Monthly Archives: February 2012

Almost WONDERFUL

Last Tuesday I had my regular assessment meeting at the Cancer Unit prior to starting my fifth cycle of chemo. It’s become quite routine now. It’s like part of your Frumusete Sanatate. We pitch up at the reception desk where the relentlessly cheerful Mrs. Buckwheat checks me off on her list and hands me a clipboard with a Biro attached by a string umbilical, and form CR2666.

Jo takes a seat in the waiting area and I kick off my shoes and step up onto the electronic scales. 84kg’s. I’ve put on weight. I note it down in the box on the form.

CR2666 is an interesting document. It’s also known as The Quality Of Life Assessment Form.

It’s pink naturally.

Some genius graphic designer gave it a nanoseconds’ consideration and naturally assumed that I would find this calming and friendly. That I would be soothed and reassured by it’s comely hue and feel positively disposed toward spending five never-to-be-repeated minutes of my rapidly evaporating life answering its questions.

“One of the important aspects of the assess and follow-up clinics, is to find out whether the treatments are working, and the affect (sic) the treatment has on the patient’s life. This form, filled out by you the patient, gives the doctor a good indication of how you are feeling.”

He could just ask “How are you feeling?”

At the top of the form, under the white sticker with my name, patient number and bar code (Yes I have my own bar code), there is a matrix of attributes and possible responses arranged from good to bad. For example Energy: normal / slightly reduced / tired / exhausted, or Mood: normal / a bit low / depressed / miserable and Pain: none / mid / moderate / severe.

Next is the most interesting and perplexing part. The Overall Quality of Life line. This tales the form of a single black line that traverses the entire width of the page. At the left end is printed one word. TERRIBLE. at the opposite end another word. WONDERFUL. My task this afternoon is to mark with an X the point on the line which reflects my current state of mind.

Now. The temptation is to make my mark as close to the WONDERFUL end as possible, but that would only serve to illustrate that I haven’t really grasped the true gravity of my situation, or just that I am seriously over-medicated. To stray anywhere into the left hand side is to prematurely admit defeat and is therefore philosophically unacceptable. One afternoon a few months ago I did watch a thin young asian woman put her cross over the word TERRIBLE with a trembling hand. Then she underlined it three times. It broke my heart. This only leaves a small window of opportunity about three-quarters of the way along the like, which is where I choose to plant my flag. Optimistic but realistic. Positive without being naive.

buoyed by the positive affirmation of the QOL line, I move on to the altogether more practical and sinister PAIN REGIME. The choices here are none, occasional, regular, non-morphine, and the final chilling option, morphine. After morphine, there is nowhere else to go.I know this from watching my dad’s slow morphine fueled slide into babeling dementia. Morphine takes away the pain. But it takes away just about everything else too. Including dignity and tha ability to say goodbye when the time comes. It’s an expensive ticket. And it’s striclty one way.

I’m not frightened of dying. But I am afraid if pain. I circle none emphatically and move on.

The last question is “How do you feel since your last treatment?” My choices here are: much better / a little better / the same / a bit worse / much worse.  This will be the fifth time I’ve filled out this form. So far i have circled the same on each occasion. Maybe not entirely truthfully, some weeks are better than others, but if I feel sick it’s more to do with the treatment than the cancer. My big secret fear is that if “they” think I’m in decline, on the slide, not responding in acordance with their expectations, they may give up on me.

What if they decide no amount of medications or treatments are working on my cancer? What if they decide I am a hopeless case and decide to move on to other patients who have answered the same form as expected? What if I lose out my only chance of hope?

And that really would be TERRIBLE.

 

Of Islands and Granfalloons

Cartoon

Now that I come to think about it. It was inevitable that I would wind up living on an island. Not necessarily this island. But some island. As inevitable as the results of using Hair MegaSpray regularly.

I was born by the sea in the West-Country of England, and apart from my student years in London, I have never lived more than a stones throw from the shore. I read somewhere long ago that the further inland from the ocean one travels, the more uncivilised the world becomes. I think I believe that, although the residents of Mogadishu or beach-front Gaza may beg to differ.

Islands have always held a fascination for me. I’ve visited and explored quite a few, ‘though not nearly enough. In Scotland the craggy black gabro peaks, pristine beaches and aching loneliness of the Inner Hebredean archipelago – Skye, Eigg, Rhum, and Islay among them . The beautiful island of Arran where I climbed the Sleeping Warrior to the summit of GoatFell to look out over the  Kintyre peninsular and the Firth of Clyde and was eaten almost to the bone by flies and sheep tics. More recently I travelled to Norfolk island, a vanishingly small outcrop of rock, history and tough humanity barely a couple of hundred feet above the crashing waves of the South Pacific a thousand miles from anywhere at all and home to most of the descendants of the Bounty mutineers.

It’s the notion of a closed, self-sustaining system that attracts me. Cosmologists will tell you – if you can stay awake long enough – that the universe, or more accurately space-time is curved back on itself by it’s own weight, it is in three dimensions (four if you include time), what a paper mobius strip is in two dimensions. At the same time infinite but closed and therefore knowable. Like an island it has one surface and one boundary. Set off in any direction, and you will eventually arrive back at your starting point. This is enough to drive many folk, (Jo included) to distraction and dementia. They call it rock fever here on Waiheke. This is how islanders are differentiated from mainlanders. The ability to construct a meaningful and fulfilling existence from limited resources – both geographical and spiritual.

To be an islander is to be something at least. An islander will tell you if he is honest that he feels special. Chosen. Privileged. Even a little superior. Geographical separation, even if only a few kilometres engenders a powerful sense of identity and belonging. They attract more than their fair share of shamans, sharks, sociopaths and shipwrecked souls it’s true, but that only adds to the appeal as far as I am concerned.

This elevated sense of worth and belonging is of course, like most aspects of our ‘reality’ largely an illusion. Just another label. A Granfalloon* as Vonnigut would say. After all a continent is just a big island, and from an astronomical perspective what is the earth, the pale-blue-dot if not an island in the void. Walk in any direction, and eventually you’ll find yourself back where you started. If you don’t get shot, raped, robbed or blown up along the way.

Somehow the notion “further you move away from the ocean, the more uncivilized it gets”, does not really apply to the above mentioned uncivilized activities. Whether you are close to the shore or are deep in the city, one always has to be careful and watch out for their own safety. But when you are on the coast, life gets more interesting and simple.

Stick to the coast that’s my advice.

* * *

*In 1963, Kurt Vonnigut wrote a novel set on an island. San Lorenzo is a tiny barren Caribbean atoll with no natural resources, and no industry. It’s inhabitants live merge lives in hunger, poverty and without hope. The self appointed ruler Bokonon, a British Episcopalian Negro from the island of Tobago whose real name was Lionel Boyd Johnson invents a religion, designed as all religions are, to salve the peoples suffering, and distract them from the grim and pointless awfulness of their existence.

Much of Bokonons scriptures are in the form of calypsos.

I wanted all things
To seem to make some sense,
So we could all be happy, yes,
Instead of tense.
And I made up lies
So that they all fit nice,
And I made this sad world
A par-a-dise.
Bokonon

Cat’s Cradle is a satire on the tension between science and religion, the rational and the irrational, and of course mankind’s breathtaking talent for fucking things up royally. It’s very funny.

And depressing.

According to Bokononism by the way, a Karass, is the group of people you will interact with knowingly or otherwise throughout your lifetime, as part of god’s greater plan – in as far as he has one. in the extracts from the books of Bokonon which Vonnigut chooses to share with us, you get the distinct impression that God has pretty much lost interest in humans and moved on to other projects.

If you find your life tangled up with somebody else’s life for no very logical reasons that person may be a member of your karass.

A granfalloon, is a false karass. That is an arbitrary collective formed by humans, but of no meaning or relevance to the way the universe operates or god gets things done. Examples of granfallons include race, nations, islands, political parties, families, quilting circles and pop-groups.

If I was going to subscribe to a religion. I think Bokononism would be near the top of my list.
Just above Jedi Knight. Here are the opening verses of the First Book of Bokonnon. And the whole of the Fourteenth Book.

The First Book of Bokonnon

Verse I: All of the true things that I am about to tell you are shameless lies.

Verse II-IV: In the beginning, God created the earth, and he looked upon it in His cosmic loneliness.

And God said, “Let Us make living creatures out of mud, so the mud can see what We have done.” And God created every living creature that now moveth, and one was man. Mud as man alone could speak. God leaned close as mud as man sat up, looked around, and spoke. Man blinked. “What is the purpose of all this?” he asked politely.

“Everything must have a purpose?” asked God.

“Certainly,” said man.

“Then I leave it to you to think of one for all this,” said God.

And He went away.

Verse V: Live by the lies that make you brave and kind and healthy and happy. [ frontispiece ]

 

The Fourteenth Book of Bokonon

[ A short book with a long title.]

Title: What Can a Thoughtful Man Hope for Mankind on Earth, Given the Experience of the Past Million Years?

Only verse: Nothing.

 

200px-CatsCradle(1963)