I promised convincing evidence. Here it is. A sampling of what my week in this place was like:
• Several times I had to point out that my IV was empty and needed changing /or was not dripping. They always ignored me like don’t know what I’m talking about. They barely look at me, nod and say “it’s fine” or “someone will come do it when the time is right”. That is, until I’d point out that my blood was running back up into the tubes. Then they’d say “oh no” and rush to change/fix it. Obviously it wasn’t “fine” and no one will come to do it when the time is right”.
• I asked 4 times over the first 2 days for a tv remote. They’d say “sure” and then disappear, never to return or say another word. Finally the answer is that I have to go to admissions and ask for one and pay 50 euro deposit (and you kidding?!) Plus 3euro per day. I point out that I’m in isolation and am not permitted to leave my room. Duh. Still, no one gets it. They either look at me like I asked something ridiculous or else they do that thing where they agree and then disappear forever. They are sooo good at that.
• I am not allowed to eat any raw fruits or vegetables. However, they tell Del that the dried apricots he brought me were fine. (They weren’t.)
• They feed me crappy white bread, butter, jelly, fake cheese (like VacheQuiRit) for 2 meals a day (dietary score=0.0024), and tea when I ask for coffee, or else they forget anything hot at all. I get only one .5 liter of water per day. My only other option is to refill the bottle from the tap in the bathroom (for someone with no immune system!). I get no juice, nothing else.
• When I am finally allowed out of isolation and can go myself to get a tv remote, I have to go through whole shebang of “choosing” which room I’d like: single, double or quad. And I have to agree to the price and conditions and sign a contract saying so! I say to the woman, “but I’ve been here for 4 days already. I’m already in a single room.”
She says, “Yes, but which room would you LIKE?”
I repeated myself several times, but she continued to give me the same answer as if it wasn’t ridiculous. I told her to forget the remote. Then she said I had to pay the 50 euro deposit for the room anyway, which they’ll give back to me. But she said I can pay it when I leave if I like. (Which means of course that they should turn around and give it right back…weirdos!!!)
Del in all his visitation gear.
• This is the best one: a med student enters my room to ask me some questions while I’m still in isolation. Except she has no gown or any of the other paraphernalia on. I say something about my being in isolation and she looks at me blankly. I try another tactic where instead I say, “Oh, that’s great. Am I no longer in isolation?”
She looks at me like I said something stupid. “Ummm, what?”
“I was in isolation. But I see you have no gloves, mask, booties, gown or cap on. I guess that means I am no longer at risk. Nobody told me the good news.”
She holds up a finger. “One moment.” She goes to the room door and opens it, to see a big sign on it warning people not to come in without the coverings. There’s a trash can next to it for people to discard these things when they leave. Somehow, this brilliant girl missed all that. She leaves, comes back dressed, then admits that she’s a student and didn’t bother to read my file. (Excuse my French but) For fucking fuck’s sake! What is wrong with these people?!?!
• On Tuesday and Wednesday, the docs said they couldn’t give me a special shot (later to be known as Neulasta) to raise my WBC because it cost 1500Euros per shot and insurance won’t pay for it until the next time this happens, because I have to have proven that I have a problem keeping my WBC up first. (Sounds like US-style insurance!) Finally on Thursday they give it to me, since my WBC are still going down. That night I start to get shooting pains in my hips and the base of my spine. I feel the necessity to rub my kidneys, but that makes it worse. Nothing helps. Not moving. Not sitting still. Not lying down. By Friday afternoon I have complained about this several times. It has gotten seriously worrying and I go to find the doctor to ask him in person. He tells me “it must just be from lying in the bed for 5 days. It’ll go away.” Now, I get released from the hospital, only to find out that such bone pains are the most common side effect of Neulasta. I suppose it would be too much to ask, for them to know anything about the medicine they gave me, no?
• All week I asked that my oncologist be informed of my situation. They assure me he will be/is, but when I call on Thursday because I have my doubts, I find a very upset Dr. Awesome, who has not been called once and had no idea that I was in the hospital.
(As an aside, he’s upset also that I am not at the Leuven hospital, where they know me and can give me good care and offers to transport me right away. I decline as I will be released in the morning anyway. When I explain how I came to be in this excuse for a hospital, he’s furious at the people I spoke to on the phone on Monday night and I have no doubt they received a proper lashing. Dr. Awesome leaves me with his home phone number, just in case I should need it. Don’t I feel special?!)
So go ahead. Tell me about a worse hospital. We’d all appreciate the warning!