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.

2. 20 November 2012 - Waiting for a start date

The letter with my treatment start date still hadn't arrived, so today I called the hospital. It's been nearly four weeks since I saw the consultant, who told me 4-6 weeks. The woman who does the Hepatology appointments is on holiday until 4 December, so I got shirty with the woman on the general appointments number when she couldn't help me. Not proud of myself. I left a message on the Hepatology appointments answerphone, but don't expect to hear anything.

Most other things have been going well though.

I've bought a spare bed, splashing out on an extra comfy mattress, so that I don't have to worry about keeping A awake if I can't sleep. And we managed not to have a huge argument when the mattress would only fit in the car over the top of his seat, so he'd have had to crouch all the way home, and after he'd struggled to squash it all in I then decided I didn't want to drive like that and we took it back; which I am very grateful to A for.

A's said he wants to look after me on the treatment. We had a big row last week, partly because I'm thinking differently because of the treatment. I now judge things by whether I'll be able to cope with iton the treatment, rather than whether I can cope now, so when he started smoking again I insisted he go outside in the rain and cold. Before, we both used to smoke in the living room.  Last time I did the treatment was similar, I became more selfish, the treatment came first. It's so good to know he's been thinking about it and is preparing mentally.

I have been enjoying the fasting; not the being hungry, but the amount of energy I have. And how good food tastes on the up days! I have also lost 4 pounds, as an added bonus.

Bikram yoga is completely exhausting, but makes me feel enormously clean and refreshed and generally virtuous... after: the very long walk home, dragging myself up the hill gasping for water, and desperately preparing some dinner before I collapse.

There has been plenty of other splashing out, on a yoga towel and yoga shorts, moisturising lotion, whatever is treatment related I buy. I'm spending my savings for a deposit for a house.

I have a daydream in which I get to my week 4 blood tests and they say... "but you didn't have any virus present when you started the treatment!", because I've cleared it by being so good.

Re- a potential treatment timetable: I've written some thoughts down, but until I see the nurse I don't know how useful they will be. I'm thinking about making a star chart to keep track of my medicine doses. Why not gold stars, if I'm going to use stickers to mark doses taken? I guess a lot of people do? Not the stars bit, but a chart with stickers.

The only area where I've really not made any progress is at work, in getting things ready so I can be less efficient later in the year and still get everything done. That's another reason I want a start date, to have a focus and a deadline and a kick up the arse.

Ooh - and I got my a Citalopram prescription. The doctor told me he wanted to see me 3 weeks into my treatment, as "the hospital will look after your liver, and we will look after your mental health", which is heartening.

Anyway - I hope all is well with you, thank you for listening, and goodnight.

1. 6 November 2012 - preparing for treatment

I saw my consultant at the hospital last week, and we agreed that I would go ahead with the new triple therapy for Hepatitis C. The consultant recommended Boceprevir over Teleprevir in my case, as I had eczema when I was younger, and she thought I might be high risk of the rash.

I had been very tense and anxious, for a few days before the appointment, I guess because I was nervous about the decision to be made. After the appointment I felt much lighter, knowing I was going to go for it, which makes me think I'm doing at least what I think is best.

I had been very uncertain about whether to go ahead with treatment now or wait for new treatments which don't require Interferon. My liver is in pretty good shape at the moment, level 1 scarring. But... even though it isn't very likely I do hope to be able to try for a baby in a few years time, and would like to try to clear the virus first.

My treatment will start in four to six weeks, depending on when they have space in the clinic. Or maybe a little later, knowing the hospital.

On the Friday after the decision I spent pretty much the whole day on the internet, trying to find out everything I could about triple therapy with Victrelis. I couldn't find many treatment diaries giving first hand experience, just http://48weekshcv.wordpress.com/, which describes the experience of Lynn, who was given Boceprevir during its clinical trial phase.

It was a relief to find http://hcvsupport.org/forum/index.php/board,3.0.html, the HCV support group. I'm very pleased to find somewhere I can ask how big a 'snack' is, when the time comes.

Lynn's blog, and what I found elsewhere on my marathon trawl has convinced me that I need to be determined to stay fit throughout my treatment. My memories of the combined treatment are that I was too tired to do anything, to walk up the hill to the shops, but it seems to me that the fitter you are the better you can bear the treatment, which maybe is why people find that it gets harder and harder as the weeks pass - you feel awful so you rest, then your fitness level drops which compounds your feeling awful.

Thing is I know enough of myself to know that discipline is not my strong point. If I feel rotten I don't go to the gym, on a normal day. So, how to get myself to a place where I go to the gym when I don't want to? Hmm. This is one of the reasons I'm writing this blog, to think out loud, write down why it's important, to try to motivate myself.

Things to do before my treatment starts in 4 weeks time:
- Clarify with the consultant whether I should go to my GP and get a Citalopram prescription, to get started on before my next hospital consultant. Done - I called the hospital today and was lucky enough to speak to my consultant, who said yes go ahead.

- Get a bed for the study, so that I have somewhere to go and toss and turn when I can't sleep, without worrying about waking A up.

- Increase my fitness as much as I can. I'm going to do Bikram yoga until I start the treatment, so that hopefully I can go back to my Viniyoga class once I'm on the treatment and it will feel manageable

- Continue fasting on Wednesdays, and maybe extend it to Thursdays as well, to try to get my immune system running at full steam.

-Think about my diet, and look at iron rich foods I can introduce, to do whatever I can to give my red blood cells a boost.

-Work out a routine for my medication, work and exercise; and work through the pros and cons, maybe using SMART tools and Changing For Good, to drive home through my deepset laziness, that this will make me feel better throughout the treatment in the long run, however lousy it feels at the time.

-Get a Citalopram prescription.

-Have spoken to work.

Is there anything else I need to be doing? It would be good to improve procedures at work now to make it easier to get everything done when I'm ill. I can't think of anything else.

Anyway, if you have stumbled upon this, thank you for listening, and goodnight.