Nightmares and Fear
I have nightmares every time I fall asleep. There is so much terror and uncertainty in my life that it is sneaking into my dreams. Today I spoke to my psychologist about the things I have experienced. It seems like if it isn’t one thing, then its another, or another, or another. These horrible experiences keep finding me. Its like I am continually being baptized by fire. I do my best to make the best of it. I try to see myself as a hunk of steel being forged into a sharpened blade.
All of the forward momentum and force of will has its limits. Eventually you start looking at yourself asking why, why do these things keep happening to me? What am I doing that is causing all of these horrors? What can I do to stop it?
I have been pushing the idea that I am not my cancer, but right now I feel like I am my agony. My life is a mass of terrible things that are very uncomfortable. In every corner there is either worry, pain or fear, and I have found no way to escape or overcome it.
If you would like to continue following me in my journey through cancer feel free to click this link to read more.
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!
In this journey our world slowly shifts, filled with little changes that often go unnoticed. These little changes are like droplets of water, and over time they flood our lives. When my cancer journey began, these subtle changes took the form of research, fear and preparation. After the surgery, it was discovered that my cancerous monster was still with me. As I recovered from the cuts, bruises and drugs the droplets became heavier and fell faster. Once chemotherapy started the water became a continuous stream. My entire life was flooded with this new change, this new passenger, this monster started as something small but ended up saturating everything that I knew. Every conversation, every moment, every activity was soaked with the wetness of my cancer. There was no escaping the unyielding, ever forceful presence of its existence. Once I had a moment to look around and see my life, once that dreaded chemo fog had started to pull away I could see that my entire life had been destroyed. Everything had been taken away, my dreams, my loves, my passions.
The cancer, the journey of cancer is insane. I have searched my mind for a word that adequately describes the experience and I have found no word that matches it more accurately. None of it ever makes any sense, there is no rhyme or reason to it. It follows no code, no ideology and serves no greater purpose.
Though the cancer itself is a terrible thing, it isn’t all terrible. There is that chance, that hidden opportunity to take something good from this experience. Ask yourself what is life, and why are you here to live it? If you don’t believe in a cosmic reason for your existence, then decide one for yourself. You are more than your cancer, you are more than the sum of your pain. You are more than the ever-filling pool of cancer in your life!
In your moments of strength and clarity claim back your life, be the subtle changes to cancer, as cancer was to you. Be the small droplet that goes unnoticed till it becomes a heavy rain, then finally a steady stream. Become the unstoppable force, become your greatest advocate and reclaim your life, the life that is rightfully yours.
The power of this fatigue is incredible. I have never felt so exhausted in my life. The draining energy sensation is felt all the way to the center of my bones.
In these moments when all there is, is that one sensation, I do my best to become one with it. There is no sense in fighting something I cannot stop.
To fight the sensation is to squander the potential of the experience. It doesn’t make it any easier, it simply shows value to a moment I might have otherwise not saw.
Shawn White Blog
Living with Cancer
I start my next round of fancy chemo therapy tomorrow. Some would describe it as flying though the air while sitting in a snazzy chair with fish hook shaped needle in your chest.
It is my long day, so perhaps I will post a silly picture of me with my new dew.
Partying at the ER with my lovely.
No hats here, but plenty of fun time tickets available!