Tuesday, 3 February 2015

Glad tidings of comfort and joy....

I met with my Oncologist last week to get the result of my post-chemo PET scan.

I was stunned by the result....as was she.

There are two main items in the report: -
Firstly, the cancer in the liver and in the lymph nodes surrounding the blood supply to the liver has completely resolved. This is an unexpected but positive and crucial result.
Everything else in my abdomen and chest is clear.

Secondly, there are some bizarre isolated lymph nodes in my retroperitoneal space, which are showing signs of ‘abnormal metabolism’ whatever that may mean - I've come to understand that it does not necessarily mean cancer. Indeed, the reporting radiologist and my oncologists and the DXT consultant are not sure what is causing the lymph nodes to show up.

I was referred to the radiotherapy team for treatment of these isolated nodes and met with them today. After some preliminary planning and CAT scans I will be undergoing five weeks of radiotherapy probably starting towards the end of February.

I will be given some tattoos on my abdomen as markers for the radiotherapy - my first tattoo!!

I am meeting with Occupational Health on Monday 9th February with the expectation that I am will return to work on Monday 16th February on a graduated ‘return-to-work’ plan which will hopefully coincide with the DXT.


Monday, 15 December 2014

"The Golden Hour"

In 1989 my then brother-in-law popped over one evening and asked us if we had any ideas for TV programs.
He used to work as a sound engineer for a small TV production house.
At the time, the concept of 'The Golden Hour' was still relatively new in trauma medicine particularly in South Africa;and so we suggested this concept as a possible idea.
We wrote a one-page treatment and I  discussed the potential program with Dr Ken Boffard, the then consultant in charge of the Trauma Unit ( Area 163) at the Johannesburg Hospital.

I didn't get an on-screen credit although I recall we were paid a lot of money for the idea.

This program is as more a slice of  medical history and South African social history than anything else...and I was  a little surprised to see how many of the nurses  I later dated!

The concept is still generally valid although the newer 'Platinum 20 Minutes' is a more up-to-date protocol.
Copyright is apparently held by the SABC and the program was made by Penguin Films;but since it doesn't appear to be available anywhere to rent or buy or even illegally download.....as if I would....never I tell you, never....I thought I would put it up.


Gosh....weren't we all so young!!

BTW...'hotdogtimmy' was my call sign...from the verb, 'to hotdog'....to grandstand...but I looked really cool.

Tuesday, 9 December 2014

...in which I discover I am apparently a cat and am owned by a certain Mr Schrödinger...

In a hypothetical experiment, (that)  Schrödinger, a physicist devised in 1935, a cat is placed in a sealed box along with a radioactive sample, a Geiger counter and a bottle of poison. If the Geiger counter detects that the radioactive material has decayed, it will trigger the smashing of the bottle of poison and the cat will be killed. 
The experiment was designed to illustrate the flaws of the ‘Copenhagen interpretation’ of quantum mechanics, which states that a particle exists in all states at once until observed. If the Copenhagen interpretation suggests the radioactive material can have simultaneously decayed and not decayed in the sealed environment, then it follows the cat too is both alive and dead until the box is opened.
Common sense tells us this is not the case, and Schrödinger used this to highlight the limits of the Copenhagen interpretation when applied to practical situations. The cat is actually either dead or alive, whether or not it has been observed. 
“[It] prevents us from so naively accepting as valid a "blurred model" for representing reality,” Schrödinger wrote. “In itself, this would not embody anything unclear or contradictory.” Schrödinger’s Cat has been used to illustrate the differences between emerging theories in quantum mechanics, by testing how they would approach the experiment. 

So I finished the sixth and final cycle of chemotherapy last Tuesday;and subsequently had the PICC line removed from my left bicep that same afternoon at St Vulvas Oncology Day Unit...which has been a real pleasure to use rather than being admitted to the wards as I was for the initial treatment.

( In fact I had to request to change oncologists as I lost faith in my initial doctor, not least because the locum I had seen at clinic told me about the possibility of having the treatment as an out-patient, which the  initial oncologist just could-not or would-not , facilitate.)
( There aren't that many advantages to being South African in the diaspora  except the willingness to be rude and demand better  / adequate treatment when you feel disadvantaged.)

Aluta continua Comrades! )

I have never really understood why anyone would seek admission to hospital when they could and should be treated at home...apart from the insane and homeless...but must admit to seeing at least one patient a day since I have been working in  the NHS who has requested admission to hospital for what is frequently a trivial complaint.
And who then gets offended when I laugh in their face...as I am prone to do.

Not that it was a picnic but that was mainly due to the profound tiredness and nausea and then abdominal pain and cramps...indeed in the five days of active chemo, - ( the pump was strapped to my forearm), -  I only ate a small bowl of Fruit Loops and three bananas...
...I live alone, with my lovely son living and working some 70 miles away and so ,pragmatically,  on a daily basis  I have relied principally on my landlady and my char-lady  to look after me and provide me with my daily provisions although I have had some good local friends who have also been invaluable.

I basically just stayed in bed and looked at the wall, lacking the will to read a book or even watch TV...and the five days post-chemo were exactly the same.

( Note to self : paint the walls...and exactly when were the curtains last changed?)

But gradually I got better and was surprised when I went shopping today to see that it's apparently Christmas.

The plan now is to have a PET scan on 5th January and to see my oncologist on the 22nd January.

Basically its a 1/0 result - either the chemo will have shrunk the mets and lymph nodes and put me in a limited “remission” ; or it won’t  have worked and/or the cancer will have “bounced back” after the chemo has finished.

I am repairing/decaying.
I have a future/I do not have a future.
The heartache and nausea of the past five months has been worthwhile/a waste of time.

I am in a state of limbo, a state which has terrified me and mystified me in equal parts, since it was presented to me , aged four, in Catholic school.

But lets be positive !

BTW...has anyone reported this Schrödinger chap to the SPCA?

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 life...in 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 overnight....in 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 services...you 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's...no 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.