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!

37. 9 June 2013 - Feeling quite "normal"

I think I feel a bit better, I really do. I've stopped getting feverish after my interferon shots. I'm still tired a lot and fuzzy headed, but I don't feel sick. It was my 15th shot on Friday.

Maybe I've got better at taking it easy. It's what I do at weekends. Maybe I need a new focus. Maybe treatment can move to the background a bit?

36. 5 June 2013 - Virus not detected!

The treatment is working! I am over the moon. I got my week 12 viral load results today - virus not detected. So, I'm in it for the long run, the full 48 weeks.

My neutrophils are down to 0.31, so the nurse told me to restart the Lenograstim.

The weather over the past week has been beautiful. Lots of sunshine. I've been really good about covering up and using sunblock, but I now have rash all over my hands, which was the only bit of me that was just protected with sunblock rather than clothes. There's also a bit of rash on my belly too, which is a different shape. The rash on my knees has been like expanding circles. The rash on my belly is little dots. Time to start the hydrocortizone cream again I think, and no hot baths or swimming until it's completely cleared.

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.

32. 21 May 2013 - Appointment at the hospital

My blood test results were all good news. My thyroid is still holding up ok, my neutrophils are up to 6.3 (towards the top of normal), and my platelets, though still falling, are falling slowly. I am anaemic, but only very slightly - normal for a woman is 150 - 120, and I scored 118.

As my neutrophils are quite high I'll be taking a couple of weeks break from the Lenograstim. I'm not sure about this, as on the forum, people found that for 3 days after injecting G-CSF their neutrophils were high; i.e. that it worked immediately; but that 3 days later after all the new white blood cells had died (they have a three day lifespan), their neutrophil count would be pretty much back to where it was.  My nurse insists that Lenograstim works by stimulating bone marrow stem cell production and works over a couple of week timeframe. So, I'm not taking any for the next couple of weeks, and then will have another blood test to see how they are holding up.

The nurse prescribed me some sunblock and a 500ml bottle of Aveeno lotion, to save me the full cost.

I've put on about 4kgs/9lbs since I started treatment. It's all the snacking. I've stopped having treats with my Boceprevir, and have half an Oatibix with some milk - about 50 calories. I'm still in my healthy weight band, and the extra fat gives more space for the injections.

We chatted through how i'm doing, and a bit about how I'm feeling. I told the nurse that I'm finding depression the main challenge, but down-played it a bit. I'm already on 40mg of Citalopram, and I don't really want to go up to 60mg, and I think that would have been his suggestion.

I feel boring, as I don't do much except what is necessary. I am not engaged in anything apart from treatment. I can hardly string a sentence together, except, would you like a cup of tea. I fear that my boyfriend is going to get bored with me and fall out of love with me, that he will forget that this isn't what I'm really like, before I recover. But, although that is difficult, and sad, and how I feel, I know it's probably paranoia - so what's the point in asking for help with it. "I keep having these stupid thoughts...." How can the nurse help me with that? The greatest battle is in the mind. I feel like I should be learning something profound about life from this, but my brain is too dull.

Week 12 blood tests on Friday. Eek!

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.

27. 17 May 2013 - Feeling better again

Fortunately, the diarrhoea cleared up in a couple of days. The nurse told me that I could take Loperamide (Imodium), if I needed too. I've bought some just in case, but am currently fine again.

I've also got some Diphenhydramine. I thought an antihistamine might help with my constantly runny nose, and Diphenhydramine makes you dozy - it's sold as Nytol, so I chose that one to help me sleep too. I took some last night and I'd say that my skin felt more comfortable, less itchy, and my sinuses clearer. I also slept well, though I'm having difficulty waking up this morning.

A busy day today. I'm anxious about this weekend, particularly the drive back to Mum and Dad's. Sometimes I feel like it's a stupid risk to take, that I'm not up to the drive and might have an accident; and sometimes I think that I'll be absolutely fine, and that it's essential that I don't give in to the "I can't cope, I can't do it, it's too much" feeling, as then depression will have me. Whereas, coping, will show me I can do it and give me confidence.

It's the end of week 11 today! Only another 37 weeks to go, if all goes well. 23% of the way there...

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.

25. 11 May 2013 - Clinical Care Options website

The Clinical Care Options website  is an excellent source of hepatitis C treatment information, and you can sign up for free.

They publish slides from their conferences on the clinical trial results for the new medicines, and training modules. For example, today they emailed me a link to a training module for hepatitis nurses on preparing patients for triple therapy and preventing adverse events.

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.

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.)

20. 2 May 2013 - Mini Triumph! Hospital have changed their protocol to test vitamin D levels

In my last post, I mentioned that I had emailed three articles to the nurse at the hospital, regarding the impact of vitamin levels on treatment success. The nurse showed them to the clinic head, and they are now going to test everyone's vitamin levels before they start treatment.

I feel I've achieved something that might help other people, which feels great. And it's always nice to be listened to.

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...

16. 29 March 2013 - First Victrellis pills tonight...

I'll let you know how it went tomorrow.

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?)

6. 16 Feb 2013 - SSRI's sleepless night

First night's sleep lost to the treatment. Taking that SSRI yesterday has got my brain overstimulated, I've been awake since three. Was too hot, and my brain feels buzzy. I'm sure I will get used to them soon.

The view on the Hep C forum is that taking vitamin D3 supplements is not contraindicated with Boceprevir, so I'll start on them as soon as they arrive.

5. 15 February 2013 - Vitamin D better than Boceprevir? and, feeling calmer.

I started taking anti-depressants today, to fortify my brain chemicals to face the onslaught of interferon. The Hep C consultant told me to ask for the weakest strength, 10mg, but when I was in the appointment with the doctor I forgot, so I’ve got the 20mg and am taking half. Last time I took these they made me fat and killed my sex drive, I hope that won’t happen if I can manage on 10mg.

There’s an article on the Hep C Trust website which shows adding Vitamin D supplements to the standard therapy (of peg. interferon and ribavirin) as increasing SVR levels from 42% to 86%. Hepatitis C Trust | January | Can adding vitamin D improve response to HCV antiviral therapy?

That’s better than Boceprevir (although it was a smallish trial). (Wikipedia says Boceprevir has SVR rates of 75% - 66% for the fixed term therapy.) The subjects took 2000 IU/d / 50μg vitamin D3 per day, as well as the standard therapy. That seems to be twice the strength of the max strength tablets, or 10 times the recommended daily amount. 

I’m going to get some strong vitamin D supplements, and start taking them straight away. I can ask the nurse about them at the appointment in a couple of weeks.

Last week I was feeling really panicky and frightened, but this week I’m much calmer. Being worried and frightened was part of the preparation I think, something I just had to go through. I’m better prepared at work now, I'm a bit ahead, so can move my focus onto myself without guilt. 

My brother sent me a lovely supportive email (eventually). Given that he took 10 days to get back to me, I am not sure he’s not one to call on in an emergency but it makes so much difference knowing he's there. A. is being supportive, listening and asking questions, which is also a big comfort, knowing he’s on board.

I am going to see my parents this weekend. I wonder whether it will be the last time this year, if I can't  face the drive (they are 2 and half hours away) once I’m on the medication. 

The pace is picking up now. 2 weeks to the start line.

4. 1 February 2013 - A month to go until I start the treatment

I have too much time to think about starting, and it is building my fear of the treatment. It's kind of like hanging about at the top of a cliff looking down, but not launching your glider. Vertigo.

I am worried that I don't have enough support.

It was Grandma's birthday last weekend, and mine last week, and we met for our annual joint birthday get together. I was awake at 3 in the morning, unable to sleep, and distressed, scared. I realised it was because I had been looking forward to seeing my brothers, Aunt and Uncle, Mum and Dad, to recharge my courage from their support; but when it came to it I didn't mention starting the treatment. I looked around the dinner table, at everyone talking superficial pleasantnesses and thought, this is what this weekend is for, not for getting attention and support for me.

I get cross when I'm with the aunts and uncles, that we aren't closer, that our relationship isn't realer. They do know I have Hep C, and they are aware I did the treatment before. Mum doesn't want me to talk about it though. I think because it takes her back to the time when I got it, all that unpleasant craziness. And my main loyalty is for Mum, so if she doesn't want it mentioned, I let it go. I don't know if it's the right thing to do though.

Anyway. At 3 in the morning, I was really upset, crying on the bathroom floor with my need to be able to be myself, and be accepted by my family.  I realised it was unrealistic, and that they were there to have a nice time, not to look after me. But I decided that I was going to look after me, and came back home to A. That was not a 'done thing to do', but I did it, I left early. I wonder if there will be any fallout.

My Aunt texted to say she wants to come and visit. I don't want to tell her about the treatment now, because it will only make her doubly determined to visit, to look after me. But she's a stressful visitor, nothing is right for her, and things have to be her way. (Mum says I'm just like her, only when she's cross with me.) So I've not responded to my Aunt's text, and that's not polite, but I just don't know what to say.

I've emailed both my brothers this week telling them I'm starting the treatment, and heard nothing back from either of them. I asked G to be back up support, just in case, as he's physically closest. Email silence. I'm feeling sorry for myself now writing this!

My dear friend J has sworn she's there for me any time, but that's just silly. She lives on the other side of the country, has two children under 3 and a teenager to take care of, and a stroppy husband.

A will be looking after me. So long as he doesn't start drinking again. A is addicted to alcohol. He's been sober for nearly a year now. When he drinks he makes Mr Hyde look reasonable and caring. But at he moment he's dear Dr Jekyll, and wants to stay that way.

Last Friday I spent all morning reading the posts on the Boceprevir thread, in the HCV support forum http://hcvsupport.org/forum/index.php?topic=2472.0. That was what got me really scared. Tales of cracked tongues from all mucous membranes turning sahara like, anaemia, depression, exhaustion. I don't want to do it!

And the new treatments look so good. 80% cure rates for null responders, not the 40% achieved by Boceprevir. And no interferon. I am going to put myself through this, 48 weeks of feeling ill, all for a dream to be able to start a family, which is a long way off being a plan. A is not in a position to promise anything. Still, if I don't try, it definitely won't happen, and I do dearly want a family.

Thanks for listening to my rantings, cyberverse. See you again soon.

3. 18 January 2013 - I have a start date

Treatment starts on Friday 1 March. The letter from the hospital arrived on Wednesday.

I've told my boss, and he's being supportive. He didn't say much, just, "thanks for letting me know".

I feel pretty well prepared. I'm much fitter than I was at the start of this blog. I've been doing the 5:2 fasting diet, and exercising alot. Each week I've been to Bikram Yoga twice, swimming once, gym once,  and Tai Chi once as well. Yesterday, for the first time in my adult life I was within my 'ideal' BMI of 21. I'm sleeping well. I feel physically good, strong, fit and healthy. 

I dreamt last night of having a 'deadly' mouse in my shoe, that I had to shake out. (I'm hoping my subconscious was referring to Hep C, and not some other deadly issue that my conscious is unaware of.) That's how I feel, time to shake it off.

I've been lucky in the way my body has dealt with Hep C. It has been mouselike, small and in the background. After the initial attempt at treatment, and once I'd learned that drinking any alcohol at all was a bad idea (as I always felt lousy, tired and miserable for days afterwards), I've felt fine mainly. I think I've had more colds and flu than I got before. I need 8 hours sleep a night. And my memory is rubbish, compared to when I was in my early twenties (but that could just be age?). I've had Hep C for 14 years now, and (according to my last ping test) have next to no liver scarring. Lucky.

Even though there's probably only a 50% chance the treatment will work, (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3153125/) I want to get on with tackling it. I was a non responder last time. But I only just missed the two log drop, and from a low starting viral count of 124,000, so maybe I don't respond poorly to interferon - just not brilliantly? I'm assuming it will work. If it doesn't - nothing I can do about it, so no point worrying.

The treatment will be horrible, tiring, will take over my life; will stop me from being able to prioritise anything except work and treatment. I am scared. I don't want to go through 44 weeks of having no energy, being tearful and anxious, and not being able to sleep. I don't want the side effects of nausea, headaches, chills, anemia and the rest. I'm well at the moment, and treatments are improving, so why go through the current treatment when if I wait ten years I might be able to clear it with minimal side effects? I'm doing it because I hope to start a family, pretty soon after completing the treatment, and it would be wonderful not to have to worry about passing Hep C on to my baby, or anyone else; and to know that I will be well and able to take care of my family for that stage of my life (well, barring other curve balls). And I might not have another phase in my life like this, where I have time and resources to focus fully on myself, my health.

So not a good time to decide to buy a house that needs lots of work doing? That's what I keep telling myself too. Pff. I am being driven by my nesting instinct in that direction too. Not surprising, but one thing at a time would be better.

Final preparations: 

- remember to start taking the Citalopram on Friday 15 Feb,

- buy a Yoga Nidra CD so I can rest when I can't sleep.

- get work up to date, and my spreadsheets built for year end, so that the financial accounts and audit run easily (May - July).

- get on with my writing (fiction). Build some momentum to help me keep moving forward when I'm on the treatment.

Hope all is well in your world. Thank you for listening, and, goodnight.