Ellen Fein is a Licensed Clinical Social Worker. She has spent more than 20 years working in the mental health field, with much of that time spent as the CEO of a rural mental health center. For several years, she worked as an independent consultant for behavioral health organizations and the National Council of Community Behavioral Health. She has written several professional books and conducted training, consultation, and project management in such areas as board training, CEO recruitment, and organizational development. As a result of her husband's illness and death, and then her own experience with cancer, she now works as a Cancer Coach, with an emphasis on mind-body medicine, supporting individuals living with cancer, and writing and speaking as well. Ellen resides in Montpelier, Vermont with her daughter Becky Goldfinger-Fein and her Tibetan Terrier, Kasha.
INTRODUCTION
The Things You Need to Know That No One Tells You About Living
When you are diagnosed with a life-threatening illness, it is all too easy to find yourself transformed into a "PATIENT." You seem to lose your identity.
My experience during my husband's bone marrow cancer, and now my own, convinced me that you CAN have a life. You can retain much of the identity you had before you were ill, and as important, you can exercise a surprising amount of influence over and control of your treatment and treatment environment.
This guide is based on the following assumptions:
* Each person must pursue healing in a way that fits with who he or she is. What is the right choice for one patient may not be the right choice for someone else.
* In the end, only the patient is in a position to make treatment choices. Opinions from those who care and data from providers may be useful, but the patient has to choose treatment.
* Health care providers tend to focus on symptoms, blood counts, tumor markers, etc. Their attention is, most often, medical intervention and NOT quality of life.
* The patient can do a great deal to maintain that quality of life throughout treatment and during the course of a life threatening illness.
* The suggestions in this guide are just that --suggestions. Some may seem helpful to the reader and others may seem way off base. I invite you to use what you want and disregard the rest.
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Taking Care of Yourself
While you may turn over some important aspects of your health care to your doctor or health care provider, only you can attend to some key aspects of your health. When you do not feel well, it is easy to get overwhelmed by your own sense of illness. You can lessen this feeling and increase your sense of well-being. There are things that you can do that will help you face whatever is in front of you.
The Emotional Side
You will undoubtedly experience a wide range of feelings when you are diagnosed and as you live with your illness. Extreme feelings are a normal response. Sometimes, it can seem as if you are on an emotional roller coaster. Finding some balance can be very challenging. Living with lots of intense emotions may very well be part of your life now....
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Medical Information
Deciding How Much You Want to Know
For some of us, getting information helps us cope. For others, it can be over- whelming or too discouraging. What is going to be most helpful for you? Each of us has to figure that out for ourself. Not an easy task when everything is so unknown and unpredictable. As early into the process as you can, think about how much and what type of information you want.
Do you want to know the survival odds? If the odds are not in your favor, how do you think it might affect you? Could it make you feel doomed? Will you be able to see that the numbers, while useful, are only just that? Numbers.Are you going to want to have choices or would you prefer a single recommendation from your doctor? Some individuals feel empowered by gathering a lot of information and making a selection while others can be completely overwhelmed by needing to make decisions....
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Living In the Hospital
IV Pumps. While these pumps are great for feeding medications into your body, their alarms can quickly become a dreaded aspect of your hospital stay. The alarm sounds when medication is done and needs to be stopped or changed. However, the alarms have a tendency to go off at a lot of other times and often. The alarm has a way of repeatedly going off as soon as the pump is "fixed" and the nurse leaves the room. You can be waiting what seems like any incredibly long time for a nurse to come in and turn it off. This is especially troublesome when you are trying to sleep. Fortunately, the pump alarm has an "off" or "silence" switch. In my experience, most nurses are happy to have you silence the alarm as long as you call them so they can come back and check the pump and restart it. If the alarm problem continues, ask the nurse to find another pump. For some reason, these pumps are just temperamental.
Clothes. Bring your own. There is no greater indignity than having to walk around in a "Johnny" with your backside hanging out. Bring pajamas, sweat pants and/or a robe that make you feel good and comfortable. Use slippers and avoid bare feet. Hospitals are incredible sources of infection and foot protection can help. Bring comfortable street clothes and put them on any time you are well enough to get out of bed for more than a few minutes. There is something empowering about wearing your own clothes. When I felt up to it, I found wearing a little jewelry and putting on makeup helped.
