris, MSW, LCSW, CT has been in private practice for eighteen years and specializes in the treatment of cancer patients and their families. She is the founder of Living With Dignity™, a non-profit organization that provides programs and individual and group therapy. This article is dedicated to my late husband, Dr. Robert G. Harris who died of sinus cancer on December 30, 2001.

You can learn more about Ms. Harris here on the Directory.