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! :)
Sunday 30 November 2008
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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