Friday, August 31, 2018


I don't suppose all sagas start off as sagas. I expect some of them begin

“This morning I woke up and proceeded to struggle with my trousers.”
and end up 200,000 words later with the protagonist in a large pot being danced around by cannibals and you put the book down and sigh because you're only two thirds of the way through and you mutter, “Saga”

So it it with me, cept it's doctors not cannibals.
I went home for a night as an experiment over a week ago and returned to the hospital the next day confident I'd probably be discharged the following morning.
A doctor visited and breezily informed me that the latest blood test had showed an uptick in my white cells and they were just going to keep an eye on that over the next 24 hours.
I was casual. After all was I not just an exceptional healing unit overall?
Then the fever hit and the exhaustion rolled in and I spent the next week in bed as doctors tried to find the source of infection and I went back to nil by mouth in case food had leaked into my chest cavity via inadequate stitching in the children's' purse I now call a stomach.

So a week and a bit later I'm sitting up in bed writing this and my surgeon walks in and asks me to give him a smile. He has no way of knowing. I stare at him blankly and state. 'That's not my bag man.”

He proceeds to tell me of teams of radiologists and himself pouring over the CT scan I'd had done this morning looking for a leak in the minutest forensic detail and where there was once one half of them say there now isn't and half of them say there's the faintest whisper of one left.

I mumble something about schroeder's esophagus and he doesn't double over with laughter so it's obvious I'm still very unwell.

But feel better that I have for the previous week, which was sick and tired and a little depressed with the whole isolated, uncomfortable, mammoth physical restructuring exercise.

However certain clouds have parted and that's as far as I'll go with that.
The world still owes me a living.

Thursday, August 16, 2018

third week recovery from misdiagnosed terminal cancer

I'm doing unnaturally well. Today is 3 weeks of recovery. First two weeks were a shellshocked pain pocked post operational ketamine fueled multiverse of painful solitude punctuated by nurses and tasks and family visits. An omniplex which can be defined as a realm of simultaneous chaos and understanding.

Ketamine is useful in that it dismantles not only the highways between your pain source and your brain but dismantles your perception of your bedrock reality such that you have to improvisation-ally rebuild it. It's like having to construct a street show in real time on the fly after being hit by a truck or some mythical thing with a powerful tail.

There were times where I had a stoic belief that I was not entirely housed in a hospital but a hybrid of a hospital and a south east asian village built on a mat of quartered macadamia nuts nurtured by elders and I was aware of the byzantine social and cultural intricacies by which the community was both stable and evolving and in some part actually fueling the hospital. I'd overhear the villagers talking and make my conclusions. Sometimes they talked about me. They mentioned at one point I'd make a good prospect for the south African market. I felt special.

At night when I pushed the buzzer because of pain or some other need it would appear that the nurses dutifully but with the barest sense of reluctance would appear from a spiral staircase under a trapdoor in the floor at the base of my bed and that I wasn't in a room but more a hallway between these two integrated worlds. It all made a lot of sense at the time.
That was then this is now.

After day 12 things picked up, my core reasserted itself, I could sit up by myself and a few days later could lie down unaided and within a couple of days I gained a lot of physical strength and mobility. The doc had always been dour, in intensive care the day after he was all, "Five major things can go wrong in the first five days. " after 5 days it was "Not out of the woods yet." but by day 15ish he came in and told me the histology [cellular analysis of whatever they've removed from you] was that he'd taken 35 lymph nodes from around the site and none of them had shown any indications of cancer and also the tumour had not gone through the wall of my esophagus and was just sitting on it so the likelihood of it having travelled anywhere were essentially nil. Additionally my recovery and lack of major complications, [I'd had a short lung infection in the lung they collapsed for the op but that healed with antibiotics within days] has so far had me the fastest healing and most positive prognosis out of any patient he's done this operation on. So there's that. Still nil by mouth though. Eating starts in 3 days and I'm being fed 16 hours a day by tube.

But fuck it I had 2 pieces of hard caramel candy, 3 sips of sugared latte and a cig yesterday when they unhooked me and gave me the afternoon off, cos Iyam what Iyam
I have a huge learning curve ahead

Resets and relearns and vit b injections every couple of months. Will go home next week if tomorrows scan is progressive as all before have been, and be fed 8 hours overnight and experiment with what my body will deal with during the days. So it will be reduced but essentially what I've been experimenting with my whole life.
I'm fed for 16 hours via tube about 2300 cals overnight from 6pm til 10am.
Today they let me have sugared black coffee, they said no milk but I bumped into a cow and one thing led to another and I spent 3 hours drinking a small strong latte so there.
I get a final scan through the big donut downstairs tomorrow I had one this last monday and they are trying new methods out on me. They get me to drink the indicator minutes before the scan which is a new procedure and on monday they asked if I could spin round one revolution on the hydraulic feeding stretcher that glides you through the CT Scanner so the fluid could coat what they wanted to look at and perhaps walk around a little also.

Given that a week earlier I had to be helped on and off my bed and onto the thing and this week they were asking for gymnastics I gave them a wry glance and mentioned I'd worked in circus but even so were they aware of what they were asking? Negotiated that yes if they lowered the narrow thing I'd give it a shot then I did rotate from back to side to hands and knees then back to back again. I then got to my feet walked the length of the scanning room did a full 360 pirouette on the ball of one foot, returned, lay down and said 'Lets do this thing.'
Bottom line I'm as good as cancer free before even the next poss stage of clean-up chemo and healing well but life will not be the same.
Hoping to write more and make a name for reviewing street fests from the bottom up so to speak being one of the tribe but that's future days.
Grateful for all the wellwishing and support you've all lent. It means everything.

Wednesday, August 8, 2018

I need slippers, I am walking again and the hospital requires it.

Please world, I have begun walking again. I need these slippers for the hospital........

Two Weeks Pass

Two weeks pass.
Nine hour operation, imagine nine hours spent slyly penetrating a Christmas cracker from both ends to remove the paper hat leaving little evidence but extensive bruising an innumerable stitches and stables.
Imagine a tree of functioning feeders each designed to keep a part of you functioning under the duress your bodies been placed, all working except for the pain management one which says it's working but isn't.
Imagine on the scale of 1 to 10 you being at 10 for 45 minutes wishing nothing more than to be able to be turned off and the other machines all designed to keep it steady and the staff trusting of their equipment til they find their flaw that 45 mins later.
Imagine shallow labored breathing and the lonliness .
Feeling much better today,just had 35 metal staples removed from holes and slashes front and back by a nurse who rightly guessed it would be made easier for me if I talked about myself.

and in again.


All things to all people...Letters to a Clown

Two interpretations of my show from the same Perth audience.

"Letter to a Clown

Seldom do I go into the city, but this week I came in on Monday and was back on Tuesday—I met a bright Clown in a dark laneway that needed the sort of light you were able to shed. I wondered who you were behind your mask. You drew a crowd around you like a magnet.
Do you know what you did for us?
I shall count some of the ways.
You awaken the Discerner in us. You show us aspects of ourselves so that we can dare to look; then dare we to act upon. You show us the roles we have imposed like cloaks covering ourselves and shake them off, for life is just a game. Uncovering us you show us “to be”. You gather us and draw us together through this laughter creating Unity of the Family of Man….. and as I look through the crowd, silently gathering my gift of words for you, I see compassion, joy, shining merriment, some silently suppressed, but expressed in the eyes of those who have perhaps too serious a life and hear the innocent open laughter of enjoyment in the sound of young children voices and in the youthful, I wonder if you realise how powerful your play is in changing us quietly from within. Quiet audiences, often seemingly unresponsive, can be the best.
Did you know that everyone was laughing at something different at the same time but something that was in them too? Complex, powerful, intricate this act. What impact to connect us up in still concentration as you, clever psychologist, become a mirror for each.
Deep Clown, even when you wash the windows with small, round movements it humours and relaxes and lulls us. Not for long! Like the suddenness of your own swift mind, the long movements of effort follow, giving instead into the mercurial and quicksilver changes of your ingenious and humorous acting.
I saw a Clown of Hearts and heard the quietness coming out of the audience the next day, all gathered around you, and the soft, deepening laughter rippling out of the sun of its eyes as you drew, in one swift act of affectionate comedy, the Police on their city beat in the paddy van, to the people.
Before your audience walks away, lighter or brighter or deeper in thoughts, reflecting, probing towards the Light of Life perhaps.
You took off your hat, green haired man, old, old Soul and bowed to your audience. I noticed two shadows on your face. They came down from your eyes across your cheeks. Later, when I passed the darkening laneway with all it’s dreams still whispering from the undying souls of the never-ending hopes, faiths and loves of your audience, I looked up and there, suspended in the darkness was a branch of light filled, golden flowers that you had forgotten to take; or had you? In that bright , simple spray I saw, as I did in the shadows under your eyes, Your Essence, and I am still weeping for what you evoke in us.
Your Essence, like the flowers and Your Efforts are Love,
Dear Gentle Clown."


Doors open, doors close, dogs avoid escalators.

Well I had my last pre-op meeting with both the surgeon and the head anesthetist yesterday. They have opted for the 'all you can cut' menu where they go in via the stomach area and also take a chunk out of a rib so they don't have to break it and go in that way too after deflating a lung to give them extra wiggle room.
My list of demands were fentynal as I've heard good things about it. The catheter put in after the general anesthetic cos I'm detail orientated that way and I'd like to wake up on a bear skin rug in front of an open fire in the intensive care ward please.
I then slyly inferred there would be chocolate in it for them if they made an effort.
Personally I am astonished by my bravery and sophistication in overcoming my fight or flight impulses to the degree that I will voluntarily be entering a building in a few days knowing I'll be led into a room where people will attack me with knives.

poss book cover, option one,