“It’s very difficult to design something for someone if you have no einfühlungsvermögen.” ~Stewart Butterfield

Which brings us to a favorite word of mine, einfühlungsvermögen (it’s pronounced just like it sounds) or Einfühlung for short. Loosely translated, it means to be able to understand someone else’s feelings. But until 1909, there was no real alternative to einfühlungsvermögen in English. The British psychologist, Edward B. Titchener, thought einfühlungsvermögen represented a powerful concept, but realized it would never catch on if it couldn’t be pronounced. So he invented a new word, easier to pronounce and similar to the existing English word sympathy. He created the term empathy.

Empathy is distinguished from sympathy in that it is not just about the ability to feel for someone else. Empathy involves being able to take someone else’s perspective. Which brings us back to our working definition for achieving relevance:

Empathy is the ability to stand in someone else’s shoes.


I started as a [Boston University’s overall youngest tenure track] professor of engineering design and progressed into having my own engineering company designing computer type stuff (jtag in-circuit emulators, if you must know). For analogy sake, let’s say I designed microwave ovens. I would do the engineering design, user interface, etc. and see that it gets to market. After about four months, a new revision or version of it would come out. Why? What is special about four months? Why were some new features added and some fixed?

  1. Customer feedback / complaints?
  2. Catching up to a competitor?
  3. My spouse left town?

The actual answer is “3,” my spouse (or partner or roommate or chef) left town and I had to use the microwave myself. Whenever I used my own product for the same reasons as, or in the manner of my customer, or rather, the device’s end-user, I found all the problems and missing features. In other words, I had to be the customer / end-user, not the designer, to fully understand that I needed a “popcorn” preset.

Unless I walked in the user’s shoes, the design was not all it could be. Or needed to be.


Me in radiation therapy.

I have been in Truebeam for the last 24 weekdays. As you know at this point, I get up on that table, pull down my pants and manly panties, and lie on a white sheet. The machine projects three-green cross hairs. Two radiation therapists, one on each side of me, grab the sheet and coordinate pulls and tugs to move me into the precise position (i.e., each cross hair on a particular blue-dot tattoo).

Each set-up costs 3–5 million dollars. The machine, the table, the room with its 14 inch thick walls, the computer systems, etc. Oh, and the white sheet for tugging.

Give me $500 and a month and I will make it controlled with two joysticks. Better yet, for $1500 I will make it all automatic. Really. Design and prototype.  Better yet, a barter … I will give you a working prototype, you get this fucking tumor out of my ass.

My point? Truebeam designers have never been treated for rectal cancer with their device. Or they have never watched what happens when I get onto it. My experience in their machine is complete foreign to them; they only have their assumptions.


There are many sympathetic people in my big-city hospital (except for two who can use some major re-training). I respect these people and I guess I appreciate their sympathy, but if I thought about that more, maybe not so much.

Empathy? Nope. Nada. Crickets. Othing-nay.

Handing me an enema and pointing me to a dirty bathroom floor to take it on shows either a total lack of empathy or shows that one just does not care.

To get the tattoo targets I had to lie on a different machine, in a different building, with several techs around. And a young intern. I had little idea what was going to happen, I was told I would not feel anything. At one point I felt something strange on my skin. I had to ask what was happening and someone said they were “drawing” on me. Why not preface it with the truth:

I need to write on your skin a bit. It is not permanent but will take you about a week of scrubbing your skin raw to remove it. Ok?

I don’t know about you, but I honestly found that someone writing on me without my knowledge to be extremely invasive and bothersome. A simple “I need to highlight this spot with a pen” would work. Is it ok with you if your doctor needs to draw on your body for some reason and just does it? Your dentist? Gynecologist?


You don’t have to have empathy, nor sympathy for that matter. I have cancer and will let you do what you need to in the hopes that I survive. To a large degree your actions determine how emotionally difficult, how logistically difficult, my fight will be along the way. It’s the smallest thing that sometimes make the biggest difference.

What if this was you?

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Where can a guy buy a single tampon around here?

One of the scary side effects of chemotherapy (for me at least) is that it suppresses your immune system. I try to be very careful because I like my immune system and miss it. Early on I purchased the large size Purell hand sanitizers and decided to wash my hands after using the bathroom. The doctors insisted that I have any needed dental work before this treatment protocol started (I did and will post about that fiasco!) and I cannot have the needed tube put in my eardrum (seriously) until the chemo is done and out of my system.

I try not to be too paranoid, and I actually am not. I do wash or sanitize my hands more and I am aware of my surroundings. I don’t stay away from people per se but I don’t insert myself into crowds or interact with groups of children much (I stopped by a four-year-old’s party yesterday, my porn buddy‘s youngest) but kept my personal space.


Hospitals can be boring places, punctuated by moments of complete terror (or despair). I often go alone (my choice) and that leaves time to just think, which can be a dangerous thing. So, thanks to my good friend Steve Jobs, I bring a tablet, as many do. While waiting for blood results in a chemo chair, hanging out while Truebeam is being fixed or recharged, or whenever, I can browse the news, watch a movie, read a book, etc. When given the choice of thinking about rectal cancer or a rogue president, well, ok, those are pretty equal, but you get the idea.

A common side effect of my treatment is diarrhea which I pretty much have under control (glad you asked?) but I do need to use the bathroom more often than typical (for me). Additionally I need a full bladder during radiation and that often necessitates an immediate trip to a bathroom when I get off the table.

Putting this together, I am often in the hospital with a tablet and needing to (insert your favorite expression for using the bathroom, I like …) point Percy at the porcelain.

As explained in my post about the enema (the nightmares and flashbacks are receding) the bathrooms in the hospital are sparse. Most consist of a rather large room with a toilet, sink, a roll of rather thin toilet paper, and a wall pack of toilet seat covers (which this article says are fairly useless anyway). That is all that there is. So I ask you, what is missing? Or, to word that another way, what is the proof that there is no empathy in this big-city hospital?
    
So now I ask you, where do I put my tablet? I does not fit in the basket with the latex gloves (why the heck are they there anyway?), it does not balance on anything in the room, there is not even a toilet tank! I considered turning over the waste basket and using it as a small table but then I remembered that night in the motel room in Daytona Beach after the Grateful Dead concert and the trashing of the room, the cops and … but I digress. Alas, there is no appropriate place for my tablet, or man-purse, or anything I am holding, other than Percy.

So I put the tablet on the floor.

When I was done with my mission, I washed my hands (and yes I sung the Happy Birthday song twice), and picked up my tablet only to find it was a bit wet on the back. I wiped that off and needed to wash my hands again, so I put down the tablet (guess where) and washed my hands again …

How much is a fucking shelf? A small basket? Has no one in this big-city hospital ever given a moment’s thought to how someone who actually cares that they are immunosuppressed uses the bathroom? Is this a money making thing (the longer I am sick, the more they make)?

(Warning: this post is about to get deadly serious)

Healthcare-associated infections (HAIs)–infections patients can get while receiving medical treatment in a healthcare facility–are a major, yet often preventable, threat to patient safety. Together with health care and public health partners, CDC is working to bring increased attention to HAIs and prevention. ~CDC (follow this link for info and statistics)

Here are actual statistics from my the hospital providing my care:


All I can say is thank god I am not having colon surgery …

So you see, I am not very happy with having to use the bathroom floor as much as this hospital seems to continually want me to.


This past Friday, radiation day 24, I got off the Truebeam’s table, grabbed my tablet and was determined not to use the bathroom. I figured I could make it to my car and use a coffee cup or something … or better yet, make it home to my bathroom, WHICH HAS A PLACE FOR MY SHIT, so to speak.

I made it to the lobby of the hospital and I knew my plan was doomed to failure. I spied a bathroom and went in.

To my utter delight, this bathroom had a small vending machine! And the machine had a flat top! THERE IS A GOD! Now, the god just might be Baal (who was mocked by Elijah saying that Baal was in the bathroom) AND that god is potentially empathetic … but again I digress.

A vending machine!


Opps, wrong photo. That’s from my IEP Team meeting presentation. Here is the actual machine I saw:

For 50 cents I can get a sanitary pad, open it up, lie it on the floor and put my tablet on it! OR, I can put my tablet on top of the machine, and voila, a shelf! A shelf that charges a dollar for a tampon. Really?

So there you have it, some bathrooms have a multipurpose shelf. If it also sold condoms we would have a trifecta …

I have learned to ask “Where can I buy a tampon?” so as to find a bathroom that won’t make me interact with the floor. And maybe, just maybe, protect my fragile immune system just a bit.

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“So you’re an advocate, eh? … Then advocate for yourself!” ~(with apologies to) Max Bialystock

(I spent about eight or nine hours working to get this 25 second video clip and then put it here. And I have cancer. You have no excuse not to watch it. So there.)

Professionally, I am an advocate. I primarily do special education advocacy, working with families and school districts. I also do a good amount of work with bullying.

I am often baffled as to why parents (and often the student) will not complain to the school, only to me. It is very difficult to get a family to file a state complaint when it is fully justified. I am often asked not to say anything out of fear. I find myself explaining that problems don’t get solved without putting them “on the table.” What is it that people are worried about?

Retaliation. Yes, it is illegal and not tolerated but there is the fear they will “take it out on my child” or my favorite …

I don’t want to be labeled the difficult parent. I don’t want to be that parent.

Why not? If your child is not worth fighting for, what is left? I am a good advocate, I get references from families and from school district administrators, yet my hands are often tied.

Teachers and administrators do not retaliate against students for the vast majority of cases. I personally have never seen it. But people don’t want to “rock the boat or be that parent.”


I should have advocated for myself, and my health, when the nurse clearly voided any chance of changing my bandage in a sterile manner. I did not.

I should have advocated for myself when my first chemo nurse turned out to be a condescending, self-believed-telepathic, un-empathetic twit. Let me clarify …

I came to my appointment to start the chemotherapy as prepared as I was told to be. I had read all the materials that they offered and had already met with the oncologist. I did not have any questions going in. She started to explain the medication and was talking to me as if I was in middle school. I stopped her and said

You can speak on a different level. I read all the materials, I have three severely disabled kids in their twenties, and a lot of medical experience.

I will explain it all to you just like I do to doctors and will not skip anything.

I want to hear all you have to say, it is the level you are speaking on that I am pointing out, that’s all.

I will not skip anything.

Ok, whatever. She obviously did not hear what I was saying. I often say that to doctors and the conversation goes to a level where I learn a lot more and can engage. But alas, she continued like I was a kid that did not read the materials. It was a joke. She also told me very clearly to go home “today” and take a pill for nausea and take it every morning for the six weeks. This was in direct contradiction to the oncologist and one of my other nurses. (I never took the pills, never needed them.)

Next time I saw her, I said

I have a question about the two nausea pills and their differences.

That’s because you did not read the materials and did not listen last week.

She walked away, came back with a copy of the paperwork I already had, and told me to read it at home. And then she simply repeated what was on the paper. It was nothing like what my question was, which she did not give me a chance to ask. She assumed she that the question concerned when to take each one, when in fact my question was on the pharmacology of the pills. She did not bother to listen; she simply believed she knew what I was going to ask. She was wrong. This was all done quickly and with attitude. I did not interrupt her, no point. When I was done, I walked over to the where the pharmacists hang out with their chemo toys and asked them. They were great, and spoke to me as if I was an adult.

I can go on about Nurse Ratched but you get the idea. Trust me there is more.

I got a new nurse when my wonderful nurse practitioner got wind that I was not happy. So why did I not advocate for myself?

A special education teacher or a principal can’t really retaliate easily nor do they want to. There are many other people around, they know the parent and their (very smart, handsome, and suave tumor-enabled) advocate are watching. I do not feel the same about the hospital.

This hospital has a procedure they go through before they start the chemotherapy coursing through my veins. My chemo nurse replaces my catheter and before turning on the pump calls over another nurse. They go through a routine designed as a double-check of the medication, the pump settings, if I am the right patient, etc. Even the bag o’ poison has two signatures on it to verify two people know what the drug is, the strength, etc.

The way Nurse R. did it, any accidental error would, indeed be caught. But I noticed the first week, that if either nurse wanted to make a mistake (maybe in collusion with my tumor), they easily could and the other nurse would not catch it. There was a loophole in the routine. After my nurse was changed, I noticed a subtle difference in the way the routine was followed by others and it eliminated that loophole.

One thing that stopped me from advocating for myself in any of these situations is simply that in my case intentional retaliation is quite possible and can mean death. Anxiety when working with a patient who has complained or simply not wanting to work with a specific patient can be enough of a distraction for an unintentional error. Getting someone’s friend in trouble is not much better, and I have learned in life, you never know who is sleeping with whom.

***

Now that my nuts have stopped hurting, I don’t particularly want to die by a nursing error. But if it has to be death-by-nurse, do I get to choose?

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“The feedback I get is that my books are honest. I don’t sugar-coat anything. Life is really hard.” ~ Laurie Halse Anderson

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!]

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“Anyone who attempts to generate random numbers by deterministic means is, of course, living in a state of sin.” ~John von Neumann

Did someone say random

  • When I walked into that first radiology appointment for my tattoos, there were three people in the room. They were never introduced, never knew their names or jobs. It became obvious one was a student, possibly a medical student, not even an intern. I don’t know. Hope she enjoyed the show. I found that rude.
  • After feeling a funny sensation I finally asked what that was. It was a Sharpie marker. If you are going to write on me, at least tell me if you are not going to ask me. That really was wrong. Period. And rude.
  • If you have the ability to pipe in music, or stream anything during my radiation treatment ask me what I would like to hear and mark it in the notes. One tech asked me once, and remembered. Too bad they changed often and no one else asked. He nailed it though, thank you.
  • There is nothing like a hand written card. Really.
  • I like reading the news on my phone or device. I am finding that now I will much more often read a paragraph or two and just sweep it away thinking “why am I wasting me time reading this?” That is not a comment on the news itself, just my consciousness that life is too short to waste.
  • Running a group that consists of an overwhelming percentage of women caregivers is a good thing when you are diagnosed with cancer. It helps if they like you. I have no idea how to thank them even though they say they are thanking me.
  • Pearlsky is starting to realize that something is going on. I need to spend more time with her, have to figure that out. Sooner rather than later.
  • I got a call yesterday that I need to get a flexible sigmoidoscopy. I simply asked “Is that another camera shoved up my ass?” “Basically” she said. It’s not so bad, no anesthesia or anything. Since the tumor can be felt with the doctor’s finger, he is not going very far. Something to look forward to.
  • Most side effects are pretty much gone, but the exhaustion. I don’t get it … my mind is fine, but my body is really tired. I look spaced out at meetings but am fully in tune.
  • Dr. Pye, my oncologist-hematologist is wonderful. I really like and respect her. At work she works with patients such as me, trying to prolong my life if not simply save it. At home, she is praying for her little boy who was born several months early and is still in the neonatal ICU. She is pretty much exactly middle age as well (does not look it! and that is purely numeric). I think about that and my respect, empathy, and appreciation grow. I am keeping her boy in my prayers.
  • At this point, my life is in the hands of the surgeon and he is up to bat in seven weeks.
  • Surgeon’s have interesting personalities. Inanna has a theory … it is because they cut people open every day. Yeah. I think that makes sense.
  • I think I will have an affair with a former playboy model and not cover it up. Or I hear good old Stormy is getting divorced. Wonder if this old curmudgeon has a chance. I do have a glowing penis from all the radiation. Sort of. Oh, wait, that’s my personality that’s glowing. Never mind.
  • If When I get to the other side of all this crap, alive, I will probably be a different person in some ways. I don’t think major ways, but yeah, different.
  • My Amazon wish list (in case I just can’t wait any more):
    • X-ACTO Knife set
    • Selfie stick with mirror
    • Rectal speculum
    • Bullet
    • Krazy Glue
    • Disposable absorbent blue pad
    • Bio-hazard zip lock bag

I wanted to end this random thought post with a random video in my Youtube collection for absolutely no reason.

Eight years ago there was this thing where people would take a clip from a foreign movie and add subtitles that were, well, not exactly what was being said. A very popular target was a clip from a movie about Hitler. At that time I was blogging about incredible problems I was having with a Durable Medical Equipment (DME) company and Pearlsky’s wheelchair. They actually had to deliver it three times to get it right. A $7000 wheelchair, finally delivered by the vice president in person. Being a geek at heart, I jumped on the bandwagon and made a video clip from that same movie. IT IS NOT POLITICALLY CORRECT. It has what some people will consider BAD words (concerning disability, not curses). It was made when I was a blogger in the disability world. If the concept of making fun of Hitler bothers you, if seeing Hitler using words that are not politically correct bothers you, then end this post now! Otherwise … see what Yiddish he knew …

Maybe he needs to rant about chemo-radiation next …

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“Without faith that there’s a world beyond the one we live in, I don’t see how it’s possible to get rid of angst.” ~Robert Smith

Quick review …

At the first Cerberus meeting I met my hematology / oncology doctor, Dr. Pye, along with the surgeon and radiologist. I was impressed with her and very glad she drew the short straw and I was her patient. A couple of weeks later Inanna and I had an appointment with her and learned more, it went very well. I did a bit of research, she is well respected, very intelligent, and everything one wants in a doctor.

My first day of chemo I was to have an appointment with her, but it turned out that she had some medical issues herself and was out for a while. I took this in stride, sort of, even though it was very disappointing. I was assigned to another member of the chemo team, and this doctor, Dr. Chemo2 was very impressive as well. Ok, I can deal with this, but I was still hoping that Dr. Pye would be back for my after-surgery chemo.

Once my chemo-radiation was finished I received a call for my cerberus II appointment, again the radiologist, surgeon and chemologist (?). The scheduler mentioned yet a third chemo doctor and I made it clear that was not acceptable. Why a third? After some studdering she scheduled Dr. Chemo2. That was ok, I liked him.

A bit later I needed a chemo appointment and saw Dr. Pye! She was only back for a short time. We discussed the upcoming appointment and she said that she may be able to be there but was not sure. She checked the 3:00 time. The odds are she would not be around after my surgery though. We agreed that I should see Dr. Chemo2 since he would be stuck with me responsible for my post-surgery care and potential chemo. Dr. Pye would try to attend if it worked out.

That evening I looked in the patient portal, and Dr. Pye was listed! The appointment was scheduled for next Wednesday, 3:00 PM. I was able to choose that time to make sure that Inanna could easily attend as well.

Last week I got a call telling me the surgeon wanted me to have a flexible sigmoidoscopy, a camera up my butt. Ok, fine, and it was scheduled for 12:30 next Wednesday, before the cerberus II appointment.

A bit after I got that call, I got an email with instructions. The email started “Dear Mary,” … that is an actual quote, I did not make up that name, and no, my name is not Mary. Not even close. They actually sent me someone else’s email. I certainly hope a gynecologist does not walk in with a flexible anything …

This is what I knew:

  • Flexible sigmoidoscopy (with or without Mary) at 12:30
  • Cerberus II appointment at 3:00
  • Chemo hematologist: Dr. Pye (if possible) and potentially Dr. Chemo2

And that brings me to today.

I looked in the patient portal to double check a different appointment. I noticed a couple of things …

  • No flexible sigmoidoscopy scheduled
  • The cerberus II appointment was moved earlier to 1:15
  • Dr. Pye was the only chemo doctor listed; it also says, and this is a direct quote, that Dr. Pye is “Out of office through 10/22/2027”

No angst here. I am just the fucking patient with the cancerous tumor and they are changing appointments, canceling appointments and not telling me. And no, it’s not chemo brain. At least not on my end.

Of course it takes three calls to kind of figure out what is going on.

The flex sig (that’s the lingo those in-the-know use) is scheduled at 1:15 but what the portal does not say is that I need to show up at 12:30 so in fact the flex sig is for 12:30; but my butt won’t be violated for 45 minutes. I guess they don’t put that in writing. And, without telling me, the appointment with the three doctors is immediately after the flex sig, so in fact that appointment is listed as 1:15, but is really 1:30, and yes, changed from 3:00. Without telling me. The victim patient.

Actual schedule (maybe) for the day:

  • Flexible sigmoidoscopy (with or without Mary) sometime between 12:30 and 1:15
  • Cerberus II appointment at 1:30
  • Chemo hematologist: No clue even though it still says Dr. Pye who is out for the next 3370 days!

So, when the scheduler said:

how about scheduling the flex sig for 12:30?

and said NOTHING ELSE ABOUT THE OTHER APPOINTMENTS what she really meant but DID NOT SAY was

we can make the flex sig for 1:15, change the three doctor appointment to 1:30 and need you to get here at 12:30.

Never said any of that. Did not put that in the patient portal.

I don’t know which chemo doctor will be there, Dr. Pye had said the 3:00 time was potentially possible. Did they check with her? That was weeks ago before listing her as out until 2027. If it is not her, will it be Dr. Chemo2? Are we back to the mystery doctor behind door number 3? If a third doctor shows up I may lose my shit. I have a relationship with these two, for what that is worth. And since my life is in their hands, it is worth a lot. To me. The fucking patient. I am already really not happy about this. I don’t need more angst in my life, thank you very much.

Inanna now needs to take time off work to make the appointment. And it is a damn good thing I happened to look, otherwise she would have missed it and that is not a minor thing.

  • Who changed the appointment?
  • Why was it changed?
  • If it changed because of the flex sig time, why was I not told when I agreed to the 12:30? (This is the same shit they pulled when my radiation was scheduled for daily appointments and no one told me the relationship to the weekly chemo appointment. That’s another rant for another time.)
  • Why does the patient portal say nonsensical things?
  • Who the hell is Mary and does she have my email? Will we be in bunk-cots and have dueling flex sigs?

Color me not happy.

Seriously. This one will be keep me up tonight. Is it too much to know what doctor will be there? Am I asking too much?

If you work in a hospital, IF YOU WORK IN MY HOSPITAL, watch this four minute video. Really. Please. As if my request means anything.

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