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.
Friday, 24 May 2013
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!
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.
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...
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.
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.
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...
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...
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