|A Clockwork Me|
THIS PART'S IMPORTANT!
For quick medical updates, click this WHAT'S NEW! link, or the one in the right side column under 'Additional Information.'
Latest WHAT'S NEW! update: Sunday, 19 May 2013 10:25 AM.
If you read this, it saves me a lot of effort and precious time in emails.
Latest WHAT'S NEW! update: Sunday, 19 May 2013 10:25 AM.
If you read this, it saves me a lot of effort and precious time in emails.
Thursday, June 30, 2011
One of the true miracles in this world is how many kids, boys in particular, go right through life with two working eyes.
Without the full complement of eyes, you don’t have true stereoscopic vision, you can’t perceive depth accurately, and you have to make quite a few adjustments, especially if you had two functioning eyes in the first place and were in the habit of using them in perfect synchronicity as a pair – as natural selection has decreed.
That was, before you ran into a rose bush or barbed wire fence, or lost one of them in a heap of ways boys tend to be good at discovering without the slightest intention of doing so. These may involve air rifles or fireworks or shangeyes (slingshots).... there’s really no limit to the inventive ways boys try to divest themselves of one or more of their eyes.
It is my great fortune in life to be able to look at this screen with one spare eye. That is to say, I still have them both, but it wasn’t for the want of trying to dispense with at least one of them as surplus to requirements at various times in my life.
Let me count the ways. Four major ones at least is my rough count, and they took place during adventures where I could have got rid of one eye or the other without much difficulty; and many minor ones where nature stepped in by dint of the ‘involuntary response’ principle. You save your eye by averting it a millisecond before you even know you are about to have it wrecked in its socket by one means or another.
You know what I mean.
The first of these four I have already mentioned on this blog, together with the amusing consequence, but just to recap the incident itself, the policeman’s son threw a rock at me when, I’m pretty sure I recall now, I laughed at him for having a girl’s name.
Well he did. He was Robin Sugars and to the ear, if not the eye, that was a girly name. I mean, go down the list right now of AFL OR NRL football players in every team – how many Robins do you see? Even in this supposedly gender neutral age, not a lot of them, are there? Nor Evelyns, or Vivians, or Karols. Even Alex is a bit suss, you can’t deny it.
I rest my case. But, this statistical analysis would have meant nothing to Robin Sugars. In fury, he determined to smote mine eye that failed to distinguish a ‘y’ from an ‘i’, and attempted a biblical retaliation in taking my eye for his lost ‘i’, if you get my meaning.
I can’t really blame you if you don’t. Not everyone is an Old Testament scholar, and my puns there were a bit ambitious, I admit.
The stone, a commendable sized gooley, struck full force under my right eye, with the consequences I have related before. Luckily, he had picked up and hurled what was probably the roundest stone in the gravel by the side of the road, so the result was nothing more than an impressive abrasion, a large bruise under the eye and a black eye socket that was the admiration of my mates for as long as it lasted.
Strike Two was much more dramatic. I should really save it for last, but then the chronology would be out, and somehow I need to remember these assaults on my eye in order. It involved a train, a railway line (not surprisingly) and someone in a hurry. I’ll tell you about that next time, but I can feel, even now, the almost unbearable tension this has created in you.
It’s OK. Remember, I still have both eyes. Don’t fret now. Next time I will reveal all.(continued)
Wednesday, June 29, 2011
Vale Mavis Watson, who passed away 27 June, 2011.
My name is Denis Wright, and Aunty Mavis was my mother’s sister. These few words are on my own behalf, though I know they will resonate with my sisters and my cousins, the Bennets, because we have had many experiences of Aunty Mavis through life shared with Michele, Pam, Peter and their families.
When I was 16, I came to Brisbane as a teacher trainee and stayed for two years with my cousins, the Watsons, at 376 South Pine Rd, Enoggera. My mother had asked Aunty Mavis if she would look after me while I was at Teacher’s College.
It was a huge ask. She was being requested to add a sixth member to her family of three growing children, to find space in their house for him and look after his washing and ironing and meals. For two whole years.
Not only that, there was an unspoken responsibility placed upon her between sisters to guide me as much as possible for those two watershed years of my life – the transition from adolescence to adulthood, from my farm background in a tiny country township to the relative sophistication of city life. That was probably not what Aunty Mavis would have bargained on.
Many of you will smile at the thought of early 1960s Brisbane as being described as sophisticated, but it surely was for a teenager who had never in his life bought a tram ticket, and regarded three cars in a line as a traffic jam.
But Aunty Mavis took on the role with wonderfully good grace. I was thinking of the adjectives that would best describe her, from my point of view, as a member of her household. I’m simply going to put these words before you, as they are not only self-explanatory but they say it all for me.
She was, to me, all of these:
warm, gentle, cheery, generous of spirit, patient, loving, clever, determined, and diplomatic.
I imagine now this task of caring for me was not easy for her. She wasn’t my mother, yet that was pretty much the role thrust upon her. That was where her quiet determination and diplomacy came in!
Mostly I remember her beautiful smile. Oh, and one other thing, last but by no means least for a growing boy – she was a wonderful cook, and her Lemon Delicious dessert was one of the culinary delights of the age. I declare that she would have had the judges of Masterchef bowing at her feet after being presented with that dish alone.
Lastly, she gave me something that changed my life. She urged me to study at the University of Queensland, doing evening courses towards my degree while at Teacher’s College. If she had not done that and not given me a base from which to study, I may not have stayed the distance. She was more pivotal than I could have imagined in giving me the career and the life I have had ever since.
Her influence on me was subtly powerful and she meant a great deal to me. I feel her passing keenly and I thank her for everything she did for me. I’m very glad I’ve had the opportunity to do it publicly here today.
Tuesday, 28 June 2011
(Special thanks to Aunty Mavis's son, Peter Watson, for reading this speech on my behalf.)
Tuesday, June 28, 2011
A remarkable thing happened this morning. Well, it was amazing to me, but maybe quite familiar to you. Tell me if it is and then I’ll try to work out why I have never heard it before.
We’ve all heard of the expression, ‘dawn chorus’ to describe the early morning calls of the birds declaring their territory to the world in song.
When I woke, I could hear the random multiplicity of bird calls – I can’t tell you them all, but of course there were the usual suspects such as magpies, butcherbirds, currawongs, wrens, a wagtail or two, and kookaburras, randomly puncturing the silence with their lively calls. Others I can’t name were there as well. It's a comforting sound, mainly because it reminds me I'm alive. Believe me, there's nothing quite so comforting as that.
I was enjoying this rather gentle cacophony when everything fell silent, and to my surprise, with the precision and timing of a church choir, the air was filled with a genuine dawn chorus. There was a unique order to the birdcalls, even to one little bird I can’t name, as I’ve never heard it before amongst the others. It ended the round with a flat single sound, just one low note on its own.
Surely that was just a chance occurrence, I thought, but no. There would be a short silence and a magpie or butcherbird would lead the chorus for another round. The kookaburras kept quiet, which was good because they would have been much too raucous, like a rude drum solo right in the middle of a Bach fugue.
Each bird came in at the same place every time. Once again it ended with that plain, pure note by some unknown little participant in the chorus.
This must have gone on for five minutes or so, the same piece repeated flawlessly, and then silence reigned again, almost eerily. The normal random cries of the birds then began once more.
The mysterious conductor had disappeared. The world of sound in the trees nearby was as it always was. The kookaburras thought the whole thing a great joke and let it be known to the world.
I looked out. There was a very heavy fog. I don’t know if this made any difference to the way the birds behaved, but I have woken to what I imagined was the ‘dawn chorus’ just about every day of my life.
It wasn’t. The real dawn chorus was something else entirely. I wonder if I’ll ever hear it again?
Life, you see, is always full of surprises, and sometimes they come from the most unexpected quarter. You already knew about this treetop chorus? Maybe I don’t want to know that you did!
Sunday, June 26, 2011
There’s a Compass program on ABC TV tonight that looks interesting. Maybe I’ll be disappointed, but I hope not.
Look at that – I just made that appear to be negative. Yet the program’s this:
Broadcasting 10.00 pm on ABC1 (Channel 2)
COMPASS: ACCENTUATE THE POSITIVE
Explores whether a school's controversial experiment will provide a way forward to help future generations of teenagers grow up to become happier, more resilient and compassionate human beings.
I could have put what I said in my opening paragraph much more positively.
But this is what we do. We can easily fall into the trap of negativity and spread it like a cloud of doom.
I remember in my first year of teaching, I had a brother and sister in the same Grade 4 class. They were twins.
In my defence for what I’m going to tell you, I was just 18 years old, in my very first few weeks of being a full-time teacher.
I was also cranky with the little girl because it seemed obvious to me that she was making less effort at a particular task than she should have, while her brother was doing an excellent job.
So, be gentle with me.
I said to her, ‘Come on now! You’re not doing this half as well as your brother!’
Yes, yes, I know, I know, I KNOW!! It was the last thing I should have said, and I knew that the second after it came out of my mouth. I looked at her face and it told me so. Instead of spurring her on through competition, the effect was the opposite. The tears welled up in her eyes and she looked as if I’d slapped her face. I knew in an instant that this girl, who, it must be said, was not as smart as her brother, had spent her life being compared with him negatively, and here was her teacher saying exactly the same thing as everyone else in her life.
For her, it was a betrayal, and we both knew it. If I could have taken the words back by biting off the tip of my tongue, I reckon I would have done it. Hmmm – well, just about....
I couldn’t take it back. Karma doesn't work that way. It's a process that can only go forward because there's no UNDO or REWIND button. Yet at the same time I didn’t want to let her feel that tears were the way to go to get special favour in comparisons with her brother. I never compared them in any way again.
But I did make sure that when she achieved at some task when trying to perform well, she got plenty of praise and assurance, and before long, she showed no sign of the crippling effect that the constant unfavourable comparison had made in her life. Without her being conscious of it, I also gave her strategies for dealing with possible unfair comparisons at home, by focussing on her strengths in areas where brother and sister could not possibly compete.
Oddly enough, this made me aware that in assessing undergraduate essays as a university lecturer, especially for students in first year, I should be careful not to shatter a student’s confidence in comments I wrote on their essays. Remembering my first feeble attempt at an essay and Devahuti’s compassion, I always looked for something positive, however small, to begin my comments, so that I could write on the problem areas while they could bask in that ray of sunshine, however feeble it might be.
I always said that a student was entitled to make one mistake, even if it was a doozy, but was not entitled to repeat it once it was pointed out to them clearly. God knows we all make mistakes, and continue to do so throughout life. (Well, they SEEM to be mistakes anyway, but they sometimes teach us very positive lessons. Let's not talk of matters of right and wrong just now....)
I wonder if that’s the approach on the ABC program tonight? Let’s see.
Saturday, June 25, 2011
Having blathered on in my previous posting about how important this document is for someone who has been told by a doctor treating them that their ‘life expectancy has been significantly reduced’ by some condition (or, to put it bluntly, they’ve been told they are likely to die before too long), let me explain just a couple of things about it.
Any adult can create an Advance Care Directive that suits them, and a document for this purpose can take many forms. It's a good idea to do so, no matter who you are or how old. Who knows when we might suddenly find ourselves in such a situation? But what is below is directed specifically at people in the category of 'terminally ill', as it will suit their circumstances better than a broader Advance Care Directive available to anyone.
1. As you see from what I said in the first sentence, a professional is involved before you start. You can’t decide the Advance Care Directive completely on your own if you want it to be a relatively simple process. You need a diagnosis from your GP or other treating doctors that confirms the nature of your illness.
Only then can you make an Advance Care Directive that is as legally valid and uncomplicated as it can be for you. The last people you want to be deciding your fate are lawyers, trying to make sense of a document you've concocted!
2. In the document, you make known your wishes about a number of things. In fact, it’s stronger than that. You direct medical staff to respect these wishes.
The details will be on the form you get, but they deal with things such as how you want resuscitation to be handled in an emergency, artificial feeding or administration of fluids.
3. You can make a direction about when the time comes that you are getting near to death. Let’s not mince words. You need to think about exactly what palliative treatment you want. Put simply, palliative care treats pain and/or makes you as comfortable as possible, but doesn’t aim at treating your underlying condition because that’s probably past being treated. It is intended to make things better for you as the end approaches.
Do you want to be kept alive for as long as possible, no matter what? Do you want nature to take its course, as far as possible? Exactly what lawful medical interference, if any, would you like or expect while you are dying?
These are serious questions and I feel sure they should be discussed with someone else – e.g., your GP or carer - because what you decide also affects what they do at the time and thus puts responsibility for you and your treatment squarely on their shoulders.
In that sense, even though it’s a critical time for you, this is one time when it really is not just about you. They are going to have to live with your decisions and what you ask of them, and that is not likely to be easy for them, no matter what. That's why clarity is needed; why this document is so vital.
That’s about it, really. Remember, this is just me talking. There are real experts in palliative care out there, and it would be wise to seek their guidance while you still have your rational faculties and you’ve accepted that you do need to make these decisions at the right time.
That time is NOT when you’re lying unconscious at the final stages of your illness in Emergency or hooked up to a battery of life-prolonging devices. You need to have a say in this. Don’t leave it to others if it can be avoided – it’s not fair on you or them.
NB You can get similar forms online to the one we have, but when we investigated all those, we felt they were unnecessarily long and complicated. The one we used is plain, easy to read and understand, and seems to cover everything adequately from a legal point of view.
Let me be clear that I’m talking only of Australia here. Other countries have different laws, so if you think it’s something you want to make a decision about and you live elsewhere in the world, you’ll need to be sure how it’s done there. One thing I do know is that laws on this vary widely, not only from country to country, but often from state to state within a country. I can't even be certain that what I said applies uniformly in all states of Australia.
There seems to be a variation on Murphy's Law that almost never fails. Write down how everything is going along just great, even say you're not going to tempt fate by saying it, and ouch! kick right up the backside even though you're sitting down.
It's no drama really but I was writing about how good and energetic I was feeling this morning and how many writing projects I had on the go, even listing them, and several other things you were dying to know, and the dreaded lockup of the computer occurred, and yes, I was writing in the one space where I couldn't recover any of it. I couldn't even take a screenshot with which I could just type it out again with this one good hand.
Oh well - it's a test of equanimity and grace, isn't it? This time I am typing into a 'safe space' and unless that OTHER version of Murphy's Law occurs, where everything you do is negated by some malicious demon with a probability of .000000001 occurring, then....... STOP! Let's just start again or it could happen.
I was saying how the return of cloudy mornings has taken the freezing chill off, and I feel more active and alert, with all systems go. I was bewailing the fact that my circulation system seems to have slowed down to the point where on a chilly winter morning here in the study, I feel like I would be better to be a lizard or snake that should be lying out on a warm rock out of the wind, drawing in heat and energy from the sun to really get me going.
These are the things I am writing about. Come hell or high water, you are going to be told anyway, just to prove my mind is still active:
The second and final part of what I was writing on the Advanced Care DirectiveThe scars around my eyesThe milking machines and the wonderful diesel engineGap yearMore on truth, illusion and realityBoat peopleAnd another I now can't recall, dammit.
I was also noting how the days are actually lengthening from now on, so that in theory at least we are heading for summer, even though here in Armidale we have a good three months of winter weather to go....
See? It's all a jumbled mess now! But you get the point. Everything's going OK, in this week that's usually the best one of the three-week cycle.
Now, back to sorting out the big computer, warming my feet and writing about the Advanced Care Directive. This laptop's fine, but I am sadly missing all my typing shortcuts that are only on the desktop computer, a different breed altogether.
Watch this space!
Friday, June 24, 2011
Yesterday I signed what was probably the most important document of my life, and it has given me enormous comfort and relief to have done so. If I were being dramatic, I’d say it’s the most important document of my death, except perhaps for my Will.
But this has nothing to do with a Will. That, in my case, was dealt with long ago, and if you haven’t made your Will, then you should. It will save a lot of people plenty of trouble if you do. My father died intestate; i.e., not having made a Will, and this had a tremendous cost for my mother I won’t go into here.
The document I’m referring to now is called by various names, but in the end they amount to the same thing. The one I have filled in and signed is called an Advance Care Directive. It is designed specifically for people who are generally regarded as terminally ill.
Even if you are not in this fairly exclusive club of ours (hey, we don’t let just anyone in!), the document contains things worth thinking about, especially if you may be placed in the position of being a carer for someone likely to die soon because of their medical condition.
Don’t be spooked by this. It’s too important for pussy-footing about. Practically no-one knows just when they will die, and the precise manner of their death, even if they think they do. But some of us have the privilege of knowing how, when and why we might expect to die. Others have the burden of knowing this about someone they care for. That burden can be made a lot lighter for them, and a comfort to you, through an Advance Care Directive, also known as a Living Will.
If you’re suffering from an illness that your doctor tells you that you can expect will significantly reduce your life expectancy, you need to make an Advance Care Directive, and that’s what this about.
I‘m talking now directly to the person who is terminally ill, but if you‘re caring for someone in this situation, then adapt my language to suit. I’m being blunt because there are some who don’t accept that they could die soon, and they need a wake-up call to deal with this.
The devil, as they say, is in the detail, and it’s the detail that may decide whether or not your death is as comfortable as you would want it to be. Making decisions about some things while you are able to do so will save you from a fate that may be worse than death. Literally – I’m not being melodramatic here.
For some of you, certain decisions absolutely critical to the way you will die are often left too late for you to have a say in them. They’re left till you can’t make them yourself, and that means someone else has to make them for you – if the law permits. It turns out that it can be a very big 'if'.
That’s OK, you might say – my parent, spouse/partner/children will know what I would want and make the right decision. Or my doctor will know. I’ve made it pretty clear.
It’s just not that simple. They may not know some very vital things that only you do. Even if they do know these, if they don't have them down in black and white, signed by your doctor and certified by a JP, you could be trapped in a limbo that is terrible not only for you but for your family, whose hands are now tied because they don’t have the legal right to do what they are pretty sure you would want.
Impossible, you might say. No, you’re wrong. It can happen, has happened and will continue to happen without an Advance Care Directive.
Now that I’ve cleared the deck, I’ll write in a second (and final) part what the critical bits are and you'll quickly see why you simply can’t afford to ignore them.
Wednesday, June 22, 2011
The last thing I expected to write about today!
It’s cold here today. Clear, not THAT windy, but a day right in the Armidale winter mode for the shortest day of the year. I have taken to hijacking the heat-wheat, once the province only of les femmes when they need its comfort most, and am using it for mine.
It’s one of those triptych type heat-wheats and wonderfully cheering. I can place it on my lap and put my right hand under it while typing with my left (the one that works), together with warming unmentionable parts of my body. Or I can lay it across my Ugg Boots and keep my feet warm. (No, spell-checker, not Egg Boots!) My circulation has slowed to a crawl, it seems. I need an auxiliary pump plumbed into my system, I think, powered by AA batteries.
I might be on to something here. I’m going to be very peeved if someone comes up with one after reading this and makes a fortune!
But I don’t have such a pump, so the heat-wheat lies across the top of my legs. You know what I mean, don’t you? You can make them out of raw wheat grain or rice sewed into little bags, and heat them in the microwave oven or a regular stove. I imagine if you had a cake stand you could also heat them above a slow combustion fire like ours. (I put that last bit in there for my microwave hating readers - you know who you are....)
It reminds me a bit of the very funny description in the eighteenth century novel, Tristram Shandy, where the hot chestnut drops into the unbuttoned fly of Phutatorius, a learned gentleman sitting at his dinner table. But things with the heat-wheat don’t get as serious as they do with him and the chestnut; just to the pleasantly warm stage. Let me move on.
I think then of the Kashmiris we saw when up there in the Himalayas in mid-winter, while staying on a houseboat in Dal Lake, Srinagar. That was in the days thirty years ago when it was possible to go to Kashmir fairly freely. I couldn’t work out at first why every single woman in the streets of Srinagar appeared to be pregnant. Then I noticed that it wasn’t just the women; the men did as well. They all seemed to have their hands inside their coats, constantly fiddling with something around their navels. It was a bit odd.
I won’t keep you guessing what it was about if you don’t already know, because if you don’t know, then you won’t guess. Every Kashmiri had their own personal central heating under that coat – or phiran as the coat was called. Inside the cloak, each person carried a little clay pot in which charcoal was burning, and they were turning these coals over constantly inside the phiran with a stick or mini-tongs. The loose coat allowed the warmth to circulate quite well around the torso.
They made the invisible turning of the coals into an art form, all done by feel. The only problem was that if the person tripped or was knocked over, then serious burns could result, as it’s not that easy to clear the decks, so to speak, if such a scattering of burning charcoal happens. The phiran is not designed to be ripped off in a flash on a Srinagar mid-winter day.
Still, it accounted for what I took to be great politeness towards each other while passing in the street. They were first and foremost saving themselves from second and third degree burns if a collision should occur. It could happen - and all too frequently did. Maybe on that account alone the pot of coals could be a great deterrent to violence!
OK, now back to writing the story I started out to write. Hell it’s cold! Where’s my phiran? No, on second thoughts, I’m abandoning you all completely and going to the lounge, where the beautiful fire is. You can amuse yourselves! Toodlepip.
While I’m writing, I thought you might like to see five recent quotes that struck me. The last two of these I will come back to when I go on with my Illusion, Truth and Reality series. I’m sure you’ll realise why immediately.
Failure is only the opportunity to begin again more intelligently. Benjamin Disraeli
Loving someone means you should be ready to experience heartache and happiness at the same time.
The amount of fear in your life shows the extent to which you are in agreement with the enemy of your soul.
Uttering a word is like striking a note on the keyboard of the imagination. Ludwig Wittgenstein
Our truest response to the irrationality of the world is to paint or sing or write, for only in such response do we find truth. Madeline L'Engle
Monday, June 20, 2011
This time I’ll get clinical, unlike in the posting that was supposed to be this one. This is all about me and a consultation with the Oncologist after three months, so you can safely ignore it if that’s of no great interest to you. I know it is to family and close friends, and that’s why it’s here.
If I prepare a written summary for Nick, it saves time and we stay right on the point, which we all appreciate.
Here it is.
3 month history
No infections such as flu.
Most significant feature: the return of stronger seizures
Now occurring during sleep periods rather than waking. Almost always in the past they occurred when I was awake.
Seizures earlier this year were mild and usually stopped quickly. These new seizures are now more frequent, affect the right side as a whole and are as strong as those last year, but I recover from them quicker than I did then.
It began with two seizures in the early hours of 3 May. There have been three seizures this month: 5, 7 and 17 June. No doubt this indicates heightened tumour activity.
In circulatory efficiency (hard to keep warm in cold weather!)
General in brain area and specific to tumour – generally mild but sporadically persistent
Have required only minor medication
Oral medications have not changed over the period, except for 30 mg/week extra Dilantin.
Clexane use has been suspended since 8 June (Opinion on this?)
Periods of sleep increasing - one each night 6 hrs and one daytime 3+ hrs
Lucidity: good (but get 2nd opinion from Tracey!)
Some short term memory loss and shortening concentration span
Decision-making slow. Can be indecisive.
Sleep usually good
Body functions normal
Immune system remains strong
Right hand use improved with increased strength but poor for fine control
Fruit and vegetables, fish, chicken, with minimal processed sugar
Weight a problem but increasing exercise subject to seizure activity.
Here’s a summary of the parts of the discussion that matter.
We can add a third anti-seizure drug instead of increasing the dosage of current two. We will do this if necessary but not before we are fairly sure that on balance it is the way to go.
We will resume Clexane at a maintenance dosage and not as a treatment dosage. This means dropping from 120 ml daily to 40 ml. The idea is to try to keep clotting at bay (without overdoing the treatment) so that it does not become more of a factor in the equation than it now is.
This seems a good compromise to me even though it remains a daily inconvenience. At least my stomach has had two weeks to recover!
As he said, he is very pleased to see me (noting that I am probably even more pleased to be there!) He was interested to know that I had prepared it alone. I told him that it was so hot off the press that Tracey had barely time to read it, and that I might even have to defend parts of it right there! I guess it gives him an indication of my state of mind.
So, we all cooperate in optimising the things that provide good quality of life and try to keep the nasties at bay for as long as possible.
It’s a sensible pathway between extremes, and that remains my philosophy. As long as there are wildcards in the pack, and there certainly are, going to the outer edges is a risk I’m not inclined to take.
We drove to the hospital this afternoon for my 2.45 PM appointment with my oncologist, Dr Nick Pavlakis. He has a formidable reputation in his field. As mentioned here, one of the most heart-warming stories about his involvement in brain tumour research and treatment comes from 2003, but it's timeless.
I'm very lucky to have my treatment supervised by him. He visits Armidale from Sydney regularly and takes on patients like me, even though the demands on his time and patience are relentless.
We rang from home to check on how his appointments were going. One of the advantages of a small town is that the hospital is less than five minutes away. We can park in the street (no parking meters!) and walk 30 metres straight into the waiting room. I shudder to think of those long drives through traffic with Tracey, Alice or Sylvia in Melbourne. There, it took longer to find a parking spot when we finally got there and walk to the Peter Mac Cancer Institute than to leave this room and be on time for the appointment here in Armidale.
The receptionist tells us things are going pretty much to schedule, so at 2.40 PM we get in the car, and there we are, right on time.
As we’re waiting, I saw a poster and wondered why it was there. The website URL hit me first, and it seemed to be one to help people who became redundant and lost their jobs.
I suppose there’s no reason why people like that shouldn’t have a helpful website, but the picture above the web address was confusing. It was a black and white photo of various people standing around, except that one guy has bright red undershorts on.
Then I read the message (finally!) and looked again at the URL, and the penny dropped. <www.redundies.com.au> This isn’t about people made redundant (nicknamed ‘redundies’) at all. Of course! Red Undies. But you already guessed that in much shorter time than it took me to figure it out.
Don’t bother going to the www.redundies.com.au website because it is now ‘parked’, probably till 2012. The idea is that if you bought a pair of red undies from Lowes during a week last month, profits were donated to the Continence Foundation of Australia.
I have to confess I wasn’t aware of the campaign, nor even of the existence of the benefitting organisation. As usual, it’s usually not on our radar if we aren’t personally affected in some ways. Incontinence is something jokes are made about, but it usually remains in the realm of aged people’s problems.
It’s not. For those suffering from kidney problems, including kidney cancer, it can become an issue, and that’s why the poster was in the Oncology waiting room. I feel glad I’m not suffering from anything that puts me in that category, but there are many who do, and it’s not funny at all. But it’s so taboo that the poster was right to use the clever slogan, ‘It’s Time for Some Decent Exposure’. I wish for its sake that it had more.
So, that was how I spent the waiting time, and this posting was supposed to be about our discussions with Nick Pavlakis.
I’ll write about that now. If you’d have told me this morning I would be writing about continence (which puts a positive spin on viewing the condition), I’d have been extremely surprised, but that’s what I get for reading posters in doctors’ surgeries.... As mentioned, it’s worth going here to read about it.
And, now I’ll start writing about what I was going to, but there are times when other people’s issues become much more important than those of an individual.
Sunday, June 19, 2011
Some of you are old enough to remember the first time ‘bloody’ was used on Australian radio. I could stand correction on this, but I think it was a Saturday night reading of the Nino Culotta tale, They're a Weird Mob. It was a story of migrants first experiencing Australia in the 1950s. As it turns out, Nino Culotta didn’t exist, as it was a pseudonym used by John O’Grady to give authenticity to the novel, but let me not get side-tracked immediately about its positive effect on traditional Australian society in understanding the post-war migrant experience.
Since then, all the other English language swear words have been introduced to live radio and TV, following hard on the heels of exposure in novels and movies. I mean, ALL. Some media are still coy about allowing them, and that strange paradox in US culture often has them bleeped out so many times in a single sentence that you have little idea exactly what they’re saying. Not that you can’t guess in most cases....
There are now no swear-words that can’t be heard on TV or on the net, on FaceBook, blogs or Twitter, or in news articles. The school playground is full of them; kids aged from 5 to 18. The main street echoes with them, especially from people emerging from various places of conviviality and refreshment. What would stand-up comedians these days do without these words?
The only limits, in fact, are self or family imposed, except in Victoria where they’re going to try to police it. I won’t say ‘good luck with that one’ because I think it’s a terrible stick to give any police officer to beat someone about the head with, (only metaphorically speaking, I hope). For example, what’s blasphemy for one person is simply satisfying cussing for another.
But here’s what I find interesting. Unless you’ve been living in a sheltered workshop, the limit of shockability of all swear words has been reached. People will go on and on using the ‘outrageous’ ones, but already they’ve become tedious. The more they’re used, the less literary or artistic punch they have.
Look, I ain’t against swearing per se. God knows I’ve used the entire range on offer under some circumstances, and I do believe in the fundamental truth that the bloke who swore at his neighbour instead of smashing his head with a club was indeed one of the founders of civilisation. If you’re the ****** ****** who cuts in on us and nearly ******-well causes a ****** car acci******dent, I’m not beyond a bit of unimaginative but highly gratifying expletive in preference to beating you up. Or getting beaten up by you, as the case may be. More likely the latter these days.
All I am saying is that human beings are going to have to get genuinely creative again in writing, film-making, and communicating with each other. No-one can invent a new swear word. Shock comes from an attack on the traditionally sacred or an indulgence in the sincerely profane, one way or the other.
It’s all been done as far as cussing is concerned. The swear words now in vogue can be reported creatively, but it’s rapidly getting harder and harder for any self-respecting writer to use them artistically. Their mind-numbing repetitiveness must now leave the door wide open to invoking new imagination and invention in communication. Let's see who the truly creative people are going to be.
Time to stop being lazy ****s FFS! :)
Saturday, June 18, 2011
It’s Saturday, 7.30 AM, and it feels to me like some people must do on a Monday as they lie in bed, not wanting to get up and face the work-week. The bed is deliciously warm and cosy.
I don’t want to get up either, but I must. I have medications that need to be taken. I’m reminded of this by a not-so-dull pain, right where as much as possible of the tumour was excised from my brain on 17 December 2009. That’s not good. Some days it's there and others not.
That’s right. 563 days have gone since everything changed. I waken to each one not knowing what challenge may be ahead. There’s a more general ache across my whole brain. I know that if I exercise a little and eat something, this ache will probably disappear, for a while at least. The toxins will be dispersed by physical activity. For now.
Two days ago, a friend of ours died from stomach cancer, after a long fight. She had been cared for with great self-sacrifice by another friend, herself a kidney cancer survivor who had just looked after two other cancer patients one after the other till their deaths. One of them had ovarian cancer; the other, prostate cancer. Coming out of Oncology at the hospital after my treatment, we bumped into a young friend. She told us that her boyfriend’s father had just been diagnosed with pancreatic cancer. She looked shell-shocked. I didn't know it at the time, but my brother-in-law Jimi was at the bedside of a former band member and great entertainer Josie Jason. She succumbed to throat cancer on Wednesday. Three friends visited within days of each other; the brother of one is in chemotherapy, the brother-in-law of another as well, and the third, his wife, a survivor. I had just been communicating with another friend, also a breast cancer survivor.
Happily, there are long-term survivors. We tend not to hear of them because recovery fades quickly into ‘normalcy’ for just about everyone else. They don’t go round shouting it to the rooftops, though I think they have a right to. But as I write this, I learn of another friend who’s just had surgery and is awaiting the results of a biopsy.
Still unwilling to leave my warm bed, I am pleased that this time I got through the night with no seizure. At one stage my arm had that discomfort that often signals an attack, but I got up, stretched and moved, drank water, and the feeling went away.
So now I start a mini-exercise routine as the hands of the clock swing up towards 8 am. I do things in 20s, though I gradually built up to that number. It starts right in the bed. I stretch upwards with my hands and do 20 sit-ups, but I weaken progressively as I do each one. If it’s not good enough, it has to be repeated.
I stretch and twist arms and hands. I do leg-raising alternately, in 20s. Never stop before 20. It’s weakness.
There’s a method in my madness. By then I feel warm enough and awake enough to go to the bathroom for ablutions. The bathroom is cold, as the laundry it adjoins is poorly sealed and there’s a nasty wing forcing sub-zero temperature air into the bathroom.
I need to be warm before going in there or my tremulous right arm will start shaking violently and I’ll hardly be able to wash. The hot-tap water is barely above freezing until the hot water finally gets there, but the cold water feels good on my face, and I’m secure in the knowledge that warm water will follow.
I stand back from the doorframe and do 20 long slow pushups against it, my feet about 3/4 of a metre back from the frame. I get a very good feel for how much work each arm is doing and whether or not the right arm is cheating. The scapulae almost touch, as they should, as I do each. Triceps are re-emerging in my right arm.
I am smarter than my right arm, see. It doesn’t get away with slacking, as it used to.
Now I stand in the lounge room. I drag my right arm into position behind me, left hand clasping the right. My body is as much in symmetry as it can be. I stand flat on my feet; not a mean feat (hah!) these days. I slowly raise my heels as high as I can, 20 times, as balanced as possible.
I stretch my arms upward, still clasped, 20 times, taking care to make the right one work as hard or harder than the left. I am continually remapping this activity in a part of my brain that isn’t damaged. That way I recover from seizures more quickly. At least, that’s my theory....
I stand on the left foot and raise the ankle 10 times. That’s not hard. I then stand on the right foot and repeat the exercise. That’s a good deal harder as the ankle doesn’t get the signals as clearly from the brain – but it works. Well, if it fails, I add another lift – each failed one doesn’t count. 10 times. The ankle feels weak, but with willpower it does what it’s told.
I stretch the right arm hard across my body and twist at the hips. 20 times. I keep the stretch of the arm, 20 deep breaths. Good for the lungs, which sometimes get wheezy.
Nearly there. Just two more things to do. I do alternate ankle-raises making sure the knees are well involved with the process, 100 of them this time. I need this action to improve walking. It demands concentration.
Finally, I stand balanced flat footed, and knee-bend down almost to a squat, 20 times. Good for flexibility.
Then a mini-cool down recovery period. I stand on tiptoe as still as possible for 20 deep breaths. For me, this is very hard and I need to concentrate in order not to lose balance. I surely need that bodily balance.
By end of this, my hips feel rubbery, as do my knees. I have to lock them into position consciously or I’ll sink. Some days are worse than others. After the seizure the night before last, I have lost about 20% of the strength and freedom I had the day before. How quickly I get it back depends on what happens in the next few days.
This exercise routine is very important to me in every way. I do more exercise later in the day, but if there’s one thing I have learned from a chronic debilitating disease, it is how vital it is to retain as much physical strength as I can, even if it’s only in areas of the body where it’s possible and where others have to be ignored.
And so to breakfast. But you have had enough of the first hour of my day, if you’re healthy and don’t even have to contemplate these things. I am thinking that this very simple stuff may be useful for others where their lives have suddenly and radically changed, or for those who care for them. Of course, it’s different for everyone, so check with your doctor first!
Friday, June 17, 2011
We’d travelled from Vienna all the way by train to Sweden. When you look at the geography of northern Europe, that might seem slightly strange, because in 1973, it usually involved going across the sea between Denmark and Sweden. The way they did it then was that the entire train rolled on to the night ferry and rolled off again at the other end, and continued the journey. That, as you can imagine, solved a lot of logistical problems, as people didn’t have to get on and off the train from Denmark for the entire journey.
|Boarding the train ferry: Photo courtesy|
Within seconds, I could feel the cold closing in through the roof of the carriage just above my face. It didn’t feel like the heat being sucked out; rather that the cold just descended like a freezing blanket from above.
I’m sure everyone in the train froze until its engines were switched on and it rumbled off the huge train ferry, and headed for Køpenhavn. (OK OK, Copenhagen – I feel more comfortable with that....) The warmth flooded through the train and into our frozen bodies as if we’d skolled a tumbler or two of cream sherry.
|The coast is at 4 o'clock in the map below Køpenhavn and above Kage|
All of which, I’m afraid, hasn’t a great deal to do with my story, except that on the way to Copenhagen, the train-line passed by the sea on the eastern coast. It was winter, as I said, and the sun had no intention of getting out of bed at a respectable hour.
Still, it was far from pitch black outside, and now here’s the picture as it remains in my mind, nearly forty years on, that I want to paint in words for you.
I looked out of the carriage window as we travelled along the shoreline. Leaden waves were lapping a narrow beach. As children of the tropical coast of Australia, waves lapping beaches were in our blood. Yet this was an alien world.
On this occasion, it was starkly remote for me, because the waves were breaking lazily into thin ice offshore. The beach was not the fine white sand we were used to, but covered by large patches of snow. Icy waves were breaking on to the beach as well, like shards from some giant mirror that had been shattered into a million pieces.
It made me think of the magical Hans Anderson tale, The Snow Queen. If you've never read it, please do as soon as you've finished this! That story, set in a world so remote from any I knew as a child, peopled by characters and creatures so bizarre and entrancing that I read the story scores of times.... here on the Swedish coast was its setting, it seemed to me. Kay and Gerda, and the enigmatic Snow Queen who so fascinated me as a child; they couldn't have been far away from that alien shore.
I looked beyond the horizon and above the bickering waves, and there it was. A comet, hanging in the sky, and not another celestial body in sight. If it hadn’t been so entirely motionless, I might have thought it were a plane, but any such notion was quickly dispelled. Planes move. And this had a flaring tail, immobile as well, or so it seemed from my vantage point.
Until then, I had never seen a comet before. My sister Lyn told me of a comet she had seen early one morning round 1967 at Calliope, but this was my first time. It was Kahoutek, though I didn’t know that. I didn’t even know a comet was visiting the solar system, as we had been travelling round Europe for some weeks previously and had lost touch with all such things.
There was my Dali-esque scene. With hesitation, I used the word ‘surreal’ already in the past week on my blog, but this world of dark water and waves and ice and snow, with a mysterious comet pinned above the horizon was something I feel he would have painted with great relish. Maybe there's an artist reading this who could take his place and paint one for me to include!