Survivor's Blog April 21, 2013- Never believe everything they tell you.....

Never believe everything they tell you, or as I read on a bumper sticker yesterday, " the more you disapprove, the more fun it is for me!" As many of you may have noticed, I have not had the best week ever. Despite my affirmations, and attempt at a very positive attitude, this week has taken its toll on me. For some reason my reaction to chemo also triggered an emotional storm that caused me some very negative thoughts along with a very typical allergic reaction.

So I had to stop and remember principles that have gotten me through this two year cancer process. I am hoping some of these principles might help you in your journey:

1. As a patient, you have the right to ask as many questions as you need to understand your condition. No matter who it bothers, or whom you drive crazy with phone calls  .. you have a right to understand what is happening ( or what will happen) to you regardless of whom it makes uncomfortable.

2. You have the right to say no! Ultimately, cancer treatment is designed to help you live a longer fuller life. If the treatment starts to cause you harm, or you feel uncomfortable it is your job to say no! Seek alternatives. Ultimately, your doctors and nurses are there to help you through this process, not make your health care decisions for you.

3. You have the right to a second opinion or as many opinions as you need. Your doctor may be in charge of your care but, he will not be offended if you seek the counsel of another doctor. Last time I sought a second opinion I did do the polite thing and inform my doctor of what I was doing and why but, regardless of what he ultimately thought, I went and talked to another oncologist.

This week while making this decision, I have sought the counsel of my General Practitioner and the Training nurse at SCOA. Before I make my final decision, I am going to speak to my counselor as well. When I am fully informed, I will make my decision prior to restarting chemo on May 1.

4. If family or friends are offended or worried about my decisions as a patient .. so be it!! I have been wrestling with the tough decision to continue with treatment or not. I need to decide whether to start a new type of chemotherapy that may have devastating side effects for an artist like myself or not.  Part of the problem with deciding whether to follow my doctor's advice has been how my family will feel if I say no to this treatment, when my doctor is saying it is my next best chance at a cure? Is my quality of life more important than the ultimate length of my life? I am still struggling with this decision. One thing I do know in my bones is that the decision is mine.. if it upsets folks so be it!!!


Ultimately, I need to remember that the choices lie with me not my family or my health care team.