Tuesday, September 30, 2008

Missed Ribs

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.

Sunday, September 28, 2008

S p a c e d O u t

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....

Friday, September 26, 2008

The State of Humanity

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?

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.

Tuesday, September 23, 2008

Forethought Planning - Note 04

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

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.

Saturday, September 20, 2008

Hep C Treament - Day 06

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.

Friday, September 19, 2008

Hep C Treament - Day 05

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.

Wednesday, September 17, 2008

Forethought Planning - Note 03

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

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.

Monday, September 15, 2008

Hep C Treatment - Day One

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

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.

Sunday, September 14, 2008

Forethought Planning - Note 02

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

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! : )

Thursday, September 11, 2008

Forethought Planning - Note 01

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.

Wednesday, September 10, 2008

Delusive Hope

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

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.

Tuesday, September 9, 2008

The Story So Far

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

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.