Monday, 24 August 2015

I've forgotten what day it is. And some hospital stories.

I remember that I made pancakes. But I didn't remember if that was today or yesterday.

I remember I ate two pancakes today that was left over. And then I thought, maybe it was earlier today that I made pancakes...?

But, I had to go in and check the dates on the blog, and it was yesterday I made pancakes. And that feels very strange. Probably because I got no proper sleep.

So that means, I haven't eaten anything today, except two pancakes. and

I made macaroni and blood pudding with ligonberry jam.

I notice that I cannot taste much. everything I eat is almost tasteless. That is kind of boring.
It is still difficult to eat, but the tumour hasn't changed much in my mouth the last week. I hope that is a good sign. I think so anyway. It is very difficult to say.

I have this bad thing though, that food get stuck in the upper part of the mouth. and whenever I need to breath in. I breath in that food, and then I cough it out.
If I need to breath while eating, I have to be very careful. Because it easily get down to the lungs.
But if I need to breath out I always spray out the food. Even if I breath out carefully. That is so irritating.
I need to hold my breath when I eat, and I have it difficult to breath through my nose.
And also, food gets stuck in my throat. I cannot swallow it without water.

And today was also a really hot day. I am almost waiting for a day with really bad weather. I want that it to rain really really much some day soon.

Anyway, I haven't really felt that good today, because that lack of proper sleep I got.. And I slept little during the day today. Maybe I should call home care this night, so that they can give me something so I can get one night of proper sleep.

I'm just afraid that it will be pointless. It is usually like that when I am at hospital for example.

Let's say I had one night I slept really bad. I woke up often. I took 1 sleeping pill, and woke up after 1 hour feeling rested. So I took another sleeping pill and woke up after 1.5 hours, then I took something against anxiety and maybe I slept 1 hour..etc etc.
So in the morning when I talk to the doctor I tell him this, and the doctor is so nice and everything and he says that if it's like this tonight again we will give you something stronger.

So, the night comes, and it's the same thing I have it difficult to get to sleep. And I tell the nurse, but the nurse gives me the same sleeping pill I got last night. So I tell her, "But the doctor told me that I could get something stronger". And the response I can get is for example "Yes, but I think it is better to try with this first and see if it works". OK... But why? We already know it doesn't work. Ok then, I am not in control.. Let's say I sleep 3 hours this night, and wake up again and I call for the nurse and I say that I can't sleep. So she doesn't give me the stronger sleeping pill because it is too late, I will just get too tired in the morning, so she gives me the same anxiety pills again, and I sleep a little.... And I still have slept bad that night, even if it wasn't as bad as the night before. But what makes me upset is that, why couldn't I have gotten the other sleeping pill that the doctor recommended. Since the doctor has said that I am allowed to take it, don't I have the right to decide for myself?

Sometimes, of often when I am at the hospital. It feels like I loose my rights to decide for myself. It's always "I think this is good for you" or "We think you should do this". And it so difficult to say no. I can't say no.

Sometimes it's 'We have seen that you cannot handle this so we take over and decide for you'.
That could for example be the food.
When I eat ordinary food with my mouth, it is never a problem. If I eat too little, I don't hear much about it.
But when it comes to the food I get through the feeding tube, it's almost like some kind of dictatorship going on.

Once I needed to go do some ultra sound thing on my heart, and I was having a bag of food dropping in at the same time. So I disconnected it, and thought I could just connect it again when the heart examination was done. But no, no "We think that you should have this with you, you need your nutrition."
So they tried all sorts of ways to get this food pump with me, there was no place to attach it to the bed, because I was escorted there in the bed. So they spent all this time trying to figure out how to get this bag of food with me. And I was starting to get a little irritated.

If I had eaten ordinary food, with my mouth. Would I have been forced to bring that with me too? I eventually said, quite irritatated. Can't I decide myself?
And the nurse seemed a little chocked, but seemed to be a little irritated herself. So eventually they disconnected the foodbag fŕom the feeding tube and I went away to the heart examination. And when I came back I plugged it in again, no more hassle and trouble.

Later more nurses came to me, or if it was the day after. And wanted to have some sort of discussion that began like "We have heard that you are not quite happy" and "It is very important that you get your nutrition". etc etc..

this sentance
"It is very important that you get your nutrition"
is repeated daily, several times per day. Especially if I get food through my feeding tube. In case I forget that for some reason? How old am I now again?

Another thing that happened was that, once, when a group of doctors and nurses was listening to me speak, I asked to get my bag of food early in the morning. Around 7 or 8 or something. Because if they give me the first bag at like 12 like they had done, I will have the last one late at night when I want to sleep.

So the next day around 7 o'clock, this jaunty or spry nurse comes in and tells me that it is time for food. And explains to me "It is very important that you get your nutrition, you can't keep going on and taking your first bag so late..." bla bla bla... In the morning, when I am tired I can get quite pissed off.. however, I did not say anything, I just sighed and said, "yes, yes". And they always ask if I can plug it in myself or not, but with a tone, that makes it sound like "are you really capable of plugging this in yourself", like "are you really sure about that?".. and I say, trying to keep my temper, "yes, yes, I can do it myself".

But when she comes the next morning and says excatly the same thing again, "It is very important that you start early, you need your nutrition do you understand...bla bla bla". I just had to yell at her

"It was I! That told YOU! To bring in my nutrition early! Because it was you that gave it to me too late."

"And, YES! I can plug in the bag myself, how else do you think I have survived alone at home for several weeks with this feeding tube".

They honestly think that I have home care coming home to me just to plug in a bag of food to a this tube.
I can understand if a 90 year old person who is weak can have problems with that for some reason.

But why do they always have to assume first, that I can not do it myself.

Another thing that came into my mind was once after the operation. When they had removed half my cheekbone. One nurse was giving me medicine through the feeding tube. Not asking if I can do it myself, she just does it like it is supposed to be done "by the book". One full shot (60ml) of water to clear the tube, then all the medecine which was dissolved in water, almost three full shots (60ml x 3), and then one full shot to clear it all.

I didn't feel very well, I felt sick, ready to puke and she was pumping in all this water and medecine too fast.
And I had a tracheotomy at that time so it was more difficult to speak, but I was able to speak.

So I just said "Stop, I don't feel very well". That was all I could say. And then I tried raising the bed so I didn't lie straight down. While she was injecting more water, not even helping me get up or anything.

And this thing about lying down straight when injecting something through the feeding tube I've got more stupid nurse stories to tell. You're supposed to sit up when injecting something in the feeding tube.

Anyway, she responded "Feel how? Do you have a headache?", or something like that

I was almost baffled. I didn't know what to respond, I just said "eeerm", and had to breath a little, I needed a break.. And she just kept injecting more water too fast.

And I think I was pointing to my stomach. I was doing something to show her what I meant, and also trying to raise the back on my bed, to no avail. And I said again "Stop, I dont't feel well!"

I don't remember what she said or what she did, but I do know that she was completly incapable of understanding why I didn't feel well.

So anyway what happened was that I just threw up, and it came so quickly I didn't have time to say anything first.

Another nurse came in and said something like "No, you're allowed to throw up!", seriously. First of all, the nurse who injected the medicine to the feeding tube should have waited for me to sit up first.
She could have let me inject it myself, or asked if I wanted to. Since I do that every other day.

And what did she mean by "Not allowed to throw up" ? Did she mean that because I have had an operation in my mouth. Was she really telling me this, or the other nurse? I don't understand how they think really.
I don't remember really what happened next, except I had to change clothes and things like that.

And this thing about, lying down straight + asking me if I am able to inject something in the feeding tube myself.

It has happened that, while one nurse is injecting something in my feeding tube. Another nurse comes in and tells ME, that I am not allowed to lie down while injecting. Yes, I already know that.

But shouldn't the other nurse who was so certain about injecting something into MY body had given me some time to sit up first, maybe she should have known this.

Why is it always my fault when something goes wrong. The nurses never does anything wrong, it is always the patient first that did wrong.

Another funny thing, just after the operation. I probably got pneumonia, plus I had tracheotomy put in. I was coughing alot, and had alot of mucus coming out of my tracheotomy thing.

And there was some kind of filter in it that all the time got filled with mucus. And they used sucking machine to suck up the mucus.

They had to change this filter in my throat/tracheotomy all the time. And so they went out of filters, they had none left, so they just sucked up the mucus in it and put it back.

But it was so heavy to breath through, and I couldn't speak. The only way to communicate was to write on little post-it notes.

Once it was so difficult to breath it almost felt like I was suffocating. And I tried getting attention from a nurse by kicking on the bed.

And I had written "Det känns som jag KVÄVS" on a piece of paper, which means "It feels like I'm suffocating". I wasn't really suffocating, but it was so heavy to breath through this filter that was filled with mucus.

I gave this note to a nurse and she looked at it, and she asked if the last letter was a number 5 ? Really, is my handwriting so bad. She could read "KVÄV5" and still not know what it meant.... Number 5... really? What would it mean if it really was a number 5 then. Or was she joking. I don't know.

Anyway I coughed so hard that this filter just flew out like a cannon ball and hit someone in the head. Then they got a box with new filters.

*sigh* that was alot of whining about hospitals...

Now, I don't have any oxynorm left, no more sleeping pills, and no more temesta. I've got oxascand. Maybe I can sleep on that. I don't know really.

Or wait, yes I do. I have a small case with extra medicine. Good thing I have that.

I notice that my vision on my left eye is worse than on my right.
It has always been like that ofcourse, but I need much stronger glasses now. The strength on my right eye is kind of OK. But on my left eye it has become much worse. I kind of feel scared now also, hope that oxascand works.

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