42. 11 October 2013 - Two thirds through. Kidney impairment.

I finished week 32 today!

At the last lot of blood tests (Monday this week), my eGFR (estimated glomerular filtration rate), which approximates kidney function, was down one point down to 73, from 74 two weeks ago. Normal is above 90, and for the first few months of treatment, it didn't drop below 88, then suddenly it dropped to 76, 74, 73. It seems to have stabilised, so no crisis, I think.

I asked the nurse about it at the hospital. I wasn't all that convinced by her answer, but I don't think that the research has been done. She said that it was because the ribavirin had built up to such a level that my body was having trouble clearing it, and that if I had a normal liver it would clear it no problems, but because of my liver condition it can't cope with the amount of ribavirin. Well that sounds like nonsense to me since my liver had very little damage before I started treatment, my liver enzymes have shown as normal ever since I started treatment, and at an appointment I had with an osteopath a couple of weeks ago he said my liver was not inflamed at all, after giving it a good squish. And also, because in the study I found they said kidney impairment had not been a problem with dual therapy - it was a new issue with the triple therapy - so it must be something to do with the boceprevir, not just the ribavirin. So... But the bit I trusted was that she said that in their experience, they can address it by reducing someone's ribavirin dose, which I'd be fine with if it's necessary, as I'm still on 1000mg. 

She said it wasn't damaging my kidneys. But I wonder how they know? From the research I found online, kidney problems were not noted as a side effect to the boceprevir or telaprevir during the trial phase, but have been found to be a side effect now that the drugs are being used. Because it wasn't noted as a side-effect during the trials it hasn't been fully investigated and they don't have much data on it. But in the study abstract (http://www.ncbi.nlm.nih.gov/pubmed/23813604) it says that there were instances of kidney failure in the French early access program. Another thing is that it's pretty difficult to tell how damaged kidneys are from general blood tests, they normally work well until they are really quite damaged and then the function drops off quite sharply (this is my understanding - I'm not a doctor); they don't heal like livers do either.

You are going to think that I'm mad, but there's another thing that could be skewing the blood test results. eGFR, the test they use, measures the amount of creatinine in the blood. My understanding (based on wikipedia) is that creatinine is released at a fairly standard rate as a natural bi-product of normal muscle processes, creatinine is a breakdown product of creatine phosphate, which is found in muscle. So they can estimate how well your kidneys are filtering and clearing toxins by the amount of creatinine in your blood. But the calculation isn't accurate for people who have unusual muscle mass for their height, weight, age and gender - the examples given are because they are missing a limb or are suffering from a muscle wasting disease - and this is where you are going to think I'm mad; I've been doing weights a couple of times a week, the whole point of which is to cause muscle damage (by over stressing the muscle a bit) to stimulate muscle growth - so that will mean I've got more creatinine in my blood than would be expected. I asked the nurse about this. She said it "shouldn't have an impact", I think maybe she just wasn't really thinking about it in that way or prepared for the question. My eGFR results started to drop almost exactly when I started doing more weights...

Anyway - I can't do much except be as kind on my kidneys as I can be, and if it gets any worse they can address it by reducing my ribavirin dose.

So I am instigating "Operation Kidney Assist" - (I know, silly and overblown, but I find it easier to over-engage). This means:

- no vitamins or any unnecessary pills

- body brushing on my four weekly non-work days (I can't get up in time on work days)

- having hot water with a slice of lemon in first thing in the morning on non-work days

- having asparagus at least once a week

- drinking even more water, at least 3L a day

- trying to avoid sugar.

I have more blood tests in two weeks time, so I'll keep it up until then and see how it goes.

The hospital got my prescription wrong again - they hadn't prescribed me any Boceprevir, forgetting that I was a prior non-responder so should be prescribed it until week 48. It doesn't fill one with confidence. I was so tempted not to say anything - it would be lovely to stop taking them. I'm on the full dose for the duration though. Am going to do everything I can!

41. 14 September 2013 - The end of week 28 - break from blogging

It was the end of week 28 yesterday.

So far, it's going as well as can be hoped. I was still undetectable at week 24, halfway, so now it's just the long slog to the end.

I'm still neutropenic, so they've increased my Lenograstim dose to every five days, rather than once a week.

Apart from that, my blood tests are all ok. I'm a little bit anaemic, my platelets have dropped but not to dangerous levels, my liver function tests are all normal. My eGFR (kidney function) has dropped a bit, but at the moment it's not a problem.

The main battle is psychological. I am out of steam, and have difficulty motivating myself to do anything. The more I do the better I feel, but I am, more and more, acting based on emotion rather than what is rational. Rationality seems a long way away. So, I have become pretty short-term-ist - I do what needs doing that day, and what will give me instant positive feedback, otherwise I sleep.

Which is why I've not been posting here. I don't feel the need to come and express my feelings, as treatment is now mundane. I'm not frightened anymore, just tired. I get no feedback from this blog. And it's also pretty much defunct; I expect that we are the last group who will do this triple therapy; in 12 months time there will be interferon free treatment regimes. Do those instead!

A couple of things - throw out anything that you could possibly re-infect yourself from. Change your toothbrush, razors etc. regularly. In the last couple of weeks I have accidentally stabbed myself with an old craft knife and, stupidly, used an old pin to get out an ingrowing hair. I can't believe I have risked my treatment success by exposing myself to possible reinfection. If my brain worked, I wouldn't have done, but it doesn't - I live in a fog.

Secondly - exercise!

I will post again eventually, maybe when treatment is over and I know the outcome, maybe before then.

To anyone else going through this - I cyber-squeeze your hand to say yes, it's hard, you are doing so well, thank you for sharing it with me.

40. 28 July 2013 - Week 22, keeping on keeping on...

I saw my GP on Friday. The plan for keeping me going is to get some extra support, but not adjust the anti-depressants:

- 10 weeks talking therapy sessions;- set milestones and put 'rewards' in place for reaching them; 
- get a personal trainer to see once every 4 weeks, again, to help keep me motivated regarding nutrition and exercise. 

I feel it's a good plan. If it gets me through the next 10 weeks, then that's 10 more done!


Two other discoveries - putting a little bit of vaseline over the crack in my nostril is allowing it to heal, which is great as that had been sore for months. It's fine to cover your head in Aveeno moisturising lotion for itch relief. It makes pretty good conditioner.

My hgb is still 11.9 (i.e. i'm a little bit anaemic) , and my neutrophils are up to 0.85. The rest of my blood results are normal, so my meds are staying as they are. I'm still on 1000mg ribavirin and 1800mcg interferon, and taking lenograstim once a week.

I took my Boceprevir two hours late this morning. I turned my phone alarm off without waking up. So there was nearly 10 hours between two doses. It's the first time I've taken a dose late, so I think it shouldn't matter too much... nothing I can do about it now.

35. 1 June 2013 - Impatient!

On Thursday I called the nurse at the hospital to see if my viral load results were back. I knew it was much too soon - they take 2 to 4 weeks and I was calling after 4 working days - but I couldn't resist. They weren't ready, but he did confirm that the lab has the samples.

I'm finding it a struggle to muster the motivation to keep going. I don't tend to put my stickers showing I've taken my drugs doses in my diary straight away, but do them all together at the end of the day. I don't floss every single night like I used to, and my gums are getting sore again. Those are just two little examples. The regime is getting wearing. Getting the results will give me a boost, I think, if they are good.

It's been 17 months since I gave up smoking, but lately I've started to dream about smoking! It's very strange, as I haven't missed it at all, not after the first few weeks. I've got that craving feeling, that there's something I need to feel better. I suspect it's oxygen I'm missing, from the anaemia.

Yesterday was another low day. I got up late, about 10.30am. Then after spending the morning on the computer looking up properties to buy in Spain (my latest hairbrained idea) I went back to bed at about 1pm. I felt so weary, leaden, like I just wanted to be and not think. But, it didn't help. It's Mum's birthday on Tuesday so I should have been out buying her a present. The Ocado man brought the food delivery for the week, and I just put the stuff which would spoil away and left the rest in bags in the hall. I didn't wash up, didn't do a wash. And it was a beautiful day outside.

And then my honey called me and said did I want to meet and sit in the sun for half an hour on his way home from work. So we went and sat on a bench by the fountains and watched the world go by. He'd bought me a cake-sicle, a pretty sticky treat. And we chatted about nothing serious and laughed, and I was better. I feel profoundly grateful that he knows just how to cheer me up, and that I have his love.

24. 10 May 2013 - Panic! Broken fridge!

I had a complete panic today. The fridge broke! It regularly freezes up on the back wall, and you can turn it off, using the temperature dial, to defrost it. But this time when I turned it to defrost it made the wrong noise, the wrong type of clunk, and when I turned it up again it didn't come back on.

I had no idea what to do. The interferon and Lenograstim need to be refrigerated. (The Boceprevir does too, for long term storage, but it's not critical for few weeks.) I live in a rented property, so am reliant on my landlord for fixing things and replacing things, and I couldn't see it being sorted out within a few days, by which time, all the medicine would be ruined.

I called the NHS 111 number, and they recommended I leave it in my neighbour's fridge. I didn't feel comfortable with that, so I asked the local pharmacy, and they offered to store it for me. Phew. I bought a cool box, and freezer packs and a fridge thermometer, to store the doses that I need for tonight and Sunday and packed them up. The landlord was great, and offered to come round immediately to measure the space to order a new one, but them of course I had to clean it, even though it was broken, so the landlord would get a good impression. When I was cleaning I had the door open, and I think it must have got really quite warm inside, and it came back on. Yay! I think the bimetallic strip of the thermostat must have bent or deformed, but when it warmed up enough it re-set itself. And relax.

Now I have a fridge thermometer, so can tell that I'm storing the medicine at the right temperature. We also have a cool box and plenty of freezer packs, for picnics on the downs.

Talking of picnics, we had a few days picnic weather at the weekend - sunshine, and 18 - 19 degrees C, very pleasant. I used sunblock, as ribavirin and interferon make your skin more light sensitive. It irritated my rash a bit. Not a major problem, as I only have one small patch of rash, about the size of a fifty pence, on my left knee. 

No-one on the forum could recommend a rash friendly sunblock, and many seemed horrified that I would go out in the sun at all. Maybe they were on Incivek and so had to be really careful with their skin. I've been having hot baths (another apparent no-no), and since I've been using the Aveeno shower and bath oil, rather than standard bubble bath, it's been fine. I've not even been moisturising religiously. So, shopping time, for long sleeve tops and thin cotton trousers and a big floppy hat.

I am spending a lot of money on treatment related accessories; moisturiser, mouthwash, Valerian, ingredients for baking snacks to have with my Boceprevir, every day I seem to buy something. It's another way of investing in the process and getting involved, making it as comfortable as I can. And today I have really treated myself - we have a cleaner starting on Monday. I don't just want to do the treatment, work and clean this year, and getting a cleaner will mean I can spend my precious energy on what I want to do, sleep! No, I mean write...

23. 9 May 2013 - Back up to 180 mcg interferon, and my theory on disappointment

The Lenograstim is already working. I injected it on Sunday night, and my neutrophils were back up to 2.1 on Wednesday, so now I'm back on 180 mcg Interferon.

Not getting the result I wanted in my last viral load test has motivated me to make sure I'm doing everything I can, so I volunteered to go back for another full blood count blood test, to get back on the full dose of interferon as soon as possible.

I wrote my last post at a low moment, I'd just got the viral load test results back and they weren't what I wanted. I posted a moan on here and on the forums, went for a personal training session, and within an hour, was fine with it.

I like to be positive and not worry, to assume that the best will happen. I had got myself in a frame of mind where I was expecting to see "undetectable". It's a danger, that by thinking positively, I set myself up for disappointment. But, the disappointment doesn't last long, a few hours. Whereas, I feel, if I tried to prepare myself for less than ideal news, I would spend many more hours feeling low.

I've got 2 weeks to go until my 12 week viral load tests. If I don't make the cut-off, then treatment is over. No point worrying about it. I'm doing my best.

The next thing, assuming I continue on treatment, is my platelets - apparently they are falling quite quickly. They are ok at present, but if they fall much more then once again I'll be on the lower dose of interferon. My next tests are on the 20th of May, before my clinic appointment on the 21st.

19. 27 April 2013 - 8 weeks done

Yesterday was the end of week 8 of my Hep C treatment regime.

I'm feeling ok still, kind of ok, the kind of ok where you have a doctor's appointment in the morning to discuss increasing your anti-depressant dose. My head feels bleary, as my eyes are. I can't hold thoughts in the right place, they just slide off centre and fall out into the recesses of my brain before I can work with them. It's frustrating. I feel useless and like I'm always saying the wrong thing. That's pretty much the worst of it though.

I need to sleep a lot; about 10-11 hours a night to feel refreshed. Nightmares have become a regularity. One in which rats sneaked up and bit my face whenever I drifted off to sleep was a low point. I'm hoping that increasing the anti-depressant dose will at least mean that I have happier weird dreams.

I know I'd feel much better if I was sleeping more deeply, but haven't found a solution. I am sleeping, just not well.  The hospital have suggested zopiclone, but I've had it before and it made me feel worse than I feel now. Valerian helps, but I'm nervous about taking it. I looked it up on drugs.com and couldn't find an interaction with Boceprevir, Ribavirin or Interferon, so started taking it. Then I discussed it with the nurse at the hospital who pointed out that because Valerian isn't a registered medicine it won't show on the interaction databases, and the advice is not to take supplements on treatment. I'm compromising by having Valerian tea rather than the pills - as no one seems to have anything bad to say about herbal tea, only "supplements", perhaps because the active ingredients are less concentrated, or perhaps just because nobody has thought about it.

Yesterday at the gym, my 2k rowing time was about 10 mins 15 seconds - that's not far off where I was when I started, and much better than a couple of weeks ago. I had energy. I had bounce. I had joie de vivre. In my daydream interpretation of my side-effects, this is because the day before was the day when the virus died, and now my body doesn't have to deal with fighting it any more, just with the medicine.

My end of week 8 Viral Loads will support or disprove that theory. They aren't used for determining whether to continue treatment, but the FDA approved package insert shows that in the initial clinical trials, 88% of those with undetectable virus levels at week 8 went on to clear the virus, verses 43% of those where the virus was detectable at week 8. I will get my week 8 results in two to three weeks time - eek!

Other stuff which is a bit rubbish - I spend most nights in the spare bed, not snuggled up with my love. I sleep so lightly and am tossing and turning and coughing etc, that I wake him up, then he wakes me up. We both sleep better in separate beds at the moment.

I'm still severely neutropenic, and the clinic head is still putting off giving me G-CSF to stimulate my bone marrow to produce more white blood cells. Current plan, I have more blood tests on Wednesday, and if there hasn't been an improvement then I get Lenograstim.

I've also managed to persuade the nurse to give me a vitamin D test. In the end I emailed him the papers I'd found suggesting that it's important for successful treatment that your vitamin D, B and A levels are all good. Here are the studies I found:

• http://hepatitiscnewdrugs.blogspot.ca/2013/02/vitamins-magic-bullet-against-hepatitis.html
• http://www.hepctrust.org.uk/News_Resources/news/2013/April/Lo+levels+of+vit+A+and+D+associated+with+hcv+and+non+response+to+treatment
• http://www.hepctrust.org.uk/News_Resources/news/2012/January/Can+adding+vitamin+D+improve+response+to+HCV+antiviral+therapy#.UR4i5kZoNNY.blogger

Can't say I'm all that impressed with the clinic. They seem pretty average.

Tips:
- don't eat acid food (e.g. oranges, tinned peached) with your Boceprevir, take them with milk.
- exercise as much as you can;
- Aveeno bath/shower oil.

My blood test results so far

Thanks for listening. x

15. 27 March 2013 - mixed and missing blood test results

Yesterday was my second appointment with the Hep C clinic nurse, my first after starting treatment.

We started off the appointment going through the side effects. He prescribed hydrocortisone cream for my knee rash, which is already helping. He was also happy to give me some anti-memitics, in case the Boceprevir makes me sick.

After going through the side effects we had a look at my blood test results from the day before, and two weeks before. My neutrophil count fell through the floor in the last test, down to 0.41; severe neutropenia. We were both shocked. Last time I did the treatment my neutrophils stayed at around 1.3, which whilst low is fairly safe. Anything under 0.5 makes you very prone to bacterial infection. The nurse thought it might well be an anomaly in the test, but of course we don't know that, so have to assume it's accurate until the next set of blood tests are in.

This was a bit of a blow to be honest. It means that I'm going to be on a lower dose of interferon (to 135, from 180), which slightly reduces my chance of successful treatment. It's also a worry generally. Now every sniffle and graze is going to be a threat. I'd just waxed my legs that morning, which is sure way of getting spots - so now I smell of TCP. I even gargled with TCP that evening - disgusting: like washing your mouth out with soap.

On the up side, I don't have anaemia; my red blood cells have increased since I started treatment. Also, although I do need to be reasonably careful to avoid infection, from what I've found on the internet, interferon induced neutropenia doesn't seem to necessarily cause serious infections and problems: e.g. http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html. Another plus, I told the nurse that I feel that getting my blood tests regularly will motivate me, as I see them as little milestones, and he took it on I think, so hopefully he will respond in future when I ask for my results.

The next blood tests are in two weeks, and then I need to call for the results the following day. If my neutrophils have returned to a safe level the nurse will increase my interferon again.

I've bought some 1000mg vitamin C with zinc pills, and will have one every day until the tests. I'm craving fruit, and hope that I crave fruit because my body needs the vitamin C, and that taking extra will support my white blood cell count. Fishwife logic, but there isn't really a downside.

Annoyingly, the hospital lost my starting viral load tests. Nothing can be done, apparently. The sample isn't recorded as having been received by the lab, so it's not just late, it's lost. I'll have to use my viral load from the prior year as my baseline count, which was about 146,000.

I came home with a huge box of medicine, bigger than a shoe box, with the Victrelis in. I start taking it on Friday...

14. 24 March 2013 - Tough week, followed by holidays!

Last week was the toughest yet, but bearable; mainly because now I'm on holiday until after Easter! It was a hard week because I had to get all the papers ready to send out for the Assets and Finance Committee and I wasn't sleeping properly.

The ribavirin is making me agitated, which is stopping me from sleeping, even though I've been exhausted. Being both agitated and exhausted is pretty uncomfortable. Through the working day I've been confused and forgetful. I've been making little notes of what I'm doing, setting up a breadcrumb trail to keep me going the right way. Cups of tea have gone cold un-drunk, I've been dropping things, banged my head, and generally been stupid and clumsy.

Every time my boss has asked me how I'm doing I've said "I'm tired but ok". He's going to get fed up of hearing that a long time before I stop saying it.

I emailed my Hep C nurse in the week to ask for my starting viral loads and the results of last week's blood test. I also asked if it would be ok to do my week 4 viral load tests next Friday, (which is 4 weeks exactly after I started treatment), rather than tomorrow, Monday, so that it's an accurate indicator of my reaction to the interferon. He hasn't come back to me. I'm really disappointed, but not surprised. I'm seeing him on Tuesday, and I think he's got too much to do to give me that level of support. I can't be too cross;  I'm so grateful to get this medical treatment free on the NHS. They have to do a lot with the resources available. But, motivation is going to be one of the big issues on this treatment I think, and it would be motivating for me to be able to keep up to date with my test results, to monitor my progress and see how I'm doing.

By the end of last week I felt pretty low and that 48 weeks was impossibly long. Since then, being on holiday, I've been able to sleep whenever I've felt like it, and am now cheerful. I'm still going to the gym on Fridays, swimming on Sundays and yoga-ing on Mondays, which is keeping my energy levels up. My heart was doing a weird tremulous thing after swimming last Sunday though, so I did ten fewer lengths today. I've stopped drinking tea or coffee after 11.00am, which has helped a bit with in reducing the agitation.

Other side effects so far, my gums are sore, though I'm cleaning them diligently and flossing and using mouthwash. The rash on my hands has gone, the Aveeno has taken care of that, but the rash on my knees is getting worse.

I have decided on my Boceprevir routine. I'll be taking my pills at 9.30 pm; 5.30am and 1.30 pm. I've been experimenting making healthy biscuits to have with milk with my evening and night time doses. These apple and cinnamon breakfast biscuits are pretty good, especially with extra cinnamon and seeds.

This week coming up I've got the blood tests on Monday, so the results are back for my appointment at the hospital on Tuesday afternoon. On Wednesday I'm going to see a friend for lunch. Thursday, I might get my hair cut, and if the blood test clinic is shut on Friday (because of the easter bank holiday) I need to get my viral load test on Thursday too. Then on Friday I've got a personal training session at 10.

I start taking Boceprevir on Friday, which I'm very excited by. Well, it's the big thing in my life at the moment. I'm worried that it's going to make me sick though, as in vomit-y sick, especially as it will be a bank holiday weekend, so I'm not going to be able to get any help until Tuesday most likely. One of the women on the forum said she wasn't abel to keep any food down for 10 days after she started. Gurgh!
I am going to try and persuade the nurse to give me a prescription for Zofran, so I'm prepared. Are they allowed to issue pre-emptive prescriptions? I'll find out.

Other things I'd like to do this week: - plan my future over the next few years. I'm worried about having enough money to have a baby, and feel like I've been avoiding the problem as being 'too hard'. Cos it is!

Take care, have a good week.

13. 15 March 2013 - 2 weeks done & telling the team

One advantage of being a bit older doing the treatment this time is that it is flying by, along with the rest of time. A bit soon to be saying that kind of thing. But later this evening I will inject the interferon for the third time.

It's been a good week. I'd say that although I am more tired that the week before, apart from that I feel better this week: less feverish, less blue, I can concentrate better and the rash on my hands is improving.

On Monday I told the team at work about the treatment. I asked the boss to get the team together, as I want them to understand what I'm doing, especially for the days when I don't feel so hot. I told them that I was doing treatment for Hep C, a bit about the drugs, the side effects and what it entails. The Care Manager, who used to be a nurse, had some questions, which I felt was useful by immediately turning it into something that could be discussed. She asked whether it might cover my having another virus. I wonder whether she asked that because her husband is recovering from surgery, and she's concerned about catching a virus from me and taking infecting him? I told her I'd fight off any other viruses better that usual, as that's my understanding.

I thought it was best just to be straightforward about having Hep C. If I act unembarrassed about having it, I think that reduces stigma, whereas if I act ashamed, other people who know less about it than me and who have probably never thought about it before will pick up on my signals and think that the appropriate way to view Hep C is as something to be ashamed of. So, i've also been straightforward in telling the drama group the reason I've stopped going.

Last time I did the treatment I was less open. Some people found out I was doing a medical treatment, but not what for, and they were very worried about me: I assume they thought I had cancer of some kind - I wanted to avoid worrying people unnecessarily too.

Fridays are non-working days in my part-time week, and it's at the end of my treatment week too with the least effects of interferon, so I try to work out quite hard.  I did my whole usual work out, cardio and weights. I'm thinking of using my 2 kilometer rowing time as benchmark for how much energy I've got. Today it took me 10 minutes dead, which is about 10 seconds faster than last week and 20 seconds slower than my pre-treatment time. This week the whole work out felt harder though. By doing the same, I'm working harder.

I saw my GP this morning. It was a bit of a non-event as most of the side effects that I've been getting from the citalopram and the treatment have lessened. Still, it was good to check in and let her know what's going on. And they have said they want to monitor my mental state, so I am co-operating.

Then, in the afternoon, it was my second round of blood tests. Again, absolutely no drama, and no wait to go in either. I kept with the newly started tradition of coffee and cake afterwards. Then yoga nidra, put the shopping away, and it's time to make dinner already.

I'm going to try having an isotonic sports drink with my injection this evening, as it's recommended by some people on the forum. It can't hurt.

Thanks for taking the time to read this. Hope all is well with you.

12. 12 March 2013 - One bad day...

...does not a winter make. There was a blizzard in Brizzle yesterday, for all of five minutes, then the sun was out. It's cold though. Spring is a bit slow coming.

Yesterday was hard. I'd increased the SSRIs up to the 20mg standard prescribed dose, and had the same reaction as when I first started them, busy brain kept me awake from 2am. As the time ticked by I got more and more tired and grumpy and cross about being awake, which then made me more agitated and awake, the usual.

And then as it got closer to getting-up-time I started weighing up, should I go in to work or do I "feel too unwell". I hate that conundrum. If I think about it for long enough I can nearly always persuade myself that I am ill enough that it would be better that I rest, especially when I am feeling down. I really believe though that thinking that you can do it, are strong enough, are ok, are able, is important for combatting depression and lack of self-belief.

I feel that if I let myself stay at home when I feel ill, I'll be at home quite a lot, and I'll do less and feel worse. I will get behind at work and get anxious and feel like I'm not coping. I will start to think of myself as, primarily, ill. But that if I force myself into work, and think of myself as a 'fighter', not giving in, and take stubborn pride in going in every day of the treatment (if possible), however rotten I'm feeling, that I will most likely continue to function and cope, with a few days here and there of it being too much, rather than months.  Or... I'll exhaust myself.

So I dragged myself into work, feeling rubbish. As I was walking down the road (after having gone back to get my mobile phone, more incompetence) I remembered the bonhomie of my HCV support buddies and it lifted me up. I check in everyday now, just for 10 minutes or so, to catch up on how people are doing. We fight this fight together!

At work I got on with my repetitive, familiar, everyday tasks that don't require any original thought. I find that every time I switch screens, e.g. between Excel and Outlook, that I forget what I'm doing, so I found myself talking out loud (I am in an office on my own)... "come on R, what are we doing, we are looking for the payment schedule for X..." But there will be a day when I need to be able to do something which does require original thought. Oh well.

My boss told me to go home 45 mins early, before the snow recommenced and I refused. I hope that isn't going to backfire, by making him feel that his help has been rejected. I want to save going home early for week 44 of the treatment, not use it in week two.

The week before, I'd signed up for a nine week yoga course on Monday evenings. I didn't go last week because I was too busy being miserable, so really wanted to go yesterday. You miss one class, ok, you miss two it gets embarrassing and then you end up not going at all which is a waste of money. So, even though I was feeling sick, faint and shaky I went. I thought I was being stupid in pushing myself so hard - turns out not. The class was restful, just the right amount of challenging, and I felt transformed - energised and calm - afterwards.

I slept ok last night, but today, I have a brain of sludge. Or does it just feel like sludge? Maybe it works ok it just feels... it feels like yesterday I did 500 brain press-ups in the mud whilst being shouted at by a brain Sergeant Major and now it is quivering brain jelly.

11. 10 March 2013 - Second injection and starting blood test results.

The second interferon injection knocked me back a bit, more than the first one.

I did the injection on Friday evening, the same as the week before. Saturday morning I went back to bed until lunchtime. I was just leaden with tiredness.  Then in the afternoon we had a walk round the block for a bit of fresh air and stopped for coffee with and a chat A. By evening I was feeling a bit better.

The cleaning hasn't been done yet though.

My wisdom teeth are bothering me. They are quite sharp, and are rubbing the inside of my mouth, making an ulcer. They hadn't bothered me until I started the treatment. I wonder whether they are connected?

I've started taking the full 20mg dose of Citalopram, and have got a doctor's appointment next Friday to discuss them. I'm wondering whether a different variety might not make me want to eat so much.

We went swimming this morning, eventually. The AA had to come out restart the car - I'd left the interior light on all week and the battery was flat. That was another reason we didn't go to Tai Chi on Saturday morning. At the time it really upset me, especially because I couldn't lock the boot as the lock is electronic and I was worried that someone would steal the car. Then I realised they couldn't steal it as the battery was flat!  I am blaming the brain fog for my leaving the light on. I think I turned it on just as I got out of the car, thinking I was turning it off.

We were only in the pool for 25 mins before it closed for lunch, but still better than nothing. Can rest this afternoon now.

The nurse emailed through my starting blood test results. The virus load test results aren't ready, but all the rest were fine. Even my ALT level was within the normal range, if right at the top limit.

Hope all's well with you.

10. 8 March 2013 - Week 1 side effects

So that's the first week of treatment over. One week done, fortyseven to go. I'm still in the lead in phase, so just on interferon and ribavirin so far.

Side effects so far:
- generally itchy and sensitive skin, tickly face, (mild);
- rash on my hands and swollen knuckles, (mild);
- low mood and confidence, (mild to moderate on some days);
- feeling feverish and sweating more than usual, especially at night and in the gym, (again mild);
- tiredness, especially on working days when I'm out and about. By early afternoon I'm ready to go home, but have managed to fulfil my hours this mini-week, just two days nine to five., (mild so far);
- all my usual aches and pains are a bit worse, e.g. my aches in my hip and feet (poor old lady), (mild);
- difficulty concentrating! e.g. on Thursday I dated a contract 2011. Oops., (mild to moderate);
- busy brain and difficulty sleeping, (mild);
- constantly wanting to eat (I think that's the anti-depressants rather than the Hep C medication).
So, not too bad really.

The adult theatre group with the Old Vic was too much for me, sadly, and I've pulled out of the performance which is on the 28th of March. I can't imagine going on stage at the moment. I'd be frightened, and it wouldn't be fun, so I don't see the point in putting the extra pressure on myself and risk letting the group down.  I am really sad to have given it up though. It was so much fun, we laugh a lot, and I will miss all my buddies in the group. Still, I am thankful that I feel as well as I do.

Aveeno handcream is excellent. It's a medicated handcream, designed for eczema etc. It relieves the itching on my hands as soon as I put it on.

Going to the gym this morning has made me feel miles better. I was able to do almost as much as usual, say 80% effort. My mood is hugely improved. The more I did the better I felt.

Now time for a snooze...!

9. 3 March 2013 - Day 3, Feeling good

I slept straight through last night with no problems, so I'll keep taking the second dose of ribavirin in the late afternoon rather than the evening.

Yesterday I managed to do all the usual cleaning, if a bit more slowly than usual.

I had a warm bath, rather than my usual lobster boiler, and was good and moisturised afterwards as promised.

I don't even feel like I need any paracetamol this morning.

Off to meet my brother for a day in town!

8. 2 March 2013 - Fine so far

I am really pleased with how well I've felt since I took the first doses. I know it's very early yet.

The injection pen for the interferon is great! It didn't hurt at all.

I have been a bit achey. All the usual aches and pains - in my hip, in my feet - are amplified. I took a couple of ibuprofen last night as it was stopping me getting to sleep, but it's not a problem.

I woke in the night twice, and couldn't get back to sleep for a couple of hours the second time. My relaxation CDs didn't send me off as they usually do. My brain was too busy and I was hot. However, thinking about my perfect bathroom layout seemed to do the job, so I'm not that tired today as I could sleep in, it being a Saturday.

I think I will try and take the ribavirin earlier, about 4pm rather than with dinner at 7pm, as I've heard that can help with sleeping through.

Saturday mornings are Tai Chi. I went this morning as usual, and enjoyed it just as usual.

I've got enough energy to do the cleaning, sadly.

7. 1 March 2013 - First day of treatment

Today has been a bit of a non-event, after the long build up. It's 6pm and I'm yet to take any medicine.

My appointment with the nurse was at 10.30, but I didn't see him until 11.45, and didn't get out of the appointment until 12.30.

The nurse was very helpful, knowledgeable and professional, but seemed down-beat. Generally I got the impression that all is not well at the hospital, and staff are demotivated, that maybe the leadership isn't very good.

Information the nurse confirmed:

- I'll be doing 48 weeks treatment, as a prior non-responder.

- My chances of clearing the virus are about 30%.

- If the interferon freezes in the fridge I need to get it replaced (our fridge is temperamental).

- I'll be going back for more blood tests in two weeks, then for blood tests and the next clinic in three-and-a-half weeks.

- I can take up to 2000mg of paracetamol a day safely.

- They have access to a psychiatric team, if I get really depressed.

- I am likely to get brain fog, cognitive impairment, because of the interferon, which he thinks will probably effect my work.

- They don't give epoetin/procrit for managing anaemia, except as a short term rescue to allow continuation of the treatment. Generally they reduce ribavirin as a first step, because the epoetin is expensive.

- I have to be very assertive about checking that any other medicine prescribed to me whilst I'm on the treatment is not contraindicated. E.g. some antibiotics could cause serious problems when combined with Boceprevir, and not all GPs are familiar with the new drugs.  

The nurse referred me to www.drugs.com to check any interactions. I checked the contraceptive I take for endometritis, and it is contraindicated, as it might be reduced in concentration and effectiveness and might not be a reliable contraceptive. I don't think that will be an issue for the endometritis though? I'll ask my GP. I know to use two other methods of contraception to prevent pregnancy on the treatment.

The nurse threw me completely at the end of the appointment by - after we'd gone through all the medication, using the injection pen, managing side effects, the lot - bringing up the prospect of not doing the triple therapy and going on a clinical trial starting in May instead. The consultant had written a note on my file saying that I'd probably qualify and the new drug might give me a better chance of clearing the virus. The nurse also thought the trial might be a shorter treatment.  So he called the clinical research team and they weren't about, and then the clinic head, and she wasn't available, so I left the appointment not knowing whether I was going to do the treatment or not. He said to carry on as if I was, and he'd call me in the afternoon with more information on the trial.

So it was off to the pharmacy to collect my prescription of four weeks Ribavirin and Interferon; and then for blood tests.

The blood tests were much quicker than usual. Sometimes my blood is reluctant to go into the vials, but  I'd been to the gym in the morning, and took water with me and kept hydrated, and the blood tests were no trouble at all.  I didn't feel dizzy or faint afterwards either, so I'll try that again. I did go for coffee and cake after the appointment anyway though, as I had promised myself, and it's important to keep promises (any excuse for cake).

The nurse called whilst I was eating said cake, and told me the clinical trial would start in August, not May, and I might not get on it, and it might be 48 weeks treatment length anyway, so I've decided to go ahead with the current triple therapy. I've decided to assume it's going to work, with the vitamin D3 supplements as well. I'll take my first 2 Ribavirin with dinner and have my first injection this evening. I'll let you know how it goes tomorrow.

I've bought coloured stickers, to stick in my diary to keep track of every drugs dose I take. The pharmacy won't give out the weekday drug trays for Hep C treatment. Apparently the level of cognitive impairment isn't severe enough.

I've been feeling a bit feverish the past few days, like I felt when I first got Hep C. I've been wondering whether it's because of the vitamin D3, that my immune system has kicked up a gear already in fighting the virus.

Promises I have made to myself, to stick to throughout the treatment:
- I will always moisturise my skin after every bath and shower;
- I will drink at least 2.2 litres of water every day;
- I'm going to try and feel as well as I can. I'll take paracetamol, and any other palliative medicines to manage the side effects and make it as easy as possible. (Last time I was guilty of not tackling the side-effects as I felt that feeling worse meant that the treatment was working better.)
- I will body brush once a week (may help remove toxins?)