Paul's Heart

Life As A Dad, And A Survivor

Best Advocate Versus Worst Enemy

If you are lucky enough to be healthy, it is likely you have never had to worry about doctors more than perhaps an annual physical, treatment for a cold, or a vaccination. Chances are, if this is your situation, you would be more likely to go to the appointment with the relationship established as you being just the patient, and the doctor or nurse are the ones who know what is best, and you just accept whatever it is that they recommend. With the exception of the one little blip I had over 32 years ago with Hodgkin’s Lymphoma, I was rarely any challenge for my family doctor except for a seasonal allergy shot.

Once you cross over however to one of the more complex health issues such as severe injuries or chronic illnesses, there are two paths you face, and depending on the severity, it might just make a difference.

For examples, you suffer a broken arm, the doctor tells you that he will set it, and put it in a cast. Pretty cut and dry. You are the patient. You believe what the doctor is saying. And that is that.

Even when faced with something as serious as a diagnosis of cancer, the patient will always put their trust in the doctor. After all, we expect that with them having those important initials after their name. As long as we remain text book, we get diagnosed, treated, and recover.

But what happens when a page gets ripped out of the text book, and the doctor makes decisions based on everything, minus that one page, only to become a “likely” possibility as opposed to a firm diagnosis. Worse, when the situation is so unusual, and everything checks out, especially for someone “your age,” and there is nothing more that can be done, you are still adamant that something is wrong. You are no longer just a patient. You must become an advocate, your own advocate.

What does “advocate” mean? Coincidentally, a memory just popped up today in fact, and it is a great example.

This was a post I wrote nine years to the day. By this time, I had become well aware of the various health issues I face from my cancer treatments for Hodgkin’s Lymphoma. I was dealing with my second case of pneumonia, this time “double”, just nine months after a previous case of septic pneumonia. I am aware of a frequency among Hodgkin’s survivors, that those who develop pneumonia, develop multiple cases. But it only made sense to want to make sure I was at least mostly cured before releasing me from the hospital.

The hospital did release me the next day. I went straight to my family doctor who confirmed that I did still have pneumonia and took over my care from there, but agreed I would have recovered more quickly and thoroughly receiving the high dose antibiotics necessary through IV.

Advocating. It means sticking up for yourself when you think, feel, or know something is not right, and fighting for yourself. Have your ever heard a comment about a “bricklayer versus an engineer?” The engineer is assumed to be the smarter one with all the college experience and knowledge, yet it is the brick layer who has the hands on experience and knowledge. Which is more valuable? The engineer has no problem telling you that he does. The brick layer does not even give it a thought, just does what he must.

I have several causes that I advocate for, in general, adoption, health care, and cancer and survivorship. I advocate for myself, and for others. I am lucky that I have the teams of caregivers that I do, that I do not need to express myself as much, and why? Because I am included in the discussions that involve my care. But talk to me as if I am only a patient and have no say, we are going to have a problem.

However, with some of my issues, sometimes my advocacy, can make me go from my own best advocate, to my own worst enemy, especially when it comes to any of my multiple cardiac issues. I count on my doctors to explain to me clearly, everything that is at stake. I count on my doctors to make sure that if they have not gotten through to me, try again. Hopefully, time does not run out. And fortunately, this situation does not happen often, though admittedly it has on a few occasions.

As a certified “peer to peer” counselor in cancer for over 30 years, I have never given medical advice to a patient. No doubt, I have learned a lot about cancer, the different experiences, but the one thing I have never done, is told a patient what to do, especially override what a doctor wants to do. There is a huge difference between being an advocate for yourself, and delaying a decision that could cost you your life. In situations like this, time is often of the most importance. But if you find yourself in a difficult health crisis, and time does allow, then you can advocate yourself, to learn as much as you can about your situation whether it be by research or a second opinion. As long as it does not result in a negative outcome because of the efforts, then that was a good thing. That is what being your own advocate is about.

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