Episode 2: Justin Case Comes home…

From the moment I woke in the intensive care unit, I was in daily pain of some sort. My nurse would come to my bedside and wake me to ask about my pain level out of 10; The scale one being no pain and ten being insufferable. 

Being a math geek at heart, I quickly applied this to a percentage scale. 5% being an irritating tickle, right through to 100%, that being a “get me into surgery now” pain. This percentage scale annoyed my nurse to no end. She seemed to have a problem equating 50% with 5 out of 10. As she kept waking me to check my pain levels, annoying her thrilled me! As anyone who has awoken me unnecessarily from a deep sleep will gladly attest, I hate being woken for stupid questions. These include:

• Would you like breakfast?
• Have you taken your sleeping pills?
• Are you in any pain?
• Are you still breathing?
• Can you please stop snoring?
• Can you please turnover, your penis is poking me in the back?
  (Sorry Pete, still embarrassed).

Being awoken by such stupid questions is liable to result in me releasing the Kraken from deep inside my dark soul. Usually, stupid questions will end up with me suggesting that the enquirer partakes in some sex and travel. I loved asking my original nurse, “have you considered sex and travel?” for three reasons.

First, “Fuck off” is not a very nice or smart thing to say to a 21-year-old trainee nurse with more tattoos and body piercings than an entire motorcycle gang and armed with needles and enema packs.

Second, she took days to work out “have you considered sex and travel” actually meant FUCK OFF.

Third, I was in pain when I was awake, so her waking me was just irritating. That alone gave me reason to torment her. Tormenting the irritating is a very natural thing for me to do. Actually, not just natural, I took to this task with gusto. So when I replied that my pain level was 62.568%, she requested a ward transfer.

 They eventually assigned me a new young Scottish nurse. She got my math and rarely woke me, once even leaving me to sleep when a fire alarm went off; fortunately for me, it had gone off accidentally. She promised me that she would have come and got me the moment she smelt smoke. But she said it with a glimmer of a smile in her eye, a smile that made me doubt her just enough to not mention sex and travel to her. Hospital is mostly uncomfortable, but full of skilled nurses, doctors and experts in many fields. But experts are the worst. As soon as an expert appears, you can guarantee that things will get more uncomfortable. 

Experts poke and prod you, undo dressings and peel off plasters around wound sites. Then just when you are as naked as the day you were born, 17 teenage student nurses will appear for a tour of your wound site, wherever it is. You can almost guarantee that they will appear when the expert is holding your flaccid, shrunken penis and waving it around just so that he can get a better look at the wonderful sewing job his surgeon did with your wound. When this happened to me the first time, I was torn between the angst at my nakedness and mortification that, in the presence of stunning junior nurses, my penis remained obstinately flaccid. This lack of penile interest was only eased slightly by the fact that another man was holding it. The second time it happened, I protested that junior nurses should not be on the ward during rounds. 

My Scottish nurse told me they weren’t junior nurses but were in fact beautician students. They were here to practise Brazilians on unconscious patients being prepared for surgery. She said they also did the hair and make-up for nurses on double shifts and late for dates. I’m still not sure if she was joking, but the next day she had on some very garish makeup and a dodgy-looking orange perm…

Hospital beds have several things in common with politicians;

Lying is their primary job.

They are extremely expensive.

They can change their position at a flick of a button.

Despite their primary role being to make your life more comfortable, the longer you are around them the more uncomfortable they make you feel.

Hospital beds and all the ancillary stuff and staff are almost as costly per day as a politician.

 So has soon as I could stand up, they evicted me from my expensive hospital bed and sent me home with a bag full of drugs. I still had a wound drainage bag strapped to my lower left thigh, which was draining fluid from my wound site. The wound bag was such an inconvenience that it also would become personified and named Bagatha. Over the next 10 days, Bagatha made many unscheduled appearances at several very inopportune times. It looked very much like a colostomy bag, and the juices that weep from an operation site look remarkably like golden-brown urine. More about Bagatha shortly.

It’s funny how the hospital desperately wants you out of there, but they won’t simply let you walk out. They insist that for your safety, someone must push you in a wheelchair. For a split second I considered asking, “If I’m so badly off that you won’t let me walk, why are you sending me home?” But that was not a question I asked. I really desperately wanted to go home. I would have gone home while I was comatose in the Intensive Care Unit if I could have. As soon as the wheelchair orderly got me to the curbside, he stood me up and swiped the wheelchair from under me. Then, from over a retreating shoulder, he loudly advised me not to let anyone steal my bag of painkillers.

I stood there swaying and desperately in need of a couple of extra arms. I had hold of a bag of painkillers and also a bag containing all the clothes I had worn over the previous two weeks. You do not appreciate how many pairs of shorts and underwear you go through as you master the art of peeing into a urine bottle. A gaping hole in my upper thigh severely hampered my ability to urinate accurately. Then, just when I mastered peeing into the urine bottle, the very next day they had me out of the bed and attempting to go to the actual toilet. 

The trouble is my mind was still working from a healthy perspective. It did not understand how long it was going to take me to get from my bed to the toilet while wearing the various I-V lines, Bagatha, bottles of fluid hanging from my vast and unwieldy walking frame. Whatever time your mind decides that you will need is at the very best five seconds short of the time you actually need. As you get older, you will realise that while your bladder is blind it has an excellent sense of smell. This means that when it can smell a toilet, it will start releasing its contents. You will inevitably find yourself six feet away from the toilet spraying copious amounts of urine all over the bathroom. 

Women please don’t use that “why don’t you sit down” argument. By the time we can sit down, that ship has sailed down a river of urine. No wonder all the cleaners cheered and formed a guard of honor with a tunnel of mops and brooms when I left the hospital. My anal explosion in ICU had become legendary and I had acquired many titles. My favourite two were “The Shittyclipse” and “The PoohPocalypse”.

Anyway, there I was outside the hospital, curbside swaying, holding the smelly clothes that I hadn’t thrown away, a bag of drugs and enough X-rays to run a three-hour film night. I was balancing on a walking stick that seemed to do its best to trip me over. I was also grimly clamping my thighs together to try to keep secure a now half-full Bagatha. They had inadequately surgically taped Bagatha to my now sweating left inner thigh. The tape was losing adhesion because my thigh had been shaved smoother than Lance Armstrong’s for the operation.  Bagatha with maybe a pint of fluid, thanks to gravity, was now peeking out the bottom of my shorts. 

What was most dangerous to my health though was another half-full bag  scratch that; the sack of drugs I had collected from the pharmacy as I left the hospital. I suddenly realised that I was standing just outside the pharmacy that dispensed the methadone treatments for half of Brisbane’s junkies; many of whom had just heard my wheelchair jockey shout the magic words “Pain-Killers” and “Stealing”.

I am a big fan of irony and appreciated the wonderful irony that my painkillers could likely cause me a lot of pain and maybe even kill me and, extra ironically, without one pain killer passing my own lips. I now know how a man who is dying of thirst in a desert feels when he finally finds shelter. Only to realise that the shade he has just found is just a monstrous flock of vultures. Please try to imagine a flock of vultures licking their lips. Yes, I know vultures have beaks, but try visualising it anyway. If you really can’t, I promise you it is as scary as sky-diving and hang gliding with no chance of thrills unless you wash down the painkillers with a bottle of whisky. 

I don’t know why the buyer for the hospital pharmacy chose see-through plastic bags to put the drugs in. Clearly, that person was from the shallow end of the brain’s gene pool. The clear bags meant my methadone vultures had already spotted that I was carrying oxycodone, amitriptyline, Panadeine Forte and, just for the mellow days, some ibuprofen. I had opiates that had a street value of over $1000. Medically speaking, enough opiates to kill me 10 times over; which, coincidently, was how many times the first vulture would kill me for my Painkillers. 

Continuing the ironic theme in the background, I could hear the hospital radio station playing “The lion sleeps tonight”. To me, the chorus seemed to taunt me and instead of “A-weema-way, a-weema-way, a-weema-way” I heard “Ah runaway, Ah runaway, Ah runaway”. I had several toothless drug addicts dribbling and smiling at me like a pack of hyenas looking at newborn, three-legged Siamese-twin antelope. Just as I was about to pop open a pill bottle and throw the contents at the vultures, my beautiful wife pulled up curbside. At 1pm on June 11, 1994 I remember turning around at the altar and seeing my wife walking down the aisle. She looked remarkably beautiful, with the sun shining through the church windows illuminating her stunning blue eyes as she smiled at me radiantly. Not since our wedding day had I been so pleased to see Linda. 

On our wedding day, a few tears of joy trickled down my cheek. But on this day, a tear of relief ran down my cheek and some other fluid that wasn’t out of Bagatha dribbled down my left leg. It took a remarkably short time to get me and the hospital detritus into the car. There was pain, but minimal compared to that I may have been experiencing at the hands of the vultures, if not for Linda.

When I got home, many things had changed. I don’t think at first that I noticed the change in the atmosphere. I didn’t really realise what I had put my family through. The roller coaster rides my cancer had taken them on. Just waiting for the op to happen was crazy enough. The operation finally gets scheduled after loads of scary tests; then the day of the operation itself. The good news was that the operation was a success, but the bad news was that I wouldn’t wake up quickly. The hours of waiting for me to come around in the recovery ward. 

People who had arrived in the recovery ward hours after me were already back on their ward. Eventually, I came around, so good news. Then great news – just 24 hours after the op, I was up and walking around. The phone call at 3pm on Saturday, “Mrs. Nicholson, good news. He is doing so well that if it wasn’t Sunday tomorrow, we would send him home”. Then the ugly, bad news phone call just 12 hours later at 3am, “Mrs. Nicholson, bad news. On midnight rounds we found your husband unresponsive and not breathing. We have resuscitated him and he is in a medically induced coma in intensive care. You better bring your sons in to see their father”. 

Four days of me not being aware of the horror my family was going through. While I deep sleep, they walk around not knowing if I will wake and, if so, what new version of me will wake. I wasn’t aware of what I had put my family through. I know if I had to stand around and watch and wait while any one of them went through what I went through, then I would have been beside myself with anxiety. Now I realise what I put them through. I am devastated at how much I hurt them and more devastated about not realising that until well after I got home.

My whole life had changed so quickly. Just a few weeks previously, I had left home, expecting a week in the hospital. My prognosis before going in was for a tricky operation, a couple of weeks of recovery, then radiation and chemotherapy over the subsequent 12 weeks, and back at work before Christmas. Now, three weeks later, everything had changed, and I really didn’t want to know how much it had changed. Ignorance is bliss is a running theme throughout my life. For a start, I had been dead for a while. A little melodramatic, but it was true. And “a while” was as good a period as I could get; even from the experts. No one would say how long I’d been gone. No one would tell me what to expect. 

Mentally, I felt pretty good, but physically I felt poorly. The four days in an induced coma had definitely taken a toll. There I was just a couple weeks later. I was awake, compos mentis, but my feet were still asleep, and standing up made me dizzy. No one except me realised my feet weren’t ever going to be properly waking up again, and I didn’t want to stomp numbly on anyone’s hope. So I stomped numbly on my own. Even before I got out of the hospital, I knew that neurologically there was something very wrong and it would not get any better than it was right there and then. I knew it was going to get worse, and it has. 

Every day starts when I awake with my feet feeling like I have done 10 hours of standing in a retail store. I feel like I am constantly wearing very tight ski boots. I am at home and desperate to take off my work shoes. But here is the rub. The tight shoes never come off and my feet ache constantly. Getting up is hard and five years on it has gotten worse in slow degrees. They diagnosed me with peripheral neuropathy some months after I got out of the hospital, and there was a hard walk down the medical road ahead.

Peripheral neuropathy is best described for the uninitiated like this. Imagine awakening to a clock radio alarm. It is playing an annoying song, maybe the Macarena. You wake up to the chorus playing… Heeey,… Macarena! Aaay!

It’s playing just loud enough to wake you up. You roll over and try to turn the alarm off, but it keeps playing in your head.Heeey,… Macarena! Aaay!  Not loud enough to truly annoy you, just one of those irritating ear worms, so you just get up and start your day. At the end of the song, it repeats. Then it repeats again. After 10 minutes, it’s still playing but not any louder than any background noise. After an hour, you are little vexed and realise what tinnitus must be like. Heeey… Macarena! Aaay! But quickly you put that aside as you have a song that you once loved in your ears and not a high-pitched ringing like tinnitus. By lunch time, the volume is up a bit and you aren’t feeling quite so comfortable about a monotone ringing that you could maybe learn to ignore. By 3pm the volume is up to 40%, which gets to 50% by dinner time. Heeey,… Macarena! Aaay! It’s really annoying you now, and as the evening wears on it becomes more annoying and louder. Heeey,… Macarena! Aaay! By the time you go to bed you just want to be fatigued enough to fall asleep regardless of the maybe 70% noise and discomfort. Eventually you drown out the Heeey,… Macarena! Aaay! And a fitful sleep wins out. Then the next morning the first thing you hear is Heeey,… Macarena! Aaay! That’s peripheral neuropathy. It can’t be cured but won’t kill you, although there are times when you wish it would! But Heeey,… Macarena! Aaay!

For a couple of weeks after exiting the hospital, I had Bagatha strapped and wrapped to my left thigh. The trouble is that every time I moved, the bandages, straps and plasters would become a little looser. The wound was basically weeping meat juices, and when Bagatha was over half full, it would sometimes spill its contents at inopportune times. 

Walking around our local supermarket with Bagatha was a big problem. I knew lots of people and many had heard about my hospital antics. It seemed everyone wanted to either pass on their regards or be just plain nosey. Standing around talking meant that Bagatha filled slowly, getting fuller and occasionally shifting or spilling. Then, just every now and then, just dropping out of my shorts like a colostomy bag on a bungee cord. Despite assurances to friends, acquaintances and even perfect strangers, everyone thought it was a colostomy bag and they would be absolutely disgusted when it leaked.

The only one that was glad, in fact deliriously happy to see Bagatha, was my dog. While he is just an over-bred poodle/golden retriever cocktail called a groodle, there is still a meager half percentage point of wolf in him. From the moment I got out of the car from the hospital, his nose started twitching crazily. As soon as he saw me, he looked straight at Bagatha and licked his lips. He was very keen to investigate Bagatha, poking his nose up my shorts as often as possible. Once he licked my shin bone while I was asleep just hard enough to wake me. When my eyes opened, there was a split second of indecision in his eyes and I’m sure he considered sinking his teeth into my leg. I know if the chips were down, he would eat me. No qualms about it. I saw the glint in his eye. It is the same one that appears whenever a can opener touches a can of dog food. 

That moment when the almost imperceptible whoosh of air escapes as the can opener pierces the can. That same glint appeared and even five years later, some mornings if I haven’t had a shower, it appears still. I see the glint appear and his lips curl up like Elvis Presley smiling at a teenage girl. Coincidently, when we first got him, my first choice for his name was Elvis Pawsley. I got outvoted and he is called Yogi Bear. I am sure he regards me as a last resort picnic basket. One last word on Elvis Pawsley the groodle. I remember the days when cross-bred mongrel dogs were free. Now if you can convince someone a poodle has been across your dog you can call it a schnazoodle and charge two grand a puppy.

Lots to come from Lesbian Llama Farmers in the Sierra Nevada’s. Tennessee Red Necks and their gun racks. Six-year-old Catherine Louise Smythe-Brown the cat assassin. And why Wembley in London at lunch time is scarier than Harlem in New York at 2am.