One advantage of being a bit older doing the treatment this time is that it is flying by, along with the rest of time. A bit soon to be saying that kind of thing. But later this evening I will inject the interferon for the third time.
It's been a good week. I'd say that although I am more tired that the week before, apart from that I feel better this week: less feverish, less blue, I can concentrate better and the rash on my hands is improving.
On Monday I told the team at work about the treatment. I asked the boss to get the team together, as I want them to understand what I'm doing, especially for the days when I don't feel so hot. I told them that I was doing treatment for Hep C, a bit about the drugs, the side effects and what it entails. The Care Manager, who used to be a nurse, had some questions, which I felt was useful by immediately turning it into something that could be discussed. She asked whether it might cover my having another virus. I wonder whether she asked that because her husband is recovering from surgery, and she's concerned about catching a virus from me and taking infecting him? I told her I'd fight off any other viruses better that usual, as that's my understanding.
I thought it was best just to be straightforward about having Hep C. If I act unembarrassed about having it, I think that reduces stigma, whereas if I act ashamed, other people who know less about it than me and who have probably never thought about it before will pick up on my signals and think that the appropriate way to view Hep C is as something to be ashamed of. So, i've also been straightforward in telling the drama group the reason I've stopped going.
Last time I did the treatment I was less open. Some people found out I was doing a medical treatment, but not what for, and they were very worried about me: I assume they thought I had cancer of some kind - I wanted to avoid worrying people unnecessarily too.
Fridays are non-working days in my part-time week, and it's at the end of my treatment week too with the least effects of interferon, so I try to work out quite hard. I did my whole usual work out, cardio and weights. I'm thinking of using my 2 kilometer rowing time as benchmark for how much energy I've got. Today it took me 10 minutes dead, which is about 10 seconds faster than last week and 20 seconds slower than my pre-treatment time. This week the whole work out felt harder though. By doing the same, I'm working harder.
I saw my GP this morning. It was a bit of a non-event as most of the side effects that I've been getting from the citalopram and the treatment have lessened. Still, it was good to check in and let her know what's going on. And they have said they want to monitor my mental state, so I am co-operating.
Then, in the afternoon, it was my second round of blood tests. Again, absolutely no drama, and no wait to go in either. I kept with the newly started tradition of coffee and cake afterwards. Then yoga nidra, put the shopping away, and it's time to make dinner already.
I'm going to try having an isotonic sports drink with my injection this evening, as it's recommended by some people on the forum. It can't hurt.
Thanks for taking the time to read this. Hope all is well with you.
Friday, 15 March 2013
Tuesday, 12 March 2013
12. 12 March 2013 - One bad day...
...does not a winter make. There was a blizzard in Brizzle yesterday, for all of five minutes, then the sun was out. It's cold though. Spring is a bit slow coming.
Yesterday was hard. I'd increased the SSRIs up to the 20mg standard prescribed dose, and had the same reaction as when I first started them, busy brain kept me awake from 2am. As the time ticked by I got more and more tired and grumpy and cross about being awake, which then made me more agitated and awake, the usual.
And then as it got closer to getting-up-time I started weighing up, should I go in to work or do I "feel too unwell". I hate that conundrum. If I think about it for long enough I can nearly always persuade myself that I am ill enough that it would be better that I rest, especially when I am feeling down. I really believe though that thinking that you can do it, are strong enough, are ok, are able, is important for combatting depression and lack of self-belief.
I feel that if I let myself stay at home when I feel ill, I'll be at home quite a lot, and I'll do less and feel worse. I will get behind at work and get anxious and feel like I'm not coping. I will start to think of myself as, primarily, ill. But that if I force myself into work, and think of myself as a 'fighter', not giving in, and take stubborn pride in going in every day of the treatment (if possible), however rotten I'm feeling, that I will most likely continue to function and cope, with a few days here and there of it being too much, rather than months. Or... I'll exhaust myself.
So I dragged myself into work, feeling rubbish. As I was walking down the road (after having gone back to get my mobile phone, more incompetence) I remembered the bonhomie of my HCV support buddies and it lifted me up. I check in everyday now, just for 10 minutes or so, to catch up on how people are doing. We fight this fight together!
At work I got on with my repetitive, familiar, everyday tasks that don't require any original thought. I find that every time I switch screens, e.g. between Excel and Outlook, that I forget what I'm doing, so I found myself talking out loud (I am in an office on my own)... "come on R, what are we doing, we are looking for the payment schedule for X..." But there will be a day when I need to be able to do something which does require original thought. Oh well.
My boss told me to go home 45 mins early, before the snow recommenced and I refused. I hope that isn't going to backfire, by making him feel that his help has been rejected. I want to save going home early for week 44 of the treatment, not use it in week two.
The week before, I'd signed up for a nine week yoga course on Monday evenings. I didn't go last week because I was too busy being miserable, so really wanted to go yesterday. You miss one class, ok, you miss two it gets embarrassing and then you end up not going at all which is a waste of money. So, even though I was feeling sick, faint and shaky I went. I thought I was being stupid in pushing myself so hard - turns out not. The class was restful, just the right amount of challenging, and I felt transformed - energised and calm - afterwards.
I slept ok last night, but today, I have a brain of sludge. Or does it just feel like sludge? Maybe it works ok it just feels... it feels like yesterday I did 500 brain press-ups in the mud whilst being shouted at by a brain Sergeant Major and now it is quivering brain jelly.
Yesterday was hard. I'd increased the SSRIs up to the 20mg standard prescribed dose, and had the same reaction as when I first started them, busy brain kept me awake from 2am. As the time ticked by I got more and more tired and grumpy and cross about being awake, which then made me more agitated and awake, the usual.
And then as it got closer to getting-up-time I started weighing up, should I go in to work or do I "feel too unwell". I hate that conundrum. If I think about it for long enough I can nearly always persuade myself that I am ill enough that it would be better that I rest, especially when I am feeling down. I really believe though that thinking that you can do it, are strong enough, are ok, are able, is important for combatting depression and lack of self-belief.
I feel that if I let myself stay at home when I feel ill, I'll be at home quite a lot, and I'll do less and feel worse. I will get behind at work and get anxious and feel like I'm not coping. I will start to think of myself as, primarily, ill. But that if I force myself into work, and think of myself as a 'fighter', not giving in, and take stubborn pride in going in every day of the treatment (if possible), however rotten I'm feeling, that I will most likely continue to function and cope, with a few days here and there of it being too much, rather than months. Or... I'll exhaust myself.
So I dragged myself into work, feeling rubbish. As I was walking down the road (after having gone back to get my mobile phone, more incompetence) I remembered the bonhomie of my HCV support buddies and it lifted me up. I check in everyday now, just for 10 minutes or so, to catch up on how people are doing. We fight this fight together!
At work I got on with my repetitive, familiar, everyday tasks that don't require any original thought. I find that every time I switch screens, e.g. between Excel and Outlook, that I forget what I'm doing, so I found myself talking out loud (I am in an office on my own)... "come on R, what are we doing, we are looking for the payment schedule for X..." But there will be a day when I need to be able to do something which does require original thought. Oh well.
My boss told me to go home 45 mins early, before the snow recommenced and I refused. I hope that isn't going to backfire, by making him feel that his help has been rejected. I want to save going home early for week 44 of the treatment, not use it in week two.
The week before, I'd signed up for a nine week yoga course on Monday evenings. I didn't go last week because I was too busy being miserable, so really wanted to go yesterday. You miss one class, ok, you miss two it gets embarrassing and then you end up not going at all which is a waste of money. So, even though I was feeling sick, faint and shaky I went. I thought I was being stupid in pushing myself so hard - turns out not. The class was restful, just the right amount of challenging, and I felt transformed - energised and calm - afterwards.
I slept ok last night, but today, I have a brain of sludge. Or does it just feel like sludge? Maybe it works ok it just feels... it feels like yesterday I did 500 brain press-ups in the mud whilst being shouted at by a brain Sergeant Major and now it is quivering brain jelly.
Sunday, 10 March 2013
11. 10 March 2013 - Second injection and starting blood test results.
The second interferon injection knocked me back a bit, more than the first one.
I did the injection on Friday evening, the same as the week before. Saturday morning I went back to bed until lunchtime. I was just leaden with tiredness. Then in the afternoon we had a walk round the block for a bit of fresh air and stopped for coffee with and a chat A. By evening I was feeling a bit better.
The cleaning hasn't been done yet though.
My wisdom teeth are bothering me. They are quite sharp, and are rubbing the inside of my mouth, making an ulcer. They hadn't bothered me until I started the treatment. I wonder whether they are connected?
I've started taking the full 20mg dose of Citalopram, and have got a doctor's appointment next Friday to discuss them. I'm wondering whether a different variety might not make me want to eat so much.
We went swimming this morning, eventually. The AA had to come out restart the car - I'd left the interior light on all week and the battery was flat. That was another reason we didn't go to Tai Chi on Saturday morning. At the time it really upset me, especially because I couldn't lock the boot as the lock is electronic and I was worried that someone would steal the car. Then I realised they couldn't steal it as the battery was flat! I am blaming the brain fog for my leaving the light on. I think I turned it on just as I got out of the car, thinking I was turning it off.
We were only in the pool for 25 mins before it closed for lunch, but still better than nothing. Can rest this afternoon now.
The nurse emailed through my starting blood test results. The virus load test results aren't ready, but all the rest were fine. Even my ALT level was within the normal range, if right at the top limit.
Hope all's well with you.
I did the injection on Friday evening, the same as the week before. Saturday morning I went back to bed until lunchtime. I was just leaden with tiredness. Then in the afternoon we had a walk round the block for a bit of fresh air and stopped for coffee with and a chat A. By evening I was feeling a bit better.
The cleaning hasn't been done yet though.
My wisdom teeth are bothering me. They are quite sharp, and are rubbing the inside of my mouth, making an ulcer. They hadn't bothered me until I started the treatment. I wonder whether they are connected?
I've started taking the full 20mg dose of Citalopram, and have got a doctor's appointment next Friday to discuss them. I'm wondering whether a different variety might not make me want to eat so much.
We went swimming this morning, eventually. The AA had to come out restart the car - I'd left the interior light on all week and the battery was flat. That was another reason we didn't go to Tai Chi on Saturday morning. At the time it really upset me, especially because I couldn't lock the boot as the lock is electronic and I was worried that someone would steal the car. Then I realised they couldn't steal it as the battery was flat! I am blaming the brain fog for my leaving the light on. I think I turned it on just as I got out of the car, thinking I was turning it off.
We were only in the pool for 25 mins before it closed for lunch, but still better than nothing. Can rest this afternoon now.
The nurse emailed through my starting blood test results. The virus load test results aren't ready, but all the rest were fine. Even my ALT level was within the normal range, if right at the top limit.
Hope all's well with you.
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!
Saturday, 2 March 2013
8. 2 March 2013 - Fine so far
I am really pleased with how well I've felt since I took the first doses. I know it's very early yet.
The injection pen for the interferon is great! It didn't hurt at all.
I have been a bit achey. All the usual aches and pains - in my hip, in my feet - are amplified. I took a couple of ibuprofen last night as it was stopping me getting to sleep, but it's not a problem.
I woke in the night twice, and couldn't get back to sleep for a couple of hours the second time. My relaxation CDs didn't send me off as they usually do. My brain was too busy and I was hot. However, thinking about my perfect bathroom layout seemed to do the job, so I'm not that tired today as I could sleep in, it being a Saturday.
I think I will try and take the ribavirin earlier, about 4pm rather than with dinner at 7pm, as I've heard that can help with sleeping through.
Saturday mornings are Tai Chi. I went this morning as usual, and enjoyed it just as usual.
I've got enough energy to do the cleaning, sadly.
The injection pen for the interferon is great! It didn't hurt at all.
I have been a bit achey. All the usual aches and pains - in my hip, in my feet - are amplified. I took a couple of ibuprofen last night as it was stopping me getting to sleep, but it's not a problem.
I woke in the night twice, and couldn't get back to sleep for a couple of hours the second time. My relaxation CDs didn't send me off as they usually do. My brain was too busy and I was hot. However, thinking about my perfect bathroom layout seemed to do the job, so I'm not that tired today as I could sleep in, it being a Saturday.
I think I will try and take the ribavirin earlier, about 4pm rather than with dinner at 7pm, as I've heard that can help with sleeping through.
Saturday mornings are Tai Chi. I went this morning as usual, and enjoyed it just as usual.
I've got enough energy to do the cleaning, sadly.
Friday, 1 March 2013
7. 1 March 2013 - First day of treatment
Today has been a bit of a non-event, after the long build up. It's 6pm and I'm yet to take any medicine.
My appointment with the nurse was at 10.30, but I didn't see him until 11.45, and didn't get out of the appointment until 12.30.
The nurse was very helpful, knowledgeable and professional, but seemed down-beat. Generally I got the impression that all is not well at the hospital, and staff are demotivated, that maybe the leadership isn't very good.
The nurse threw me completely at the end of the appointment by - after we'd gone through all the medication, using the injection pen, managing side effects, the lot - bringing up the prospect of not doing the triple therapy and going on a clinical trial starting in May instead. The consultant had written a note on my file saying that I'd probably qualify and the new drug might give me a better chance of clearing the virus. The nurse also thought the trial might be a shorter treatment. So he called the clinical research team and they weren't about, and then the clinic head, and she wasn't available, so I left the appointment not knowing whether I was going to do the treatment or not. He said to carry on as if I was, and he'd call me in the afternoon with more information on the trial.
So it was off to the pharmacy to collect my prescription of four weeks Ribavirin and Interferon; and then for blood tests.
The blood tests were much quicker than usual. Sometimes my blood is reluctant to go into the vials, but I'd been to the gym in the morning, and took water with me and kept hydrated, and the blood tests were no trouble at all. I didn't feel dizzy or faint afterwards either, so I'll try that again. I did go for coffee and cake after the appointment anyway though, as I had promised myself, and it's important to keep promises (any excuse for cake).
The nurse called whilst I was eating said cake, and told me the clinical trial would start in August, not May, and I might not get on it, and it might be 48 weeks treatment length anyway, so I've decided to go ahead with the current triple therapy. I've decided to assume it's going to work, with the vitamin D3 supplements as well. I'll take my first 2 Ribavirin with dinner and have my first injection this evening. I'll let you know how it goes tomorrow.
I've bought coloured stickers, to stick in my diary to keep track of every drugs dose I take. The pharmacy won't give out the weekday drug trays for Hep C treatment. Apparently the level of cognitive impairment isn't severe enough.
I've been feeling a bit feverish the past few days, like I felt when I first got Hep C. I've been wondering whether it's because of the vitamin D3, that my immune system has kicked up a gear already in fighting the virus.
Promises I have made to myself, to stick to throughout the treatment:
- I will always moisturise my skin after every bath and shower;
- I will drink at least 2.2 litres of water every day;
- I'm going to try and feel as well as I can. I'll take paracetamol, and any other palliative medicines to manage the side effects and make it as easy as possible. (Last time I was guilty of not tackling the side-effects as I felt that feeling worse meant that the treatment was working better.)
- I will body brush once a week (may help remove toxins?)
My appointment with the nurse was at 10.30, but I didn't see him until 11.45, and didn't get out of the appointment until 12.30.
The nurse was very helpful, knowledgeable and professional, but seemed down-beat. Generally I got the impression that all is not well at the hospital, and staff are demotivated, that maybe the leadership isn't very good.
Information the nurse confirmed:
- I'll be doing 48 weeks treatment, as a prior non-responder.
- My chances of clearing the virus are about 30%.
- If the interferon freezes in the fridge I need to get it replaced (our fridge is temperamental).
- I'll be going back for more blood tests in two weeks, then for blood tests and the next clinic in three-and-a-half weeks.
- I can take up to 2000mg of paracetamol a day safely.
- They have access to a psychiatric team, if I get really depressed.
- I am likely to get brain fog, cognitive impairment, because of the interferon, which he thinks will probably effect my work.
- They don't give epoetin/procrit for managing anaemia, except as a short term rescue to allow continuation of the treatment. Generally they reduce ribavirin as a first step, because the epoetin is expensive.
- I have to be very assertive about checking that any other medicine prescribed to me whilst I'm on the treatment is not contraindicated. E.g. some antibiotics could cause serious problems when combined with Boceprevir, and not all GPs are familiar with the new drugs.
The nurse referred me to www.drugs.com to check any interactions. I checked the contraceptive I take for endometritis, and it is contraindicated, as it might be reduced in concentration and effectiveness and might not be a reliable contraceptive. I don't think that will be an issue for the endometritis though? I'll ask my GP. I know to use two other methods of contraception to prevent pregnancy on the treatment.
The nurse threw me completely at the end of the appointment by - after we'd gone through all the medication, using the injection pen, managing side effects, the lot - bringing up the prospect of not doing the triple therapy and going on a clinical trial starting in May instead. The consultant had written a note on my file saying that I'd probably qualify and the new drug might give me a better chance of clearing the virus. The nurse also thought the trial might be a shorter treatment. So he called the clinical research team and they weren't about, and then the clinic head, and she wasn't available, so I left the appointment not knowing whether I was going to do the treatment or not. He said to carry on as if I was, and he'd call me in the afternoon with more information on the trial.
So it was off to the pharmacy to collect my prescription of four weeks Ribavirin and Interferon; and then for blood tests.
The blood tests were much quicker than usual. Sometimes my blood is reluctant to go into the vials, but I'd been to the gym in the morning, and took water with me and kept hydrated, and the blood tests were no trouble at all. I didn't feel dizzy or faint afterwards either, so I'll try that again. I did go for coffee and cake after the appointment anyway though, as I had promised myself, and it's important to keep promises (any excuse for cake).
The nurse called whilst I was eating said cake, and told me the clinical trial would start in August, not May, and I might not get on it, and it might be 48 weeks treatment length anyway, so I've decided to go ahead with the current triple therapy. I've decided to assume it's going to work, with the vitamin D3 supplements as well. I'll take my first 2 Ribavirin with dinner and have my first injection this evening. I'll let you know how it goes tomorrow.
I've bought coloured stickers, to stick in my diary to keep track of every drugs dose I take. The pharmacy won't give out the weekday drug trays for Hep C treatment. Apparently the level of cognitive impairment isn't severe enough.
I've been feeling a bit feverish the past few days, like I felt when I first got Hep C. I've been wondering whether it's because of the vitamin D3, that my immune system has kicked up a gear already in fighting the virus.
Promises I have made to myself, to stick to throughout the treatment:
- I will always moisturise my skin after every bath and shower;
- I will drink at least 2.2 litres of water every day;
- I'm going to try and feel as well as I can. I'll take paracetamol, and any other palliative medicines to manage the side effects and make it as easy as possible. (Last time I was guilty of not tackling the side-effects as I felt that feeling worse meant that the treatment was working better.)
- I will body brush once a week (may help remove toxins?)
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