Stephanie’s Story

Site created on July 6, 2019

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Newest Update

Journal entry by Stephanie Malia

So a few disclaimers before I start:  I will attempt to keep my language tame, but those who know me well will know where I would have inserted an F-bomb or some other appropriately inappropriate curse word.  While I'm complaining about the current medical system I'm under, please know that I've had overall good experiences with the people I've encountered, but the system seriously pissed me off today.

Today, I had to attend a mandatory chemo class before starting my treatment.  It didn't matter that I had already been thoroughly briefed on the treatment and possible side effects two years ago; it didn't matter that I had gone through all this...crap...before.  Because I hadn't gone through the process with this particular hospital, I had to do it all over again.  It shouldn't have been a big deal, but it was, and I'll tell you why.

I didn't need someone telling me that I was going to spend five and a half hours in an infusion chair.  I didn't need someone telling me that my hair was going to fall out.  I didn't need someone telling me that I might get nauseous and fatigued.  I didn't need someone telling me that the steroids might make me feel hyper or grumpy.  I didn't need someone telling me that I would get constipated (Did y'all Google it like I suggested in my last post?)  I didn't need ANY of this, because THIS IS NOT MY FIRST RODEO.  And to add insult to injury, I had to sit through this with a bunch of strangers.  It was a forced support group.  Any mental health professional will tell you not to force that...stuff...on someone.

Besides, shouldn't I get credit for time served?  Shouldn't there  be some kind of credit by exam type of situation here?  Nope.  Instead, I had to sit through a PowerPoint presentation (with some serious grammatical and formatting issues) that did not provide one iota of new information, comfort, hope, or entertainment.  But I was polite and remained quiet and listened.  I understand that the other twentyish cancer patients and caregivers were getting all this information for the first time.  And I felt for them.  But, frankly, I felt more for me.  I have an infinite number of days before this tour of duty starts, and the fact that I was required to give it up for a system that doesn't account for or respect individual experiences pisses me off.

And deep down, I understand why today was a big deal. During this process, there is very little I have control over, and there's a lot that I have to accept and push through.  I know that a positive attitude makes all the difference in how this journey goes, but there should be some things over which I have control.  There should be times when the individual, the person matters more than the system, and today was one of those times.


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