Saturday, April 28, 2007

Prove 2 VX-950 Vertex Trial Results Update



I finally got my result for Day 85, 29th March (see previous entries),the last day of the 12 week arm of the Vertex VX-950 PROVE 2 trial.

29th March Day 85 HCV RNA PCR TAQMAN 1220 IU/ml

And 2 weeks later (the so-called 'safety check' visit) -

11th April <30 IU/ml no HCV RNA detect

So, what does it mean?

Well, I was clear of the virus from the 29th day then, bafflingly, unexpectedly, produced this faint positive on the 85th day, 5 minutes before my final dose of VX-950. I'd had my last shot of interferon a week before.

Professor Dusheiko was "absolutely happy" with this reading, I'm reliably told by Dr Fleur.

"He believes its simply the expulsion of dead viral material and has seen this phenomenon before".

Now, in all honesty I'd normally be struggling with that... except for the fact of this negative result(no virus detected) 2 weeks later, (11th April).That lends credence to the professor's theory. From all the research I've done, I've never seen a case where its slipped back like that during the medication, only to disappear 2 weeks later when the medications ceased and all the defences are dismantled. It doesn't make sense. Unless he's right... and its gone for good - and its taking its dead with it. Lets hope so.

The only other factor which may have a bearing. Once the medication ceased and I was no longer prevented by the protocols of the trial I re-commenced my TCM (traditional chinese medicine) the following Monday with a herbal rescue package from the legendary John Renshaw at the Blenheim Project.

Now, I've no way of knowing exactly (or even approximately) whats been happening in the cellular labyrinth of my own body - however, I felt from the moment I started the trial that it had worked, and, equally curiously, when I ended it I was beset with viral dreams and plagued by anxieties that it was back. I experienced the old symptoms once more - sweaty, feverish, cold and aching, angry and obsessed. And none of that makes sense in frontal cortex daylight, even if it was back.

And now? Nothing. I feel great. Better than I ever have, more energy - physical and mental, more hope. Awash with ideas, unafraid. In short, its gone. Whatever malign hydra held me has been sloughed off. Time to trust my intuition again .... And the first thing my intuition tells me is to get down the Blenheim on Monday and get fully armed with herbs and acupuncture ... and a couple of months supply of John's own liver-friendly vitamin capsules.

Monday, April 23, 2007

Epping Forest, an antidote to Work


It may look like a convoluted form of narcissicism (the photos)but it helps to balance and exorcise the more pathologised aspects of my life ie the addiction treatment work (which I'm heartily sick of) and the ghosts of Hep C which I am equally heartily sick of. Courage - of the heart.

I walked out of work today in the middle of the morning meeting, over a "clinical" decision I didn't agree with. Got out onto the Kings Road and in the mixture of illicit 'delicious 'cause unexpected' freedom and survivor guilt at leaving my colleagues behind, there was also the sobering realisation that I'm done with this fucking work - at least in this front-line primary treatment incarnation. Our old clinical supervisor, Andrew Akers, once told me burn-out was a necessary part of the job. "Its like Masai 'slash and burn'," he said, "it encourages new growth and prompts change". Well, yeah, I hear that; its not like I haven't been here before,7 years working in prisons for RAPt, the last 3 of which spent taking a 12 step Programme to young offenders - a thankless task eventually (and probably pointless - the jury's still out for me on that one).

Before that Lorne House, Turning Point, a residential drug project for young people in Hackney, no discernable ideology other than whatever confused superstitions and prejudices the benighted crew of well-meaning inadequates (for the most part) who manned the place brought with them. And before that the 493 Project (Addaction needle exchange living off the fat of the HIV money - for a time; gone now). People coming in on crutches and Zimmer frames brought low by the new-found ability of Temazepam to shape-change once safely ensconsed in the femoral vein and metamorphose into a half-brick. I've clearly reached my shelf life.

And all the time this forest, 20 minutes from my house, continues, as its always done. These from yesterday -




Sunday, April 22, 2007

Total Abstinence Conference Liverpool 16th April 2007




I set off on Monday morning satisfied I was totally prepared for this conference – my workshop researched and my main hall talk reflected on. I’d prayed, taken inventory, examined the purity of my motives (mixed as always, but bordering on the ok) and bought a new leather jacket (TJ Hughes, incredible bargain and karmic resolution – I’d wanted one since I was 16). I set off with confidence and purpose – and arrived at the wrong venue. I’d checked the agenda, knew when I spoke and what I spoke on – but where, I had no idea. So much for 18 years of recovery – the cunning and baffling spectre of unmanageability still very much alive.

A client from Sharp called Ruth (where I went by mistake like a homing pigeon) became my saviour, my benefactress. She (when I was inwardly panicking) kept a cool logical head and guided me to the Gateway and from there to the Maryland centre. At both places workers bent over backwards to help me. The Maryland got the key info from Parkview and suddenly everything was ok. Ruth saw me into a taxi by the Phil and 10 minutes later I was in the main hall at LACE surveying the rapidly filling hall.

To my consternation I noticed the first 3 rows (the best seats) had RESERVED on them. My immediate assumption –“probably for NTA dignitaries, politicians et al, the usual mob of freeloaders on the make”.
“They’re for graduates of Sharp and Park View – that’s what this conference is about” said Jac calmly, in response to my belligerent approach.

I took my seat on the main table. A silence – then the haunting sound of bagpipes playing Amazing Grace. The tall dignified figure of the piper, fully accoutred in kilt and all, led a line of equally dignified men and women who walked proudly, solemnly, up the aisle and silently took their seats – at the front, where they should be.

These were the people we were here to celebrate – the impossible people, the so-called hopeless cases become full of hope. Each one a miracle. Difficult not to speculate how many more potential miracles never made it ‘cause no-one told ‘em it was possible, no-one was prepared to offer them the information that total abstinence works and 12 step treatment was available at Sharp Liverpool and Park View.

As I listen to the presentations from the various luminaries from the National Treatment Agency (the scaffolding that came after the building was built then told us how to do it) and others - among all the admittedly if belatedly encouraging words the phrase that triggers me, twice used from the platform then reiterated later in my workshop, and each time accompanied by sage noddings of approval from a constellation of dullards, is “forcing people too quickly into total abstinence”.

It’s such transparent bollocks. Whether people are ready or not is none of our business. We have no right to deny them the information, or the space, to find that out for themselves. As usual I’m outwardly polite and accommodating, then and later in the melee of questions, but part of me burns with the implied arrogance of denying the client total abstinence “because he may think he’s ready but we as professionals can see he’s maybe not”.

This from people working in the field is stupid and unforgiveable. So why do they do it, how do they justify withholding information because the possibility of recovery exceeds their understanding? All under the guise of helping the service user make “informed” (by them) choices. I smell spin. I smell fear. I smell oppression by stealth. My negative assumptions aside there’s clearly a case to answer.

Anyway, I force myself to come back to a loving place and acknowledge that adversarial tactics simply isolate and alienate further – then I catch myself and think this is how we work with vulnerable clients. But these are workers. They are supposed to be more robust than the clients they work with. How come their egos are so fragile? How come we have to be diplomatic and walk on eggshells around drug organisations, local politicians and the like? Why is robust discussion or debate so threatening? I actually don’t walk on eggshells round clients because it would be disrespectful, would deny the greatness in them, so why do I do it round these? Has it ever worked? No!

So, here’s what the day brought me, the realization that it doesn’t matter what your ideology is - total abstinence, minimum harm, or maximum harm, less harm, no harm or recovery - you’ve got to honestly allow the client choice by providing the information without prejudice or spin, and if you haven’t got the information then go out and fucking well find it. Do your research, do your job with integrity. Anything else is dereliction of duty. Any worker in the caring profession who condemns an established successful route to freedom like 12 step treatment on hearsay is denying clients the chance of life. It amounts to criminal neglect. In short we cannot project our prejudices onto clients. They deserve better. And we need to be prepared to look at ourselves. What are we afraid of? What’s our investment in keeping people sick? There’s a school of thought that would view this as a covert form of oppression, a denial of voice and power to those at the suffering edge of the economy … and I’d be hard-pressed not to agree.

There is Hope

In my workshop a man who had been instrumental in the methadone response of the ‘80’s and before ("The Diconal Years" he accurately called it) responsible for Peanut Pete and all those excellent Lifelines Mancunian comics (harm minimisation at its best – saved lives) - this man said a profound thing.

“Maybe my resistance to total abstinence was related to my own undiagnosed depression – and maybe I’m not the only one. Maybe others let their own lack of hope get in the way of offering hope to others. Maybe hope is anathema to the sick; and maybe we are the sick, hiding behind our clients”.

There was an uneasy silence in the room, some open faces, some tightly folded arms, a mixture of resistance and excitement. The old adage is as true now as it ever was -“Physician, heal thyself”.

If we are not prepared to look at ourselves, be accountable for our actions, soberly examine our motives, then we are in danger of doing harm and in turning the helping profession into the hiding profession.

Acknowledgements

Delight for me in hearing former clients Mary and Georgina speak; radiant, powerful women with a voice, pioneers of Sharp and Parkview. Delight seeing other familiar faces – Nicky for one - still clean and sober. And of course Carl Edwards, as usual a powerful understated manner that radiates authority and compassion. Jacquie (Sharp Lpool manager) - human, fiercely passionate and professionally - peerlessly formidable. As Carl rightly said, the conference was a tribute to her formidable organisational and motivational skills.

And of course, good to see Tristan Millington-Drake the man who single-handedly made residential secondary treatment available for men and women in London (18 years ago) – and started the first community-based day treatment programme (Sharp 15 years ago). He was accompanied by Nick Barton CEO of Clouds House and now joint CEO of Action on Addiction, treatment head Kirby Gregory and Brian Wells, consultant Psychiatrist. Passionate, informed and uncompromising, all have been instrumental in making 12 step treatment a reality in this country and accessible to anyone. Their involvement bodes well for the future of the new organisation Action on Addiction. And, of course, Team Sharp Liverpool – June, Maria, Joe and Ross (Fernando was holding the fort back at Rodney Street).

The candle-lit vigil at the end of the conference(when the names of those who’d died of this terrible disease were recalled) brought a well of memories flooding up, all the names I could add to those spoken, so I’m putting them here ‘cause they too deserve to be heard. Oh, and a special mention for both the guys from the NTA – Paul Hayes, who spoke clearly, knowledgeably and honestly about addiction without bullshit or sentiment and Mark Gilman who disarmed me with his willingness to speak courageously and honestly about himself and his work in my workshop. Thanks Mark, as you’ve already realised – this is an inside job. If we aren’t willing to be curious about ourselves (and also be accepting of our own actions) we’ll simply project our own fears into the people we’re trying to help. Open-mindedness, willingness and honesty.

I survived. These guys didn’t -

Robert ‘Chas’ chandler
Geoff ‘rollo’rawlinson
Robert ‘Mecky’ Metcalfe
Peter ‘Kav’ Kavanagh
Kevin O’ Donovan
Chrissie Booth
Bobby Nyo
Rest in Peace

There are many more
Simply
"Missing"

Monday, April 09, 2007

Ithaka



As you set out for Ithaka
hope your road is a long one,
full of adventure, full of discovery.
Laistrygonians, Cyclops,
angry Poseidon-don't be afraid of them:
you'll never find things like that on your way
as long as you keep your thoughts raised high,
as long as a rare excitement
stirs your spirit and your body.
Laistrygonians, Cyclops,
wild Poseidon-you won't encounter them
unless you bring them along inside your soul,
unless your soul sets them up in front of you.


Hope your road is a long one.
May there be many summer mornings when,
with what pleasure, what joy,
you enter harbors you're seeing for the first time;
may you stop at Phoenician trading stations
to buy fine things,
mother of pearl and coral, amber and ebony,
sensual perfume of every kind-
as many sensual perfumes as you can;
and may you visit many Egyptian cities
to learn and go on learning from their scholars.


Keep Ithaka always in your mind.
Arriving there is what you're destined for.
But don't hurry the journey at all.
Better if it lasts for years,
so you're old by the time you reach the island,
wealthy with all you've gained on the way,
not expecting Ithaka to make you rich.
Ithaka gave you the marvelous journey.
Without her you wouldn't have set out.
She has nothing left to give you now.


And if you find her poor, Ithaka won't have fooled you.
Wise as you will have become, so full of experience,
you'll have understood by then what these Ithakas mean.

Sunday, April 08, 2007

Time to wake up - and smell the lavender


Today I am somehow compelled to recount my life through the medium of cats.

And immediately
Rather than words comes the thought of high windows:
The sun-comprehending glass,
And beyond it, the deep blue air, that shows
Nothing, and is nowhere, and is endless.

Philip Larkin

The Trees - Philip Larkin


The trees are coming into leaf
Like something almost being said;
The recent buds relax and spread,
Their greenness is a kind of grief.

Is it that they are born again
And we grow old? No, they die too,
Their yearly trick of looking new
Is written down in rings of grain.

Yet still the unresting castles thresh
In fullgrown thickness every May.
Last year is dead, they seem to say,
Begin afresh, afresh, afresh.

Gather ye rosebuds while ye may


Arsenal beaten by West Ham, Manchester United beaten by Portsmouth and Liverpool facing PSV at Anfield on Tuesday with 3 away goals in the bag. One would have to have a heart of stone not to laugh out loud. At this moment I feel more alive than I've felt for years. I sing the body electric and all that. Meanwhile the user-hostile Dyson reproaches me from the living room floor. Time to move on.

Resurrection Day


Outside, a blaze of colour. Hard to write this as I'm being intermittently savaged by Rupert our new kitten, driven to fury by the movement of my hands over the keyboard. As I stood on the step this morning with my two cats breathing in the novelty of a silent street - normally a constant ebb and flow roar of traffic and discordant voices and drillings and hammerings, anger and strife - a new world appeared.

First, the resident grey squirrel fossicking about under my car, then the pair of jays on the opposite roof rooting through the guy's flowerpots punctuating their cheerful vandalism with raucous barks and sawings and a disturbingly human heightened sigh. Suddenly, the instantly recognisable creaking of big birds in flight. I looked up expecting to see canada geese and was rewarded with a line of four mute swans, necks stretched, diagonalling over the street towards the Stoke Newington reservoirs.

Meanwhile a dunnock flits out of the yellow blaze of forsythia in the front garden and a flock of blue tits and great tits (sometimes in an extended alliance with long-tailed tits and goldcrests - depending on the political clime, i guess; but not today) swarm cheeping noisily round the offerings of seeds and nuts hanging from the windowbox (courtesy of the pound shop). They disappear as mysteriously as they appear and the street becomes authentically empty once more - except for the light. Nature abhors a vacuum.

Saturday, April 07, 2007

Christ Erect - Before and After




I took the bottom photo with my mobile a few hours after that awful biopsy in December up on the 12th floor of the Royal Free Hospital. Physically, it was about all I could do at that point. I thought I may need it as evidence of my near-death experience or a memento mori for my loved ones! What family wouldn't jump at a horrible grainy image like that to cherish and iconise?. Post-bio, post-Finchley tornado, post-panic, post-tramadol.

The top photo is, hopefully, the last ghostly appearance of the interferon grey relic I became over the last 3 months.

Anyway,the holding pattern's over. I'm feeling great; headaches and fatigue gone, physical strength returning,libido rising (the modern version of "Then longen folke to go onne pilgrimauges") brain-fog receding, Happy Easter indeed.

I've already done a week of chinese herbs, courtesy of the excellent John Renshaw at the Blenheim Project, as part of my recovery from the treatment drugs, and started doing weights again. Running next, then sunlight - and a sober look at my position with SHARP. Time to stretch out a bit.

I have my 2 week 'safety' appointment next Thursday in order to check I've suffered no adverse effects from the Vertex VX-950. I haven't.

More importantly, I'll get my first post-treatment result which, hopefully, (definitely) will confirm sustained viral clearance (SVR) without the support of the interferon and vertex. Whatever the future, this drug is clearly in another league to its predecessors. My viral load dropped from 23 million to under 6000 almost immediately. this is almost a total clearance in less than 4 days. The residual 6000 a mere homeopathic shadow of the vast horde that preceded it. Firepower - comparing an anti-viral like ribavarin to an anti-viral like VX-950 is like comparing a flintlock to an AK47; both guns but there the similiarity ends.

FIRST MURDERER "Are we not Men, my liege?"

MACBETH "Aye, in the catalogue ye go for men, as hounds and greyhounds, mongrels, spaniels, curs, shoughs, water-rugs and demi-wolves are clept all by the name of dogs!"

Let it come down.

Vertex VX-950 Phase 2 Trial - My Results

Apologies for my tardiness in posting these results. I got them on 29th March and have sat since then in a kind of euphoric daze as the implications have slowly percolated through my consciousness. Fear of the gods, who sport with us as boys with flies - or straw dogs or some such, has finally given way to a shuddering wave of relief, joy and gratitude. In short, just for today I no longer have Hepatitis C. Here are my results.




6th Dec '06 Screening visit 1 8670000 IU/mL

13th Dec '06 Screening visit 2 14900000

4th Jan '07 Day 1 pre-dose 23400000

8th Jan Day 4 5950

11th Jan Day 8 1510

18th Jan Day 15 267

25th Jan Day 22 36

1st Feb Day 29 <30 HCV RNA detected

15th Feb Day 43 <30 HCV RNA detected

1st March Day 57 <30 no HCV RNA detect

15th March Day 71 <30 no HCV RNA detect

29th March Day 85 not yet received

12th April Post-treatment safety check to come (will also be crucial 1st test of status without treatment drugs(Pegasys and VX-950)

Liver function tests 'normal'