I am a Patient & I have had an Experience

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My treatment is over now and I am running out of excuses for naps, begging off obligations and almond croissants.  I am achingly exhausted earlier and earlier every day and I have been told this fatigue will continue for several weeks. This cancer treatment is killing my social life.

As my oncologist says, two minutes of radiation is like spending the day in the hot sun, so I’m lurching around with a version of constant sunstroke.  My boob is super itchy which is an annoyance but not debilitating. I asked the Radiation Therapists, why do some people get burned and itchy and some do not and they did not know.  I have no idea what research is going on over at that fancy Research Building across the street, but apparently it is not research on side effects like itchy boobs.

I promised not to be complain because I did not need chemo and I did not need a mastectomy and for those reasons I am lucky.  Or rather, I am a lucky unlucky person because I still have breast cancer and being diagnosed with cancer has really messed me up, mostly in my mind.  I hope this blog isn’t negative.  I hope I don’t sound like a victim. I’m just trying to be a real person.  My experience having breast cancer has been surprisingly complicated and not all pink ribbons and teddy bears.  It has shaken me to my core.

Two weeks ago, I had a voice mail message from a manager at the cancer agency.  Apparently someone had forwarded my blog and told him to call me to talk about my ‘experience.’  I arranged to meet with him and Mike and I showed up to his windowless office before one of my daily radiation treatments.

He was a pleasant fellow, new to his job.  It was clear I had been labeled a ‘complaint,’ when in fact I had not contacted them with a complaint at all.  I was only writing about my own personal experience for my own blog.  True, my blog is public, but it feels creepy that my blog is being monitored in this way.  I felt reported.  We chatted about the patient experience in general and I emphasized that I hadn’t complained, but that I did have some ideas for improvement.  He wrote down a few things and that was that.

Later, I asked the people who had forwarded my blog for an in-person meeting with them and suggested that maybe they could have asked me if I wanted to have a manager  contact me.  I would have liked some choice in the matter, as opposed to someone assuming I wanted a call.  I got the ultimate brush-off message back and my request for a meeting was totally ignored.

Feeling discouraged, I then followed up, sending on a couple of general videos about patient experience (this and this), asking to meet with the administrator in charge of Patient Experience.  I am a Patient and I have had an Experience after all.  I sent that email ten days ago and have not heard back. I can take a hint.

It has always puzzled me why patients with feedback are silenced and pushed away.  Don’t professionals learn through challenging situations?  Aren’t ‘complaints’ just constructive feedback that can be used to improve care and service?  Am I the most naïve person on earth?

With all this ignoring of my requests and emails, I’ve realized that I’ve been labeled as ‘difficult’ – maybe even ‘crazy’ or ‘hysterical’ (terms I’ve heard used by staff for families – usually mothers – at children’s hospitals).  This is humiliating.  As I told the manager, I want to help. Patients have good ideas and aren’t actually stupid.  But I do not have any credibility at this cancer place beyond being ‘only’ a patient.  To administrators, patients are a generic cluster of diagnoses, not real people with ideas or opinions.  We are all a bunch of nobodies.

It was silly, or maybe arrogant, for me to think they want my help.  When feedback from patients is solicited by hospitals, through tools like surveys and comment cards, it is okay.  But when patients approach them with feedback that is not overtly asked for, we are shut down, brushed aside, minimized, gotten rid of, seen as a problem that needs to be handled.  I see this now.  We are supposed to shut up and be grateful for care.  Me and my itchy boob will zip it for now and stop rabble-rousing with the organization (and please know that I am grateful for the care, and brought in nice chocolates for the Radiation Therapists to my last appointment) and move forward.

Maybe one day an authentic chance to give feedback will be offered to me.  I was given a patient satisfaction survey to fill out a few days ago, but it had only a tiny spot to write ‘one or two ideas for improvement.’  I dutifully scribbled in a couple of thoughts – about orientation and waiting rooms – but I actually have about 100 ideas for improvement, but there was no room for them on the page.  No matter.

Currently, I am sick of the whole health care system.  Now is the time for me to rest, begin healing and scratch around to find a little bit of peace in my heart.  There are books to read, walks to be taken, music to be listened to and, most important of all, people to love.  Thank you to all who have shown up for me.  xo.


5 thoughts on “I am a Patient & I have had an Experience

  1. Lelainia Lloyd says:

    Wow. Whomever read your blog & “reported” it-what were they hoping to accomplish? I totally agree they should have asked you first. As a rare disease & chronically ill patient, I am always weighing what I say or don’t say online for the exact reasons you’ve cited. I wish HCPs would stop seeing & treating us like the enemy. We could get so much more accomplished if we were treated like partners in care. (Smash the hierarchy, as it were.) Keep blogging your truth Sue, you are a force for GOOD, even if those who most need to recognize this, don’t. I find comfort in your words, even though I don’t have cancer because a lot of it is so relateable. It’s always good to know there’s someone else who GETS IT. When it comes to improving/changing the health care system, it’s slow going. I am reminded of the adage that water carves a canyon, not only because it is strong, but because it’s persistent.

  2. Carolyn Thomas says:

    Terrific essay, Sue. Personally, I’m impressed that somebody who works in your hospital read your blog and then actually made an effort to follow up. It means that at least one hospital employee was paying attention!

    Patients are encouraged to be “engaged” and proactive in improving healthcare: it’s now up to us, for example, to ask healthcare professionals to wash their hands before touching us, and then to ask what their names are when they neglect to introduce themselves. We do this in the hope that one day, if enough of us keep piping up, it won’t be the patient’s job to worry about hand hygiene or common courtesy in medicine.

    I once phoned the manager of the cardiology department at our local hospital after a particularly disturbing experience during a stress echocardiogram test. My own experience was over, but maybe I could prevent what happened to me from happening ever again to some other heart patient. I wrote about that experience here – https://myheartsisters.org/2015/11/15/carolyns-top-10-tips-on-how-to-treat-your-patients/ – and later heard from a number of friends who work at that hospital that they’d seen the follow up letter she had asked me to submit in writing actually posted on staff room bulletin boards throughout the building. So sometimes, speaking up really does seem to make a difference. We do what we can.

    Most hospitals insist that, yes indeed, they are patient-focused (and some even hire staff to prove it). In my experience, most people working in healthcare try very hard to be so, but willingness to listen to patients must be the first basic step.

    Keep on speaking up – we need your voice.

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