Hi All,
Not a good week this week really. I've been playing around with drug doses and combinations (apparently two of the anti-emetics I was on are not recommended together, so I tried cutting each one out) and things were definitely worse for most of the week - lot's of uncomfortable nausea leading to lots of time in bed and simply not being able to eat enough food. I've lost quite a bit of weight which means that I am now just below my ideal weight for the first time since I was about 20! Trouble is, I'm losing it from my muscles, not my wasteline!
However, there seems to be some possible light ahead. The Palliative care team recommended a new drug regime which I've been on for two days now. Early indications are positive - I'm still suffering from nausea, but it seems less, particularly in the morning, and I do have the option of upping the dose of this new drug, so we'll see if things develop well.
The new regime means dropping all four of the anti-emetics I was on, and swapping my Lansoperazole ant-acid for the similar Omeprazole (which I was on right at the start of all this). This switch allows me to have two a day, one in the morning and one at night.
The main change is that I now have a once-a-day, nightly tablet called Haloperidol to manage the nausea.
Haloperidol is a multi-purpose drug, and is a bit scary because it's main use is in the treatment of Schizophrenia! Here's a few things that Wikipedia has to say about it:
Haloperidol is an older antipsychotic used in the treatment of schizophrenia and, more acutely, in the treatment of acute psychotic states and delirium
Haloperidol possesses a strong activity against delusions and hallucinations
The peripheral antidopaminergic effects of haloperidol account for its strong antiemetic activity. There, it acts at the chemoreceptor trigger zone (CTZ). Haloperidol is useful to treat severe forms of nausea/emesis such as those resulting from chemotherapy.
But most worryingly ...
The peripheral effects lead also to a relaxation of the gastric sphincter muscle and an increased release of the hormone prolactin, with the possible emergence of breast enlargement and secretion of milk (lactation) in both sexes.
So, the chance of growing Moobs - nice! Hopefully, the dose I am on is extremely low compared with that used to treat psychosis, so I may be able to avoid such side-effects!
I've got to stick on this dose for 5 days before we decide whether to up it slightly. I am finding that it doesn't last for the full 24 hours so far - it may get better once its had a chance to build up in the system, but I am definitely encouraged by the better mornings. I am really hoping for some good news here, because based on last week, I just couldn't see myself getting back to any semblance of normality, and that was really starting to get me down. However, I am glad to hear that there are still a few avenues left open even beyond this one, so here's hoping.
Thanks for all the comments about the band by the way - you can see/hear more at www.greatband.co.uk if you want. No more gigs for a while, but to be honest I'm glad. I need more time before I can get back to doing gigs regularly, so a quiet spell has come at the right moment!
Time to go and try and get some dinner down me, even though every possible food type reminds me of poison at the moment :(
Cheers
Col.
Sunday 26 April 2009
Sunday 19 April 2009
Sunday 19th April 2009
So, no real developments again this week - I've had a bit of all my symptoms as usual, interspersed with some good spells.
Another chat with the dietician hasn't really shed any more light, except for the fact that there are multiple layers of things which could be causing all the problems, so it makes life very difficult unravelling everything to find the best regime. She has referred me to the MacMillan Palliative Care team - not for any sinister reason, but just because they are the real experts in mitigating nausea etc for terminal patients, so they should be able to help me too - they have a wide range of anti-emetics they can prescribe and hopefully it is just a case of experimenting until I finally find ones which work.
I managed to do the gig on Friday, which was good fun, but harder work than even I expected. I had to sit down for a breather on more than one occasion, but overall I'm glad I did it - my lack of energy was the main issue on the night - I wasn't affected by nausea or diarrhoea luckily.
The event was a "goodbye" to Booth Hall Children's Hospital in Manchester, which is closing down and transferring to Manchester Royal Infirmary. 500 guests enjoying a meal and entertainment at the new Middleton Arena.
Because this was a full stage event with large PA and lighting system, we decided to video it so we could use some clips for our publicity. However, being a "local council" venue, the inevitable jobsworths told us we were not allowed due to "copyright reasons". I could understand why someone else wouldn't be allowed to video us, but stopping us videoing ourselves for our own use seems a bit ridiculous!
Martin went ahead and took some footage anyway of the first set before he was sussed and threatened with expulsion - if you want to see some clips you can see them here:
The New Originals video clips
Unfortunately these were taken early on in the first set before the show really got going (sober, hungry people don't dance!) which is a shame because the second set was much better, with a packed dancefloor, which always reflects positively on the band and gets our energy up too (for some reason I felt more exhausted during the first set than the second - you can see my emergency chair behind me!), so the clips aren't really representative, but they give you an idea of what we are about. Unfortunately it is difficult for friends to come and see us in most cases because the gigs are usually corporate events or weddings or other private do's, so this is about as close as I can get!
Spent most of Saturday in bed recovering, but I definitely feel a sense of achievement having got through it.
Mood has been further enhanced today with warm sunshine and a Spurs win over Newcastle (sorry Andy) to redress the balance after throwing away the return fixture earlier in the season as you may remember from my ranting!
Overall, I am still making grudging steps forward. If I could only get on top of the nausea properly, I could handle everything else, but it is this that is stopping me really moving forward. Hopefully the referral to the Palliative Care team will have the desired result.
In the mean time I have started committing to some work engagements and I'm hoping that this will get me mentally stimulated to help fight off any psychosomatic contributions to my illness - I'm worried that I might sometimes feel nauseous just because I expect to - it happens too often and at such erratic times that I know it is not all in the mind, but if there are any elements of me bringing it on myself, I want to dispel them as soon as possible, and I think the best way to do this is to get my mind and body as active as I can, even though this is quite hard when you have low energy levels.
Anyway, enough for now - I hope you are all able to enjoy the sunshine wherever you are!
Cheers,
Colin.
Another chat with the dietician hasn't really shed any more light, except for the fact that there are multiple layers of things which could be causing all the problems, so it makes life very difficult unravelling everything to find the best regime. She has referred me to the MacMillan Palliative Care team - not for any sinister reason, but just because they are the real experts in mitigating nausea etc for terminal patients, so they should be able to help me too - they have a wide range of anti-emetics they can prescribe and hopefully it is just a case of experimenting until I finally find ones which work.
I managed to do the gig on Friday, which was good fun, but harder work than even I expected. I had to sit down for a breather on more than one occasion, but overall I'm glad I did it - my lack of energy was the main issue on the night - I wasn't affected by nausea or diarrhoea luckily.
The event was a "goodbye" to Booth Hall Children's Hospital in Manchester, which is closing down and transferring to Manchester Royal Infirmary. 500 guests enjoying a meal and entertainment at the new Middleton Arena.
Because this was a full stage event with large PA and lighting system, we decided to video it so we could use some clips for our publicity. However, being a "local council" venue, the inevitable jobsworths told us we were not allowed due to "copyright reasons". I could understand why someone else wouldn't be allowed to video us, but stopping us videoing ourselves for our own use seems a bit ridiculous!
Martin went ahead and took some footage anyway of the first set before he was sussed and threatened with expulsion - if you want to see some clips you can see them here:
The New Originals video clips
Unfortunately these were taken early on in the first set before the show really got going (sober, hungry people don't dance!) which is a shame because the second set was much better, with a packed dancefloor, which always reflects positively on the band and gets our energy up too (for some reason I felt more exhausted during the first set than the second - you can see my emergency chair behind me!), so the clips aren't really representative, but they give you an idea of what we are about. Unfortunately it is difficult for friends to come and see us in most cases because the gigs are usually corporate events or weddings or other private do's, so this is about as close as I can get!
Spent most of Saturday in bed recovering, but I definitely feel a sense of achievement having got through it.
Mood has been further enhanced today with warm sunshine and a Spurs win over Newcastle (sorry Andy) to redress the balance after throwing away the return fixture earlier in the season as you may remember from my ranting!
Overall, I am still making grudging steps forward. If I could only get on top of the nausea properly, I could handle everything else, but it is this that is stopping me really moving forward. Hopefully the referral to the Palliative Care team will have the desired result.
In the mean time I have started committing to some work engagements and I'm hoping that this will get me mentally stimulated to help fight off any psychosomatic contributions to my illness - I'm worried that I might sometimes feel nauseous just because I expect to - it happens too often and at such erratic times that I know it is not all in the mind, but if there are any elements of me bringing it on myself, I want to dispel them as soon as possible, and I think the best way to do this is to get my mind and body as active as I can, even though this is quite hard when you have low energy levels.
Anyway, enough for now - I hope you are all able to enjoy the sunshine wherever you are!
Cheers,
Colin.
Sunday 12 April 2009
Sunday 12th April 2009
Ok, ok, I know it's April and not March really - just testing!
I had my GP appointment last Monday, and had no problems getting the repeat prescriptions, even for the Ondansetron. Actually, he even gave me another anti-emetic in addition to the others. Some of you may have heard of Stematil as it is often used for sea sickness.
I'm now on three anti-emetics three times a day, plus the Ondansetron for when I need it. Unfortunately, I am still suffering from fairly regular bouts of nausea and have had to resort to the Ondansetron on more than one occasion.
I had a long chat with the dietician, and she thought there may be a lactose-intolerance issue going on, as the milk-based supplements have been such a big cause of the problems. Since last week I have been trying the powder mixes with both lactose-free and soya milks. So far no real noticeable difference - I've still had both nausea and diarrhoea on a number of occasions which is a shame. It would have been nice if we could have pinpointed the root cause as this is still holding me back from full recovery at the moment.
Overall, it's been an up and down week. I've had a couple of days where I've spent quite a lot of time in bed because I've not felt so good, but I've also had quite a few good periods. I've managed to be quite productive with work on the odd occasion, and I have taken the step of committing to a speaking engagement in London in early June. This is a two day event, and ideally I will be able to do both days, but I do have the contingency of just going down and back in a day for my speaking slot, or even handing the slot over to Andy T if absolutely necessary. I'm really determined to make it though, and I'm focusing on this as a target.
I also have a gig with the band next Friday, which will be my most ambitious foray out of the house since the operation. It's quite local (North Manchester), so it shouldn't be too much of a strain. I will have to plan to take easily consumable food with me, plus all my myriad drugs to ensure all is ok. I'm actually very confident that I will be ok (the show must go on and all that jazz), but I want it not just to go ok, but be a really good evening. Again, I see this as a step forward, so I want it to go well so that I can see it as progress. Unfortunately I won't be using the new bass, as I play a 5-string with this band and the new one is a 4-string, so it will be a little while yet before it gets its live debut!
I'm starting to push myself just a little bit with some exercise. I'm not ready to go back to the gym just yet, but I want to start getting relatively active. Today has been a beautiful day here, so I've been outside pressure washing the decking. I did it in about 4 separate sessions so as not to take too much out of myself, and when I did finally complete it I had a long lie down on the sofa, but I have completed it and I feel ok which is another step forward.
My gym membership which I put on hold for three months re-activates at the end of this month, and hopefully by then I will feel up to going along and doing some basic walking on the treadmill, or even some light swimming or something like that. I don't think I look too emaciated at the moment (in fact I probably look more "normal" than I have for a while having dropped a lot of "drinking fat"), but I'm definitely conscious that my muscles have wasted a bit, so I do want to get back into some basic exercise as soon as possible.
Ross next door put me onto a Discovery channel series about a bloke building a car from scratch. He chose to build a Westfield, which is somewhat different from the car of my ambitions, but its a good series to watch to highlight some of the pitfalls of such a project. I'm still very keen to go ahead, although it will probably be a Winter project, so I'm probably looking at the start of next year as a practical time. This also gives me the required "cooling off" period during which I either firm up my resolve to take on the project, or come to my senses and go out and buy a Mondeo! Bets anyone?
Anyway, time to go - for some unknown reason I've got quite addicted to watching the golf on telly! I really can't stand golf as a sport, but every now and then it captures my attention on the telly. The opposite of cricket really, which I always enjoyed playing as a kid, but cannot bear watching either live or on telly (except from the front of a pub on a village green with a Sunday pint in my hand, but even then I'd rather just have the pint and forget about the cricket!)
Too-de-loo,
Colin.
I had my GP appointment last Monday, and had no problems getting the repeat prescriptions, even for the Ondansetron. Actually, he even gave me another anti-emetic in addition to the others. Some of you may have heard of Stematil as it is often used for sea sickness.
I'm now on three anti-emetics three times a day, plus the Ondansetron for when I need it. Unfortunately, I am still suffering from fairly regular bouts of nausea and have had to resort to the Ondansetron on more than one occasion.
I had a long chat with the dietician, and she thought there may be a lactose-intolerance issue going on, as the milk-based supplements have been such a big cause of the problems. Since last week I have been trying the powder mixes with both lactose-free and soya milks. So far no real noticeable difference - I've still had both nausea and diarrhoea on a number of occasions which is a shame. It would have been nice if we could have pinpointed the root cause as this is still holding me back from full recovery at the moment.
Overall, it's been an up and down week. I've had a couple of days where I've spent quite a lot of time in bed because I've not felt so good, but I've also had quite a few good periods. I've managed to be quite productive with work on the odd occasion, and I have taken the step of committing to a speaking engagement in London in early June. This is a two day event, and ideally I will be able to do both days, but I do have the contingency of just going down and back in a day for my speaking slot, or even handing the slot over to Andy T if absolutely necessary. I'm really determined to make it though, and I'm focusing on this as a target.
I also have a gig with the band next Friday, which will be my most ambitious foray out of the house since the operation. It's quite local (North Manchester), so it shouldn't be too much of a strain. I will have to plan to take easily consumable food with me, plus all my myriad drugs to ensure all is ok. I'm actually very confident that I will be ok (the show must go on and all that jazz), but I want it not just to go ok, but be a really good evening. Again, I see this as a step forward, so I want it to go well so that I can see it as progress. Unfortunately I won't be using the new bass, as I play a 5-string with this band and the new one is a 4-string, so it will be a little while yet before it gets its live debut!
I'm starting to push myself just a little bit with some exercise. I'm not ready to go back to the gym just yet, but I want to start getting relatively active. Today has been a beautiful day here, so I've been outside pressure washing the decking. I did it in about 4 separate sessions so as not to take too much out of myself, and when I did finally complete it I had a long lie down on the sofa, but I have completed it and I feel ok which is another step forward.
My gym membership which I put on hold for three months re-activates at the end of this month, and hopefully by then I will feel up to going along and doing some basic walking on the treadmill, or even some light swimming or something like that. I don't think I look too emaciated at the moment (in fact I probably look more "normal" than I have for a while having dropped a lot of "drinking fat"), but I'm definitely conscious that my muscles have wasted a bit, so I do want to get back into some basic exercise as soon as possible.
Ross next door put me onto a Discovery channel series about a bloke building a car from scratch. He chose to build a Westfield, which is somewhat different from the car of my ambitions, but its a good series to watch to highlight some of the pitfalls of such a project. I'm still very keen to go ahead, although it will probably be a Winter project, so I'm probably looking at the start of next year as a practical time. This also gives me the required "cooling off" period during which I either firm up my resolve to take on the project, or come to my senses and go out and buy a Mondeo! Bets anyone?
Anyway, time to go - for some unknown reason I've got quite addicted to watching the golf on telly! I really can't stand golf as a sport, but every now and then it captures my attention on the telly. The opposite of cricket really, which I always enjoyed playing as a kid, but cannot bear watching either live or on telly (except from the front of a pub on a village green with a Sunday pint in my hand, but even then I'd rather just have the pint and forget about the cricket!)
Too-de-loo,
Colin.
Sunday 5 April 2009
Sunday 5th March 2009
Hi All,
As promised, my first weekly roundup, and there's not a whole lot to report as expected.
I'm still struggling with the eating regime, but I think it is getting easier as I start to recognise what foods/portion sizes cause me the most issues.
Unfortunately the main culprit is still the supplement drinks, so I'm still not managing to get through as many of those as I am supposed to - I'm probably managing one every two days at the moment rather than two a day. The new samples the dietitian sent me definitely taste better than the originals, and at first I thought I was more tolerant of them, but it seems not. I definitely get nausea and diarrhoea almost every time.
I'm going to try making up only half of the powder mix ones at a time which may help me limit the intake at one particular go, but I will discuss the options with the dietitian tomorrow.
I also have a GP appointment tomorrow morning, to stock up on drugs. My usual doc is away for a couple of weeks, so I've got to convince a different doc that I need the expensive Ondansetron anti-nausea tab. Unfortunately I'm a little dubious about this particular doc ever since he diagnosed my trapped nerve as a sprained shoulder, even though I could wave my arm about as much as I wanted without the pain getting better or worse - it took him the best part of a month to eventually prescribe me a set of painkillers which actually worked. Hopefully he will just do what I ask this time and not expect me to go over the whole thing with him. We'll see.
My "build-a-car" plans certainly sparked some debate. No-one said "don't do it" which is good (unless you count Adrian, who pointed out my less than exemplary record with such things), but I will give it a while before I decide whether I really feel like taking on such a project. I might do the factory visit and let that convince me one way or another.
That's it for now - another update next week!
Cheers,
Colin.
As promised, my first weekly roundup, and there's not a whole lot to report as expected.
I'm still struggling with the eating regime, but I think it is getting easier as I start to recognise what foods/portion sizes cause me the most issues.
Unfortunately the main culprit is still the supplement drinks, so I'm still not managing to get through as many of those as I am supposed to - I'm probably managing one every two days at the moment rather than two a day. The new samples the dietitian sent me definitely taste better than the originals, and at first I thought I was more tolerant of them, but it seems not. I definitely get nausea and diarrhoea almost every time.
I'm going to try making up only half of the powder mix ones at a time which may help me limit the intake at one particular go, but I will discuss the options with the dietitian tomorrow.
I also have a GP appointment tomorrow morning, to stock up on drugs. My usual doc is away for a couple of weeks, so I've got to convince a different doc that I need the expensive Ondansetron anti-nausea tab. Unfortunately I'm a little dubious about this particular doc ever since he diagnosed my trapped nerve as a sprained shoulder, even though I could wave my arm about as much as I wanted without the pain getting better or worse - it took him the best part of a month to eventually prescribe me a set of painkillers which actually worked. Hopefully he will just do what I ask this time and not expect me to go over the whole thing with him. We'll see.
My "build-a-car" plans certainly sparked some debate. No-one said "don't do it" which is good (unless you count Adrian, who pointed out my less than exemplary record with such things), but I will give it a while before I decide whether I really feel like taking on such a project. I might do the factory visit and let that convince me one way or another.
That's it for now - another update next week!
Cheers,
Colin.
Wednesday 1 April 2009
Wednesday 1st April 2009
Happy April Fools!
Sorry, went for a lie down at about 9 o'clock last night and didn't wake up til this morning, so no blog yesterday!
On that note, I have come to a bit of a point in my story where there is little likely to happen for a while now. My next consultant meeting will not be for about 3 months, and in the meantime it is all about steady progress.
For this reason, I am planning to switch my blog posting to once a week (probably Sunday nights), which will hopefully allow any progress to come across in the weekly summary, without the monotony that continued daily posting would lead to. Of course if anything special happens I can always add an extra post, but I guess once a week should be enough.
Thank-you as usual for your continued support of the blog to-date, and I hope this slight "ramping-down" of the frequency won't leave you short of information!
Please keep posting the comments and sending emails/texts etc whenever you feel like it - I do appreciate it and enjoy the sentiments/debate/etc
Cheers,
Colin
Sorry, went for a lie down at about 9 o'clock last night and didn't wake up til this morning, so no blog yesterday!
On that note, I have come to a bit of a point in my story where there is little likely to happen for a while now. My next consultant meeting will not be for about 3 months, and in the meantime it is all about steady progress.
For this reason, I am planning to switch my blog posting to once a week (probably Sunday nights), which will hopefully allow any progress to come across in the weekly summary, without the monotony that continued daily posting would lead to. Of course if anything special happens I can always add an extra post, but I guess once a week should be enough.
Thank-you as usual for your continued support of the blog to-date, and I hope this slight "ramping-down" of the frequency won't leave you short of information!
Please keep posting the comments and sending emails/texts etc whenever you feel like it - I do appreciate it and enjoy the sentiments/debate/etc
Cheers,
Colin
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