Where am I am today? I am in a I fucking hate this life kind of mood. I feel like utter shit! I am tired of feeling this way. I can’t feel my fingers and toes, earlier I couldn’t feel my face. I am stressed beyond imagination and I feel like all of my hopes and dreams have been stolen from me. I feel robbed. I feel like I am living in this shell of a body, I am so angry. I try and I push and I do my best to make the best of every moment. Times like these, times like these long moments I despise the cards that have been dealt to me. It fucking sucks, there is no other way to describe it.
Becoming your own advocate means you must learn how to critically research and develop critical thinking skills. I consider personal advocacy to be an inner boundary (something I will discuss later).
Being your own Advocate means you must be a leader. You have the break the mold of putting your life into the hands of strangers you know nothing about. These people should be working for you and not the other way around.
We should be interviewing these people, they should be earning our trust, we are their boss, there should be no point in our treatment plan that they are our boss. They are the people we are using to get a service done, if their ego or inability gets in the way of achieving your goals then they are failing in the duties they were hired for. When this happens it is time for you to fire them.
If you hired someone to fix your motor vehicle would you hire them again if they failed to fix the part you paid them to repair? Would you hire them again if they refused to follow your instructions? No, of course you wouldn’t, so why are we shelling out thousands and thousands of dollars to health care professionals who are not meeting or exceeding our expectations.
Something has got to change and the only way I can see that change happening is if we have a greater understanding of our care. If we take charge of our treatment plan and learn how to say NO, we can become a true advocate for our own health. We have to be our own advocate. This WE is more than just cancer patients, this is everyone. Everyone has to be made aware of how to demand the service they deserve because they are paying for it, the service they deserve because they are a human being.
What does this mean, what does that mean, these are questions I found myself asking along the way. Often I would see lists of abbreviations and acronyms that represented critical bits of information that did not exist within my vernacular. There is so much information in the medical world, it is easy for anyone to get lost in its sea of vast knowledge.
This series focuses on the abbreviations, acronyms and terms found on the different documents we see through our cancer journey. This series is less entertaining and more informative, each post will have the subject matter after the part number in parenthesis. My goal is to provide a comprehensive and easy to locate list to help you understand the difficult road ahead of you.
I want to leave off saying that I am not a doctor or a physician. These definitions and explanations reflect my own personal research on the topic. You should consult your health care provider when deciding your medical needs. My goal is to give you some frame work to help facilitate those conversations.
Sometimes it is a challenge to see our environment, it is difficult to make out exactly what it is we are experiencing. When you are facing something as difficult as cancer it can be hard to find which direction is the right way to go. This is especially true of my cancer journey. When I started this road I put my faith into a group of professionals that I thought would lead me well. Unfortunately I discovered I was a blind man being led by another blind person.
In one of my last posts I made a comment about how upsetting it was that my oncologist knew very little about my cancer. After watching this video it shed more light onto why he was so mistaken about the nature of my disease.
Why do I need a specialist?
Ignorance of something rare is excusable, but is it when the doctor doesn’t refer you out to someone who might be more knowledgeable?
There are two kinds of carcinoid, typical and atypical. I have the pleasure of owning the atypical variety. I had a pneumonectoy on July 27, 2016. That means that my right lung was removed in the attempt to stop the spread of my cancer.
In the following video Dr. Robert Merritt details some of the nuances of Bronchial Carcinoids. If you have the time to listen to it its actually pretty fascinating. If you have a carcinoid friend inside of you there is a chance it might get your gear going in the right direction.
Look here! This is another opportunity to read more about my cancer journey! If you would like to take some more steps with me, feel free to click here!