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Tink's journey with Hepatitis C

Tuesday, October 25, 2005

Bad Week

I guess I've got off pretty lightly over the last 6 months, all things considering. Well, this week has more than made up for it. I have taken more paracetemol during the last 10 days than I have in the last year. I am in constant pain - sort of sciatic nerve pain but all over the body - and it has slowly got me down. I'm also now beginning to hate to take the wretched drugs because I know they are the cause of my pain. The virus has gone, my liver is normal and here I am feeling worse than ever. I can't tell you how tempting it is to jack it all in. But, I won't, I am far too stubborn!

I've slept most of the time during my tx but now I can't sleep. This isn't helping matters, I know. I am loathe to take anything - I couldn't face yet another type of drug in my system. I shall be so bloody glad when this is over.

I need something to cheer myself up - havn't the energy for the retail therapy so perhaps a banana sarni - I've become addicted to carbs which is probably my brain telling my sytem that I need more energy. I've also become addicted to Sudoku but that takes a bit longer and I need an instant fix.

At least my brain is still managing to stay alive - I even got a 'top' at bridge this week - perhaps the drugs are doing some good?

The banana sandwich calls.... bye

Tuesday, October 11, 2005

Manx Liverty Support Group

I really feel that I turned a corner during our holiday in Madeira. I can't explain it but I came home feeling so much more like my old self. Since our return, I have hardly slept during the afternoon and although I still have those days where I don't feel I have the mental or physical energy to do anything, on the whole I am much more upbeat.

I was quite busy during the International Awareness Week. It kicked off with a live radio interview on Manx Radio. I did not feel nervous and I think it came over over ok - I just spoke the way I felt so it didn't mean having to be bright or clever (which is a bit difficult for me with my current brain fog). Anyway, you can listen to the interview if you want as I've put it on our Web Site http://spaces.msn.com/members/manxlivertyhepc/. I have been busy with this too. I managed to use a 'quick and easy' front end to get us up and running and then tried to remember some of my HTML code from my IBM days. It's a start in the right direction anyway and it does give our new found group, Manx Liverty, a shop window.

I have now only got 4 months to go on tx. I forgot to mention that my PCR test done at 6 months came back 'negative' so I am still clear - yippee! I have started to think about what I'm going to do when this is all over - it seems to have taken up such a big chunk of my life that I can't remember how it felt to be 'normal' ie lead a normal life. It's amazing how these drugs effect you. The good news is that I am coming through ok, I didn't lose my hair or my appetite and I am still in one piece (as well as the rest of the family which is a complete miracle - I am not the easiest person to live with these days...)

When Prof Foster phoned me with the PCR results, he said that Roche and Schering had come up with new guidelines for Type 1, low viral load folk on tx who had showed 'clear' at 1 month and 3 months. The new guideline is that they can stop tx after 6 months. I am type 1 and had low viral load. Unfortunately, we did not do a PCR test at 1 month so won't know whether or not I was clear that early on. We had a long discussion and eventually decided that the best option would be to continue for the remainder of the year. If I took the chance and it didn't work, I don't think I could face having to start the tx again and go through another year. It's not really a problem as I was already mentally prepared for a year of tx - it was simply very tempting to be off those drugs!

I have to say that I would not have got through this without the support of my friends and family. They have been terrific. There is not a day goes by without one of them phoning to get me off my butt and out of the house - even for a coffee. Today is one of those days - the phone has just rung and I am being 'dragged' out to lunch. Better get myself sorted..... bye