On 25th April I went for my final blood tests. Yesterday I called the hospital and got the results - no virus detected. I am cured. Or at least I have achieved a "sustained virologic response", aka SVR. 99% of people who have SVR three months post treatment are cured, though there is a small chance that the virus is hiding out somewhere. I'm not thinking about that though. I'm cured!
Next week I have a follow up appointment with the hospital. Then they'll have me back in a year for more blood tests just in case. My liver is in good shape, so I won't need to be monitored. That's it - my time with hepatitis C over.
Recovering from the treatment has been no picnic. Physically, I feel good. I have energy. I look younger, my eyes are bright and clear and aren't puffy any more (I had thought that was just a feature of my face).
My brain is mullered though (for those not familiar with that slang term, it roughly means beaten and battered.) Coming off the antidepressants is proving very hard. My brain feels weird; like I have tinnitus inside my head, it feels blank and taught. I am finding it very difficult to concentrate. Any work where I need to do anything new takes me hours. It's been over three months I've slowly been reducing my antidepressant dose, and I'm still only down to 15mg a day (from 40 on treatment) and I can really feel it, all the time, every day. I thought if I reduced it slowly it would be imperceptible.
I'm also very impatient. I feel I only have time for my big ambitions: my writing, my drawing. This morning I was disabled by confusion, there's a parcel at the post office that I need to pick up and that means I can't draw and arghh! I am very much looking forward to regaining some perspective. It makes a big difference though, knowing that my pulped brain isn't because the virus is hiding out there preparing for a counter attack. I will recover from the anti-depressants and feel normal again.
Mum nearly cried on the phone when I told her the good news. The women at work, who have looked after me through treatment, reacted the same way. I am happy. My heart feels big and warm. I am grateful. The shadow over my life is gone. It's good that this story is over, and has a happy ending.
Saturday, 3 May 2014
Friday, 31 January 2014
31 January 2014 - Finished!
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!
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!
Friday, 11 October 2013
42. 11 October 2013 - Two thirds through. Kidney impairment.
I finished week 32 today!
At the last lot of blood tests (Monday this week), my eGFR (estimated glomerular filtration rate), which approximates kidney function, was down one point down to 73, from 74 two weeks ago. Normal is above 90, and for the first few months of treatment, it didn't drop below 88, then suddenly it dropped to 76, 74, 73. It seems to have stabilised, so no crisis, I think.
I asked the nurse about it at the hospital. I wasn't all that convinced by her answer, but I don't think that the research has been done. She said that it was because the ribavirin had built up to such a level that my body was having trouble clearing it, and that if I had a normal liver it would clear it no problems, but because of my liver condition it can't cope with the amount of ribavirin. Well that sounds like nonsense to me since my liver had very little damage before I started treatment, my liver enzymes have shown as normal ever since I started treatment, and at an appointment I had with an osteopath a couple of weeks ago he said my liver was not inflamed at all, after giving it a good squish. And also, because in the study I found they said kidney impairment had not been a problem with dual therapy - it was a new issue with the triple therapy - so it must be something to do with the boceprevir, not just the ribavirin. So... But the bit I trusted was that she said that in their experience, they can address it by reducing someone's ribavirin dose, which I'd be fine with if it's necessary, as I'm still on 1000mg.
She said it wasn't damaging my kidneys. But I wonder how they know? From the research I found online, kidney problems were not noted as a side effect to the boceprevir or telaprevir during the trial phase, but have been found to be a side effect now that the drugs are being used. Because it wasn't noted as a side-effect during the trials it hasn't been fully investigated and they don't have much data on it. But in the study abstract (http://www.ncbi.nlm.nih.gov/pubmed/23813604) it says that there were instances of kidney failure in the French early access program. Another thing is that it's pretty difficult to tell how damaged kidneys are from general blood tests, they normally work well until they are really quite damaged and then the function drops off quite sharply (this is my understanding - I'm not a doctor); they don't heal like livers do either.
You are going to think that I'm mad, but there's another thing that could be skewing the blood test results. eGFR, the test they use, measures the amount of creatinine in the blood. My understanding (based on wikipedia) is that creatinine is released at a fairly standard rate as a natural bi-product of normal muscle processes, creatinine is a breakdown product of creatine phosphate, which is found in muscle. So they can estimate how well your kidneys are filtering and clearing toxins by the amount of creatinine in your blood. But the calculation isn't accurate for people who have unusual muscle mass for their height, weight, age and gender - the examples given are because they are missing a limb or are suffering from a muscle wasting disease - and this is where you are going to think I'm mad; I've been doing weights a couple of times a week, the whole point of which is to cause muscle damage (by over stressing the muscle a bit) to stimulate muscle growth - so that will mean I've got more creatinine in my blood than would be expected. I asked the nurse about this. She said it "shouldn't have an impact", I think maybe she just wasn't really thinking about it in that way or prepared for the question. My eGFR results started to drop almost exactly when I started doing more weights...
Anyway - I can't do much except be as kind on my kidneys as I can be, and if it gets any worse they can address it by reducing my ribavirin dose.
So I am instigating "Operation Kidney Assist" - (I know, silly and overblown, but I find it easier to over-engage). This means:
- no vitamins or any unnecessary pills
- body brushing on my four weekly non-work days (I can't get up in time on work days)
- having hot water with a slice of lemon in first thing in the morning on non-work days
- having asparagus at least once a week
- drinking even more water, at least 3L a day
- trying to avoid sugar.
I have more blood tests in two weeks time, so I'll keep it up until then and see how it goes.
The hospital got my prescription wrong again - they hadn't prescribed me any Boceprevir, forgetting that I was a prior non-responder so should be prescribed it until week 48. It doesn't fill one with confidence. I was so tempted not to say anything - it would be lovely to stop taking them. I'm on the full dose for the duration though. Am going to do everything I can!
Saturday, 14 September 2013
41. 14 September 2013 - The end of week 28 - break from blogging
It was the end of week 28 yesterday.
So far, it's going as well as can be hoped. I was still undetectable at week 24, halfway, so now it's just the long slog to the end.
I'm still neutropenic, so they've increased my Lenograstim dose to every five days, rather than once a week.
Apart from that, my blood tests are all ok. I'm a little bit anaemic, my platelets have dropped but not to dangerous levels, my liver function tests are all normal. My eGFR (kidney function) has dropped a bit, but at the moment it's not a problem.
The main battle is psychological. I am out of steam, and have difficulty motivating myself to do anything. The more I do the better I feel, but I am, more and more, acting based on emotion rather than what is rational. Rationality seems a long way away. So, I have become pretty short-term-ist - I do what needs doing that day, and what will give me instant positive feedback, otherwise I sleep.
Which is why I've not been posting here. I don't feel the need to come and express my feelings, as treatment is now mundane. I'm not frightened anymore, just tired. I get no feedback from this blog. And it's also pretty much defunct; I expect that we are the last group who will do this triple therapy; in 12 months time there will be interferon free treatment regimes. Do those instead!
A couple of things - throw out anything that you could possibly re-infect yourself from. Change your toothbrush, razors etc. regularly. In the last couple of weeks I have accidentally stabbed myself with an old craft knife and, stupidly, used an old pin to get out an ingrowing hair. I can't believe I have risked my treatment success by exposing myself to possible reinfection. If my brain worked, I wouldn't have done, but it doesn't - I live in a fog.
Secondly - exercise!
I will post again eventually, maybe when treatment is over and I know the outcome, maybe before then.
To anyone else going through this - I cyber-squeeze your hand to say yes, it's hard, you are doing so well, thank you for sharing it with me.
So far, it's going as well as can be hoped. I was still undetectable at week 24, halfway, so now it's just the long slog to the end.
I'm still neutropenic, so they've increased my Lenograstim dose to every five days, rather than once a week.
Apart from that, my blood tests are all ok. I'm a little bit anaemic, my platelets have dropped but not to dangerous levels, my liver function tests are all normal. My eGFR (kidney function) has dropped a bit, but at the moment it's not a problem.
The main battle is psychological. I am out of steam, and have difficulty motivating myself to do anything. The more I do the better I feel, but I am, more and more, acting based on emotion rather than what is rational. Rationality seems a long way away. So, I have become pretty short-term-ist - I do what needs doing that day, and what will give me instant positive feedback, otherwise I sleep.
Which is why I've not been posting here. I don't feel the need to come and express my feelings, as treatment is now mundane. I'm not frightened anymore, just tired. I get no feedback from this blog. And it's also pretty much defunct; I expect that we are the last group who will do this triple therapy; in 12 months time there will be interferon free treatment regimes. Do those instead!
A couple of things - throw out anything that you could possibly re-infect yourself from. Change your toothbrush, razors etc. regularly. In the last couple of weeks I have accidentally stabbed myself with an old craft knife and, stupidly, used an old pin to get out an ingrowing hair. I can't believe I have risked my treatment success by exposing myself to possible reinfection. If my brain worked, I wouldn't have done, but it doesn't - I live in a fog.
Secondly - exercise!
I will post again eventually, maybe when treatment is over and I know the outcome, maybe before then.
To anyone else going through this - I cyber-squeeze your hand to say yes, it's hard, you are doing so well, thank you for sharing it with me.
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.
Tuesday, 23 July 2013
39. 23 July 2013 - Week 21
There haven't been any dramatic changes over the past few weeks, a gentle worsening in how I feel.
One thing, as you can tell, is that I'm much less communicative. I can't think of what to say. I feel dull. It's not a big deal, it just means that I don't really enjoy conversation or writing, it takes a lot of concentration and energy, and even then I'm not very good at it. So I'm getting so that, on balance, I tend not to call/write/speak.
Work is taking me much longer than usual, because I keep forgetting what I'm doing. And also I'm making more mistakes, because I can't hold a complex concept in my mind. So I have to work by trial and error in little pieces. Still I am making progress. I started working from home, to try and keep up. In some ways I feel useful and on top of things, and on the other I feel exhausted and overwhelmed.
There's been a heat wave here in the UK. I pretty much have to hide from the sun. Just 15 minutes strong sunlight gives me a rash, even with factor 50 suncream on. That's less time than it takes to walk to the shop back.
I'm much less motivated now about my treatment as well. I don't keep up with my stickers, I'm into the swing of taking the medication now. So far I think I've missed a couple of Ribavirin doses, but that's it. It's just little things like; I moisturise my skin less often than before, and I don't floss my teeth everyday to keep them meticulously clean. Partly it's because I think I'm tolerating the medication a bit better, now that I'm on the Lenograstim and that's keeping up my white blood cell count (to some extent). On the other hand it's because I've lost the drive to do much really, including exercise.
To keep me going at work during the longer days that I've been working (I'm really busy at the moment) I've been eating sweet things: biscuits, ice cream, cake. Unsurprisingly, I've put on about a stone in weight. I'm not happy about this, I feel unattractive, which isn't helping my confidence. I am worried that my boyfriend will go off me, not because I've put on weight, but because I'm no fun. On the other hand, not feeling good in myself doesn't help. But I, so far, show no signs of tackling it. I don't want to deprive myself of one of the few things that is a pleasure that I can do.
Feeling sorry for myself? I am a bit, definitely. Just coming up to halfway, three weeks until I get there. It seems like such a long time to go till the end of February.
I'm seeing my GP on Friday, as a first step to trying to get some support in place to keep me going to the end of treatment. I'll raise it with the nurse at the hospital as well.
Something that my boyfriend suggested, which I think is a really good idea (I haven't got round to it yet) is to set up rewards for reaching certain waymarks. For example, when I get to 24 weeks, we're going out to dinner. I think I should plan a treat for every four weeks I get through, up until the end of treatment.
I planned the start of treatment and my preparation for treatment meticulously. But I haven't planned the end of treatment, or what I'm going to do after treatment. And I think that would really motivate If I could lay out plans fair things I want to do afterwards; reducing my antidepressant dose, starting do more exercise. And also I feel like I want a proper holiday booked for after treatment finishes. Two weeks in Spain; learning Spanish, exploring… a real adventure.
That's me. I hope you're doing well.
Tuesday, 2 July 2013
38. 2 July 2013 - into the twilight zone
Hi, it's been a while since I've been blogging. There have been a few reasons for this:
Firstly, it's because I've been either busy or asleep. A couple of weeks ago I had a massage, which was lovely, nurturing, but it made me feel just how tired I've got. For days afterwards I didn't feel like doing anything. And then I started to feel more ill, more down, more short of energy, which was miserable.
I don't know what happened, but something inspired me to go for a swim. It made such a difference to how I felt, that ever since I've been trying to do as much exercise as I can. It wears me out though. This is another reason I have not been been blogging. i've been too tired.
I've found the solution to the swimming rash, is to cover myself in Aveeno before I go in, and then shower twice when I get out, once with anti-chlorine wash and once with Aveeno shower oil, and then cover myself in Aveeno lotion.
I've been acting unlike me. Spending a fortune on the things that I want, rather than waiting to save up. I bought some software to learn Spanish. I've upgraded my drawing software. I'm doing the things that matter to me.
This last weekend we went to the Forest of Dean. It's just an hour's drive away from where we live, so that wasn't too stressful or tiring. We stayed in a B&B, but in a little lodge in the back garden; not much more than a bed, shower room, and a sink really, but we like to have our own front door when we go away.
On the Saturday we went cycling. We hired bikes from Pedalbikeaway, and cycled the family cycle trail round the woods. It was at such a glorious day, sunshine and a gentle breeze. It felt like the air in the woods was drinkable; cool, clear and full of oxygen.
We took it pretty easy for the weekend. Everything takes such a long time now. It took as until midday on the Friday to get packed up and out; making sure I had everything I needed: my medicine, clothes to keep the sun off my skin, sunblock, my snacks for eating with my drugs.
We cycled 16 miles on Saturday, and possibly a few more on detours when we went wrong. We weren't even cycling that slowly. All the work I've been doing in the gym, going swimming, meant that I could enjoy it. By the end of the day I was absolutely shattered though. I felt just as tired as when, many years ago, I did a sponsored 28 mile walk. But after showering, dinner and some stretching, I was okay. The next day we went to Tintern Abbey and sat in the shade and had a picnic. I was tired. I'm still tired now. But I can at least live my life, as well as do this treatment.
The second reason why this why haven't been blogging much is less positive. Everything is getting, well, weird really. When I sleep, I have strange and frightening dreams, and they follow me into the day. I feel isolated. I feel I'm never really awake, and never really asleep, I'm shifting into the twilight zone. That sounds a bit dramatic, but it is very strange feeling. I'm probably not sleeping well enough, but I'm already taking Sleepeaze two nights a week and valerian two nights a week, I don't want to take any more sleeping pills than that.
At work, I don't know how I'm doing. On the one hand, I know that personally I am doing brilliantly just to get there in the morning on time and spend the day positively working. But I seem to be completely unable to judge how much work I have got to do, whether I'm anywhere near meeting my deadlines. I just do the next task, and then at the end of the day go home. I have to blindly hope that things are going okay because my brain is so unclear, so blank, I can't see the bigger picture. But I'm also not bothered about it!
Sunday, 9 June 2013
37. 9 June 2013 - Feeling quite "normal"
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?
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?
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.
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, 14 May 2013
26. 14 May 2013 - An unpleasant development
On Sunday night I broke my rules, and had fruit with my Boceprevir. I stewed some apples with berries for pudding, and took my pills with it. Mistake! Ever since I have had a delicate stomach, and, blurgh - diarrhoea.
There's something undermining about having to worry about making it to the loo in time at 36 years of age. I'm going to a wedding on Saturday. I really hope I don't have to make a run for it in the middle of the ceremony. Hopefully, the nurse will have got back to me with a remedy before then.
There's something undermining about having to worry about making it to the loo in time at 36 years of age. I'm going to a wedding on Saturday. I really hope I don't have to make a run for it in the middle of the ceremony. Hopefully, the nurse will have got back to me with a remedy before then.
Saturday, 11 May 2013
25. 11 May 2013 - Clinical Care Options website
The Clinical Care Options website is an excellent source of hepatitis C treatment information, and you can sign up for free.
They publish slides from their conferences on the clinical trial results for the new medicines, and training modules. For example, today they emailed me a link to a training module for hepatitis nurses on preparing patients for triple therapy and preventing adverse events.
They publish slides from their conferences on the clinical trial results for the new medicines, and training modules. For example, today they emailed me a link to a training module for hepatitis nurses on preparing patients for triple therapy and preventing adverse events.
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