The Hep C Letters - or "Into the Vertex"

My life feels like its approaching a financial crisis point. I finished my last contract 2 months ago. I've refused 2 others. this in the light of a large tax payment due in January and only a rapidly increasing overdraft with which to meet it. Yet, however irresponsible it may sound ... I feel a strange sense of freedom and excitement. The reason? I'm about to take part in the trial of a new drug (infinitely preferable to being on trial for drugs) that may finally free me of chronic Hepatitis C after ...who knows, 20 years, 30 years?

The new drug is called Vertex and I have a 75% chance of getting it. Good odds. Take them or, alternatively, wait an uncertain 3 to 5 years till (or if) its licensed and then bank on the less certain possibility it will be available on the NHS. I've decided to go for it. The worst outcome is I receive conventional combination treatment, which has an approximately 40 to 50% chance of clearing the virus (genotype 1b) - good odds by anyone's accounting.

The Vertex? 100% success in some trials in the states - clears the virus in 4 weeks. And if none of this works? my viral load (ie the amount of virus in the body) will be reduced, my immune system will have been given a boost - and I'll have had a go. its niggled for years knowing my liver's constantly under siege,inflamed, not knowing how much I'm affected by that - but knowing I am. Other benefits? well, though I've enjoyed my work - these last few years especially - I've been accompanied constantly by an increasing sense of frustration and dissatisfaction with my seeming inability to go further and realise my own ideas about therapy, particularly for groups , but also for individuals. I feel i've shoehorned myself into delivering somebody else's theories for the last time. So this may be a godgiven opportunity to take stock and step up.

My intention is to publish my journey over the next few months unedited - as it comes. The dream is that as the virus burns so do the prison walls of my own making, the 'mind-forged manacles' and a greater freedom of movement is discovered in the world. Tomorrow I'm back at the Royal Free at 9am for a liver biopsy, my third though frequency doesn't make them any less daunting. More of this later -

E-mail to Charles Gore at the Hep C Trust

Hi charles and catharine
first screening day today - chaotic confused day of delayed appointments and the usual depressing and initially unsuccessful search for blood. everything was running late and coupled with an air of urgency. apparently the other sites of the trial in Europe have started and a delay with the ethics commitee has compressed everything so ...unrealistic appointment times. rushed explanations - no thats not strictly true - more like confusing explanations. Still, understandable in the circs and eventually all came good and all was clear. Prof dusheiko dr anthony gilbert research fellow martha and nurse amelia all excellent. they eventually sent me off to the bloodroom where a phlebotomist named rene emilio waved away my fears looked disdainfully at the 1/2 dozen bandages left by the above and immediately and effortlessly filled the 10 containers with the minimum of fuss and nil discomfort. I've recorded his name for the rest of the trial ' cause it makes a massive difference in anxiety levels for me if i know the person can do it. its like dowsing or mediumship - some people have got it and some people haven't (the skill to locate veins that is). its no respecter of qualifications.
Anyway, its a four armed trial so i have a 75% chance of getting vertex. worst case scenario is pegasys and copegys and i'm resigned to that possibility,which indeed may work. I presume we'll start beginning of january. I'm taking a 3 month contract at SHARP as a primary therapist so no management worries - was hoping to go to Barbados for Clouds in jan but i've let go of that. It might be good to be forced into a period of reflection for a time and just concentrate on building a modest private practice and presenting my workshops. biopsy tomorrow will be 3rd one but unavoidable as last over 2 years ago - trial consistency. not relishing it but hopefully it'll be the worst single event - the next adventure will be the effect of the medication. If my medication stops at 12 weeks i'll know i've had the vertex. I'll keep you posted if thats ok it will help me having informed empathic others to bounce this stuff off. thanks charles for giving me a sober balanced info i could trust on the couple of crucial times we've spoken and thanks katharine for getting me off my arse to the shaking chi gong - only once so far (and it nearly killed me) but i left feeling cleansed energised alive and inspired - the journey continues
love and fellowship
nick m

Tomorrow the biopsy. Wish me luck