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!