“Oh Shit!”, I muttered as I sat up in bed, searching for my phone, to see how long I slept.

It wasn’t on the bedside table, where I always put it at night. I clumsily looked around, before finding it underneath me, in bed, the battery dead.

“Mom?”, I called as I opened my bedroom door.

“Good morning sweetie”, she said.

“What time is it?” I asked.

“eleven”.

“Oh shit, oh shit, or shit”, I muttered on my way to the bathroom.

“What’s ‘oh shit’?”, my mother asked.

“My appointment with Dr. _(insert name)_ is at 12:00.”

“Don’t worry. If you leave now, you’ll be fine.”

“You don’t understand”, I yelled from the bathroom, “I have to get ready”.

“Well get ready.”

“I don’t have time.”

“You’re running late, but if you leave now…”

What Mom didn’t understand, what doctors don’t understand is this…

~

“Your hair is really tangled”, Mom repeated for the tenth time, as she tried to get all of the tangles out of my hair.

“Yes, I know”, I said, “I haven’t done anything with my hair in days.”

“Oh honey bun…”. She said.

Not only hadn’t I brushed my hair in days, I didn’t remember the last time I brushed my teeth, or washed my face, or…

It all seemed to be so much work. Those things that I did without effort before, have become work, that just doesn’t seem to be worth the effort.

I also hadn’t showered…

changed my nightgown…

gone outside…

talked to anybody who didn’t live with me…

I needed to phone the pharmacy to repeat my medication, find somebody to fix the eavestrough, make arrangements to switch our winter tires, phone my social worker with the cancer centre, and make arrangements to have enough food to eat.

All of these things, weighed on me, making life even harder than it already was. I can feel the importance of these things, know I don’t feel strong enough to do them, and understand the consequences of not doing them. It doesn’t make me do these things. It just makes doing them… doing anything…even harder.

~

Today it all came crashing down. I needed to get to that appointment. I’d already missed two appointments with this doctor (I tried to be at those appointments too). I couldn’t totally destroy his opinion of me by missing a third appointment, but I couldn’t go as I was.

He’d see the tangled hair, smell the stinky body, smell my stinky breath, and judge.

He wouldn’t see me as I am. He’d see me as an inconvenient problem who is socially beneath him, and not worthy of his time or attention.

Those times he discusses me with the team in the “interesting cases”, meetings would disappear. The input and phone calls I get (and presumably he gets) from other doctors about my unusual cancer would stop. I wouldn’t get the medical attention that I need, and I’d be left to deal with things on my own.

Because… If she doesn’t care about her health, why should we?

He wouldn’t see the sleepless nights, filled with remembering my father, and quietly crying, trying not to wake my mother up, but hoping she would wake up and comfort me.

He wouldn’t see the daily struggle.

He wouldn’t see, that although I am a mess and my life is falling apart I am trying as hard as I can.

I am not normally like this. I am kind, and generous. When Mom was sick the first time, I was super-daughter, rushing her to doctor after doctor until we finally got a doctor that was not only willing to diagnose her, but one that was willing to treat her normal pressure hydrocephalus (more about that here), and got her admitted to a rehabilitation ward in another hospital. When that was done, I arranged for her to have follow up care in our home.

All of this had to be asked for. Actually not just asked for, fought for. If you didn’t know how to fight for it, you were not given the best treatment.

When Dad was sick I took care of him for two years. I stayed up into the wee hours of the morning to take care of his symptoms, and many times I woke up just a few hours later, because he needed me again.

When anything needed done, I was called. Many times I didn’t even need calling. I just knew what needed to be done.

The myth that those who live with their parents do nothing to help their parents really upsets me. I live here. When I am healthy I cook. I clean. I nurse when sick. I stay awake when needed. I’m woken up during the night. And I don’t mind. I want to help my parents when they need it.

And they help me. They take care of me when I need to be taken care of.

But this doctor…

He doesn’t see all that. He sees me for 5 minutes in each appointment. He spends three hours operating on me when I’m totally out cold. He decides who I am and judges me worthy or not worthy of his time and attention based on that.

It’s important to be clean and well presented at each appointment.

~

Today…

Well I phoned the receptionist and asked if I could make another appointment and was told there was a cancelation at 2:00 pm. Could I go then? Yes.

I rushed around getting myself ready, and drove into the city.

I waited for 20 minutes behind an unexpected train.

And was late.

Admitting phoned and asked if I could still see him.

I could.

Mom and I walked to the examining rooms section of the hospital, was given one almost immediately (that hardly ever happens), saw the doctor and left about 5 minutes after arriving.

I felt so rushed, that I didn’t get to ask my important questions:

Did he get all of the cancer?

Did he think the cancer would come back?

Was the surgery hard to do?

How much cancer was there?

What do they do with the cancer tumour?

What are the stages of a cancer tumour? (Before my surgery, his resident mentioned it, but didn’t explain it).

But I didn’t ask, and he didn’t tell me. I was so nervous I forgot to ask, as he stood by the door, his hand on the doorknob, looking like I was so repulsive that he wanted to flee. He asked if I had any questions, and I forgot what the questions were. I said “no” and he left.

He did tell me “it looked good”, and that the cancer centre would “follow up”, and that I’d get “periodic scans” to insure there wasn’t “anymore cancer”.

And that was it.

~

I drove home. Or at least I should have. Instead it was very apparent that we had a very flat tire, once we walked into the parking lot.

We went to were we usually get our tires, stumbled through describing the problem (I don’t know why I had so much trouble. I’m not an idiot but the guy who works at the tire wouldn’t know that from that very awkward exchange) got a “used loner tire”, so we could go home, and were told we have to go in again when the tire they ordered for us “comes in”.

Then we went to the gas station but couldn’t find enough cash between us to get even $20.00 of gas, spent way too much time discussing and deciding if what we had was enough to get enough gas to get home, drove to the bank, drove back to the gas station, and drove back to the back to the town we live in.

Before going home, we got slurpies and snacks, as well as something, for super. As of 8:01 pm we still haven’t cooked it. And we might not. This might become one of those days we eat nothing but small snacks like beef jerky and coke, and get to bed by 10:30 only to start crying and finally get to sleep at 4:00 am, each of us trying to be quite, and not wake the other person, who is wide awake and trying to do the same thing.

We might get up and repeat the process of getting through the day with as little sleep as possible, not having the ability or interest in cooking or eating anything, and repeating the night before.

~

Doctor’s don’t see this. They don’t see the messy hair, because we don’t let them. They don’t see the sleepless nights because we don’t tell them about it. They don’t see the reason we aren’t eating because they wouldn’t understand in the first place.

They wouldn’t understand. We don’t even try to explain. We are doing the best we can, but they can’t understand that.

And then we get judged as uninterested / non-compliant / a bad historian or any other number of things they put in their charts about us.

And then the patients, who probably need their care the most, get pushed to the bottom of the priority list and get the least amount of care they are willing to give.

~

Note: This would be the end of the blog post but… although I always knew making a good impression to every doctor was important, these two videos reinforced it. In one the doctor is upset because the patient is not giving enough information, and in the other the doctor is upset because the patient is giving two much information. I’ve been accused of both. “You didn’t tell me about this surgery…”, one doctor said and at another time another doctor said “You don’t need to tell me about something that far back”.

~

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