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A Hepc blog, genotype 1, from discovery of virus, till (hopefully) the successful outcome. Also logging the mental, emotional and spiritual journey that this will entail. The entire contents of this blog are copyrighted by Paul Wilcox and Paul Wilcox reserves all rights granted by law to be associated with this blog.

Location: United Kingdom

Monday, February 28, 2005

Louis Pasteur Never Shook Hands


If you haven`t managed to see Martin Boltons site, try and get to it. It`s destined to become The British unofficial hepc website. Link on Ron Metcalfes site.

Something I think that is vital but I feel isn`t given the prominence it should, is the need to stay away from people with any infections. My wife, Sarah, understood more about this than I did because a friend of hers has just had cancer. While in hospital this woman was given inteferon, and visitors with any infections, colds etc were strictly forbidden.
We shouldn`t forget that we are on chemotherapy and that our immune systems are compromised.
I had to sign a waiver form before I started tx, which stated that I had read and understood all the side effects. One of these was :
"Any sign of infection see A&E doctor immediately"

My own doctor, who I was bringing up to date on my progress, had a look at the BNF website to check out symptoms of tx. Looking away from the screen he got me into an eyelock and with a great deal of earnestness said,
"Any sign of infection phone me straitaway or get to an A&E."
Yep, message received and understood!

So, when you consider the worst case scenario, which could be ending up in an oxygen tent on life support, you begin to take measures to ensure your protection.
I can safely leave all that to your commonsense - but it is a subject that is worth just sitting down with for a few moments and considering some strategies.


Saturday, February 26, 2005

Symptoms Part 2 The List

You know those daft martial arts movies where the lone hero sorts out 100 really mean looking guys armed with broken bottles and bicycle chains ?
You know of course that if they all attacked at once our hero would be completely overwhelmed and any hope of stopping the vice trade and the heroin smuggling being run by the vicious gang warlord would be lost and Asia and indeed the whole world would be doomed.

Well, fortunately side effects of tx are like the mean, nasty gang - they don`t all attack at once. Some of them don`t even attack at all.
That`s what you have to remember when you are under attack. It isn`t going to be a constant. It will pass.
Take my Riba incident the first day for example. My fear instantly was that everday was going to be like this. In fact, such was the shock of that initial incident, that I didn`t go out unaccompanied for ten days afterwards.

But subsequent incidents have been few and never as intense as that first time.
I developed a strategy for coping and fixed it in my mind so that no matter what I was doing I would drop everything and go straight into my contingency plan. The only other time I had a relatively serious Riba attack was in Church.
A few minor incidents had occured in the morning and frustration was building up. This was normal and normally it would be alright - but just as the minister was about to start his message I hit mega irritation.
One more moment in that building and I`d explode. I didn`t even consider that it would probably look a bit off just getting up and leaving - I just did it.
Once outside I felt better and once in my buggy and heading for the ranch, I felt a wave of relief.

You have to decide on a plan of action so that you can say "If and when this happens I will do that".
My nurse loves me because she asked me in the begining of tx to list my symptoms. I have a notebook for this purpose and hand it to her everytime I go in. Here is that list.
These are the side effects I have experienced since starting tx.

Racing brain, riba-rage, flu like symptoms, fatigue, waves of nausea, mouth ulcers, dry skin, extemely itchy skin, brain fog, confusion, depressive cloud, burning eyes, headache, insomnia, emotional and weepy, sweats, and probably a few others that I didn`t write down at the time and have forgotten about.
Very interesting I am sure you will agree.
There are ways and means of coping with all these symptoms. They can be handled because they don`t all come at once. The secret is to be prepared so that when they do come you will know what to do.
In my next post I will give some links (hopefully I will have found out how to do that by then) to the best sites with some tips on how to cope, as well as some of my own.

Fatigue is now my current symptom so my contingency plan tells me to stop what I am doing and go and lie down. Simple, isn`t it.


Symptoms Part 1: The First Day


Right. Now we are getting down to some serious stuff.
As far as I can see the most helpful thing when on tx is to be prepared for the various things that may crop up, and therefore have a strategy to cope with them when they do.
After all, our body is at war and all wars are won and lost because of either an effective or defective strategy. In another post I will cover preparation before starting tx, another vital area. After all, what idiot would go to war without being prepared.
Only The British going into Iraq!!
But let`s not get sidetracked into politics or anything else. Being focused before tx is essential and will pay massive benefits once you have begun treatment. Once you have taken your first shot of inteferon and your first dose of ribavirin it`s too late then to start wondering whether the side effects you are experiencing are part of the treatment or something else altogether. I was never a boy scout (far from it!) but their motto "Be Prepared", is a classic.
As you can see from my post, "Don`t mess with me I`m on ribavirin", side effects can assault you the very first day. I never actually finished off that day in my post. I`ll finish it now so you will see what I mean about being ready.

After I left the house that day I went for a walk in a pine forest we have nearby. I was so sensitive I could feel the groud under my walking boots as if I was walking barefoot. My whole nervous system was in an uproar and I was incredibly distressed. I was talking to myself out loud saying, "How can I spend a year like this". "Nothings worth this" etc.
I experienced total abject misery.
I ended up lying down under the trees, and prayed.
After awhile my head cleared and I saw the only two options available to me.
The first was to terminate tx immediately. That would stop all this and the idea was tempting. But because I had prepared well beforehand and had taken stock of my normal state i.e. without these chemicals, I knew that on a general day I felt like shit anyway.
I was already suffering brain fog ( to the extent I thought I might have alzheimers) . I was already getting fatigued so that I couldn`t run my business which I had to wind down.
I was only 49 but I felt like an old man.
No. There was no way I could go back to that. Besides, the virus was obviously becoming extremely virulent and the fact is without treatment I may only have another ten years - and miserable half lived years at that.
Excuse me, but there is absolutely no way I am going to live like that.

The other option was to continue tx hope for an early viral response and ride out the storm.
I think it`s important to have choices. It gives you the feeling that you have at least some measure of control and are not trapped in a corner by inescapeable circumstances.

Feeling a lot calmer I made my way home.
Getting into the house and plonking down into the chair I felt like I was coming down off a bad trip. In the seventies when the use of LSD was at it`s height those who used it said that the only good thing about a bad trip was when it wore off. Now, thankfully, mine was wearing off.
The only thing was it was 5p.m.
At 7p.m. I had to take the same thing and experience it all over again. Would I go through with it?

Because I had prepared myself beforehand, I did.


Thursday, February 24, 2005

Back To Not Normal

What a difference a day makes!!

Today I walked round to the library, less than 100 yards around the corner.
When I arrived I was covered in sweat and totally out of breath.
I stood at the counter just gasping and waiting for the various waves of feeling crap to subside.
Librarians live quiet, orderly lives and don`t like their days disturbed by people collapsing in their library.
The look of horror on her face as she asked, "Are you alright?" told me I wasn`t.

Still, after 5 minutes sit down I was reasonably recovered to do my business, and after another 10 minutes sit down I was able to wend my way home.

Needless to say I don`t get out much.
The trouble is I look so well. When I see friends I will make a huge effort to appear normal, have a chat and a laugh. But after an hour that is my limit, and what they don`t know is that I will go to bed for an hour after that and then do nothing for the rest of the day.

So you can see why Tuesday was so important.
I now tell myself that feeling bad is good because it means the treatment is working and the virus is getting it`s ass kicked. My body is working overtime at killing the virus and has no energy left for a life.
That`s O.K.

Sorry I haven`t managed to make links to your sites yet. Brain fog is keeping me from learning new things.


Wednesday, February 23, 2005

A Great Day.

This post is dedicated to Wendy Meister who begins treatment on Monday.
Welcome aboard Wendy. Your fellow hepc bloggers wish you a smooth journey.
I hope this post is an encouragement to you that you have made the right choice.

Tuesday evening is my injection time, so Tuesday itself is when there is least inteferon in my system.
And this Tuesday, the third on tx was a great day. A real turning point.
Today I had energy. Today the constant fatigue that has dogged me for months lifted somewhat.
Today I did jobs I had been putting off for weeks. Today I had a taste of what normal used to be like and what it could be like again.

All the shitty symptoms I have had (and will continue to have ) were because the treatment is working and fighting the virus. Today I felt quietly confident that I would be a responder to treatment.
I admit I wept - but this time for joy. Tx has an end and I can see that I will be better than I have been for years.
Yes, I know I have to "sit on this a bit", lest I get too confident, but it`s been a much needed boost and so early on.

The results of week 12 will come on my birthday, May 3rd. I will be 50!
It could be the best birthday present I have ever had!!

Thanks to you all for your support.

Sunday, February 20, 2005

Don`t Mess With Me - I`m On Ribavirin

When the Vikings used to invade the north of England for a bit of rape and pillage, they were reputed to take some kind of hallucinogenic beverage to psyche themselves up for the task.
Well, if only we could isolate that part of ribavirin that causes riba-rage we would have the perfect modern equivalent.
We could sell it to the goverment to give to our troops and within two years we would have the Empire back.
I have a little laboratory in my shed in the back garden and I am working on this project top priority.
Anyone wishing to get involved ( more funding is desperately needed) please get in touch.

Seriously though, riba-rage is awesome. Fortunately not many people get it on tx and even then not extreme.
I instinctively knew I would get it.
I read a book in the eighties on stress. I did their little questionnaire and discovered I was a type A personality.
It wasn`t long before I realised that this type A personality that they had discovered was merely a polite term for psychopath.
This is a condition I admit too, although not 100%.
The only 100% psychopath known to all of us is The Terminator.
Yes, and your boss is probably a very close second.
That`s why he IS the boss and you are not. Of course he could be she. Nowadays there are a lot of women psychopaths in the workplace. And they don`t all look like russian weight lifters either.

I got riba-rage the first day on tx.
I took the ribavirin at 8 a.m. My first dose was at 8p.m. the previous night.

After twenty minutes I felt like someone had just whacked me with a sledgehammer. I lay down till this was over and after half an hour got up feeling O.K.
Suddenly my brain was alive with loads of ideas of new projects I could begin. For an hour I planned out the next year and was excited at all the possibilities open to me.
All the while my mind is racing away my body is crying out for rest.

I saw in an instant what was happening and knew that this state of active mind in a fatigued body would lead to intense frustration and irritability.
Sure enough by the afternoon I was really hyper.
I went out for a walk feeling hostile.

Itchy Skin - Any Advice?

Just coming to the end of week 3, (is it only week 3, so many symptoms in so short a time).
I had been noticing my skin drying and becoming itchy very early on but last night in bed was torment.
All my skin over my entire body was itchy, even my scalp. There was no relief or let up.

I tried having a bath with oil in but that didn`t work either.
It isn`t dry skin that is the problem so it must be chemically induced (surprise, surprise)

In the end I took a couple of knockout drops I have for emergency purposes.
My nurse doesn`t like me using anything extra. Neither do I. There is enough chemical mayhem going on without adding more.

Advice from anyone who can help please.

Friday, February 18, 2005

More Introduction

I want to introduce you to the way this blog will be formed.

It is not going to be a daily diary of my life, fascinating though that would be.

But it isn`t just going to be stark facts about hepc, although you will get plenty of those.

I will be sharing my personal experience of the effects of treatment.
This is very important as everyone reacts differently and there will always be something to glean from any experience.

As it happens I am having, at times, what heppers call a rough ride.
I get riba-rage, an effect of ribavirin which causes you to become hyper irritable.
I can best describe it as Phil Mitchell on speed. Obviously there will be more on this in a future blog.

I am going to seperate these individual items out and devote seperate blogs to them as far as possible so that information will be more easily accessible.
Hopefully the blogs will be labelled clearly enough for you to access what you need.

I am only a fellow sufferer. I have no medical knowledge other than what I have picked up from the Daily Mail and the back pages of womens magazines.

Also on this blog from time to time there will be a record of my spiritual journey which has been impacted by hepc.
These entries will be made from a Christian view point.
As humour is utterly vital to surviving tx (tx means treatment by the way) I will be using it to provide what I hope to be some light relief along the way. Humour will come without any warning!!!.

That`s about it, see you on the next blog.

Wednesday, February 16, 2005

Hi, my name is Paul and I am Hepc positive

Welcome to my hepc blog - and congratulations because you are about to learn a lot about hepc in a short time.
Last April I didn`t even know hepc existed, now I have just begun tx for genotype 1.

It is amazing how self interest fuels desire for knowledge.
Without the knowledge I have gleaned from various sources, and I will be naming quite a few, I would have given up treatment on the first day!!!
Yes, when it comes to hepc knowledge really is power because it gives you informed choices and a certain amount of control.

The first thing you need to realise about being hepc+ is that it is a journey. You have discovered you have this virus, often called the silent killer, and suddenly you realise that life can never be the same again.
In future blogs I will take you through my experience of discovering I was hepc+, how I reacted, how family took the news and how eventually it has taken over my life.

I absolutely hate to mention Aids and hepc in the same blog never mind the same sentence because of the false connotation it may produce in the readers mind.
But the slogan for the Aids campaign "Don`t die of ignorance", could certainly be well applied to hepc.
Of course it IS a newly discovered virus, 1988 to be precise and so we have only been aware of it`s prescence for 17 years. It took the medical fraternity, (never let us accuse them of being hasty), 3 years before they began to screen blood products for the virus.
In the hospital where I am being treated, which is a major hospital for a large region, they have had only 7 people complete treatment so far.
Hepc is a steep learning curve for everyone involved!!
Sorry, feeling fatigued now, it`s 6 in the morning and I`ve been up since 4.30. Insomnia! Just one of the many interesting side effects of hepc tx we will be looking at in future blogs.