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.

******************************************************************************

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

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”.

********************************************************************

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.

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:
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.