KEN AND MAGEE COOK’S

· TAKE CHARGE OF YOUR ILLNESS This is YOUR illness - learn all you can about it You must be your own advocate Don't be submissive to your doctors Question everything and ask how to spell words and drugs that you don't know Carry a notebook with you EVERYWHERE and write it down! Or ask to be allowed to tape doctors' visits so you can review at your leisure and identify questions for next visit- most doctors are more than willing to do this AND don't be intimidated by the varied names of drugs ( some have two names or more that are interchangeable ) - get their spelling and how they are to be used BEFORE you leave the doctors office Go to another doctor for a second opinion ( almost all insurance will cover a second opinion ) Tests, x-rays, clinical medical reports belong to you - ask your doctor for them and take them with you ( only his notes belong to the doctor )

· BELIEVE AND GO WITH YOUR INSTINCTS

When that little voice inside you tells you "this is wrong", believe it When your doctor does not make you feel totally confident in what he is doing CHANGE DOCTORS When you walk away from your doctor's office and you feel uncomfortable with what he has said CHANGE DOCTORS

· ACCEPT THE DIAGNOSIS, REJECT THE PROGNOSIS

When told it's this kind of cancer, accept it, find a way to work with it! BUT , When told you have "so long" to live, reject that prognosis; insist on hope!

· BECOME EDUCATED AND INFORMED ABOUT YOUR CANCER

American Cancer Society has lists of free publications American Cancer Society (ACS) = 1-800-ACS-2345 (National Phone Line) National Cancer Institute (NCI) has a list of free publications and volunteers to talk with National Cancer Institute (NCI) + 1-800-4-CANCER NCI is the US Governments' main agency for cancer research and information and all publications from them are free and may be copied or reproduced without permission Be very careful of where you get your information as there are lots of "quacks" out there (on Internet as well as other places) When in doubt about something you have heard call your doctor or ACS or NCI Ask the National Cancer Institute to send you the "PDQ" for your type of cancer Books that can help you: "The Alpha Book on Cancer and Living" by the Alpha Institute "Cancer Manual" by American Cancer Society

· DOCTORS AREN'T GOD

Your doctor should take the time to discuss with you and explain over and over what he proposes to do and why and the effects of the protocol on you until you understand TOTALLY Don't ever be intimidated by a doctor (remember they get dressed and undressed just like you!) If your doctor thinks he is God - CHANGE DOCTORS When your doctor says don't worry because you don't have to know all these things or understand them - HE IS WRONG Understanding is Power and power improves your chances of survival (However, only YOU can determine how much and what kind of information you can handle right now. You ARE ALLOWED to change your mind at any time, it's your life!)

· IDENTIFY AND USE PEOPLE AND GROUPS TO SUPPORT YOU DURING YOUR ILLNESS

Look for support groups that fit your needs(there are several kinds of groups, some are for cancer patients, some for long-term survivors, some for family & friends. Some groups are mixed diagnoses, some are specific. Some groups are medical based & informational, some are supportive and more therapeutic. find out wha tkind of groups are available to you & try them all out till you find the right one or two for you). Don't forget to thank your support group members for all they do Don't be surprised if initial supporters begin to fade away after two months. Cancer is a long term disease and people have other things to do Hopefully you will have few good friends and family to support you throughout your illness Cherish those who stay faithful to you and let them know how important they are to you and you love them Friends & family WANT to help but don't always know how. You will have to giude them, gently, as your needs change

· ACCEPT HELP, YOU CAN NOT DO IT ALL BY YOURSELF

Helps comes in all forms and from all directions People really want to help so when they ask what can I do for you - HAVE A LIST- If you have trouble accepting help, please remember that you would want to do the same. Also you have built up an emotional bank account throughout you r life, now is the "rainy day" ·

DON'T ENDURE CANCER PAIN

Call ACS and NCI for books on controlling pain If your doctor is not working with you to control pain QUESTION WHY NOT Make your doctor give you adequate pain management You don't have to live with pain If he prescribes morphine TAKE IT- it is a futile waste energy worrying about becoming an addict or physically dependent Discuss with your doctor how to take you pain medicine- most work better when started early before pain becomes severe. It is not the time to "be strong" this is self- defeating

· BE SURE THAT YOU CARE GIVERS ARE ALSO CARED FOR

Your care giver(s) need time to get away from cancer They need rest and a release from the stress of taking care of you. Give them time away from you They need time to just be themselves and do their thing They need lots of indications that you really need them Remember that your care giver(s) aren't trying to control they just want to take as much off you as they can Your caregiver cannot read your mind & wastes a lot of precious energy trying to decipher how you feel today. Tell them (kindly, if possible...)

· LEARN HOW TO REST AND MEDITATE

When you have a cold you rest, when you have cancer you rest - remember that rest is good For some meditation is listening to a favorite piece of music while relaxing in a favorite chair, others may journal, visualize, get a back rub, soothing bath oil, praying, etc.) Listen to your care giver when they say you are looking tired - agree with them and take a rest (Caregivers take the same advice!) Points to focus on when relaxing: jaws, shoulders, stomach/gut

· LEARN TO SAY "NO"

Just say "No" No explanation needed but you could add " I won'/can't see my way to doing that" or "No, I'm sorry" or "No, I can't make that comittment right now" You don't have to do and be what everyone expects of you Stop trying to live up to other people's and your own expectations for yourself You are fighting for your life; to hell with what other people expect of you Take time to reevaluate what is really important in life Throw out of your life what is really not important

· MAKE POSITIVE THINKING AND INTEGRAL PART OF TREATMENT

I CAN are the two most important words you have in your personal medical bag Having a determined and positive attitude helps you mind and body stay energized and healthy and ready to fight cancer When any issue is unknown, force yourself to believe in the positive rather than the negative alternative The old song " Accentuate the Positive, Eliminate the Negative and Latch on to the Affirmative" should become your theme song in your fight against cancer This is not to say that when there are setbacks or bad news (inevitable in any life) you need to stop and regroup...grieve for what might have been, give yourself time to reflect on "now what?" and reorganize your energy & resources to the future!

· LEARN ACCEPTANCE AND THAT YOU ARE NO LONGER IN CONTROL

After a life in which you exercised control, cancer teaches that you really have little control over cancer, whether you will live or die, or over other people (including family) Accept it with grace and learn to give love in place of control The secret is to go with the flow Enjoy life as it is and as it comes, stop trying to change it or change people With cancer each day becomes a treasure to enjoy Learn to love each day passionately and courageously, like it was your very last Above all, stop thinking about life from the ego "I" point of view Focus on the giving part of love You can live daringly and lovingly because with your life in danger, you have nothing left to lose

· DIET MATTERS - EAT MORE NUTRITIOUSLY

If you aren't sure what to eat ask your doctor to recommend a nutritionist (most insurance cover this) Call Acs and NCI for books on diet

· AVOID POISON PEOPLE

Again follow your gut instinct when a person doesn't feel right to you CUT them out Realize that sometimes family members can be very poisonous to you

· VERBALIZE ABOUT YOUR DISEASE

The more people understand how you are handling your cancer the better they are able to help you The more you verbalize about it the more you come to uderstand and deal with your cancer Your body has been attacked and you need to talk - just like a crime victim

· DON'T WASTE TIME OR ENERGY ON ANGER

First you cry and get upset then you need to move ahead You can not move forward emotionally with your fight against cancer until you have stopped grieving for yourself and for the lost life that formerly filled your dreams and expectations Use that energy for positive areas don't waste it on denial anger or asking "Why?" Instead, ask "What? or How?"

· MAKE SPIRITUAL, EMOTIONAL, AND INTELLECTUAL PEACE WITH YOUR MORTALITY

Spiritual does not necessarily mean religious To successfully fight cancer, like a soldier, you must come to terms with your own mortality You can not wage war with cancer if you are paralyzed with a sense of desperation and fear You must build a life which is balanced spiritually, rationally, and emotionally

· TAKE TIME AWAY FROM CANCER

You can not eat sleep and think cancer 24 hours a day Take time to laugh Get good videos and books to change your outlook Talk to friends and family Try to live as normal life as possible Don't have your life totally dominated by cancer

· TAKE EVERYTHING ONE STEP AT A TIME

Though you are anxious for everything to be handled quickly and each question to be answered immediately, it requires time and patience

· SECRET CODE FOR LIVING

Focus your life on these six words:

Use these words for you meditations and think what they mean to you

· AND LAST BUT NOT LEAST

It gives you time to tell people you love them. DO IT NOW (if you were killed in an accident or had a heart attack there would not be time)

Written and shared with love from their own journey with cancer by Ken & Magee Cook