New Kid On The Block

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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?

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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

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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

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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

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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

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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??

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

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

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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

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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

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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!!

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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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