5 CANCER ROADBLOCKS TO ADVOCATE AGAINST
Updated: Dec 24, 2021
Learn how to fight the factors that are delaying proper treatment
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There are numerous factors that can come against a fast and accurate diagnosis or even come against receiving proper treatment. Wrong expectations, doctor mistakes, lack of understanding...the list goes on. No matter what it is that is affecting your care, something needs to be done. And whether you like it or not, it is up to you to be the one to make the change.
Below are 5 potential problems that you can fix by simply saying something.
Lack of Understanding
You might not know how to explain your symptoms, because you've never experienced anything quite like this before. Fatigue vs tired. Aching vs tender. Sharp vs shooting. All the terms are just exhausting and if you're new to the realm of ailments they can be a bit daunting. Your doctor should be able to help you define your pain by the way you explain it, but what if you can't even explain it?
On one particular instance, I had a feeling that "something dropped," inside of me, but couldn't manage to explain that feeling until years later. I didn't know how to put what happened into words, so I didn't try. I should have. I should have went right into my oncologist's office and told her something...anything. Even stating the words "something weird happened" would have been better than nothing.
The take away here? Say something. Make a mess of it, try and try again, until someone hears or understands you. Don't say silent. Silent suffering does not make for a quick prognosis. The sooner whatever is going on gets figured out, the better.
Before the diagnosis, during the turmoil of trying to figure out what was wrong with me, I was fairly new to going to doctors. I just assumed that doctors had some inner circle where they chatted about patients and kept each other up to par. I was wrong. They don’t communicate. Just because you told the primary doctor all of your symptoms does NOT mean that you won’t need to repeat it to the specialist they recommend you to. And don't think that just because you brought your stack of medical records for the new doctor to review beforehand, that they actually read every detail. You will have to repeat your whole entire story and explain what the last doctor tried.
You might even need to repeat key concerns to the same doctor a few times, because when you stop and think about it they can’t be expected to remember every little detail you told them a week ago, can they? Think about it, they see ton’s of patients and just because you remember every single ailment perfectly, doesn’t mean that they do. And honestly, they shouldn’t be expected to remember, although it’s nice when they do. This is where you need to be your own advocate to tell and retell your story again and again.
Now, when you’re given an oncology team, they seem to be more on top of things when it comes to talking to each other, as well as remembering key details. But, it’s always best to lean on the side of being a squeaky wheel than staying silent and taking the chance. Don't feel as though you're being annoying by repeating everything fifteen times. You're not annoying, your circumstance is annoying. You're simply trying to be open and upfront.
The lesson here? Expect to repeat yourself, a lot.
I'm not going to go into the whole story here about how a certain doctor had a MAJOR mess up that quite possibly led to my cancer progressing to Stage 4. If you're interested in reading about that story you can find it in my book, A Cancer Made Mess, which is available here.
Simply put, this post is coming from someone who spent years working through resentment to get to this place of forgiveness and understanding to help you realize some vital facts to keep in mind.
Doctors make mistakes
Doctors overlook important details
Doctors forget things
Doctors are human
Now, knowing that no doctor is a superhero, we can shift our perspective and see them as assistants in determining our ailments, rather than the judge and jury. No one knows your body like you. No one knows your symptoms like you. No one knows you like you do. That's why you have to be your own advocate, no one else is qualified.
If you feel something is wrong, go to the doctor, tell them, hear what they say, follow their treatment plan, be a good patient and go into it with an open mind, expecting the best. But if you feel you aren't being heard, if you feel as though they don't care, it's time to decide for yourself if their treatment plan is best for you. It's time to decide they are the right doctor for you.
Now, that is being said with the understanding that doctors are not miracle workers. Don't be a nightmare patient just because it's not going as you expect. They can only go by what you tell them and can only do what medical practices approve. I'm referring to a doctor that shoves your concerns aside as though they are irrelevant. You want someone who wants to hear you. Who wants to understand your side. Who cares.
Possibly the most important take away of this post? If you feel unheard or cast aside, find another doctor.
Ignoring Your Instinct
Not comfortable with the newbie nurse trying to access your port at the emergency room? Listen to your instinct. Ask if they have someone more experienced available. I wish I would have. On one particular visit to the emergency room there was a young nurse who was assigned the task of accessing my port. I could tell he was nervous. His hands were shaking, his face was flushed, and he was fidgeting. He had no idea what the heck he was doing, and we both knew it. But, I kept quiet.
Why? Because I didn't want to embarrass him, get him into trouble, or hurt his feelings. And the result? He ended up permanently dislodged my port. Yep, as I was laying flat on the table, he was literately applying the entirety of his upper body weight onto my chest, while wiggling the needle around that was inserted into my skin, trying to access my port. I could barely breathe he was so heavy. I can't say that I was surprise to see the needle was bent when they removed it. Now, you know as well as I do that no pressure whatsoever should be applied, it should be as simple as aim and poke. Unfortunately, he did not know that.
After that mishap, my oncology team discovered that my port was now tilted off center. From that point on, I only allowed nurses who had experience with actual ports to access my port, no matter if I was at a cancer center or not. Yes, that sometimes meant that I had to wait an extra hour until a qualified nurse arrived. But better an extra wait than another go around with Mr. Hulk.
Remember two things:
1 - Don't be afraid to hurt feelings, your actual life is on the line here.
2 - You have instincts for a reason. Value them.
"No" as an answer
During one of the earlier medical procedures, some cancerous tissue was removed and sent to a lab out of my insurance coverage area for testing. First, I received a bill for thousands of dollars from the testing center. Next, came the letter from my insurance stating they would not cover it. I ended up writing a letter to my insurance company explaining my diagnosis and my lack of control in the situation. And what happened? They took pity on me and made and exception. They covered it guys. Thousands of dollars. I managed to change the initial "no" to an astounding "yes."
If you fall into a situation where an institute is claiming it is against procedure to "help," I suggest to make an effort to change their mind. I find writing letters leave more of an impact than a phone call, but at the very least call them, talk to them, explain your situation. What's the worse that could happen? They say no and you're stuck in the same position you started? At least then you could say you tried. But you know what? They just might say yes.
And you might hear "no" a few times, I suggest keep trying. All it takes is one "yes".
The Final Point?
Remember, you can make a difference in your treatment, because you are the determining factor of what sets your treatment apart from everyone else's. It's your treatment plan. Your health. Your life. You are the determining factor, the driving force, the voice.
The final point? It's up to you.
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