Baby-bibs and poached eggs 1

In the days when I was doing research at the Australian National Library in Canberra, I would usually stay in a room inhabited in term-time by an undergraduate at one of the Halls of Residence at the National University. It was cheap, but it did the job. All I needed was a bed, breakfast and dinner.

Source

   This brings me back to the subject of food, about which I'm going to recant somewhat my first blog entry on hospital fare, written a bare two days after admission. On closer inspection of the menu, choosing wisely, and with a little luck, there was no call to be as pessimistic as I thought. After all, there's no need to eat every item offered. And there are some sensible menu alternatives to blowing up my belly like a too-compliant balloon.

   The trouble is, one thing has never changed for me. I got a tray at Garran or Bruce Hall in Canberra all those years ago, and placed upon it my choices of main, dessert, and something else, and sat on my own of course. What remains is that I continue to have an overpowering desire to dispose of it all as quickly as possible.

   Why? There's no need to rush, but some instinct, maybe very primal, told me to belt it down like a sheepdog disposes of something that may deserve Masterchef appreciation, especially if stolen from the shearers' kitchen. Don't scoff. The quality of their food is often a damn sight better than what you're eating.

   But something demanded haste. I think it's the fact that it was all sitting there on my tray, glaring balefully at me, so... down the hatch with it.

   This long-winded prologue is to say that the items on that tray aren't much different from what's in front of me now. Soup, main, dessert, tea. I'm offered white wine as an alternative, and red, though the red is only with my doctor's approval. I doubt I'd have much problem. In the past I've sat over a glass of decent red quite a few times with my doctor in my lounge-room.

   My good friend Austin remarked in a communication with me today that he was contemplating Newtonian laws of physics – as you do – primarily regarding the one about For every action there is an equal and opposite reaction. The reason is slightly obscure. It is that his beloved wife, Jackie, was ordered by Tracey to desist from bringing her wonderful feats of cookery while I was away, because we had an an embarrassment of riches.

This was no slight on her admirable dinners but because I was here eating hospital food. Otherwise, there would have been no problem. I'd take up the slack and ensure our fridge is not over-full. In fact, I don't know why she didn't retain the offer anyway. Insurance, that's called.

   Austin's grievance against Newton was that because I wasn't fulfilling my role in satisfying Jackie's compulsion to cook, he was obliged to front up and fill the gap as primary consumer, which he doesn't mind in the least except for the Newtonian law, the reaction being evident in a sudden strain on the old belt buckle. Equal and opposite reaction, get it?

   Belts never lie. To have to yield another notch is a sad thing, but the belt is uncompromising in its honesty.

   When I reply, it will be to tell him I think it disproves that other adage, What goes in must come out. Some of it may, but the remainder sadly obscures the muscular six-pack that lies beneath the belt.

   I was taught as a kid to eat what was on my plate, or it somehow threatened the lives of small children in Africa. The truth was that I never had the least difficulty with that in any case. I'd happily come back for more, especially lemon sago and custard. I could have done over at least three plates of that, not really because of its mysterious beneficial effect on pan-African health, but because I was a greedy pig.

   The fact is that when it comes to hospital dinners, whatever isn't eaten is thrown away. In times past, restaurants and places like this hospital had deals with piggeries to supply them what was good leftover food. Pigs don't have the least objection to beans and gravy accompanied by jelly and custard garni de limp salad, all in one main course plated for trough.

   My point here, drowning in sogginess of my own description, is that it is sleight of hand to argue that in a hospital you should eat everything down to the last brussel sprout or it will be wasted. It is no more valid as an hypothesis than that the children of Africa will suffer from my leaving half a large chicken on my plate. Either it goes down my gullet and increases my appetite for more unnecessary food or it is scraped into a bin and goes elsewhere.

   I had hopes that this would end up an artfully constructed story; a rich smorgasbord of past and present, but I see that I have failed. It's like an Hawaiian pizza and vanilla ice-cream all mixed with that Velvet Soapy cheese that comes in a plastic sealed pack you can never open, with three Jatz in another pack you can't open either.

   Imagine the difficulties with just one hand.

   I don't have to.

   Oh dear. Someone's throwing up. This soon after dinner too, poor soul.

   What about the bibs and poached eggs? Oh hell – I didn't get round to them, did I, but I'll finish next time with a brief story only about those two – OK? I've got pills to take.

Baby-bibs and poached eggs 1 | Baby-bibs and poached eggs 2

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Beautiful hospital 2

Armidale Private Hospital

I return to this theme for a second time and then talk about things that might help novice hospital goers and families.

   I've now been here long enough to understand some important things that I never did before. "Why do they wake you so early?" is a common complaint. "I was just getting some good sleep."

   There's a good reason, and unlike what some people think, it's not simply to suit doctors and nurses. It's about us, the patients.

   Those early observations ("obs") are taken then to get what is probably the truest reading of the real state of your system. Taken again, later in the day, the comparisons can be valuable and revealing.

   In this hospital, they'll get you a cup of tea if you like, and a plain biscuit. I'm steering clear of the biscuits now because I put on weight here and it's not good weight.

   You can go back to sleep if you like, or snooze maybe, but it's my time for exercising a little and getting on the computer.

   Breakfast is at 7.30 or so. Pills and Clexane jab, scrupulously monitored. After that, it's ablutions time. It's not long until morning tea and other things. It isn't a peaceful time. I may get some writing done or I may not.

Denise comes in with the breakfast tray, telling me what it's like outside.

In here I wouldn't know.

"Big frost and then fog. But it's a nice day."

I'm in the chair, where I prefer to eat. She puts the tray on my lap, the whole box and dice. That's how I want it. She's already opened the various items in sealed containers that are a nightmare one-handed. It's not in the job description but she does that.

The nurse to dispense pills hasn't yet come, so I hold back the fruit. I always have the pills with food. Tell ya why later.

   The "early" food, now I see, is to get the body working. With luck, the regularity of the regime gets things going, and you may take that in the colloquial sense. People are more likely to complete the hardcore toilet activities, and before showering, so that the body is clean and fresh for the day. It all takes time so it's in the patient's interests to get it all completed as soon in the day as possible.

   This is why I say it's patient-focused, though it does have time-planning and workshift benefits.

   Tracey tends to come after that, and information between us is up- and down-loaded. We usually have lunch or a cup of non-hospital coffee. When she leaves, I do more reading and writing. I really don't want visitors, not because I don't love them, but because I find myself exhausted by the pleasure of their company. Emails are good.

   I'm not being sarcastic. I have many delightful friends and while they're here I often don't want them to leave. But there's a price to be paid later, in seizures and debilitation.

The morning hit-list

Halfway through breakfast, Sal comes in to dispense the pills. She checks them off against a complicated list. I use the checklist with trade names of the pills on the list Tracey prepared, with photos. It's brilliant. Sal and I agree she's got it right.

She always gets it right.

"Which side of your tummy do you want the Clexane?"

I seem to remember the nurse used the left side yesterday. Alternation helps.

"Do you have a preference?"

"Nah. I'm...." She searches for the right word.

"Versatile? Ambidextrous? Multilingual?!" She laughs.

"All of those." She checks out with another nurse that she's got the dosage right. It's the rules.

She's a jabber. Well, Sort of. Little jab, very careful. Some nurses slide the needle in; others treat my belly like a dartboard. Lord knows they've got plenty to aim at. Strangely enough, the latter method is just as good from my point of view. Sometimes it hurts, sometimes not, no matter which way. After all, it's a pinprick. At worst, a bee-sting.

   At any time through the morning, medical people come and go.  There are consultations. Physiotherapy. Serious discussions. Somehow it's impossible to write. I try to sleep for part of the afternoon before dinner time.

   Once all that's over, with luck, I have my time. There's a good quality TV up there. I don't watch it much. I have things to do. I get to meet friends online via social media. Finally, I call for a nurse who readies the bed and gets me settled in.

   Me? A grown man being put to bed like a baby?

   Yes. I need to turn on my side. I may need help. Being too proud (let's call it what it is – "stubborn") may put you at unnecessary risk, and if it goes wrong, it can be disastrous.

I've finished breakfast and now I have a problem. The breakfast tray. I don't have the strength one-handed to lift it, gantry-like, to the one place possible. I'm a beached whale. I could call a nurse, but the bells from other patients are blinging like poker machine bonanzas. I don't want to distract them. I wait, pondering.

Denise gets to me. She's after the tray.

"Will no-one rid me of this troublesome tray," I beg. It's a bit early in the day for bad comparisons with poor old Becket, but she's happy to oblige. I am free. I put the laptop on my tray, adjust the chair so my legs are up, and here I am again.

   A word about this hospital. Firstly, the building is neat and unpretentious, with internal walkways through to the public departments such as Oncology, and to the hydrotherapy pool. It was possible for Tracey to wheelchair me to Oncology from my room while it was freezing outside.

   This story shows the quality of treatment and patient reaction to their stay here.

Armidale Private rated NSW best private hospital again!

Armidale Private Hospital has been rated the best private hospital in New South Wales for the second year running, according to the nation's largest and most comprehensive survey of patient satisfaction conducted by leading health fund Medibank Private. The hospital was also rated best Regional and Rural hospital in the country.

   A little about staff. I think I've already said how dedicated to their roles they are, and do everything possible to provide comfort and assistance when needed.

   I've always tried to understand when they are likely to be busiest and to restrict requests at those times to the minimum. For example, many of the older patients like to go to bed around 8 pm, and hearing the call buttons pinging isn't the time to ask for a mobile phone to be recharged.

   I now tell all staff members who are about to shower me that I have lost all modesty. It's not quite true but helps enormously. Not that they have any embarrassment themselves; they've seen all this a zillion times before. They don't feel they have to place hand washers strategically for my sake. They just go for it.

   Only now can I appreciate the experience of being in a place like this. It's a pleasure to be able to press that button without guilt any time day or night and be attended to by highly professional nurses [so far all female, which surprises me, but it wouldn't matter what their gender] who seem genuinely pleased to make me comfortable. They care. 

   It takes away the guilt factor for me that this is their job and they get paid for it, but they take immense pride in what they do. This is something most carers do purely out of love.

   More importantly, their devotion to their patients is totally genuine.

   I've more to say about the hospital experience, but... another time.

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An all-too-familiar confusion.

I have been working on another story in praise of this hospital and its staff, when this came up tonight. I thought it was worth holding the other story over for. This took place today. Friday, 26 July, 2013. It won't be news to Tracey. It happened all the time at home.

  

This is exactly how my green
jelly didn't look! Source

"Denis."

   "Denis!"

   I am suddenly awake – one of those sickening starts as if your bed was on fire."

   "I've brought your tea."

   Tea? I don't get it.

   "What time is it?"

   "Half past five. I'll put the tray over here till you get up."

   What? Tea at 5.30 AM? What's going on? Why is a cup of tea coming now?

   "I'll serve the others and come back when you're in your chair."

   I'm still totally disorientated.

   "Busy night, was it?" I ask on her way out.

   "It's pretty busy."

   Somewhere in the deep dark recesses of my brain it registers that she used the present tense. OK.

   My heart is still thumping. Lucky they don't come in to do obs right now. It would about 600/something.

   I'm still too groggy to work out what's going on.

   I get up, and carefully manage the couple of steps to the chair, sit down and have a drink of water, and a think.

   Yep, by the analogue clock, it's tweny-five to six.

   Then the penny drops.

   I have been in one of my dead-to-the-world afternoon sleeps. It's 5.35 PM, dopey. You've been sleeping 90 minutes. Less actually, but that another story.

   I wouldn't mind peeing, but she's here now. In the light I see it's not the nurse, but is indeed the Tea Lady. She's wonderful. Definitely a legend in my lunchtime.

   My long association with large organisations tells me that in a new one you observe as quickly as you can who are the true power brokers. In the university they are your Administrative Officers. In the old days they were called Secretaries, usually women, who were paid far less than they should have been, stopped the place falling apart and untangled the messes academic staff made. They aren't called that any more but they still do the same thing, namely, the real work.

   Fortunately, I always got on well with them. I'm looking at you, Trish and Gina. Loved you then and still do. If I didn't, I could safely say I don't. But I do.

   You do not cross these women. Do so as an Academic and you'll regret it. 

   That's all I'll say on the matter except that they can find a thousand ways to mess with you. In particular the mess you got yourself into. But if they love you, impossible becomes sorted like magic. A quiet phone call to another AO somewhere deep in the bowels of the Admin Building, and low-and-be-old, the problem ceases to exist.

   From a whole week's observations here I am getting the message that the Women of Power are the Tea Ladies.

   Look, we're not going to get into a spat about non-gendered terminology, are we?

   Denise is a Lady with a capital L, and if she minds me calling her distinguished, obliging, and charming, she'll tell me. Right?

   It's the Tea Ladies who seem to bring everybody to the same comfortable level – staff of all sorts, patients. Bless them. This is true democracy in action. Look and learn, politicians.

   Anyway, on the subject of tea – as a meal description I mean. Growing up in the bush, there was breakfast, dinner and tea. When I moved into city circles, it was breakfast, lunch and dinner. I gather some of the upper classes in England have their own variation. Don't ask me. When I'm made a Lord of the Realm I'll know instantly.

   So you can see where my confusion arose. I interpreted "tea" as some weird new hospital rite all were bound to participate in at 5.30 AM.

   I'm rather glad it was 5.30 PM, not AM. Can you imagine being face-to-face with a dazzling green jelly at five-thirty in the morning?

   Disconcerting.

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Updating

If you don't usually go to the medical (WHAT'S NEW!) section, it's probably worth a look today and yesterday, just to get the feel for how I'm travelling. 

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This beautiful hospital

It's true. It is beautiful. I'm feeling a bit guilty making fun of hospital food, fearing that my new friends here might take it personally. Hospital food is universal. That much is apparent. I wrote this as a comment on the last posting:

One thing I want to emphasise. In spite of having a little fun with the food, the last thing I want to do is give an impression that the hospital is at fault. They have to feed a vast variety of people many of whom would regard the way I like food cooked as wrong. Many served by a rural hospital, particularly the older patients, expect vegetables to be what I call sadly overcooked.

The staff here and facilities are wonderful, especially in view of severe budget restrictions. Within two days, I've learned the ropes and fitted in, or we've adjusted to each other. I'd hate any of them reading this to take my fun personally when they look after me so well and I'm so comfortable! 

 That's all. Now I can go to sleep happy!

  

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Little delights of hospital life

I don't know how this will come out. Usually I have an outline of a posting in my head before I start. Not this time. I'll probably do the Hemingway "stream of consciousness" thing, but it might be a stream of nonsense.

   Firstly, I've got to say that I've been very lucky to get this room. It's meant to be for two occupants, but no-one's going to be in the other bed, which is out of service. It has a large window so you know there's a world out there.

   If you had this much space in a standard motel room you'd be happy.

   Not only that, it's down at the end of the quietest end of the complex. Few staff pass by and no visitors. Occasionally there's loud talking at staff-changeover, but it's rare.

   For a first-timer like me, the admission process appears to set off a hive of activity. Tracey wheeled me into the room where a half-dozen were people rearranging things. I won't go into details but they were turning a room for two into as spacious as possible a room for one.

   An "electric" recliner chair almost like mine at home was found. Excellent. I still press the UP button for DOWN and vice versa as often as before. That will never change.

   Staff immediately did the standard things to me – blood pressure check, temperature etc. It's all a bit of a whirl because of my rapidly failing short-term memory, which is just as well because describing it is unexciting. I was banded round the wrist and it helps me remember who I am.

   That's a joke, by the way. The real reason, apart from matching pills with patients, is that they'll know who I am should I escape. The real joke is that I can't escape anyway, because for practical purposes, I can't walk. I'd need an accomplice. A lunatic, clearly.
 
   Let's get down to the fun stuff. Meals. I got there not long before lunch, which was a mistake, because I got lunch. It didn't look too bad but that was some sort of illusion. I'll describe dinner instead.

   I should say firstly that I chose this dinner from the menu which I was asked to fill in immediately after lunch on the first day – my meals for the entire day today. I admit that my luncheon experience had made me somewhat wary and I tried to evade certain items.

   I should also say that short-term memory loss means that every meal is a mystery, because I have no idea what I ordered when it comes.

   After I opened each dish on the tray, the mystery remained.

   The soup, when stirred, was double-layered, like some cocktails you order at the bar, but not green and orange, and without the zing. It was the colour of various sorts of mud.

   Tasting it did not make it any clearer. Not that I'm saying it was inedible, but I'm glad I wasn't a Muslim or Jew, because I found out later, from the list of what I ordered, that it was pea and ham.

   I ventured on to main course. On opening the lid, I was puzzled.

   By the look of them, the beans had been boiled for a good two hours and were as limp as little green very dead worms. They hung so wretchedly from the fork that I wanted to give them a decent burial. The corn, which turned out to be the best part, was straight from tin, but given a half hour in the microwave for good measure. The broccoli had probably given up the ghost even before boiling.

   Beside these were two substances. I did recognise immediately an oozing poultice of mashed pertayta (potato) of strange hue, which failed miserably to bear its own weight. Something purporting to be fish with baked potato on top occupied an adjacent spot on the plate, but I'm sure it had never made acquaintance with an oven, and could easily have been confused with the sorrowful potato plaster beside it, except for a rich layer, underneath the faux-baked potato icing, of some misbegotten creature that must have lurked in the ocean depths and challenged any Darwinian theory by surviving.

   That is, until it made it to my plate. It may, on reflection, have put up a good fight. Admittedly it was solid and tasted awfully strongly of fish.

   The other possibility is that it originated in a can of sardines.

   But the tapioca pudding wasn't bad, if you didn't look at it too hard. It reminded me somehow of my childhood, except there was no lime jelly. Pity.

There will be a part two. I'm sure this is fascinating to my masterchef friends and will give them a reassuring feeling of superiority. Either that, or I've given them some hot tips on unique dishes to have a go at.

  

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A little vacation

This may come as a bit of a surprise, but in my entire life, I've spent only three nights in hospital. All of these were just after the brain tumour was detected.

    The first was the Friday night after I had the first seizure. That one was mainly to observe me, although a CAT scan was performed on my brain a few hours earlier. Armidale hospital had no facilities to do what was really needed – an MRI brain scan, which was far more accurate than the CAT scan I'd just had. I was supposed to stay in hospital for the weekend and be driven by ambulance to Tamworth on the Monday for the MRI.

    We had other ideas. Well, certainly I did. I felt quite good after the Friday night in hospital, and we persuaded the doctors to discharge me the following morning. Tracey would drive me Tamworth on the Monday rather than waste the whole weekend twiddling my thumbs in a private ward in the public hospital. Tamworth was just a day trip.

    So that was Night One. Nights Two and Three were spent in hospital at Newcastle, after the craniotomy a couple of weeks following the MRI, to remove what they could of the tumour and get a biopsy sample.

    That was it. It's a bit of a bit of a blur really. I never went into a hospital again for an overnight stay. I had daylight consultations in Melbourne with specialists and for radiology, but no admission.

    But today, Friday, 19 July 2013, I am going into hospital for several days. I'm not sure how long. This is for a variety of tests, the main ones to try to determine the best method of seizure control. If you've been following the medical section of the blog, you'll see the seizures have been pretty much out of control. In the hour since I started writing this, I've already had three minor ones.

    This stay in hospital will have the added benefit of giving Tracey a little break from the incessant and increasing demands the rapid decline in my health have placed on her. We both are happy about that. It can be a time of options review.

    But in other ways I face the period with some trepidation, because I hardly have a clue about what happens in a hospital ward as a patient. I'll have a private room but all sorts of questions come to mind. I'm not used to pressing a buzzer for help with the things I need to have done. I'm not used to strangers attending to what are for me very private functions.

    I can't even do now what I did as described in the previous posting. The recent seizures have wrecked my ability to use the walker safely. I can't stand up for more than a minute or so, and only then with something to lean against or hold on to with my good hand. My knees buckle, both of them, because the left leg can't take the weight of my body after the right starts collapsing.

    It's all terra incognita. I'll feel badly about calling for help with what were to me tasks I could carry out a week or two ago. I've never been showered by a stranger or attended to for basic toilet functions. But as Dave said, and Tracey reminded me, it's their job. It's what they do. They're the "slaves" I wrote about.

    Women generally handle these things better than blokes. Many have had babies or procedures that involve people poking about in very private areas. Quite a lot of men don't until they're involved in a medical emergency, as I was at the age of 63.

    Well, the men might have had a routine one or two that take just a few minutes with a doctor prodding around in odd places and experiencing strange and uncomfortable sensations. I speak for myself here!

    So I might as well make a virtue of necessity by describing on the blog in not too much detail what I'm going to experience in coming days. This is dedicated mainly to the chaps who will probably go through at some stage what I'm about to. I hope it's enlightening for the rookies.

    No doubt some of the women will sneak a look in as well. They can't resist, I'll bet. Maybe with just a little schadenfreude topped with – dare I say it? – frisson.

    Fourth seizure for two hours happening here....

    However strange this will be, it's definitely time to try to do something. I can't put up with constant seizures without making this effort.

    Off for my little sojourn in a few minutes. Watch this space.
 

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The trek

I'm back here, in my "electric chair". I've been on a trek to the bedroom, one which I make many times a day. I drink a lot of water, you see, in the belief that constantly flushing my overworked kidneys helps preserve them for that little bit longer.

    This trip becomes a greater challenge daily. It demands micro-planning on a scale that the bloke I was five years ago had not the faintest ability to imagine – a person possibly like you, but I don't presume that, because you might be in a wheelchair or confined to a bed, or you might look after someone who's in this position.

    The trek. Firstly, I must discipline myself not to wait till the last minute. That's not as simple as it seems. There's always some last thing to do on the computer. Tracey knows this all too well when I'm supposed to be going to bed, and it must drive her bonkers at times, because "last" turns into second-last, and something always goes wrong at that critical point that takes more time. I constantly make resolutions that it will never happen again, but whaddyaknow.... Anyway, let's come back to the point.

    It's time to take another loo break. Like, now! But, firstly, I have to put the computer to sleep. That is, my laptop Hal, with a sentience of its own, primitive as it is. It takes an eternity for the laptop to close its one big Cyclops eye while I sit squirming. 

   Just as I pick it up by its corner with my one good hand, I see that the space for it on the little table beside the chair is occupied by a glass of water. I sigh, put the laptop back on the tray on my knees and move the water to clear the required space. Good. Hurry. Laptop gripped firmly with just enough strength in the fingers, my arm swings across like a tiny crane and settles it neatly into its spot. Then I place the tray on top of it. Hurry.

Lift recliner

    Now, I must elevate the chair until it's high enough to help me stand upright. It's like an ejector mechanism except that when you're in a hurry it seems like snail's pace. The walker is close enough. Aided by this lifting, I struggle to my feet. 

   The left leg does all the work. It gets me high enough to lock the right knee into position. It's as if that knee has only two modes, on and off. Locked and unlocked. That's not quite true but it's close.

    Now, to grip the walker handles. The left is no problem. I depend on it not to be one. The ease with which I grip the right depends on how long ago the last seizure was. It was barely five minutes. The hand wanders around jerkily and alights clumsily on the handle at last. 

   With the left hand, I move the errant fingers – that's most of them – into where they should be on the handle, and tell the hand to grip. Aloud. There's a remarkable reason for that but sorry, I'm in too much of a hurry to explain. I haven't even got under way yet. The hand locks on.

    I lean on the walker with both arms and put the right foot forward, with the arms taking its weight. My arms are now in effect one of my legs, doing its work. If I put the good leg forward first, it's bad strategy. It means I must drag the right, pulling it along like Quasimodo, or the guy with a gammy leg I remember as a kid. Everyone called him "Stepper". He dragged his leg every step of the way. Not I.

    I walk gripping the walker firmly with both hands, full concentration, putting my worst foot forward and bringing the left up to it. Then right foot forward again. It's as cumbersome as it looks and not quite as shaky, but it's the best way. Trust me. I'm a doctor. OK, so not a medical one.

    Concentrate only on getting there, not on the relief it's going to be when you do, Dr Bozo, because it does strange things to you to anticipate. Just get there.

    Right. I'm at the spot, but mustn't start anticipating. I have to turn the walker around, to get a secure hold on the bar with the left hand. The right wants to retain its grip on the walker but I need both hands free once I'm balanced. It's been locked into that grip so long that it's not responding to command. I have to let the fingers release reluctantly of their own accord. It's a bit like those of the person in the movie do when they're trying to retain that failing grip on the cliff-edge twig.

   I undo the robe, one-handed of course. Thinking about not thinking about the relief to come is as fatal as thinking about it. The knot slips, Dieu merci. The robe falls open. One handed, the pants are dragged down. Now be careful, some things need two hands if you want controlled action. Garments are to be kept clear, right? The right hand has to be called into the operation, even with tremors.

   Too much information? I know you didn't ask, but bless you, you've stuck with me this far and you'd help if you could. Maybe?

    As I said, this is an operation that demands balance, so – no hands on the walker. Why don't I just sit down? I have my reasons. I don't want to discuss them here. Not now. I stay on my feet. I don't fear a seizure as I used to. I anticipate better than I did.

    Whew! All done. Crisis averted. Ablutions performed. All's right with the world. Decency preserved. But I have to tie my robe, with only one good hand. I have a method. I get it done.

    Now to get back to the lounge. The activity has brought on a seizure. I am close to the bed, so I can sit on it till I recover. The right leg is more likely to collapse just after a seizure, and the right hand will have little grip on the walker. The arm will be weaker too. Give it a few minutes.

    When I feel the time is right, I stand up, and start the journey back. Going round the corner from bedroom to lounge is most dangerous. There's more transference of weight between feet, more chance of knee collapse, so it's concentration all the way. Don't hurry. There's no need.

    I'm here. I shuffle backwards square on to the electric chair and sit, as gently as possible. I have to pick up the controller, but it's in the right side. It hasn't occurred to the makers that the right side of the body might be paralysed. Would it have been too hard to have a left-side socket as well? So it seems. But again, I have a work-around.

    I can use the failing hand as a hook to pick up the controller. I get it close enough to the left hand to transfer the controller and press the button, and sit in relative comfort again. I put the tray on my knees, and gather strength to crane the computer back into place in front of me.

    Hello world inside the laptop, until next trip to the bedroom. It will come soon enough. Too soon in fact.

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A student teacher's thoughts in 1965

My daughter, a teacher of children in disadvantaged circumstances, has been visiting. She left for Melbourne by the morning train. 

   It's always a sad time for me when my daughters leave, each time more poignant than the last. Those who know my story will understand why, as will those who are or have been in similar circumstances.

   This isn't about goodbyes, about which I have written before and I won't come back to here, but it's related to Sylvia's visit this time. 

   I was a trainee teacher in 1964 and 1965. Tracey gave Sylvia my old teaching prac diaries to look at. I'd kept them but never opened them since graduating. Notes of lessons mostly, with supervisors' comments, but she found what's below as well. I had reached the ripe old age of 17 when I compiled it. The language was very much that of the times. Note, for example, No. 8.

   For ease of reading, I have transcribed them below the image.

Points on Encouraging Enthusiasm

1. Teacher should be a sound organiser.

2. Must take care and use foresight in preparation.

3. The tasks must be carefully graded.

4. Difficulties at one stage should be overcome before others occur.

5. One process at a time must be taught.

6. Short problems are often just as provoking as long ones.

7. Correction should be prompt and careful.

8. The weaknesses of dull children should be investigated, and action taken.

9. The efforts of bright children should receive recognition.

10. Each process should be presented in a variety of ways.

11. Frequent time tests and team races.

12. Work of special merit should be commended.

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Advice, blood and brains

A few years ago, the health of the aged mother of a friend of mine was deteriorating rapidly.

   There was nothing odd about this. It was part of the perfectly natural cycle that starts at birth and ends with death. The body is the physical vessel for the survival of the human gene, and the time comes when it's best from the point of view of evolution to discard the beat-up old shell and start all over again with a brand-new body.

   She was dying. It was at this point that cancer was detected in her body, and it was rapidly invading every organ. "Best to make her as comfortable as possible," said her GP, and see how things go.

   It was sound advice. My friend did not worry the old lady by telling her about the cancer, and she was unaware of its existence in her body. They did things together and enjoyed the time as much as possible doing a few bucket-list things as the cancer spread.

   Then an entirely unexpected thing happened. Blood tests, which were confirming the steady growth of the cancer, started to give contrary readings. The cancer retreated, and before long disappeared from her system altogether.

   They continued to do things together for two years, until her mother died of something quite different and what would be expected in old age. There was never any further evidence of the cancer that should have taken her life earlier.

   This phenomenon is far from unknown to medical science. It happens sometimes, but there was no apparent reason why it had done so in this case.

   My friend might have changed her mother's diet, or prayed daily for it to go, or waved a wand over her when she was asleep, or made a pact with some strange deity, and the retreat of the cancer would have occurred, but she did none of these. If she had danced naked in the moonlight, brought in a voodoo man or ritually slaughtered chickens, then the cure would have been ascribed to the method, instead of the simple reason that it sometimes just goes away.

   The reason I mention this is the rash of advice and treatments I've been offered since wide publicity was given to my case for other reasons. Some of this was sane, sensible advice about what had been used by others in the case of their or a relative's cancer. I appreciated knowing about it and comparing it with the mountain of information Tracey and I had compiled over the years since we've been dealing with my brain tumour.

   Much of it, well-meaning as it is, has no relevance in my case, or isn't something we aren't already doing, adapted to my circumstances.

   What many offering catch-all treatments don't understand is that what applies to cancers of the body don't always apply to those of the brain. There's what's known as the blood-brain barrier, a biological evolutionary strategy that has served life well by preventing the blood from carrying many toxins to the brain.

   The disadvantage is that treatments which may work effectively for other parts of the body in restraining cancers are simply irrelevant for brain tumours, because the active agents, the things that make treatment work for those other cancers, just don't get through to the brain.

   That's why treatments for brain tumours are often different. It's also why some great ideas for other cancers aren't on the menu.

   Treatments like Avastin bypass the blood-brain barrier and have their effect, for better or worse. (Ironically, Avastin is not on the list of drugs government-subsidised for brain tumours, but is for many others such as colon cancer. Figure that out.)

   As well, many suggested treatments don't take into account that all sorts of factors affect their success for brain tumours. Age, prior medical history, location of the tumour, stage detected and diagnosed – there's a stack of variables that make a treatment positive for one person, and for another, a waste of time and money.

   Suggestions about rigid diets may be negative when added to current treatments. There's a vast balancing act in dealing with each case. One size just doesn't fit all, however ardently the person putting them up believes they have the solution for me. Often they won't accept the possibility of difference. "This worked for X. It will work for you. Try it!"

   As if we don't know about that treatment and haven't factored it into our particular equation. Mention it to us by all means, but don't get upset if we know it doesn't apply in my case, or that we know we're using its basic principles anyway.

   One way or another, this tumour will probably be the chief cause of my death; sooner, it seems, rather than later. Please don't accuse us of closing our minds, or at worst, insulting our intelligence by offering snake-oil treatments in dealing with our particular variation on the brain tumour theme. We can distinguish between them and good advice, even if we already know about that advice. 

   We know the score. We know the documented history of this disease. We can separate snake-oil from sound advice.

   We know there are unknowns. We respect that. We also know fairly precisely what is happening inside me, and better than anyone else. We know about probability and how chances of life extension at acceptable quality can be improved or wrecked.

   We are aware.

____
Dedicated to Ros and Dave, who have been dealing with their case of MS for many years, and Ros's treatment for decades of her mother's case before that, and who are continually being offered snake-oil as if they don't have a clue about what they're dealing with!

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A desert flower blooms

My sister Jan sent me this today, the third anniversary of our mother's death. It's just a personal memoir, but I wanted to share it with you.

Thanks, Jan.

Memories of dear Mum   

9th October 1920 - 9th July 2010

When Mum moved down here, she had to leave her Desert Rose bush in Gladstone.  

 Mark had filled his big covered trailer with all of her favourite plants growing in pots to bring down - but this one was growing in the ground.  

 About a year later, Ken and I managed to find a Desert Rose in flower for her and she loved it. It sat on her little patio - but despite her best efforts, it didn't ever flower again. 

 She finally asked me to bring it over here. I repotted it, but didn't have any luck either.   The plant, although looking healthy enough all these years, produced no flowers. 

 To my surprise and delight, just recently after all this time, this lovely flower appeared, followed by a couple of others. Well dear Mum... it took a while... but we finally got there....

 

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It's so unfair for you!

How many times have I heard somebody say this to me? Yes, it's true - but in the opposite way to what these people are talking about. 

The good life: a recent Gold Coast photo taken by my sister Jan

   Let's look at the facts as far as this is concerned.

   We'll start with the first 60 years of my life.

   For all that time, I had very little wrong with my health. I had full strength and vigour. I had a wide choice of the best of things to eat and drink.

   I have had privileges in my life that very few in the rest of the world have ever had and who would gladly swap the life that they are living with that I've had to this point.

   I've had love and wonderful company in my life. I've had security. I've had all the things that the majority of people in the world can only dream about. I have had a life of great comfort and freedom in comparison with that of most people in the world, even though by Australian standards it has been unremarkable in that respect.

   Some would even say that my childhood on a dairy farm was a good deal harder than most. In a way, it was, but I had a happy, secure childhood, with the love of my family and people around. I lived in a small village with people who cared about each other and their help was always at hand.

   So yes, life is unfair. It has been unfair to me in the most positive way. The only negative thing about this good fortune is that it made it hard for me to understand what it truly was to be ill. Yes, I sympathised with people suffering from illness, and thought I understood, but the reality is that nothing could be further from the truth, chronic illness in particular. 

   I never suffered from depression, even though it was what took my father's life when I was eighteen. I'd never seen the evidence of it. For healthy people, it's a mystery. Why can't they just pull themselves together, I used to think.

   I still don't suffer from depression, in spite of what I've been through, but the experience of serious illness has made me much more aware of its nature and its crippling effect on the mental and physical health of others.

   What about "unfairness" since this illness hit? Let's consider it objectively. I have had access to the best medical services that could possibly be provided, and comparatively speaking, which means my capacity to pay, at a bearable financial cost. We live in rented house that consumes a great proportion of our income, but we're not out on the street.

   I've also had the extraordinary good fortune of having a partner, now wife, possessing great intelligence and experience in medical matters, with love and foresight and attention to detail that would never have occurred to me until it was too late. This is something I'll be eternally grateful for.

   If I must go into hospital, the full facilities of our medical system will be there. We criticise its inadequacies, as well we should, but comparatively speaking, it is one of the best in the world, even at its worst. To say otherwise is to denigrate the efforts of some of the finest people in the world.

   In countries I know well where poverty abounds, consider the plight of a woman deserted by her husband, often with small children at her feet. A woman with a goitre that will kill her in a terrible way has no access to treatment that here costs a few cents here in Australia. That few cents is more than she can afford. Every day for her is a fight for existence.

   Right now it's raining outside and yet I have secure roof over my head. It's cool but the fire in the lounge is burning brightly.  I think of people in war-torn countries such as Syria where young people have been living a life of fair quality, and suddenly they find that they have nothing. No shelter, no food, no safe water. A war zone like Aleppo, about which I have written, is a terrible place for civilians. They may have ghastly injuries and no access to medical treatment or medicines.

   So how can I complain when I compare my life, even since I've become ill, with the sort of life that many of them are living right now?

   Not many things irritate me, but there is one. It's where I hear the constant complaints of people who have everything in this life and don't appreciate it. They complain of inconvenience and minor illnesses and think that they are hard done by.

    Yet many of them are sitting there in front of a computer, with the whole world at their fingertips, and they have seem to have no appreciation of that at all. They have access to the greatest privileges that any human being can possibly have. Hey, if you have complaints, make sure they're the ones that really matter.

   The majority in our society have never known real suffering over an extended period of time. We can be thankful for it. I can't think of a single thing more characteristic of a stable society than a full belly for its people. I have said this before, but I would like sometimes for a complaining person with nothing worth complaining about to be dropped in a remote village in Bangladesh with $10 in their pocket, and tell them that they have to make their own way in the village for a week. Just a week. No phone, no access to an Australian Embassy – just to survive on their wits.

   The irony is, the villagers would undermine my experiment. Living in hardship themselves, they would be abundantly generous to this poor stranger and share everything they owned with them. (Still, I would like my complaining friend unused to privation of any sort to sleep, eat and attend to their ablutions in a squat toilet with the local kids peeping in and chortling through the cracks. Even for just a week, that would be salutary!)

   There are people I know in this country to whom life has been unfair in a negative way. Some in our country have grown to adulthood with no advantages, or face a bleak future, but there's a good chance that if you're reading this in front of the computer or on some mobile device it's not going to be you. Some have had misfortune they don't deserve by any standards, but which many people will never understand, and yet the unfortunate are often the ones who cope with great forbearance, dignity and compassion to others.

   There are important issues in our society which need to be addressed. Are we thinking about those and not only about the selfish things in our existence? Next time you want to bitch about something, then consider the life of so many people who have little or nothing at all. When your political party or sporting team loses and you feel miserable, keep your sense of proportion, or acquire one. If that's all you can think of, you have no reason for complaining.

   The reality is that life has been good to me in ways I can't really justify in terms other than plain good luck. Sure, I would like to live to 100 in good health, get my telegram from the Queen, and then one night die peacefully in my sleep.

   It seems an unlikely scenario. But there's one thing of which I'm certain – that when I die it will be in circumstances that are the best possible for a human being whose life has been cut short by an illness which is as terrible as the worst of them. My death may not be peaceful, but it will be as comfortable as it possibly can be made to be.

   So yes, life is not been fair to me, and I'll agree with you when you say it. But now you know what I mean. It's a very fortunate "unfair".

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The wedding we didn't have

The History of Mr. Polly has been made into
movies and a TV series, but read the book!

Today, 4th of July, is the third anniversary of our wedding day. Valentine's Day is the anniversary of our engagement. It's actually a plot. Tracey chose easily memorable days so I'd have no excuse for forgetting them.

   Given that we didn't think we would be able to celebrate even one wedding anniversary, we've done very well to get to No. 3. We're a good team, you might say. 

   I do say!

   Not long ago, I related the story of our wedding. I thought I'd share with you this time the story of a quite different wedding, that of a very lovable fictional character, Mr. Polly. 

   A lot of you will recognise it, but I'm sure you won't mind reading this little fragment again if you have. If you haven't, it's a treat. The rest of the novel's even better.

   This wedding comes from one of the most delightful of all English novels of the era. Its author was H G Wells, whose name is usually associated with science fiction. War of the Worlds, and all that. What is less well known is that Wells was also an acute observer of English life, with special sympathy for those lower down the social scale who were struggling with the massive changes brought by the times – the little shopkeepers, for example, and Mr. Polly was one of these. But then so was the father of Wells himself.

It's available free here on Gutenberg.org, but here's the wedding scene where Mr. Polly met his fate. The whole novel is beautifully constructed, funny and sympathetic. Please enjoy.

Until the conclusive moment of the service was attained, the eye of Mr. Voules watched Mr. Polly relentlessly, and then instantly he relieved guard, and blew his nose into a voluminous and richly patterned handkerchief, and sighed and looked round for the approval and sympathy of Mrs. Voules, and nodded to her brightly like one who has always foretold a successful issue to things. Mr. Polly felt then like a marionette that has just dropped off its wire. But it was long before that release arrived.

   He became aware of Miriam breathing close to him.

   "Hullo!" he said, and feeling that was clumsy and would meet the eye's disapproval: "Grey dress – suits you no end."

   Miriam's eyes shone under her hat-brim.

   "Not reely!" she whispered.

   "You're all right," he said with the feeling of observation and criticism stiffening his lips. He cleared his throat.

   The verger's hand pushed at him from behind. Someone was driving Miriam towards the altar rail and the clergyman. "We're in for it," said Mr. Polly to her sympathetically. "Where? Here? Right O." He was interested for a moment or so in something indescribably habitual in the clergyman's pose. What a lot of weddings he must have seen! Sick he must be of them!

   "Don't let your attention wander," said the eye.

   "Got the ring?" whispered Johnson.

   "Pawned it yesterday," answered Mr. Polly and then had a dreadful moment under that pitiless scrutiny while he felt in the wrong waistcoat pocket....

   The officiating clergy sighed deeply, began, and married them wearily and without any hitch.

   "D'b'loved, we gath'd 'gether sight o' Gard 'n face this con'gation join 'gather Man, Worn' Holy Mat'my which is on'bl state stooted by Gard in times man's innocency...."

   Mr. Polly's thoughts wandered wide and far, and once again something like a cold hand touched his heart, and he saw a sweet face in sunshine under the shadow of trees.

   Someone was nudging him. It was Johnson's finger diverted his eyes to the crucial place in the prayer-book to which they had come.

   "Wiltou lover, cumfer, oner, keeper sickness and health..."

   "Say 'I will.'"

   Mr. Polly moistened his lips. "I will," he said hoarsely.

   Miriam, nearly inaudible, answered some similar demand.

   Then the clergyman said: "Who gifs Worn married to this man?"

   "Well, I'm doing that," said Mr. Voules in a refreshingly full voice and looking round the church. "You see, me and Martha Larkins being cousins – "

   He was silenced by the clergyman's rapid grip directing the exchange of hands.

   "Pete arf me," said the clergyman to Mr. Polly. "Take thee Mirum wed wife--"

   "Take thee Mirum wed' wife," said Mr. Polly.

   "Have hold this day ford."

   "Have hold this day ford."

   "Betworse, richpoo' – "

   "Bet worsh, richpoo'...."

   Then came Miriam's turn.

   "Lego hands," said the clergyman; "got the ring? No! On the book. So! Here! Pete arf me, 'withis ring Ivy wed.'"

   "Withis ring Ivy wed--"

   So it went on, blurred and hurried, like the momentary vision of an utterly beautiful thing seen through the smoke of a passing train....

   "Now, my boy," said Mr. Voules at last, gripping Mr. Polly's elbow tightly, "you've got to sign the registry, and there you are! Done!"

   Before him stood Miriam, a little stiffly, the hat with a slight rake across her forehead, and a kind of questioning hesitation in her face. Mr. Voules urged him past her.

   It was astounding. She was his wife!

H G Wells The History of Mr. Polly

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