Radiation 60% finished — but the patient is always wrong

That’s the good news — Pak. Fadil has completed 60% of his total prescribed first-packet radiation treatments. The bad news is that the side effects are catching up with him. There may also be complications from his diabetes, but I’m now sure about that.

I do know it was a tough weekend for him and his family, culminating with a futile midnight visit to Cipto hospital to seek inpatient care. There’s nothing more frustrating that being turned away from ER. We’re used to it now, but I saw a young couple with very likely their first child, in her mothers arms, turned away. They were expressionless. They just couldn’t imagine what they were going to do now. They had come from who-knows-how-far to the “free” government hospital. Totally unaware that this is a good hospital and easy to get into.  The shiny airport-grade entrance with  people sleeping on the sidewalk under a small forest of satellite dishes might have given them a clue.

But that’s how Fahri pitched up at RS Fatmawati (Fatmawati hospital),  aged a couple days, and the reason Mona, swore she’d never go back. Well she has. As recently as this afternoon. I was there too, but not for long. I couldn’t take the heat the people — and being turned down by the Polyclinic doctor who described Mona as naughty for not attending to her father’s diabetes, one of several interlocking treatment cycles that also includes radiation therapy, chemotherapy, and a heart condition.

Mona’s not naughty. She is busy. Just this morning she had a meeting with prosecutors. They were tied up and told her to come back at two. But she had to cancel  because Pak Fadil needs another white blood cell transfusion and that requires her to first negotiate the price (through a process known as ACC), then go across town to a Buddhist foundation to get a signature for the entire amount of the deal since she never carries with her any more money that she’ll need for her taxi home.

Anyway, I bailed. I walked out of Poly, down the stairs, through this claustrophobic maze of buildings, across an old Dutch footbridge over the river, through Cikini market — one long roof, apparently at extension of the footbridge — to the Cikini train station where I caught a Bajaj.

It was just so frustrating to have the doctors blame us. Blame yourself, blame the government but don’t blame the patient, for crying out loud. Anyway, we’ve screwed up. Jepoardized the radiation schedule — now paused — because Pak Fadil just isn’t doing that well.

He’s lost weight. No surprisingly, given that his mouth is one big blood sore that keeps getting infected. He’s still pretty strong and pretty much trying to do the right thing.

But instead of a hospital bed what you get is this merciless list of boxes to check off — see the cancer docs, see the blood docs, go back to Poly, go to the pharmacies , all of which require a lot of time and often money. The second white blood cell injection (don’t know what it’s called will be nearly USD 200). And the money requires a lot of paperwork, too. But it’s always your fault, never theirs.

The doctor was nice, a good communicator and concerned about the patient. It’s pretty hard to fault her. All I can say is there’s a built-in failure rate and a lot of double talk.

There are 32 patients ahead of you. Sure you can have a bed. Well, that’s nonsense. People wouldn’t bat an eye at a wait like that. After all, queuing by proxy is the rule, not the exception, around here. People happily sleep on the sidewalk for as many weeks as it takes for family members to get better. Last night at ER there were 23 patients waiting for beds. Whatever. It’s just a way of saying.

And don’t believe them when they tell you the hospital down the way is almost empty! If you’re paying, they don’t want you either.

They’ll put you under observation in front of a security barrier where the ambulances unload almost as long as you like. It’s freezing cold despite the blazing lights overhead. But as long as you remain conscious without profuse bleeding or intense pain, you’re eventually going to have to turn around and limp on back the way you came.

All of which — for some reason — we weren’t expecting. Mona has been told (“by my people at the hospital”) that the back door to a bed at Cipto hospital was ER. I had my doubts and expressed them last night before our ill-fated venture, the second time in as many days I have done the crazy bule act before hapless (but perhaps not hopeless) young docs.

But today was a slam dunk. With the bapak unable to eat, drink, sleep, take medicine or continue his treatment, we all thought he’d go inpatient. That was what the cancer docs — Dr. Fauzi in the oncology unit, who the Bapak likes a lot — reportedly told her: take him to Polyklinik and we’ll coordinate it and that’s that. Get him stabilized so he can continue treatments.

Nonsense. It’s like dealing with cops. They simply lie to you.  Here’s your free hospital bed they say motioning to decoy on the other side of a trap door which is about to open under your feet. I’ve seen it a million times at RS Cipto and RS Fatmawati. Here’s the example that happened last night: doctors somewhere in the bowels of Cipto told her that, since the patient is being seen at Cipto (which he is) , then in the event of a real emergency, the thing to do would be to go to the ER at RS Cipto. It made so much sense. It was so not true, proven by the fiendish laugh of the immature resident at ER.  Trust him — there’s no connection.

As for the built-in failure rate, they really don’t expect you to manage with all the things on your “To Do” list. It’s not humanly possible to wait in that many lines before the docs go home. And it’s not humanly possible to come to the hospital every day. For one, it will make your patient sicker. Two, it will undercut the ability of the family to take care of the patient. Three, it’s enormously expensive and always a full-day affair no matter where you live, because of the nature of Jakarta traffic. And the docs know that. They know that a large percentage of the people at RS Cipto are poor.

So they flunk you out in ways that wouldn’t happen at other hospitals. Not intentionally. It just happens. More than at other hospitals — this is my theory — at hospitals like these docs blame the patient because he or she — for want of information, literacy, or something else did forget to do something.