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!

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.

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...