Martins Blog
Sunday 29/01/2006 - Come on in!
Come on in, the water's lovely! Well maybe that's a slight exaggeration! Seriously, treatment gets a hell of a bad press. Admittedly, some of it is justified, but generally not much. My guess is that over 90% of those who have been through it would encourage others to do it. The side effects get a lot more attention than they really deserve. It is generally reckoned that about 20% of those treated get an 'easy ride' with virtually no side effects, another 20% have a tough time, and the rest are somewhere in between. It is a pity that there is no way of looking in more detail at the cases who have a rough time, as I would stake a bet that a fair percentage go through hell needlessly.
Treatment is so quirky that the importance of 'playing by the rules' is often missed, and I think that many cases that currently fall into the 'rough 20%' need not be there. If the information gleaned over the years from the experiences of those that have been through it was fed back to those just starting a lot of suffering could be avoided.
I think I'm probably fairly representative of the average case in terms of side effects. Generally they are no big deal providing you stick by the rules. Without the benefit of knowledge and experience I would definitely be in the tough 20% band judging by past experience. Anyway, the message to anybody considering treatment, is that it should hold no fears. You are likely to go through what I am, and if I can do it, so can just about anybody. It is not as black as it is painted.
Anyway, those of us who have net access are very much more likely to be informed and get necessary support than those without, which leads to the subject of support groups. These are probably the only way of reaching those without web access, and I have been helping in a small way to get a support group running at Ipswich. The first proper meeting is on the 22nd of February. By the way, the Hep C Trust have a list of support groups on their site (www.HepCuk.info) and the details of this group and many others are there. It is nice to put a bit back into helping others, and everyone who has been through, or is going through treatment should be encouraged to go to a support group. That way those new to Hep C will get an accurate idea of what treatment is like 'from the horse's mouth'! It is quite therapeutic as well. Chatting with others in the same situation seems to ease a lot of worries, and it is nice to know that you are far from unique.
Tomorrow is the start of week 38. Not much of a milestone! A sort of nondescript staging post with little to be said for it. I'm trying desperately to motivate myself to 'get going' and make some inroads into the backlog of things that I have been meaning to do for ages. I'm physically capable of doing plenty more, but actually getting started is the difficult bit. I'm carrying a lot less weight these days, and doing a bit more will improve muscle tone considerably. Job interview early next week may provide the stimulus. It looks promising, and is in a leading edge field where my skills and experience should stand me in good stead. I relish the challenge of breaking new ground and coming up with new ideas. It could be good!
Minor role reversal this weekend in that I'm doing one of my renowned Indian meals for some friends. I'm hoping that treatment hasn't messed up my taste buds too much as I'd hate to get things right by my judgement and they turn out totally wrong to everyone else's. We shall see!
Thursday 19/01/2006 - Three quarters plus
Apologies for the absence of a proper blog on Monday. Out for most of the evening, and a bit rushed to get the 'three quarters' injection done, let alone write anything. Besides crossing the 'three quarter' mark, the injection was notable in that just as I was about to insert the needle I sneezed. It was pure good fortune that the needle didn't go anywhere serious, and the situation was not improved by the 'Boss' wetting herself with laughter! The female of the species has a very strange sense of humour at times!
Tuesday was the normal Addenbrookes visit. Pure routine, but we did discuss scrapping the week 48 visit. I can do any routine blood tests by 'T' mailing the paperwork and just dropping in. Results by email as usual. This means that I can do what would be the normal end-of-treatment PCR at 8 weeks post-treatment when it should show if I'm on a winner. Better than waiting six months, but not quite as reliable. In fact about 95%. I jokingly used the term '95% Club' on the forum the other day and it seems to have stuck!
Unfortunately, I didn't manage to meet with Rick as planned, as he had a nightmare journey in due to the traffic. It was the virus fighting back in his case, as he was collecting his last meds! I'm jealous!
Anyway, the delay in blogging means that Tuesdays blood results are in. Last month's in brackets as usual.
White cell count 2.9 (3.4)
Neutrophils 0.9 (1.0)
Hb 11.4 (11.9)
Platelets 198 (184)
ALT - still normal!
Nothing very exciting here. A little down on last month's but nothing to shout about. I still think that 'T' is brilliant in getting the figures out to me so quickly. In fact, Addenbrookes Path. Lab. deserves a pat on the back as well. These bloods were taken Tuesday morning, and results with me Thursday morning, so anybody who is kept waiting for results has good reason to complain as Addenbrookes show that it can be done efficiently!
By the way, it is possible to draw graphs of blood figures in Excel (part of MS Office) and it gives a useful idea of the trends. Those with Office/Excel on their computer may like to play with producing graphs as it helps the medical professionals who generally don't have the time. The graph module in Excel is complete crap, so it is a bit of a battle to produce anything decent, but amusing all the same. Needless to say, it tries to be 'all-things-to-all-men' and fails miserably. Something a lot simpler and more controllable would have been a lot better, but unless Bill Gates gets Hep C I don't hold out much hope! Have a play with Blood Graphs. but don't take this as representative of the sort of programming quality that I normally achieve. If I get annoyed enough I'll write something decent, but in the mean time this gives a rough idea.
We often talk about 'killing the virus' and 'burying it for good'. Ever wondered what its coffin looks like? Well, it is yellow and red, made of plastic, and otherwise known as a sharps box. There is one sitting in front of me. In it right now with any luck are the last remaining virus particles that were once resident in me. While you still have the virus the contents of your own sharps box are little threat as what is in there is only what was once inside you. When you have cleared the virus the contents of the box represent a serious, possibly deadly threat, and a step change in attitude is called for. It would be rather nice to incinerate it personally when the time comes, but unfortunately it has to be done officially. Pity! It would be nice to watch the little b*****ds fry!
If you think I'm bad you should see my Granddad!
Wednesday 11/01/2006 - RTFI!
If I die suddenly and they decide to autopsy me, the letters RTFI
will be found burnt into my heart. The same applies for just about
every electronic engineer who has any dealings with the general
public. The dreaded initials appear with amazing regularity on
fault reports throughout the world. RTFI? Read The F*****g Instructions!
I blame Bill Gates for instituting a policy where proper instructions
and manuals just disappeared, and everything just got to be
'intuitive'. Roughly translated this means that you poke, prod and
mess with whatever it is until you get a result or give up and ask
someone who knows. Only sad b*****ds ever read the manual.
So what has this to do with Hep C?
Well, the drugs all come with their own little instruction sheets,
and I'll stake a small bet that very few ever bother to read them.
This much is obvious from the number of times the same issues appear
on forums. A few minutes spent reading and understanding the drug
data sheets would save an awful lot of grief.
To be fair, the manufacturers could be more helpful by stressing the
more important aspects.
Among favourite pitfalls, the issues of tablet taking come very high
on the list. Under a section containing bold lettering saying "It is
very important that you follow these instructions exactly at all times."
are the words "The tablets should be taken with food and should be
swallowed whole." Absolutely clear, you would think, but the number
of times that complaints of nausea and stomach cramps are heard is
beyond belief. The vast majority of these are due to people taking
tablets on an empty stomach. The leaflet states that the tablets are
coated, and this is done for very good reasons. Firstly, because
ribavirin tastes absolutely foul, and secondly it is very aggressive
on the stomach. The leaflet goes on to say "The tablets should be
handled with care and should not be damaged or crushed. If you have
been accidentally in touch with damaged tablets, wash all areas that
have been in contact with the content of the tablet thoroughly with
soap and water. If any powder from the tablets gets into your eyes,
rinse your eyes thoroughly with sterile water, or plain water if
sterile water is not available." From this it seems reasonable to
deduce that ribavirin is pretty nasty stuff, and should be treated
with some respect. You don't find these sorts of warning on packets
of aspirin! The advice to take it with food is not just there for
the sake of it. It is essential to stop it causing stomach problems.
Among the list of side effects is loss of appetite, and this can cause
eating with the tablets to be a bit of a struggle. Because of this
there is a temptation to snack in small quantities during the day, and
needless to say facing the prospect of evening food with tablets
becomes difficult. Far better to keep food intake during the day to a
minimum and hope to have some appetite in the evening.
On the subject of food, the manufacturers state on their published data
that a small fat content in the food can improve the absorbtion of
ribavirin by up to 70%. Needless to say, the more that is absorbed, the
less that is likely to be available to cause gut problems, and better
absorbtion may improve treatment results. Worth bearing in mind!
Because ribavirin is so aggressive on the gut in general, it may
affect the balance of bacteria normally resident in the gut.
The use of digestive supplements like Actimel may well help as at
least the GI tract is then continually fed with fresh benign bacteria to
replace any lost due to ribavirin. The same data says that antacids
reduce absorbtion by 15%, so these should be avoided.
I get a guilty conscience about ranting on about this sort of thing, but if I don't, people will suffer as they are unlikely to wade through all the info on the off chance of finding something helpful. That's my excuse and I'm sticking to it!
On a lighter note, it is coming up to week 36, the three quarter mark! Still undetectable, which is good. Only another 12 weeks to go come Monday. It still seems a long time, but assuming that nothing drastic happens I should be able to stay the course. Then there will be some serious anxiety! Will the b****y virus come back? The earliest practical time to test is around 2 months after treatment end. If it is not back then, it is 95% sure that it will stay away. The figure rises to 99% at six months. I should be over the interferon side effects by the time of the first test, and probably the bulk of the ribavirin effects, so at least I'm likely to be feeling better at the time! Fingers crossed!
Thursday 05/01/2006 - Ignorance!
I really shouldn't write here on Thursdays as they are one of the two days I am absolutely guaranteed to get wound up. Today's subject is ignorance, which is available in bulk concerning Hep C. You can understand the man in the street not knowing much as it is hardly top of his agenda (until he discovers he has it!). The medical profession and those in senior positions are another matter. The state of GP education is a national disgrace. I doubt if most GP's would be able to diagnose Hep C if they had it themselves! Come to think of it, quite a few probably do.
Getting a diagnosis from a GP is a total lottery. In theory they should all know about Hep C as they have all been sent an information pack. The chances of then actually reading it and absorbing the salient points are very small indeed, that is of course if the packs actually reached them in the first place and were not discarded as junk.
The wording of the information is such that there is no encouragement to consider Hep C as a diagnosis or a complication of any condition. From the statistics, every GP has a handful of undiagnosed cases on his books, and the guideance does not suggest how to look for them.
When a GP has a patient complaining of night sweats, trouble sleeping, aches and pains and lethargy it should ring alarm bells, but rarely does. Even if the doctor runs liver function tests and finds elevated ALT and AST it is unlikely to lead him to suspect Hep C. If we are going to make any serious progress against this virus this situation has to change.
Just about all patient records are computerised these days, so why not scan them all with program that produces a list of those with elevated ALT and AST, and give the lists to the GP with a polite note suggesting that he consider a diagnosis of Hep C in these cases? Alternatively, how about a policy that labs will automatically do a Hep C test on any sample that has high ALT/AST results? At least we would make some progress at improving the desperately poor detection rate that we have at present.
Even when a diagnosis is made the problems continue. Because Hep C is very much the Cinderella of the medical world it comes way down the queue when it comes to deciding priorities and budgets. Hep C kills more patients in Britain than AIDS, but has a fraction of the amount spent on it. The problem is getting worse, and will continue to do so. Unlike AIDS, there are at least half a million cases just waiting to come to light, and 100,000 of these will end up with liver failure and/or cancer. The really depressing part of this is that the longer the situation is left, the more will eventually die from the virus. Age and length of infection have a big bearing on the chances of a cure, and doing nothing is tantamount to condemning tens of thousands who could be saved to a slow death.
Getting the situation changed is desperately difficult as the problems are endemic in the ignorance of those who run and advise the Primary Care Trusts. The government is unlikely to do much as it uses the PCT's as a form of insulation between itself and the real world. Any problems are blamed on the PCT's who, it insists, are adequately funded and have to sort out their own priorities. Knowledge of Hep C inside the PCT's is poor and they have no concept of how much of a problem it is at present, and how big it will become if not attacked now. Consultants who specialise in Hep C are sick of going cap-in-hand to PCT's pleading for more resources as they are invariably ignored. The quality of advice given to PCT's is very much suspect as it is usually on par with the education level of the GP's, and unless some serious efforts are made to improve the situation there is little hope.
Even looking at consultant level, the quality of knowledge is very suspect in some cases. I have personally come across cases where the wrong dose of drugs have been prescribed, and the propagation of the myth that 'all interferons are the same' is beyond belief. Many cases respond better to some than others, and changing type when the current one is not working is the best hope for patients. Not telling them that 'nothing more can be done'. The major criticism that can be justifiably levelled at consultants is that they do not keep up to date. There should be a national scheme that keeps all of them up to speed with current developments, but it does not exist.
I am beginning to wonder whether Hep C treatment would be better taken out of the hands of consultants altogether with the possible exception of a small minority of complicated cases. The bulk of the work is currently done by specialist nurses, and it would make sense to elevate their status, training, (and pay!) and hand the whole area over to them. It could be a financially sound move as consultants time does not come cheap! It would be relatively easy to ensure that all specialist nurses are kept up to date, and to some extent this is already done.
In the mean time, if you want a good example of how an 'avoid the question' letter can be written, personally, specifically for you, all you have to do is to write to your PCT and ask them what progress they are making towards implementing the government's Action Plan for Hepatitis C. Mention the Freedom of Information Act of course - this means that they have to reply. You will not believe the fob-off that you receive. I have seen several, including ones to MP's and they are staggering!
Friday 30/12/2005 - Snow Joke!
Granddaughter explaining to grandad the full materials potential of this white stuff!
Well, I can't say that I am any great fan of this weather. For some reason I am feeling the cold particularly this year, and the tips of my fingers and toes suffer particularly after any exposure. Even the magic Thinsulate gloves don't seem very effective. It seems to take an age to thaw out afterwards! I suppose that it is down to reduced circulation, and that is probably the explanation for loose teeth which is another symptom recently making itself known. All part of the treatment experience!
It tends to make you feel old. I suppose the classic symptoms of ageing are where bits of the body that have behaved faultlessly for years start to play up, and clap out, and treatment side effects certainly get very close to this. The bright side is that just about all of them recover, which means that heppers get to grow old at least twice. At least I will be well prepared for the genuine article!
It is a good time to review the old year, and look forward to the new one. So lets look at the old year.
33 weeks of it have been spent on treatment, and the rest in the run-up to it, so it has been a year dominated by Hep C. Not an experience that I would recommend, but you play the cards you are dealt in this world and make the best of them. I'm now in 'survival mode' doing the absolute minimum, mainly due to lack of energy and motivation. I need to stick it out for another 15 weeks and then make a positive recovery. Previous treatments have not dragged me down this far, and take it from me there is a world of difference between 24 and 48 week durations. The second half is the tough bit and takes some fighting through. I'll get there, but I don't expect it to be a bundle of fun! There are 33 post-it notes on my study wall each carrying an injection date and week number, and I'm damned if I'm going to sacrifice all that for nothing. They are going to get ceremoniously burnt in a manner that corresponds to the half-life of ribavirin as it leaves my system after treatment, but I need to get another 15 into the collection first.
There have been lots of good bits to the year, so I must not dwell too much on the dark side. Starting treatment itself was a big milestone, and the big viral response a real bonus. The 'undetectable' results from week 20 show that my particular dose of virus is beatable, and with any luck I can look forward to a permanent cure by next Christmas.
I have learned an awful lot about the medical world in the last year. Besides a quantum leap in my knowledge of Hep C, my whole approach to things medical has changed. Although I do still hold doctors in very high esteem, I will no longer accept their decisions automatically as I would once have done. Any amount of knowledge and training does not produce an infallible ability to make correct decisions, and a well-informed layman is quite capable of providing useful input in decision making processes in a specialist field such as Hep C, particularly if the layman is the patient. Doctors in general have always enjoyed playing God, and are not used to their decisions being questioned by their peers, let alone by patients!
2005 has been notable for many heppers reaching SVR, and unfortunately a few who haven't. Paul (Overcomer) was probably the most deserving case that did not get a result, but he and others may now be close enough to the new drugs in the pipeline to get a result in future. Ron Metcalfe's hard won victory has been an inspiration to us all, and the Forum he setup has literally been a life saver. There have already been many cases of treatments being started, changed or continued because of 'peer review' via the forum. Working quietly in the background has been the Hep C Trust. Most people never get to hear of the good work they do, but when it comes to a battle they are the best allies you could wish for.
The real joy of the year has been the number of cases cured. I use the 'C' word despite the medical professions reluctance! It gladdens my heart when I hear it!
The other big bonus is the number of internet friends that exchange emails with me. It is a powerful motivation to continue, and very much appreciated.
Resolutions for 2006? Well, the blindingly obvious one to finish treatment, to continue to work to improve this site, and to battle the virus in any way I can!
Best wishes to all for a happy, healthy and successful 2006!
Martin
Monday 26/12/2005 - Boxing Day
Snatched a few quiet minutes on the computer! Joy! The Boss is watching a TV program which she knows will wind me up, so I have official permission! The 'quiet' Christmas day did not quite work out as planned, and at one point in the morning the population of our front room had risen to ten. We did actually manage a quiet evening and a lay-in this morning before an expedition to the 'in laws' for lunch. It was nearly as much havoc there!
Funny how gradual change does not get noticed. The ambiguity of the name 'granddad' came to light when two of us looked up. The Boss's dad is going to have to get used to the idea that he is great grandad now, and I have userped his old title!
It is quite remarkable how the older we get the less we are phased by babies. Great grandma was feeding the new baby without the slightest care while everybody else fussed.
Needless to say, I picked up my 18 month old granddaughter without thinking and my back is now reminding me that it was not a smart idea!
The joys of Christmas! I'm thankful that the worst of it fell on good days. If it had been on a Thursday/Friday the 'peace and goodwill' bit might have taken a bashing!
We are now battening down the hatches for the much-heralded snow that is due to start overnight. Knowing our luck, we won't get much more than a sprinkling, but of course it will cause chaos. You would expect that with the vaguearies of the British climate we would be able to cope with anything, but of course we never have any set of conditions long enough to get used to, so a few centimetres of snow will bring the entire region to a grinding halt. Oh, well. At least it is still holiday time, so most won't have to fight their way into work!
The alcohol-free aspect of Christmas has been quite interesting. By family tradition, Father Christmas has never been sober whilst delivering presents here, and on a few occasions had some difficulty with the stairs but always managed somehow! Fortunately his duties have been delegated nowadays. The Boss and I were trying to work out the last time I would have passed a breathalyser on Christmas Eve and the best estimate is 35 years ago! When we go to the pub nowadays it is purely for the social contact, which strangely enough is what was always claimed when I was drinking. It does change your views on pubs and restaurants somewhat, in that the quality of the beer becomes irrelevant compared with the other aspects. I wonder if this will continue when I am allowed to drink? I am avoiding the temptation to make any New Year's resolutions on the subject. Treatment won't finish until April, and I think that any alcohol before formal SVR is declared in October would be very unwise as it is likely to encourage the return of the virus. Another 10 'dry' months! Oh well! I suppose that my optimism should be a bit guarded in that I am far from cured yet. Getting rid of the last few virus particles that may still be lurking somewhere is the target right now, and that is the difficult bit. The odds of success look pretty good right now, but it is no certainty!
Injection time now! A rather abrupt return to normality!
Wednesday 21/12/2005 - Two Thirds + 1
'T' managed to get the blood results despite the computer problems.
Last months in brackets.
White cell count 3.4 (2.9)
Neutrophils 1.0 (0.9)
Hb 11.9 (11.0)
Platelets 184 (184)
ALT - still normal!
Well that is a nice extra Christmas present! The worrying decline seems to have reversed as all the figures are at least as good or better than last months! I put this down to the box of Thorntons presented at the time. Obviously this is an aspect of treatment that requires further exploration!
P.S. The back is a lot better today as well!
Tuesday 20/12/2005 - Two Thirds
Seasons Greetings to everyone! Lets get that bit out of the way! Saves a fortune in Christmas cards and appeals to my well known tendancy towards 'short arms and deep pockets'!
Feeling pretty useless at present, as on top of the normal 'sides' I have managed to pull a little muscle in my back. Even loafing around is painful, and today is the first time in a few days that I have managed to sit at the computer and concentrate without too much discomfort. I'm not sure exactly how I did it, but lifting a small person back into bed after she decided that 4.30am was a good time to get up the other day certainly did not help. It is difficult to be careful when you are half asleep! Judging by the odd occasion when this has happened in the past I will be fine in a few days, which is just as well with Christmas coming up. In the mean time, I'm bored and frustrated at not being able to do much, even if I could raise the enthusiasm, which is doubtful.
Usual routine appointment with Addenbrookes this morning. It is week 32, which is two thirds of the way through treatment. Usual blood tests etc, and nothing unusual to report. 'T' is doing monthly PCR's to check that I am still virus free, which is an addition to the standard protocol. I meant to ask whether this is just for re-treats or for everyone but forgot. It makes good sense, as if the virus returns there is no point in continuing treatment, and at £1000 per month for the drugs you can justify the cost of the tests easily.
Addenbrookes are struggling to cope with a partially functional appointments system due to the Hemel Hempstead fire. Whoever designed that system needs surgery with a blunt rusty knife and no anaesthetic, as it is a classic example of professional incompetance. The standard question that every computer system manager should be able to answer is 'what happens if my server is lost due to a fire?' and disaster recovery plans should have been made to have the system up and running in hours. With current technology, 'mirroring' a server on another site is easy, and would have allowed the system to continue without interruption. The knock-on effects are going to take some handling, as even getting the right patient's notes available for an appointment is not easy if you don't have the information in advance. Blood test results are also a problem, and although it is possible to phone the lab for individual cases, this is not practical for general use, so when I will get my next set is somewhat uncertain!
Hi to 'Richard the Boat' who I met in the pharmacy queue today. He is on week 40 (lucky b***er!) and doing quite well.
Talking about talking, 'breaking the ice' is always a bit difficult, as you are never sure that the person concerned wants to talk about Hep C, but current experience seems to suggest that the majority do. It continues to depress me how little the average patient is actually told about treatment, and how receptive most are to sharing information. I really pity anyone going through treatment without internet access, because their chances of getting through must be vastly reduced and the amount of needless suffering endured is frightening. I could make a good case for anyone starting treatment to be given free internet access just to ensure that they have decent support.
The issue of compliance, or adherence, surfaced again the other day. Just about all the accepted drug trials are done in the US where compliance is considered to be 80% of the medication for 80% of the time, and this is for properly conducted trials! The effects of getting this figure nearer to 100% seem to have been vastly under-estimated. This explains the poor success rates continually achieved in the US in the 'real world situation', where actual compliance is probably even less than the quoted figures, and of course the temptation to 'meddle with the medication' is stronger. Adding extra medications to treatment, both herbal and conventional, is commonplace, and the effects of alcohol and even excess fluid intake all contribute. It explains why the UK gets better results, as there is less temptation to meddle. The average UK medicine cabinet usually contains aspirin and plasters, and not a complete drugstore!
The effects are quite significant. The study I am reading at present shows that genotype 1 patients can add up to 13% to their chances of a cure just by doing what they are supposed to anyway. There is a lot of difference between a two to one chance of a cure and just 50/50.
Another oddity has shown up recently in that lab work with cannabis seems to show that its use in the absence of interferon may reduce viral load, but during treatment it may partially block the effect of interferon. Pity!
By the way, the stats for the site are very satisfying indeed! It is running at around 5,500 hits per month with visitors from Australia, United States, Czech Republic, Canada, Japan, New Zealand, France, Germany, Spain, Finland, Croatia, Israel and the Netherlands amongst others! Makes all the effort seem worthwhile! Quite a few emails too! I have a nearly 100% record of replying within 24 hours, so if you do email me you will get a reply!
Have a Merry Christmas, but be good!
Martin
Saturday 10/12/2005 - Havoc!
What a week! At the end of all this it is quite nice to sit down to some degree of normality, if such a thing is possible. It all started when 18 year old son finally decided to fly the nest. He finally managed to pair up with one of his friends and they are sharing a rather nice flat right in the town centre between them. Paperwork and keys were sorted this week, and it was full steam ahead to transfer the contents of his room to the new location. A trip to the airing cupboard to sort him out some extra bedding revealed a disaster. The coupling to the ball valve had started to leak. A tiny leak, but it had obviously been going for some time and managed to slowly saturate half the contents of the cupboard. Two spare pillows on the top shelf had completely disintegrated and were in the process of descending downwards in a soggy mess. It has taken most of the week to wash and dry what was still salvageable, and re-work the pipework and replace the valve. Great fun, but it certainly is not going to leak again! I have always been a bit suspicious of plastic fittings, and this time suspicions were justified.
I have tended to avoid my son's room like the plague over recent years, as that is much what it smelt like! Repeated shouting and swearing occasionally resulted in a 'token effort' clean-up, but that was about it. Doubtless any further action on my part would have rightly or wrongly been put down to riba rage so I tended to stay out of it. There is a fine line between allowing a young adult their private defendable space, and being nosey in more than one sense and investigating the cause. Now having got involved in the move I can understand why it stank. I will not threaten those of you of delicate sensibilities with a full graphic description, but suffice to say that had I known the full story earlier he would have been moving a long while ago without the option! Riba rage would not have come into it!
The last few days have been spent scrubbing, repairing, and painting and at least it is civilised and mostly sorted now, but not yet finished. At least the grandchildren can stay overnight now, which gives their mum a much-needed break, and us the chance to see a bit more of them. Little one is doing well, and seems very content to curl up on grandad. Big sister loves her 'new room' and proper big bed! She stayed overnight for the first time in it, and apart from wanting to get up and play with all her toys rather than sleep, was no trouble. We were greeted with a bright 'hi-ya' and a beaming smile at eight the next morning when she toddled into our bedroom. Right now I'm knackered, but it all seems worthwhile.
Hep-C-wise it has been a reasonable week, but I have had to be very careful not to do too much and pay for it later. Needless to say, the Boss has taken the brunt of it, and done far more than she should. She is amazing. Late night revellers (I hesitate to sanctify them with that description - drunken louts would be more appropriate) have made their seasonal inroads into my attempts to get to sleep at night. They have cost most of the residents of the street including me a new car wing mirror of late, as smashing a entire row appears to be the latest form of vandalism. Peace and goodwill to them too, unless I happen to catch one in the act!
Lets hope for a peaceful Sunday to get over it all!
Saturday 03/12/2005 - Decemberish!
Latest bloods are in again. Last months in brackets.
White cell count 2.9 (3.0)
Neutrophils 0.9 (1.0)
Hb 11.0 (11.0)
Platelets 184 (211)
ALT - still normal!
They also did another PCR which came back negative, so that is good news, as are most of the other figures. It is just the steady downward trend that worries me a little. There is a fair amount of 'bounce' in the figures so you can't take any particular set as gospel. When they are plotted on graphs there is a definite downward trend, albeit fairly small. The question is whether the figures will reach the critical areas before treatment end in mid-April. It could be a close run thing. Either way, if the trend is correct and doesn't flatten out then I'm in for a rougher time over the next few months.
Week 30 starts Monday night, so it is definitely on the downhill side now, and just a case of sticking it out for the duration. The main enemy right now is boredom and lethargy. At this stage of treatment all the mileposts are far apart and fairly artificial so mental targets are fairly few. Two weeks time is week 32, which is two thirds of the way there, and that will have to do for now. On the positive side, I have been virus-free for ten weeks now so that is some achievement. Thinking back, the last time I could have said that would probably be 30 years ago!
I'm fairly sure that the 'brain fog' that is associated with the virus has all gone now, as have all the miscellaneous aches and pains. I have lost quite a bit of weight without really noticing it until recently. I could certainly afford to loose it, and can probably loose a lot more with nothing other than beneficial effects. The lack of beer in the diet is probably the main factor here, as I have had no alcohol for nine months come Monday. Another incidental milestone! I am still unsure how to react when people tell me that I'm looking good!
I'm starting to have a serious battle with the 'itchy skin' side effects. I've been ignoring them up to present, and they have now got to the point of being a bit more than bl***y irritating and require some treatment. I'm getting dry itchy patches behind and inside my ears, of all places, and contact with the pillow at night seems to make them worse. The good news is that I have found the cure, totally by accident. Superdrug and Tesco do a straightforward cheap antiseptic cream (both made by the same company - J Pickles Ltd). It is based on Dibromopropamidine Isetionate, which is a bit of a mouthfull, but works brilliantly and quickly. The itch disappears in minutes. Seriously worth a try if you are suffering. I looked up the active ingredient, and it has anti-bacterial and anti-fungal properties, so it fits with the thesis that the problem may be caused by opportunistic bacteria taking advantage of a weakened immune system. I'm experimenting with Oilatum shampoo for scalp itching, but it is too early to say whether this works for me, although others have recommended it.
There is a new expression in the household which I am slowly getting used to. "The girls" are the two granddaughters, both of whom are doing well. We do see quite a lot of them as they only live a few yards away. (Who said 'too close for comfort'?!) I have a 100% record so far of making a special effort not to be 'ratty' with them even if they catch me on a bad day. The eldest is going to be an engineer. Absolutely no doubt about it. All other toys take second place to granddads nuts and bolts. Now if I could only persuede her to put them back into the boxes they came out of.......
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