Topic: Hospital

Big city hospital, big city successes and big city failures.

NOTE: Posts within this topic are shown in chronological order, the oldest first.

It’s not what you write, it’s what they read

When you write a letter, an email, an opinion piece, a blog post, etc. what you write is not as important as what the recipient reads. A recent opinion piece in the local paper was an attack on the school administration yet was mostly read as an ableist piece against students. I tell people all the time, proofread things through the reader’s eyes. (There’s that empathy thing again.)

This goes for websites as well. Especially patient sites. I am using my hospital’s (“my” as in the one I go to, not the other one that I own) (ok, I don’t own a hospital) patient portal and, well, it actually makes my life more difficult than if I did not use it. I know I can be a curmudgeon but hey, I have cancer, be nice to me.

I want to show you what I am dealing with. Keep in mind that I do a good amount of web design but this is not about my thinking I can do it better (and hell yes, I can) but it is about showing issues and maybe this will work its way back to the designers. This blog is anonymous, I do not want to call out the hospital or its IT department in any way. The ONLY changes to these screen shots are proper nouns and phone numbers. Really. And I will do my best to not offer opinions, only facts. Let’s see how that part goes.

Note that I get emails saying …

You have an upcoming appointment with one of your health care providers. Please sign in to the Patient Portal to check your appointment schedule on your Home page.

Here is the important part of the home page. I sign in and see this along with a main menu, etc. but this is the prominent center of the screen:

We (me and you, aren’t you lucky?) are going to look at various parts of this from many points of view. The information it conveys (or does not), ease of use, accessibility, validity, etc. Clicking on the images will enlarge them if you so desire.

Demoralization and crushing of hope

Note that the “Care Team” on the right side of the screen is made up of doctors and providers who I have seen and am working with. It is vital to note, they are not doctors I have not seen, it only shows those providers for whom I am already a patient.

Every time I sign into this site I see my surgeon (extremely highly regarded) telling me that

Colorectal Cancer is the #2 killer …

Number 2 after what? Natural causes? Am I going to die? This is not an advertisement telling others they need to check for colorectal cancer because if you see these words you are already being treated by a colorectal surgeon! WTF. I have colorectal cancer. Pretty much everyone reading those words has been diagnosed with colorectal cancer. Let’s remind me I am dying. And yes, I have read the rest of the paragraph.

Hey, pal, do you know the time?

(Ignore the 9:00 AM CAT scan for this discussion.) I have been told that I have an MRI at 9:30 in the morning. The written notice I received clearly says (bold is in the original) …

… arrive in the MRI department 45 minutes before your scheduled exam start time.

And during the reminder phone call the gentleman stressed that I …

… must arrive an hour before, at 8:30.

So what is the essential time in this case? The patient portal is there for me to see my appointments as the referenced email states. It appears that in this case, the 9:30 AM time is completely moot. That is not when I need to arrive, and if in fact I arrive at that time, they will have to reschedule me (according to the gentleman on the phone).

This item on the schedule for 9:30 is problematic unless I remember to get there 45 60 ? minutes early. How to remember? I cannot write it on the home page to which I am supposed to refer.

I know what you are saying … “Just click for instructions as it says!” Ok, I will, and this opens up:

Well that is not terribly helpful.

But wait, there’s more! What is that in red? Why is there any text in red and what does it signify? And a “CLICK HERE” … seeing that I always do as I am told, I will click yet again for some instructions (but not on the red, that does nothing) and this comes up …

Good. I feel so much better instructed now. I don’t have questions, I don’t know that the time on the home page is wrong-ish.

So what time do I show up?

Who? Huh?

I have the cerberus appointment on Wednesday. Who will be there? Well, it appears the wonderful Dr. Pye will be …


But whatever you do, DO NOT LOOK ON THE RIGHT SIDE OF THE SCREEN SHOT … DO NOT LOOK AT THE “CARE TEAM” LISTING …

Damn, you looked.

Dr. Pye appears to be out of the office for the next nine years, which is actually a good thing since I hope to be alive in nine years and that date, B”H, will be my 70th birthday. She will be my present! But will she be at the meeting on Wednesday? If not, who will be taking her place?

Excuse me, huh?

I know you are looking at the CARE TEAM list and wondering, is there any way to edit the list? Can I add or remove doctors? Of course there is, just look at the bottom of the CARE TEAM column.

Here is it clearly noted that your providers are automatically added to this list “after you’ve had a kept appointment …” I know what a kept woman is (not that I have any experience in such things) and I know all too well what it is to be verklempt, but a kept appointment? Heck of a place for a past participle … And if you click on Edit Providers, you can remove someone from the list but neither add nor change anyone. Is that editing or removing? Definitely not kepting.

Flexible? I can bend in all sorts of ways.

Let’s not forget about my flexible sigmoidoscopy on Wednesday. I need to be there at 12:30 PM for it to happen at 1:15 PM for my 1:30 PM cerberus appointment. You can see that clearly in this part of the schedule …

“All the truths of mathematics are linked to each other, and all means of discovering them are equally admissible.” ~Adrien-Marie Legendre

Most, if not all, web design “best practice” lists specify that links should be highlighted in some way and all formatted alike. The classic is underlined blue text, but that is becoming a relic for many reasons. For accessibility, readability, understand-ability, etc., links should look and work the same within a site. It is simply best practice.

Here is my home page on the Patient Portal with all links (that I can find so far) highlighted.


Let’s see how links are identified:

  • Blue virtual-buttons with white text
  • Bold black text with “(Click for instructions)”
  • Bold black text without “(Click for instructions)”
  • Blue-ish text with no decoration
  • Blue-ish text, underlined

A designer could argue that the schedule listing items are not true links (<a> tags) but are list items (<li> tags) but this is only a partial and weak argument, especially with some having the additional, although somewhat fallacious “Click for instructions” instruction. Five different link-identifying styles? None explained. Simply stating “Click on a scheduled item for further information” would work since all minimally open up to show the location of the scheduled event.

(Here is a fun thing to try … see the handicap logo at the top right of the browser window? It has always been there. Click on it and click on “UNDERLINE LINKS.” Then CLOSE. You will now see four links in my previous paragraph. Didn’t know they were there? Pretty useless having links you don’t know exist, huh? Now undo what you just did or it will drive you crazy.)

Speaking of accessibility

There are Web Content Accessibility Guidelines (WCAG) put out by the W3C Web Accessibility Initiative (W3C WAI) under their tag line “Strategies, standards, and supporting resources to make the Web accessible to people with disabilities.”

Web Content Accessibility Guidelines (WCAG) is developed through the W3C process in cooperation with individuals and organizations around the world, with a goal of providing a single shared standard for web content accessibility that meets the needs of individuals, organizations, and governments internationally.

The WCAG documents explain how to make web content more accessible to people with disabilities. Web “content” generally refers to the information in a web page or web application, including:

  • natural information such as text, images, and sounds
  • code or markup that defines structure, presentation, etc.

The U.S. Department of Education mandates that school district websites be accessible and has several initiatives in this matter. It falls on the Office of Civil Rights to enforce this, and they do.

Section 508 of The Rehabilitation Act compels federal government agencies to make all of its electronic information and technology fully usable by people with various disabilities. This means that websites, software, webinars and PDF user guides, to name a few examples, have to meet specific accessibility requirements to comply with the law. The revised Section 508 refers to the Web Content Accessibility Guidelines (WCAG) 2.0, Level AA.

Although Section 508 as it’s written does not apply to the private sector, nor does it apply to recipients of federal funds, some funding agreements have nevertheless incorporated the requirements of Section 508 as a condition of receiving funds. For example, Medicare and Medicaid rules state that healthcare institutions receiving reimbursements through these programs must make program information “readily accessible” to the public. In the most recent update, readily accessible information is defined as “electronic information and services which comply with modern accessibility standards such as section 508 guidelines, section 504 of the Rehabilitation Act, and W3C’s Web Content Accessibility Guidelines (WCAG) 2.0 AA and successor versions.”

When I run my home page in the Patient Portal through a standard Accessibility Checker against WCAG 2.0 AA I get 15 errors and 3 warnings. Those numbers are a tad misleading because, for instance, there are 92 instances of “Info and Relationships 1.3.1” flagged as errors and 17 warnings. There are 8 warnings of insufficient color contrast.

Ugh.

Let’s do a quick review

  • Depressing information: I have the #2 killer of bloggers and other mere mortals
  • Bad information: Dr. Pye will be at my appointment
  • Misinformation: Dr. Pye is out for 9 years
  • Missing information: Flex sig anyone?
  • Lack of information: When appointments really start
  • Confusing information: Where links are; what is clickable
  • Accessibility: If the hospital has patients with disabilities, this may be an issue

And this is only two information boxes out of many just on the home page.

No, I don’t have way too much time on my hands. I have cancer, you know. The number 2 killer of crotchety bloggers.

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“When I wake up in the morning, I just can’t get started until I’ve had that first, piping hot pot of coffee. Oh, I’ve tried other enemas …” ~Emo Philips

[Trigger alert: sarcasm ahead]

Seeing that I am a man’s man, a manly man, a man’s kind of man, I am very nonchalant and totally unconcerned about tomorrow morning’s CAT scan followed by an MRI.

I have no issues about taking an overnight laxative tonight. A self inflicted enema tomorrow morning, no problem! Getting to the hospital an hour early to drink a quart or two of not great tasting something, I laugh in it’s face! Lying in a CAT scan for about 20 minutes, then the MRI …

Before entering the room for the exam an IV catheter will be placed to allow access during the exam for the use of an IV contrast agent called gadolinium. The IV contrast agent will be injected toward the end of the exam and will increase the information obtained. If you have any questions about the use of contrast agents for your exam please contact the MRI department.

Once inside the exam room, a Radiologist or Nurse Practitioner will place a small plastic tube called a catheter into your rectum. A liquid barium contrast agent will then be injected through the catheter and into your rectum and will remain there until the exam is completed.

I am so fucking excited I could just shit.

Why does one have anxiety about a medical test? The test itself will not change anything about my body or health (for all intents and purposes). The fear of the test itself may be from not knowing what the test entails. In this case, I know what it entails; taking a laxative, giving myself an enema, getting an IV in my arm, getting a shot (somewhere), having a catheter shoved up my ass, receiving a bolus of barium via said catheter, and then lying in a tube so small I can’t move my arms for close to an hour. Of course there is no anxiety, I know exactly what will happen.

Would there be fear of the result which some people will know immediately yet I need to wait two days? That gives two days of waiting which always just sucks. But again, that is not too anxiety producing. And whatever my status is tomorrow during the test is what my status is as I write this. The difference is not in my tumor, it is in my knowing.

So what’s the anxiety thing, which of course a man like me does not have?

The CAT scan and the MRI are tomorrow. The flexible sigmoidoscopy exam is Wednesday. The results of all three follow an hour later during the cerberus II meeting. No anxiety there.

What we will learn:

  • Exact location of the tumor
  • The current size of the tumor
  • Has the cancer spread to the lungs (easier to write “the” than “my”)
  • Has the cancer spread to the liver
  • Is surgery even worth doing?
  • Is it true that there is no tumor, but we found Judge Crater?

By the way, Judge Crater disappeared the actual day my father was born, and both events were about 3 miles apart. Hmmmm … and tomorrow, the day of scans, is both my day’s birthday and the anniversary of Judge Crater disappearing. Coincidence? I think not!

Ok, so now that we have totally reasoned away the thought of anxiety or fear we can move on with our life. Oh, wait, don’t know if we can. I don’t know if I can move on with life, but I may know on Wednesday, two days after others know.

I hate this shit. Where’s my medical marijuana …

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“Insanity: doing the same thing over and over again and expecting different results.” ~author actually unknown

I showed up at 8:00 AM for my CT scan. I was told to follow the orange dots on the floor to the proper waiting room, as opposed to the green squares to the MRI waiting room. Yes, even I can do that. After a minute or two a nurse came in with my elixir to drink and asked if I wanted an IV inserted or to use my port. I forgot about my port, good idea! Close to 9:00 I was brought into the CT room, I lay on the table, and spend all of six minutes in the donut shaped machine.

Then I follow the green squares on the floor to the MRI waiting room and yes, the fun begins.

If you have not read about my first MRI experience, with the enema surprise, you really need to read that now. After my nurse practitioner heard about the experience, and then I showed her the post, she (with permission) shared it with the hospital and I got a call apologizing. Hence, make sure you remember my needing to give myself an enema on a bathroom floor, etc. before continuing to get the maximum amount of enjoyment at my continuing perverse adventure.

Again I am the only one waiting in the MRI waiting room. Within a few minutes a nurse (MRI technician?) comes out and I notice she is holding a piece of paper and … wait for it … an enema! She asks my name and birthday, confirms with the paper she is holding and tells me I need to give myself an enema. I specifically ask her where I am to do it and she points to THE SAME FUCKING BATHROOM. I then told her I gave myself one two hours ago at home and she saved the enema for another patient.

So now you should be aghast. The hospital called and apologized that they did the same exact thing twelve weeks ago hence I expected a different experience this time.

Last time I was dejected, mortified, and scared but figured it out. Unfortunately I did not get pictures of that actual bathroom and as the other post says, that is a similar bathroom. This time I was just pissed and disgusted, but I took pictures! Here is the actual bathroom where patients of this world class, big-city, ivy league teaching hospital are expected to give themselves an enema:

 

The astute among you will ask why there is a picture of me over the sink … no, that’s a mirror. It proves I was actually in this bathroom. But there is something the super astute of you have noticed …

But first, ENEMA 101. The result of a properly administered enema is minimally the expulsion of the contents of one’s rectum. It is typical that said expulsion is both liquid and solid. When properly done, said expulsion is done in a toilet. Note that there is a toilet in this bathroom. When said activity is occurring, solid and liquid is falling maybe six inches into water of unknown quality. Due to physics and fluid dynamics the toilet water will splash and soon it will be intermixed with said ex-contents of one’s rectum along with any bacteria, pathogens, sex toys, what-have-you. This leaves unsavory and unknown droplets of liquid on the buttocks of the enema-ee, possibly the back of the upper thighs, scrotum or vulva, and anything else placed within the porcelain ring.

Now that you have the picture (you’re welcome), you understand that the next thing the enema-ee does is reach for the super thin single-ply toilet paper to do whatever cleaning is possible. After a through study of absorption, fluid dynamics, and squeezing the Charmin, you will find that some cleaning does get accomplished and some dirtying of one’s hand(s) and fingers occurs as a result; contaminated with all manner of fecal matter and associated clean-challenged water.

Back to the astute observers reading this. What else do you see in the photos? What’s that you say, something on the faucet?

 

A Post-it® note! Wonderful. Good news? The report on my CT scan? A reminder that I have rectal cancer?

But nooooooo …

So let’s review:

Three months ago I get handed an enema and shown pictures on how to give it to myself. I am told to use this very bathroom, with no place to lie down but the floor. This is so objectionable that the story of this goes from my nurse practitioner to patient relations to some administrator in radiology who reaches out to me to apologize.

Three months later, today, I am given an enema to give myself in the same bathroom. A bathroom that still has only a floor to administer said enema, but the bathroom does have a modification. A SINK THAT DOES NOT WORK. NO PLACE TO WASH ONE’S HANDS AFTERWORDS.

As I said, I gave myself an enema in the comfort of my own home earlier in the day and did not need to be demeaned by the total and complete lack of empathy on behalf of these so-called professionals. I used some soft two-ply toilet tissue followed by a brief, but effective, shower.

Readers of my blog concerning me and Pearlsky are well aware of the fact that I hate idiots. I have refrained from saying that here, and will continue to.

The MRI went fine with respect to the procedure itself. I was actually able to relax inside the machine, let’s just say better living through chemistry is more than just an expression.

We will get the results on Wednesday, in two days.

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“I have a lifetime appointment and I intend to serve it. I expect to die at 110, shot by a jealous husband.” ~Thurgood Marshall

(Gotta love Judge Marshall)

The hospital called today.

This is a reminder that you have a 1:15 appointment tomorrow with Dr. Hunter and Dr. Pye.

I said thank you and that was it.

The patient portal says:

Three doctors at 1:15. That is the cerberus II appointment.

This is from the email I got about tomorrow. Note that the name “Mary” is exactly how the email came, and my name ain’t Mary, and the bold is in the original …

Dear Mary,

This email is to inform you that your Flexible Sigmoidoscopy appointment with Dr. John Hunter has been scheduled for the following date:

Wednesday, August 8, 2018 arriving at 12:30PM for a 1:15PM procedure.

…

I did get the same email a bit later with my real name and the same information. It is a 10 minute procedure, at the most, but not the appointment with three doctors. So no reminder of the flex sig and it is not in the portal. Or is it all one appointment since Dr. Hunter is involved with both?

I will get there at 12:30. Dr. Pye will show up over nine years late, and lord knows why Dr. Roentgen will be there or when.

And yes, I am anxious. At some point tomorrow I will find out the results of the CT, MRI and flex sig. I will learn if the tumor has grown or shrunk (or is it shrank? … The past participle is the form of the verb used in the present perfect tense, which shows action completed at the time of speaking, hence shrunk should be correct.) Has the cancer spread to the lungs or liver? Did the chemo-radiation make any difference at all? Has the tumor miraculously vanished and I’m just full of shit?

Everything I know points to some good news. My nuts no longer hurt and the assumption is that the tumor is no longer hitting some otherwise useless nerve and hence has shrunk. Other than the last two days, my bowels seem to be functioning more like my baseline of a year ago (late yesterday and today I believe have left over effects from the laxative and contrast). My CEA level (cancer marker in blood) has gone down. I am not dead yet.

And what Plato says, That there are few Men so obstinate in their Atheism, that a pressing Danger will not reduce to an acknowledgment of the Divine Power… ~Michel de Montaigne, French Renaissance philosopher and essayist

Hence, now that we know there are no atheists in a situation such as this, it is only appropriate to research if there is a prayer for my czar of a tumor …

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“I’m at a loss for words. But even my loss is amplified.” ~Talib Kweli

The best I was able to piece together was that I was having a flex sig today (visual inspection of the tumor) and a meeting with the three doctors afterwards. As I have stated, times were changed without consulting me, I did not know which doctors would be there, the patient portal had it all wrong, etc. But I need to do this if, in fact, living is more important than dying.

I really tried to start the day fresh, new. I was going to get good results, no enemas in parking garages, etc. Good start, good attitude, good god … So I look up the flex sig email and check the portal to piece together when and where I need to be.

Here is the email telling me about the flex sig, and again, it said Mary, not my name, but another followed, all the same words, exactly, except with my name (highlights as in the original):

Dear Mary,

This email is to inform you that your Flexible Sigmoidoscopy appointment with Dr. John Hunter has been scheduled for the following date:

Wednesday, August 8, 2018 arriving at 12:30PM for a 1:15PM procedure.

Please report to the Endoscopy Suite located in the Stone Building, 3rd Floor. Please use the 123 Main Street address and park in the A Garage.

Flexible Sigmoidoscopy Preparation

Important: Five days before the procedure– Discontinue aspirin, Ibuprofen, Motrin, Advil and Nuprin, any aspirin products STOP. Tylenol is permitted.

Items needed for bowel preparation:

2 Fleet Enemas (You can purchase this product over the counter at CVS, Walgreen’s etc.)

Before going to bed administer one Fleet Enema.

1 hour before the procedure administer the 2nd Fleet Enema

If you have any questions or concerns, please do not hesitate to contact me directly via email or telephone.

Thank you

And the patient portal for today:

As you can see, both say the same doctor at 1:15, the surgeon. But the locations are on different sides of the hospital campus. That can’t be. So I call his office. I ask what appointments I have with the doctor today and they tell me just the 1:15 at the Cohen Medical Center as the portal says. I ask if I have a flex sig today and she does not see it. I ask her to double check … a few minutes later she gets back on the line and says yes, in the Cohen building, also at 1:15.

So the email has some errors in it. I can deal.

I took (?) an enema last night, and the email goes on to say that I should take one “1 hour before the procedure.” OK, the procedure is at 1:15, I should take the enema at 12:15. I know my math. The email also says to arrive “at 12:30PM for a 1:15PM procedure.” 

Because of traffic and what-have-you, I plan on parking in the garage about 15–20 minutes before I need to be in the right office to take into account walking into the hospital, etc. Working backwards:

  • (1:15 PM) Have the procedure
  • (12:30 PM) Arrive in office 45 minutes before procedure
  • (12:15 PM) Duck between cars in garage and take an enema
  • (12:10 PM) Pull into hospital garage
  • (11:45 AM) Leave home

Their procedure as outlined in the email necessitates that the enema be taken in the parking garage, where else would anyone be 15 minutes before they must be in the office? Do I not do that? Do I get to pick and choose which directions I am to follow? But then, I am in the wrong garage (or the right garage). Maybe the garage in the email has a special enema-room? If so, is it gender-blind? Co-ed? Will I run into Mary? Do I want to?

I walk up to the reception desk and the young lady asks my name and birthday. She looks me up and says “You are 45 minutes early.” I ask if she knows I am here for a flex sig and she says she does not see that in the record. I explain my call earlier and the email. After searching a bit she says she sees it in the record, but there is “no one back there now.” I believe the look on my face is what convinced her to go in the back and check. She returns and tells me the nurse will be right out.

The nurse comes up to me and honestly before I said a word she just looked at me and said, “You look upset.” She told me the doctor will be here at 1:15, I should just wait; I asked why I was here at 12:30. She said,

As a rule, we ask all the patients to get here an hour early.

Go ahead, read that again. Yes, she really said that. I sort of lost it, in a respectful way. I asked lots of questions such as why Inanna has to leave work 45 minutes early for apparently no reason. Why I need to sit out here on my ass when I could be home doing things. I asked why I got an email with all this bizarre information. She was relatively speechless. She did take a copy of the email (above) and shook her head. She did apologize for things she had little or nothing to do with.

Another woman called me in and took my weight and vitals. She then took me to the exam room, it was 12:42, I looked, and she honestly said to me,

You will need to wait. The doctor is not here yet, you came early.

When the nurse returned I shared that with her, and told her what I thought of all this. I think I was still polite, but can’t be 100% sure.

At 1:00 two other women came in, I believe one was a nurse practitioner, the other was not introduced. The NP asked what was going on. When I pointed out the instructions on the email she said “So you did not do the cleaning procedure.” She made it a statement, not a question.

Of course I did, but it was not possible on your time schedule. I did it right before leaving the house a bit more than an hour ago. That’s your fault not mine.

Then I pointed out all the other errors and she photocopied the email. It was about 1:10 PM and she asked what else she could tell me. I looked her in the eyes and said,

Did my tumor shrink?

Did the chemo-radiation work?

Has my cancer spread throughout my body?

She said she would get the doctor right away. At 1:30 the other woman popped her head in the door and said the doctor was with another patient and the two of them were stationed right outside that door to grab him right away. About 1:45 he came in with the radiologist. No Dr. Pye nor any oncologist.

The CT and MRI showed the tumor shrank a very little bit. That is better than growing, by far, but still a bummer. They did not seem worried about it. All of the lymph nodes have shrunk, except one higher up which was enlarged, but again, they were not overly concerned. My liver and lungs are clear. So the original plan is still on, surgery in September, then 3–4 months of chemo.

Then on to the flex sig. No anesthesia or anything. Basically bend over and a camera goes up your one’s my butt. Not pleasant, not awful. And no, not enjoyable. During that exam the doctor was pleasantly surprised. From that angle he could see that the tumor significantly shrunk. It is basically gone (from the inside of the rectum) and all that is left is an ulcer. This is good news, to say the least. The tumor is still there, and from the other side of the rectum, about as large as it was when this all started. All in all this is good. This is why they do the various tests and scans, to see from all different views.

Then a conversation with a nurse about what to expect around surgery. Basically that will all suck. I will need to give myself injections daily for a while after surgery, different meds, etc. I have a packet to read to get prepared, can’t wait.

An oncologist came in, I have met him before, he is substituting for Dr. Pye. I like him, so no problem. He added to our knowledge as to what to expect.

No one goes through this un-scarred.

I may have bowel problems, erectile problems, bladder issues, or just stay ugly. Chemo will start 4–6 weeks after surgery, that would be around November 1. If I heal quickly and well, the ostomy bag may be removed before chemo starts otherwise I will have it during the 3–4 months of chemo. The way it looks now, I will go in for chemo on a Monday and get a couple of hours of infusion and then go home with a chemo pump for 46 hours. Then 11 days with “nothing.” Then repeat for up to four months. Because I did so well on the pump with the 5-FU (and actually I did relative to many others) he does not expect my chemo to be too bad. For what that is worth.

He said that I would come in on Wednesdays and have the pump removed. I said that I could do that easily my self, just pull it out of the port. I said it seriously with a bit of a smirk. He explained the seriousness of the sterility. I told him the story of the nurse with the pager and he was literally aghast. He asked for her name, I hessitated. He asked again, said he needed to know, and I knew from his face that he did. I told him. I then said I did not know why I did not say something when it happened and he shared a story of his own, when he was in a similar situation and did not say anything. And regretted it, as I do.

My doctors are top-notch, there is no doubt about that. But there are so many issues with the support staff that I am getting more and more uncomfortable. Other than the documentation here, I don’t know what to do. For many reasons, changing hospitals is not a good idea, and no guarantee it would be better. There is a woman in patient relations who has seen this blog, knows who I am, and things don’t change. No one has said any of my feedback is wrong, the staff I tell agree that things are outrageous. And here I am, supposed to take an enema between a Ford and some mini-van. Luckily the Ford was brown.

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“Affliction comes to us, not to make us sad but sober; not to make us sorry but wise.” ~H. G. Wells

I started the blog about me and Pearlsky, DisabledDaughter, for several reasons. Many people mentioned that I needed to write a book about my life with her, I needed an outlet, and I wanted others to know what it was (is) like. I succeeded. I received many emails from other parents with severely disabled kids that thanked me (often profusely) for saying what they were thinking; they believed they were alone with those thoughts. I found the blog to be personally cathartic, a great outlet. And because of who I am, helping others also made me feel good, useful.

When diagnosed with rectal cancer, I knew I needed an outlet, hence this blog. My intent was solely the same, personal catharsis and sharing information. The anonymous part, I learned previously, is very important in allowing me to speak openly. This blog is a bit less anonymous, I guess age has made me less worried about what people know.

Unfortunately, this is turning into a bitch session about the hospital. That pisses me off, actually, but it is a vital part of the story. My life really revolves around the fucking tumor in my butt. And everything about the tumor is tied to the hospital. The hospital and doctor’s orders are as much a part of the story as my fears and pain are.

The really fucked up part is that the hospital staff, OTHER THAN MY DOCTORS THEMSELVES and one or two nurses / nurse practitioners, are the biggest problem I have right now. It is incumbent upon me to manage my own health care. I actually am in the position where I must pick and choose what instructions to follow since I am given contradictory ones. So I share. I am sharing my fears, my pain, my frustrations. But I did not want this blog to be anti-my-big-city-hospital. I keep it anonymous because they are not the point, but they are the primary cause of my angst. I can deal with a cancerous tumor better than I can deal with getting contradictory crap-instructions.

My next post or two will talk about the pre-op instructions I have so far. So not to be much of a tease, here is a preview, again with apologies …

This is a scan from the prescription sent to my pharmacy and shows the exact wording on the bottle:

There are six pills. The instructions are:

  • 2 tablet(s) by mouth once a day
  • Take 2 tablets by mouth at 5pm, 6pm and 11pm the night before your surgery

Okay then …

I am not sure why the hesitation to have “2” force the word tablet to be plural, but I digress. How do I take 2 tablet(s) once a day AND take 2 tablets at 5pm, 6pm and 11pm the night before surgery? Those two instructions are direct contradictions. If in fact they are not contradictions and if in fact they make sense, this native English speaker with multiple college degrees does not understand them so they may be correct, but it is still a problem because I don’t know what the fuck this means.

I guess if sundown that day is between 5pm and 6pm then I can take two at 5pm because that is a day, and then two at 6pm because that is erev surgery (evening before surgery, some people believe a “day” starts at sundown) and that will in some way allow the 5pm and 6pm doses to be different days. When it gets to be 11pm it will actually be the next day somewhere (I can call my buddy in Australia, I think it will be the next day there), so with the international dateline taken into account, and channeling his time zone (I would rather channel his youth and rugged good looks but that would be silly) I can rationalize the third dose being a different day. But then I violate the “night before surgery” instruction, so that is moot. Maybe my good friend Steven Hawkins would have a solution to these instructions, but unfortunately he is gone and wouldn’t it be embarrassing if he too was baffled?

What is that you say? Reach out to the doctor? I can’t. If I send an message specifically to the doctor via the patient portal, a nurse answers the message. And at times it is the nurse who gave me the information to begin with. There is no way to get in touch with the doctors directly. I have tried, and failed.

Yet again, it is up to me to manage my care and decide which instruction(s) to follow.

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