Monday 27 May 2013

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.

Friday 24 May 2013

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.

Wednesday 22 May 2013

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!

Tuesday 21 May 2013

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.

Monday 20 May 2013

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...

Sunday 19 May 2013

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.

Saturday 18 May 2013

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.

Friday 17 May 2013

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...

Tuesday 14 May 2013

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.


Saturday 11 May 2013

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.

Friday 10 May 2013

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...

Thursday 9 May 2013

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.


Tuesday 7 May 2013

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.

Friday 3 May 2013

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.)

Thursday 2 May 2013

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.