Day 257 October 23 2013
I went to clinic today to do my 12 week blood tests which will determine if I’m cured. I was so nervous I wanted to puke. Kings College Hospital has been the scene of a lot bad news for me and Louie.
Day 229 September 26 2013
I received exciting news in clinic today. If I’m still clear next month it means I am cured. Apparently guidelines have changed; 12 weeks post treatment is when you get the all-clear now. This may only apply to treatment with the protease inhibitors.
Day 207 September 03 2013
I got my 4 week blood test results back yesterday and I’m still clear. According to Charles Gore (this is not science) if you are still clear at 4 weeks post the new treatments you should carry on being clear. Once you are off the protease inhibitors if the virus is going to come back it should start replicating immediately. As I said this is Charles’ theory and not official. Officially I’m signed off in July 2014.
Day 189 August 16 2013
I'm sticking to the number of days for this blog as officially the trial finishes in July 2014.
Day 166 July 24 2013
I was in my office at 8am this morning. I haven’t done that in 7 years of working at The Trust. I was the 1st person in and I told every single person as they arrived. Someone told me to be quiet because I was scaring them
Day 162 July 20 2013
I’ve had a great week. I only had one day when I felt dreadful. The rest of the week I motored about (as much as you can in this heat) until around between 5-6 when I crash most days. And crash is the right word. I can be normal one minute and then literally slumped in exhaustion the next.
Day 157 July 15 2013
I’ve just come from my week 10 visit clinic. All my bloods are still looking good. On the whole I’m feeling better and better but I still have days when I crash. Yesterday was one of them. I got up in the morning with the intention of going into the office but didn’t make it passed the front door. I asked about that in clinic today. Ivana said that I could expect to have off days for a few months as my immune system will still be fighting to keep the virus at bay for a while yet. These off days are only two or three times a week now instead of everyday.
Day 152 July 11 2013
Oh my God I’m so fat. I think I’m fatter now than I was at full term pregnancy with Louie. I’ve been watching back footage that was shot a week ago of me with disbelief. Even my face is fat! In the big scheme of things I know it will come off once I can exercise again. In the small scheme of things I feel like a big fat balloon with a loaf of white bread for a face.
Day 143 July 3 2013
I’m starting to feel excited now about the changes going on in my body. I’ve been so much better and more active. Lots of things have happened since my last blog. I will précis some of them.
Day 137 June 27 2013
I’m back in the office this week. I’ve been feeling better physically and happier too. I made a couple of decisions after I got back from my parents. One of them was to put off a big piece of work I was about to embark on this month. Postponing it lifted my mood instantly.
Day 133 June 23 2013
Everybody says I look really well. It’s the first thing they say when they see me. Even I can tell I look better, although I’ve put all the weight back on that I lost in Ibiza. When I tell people how much weight I’ve put on, they nod silently. I should stop fishing for someone to say I haven’t.
Day 128 June 18 2013
Today was a clinic day. I was in such a bad mood I couldn’t even smile when I arrived. Nothing to do with the staff at Kings. I’m in a bad mood most of the time at the moment. I can hear myself complaining and self-piteous and I make myself sick. Also I’d had to rush home to get my drugs after a 9.30am meeting because I’d forgotten them again.
Day 123 June 13 2013
This is the boost I needed to get me through the next few weeks. I went from 17 million copies of the virus to none in 4 weeks. The next few weeks are all about making sure it never returns
Day 122 June 12 2013
Turbulent is the best way to describe the last few days. I think it’s a combination of Ribavirin messing with my head and the last month or so catching up with me. Either way I don’t feel myself.
Day 116 June 6 2013
Yesterday marked one month on the proper treatment. I continued to feel better up until yesterday when I got over-tired again. I remember when Louie was doing treatment he was so excited by the changes in his body and his diminishing viral load that he’d continually over-do things and then crash for a couple of days.
Day 113 June 03 2013
Normally when I come back from Ibiza I have to rest for a week before I go back into the office. I rested all day Saturday but on Sunday I felt OK. I picked up my niece from her grandmother’s and we went to a toy shop to buy a medium size toy. We got a Playmobile princess with a unicorn, a peacock and swan. My niece told me the swan was called Swan Lake, because she likes lakes.
Day 111 June 1 2013
I’m back in London. I came home a day early because I’d finished all my work by Thursday and I missed my son (sofa). The second week wasn’t as full on as the first. I got to see some friends and rest a bit. I’m amazed I got through the first week in tact. On the Thursday after the auction I was more tired than I knew it was possible to be and still be standing.
Day 106 May 27 2013
The news about my plummeting viral load has sunk in now and I’m very happy about it.17 million to 76 in one week is unbelievable.
Day 103 May 24 2013
I spent a couple of days in a hotel near the venue to recover from the initial wave the exhaustion of the first two days. I still didn’t have a phone so I went to Ibiza town to sort it out couldn’t. I tried to buy a Spanish sim but I didn’t have my passport with me. I've to been too tired to go back there again.
Day 100 May 21 2013
Here’s a run-down of the last 36 hours or so. I went to the hospital for 9.45 a.m. I was depleted after my mega work catch-up . Louie came to the hospital with me. He said you can have a nice relax on the plane. I wanted to relax on the sofa.
Day 99 May 20 2013
I’ve been on the proper drugs for 12 days now and the only side effect I’ve felt was a headache that lasted all day yesterday. I got headaches on the placebo so it might have nothing to do the drugs. It’s strange that I felt dreadful during the placebo and better on the real drugs. I feel happy and positive. I’ve been industrious and productive. People who have been on interferon will think it’s a miracle that I’m off on a work trip tomorrow, on treatment and looking forward to it.
Day 96 May 19 2013
What a difference a week makes. Because I slept most of last week I got very behind on work. This week I’ve worked pretty much night and day getting up to speed. I’ve enjoyed it. I started to feel better half way through the week so it felt good to be productive. I feel prepared for Ibiza now. I’ve had so much help from the people at the International Music Summit. Instead of worrying about how I’m going to cope I’m looking forward to it.
Day 93 May 14 2013
Back to clinic again today; I think I might have been a bit petulant. Louie and I have a holiday booked in Italy at the beginning of August with our family. Our flight out there was booked for the day before my treatment finishes. It’s bad luck that I was on the placebo so that the treatment and the holiday clash. I asked for permission to come to clinic a day earlier which would mean flying a day later. At clinic I was told that the people in charge of the trial had said no to this.
Day 89 May 10 2013
After 2 days of nearly solid sleep, I’m in a much better head space. When something hits me hard I generally respond by becoming comatose. I think I work things out in my sleep. I get moments of clarity in between being asleep and awake while I’m still in dream-state. On the Monday before I got my results I had one. I realised just how much this whole thing has taken it out of me.
Day 86 May 7 2013
This morning I went into clinic extremely excited. Louie was so nervous he thought he’d throw up. Ivana congratulated me on how well I’d done and then told me that I’ve have to be good for another 3 months as I’ve been on a placebo.
Day 83 May 4 2013
This week has been great. I’ve had much longer windows of energy. Twice I’ve walked to and from London Bridge from Waterloo after practically a normal working day at the office. There was a while when I’d be so tired by the time I reached Clapham Junction that I needed Louie to come and walk me home.
Day 79 April 30 2013
I’ve got just one week left of treatment as from today. It’s coinciding with a stressful week of meeting and missing deadlines.I feel ready to pop but I haven’t lost it with anyone. People who have been on interferon treatment will marvel at this. Ribavirin (one of the drugs used to treat hep C) combined with the interferon means that you find yourself in white hot rages without any notice. On the last treatment I abused policemen, had breakdowns over socks going in the wrong drawer and tried crashing my car on the passenger side to shut my passenger up ( it wasn’t Louie). One of my work colleagues got banned from Asda and another, normally very mild, friend found himself kicking the side of a bus ferociously because someone pushed in-front of an old lady.
Day 74 April 25 2013
Well I’m pleased with myself. I worked solidly all day and completed an application to fund my film. The process has been arduous and I’ve been working on it for a while. 5000 words mostly about how my film will engage the public with biomedical sciences. Now I’ve got that massive piece of work out of the way I can use it as a template for other applications.
Day 72 April 23 2013
God! What an extremely stressful day. Today was a clinic day. Firstly I forgot my trial drugs which meant that my mems cap couldn’t be downloaded. That was a big black mark against me.
Day 71 April 22 2013
It’s been harder to write this blog mainly because I’m tired and humourless. My life is more a list of things I haven’t done than things that I have. Both my brothers had their birthdays this weekend. I didn’t make it to my big brother’s lunch with his friends in Soho on Friday. Then I didn’t make it to his family lunch in Sussex. I did make it to my little brother’s house yesterday for his birthday. Although I enjoyed seeing everyone I felt tired and heavy and empty. I mostly chatted to my 7 month old nephew.
Day 67 April 18 2013
I’m dragging myself through this week. The better weather persuades me off the sofa which is good and bad. The bad weather is an excuse to hide away. The good weather makes me feel guilty if I’m not out.
Day 64 April 15 2013
I’ve been exhausted the last few days. I’ve woken up with sore, tired body and mind. I’ve not bothered with the yoga. I felt like yoga would make me feel worse, not better. On Saturday I cancelled the filming I was supposed to do as my headache was back. On Sunday I didn’t go to see my brother. I had wanted to go to his house. The sun was out, his garden is a suntrap but most of all I wanted to see his children.
Day 60 April 11 2013
Today I went into the offices of Dartmouth Films who I’m making my new film with. They are in Somerset House. It’s a great place to have an office. They go to all the exhibitions at the Courtauld Institute and they see all the gigs and outdoor film screenings for free.
Day 59 April 10 2013
Yesterday I went to clinic. I’ve kept up my 100% compliance record. I was relieved to hear this because I’d made a mistake on the day the clocks went forward and taken my pills an hour and a half early. I’ve only got 4 weeks left to go now.
Day 57 April 8 2013
Today I went to a meeting at City Hall about HIV prevention. Some of the behaviours that lead to HIV infection lead to HCV infection too. The advent of club drugs, GBL, crystal meth and Mephedrone is calling for new strategies. The meeting was called to explore what those strategies should be and how they could be implemented. It was interesting but I ran out of steam an hour before it finished and had to leave. I tried to eek it out for as long as possible. David Stuart from The Club Drug Clinic even walked me around outside for a bit to clear my head. When my head started swimming and I couldn’t take anything else in I left. Sometimes when I’ve tried to push through exhaustion it’s taken a few days to recover.
Day 56 April 7 2013
Yesterday my brother and his wife held a family party for Louie. For years now we’ve said how we’d celebrate once he got the proper all clear. I’ve always said I’d buy him a bottle of champagne. Everyone had the same idea and there was enough champagne to water the whole street. My sister- in-law is a brilliant, creative cook and she laid on a feast. My 4 year old niece said it was a banquet.
Day 53 April 4 2013
Since visiting the family I’ve been a bit worn out. I have to work hard to feel normal at the best of times. On this treatment it means being even more vigilant. A change to my routine or different food for a few days can knock me sideways.
Day 50 April 2 2013
There are a million miles between the words clear and cured. And I wasn’t prepared for the wave of emotion that the word cured would trigger. I don’t think I ever dared believe deep down that this could happen and my reaction was primal.
Day 48 March 31 2013
Yesterday I went for a long walk with Louie and my dad through the woods. Each time my father gave me an option to take the short way I took the long one. Louie and I chatted about the huge difference between this treatment and the last one, i.e. long walks in the woods were not an option before.
Day 47 March 30 2013
Yesterday was my birthday. I came down to my folks to celebrate and to be here for Easter. I’ve got a huge family. With even just half of us here the place is full.
Day 43 March 26 2013
Today was a clinic day. My son Louie came too. He was getting his 48 week post treatment blood test. I’ve never spoken about his hep C publicly but now he’s 19 and clear (fingers crossed) it’s OK to. When I finished my treatment in 2005 he started his 3 months later. While I was still making Louie, Me & Hepatitis C, he was doing his treatment. He was taken off it after 7 months because his viral load hadn’t budged. He did the phase II AbbVie trial last year and went clear in the fifth week. He has stayed clear since. I need to be clear by now to continue on the trial.
Day 41 March 24 2013
You won’t believe what happened on Friday after writing about my escalator neurosis. On my way home there was a school trip of about a hundred 15 to 16 year olds all piling onto the escalator two a breast.It was like I was being tested by the spirit of the underground. And I failed the test.When I got to the bottom of the stairs a cluster of boys were pushing and shoving each other. One of them sent me flying. I recovered my balance and shoved him back, like the cranky old witch of the underground.
My son met me at Clapham Junction and bought me tea, cake,flowers and made me feel human again. That good deed was undone when he decided to stockpile all the glasses and bowls from our kitchen in his bedroom. It’s not been the best of days. The washing machine flooded.I put my second cup of coffee to warm in the microwave and left it in there for 10 minutes. And there’s no let up with the cold.
Day 38 March 22 2013
I can’t say I’ve enjoyed this week much. I’ve been dogged by fatigue and feeling a bit toxic and dizzy a lot of the time. I realise when I leave the house that I’m quite irritable too. If my son reads this he’s going to be asking why I only realise this when I leave the house.
Day 36 March 20 2013
It’s been a mixed start to the week. Monday was tough. I had a hatchet headache all day long and stayed at home feeling dreadful. Tuesday I felt fine, went into work early, spent all day there and got lots done. Today I’m drained and exhausted.
Day 34 March 18 2013
I had a really good, clear headed weekend. I’ve been persevering with the kundalini. The breathing and meditations feel great seated in my 3rd floor flat in Battersea. I’m lucky enough to have windows that extend a whole wall and round a corner. When the sun shines I’m bathed in light and the yoga feels uplifting.
Day 31 March 15 2013
I’ve had a headache for 2 days now. I think it might be because on Wednesday I did a yoga class that I found on Youtube. It looked like it was going to be a soothing, seated breathing class. The woman taking it wasn’t dressed for moving around much in a long white dress with a petticoat. It was called Kundalini Yoga Kriyas for Detoxification. The poses which included scissoring your legs for 6 minutes and fire breath in upward plank for 4 minutes, collectively crippled me. I could hardly lift my legs yesterday without crying. The teacher didn’t do the poses but kept a sadistic eye on her students throughout the class. The last time I was in that sort of pain was when my school friend Jonathon Rollinson tricked me into a cross country mountain bike ride over the Sussex Downs. He told me were going on a gentle ride along the sea front.
Day 30 March 14 2013
Last night I gave a short presentation to a group of mostly HIV activists. It got off to great start when someone across the table barked at me that’s a really bad way to start a presentation. I’d made the mistake of asking the room if I could assume they all knew what hepatitis C was? He had a point I suppose. He apologised if he seemed aggressive. I said, yes he did seem aggressive and carried on.
Day 28 March 12 2013
Today I went to clinic. I got given a month’s supply of pills. My favourite doctor Ivana was there. She told me that I had raised triglycerides, which is a sign I’m taking ritonavir (one of the treatment drugs). I was excited for a moment until we looked at my pre-treatment bloods which showed they were raised before. The excitement was short lived; I’m just unhealthy it turns out.
Day 26 March 10 2013
About half an hour after taking my pills, a strong urge to lie down and sleep comes over me. The last few days I’ve given in to this. I don’t wake feeling fresh after this extra sleep.
Day 23 March 7 2013
A while back I was contacted on Facebook by an old friend I hadn’t seen since the mid 80s. He was part of a group of people I spent a lot of time with when I lived in Spain. I used to like him. He was a few years older than me. He was kind when my best friend died. He was also a bit wild, which is a quality I’ve always valued in a friend. When I moved away I lost touch with him. He’d come across the film I made, Louie, Me and Hepatitis C and got in touch to tell me he had hep C too. I was a bit spooked by this news. I must have caught it around the time that I'd known him. He told me he had the same genotype as me.
Day 21 March 5 2013
The good news is I’ve got a bit of a rash. Rashes are a characteristic symptom of protease inhibitors. Either I’m manifesting very convincing placebo effects or I must be on the right drugs. I was thinking that I looked a bit spotty until my son pointed out that it looked like I have a rash.
Although I’m pleased to have one I’d be happy if it wasn’t across my face. It’s on my forehead with raised bumps above my eyebrows like I’m going to sprout a Neanderthal type brow.
Day 20 March 04 2013
The first cut of the promo is finished. I took one look at the way my hair looks in it and asked my sister-in law to chop it all off. She’s not even a hairdresser, she’s a photographer. So after lunch yesterday she got the scissors out and hacked it off. I had way too much hair, it was everywhere.The pic is my hair on the floor. The scissors are there to show just how much hair came off. My son says it looks like a dead rat. I feel lighter.
Day 16 Feb 28 2013
Thursday was a hard day. I had no energy and a foggy head. Our website wouldn’t allow me to upload anything, hence the late blog post.
Day 14 Feb 26 2013
Today was a clinic day. I remembered to take in my drugs and I had a 100% compliance reading. My nurse Jess, downloaded the times of day I’ve taken my drugs from the mems cap. I dropped the mems cap in a glass of water last night. I was relieved it still worked.
Day 08 Feb 19 2013
My picture today is called Still life with Pills and it represents my first empty blister. I have another eleven to go.
Day 06 Feb 17 2013
I’m pretty sure I’m taking the real drugs. I’ve had an almost constant headache. It doesn’t really bother me and it’s not intense (except in bed).
Day 04 Feb 15 2013
This is my regular view.
I’m shattered today. I think I’ve been on a high all week. I’ve tried to make a point to myself by walking a lot and working a lot and arranging late meetings.
Starting this treatment has allowed me to let the mask slip. I’ve never felt right since my last round of treatment. I’ve steadily got more and more tired. Felt more and more aches and pains and seen fewer and fewer people. Life has become really quite narrow.
I can’t rely on myself to turn up to work every day. I never arrange meetings past 4o’clock as I’m highly likely to cancel them. And I can count on one hand how many times I’ve been out in the evening over the past year.
Day 03 Feb 14 2013
Because I took my first batch of pills at 1.45pm I had to take my next lot at 1am. Yesterday it was 12pm & 12 am and today it’s been 10am and I’ll take them again at 9pm. I’ve got to get them down to a manageable 7am – 7am. This morning I took them on the way to a meeting while I passed through Victoria Station. I took them with a yoghurt that I really didn’t want, but you have to eat some fat with the pills. Last week I was on the 5:2 diet and this week I'm scoffing peanut butter in bed at 1am in the morning.
Day 02 Feb 13 2013
The last time I did treatment was in 2005. It was a year-long slog on interferon and ribavirin and I didn’t ever go clear. This time it’s 12 weeks and with no interferon but with protease and polymarase inhibitors. This feels like a walk in park.