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.