HCV Positive

This blog is a journal recording my personal experiences with Hepatitis C.

Name:
Location: United Kingdom

I have hepatitis c, genotype 1b and started 48 weeks combination treatment, pegylated interferon alpha 2b and ribavirin in August 05. Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks. I am not sure at present what the future holds.

Thursday, June 16, 2005

Lull Before the Treatment

I decided to go ahead with the HIV and Hep B tests, and conveniently, this took no more than a phone call as they can use old stocks of blood to do this. The nurse tells me I should have the results in about a week. I am a little anxious.

I've been feeling quite overwhelmed since opening this blog, in a good way because it has generated a lot of support, and I am very grateful to everyone who has responded with welcoming and helpful comments, thank you all so much.

The other side of the coin is I sent myself dizzy, hopping from one blog to another and working out how to create my own, staying up late. This frazzled my brain and set the focus on me, me, me and all the health issues I seem to be juggling and sent me under for a bit.

I'm reducing my HRT at the moment and I'm like a woman on the edge, my partner would probably describe me as something like Reagan from The Exorcist, and if I heard him I'd possibly crush his nuts and eat em!

Another thing that's going on for me now is that after keeping my HCV status secret from all but family and close friends, I now find with treatment on the way, I'm having to disclose this in a larger arena for my own sanity. It has become unbearable to sit with colleagues putting plans into place for our summer activity programme knowing full well I will not be there, and that my absence may affect those plans negatively.

I recently advised my line manager that I am unlikely to be in work for the month of August as I am to undergo a 48 week course of chemotherapy but have not told her why. Of course she assumed that I had cancer which really bothered me and when I tried to steer her away from that idea, I found I was creating a bigger drama and generating intrigue.

I have now decided I will tell my line manager of my condition in order to gain her support and understanding. It will be easier dealing with other colleagues if she is helping bat away uncomfortable questions. I am also disclosing to a wider circle of friends too, I think it may be too much of a strain to stay mum during treatment.

Anyway I am going to Crete on Tuesday for a week and I'm really looking forward to stepping back from all this and just spending some lovely days and evenings. We are going to Chania, and we will be staying in an area of little fishing villages with mountains as well as beaches so I'm really happy about that. The hotel sounds lovely, its right on the beach and I'm dreaming of lazy sunny days, cosy tavernas, greek salads and gorgeously fit waiters dancing to Zorba the Greek. We have never been to Crete before so this is somewhere new for us.

Hopefully I will have the results of the HIV and Hep B test by the time I get back from holiday so I will include them in my next post.

11 Comments:

Blogger carol said...

Hi Miss Poppy,

You are being brave informing people about your condition. Most, if not all will accept you just as they always have but, be prepared for a small number not taking this route, and making life harder. It will show who your real friends are and, I hope you will be surprised how many there are. For those who are difficult, are they worth knowing? Sod 'em!
Although you don't see all of us out here on the web, you will get any help and support required, both for you and your partner, should they need it.
Have a great time on holiday, don't think too much about test results. Relax, unwind and come back and make us all very jealous! Take care,

Carol

10:49 AM  
Blogger nick said...

I think you are right to let people know about your condition, Misspoppy. Personally, I got involved with media work, partly to 'set the record straight' - I really don't know how I contracted Hep C - but also because I genuinely believe that ignorance about this must be dispelled. Even if I had made mistakes in the past, I would expect people to understand that, like any illness, it is really a matter of bad luck and youthful rebellion (or whatever).

I hope the test results prove negative, but am sure you're wise to have the tests - my attitude is, at least you know!

Hope you have a wonderful holiday - take the time to forget health matters and just enjoy yourself.

8:03 AM  
Blogger Sue, Toronto said...

Hi Miss Poppy,

Can relate to the mega-hepc focus that the blogging can lend itself to. I tend to structure things as a x2 weekly blog review - one midweek to catch up on what people are up to, another on the weekend, when I'm home and post-injection recuperative, where I'll do a weekly post and catch up with the others again. Took me awhile to come to a place that worked well for me - I can get on with my own life, but still connect with others sharing a similar experience. More than a couple of times per week just makes it all too much hepc for me. Less and I feel out of touch. Perhaps we all develop a balance that is most individually suited for us.

Coming out about hepc and treatment is difficult. There are still people in my world who are unaware of my status in this regard. However, it is less of an issue as time goes on and, I believe, my telling people has allowed them to provide me with incredible support, as well as helped to educate them about this disease and its treatment. Win-win scenarios for them and me.

Have you firmly decided to take time off from work while on treatment? Some people find that this works very well for them. For me, work has been a saving grace - allows me to focus on something other than hepc and treatment sides.

Sue

4:07 PM  
Blogger MartinB said...

Hi Miss Poppy,
I would echo Sue's views on working during treatment. A bit of focus helps, and you may be surprised how well you cope. It is certainly worth a try, and you can always change your mind. Might be worth talking to management about options to reduce your hours or workload if needed, rather than stopping altogether.
One useful little euphemism is to tell everyone that you have a liver condition. One that responds to treatment of course, but the tablets can have nasty side effects etc. It keeps wagging tongues from being a nuisance, and explains why you cannot drink alcohol, and do not feel at your best.
Best wishes,
Martin

7:58 PM  
Blogger misspoppy said...

Hi Carol,
I do feel the disclosure will be ok with the people I need to tell, and if not, like you said, sod 'em.
I told my line manager yesterday and she said she felt privileged I had told her. So good result there.
Thanks for your support.
Good wishes
Miss Poppy

8:10 PM  
Blogger misspoppy said...

Hi Nick,
I do wish there wasn't the stigma attached to hep c. If I had got the virus through a more socially acceptable route it would have been easier to disclose.
I was working in children's homes for social services when I was diagnosed and I didn't feel it was in my best interest to inform them. I'd already jumped through hoops to get the job as I'd had to disclose a possession of cannabis conviction. Besides my line manager there was an absolute tosser. Our relationship totally collapsed when I challenged him for not adhering to the national minimum standards with regard to the care of our young people.
They are massively more tolerant and understanding in the Youth Service where I am now.
I will do my best to have a wonderful holiday.
Good wishes
Miss Poppy

8:31 PM  
Blogger misspoppy said...

Hi Sue,
It does make sense to have the support of friends and I'm sure this will be forthcoming.
I have initially decided to take a month off work at the start of treatment. If I leave it open I know I will push myself to do it and could potentially create stress for myself.
I think I'll follow your lead and restrict my blogging to a couple of times a week.
Thanks for dropping by again.
Good wishes
Miss Poppy

8:40 PM  
Blogger misspoppy said...

Hi Martin,
Like I said to Sue, I plan to take the first month off to see how I go and prevent possible stress. August is one of the busiest times in my job and I need to ensure that cover is in place, otherwise the kids miss out. If I don't do this I will be under pressure to go in, and I want to avoid this until I'm sure I'll be okay.
Thanks for the tips on how to explain the condition.
Good wishes
Miss Poppy

8:46 PM  
Blogger ijaz ahmad said...

Hi Miss Poppy,

I just found your blog and read about you. i glad that you are accepting your position and your are brave enough to tell others about your position.

i making a link of your blog.

thinking of you.

all the best.

Ijaz

9:25 AM  
Blogger misspoppy said...

Hi Ijaz,
I visited your site too!
Thanks for setting up the link to mine.
I feel a bit of a lame duck for not setting up links from mine.
I will try to master this when I get back from my holiday.
Hope to chat with you again soon.
Good wishes
Miss Poppy

11:32 AM  
Blogger lu said...

Hi Misspoppy

Well done for starting to tell people about hepC. I have become increasingly comfortable about telling people - either that I have hepC or a 'liver condition' as Martin said.

The support of people on the blogs has really helped me be more OK and accepting about having hepc, and it's good to find people you feel comfortable communicating with. It is good to know we aren't alone.

Have a wonderful holiday, and enjoy those delicious greek tomatoes! They are the best!

Lu

8:44 PM  

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