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Why a page on being assertive?  When you get diagnosed with a rare cancer, you may be confused, devastated, depressed, angry, or any number of emotions.  You may have had surgery to initially remove the tumor, and this may leave you a little weaker than your normal.  Well meaning family, friends, and health care professionals will sense your emotional/physical state and try to assist you in making health care decisions.  They may believe that this will help to take some of the burden of your disease from you.  But most of us would prefer taking personal responsibility for our own major life decisions.  You may ask for the advice of others, but you will eventually make the final decision alone.

The dictionary description for the word assert is 'to state or declare positively and often forcefully'.  And to assert oneself means to compel recognition especially of one's rights.  Sounds pretty simple doesn't it?  But try doing that when you are feeling physically weak from surgeries or cancer treatments.  It is not an easy task and it takes a little organization and fortitude on your part to do this.  In order to assert yourself, you first have to educate yourself about your cancer.  Rare cancers create a challenge in this area because many have scant information written about them.  I am hoping that this website and the support network that you can build from it will help you to do that.  

Try keeping these assertive behaviors in mind when dealing with your disease:

Educate yourself - Most likely some of the doctors that you see will not have a good deal of knowledge about your cancer.  Some may not have even seen it before.  Which means it is up to you to learn as much as you can in order to make treatment decisions.  You have many resources available to you including this website, other cancer related sites, books, libraries, and other patients with your cancer.  

Ask questions - When you talk to professionals and other patients with your disease, ask questions.  If you do not get an answer that you understand totally, ask the question again.  Don't be concerned that the question may sound foolish.  I would rather be a fool than miss asking that one question that will improve or prolong my life.

Change your mind - If you choose a health care professional or institution for treatment, and after consultation with them you feel uncomfortable about the care you may receive; don't be afraid to change and go elsewhere.  The most important part of your recovery will be your ability to openly communicate with your health care professionals.  If you find that the professionals you originally chose are not listening or considering your opinions, then it is probably time to look elsewhere.  

Choose a goal - After you educate yourself, ask questions, and find a comfortable health care team; you will be ready to choose an overall goal for your treatment.  Some of us choose longevity, some quality vs. quantity, some choose short term goals.  My best friend's Mom, Helen, lived 3 years longer than the doctors ever expected her to live with the multiple cancers they had found in her body.  She did this by constantly choosing a new goal (I want to live through the holidays, I want to live to see my grand-daughter graduate elementary school, etc).  She was a steadfast power of example for me and others.  

Keep your eye on the prize - Cancer treatments are sometimes not easy to endure.  You may find yourself weakening emotionally and physically.  This may deplete some of your assertiveness and leave you more vulnerable to having decisions forced on you that you do not wholeheartedly agree with.  One way that I overcame this was to constantly keep my eye on the prize.  When I was weak, I would repeat that to myself like a mantra and somehow it helped me to shore up unknown energy to keep fighting.  My prize was quality of life, not quantity.  It is the goal I have chosen.

Make yourself #1 - This was the hardest part of my treatment plan for me.  I have been a caregiver most of my life and it is a struggle for me to put myself first.  I can tell you from my own experience, it is an absolute necessity if you are going to accomplish your treatment goals.  I did all of my cancer surgeries and treatments alone because I had no family members geographically close to me.  So, I had to learn to stop worrying about others, and their opinions of me and what I was choosing to do.  I learned to ignore well meaning comments and suggestions, at times.  I educated myself and then made my treatment decisions.  And I took care of myself first so that I could complete those goals.  

Take care - Those of you who know me, know that I always end my emails with this comment to you.  It was the most important facet of my journey through my initial surgeries and treatments.  I had to learn to take care of myself and my body.  I had to eat at regular intervals, rest when I needed to, and try to find ways to relax and re-energize.  You cannot be a strong warrior when you are exhausted and depleted.  

Re-educate - The face of cancer treatment is ever-changing.  Even in the elite world of  rare cancers, new treatments are being developed on a regular basis.  Remaining educated in these new developments, as they develop,  will help you to communicate with your health care professionals about any new treatments you may want to try. 

Help Others - You may find it strange that I put this on this page.  This one element made all the difference in the world to my assertiveness.  When I was newly diagnosed I was depressed and lonely and unable to fight for myself.  I wanted to crawl in a hole and pretend it never existed.  I reached out for support and help and what I received instead was a request to help others.  As a result, I met a very young lady with my disease.  That helped me to finally get angry at my disease and the way it can ravage the human body.  I started fighting for her, and then for myself.  Helping others, motivated me to help myself.  Odd how that worked.......