When things go really wrong, I generally let people know. I have complained at hospitals in the past, with good reason, and often once treatment – or the emergency room visit – is done. If someone does their job anywhere from barely acceptable to very competently, I don’t feel there is generally a reason to say something. If they go beyond very competently, go out of their way, or do more than expected, that should be noted as well.

I am done with radiation, hopefully forever. For the most part the staff was great. Don’t get me wrong, the whole thing really sucked, but several of the people made a difference because they are in that beyond very competently category. Hence, I wanted someone to know.

Here is an email I sent to the director of the oncology radiation department and that person’s supervisor. Names have been changed to protect the cancer patient …

Director Smith, Director Jones:

As I am finished with my 28 workdays of chemo-radiation, I feel it is important and timely to relate to you some experiences with your staff during my radiation protocol. Professionally I am an advocate for others, it is time to internalize that.

I am under the care of Dr. Wilhelm Rontgen. Although one of the newer members of your team, he obviously belongs at a world class hospital. To this patient, he comes across as a professional, intelligent, willing to answer all questions, wanting to know the patient’s point of view and more. Unfortunately I have no way to evaluate his skills specifically relating to radiology … but he has my full confidence. Every interaction with him has been extremely positive.

Virginia Avenel Henderson was my primary nurse. She was also repeatedly the only one correct when I was given contrary information or advice (happened multiple times). She had the ability to sense how I was doing and ask the right questions (or refrain from the wrong ones), to offer helpful advice, and more. She is absolutely personable, caring, and empathetic (something unfortunately in very short supply). Seeing her most days (literally; not necessarily 1:1) was simply comforting; someone was nearby who could answer my questions, and who cared. She is perfect for that job and I appreciate her work tremendously.

It is important to note how lonely cancer is, from a patient’s point of view. No matter how many people accompany me to appointments or how loving a family one has, ultimately it is me vs. my tumor. That radiation table is a very lonely place.

That brings me to the radiology technicians (guessing at their title here). It is not my place, but I would love to know why they are always changing. This definitely adds to the anxiety and general not-great-experience. One saving grace is Kay. She was with me for about 25 of the 28 treatments. That consistency made a huge difference. There was one day with two new techs who, frankly, were awful at their job, did not properly introduce themselves, and made it a really bad experience. Kay always greets with a caring smile, an air of competency and professionalism, and again, she is a known quantity. The first weeks I often also saw Melissa, but that ended, and the last two weeks included Steven and Paula. I name these individuals because they also made it doable for me, made a difference, especially when there was consistency of their presence. When Steven asked me on my last day what I wanted to listen to, and I responded “anything loud and fast” he picked the perfect Def Leppard song. On balance there is a tech that caused me to decide if I saw her again I was going to insist she have nothing to do with my medical care in any fashion ever again. She is a detriment to your team. Seriously. But Kay, Melissa, Steven and Paula all made the effort to know my name, knew how to quickly position me, seemed to understand what I was going through, and made it all manageable. Even when I did not think I could manage.

And that leaves Lee Holloway. Anytime I mentioned her to anyone else, co-worker or patient, the response was always the same, “Isn’t she great?” She is, and she is a tremendous asset to that office. I have no idea what her title is nor her job description and I have seen her do multiple things, all with a smile. Somehow when I would scan my blue card she would know whether to say hello or not, she would know my mood (which, like many others, is always dependent on how awful I feel that day). She is professional, helpful, kind, empathetic, funny, and very intelligent. I knew she could not give me medical advice like Virgina, she could not position my on the table like Kay, but she absolutely could make me feel that there was real humanity in the office (and she is probably the only team member there who has not seen my bare butt … nor asked to … and that’s a plus – for both of us). I wrote this early on, before I even knew her name:

There is a young woman who is always at the front desk in scrubs and on a computer. I have no idea what she does, who she is, etc. She is right next to the device where I scan my card when I come in. Most days she looks up and gives me a smile. In any other setting I would know her name, and schmooze for a minute or two. I don’t here, I keep to myself and just get through it. As I was leaving yesterday she looked up at me and said “have a nice weekend.” It was the first time I heard her voice, but not the first time our eyes met. I really wanted to tell her how much that meant to me, but I didn’t, I just wanted to go home. This all sucks, but without Kay or the mystery (but consistent) woman it would suck much more.

Please buy Lee an iced coffee from me for all the kindness and occasional small talk. My biggest problem with Lee is that I am not a single, healthy, 30 years-old outdoor adventurer, and didn’t meet her in a coffee shop. Oh well. Life goes on (or so I hope).

-DisabledDad aka medical record #05A3692

You may be wondering what the response to the email was … it has been five days and total silence.

[Editor’s note: Actually, there is no editor, just me, but I digress. About 45 minutes after posting this the hospital’s patient relations office called, well, a woman in the office called. Very nice conversation!]

Ah, connections.

One of my claims to fame is that I had a conversation with the great Umberto Eco (author of the title of this post) while we were using adjacent urinals. Why is that an important fact, as he mentions in the above quote? I was introduced to him by my first wife, she who is mentioned in the previous post. And that post, about anger, etc., connects to its previous post (that would be the previous previous post to this one) which discusses my primary doctor and medical directives that fail as medical directives.

Got it? Let’s connect.

(Interestingly I have another claim to fame that involves a urinal and Babe Ruth. I will see if I can work that in at another time.)

One of the hardest parts of this journey to hell heaven restored health is the seeming incompetence of the support staff at the hospital. The absolute hardest, or most infuriating part, is having my body written upon without notice, permission or warning, but that will be saved for another time.

I do believe the support staff cares for the most part. By support staff I am referring to those who interact with patients and are not doctors. They may be nurses, technicians, patient relations, etc. Many seem to be good, caring people. And yes, many are competent and some are fantastic. Others want me to lie on a bathroom floor.

After Wednesday’s appointment with my primary doctor he wrote an email to the surgical staff that said I had questions about the directions for the pre-operation preparation. I don’t know if he admitted that he too had the same questions.

Thursday I was simply minding my own business, cleaning out an old office, and my cell phone rings. I notice it is from the hospital and, of course my first thought is “what the fuck do they want now?”

Hello, this is Nurse Athena and I understand you have questions about the pre-op preparation.

My first responses were filtered out by 50+ years of social training. “Yes, do you have instructions that make any fucking sense or are even possible within the laws of physics, time, and space?” was quickly deemed inappropriate. Valid, yes, appropriate, not so much.

Yes, basically they don’t make sense to me.

We had a good conversation, she was obviously familiar with the issues. She mentioned that she just changed her position and was working to modify these types of issues. She was also obviously familiar with my issues surrounding the cerberus II appointment since it was referred to once or twice.

Did we meet at that appointment?

Yes, I am the nurse practitioner who spoke with you about some of the issues.

Holy crap! This is the woman I wanted to contact afterwards but did not know her name, the one I told you about in yesterday’s post. A connection!

To be totally honest (hell, you knew it hurt when I ejaculated (which is no longer true) so I should not hesitate now with honesty) the conversation up to that point seemed a bit tense to me. I sensed something on her end, but not knowing who she was, and not knowing her at all, I knew I could not read too much into that. I am also used to getting calls from lawyers and school district administrators who are not sure how I will react and are a bit guarded. Maybe that was it, maybe she knew I was a very unhappy prick patient. The moment I learned who she was I understood what her first impression of me must have been. Again, I was livid that day. I kept it all under control but it was not hidden. She could not have any idea what I would be like on this phone call.

The conversation quickly took a turn. I apologized; she told me she totally understands where I was coming from. She said she has since learned more (when we first met, she had no idea of any of my trials and tribulations) about my experiences and why I was in the state I was in. I told her I wanted to reach out to her afterwards but neither Inanna nor I remembered her name or even that she was a nurse practitioner. Introductions don’t stick when your brain is melting down.

Turns out that we were both affected by our interaction and both bothered by it for a few days. I felt bad that I was so angry, whether or not it was justified. She felt bad for the same reason, it truly bothered her that one of “her” (my word) colorectal patients had reasons to be so angry and, in fact, was so angered. We commented that we both have great capacities for empathy (which, to be honest (again) I feel is to a fault (of mine), but that is another issue).

She assured me that I would be getting new paperwork that she is working on before my surgery and it would be properly vetted.

Yeah, that’s when I said it …

I would be glad to look at it before you finalize it if that would help.

I told her that I designed and implemented international trainings for Intel and Motorola, I give trainings and talks to school districts, have been a professor, etc.

That was Thursday afternoon. By end of day Friday I had already looked at two of their re-worked documents and put together a sample presentation to give them the idea of using several types of media to convey the important points.

In one of her emails to me (many going back and forth) she wrote:

I like the the word “enhancements” (not criticisms) because it highlights our collaboration on this project.

So there you have it. Connections. Connections among the last three posts. Connections with famous people and urinals, one at the urging of my first wife. But more important at the moment, a connection and a collaboration between an empathetic, intelligent, compassionate, and driven nurse practitioner and a cranky, empathetic, experienced, engineer / advocate / curmudgeon with a cancerous tumor up his ass.

Who’d a thunk it?

Actual email, only names have changed.