advocacy

Advocacy

Your quest for personal advocacy will be a humbling one.  I discovered that the people charged with my care weren’t taking care of me. While fighting the nightmares pounding at my door I planted my feet on the floor and stood up for myself.

To be your own personal advocate you must first realize that the only person who is going to have your best interests in mind is you.  Once you realize this, then you will have the foundation to reclaim your life.  With this you will build the walls of your new home.  Finally you will construct the roof by enforcing your boundaries, taking control of your life.

This road is a difficult one, but necessary.  If you desire to live your life by your terms, then take charge, choose who you want to be and become that person. Masters of personal advocacy made the willful choice to become who they are. Will you do what it takes to become who you want to be?

We must become advocates, all of us: 3

Asking Questions

Today I started being my own advocate, by asking questions.  I told my oncologist I wasn’t satisfied with the explanation he provided for why he didn’t order the Gallium 68 scan.  I asked that he refer me to a nutritionist.  Finally, why was an octreotide scan and 5-HIAA test never ordered.

Why order a PET scan to search for other tumors when he said the scan wouldn’t reveal anything.  Why waste resources when you know the results will be inconclusive?

Its unfortunate when it feels like your oncologist ignores your requests and questions. Its not very pleasant when you find holes in the data given to your by your health care provider and its scary when you are losing faith in the treatment you have received.

To be fair we’re all human, we can only know what we know. People can only do what they can do.  I could sit here all day wondering if things would’ve been different if someone suggested to do this or that, but if things were different, things would be different.  There are moments when I get angry, but unrefined anger doesn’t do anyone any good.  Anger filtered through a lens of critical analysis can give us the outrage we need to change something.

I have initiated change, I asked the right questions but now I feel depleted.   It took so much to stand up and ask my questions that I don’t have the energy to hear the answers.

I’m not happy with my doctor, that doesn’t mean he’s a bad doctor or person. Simply put we just aren’t a good fit right now. I assume that he is a competent, friendly and a passionate person, but I need more.  I need a second opinion from someone who specializes in NETs.

asking questions

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We must become advocates, all of us: 2

One Cancer

 

“Big pharma doesn’t cure people, they want to keep people sick and manage the pain.  They don’t want to cure people because there isn’t any money in it.”

“You shouldn’t do chemo because it is a poison and it is only going to make you more sick.”

“Chemotherapy causes cancer, that’s where cancer comes from.  There wouldn’t be any cancer if Big pharma hadn’t invented it.”

“You should stop taking your chemo because it is killing you.”

“You should stop taking your chemotherapy and see this shaman I know.  He’s amazing! I bet he could cure your cancer.”

“You shouldn’t do chemotherapy, I know this really good herbal tea supplement that has been proven to cure cancer.”

I have heard all of these and many others.  They are all bold and dangerous claims. Most people are so far removed from the world of cancer and chemotherapy that they make uninformed, knee jerk statements about cancer treatments.  They make claims that hurt innocent people facing life threatening situations.

These statement are dangerous because they broadcast their opinion as fact.  An opinion that may sway a person with cancer to refuse chemotherapy, because they trusted an unreliable, inaccurate and emotionally motivated source.

There is an ideology that is prevalent within society, one that serves as an advocacy for ignorance.  This ideology is a large brush stroke that uses many colors to paint their vision.  I would like to address the one that directly affects people with cancer, a group I call One Cancer, these people believe that there is only one cancer, that all cancers are the same and that they can be cured with the same treatment.

They believe that the pharmaceutical companies are evil and they either already have the cure, or they are creating the disease.  That their interest within the medical community is to juice out every last penny from people suffering with cancer.  They do not believe that someone would dedicate their lives to the betterment of others.  They believe that these organizations are made up of evil, greedy and selfish people.

It is through their bias and hatred that they form the opinion that chemotherapy offers no benefit.  Then do their best to spread that misinformation as far as they can.

It’s easy to vilify others; bias is so prevalent because it is easier to live with ignorance than to be informed.  Ignorance is bliss. Unfortunately, it is from this bliss that hatred is born.

Through this hatred misinformation is spread.  To be an advocate for your health you must have the awareness and ability to see and ignore the information that will hurt you.  It is important to be able to separate the information of credible sources from those that will not be to your benefit.  Ultimately it will be up to you to make that distinction.

Research is your greatest ally, you must research everything.  Take no one’s word as gospel.  If a source claims that a particular treatment plan is the best approach for your particular kind of cancer, see if they are a credible source.  It doesn’t matter who or what they are, fact check the facts they are giving you.  If the source is your doctor, get a second opinion, or third.  Use whatever resources you have at your disposal to see if the information being given to you is your best choice.  Making the best choice requires adequate information, critical thought and knowing how much you are willing to sacrifice and at what cost.

There are no small sacrifices when it comes to cancer.

 

If you would like to read We must become advocates: 3 consider clicking the link right here.

We must become advocates, all of us

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.