Edition 4.1 October 08
[Pages 1 – 38] Copyright © RFI
[First Published June 2006]
So there you are, not so much riding the rollercoaster of life, more driving down its motorway on cruise control, when:
1. You are made redundant without any warning after 10 years with your current employer.
2. During a routine shopping trip, you wake up in the local A&E ward without any knowledge of how you actually got there - I know what you’re thinking but please don’t judge us all by your own standards.
The staff – who bore very little resemblance to those dedicated ones working in shiny hospitals on BBC1 - give you the news; they have “found something in the scan” and you are to be referred. In this case, referral meant an immediate ambulance ride in the depths of night to another hospital.
To reduce the dramatic tension somewhat, have you ever been lost in an ambulance on a hospital approach road network? “It must be straight on here, no… erm…didn’t we take that turn the last time? Ask that chap over there…”
Referral is, as we will later see, a very significant word defined in the dictionary as “... to have recourse to some authority; send on or direct...” The recipient hospital – particularly charmless and built as a form of concrete shrine to the 1960’s – conducts some further tests.
The Consultant and Oncology Nurse now invite you into whatever spare room [or broom cupboard] they can find to pronounce the verdict - you have a Brain Tumour that, due to its location, is very likely to be terminal.
Immediate surgery is recommended and the risks of various options are mentioned. This process is called “Informed Choice” and, like referral, it will be a theme that we will return to later. At what point do I actually wake up and find that this rollercoaster ride is a dream? Actually, a rollercoaster ride has an up and a down – I was only receiving “no news or bad news” at this time.
By coincidence, a BBC1 programme Life on Mars about a policeman who, after a car accident, awoke back in 1973 provided an eerie backdrop to the unreality of the events unfolding before me. You should note however that my Consultant did not wear flares and instead [rather worryingly] resembled Uncle Albert from Only Fools and Horses.
The required procedure – a Craniotomy - will also include the taking of a sample for biopsy to confirm the classification of the tumour. What is a Craniotomy? Try thinking of how you eat a boiled egg if it helps. Apparently, there is an official scale used in these matters running from “Fluffy Rabbit” to “Furious Rottweiler”. Actually, this is not true, the use of adjectives was recently banned in the NHS following new government guidelines – they are now considered as being too discriminatory. In their place, a rather more prosaic Grade I – IV scale exists.
Erin Dawes [pictured middle] discusses the impending operation with the Consultant and Hospital Registrar HEROISM IN THE FACE OF BOREDOM
For somebody who had rarely had cause to even consult a G.P, an extended stay in hospital was a new experience. Not having any obvious symptoms meant day after day of waiting with nothing to do – especially as the NHS patient day is very long with routine tests performed at 0700 and 2230 and the time in between being punctuated only by noise. Whilst waiting, I could not actually leave the hospital as I would then lose my place and the operation would not be performed as planned.
A patient in the next bed had obviously suffered a head injury and was not yet “compos mentis”. The meals were delivered to him and then collected some time later – “Not hungry today then?” Many – but not all nurses – were clearly graduates of the Rosa Kleb School of Nursing. I can only imagine that this was how it felt to be a prisoner of war – I of course had the stoic Alec Guinness type role. “…despite this overbearingly intense heat, we must stand together against the enemy chaps…” [Steady on now, don’t overdo the metaphor.]
Eventually, after the operation and nearly a week of post operative monitoring, I was released back into society and there followed an anxious wait for the definitive biopsy result. This was eventually communicated to me at home [by telephone] as being; “No trace of tumour found.”
This mantra was then repeated endlessly in the face of my obvious questions. The result had of course identified the need for another broom cupboard liaison. What does it all mean – am I now OK?
Which of the following do you believe to have applied?A. A bearded, very irritating man came out from behind the curtain and revealed that it was all a jolly TV prank.
B. I was advised that “it is illegal to discriminate against tumours and therefore the matter was being taken very seriously [Sir]”
C. It was later revealed as a gross act of negligence on behalf of the hospital and I appeared on GMTV [being interviewed by the “twittering” one] as well as receiving handsome compensation.
D. It was simply a fact that the bits they originally took out could not be identified in the Haynes Manual for Brain Surgery and further samples would be required to classify it. A Stereo-tactic biopsy will now beckon; what is this? Have you ever seen an Eskimo fish? If you would like to take part in this competition, please send your answer [with money of course] to:
THE ANSWER IS “D"
ANOTHER PHONEY MONEY RAISING NON-COMPETITION CAROL VORDERMAN’S TV WORLD
GMTV
P.O BOX 1234
Why not text your answer? Send any long word to 12345. Standard rates of £1 / entry plus £1 per letter will apply. Don’t forget to get the approval of an adult – anyone will suffice [even that strange one at the bus stop.] Winners will be announced – honestly!
THE WORLD IS YOUR LOBSTER [courtesy of Arthur Daley]So, there you are, this chain of events explains how I became the proud owner of a Rottweiler [sorry Grade IV tumour]. Actually, I would hate you to assume that I have been using alternative therapies such as Visualisation. The Rottweiler – without any name – didn’t actually exist in case you are still confused. The tumour called Glioblastoma Multiforme unfortunately did.
The final broom cupboard meeting waves you off with the standard prognosis - one year or maybe two years life expectancy. As a private patient, I also received an additional [but chargeable?] pearl of wisdom; “You will never be better than you are now, so get out there and enjoy the time you have left!” This is somewhat akin to being driven to a cliff edge and then being asked politely “What would you like to do next Sir?”
Unfortunately, there also remain a couple of academic points to mention:1. You will find obtaining suitable travel insurance at an affordable price [if at all] extremely difficult.
2. Ah yes, and there is also the little matter of further treatment.
Before my recent experiences, I would have assumed that this very significant medical phrase meant that everything would revert to normal after some brief medical intervention or crisis.
I now realise that it only relates to the conclusion of an individual procedure. It is therefore perfectly possible to have a “full recovery” from an operation without actually curing your particular ailment. I cannot understand why this ambiguous phrase is used - unless to deliberately avoid revealing the more complex reality of the situation to a patient. Sadly, I can report meeting at least one that could not appreciate the subtle difference based on what they had been told.
Whilst I have the dictionary out, it is also worth mentioning “ Remission; [noun] diminution [reduction] of force”. There is a public misconception when headlines claim that somebody is “in remission” that the turning point has been made and the path to a complete recovery inevitably beckons.
Sometimes, but not always, the situation may indeed allow for such a favourable interpretation of these phrases.RAIN IN THE MORNING, RAIN IN THE EVENING
Success in the handling of terminal Brain Tumours is always going to be relative and therefore very hard to define. The resolutely gloomy prognosis offered to me so far led to my undertaking further independent research – something that I recommend anybody in a similar situation doing.
A few immediate conclusions I drew were:1. Early diagnosis [and therefore commencement of treatment] is critical to success. I was fortunate enough to present symptoms that required an immediate scan. Incidentally, I love that medical phrase “the patient presented symptoms”; would Sir like them gift wrapped for that special touch? Others might have months of tests [and even misdiagnosis] before reaching the same point – possibly too late.
2. Your age and general health are predetermining factors. I was “lucky enough” to be diagnosed in my early forties – a double edged sword if ever I saw one though!
3. Successful cases often involve patients who concurrently adopt a vitamin and herbal supplement regime - thus forming a more integrated approach to treatment. This is of course a subject in itself and, as this book is not intended to be a reference guide, I do not propose to take the matter any further. Incidentally, finding anybody to give a balanced view – or even to consider it a serious option – from within the NHS is nearly impossible.
4. Be wary of US web-sites where the claims of success in attempting various alternative therapies are the more fantastic with supporting evidence such as “she was given a month to live three years ago so imagine my surprise when she p