The hills are alive

Still can't drive. But I can hike.

I'm making long overdue walk happen.
Can't afford to, but can't afford not to.

Rough route: Yosemite to Donner Lake(ish) , 20(ish) days.

Fly to SF Aug 25.

Wildflowers and redwoods, diamond and burgundy tarns and that joyous Ansel Adams rounded granite.
First three days may well be cartwheeled the way I'm feeling.
A bit over a year since the shake-up, there's much to celebrate. Sierra Nevadas are one of the grandest places on earth to reflect, and sing.

- Pic isn't Pacific Crest (John Muir trail negs from 93 are 'archived' somewhere in my shed, a far more risky trip in there than any above-the-treeline foray!) it's from the Rockies - Grand Teton NP more specifically, 04.

The clinical summary ...

This gets the ball rolling to get life back on track ... it's also a clinical view of the past 13 months, stripped of the emotional rants, life questions and pleas for more time by the sea ...

A fireside Guinness, with a 'stable' tissue mass

'Stable'. Again.

Not me, it.

It's not getting smaller, but it's not getting noticeably bigger.

Neurologist is writing his assessment to VicRoads - which kickstarts the process of lobbying to get my licence back. The small 'vague out' TLE episodes don't bother him - and I've been driving 19 years with about a half dozen of them a day and a perfect driving record. He's still concerned about me forgetting the Tegretol or by some other manner getting a 'more significant' seizure behind the wheel. But it's been a year. And I haven't fallen down again.

Time to get life back on track.

Neuro is still thinking some sort of chronic inflammation at the root of it all. But seems to have moved out of diagnosis mode and into monitor/manage mode. "We'll see in another three months, maybe another MRI in a year, or perhaps 6 months."

To me there's not enough being asked or said of 1991 - he's drawn the direct link between 19 years of epilepsy and this mass of tissue. SO, what else might have happened in 6 months of Asian wanderings (other than the tapeworm theory and various other parasites since ruled out), what about the original Lariam hypothesis?

Lots of medium term/longer term questions like, if it's taken 19 years to get to about 20 mm, that's potentially another 10mm by my 50th, and that's surely a size to seriously mess with functioning ... they all remain unanswered. There is no diagnosis, and I've got to live with that for probably quite a bit longer.

Anyway - it's Friday night. A couple of weeks of serious stress are starting to subside (I had steeled myself for the 'getting bigger' result), I don't have to go back to hospital until August ... and a fireside Guinness with some smiley company awaits.

Wouldn't be a true B Grade drama if we didn't drag it out for another year or two would it?

Waiting

Waiting


Waiting


There's something Machiavellian about an 18 day wait to receive the results of the eight brain scans taken in the MRI session last month.

Something very daunting about those machines - like sticking your head in a big bread maker/microwave hybrid. Then getting your head strapped and locked in place by two or three mask things - like a hockey goal keeper held down by his mask. But, once inside and perhaps because of or despite the cacophony of bizarre noises, I again fell asleep at times through the 40 minutes of scanning - maybe a defence mechanism.

But the hurt for me this time was seeing the family of a two year-old trying to go through the same thing - a two year-old not long for this world by the look in the eyes. Inconsolable very sick child in the big bread maker, strapped down by the head. It must be an evil machine for children to cope with. Mother of child hysterical in the corridor, the dad doing his best for both. Witnessing the paediatrics is the heart wrenching part of hospital visits. Kids and brain tumours - just isn't fair.

I find out if the mass is getting smaller, 'stable' or growing on Friday.

The great ocean walk is calling me whatever the outcome. Alcohol didn't help last Tuesday week (ouch), so a few days ambling alongside the Southern Ocean might, and I might have a few obscenities to scream from a cliff top. (She's a good listener).

Got to meet John Francis at the Healthy Parks Healthy People congress. Gave me great spark for taking on another stroll soon. Gotta walk.

http://www.theartofwalking.com.au/welcome/

planning for winter

View of the girls filling comb 7.45 this morning. Early autumn, they're busy planning for the winter.

My photo exhibition opens at Noel's Gallery tonight for a bit of fun:
Saltwater and Orchids (with thanks to Emma)

Neurologist visit last week - first in 2.5 months.
Nada. Rien. Fucking nothing.
No new ideas. No new plans.
Blood test. Another MRI in April.

Still experiencing TLE vague out most mornings within 10 minutes of waking - and the occasional other one, usually late afternoon. Much better than the half dozen or so I was having a year ago, and severity much less so. Now on 800mg of Tegretol a day in four 200mg controlled release capsules, two in the morning, two at night. No real side effects of the tegretol really, except that I'm conscious of looking stoned for the first half the day sometimes - an issue raised with the neuro. Not his department apparently.

Unless you're 'Category 1' and about to peg out in the next month these guys aren't in much of a hurry.

At the patient end the not knowing doesn't get a lot easier - whether this thing's growing at a critical rate or a matter of (how many?) years, answers are still key to a good night's sleep.

Key too is fun - and a night of guitars, sticking a few prints on canvas on the walls and surrounded by good friends and family oughta help through this week.

The invite is attached.

Worker bees have six weeks...

Watching a doco recently on the two survivors from the Excalibur yachting tragedy: there's this syndrome they talked about, having survived the sea, their next couple of years was all about doing everything NOW.

I guess I'm feeling a bit of that six months down the track - do it NOW ... no NOW!!!!

... because we don't know how long we've got. Be it Pacific Ocean storm, a gob in the head, truck on a bend ... gone.

So, anyway, I'm a beekeeper now. I've talked about it for a couple of years, coming out of brain surgery with the NOW!! syndrome has made it a reality.

Jason's son Finn took some pics from a safe distance while we stirred up our 40,000 ladies the other day - if the Homer Simpson at his nuclear power station cartoon imagery isn't funny enough, two blokes in those suits trying to get under highly tensioned fence wire is even better.

EEG results abnormal as Neurologist suspected: he's now drawn a direct line between this thing in my scone and 19 years of Temporal Lobe Epilepsy. That's good - perhaps - in that it maybe means it took 19 years to be 20mm in size. Perhaps. Maybe.

His POSSIBLE diagnosis is idiopathic hypertrophic pachymeningitis. Impressive sounding - feels like you're getting value for money when there's 15 syllables involved and a good measure of Latin.

I'm getting on with my beekeeping ... and the launch of my creative hub ... and managing my holiday house ... and bike riding ...swimming... planning lots and lots and lots of hiking... NOW!!!!!!

Recovery tunes

A spring in the step helped along by sunshine and tunes and orchid season.
A list of some stuff I've been listening to these past couple of months: You'll probably pick the 'recovery mode/getting stronger' thematics among some of the lyrics, and probably a hint of the coming to grips with mortality stuff ... I left out The Rocky Theme.

Astair Matt Costa
Red Sails Custom Kings
The Captain And The Hourglass Laura Marling
Rose Pickles Custom Kings
Middle of the Hill Josh Pyke
Spin My Thread Custom Kings
Forward Joe Neptune
Lullaby Jack Johnson
Behind The Moon Matt Costa
I Shall See My Love No More Joe Neptune
Wondering Where The Lions Are Donavon Frankenreiter
Forever Jesse Younan
Swimming in the Darkness Custom Kings
Yellow Taxi Matt Costa
Sew My Name Josh Pyke
Sweet Rose Matt Costa


You Don’t Scare Me Josh Pyke
Scattered Black And Whites Elbow
Light Inside Of You Andrew Kidman
Where Two Oceans Meet Josh Pyke
Johannah Mishka
Summer’s Not The Same Without You James Yorkston
It Isn’t Me Mat McHugh
Tap At My Window Laura Marling
Tortoise Regrets Hare James Yorkston
Beautiful Day Donavon Frankenreiter
Reasons Are All I Have Left Art Of Fighting
Don’t Think Twice, It’s Alright Donavon Frankenreiter
My Other Dream of You Joe Neptune
You’ll Change Machine Translations
Just Go Indigo Joe Neptune
Old Fashioned Morphine Jolie Holland