I’m a bad patient – being an ex-nurse, that’s regarded as a truism – but I’m also impatient, not a patient that I’d like to nurse. I was reassured by a kindly nurse after 11 hours of surgery that everybody loses it after a few days, simply from the lack of sleep. I still had to apologize to a couple of nurses because I arced up at them – such is the interpersonal cost of anger(as my counsellor and friend would say).
But I think sometimes it’s worth being a bad patient because there’s a lot of bad medicine around out there and as a patient you are on the bottom of the heap. Being hospitalised is the medical equivalent of being certified, you have no rights except those that you can assert for yourself. That assertion inevitably involves you treading the fine line between aggression and tears, between resignation and anger. For me, it involved a lot of praying to get through the pain and discomfort and to manage the emotional turmoil of helplessness – besides which the Bible was the only book available, and you could read it in disconnected passages – why not the Koran, the Dhamma sutra, the tao te ching? Never mind, the Bible is at least as worthy of attention as any other great religious text and there is considerable comfort for the helpless to be drawn from it’s message of love and faith. A prayer or a mantra is something that the mind can cling on to when the seconds seem long.
Then there are finally those moments of grace when you look out the window and realize that you have survived and that the world is shining and beautiful. The sigh of relief and the prayer of thanks when the surgeon comes to you after a week and says that the microscopy has confirmed that, ‘we got all of it’.
There is nothing that can prepare you for the shock of major surgery and the physical cost of recovery. Even 6 weeks later I am still weakened and tired – the process of recovery is a gradual thing clawing back a bit of strength day by day and some days losing out to sleeplessness or complications.
Speaking of complications, one should avoid Friday discharges from big city hospitals especially if you are going to fly off to a country town as I did. It seems that there is an inevitable cost of iatrogenic disorders that accompanies surgery, something that was feared in the 19th Century and earlier times, but which it’s my experience has not changed today. I have learnt the hard way to assume responsibility for my own care because leaving it up to doctors or nurses simply leads to bungles and troubles.
Arriving home on a Friday, I stayed with friends that night and broke out in a massive sweat that night. By Saturday night I had borrowed a thermometer and confirmed that I had a temperature of 38.1. So after speaking to the surgical ward in Perth I took myself to the local Casualty department to try and get admitted. Bad move. I got sent home with a couple of flucloxacillin tablets, ‘come back in the morning’, this despite the fact that I had a discharge summary that was less than 48 hours old. So I come back in the morning, after another sleepless night. Bad move. The doctor on call, is not my GP, but one known to have a terrible reputation. Fortunately the nurse in Causalty is one of these true heroines of nursing. She’d seen me the night before but had been on triage and was ‘pissed off’ that I’d been sent home. Nevertheless, with a combination of guile and skill, she got a cannula in my arm and a dose of IV antibiotics and persuaded me and the (bad) GP that I should wait until Monday to get admitted under my own GP. ‘hospitals full’, she said. There was a remarkable number of empty beds when I finally got admitted on that Monday! But I’m eternally grateful for the white lie, I saw the GP in question deal dreadfully with a young man in the bed next to me during the following week.
So I sat outside my GP’s office on Monday morning – ‘give me the hard core antibiotics or I will kill you’ – I’d had 3 sleepless nights by then. Well he did, and while he was at it he wrote me up for some hard core analgesia (oxycodone) without asking whether I was in any pain. It was an instruction from the surgeon in Perth. Pack drill.
3 days later I partially dislocated(subluxed) my shoulder trying to turn over in bed having been frozen in position as I nursed my precious cannula (that nobody wanted to replace with a proper line) and doped to the eyeballs it was remarkably easy to do. I felt the snap and some discomfort but the next morning my mind was distracted from this by the fact that the cannula had finally tissued. These days they allow nurses 2 goes before calling a doctor to insert an IV line. Of course they don’t have specialized nurses in country hospitals who do this all the time. It’s a skill that only comes with practice and it’s the patient who gets to experience their sporadic practice. This is called improving patient care.
The next day after having dealt with my constipation caused by the combination of iron and oxycodone. ‘Yes I can administer my own suppositories’. I decided to refuse the oxycodone –‘We thought that was brave Bob’ – she said 2 hours later as my back went into spasm. It took me 24 hours to work out that I’d had enough oxycodone for my body to think it was a habit. The GP (not my GP, just one from the group practice) had decided that I could go home on oral antibiotics. I had decided that I was going to ‘cold turkey’ off the oxycodone. So I went to my friends place and threw myself into some intense rounds of Chi Kung – the first that I’d been able to do in 3 weeks – took aspirin and fought the demons through the next couple of nights.
I recalled my time back in 1974 when I had helped establish We Help Ourselves(WHOS) in Canberra. I was never partial to heroin but as a social activist I had witnessed the death from an overdose of a great poet, Michael Dransfield. WHOS was astarted by ex-addicts prior to the widespread use of methadone. It had two rules - cold turkey is the only way to go and if at first you don't succeed you're doing about average. I made the mistake taking some panadeine on my first night and after whipsawing into convulsions I recalled those two rules to my friends and my mum the next morning who were still putting me up and putting up with me . I wanted nothing more than to return to my own house with it's trees, bandicoots, birds and Ebony, my rat-hunting cat.
And God provides. I finally got into my own home, which had been cleaned and renovated by my friends who had come together over the previous weeks to support me. I was overwhelmed. One of my Noongar friend’s had found a black beanie, with yellow and red bands and it was lying next to my computer as I walked in the door. It has hardly left my head since then – the strength of the Land is with me. I settled down to endure a week of painful sleep management with a painful shoulder that I had no diagnosis for.
Ah but “ Can’t do that, computer says no”, we can give you plenty of drugs but anything that involves real people and real help is another matter. The surgery had left me with no teeth and one side of my face paralysed and I was unable to eat properly or speak without spitting. It took 3 weeks of asking before I got to see a speech therapist and I couldn’t get a physio referral at all and ended up paying a private physio to diagnose and treat my shoulder. Hard if you’re living on a pension and have no car.
I’ve had great support from friends and family and from a few heroic nurses who really care and who are better at working the system than me (and I've been sustained by my daily Chi Kung regimen). But I wonder how people who don’t have my knowledge and my network survive.
I’m about to go to Perth for 6 weeks of chemotherapy and radiotherapy and I discovered yesterday that they hadn’t removed all my teeth as I was told. I’d been dealing with a recurrence of candida (thrush) in my mouth which should have stopped once I finished taking antibiotics. So I was having a good look and I find a dead, infected molar in my remaining upper jaw. So when I go back to Perth tomorrow I expect I’ll still be a bad patient demanding it’s removal before they start and screw up their precious timetable and I expect the computer will say no. But I intend to live and survive so I’m damned if I’ll be a good patient and lie down and die. Not just yet, anyway.
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