Changes

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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

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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

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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

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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

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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

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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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