Martins Blog




Saturday 25/06/2005 - Hot Stuff

At least now the temperature has eased a bit. It was getting a bit too much. My computer was complaining about the heat, and so was I. It was 29.7 degrees at my desk, and we were both reluctant to get on with any work. Even in a moving airstream provided by fans, which is about the only way either of us could tolerate it, it was for short periods only. It turns out that when I finally raised the enthusiasm to open up the computer, the air path out of the processor fan was just about choked solid with dust, and hence it was complaining. Ten seconds with a paint brush sorted it, and the computer can now tolerate the heat even if its owner can't. Choked or failed fans are common problems, and usually rear their ugly heads when the temperature goes up, so if your machine starts misbehaving when the temperature goes up, it is worth checking the fans. Could save a big bill! Favourite tip if you are doing it - leave the computer plugged into the mains but switched off at the mains socket. That way it is still earthed, and there is less chance of static electricity damage. Don't use a vacuum cleaner - just a dry paint brush! Amazing what you learn on blogs isn't it?!
I'm trying to come to an opinion as to whether the treatment affects heat tolerance or not. Since my original monotherapy, I found that getting the slightest bit overheated resulted in a small flood of sweat, and at the time put it down to a 'hangover' from the 'flu-like' side effects of treatment. I rather think now that it was actually the effects of the virus. I fully expected to be suffering severely in the recent hot spell, and it was nothing like as bad as I had imagined. The viral aches and pains have completely gone now, which is a bit surprising and very pleasing. I can get out of bed without any of the usual geriatric creaks, and the stiff shoulder and knee have completely gone. It begs the question how many HCV patients have been miss-diagnosed with rheumatism or arthritis. Up until a few days ago I was seriously considering this as a possibility myself, rather than attributing it to the virus.
The other evident bonus is in the 'concentration' stakes. I've had to write some assembler software this week, for the first time in about ten years. It is normally very heavy going, and I fully expected to struggle, but it just seemed to flow, and I was getting the level of concentration where you are completely unaware of your surroundings, and commensurate results. I am certain it it would have been a struggle pre-treatment, especially in this heat.
The heat has its advantages, in that the joys of being a grandparent are multiplied when one year old granddaughters are introduced to paddling pools. The favourite toy this week has been a two inch paintbrush, which she has been using to paint the patio with water from the pool. She hasn't quite worked out that the colour change isn't permanent, but doubtless it will come. There is a lot to be said for being a grandparent, in that you get many of the joys of parenthood, with the option to hand them back to mum when they get smelly or upset! I recommend it!

Sunday 19/06/2005 - Intellectual Crash?

Monday's injection (No 5) was marked by an event of some significance. My normal practice is to lay out all the bits in front of me at my computer desk. The usual stuff, interferon, cleaning swabs, sharps box etc. It is convenient, because I can lean back in my chair at the appropriate time, and my tummy 'target area' is easily accessible. I had just got the interferon out of the box when there was an almighty crash, and things went everywhere. It turned out that Collins English Dictionary had suffered an attack of excessive gravity, and descended from the bookshelf above to land in the middle of where I was preparing. No damage, fortunately, to anything other than my nerves, but the dictionary is now in a less easily reached spot, so if the spelling deteriorates, you know why.
This week marks the approach of my 'half way to EVR' point on Monday, and the end of Jonathan's treatment. I have a great respect for the man and the way he has battled through treatment. We have corresponded on a variety of subjects, argued the toss, as only two people who are both right can, and hopefully made a small contribution to the understanding and treatment of HCV. I really hope that he continues with his blog, as the world is made a better place by contributions from out-of-the-ordinary people, and I'm sure that he will not take offence if I describe him as that.
In fact we are all very lucky in many respects. The microcosm (where's that f******* dictionary gone?) of life that forms the blogging world, because it is selected at random from such a wide spectrum of personalities, throws up some wonderful characters. Although the HCV brings us together, it is really the people that make the blogs special.
Sooner or later I will bully Paulo de Feu into starting a blog, so that is a new one to watch out for. God help us all when he starts - No one will be safe! Paulo is the author of the well-respected dictionary of Hep C recently published on Ron's Forum. What about it Paulo?

Astute readers will notice that there has been a minor change of the site front page. I really needed to get the new 'Golden Rules' section up, and the 'Water Discussion document' has been temporarily pushed aside. You can still get it from the link in 'Living with Treatment'. The front page is due for a major re-vamp so it will spur me to get on with it. Keep watching!

Sunday 12/06/2005 - Small Milestone?

Well that's the first bottle of Ribavirin gone which must represent some sort of a milestone. You could call it a third of the way through stage one, the endpoint of which is EVR at 12 weeks. Sounds slightly better than week 4 out of 48 doesn't it? The next bottle is to hand, and is number two of twelve. I was trying to estimate the number of tablets and injections I have got through so far trying to fix this virus. At a rough estimate it comes to 70 self injects and 672 tablets to date. Hopefully I have another 44 injections to do, and 1848 tablets to swallow to finish this once and for all! I must do these numbers on the lottery!
I still think I am lucky being only on my third attempt. I was corresponding with a guy who is nearing the end of his fourth, so this may not be the end of it yet, but the trick is to stay positive and not 'go there'!
I must admit it is quite satisfying to be still avoiding the major side effects. The previous experience and the months of research are certainly paying big dividends. I look back at how I suffered during the first two treatments, mostly due to ignorance, and lack of basic information. It was all avoidable, if only someone had told me how. Between the last treatment and this, I think that I have read a fair percentage of everything that has ever been published on HCV and its treatment, studied basic pharmacokinetics and viral kinetics, and generally educated myself as much as it is practical for any lay man to do. It doesn't make me an expert, but I do class myself as an informed observer. The learning process continues, as does putting it into practice. The target, beside fixing the virus, is to go through treatment with the minimum grief, as a kind of model for how it can and should be done. So far it is working well.

Thursday 09/06/2005 - How not to do it!

Regular readers of blogs will probably have visited Jeremy's and have seen that he has just started treatment.(See Blogs Section). Today he published the list of stuff that he intends to take on treatment. I am horrified! The appropriate comment was made and, needless to say, deleted by Jeremy.
However, we are made of sterner stuff, and for those of you that missed it, it is reproduced here in full.

Sorry Jeremy, you are not going to like this. I suspect that the cocktail of poison that you are proposing to inflict on your body is likely to do you serious harm. I am talking about the vitamins etc not the drugs.
For a blindingly obvious start, the quantity of vitamin C is dangerous for a liver patient. Vit C increases iron absorption, and makes iron overload, which is a well-known side effect of treatment, considerably worse. This in itself demonstrates a lamentable lack of understanding of the effects of interferon/ribavirin treatment, and would lead me to question the competence of whoever gave you this advice, and hence the validity of the remainder. I take it that they also omitted to tell you that the vit C must not be taken with food as it makes iron absorption even worse?
You followed my advice about injections and got an easy ride on the second occasion, so take another tip from an old pro at the game and throw the supplements into the bin. Besides saving yourself a fiver a day you will emerge from treatment with an intact liver, which is unlikely at present. If you want confirmation, try asking whoever prescribed this lot for a written guarantee that it will cause no damage and will not reduce the effectiveness of your treatment. At least you will have someone to sue that way!

 Now those of you that read this blog regularly will know that I'm not exactly reticent, so I will stick my neck out and make a prediction. If Jeremy takes this cocktail he will have one hell of a rough time on treatment, will suffer haemolytic anaemia badly, and may well require a ribavirin dose reduction which will compromise his chances of a cure. I wouldn't wish it on him, but I can see it coming. Time will tell if I am right, I hope not!

While on the subject of supplements in general, it is wise to ask yourself a few questions before taking anything. The first one concerns basic safety. If you are in a situation where your liver is badly stressed due to treatment, and having to cope with the additional load of large quantities of dead platelets, is it wise to add anything else to the equation?
If any supplement was proven to be of any worth whatsoever wouldn't the drug manufacturers recommend it? How come they don't?
The effect of alcohol during treatment has only relatively recently been discovered, in that it 'switches off' the effects of interferon and causes a treatment gap that leads to treatment failure in many cases. Who is to say that one of the supplements does not do the same? Tests on individual supplements and their effects on treatment success have, in general, not been done, let alone for combinations of supplements.
There have been a multitude of tests carried out on just about every vitamin in the treatment of HCV, and without exception, none has been shown to have any beneficial effects, and some are harmful.
Herbal remedies and food supplements do not come under the same legislation as drugs. There is no requirement for safety or efficacy to be proved. Is it worth the risk?
The real danger area is iron. When red cells die, which happens with treatment, the liver mops up the iron from the cells and tends to get into an iron overload condition. This is why iron supplements are absolutely banned during treatment. This spills over into the area of vitamin C, which promotes the absorption of iron. If you must take vitamin C be aware that it should be taken on its own and well away from meal times. As an aside, it is pretty pointless trying to cut down on your iron intake by avoiding red meat, if you then boost it by taking vitamin C with food.

The type of anaemia that treatment produces, Haemolytic Anaemia, is often misunderstood. The term 'anaemia' suggests shortage of iron, but this is not the case here. There is usually plenty of iron available, and frequently too much. Haemolytic anaemia is where there is a shortage of red cells to carry oxygen around the body, rather than a shortage of the iron needed to produce them and the haemoglobin they use to carry oxygen. The red cells are destroyed by treatment, not shortage of iron. One of the functions of the liver is to pick up the iron from these red cells, and it has a massive quantity to cope with. Adding extra iron just increases the load on the liver, and may push it to the point where permanent damage occurs.
There is also some correlation between lower iron levels in the bloodstream and treatment success rates. If you raise your iron levels you could reduce your chances of a cure. You cannot expect to have the treatment success rate quoted in the manufacturer's trials apply to you if you move yourself out of the trial's conditions by changing your blood or liver chemistry. Low iron levels may well contribute to successful treatment.
It is also necessary to consider the effects of diet on ribavirin absorbtion. The fat content of the meal that you take your tablets with can make a 60% increase in the amount of ribavirin that your body absorbs. Equally a simple antacid tablet can decrease absorption by 15%. (It is all in the manufacturers data if you can be bothered to read it.) Don't forget that magnesium is an antacid, and will have this effect. (Jeremy is throwing 15% of his prescribed ribavirin dose down the drain by doing this! - a great start to treatment!) If you take other tablets what effect will they have? Ribavirin levels are critical to treatment success, particularly in the early stages. Do you know that what you are taking is not totally destroying the effect of your medication? What makes you certain when no trials have been done?
On top of all this is the fact that everything you take has side effects. When you are fit and healthy the level of intake at which these occur is high. When you are on treatment, anaemic, and have a depressed immune system, they start to become significant. How do you know whether it is the supplements or the treatment that is making you feel so bad? For instance, vitamin C is a diuretic, and will worsen the dehydration caused by ribavirin. This in turn will cause you to drink more, which accelerates the passage of interferon through your system reducing its effectiveness. It will also further upset your electrolyte balance and cause you to feel lousy.
You might bear in mind that in your normal diet your vitamin intake is distributed throughout your food. Some of the vitamins are quite agressive chemicals in themselves, and high local concentrations do not do your GI tract any good. They also affect your natural gut bacteria, as does ribavirin itself, and a great many stomach problems can be attributed to lack of beneficial gut bacteria. For this reason the one supplement that I will recommend is natural live yoghurt, or one of the products containing 'friendly bacteria'.
If you must take anything at all, be smart enough to get it cleared by your HCV specialist or hepatologist, NOT your GP. Most doctors have a limited knowledge of HCV treatment, and continue to prescribe medicines which are contraindicated, so their chances of getting it right over supplements are small. It is worth remembering that most nutritionists are qualified in that area only, and may have limited knowledge of HCV treatment. The vast majority do not have the letters MD after their names, which tends to indicate that their chances of getting it right are less than that of the average doctor, which is worrying. It is worth asking any nutritionist or herbalist that you deal with a few very basic questions about HCV treatment to which you already know the answers just as a confidence booster. For instance, 'What is the half-life of interferon?' If you don't get straight instant answers, they don't know enough to advise you. Pick another question in case they have read this!

When it all boils down to it, it is your body and you can stick what you like into it, but in my book the odds of making any improvement in your condition are slight, and the risks of destroying your treatment or doing permanent damage are real. The only safe course is no unauthorised supplements, and a proper balanced diet.


Tuesday 07/06/2005 - Figures Galore!

Firstly, the week one viral load is in, and at 77,648 it represents pretty much a 1 log (90%) drop in a week (from 774,511). Not bad, but I've very little to compare it against as the practice of doing week one viral loads is new. I suppose that you could theoretically project the drop forwards, in which case I will be 'undetectable' by week 7. I suspect that this is not a valid assumption! It does mean that I am unlikely to be a 'non-responder' as this big a drop rules that out.

The blood news from today's tests is in. 'T' is her usual ultra-efficient self! Beat this fellow bloggers, tests at 9.30, results emailed to me at 15.30! I bet doctors don't get that kind of service! The most worrying Hb figure has flattened out at 11.6, which is admittedly a further drop, but the rate of decline has slowed drastically and looks like levelling out. The drop is 0.5 compared to the previous weeks 2.7, so hopefully it will plateau around the 11 mark, which is comfortable in numeric terms, if not in terms of symptoms. The surprise is that the platelets have gone up from 199 to 262. This is very pleasing in that it means that lessening of the breathless incidents I have been experiencing is reflected in the figures. It sounds as if my body is adapting to treatment, which is just as well as I'm in this for the long haul. White cells are at 4.5 which is still inside the normal range, and I expect this to creep downwards, and neutrophils at 1.3 is about what I would expect and likely to drop further. Liver function tests are all normal. Generally it is all very satisfying, and looks good. Now if my luck will extend to a modest lottery win, (six figures will do,) all will be well!

Friday 03/06/2005 - Practice what you Preach!.

What a prat! I mean me! I harp on about paracetamol 'ad nauseam' and completely forget the basics myself. I had a fairly rough night last night, and on reflection, last Thursday wasn't very special either. Today the reason dawns on me. I completely forgot the second peak in the interferon curve, which for me falls on a Thursday night. I should have taken paracetamol at bedtime and had a decent nights sleep. I invariably do on injection nights, two hours post injection so the peak of the paracetamol hits the peak of the injection side effects, and I get a decent night's sleep. As the interferon builds up the second peak becomes more significant, and hence my rough night last night. B****y idiot! I should know better by now. Goes to show that you can't be wise all of the time.

Latest bloods are in and a bit concerning.
Hb 12.1 down from 14.8 (normal range 13.5-17.5 concern level 10.0)
Platelets 199 (normal range 150-400 concern level 150)
White cells 5.8 (normal range 4-11 concern level 1.5)
Neutrophils 2.2 (normal range 1.8-7.7 concern level 0.75)

Although there is nothing of any great significance yet, the drop in haemoglobin (Hb) is a bit steep, and prompted the question from 'T' that 'was I symptomatic, IE Breathless?' to which the answer is 'a bit, but nothing like I have been on previous treatments, and certainly nothing like enough to bother me'. I am hopeful that the cause is the fact that I have been studiously taking the ribavirin with fatty food, which boosts its absorption by up to 60%, so it has got into my system faster and in greater quantities than previously. Hopefully it will improve my chances of EVR, and I certainly don't want to be near the 'dose reduction' levels at this critical stage.
I have a little pet theory that the 'breathless' symptoms are due to the fact that the heart is used to beating x% faster for a given amount of exercise, and when your blood doesn't carry as much oxygen as usual, the x% is not enough and you get breathless. After a while the heart adjusts, and the problem goes away. The only times that it catches you out are during rapid changes in your work rate, when your heart is working from its programmed responses learnt in the past, rather than actual need. It means that if you increase your work rate gently you avoid all the problems, and this seems to fit what happens in practice.

Jonathan Colam comments:-

I read your comment on breathlessness, I would completely agree with the
heart thing. As you are aware I have exercised throughout treatment and my
observation has been that at first my breathing increases and I would seem
to be breathless, however as I get into the session my heart rate increases
and I the breathlessness stops. The only time I really notice it is when I
do a one off burst like climbing stairs and the like.


All the best
Jonathan


Thanks Jonathan! Great minds think alike!

Nice to see that the GOG Index has gone down well! (See following) Those brave enough should pass it on to their HCV nurses!

Wednesday 01/06/2005 - Medical Breakthrough - The GOG Index.

I am pleased to announce my latest contribution to medical science.
Due to the lack of a convenient and user-friendly scale to quantify the psychological effects of interferon/ribavirin treatment, I have developed the following.
For convenience this may be referred to as the 'Grumpy Old Git' or 'GOG' index. It operates on a scale of zero to ten, with benchmarks as follows.

0 - Elated. Something odd has happened. Possible lottery win, proposition from attractive virgin, or announcement of SVR. Otherwise very worrying.

1 - Cheerful. Having a good day. Last day of treatment, or announcement of EVR, otherwise slightly worrying. Treat as temporary insanity.

2 - Normal. Nothing out of the ordinary to report.

3 - A Bit Down. Not quite the normal person, but not shouted at the dog or kids (yet!)

4 - Quiet. A bit irritable and easily upset. Dog and kids wary. Approach with caution.

5 - Grumpy. Downright anti-social. Dog and kids reluctant to occupy same room. TV now a smouldering heap on the front lawn.

6 - Steaming Gently. Throws a wobbly at the slightest disturbance. Dog and kids reluctant to occupy same house. Postman approaches with trepidation. Computer has joined TV on front lawn.

7 - Withdrawn. Sullen, moody and depressed. Dog and kids leaving home. Postman refuses to call. Partner considering emigration. Neighbours calling estate agents.

8 - Depressed. Introspective and aggressive. Taxi drivers and busses refuse to drive up street. Police patrol nervously in threes.

9 - Suicidal. Seriously depressed. If there was a gun to hand a funeral would be needed. Offers of free ammunition from neighbours.

10 - Euthanasia required. Somebody find a gun quick!

Informed readers will quickly realise the benefits of the GOG index, in that the psychological state can now be accurately conveyed in a simple number, and no longer needs lengthy explanation, thus saving precious health resources. With this in mind, the numbers have been kept to ten to prevent doctors running out of fingers.

For general guidance it is suggested that driving be restricted to levels of GOG4 and below, except for supermarket trolleys which are, of course, exempt.
Dealing with petty officials is best reserved for periods between GOG4 and GOG6, when most satisfaction can be obtained.

I fully expect the index to be universally adopted forthwith as it represents a major medical breakthrough.


Sunday 29/05/2005 - So far so good.

Quite an uneventful week really. I'm still at the stage of waiting for the more serious side effects to appear as they are distinctly absent at present. The interferon (flu-like) effects have dropped to virtually zero, apart from injection night, and two paracetamol sits nicely on them. Having said that, I will probably have a hell of a time tomorrow night just for tempting fate! The ribavirin effects have started a bit, as I'm a bit breathless at times, and I get a swimmy head if I stand up suddenly occasionally. No big deal. The Boss says I'm a bit ratty, but thats normal as far as I'm concerned.
The really satisfying thing is that this time I am not getting the dreaded stomach problems that I've had in the past from ribavirin. It is evil stuff, and tastes absolutely foul. If you have the misfortune to belch and the taste comes up with the gas it is appalling. The Copegus tablets that I'm on this time are coated, so you don't get the taste while swallowing them which is a blessing. I'm making a point of taking them in the middle of a meal which mutes their aggressive effects, and making sure that there is a reasonable fat content in the food which improves their absorbtion by up to 60% and improves the chance of a cure. I think there is every reason to hope that this is one area where I won't get a problem this time, as I'm sure that at this stage last time around I was suffering badly.
Energy levels have been fairly good. I have to push myself a bit to get started, but once moving I can get quite a lot done. Quite a lot of the standard aches and pains that I have been living with for years seem to have abated a bit. I can only guess that this is due to dropping virus levels, and giving my liver a break. All in all everything is looking quite promising, but it is still very early days, and I don't really expect to get off this lightly. For the technically minded, my guess is that my drug levels are about two thirds of what they will be, and the earliest that it is practical to make a judgement on the severity of side effects is about 8 weeks. Thereafter drug levels are virtually constant, and it is just the cumulative effect that causes problems. We shall see!

Tuesday 24/05/2005 - Viral Load

At last I know. Viral load 774511. About 20 times less than I expected. Damn good news, as it does indicate that my chances of a cure are somewhat better than I expected. The load is in the middle of the 'low' category. Even the ALT looks better than expected. In November it was 63, and last week 55. Some improvement probably due to the absence of alcohol, but not much.
I owe 'T' a big thankyou. I sent her a email asking if she would let me know when the figures came in, and got a result in ten minutes. If only the rest of the world was that efficient...
Now if I can just get my Viral Load below 7,745.1 by 12 weeks all will be well. I'm going to enjoy cutting that last virus particle into tenths!

Monday 23/05/2005 - Two's company

The 'two' are the post-its on the wall, which are now keeping each other company. The original one was a bit lonely! Just done injection number two, having done the week one blood tests earlier. Its all been boringly routine so far. Very little in the way of side effects so far. A couple of sweaty nights, and one attack of the shivers is about all I can report, plus the usual post-injection metallic taste. I've got through eight paracetamol in total so far, including tonights two. No gastro effects at all, and few aches and pains which I get normally anyway and thats about it. A bit of injection site reaction - fifty pence size blotch appeared after a few days, but no big deal. I feel downright well, but it probably won't last! Mentally it has been normal, as after the last few days wrestling with a major computer problem, the thing is still in front of me and more-or-less behaving itself, and if the riba had really kicked in it would have been a miss-shapen lump in the street having been ejected from the upstairs window at high velocity.
Last week's boiler job turned out to be easy, but it was seriously hot in there. Twenty minute spells of work, punctuated by ten minute fag/cooling off breaks got it done in short order, and the customer is happy which is what counts! By the way, these are not small boilers! You might just squeeze one into a domestic garage, but only just, and their output is measured in tons of steam per hour! Makes a change from computers and delicate electronics.
Next week should hopefully bring news of my starting viral load, and I'm going to pester 'T' for ALT levels at treatment start compared to six months back. I'm curious to know what effect abstinence from alcohol for ten weeks has had.

Wednesday 19/05/2005 - All is well

Just a quick note to say that all is well. First injection fine. The usual sides a bit later, namely a two minute attack of the shakes. I find that these are usually set off by a sudden change of temperature, often caused by a quick trip to the loo at night. They are harmless and can be quite amusing in some respects as you have to sit down when you can't aim straight! Its quite comforting really, as it proves that what is in the vial is interferon and not just water!
The 'aches and pains' factor is up a bit but nothing drastic, and THE Boss says that I am making an electric blanket redundant so far as she is concerned. Two paracetamol at night is getting me a reasonable nights sleep at present, and the only reason I'm a bit irritable is that I'm being TOLD that I'm irritable when I'm not really!
Having had a chance to closely examine the syringes and needles supplied, I am distinctly unimpressed with the quality. Bearing in mind the price of the medicine you would think that they would spend a few cents and use top quality hardware. No such luck! No wonder there are so many reports of blunt and hooked needles. The quality is rubbish. I intend to examine the needles closely under magnification before they go anywhere near me.
Very quiet birthday, thanks for all the messages! Very much appreciated!

Monday 16/05/2005 - Rolling again!

Well I promised a mini-blog about today, so here goes. The serious stuff started at around 9 when I phoned my nurse, 'T', at the hospital. I'm damned if I can find the original appointment letter, and needed to confirm the time. T had been on holiday up to today. A thirty second conversation resulted in the appointment being shifted by mutual convenience to 40 minutes from then, and at ten I was discussing her holiday. By ten fifteen we had put the world to rights and I had collected a prescription for a month's worth of meds, blood test forms for now and the next two weeks, and instructions to re-appear in a month's time. Any problems can be sorted by phone. This has to rank among the quickest inductions for HCV treatment on record. Mind you, it is how it should be. T and I go back quite a while now, and understand each other well. Her time is much better spent with those who need it, rather than going through the motions with those that don't, namely yours truly! The next two hours were spent waiting in the queue for the professional vampires to take about ten blood samples, and waiting for the pharmacy to produce the meds. I can cheat a bit for the weekly blood tests, as I chatted up the lady with the needle, and found out when the queue is at its smallest. By this wonderful arrangement I can turn up for tests when it suits me, in other words when the queue is shortest.
I now have my first dose of ribavirin inside me and at around nine it will be joined by 180ug of interferon. Two paracetamol to chase it down at 11 and bed. Sod's law applies in spades as usual, in that I have an urgent job tomorrow morning. Did I mention my sideline is industrial steam boilers? A breakdown just when I didn't need it, and it is one of a pair so the boiler room will be hot as hell. What fun! Might as well get used to it as it is bound to happen again.
T was talking about her workload. Her clinics are running at 110% and it is only because she primarily deals with severe cases and re-treats like me that she can actually cope. She has over 100 re-treats on the books at present. The only slots that are becoming available are when someone finishes treatment, which means that the typical wait is six months. Not as bad as some parts of the country where it is up to a year. The bottle neck is clinic time, and not money. The NHS is going to have to find more resources to deal with HCV or it will be swamped.
I did some basic maths, and came to the conclusion that one damned good nurse like T can cope with about 100 patients per year going flat out and assuming good back up from other departments. It is a case of swimming against the tide, and if the detection rate climbs the system will break down.
On a different note, I noticed that next weeks blood tests include a second viral load test, so we will get to find out how much the count drops in a week. Should be interesting!

Sunday 15/05/2005 - Plastered!

Well I should be, as it is the last evening before D-Day, (or should I say T-Day?). In my case plastered applies to the kitchen walls and ceiling, and not to alcohol. I have at least got the kitchen more or less useable, and if the decorating side has to wait, then it has to wait. Nobody died from an undecorated kitchen! It has been a struggle, and one of those jobs where you uncover the bodges of previous generations, and end up ripping it out and doing it properly, which makes the job about five times as big. In this particular case, replacing the kitchen ceiling involved ripping all of it down, replacing and straightening the bodged timberwork, insulating it properly (none present), re-wiring it properly and re-boarding it. Then discovering the main wall was rotten along the bottom two feet because no damp proof membrane had beed fitted, and the same rip out, insulate and replace exercise had to be done there. I have used a small mountain of insulation, plasterboard, timber and screws and done it properly.
I hate bodges in all fields. I am absolutely convinced that in the case of most of the ones I come across it would have been quicker, easier and cheaper to do it right in the first place. They should drum the philosopy into kids, never mind tradesmen. Do it once, and do it right! Take a pride in what you do, and you will go far!
You can see why I wanted it out of the way before I started treatment.
One of my friends bought a large quantity of floor tiles to do his kitchen and utility room. He completed the utility room quite quickly as it was a priority job, and stacked the remaining tiles neatly in the corner of the kitchen. He arrived home from work one day to find a lit candle on the top of the tiles, and his missus singing them happy birthday. At that point he came to the conclusion it would be a good idea to tile the kitchen!

Have you come across the Norfolk expression - to mardle on? Well I suppose thats what I am doing - It means to tell a tale! In this case I suppose it closes a chapter on my pre-treatment life, and I now batten down the hatches for the next year (hopefully!). I must admit to feeling a bit of a fraud up to now, in that unless you are actually on treatment you seem to be only an 'associate member' of the club. As from tomorrow I'm fully paid up! Supplies are laid in and everything is ready. The post-it pad is to hand. I haven't mentioned this in blogging, but the plan is to attach a post-it to the wall in my study each time I do an injection. 48 should look quite impressive. At the end of treatment I take down and ceremoniously burn half of them every 12 days, as that is about the rate the ribavirin leaves your body. (24 on day 12, 12 on day 24, 6 on day 36, etc) I have a very strong mental image of taking them down and burning them! I look forward to it!

I must say a big thankyou to all the bloggers who have posted on forums and emailed me best wishes. Thanks gang, it is really appreciated! It makes an awful lot of difference!
I promise you at least a mini-blog tomorrow post injection! (or should it be a bloglet?) Thanks again!

Sunday 08/05/2005 - I'm So Glad

The graffiti artist who coined the immortal phrase 'Eric Clapton is God' got it about right, at least as far as driving a Fender Stratocaster is concerned. Friday night was the the experience of a lifetime. I can't recall a band ever walking on stage to a standing ovation, but that's what happened. They started around eight with 'I'm so glad' and finished at ten fifteen with 'Sunshine of your love'. No breaks, apart from a fifteen minute drum solo from Ginger Baker, who issued a classic lesson in how drums should be played. The critic who implied that he was 'past it' obviously couldn't get a ticket. If that's what being 'past it' is like, I'm looking forward to my turn.
Like a good wine, Cream have mellowed. They did not need to prove themselves as they did first time around, and they confidently re-trod the ground they broke many years ago reclaiming their rightful place in musical history with a masterful performance. Why Eric Clapton ever plays acoustic guitar defeats me. He is such a master on electric, it is a criminal offence to deprive the world of it. All in all it was a tremendous night. They had ten camera's running on all four nights, so when the DVD comes out in October it should be good! Small comfort to those of you who could not attend!

Other than Cream, it has been a busy week. D-day draws closer, and this was the last fling before I have to behave myself for 48 weeks (hopefully). It was also a pre-birthday treat for myself and the Boss, as our birthdays are both coming up shortly and will be very quiet affairs this year. Mine particularly, as two days into treatment is probably not the best time to celebrate. Of course this time next year could be a different matter! I've been trying desperately to get my DIY jobs somewhere near completion before treatment starts, as I know damn well it will be a struggle to get anything more than the absolute essentials done then. As Paul rightly says, don't take any baggage with you when you start treatment.

I was reading Ron's blog about HCV infected medical staff, and the ethics of compulsory testing. It struck me as being slightly ironic that the reaction that inevitably results from the discovery of an HCV infected medical worker never considers the source of that worker's infection. In a great many cases this is probably an infected patient. It might be interesting to consider the possibilities of insisting that all patients are tested for HCV and HIV prior to any surgical procedure for the protection of medical staff, or is this taking things too far?

The other subject up for debate in the household was that of 'blog sanitisation'. The process of keeping the worst of any symptoms and side effects out of a blog for fear of creating a false perspective, and inducing effects into others on treatment. In other words, you could make it worse for others by telling the whole truth. Having debated this at some length, the decision has been made. You get the lot! With the exception of my sex life, you are going to get all of it, and if you don't like it, don't read it! Part of the reason for blogging is its therapeutic effect, and anyone on treatment needs all the help they can get. Curtailing free expression is definitely out. You have been warned!

Sunday 01/05/2005 - With Deepest Sympathy

I regret to inform you that on Friday night I shall be thoroughly enjoying myself, and all the tickets are gone, so you can't join me! Shame! Mr. Eric Clapton and Cream are performing in the Albert Hall purely for my exclusive pleasure (and that of a few thousand others) and I've got tickets! Gloat! Gloat! I should like to say that I will be thinking of you poor souls who cannot attend, but I would be lying. I intend to make every effort to think of nothing else but EC and Cream! If you ask me very nicely next week I might tell you how good it was, but then again I might not!
So now we are into May, and the 'Glorious 16th' (to borrow a phrase) is imminent. Treatment start day! Two weeks of normality left, and then the switch to treatment status. Not that it is that bad, it is just a large adjustment. Forewarned and forearmed it holds few fears. The really interesting bit is going to be how much influence you can actually exert on the side effects with the benefit of experience. Having been there before, I wonder if the fact that I can look back and see how I was at the time will influence the course of things this time. Can you avoid the trigger factors that send you into a foul mood? Can you count to 20 rather than ten and avoid loosing your temper? Can you dismiss the great well of emotion that occasionally surges up as just being Riba-Rage? Can you switch it off? We shall see!
An awful lot of you will also see, so it seems. Last month this site received some 4400 'hits', which is very gratifying, and very humbling. I must admit that when I started I expected at most a few dozen. Thanks for your support. It is very much appreciated!
Talking of support, Ron Metcalfe has now got his Forum running, and it is great! Link to it from his Blog, my front page, or here. If you want a variety of views on a subject this is the best way on getting it. Well done Ron (and Ben!). This is a major milestone in Hep C treatment and understanding in the UK.
Congratulations also to the NHS Prescription Pricing Authority. I ordered my pre-payment certificate on the web last Sunday, and it arrived Wednesday. Easy and quick. Well done PPA! (Link under Bits & Pieces in Beginners Guide) Perhaps the PPA should launch a takeover bid for the rest of the NHS computing operations, as they seem to be able to get it right, unlike the rest!

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