No news

Slightly disappointed about yesterday's trip to the hospital. I thought they were going to give me a viral load result from my two weeks blood test, but they did not take one! The test is clearly very expensive and they only do it when absolutely necessary. So, still no idea how the treatment is working. I can confidently say that I will know next Tuesday. The all important blood has been extracted and is laying in a lab somewhere in St Thomas's Hospital.

Hope

Well, as week four enters it's final days I am feeling hopeful. The recent blood test which revealed my baseline viral load as 1 million was good news on two accounts. When I began treatment before it was at 4 million so one assumes 1m will be easier to be rid of. Secondly 1m was the best drop that I achieved last time and I am pleased that my body was able to keep it at that level - one would normally expect it to rise back to previous levels after coming off treatment. If I do manage to knock the virus down to undetectable, this evidence implies, that it will remain there. Of course the fact remains that last time I could not get rid of that last 1m, but I think I was just exhausted by the process. This time it has not been so onerous. Naturally all hinges on my week four blood test. However I should get some kind of indication how things are going on Tuesday because I will get my week two blood test results back then and I'm hoping for a significant drop in the load. I have been pretty tired this week. Wednesday and Thursday as usual were the worst. Lots of headaches this time. I do worry that as the weeks go on there will be a culmantive effect. That happened last time. The sunny weather helped me keep a positive mood though. I'll post how it goes on Tuesday. Fingers crossed.

Week Two

I'm into my second week and feeling positive. Having read through my blog regarding the first few weeks last time, it seems the symptoms are much the same. Flu like symptoms after the interferon injection on the Tuesday night is followed mainly by a lack of appetite and lack of focus to do anything. I'm already fed up watching TV. The best thing to do seems to be to give myself some simple, short, task and then rest. I am keeping to a strict liver friendly diet for the first four weeks. I want my liver to concentrate on fighting the virus not digesting cheese and meat. I am also taking tons of minerals and vitamins to prevent all the mouth ulcers, skin rashes and hair loss that happened last time. Only time will tell if this strategy works.

Feeling Okay

It's been a year and a half since my interferon treatment ended, and I thought it was about time to report here how things are. After all there may be others out there in the blogosphere who have also found their treatment prematurely curtailed due to a poor response. Well, I can report it's not all bad. I actually feel better now than in a long time. I seem to have more energy and lucidity than before treatment. The reason for this remains a mystery to me. It would be nice to have a viral load test to see if it has remained at a lower level than before the start of treatment, but the drug companies don't seem to fund this kind of follow up, therefore the hospital won't do it. Anyway bottom line is I'm feeling okay. Sure I still need to rest some afternoons and if I get a cold or virus it really wipes me out, but otherwise I can live with it. That's not to say I wouldn't like more energy! It would be great to feel well enough to believe I could work again, but with all the things wrong with me, on top of the hep C, I never know how I am going to be one day to the next. It's very frustrating. Thankfully I have my writing. On that subject, I will have a short story appearing in the anthology HOOVERING THE ROOF 2 which will be available in November. And the first draft of 'Mr. Reed' is nearly finished. So watch this space...

Three Months Post Treatment

It is hard to believe so much time has passed. I feel guilty not keeping the blog going more regularly despite having little to say either medically or regarding Prometheus. However, there are few thing worth mentioning now.

I'll put the medical matters here and the writing ones in a separate post. I saw my liver specialist today and gained a better understanding as to where I am. He confirmed that my recent fibroscans show that I have scarring of the liver. However, combined with my normal blood results he does not feel it is severe and puts it in the 'A' category on what's called the Child Pugh score (see http://en.wikipedia.org/wiki/Child-Pugh_score).

This comes as no surprise as someone who has had Hep for 30+ years. He did say that when you get in the 'B' category they begin to consider liver transplant. I asked was this inevitable. He confirmed it was. As to how long my damaged liver will last it is clearly hard to say. He said the average would be around ten years. Perhaps if I'm lucky I'll reach 65. Then it will be time for a change of liver. I asked how long that new liver would last, again he said about ten years.

As for Hep C treatment. There is nothing they can do at present. There are new drugs coming through which should be available in three years or so, but they only have a 30 percent success rate at the moment. Will it be worth the heartache? How many more years will it really gain my worn out liver? Well I'll have to make that decision nearer the time. I was hoping for a viral load test, but he said it would not be worthwhile. Apparently the level of the Hep C virus has no bearing on the progression of the disease; unlike AIDS. This explained to me why they stopped treatment even though my viral load had dropped so much. Unless its at zero its not worth a lot apparantly.

All that said. I have to admit to feeling better than before I went on treatment. Its been years since I have had such a clear head and such sustained energy. I have to admit to being pleased. It is one of the reasons I have achieved so much with my writing recently (see next post). Of course it comes with the fear that it will not last or is an aberration. While it is here though I intend to enjoy every minute.

End of Chapter One

Well, that's it then. Treatment is over. I saw my nurse, discussed all the ins and outs and, despite my viral load steadily reducing, my Log Number was way too low. As their Hep C expert said in his email, 'continued treatment would be futile.'

Having invested so much in this process I am naturally very disappointed. I recall at the beginning of researching Prometheus the issue of false hope arose. Now I understand it more deeply. It is odd how the mind creates all these unrealistic expectations. Even since finishing treatment I have had thoughts saying, 'The viral load is really low, perhaps I can clear it completely without the drugs from here, that would be one-in-the-eye of the doctors.' I guess its good to be positive, but one wonders where madness lays.

Now, I need to be monitored to see what the long term effects of this treatment will be. At least I have learnt this form of treatment is of no benefit to me. Of course, there are rumours of new treatments coming along that may help me. I expect at some point in the not too distant future I will be going through all this again. Dare I hope for a positive outcome someday? As Chris commented, this is only success postponed. Though I am aware my age is against me.

Speaking personally, I just want to get my life back. This difficult process has made me value living much more. It is clear my health is unlikely to ever improve much. This is the fittest I will ever be, so I need to enjoy it while I can. As long as my liver holds out I am determined to experience and enjoy this world.

As for the blog, I feel this is only the end of Chapter One. I will concentrate on the development of the novel until the new treatments come along. My normal Hep C state is at least better than being on Interferon, so hopefully I should begin to write more. Completing 'Mr. Reed' and 'Prometheus' has become even more important for me. They will be something worthy of leaving behind.

To everyone who has read and commented on the blog so far. Your support has been invaluable. I cannot express how grateful I am for it. I will try to continue to make the blog of some interest to you.

May Fate be kind to you all and Evolution bless your offspring.

This is not The End my friends.

Richard

The Results

I saw my doctor this afternoon regarding the week 12 results. The news was not good. The patient has to have a 2 point reduction in what they call the Log Value. Mine was only 1.24. In addition my viral load was much the same as at week 6 - it really should be down to zero by now. This means continued treatment will probably be unsuccessful. The doctor said said he would confirm the situation after talking with the liver specialist, "as he's the expert"
Thankfully L was with me when I received this news. I put a brave face on it but as we left the hospital I felt devastated. Something in me had been convinced the time was right for treatment and that it would work.

When I got home I soon received the call. They doctors have decided to do another blood test on the 29th of December to try and discover a more definitive result. This course of action came as a surprise and I do not know if I feel happy or sad about it. Just before the call I was thinking, okay no more horrible drugs lets have a good Christmas maybe even a glass of wine.

Now I fear getting through this stage. I am what is called a slow responder. This may mean remaining on treatment for up to 72 weeks and with a reduced prospects of success. Is it worth it I ask myself.

Inside I had created this future where I would be Hep C free, renewed with energy and ready to get Mr. Reed published and work hard at being an author. Now I am faced with a very different future.

And where does this leave Prometheus? Failier was not in the script. The story can't finish after 12 weeks. He needs to be free of his suffering. As my byline says above this novel idea was meant to be a positive outcome whether treatment succeeded or not. I just never unexpected it being truncated so soon. It just does not feel right. Perhaps the gods are playing with me and there will be a happy outcome after all.



The only good thing

Twelfth Jab Of Christmas

So here I am, a quarter of the way through, I can't believe it.

Saw my nurse yesterday, she was happy with my last blood tests. Everything has stabilised and there have even been some improvements. She also took blood for my all important week 12 test. I am hoping the results will be ready next Friday (19th)when I am due to see the Doc. If my viral load is down to zero then treatment continues, if not, it is likely I will have to stop.

Though I have no scientific basis to say this, I feel its all going to be okay. It is very difficult to isolate my Hep. C symptoms from my treatment symptoms, but there are times when my brain seems to be working better than it has done for years. So I am positive. Only the lack of energy remains disabling. My appetite is far better than at the beginning - I am rarely nauseous these days.

This week has been pretty good. Though I am still sensitive to too much noise etc I am able to cope with more. Watching Heroes exhausts me though. I gather Gordon Brown watches Heroes too. Only he thinks he can save the world without saving the cheerleader.

Talking of TV. Did anyone understand the ending of Little Dorrit last night? I've never read the book and was totally confused as to what the BIG secret was.

Five days of Flu

It had to happen, I guess. Last week I mentioned my nasal passages were playing up. Well, from Thursday on I have really been laid up. All the usual flu symptoms though the worst thing was having a head on fire and being totally unable to breathe. As I am pretty anaemic already struggling for air is deeply unpleasant. Particularly when eating and trying to sleep. A sense of anxiety is always beneath the surface. The broken nights really got to me. Thankfully, last night I had a good sleep. Though my nasal passages are still dodgy I am at least able to breathe now. As I have said in the past you can never take for granted what you will be hit with next.

I know this is not very interesting but I record these things for the book's sake.

Week 10

As week nine comes to a close I can congratulate myself for enduring a fifth of my treatment. Things have certainly settled down since the beginning. My nausea is almost gone, the tiredness bottomed out, and mentally I seem to be coping. I just wish each day, each week, would be more predictable, but that now seems unlikely.

Last week I suffered with aches and pains in my bones. Very flu like. This had not been much of a problem before. The sore throat I have had for weeks is getting worse including ulcers. In fact the whole of my ears, nose and throat are unwell. I sneeze all the time. And all the nose blowing has now led to nose bleeds. All of this I can cope with if I have some energy occasionally. I have not been very good keeping up with my factor 8 injections to stop my bleeding. Not that I am doing a great deal of running around to encourage bleeds. In fact I cannot think of a single bleed since starting treatment, which has got to be good news.

The family seem to have come to terms with it all very well too. We have had our tough moments, and yet, in some strange way, the process is making us even closer.

Back To The Sea

Been a tougher week than I had hoped. After the usual bad days (Mon-Tue) I expected to bounce back. On Wednesday, though a little dazed, I did manage to do a few things. Yet since Thursday I have had precious little energy. I am sleeping a great deal. Once, I would have become negative about this, but now I see it as a potentially good thing. My body is clearly still fighting the dreaded virus.

That said, the psychological challenges are hard. As I have discussed before, not being able to 'do' gives one's ego a real bashing. No bad thing one might immediately think, but the issue goes deeper. If one does not have the energy to invest in displaying one's personality, what do you become? You are like a wave at the end of its ebb; sinking back into the sea. I wonder if this is what dying feels like?

The Purge

I have not mentioned the result of my 4 week test. My viral load has dropped from 4.6 million to 1.8 million. This is good news. The challenge now is to get it down to 0 by my 12 week test. This was one of the reasons why I was determined to up my treatment regime.


I have been wondering how the interferon actually eliminates the virus and actually gets it out of the body. I presume the virus is removed from the body either whole or broken up somehow. It makes me realise that this is a purge. Last week my nurse was saying that the virus is not just in the liver but everywhere in the body. This I suspected. This is why the treatment is so long, to ensure the interferon kills every last virus in every cell that it can, because if there is any left it will simply multiply and return. So it is clear to me that I have to help this killing and purging process. It seemed evident to me that my quest to feel “back to normal” while on the drugs was wrong thinking. The body is going into a particular “abnormal” mode, in order to eliminate the virus - as with flu. This process needs to be embraced. Also I need to aid the interferon getting to every cell of my body so it can do its stuff. This is why I must not put too much additional pressure on my liver by consuming too much crap. Keep relaxed. Do not overuse my precious energy. Exercise and massage to get the blood moving into the cells. Saunas and skin brushing to help the skin eliminate toxins. Well, that’s the idea. Lets see if my legendary procrastination will rear its ugly head.

300 days

Sounds like a long time to go, but I am trying not to think about it. Just taking each day at a time. Things have definately settled down. I am not nearly so nauseuas as in the begining. My digestion is behaving itself. And apart from the first two days after the interferon injection I have enough energy to have the semblance of a life. I seem to function in 45 minute bursts. How people go to work through treatment I cannot conceive.

I am going to France on Thursday. The break I hope will do me good. I am going with my mother and daughter. Naturally I am concerned about the strain of the travel. We are getting on Eurostar to Lille and then TGV down to Poitier. It's the noise that concerns me. At present too much noise and light can really affect me. Once at the house in France everything will be fine because the silence there is palpable. A few days looking at the river and the countryside can only do good.

Writing is slow. However, musing in my bed I have been able to clear some technical issues on both Mr. Reed and Prometheus.

Fever

Far from my afternoon bringing me peace and quiet I found last night I was in the grip of a flu like fever. Hot, shaky and headachey. I really felt like I was fighting off something. Apart from forcing down some nausea inducing weetabix I slept till 11am. Weak, fragile, relieved.

I look a little yellow as my billirubin is up. Nurse also tells me my platelets are down and I'm becoming anaemic. All things that are expected. L asked me to see the dietitian. Hoping she would put me on a liver cleanse/ no crap diet. But because I am losing weight the dietitian suggested I eat at least one pudding a day, crisps, chocolate, milky drinks and add milk powder to full fat milk! L is still reeling from the shock. Problem for me is that I don't really fancy any of it anyway.

Anyone ever read "Thomas Covenant, The Unbeliever" books? I have begun listening to the audio book of the first one; 'Lord Fouls Bane'. Thomas is a leper. The books follow his struggles in a fantasy world, called the land; which clearly represents his own body in the real world. It is all about fighting for health, and against disease. I find it odd that of all the books in the world I could have chosen this to listen to now I chose this.

I am finding it good company.

Tears in the Park

I have just come back from a walk in the local park. The sun was out, the trees were turning gold and red, people were relaxed and happy. It was good for me too. I feel more balanced.

This week something of a pattern is been established. On Monday morning, after the night's Interferon injection, I feel tired yet still capable of activity. In the afternoon I am worn out. Tuesday appears to be my worst day. I have no energy to do anything. Wednesday energies return enabling me to cope with some activity. Thursday I have more energy again.

Having said all this, the dominating factor all the time is an organic disinterest in doing anything. This is not laziness, or procrastination; both of which I am familiar. We live in a world where "doing" is valued above everything. Idleness is abhorred. For days I have had to lay here listening to my ego chastising me. Sure I know I'm on treatment and i can easily justify the situation, but something in me fears indulging the process.

On Tuesday, laying in bed, in half dreams feeling my life had been put on hold somehow, it occurred me that there were other ways to live a life than always running forward, always doing. What about just "being"? The benefit, and curse, of "doing" is that it helps you hide from yourself. This process puts you into a very intimate relationship with yourself. When you spend days doing nothing there is nowhere to hide.

This is the reason I have become tired of myself. The thought of writing about things after it being so viscerally experienced is unappealing. I am really no longer that interested in myself. There was a time when I was obsessed in knowing all about my "self". I spent thirty years in spiritual self examination trying to become something I was not. Now, I simply wish to be what I am. I'm no angel, I'm no devil, I'm just me and that will have to be good enough for the world because its good enough for me.

I did not expect this treatment to bring back this uncommfortable psychological landscape. But it appears that when the body has little energy at its disposal it will put what remains into being rather than doing every time. So I may not build any bridges over the next year, or invent a carbon-free form of transport but I will observe this wonderful world. Why that should be important? I have no idea, I only sense it is.

Today in the park I found myself in tears on a number of occasions as the poignancy of this world hit me. There was the smile of a young boy as he ran up to his dad. He was in love and in awe of his father. His father's response was so slight, just a half smile of pleasure, but behind it there was so much pride in his son. Such simple movements, such profound meanings. I was listening to my ipod and Johnny Cash came on. A track made near the end of his life. His voice was shot to hell; notes are missed and the voice breaks. Even so, it is sublime. Its the voice of a man who has lived a life and you can hear it in every shaky note. Put it together with a sunny autumn day and you have tears in the park.

A Question Of Detail

Sorry for the absence. I have found it very difficult to write anything. Apart from lethargy I have become completely disinterested in talking about myself. That make a blog like this tricky. I will expand on this later.

For now I add the following which has been in draft for sometime. Now, I see no point in polishing it and include it for completeness.

Over the past few days I have come to realise that if this blog is to perform its function I need to go into more depth. So far this has been little more than a catalogue of events. If the experience is going to truly inform the novel, or fellow Hep C suffers, it needs to scratch more than the surface. This intention, of course is easier said than done. For a start lethargy hangs like a noose around my neck. I feel thin somehow. Energy is at a premium. When I am well enough to compose my thoughts, the difficult experiences have passed into memory. That said, I am now aware of the importance of retaining in my memory what is happening to me as fully as possible. We will see what happens.

The last few days have been tough. Thursday began reasonably well. I went off to the supermarket, which is always a highlight of my week. A year ago I could barely walk. Now I have had my ankles fused I can get around without pain and it is a real pleasure.

At least it was before the treatment. Now I find my self walking around as if underwater. I appear to be slower than everyone else. I look at the quiches, unable to make up my mind which one to get or how many. Then there is the woman with a head full of cold, sneezing and coughing all over the vegetable. I can't afford to get your germs, I think. Yet she pops up in aisle after aisle like a heat seeking missile.

Then a voice shouts not far from my ear, 'Oh they've let you out then.' I turn to find its my next door neighbour. I manage to conjure up a joke, but inside I am feeling, you don't know how right you are. By the time I get to the checkout I am on borrowed time. As I wait for my turn I search for a seat. There are none. Why cant they have a small pull out seat? I curse internally. Knowing full well I am not the only person shopping who needs one.

After paying, I shakily leave the shop and go home. Wiped out I go to bed.

It is then the Ribavirin tablets start to play havoc with my digestive system. I don't think its appropriate to go into details, suffice to say, I am developing a close relationship with the WC. Since then I have hardly got out of bed. I can't be bothered to do anything. Its a dangerous scenario. Thankfully the family have been very caring and supportive. They appreciate the strain but don't allow me to dwell on things.

Missed Ribs

Till 6pm yesterday I was patting myself on the back, because I was not beset by the usual symptoms of my Sunday dose of Interferon. Gone was the overwhelming tiredness, gone was the lack of interest in the world. Chuffed was the word that came too mind. I've turned a corner I thought. Then I went to get my Ribavirin Tablets (Ribs) for my 7pm dose; I have all my doses in am-pm pots, and was presented with undeniable evidence that I had not taken my morning dose. My lack of symptoms was explained. I was crushed. It was too late too catch up the missed dose. I carried on with my normal 7pm Ribs hoping I had not done too much harm to my treatment at these crucial early stages. I suspect it quite common and not too serious. Annoying though.
Naturally, today, I have felt completely wiped with the usuals: lack of interest, sensitive to sensations, nausea.
At least I know it will improve through the week. Seeing the nurse tomorrow, I will be interested to know the results of last weeks blood tests.

S p a c e d O u t

Feeling spaced out. The sensation is similar to being on codeine. I did not get this the first week. Its not entirely unpleasant. I feel relaxed as long as I do not push myself too much. After even a little activity I get a bit shaky/jittery. As soon as I sit it passes. Headaches have diminished over the last few days. Nausea still a problem, not as bad as the beginning of the week. My only real concern is not being able to think straight. Making decisions is tricky. I can't even decide to read a book or watch tv sometimes.
I found out today YouWriteOn.com have accepted my novel, Deathless, to publish as part of a promotion they are doing. Its good news even though its only an on-demand site. But there is a little bit of editing that needs doing and I just cant get my head around it. I tinkered with the beginning recently and I just cant tell what works anymore. Still, I've got four weeks before I must send it off.
Ummm, I smell B is cooking cakes in the kitchen. I think I will have to investigate....

Why Pringles?

Here am I feeling hungry and nauseous all day and of all the food stuffs in the world to crave why is my body choosing Pringles? Sure I like Pringles, but not especially. What in them is making me crave them for breakfast? I've indulged the desire, justifying it by saying I need to keep my weight up. Clearly though it can't continue. I know when you feel ill you do desire treats but I've never needed to go out and buy two cylinders of Pringles before. I am supposed to see the hospital dietitian soon I suspect she will not approve. Still its better than alcohol.

L has a fluey cold which I suspect I'm fighting off too. I've been sneezing and have a sore throat. I expected this to happen at some point in the treatment, just not so soon. As a result everyone is rather crabby. But it will pass.

Hep C Treatment - Day 08

One week down 51 to go. Had second Interferon injection Sunday night. Spent all of Monday completely wiped out. It's not so much the lack of energy, more the complete disinterest in doing anything I find weird. The prospect of tackling any action, mental or physical was abhorrent. Even though this was the same reaction I had a week ago it still suprised me. Perhaps, because I was fortunate enough to have an active weekend.

Today I still feel lethargic. Headaches are a pain. Nausea bad. I visited my haemophilia nurse this morning. Apparrently, I've lost a kilo. So, I need to keep an eye on my food. Though I get hungry, the problem is that everything I eat makes me feel nauseus. I am going to have to find some way over this. Other than this she seems heartend by my reaction to the drugs so far.

At the end of October I am going to France for a week with my mother. I am naturally looking forward to it, but have to admit I am concerned as to wether I will be able to cope. It's another month away though and things should have stabilised by then.

As I look back on this first week I have to say I am relieved the way things have gone. I trust it will continue in this vien. I believe in a few weeks a rythmn will have been established and I can then begin to tick off the weeks. With the support of family, friends and fellow bloggers I really think I can do this thing.