Chemo Cycle 3 Day 13
Coming to the end of the second week of this cycle, and everything is pretty much as usual to be honest.
Although I am having a maintenance dose of the steroids to keep me going, I've still had the midweek slump that I've had in previous cycles. I've been really short of energy - even moreso than usual - and I've been feeling a bit down. Not depressed or anything serious, just lethargic and not motivated by anything at all really. I'm expecting to start to move out of this phase over the next few days though, which will be nice.
Good news is that I've not had any nausea. The last time I had any symptoms was the "gap" week I had between this cycle and the last, so it really does seem as though the chemo drugs prevent nausea rather than causing it which is strange.
Main problem over the last week has been diarrhoea though. Things had calmed down very well and were almost back to normal a week or so ago - I'd even pretty much stopped taking the Loperimide (immodium) drug that I've been taking on and off since the surgery.
However, things have got out of balance again and I've had a lot of stomach cramps and quite a few bouts to deal with - sometimes in the middle of the night which is no fun and ruins the rest I need from my sleep. I can counter it by taking more Loperimide, but its a fine balancing act between dealing with diarrhoea and dealing with being bunged up for days as the alternative - neither is good. Unfortunately this is now part of my life. The surgery necessarily cut a nerve (the Vagus nerve I think) which regulates the process in a normal person, so I'll never be the same again, but its just a case of trying to get the balance as good as possible.
Unfortunately the side effects are a loss of fluids which I can do without, and even more drain on my energy, so I've had a couple of real washout days over the last week.
It's going to be interesting to see how I feel once the fourth chemo cycle is finished. My oncologist expected me to have a surge in energy in my extra rest week after the last cycle and was surprised to hear that I noticed no difference. I hope given a few weeks that I can get some more energy back, but I'm not sure its to do with the chemo at all, more the lack of nutrition from the food I am able to consume which isn't likely to change much going forward. Still we'll see. I have some plans for October/November, so I'm hoping I will have more energy than I have now, not less.
Anyway, that's a lot of words for very little to say, so I'll sign off for now. Hopefully a little more lively next week as we go into recovery week!
Cheers,
C.
Sunday, 30 August 2009
Tuesday, 25 August 2009
Tuesday 25th August 2009
Hi All,
Just a quick one to say that I've had no recurrence of my eye distortion since Sunday which is good.
I got quite a few texts etc from people likening the symptoms to the onset of a migraine. I've never suffered from migraines thankfully, and I hope it is not going to start now!
Although I have been told that it is unlikely that this was connected to my chemo drugs at all, it seems there is a possible link between the Taxol drug and a slowing of the heart rate. This heart rate slowing can have an effect on vision apparently, and I had been lying on the sofa relaxing at the time, so that may have contributed.
Still - seems it is nothing to worry about anyway, so hopefully just a one-off.
Otherwise, leg pains are clearing up as usual, and no other issues to report, so on we go! :)
Cheers,
C.
Just a quick one to say that I've had no recurrence of my eye distortion since Sunday which is good.
I got quite a few texts etc from people likening the symptoms to the onset of a migraine. I've never suffered from migraines thankfully, and I hope it is not going to start now!
Although I have been told that it is unlikely that this was connected to my chemo drugs at all, it seems there is a possible link between the Taxol drug and a slowing of the heart rate. This heart rate slowing can have an effect on vision apparently, and I had been lying on the sofa relaxing at the time, so that may have contributed.
Still - seems it is nothing to worry about anyway, so hopefully just a one-off.
Otherwise, leg pains are clearing up as usual, and no other issues to report, so on we go! :)
Cheers,
C.
Sunday, 23 August 2009
Sunday 23rd August 2009
Something very odd is going on at the moment. Over the last hour or so, my peripheral vision has started to be affected. I've got a kind of swirling going on to the left of my vision, and a general distortion overall. Not something I've ever experienced before.
I'm hoping that it will pass - it's annoying, but not affecting my balance or anything like that so far.
I'm going to go and have a sleep and see if that helps, but it's most bizarre!
Otherwise, just the usual from this chemo cycle - I'm getting the aching legs although not too badly. The painkillers I have help that, although they may be what's contributing to the eye distortion - they do cause me to feel a bit woozy (although the last one I had was last night, so it would be odd). Come to think of it though, I have reported woozy spells in the first week of the cycles before if I remember, so I guess that this is just an extension of that - and now I am sitting up in a darkened room doing the blog it does seem to be clearing up a little.
How odd!
Anyway - a good day for Spurs again today with a third win out of three, so I'm in a good mood. It seems that England also won something at some other much more dull sport. I suppose we're going to have to endure days of celebrations now - mainly everybody celebrating that this boring series of timewasting is finally over! :)
Not much else to report this week - moving into my risk week next week, so I'll be back in hibernation mode for a while. Still, its raining again here, so I don't think I'll be missing too much nice weather!
See you later!
Colin.
I'm hoping that it will pass - it's annoying, but not affecting my balance or anything like that so far.
I'm going to go and have a sleep and see if that helps, but it's most bizarre!
Otherwise, just the usual from this chemo cycle - I'm getting the aching legs although not too badly. The painkillers I have help that, although they may be what's contributing to the eye distortion - they do cause me to feel a bit woozy (although the last one I had was last night, so it would be odd). Come to think of it though, I have reported woozy spells in the first week of the cycles before if I remember, so I guess that this is just an extension of that - and now I am sitting up in a darkened room doing the blog it does seem to be clearing up a little.
How odd!
Anyway - a good day for Spurs again today with a third win out of three, so I'm in a good mood. It seems that England also won something at some other much more dull sport. I suppose we're going to have to endure days of celebrations now - mainly everybody celebrating that this boring series of timewasting is finally over! :)
Not much else to report this week - moving into my risk week next week, so I'll be back in hibernation mode for a while. Still, its raining again here, so I don't think I'll be missing too much nice weather!
See you later!
Colin.
Wednesday, 19 August 2009
Wednesday 19th August 2009
Sorry, couldn't resist a quick gloat. I know it won't last, so I have to make the best of it! Come on you Spurs - TOP OF THE LEAGUE!! :)
Tuesday, 18 August 2009
Tuesday 18th August 2009 - Part 2
Sorry, just to add my thanks for all the good wishes I've had over the last couple of days. I'm sure all your positive energy helped swing the results!
Thank-you!!
Thank-you!!
Tuesday 18th August 2009
Chemo Cycle 3 Day 1
As you can see from the above, I've had some good news! The chemo has shown signs of success, and this means that I am going on to have two further cycles of treatment.
The CT scan has shown that the lung tumours have all shrunk a certain amount, as has one on the chest (which I didn't know about).
As usual, there is a mixed story though - in the liver, some tumours have shrunk, some have died completely it seems, but there is some evidence of some new tumours as well.
Overall good news and my oncologist is happy. For me, it is just good that I am having the further treatment and I hope this goes equally as well.
The big question is still what happens after I finish the last cycle. Sometimes the chemo keeps the cancer at bay for a while - the timeframe is variable - and sometimes the cancer just starts to grow back. With my cancer being so rare and having shown signs of being so aggressive, my oncologist just doesn't know the answer to this question so it will be another "wait and see". However, it is good that I am still on "active" treatment at the moment, and now that the tumours have responded, there may be more options going forward. That said, we just don't know, but one step at a time and this is a good step for a change!
Absolutely exhausted at the moment after a long day at the ozzy, so I'm going to have a lie down, but generally a good day today!
Cheers,
C.
As you can see from the above, I've had some good news! The chemo has shown signs of success, and this means that I am going on to have two further cycles of treatment.
The CT scan has shown that the lung tumours have all shrunk a certain amount, as has one on the chest (which I didn't know about).
As usual, there is a mixed story though - in the liver, some tumours have shrunk, some have died completely it seems, but there is some evidence of some new tumours as well.
Overall good news and my oncologist is happy. For me, it is just good that I am having the further treatment and I hope this goes equally as well.
The big question is still what happens after I finish the last cycle. Sometimes the chemo keeps the cancer at bay for a while - the timeframe is variable - and sometimes the cancer just starts to grow back. With my cancer being so rare and having shown signs of being so aggressive, my oncologist just doesn't know the answer to this question so it will be another "wait and see". However, it is good that I am still on "active" treatment at the moment, and now that the tumours have responded, there may be more options going forward. That said, we just don't know, but one step at a time and this is a good step for a change!
Absolutely exhausted at the moment after a long day at the ozzy, so I'm going to have a lie down, but generally a good day today!
Cheers,
C.
Saturday, 15 August 2009
Saturday 15th August 2009
Still nothing to report on the illness front - all going well if a little short on energy as usual.
Just had a nice day out at the Keighley & Worth Valley Railway - old steam railway running through Howarth (home of the Bronte sisters) - with Rich and family and Andy C who I haven't seen for about three years so that was nice!
This may be the locomotive used in a recent hair product commercial - "don't break up with your hair" - I'm sure that was number 80002. Don't ask me how I remember that!
Oooh - could be the Railway Children all over again. Bring on Jenny Agutter! Actually, the Railway Children (or the "Railroad Children" as American Linda recently referred to it apparently :) was filmed on this line.
In other news, I am both proud and somewhat gutted to hear of yet another drummer I have been in a band with going on to bigger and [possibly] better things. First there was my first band after moving to Manchester - "The Elysian Fields" - drummer, one Andy Treacey, who has graduated from damp, smelly North Manchester reheasal rooms (anyone remember "Red House"?) and now plays full time for Faithless, whilst filling the gaps with the likes of Robbie Williams, Dido and Bono!
Now I have been contacted by my old friend Chris from 25 years ago who found me on Google and tells me that the drummer from my first ever band "Shotgun Wedding", Ivan Gazidis, is now CEO of Arsenal FC! What a bloody insult - of all the teams to pick, he has to go to Arsenal! (spit). Amazing to see his photo on the net though - he looks somewhat different from the days of playing at Sale Youth Club!
Chris, for your amusement, here is a pic of the '67 Fender Telecaster (on the left) you bought from me for £250 which I guess is worth a few grand now!
Finally, I've moved into the 21st century and got a webcam and a Skype account, so anyone who fancies a video chat drop me a line and we can set one up!
Cheers,
C.
p.s. Dave, sorry I didn't wish you speedy recovery from your Pig Sickness, but I didn't know you had it! Hope you had a good time in Ko Samui!
Just had a nice day out at the Keighley & Worth Valley Railway - old steam railway running through Howarth (home of the Bronte sisters) - with Rich and family and Andy C who I haven't seen for about three years so that was nice!
This may be the locomotive used in a recent hair product commercial - "don't break up with your hair" - I'm sure that was number 80002. Don't ask me how I remember that!
Oooh - could be the Railway Children all over again. Bring on Jenny Agutter! Actually, the Railway Children (or the "Railroad Children" as American Linda recently referred to it apparently :) was filmed on this line.
In other news, I am both proud and somewhat gutted to hear of yet another drummer I have been in a band with going on to bigger and [possibly] better things. First there was my first band after moving to Manchester - "The Elysian Fields" - drummer, one Andy Treacey, who has graduated from damp, smelly North Manchester reheasal rooms (anyone remember "Red House"?) and now plays full time for Faithless, whilst filling the gaps with the likes of Robbie Williams, Dido and Bono!
Now I have been contacted by my old friend Chris from 25 years ago who found me on Google and tells me that the drummer from my first ever band "Shotgun Wedding", Ivan Gazidis, is now CEO of Arsenal FC! What a bloody insult - of all the teams to pick, he has to go to Arsenal! (spit). Amazing to see his photo on the net though - he looks somewhat different from the days of playing at Sale Youth Club!
Chris, for your amusement, here is a pic of the '67 Fender Telecaster (on the left) you bought from me for £250 which I guess is worth a few grand now!
Finally, I've moved into the 21st century and got a webcam and a Skype account, so anyone who fancies a video chat drop me a line and we can set one up!
Cheers,
C.
p.s. Dave, sorry I didn't wish you speedy recovery from your Pig Sickness, but I didn't know you had it! Hope you had a good time in Ko Samui!
Tuesday, 11 August 2009
Tuesday 11th August 2009
Yo Stig! Good to hear from you - I didn't realise you were a Blog-reader.
I'm gutted to be missing the annual Oslo Shrimpfest - for the rest of the readers this is an annual event organised by the Norwegian user community for our software. An outing in the Oslo Fjord on a lovely old boat complete with a vat of super-fresh Norwegian prawns and several gallons of beer:
After the trip, there is the traditional visit to a land-based pub for Irish Car-bombs - a dodgily named Guiness cocktail which everyone should try. Here's how ...
3/4 pint of Guinness in a pint glass. 1/2 shot of Baileys and 1/2 shot Jamiesons in a shot glass. Drop the shot glass into the Guinness and drink down in one (otherwise it curdles). Sounds horrible, but it tastes really nice, and "does the trick" if you know what I mean. Unfortunately my days of drinking a pint in one are long gone, but I can still evangelise! :)
Here you can see the ICB's lined up on the bar, hosted by a Norwegian barman who looks uncannily like Keith from Eastenders (not that I would ever admit to having watched Eastenders of course!)
Anyway, enough about Norway for a minute (although I do love the place!)
Had a really good day yesterday - it was great to see Rich and family who I haven't seen since Rich moved to San Francisco 15 years ago - nice to catch up on old times. I posted on Facebook that I'd had a good day and was really surprised to receive so many positive comments in return - very kind, but also indicative of how much time my friends spend on Facebook when they SHOULD BE WORKING! Ha ha! :)
Best wishes to Ringo who I hear has Swine Flu. Get well soon mate, and KEEP THE HELL AWAY FROM ME!
Seriously, I'm quite worried about Swine Flu - it would be really bad if I got it (potentially life threatening) and we are about to move into autumn when predictions are that it will spread more virulently. There is talk of a vaccine, possibly due in September, and cancer patients will be among the first to get it, but there is likely to be quite a long period before it becomes available when I (and others in my position) will be at risk. An irritating extra complication I could do without!
Disappointed to hear that Michael Schumacher has pulled out of a return to Formula 1 - I was really looking forward to that, but never mind.
As you can see, I've not really got any news today - still ok, although a little "mentally" tired today. Not sure why, but finding it difficult to concentrate on anything. Hopefully better tomorrow.
Will stop there for today. See you soon!
Cheers,
Col x
I'm gutted to be missing the annual Oslo Shrimpfest - for the rest of the readers this is an annual event organised by the Norwegian user community for our software. An outing in the Oslo Fjord on a lovely old boat complete with a vat of super-fresh Norwegian prawns and several gallons of beer:
After the trip, there is the traditional visit to a land-based pub for Irish Car-bombs - a dodgily named Guiness cocktail which everyone should try. Here's how ...
3/4 pint of Guinness in a pint glass. 1/2 shot of Baileys and 1/2 shot Jamiesons in a shot glass. Drop the shot glass into the Guinness and drink down in one (otherwise it curdles). Sounds horrible, but it tastes really nice, and "does the trick" if you know what I mean. Unfortunately my days of drinking a pint in one are long gone, but I can still evangelise! :)
Here you can see the ICB's lined up on the bar, hosted by a Norwegian barman who looks uncannily like Keith from Eastenders (not that I would ever admit to having watched Eastenders of course!)
Anyway, enough about Norway for a minute (although I do love the place!)
Had a really good day yesterday - it was great to see Rich and family who I haven't seen since Rich moved to San Francisco 15 years ago - nice to catch up on old times. I posted on Facebook that I'd had a good day and was really surprised to receive so many positive comments in return - very kind, but also indicative of how much time my friends spend on Facebook when they SHOULD BE WORKING! Ha ha! :)
Best wishes to Ringo who I hear has Swine Flu. Get well soon mate, and KEEP THE HELL AWAY FROM ME!
Seriously, I'm quite worried about Swine Flu - it would be really bad if I got it (potentially life threatening) and we are about to move into autumn when predictions are that it will spread more virulently. There is talk of a vaccine, possibly due in September, and cancer patients will be among the first to get it, but there is likely to be quite a long period before it becomes available when I (and others in my position) will be at risk. An irritating extra complication I could do without!
Disappointed to hear that Michael Schumacher has pulled out of a return to Formula 1 - I was really looking forward to that, but never mind.
As you can see, I've not really got any news today - still ok, although a little "mentally" tired today. Not sure why, but finding it difficult to concentrate on anything. Hopefully better tomorrow.
Will stop there for today. See you soon!
Cheers,
Col x
Saturday, 8 August 2009
Saturday 8th August 2009
Chemo Cycle 2 Day 20
Sorry again for the lack of posts - I was convinced I did one on Wednesday but it seems not!
Much better week this one than last - I've had loads more energy (on a relative scale of course), so I've been out and about a bit more and seen a few people which has been nice.
I had my scan yesterday which went the same as usual - an hour of drinking pernod-flavoured water then the warm flush from the injection, then in and out of the doughnut a couple of times, then "off you go"! The only difference is that the chemo seems to have thinned my blood a bit this time so I made a bit of a mess when the put the needle in - lots of squirting of blood. Nice! :)
No hint as to the results, so I have to wait until a week on Tuesday (the 18th) as expected. No worries. I won't think about it until then, but I do hope for some good news for a change!
Been out to a barbeque today, where I met the Stig from Top Gear. Seriously! I obviously can't tell you anything as I am sworn to top secrecy, suffice to say that it is not Michael Schumacher! Nice bloke though, and not what I would have expected. I should have asked him if he has an "I am the Stig" T-shirt - that would be funny. And by the way, no I can't get any tickets for Top Gear ...
I actually know someone in Norway called Stig. Cool name!
Good to see the footie season starting again after such a long break (not). Premier league starts next week so we'll see if Peter Crouch can make a difference for Spurs this season. Hopefully no more relegation scares this year!
Rest week this week as my oncologist is on vacation, but I'll hopefully post once or twice to show that I'm still here!
Anyway, enough babble for now - have a good rest of the weekend and a pleasant week to come,
Cheers,
Col.
Sorry again for the lack of posts - I was convinced I did one on Wednesday but it seems not!
Much better week this one than last - I've had loads more energy (on a relative scale of course), so I've been out and about a bit more and seen a few people which has been nice.
I had my scan yesterday which went the same as usual - an hour of drinking pernod-flavoured water then the warm flush from the injection, then in and out of the doughnut a couple of times, then "off you go"! The only difference is that the chemo seems to have thinned my blood a bit this time so I made a bit of a mess when the put the needle in - lots of squirting of blood. Nice! :)
No hint as to the results, so I have to wait until a week on Tuesday (the 18th) as expected. No worries. I won't think about it until then, but I do hope for some good news for a change!
Been out to a barbeque today, where I met the Stig from Top Gear. Seriously! I obviously can't tell you anything as I am sworn to top secrecy, suffice to say that it is not Michael Schumacher! Nice bloke though, and not what I would have expected. I should have asked him if he has an "I am the Stig" T-shirt - that would be funny. And by the way, no I can't get any tickets for Top Gear ...
I actually know someone in Norway called Stig. Cool name!
Good to see the footie season starting again after such a long break (not). Premier league starts next week so we'll see if Peter Crouch can make a difference for Spurs this season. Hopefully no more relegation scares this year!
Rest week this week as my oncologist is on vacation, but I'll hopefully post once or twice to show that I'm still here!
Anyway, enough babble for now - have a good rest of the weekend and a pleasant week to come,
Cheers,
Col.
Monday, 3 August 2009
Monday 3rd August 2009
Chemo Cycle 2 Day 15
Start of the third week of this cycle - the "recovery" week.
I've not had much to recover from side-effects wise, but I have noticed a marked dip in energy over the last few days. I think I had a bit of this last time although I didn't refer to it in my posts at the time. I think there is a combination of factors of coming off the steroids, and the dip in blood count in the middle week, but I've been really struggling to do anything at all, and going up stairs leaves me breathless.
Hopefully things will pick up a bit this week as it has been a real mental struggle to get out of bed and force myself to eat something. I'm going to investigate the possibility of staying on a low-dose steroid full time. I know that the course I have is to prevent an allergic reaction to the chemo drugs, but the fact that they give me energy and an appetite is a real boon, so I'm wondering if they would continue to provide that benefit if I stayed on them. Of course, the effects of these things often wear off with continued use, so I'm not certain my GP will be in favour, but its worth asking I think.
My scan appointment has come in for this Friday, although I don't think I'll get the results until the 18th. I am very conscious of the importance of this one - it's really the make or break scan and a lot of my future plans depend on the outcome. It's really the indicator as to whether I have 6 months or so to live, or hopefully considerably longer, based on whether the cancer has reacted to the chemo or not. It's odd writing that down, but it really is as black and white as that. It's also the real last chance for anything positive - if it comes out well, then more treatment, if negative then they effectively give up on me and switch to treatment of symptoms only.
As you have probably figured out, I'm pretty good at not worrying until there is something to worry about, so this isn't playing on my mind, although I am definitely thinking about it a bit this time.
That's all for today - time to find some lunch ...
Cheers,
C.
Start of the third week of this cycle - the "recovery" week.
I've not had much to recover from side-effects wise, but I have noticed a marked dip in energy over the last few days. I think I had a bit of this last time although I didn't refer to it in my posts at the time. I think there is a combination of factors of coming off the steroids, and the dip in blood count in the middle week, but I've been really struggling to do anything at all, and going up stairs leaves me breathless.
Hopefully things will pick up a bit this week as it has been a real mental struggle to get out of bed and force myself to eat something. I'm going to investigate the possibility of staying on a low-dose steroid full time. I know that the course I have is to prevent an allergic reaction to the chemo drugs, but the fact that they give me energy and an appetite is a real boon, so I'm wondering if they would continue to provide that benefit if I stayed on them. Of course, the effects of these things often wear off with continued use, so I'm not certain my GP will be in favour, but its worth asking I think.
My scan appointment has come in for this Friday, although I don't think I'll get the results until the 18th. I am very conscious of the importance of this one - it's really the make or break scan and a lot of my future plans depend on the outcome. It's really the indicator as to whether I have 6 months or so to live, or hopefully considerably longer, based on whether the cancer has reacted to the chemo or not. It's odd writing that down, but it really is as black and white as that. It's also the real last chance for anything positive - if it comes out well, then more treatment, if negative then they effectively give up on me and switch to treatment of symptoms only.
As you have probably figured out, I'm pretty good at not worrying until there is something to worry about, so this isn't playing on my mind, although I am definitely thinking about it a bit this time.
That's all for today - time to find some lunch ...
Cheers,
C.
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