As promised here is my experience of the last 48 weeks. Remember I still have another 20 odd weeks to do but for this post I’m pretending I have finished. First off you need to know a little more about me, it may help you see through my “spin” if you know how my mind works so pull up a chair.

I don’t believe in God but do believe in miracles.

I believe that you can break the most complex of problems down into a series of bite sized simple problems.

I think if you trip over a kerb stone you should immeadiatly think to look where you are going rather than sue the person that laid it.

I have been in jail, in a mental hospital and in Las Vegas…Vegas was worse.

I have zero tolerence to whining.

My family is the most important thing in my life.

The reason the poor are poor is because they are stupid.

I don’t know anybody who is single and happy.

Politically I find it hard to fit a pidgeon hole but minarchist may be the closest.

My special talent/party trick is being able to “spot” Gay men, its wierd but I can tell if somebody is Gay from a distance of 500 yards even before they know they are Gay.

There is no money in Gay spotting.

I think that it is important that everybody sticks to the rules but those same rules do not apply to me.

My favourite film is Kes.

Chris Rock is the funnist person alive.

I live by the Golden Rule which means if I clip your heels with my supermarket trolly I will apologise, it also means if you glare at me after I apologise I will smack you straight in the mouth.

I was once banned from 3 supermarkets in my home town.

I own 4 ipods.

Some stats.

I’m early 40’s, Male, Hep C since 16 [IVDU of course], Genotype 1 and have Cirrhosis. I have had Hep B too.

So how was it for me?

Physically

For me and indeed the majority on treatment it has been tolerable. My bloods have remain strong throughout particulary my hemoglobin which only very briefly dipped under 12. Having said that the raw hemoglobin numbers don’t always tell the true story, its more to do with how far it falls and of course how fast. My liver Doc says that hemoglobin doesn’t become a big problem until you get very close to 10 and as always he is right. Having said that if your hemoglobin drops 3 or 4 points in a couple of weeks you will feel like all the life has been sucked out of your body. I think the average fall in hemoglobin for people on treatment in the first few weeks is about 3 points, that will smart a bit for a few days/weeks until your body adapts.

My worst problem was the insomnia in the first 12 weeks, I really didn’t sleep at all and this really did pile on the tiredness. In the end I had a 30 day course of sleeping tablets which in some way has solved the problem but looking back I think if I had prepared better I could have avoided them. I would have liked to avoid them because everytime I walked passed the kitchen cupboard where they were kept I heard them say “you are weak”, and they had a point.

The two days after injection day have always been the worst for me, I was and still am completely wiped out. It is not unusual for me to go to bed on Friday night and get up Monday morning.

Work wise in the first 12 weeks I did very little, since then virtually every day and its an area that has gotten easier as time has passed. I wouldn’t say I’m at 100% workwise but more than enough to do an excellent job, I will say though that if I fall behind I find it very hard to catch up, my reserve tank is pretty low.

Dry skin, dry mouth, aches and a bit of itching but nothing too bad. The ringing in my ears is just about tolerable.

Hair, well I may have a little rant about that later.

All in all not to bad, bear in mind that I’m not a fan of painkillers and have had less than 15 in the last 48 weeks. I look at it this way, if a couple of paracetomel makes pain go away it isn’t pain just minor discomfort.

On a scale of Brutal > Harsh > Tough I would rate the physical aspect of the 48 weeks as being in the bottom end of Tough.

Mentally

Now here is where it gets interesting

I have found the mental side of things much tougher than the physical, if you are not careful your mind can start to wander and there is no telling where it can go to. The key to preventing that is, imho, vigilance. I have needed to concentrate for almost every minuite of everyday for the whole 48 weeks, that my friends is very tiring. You don’t go mad overnight, its a series of small seemingly innocent steps which if you are not careful will lead to a place where its very hard to get back from.

There you are walking down the street when you spot a £5 note on the floor, you pick it up spend it on a lottery ticket and win £500. Six months later you are living in one room above a Latvian brothel covered in your own vomit whislt furiously masturbating to transsexual p0rn as “I love Lucy” re-runs play endlessly on the TV whose sound is broke. It is a rare person who gets to that stage and suddenly says “fcuk me I’ve gone mad”, its too late. The only way you could have stpped yourself going mad was not to pick up the £5 note and thats what I have spent 48 weeks concentrating on.

For me Riba rage hasn’t been an issue on treatment, I’ve been irritable but then I always have but have rarely lost my temper. I would say overall I’m in many ways calmer but think that may be because you lose a bit of confidence both in your mental and physical abilities. I have certainly beome “quieter”, more isolated, but much of that is because I need to concentrate harder, I need to conserve my brain power.

On my scale the metal issues hit somewhere around the lower end of harsh.

Now I hope that comes across as largely positive, it really hasn’t been all that bad to be honest, I’d do it all again in a heartbeat. If truth be told the treatment part of it isn’t even the majority, the diagnosis and then the wait to treat is at least 50% of the pain. The bad news about that is that those of you who “only” have to do 24 weeks won’t get away lightly, you will less but not much. From 24 weeks on its just been a bit of a grind.

They say that treatment can bring the strongest person to their knees and the weakest can flourish, that I’m afraid is bullshit. The people most at risk are those who are weak who think they are strong, if thats you expect a rough ride.

So thats it really, I’ve missed loads out but hopefully will catch up later.

no news is good news and I have no news

Everything is just fine, feeling well if very tired and don’t expect this to change much. I have just one injection left to hit the 48 week mark and from there its just a gentle coast downhill for another 24 weeks until treatment end. The only worry I have at the moment is that things are a little too good, that can make you lazy and sloppy, so I am trying to refocus a little. I’m not a person who needs external motivation for me it has to come from my own goal setting, however things generally come easy to me which can lead to complacency. In brief I feel I need to get a little more aggressive, a little nastier, than I have been of late. We shall see.

So time starved and tired is about the worst of it at the moment. Still things could be a lot worse, only by seeing how unlucky others are makes you realise how lucky you actually are. As an example imagine how unlucky Lou Gehrig was to die of Lou Gehrig’s disease, that must be a billion to one chance!

If I find the time I’ll try and do a review of the first 48 weeks of treatment next week, until then………

Luck is what you have left over after you give 100 percent.

- Langston Coleman

Keep the faith, kill the virus.

…but I managed to get a replacement in straight away.

She has gone to Portugal for a few days [yes that Portugal]. A little tip, don’t try and call anybody in Portugal when they have just knocked England out of the world cup.

I have a family friend round to help out a little which is nice as my eldest has some issues which means he needs 24/7 care and to be frank that combined with working full time and looking after the youngest is a little beyond me at this stage.

She is back next week, if of course she can stand the agony of being without my company for that long, unlikely I know but she will give it her best shot.

Apart from that all is good. While I don’t actally feel fit and strong I feel OK and more than capable of pushing on till next year. These last few weeks have been busier than usual at both work and home with a few “big” issues to address, mainly tax issues from the last financial year which is always both a massive pain and a huge time suck. At times like this I have to give a big thank you to a dear old friend of mine who hammered home the importance of getting your affairs in order before starting treatment. I did a decent job of that, haven’t even needed to see a bill or such like since starting treatment, don’t underestimate how important that is, it allows you to concentrate on treatment and gives you the brain power reserve to deal with any big issues should they arise.

So all in all not bad at all, I shall be shortly be returning to the hell that is deciding which senior school my 8 year old will be attending in 2 years. Thats my job though, thats what I do, make the big decisions on behalf of the family and most importantly must get them right every single time, there is no room for error.

So in celebration of that fact here is this weeks inspiration, with a sexist slant.

I spent my whole life trying not to be careless. Women and children can be careless. But not men.

- Don Corleone - The Godfather (1972)

Keep the faith, kill the virus.

My how time flies…..

Things have been very good of late, been feeling pretty good and working hard. I’m most pleased about the working hard, I’m not happy when I’m not, some old fashioned work ethic thing or as I like to think of it a sense of duty. The pattern of late seems to be working hard during Mon-Fri, around 60 hours or more, and then crashing for the weekend. As patterns go its about the best I can hope for.

I seem to have settled down since my week 36 negative PCR test, it was a strange mix of emotions. The best way to describe it is like I was running a race, came from nowhere to overtake the other runners and make it to the finish line first. As I crossed the line I heard the bell ring and realised I had another lap to run, that came as somewhat of a shock!

I’m happier now I have a finish date, March 2007, I can work towards that. I will see my consultant shortly to flesh out the details, the neg PCR test raised more questions than it answered and I would like to get everything nailed down so we all agree on how we move forward. My big concern is my hemoglobin continuing its downward drift over the next 9 moths or so giving the danger of a dose reduction. That won’t fly with me, all I’m aiming for is to finish my treatment at 100% of dose, SVR is just a bonus so I am non-negociatable on dose reduction. It seems that the NHS do not offer EPO “blood boosters” to heppers but as I explained to all my medical team…..I’m special. Repeat after me “the normal rules do not apply to HepCBoy”.

Your inspiration for this week…..

Duty is the most sublime word in our language. Do your duty in all things. You cannot do more. You should never wish to do less.

- Robert E. Lee

Keep the faith, kill the virus.

The young Ali stands over the fallen Sonny Liston shouting “get up, get up”. I’ve kept that picture in my mind ever since starting treatment, I even have a big canvas of it in the gym to remind me. Its not the winning that I enjoy, its the fighting and following my 36 week PCR negative result it looks like the fight will continue until next March.

More to follow because, just between us, I’m a little emotional.

…but susan400 is a lot tougher than me, or you for that matter.

My first treatment was in 1997. I’ve been trying various treatments with periodic breaks off since then. Somewhere on here listed is all the various treatments that I’ve tried over the years. But, for the newbies who don’t know: I’ve tried, Intron-A/Riba (1st treatment for 48 wks)
Infergen 9mcg 3 x a week (for 6 mon. 2nd treatment)
Maintenance dosing with regular Intron-A (3rd treatment)
Peg-Intron/Riba (48 wks) (4th treatment)

Pegasys (2 months and then switched back to Peg-Intron and Riba. Also, Zadaxin was used at the same time. (5th treatment)

Double dosing with Intron-A and Peg-Intron combined and Riba (6th treatment)

Infergen/Actimmune/Riba (for 8 mon.) (7th treatment)

And now, this treatment with Infergen and high dose Riba (8 pills a day). (8th treatment)

So just how tough is susan400?

When the Boogeyman goes to sleep every night, he checks his closet for susan400.

When susan400 falls in water, susan400 doesn’t get wet. Water gets susan400.

Some people wear Superman pajamas. Superman wears susan400 pajamas.

[ shamelessly plundered from www.chucknorrisfacts.com ]

Read more at medhelp

The answer from your Doctor may be 50/50 with a leaning towards Pegasys, I honestly think they are just better at marketing than Peg-intron. This study and a few others suggests that at least for genotype 1 Peg-intron is “better”.

Overall, genotype 1 patients treated with Peg-Intron were more likely to achieve sustained virological response 24 weeks after completing therapy than those receiving Pegasys (49% vs. 36%; OR 1.62, 95% CI 1.10-2.39; P = 0.017). The difference in SVR rates between the two types of peginterferon was not significant among patients with genotype 2 or 3.

http://www.hivandhepatitis.com/2006icr/ddw/docs/053006_b.html

I’ve not been at my best the last couple of weeks. Really haven’t felt well at all, like an extra layer of sickness that sat on top of the treatment and has made me very very tired. It seems it may have been a viral infection, both the kids had it and the GP said it is doing the rounds at the moment. While I was at the Dr’s with the kids I had him give me a quick once over and nothing to worry about, I was a bit concerned that I had a chest infection but he gave me the all clear. That “extra layer” seemed to just lift a few days ago and I feel so much better, almost born again!

Apart from that not a lot to report, at this stage of treatment the one emotion that is paramount is boredom, its just a grind. I think thats partly to do with not having a finish date instead I’m just treading water but hopefully my 36 week PCR will give a clue as to the finish date. I’m not bothered when the finish date is, I could do this forever, but I’m at the stage when I would like to know.

A few positives have emerged from the last couple of weeks. The main one being that I have had the time to ponder, research and come to a conclusion on one of the fundamental questions of life. My conclusion is that as suspected the Godfather 2 is a better film than Godfather 1.

Another positive has been that in a moment of reflection, not something I would recommend on treatment but I was weak, I realised just how happy I am with my life. I have a great family, great friends and all the other boxes are ticked too. I’m tempted to say how lucky I am but luck has nothing to do with it, its about setting high standards for yourself and expecting the same from others. If you do that one day you wake up, realise the shit has hit the fan and notice that everybody in your life steps towards you, not away.

So thats that, back to fighting the Dragon. Well its not really, I think its a terrible analogy and gives a false impression of what treatment is like. I think it comes from heppers wanting to portray themselves as hero’s, that sticks in my throat somewhat but I’ll save that for another day. I think treatment is more like a wildebeest fighting off a pack of hyenas or my favorite analogy, wall tennis. I’m sure most of you know what wall tennis is, just hitting a ball against a wall, its a game that really has no end you can’t ever beat the wall. Now as a kid I used to play a lot of wall tennis and the main thing I remember is that there wasn’t a single time when I didn’t think that I would win, crazy I know but thats me!

Your inspiration for this week….

If you are unafraid of the truth then lies cannot hurt you.

And remember, keep the faith, kill the virus.

BTW, my hair seems to be getting a bit thicker, here is a picture of me from last week.

All quiet on the western front…..

Not a lot to report really as we head towards injection 34. I seem to have settled down pretty well after switching Interferons although it has to be said I am generally feeling very tired. Having said that its the sort of tiredness that you can take a deep breath, clench your fists and just push through.

Whilst on the subject of switching Interferons I know a few people are interested in the medical rational behind it…..truth is there isn’t one. The facts of the matter are that SVR rates for people who retreat are in the region of 10%, or to put it another way a 90% failure rate. The reason I switched was really to get it out the way, if I hadn’t I know I would have been pushing my consultant to retreat with no help from facts. I’ve never been one to let facts get in the way of what I want but I feel it would have led to some conflict with my consultant, I want to avoid that at this stage as I feel that I need to keep my powder dry, I have a strong suspicion that greater battles lie ahead for me and need to use my “get out of jail free” cards wisely.

So not a lot else to say apart from I have another PCR in 3 weeks time, its about my last chance to show undetectable, if not then it looks like Round 1 may just go to the virus. To be frank I have had no expectation of winning this round, I have just concentrated on doing my 48 weeks with 100% compliance, but I wouldn’t mind just one undetectable just for the feeling of putting the virus on its arse just once. Still a lot can happen in a few weeks in this game and I’m 100% focused on doing everything I can to try and help my body towards the undetectable goal.

In other news my 8 year old Daughter called me “sexist” the other day which to be honest I found devastating. It makes you question your whole parenting skill set to think that it would take your child 8 years to work that simple truth out.

This weeks inspiration…..

When I hear somebody sigh that Life is hard, I am always tempted to ask, Compared to what?

-Sydney J. Harris

Keep the faith, kill the virus.

A much better week than last week, the body really is an amazing machine and has adapted to the new Pegintron very quickly. I seem to be more tired than usual, partly I think its because I am still catching up on some rest from last week and partly that I have upped my fitness routine a lot.

For those of you interested I am now lifting weights 5 times a week, Mon-Fri, and have stepped up in weight a fair bit. I’m probably pushing at the boundaries of what constitutes moderate exercise but am already feeling better, remember go hard, go heavy or go home Still working aerobically 4-5 times a week, mainly the bike but also a little boxing, which gives me a little over an hour a day of exercise.

Worked everyday this week if somewhat off my optimum level but to be honest that still beats 99.9% of most peoples best efforts

Only my third injection of the new juice [pegintron] so its a little early to draw any real comparisons with the Pegasys but early thoughts are that it seems a little smoother, less harsh than the Pegasys.

Apart from that nothing much to report, it is [as an old friend also on treatment said] a bit of a grind and at week 31 a little boring. Maybe something exciting will happen in the next few weeks. On that thought if you could all promise not to let Kate Moss know about the weight training, as soon as she hears about my pecs and amazing shoulder definition she will be begging me to have her back. I have enough on my plate as it is and she is somewhat high maintenance.

This weeks inspiration…..

“That all you got, George?”

What Ali whispered into George Foreman’s ear in a late round clinch during the Rumble in the Jungle.

Keep the faith, kill the virus.