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Tink's journey with Hepatitis C

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

6 Comments:

  • Hi Tink
    Thanks for you comment on my blog. I'm glad to hear that you are doing OK, its good that your PCR test was negative, congratulations. Its a bit unsettling when the hospital wants to move the goal posts isnt it? You may remember they were talking about extending my treatment to 48 weeks and I found that very unsettling especially since I was already well into counting down my 24 marbles. Only 4 months left eh? not too long to go now and you can look forward to the spring and summer next year.
    Stay well, I'll keep looking in on your blog to follow your progress.
    best wishes
    Wendy

    By Blogger Wendy, at 11:11 am  

  • Hey, you have a great blog here! I'm definitely going to bookmark you!

    I have a Health blog. It pretty much covers Dieting Health Fitness Exercise related stuff.

    Come and check it out if you get time

    By Anonymous Anonymous, at 2:21 pm  

  • Hi Tink,

    Wonderful that you are now in the final 4 month stretch! You continue to sound absolutely fabulous and I'm so pleased to hear that you've recently found increased energy. Your continued involvement in hepC awareness and education is incredibly proactive.

    Congratulations on your 6 month negative pcr! I'll also be keeping up with your blog as you complete treatment. All the best Tink,

    Sue

    By Blogger Sue, Toronto, at 4:24 pm  

  • Hi Tink
    Great news! I'm happy for you! And well done for going on with the treatment - I think it is a wise and strong decision to make.
    All the best
    Lu

    By Blogger lu, at 11:03 pm  

  • ..it was great to hear from you all - don't think I would have got this far without all the wonderful support!

    Hi Anonymous, would love to visit your site as I'm very interested in promoting the health/fitness side...keep getting the 'can't find server' msg..do you have another route?

    By Blogger Tink, at 2:45 pm  

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