Tuesday, June 18, 2013

Living among strangers


We have vacationed with other families that we know.  It is different than going out to dinner together or going to a party at their home.  It is far more intimate, seeing friends first thing in the morning, before anyone has had the benefit of coffee, or a hairbrush.  But if you choose to vacation together, you at least have some idea of what you are getting into.  

In this parallel universe we have joined, it is interesting, living among strangers.  Cancer is an equal opportunity disease. There is a cross section of society on a cancer floor.  You encounter all sorts of people, like spending the afternoon at the BMV.  

But then you bunk with them, in all your glory.  And theirs.  

As an institution, hospitals are in the business of healing, of helping folks return to health.  Part  of that involves tapping into the support of family, recognizing that our emotional health partners with physical health.  So, in addition to meeting all sorts of people, you meet all sorts of families.  And, as I like to say, 'families are messy,' which is a euphemism for "there are idiots in the world and someone has to be related to them."  

From my observations, tricky family dynamics are not suddenly simplified by stressful circumstances...they are magnified.  Cancer is pretty darn stressful, and like holidays, a reason for families to be thrust together.  Here is the gasoline...where is the fire?

In a hospital, they are forced to serve as a maitre d' putting patients, and by extension, their families in very close proximity to one another.  There are a host of variables that must be considered...the sex of the patient, the infectious considerations of both patients, their age, their likely duration of stay...  I imagine it is like the bride and groom trying to plan the seating arrangement for their wedding, but considering only certain qualities of the guest, like whether they select beef or fish.  

I did not pre-arrange seating at our wedding, and discovered at the reception that an uncle of mine who incidentally, had extracted his own teeth, was seated next to our dentist, who enjoys near iconic status in our family, evidenced by the fact that he attended my wedding. (premarital counseling in our family includes some very sticky questions...do you intend to convert to Dr. Hummel? If not, how do you intend to handle the dental upbringing of the children?)  I can only imagine what sort of conversations these two struck up.  But, even if it was less than ideal, it was only one night, one meal, and at least there was wine.

Point being, that in hospital, when all sorts get thrown together in a rather intimate and stressful situation, separated only by a curtain, it is less than ideal...and unfortunately, can last a bit longer than one evening.  The food is nothing to write home about.  I still cannot find the wine.  

Add to that the myriad of variables regarding something as simple, and essential to healing as how you best sleep... (Lights on, lights off, tv on, music, what time do you retire for the evening...what time, given the choice, do you get up...) To the extent that your needs, and those of your child are in conflict with the needs of your neighbor, there is some requirement for compromise and consideration. Lets just say that some folks have a better understanding of the concept of consideration and are more amenable to compromise than others.

Add in the various reasons for being hospitalized...fever, chemo, surgery...and things get even more more complicated.  You may need to encourage your child to eat a lot, after surgery in order to heal, but the child next to you is nauseous from chemo.  Or your child is NPO, as Brent currently is, waiting for a procedure, and the boy next door is eating his second meal of the day, smells of forbidden food wafting over on our side of the room.  Your kid needs to sack out, beat up from a long night of chemo, and the teenager next to him, only in for a neutropenic fever, is trying desperately to connect with friends, skyping loudly.  It is a challenge under the best of circumstances. Pediatric oncology seldom offers ideal circumstances.

Over the past 2 years, we have had many opportunities to room with others (ha!) and I have generally been surprised with how well this is managed, and how most families have been kind and courteous. I hope that we have been the same.

There have been some striking and memorable exceptions, however.  The curtain may offer some visual privacy, but there is no acoustic equivalent.  We are the involuntary witness, 24/7, of the toughest times for other families, seeing relationships at their most strained and stressed...  It isn't always pretty, this forced voyeurism.  It can be awkward, trying not to hear the intimate details of the patient's treatment (what is the point of signing reams of HIPPA forms in this situation?) or pretending that you haven't heard the heated argument between stressed out family members.

In order to mitigate my frustration with people at such times, I remind myself that by virtue of being on this floor, on pediatric oncology, these folks are having a tough time, are under stress, and warrant special consideration.  I try to forget the fact that we also find ourselves on this same floor.  

And whenever possible, we try to laugh.  Brent, upon remembering a particularly difficult match, joked that getting C-diff was worth it, because he had to be moved for infectious control, and fortunately remained in a single. He was quarantined into some precious privacy, away from the challenge of dealing with others.

We start with compassion, but laughter is our fall back position.  Sometimes, with a bit of snark.






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