On to the Marsden

Shortly after my transgression I’m transferred to The Royal Marsden Hospital’s rehabilitation ward for occupational therapy and physio. The staff are friendly, and the food is excellent. Its nice to have my own room, and I’m soon to form a lasting friendship with a chap called Colin, a patient in his twenties with a similar set of circumstances to my own, i.e. diagnosis of brain tumour, surgery, some initial mobility problems followed by radiotherapy and the onset of temozolomide oral chemotherapy, which I am still fighting for at the time. Initially, I am introduced to the delights of the wheelchair and commode, and after a number of weeks, I progress to crutches, and eventually a grandpa style walking stick. Physio sessions are laborious, and I push myself hard all the time with all manner of exercises, which eventually pay off dividends. Even Special Agent Jack Bauer helps me get feeling and movement in my left hand. Well not personally. More a case of I’m lying in bed watching episode after episode of 24 on my portable DVD player, manually exercising my fingers with my other hand, and monitoring and building upon minuscule levels of response in the tips of my fingers as I scrape the fresh cotton linen of the bed sheet under my arm for feedback. Support from my ‘big family’, read: THE MET. POLICE is strong. I have a constant stream of visitors with their own welcome brand of inimitable humour. They’re priceless, and more than a couple of nurses become besotted with my ‘rough diamond’ brothers.

Shower Room Shenanigans

A few days later my wicked sense of humour gets the better of me. The two nubile blonde twenty-something physiotherapists tasked with getting me mobile again decide to wheel me down to one of the ward’s shower rooms and introduce me to the delights of the ‘raspberry’ wash. Sorry, for all you non-Met types out there’ raspberry’ is shortened Cockney rhyme for raspberry ripple, which is cripple, which is basically moi! Anyway, I jump, not literally, at the chance of getting into a lather with these two babes, so it’s a huge beaming smile and a head full of 1970’s porn flick images, and off we trundle. Damn, I need a ‘tache! Upon entering the completely tiled room, one of the babes turns around and locks the door, the other starts to unfasten the knots at the rear of my hospital gown. Bonza! With a wily old sneer and a flick of what’s left of my fringe I pronounce, in the best Swiss Tony accent, ‘I’d pay a fortune for this in Thailand’. Oh is that a pin I hear dropping in reception? Okaay, they’re not amused. Never mind, in for a penny in for a pound. ‘Look ladies, its about to get very wet and warm, you might consider removing an item or two?!’ “ We’ll be outside if you need us, any problems just pull the orange cord”. I snigger quietly to myself; it’s the little things in life that help you get through the day. However, six weeks later, when a friendly doctor lets me look over my medical records, I see the two 'health professionals' have entered, “Made inappropriate comments”. Don’t you just love the politically correct culture we are forced to live in?!

What is a free gift? Aren't all gifts free? Sorry, thats been bothering me for a while!

Over the next few days my neurosurgeon, Mr Henry Marsh or one of his cohorts visits me frequently, and despite scoring very very low on the Glasgow coma scale, he assures me that my mobility will return in a few weeks. Apparently, this sort of hemi-paresis is common and transient. Yeah, who are you kiddin’?
But I got bigger worries at the moment, my bowels haven’t moved since the morning of my last surgery. I’m constantly urged to go by the nursing staff, but lying horizontal on a cardboard bedpan with nothing but a flimsy curtain between you and a ward full of mix sexed visitors kind of contracts one’s anal sphincter, if you know what I mean! Where’s the amyl nitrate when you need it? Being pumped with codeine and liquid morphine doesn’t help much either. The codeine is naturally constipation causing on its own, but the morphine is causing me to be extra lethargic and apathetic. Must say though, it is an interesting sensation being eaten alive by your mattress. Now I know what it feels like to be a ‘smack head’. If I ever get out of this shit in one piece I’ll certainly be able to relate with the prisoners I interrogate back at the ‘nick’. I momentarily contemplate asking one of my visiting colleague friends/family to bring a COZART Rapiscan test in for a laugh. Imagine, he’s a serving police officer, well half of him is, and he fails the opiate part of the standard drug test for prisoners. What a hoot that would be!
On the eighth day I put my foot down and demand the works, multiple hi-potency enemas, after all the visitors have gone home. I’ve been preparing for this for the last few days. I’ve been turning my nose up at the bowel impacting crap they call dinner and have been secretly gorging on fresh fruit, bran flakes and senokot. Yeah, I’m in pain, so much so in fact that I’m convinced the Devil himself must have conjured it up especially for me, Private Hell number 56,170866 I’m also pretty confident that the catheter isn’t helping my bowels much either. So much so in fact, that I actually tried to rip it out the previous day whilst squatting on the toilet. Despite repeated tugs it didn’t budge, lucky for me. According to the nurse, if I had been successful I would have ripped my prostrate gland and bladder out through my piss aperture. Mmm, nice! Probably would have looked a lot like a frog vomiting his own stomach up. Now there’s an image if you haven’t already eaten your dinner tonight.
Suffice to say the industrial strength enemas were successful, “CLEANER, CUBICLE THREE!”

As promised

And just as I promised yesterday, isn't that a nice long entry?

Stay tuned sports fans...

From this...

to this. Yes its possible, and I'm living proof. Anyway, apologies for the lack of update for a while. I've been a little distracted by other projects. However, I promise to make a nice long entry soon.

Moio sudno na vozdušnoy poduške polno ugrey

Sorry about that, I’m learning Russian at the moment.

Anyway, leading on from the last entry… the next few days are lifted straight out of a David Cronenberg film festival. Nightmares on a scale I could never have imagined.
As I’m being wheeled down from recovery I’m hallucinating like crazy. As I stare up at the passing ceiling tiles, I see their corners lift and swarms of crawling insects pour through the gaps. I close my eyes to escape the horror and vivid excerpts of the last few hours flash through my mind. I see everything compartmentalised, my personality, my memories, my thoughts and feelings, all neatly arranged in DFS like displays. It’s hard to explain, but I’m looking in on my mind and how it’s arranged from a third person perspective. Surreal yet terrifying!

I drift in and out of consciousness punctuated by fits of uncontrollable nausea. My wife holds my head while I vomit, tears of despair roll down her soft cheeks.

I wake to find myself sharing a room with another recent post-operative patient. I attempt the most basic of conversations in an effort to establish some form of normality. Big mistake. ‘Great, they’ve stuck me in with a lunatic from Tooting’, if this was on the ‘outside’ I’d be clamping his wrists in quick-cuffs and carting him off to the nearest psych-ward. Where’s my Asp when I need it? I drift off again.

My sleep is interspersed with visits from nurses taking temperatures, blood pressures and urging me to drink and pee. As one of them leaves at around 2am I strain my eyes in the semi-dark, and stare across the room to my manically depressed roommate. I’m startled by the presence of a small fiery demon hovering over his bed. I squint my eyes, still there. Well he is from Tooting after all. Am I seeing things, or have structural changes taken place within my brain that enables me to tune in on a different wavelength?

The medical staff are not happy with my recovery and decide to move me into the main ward for closer observation. It’s been at least 10 hours since I pissed last, and I’m constantly being coaxed to pass urine. However, I can’t pee into a paper bottle lying on my side, I need to be vertical. I attempt to raise myself, but the movement of the mattress and my left side paralysis make it impossible. By now the pain in my bladder is becoming unbearable, so grabbing my left leg with my right hand I pull my self over to the right hand side of the bed. With one deft movement I swing my legs over the side, touch the floor, heave my self-upright with the ‘good’ leg, and grab the paper bottle. Great plan, except I haven’t factored in the ineffectual left arm that won’t be able to hold me steady while the right hand is holding the piss bottle. I collapse in a heap, flailing in the dark in an impromptu bath of my own piss and shattered pride.
Before I know it I’m surrounded by scowling Philippino nurses. In about as much time as it takes to say, ‘are you taking the piss?’ I’ve got a catheter strapped to the side of my bed. I never thought I’d be so pleased as to have a pipe with a kink passed through my urethra. Wonders never cease.

So many cats, so few recipes.

Okay, the title's got your attention. First of all, sorry dear patient reader, I've been pretty remiss with my blog entries of late. I promise to put things right. So here goes...

Seven days pass quickly, and I’m soon being wheeled back down to the operating theatre. For some reason to do with expedience, I have been informed by the anaesthetist that I’ll be wide-awake for absolutely everything this time around. This includes the stitches from the last op being pried out and my scalp being ripped back. If I’m ‘lucky’ I’ll even hear the ‘schlock’ noise as my skull is popped back open. These people must think I’m some sort of unfeeling cyborg for me to take this much battering without batting an eyelid. Personally, I feel like a cross between Ray Liotta’s character in the closing scenes of Hannibal and a Terminator unit.

One of my surgeons prior to scrubbing up

I was beginning to think that I wished I never had found out about the bloody tumour in the first place. Ah well, If ignorance is bliss, why aren't more people happy?
Despite being in theatre for four or five hours, I remember very little of the procedure. It’s strange how the human psyche blocks out memories that are too distressing. Indeed, repressed memory is one of the most controversial subjects in the history of psychology and psychiatry. A repressed memory, according to some, is a memory (often traumatic) of an event, which is stored by the unconscious mind but outside the awareness of the conscious mind. Some theorize that these memories may be recovered (that is, integrated into consciousness) years or decades after the event, often via therapy or in dreams. I hope to God that this isn’t the case.
Another hypothesis is that cortisol, a chemical released during trauma, may induce forgetting. Cortisol appears to have the ability to erase details and possibly induce amnesia.
On the other hand, I may have experienced a form of organic amnesia, whereby damage to the medial or anterior temporal regions caused by either the surgery, or the incidental stroke I suffered, brought about a loss of cognitive processing while I was under the knife.
Alternatively, it could be the case that I was so dosed up on Rohypnol its surprising that I even remembered waking up that morning.
Whatever the case, one thing is for certain; you didn’t tune in for a clinicalneuropsychology lecture! Well you can take the boy out of academia, but you can’t take academia out of the boy!
What I do remember is lying on my left side, propped up at a 50 degree angle, the anaesthetist standing in front of me. Every couple of minutes she asks me to wiggle the fingers of my left hand as if I’m playing the piano. Happy with my performance, she asks me to do the same with the toes on my left foot. I see no one else, as they’re probably all behind me ‘scooping’ away. I feel no pain.
Next thing I know is I’m awake in the Recovery Unit again. I’m thirsty, I’m prodded, I’m poked, I’m used to it. After a while some doctors come to see me. They go through the Glasgow Coma Scale, and are sorely disappointed with the performance of my left hand side. Not as much as I am though.
“Hemiparesis”, they call it. ‘FUCKING PARALYSED DOWN ONE FUCKING SIDE’, I call it!
Yeah, The trouble with life is there's no background music. At that moment in time I could have really done with some!

As you can see, my hospital bed was rather hard. I didn't like pyjamas.

Well, ya gotta have a hobby!

IT'S ALIVE!

Mercifully, I’m unconscious for the sawing of the head. I’m only brought round when they’re digging about inside my temporal lobe. Again, when they start to put everything back together and insert the staples, I’m put back under.
I wake up vomiting as usual. There’s something about surgery and me that doesn’t agree gastrically. Once the nausea has passed I quickly conduct a self-assessment. Arms, legs, third leg, eyes, yes, everything seems to be working fine. A nurse points a very bright pencil torch into my eyes. “What date is it? Where are you? Who is the prime minister?” I reply, “2136, an orbiting medical facility 2500 miles above the Earth, not ‘who’ more ‘what’ is the prime minister.” The nurse is confused and turns to a colleague for advice. I smile, still got my sense of humour, self-assessment complete!
An hour later I’m on the Critical Care Unit (CCU) surrounded by friends and family. I’m starving and I’ve missed dinner. Not a bad thing considering what had been on the menu. TQ steps forward and suggests a Big Mac and fries. Not usually a 'Maca D' fan I amaze myself by accepting the offer. Thirty minutes later he returns with a Burger King instead. Result!
The nurse returns with the eye torch, "Where are you? Who are you? Who is the prime minister?" "Well, if this is CTU I must be Jack Bauer, as for the last question... dont remind me".

My neurosurgeon and his entourage visit me later in the evening. Mr Marsh is honest and straight to the point when he tells me that he estimates that he has only managed to remove 30% of the tumour. He adds that because of my good reaction to the surgery he is confident that he can go back in next week to remove the remainder. I agree immediately, in for a penny in for a pound, who dares wins, nothing ventured nothing gained, blah! Blah! Blah!

I'm not afraid to die. I just don't want to be there when it happens (Woody Allen).

All too soon we’re back to reality (is that a cue for a song?). My surgery date comes through for the 4th of February. The days pass quickly, and before I know it TQ is driving me down to the hospital. I’ve stocked up on Graphic novels, and my AV500 is full to bursting with my favourite movies. At least I’m going to be entertained during my stay.
The day of my surgery is surreal. I try my hand at some virtual temporal shifting. Its worked well for me in dentists’ surgeries before, it should work in an operating theatre. VTS is a phenomenon that I seem to have perfected. I first honed this skill in a sleepy Italian coastal village when I had to undergo excruciating root canal work. At this point, dear reader, you would be forgiven for thinking that all the treatment and surgery I’ve been through has left me quite ‘wibble’. Oh sorry, best explain what ‘wibble’ is. This is the word used by Rowan Atkinson in ‘blackadder goes forth’ to denote a state of insanity. Picture the scene, the hapless Blackadder, faced with certain death, inserts pencils up his nose and repeats, "wibble wibble", in order to get sent home from the trenches.
George: "What is your name?"
Blackadder: "Wibble."
George: "What is 2 plus 2?"
Blackadder: "Wibble, Wibble."
Moving swiftly on. VTS is a mind-set. Hey, come on I studied psychology for nine years (including two wasted on a doomed M.Phil./Ph.D., my career in the police was the ‘other woman’, so I tore up my thesis, deleted it from my hard drive, and never looked back). By focusing on a likely pain free future point you can say to yourself, ‘I might as well be there now, because this unpleasantness will soon be over and I’ll be looking back on it as just another memory’. Say this enough times and the unpleasant present swiftly passes and you’re in that pain free future. Wibble? Well it works for me!
I also like to become the stand-up comedian in the face of adversity. So when they wheeled me into the prep room I exclaimed to the waiting theatre staff that there’d been a terrible mistake as I thought I had booked myself into the Premier Travel Lodge on Kew Bridge Road last night, and not some scary hospital where they slice heads open. They start to panic, especially when they realise my D.O.B. is wrong on my hospital ID bracelet. It’s easy to get surgeons flustered. I shouldn’t be screwing with these guys, especially when they’re going to be ‘skull-fecking’ me in under an hour. A bloke with a beard steps forward and introduces himself as some prof. from some uni. somewhere. He tells me that with my permission he’d like to video the procedure so he could show his students. What did Andy Warhol say about being famous? Ah yes, “Everyone will be famous for 15 minutes”. Youtube here I come. I agree, and the cannula slips into my hand.
It was the establishment of Christianity as a major religious force, overwhelmingly supported by Plato’s philosophies that furthered the concept of the brain as the temporary residence of an immortal soul. This supposition was bolstered as many Western thinkers applied their own theories. For example, the physician Thomas Willis (1621-1675), founder of the term neorologie, believed that the human brain had a rational soul placed there by God. Whereas, the philosopher Rene Descartes (1596-1650) stated that the seat of the soul was in the brain’s pineal gland. Whilst, Albrecht Von Haller (1708-1777), the Swiss anatomist, physiologist and poet, believed the soul’s location was in the medulla oblongata.
I could go on, but the point I’m trying to make is that brain surgery, whilst awake, is probably the most intrusive thing you could possibly do to a human body. The surgeon is feeling around, cutting through the very fabric of our existence, our memories, our thoughts, our feelings, what makes us unique, what makes us ‘us’.
I don’t want to court controversy and draw similarities to rape, but if you subscribe to Willis’s, Descartes’s, Von Haller’s and others views, the surgeons tools are intruding, burning through the very core of your soul, and you’re lying there helpless for hours listening to the noises coming from your skull, sniffing the smells, sensing the vibrations through your body, watching them move about their work. Aware that you could die at any minute as the anaesthetist will ask you to wiggle your toes and fingers for the twentieth time.

The Big Day

Signing on the 'dotted'.

Wedding car and escort

The big day comes and goes far too quickly. Everyone has a great time, and the Thai Elephant is a big hit. So big in fact that my Borough's CID organise their next lunch there. The Richmond Hill Hotel wedding night treat from my extended Met family is amazing. An atmosphere that is conducive to ah, well... err, a wedding night?! The only hiccup occurs when my good friend Mike, an officer from Merseyside Police, takes a drunken wrong turn and ends up in a very predatory gay bar. Well, that’s his excuse!

Nonetheless, after a flurry of nervous texts to my hotel supper table, I organise a rescue party in the shape of my loyal fellow detective friend TQ, who helps peel the inebriated Mike from his new mustachioed chum.

Anyway, a final nod of appreciation to Superintendent Chalk, DCI De Meyer, DI Leonard, DS Windmill, DC Sheridan, the Commissioner, Sir Ian Blair, the traffic Sgt. who did the out riding, and everyone else that made this a very special day (sorry, I just don't have the space to fit you all in). To my very special family, thank you.

Men who have a pierced ear are better prepared for marriage. They've experienced pain and bought jewelry.

It had been a bit of a rush job, probably wouldn’t have been any faster if I’d ‘knocked-up’ a Sicilian Don’s daughter. Anyway, neither Francesca nor I had been big supporters of the institution of marriage. I had always subscribed to the idiom; if its not broken, don’t fix it! And Francesca had bore witness to her parents’ messy divorce when she was a child, and that would taint anyone. However, the circumstances that we were now caught up in made us see the sacrament from a completely different perspective. By getting married I was protecting Francesca and the childrens’ police pension rights, giving them extra security. And besides, it seemed like the right thing to do. The woman had borne me two lovely daughters, and had stuck with me through ‘thick and thin’.
The invites were easy, simply log on to a vacant terminal at the closest police station and send out a blanket invite to my Borough’s Crime Squad and their spouses. The rest of the places would go to officers in other Boroughs and departments that I had grown close to, blood relatives (err… that would just be my Auntie Ann then!) and friends that weren’t in the Met. I was going to fill that church. Best man would be my oldest and most steadfast friend, J.T.L. (What do the initials stand for? I’m sorry, you’ll have to ask him that yourself. It’s not for me to say!).
The church? None other than St. Elizabeth’s, the venue of my oldest daughter’s baptism, and mother’s funeral. Only seems fitting, as the expression goes, ‘births, deaths and marriages’.
The reception venue was found quite by accident. Walking home from the church after a meeting with our priest, Father Mathias, we stumbled across a familiar, but hitherto overlooked venue, the Thai Elephant, Richmond. Simultaneously we exclaimed, “Hey, that would be large enough!” It didn’t take long for us to give the restaurateur the number of guests and requirements, and in record time a deal was struck.
To give the whole proceedings a topical crime scene theme, I insisted that the wedding photographer be a Scenes of Crime Officer (CSI). Well, they are professional photographers, and it’ll raise a smile in years to come when the guests think back. An urban legend in the making perhaps?
Little did I know that my friends on Borough had arranged with the Commissioner to use his staff car, which he kindly donated, as the wedding car. I was also to discover on the day that the Superintendent of Operations, Mr Chalk, had offered his services as chauffer, and Detective Chief Inspector De Meyer would be usher come umbrella man. As the ‘icing on the cake’, traffic police would kindly supply a uniformed motorcycle outrider.

After shopping for clothes and accoutrements, such as an engagement ring, we were all set for the big day. Not bad considering the whole thing took less than three weeks to put together. That would be the Royal Logistical Corps background then!

A step closer

Two more Italian 'virtual' consultations follow in quick succession. One of the surgeons concurs with Spallone, whilst the other rejects the notion of further surgery as being 'too risky'.
Risk? I 'shit' it! If it wasn't for man taking risks we'd still be in the stone age! Can you imagine Christopher Columbus saying, "I'm not getting on that boat, its too risky". Or Winston Churchill commenting, "War with Germany? I don't think so, too risky mate".

We return to the UK to tell my oncologist that I'm going to 'bite the bullet', 'dig deep in my pockets', and have the surgery in Rome. He's not a happy chappy, and urges me to have a consultation with the UK's premier neuro-surgeon, Mr Henry Marsh. The same surgeon that operated on classical singer Russell Watson a few months earlier. An appointment is set up.
A couple of weeks later I'm sitting in Mr Marsh's office going over my latest MRI from Italy. Mr Marsh is an extremely interesting and charismatic man with the appearance and mannerisms of Dr Emmett Brown, the time travel pioneer from Back To The Future. Like Spallone, he is confident that he can remove all if not most of the tumour. He acknowledges that there will be some risks, such as hemiparesis and death, and is keen to point out a major blood vessel and bundle of nerve fibres on my MRI. Take a nick out of the former and there'll be ten pints of my blood on the ceiling in a blink of an eye. Slice the latter and my best friend becomes a wheelchair. Nonetheless, I accept the offer of surgery, and Mr Marsh is openly astonished at my enthusiasm that I'll be awake throughout the operation. I explain to him that I remember vividly the lecture in my Clinical Neuropsychology module back in 1995. The lecturer explaining that in some cases neurosurgery is best performed whilst under local anaesthetic. This minimises the possibility of paralysis, hemiparesis or loss of some other function such as speech or memory.
No date is set, but he tells me that he'll fit me in on the next available Monday (the day he operates) at St Georges, Tooting. In the meantime I've got a wedding date on the 6th January. My wedding.

Taking the fight to it.

So for all intents and purposes my treatment would consist of 30 x 60gy sessions of radical radiotherapy, and that’s all. My neurosurgeon didn’t want to take the risk of removing anymore tumour, and my PCT were too busy worshiping the dollar to give me my life-preserving drug. And that’s when Francesca and her mother had the great idea of getting a second opinion in Italy.
A few years prior, Francesca’s mother developed an excruciatingly painful but benign tumour on her spine. A radical neurosurgeon called Aldo Spallone safely removed said tumour, and a few weeks later she was walking again. Anyway, she suggested that I meet this Prof. Spallone to see if there was any alternative in Italy to the UK’s ‘suck-it-and-see’ fingers-crossed approach. This idea was met with some disconcertion by my consultant oncologist, who believed that Prof. Spallone was too radical a surgeon. He added that if I insisted on looking for second opinions abroad I should consider two surgeons that he was familiar with and confident in. I took his suggestion on board and accepted his offer.
A flurry of e-mails with copied MRI slides followed, and two weeks later (15/12/2006) I was sitting in Prof Spallone’s office in the Neurological Center of Latinum (NCL) in the outskirts of Rome.
Spallone was an impressive man, almost identical in appearance to the actor from Criminal Minds, Mandy Patinkin.
In conversation, I soon discovered that he had been a practicing neurosurgeon for a considerable number of years having completed his training in the now defunct Soviet Union. Indeed, he had travelled far and wide performing surgery, and had patients in Cuba to his credentials. His private clinic was impressive as well; an immaculate three-storey building in its own grounds, built in the 70’s, with nursing staff dressed in traditional white uniforms.
Part of the consultation fee included an MRI. This was a little too noisy, as they didn’t supply headphones or earplugs. Later, upon studying the images, the professor agreed on the tumour’s classification and stated that he could remove all if not most of it. However, he added that there was always going to be a risk of a complication. For example, he would be working around some major blood vessels, and nicking one of them would mean ‘goodnight Vienna’ for me. Nonetheless, he was confident that he could carry out the surgery, and emphasised that he had performed the procedure a number of times before. I now had another option. I was taking the fight to it!

The Devil is an NHS accountant

Once the shock had subsided we set about researching my options. According to the literature my prognosis would be better if I had as much of the tumour excised as possible. After consultation with my oncologist I contacted the neurosurgeon who initially conducted the biopsy. He insisted that the risks far outweighed any possible benefits. Risks being paralysis or death. He added that it would be highly unlikely that I would find a neurosurgeon in this country who would perform such an operation. He certainly wasn’t going to make any attempt to open my head again.
So what was in store for me? I was to have a course of thirty radiotherapy sessions and hopefully a programme of oral chemotherapy called temozolamide, the current ‘gold standard’ chemotherapy treatment for malignant brain tumours.
It was reasoned that this combination would reduce the tumour's size and inhibit further growth. However, I soon discovered that those not so nice people (I’m trying to watch my manners here, what I really want to call them is unprintable) at NICE (National Institute for Health and Clinical Excellence) had taken away the possibility of chemotherapy. This is the organisation responsible for providing national guidance on promoting good health and preventing and treating ill health. In addition, NICE helps health professionals implement THEIR guidance by providing tools such as cost templates, audit criteria and slide sets (I've said enough already, wink! wink!). NICE produces guidance in three areas of health:

1. Public health - guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector
2. Health technologies - guidance on the use of new and existing medicines, treatments and procedures within the NHS
3. Clinical practice - guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS.

Basically, ‘bean counters’. The ones that decide if drugs are released, and if so to who. For example, this is an extract from an official release on their website;

Where first-line chemotherapy with PCV has failed, temozolomide should be compared with the only alternative, which is best supportive care. However, the only data compares the benefits of temozolomide with those of procarbazine alone. Costs per cycle of temozolomide are estimated to be £1,488 including hospital costs and medications for side effects.’ Estimating cost per quality adjusted life year (QALY) is difficult because the extension of median survival time is not statistically significant, and the quality of life data are limited. The main benefit of temozolomide is that a proportion of patients benefit from a longer progression free survival time. Therefore the most useful measure of cost-effectiveness is cost per progression free week. Costs will continue to accrue if patients remain progression free, because further cycles of the drug will be given until progression occurs.

As you can see the heartless bastards are obsessed with money and statistics, and would prefer to leave a patient to ‘rot’ in a hospital bed rather than give him or her a shot at beating the disease, or in the very least holding it back awhile.
And in their infinite wisdom NICE decided that temozolomide, "…within its licensed indications, was recommended as an option for the treatment of newly diagnosed glioblastoma multiforme (GBM) in patients with a World Health Organization (WHO) performance status of 0 or 1."

To explain this WHO performance status thing;

0: able to carry out all normal activity without restriction
1: restricted in strenuous activity but ambulatory and able to carry out light work
2:ambulatory and capable of all self-care but unable to carry out any work activities; up and about more than 50% of waking hours
3:symptomatic and in a chair or in bed for greater than 50% of the day but not bedridden
4:completely disabled; cannot carry out any self-care; totally confined to bed or chair.

First part was fine as I had a ‘newly diagnosed’ GBM. Unfortunately, due to the epilepsy it caused, I was off work. As a result I was loosely classified as a ‘2’. So I got the ‘big middle finger’ from the rigid rule worshiping ‘demi-god accountants’ when it came to my PCT (Primary Care Trust) at Richmond and Twickenham authorizing the use of temozolomide in my case. It appeared to me, and those around me, that the Health Service had given up half way through. Bullshit considering that in my job I pay around £2568 in National Insurance contributions, and £5072 minimum in tax every year. When added up and multiplied over a working life that’s a lot of cash to the government and Health Service, and I’m not even going to start mentioning that every time I put my warrant card in my pocket and walk out the door I’m willing to put my life on the line for the people of London. For goodness sake I tackled and arrested a robber armed with a screwdriver a few years ago, whilst off duty, and on my birthday. I earned that bloody drug!

Interlude...

Yeah I know, I haven't updated my blog for some time. Its been difficult to find the time to sit down and think back to what happened after I got the crap news. Truth is everything was a blur of information and having to face up to the cold hard truth. The next five months would see me transformed from a happy-go-lucky individual with hair, and how I loved having hair (as the two pictures below demonstrate), to a freaky scarred patchy skinheaded Bond villain.

Bologna 1996, Radio Kappe Centrale. Spot the Richie Flanagan Show co-producer at the back, goatee beard and hair longer than a 'dolly bird'.

The cheeky chappy at the back barely in the photo. Hair tied back in a pony tail, well, I was going through my hairy leather clad biker phase. I had three that morning. "Ooh shut that door".


And the flop haired lothario in the impromptu Niagara cover shoot for that debut EP.

To this...

and even this. Oh well, at least I get to shag Sophie Marceau. Right, where's me fluffy white cat?

He who laughs last has not yet heard the bad news. Bertolt Brecht.

On the 13th November 2006 I attended my mother’s funeral service at my adopted parish church, St. Elizabeth’s of Portugal in Richmond. It was a fairly small turn out, my aunt, Francesca, her mother, my daughters, and some friends from work.
Afterwards, a hearse takes her remains up to the Wirral for burial. This will be in two days time. Unfortunately, I am not fit enough to travel. However, as expected, friends and relatives from the Wirral attend the burial to pay their last respects.

A full two weeks after the operation I go to the out patients clinic at the Royal Marsden for the result of the biopsy. Sadly, the results haven’t come back from
Pathology. They give me another appointment for two weeks.

The days drag by until the appointment. I’m keeping my fingers crossed that the tumour is not as serious as it looks in the MRI. Again, I go to the clinic with Francesca. This time the head of the dept. comes into the consultation room. He has the results. He is ‘backed up’ by two other clinicians. The rest is a blur. I pick out the words, ‘not good news I’m afraid’, and ‘malignant’. A seizure that is a size 9 on the Richter scale envelops me. I struggle to stay seated on my chair.
There are no treatment options, its radiotherapy from here on in. Another appointment is made.

Ricardo, Sonny, I missed you guys!

Trapped in the apartment until I recover from the surgery, I immediately invest in a digital set top freeview receiver, which allows me access to about seventeen more channels (puny by American standards I know). This allows me to reacquaint myself with a lot of re-runs from the 80’s and beyond, and one of my all time favourite shows is being aired after sixteen years in some dark cupboard. Miami Vice brings back fond memories of another life I lived so many years ago, so far away. A life of condos, Corvettes, ties as thin as the moustaches, and Maserati driving Columbians with permed hair and chests and fingers dripping in too much ill-gotten gold (another scary story). I lap it up and am lost in the nostalgia.

Ten days after being discharged I’m having my twenty staples being removed by a nurse in my doctor’s surgery. This is nasty, and is very similar to removing normal staples from cardboard except the nurse has to break through scab and overlapping skin to get under them and a grip. Not pleasant, and I excuse myself from time to time to squeal like a pig. Cue Deliverance reference.

A couple of days later Francesca’s mum flies back to Rome. Despite the usual anti-mother-in-law jokes this is not ideal. Francesca needs as much help as possible, and Ann is a bit like a ‘fish out of water’ with the kids.

A few days later I attend St. Georges hospital again. This time it’s for an electroencephalogram. TQ, my friend from work is happy to take me there, and cheerfully sits through my ordeal of having my scalp glued to a net of tiny electrode like objects. After bombarding me with ‘up close and personal’ strobe lighting for what seems like an eternity, and being subjected to the usual rave music and Star Trek Borg references the technician ‘unhooks’ me from the machine and TQ and I leave via our waiting squad cube.

Things you don't want to hear in surgery number 38 - Better save that. We'll need it for the autopsy.

Early November 2006. Less than a week after my mum's death I’m being admitted into St. George’s Hospital, Tooting, for my biopsy. Avtar, one of the cops in my squad, takes Francesca, my auntie Ann and me there. The kids stay at home with Francesca’s mum, who is over from Rome for about two weeks.
Upon arrival I'm booked into a two-bed side room. The patient lying opposite me, I soon discover, was a roofer that had fallen some distance onto a concrete floor compressing part of his skull a few weeks prior. He was cheerful, and introduced me to the delights of the patient TV at the side of my bed.
After about two hours I told Francesca and Ann to go home, it was getting late and I didn’t want Francesca to go home to find her mother dangling from the rafters. The kids had a tendency to ‘run rings’ around her.
Shortly after, the nurse came around and took a blood sample from me. This would be the first of many. One of the surgeons called in next to explain the procedure to me. He told me that in addition to a biopsy they would be removing a portion of the tumour through ‘debulking’. It was anticipated that this would alleviate any pressure build-up within the cranium. He’s a young man, in his early thirties, and judging by his name and accent I would say he was from Central America. Not a good time to mention the Alamo then?!

The next morning a nurse wakes me at 7am. She orders me to wear a ridiculous operating gown. After ablutions I don it the logical way, the only way the one hundred tiny tassels can be tied. Unfortunately, this leaves me with a slight problem, my ‘wang’ is hanging out. Hmm… air-conditioning, I think. Just then a nurse walks in. Time for a ‘bom chicka wah wah’ moment. Yeah, not the way my lucks been lately! She’s someone’s granny, about 300lb, and not putting up with any shit at the start of her shift. “Son”, she announces in a thick Jamaican accent, “you got that on the wrong way”.
Shortly after a porter arrives with a gurney. Carefully, covering my ass and ‘bits’ I gingerly hoist myself up and sit on the side. With one deft movement I bring my legs up horizontal whilst maintaining my dignity.
Quick intros. In the theatre, seem like a nice bunch of people. I remind them that I’m not a traffic cop, and that I only usually deal with robberies and burglaries. A small prick in my hand, doctor, there’s a time and a place [sorry, couldn’t resist that], an icy stream up my arm. I try to say the caution, I get to, ‘…court…’, and I’m out.

Operations are strange things. I always fancied time travel would be the same. I mean the needle goes in and the next thing is you wake up three or more hours later in another part of the hospital with no sense of elapsed time. Sure enough, true to point, that’s what happens.

The recovery in hospital is swift. Ten staples in the side of my head, and a big patch of hair missing. The wife fondly refers to me as Frankenstivan. Truly, the root canal work two years before was worse. But then again, that was in a tiny Italian village with little or no anaesthetic. Just call me Indiana Ivan. Well my life is made up of challenges. ‘Snakes, why did it have to be snakes?’ Nah! Brain tumours, why did it have to be brain tumours?

Four days later I’m on my way home to the temple of doom. Well the mother-in-law is staying! Help!

Piove sempre sul bagnato

That evening a few of my workmates kindly drive my aunt and I down to Kingston Hospital to visit my mum. I find her giving the nurses a hard time, telling them what treatment she’ll have and what treatment she won’t. She does have a point though as she has probably spent more time on a ward than most of them put together, and that’s only when she was a child.
The following day, another visit thanks again to a lift from my workmates. I’m starting to feel that I’m imposing on them, and I stress my concerns. They assure me that its no big deal, and they’re more than happy to help out. As the weeks progressed their generosity and compassion never failed to amaze me, nor would I ever take them for granted. At the hospital, my mother and I attempt to chat a while, but she had a difficult night and her health has not improved.
The following morning my aunt receives a phone call. It’s a doctor asking us to attend the hospital in the first instance. Francesca urges me to go with my aunt but I have an appointment with a member of the Strategic Management Team, and a representative from the Police Federation immediately after that. I had planned to visit the hospital straight after the meetings, the 65 bus to Kingston passing the police station where I would be.
The reception in the office is uplifting. Most of my workmates are present, and we chat and eat the cakes I brought for about half an hour before the first meeting. Just as I’m about to sit down with Chief Inspector Morgan for the first appointment I receive a phone call on my cell. It’s my aunt, she’s crying. Slowly she tells me that my mum has just died, that her heart had given out. I collapse into my chair with my head in my hands. I cannot hold the tears back. I sob into my phone that I’ll come down right away, and then end the call. An overwhelming feeling of betrayal and loss surges up from my stomach. I should have been there with her, to hold her hand and to comfort her in the last moments. Instead I had put the police first. Then I tried to rationalise, I had believed that my mother was indestructible, she had to be. How could someone who had been ill so many times before in their life die now, at this moment in time, when I needed them the most? I turn to the Chief Inspector, compose myself, and tell him the news. He puts his arm on my shoulder and offers words of comfort and condolence. He then goes to find my Detective Inspector. The Chief Inspector returns a couple of minutes later with a shocked DI Leonard and DS Robinson (Robbo). They offer their condolences and then go to find a driver to take me down to the hospital.
The trip to the hospital is surreal. As the scenery races by I find myself questioning what has happened in these two short months. I’m in denial, this shit can’t be happening! I call Francesca, and she starts to cry. She tells me that she’ll leave the girls with a friend and make her way down as soon as possible. I tell her that DI Leonard and Robbo have arranged for a couple of officers to collect her shortly.

I meet my aunt at my mother’s bedside. As we stand by the bed, she tells me her last words and that she went peacefully. I sit down and cry as I gently take her lifeless hand. Francesca arrives moments later. She breaks down upon entering the ward. We hold each other a while and sit next to the bed. Francesca tells me that two of my workmates had volunteered to baby-sit until we got back. The kids are in very safe hands. After some time Francesca and my aunt leave me with my mother so I can pay my last respects. I sit for a long time holding her already cold hand whilst reflecting upon the good times we spent together, the occasions I had held that hand before, when it was warm and full of life. I kiss her forehead softly, apologise, tell her I love her, and leave…

Happier days; from left to right, my aunt Ann, Francesca, and my Mum.