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

Location: United Kingdom

Saturday, March 31, 2012

End Stage Liver Disease

This is a copy of a letter I wrote to my doctor a few weeks ago.
Names have been withheld to protect the guilty.

Dear Dr *****

Well, this looks like the final challenge. I went for a fibroscan on Monday February 20th 2012. This is a new toy the hospital got for Christmas. As you know it replaces the liver biopsy with a non invasive examination of the liver.
It was a big occasion, Dr ***** was there along with my nurse and two staff nurses who were being trained how to use the £90,000 piece of kit..
My last biopsy was in 2004 and it showed stage 1 liver disease. Because my blood results have been so good and I have been living righteously, (no alcohol, low fat diet and plenty of fruit) we expected it to be still stage one or perhaps stage 2.
Everyone was shocked speechless when it showed stage F4 – end term liver disease. My nurse showed me the scale they use and I was right at the far end, with no further to go.
Dr ***** was stunned and just looked at the floor, the two nurses managed weak sympathetic smiles.
The scene is indelibly printed on my mind.
“How long have I got”, I asked my nurse.
“We don’t know, we have never dealt with this before”.

I’m so glad I did all that research years ago when I was on the chemo treatment, because I do know. When you have had the virus for over 30 years and it begins to move as virulently as this you’ve got three years. That’s provided it doesn’t turn cancerous in which case its six months unless treated successfully.
Of course we don’t know how long the liver has been at this stage already.
I am to be monitored closely but no treatment or advice was offered. New chemo treatments are on the horizon but I’ve suffered enough on them to know I will never try them again. It would be another year of hell for no appreciable gain. It just isn’t worth it.
I am coming to the opinion that the combination therapy treatment, if it fails, weakens the whole system and leaves you less able to fight the virus. It is a well documented fact that if the treatment fails the virus comes back with a vengeance, a sort of rebound effect.

I made an appointment straight away to see you.
The reason I am contacting you now is because at the moment I am being dealt with by the gastroenterology dept.
They have made it quite clear that I am not going to get any extra help from their quarter. It was a case of ;
“You have got end stage liver disease. We don’t know how long you have got – but try not to worry about it. See you in 3 months at your next scheduled appointment”.

In view of this I would like you to arrange an appointment with a heptologist who specialises in HepC. There aren’t many. I need to have my research confirmed so I can make informed choices about my future, such as it is.
Tempus fugit and I would like to have data I can rely on.
It’s been an emotionally testing ten days but I am trying to come to terms with my circumstances. I intend to spend my time left as constructively as I can given the severe limitations the virus puts on me.
And take some time to smell the roses.

So there it is. Only 6 years ago I was at stage one liver disease. Now I have jumped dramatically from stage 1 to stage 4. There is no stage 5. This is end stage liver disease.
I am 57 in 4 weeks time. I intend to enjoy it as there are few birthdays left for me.

Help!!?? Once more, like so many of us, I am faced with a mountain of ignorance. I am tired of asking questions because I am not getting any answers.
So any help or advice would be very, very welcome.
Please leave a comment or email me.
Also, do you see anything wrong with the above picture I have painted? Comments please.

There will be more posts to come, many more. If I can flag up warnings for others my last days will not be in vain.
I have over 2,000 profile reads for this blog. It gets read. So let’s help those that are in the fight.


Friday, January 25, 2008

Trammy Dodger


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.

Wednesday, June 28, 2006

TX May Fail You


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.


Friday, June 23, 2006

Final Tests - Last Post


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

Saturday, June 17, 2006

Relapses And Red Flags


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”.


Friday, June 09, 2006

Play Reaction And Other Media Stuff


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.

Sunday, June 04, 2006

Welcome BBC Pilgrims

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:
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.

Sunday, May 28, 2006

BBC Play And Helpful Pill


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.

Thursday, May 18, 2006

Chronic Fatigue Syndrome


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.

Wednesday, May 03, 2006

Birthday - 23 Weeks Post TX

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.


Wednesday, April 19, 2006

Poetry Therapy

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?


Tuesday, April 04, 2006

Moving On

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.


Tuesday, January 17, 2006

TX Aftershock


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”.

Saturday, January 14, 2006

Ten Weeks Post TX


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.


Friday, January 13, 2006



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.