update

There's nothing much to report really, I feel OK. My hair is growing back. I know someone who is having a tough time on the treatment at present, emotionally & physically. It really does seem the experience is different for everybody. I think the best approach is to hope for the best but prepare for the worst.

Life after treatment

Thankyou C. I do have a holiday booked for November which will be nice. I have enquired with my nurse about if it will be safe to drink a glass of wine, I'd really like to be able to. My hair is still thin & scraggy but is beginning to grow back. My eyebrows were affected by the treatment & grew in strange directions - I thought it was just age but as they are now going back to normal it must have been the treatment! I saw the dentist recently & he said my gums were still sensitive after the treatment, apparently it can be hard on them, & he suggested using a soft toothbrush for a few months. So if you're on treatment don't scrub your teeth madly! I've been eating like a horse (not that I didn't have a good appetite anyway but now I'm ravenous) & so, disappointingly, have been putting on weight. Generally I feel pretty much the same as I did while on the treatment (maybe slightly less tired?) & before the treatement which is to say I feel normal & not ill in any way.

results

Well I got my letter today, I'm clear of the virus at present. I am pleased obviously but feel worried about sustaining it. I think my positive feelings about reaching this milestone are dampened by feeling so worried about my eyesight problem. Also I have some difficult personal problems & stresses at present. I think I also feel a sense of disbelief that I might be one of the people who clears it. I have a blood test in November (not sure what for) & then the final virus test in February. So I just have to be patient. Anyway, what I can say is that my experience of the treatment has been absolutely fine. All aspects of it have been manageable & I've continued to lead a normal life. Based on my experience I'd encourage anyone to give it a go. There seems to be plenty of support for if it feels tough & also you're not on an unstoppable rollercoaster if it is unbearable. And you're checked at several stages so you won't be going through it if it doesn't show signs of working. Good luck to anyone out there about to start treatment. I'll post on the blog every so often & respond to any questions people may have posted to me.

Finished

I finished the treatment on Monday (4/8/08) & had my blood test on Tuesday. I will get the results in a couple of weeks to tell me if I am clear of the virus at present - I have chosen to receive them in the post. Apparently any side effects will take about a month to stop. I feel a bit flat really. I suppose it's the wait for the results but also because of feeling that there is now nothing else I can do myself. While I was on treatment at least there was something I was actively doing about getting rid of the virus. If I am clear of the virus I go back in 6 months to see if I am still clear. If I am, I'm considered cured, though there is a 1% chance it could return. I think I'd be paranoid enough to go to the GP for another test some time after that. Anyway, at the moment I just have to wait for the results in 2 weeks. I will post the outcome here.

Hi anonymous

I'm so pleased people have found the blog has given them some encouragement. The apprehension of the unknown is hard to deal with before starting treatment & it was really important to me when I heard some accounts that it could actually be ok. Up to that point all I heard was how awful it was & I visualised myself in bedridden hell for 11 months. It couldn't be more different (for me at least). I think I have appeared completely well too. I don't think anyone who didn't know I was on treatment would guess that I was. The other female members of the team where I work are mystified (& fairly jealous I think!) at how I seem to eat so much but stay slim. I'm sure they'll be pleased when I mysteriously gain weight in a few weeks! I think I've probably lost about half a stone during treatment, though my appetite has remained the same. Not much comes between me & food.
I've done my last injection now & stop the tablets next week. I'm looking forward to dying my hair & it resuming it's normal thickness as it looks pretty scraggy (anyone starting treatment don't panic - no bald patches!)

week 46

Things are much the same. I'm not itchy but am a bit tired so I take it easy & rest when I need to. I've had quite a few twinges in my liver over the last week or so which is disappointing. I know that doesn't necessarily mean it's the virus but I would feel more hopeful of success if that wasn't happening in the last weeks. I've planned a couple of trips away for when the treatment ends. I wonder if I will feel more energetic when it's finished. I'm not sure what normal is really.

Thank you anonymous for your encouragement! I've resolved to not try & do everything at work - the world won't fall apart if I don't. I have a few days off next week & had a go at belly dancing last week - the best fun I've had in ages. I also watch old Upstairs Downstairs episodes on Sunday mornings - great for de-stressing!

week 44

I'm feeling a bit stressed as my manager has gone off sick for the next few weeks & I'm going to have to manage everything at work. There is a lot going on at work & I feel tired so I'm worried about being able to care for myself properly. I want the last few weeks of treatment to go well. I'll be finished in 5 weeks.

week 40

I had my regular appointment with the nurse today - checked about the breathlessness & occasional rapid heart beats, & a tickly cough. It's apparently normal at this stage of the treatment, I don't need to see my GP & It's not causing me any problems. So it looks like the next 8 weeks should be ok. It seems to have gone so fast. I think the hardest thing has been making sure I take all the tablets & don't miss doses. On reflection setting them out in a dosette box at the beginning of the week might help rather than keeping a chart.

week 36

12 weeks left, that doesn't seem long. I've finished my NVQ which is a relief as I can relax a bit more, though I still have quite a few other things to deal with at the moment. We're still doing work on the house so it's still a bit chaotic. I've felt ok, a bit breathless sometimes. And I sometimes get a physical feeling of a build up of pressure in my head. I don't know if that's to do with treatment or the general demands of life & rushing around. I'm going to plan a holiday abroad when I've finished the treatment. I'll wait until then so I don't have to worry about taking the injections & tablets with me & all that that would entail.

Thanks Cat!

week 33

I'm quite pleased with myself as I've just done a talk at a conference on hepatitis C - to give the patients' perspective of having the virus & being on treatment. I was very nervous but it actually went very well. The conference was really interesting & it's good to know there are lots of people out there who are committed to helping people with hepatitis C. My treatment is still continuing with no problems. I had what looked like a boil on one of my injection sites - it must have been to do with an injection. I went to the doctor & got some stuff for it & it's ok now. I also had a few days of being very dizzy but it turns out that was an ear infection. I had to take a couple of days off work which was annoying but am pleased to say I've still not needed any time off due to the treatment.

update

Everything is still ok. I've had some slight twinges in my liver recently which is a bit depressing but my nurse says it doesn't mean my treatment isn't working. I've had builders, plumbers & electricians working on the house & the kitchen is in the middle of being fitted. So there has been lots of upheaval but I've found it no more difficult than anyone else would.

Halfway through

Well I've now completed 6 months. It has been absolutely fine. I have been able to carry on my life completely normally despite this treatment, it is completely different to what I had expected it would be. I think it helps that I'm quite organised so I don't find it hard to stick to routines. Also I'm able to find a positve outlook on most things. I didn't have a huge social life so I don't know how much that would have been affected by the treatment as I tend to go to bed quite early (but also get up very early for work). I do have too much on at the moment - with work on the house, working on my NVQ & excessive demands at work but I'm managing it all. Even though I can do all those things I'm worried about the strain on my health because I feel worn out (as anyone would do) so I am trying to find ways to make things a bit easier.

week 21

Nearly finished week 21. My hair has been falling out a tiny bit over the last weeks, not in clumps or anything, just more than the usual amount you lose when washing your hair. I've got plenty to last another 6 months though! My kidneys ached again recently, it seems to be linked to my menstrual cycle. And I've had occasional headaches so I've had paracetamol sometimes. I'm not sure if it's due to the treatment or other personal stresses in my life. I've not been itchy recently which is good. I've been looking into whether to have an iron supplement as I'm slightly anaemic and that isn't great for my eye condition. It's another thing to deal with - trying to balance the eye & liver treatment. My doctor & nurse for each treatment have been very helpful & supportive though which makes a big difference. I think I've been feeling a bit overwhelmed with everything going on in my life lately - I've got lots of work on the house due in the next month or so & I'm starting a fast track NVQ. I just need to take things a bit at a time. I've still been able to carry on with work normally (though it's ridiculously busy & everyone's stressed). I also went on a long weekend break - a 300 mile round trip on my own - dodging the odd flood!