Nothing much to report today.
I've stopped taking the anti-emetic, so I'm down to three tablets in the morning - Omeprazole (PPI - antacid), Fluconazole (anti-fungal) and Piridoxine (Vitamin B6) - one Piridoxine at 3pm and 9pm and 7mg Warfarin at 6pm. At the peak I was taking 7 tablets in the morning and up to 4 at the other times of the day, so I'm on greatly reduced medication now which is good.
Mood is still very good and positive, but I am conscious of the impending possible surgery and the fact that life will never be the same again afterwards, so part of me is thinking that I should be spending January rushing around doing stuff, and the other part of me is thinking that I should be chilling out.
I do plan to try and at least make a trip South to catch up with a few people in the early New Year, but apart from that I've got no real plans as yet. We'll see.
Cheers
Tuesday 30 December 2008
Monday 29 December 2008
Monday 29th December 2008
No unpleasent side-effects from the curry and indeed it was most welcome!
Had weekly blood check today, and all seems to be in order. They phone me if there is anything I need to change around my drugs regime, and they didn't phone me today, so either it is so bad they are scared to tell me, or all is in order. Forgive me if I assume the latter option!
I also just found out that I'm not supposed to have been taking the metoclopramide anti-emetic as a regular dose, but only as required (like the Ondansetron). Five weeks into a six week program, it's a bit late to find that out - still, no wonder I haven't had any real nausea symptoms!
Paid a visit to a great company in Halifax the other day - Andy Thornton's are an architectural salvage company who do bar and hotel fittings and also sell to the public. People might know bars such as Via Fossa in the Gay Village in Manchester or Cafe En Seine in Dublin which were done by them. Here's a couple of things I want to buy but Vanda won't let me ...
Anyway, I digress - this blog is supposed to be about cancer after all ...
Sorry, the main reason for that diversion was that I had my camera out to take a pic of my PICC line (for Kaz's benefit) and I spotted those pics too! So here is the PICC line:
The blue tube goes into the crook of my elbow, then is attached to my arm in two places with clips attached to sticky pads (replaced with nice clean ones today) to stop it getting tugged. The thin blue tube then turns into a wider, clear tube which is folded round just for ease of "storage" when its not in use. The end of the tube is the white/red/blue/white nozzle which is resting on a gauze pad.
The whole lot is then covered in a thin clear dressing (which gets changed every time they need access to the nozzle). All the chemo goes into the nozzle and all my blood tests come out of it, so there is no need for any other injections which is nice. I wear a section of tubigrip over the whole thing as you can see below (except when I'm on the IV in hospital), so I don't even notice it - there's no pain or discomfort of any kind, which I have found quite surprising. The worst thing has been having the clear sticky covering taken off and having the hairs ripped out of my arm, but there aren't any hairs left around that area now, so even that isn't uncomfortable any more.
I do love the message on the sticky pads - "remove with alcohol" - the sort of message you'd expect to see on a pair of saucy underwear! :)
Anyway, enough for now. Hope you enjoyed the pictures!
C x
Had weekly blood check today, and all seems to be in order. They phone me if there is anything I need to change around my drugs regime, and they didn't phone me today, so either it is so bad they are scared to tell me, or all is in order. Forgive me if I assume the latter option!
I also just found out that I'm not supposed to have been taking the metoclopramide anti-emetic as a regular dose, but only as required (like the Ondansetron). Five weeks into a six week program, it's a bit late to find that out - still, no wonder I haven't had any real nausea symptoms!
Paid a visit to a great company in Halifax the other day - Andy Thornton's are an architectural salvage company who do bar and hotel fittings and also sell to the public. People might know bars such as Via Fossa in the Gay Village in Manchester or Cafe En Seine in Dublin which were done by them. Here's a couple of things I want to buy but Vanda won't let me ...
Anyway, I digress - this blog is supposed to be about cancer after all ...
Sorry, the main reason for that diversion was that I had my camera out to take a pic of my PICC line (for Kaz's benefit) and I spotted those pics too! So here is the PICC line:
The blue tube goes into the crook of my elbow, then is attached to my arm in two places with clips attached to sticky pads (replaced with nice clean ones today) to stop it getting tugged. The thin blue tube then turns into a wider, clear tube which is folded round just for ease of "storage" when its not in use. The end of the tube is the white/red/blue/white nozzle which is resting on a gauze pad.The whole lot is then covered in a thin clear dressing (which gets changed every time they need access to the nozzle). All the chemo goes into the nozzle and all my blood tests come out of it, so there is no need for any other injections which is nice. I wear a section of tubigrip over the whole thing as you can see below (except when I'm on the IV in hospital), so I don't even notice it - there's no pain or discomfort of any kind, which I have found quite surprising. The worst thing has been having the clear sticky covering taken off and having the hairs ripped out of my arm, but there aren't any hairs left around that area now, so even that isn't uncomfortable any more.
I do love the message on the sticky pads - "remove with alcohol" - the sort of message you'd expect to see on a pair of saucy underwear! :)
Anyway, enough for now. Hope you enjoyed the pictures!
C x
Sunday 28 December 2008
Sunday 28th December 2008
Big day today ....
I'm just about to order my first curry since my diagnosis!
It's the first time I've really felt like one to be honest, and I have been a bit nervous about hot food triggering the ulcers, as it was some tabasco in a sauce which probably set the last lot off (although I already had the sore throat at that point). I figure that I'm far enough out of the "ulcer zone" and haven't had any issues with my mouth at all since a bit of dryness at the start of the week, so its worth the risk.
It's bad enough cutting out nearly all my drinking, but to cut out curry too would just be WRONG.
Wish me luck, I'm going in ...
I'm just about to order my first curry since my diagnosis!
It's the first time I've really felt like one to be honest, and I have been a bit nervous about hot food triggering the ulcers, as it was some tabasco in a sauce which probably set the last lot off (although I already had the sore throat at that point). I figure that I'm far enough out of the "ulcer zone" and haven't had any issues with my mouth at all since a bit of dryness at the start of the week, so its worth the risk.
It's bad enough cutting out nearly all my drinking, but to cut out curry too would just be WRONG.
Wish me luck, I'm going in ...
Saturday 27 December 2008
Saturday 27th December 2008
Short one today - feel fine, no side effects of any kind and generally having another lazy day's eating!
Just watched the Shameless Christmas special which I recorded on Christmas eve. A classic! All very close to home from when I lived in Salford! :)
Cheers again!
Just watched the Shameless Christmas special which I recorded on Christmas eve. A classic! All very close to home from when I lived in Salford! :)
Cheers again!
Friday 26 December 2008
Boxing Day 2008
Brilliant day yesterday!
Dinner came together like perfection - all the timings coincided and everything was bloody gorgeous! Haven't enjoyed a meal like that for a very long time, and the fact that I managed to hold the ulcers at bay made it doubly lovely!
Really nice day overall too, usual combination of relaxing, eating, telly, great presents, eating more, and more drinking than I've done for quite a long time - enough to give me a headache for a short while this morning!
Today has been more of the same, although I've just had a bit of a funny turn. I get a bit wobbly every now and then and my temperature drops (I assume it is blood pressure related). Nothing that an hour on the sofa doesn't sort out, but unfortunately it came on just as we were about to pop out and see a couple of friends which was a shame. I suppose it is just a reminder that I'm still in the middle of a chemo cycle - it's difficult to remember sometimes as it's been so little of a chore to be honest. I'm probably at my low point of the cycle actually, as far as my blood count is concerned (the "nadir" as they call it was probably yesterday or today), so I guess a short funny turn is nothing unexpected. I'll keep an eye on it, but I don't think there is anything sinister, just part of the process.
Worst side effect of the last day or so is having more of an affect on Vanda than me to be honest - there are some rather nasty smells leaking out of my rear end! Man, these farts are bad - I'm even making myself gag!
Anyway, I'm still doing well besides the dodgy aroma, so that's enough for now.
I hope you all had as good a time yesterday and today as me, and that you continue to enjoy the break (if you have one of course)!
Cheers
Dinner came together like perfection - all the timings coincided and everything was bloody gorgeous! Haven't enjoyed a meal like that for a very long time, and the fact that I managed to hold the ulcers at bay made it doubly lovely!
Really nice day overall too, usual combination of relaxing, eating, telly, great presents, eating more, and more drinking than I've done for quite a long time - enough to give me a headache for a short while this morning!
Today has been more of the same, although I've just had a bit of a funny turn. I get a bit wobbly every now and then and my temperature drops (I assume it is blood pressure related). Nothing that an hour on the sofa doesn't sort out, but unfortunately it came on just as we were about to pop out and see a couple of friends which was a shame. I suppose it is just a reminder that I'm still in the middle of a chemo cycle - it's difficult to remember sometimes as it's been so little of a chore to be honest. I'm probably at my low point of the cycle actually, as far as my blood count is concerned (the "nadir" as they call it was probably yesterday or today), so I guess a short funny turn is nothing unexpected. I'll keep an eye on it, but I don't think there is anything sinister, just part of the process.
Worst side effect of the last day or so is having more of an affect on Vanda than me to be honest - there are some rather nasty smells leaking out of my rear end! Man, these farts are bad - I'm even making myself gag!
Anyway, I'm still doing well besides the dodgy aroma, so that's enough for now.
I hope you all had as good a time yesterday and today as me, and that you continue to enjoy the break (if you have one of course)!
Cheers
Thursday 25 December 2008
Wednesday 24 December 2008
Christmas Eve 2008! :)
Hi All,
'Tis Xmas Eve and all is well!
No ulcers in sight and no scary shark-related dreams.
Colin the Caterpillar is no more - he has finally had his face eaten - so birthday celebrations are finally over and Christmas can begin in earnest!
So bring on the turkey, roasties, port and stilton, put away that blender, and let's go!!
Sadly will forgo the usual trip to the pub tonight, but I think a little snifter at home is probably in order - please join me (if you haven't already)!
So if there is anyone actually reading this on Christmas Eve, thanks, and have a fantastic day tomorrow, may your celebrations (whatever they may be) go spiffingly!
Happy Christmas Everybody!
Colin x
'Tis Xmas Eve and all is well!
No ulcers in sight and no scary shark-related dreams.
Colin the Caterpillar is no more - he has finally had his face eaten - so birthday celebrations are finally over and Christmas can begin in earnest!
So bring on the turkey, roasties, port and stilton, put away that blender, and let's go!!
Sadly will forgo the usual trip to the pub tonight, but I think a little snifter at home is probably in order - please join me (if you haven't already)!
So if there is anyone actually reading this on Christmas Eve, thanks, and have a fantastic day tomorrow, may your celebrations (whatever they may be) go spiffingly!
Happy Christmas Everybody!
Colin x
Tuesday 23 December 2008
Tuesday 23rd December 2008
Ok, scary day!
I'm feeling ok - ulcers haven't flared up and are actually probably better than yesterday although I am conscious of something there. Been a bit wobbly at points today - it feels as though my blood pressure has been going up and down a bit (felt a bit unsteady in M&S during food shopping!). Back home now and feeling more stable, so no problems.
The big thing today has been the meeting with the surgeon. A couple of surprises which I will go into, but mostly as expected, but actually having a real face-to-face conversation about it brought it home a bit how real and scary this is going to be ...
He confirmed that there is this area of uncertainty due to the unquantifiable nodule, but that they are assuming they can go ahead (we'll know for sure on the 14th Jan). He told me that he has been doing this particular operation for 7 years and the team of three of them do about 40 of these a year between them. He doesn't see any issues with me, particularly given my age, and expects it to be straightforward, although he did remind me that this is one of the most major surgeries that you can have.
Risk-wise, there is an overall 3% mortality rate, but given my age and fitness he reckoned this would be more like 0.2% - good odds, but obviously not 100% of course - no surprises there.
The main shock was that they plan to remove the whole gullet, not just the bottom section as I had been led to believe. This will mean an incision in the neck (fairly small - 2 or 3 inches I think). They then pull the stomach all the way up to meet the gullet near the neck, so I end up with a long thin stomach instead of a saggy bag.
The other shock was the size of the lower incision. This will go from almost under my arm (probably on the left side, but this will depend on the scan) right across my stomach and almost to my belly button - I figure that's some 12 inches or more, which is more significant than I expected and is very scary!
So much for thinking that I'd have nice cool scars to impress the girls, it now seems as though I'm going to look like I've been sliced in half! I think I'm going to have to ask him to cut some teeth marks into it to make it look like a shark bite.
Despite all this, he expects that I will only have about 2 weeks in hospital and will then be able to walk out. This will be followed by quite a long convalescence at home, but it seems, not immobilised flat on my back, but able to move about etc, which is quite amazing. He even suggested I might be raring to get back to work after only 6 weeks - not sure about that myself though!
Long term he expects me to be eating and drinking normally (I will get full more quickly, so smaller meals, more regularly, but then I knew that), exercising normally etc with no real restrictions on my life.
Of course as this is cancer, there is a high chance of a recurrence, and currently the survival rate (i.e. 100% lifetime cure) of this type of cancer is only 35%, but again, I'm not too worried about what kills me in the end (if it's not cancer it would be heart disease or something like that anyway), its more about how long I get from now until then, and even if the cancer reoccurs it doesn't necessarily mean that it happens quickly and many people live long and almost normal lives. I guess it's the not knowing that is the hard bit once you've come out of the other side of the first bout, but at least once you've had it once they are looking more actively for a recurrence and more likely to catch it quick.
I'm obviously focused on being one of the 99.8% who survive the surgery and one of the 35% who are completely cured, but I am realistic to the alternatives - I'll just deal with them if it ever comes to that!
Martin, any of that spicy enough for you? :)
By the way, continued thanks for the cards, calls, texts, blog comments, good wishes, abuse (thanks again Martin) - you all really are helping and I really do appreciate it!
Cheers,
Colin x
I'm feeling ok - ulcers haven't flared up and are actually probably better than yesterday although I am conscious of something there. Been a bit wobbly at points today - it feels as though my blood pressure has been going up and down a bit (felt a bit unsteady in M&S during food shopping!). Back home now and feeling more stable, so no problems.
The big thing today has been the meeting with the surgeon. A couple of surprises which I will go into, but mostly as expected, but actually having a real face-to-face conversation about it brought it home a bit how real and scary this is going to be ...
He confirmed that there is this area of uncertainty due to the unquantifiable nodule, but that they are assuming they can go ahead (we'll know for sure on the 14th Jan). He told me that he has been doing this particular operation for 7 years and the team of three of them do about 40 of these a year between them. He doesn't see any issues with me, particularly given my age, and expects it to be straightforward, although he did remind me that this is one of the most major surgeries that you can have.
Risk-wise, there is an overall 3% mortality rate, but given my age and fitness he reckoned this would be more like 0.2% - good odds, but obviously not 100% of course - no surprises there.
The main shock was that they plan to remove the whole gullet, not just the bottom section as I had been led to believe. This will mean an incision in the neck (fairly small - 2 or 3 inches I think). They then pull the stomach all the way up to meet the gullet near the neck, so I end up with a long thin stomach instead of a saggy bag.
The other shock was the size of the lower incision. This will go from almost under my arm (probably on the left side, but this will depend on the scan) right across my stomach and almost to my belly button - I figure that's some 12 inches or more, which is more significant than I expected and is very scary!
So much for thinking that I'd have nice cool scars to impress the girls, it now seems as though I'm going to look like I've been sliced in half! I think I'm going to have to ask him to cut some teeth marks into it to make it look like a shark bite.
Despite all this, he expects that I will only have about 2 weeks in hospital and will then be able to walk out. This will be followed by quite a long convalescence at home, but it seems, not immobilised flat on my back, but able to move about etc, which is quite amazing. He even suggested I might be raring to get back to work after only 6 weeks - not sure about that myself though!
Long term he expects me to be eating and drinking normally (I will get full more quickly, so smaller meals, more regularly, but then I knew that), exercising normally etc with no real restrictions on my life.
Of course as this is cancer, there is a high chance of a recurrence, and currently the survival rate (i.e. 100% lifetime cure) of this type of cancer is only 35%, but again, I'm not too worried about what kills me in the end (if it's not cancer it would be heart disease or something like that anyway), its more about how long I get from now until then, and even if the cancer reoccurs it doesn't necessarily mean that it happens quickly and many people live long and almost normal lives. I guess it's the not knowing that is the hard bit once you've come out of the other side of the first bout, but at least once you've had it once they are looking more actively for a recurrence and more likely to catch it quick.
I'm obviously focused on being one of the 99.8% who survive the surgery and one of the 35% who are completely cured, but I am realistic to the alternatives - I'll just deal with them if it ever comes to that!
Martin, any of that spicy enough for you? :)
By the way, continued thanks for the cards, calls, texts, blog comments, good wishes, abuse (thanks again Martin) - you all really are helping and I really do appreciate it!
Cheers,
Colin x
Monday 22 December 2008
Monday 22nd December 2008
Been in to have my bottle removed today - it finally managed to dispense the last of the treatment, (nearly two days late) - that should now be it for stuff going up my arm! However, I still have to have the PICC line in there until they decide in mid Jan whether to go ahead with the surgery, just in case they can't go ahead and I have to have more chemo. So baths it is for the forseeable future then! :)
Some evidence of ulcers returning today, which is right on schedule based on the previous cycle. Not uncomfortable yet, just the feeling of a dry mouth prior to full development. I'm already mouthwashing with the Difflam, and having been on the anti-fungals for about three weeks now, I'm still hoping things don't develop too badly like last time. I'll keep you informed, and I have the blender at the ready!
Appointment with the surgeon tomorrow morning. I'm taking a big felt-tip and I'm going to ask him to draw where the scars will be on my stomach and chest so I can get used to the idea - maybe sounds a bit weird, but I just want to understand the likely impact to mobility etc as soon as possible, so I don't wake up from the surgery to a big shock.
Company travel insurance has come back to say that I will be covered for any unexpected stuff. This means that I will have to have a "fit to fly" certificate from my GP before I travel. As I have been used to travelling most weeks, and sometimes more than once a week, this will be fun if I need a certificate for every journey - I'd need my own dedicated Doc to keep writing the notes (Dave, can you give me a signed pad??) I've queried the request and I hope they will clarify that they need a note only monthly, six-monthly or even annually which would be ok. I know this shouldn't really be of concern at this stage, but I do want to ensure that I get all this beaurocracy out the way whilst I'm fit.
Important news today is that I ordered a new 50" plasma telly for delivery on Christmas eve. That's me sorted then!
By the way ... why is there an expiration date on sour cream?
Some evidence of ulcers returning today, which is right on schedule based on the previous cycle. Not uncomfortable yet, just the feeling of a dry mouth prior to full development. I'm already mouthwashing with the Difflam, and having been on the anti-fungals for about three weeks now, I'm still hoping things don't develop too badly like last time. I'll keep you informed, and I have the blender at the ready!
Appointment with the surgeon tomorrow morning. I'm taking a big felt-tip and I'm going to ask him to draw where the scars will be on my stomach and chest so I can get used to the idea - maybe sounds a bit weird, but I just want to understand the likely impact to mobility etc as soon as possible, so I don't wake up from the surgery to a big shock.
Company travel insurance has come back to say that I will be covered for any unexpected stuff. This means that I will have to have a "fit to fly" certificate from my GP before I travel. As I have been used to travelling most weeks, and sometimes more than once a week, this will be fun if I need a certificate for every journey - I'd need my own dedicated Doc to keep writing the notes (Dave, can you give me a signed pad??) I've queried the request and I hope they will clarify that they need a note only monthly, six-monthly or even annually which would be ok. I know this shouldn't really be of concern at this stage, but I do want to ensure that I get all this beaurocracy out the way whilst I'm fit.
Important news today is that I ordered a new 50" plasma telly for delivery on Christmas eve. That's me sorted then!
By the way ... why is there an expiration date on sour cream?
Sunday 21 December 2008
Sunday 21st December 2008
Excellent gig last night at Dave's birthday - good do all round, and good to catch up with a few old faces!
My 5FU pump appears to have been playing up a little though, and it should have been empty at 9pm last night, but still appears to have a day's-worth in it. I've been over to the hospital today and they've flushed my PICC line out and reconnected the bottle, so hopefully the flow will pick up and I can have it taken off tomorrow instead. No big deal, it's not intrusive at all really so its no problem if it has to stay on another day or so.
Martin (band manager and theatrical empessario) commented that my blog needed a bit of spicing up and that I should start making some stuff up, so here, especially for Martin is a section of pure fallacy:
When disconnecting my bottle just now, the pressure that had built up in the pipe caused blood to spurt all over the ward and left patients screaming with burning platinum-filled eyes - the nurse, flinching from the shock, knocked over a hot cauldron of swiss cheese fondue which had been cooking ready for this evening's ward [swiss] tarts and vicars party - the fondue spilled on my legs and has meant an emergency double amputation, which was a bit sore. Apart from that though, everything is fine!
Ok, end of Martin's section, back to the dull fact that apart from Spurs just this second having lost a crucial game to Newcastle in the last minute [gutted!], everything genuinely is ok - I'm feeling really good.
I am on a reducing dose of doxamethasone which is a steriod. This appears to give me increased appetite and energy which is very welcome. However, today is the first reduced dose and tomorrow morning is the last couple of tablets, so unfortunately this feeling of euphoria will subside a bit, like last time (some of you may remember talking to me on the phone during this period of the last cycle - that's why you couldn't shut me up!)
Just been to the wine shop and followed doctors orders - "concentrate on quality not quantity" - if I'm not going to feel like drinking much over Christmas, I'm going to make sure every drop that passes my lips is top quality - just spent an absolute fortune on a bottle of 1983 Graham's Vintage Port - lovely jubbley!
Sorry, have to go and be sad - I cannot believe we've just thrown away the Newcastle game!! Gutted, gutted, gutted!
My 5FU pump appears to have been playing up a little though, and it should have been empty at 9pm last night, but still appears to have a day's-worth in it. I've been over to the hospital today and they've flushed my PICC line out and reconnected the bottle, so hopefully the flow will pick up and I can have it taken off tomorrow instead. No big deal, it's not intrusive at all really so its no problem if it has to stay on another day or so.
Martin (band manager and theatrical empessario) commented that my blog needed a bit of spicing up and that I should start making some stuff up, so here, especially for Martin is a section of pure fallacy:
When disconnecting my bottle just now, the pressure that had built up in the pipe caused blood to spurt all over the ward and left patients screaming with burning platinum-filled eyes - the nurse, flinching from the shock, knocked over a hot cauldron of swiss cheese fondue which had been cooking ready for this evening's ward [swiss] tarts and vicars party - the fondue spilled on my legs and has meant an emergency double amputation, which was a bit sore. Apart from that though, everything is fine!
Ok, end of Martin's section, back to the dull fact that apart from Spurs just this second having lost a crucial game to Newcastle in the last minute [gutted!], everything genuinely is ok - I'm feeling really good.
I am on a reducing dose of doxamethasone which is a steriod. This appears to give me increased appetite and energy which is very welcome. However, today is the first reduced dose and tomorrow morning is the last couple of tablets, so unfortunately this feeling of euphoria will subside a bit, like last time (some of you may remember talking to me on the phone during this period of the last cycle - that's why you couldn't shut me up!)
Just been to the wine shop and followed doctors orders - "concentrate on quality not quantity" - if I'm not going to feel like drinking much over Christmas, I'm going to make sure every drop that passes my lips is top quality - just spent an absolute fortune on a bottle of 1983 Graham's Vintage Port - lovely jubbley!
Sorry, have to go and be sad - I cannot believe we've just thrown away the Newcastle game!! Gutted, gutted, gutted!
Saturday 20 December 2008
Saturday 20th December 2008
Felling a lot better today - still an odd feeling of woozyness, but it's not affecting my ability to drive or lead a normal life.
Most frustrating thing at the moment is wanting to catch up face-to-face with friends, but everyone has colds and flu and I can't afford to expose myself to that for any length of time - worst time of the year to be susceptible to infection!
Been a really grey day in Halifax today - it doesn't seem to have got properly light at all all day. Eee, it's grim oop North! :) Due for some better weather Monday hopefully, but at least I've been able to go out and get my last present, so I'm all sorted. Just the food shop to do now, Monday or Tuesday and we'll be all set.
Short one today - got to get ready for the gig tonight.
See you!
Most frustrating thing at the moment is wanting to catch up face-to-face with friends, but everyone has colds and flu and I can't afford to expose myself to that for any length of time - worst time of the year to be susceptible to infection!
Been a really grey day in Halifax today - it doesn't seem to have got properly light at all all day. Eee, it's grim oop North! :) Due for some better weather Monday hopefully, but at least I've been able to go out and get my last present, so I'm all sorted. Just the food shop to do now, Monday or Tuesday and we'll be all set.
Short one today - got to get ready for the gig tonight.
See you!
Friday 19 December 2008
Friday 19th December 2008
Slightly better day today - some nausea, but not as bad as yesterday. Still a bit woozy, but I seem to remember that only lasted a couple of days last time.
Sleeping pretty well all the same, except with this being Christmas we seem to get a queue of posties turning up at the door with parcels, starting at about 7.30am, which is early for me at the moment, so I have to keep leaping out of bed from a rude awakening to sign for yet another cool Christmas present - which turns out to be a work presentation on a memory stick for Vanda which needs signing for (two duplicate copies at 7.30am on two days running - nice work R*%£$e!)
Christmas card marathon completed now though, and only a few presents still to buy (I LOVE the Internet!), so we're hoping for a nice relaxing Christmas - hopefully nausea and ulcer-free!
Colin the Caterpillar is somewhat shorter than he was yesterday and is proving an adequate rival for "Vienna cake", so I'm certainly not losing weight during this process!
Happy Birthday to 40-year old Dr Dave today (yes, 40! Who'd ever have thought it!) - looking forward to playing at the party tomorrow night, although the commensurate amount of alcohol the occasion deserves will be sadly lacking from my evening - I suppose I can take my camera and be the annoying sober guy who makes your worst nightmares come true when you only thought that you might have made that embarrassing faux-pas the night before - blackmail plans at the ready!
Cheers for now ...
Sleeping pretty well all the same, except with this being Christmas we seem to get a queue of posties turning up at the door with parcels, starting at about 7.30am, which is early for me at the moment, so I have to keep leaping out of bed from a rude awakening to sign for yet another cool Christmas present - which turns out to be a work presentation on a memory stick for Vanda which needs signing for (two duplicate copies at 7.30am on two days running - nice work R*%£$e!)
Christmas card marathon completed now though, and only a few presents still to buy (I LOVE the Internet!), so we're hoping for a nice relaxing Christmas - hopefully nausea and ulcer-free!
Colin the Caterpillar is somewhat shorter than he was yesterday and is proving an adequate rival for "Vienna cake", so I'm certainly not losing weight during this process!
Happy Birthday to 40-year old Dr Dave today (yes, 40! Who'd ever have thought it!) - looking forward to playing at the party tomorrow night, although the commensurate amount of alcohol the occasion deserves will be sadly lacking from my evening - I suppose I can take my camera and be the annoying sober guy who makes your worst nightmares come true when you only thought that you might have made that embarrassing faux-pas the night before - blackmail plans at the ready!
Cheers for now ...
Thursday 18 December 2008
Thursday 18th December 2008
Not such a good day so far today. For the first time since the start of the chemo the nausea has reared its head significantly. I've felt a bit sick all day, despite being at the start of the cycle so having all the extra anti-emetics like the Emend and the Dexamethosone. I've even had only my second Ondansetron (optional and powerful anti-emetic) since starting chemo, which has helped a little, but not completely.
So the cycle of "every day a different side-effect" seems to be continuing! Still, as I say, nausea is not an uncommon feeling for me, so I can handle it for a while - hope I get on top of it a bit though as we go through this cycle - I don't fancy being like this for three weeks, even though I know that could be likely.
Spoke to the chemo nurses this morning about my hair, and they think that it will only thin rather than drop out completely, as hair loss is not a major side-effect of my particular chemo drugs, so no fancy wigs required as yet (although I might take a sneaky look all the same!)
Ray and Clare - finally finished the Vienna cake today, so Colin the Caterpillar is about to get his tail chopped off! Thanks again, it was a lovely thought (and an even lovelier cake!)
Looking forward to a brighter day tomorrow - see you then!
So the cycle of "every day a different side-effect" seems to be continuing! Still, as I say, nausea is not an uncommon feeling for me, so I can handle it for a while - hope I get on top of it a bit though as we go through this cycle - I don't fancy being like this for three weeks, even though I know that could be likely.
Spoke to the chemo nurses this morning about my hair, and they think that it will only thin rather than drop out completely, as hair loss is not a major side-effect of my particular chemo drugs, so no fancy wigs required as yet (although I might take a sneaky look all the same!)
Ray and Clare - finally finished the Vienna cake today, so Colin the Caterpillar is about to get his tail chopped off! Thanks again, it was a lovely thought (and an even lovelier cake!)
Looking forward to a brighter day tomorrow - see you then!
Wednesday 17 December 2008
Wednesday 17th December 2008 - Part 3 - Blog info
I have been asked about the "Follow this Blog" link and what it does.
It doesn't do what I thought it did and forward posts to your email address so you know when I've made one, it's actually just a mechanism for showing support for the blog, which helps to publicise that it is a popular blog and encourages other people to sign up - I suppose it's more for "opinion" blogs than this personal type, but I'm very grateful for those who have signed up as followers - it helps to encourage me to keep going with it as I know people are interested. If anyone else wants to sign up. please do.
If you have problems with nothing happening when you click on the "Follow this Blog" link, it is to do with your browser blocking pop-ups. You will probably get a message at the top of the page telling you that pop-ups have been blocked. There is usually an "options" button next to the message, one of which is "temporarily allow pop-ups for this page" select that and try again and all should be ok.
If any of you DO want to be notified automatically when I make a post so that you don't have to keep checking in, then I can add your email address to an area on the blog setup page which will make this happen. Your email will not be visible to anyone else but me, so no chance of spamming.
Talking of which, if you want me to add you to the list, don't post your email in the comments, but send it to my yahoo email (which already gets spammed relentlessly, so no problem putting it here): sploid2003@yahoo.com don't ask me why I chose that name though!
Overall, thanks for your support of the blog and all your comments so far, either via the blog or via email/phone, it is much appreciated and I fully intend to keep the posting up, even when I'm bald!
Cheers,
C
It doesn't do what I thought it did and forward posts to your email address so you know when I've made one, it's actually just a mechanism for showing support for the blog, which helps to publicise that it is a popular blog and encourages other people to sign up - I suppose it's more for "opinion" blogs than this personal type, but I'm very grateful for those who have signed up as followers - it helps to encourage me to keep going with it as I know people are interested. If anyone else wants to sign up. please do.
If you have problems with nothing happening when you click on the "Follow this Blog" link, it is to do with your browser blocking pop-ups. You will probably get a message at the top of the page telling you that pop-ups have been blocked. There is usually an "options" button next to the message, one of which is "temporarily allow pop-ups for this page" select that and try again and all should be ok.
If any of you DO want to be notified automatically when I make a post so that you don't have to keep checking in, then I can add your email address to an area on the blog setup page which will make this happen. Your email will not be visible to anyone else but me, so no chance of spamming.
Talking of which, if you want me to add you to the list, don't post your email in the comments, but send it to my yahoo email (which already gets spammed relentlessly, so no problem putting it here): sploid2003@yahoo.com don't ask me why I chose that name though!
Overall, thanks for your support of the blog and all your comments so far, either via the blog or via email/phone, it is much appreciated and I fully intend to keep the posting up, even when I'm bald!
Cheers,
C
Wednesday 17th December 2008 - Part 2
Back home now.
Nearly had a disaster in the hospital. They cocked up my lunch order and brought me cheese and biscuits instead of jelly and ice cream!! I had to leap out of bed, stamp my feet and threaten to scweam and scweam until I got my way. It worked, and it was worth it. Lovely!
So some recommendations for you, based on my experience to date:
1. Once in a while, take a bath not a shower. Due to the PICC line in my arm, I have to "bathe in my own dirt" (as the French used to describe the British bathing habit), so that I can keep my arm hanging out the side. However, its a much more relaxing and pleasurable experience than a shower, and I never usually make the time. You should all try it!
2. Retry the food and drink you used to enjoy. I've been re-introduced to semolina, Ovaltine, Jelly and ice cream, bourbon biscuits and traditional porridge with milk (or salt if you are a true Scot - not sugar, mind!) all in the space of 4 days under the NHS - wonderful!
As I say, I'm back home now, with my faithful companion re-attached around my waist until Sunday. I'm feeling ok, a bit woozy like last time, and a mild touch of nausea - nothing serious enough to dive for the Ondansetron yet, but I'll keep an eye on it.
Looks like I got away with the D&V bug (the Norovirus, or Winter Vomiting Bug which has been on the news recently) - hope I'm not speaking too soon though. However, I have noticed I am losing a few hairs in the sink. They don't appear to be dropping out, but if I pull, there are a few that come away - It may not get any worse as I'm only having two cycles, but some of you mickey-takers might get your moment after all! If it all drops out, I'll be looking for a cool wig for the Winter - maybe a set of rastafarian dreadlocks, or a Georgian lime green beehive?
Bye for now! I'm going to do another post about the blog now, but I'll keep that separate ...
Nearly had a disaster in the hospital. They cocked up my lunch order and brought me cheese and biscuits instead of jelly and ice cream!! I had to leap out of bed, stamp my feet and threaten to scweam and scweam until I got my way. It worked, and it was worth it. Lovely!
So some recommendations for you, based on my experience to date:
1. Once in a while, take a bath not a shower. Due to the PICC line in my arm, I have to "bathe in my own dirt" (as the French used to describe the British bathing habit), so that I can keep my arm hanging out the side. However, its a much more relaxing and pleasurable experience than a shower, and I never usually make the time. You should all try it!
2. Retry the food and drink you used to enjoy. I've been re-introduced to semolina, Ovaltine, Jelly and ice cream, bourbon biscuits and traditional porridge with milk (or salt if you are a true Scot - not sugar, mind!) all in the space of 4 days under the NHS - wonderful!
As I say, I'm back home now, with my faithful companion re-attached around my waist until Sunday. I'm feeling ok, a bit woozy like last time, and a mild touch of nausea - nothing serious enough to dive for the Ondansetron yet, but I'll keep an eye on it.
Looks like I got away with the D&V bug (the Norovirus, or Winter Vomiting Bug which has been on the news recently) - hope I'm not speaking too soon though. However, I have noticed I am losing a few hairs in the sink. They don't appear to be dropping out, but if I pull, there are a few that come away - It may not get any worse as I'm only having two cycles, but some of you mickey-takers might get your moment after all! If it all drops out, I'll be looking for a cool wig for the Winter - maybe a set of rastafarian dreadlocks, or a Georgian lime green beehive?
Bye for now! I'm going to do another post about the blog now, but I'll keep that separate ...
Wednesday 17th December 2008
Part 2 of the live broadcast from WARD 12!
Its 11am, and I have just over 3 hours of saline IV left before I can go home.
Again its not been too bad an experience. Didn't sleep too well due to the endless need to get up for a wee (11 times so far and counting!) but no drama of any kind.
The nurses here are great despite trying to cope when half the ward beds are closed due to the d&v bug (haven't got it yet - fingers crossed), but its also people like the tea lady who help you stay positive - she's so upbeat and jolly. I wish there were more people in the World like her!
I've got a mountain of extra drug supplies, so I'm thinking of starting my own pharmacy - anyone need an anti-nausea pill, or super-strong painkiller for Boxing Day? I don't expect a response from any of you medical types by the way - from previous experience I guess you already have everything you could ever need ;)
I've been reliving my youth at mealtimes here - bourbon biscuits and semolina (nice, but no dollop of jam, sadly) yesterday, proper porridge with milk this morning, and jelly and ice cream for dins - who said hospital food was crap, and this part of my treatment is on the NHS, so we're not even talking private here!
Don't worry, I have been eating savoury too - its just that the puddings have been most memorable!
That's all for now - may post again from home later if I get around to it, but now I need to go for wee #12!
bye for now!
Its 11am, and I have just over 3 hours of saline IV left before I can go home.
Again its not been too bad an experience. Didn't sleep too well due to the endless need to get up for a wee (11 times so far and counting!) but no drama of any kind.
The nurses here are great despite trying to cope when half the ward beds are closed due to the d&v bug (haven't got it yet - fingers crossed), but its also people like the tea lady who help you stay positive - she's so upbeat and jolly. I wish there were more people in the World like her!
I've got a mountain of extra drug supplies, so I'm thinking of starting my own pharmacy - anyone need an anti-nausea pill, or super-strong painkiller for Boxing Day? I don't expect a response from any of you medical types by the way - from previous experience I guess you already have everything you could ever need ;)
I've been reliving my youth at mealtimes here - bourbon biscuits and semolina (nice, but no dollop of jam, sadly) yesterday, proper porridge with milk this morning, and jelly and ice cream for dins - who said hospital food was crap, and this part of my treatment is on the NHS, so we're not even talking private here!
Don't worry, I have been eating savoury too - its just that the puddings have been most memorable!
That's all for now - may post again from home later if I get around to it, but now I need to go for wee #12!
bye for now!
Tuesday 16 December 2008
Tuesday 16th December 2008
ok, here is your correspondent, making the first post via HP iPAQ handheld live from room 1, ward 12, Huddersfield Royal Infirmary!
I'm nearly done with my first two-hour bag of saline, and to be honest I'm happy as a pig in poo.
I have a nice comfy recliner, an ensuite loo and a BED TABLE! And yes, that's a big deal. Last time, due to lack of available rooms, I was in a treatment room - bog-standard chair, no ensuite and no table, which was a pain!
This time I'm in absolute luxury!
Only bad news is that the hospital in general and the other side of this ward in particular is suffering from the Diarrhea and Vomiting bug which has been on the news the last couple of days, so I've got to try not to catch that one!
The ward Sister just said that if it wasn't for the evidence that I was having chemo, she would think that I was a fraud because I appear so fit and healthy, which was a nice thing to hear (unless she says it to everyone of course!)
First bag just finished, another 2-hour bag just fitted. Started earlier this cycle, which means I get to go home earlier tomorrow, but unfortunately means that I will have a bag change at about 5am in the morning and will be woken up by the now familiar "bing, bing, bong" of the iv machine when it runs out (anyone who's ever been on an iv drip will know what I mean!).
Anyway, enough rambling for today, be sure to check back tomorrow for the next enthralling installment of "live from ward 12" Ha ha!
Now let's see if this posting works! ...
I'm nearly done with my first two-hour bag of saline, and to be honest I'm happy as a pig in poo.
I have a nice comfy recliner, an ensuite loo and a BED TABLE! And yes, that's a big deal. Last time, due to lack of available rooms, I was in a treatment room - bog-standard chair, no ensuite and no table, which was a pain!
This time I'm in absolute luxury!
Only bad news is that the hospital in general and the other side of this ward in particular is suffering from the Diarrhea and Vomiting bug which has been on the news the last couple of days, so I've got to try not to catch that one!
The ward Sister just said that if it wasn't for the evidence that I was having chemo, she would think that I was a fraud because I appear so fit and healthy, which was a nice thing to hear (unless she says it to everyone of course!)
First bag just finished, another 2-hour bag just fitted. Started earlier this cycle, which means I get to go home earlier tomorrow, but unfortunately means that I will have a bag change at about 5am in the morning and will be woken up by the now familiar "bing, bing, bong" of the iv machine when it runs out (anyone who's ever been on an iv drip will know what I mean!).
Anyway, enough rambling for today, be sure to check back tomorrow for the next enthralling installment of "live from ward 12" Ha ha!
Now let's see if this posting works! ...
Monday 15 December 2008
Monday 15th December 2008
Just got back from my blood test and all seems fine.
Nicole, my red blood cell count is 12.9, which is good apparently. Is that enough information or was there something else I was supposed to find out? (You nursey types - never satisfied! :)
Surgeon appointment is now next Tuesday morning (23rd Dec) at the Yorkshire Clinic in Bingley.
Otherwise nothing to report - off out for Italian at Bibi's in Leeds tonight, so more LIVE from the hospital tomorrow, in the next exciting installment of "the 24-hour IV marathon"!
Oh, and I see I've got Lance Armstrong scared - it seems he's coming out of retirement to go for his 8th Tour de France victory. He's obviously been reading my blog and is worried about the competition! :)
Nicole, my red blood cell count is 12.9, which is good apparently. Is that enough information or was there something else I was supposed to find out? (You nursey types - never satisfied! :)
Surgeon appointment is now next Tuesday morning (23rd Dec) at the Yorkshire Clinic in Bingley.
Otherwise nothing to report - off out for Italian at Bibi's in Leeds tonight, so more LIVE from the hospital tomorrow, in the next exciting installment of "the 24-hour IV marathon"!
Oh, and I see I've got Lance Armstrong scared - it seems he's coming out of retirement to go for his 8th Tour de France victory. He's obviously been reading my blog and is worried about the competition! :)
Sunday 14 December 2008
Sunday 14th December 2008
Very nice dinner last night!
In the restaurant there was a picture of a badger, which reminded me immediately of the funniest web clip I have ever seen. Every time I watch it I can't help but laugh, it's just so funny and I don't know why!
Thanks to Andy T for sending this to me a couple of years back, couldn't resist checking it out again last night and it had me laughing all over again! Now that I have an audience ready to spread the word Worldwide, here it is again (you need speakers on your PC) ...
www.badgerbadgerbadger.com
Truly marvelous!
On the cancer front (which I suppose is the whole point of this blog after all ...) I have another set of blood tests tomorrow to check whether I am in a fit state to have a second cycle of chemo, and assuming I am, I will be going into Huddersfield Royal Infirmary on Tuesday to start my second 24-hour IV marathon. 24 hours attached to an IV trolley, recording everything I drink and peeing into bottles so they can measure everything that comes out too to make sure my "fluid balance" is within the correct tolerances.
I finally got my appointment to meet the surgeon through yesterday, only to find that it is set for 7.20pm on Tuesday night, when I will be in the hospital! Typical! Hopefully they will be able to rearrange for another time this week.
Strange dream last night - all about this blog! I had a plan for an epic posting, with every single detail mapped out. Of course I woke up this morning and couldn't remember a thing about it, so you'll have to make do with this "less-than-epic" alternative! :)
Bye for now!
In the restaurant there was a picture of a badger, which reminded me immediately of the funniest web clip I have ever seen. Every time I watch it I can't help but laugh, it's just so funny and I don't know why!
Thanks to Andy T for sending this to me a couple of years back, couldn't resist checking it out again last night and it had me laughing all over again! Now that I have an audience ready to spread the word Worldwide, here it is again (you need speakers on your PC) ...
www.badgerbadgerbadger.com
Truly marvelous!
On the cancer front (which I suppose is the whole point of this blog after all ...) I have another set of blood tests tomorrow to check whether I am in a fit state to have a second cycle of chemo, and assuming I am, I will be going into Huddersfield Royal Infirmary on Tuesday to start my second 24-hour IV marathon. 24 hours attached to an IV trolley, recording everything I drink and peeing into bottles so they can measure everything that comes out too to make sure my "fluid balance" is within the correct tolerances.
I finally got my appointment to meet the surgeon through yesterday, only to find that it is set for 7.20pm on Tuesday night, when I will be in the hospital! Typical! Hopefully they will be able to rearrange for another time this week.
Strange dream last night - all about this blog! I had a plan for an epic posting, with every single detail mapped out. Of course I woke up this morning and couldn't remember a thing about it, so you'll have to make do with this "less-than-epic" alternative! :)
Bye for now!
Saturday 13 December 2008
Saturday 13th December 2008
45 today! 45 today!
Happy Birthday to me,
Happy Birthday to me,
Happy Birthday dear me-e,
Happy Birthday to me! :)
It struck me this morning that this is the 41st anniversary of my earliest memory - coming downstairs on my 4th birthday to my big present - a "Big Big Train". I remember it clearly, and it looked like this:
Although I'm not sure I remember that "The SECRET is in THE SWITCHES!". However, I remember loving that train to bits (probably literally!)
Today has been lovely so far - loads of best wishes via cards, emails, eCards and Facebook, and TWO CAKES! One, a very posh, gourmet Viennese chocolate cake, shipped all the way from Vienna (and already half-eaten!), and one "Colin the Caterpillar" cake from M&S! Not sure the latter will live up to the cake-ular quality of the Vienna masterpiece, but it will be equally enjoyable cos its called Colin! :)
Tonight - dinner at "The Old Bore at Rishworth" - a fabulous restaurant with the best steak and ale pie in the World, bar none, and my favourite beer (and Madonna's, apparently) - Timothy Taylor's Landlord. I've not been drinking for some time now (although I have no restrictions and can drink if I want) - I just haven't really fancied alcohol (now you KNOW that I'm ill!) - I think I will make an exception for a pint of the amber tonight. Will probably be completely pissed after one pint, but howay!
Gig last night was good - Barcrest Christmas party (the guys who make fruit machines). Not the most lively lot, but enjoyed it all the same - nice to get out for a change!
Happy Birthday to me,
Happy Birthday to me,
Happy Birthday dear me-e,
Happy Birthday to me! :)
It struck me this morning that this is the 41st anniversary of my earliest memory - coming downstairs on my 4th birthday to my big present - a "Big Big Train". I remember it clearly, and it looked like this:
Although I'm not sure I remember that "The SECRET is in THE SWITCHES!". However, I remember loving that train to bits (probably literally!)Today has been lovely so far - loads of best wishes via cards, emails, eCards and Facebook, and TWO CAKES! One, a very posh, gourmet Viennese chocolate cake, shipped all the way from Vienna (and already half-eaten!), and one "Colin the Caterpillar" cake from M&S! Not sure the latter will live up to the cake-ular quality of the Vienna masterpiece, but it will be equally enjoyable cos its called Colin! :)
Tonight - dinner at "The Old Bore at Rishworth" - a fabulous restaurant with the best steak and ale pie in the World, bar none, and my favourite beer (and Madonna's, apparently) - Timothy Taylor's Landlord. I've not been drinking for some time now (although I have no restrictions and can drink if I want) - I just haven't really fancied alcohol (now you KNOW that I'm ill!) - I think I will make an exception for a pint of the amber tonight. Will probably be completely pissed after one pint, but howay!
Gig last night was good - Barcrest Christmas party (the guys who make fruit machines). Not the most lively lot, but enjoyed it all the same - nice to get out for a change!
Friday 12 December 2008
Friday 12th December 2008
F-F-F-F-F-Friday!
Today I have been mostly trying to find out whether my employer will insure me to travel going forward. It seems that the third-party company they employ to provide travel insurance will not cover me for anything related to my now "pre-existing condition".
I was warned about this when it comes to personal travel insurance, but it seems it may be a problem for business travel too. I'm not too worried at this stage although I do have an engagement in Finland in January that I may still be able to cover if this can get sorted. I also want to ensure that I have a job to come back to once the surgery is over, and without adequate travel insurance I won't be able to do my current job, so I want to get it sorted as soon as possible. It's the things you don't expect which seem to be the hassle!
If Clare is reading this, thanks for the luvverly chocolate cake shipped over from Vienna - it's not going to last long, that's for certain!
It's my first evening foray into the outside world for a while tonight. We have a gig with the band in Ashton-under-Lyne (in a Masonic Lodge no less, so watch out for funny handshakes!). I unfortunately had to pull out of one last weekend as my throat was still an issue and I was at my most susceptible time for infection - luckily the gig went ahead with a stand-in, and went very well by all accounts, but I'm looking forward to playing again tonight - it's been a while now.
And remember - The early bird may get the worm, but the second mouse gets the cheese!
Today I have been mostly trying to find out whether my employer will insure me to travel going forward. It seems that the third-party company they employ to provide travel insurance will not cover me for anything related to my now "pre-existing condition".
I was warned about this when it comes to personal travel insurance, but it seems it may be a problem for business travel too. I'm not too worried at this stage although I do have an engagement in Finland in January that I may still be able to cover if this can get sorted. I also want to ensure that I have a job to come back to once the surgery is over, and without adequate travel insurance I won't be able to do my current job, so I want to get it sorted as soon as possible. It's the things you don't expect which seem to be the hassle!
If Clare is reading this, thanks for the luvverly chocolate cake shipped over from Vienna - it's not going to last long, that's for certain!
It's my first evening foray into the outside world for a while tonight. We have a gig with the band in Ashton-under-Lyne (in a Masonic Lodge no less, so watch out for funny handshakes!). I unfortunately had to pull out of one last weekend as my throat was still an issue and I was at my most susceptible time for infection - luckily the gig went ahead with a stand-in, and went very well by all accounts, but I'm looking forward to playing again tonight - it's been a while now.
And remember - The early bird may get the worm, but the second mouse gets the cheese!
Thursday 11 December 2008
Thursday 11th December 2008
Routine weekly visit to the hospital today for a blood test to determine the level of Warfarin I should be taking. It's been upped to 5mg from 4mg.
Also picked up 4 weeks supply of Fluconazole (the anti-fungal drug which sorted my mouth out earlier this week).
My Oncologist was there and she told me that despite the mouth ulcers I suffered, she didn't want to reduce my chemo dose, so she warned me that it is likely that I will suffer the same side effect in the next cycle as I am on a relatively high dose of 5FU administered in a short time. However, this time they are expecting the thrush so they will throw all the oral drugs at me they can to minimise the impact, so hopefully no blended turkey on Christmas Day! If the worst comes to the worst, we'll postpone and have Christmas dinner in January. At least if that happens, we'll be able to pop to the shops if we've forgotten something!
I now have my appointment for my repeat CT scan on the 7th Jan, but I won't get the results from that for about a week after. I'm now waiting for an appointment to meet the surgeons who will do my operation in February - I'm expecting that to come through in the next day or so.
Nothing much else to report - still feeling good and a bit smiley, and I'm not even on the morphine any more! :)
Also picked up 4 weeks supply of Fluconazole (the anti-fungal drug which sorted my mouth out earlier this week).
My Oncologist was there and she told me that despite the mouth ulcers I suffered, she didn't want to reduce my chemo dose, so she warned me that it is likely that I will suffer the same side effect in the next cycle as I am on a relatively high dose of 5FU administered in a short time. However, this time they are expecting the thrush so they will throw all the oral drugs at me they can to minimise the impact, so hopefully no blended turkey on Christmas Day! If the worst comes to the worst, we'll postpone and have Christmas dinner in January. At least if that happens, we'll be able to pop to the shops if we've forgotten something!
I now have my appointment for my repeat CT scan on the 7th Jan, but I won't get the results from that for about a week after. I'm now waiting for an appointment to meet the surgeons who will do my operation in February - I'm expecting that to come through in the next day or so.
Nothing much else to report - still feeling good and a bit smiley, and I'm not even on the morphine any more! :)
Wednesday 10 December 2008
Wednesday 10th December 2008
Hi All,
Had a "smiley" day today for some reason - walked up into town and couldn't help smiling at people - freaked them out no end! :)
I guess its partly to do with the great feeling of being able to enjoy food again!
I've had a few nice comments recently, and to show that this is a genuinely interactive blog, I will now address my concerned, informed and inquisitive following ... ha, ha, delusions of grandeur slipping through there for a moment :)
1) Yes, vegetables that resemble male genitalia do make adolescent boys (and even some men) laugh. Thanks Sue, I resolve to only eat vegetables shaped like male genitalia from now on. :)
2) No, Anonymous, I don't have any diet restrictions - "eat whatever you like" I have been told. I'm assuming that is NHS speak for "eat a healthy, balanced diet", but I took it to mean "go on, have a McDonalds, you know you want to!" when I was in town today!
3) Kaz, although it is tempting to skip a few days on the blog, I see it like going to the gym. Missing a day is the start of the slippery slope. First it'll just be one day, soon the blog will be a distant memory! No seriously, I enjoy it, and it's no hardship doing at least a short message once a day. When I'm in hospital I'll have to do it from my handheld which might be more of a challenge, but we'll give it a go!
That's all for today,
Keep Smiling :)
Had a "smiley" day today for some reason - walked up into town and couldn't help smiling at people - freaked them out no end! :)
I guess its partly to do with the great feeling of being able to enjoy food again!
I've had a few nice comments recently, and to show that this is a genuinely interactive blog, I will now address my concerned, informed and inquisitive following ... ha, ha, delusions of grandeur slipping through there for a moment :)
1) Yes, vegetables that resemble male genitalia do make adolescent boys (and even some men) laugh. Thanks Sue, I resolve to only eat vegetables shaped like male genitalia from now on. :)
2) No, Anonymous, I don't have any diet restrictions - "eat whatever you like" I have been told. I'm assuming that is NHS speak for "eat a healthy, balanced diet", but I took it to mean "go on, have a McDonalds, you know you want to!" when I was in town today!
3) Kaz, although it is tempting to skip a few days on the blog, I see it like going to the gym. Missing a day is the start of the slippery slope. First it'll just be one day, soon the blog will be a distant memory! No seriously, I enjoy it, and it's no hardship doing at least a short message once a day. When I'm in hospital I'll have to do it from my handheld which might be more of a challenge, but we'll give it a go!
That's all for today,
Keep Smiling :)
Tuesday 9 December 2008
Tuesday 9th December 2008
Getting a bit boring I'm afraid - all is still well.
About time something else went wrong otherwise this blog is going to get very dull! :)
Ate a banana today without any consequences, so my mouth pain wasn't down to that either - so none the wiser really.
Another short one today - I'll try harder tomorrow!
About time something else went wrong otherwise this blog is going to get very dull! :)
Ate a banana today without any consequences, so my mouth pain wasn't down to that either - so none the wiser really.
Another short one today - I'll try harder tomorrow!
Monday 8 December 2008
Monday 8th December 2008
Ulcers almost gone now, so I'm much happier.
Next blood test is Wednesday or Thursday so I will try and get an extension of the Fluconazole drug to help prevent this happening again during the next cycle. If it were to happen again it would probably co-incide with Christmas, and I don't really want to be eating my Chrimbo dinner out of a blender!
Talking of Christmas Dinner, and my ongoing poor relationship with the food genus "vegetables", I came across this quote today:
An onion can make people cry, but there has never been a vegetable invented to make them laugh. -- Will Rogers
How True! And thanks JB for that one, I will remember it as I battle to find a vegetable that doesn't taste of the earth it was pulled out of! :)
Next blood test is Wednesday or Thursday so I will try and get an extension of the Fluconazole drug to help prevent this happening again during the next cycle. If it were to happen again it would probably co-incide with Christmas, and I don't really want to be eating my Chrimbo dinner out of a blender!
Talking of Christmas Dinner, and my ongoing poor relationship with the food genus "vegetables", I came across this quote today:
An onion can make people cry, but there has never been a vegetable invented to make them laugh. -- Will Rogers
How True! And thanks JB for that one, I will remember it as I battle to find a vegetable that doesn't taste of the earth it was pulled out of! :)
Sunday 7 December 2008
Sunday 7th December 2008
Hurrah! Another good day!
Some symptoms still, but definitely much better and I've been able not just to eat, but to actually enjoy my food for the first time in a couple of days!
For the curious ones, yes I did try one more gel treatment today and suffered no pain at all, so I guess it was just a co-incidence and I'm not the first person in history to have a side-effect. I won't be on the front page of the BMJ now :(
Short one today because its bedtime ...
Some symptoms still, but definitely much better and I've been able not just to eat, but to actually enjoy my food for the first time in a couple of days!
For the curious ones, yes I did try one more gel treatment today and suffered no pain at all, so I guess it was just a co-incidence and I'm not the first person in history to have a side-effect. I won't be on the front page of the BMJ now :(
Short one today because its bedtime ...
Saturday 6 December 2008
Saturday 6th December
Much, much better today.
Haven't needed the OraMorph today at all.
Strangely enough, yesterday's bouts of severe pain - in the morning and again in the late afternoon seemed to co-incide with about 15 minutes after rinsing with the GelClair solution which I was given to help the problem in the first place.
This is a sachet of gel which is mixed with a little water then rinsed around the mouth. It is designed to coat the ulcers and provide pain relief. The instructions which come with it say that there are no known side-effects or interactions with other drugs, so this may just be a co-incidence, but I stopped using it today and have been relying solely on the mouthwash I was given yesterday, and today has been absolutely fine.
I still have the ulcers, but they appear to be reducing and are causing much less discomfort whilst eating than yesterday and none of the searing pain.
I'm tempted to try one more GelClair to try and prove my theory, but if I'm proved right, all I'm doing is putting myself through uneccesary pain, so maybe I can live without knowing that I might be the first person in the World to experience side-effects with GelClair.
Or should I do it?
In the name of Medical Research?
Votes in the comments section please! :)
Otherwise, a thoroughly GOOD DAY all around. Let's hope I can beat the pogo stick effect and have another good one tomorrow!
Haven't needed the OraMorph today at all.
Strangely enough, yesterday's bouts of severe pain - in the morning and again in the late afternoon seemed to co-incide with about 15 minutes after rinsing with the GelClair solution which I was given to help the problem in the first place.
This is a sachet of gel which is mixed with a little water then rinsed around the mouth. It is designed to coat the ulcers and provide pain relief. The instructions which come with it say that there are no known side-effects or interactions with other drugs, so this may just be a co-incidence, but I stopped using it today and have been relying solely on the mouthwash I was given yesterday, and today has been absolutely fine.
I still have the ulcers, but they appear to be reducing and are causing much less discomfort whilst eating than yesterday and none of the searing pain.
I'm tempted to try one more GelClair to try and prove my theory, but if I'm proved right, all I'm doing is putting myself through uneccesary pain, so maybe I can live without knowing that I might be the first person in the World to experience side-effects with GelClair.
Or should I do it?
In the name of Medical Research?
Votes in the comments section please! :)
Otherwise, a thoroughly GOOD DAY all around. Let's hope I can beat the pogo stick effect and have another good one tomorrow!
Friday 5 December 2008
4 Weeks since Diagnosis
I realised today that it was exactly 4 weeks since I was told that I had cancer, and I thought it would be a good moment to reflect on how my life has changed in this relatively short period.
If you compare what I would have expected to be doing during this last month and what I have ended up doing, they couldn't be more different. However, everything I have been doing has seemed almost "normal". Having hardly been near a hospital most of my life, I'm suddenly there almost every other day, but it just seems like it's my life now. It's very odd actually - the closest I can equate to it is moving to a new area or a new job. Everything changes, but you just get on with it and learn as you go. It's like an adventure!
Am I a different person? I don't think so - maybe I've got a different goal all of the sudden ("beating cancer" wasn't on my list for 2008 I have to admit!) - but striving to reach a goal is a natural thing, whatever the goal is. In fact, I've already said to a few people that maybe I was struggling to think of any particular goal in my life before this and now this has bizarrely given me something worth focusing on!
Do I expect my life to change long-term? Maybe. Even if all goes to plan, I'll still probably have to eat differently (less food, more often), but who can say. There's a long way to go yet! Once I've run the marathons and won the Tour de France I can see myself going back pretty much to normal.
I've learned that cancer really does affect every one of us in some way or another. Nearly everyone I know has had a relative or friend who has had a brush with some form of the disease. Shockingly, my visits to the hospital show that although I am young, I am not the youngest - today we met a lady in her 30's married with a daughter just starting her first cycle of chemo (not sure what cancer she had though). I have also learned that many people come through it to live normal lives, and I've heard several inspirational stories.
I've learned that there are many different types of the illness and even more different types of treatment, including many different alternative therapies, so there are always options.
I've learned that the path through treatment is different for everybody and everybody suffers different side-effects.
I've learned that in my part of the world (and I'm sure elsewhere too) there are some wonderfully caring nurses and doctors always ready to drop everything and help you manage that next unexpected side-effect to ensure you are comfortable. If you are reading this. Thank-you.
I've learned that I have some wonderful friends who have said some wonderfully supportive things and I thank you all.
Finally, I've learned that morphine makes me go all slushy and sentimental so I'm going to stop there ...
If you compare what I would have expected to be doing during this last month and what I have ended up doing, they couldn't be more different. However, everything I have been doing has seemed almost "normal". Having hardly been near a hospital most of my life, I'm suddenly there almost every other day, but it just seems like it's my life now. It's very odd actually - the closest I can equate to it is moving to a new area or a new job. Everything changes, but you just get on with it and learn as you go. It's like an adventure!
Am I a different person? I don't think so - maybe I've got a different goal all of the sudden ("beating cancer" wasn't on my list for 2008 I have to admit!) - but striving to reach a goal is a natural thing, whatever the goal is. In fact, I've already said to a few people that maybe I was struggling to think of any particular goal in my life before this and now this has bizarrely given me something worth focusing on!
Do I expect my life to change long-term? Maybe. Even if all goes to plan, I'll still probably have to eat differently (less food, more often), but who can say. There's a long way to go yet! Once I've run the marathons and won the Tour de France I can see myself going back pretty much to normal.
I've learned that cancer really does affect every one of us in some way or another. Nearly everyone I know has had a relative or friend who has had a brush with some form of the disease. Shockingly, my visits to the hospital show that although I am young, I am not the youngest - today we met a lady in her 30's married with a daughter just starting her first cycle of chemo (not sure what cancer she had though). I have also learned that many people come through it to live normal lives, and I've heard several inspirational stories.
I've learned that there are many different types of the illness and even more different types of treatment, including many different alternative therapies, so there are always options.
I've learned that the path through treatment is different for everybody and everybody suffers different side-effects.
I've learned that in my part of the world (and I'm sure elsewhere too) there are some wonderfully caring nurses and doctors always ready to drop everything and help you manage that next unexpected side-effect to ensure you are comfortable. If you are reading this. Thank-you.
I've learned that I have some wonderful friends who have said some wonderfully supportive things and I thank you all.
Finally, I've learned that morphine makes me go all slushy and sentimental so I'm going to stop there ...
Friday 5th December 2008
Mouth Saga day 3.
Well, the day started ok, much the same as yesterday - a good night's sleep and a tasty breakfast. However, I decided to eat a banana about 10am, and it tasted like it was made of chilli. I don't know if this was actually a reaction to the banana, or a coincidence, but either way the roof of my mouth flared up bright red and I had agonising, stinging pain all morning, actually bringing tears to my eyes at several points - felt like I was sucking a red-hot golf ball. I take back everything I said yesterday about pain, I've never experienced anything like that before - really, really horrible. I kept expecting it to die down (like when you put TCP on a cut or something - sharp stinging pain which subsides after a minute or so) but it just kept on, constant for 4 hours. In the end I cracked, and phoned the hospital yet again.
Of course it finally subsided on the way to the hospital as you'd expect, so there's me feeling like fraud, taking up the nurses time ... however, I don't want to have to go through that pain again, so I got yet another stash of potions, including a mouthwash with a mild anaesthetic and some "Oramorph" - morphine based pain killer - which is a hospital "controlled drug" (extra forms required for prescription). Nice!
Please forgive me over the next couple of days if my posts make references to purple elephants, "the bees, the bees", or any other slightly out-of-the-ordinary things. It's the drugs I tells ya!
Spag Bol for tea - yippee!!
See you tomorrow!
Well, the day started ok, much the same as yesterday - a good night's sleep and a tasty breakfast. However, I decided to eat a banana about 10am, and it tasted like it was made of chilli. I don't know if this was actually a reaction to the banana, or a coincidence, but either way the roof of my mouth flared up bright red and I had agonising, stinging pain all morning, actually bringing tears to my eyes at several points - felt like I was sucking a red-hot golf ball. I take back everything I said yesterday about pain, I've never experienced anything like that before - really, really horrible. I kept expecting it to die down (like when you put TCP on a cut or something - sharp stinging pain which subsides after a minute or so) but it just kept on, constant for 4 hours. In the end I cracked, and phoned the hospital yet again.
Of course it finally subsided on the way to the hospital as you'd expect, so there's me feeling like fraud, taking up the nurses time ... however, I don't want to have to go through that pain again, so I got yet another stash of potions, including a mouthwash with a mild anaesthetic and some "Oramorph" - morphine based pain killer - which is a hospital "controlled drug" (extra forms required for prescription). Nice!
Please forgive me over the next couple of days if my posts make references to purple elephants, "the bees, the bees", or any other slightly out-of-the-ordinary things. It's the drugs I tells ya!
Spag Bol for tea - yippee!!
See you tomorrow!
Thursday 4 December 2008
Thursday 4th December 2008
Oi! Where's our snow???
Well that's got to be the biggest anti-climax ever! A couple of flakes at 6am and it's done nothing but rain ever since! It seems that everywhere around - Bradford, Huddersfield, the M62 etc - had a nightmare this morning, but we just had rain! Can't help but feel cheated. If there is going to be big snow, then I WANT SOME!
Bit sore in the mouth this morning, but the gels, drugs and potions seem to be starting to work their magic and I'm doing fine at the moment. It certainly does seem to be a bit of a roll-a-coaster ride this chemo experience though. I expected a steady decline over the cycle, but I'm up and down like an up and down thing on a pogo stick!
All things considered, it's been good to me so far though. In my life I've been much more ill in the past than I have felt at any point these last couple of weeks - when laid out for 10 days with flu for example (and I don't mean Manflu either I'll have you know!), and I've certainly experienced periods of greater pain - (trapped nerve in the neck a couple of years ago). Can't say I'd recommend chemo to anyone for fun, but I think Cancer Research has come a long way - maybe not with finding the ultimate cure, but in finding better therapies and better managing the side-effects of existing ones.
Let's just hope that it's actually doing something in there - no point having an easy ride if it isn't actually working of course!
Was just reminded of one of my favourite jokes:
Q. What's the difference between a buffalo and a bison?
A. You can't wash your hands in a buffalo
... always liked that one (tittering to myself like the nutter on the bus)
Well that's got to be the biggest anti-climax ever! A couple of flakes at 6am and it's done nothing but rain ever since! It seems that everywhere around - Bradford, Huddersfield, the M62 etc - had a nightmare this morning, but we just had rain! Can't help but feel cheated. If there is going to be big snow, then I WANT SOME!
Bit sore in the mouth this morning, but the gels, drugs and potions seem to be starting to work their magic and I'm doing fine at the moment. It certainly does seem to be a bit of a roll-a-coaster ride this chemo experience though. I expected a steady decline over the cycle, but I'm up and down like an up and down thing on a pogo stick!
All things considered, it's been good to me so far though. In my life I've been much more ill in the past than I have felt at any point these last couple of weeks - when laid out for 10 days with flu for example (and I don't mean Manflu either I'll have you know!), and I've certainly experienced periods of greater pain - (trapped nerve in the neck a couple of years ago). Can't say I'd recommend chemo to anyone for fun, but I think Cancer Research has come a long way - maybe not with finding the ultimate cure, but in finding better therapies and better managing the side-effects of existing ones.
Let's just hope that it's actually doing something in there - no point having an easy ride if it isn't actually working of course!
Was just reminded of one of my favourite jokes:
Q. What's the difference between a buffalo and a bison?
A. You can't wash your hands in a buffalo
... always liked that one (tittering to myself like the nutter on the bus)
Wednesday 3 December 2008
Wednesday 3rd December 2008
Ow! Ow! Ow! A bit of a riot kicked off in my mouth last night when my tongue and cheeks broke out in nasty ulcers. Surprisingly I slept fine, but this morning I could hardly talk as my tongue was swollen and sore.
Back to the hospital we go (no more snow this morning luckily), and the doc told me I had thrush (don't ask). The good news is that I now have two more drugs in my arsenal - something called Fluconazole and a 3-times daily gel mouthwash called Gelclair which are starting to reduce the discomfort. I will hopefully be on these for the duration now so that this does not reoccur during the next cycle.
Good news that this is now recognised as a side-effect of the chemo and not any kind of infection which would be more worrying at this stage.
Still coping ok and keeping chin up, even if I do sound like Sly Stallone when I speak!
Due for a snow hammering overnight, but as they did my scheduled blood tests today whilst we were there rather than tomorrow as planned, that should work out ok and we can safely hibernate for the day tomorrow I think (no Minder on tomorrow though, sadly ...)
Back to the hospital we go (no more snow this morning luckily), and the doc told me I had thrush (don't ask). The good news is that I now have two more drugs in my arsenal - something called Fluconazole and a 3-times daily gel mouthwash called Gelclair which are starting to reduce the discomfort. I will hopefully be on these for the duration now so that this does not reoccur during the next cycle.
Good news that this is now recognised as a side-effect of the chemo and not any kind of infection which would be more worrying at this stage.
Still coping ok and keeping chin up, even if I do sound like Sly Stallone when I speak!
Due for a snow hammering overnight, but as they did my scheduled blood tests today whilst we were there rather than tomorrow as planned, that should work out ok and we can safely hibernate for the day tomorrow I think (no Minder on tomorrow though, sadly ...)
Tuesday 2 December 2008
Thought For The Day
If you can start the day without caffeine
If you can get going without pep pills
If you can always be cheerful ignoring aches and pains
If you can resist complaining and boring people with your troubles
If you can eat the same food every day and be grateful for it
If you can understand when your loved ones are too busy to give you any time
If you can overlook it when those you love take it out on you when through no fault of yours something goes wrong
If you can take criticism and blame without resentment
If you can ignore a friend's limited education and never correct him
If you can resist treating a rich friend better than a poor friend
If you can face the world without lies and deceit
If you can conquer tension without medical help
If you can relax without liquor
If you can sleep without the aid of drugs
.....then you are probably the family dog!
If you can get going without pep pills
If you can always be cheerful ignoring aches and pains
If you can resist complaining and boring people with your troubles
If you can eat the same food every day and be grateful for it
If you can understand when your loved ones are too busy to give you any time
If you can overlook it when those you love take it out on you when through no fault of yours something goes wrong
If you can take criticism and blame without resentment
If you can ignore a friend's limited education and never correct him
If you can resist treating a rich friend better than a poor friend
If you can face the world without lies and deceit
If you can conquer tension without medical help
If you can relax without liquor
If you can sleep without the aid of drugs
.....then you are probably the family dog!
Tuesday 2nd December 2008
Blimey! Winter has come with a bang today! For all of you based in the softie South (or in warmer countries altogether), it's been full on snowing most of the day.
I still have the sore throat, but feel much better today "around the sides" so it's much easier to ignore. In fact, I have had two guys here all day today putting up a fence in my garden in the full-on snow, so hat's off to them - I've got absolutely nothing to moan about! (Fence looks very nice, by the way!)
No other developments of any kind today - just planning to turn the heating up and go NOWHERE for a while.
For those of you who don't know, we live in a cul-de-sac at the bottom of a very steep hill (only way out), so getting snowed in is always a possibility and there are usually a few days a year when we can't easily get out. I guess in an emergency there is a path out the back and we could walk to the main rd if necessary so I'm not concerned, but talk about bad timing for the heaven's to open!
On another note, a few people have been struggling to sign up to the blog. I think it might be to do with pop-up blockers, as the "registration" page is a pop-up. try switching yours off temporarily if you are affected.
I still have the sore throat, but feel much better today "around the sides" so it's much easier to ignore. In fact, I have had two guys here all day today putting up a fence in my garden in the full-on snow, so hat's off to them - I've got absolutely nothing to moan about! (Fence looks very nice, by the way!)
No other developments of any kind today - just planning to turn the heating up and go NOWHERE for a while.
For those of you who don't know, we live in a cul-de-sac at the bottom of a very steep hill (only way out), so getting snowed in is always a possibility and there are usually a few days a year when we can't easily get out. I guess in an emergency there is a path out the back and we could walk to the main rd if necessary so I'm not concerned, but talk about bad timing for the heaven's to open!
On another note, a few people have been struggling to sign up to the blog. I think it might be to do with pop-up blockers, as the "registration" page is a pop-up. try switching yours off temporarily if you are affected.
Monday 1 December 2008
Monday 1st December 2008
Hmmm... not enjoying today as much! Throat has been bad, and I've spent several hours at the hospital getting checked out (or "waiting around to get checked out" as is the norm!).
No fever, temperature or other symptoms, so nothing to worry about yet, but it's just making me feel like I'm ill, which is the first time I can say that this is the case. I've been a bit lazy today to see if resting helps (I've just had an hour's kip), but it hasn't really.
It snowed here briefly when I woke up today, and it's been bitterly cold all day. I guess at this time of year I know I'm not the only person in the World suffering a sore throat today - get well soon everybody!!
On a side note, when Vanda was ill last year she got addicted to Midsomer Murders on daytime TV - today I seem to have taken an unhealthy interest in episodes of "Minder" - old-style, ringing telephones, Ford Capri's, lot's of people smoking on television, and remarkably, not a mobile phone in sight! Ha ha!
No fever, temperature or other symptoms, so nothing to worry about yet, but it's just making me feel like I'm ill, which is the first time I can say that this is the case. I've been a bit lazy today to see if resting helps (I've just had an hour's kip), but it hasn't really.
It snowed here briefly when I woke up today, and it's been bitterly cold all day. I guess at this time of year I know I'm not the only person in the World suffering a sore throat today - get well soon everybody!!
On a side note, when Vanda was ill last year she got addicted to Midsomer Murders on daytime TV - today I seem to have taken an unhealthy interest in episodes of "Minder" - old-style, ringing telephones, Ford Capri's, lot's of people smoking on television, and remarkably, not a mobile phone in sight! Ha ha!
Sunday 30 November 2008
Sunday 30th November 2008
I've been to the hospital today and had my 5FU bottle disconnected, so although I still have a catheter line in my arm it's bandaged up and not connected to anything now until the next cycle on the 16th - I kind of miss my little companion!
Not a bad day today, but maybe some indication that this won't necessarily be plain sailing all the way - I've had a bit of a sore throat all day and they want me to keep an eye on that - I have to take my temperature regularly, as I am now moving into the middle week of the cycle when my susceptibility to infection is highest. Hopefully it'll be gone tomorrow - gargling furiously with TCP at the moment!
Not much else to report today - off into the loft to get the Crimbo tree now! :)
Not a bad day today, but maybe some indication that this won't necessarily be plain sailing all the way - I've had a bit of a sore throat all day and they want me to keep an eye on that - I have to take my temperature regularly, as I am now moving into the middle week of the cycle when my susceptibility to infection is highest. Hopefully it'll be gone tomorrow - gargling furiously with TCP at the moment!
Not much else to report today - off into the loft to get the Crimbo tree now! :)
Saturday 29 November 2008
Saturday 29th November 2008
Hi folks,
Again, thanks for the continued messages of goodwill and it was great chatting to some of you on the phone last night. Your support is very welcome, and I'm hugely appreciative! Vanda, you know I'm especially grateful to you for everything.
Only change today is that I woke up at 5am this morning for a wee and felt quite nauseaus (I must learn to spell that word properly as I seem to be using it a lot! :)). I don't have a specific drug for overnight, I take pills at 9am, 3pm, 6pm and 9pm, so the overnight gap is the longest and I should expect some intervals of nausea. Luckily I do have one of the drugs which is for an "as needed" basis as opposed to the regular daily dose, and one of those this morning put me right.
Over the years of my life, as most of you will know, I've not been a stranger to nausea - unfortunately, I used to have the fun of the night out before though! :)
Anyway, thanks again for "dipping in" to my blog, and I hope I'm managing to get over that I'm well and this isn't getting me down - and I'm being as honest as I can - I'm not trying to put a brave face on things. I plan to post when I'm feeling crap as well, but hopefully those posts will be few and far between!
By the way, I'm getting a bit worried. I'm reading lots of inspirational stories of people surviving cancer and going on to run marathons and win the Tour de France etc - Is that what I've got to do then??? Can't I just survive it then have a nice quiet life in front of the telly? :)
Thanks,
Colin.
Again, thanks for the continued messages of goodwill and it was great chatting to some of you on the phone last night. Your support is very welcome, and I'm hugely appreciative! Vanda, you know I'm especially grateful to you for everything.
Only change today is that I woke up at 5am this morning for a wee and felt quite nauseaus (I must learn to spell that word properly as I seem to be using it a lot! :)). I don't have a specific drug for overnight, I take pills at 9am, 3pm, 6pm and 9pm, so the overnight gap is the longest and I should expect some intervals of nausea. Luckily I do have one of the drugs which is for an "as needed" basis as opposed to the regular daily dose, and one of those this morning put me right.
Over the years of my life, as most of you will know, I've not been a stranger to nausea - unfortunately, I used to have the fun of the night out before though! :)
Anyway, thanks again for "dipping in" to my blog, and I hope I'm managing to get over that I'm well and this isn't getting me down - and I'm being as honest as I can - I'm not trying to put a brave face on things. I plan to post when I'm feeling crap as well, but hopefully those posts will be few and far between!
By the way, I'm getting a bit worried. I'm reading lots of inspirational stories of people surviving cancer and going on to run marathons and win the Tour de France etc - Is that what I've got to do then??? Can't I just survive it then have a nice quiet life in front of the telly? :)
Thanks,
Colin.
The Drugs - for you medical types
Some of you have asked about the chemo and side-affect drugs, so here's what I know:
Chemo drug 1: Cisplatin
This is a heavy metal compound containing platinum http://en.wikipedia.org/wiki/Cisplatin
Chemo drug 2: 5 Fluorouracil or "5FU"
http://en.wikipedia.org/wiki/Fluorouracil
The combination of these drugs is a common one for the treatment of many cancers and they have been used for many years.
There are some more modern alternatives, but these tend to be administered as part of clinical trials. There are two reasons that I am not involved in these - firstly, many clinical trials have to be conducted "double blind", which means that neither the patient or the oncologist are aware if they are on the drug or the placebo - which is not a good thing when pursuing a curative strategy - you really want to know that you are on something that is proven to work!
Secondly, the patient needs to be in a "known state", so the uncertainty of that one small nodule I have could throw doubt on the results of the trial.
Neither of these are of concern to my oncologist, she wants me to be on the combination above because she feels that it is the most appropriate for the treatment under the circumstances, and I'm happy to be on a proven treatment path which is not proving too arduous at the moment.
Side Effect Drugs:
The main side effects with the above drugs are nausea-related. Unfortunately for some of you, I very probably won't be losing my hair on this occasion, so no mickey-taking opportunities there! :)
1. Pyridoxine
http://en.wikipedia.org/wiki/Pyridoxine This is a vitimin B6 compound to help with the blood balance (white vs red blood cells) during the treatment
2. Metoclopramide
http://en.wikipedia.org/wiki/Metoclopramide This is one of the antiemetics (anti-nausea). It's been around for some time but appears to be effective. The Wiki entry suggests that it has been superceded by Ondansetron, which I also have.
3. Ondansetron
http://en.wikipedia.org/wiki/Ondansetron I have some of these to use as "top ups". It's not part of my daily regime, but I can take one in between regular "pill stops" if I get nausea symptoms. I took one at 5am this morning for example when I woke up for a wee and felt nauseaus, and it sorted me out nicely.
4. Dexamethasone
http://en.wikipedia.org/wiki/Dexamethasone Although this is a steroid, it is used to augment the antiemetic treatment in combination with the other drugs above. I am on a "reducing" dose of this, so steadily phased out during the period of the chemo cycle
5. Omeprazole
http://en.wikipedia.org/wiki/Omeprazole This is a Proton Pump Inhibitor, which basically switches off the acid production in the stomach, preventing any further acid damage.
6. Warfarin
http://en.wikipedia.org/wiki/Warfarin Many of you will be familiar with this drug. It is an anti-clotting drug to minimise the likelihood of blood clots forming. As my PICC line is a small tube inserted quite far into a vein, they need to be sure that clots do not form at the end of the tube, so the Warfarin is to help prevent this.
7. Emend
http://en.wikipedia.org/wiki/Aprepitant This is one of the newer drugs which wouldn't have been available to people like my mother who suffered badly with nausea during chemo. I only had it for three days at the start of the treatment because it is aimed particularly at the initial effects of the Cisplatin dosage
Chemo drug 1: Cisplatin
This is a heavy metal compound containing platinum http://en.wikipedia.org/wiki/Cisplatin
Chemo drug 2: 5 Fluorouracil or "5FU"
http://en.wikipedia.org/wiki/Fluorouracil
The combination of these drugs is a common one for the treatment of many cancers and they have been used for many years.
There are some more modern alternatives, but these tend to be administered as part of clinical trials. There are two reasons that I am not involved in these - firstly, many clinical trials have to be conducted "double blind", which means that neither the patient or the oncologist are aware if they are on the drug or the placebo - which is not a good thing when pursuing a curative strategy - you really want to know that you are on something that is proven to work!
Secondly, the patient needs to be in a "known state", so the uncertainty of that one small nodule I have could throw doubt on the results of the trial.
Neither of these are of concern to my oncologist, she wants me to be on the combination above because she feels that it is the most appropriate for the treatment under the circumstances, and I'm happy to be on a proven treatment path which is not proving too arduous at the moment.
Side Effect Drugs:
The main side effects with the above drugs are nausea-related. Unfortunately for some of you, I very probably won't be losing my hair on this occasion, so no mickey-taking opportunities there! :)
1. Pyridoxine
http://en.wikipedia.org/wiki/Pyridoxine This is a vitimin B6 compound to help with the blood balance (white vs red blood cells) during the treatment
2. Metoclopramide
http://en.wikipedia.org/wiki/Metoclopramide This is one of the antiemetics (anti-nausea). It's been around for some time but appears to be effective. The Wiki entry suggests that it has been superceded by Ondansetron, which I also have.
3. Ondansetron
http://en.wikipedia.org/wiki/Ondansetron I have some of these to use as "top ups". It's not part of my daily regime, but I can take one in between regular "pill stops" if I get nausea symptoms. I took one at 5am this morning for example when I woke up for a wee and felt nauseaus, and it sorted me out nicely.
4. Dexamethasone
http://en.wikipedia.org/wiki/Dexamethasone Although this is a steroid, it is used to augment the antiemetic treatment in combination with the other drugs above. I am on a "reducing" dose of this, so steadily phased out during the period of the chemo cycle
5. Omeprazole
http://en.wikipedia.org/wiki/Omeprazole This is a Proton Pump Inhibitor, which basically switches off the acid production in the stomach, preventing any further acid damage.
6. Warfarin
http://en.wikipedia.org/wiki/Warfarin Many of you will be familiar with this drug. It is an anti-clotting drug to minimise the likelihood of blood clots forming. As my PICC line is a small tube inserted quite far into a vein, they need to be sure that clots do not form at the end of the tube, so the Warfarin is to help prevent this.
7. Emend
http://en.wikipedia.org/wiki/Aprepitant This is one of the newer drugs which wouldn't have been available to people like my mother who suffered badly with nausea during chemo. I only had it for three days at the start of the treatment because it is aimed particularly at the initial effects of the Cisplatin dosage
Friday 28 November 2008
Friday 28th November 2008
Hi All,
First of all, I sent out some messages yesterday to tell more people about the situation, and I have been overwhelmed by the positive support and lovely messages I have received. Thank-you very much, it means a lot to me!
No real change today - my head seems to be about half a second behind my body - probably to do with the pharmacy of drugs swimming about inside - but still no nausea or anything unpleasent yet, so still going strong.
Worst bit of this at the moment is that they have told me that due to the poisons going through me, I have to flush the toilet twice each time I go, which means that I'm spending most of my days standing in loos waiting for cisterns to fill up! They don't mention that in the cancer literature!! :)
First of all, I sent out some messages yesterday to tell more people about the situation, and I have been overwhelmed by the positive support and lovely messages I have received. Thank-you very much, it means a lot to me!
No real change today - my head seems to be about half a second behind my body - probably to do with the pharmacy of drugs swimming about inside - but still no nausea or anything unpleasent yet, so still going strong.
Worst bit of this at the moment is that they have told me that due to the poisons going through me, I have to flush the toilet twice each time I go, which means that I'm spending most of my days standing in loos waiting for cisterns to fill up! They don't mention that in the cancer literature!! :)
Thursday 27 November 2008
Thursday 27th November 2008
Slept very well, and no problems with my chemo bottle. Woke up a little nauseous, but I have six different drugs at the moment, 4 of which are antiemetics (anti nausea) which are sorting me out nicely. Just had to go for a blood test to check what level of Warferin I need (to prevent clotting of the PICC line), but all in all I feel absolutely fine today!
I guess things will start to accumulate, and next week may be worse as my blood counts drop and I become susceptible to infection, but if it stays like this it will be a breeze - I just hope it's working! :)
I guess things will start to accumulate, and next week may be worse as my blood counts drop and I become susceptible to infection, but if it stays like this it will be a breeze - I just hope it's working! :)
Timeline since diagnosis
This is how things have progressed since just before my diagnosis. I'll put the technical detail in another post for those who want to know more about the details.
2 or 3 months ago - symptoms
I first noticed something was a bit odd, when I found that sometimes I was having a difficulty swallowing certain foods. I'd get a few painful hiccups and a trapped wind sensation before things would settle down to normal again. I visited my GP and ended up being referred to a Gastro-enterologist for further checks
Friday 7th November 2008 - endoscope & diagnosis
I went to Elland hospital for an endoscopy - a camera down the throat - expecting a diagnosis of acid reflux or something like that. Unfortunately my consultant told me that I had cancer of the oesophegus - a bit of a shock, but as he was quite certain, you just have to take it in your stride I suppose. I know you are supposed to pass through five stages - denial, anger, bargaining, depression and acceptance, but I genuinely feel that I jumped immediately to acceptance. I asked if the cancer was treatable and was told that it was. I realise now that I asked the wrong question - I should have asked if it was curable, but I would probably have been told at the time that they didn't know enough, so I guess I'm glad I didn't ask that!
Tuesday 11th November 2008 - CT Scan
Next stage was a CT scan to get more details about the size and possible spread of the cancer. This procedure involved drinking a litre of a barium drink which tasted suspiciously like Pernod (at 10am in the morning, too!) then having an injection of a dye which was a lovely experience - I was warned that I'd feel a warm flush going around my body, and it was just that, you felt it go up the arm, into the brain then around the body. It would have been fantastic to have after coming inside out of the cold - just like turning the central heating on inside! Then I had about 10 minutes going through the donut of the scanner - nothing interesting to report there, a very easy experience.
Thursday 13th November 2008 - CT & MDT results
On the 12th November, the results of the CT scan were discussed by the Multi-disciplinary team (MDT) which includes the surgeons, oncologists and various other "Upper GI" specialists, and I then met my consultant on the 13th for the follow-up. This was a bit of a scary meeting because I was expecting to find out if I was curable or terminal. Initial signs are very good - tumour is localised with some local lymph-node activity, but no evidence of any spread to other organs. Although cautiously optimistic, they wanted me to have two further procedures to get more detail.
Monday 17th November 2008 - PET Scan
This one in a truck at Bradford hospital - very similar to the CT scan, but with a different "contrast" - something radioactive this time - dispensed from a two inch wide Solid metal syringe which came out of a lead-lined safe! I was warned not to go near small children or pregnant women for 8 hours after the scan!
Friday 21st November 2008 - Ultrasound Endoscopy
Another tube down the throat - but under sedation this time. Cool! Doc told me that they had pretty much confirmed what the CT scan showed, but there is one tiny area near the liver which is inconclusive and they can't get to it to do a biopsy. Hopefully not significant, but if it is could make the difference between cure or terminal, so unfortunately an area of uncertainty until they redo the scans after my chemo cycles. Have been advised not to let it worry me and that's the advice I intend to take!
Monday 24th November 2008 - Meeting with Oncologist
Very feisty lady - while I was there she took a call from Toshiba who were supposed to be delivering her a new laptop and tore a strip off them for being late! Her first question to me after she put the phone down what what my occupation was. When I said I worked for Hewlett Packard she felt a bit guilty! I wish I'd said I was the delivery manager for Toshiba! :)
She confirmed all the above and told me that the second MDT meeting covering my case had been the longest she had ever attended! All about the implications of this 0.9cm x 0.5cm thing near the liver. Result was to continue on an aggressive curative strategy and worry about it later if need be.
Things started moving quickly now ...
Monday 24th November 2008 - Insert PICC line
Straight after meeting the Oncologist, she got me in to have a "Periphally Inserted Central Catheter" inserted. This is a tube into the crack of the left elbow which runs up the large vein in my arm, across the top of my chest and down to near my heart, through which all my chemo treatment goes. Sounds much worse than it is I promise! This line will be in until January.
Tuesday 25th November 2008 - Hospital for first chemo drug
Checked in at 10am and was in overnight through til 5pm yesterday. Connected to IV drips for 24 hours. Only 4 hours of which is the Cisplatin chemo drug, but there needed to be 4 hours of saline flush before and 16 hours afterwards as the drug has a bad effect of the kidneys. Cisplatin contains pure platinum, so I must be worth a fortune at the moment!
Yesterday moning they also fitted my "5FU" bottle, which I am wearing around my waist until Saturday
2 or 3 months ago - symptoms
I first noticed something was a bit odd, when I found that sometimes I was having a difficulty swallowing certain foods. I'd get a few painful hiccups and a trapped wind sensation before things would settle down to normal again. I visited my GP and ended up being referred to a Gastro-enterologist for further checks
Friday 7th November 2008 - endoscope & diagnosis
I went to Elland hospital for an endoscopy - a camera down the throat - expecting a diagnosis of acid reflux or something like that. Unfortunately my consultant told me that I had cancer of the oesophegus - a bit of a shock, but as he was quite certain, you just have to take it in your stride I suppose. I know you are supposed to pass through five stages - denial, anger, bargaining, depression and acceptance, but I genuinely feel that I jumped immediately to acceptance. I asked if the cancer was treatable and was told that it was. I realise now that I asked the wrong question - I should have asked if it was curable, but I would probably have been told at the time that they didn't know enough, so I guess I'm glad I didn't ask that!
Tuesday 11th November 2008 - CT Scan
Next stage was a CT scan to get more details about the size and possible spread of the cancer. This procedure involved drinking a litre of a barium drink which tasted suspiciously like Pernod (at 10am in the morning, too!) then having an injection of a dye which was a lovely experience - I was warned that I'd feel a warm flush going around my body, and it was just that, you felt it go up the arm, into the brain then around the body. It would have been fantastic to have after coming inside out of the cold - just like turning the central heating on inside! Then I had about 10 minutes going through the donut of the scanner - nothing interesting to report there, a very easy experience.
Thursday 13th November 2008 - CT & MDT results
On the 12th November, the results of the CT scan were discussed by the Multi-disciplinary team (MDT) which includes the surgeons, oncologists and various other "Upper GI" specialists, and I then met my consultant on the 13th for the follow-up. This was a bit of a scary meeting because I was expecting to find out if I was curable or terminal. Initial signs are very good - tumour is localised with some local lymph-node activity, but no evidence of any spread to other organs. Although cautiously optimistic, they wanted me to have two further procedures to get more detail.
Monday 17th November 2008 - PET Scan
This one in a truck at Bradford hospital - very similar to the CT scan, but with a different "contrast" - something radioactive this time - dispensed from a two inch wide Solid metal syringe which came out of a lead-lined safe! I was warned not to go near small children or pregnant women for 8 hours after the scan!
Friday 21st November 2008 - Ultrasound Endoscopy
Another tube down the throat - but under sedation this time. Cool! Doc told me that they had pretty much confirmed what the CT scan showed, but there is one tiny area near the liver which is inconclusive and they can't get to it to do a biopsy. Hopefully not significant, but if it is could make the difference between cure or terminal, so unfortunately an area of uncertainty until they redo the scans after my chemo cycles. Have been advised not to let it worry me and that's the advice I intend to take!
Monday 24th November 2008 - Meeting with Oncologist
Very feisty lady - while I was there she took a call from Toshiba who were supposed to be delivering her a new laptop and tore a strip off them for being late! Her first question to me after she put the phone down what what my occupation was. When I said I worked for Hewlett Packard she felt a bit guilty! I wish I'd said I was the delivery manager for Toshiba! :)
She confirmed all the above and told me that the second MDT meeting covering my case had been the longest she had ever attended! All about the implications of this 0.9cm x 0.5cm thing near the liver. Result was to continue on an aggressive curative strategy and worry about it later if need be.
Things started moving quickly now ...
Monday 24th November 2008 - Insert PICC line
Straight after meeting the Oncologist, she got me in to have a "Periphally Inserted Central Catheter" inserted. This is a tube into the crack of the left elbow which runs up the large vein in my arm, across the top of my chest and down to near my heart, through which all my chemo treatment goes. Sounds much worse than it is I promise! This line will be in until January.
Tuesday 25th November 2008 - Hospital for first chemo drug
Checked in at 10am and was in overnight through til 5pm yesterday. Connected to IV drips for 24 hours. Only 4 hours of which is the Cisplatin chemo drug, but there needed to be 4 hours of saline flush before and 16 hours afterwards as the drug has a bad effect of the kidneys. Cisplatin contains pure platinum, so I must be worth a fortune at the moment!
Yesterday moning they also fitted my "5FU" bottle, which I am wearing around my waist until Saturday
Introduction
Hi Folks,
I decided that as several people have asked to be kept up-to-date on my situation, but I don't want to fill up people's inboxes with regular updates, a blog might be a good idea. This way I can post my progress, including all the optional detail, and people can tap into it any time they like to see what's going on.
Let me know via comments, or a personal email if this works for you or if it's too impersonal.
Thanks for all the support and wishes so far,
Love to you all,
Colin.
I decided that as several people have asked to be kept up-to-date on my situation, but I don't want to fill up people's inboxes with regular updates, a blog might be a good idea. This way I can post my progress, including all the optional detail, and people can tap into it any time they like to see what's going on.
Let me know via comments, or a personal email if this works for you or if it's too impersonal.
Thanks for all the support and wishes so far,
Love to you all,
Colin.
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