Sunday 12th December 2010 - Peacemaking, or at least some progress
The Boss and I finally encountered JB 'in the flesh' at the Hep C Trust Christmas function in London this week. Incidentally, it was a great day - putting faces to names that we have been conversing with for some time, and adding a few new ones. Great to see Saskia, Sam and many others from the Trust again. They do an awful lot of fine work, and don't get the thanks that they richly deserve. Likewise the sponsors and celebrity guests who worked hard to make it the big success that it was.
Anyway, a JB encounter was going to happen sooner or later, and I was fairly sure he would be there and very curious as to how he would play it. Basically, for whatever reason he chose to keep a safe distance and avoid any contact. Fair enough, I suppose, but not exactly the best way to clear the air.
The Boss and I had discussed the options at length in advance, and the was no way we were going to allow the status quo to continue. If he wouldn't make a move then it was up to me. Towards the end of the do I walked up to him and offered a 'let bygones be bygones' and a handshake. When he got over the shock, he accepted the handshake and agreed. No more was said, or needed to be said. As far as I am concerned the matter is now closed.
I am now in a quandry concerning the posts below. I am half inclined to take them down as a gesture, and half inclined to leave them alone as you cannot re-write the past with a few strokes of a delete key. If only life was that easy. For the time being, they can stay whilst 'under consideration'.
Thursday 6th August 2010 - The Behind the Scenes JB Saga Concludes
Unbeknown to most people there has been a bit of a running battle going on in the background. As it was 'sub judice' I have been unable to make any comment until now. As it is now settled and there doesn't seem to be a more appropriate place, you get the full story here.
To give a bit of background, JB (aka John Semple) and his wife Chrissy run the Nomads forum. They were originally members of the HepCUKForum which the Boss and I run, but there was a big falling out, and they departed on somewhat acrimonious terms to do their own thing, making strenuous efforts to do as much damage as possible in the process and take as many members as possible with them. Since then the relationship between the two camps has been a little strained to say the least, although at times it did show some signs of returning to some sort of normality.
In general terms we adopted a policy of letting them get on with it, but refusing to allow any promotion of the Nomads on the HepCUK Forum due to the fact that so many who had placed their faith there were either hurt or denied support when they most needed it. The continued steady trickle of returning members continues to today. Needless to say, this didn't go down too well in certain quarters!
JB can be a nice guy when he wants to be, but he has a particularly nasty streak that surfaces occasionally, particularly when he does not get his own way. His method of 'getting at' people who irritate him has been to write totally scandalous fictions about them in his blog. Most recipients are not in a position to take any legal action to stop it, there being no legal aid available for either prosecuting or defending libel. A fair amount of lies, insults, and other filth concerning yours truly and the Boss appeared there over time. My initial reaction was not to read it and to ignore its existance. The situation changed somewhat when several people contacted us to say that the latest installment accused us of theft of money from a charity, namely NHCN. We both have a fairly thick skins as far as insults are concerned, but take exception to being called thieves.
Unfortunately for JB he picked the wrong target to badmouth. The legal action that we started has now concluded, and he has been forced to retract, apologise, and undertake not to behave in a similar manner in future. JB procrastinated, attempted to 'frighten us off' with a big London legal firm, and was stupid enough to claim that the blog contents were not his. All at different times of course. The story changed weekly. It was all to no avail as his guilt was blindingly obvious to all concerned. The apology appears below. He can consider himself fortunate. Were it not for his 'somewhat constrained financial circumstances' he would also have had to foot the bill for the very substantial legal costs of both sides(most of which could have been avoided if he had co-operated in the early stages) and damages above that. Should he transgress in future this can, and will, happen, even if it bankrupts him.
The question remains as to whether someone who behaves in the manner that he did is suitable to run a forum for vulnerable people. We have no end of trouble convincing people that the 'caring and compassionate' image is just a front, and what lies underneath can be downright nasty. Form your own judgement. The apology for his latest transgressions follows.
The Boss and I would like to express our thanks to the people who have supported us through this battle, including those who volunteered to provide statements and appear in court if necessary. It is not appropriate to name names, but you know who you are, and have our deepest gratitude. You find out who your friends are in circumstances like these, and we are both surprised and gratified to find so many offering to help.
Having been through this process we will be happy to help anyone in a similar situation. We are also in a position to recommend a damn good solicitor with specialist knowledge in this field.
Sunday 27th May 2007 - on the way to the Forum?
Wow, have I got some catching up to do! I knew it was a big gap since I last wrote here, but this long is ridiculous! Life has been very hectic over the last few weeks. Besides the NHCN meeting which was great, positive and productive, there has been the Lincolnshire 'Hepper Bash', and yes, Ron passed the Forum to us!
The forum transfer has been eating up most of my time for weeks now since Ron made his most generous gift. It has meant a steep learning curve for me in terms of setting up the new URL and getting it working. Like many others my web experience to date had been further down the line, and servers and managing them is all new territory. This area was a bit of a battle at the start, but the guys at SPRY who are supplying the webspace are very helpful, and that side of it went quite well. The more interesting bits came with the actual website software. The server actually has the option to pre-load the forum software from its library. Very handy, as it installs it all in a few seconds, and puts everything where it is supposed to go with virtually no help. What's more, it even works! The snag comes when you look at the version number. It is a few steps behind the one currently being used on the forum, and of course that makes it incompatible. OK, so on to the support site, and there are nice utilities and instructions to upgrade to the latest version. Wonderfull! Small snag in that this would then take it to one step ahead of the required version. Bite the bullet time, upgrade to the latest version, and start worrying about getting the data from the old site, and converting it so that it runs on the new one. A lot of work investigating database layouts found very few differences, so it all looked very easy at that point. No such luck!
With The Boss as an administrator on the old forum it was practical to get a backup of the forum database to work with. It is a 280 Mb file with all the data in it in a non-compressed form. It is a nightmare to work with, but needs must. I ended up writing programs to take it apart into individual tables to work out what was needed. Just as well, as uploading it to the new site would not work. For a start, loads of things would be different including vital bits like server and database names. There was also the additional problem that most servers will not allow uploading of a file of that size, and tend to 'time out' as they think that a program has got stuck and stalled. A lot of research found a solution - a program that works the other way around. Sits on the server and pulls up data in small chunks. That fixed that one!
Back to my 'take it apart' program, and produce a new version that only selects the 'real' data, which comes out at 75Mb, and upload that. Lo and behold, it works! Then the really interesting bits! Over the last year or two, Ben, Ron's son has done an excellent job of de-bugging and improving the forum code. The new version that I have loaded is minus many of these bits. Another rapid learning curve follows as I get to grips with MySQL and PHP, and try to follow in his footsteps. I think I have all the more important bits rolling, including a couple of anti-spammer improvements that are long overdue.
Anyway, we did the transfer yesterday, and it all appears to be working. There are a few 'shaky' areas which need patient de-bugging but they can wait. The server seems to run very well. The old one seemed to have occasional fits where it would lose connection usually when you were in the middle of a long post, and refuse to let you back in for ages afterwards. The new one (touch wood) appears to be vice-free!
Anyway, that has kept me out of mischief for the last few weeks, and had me tearing my hair out (what little still remains!). Talking of which, time I updated my photo! Michelle Martinoli took so really good photo's at the NHCN, and having decided that my amateur efforts did me no justice, did some of me. Time to get a new one up on the site! It is not all vanity, as I've been on the receiving end of trying to meet with someone who you have no idea what they look like, and they of you. It is a lot less complicated if one person's photo is in the public domain, and then at least one of you knows they are talking to the right person. A lot of people in the Hep C world have to keep their identity hidden because of the ridiculous ignorance and prejudice that surrounds the virus. I am immune to such nonsense, so at least I can make one half of a 'strangers meeting' easier.
I should comment on the Heppers Bash, but really enough has been said on the forum, and those who are really interested can look there. Suffice to say, it was one of the best weekends I have had in ages. Quite surprising how much fun you can have without alcohol! I'm told that I make a convincing vicar, and if that doesn't tempt you to look it up on the forum, then nothing will! Many thanks again to JB and Chrissy who did us proud!
Scrubbed up, and trying to keep order during Q & A at the NHCN.
Sunday 8th April 2007 - of Mice, Men, and Forums
This week's news has come as a bit of a bombshell. Ron Metcalfe, founder of the UK Hep C Forum, has announced that he wishes to retire from running the forum and move on. This has come as a shock, as the forum has become a lifeline to many struggling with treatment, or just living with the virus. Quite rightly he has made a brave decision to move on, as he has already contributed far more than could reasonably be asked of any man, and it is only fair to his family that they should not be burdened forever. It also serves as an illustration to those following in his footsteps that you can cure the virus and leave it behind you. Hep C is not forever!
Ron has generously offered the forum to any interested parties who might be prepared to take it on. The Boss and I have discussed it at length. As many of you will know, she (Caroljb) has been moderating for some time and doing much of the administration work recently, and I think continuity would be best preserved if this continues. This also seems to be the general view of forum members judging by the feedback received to date. Ron's departure could place her (and me) in the difficult position of having to answer to new 'owners' with possibly a different agenda, and jepardise the independence for which the forum is noted. Having thought long and hard, I have decided to 'bid' for it myself, or more precisely for The Boss and me.
I have made Ron an unconditional offer of a domain name and six months server fees to go with the forum, regardless of who the new owners are, as the best way forward is to place the forum in its own webspace with an appropriate domain so that it has space to expand and will be faster for users. This would also mean that any future change of 'ownership' would just be a password and login changing exercise. Unfortunately, Ron got his sums wrong, and the requirements of the forum are a lot bigger than he first said. It needs a whopping 2Gb of space and 80Gb of bandwidth. For the non-technical, by comparison, this site operates on about 1/100th of that! It comes out a little more expensive than I had planned, but what the heck. It is a good cause! The irritation is that server choice is influenced by bandwidth, and I might have made a different choice had I known.
So, the new domain name will be www.HepCUKforum.org which now exists and is registered to me for the time being. I assume that the new owners will not be churlish enough to refuse it! There is nothing there but empty space as yet but it works! The particular server company do an unlimited bandwidth option which is not much more expensive, and I may well go for that. They will love me - upgrading before it is even used! I'm ever hopeful that Ron will choose to pass the forum in this direction, but I will respect his decision whichever way he chooses.
I suppose as I have officially made a bid, I should 'set out my store' as to how I see the forum developing over the next few years. In a nutshell, the philosophy would be 'If it ain't broke, don't fix it!'. The strategy should be for very little change, and any change slow and gentle. Even if it comes my way I don't plan to get involved in the day-to-day aspects of running it, other than on the technical front. You would NOT find me as a moderator, as The Boss does a damn good job in that direction, and is not averse to chewing my ear if I get out of line. I relish the freedom to say what I think, and don't want to be burdened by 'setting a good example', as I would have to as a moderator. The Boss can choose her own moderators as she sees fit, but had better not include me! Hopefully, she and Ron will continue in the same vein regardless of who takes over.
Regardless of who takes over, from the forum users point of view if it goes the way I plan there will be little disruption. This is the reason for my gift of a domain name and server facilities. Technically we would set up a redirect so that access to the old site will automatically transfer to the new one, which would look exactly the same. The next step would be to encourage direct access by a 'you will be transferred automatically in ten seconds' type page with a message that 'to avoid delay in future please go direct', and when just about everyone is using the new location directly, break the old link. The timing of all this would be very much up to Ron. This is probably the best method of transfer, regardless of who takes over, and has the big advantage that once it has been done the forum is then 'portable' and could be moved between servers (and owners) seamlessly in the future. The other big advantage is that the new server can be set up and tested with an old copy of the data, and the actual transfer only done when everything is sorted on the technical front. This would entail the site being down for a matter of minutes only!
Anyway, hopefully Ron will make up his mind in the next few days. I should add that I have not posted anything on the forum about this, as I think it is only fair to allow him to come to a decision without pressure, or at least without me adding to the pressure. The entire Hep C world owe a great debt to Ron Metcalfe. His Blog, which was one of the first, and in later days, the Forum have been the inspiration that has convinced many to actually consider treatment, and the latter has provided the knowledge and support that has got so many successfully through treatment. There are a lot of people walking around fit and well today who would have been dead or dying were it not for Ron. Long may his legacy continue.
Sunday 25th March 2007 - Pre-Flight Nerves?
Well, the chilly weather has actually reminded me that I mean't to post this one of the grandchildren ages ago, or so it seems! Spring is a long time coming this year.
Granddaughter No 1 was most distressed to find Mr. Snowman had gone away, but reassured that he was on holiday at the North Pole, and would be back when the weather was more to his liking!
It has been a mixed few days. The good news of several familiar names getting SVR is balanced by news of failure from two long-standing ones. HepCboy has been around for a long while, and probably put as much into fighting the virus as anyone. Likewise Steve (Notts). If anyone had earned a good result, these two would be high on the list. It leaves me with the usual mix of emotions. The fact that I still get angry when the virus has its little victories still surprises me, and I still feel the ache that I know they must feel. It hurts to have been through it all for no result. Actually, that is not the full truth as you get a 'honeymoon' period after treatment when the virus has taken a severe hammering and isn't doing much, and hopefully your liver has made the most of the break and recovered a bit. I can only hope that they (and me) get a long honeymoon, and VX950 is sharpening its claws by the time it ends.
Talking of VX950, it looks as if Vertex are going to announce the results of the latest round of trials at the EASLD conference mid-April. Sods law says that I will miss the exitement, having enough of my own to contend with at the NHCN (National Hep C Network) conference. It is in Derby on the 14th/15th April at the Pride Park stadium. No! Not on the pitch! We are not that big (yet!). They have a very nice hospitality suite with plenty of capacity for a hundred or so of us, so see you there maybe! I'm getting nervous already as I'm doing a workshop loosely titled 'Hep C for Beginners' on the Sunday. It will be the first time I've attempted anything like it, so it is new ground, and whether I will cope in front of an audience remains to be seen! There are a few places (not many!) still available for the 'full Monty' which includes accomodation and the main evening meal, and there will be enough space for anyone who turns up on the day. It is free for anyone with the virus and their partners, although the general approach is that anyone who can claim costs against professional expenses should pay. For all that, the fees seem very modest to me! There are a limited number of places with paid for accomodation and food for those with the virus who would like to attend but can't afford it. I'll dig out the link for information and post it below!
For those who wonder how this sort of thing is financed, the answer is that the big drug companies, in this case Roche and Shering Plough, give grants to help. The grants come with no strings attached, and they make no effort to promote either themselves or their products. When I first found out this, I was highly suspicious, as big companies rarely spend money without some hope of return, and I was reluctant to be associated with it. Having thought long and hard, my views are a little different. It is fashionable to knock big business as being entirely money driven, but they DO have an altruistic component and it does result in this sort of thing. The sums involved are a drop in the ocean to them, but have a significant effect on a lot of people, and in that respect it should be encouraged. You can take the cynical view that more diagnoses of Hep C means more drug sales for them, or the other view that they will make the money anyway, and this way saves lives. If this is the acceptable face of capitalism then I'm all for it!
Click Here for NHCN Conference details
Those who wish to just turn up are welcome, but letting the NHCN know in advance would be helpful!
See you there!
Friday 16th March 2007 - Rage, Updates and bits!
A few interesting bits to report this week. Firstly, there is a pending change in the Roche guidelines for use of Pegasys. The official wording goes like this.
'The change means that patients infected with G1 and a low baseline viral load (less than 800,000 IU/ml), or infected with G4 (irrespective of baseline viral load), who are PCR negative at week 4 of therapy will have the option to end treatment at week 24 if they are still PCR negative.'
Hmmmmm! By my way of thinking this means that anybody genotype 1 on Pegasys MUST have a viral load done at treatment start, and if it is under 800,000 IU/mL then another test MUST be done at 4 weeks. Anything else contravenes the drug company's prescribing protocol. Likewise, all genotype 4's must be tested at 4 weeks.
They go on to say:-
Support for this change comes from a clinical study conducted by Jensen et al., together with subsequent analyses that have shown that in G1, LVL patients, treated according to this algorithm, an SVR rate of 93% was seen following 24 weeks of therapy with Pegasys plus Copegus.
I know this only amounts to a small subset of patients, but 93% SVR of genotype 1 is pretty impressive for a 24 week treatment.
The 'Doctor's Corner' seems to be going down well, judging by the amount of traffic that it is getting. I have added Word and PDF download options to the end of it so it is a bit easier to save on your own machine or print out. Don't forget that comments, favorable or otherwise, are welcome and treated in confidence!
A rather interesting debate has been going on between yours truly and a couple of 'ex-heppers' concerning riba-rage, or to be more precise the fact that it seems to persist beyond treatment end in many cases. In theory the interferon which causes it (NOT the ribavirin despite its name!) disappears in around three weeks, so beyond that point should not influence matters. The 'rage' tendencies appear to go on much longer. Many treatment centres seem to run on with anti-depressants for a while after treatment end, and I suspect that this may be the result of experience with early A/D withdrawal amongst other reasons. I'm beginning to suspect that there is a bit of 'Pavlov's dogs' coming into play. Pavlov, as you know, found that if he rang a bell at dog-feeding-time, after a while ringing a bell at any time caused the dogs to salivate. Perhaps regular occurrances of rage during treatment build pathways in the brain such that certain stimuli afterwards still cause the rage reaction? Could be! Perhaps running on with antidepressants for a couple of months is a particularly good idea, as it will reduce the chance of learned rage pathways being re-used and reinforced! This all fits the facts fairly well as only those who have had multiple rage sessions during treatment seem to suffer afterwards, and those who remain on antidepressants for a while don't appear to experience the rage tendencies of those who stop early or don't take A/D's at all.
Next thing on the site maintenance list is the 'Other Sites' links. Due for a dust down and spring clean! Did I say Spring? They are forecasting snow again next week!
Saturday 3rd March 2007 - Return to Blogging!
Well, I've been meaning to get back to blogging for about 3 months, and every time I've
got close to finding the time or enthusiasm something has got in the way. Apologies to everyone concerned! I'm going to make strenuous efforts to get going again and keep up!
Just for a change today, events have conspired to actually stop me doing what I had planned, and wonder of wonders I can actually get here again. I had planned to go fishing, but the weather this morning was lousy, despite the mid-week forecast saying it would be good. My normal distraction of being on the forum (www.ronmetcalfe.com/hepcforum) is not available as there is some weird internet fault on my connection that is blocking access to it. The connection gets as far as a router in Shropshire and dies. Nothing else seems to be affected, as it probably uses different paths, but the frustration is maddening. I'm getting 'grevious bodily earbashing' from 'The Boss' as she is a moderator on the forum. Needless to say, it is my fault (isn't it always?) and being 'technical' I should be able to fix it! I wish!
There has been an awful lot of water under the bridge in the last 3 months. It is a bit of a job as to where to start with catching up. I had better close the previous thread by saying that we finally lost Lady. A few weeks after her recovery from surgery she had two massive convulsions, and began to loose muscle and balance control. We came to the conclusion that she had a secondary cancer in the brain, and it was time for an elegant exit. It is the one service that you can do for an animal that is denied to humans. The house is strangely quiet, and we have found that we cannot hear the doorbell when we are upstairs. It was never a problem in the past as it was invariably rendered superfluous by barking. Bedroom snoring is in mono rather than stereo now, and the bed remains undisturbed during the day. I still double-check when closing a door to make sure that I am not about to cut a dog in half. It is strange the things that you miss.
My own health has been pretty good. A few creaks and pains are slowly returning, but nothing of any great significance. I am beginning to wonder whether it might be a combination of alcohol and the virus that causes many of the symptoms, and without one or other the situation is somewhat easier. It is nearly two years since I had an alcoholic drink. If my parents were alive I would have got long odds from them against being able to do this, particularly from my father who was a seasoned drinker! Anyway, it looks as if there is not much movement on the treatment front. With any luck there will be trials of VX950 starting next year for non-treatment-virgins and I intend to try and get on one of them if possible. I will have to argue with my conscience as to whether by doing so I will be denying someone who needs the place more than me the chance of a cure, but we will see what the take-up is like. If there is a spare space, I'm up for it!
It is interesting to see the effect of Anita Roddick joining the ranks of HCV-outed celebs. The overall effect seems to be a mixed blessing. The big positive is the extra publicity of another big name to attract headlines, and she certainly handles the media well, and timed it accordingly. I'm less sure of her personal approach in that going to see Addenbrookes to talk about liver transplants does not exactly send the right message about treatment. I suspect that if I turned up there asking about transplants I would not quite receive the same reception. Although I'm grateful that she has joined the cause and full of admiration of the fact that she donated her Skipton compensation to the Hep. C Trust, I would have been delerious if she had announced that she was starting treatment rather than giving the impression that treatment was hopeless. If you convey the message that treatment is hopeless, it hardly encourages people to be tested. What's the point if there is no cure? What would be really good would be for a celeb to 'out' in the middle of treatment, and follow up with a successful result. That would send the right message. It has to happen sooner or later, and the sooner the better! I suppose the other incidental bonus is that it does the 'herbal remedies' brigade no good whatsoever, as if there was any hope in that direction someone as astute as Anita, with the resources and connections at her disposal, would have been there like a shot. On reflection, perhaps it is better to take a fatalistic view rather that raise false hopes. I would still welcome her onto the forum (hopefully under an assumed name) and help her through treatment like all the others, given the choice.
We are slowly approaching the National Hepatitis C Network conference in April, and that is very much in my thoughts. The NHCN has made a lot of progress since last year, and is now hopefully on a secure organisational and financial footing. I'll write a proper blog about it, but if anyone is seriously interested in attending, keep the weekend of 13th/14th April clear.
I'm off to do some site updates now, which have been 'pending' for some time. The biggest one is a new bit roughly titled 'Doctor's Corner'. This is a bit of a cheek from yours truly, in that I'm forever told that GP's know very little about Hep. C Treatment, and tend to do all the wrong things for the right reasons when presented with a patient on treatment and in trouble. The idea is that, if they will overlook an amateur telling professionals how to do their job, the notes should provide some of the basic knowledge that is lacking, and hopefully prevent a few cock-ups! I've had the text out for review/comment to a few medical friends, and the results so far have been encouraging. Hopefully, not too many will be upset, and it may do some good. All feedback, positive or negative, is most welcome.
The other long overdue update is to the Blogs list. Having nearly had to put this one into the 'retired or occasional' list, it is about time I afforded some of the newer bloggers some links to their work!
Roll on summer!
Wednesday 27th December 2006 - Seasons Greetings!
Merry (non alcoholic) Christmas and Happy New Year to you all! Apologies for the long delay since the last blog entry. A combination of factors to blame. Mostly pressure of work to get things done before Christmas, and of course Christmas itself. Slightly strange to recall that this time last year I had Christmas on treatment. Not as bad as it might have been, but very strange to go through the season without alcohol. This year is the same in that respect, but a lot easier in that it is by choice rather than compulsion. I definitely feel the benefit. I suspect that the post-treatment protective 'window' that even unsuccessful candidates get can be extended if they stay off the alcohol. We shall see! There is a bit of science in the thinking in that when they cracked the problem of breeding the virus in a laboratory they found that the cause of pevious failure was that the virus multiplied by hijacking 'building blocks' from other cells, and just ran out of ammunition in the test tube. It strikes me that if you feed alcohol to a liver it kills off liver cells, and the growth of replacements will provide ammunition for HCV to breed. This explains the fact that alcohol seems to push up viral loads. If the theory is true, it will mean that replacement cells will be compromised by the HCV, and liver deterioration will be a lot more rapid than if the alcohol was not involved. That too fits the perceived wisdom!
Right now, the only one in the household with a hangover is the dog. She is currently drunk as a skunk sleeping off the effects of a very expensive Christmas present. Around £575 expensive! She has just come back from a very costly visit to the vets, and the general anaesthetic has not worn off completely, hence the staggering around in a daze. We found cancerous lumps on her abdomen, and todays operation was to remove them. Fingers (or paws) crossed that they do not recur as a new dog is about a tenth the price of this sort of treatment, and I'm damned if I would put her through chemotherapy. It is far too much like interferon/ribavirin treatment. Enough said.
Talking of treatment, I had the usual checkup at Addenbrookes two weeks ago. Different Doctor. Seemed to be 'on the ball', but difficult to say for sure. Anyway, the upshot is that no treatment is planned for the next 12 months. I made serious noises about another biopsy in the year following, which may or may not happen. Either way, I regard it as good news in that I can now switch centres if I choose on the basis that Addenbrookes have nothing planned for me, and thus can't complain. My guess is that phase three trials of VX950 will be imminent this time next year, and I will be in the queue.
Sunday 22nd October 2006 - Be Kind to Kitty?
In a light moment the other day the subject of cats arose. Not particularly unusual maybe, but it started a chain of thought that leads me to guess that they might be a possible route of virus transmission. Assuming that you have Hep C and you get scratched by the family pet, should kitty shortly go on to scratch someone else, could the virus transfer? The answer has to be yes. Infected tissue has to be left on the cat's claws, and some of it must be driven under the skin on the next occasion, so there is a very definite route for transmission here. It maybe not as effective as a hypodermic needle, particularly where the latter is pushed into a vein, but nevertheless there is a distinct possibility. Claws are rougher than polished steel and will retain more material, and are kept at a convenient temperature for the virus. Could be another means of transfer in many 'source of infection untraceable' cases. Cat scratches are notorious for carrying bacterial infections, so why not the virus?
The moral of which, I suppose, is 'be kind to kitty' and hopefully he/she will keep her claws to herself. The risk has to be small, but if you see 'that look' in a cat's eye, it may be wise to keep at a safe distance. It would be interesting to know if any vets have Hep C from unknown sources. Mind you, they are probably so adept at dealing with stroppy animals that they rarely get injured. I can see it as a problem in a household where a parent has the virus and there are small kids around. A stroppy cat will ensure their protection from kids who irritate it with an occasional swipe of a paw, and if an infected adult has been scratched earlier....? Doubtless this will not endear me to many cat lovers, but there is no getting away from it. Other domestic pets that have claws could also be candidates. Those with just teeth are likely to be less of a problem.
The other subject much in the spotlight this week is support for those on treatment. I don't mean the day-to-day practical support that is necessary for those who are ill, but more the emotional and mental support that makes the difference between going through treatment with the minimum risks, or ending up a physical and mental wreck. In a great many cases (mine included) partners pick up this burden, and are the unsung heroes of a successful treatment. For all their vital role they get very little training or backup. There are often items on forums asking what those who are about to start treatment can do to prepare, and the issue of partners is often forgotten. My advice is that partners should go along to every test and consultation as a matter of policy, and be as informed about the case as the patient. Invariably, they will pick up information at consultations that does not sink in with patients, and ask questions that would otherwise be forgotten. Besides the obvious points of being able to make sure that medicines are not forgotten or taken twice it is vital to have someone close to a patient who can observe subtle psychological changes which may herald the onset of depression. Even a moderately depressed patient will answer that he considers himself to be normal when a partner can point out behaviour that indicates otherwise. Severe depression is only one step away from this point, and like many of these things it is better addressed early rather than late for everyone's sake. It can be treated. There is a frequently missed sentence in the Pegasys package leaflet that goes like this:-
"You may want to consider asking a family member or close friend to help you stay alert to signs of depression or change in your behaviour."
The drug company is not just filling space on a leaflet. It is good advice, and not heeded often enough.
Sunday 15th October 2006 - George and the Dragon!
The George in question is George Henderson, and the dragon is the Black Dragon, alias Hep C. Still none the wiser? I will explain. George has been posting on the forum (www.ronmetcalfe.com/hepcforum) and has done a thorough job of winding me up. It should never get to me these days, as I'm not currently on treatment, and neither is he. I should have enough patience and experience, having dealt with all the aspects of riba-rage from both sides of the fence, but advice that is likely to cause the downfall of less well clued-up Hep C sufferers and is the proverbial 'red rag to a bull' as far as I am concerned.
George is a bipolar hepper in New Zealand with a drug problem. Hardly a threat, you would imagine, but he spouts a continuous stream of what sounds like science in an attempt to make those considering treatment adopt his wonderful diet/supplement virus-halting strategy instead. It takes very little knowledge to see through it, but it may catch the unwary. It all sounds very wonderful and he has the convenient excuse of being able to discount conventional treatment as of no interest to him, as being bipolar he is excluded. Actually, he is wrong there for a start, as even those with bipolar can be treated, although it is very difficult, and would probably require a stay in an institution or hospital. I don't blame him for shying away from this, or even adopting the approach that he has, but inflicting his totally unproven ideas on unsuspecting patients is criminal. It would be a different matter if he actually went about it in a logical manner. For a start, he does not know his own genotype, viral load, or liver biopsy score. All essential starting points, you would think, to any new treatment. Lets face it, you want to know if the treatment is working, don't you? Well perhaps not! Perhaps the delusion of 'feeling better' may be sufficient. Wasn't it Napoleon who was quoted as saying 'I feel a little better today', moments before he died? There are some definite echoes of that here!
I can see through the pseudo-science and challenge it with little difficulty, but pinning down any one thread takes some doing. It is the classic 'moving target' that presents the problem. He is already off on another tack before the first point is dealt with. Absolutely maddening, in more than one sense I suspect.
It is an unfortunate fact of life that there are always traps for the unwary and the Hep C world is no exception. We are fairly used to the 'herbal' types attempting to sell assorted poisonous plants as being a wonderful cure. Not one has yet to demonstrate any benefit whatsoever. Their usual strategy is to maximise the side effects of conventional treatment to the point that they would have us believe that we would be lucky to survive it. Total nonsense really. A very small proportion actually get serious side effects, and even fewer have any lasting problems. If you look at the statistics, the rate of long term problems is very close to a those suffered by a random sample of untreated people over the same period, and so may not be due to treatment at all.
The bit that really gets to me is the starting premise of many of the herbal types, that because a substance is produced naturally it must be good. I beg to differ. In the majority of cases the plants concerned take the opposite stance, and attempt to produce substances that will kill off anything that attempts to eat them, thus ensuring their long term survival. Actually, the better description is that Darwinism applies to plants. To survive they have to exploit animals or kill them. Generally the difference is obvious, but not to the herbalists. To put the other side of the case, there are an enormous number of chemical compounds in plants and statistically, by coincidence, a few must have medicinal qualities. The unfortunate thing is that plants do not contain any one single chemical, and the odds are that if any particular plant did it would be accompanied by several poisonous ones.
On the subject of food and plants, just consider the subject of diet and weight loss. You would think that it would be straightforward to loose weight. Logic says that if you eat less there will be less of you! Simple! Despite this millions are spent on thousands of different diets all designed to achieve the one aim. If we can't turn a simple principle into practice what chance do we stand of extending the thinking to achieve a high level goal like managing the effects of a virus? Lets face it, less complicated conditions like diabetes take very careful management and continuous testing to achieve even a moderate degree of success. Ask a diabetic about their chances of getting by without blood sugar tests and you can guess what the reply will be. They don't do the tests for nothing. Now extend the same principle to virus damage management, and do tests at monthly intervals, if that. What chance do you stand of a result? Virtually none. Even if you could influence the virus or its damage by diet, which in itself is doubtful, you would never be able to achieve the control needed to get a result. The other burning question is what to test for. The standard liver function tests are of little use. Even if you manage by some means to get the results into normal bounds, there is no guarantee that the effect on the virus will be commensurate. Who is to say that in doing so another factor which IS directly relevent and not being tested for might be driven sky high and have the opposite effect to the one desired? It is just groping around in the dark. Lets face it, if the entire medical might of the planet cannot find a decent marker of the rate of virus damage, what chance does an amateur guess have? The only real proof of results at present is liver biopsy, as looking at a chunk of liver under a microscope gives a pretty unequivocal result. Great for long term monitoring, but I can't see many volunteering to have one every week.
Of course the exception to the rule comes in the form of viral loads. These can be measured relatively easily, even if the test is expensive. Now if you take the alternative view and try to reduce viral load by diet, herbs or supplements then at least you have a valid test to measure it by. Actually the situation is complicated by the fact that viral loads vary continuously and picking out a subtle effect may prove difficult. Having said that, to date nobody has demonstrated a consistent viral load reduction by means of any treatment other than conventional medicine. To make matters worse, there seems to be little correlation between viral load and rate of liver damage. Quite frequently relatively low viral loads are found in those with severe liver damage, and vice versa. Another blind alley? Maybe! If you could drive the viral load to zero the situation might be different, so the method is not entirely hopeless.
Anyway, the upshot of all this is that at present unless you happen to be extremely lucky, your best chance of surviving the effects of the virus is a course of conventional treatment. Even if it does not kill the virus it will set it back and buy you time. When I say extremely lucky, I mean just that. Look at the number of people who have tried the alternative approaches over the years to no result. An amateur could get lucky, but frankly the lottery looks a better bet. A least someone wins there!
Saturday 29th September 2006 - Catch up again
Has it really been that long? Well I suppose so! I really should keep notes of the things I want to blog about. By the time I get around to writing it tends to be only the most recent stuff that comes to mind.
Where do I start? Most important bits first! The Boss has had her second operation and is over it. A bit more major than the last in that she ended up with a hole the size of a hen's egg before they closed it up. Different surgeon, and different stitching technique. Ten non-dissolving stitches externally, with a running stitch in between. Not as elegant as the previous surgeon, but effective enough. I watched (again) and took a camera, but they would not allow me to use it - apparently it needs consent forms done in advance. Oh well! The stitches turned out to be far too tight according to the practice nurse who took them out ten days later. Not much fun apparently! I did volunteer to take them out myself, but the offer was impolitely declined! Anyway, the whole area has now settled down, and all that is left is a thin line and a shallow depression where the surface tissue is thinner. I suspect that even this will fade over time. Hopefully this is the end of the saga, subject to a routine follow up appointment in a few weeks time.
The Boss and I had the great pleasure of meeting AnnieB, who some of you may know from the forum. She was just passing through, and we spent an interesting evening discussing the merits of Hep C treatment and Indian Curry in one of the local restaurants. An interesting combination! Hopefully we will repeat the experiment at some point in the future. To make the gentlemen jealous, Annie is young, very attractive, highly intelligent and articulate. She also has a steady boyfriend, so tough luck!
Talking of Hep C stars, Angel Narbey of Homerton Hospital did the live chat session on the Hep C Trust's site the other day. We are all very keen to complain when treatment is not up to standard, but it is nice to be reminded occasionally that there are some really good people in this field. Angela definitely falls into this category. I know what it is like to be in the 'live chat' situation having done one myself, and take it from me it is not easy! It takes a lot of nerve to put yourself in the firing line! I was very impressed not only on the technical front, but on her ability to handle the more tricky questions with a degree of tact that I could never manage. Wish I lived near Homerton!
We finally solved the problem of what to do with all the passion fruit. We now have passion fruit ice cream in the freezer! The Boss has been up to her culinery tricks again and the result is exceedingly good! My turn now, as I have just harvested my vine. An even bigger crop than last year! 2006 looks like being a good vintage!
Ipswich Support Group meets on Wednesday - usual venue - all welcome!
Sunday 3rd September 2006 - NICE one?
I have finally got around to flogging my way through the new NICE guidelines. Very interesting stuff. Not much change in many respects, and in some ways more remarkable in what has not been said, rather than what has been said.
A very useful bit of ammunition to beat up the powers-that-be is the quote that in England and Wales they are treating around 3000 cases, but the caseload is increasing faster than this, and thus the problem is getting worse. They do at last admit that the probable undetected cases figure could be up to 500,000 which also helps.
Where firm guidance on who should be treated was promised they seem to have fudged the issue and left it to a clinical decision in consultation with the patient. There is some talk of a 'watch and wait' strategy for the first time, but they do state that it is financially viable to treat even mild cases. They have inferred that anyone who wants treatment should get it, and reminded Primary Care Trusts that they have three months from the guideline publication date to allocate funding! They are also pressing for treatment audits, which could be interesting. It might be of value to ask all Trusts for copies of their audits, under the Freedom of Information Act.
From a personal point of view, they state that people who have not responded at 12 weeks to Pegylated Interferon/Ribavirin should not be re-treated. Ha! I responded with the greater than 2 log drop required, and by that thinking I should be eligible for re-treatment! Despite the fact that this might offer a lifeline to me, it does exclude those for whom one course of treatment has failed and re-treatment with a different interferon might work. In that respect it is very much a retrograde step. My advice to those on treatment in the UK will now change. The best method now is to do a viral load test at 8 weeks, and if there is little prospect of making the 2 log drop at 12 weeks (it should be evident by then!) then switch interferons for the next month and see what happens. There is nothing to loose at this point. There are an awful lot of cases who don't get a response, and this is going to be their only option as re-treatment is not going to be offered.
On the plus side, the absolute requirement for a biopsy has now been dropped, despite it still being recommended from a liver assessment point of view. There is no mention of the alternative non-invasive tests which, on reflection, is not such a bad thing as their reliability is a bit questionable. There is a strong acknowledgment that the longer treatments for Geno 1's are a necessity, which could be taken as a hint that 72 weeks might be a possibility. They don't specifically debar it!
I'm slightly surprised to see no mention of protease inhibitors, but from NICE's point of view, mentioning them might invite another Herceptin debacle!
For anyone who wants to read it all the link is here - NICE GUIDELINES
If you have the mental strength and time, reading the older ones (TA075) is also worthwhile.
I'm actually sitting at the computer for a rest! Physical exertion is a bit of an effort as the body's temperature mechanism does not seem up to it, thanks to the virus! A few hours with my baby chainsaw has sorted out a pile of logs for winter, and the troublesome elder trees that were undermining the house wall and starting to block my satellite reception are no more. I'm now cooling-off after the effort. Anyway, I seem to be popular with the 'Boss'.
It has been a long hot summer, and the incidental bonus is that the Passion Flower that grows on the garden archway is now overloaded with ripe passion fruit! They are not supposed to grow here, so we are a bit stuck for ideas as to what to do with them! My vine is loaded with grapes, and will need harvesting soon. The whole area is such a sun-trap that I am seriously considering a solar water heating project. The commercial units available are frighteningly expensive, and at around a ten-year payback they are hardly an attractive proposition, but I may be able to design something a bit less expensive. We shall see.
Don't forget that the Ipswich Support Group meets on Wednesday, and it looks as if we may get invaded by 'foreigners' again. (Civilisation stops at the Wash, or so I keep telling them!)
Wednesday 16th August 2006 - Back to the Grind
Well, back from holiday and into the daily grind again. Trying desperately to catch up. Emails everywhere, and lots of stuff to do. Holiday was great, but not long enough. (Are they ever?) We will slip away for a long weekend in two weeks time to get a second mini-break and bring the caravan back from Devon, so that is something to look forward to.
The Boss got her lab results back, and it is a bit of a mixed blessing. The results showed that it might have been heading towards cancer at one stage, but her immune system had stomped on it, and what was removed was certainly not cancerous at the time. The drawback is that her surgeon wants to play it cautious, and extend and deepen the area that he removed to make absolutely certain that there are no dubious cells remaining to cause trouble in the future. Probably a wise approach, but it does mean more surgery in the near future. Not desperately urgent, but not something that should be left. It is all a bit of a pity as the existing wound has healed with virtually no scar, and it seems a shame to spoil such a neat job! Oh well! Doubtless the repeat performance will be as fascinating as the first. I wonder if they would allow me to take in a camera? The Boss complained that she couldn't see what was going on last time! She says that a mirror would do, but I don't feel like standing there like a lemon responding to 'up a bit, left a bit' etc. Might borrow a camcorder!
Devon was wonderful, as usual. It is so laid back and unpretentious. We generally loafed about and did exactly what we pleased for a few days. Lots of fishing (Yes, the Boss got the biggest fish as usual!) and I got the strimmer out and tidied up around the lake in a pretence of being useful. The people who run the hotel/caravan site where we stay are retiring soon, and I like to do a bit to help if I can. It helps me justify eating far too much, and burns off some of the calories taken on board from the best cream tea in the country from Stoke Barton Farm, a few miles down the road from where we stay. It has to be experienced to be believed! Colin and Helen who run it are great.
It give you a flavour of the area in more than one sense!
Mind you, this does as well....
Different every time you see it.
I have to admit to a wry smile when I think about those spending the run-up to their holidays queueing at Heathrow, worrying if their flight will ever take off. Not for me, thank you! I can tolerate the M5 in most circumstances, and so far nobody has considered blowing up my ancient caravan or stopping me taking drinks on board! Enough said methinks!
Hep C wise it has been a quiet week or two. A long session in the hotel bar found me explaining the ins and outs of it to two locals. The publicity machine has a lot of work still to do, as both had hardly heard of it. You have to just keep plugging away.
The aches and pains have now set in properly at pre-treatment levels. To be honest, they don't bother me much as I've lived with them for so long. It was nice to have the break from them during treatment and for the honeymoon afterwards, but all good things come to an end. I suppose it is extra motivation to go for another course when the time is right, but that is still a long way away. Rather too long in my opinion. I need to find the time to do a bit more research.
By the way, the next meeting of the Ipswich Support Group is on Wednesday 6th September 7-8.30pm, usual venue! I'll give you a reminder nearer the time!
Sunday 30th July 2006 - Dragon Baiting.
Many years ago I attended a training course at a certain military establishment. It was a godforsaken location, and about the only amusement was the Saturday night disco at the NAAFI. The lads played a game known as 'Dragon Baiting' where groups of them threw money into a hat, and the one who 'pulled' the ugliest female won the contents of the hat! I suspect that Dragon Baiting in another context has reared its ugly head again, me being the dragon!
I can't make up my mind if the forum post that raised the subject is a serious question or just a 'wind up Martin and watch him tick' attempt. It is one of my 'bette noir' subjects - St. John's Wort. I really can't see the fascination that people have with this stuff. It is a particularly nasty poison, or to be more accurate sunlight turns it into one, and well known for its interactions with other medications. Lets face it, the last thing that anyone with Hep C should be contemplating is making the situation worse by introducing a substance with known toxicity and no proven benefit.
The really irritating thing is having to go back and dig through the research again. I have a pretty good memory for Hep C related science, having spent so long delving into it. The big problem always arises when I can pretty much quote the conclusions of a piece of research in some cases years after reading it, but can I track it down a second time?! I wish I had kept better notes at the time, but it was then purely for my own purposes and I never anticipated having to reproduce it to justify my views! Oh well! Thats life!
The Boss is progressing nicely, and still complaining that it is virtually impossible to keep a dressing on in this heat. I wonder if they use a different type in tropical locations, in which case it might be a good idea to ship some over here. Should get path lab results this week, but I will not exactly be surprised if it doesn't happen. The hospital managed to screw up last weeks appointment as she shouldn't have gone back until this coming week. It seems that the clinic is full this week, and rather than overbook as instructed by the doctor they brought the appointment forward. A complete waste of everyone's time. As usual, the admin lets the medical staff down.
I'm definitely getting the HCV joint pains back now. It is to be expected, but I was hoping for a longer 'honeymoon'. No big deal really, but it does prove beyond doubt that it is HCV related, and not arthritis or something similar. It has very little effect on me other than to make me complain when I get 'creaky'. The other symptoms of 'lack of temperature control' and tiredness are also back to some degree. Difficult to tell how much as I am doing quite a lot of physical stuff at present, and work is quite tiring and taxing. I'm still very much enjoying the challenge though, and starting to get results. It is very much 'leading edge' electronics development, and very satisfying when you get results. I must explain some of it sometime, and see if anyone can come up with some new uses for the technology! I know that highly intelligent people read this blog! All you have to do is prove it!
Sunday 23rd July 2006 - Catching up
I have been most remiss recently in that I just have not put aside the time to write. No excuses! This is a monster-blog in an attempt to catch up a bit! The difference in pace of life off-treatment and on has caught up with me, and I'm both busy and knackered!
It is getting towards holiday time, and that means getting the caravan sorted as it hasn't been touched for two years. Last year we got away for a few days to our favourite venue in North Devon but just stayed in a hotel. Frankly, the drive (325 miles) towing a caravan was more than I could take at the time. This year is different in that we plan to establish ourselves at our usual venue, and return to Suffolk after a week, leaving the caravan behind. Daughter, her 'other half' and granddaughters take it over for a week, and we slip back for a 'long weekend' and haul it back a week later. All a bit complicated, but it means that skint offspring get a holiday for virtually nothing without having to lug a 1963 vintage caravan which weighs about a ton around the countryside. If you are very good, I might make you jealous with some photo's! Devon is wonderful!
Anyway, I have to get the caravan usable, and that has taken most of last weekend and a bit of this. I still need to finish a few bits, but the bulk of the work is done. Scrubbing green mould off it in the heat was no fun, and the caravan wasn't the only thing that needed hosing down to keep cool. Like many others with the virus, the high temperatures that we are getting at present play merry hell with my constitution, although not as badly as they did before treatment. I suspect that the virus screws up the body's temperature regulating mechanism, or at least seems to.
Most of the other viral symptoms are still absent, but the occasional joint pain is now appearing, and I suspect that this may be a more regular occurance in future. Roll on the protease inhibitors. The news on that front looks good, and we may see them making it to the UK, at least on a trial basis, in the next two years. This is vastly sooner than I had expected, but the information comes from a usually reliable source. Needless to say, I will be in the queue, but not until a few others who I know have been treated. I can sit it out, wheras they do not have that luxury. I am very conscious of the fact that I am one of the lucky ones with minimal damage, and many of my friends could die if they cannot shed the virus. If the situation was such that there was a serious element of risk in the trials then I might take the view that I would be as good a candidate as any, but the protease inhibitors all appear to be side-effect free and totally safe and I can't reconcile grabbing a place that could save someone else's life. On that basis it looks as if I will be around for a while longer!
Change of subject! Much more important has been the Boss and her recent treatment. She has had a mole on her shoulder that appeared darker and more irregular than others, and appeared to have a lighter 'halo' around it. The GP took a look, and decided that a fast-track to a skin specialist at the local hospital was called for, and to cut a long story short, within a week she was operated on. It sounds a bit dramatic, but basically the surgeon took the view that absence of mole was the best approach, and a trip to day surgery resulted in the Boss being minus an eye-shaped piece of shoulder about an inch across, an inch-and-a-half long, and a quarter of an inch thick. This was done at the day surgery unit under local anaesthetic with me watching over the surgeon's shoulder. I got a ringside seat, wheras the Boss saw virtually nothing as the drapes were in the way. Whatever they pay that surgeon it isn't enough! I'm used to working with tiny electronic components, some as small as a grain of sand, but I couldn't approach the skills of that man. Awesome stuff! Anyway, the Boss is a few grams lighter, and the shoulder is healing rapidly. Needless to say, getting a dressing to stay on in this heat is damn nigh impossible, but hopefully the stitches will be trimmed tomorrow (they are dissolving types and only the ends project) and all will be well. The pathology lab at the hospital have the mole for investigation, and hopefully it will be benign. If not, it means a more major operation by a plastic surgeon to remove a larger area, and other treatment to make sure that no problems develop. Not a pleasant prospect, but not very likely, so it is fingers crossed for the time being. I did get to play house-husband a bit, which made a change, but typically she is almost back to normal, and about the only thing I'm left with is bra-fastening in the morning. (Makes a change from the opposite!)
I promised you an update on Mr. and Mrs. Blackbird and the fledglings. Well, they have left home now, although mum and dad are still around feeding themselves rather than the brood!
Mrs. Blackbird (Stumpy - No tail!) bringing lunch!
Ungrateful offspring complaining that lunch is late!
They have made quite an impression on us over the weeks. We have become quite expert in different blackbird chirps, and can usually say what is going on, when and with who just from the noises now. I should use the past tense now, as the garden is strangely quieter now the chicks have departed. We still have the usual gaggle of sparrows whirring around complaining that they can't get to the bird bath because the dog is too close for safety. They don't seem bothered about humans, but draw the line at dogs! And, of course, even in the half-dark the swallows are still around screeching and swooping.
Talking of the heat, another reason for the lack of blogging was the proverbial computer problems. Having battled with the damn thing for ages, in sheer frustration I ended up replacing most of the insides courtesy of the BBC in the form of a payment for using parts of this blog in 'Llama lashes and Grumpy Old Gits'. It seemed appropriate, in that the computer was instrumental in creating it. Anyway, it ran a lot faster but still crashed after about 20 minutes. It slowly dawned that the problem was the video card, which was one of the few bits that I did not change as I had already tried two others with the same result. It seems that there was a bad batch around which all suffered from the problem. £20 to Dabs resulted in a fix, thank God! Incidentally, of all the web-based computer suppliers I have dealt with Dabs probably rates the highest in terms of price and service.
I really should be writing about lots of other things, but I'm running out of steam. I'm not sure that is an appropriate expression bearing in mind the current temperature. At this rate everyone will be going to the Mediterranean on holiday because it is COOLER there! The heat is crippling when you want to get even the smallest job done. I'm OK at work as we have air conditioning there, but walking out of the office at the end of the day is like stepping into an oven. What has happened to all the promised thunderstorms I wonder?
The Ipswich Support Group meeting went very well apart from a car being broken into in the car park. I tend to forget that this sort of thing happens in cities, and is mercifully rare in sleepy country towns. Anyway, it was nice to have the Lincolnshire mob down for the meeting, and hopefully everyone benefitted from the experience! Next meeting looks like being in early September due to the holiday season, but I will let you know here, and on the forum.
Thats all for now!
Tuesday 27th June 2006 - Normality?
Has it really been two weeks? Well I suppose so! It is remarkable how the 'things to do' list expands to more than fill the time available. Energy seems to be no problem, but motivation is as usual. I should really be making the absolute most of this time as viral symptoms are completely absent at present. I suppose that they will creep back slowly, although I'm actually beginning to form a suspicion that many of the viral symptoms were actually a combination of alcohol and the virus, and although the virus is back, without the alcohol to help it along its effects may not be anything like as bad. I suspect it is not just the lack of alcohol that sorts the problem. It may require the virus level to be driven down to virtually zero for a while without the alcohol input so that the liver gets a chance to recover. I may just be clinging to straws, but it is still an interesting aspect to dwell on for a while.
Tomorrow should be interesting, as two mad heppers with whom I have corresponded for a while are coming down from Lincolnshire to sleepy Suffolk supposedly to attend the Ipswich Support Group meeting. In truth, I think that John and Chrissy are really just checking out that I really exist, and am not just a figment of someone's deluded imagination! They are staying overnight, (John here, Chrissy at Jane and Jo's), so passports are required, and they have been told that the local currency is sugar beet as they were under the delusion that it was turnips! I suppose I should be tidying up, as neither the Boss or I are particularly house proud. On second thoughts - perhaps not!
Talking of visitors, we have four new arrivals in residence. The ornamental arch at the entrance to our tiny courtyard garden is now home to four blackbird chicks. Mr and Mrs Blackbird totally ignore us apart from when food is in the offing. Hammering and power sanding have no effect on their visits to feed the chicks as I found when working on a windowframe. Mind you, they do get thoroughly spoilt. They are particularly partial to maggots from the local angling shop! Mrs Blackbird is a bit of an oddity in that she has no tail feathers, and has been christened 'Stumpy'. I'll get the camera out and show you sometime!
Besides the extra company, tomorrows meeting could be interesting. I'm not sure of the reaction that awaits a third-time-no-result (yet!) hepper, but we shall see! The meeting is at 7:30pm at Allington House, Woodbridge Road, Ipswich. All welcome, we hope!
Tuesday 13th June 2006 - The saga continues
Things are a little quieter now. Thank you to everyone who sent commiserations and best wishes. It is appreciated!
So the saga continues! This one looks as if it will run and run, or perhaps that is taking an unnecessarily pessimistic viewpoint. It has all produced a change in viewpoint which is a little refreshing. For rather too long my focus has been on my own treatment. Unavoidably so, as that has been the motivating factor for the last year. Now that is out of the way, hopefully I will be able to spend more time helping others and fighting Hep C on a broader basis than just my own viral load.
I suppose that I should close out the treatment episode by posting my blood figures. End of treatment ones are in brackets this time!
White cell count 5.0 (2.9)
Neutrophils 2.3 (1.0)
Hb 15.2 (11.4)
Platelets 212 (228)
ALT 44 (Was lower during treatment and mid 60's before)
As you can see, everything is back to normal apart from the rising ALT. Come to think of it, I suppose that will be normal from now! So for all the Doubting Thomas' who think post-treatment recovery takes forever, please note that at 8 weeks things are pretty much back to normal! My next appointment with 'T' is in December, and it doesn't look as if they plan on doing another biopsy until late 2007/2008, so on the personal front that is about it until then. I will ask for another viral load count then. There is a remote possibility, and I mean remote, that the virus could still clear. It has happened, but the odds are microscopic.
The other interesting point on the personal front is the alcohol issue. I currently have no plans to resume drinking and haven't had for some time. I think that this might become a fixture until I have cleared the virus. I may not be quite as strict about it as during treatment, as then I would even avoid food with alcohol in it. Obviously the quantities involved would be microscopic, but on treatment you aim for 100% and don't take any chances. Off treatment while I don't want to encourage the virus to multiply, or degrade my liver, the quantities involved are so small as to make no difference, so rum and raisin ice cream is back on the menu! Good!
The other incidental positive is the proof of the value of the 8 week post-treatment test that I harp on about. If the virus is going to come back it usually does so in the first 6 weeks, so testing at 8 is good value. In the bulk of cases it will pick up a relapse, as it did with me, and save another four months waiting for the formal SVR. Effectively it moves you forward by four months in the re-treatment queue (if such a thing existed!)
The real downer of the week is the news from Surf. I have company in the 'between treatments' department. Surf has been on Consensus interferon in an attempt to clear, and although he succeeded in getting the viral load down to very low levels it has become evident that the treatment was running out of steam, and he was not going to get a result. Another Bl***y shame, as he put up with a hell of a tough time on treatment. Consensus is non-pegylated so it means three injections per week and the side effects are more-or-less continuous. At least with the pegs there is a pattern and you get some better days. Respect Surf!
I'm now indulging in the British Standard Relapser Occupation of treatment daydreaming. It usually starts with something like 'I wonder what would happen if you used two different interferons at the same time..........' The possibilities are endless!
Monday 12th June 2006 - Back to square one!
Just a quick note to say that I have the result of the 8 week post-treatment test. The long and short of it is that the virus is back. I have relapsed. Needless to say I'm not best pleased, but coping very well! I have thought this through as those of you who read this blog regularly will realise. The situation is currently a bit chaotic as you can imagine, and there are emails and web postings everywhere. Forgive me for not saying much right now, as I need the time to let things die down a little! I'll do a proper posting soon! Lots to say, and little time as usual. I will leave you with one statement of policy. I may have lost a battle but the war is NOT OVER! Onwards and upwards!
Llama Lashes and Grumpy Old Gits
A special welcome to those of you who have found this blog from the BBC play. I hope that you enjoyed it! At the time of writing this I haven't heard it myself, but I have seen an early script which seemed very good. A big thankyou to Anne whose idea it was, and congratulations to Jonathan for a job well done.
In case anyone is still in any doubt about the title, the Llama Lashes bit refers to the fact that treatment for Hep. C occasionally causes luxuriant growth of eyelashes. Quite popular with the ladies, but yet another irritation for those who wear glasses! I claim credit for the Grumpy Old Git bit, being the inventor of the GOG index (see entry for 1/6/2005). As you will have gathered, treatment has mental side effects, and although the GOG index was a somewhat tongue-in-cheek attempt to lighten them up, it is actually used in some more serious circles. It does save an awful lot of long winded explanations.
For those new to blogs in general, they work in reverse date order, so the further down you go, the older the entry. Like a diary, you read them from the current entry backwards. You can get to other Hep C blogs from the link on the front page. With many of the blogs you can comment on the entries. This one is a bit different in that when I started I had no idea that the software to do all this was free and easily available. As a result I wrote my own, and resolved to keep it as simple as possible as the current fashion was to make sites 'pretty' and very slow for dial up users. The 'comment' facility never got added, but Email has proved very successful, so please feel free to Email your comments. You will get a reply!
The site is currently getting around 7000 'hits' per month, when my initial expectation was for a few dozen. There are some advantages to it being one persons views in that I can say whatever I like, and I am in no way pressured into any policy by any organisation unlike the official sites. I make no apologies for being critical at times. I hope that I write from the heart what I truly believe.
Keep your fingers crossed for me on the day of the play - I'm doing the post-treatment test to see if it has worked! Result in a week or so!
Thanks for reading this, and hope you enjoyed the play!
Sunday 27/05/2006 - Recovered!
Another week has gone by, most of which was boringly normal. I suppose that that in itself is an achievement, in that I'm pretty close to 100% now. To be honest, I now have no symptoms that I can attribute to either Hep C or treatment. I'm fairly unfit, but that can be attributed to a year of doing 'next to sod-all'! The odd ache or pain now is definately due to over-using muscles that have done very little recently. Mentally, the treatment memories have a little less edge, but the prospect of the forthcoming test is still in the background.
A six week recovery. Not bad going when you read the complaints from many who take months on months. To be fair, a lot have ongoing problems which are made worse by treatment and these are obviously going to take longer to resolve. I was lucky in that I started with a clean sheet. No serious damage, and little in the way of viral symptoms. Still, it sets some sort of benchmark. If a 53 year old 48 weeker can get back to full function in six weeks there is hope for everybody!
Sods Law has reared its ugly head again. I berated Chris Duncan of the FaceIt campaign for failing to let me and others know about the Cambridge event. He has let me know in reasonable time about the forthcoming Norwich one, and sure enough, I can't make either of the two days. It falls on the week where I need time off work for the radio play follow-up, and also the 8 week test. I think that trying to get the Friday off as well is pushing my luck as one of the other guys from work is off that week as well. For those who can get to it the Norwich event is on the 9th and 10th of June, and will probably be in Gentlemen's Walk or thereabouts. Anyone who can spare an hour to hand out leaflets or provide moral support to those doing so will be most welcome. Saturday I'm out of the country for the day!
Talking of the play, it looks as if I will be doing an on-line live chat session at the Hep C Trust at the broadcast time and for the rest of the afternoon. (5th June 2:15pm) It seems that Radio 4 plays get an audience of around a quarter of a million, and the BBC Action Line is going to be primed to refer callers to the Trust. I'm not sure whether to expect to be very busy, or to be bored to tears. Anybody feeling sympathetic, please line up some questions to keep me amused, and stop me making too much of a nuisance of myself at the Trust. They are a great team there. I've met some of them, and it will be nice to meet the rest.
I'm going to take the unusual step of reproducing the full text of a recent Reuters article, because I believe it is relevent, and I can't just link to it as it needs password access. (Sod the copyright issues!)
Four Million People in US Infected With Hepatitis C Virus
NEW YORK (Reuters Health) May 15 - Findings from a nationwide study suggest that 4.1 million people in the US have been infected with hepatitis C virus (HCV), most of these individuals have chronic infection. However, the current prevalence of infection, 1.6%, is actually slightly lower than a decade ago when the rate was 1.8%.
The findings are based on analysis of data for 15,079 participants in the National Health and Nutrition Examination Survey (NHANES) from 1999 to 2002. In addition to answering detailed questions about their health and lifestyles, the subjects submitted blood samples for HCV testing and liver panel analysis.
The new findings build on those from the previous NHANES, conducted between 1988 and 1994, according to the report in the Annals of Internal Medicine for May 16.
As noted, the prevalence of anti-HCV antibodies was 1.6%, and 1.3% of all subjects had chronic HCV infection, lead author Dr. Gregory L. Armstrong, from the Centers for Disease Control and Prevention in Atlanta, and colleagues note.
Subjects in their 40s had the highest prevalence of anti-HCV antibodies -- 4.3%, the researchers point out.
The biggest risk factor for HCV infection was injection drug use: nearly half of anti-HCV-positive subjects between 20 and 59 years of age reported injecting drugs. The majority of anti-HCV-positive injection drug users said they had not used drugs for at least 1 year prior to being surveyed.
Blood transfusion before 1992 and 20 or more lifetime sexual partners were also significant risk factors for HCV infection, the report indicates.
Nearly 59% of HCV RNA-positive subjects had abnormal serum ALT levels. When combined with any history of injection drug use and blood transfusion before 1992, this parameter identified 85.1% of HCV RNA-positive subjects between 20 and 59 years of age.
Besides the alarming figures, the interesting bit is the snippet at the end. I've been trying to get a reliable figure of what percentage of Hep C cases have raised ALT and AST and sure enough this supplies it. So now we know that just a plain cheap automated liver function test with no attached stigma stands a 59% chance of picking out HCV cases without any background information. Its a crying shame that most GP's are unaware of this as it represents a quick and easy route to detecting an awful lot of cases.
A big 'Hi' to BemusedBen and Jane, both from the forum. Both are settling down to treatment and doing well. All the best you two, and see you at the Ipswich Support Group if not before.
Monday 22/05/2006 - Birthday week!
It has been a week of anniversaries. The 16th was one year from my start of treatment, and also my late mother's birthday. I looked at it as a good omen at the time as somebody could be 'watching over me'! Well a year has flown by in a blur, and I'm through the treatment and mostly recovered. Something close to 'normal' now, in that I no longer have to be careful what I do in terms of physical excercise, but I haven't quite escaped the mental pressure of the forthcoming test. The 6th June still looms large! Inevitably I have had to go through the mental process of considering the consequences of a bad result. You can't block these things out, as if you try they will destroy you. Like most of the Hep C scenario the solution is to face it head on, and get it sorted. So what's the plan?
Well firstly, I am resolved not to over-react. It is no big deal. I went into this with my eyes wide open, fully aware of the odds, and a bad result is only par for the course. A setback rather than the end of the war. A necessary step on the road. I've plenty of breathing space, and the new treatments are well on the way. It would make sense to plan for a biopsy either soon or in two years (or both) to keep an eye on things. It might be worth broaching the subject of a longer treatment as an absolute fallback assuming deterioration becomes a problem. Either way, I don't see the situation as being hopeless! Anyway, look on the bright side! I might have an extra incentive to keep the blog and Hep C activity going! You may not have heard the last of me yet!
Fingers crossed the concern will be unnecessary!
Back to the original subject as the 18th was my birthday! Fifty three, or twenty one yet again. Somewhat of a contrast to last year as I was then in the throes of my first lot of Pegasys. This year was notable for the invasion of the family. Nice not to get wound up by it all as I would have done a short while ago.
Then the really important one. The Boss's birthday yesterday, (also 21 again!) and a repeat of the family invasion. We escaped for a few hours in the morning and went to the antiques fair at Newmarket Racecourse, present spotting! (Good tip gentlemen - let her choose her own! You loose the element of surprise but are guaranteed to get it right!) The present has been valued today at around ten times what was paid for it, so as I spotted it, I'm well in favour!
I'm not known for being much of a romantic, but I will say this. Without The Boss behind me I'd never have got through treatment. I still love her as much as I did when I first met her 30 years ago, and would gladly do it all again!
Still on the subject of dates, two for your diary. Firstly, the Ipswich Hep C Support Group meet on Wednesday 28th June at 7pm. Usual venue - Allington House, 427 Woodbridge Road, Ipswich, IP4 4ER. (I've even remembered to post the postcode so you can find it with Multimap!) No excuses - If I can get there during the late stages of 48 weeks treatment, so can anybody!
The other one is 5th June at 2:15pm. This is the first airing of the radio play 'Llama Lashes and Grumpy Old Gits' on BBC Radio 4. The play is built around clips from this blog and several others including such hallowed names as Ron Metcalfe, Wendy Meister, and Jonathan Colam. I have seen a draft script, and it seems very entertaining. It will be interesting to see what reaction it gets. It should also be accesible on the net for the following week at least, and I'll try and post a link to it nearer the time.
Needless to say, the following day is the PCR test, and back to the well practiced game of 'waiting for results'. Some things never change!
Saturday 13/05/2006 - Progressing!
Oops! Forgot to post last weeks blog! Sorry all! Can't blame it on brain fog nowadays!
It is strange how the pace of life slowly picks up again post-treatment. You suddenly realise that you are tired. Not the grinding boring energy-sapping kind of tired that you get with treatment. Instead it is nothing that a good night's sleep won't fix. Nice to know that when you wake up you will not still be tired, unlike a little while ago.
Another pile of Post-Its are ready for cremation. In theory, around three quarters of the ribavirin is now gone. Sounds wonderful until you stop and think that the residual effects of about 500 tablets are still to be accounted for. Looked at like that it is hardly surprising that recovery takes some time. I quite miss the regular blood tests in that I'm intensely curious as to how much the treatment anaemia and white cell/neutrophils have recovered. I don't know whether 'T' plans routine bloods as well as a PCR in June, but I may try and talk her into them. It would be very interesting to get an idea of how much the figures improve in the space of 8 weeks.
I'm fairly sure that the immune system is coming back on stream in that the skin problems have just about gone.
Finally got the news about the 'nitrites in the urine' test. Basically, a week of anti-biotics. Big deal! Slightly ironic in that the drug data sheet says don't use them if you are on anti-virals or have liver problems. Ha! Not me now, so there! Could have been interesting if the nitrites were detected while I was still on treatment. I presume that there are alternatives without this restriction!?
Old habits die hard. I read the drug data sheet like a hawk! I wonder if I will still retain my interest in things medical when my own case of Hep C is just a distant memory? I think so. There is still a major battle to fight to improve knowledge of the virus and its treatment, and I intend to be part of it. I am dreading the day when someone in trouble emails me or posts on the forum and I don't get round to answering for some minor reason. Can I live with my conscience if they fail treatment for want of a little advice? I hope not to find out.
Yes, I know it is Martin being big-headed again, but in a surprising number of cases it does make a difference. The US seems to suffer more avoidable problems than most other countries in that more or less any doctor seems prepared to treat the virus, whereas in the UK the majority of the work is done by specialist centres. In theory it should make no difference, but in practice it often does. Inexperienced doctors don't seem to be able to grasp the concept that Hep C is difficult to fix, and needs a positive determined approach from the doctors as well as the patient. You need a doctor with enough balls to put a patient through a hard time, and take calculated risks when needed because that is what it takes to get the best chance of a cure. The really worrying situation is where an inexperienced doctor panics and stops treatment for some perceived minor problem and leaves the patient with a resistant strain of virus and the memory of a tough time that will probably have to be repeated in future at a much reduced chance of a cure. Sometimes it just takes someone to say 'This doesn't sound right - get a second opinion before you stop'.
Tidying up on the computer, I looked at the history folder where I keep correspondence related to this site, both incoming and outgoing. In the last year there have been 680 emails. It didn't seem that many at the time!
Saturday 06/05/2006 - Nicely!
Doing nicely, that is! Quite a good week. Physically a lot less tired, and mentally a lot more adjusted. There is quite a step change from 'treatment mode' to normal life. After 48 weeks it takes a little adjusting to. In a lot of respects there are echoes of post-prison rehabilitation about it, in that the lifestyle change can be that great. (No, I don't have personal experience of prison! Cheeky!) It is likely to take a while longer to fully adjust, but so far so good!
I picked up on a recently published study that confirms what many have suspected. The six months post-treatment wait for SVR is excessive. Three months turns out to be adequate. It also confirms that the number of relapses after 6 weeks is only around 2%, so my choice to test at eight weeks looks sound.