OVERCOMER

Trammy Dodger

2008-01-25T16:57:00.000Z

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I have come across many people who are finding Tramadol a very dodgy drug indeed. It definitely does not seem to mix well with combination therapy.
Some painkillers (Tramadol is a painkiller) can be used as recreational drugs. These are drugs that can be used to experience a high. If tramadol is used like this it can cause alarming effects. As little as 700mgs can cause severe fits. At low doses tramadol can cause huge mood swings. Some have described it as very “trippy” and have found that at night they can experience, “seeing pictures in their head”.
There have been many reports of suicidal thinking while on Tramadol.
The thing is, they don’t know what is in it or how it works.
Read that again!! They don’t know what is in it or how it works.
The makers are not saying anything – nothing at all.
The Mayo clinic says that Tramadol is a mix of three drugs.
1) A MAOI (antidepressant)
2) A weak opiod
3) An adrenergic (adrenaline booster)
If tramadol is mixed with another SSRI antidepressant the patient is likely to experience serotonin syndrome and be subject to anything from a severe case of the jitters to total fits.
The medical profession is finding that tramadol, far from being safe, is highly addictive – especially psychologically.
Withdrawl has to be taken very slowly and gradually, reducing the dose week by week.

TX May Fail You

2006-06-28T14:45:00.000+01:00

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Saw my nurse yesterday for the first time since January.
She was pleased with my bloods. Most of the readings are a little down since the last tests.
My Thyroid has returned to normal which just goes to show that nothing should be tinkered with until at least 6 months post treatment to allow things to settle down.
Stress levels are very high according to some extra hormone level tests which were taken especially.
This is no surprise when I look at everything that has happened.

My nurse asked how things were in general and I explained how that at first I had been in denial about failing treatment and was allowing everyone to be under the impression that everything was fine.
She was quite forceful and looked me right in the eyes when she said:
“You did not fail treatment Paul. Treatment failed you”.
A very important distinction that has caused a huge mental shift in my thinking and helped me to realise a lot of things.

I now see why a lot of people believed that I had failed treatment because I had done something wrong.
They believed that because they wanted to believe that.
Far better to believe that and give that as a reason for failure than face up to the fact that the treatment they are on may fail them as well.
It hit me like a revelation. People on TX or thinking of going on TX are of course terrified of treatment failing them so would prefer to believe anything other than the truth of facing the real odds.
The virus, treatment and a cure become the great obsession and anything not associated with it is filtered out.
They say obsession is better than genius because obsession will carry you through.
I remember building up my business from scratch. I was 35 and it nearly killed me. Cold calling to build up an area and getting my head around logistics and stock control.
I couldn’t do it now.
I didn’t have any genius, just an obsession to succeed and make some money.

I recall Carol Bolton’s words to me in August last year when she and Martin made a surprise visit.
It was a beautiful sunny day. They were fishing by the lake. I watched.
“If you’ve got hepc Martin has all the time in the world for you. If not he isn’t interested” said Carol.
She thought this attitude was a bit over the top but I could understand it perfectly.
Treatment is like a military campaign. You have to prepare for it well or you may lose the war.
The cruncher that is hard to take is that you can prepare and execute a great campaign but it can still fail you.
For those of you for whom the treatment will fail I hope you will be able to take this perspective.
There are some for whom the treatment will fail them.
It won’t work.
MK Andrews is a top class example of this.

It’s the reason I won’t do combination therapy again and am now waiting for the next wave of treatments.
The Combo treatment failed me once – it will not get a chance to do it again.

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Final Tests - Last Post

2006-06-23T20:41:00.000+01:00

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I go for my six month bloods check-up next Tuesday. It will be interesting to see how my thyroid has recovered and whether I will need to go on thyroxin to balance it.
There will be some minor interest in my liver function tests. Unless there is something dramatic going on nothing will be done at this stage.
In eighteen months I will go for another liver biopsy to see how things are progressing there. Again, unless there is major change for the worse no action will be taken.

So I feel that this blog is ready to be closed. It has pretty much come to the end of its life as a hepc blog and as a diary of combination therapy treatment.
It’s been a fascinating journey for me and I have learned so much.
To be really honest I was not happy with my life before I started treatment. This unhappiness was in fact one of the greatest motivators for doing the 48 week course. I knew it would be a life changing experience in itself and at the end the hope of a healthy new life.
Although the end was not what I had hoped for in that the treatment failed, yet in many other ways the journey through a year of combination therapy has exceeded all my expectations.
Just having a year out at the age of 50 was an amazing opportunity to reflect and examine my life. In Judaism, after every 49 years there was a jubilee year when all lands returned to their original owners and all slaves were set free.
Everyone had a year off to celebrate their freedom.
Even the land was left untilled to have a rest.
Although I certainly haven’t been resting I have been coming into new areas of freedom and change in my own life.

One of the main areas has been in the emotional arena. My panic reactions and my tendency to still lapse into times of bitterness and resentment have been of some concern to me.
Just before treatment I read a great life changing book.
It is called, “Total Forgiveness” by Dr. R. T. Kendall.
In the book Dr. Kendall calls forgiveness the greatest challenge to all of us and compares it to climbing Mount Everest. In the area of counselling and even in burnout these emotions can drain whatever energies are still left and are looked upon as excellent examples of the soul affecting the body in a negative way.
I worked through a lot of the stuff outlined in the book before treatment and was very pleased I did. The experience of TX really tested everything that I had learned in that particular classroom.
Nothing is real unless it stands the test of the crucible of real life.
In the past I have taken up many teachings from many sources and dropped them when they haven’t stood the test of the real world.
What’s the point of believing some wonderful sounding sentiments if in the end it doesn’t work and it is just so much high sounding philosophy?

I remember my Dad dropping Greek philosophers out of his life. He was very fond of quoting Demosthenes and the like and thought they were great. Then he discovered that all the Greek philosophers were homosexual and many of them had a young boy or series of boys.
Ancient paedophiles, in fact.
Kinda changes your perspective on all their high sounding stuff, don’t it?

For me discovering the ability to forgive has set me free from carrying around old burdens of self pity, bitterness and resentment. These old enemies – well, no, old friends really, came back to plague me many times during my lowest points during treatment.
My blogging career is not over. I am setting up a new one which will be loosely based on the book I am writing and will form a sort of pre advertisement of what the final work will be about. Keeping a blog on my progress is also a means of getting feedback from some friends I have made at the Dunamis conferences. I will feed this back into the book in order to make it as relevant as I can.
I have agreed to give a year to this project.

Thank you to all of you who have followed me during my roller coaster trip through combination therapy. I see from a counter that I had installed recently that I get 120 regular readers. One of the greatest surprises was receiving emails form “ordinary” people who didn’t have hepc but had happened on my blog and kept up with it.
I hope some of you will follow the new blog as well. More details will appear here when I set it up.
Thanks also to all of you who have made my treatment more difficult than it could have been. This includes friends and family. You have helped to test and refine my belief that total forgiveness is the only way forward to living free and maintaining a calm sprit amidst the storms of life.
Needless to say you are totally forgiven.

Thanks most of all to Almighty God, The Angel who has been with me throughout this hepc treatment journey and who will continue to be with me through the larger journey of life itself.
“For I know that my redeemer lives and that though this body of flesh be destroyed, yet in my spirit I shall see God”. Job 19:25

Relapses And Red Flags

2006-06-17T08:09:00.000+01:00

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I was sorry to hear that Martin Bolton had relapsed after doing 48 weeks of combo. The virus was detected at an 8 week post treatment test. The virus came back in spite of Martin being clear at 12 weeks and him being an expert on how to go through treatment, having done it twice before.
I thought of how he and his wife must feel.
So much effort for no result.
But at least, I thought, she will not have the incredible agony of having foul rumours spread about her husband that he failed treatment because he used alcohol and drugs throughout and that it therefore serves him right that he has failed. He deserves it.
Surely no one would be so vile as to suggest that.

But this is exactly what happened to me.
Not only that but I was also accused of being a Satanist, a trouble maker and various other slanderous lies.
As anyone can imagine, this was distressing to me at such a time of grief at having failed treatment and also being in incredible physical pain. What was worse was the damage these things did to my family who didn’t have a clue as to what was going on or why such venom should be directed at me.
Also, those that did know me and had followed me through treatment were silent.
No one supported me.
I believe even more so now than I ever did that evil multiplies when good men do nothing.
There were many betrayals including those from whom my wife had prayed with and been of help to.
The final betrayal was that my membership of a forum which I was a part of from the very beginning was deleted (as I have mentioned in a previous post)
No explanation for any of this behaviour was given.
People who I and my wife had helped now treated us with disdain and distrust.

It was a very evil and distressing time and I really took a long time coming to terms with it. I was very tempted to take matters into my own hands especially when some emails fell into my hands that would have justified my position and vindicated me.
I wrestled with using these for days.
I finally decided that I would leave it all in the hands of God.
After 32 years of being a Christian He has never failed me yet and I have certainly had times of persecution equalling this on other occasions.
“Vengeance is mine: I will repay”, says God.

I mention this as a warning to those who are seeking on line advice and support for Hepc.
The internet is a very dirty place.
So many people walking about, many with their Wellington boots on.
It is not home so don’t treat it as such.
It’s the real world and every bit as vicious and back biting.
I have seen people change on the internet. They assume a persona that is not theirs. Some extremely sad persons pretend to be other people.

So let the surfer beware. The red flag is always flying on the internet beach.
As the old maps had stamped on the edge of the page in the days when the earth was flat;
“Here be dragons”.

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Play Reaction And Other Media Stuff

2006-06-09T13:57:00.000+01:00

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I have had some reactions from friends and family regarding the play. All was very favourable although some confess to finding it hard to take at times.
Everyone said it was moving. Poignant was the word most frequently used.
I was amazed at how many asked what my reaction was?
How did the play affect me?
So I will make my comment here.

I thought it was excellent work by all concerned. I have been in a TV editing studio and I know how painstaking editing is for even just a short programme.
The blogs were very well put together and the superb soundtrack really set it off.
I felt it did give an insight into what it is like to have hepc and how treatment can affect you.

Sadly, for me, it set off a load of memories.
When Kim read out my lines about treatment failure I did shed a few tears – so did Sarah.
It just absolutely brought it all back.
I can see now why a lot of people move on and away from hepc and its associations very soon after TX.
I have attempted doing this myself but because I failed TX and still have the virus its taken me a lot longer.
It has now been seven months since stopping TX.

I have realised very recently that I have been in denial about my condition. This shows up when people ask how I am or what I am going to do.
I generally just say I’m fine. Many don’t even know I failed treatment and think everything is OK. I find letting them think this way easier than having to explain all the different scary scenarios that may be open to me.
To be really honest I can’t even be bothered thinking about it myself and so find it slightly irritating when others want to know:
“What are you going to do now?”
Because I really don’t know and frankly I don’t give a damn.

It may be that in ten years I will have end stage liver disease. But as the world is going to end in 12 years what does it matter?
Hee, hee. I do laugh at all the sudden media hysteria at global warming and fossil fuels running out.
And I really do laugh. I don’t look at such programmes.
I saw David Attenborough on TV news looking sullen and doom laden as he has finally come to the realisation that the end is nigh.
I shouted at the screen:
“Where’s your faith you smart arse git. Surely evolution is going to cook something up and save us”.
Maybe it is.
Maybe it is preparing a super virus to wipe all us humans out. We seem to be the ones that are causing all the problems.

So my battle against my illness fades into insignificance against the universal struggle we are all facing.
I love Arnies line in “Terminator 3”
“Judgement day is inevitable”.
Right on, Arnie. Bring it on, just bring it on.

Welcome BBC Pilgrims

2006-06-04T17:11:00.000+01:00

Hello and welcome if you have just come to this blog because you listened to the BBC play “Llama Lashes and Grumpy Old Gits”.
I haven’t heard the play as yet but I hope it was good.
If you haven’t used a blog before, new entries appear on top of older ones so to read it you have to go to the bottom of the page and scroll up, entry by entry.
If you want to read this blog from the beginning use this link:
http://paulwilcox.blogspot.com/2005_02_01_paulwilcox_archive.html
And go to the bottom of the page.

This blog comprises of over 60 entries as I made my way through combination therapy last year. Sadly, treatment failed. In my category, Genotype 1 you are only given 50% to 65% chance of succeeding – and even then the virus could always come back.
I know this a popular blog because of the amount of people who have read it and the emails I have received.
One of the emails was from Miles Keaton Andrews who is somewhat of a legend in treatment circles. He also, like me, is a non responder to treatment and has had more stabs at treatment - and more failures, than anyone on record.
He said my blog was “Well written, informative and above all, honest”.
Coming from an American where everything is bigger and better than anyone else’s I felt this was a real compliment.
You can find his blog on this link: http://mkandrew.com/

I have tries to make this blog as humorous and as interesting as I could while also giving out very useful information which would help anyone going through treatment.
I personally have opted to wait for some more gentler treatments which are on the way and hopefully will be available in 5 – 8 years time.

If you have hepc you have my sincere commiserations. It is a hidden and little understood virus and can be very life affecting indeed. It is staggering to me that an estimated 500,000 people in the UK today are walking about experiencing many symptoms of having the virus but are completely unaware that they have it.
Their symptoms are commonly put down to a variety of things.
For example, secret drinking.
The patient says, But doctor, I don’t drink.
The doctor says, “That isn’t what these liver results are telling me – you can’t fool me".
Yes, a whole host of other reasons are found and if all else fails you are just a hysterical neurotic – so stop imagining things and keep taking the valium.

Well, enjoy the blog. In the blogging community we found that humour is often the best weapon in our fight to beat the virus.

BBC Play And Helpful Pill

2006-05-28T16:48:00.000+01:00

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I have received the date for the radio play which incorporates a number of blogs to provide an overall view of the hepc experience.
Transmission (known as TX in broadcasting world!) is at 14.15 on Monday 5th June, until 15.00. It will also be available to hear on-line from the BBC Radio 4 site, for seven days after TX.
There will be a helpline available for those who want to know more.

I have been gradually moving away from people with the virus. Although I cannot escape the virus itself I feel it is important to distance yourself away from living in the virus as opposed to living with the virus.
The virus does not define me. It only limits me in certain ways. I have a healthy regime and as long as I stick to this it is the best I can do to give me as full a life as possible. The virus will try and destroy my liver. That is its reason for existence. My job is to limit its damage and scope for damage as much as I can.

There is lots of healthy eating and living advice around so I won’t give any here.
There is even a Hepc cookbook!!
Well, someone had to write one I suppose.

A pill that looks to be very helpful for those with hepc is Tramadol.
It is an opiate type painkiller but also has serotonin and adrenal boosting qualities.
This means that as well as taking care of the multitude of aches and pains often suffered, it can help with the depression and fatigue that is often reported.
I have noticed a lot of people with hepc are using it.
It may be for you, it may not.

Chronic Fatigue Syndrome

2006-05-18T12:52:00.000+01:00

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In a recent casual survey of people with hepc, chronic fatigue was noted in over 40% of cases.
Not surprising really when the body is coping with billions of particles of a virus which is intent on destroying your liver.
When I found myself suffering from chronic fatigue in 1989 I began looking into chronic fatigue syndrome (CFS) or M.E. as it is sometimes known.

The two best books on this subject are:
“Stressmanship” by Dr. Audrey Livingstone Booth.

“How to Avoid Burnout”, by the Minirth-Meir clinic.

Both are very easy to read and contain no scientific jargon.
Although these are fifteen years old nobody has come out with anything new that has added to them.
Apart from a scientific study that was carried out in the early nineties which investigated the use of cold baths as a cure for CFS. I hardly feel it is worth mentioning this as nobody is likely to actually do it as a cure, but they did find it helped in over 80% of cases.
Barry Sheen, the motor cyclist was one of the treatment candidates. He pronounced it as a cure for his CFS.
Now deceased, Brave Barry found the cold bath treatment more daunting than motor cycle racing.
The treatment consisted of sitting in a cold bath (not more than 16 degrees C.) for up to twenty minutes. Who dreamed this up and how on earth the idea even came to them is beyond me - but it worked. And under laboratory conditions.
One woman became so enthusiastic that as well as the bath in the morning she also took up to three cold showers during the day.
Desperate needs require desperate measures I suppose.

Far easier to take a pill. Sadly, there doesn’t appear to have been one until very recently.

More on this in the next post.

Birthday - 23 Weeks Post TX

2006-05-03T08:36:00.000+01:00

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Today is my birthday. I am 51. I am also 23 weeks post treatment.
And I feel terrific.
If my nurse lived in Salem she would be burned as a witch.
Everything she predicted would happen has happened.
I was warned clearly from the start that I would not really start feeling better until all the chemicals had left my body and my system had recovered.
She said it would take six months.
This has now happened in the last week or so.
I have even taken up swimming and those muscles which have not been used for so long are beginning to loosen and tone up.
The treatment has redistributed my weight and I look really good. My face is shining and my eyes sparkle.

Its unbelievable and I wouldn’t have believed it was going to be possible if I hadn’t been told and forewarned by my nurse.
The post treatment phase is the most difficult part of TX. You naturally expect to feel better straight away and the time in recovery seems to drag.
But it has an end.
I do think that it may take longer than this if you have abused or burned out your body previously. I do know some who are taking a very long time to recover but when I discover their past it invariably shows they had been burning the candle at both ends for many years prior to TX.
There are also the cases where someone has an underlying medical condition which necessitates them giving up the treatment at an early stage.
Thyroid problems are often the culprit.

The body can only take so much and if you borrow energy from your body stores today you will have to pay it back sometime.
Users of stimulants know this fact all too well.

Not only is my health surging back but exciting things have been happening on the work front.
Right out of the blue the BBC got in touch about ten days ago. They are going to do a Radio 4 drama about the hepc blogging community that formed in early 2005.
The original bloggers met up in London for a brainstorming session with the compiler of the blogs and it is set to be broadcast in a few weeks.
It will be on Radio 4 at two in the afternoon and is called,
“Llama lashes and grumpy old gits”.
I have read the script and it looks set to be a winner.
Truly a landmark for the hepc cause.

As a result of this I have been commissioned to write a book. This has never happened to me before and for a relative unknown (I did two years in journalism) it is unheard of.
All these things coming together has sent my spirits soaring and I feel like I am in a dream.
As one door opens another closes and one door was rudely slammed in my face last week.
A forum I was invited to participate in when it began last year has undergone a lot of controversy. A lot of this was entirely self made and could have been avoided but I have been lumped together with some outspoken people and banned.
Banned without so much as a by your leave, a thank you, or a gold watch.
It couldn’t have come at a better time and frees me from any responsibility I may have felt to help others on treatment.

This blog is enough. It stands as a landmark, a sign post to guide others on the journey. I know it has helped many because of the emails I have received (some from people without hepc) Somehow, now, the 38 weeks spent in virtual isolation, in misery a lot of the time, all seem worthwhile.

At the BBC meeting I met Jonathan Colam my first original hepc blog contact. He looked fantastic, almost like a film star. I make a point of saying this because Jonathan had the virus since he was 11 years old when he was injected with it by a doctor who was treating him for haemophilia. He cleared the virus last year at the age of 35.
Sadly, we did not have time to chat much but he said some very interesting things about his post TX experience that I hope to get his permission to share.
It is an unusual experience to meet someone you have only know through emails and phone calls.
There is a saying that being personally acquainted in the flesh with someone you have only known through their books or letters is often a letdown. This was not the case with Jonathan. I found Jonathan in the flesh far more interesting than having read his blog.
So, truly it is onwards and upwards. It has been a long winter and a late spring but I have a feeling it is going to burst into glorious summer.

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Poetry Therapy

2006-04-19T15:09:00.000+01:00

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I got up one morning recently and felt terrible. I was going round in a daze with negative thoughts when the idea came to write it down and get them out. I did and this poem is the result. I wrote it in just fifteen minutes – just pouring it out.
Afterwards when I read it through I laughed out loud.
Writing for me is great therapy for getting stuff out of my head. It stops the round and round thoughts that you feel you can’t escape from.
Far from ending up feeling maudlin and sorry for myself I felt elated.
I hope to discuss some ideas and strategies for getting through difficult times.
And they don’t have to be on treatment either.
We get them as a result of being alive on planet earth.

Awakened with the same muscle aches
The habitual reaching out for the pill of relief that will allow the slow getting into the day
Lying there wondering how long?
Going back in time to the beginning.

There was the shock discovery of an alien invasion
Probably been undercover for years
Tell tale symptoms of their existence that the establishment didn’t recognise or instead denied
Are they a virus as well?

The family after shock, the questions, the non answers, the waiting for the various steps.
Preparing for battle.
The final moment of marching into war the glorious prize of freedom and a new life gleaming ahead

The steady plod, plod through heavy days of combination drugs
Isolation of normal life – normal? What was that like anyway?
The endless internet searching for comfort
What about the itching, the sleeplessness, the sweats, the fog of confusion that descends, the rage, the depression.
Is this normal? Am I normal?

The friends found. Fellow sufferers invaded and violated by a detected and counted but unseen foe,
Unseen but felt, eating into our vital resources,
Slowing us down.
Amazing empathy. They know. They feel the same. We share our common humanity in a special way.

The results of warfare. The wins, the losses.
The victors. The failures.

Freed from the virus or stuck with it.
Moving on as best you can.
The losers awakening with the same muscle aches
The habitual reaching out for the pill of relief that will allow the slow getting into the day
Lying there wondering how long?

The Monthly script for pain from virus and interferon caused
The unbidden thought, why not just take them all?

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Moving On

2006-04-04T12:33:00.000+01:00

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Long time no post.
That is because I have been re - orientating my life and preparing for entry back into the mainstream.
Because I ran my own business which I shut down in order to do treatment I now have the opportunity to stand still and take stock of my life.
A very rare occurrence in any century but in the 21st, well, we don’t allow ourselves a moment to consider the treadmill that has been prepared for us or the chains that we have forged for ourselves.
“We bear the chains we forge in life”, said Bob Marley to Scrooge.
“Link by link we make them and add them to the chain”.

When Neo is set free from the matrix he returns after awhile. Released, and with his eyes open to the fact that it is all a computer generated illusion he is astonished to realise that all the places he went to (the restaurant where he ate – “Good noodles”) still seem so real yet in reality do not exist at all.
“Frightening isn’t it”, says Morpheus.

Damn right its frightening. Whereas I see the world as concrete and governed by all the laws that physics and the other sciences have discovered yet I realise that my mind is often tricked and deceived into believing things that are not true.
Propaganda is a word that is no longer used in the media.
Why is that?
Instead it is called Public Relations or Spin.
And the term Big Brother coined by Orwell as representing the head of a crushing totalitarian system has now been replaced – again by the media – by the term “Nanny State”, a much more comforting and soothing notion.
Mention Big Brother now and you immediately conjure up a picture of sad celebrities posing and posturing, pretending that they are on their own while actually being watched by millions of people.

And this is called reality TV!

Its a sad sick society but I wont get any points for saying that. We all know it.
What we don’t have a lot of is answers.
Thirty two years ago I met God. Over the years I have got to know Him quite well.
This last year or so I have had plenty of time to think. It has made me realise that the one and only overriding thought in my life is this.
That God exists.
That He is the source of all true knowledge.
That He can be known – in fact He has revealed himself to us.
The problem, as Morpheus states it to Neo, is that,
“Most of these people are not willing to be unplugged”.

We are living in a world where everyone is battling for control over everyone else. “They” want your attention, your money, your loyalty, perhaps even your soul if they could get it.
“They” are not giving you anything back. Its all one way and its all towards them.
They promise everything but give nothing.

There is an answer. There is one who can break those chains no matter how big they are or how many.
He can unplug you from the matrix of delusion, the world where you exist only as a source of energy for others, and set you free.

So that is my future direction. I am moving on from the past and going into the future.

The fact is I will always have hepc.
I will never be fully well.
I will get progressively worse (in my body)
But because of the God I met thirty two years ago those facts aren’t really relevant. I have a hope for the future that is not dependant on how my body functions or not. Not dependant on my income or financial or social status. Not even dependant on life or death.
He is eternal. Because He lives I can live to.

Please don’t think that I have “got religion”.
I always had it.
Don’t think that doing combination therapy has given me a revelation.
I began this blog stating that it would include the spiritual aspect to the journey through treatment. I have tried to keep that aspect to a minimum in order for the blog to be accessible to everyone. I think I have done that and the blog has proved popular with people from all walks and all faiths. I will still be mentioning Hepc and my recovery.
This is still first and foremost a hepc blog. But its obvious from the above that this blog will change content somewhat at times and sometimes will include more of the faith element.

At one time during treatment I thought of going back to journalism. I have rethought on that. Instead of reporting the bad news of the world I intend to go into full time telling the good news of hope in Jesus Christ.
This is not a soft option as in over 150 countries worldwide it is a crime to be a Christian and you can be beaten up, tortured and locked away.
Even killed.
I have met people to whom this has happened. They are amazing souls.

A lot of people have asked me how I have remained so positive with all the various things that have happened to me since beginning this blog.
This posting is the answer to that question.

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TX Aftershock

2006-01-17T20:19:00.000Z

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Just got back from a very enlightening visit to my nurse.
My hypoglycaemia which has been much worse post tx has not showed up on my fasting blood test.
All is normal including cholesterol which is a healthy 4.
So there is nothing visibly wrong apart from borderline hypo thyroid which my GP will monitor every two months.
But as I described my joint and muscle pains, fatigue and the constant need for sugar levels to be kept balanced she is not surprised.
Then the bombshell. That very morning my nurse had just had in one of her first treatment candidates who was celebrating her second year anniversary from clearing the virus. This person reported that they were only just starting to feel well now – two years after clearing the virus. Geno 1 by the way.
“We are still assessing the original completers of treatment and are discovering that the prolonged recovery rate is now the norm” said my nurse.
“You shouldn’t do yourself down just because you are not recovering like you think you should. Even those who clear the virus can often retain symptoms that they had pre treatment for many years after”.

Ten Weeks Post TX

2006-01-14T08:46:00.000Z

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Just about to come up to ten weeks detox period after being on 1,200 mg of Ribavirin and 180 micrograms of Interferon for 40 weeks.
So how do I feel and how long does it take to feel better?
For me, and remember everyone is different, the sweats and major flu like symptoms were all over by four weeks. After four weeks I began to feel human again and not have the miserable symptoms of flu. After having the equivalent of the flu for 40 weeks this is a tremendous relief. Shivers and feeling of being cold no matter how warm the ambient temperature is are all things of the past.
Around this time I remember vividly having a bath and feeling that warm glow afterwards that “normal” people get. It was almost a transcendent experience.
A small pleasure that we all take for granted but when denied for 40 weeks it begins to assume its true significance.
Lots of “small” things like that which have been denied due to the illness and the heavy medication come back. It made me ponder how much we take for granted.
Like eating food with a real appetite and not just forcing it down because you have to keep your strength up.
Speaking of “warm glows” the return of a healthy sex drive was something that was a double edged sword. I can always tell how healthy I am by how much I notice the opposite sex. Whenever I have been ill the most significant sign that I am recovered is that I start noticing and looking at women again.
Its irritating. I find this a nuisance and a distraction from the things I really want to get on with. I remember seeing a program where volunteers had a little number clicker which they clicked every time during one day when their thoughts turned to sex.
It was approaching the hundred mark for most people.
Its well known that the sex drive is linked into the creative drive. Is it any wonder in this sex obsessed society that true creativity is at a premium.
Nevertheless, I do find myself enjoying the return of this natural urge and am thankful for these little pleasures of life that still remain free and untaxed.

Mentally I am clearer headed than I have been for years. Its incredible. Whether this is a “rebound” effect of being foggy and having the mental equivalent of wading through treacle I cannot say. Nor can I say exactly when this happened.
Immediately after ending TX I went into another illness crisis with a trapped nerve in the groin. This required some heavy painkillers which of course obscured my detox recovery period.
All I can say is that at 3 months post tx I should be well on my way to “feeling normal”.
I say feeling normal because I still cant do normal things. Fatigue is still a problem and I hit major low energy spots. All I can do about this is rest until its over.
I am still very much in convalescence. But as my nurse told me to expect this before I even started treatment it is not much of a surprise.
Low blood sugar symptoms are a mega problem and I have had tests for this and am awaiting the results. I have to eat every two to three hours or I am in serious trouble.
Classic symptoms of hypoglycaemia, fatigue, confusion, weakness etc are a constant for me and I have to eat regularly to avoid them.
Bearing in mind that I did not clear the virus I can say that the life after TX is going to be better that the one before. But it takes time. In our instant culture that is the last thing most want to hear.

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TV On TX

2006-01-13T20:00:00.000Z

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If I could prescribe any painkiller or anaesthetic known to man to help people get through treatment it would be Television. There were days of unmitigated misery on treatment where nothing else could possible have helped or reached me and then I found TV miraculous.
I’m not joking. I could be locked up in my own world of bodily misery and feelings of utter mental blah where I didn’t dare contemplate the smallest thing and I would switch on the TV and it would all disappear. The world would be bearable. Pleasant even.
I would last as long as I could without the necessary calls for food and other natural functions and then rush back to bed or the sofa, pull up the quilt and escape into blissful oblivion.
As a result I have caught up on a lot of movies and even some TV series.

There have been various points in our marriage where we decided not to have TV.
The first five years we did not have one. Then another period of five years in our thirties and then another four years since 2000.
I know what life is like without telly and in fact had just had a stint without it and did not have one at beginning of treatment
My Ma thought it would be good for me to have one so she bought me a TV and video for my TX year. I never got hooked up too the mainline contenting myself to watch movies and TV series on video and DVD.
There were times when it was the only thing that kept me from giving up treatment.
Now that TX is over and I no longer need it I am weaning myself off.
I can now read again, something I found I could not do on tx. I am rediscovering using my own imagination to create scenes and not some producer.
The quality of films surprised me though and there are some very thoughtful movies around. Some martial arts films that are coming out of china are unbelievably spectacular and beautifully shot. Loads of money is being poured into the Chinese film industry and they cannot be dismissed as they once were.

Its no coincidence that I compare TV to drugs or anaesthetic.
In her book called “The Plug in Drug” Marie Winn sets out the results of ten years of studies of the effects of TV on children and the family. It was a damning book about the most powerful tool in the media arsenal, TV, and was completely ignored by every other branch of the media industry.
Dr Winn’s systematic collection of various studies of the effect of TV is horrific reading.
Did you know that they have actually paid communities to do without the TV for a year and monitored the results?
Those communities that took part in the study rarely went back to TV watching.
There is a scientifically measured TV trance that the mind goes into when watching the screen no matter what is on it.
Unlike other studies Dr Winn did not look at program content - what the quality of programs were. This study merely looked at the physiological consequences of THE ACT of watching TV.
That’s how I knew that when feeling at my lowest TV would give me the shot I needed to bear the pain of existence.

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Who Am I When I Am Not My Demons?

2006-01-05T10:09:00.000Z

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You see it in the media all the time. The following are actual headlines I have read over the years:
“The demons that drive David Jason”, actor who plays Del Boy in "Only Fools and Horses".
“It’s the demons inside that make me dance” Rudolph Nuryev, Russian ballet Dancer.
“George Best loses his battle against the demons”
“When I am playing I feel the demon force playing through me”. Alex Hurricane Higgins, World snooker champion.

We`ve all got them. So who am I when I am not my demons.
In the treadmill of life that society prepares for us its rare to get a space, some real time out to have a look at things and get a new perspective.
Serious illness is one of those times. It stops us dead in our tracks like no other thing.
Not only stopped but forced to face some unpleasant realities. Not only about illness but about how other people, friends and family react to our illness.
Shocks are inevitable. Previous accepted perceptions are challenged. Things may not be what they appeared.
And so we start to sort out and sift the wheat from the chaff, the false from the true, what is important from the trivial.

I am not going to name my demons here. But there have been plenty.
The last three years culminating in this last year of being ill and chemically incapacitated has forced me to face and banish them all.
Jonathan Colam was the first hepc blogger I came into contact with. He met face to face with his demons on TX. See it here at:
http://hepcfight.blogspot.com/2005/04/pack-up-your-demons.html

An old psychodrama trick is to look at yourself in the mirror and say what you see.
I now like what I see. There are good things, positive things there.
I hope after your TX experience you will be able to say the same about what you see.

And those that cant see the changes? Or won`t see them because they are viewing me through “time warp goggles” that see me as I used to be.
Well, may they too have the capacity to change so that they can catch up. Meanwhile they can be dead weight that must be jettisoned if I are to move on.

I am astounded as I read blogs and speak with others about their TX experience how many have made dramatic life changes in their relationships.
It is a real effect of the TX journey, and one of the most surprising.
Combination therapy has to be one of the most profound pharmacological experiences of our age.
I am glad I was there to experience it.

No Regrets

2005-12-22T18:44:00.000Z

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OK. So I chose to abort treatment after 40 weeks because of failing to achieve a negative viral response. Do I have any regrets?
No. None at all.
I don’t regret starting treatment because for me it was the right choice.
Given all the circumstances all over again I would do the same.
It was always a gamble. I was never offered more than a 50 – 65% chance of success.
My choice was based on my age, 50, the fact that I had probably had the virus for 30 years and the fact that I was getting symptoms that something was wrong in the liver department.
Also, I was in a position career wise to take a year out to do the course.
I made the right choice. It just didn’t work out.

I have already decided that I won’t do combination therapy again. Full stop.
Again, I have looked at all the facts, weighed them up and decided not to do another course.
I will wait till some new treatment comes along in about 5 – 8 years. New treatments are being tested all the time and they are looking at fewer side effects and shorter treatment times.
Even just 3 months for a Geno 1 is being touted as a real possibility.

Meanwhile I will live with the virus. This is something an estimated half a million people are doing anyway – most without knowing it.
After post treatment recovery (about 6 months minimum) I will get into some fitness stuff. I am already “Doing Herbs” which are a lot easier on the body than combo. Although they can never kill off the virus they can help the liver to cope with other toxins more efficiently and so give itself a chance to cope with the virus and perhaps limit its damage.

Treatment is not easy and 12 months is a long, long time if you happen to be one of those who get maximum sides.
No one has it easy. That’s impossible when you are injecting yourself with regular overdoses of interferon and taking tablets that fundamentally alter your bodies RNA.
There must be damage. That’s inevitable.
Towards the end of TX I felt my body being ravaged viciously by the chemicals.
It wasn’t nice. It was a violation.
I did it - we all do it – to achieve an end. In my case it didn’t work.
But I can never regret doing it. Not ever.

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First Wave Of Treatment Warriors

2005-12-16T19:29:00.000Z

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Have you all noticed that as the first wave of treatment enders is coming in since blogging and the forum started they are painting a different picture of end of term tx than what we previously may have thought.
And it is becoming obvious that most treatment centres consider you to be on your own once your last riba is down the hatch.
I am so grateful mine is not included in that list and that my nurse is still on my case.

Saw the surgeon today and had a check over for my groin pain which was previously diagnosed as a failed hernia repair.
He reckons it could be a growth or swelling caused by the IFN or a trapped nerve. He is checking me in for a day case on Wednesday to give me a shot of steroids to see if that will cure it.
If not he will have to stick a camera in and have a look around.
At least I can look forward to a pain free Christmas.
The steroids will give some temporary relief and I will be able to ease of the power meds. So some fast track work there all right.
He said: “The treatment you have been on is really weird stuff and could have exacerbated all this.”

Tell us all something new.

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Body Bags and Nice Guidelines

2005-12-13T10:03:00.000Z

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As I look around the HCV world which I no longer inhabit but visit from time to time I see some more casualties coming in.
People I have known on the journey and who are non responders like me and facing an uncertain future as their next course of action (or treatment).
A young woman has just recently had to give up at 6 months and is facing the devastating shock that this news brings.
I was intrigued to see that she has been offered maintenance therapy which is not included at all in the National Institute for Clinical Excellence (NICE) guidelines and officially is not available in this country.
Intrigued but not surprised because earlier in the day I had listened to a report on Radio 4 “You and Yours” about this very NOT very NICE business.
The program was showing how women who were waiting for IVF treatment were being treated differently across the country – some were not being offered treatment at a ll.
All this contrary to NICE guidelines.
The ministry for health pointed out what everyone knew anyway and were secretly practicing but were not owning up to.
Here is the ministry of health quote:
“NICE guidelines are only that, guidelines. The ministry of health has no authority to enforce them. All decisions regarding policy are made up by the Primary Care Trust of which there are about 302 in this country”.
So, the guidelines which are quoted when doctors and Primary Care Trusts do not want to do something are ignored when they do want to take a course of action.
In fact, the guidelines were made up and published just to fulfil a much needed role – that of keeping an army of civil servant employed making up meaningless rules that no one is going to follow and that no one can enforce anyway.

Isn`t that right.?
“Yes, Minister”.

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Carer Fatigue

2005-12-10T12:44:00.000Z

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In the real world where fewer and fewer people seem to be living these days the realities of life can be harsh. One of the realities of doing treatment (TX) is that it takes a toll on the carers, the partners and the family of the patient. Some marriages split up under the pressure of living with a suffering, moody and unpredictable individual. The wife/ husband, Mum/Dad can often change physically and mentally before the eyes of other family members.
That is not easy to cope with. The patient can become less competent, less tolerant then pressure mounts.
The home environment can become a pressure cooker from which there is no escape.
Marriages do split up during or after TX. There is suicide in the family, not just among patients who have reached the end of their limit.
Shocks build up over time and can overwhelm even the strongest of individuals. This needs to be faced.
My own nurse has had to face this. Two of her treatment patients have experienced failed marriages while on tx and blamed her for it.
That’s hard to take.
Its because of those marriage failures that she checks in on the family background before she offers tx. If a husband or wife never turn up for a session to support their spouse who is about to undergo treatment the chances are they wont get treatment.
We are not talking NHS guidelines here – we are talking reality, remember. The difference is often vast.

The severity of depression while on TX is seldom reported because of course there is a danger of treatment being stopped. Because of the “sue the bastards” mentality that is becoming prevalent over here every professional is covering their backs as far as possible.
No one is taking any chances.
However even though this is the case, there is still listed risk for suicide in the pharmaceutical literature.
This needs to be faced. A family who experiences this will be left to cope with the leftover guilt of: “Did we do enough”, etc.

Of course all this ends as soon an you complete treatment and you can return to normal life straightaway. After 48 weeks of injecting interferon and ingesting ribavirin and experiencing the never ending bewildering side effects they cause you can be safely assured that within 2 weeks you will return to normal.
That’s according to the Roche literature Pegassist Patient Support. In their booklet “Completing treatment what next”? They state,
“Once you stop taking the medication, it will take a few weeks to clear from the body. If you are still troubled by symptoms more than 2 weeks after treatment speak to your doctor about it”.
Wow, can’t you just smell the bullshit!!
We, the drug overlords are telling what will be. Don’t blame us if it isn’t true for you.
Why isn’t my Mummy or Daddy Husband/ wife getting better? They`ve taken their medicine. Whats wrong with them. The experts say they should be OK.
More pressure, more doubt just because corporations need to protect themselves against blame. Far better for misunderstandings to build up in the home and threaten family existence than for professionals to be bothered about it.
From the start my nurse told me it would take six months post treatment before I felt better.
An honest woman. A realist. An unusual person.
I like her.

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Changes

2005-11-29T22:40:00.000Z

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After treatment ends and you begin to detox from these heavy duty chemicals the real you begins to emerge again. But different. Even if you are not different the fact is you have been away for 24 or 48 weeks and are now back.
Have you ever moved house and left some stuff in boxes for months and then when you get round to opening them you find yourself saying,
“I forgot I had one of those” or “I thought I threw that out and here it is”?
Post tx is like that. For many anyway. Some people are determined to remain the same no matter what happens to them.
“This is the way I am. I was made this way and I aint going to change for nobody”.
I trust no one with that mentality is reading this blog. You wouldn’t have got this far if you were that narrow.
There is a danger in this re – entry state though in that you are very fluid in your thinking and could easily make some wrong choices. People on tx and post tx can be very vulnerable and feel exposed. For me this isn’t uncomfortable as what you see is what you get no matter what state I am in. To be transparent is one of my lifes goals.
For others though this process can be very uncomfortable, even unnerving.
But even for these I am certain they can find new things to enjoy about themselves.

One very personal thing I have discovered and embraced through tx is my Celtic heritage.
I am part Scots, part Welsh and 2 parts Northern England - a real Celtic mix.
But after moving to Wales in the `70`s and experiencing a less than warm welcome – even though they were burning holiday cottages at the time. So I rejected my roots in the land of my fathers and denied them.
On tx I was chatting on a forum to a guy from Glasgow who was going through some tough times and I said,
“Face this with the fierce courage and dignity which is the true heritage of every brave heart”.
Suddenly, instantly I was back in touch with that very part of my own nature that was my shared heritage with this man.
A hugely defining moment for me.
The Celts are a great people and I am indeed proud to be one.

The downside of changes is that others often cannot accept them or keep up with them.
This is especially true of family who don’t believe you can change or don’t want you to change. Its so much easier to have things as they were.
Adjustments are time consuming and require some thought and reorganisation.
“Why cant we go on like we were”. It was OK”.
Well it probably wasn’t OK but its easier than changing and aren’t we to old to change now?
Anyone that’s too old to change or experience new things is already dead.

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New Prognosis Pain And Pethidine

2005-11-27T10:13:00.000Z

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While I was away for the four days a new symptom developed. Severe pain in the groin. This is in the area where I had a hernia operation done 18 months ago. I had been diagnosed with hernia a year earlier, 2003, and had been struggling with it for a year before it was operated on. Not a massive pain more a dull ache after a days work.
It was through the routine blood tests for the hernia operation in April 2004 that I discovered I had hepc. In November 2004 I had a biopsy and was recommended for anti viral chemotherapy. Combo therapy, which I began in February 2005. This year.

So, this is where I came in exactly two and a half years ago. Still having hepc and again being on the waiting list for an operation which will leave me incapacitated for six weeks.
All this after enduring 10 months of a very harsh treatment regime which has failed and left me ravaged physically and emotionally.
Hard to bear? You bet!

Such was the severity of the pain in the middle of the night a week last Tuesday that Sarah called 999 and I was taken into A&E.
X rays showed nothing so I was given dihydrocodeine and sent home. My GP booked me in for ultrasound and upped me to pethidine as things were getting worse by the hour.
The ultrasound showed that the hernias operation had failed and that the plastic mesh used to repair the hernia was now out of place and moving around.
Despite the pain and the incapacity there doesn’t seem to be any way of getting around the queue I will inevitably be put in by an outsourcing agency.
Yep, that’s right. You no longer have access to the hospital or a consultant. You are in the first instance put into the hands of an agency that put you in the system. These people are pen pushers - or should I say terminal operatives - with no medical knowledge whatsoever.
The general public have effectively been removed one very large step away from first contact with the hospital itself.

Its impossible to describe the frustration, the anger, the helplessness I first felt when it hit me solidly in the face that I was now in a worse position than I was two and a half years ago.
Yet once more I found that leaning into the pain, letting all the emotions break over me and feeling them and letting them go has been the way thorough.
I have now, after ten days come to a place of acceptance. What is, IS.
And attitudes are more important than facts.

The future? Truly the undiscovered country.

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Post TX 2 - Getting Away

2005-11-14T04:38:00.000Z

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Whoever is in charge of ordering my life is doing a perfect job.
Sarah and I had booked 4 days away many months ago. As the time approached I wondered more and more whether I would be up to it. Just over 3 weeks ago, feeling very sick and weary, I was all set to cancel. Then, 2 weeks ago I experienced treatment failure.
So, here I was 2 weeks post TX with a pre planned ready made break.
It has been brilliant. Although still very much in post TX toxic withdrawal and experiencing many of the symptoms of being ON treatment I can certainly say I am no longer living INSIDE treatment.
Had I been inside treatment the time away would have been a living hell. The reason for this is because the time away was spent at a conference with about 70 people in attendance. Not only was there all these people but also the material we looked at during the time was related to emotional and spiritual counselling covering some very heavy subjects.
It was in fact, session number 5 of a series of 6 four day seminar weekends which I have been attending over the past two years. The previous ones have been so good I did not want to miss this one. Because I was post treatment I was able to go and had a great time meeting up with all the people I had met at previous venues and who I now knew as friends. And also, having a massive break from hepc and tx by focusing on something totally different.
Although generally I am still in poor shape I was able to handle this. Emotionally, I am often still a mess but as I was amongst friends who would not take advantage of my vulnerability, it didn’t matter. Very strong emotions and tears were very much on the agenda for many of the others attending the conference, so I fitted in OK.
Brilliant therapy and a real life saver.
I really do recommend getting away as soon as you feel up it post tx.
It doesn’t have to be far or cost a lot of money. The important thing is distancing yourself from the disease and everything related to it and becoming part of normal living again.
My break wasn’t entirely normal as it was quite intense emotional work at times but I was very pleased to note that, whereas inside tx I would have avoided all things to do with counselling, yet, just 2 weeks post tx I found myself very comfortable learning new skills, and being in counselling situations of one sort or another.

Definitely, as soon as you can post TX, make plans to get away. And leave the computer and all talk of illness behind.
I have come back and made some radical life changing decisions based on my own insights and the insights of 70 other highly trained individuals.
The conference and those who attended it reminded me of what a safe place really is.
I have been in the company of people dedicated to helping others escape from self abuse and the abuse that comes from others. I quite like it.
I will be avoiding all unsafe places in the future.

Eddie Stobart Spotting

2005-11-06T12:00:00.000Z

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In my work as a sales rep I travelled the highways of our glorious country every day. Britain’s roads are always a source of different emotional experiences and no two days are the same.
One day however I experienced a defining moment which will stay with me forever.
Like all amazing revelations it came in the middle of an ordinary day. I was travelling down a three lane dual carriageway when I came across a man seated on a light fold up picnic type chair in the middle of the central reservation. His chosen mode of transport, a bicycle, was leaning on the crash barrier. In his hands was a notepad and pen.
I wondered what this man was doing until I got up close and passed right by and saw a handmade sign that proudly declared:
Eddie Stobart Spotter.

A feeling of awe crept over me. How can such dedication and commitment be possible, I immediately thought to myself.
As if in answer to my unspoken thought, there came toward me on the other side of the dual carriageway an Eddie Stobart lorry. Its difficult to describe the vicarious thrill I felt on behalf of the dedicated Eddie Stobart spotter.
In just a few moments, the large imposing lorry that I was beholding myself would enter his view and consciousness. I felt the thrill he would feel as he noted down the details of the Eddie Stobart lorry (ESL). As everyone knows each ESL has a personal name.
I found myself sincerely hoping that this lorry was one he had not seen before and that a new name would be entered into his notepad. If this was the case then this mans day would not have been in vain and he could return home weary, but with a certain quiet elation and with daring tales of exploits to tell around the family dinner table.

I have to admit that I still cannot see an Eddie Stobart lorry without going back in my mind to that moment in time when I discovered such a pure identifying moment with someone of a different vehicular persuasion than myself.

Vulnerable

2005-11-04T00:14:00.000Z

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One of the most disconcerting sides of tx is the feeling of vulnerability you get.
It isn`t a constant but some days its like being on a mild acid trip. When I was heavily into eastern mysticism I read that hallucinogenic drugs shatter the protective aura that surrounds the body. I absolutely believe this to be true. It has nothing to do with occult belief – it is merely a fact., and one that has been measured scientifically.
I think this happens on treatment and accounts for a lot of the odd mental effects.
It is this feeling of vulnerability that makes you reclusive and reluctant to venture out.
I still remember the feeling of relief I would get as I was nearing home and safety after a foray out to the shops or library or some other dangerous place.
As an early experimenter of hallucinogenics I came to know and handle the effects of the trip. Likewise on tx, after awhile you get to know the cycle of these odd effects. Some days I would wake up and know that I would not be going out that day, no matter what.

I just didn`t feel safe. This vulnerability has been one of the first things to go on detox.
I am now fully back, fully in control and would feel utterly secure in most urban situations.
If that isn`t weird tell me what is?

Looking at the brief I gave myself to fulfil in the beginning of this blog I said I would note the spiritual effects of the journey. This would be from my current position as a Christian. Although my background is eastern mysticism, divination and sorcery I left all these behind when I converted to Christianity.
For someone living in the spiritual realm treatment has particular pitfalls.
Irritatingly, like everything else on tx no one seems to experience the same effects.
But the most common reported symptoms are lack of joy, feelings of isolation from God, a sense of being in a wilderness. The sense of abandonment can be acute and a great trial. In the midst occasional glimpses of light in the dark. I personally have experienced some incredibly dark times. Like most of us I have known dark nights of the soul. I did have a couple of months of this early on in tx.
It greatly improved after the reduction in ribavirin at 24 weeks. Someone on 800 mgs of riba and geno 2 or 3 may hardly get any of these effects. Once you are up to 1000mg and over odd things do tend to happen.
After 6 weeks of tx I didn`t bother having a standard meditation or quiet time in the morning. I have been flying by the seat of my pants ever since. It has been both frightening and exhilarating.
Coming out of the tx experience I find my faith is stronger and my relationship with God deepened. Knowing I can be totally and utterly honest and myself before someone who knows all about me has been a comfort.
But not an always felt comfort.
If I was looking for constant comfort which was under my control, give me heroin every time. But that’s just a crutch, a soother, an anaesthetic.
For real on the edge living give me life in Christ.

Post Tx Report 1

2005-11-01T10:52:00.000Z

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Whenever you are reading anyone’s story to gain some insights for yourself it is always useful to bear in mind their circumstances. Often whether treatment (TX) is hard or less hard (its never easy) can depend on an individuals circumstances. Someone who has few financial worries and can afford a cleaner to tidy up after them is going to have an easier time than someone living on a council estate on benefits.
Someone who has had a successful TX and cleared the virus may well have a different reaction post TX than someone who has had a failed TX and had to abort treatment.

For me, the first four days of coming to terms with ending TX were intensely emotional. Lots of grief, body racking sobs and despair. But also loads of relief and a feeling of thank god that’s over. Moments of great calm and peace, of feeling I had done the right thing. Other very dark moments wondering whether I had wasted all my time. Thoughts that I may have done some lasting damage to my body by continuing using such powerful chemicals for such a long time kept popping up to the surface to disturb me.

Throughout all this an almost unbelievable weariness. At times I wondered whether I actually had enough energy left to continue life support. It would not have surprised me if I just dropped down dead of sheer exhaustion.
I got by on pure carrot and stick and raw emotion.
The female type hormones which are in the ascendancy while on TX are now receding and being replaced by testosterone. I know this by the simple fact that early morning erections which had become a thing of the past have now returned. Also an aggression and a bloody mindedness which while I didn’t think I missed during tx I am very glad to have back.
The hunter, gatherer, warrior and protector of the family unit is returning.
I have had some massive surges of anger at some of the stuff that has been my lot on Tx.
Hassles from Govt departments, banks and corporations have been bad enough. But a general lack of understanding and help in the community at large did make me very angry.
The anger seems to be receding a little and I am merely left with a disturbing unease at the way in which our society has gone.
Care in the community?? Fuck off, Tony, it doesn`t exist.

I am hoping that when the warrior truly returns he will need no care at all – from anyone - ever. But I also sincerely pray he will remember this experience of being (often) alone and defenceless and will be more willing to help others when he happens upon them.

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The Oncoming Train

2005-10-29T16:56:00.000+01:00

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Hey, you know that light at the end of the tunnel? It really was the headlight of an oncoming train. I had a PCR test at 36 weeks. This is a test for the presence of the virus. This wasn’t necessary and is not usual protocols. But I wanted one to encourage me that all was well. I fully expected it to come back negative for the presence of the virus.
It didn’t. Virus still detectable. At this late stage a result like this is really the kiss of death to any further continuance of this course of treatment.
Over a very emotional weekend with lots of phone calls and emails seeking advice I finally went to see my nurse to talk it over with her. I have known her now for 15 months and we have been through some intense times together. I put a lot of faith and trust in her judgement.
I know she wants the best for me. In a specialist/patient relationship you cannot really ask for more. This alongside advice from treatment veterans helped me to come to a conclusion on the matter. Although Martin and others would have liked me to wait for the results of a viral load test outstanding I have nevertheless decided to discontinue treatment in favour of a new treatment in the future.
I have already been offered Schering Plough which is a different type of interferon and I am on a list of “guinea pigs” for future polymerase inhibitor treatments. For the moment though I have to rest, clear my system of this current treatment and give my body a break of a couple of years before it is ready for another battle.
I certainly am in need of some Rest and Recuperation (R&R) Body, mind and spirit have been on the front line for an extended period and need a break. Hoping to get away for a 4 day break very soon.
I still have a lot to say about treatment and getting through it. Also, now I will be reporting on post treatment recovery.

Have had mountains of well wishes and encouragement from fellow travelers and also from veterans who have journeyed before.
I am grateful to you all.

Welcome To New Readers

2005-10-19T22:18:00.000+01:00

Hi, my name is Paul and I am in week 37 of 48 weeks of combination therapy. Welcome to those of you I have just met.
I hope you find this online diary useful. I have tried to give an honest account of the journey through combo therapy.

Blogs are read from bottom to top with the latest entry appearing at the top.
To view this blog from the beginning use the archives on the left beginning at February.
To get list of Blogs by others on combo use this link:
http://www.theboltons.plus.com/Blogs.html

The treatment journey is a fascinating one and everyone has their own story.

The Light At The End Of The Tunnel

2005-10-14T08:45:00.000+01:00

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The light at the end of the tunnel is a sign of an oncoming train. That’s supposed to be a joke but on Tx you can never tell. I do feel confident, less stressed, less mad and looking forward to a successful and fruitful life after treatment ends.
The reduction in the ribavirin is largely responsible for this.
However, having reduced the ribavirin I am able to separate out the effects of the combo. Combination therapy is called that because it is a combination of two drugs which work together to produce the desired effect. In this case it is interferon and ribavirin.
Interferon on its own is ineffective (10% success rate, I think)
Ribavirin on its own is useless and won`t be of any help.
In combination however the rate of success rises dramatically to 65+% in Geno 1 and 80+% in Geno 2 and 3.

I blamed everything on the ribavirin because it is so powerful a rush. Within 20 minutes my heart rate rises dramatically while a small cosh is applied to the back of my head.
Let me tell you how powerful it is. Before my reduction on riba my resting heart rate was 86. One little pink pill, 200mg less, and it is down to 72. Before tx it was 65 – 70.
So ribavirin does tend to get the blame for everything but the interferon is a real body ravager.
After 38 weeks of injecting that stuff I feel my body getting tired and worn out. I`m aware that I could get infections very easily and now that winter is approaching I find myself being more cautious. If you read my post “Louis Pasteur never shook hands”, http://paulwilcox.blogspot.com/2005/02/louis-pasteur-never-shook-hands.html I outline the dangers of infection. I have in fact trained myself never to shake hands and avoid rubbing my face and eyes and picking my nose. Of course, I never picked my nose anyway, having been brought up in the North of England where gentility is instilled at birth.
Interferon is subtle. You don`t think it is doing much but it is responsible for all the aches and pains, flu like symptoms and all the malaise that goes with that. Most powerful of all is the effect it has on your bloods and the ability to carry oxygen around the body. A flight of stairs can leave you totally whacked and panting painfully for breath. 5 minutes later you are back to normal.
You adjust of course and live life at a slower pace. I have seen 80 year olds fitter than me as I am at the moment.
But I am only 50 and when this is all over I will feel a very healthy 50.
Not straight away though. I was reading the blog of a friend who has just finished 48 weeks of treatment. Finishing treatment is in itself an achievement but he has also been tremendously active in helping others through treatment and promoting awareness.
I notice he wrote this on his blog recently:

“Today I am realising I must have had some notion in the back of my mind that once I stopped taking the medications I would feel better quickly, perhaps even instantly. I say that because my head knows this won’t be the case, but I do feel distinctly disappointed to feel much the same 48 hours later without medication as I did before”.
http://www.ronmetcalfe.com/blog/ Wednseday 12 October.

I have this same notion. And it is dangerous. All evidence to the contrary I somehow believe I will be different from everybody else and will instantly recover and be 21 years old again. Well, I will never be 21 again. So thinking like that can only lead to disillusion. It is the same thinking I had pre treatment. While preparing for the worst I secretly thought I would be one of the ones who had an easy time and would breeze through treatment. Needless to say I was totally wrong. We seem to live most of our lives in some sort of self delusion other. It keeps us going. Some people like to call it being hopeful. But what basis is there for this hope? Why should life go easier for me than anyone else.
Its interesting. When I was kid I looked upon my grandparents as fusspots because they were always saying be careful and warning you of danger. They saw the world as a place full of hidden dangers and pitfalls. To me as a child I saw it as a safe place full of fun. This led me to playing on the sea cliffs near my home and nearly falling hundreds of feet to certain death on a number of occasions.

My body has been put under stress and will need to recover. Those extra heartbeats, 840 an hour, 20,000 a day have taken a toll. Whilst living as a geriatric my body has been working overtime.
Light at the end of the tunnel? Yes, but still a way to go yet.

Doing Good

2005-09-28T13:38:00.000+01:00

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Another injection of apathy done. 35 down, 13 to go. Yes, I have done well. I am proud of myself. It has been and is a supreme achievement. Like most of us I have had some battering from life. These can leave you feeling defensive or aggressive depending on your temperament. I`ve been both of course. Why have one fault when you can have a whole bagful.
But despite still feeling crappy from the symptoms there is a new me coming out. More quietly confident and at peace. I like the new me.

Whenever I describe a side effect of treatment I find myself saying
“One of the worst sides is…. But when it comes to apathy it really is true. Being slightly anal and obsessive before treatment and having a thing about order and control in my life the apathy was hard to take. And yet strangely enjoyable and freeing.
Being able to let things just slide and overcoming the tendency to obsess about it has been very releasing.
Right now, for example I have a 6 week backlog of mail piled up. In fact, the gas people phoned last week saying unless I paid my bill I would be cut off. I paid up straightaway.
Money wasn’t the problem. Apathy was.
I sifted through the mail and found the bill and the reminders. I just laughed.
Unless you knew me before you wouldn`t know what a huge change that is.
I am not going back to the old me.
I am also very positive about the outcome of the treatment.
At 24 weeks I felt very negative and thought the results would show treatment to be a dismal failure. I was wrong of course so I don`t listen to the demon doubters anymore.
I try not to be over confident either. I suppose balance is what I am looking for.

The world of sport offers a lot of helpful tips in these areas of being psychically tuned up.
Duncan Goodhew once said that he used to get disappointed when he lost and elated when he won. He found this was disorientating and detrimental to his over all performance. So he learned to “level out the roller coaster” and treat triumph and disaster just the same.
Rudyard Kipling was right. They are two impostors.
One of my favourite characters at Wimbledon is John McEnroe and his commentary. He is so sussed out. The superbrat grew up.

The reduction in Ribavirin was a smart move. I feel a lot different mentally and do not get such massive emotional surges as I did. It has probably meant the difference between being able to tolerate another 4 months of treatment or not.

Here And Now

2005-09-18T15:19:00.000+01:00

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A difficult day today. Morose and depressed. Had a couple of personal shocks lately, including bereavement. Family stuff.
But I have discovered that expressing myself on my blog, the forum or even email communication is a great way to just get through. Focusing on someone else is really the best way to forget yourself. Maybe that is why being in love is such a great ecstatic experience. One minute you are the centre of the universe, the next a god or goddess enters your life and nothing is the same again.
I like what G.K. Chesterton (journalist and novelist) wrote,
“When a man knocks at the door of a brothel, he is looking for God.”

I have had to replace my hard drive and been off line for about two weeks. Its interesting to have a break from the same thing and come back and view it with fresh eyes.
The treatment experience is often best viewed looking back. I think its important to write spontaneously and grasp the full flavour of the moment, but for real understanding hindsight has 20/20 vision.
As soon as my week 24 results came in I was surprised to see that I automatically began counting down to the end of treatment instead of counting weeks into treatment. A subtle change and incredibly helpful. To know the biggest part of the journey has been accomplished and there is now only 16 weeks left makes it a bit easier mentally.
Also I have asked for and obtained a reduction in my ribavirin from 1200 to 1000 mg a day. I already feel a benefit in that the mental effects of tx are less. I will talk more on this when my body settles down to the new dose and I can see the true effects.

Although I have done 33 weeks of treatment I am reminded this week that I cannot get complacent. Buzz Trexler, (Ripshin) a journalist and pastor from USA who I have met through the hepc blogging community has just had to cease treatment at 36 weeks. This is due to some illnesses that have been caused by a compromised immune system.
Not only does he have to cope with terminating tx prematurely, but he still has the painful illness left to combat.
Buzz, you always sign off wishing others Grace and Peace. May you know that for yourself through this time.
The chances are very high that Buzz has done enough at 36 weeks to have cleared the virus and to remain clear for good.
Just when you thought you had all the pieces of the jigsaw in place suddenly some of them seem to jump off the board.

Update - And More To Come

2005-09-04T10:43:00.000+01:00

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There is a follow up to that last post but the dust still has not settled enough for me to get my head around it. So I shall blog on and come back to it later. I always intended to come back to my blog and have a lot of topics percolating so be prepared for a flurry of posting soon.
I have been encouraged by a few to continue to blog. Carol Bolton recently emailed me:
“We are fed up with seeing bitterness. When you are going to start blogging again?”
So here it is. I am going to concentrate a bit more on my blog than spend time on forums because I feel the blog is a more permanent statement. It is, after all, one person’s entire treatment experience. Very rare. Although not as rare as it was.

Those of you in the hepc community who frequent forums know that I am doing OK. For the rest let me bring you up to date and apologise for not doing sooner.
Waiting for my week 24 results promoted another chaotic crisis of emotions for me. There was so much going on and I became very run down and broke out in 3 separate rashes. A herpes shingle type right on my forehead, broken and cracked sores on my lips and inside of mouth and a magnificent red irritating rash right inside my bum cheeks.
These required Aciclovir cream, Daktarin oral gel and canesten respectively. They cleared up OK but took a lot longer than normal due to the compromised immune system. About 10 days in all.
Very distressing to feel your body breaking down and psychologically extremely difficult when you realise you are doing it to yourself and could stop it if you wished.
Also, a couple of riba rage incidents that distressed me.
More very serious thoughts of giving up had to be wrestled with.
A few of you know how serious it got. A special thanks to you for your support. Invaluable.

But the week 24 results came through and I had a viral load of <600. This means there is less than 600 particles of the virus in one millilitre of blood. As I started with over 500,000 this is quite a feat. It made me think of all those dead particles of virus that had to be cleared from the body. If some mathematician can be bothered to work it out, please let me know how many it is.
It made me realise how my liver is working overtime, all the time. No wonder I feel tired and am content to sit and let everything drift past me.

Treatment, for me, is a surreal experience and does have moments of amazingly enhanced consciousness where I suddenly see things in a new light. These could be delusions of course. I certainly have had a few of them. And paranoia and obsessional thinking. But although all of these are very real at the time, once they pass you look back and wonder what the hell you were so worked up about.
The smallest incident can assume gigantic proportions and seems vital to the continuation of the universe as we know it. Afterwards you wonder what you were bothered about.

As I look around and have the experience of many hundreds of others on treatment and post treatment I can see that my reaction has been extreme and I put myself in the 10 – 15% category who have a really hard time on treatment. I am convinced this is due to the high dose of ribavirin I am on (the legal limit) and my natural sensitivity to stimulating substances. For example I can`t tolerate caffeine very well and two cups of coffee in a day would have me on the ceiling zinging away.
As the main work of ribavirin is done in the first 6 – 8 weeks I am going to enquire whether I can drop the dose from 1,200 to 1,000mg. I think this would give me an easier ride.
This blog has been of immense help to me. One riba induced night of insomnia, at 3am in the morning I was having serious thoughts of giving up. I read my own blog from start to finish. I was only half way through when I was convinced by my own arguments and reasoning that I was doing the right thing. It was a strange experience to be encouraged to continue a tough regime by something you had written months ago.

When you are in the light, in a good place, its there you have to make your life decisions to keep you when you enter the dark place.
There is always some storm or other on its way to test what we really are and what we really believe.

Through this illness I have met people online from all over the world. We have become cyber buddies. Sharron, in Baton Rouge, Louisiana, you are very much in my thoughts and prayers.

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Bitterness

2005-07-03T14:32:00.000+01:00

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I seem to be be fighting a losing battle with bitterness. As much as I know how great and powerful an enemy this is, ranking alongside self-pity as the greatest destroyer of inner peace yet I find myself giving in to it.
The more I look into the virus and its effects the more I see that it has been with me since I was 20 years old and has affected my entire adult life.
Symptoms of fatigue, low blood sugar etc have dogged me for 28 years .
And now the culmination of all this is a year of hell and misery.

What the fuck is it all about!
As strong as my beliefs are some days I want (and do) tell God just to fuck off.

Why? Why all this misery inflicted upon us all.
I gave up on pat answers long ago. Those smug Christians who know all the answers don`t get much room in my life.
Why are we given so much crap. And why do some seem immune. Fat cats with their bowl of cream which they stole from the poor. What happens to them?
Do they burn in hellfire? And if so what good does that do me?

Not only are you ill but you often get stigmatised by an ignorant public, deliberately kept in ignorance by authorities who you are paying to protect you.
Why do you have to fight for anything decent whereas evil comes naturally?

Answers on a postcard please.

Answering The Demon Nadgers

2005-07-03T09:33:00.000+01:00

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Hello Blog! Hello visitors. I haven`t posted for awhile because I haven`t wanted to go on about my misery. There is no point is there? Some say a trouble shared is a trouble halved but I say a trouble shared is a trouble doubled. But it has been a very tough time and some days I have cried from sheer misery.
But not today! Today I feel clear headed. Today I can see what needs to be done and actually do it. Today for a brief spell I saw what I would be like without these heavy chemicals floating around my system and the possibility of being virus free.
It’s a long time since I felt like this. Not since February 23 rd in fact when I last blogged about a great day.
Frightening? No. Comforting. Because it means all this has an end. Not many get as many difficult side effects as I do but for those who do it does end.
I know this is just a brief respite and could change in a minute but it is a much needed oasis in the desert. There are days of remission on treatment when things are almost normal. There are days when they are better than the normal you were used to.
Soon, one way or another it will be over. Then all this will be in the past.

But on that day and on the successive days that I do feel normal there is a danger that I will forget what I have been like. Because I haven’t blogged about my misery overmuch, when I come to look back on my experience and use this weblog I will wonder why I didn`t do certain things to help myself.
Like some well meaning people now who say, “Why don`t you….(insert suggestion) when they don`t know what they are dealing with or what they are talking about.
I know myself too well – and I know the demon nadgers. When all this is a dim memory I will look back and a little voice will say,
“Why didn`t you read more?
“You should have gone out for more walks instead of spending so much time in the house.
“You could at least have sorted out your life a bit better
“Why didn`t you get out and see more people or invite them round
Why? Well, smart arse nadger I will tell you why.
I didn`t read cause I was so brain fogged my attention span was that of an earthworm. I kept drifting off and found it frustrating.
Go out for walks!! Somedays it was all I could do to get out of bed and shuffle around. Walking isn`t much fun when waves of nausea are rolling over you. Any way there was no point. The world of nature looked utterly dull and grey and lifeless. Remember?
Sort out my life!! That`s a good one. I did sort it out totally pre-treatment, but that wasn`t enough. No, the bastards still come and attack you when you are down – just like you are doing now, demon nadger.
In fact demon nadger I am ending this conversation right now because I know there is no point talking to you. I know you of old. You aren`t interested in my welfare, you just want to bring me down.
I done good. I always did. I did the best I could under the circumstances. I played the hand life dealt me, and I played it well.
I am free of you demon nadger. All those tapes you play to me are lies and distortions. The one great thing about treatment was that I saw you nadger for who you are. You told me I had to be in control, that nobody else could do it as well as me. You told me that weakness was powerlessness. You told me that invincibility was better than vulnerability.
You lied.

Whatever the future holds, whether I clear the virus or not, I won`t be held back by small minded demon nadgers – whatever form they take.

Eye Infection

2005-06-11T14:27:00.000+01:00

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I have had a problem with an eye infection in one eye which spread to the other.
I phoned my consultant at 9.10 am on Tuesday seeking advice re my eyes. I spoke to his secretary who said she would contact him A.S.A.P. Within 20 minutes she phoned back with an emergency appointment with my consultant that afternoon at 1.30 (first appointment of the day). She also assured me of an immediate back up consultation with the ophthalmic specialist if that was necessary.
With all this backup I instantly relaxed and was able to be a bit light-hearted. Whatever happened by the end of the day I would be sorted.
I prepared for an overnight stay in hospital but in the end after a thorough examination there was no observable danger to eyesight and the medication for the infection was approved.
Excellent service. For anyone starting treatment I can only say that in my experience from the first day of tx you are given VIP treatment. Also, do not hesitate going direct to the specialist immediately for anything that concerns you. It is what they tell you to do at the start of treatment.

Along with this stressor there has been the continuing battle to get satisfaction from Portman. Stress on treatment is to be avoided at all costs. It has a massive effect physically and mentally and I am certain can affect treatment adversely.
Stress can cause paranoia and obsessional thinking, symptoms confirmed by my nurse when I explained I was worried by my mental state.
“But you are only like this when you are under stress” she wisely pointed out.
It`s true. When left alone I can do this treatment – but when the bastards are trying to grind you down it is almost impossible.
I would recommend combo therapy to the secret service for interrogation purposes. After 6 weeks of this treatment you would confess anything under duress just to have it stopped.

My New Blog

2005-06-05T06:57:00.000+01:00

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If you want to follow up the events as outlined in my last post go to my new blog at http://journojunky.blogspot.com/
I am trying to keep hepc separate from my intended future career in campaigning journalism. I am so grateful for having this illness as I would never have considered this move without it. Like Jonathan, who is considering going abroad, it looks like the future has some changes in it for me as well.
Life certainly throws some curve balls but if we have a good shot at them we may well hit lucky.
Thanks for all your helpful comments. Feed me anything you like for my new blog. And any suggestions will be welcome.

Pushing Blogging To The Limit

2005-05-31T14:46:00.000+01:00

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I have not posted recently because I have been acutely depressed. Despite my attempts to get my life sorted before treatment so I could have a fighting chance at overcoming my illness I am still hounded by the ordinary affairs of life.
I am currently in dispute with my mortgage provider. As yet I am publishing no information as to the details but for the record it looks a brilliant story of lying, incompetence and sheer bloody mindedness.
As I say, I was becoming depressed over the matter because I felt like a helpless victim being mercilessly crushed by a monolithic corporation.
I was even suicidal.
But then I remembered the Blog!! My own website where I can freely vent my own frustrations and warn others of this foul firms practices. I suddenly felt a surge of power and a feeling of YES I want to live and hound these bastards as they have hounded me. I will push the power of blogging to the limit in standing up for the rights of the common man.
I will expose corruption wherever it may be. I will expose it fearlessly as I have nothing to lose. As Soltznetsin said,
“Tell the totalitarian authorities everywhere not to make that one fatal error of taking away everything from the common man. Because you will have just made him free all over again”

I have faced death and I don`t fear it. I can now live without fear. These people can do nothing to me as I expose them for the merciless tyrannical practices they employ.
There is hope in this sad tale though.
I can reveal that many staff at this as yet unnamed firm are leaving as they cannot stand the practices the firm is employing.
If only Germans in Nazi Germany had employed such conscientious measures we may not have had the second world war.
Like the prison guard at Auschwitz said,
“I never killed anyone I just opened the doors of the cattle trucks and helped them out”
I await this firms next step. You might all end up seeing my picture in the papers after all.
If they choose to try and gag me it will be headlines. They say the internet is a free place. They use that excuse to allow pornographers and subversive elements to have their say.
Well, lets just see if ordinary Joe Blogger can have his say.

Onwards And Upwards

2005-05-12T19:47:00.000+01:00

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I have been greatly helped in sorting out my week 12 crisis by visiting an American Hepc Forum. With 1,700 members there is a large information base and I found at least 6 people who are in or around the 12 week test mark and many of them have had the exact same crisis as myself.
Many wish for a negative viral response in order to stop treatment. One woman put all her meds in a bag, went into the forest and threw them all away. Her family, including her kids, went out to find them and bring them home. It was her shot night and she still went through with it.
Are we amazing people or what??
A lot of those in the forum are in recovery from addiction of one sort or another and to show such strength of character by people who the world considers weak is very enlightening. Nothing is what it seems and the media has brainwashed all of us into seeing things the way it wants.
I hope that one of the things I will take away from tx is a more understanding view of people and their situations.
So, it is business as usual for the next 10 weeks until my 6 month test. I will know after my test then whether I will be carrying on or not. A test for the virus at 6 months needs to show clear for there being a chance for their to be a sustained response at the end of treatment.

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Week 12 Results

2005-05-10T18:48:00.000+01:00

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I still feel as if I am sorting my head out as regards my latest crisis point. But something that has helped and not helped is getting my week 12 results. Confused? Yes, so am I.
My viral load at the beginning of treatment was not measured properly. They did a cheap test which only measured particles of virus up to 5,500,000 – then they stopped counting. So my viral load was at least five and a half million, but it could have been anything. The highest recorded is 45 million so I could have had anything up to that figure or even more, I could have been a new world record!!
My current viral load is 58,000 which is almost a two log drop (just cross off two noughts) but not quite. But the question that is unanswerable now is what was my actual starting figure? How can they expect a 2 log drop of an unknown figure? Someone has dropped a bollock. As if I didn`t have enough stress.
Anyway the upshot is that they are going to continue treatment till 24 weeks and then test me again – not for a viral load, but for the presence of the virus in my bloodstream. If there is any sign of the virus treatment will stop but if I am clear tx will continue till week 48.
A test at week 12 is difficult enough to cope with but I should really have had a decision one way or another. Now it is the same again at week 24.
However, having kicked this around in my overwrought, stressed and fogged brain I can see that it just may work to my advantage. Another 10 weeks is doable and I can probably hang on in there till then and have a new decision made for me.
Nothing is straightforward and I am so glad I asked for a copy of all my bloods and original viral load from the start.
I had a tremendous amount of support by comments on my blog, emails and phone calls. I hope to get round to acknowledging them all but thanks to all of you for being here.

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Could Be The End

2005-05-08T00:20:00.000+01:00

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Today was really the last straw that made me realise I could not keep on with this madness. The thought of nine more months of this hell is too much. I have tried to remain positive but the endless cloud over the whole of life is too much. If I could just have a break from all this – to get off the front line. But it is relentless. I am now hoping for a negative viral response so that I will be forced to give up treatment.
I won’t quit – I’m far too stubborn for that – stubborn mind you, not brave. But I was secretly hoping that the results of week 12 would be negative and I suddenly voiced that today to Sarah. Once it was out in the open I saw that this is what I really wanted.
I don`t feel I am letting myself or anyone else down. I gave it my best shot, I did the best I could. I forgot to take my riba tonight at the usual time. When I realised this I could still have taken them but I didn`t bother. I won`t keep doing this.

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Waiting

2005-05-02T09:18:00.000+01:00

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Patience is a virtue that is in short supply in our instant culture. It is something I am still learning but I am trying to hurry up the process as the waiting is killing me!!
My nurse was pleased with me again. I call her my dominatrix because I do everything she tells me. I bought her a small whip to encourage her in this role, but it will be up to her to provide the rest. It is never my intention to force my views on anyone.
Hee, hee. Actually that is all true and it is great to be able to have a good laugh while discussing some very serious issues. Sarah always accompanies me to the monthly meeting and has my nurse in fits describing my developing “feminine side” with all it`s attendant mood swings and seemingly irrational behaviour.
So the blood tests are in and I will be contacted as soon as they are back, hopefully by middle of May. Watch this space. I went into a depression after the tests and lost interest in blogs and everything. But as Sarah pointed out this waiting time is like a no mans land where the future of continuing tx is in limbo. I have noticed others who were waiting for their 12 week pcr results not posting for a couple of weeks while everything hung in the balance. I understand this now.
But I do find blogging therapeutic and whenever I am writing I find I lose myself (and my misery) so I will continue to blog away. I also find blogging about other subjects other than hepc a light relief from the illness. I have also discovered blogs other than hepc which I visit for a welcome break.
There is a notable one by a guy called Alex who lives in Milan and does a sort of travelblog of daily life in Italy’s capital. I try and avoid those blogs inviting me to enjoy other couples sexual escapades of one sort or another. With so much time on my hands it would be easy to get caught up in such things, and I need ALL my energy to fight this virus.
If the weather improves I hope to get out on my bicycle. It hasn`t been out for three years so could do with the exercise. I have discovered that not everyone loses weight on tx and ends up looking like a junkie. Some people who don`t have the side effect of going off their food can turn to food as their comfort and end up really overweight after tx. Watch them Danish pastries Ron! Better cut them down to just half a dozen a day!
Thanks for all your good wishes. The support of fellow heppers has been crucial in my journey.

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Eyesight Problems?

2005-04-28T12:44:00.000+01:00

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Prompted to write this post after reading Alans experience about his eyes.
In my very first interview with my nurse where I began to learn some of the facts regarding hepc she listed some of the side effects of treatment. One of them was that there was a small percentage risk of blindness and other lesser problems. She made a particular point of mentioning this because out of the 8 patients she has dealt with one had to discontinue tx after 2 months due to retinal bleeding.
This, amongst other things convinced me that whatever happened I would not be going on combo therapy!! This was August 2004.
However by September my nurse had persuaded me to go for a biopsy in order for me to make a more informed choice. I had the biopsy in November, and saw the specialists letter to my doctor recommending that I go on tx as within the next ten years I would have a progressive liver disease.
So in December I decided to go ahead and we set a date for tx Feb 1st.
One of the things that my nurse insisted on was a full eye test. She said that I should explain to my optician that I was going on interferon and to have a complete test.
When I saw the optician I got full eye lock and said:
“What I am about to say is serious so I want you to take note”. I then explained all about tx.
Well, when you impress upon people the seriousness of the situation you get excellent treatment and service. I was booked for two visits to the opticians and had 2 hours of the most exhaustive tests I have ever had. She had obviously looked the subject up since I first visited because I got all my questions answered.
I signed a waiver form at the hospital which said:
“Side effects can include visual disturbances” and “If eyesight reduced go to A& E immediately”.
The optician said,
“Any problems don’t wait to see me go straight to the hospital”.
My nurse emphasised this and said to phone her immediately if I got flashes before my eyes. As it happened after my second shot which I take at 9pm I awoke through the night and couldn’t open my eyes. This lasted for 10 minutes or so. I also got one white flash in my eyes. I reported all this to my nurse by phone the next day but I was seeing her that afternoon anyway so we sorted it out then.
For a few years before I discovered I was hepc+ I experienced problems with glare. The world seemed a lot brighter than it used to be. I put it down to the ozone layer and thought no more about it. Since starting tx though I have experienced a lot of problems with glare and have had some absolutely storming headaches. I never used to get these before.
I`d be very interested in anyones comments on this post.
I see tx as pretty much of a lottery depending on who you get and how well they have done their homework.
After 8 months of getting to know my nurse I can see that I have got one of the best.

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Week 12

2005-04-19T17:31:00.000+01:00

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Please note the following refers mainly to Geno 1.

Today is week 11 of tx. Tonight I will be having shot 12. Next Monday I will be blood tested for many things but the most important test, the absolutely crucial test, is the viral response. Unless I have achieved a 2 log drop in the amount of virus in my blood, treatment will cease. Full stop!
I know enough now that no amount of pleading will change my nurses mind because the facts speak for themselves. People that do not achieve at least a 2 log drop at week 12 are classed as non-responders. They are the minority that will not respond to this particular form of combo tx no matter how long they are on it or what mega dose they are put on.
What happens to them? I don`t know really. I suppose it is just down to living as healthy a lifestyle as possible and keeping going as best you can. All this is still new, we just don`t have enough data.
If you are geno 2 or 3 you are different. You may not even get a 12 week test because you will automatically get your full 24 weeks tx and be expected to clear the virus.

For me as a geno 1 I put off thinking about the implications for week 12 for as long as possible, but now that it is imminent I have looked at it and come to a place of acceptance. It is certainly a biggie. Rarely are you faced with your own mortality so profoundly as when you discover you have an acute disease. You don`t look all this in the eye and come away unchanged. It can never be business as usual. Some things will change.
Just as I am writing this Sarah phones me about some carpets we need to order. We had a flood last week and these are things that need sorting out. But her call distracted me from writing this post – and irritated me. After awhile I started to get downright angry.
"Why are you bothering me with this? I don`t need this shit". Hmmm. This is a bit of an over the top reaction to what is, after all, a minor interruption. There`s something else going on here. I took a look inside to see what was really the issue here – and suddenly I saw it. I am writing of facing chronic illness and ultimate issues and she is going on about carpets.
It took me right back to when I was about ten years old and out walking with my dad. It would have been 1965, the war had only been over 20 years and he said this:
“I could never understand family and people back home writing to us on the front line complaining about rationing and that my mother couldn`t get nylons, while all around every day you were seeing your mates get their heads blown off right beside you.”
Even at the age of 10 I could see his point.
He was one of the lucky ones who made it home – minus a leg which he left somewhere in France. Kinda puts things in perspective doesn’t it?
On a far lesser level, but nevertheless just as real, is this war we are in. We have to face the enemy and do what is necessary to gain our freedom. None of us chose to be on combo. It’s a reaction to a threat.
For me, coming to a place of acceptance of all this has only been possible through my faith in God. People say that belief in God is just a crutch for weak people. Yeah, well, I need more than a crutch to get me through this load of bollocks, I need a total life support system and 24 hour permanent care. And that`s just what I get with Jesus.

Gotta go now, got some carpets to sort out.

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SSRI`s

2005-04-18T19:17:00.000+01:00

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As I have already revealed in a previous post I decided to use an anti depressant about 5 weeks into tx. Prozac is the original SSRI . The drug companies have brought out about half a dozen others but this is probably because each firm likes to have it`s own brand so they make more money. Please don`t ever think that drug companies are run by nice people who want the best for us and have our best interests at heart. They are in this for the money and they make sure they make plenty of it.
My medication, just for combo itself without all the other little extras is £14,000. If you want to see how much drugs cost go to the British National Formulary site. It’s the official NHS pharmaceutical guidelines and tells you everything.
I first used prozac in 1999 for some moderate depression. I liked it a lot and it really helped. Prozac works by cutting down the amount of serotonin that is taken up by certain receptors in the brain. The result is the brain gets more serotonin than usual. If the depression is caused by low serotonin levels then the prozac raises those levels back to normal.
I don`t like being on any medication for a long time because your body gets used to it, there may be side effects (sides) and you could always get physically or psychologically hooked. So after awhile I discovered a herb that is natures equivalent to prozac. St Johns Wort has been used in Europe (particularly Germany) for centuries for depression. I found it to be as effective as prozac but without the sides.
St Johs Wort (SJW) is used for Seasonal Affected Disorder (SAD) which is a depression some people get in winter due to lack of sunlight. Sunlight stimulates the pineal gland which increases the amount of serotonin released by the brain. So since 2000 I routinely used SJW during the winter months and found it a massive help.
My nurse told me I would have to stop using SJW before commencing tx. There`s a very good reason for this as SJW speeds up the rate at which chemicals are metabolised in the liver. As combo is there to kill the virus we want it to stick around the liver for as long as possible doing it`s job. We don`t want our daily dose of riba being hurried out of our poor old livers before it`s done it`s work.
So SJW was out and I did without for awhile. But tx hit me hard and I needed a chemical boot.
The bog standard dose of prozac (and all SSRI`s) is 20 mg a day. There is a reason for that. The drug dealers do a series of tests on the new drug. In the case of prozac they discovered that the effective dose was anywhere from 10mg to 40 mg. So they split the difference and produce a bog standard capsule of 20mg.
I quickly discovered that I didn`t need 20 mg and having self medicated all my life I just opened up the capsule and took half. Sometimes I just took one every two days. Whichever way, I was in control. If I felt myself getting too hyper I just missed a dose one day. I never increased the dose. The horror stories in the media are probably of people who have taken too much SSRI by accident or on purpose.
I did know of one girl who if she had an argument with her boyfriend would take 2 extra prozac along with a couple of spliffs. Such people tend to be the headline makers.
There are different SSRI`s and the one you will get is probably dependant on which drug dealer gets in first with the free set of golf clubs for the doctor.
But surveys show that 70% of patients get what they want from their GP if they know what to ask for.
The depression experienced on combo can be crippling. If it`s a decision between taking an SSRI for awhile or giving up tx – I know what my choice is.

Martin Bolton Is Useless

2005-04-14T13:57:00.000+01:00

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Haven`t posted for a while as I`ve been in the US of A (online). Been cruising some sites and forums getting some different perspectives on all this. So I am in this forum at 6am and there`s not many people around `cause Americans like to sleep at really weird times – I don`t know how they get any business done. Anyway I ask this question and who should walk in and answer it but Martin Bolton! Martin`s from the U.K. as well so what a surprise to see him there.
Well, then I remember that it was Martin who told me about this particular site and I said how really good it was, loads of help etc, and he says well I`m glad someone listens to my advice.
So I thought I`d do a bit of reverse psychology and tell y`all (notice the American accent there) how useless Martin is.
All the advice I have had from Martin is useless. To be honest it`s a miracle I have got this far on tx listening to people like him. Just because he`s got more experience than all of us put together and is coming up to his 3rd time on tx doesn`t mean he has learned anything, does it? That web site of his looks like it was chucked together in 5 minutes, and it`s full of useless bits of information that you are never going to use.
Also, and now I`m going to get really personal. I`ve found Martin standoffish. He`s never answered one email I`ve sent him and when he has answered well I sit in unbelief that anyone can spout such unhelpful rubbish.
Take my advice, if you want to have a successful tx you will avoid Martin and his sort and take no notice of what they say.
So I`m back of to the US of A. Maybe someone is awake there.

Y`all take care now.

Combo Starters Read This

2005-04-07T18:55:00.000+01:00

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Hepatitis C is not one virus but a series of viruses that for convenience sake have all been lumped under the general term hepatitis c. What distinguishes one virus from another is the genotype. The genotype will determine the amount of ribavirin you have to take and the length of treatment.
Genotypes 2 and 3 are the easiest to treat, require a lower dose of ribavirin and need 24 weeks of tx.
People with genotype 2 and 3 will be on 800 mg of ribavirin.
Both groups will be on the same level of interferon. Inteferon is a protein. It is naturally produced by the body. It is not a poison. To think that you are injecting poison into yourself when you inject interferon is complete nonsense and is psychologically damaging.
Genotype 1 people will be on at least 1000mg of ribavirin. If they are 75 kilos or over the amount increases by the weight of the person. For example, I am genotype 1 so automatically this puts me on 1000 mg of ribavirin. But I am also 85 kilos, which is 10 kilos over the standard weight so I get an extra 200 mg of ribavirin.
So all in all I take 1200 mg of ribavirin daily. 3 tablets in morning and 3 tablets in evening.
Compared to a genotype 2 and 3 who are on 800 mg daily, this is a massive one third extra every day. You don`t need to be a rocket scientist to figure that the more ribavirin you are on the more symptoms you are likely to get and the rougher the ride.
Also, genotype 1 people will be on 48 weeks tx – a longer haul all round.
I have yet to find anywhere, anyone who can tell me what ribavirin actually is. But all agree it is an immune system stimulant that enhances the effect of the interferon.
When looking for information and in particular identification with someone who has hepc and is on tx it is important to determine the genotype and therefore the amount of medication they are on so as to get a true picture of whether this person is likely to have similair reactions to you.
I have yet to find anyone, anywhere who has had such an extreme reaction as I had on my first day of tx. My continuing experience is fairly miserable. I can only put this down to the fact I am on this high dose of ribavirin. You may not get this extreme reaction - I hope you don`t.
In a previous post I mentioned that I tried to get my ribavirin reduced, but my nurse wasn`t having any of it – so that`s that. I do what I am told.
I hope this is helpful if you are just starting out. When I started my tx there were only two other hepc bloggers, Ron and Jonathan. It was easy to categorise everything and take everything in.
Now, at the last count there were 14 hepc bloggers. For a newcomer it`s a daunting prospect to be faced with this mass of often seemingly contradictory advice.
My personal advice (take it or leave it) would be to find a couple of people of the same genotype as yourself and get to know them first. Read their stories, get a feel for them. Then you can move on. To be honest if you are genotype 2 or 3 and are just starting out and you happen to be reading my blog - you are probably reading the wrong blog. Find someone of your own genotype (sounds almost racist, doesn`t it) and come back to me later if you like.
This shit is heavy enough without having to wade through a mass of information – a lot of which will not be relevant to you.
I know that you will be able to get help from any of the commune of hepc bloggers, but it might be helpful to mention your genotype and amount of medication.

Have a safe journey. I wish you freedom.

Celebrating All Things Italian

2005-04-07T08:50:00.000+01:00

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The pope is being buried tomorrow and Sarah is in Italy.
These two events are entirely unconnected. Sarah was already booked to go and see her family months ago, but it is an interesting time to be there. From all the news coverage you would assume that all of Italy is in mourning. Nothing could be further from the truth. In fact most Italians couldn`t care less about the popes comings or goings. Having spent a year out in Italy there were many things I found fascinating and contrary to what I would have expected.
For example, I was aware of the papal stance on contraception. So powerful and deeply held is this that in Africa where AIDS is out of control and where protected sex seems like a good idea, condoms are still prohibited by the catholic church. Yet here in Italy the home of the papal see condoms are freely available and on display everywhere.
One would have thought that in the home of the leader of one of the worlds largest religions that seems to have a definite downer on sex you would find a very narrow and restricted television and media system. No, you couldn`t be more wrong. I was amazed to see nudity and semi-hard core sex commonplace on Italian TV years ago. Magazines containing hardcore sex, including bestiality, have always been available from the corner newsagents, certainly since I was first there in 1977.
With all this sexual freedom you would think that Italians are having a great time in the sex department. But not so. I was extremely puzzled to read in an article written in 1989 that a survey showed that many Italian men preferred to watch a pornographic video than experience the real thing.
I don`t understand this. It`s like having a finely tuned Maserati outside on the drive but instead of taking it out for a spin, you sit inside playing with your dinky car.
All you counsellors out there explain that one to me please.

But one thing you would expect and you certainly will find is chic. Italians have style coming out of their ears. It exudes from every pore of their skin. There is no finer entertainment than sipping a perfect cappuccino out on the piazza and watching the floor show that is everday life for the Italian. If living was all about lifestyle then Italians have it with a capital L.
I still cringe slightly when I think of the questions my Granny asked Sarah when they first met in 1976. Granny of course, would have seen two world wars and was born just as the Empire had reached it`s zenith and was on the wane.
“Do you have toothpaste in Italy”? Granny asked.
As Sarah and I were still getting to know each other I was interested to see how she would respond to this.
“Yes, we have toothpaste” she replied sweetly.
So far, so good. Granny sat for a few minutes digesting this information and then to my astonishment asked,
“Do you have soap powder in Italy”?
Well it was obvious that a more detailed description of everyday life in that far off distant land was needed.
Still, when you look back you can see how far we have travelled and how sophisticated our tastes have become.
I can still remember the controversy there was when supermarkets started selling alcohol back in the early seventies. Before this the range of wines and beers were miniscule. Now, in Britain, we can purchase wines and beers from all over the world – something you cannot do in any other European country. You can buy fine wine in France, but it will be French. In Italy, again excellent wines but Italian. Only in Britain can you get such a huge range and variety of wines.
And it`s the same with food. The French and Italians eat very well but it is home produced. You cannot get foreign food. Here in Britain we can eat pretty much what an Italian would eat, or sample food from many other cultures.
I still remember as a kid (so early 60`s) having a long, long pack of spaghetti in the food cupboard. We never ate it. It was there for years till it was eventually chucked out.
Us Brits have come a long way and we can be sophisticated if we want. And on a warm summers day when the sun shines and we are sitting outside sipping our cappuccino……….

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I Have Seen The Enemy And It Is Us

2005-04-02T22:17:00.000+01:00

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This post is not about hepc.

Is Germany re-arming again? Have the I.R.A. declared a new campaign of violence against mainland Britain? How many tall buildings in the U.K. have had airliners smashed into them? Just wondering. I know I don`t get out much but I am pretty sure I would be aware of such significant events.
How is it then that when I visit my local country railway station (entirely unmanned and deserted) I hear loudspeaker messages constantly warning me about suspicious baggage left unattended. Such baggage, I am told by a sombre voice, is liable to be removed by the security services and destroyed or blown up.
I could feel the riba rise within me. Who started this campaign of fear? And why? So many government forms I receive now justify asking personal questions or list just about every area in my life that they now think they have a right to access – all in the name of preventing this nameless and faceless and almost certainly non-existent terror.
Listening to that tannoy message I was reminded of the Weimar republic and other shaky governments. When things are looking dodgy at home it`s a good idea to create an imaginary outside enemy that we will all unite against and forget the crap the politicians are serving us up.
The Islamic community in this country are very happy. So they should be. We look after them. They experience far greater freedom in this country than they would in their own. They want to see Britain continue just as it is. They do not want to destroy it. They are not crying out to terrorist factions all over the world pleading to be released from their bondage. No Sir, everything is O.K. please don`t rock our boat.

It`s small children that I feel the most for. They now go to school where they are locked in behind doors with security cameras trained on the outside world where lurks all manner of danger. In my work I visited many such schools and if a child should, without thinking, open the main door to anyone it was major drama. A hysterical teacher would begin a rant,
“You don`t know what`s out there. You`re exposing all your friends to danger”.
I hope we are training up lots of counsellors to deal with these kids when they are in their teens, traumatised, full of fear, their only relief to be found in an alcopop or a pill.
It`s very sad.
What we need is a Big Brother to look after us.

Disciplining The Child Within

2005-04-01T20:57:00.000+01:00

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Alternatively this post could be called “Why don`t you bloody grow up”, but everyone is so used to and have become comfortable with psycho-babble that I use it myself all the time. Nick made some interesting points about tx and it`s potential for making positive effects for change. Sue picked up on this straightaway and said she had been wondering whether the inner child could be reached and helped. She said that treatment seems to have enabled more strongly her inner challenging child.
These thought s resonated with me and have been percolating around for awhile. I remenber Ron, way back somewhere in the beginning of his tx compensating for what may have been a riba-rush. He was in a meeting and someone was banging on about something and Ron was all fired up to say something- but didn`t, just in case it wasn`t him responding but the tx.
I had the same response myself a week or so ago. Someone irritated me on the road and normally I would have at least tooted, long and hard. I may even have got out and had a rant (only happened twice in last ten years). But, because I was compensating for the combo effects and know how dangerous getting worked up is I did neither of these things.
Firstly, I had been well prepared by my nurse on this very issue. She said,
“You can make any gestures you like, but don`t get out of the car”.
Talk about being mentally prepared beforehand! Thanks, my nurse, you are a star.
After the incident I suddenly realised that I had exhibited more control while on these emotion charging chemicals than what I would have shown if I had been normal. I thought, well there is no reason why I can`t be this better, more controlled person even after treatment ends. I mean who wants to go back to normal behaviour if it is not normal for your age i.e. juvenile.
As I surf the blogs I notice all of us struggling with this issue. Peter, over there in Vermont, says that tx is throwing up all sorts of issues that he would probably prefer to have lie dormant. It`s a very unusual side to the combo and one that I think we are all finding fascinating, although not always welcome.
May our journeys help us all to get in touch with our inner child so that we can heal the hurts, discipline where needed and come to the place where we can unconditionally accept ourselves for the unique being we are.
One of the great legacys my cat left me is that she taught me the power of unconditional love. No matter how grumpy and bad tempered I would get - and off she would scurry and hide – she would always come back out of hiding, seek me out and jump up for a cuddle. She would look straight into my eyes as if to say is everything alright now? And I would say,
“Yes, everything`s alright now”.

Going away for a much needed weekend break with Sarah. Catch up with y`all soon.

New Kid On The Block

2005-03-30T16:24:00.000+01:00

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We may be adding a new member to our on line community. My nurse asked me awhile ago if I would be a telephone buddy to a new starter on tx. I said sure, no problem, but you can guess what my next question was,
“Does he have internet access”?
She told me that she didn’t think he did and so I outlined my story and how vital you guys had been to me. It was very gratifying then that when Keith phoned yesterday and I asked him about access to the net he said that he didn`t have it but that our nurse had advised him to get online.
Wow! What a shift in thinking. I know that most of us were warned or at least discouraged to go online for answers – and having seen some of the stuff in certain quarters I can see why. But now with this new wave of online heppers the established thinking is changing.
Well done all of us! But especially to Ron and Jonathan the original pioneers and Martin who has given us the first unofficial hepper website.
Sit there and feel the glow of achieving change in what was, let`s face it , a desert.
I visited a blog directory the other day and typed in hepc and nothing came up. I added my blog to their list and now when you type in hepc one blog comes up, mine. I would urge you to post yours there www.blogwise.com

So when Keith phones me and introduces himself what is his first question?
“What symptoms can I expect”?
I did give out a little gasp at the simplicity of the question that exposed the complexity of the reply.
What do you say? And again, (correct me if I am wrong) but I think all of us have complained at the lack of information pre-tx, but what are they going to tell us?
It’s a difficult one. If I lay it all on the line it may blow him away, if I tell him too little he can always come back later to say I have bullshitted him.
I played it low key but said there were would certainly be some flu like symptoms, fatigue and general malaise and not to plan to do much after your first shot.
Fortunately, he has said he will be online by next Tuesday, his start day so he will have access to all of us. Which means there is nothing that can happen to him that one of us hasn`t experienced at sometime.
Oh dear, I hope I am not tempting fate. In fact, I take those words back because there is always the unexpected.

Shot night was last night, number 9. I`m now into week 8 of tx. Feeling a lot more comfortable with my symptoms and learning to live with them.

Is This My Feminine Side?

2005-03-29T07:27:00.000+01:00

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So, apart from having the flu every week, experiencing riba-rage attacks, feeling generally shitty, fatigued and can`t be arsed with anything and going around bursting into tears like a demented Gazza – apart from all this, what good is the treatment doing me.
Well, quite a lot actually. Aside from what the combo is meant to do, namely, clear the virus what else am I getting from this consciousness changing experience.
I said to my nurse just 3 weeks into tx,
“Previous experience with mind altering drugs is a definite advantage when you are on combination therapy”.
She said nothing but smiled sweetly and knowingly to herself. She is very pleased with me, by the way, and says my bloods tell her the tx is working. I have put on a couple of pounds which she was delighted with, even though, according to the NHS weight chart I am 2 stone overweight already.
“You`ll be needing that weight later on” she said, with a knowing nod that did send just a mild chill through me.
The only people who take that damn weight chart seriously are dyed in the wool “health professionals”. It`s the biggest load of bollocks since Anton Mesmer claimed he could heal “hysterical women”, by putting them in baths of iron filings. Mesmer wasn`t that daft, as he soon discovered that once you had persuaded a woman to do that, well, need I say more………He was french, of course.
Speaking of women, that is the first major area of change in my thinking. I am familiar with the term paradigm shift but never use it because I don`t like it. It doesn`t tell you anything does it. I much prefer the terms consciousness changing, mental shift or mind blowing. But my attitude towards women and my understanding of them has increased massively.
It all began when I complained to my nurse of waves of nausea, especially early in the day. She said,
“Yes, that`s normal, it`s like morning sickness”.
Having never experienced pregnancy and now that I am 50 never likely to, I did find that rather an odd comment. But I thanked her anyway and let the thought drop into the file marked “odd comment, but may be something in it”.
Next, I was on the phone to my sister and telling her all my symptoms. She is a “health professional”, but in her case I mean that in the nicest possible way.
I was going on about my morning sickness, mood swings, fee;ing hostile and paranoid, being emotional and weepy, and she said,
“I feel like that all the time, or at least some times of the month!”
Well, after the initial shock thought of ,
“My God, combo therapy is turning me into a woman”, I began to see that maybe there might be some advantages – after all, I `ve pretty much tried everything else lets go with this. I have never believed in fighting the symptoms, never. And still don`t. It takes a lot of guts to let strange, alien feelings just wash all over you, but it is the very best way to get them to pass quickly.
My next paradigm shift relating to women came when I was sitting listening to a radio program on Pre-menstrual syndrome (PMS). It was a phone in and there was a professor there (a man) to answer all the questions. Wow, it was pretty graphic and the professor instantly went up in my estimation as he was on the receiving end of all this female angst.
But as the program went on I found myself agreeing with the women and their complaints. One would say,
“Sometimes I feel so tense I think I will explode”.
Another said,
“Sometimes I can`t face going out and just want to sit in the house and cry”.
And I am sitting there nodding away and saying,
“I know what you mean dearie, yes, I know what you mean”.
THEN, the final forbidden thought entered my consciousness, the final blasphemy was uttered that no man should ever acknowledge,
“I have never really understood women, have I”.
Well, there it is, my confession. I`ve lived nearly an entire lifetime and never understood 50% of the population.
Combo therapy, it ain`t all bad.

The Healing Power Of Tears

2005-03-28T19:37:00.000+01:00

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Well, well, well, look at all these posts. Someone`s feeling better. Yes, I really feel I have turned another corner in my journey on tx. These posts are the result of stuff that has been simmering around in the pot for awhile now. The prozac has definitely helped but also I have come to the conclusion on quite a few issues raised by tx and the effect on my circumstances.
Some articles I have come across have really helped me and I have listed these.
Tears have been a great help and healer to me and I really can`t do any better than to list these two links to articles on this issue that have been useful.
http://www.geocities.com/kidhistory/trauma/tears.htm

http://www.compassionconnection.org/Healingtears.htm

Hope these are as much help to you on your journey as they have been to me.

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Profit And Loss

2005-03-28T17:26:00.000+01:00

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I had been wondering ever since I had been diagnosed hepc+ why I had begun to cry so much. Of course at first I thought it was just me, until I discovered that everyone got the same effect. Emotional and weepy is even listed in the official side effects in the Roche leaflets and their Pegassist booklet. Why?
One of the reasons I think is loss. I caught a comment on Jonathans blog last week how he had been admiring himself in the mirror. Nothing new there, of course. But I commented on his post that I had just done the same thing that morning. Then it struck me that I hadn`t checked myself in the mirror for weeks but had always done so before.
You see, I used to go to a gym. I used to do some weights and punchbag work and then swim and sauna afterwards. Like everyone who goes to a gym, or health club as they like to be known now, I was very conscious of my body. There are mirrors everywhere and if you are doing serious weights you are concentrating on muscle definition etc. So you are either looking at the pretty girls working out or yourself – it`s the nature of the sport.
But because of an unknown fatigue I was experiencing 5 years ago or so I stopped weight training, but still kept up the swimming and saunas. Now, at the beginning of tx I stopped even that. That is a big loss out of my life.
Then there is my work, my business which I built up over 14 years. This same unknown fatigue along with a general malaise caused me to wind it down after a hernia operation last year. It was through routine tests because of the operation that I was discovered hepc+. The discovery of that in itself involves grief and loss.
Then, naturally there is my age. I am 50 this year. Time is moving inexorably forward, never back. In the excellent Startrek film “Generations”, the one where Catain Kirk is killed, there is a powerful scene between Dr. Soren ( Malcolm McDowell) and Captain Picard (Patrick Stewart)
Soren, whose entire family were wiped out by the Borg, is desperate to get back to the nexus, a place where time has no meaning, and where you can live out your hopes and dreams over and over again. He tries to get Picard to help him get there. With a wonderfully wild look in his eyes, Soren says,
“Time is the fire in which we burn, Captain. There is so little time and we leave so many things undone – I know you understand”
As it happens Picard understands only too well. His brother and his nephew have both just been killed in a fire, and the normally stoic like Picard is visibly shaken.
All this is about loss. Loss of health, youthfulness, mental acumen. Professional people normally on the ball, being forgetful, dithery, irritable, can`t be arsed any more.
I found a great article on this which I read the other day and which has helped me greatly. www.hepc-connection.org/newsletter/01-03_04/depressed.shtml It mentions the importance of tears as a healing aid in this process of coming to terms with a new chapter in life. Thankfully, for most of us it is a chapter that only lasts 6 months or a year. But still a significant amount of time.
In my next post I will share some stuff on tears and print some astounding discoveries on the nature of tears themselves.

For My Little Girl - And Her Man

2005-03-28T15:04:00.000+01:00

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Steve is a recent newcomer to the hepc blogging community. His little girl put a message to all of us on his blog, which I thought was great. Her dog has just died and I felt I wanted to say something so I left a comment for her. It really brought it home to me how this is a family fight and how we are so dependant on those closest to us for support.
My daughter, Gioia (pronounced Joy-a) and her husband Drew spent the day with us yesterday. Apart from a couple of waves of faintness I was pleased that I was symptom free all day, and we had a great time. I wanted to share with my little girl how much she means to me so I am reprinting my note to Steves daughter here. It will bring back memories to Gioia of times of sadness and closeness we have shared together.
Hi Steve,
Just a word to your little girl. Hi honey, you are very brave and your words meant a lot to me. You Dad is brave too and I bet you are really proud of him.
I lost my cat this week. She was nearly 11 years old. I miss her terribly and it hurts. But whenever I remember her I always remember the good times and find myself smiling.
Maybe your dog and my cat are playing together right now - I would like to think so.
Your Dad has a big fight ahead of him and is going to need lots of cuddles. I know you will be able to take care of him.
My little girl is 28 and married, but I still need her in my life as much as I always did.

Bye for now,
Paul.

Out Of The Darkness - But Remaining Silent

2005-03-28T10:26:00.000+01:00

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Following on from my recent post “Irritated from Shropshire”, I found an extremely interesting comment from Ron which I reprint here to make sure you get it. Ron says,
“I follow your thinking about dentistry – the Italian experience seems too profound for it not to be considered a big risk factor here.(It also reminds me – when I last went to my dentist I forgot to point out to him – I would wager I was the only patient that day to sit in his dentist chair who could say for certain they were PCR negative. For me that highlights the risk!) (I was also the only patient that day who was, on the other hand, safe from infection – I am already on the tx.)
But it also makes you think about barber shops, hairdressing salons, ear piercing and tattoo shops as well as GP surgeries and hospitals themselves. Microscopic drops of blood – and the HepC virus lives on in dried blood longer than the HIV virus. No one ever gets nicked or cut having their hair cut? Those haircutting tools are sterilised between each and every customer? I don’t think so.
It reminds me – I counselled inmates at HMP Pentonville for 5 years in their Health Centre. The only room available consistently was the eye examination room, which I learned over time was also used by the phlebotomist. So I sat in a room for a day a week over a long period of time where blood was drawn. No chance of a drop of dried blood in a room constantly used to take blood samples? I wouldn’t like to guarantee it! How can the risk be measured?
And the Egyptian experience – all those people were infected by using the same syringes to mass inoculate people against the dangers in their water supply. Did mass inoculations in this country never involve the use of the same syringe? (What about the school boy jokes about my injection hurt more than yours cause the nurse changed needles before your injection but not mine? Was this not a reality?)I think there are a number of areas where this virus presents a higher risk than we can dare to take seriously at the moment. Think about the impact on the general population if these risk areas were taken seriously!”
End of comment from Ron.

After reading this I sat for five minutes taking on board the full impact of this whole scenario and have come to the decision not to mention this subject again.

Lunatics??

2005-03-26T18:20:00.000Z

O.K. I just had to pick up on Rons comment on Wendys blog about the full moon. Yes, it is totally true and a well documented fact and as anyone who has worked on a psychiatric ward will tell you – the full moon phases have a definite and measurable effect on “clients” in the loony bin.
A friend of Sarahs pointed out to her that her husband behaved strangely at certain times of the month. Hah!! Now there is a new one, its usually the woman who has the monthly irrational phases. Sorry, girls but its true. He became irritable and hyper and tended to drink more.
Well, I didn`t believe it for one minute but the next day I was in a major psychiatric hospital in the course of my work. Rather sheepishly I asked the head honcho if she had come across anything related to the full moon. She laughed and told me what I have just told you. I looked up lunacy on the net. Just do it . It will blow your mind.
I always get a calendar with the moons phases on it and am extra careful around that time.
Finally, and for me the clincher. It says in Gods Blog that He made the stars for signs and to have influences on us.

Irritated From Shropshire

2005-03-26T13:09:00.000Z

Just come from Nicks blog. Nice one Nick, and well done on getting BBC to change policy on their photos used to advertise hepc – no mean feat.
The issue keeps arising, where do some people who have no background of intravenous drug use get hepc?
When I went for my first appointment to see my hepc specialist nurse I was completely unprepared for the bombshell about to be dropped. I assumed hepc was a mild complaint which could probably be cured by antibiotics! Blissful ignorance. We all know the stunning effect of the truth.
I didn`t talk about it with my wife for three days so as to get my head around it. It was she in fact who brought the subject up. Sarah is Italian and had been on the phone to her mother in Italy. Sarah mentioned to her mother in passing that I had been diagnosed hepc+ and had just been to the specialist. This 80 year old woman ( a foreigner mark you) knew exactly what that meant.
“Oh, that`s serious” she said and proceeded to elaborate.
So imagine my shock when Sarah challenged me to tell her everything that had been said at the hospital. As it happened Sarah was booked to go to Italy a few weeks later and learned more about hepc in ten minutes than she had in hours over here. Sarahs sister is a health professional and her cousin a doctor ( both in Italy)
It is a well documented fact in that country that hepc was spread mainly due to poor dental hygiene techniques prior to the AIDS outbreak in 1982. When you consider all the facts involved the conclusion is inescapeable.
It only takes a microscopic amount of blood to spread the virus. No matter how insignificant the treatment at the dentist there is almost always some blood. Before AIDS when dentists got smart in order to protect themselves, they never wore gloves or masks. Not that gloves or masks are significant in protecting the dentist or the patient from any blood borne virus – it`s just a sign of a mental shift.
Far fetched? O.K. imagine you do not have hepc. You do not want hepc. Would you sit in the same dentists chair that someone who you knew for certain had hepc had just sat in?
I rest my case.
I am beginning to recommend all my friends (all around the 50 mark) to be tested for hepc. None of them have ever used drugs of any sort – most are going to go for the test. Watch this space for results!!
Government guidelines admit to dental hygeine being a risk factor for contracting the virus, but only in foreign countries. Is Europe foreign? I thought we were Europeans.

By the way, more misinformation by the government. My daughter works in sexual health educating teens in safe sex. An almost impossible job!! She has just learned that her department is to get extra funding to heighten awareness for hepc as a sexually transmitted disease!!!
How is it then that I have just read a report ten years in the making that there was no link found whatsoever that hepc could be transfered sexually between monogamous couples. www.hepc-connection.org go to newsletters 12/10/04
This report will come as a great relief to those of us who have partners who maybe wonder in the back of their minds..............?
Incidentally, as you will discover, hepc connection is a great site and their arhive of newsletters the most impressive I have seen.

Well, there it is. Take it or leave it.
When all is said and done it doesn`t matter a damn anyway. We have the virus by whatever cause and we need to get rid of it.

Signed,
Irritated, from Shropshire.

Hepc Bloggers - The Genesis

2005-03-26T06:02:00.000Z

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After first learning I was hepc+, bewildered, frightened and confused I decided to go on the net to see if there was anything out there. I was incredibly blessed to go straight to the norwich-hepc.org.uk website. There I found stories of other heppers experiences. Some were helpful, others not.
The very best story was Michaels, which I still rate as one of the most succinct and poignant accounts of a successful tx. One of his gems was “Avoid stress at all costs”, something I have attempted to do. This was in December 2004. In January 2005 I revisited the site and noticed a link to “Jonathans story”, I clicked on that and experienced what is called a defining moment.
Some guy was actually recording his experience on tx while it was happening!! I had never come across blogging before and was astounded that such things could exist.
I made a comment on Jonathans blog and he commented back , and so I entered the hepc blogging community on January 6th.
Jonathan gave me a link to Rons blog and another fellow hepper was added to my list. Finding a new blog is like discovering a book by your favourite author. I settle down and get ready to be introduced to another character in the play.
New characters came along and eventually WOMEN entered the formerly male only community. Sue, from Toronto, had been a background figure for some time, making insightful comments, but Wendy Meister was the first official lady to join the ranks on Monday 28th February.
Now, this is where I could get into trouble, because after this point things began to explode slightly and I would hate to keep making a list and find I had missed somebody out.
Martin Bolton has already had a big plug from me for his website, and now he has started his blog.
After a break away of just 4 days I have come back to see at least 4 new names to add to the list. This is amazing!! If I was going to go through treatment for hepc there is no other time I would have chosen to do so than this.
Shakespeare said, “There is a tide in the affairs of men, which when taken at the flood leads onto fortune”. For those with hepc and for hepc awareness this is that tide.
Get your surfboards out, dudes, this is going to be a big one!!!

Prozac

2005-03-25T20:53:00.000Z

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Trying a new technique for posting by composing in Word and then transfering to blog.
Martin told me how to do it after I lost a posting in the act of publishing. It has worked and it`s a great relief to know I won`t lose all the work again.
Great to see Toronto Sue amongst us. Also, Pete, from Vermont, USA who has left a couple of interesting comments on my blog previously.

Its interesting that as individuals come across our different blogs that they seem to identify with the person that seems to be having the same tx experience and then contact them directly.
I had a very moving account last week from a lady whose husband was going through tx, having the same symptoms as mine and running his own corporation!! What?! At least I don`t have to do anything.
It`s also very sobering to read about fellow hepppers like Tommy who appeared in Ron`s blog a week or so ago. After experiencing multiple infections he has become a virtual recluse. The problem, as Ron pointed out is that if you are alone in that situation you could very easily neglect yourself. I know I could lapse into not caring for myself if I was alone.

My depression which was fairly crippling has lifted a bit. This is due to prozac which I take in liquid form so that I can get an exact dosage. The bog standard dose is one 20mg capsule once a day but having used prozac before for a short while in 1999, I found I only needed 10mg a day – only half of the daily recommended dose. It seems and to be kicking in nicely.
Again, thanks to Martin who very helpfully emailed me with cautionary tales of SSRI`s on tx and I would certainly agree that if you can manage without them it is best. But it was coming to the situation where it was causing me to be crippled in my daily life so I have gone for this and it appears to be working.
Our cat has left us for the great cattery in the sky and the experience of watching her go downhill to the point where we had to call the vet in was harrowing. As a result of this unremitting suffering I have had some extremely stormy encounters with God lately. But that`s O.K. He`d rather I told Him exactly what I think than just pretend everything was rosy in the garden. I have had times like this before. I call them wilderness experiences.
I remember commenting on Rons blog way back saying the discovery of the virus and subsequent tx was like a doorway into another world. He agreed. I don`t think anyone of us will ever be quite the same again.

Symptoms Part 3: Treatment Bites, Depression Sets In

2005-03-17T12:12:00.000Z

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What with life events the way they are for me at the moment, and also considering the time of year - still wet and miserable and desperately hoping for some real spring - I suppose it is no wonder that I am depressed.
However I do feel that the treatment is begining to bite in and the never ending bewildering array of side effects never seem to let up.
Tuesday night is shot night for me but there is no real pattern to predict how Wednesday will actually be. Last Wednesday was a stormer. I`d had a good morning and was just putting out the washing (yes, I am one of those new men you used to read about but never actually seemed to come across). I began to feel queasy and faint and as this is nothing unusual I went to sit down.
After awhile my heart rate was up to 88, my head was pounding and my breathing laboured.
My blood pressure was up 15 points the week previous and I had been getting minor nose bleeds as a result. So, add all this to that and I was concerned to say the least.
After lying down for an hour I managed to get my pulse down to 76 and was feeling a bit more comfortable.
When I sought advice from the doctor he said it was probably a "spike" in the release of inteferon which set off the adrenal glands. Seems logical to me. It`s the unpredictability that concerns me. A fellow hepper, Jonathan is out looking at the pyramids in Cairo this week. Such a venture would be utterly unthinkable for me.
You really have to work out your own tx for yourself, grabbing whatever help and insights you can get along the way.
I have cipramil, an SSRI anti depressant, already prescribed but don`t want to use it unless it`s vital. Interestingly, I was looking at a report from a recent NHS conference on Hepc and it is now virtually standard practice to prescribe an anti depressant to those on tx. There is a good reason for this as tx lowers the level of seretonin in the brain and so logically it is in order to give a serotonin booster to counteract this.
But, it means more side effects and SSRI`s can cause agitation something which I want to avoid.

I tried to get my ribavirin dose reduced. Because it is weight based and I am 13 st 6 I am on 1200mgs. I was fed up of the riba-hum, a sort of background throbbing like a ships engine which always seemed switched on. However, my nurse says she wants the maximum amount of chance for me to clear the virus and has told me to bite the bullet on that one.
Yes, Ma`am, I surely will. She was very good to me and put up with my growly and probably offensive mood. She will likely read this so I want to say, "Thanks. When this is over we`ll go out for a date."
I do recommend chamomile tea and valerian as herbal narcotics. Since I have been using them background riba-hum has reduced greatly.

Overcomer - Overwhelmed!!

2005-03-17T05:20:00.000Z

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Over two weeks without posting, something must be wrong.
Right!
Thanks to all who have emailed me with your concern. A great comfort.
I actually wrote a long post last Thursday, but when I went to publish it the system had crashed. Posting or making comments was impossible all night.
So not only was I fighting my own demons but also the gremlins in the machine.

No matter how much you shut down or organise your life, shit still happens.
People still die, and in tragic circumstances. Someone I know lost her 20 year old son last year. Suicide. Almost a year to the day her husband has just been killed in a road smash.
The funeral is today actually.
What do you say to such a person? If you are wise, nothing.
Huge faceless corporations send accusing letters and it takes you days to convince them they have made the mistake. Do they apologise. Of course not, they don`t have to, they are faceless, remember.
And juvenile delinquents are still with us, but more brazen than ever because they think you can`t get them. I ignore them the best I can, but I`m on ribavirin remember.
Also, my cat is dying. Twarly was a recue kitten only 4 months old when we took her. The vets diagnosed her as FIV positive, which is leukemia. She was only given a year to live, two at the very most. That was 11 years ago. Sarah gave her so much loving care along with the latest immune system boosters that she has not only survived but thrived.
Now, however, growths have begun forming and it is only a short time before she goes.
We have become very close during the illness and I will miss her more than I can say.

There are still more symptoms to report, but I will do that in a seperate post. I will keep my posts short in the future as losing all the work is such a blow.

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Louis Pasteur Never Shook Hands

2005-02-28T18:03:00.000Z

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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.

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Symptoms Part 2 The List

2005-02-26T19:12:00.000Z

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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.

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Symptoms Part 1: The First Day

2005-02-26T17:16:00.000Z

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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.

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Back To Not Normal

2005-02-24T19:10:00.001Z

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.

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A Great Day.

2005-02-23T22:39:00.000Z

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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.

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

2005-02-20T21:02:00.000Z

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?

2005-02-20T17:32:00.000Z

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.

More Introduction

2005-02-18T22:41:00.000Z

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.

Hi, my name is Paul and I am Hepc positive

2005-02-16T14:13:00.000Z

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.