Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “October 17, 2015”

What Not To Say To A Doctor


It has been said to me by a few, that I really only began to “suffer” the way that  I do, when I discovered there were issues related to treatment therapies from my cancer decades ago.  I was “fine” until the first major health issue related to my cancer survival reared its ugly head needing that heart bypass thing.  But once doctors realized that there were other issues, that is when I caused other things to happen to my body by “willing it” and worrying about things, because I had become aware of them.

Funny, I had always thought that I was doing the right thing, by becoming aware of the unfortunately many circumstances that my original doctors decades ago clearly underestimated or never even thought of, because by being aware of them, I do not have to allow them to sneak up on me like the “widowmaker” I got dealt with my heart.

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I will admit, the number and severity of issues that I have been diagnosed with can be overwhelming, to me, but especially outsiders.  And there are those who refuse to even believe they exist, even some close to me.

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I do my best to protect everyone from the reality with a false shell that I project, the proverbial “book and cover”.  If all you see is the cover, that is all you get.  And for many who are blessed with perfectly healthy and happy lives, then you like my book cover.

But as I originally struggled with the plethora of new diagnosis and worsening symptoms, it did begin to take its toll on me.  I finally was getting answers to why I felt certain ways, even before my heart surgery, that my local doctors were baffled as to causes.

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One of the worse things I was dealing with, especially during the last ten years, was unexplained pain.  And without dealing with the pain, other things develop such as eating disorders and insomnia.  As illustrated above, pain has a major impact on a person’s day to day living experience.  Then you combine it with someone who is so stubborn and bullheaded, that they force themselves to grind their body well beyond what it is capable, perhaps even as a healthy individual, and emergencies are going to pop up.

As my pain level was hopefully reaching its plateau, or at least I was hoping it was, I sat across from my physiatrist, who was responsible for my lung issues and pain concerns, and I made a statement to Dr. S that even shocked his nurse assistant, and his response shocked me.

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“I don’t know anymore doc.  Maybe I deserve the pain that I am in.  It is the price I have to pay for having survived my cancer.”

Dr. S unleashed an angry barrage of frustration at me for even thinking my comments.  I have honestly never been yelled at by a doctor.  I have gotten attitude because of my stubbornness, but never have I been yelled at.

But his message came across loud and clear.  He cared about me.  He knows the lack of follow-up care I had received for all those years, but assured me was no longer going to be the case.  And for those of you reading this, and newly in remission, be thankful that you are now getting the follow-up care that you are.

He stressed to me, that we were finally going to get the pain under control.  My health issues will never be about cure, but rather management.  And if you can manage the issues, you can manage most of the other areas of your life.  But if you do not have a grip on the pain right from the beginning, other areas of your being are going to suffer.  The main issue for me as always been how hard I am on myself.  I have been told this by other survivors as well as my doctors.  I am tough on myself emotionally and physically.  I have never wanted my life to be defined by cancer, but I have since turned it around that my life will not be denied by cancer.   I have never wanted pity from anyone, but there is a huge difference between pity and empathy.  Most importantly, I have learned that if I am to survive, I have to accept that my body has not been what I thought for the first half of my life, but my body is still working.  I have limits, and it is when I forget that I have limits, or push my limits so as not to disappoint someone, that is when my body quickly reminds me, and sometimes quite harshly.

Over the decades, I have known so many survivors who have gotten through their lives, managing their issues, and still able to enjoy their lives.  And they all have reasons to feel like I expressed earlier, and they do.

The important thing is that if you feel this way, it is normal.  More importantly, you are not alone.

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