Survivors Blog April 11, 2013 - Bring an advocate with you!!

Once again I am strapped to an IV pole for fluids post chemo.  I was put on a new chemo yesterday and they drugged me pretty heavily to get it running at all, so I was asleep during most of my appointment. Then when they tried to run the second chemo, Cisplatinum, I had an allergic reaction which caused me to be the center of attention for a bit. The wonderful staff there got it all under control  pretty quickly. After yesterday, I thought I would give you a tip for maximizing your care.


Bring an advocate with you whenever you have an important appointment. You could also record your appointment on your phone if you are in  a pinch but, an advocate is better for a couple of reasons:

1. Two heads are better than one, sometimes your advocate will come up with questions you would never have thought of for the doctor.

2. If you are really to ill to make any sense or absorb what a medical professional is telling you , you must have someone prepared to ask the questions you need asked and to record the answers.

As for choosing an advocate, you must do some homework. I choose my sister Erin, because she has a steel trap mind, and she is not scared or worried by anything medical that is going on around her while she and I speak to the doctor. Most folks would choose their spouse but, in my case my wonderful husband has a really hard time coping with me hooked up to devices, or bleeding, or having an allergic reaction. So I have Oscar be my super support system at home and my sister be my advocate with the doctor stuff. If my sister is unavailable because she lives in another state, my backup advocates are generally Lauren or Eric, our neighbors.

You do also have a good second choice or auxiliary for an advocate if you have cancer. Every cancer center has a nurse navigator who is happy to help you keep track of all of the paperwork, help you formulate questions, and in my case explain all the medical jargon to my husband. My nurse navigators have been life saving helpers.  Eileen B. at my insurance company has always gone above and beyond to get me answers and assistance. Julie D. at SCOA has also been a huge help since she started as my new nurse navigator-- she even came down and visited today.

Now an advocate does not let you off the hook, you do make your own decisions which is why you have choose an advocate carefully. I also always have a note book on hand and a list of questions for my doctor, this way I get every bit of information I need to make informed decisions about my care.

Without Erin's help I would not  be teaching.