Only had two hours sleep last night - I had to collect one of the kids from a sporting activity near Birmingham, in the middle fo England. I was a 240 mile round trip, getting back late. Then had to inject my Interferon and then pack, for an early flight to Edinburgh.
Do not feel much reaction although I expect it to hit tomorrow. However, will cat-nap during the day today (as long as I don't snore in any of the Edinburgh Fringe festival's activities!!
Will try to keep posting from Edinburgh.
Otherwise, the throad pain and also the abdonimal pain disappeared a couple of days ago - I will have to watch them.
Otherwise nothing notable to report....
Friday, 24 August 2007
Monday, 20 August 2007
Day 93 (20 August '07) Jon's Hepatitis C Treatment
Felt very tired on Sunday. Also two new things became slightly more than irritants. Firstly my throat was very raw and at times I felt it difficult to swallow. The nagging potential worry there is thyroid. I know someone who did the 48 week treatment for Hepatitis C (Genotype 1a) successfully, only to find that he has a lingering thyroid problem as a result of the treatment.
Secondly my midriff area was sore. So I went and lay down several times that day and using the usual trick of focussing on the painful/sore spot and then trying to imagine it away.
Had to drive up to south London oand back (about 45mins), which was not too taxing.
Got angry once on Sunday, when the avocado pears from the supermarket were too hard to eat, and I really wanted one then as it seemed the right thing for my throat.
Was very tired and despite having slept for a one and a half hour session and again for a 45 minute session in the day, I went to bed at 9pm, waking at 6am on Monday - hoping to get enough material together for my report to my manager at 2pm.
Am getting to the point where I am goinf to have to take time off sick from time to time. But hopefully not this week as I only have four days before going on holiday (from Friday to spend a week in Scotland, hitting the tail end of the Edinburgh Fringe festival and then going on to Glasgow looking for the culture that is supposed to be there.
Not quite sure what to do about my Interferon injection pen and the aircraft and also keeping it refrigerated -but will think about that later
Secondly my midriff area was sore. So I went and lay down several times that day and using the usual trick of focussing on the painful/sore spot and then trying to imagine it away.
Had to drive up to south London oand back (about 45mins), which was not too taxing.
Got angry once on Sunday, when the avocado pears from the supermarket were too hard to eat, and I really wanted one then as it seemed the right thing for my throat.
Was very tired and despite having slept for a one and a half hour session and again for a 45 minute session in the day, I went to bed at 9pm, waking at 6am on Monday - hoping to get enough material together for my report to my manager at 2pm.
Am getting to the point where I am goinf to have to take time off sick from time to time. But hopefully not this week as I only have four days before going on holiday (from Friday to spend a week in Scotland, hitting the tail end of the Edinburgh Fringe festival and then going on to Glasgow looking for the culture that is supposed to be there.
Not quite sure what to do about my Interferon injection pen and the aircraft and also keeping it refrigerated -but will think about that later
Saturday, 18 August 2007
Day 91 (18 August '07) Jon's Hepatitis C Treatment
Have just about been keeping my head above water at work - but still have a major report to produce for my boss on Monday morning,
The cough continues and it's only a matter of time before someone at work comments on it and asks if I'm all right. Although I have become quite adept at holding it back.
Am beginning to hate the injections - I do it on Thursday evening, then have the Ribavirin. I'm usually OK on Friday but it hits me on Saturday more and more.
So today I've been tired. But then I had to take two car loads of rubbish and building rubble to the waste tip, then drive up to south London for an hour each way to collect some things. I then had a 90 minute sleep and felt refreshed - just in time to make a collection at the airport to meet up witrh a heavily delayed flight!
I am more tired, and I do see my car driving not being as good as it was. I have to drive more slowly and I get the feeling that my reaction times are slower.
I've found that having a soak in the bath is very helpful. I've also developed a mini-craving for eggs - maybe for the zinc in them?? Anyway, I made a pact with myself that if my body tells me it needs me to eat something, I do. It's along the lines that pregnant women get food cravings, which are, I reckon, to ensure they get the right minerals.
Otherwise not much to report - just hanging in there, trying not to think too much about Heptatitis C and the treatment.
The cough continues and it's only a matter of time before someone at work comments on it and asks if I'm all right. Although I have become quite adept at holding it back.
Am beginning to hate the injections - I do it on Thursday evening, then have the Ribavirin. I'm usually OK on Friday but it hits me on Saturday more and more.
So today I've been tired. But then I had to take two car loads of rubbish and building rubble to the waste tip, then drive up to south London for an hour each way to collect some things. I then had a 90 minute sleep and felt refreshed - just in time to make a collection at the airport to meet up witrh a heavily delayed flight!
I am more tired, and I do see my car driving not being as good as it was. I have to drive more slowly and I get the feeling that my reaction times are slower.
I've found that having a soak in the bath is very helpful. I've also developed a mini-craving for eggs - maybe for the zinc in them?? Anyway, I made a pact with myself that if my body tells me it needs me to eat something, I do. It's along the lines that pregnant women get food cravings, which are, I reckon, to ensure they get the right minerals.
Otherwise not much to report - just hanging in there, trying not to think too much about Heptatitis C and the treatment.
Thursday, 16 August 2007
Day 87 (14 August '07) Jon's Hepatitis C Treatment
No major changes over the last days.
I went to the cricket - the Test match between England and India on Sunday with some friends. That was very restful, just focussing on one thing, and it was a very relaxing day. However I was very tired that evening - probably all the more so as I'd had a stressful Saturday trying to pin down car insurance for a car I was selling.
I think I am feeling more tired during the day- I went to bed really early (9.30pm!) for the last two nights and slept through till 8.30am before going to work. The really positive bit was that I slept throughout the night both times - I am lucky there as I know some people under treatment who don't sleep well.
I know of two artists who have Hepatitis C - I wonder what the impact of having the disease has on creativity - especially the art before and after diagnosis. Of course this could be for any medical condition, but I would be particularly interested in the impact Hepatitis C might have. I like art - but I am certainly no artist myself!
I had a curious experience with itching. Many people suffer itching with the treatment. In my case I had severe itching below my knees before treatement, but it has actually cleared up since treatment. However, recently I have started itching a lot on my upper legs. One piece of advice has been to keep my fingernails short! Also I have been putting BandAid type sticking plaster to keep me away from it.
Now that I am over three months in to treatment, and it may be having more of an impact on my work in the coming months, I am debating whether to give my employers more information. At present I have told two people - my boss and my HR manager - that I am having long term treatment for a liver condition which may impact my work from time to time. They have been very supportive, and I have not lost one day yet. I am planning to let our occupational nurse (employed by my company) know too, and maybe when I get the results in September of the impact of treatment on the viral load I will tell them it's Heptatitis C.
I am concerned about September onwards when our industry picks up after the summer break and about my ability to handle multiple new projects. Still, I will take things day by day.
I went to the cricket - the Test match between England and India on Sunday with some friends. That was very restful, just focussing on one thing, and it was a very relaxing day. However I was very tired that evening - probably all the more so as I'd had a stressful Saturday trying to pin down car insurance for a car I was selling.
I think I am feeling more tired during the day- I went to bed really early (9.30pm!) for the last two nights and slept through till 8.30am before going to work. The really positive bit was that I slept throughout the night both times - I am lucky there as I know some people under treatment who don't sleep well.
I know of two artists who have Hepatitis C - I wonder what the impact of having the disease has on creativity - especially the art before and after diagnosis. Of course this could be for any medical condition, but I would be particularly interested in the impact Hepatitis C might have. I like art - but I am certainly no artist myself!
I had a curious experience with itching. Many people suffer itching with the treatment. In my case I had severe itching below my knees before treatement, but it has actually cleared up since treatment. However, recently I have started itching a lot on my upper legs. One piece of advice has been to keep my fingernails short! Also I have been putting BandAid type sticking plaster to keep me away from it.
Now that I am over three months in to treatment, and it may be having more of an impact on my work in the coming months, I am debating whether to give my employers more information. At present I have told two people - my boss and my HR manager - that I am having long term treatment for a liver condition which may impact my work from time to time. They have been very supportive, and I have not lost one day yet. I am planning to let our occupational nurse (employed by my company) know too, and maybe when I get the results in September of the impact of treatment on the viral load I will tell them it's Heptatitis C.
I am concerned about September onwards when our industry picks up after the summer break and about my ability to handle multiple new projects. Still, I will take things day by day.
Friday, 10 August 2007
Day 83 (10 August '07) Jon's Hepatitis C Treatment
Today brought home some of the mental challenges of the treatment. It started as a normal day - going to work to consolidate a lot of things for Monday morning when my boss returns. However two home related activities intruded as well - one completing the organisation of a social event for Sunday, and the other trying to sort out a Catch-22 anomaly I have trying to get a road tax disc for my car - I won't go into detail but it involved the licensing authorities refusing to accept a fax of the insurance policy I took out yesterday...
I found it trying, and thought I was coping OK when I realised I'd left a document in the licensing office. I had to go back to the office (a five mile return train ride) and it wasn't there! But the good news was that the document was not as important as I'd thought.
But in complex situations like that I am finding it increasingly hard to keep an all round focus and things are slipping a bit at the edges. I keep telling myself it's normal and that many people would have taken the day off sick.
Anyway, the computer's free so I'm writing this, then I'm going for an extended lie-down before helping to prepare for having two relatives here at the weekend, and completing the social arrangements for Sunday.
I found it trying, and thought I was coping OK when I realised I'd left a document in the licensing office. I had to go back to the office (a five mile return train ride) and it wasn't there! But the good news was that the document was not as important as I'd thought.
But in complex situations like that I am finding it increasingly hard to keep an all round focus and things are slipping a bit at the edges. I keep telling myself it's normal and that many people would have taken the day off sick.
Anyway, the computer's free so I'm writing this, then I'm going for an extended lie-down before helping to prepare for having two relatives here at the weekend, and completing the social arrangements for Sunday.
Day 82 (9th August '07) Jon's Hepatitis C Treatment
Felt a bit heady today - that may have had to do with having to walk for about 2.5 miles as I took my car in for service and decided to walk to the station to catch the train to work. I didn't feel too tired when I did it but found it hard to concentrate during the day.
Am just about to have my weekly jab, and on top of that I have an early start tomorrow.... Just a bit of tightness across my chest - but then I have been up late and my injection is a couple of hours overdue - maybe my body is telling me something!
Am just about to have my weekly jab, and on top of that I have an early start tomorrow.... Just a bit of tightness across my chest - but then I have been up late and my injection is a couple of hours overdue - maybe my body is telling me something!
Wednesday, 8 August 2007
Day 81 (8th August '07) Jon's Hepatitis C Treatment
Two positive events this week!
The first was my monthly support group meeting - a very wide range of people, a mix of people taking treatment, considering treatment, and going for alternative treatment. Very positive and supportive. We agree not to discuss the meeting so all I can say is that I realise I am getting off lightly with the side effects so far. It also reminded me that because it is so easy to cut oneself I always carry plasters with me at all times now to patch myself up - I cut my finger in the centre of London the other week (it was a paper cut) and ended up being late for a meeting as I had to go and buy plasters . So now i alsways carry some with me,
The second was my three month visit to the hospital. My basic ALT level has dropped to 28 (normal range is under 40) from the 50s.
I had a PCR test to measure my viral load today too at the hospital and the results will be ready when I go back in five weeks time. Yes five weeks! It should be four. But I had to postpone my September meeting by one week. I hadn't realised the impact this had on the system - I had to get a prescription for the extra week's drugs which (serves me right) meant waiting for over half an hour while the pharmacy in the hospital made up the precsription. Funnily, I did not get irritable!!
My white blood count has dropped from 290 before treatment to 211 now. My haemoglobin level now is 11.6 (from 16.0 before I started treatment) and my platelets are 118 (from 242 before treatment). The nurse said if the haemoglobin count goes down to 8 or 9 I should expect to get really tired. I was also advised that people on 48 week treatment often get a low and feel wretched about 8 weeks before finishing treatment. Some side effects may get worse, but then the longer one takes treatment the better one adjusts one's coping strategies.
The first was my monthly support group meeting - a very wide range of people, a mix of people taking treatment, considering treatment, and going for alternative treatment. Very positive and supportive. We agree not to discuss the meeting so all I can say is that I realise I am getting off lightly with the side effects so far. It also reminded me that because it is so easy to cut oneself I always carry plasters with me at all times now to patch myself up - I cut my finger in the centre of London the other week (it was a paper cut) and ended up being late for a meeting as I had to go and buy plasters . So now i alsways carry some with me,
The second was my three month visit to the hospital. My basic ALT level has dropped to 28 (normal range is under 40) from the 50s.
I had a PCR test to measure my viral load today too at the hospital and the results will be ready when I go back in five weeks time. Yes five weeks! It should be four. But I had to postpone my September meeting by one week. I hadn't realised the impact this had on the system - I had to get a prescription for the extra week's drugs which (serves me right) meant waiting for over half an hour while the pharmacy in the hospital made up the precsription. Funnily, I did not get irritable!!
My white blood count has dropped from 290 before treatment to 211 now. My haemoglobin level now is 11.6 (from 16.0 before I started treatment) and my platelets are 118 (from 242 before treatment). The nurse said if the haemoglobin count goes down to 8 or 9 I should expect to get really tired. I was also advised that people on 48 week treatment often get a low and feel wretched about 8 weeks before finishing treatment. Some side effects may get worse, but then the longer one takes treatment the better one adjusts one's coping strategies.
Saturday, 4 August 2007
Day 77 (4th Aug 07) Jon's Hepatitis C Treatment
Had another uneventful weekly Interferon injection Thursday night - I couldn't remember which side of my stomach I'd used last time... I prefer injecting in my stomach than my thigh.
Had to have the plumber round on Thursday due to a leaking radiator. The good news was that the plumber came, but I found it stressful. I do find that anything out of the routine is getting more difficult to cope with.
I have to go and have a lie down for half an hour or so much more often. I also find it difficult mentally to cope with forward planning.
Otherwise the cough still there - usually when I think about it or when I move into a colder room, or if there is some sort of atmospheric change. But it is more under control, especially at work.
The irritation is still there, but I move away from situations much more.
I also have a craving for sweet things sometimes, so I always have hard boiled sweets in the car. My weight has stabilised to about 12 stone with clothes, but I am eating things I'd previously stopped eating - like milk, or sugar, or cakes. That's sort of an upside to the treatment - I can eat what I want with no worry about putting on weight! I am going to have to be very careful when I come off the treatment not to put on weight.
I also am thirsty much more - the best drink seems to be hot water.
Had to have the plumber round on Thursday due to a leaking radiator. The good news was that the plumber came, but I found it stressful. I do find that anything out of the routine is getting more difficult to cope with.
I have to go and have a lie down for half an hour or so much more often. I also find it difficult mentally to cope with forward planning.
Otherwise the cough still there - usually when I think about it or when I move into a colder room, or if there is some sort of atmospheric change. But it is more under control, especially at work.
The irritation is still there, but I move away from situations much more.
I also have a craving for sweet things sometimes, so I always have hard boiled sweets in the car. My weight has stabilised to about 12 stone with clothes, but I am eating things I'd previously stopped eating - like milk, or sugar, or cakes. That's sort of an upside to the treatment - I can eat what I want with no worry about putting on weight! I am going to have to be very careful when I come off the treatment not to put on weight.
I also am thirsty much more - the best drink seems to be hot water.
Thursday, 2 August 2007
Day 75 (2 August '07) Jon's Hepatitis C Treatment
Another short, holding posting - everything pretty the much as in the last two or three days.
The hospital sent my doctor a short note to say that my treatment was going fine with minor side effects (.. they don't always seem quite so monior at the time - but compared to others of course they are).
My key task for the rest of the week is to plan my paid-for work plan for the autumn - I have to plan more these days - firefighting is much more difficult than before the treatment.
Am looking forward to my next group session on Monday, and also (in an apprehensive way) to my tests to see how the viral load is doing.
The hospital sent my doctor a short note to say that my treatment was going fine with minor side effects (.. they don't always seem quite so monior at the time - but compared to others of course they are).
My key task for the rest of the week is to plan my paid-for work plan for the autumn - I have to plan more these days - firefighting is much more difficult than before the treatment.
Am looking forward to my next group session on Monday, and also (in an apprehensive way) to my tests to see how the viral load is doing.
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