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

Monday, July 30, 2012

Show & Tell.5: The long and winding road

Tracey orders the meal, while I find a place that I divine through long Taoist practice is optimal for us – where the qi is as good as it gets, you understand, which is no mean feat in here. My Geiger-counter qi meter says go to the end of the extension room facing east, closest to a door that no-one goes through.

   So I think.

   Sitting there, I am reminded briefly of a hotel in China somewhere up the Old Silk Route when I led a group of thirty-four intrepid Australians on a Journey to the West odyssey to rival that of Monkey and his companions. On the second floor of this hotel was a sign: USUAL DOOR. Down the end of the passageway leading to the fire stairs was another sign: UNUSUAL DOOR.

   A child with facial features tending towards the primitive runs past me like a howler monkey and pushes the door with commendable gusto, ignoring a much more sensible entrance to the kids' play area he should have used in the first place.

   Congratulations, kid. You found the Unusual Door and stuffed up my qi. Bravo. Go to the head of the class next to the boy picking his nose.

   A pretty little girl dances in through the Usual Door to the play area. She kicks off one shoe and hurls it south, the other as far north as she can. Then she drags one sock off and hurls it west; the other easterly, and skips off to enter the large red tunnel. The dumb-looking kid lives up to my expectations by trying to enter the blue tunnel blocked by a partition of clear Perspex, and is mystified at his failure.

   Back in the dining area, a man in a powered wheelchair bulldozes the static chairs aside and parks at his chosen table. I like that.

   Eventually the girl's mother enters the playroom by the Usual Door, goes to the four corners of playworld and retrieves the shoes and socks. The girl plays on. The boy is still having problems working out how to get into the blue tunnel, mesmerised by the one entrance to which he has no access. My suspicions that he's not very bright seem confirmed.

   Against expectations, the coffee and meal take a long time coming. We eat and drink with less enthusiasm than I anticipated. We leave our dining establishment feeling the way we mostly do as the Golden Arches recede and vanish – downlifted.

   I think it's the effect of the children playing in the Macca tunnels that accounts for what happens next as we drive out of town. Well, I blame that.

   Instead of our usual discussions while driving back up the Big Hill – of ontology, epistemology, or Soxy the cat, I notice we're parallel to the train tracks leading to Armidale, and there's this sign to the left of us.

   'I wanna see the steam train,' I say. 'Can we see the steam train?'

   'It's just the sign indicating there's a railway crossing to our left, my doctor.'

   The 'my doctor' bit seems half-hearted.

   'But I wanna see the train!'

   'We can sit here and wait two hours for the train if you like. But it's the same train that passes within fifty metres of our door at 6.12 pm every day.'

   There's an irrefutable logic to that and I realise I'm on safer ground with existentialism, dialectical materialism or the transcendental idealism of Kant. You know – those -isms for which you have to sneak back to a dictionary to check their meaning when no-one's looking, which means you never really understood them in the first place. Like necessitarianism. Quoi?

   I extend the charade briefly by crossing my arms, looking huffy and sticking my bottom lip out, but we quickly leave the train joke and the plains behind us to begin the ascent to the high country. We sit in silence as the outside temperature gauge reading on the Forester dashboard drops sharply as we climb.

   It's the silence of What's in the Envelope. I feel as if Damocles is sitting quietly in the seat behind us, his eyes boring into the back of my head. The Brian area.


Sunday, July 29, 2012

Show & Tell.4: The Toast in the Machine

 'Now, we find a vein and inject the dye, and send you in again, only this time it will be much shorter – about ten, maybe fifteen minutes at most. Which arm?'

'The left.' I want nothing upsetting that right arm. 'Good luck with that. You may have some trouble finding a productive one.'

   He does have trouble. After some time he says, 'Do you mind if I use a vein in the wrist? I can see a couple of reasonable ones there.'

   'What's the difference?'

   'It may sting a bit longer and be more uncomfortable while I'm injecting the dye that's to go up into your brain.'

   Ma-a-a-ate. I have injections every day into my stomach and sometimes they're painless and at others when the Clexane has to pass through an over-used, scarred area of tissue, it's like a bull-ant's got me. Do your worst.

   'No problem. Just dig around anywhere you can find a likely spot.' I'm brave.

   He does, and he's right. It does sting more and longer, but I've had green-ant stings worse as a kid. The dye is in, racing up to my brain, and I'm soon back in the machine. I have no false expectations this time. It's going to be shorter.

   Still, you'd be amazed at just how long ten or fifteen minutes can be. Suddenly it's over, and they help me back off the table. I stand there, gingerly checking that I can balance on my feet, and walk. It turns out to be quite a challenge.

   I put my shoes on again, with remarkably little trouble tying the laces, and go back to the waiting room. I sit beside Tracey and we wait for the scans. Ten minutes, they said.

   He comes out shortly after, but we face disappointment. There's no large envelope of scans.

   'Would you believe, the printer's just kacked itself. No chance of giving you the images right now. I can burn you a CD if you like.'

   'OK. We don't want to leave here without something useful.'

   We can cope with a CD. Off he goes, and comes back shortly after, with the CD and the packet of films.

   'It's going again. Miracles do happen.'

   We go to pay, and there's another large envelope of scans there with my name on it. Duplicates because the printer went crazy? She goes to give it to us and then sees we already have a packet. Unsurprisingly, a look of concern crosses her face and she quickly takes them both into the scanning room to query this anomaly.

   'It's OK. These are yours,' she says, handing Tracey one of the envelopes.

   She looks embarrassed, but not half as embarrassed as they would have been if some other person opened their scan of what was supposed to be a complicated pelvic fracture and thought they'd acquired a bonus brain tumour.

   We walk to the car and get in.

   'I know we've got this unspoken rule that we don't open these scans till we get back to Armidale, but I'm going to open it and look at just one scan. I want to be certain we have the right ones. I don't want us to get back to Armidale and find they're someone else's.'

   The top image shows clearly by name and shape that it's definitely mine.

Yes. It is.
   'I'm dying for a cup of coffee.'

   'So am I.'

   But to go to a café in the busier part of town would cause endless difficulty.

   'You know where we're going, don't you?'

   I have not the slightest doubt. We haven't been together for thirteen years and my not know exactly what she's getting at. A place that's easy to park, coffee of indifferent quality but coffee nonetheless, on the way home, generally fast service, clean restrooms, far too many kids, and too many adults who do not have sylph-like figures.

   Just don't tell anybody – right? You can afford to be choosier about your lattés or mochas maybe. Well, bully for you. We're desperate.

   Even the chicken-salad-wrap-thing doesn't look that bad. We haven't eaten since 8 AM and it well past lunchtime now.

   O, the Glorious Golden Arches. SHHHHHH!!! Just bugger off if you're going to act superior about it. Don't tell me you've never drunk their coffee, or sampled a cardboard thingie of 'fries' that look like flaccid refugees from a matchstick factory. You don't fool me.


Saturday, July 28, 2012

Show & Tell.3: The Toast in the Machine

.They're running a fraction early too, and before long I'm called in.

   'Take your shoes off and I'll get a gown for you,' he says, 'Do you need any help?'

   I sigh. Do we have to go through this charade again? It happens every time. 'I don't need a gown. It's a cranial scan, not my body.'

   Getting in and out of clothes with my uncooperative right arm and leg is something I don't want or need to do for this, particularly in a booth the size of a dunny. He looks at my old sweater and daks. I've chosen them deliberately for this purpose.

   'No metal clips? Nothing in the pockets? Anything?'

   Full Metal Jacket, I want to quip, but there are times for such frivolity and this isn't one of them.

   'No. No eye operations, screws in my skull. Or bolts in my neck...' He grins a bit painfully at the Herman Munster gag. 'Nothing's changed since last time.'

   'OK,' he agrees readily with my sartorial choice.

   I can manage untying the laces and removing the shoes. I walk clumsily into the room containing the MRI chamber and lie on the table, after a struggle to get on it. It makes me all too aware of the mobility I've lost since last time, when I wouldn't have thought twice about it.

   I've misjudged and I'm too far up. The head cradle is closer to my scapulae than my neck. Try as I might, I can't move down enough. He has to get an assistant to lift me into position.

   These are the times when you realise how useless you've become. It's always a shock because you never quite expect it.

   They surround my head with packing to minimise movement. He explains the procedure. It's very familiar to me but it's his job to do so again. I get him to stick the right earplug in for me.

   That's another thing you'd do for yourself without thinking about it, but I'd have trouble lying there poking it into the right ear. He gives me a device to hold in my good hand. Press it for emergencies. It's something I've never had to do. I cross my arms in a kind of Egyptian mummy position. They put a light blanket over my body, which is just as well, because it's cold.

   As the table's motor trundles me into the chamber, the wisdom of crossing my arms is evident, as there's not much room in there. This must be the time when those who have a tendency to claustrophobia have their pulses racing; but really, it's not that bad. There's a fan blowing a gentle breeze across your face. You really need that. It's comforting. There is some space above your head.

   But you do feel very alone.

   'Are you all right there? Comfortable?'

   I realise that he's talking to me, but I have the earplugs in and his voice sounds like it's coming from a million miles away, talking to someone else.


   'Don't hesitate to press that buzzer in your hand if you need to.'

   Oh, I won't – but it would have to be pretty bad, because once we've started I don't want to have to repeat any of it. The only thing that raised my stress levels the first couple of MRIs was the fear of having a seizure in there, and consequently having to do it all again, with the added stress of knowing it had happened once already. But it never has and now it doesn't bother me.

   The clanking and beeping and shuddering of the machine begins, as it calibrates and does things I'm not sure of. I'd like to understand, but it's not something you get around to talking about. It seems very loud this time compared with those of the past.

   Sometimes I've been so comfortable in there that I feared I might start drifting off to sleep, but I really wouldn't want to do that. With all that clanking and beeping it's hardly likely.

   This time, it seems I've made a miscalculation based on faulty memory about the MRIs from the past.

   My recollection was that the first session in the machine was only about fifteen minutes, and then a long one of about thirty at least. But apparently that was wrong. It's the other way round. So I'd reckoned on coming out again fairly quickly on the first run, but it seemed to go on and on; all the longer because I was expecting it to be short. Even fifteen minutes in that machine with nothing more than your thoughts to accompany you is not a short time. Thirty-five is forever.

   Worse still, I developed a strong urge to clear my throat or to cough. You know what it's like when that happens. It becomes nearly irresistible. But, not knowing when or if there was a wrong time to do that for the sake of the imaging, I resist it fiercely. Not a muscle do I move.

   Finally, after what seems like an hour, I'm ejected from the chamber, not quite like a recalcitrant MP at Question Time in Parliament. I come out feet first. Occasionally I think some of them should. Meeoww.

   'Well done. You were very still." He probably says that to everyone, but it makes me feel like I was a good boy having resisted the urge to cough or swallow.

   'This doesn't feel quite like the same machine as last time. It seems ... louder.'

   'It is the same one,' he says. 'Oh wait – eighteen months did you say?' He thinks about it for a moment. ' You're right. It was replaced a year ago. This is a better one. Well, we get better images. Maybe the earplugs are different.'

   'Now, we find a vein and inject the dye, and send you in again, only this time it will be much shorter – about ten, maybe fifteen minutes at most. Which arm?'


Thursday, July 26, 2012

Show & Tell.2: blossoms, ashes, mistletoe and a guitar

We pass the airport and head along the flat tableland. It's never been an exciting vista, but easy on the eye. Again, I see burgeoning growth; the sap rising in the leafless silver birches, newish yellow branches amongst the older white ones.

   Further on, the skeletons of eucalypts which didn't make it through the dieback of forty years ago are now stark and white against the grey-green of the winter pasture. Some in their death are spectacular in size and shape. Amongst them are others still struggling with that mysterious phenomenon – large dead branches amongst others barely alive, with little patches of miserable leaves on them that look like they are carelessly attached in untidy bunches; a bit like the large tree in the picture above.

   Everyone who's lived here a good while has a theory about the dieback disaster. 'It's the Christmas beetles, says one. 'Root nodules.' 'Over-fertilisation.' 'It happened in the 1890s, so it's just a cyclical thing.'

   I have my views, but here's not the place for them.

   Ah, Chilcott's Swamp. I'd love a house address like that. I start noticing the roadside hoardings.

   'Some of these are ... amazingly bad. I could put funny captions to them. I wish we had more time to stop and take pictures.'

   'Just as well we aren't stopping, my doctor.' She calls me that from the university days. 'We've allowed 75 minutes to get there, and if I start taking photos for you, we'd need two hours.'

   It's true. We would. And my enthusiasm for it would be gone on the way back, as well as the perfect now-quality of the light.

   Funny that. If we were in Melbourne, staying with Lena or Alice, it would probably take nearly 75 minutes from the time we got into the car to sit down in the always-overcrowded reception area of Peter Mac, the cancer hospital in the centre of the city. Going to Tamworth, we'll park (no charge!) virtually at the front door of the clinic where the MRI is done.

   'Bendemeer coming up.'

   I state the bleedin' obvious. It's a township off the highway.

   'We've never explored its full scenic offerings, have we?'


Mistletoe bird
   Further along, I notice trees that are so heavily studded with mistletoe that they are dying. The little tangerine-breasted mistletoe bird eats the fruit pod of the mistletoe. It flies to another part of the tree, or to another tree. The seeds pass through the bird and it deposits a nice gooey mess containing the seed in a tree fork – anywhere it will stick, actually.

   Soon there's another mistletoe digging its roots into the gumtree and sucking the sap from the eucalypt. The rusty-green tresses of mistletoe make it look like the tree is weeping.

The mistletoe will murder its host
   So it should. This is a parasite, and too many on one tree will kill it. This isn't the sort of mistletoe you kiss under.

   'Tree cancer' I say.

   'You always say that.'

   'I know. I can't help it. That's not so far from what it is – in its effect anyway.'

   We talk about things that are none of your business, or we sit in a comfortable silence, cocooned in our own meditations, until we come to the top of the Moonbi hills. There are some beautifully scenic snaps that could be taken, as the valley floor way below is framed left and right by great granite boulders that guard the highway.

   There's a mountain in the distance. It's not quite Mt Fuji, as it's too worn down for that, but directly above it is a long, almost vertical puffy cloud.

   'That earthquake we had a few weeks ago must have done more than we thought.'

   'Very funny.'

   'Lava,' says Tracey. It's a private joke, though I'll tell it to you if you're interested. We laugh.

   Still, I do wish we had a snapshot of that mountain with its fake-volcanic top spewing cloud-smoke.

   We drop down the range. It's no wonder there are exits with beds of gravel for trucks with failed brakes. Having to use one of those with twenty tonnes or more of crusher dust on board behind you would be terrifying.

   Our brakes don't fail, and we're soon off the Tablelands altogether.

   'What a name – Moonbi,' says Tracey.

   'I like it. To me, it sounds romantic.'

   In all honesty, I can't say that about the town itself. It's not quite Bogdanovitch's township in The Last Picture Show, but it's getting there. I think that's why Tracey doesn't like the name.

   We enter the last twenty kilometres or so on the outskirts of Tamworth. The hoardings lack invention and the buildings are strictly utilitarian.

   We don't pass the Golden Guitar, but we pour scorn on it.

   'What a disappointment it is.' (Here I translate into respectable language what Tracey actually said.) 'They could have made something spectacular, with glitz and shiny gold sparkling in the sunshine, and what do they do?'

   'The Beige Guitar in flat paint.'

   'Or Baby-shit Yellow Guitar,' I add helpfully.

   Get your act together and brighten it up, Country Music Festival Committee. G O L D E N. Get it? It's not that hard. It's not a Stradivarius.

   We're here at the clinic. For all my crowing about parking at the door, we have to cross the road and walk a full fifteen metres to enter the reception area. We're early, which is unusual – not that we've ever been late. Our timing's usually been almost to the point of punctiliousness.

   They're running a fraction early too, and before long I'm called in.


Wednesday, July 25, 2012

Show & Tell.1: blossoms, ashes, mistletoe and a guitar

Last week, 19 July it was, Tracey and I got into the car and went to Tamworth for my MRI.

   That's an exciting start, isn't it? We'll see if it improves. Let's go for a change of tense, for no good reason. I'm also going to break the whole thing up into bite-sized pieces even though I take a risk, as some might think it gets a bit dark by the end of the first one. 

   So be it. Don't worry. It'll lighten up, I promise. Stick with it.

   As we get into the car, I notice a remarkable thing. The apricots and nectarines are in bud; a few flowers too. Hey, stone-fruit trees – it's only July. What do you think you're doing?

   It's our wet winter that's led them into thinking spring will arrive early. Maybe it will. Somehow, it pleases me to see the blossoms beginning to show.

   Off we go then, across the railway line to the old highway out of town.

   As we near the airport, we pass the crematorium up to the left, on the hill. The last time we passed this quite agreeable looking place, I felt a shiver up my spine. If you don't understand why, then it doesn't matter; you won't get it anyway. But this time, more composed, I simply muse on the fact that it will be the last place the shell of my body is likely to go.

   I like the idea of cremation, as opposed to being buried deep in Armidale's cold earth. To each his or her own. My sister lies in a beautiful place, amongst the plants and birds she loved. It's right for her. Whatever's left to be released from my body, I want it to go upward towards the stars. To be dispersed by the elements, and set free.

   I don't care much what happens to my ashes. They mean little to me. I tried to think where they might be disposed of. Scattered, if you must. Let's keep the euphemisms for those who can't accept the full reality of a life's journey. They can have their 'resting vessels'. Drop me, respectfully, into a coffin. Death is to be respected.

   I sure as hell don't want my ashes in an urn on anyone's mantel-piece. Not bloody likely.

   I'll admit that over a few break-of-dawn sessions, I thought about it quite a lot, once I got started. Where would I want any last remnant of my mortal self to end up? I thought of my home town; our farm. It's cut up now into hobby farms – six hundred acres of beautiful land, it was, that's now someone else's little selections. 

   The spring in the back paddock is gone, and when it disappeared because of the bores speared down into its heart, extracting its lifeblood, it created for me a separation from the spirit of the land that nothing will fill.

   I left there fifty years ago, when the creek uniting the land brimmed with crystal clear spring-water. Now other people call it home. It is their home and I don't begrudge it, but they're all strangers to me. Cut up into parcels, that land has lost its connection with me.

   Brisbane? Where I spent many happy years? No. If it had to be in that city, scatter them down amongst the reeds by the lake at the university, if the lake is still much as it was forty years ago. I spent happy times by that lake. Sadly, it's unlikely to be like that. And it still wouldn't be my choice.

   Armidale? Where? Much as I love this place and have spent far more than half my life here, I can't think of one area of it where I'd want my ashes scattered. The university? No. It feels so wrong. There's no right spot there. The garden of this house? No. Again, there's no right spot.

   There's only one place that feels right, and that's the little creek at Valla. When a fair tide's running out, stand upstream of the current so the ashes all move away from you at the pace of the flowing water. They'll be taken out to sea by the tide, and that's where I'd like them to be – tiny particles dispersed in an infinity of ocean. The Pacific Ocean.

   Maybe I care more about this than I thought. But let's move on. We haven't even got out of town, and Tamworth is a hundred kms away.


Monday, July 23, 2012

Open letter to a scammer

Dear scammer,

I refer to your email below and would like to make a few comments.

A few facts about the person you are impersonating.
  1. He's one of the finest grammarians in the country. He would have said "quickly" and not used the adjective "fast" as an adverb.
  2. I know he isn't in London.
  3. He would have spelled "program" "programme", and would have been a bit more specific about it.
  4. He would never use "i" even if he were desperate, or possibly had a gun pointing at his head.
  5. Ditto with capitalisation of the first word of the sentence.
  6. He wouldn't have hyphenated "sort-out".
  7. He's an expert on Commonwealth history and, even with a gun at his head, would have died rather than to have referred to the Australian High Commission as "the Embassy".
  8. He knows the difference between commas and full stops.
  9. He's far more resourceful than sending a letter (with undisclosed multiple recipients) to me.
  10. If he hasn't changed his password by now, I'll eat my hat.
  11. I love the way "he" has "limited access to the internet". 

The first time I had one of these letters was 15 years ago. I've had several since.

You are an evil little swine, but we both know that already. I just thought I'd get that in.

Love from Denis.


Sunday, July 22, 2012

A 19 July 2012 look inside my brain

MRI capsule
For those who don't know – and it's something I was very vague on before my brain became the subject of several of them – MRI is Magnetic Image Resonance. It's a way to scan parts of the body invisible from the outside without the dangers of x-rays, and produces far better images for the experts to interpret. They can use the MRI to build a 3D image of the scanned area, and thus can measure with great accuracy different features of it. If MRIs are done over a period of time, then changes can be noted, and also interpreted, if they reveal enough information.

   On 19 July, 2012, I had the first MRI in 18 months. I could have had them more often, but I made the decision not to. I had my reasons and if you aren't in my position then you probably won't understand. As I wrote to a friend in whose medical knowledge and opinion I have great trust:

   In hindsight, it would have been useful to have had 4 or 6 monthly MRIs instead of none in 18 months, but as there was no way I would be likely to change much in attitude to ongoing treatment no matter what an MRI revealed, and because I felt comfortable not knowing, I had no desire to. Sometimes there is as much or more hope and contentment in ignorance as there is in revelation. To have had frequent MRIs made me feel a little like a lab rat under these circumstances, but it came to the point where it would be useful, maybe, for later researchers who had access to my medical records to have more information than I've been giving them.

   And as well, I should have said, there comes a time when we do need to know if something has changed dramatically. It's not just about me.

   When an MRI is finished, the specialist trained in interpreting these images produces a report. In my case, we pick up the images within ten minutes of completing the MRI, but the report takes longer. It goes to my oncologist and is copied to the GP. Our GP is the first to explain to us what he makes of the report, which he did as soon as he got it.

   So that's how it goes.

   The original report was vague, and the reason for this is that the MRI itself was not revealing in any definitive sense about changes to the tumour over the 18 month period.

   This doesn't mean there were no changes. On the contrary, there were ones which could be very significant. Or they could be little more than changes over that period to any live tissue growing where it shouldn't be and that we've been attacking by whatever means possible since we knew about it.

MRI scan slice 19 July 2012
   According to the report, the mass of the original tumour itself doesn't seem to have increased a great deal. There is, according to the report, no great increase in oedema. That surprised me after seeing the scans, because what I saw in the 2D images suggested to me it had – but obviously when a 3D composite can be used to estimate volume fairly accurately in the hands of an expert, it just shows how easily someone untrained can be misled by appearances.

   But there are changes, as I said. There are cystic areas which have developed. Have they grown slowly over a long period, or are they perhaps very recent? Because of my decision not to have more frequent MRIs, we don't know, and there is absolutely no point in speculating. Are they ominous signals, or the sort of changes, not so sinister, that would be bound to happen anyway? No-one knows.

   We do know one thing. I am locked into taking Avastin until it becomes pointless to do so. It seems to have been pivotal in containing the tumour for me for nearly two years, starting at a time when things looked very grim. It will not do so forever, and my body keeps telling me this day by day as I see the physical changes taking place. I can't know about any damage or change to internal organs until that happens.

   Things can change in a flash, but so far they haven't. What we do is to continue. As my Buddhist colleague would always say when asked how he was, "So far, so good."

   Impermanence and change are two elementary Buddhist principles. The day we ignore them is the one they'll get us.

   My good medical friend said regarding this report – and I'm certain it's what the oncologist will say when I see him next:
   I think the only insight I can give is you is that few if any people can give you real insight into what this means.

Friday, July 20, 2012

Asparagus and the God part of it all [Final]

asparagus 1 | asparagus 2

OK, I've been putting this off, for a number of reasons, but I'll have this last go at it and then I've done with it. At least, I think I'll be. I suspect a number of my friends are now so terrified they might say the wrong thing that they won't even write to me, let alone visit me.

It's funny how a little article – and a good one as far as it goes – that's called "What to Tell a Friend Who Has Cancer" is actually about five things not to say. Five, well put, so please go there and see what they are. I've referred to a couple already and don't want to rehash more than necessary.

Just two quick points on her Points 4 and 5 and I'm done.

No 4. Don't cite research you've read online.

This one I don't agree with. To reject everything out of hand is the height of arrogance. I've never minded people pointing me to articles and giving me the chance to consider them, but in many cases the contents simply do not fit my case, even if they seem to make sense in general. Often it's like suggesting how the average Australian should dress.

No 5. Don't suggest new ways to treat the cancer.

I agree, unless you really, really know what you're talking about. The drugs I am on have been finely balanced over a period of thirty months. I've often been given the suggestion to have massive doses of some vitamin or supplement or food type. To do this could hasten my death. But, let me add, I do love fresh asparagus.

  Find one view and another pops up in opposition. Look e.g., at this as a counter to conventional views. Do I know who's right? No. Do you? How? Do you know how it would affect the balance of my prescribed drugs? You suggest these as an alternative to my current treatment? Hmmm.

  So that leaves me with just one other thing I want to tackle, from the 14 mentioned in the other article.

The God part of it.

"Don't cry over your diagnosis, because God only gives us what we can handle."

Really? What gives you the right to instruct me on what God "gives" us?

  In my work teaching comparative religions, and Asian cultural history, it was my duty as an academic for forty years to find out as much as I could on what "God" means to Hindus, Buddhists of all brands, Jains, Jews, Christians, Confucians, Taoists, Muslims, Parsees, Sikhs, atheists, agnostics and non-theists. I avoided the more recent sects and cults. Most of them give me the shivers.

  What I learned from comparative religions is that I wouldn't dare try to tell anyone what God wants, and it's egregiously presumptuous for any human being to speak on God's behalf – even backed by a text they believe with all their heart is final and absolute truth.

  Hinduism has a wonderful way of approaching God, if you have a dilemma. I know most people in the west have this vision of Hinduism as lots of gods and pilgrimages and gaudy images and temples. That's only on the surface. Hinduism over millennia has absorbed every known way of looking at Godhead; all sorts of theisms through to no theism at all. This isn't the place to discuss it.

  All I'm saying is that in Hinduism you can view the idea of God through every window. To Hindu philosophy, Judaism, Christianity and Islam are forms of yoga – bhakti yoga, to be precise. You'll see Jesus as avatar in the Hindu pantheon, along with countless others. Accepted, not just tolerated.

  If you want to have the notion of a personal God, that's fine with Hinduism. That's your way. That's your truth. All roads lead to the top of the mountain. Ultimately.

  Hinduism also accepts that the purest philosophical form of Godhead is as an Ultimate Truth or Reality, beyond a personal God.

  Science shows us that reality is a elusive thing. It also shows us that we have little idea of the nature of this world and what it's made of. It has dimensions that we can only theorise about. The enchantment of string theory and the reported discovery of the sadly misnamed 'God particle', the Higgs boson, drive this home. So to me it's a foolish person who thinks they have all the answers, especially about God.

  Religion has many comforts, but it has inexplicable paradoxes. If someone makes a statement about God giving us only what we can handle, I thank them for trying to comfort me, but I find it ridiculous. For if God gives me only what I can handle, then explain to me how the child with leukaemia, or one who was a happy eight-year-old one minute and now has her body half shattered and burnt and lives disfigured and in agony till the day she dies has been given by God what she can handle.

  You aren't allowed to have one without the other. Not in my book.

  Of course, I am caught in the paradox of my own logic. If I say we don't understand God because science and reason cannot tell us the nature of reality then I have to admit to the possibility of an eternally compassionate God who allows the child to be tortured and the innocent to suffer horribly.

  This admission is why I have said before that I gladly accept the heartfelt prayers of well-wishers, just as long as that is not just a token exercise. If God is present then it is through the action of carers, family, friends, medical staff, researchers, [shall I go on?] so don't replace them in the acknowledgment list by something more esoteric. Give them their due.

  My vision of Godhead is far broader than anything envisaged by a personal deity. I can't conceive of a heaven as described by the fundies because I don't understand the plumbing [hyperbole, OK?], or what I'd do up there for all eternity. I can't believe that any compassionate God is going to let His creatures suffer forever the tortures of Hell with no hope of redemption. How could I be happy in Heaven [naturally I have a ticket] knowing that my best friends are suffering the torments of Hell for all eternity?

  It doesn't sit well with me, though I accept that everyone else has their view. If you want to know how I feel, then you're going to have to understand Taoism, or what I understand to be the original philosophy of Buddhism stripped of its complications due to accommodating reincarnation, or a monistic view as in the Vedanta of Hinduism, all of which make sense to me. They satisfy me completely as to my relationship with the entire cosmos and its infinite mysteries.

  As usual, I've said too little and too much. So be it. Maybe at least I've pointed my finger at the moon, to steal a zen phrase.

I tried explaining some Eastern religious concepts in various blog bits such as on Taoism [or Daoism if you prefer] Making sense using Eastern logic and Illusion, truth and reality (Part 1)

Tuesday, July 17, 2012

The curse of the white toe

My uggs, it must be said, have had a lot of use in the past three years. Too much, you might say, but we Love in a Cold Climate, as Dame Judi would agree if she chose to live in Armidale. Also, I don't get out all that much, specially in the depths of winter. The uggs were black, bought by my discerning wife from a specialist place, and the wool lining was excellent. I'm not a person who sweats much, so for years my bare dry feet slid into them luxuriously. So good. So warm and comfortable. Never get cheap ones.

   But in recent years, the wool has compressed and the level of comfort has fallen. Sadly, I became aware of a tiny hole developing where there was most pressure from the right big toe nail; a hole which increased in size as the months – yea, the years – went by. Occasionally a visitor called, and there I would be, half my big toenail visible against the black of the shoe. It's not a pretty sight, as you can see from my illustration. I'm very proud of that toe drawing, so appreciate it. Hell, it took me half the morning.

   "Maybe I could paint my big toe-nail black," I said to Tracey.

   She failed to show any enthusiasm for the idea, but I think she does have some black nail polish. In any case, I abandoned the option. After all, I'd have to paint a fair part of the whole top of the toe, and feared that should I be whisked suddenly into hospital for some reason, they might think I had leprosy or severe frostbite or had been smoking forty a day, and amputate without further ado.

   It occurred to me not long ago that the shoe fabric had stretched to the point where it could be time to wear a pair of socks inside the uggs. As it happened, the first pair of socks I tried were black. This isn't surprising given that practically all my socks are black.

   I suppose I should add that putting on any pair of socks is quite a challenge to me. My right arm quickly develops a tremor even when it's working at its best, and has little strength. I have to sit down on the bed, draw the foot to be socked as far up on the other leg as possible, and with luck and more effort than you would be likely to expect, the sock might just go on, with the heel in the right place. A variation on Murphy's Law usually places the heel of the sock at 180 degrees to where it should be, i.e., on top of the foot, but it sometimes goes right first time.

   The right foot is trickier because it won't stay up on the left knee by itself. A third hand would be ummm... handy.

   Anyway, I got the socks on, and then the uggs. And wullah! as smooth-talking French-speaking Johnny says - my white but now besocked sticking-out toenail became invisible, as did the hole itself. Almost. This pleased me.

   So, this morning, I got out a fresh pair of socks and carried out my usual battle with each to get them on. Then I had the next struggle, namely, to put on the uggs. This involves a peculiar form of gymnastics akin to wrestling with two fairy penguins who are engaged in a battle with my besocked feet, in both vertical and horizontal positions on the bed, but don't push that analogy too far. Please.

   I stood up. Only then did I realise something. The heels of these socks were bright orange in colour. Well, I knew that already. That didn't matter. But I had forgotten one detail, seemingly irrelevant in my battle to get the socks on.

   The tips of the socks were very, very orange. As was my vibrantly orange big toe, now poking jauntily through the hole in my uggs.

   **le sigh** Some days, you just can't win.

Wednesday, July 11, 2012

Just for fun

Someone suggested that instead of naming exciting films, we should come up with some boring ones instead, based on already existing movies.

These were the ones that came immediately to my fevered brain:
The World's Slowest Indian
Doggie Creek
What I Haven't Written
To Slightly Injure A Mockingbird
Schindler's Shopping List
Kindly People
The Triangle Teacher
Muriel's Funeral
Monty Python And The Holy Grape
Really Nice Girls
Joseph And The Pin-Striped Dreamcoat
The Hitchhiker's Guide To Town Hall Station
The Small Recapture
The Fully-Clothed Monty
Don's Wake
The Devil Wears Sensible Shoes
The Mouse Hunter
3.75 Miles From Casablanca
Brokefinger Mountain
The Lavenders Brothers
Absolutely Nothing About Mary
Men in Beige
Yes, normal service will be resumed as soon as possible. Or maybe you prefer the boring movies!

Friday, July 6, 2012

Asparagus and the God part of it all

As with the first part of this commentary on things not to say to people with very serious medical conditions, I'll refer you to the original brief article as a courtesy to the author, instead of gutting it. 
I decided to mention only things that relate most directly to what I've experienced. Some of the others related to women's experience of cancer, especially breast cancer, are best explained by women. 
So, I've chosen to write about just two. Please go to the original site for the others. They're pretty awful things to say – so thoughtless I can barely believe anyone would.
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"You won't need radiation if you just eat asparagus," – said to Carla Zambell

"You shouldn't go through chemo because it's too dangerous. You should stick to vitamins and herbs instead," – said to Laura Carpenter, who survived non-Hodgkins lymphoma

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When you get a diagnosis like mine, and are told your life expectancy is three months without treatment, you face an immediate decision. You don't have time to experiment with some alternative treatment that has not gone through rigorous scientific testing that shows it stands up to traditional methods.

   Remember Steve Jobs, the Apple man?  Architect of the most powerful company in world history. His amazing creations were based on taking a chance, going on an extraordinary instinct. Why not do the same when he was diagnosed with terminal cancer? Why not try alternative methods to the nastiness of radiotherapy and chemotherapy?

   Because it almost certainly shortened his life by months or possibly years, that's why. He faffed around with alternatives, finally having to admit that they were useless as primary treatment, and regretting not going down the path a scientific evaluation of options would have told him to immediately.

   The one time his instinct let him down was over the most important thing in his world.

   In cases like mine, there is no time to experiment with homespun remedies. If you want to have a try with them when traditional methods fail you, go ahead. Some cancers do retreat, often for no apparent reason. Some cancers may well be restricted by the use of a complement to regular treatment by diet and non-invasive methods – that's why I am a fan of anti-angiogenic foods for my condition.

   This isn't to say that all traditional methods work in all cases. I suspect some of my treatment was not very effective, but that's a guess. It's only with the benefit of hindsight that I can say that, and even then, how do I really know? I couldn't afford not to do things the way we did, anyway.

   When this 'advice' about rejecting a traditional method comes from a person who has not used it themselves to recover from my form of cancer, pardon me for being sceptical. I don't have time to experiment in the shortened time I have left. I am not keen on someone tinkering with my hopes, naivety and fears, however good their intentions.

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Ah. It looks like I will need to deal with the God part of this in another episode. This looks like a good place to stop. But if you haven't read quite enough on this for one day, here's a brief but perfect comment on the first episode that is beautifully put.

Monday, July 2, 2012

Things not to say to someone when they're ill (1)

I've been here before, but I'm revisiting this subject, in two parts.

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I'd like to quote every line of this article here on my blob, but that's not fair on the author, whose livelihood may depend on the number of hits her articles get. So you must go to the site and read it. It's short, well written, and to the point. If you don't read it in conjunction with mine, then you'll miss important things.

But... I don't agree with it all; the "never, ever" – which is why I've written this, just as I wrote an earlier blog entry inspired by what another article said and challenging a number of views about what not to say. My take on it got picked up and circulated world-wide.

Usually I do reply, but things can go pear-shaped and your email or enquiry gets lost amidst my email clutter. Memory lapses, especially relating to very recent things, are frequent for me, and even though I've marked some emails with REPLY, a week and a batch of new ones drops it out of consciousness. Then I find your email, weeks old, I am left with the guilt of knowing that you expected me to reply and I haven't, especially when X has hammered me with 50 questions, most of which are answered on the segment of the blog.

I don't expect you to know or remember this web address but don't get uppity if I direct you there.

1. "I feel so sorry for you"

I'm not as sensitive about this as Deborah obviously is, but as she says, no way do I want to be an object of pity either.

2. "If anyone can beat this, it's you"

It's well meant, and a huge compliment in one way, but some have no idea the way it makes me feel if I am going downhill - which, bit by bit, I am, if we go by the objective evidence. Are you expecting me to conquer this thing that no-one in the world has overcome before? Pardon me if I "fail". I'll do better next time if I can. I'll try harder, I promise.

3. "You're looking well"

If it's not meant sincerely, or as a weak attempt to ginger an ill person up when they feel rotten, it's worse than saying nothing about how they look.

But here Deborah and I might disagree, but for one good reason in my case - I do actually look better in the face than for years, with more sleep and the right disposition to accept what's happening. I know people are telling the truth when they say that to me; they aren't simply being inanely hearty. So I don't get offended by that. I believe them! So far anyway.

But if X says that, X has seen me only sitting in a comfortable chair. Watch me get about. The image might collapse.

4. "You're looking terrible"

No-one's ever said that to me, but if they are a good enough friend to be able to say it in a purposeful way, I wouldn't mind... at least I don't think so. Maybe I'll wait and see.

Come to think of it, what good purpose would it serve? If I were kidding myself and thought I looked terrific, how would it help to be told otherwise? If it's true and I do look bad, I daresay I'll already know. Safest is, just don't say that at all.

5. "Let me know the results"

It's an expression of concern, and well meant, but yes, it can put the pressure on. Deborah sums it up beautifully in her response. Don't miss it.

6. "Whatever I can do to help"

Again, I understand completely that people say this because they're reassuring us that they care, and they do. But what helps is to suggest things exactly like Deborah mentions; or, as many people do, just turn up with them. If you're not sure, ring first, like Chrissie: "I just baked an extra <xxxx> pie - can I drop it round?"

You bet you can, you beautiful person....

7. "Oh, no, your worries are unfounded"

Really? Here I was, wasting all this angst for nothing!

Funnily enough, Deborah mentioned how she was reacting to the prospect of losing her hair. I knew I had enough vanity to care, but I didn't realise just how badly I would. I'm a bloke. Bald is beautiful. It is, on some people, but when it falls out in clumps, that feels different to making some sort of choice about what you do as the hairline recedes naturally. My hair's come back, more or less. As long as you view it from the right angle! But for a woman, who rarely expects to lose her hair in her lifetime, it must be worse.

I am also vain about the fact that in two years of steroids, I've put on 13 kgs. Vain and concerned that it is a lot harder to get about carrying that extra weight on buckling knees, and a bloody sight more dangerous when I fall.

8. "What does chemotherapy [for example] feel like?"

This sort of question doesn't bother me, even though I can't answer that specific one in a meaningful way to anyone who's never been through it. If people are curious, that's OK. They can ask me anything. Sometimes I can answer in a way that might make sense. Naturally I reserve the right not to answer if it's too personal. 

Deborah says she wants only to chat about other stuff. Well, that's fine, but sometimes I go through an entire chat and the person gets up to go, and they haven't asked me how I'm feeling. Don't avoid the subject altogether as if it's totally taboo.

There are sometimes experiences I've had that I do want to share, so my visitor understands where I'm at. I don't want to bore people for the entire time with the intimate details of my condition, but 50-50 would be nice. I don't need to be entertained. I've got more entertainment available than you can poke a stick at.

9. "I really must see you"

It's worth reading very carefully what Deborah wrote here. Be sure you are clear in your motives for doing so and don't come - ever - if you are doing it out of a sense of duty. Write a note instead.

Being visited is a big thing for me – even more so if people have travelled long distances to do so. That can put incredible pressure on me.

10. "I'm so terribly upset about your condition"

People are. I am. All the family are. It's superfluous but it often slips out because it's how you feel. You're my friend. If you aren't upset, then it would be strange. "How can I live without you" is all about you. It's not fair to hit me with guilt about your loss when I'm gone. You might be amazed at how quickly you'll adapt and move on. At least I hope you've got the sense to and not to dwell on what can't be, because I don't dwell on it more than I need to when people I care about die. Sure, you better miss me for a little while, or I'll be offended, but don't wallow in self-pity. Get on with living.

Lastly - and I've said this elsewhere - take on board the most important paragraph of the whole thing. The last one. I'll repeat two sentences here:

Deborah's admitted it, and I have to too. This is all I'll say about it: if you love/care for me, then it doesn't matter what "terrible" thing you might say or have said. But these things matter hugely to others in circumstances like mine, so it's surely worth knowing what they may think and feel.

Next time I'll write on some worse things that people have said – but this time, including some that can only be thought of as pure arrogance and ignorance.