I think I feel a bit better, I really do. I've stopped getting feverish after my interferon shots. I'm still tired a lot and fuzzy headed, but I don't feel sick. It was my 15th shot on Friday.
Maybe I've got better at taking it easy. It's what I do at weekends. Maybe I need a new focus. Maybe treatment can move to the background a bit?
Sunday, 9 June 2013
Wednesday, 5 June 2013
36. 5 June 2013 - Virus not detected!
The treatment is working! I am over the moon. I got my week 12 viral load results today - virus not detected. So, I'm in it for the long run, the full 48 weeks.
My neutrophils are down to 0.31, so the nurse told me to restart the Lenograstim.
The weather over the past week has been beautiful. Lots of sunshine. I've been really good about covering up and using sunblock, but I now have rash all over my hands, which was the only bit of me that was just protected with sunblock rather than clothes. There's also a bit of rash on my belly too, which is a different shape. The rash on my knees has been like expanding circles. The rash on my belly is little dots. Time to start the hydrocortizone cream again I think, and no hot baths or swimming until it's completely cleared.
My neutrophils are down to 0.31, so the nurse told me to restart the Lenograstim.
The weather over the past week has been beautiful. Lots of sunshine. I've been really good about covering up and using sunblock, but I now have rash all over my hands, which was the only bit of me that was just protected with sunblock rather than clothes. There's also a bit of rash on my belly too, which is a different shape. The rash on my knees has been like expanding circles. The rash on my belly is little dots. Time to start the hydrocortizone cream again I think, and no hot baths or swimming until it's completely cleared.
Saturday, 1 June 2013
35. 1 June 2013 - Impatient!
On Thursday I called the nurse at the hospital to see if my viral load results were back. I knew it was much too soon - they take 2 to 4 weeks and I was calling after 4 working days - but I couldn't resist. They weren't ready, but he did confirm that the lab has the samples.
I'm finding it a struggle to muster the motivation to keep going. I don't tend to put my stickers showing I've taken my drugs doses in my diary straight away, but do them all together at the end of the day. I don't floss every single night like I used to, and my gums are getting sore again. Those are just two little examples. The regime is getting wearing. Getting the results will give me a boost, I think, if they are good.
It's been 17 months since I gave up smoking, but lately I've started to dream about smoking! It's very strange, as I haven't missed it at all, not after the first few weeks. I've got that craving feeling, that there's something I need to feel better. I suspect it's oxygen I'm missing, from the anaemia.
Yesterday was another low day. I got up late, about 10.30am. Then after spending the morning on the computer looking up properties to buy in Spain (my latest hairbrained idea) I went back to bed at about 1pm. I felt so weary, leaden, like I just wanted to be and not think. But, it didn't help. It's Mum's birthday on Tuesday so I should have been out buying her a present. The Ocado man brought the food delivery for the week, and I just put the stuff which would spoil away and left the rest in bags in the hall. I didn't wash up, didn't do a wash. And it was a beautiful day outside.
And then my honey called me and said did I want to meet and sit in the sun for half an hour on his way home from work. So we went and sat on a bench by the fountains and watched the world go by. He'd bought me a cake-sicle, a pretty sticky treat. And we chatted about nothing serious and laughed, and I was better. I feel profoundly grateful that he knows just how to cheer me up, and that I have his love.
I'm finding it a struggle to muster the motivation to keep going. I don't tend to put my stickers showing I've taken my drugs doses in my diary straight away, but do them all together at the end of the day. I don't floss every single night like I used to, and my gums are getting sore again. Those are just two little examples. The regime is getting wearing. Getting the results will give me a boost, I think, if they are good.
It's been 17 months since I gave up smoking, but lately I've started to dream about smoking! It's very strange, as I haven't missed it at all, not after the first few weeks. I've got that craving feeling, that there's something I need to feel better. I suspect it's oxygen I'm missing, from the anaemia.
Yesterday was another low day. I got up late, about 10.30am. Then after spending the morning on the computer looking up properties to buy in Spain (my latest hairbrained idea) I went back to bed at about 1pm. I felt so weary, leaden, like I just wanted to be and not think. But, it didn't help. It's Mum's birthday on Tuesday so I should have been out buying her a present. The Ocado man brought the food delivery for the week, and I just put the stuff which would spoil away and left the rest in bags in the hall. I didn't wash up, didn't do a wash. And it was a beautiful day outside.
And then my honey called me and said did I want to meet and sit in the sun for half an hour on his way home from work. So we went and sat on a bench by the fountains and watched the world go by. He'd bought me a cake-sicle, a pretty sticky treat. And we chatted about nothing serious and laughed, and I was better. I feel profoundly grateful that he knows just how to cheer me up, and that I have his love.
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.
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.
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!
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.
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