Enter the Quaniverse

A recount of last week’s operation and encounter with the Australian healthcare system. Warning: Whinging. Graphic. Oversharing.

Have you got someone to take you home?

Before the operation, upon arrival and after you wake up, they ask, sometimes repeatedly: ‘Do you have someone to pick you up?’ It’s part of the procedure. Since no one could tell me when I would be going home though, they accept my imprecise answer without question as I’d simply have to call someone at the time.

But when I’m finally released, a full night and a day and a half after expected, it feels like an afterthought. I sign the discharge forms, receive pills to take away with me, and take the elevator down from the ninth floor to the exit on the fourth. Admissions tells me they’ll simply add extra charges to my credit card. I call my partner to find he is already driving up and will pull up in front of the hospital to let me hop in. When he does, we fumble, he with the locks, me with the door, until I can finally get in. ‘Take me home,’ I say and break down sobbing, full upper body up and down, my hand smashed into my face, in a way I haven’t cried since Dad died.

My fault

Apparently, I can’t stop bleeding. The liquid is dark and red and doesn’t seem to be clearing. One of the nurses asks if I take anything like fish oil. Why, yes I do. I’ve been taking it for some years now. I read that it’s one of the few supplements that is absolutely proven to be good for someone’s health. Extra strength? High dose? No, two 1000 milligram pills in the morning, two at night.

That must be it, they decide, and check with my surgeon as well, who eventually concurs. It’s amazing how it does that, they tell me, thins the blood. I rack my brain to the badly photocopied page of warnings of medicines to stop taking before an operation. It had been the same page I’d received three years in a row and I remember scanning it and not finding anything that applied to me, various pain-killing medicines and other unfamiliar names.

Perhaps, the surgeon, said, his office was making a mistake and sending out an old version of the page. This sends me into a whole narrative of indignation and anger. Are my operation’s complications and an unexpected night in the hospital caused by an administrative error? But when I arrive home, I look at the paper again. I scan the long list of names, and there it is. At the bottom of the page. Fish oil. My fault for having missed it.

Obstruction

Mostly, I told work contacts and acquaintances that I was having a minor operation. This, my partner pointed out, made it sound worse than it was since they had no idea what it was for. But it did feel embarrassing, private and slightly too complicated to explain. A man in his 40s is not supposed to need an operation on his prostate. In fact, the incidence of Trans-Urethal Resectioning of the Prostate (TURP, or turnip as my friend J took to calling it) has dropped as medicines (Xatral! Flomaxtra!) have been effective in reducing the size of the prostate (or at least allow urination) without an operation.

In any case, the operation was not for my prostate, persay, but because of a ‘bladder neck obstruction’, which most likely was a condition I was born with and only has become evident now in my 40s. I could never pee quickly, but as I never peed in groups of people, it was not something I compared. Once, peeing in adjoining cubicles with a best friend, I made a comment about him peeing ‘like a racehorse’ and his reaction was so confused, not only because of the English idiom, that I thought, briefly, that it was I who was unusual (though there’s no opposite idiom: pee like a sparrow?). A boyfriend many years after made a comment to me I found cryptic, but otherwise I’d never given it a thought.

Three years ago, during a routine health check, I was found to have a urinary infection, something that is found only in old men. Further tests resulted in a false diagnosis for Hepatitis C (traumatic, bizarre and a story for another time) and the news that the reason for the infection was that because of my ‘blockage’, a mickey mouse ear had formed off of my bladder, slowly, over many years from not being able to pee at the normal rate. Now, this ear did not completely empty, which made it subject to infections. I was informed, by the specialist who became my surgeon, that he would do a cystoscopy to have a look around.

This, then, was my third operation in three years. The first, the cystoscopy, which I still can’t pronounce or spell without googling, was day surgery to discover that my condition would be monitored once a year, and we would try medications to see if it would help. The next year, the regular scan turned up kidney stones, painful I’ve heard, but they were caught before causing me discomfort. The doctor blasted then with a laser so that they came out of me after as fine silt. This operation was the first to be overnight. In telling people, it gathered extra weight to itself like a magnet and ball bearings. A night in the hospital seemed a different degree than ‘day surgery’. The issue felt more embarrassing and I was almost afraid to find out exactly what it entailed.

Some people need to know exactly what they’re getting in for. Knowledge is comfort. But if it involves pain and discomfort, it might cause unnecessary stress that’s best faced at the time. That’s how I felt, and when I finally convinced myself to do some googling the day before the operation, the potential complications sounded so major, I felt it wasn’t a good idea. I knew I would wake up with a catheter. That it was more major than I was making myself believe. That the odds for the one major problem (that I would lose the ability to ejaculate though not the ability to orgasm; the ejaculate would slide into my next urination instead) varied widely from what the web said (75%) to what my doctor said (25%). I also looked at a nifty diagram of my prostrate, bladder and urinary tract so did get an understanding of what would be involved. Heck, the prostate is only the size of a walnut. Shaving off a little bit. How difficult would that be?

Opinion

Every nurse has an opinion. I’m not sure whether this leads me to the conclusion that you should ask many nurses their opinions to thus compare them, none at all, or simply take opinions with a grain of salt. I’ve told the sweet young student nurse, Filipino-Australian, I think that I really feel I have the need for a urination and a bowel movement. In fact, waking up from the operation, comically, the first thing I say is that I need to pee. The nurse present seems slightly startled by the question and points out that I have a catheter.  This nurse explains that it is a natural part of the operation. Because of the irritation of the catheter and the work that has taken place in this part of my body, it is natural to feel this. She seems slightly enthusiastic that she can impart this knowledge

‘Even if this is so,’ I say. ‘It’s really uncomfortable and if I’m going to get any sleep at all, or manage, I need some medicine like a painkiller.’ She nods her head and goes off to find the head nurse. I look down at my body, which I’ve been perhaps avoiding. The catheter is simple. I’d somehow been in denial about what it would be and how it would look, but it is an unsurprising plastic tube that leads into a complicated connecting part, there are three junctions I think, and these lead up to three bags of clear liquid hanging from a stand, and one bag of dark red liquid hanging down from the side of the bed. I have an IV connected to the back of my left hand, after we’d tried to get it into the right side of my wrist but failed. The hospital gown has some drops of moisture on it. I’ve not tied it up so it lays on me haphazardly with its ties reaching out like the legs of a squashed insect.

I really have to pee.

This doesn’t make sense because I have a catheter but suddenly, I start to pee, and red viscous liquid forces itself out around the catheter. I quickly angle myself so I’m not peeing on myself, notice that I’ve been lying on some sort of pad on my bed, and then aim so what escapes hits the pad, not the bed, I’ve reached around back with my right arm to press the call button, splotches of yellow-red stuff and I’m calling: Hello? Help?

The nurses finally enter. The student nurse stands at the bottom of the bed on the right side. The senior nurse tells me to lie down, and determines there is some sort of blockage. Clotting, it seems. She grabs a round pump at the bottom of the tube and presses it once, quickly. Liquid shoots inside of me, into wherever the catheter ends. It’s painful and uncomfortable. I gasp as I slowly figure out what’s happening. She does it again. And again. Each time I make a louder sound. I am crying out in pain, surrounded by bloody bodily fluids, completely naked with an IV in my left arm, a tube coming out of my cock with two strangers beside me. I’m suddenly glad I have a private room.

‘We’ll have to flush it out manually,’ the nurse explains, detaching various tubes, filling a small receptacle with sterile liquid then drawing that into a sizable plastic syringe. She places the end of it in an opening to the tube next to my penis. Plunging it in I feel a rush of cool liquid, but it is not painful like the demon pump. She withdraws the top part of the syringe and it fills with dark, bloody liquid, some of it in small clumps. ‘Clotting,’ she says. She repeats the procedure four or five times until the liquid is clearer. ‘I think we got it all.’

The urge to piss and shit has gone away. They change my sheets, give me a new hospital gown and a temazepam, which is delicious and I fall into a surprisingly restful sleep until the morning.

The nurses

I have had a large number of nurses in my friendship circles over time. They are, generally, smart, tough and caring, with a propensity to smoke. And perhaps drink. In my encounters with the Australian health system over the years, I know that they are an international bunch, with many using their skills to spend time in Australia, on a short stay or to be with a partner. In Eastern Sydney hospitals, there seems to be a rather noticeable Irish mafia.

I’ve only been to hospitals to visit friends and for day surgery, so I’ve never been exposed to so many nurses at one time. The routine is that they come into your room and introduce themselves, and say that they are responsible for you. Groggy from waking up, I would sometimes miss the name but found this a reassuring routine. Still, with so many of them responsible for me, it was the first time I’d really had the chance to compare them. The score overall: one gem, one nightmare, and most in-between but leaning towards the negative.

What I wasn’t prepared for is that when you’re not the nurse’s responsibility, they have no contact with you. They are responsible for enough patients, and have enough to do. It felt to me a bit like my experience of working retail, or at conferences: you try not to engage with people, even if they want to talk. You could get sucked into their endless needs while meanwhile you have something more important to do. But still: if I was working in a store or restaurant, or hosting a meeting, I’d try to create a positive atmosphere, I’d acknowledge everyone who I come into contact with. I know that if I was overworked and tired, or felt underpaid and unappreciated, this would affect my performance, but I would recognise my duty to care, not just carry out functions.

The next morning, bored and during a period where no one seemed to be checking in on me at all, and where I had pressed the call button a few times to ask to get the drip going, or to note that the bag of red-yellow liquid was almost filled, a nurse who had seemed nice the day before passed by my room a dozen times without looking in or acknowledging my presence. ‘Hey S.,’ I called out for fun, as I thought I’d made some connection asking her about the origin of her name while she tended to me the previous night. She looked startled, and moved on quickly.

So, it seemed to me that while some of the nurses had a nicer manner, it didn’t translate to any particular connection. During the first twenty-four hours, it feels like there is quite a bit of activity and nurses passing in and out of my room. But the second day, the need for this seems to have stopped and I realise that I, room 917, was not only a room number but a problem, the blood-clotting incident. It felt unexpectedly dehumanising to be in such a human condition of pain and suffering but to be treated with such practicality. No one really checks in with a simple, ‘How are you?’ Do they think they know the answer already, or just not want to know? Still, I think of the stories my partner who is a surgeon told me. When I’m one of thousands of patients, with a set of conditions they’d seen many times before, how can I be expected to be treated as an individual?

Meanwhile, a few of the nurses are awful. One insists while in the presence of three other nurses in the room (come to think of it, I don’t know why there were so many around at once) in asking, ‘So, tell me about your Hepatitis A’. I take the question at face value, reply that I contracted it in London in the late 90s and that it passed quickly. But then I ask, ‘Why do you want to know? How is this important?’ I catch what I think is a look of sympathy from one of nurses, while the one who’d asked says that it is important for nurses to know about health issues of their patients. Maybe so, if they actually seem to care about their patients, but I never see her again, and still, in retrospect do not think this issue was of importance, and certainly not to be raised casually, among a roomful of nurses. What the hell?

Another nurse seemed right out of a horror movie. She unnerved me with her fixed stare, a strange accent and the habit of repeating whatever I’d say as she left the room. I was trying to be extra-nice to her since she made me so nervous. I’d thank her for emptying out my liquids, and heard her repeating as she exited, ‘Thanks for that. Thanks for that. Thanks for that.’  The very last nurse before I left jammed the temperature probe into my ear so hard it hurt.

The worst nurse was one of the shift’s head nurses: my nemesis, Nurse Noelene.

The next morning after surgery, I awoke early, at 6am. I believe there was another manual flushing out, and more clots. Numerous temperature and blood pressure takings (after the surgery, my blood pressure had been low, but had steadily risen to a safe place). But the day went on with no information or news. I could tell that the extra bleeding, and the dark colour of the liquid flushing through my catheter wasn’t a good sign. But no information. I asked when I could expect to see Dr P. and was told that he would probably visit during a lunch break from his surgery. I imagined around noon, but then was told it would probably be between 3 and 4pm. I couldn’t get any information at all.

I’d been told before surgery that I may be let out in the late morning, or perhaps afternoon. My partner would be coming by to see if he could pick me up. The day was disappearing. My IV tube had been removed. I had read nearly every article I could download from my New York Times subscription, and discovered that I’d managed to download season 3 of the Danish TV series Borgen without subtitles. I hadn’t arranged visitors because I had expected to be out by now.

It was also a day of misinformation. My operation is usually for older men, so I suppose that’s what the nurses are used to. That’s my guess for why, on the day that I expected to leave, different nurses would say, ‘I’m sure you’ll be out of here in a few days’ or ‘You’ll probably be released next week’ or (and this is on Friday), ‘you’d usually have your catheter out on Monday if you’re lucky’.

My confusion, frustration and boredom were building, peaking in fact, and it was at that time that Nurse Noelene came on shift and felt it her duty to explain that not only could she NOT tell me anything, but that I shouldn’t expect to see the doctor at all, since he might not come at all today, though he might, but she couldn’t say, that was the main thing, that I could NOT know. The agency nurse who told me about Dr P.’s shifts was completely OUT OF LINE, and in all of Nurse Noelene’s years of nursing, no, she would never say anything about when a doctor may or may not come.

‘You mean, the doctor might not come today. Or that you can’t say? And you have no rough estimation whatsoever? And…’ I am losing my temper.

‘CALM DOWN!’ she snaps at me and then disappears.

My partner arrives, sits beside me and I rest my head against his chest. ‘No one can seem to tell me anything,’ I complain. ‘I’m having such a hard time.’

It is then that the red-haired student nurse, Lucia, who is taking my blood pressure (vastly elevated I’m guessing) and adjusting the bags leans over and says, ‘I’m really sorry you’re having such a hard time.’

It makes all the difference. I’m a bit shocked and emotional at being treated like a human being, lovely Lucia, the anti-Noelene. I had chatted with her a bit before, and do so during the rest of my stay. Perhaps she’s not become jaded. She’s excited about being placed on a floor with so many different post-op conditions (‘not boring or repetitive’) and she’s secured a placement for next year already, after her graduation, at another hospital. She was the one nurse who seems to actually care about me, and I am grateful that she was there during my traumatic period.

Smart Start

There’s another reason why I was going into an ugly tailspin. It was financial. After my last bladder scan, my surgeon had said he needed to operate as soon as possible, at the private hospital. He did not discuss the option of waiting for public care. But before the operation, I received a call from the hospital explaining that my insurance covers day surgery only, not an overnight stay. Rather than $1500, it would cost $3500. This normally wouldn’t be an issue for me but my cash flow is a bit tight at the moment, and I found the cost considerable.

When it was dawning on me that I would have to say another night, I had no idea: would two nights instead of one mean $7000 instead of $3500? What would the costs be? With my partner next to me, I finally calmed down, and called downstairs to find out it would be an additional $500. Manageable though I imagine a $500 hotel room would be a nicer experience than this. ‘Strange’, the hospital guy said, ‘that my Smart Start coverage with Australian Unity wouldn’t cover it.’

And then it dawned on me. When I first took out private health insurance in my early 30s, my recommended coverage was called ‘Smart Start’. This, I’m guessing was perfectly suitable coverage for a healthy young man in his early 30s. Although I take responsibility for not reviewing my coverage since, I’d think it would be in the interest of my health insurance company to have tried to upsell me a higher level of coverage. Instead of being caught out paying this substantial bill, which doesn’t even include the cost of the operation ($2300, but not sure how much I’ll get refunded) nor the bill from the anaesthetist (also not known at this time).

Yow! So much money for such an unpleasant experience.

Powerless

I wake up early from my second night in the hospital. I slept remarkably well. Thank heaven for temazepam and a private room. My bag of liquid seems quite full, so I ring the bell. A friendly nurse comes in, and informs me that they can remove the catheter. I haven’t seen her before I ask, and she says she only works one day a week (a shame, she was lovely). Free, free, I’m free of a catheter at last. It’s uncomfortable to remove it, as I expect, but quick. I’m to call them the next time I void.

I’ve learned a new word. In the hospital, you don’t pee or urinate. You ‘void’. Have you ‘voided’? Call me after you ‘void? A shit is a ‘bowel movement’, a more familiar expression.

When I do void, the liquid is dark and bloody and comes out in a strong stream. The operation seems to have been a success. I’m not sure if I need to shit, so wait. I read a bit on my iphone and then go the hallway and wait patiently.

Ah, Lucia, the lovely student nurse is back. I’m confused as I don’t understand how shifts work and she’s back already after being on the shift last night. She must have only gotten a short sleep. But Lucia being back means unfortunately that my nemesis Nurse Noelene is also back. Oh god.

‘You told me to call you after a void,’ I tell Lucia but Noelene marches over.

‘How long ago?’

‘Er… Ten minutes.’

‘Too long, you have to call us as soon as you finish!’

‘Er… Five minutes.’

‘No. Just lie down and call us the next time.’

I retire back to my room. Duly following instructions, the next time I pee, I tell Lucia who does a scan. ‘The gel is a little cold,’ she says before putting it above my groin.

‘I’ve just had a catheter in for two days. I think it was probably more uncomfortable than a little gel.’

She laughs. The scan however indicates that there is 800ml of liquid still in my bladder. Noelene marches in and says that I need to pee again in another ten minutes and then they’ll do another scan.

She does the next one. Hmm. Now it says that there is 1000ml of liquid. This doesn’t make sense. I try to explain that the operation wasn’t to fix my diverticulum and that while I can now pee well, it’s likely that my diverticulum and bladder are still holding liquid.

‘Doesn’t matter. Next time you pee, then call us, we’ll do the test again.’

Over the course of the next eight hours, I do the test over and over. Every time the line about the gel being cold (though I don’t repeat my first joke). Every time the readings are not quite right. I ask, after a while, whether if the aim is to have less liquid in my bladder, then should I be drinking? But they say, yes, to drink not too much, but not too little, perhaps half a bottle every hour, to still flush out my bladder, though I still don’t understand what test I’m trying to pass.

In the late morning, Dr P.  visits. He brings his two daughters with him, who scurry around reception, and ask for papers and stickers. I know that this is not a scheduled visit so am thankful. I can go, he said, eventually, but not until 4pm. In case of any complications, they need to keep me close so they can just ‘pop in a catheter’. I can go for a walk, and get out of the hospital but I’m to return back for regular tests.

I escape for lunch with a friend. I come back, and sit in the corner of my room and read a magazine. I feel much like a prisoner. Suddenly, I feel quite dizzy. I’m not sure whether to tell anyone. It’s not like they seem to ever be able to give an accurate assessment of what’s happening to me. I’m right. When I tell Nurse Noelene, she tells me to lie down, takes my blood pressure and barks at me, ‘I think you’re stressed.’

Stressed? Much more so after being barked at. It makes me furious. The correct answer would be that after major surgery, I would feel weak, and sometimes dizzy and at times somewhat sore, over the next days, and to take it easy but understand it was a regular part of the recovery process.

They are doing one more bladder test, which I have evidently failed again and have to do a second pee. But the phone rings. It is Dr P. and I speak to him. He tells me I can go home. The machine doesn’t work on a diverticulum, he tells me, he’s tried to explain it to them but they don’t quite understand. I’m not sure if it’s any relief to think that if they wouldn’t listen to the surgeon, they certainly weren’t going to listen to me.

An assessment

In my other life, my life out of a hospital bed, I have edited many reports about the Australian health system. Early in my stay in the hospital, a young Chinese-Canadian nurse asked me what I thought about the health system, and I had to answer honestly that I didn’t know. I’d left Canada before I ever needed any significant treatment and had not had any major experiences in Australia. Good, I guess. At least it’s Australia, and not the USA, a health system that is accessible by all, and nationalised.

But when I remembered the reports I’d edited, about an Australian health system that is supposed to be based on the needs of the person at the centre of the model, where the person feels empowered with information and confidence to be able to communicate what they need and have those needs met, I was shocked at the chasm between what is hoped for and what I experienced.

At no time did I feel central to my care, a true subject rather than an object. As a well-educated, articulate and relatively confident individual, I would have imagined that I’d fare well in the health system, that I could use whatever skills, charm and education built up over my years to create some level of positive human interaction and be satisfied with the care I received. That was not the case.

I’m shocked at my level of unhappiness and complaint. It makes me feel somewhat disloyal: to my adopted country, to my friends in the medical profession, to my coping abilities. It was all in all a small operation, only two nights in the hospital with minor complications and little pain. But I found it so traumatic. So many people I know have cancer, or have undergone major operations requiring much bigger procedures and longer stays in the hospital. How are they managing?

The problem, my partner, points out was my expectations, as he could clearly see me spinning out when I couldn’t get any idea of when I might go home, and what I’d been told, ‘overnight surgery’, was proving to be wrong. That and the potential extra costs. And the handful of nurses that I found terrible matched with a general atmosphere of indifference.

But I realise it was also a feeling of being completely powerless, without control or volition, to have enough information to try to manage my expectations of how long I would have to stay in the hospital and when I’d be able to leave. Worse than that was having my own bodily functions controlled, not only the necessary parts of the operation, the IV and catheter, but then the constant surveillance and scolding over my urination schedule on the second day, not allowed to check out and failing the scans. My psyche reacted badly under this set of circumstances.

Did I expect too much? Yes, certainly. But later, my friend Graham will point out that we live in an affluent society where we’re used to being in control and listened to. We get so used to this comfort that when something like this happens, it can really take us by surprise and knock us sideways: we’re just not prepared for systemic, casual impersonal disregard, particularly in a context that’s meant to be all about care and nurturing.

Now, after the surgery, I’m surprised at how weak and out of breath I am. I’m trying to treat myself nicely.  I’m crossing my fingers to avoid any future surgery, but if I do have it, I’ll read any materials sent to me with an eagle eye, and interrogate my doctors before any operations for a better explanation of possibilities and probabilities. And I’ll send a thank you note to Lucia and say a little prayer for the Australian health system, that it can become what it hopes to be, however improbable that seems.