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.