Another extra side effect of the treatment seems to be materialising. That is a sweet tooth. I have rarely eaten sweets and have not had sugar in tea and coffee for years. But I have cravings for toffee and, from time to time chocolate bars, especially Toblerone. I do eat them, if guiltily - although not too guiltily as my overall weight has dropped from about 12.5 stones to about 11.8 stones.
Driving has been fine - I do find I have to extra careful in double and treble checking when pulling out - but that is not because I have slowed down but just to be extra sure that my perception of distance and speed etc has not changed without me realising it.
Had a very heavy three days at work, including two major presentations to big audiences. Both went well, and I was certainly far too busy to even think about my treatment. In both presentations I managed to keep the cough at bay, although it came back with a vengeance for a short period this morning.
I find I can walk up and down stairs, or London Tube escalators, without feeling hugely tired, but anything involving lifting things (or as last weekend, sawing branches) saps my energy like a drain.
Have kept the irritability at bay over the last couple of days - mainly by keeping quiet and by physically moving from a situation when I feel myself starting to get cross.
After I have my injection tonight I will have an early night.
Thursday, 28 June 2007
Monday, 25 June 2007
Day 39 (25 June '07) Jon's Hepatitis C Treatment
On Sunday I decided to cut some laurel bushes - an easy enough task, or so I thought. As I was sawing back some of the overhanging branches I felt tireder and tireder, as if energy was just draining away from me. Determined to finish the job, I took it a lot easier and duly finished it. But that was salutary - I am finding physical work or exercise more tiring and I get puffed out quickly. Still, as I found out today, I can still walk up the London Tube escalator two steps at a time!
I slept for two periods of about 45 minutes on Sunday at different parts of the day and felt better for it. Even so, I felt irritable from time to time and a couple of times I felt the "rage" welling up - I have tried to train myself just to lie down when this happens. My family recognises it for what it is and are supportive here.
Today (Monday) I was too busy at work to notice the Hepatitis C treatment effects - one meeting after another. I still have the hacking cough but am learning to control it more so it doesn't intrude nearly so much. I was then in London for more meetings, getting home about 11pm. I have two keynote presentations to do in two days (tomorrow evening and Wednesday morning) so the Hepatitis C will have to wait on hold! Seriously, though, I am pacing myself as much as possible.
Interestingly, I keep meeting people of my age who have been told by their doctor either not to drink alcohol at all for a variety of medical reasons, or to cut down drastically. That is making it easier for me to totally avoid drinking (for me at time, when faced with a vintage port, refusing alcohol is the worst side effect of the treatment!).
I slept for two periods of about 45 minutes on Sunday at different parts of the day and felt better for it. Even so, I felt irritable from time to time and a couple of times I felt the "rage" welling up - I have tried to train myself just to lie down when this happens. My family recognises it for what it is and are supportive here.
Today (Monday) I was too busy at work to notice the Hepatitis C treatment effects - one meeting after another. I still have the hacking cough but am learning to control it more so it doesn't intrude nearly so much. I was then in London for more meetings, getting home about 11pm. I have two keynote presentations to do in two days (tomorrow evening and Wednesday morning) so the Hepatitis C will have to wait on hold! Seriously, though, I am pacing myself as much as possible.
Interestingly, I keep meeting people of my age who have been told by their doctor either not to drink alcohol at all for a variety of medical reasons, or to cut down drastically. That is making it easier for me to totally avoid drinking (for me at time, when faced with a vintage port, refusing alcohol is the worst side effect of the treatment!).
Saturday, 23 June 2007
Day 37 (23 June '07) Jon's Hepatitis C Treatment
I welcome the weekends - not so much for any lay-in, but because it is much easier just to go and have a lie down for half an hour or so and get up refreshed ready to tackle the world.
I have kept the work going - there is one very interesting development thing I am doing, in addition to a number of events and activities that I am organising.
Next week I have to give two brief presentation to major events, so am trying to get my head round preparing for those. I have been getting a bit slower - it's not that easy to measure, but it hit me last week (in my quiet period of blogging) when a new activity was thrown my way with the expectation I'd somehow fit it in - that is not so readily possible now.
Although I cannot rest during the day when I'm at work, I do find that I don't have time to think about Hepatitis C - except for when the dry, convulsive, asthmatic type cough hit me, usually when I change activities, move rooms, or sit down to a lunch. People in my large open plan office are sympathetic right now (they don't know I am undergoing Hepatitis C treatment),and are putting it down to a lingering cold. I might have some explaining to do if it carries on for months! Still, I am aiming to take things one day at a time.
Otherwise today (Saturday) has involved the usual routine of ferrying children to various activities, and I have managed to do the vacuuming (a bit more coughing!) and a bit of cleaning. My family is being less demanding on my domestic chores (I never was the best at doing them!), but I really do want to pull my weight here.
I have kept the work going - there is one very interesting development thing I am doing, in addition to a number of events and activities that I am organising.
Next week I have to give two brief presentation to major events, so am trying to get my head round preparing for those. I have been getting a bit slower - it's not that easy to measure, but it hit me last week (in my quiet period of blogging) when a new activity was thrown my way with the expectation I'd somehow fit it in - that is not so readily possible now.
Although I cannot rest during the day when I'm at work, I do find that I don't have time to think about Hepatitis C - except for when the dry, convulsive, asthmatic type cough hit me, usually when I change activities, move rooms, or sit down to a lunch. People in my large open plan office are sympathetic right now (they don't know I am undergoing Hepatitis C treatment),and are putting it down to a lingering cold. I might have some explaining to do if it carries on for months! Still, I am aiming to take things one day at a time.
Otherwise today (Saturday) has involved the usual routine of ferrying children to various activities, and I have managed to do the vacuuming (a bit more coughing!) and a bit of cleaning. My family is being less demanding on my domestic chores (I never was the best at doing them!), but I really do want to pull my weight here.
Friday, 22 June 2007
Day 36 (22 June 2007) Jon's Hepatitis C Treatment
This is the first blog for seven days! Firstly, I had thought that my side effects were mild and becoming boring to report. However over this week I have discovered what effect the treatment is beginning to have - more psychological than physical.
As I say in my previous postings I have got off very lightly on the physical symptoms side - the crushing tiredness at times and a but woozy at others - but nothing that a quick horizontal lie-down doesn't help.
However, I have become very irritable. I had not noticed this creeping up - it was family who warned me. At times I feel very claustrophobic - for example, if there are too many people in a too confined space buzzing around. I just feel the need to get out. But I also feel the need to express my irritability verbally, and have at times been quite rude. That has spilled into work too - particularly when under pressure or confronted with some nonsense - I have fired at least a couple of emails off from the hip which I reretted.
Now that I fully appreciate what is happening and more aware of the warning signs, I am making especial efforts to not respond, to wait 15 minutes before doing anything, writing drafts of emails first and then waiting. All the time I tell myself - this is not me - this is the reatment.
The other thing I've picked up over the past two weeks is a hacking cough - I mention it in some of the earlier postings. From talking to people it appears to be an asthmatic type cough - I have this rasping dry cough when I move from one room to another or encounter diferent air temperatures. It's about once every ten minutes or so. I have never been asthmatic - and it is beginning to look as if this is part of the treatment side effects. On principle though I will not take anything for it just yet.
Otherwise the sixth injection was smooth - am beginning to dread it a bit, but bite my lip and continue.
Will write again when I have something to report.
As I say in my previous postings I have got off very lightly on the physical symptoms side - the crushing tiredness at times and a but woozy at others - but nothing that a quick horizontal lie-down doesn't help.
However, I have become very irritable. I had not noticed this creeping up - it was family who warned me. At times I feel very claustrophobic - for example, if there are too many people in a too confined space buzzing around. I just feel the need to get out. But I also feel the need to express my irritability verbally, and have at times been quite rude. That has spilled into work too - particularly when under pressure or confronted with some nonsense - I have fired at least a couple of emails off from the hip which I reretted.
Now that I fully appreciate what is happening and more aware of the warning signs, I am making especial efforts to not respond, to wait 15 minutes before doing anything, writing drafts of emails first and then waiting. All the time I tell myself - this is not me - this is the reatment.
The other thing I've picked up over the past two weeks is a hacking cough - I mention it in some of the earlier postings. From talking to people it appears to be an asthmatic type cough - I have this rasping dry cough when I move from one room to another or encounter diferent air temperatures. It's about once every ten minutes or so. I have never been asthmatic - and it is beginning to look as if this is part of the treatment side effects. On principle though I will not take anything for it just yet.
Otherwise the sixth injection was smooth - am beginning to dread it a bit, but bite my lip and continue.
Will write again when I have something to report.
Friday, 15 June 2007
Day 28 (14 June '07) Jon's Hepatitis C Treatment
This is becoming somewhat repetitive - but a similar day to any other - just that heaviness in the background and the late night deep tiredness. Thinking about a work issue kept me awake a lot - this is very unusal for me, so I must ensure things are resolved before leaving work.
Had my fifth injection this evening and slept solidly (having resolved the work problem at work during the day).
Am thinking about only reporting on this blog when there are significant changes or developments, but will daily reporting for a while longer.
Had my fifth injection this evening and slept solidly (having resolved the work problem at work during the day).
Am thinking about only reporting on this blog when there are significant changes or developments, but will daily reporting for a while longer.
Wednesday, 13 June 2007
Day 27 (13 June 2007) Jon's Heptitis C Treatment
A good night's sleep - the usual heaviness on waking up.
Went to the hospital for regular specialist's appointment. Saw a different specialist today who is a colleague of my one - the practise likes everyone to see everyone. Being only a month into treatment it's early days - too early to assess from the blood tests yet about any impact treatment is having. We had an interesting chat and he said that in our area the success rate for Genotype 1 treatment is high - 60% to 65%, compared to the average 40%-50%. Here's hoping!
We talked about how I may have picked up Hepatitis C but no further ahead on that.
Picked up the next month's prescription of Interferon and Ribavirin.
Then to work and a busy day.
Went to the hospital for regular specialist's appointment. Saw a different specialist today who is a colleague of my one - the practise likes everyone to see everyone. Being only a month into treatment it's early days - too early to assess from the blood tests yet about any impact treatment is having. We had an interesting chat and he said that in our area the success rate for Genotype 1 treatment is high - 60% to 65%, compared to the average 40%-50%. Here's hoping!
We talked about how I may have picked up Hepatitis C but no further ahead on that.
Picked up the next month's prescription of Interferon and Ribavirin.
Then to work and a busy day.
Day 26 (12 Jun '07) Jon's Hepatitis C Treatment
Woke again feeling a bit heavy and slightly queasy. I have taken to drinking hot water which works well for me. Couldn't face cereal so had just toast and marmelade. Productive day at the office - too busy to think about the treatment.
Tired by the evening though - had a craving for Emmenthal cheese!
Tired by the evening though - had a craving for Emmenthal cheese!
Monday, 11 June 2007
Day 25 (11 Jun '07) Jon's Hepatitis C Treatment
Another workday. Another heavy day - a bit like the heaviness you feel with jetlag, but with an underlying queasiness. I only really wanted to eat "yin" foods - light foods. Still have a hacking dry cough, but it's not too bad, more of a nuisance.
Was tired especially by evening.
Was tired especially by evening.
Sunday, 10 June 2007
Day 24 (10 Jun '07) Jon's Hepatitis C Treatment
Had a good 10 hour sleep. Felt a bit guilty as I know that others taking treatment right now are having a lot of difficulty sleeping. I am now under 12 stone. Since starting treatment I have lost a few pounds, except my midriff is as big as ever (although that's no bad thing as that\s my preferred injection spot each Thursday!
Helped at my son's football tournament - my role was guiding cars in and being a general dogsbody helper. It was great - 100 or so kids who would otherwise have nothing much to do on a Sunday. I make sure that at events like this I take no part in giving out food or any associated activity. This is a basic preventative precaution and also one of perception too. I am ultra senstive about passing on the Hepatitis C, although I know that in normal circumstances it should be no problem.
Was disappointed not to be able to attend a artists' open studio in London. The football tournament was only finalised late on and I had hoped to see in one studio the work of a friend who has Hepatitis C - I particularly wanted to see in the art, the impact of being diagnosed with Hepatitis C. Some other time...
Took time out to go home for a two hour sweaty and restless nap.
I wonder if my relatively mild reaction to the combined treatment is due in part to my only having Hepatitis C mildly. The National Institute for Clinical Excellence (NICE) intends later this year to review its new policy of allowing treatment for those with mild Hepatitis C. I would expect NICE to collect robust statistics to correlate advancement of Hepatitis C with severity of treatment side effects as well as with overall results.
By evening felt tired and groggy again, but gained a bit of second life writing up the last two days' blogs.
Helped at my son's football tournament - my role was guiding cars in and being a general dogsbody helper. It was great - 100 or so kids who would otherwise have nothing much to do on a Sunday. I make sure that at events like this I take no part in giving out food or any associated activity. This is a basic preventative precaution and also one of perception too. I am ultra senstive about passing on the Hepatitis C, although I know that in normal circumstances it should be no problem.
Was disappointed not to be able to attend a artists' open studio in London. The football tournament was only finalised late on and I had hoped to see in one studio the work of a friend who has Hepatitis C - I particularly wanted to see in the art, the impact of being diagnosed with Hepatitis C. Some other time...
Took time out to go home for a two hour sweaty and restless nap.
I wonder if my relatively mild reaction to the combined treatment is due in part to my only having Hepatitis C mildly. The National Institute for Clinical Excellence (NICE) intends later this year to review its new policy of allowing treatment for those with mild Hepatitis C. I would expect NICE to collect robust statistics to correlate advancement of Hepatitis C with severity of treatment side effects as well as with overall results.
By evening felt tired and groggy again, but gained a bit of second life writing up the last two days' blogs.
Day 23 (9 Jun '07) Jon's Hepatitis C Treatment
Got up early to leave confrence and drive home for 9am. Felt very heavy and wooden all day with an underlying queasiness and developed a hacking dry cough. Did some homework during the day and had a two and a half hour sleep in the afternoon. Felt better and well armed for a social bridge session.
Friday, 8 June 2007
Day 22 (8 Jun 07) Jon's Heptatitis C treatment
I was surprised that when I woke up around 7.30am that I seemed pretty normal, apart from a bit of heaviness. Had a busy schedule at the conference again. From time to time had a slight pain in my chest but it soon went away. The throat is back to normal and OK now. I have surprised myself - I thought that I would be a semi-invalid at this conference, but everything has gone well. I haven't even felt irritable in the last two days!
Had some excellent food put in front of me at the conference but I only picked at it. It have tried to eat as nutritiously as possible. Felt very heavy and a bit queasy by the end of the evening and went to bed early.
Had some excellent food put in front of me at the conference but I only picked at it. It have tried to eat as nutritiously as possible. Felt very heavy and a bit queasy by the end of the evening and went to bed early.
Day 21 (7 Jun 07) Jon's Heptitis C Treatment
Had a hectic day at a major conference. Felt a bit woozy at times but did my best to take things easy. The day sped by and I felt almost normal. Had put my Interferon syringe in the fridge in my room and took my fourth injection later at night, followed by my three Ribavirin tablets. It all went smoothly. It crashed out and slept pretty soundly till 7.30am.
Wednesday, 6 June 2007
Day 20 (6 Jun '07) Jon's Hepatitis C Treatment
Had to get up at 6am for an early conference meeting in central London. Head was swimming a bit and felt a bit heavy, but putting the final touches to my paper on the train and walking to the venue in the sunshine helped my sublime any symptoms. Everything went well at the event and I came home early to prepare for another conference - this time a three day event away from home. This is a bit daunting, especially as I have to take my injector with me and keep it cool ready for my Thursday injection tomorrow.
Am determined to take it easy at the conference and monitor myself carefully.
Am determined to take it easy at the conference and monitor myself carefully.
Day 19 (5 Jun '07) Jon's Hepatitis C Treatment
Slept well, and had a good day, apart from one or two dizzy spells and feeling a bit wooden. Fely crushingly tired by the later evening though. Managed a productive day at work - prepared my conference paper for tomorrow -but did get irritable once at work. I must keep the lid on that!
Tuesday, 5 June 2007
Day 18 (4 Jun 07) Jon's Hepatitis C Treatment
Did not sleep so well - kept waking up but did feel refreshed by morning. Felt heavy and a bit dizzy.
I am keeping at work during my treatment - people at the focus group I attend say that working helps, if you can manage it. I seem to be able to cope, except I do feel strong irritation bubbling inside me when I come across nonsense or short-sighted behaviour. I have to tell myself to count to ten and not fire from the hip!
Attended my monthly focus group this evening. I am not able to say anything specific about this except to say that it is a tremendous support group, organised by the Heptatitis C Trust, which does a fantastic amount for Hepatitis C sufferers in the UK on very slender resources. The composition varies each month but there are always regulars and people who come from time to time. The breadth of experience is very wide. Several types of Hepatitis C are represented, the most common being the hardest to cure, genotype 1 - like mine.
Among the people I have met with Hepatitis C over the last few months there has always been a debate about whether or not to have treatment. The Interferon and Ribavirin combination affects different people in different ways and some would prefer to tackle natural palliatives, such as herbal treatment, or to wait until a more assured, and less body battering treatment comes up, especially for genotype 1. There are strong hopes for the VX950 experimental treatment right now - having met someone who successfully cleared genotype 1 in only a few weeks, and who reported a strong success in the trial, I am very optimistic about this. I was not prepared to wait. Treatment though is an invidual decision.
The Hepatitis C Trust offers support to everyone and not judgemental about whether or not to have treatment. One facility the Trust offers, which is very comforting, is a patient advocacy service. I know that my treatment will be reviewed after three months. The current National Institute for Clinical Excellence (NICE) guidelines say that this should happen. After three months there is a qualititative PCR test, which is a viral load test to see if treatment is working, in terms of lowering the viral load. It is if there are any question marks in this area that the advocacy service could be a great help. But for me that is still some way off.
Several people I know with Hepatitis C suffer terrible itching. There are various remedies, well documented on the Hepatitis C Trust website (www.hepcuk.info), but ones I have heard recommended by word of mouth include a product called Oil Ulate, which you put in the bath. Also lavender oil in the bath is recommended. One remedy I am keen to try at some stage is shey butter, a West African remedy from the shey tree. My itching is just minor and a dab of antiseptic cream seems to do the trick at the moment.
I have debated with myself whether or not to take the herbal remedy Milk Thistle, which is good for the liver. There is information from herbalist Claudia Lauch and others on the Hepatitis C Trust site. I have decided not to use it at present during treatment but to re-evaluate this decision in the future.
One food that I have tried to have a lot of is smoothies. I am trying to ensure I am getting plenty of natural Vitamin C - and making up a smoothie on the blender is a good and very palatable way of doing that.
It is very sobering but of the people I have met having treatment I certainly seem to be suffering the least, which puts everything in this blog into perspective.
I am keeping at work during my treatment - people at the focus group I attend say that working helps, if you can manage it. I seem to be able to cope, except I do feel strong irritation bubbling inside me when I come across nonsense or short-sighted behaviour. I have to tell myself to count to ten and not fire from the hip!
Attended my monthly focus group this evening. I am not able to say anything specific about this except to say that it is a tremendous support group, organised by the Heptatitis C Trust, which does a fantastic amount for Hepatitis C sufferers in the UK on very slender resources. The composition varies each month but there are always regulars and people who come from time to time. The breadth of experience is very wide. Several types of Hepatitis C are represented, the most common being the hardest to cure, genotype 1 - like mine.
Among the people I have met with Hepatitis C over the last few months there has always been a debate about whether or not to have treatment. The Interferon and Ribavirin combination affects different people in different ways and some would prefer to tackle natural palliatives, such as herbal treatment, or to wait until a more assured, and less body battering treatment comes up, especially for genotype 1. There are strong hopes for the VX950 experimental treatment right now - having met someone who successfully cleared genotype 1 in only a few weeks, and who reported a strong success in the trial, I am very optimistic about this. I was not prepared to wait. Treatment though is an invidual decision.
The Hepatitis C Trust offers support to everyone and not judgemental about whether or not to have treatment. One facility the Trust offers, which is very comforting, is a patient advocacy service. I know that my treatment will be reviewed after three months. The current National Institute for Clinical Excellence (NICE) guidelines say that this should happen. After three months there is a qualititative PCR test, which is a viral load test to see if treatment is working, in terms of lowering the viral load. It is if there are any question marks in this area that the advocacy service could be a great help. But for me that is still some way off.
Several people I know with Hepatitis C suffer terrible itching. There are various remedies, well documented on the Hepatitis C Trust website (www.hepcuk.info), but ones I have heard recommended by word of mouth include a product called Oil Ulate, which you put in the bath. Also lavender oil in the bath is recommended. One remedy I am keen to try at some stage is shey butter, a West African remedy from the shey tree. My itching is just minor and a dab of antiseptic cream seems to do the trick at the moment.
I have debated with myself whether or not to take the herbal remedy Milk Thistle, which is good for the liver. There is information from herbalist Claudia Lauch and others on the Hepatitis C Trust site. I have decided not to use it at present during treatment but to re-evaluate this decision in the future.
One food that I have tried to have a lot of is smoothies. I am trying to ensure I am getting plenty of natural Vitamin C - and making up a smoothie on the blender is a good and very palatable way of doing that.
It is very sobering but of the people I have met having treatment I certainly seem to be suffering the least, which puts everything in this blog into perspective.
Saturday, 2 June 2007
Day 17 (3 Jun 07) Jon's Hepatitis C Treatment
Had a good sleep and settled in for a quiet Sunday....
Have a bit of a sore throat and a bit of difficulty swallowing - it's been with me for a couple of days but only gradually impinging itself. Am determined to hold out as long as possible against taking any extra medication for it though!
Have been a bit irritable from time to time but no only major symptoms. Felt very leaden by about 9pm when I went to bed with the usual Ribavirin tablets.
Have a bit of a sore throat and a bit of difficulty swallowing - it's been with me for a couple of days but only gradually impinging itself. Am determined to hold out as long as possible against taking any extra medication for it though!
Have been a bit irritable from time to time but no only major symptoms. Felt very leaden by about 9pm when I went to bed with the usual Ribavirin tablets.
Day 16 (2 Jun 07) Jon's Hepatitis C Treatment
Woke feeling headachy and a bit groggy, and a bit of a heavy throat, but determined not to take anything for it. Quickly settled into the day and carried through to evening when I had a half hour lie down and then out to some friends and back latish.
Did a quick review of progress to date, going through the side effects I was warned about.
I have not lost my appetite; my skin does itch a bit in places, but not uncontrollably; I sweat a bit from time to time but not inordinately; I sometimes have a bit of a disturbed sleep and often wake up about 2am, but I do not suffer insomnia and I usually get back to sleep fairly quickly using yoga breathing; I do feel wooden and tired from time to time, especially at the end of the day; so far, the treatment has not affected my work, and I have not had to take any time off (apart from going to the hospital appointments.
So, so far, so good. But it is still early days.
Did a quick review of progress to date, going through the side effects I was warned about.
I have not lost my appetite; my skin does itch a bit in places, but not uncontrollably; I sweat a bit from time to time but not inordinately; I sometimes have a bit of a disturbed sleep and often wake up about 2am, but I do not suffer insomnia and I usually get back to sleep fairly quickly using yoga breathing; I do feel wooden and tired from time to time, especially at the end of the day; so far, the treatment has not affected my work, and I have not had to take any time off (apart from going to the hospital appointments.
So, so far, so good. But it is still early days.
Friday, 1 June 2007
Day 15 (1 Jun 07) Jon's Hepatitis C Treatment
Got up 7.30am. Apart from a slight heaviness, I feel fine and felt fine all day. I keep asking myself: "Am I getting off lightly so far?" - although I am well aware there is a long way to go. By about 10pm I felt very heavy, so took the Ribavirin and crashed out. Woke for about half an hour at 3.00am but otherwise fairly sound sleep.
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