Well I did it. 48 weeks of triple therapy done.
I made it through without needing to take any sick leave. I work a three day week, I couldn't have worked full time, but three days was manageable.
My last viral load on treatment, taken at week 44, was undetectable. Still undetectable! Makes me want to do a little dance. Phew. It's all gone well.
By the end of treatment I was anaemic, neutropenic and something else who's name I can't remember. No reason to think they shouldn't all recover now that treatment has stopped. My thyroid has made it through intact, for which I am very grateful.
I'm tired and low on energy. My motivation had got very low, I was living on ready meals and washing up twice a week by the end of treatment. I don't think I'd have managed without the anti-depressants keeping me stable.
Just the wait now - 12 weeks to find out if I'm clear. That's the end of April. Wish me luck!
Showing posts with label treatment diary. Show all posts
Showing posts with label treatment diary. Show all posts
Friday, 31 January 2014
Sunday, 28 July 2013
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.
- 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.
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.
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...
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.
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.)
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.
I feel I've achieved something that might help other people, which feels great. And it's always nice to be listened to.
Saturday, 30 March 2013
17. 30 March 2013 - Very mild side effects
The side effects from the Victrellis so far are very mild:
- some mild nausea that passes quickly, a bit of indigestion-like discomfort;
- a slight taste in my mouth;
- slightly increased side effects from the interferon - tiredness and fever.
I would say that I feel a bit better in some ways; less agitated, warmer - that my circulation has improved.
I have taken every dose so far with a glass of milk and one of the breakfast biscuits.
I feel very lucky and relieved to be getting away with it so lightly so far.
Off to the shop now to buy ingredients for making more biscuits...
- some mild nausea that passes quickly, a bit of indigestion-like discomfort;
- a slight taste in my mouth;
- slightly increased side effects from the interferon - tiredness and fever.
I would say that I feel a bit better in some ways; less agitated, warmer - that my circulation has improved.
I have taken every dose so far with a glass of milk and one of the breakfast biscuits.
I feel very lucky and relieved to be getting away with it so lightly so far.
Off to the shop now to buy ingredients for making more biscuits...
Sunday, 24 March 2013
14. 24 March 2013 - Tough week, followed by holidays!
Last week was the toughest yet, but bearable; mainly because now I'm on holiday until after Easter! It was a hard week because I had to get all the papers ready to send out for the Assets and Finance Committee and I wasn't sleeping properly.
The ribavirin is making me agitated, which is stopping me from sleeping, even though I've been exhausted. Being both agitated and exhausted is pretty uncomfortable. Through the working day I've been confused and forgetful. I've been making little notes of what I'm doing, setting up a breadcrumb trail to keep me going the right way. Cups of tea have gone cold un-drunk, I've been dropping things, banged my head, and generally been stupid and clumsy.
Every time my boss has asked me how I'm doing I've said "I'm tired but ok". He's going to get fed up of hearing that a long time before I stop saying it.
I emailed my Hep C nurse in the week to ask for my starting viral loads and the results of last week's blood test. I also asked if it would be ok to do my week 4 viral load tests next Friday, (which is 4 weeks exactly after I started treatment), rather than tomorrow, Monday, so that it's an accurate indicator of my reaction to the interferon. He hasn't come back to me. I'm really disappointed, but not surprised. I'm seeing him on Tuesday, and I think he's got too much to do to give me that level of support. I can't be too cross; I'm so grateful to get this medical treatment free on the NHS. They have to do a lot with the resources available. But, motivation is going to be one of the big issues on this treatment I think, and it would be motivating for me to be able to keep up to date with my test results, to monitor my progress and see how I'm doing.
By the end of last week I felt pretty low and that 48 weeks was impossibly long. Since then, being on holiday, I've been able to sleep whenever I've felt like it, and am now cheerful. I'm still going to the gym on Fridays, swimming on Sundays and yoga-ing on Mondays, which is keeping my energy levels up. My heart was doing a weird tremulous thing after swimming last Sunday though, so I did ten fewer lengths today. I've stopped drinking tea or coffee after 11.00am, which has helped a bit with in reducing the agitation.
Other side effects so far, my gums are sore, though I'm cleaning them diligently and flossing and using mouthwash. The rash on my hands has gone, the Aveeno has taken care of that, but the rash on my knees is getting worse.
I have decided on my Boceprevir routine. I'll be taking my pills at 9.30 pm; 5.30am and 1.30 pm. I've been experimenting making healthy biscuits to have with milk with my evening and night time doses. These apple and cinnamon breakfast biscuits are pretty good, especially with extra cinnamon and seeds.
This week coming up I've got the blood tests on Monday, so the results are back for my appointment at the hospital on Tuesday afternoon. On Wednesday I'm going to see a friend for lunch. Thursday, I might get my hair cut, and if the blood test clinic is shut on Friday (because of the easter bank holiday) I need to get my viral load test on Thursday too. Then on Friday I've got a personal training session at 10.
I start taking Boceprevir on Friday, which I'm very excited by. Well, it's the big thing in my life at the moment. I'm worried that it's going to make me sick though, as in vomit-y sick, especially as it will be a bank holiday weekend, so I'm not going to be able to get any help until Tuesday most likely. One of the women on the forum said she wasn't abel to keep any food down for 10 days after she started. Gurgh!
I am going to try and persuade the nurse to give me a prescription for Zofran, so I'm prepared. Are they allowed to issue pre-emptive prescriptions? I'll find out.
Other things I'd like to do this week: - plan my future over the next few years. I'm worried about having enough money to have a baby, and feel like I've been avoiding the problem as being 'too hard'. Cos it is!
Take care, have a good week.
The ribavirin is making me agitated, which is stopping me from sleeping, even though I've been exhausted. Being both agitated and exhausted is pretty uncomfortable. Through the working day I've been confused and forgetful. I've been making little notes of what I'm doing, setting up a breadcrumb trail to keep me going the right way. Cups of tea have gone cold un-drunk, I've been dropping things, banged my head, and generally been stupid and clumsy.
Every time my boss has asked me how I'm doing I've said "I'm tired but ok". He's going to get fed up of hearing that a long time before I stop saying it.
I emailed my Hep C nurse in the week to ask for my starting viral loads and the results of last week's blood test. I also asked if it would be ok to do my week 4 viral load tests next Friday, (which is 4 weeks exactly after I started treatment), rather than tomorrow, Monday, so that it's an accurate indicator of my reaction to the interferon. He hasn't come back to me. I'm really disappointed, but not surprised. I'm seeing him on Tuesday, and I think he's got too much to do to give me that level of support. I can't be too cross; I'm so grateful to get this medical treatment free on the NHS. They have to do a lot with the resources available. But, motivation is going to be one of the big issues on this treatment I think, and it would be motivating for me to be able to keep up to date with my test results, to monitor my progress and see how I'm doing.
By the end of last week I felt pretty low and that 48 weeks was impossibly long. Since then, being on holiday, I've been able to sleep whenever I've felt like it, and am now cheerful. I'm still going to the gym on Fridays, swimming on Sundays and yoga-ing on Mondays, which is keeping my energy levels up. My heart was doing a weird tremulous thing after swimming last Sunday though, so I did ten fewer lengths today. I've stopped drinking tea or coffee after 11.00am, which has helped a bit with in reducing the agitation.
Other side effects so far, my gums are sore, though I'm cleaning them diligently and flossing and using mouthwash. The rash on my hands has gone, the Aveeno has taken care of that, but the rash on my knees is getting worse.
I have decided on my Boceprevir routine. I'll be taking my pills at 9.30 pm; 5.30am and 1.30 pm. I've been experimenting making healthy biscuits to have with milk with my evening and night time doses. These apple and cinnamon breakfast biscuits are pretty good, especially with extra cinnamon and seeds.
This week coming up I've got the blood tests on Monday, so the results are back for my appointment at the hospital on Tuesday afternoon. On Wednesday I'm going to see a friend for lunch. Thursday, I might get my hair cut, and if the blood test clinic is shut on Friday (because of the easter bank holiday) I need to get my viral load test on Thursday too. Then on Friday I've got a personal training session at 10.
I start taking Boceprevir on Friday, which I'm very excited by. Well, it's the big thing in my life at the moment. I'm worried that it's going to make me sick though, as in vomit-y sick, especially as it will be a bank holiday weekend, so I'm not going to be able to get any help until Tuesday most likely. One of the women on the forum said she wasn't abel to keep any food down for 10 days after she started. Gurgh!
I am going to try and persuade the nurse to give me a prescription for Zofran, so I'm prepared. Are they allowed to issue pre-emptive prescriptions? I'll find out.
Other things I'd like to do this week: - plan my future over the next few years. I'm worried about having enough money to have a baby, and feel like I've been avoiding the problem as being 'too hard'. Cos it is!
Take care, have a good week.
Friday, 8 March 2013
10. 8 March 2013 - Week 1 side effects
So that's the first week of treatment over. One week done, fortyseven to go. I'm still in the lead in phase, so just on interferon and ribavirin so far.
Side effects so far:
- generally itchy and sensitive skin, tickly face, (mild);
- rash on my hands and swollen knuckles, (mild);
- low mood and confidence, (mild to moderate on some days);
- feeling feverish and sweating more than usual, especially at night and in the gym, (again mild);
- tiredness, especially on working days when I'm out and about. By early afternoon I'm ready to go home, but have managed to fulfil my hours this mini-week, just two days nine to five., (mild so far);
- all my usual aches and pains are a bit worse, e.g. my aches in my hip and feet (poor old lady), (mild);
- difficulty concentrating! e.g. on Thursday I dated a contract 2011. Oops., (mild to moderate);
- busy brain and difficulty sleeping, (mild);
- constantly wanting to eat (I think that's the anti-depressants rather than the Hep C medication).
So, not too bad really.
The adult theatre group with the Old Vic was too much for me, sadly, and I've pulled out of the performance which is on the 28th of March. I can't imagine going on stage at the moment. I'd be frightened, and it wouldn't be fun, so I don't see the point in putting the extra pressure on myself and risk letting the group down. I am really sad to have given it up though. It was so much fun, we laugh a lot, and I will miss all my buddies in the group. Still, I am thankful that I feel as well as I do.
Aveeno handcream is excellent. It's a medicated handcream, designed for eczema etc. It relieves the itching on my hands as soon as I put it on.
Going to the gym this morning has made me feel miles better. I was able to do almost as much as usual, say 80% effort. My mood is hugely improved. The more I did the better I felt.
Now time for a snooze...!
Side effects so far:
- generally itchy and sensitive skin, tickly face, (mild);
- rash on my hands and swollen knuckles, (mild);
- low mood and confidence, (mild to moderate on some days);
- feeling feverish and sweating more than usual, especially at night and in the gym, (again mild);
- tiredness, especially on working days when I'm out and about. By early afternoon I'm ready to go home, but have managed to fulfil my hours this mini-week, just two days nine to five., (mild so far);
- all my usual aches and pains are a bit worse, e.g. my aches in my hip and feet (poor old lady), (mild);
- difficulty concentrating! e.g. on Thursday I dated a contract 2011. Oops., (mild to moderate);
- busy brain and difficulty sleeping, (mild);
- constantly wanting to eat (I think that's the anti-depressants rather than the Hep C medication).
So, not too bad really.
The adult theatre group with the Old Vic was too much for me, sadly, and I've pulled out of the performance which is on the 28th of March. I can't imagine going on stage at the moment. I'd be frightened, and it wouldn't be fun, so I don't see the point in putting the extra pressure on myself and risk letting the group down. I am really sad to have given it up though. It was so much fun, we laugh a lot, and I will miss all my buddies in the group. Still, I am thankful that I feel as well as I do.
Aveeno handcream is excellent. It's a medicated handcream, designed for eczema etc. It relieves the itching on my hands as soon as I put it on.
Going to the gym this morning has made me feel miles better. I was able to do almost as much as usual, say 80% effort. My mood is hugely improved. The more I did the better I felt.
Now time for a snooze...!
Sunday, 3 March 2013
9. 3 March 2013 - Day 3, Feeling good
I slept straight through last night with no problems, so I'll keep taking the second dose of ribavirin in the late afternoon rather than the evening.
Yesterday I managed to do all the usual cleaning, if a bit more slowly than usual.
I had a warm bath, rather than my usual lobster boiler, and was good and moisturised afterwards as promised.
I don't even feel like I need any paracetamol this morning.
Off to meet my brother for a day in town!
Yesterday I managed to do all the usual cleaning, if a bit more slowly than usual.
I had a warm bath, rather than my usual lobster boiler, and was good and moisturised afterwards as promised.
I don't even feel like I need any paracetamol this morning.
Off to meet my brother for a day in town!
Friday, 15 February 2013
5. 15 February 2013 - Vitamin D better than Boceprevir? and, feeling calmer.
I started taking anti-depressants today, to fortify my brain chemicals to face the onslaught of interferon. The Hep C consultant told me to ask for the weakest strength, 10mg, but when I was in the appointment with the doctor I forgot, so I’ve got the 20mg and am taking half. Last time I took these they made me fat and killed my sex drive, I hope that won’t happen if I can manage on 10mg.
There’s an article on the Hep C Trust website which shows adding Vitamin D supplements to the standard therapy (of peg. interferon and ribavirin) as increasing SVR levels from 42% to 86%. Hepatitis C Trust | January | Can adding vitamin D improve response to HCV antiviral therapy?
That’s better than Boceprevir (although it was a smallish trial). (Wikipedia says Boceprevir has SVR rates of 75% - 66% for the fixed term therapy.) The subjects took 2000 IU/d / 50μg vitamin D3 per day, as well as the standard therapy. That seems to be twice the strength of the max strength tablets, or 10 times the recommended daily amount.
I’m going to get some strong vitamin D supplements, and start taking them straight away. I can ask the nurse about them at the appointment in a couple of weeks.
Last week I was feeling really panicky and frightened, but this week I’m much calmer. Being worried and frightened was part of the preparation I think, something I just had to go through. I’m better prepared at work now, I'm a bit ahead, so can move my focus onto myself without guilt.
My brother sent me a lovely supportive email (eventually). Given that he took 10 days to get back to me, I am not sure he’s not one to call on in an emergency but it makes so much difference knowing he's there. A. is being supportive, listening and asking questions, which is also a big comfort, knowing he’s on board.
I am going to see my parents this weekend. I wonder whether it will be the last time this year, if I can't face the drive (they are 2 and half hours away) once I’m on the medication.
The pace is picking up now. 2 weeks to the start line.
Friday, 1 February 2013
4. 1 February 2013 - A month to go until I start the treatment
I have too much time to think about starting, and it is building my fear of the treatment. It's kind of like hanging about at the top of a cliff looking down, but not launching your glider. Vertigo.
I am worried that I don't have enough support.
It was Grandma's birthday last weekend, and mine last week, and we met for our annual joint birthday get together. I was awake at 3 in the morning, unable to sleep, and distressed, scared. I realised it was because I had been looking forward to seeing my brothers, Aunt and Uncle, Mum and Dad, to recharge my courage from their support; but when it came to it I didn't mention starting the treatment. I looked around the dinner table, at everyone talking superficial pleasantnesses and thought, this is what this weekend is for, not for getting attention and support for me.
I get cross when I'm with the aunts and uncles, that we aren't closer, that our relationship isn't realer. They do know I have Hep C, and they are aware I did the treatment before. Mum doesn't want me to talk about it though. I think because it takes her back to the time when I got it, all that unpleasant craziness. And my main loyalty is for Mum, so if she doesn't want it mentioned, I let it go. I don't know if it's the right thing to do though.
Anyway. At 3 in the morning, I was really upset, crying on the bathroom floor with my need to be able to be myself, and be accepted by my family. I realised it was unrealistic, and that they were there to have a nice time, not to look after me. But I decided that I was going to look after me, and came back home to A. That was not a 'done thing to do', but I did it, I left early. I wonder if there will be any fallout.
My Aunt texted to say she wants to come and visit. I don't want to tell her about the treatment now, because it will only make her doubly determined to visit, to look after me. But she's a stressful visitor, nothing is right for her, and things have to be her way. (Mum says I'm just like her, only when she's cross with me.) So I've not responded to my Aunt's text, and that's not polite, but I just don't know what to say.
I've emailed both my brothers this week telling them I'm starting the treatment, and heard nothing back from either of them. I asked G to be back up support, just in case, as he's physically closest. Email silence. I'm feeling sorry for myself now writing this!
My dear friend J has sworn she's there for me any time, but that's just silly. She lives on the other side of the country, has two children under 3 and a teenager to take care of, and a stroppy husband.
A will be looking after me. So long as he doesn't start drinking again. A is addicted to alcohol. He's been sober for nearly a year now. When he drinks he makes Mr Hyde look reasonable and caring. But at he moment he's dear Dr Jekyll, and wants to stay that way.
Last Friday I spent all morning reading the posts on the Boceprevir thread, in the HCV support forum http://hcvsupport.org/forum/index.php?topic=2472.0. That was what got me really scared. Tales of cracked tongues from all mucous membranes turning sahara like, anaemia, depression, exhaustion. I don't want to do it!
And the new treatments look so good. 80% cure rates for null responders, not the 40% achieved by Boceprevir. And no interferon. I am going to put myself through this, 48 weeks of feeling ill, all for a dream to be able to start a family, which is a long way off being a plan. A is not in a position to promise anything. Still, if I don't try, it definitely won't happen, and I do dearly want a family.
Thanks for listening to my rantings, cyberverse. See you again soon.
I am worried that I don't have enough support.
It was Grandma's birthday last weekend, and mine last week, and we met for our annual joint birthday get together. I was awake at 3 in the morning, unable to sleep, and distressed, scared. I realised it was because I had been looking forward to seeing my brothers, Aunt and Uncle, Mum and Dad, to recharge my courage from their support; but when it came to it I didn't mention starting the treatment. I looked around the dinner table, at everyone talking superficial pleasantnesses and thought, this is what this weekend is for, not for getting attention and support for me.
I get cross when I'm with the aunts and uncles, that we aren't closer, that our relationship isn't realer. They do know I have Hep C, and they are aware I did the treatment before. Mum doesn't want me to talk about it though. I think because it takes her back to the time when I got it, all that unpleasant craziness. And my main loyalty is for Mum, so if she doesn't want it mentioned, I let it go. I don't know if it's the right thing to do though.
Anyway. At 3 in the morning, I was really upset, crying on the bathroom floor with my need to be able to be myself, and be accepted by my family. I realised it was unrealistic, and that they were there to have a nice time, not to look after me. But I decided that I was going to look after me, and came back home to A. That was not a 'done thing to do', but I did it, I left early. I wonder if there will be any fallout.
My Aunt texted to say she wants to come and visit. I don't want to tell her about the treatment now, because it will only make her doubly determined to visit, to look after me. But she's a stressful visitor, nothing is right for her, and things have to be her way. (Mum says I'm just like her, only when she's cross with me.) So I've not responded to my Aunt's text, and that's not polite, but I just don't know what to say.
I've emailed both my brothers this week telling them I'm starting the treatment, and heard nothing back from either of them. I asked G to be back up support, just in case, as he's physically closest. Email silence. I'm feeling sorry for myself now writing this!
My dear friend J has sworn she's there for me any time, but that's just silly. She lives on the other side of the country, has two children under 3 and a teenager to take care of, and a stroppy husband.
A will be looking after me. So long as he doesn't start drinking again. A is addicted to alcohol. He's been sober for nearly a year now. When he drinks he makes Mr Hyde look reasonable and caring. But at he moment he's dear Dr Jekyll, and wants to stay that way.
Last Friday I spent all morning reading the posts on the Boceprevir thread, in the HCV support forum http://hcvsupport.org/forum/index.php?topic=2472.0. That was what got me really scared. Tales of cracked tongues from all mucous membranes turning sahara like, anaemia, depression, exhaustion. I don't want to do it!
And the new treatments look so good. 80% cure rates for null responders, not the 40% achieved by Boceprevir. And no interferon. I am going to put myself through this, 48 weeks of feeling ill, all for a dream to be able to start a family, which is a long way off being a plan. A is not in a position to promise anything. Still, if I don't try, it definitely won't happen, and I do dearly want a family.
Thanks for listening to my rantings, cyberverse. See you again soon.
Friday, 18 January 2013
3. 18 January 2013 - I have a start date
Treatment starts on Friday 1 March. The letter from the hospital arrived on Wednesday.
I've told my boss, and he's being supportive. He didn't say much, just, "thanks for letting me know".
I feel pretty well prepared. I'm much fitter than I was at the start of this blog. I've been doing the 5:2 fasting diet, and exercising alot. Each week I've been to Bikram Yoga twice, swimming once, gym once, and Tai Chi once as well. Yesterday, for the first time in my adult life I was within my 'ideal' BMI of 21. I'm sleeping well. I feel physically good, strong, fit and healthy.
I dreamt last night of having a 'deadly' mouse in my shoe, that I had to shake out. (I'm hoping my subconscious was referring to Hep C, and not some other deadly issue that my conscious is unaware of.) That's how I feel, time to shake it off.
I've been lucky in the way my body has dealt with Hep C. It has been mouselike, small and in the background. After the initial attempt at treatment, and once I'd learned that drinking any alcohol at all was a bad idea (as I always felt lousy, tired and miserable for days afterwards), I've felt fine mainly. I think I've had more colds and flu than I got before. I need 8 hours sleep a night. And my memory is rubbish, compared to when I was in my early twenties (but that could just be age?). I've had Hep C for 14 years now, and (according to my last ping test) have next to no liver scarring. Lucky.
Even though there's probably only a 50% chance the treatment will work, (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3153125/) I want to get on with tackling it. I was a non responder last time. But I only just missed the two log drop, and from a low starting viral count of 124,000, so maybe I don't respond poorly to interferon - just not brilliantly? I'm assuming it will work. If it doesn't - nothing I can do about it, so no point worrying.
The treatment will be horrible, tiring, will take over my life; will stop me from being able to prioritise anything except work and treatment. I am scared. I don't want to go through 44 weeks of having no energy, being tearful and anxious, and not being able to sleep. I don't want the side effects of nausea, headaches, chills, anemia and the rest. I'm well at the moment, and treatments are improving, so why go through the current treatment when if I wait ten years I might be able to clear it with minimal side effects? I'm doing it because I hope to start a family, pretty soon after completing the treatment, and it would be wonderful not to have to worry about passing Hep C on to my baby, or anyone else; and to know that I will be well and able to take care of my family for that stage of my life (well, barring other curve balls). And I might not have another phase in my life like this, where I have time and resources to focus fully on myself, my health.
So not a good time to decide to buy a house that needs lots of work doing? That's what I keep telling myself too. Pff. I am being driven by my nesting instinct in that direction too. Not surprising, but one thing at a time would be better.
Final preparations:
- remember to start taking the Citalopram on Friday 15 Feb,
- buy a Yoga Nidra CD so I can rest when I can't sleep.
- get work up to date, and my spreadsheets built for year end, so that the financial accounts and audit run easily (May - July).
- get on with my writing (fiction). Build some momentum to help me keep moving forward when I'm on the treatment.
Hope all is well in your world. Thank you for listening, and, goodnight.
Tuesday, 20 November 2012
2. 20 November 2012 - Waiting for a start date
The letter with my treatment start date still hadn't arrived, so today I called the hospital. It's been nearly four weeks since I saw the consultant, who told me 4-6 weeks. The woman who does the Hepatology appointments is on holiday until 4 December, so I got shirty with the woman on the general appointments number when she couldn't help me. Not proud of myself. I left a message on the Hepatology appointments answerphone, but don't expect to hear anything.
Most other things have been going well though.
I've bought a spare bed, splashing out on an extra comfy mattress, so that I don't have to worry about keeping A awake if I can't sleep. And we managed not to have a huge argument when the mattress would only fit in the car over the top of his seat, so he'd have had to crouch all the way home, and after he'd struggled to squash it all in I then decided I didn't want to drive like that and we took it back; which I am very grateful to A for.
A's said he wants to look after me on the treatment. We had a big row last week, partly because I'm thinking differently because of the treatment. I now judge things by whether I'll be able to cope with iton the treatment, rather than whether I can cope now, so when he started smoking again I insisted he go outside in the rain and cold. Before, we both used to smoke in the living room. Last time I did the treatment was similar, I became more selfish, the treatment came first. It's so good to know he's been thinking about it and is preparing mentally.
I have been enjoying the fasting; not the being hungry, but the amount of energy I have. And how good food tastes on the up days! I have also lost 4 pounds, as an added bonus.
Bikram yoga is completely exhausting, but makes me feel enormously clean and refreshed and generally virtuous... after: the very long walk home, dragging myself up the hill gasping for water, and desperately preparing some dinner before I collapse.
There has been plenty of other splashing out, on a yoga towel and yoga shorts, moisturising lotion, whatever is treatment related I buy. I'm spending my savings for a deposit for a house.
I have a daydream in which I get to my week 4 blood tests and they say... "but you didn't have any virus present when you started the treatment!", because I've cleared it by being so good.
Re- a potential treatment timetable: I've written some thoughts down, but until I see the nurse I don't know how useful they will be. I'm thinking about making a star chart to keep track of my medicine doses. Why not gold stars, if I'm going to use stickers to mark doses taken? I guess a lot of people do? Not the stars bit, but a chart with stickers.
The only area where I've really not made any progress is at work, in getting things ready so I can be less efficient later in the year and still get everything done. That's another reason I want a start date, to have a focus and a deadline and a kick up the arse.
Ooh - and I got my a Citalopram prescription. The doctor told me he wanted to see me 3 weeks into my treatment, as "the hospital will look after your liver, and we will look after your mental health", which is heartening.
Anyway - I hope all is well with you, thank you for listening, and goodnight.
Most other things have been going well though.
I've bought a spare bed, splashing out on an extra comfy mattress, so that I don't have to worry about keeping A awake if I can't sleep. And we managed not to have a huge argument when the mattress would only fit in the car over the top of his seat, so he'd have had to crouch all the way home, and after he'd struggled to squash it all in I then decided I didn't want to drive like that and we took it back; which I am very grateful to A for.
A's said he wants to look after me on the treatment. We had a big row last week, partly because I'm thinking differently because of the treatment. I now judge things by whether I'll be able to cope with iton the treatment, rather than whether I can cope now, so when he started smoking again I insisted he go outside in the rain and cold. Before, we both used to smoke in the living room. Last time I did the treatment was similar, I became more selfish, the treatment came first. It's so good to know he's been thinking about it and is preparing mentally.
I have been enjoying the fasting; not the being hungry, but the amount of energy I have. And how good food tastes on the up days! I have also lost 4 pounds, as an added bonus.
Bikram yoga is completely exhausting, but makes me feel enormously clean and refreshed and generally virtuous... after: the very long walk home, dragging myself up the hill gasping for water, and desperately preparing some dinner before I collapse.
There has been plenty of other splashing out, on a yoga towel and yoga shorts, moisturising lotion, whatever is treatment related I buy. I'm spending my savings for a deposit for a house.
I have a daydream in which I get to my week 4 blood tests and they say... "but you didn't have any virus present when you started the treatment!", because I've cleared it by being so good.
Re- a potential treatment timetable: I've written some thoughts down, but until I see the nurse I don't know how useful they will be. I'm thinking about making a star chart to keep track of my medicine doses. Why not gold stars, if I'm going to use stickers to mark doses taken? I guess a lot of people do? Not the stars bit, but a chart with stickers.
The only area where I've really not made any progress is at work, in getting things ready so I can be less efficient later in the year and still get everything done. That's another reason I want a start date, to have a focus and a deadline and a kick up the arse.
Ooh - and I got my a Citalopram prescription. The doctor told me he wanted to see me 3 weeks into my treatment, as "the hospital will look after your liver, and we will look after your mental health", which is heartening.
Anyway - I hope all is well with you, thank you for listening, and goodnight.
Subscribe to:
Posts (Atom)