Sunday, March 25, 2007

Fall back! fall back! fall back!







I am so angry. Not only has the clock sprung forward and stolen an hour off me but everything I've tried to do today has ended in confusion. Carefully composed e-mails failing to deliver or disappearing into the ether, a food recycling bin that manages to project its slurry, in an inexplicable inversion of normal physics, in a miraculous spout up the sleeve of my shirt as I gingerly/ineffectually empty it into the cavernous spoor-green depths of the motherbin on the freezing Spring doorstep.

The state of the art vacuum cleaner that fiercely resists my attempts to open it then suddenly surrenders and dowses me in a weeks supply of cat fur, slutwool (I'm reliably informed that's the new socially acceptable term for the greyish brown fluff-like detritus that mysteriously accumulates under beds, on stairs and around skirting boards as soon as one's back is turned - so-called 'cause of its preference for dressing tables) and millstone grit from space.

All this underpinned by a constant headache from my last shot of interferon that is determined to wreak revenge for my escaping another 36 weeks in its company.

To anyone out there thinking of doing treatment for Hep C with conventional Standard of Care expectations, i.e. one year for genotype 1b, my advice would be ... Don't.
If your liver's OK wait and see what happens with the new drugs.

I've had a mere taste of interferon, 3 months of it. And the first month or so was fine, but latterly, honeymoon well and truly over, I've begun to understand why people loathe it.

Bleeding gums, earache, mouth ulcers, aching legs, rage, self-pity and hair-trigger intolerance for others, a seething and almost irresistible sense of injustice, blurred vision, and against the murmuring roar of the tube-train backdrop head-ache, a symphony of arthritic and muscular aches and pains that seem to conduct spontaneous tours around all known (and previously unknown) regions of the body.

"April is the cruellest month", I murmur resignedly as I laboriously negotiate the sprawl of the 23hr sleeping cat on the kitchen floor.
"Its March", says Sue.

Friday, March 23, 2007

The King in Yellow




And goodbye to all that. The title was a last bridge from hep C personified as an apocalyptic figure leading a tarantella across a medieval wasteland, accompanied by a jaundiced chorus in motley under a lowering sky - to the rediscovered pleasures of jazz.
The King in Yellow is a short story by Raymond Chandler about a hophead jazz musician ( shades of parker, beiderbeck et al) and sprung to mind 'cause it was all I could do today to watch robert mitchum in Farewell My Lovely on video (I was too tired to do anything else after my final injection yesterday - had plans, tried to go out but couldn't, didn't want to, and finally slumped and surrendered).
The therapeutic value of Mitchum as Marlowe/Mahler shot stark from below in a window frame, massive and prophetic, speaking of mortality in the clipped poetry of Chandler above the suffused visceral lit bloodflow auto-pulse of LA is surely without parallel. Perfect pitch.


I am heartily sick of Hep C and have grown weary of my own condition - will be vastly relieved when I officially finish treatment next Thursday. Only six more days to go.




Midway along the journey of my life


I woke to find myself in a dark wood,


for I had wandered off from the straight path.




How hard it is to tell what it was like,


this wood of wilderness, savage and stubborn


(the thought of it brings back all my own fears),




a bitter place! Death could scarce be bitterer.


But if I would show the good that came of it


I must talk about things other than the good.




How I entered there I cannot truly say,


I had become so sleepy at the moment


when I first strayed, leaving the path of truth;
(opening lines of Dante's Inferno)



Pray, let me not forget the value of industry when the medication ceases and I begin to recover my physical prowess (more so than before without the Promethean virus continually vexing my liver and sapping my strength).


Pray, let me not be forgetful, become sleepy and drift.


Dear God, let me value every moment of existence and rejoice in the wild abandon of being here, the sensual pleasure of the exploding spring and the accompanying riot of my own body.


'Produce, Produce for the night cometh when none might work!' - Carlyle


And while we're at it, waxing lyrical-like, lets pay homage to a true king in any colour - the late great genius of the tenor saxophone and true heir to the pure 110 proof spirit of Coltrane - Michael Brecker (pictured above).
Every time I pass the Union Chapel on Upper street, Islington, the memory of your solo performance there, most notably Naima and African Skies ( the whole place hushed spellbound holding its breathe in holy awe) comes flooding back, joy unbounded. Not to mention that first time at Ronnie Scots with joey calderozzo on the Hammond, and the Barbican with Herbie Hancock.
That last, I felt I was within the construction of a great cathedral that kept building and forming before my eyes. Backstage afterwards you said of Herbie hancock, "He's a genius, he has this capacity to hold all these parts simultaneously and grasp the whole and realise them not just through his own musicianship but through us" and I knew as you said it it was a mirror statement equally applicable to you. Its only now that you're gone I'm beginning to realise how good you were. Seen others since but the thrill is gone I fear. Thanks Michael.
Right, that said, I'm off to take my final dose of Vertex (and thereby replenish the metallic electrolyte coating of my entire mouth) and, appetite whetted, listen to some music.
Bill Evans I think, I'm still a little too fragile for the robust commitment of full-on saxophone possession. Its a serious business where the unwary can be swept away. Music hath alarums to wild the civil breast and all that. You don't believe me? then try listening to In the Wee Small Hours by Frank Sinatra all the way through at the painful end of a relationship - or Only the Lonely. Or, on second thoughts, don't. Like Jackson Pollock for the ears, or Ibsen's When We Dead Awaken .... to be treated with great respect. Goodnight.


Tuesday, March 20, 2007

Half a pound of VX-950, 2000 mikes Pegylated Interferon in 12 weeks

These last few days - I'm absolutely knackered. Dragged myself into work today then copped out about 10am and jumped the 19 bus home from Chelsea to Islington. The relief at escaping the atmosphere of treatment centre early recovery was overwhelming. Tannhauser Overture on the mp3, The Kings Road whizzing past from the upper front seat of the bus then a desultory root in the local charity shop (Christian Aid Blackstock Road) Pretty Flamingo - Manfred Man in original emi sleeve (with an advert for a Morphy Richards Spin drier on the back for 22 and a half guineas) 50pence plus Farewell My Lovely (robert mitchum and charlotte rampling) and The Deer Hunter £1 for both on video. Then blessed bed, shaking and shivering. Sanctuary. Home. And one injection and about 135 tablets to go ie another ounce of protease inhibitor VX and absolutely no sign of the dreaded rash reported by some trial participants. Like the title says I'll have taken 2160 millionths of a gram of interferon by subcutaneous injection and not quite half a pound of VX-950 by oral tablets in a period of 85 days or 12 weeks or 3 months or a season if you will. And thats it. Thats the treatment. Seems strange stripped like that. Massively out of kilter with the anxiety that preceded it. and just now the outcome seems irrelevant. I guess its starting to achieve its true proportions. And i'm starting to see it clear free of all the projections and expectations I've blurred it with. Whatever happens physically - its not going to save me. I'm still going to have to work like everyone else. Sombre thoughts from a flat place.

Saturday, March 17, 2007

VX950 Trial for Hep C Update - 'The Unblinding'




Last Thursday was Day 71 of of my 3 month trial of Interferon and Vertex VX950. I had my eleventh injection of pegylated Interferon so I've one more to go. 2 more weeks of oral VX 250mg lozenges x 3, 3 times a day.




We finish on the 29th March which will be Day 85 with a finale of hourly blood tests to monitor the pharmo-kinetics of the VX/Peg combo. On this day I'll be told whether I've cleared the virus which has vexed my liver for the last 30 years. Unlike Prometheus I'll be free. I don't know for definite whether I'm possessed of an uncanny percipience, steeped in denial or awash with residual hippiesque naivete but I'm convinced right down to the DNA that its worked and I'm free.




If thats the case I'm going to be one of a select group of people who've cleared genotype 1b in 12 weeks rather than a year, and without ribavarin to boot. The next test will be to see if I'm still clear in 4 weeks, then 8 weeks. Each one of these chronological milestones safely passed geometrically increases the percentage possibility of a permanent cure - and I can begin to breathe again.




Right now I'm just counting down the days and relishing the prospect of being free of the 8 hour tyranny of the medication - first thing when i get up, last thing at night - and a permanent metallic taste in my mouth, arms constantly buzzing like nettle rash, a constant headache that roller coasters up out of the subliminal to full volume then down again, a seething wounded mass of intolerance and hypersensitivity that causes me to jump as though struck at the slightest sound and flare into homicidal rage and self-pity at the most atomic of perceived affronts ( like someone not immediately getting out of my way on the bus or the street). Yeah never mind the cure, just for today stopping the meds will be reward enough. More later...


Interferon in Venice, Eclipse from Parliament Hill, and Swan unmuted on River Lea, Hackney





Thursday, March 15, 2007

Venice