Afternoon all!
Doesn't it make a difference when the weather is nice? I've had a couple of very good days in a row so far, and not too bad a week overall.
I have my CT scan tomorrow morning, which is good as I don't have a long time nil by mouth beforehand, just nothing after midnight which is ok. It's going to be interesting trying to drink a litre of pernod-flavoured stuff though - I'm not sure I can manage a litre within an hour these days - still, I guess I'll just drink what I can.
I've also got a referral to the palliative care team again once I've got the results. The problem at the moment is that they are treating me blind - they need the scan results to see if there is anything physical which might be causing the nausea - if so, it may mean that no amount of drugs can help, but there may be other courses of treatment. We'll see. The good news is that they are still trying different things to get on top of this.
The truth is, if everyday was like yesterday, I'd be absolutely fine - I ate well, no trace of nausea and I felt energetic enough to get out and about a bit and to spend some time cooking a big batch of indian dhal for the freezer (good source of protein!) Today has been pretty good so far, but I don't have quite as much energy - still no sickness so far which is my main measure of a good day.
Only a week and a half to go now until my planned work trip to London. I'm still very nervous, as I haven't made the progress I've expected to since accepting the engagement, but I'm still determined to go through with it anyway as it stands at the moment. Hopefully I haven't bitten off more than I can chew - after all, my committment is only to one 30 minute presentation on mainstage and two other 30 minute presentations in side rooms over two whole days, so if I can't manage that I think I am in trouble. I should be helping to man an exhibition stand in the gaps, but I know I have cover for that if it gets too much, so I think I'll be ok. I'll go down on the train which means I can sleep and have a supply of food available if I need it, and if the worst comes to the worst, I'll just have to slope off to be sick when I need to - people catching me in the toilets at the event will just think I'm nervous!! :) Main problem is my short term memory loss that I've been going through (someone told me it might still be the after effects of the anaesthetic) - will I remember my presentation or will I dry up on stage? The show must go on ... I'll be fine .... I'm sure I will!
Anyway, enough rambling for now, see you next week!
C
Sunday, 31 May 2009
Sunday, 24 May 2009
Sunday 24th May 2009
Hi All,
A little bit of a development this week - I got a last minute appointment to go in for another endoscopy (tube down the throat) on Thursday with my surgeon.
I opted for the sedation again as it makes life much easier, and the procedure was fine - the main problem as always is the not eating for hours beforehand.
The result of the test was that the surgical join near the neck is absolutely fine, and the stomach appears to be fine too. He used the balloon on the end of the scope to stretch the lower sphincter a little (where the stomach empties into the intestine), as the nerves that used to control that were cut as part of the surgery. I didn't feel that at all, so not as bad as it sounds.
He couldn't see any other reason for the nausea, so he's booking me in for another CT scan in the next week or so to see if anything shows up on that.
The upshot of the test and the stretch appears to be no real change, although I have only had one actual sick episode since then. It seems that the stomach may now be emptying quicker which reduces the actual sickness (but not the nausea unfortunately) and appears to have re-introduced the diarrhoea instead. This may be to do with the fact that I have changed my Loperamide dose (anti-diarrhoea) to one every two days from one every day, but I can't say which has caused it. Not too bad though, I've not gone back to the bad-old-days.
Unfortunately, there is no improvement in the nausea itself, it is just not leading to physical sickness at the moment. I had an awful day yesterday and spent 90% of the day sick in bed, but today has so far been good - just the usual nagging, underlying nausea, but not enough to really affect me.
I'm still keeping pretty positive, although yesterday was a down day. It's getting tough though as I'm still seeing no overall improvement and its starting to worry me that I am losing weight and seemingly unable to consume enough to stop it due to the nausea. I have some concerns about whether they are ever going to be able to stop this nausea and if they can't, what the future holds. Still, we take each day as it comes, and no-one has given up on me yet, so I'm not about to give up on myself.
On a lighter note, a good day of sport today (unless you are a Newcastle fan - sorry Andy) - a great chance to compare Formula 1 (great Monaco grand prix) with the US equivalent (dull Indy 500). I just don't get the US versions of motorsport. 200 laps of an oval, just waiting for someone to crash to break the boredom! Somewhat pointless in my view, but I guess it amuses some people!
Spurs finish the season 8th - unfortunately not the critical 7th with the benefit of a European place - just one of those games we threw away would have been enough :( - but amazing considering we were bottom of the league back in January, so not a bad season overall.
Nothing else to report, so hopefully some news about the CT scan to come next week.
Cheers!
A little bit of a development this week - I got a last minute appointment to go in for another endoscopy (tube down the throat) on Thursday with my surgeon.
I opted for the sedation again as it makes life much easier, and the procedure was fine - the main problem as always is the not eating for hours beforehand.
The result of the test was that the surgical join near the neck is absolutely fine, and the stomach appears to be fine too. He used the balloon on the end of the scope to stretch the lower sphincter a little (where the stomach empties into the intestine), as the nerves that used to control that were cut as part of the surgery. I didn't feel that at all, so not as bad as it sounds.
He couldn't see any other reason for the nausea, so he's booking me in for another CT scan in the next week or so to see if anything shows up on that.
The upshot of the test and the stretch appears to be no real change, although I have only had one actual sick episode since then. It seems that the stomach may now be emptying quicker which reduces the actual sickness (but not the nausea unfortunately) and appears to have re-introduced the diarrhoea instead. This may be to do with the fact that I have changed my Loperamide dose (anti-diarrhoea) to one every two days from one every day, but I can't say which has caused it. Not too bad though, I've not gone back to the bad-old-days.
Unfortunately, there is no improvement in the nausea itself, it is just not leading to physical sickness at the moment. I had an awful day yesterday and spent 90% of the day sick in bed, but today has so far been good - just the usual nagging, underlying nausea, but not enough to really affect me.
I'm still keeping pretty positive, although yesterday was a down day. It's getting tough though as I'm still seeing no overall improvement and its starting to worry me that I am losing weight and seemingly unable to consume enough to stop it due to the nausea. I have some concerns about whether they are ever going to be able to stop this nausea and if they can't, what the future holds. Still, we take each day as it comes, and no-one has given up on me yet, so I'm not about to give up on myself.
On a lighter note, a good day of sport today (unless you are a Newcastle fan - sorry Andy) - a great chance to compare Formula 1 (great Monaco grand prix) with the US equivalent (dull Indy 500). I just don't get the US versions of motorsport. 200 laps of an oval, just waiting for someone to crash to break the boredom! Somewhat pointless in my view, but I guess it amuses some people!
Spurs finish the season 8th - unfortunately not the critical 7th with the benefit of a European place - just one of those games we threw away would have been enough :( - but amazing considering we were bottom of the league back in January, so not a bad season overall.
Nothing else to report, so hopefully some news about the CT scan to come next week.
Cheers!
Sunday, 17 May 2009
Sunday 17th May 2009
Hi Folks,
Still a fairly similar story this week, although the bouts of nausea are manageable. I've been fine today, but yesterday I tried a small amount of one of my supplement drinks in the morning, and I ended up feeling sick most of the day. Once I've triggered it, it's hard to get back in balance again.
As I say, today has been good though. I had a couple of folks here for another music session, and now I'm absolutely knackered, but that I can handle much better than sickness!
Thanks Barb for the tip on ginger - I've actually been drinking ginger beer for some time now, and other ginger-related products (!) and I think they do sometimes help, but generally I find the only cure is to go to bed for a while. Unfortunately, that usually results in me not eating for too long and ending up with a combination of hunger and sickness - needing to eat, but not wanting to!
I've now got my surgeons appointment booked for the 24th June. Further out than I wanted, but I couldn't make the original appointment, so we'll have to make do. I'm not quite sure what will come of it anyway, but it's a date to work towards nonetheless.
Watched a video of the old band on tour last night - the long-lost and recently resurfaced "Jazzumentary" as it was affectionately titled. I think it was from the late 90's when we supported the Australian Doors Show on one of their national tours. We all had lithe bodies and too much hair in those days! Still, a great reminder of great times - the classic "back of a transit van on the M1" tour, trying desperately to get drunk on the 3.0% proof Heineken that we were given each night (we did manage quite well on some nights, to which the video is testament!) - especially mirthful was the night at a friend's flat in Liverpool after the Royal Court gig, where we watch Helen the drummer drink a pint of wine down in one (after much encouragement from the rest of us of course), then as expected, rapidly deteriorate to one stage beyond comatose, but with hilarious interludes on her way down! Ha ha - too funny!
Time for a last bite to eat, then an early night to recover methinks!
Bye.
Still a fairly similar story this week, although the bouts of nausea are manageable. I've been fine today, but yesterday I tried a small amount of one of my supplement drinks in the morning, and I ended up feeling sick most of the day. Once I've triggered it, it's hard to get back in balance again.
As I say, today has been good though. I had a couple of folks here for another music session, and now I'm absolutely knackered, but that I can handle much better than sickness!
Thanks Barb for the tip on ginger - I've actually been drinking ginger beer for some time now, and other ginger-related products (!) and I think they do sometimes help, but generally I find the only cure is to go to bed for a while. Unfortunately, that usually results in me not eating for too long and ending up with a combination of hunger and sickness - needing to eat, but not wanting to!
I've now got my surgeons appointment booked for the 24th June. Further out than I wanted, but I couldn't make the original appointment, so we'll have to make do. I'm not quite sure what will come of it anyway, but it's a date to work towards nonetheless.
Watched a video of the old band on tour last night - the long-lost and recently resurfaced "Jazzumentary" as it was affectionately titled. I think it was from the late 90's when we supported the Australian Doors Show on one of their national tours. We all had lithe bodies and too much hair in those days! Still, a great reminder of great times - the classic "back of a transit van on the M1" tour, trying desperately to get drunk on the 3.0% proof Heineken that we were given each night (we did manage quite well on some nights, to which the video is testament!) - especially mirthful was the night at a friend's flat in Liverpool after the Royal Court gig, where we watch Helen the drummer drink a pint of wine down in one (after much encouragement from the rest of us of course), then as expected, rapidly deteriorate to one stage beyond comatose, but with hilarious interludes on her way down! Ha ha - too funny!
Time for a last bite to eat, then an early night to recover methinks!
Bye.
Sunday, 10 May 2009
Sunday 10th May 2009
Really struggling for what to write today.
The week started badly, but I had my best day for ages yesterday so I thought things might be on the up. Most of today has been good too, but I've just had a relapse and I'm sick again.
Drug regime changed again on Tuesday - I've added the Cyclazine back into the mix, three times a day on the order of my care team, but it doesn't seem to be making any difference.
I'm waiting on my appointment with the surgeon, which should be early June, and it's possible I'll have some kind of tests - maybe a swallow test, to see if there is anything physical causing this. From that I can infer that this is going on longer than even the team expect.
Its a shame. If every day was like yesterday, I'd be well on my way to full recovery, but with the spectre of being sick hanging over you every time you eat something, it pretty much limits what you can do in life.
Things have actually taken a turn for the worse in that it is not just the feeling of nausea anymore, I am actually being sick. Luckily, due to the change in plumbing inside of me, not much comes up and it is mostly a lot of unpleasant noise (if I was throwing up all the food, I'd be seriously worried - I'm eating little enough as it is). This is definitely worse than when I came out of hospital.
I was really looking forward to being able to be a bit more positive and jovial today, but it seems that this is set to drag on and on.
Let's hope for some respite this week.
Now I have to go and lie down I'm afraid.
See ya.
Colin
The week started badly, but I had my best day for ages yesterday so I thought things might be on the up. Most of today has been good too, but I've just had a relapse and I'm sick again.
Drug regime changed again on Tuesday - I've added the Cyclazine back into the mix, three times a day on the order of my care team, but it doesn't seem to be making any difference.
I'm waiting on my appointment with the surgeon, which should be early June, and it's possible I'll have some kind of tests - maybe a swallow test, to see if there is anything physical causing this. From that I can infer that this is going on longer than even the team expect.
Its a shame. If every day was like yesterday, I'd be well on my way to full recovery, but with the spectre of being sick hanging over you every time you eat something, it pretty much limits what you can do in life.
Things have actually taken a turn for the worse in that it is not just the feeling of nausea anymore, I am actually being sick. Luckily, due to the change in plumbing inside of me, not much comes up and it is mostly a lot of unpleasant noise (if I was throwing up all the food, I'd be seriously worried - I'm eating little enough as it is). This is definitely worse than when I came out of hospital.
I was really looking forward to being able to be a bit more positive and jovial today, but it seems that this is set to drag on and on.
Let's hope for some respite this week.
Now I have to go and lie down I'm afraid.
See ya.
Colin
Sunday, 3 May 2009
Sunday 3rd May 2009
Hi All,
Mixed week this week.
I had and still have high-hopes for the new drug regime. It certainly helped me in the first part of the week with definitely reduced nausea.
On Wednesday, I was recommended to double the dose to try and get rid of the last traces of sickness, but when I did this I fell foul of one of the main side-effects (no, no boobs yet!). The drug has a sedative effect which wasn't affecting me when I was on the 1.5mg dose, but when I upped to 3mg I found that it made me really groggy in the mornings and unable to get out of bed. It also didn't seem to improve the nausea symptoms any more.
I have since reverted to the lower dose, but yesterday and today I felt a bit pants most of the time. Last night I had a bad dose of diarrhoea for the first time in ages, and all day today I've been on the verge of nausea.
Unfortunately, now I only have the one drug, if I have something to eat or drink which sets me off, I've got nothing extra I can take to help me, which is putting me off my supplement drinks even more as they tend to trigger the nausea.
So all in all a mixed bag this week. Hopefully things will settle down again now I've lowered the dose. I might try somewhere in between like 2mg to see if that helps, but its just yet more experimentation.
I was told that it would take months and maybe up to a year before I got used to my diet etc, and I'm now starting to understand what they meant :(
On the better news front, I have the results from the specialist histology that was performed on my surgery sample by an endocrine tumour specialist. The good news is that she agreed completely with the original findings, so there are no more surprises. They will discuss my case on the 20th May at a specialist meeting, but the expectation is that everything will stay the same going forward. Nothing new to get stuck into, but nothing untoward either.
So everything generally ok, but still the problems with nausea, tiredness, and weightloss to contend with, which is going on far too long for my liking. Hopefully some better news next week when the drugs settle down.
Cheers,
Colin.
Mixed week this week.
I had and still have high-hopes for the new drug regime. It certainly helped me in the first part of the week with definitely reduced nausea.
On Wednesday, I was recommended to double the dose to try and get rid of the last traces of sickness, but when I did this I fell foul of one of the main side-effects (no, no boobs yet!). The drug has a sedative effect which wasn't affecting me when I was on the 1.5mg dose, but when I upped to 3mg I found that it made me really groggy in the mornings and unable to get out of bed. It also didn't seem to improve the nausea symptoms any more.
I have since reverted to the lower dose, but yesterday and today I felt a bit pants most of the time. Last night I had a bad dose of diarrhoea for the first time in ages, and all day today I've been on the verge of nausea.
Unfortunately, now I only have the one drug, if I have something to eat or drink which sets me off, I've got nothing extra I can take to help me, which is putting me off my supplement drinks even more as they tend to trigger the nausea.
So all in all a mixed bag this week. Hopefully things will settle down again now I've lowered the dose. I might try somewhere in between like 2mg to see if that helps, but its just yet more experimentation.
I was told that it would take months and maybe up to a year before I got used to my diet etc, and I'm now starting to understand what they meant :(
On the better news front, I have the results from the specialist histology that was performed on my surgery sample by an endocrine tumour specialist. The good news is that she agreed completely with the original findings, so there are no more surprises. They will discuss my case on the 20th May at a specialist meeting, but the expectation is that everything will stay the same going forward. Nothing new to get stuck into, but nothing untoward either.
So everything generally ok, but still the problems with nausea, tiredness, and weightloss to contend with, which is going on far too long for my liking. Hopefully some better news next week when the drugs settle down.
Cheers,
Colin.
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