Martins Blog



Saturday 29/04/2006 - Bonfire Night?

I've got 24 PostIts in front of me awaiting cremation! Very pleased that half the riba is now gone!
Out fishing with the 'Boss' today. Nice to loaf about on the beach for most of a very pleasant day. It did actually hail for about a minute, but cleared to warm sunshine for the rest of the day. We even caught a few fish. The Boss stopped counting at five all! Very diplomatic, I thought!
Back home to lots of stuff on the forum and some emails. The forum seems to go through phases where everybody gets a bit wound up over 'who said what to who', and it has just emerged from one of these. It is bound to happen from time to time as we are talking about some fairly stressed people with nasty chemicals in their bloodstreams. Things are bound to flare occasionally, and it seems to take a firm hand from Ron to get things back in focus. Administrators of forums are all-powerfull, but armed only with fairly blunt weapons, and the sort of action that they have to take in these sort of circumstances is bound to impact on some who were not necessarity troublemakers. It falls to a small circle of contacts to support those who need it, rather than the full forum. Another small burden, but unavoidable.
In case anyone thinks I'm being critical, let me make it clear that I'm not! I might have retained one name, but otherwise I would have done the same.
All this is very pertinent as the Boss is now a moderator on the forum. That will sort them out. She will sort them out! She is not the sort of woman you mess with! Only joking of course, but I do think that she will be very good at it, and initial reactions from just about everyone have been favourable. I'm staying at arms-length as far as moderating is concerned, and staying neutral. Needless to say, I will have to be particularly good, as other offenders can get away from the moderator, but I can't!

Slightly ironic note from Thursday. Of all things I had to go to my GP for a medical. This is just routine for work, and on the basis that you don't exactly need the physical capabilities of Superman to drive a PC or a soldering iron, it holds few worries. Great satisfaction when the answer to the 'days off work due to sickness during last two years' was ZERO! I took prints of my bloodwork to date, and test results for the doc's files, and a very useful email stating that I had now completed treatment, was PCR negative, and my liver bloodwork was now normal. We will see what the result is like! As part of the routine he looked at the skin patches, which are rapidly healing now, and agreed with my guess that they were fungal. He too would have gone for Canasten cream as the favoured drug alternative is questionable with liver cases. We chatted briefly about Hep C, and might arrange a proper session where I can talk to the whole practice, and possibly some students as well.
As proof that he did actually do the job, he found that my ears need a clean out, and I have nitrites in my urine, which is probably due to some minor bug. Sample sent to hospital for report. Interesting thought that this is one area that is vulnerable during depressed immune system times, and it might be worth keeping an eye on during treatment. Maybe urine tests should be added to routine blood tests? Might be a better idea to give patients some of the test strips and let them check their own.


Wednesday 26/04/2006 - Post TX + a bit?

The FaceIt day in Cambridge wasn't actually too bad. Glorious weather, but very tiring. A few hours handing out leaflets may have helped a little, and it does show willing. Too near to treatment end to be able to get seriously active, as I know if I over-do it these days I pay the price. Very impressed by Richard's stamina and indefatigable sense of humour. He and Karen were stars!
It still gets to me how poor the quality of information is in the FaceIt leaflets. I'm considering a few ideas, so watch this space!
Time for a recovery progress report. Very good so far sums it up. No rages, and the sensation of growing pressure that often precedes them is absent. The skin patches on my ears are healing rapidly, so it looks as if the immune system is starting to regenerate. Not complete healing yet, but say around 80%. I don't have to treat them twice daily any more! Energy levels are pretty good, and I'm sleeping well. Post-It burning session coming up soon, as half of the ribavirin will be gone in the next day or so. Time flies when you are having fun!


Friday 21/04/2006 - Post TX + 0?

I'm now in the interesting position of being wound up for a serious riba-rant, without the chemicals to do the job! Two weeks ago Munroe Forster who run the FaceIt campaign did a presentation at the NHCN meeting. On being tackled about why the map of where they had run FaceIt days so far excluded East Anglia they stated that they hoped to have good news on that front in the near future. Sure enough, I get an email from a friend on Tuesday saying that Cambridge was coming up. Next day there is a phone call. The Cambridge event is Friday and Saturday. Will I be able to make it? 48 hours notice! All sorts of phrases come to mind, but the ability to organise a booze-up in a brewery is fairly close to the top. Surely they can't expect people to turn out at the drop of a hat?! Oh well! I can make the Saturday thing, so hopefully I'll see you there!

It has been a busy Hep C week already, with a trip to the BBC in London yesterday evening to discuss a potential radio program. Arrived home at half past midnight, cream crackered! Nice to chat to a few others who I can now put faces to. Funny how you can class people who you have never met as friends, but having shared treatment experience actually connects you to people. Only the image is novel when you meet - the person is familiar. I suppose that blind people must operate like this all the time, with no concept of what their friends look like. Interesting!
Johnathan Colam (and partner Paul) were there. He looks tremendous! I am sickened to say that he looks better than the photo on his blog, and that is saying something! In fact it was quite a clan meeting as Ron, Wendy, Overcomer, and another temporarily annonymous blogger were all there. Very impressed by the writer lined up by the BBC for the project. Could be good!
The BBC did manage to blot its copybook somewhat this morning. The short item on the local TV news this morning announcing the FaceIt thing in Cambridge was about as bad as anything I have seen yet. I caught it twice, and the repeat was worse. This time the newsreader stumbled on the figures and managed to omit the word 'thousand'. We then only had 200 cases of Hep C in the country. Apart from the fact that the intended figure of 200,000 is hopelessly out of date and should be at least 400,000, they managed to state that there is no cure! Wonderful! People are going to be really keen to get tested and treated if you wrongly tell them there is no cure! I had to go to work, steaming gently, but the 'Boss' got on the phone and sorted it out. It is very worrying to think that if the best professionals can get it this wrong, what hope has the man in the street?
On that basis, perhaps standing around at the FaceIt events handing out leaflets and chatting to people has something to be said for it.!
Just in, latest bloods from Tuesday's tests (Emailed by 'T' on Wednesday!). Last month's in brackets as usual. I'm not sure if 'T' plans ordinary blood tests with the 8 week and 6 month tests, so these might be the last!

White cell count 2.9 (3.4)
Neutrophils 1.0 (1.2)
Hb 11.4 (11.1)
Platelets 228 (232)
ALT - still normal!

All pretty normal for 'on-treatment', but but I'm looking forward to them being normal for normal!

Sunday 16/04/2006 - Easter Sunday

Last tablets this morning. I worked it out at 2016. I should be rattling after that many! Somewhat 'flat' today as it should be momentous, and isn't. I was quite prepared for the start of the physical changes. From today I start feeling better (we hope!), and although today is no different in treatment terms, and I'm fairly interferon-edgy, it should be for the last time as this is the final peak. Levels start to drop from here. From Wednesday we go into new territory, as up to now the levels would be boosted by the injection, but not now! In interferon terms, it is like winding the clock back to around week six, and then continuing to wind backwards at double speed. Just about all the interferon is gone in three weeks from then. I'm hoping that the mental side effects will ease fairly quickly. They are the ones that get to you, or would if you let them. It is one battle that I will be happy to set aside.
Mind you, I'm not cured yet! I still have to face the possibility that the virus will return. Geno 1 is tough stuff, and doesn't give up easily. It is on a loosing battle with me, because I'm going to win in the end. If it wants another go, then I'm up for it. I might have to wait for VX950 or struggle to get some Infergen, but if it is possible I will be there. Treatment holds no fears now, as I have beaten it, and so can anyone else.

Anyway, I haven't shown you any photo's for a while!

The only 'Lady' in my household - quite bored with the whole thing!


Granddaughter #1 Being taught to be a bad driver from an early age!


What 48 postits on a study wall look like - a sight for sore eyes!

Make the most of it - they are doomed! Half go every 12 days from today as the ribavirin clears!


Wednesday 12/04/2006 - Last Jab

Well, the final dose is out of the fridge, and inside me! No, the hand did not shake, much to my surprise. It has been a frustrating evening, as I've finally got the time together to 'write up' the weekend's NHCN meeting, and the b****y computer crashes and looses my evenings efforts. Needless to say, I'm now saving this every other sentence! Oh well, it is always quicker the second time.
I suppose that I should be leaping around celebrating, but I can't raise the enthusiasm yet. There was a certain degree of satisfaction in snapping shut permanently the lid of the sharps box. The tupperware box that has lived in the chill draw of the fridge for the last 48 weeks is in front of me, empty and forlorn. The final post-it note is on the wall, and I'm waiting for the final peaks of interferon side effects to run their inevitable course. By the end of the weekend most of them will have passed, and the final riba goes then, so with any luck things should get easier from there on. End-of-treatment visit to see 'T' on Tuesday.
Lots of moral support and congratulations in advance. Thanks to everyone! Visit and card from favourite grandaughter who brought parents along just in case.
I suppose I should wax lyrical and say all the things that I have been planning to say, but they all seem strangely irrelevant right now. I'll content myself with a sort of 'statement of intent'. I plan to be around for a while. For a start, there have been precious few properly documented and blogged recoveries from treatment, and that is the first target. It is going to be about nine weeks until I get some sort of test result to see if the last 48 weeks have worked. I'm fairly sure that they have, as the virus symptoms have gone this time, unlike previous treatments. The test result will be about 95% reliable if it is negative, so fingers crossed. I still feel that I have a lot to battle for in terms of fighting the virus, and hopefully having beaten it on a personal basis, I will have that much more energy to battle for others. There is a long way still to go!

Monday 10/04/2006 - NHCN Recovery

Well, it was a very busy and quite tiring weekend, and I'm still recovering. The Boss and I went to the National Hepatitis C Network Meeting in Luton. Obviously the rest of the world had got to hear, and they attempted to stop us by closing the roads and arranging massive traffic jams.

Got to this point twice so far and the computer crashed, so this blog entry gets a 'TO BE CONTINUED' sticker until I've done the week 48 one!

Computer behaving now, fingers crossed, so lets continue! I bit difficult as the enforced change of priority has left the subject a little cold now. I'm going to be lazy to some extent and get you to read Ron and Nicks blogs for the main part of this partly because I would just be repeating their words somewhat less eloquently. A little cheeky maybe, but I think I can indulge a little in the circumstances!
The meeting was certainly a success. Charles Gore of the Hepatitis C Trust got us off to a good start. The man continues to astound me! The Trust is going from strength to strength but, despite expansion, struggles under the demand. The advocacy team now has Julian and Adam on board and they are very busy. It is very evident that the NHCN is solidly behind the Trust. There should be future possibilities for cooperation, and the NHCN has a little more freedom of action being somewhat less 'official'.
Chris Duncan of Munroe Forster, the agency that run the FaceIt campaign had somewhat of a rougher ride. I did take him to task somewhat for producing leaflets that were damn nigh impossible to open. I hope I didn't overdo it! It was a bit riba stimulated, but I was determined to at least make the point that all was not 'sweetness and light'! He also took a fair amount of criticism from the conference over the lack of measured performance indicators of the campaign.
We were treated to a talk from Janet and Lynette, part of the treatment team from Ipswich. Their approach to HCV treatment certainly has a lot going for it, and certainly impressed the conference who were spellbound for much of the presentation.
Most of the rest of the day was taken up with NHCN admin, the sort of thing that cannot be avoided, but gets results in the long run.
Like most of these functions, the bulk of the more important work is done in the background (or the bar!). It is also useful to have the attentions of people like drug company reps and support group people, and an awful lot of serious organising gets done at these meetings. All in all, very informative, and very productive.

Wednessday 05/04/2006 - Fat Lady's Overture

She is warming up, in fact both the proverbial Fat Lady and the last of my interferon, just out of the fridge, are! Just realised that I was smiling as I looked in the interferon box tonight. It is a long while since I looked at a dose of interferon and smiled. About 47 weeks I think! Two left, and down to one by the end of the evening. It will have to stay lonely in the fridge for another week, but what the hell! Anyway, we formally start week 47 tonight.
All pretty good news, but what has really gladdened my heart is the word from Eddie in Germany. A switch of interferon has got him undetectable status and a decent chance of a cure. It makes my blood boil when the medical profession are so keen to write off any cases that do not respond in the conventional way. They seem to be incapable, with few exceptions, of actually working out what is happening in non-responding or relapsing patients. The lesson we can learn from Eddie is that if you are persistent and have a reasonable doctor there should be no case that is beyond treatment, or at least very few indeed.
I suppose that I am living proof that until you have been treated at least three times there is still plenty of scope left, and I have heard of at least one guy who got a result on the fourth attempt. The big area that most miss is the effects of interferon changes. It is a whole area where very little work has been done, and what few studies there have been have all come back with promising results and a recommendation for more research which doesn't happen.
The area which deserves a bit more attention is where viral load drops at treatment start, but not sufficiently to indicate any serious chance of success. I.e. the classic 'failure to make EVR or 2 log drop.' Now by conventional thinking these patients should stop treatment as they will get no response. By my thinking they should switch to a different interferon immediately and monitor the viral load. I suspect that what happens is that the original interferon kills off those virus particles which are susceptible, and if there happens to be some that are resistant, they multiply to take up the vacuum. The result is an increasing viral load and no chance of a cure. If, however, you then switch interferon, and the different type hits the resistant virus, the virus levels can be brought down before the virus can mutate back, and eradication is possible. The same thinking is possible in 'breakthrough' cases where viral load goes up late in treatment. You can make a very good case for the 'switch' strategy. Firstly, the patient is pre-loaded with a fully saturated dose of ribavirin, so that saves eight weeks treatment getting to that point. Secondly, one month's treatment is all it takes to find out the chances of it working which is both kind to the patient and the budget. My contention is that it stands a better chance than any ordinary approach, and costs next to nothing to try. Lets face it, a full course of treatment was budgeted to start with. If there is any possibility of a failing patient being re-treated in the future, it is a lot better to try it now and save the need for a second drug build up, to say nothing of the deterioration of the liver between courses.

Thursday 30/03/2006 - A Nice Pair?

To borrow a phrase from Pink Floyd. Having done number 46 yesterday, the remaining pair are skulking in the fridge awaiting their turn. It still seems one hell of a long time to go.
I think that one of the things that gets to you during treatment is the inability to indulge in a therapeutic 'blow - out'. I'm not suggesting that this sort of thing should happen on a regular basis, but just once in a while it would be nice to go out and get rat-arsed just to relieve the pressure. I suppose that over the decades you get used to the type of lifestyle where you can use alcohol or whatever as a therapeutic substance, and treatment leading to the enforced puritanical lifestyle that it does, leaves little in the way of an outlet available in that direction. It is quite possible to see why quite a few find the later stages of treatment a bit of a struggle, as the accumulated frustrations of a year's sobriety are fairly fierce. I can safely confirm that a year without any alcohol or drug input other that prescribed ones has not moved me towards signing up for permanent abstinence (sighs from Chancellor of the Exchequer). I've got thirteen days to work out how I'm going to play it. I suspect that once abstinence is purely voluntary the pressure will reduce, but I may be tempted to the extent of one small beer just to prove the point. On the other hand, strategically it would be better to wait until at least eight weeks post-treatment, and ideally six months after. How close to that I get remains to be seen!

Thursday 23/03/2006 - Three Left

Sticker 45 is now glaring at me from the study wall. Three more to go, and no way of speeding up the process. It is nearly as frustrating as waiting to start. Not quite, but not far off it.
End-of-treatment and eight-week-after appointments have all been sorted out with 'T', so it is just waiting time left now.
Doesn't stop the world turning and conspiring to make life difficult as usual! I got this far into a blog on Thursday, and ran out of inspiration and things to say. I'm now full of things to say, and lacking energy having somewhat over done it today. (Saturday).
Having got my car sorted out, it is now the turn of the Boss's. It was just a minor job of sorting out a loose wing mirror until the brakes more-or-less died. A ten second look at the area where a vacuum servo would normally be fitted caused a change of plan when an electric one appeared, and a massive hunt for the relevant fuses revealed that they were buried under the passenger glove compartment on the side of the heater, but were intact anyway. Further more critical examination revealed that hydraulic brakes work better with hydraulic fluid in them, and that sorted problem number one!
Wing mirrors are easy! Oh yeah? Small expedition to local scrapyard, followed by long delay waiting for man to appear to open the premises. Sat watching two deer wander around the field opposite, and around twenty hares going completely crazy in the sunshine. Mad as a March hare is right, and highly entertaining. I didn't realise that they could jump that high.
Now there is a not-very-well-known variant of Sods Law that applies to scrapyards. It goes to the effect that you can be absolutely sure that the only vehicle in the yard that still posesses the part that you require will be impossible to get to, and when you do get close enough to see, you find that it is broken. There will be dozens of the earlier and later models, and plenty of nearside parts when you want offside. You are absolutely certain to come away with either the wrong bits or nothing. In this case the springs from a nearside mirror fixed the Boss's offside one after a bit of a battle.
Having got into the swing of doing things, and the weather staying fine despite the forecasters gloom and doom predictions it seemed a good time to indulge in a bit of elder and ivy pruning and this rapidly turned into wholesale deforestation. As a result, I'm knackered, and I'm going to have a lay in tomorrow, so help me! The clocks go forward this weekend so I'm going to make up for it with an extra hour in bed. I'm going to use the excuse that it is purely therapeutic as a result of the late stages of treatment. Those of you who know better may prefer to call it being bloody lazy.

Thursday 16/03/2006 - Forty Something

Sorry for the two week absence. I blame it on the gainful employment taking up far too much of my valuable time, and what is left over is getting fairly thinly spread. I'm still getting used to the idea of something beyond my control having first call on my time, although, come to think of it...? Mind you, this stuff pays!
Lets try some catching up. LIFO! (Trade expression last in, first out!) Just in latest bloods from Tuesday's tests. Last month's in brackets as usual.

White cell count 3.4 (2.6)
Neutrophils 1.2 (0.6) Doubled in a month! - got a Hoorah from 'T'!
Hb 11.1 (11.3)
Platelets 232 (189)
ALT - still normal!

Well, it goes to show that you can't read very much into a single month's figures. Less experienced nurses and treatment centres would have been seriously worried, but 'T' just said 'see what happens next month' and sure enough the result is the best figures I have had for ages.

Next backwards was daughter's central heating system breakdown. That wrote off what was planned to be a relaxing evening curled up in front of the TV. I'm pleasantly surprised to find I can summon the energy to do this sort of thing at this point. A few hours clambering around lofts and cupboards trying to diagnose strange plumbing of dubious origin was just what I had in mind. Sorted it though, so at least all (including the granddaughters) are warm now! Blocked pipe of all things - one of the most difficult faults to find!

Most of the weekend was taken up wrestling with the car. The starter motor had died. No big deal normally, you would think. So did I until the point when I found out that that some diesel Cavaliers have Isuzu engines where some idiot fitted the starter to the back of the engine in the tiny gap between the back of the engine and the passenger compartment. The only way to get at the thing is to lay horizontally across the top of the engine and immerse your arms to their full length in the gap amongst all the pipes and wires. You have to work by Braille, as you cannot see anything. Having eventually got the b****y thing off and apart I find that I have been supplied with the wrong brushes, so another expedition is called for. Correct ones not available, so cut down some larger ones and fit properly, unlike someone else's previous efforts, and lo and behold we have a working starter. Re-fitted it during the snow showers. I'm getting too old for this! Am I hell!! There is still much truth in the old saying that if you want a job done properly then do it yourself! At least the car responded by sailing through an MOT two days later.

It seems to have been two solid weeks. I'm getting a very guilty conscience, as many friends have been neglected as there just does not seem to be the time at present, and I'm struggling not to fall further behind. I think some of it is still the process of adjustment that comes with working for someone else. When you work for yourself, you can just dovetail things together into an order that appears to be the most efficient approach. When you work for someone else, you just write off a block of time, and fit 'your' life into what remains. In theory it is a smart idea to allow some time for 'leisure' and 'relaxation' but this seems somewhat absent at present.
Hopefully things will get a little easier in the near future. Sticker number 44 is in front of me from last night, and that means only four more weeks to go. The irony is that I am beginning to suspect that ending the medication may not have the big effect that it does for most. I think that a lot of this may be psychological and the stimulus of the change in lifestyle that I am already going through may have already 'bought' me some of the end-of-treatment bonus in advance.
On the subject of which, it is now a month since my last nicotine. So that is another myth busted. You can tell anyone who says it can't be done on treatment that it is complete rubbish, and in my opinion it is probably easier than normal. Virtually no cravings after the first few days, and starting to feel the benefit now.

So help me, I'll get a bit more organised in the near future.
(I bet some wit will carve this on my gravestone!)

Thursday 02/03/2006 - The Answer to the Question.

Forty Two, that is! For non-devotees of Douglas Adams and the HitchHikers Guide to the Galaxy, forty two is the the answer to 'What is the meaning of Life and all that stuff'? Injection 42 was last night, and uneventful apart from marking the seven eighths point. Six more weeks to go.
I should really have left it a few days until the 6th because that would have made it a serious aniversary. The 6th March marks the anniversary of giving up alcohol, the day I was given my treatment start date, and the start of this blog. That lot together make it a serious milestone. A little water has gone under the bridge during that time. I must admit that I have surprised myself a little in getting to this point. I would have expected to be in a pretty bad way at this point, rather than 'mostly functional' which is probably a fair description. I think I must have been slipping in that I could have got long odds from any number of people on the chances of me doing a year without alcohol. Hell would freeze over, etc.
One of the interesting aspects of treatment which is rarely discussed, is that it forces a degree of self exploration. Pre-treatment most are anxious that they will be faced with a test that they may not be able to face. This is accepted as normal pre-treatment nerves. What does not seem to be recognised is that when you get to the point when you know beyond all reasonable doubt that you will make it through, you have become a very strong person in the process. Besides the physical aspects of treatment, the chemical psychology of the 'rage' and the sheer mental pressure of facing the prospects of an uncertain future and possibly a slow premature death all add up to a form of mental conditioning that allows you to cope with serious issues with very little problem as the context in which they are seen is somewhat different. I have seen echoes of this in paraplegics, who are deliberately indoctrinated with somewhat of a stroppy attitude by some of the treatment centres as a method of coping with everyday life. Maybe Hep C does not get that far, but you can see parallels. So the moral is 'Don't f***k with ex-heppers! They are stronger than you think, and inclined to bite!

Thursday 23/02/2006 - Progress Report!

Well, it has been a busy few days. The new job is great. Nice people and a great product to develop. Loads of potential, and getting results already. Nice to get back into the 'work ethic' thing again. The absence of nicotine has been a real revelation. I fully expected to struggle, and it has been a damn sight easier than the last time. I'm doing the brutal 'cold turkey' without the patches and gum, in an effort to get it over with, and I am currently convinced that it is easier. At least the effects are not as prolonged. The other possibility is that after 41 weeks of combo treatment you are so mentally strong that nothing is going to beat you! Either way, it is an ex-problem, and if anyone else says it can't be done, the answer is spherical obloids!
The Ipswich support group evening was interesting. Well attended, and quite a few who the Boss and I know from the web. Nice to put some faces to names. We had Milly, WildWoman, Jane1962, BemusedBen amongst others. Spent quite a while chatting to Mick, who is quite an inspiration. He has Hep C still, but had a liver transplant a month ago, and looks bloody great. From the sound of things it was touch and go at the time, and he is one of the very few people who can tell you what end stage liver disease is like 'from the horse's mouth'. He may well yet have to do battle with the Black Dragon, but for the time being all is well. He and another of the guys there have beaten alcohol and heroin, and it does make you think you've got it easy when you see what some can get through.
They got an instant demo of how to do an injection, as the meeting ran late, and rather than struggle in the half-light in the car, they got to see a real one. Suited me a treat as I would have been woken half way through the night otherwise as the timings were all wrong. Symptom-wise it has been a little chaotic recently as I have moved injection day, and things are still settling down.

Wednesday 15/02/2006 - Busy? Busy!

I seem to have spent Monday and Tuesday chasing round the countryside. Tuesdays was just the routine week 40 appointment with 'T' to get meds and do blood tests. Blood results are in. Last month's in brackets as usual.

White cell count 2.6 (2.9)
Neutrophils 0.6 (0.9) oops!
Hb 11.3 (11.4)
Platelets 189 (198)
ALT - still normal!

Oh sh*t!. Just what I didn't need right now! Neutrophils outside the safety zone. Anything under 0.75 is ammunition for a dose reduction of the interferon. If this had happened early in treatment I would be worried, but at 40 weeks it just makes things complicated. Most treatment centres will allow a drop to 0.5 these days, and 'T' says she is comfortable with waiting until next month before considering any changes. Frankly, by next month there will only be another month to go, and it will take some doing to make me dose reduce then, particularly as I already have enough drugs to hand to finish treatment!
There is an element of risk in all this, as with a depressed immune system there is a serious risk that any infection could cause serious problems.
It is quite ironic that I predicted this situation last year and that it could be a close call right at the end. I'm not particularly pleased to be proved right!

The better news is from Monday evening. A very worthwhile trip to the Royal Free Hospital, London. The easiest way to explain it is to repeat my post on the forum.

Those of you who follow the 'live chat' sessions on the Hepatitis C Trust's site may have noticed the discussions recently with Professor Geoffrey Dusheiko of the Royal Free Hospital, London. The subject in question was what could be done to improve the education of patients in the gap between diagnosis and treatment. The idea under discussion was to run the equivalent of a Hep C 'ante-natal' class so that patients could be taught about the basics of the virus and how it was treated before their first clinic appointment.
The benefits are obvious in that patients would have all the basic facts, and hopefully some of their fears allayed before even seeing a consultant. An enormous amount of clinic time could be saved by allowing one person to teach 30 patients in one hour what would otherwise take 30 hours. The approach should allow more patients to be treated at lower cost, and have spin-off benefits such as providing a permanent facility to teach the basics to trainee medical, health, and social workers, to say nothing of the doctors and nurses not having to recite the same old stuff time and time again in answer to the same questions.
Well, Professors make things happen! (Particularly this one!) In the space of a month it has all been sorted out. The first two meetings have been arranged, and the Boss and I were priviliged to attend the first yesterday evening.
It came as a bit of a shock to be reminded of just how terrified those who have just been diagnosed can be. The Professor is a brilliant speaker with the gift of being able to reduce technical aspects to the level that anyone can understand. He is also not afraid to answer difficult questions, and his reputation for straight talking is well deserved. He spoke for an hour, and covered just about all the areas you would need to know about at the start, stopping regularly for questions. In short, it was magic.
Some very worried future patients went home a lot happier, and an awful lot wiser.
The first meeting was lightly attended as there was not much time between letters going out and the meeting itself. Next month's is already quite well booked and the attendance is around 50% and rising. It was certainly an excellent dry run that showed the potential of the idea. The Professor is considering the possibility of employing an actor to play the part of a Hep C Patient so that an interchange can develop and questions that nervous patients might be reluctant to ask can come from the actor. It might be possible to video one of the meetings and distribute the DVD. All in all, it seems a great step forward, and I'm extremely jealous of anybody being treated by the Professor!

I think that I may be forgiven for saying that Prof. Dushieko is one of very few in the Hep C world who have managed to impress me. Us old heppers are usually on the sceptical fringe, and wouldn't bat an eyelid if most consultants farted in A minor and burst into flames, but this man is different. Besides being prepared to look at radical ideas coming from patients, he has the balls to try them, and that makes him very rare indeed and worthy of support.

I don't need to remind myself that it is my first day nicotine free. I haven't climbed up the wall yet, and there is a strange space on my desk where the ashtray once sat. I can detect the smell of a lit cigarette from about five miles downwind, and I'm determined to beat it. I find it ironic that Parliament chose the same day to go for a 'public spaces' ban. I do think it is an infringement of liberty as it looks as if it will be illegal for any group of smokers to form their own club and smoke in company. What this has to do with anyone else defeats me.
I am most curious to see the effect on the licensed trade when this comes in. There appears to be precious little demand for smoke-free pubs at present judging by their popularity, and figures from Ireland would suggest a 25% drop in trade. I wonder if the full economic impact has been considered? The duty on alcohol and tobacco currently finance the whole of the NHS with change left over. Where is the money going to come from to plug the gap made when revenues fall? The non-smokers of course. Appropriate, as they live longer and use up more NHS resources.
Anybody with half a brain can work out that there are a lot better ways of handling the problem. The simplest of which is to increase duty on tobacco by 50% per year. Any surplus revenue can be used to improve the NHS.

Friday 10/02/2006 - Just the job!

Well, I got the job! Start in a week or so! I'm still getting over the shock to some extent as I didn't expect to hear until Monday. It is nice to have a positive outlook on the future and the new challenge is a real spur. It is the sort of work I'm good at and enjoy doing, so it is a real turn up for the books!
It is nice to have the 'focus' restored and be able to see where I'm going. Lots of plotting and planning now. I'm virtually certain to move my injection day from Monday to Wednesday as that will shift the worst of the 'rage' symptoms to the weekend. I could tough it out, but I would rather not take the chance of a 'riba row' when I'm still adjusting to the new environment and probably stressed out!
It is handy that this type of work involves very little physical exertion, so treatment should not have too much effect. With only eight weeks or so to go and everything stable it all looks good.
I think that the other change has to be that the nicotine needs to go. I'm not particularly looking forward to it, as stopping during treatment is not recommended, but I was planning to quit (again) post treatment and this is only a few weeks early. I've stopped before, (for over six years last time) so I know I can again. My only query is to whether to opt for the 'patches' which worked last time. I'm inclined to 'cold turkey' it this time, and get it over with, so if I start biting peoples heads off in the near future (even more than normal!) you can deduce that it is nicotine withdrawal rather than riba rage.
I had one joyous moment earlier when the regular pile of emails came in from the usual recruitment agencies. Instead of flogging my way through the usual lists of vacancies it was a case of DELETE WITH GLEE! Bill Gates should invent a special function for this as it would be handy for spam as well! It will be nice not to have to job hunt any more. The mentality of some employers never ceases to amaze me. You see the same job slightly differently worded going round different agencies and you know that they are asking the impossible. Usually they want a high level of highly specialised experience and a good degree and totally forget that it takes time to get experience, and targeting university leavers or offering university leaver pay rates is unlikely to get a result. I will swear that the man who writes the job description is looking for a forty year old, and the HR department are only prepared to offer university leaver money, and want to cover their corporate backsides by making sure that only those with the highest possible qualifications are considered. They can always hold their hands up in horror when their new employee turns out to be absolutely useless and say 'but he had a good degree'. It completely escapes most agencies and a good few employers that you start learning when you leave the academic world, not before.
Anyway, it is all a thing of the past for me! Onwards and upwards!

Monday 06/02/2006 - Three thirteens

Injection 39 tonight, and a strange sort of number. The third lot of 'lucky for some', and the last! Into the 'roaring forties' next week, and at least I can be confident that unlike the latitudes of the same name, I'm not going to be blown off course. The end is nigh as the pundits would say. Not quite 'nigh' enough yet, but getting there.
It has been a busy few days. (Time flies when you are having fun!) Lots of things on the go, including major job hunting. Second interview with a company today for a job that I really want, and I think I stand a good chance, so fingers crossed that I get it. Should know within a week. I'm having to damp down my enthusiasm in case I don't.
By the way, I'll probably be a bit late blogging next week as I'm in London on Monday evening, but I'll try and fit in one beforehand! Hopefully there will be lots to report Jobwise, and Hep C Wise as there are a few developments which will be of interest which should be made public about then.
There has been quite a lot of discussion about 'horror story' websites on the forum recently. I was quite surprised at how bad these actually are, having dismissed them at a glance in previous researches. Generally, any site that is selling anything I automatically dismiss, particularly if it is vaguely herbal in content as if herbal remedies could cure Hep C we would all have been cured long ago. The fact that nobody has been cured by herbal remedies seems to have escaped the authors, and their approach seems to be to knock conventional treatment by using ridiculous scare stories with a view to giving worried patients nowhere else to go but the herbal route. I hope that most people have enough good sense not to believe the sort of rubbish that is put up on these sites.
I'll give you an example. One classic tale is of a man who successfully completed treatment, but suicided six months later by blowing his brains out. The relatives blame this on interferon. You don't have to be a genius to work out that any interferon effects would be gone by about three weeks after treatment end, and anyway, if interferon was likely to be the cause the problems would have been during treatment, not six months after! It is a bit like blaming the taxi driver that drove you to the station for your injuries in a subsequent rail crash. Mind you, the alternative theory might be that the relatives finally got to him, in which case I can understand the suicide!

It is now Thursday and I'm now on my fourth attempt to finish this entry. Everything is conspiring to to stop me! Emails coming in as I write!
Two unexpected visitors yesterday had me digging out the wildlife book. They turned out to be long-tailed tits attacking the bird feeder. Very strange on two counts, the first being that despite being Suffolk born and bred, I've never seen any before, and the second being that according to the book, they are normally countryside residents rather than town ones. They are a little smaller than a sparrow, with long slender tails, and a peculiar 'twittering' call. Needless to say, they had disappeared before I could grab the camera.
Talking of wildlife, my mate Eric has finally got his photography site up and running. He walks his two collies early in the morning with a camera in his pocket, and the results are quite spectacular. He treats photography as a self-financing hobby. If you want an idea of what some of the countryside around here looks like, have a look. Most of the wildlife shots are taken in the same area that my mutt gets walked (when she behaves herself!). Anyway, it is worth a look!
Eric's Photos (Click the Gallery link)

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