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Not Delightful

I can 1000% guarantee I am not a “delightful” patient.  I promise I try to be kind, but I HATE being there.  As soon as I walk into the hospital, I am irritable.  And as soon as someone asks me anything it shows. 

“Who are you seeing?”

“What?”  I asked as I leaned forward toward the hole in the plastic shield she was sitting behind.  She was masked and sitting down away from me when she spoke.

“WHO are you seeing?”

 “I don’t actually know, a stoma nurse.”

 “What? Where are they?  What floor? Are you the nurse?” 
Ugh.   I yell, “I AM HERE TO SEE A STOMA NURSE.  THEY DIDN’ T TELL ME WHO.  I HAVE TO CHECK-IN AT THE REGISTRATION DESK RIGHT BEHIND YOU.” 

“Okay” she says after taking my temperature. 

“Can my husband come with me?” 

“Only if you are unable to talk for yourself.” 

I wish I had responded with “Great!  You can come.” to that question.   This appointment was starting to feel emotional for me as Ted knew it would. 
The nurse came to get me from the registration area as tears were wetting my mask.  What the hell?  I’m not really a crier, people.  I’m sort of stone-cold a lot.   There’s been a lot of tears this week and honest to Allah, y’all, I know this is going to be okay.  I know it is.  I know I will make the adjustment and be absolutely fine.  I am truly 100% sure of this.  And I am so grateful for this surgery.  But, wow, what a whole lot of emotion this has brought up for me.

The whole thing was pretty weird.  The stoma nurse found me up in the waiting area and then, after a few exchanges with the registration person about paging him and lack of paging him and numbers exchanged, off we went.  That’s fine.  I don’t mind waiting.

We’re walking down the hall and someone runs up behind us and says, “Hey, remember me?” So exuberantly.  While looking expectantly at both of us.  The nurse engages this person and the person is still trying to engage me. I’m not sure the stoma nurse knows who this person is behind the mask.  I still have a few tears and have no idea what is going on. “Can I walk with you?” he says, the stoma nurse explains to the other nurse (guessing he was also a nurse) that I’m actually a patient.  Which, given I was wearing yoga pants and a dirty (really, it was dirty, like in an embarrassing way) sweatshirt I was surprised needed explaining.  Whatever.  The non-stoma nurse said, “Oh, oh, okay”.  And walked in the other direction. 

Then we went to get in the elevator.  5 people.  Two of whom didn’t appear to be health care workers, so I declined.  It just seems stupid to spend any time with five strangers in a box. I’m not getting Covid.

“Thanks for telling me,” the stoma nurse says.  BTW, He hasn’t told me his name yet. 

I’m not really sure where the hell we are going.  I’ve spent a lot of time in hospitals and this feels like the back end of the hospital.  The part that patients don’t usually see.   So, we take the next elevator.  The stoma nurse so kindly tells the doctor behind us not to get on but I say, “I’m sure you’re vaccinated, it’s fine”.  The stoma nurse was SO glad about this.  I didn’t get it.  

We get out of the elevator and walk past the men’s locker room, the engineer’s closet, the MRI imaging storage area, the women’s locker room, and a couple of other closets.  I AM hating this.   We finally turn into an “office” of sorts.  It has supplies that we need so that seems reasonable.  And a chair. 

The stoma nurse is named Afreesa, he is a tall older man with a heavy accent.  Maybe middle eastern, or Ethiopian?  He is kind.  For sure.  And helpful.  And so not who wanted to be my stoma nurse.  And I’m not sure who I wanted it to be; maybe my mom.   But Afreesa is totally fine.  He knew his stuff and was very reassuring. 

He was very matter of fact while also checking in on my “emotions”.  And I mostly didn’t have them after we started.  I turned on my stone-cold delightfulness.   I am struggling to understand about 20% of what he says but that’s okay.   I remind myself that it takes work to be humans together on this planet.  And I am glad for his grace when I ask him to repeat things.  He is kind.  We make it.  He’s pretty instructional in his presentation. Then he says, “So some people have their stoma lower so that blah blah blah and some have it higher so that blah blah blah. Where do you want yours?”  And. I. lost. it.  Tears just start rolling down my face filling my mask. “What?” I say, “Am I supposed to know that? How would I know where to put a stoma?  How can I know that Afreesa?  It’s for the rest of my life.  How would I know what I want for the rest of my life when I’ve never had the experience?  Or know any pros or cons of placement? How?”  A small fountain of stress poured out of me.  With too many tears again.  Poor Afreesa. 

“Okay, okay,” he says.   “Help me,” I say.  From my weird chair, in this weird room, down this weird hall.

So now I have two marks on my belly.  And I have no idea what the hell. (Ted and I talked about it after we got home, and I spent some time with one of his ileostomy bags, and that helped a bit.  I’ll spend some time researching with people who have them, too.)

Then I left.  And I cried going down the elevator. And found Ted and he held me outside the hospital.  Stupid emotions. 

We got home and the anesthesiology nurse called.  Oh, my goodness.  I’m am telling you, no one knows me in the system.   That’s what it feels like.  No one knows me. Let me be clear that all of the people I talk with are kind.  All of the nurses are amazing and are doing their jobs so well with irritable, non-delightful me.  All of them.  This is not a commentary on the staff but on the system and the system… wow.  It makes it very hard to have confidence and trust. 

She starts.  I am not kidding… 
“Okay….. so you are having surgery on….  ?”
“Monday, the 15th,”  I say.

“What medication are you on? Oh, let me see if what I have here is accurate”.

It.  Is.  Not. Accurate.

“Have you ever smoked?”

OMG. “Yes.”

“For how long? What year did you quit?  Did you ever vape?  Did you ever chew tobacco?  Did you ever something else, too? Blah blah blah”. 

And then all the same questions.  All of them. With the exception of “Why are you here today?”  Instead, it was, “What time is your surgery?”

Afreesa, the stoma nurse started out with, “Oh… I was looking at your chart and you were here in 2010/2011, right?  You work with Dr. Medwell?” 

“Yes but, not now. Dr. Medwell is retired, I work with dr. whats-his-butt”.

“Oh, yes, I know Medwell has retired.  Oh, so this is new cancer.  This is recent?”

FUCKING HELL.  I really, really want to be a known person to these people. Maybe I should start with being less irritable. I know that isn’t possible for them to know me, not the way it’s set up right now, but wow, what a difference it would make. I really want that for all patients.    

I will talk to every single person in that operating room and remind them of the type of surgery they are doing. And my name. I will tell them I have kids and that my kids are expecting me home.  And two dogs that are already feeling incredibly abandoned. I will thank them for being there and for being excellent at their jobs. I will thank them for their tenderness and care and their scientific brains.  And their hearts.  I will thank them for their hearts.   I trust the people but not the healthcare system. 

I’m okay.  I really am. 

I’m spending much of tomorrow with someone who’s been central to my life and whom I love very much. 

I might walk a marathon on Saturday after I finish the WS training in the morning.  But maybe not, too. 

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