Remember that I have colorectal cancer, and between you and me, I am somewhat … nervous. I log in and this screen comes up:

Under my surgeon’s name it says “Colorectal Cancer is the #2 killer …” Is this supposed to make me feel better? I am to assume that it is my doctor’s talent that keeps it from being the #1 killer? Is this some advertisement for the doctor who is already my doctor? Additionally, wtf?

Then, under my hematologist/oncologist’s name is says she is out of the office for the next nine years, returning on my birthday. Nine years? Really? I spoke to her yesterday, did I scare her off?

Yes, this is going to be an adventure. Welcome aboard.

The post If it’s on the Internet it must be true. appeared first on Disabled Dad.

I go out to breakfast and show up at the hospital at 9:00. First up is the CT scan. They have me sit in a small waiting room and bring me a quart of some liquid to drink. The tech warns me that it does not taste great but it is “ok” and I need to drink it all. If I had been told in advance, I would not be full from breakfast. “If I had been told …” is to become a common refrain.

I drink it all over the half hour, put on a gown, lie in the machine and get scanned. Not too big a deal, only takes a few minutes.

Next I go to the MRI waiting area, I am the only one there. After a few minutes a woman comes out, introduces herself, and tells me the doctor would like me to have an enema to make sure he gets clean pictures. Ugh.

Have you ever given yourself an enema?

No, I never had the pleasure.

She then hands me a gown and a Fleet enema, points out the instructions, points to the restroom and tells me to come back to the waiting area when I am done.

I look at the instructions, and here they are:

So I am thinking “Hey, colorectal cancer ain’t that bad! I get some new experiences.” So I study the directions and head to the bathroom.

Here is a picture of a similar bathroom. It was fairly large and had a sink and toilet, nothing else.

Having multiple engineering degrees, and in my youth being close friends with Isaac Newton, I understand that water flows downhill and one cannot take (get?) an enema standing up. That just won’t work, and besides, I don’t see that on the box. So, let’s take a look:

I go out to ask the tech a question, and of course, she is gone. I come back into the bathroom and I start to think what would work best … I am tired and could use a bit of a lie down …

But that may not be good on my back. No problem, there are other options …

There is no way I am getting on that floor. But then I remember, the waiting area is empty and it has carpet! Perfect.

If one doctor, or one tech, or one administrator was a patient there, I bet things would be different. But they are not.

I close my eyes before I am slid into the MRI machine and don’t open them until we are done. I went to my happy place; next time I will go to Pearlsky’s happy place first and borrow some valium …

Tests are done and it is six days until the big appointment. I pray I don’t get an urgent call to come right in over the next few days.

The post Autocorrect is my worst enema. appeared first on Disabled Dad.

About two minutes into the procedure …

And this is when the fetus went into distress so we stopped.

Ok, so what are the takeaways here?

• Gordon is a schmuck
• Ultrasounds are not inherently safe
• Three weeks later when Gordon took the machine home to re-test with new software, I gave my notice

I showed up for my 1:15 PM radiation treatment on time today. With a full bladder. Yes, I do what I am told.

Turns out one of the two radiation machines was not functioning properly and they were trying to run all the appointments on one machine. The broken one was the one I am scanned on …  We were given the offer to skip today and add a day at the end of our treatment; I decided to hold out for extra frequent scanner miles and a free drink.

Once they said the engineers were working on the machine, I knew we were in trouble.

After an hour and a half, keeping my bladder full, thank you very much, they called me. They actually took me to my usual machine, the broken one. All I could think about was the ultrasound machine from so many years ago … Did they re-calibrate the massive radiation monster I was about to lie under? Did they fully test whatever fix they needed to do? Don’t they first want to take that skinny guy in the waiting room who never talks?

I am met by two young women technicians I have never met before. The routine is the same, I get on my knees on the table, drop my pants around my thighs and lie face down. I lie there with my lack of belly not really hanging through the big opening in the table and my junk in a cup. I lift my hips, somehow my briefs go down and the machine swings around over me.

A green cross-hair is projected on me and they need to line up my three tattoos with the green lines. This is done by the techs grabbing the sheet I am lying on and pulling. Usually they need to move me just a bit and three or four pulls and we are all set. These two were not so adept, I finally said that this is all wrong and we started again. I shifted into what I felt like was the correct position. That did not seem to work too well for them either.

After another couple of pulls I simply said …

My bare ass can’t be that distracting.

Want to bet?

Nicest thing said to me in years …

The post “The ass is the face of the soul of sex.” ~Charles Bukowski appeared first on Disabled Dad.

Adults, from ‘typical’ to whack-a-doodle, also rely on consistency.

Would you be comfortable showing up for your six month dental cleaning and there is a new hygienist? How about going to get your hair done, and your hair stylist is not there and someone unknown will cut your hair? Do you prefer to go to a random mechanic every time you need one or do you go to the one you have grown to trust?

Everyday I walk up to someone sitting in front of two computer consoles who asks my name and birth date and has me confirm that the picture on one console is of me. I walk around the wall into a room with a rather large machine and that person, and one or two others, watch as I drop my pants and lie on the table. Then one of them, I never know which, lowers my skivvies, and two of them shift my position around; it’s easier to move the target (me) than the gun (giant radiation machine).

Save for Kay, they are often different, new (to me) people. Kay has been doing this for 20 years, she lies about her age (there is no way she is over her early 40’s), has a smile, confidence in her job, professional demeanor, and makes it feel ok. She has been there for 9 out of 10 of my sessions. I have no issue with whatever part of the routine she is doing. I cannot explain how unsettling it is that all the others just come and go. The same team each day would make a significant difference.

This isn’t a haircut or teeth cleaning. This is a very personal, humbling activity that includes the aiming of a gazillion megawatt beam of radiation. This concerns life and death, literally. Mine.

When it is two younger female technicians (and I do not disparage them by mentioning female because in the context, that matters) (and although I say younger, they may very well be fully trained, eminently competent, but they are not very experienced) and they have much difficulty getting me in position, it would have meant the world to me to see a familiar face … how dare Kay have a day off. I was disappointed in myself and how much it bothered me. Why did I not leave and come back when others I trusted were there? Oh yeah, can’t do that. It will just be other new people.

There are many great people in this hospital. Many who have sympathy, but few, if any, with empathy. They just don’t see what they do through the eyes of the patient. Is it really necessary to continually change the technicians? I am on the same machine, at the same time, every day.

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.

Here you can see yesterday’s scan, and yes, I shaved my beard.

The post Structure, consistency, or random crap appeared first on Disabled Dad.

I arrive at 8:15 AM for my 8:30 appointment. I am scheduled to first see the doctor and the NP. At check-in I am sent to the treatment area, not sure why and I don’t want to miss the doctor. Although I tell them about the schedule, they take my blood pressure, weight and height (I guess they worry my height will change weekly … I am more worried about my radiated length). Then I sit in the comfy chair.

One nurse comes by to take my blood from the port … but my catheter and pump are still attached. Then she gets in a discussion with another nurse as to why they are only doing a basic Complete Blood Count. At this point my chemo nurse (and one day there will be a very long post about her) comes in and says to me “Didn’t we decide to take your blood work from your arm?” to which I answer “You did, yes, but no one is asking me anything.” Then a third nurse decides to take my blood and asks why they don’t just do a finger stick. I repeat that I am to see the doctor at 8:30. It is 8:40 and I don’t really give a shit how they take my blood. Or what they need to test for. Obviously they are not sure. But no worries, I am the one with a fucking cancerous tumor in my colon.

I go back to the waiting room and then get called in. I have not seen the nurse practitioner for a few weeks, I like her, and it is great to see her today. She then tells me the doctor cannot see me, he was called to another part of the hospital. I just rolled my eyes and told her that I was already very aggravated, this does not help. I spend a bit venting to her; she seemed surprised at some of what I was telling her. I told her about the friendly enema situation, about the random techs, the apparent complete lack of communication among the staff (blood from port? arm? finger? CBC? full chemistry?) and how although sympathy abounds there are no hints at empathy. We discuss my meds, my mood, my stool, my ejaculations, my sun worshiping, my itching, etc. … you know, all the topics one discusses on a first date. She takes copious notes (or doodles, I could not see). I actually like her a lot, I trust her opinions and knowledge, and she does show empathy. And humanity. I am still perturbed that I had to leave her with some questions to ask the doctor, who, did I mention, could not make the appointment?

I go back to the comfy treatment room to have the catheter replaced, etc. I have been dealing with itching around the site for a while. Not over the port itself, but more under the tape. The port area must stay covered to 1) hold in the catheter and 2) keep the area clean and dry. I really don’t want an infection around the needle.

Did I say “needle”? Here are two views of the same type of port, the device under my skin. And here is the catheter and needle. You can see the needle within the plastic tube/sheath. It looks rather long to me.

No one is sure what to try to stop the itching I am having, so they call in the big guns. Her card says “RN, BSN, VA-BC” and “Parenteral / Enteral and Venous Access Consultant, Nurse Coordinator CVL Service, Patient Care Services.” She is the self-proclaimed “Port Authority.”

At that point I had my shirt off and she was standing in front of me staring at the area. Not saying anything, not touching, just studying it.

Now I know how women feel when someone is starring at their chest. My eyes are up here.

She smiled and kept studying. There was a short consultation with my chemo nurse and then a plan. The big question is what is causing the itching. Is it the tape, the Tegaderm (or newer fancy-shmancy IV Clear), the skin cleaner, the skin protectant, or is it all in my head? The new covering tries to avoid the area that itches, can you find it?

Then it is off to radiation where they have a bit of an issue positioning me again, but finally I am irradiated and I get to go home. Irritated and irradiated, three and a half hours later.

Eleven radiations down, seventeen to go.
Twenty-four more days of chemo.

And yes, my nuts still hurt.

The post Don’t you do this everyday? appeared first on Disabled Dad.

Germs are bad, right? We all know that. This sterile thing is important. We like clean, we are in a hospital.

As you know, there are some skin issues around my port so the covering gets changed more than weekly. That is fine. I recently was under the care of a nurse who is not my chemo nurse, but she does have a special title and loads of initials after her name (and no, not Port Authority).

Each nurse has their own little rituals around doing this in as sterile a way as possible. Generally they cover the area around the port with a clean blue cloth like thing. On a tray they lay out a sterile covering and on that is the kit with the sterile dressings, tape, etc. The kit is opened and the nurse dons sterile gloves and begins. First a swab is used on my skin …

And then their pager goes off. Ok, that is not an official part of the ritual but in this particular case, her pager went off. Got the picture? And she reflexively reached for her pager and checked it. Sort of like this:

That is NOT the actual nurse at the actual time. It is a picture found on the internet, and the closest I can find to the real life incident. Close, but not the same.

Quiz time … why is this picture not the same as what happened? In other words, what is this not showing?

In real life, THE NURSE HAD HER FUCKING GLOVES ON.

That would not be a problem if she then removed them, put on new ones, and continued. But as Mr. Bill says …

She did not change gloves. Keep that thought.

One study from the National Institutes of Health (NIH) says this about “orthopedic attending and resident cell phones” …

Of fifty-three cell phones, 83% (forty-four cell phones) had pathogenic [disease causing] bacteria at initial testing, 8% (four cell phones) had pathogenic bacteria after disinfection, and 75% (forty cell phones) had pathogenic bacteria one week later. The mean result (and standard deviation) at initial testing was 3488 ± 2998 relative light units, which reduced after disinfection to 200 ± 123 relative light units, indicating a cleaned surface, but increased one week later to 1825 ± 1699 relative light units, indicating a poorly cleaned surface.

There are many studies such as this. Yes, I know a pager is not a cell phone, but close enough.

We also need to note that it was a reflex on the part of the nurse to look at her pager. I saw what happened, the pager beeped and she instinctively put down the swab, reached down and unlatched the pager, then used both hands to interact with it. She has been doing this for many years. And I have no doubt (although no proof) that she does this wherever she is, in the bathroom, eating a meal, etc. She then snapped it back in its holster, picked up the swab and continued to change my dressing.

I know what you are thinking.

So, Mr. Big-Shot-Advocate-Single-Dad, why did you not say something?

I have not lost my filters yet. My brain was yelling “Are you fucking kidding me?!” but the filters kicked in. Then I reworked it to “What the hell are you thinking? I did not know that KMart sells nursing degrees” but the auxiliary filter kicked in. Then I figured that the cancer will probably kill me anyway, so what are a few germs between friends?

I will soon post more on why I did not say anything, and yes, I was wrong not to, but alas, I did not.

She continued with changing the dressing never realizing that she totally messed up. Literally. Putting my health in danger. Don’t forget that my immune system is currently suppressed.

When my regular chemo-nurse changes the dressing, I am not allowed to look at the area because she does not want me breathing on it for fear of contamination. 

I don’t have a stay-put option, you fuck up and I die.

The post Paging Dr. Pasteur, Dr. Lister … anyone? appeared first on Disabled Dad.

I arrive at 1:05 with a full bladder to find a sign that says “All appointments are running 30 minutes late.” Well that pissed me off, so to speak. My choice was to go relieve myself and start again (causing my appointment to be even later) or hang in there. So I paced a bit, distracted myself and did ok. Kay finally came out to get me.

I walk up to the computer control desk area, tell them my name and birth date, verify that the picture on the monitor is me, and go into the room with one plan: get on the table, get a gazillion rads of radiation throughout my pelvic girdle, and be on a toilet within eight minutes.

There is an older woman in the room, I don’t know who she is, and I start to get on the table.

You can’t get on like that.

What the fuck? Who is this woman and what is her problem? Does she even work here? Does she have a name? A clue?

You need to remove your pump, you can’t get on with your belt like that. You need to lower your pants.

I stood there dumbfounded, staring at her. But alas, dumbfounded for about five seconds. Unfortunately my filters kicked in.

I’ve been doing this for 22 days, I am getting on the damn table.

And I did as usual. Lowering my pants, etc. as always, once I am on the table. Then Kay came in. They positioned me and for some reason there was a problem with the position and the pre-scan imaging took a bit longer than usual. Finally I heard the lovely sound of Truebeam doing that Godzilla atomic breath thing. Two 45-second scans, I pull up my skivvies, pull up my pants, hop off the table, and on my way to the toilet I quietly say to Kay, “That other woman is a moron.”

Cancer should not be this difficult.

The post “That other woman is a moron” ~me appeared first on Disabled Dad.

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.

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?

The post “It’s very difficult to design something for someone if you have no einfühlungsvermögen.” ~Stewart Butterfield appeared first on Disabled Dad.

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.

The post Where can a guy buy a single tampon around here? appeared first on Disabled Dad.

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?

The post “So you’re an advocate, eh? … Then advocate for yourself!” ~(with apologies to) Max Bialystock appeared first on Disabled Dad.