31 January 2014 - Finished!

Well I did it. 48 weeks of triple therapy done.

I made it through without needing to take any sick leave. I work a three day week, I couldn't have worked full time, but three days was manageable.

My last viral load on treatment, taken at week 44, was undetectable. Still undetectable! Makes me want to do a little dance. Phew. It's all gone well.

By the end of treatment I was anaemic, neutropenic and something else who's name I can't remember.  No reason to think they shouldn't all recover now that treatment has stopped. My thyroid has made it through intact, for which I am very grateful.

I'm tired and low on energy. My motivation had got very low, I was living on ready meals and washing up twice a week by the end of treatment. I don't think I'd have managed without the anti-depressants keeping me stable.

Just the wait now - 12 weeks to find out if I'm clear. That's the end of April. Wish me luck!

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.

39. 23 July 2013 - Week 21

There haven't been any dramatic changes over the past few weeks, a gentle worsening in how I feel.

One thing, as you can tell, is that I'm much less communicative. I can't think of what to say. I feel dull. It's not a big deal, it just means that I don't really enjoy conversation or writing, it takes a lot of concentration and energy, and even then I'm not very good at it. So I'm getting so that, on balance, I tend not to call/write/speak.

Work is taking me much longer than usual, because I keep forgetting what I'm doing. And also I'm making more mistakes, because I can't hold a complex concept in my mind. So I have to work by trial and error in little pieces. Still I am making progress. I started working from home, to try and keep up. In some ways I feel useful and on top of things, and on the other I feel exhausted and overwhelmed.

There's been a heat wave here in the UK. I pretty much have to hide from the sun. Just 15 minutes strong sunlight gives me a rash, even with factor 50 suncream on. That's less time than it takes to walk to the shop back. 

I'm much less motivated now about my treatment as well. I don't keep up with my stickers, I'm into the swing of taking the medication now. So far I think I've missed a couple of Ribavirin doses, but that's it. It's just little things like; I moisturise my skin less often than before, and I don't floss my teeth everyday to keep them meticulously clean. Partly it's because I think I'm tolerating the medication a bit better, now that I'm on the Lenograstim and that's keeping up my white blood cell count (to some extent). On the other hand it's because I've lost the drive to do much really, including exercise. 

To keep me going at work during the longer days that I've been working (I'm really busy at the moment) I've been eating sweet things: biscuits, ice cream, cake. Unsurprisingly, I've put on about a stone in weight. I'm not happy about this, I feel unattractive, which isn't helping my confidence.  I am worried that my boyfriend will go off me, not because I've put on weight, but because I'm no fun. On the other hand, not feeling good in myself doesn't help. But I, so far, show no signs of tackling it. I don't want to deprive myself of one of the few things that is a pleasure that I can do.

Feeling sorry for myself? I am a bit, definitely. Just coming up to halfway, three weeks until I get there. It seems like such a long time to go till the end of February.

I'm seeing my GP on Friday, as a first step to trying to get some support in place to keep me going to the end of treatment. I'll raise it with the nurse at the hospital as well.

Something that my boyfriend suggested, which I think is a really good idea (I haven't got round to it yet) is to set up rewards for reaching certain waymarks. For example, when I get to 24 weeks, we're going out to dinner.  I think I should plan a treat for every four weeks I get through, up until the end of treatment.

I planned the start of treatment and my preparation for treatment meticulously. But I haven't planned the end of treatment, or what I'm going to do after treatment. And I think that would really motivate  If I could lay out plans fair things I want to do afterwards; reducing my antidepressant dose, starting do more exercise. And also I feel like I want a proper holiday booked for after treatment finishes. Two weeks in Spain; learning Spanish, exploring… a real adventure.

That's me. I hope you're doing well.

38. 2 July 2013 - into the twilight zone

Hi, it's been a while since I've been blogging. There have been a few reasons for this:

Firstly, it's because I've been either busy or asleep. A couple of weeks ago I had a massage, which was lovely, nurturing, but it made me feel just how tired I've got. For days afterwards I didn't feel like doing anything. And then I started to feel more ill, more down, more short of energy, which was miserable.

I don't know what happened, but something inspired me to go for a swim. It made such a difference to how I felt, that ever since I've been trying to do as much exercise as I can. It wears me out though. This is another reason I have not been been blogging. i've been too tired.

I've found the solution to the swimming rash, is to cover myself in Aveeno before I go in, and then shower twice when I get out, once with anti-chlorine wash and once with Aveeno shower oil, and then cover myself in Aveeno lotion.

I've been acting unlike me. Spending a fortune on the things that I want, rather than waiting to save up. I bought some software to learn Spanish. I've upgraded my drawing software. I'm doing the things that matter to me.

This last weekend we went to the Forest of Dean. It's just an hour's drive away from where we live, so that wasn't too stressful or tiring. We stayed in a B&B, but in a little lodge in the back garden; not much more than a bed, shower room, and a sink really, but we like to have our own front door when we go away.

On the Saturday we went cycling. We hired bikes from Pedalbikeaway, and cycled the family cycle trail round the woods. It was at such a glorious day, sunshine and a gentle breeze. It felt like the air in the woods was drinkable; cool, clear and full of oxygen.

We took it pretty easy for the weekend. Everything takes such a long time now. It took as until midday on the Friday to get packed up and out; making sure I had everything I needed: my medicine, clothes to keep the sun off my skin, sunblock, my snacks for eating with my drugs.

We cycled 16 miles on Saturday, and possibly a few more on detours when we went wrong. We weren't even cycling that slowly. All the work I've been doing in the gym, going swimming, meant that I could enjoy it. By the end of the day I was absolutely shattered though. I felt just as tired as when, many years ago, I did a sponsored 28 mile walk. But after showering, dinner and some stretching, I was okay. The next day we went to Tintern Abbey and sat in the shade and had a picnic. I was tired. I'm still tired now. But I can at least live my life, as well as do this treatment.

The second reason why this why haven't been blogging much is less positive. Everything is getting, well, weird really. When I sleep, I have strange and frightening dreams, and they follow me into the day. I feel isolated. I feel I'm never really awake, and never really asleep, I'm shifting into the twilight zone. That sounds a bit dramatic, but it is very strange feeling. I'm probably not sleeping well enough, but I'm already taking Sleepeaze two nights a week and valerian two nights a week, I don't want to take any more sleeping pills than that.

At work, I don't know how I'm doing. On the one hand, I know that personally I am doing brilliantly just to get there in the morning on time and spend the day positively working. But I seem to be completely unable to judge how much work I have got to do, whether I'm anywhere near meeting my deadlines. I just do the next task, and then at the end of the day go home. I have to blindly hope that things are going okay because my brain is so unclear, so blank, I can't see the bigger picture. But I'm also not bothered about it!

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.

34. 26 May 2013 - Swimming

Today I bought a 6 month pass for the swimming pool round the corner. It's the cheapest membership option, and you have to be a member. It feels a bit of a gamble to spend £150 on a swimming pass, as I haven't found a way to prevent the chlorine from irritating the little bit of rash I have, other than to wait a couple of weeks between swim sessions, and I don't want to risk aggravating it.

Swimming at a relaxed pace for half an hour feels so good though. It eases all my aches and pains out, and my muscles feel relaxed and heavy. Afterwards, food tastes really good too, which I don't feel often at the moment.

I tried taping over the rash using Nexcare absolute waterproof tape to keep it dry. The pharmacist thought it might work. I don't know whether it kept the rash dry, or whether it was the sticking agent, but it still made the rash worse. Next time I will just coat myself in Aveeno before I go in.

33. 24 May 2013 - The End of Week 12

I went in for my week 12 viral load blood test today. The futility rules for Boceprevir state that I need to have a viral load of less than 100 to continue on treatment. If my viral load is above 100 then I have most likely developed a variant of the virus that is resistant to Boceprevir, so there is no point in continuing. Though saying that, one of the people on the forum who is based in California had a viral load of over 1000 at week 12 and they are continuing his treatment. I think that's because his viral load has kept coming down, (he started from a very high level), so they he is just slow in responding, rather than that it isn't working.

Today I am a quarter of the way through treatment! (Or nearly finished, if treatment isn't working.)  I am trying to look on it as good news either way. Either treatment is over (yay!) or it's working (yay!).

Friday is still gym day. At the start of treatment it was taking me about 10 minutes to row 2 kilometers. Today it took 11 minutes and 20 seconds. I feel burning in my muscles on fewer reps. But so far I can still do almost as much - 18 reps rather than 20. It takes me longer and longer to warm up to, to get the blood moving round my body. Once I have done though, when I'm warm and have broken a sweat, and my pulse is above 120, I am suddenly full of energy and go. After the gym I felt tired and well. Since I'm tired all the time, it's good to feel tired and well.

31. 20 May 2013 - a horrid, horrid feeling...

Last night, when we got back from the weekend away for the wedding I realised that I was a day late replying to another wedding invitation, so I rushed to email "yes please!".

At about 2.30 this morning, I woke with the realisation that I had started my email "Dear J and Zoe", but that the bride's name was Zebe. I'm friends with the groom, and have not met the bride to speak to, but still!

I tried to think of a way to make it ok. That maybe if I explained about the treatment, but it's so intangible. I can't prove it's the treatment making me stupid, and not that I just don't care whether or not I get the bride's name right. Oh horrors.

So, today I sat down to write my grovelling email. But just before I did thought I'd double check... The bride's name is Zoe! Sometime's its so good to discover there was nothing wrong, except you are paranoid.

30. 19 May 2013 - 3 invalids

Sunday, I remember as blissful. I slept late. Mum brought Granny over. Us three invalids, Dad, Granny and I, sat in the garden chatting, watching the birds and looking at the flowers. Then lunch, and a very short walk, followed by cake.

It was only intermittently sunny, and not all that hot. I had a long sleeved t-shirt on and jeans and a warm cardigan. I burnt a bit on my neck though, oops, and it is itchy and looks like it might develop into rash. I had meant to get some sunblock...

29. 18 May 2013 - The wedding

L & J's wedding was on J's farm, which is a couple of miles from Mum and Dad's, where I was staying. J is a friend from school and part of the group of friends I hung around with for years in London, so the people at the wedding were some of my favourite people.

It was such a joy to be there and watch their eyes as they made their vows to each other. So precious. I felt full up with happiness, my heart bursting with it. And then all day, everywhere I looked there was someone I wanted to hug and catch up with and talk to. I talked and laughed until I was croaky.

It felt so right us being together. It's been years really, but felt like no time at all, like bumping into them was the normal way of things. The posse has dispersed as people have moved out of London to have families, or for an easier way of life (me). It was a bit awkward introducing A. to everyone, because brain fog struck and hid the names from me, not so I couldn't find them, but so I was not fluent. I called Leah Leanne, I had to work round to Steve so I had time to find his name. People who are dear to me and I've known for years. Brain betrayal.

I kept it as low key and stress free as I could. I wore a dress that I'd already got; and, when I was ironing it and found that it had stains on it, I didn't fret, I managed to convince myself that no-one would notice, and I was going and that was the main thing. I was too tired to be irrational - bonus!

I hadn't said to L&J that I'm on the treatment, as I didn't want to make a fuss, but I did say when I went, as there was going to be a bonfire and camping, so I had to give a reason for sloping off at half nine. Good eggs that they are it was all, all, good.

28. 17 May 2013 (2) A long drive

We didn't set off from Bristol until 7.20pm, and it was 10pm by the time I arrived at Mum and Dad's.

It was my fault we left so late, as I did the classic thing of telling my boyfriend the opposite of what I meant. I meant, I'm exhausted and stressed, please would you help me get us on the road as soon as possible. What I said was, "I've just got back from the gym, and still need to shower and pack, so there's no mad rush, so have whatever you want for dinner honey." A. and I generally have fajitas on a Friday, and it's one of his favourite meals, so that's what he cooked and it takes a while.

Driving was a strange experience. I simultaneously felt free, light and in control; and exhausted, like I was keeping going by force of concentration and my grip on the steering wheel. The tiredness of treatment is not like normal tiredness. It's similar: I want to lie down and go to sleep and the sleep makes me rested; but the more I do the less tired I am and the brighter and more awake I feel.

Keeping going when I wanted to stop, keeping driving, made me feverish, croaky, bunged up, deaf, and generally flu-y, but less depressed and demotivated. I got there! I did it. And really there were only a couple of moments when I noticed my driving was a bit off: pulling away from a roundabout I took an angle closer to the curb than I would normally; and every now and then I couldn't remember how far along the (very familiar) route I was.

Mum and Dad welcomed me in and we were up chatting until 11.30pm. Dad's been ill recently, so we were comparing notes and pills. I was so pleased to be there, and not to have to miss out on it because of the treatment.

26. 14 May 2013 - An unpleasant development

On Sunday night I broke my rules, and had fruit with my Boceprevir. I stewed some apples with berries for pudding, and took my pills with it. Mistake! Ever since I have had a delicate stomach, and, blurgh - diarrhoea.

There's something undermining about having to worry about making it to the loo in time at 36 years of age. I'm going to a wedding on Saturday. I really hope I don't have to make a run for it in the middle of the ceremony. Hopefully, the nurse will have got back to me with a remedy before then.

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.

22. 7 May 2013 - Week 8 virus load results - so/so

Here are my week 8 VL results: 118 IU/ml.

I am dissappointed. More than I should be really. I was so hoping for undetectable.

I feel like I can do this, so long as it is working, but if it's not...

I am fed up of getting up in the night to take medication. I'm fed up of being tired all the time, and my ears being blocked, and my nose running. I find it hard to believe that I could be doing this for another 38 weeks, and it still not work.

And my boyfriend is really struggling with his mood at the moment and is hardly speaking. I feel insecure, on edge, and pissed off. Woohoo!

On the upside, the Lenograstim injection was fine, once I got my head round the IKEA like self-assembly instructions for the injection.

I'm going to have a full blood count done tomorrow, and if my neutrophils have recovered enough will be back up to 180mcg of interferon. Might as well throw everything at it.

21. 3 May 2013 - Lenograstim

My neutrophils were back down to 0.41 on Wednesday, so I now have Lenograstim. It comes as a kit! With a powder and water you have to mix and two syringes. I wasn't expecting that. The pharmacist took me through it at the hospital. How wrong can I go?!?

On the forum, I was advised not to inject myself with the G-CSF and Interferon on the same day, as it will knock me for six, so I'm going to wait until Monday to try it.

Cor I'm tired today. Today is usually my good day, Friday, just before the injection. Every week so far I've managed to go to the gym on Friday. Not today though.

I've been running around all day. The car battery was flat so I had to get the AA to take me to the garage for the car service and MOT, then I had an appointment, the a half hour walk back and waiting ages to pick the car up and drive home. Then a walk to the hospital to pick up my new prescription. Is it bed time yet? Little moans. All is well.

My GP has put my anti-depressant dose up, and I think that's helping my concentration and mood, so work's a bit easier.

Off to steam my head now! (I feel it really helps clear the nasty dried mucous that fills my ears, sinuses and chest.)

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

18. 12 April 2013 - Week 4 Viral loads and end of week 6

My week 6 blood test results from Tuesday were a little bit better than my week 4 results. They showed that I'm still neutropenic, but less so, and the clinic head has decided that for the moment we'll keep going as we are.

At week 4 my neutrophil count had dropped to 0.41, and the nurse had reduced the Interferon dose from 180mg to 135 mg. At week 6 it had increased to 0.51.

I'd emailed the nurse, hoping that they would give me G-CSF and put me back onto 180mg of interferon. I was concerned that as I hadn't been responsive to interferon the first time I did treatment, that reducing the dose would impact on my chances of the holy grail of treatment, Sustained Virological Response, or, SVR. I've been feeling a bit more poorly as well, with a runny nose and a sore throat and blocked sinuses. I hoped that with Neupogen I might feel better.

After talking to the clinic head yesterday, the nurse told me this morning that there would be no change to my medicine at the moment.  The clinic head had seen some research (I should have asked for a reference but didn't think) to show that the dosing of interferon was much less important with triple therapy than the old standard of care treatment, and so that reducing my interferon dose to 135mg would have little impact on my changes of cure.

Their "threshold" level for when to act on a low neutrophil count is 0.5, so this week I just came above the threshold. If my neutrophils drop below 0.5 then they will give me G-CSF rather than reduce my interferon dose any more. If it goes above 0.6 then I'll be put back on 180mg.

I wonder whether the timing of the test has any impact. Apparently neutrophils only live 3 days. I have my injections on Friday, so would probably be producing fewest neutrophils on Saturday, Sunday and Monday, and so have fewest on Tuesday. If I was tested on a Friday or Saturday morning, maybe I'd get a different result?

I asked the pharmacist if there was anything I could do about the discomfort in my sinuses, and she suggested steam inhalation with Olbas Oil, and that has helped. I don't feel the pressure behind my eye and it unblocked my ear.

Good news with my week 4 virus load tests. 4,785. That sounds pretty good! Unfortunately, I don't know how much of a drop that is, as the hospital lost my baseline tests. Generally my background viral loads have been around 120,000 - 150,000, although they did fall as low 13,000 when I got swine flu. Still, my week 12 viral load was 3,567 the first time I did the treatment, and I'm nearly there already. I think it's the Vitamin D3 which is making the difference.

The side effects from Boceprevir are still very mild. I felt really nauseous one evening, and took an anti-mimetic and was ok. I get a slight taste in my mouth, but it doesn't interfere with my pleasure in eating at all. I wake up wet with sweat nearly every morning, the flu like symptoms are a little worse, the aches and pains and shakiness.

This week depression has showed it's ugly mug for the first time so far. Just that back ground feeling of unease, of not being good enough, of people being not pleased with me. It's complicated by being, quite simply, more stupid than usual; and so being less sensitive to other people's feelings, less effective at work etc.

A new side effect - my eyes are so dry that they cloud over quite often. I will look into eyedrops, no pun intended.

I still feel pretty much ok though. The next milestone is my week 8 blood test. Then I'll find out how effecting adding Victrelis to the mix has been...

17. 30 March 2013 - Very mild side effects

The side effects from the Victrellis so far are very mild:
- some mild nausea that passes quickly, a bit of indigestion-like discomfort;
- a slight taste in my mouth;
- slightly increased side effects from the interferon - tiredness and fever.

I would say that I feel a bit better in some ways; less agitated, warmer - that my circulation has improved.

I have taken every dose so far with a glass of milk and one of the breakfast biscuits.

I feel very lucky and relieved to be getting away with it so lightly so far.

Off to the shop now to buy ingredients for making more biscuits...