Simplicity and the complicated

See simplicity in the complicated.

Achieve greatness in little things.

                                  Tao te Ching

When I was about nine years old, my father contracted Q Fever. 

   It was well named. The disease was so mysterious in the 1950s that the Q stood for “Question” or maybe “Question Mark”. He was very sick; so sick that for the first time ever, and much against his will, he allowed himself to be sent away from the farm by my mother to recuperate at the beach.

   As far as I could ever remember as a child, he had not had a day's holiday. Uncle Frank took some time off from his job at the meatworks in Gladstone to come and help my mother run the farm while Dad was away.

   I have very fond memories of my father's illness, because he took me with him on this holiday. Nothing like that had ever happened before – he and I together – and it never happened again.

   Uncle Siv had a shack at what was then regarded as a remote little beach called Tannum Sands, now practically a suburb of Gladstone, but at that time a ramshackle little village of two dozen or so jerry-built shacks which people had put up as weekenders.

   It was a magical time in my life. Just before dawn every day, my father would take one of the fishing rods at the shack, and, with me hot on his heels, would go to the surf beach just down the little hill to catch our breakfast. There were plenty of fish about at that time, so we were always guaranteed a breakfast of whiting or flathead or bream.

   I would wander about the beach, collecting anything of interest to me, or just straddling a log washed up in a storm at some stage; special to me because it reared up from the sand rather like what I imagined resembled a Viking ship. 

   As dawn slipped through sunrise into early morning, I'd watch the change of mood in the sea and sky while the soldier crabs scurried about and the seagulls did their foraging and bickering on the creamy sands. Behind me, the dew dried from the leaves of the great eucalypts and added their scent to the salt-laden air swished by the surf. It was a poem waiting to happen.

   Life just doesn't get any better than that.

Photo: Jan Stockwell

   Just after that holiday, we were taught a poem at school which I can still recite. Anyone who has experienced the Australian bush at dawn, sitting by the ocean as the tide comes in, can easily relate to this purely descriptive song of innocence.

An Australian Sunrise
by James Lister Cuthbertson

The Morning Star paled slowly,
the Cross hung low to the sea,
And down the shadowy reaches
the tide came swirling free.

The lustrous purple blackness
of the soft Australian night
Waned in the grey awakening
that heralded the light.

Out of the dying darkness,
still in the forest dim
The pearly dew of the dawning
clung to each giant limb.

Till the sun came up from ocean,
red with the cold sea mist,
And smote on the limestone ridges,
the shining tree-tops kissed.

Then the fiery scorpion vanished,
and the magpie’s note was heard.
The wind in the she-oaks wavered
and the honeysuckles stirred,

The airy golden vapour
rose from the river's breast.
The kingfisher came darting
out of her crannied nest.

The bulrushes and reed-beds
put off their sallow grey,
And burnt with cloudy crimson
at the dawning of the day.

   It wasn't until my undergraduate university days studying English literature that I became aware of the hidden layers of meaning in the poetry of William Wordsworth. He was to me the leading light of the nineteenth century English Romantics. I was well aware, long before, of the romance of foggy autumns, two-toned critters before 1959 pink and grey Holdens, lovers on Greek pots never quite getting it on, and the pleasure dome of Xanadu, but not what Coleridge and Shelley and Keats were really searching for.

   It so happened that at the same time, I was studying the Asian philosophical traditions, particularly of Taoism and Buddhism. The connection between the  Romantics and the Asian mystical vision struck me with absolute clarity, and none more obviously than in this part of what I regard as one of the greatest of poems of the Romantic tradition in England. 

Source

Lines Written a Few Miles Above Tintern Abbey

...For I have learned
To look on nature, not as in the hour
Of thoughtless youth, but hearing oftentimes
The still, sad music of humanity,
Nor harsh nor grating, though of ample power
To chasten and subdue. And I have felt
A presence that disturbs me with the joy
Of elevated thoughts; a sense sublime
Of something far more deeply interfused,
Whose dwelling is the light of setting suns,
And the round ocean, and the living air,
And the blue sky, and in the mind of man,
A motion and a spirit, that impels
All thinking things, all objects of all thought,
And rolls through all things. Therefore am I still
A lover of the meadows and the woods,
And mountains; and of all that we behold
From this green earth; of all the mighty world
Of eye and ear, both what they half-create,
And what perceive; well pleased to recognize
In nature and the language of the sense,
The anchor of my purest thoughts, the nurse,
The guide, the guardian of my heart, and soul
Of all my moral being.

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The Avastin dilemma

As you see, I was sent a comment a couple of weeks ago by Rachel, and I thought what she said was so relevant to many people with a GBM (the most aggressive form of brain tumour, which I have), and their families, it was worthy of a separate response.

August 13, 2013 at 12:36 PM

Hello,

I am posting from Melbourne - I read your posts and so enjoy them. My Dad, aged 68, has GBM.

He has just declined Avastin as a final treatment option - he was diagnosed in March 2012. We are now just going to back off anything to do with hospitals and appointments and let him be at peace on his own terms as much as possible.

I think its natural to wonder what if he did just try Avastin, but its his choice, and I respect that. Your insights are so valuable - thank you for sharing them. I wish you and your wife all the very best. x

Rachel

Avastin works differently from chemotherapy.
Don't worry - that's not what the posting's about!

   Rachel's Dad's dilemma is one faced by many GBM patients, particularly those who are not rich, and that probably includes most of us. Although this problem is not limited to this one category of brain tumour sufferer, her father has the problem most of those in advancing age do.

I know because I was in that bracket when I had to make a choice.


The problem: is the cost of the treatment worth it?

It's a decision that in the end must be left to the patient, who should not be pushed into a decision one way or the other by any other person. They should consult whoever they like about it, but no-one else should make the choice for them, nor try to.

   Rachel and her family stood back, and let him make it. They would have had their opinions, and they were entitled to express them of course. If he chose to go ahead with the treatment, as long as he could finance that decision and not impose on them, that's where their rights ended.

   Rachel didn't say why her Dad opted not to try Avastin, but his choice was his business and not mine.* He may not have told his family why. His choice again.

   I agree with Rachel that it's natural to wonder whether Avastin was worth a go for him, but the choice for many depends on a number of other factors. I already mentioned cost and age, but let's try to list some:

* cost
* age
* other medical conditions
* concern about side-effects
* belief that primary life goals have been accomplished
* religious beliefs and/or personal philosophy

   My choice to try it was based on these considerations:

* I could afford to experiment with one dose of Avastin
* Tracey and I were in full agreement about trying one dose and observing its effects
* I was fit and healthy when the tumour was diagnosed
* I was prepared to risk side-effects
* In terms of quality of life, I was at a stage when I made the choice where I had little to lose
* there were no indications of any other problems likely to develop with or without Avastin
* I had tried every conventional treatment and had no faith in others, especially those where heavy costs were involved with no reasonable evidence of success
* I was excluded from trials by conditions set by trial researchers – usually age
* I was in any case in no condition to travel for trial treatment

   If I had had a negative reaction to Avastin, or there was no evidence that the $6,000 shot had done any good, that would have settled the question once and for all. Many with GBMs get no benefit from the drug. It would have been worth $6,000 just to know that.

   Ironically, the risk in my decision was that the first Avastin infusion might have the positive effect we'd hoped, which seems crazy, I admit. But when you're in this position, it's not quite so odd. I'll return to that.

   I think the worst result would have been a small or apparent gain that did little to improve my quality of life but gave some hope, probably unjustified. Would another dose improve things? Or would it just be a waste of money we couldn't afford to spend? Not one person in the world could have predicted.

   Fortunately, that didn't happen.

   What happened was that the first dose of Avastin was a resounding success. From a medical point of view, it was obvious that we should continue with the treatment. No doubt about it.

   We didn't know how much extra time it would give me. It was possible that its benefit would end within a couple of months, or it could have gone on for longer. There was no way that we could know. Unless something like a heart attack or stroke happened to end the program almost immediately, it would've been mad not to continue. After all, an Avastin infusion every three weeks does not have the debilitating effects of most forms of chemotherapy.

   The only thing that stood in our way was the cost, and that was my dilemma. We were looking at an outlay of $25,000 at least, within three months. It was an amount I could have scraped up from somewhere, but at a cost that would have put my family into significant hardship. Christian was still at high school, and Tracey would have been left with not enough to live on after I was gone, faced by the usual – and rising – costs of living.

   I don't know how much you know about the rest of this part of the story, but I will just say that family and friends got together to make donations and have a benefit night which raised a substantial part of the $25,000 needed. We knew we'd be able to stretch finances to close the gap at the end. We knew that we were not financing a possible cure but a possible extension of reasonable quality life.

   A large number of brain tumour sufferers are simply not in a position to do that, or to be as fortunate as I was in having generous groups and people who were willing and able to help. Others prefer not to take the risk that a significant amount of money will be wasted for very little if any gain.

   This brings me back to Rachel's Dad's decision not to have the treatment at all. He made his choice and I'd most likely back him to the hilt.

   There's no doubt that I've been very fortunate with Avastin. I don't know of anyone my age who has gone on for anything like the length of time I have.

   In the three years I've been on the drug, I've had relatively little discomfort from the Avastin itself. Without the protein excretion tests on my kidneys every three weeks, I doubt if I'd known there was any attack going on to them at all. Over this time, using the drug has caused plenty of indirectly related and serious problems, though. It's not been all beer and skittles. Far from it.

   So now we continue to play the delicate balancing act we have been engaged in ever since we knew that Avastin's positive effect has diminished, and its negative ones have come to the fore.

   Thanks for giving me the impetus to write this, Rachel.

____
*Incidentally, when doctors get what they believe to be untreatable cancers, they often adopt the same decision as Rachel's father, so he's in good company.

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Common sense from an ancient culture

The ancient Indians had life nicely thought out, in theory at least. We could learn an awful lot from them.

   They figured that life had four stages: studentship, then what they called a "householder", withdrawal from worldly matters, and freedom.
 
   Now, I know a lot of people don't have marriage or its equivalent on the agenda these days, but you can happily substitute the style of your own working life at that spot, whatever it may be. You still have to give yourself some security for old age.

   The four-stage formula makes sense, regardless of where the person is on the social scale. The first is a time of learning; the second when they put what they've learned into practice; the third, as they got older and more free of responsibility, to rid themselves of material things; and the last, freedom in every way from all bonds – even of obligation to family and friends.

   Hinduism has always been based on a flexible philosophy, and none of this was really set in stone. If you go to the ancient texts of Hinduism, it may seem like it's prescriptive, but that would be a mistake. It's not a discussion I want to get into here. The point is that each stage of life follows a sensible pattern.

   Take that second stage, for example. Other religions may make people feel guilty about having possessions. Hinduism's view is that in life there is a time for possessions and money which went beyond a right – it was a duty, to yourself and any dependants. If you're going to settle down and have children, then you must have a house or some suitable place to live and you must be able to provide for your family in every way.

   If you acquired wealth in a morally correct way, all to the good of society. You could employ people, and give them an opportunity to support themselves as well. So there was no need to feel any guilt about this at all.

   To bring this to the present, the big danger is getting lured by money, power, or possessions, and being trapped by them. Western-style teaching from cradle to grave is about these three. This makes it hard for some in western style society to accept the third and fourth stages of life, but they make profound good sense to me. 

   From a purely selfish point of view, the only material things that matter to me now are those that allow me to do what I'm doing at the moment, and to stay alive. If they're useful to other people when I'm gone, that's perfectly okay with me. I won't be using them.

   As it turned out, I'd been forced to accept that position of renunciation anyway. Necessity has turned into virtue. My beautiful video cameras, which you'd have had a great deal of trouble prizing from my grasp four years ago, I can't use any more. For months, it's been the same with the most powerful computer I own. I've given away a collection of 50 years' worth of books, or at least those anybody wants to have. The ones no-one else wants sit there sadly on the shelf, and whatever happens to them after I'm not around is not my business.

   I doubt if anyone would want practically anything else I own, unless you're crazy about well-washed tracksuits and the now-famous drop-crotch PJ pants.

   Tracey has done an excellent job over the last years in getting rid of all the things that I've collected in the garage that are of no use to anyone – even to me. Maybe, especially to me. I couldn't bear to throw them out myself or to dispose of them in some other way, but most of them are long gone, and I simply feel relief at that. I don't even remember what half of them were.

   But it's that last stage of life which is the most difficult – the one where I'm supposed to come to terms with attachments of all sorts, and that means to people as well. It's the time when I examine and clarify thoroughly my relationship with everything that has meaning beyond and within my current existence.

   It's all about being able to let go of what you can't have anyway. My definition of grief is failure to do that.

   I am comfortable with that last part. But what I know for sure is that, if things go in the way I hope, I'll have the images of those people who matter to me most in my mind at the end. I don't mean a physical presence – I mean I hope I'll have the mental capacity to conjure up my image of the faces of those people I love from all parts of the globe. 

   If you get to read this, and not everyone will, you know who you are.

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Let me be clearer

It's 3.30 AM. I wonder which bird I'll hear first? Maybe I imagined it, but I woke at one point, and thought I heard the storm-bird, a true harbinger of spring. It foretells the storms of September, but officially, there's a few days left of winter.

    I'll be listening. All predictions that I would never see autumn were wrong. And now I've seen the spring blossoms.

    Whose predictions? Mine. Wrong. Rule 1 for someone whose life seems to be running out. Never anticipate.

    But at this end of the life spectrum, I've been never more entitled to make calculations. They aren't encouraging.

    Today I start a 24 hour collection of urine. Tomorrow, Tracey will take it to Pathology for analysis. It's the most critical one yet.

    I hear several little birds now, looking, I guess, for the early worm, or the best of the nectar. None are close by, but funnily enough, one sounds like the koel, my storm-bird, except not in that familiar mode. I'm probably mistaken.

    I had no intention of being awake now. Tracey was very tired at 11.30 pm or so, and needed to go to bed. She likes to see me securely in bed first, so she'll have a chance of less troubled sleep. I've had an afternoon sleep and wanted to go on for another hour, to write what I'm getting to, but I went to bed anyway, Good choice all round.

    Something had me by the throat. It wasn't exactly strangling me, but it felt like large hands were curling around my neck and squeezing tighter and tighter. I knew it was a seizure, but instead of the warning from my right arm or fingers I usually get, this time it was straight for the throat, tightening gently at first and then with more strength.

    It's not like I was surprised. Since 6 PM yesterday, I'd had three, starting in the fingers and making a grab for the throat, leaving me emit a noise that was supposed to be speech, but was garble. I was trying to tell Tracey something, but gave up when the same strangled sound came out.

    "Don't try to speak. You can't."

.

    I couldn't, but I wanted something.

    "W.... Wa...." was as far as I got. The seizure was subsiding.

    "Water?"

    It made sense, but I waved it away, and tried again.

    I opened my hand, and made a circular motion across my face.

    "Wa... Wash...."

    "Of course. Washer."

    "Cold," I said, clear enough. "Face...hot."

    She was inches from the bathroom. It felt good – water from the tap at this time of year is just a few degrees above freezing. I cooled my face from the effect of the seizure, and ran the washer over my hair. Except for the slurring in the voice, things went back to what they were. On the knife-edge.

    That was one of the times before I went to bed. No wonder Tracey wanted to see me tucked up. Standing up after a seizure is a risky business.

    So after being jolted awake by the strong seizure, I wondered what the time was. Usually I'm good at guessing that. I reckoned about 3.45 AM.

    It was 1.30 AM – the time I often go to bed first time round. I tried to settle back to sleep. The Kindle, I thought. I'll read a little and that will sort it. Never fails.

    I turned it on, but I'd forgotten it was so low on battery that it went on strike. There was no way to recharge it without waking the whole household. Just go back to sleep.

    It's not as easy as it sounds. For the first time since the hospital fall, I decided to try to sleep on the right side. I was pleased to find that the muscles all down that side weren't too painful to sleep on.

    The advantage of sleeping on that side is that with my strong left arm and hand, I can just reach the bed frame and use it to turn myself over well on the right side.

    One-handed, the doona is hard to arrange when the light is out, as it must be before I try to turn on my side. Suddenly it's all complicated, but I managed something to keep me warm enough. The upper leg was hurting but it was bearable. I drifted back to sleep.

    Bang! I'm taken by the throat again, this time, harder. Another seizure, strong enough after it's finished to leave me with sore neck and back muscles – ones that haven't been tested before like this. I feel like I've swallowed a pineapple – one of the old rough-leaf ones. My face becomes contorted and my head twists and shakes. My vision is distorted. I lie still until it's over. There's nothing anyone else can do about it short of bombing me out.

    That's it. I get up. It's 3.30 AM this time, and I start writing this.

    Now that I've got this far with writing, it's 5.30 AM. I had a couple of other dramas en route – and the seizures don't stop, but we've both had more than enough, right? I'm going back to bed and come hell or high water, this time I'll sleep.

    What happens today decides my future. If this 24 hour test fails again, and Avastin ceases, I'm going to get more and stronger seizures, because I'm at the limit of other drugs. You may think you've seen it all in this blog before. Don't be misled by my failure to lay it on the line.

    Medical science can do only so much. I don't expect miracles. Worse, I've still been beating around the bush with the posting. Too many birds, not enough substance. 

   Maybe I've made it a bit clearer with today's posting here. I try to look after too many people beyond this house.
 

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Two Left Feet

Source

I have a very good friend. He's a medical doctor.

   I've never met him face to face, but that makes no difference at all. I don't even know exactly where he lives.

   It doesn't matter. His name is Ashley, and he occasionally writes poetry, about things that matter to him, to other people, to this planet and to the universe.

   Recently, he wrote a sonnet – just fourteen lines, for Tracey and me. He wrote it because he knows all too well how the tide comes in and goes out relentlessly, disinterestedly, on human affairs, and he keenly senses the changes in that tide.

   Here are four of the fourteen lines. I could reproduce it all here but it's not blog etiquette, so I'll limit myself to just four, and ask you to go here to see them in proper context.

   We found it beautiful, and it produced many tears in this household. Not from me of course, because I'm a hard man. I just wish I didn't have to keep telling people that all the time. 

TWO LEFT FEET

[excerpt]

...
It doesn’t matter things aren’t as they seem
The song which plays was not our first request
As no one scores a life from just a dream
You had me at my worst, I had your best
...

Thank you for caring, drng. 

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Ten lessons about life (revisited)

When reporter Daniel Piotrowski asked me to fill in details for him about lessons that life has taught me, I had not the faintest idea where that would lead. I thought the story might appear in a little corner of a newscorp daily newspaper, but it was made front page stuff in the Lifestyle section at news.com's site. From there it was distributed through the newspapers around Australia. 

   The story was then pinched by other newspapers round the globe and translated into various languages, discussed on radio and TV and is still turning up in odd places. It had other effects I don't want to get into here.

    If you read his story, and the follow-up he never expected to be writing, you'll see its bizarre global journey. The focus was on Ten Points about Life that I scribbled down in response to one of his questions.

From the follow-up article

    His interest stemmed from the fact that my blog straddled a watershed; in time, a lopsided one, but in experience of two different worlds, much more balanced.

    The watershed point is reached when you face the prospect of your own fairly imminent death, not as an abstraction but as a brutal truth. It is only then that we get a chance of having any truly balanced perspective in life.

    I daresay many will disagree with this, or at any rate, find it disagreeable, because the term is used in many ways. It's not up for discussion here.

    What happens at that point is that you begin, maybe for the first time, to learn about love in a different way. We may know about the intensity of love in all its forms in that other world — of a child for its mother, father, and siblings, of a friend or lover, or a parent. But facing your personal death makes it something different, and affects all bonds and all attachments. This in turn cannot but affect the relationships others have with you.

    Again, I'm just leaving that on the table.

    For sixty-three years of my life, I was barely touched by death. It may seem strange, because in that time, I experienced the deaths of my father, my two grandmothers, all eleven of my aunts and uncles on my father's side, some good friends and colleagues. Of course I mourned them, and my father's death had a very strong impact; but I was eighteen then and making my own way in the world. My mother's youngest sister's death saddened me immensely, it is true. She was much loved. My father's brothers and sisters died of age-related illnesses for the most part. All of them were older than my father and we were very close to some of them.

    In a sense, this is everyone's experience; that of losing those they care about to varying degrees, but until they grow older, comparatively few in first-world countries have had to face the real prospect of their own death.

    It was not until my youngest sister's death five years ago that things changed for me. As a mature adult, coming from a stable family, there is nothing like the death of a deeply-loved sibling to shake any delusion of immortality, or even self-importance. That sibling probably shared with you some of your most intimate life moments until different forms of relationships took over your life; ones I also leave on the table here.

    The world just moves on no matter what your pain at your loss. It will when you die. That's how it is supposed to work in a healthy society.

    The reason I come back to it here is that a couple of these ten points need a little clarification, which is what I'm doing now. It's time to cut to the chase.

    As reported in the Lifestyle article with added comment:

Life lessons

by Denis Wright

1. Don't spend your life in a job you hate. Life is too short to live it only in the evening and at weekends.

One thing I should have added here is that it must be read as a companion to No. 7. below. It all very well to toss in that unfulfilling job on the spur of the moment, and then find you don't have enough money to live on. Change may be the goal but it's probably unwise to leave your safe place until you have found another.

2. If there's something bad happening in your life that you genuinely have no control over, learn all you can about it and how to live with it. Beating your head against a brick wall is unproductive. Taking possession of your life is what you must do.

3. If you think you can change it, then go all out to do so. Try to understand its nature and work with it where you can.

4. There are no 'good' and 'bad' decisions. If you made what you think might have been a poor choice in life, learn from it, and you might make a better one next time. You don't know what's going to turn out good or bad in the long run, so regrets are a waste of time.

5. Don't agonise about the past. You can't change it. Live in the slice of time that's the now. You can't live in the moment; it's too short. The slice is richer. It contains a little of past, present and future.

6. Apologise as soon as you can when you think you've hurt someone. Don't try to pretend you're perfect. Accept responsibility where it's due.

... to which I add, don't be afraid to say, "I don't know." You can always add, "But I'll try to find out."  When I was teaching history at university, it was usually [to a student], "But I know where to find out." I suppose it depends on the relationship between the questioner and you.

7. Keep your options open for as long as possible. Don't close them unnecessarily.

8. Try to keep your sense of humour if you can, though it's not always possible. Nor is it always appropriate.

9. Carpe Diem .... Or, for a change, seize the day!

And there's one more.

10. Do not be too afraid of death. If you're not more afraid of your own death than you need to be, then you should have little fear of anything life can hand out.

This was the one needing most clarifying. The biological imperative says some fear of death is needed to stop you doing stupid things that cost you your life. As we know, it's far from failsafe. But that's its only purpose in survival.

You have to ask yourself exactly what it is you fear, and deal with that. Being dead should hold no fears for a human being. You just need to do all in your power to make the transition as gentle as possible.

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A sunset interlude

Armidale sunset 7 August 2013 [Photo: Tracey James]

 It's my standard practice to have an afternoon sleep, and I really mean, sleep. Dead to the world, for a couple of hours. If I don't, I get ratty by 9.30 pm and have to go to bed then. That's unbelievable for me. 9.30 pm is just when I'm hitting my straps. At home, we don't ever go to bed before 12.30 pm.

   It seems that my waking time here for that sleep in hospital is usually 5.20 pm - just in time to freshen up a bit before dinner arrives. What a coincidence, you say.

   Come on now, don't be mean.

   Yesterday afternoon, it followed that pattern. I woke on cue, found one of my secret store of pristine paper serviettes entirely untouched by human hands apart from mine and those of the person who put it on my tray. I sprinkled its folded surface quickly with water from my drink bottle and dabbed my eyes and face with it, and disposed of it in the waste bin on the floor at hand's length.

   In the first weeks I came here, this was my only way of freshening up after sleeping, because of my lack of mobility. I admit I've kept it up even though I now do have the mobility to get to the bathroom with a zimmer frame. I have my reasons for doing it this way unrelated to laziness.

   For people with physical disabilities in particular, everything in an unfamiliar environment is about solving new little problems. Little for you, big for us. I could write an entire blog posting on that, but I'd have to finish it before I knew whether I thought it was good enough to post, so... another time. Dave will know instantly what I'm talking about.

   It's nothing for me now to slip across to my chair even without the frame. When I first came, there was the frame and one or two nurses standing by. Physio guidance and newfound determination to stand and get mobile have done the trick. Well, let's be accurate, have begun to do it.

   Before dinner arrives, a nurse trundles in with the routine blood pressure/temperature monitors.

   "I'll bet my blood pressure has gone up since this morning."

   "You've just woken up," she says. "It shouldn't have."

   "It will have."

   It has, by twenty points. She doesn't know that yesterday morning when it was taken I'd been exercising not long before. I'm funny like that but it's always been the way. Exercise half an hour before a reading is taken and it's way down.

   The moral is, don't panic if the doctor measures yours and it's higher or lower than normal. It could be significant but it mightn't be a true indication of what your blood pressure really is on average.

   So mine was quite high.

   "I don't like that systolic reading," I say, "and the other one... the – it won't come to me but I improvise – the PREhistolic one's not the best either."

   She laughs loudly.

   "Well," I say, "I'm an historian by trade, and if there's historic stuff and prehistoric...."

   "DIA-stolic!" she says,"The big one's diastolic and the little one's systolic."

   "Funny," I say to her, "I always thought it was the other way round."

   "No."

   She's definite, but as soon as she's gone I google it. I'm bloody well right.

Doctors call them systolic (the top number) and diastolic (the bottom number) blood pressure.

   I'm gonna see if she's willing to take a bet on it next time we meet. This is going to be fun... I have to think what the stake is though.

   Dinner came. (OK, pedants, I know I changed tense, but hell, musicians can change key, so don't try to stop me.)

   What did I order? I never have the faintest notion. Soup. OK. It's vegetable soup, now I remember. It's good. Good-ish then.

   I don't think the general food quality's gone up. Maybe it's just that my expectations have dropped and/or my choices are slightly better.

   What next? Looking at them, I remember them from my order also. Vegetable patties. Two of. Bigger than the palm of your hand except if you're a top-grade AFL player or maybe a discus thrower who's won a medal, any colour, at the Olympics.

   This is Friday, and my proteinuria test's already over. Why am I not hoeing into a steak composed of some portion of what my almost-vegan friend calls "dead animal"?

   Here's the sad truth. Not only is it that an eye fillet or tender piece of flesh hacked from the hind quarters of a cute little woolly animal are not on the menu, I can't comfortably digest it any more. I know, it's shattering. I'm horrified myself.

   At least this time it is correctly named, unlike the "salmon"-vegetable patties in the first week that a fish of some description may have swum over in the making, and I decided on baby carrots alone, having resolved never to go back to the poultice described on the menu as mashed potato. That was the first and final occasion.

   I don't know if it's policy, but there's invariably the same quantity of veg. on the plate, no matter what the variety. I suspect each plate is put on the scales and whatever is ordered is ladled on until the needle tips.  

   When I hastily banished "mashed potato" from mine, the space was filled by extra of beans, broccoli and carrots. I dropped the beans because they looked so sad, and more broccoli and peas bravely gave their lives as a result.

   This time, I dropped everything from my order but the baby carrots, and whaddya know. Some ripped-off carrot farmer's entire harvest surrounded the vegetable patties on all sides and completely controlled air space as well. The patties stood their ground strongly, and I ate them with my fingers like giant sized ANZAC biscuits, forking in at intervals as many baby carrot rings as I could manage.

  For dessert, a clear plastic square container boldly exhibited two pear slices looking for all the world like foetuses in yin-yang orientation (that's 69 possie if you haven't yet grasped one of the fundamentals of Chinese philosophy but have learned a bit from SBS late-night movies). These foetuses were in an amniotic fluid of unmistakably yellow custard. Not, I suspect, the sort of amniotic fluid you would want to have.

   The metaphor's getting way too murky, but it tasted pretty good.

   That was my sunset interlude and, as Dale Kerrigan says in the wonderful Oz movie, The Castle, that is my story THE END.

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Writing from inside a seizure

The basis of this was scribbled tonight on the medical side of the blog, but many people don't go there or don't see what's there unless they click on an archive area. It's what happens in brief when I'm actually having a focal seizure, as I was tonight. I thought it of sufficient interest to publish a modified version here as well, just this once, because you might be the only person around when someone has a focal seizure. I reiterate, this is what happens to me, and for others may be very different, and the nature of focal seizures has changed for me over time. 

This is today.

Tuesday, 6 August, 2013. 6.40 PM

Source

Sometime on Sunday evening after I posted last Sunday's roundup, I had a couple of more severe seizures – not the worst I've had, but close. These have been followed up to now by the usual frequent low-level aftershocks. 

   Seizures are brought on now by any little change, such as new visitors of any sort, or some slightly stressful event. The effect is directly related to the type and amount of the stress. 

   Some chemical (adrenalin?) which changes brain activity even to a tiny extent sets them off. It's hair-trigger territory. And strangely, one of the strongest triggers is talking or writing about them. I've had to pay for this couple of sentences by the strongest seizure of the day, but I needed to explain this reaction. It's become an auto-response, which is a pain in the neck, sometimes literally, like now. 

   No-one is around, so I don't have to speak, but if I did try, I may not be able to. I just tried and it's not bad, but then I'm not speaking to another person. As well, the loss of control over the larynx may be delayed, especially if other factors like a new person coming in play their part.

   I'm doing this for a clinical description which may help others, bearing in mind that it may be completely irrelevant to another GBM sufferer. It just may help to explain to carers of some patients what a hair-trigger their care-recipient is on, if their behaviour seems unexplainable or even looking like a pretence as if to gain sympathy. Just let them sit quietly and don't speak to them unless they want to talk. Take power away from them, and you may prolong the seizures. Don't assume control unless absolutely necessary. Be around, unless they want you to leave.

   [Later addition: I've described many times in the now archived medical sections of the blog the sorts of seizures I've had previously when each one was a much bigger deal. Going from eight seizures a month to three an hour changes things! Most now are really minor while happening, though not their effects. The major ones now are much more unpleasant, involving creeping partial paralysis, throat stricture, tremors, head pain, eye fluttering and ticks of mouth, cheek and brow. The worst feeling so far is my head being forced to turn to the right as neck muscles on the right side spasm. This is the only time I really get concerned at how strong it will get, and whether it will stop.]

    I'm now starting to feel the seizures settle as I know I'm coming to the end of this description. That was hard work, and slight tremors are the legacy and will be for up to an hour. At times, other portions of my body may act as if I've been startled. Like I'm jumpy. Chemically I am, but deep down only slightly, because of the approaching proteinuria test that decides whether or not I will have Avastin next Tuesday.

    The combined effect of them all [I'm talking about before writing this] has been to set me back quite a bit in terms of general weakness, but in particular, weakening my right hand grip on the zimmer frame handle, which is very frustrating because I can't depend on it in the way I could even two weeks ago. 

    Now Sally has come in, and I'm about to have blood pressure taken. 169/77. Well above my average for the systolic [higher] reading.

    I'll talk more about zimmer frames on another occasion and my previous misunderstanding of them. It's enough of medical things for now.

    One last thing. The nurses coming in and out doing their tasks to and for me do not worry me. Their presence and good humour and professionalism are beautiful things to be surrounded by. It's not home and can never be but in this phase when they are needed, it is a reassuring 'second life'. 

    6.40 PM when I began this. It's now 8.20 PM.

   And it's now 10.30 PM!

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Baby-bibs and poached eggs 2

   Whatever you do, don't touch the poached egg.

I don't know the method other patients use to manage eating their meals, because I never see them at the task. In fact, I never see them at all except when ferried to Oncology by Tracey, and that's only once every three weeks. I've been here just two, so had I been interested, which I'm not, I'd have been lucky to see them at their repast.

Stable Table

   My method is simple enough. I have a stable table which I put on my lap, use the chair button to get it to perfectly horizontal, and Denise puts the entire tray of goodies on it. Being thoughtful, she has opened every item that needs it even before coming into the room. She also butters the bread so deftly that it almost makes me cry at my loss of effective use of the right hand.

    I can manage everything from then on.

   But there's one small thing. To have a perfectly level tray, there's a fair angle on my trunk – my body, that is. If sitting at the dinner table is 90 degrees to the horizontal, then this is about 150. 

   Ardent students of geometry, a beautiful subject of study, will know that this lengthens the distance between plate and mouth. With soup or something a bit sloppy as main course (that's most things that I seem to choose, except for the grilled fish), the chances of dropping something on a fresh shirt increase exponentially at that angle. 
 
   Therefore, one needs a bib. Let's face it. When visitors come, one does not look as dignified as one would like with dobs of tomato soup, marmalade jam, and something optimistically referred to as blueberry cheesecake forming runic patterns between navel and neck.

   Sticking serviettes into shirt tops just doesn't do it for me. They come adrift from their moorings and simply get in the way as I intently explore the culinarily adventurous contents of the bowl of minestrone soup. The serviette hangs at a sad angle, allowing acres of shirt front to be open to guerilla attack and eventual occupation by the enemy.

   Invariably it happens, sometimes on the very last mouthful.

   In the desire to finish the task in a totaly unsullied condition, one sometimes makes the fatal error of rushing the soup spoon through the last few centimetres to the gob. Instead of a graceful glide of the implement to the lips, one's hand trembles in anticipation. One knows one has failed, now made worse by slight miscalculation of angle of spoon to the very lips themseves. One now has soup dripping down one's chin and in a long thin stream from belly-button to breakfast time.

   One feels, and is, a dork.

   The poached egg. Stand away from the poached egg.

   To reiterate, I need a bib. I was going to suggest to Tracey that she make me one, with something like BIG BABY gaily written in huge kindergarten scrawl across the front.

   Tracey found merit in the idea, but would have come up with a more creative epithet.

   The idea was that anyone intruding on my meal (an operation usually out of sight of prying eyes because it's an unedifying spectacle), would see the humour in the bib rather than its sheer practicality, and we could laugh our way out of it.

   The scheme, which I thought brilliant, had one flaw. It was that the carefully designed bib would inevitably become spotty, fulfilling its purpose admirably but losing its virginal status faster than a precocious teenager.

   If a poached egg is offered, desist.

   The bib would need washing, and I would find myself bibless and fearfully exposed to the elements until the laundry maid at Allingham Street had done her task and returned with the bib in sanitised and stainless condition.

   I then suggested that all thought of washing the bib might be abandoned altogether, and to allow the spillage to create something artistic as the days went by. Aeolian in its way, visual music composed of organic detritus of many colours – like Joseph's Amazing Technicolor Dreamcoat, only a bib.

   I liked that. A certain je ne sais you know what.

   I do know one thing at this point. My similes are getting out of hand.

   By the way, never tick the poached eggs box on the menu.

   With some reluctance, I abandoned the artistic idea. In my opinion, it may have been a sad loss to art, in view of some of the monstrosities currently posing in that guise. But Tracey vetoed it on the grounds of hygiene and lack of faith in art-of-the moment, which you have never heard of because I just coined the phrase. Art du moment, to give it a fancy title and instant respectability.

   Her veto is a veto as resolute as that of the Chinese Government in the UN Security Council. Or a veto by any one of that little club for that matter.

   Truth is, we abandoned the whole project. This was because when the nurse heard us talking about bibs, she went to the equipment room next door and came back with half a dozen freshly laundered bibs-for-adults.

   "Just leave it out after you use it and it'll go with the rest of the laundry daily."

   I think she may have overheard my artistic proposal. I felt a pang of regret that my art project would never materialise; that my unique chef d'ouvre would never be hung in the Louvre.

   Now about those warnings concerning the poached egg. They're ones everyone said in hushed tones here.

   I wasn't sure why they said it, but being of an enquiring turn of mind, the instincts of an historian and just plain nosey, when poached egg came up in the menu for the next day, I took the plunge.

   I expected that it would arrive either undercooked or like rubber, sitting marooned on an island of oozing soggy toast, sinking slowly in the middle, but no. I was shocked to find that it was cooked to perfection, sitting high and dry on its toasty island as if lightly dried off with a teatowel (maybe it had been) and would have made an perfect Egg Benedict had the chef gone the extra mile with bagette, fresh chives and Hollandaise sauce.

   I don't know what they were on about with all those warnings. Perhaps the contractors got a better class of auto-poacher.

   I can't deny the possibility that it was a fluke. A sample of one is not really good science.

   I've just got hold of the breakfast menu for tomorrow. If there's poached egg, it has my name on it.

   One last word on bibs. There's a variation on Murphy's Law that says if there's even one centimetre of shirt left uncovered, that's the spot the tomato sauce will fall. I reckon Murphy has engaged the services of a shirt-seeking nanobot inventor and has these bots in the soup et al cunningly disguised as pepper.

   Don't mock me. Just open the tiniest window on what lies beneath the bib, even right up at your shirt collar, and give it a go with baked beans – which, incidentally, I had yesterday morning with marmalade jam on brown bread. Interesting combo it was. It's why I'm full of beans right now. And a pressing date with the bathroom.

   There now, you've got your promised bib and brekkie story – now leave me to my poached egg. Be off with you. 

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

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