A Canticle for Patients


An angel distressed…

Tonight Fran had to change our bed. No big deal, in the scheme of Life, the Universe, and Everything, she said, but it’s what got me thinking. That’s what I do, these days, by the way. I think. Fran struggles with underlays and fitted sheets with vomit stains on them, and I get to… think.

Fran works too long every day, and too damned hard to be dealing with my vomit stains on the sheets, on top of everything else she’s in charge of and does flawlessly. But that’s one of the drawbacks of living with a husband like me who has enough medical hardware in his back to buy a a small house. (Personally, I’d prefer the house, but the catch is getting the gear out of me without annoying the neighbours with the blood and my pathetic screams that’s the kicker). I almost literally can’t lift a finger to help her. She’s used to that. I hate it.

Hell, it’s all I could do to get out of bed this morning, remembering to roll first, then push so the fusion doesn’t get twisted, while simultaneously trying (unsuccessfully) to stop the mostly liquified contents of my stomach from spurting painfully out through my right nostril. I didn’t do either task very well, as you might guess. Not that it would be anything I’d like to become good at, if you follow me.

It was interesting, I must admit, in a gruesome sort of way… Blowing one’s nose and filling a tissue with particles of minced steak (and what tasted – and felt – like diced capsicum) from last night’s beef pie, together with a fine spray of bright orange stomach acid, is as revolting as it sounds (and smells (and tastes (and feels))).

Embarrassing for me as well, although there’s no bodily function Fran and I can’t talk about. There’s zero dignity to be had while participating, however inexpertly, in more than a dozen fairly significant operations over nearly 25 years. And Fran was right at my bedside every time as I pissed into frosted plastic catheters and shat on the occasional sheet. I felt moved enough today to apologise for the violent orange colour of this morning’s unexpected wakeup event though. Herbert Adams’ special sauce, I believe. That, and Gaviscon.

And while it’s “only” vomit, it’s the final straw that’s broken this little camel’s back.

Allow me to explain why.

Oh….I’m a hypochondriac, and I’m OK!

My constant gastric reflux is just one of many issues we’re dealing with at the moment. See, I decided (or “we” decided) to not continue seeing our old GP.

Although we were happy with him for nearly 27 years, there comes a time when you decide you don’t want to be shouted at by your kindly doctor, because you took less pain medication than he usually prescribed. Confused? Not as much as I was!

There was also a major issue with a new practice manager (let’s just call her “Sally”, to protect the innocent, since that’s her name) who made life so bad for everyone except herself, that three of the most professional and compassionate receptionist staff I’ve ever known resigned en masse in protest at the new übermistress. Judging by the ample patient parking space available there these days – where usually you had to book years in advance to find a parking spot – it seems that slightly more than half their patients suddenly found other GP surgeries much more pleasant and closer and pleasant and happier and more pleasant. You get the picture…

Still, Sally’s job is safe, just as long as she keeps fucking the senior GP. Sigh. Such is life in the fascinating world of medicine… Cue titles and soundtrack… “The Young and the Restless”…

So. Along with the ever-increasing back pain, I’m finding I’m having to deal with annoying little distractions, which, on their own, would be just annoying. But luckily, some are really frustrating, like

  • the variably deafening bilateral tinnitus (tinnitus is the gift of always having a tree full of cicadas wherever you go, right inside your head!)
  • increasing natural high-frequency deafness (yeah, you’d think I’d cop a break there, but the tinnitus works at the lowest level of hearing transmission, while the deafness is happening at the highest levels);
  • bilateral digital parasthesia (numb fingers, creeping slowly down from the fingertips, which are all numb now, creeping, creeping, creeping towards my hand and wrist);
  • bursitis that would fell a camel;
  • full-on depression (black dog, pit of despair, and all the trimmings);
  • binocular diplopia (each eye sees two images, and the four of them don’t line up – just like watching a 3D film without the Buddy Holly glasses, only it’s real-life 4D);
  • presyncope and vertigo as a bonus side-effect of the anti-depressants;
  • peripheral oedema (fat feet) as a bonus side-effect of the blood pressure medications;
  • inability to sleep on my left side (as it crushes the intrathecal catheter, stopping spinal delivery, and I wake up crying in pain like a little girl with a spinter in her brony);
  • inability to sleep on my right side (I carelessly smashed the muscle pad over that hip in the accident, so it’s excruciatingly like lying on broken glass being warmed by a fire); and
  • the inability to sleep on my back (due to the neural stimulator being placed smack in the middle of my gluteus maximus, like a brick in the pocket of a pair of tight jeans).

So, since I can’t sleep on my front either (it’s like watching a giant beached white wale, truly), my nights aren’t so crash hot.

It’s not the dark. It’s everything else.

Wears the doctor? Yes, doesn’t it.

Unfortunately, sometimes doctors make mistakes. Actually, with me, doctors make just two mistakes – they think I’m as stupid as someone who believes football players make excellent role-models, and they assume that my CYP450 enzyme system is exactly the same as everyone else’s. So the poor old things start off with two strikes, which is unfair, but I try to tell them!

My pain specialist, let’s call her “Suzy”, made two small errors in the programming of my intrathecal pump when she refilled it last Thursday (was it only last Thursday? 4 days? Feels like a month…).

Now, since she can’t be expected to remember everything about every patient (as it was explained to me by her practice manager), and since she was “far, far, far too busy to speak to a patient on the telephone, and since our next appointment for a refill is in two weeks, she’ll fix the problem in two weeks’ time, OK!” (There are never question marks associated with any specialist’s use of the term “OK”. As in, “How’s that feel, OK! Great, see you when the dogs fly north. Next patient!”).

“No”, I was informed, “Suzy doesn’t prescribe dangerous opioids over the telephone”. (Actually, it’s “opiates”, not “opioids”, but who gives a rat’s arse what they’re called. She just doesn’t.)

“Well, tell you what, if it’s as bad as you’re making out, take two panadol – but only two every four to six hours – until the next appointment. Bye-bye for now!” -click-

So that’s how highly-trained Pain Management Specialists manage my special pain. Another story for another day. Bottom line, pump fucked, fucker of pump not interested able to fix fuckup for another ten days. Or so. No breakthrough pain management plan, since it shouldn’t be needed, as the patient has a reliable intrathecal pump, silly!

O yes, it’s the same argument as the holy bible uses; we thinkers call this circular reasoning.

  1. The patient’s pain-managment pump isn’t managing his pain.
  2. However, the patient has a reliable pain-management pump.
  3. Therefore there’s no need to worry, since he can’t be feeling any pain, as he has a pain-management pump.
  4. Take two aspirin and if the pain’s still there in the morning, immediately call someone who cares.

Whew. I was getting worried there. I could’ve been comfortable for two weeks! Lucky me!

Cue Indiana Jones music.

Now, with a new, enthusiastic, if slightly bombastic, GP, you’d think we’d be on top of these issues like white on rice. Well, yes and no.

In between agreeing with his approach in every respect, I keep having to convince him that I’m not selling Digesic or fentanyl patches at the Farmers’ Market every month, and that although I used to be a biker, I haven’t ridden in over 22 years, so the new Queensland bikie laws concerning drugs doesn’t apply to me. Particularly since we’re in Victoria!

I ran to this GP (let’s call this one “Bruce”), because he had handled the slow, excruciating death of my good friend and neighbour, Rob, in a dignified and helpful way. And I figured if he could be as positive and helpful in Rob’s case, he’d be all right by me.

It turns out I accidentally ran to the right guy. He wanted he and I to have a contract, a bond if you will, that we would share the responsibility of getting my complicated applecart back on it’s wheels. I agreed wholeheartedly. This was 21st century medicine, in action!

Cue Monty Python’s “Liberty Bell” music…

So he dumped me on handed me over to to the practice nursing manager, who asked me lots of irrelevant questions (when did I have my last bowel movement? Seventeen days ago), weighed, sampled, and finally (after she saw that the mess of screws and plates and wires and tubes that I described to her were actually in the x-ray films that really had my name on them) smiled at me, scanned all my prescriptions so they’d be permanently on file, asked if I had any other medical issues to speak of, and when I got out my notebook, we got interrupted by a phonecall, then a patient who needed to be sedated, then another phonecall, then it was the next patient’s turn (this is another shipshape and watertight operation, although the staff are permitted to laugh up to 4 times per 8-hour shift), and… well… somehow, my list of all the tiny little things that are slowly curdling my brainstem stayed right there in my notebook – and in my head.

So now, Dr Bruce thinks I have nothing at all wrong with me except a bit of a pain issue with the fusion. Thus, when I sat in front of him this morning, catching my breath from walking 26 paces from the waiting room to his office with my walking stick, he was quite upset that none of this extraneous information was on his file. Neither were my prescriptions, by the way, so that was an hour and 5 minutes wasted by Mandy. (This is the same Mandy who suddenly found other employment last Monday, and who somehow forgot to do a whole bunch of stuff, as you’ll see in the next paragraph. But I digress again…)

You’re a junkie! I’m a what???

When I asked for fentanyl patches, because I couldn’t get in to see Suzy the Pain Specialist to get them from her, I was subjected to much more serious grilling (again, raising points such as that the Pain Management Specialist should have taken care of a backup plan if the pump configuration was wrong, which I agreed with).

“This is not my responsibility, if you remember our agreement”, said Dr Bruce, “which frankly I’m concerned about, because you still haven’t done anything we agreed to. You haven’t provided your prescriptions to us, as I requested on… let’s see… October 27th. That’s… that’s nearly six weeks ago! And instead of going to Mandy’s scheduled appointments for dietician, psychologist, blood samples, and water physiotherapy, you’re turning up here out of the blue asking me for opiates? This is not what I thought we agreed to do together…”

Sigh. I’m so ronery…

There is a point in every conversation where you either interject and explain who was really responsible for follow through, the paid professional employee who told you they would do everything and notify you when it was ready, or the suffering patient, or else you might as well just pack up and go home, which is rude. I took door ‘A’.

Now, it could be argued that if doctors had fewer patients, they would have the time to stay on top of the patients’ histories. In fact, that’s exactly what I’m arguing. Doctors should be responsible for understanding their patient’s context, their history, where they are in the holistic plan, why they can’t attend some things because of someone screwing up their pump programming, and so on. In fact, it’s not an argument. It’s the truth. That’s what doctors should be doing. But they aren’t. Why?

There are a few reasons. But it all boils down to this : GPs are at the bottom of the medical hierarchy. Somewhere between trained macaques and simian idiots, they’re seen as generalists who never get smart enough about one aspect of medicine. (Horse’s mouth, trust me!). Plus, in medical school, it’s common knowledge that as outback and rural populations age and decrease, GPs can be required by the government to spend years practicing in the back of beyond, before coming back to the lucrative metropolitan cash cow. So those who are in it only for the money tend to specialise in areas where their lack of surgical skills won’t show them up – in lucrative consulting jobs, flogging erectile dysfunction pills and handing out the medical industry’s equivalent of beads and mirrors, gaining their Amex Black card soon after they realise they need those erectile dysfunction pills themselves.

Or, if they have no bedside or people skills, and they hate all of humanity but are fascinated by wet, squelchy things, they’ll become brilliant surgeons.

What about the middle of the road?

There are no alternatives. Well, they could become vets, and some do. But they generally don’t do so well with dogs and cats and other empathetic animals, so they come back to the fold, where their godlike powers and quirky bow ties endear them to struggling roofers and lawn mowers and ex-bikers. Hey, it’s a living.

So fewer and fewer medical school graduates want to have anything to do with general practice. It’s too risky, assuming they genuinely want to help people, since if that’s the case they’ll probably stay where they’re sent, and become the beloved local doctor, about whom many quite nasty jokes are made at surgical conferences and pain management get-togethers, but who generally tend to have a much lower overall suicide rate than the joke-tellers. Swings and roundabouts, as my beloved retired pain management specialist used to say.

So while people who can’t be trusted with a hot cup of coffee are breeding like maggots and simultaneously increasing the population while decreasing the average IQ, fewer and fewer GPs are available to cater to their undeniably hypochondriacal tendencies, and cultural mood-swings like fat-conscious people who can’t fit on a weighbridge clog the arteries of GP consulting rooms everywhere, no GP is going to be able to stay on top of patient histories.

Especially patients who, like me, have extremely unusual and interesting interactions with powerful painkillers (i.e. they don’t work, but nobody wants to ask why, except me – everyone else just increases the dose). I’m not saying I should get special treatment at anybody else’s expense!

But I absolutely fail to see why Shazza and Bazza and their 13 biblically-named spawn who take exactly zero interest in why their kids are fatter than pigs and teetering on the brink of adult onset diabetes, while I spend thousands of hours trying to understand how my nerves work, how nociception is effected by the brain and spinal cord neurons, particularly the periaqueductal gray matter, the dorsal horn of the spinal cord, and the limbic system, and how pain transmission is modified by g-protein coupled receptors, high-voltage gated calcium channels, and GABA-a excitatory channels, and why it doesn’t work that way in my body, and why nobody listens to me when I repeatedly tell them that I get none of the benefits of painkillers, but most of the side-effects! (Hint : It’s to do with the link between childhood rheumatic fever and underexpression of CYP2D6 in the cytochrome P450 allelle, I think. But who’s going to authorise a gene test?).

I don’t expect Dr Bruce or Dr Suzy to listen to me, after all, I’m just a patient. But I am disappointed when they don’t. Quite irresponsible of me, I know. But I’m nothing if not a rebel.

Communication is for pussies. Isn’t it?

My brand-new, caring, friendly local pharmacist, who we’ll call “Kristin”, was concerned enough about my consumption of non-opioid painkillers that she raised that issue with Dr. Confucius, my previous GP. Which was, all things considered, the legally correct thing for her to do.

Sadly, while this led to the irreversible demise of my relationship with Mr Dally/ Dr. Confucius, it kinda forced me into the reluctant arms of Dr. Bruce. So that’s a good outcome from a bad decision. Why bad? Well, if Ms Pharmacist had actually been interested enough to discover why the need for an increase in Mr Patient’s oral medication, instead of assuming I was gonna bomb Canberra, she might have been able to discuss alternatives. Sadly, this was a simple case of a flag being raised, which led to a significant loss of professionalism, which led to a fairly inevitable outcome – and the patient loses. BZZZZT. Game over.

It’s not you, it’s me!

I find it really interesting that, in all of this, it was automatically assumed that I am the “bad guy” because my life involves endless pain, therefore endless opioid medications, therefore I am an opioid abuser, QED. Everyone wanted an easy answer, a palatable reason, a clear and obvious target, and it seems I am Spartacus!

Well, forgetting the onstage shenanigans for one paragraph… In over thirty years of much and more pain, not one medical practitioner has taken seriously the possibility, however remote, that my opioid metabolism – which is governed by one single testable genetic marker -has never been tested. Period. Despite quite literally dozens of suggestions, requests, and even squeaky, feeble “demands”.

Who was it that said “Speak the truth, even if your voice shakes!”? Well, my voice shook, alright. Whether correctly or not, I asked the question, and was denied the answer.

I’ve now spent, by my own admittedly dodgy reckoning, around ten thousand hours, close to $200,000, and ten gigabytes of teaching myself how my busted arsehole of a pain system works. I’ve tried to kill myself once, put Fran, my wingless angel, through the wringer, and been butchered, bullied, and ignored.

How did we get here? And how do I fix it? And why is it me who must fix it?

Let’s be perfectly clear. There are many, many surgeons who I wouldn’t trust to find their own arsehole with both hands and a torch. There are many, many more who are gifted beyond words. Unfortunately, like most chronic pain patients, I’ve been operated on by both types. Luckily, the Old Boys’ Club rules means I’ve been lucky enough to forge friendships with the gifted type, who are often more than willing to repair the physical depradations of the butchers. That’s one of the advantages of the Old Boys Club. Well, that, plus no-one talks about the Old Boys Club. It’s just not done, old bean. The compassionate surgeons are bullied into honorary Directorships, the incompetent surgeons are shuffled into private hospitals in view of the mountains, and the rest try to make do.

It still begs the question, though. Why do I have to do someone else’s job, in order to retain some semblance of a normal life?

If this was plumbing, it’s the equivalent of having to learn about hot water systems because the “professionals” we contracted didn’t know there was anything else but cold water – and meanwhile we’re being raked over the coals for suggesting that warm water was a possibility! How dare we mere mortals infringe on the Voodoo of the Mystical Mumblers of Hot Showers! And then the horrid fuckers demand immediate payment, after soaking your house. With cold water.

Enough whining. Here’s the formula:

But On Friday, I’m sitting down with my new GP and ensuring we’re on the right page. I’m not an opiate abuser, any more than he’s an oxygen abuser. He will need to talk with my new pharmacist, to ensure that the scripts are filled promptly and without delay. Finally, both of those will need to speak directly with my pain management specialist, so that they all know the future direction of the reduction of my chronic pain, together with backup plans for when my metabolism or human nature gets things wrong.

That way, I might get my life back after six years of incompetence and ignorance on their part, and I might not have to name names.

That seems reasonable, doesn’t it? Or am I being too hopeful?

I’ll keep this blog updated, one way or the other.

Thanks for putting up with my terrible prose.

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