Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Health Care’s Worst Offense


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I want to state a couple of things before I get to my post.  I 100% support my primary care doctor, and all of the specialists taking care of all of the late side effects I deal with, from my battle with cancer.  When I reach out to them, they not only hear me, they listen to me, and they take care of me, promptly, and most importantly, correctly.  And there is one reason that my care works.  Because I do not waste their times with issues that are clearly not a medical emergency, AND, when I have a situation, I explain the issues without drama, just facts.  When they are contacted by me, or about me, they know something is definitely wrong.

Next, the nurses that I interact with, are also top notch.  They are the initial contact that I have with my doctors, and are able to determine what needs immediate intervention, and what can be delayed upon first availability of the doctors.  And many times, situations can be dealt simply with just the patient/nurse communication.

Finally, for the most part, the emergency personnel that I have dealt with in hospitals, have done well by me.  I carry enough identification on me, to alert anyone who has to deal with my issues, that I am not an “average” person, but rather there are a lot of unique circumstances about me, that have to be recognized before the first procedure is performed on me.  You will not often hear about the good things that emergency personnel do for patients, often times just the bad.

Emergency personnel have so many personal concerns to deal with about their jobs, long hours, health hazards (especially contagious issues), and even unpredictable behavior of patients.  And to make matters worse, the majority of hospitals and clinics are just simply understaffed and overworked.

But there is absolutely no excuse for me to have read a Facebook post that I read this morning.  A fellow long term survivor posted that she went to the emergency room early Wednesday morning with a high fever and shortness of breath (SOB).  This kind of post gives me flashbacks to the times that I had to deal with septic pneumonia.  In any case, her struggles got only more bizarre, as “specialists” argued about who can do what as far as diagnostics, and then arguing who would be in charge.  The post was more complicated, but just imagine if you will, I imagine it to make less sense that following Dr. Howard, Dr. Fine, and Dr. Howard.  With her past treatment history, an urgency needs to be stressed because of the possibility of congestive heart failure (CHF).  A symptom of “wheezing” seems to restrict the care to being directed to a pulmonologist, but as many of us with long term issues know, CHF can produce the wheezing and shortness of breath.  Bottom line, for those of us who have had issues related to our past cancer history, we know how to argue for our care.  And this is the frustrating part, getting medical personnel to listen to us.  If the personnel have not been taught about us, they need to learn.  And if they are not getting any kind of training post residency, they have no choice but to listen to us, but in many cases they will not.

My last trip to an ER, got the following response.  My wrist pointed to my wallet, which had all of my issues documented, most importantly, the phone number to my doctors at Memorial Sloan Kettering.  I urged the triage nurse to contact MSKCC, and within 10 minutes, my health history as a long term survivor was faxed to the emergency room doctor, and I was treated appropriately.

Three days have gone by now, and the earliest it looks like the writer of the post will see any kind of relief, as far as either talking to a specialist, or testing for CHF may not occur for another three days as it is argued who will take charge.  And the frustration is understandable, as the patient goes to the RN to argue for her care.  But the shocking thing is the response by the nurse, as if the nurse was being bothered by the woman fearing for her life.  Like I said, I know hospitals are understaffed, especially when the majority of the care is left up to the nurses to provide.  And no one appreciates that more than someone who has had his share of hospital stays in recent years.  But there is no excuse whatsoever, to not have empathy for a patient who is scared, literally afraid of dying.

I have known my share of long term survivors who have suddenly lost their lives, with unsuspecting causes, only to be revealed that a raging infection had taken place, unbeknownst to the medical staff.  I know too many long term survivors who have had “routine” procedures done (that a normally healthy person could go through), only to suddenly die from unexpected complications.  But the fact is, cancer survivors who have been exposed to the extreme toxicities of chemotherapy and radiation, we know when our bodies do not feel right.  We know when something is going wrong.  And we will do our best to help any medical person to diagnose us, and save us.

But you have to start listening to us.

Scanxiety


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If there is one feeling possibly worse than the possible diagnosis of cancer, it is the anticipation of a pending PET scan (the current standard for declaring a patient is in remission, or is still in remission).

I try not to publish two posts in one day, but a have several Facebook friends who are going through scans or receiving news about the results of their scans today through the upcoming weeks.  So, as one thing I have tried to justify my survivorship as a long term cancer survivor, I want to offer this hope.

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Many people reading “Paul’s Heart” are also members of on-line support groups as well as Facebook pages.  These support areas can be cancer specific, or cancer general.  And these can be a great tool from support to information.  But there has to be an awareness of balance if you subscribe to any of these groups.

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Here is the logic you need to understand.  If you did not have cancer, would you be on a support web list? Of course you would not.  If  you are dealing with cancer, would you be on a support list?  Most likely.  Unlike when I went through my treatments for Hodgkin’s Lymphoma, I never had the internet for support.  But then, what about the period of time, once you have heard, or expect to hear the word remission?  Would you still plan on participating on these support sites anymore?  There is a good likelihood not.  All we want as a cancer patient is to be done with it, once and for all.  Only the few, like me, stick around.  But for the most part, only people that need help, will seek help.

One of the biggest fears resulting from “scanxiety” is that a patient will not get to hear the word remission, or worse, hear the word relapse.  And these are real possibilities.  They do occur.  But if you participate in internet support groups, there are chances you will hear a lot more about relapses, than you will hear about long term cures.  And why would that be?  Someone who has been cured, like mentioned earlier, will most likely want to move on.  That patient has no need to be on an internet support group.  But the patient who is still dealing with cancer, or must deal with it again, will be on the internet.  So again, using logic, just because you cannot see all the long term cures, does not mean they are not there.  But in fact, they are there, in great numbers.  Over 12,000,000 of us.

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I do know how many of you are feeling right now.  In over 25 years, I have met thousands of cancer survivors, many of which I still hear from.  I know what each and every one of you feel, as you do the  mid-point scan, the post treatment scan, and all the other scans after that.  It does get easier.  You have to believe that what you have gone through is enough.  And here is where some tough love is going to come in… and if by some chance, you are still dealing with it… what are you going to do about it?  You are going to keep fighting because that is who you are.

If you have just completed scans recently, or will be getting them done soon, my thoughts are with each and every one of you.  I hope you all get to hear the word remission, or at least, the disease is decreasing.  From there, following the news of remission, will be the six month anniversary, the first anniversary, the fifth anniversary, the 10th, and then like me, the 25th!

Try not to be overwhelmed by what you see others going through.  They are going through their own battle.  You have one thing to do, get through that scan and get on that road of remission.  Speaking of which, a closing line I am known to use with people who reach remission…

“As I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.  And if you are not on that highway yet, hurry up.  Once you get on it, it’s a great ride!”

What The Ears Don’t See


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I have always been one to believe in the importance of face to face communication.  Back before the internet (yes, I am exposing my age as a geezer), I would be most often be irritated with having a simple telephone conversation.  I always felt that the person on the other end of the phone line (for those of you have no knowledge of communications before wireless – these were cables that ran from house to house with big poles spaced about 200 feet apart from each other, carrying spoken noise from one talking receptacle to another), might not have been paying attention to me.  Or because of being a visual communicator, I may not have been able to get my sincerity across without someone being able to see it with their own ears, that I was serious.

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But texting and social media have taken my communication issues to a whole new level of insecurity.  We now have an entire generation of people, who do not have social skills to hold a simple face to face conversation with someone.  Sure, they can care on a text or private message conversation, but in person, not very likely.

The problem with communication today, is that the typed word is just that, plan as the screen you read it on (it used to be as plain as the ink on the paper).  At least with a telephone, you could tell if someone was happy, sad, angry, confused… oh wait, yes, on the phone at least, you had the opportunity to straighten out a misunderstanding.

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But in these days of political correctness, misunderstandings can be carried to an entirely new level.  Both friendships and families have been torn apart by the lack of emotions understood by the simple typed messages.  And if there is any confusion, it is too late to do anything about it.  On the phone, you could immediately take back what you said, but by the time you start texting, “OMG, I did not mean it that way,” the recipient of the original text has already gone from 0 to 60mph with a response, and the discussion escalates in intensity.  Feelings get hurt.  Worse things are exchanged.  Relationships often end up ended.  I have experienced this several times in my life.

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To make matters worse, conversations held on social media such as Facebook and Twitter, have what are called “trolls”.  These are individuals who have nothing better to do, than to initiate situations of dissent, or people who are just plain miserable.  They look to cause trouble, and many are very good at it.  Hopefully, lists and pages that are infected with these trolls have good moderators who can weed these mean spirited people out before any real harm is done, to what otherwise might actually be a good source of information.

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I miss the days of face to face conversations.  I do think we have become to desensitized with the internet communications.  And I am certain that I have had my share of misunderstandings with things I have written or misunderstood.  I have a lot of friends who know me well enough, back before the internet, who are very quick to let me know if I am off my rocker with a comment, something that does not sound like it could have been written by me.  I call them my voices of reason.

I am far from politically correct.  I do not use racial slurs, accept all ethnicities, beliefs, and religions, and will never disrespect a woman.  But I also understand that there are people who were raised and taught to be bigoted.  I generally ignore those people.  And I do not normally get upset hearing someone refer to Asians referred to as “oriental” in spite of me having two daughters of Chinese descent.  I know that “oriental” is a style of rug, and I will not waste time trying to undo what people have been taught.

This is the problem that social media and the internet does not address, how to emote feelings with the typed words.  Sorry, emoticons and “feeling like…” at the end of a post do not count.  The internet has been a great source to communicate information, such as health stories, feel good stories, helping to find missing children, and especially news issues that we seem to have lost faith in actual news agencies to report without a political bias.

It would just be nice to have a normal conversation about something that mattered.  And if someone was upset about it, before the first “OMG are U friggin’ kidding me” is sounded, the issue could be clarified before things are said that go too far.

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