New Orleans – Personal Advocacy

New Orleans

New Orleans

There hasn’t been a post for a while because I’ve been preparing for my trip to New Orleans.  In this mystical land, I’ll be taking a series of scans and visiting with a neuroendocrine specialist.  I can’t change the past, but I can have a leg up on the future.  This journey will give me the opportunity to further explore my disease, have a conversation with someone whose informed and can explain the results of my tests.

Recently I had my Gallium 68 scan.  Getting what you want comes with a price, the price I paid was in the form of a few uncomfortable flashbacks. The preparation room reminded me of my hospital stay.  There were sights, sounds and smells that transported me back to the nightmare of my post-surgery experience.  It was terrifying and I was alone.  Once they stuck me with the needle I remembered that these horrors are easier to face when someone holds your hand.  But, like many cancer moments, you learn to hold your own hand.

This journey and the Ga 68 scan are two moments on a very short list of wins in my cancer journey.  Though getting the Gallium 68 scan was a success it was followed by expected ineptitude. This ineptitude manifested through my general oncologist’s inability to read the results provided to him.  The information he told me over the phone makes me think he barely read the results at all.

Personal Advocacy Tips

Four valuable lessons I’ve learned about personal advocacy.

  1. If you have cancer, skip the generalist and see a specialist.
  2. Demand to see the test results and push to speak with the person who interpreted them.
  3. Get a second then a third opinion.
  4. The best intentions don’t always lead to the best results.

Best Intentions ≠ Best Results

Some time ago I was approached by two people who were angry about my cause. They were reading my computer screen from behind while I was at a coffee shop.  These two-people moved to sit next to me then stared at me until I addressed them.  I learned they were malpractice lawyers who represented doctors.  Their words were venomous and disrespectful toward me.  They told me that the doctors they represent really care about their patients and the intent of these doctors was to help.  They then went on to tell me I was wrong and a bad person for trying to help others achieve personal advocacy.

Clearly, we can see that even when a doctor means well, that doesn’t equate to doing well.  If your mechanic cut your car’s brake line while trying to fix it, would you let bygones be bygones if it caused you to crash your car?  Would you still use the same mechanic if they intended to fix the car but damaged it more?

My intent isn’t to pave the way for lawsuits.  I want you to be more informed.  If you know how to ask the right questions you can avoid many of the holes in life. Perhaps if you know something about car repair you could avoid hiring this terrible mechanic.  If you knew more about your health you could side step a horrible doctor, or an unnecessary treatment.

The doctor is there to serve you, you are their boss, make sure they know it. Treat your body like a business, one that pays with pain. Educate yourself so that you don’t pay your doctor more pain that he or she is worth.

I look forward to starting my trip tomorrow.  I thought that by now I would be done with my cancer journey and I would be writing the end of my novel. Instead it’s another kind of trip, one of new beginnings.  New Orleans is a journey into the world of second opinions.  This doctor’s opinion is not the ultimate truth, but it is better than the one I have been given.

Advocacy Links

My journey to New Orleans marks a major milestone in my Personal Advocacy journey.  If you would like to discover what has brought me to this point feel free to follow one of these links.

NOLA

Second Opinion – Personal Advocacy

Hope the Mouse

Fight Abuse – Boundaries – Personal Advocacy

Deity of Cancer – Personal Advocacy

Abuse – Personal Advocacy

Second Opinion – Personal Advocacy

second opinion

Second Opinion

You should always get a second opinion.  They say that opinions are like wiggly toes, some people seem to wiggle their toes more often than others.  Doctors just have really big wiggly toes, so when they move them about, we seem to notice and remember them more.  They also went to school to learn how to wiggle their toes, they are experts in the act of toe wiggling, some even see them as toe wiggling gods.

Toe wiggling and opinions are similar in that most everyone has the ability to wiggle their toes, if not toes then perhaps their nose.  What I know is that they call it a second opinion because everything your doctor just told you was his or her opinion.  Doctors are people, they’re human and during the course of their practice they make mistakes.  It’s important when we make mistakes that we learn from them, since doctors are still practicing they are constantly making mistakes, learning and becoming better healers.  By getting a second opinion you can reduce the chance that you become one of your doctor’s mistakes.  His mistakes may make him a better healer, but surely it will impair your quality of life.

Your Opinion

More than a second opinion, what is your opinion?  You have one, just like all the wiggly toes.  Sure your opinion might not be rooted in your doctor’s reality, but that’s fine, the only reality you can know is your own.  After all is said and done it is you and not the doctor who has to deal with the effects of his treatment plan.

In the quest for personal advocacy your opinion is the most important.  It is more valuable than a first or second opinion, it is more important than your spouse’s, your children’s or anyone else’s thoughts about what you should do.  You and you alone must make all of the sacrifices, everyone else can bow out at anytime.

The importance of acknowledging your opinion is that it does two things.  One, it reminds you that your opinion, thoughts and feelings matter.  Two, it ensures that you have made your decision with informed consent.  The last thing you want in this process is buyer’s remorse, especially when it comes to your life.

Links

If you would like to continue the journey of discovering personal advocacy feel free to click on any of these links.

Fight Abuse

Introduction to Boundaries

Cancer

Power Advocacy 3