Saturday, 22 November 2014

Metaphor Green

Imagine that you have a small gardenits not big, in truth, you’re not much of a gardener.

Its driving force was the mother of your children, both she and they long gone.
One Saturday, having just moved into the house, you all went to a local garden centre where she bought some roses, probably discounted.

Getting home you were given specific instructions on where to plant themhow deep to make the holeshow much fertilizer to use.

And over the years since, in that simple complexity of nature, the rose bushes have, -if not exactly flourished-, at least managed to hold their own against your pottering skills.
You water them and feed them and prune them and cover them with hessian against the first frosts.

Your favourite rosebush is that one that has the yellow and pink roses…you don’t know the name, common or scientific…but the petals are crisp and deeply lemon with a candy-floss-pink just touching the tipsand as summer passes, the colours begin to merge.
Its perfume reminds you of a newly opened box of Turkish Delight on Christmas morning.

And now autumn is here and the few remaining roses look overblown and slightly wrought.
Its time for a final, inevitable and pre-destined prune before winter.

There are perhaps eight or nine small buds left on the bush, curled tightly like a toddler’s sticky fingers clutching his new favourite toysome faint scent remains, more woody now perhaps, more green but still faintly fecund.

Secateurs in hand you cut the first bud.and at that moment, as you diminish the rose bush, the bud is already dying, if not in fact already dead.
An errant thorn catches your thumb.

You take the buds up to your small flat, and place then in the water jug that serves as your vase...warm watersome plant foodand then you place the jug on the windowsill where it can catch the sun and becomes its own chiaroscuro work-in-progress.

Some of the buds fail to open.
Several flourish and even seem to turn towards the light.
Some last a few days, one or two last for a week; one in particular struggles on for two weeks.

Every night when you go to bed, as you switch out the light, you pause and remember all of those past summers, some with the children, some without, all still coloured by warm laughter and cool wine.

One morning, the rose is simply dead.
Black and withered, leaves and blossoms fallen to the ground.

Sans mercy
Sans purpose
Sans form
Sans function
Sans perfume
Sans joy
Sans hope
Sans redemption

Simply compost.
Simply dust.

You sigh slightly and throw the remnants away

That is what it feels like to be living during the four months you have been told you have left to live.

Monday, 6 October 2014

Mr Pushy to the rescue...

That's a good word to describe me.
Assertive....also good.
Aggressive...well, can't really argue with that either.
Rude....jah...that as well.

We all develop an array of  different styles and coping mechanisms to deal with the vicissitudes of daily life...Mr Grumpy....Mr Professional...Mr Sarcastic...sometimes even Mr Happy.

Sometimes though, despite the apparent success of our  coping mechanisms we can become welded to a specific style which may end up being dysfunctional...mine was Mr Sarcastic.

After my cornea transplant last year, I started a process to change some aspects of  my life and behaviour. I felt calmer and happier after the eye surgery and just decided to infuse my whole life with that calmness....and it was working...until the CUP diagnosis.
In fairness Mr Grumpy often made a guest appearance in my life when confronted by blithering idiots who are my colleagues but gradually Mr Calm would mediate.
When he failed then Mr Big-Bar-of-Chocolate...or in extreme cases, Mr Bacon-Sarnie would intervene.

Mr Pushy never really seemed to go away though
Its simple...I work very hard for my money and if I'm  paying for a service I expect that service to manifest fully and as described and promised.

I'm the person who complains in restaurants and gets a better table.
I'm the person you see getting an upgrade on the plane.
Or a discount in a shop.
Or assorted freebies.

I think generally that you have to 'take care of business'...the 'business' of your order to optimise all the facets and interactions of  your life...and that anything is acceptable provided you don't break any of the Ten Commandants.

About 15 years ago, when I was Nursing Manager at a private hospital in Johannesburg,  my car was stolen when I was at a dinner party.
In fact the Flying Squad had recovered it before I knew it had been stolen and had it taken to the Police Pound in Soweto, the 'black' city adjacent to Johannesburg.
I went to the pound the following day accompanied by the head-of-security of the hospital - Joe was Zulu, built like the proverbial brick outhouse and a trusted colleague.

We entered the reception area of the pound and saw about 12 police officers sitting at desks in various states of not-working.
They ignored us for a few minutes...Joe looked at me and shrugged.

I pulled a R50 note out of my wallet...a lot of money at the time...and said...
"Anyone here speak English"

Zoooooooooom...suddenly the Officer in Charge was at the desk, deftly shaking hands and folding the R50 into his pocket.
He was very helpful...he took me to my car and asked me to sign all the paperwork and assured me that I could pick it up the following day.
I apologised for ruining his lunch and donated another R50 to the tea fund.

During the transaction, an Indian couple were also trying to get the attention of the police and then trying to get their car released.
They sneered at me for my bribe.
I didn't really care.
The following day my car was ready and had even been washed.
The Indian couple found that their car had been broken into the police pound...and that the radio had been stolen;and that their car was standing on bricks since all the wheels had been stolen as well.
Jah....thats life.

So I am due to start my fourth cycle of chemo this week.Its on a 21-day cycle and I am  supposed to see my oncologist prior to each new cycle and  have a blood panel done.
I wasn't surprised or worried that I  left hospital after the third cycle without a followup appointment because the ability of two parts of the NHS,-even in the same building-, to talk to each other is just not going to happen.

I wasn't too worried initially when I didn't get a letter with an appointment in the past two weeks but became increasingly worried as the cycle-four date approached.
There's  some free-floating anxiety building to that fear that you've been forgotten.

Part of the problem with the NHS is that because its 'free' at point of service, the patient actually has little choice in accessing take what you're given.... the NHS will offer you all sorts of choice on their website and in their literature but its difficult to actually access any choices apart from that which is local to you.

I tried  to get seen at a different hospital after my second cycle of chemo  owing to the appalling care I experienced but in the end that just didn't happen.
Instead they switched my oncologist and apologised  for their errors.

So today I had to become pushy with the NHS.
Mr Polite-but-tenacious-Pushy.

I put on my plummy accent and phoned and asked to speak to the Professor.
I got his secretary - a pleasant woman who knew who I was....I'm guessing because of my complaint.

I explained the situation to her and could hear her tapping away on her keyboard.

I wasn't on the Inpatient chemo list for the next month.
I also wasn't on the Outpatient chemo list for the next month.
Or on the pharmacy chemo-preparation list.
Additionally, I wasn't on any list to see any doctor at any time.
At all.

Sometime ....for some reason...since my discharge two weeks ago, I appear to have vanished.

She promised to call me back...and did within 20 minutes, having spoken to my oncologist...who wondered why she hadn't seen me but who had just assumed that I was on her list somewhere.

And this is the Service who is pumping poison into my body.

Its time to unleash Mr Nasty.
Unless I can find someone to bribe.

Wednesday, 1 October 2014

Its the gravy , its the mashed potato...

I've never been drunk...
I've never had a hangover...
There is no great moral or ethical or philosophical or religious reason for this.

In the same way that I never got the point of Morris Dancing or badminton or self-harming, I never really *got* the point of alcohol.

I've certainly tried any number of drinks but never really found anything that I liked the taste of, or that slaked my thirst.
I used to go to the pub with my uncle and try all of his recommendations including a Christmas Pudding beer. Mostly I took a sip, felt like vomiting and stopped right there. He would naturally finish off the pint for me.
I did once enjoy a Peach Bellini in BA First Class but that was because it was ice cold and tasted of peaches.

I've also never done any non-prescription drugs, not least because I have problems dealing with prescription drugs.
I had surgery a few years ago to repair a nerve in my left ankle that I had injured running.The surgeon was both technically excellent and an old friend.
I remember going under the anaesthetic...
...I then remember being chased through a jungle for hours on end by teddy bears wearing rainbow striped waistcoats and carrying AK 47' matter how far or fast I ran they still pursued me.

So I awoke at about 3am, in pain and thirsty and scared...
...rang the bell for the nurse...
...and again...
...and yet again.
Finally I called the switchboard and a few minutes later three nurses carefully opened the door and eyed me warily.
Apparently I had reacted to the pethidine I had been given at some point and had tried to strangle my surgeon when he did his post op round.
He still doesn't talk to me.

So there I was last weekend, just finishing cycle three of my chemo, on the last bag of 5FU.
It hadn't been a bad admission overall although I really had difficulty eating anything.

At about 18h00 I saw something flapping outside the window...possibly  bat.
By 20h00 I was convinced that there were gargoyles at my window, leering at me and trying to get into my room.
Part of me knew that I was probably hallucinating...
...part of me was scared.

I started to pick at the skin on my abdomen to make myself bleed so that I could check that I wasn't hallucinating.
The gargoyles continued to batter the window.
And then I heard water running somewhere in the room.
I got up , wandered around and checked that all the taps were switched off, got back into bed and still heard the water.
I checked again...
...and again...
...and continued to pick at various lumps and bumps to check I was bleeding and thus still alive.

And then I was aware of someone standing in my room trying to sell me a toasted egg sandwich.

It felt like I was both the director of some low budget horror film and the actor but had no control over what was happening.

I found myself at some point standing in the corridor wearing only shorts with several wounds bleeding on my abdomen and trying to pull out my PICC line.
The nurses were less than helpful...
...around midnight they called the 'hospital-at-night' team who eventually sent an SHO down to see me.

He walked around the corner , looked at me and said, Aren't you Lucien from the Minor Injuries Unit?

I replied that I might be, my paranoia now fully florid.

I thought so, he said, I gave you the anaesthetic when you had your cornea transplant last year.

So they disconnected me from my chemo, - it only had about 15 ml left in the bag-, and he prescribed some Halopeirdol...which didn't work for about four hours...
...when I fell into a deep sleep and thought that I had driven home.
It was a real surprise to wake up still in hospital.

Throughout the whole hallucinatory experience I had a tune running through my head...'its not the gravy, it's the mashed potato'...
...who knows where it came from...
...but its still playing in my head as I sit and write this!!!

I think I need a drink.

Saturday, 30 August 2014

A life on the ocean wave....

I've been having a bit of a clean out...
...not really anything to do with the cancer...
...maybe about 5% to do with the cancer...
...and about 95% of thinking that the mother-of-my-children will roll her eyes and sigh  when she and the kids have to clean out the flat.

Actually my flat has just got too full of rubbish.

In 1965 my brother and I travelled with our parents from Southampton in England to Cape Town , on the Athlone Castle, a Union Castle mail boat, on a trip that took 2 weeks.

I remember being given a glass of warm orange juice just prior to boarding as there had been severe snow storms the day before.
I remember trying (i.e., my mother forcing it upon me) ( and not liking) , 'beef tea'.
I remember , after we had crossed the equator, that we were given endless tubs of ice cream, a rare and magnanimous luxury at the time.

I've found a few menus which today make interesting if bizarre reading and provide a snapshot of what was considered to be 'haute cuisine' , in particular the amount of offal on the menu ; and what parents thought  children should eat.

I cannot imagine ever giving my kids a cream-of-celery soup , even today; I do remember though that the children's evening meal was separate to that of the adults and that pretty much, they gave you what you wanted.

This was the menu for the fancy dress dinner, a highlight of the voyage for my parents.

I'm off to have a jam sandwich.

Friday, 15 August 2014

Is that a cancerous mass in your groin or are you just pleased to see me?

Dear Reader

So about eight weeks ago now, there I was, just woken up one saturday morning,- a day off-, and like every man everywhere, married or single, the first thing I did was check that my testicles were still attached to me...

They were...that was the good news.

The bad news was that overnight, I had developed a large swelling in my right groin...about the size of both of my fists.
I briefly wondered if it was a hernia but knew that it was a lymph node that was swollen, and  for no apparent good reason.

I saw the GP who thought that  it was a hernia and who referred me for an ultrasound...fortunately, the consultant who did the U/S immediately realised that it was a swollen lymph node and not a hernia and referred me very quickly for a CAT scan and then for a biopsy.

The biopsy was interesting...a (female) doctor exposed my groin and then stuck a huge freaking needle into it, several reminded me of my divorce negotiations.
It then took three weeks to get the result.

Which turned out to be something called "cancer of unknown primary".

This is a rare and vicious and extremely  rude form of cancer.
Rude, rude, rude.

And that was the good news.
There are five main subsets of CUP and they thought that mine was probably a squamous cell carcinoma, and so they decided to treat me for the worst type of that cancer.

Now this typically occurs in one of two places :-  the 'head-and-neck' area ....or the rectum.

"Rectum almost killed him'!

In the interim I saw a beautiful young oncologist who asked me to strip naked so that she could 
examine me as there was some concern that I had a malignant melanoma...I've previously had one, some 10 years ago which I beat.
This sort of naked experience usually costs  me £50.
She found a lump behind my right knee and sent me for an ultrasound of that.

That consultant wanted to know the story and then did the U/S.

Thats all good, she said, its something called a Bakers cyst 

"Thank goodness for that...its difficult enough trying to run from the Grim would have been freaking  impossible if I had to hop away on one leg!"

Oddly, she didn't laugh.
I've since discovered that none of the Oncology staff appear to share my sense of humour.

So then the oncologist sent me for  a PET scan.
That was the bad news.

So three weeks ago I was admitted to the local hospital,- St Vulvas-, for urgent chemotherapy.
The same beautiful oncologist came in to talk to me.

Good evening....Its very bad news I'm afraid...

"Uh huh...?"

The cancer has spread to your liver and right thigh and hip and left upper arm...

"Uh my long term survivability like..can you give me a number?"

About four months...

"Geez doc...don't be shy...don't sugarcoat the truth there..."

Well thats without treatment...

"Well....I assume that you are going to treat me though?"

She smiled 

They did.
So they started 100 hours of chemo.

It was very boring.
I had no side effects to speak off except extreme lethargy when I got home.

I saw the oncologist last week and the swelling in my groin has diminished by over 80%...
In her own words, she was "amazed".
Whilst they hope and expect the chemo to work, it typically only works after  two or three this is positive news.
It also means that their guess that I have a squamous cell primary is probably correct and that I am getting the correct treatment for it.

I'm due to have another one or two cycles and then a followup PET scan and then probably three more cycles every 21 days....I'm waiting for a call at the moment in fact.
There is a shortage of beds.

In the interim they will be looking for the primary.

Thats my story.

More later.

Wednesday, 16 April 2014

SAA 295 - The Helderberg

Oh! I have slipped the surly bonds of Earth
And danced the skies on laughter-silvered wings;
Sunward I’ve climbed, and joined the tumbling mirth
of sun-split clouds, — and done a hundred things
You have not dreamed of—wheeled and soared and swung
High in the sunlit silence. Hov’ring there,
I’ve chased the shouting wind along, and flung
My eager craft through footless halls of air....
Up, up the long, delirious, burning blue
I’ve topped the wind-swept heights with easy grace
Where never lark nor even eagle flew—
And, while with silent lifting mind I’ve trod
The high untrespassed sanctity of space,
Put out my hand, and touched the face of God.

The emotional fallout for an aeroplane crash is always  much more than simply the sum of lives lost and families devastated.

We  are reminded that we are after all, only insignificant and very mortal humans and not the Gods we believe ourselves to be....not the omnipotent beings that the digital age and its attendant consumerism would have us believe.

Every time I  am  at an airport and see a 747 trundle down the runway, I hear a  voice in my head saying , 'Lift off, we have a lift off'...every time.
Every time I see a plane.
Every time I am a passenger.

'V1' and the nose starts to rise.

'V2' and it heaves itself off of the ground, grasping its way into the air, the wheels leaving the safety and surety of the earth for the impossibility of intangible air.

We can understand intellectually the Bernoulli effect;'fluid dynamics';and Newtons Third Law.
But that's not what we see.
What we see is opportunity.
What we see is in fact evolution writ large - mankind crawling out of the mud, then reaching for the stars.

What we experience is the same sense of awe that man experienced when he first understood and utilised fire for his own benefit - a sense that we are in control of our physical environment and that a brave man can push back the darkness and fear

On that cold December morning some 110 years ago , Wilbur and Orville Wright didn't just make the first powered flight...they  proved that the collective reach of humanity  is beyond that of our simple  single caveman grasp and  they unlocked the door to an unimagined future.

For South Africans, the fire on board SAA 295 26 years ago and the subsequent loss of life remain a mystery.

Against the backdrop of Apartheid , and the iron grip of the securocrats , the loss of the Helderberg , and in particular the questions surrounding its cargo of alleged components of rocket fuel mean that the conspiracy theories are difficult to ignore.

And the  transcripts of the Margo Commission; the various archival footage available on YouTube ; and  the David Klatzow book do little to settle the mind against the charges that the State perpetrated a wilful cover up .