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.