rich4thought

No news

2011-10-05T06:57:00.000-07:00

Slightly disappointed about yesterday's trip to the hospital. I thought they were going to give me a viral load result from my two weeks blood test, but they did not take one! The test is clearly very expensive and they only do it when absolutely necessary. So, still no idea how the treatment is working. I can confidently say that I will know next Tuesday. The all important blood has been extracted and is laying in a lab somewhere in St Thomas's Hospital.

Hope

2011-10-02T13:00:00.001-07:00

Well, as week four enters it's final days I am feeling hopeful. The recent blood test which revealed my baseline viral load as 1 million was good news on two accounts.When I began treatment before it was at 4 million so one assumes 1m will be easier to be rid of. Secondly 1m was the best drop that I achieved last time and I am pleased that my body was able to keep it at that level - one would normally expect it to rise back to previous levels after coming off treatment. If I do manage to knock the virus down to undetectable, this evidence implies, that it will remain there.Of course the fact remains that last time I could not get rid of that last 1m, but I think I was just exhausted by the process. This time it has not been so onerous. Naturally all hinges on my week four blood test. However I should get some kind of indication how things are going on Tuesday because I will get my week two blood test results back then and I'm hoping for a significant drop in the load. I have been pretty tired this week. Wednesday and Thursday as usual were the worst. Lots of headaches this time. I do worry that as the weeks go on there will be a culmantive effect. That happened last time. The sunny weather helped me keep a positive mood though. I'll post how it goes on Tuesday. Fingers crossed.

Week Two

2011-09-15T06:47:00.000-07:00

I'm into my second week and feeling positive. Having read through my blog regarding the first few weeks last time, it seems the symptoms are much the same. Flu like symptoms after the interferon injection on the Tuesday night is followed mainly by a lack of appetite and lack of focus to do anything. I'm already fed up watching TV. The best thing to do seems to be to give myself some simple, short, task and then rest. I am keeping to a strict liver friendly diet for the first four weeks. I want my liver to concentrate on fighting the virus not digesting cheese and meat. I am also taking tons of minerals and vitamins to prevent all the mouth ulcers, skin rashes and hair loss that happened last time. Only time will tell if this strategy works.

One More Try

2011-09-05T03:22:00.000-07:00

I am starting another round of Hep C treatment tomorrow.

I was unsure about recording the ordeal again in this blog - wondering whether I could be bothered to write down the ordeal all over again let alone expect others to read it. However, I do know that many friends and family who will want to know wants going on (God bless you) and this saves me repeating the same info over and over again. So I will keep a record, but it will be less graphic than last time, just the basic facts as to what's going on.

Let me start here by explaining why am I doing it when I said, after the last time, never again. First off is - the fact that according to tests done at the beginning of the year, the sclerosis in my liver has taken quite a nose dive. Second - there is a new drug: Boceprevir (also known as Victrelis) which improves the chances of success for patients who did not 'respond' satisfactorily first time by stopping the virus multiplying. (I am amongst the first 10 patients to be given it in the UK) Thirdly - the treatment protocol has changed, for the better.

The new treatment therefore will go like this.

Phase One: For the first four weeks I will be on Interferon and Ribaveron just as before. In that time I need to get what's called a one log drop which basically means if you begin will 7,000,000 viral load you've got to achieve a drop to 7,000. If you do not get to that then they stop treatment because they know its not going to work. As I did not achieve a one log drop in 4 weeks last time I think the chances of success are minimal for me and the whole treatment could be over by the beginning of October. Of course that's my head speaking, my heart say why not success this time, anything is possible.

Phase Two: If you get through phase one they put you on the new drug Boceprevir for four weeks. At the end of this time you are expected to have achieved a viral load of zero. If not, again they will stop treatment because they know it will not work in the long run.

Phase Three: If I am lucky enough to pass the eight weeks with a zero load then treatment on all three drugs will continue for around another 28 weeks making a total of 36 weeks treatment, though it could be more.

The good new is that is past results indicate that if you get to phase three there is a whopping 80% chance of success. Which I think is the grim realities of being on treatment. Who knows this time next year I may be a man transformed.

I'll let you know how I get on.

Feeling Okay

2010-09-18T02:15:00.000-07:00

It's been a year and a half since my interferon treatment ended, and I thought it was about time to report here how things are. After all there may be others out there in the blogosphere who have also found their treatment prematurely curtailed due to a poor response. Well, I can report it's not all bad. I actually feel better now than in a long time. I seem to have more energy and lucidity than before treatment. The reason for this remains a mystery to me. It would be nice to have a viral load test to see if it has remained at a lower level than before the start of treatment, but the drug companies don't seem to fund this kind of follow up, therefore the hospital won't do it. Anyway bottom line is I'm feeling okay. Sure I still need to rest some afternoons and if I get a cold or virus it really wipes me out, but otherwise I can live with it. That's not to say I wouldn't like more energy! It would be great to feel well enough to believe I could work again, but with all the things wrong with me, on top of the hep C, I never know how I am going to be one day to the next. It's very frustrating. Thankfully I have my writing. On that subject, I will have a short story appearing in the anthology HOOVERING THE ROOF 2 which will be available in November. And the first draft of 'Mr. Reed' is nearly finished. So watch this space...

Deathless Extract

2009-09-14T09:19:00.000-07:00

Thought it was about time I got in the saddle again.

An extract of my novel did get printed in the magazine 'One Eyed Grey' it looks very nice. Only problem is in the contents page they gave me the wrong name! I am called Richard Woodward instead of Woodhouse. Rather frustrating. I have agreed to do some readings at the up and coming Ghost Week through the mag. so perhaps that will be of more use. I've ben very busy doing stuff for the East Dulwich Writers Collection and being on Jury service. I'll post more about both of those soon.

Deathless update 01

2009-05-27T04:55:00.000-07:00

Well, the London magazine - One Eyed Grey - is featuring an excerpt from the book in its July issue. Which is nice. And Lulu have just contacted me to say they have chosen the book to go on the market place at Amazon.com. Which is also nice. So things are ticking along.

I have been fighting off some virus (other than the usual) for the last couple of weeks so energy levels low and no writing to speak of. However this week I have been able to sort out the time line of 'Mr. Reed' and write more.

I hope to start recording the Deathless pod casts next week. Though I am concerned about the gastroscopy I am having done on Wednesday. I gather its not very pleasant. The doctors are just checking I have no intestinal bleeding. I think its very unlikely I have.

Never realised what a minefield web hosting is until today. I wanted to get a proper domain name etc. But its all so confusing I think I'll stick with my ISP free one for now.

Deathless is here

2009-05-11T05:56:00.000-07:00

At long last I have managed to make my first novel, Deathless, good enough to be available to the public. Get it through the publish-on-demand provider, lulu. Follow the link on the right and buy it!

Deathless has not yet been picked up by any established publishers. The time has come for a second round of sending the manuscript out I guess. An onerous task. I have had an encouraging email from Macmillan new writers scheme but have yet to hear anything concrete yiegh or niegh. And the London Publication 'One Eye Grey' look like they may include an extract in their next issue. Fingers crossed.

On my website I now have a trial recording of the opening of the book. It is my intention to read the entire novel and put on itunes as a podiobook. If I release one a week it will take about a year to complete. Now I have sussed out all my recording equipment I just need to record the first four episodes. If the response to those is good then I'll carry on. It may not make me any money, but it should raise my profile.

I have stalled somewhat with my new project 'Mr.Reed' as I have been pondering on it. The voice I originally used for the piece now seems overblown. I wanted to bring in a Gothic tone but now feel I have gone about it the wrong way. This means even more rewriting!

The other thing that has been delaying me is the need too write an account of events from Louise's perspective. This has been quite a challenge because obviously its female. hope I can pull it off. After reading 'Lucky' by Alice Sebold for inspiration I have begun to write. Though the content of Lucky bares little resemblance to Mr Reed, the tone and style have been helpful. It occured to me how my novel is almost the reverse of Seblod's memoir. Her life was completely altered by meeting a bad man, in mine Lousie's life is altered from meeting a good man. Though so different there are resonances. Watch this space...

Three Months Post Treatment

2009-03-31T10:45:00.000-07:00

It is hard to believe so much time has passed. I feel guilty not keeping the blog going more regularly despite having little to say either medically or regarding Prometheus. However, there are few thing worth mentioning now.

I'll put the medical matters here and the writing ones in a separate post. I saw my liver specialist today and gained a better understanding as to where I am. He confirmed that my recent fibroscans show that I have scarring of the liver. However, combined with my normal blood results he does not feel it is severe and puts it in the 'A' category on what's called the Child Pugh score (see http://en.wikipedia.org/wiki/Child-Pugh_score).

This comes as no surprise as someone who has had Hep for 30+ years. He did say that when you get in the 'B' category they begin to consider liver transplant. I asked was this inevitable. He confirmed it was. As to how long my damaged liver will last it is clearly hard to say. He said the average would be around ten years. Perhaps if I'm lucky I'll reach 65. Then it will be time for a change of liver. I asked how long that new liver would last, again he said about ten years.

As for Hep C treatment. There is nothing they can do at present. There are new drugs coming through which should be available in three years or so, but they only have a 30 percent success rate at the moment. Will it be worth the heartache? How many more years will it really gain my worn out liver? Well I'll have to make that decision nearer the time. I was hoping for a viral load test, but he said it would not be worthwhile. Apparently the level of the Hep C virus has no bearing on the progression of the disease; unlike AIDS. This explained to me why they stopped treatment even though my viral load had dropped so much. Unless its at zero its not worth a lot apparantly.

All that said. I have to admit to feeling better than before I went on treatment. Its been years since I have had such a clear head and such sustained energy. I have to admit to being pleased. It is one of the reasons I have achieved so much with my writing recently (see next post). Of course it comes with the fear that it will not last or is an aberration. While it is here though I intend to enjoy every minute.

Feeling Better

2009-01-18T03:52:00.000-08:00

What a relief it is to not take the interferon and ribaviron. My energies are returning more every day and my brain beginning to stutter into life. Hooray. Got a well timed email from my Chinese Medicine Practitioner and have arranged to see her on Feb 2nd. She will put me back on track. TCM has been very helpful to me combating Hep C over the years and I hope it will aid me in my quest to keep my viral load down as low as it is now. A viral load of 200,000 may not be good enough for the docs but if I can keep it down to anything like that level I'll be a happy man. I am lucky the Yuan Clinic is so close. (see link)

As for writing, I have printed off the whole of Mr Reed with a view of reading the whole thing prior to starting work on a Second Draft. Naturally, I have still been thinking about Prometheus and intend to develop detailed character backgrounds on the main characters. I want them really be grounded in me before beginning to write. I'll post the backgrounds here.

End of Chapter One

2009-01-07T13:32:00.000-08:00

Well, that's it then. Treatment is over. I saw my nurse, discussed all the ins and outs and, despite my viral load steadily reducing, my Log Number was way too low. As their Hep C expert said in his email, 'continued treatment would be futile.'

Having invested so much in this process I am naturally very disappointed. I recall at the beginning of researching Prometheus the issue of false hope arose. Now I understand it more deeply. It is odd how the mind creates all these unrealistic expectations. Even since finishing treatment I have had thoughts saying, 'The viral load is really low, perhaps I can clear it completely without the drugs from here, that would be one-in-the-eye of the doctors.' I guess its good to be positive, but one wonders where madness lays.

Now, I need to be monitored to see what the long term effects of this treatment will be. At least I have learnt this form of treatment is of no benefit to me. Of course, there are rumours of new treatments coming along that may help me. I expect at some point in the not too distant future I will be going through all this again. Dare I hope for a positive outcome someday? As Chris commented, this is only success postponed. Though I am aware my age is against me.

Speaking personally, I just want to get my life back. This difficult process has made me value living much more. It is clear my health is unlikely to ever improve much. This is the fittest I will ever be, so I need to enjoy it while I can. As long as my liver holds out I am determined to experience and enjoy this world.

As for the blog, I feel this is only the end of Chapter One. I will concentrate on the development of the novel until the new treatments come along. My normal Hep C state is at least better than being on Interferon, so hopefully I should begin to write more. Completing 'Mr. Reed' and 'Prometheus' has become even more important for me. They will be something worthy of leaving behind.

To everyone who has read and commented on the blog so far. Your support has been invaluable. I cannot express how grateful I am for it. I will try to continue to make the blog of some interest to you.

May Fate be kind to you all and Evolution bless your offspring.

This is not The End my friends.

Richard

The Results

2008-12-19T10:57:00.000-08:00

I saw my doctor this afternoon regarding the week 12 results. The news was not good. The patient has to have a 2 point reduction in what they call the Log Value. Mine was only 1.24. In addition my viral load was much the same as at week 6 - it really should be down to zero by now. This means continued treatment will probably be unsuccessful. The doctor said said he would confirm the situation after talking with the liver specialist, "as he's the expert"
Thankfully L was with me when I received this news. I put a brave face on it but as we left the hospital I felt devastated. Something in me had been convinced the time was right for treatment and that it would work.

When I got home I soon received the call. They doctors have decided to do another blood test on the 29th of December to try and discover a more definitive result. This course of action came as a surprise and I do not know if I feel happy or sad about it. Just before the call I was thinking, okay no more horrible drugs lets have a good Christmas maybe even a glass of wine.

Now I fear getting through this stage. I am what is called a slow responder. This may mean remaining on treatment for up to 72 weeks and with a reduced prospects of success. Is it worth it I ask myself.

Inside I had created this future where I would be Hep C free, renewed with energy and ready to get Mr. Reed published and work hard at being an author. Now I am faced with a very different future.

And where does this leave Prometheus? Failier was not in the script. The story can't finish after 12 weeks. He needs to be free of his suffering. As my byline says above this novel idea was meant to be a positive outcome whether treatment succeeded or not. I just never unexpected it being truncated so soon. It just does not feel right. Perhaps the gods are playing with me and there will be a happy outcome after all.

The only good thing

SUKI

2008-12-15T09:44:00.000-08:00

The family experienced a tragedy on Saturday. Our cat, Suki, died.

L and I were woken up on Friday morning by Bessie yelling. Suki, who sleeps in her room, had just sneezed blood all over her. It was clear the cat was having some difficulty breathing, otherwise she appeared okay. L and B went to work/school. Despite feeling a rough that day I managed to take Suki to the vets.

The vet thought it might be a fighting injury on her nose that was inflamed etc. I came home with a bunch of antibiotics hoping for the best.

That evening I retreated to the backroom for some peace and quiet, ending up falling asleep there. B went to a sleep over. L found Suki in the night a little distressed and took her to bed with her. Saturday morning I was woken up by L yelling. Suki was in great distress; unable to breath or use her limbs properly, so was L.

There followed a chaotic scene as we wondered what to do as our vet would not be open for another hour and a half. In the end we rushed to the nearest emergency vet. Within minutes we were told, by a very sleepy vet, that she had suffered a brain aneurysm. Her eyes no longer responded to light and she had loss the use of her limbs. We were advised to put her down.

The speed of it all was quite a shock. When B came back from her sleep over she let out a primal scream I'll never forget. The rest of the day was spent in almost permanent tears. 'It's not fair, its not fair, she was so young,' B kept saying.
I tried to explain fairness did not come into it.

A documentary I had watched the day before came to mind, about a catastrophe which took place 2,500 million years ago. The earth's crust exploded in the Russian Stepps causing such global warming that 95 percent of all life was wiped out. Ninety-five-percent. Where was the justice in that?

As ever, I am finding, everything comes back to Prometheus. In 'Prometheus Bound' by Aischylos, the only work devoted entirely to Prometheus to have come down to us from antiquity, the old god is portrayed as someone who is suffering unjustly.

'Oh holy Mother Earth, O air and sun, behold me. I am wronged,' he cries from his rock.

Professor Kerenyi explains, 'But though man suffers like the beasts, his special mode of existence requires him to suffer with a sense of injustice.'

Where this sense of fairness/injustice comes from is an interesting question. Is it a human construct or something that actually exists in the realm of the Gods and the universe?

Perhaps it was not fair for Suki to die so soon. I will miss her. She kept me company in the many hours I spend in bed. She may have been a bit simple but she was very loving. Life seems such a fragile thing.

Being a good little god myself, it is clear to me that in the book Heather will have to own a cat called Suki. It will be good to remember her that way. It will also bring in some of the themes discussed above.

God bless you Suki - wherever you are.

Twelfth Jab Of Christmas

2008-12-12T04:43:00.000-08:00

So here I am, a quarter of the way through, I can't believe it.

Saw my nurse yesterday, she was happy with my last blood tests. Everything has stabilised and there have even been some improvements. She also took blood for my all important week 12 test. I am hoping the results will be ready next Friday (19th)when I am due to see the Doc. If my viral load is down to zero then treatment continues, if not, it is likely I will have to stop.

Though I have no scientific basis to say this, I feel its all going to be okay. It is very difficult to isolate my Hep. C symptoms from my treatment symptoms, but there are times when my brain seems to be working better than it has done for years. So I am positive. Only the lack of energy remains disabling. My appetite is far better than at the beginning - I am rarely nauseous these days.

This week has been pretty good. Though I am still sensitive to too much noise etc I am able to cope with more. Watching Heroes exhausts me though. I gather Gordon Brown watches Heroes too. Only he thinks he can save the world without saving the cheerleader.

Talking of TV. Did anyone understand the ending of Little Dorrit last night? I've never read the book and was totally confused as to what the BIG secret was.

Archetype of Human Existence

2008-12-03T14:15:00.000-08:00

Be warned, I'm going to start pontificating now. I have started some background reading on Prometheus; thoughts and ideas are hitting me fast. I see no reason not confuse you too.

I am halfway through 'Prometheus - Archetype Image of Human Existence' by Carl Kerenyi. The Professor clearly knows his Greek and it has been very helpful. The initial points I have taken so far are.

1. "Prometheus, founder of the sacrifice, was a cheat and a thief; these traits are at the bottom of all the stories about him."

This statement came as a bit of a surprise. Prometheus now-a-days is considered a clever and brave hero. This attitude is certainly seen in the Romantics handling of him. Why the change? Does it resonate with having less respect for God?

2. The Titans, of which Prometheus was one, were a group of Gods that came before the Olympians. Zeus usurped them. This may explain why followers of him would suggest Prometheus was a thief. New religions tend to bash the old ones.

3. The Titans seem to represent darkness, "exuberant virility", boundless pride and violence. Prometheus in particular had associations with the moon. Where as the Olympians were light.

4. The liver, a large dark organ, represented darkness, Zeus's eagle represented the sun. The eating of the darkness by the sun and then the regeneration of the darkness throughout the day makes Prometheus's ordeal on the rock profound indeed.

5. Prometheus was not that clever. Zeus was well aware the suffering that would follow all his trickery and theft. Like the humans he created he believed his ingenuity and guile would enable him to fool the Gods. But his actions always had profound negative affects. He appears not have the 'forethought' attributed to him for he was unable to see the full results of his actions. Perhaps his name has a touch of irony about it.

Clearly he is a complicated character. I am thinking that in my incarnation of him he may have learnt some humility after his trials. Even remorse for what he has done to mankind. Unfortunately, in his desire to make amends, he resorts once more to his innate trickery. How human. Not content to serve.

Five days of Flu

2008-12-03T13:58:00.000-08:00

It had to happen, I guess. Last week I mentioned my nasal passages were playing up. Well, from Thursday on I have really been laid up. All the usual flu symptoms though the worst thing was having a head on fire and being totally unable to breathe. As I am pretty anaemic already struggling for air is deeply unpleasant. Particularly when eating and trying to sleep. A sense of anxiety is always beneath the surface. The broken nights really got to me. Thankfully, last night I had a good sleep. Though my nasal passages are still dodgy I am at least able to breathe now. As I have said in the past you can never take for granted what you will be hit with next.

I know this is not very interesting but I record these things for the book's sake.

Writing Prometheus

2008-11-27T10:16:00.000-08:00

For sometime I have been pondering on how to portray Prometheus. He is a God after all. And who knows what they are? To make such a figure grounded and believable will be tricky.

Technically, I have decided to approach him as if he were me. Don't worry this is not delusions of grandeur. What I mean is, an author. In a way I am a god to the characters in the book. Like Prometheus I create them and decide there fate. Prometheus is therefore the embodiment of me in the book. He would be able to do all the things that I can in a book. Alter scenes, people, things, himself. This echos the ability gods have in myths to transform. He also knows the plot. (He's not called, forethought, for nothing)

Of course there must be limits to these powers. When a character in a book begins to get a life of its own, even the author is limited by what you can do with them, because they have there own momentum. They can even alter the expected outcome. Prometheus will also be limited by his his damaged liver and lack of energy.

Does this make sense?

As for Prometheus's character I need to do more reading I feel. However there are characteristics which are already evident to me. Arrogant, mischievous, loving, burdened, selfless. (How you can be arrogant and selfless I don't know yet he does display both traits. He wants to be the Alpha God; hence the antagonism with Zeus, But will endure incredible sacrifice for Man.)

Anyway these are my thoughts so far. More to come

Week 10

2008-11-23T12:07:00.000-08:00

As week nine comes to a close I can congratulate myself for enduring a fifth of my treatment. Things have certainly settled down since the beginning. My nausea is almost gone, the tiredness bottomed out, and mentally I seem to be coping. I just wish each day, each week, would be more predictable, but that now seems unlikely.

Last week I suffered with aches and pains in my bones. Very flu like. This had not been much of a problem before. The sore throat I have had for weeks is getting worse including ulcers. In fact the whole of my ears, nose and throat are unwell. I sneeze all the time. And all the nose blowing has now led to nose bleeds. All of this I can cope with if I have some energy occasionally. I have not been very good keeping up with my factor 8 injections to stop my bleeding. Not that I am doing a great deal of running around to encourage bleeds. In fact I cannot think of a single bleed since starting treatment, which has got to be good news.

The family seem to have come to terms with it all very well too. We have had our tough moments, and yet, in some strange way, the process is making us even closer.

Introducing Heather Clay

2008-11-12T13:34:00.000-08:00

It has occurred to me that Prometheus, possibly more than any mythic figure, represents Life. Specifically Human Life. Having considered this whilst pondering on what the theme of my book should be, I have concluded it too should be about Life. Quite a challenge.

At last I have chosen a name for the female character. I decided my initial ideas were too prosaic, too mannered. She represents all of us. Human beings that is. So I felt she needed a more ordinary name. Hence my decision to call her, Heather.

As for the surname Clay - that's what we are meant to have been moulded from before being given the breath of life.

Heather is a medic in her troop. Though slight in build she is wiry, resilient, bright and bold.

I have also been toying with titles for the book. Such as:
The Spark. A Life of Its Own. and Prometheus Found.

Not Dead Yet!

2008-11-10T09:12:00.000-08:00

Apologise for the last entry seeming so dark. In fact I was not feeling down or anything morbid, I was genuinely interested in whether this experience of ebbing away had a parallel during death. Thanks for kind words.

As I have been unable to write with any focus, I have been concentrating on thinking and imagining my stories. Two days ago I, at last, cracked the ending of, Mr. Reed. It had been vexing me for sometime. Suddenly a simple solution totally in character, and plot, came to me. Now all I need is to write it!

Regarding Prometheus. I am itching to write something. I have scenes in my head I would love to put onto paper. In particular the moment when the soldier's find Prometheus. I keep thinking what a strange thing it would be for a female soldier to discover this massive god lying there naked. When I consider how I would feel if I came across goddess lying naked before me my imagination naturally goes into overdrive. Despite the oddness of the situation there would have to be some kind of sexual tension there for the woman. This perfect specimen of manliness is also in distress, he needs her help. So, she would also feel compassion for him and be protective.

Then I need to consider how would the male troop members react? Rude jokes, black humour. Taking the Mick out of the woman. Despite any japes they would have to be practical. They are on a mission after all and have to work out a way of releasing Prometheus. Will they believe him when he tells them a giant eagle will be coming soon?

As you can see it is all ripe with possibilities.

I have decided to do it in third person. I do not have the confidence to write from either Prometheus or the woman's voice. How to begin the book is proving more elusive. I want to set up the rocky terrain, the weather, the atmosphere. Give a little background to the characters in the troop etc. But I don't want it to feel like all I'm trying to do is get to the discovery of Prometheus. The initial journey has got to have merit within itself. Despite having done little research on Prometheus and female soldiers. I think I may try a few sketches and see where it takes me.

Now wasn't that a cheery blog to set before the king? :)

Back To The Sea

2008-11-08T08:18:00.000-08:00

Been a tougher week than I had hoped. After the usual bad days (Mon-Tue) I expected to bounce back. On Wednesday, though a little dazed, I did manage to do a few things. Yet since Thursday I have had precious little energy. I am sleeping a great deal. Once, I would have become negative about this, but now I see it as a potentially good thing. My body is clearly still fighting the dreaded virus.

That said, the psychological challenges are hard. As I have discussed before, not being able to 'do' gives one's ego a real bashing. No bad thing one might immediately think, but the issue goes deeper. If one does not have the energy to invest in displaying one's personality, what do you become? You are like a wave at the end of its ebb; sinking back into the sea. I wonder if this is what dying feels like?

The Purge

2008-11-01T08:28:00.001-07:00

I have not mentioned the result of my 4 week test. My viral load has dropped from 4.6 million to 1.8 million. This is good news. The challenge now is to get it down to 0 by my 12 week test. This was one of the reasons why I was determined to up my treatment regime.

I have been wondering how the interferon actually eliminates the virus and actually gets it out of the body. I presume the virus is removed from the body either whole or broken up somehow. It makes me realise that this is a purge. Last week my nurse was saying that the virus is not just in the liver but everywhere in the body. This I suspected. This is why the treatment is so long, to ensure the interferon kills every last virus in every cell that it can, because if there is any left it will simply multiply and return. So it is clear to me that I have to help this killing and purging process. It seemed evident to me that my quest to feel “back to normal” while on the drugs was wrong thinking. The body is going into a particular “abnormal” mode, in order to eliminate the virus - as with flu. This process needs to be embraced. Also I need to aid the interferon getting to every cell of my body so it can do its stuff. This is why I must not put too much additional pressure on my liver by consuming too much crap. Keep relaxed. Do not overuse my precious energy. Exercise and massage to get the blood moving into the cells. Saunas and skin brushing to help the skin eliminate toxins. Well, that’s the idea. Lets see if my legendary procrastination will rear its ugly head.

The French Trip

2008-11-01T08:00:00.000-07:00

Just got back from La Belle France. Hence three new posts. Wish I had read Chris's comments on previous post before leaving. Explanation will beome clear when you read the following log I made during the trip.

AAAAAAAAAAAGGGGGGGHHHHH!!!!!!!!!!!!

Arrived in France Thursday after a very pleasant journey. My fears of coping seemed to have been premature. Tired but happy I begin to unpack. It is then I discovered I had forgotten my Interferon injection pen. I couldn’t believe it. I searched through my case over and over - no, it was not there. As the medication has to be in the fridge I knew I had to leave it till the last minute to pack. Even so, to have left it completely is ridiculous. It is naturally important to keep the Hep C treatment as consistent as possible. I began to beat myself up with admonishment, aware this is going to have consequences. I speak to L. She tries to calm me down and promises to post the pen. I found it hard to get to sleep.

Today, Friday, has not turned out how I had hoped. Instead of visiting the local supermarket and mooching around I have to drag my Mum and B to the local hospital. L spoke to St Thomas’s Haemo centre in London and they said they would try to fax a prescription to the hospital here in Montmorrilion. All went well. I received a letter explaining all. The hospital said the pharmacy in the town would have the medication. It was lunch by this time and the pharmacies were closed. So off to Hyper U for shopping and a pancake. After lunch we visit three chemists. None of them had the medication. I was not surprised; its hardly paracetamol. One of them was kind enough to let me know that if they did have it, it would cost 222 euros. Certainly gave my French a good work out.

We went back to the hospital. They now explain it cannot be got in Montmorrilion and that I will need to visit the nearest city hospital in Poitiers. By this time I am stressed and weepy over the whole ordeal and cannot bear the thought of anymore driving. I will have to wait for the Interferon Pen L sent to arrive. Even though it has been sent next day delivery (£35 !) they don’t think it will arrive till Tuesday. This is not good news as it will mean, not only that the medication will be late, but I will now be in the middle of my worst reaction days when we are travelling back to Blighty.

The thing that upsets me the most, is the amount of work I have caused others. Particularly L.
Oddly, despite this trauma, the usual side effects are minimal. I am actually feeling quite human. This may simply be adrenaline, I am not sure.

Sunday.

Went for Sunday lunch at a local restaurant. It lasted three hours, which was an hour too long for me. The noise etc started getting to me. Had a nice time overall though my main meal was odd. It was Roasted Biche (Doe a deer) covered in brown spicy sauce which bore a remarkable resemblance to HP sauce. I wont try that again.

Monday Morning

The medication arrived at 10am. Hooray. I have my injection straight away - only 12 hours late. Much relieved, I spend the day in bed resting. Mum and B look after me. Got up at sunset and went for a lovely walk with Mum. It was all misty and moody. Hope you like the pics.

Thursday.
Sad to Leave France. Everyone who lives in our little hamlet is so friendly and kind. Trip home was tough. Mum and I both suffering with colds. L suprised me by meeting us at our arrival in London which was great.

Celtic Betrayal

2008-10-21T05:13:00.000-07:00

Okay I have to admit to considering myself a Celt. I know many cry its a spurious definition, but it's dear to me. I am particularly attracted to Celtic myths and legends. It irks to live in a Celtic country where children are taught more about Greek and Norse and Indian and African myths, before the wonders of Finn MacCall, the Lugh, Mannann etc.
Now I come to my point. I feel a small sense of betrayal for embarking on a tale about a Greek God. I wish there was a Celtic equivalent; there so often is, but I do not recall one. So Greek it must be.

As a sop to my conscience I have decided to give the female soldier a Celtic name. My short list is as follows. Betha=life(Scottish) Mab=Happy (Irish queen of the Faerie) Nia=champion (welsh) Oona=One (Irish) If you have any preference let me know.

300 days

2008-10-21T04:56:00.000-07:00

Sounds like a long time to go, but I am trying not to think about it. Just taking each day at a time. Things have definately settled down. I am not nearly so nauseuas as in the begining. My digestion is behaving itself. And apart from the first two days after the interferon injection I have enough energy to have the semblance of a life. I seem to function in 45 minute bursts. How people go to work through treatment I cannot conceive.

I am going to France on Thursday. The break I hope will do me good. I am going with my mother and daughter. Naturally I am concerned about the strain of the travel. We are getting on Eurostar to Lille and then TGV down to Poitier. It's the noise that concerns me. At present too much noise and light can really affect me. Once at the house in France everything will be fine because the silence there is palpable. A few days looking at the river and the countryside can only do good.

Writing is slow. However, musing in my bed I have been able to clear some technical issues on both Mr. Reed and Prometheus.

One Month Done

2008-10-15T06:56:00.000-07:00

Into the fifth week. 1/12th done. (I can see why you became obsessed with numbers Chris.) I am waiting for my countdown to reach 300 days as the next marker.

The weekend turned out to be quite good for me. My energies were definitely better. Eating still problematic, though I try hard not to miss meals. I went on my Wii Fit today and it said I'd lost 2lb since I last used it two weeks ago. That said I feel things are stabilising. I've had fish and chips twice this week, so there is a distinct possibility my weight may go up! Now that would confuse the nurses.

Speaking of the nurse: I went into hospital to have blood taken for my first viral load test since starting treatment. Results will take a few weeks to come through. This will be the first indicator as to whether the process is working. Anecdotally - by that I mean, me talking to myself. I feel beneath the symptoms of the treatment itself, there is a change happening. In particular in my thinking. I am sure if I had the energy my brain would verging on normal. Anyway I will let you know the results.

Saw my Chinese Medicine Practitioner yesterday. It was tough telling her about going on treatment, as I know she does not really approve of it. However, she was very professional, accepted my decision and said she would do all she could to support me. So, I have new herbs to try. Hopefully these will mollify the nausea and digestive system problems. Certainly the medicine has been very helpful in the past.

Fever

2008-10-10T13:23:00.000-07:00

Far from my afternoon bringing me peace and quiet I found last night I was in the grip of a flu like fever. Hot, shaky and headachey. I really felt like I was fighting off something. Apart from forcing down some nausea inducing weetabix I slept till 11am. Weak, fragile, relieved.

I look a little yellow as my billirubin is up. Nurse also tells me my platelets are down and I'm becoming anaemic. All things that are expected. L asked me to see the dietitian. Hoping she would put me on a liver cleanse/ no crap diet. But because I am losing weight the dietitian suggested I eat at least one pudding a day, crisps, chocolate, milky drinks and add milk powder to full fat milk! L is still reeling from the shock. Problem for me is that I don't really fancy any of it anyway.

Anyone ever read "Thomas Covenant, The Unbeliever" books? I have begun listening to the audio book of the first one; 'Lord Fouls Bane'. Thomas is a leper. The books follow his struggles in a fantasy world, called the land; which clearly represents his own body in the real world. It is all about fighting for health, and against disease. I find it odd that of all the books in the world I could have chosen this to listen to now I chose this.

I am finding it good company.

Tears in the Park

2008-10-09T07:35:00.000-07:00

I have just come back from a walk in the local park. The sun was out, the trees were turning gold and red, people were relaxed and happy. It was good for me too. I feel more balanced.

This week something of a pattern is been established. On Monday morning, after the night's Interferon injection, I feel tired yet still capable of activity. In the afternoon I am worn out. Tuesday appears to be my worst day. I have no energy to do anything. Wednesday energies return enabling me to cope with some activity. Thursday I have more energy again.

Having said all this, the dominating factor all the time is an organic disinterest in doing anything. This is not laziness, or procrastination; both of which I am familiar. We live in a world where "doing" is valued above everything. Idleness is abhorred. For days I have had to lay here listening to my ego chastising me. Sure I know I'm on treatment and i can easily justify the situation, but something in me fears indulging the process.

On Tuesday, laying in bed, in half dreams feeling my life had been put on hold somehow, it occurred me that there were other ways to live a life than always running forward, always doing. What about just "being"? The benefit, and curse, of "doing" is that it helps you hide from yourself. This process puts you into a very intimate relationship with yourself. When you spend days doing nothing there is nowhere to hide.

This is the reason I have become tired of myself. The thought of writing about things after it being so viscerally experienced is unappealing. I am really no longer that interested in myself. There was a time when I was obsessed in knowing all about my "self". I spent thirty years in spiritual self examination trying to become something I was not. Now, I simply wish to be what I am. I'm no angel, I'm no devil, I'm just me and that will have to be good enough for the world because its good enough for me.

I did not expect this treatment to bring back this uncommfortable psychological landscape. But it appears that when the body has little energy at its disposal it will put what remains into being rather than doing every time. So I may not build any bridges over the next year, or invent a carbon-free form of transport but I will observe this wonderful world. Why that should be important? I have no idea, I only sense it is.

Today in the park I found myself in tears on a number of occasions as the poignancy of this world hit me. There was the smile of a young boy as he ran up to his dad. He was in love and in awe of his father. His father's response was so slight, just a half smile of pleasure, but behind it there was so much pride in his son. Such simple movements, such profound meanings. I was listening to my ipod and Johnny Cash came on. A track made near the end of his life. His voice was shot to hell; notes are missed and the voice breaks. Even so, it is sublime. Its the voice of a man who has lived a life and you can hear it in every shaky note. Put it together with a sunny autumn day and you have tears in the park.

A Question Of Detail

2008-10-03T10:29:00.000-07:00

Sorry for the absence. I have found it very difficult to write anything. Apart from lethargy I have become completely disinterested in talking about myself. That make a blog like this tricky. I will expand on this later.

For now I add the following which has been in draft for sometime. Now, I see no point in polishing it and include it for completeness.

Over the past few days I have come to realise that if this blog is to perform its function I need to go into more depth. So far this has been little more than a catalogue of events. If the experience is going to truly inform the novel, or fellow Hep C suffers, it needs to scratch more than the surface. This intention, of course is easier said than done. For a start lethargy hangs like a noose around my neck. I feel thin somehow. Energy is at a premium. When I am well enough to compose my thoughts, the difficult experiences have passed into memory. That said, I am now aware of the importance of retaining in my memory what is happening to me as fully as possible. We will see what happens.

The last few days have been tough. Thursday began reasonably well. I went off to the supermarket, which is always a highlight of my week. A year ago I could barely walk. Now I have had my ankles fused I can get around without pain and it is a real pleasure.

At least it was before the treatment. Now I find my self walking around as if underwater. I appear to be slower than everyone else. I look at the quiches, unable to make up my mind which one to get or how many. Then there is the woman with a head full of cold, sneezing and coughing all over the vegetable. I can't afford to get your germs, I think. Yet she pops up in aisle after aisle like a heat seeking missile.

Then a voice shouts not far from my ear, 'Oh they've let you out then.' I turn to find its my next door neighbour. I manage to conjure up a joke, but inside I am feeling, you don't know how right you are. By the time I get to the checkout I am on borrowed time. As I wait for my turn I search for a seat. There are none. Why cant they have a small pull out seat? I curse internally. Knowing full well I am not the only person shopping who needs one.

After paying, I shakily leave the shop and go home. Wiped out I go to bed.

It is then the Ribavirin tablets start to play havoc with my digestive system. I don't think its appropriate to go into details, suffice to say, I am developing a close relationship with the WC. Since then I have hardly got out of bed. I can't be bothered to do anything. Its a dangerous scenario. Thankfully the family have been very caring and supportive. They appreciate the strain but don't allow me to dwell on things.

Prometheus never had to deal with BT

2008-10-01T12:19:00.000-07:00

Returned from the hospital on Wednesday feeling relaxed after my massage. So why did I decide to tackle the domestic admin that has accumulated?

We changed phone providers in May, but British Telecom are still sending me bills. After spending 3/4s of a hour on the phone I was eventually being dismissed by a curt employee stating they had no record of a transfer. I read out the letter I had received from them stating when the transfer was meant to take place. 'We have no record of it on the system,' came the reply. 'You will have to request again.' By this time I was not relaxed anymore. I was storming about the house grumbling. And then it struck me. The image of Prometheus having to deal with BT. The absurdity of it broke through my anger. I roared with laughter.
I am now left with the conundrum of how to bring such a petty issue into my Prometheus tale. Do they have telephones in heaven? Perhaps the woman gives him a mobile so they can stay in touch and he starts getting bills?

On a more serious note I was watching a tv programme about the Amazon. They visited the Matis tribe who have been devastated by Hepatitis. It was very moving to see these simple people bought down to low. They said it was Hep B. If so, why cant they be vaccinated? I've commented on Bruce Parry's blog to find out more.

Missed Ribs

2008-09-30T08:21:00.000-07:00

Till 6pm yesterday I was patting myself on the back, because I was not beset by the usual symptoms of my Sunday dose of Interferon. Gone was the overwhelming tiredness, gone was the lack of interest in the world. Chuffed was the word that came too mind. I've turned a corner I thought. Then I went to get my Ribavirin Tablets (Ribs) for my 7pm dose; I have all my doses in am-pm pots, and was presented with undeniable evidence that I had not taken my morning dose. My lack of symptoms was explained. I was crushed. It was too late too catch up the missed dose. I carried on with my normal 7pm Ribs hoping I had not done too much harm to my treatment at these crucial early stages. I suspect it quite common and not too serious. Annoying though.
Naturally, today, I have felt completely wiped with the usuals: lack of interest, sensitive to sensations, nausea.
At least I know it will improve through the week. Seeing the nurse tomorrow, I will be interested to know the results of last weeks blood tests.

S p a c e d O u t

2008-09-28T10:21:00.000-07:00

Feeling spaced out. The sensation is similar to being on codeine. I did not get this the first week. Its not entirely unpleasant. I feel relaxed as long as I do not push myself too much. After even a little activity I get a bit shaky/jittery. As soon as I sit it passes. Headaches have diminished over the last few days. Nausea still a problem, not as bad as the beginning of the week. My only real concern is not being able to think straight. Making decisions is tricky. I can't even decide to read a book or watch tv sometimes.
I found out today YouWriteOn.com have accepted my novel, Deathless, to publish as part of a promotion they are doing. Its good news even though its only an on-demand site. But there is a little bit of editing that needs doing and I just cant get my head around it. I tinkered with the beginning recently and I just cant tell what works anymore. Still, I've got four weeks before I must send it off.
Ummm, I smell B is cooking cakes in the kitchen. I think I will have to investigate....

The State of Humanity

2008-09-26T03:05:00.000-07:00

I have realised that if Prometheus were to suddenly appear today, after centuries of being bound, I am sure he would think we are in a pretty sorry mess. After all, he was the person who tried to prevent any ills besetting us. He failed in this and now he will see the end results. This will surely be a bitter/sweet experience. This aspect of the myth will give me an opportunity to examine the state of humanity. I don't want the book to be a polemic, but I do feel it is a significant aspect that I cannot ignore. It will be tricky to get the balance right, I can see that.

The other thing that has come to me, is that, in psychological terms, Prometheus clearly represents all that makes us essentially human. His name of "forethought" is so evocative. Forethought requires: memory, intelligence and imagination. Without these we would be little more than apes. Also, the fact he bought man "fire" is so profound. Fire is light, heat and comfort in the dark. Spiritually it represents enlightenment, the word of god, etc. All this comes from Prometheus. But why, in order to bring such solace, should he have to suffer so? What in us must likewise suffer in order to bring light to our inner darkness? The myth is telling me something here that I do not understand.

I have also been considering the female soldier that Prometheus becomes involved with in the novel. As P represent the heavenly, more fiery, aspects of ourselves, so she represents the more earthly, animal, instinctive aspects. She also has to represent ordinary mankind in general in comparison to his singular, god like, nature. It will be interesting to see how they get on.

It is enjoyable and instructive to delve into all this. However, I am aware that it will all have to be left behind when I begin to write what will be in essence a love story. The results of this pondering will have to appear by osmosis, not force.

Why Pringles?

2008-09-26T02:21:00.000-07:00

Here am I feeling hungry and nauseous all day and of all the food stuffs in the world to crave why is my body choosing Pringles? Sure I like Pringles, but not especially. What in them is making me crave them for breakfast? I've indulged the desire, justifying it by saying I need to keep my weight up. Clearly though it can't continue. I know when you feel ill you do desire treats but I've never needed to go out and buy two cylinders of Pringles before. I am supposed to see the hospital dietitian soon I suspect she will not approve. Still its better than alcohol.

L has a fluey cold which I suspect I'm fighting off too. I've been sneezing and have a sore throat. I expected this to happen at some point in the treatment, just not so soon. As a result everyone is rather crabby. But it will pass.

Forethought Planning - Note 04

2008-09-23T09:00:00.000-07:00

I've been pondering, off and on, about the nature of 'Forethought'. The brief ideas I put down before seem overblown somehow. Though I sense the basic story elements are correct I want to make the novel much more intimate than that outline conveyed. The action elements mentioned are all well and good, but at its heart it needs to be a human story (even if we are talking about a god!) I think a story that follows the ups and downs of his relationship with the woman who finds him and cares for him; especially when Pandora becomes involved, will be interesting. Set alongside that, the tensions caused by living with the effects of heavy duty drugs and his own mission of conscience to rid humanity of its ills, and I think you have something more than interesting.

The smaller I can make it the more universal it will be. We could forgive Prometheus; of all figures, to opt for a quiet life with his new found love free of endless suffering. How does he raise himself above this temptation to attempt, once more, to become humanities' saviour?

I will continue to ponder and wonder out loud on this while I finish writing the first draft of, Mr Reed; which went down very well the writers' group on saturday I am heartened to say.

Hep C Treatment - Day 08

2008-09-23T05:36:00.000-07:00

One week down 51 to go. Had second Interferon injection Sunday night. Spent all of Monday completely wiped out. It's not so much the lack of energy, more the complete disinterest in doing anything I find weird. The prospect of tackling any action, mental or physical was abhorrent. Even though this was the same reaction I had a week ago it still suprised me. Perhaps, because I was fortunate enough to have an active weekend.

Today I still feel lethargic. Headaches are a pain. Nausea bad. I visited my haemophilia nurse this morning. Apparrently, I've lost a kilo. So, I need to keep an eye on my food. Though I get hungry, the problem is that everything I eat makes me feel nauseus. I am going to have to find some way over this. Other than this she seems heartend by my reaction to the drugs so far.

At the end of October I am going to France for a week with my mother. I am naturally looking forward to it, but have to admit I am concerned as to wether I will be able to cope. It's another month away though and things should have stabilised by then.

As I look back on this first week I have to say I am relieved the way things have gone. I trust it will continue in this vien. I believe in a few weeks a rythmn will have been established and I can then begin to tick off the weeks. With the support of family, friends and fellow bloggers I really think I can do this thing.

Hep C Treament - Day 06

2008-09-20T07:52:00.000-07:00

Lethargy is with me today. Headaches and nausea too. I also felt the first passing twinges of the blues pass through me. Oh no none of that I said to myself. I noticed last night, when I became over-tired, that I was being short tempered. It is important not to emote too much even if I am feeling crabby. I don't mean bottling up my emotions, more letting unnecessary negativity leak out all over the place. L had a very tough week organising a conference and came home in such high spirits because it went so well, it would have been so selfish to dampen her enthusiasm. I know, from past experience, that my mood can bring the whole family down, so, I am determined to prevent it. That's not to say I won't have a good moan once in a while.

As it is such a lovely sunny day I helped L chop some climbers down. L says I need all the vitamin D I can get. So, we had lunch outside too. Now I've been relaxing watching golf and writing here. I am hoping to have enough energy to go to the Writer's Group tonight.

Hep C Treament - Day 05

2008-09-19T03:41:00.000-07:00

Felt pretty good yesterday. Went shopping and survived. Though it was rather tough at the end. I got all flustered and confused at the till which was a little demeaning. You always feel so pressured to get your shopping packed and pay as quick as possible. I happened to have a new bank card - but not the new PIN, so my brain just became confused, I could not think what to do. I had plenty of other cards, but I just stood there. Eventually I gave one over and all was fine, but I hate the experience of trying to think and nothing will come. I have had it many times before, particularly when the Hep C was bad. At the moment I think the drugs are responsible. They rob you of energy.

We like to think we only have one brain but such experiences clearly indicate we have more than one. When you are ill your 'body brain' takes over. It insists on you resting because it knows its what the body requires. Even though your 'intellectual brain' protests, it has no power. If the 'body brain' says, stay in bed, you are a fool to ignore it. You see people who abuse the intelligence of the bodies. They push them to breaking point and wonder why they become seriously ill. One of the consequences of having Haemophilia, or any other chronic condition for that matter, is that you learn to listen to what your body is telling you.

That's why, today I am taking it easy. I feel rough. I don't know if its the second peak I hear mentioned in forums, but I am taking no risks. May go out for a cup of tea in the sun with a mate later. That's got to be enriching surely?

Just one other thing, I have had a couple of experiences of mild elation. Particularly this morning. I think I have been dreading this process for soooo long that now its here and I am not feeling too bad I become excited. The fact that I am at last trying to fight off this damn virus makes me feel empowered somehow. I was singing like a lunatic while washing up this morning. This is not the reaction I expected at all! : )

You live and learn.

Forethought Planning - Note 03

2008-09-17T12:05:00.000-07:00

Over the last few days I have had a number of ideas about, Forethought, circulating my addled brain and I thought it was high time I put them down.

I am still sticking with the idea of Prometheus being found. For some reason I see a small troop of soldiers finding him. The other thing I see is that Prometheus is huge. Not King Kong huge. More Mighty Joe Young. (Hey, I just realised KK is another great source of inspiration for this ting.) Whether he stays huge or does one of those godlike transformations into something more managible I have not made up my mind. When they find him, they have to fight off an attack from the eagle. Which would make a great start. When he and the soldiers return to 'civilisation' The authorities do not believe their reports about eagle attacks. Because there have been none since P was on the move. It is only when he is stationary in a hospital that the bird finally locates him and attacks once more. Chaos ensues. Of course everyone believes them now. 'What menace is this you've bought into the city,' they say. Or more probably, 'Get him the **** outta here?' They try to protect him from attack, but it does not work. The eagle always find a way - perhaps with the help of some other nasty creatures. And so the doctors decide on another method and give him a course of caustic drugs. They believe these will make him unpalatable to the eagle. Or possibly the drugs make the bird unable to scent and therefore locate him. Like interferon they of course will have a 50/50 chance of working. Because they a poisonous they make him feel wretched etc.

Eventually P recovers his original powers. Now there is the question of Pandora. I have a feeling she turns up at his bedside. Why? I do not know yet. What will their relationship be? There also needs to be a second, contemporary, woman who Prometheus can have a relationship with. Not a nurse - that's too obvious. Probably one of the soldiers who found him.

As to the bigger picture. Prometheus having forethought, knew he would be cured, and that Pandora would come to him. This was all his plan to get her aid to gather the ills of the world once more and return them to her "box". He also know in doing this Zeus would return him to the rock and its eagle. This he is willing to endure - for the sake of humanity.

These are my rough thoughts so far.

Hep C Treatment - Day 03

2008-09-17T03:44:00.000-07:00

Okay here's a quick list of symptoms for yesterday; sensitivity to light/sound, nausea, lethargy, clumsiness, poor concentration, headaches and shortness of breath. That's the bad news. The good news is that all of these a quite mild and come and go throughout the day.

As said in my comment in the previous post, I had spent the whole day beating myself up thinking I should get up and do something practical. It took ages to realise my primary job was helping the drugs do their work. I feel this is particularly true at the beginning. If I get the treatment off on a good course the rest will surely follow.

Today, I woke feeling pretty good. But have noticed I get tired quickly. Watching the closing of the para olympics was exhausting. Did anybody else think our contribution was rubbish?
Symptoms not so bad as yesterday which is good.

Just one further, blogging, observation, I can't get rid of a feeling of discomfort writing about myself like this. Every time I have to use "I" it makes me wince a little inside. I don't know if its a healthy humility or an inverted sense of ego. Anyway, it is as it is. The important thing is to record ruthlessly what is happening to me for the sake of the final book. I could have done this in a private note book of course, but I can see already the blog provides motivation, support and stimulating input so its certainly better.

Hep C Treatment - Day One

2008-09-15T12:19:00.000-07:00

Last night before bed I began getting a minor headache. I took the Interferon at 10.30pm. The needle didn't hurt at all. The most difficult thing was squeezing the dose in. I was trying to be gentle, as advised, but the pen needed real pressure. Still in six months time it will all be second nature I'm sure. L seemed more anxious about the whole process than me.

I then had some paracetamol and tried to sleep. This proved to be difficult. I felt speedy. I don't know if this was the tablets, the injection or just adrenalin. I will be interested to see how it goes next week. I tried very hard not to imagine symptoms. I also kept saying to myself - I can be well, I will be well, I am well. Like a mantra. If your head is going to go around and around you may as well fill it with positive thoughts.

And so to today. Actually it was not too bad. I got up and made breakfast and packed lunches for everyone. I felt achy, cold and a bit heavy headed but I could cope. After everyone had gone to work/school I slept. An hour later I was woken by a knocking on my first floor bedroom window - it was the window cleaner! Having slept I felt much better. The sun was shining, I wasn't dead, things were looking up. After paying the window cleaner I showered, dressed and did a little housework. I could feel ambitions of going for a walk or gardening. But was also conscious of not pushing myself too much first day. So, I rested. Listened to 'How to Kill A Mockingbird.' And a Sherlock Holmes adventure. Then after an afternoon nap made Diner.

The main symptoms are aching bones and waves of weariness. I am very happy about this. But I fear being too optimistic and thereby provoking fortune. In the past I have had experiences of thinking, hey I haven't had a bleed in ages, only to find myself with one the following day. Those Gods up there are listening, and they like their fun.

Thanks and comments

2008-09-15T11:59:00.000-07:00

Thanks to my visitors I hope it will continue to be worth visiting.

Chris, thanks for your wise words. I had never thought of that particular angle on haemophilia. The fact that someone has to suffer so others can benefit is certainly helpful. As you say we quietly suffer and rarely see the bigger picture. You allude to another aspect. I do believe the suffering we experience makes the struggle between life and death more visceral for us. The bigger questions in life are forced to be addressed. Taken the right way, this can develop a rare spiritual understanding. Whether this understanding has a wider influence on humanity, over and above the practical ones you mention, I don't know. But I like to think it does.

Forethought Planning - Note 02

2008-09-14T12:38:00.000-07:00

When I had the notion of using the tale of Prometheus as an interesting way of telling the process of Interferon treatment, I did not realise quite what I was taking on. After only a little research it is clear to me the myth around Prometheus is very profound indeed. Neil MacGregor, director of the British Museum, in a Guardian booklet about Greek Myths describes him thus.

"Prometheus's name is associated with the daily effort involved in being human. He is clearly a martyr in mankind's cause, and his bravely borne suffering wrings the heart."

It makes the challenge of writing, Forethought, all the more difficult, yet rewarding, perhaps. I would be interested in other people's opinions about Prometheus and what he represents.

Hep C Treatment - Day 0

2008-09-14T12:12:00.000-07:00

Finally, it arrives. I'm just glad to be here and to be able to get on with it without further delay. I want to knock this damn virus for six.

I had my first Ribavirin tablets at 7am and my second lot at 7pm and feel nothing untoward. I'll be jabbing myself just before going to sleep, as advised by my nurse. I'll tell you how things go in tomorrows blog. I intend to be kind to myself tomorrow. Take it easy. Watch a movie. Eat a few biscuits.

Hopefully I'll be up to doing some writing too. I really need to complete the edit of my first book - Deathless. So, I can send it out to more agents and begin the process of turning it into an audio book that I can podcast. I am also trying to finish the first draft of my new novel - Mr Reed.

All this and be the perfect House-Husband too! : )

Forethought Planning - Note 01

2008-09-11T12:19:00.001-07:00

Pandora, The Spites and Desperate Hope are clearly something that would be great to examine in the novel. How, I am not sure at this stage. At present all I have is a working title - Forethought - and a basic concept; which blithely ignores the fact Herakles is said to have finally rescued Prometheus. My idea is to examine what would happen if Prometheus were discovered, bound to his rock, by contemporary man. What would he experience as they worked to release him from the scourge that is damaging his liver and causing him so much suffering.

I think the idea has real potential. We have, the human (well demi-god) story of suffering, hope, success/failure, which we can all identify with. Then we have the thrill and spills of trying to combat liver pecking vultures which has got to be exciting. In film terms its, The Birds meets Jason & the Argonauts meets The Singing Detective meets A Matter of Life and Death. Perhaps you can think of others.

Anyway, the first thing to do is ponder on a general trajectory for the story arc, work out who are the core characters and flesh out personalities. I enjoy this part of writing.

Delusive Hope

2008-09-10T10:17:00.000-07:00

One of the biggest things to get a handle on in the face of any treatment like this, is Hope. Clearly, understandably, anyone going on such treatments will fear the suffering they must endure. But worse than this is the fear that, despite the hardship, the process will fail. Hope is what keeps you going. I know I must be positive. I know I must wish myself well. But I also know I need to be realistic. Need to accept it may fail. It is a very delicate balancing act.

As I expected when I began this project, I have discovered parallels in the Promethean story. In revenge for Prometheus taking fire to man, Zeus orders the making of the first woman - Pandora. As we all know it was she who opened the jar in which Prometheus had imprisoned all the Spites that might plague mankind. However, along with Old Age, Sickness, Vice etc, which we would expect, is Delusive Hope. It is her lies that discourages mankind from general suicide. It's quite a sobering story. Hope a Spite? Would we really resort to suicide if it were not for the urgings of Hope? Is there something illusory about it?

Perhaps, it is more helpful to think of being positive rather than hopeful. Being positive is more in the moment, being hopeful has a taste of grasping for a desired future about it. A wanting if you will. Positive thinking is essential for a better life. I know from experience that a negative view of life just attracts more negativity and suffering. In the past, when ever I have been down and blue I have just suffered more bleeds and more pain. It is so easy to dwell on the negative things especially when you are ill. But I just don't let myself go there anymore because I know it will only make things worse. It whispers self pity in my ear but I turn away.

Hep C Treatment: Day - minus 5

2008-09-10T09:46:00.000-07:00

Visited the hospital with my partner, L, to collect the interferon pens and ribavirin tablets. My nurse let me use a dummy pen to see how it all works. Even bought a "dummy tummy" home so I can practice injecting it. The pen seems very similar to one used by diabetics. I am used to giving myself injections so I was not too over awed, though I usually have to do it intravenously and this is only subcutaneous. That said, I'm not looking forward to it. I will still have to keep up my Factor 8 injections of course so I will have holes everywhere. I also have to take all these ribavirin tablets. I am crap at discipline so it will be a challenge to remember them every day.

Both L and I received a massage at the hospital - all very enlightened and certainly helpful. I was feeling rather anxious about things, but after the massage I felt so much calmer and prepared for what must be. L feels the whole process is like a factory. Getting patients through treatment. As the sole earner in the family she, understandably, is more concerned about the additional pressures it will have on her and our daughter, B. Me feeling shitty is one thing, their coping with me is another. Usually I am a pussycat of course. But who knows what kind of monster I will become. I can hear the menacing laughter as I write. broha, ha ha HA HA HA : )

In truth, no one can say how my body will react. It seems a lottery. Some really suffer, others sail through. So watch this space.

The Story So Far

2008-09-09T10:16:00.000-07:00

I received the Hep C virus through infected blood products. As a haemophiliac it was only a matter of time: most haemophiliacs suffered the same way. At least I was fortunate enough not to get HIV as well; unlike many. It was a terrible body blow for the haemophiliac community. As if life was not hard enough. Still these were the cards dealt and we have to live with them.

My doctors have been encouraging me to go on Interferon treatment for over twenty years. I have to admit to being very suspicious of the process. The statistics have always seemed dodgy to me. There are many types of Hep C virus and mine is the most difficult to quell. Until recently the stats just did not seem worth the risks to me. Now they say there is a 50/50 chance of success. Unfortunately I have been unable to get stats for the response of haemophiliacs specifically. I can't believe someone out there has not collated them.

Though I guess we are not so different from others I do suspect H's have been infected repeatedly due to the manufacturing of, Factor 8, the blood product that we all have to take to stop bleeding. In the bad old days, all of the blood from donors was mixed together to create the product. Clearly you only needed one bottle of bad blood to infect an entire batch which was given to thousands. Hence the widespread infection and probable reinfection.

An Introduction

2008-09-09T01:06:00.000-07:00

Here begins an experiment for me. An open window into having Interferon treatment for my Hep C, and using the experience in order to write a novel.

The effects of Interferon are unpleasant. And I wondered how I could use the experience for a positive outcome - even if the treatment proves unsuccessful.

I did not want to write a diary or bleak memoir of the experience. These things have been done before. So, I decided to utilise the experience for a novel. After much thought, the myth of Prometheus on the rock came to me.

The Hepatitis C virus attacks the liver causing scarring (cirrhosis) eventually leading to cancer. It has all the effects of being an alcoholic without any of the fun. The image of Prometheus having his liver pecked at every day seemed resonant with possibilities.

Prometheus is often translated as meaning "fore-thought" hence the blog name.
See http://en.wikipedia.org/wiki/Prometheus

I do hope any reader of this blog will find the record of my Hep. C treatment and the development of a novel interesting enough to contribute their thoughts and encouragement, because I have a feeling I will need them.