Most times when I breathe it hurts, like a knuckly knot tying off the life to my lung. Sometimes when I breathe it feels light, gentle and soft like a soothing sheet cuddling us asleep. Tonight as I lay in bed waiting to dance my sleepy time tunes my heart bounces behind my chest. It’s a rhythmic lullaby, a soothing story, a ballad of better times. The air is easy and for a change I do not feel queasy. My heart feels loved and I’m not being shoved. I feel good, great and even better now I am in a sleepy state. This is a marvelous moment, a comfortable time and a sign of a soothing scene that is coming to me in the land of dreams.
When it comes to our health and especially neuroendocrine cancer, the best thing we can do is research. Our health care providers may be educated and valuable, but they are not always educated in the ways we value. The NET community has amassed a collection of valuable resources. These hardworking souls have built a framework for the rest of us to survive. In this article I will be sharing many of the resources available to us. Its easy to get lost when we are in the thick of the storm, but we must be vigilant, work hard and press our force of will to become the eye within the whirlwind.
If you have NET cancer you know how hard this journey can be. Ignorance is shoveled into our ears time and again. To make the most of our moments we must muster the energy to purge our lives of this BS. We must overcome the misinformation of unqualified doctors, charlatans and alternative medicine gurus.
What is the value of research? How does it help me?
The more we know, the better off we are. Throughout our lives we’ve been told ignorance is bliss, but you and I know this to be false. Imagine how many lives could be saved if others with this terrible disease knew more about their cancer at the start of this journey? If I had even a fraction of my knowledge when first diagnosed I would have walked a completely different path. I would have understood why a NET specialist was essential, I would’ve been more powerful and demanded excellence from my health care providers. Clearly, I cannot travel back in time to change the events in my life, and even if I could, I wouldn’t. It sounds utterly insane, but getting cancer was the best thing to ever happen to me. Since I was a youngster I have been searching for a purpose, and now I have one. My purpose is to help you avoid the pitfalls in this terrible journey, by casting a light on the many holes to reduce the horrors you must face. If I get to help just one person, then my pain had a purpose, and that gives me peace.
So what role does research have in all of this?
Research has been the eternal flame in my terrible journey. Knowledge is the true guiding light in life. If we want to make the most of our moments, we must have the tools to make it terrific. It can be daunting, learning more about our agony can be incapacitating, but if we don’t face the facts we will never have the life we want to live.
Are you going to teach me how to research?
No, that is beyond the scope of this article. I will leave that to people more qualified than I. However, I will guide you in the direction of collecting the science-based data you deserve. First, we are going to navigate some interesting waters. Once you get passed the perils of pseudoscience and propaganda we can begin delving deeper.
What do I mean by pseudoscience and propaganda? The alternative medicine movement is mostly based on superstition and prescientific ideas. If we want quantifiable and healthy results from the treatment options we select, we must choose the ones proven to be repeatable with the scrutiny of double-blind testing. We must learn how the scientific method functions and apply it to how we interact with our doctors and those who are seeking to make money from our misfortune.
I want you to live the highest quality of life you can, the best way to do that is through the continual pursuit of science-based knowledge.
Cure for Cancer?
Why isn’t there a cure for cancer? I bet Big Pharma has the cure, but they don’t want to share it with us cause there is no money in it!
If a pharmaceutical company was able to develop a single cure for cancer they would be so rich, they would become a world power. The idea of a company having the cure for cancer and not releasing it is ludicrous. Lets start with the most basic point: Cancer is complicated, we need to stop talking about cancer like there could be a single cure for it. There is no one cure for cancer, because there is more than one cancer.
Now lets address this big pharma term. Some time ago I ran across a special little MEME that read:
“a patient cured is a customer lost – Big Pharma”
Critical thought teaches us to acknowledge our bias, to set it aside, to be fair and treat others for their qualities, rather than the actions of people unrelated to them. It is unfair to apply blanket opinions on groups of people. When these blanket opinions are applied they create a stereotype which sets an atmosphere of unfairness.
Each pharmaceutical company is an organization comprised of dozens, hundreds, even thousands of employees. There are dozens of pharmaceutical companies, how fair is it to say these people are concerned only with making money? Not all people are the same, and not all companies are the same.
Instead of making blanket statements about groups of people we don’t know, we need to research each company and judge them individually. Just like people, the ideology of one pharmaceutical company will change, one to the next.
Curing a disease is a lot more complicated than simply waving money at it. However, without money research doesn’t happen. People need money to live, and if they aren’t being paid to do the research, the research isn’t being done. Cancer treatment often hurts a lot, some treatment options can have terrible side effects on the body, so we need to test it over long periods of time to make sure it doesn’t horrifically hurt or kill people before the cancer does. I know it can be frustrating waiting for a cure, we feel hopeless, but if we invite every miracle cure into our lives, we won’t have a life to live.
There are potential cures ready to be shared, why wont they share them with the public? People are dying, some chance is better than no chance right?
No, if every supposed discovery is made available to the public, there wouldn’t be significant advancements in medicine. Lots of resources would be wasted implementing worthless and dangerous measures. Just because an idea is proven to work once in vitro, doesn’t mean in is going to work in real life. The idea needs to tested time and again to make sure it is safe and helps treat the disease or its symptoms.
But some life is better than no life, a terminally ill person is going to die anyways, why deny them an opportunity to live?
To put it simply, quality of life is more important than quantity. What if this untested cancer treatment has the side effect of permanent blindness, deafness, paralysis and chronic pain? Would the trade off be worth living the rest of your life in a horrific prison that is your body?
I don’t think so. Scientific discoveries must be proven to work. This is for our protection. It is not so they can squeeze more money out of the public. Testing their drugs takes even more money, and these pharmaceutical companies have already spent a fortune developing the drug in the first place. They have to pay another fortune to prove it is a benefit to their target population.
Well this drug had an informative video showing it can blow up cancer cells with bubbles. It said it could save lives, we need to be saving lives!
Absolutely, but we can’t save lives by getting people to drink mystery cool aid. Recently I had a conversation with someone about this situation. They read an article about how a treatment could kill cancer in vitro by blowing it up with bubbles. Immediately my mind when to work to see what they were talking about. I found this article at first and read it. I wasn’t satisfied though, I wanted to see if this was real and if so where the research was now. In July of 2017 it was retracted. Imagine if we spent the resources to implement this discovery, only to find out the result could not be replicated? Imagine if your mother, father, son or daughter sought out this treatment and died because it had no effect on their cancer? Willful ignorance and desperation kills people. Testing the efficacy of a drug is how we ensure the best medicine is made available to the public.
- Ronny Allen
- NET Alliance
- Sunny Susan Website