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.