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.
- If you have cancer, skip the generalist and see a specialist.
- Demand to see the test results and push to speak with the person who interpreted them.
- Get a second then a third opinion.
- 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.
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.