The WHAT'S NEW! page contains the latest medical updates. If you're wondering how I'm going as far as health is concerned, this is the place to start. Latest: Wed 27 Nov 2013. 7.20AM

Monday, May 27, 2013

The wedding advice I wish we'd had

A good friend of mine (I'm naming names again, Dr Ng) sent me a reference to a beautiful little piece of Dorothy Dix marital advice (not "martial", Ms Evatt, although the two terms are oft interchangeable) very recently published in the New York Times. It made me realise how little thought we had put into this aspect of our own wedding and how sadly we had failed to appreciate the spirit of the exercise. I advise you to read this little NYT story now but you better come back here straight after or I might have to ki** you. I've spent all day on this I have, so please read it.

   It was July 2010. My health was failing badly. In short, it seemed inevitable that, to put it euphemistically, I was destined to kark it within a very few months. 

   For reasons I still can't quite figure out in view of the fact that we were going for the record for the longest engagement in history, one which had begun almost last century (millennium even), we abandoned that exercise after a sterling effort of nearly a decade, and opted to get married instead. 

   So we have no engagement stamina, it seems.

   This wedding decision was taken utterly in secret, but we needed witnesses. My daughters were up here on a visit - a fair start. Wanting it to be a complete surprise, we invited a couple of friends to a fake Christmas in July celebration, except for one - my adopted bro, Captain Morgan, who was brought here on the pretext of helping move some piece of furniture - his muscles being basically the only reason we ever let him in the door, except for an occasional coffee of quality far better than he appreciates.

   He arrived in yard clothes, unshaven and otherwise abysmally scruffy after sluicing out the feed-lots for the cattle. He sat in his truck a while, somewhat surprised to witness the spectacle of a quintet of others he recognised coming in the gate. All of them were wearing unspeakably Christmassy things like, in one memorable case I'm-looking-at-you-Marg, gigantic earrings featuring an apparently garotted but otherwise cheery Santa Claus. One dangling from each ear, to be precise.

   It was a pretty nasty thing to behold, really.

   The bemused Captain Morgan was told to remove his boots caked with cowshit before entering the house, which he did with only minor objections, still trying to work out how he got the furniture-shifting date so wrong. He knew the other invitees, I should add, having played the part of a brave American gentleman who went down with the ship in our recent production of Titanic the Musical. The others he was spying on coming through my gate had been also been cast and crew members.

   When the jolly little party was assembled, having been relieved of Christmassy food offerings and a few credible bottles of decent wine, my affianced announced in her best stage voice that they had been misled (a word that looks in its present tense like it should be pronounced "missle" the way Americans say "missile" but isn't) and that it wasn't going to be a silly old Christmas in July nosh-up at all, but a wedding. In the same breath, she hastened to reassure them that the vittles were still OK as a wedding feast. I'm sure plenty of wedding receptions have featured Christmas crackers and godawful crepe party hats that make everyone look like escapees from bedlam. Or, in some cases, very reluctant returnees to the fold.

   Nor, they were reassured, was it a shotgun wedding designed to make an honest woman of the bride.

   Jackie squeed with delight and started crying, uncontrollably kissing anyone in her path and talking rather incoherently in a peculiar little falsetto voice I didn't know women could do. How a pharmacist of thirty years' doling out Viagra and blood pressure pills (often, wisely, to the same client) could behave like a thirteen-year-old who'd been smiled upon with heart-stopping lust by the School Captain is beyond me, but I was showered with tears myself by this usually-serious dispenser of pills and potions.

   It was a bit wet.

It all turned out all right.
   The men pretended to look pleased at the prospect of sitting through a marriage ceremony, although their secret objection was the delay in partaking of the bread and wine of a mock-Christmas. Captain Morgan, well into his third glass of claret, looked openly put-upon. 

   In fairness I have to say we had trimmed the actual ceremony to the bare minimum, due to my sharing the manly point of view about wedding priorities. We'd pared it right down to a sort of "Do you take this man/woman mumble-rhubarb-rhubarb" followed by "Oh - righto." and some illegible scrawls on fancy bits of paper.

No! Hara-kiri is not an option.
   Over in a flash it was. So the important part wasn't all that interrupted.

   I've lost my thread, having got all sentimental about the Fourth of July Christmas wedding. The point of all this, coming back to the New York Times article, was that we failed badly at the real purpose of a wedding, namely, the receipt of as many and as expensive a range of gifts as possible.

   All we got was fruit mince pies, a mysterious concoction called "White Christmas" and the impulsively donated Santa earrings, which I confess I have never worn, and I've never seen them adorning Tracey's delicate earlobes either. The Santa garotting image is still way too fresh in memory, and anyway, I've never had my ears pierced.

I know. We should have thought about the presents.
   Not that an ear is the only place I could have hung a Santa from (maybe both Santas, with enough encouragement), in order to signal the consummation of the marriage. The end of a chaste engagement of nine years a la Fred Nile and Silvana Nero should be marked appropriately, even in private. OK, especially in private.

   However... no body piercing is involved. And no-one else ever needs to know whether I've been circumnavigated or not.

Circumnavigation is my own business!

Thursday, May 23, 2013

A decomposed letter

Dear Pete,

Last night I wrote you a long letter on the iPad and was about to send it when I thought, "It's late and a letter checked over in the clear light of early morning is always improved." So I switched off the iPad, and went to bed.

I expect you know what's coming. I opened the iPad this morning to read over the letter draft, only to find it was back to the state in which I'd begun it last night. I'd forgotten that the mobile version of gmail on the iPad doesn't update continuously, and that you must accept changes manually or they'll be lost. As you can imagine, I was much taken aback when I opened the letter draft to find it in the sad state I just described, i.e., exactly how it was when I started.

It was a brilliant letter, of course, as are all documents that are lost without any hope of recovery, and they only get better in the imagination the more you grieve about their loss, so I did what I always do in these cases and said, "It's gone. You can't get it back. Move on."

There's no Rewind button in life. No Pause. No Fast Forward. Just the Forward button, and you usually have no control over that.

Consequently, I've made a virtue of failure and turned you into a blog posting. What you'll get here is a much abbreviated (and less scintillating, of course) and probably quite different version of what I wrote last night, although the essentials won't change. A paragraph has been reduced to a sentence, or possibly a phrase, or omitted altogether, and maybe we're both the better for that. You and [your lovely wife] didn't need to read all those compliments about what great friends you have been over the past thirty years.

I was left with this bit.
Dear Pete –

I often think of you and [your lovely wife] which must make you wonder why I've not kept in touch properly. It's not you, it's me! All this time I've put it off, because I very much wanted to explain things about my religious views with some clarity. This prevarication is pure silliness on my part and should never have been the barrier I turned it into.

My apologies for that. But let's leave it, at least for now. I don't want it to get in the way again. You came to visit us here once, in this house, and I wondered whether it was before or after the tumour was diagnosed. When I think about it, it can only have been before, or our conversation would have been different from what I recall. A diagnosis that says you don't have long to live is such a watershed in life that it changes everything about your perception of life and death and one's place as a tiny speck of life on a tiny planet in a very large universe.

[That is where I started to complete the letter, the remainder of which was lost. Now comes the Clayton's additions.]

On Tuesday, 21 May 2013, [you] wrote:
Dear Denis (and Tracey),

I just stumbled upon your blog "My Unwelcome Stranger" and read some of your posts.

[Some complimentary comments about the blog omitted here. I'd like to have left them in, but there have to be some limits to ego.]
    Your chosen blog title set me thinking. Pain, suffering and death do accost us as strangers. They are foreigners, interlopers, intruders. But why would we feel that, if we are simply the product of material, chance events that necessarily entail. pain, suffering and death? The survival of the survivors, er, the fittest. But what if we were created for something better? That could account for our feelings about evil and suffering. Anyway, this was just to be a greeting from [my lovely wife] and me here in [you know where].

    We haven't been back to Armidale since we visited you both, some time (years?) ago. It was so good to know that you're both still battling on. May God grant you all needed grace and strength for each day.

    Yer old mate,

    (C=64, Mac, etc.)

I chose that name without much thought, when prompted for a blog title right at the beginning. Sometimes it seems right; most times quite wrong, because it's hard to think of a piece of your own bodily tissue as a stranger, and it's spent a long time with me since I became aware of it. I won't change the name now because it's too much the blog's masthead.

Our lives have gone along different paths, and we each have been living somewhat different philosophies, but my respect for you both has always been based on the fact that you have lived what I regard as the ideals espoused by Jesus as I understand them to be, and that you haven't simply preached the message from the front of the church. Doing means far more than talking.

Each of us bases our understanding of suffering on our experience of life, but in the end, what we do about it in this world is far more important than what we say. I don't worry too much about the moral purpose of suffering because I can see a logical, practical basis for it that you as a trained scientist also understand. It exists and we have only to look about us to see that it is a pervasive characteristic of life on the planet. We have to deal with it, mentally and physically, in ourselves, and treat others as we want to be treated.

I am sure that compassion is the greatest of virtue of humanity, and it can be found in people of all faiths and in those who profess [sometimes vigorously!] no attachment to religion at all. When asked about the afterlife, if I can paraphrase what I take to be his meaning, Confucius said, "Do not concern yourself about that. If you do what benefits humanity in this life, the afterlife will look after itself." 

I'm inclined to agree. I'm not afraid of being dead after my heart stops beating for the first time since it started 66+ years ago. I am concerned about exactly how death will happen and how long it will take in the critical phase, because the course of a brain tumour's progression is entirely unpredictable. And that's where it comes back to compassion.

Sometimes I think you have to be the recipient of compassion and be able to accept it with grace before you can understand what it really means. I still struggle with this, as independence is whittled away daily. But I have no pointless resentments. I know there are billions on this planet who would gladly trade the sort of life I've been fortunate to have for their own precarious existence.

Well, Pete, this letter bears little resemblance to the one that vanished at the touch of a button in the wee small hours today. I don't remember what I said, only how much better it was than this preachy one. **smile**

It's great to have caught up with you again.

Saturday, May 18, 2013

Five-ex, blood, and the zebra twins 2

continued from part 1

   But even more vividly, I remember a strip of gravel between the road surface and the lush grass.

   That's where Bimbo and I made violent contact with ground zero at about a hundred and eighty thousand miles per second, contact mainly in the area of elbows, knees, cheekbones, palms and thighs, but also in way too many exposed spots in between. There was also a grinding noise in my head as it took its share.

clip from original by Watto
   Five-ex stopped dead and started grazing paspalum, having made his point. Bimbo and I were too winded and sore all over our bodies to do anything but lie there on our gravel bed. Both of us were soon in physical shock.

   "Don... don't tell Da... Dad...." whispered Bimbo.

   "Don't... don't tell mine ei... either...." I moaned back.

   "Don't be stupid all your bloody life."  He said it with absolute coherence and far too much conviction for my liking just before he kind-of slept for a little while. But somehow I felt too tired to resent it and I felt strangely sleepy too.

   We'd each managed to bang our heads fairly hard on the gravel. I think I let him go only as we hit the ground, when we burst apart like a sack of spuds. There didn't seem to be a lot of point holding on after that. As he said, neither of us was Sally Moran. My ignoble attempt at self-preservation did no more than take us both out. He probably could have saved himself if I'd let him go before that magical centre of gravity point was overreached at 9 o'clock high.

   No car, bike or pedestrian passed by. It pleased me at the time that there were no witnesses to the incident, except half a dozen surprised cows trimming the paspalum, and cows are good at keeping secrets.

   After some time, not more than a few minutes, we got to our feet. I shambled home on shaky legs while Bimbo crawled into the saddle. He was complaining a lot and I could understand why.

   As usual, my biggest worry was that I would get into trouble when I got home for doing this to myself. I hadn't actually broken any rules concerning horse riding as far as I could recall, but there was bound to be some fine print pointing to an infraction that evaded me for the moment and would be held against me.

   Getting into strife was always my first thought on such occasions, and yet, when I look at my childhood escapades, the number of times I did get into trouble was miniscule. As I crawled up the hill, I expected a parental tongue-lashing at the very least, and feared most whatever punishment would be meted out. A wimp, in other words.

   It was just my guilty conscience, that annoying part of me which, given my manifold sins and wickedness, always had good reason to be working overtime. That's if I got caught. Otherwise, it was entirely untroubled.

   Mum was still at the dairy, milking. There was no-one else at home. So I did what I always did in times of trouble. I went out to the verandah and lay on my bed. This time, I compounded my crimes by getting blood all over the bedspread.

   Oh great. I was going to be lashed with the stockwhip for that, for sure. There was a first time for everything. I closed my eyes, drifting in and out of this peculiar sleep I didn't understand.

   I woke just as Mum arrived home after milking, and came out to the verandah to see where I was. I was missing the ABC Children's Hour on the radio, which was unheard of for me, and I hadn't lit the stove.

   She gasped in horror when she saw me, looking as if I'd been through Arthur Shepherd's hammermill; dazed, bruised, with yards of skin missing and blood all over the covers.

   "I'm sorry about the bed, Mum. Bimbo and I fell off the racehorse and...." I trailed off.

   To my relief and comfort, she was remarkably unconcerned about the bed, or about scolding me for having been on the racehorse. She seemed horrified. I wasn't quite sure why, but then I hadn't seen myself in the mirror, which was just as well. I would have felt ten times worse. I assumed that look was due to the enormity of my misdeeds.

   She rushed for a basin of water and a sterile old towel recently boiled in the copper. The water was cold (I hadn't lit the fire, had I? Another fifty lashes.) but that was a good thing because it felt better cool than it would have if it were hot, even though the cleaning process stung like fire. She was of course also checking for evidence of broken bones, without alarming me by asking my opinion.

   As the wounds were cleaned, it became obvious that pretty much all the damage was superficial, by country folk standards. Not having discovered the egg on the top of my head till next day, she wasn't aware of likely concussion. I'd had tetanus shots recently following that other incident, so no inconvenient trip to Gladstone Hospital was needed.

   Country folk tend to go to Casualty Departments at hospitals only when there's a real emergency, like when an arm or leg is falling off, and only then at the discretion of the injured party. Poor old Bert Riding went only after he couldn't pee for two full days (he rode his horse the fifteen miles in to Gladstone to get to the hospital). But he died within a week, so there are some things you shouldn't leave too long.

   The advantage of my injuries was that I didn't have to go to school for two days, but I enjoyed the break rather less than I expected, being in pain for all of it. Neither did Bimbo go to school, and I expect he didn't enjoy it much either. He also escaped punishment, the consequences of the fall regarded even by his mother, who was pretty tough in the disciplinary area, as ample punishment for the original offence. In our own homes, he and I both adopted the strategy of blaming the other, which we believed to be the best line of defence. In reality, our parents easily reconstructed exactly what happened.

   Turning up at school was a bit of a nightmare for us both. We arrived on the playground and everyone fell about laughing their rotten heads off at the number of bandages we had on arms, legs, and heads – even a foot or two. They dubbed us the zebra twins because our deeply tanned Queensland limbs contrasted sharply with the white of the many dressings and plaster.

   You don't get much sympathy for a bit of gravel rash out in the country, so you learn not to expect it. That's why we're such tough buggers. Hell yeah.

fivex1 | fivex2

Five-ex, blood and the zebra twins

Many of my childhood stories are associated with Bimbo Brown. There are reasons for this that are of no special interest in this blog posting, but I will say that Bimbo and I were related by blood. Sometimes in blood, as you'll see very soon.

   His grandfather was my grandfather's brother on my father's side. That means, by my reckoning (which may be up the creek), that we had one-sixteenth of our genes in common.

   There were times when Bimbo rode his horse to school. It was an ex-racehorse that his father kept to do trackwork with whatever horse he had in training. This one was a bit flighty, but Bimbo had grown up with horses as I had, so he could handle the gelding.

   The school was in a large paddock of about 15 acres (6 hectares), so when he got there he could unsaddle it, hobble it and let it graze all day, ready for the ride home.

   "Hey Bim," I said one day, "what say we doublebank home – as far as your place?" 

   Bimbo looked a bit doubtful, because he was under strict instructions from his father that no other kid was allowed on or near the horse. But I wasn't just any kid, and I'd given him a lift home side-saddle on the bar of my bike many times. I also called in the "We're cousins" card, even though, as I said, we were third-cousins-once-removed, possibly twice, as I'm a bit hazy as to how these things work. 

Razor strop. Source
    He was nevertheless under the threat of the big razor-strop, the one I'd seen many times at his house hanging on a hook behind the kitchen door. Its location was intended as a permanent reminder about restraint in youthful action and for quick deployment if the message failed to get through.

   "Oh, all right then. You'll have to get off before Mum can see us from the front windows."

   With my usual foresight, that hadn't occurred to me, but it had to him, for good reasons, most notably the one behind the chez Brown kitchen door.

   "What's his name?" All his father's racehorses looked the practically same to me.

   "Liquid Amber. In the stable we call him Five-ex."

   I've never seen that written down so it's my spelling, but I got its meaning straight away. Fourex was the national beverage of Queensland, practically the only acceptable one according to local tradition. I'm talking about beer, it goes without saying, brewed in Milton, Brisbane, by Castlemaine-Perkins. In the 1950s you'd be hard-pressed to find anything else with alcohol in it in Queensland, except for Bundy rum which had plenty, brewed in the next sizable town to the south of Gladstone. And the Christmas pudding.

   Five-ex must have been regarded in his racing days as going one better than Fourex beer, which was quite a compliment. Or maybe it was a fervent hope by his connections which Five-ex may or may not have fulfilled.

   Bimbo mounted the horse and manoeuvred it over to the tankstand, so from that platform I could swing on behind him.

   "Just keep your heels out of his flanks. He doesn't like that."

   I don't recall any horses that do, but it didn't hurt to remind me. The gelding was at least three hands taller than my pony and as high as our draught horses.

   Off we went at a brisk walk, over the railway bridge and past the post office. After we got well past the saw-mill, I wanted to move slightly to get into a more comfortable position. Some portions of my anatomy needed a bit of rearranging, if you want the nitty-gritty. I pushed down hard on the saddle behind Bimbo to lift myself a bit higher.

   That turned out to be a mistake. What I didn't know was that there was a loose tack under the saddle, the point of which was exposed when I pushed down firmly on it. Neither Bimbo nor I had the faintest idea it was there.

   Five-ex surely knew, and was aggrieved, not unjustly. He swished his tail, put his ears back, pig-rooted a couple of times and set off at a smart trot. To us it just looked like he had decided to be difficult.

   "Behave yourself, ya bloody old fairy," said Bimbo, yanking harshly on the reins, thereby adding insult to injury. "Settle down."

   That's not the way to settle a horse down when you think about it.

   Being in a saddle at a trot is quite comfortable if you've learnt to art of dealing with it, but riding bareback behind someone else isn't. Nor does it feel all that secure on a cantankerous racehorse. I didn't like the way he'd bucked for what I thought was no good reason, so I grabbed Bimbo round the waist. After all, there's little else to hang on to when you're the passenger double-banking on a horse.

   "Jeez Denny. Don't hold on to me so tight. You're not Sally Moran and neither am I. Ease up!"

   Sally was the prettiest girl in the school but I didn't like the comparison, so I dropped my arms from him altogether and gripped the back rim of the saddle, pushing it down again.

   The horse was now cranky. At the same time as Bimbo was growling at me, Five-Ex felt the sharp sting of the tack for a second time. He took the growl personally, snorted, tossed his head, and broke into a choppy canter. I grabbed Bimbo round the waist again.

   "Dammit Den - I can't fricken breathe. Loosen up!" He broke my grip with a free hand.

   Being a reasonably smart lad, I had made the connection between my pushing down on the saddle and Five-ex's intemperate outbursts. For some unknown reason he didn't like it, and was lengthening his stride. I wasn't holding on to anything with my arms, so I tried to secure myself the only other possible way.

   I dug my heels in hard. Alas, fair into the flanks of the flighty Five-ex.

   I have no knowledge of Five-ex's racing career, but I know one thing for sure. Five-ex, by then careering out of control at full gallop, gave every indication to me that, if he hadn't fulfilled his racing potential, they were girthing up the racing saddle way too far forward. The jock should have been sitting where I was, heels in his flanks the whole way.

   He was very, very fast. Either that, or the rotation of the earth in the opposite direction had suddenly approached the speed of light.

   I was petrified. This was a deeply offended racehorse, being tormented as he saw it by two malicious kids. I grabbed Bimbo again round his stomach. Not even our greatest pro-wrestling hero Killer Kowalski could have broken that grip. At the same time, I drove my bare heels deeper into Five-Ex's flanks.

   By then we were racing at breakneck speed – and I do mean that literally – along the Taragoola Road. I figured that because Bimbo was in the saddle, my best chance of staying alive was his ability to stay there, with me hanging on round his waist.

   There was only self-interest in this. It was the survival instinct deep in a ten year old. If Bimbo knew we were going to share our destinies on a bolting horse, it was strongly in his interests to stay aboard it. But with every stride, we were slipping to port just that bit further.

   And down, down, relentlessly, towards the ground.

   Beside the road, there was a wide strip of green paspalum grass well-bedded in soft clay. I remember it all too clearly as it came closer to my head.

   But even more vividly, I remember a strip of gravel between the road surface and the lush grass.

Go to final part

fivex1 | fivex2

Thursday, May 16, 2013

Please don't say this.

This is something that was said to me at the hospital recently. I may easily have said it myself to a person in my circumstances if I were trying to make them feel better, but being on the other end of it, I found it strangely hard to take. 

Maybe it's just me. Maybe others would appreciate it. I can speak only of my reaction, and if I felt this way, maybe others would too. Let me put it out there anyway.

   At the end of each three week cycle, there's a huge question hanging over whether or not I will be allowed Avastin on the day we rock up for my treatment. This is not a choice I get to make when the needle goes into the red, so to speak – when the test results come in and the amount of protein in the urine is deemed to be dangerously high. 

   It's not even something that's entirely in the hands of my oncologist. At a certain point, he must not authorise more, even if I wanted to have it and he thought it the best option. That is not within his control either.

   So what was said that I found unhelpful?

   "Look, never mind. After all, you've had at least two more years than you could have expected."

   It was said in a cheery way by someone who walked out the door shortly afterwards and would trot happily over to her car to do other things we normally expect in life.

   "Yes," I remember saying. "That's true."

"Always look on the bright side of life"
   How can one disagree? It is true, yet it was all too reminiscent of The Life of Brian with Eric Idle's song, "Always look on the bright side of life (and death)" after he goes off cheerily to be crucified, except that it might have been said by a bystander reminding him he was out for a lovely walk in the sunshine and didn't need to worry about wearing a hat.

   Now if someone had said to me (with certainty), "You're going to have two more years to live, with a satisfactory quality of life, and not make too much nuisance of yourself to those around you," I'd probably have been delighted. It would be something to look forward to.

   But when it's said at the end of a period of grace and with a poor prognosis, it doesn't feel quite the same.

   It's a bit like (not the same as, I grant you) being on a strict diet, but ignoring it and eating a meal of everything you're not supposed to have had. Instead of feeling great about it at the end, you wish very soon afterwards that you'd stuck to the diet. And the last person you would want to be reminded of it by is a fitness instructor with the body of a whippet.

   Or, closer to home, being reminded by the warden as a death-row inmate (an innocent one at that) as your pals chant "Dead man walking", "Hey – what's your problem? You've had more than two years of regular appeals to keep you alive, lucky boy!"

   So, I'm suggesting, don't say it. I'm not sure what you should say, but if you can't think of anything that is guaranteed to cheer up the person getting near end point, then it's my view that it's best to say nothing at all. 

Sunday, May 12, 2013

Between you, me and the bedpost

It was with great sadness that I witnessed the departure of our double bed from this room from where now, at 4.32 am, I start to tap this out on an iPad.

   There would be few who can't appreciate the significance of being forced to swap from a place shared with a loved one, a lover, to a single bed, especially one that seems composed of bars and is overlooked by what appears remarkably like the gallows. But its time has well and truly come, and I've been using it for a few weeks now.

   In my mind, as this bed was parked in the corner of the room patiently waiting for its time to come, I always thought of it as my death bed. As it turns out, it is probably unlikely to be, but in a way, I hope it is. That's another story.

   So here it sits, in the middle of the room, with me in it. Tracey has thought out the best possible arrangement of items around it with great care. She's made the bed feel like something you find in a bedroom and not a hospital ward. The ancient treadle Singer sewing machine bench, so evocative of ours as children, has a cloth over it, and essential items are within arm's reach.

   Only my left hand is capable of picking things up with any confidence on my part, and even that is a tricky operation. My movement is now ever more limited, so I can reach only so far without enormous effort, involving the bed pole above me gripped by my right hand, which still takes one type of strength, and the bed bar to which my left hand clings.

   In other words, critical things must be within what seems easy reach – to you maybe. The width of a fingernail can mean the difference between what I can reach and what I can't.

   Things on the tray are placed precisely.  But I won't talk about that now. This is about the bed.

   I am fortunate to live in a time of hydraulics, powered by electricity. It has three items that can be adjusted. One is the most obvious. The top one-third, the pillow section, can be raised and lowered. Having previously tried to arrange pillows behind me on our double bed to be able to sit up a bit, I can tell you it is very frustrating. It seems right for a brief time, but then I want to move slightly. The arrangement collapses. You get the picture.

   But with this bed, I can get the angle just right if I want to sit up. Not only that, I can change it a little if it becomes uncomfortable, which is inevitable. The human body is made for movement, not to be static for any length of time.

   The second thing that can be varied is the height of the section under my knees.

   I didn't appreciate how vital this is until I spent longer periods in bed lying on my back. My heels start to burn. They're burning now and will be red. I'm not checking – it's too cold. Outside it's zero.

   If I raise the space under my knees, it helps. It doesn't solve it outright because even then the extra blood in the heels causes this discomfort. But by changing the angle frequently, it makes a difference. It will stop sores developing on the heels, I hope.  Certainly there's no evidence of anything like that.

   The whole bed is designed to try to prevent bedsores from developing. I never imagined in my wildest dreams that I would ever be in danger of these.

   Right now, curse, damn and blast it, I have to go to the bathroom. This is a major operation. I have to dismantle my precisely arranged iPad on its Podpad to get it safely back on the tray. (Bless you a thousand times for that wonderful birthday present, Ros and Dave!) But now, I have to get up briefly, which means I have to lower the pillow section and the knee adjuster so the bed is flat, and carefully manoeuvre the iPad on to the tray. You have no idea how heavy an iPad feels with weakened muscles.

   Then I stand up, which is a shaky business. Let's leave out describing all the difficulties in doing that and what comes next. Too bad I have to drink so much water.    
★     ★     ★     ★     ★  

   I'm back. At least in having to get up I was able to pick up my glasses that I left on the walker. I meant to do that before going to bed, but I forgot, and now have been paying the price, even though the walker is less than a metre away. So I've typed everything thus far virtually blind.

IPad with Podpad
   But in reaching the iPad from the tray after the bathroom visit, I have flipped neatly on to the floor my carefully-placed-so-I-thought reading glasses, and it would mean going through the entire getting-up process again to find and retrieve them.

   So I'm typing blind again. I must remember to find them when I get up or I may stand on them. That would be the last straw – almost.

   The third capability of the bed is an adjustment that's becoming increasingly more critical – the up and down movement of the entire bed. It's something I never thought about when I was able bodied. Most of you won't either.

   I need to raise the bed to do little things like turn out the light. Don't laugh. In order to reach the lamp switch, that tiny difference can be critical. I need the bed at a high point when I want to get up, so I can grab the handgrip with my right hand. If the bed is any lower, I can't reach it before a right arm tremor stops me. When I swing around to get up, the height of the bed allows me to steady myself.

   When I need to get my shoes and socks on – another major op – the bed has to be just the right height. I'll spare you the details of achieving that feat (feet?), but in ain't easy.

   Before I get back into the bed I must lower it so my feet are firmly on the floor, and with one good leg to be able to get in rather than dropping off the edge. That way I can push myself far enough into the bed to complete Phase 2.

   With the good foot pushing the useless leg and by hanging from the bedpole with the left hand I can inch the right leg over past the centre point. That combined with the gallows allow me to swing in to that point. Not quite Tarzan but you get the idea. Then I can raise the bed to a good height to read, or to switch off the light.

   Of course, I could call Tracey in to do all this, but every few minutes I'd need something else. She already runs round after me way more than you can imagine unless you're in a similar position – and you carers and care-receivers who are reading this know what it's like. But while I can do things, even with great effort, I should, for obvious reasons. Each day I can do less. I need to do what I can while it's possible.

   Now, I suppose I better put this away as it's nearly 6 am.  I'll try not to drop the iPad on its way to the tray. Here we go....

Later: I spy the glasses down in a position impossible to reach – on the treadle of the sewing machine. But wait. If I lower the bed as far as it can go, and reach across under the Singer table, and stretch out like blazes, I can just...reach. Yeah. Now raise the bed again. Something else achieved. All by myself.

Wednesday, May 8, 2013

My good fortune

Persimmon and Pepperina
At this time last year, this was something I was fairly sure I would never see again. It's our little persimmon tree, about which I wrote with such reverence in June last year. I've been told by friends that their trees this year have no fruit on them at all.

   I guess we must just be lucky. All the rain we had must have come at the right time for them to benefit. I've asked Tracey to wait till she sees the first evidence of a bird peck on one of the fruit before she harvests. That way they'll reach full flavour sun-ripened on the tree.

   But... I will also ask her to pick about a dozen now to ripen on the kitchen window sill. There are flocks of white cockatoos flying over daily and if they decide the time is right, we'll wake one morning to find the tree stripped. That's certainly what happened to the cherries!

   There's no point repeating everything I said when I wrote about them last time, but there's one thing I discovered since then. There are quite a few varieties of persimmon, so what I wrote there doesn't apply to them all.

   Even so, having tasted several varieties, I have to say that none of them come close to the subtle and delightful flavour of the ones from our tree.

   Now is a good time to share with readers of the blog who may not know about it what I called "The perfect Australian Short Story." I posted it at the same time as the one on persimmons last year, for a reason that will become obvious if you read it too. Maybe I was a little over-enthusiastic in my praise, but not all that much. It is a delightful story.

   Finally, let me end with words I quoted from Christopher Hitchens, ones I included in last year's posting but clearly are worth recalling, for obvious reasons. Hitchens ("Hitch") died of cancer in December 2011. I know of few who wrote so powerfully on life and death.
I make preparations both to live and to die every day, but with the emphasis on not dying, and on acting as if I was going to carry on living.
   That is why I will not say anything about this being the last year for the persimmons, although I "make preparations both to live and to die every day". 

The fruit of Armidale winter
All photo credits to Tracey James

Friday, May 3, 2013

Windmills of my mind

Like a clock whose hands are sweeping
Past the minutes on its face
And the world is like an apple
Whirling silently in space
Like the circles that you find
In the windmills of your mind
   At High School studying French, I was very much taken with Alphonse Daudet's Lettres de Mon Moulin (Letters of/from My Windmill).* He lived for some time in a windmill like the one shown below, and wrote these charming essays. For him, it must have been like those writers who decide to live in a lighthouse, only, in his case, much more comfortable, and far less lonely.
Daudet's windmill

   This might seem to be developing into a lazily philosophical story, given the lyrics chosen from Windmills of Your Mind. It's not. It's about real windmills – not the sort Daudet may have lived in, but those you see from the road if you're driving in any rural area of Australia.
   These days, many of those like that above are hulks, no longer operating because electric pumps have taken over. Perhaps the minimal maintenance needed for the farm windmill, which means climbing up a ladder to about ten metres from the ground, may explain it. The convenience of a petrol or electric pump and the expense of replacement parts is also a consideration.
   It's a pity, because windmills like the two old Southern Cross ones on our farm gave us faithful service at no cost, day and night, for all the years of our childhood. To me, they had a mystique and a personality, but what they really were was a triumph of simple, practical engineering and beautiful design.
   There's water under the ground. Near the creeklands, you dig a well, and it fills with crystal-clear water to the height of the water-table below ground.
   You could get that water with a bucket and rope, and then take it to where you need it, but that's tedious and laborious.
   If you have a windmill over the well, everything changes. As the wind turns the blades, water gets sucked up a thin pipe, and a valve forces it out into another pipe to wherever you need it. That's pretty much it.
   It takes only a gentle breeze to pump a small amount at a time along that pipe. Small it may be, but over 24 hours it adds up, and can fill a thousand gallon tank on a windy night.
A windmill at stop position
   Unlike those giant wind turbines, the farm windmill can always face into the wind. It has a sail (or tail), and the particular genius of the design is that it turns the face into the breeze, no matter which direction it comes from.
   It's like the windmill has intelligence; a life and mind of its own. Once I remember vividly the mill for the vegetable garden in the path of a big willy-willy (whirlwind). As the wind swirled about and changed direction, the windmill kept turning to face it, round and round all compass points, as if defending itself from an attacker. It was quite a sight. The blades spun like those of a prop-driven aircraft.
   Being able to pump water day and night is just one attraction. The other is its ability to pump that water very long distances through a pipe, even up a high hill. Water is virtually incompressible, and the operation of the valve means that it has nowhere to go but along that pipe. Up that hill. Into the tank high beside the house, or the diary, just a half litre at a time.
   You cannot imagine the pleasure the sound of that gentle splashing gave us as clean spring water flowed into the tank, particularly in dry or drought weather. The only better sound was rain on our galvanised iron roof.
   But how do you stop a windmill when the tank is overflowing and you're getting a shallow pool around its base?
   Again, the answer is delightfully simple. The sail is hinged, with a spring mechanism, so to stop it you just pull a lever to turn it at a right angle to the wind, and the blades have no breeze to face. It can be locked into position at that angle until it's needed again. The very first illustration shows it facing the wind, ready for action. This one is at rest.
   Bloody brilliant, hey? I reckon it is.
Windmill with sail locked at stop position
   As a small child, I used to climb the ladder welded into the frame and get right up to the little platform where the cowling protected the drive. The spokes on to which the blades are bolted are very long to a little boy – the face was much bigger in diameter than I was tall. I'd stand on the platform and watch as it creaked and groaned and sighed softly, as if it were talking to me. I'd see things in my mind.
   I guess it may have told me that it sensed the movement of the clouds, the animals which came to the large trough filled by the pure water it had pumped, the creatures of the night which visited and the birds that perched on it when it was at rest on still, frosty nights. The tiny, pulsing lamps of the fireflies. Perhaps it felt the presence of the spirits of the Aboriginal people who hunted and fished along the creek two hundred or a thousand years before. The stamping feet stirring corroboree dust to the booming command of the didgeridoo. 

   Maybe even a bunyip or two, vaguely outlined by the flickering glow of the dancing min-min colours above the billabong. And of the gold miners who came to plunder the soil under where it stood, turning the creek into a slurry of mud and murder.

   Something told me about these ghosts and spirits from the past – the past of the land ten metres below me, and my own little existence. 

    But time sweeps the shadows away –
Like a clock whose hands are sweeping
Past the minutes on its face....
Like the circles that you find
In the windmills of your mind.
*If you enjoy reading French, then it's available either online or as a free download.
**There's a great blog posting on assembling one of these windmills. You'll see that when I described a windmill as "simple" technology, it's not quite that easy to erect.

Wednesday, May 1, 2013

My two daughters

On another occasion I wrote about my stepson, Christian, and what a great person he has grown to be in his twenty years of existence. It would be remiss of me not to say something about my own two daughters before this blog comes to a close. 

   I'll let them tell a tiny bit of their stories in just one image and one piece of writing, both connected intimately with me, and you can make of them what you will. 

   Firstly, let me say that I could have chosen as illustrations any number of photos of them growing up, but I haven't. Pictures of other people's kids tend to be just pictures of kids if you don't know them (think of new-born-baby photos, swooned over by parents and doting grandparents, but just another baby to nearly everyone else). 

   The one below was taken on Sylvia's birthday in February 2010, just a few weeks after I had had as much of a brain tumour removed as possible and in was the middle of radiotherapy and chemotherapy in Melbourne. My prognosis by then was a likely eight months, taking all factors into account.

Alice, me, Sylvia. February 2010.

This note was written when Alice was about six, the day after my Ph D graduation ceremony. She just decided it was something that she wanted to write; to get her feelings across to me. It was a typically "Alice" thing to do.

   Alice is the scientist, always the ardent sportsgirl who would be in a game of anything and a keen watcher of any sport on TV.

   On the day she was born in a quiet little Intermediate hospital at Corinda (Brisbane, Queensland), it rained ceaselessly. Joy at the moment of birth was cut short by the fact that she did not cry. She gave a short cough and that was it. Her stomach was swollen and greenish. The doctors huddled, made a decision, and then one came quickly to us with those words no parent wants to hear:

   "There's something wrong with the baby."

   An ambulance was called to rush her and her mother to the Mater Hospital.  If you know Brisbane in the 1970s, you'll be aware that's a long way.

   "What do I do?"

   "If you want to be there, you'll have to drive behind the ambulance."

   I desperately wanted to be there. The rain belted down. My eyes were streaming as well. In the state I was in, no way should I have been driving, but I was determined to go. When the ambulance went through red lights I followed, ten metres behind. Blinding, drumming rain. All I was seeing was the back of the ambulance. I stuck to it like glue. No-one tried to stop me and much more by good luck than good management, I got there in one piece.

   She was operated on later in the day. 

   "Now we see," said the surgeon. "I can't explain why this has happened, but we've drained the fluid from the stomach cavity, checked as thoroughly as we could for any intestinal leaks – we can't detect any – and put her back together again."

   He allowed himself a smile, which was very heartening.

   "This leak must have occurred some time ago and to have healed. Lucky she was four days early or we would have probably had serious infection to contend with. We don't."

   She was placed in a humidicrib in a room with premmy babies, and for a week was fed intravenously. Then, to cut a lengthening story short, she was brought out, and she fed naturally (and ravenously!) the moment she smelt mother's milk. Her first oral food; and it was the first time either parent had touched her.

   "Right, you can take her home then," we were told, to our great surprise and joy. Apart from the usual coughs and colds and normal childhood illnesses like chickenpox, she's not had a day's sickness since.

   One thing she would do as a baby was to play happily in her cot until we got up, regardless of the time. That, I think, is quite remarkable, and certainly wasn't Sylvia's approach to mornings, for she felt that 6.00 am was time for all to be about their business and anyway, where's breakfast?

   Once while playing contentedly in her cot, Alice amused herself by stuffing a large felt eye button of her Raggedy Ann doll up her nose, and the doctor, armed with forceps, located it well up in her sinus area several days later, when she started to sound like, well... as if she had something up her nose. It was a pretty grisly, smelly find and Raggedy Ann remained very one-eyed for the rest of her working life.

   Alice was always a quiet and obedient schoolgirl, although she had her own ways of rebelling at times. A couple of weeks' worth of school sandwiches with a filling she wasn't fond of mysteriously found their way down to the far recesses under her bed, I seem to recall. The fetid smell of some mouldering foodstuff finally gave them away, and the practice promptly ceased.

   She went to Wollongong University to do her science degree, and then to Melbourne to find a job, staying for some time with her much-loved Aunty Kay and Uncle John before moving out on her own when a research job at Melbourne University came up. Jobs, let me say, were not easy to get for new graduates with no experience, but intelligence and persistence pay off in the end.

   Subsequently, she's been a researcher at Monash University and now has an administrative role based on her biological science experience. Her big personal moment in sport was being in the winning team in her division for the National Hockey Championships last year.


Sylvia read this letter to me earlier this year when she and Alice came to visit. She had things she wanted to make known to me. I think it speaks for itself, for it says at least as much about her as it does about me. More, I think. I was much touched by it and I'm happy she let me publish it here.

Dear Dad,

To me, you’re ‘Dad’. When I think about it, I know you are and have been a lot of other things, to other people; teacher, husband, brother, uncle, PHD supervisor, blogger, twit (twitterer?? Ha!), coach, friend, student, patient, step-father, cousin, nephew, colleague, mentor and more. It’s hard for me to think of you as all those things. It’s hard for me to imagine that you’re anyone but ‘Dad’. I guess I still think I’m the centre of your universe – that your most important role, your overriding job is ‘Dad’. That’s really who you are – above and beyond anything else. At least to me.

Until recently, I’d taken for granted that you knew what an amazing Dad you are. I find it hard to grasp that you might not know that. It seems so obvious. I feel inadequate trying to articulate what a great Dad you are. I feel like I’m trying to describe how ‘great’ oxygen is to breath. How ‘fantastic’ it is that our hearts beat, that birds can fly, that rainbows appear, that rain smells so incredible, that waterfalls are so magnificent, that someone’s smile directed at you, can change your whole world. Words like ‘great’, ‘amazing’, ‘fantastic’, ‘wonderful’ all fail miserably at the task of describing you as my Dad. Even the title ‘dad’ seems insufficient. 

But I can’t stand the thought that you don’t know what a great, amazing, fantastic, wonderful Dad you’ve been. It hurts me to think you might not be confident in knowing that; that you might doubt it. So, I’m going to try and put it into inadequate words. And I’m going to resort to clichés and wobbly poetic imagery. I might even have to steal some bad Phil Collins lyrics. I’m sorry. You did teach me better than that but hopefully you’ll get the gist. I’d be happy if you just get a sense of how important you are to me and my big sister and the truly magnificent job you’ve done as our dad.

So it’s hard to find a place to start. I guess the #1 job for a Dad is to just love his daughters; make them feel loved. Make them feel so loved that they don’t even have to think about it, that they never question it, that they always feel secure in that love, no matter what. In this, you would receive a High Distinction. No matter the turmoils and twists life’s journey has sent me on, I have always felt your love, like a safety net, ready to catch me if I fall. (I warned you about the terrible similes and metaphors, didn’t I? They’re coming, thick and fast.) 

In the moments of darkness and despair, when I’ve been terrified, when I’ve felt so lost, when I’ve thought I’d made the wrong decision, when things have fallen through, when I didn’t know my way, when I was 8 and I threw up in my bed, when the HSC assignment that I hadn’t started was due overnight, when my doctor was circling the perfect golfball-shape tucked snuggly inside my brain scan, I’ve always taken comfort in knowing you were there for me; you’re out there, on standby, ready. That all I needed to do was call out; that I could send some night-sky bat signal and you’d come flying down, on your monkey-magic travel cloud, in your superman cape to make things all right again (did I just mix my superhero metaphors?). 

What else? Maybe the next job for a Dad is to accept his daughters just as they are; support them in their pursuits whatever they may be, to let them be free to be whoever they need to be, to let them find themselves. Again, you would graduate with first-class honours in this field. I suspect my path in finding my way may not have appeared at times, particularly straightforward, sensible, practical, reasonable or even rational. I expect that some of my decisions and actions may have concerned you, caused you worry or left you with a sense of befuddlement. Maybe even worse. I imagine all dads must go through that but what you excelled in was making me feel like it was all ok – that I could do all the slightly odd, weird, left-of-field, maybe even slightly embarrassing things. 

Sure, I could make ‘cakes’ out of chicken food and eat them, make a pram instead of a helicopter out of meccano, as a teen I could desperately want an electric car-racing set instead of a make-up kit, I could chop wood and drill things together, I could dye my hair purple, ride off in cars with boys, move out and live with drop-outs, get a tattoo, choose Drama as my major area of study and be an actress, go to gun-toting Central America, pierce my nose, move to another state, be a bit gay…. But you always made me feel like they were my choices to make and you would stand right next to me the whole time and gladly hold my hand and be proud, no matter what you must have been thinking inside. No matter who I was trying to be and what ‘self’ I was trying to figure out, I knew I was and know I always will be, your little girl.

Another important job for a dad is to teach his daughters, pass on pearls of wisdom, lead by example and show them the way (there’s those lyrics I warned you about). Apart from lessons in how to tie a fish hook on right, how to clean spark plugs, how to write a decent essay, how to make a good curry, how to shoot a water-pistol straight in your opponent's eye, how to whack a hockey ball, ride a horse, feed a calf, build a sun room, drive a car, use a siphon effectively, get over electric fences, crack a macadamia nut and so much more, one of the most important lessons that you taught me, Dad, is that life’s too short. Too short for doing a job you don’t love. Too short to save up endlessly for that ‘rainy day’. Too short to be unhappy and dissatisfied. Life’s too short to be angry with others or myself, too short to worry about things over which I have no control, too short to stop doing things that make me happy just because I might worry about being judged. You taught me that life’s too short not to say ‘I love you’ at every opportunity, to jump in the deep end, and to do things that scare me. 

In closing, I know that you might worry that I will be left with only remembering you now, as a patient, as a host for Brian, as a fallen superhero. I need you to know that this final phase makes up only a tiny portion of the amazing Dad that I know and love. My thoughts of you are dominated by images of you on your motor bike coming to pick me up from preschool, of standing on the rocks fishing as waves slammed all around you, of you posing in front of various landmarks in India, America and Europe, of mowing our enormous lawn in tiny shorts and a huge hat, of your proud smile as someone congratulated me on my performance in a play, of you singing “I like traffic lights” badly in the car, of your soft voice delivering lectures on tape, your look of concentration as you flicked the bat in French cricket, you working away deep into the night and early hours of the morning on the computer, your voice on the phone, calling me from China on my birthday, your look of concern as the Jets played their hardest in the Grand Final, patiently teaching us crib and yahtzee, you in your gown at my graduation, of you soothingly reading aloud to me by my bedside in hospital, and your beaming face when you stand next to Tracey. 

I thought everyone had a dad like you – that that’s what dads were supposed to be like and that’s just what dads did. I didn’t realise I was so lucky. It’s taken me a while to recognise just how fortunate Alice and I are, to have a dad like you. You have to know what a special dad you are, and that we love you so much. For ever and always, Daddyo, you’re the world’s greatest dad. Please know that.

From your No. 1 Daddy’s little girl.

   There they are. You can find a dramatic piece of Sylvia's life elsewhere, so no need to say anything about that here. 

   Neither of my No. 1 "girls" nor Christian put their parents through the hell some teenagers inflict on theirs. For that, we can feel very fortunate, and very pleased.