Woke up a bit late (08:30) with the realisation that today is both Halloween and the second anniversary of our house. It was two years ago today that we spent our first night in our first house. Desney is still overwhelmed and upset about the amount of work that still needs doing on the house. The house will always need work, maintenance and mending. But we are now “only” 13 years away from owning it.
Desney had bought pumpkins from the market and she and Alexandra made jack-o-lanterns. I was still getting ready (showever and whatever) so I did my pumpkin after they were done. They were ready to be proudly displayed on top of the entrance columns in the front garden as soon as night fell. With the time change night came earlier than usual. Desney lit the candles in the pumpkins and put them out and prepared a bowl full of sweets by the front door ready for the trick or treaters.
Throughout the day it was getting more and more painful for me to swallow. Desney made me an early dinner as my x-ray treatment was at 19:50. It took me a while to get dinner down and it hurt. I went for my treatment and they were only about 15 minutes late. With the increasing and constant pain in my throat I was going to ask to see a doctor but it was too late. With tomorrow being a holiday everyone had gone home by 20:00. I made my way home.
Alexandra was still awake desperately awaking the arrival of trick or treaters. She went to bed late (22:00) but this year not one trick or treater came. All the more sweets left for the girls.
I finally went to sleep. But the pain swallowing made it difficult to get to sleep. After my operations cold, ice water, ice cream and such relieved, at least temporarily, the pain in my throat. Unfortunately this is no longer the case and nothing seems to work. I tried a pain killer before bed (Efferalgan) but to no great effect.
Monday, October 31, 2005
Sunday, October 30, 2005
Day 14 – The day time moved back
A relatively uneventful day… like I like ‘em!
The biggest event of the day was, of course, that we got to turn all the clocks back and hour thereby providing the entire family with a much needed extra hour of sleep. The girls didn’t wake up until quite late with or without the time change.
I basically didn’t do much and slept a good portion of the afternoon. A bit of television (too much) and a bit of reading (not enough) and a bit of e-mails on the computer and the day flew by.
E.R. in the evening as usual for a Sunday night and then I got sucked in by one of the classic American reality shows: Renovate My Family. It all looked heart-wrenchingly wonderful as they completely destroyed and rebuilt this family’s house and helped them cope with their older child who has been in a wheelchair for two years now and dad who has a serious smoking problem. The result looked great on TV and everyone was tear-jerkingly overjoyed. I wouldn’t have been any the wiser if I hadn’t gone looking for a link for Renovate My Family to add to the blog. What do I find out? It was a nightmare experience so awful that they, like any unhappy American, sued them!. In this particular case, if what I read is anywhere near the truth, it looks like they were right in doing so.
I went to be late and had difficulty sleeping…
The biggest event of the day was, of course, that we got to turn all the clocks back and hour thereby providing the entire family with a much needed extra hour of sleep. The girls didn’t wake up until quite late with or without the time change.
I basically didn’t do much and slept a good portion of the afternoon. A bit of television (too much) and a bit of reading (not enough) and a bit of e-mails on the computer and the day flew by.
E.R. in the evening as usual for a Sunday night and then I got sucked in by one of the classic American reality shows: Renovate My Family. It all looked heart-wrenchingly wonderful as they completely destroyed and rebuilt this family’s house and helped them cope with their older child who has been in a wheelchair for two years now and dad who has a serious smoking problem. The result looked great on TV and everyone was tear-jerkingly overjoyed. I wouldn’t have been any the wiser if I hadn’t gone looking for a link for Renovate My Family to add to the blog. What do I find out? It was a nightmare experience so awful that they, like any unhappy American, sued them!. In this particular case, if what I read is anywhere near the truth, it looks like they were right in doing so.
I went to be late and had difficulty sleeping…
Saturday, October 29, 2005
Day 13 - And now we are four again
Desney got up at 5:30 in the morning to take the Eurostar to go fetch Alex and I slept in. I didn’t get up until about 08:30 and slowly got ready.
My throat is hurting more and more and it hurts to swallow. Yawning hurts particularly. But it’s bearable and I can eat.
Jessica got home about noon looking as pale as a sheet. She apparently averaged about 3 to 4 hours sleep per night while she was away which is generally a sign she had a very good time. She’ll be spending the next 4 days catching up on her sleep before going back to school on Thursday.
The two of us went out for a quick Japanese lunch and then I went shopping at the market for more mushy food and such. Lunch was good, especially as we both love sushi, and the Japanese green tea went down quite well. Jessica spent the entire meal telling me all about her trip and it sounds like it was wonderful.
Desney was able to get an earlier train back and she and Alexandra arrived at about 16:30. Alexandra spoke English for the rest of the evening which is exactly what we wanted to hear. It sounds like she had a great and very adventurous time at Camp Beaumont with absailing and climbing and jumping from ropes to ropes and ploughing through the mud…
It’s great to have the family back together again…
Finished the evening watching the Breeder's Cup Turf race... live from Belmont Park in New York... our horse came in fourth which was a sad and painful end to the day... it was a great race to watch though...
My throat is hurting more and more and it hurts to swallow. Yawning hurts particularly. But it’s bearable and I can eat.
Jessica got home about noon looking as pale as a sheet. She apparently averaged about 3 to 4 hours sleep per night while she was away which is generally a sign she had a very good time. She’ll be spending the next 4 days catching up on her sleep before going back to school on Thursday.
The two of us went out for a quick Japanese lunch and then I went shopping at the market for more mushy food and such. Lunch was good, especially as we both love sushi, and the Japanese green tea went down quite well. Jessica spent the entire meal telling me all about her trip and it sounds like it was wonderful.
Desney was able to get an earlier train back and she and Alexandra arrived at about 16:30. Alexandra spoke English for the rest of the evening which is exactly what we wanted to hear. It sounds like she had a great and very adventurous time at Camp Beaumont with absailing and climbing and jumping from ropes to ropes and ploughing through the mud…
It’s great to have the family back together again…
Finished the evening watching the Breeder's Cup Turf race... live from Belmont Park in New York... our horse came in fourth which was a sad and painful end to the day... it was a great race to watch though...
Friday, October 28, 2005
Day 12
A relatively easy day.
As usual it took me a while to get ready in the morning. But it wasn’t as bad as usual this morning and I was actually dressed by 11:00.
I went through e-mails for a while and at about 12:30 I went out and got myself some lunch. Remembering how well the steak went down last night, with a bit of salt added to get the old salivary glands working, I thought I’d try a “sandwich grec” (Greek sandwich) sometimes referred to as a “sandwich turc” (Turkish sandwich) and known as a Doner Kebab in Britain. These are generally really salty and served with chips (fries for the Americans in the audience) in the sandwich. Here in France, and especially in my neighbourhood, we add harissa sauce. The sandwich was actually delicious and the salt helped a lot. However at one point in the sandwich I hit a lump of harissa and thought I was going to die. The burning sensation down my throat could not be helped by water. I drank half a litre. It wasn’t the normal burning sensation as when one eats something spicy. It was a burning sensation as though I had literally eaten something that was boiling. Sweat was running down my face from the spice and tears were running down my cheeks from the pain. I had never realised how one sandwich could be such an intense experience. I opened the sandwich and ate the rest of the insides with a fork so as to avoid the sauce on the bread.
I’m learning…
Back to the clinic for my treatment. They were late as always but I had my book to read, on my Palm, so I was fine. After treatment I got them to book my x-ray treatments for the chemo week fitting the treatment just before the start of chemo each day. I went home with an ever increasing feeling of dread as chemo is now a week closer.
Back home I put myself to bed and didn’t get up again until Desney got home after 18:00. She made a dinner of salmon and some pasta with courgettes and it all went down well.
I realise I spend most of this blog talking about what I eat. However not only is food one of the great pleasures, and most important aspects, of my life. But I also use this blog to go back in time and see what I was capable of days/weeks earlier and what the cause and effect was on my body. I apologise if the medical and gastronomical aspects get boring. But I selfishly use this blog for myself more than anyone else. You’re all invited spectators not targeted readers. It’s an interesting, and more than slightly narcisstic, concept.
After dinner I started to realise just how much my throat is starting to hurt. The dry mouth is constant and there is slight pain every time I swallow. At the moment it's not even at the level it was at after my last surgery so it is more than bearable and I can eat solids without difficulty. However when I yawn I get a sneak preview of what the pain is going to be like as, luckily for a very short moment, it definitely hurts. I can only imagine that all of this is going to get worse during the next week.
Because I had slept so much in the afternoon I didn’t get to sleep until very late. I hope I didn’t wake Desney…
As usual it took me a while to get ready in the morning. But it wasn’t as bad as usual this morning and I was actually dressed by 11:00.
I went through e-mails for a while and at about 12:30 I went out and got myself some lunch. Remembering how well the steak went down last night, with a bit of salt added to get the old salivary glands working, I thought I’d try a “sandwich grec” (Greek sandwich) sometimes referred to as a “sandwich turc” (Turkish sandwich) and known as a Doner Kebab in Britain. These are generally really salty and served with chips (fries for the Americans in the audience) in the sandwich. Here in France, and especially in my neighbourhood, we add harissa sauce. The sandwich was actually delicious and the salt helped a lot. However at one point in the sandwich I hit a lump of harissa and thought I was going to die. The burning sensation down my throat could not be helped by water. I drank half a litre. It wasn’t the normal burning sensation as when one eats something spicy. It was a burning sensation as though I had literally eaten something that was boiling. Sweat was running down my face from the spice and tears were running down my cheeks from the pain. I had never realised how one sandwich could be such an intense experience. I opened the sandwich and ate the rest of the insides with a fork so as to avoid the sauce on the bread.I’m learning…
Back to the clinic for my treatment. They were late as always but I had my book to read, on my Palm, so I was fine. After treatment I got them to book my x-ray treatments for the chemo week fitting the treatment just before the start of chemo each day. I went home with an ever increasing feeling of dread as chemo is now a week closer.
Back home I put myself to bed and didn’t get up again until Desney got home after 18:00. She made a dinner of salmon and some pasta with courgettes and it all went down well.
I realise I spend most of this blog talking about what I eat. However not only is food one of the great pleasures, and most important aspects, of my life. But I also use this blog to go back in time and see what I was capable of days/weeks earlier and what the cause and effect was on my body. I apologise if the medical and gastronomical aspects get boring. But I selfishly use this blog for myself more than anyone else. You’re all invited spectators not targeted readers. It’s an interesting, and more than slightly narcisstic, concept.
After dinner I started to realise just how much my throat is starting to hurt. The dry mouth is constant and there is slight pain every time I swallow. At the moment it's not even at the level it was at after my last surgery so it is more than bearable and I can eat solids without difficulty. However when I yawn I get a sneak preview of what the pain is going to be like as, luckily for a very short moment, it definitely hurts. I can only imagine that all of this is going to get worse during the next week.
Because I had slept so much in the afternoon I didn’t get to sleep until very late. I hope I didn’t wake Desney…
Thursday, October 27, 2005
Day 11
Days go by…
I still have a lot of trouble getting moving in the morning. As everyone knows I have never really been a morning person. But I have always been able to cope and perform. It’s actually getting frustrating how long it takes me before I’m finished with the morning routine (breakfast, toilet, shower, shave, teeth, throat and dressed).
One minor occurrence: the tube going from the tap to the shower head bust while I was having a shower. Luckily this didn’t happen during one of the three showers I take with the pump attached to me as water went absolutely everywhere.
At the end of the morning, beginning of the afternoon, I had my shower, ate my lunch (loving pre-prepared by Desney) and headed back to the clinic. In and out and back home. It takes me much longer to get to the clinic than the time I spend there when I only have x-ray therapy. This is fine by me as I get depressed just walking down the street to the clinic let alone sitting in the waiting rooms which are 90% filled with people like me… none of whom are happy. Would you be?
I got home from the clinic, went to the hardware store and got a new tube for the shower and went to the barber and got my haircut. There’s still this thought in the back of my head: “Why am I paying somebody 12 € to cut my hair when it’s probably all going to fall out in the next couple of weeks?” But it was starting to get difficult to wash so I guess it was worth it.
Finally got home and slept until dinner. Desney made a lovely steak for dinner which I was able to eat. Everything tastes bland to me. I think that is basically due to the lack of saliva.
My current situation as regards the evolution of all of this is that my mouth and throat get drier every day. It doesn’t actually hurt (yet) except when I yawn. But everything is very dry. When I drink water my mouth and throat feel lubricated again but it only lasts seconds. The solution would be to somehow attach a pump that shoves water in my mouth every 30 seconds throughout the day. But just the calculation of how much time I’d spend running back and forth to the toilet negates this option.
So far so good… Moving forward… Counting the days… Still fearing the next week of chemo (in 10 more days).
I still have a lot of trouble getting moving in the morning. As everyone knows I have never really been a morning person. But I have always been able to cope and perform. It’s actually getting frustrating how long it takes me before I’m finished with the morning routine (breakfast, toilet, shower, shave, teeth, throat and dressed).
One minor occurrence: the tube going from the tap to the shower head bust while I was having a shower. Luckily this didn’t happen during one of the three showers I take with the pump attached to me as water went absolutely everywhere.
At the end of the morning, beginning of the afternoon, I had my shower, ate my lunch (loving pre-prepared by Desney) and headed back to the clinic. In and out and back home. It takes me much longer to get to the clinic than the time I spend there when I only have x-ray therapy. This is fine by me as I get depressed just walking down the street to the clinic let alone sitting in the waiting rooms which are 90% filled with people like me… none of whom are happy. Would you be?
I got home from the clinic, went to the hardware store and got a new tube for the shower and went to the barber and got my haircut. There’s still this thought in the back of my head: “Why am I paying somebody 12 € to cut my hair when it’s probably all going to fall out in the next couple of weeks?” But it was starting to get difficult to wash so I guess it was worth it.
Finally got home and slept until dinner. Desney made a lovely steak for dinner which I was able to eat. Everything tastes bland to me. I think that is basically due to the lack of saliva.
My current situation as regards the evolution of all of this is that my mouth and throat get drier every day. It doesn’t actually hurt (yet) except when I yawn. But everything is very dry. When I drink water my mouth and throat feel lubricated again but it only lasts seconds. The solution would be to somehow attach a pump that shoves water in my mouth every 30 seconds throughout the day. But just the calculation of how much time I’d spend running back and forth to the toilet negates this option.
So far so good… Moving forward… Counting the days… Still fearing the next week of chemo (in 10 more days).
Wednesday, October 26, 2005
Day 10
A day off! No treatment today... just an excuse to lie around the house...
As always it took me forever to get going in the morning. However food went well throughout the day. I'm still tired most of the time, and there's a level of nausea that's always there and annoying, but it's all bearable. No real pain (yet).
I was able to catch up with some e-mails and such and get involved. I also checked out the blog of a friend of ours who moved back to America. He had read a disappointing wine book so I added a comment to his blog with a recommendation for a different book... hopefully he'll read the comment... I've now started checking out his blog to see what he adds regularly. I have to admit I'm finding this concept more and more intriguing.
Not much to say about my activities as apart from keeping myself clean and hydrated (at least 2 litres of water a day) I spend the rest of the time going to the toilet as a direct cause and effect reaction to the hydration point or sleeping/napping. Not really exciting or even interesting.
It was a beautiful day out today and many degrees hotter than normal for this season. Temperature records are being broken daily all around Europe and probably the world. Could this, in some way, be due to Global Warming? Nah... Of course not [tongue planted firmly in cheek].
When I go outside I have to do the opposite of what the song suggests. I try and leave my worries on my doorstep but I have to keep away from the sunny side of the street. I have to keep my neck scars/wounds away from the sun for a year (until September 2006). In addition the chemo is having slight affects on my skin which has gone from its rather attractive Italian olive tints to a much greener look of nausea... or maybe that's just the way I see myself in the mirror. If (When) my hair falls out I'll not only have to keep my neck out of the sun but my entire head. One of the simple pleasures of owning a house however is that I can sit outside, on the front bench, in our little front garden in the shade. I'm outside, out of the sun, and still in my house and on my property. Luckily I haven't installed an outdoor webcam/netcam (yet) or you'd see me sitting on the bench, reading a book, in my dressing gown.
As I spend so much time lying around I also get to spend much too much time watching television. As everyone knows good television exists. But as everyone knows it only accounts for less than 1% of all television programming. I therefore watch a lot of rubbish. It's rare that something is so ridiculous it makes me laugh as often I just change the channel. You will never find me sitting in front of The Jerry Springer Show for more than a nanosecond. However I was flicking through the hundreds of channels, thanks to cable, and stopped on one of those stupid American sensationalist "we'll prove that you'll do anything for money" shows called Fear Factor. In this show they basically put you through "events" which scare the life out of you and the winner "earns" US$50,000. They started with 6 candidates and they had to do things like being dropped, on a bungee rope, from hundreds of feet whereby they crashed through a wall and had to drop a sort of flag on a target. No problem for all of them to do that but one candidate gets eliminated. 5 candidates left. Now they put them each in a car which they drop in the river. Underwater they have to unstrap themselves, swim to the back seat and unstrap a baby doll, swim back to the front seat, roll down the window and swim out the front window to safety. No problem for all of them do that but one candidate gets eliminated. 4 candidates left (2 guys and 2 gals). This is where I both burst out laughing and eventually changed the channel. They bring them in to a restaurant (more like a diner actually) for their next challenge. The host brings out a plate and explains the challenge. Each contestant is going to have to eat two buffalo's testicles. They're cooked and the contestant can not hold their nose or spit any out. They're served without any sauce from what I can see so I can understand this being less than appetizing. However this is one of the regular winter dishes of the south of France (albeit bull's balls instead of buffalo's balls) which we've eaten for centuries. These people agree to be dropped hundreds of feet in free flight and to be dropped underwater locked inside of a car but TWO OUT OF FOUR (both gals) refuse to take the challenge of eating two buffalo's testicles and are eliminated from the competition! Ah the Americans... such gastronomic experts [rof,l].
I turned off the television and went back to my book and much greater enjoyment and entertainment...
As always it took me forever to get going in the morning. However food went well throughout the day. I'm still tired most of the time, and there's a level of nausea that's always there and annoying, but it's all bearable. No real pain (yet).
I was able to catch up with some e-mails and such and get involved. I also checked out the blog of a friend of ours who moved back to America. He had read a disappointing wine book so I added a comment to his blog with a recommendation for a different book... hopefully he'll read the comment... I've now started checking out his blog to see what he adds regularly. I have to admit I'm finding this concept more and more intriguing.
Not much to say about my activities as apart from keeping myself clean and hydrated (at least 2 litres of water a day) I spend the rest of the time going to the toilet as a direct cause and effect reaction to the hydration point or sleeping/napping. Not really exciting or even interesting.
It was a beautiful day out today and many degrees hotter than normal for this season. Temperature records are being broken daily all around Europe and probably the world. Could this, in some way, be due to Global Warming? Nah... Of course not [tongue planted firmly in cheek].
When I go outside I have to do the opposite of what the song suggests. I try and leave my worries on my doorstep but I have to keep away from the sunny side of the street. I have to keep my neck scars/wounds away from the sun for a year (until September 2006). In addition the chemo is having slight affects on my skin which has gone from its rather attractive Italian olive tints to a much greener look of nausea... or maybe that's just the way I see myself in the mirror. If (When) my hair falls out I'll not only have to keep my neck out of the sun but my entire head. One of the simple pleasures of owning a house however is that I can sit outside, on the front bench, in our little front garden in the shade. I'm outside, out of the sun, and still in my house and on my property. Luckily I haven't installed an outdoor webcam/netcam (yet) or you'd see me sitting on the bench, reading a book, in my dressing gown.
As I spend so much time lying around I also get to spend much too much time watching television. As everyone knows good television exists. But as everyone knows it only accounts for less than 1% of all television programming. I therefore watch a lot of rubbish. It's rare that something is so ridiculous it makes me laugh as often I just change the channel. You will never find me sitting in front of The Jerry Springer Show for more than a nanosecond. However I was flicking through the hundreds of channels, thanks to cable, and stopped on one of those stupid American sensationalist "we'll prove that you'll do anything for money" shows called Fear Factor. In this show they basically put you through "events" which scare the life out of you and the winner "earns" US$50,000. They started with 6 candidates and they had to do things like being dropped, on a bungee rope, from hundreds of feet whereby they crashed through a wall and had to drop a sort of flag on a target. No problem for all of them to do that but one candidate gets eliminated. 5 candidates left. Now they put them each in a car which they drop in the river. Underwater they have to unstrap themselves, swim to the back seat and unstrap a baby doll, swim back to the front seat, roll down the window and swim out the front window to safety. No problem for all of them do that but one candidate gets eliminated. 4 candidates left (2 guys and 2 gals). This is where I both burst out laughing and eventually changed the channel. They bring them in to a restaurant (more like a diner actually) for their next challenge. The host brings out a plate and explains the challenge. Each contestant is going to have to eat two buffalo's testicles. They're cooked and the contestant can not hold their nose or spit any out. They're served without any sauce from what I can see so I can understand this being less than appetizing. However this is one of the regular winter dishes of the south of France (albeit bull's balls instead of buffalo's balls) which we've eaten for centuries. These people agree to be dropped hundreds of feet in free flight and to be dropped underwater locked inside of a car but TWO OUT OF FOUR (both gals) refuse to take the challenge of eating two buffalo's testicles and are eliminated from the competition! Ah the Americans... such gastronomic experts [rof,l].
I turned off the television and went back to my book and much greater enjoyment and entertainment...
Tuesday, October 25, 2005
Day 9
It's like a roller coaster ride... every day has its ups and downs.
Today started very, very slowly. Still feeling a bit nauseous all the time which is a pain but bearable. It tok me forever to eat in the morning and even longer to get my act together and get in to gear. I did a bit of e-mails in the morning which felt productive and finally raced through my shower, as much as I can race through anything at the moment, and ate my lunch quickly before heading back to the clinic.
Desney had prepared me lunch and left it in the fridge for me so I didn't have to do anything. Yet another brief flash of "What would I do without her?" as I tucked in. A very nice salad and some smoked salmon with some good bread. What more can a guy ask for?
Back on the bus to the clinic, in and out, and back on the bus home. I finally finished my book (J.D. Robb's Survivor in Death) which I was reading in the old-fashioned paperback version. I actually quite liked the book, which is the latest installment in the "In Death" series, so I ordered the first 3 of the series from Amazon. When I'm in chemo and worried about batteries and such it's good to have something to read on paper that does not say "batteries not included". As I finished the book, and I was bored, I started the next book on my Palm (Sims by F. Paul Wilson) which has turned out to be quite fun.
I got home exhausted as usual. However this time I listened to my body and put myself to bed. Emma was cleaning today so I actually crawled in to our bed in our bedroom. That was about 15:30... I didn't wake up until just before Desney got home at about 18:15. Dead to the world...
Spent most of the night still feeling tired and more nauseous than usual. I was able to eat dinner, at least most of it, but not as much as I wanted to. As Desney says my eyes are too big for my stomach when it comes to second helpings at the moment. She did a lovely veal with wild mushrooms and cream sauce on rice and peas. Delicious... from what I could tell...
Did a bit of computer stuff in the evening and passed out late as usual...
Today started very, very slowly. Still feeling a bit nauseous all the time which is a pain but bearable. It tok me forever to eat in the morning and even longer to get my act together and get in to gear. I did a bit of e-mails in the morning which felt productive and finally raced through my shower, as much as I can race through anything at the moment, and ate my lunch quickly before heading back to the clinic.
Desney had prepared me lunch and left it in the fridge for me so I didn't have to do anything. Yet another brief flash of "What would I do without her?" as I tucked in. A very nice salad and some smoked salmon with some good bread. What more can a guy ask for?
Back on the bus to the clinic, in and out, and back on the bus home. I finally finished my book (J.D. Robb's Survivor in Death) which I was reading in the old-fashioned paperback version. I actually quite liked the book, which is the latest installment in the "In Death" series, so I ordered the first 3 of the series from Amazon. When I'm in chemo and worried about batteries and such it's good to have something to read on paper that does not say "batteries not included". As I finished the book, and I was bored, I started the next book on my Palm (Sims by F. Paul Wilson) which has turned out to be quite fun.
I got home exhausted as usual. However this time I listened to my body and put myself to bed. Emma was cleaning today so I actually crawled in to our bed in our bedroom. That was about 15:30... I didn't wake up until just before Desney got home at about 18:15. Dead to the world...
Spent most of the night still feeling tired and more nauseous than usual. I was able to eat dinner, at least most of it, but not as much as I wanted to. As Desney says my eyes are too big for my stomach when it comes to second helpings at the moment. She did a lovely veal with wild mushrooms and cream sauce on rice and peas. Delicious... from what I could tell...
Did a bit of computer stuff in the evening and passed out late as usual...
Monday, October 24, 2005
Day 8
If only every treatment day were like today...
The nausea is still at a bearable level and I am able to eat normally. It takes me hours to get ready in the morning but no one's waiting for me...
I grabbed a sandwich from the bakery, which I was able to eat, on my way to the clinic. A quick half-hour later and I was back on my way home after the x-ray treatment. I stopped off at a café, at Porte de Champerret, and had a cup of coffee like a normal person. It tasted a bit funny, as just about everything does these days, but certainly enjoyable and appreciated.
I got home with a bit of energy so I worked for bit in front of my computer. I should have taken a nap. It was a great feeling to get some work done, catch up with e-mails, feel a bit productive, put out some fires and help move things along. But I should have taken a nap when I had gotten home.
I never see time fly, zoom and blur by at light speed when I'm working in front of a computer. How many times have I gotten up from my chair only to suddenly realise it's been hours since I've gone to the toilet? I feel glad and lucky that I can still use computers and that they still provide me with such pleasure.
Desney got home and I suddenly realised what time it was. I got up from my desk and could have passed out then and there. I went upstairs and lied down for a bit and she prepared dinner.
It was great to sit down at table, just the two of us, and eat properly (fish, green beans (garlic & olive oil) and carrots). It still takes me forever to eat but it's also still a pleasure... even though I never know what something is going to taste like until I put it in my mouth. This adds a certain mystery and apprehension to every dish...
About an hour after dinner I tried a scoop of Haagen Dazs vanilla ice cream which had been my saviour throughout my post-operatory recuperation. Unfortunately it doesn't taste as good as it used to and doesn't do wonders for my nausea. I seem to be being forced to sacrifice all of my great gustatory pleasures in my life (wine, tasty foods, wine, ice cream, wine, cheese and wine). I certainly hope it's temporary!
Overall though a definitely positive step forward through the treatment. If only every treatment day were like today...
The nausea is still at a bearable level and I am able to eat normally. It takes me hours to get ready in the morning but no one's waiting for me...
I grabbed a sandwich from the bakery, which I was able to eat, on my way to the clinic. A quick half-hour later and I was back on my way home after the x-ray treatment. I stopped off at a café, at Porte de Champerret, and had a cup of coffee like a normal person. It tasted a bit funny, as just about everything does these days, but certainly enjoyable and appreciated.
I got home with a bit of energy so I worked for bit in front of my computer. I should have taken a nap. It was a great feeling to get some work done, catch up with e-mails, feel a bit productive, put out some fires and help move things along. But I should have taken a nap when I had gotten home.
I never see time fly, zoom and blur by at light speed when I'm working in front of a computer. How many times have I gotten up from my chair only to suddenly realise it's been hours since I've gone to the toilet? I feel glad and lucky that I can still use computers and that they still provide me with such pleasure.
Desney got home and I suddenly realised what time it was. I got up from my desk and could have passed out then and there. I went upstairs and lied down for a bit and she prepared dinner.
It was great to sit down at table, just the two of us, and eat properly (fish, green beans (garlic & olive oil) and carrots). It still takes me forever to eat but it's also still a pleasure... even though I never know what something is going to taste like until I put it in my mouth. This adds a certain mystery and apprehension to every dish...
About an hour after dinner I tried a scoop of Haagen Dazs vanilla ice cream which had been my saviour throughout my post-operatory recuperation. Unfortunately it doesn't taste as good as it used to and doesn't do wonders for my nausea. I seem to be being forced to sacrifice all of my great gustatory pleasures in my life (wine, tasty foods, wine, ice cream, wine, cheese and wine). I certainly hope it's temporary!
Overall though a definitely positive step forward through the treatment. If only every treatment day were like today...
Sunday, October 23, 2005
Day 7
Finally the days are getting better.
Awoke with only slight nausea... certainly bearable. I had a Primperan and was able to eat a full breakfast (toast, yogurt and even a bowl of fruit salad Desney had prepared). It was a good feeling.
Still feeling very tired so I slept most of the morning and a good part of the afternoon. Desney spent almost the entire day out in the gardens as it was a nice day out. I didn't even take a shower until the end of the day... around 5 o'clock. Real showers since Friday morning and I appreciate every single one of 'em!
Desney made a nice dinner and I was able to eat everything (chicken legs, broccoli (my favourite), rice with a tomato and garlic sauce). It was a great feeling to have a full stomach again.
The nausea is now down to an acceptable level nothing more than just uncomfortable. I believe I can live with this. It's (again) a good feeling to know there's a light at the end of the chemotherapy tunnel. It will be a bit easier next time (I hope) with the foreknowledge that at the end of the week I should be feeling like I feel today.
Awoke with only slight nausea... certainly bearable. I had a Primperan and was able to eat a full breakfast (toast, yogurt and even a bowl of fruit salad Desney had prepared). It was a good feeling.
Still feeling very tired so I slept most of the morning and a good part of the afternoon. Desney spent almost the entire day out in the gardens as it was a nice day out. I didn't even take a shower until the end of the day... around 5 o'clock. Real showers since Friday morning and I appreciate every single one of 'em!
Desney made a nice dinner and I was able to eat everything (chicken legs, broccoli (my favourite), rice with a tomato and garlic sauce). It was a great feeling to have a full stomach again.
The nausea is now down to an acceptable level nothing more than just uncomfortable. I believe I can live with this. It's (again) a good feeling to know there's a light at the end of the chemotherapy tunnel. It will be a bit easier next time (I hope) with the foreknowledge that at the end of the week I should be feeling like I feel today.
Saturday, October 22, 2005
Day 6
I awoke after Desney and Alexandra had already left and Jessica had left for school.
This is the first day when I do not have to go to the clinic for any treatment whatsoever. Unfortunately that didn’t get rid of the nausea…
Jessica got home after school and I had some soup. I actually started feeling a bit better and was getting more than hopeful. I slept a bit and when I woke up I actually felt that the nausea was a level that would allow me to eat. I had some crackers and was feeling a bit stronger.
Jessica spent the afternoon preparing and packing for her trip to Italy with her friends.
In the evening I was actually able to help Jessica make dinner and we had pasta. We couldn’t agree on which to have so I had Carbonara and she had Pesto. I was actually able to eat a whole big bowl. I can’t say it felt wonderful but it felt like a major achievement. We ate dinner while watching the final of Strictly Come Dancing on the TV (BBC Prime). A very American way of eating but it was a special occasion.
After dinner Jessica left to go to her friend’s house where she’s spending the night as they will leave together the next morning to go to the airport. Desney ended up getting an earlier Eurostar and she was home by about 22:30. She appeared glad to see me feeling a bit better.
This is the first day when I do not have to go to the clinic for any treatment whatsoever. Unfortunately that didn’t get rid of the nausea…
Jessica got home after school and I had some soup. I actually started feeling a bit better and was getting more than hopeful. I slept a bit and when I woke up I actually felt that the nausea was a level that would allow me to eat. I had some crackers and was feeling a bit stronger.
Jessica spent the afternoon preparing and packing for her trip to Italy with her friends.
In the evening I was actually able to help Jessica make dinner and we had pasta. We couldn’t agree on which to have so I had Carbonara and she had Pesto. I was actually able to eat a whole big bowl. I can’t say it felt wonderful but it felt like a major achievement. We ate dinner while watching the final of Strictly Come Dancing on the TV (BBC Prime). A very American way of eating but it was a special occasion.
After dinner Jessica left to go to her friend’s house where she’s spending the night as they will leave together the next morning to go to the airport. Desney ended up getting an earlier Eurostar and she was home by about 22:30. She appeared glad to see me feeling a bit better.
Friday, October 21, 2005
Day 5
Much the same as lately. The only positive aspect of the day is that it’s Friday (TGIF).
Felt awful in the morning and couldn’t get much food down.
Got to the clinic in the afternoon and got a lot of things done. I worked out my taxi reimbursements. I scheduled my following week of x-ray treatments and even got them to move my 2 early morning appointments (08:40 and 09:10) to the afternoon with the explanation that with the nausea I’m experiencing I could never get out of the house before noon. They were very comprehensible. After my x-ray treatment I asked to see a doctor.
I was hoping I wouldn’t get to see Dr. Kanoui as I believe he’s only there on Wednesdays and Thursdays. It was a different doctor this time: Dr. Chauveinc. He was quite kind albeit quick and technical. I would put his bedside manner somewhere between that of Doctors Mammar and Kanoui. I explained to him my situation and he kindly prescribed stronger doses of Zophren (anti-nausea medication) as suppositories and some more laxative medication. He said that about 20% of patients have a strong negative reaction to the chemo chemical they’re using on me as it is particularly strong. I knew I would be the one out of five. He said that the nausea should subside by the end of the weekend as the product works its way through my system. I thanked him with great hopes for the future.
Busy night at home. Alexandra’s getting ready for her trip to England tomorrow to go to camp for a week. Desney’s accompanying her on the Eurostar to London and then coming back in the evening. The house was full with the standard pre-trip yelling and screaming of packing and preparations.
The family ate Japanese and I had soup. We watched Risky Business which turned out to be yet another 80s movie Jessica hasn’t liked…
When I took my anti-nausea tablet before going to bed it made me (finally) throw up. With my throat it was certainly not an enjoyable experience. I had hoped that as I had finally threw up, even though it was only liquids, I would finally feel better.
No such luck…
Felt awful in the morning and couldn’t get much food down.
Got to the clinic in the afternoon and got a lot of things done. I worked out my taxi reimbursements. I scheduled my following week of x-ray treatments and even got them to move my 2 early morning appointments (08:40 and 09:10) to the afternoon with the explanation that with the nausea I’m experiencing I could never get out of the house before noon. They were very comprehensible. After my x-ray treatment I asked to see a doctor.
I was hoping I wouldn’t get to see Dr. Kanoui as I believe he’s only there on Wednesdays and Thursdays. It was a different doctor this time: Dr. Chauveinc. He was quite kind albeit quick and technical. I would put his bedside manner somewhere between that of Doctors Mammar and Kanoui. I explained to him my situation and he kindly prescribed stronger doses of Zophren (anti-nausea medication) as suppositories and some more laxative medication. He said that about 20% of patients have a strong negative reaction to the chemo chemical they’re using on me as it is particularly strong. I knew I would be the one out of five. He said that the nausea should subside by the end of the weekend as the product works its way through my system. I thanked him with great hopes for the future.
Busy night at home. Alexandra’s getting ready for her trip to England tomorrow to go to camp for a week. Desney’s accompanying her on the Eurostar to London and then coming back in the evening. The house was full with the standard pre-trip yelling and screaming of packing and preparations.
The family ate Japanese and I had soup. We watched Risky Business which turned out to be yet another 80s movie Jessica hasn’t liked…
When I took my anti-nausea tablet before going to bed it made me (finally) throw up. With my throat it was certainly not an enjoyable experience. I had hoped that as I had finally threw up, even though it was only liquids, I would finally feel better.
No such luck…
Thursday, October 20, 2005
Day 4
Today was ever so slightly better than yesterday. The emphasis being on “ever so slightly”.
Still nauseous 24-hours-a-day and absolutely exhausted. I’m not eating much as it takes me about and hour to eat a yogurt and anything solid makes me ready to throw up. Drinking lots of water though… keeping up my 2 to 3 litres a day.
I made it to my appointment at the clinic. The nurses realised immediately that I wasn’t feeling well and they were very kind. The x-ray treatment was relatively easy as usual. The best part of the day was when they removed my pump in chemotherapy. I didn’t have any chemo today and it only took them about 10 minutes to remove the pump.
Went home and went to sleep.
Couldn’t really eat dinner…
Still nauseous 24-hours-a-day and absolutely exhausted. I’m not eating much as it takes me about and hour to eat a yogurt and anything solid makes me ready to throw up. Drinking lots of water though… keeping up my 2 to 3 litres a day.
I made it to my appointment at the clinic. The nurses realised immediately that I wasn’t feeling well and they were very kind. The x-ray treatment was relatively easy as usual. The best part of the day was when they removed my pump in chemotherapy. I didn’t have any chemo today and it only took them about 10 minutes to remove the pump.
Went home and went to sleep.
Couldn’t really eat dinner…
Wednesday, October 19, 2005
Day 3
I knew there were going to be good days, not so good days and days I don’t even want to mention. Today was definitely a not so good day.
I woke up feeling nauseous and completely zonked out tired. It took me forever to get a bit of food down (toast, yogurt and some apple purée) and even longer to get cleaned up and ready to go. Today was a bit early session at the clinic so I had to get ready somewhat quickly.
I got to the clinic on time. They asked how I was doing and I was honest. I told them I was nauseous, very tired and still constipated. They were very sympathetic, in the chemotherapy department, as always. I went off and had my x-ray therapy done which, as usual, was quite simple. A bit of neck twisting this time but no big deal.
Back to chemotherapy for my standard treatment. But as I wasn’t feeling well at the start it certainly didn’t get any better. At about half way through the main chemo product, during the second hour, I started to get the shakes and shivers. They called Dr. Kanoui and they stopped the treatment. They put a special blanked on me and replaced the chemo with a bit of cortisone to stop the shivers and Dr. Kanoui came to check up on me. Once the cortisone was through, and I had stopped shivering, they finished off the chemo product but with a very slow drip to see if I would react again. Desney showed up to accompany me home and unfortunately had to wait for an extra hour and a half as my treatment had been delayed by all of the complications.
We took a cab home and I basically passed out on the couch. I was definitely feeling rough. I should have taken a primperan (antinausea) tablet then but I didn’t even think I could swallow the water… I awoke a few hours later at dinner time. I sat at the table while the family ate but I couldn’t eat.
I had already missed lunch and knew I was going to have to eat something before going to sleep. Desney reheated dinner for me and I tried to eat what I could. The duck and potatoes were a bit too heavy but the green beans went done fine. She then made me a bit of pasta and pesto which went down wonderfully. I was feeling a bit better after all of that and was at least able to watch a bit of TV.
At the clinic they explained to me that the complications were due to the cumulated effect of the chemo treatment. Definitely a rough day…
But only the beginning…
I woke up feeling nauseous and completely zonked out tired. It took me forever to get a bit of food down (toast, yogurt and some apple purée) and even longer to get cleaned up and ready to go. Today was a bit early session at the clinic so I had to get ready somewhat quickly.
I got to the clinic on time. They asked how I was doing and I was honest. I told them I was nauseous, very tired and still constipated. They were very sympathetic, in the chemotherapy department, as always. I went off and had my x-ray therapy done which, as usual, was quite simple. A bit of neck twisting this time but no big deal.
Back to chemotherapy for my standard treatment. But as I wasn’t feeling well at the start it certainly didn’t get any better. At about half way through the main chemo product, during the second hour, I started to get the shakes and shivers. They called Dr. Kanoui and they stopped the treatment. They put a special blanked on me and replaced the chemo with a bit of cortisone to stop the shivers and Dr. Kanoui came to check up on me. Once the cortisone was through, and I had stopped shivering, they finished off the chemo product but with a very slow drip to see if I would react again. Desney showed up to accompany me home and unfortunately had to wait for an extra hour and a half as my treatment had been delayed by all of the complications.
We took a cab home and I basically passed out on the couch. I was definitely feeling rough. I should have taken a primperan (antinausea) tablet then but I didn’t even think I could swallow the water… I awoke a few hours later at dinner time. I sat at the table while the family ate but I couldn’t eat.
I had already missed lunch and knew I was going to have to eat something before going to sleep. Desney reheated dinner for me and I tried to eat what I could. The duck and potatoes were a bit too heavy but the green beans went done fine. She then made me a bit of pasta and pesto which went down wonderfully. I was feeling a bit better after all of that and was at least able to watch a bit of TV.
At the clinic they explained to me that the complications were due to the cumulated effect of the chemo treatment. Definitely a rough day…
But only the beginning…
Tuesday, October 18, 2005
Day 2
It was certainly strange sleeping with the pump attached to my chest… but I slept all the same. Got up early and luckily wasn’t feeling too nauseous. Breakfast took a while and some sort of shower took even longer.
It was certainly nice to spend an entire morning without worrying about someone showing up at 11:30 to stick me with a needle. I actually had enough energy to catch up with a bit of e-mail. I mostly went over what is going on in APESA (the Anglophone section parents’ association at Jessica's school of which I am supposed to be the president). There’s a lot happening there at the moment and it felt good to be at least a bit involved and kept up to date.
I went out to grab a sandwich at the bakery and pickup some more medicine from the chemists. Unfortunately the chemist closes at lunch time, which I always find ridiculous, and the bakery didn’t have anything interesting left. I therefore strolled down to my local café / bar and had a sandwich there. It felt good standing up at the bar at my “usual” like a normal person. They hopefully couldn’t see the pump hidden under my shirt and under my jacket. I’m sure they noticed the scar. But no one said anything. They may have noticed the x-ray therapy markings on my chest but I doubt anyone looked that closely. I was a good feeling to stand at the bar and have lunch like others. The barman (Pierrot) was a bit shocked when he proposed me my usual choice (panache or Côtes) and I had a coke instead. A panaché is a half-half mixture of beer and lemonade and a Côtes is short for a glass of red Côtes de Rhône (Rhône valley red wine). He must have thought I had too much to drink the night before. The coke tasted awful but the sandwich tasted OK. I actually had a coffee which tasted pretty good as well.
Back home and off to the clinic. Today was my first x-ray therapy. It didn’t take long and it certainly didn’t hurt. It takes longer to strap me in and get me in to position than it does to actually carry out the treatment. They shot me with 3 sets of rays. It doesn’t hurt but I can feel warmth where they shoot. They did one on the left, one on the right and one in the middle. From how it felt it appears as though they’re starting from the bottom and working their way up. About five minutes later they were unstrapping me and sending me off to chemo.
Chemo was just like yesterday. They asked me repeatedly how I was, how I slept and if I had any nausea, constipation or that sort of thing. No nausea and I’m dealing with the other problem. They disconnected the pump and connected the “cocktail”. I had my eyes closed so I didn’t see really notice what was going on. I had a new young nurse who I fear was a bit underexperienced. Later on, when they changed the bag the first time, I realized that she had done things in the wrong order. Normally they dilute me with this hydration bag first, then antinausea medication, then the chemo and finally another dilution. Each dilution takes an hour so they inject the antinausea medication just before the chemo so as to enforce the effect. The nurse started me with the antinausea medication today before the dilution. Yesterday’s nurse, Barbara, reassured me that it should not be a problem. I was reassured at about 85%... we’ll see how it goes.
I lied back and listened to my relaxing music and then a bit of Modern Jazz Quartet and finally a bit of James Carter. About an hour before everything was finished Jessica showed up to keep me company and accompany me home. She sat reading her English homework (Wuthering Heights) and then played with my Palm for a bit. When it was all finished they strapped a new pump on me and off we went. It was actually quite late today, about 18:50, when we finished.
I called a cab from the local taxi point and by the time I got the entrance someone else had taken it. I called another cab from the local taxi point, at the same time another patient called a cab, her cab arrived and mine never arrived. Finally I used my normal taxi company (Taxi G7) and got a cab in about 10 minutes. But it was still about 19:20 before we were on the way home.
Desney had dinner just about waiting for us when we got home. We had chicken and salad and Desney made me some extra pasta and pesto so I’d have something good and solid in me to prepare for tomorrow’s treatment.
The chemo definitely knocks me for a loop for a while afterwards. Slightly dizzy and definitely drowsy and if I get up too quick from a sitting position the world turns without me. It’s almost like being ever so slightly drunk or tipsy without the pleasure of the alcohol and, so far, without the pains of a hangover.
This is the good period. I am not in any real pain. I can eat solid foods and drink what I want. The treatments don’t actually hurt and I’m getting through day by day. I’m just waiting as I know, in the back of my mind, that the cumulated effects of the treatment, in a couple of weeks’ time, are not going to be enjoyable. But I am living for the moment at the moment and enjoying what pleasurable time I have left…
It was certainly nice to spend an entire morning without worrying about someone showing up at 11:30 to stick me with a needle. I actually had enough energy to catch up with a bit of e-mail. I mostly went over what is going on in APESA (the Anglophone section parents’ association at Jessica's school of which I am supposed to be the president). There’s a lot happening there at the moment and it felt good to be at least a bit involved and kept up to date.
I went out to grab a sandwich at the bakery and pickup some more medicine from the chemists. Unfortunately the chemist closes at lunch time, which I always find ridiculous, and the bakery didn’t have anything interesting left. I therefore strolled down to my local café / bar and had a sandwich there. It felt good standing up at the bar at my “usual” like a normal person. They hopefully couldn’t see the pump hidden under my shirt and under my jacket. I’m sure they noticed the scar. But no one said anything. They may have noticed the x-ray therapy markings on my chest but I doubt anyone looked that closely. I was a good feeling to stand at the bar and have lunch like others. The barman (Pierrot) was a bit shocked when he proposed me my usual choice (panache or Côtes) and I had a coke instead. A panaché is a half-half mixture of beer and lemonade and a Côtes is short for a glass of red Côtes de Rhône (Rhône valley red wine). He must have thought I had too much to drink the night before. The coke tasted awful but the sandwich tasted OK. I actually had a coffee which tasted pretty good as well.
Back home and off to the clinic. Today was my first x-ray therapy. It didn’t take long and it certainly didn’t hurt. It takes longer to strap me in and get me in to position than it does to actually carry out the treatment. They shot me with 3 sets of rays. It doesn’t hurt but I can feel warmth where they shoot. They did one on the left, one on the right and one in the middle. From how it felt it appears as though they’re starting from the bottom and working their way up. About five minutes later they were unstrapping me and sending me off to chemo.
Chemo was just like yesterday. They asked me repeatedly how I was, how I slept and if I had any nausea, constipation or that sort of thing. No nausea and I’m dealing with the other problem. They disconnected the pump and connected the “cocktail”. I had my eyes closed so I didn’t see really notice what was going on. I had a new young nurse who I fear was a bit underexperienced. Later on, when they changed the bag the first time, I realized that she had done things in the wrong order. Normally they dilute me with this hydration bag first, then antinausea medication, then the chemo and finally another dilution. Each dilution takes an hour so they inject the antinausea medication just before the chemo so as to enforce the effect. The nurse started me with the antinausea medication today before the dilution. Yesterday’s nurse, Barbara, reassured me that it should not be a problem. I was reassured at about 85%... we’ll see how it goes.
I lied back and listened to my relaxing music and then a bit of Modern Jazz Quartet and finally a bit of James Carter. About an hour before everything was finished Jessica showed up to keep me company and accompany me home. She sat reading her English homework (Wuthering Heights) and then played with my Palm for a bit. When it was all finished they strapped a new pump on me and off we went. It was actually quite late today, about 18:50, when we finished.
I called a cab from the local taxi point and by the time I got the entrance someone else had taken it. I called another cab from the local taxi point, at the same time another patient called a cab, her cab arrived and mine never arrived. Finally I used my normal taxi company (Taxi G7) and got a cab in about 10 minutes. But it was still about 19:20 before we were on the way home.
Desney had dinner just about waiting for us when we got home. We had chicken and salad and Desney made me some extra pasta and pesto so I’d have something good and solid in me to prepare for tomorrow’s treatment.
The chemo definitely knocks me for a loop for a while afterwards. Slightly dizzy and definitely drowsy and if I get up too quick from a sitting position the world turns without me. It’s almost like being ever so slightly drunk or tipsy without the pleasure of the alcohol and, so far, without the pains of a hangover.
This is the good period. I am not in any real pain. I can eat solid foods and drink what I want. The treatments don’t actually hurt and I’m getting through day by day. I’m just waiting as I know, in the back of my mind, that the cumulated effects of the treatment, in a couple of weeks’ time, are not going to be enjoyable. But I am living for the moment at the moment and enjoying what pleasurable time I have left…
Monday, October 17, 2005
Day 1
I would love to say that today went better than expected... and in many ways it didn't. But of course someone out there had to continue throwing a few surprises at me...
Took forever getting myself ready again this morning. But I looked forward to having my stitches out from the PAC so as to take a proper shower again. The (new) nurse showed up 45 minutes late and just in time to fit in with the rest of my busy schedule. I had taken my antinausea medication in the morning and, more importantly, my relaxation medication (Xanax) as well which I hoped would chill me out for both the stitches and the chemo. It certainly didn't do a great job for the stitches. She gave me the injection, in my thigh, first and quite quickly. Then got to work on the stitches. It was one long big stitch and she had to do a bit of tugging and yanking to get the damn thing out which was not enjoyable but not entirely her fault.
Once the stitches were out I was able to slap on the aesthesia path (Emla Patch) and have a quick lunch and off we went. Desney accompanied me today.
We got to the clinic on time and everyone in the chemotherapy department was really very pleasant. We were let in to the chemo room together. It actually looks like a "cave" (French basement jazz club) but with much brighter lighting. The room is a semi-circle with the "bar" in the middle where the nurses are and with wonderfully comfortable reclining chairs against the round walls.
They set me down in one of the chairs and a nurse (Barbara) came to explain everything and get started. This is when the surprises started. She went over my particular internal chemotherapy as regards what chemicals they'd be using, when and what the effects (positive and negative) were of each. First surprise was that this part of the treatment takes 3 hours each day as they run dilution fluid through me for an hour, antinausea medication for about a half an hour, the actual chemo chemical for another half hour and another dilution fluid for an hour. She explained the possible side effects of this particular chemical (fatigue, risk of kidney problems - need to drink 3 litres of water a day to avoid this, fatigue, nausea - treated by the various medications, constipation - also treated with medication, etc.). She then hit me with the second surprise. I knew I was having two different chemo treatments but I had been led to understand that they were going to be a sort of "cocktail mix" and administered during the chemo treatment at the clinic. My second chemo treatment is administered by a pump which remains attached to me, via the PAC, for 24 hours. They attach the pump to the inside of my shirt with a safety pin and they change the pump each day. I therefore have to spend all day with this big plastic pump (about 10 cm) clanging about my chest. It slowly administers the chemo product over 22 to 24 hours. There goes my dream of a proper shower. On the fourth day they remove the pump. From what I can see there is one positive aspect in that because the pump remains connected to the catheter it looks like they don't have to inject me every day and just replace the pump with the chemo connection.
She explained some of the side effects of this second chemical (fatigue again, anaemia - basically more fatigue, reduced white blood cells - risk of infection, ...). She told us about what to look out for (mouth sores, fever, ...) which should be told to a doctor when it happens. She also told us a lot of about the "real" effects of the radiation therapy in combination with chemo as they see it often. Her explanation basically went along with what we'd already heard and confirmed most of the bad news (burning on the skin outside the neck, difficulty to swallow requiring non-solid foods, less saliva and less taste). However she also appeared to believe that all of those symptoms would go away with time.
She was more helpful and provided more detailed and gentle explanation than all of the doctors we've met up to now.
Although Desney stayed with me the whole time, sitting in a much more uncomfortable chair reading her book and doing her puzzles, I kicked back with my iPod and my headphones and felt like I was on another planet. Thank God, or whoever as he and I are not communicating at the moment, for the iPod as it truly made it a more than bearable and every so enjoyable experience. With the relaxing music in both ears and my eyes closed I was in a different reality. I would only realise where I was when I would open my eyes to go to the toilet, accompanying my "date" (perf machine), every 45 minutes or so.
Once it was all over, and another nurse had strapped the pump on me, we took a taxi home where I truly started feeling exhausted.
So far so good. One day down and 55 to go... and then just getting this stuff out of my system...
Took forever getting myself ready again this morning. But I looked forward to having my stitches out from the PAC so as to take a proper shower again. The (new) nurse showed up 45 minutes late and just in time to fit in with the rest of my busy schedule. I had taken my antinausea medication in the morning and, more importantly, my relaxation medication (Xanax) as well which I hoped would chill me out for both the stitches and the chemo. It certainly didn't do a great job for the stitches. She gave me the injection, in my thigh, first and quite quickly. Then got to work on the stitches. It was one long big stitch and she had to do a bit of tugging and yanking to get the damn thing out which was not enjoyable but not entirely her fault.
Once the stitches were out I was able to slap on the aesthesia path (Emla Patch) and have a quick lunch and off we went. Desney accompanied me today.
We got to the clinic on time and everyone in the chemotherapy department was really very pleasant. We were let in to the chemo room together. It actually looks like a "cave" (French basement jazz club) but with much brighter lighting. The room is a semi-circle with the "bar" in the middle where the nurses are and with wonderfully comfortable reclining chairs against the round walls.
They set me down in one of the chairs and a nurse (Barbara) came to explain everything and get started. This is when the surprises started. She went over my particular internal chemotherapy as regards what chemicals they'd be using, when and what the effects (positive and negative) were of each. First surprise was that this part of the treatment takes 3 hours each day as they run dilution fluid through me for an hour, antinausea medication for about a half an hour, the actual chemo chemical for another half hour and another dilution fluid for an hour. She explained the possible side effects of this particular chemical (fatigue, risk of kidney problems - need to drink 3 litres of water a day to avoid this, fatigue, nausea - treated by the various medications, constipation - also treated with medication, etc.). She then hit me with the second surprise. I knew I was having two different chemo treatments but I had been led to understand that they were going to be a sort of "cocktail mix" and administered during the chemo treatment at the clinic. My second chemo treatment is administered by a pump which remains attached to me, via the PAC, for 24 hours. They attach the pump to the inside of my shirt with a safety pin and they change the pump each day. I therefore have to spend all day with this big plastic pump (about 10 cm) clanging about my chest. It slowly administers the chemo product over 22 to 24 hours. There goes my dream of a proper shower. On the fourth day they remove the pump. From what I can see there is one positive aspect in that because the pump remains connected to the catheter it looks like they don't have to inject me every day and just replace the pump with the chemo connection.
She explained some of the side effects of this second chemical (fatigue again, anaemia - basically more fatigue, reduced white blood cells - risk of infection, ...). She told us about what to look out for (mouth sores, fever, ...) which should be told to a doctor when it happens. She also told us a lot of about the "real" effects of the radiation therapy in combination with chemo as they see it often. Her explanation basically went along with what we'd already heard and confirmed most of the bad news (burning on the skin outside the neck, difficulty to swallow requiring non-solid foods, less saliva and less taste). However she also appeared to believe that all of those symptoms would go away with time.
She was more helpful and provided more detailed and gentle explanation than all of the doctors we've met up to now.
Although Desney stayed with me the whole time, sitting in a much more uncomfortable chair reading her book and doing her puzzles, I kicked back with my iPod and my headphones and felt like I was on another planet. Thank God, or whoever as he and I are not communicating at the moment, for the iPod as it truly made it a more than bearable and every so enjoyable experience. With the relaxing music in both ears and my eyes closed I was in a different reality. I would only realise where I was when I would open my eyes to go to the toilet, accompanying my "date" (perf machine), every 45 minutes or so.
Once it was all over, and another nurse had strapped the pump on me, we took a taxi home where I truly started feeling exhausted.
So far so good. One day down and 55 to go... and then just getting this stuff out of my system...
Saturday, October 15, 2005
Last chance for company
Busy day... the kids got off to school, Desney off to a school meeting (which I normally would have attended) and I went to the market to do a small part of the fresh food shopping. Just the buthcher and the Italian market...
My nurse showed up a bit early and we got through another injection as usual.
In the afternoon I took Alexandra to La Défense to get some new shoes for her to wear in the grueling mud of camp in England. It was a great feeling to drive again. I almost felt human. The best part of the experience was actually feeling a bit more "in control" again. Yet another day without having to go to the Clinic and a day in which anything I did was because I wanted to and knew what I was doing. This is very different than so many of my days where I don't know what's going to happen to me or who is going to do what to me... whether I want them to or not.
We got Alex a very cool pair of sneakers (Rip Curl). While we were there I also picked up a couple of relaxation CDs, from Nature et Découvertes, which I will add to my iPod Shuffle to listen to during chemotherapy. It's amazing how relaxed one becomes just walking in to this store...
When we got home Jessica was on the phone with one of her friends, as usual, and we casually heard that her father was in town. Her father lives in Italy and we never know when he's going to be in Paris. We immediately invited the two of them over for dinner taking advantage of the rare occurence to have him around as well as probably one of the last times I'm going to want company over for a while... they accepted.
Dinner was nothing special. Just something Desney whipped up for a regular Saturday night. I threw a bottle of Champagne in to the freezer as soon as they had accepted our invitation. We had the Champagne (Pol Roger) with apéritif. Unfortunately the Champagne tasted horrible to me (again). But I enjoyed the crisps, olives, pretzels and such which I hadn't had for a while. Desney came up with a shrimp and avocado salad starter which was very nice which we had with a wonderful Morgon '99 from the Trichards. Again the wine tasted awful to me. But I know from the bouquet that it was quite good. Dessert was a Charlotte au poire which Desney had quickly bought in the afternoon and we had a sweet white from the Loire Valley (Château de Breuil). The wine smelled absolutely wonderful and everyone (else) seemed to enjoy it quite a lot. It was just such a great feeling to have friends over and have a good meal. Another simple pleasure of life...
My nurse showed up a bit early and we got through another injection as usual.
In the afternoon I took Alexandra to La Défense to get some new shoes for her to wear in the grueling mud of camp in England. It was a great feeling to drive again. I almost felt human. The best part of the experience was actually feeling a bit more "in control" again. Yet another day without having to go to the Clinic and a day in which anything I did was because I wanted to and knew what I was doing. This is very different than so many of my days where I don't know what's going to happen to me or who is going to do what to me... whether I want them to or not.
We got Alex a very cool pair of sneakers (Rip Curl). While we were there I also picked up a couple of relaxation CDs, from Nature et Découvertes, which I will add to my iPod Shuffle to listen to during chemotherapy. It's amazing how relaxed one becomes just walking in to this store...
When we got home Jessica was on the phone with one of her friends, as usual, and we casually heard that her father was in town. Her father lives in Italy and we never know when he's going to be in Paris. We immediately invited the two of them over for dinner taking advantage of the rare occurence to have him around as well as probably one of the last times I'm going to want company over for a while... they accepted.
Dinner was nothing special. Just something Desney whipped up for a regular Saturday night. I threw a bottle of Champagne in to the freezer as soon as they had accepted our invitation. We had the Champagne (Pol Roger) with apéritif. Unfortunately the Champagne tasted horrible to me (again). But I enjoyed the crisps, olives, pretzels and such which I hadn't had for a while. Desney came up with a shrimp and avocado salad starter which was very nice which we had with a wonderful Morgon '99 from the Trichards. Again the wine tasted awful to me. But I know from the bouquet that it was quite good. Dessert was a Charlotte au poire which Desney had quickly bought in the afternoon and we had a sweet white from the Loire Valley (Château de Breuil). The wine smelled absolutely wonderful and everyone (else) seemed to enjoy it quite a lot. It was just such a great feeling to have friends over and have a good meal. Another simple pleasure of life...
Friday, October 14, 2005
A normal Friday
Today was the first day in quite some time when I didn't have to go back to the clinic.
I still had to get my midday injection of course. But I'm almost getting used to that. The nurse is so nice that I get over the pain relatively quickly. Was in the right side of the stomach today.
After lunch I headed off to the FNAC to do some shopping. I knew I needed to replace my iPod as my current one only lasts for about 45 minutes. The iPod is going to be absolutely vital to me during chemotherapy. After having spoken to a friend of ours who has been through it she highly recommends having something to listen to, read, play with, etc. so as to keep your mind off of it. I couldn't agree more. As the chemotherapy injection lasts about 2 hours or more I need a working iPod. I would have loved to just buckled down and bought the new iPod video but it's so new it's not available here yet. I didn't want to spend a fortune on a different iPod as I know I'll be getting the iPod Video probably as soon as it's available. But I also had these FNAC gift certificates, which my parents' association (APESA) had given me, burning a hole in my pocket. I bought the iPod Shuffle and some other stuff and headed home.
Believe it or not I also had lunch at McDonalds. Now many of you, including myself, may ask "Why would you possibly eat at McDonalds in Paris (France) of all places?" I can only answer... "Because I can". This was probably my last hamburger for quite some time to come and I wanted to enjoy the experience while I could. Rest assured I am continuing to eat wonderful French food every day in preparation for those days when I can no longer get the solids down. But this was just something I had to do. Of course it is interesting, and ever so slightly depressing, that I could taste this junk food without any difficulty while I can not taste wonderful meals (steak, wine, pork, ...). Apparently articial chemicals are easier to taste than natural foods and flavours. I felt only ever so slighly embarassed. However if there was a good New York Deli in the neighbourhood I certainly would have gone there instead!
Once I got home I of course charged up the iPod Shuffle and played with it for a while. I started making playlists to use during chemo...
In the evening we had Pizza Hut and watched Finding Neverland. I gotta say... I still haven't seen a bad Johnny Depp movie!
I still had to get my midday injection of course. But I'm almost getting used to that. The nurse is so nice that I get over the pain relatively quickly. Was in the right side of the stomach today.
After lunch I headed off to the FNAC to do some shopping. I knew I needed to replace my iPod as my current one only lasts for about 45 minutes. The iPod is going to be absolutely vital to me during chemotherapy. After having spoken to a friend of ours who has been through it she highly recommends having something to listen to, read, play with, etc. so as to keep your mind off of it. I couldn't agree more. As the chemotherapy injection lasts about 2 hours or more I need a working iPod. I would have loved to just buckled down and bought the new iPod video but it's so new it's not available here yet. I didn't want to spend a fortune on a different iPod as I know I'll be getting the iPod Video probably as soon as it's available. But I also had these FNAC gift certificates, which my parents' association (APESA) had given me, burning a hole in my pocket. I bought the iPod Shuffle and some other stuff and headed home.
Believe it or not I also had lunch at McDonalds. Now many of you, including myself, may ask "Why would you possibly eat at McDonalds in Paris (France) of all places?" I can only answer... "Because I can". This was probably my last hamburger for quite some time to come and I wanted to enjoy the experience while I could. Rest assured I am continuing to eat wonderful French food every day in preparation for those days when I can no longer get the solids down. But this was just something I had to do. Of course it is interesting, and ever so slightly depressing, that I could taste this junk food without any difficulty while I can not taste wonderful meals (steak, wine, pork, ...). Apparently articial chemicals are easier to taste than natural foods and flavours. I felt only ever so slighly embarassed. However if there was a good New York Deli in the neighbourhood I certainly would have gone there instead!
Once I got home I of course charged up the iPod Shuffle and played with it for a while. I started making playlists to use during chemo...
In the evening we had Pizza Hut and watched Finding Neverland. I gotta say... I still haven't seen a bad Johnny Depp movie!
Thursday, October 13, 2005
A real mixup which turned out well...
Tonight was my final clinical examination before starting treatment on Monday.
To summarise: Last Thursday I met Dr. Kanoui for the first time. Up until our meeting each doctor had said to me that I would definitely have to have x-ray therapy but that I would most likely not need chemotherapy. I knew that x-ray therapy was going to be tough. But I was able to console myself with the constant phrase "at least it's not chemo". During our meeting with Dr. Kanoui he explained that I needed to have chemotherapy and x-ray therapy together. He answered a certain number of our questions, reluctantly, and made the appointments for the x-ray therapy preparations. I therefore had an appointment on Tuesday for the x-ray therapy mask fitting, on Wednesday for the x-ray therapy simulation and on Thursday for a clinical exam with him. He called me the following day (Friday) to confirm that the group of doctors agreed, including Dr. Hagege, that chemotherapy was necessary. After I confirmed it with my doctor (Dr. Girard), who suddenly agreed with the oncologists, I agreed. Dr. Kanoui therefore set up the appointment for the operation implanting the "PAC" in my chest to facilitate the chemotherapy. We said we would talk about the rest at our exam on Thursday.
I went through Monday, Tuesday and Wednesday like a good patient. I confirmed with his assistant, who I saw on both Tuesday and Wednesday, my remaining appointments including tonight's clinical exam.
All of this to say: Desney and I arrived on time for my appointment. We were told that my appointment was to start treatment immediately and that Dr. Kanoui was not there. His assistant was not there either. However I had an appointment to start x-ray therapy. I told them that I was not starting treatment until after discussion with Dr. Kanoui and although they had apparently prepared me physically I was not yet prepared psychologically as I had questions which needed answering. After much discussion back and forth they agreed to let me see a different oncologist and to cancel this evening's treatment appointment.
We sat down in the waiting room and I was very upset. I couldn't understand how they could possible have done this to me. How they could possibly have imagined that I would start treatment like this. I asked when I would be scheduled to see Dr. Kanoui again. I was told it would be next Wednesday. That would be my third day of chemotherapy. I was therefore expected to start chemotherapy with no preparation whatsoever and no prescription for the necessary medication.
After a long wait we were ushered in to meet Dr. Mammar. What a shock. He was wonderful! He sat down and gently, calmly and kindly answered all of our questions including some we hadn't even asked yet as we expected we would have been told. We learned quite a lot. It was a true pleasure to talk with him. It turns out he's from Burgundy which we found out during the wine discussion which came in the middle of everything else...
Dr. Mammar first explained about the effects of x-ray therapy both in the short-term, long-term and forever. He is the first doctor to explain that this therapy is going to have a couple of permanent effects on me. At the minimum my neck is going to be harder and I will no longer be able to turn my head past my shoulder. It will have slightly less freedom of movement than before. It will not be debilitating but slightly limiting and it will be permanent. The x-ray therapy is going to severely affect my salivary glands. During the treatment I am going to have great difficulty swallowing and it is most likely that there will be a period during which I will not be able to eat solids. The permanent effect however is that I will have less saliva, and a dry mouth, for the rest of my life. It was at this point that I asked him about whether any of this will have any affect on my ability to taste. He started answering "well if you were a wine master..." and Desney and I both jumped in... "as a matter of fact... I am". We had a discussion about my interest in wine and how important this was to me. He too is a wine "amateur", especially growing up in Burgundy, and knows how important it can be. Unfortunately they do not have any information, yet, as regards the effects on fine-tasting capacities after the treatment. However I shouldn't count on tasting wine properly for at least a year. This was quite a blow. I have said most of my life that if there was ever a time a doctor said to me "you will live... but you'll have to stop drinking wine" I would reply "I'd rather die". I am now put before reality and am having to make another very sad choice. I'm going to have to live without wine for quite some time and just dream that my tasting capacities come back with time...
He explained the immediate effects of the x-ray therapy and he showed us pictures of what areas of my neck, chest and jaw are going to be treated. The treatment is going to be very "toxic", aggressive and quite painful. The chemotherapy is actually going to increase the negative aspects of the x-ray therapy effects. Most of that I knew already... and I also knew there wasn't anything I could do about it. The pain I'm going to have to learn to live with and get through. Easy to say at the moment...
We talked about the chemotherapy itself and he explained how it works. They'll inject it directly in to my "PAC" and I'll sit around for 2 hours while it is slowly injected through my body. I told him how worried I was about the nausea and vomiting and how sensitive my stomach is to stress and worry. I gave him a brief history of how when I get upset my stomach is the first part of my body to get upset. After a bit of discussion he prescribed the anti-nausea drugs and after explaining that I'm nauseous even before the operations/procedures start he prescribed another anti-nausea drug I can take beforehand. This is exactly what I needed. I felt very reassured.
He was also kind enough, eventually, to prescribe the patches often used on children to slightly anesthetise the skin prior to injections.
We had a bit of a talk about the dental situation and he was the first to explain that I will have to use a "goutière" (a mold which fits my teeth and which distributes extra fluoride) in my mouth for about 3 minutes a day FOR THE REST OF MY LIFE. The x-ray therapy is going to weaken my teeth and it mustn't create any infection which could touch the bones themselves...
As this meeting was such a radical change from our experiences with Dr. Kanoui I outright asked him if I could change oncologists and get him to follow me instead. This was obviously politically incorrect and he sidestepped the question. However I will be able to see him again and I will make sure I do so on the days he is at the clinic.
After all of this I agreed to a final session of pre-x-ray therapy verification where they take x-rays of me in the various positions they will use on the days of treatment. It took about 10-15 minutes and everyone was happy afterwards.
I felt much more reassured when I left and even a bit prepared to start the treatment on Monday. We went to the two departments (x-ray therapy and chemotherapy) and got my first appointment dates and times.
Got home late...
Now I have 3 days where the "only" treatment I have is my daily injection and I do not have to go back to the clinic until after the weekend!
To summarise: Last Thursday I met Dr. Kanoui for the first time. Up until our meeting each doctor had said to me that I would definitely have to have x-ray therapy but that I would most likely not need chemotherapy. I knew that x-ray therapy was going to be tough. But I was able to console myself with the constant phrase "at least it's not chemo". During our meeting with Dr. Kanoui he explained that I needed to have chemotherapy and x-ray therapy together. He answered a certain number of our questions, reluctantly, and made the appointments for the x-ray therapy preparations. I therefore had an appointment on Tuesday for the x-ray therapy mask fitting, on Wednesday for the x-ray therapy simulation and on Thursday for a clinical exam with him. He called me the following day (Friday) to confirm that the group of doctors agreed, including Dr. Hagege, that chemotherapy was necessary. After I confirmed it with my doctor (Dr. Girard), who suddenly agreed with the oncologists, I agreed. Dr. Kanoui therefore set up the appointment for the operation implanting the "PAC" in my chest to facilitate the chemotherapy. We said we would talk about the rest at our exam on Thursday.
I went through Monday, Tuesday and Wednesday like a good patient. I confirmed with his assistant, who I saw on both Tuesday and Wednesday, my remaining appointments including tonight's clinical exam.
All of this to say: Desney and I arrived on time for my appointment. We were told that my appointment was to start treatment immediately and that Dr. Kanoui was not there. His assistant was not there either. However I had an appointment to start x-ray therapy. I told them that I was not starting treatment until after discussion with Dr. Kanoui and although they had apparently prepared me physically I was not yet prepared psychologically as I had questions which needed answering. After much discussion back and forth they agreed to let me see a different oncologist and to cancel this evening's treatment appointment.
We sat down in the waiting room and I was very upset. I couldn't understand how they could possible have done this to me. How they could possibly have imagined that I would start treatment like this. I asked when I would be scheduled to see Dr. Kanoui again. I was told it would be next Wednesday. That would be my third day of chemotherapy. I was therefore expected to start chemotherapy with no preparation whatsoever and no prescription for the necessary medication.
After a long wait we were ushered in to meet Dr. Mammar. What a shock. He was wonderful! He sat down and gently, calmly and kindly answered all of our questions including some we hadn't even asked yet as we expected we would have been told. We learned quite a lot. It was a true pleasure to talk with him. It turns out he's from Burgundy which we found out during the wine discussion which came in the middle of everything else...
Dr. Mammar first explained about the effects of x-ray therapy both in the short-term, long-term and forever. He is the first doctor to explain that this therapy is going to have a couple of permanent effects on me. At the minimum my neck is going to be harder and I will no longer be able to turn my head past my shoulder. It will have slightly less freedom of movement than before. It will not be debilitating but slightly limiting and it will be permanent. The x-ray therapy is going to severely affect my salivary glands. During the treatment I am going to have great difficulty swallowing and it is most likely that there will be a period during which I will not be able to eat solids. The permanent effect however is that I will have less saliva, and a dry mouth, for the rest of my life. It was at this point that I asked him about whether any of this will have any affect on my ability to taste. He started answering "well if you were a wine master..." and Desney and I both jumped in... "as a matter of fact... I am". We had a discussion about my interest in wine and how important this was to me. He too is a wine "amateur", especially growing up in Burgundy, and knows how important it can be. Unfortunately they do not have any information, yet, as regards the effects on fine-tasting capacities after the treatment. However I shouldn't count on tasting wine properly for at least a year. This was quite a blow. I have said most of my life that if there was ever a time a doctor said to me "you will live... but you'll have to stop drinking wine" I would reply "I'd rather die". I am now put before reality and am having to make another very sad choice. I'm going to have to live without wine for quite some time and just dream that my tasting capacities come back with time...
He explained the immediate effects of the x-ray therapy and he showed us pictures of what areas of my neck, chest and jaw are going to be treated. The treatment is going to be very "toxic", aggressive and quite painful. The chemotherapy is actually going to increase the negative aspects of the x-ray therapy effects. Most of that I knew already... and I also knew there wasn't anything I could do about it. The pain I'm going to have to learn to live with and get through. Easy to say at the moment...
We talked about the chemotherapy itself and he explained how it works. They'll inject it directly in to my "PAC" and I'll sit around for 2 hours while it is slowly injected through my body. I told him how worried I was about the nausea and vomiting and how sensitive my stomach is to stress and worry. I gave him a brief history of how when I get upset my stomach is the first part of my body to get upset. After a bit of discussion he prescribed the anti-nausea drugs and after explaining that I'm nauseous even before the operations/procedures start he prescribed another anti-nausea drug I can take beforehand. This is exactly what I needed. I felt very reassured.
He was also kind enough, eventually, to prescribe the patches often used on children to slightly anesthetise the skin prior to injections.
We had a bit of a talk about the dental situation and he was the first to explain that I will have to use a "goutière" (a mold which fits my teeth and which distributes extra fluoride) in my mouth for about 3 minutes a day FOR THE REST OF MY LIFE. The x-ray therapy is going to weaken my teeth and it mustn't create any infection which could touch the bones themselves...
As this meeting was such a radical change from our experiences with Dr. Kanoui I outright asked him if I could change oncologists and get him to follow me instead. This was obviously politically incorrect and he sidestepped the question. However I will be able to see him again and I will make sure I do so on the days he is at the clinic.
After all of this I agreed to a final session of pre-x-ray therapy verification where they take x-rays of me in the various positions they will use on the days of treatment. It took about 10-15 minutes and everyone was happy afterwards.
I felt much more reassured when I left and even a bit prepared to start the treatment on Monday. We went to the two departments (x-ray therapy and chemotherapy) and got my first appointment dates and times.
Got home late...
Now I have 3 days where the "only" treatment I have is my daily injection and I do not have to go back to the clinic until after the weekend!
Wednesday, October 12, 2005
Marked
The nurse came on time and Alexandra got to meet her today. A jab in the thigh this time and away she went.
Back to the clinic this afternoon for my x-ray therapy simulation. I was under the impression this was just going to be taking a few more measures and aiming the lights as though they were x-rays. But of course... it had to be a bit more complicated.
They lie me down on the bed which goes in to the scanner and they strap my mask on my face and connect it to the bed. I am therefore pinned to the bed. I am then told to not move and that the measuresements are as precise as 1 millimetre. I am then, kindly, told that it will "only" last THIRTY MINUTES. Thirty minutes of not moving one millimetre. I was sweating buckets. It's amazing how much physical work it is to not move. Then of course the mind desperately wants to move. Not because it needs to. But just because someone told me not to. It's like when you look over a really high ledge and there's a tiny little part of you that wants to jump. There was this reasonably big part of me that wanted to shake and nod my head up and down and back and forth. But I didn't.
As he took measures he would come back in and draw on my mask with a smelly marker. I couldn't see what he was doing as my eyes were closed under the mask. Then he started drawing on my chest. He would draw some sort of symbol and then cover it up with a plastic transpared sort of plaster. That was OK. I was prepared for that. Of course he said he was "almost finished" long before he was actually finished. Finally he comes at me and says now I am going to tatoo you and it will sting. I looked up and said "are you kidding?". He said no and that it was no big deal. I haven't quite figured out yet why cutting me up and picking me with needles is always such a minor aspect to the nurses and doctors that they don't even think it needs mentioning let alone compassion. He then proceeded to tatoo a black cross right in the middle of my chest. Not fun.
I was finally allowed to go and went home to lie down...
I had always said I would never ever get a tatoo. I always thought "pay someone to hurt me with tiny needles and inject ink in to my body with an image that will remain permanently in my skin? ... no thanks"
Now I am the not so proud owner of a cross tatoo in the middle of my chest. The Catholic side of my family is going to be so proud. I, on the other hand, would have gladly abstained.
Back to the clinic this afternoon for my x-ray therapy simulation. I was under the impression this was just going to be taking a few more measures and aiming the lights as though they were x-rays. But of course... it had to be a bit more complicated.
They lie me down on the bed which goes in to the scanner and they strap my mask on my face and connect it to the bed. I am therefore pinned to the bed. I am then told to not move and that the measuresements are as precise as 1 millimetre. I am then, kindly, told that it will "only" last THIRTY MINUTES. Thirty minutes of not moving one millimetre. I was sweating buckets. It's amazing how much physical work it is to not move. Then of course the mind desperately wants to move. Not because it needs to. But just because someone told me not to. It's like when you look over a really high ledge and there's a tiny little part of you that wants to jump. There was this reasonably big part of me that wanted to shake and nod my head up and down and back and forth. But I didn't.
As he took measures he would come back in and draw on my mask with a smelly marker. I couldn't see what he was doing as my eyes were closed under the mask. Then he started drawing on my chest. He would draw some sort of symbol and then cover it up with a plastic transpared sort of plaster. That was OK. I was prepared for that. Of course he said he was "almost finished" long before he was actually finished. Finally he comes at me and says now I am going to tatoo you and it will sting. I looked up and said "are you kidding?". He said no and that it was no big deal. I haven't quite figured out yet why cutting me up and picking me with needles is always such a minor aspect to the nurses and doctors that they don't even think it needs mentioning let alone compassion. He then proceeded to tatoo a black cross right in the middle of my chest. Not fun.
I was finally allowed to go and went home to lie down...
I had always said I would never ever get a tatoo. I always thought "pay someone to hurt me with tiny needles and inject ink in to my body with an image that will remain permanently in my skin? ... no thanks"
Now I am the not so proud owner of a cross tatoo in the middle of my chest. The Catholic side of my family is going to be so proud. I, on the other hand, would have gladly abstained.
Tuesday, October 11, 2005
Sometimes things are actually easier than they're supposed to be
I was able to get some work done this morning which felt good.
My new nurse showed up at 11:40 to give me an injection in my stomach. She's very nice, kind and gentle and not bad looking which makes the experience more enjoyable. However it definitely hurt more today than yesterday. Seeing as though I hadn't had the pre-anesthesia they gave me before the operation as well as the side effects from the local anesthesia helping me out it's quite obvious as to why it wasn't the same. Duh. I lied down for about a half an hour and got over it.
Back to the clinic this afternoon for a scanner and mask fitting. I wasn't sure how they were going to hurt me this time. But I was sure they were going to somehow. The scanner assistant was very nice. I had to lie down, as usual, and they put this sort of cold, wet plastic mask over me and taped it down on the sides and attached it to the scanner bench. They then made a hole for me to breathe through (mouth and nose). They put me in to position and told me not to move until it was over. Not moving for 10 minutes while the scanner buzzed round and round my head was not easy. But as my eyes were closed, as usual, I practically fell asleep.
I finally felt the bench rise up and the assistant said it was over. I expected her to have to give me some sort of antibiotic or antisomething injection before I left. She said I could go. I didn't need to be told that twice. I got out, calmly but quickly, and found myself out on the street feeling quite qood.
I took the bus back home and relaxed for the rest of the afternoon in amazement that it was actually possible to go to that clinic without them hurting me. I know I will no longer feel that way as of next week but it was definitely reassuring...
Monday, October 10, 2005
Things are just never as easy as they're supposed to be
I actually got a bit of work done this morning which was a good feeling.Then I went back to the clinic for them to put this thing in my body.
I got up to the 4th floor and suddenly realised I was in for real surgery. I know the drill. The shower with the disinfectant stuff (betadine), the medical gown that never closes properly and gives everyone a constant look at my ass, the funny paper shower cap, the warm socks with the paper shoes. I knew what that meant and I wasn't pleased. Dr. Kanoui had sold this to me as such a minor thing. In it goes and that's it.
They gave me a blue pill which was supposed to calm me down. It takes a lot more than one pill to calm down a nervous, frightened and upset New Yorker!
They took me up to the operating room in a wheelchair and then up on the table. I knew it was going to be local anesthesia but I was really hoping I wasn't going to get any injections. Of course I hadn't thought it through. Of course there is no other logical way of getting the anesthesia in to the area. But logic had no role in my thoughts at the time. I just wanted one procedure, finally, to be easy and painless. This wasn't. This was probably the first time that one of the procedures was actually worse than I had imagined. That's saying something because I have some pretty vivid and imaginative nightmares lately.
They shot me up with the anesthesia, which I definitely felt, and then they covered me up so I could just look at the wall. The doctor kept asking "How are you doing?". How the hell am I supposed to answer that question? I'm lying there, wide awake, with my chest open and in much more pain that I thought I would be. What am I going to say? "Yeah, I'm fine. Having the time of my life. Put on some music and I'll dance..." I just kept lying "Ca va" (OK).
About 20 minutes in to the operation he started saying "presque fini" (almost finished) which brought a bit of hope to my day. It wasn't until 20 minutes later, when he was closing up, that I realised that this guy had an entirely different definition of "almost finished" than I did. Then when he was sewing up he said "quasiment fini" (completely finished) and I was ready to jump up and get the hell out of there. He then proceeded to continue with at least 3 more stitches as well as putting on the bandages.
Finally they let me sit up. All at once I wished I hadn't. I had already sweat a few buckets and now I started shivering. They wrapped me up, put me in the wheelchair and sent me back to the pre-op / post-op rooms. Here I learned that the roller coaster ride was not quite over yet. They let me sit for a while and relax with my legs up. Then the nurse gave me my prescriptions. This was fine by me. Medication generally includes something to relieve the pain so I was pleased ot get my prescriptions. Then she starts explaining the prescription to me.
This first item is the tablet I'm going to give you right now. You don't need to take those any more. This next item is an injection you'll need to have once a day, every day, for the next seven days IN YOUR STOMACH. I looked at her and literally said "Are you kidding?!?!?!". She came back in about 10 minutes and gave me my first injection which covered me for the day. Believe it or not I did not actually thank her.
I got dressed, very slowly, and made my way downstairs. In the condition I was in they wouldn't let me go home alone. I didn't mind but they really could have let us know beforehand that I would need to be accompanied so we could have organised ourselves better. I called Desney on the phone and even though she had a very important deadline for 5 o'clock she was there in front of the clinic in 20 mintes. We got a cab home and I immediately took a painkiller (paracetamol and codeine).
Basically it feels like I've been shot. But it also feels like they forgot to take out the bullet. It's very strange having this weight inside my chest just above my right breast. I'm going to have to get used to it as it'll be there for another 2 months when I get to re-experience today's adventure in reverse (surgical removal of the device).
In the mean time I get to take off the bandages tomorrow morning and a nurse will come and give ma jab every day and then she'll take out the stitches next Monday.
Now I've got pain on both sides of my body and I no longer trust any member of the medical profession. Tomorrow is supposed to be a simple scanner, without injection, and painless.
Yeah... right.
Saturday, October 08, 2005
A more than slight disappointment
After my very positive experience with the beer on Friday night I was looking forward to a bottle of wine.
Desney made a wonderful lamb stew and I broke open a really nice bottle of Henri Delagrange Volnay Premier Cru Clos des Chênes 1998. It was a bit young, definitely pink edges, but it looked good.
I poured myself a glass and almost immediately realised my problem. with the surgery and the medication or whatever my taste buds have been screwed. The wine tasted so bad I actually couldn't finished my glass. Desney and Jessica were able to appreciate the wine for the rest of the meal and I just watched with jealousy...
I was hoping that I had one week of reprieve where I could drink wine. I was planning on having a bottle of wine each night, with dinner, for the rest of the week until treatment started.
The week is now going to seem even longer...
Then again I think of how much I am going to appreciate a good glass of wine when my taste buds come back.
Desney made a wonderful lamb stew and I broke open a really nice bottle of Henri Delagrange Volnay Premier Cru Clos des Chênes 1998. It was a bit young, definitely pink edges, but it looked good.
I poured myself a glass and almost immediately realised my problem. with the surgery and the medication or whatever my taste buds have been screwed. The wine tasted so bad I actually couldn't finished my glass. Desney and Jessica were able to appreciate the wine for the rest of the meal and I just watched with jealousy...
I was hoping that I had one week of reprieve where I could drink wine. I was planning on having a bottle of wine each night, with dinner, for the rest of the week until treatment started.
The week is now going to seem even longer...
Then again I think of how much I am going to appreciate a good glass of wine when my taste buds come back.
The next step
Dr. Kanoui called. He has started the ball rolling and made the necessary appointments. He tends to talk to me like I know everything that's supposed to happen and like I know what he's talking about. Now is one of those times I wish I spent more attention to the teachers in biology classes rather than spending so much time with my head in the clouds.
He explained that they're going to insert a catheter under my skin under my clavicle. They'll be doing this under local anesthesia. This catheter will allow them to inject the chemo product every day without having to stick a needle in me daily. I suppose I should be grateful. However I wasn't really ready for this as I had not idea how all of this works. Then again... why should I.
He's scheduled the pose de l'appareil (installation of the mechanism) for Monday at 13:30. That's a bit sooner then I was psychologically ready for. But it gets it over with.
It's going to be a busy week for me and I"m going to get to know the clinic real well. Monday I've got this intervention under local anesthesia. Personally I would prefer they just knock me out completely but no one asked my opinion... as usual. Tuesday I go for a scanner, this time without injection, for them to start positioning this mask they use for the x-ray therapy. Wednesday I go back for them to simulate the x-ray therapy using the mask they will have made from the scan. Thursday I go for the clinical exam with Dr. Kanoui where we hopefully will get to ask him questions again. Desney will be coming with me to this exam.
Dr. Kanoui has confirmed that I'll be starting both chemotherapy and x-ray therapy on Monday (17/10). It's going to be a long week of waiting and anticipating...
He explained that they're going to insert a catheter under my skin under my clavicle. They'll be doing this under local anesthesia. This catheter will allow them to inject the chemo product every day without having to stick a needle in me daily. I suppose I should be grateful. However I wasn't really ready for this as I had not idea how all of this works. Then again... why should I.
He's scheduled the pose de l'appareil (installation of the mechanism) for Monday at 13:30. That's a bit sooner then I was psychologically ready for. But it gets it over with.
It's going to be a busy week for me and I"m going to get to know the clinic real well. Monday I've got this intervention under local anesthesia. Personally I would prefer they just knock me out completely but no one asked my opinion... as usual. Tuesday I go for a scanner, this time without injection, for them to start positioning this mask they use for the x-ray therapy. Wednesday I go back for them to simulate the x-ray therapy using the mask they will have made from the scan. Thursday I go for the clinical exam with Dr. Kanoui where we hopefully will get to ask him questions again. Desney will be coming with me to this exam.
Dr. Kanoui has confirmed that I'll be starting both chemotherapy and x-ray therapy on Monday (17/10). It's going to be a long week of waiting and anticipating...
Friday, October 07, 2005
Anne Roumanoff
We got the tickets quite some time ago. Anne Roumanoff coming to Asnières was just not something I could miss.
Anne Roumanoff is a stand-up comedian who Desney and I have watched for over 10 years now. Jessica's been watching her for the last couple of years on TV and she now has a TV program where she presents other stand-up comedians.
Jessica and I went for a quick dinner beforehand at the Japanese restaurant just across the street. Jessica loves Sushi. I don't know where she gets it from. We had a couple of huge plates of Sushi and Sashimi and I dared to order a beer. I had my first gulp with the expectation of a burning feeling down my entire throat and ready to ask for tea. To my great surprise it felt and tasted wonderful. So good in fact that I had another before the end of the meal. Sushi and a couple of cold Japanese beers (Kirin) another one of the simple pleasures of life. We spoke a bit about my medical news. She kept saying to look on the positive aspects (could be worse, there are people worse off elsewhere, best medical care in the world, still young, yadda yadda yadda). Sheer optimism... it's amazing how certain genes can jump a generation (Noni). We left just in time to make it to the performance. After getting back my credit card receipt I realised that dinner cost more than the show!
The show was great. It was basically a Best of Anne Roumanoff. She performed all of her classic sketches from the past 10 years or so. However she had modernised each one a bit and threw in a bit of improvisation and current information in each. It was a lot of fun and it felt great to laugh. It's generally impossible to translate jokes from one language to another... but... she had a few which I think might work:
---
You know why the Americans were so sure there were weapons of mass destruction in Iraq?
They had saved the invoices.
---
Millions of French are willing to spend 0.50 € to vote for which member of Star Academy (TV reality show) they want to vote off. But only 20% of them will go and vote, for free, for their politicians.
We should have a President Academy. You vote by SMS (textos) and we eliminate one member of the cabinet / parliament / assembly per week.
---
After the show I played tourist and got her to autograph her book which I proudly brought home. Jessica and I walked home and repeated jokes in the street. She remembered just as many as I did. It was great fun.
Anne Roumanoff is a stand-up comedian who Desney and I have watched for over 10 years now. Jessica's been watching her for the last couple of years on TV and she now has a TV program where she presents other stand-up comedians.
Jessica and I went for a quick dinner beforehand at the Japanese restaurant just across the street. Jessica loves Sushi. I don't know where she gets it from. We had a couple of huge plates of Sushi and Sashimi and I dared to order a beer. I had my first gulp with the expectation of a burning feeling down my entire throat and ready to ask for tea. To my great surprise it felt and tasted wonderful. So good in fact that I had another before the end of the meal. Sushi and a couple of cold Japanese beers (Kirin) another one of the simple pleasures of life. We spoke a bit about my medical news. She kept saying to look on the positive aspects (could be worse, there are people worse off elsewhere, best medical care in the world, still young, yadda yadda yadda). Sheer optimism... it's amazing how certain genes can jump a generation (Noni). We left just in time to make it to the performance. After getting back my credit card receipt I realised that dinner cost more than the show!
The show was great. It was basically a Best of Anne Roumanoff. She performed all of her classic sketches from the past 10 years or so. However she had modernised each one a bit and threw in a bit of improvisation and current information in each. It was a lot of fun and it felt great to laugh. It's generally impossible to translate jokes from one language to another... but... she had a few which I think might work:
---
You know why the Americans were so sure there were weapons of mass destruction in Iraq?
They had saved the invoices.
---
Millions of French are willing to spend 0.50 € to vote for which member of Star Academy (TV reality show) they want to vote off. But only 20% of them will go and vote, for free, for their politicians.
We should have a President Academy. You vote by SMS (textos) and we eliminate one member of the cabinet / parliament / assembly per week.
---
After the show I played tourist and got her to autograph her book which I proudly brought home. Jessica and I walked home and repeated jokes in the street. She remembered just as many as I did. It was great fun.
It just gets worse
Dr. Kanoui just called. He met with 4 other oncologists this morning and he talked with Dr. Hagege and all of them agreed that I need chemotherapy in addition to the x-ray therapy.
He explained to me a bit about how it would work. There would be 3 or 4 series of chemotherapy during the 8 weeks of x-ray therapy. 3 days of x-ray and chemotherapy together and then 18 days of x-ray therapy only and then 3 days of both, etc.
I asked him about the side effects and he explained that the chemo will accentuate the negative effects of the x-ray therapy so I will be more tired, I will have more difficulty swallowing and eating, I will have more burning sensations internally and externally. I asked him about the classic side effects of chemo and he said they have much better medication to treat the nausea and that hair loss is not systematic.
This would involve much more preparation and more appointments at the clinic. He wants to start everything as quickly as possible. He said I still have the option to refuse. But he needs an answer quickly. I asked him if I could call him back and he said "of course".
I called Desney who was most supportive and wants me to do whatever is necessary. I called Dr. Girard who thinks that it is logical that I go through chemo especially taking in to consideration the number of cancerous tumours that they found. He explained a bit more to me about how the cancer cells can spread and how they can be too small to show up on a scanner today but 3 to 9 months later be full-blown tumours. The chemotherapy will eliminate those before they grow in to something which would bring the cancer back.
After a big deep breath, and a mild panic, I called Dr. Kanoui back and told him I agreed to the chemotherapy.
I will go through it. I am not at all happy. I am angry, scared and sad all at the same time. But I will go through it.
I will be very, very upset if the cancer comes back after all of this.
It's going to be a very, very long 2 months.
:-(
He explained to me a bit about how it would work. There would be 3 or 4 series of chemotherapy during the 8 weeks of x-ray therapy. 3 days of x-ray and chemotherapy together and then 18 days of x-ray therapy only and then 3 days of both, etc.
I asked him about the side effects and he explained that the chemo will accentuate the negative effects of the x-ray therapy so I will be more tired, I will have more difficulty swallowing and eating, I will have more burning sensations internally and externally. I asked him about the classic side effects of chemo and he said they have much better medication to treat the nausea and that hair loss is not systematic.
This would involve much more preparation and more appointments at the clinic. He wants to start everything as quickly as possible. He said I still have the option to refuse. But he needs an answer quickly. I asked him if I could call him back and he said "of course".
I called Desney who was most supportive and wants me to do whatever is necessary. I called Dr. Girard who thinks that it is logical that I go through chemo especially taking in to consideration the number of cancerous tumours that they found. He explained a bit more to me about how the cancer cells can spread and how they can be too small to show up on a scanner today but 3 to 9 months later be full-blown tumours. The chemotherapy will eliminate those before they grow in to something which would bring the cancer back.
After a big deep breath, and a mild panic, I called Dr. Kanoui back and told him I agreed to the chemotherapy.
I will go through it. I am not at all happy. I am angry, scared and sad all at the same time. But I will go through it.
I will be very, very upset if the cancer comes back after all of this.
It's going to be a very, very long 2 months.
:-(
Thursday, October 06, 2005
The meeting I had been dreading...
This was the meeting I had been dreading ever since I found out I had cancer.
Desney and I met with Dr. Kanoui, the radio-therapist, to start planning the x-ray (radiation) therapy. He was running late and the radiotherapy waiting room was absolutely packed (standing room only) with patients. The waiting room was for both patients receiving treatment and for consultations so I don't know who was waiting for who.
Dr. Kanoui asked me quite a few questions and kept speaking the answers in to a dictophone to build up my file. I gave him copies of just about every piece of paper I have received throughout treatment and gave him the whole history.
Unfortunately, right of the bat, he said the bad word. He feels that because the cancer spread throughout my throat so quickly and widely, and due to the number of cancerous tumours found, I should also have chemotherapy. This was very, very bad news for me as up to now every doctor has said I would only need x-ray therapy which is bad enough. I really, really, really do not want to have to go through chemotherapy. He said that he does not make the decision on his own. There is a conseil multidisciplinaire (a group of several cancer specialist doctors). They meet and they look over the file together and they make a group decision as to whether or not chemotherapy is necessary. He will give me the answer next Thursday. To chemo or not to chemo that is the question. It's going to be a very, very long week.
In the mean time he strongly feels we need to start the x-ray therapy as quickly as possible. I will be back to the clinic on Tuesday, Wednesday and Thursday. Tuesday they do a simple scan (no injection) to create a sort of mask they put on me during the treatment which allows the computer to pinpoint the x-rays to the right place. After the scan they actually make the mask and they try it out on me (simulation) on Wednesday. On Thursday I go back for my clinical examination with Dr. Kanoui and we start planning the actual treatment. In my opinion it will probably start the following Monday.
We spoke about the treatment. He repeated, thus confirming, a few things I already knew. Once a day; Monday through Friday; lasts eight weeks; the x-rays are only a couple of minutes (used to be about 10 minutes from the last reports I had read), ... He also gave me a bit of information as regards the effects which is what I needed to hear. As he explained it's like having a sunburn inside your throat. I'll have difficulty swallowing which I'm already sort of used to but wasn't planning on living with for another 8 weeks. I'll have a dry mouth and throat as the salivary glands are affected. I'll need to have a daily fluoride treatment as the teethe are weakened by the x-rays. I'll be eating soups, purées, compotes and other such mushy food for 8 weeks or more as I will not recuperate immediately afterwards. If my swallowing becomes too difficult they have liquid protein that they will give me to keep up my stamina. All of this is obviously not joyous information but pretty much what I expected and I knew I was going to have to go through this. But this ain't chemotherapy!
Desney didn't like him at all. She didn't like his attitude or the way that he works. I am actualyl quite accustomed to a lot of his habits and that didn't bother me much. The aspect that I disliked was one sensed immediately that he deals with hundreds of cancer cases and patients regularly and this was another one to get through. It was a very rushed meeting and I actually got the feeling we were asking too many questions at the end. This was the opposite of what I was hoping for which was a relaxed discussion to prepare us for the next phase of therapy especially taking in to consideration his announcement of the possibility of chemotherapy.
Although I have a better idea where I am headed I was not pleased when we left. I am basically pissed off at the world again and, unfortunately, taking it out on everyone around me.
I'm hiding down in my office now to spare the rest of the family my moods...
It's going to be a really long week...
Desney and I met with Dr. Kanoui, the radio-therapist, to start planning the x-ray (radiation) therapy. He was running late and the radiotherapy waiting room was absolutely packed (standing room only) with patients. The waiting room was for both patients receiving treatment and for consultations so I don't know who was waiting for who.
Dr. Kanoui asked me quite a few questions and kept speaking the answers in to a dictophone to build up my file. I gave him copies of just about every piece of paper I have received throughout treatment and gave him the whole history.
Unfortunately, right of the bat, he said the bad word. He feels that because the cancer spread throughout my throat so quickly and widely, and due to the number of cancerous tumours found, I should also have chemotherapy. This was very, very bad news for me as up to now every doctor has said I would only need x-ray therapy which is bad enough. I really, really, really do not want to have to go through chemotherapy. He said that he does not make the decision on his own. There is a conseil multidisciplinaire (a group of several cancer specialist doctors). They meet and they look over the file together and they make a group decision as to whether or not chemotherapy is necessary. He will give me the answer next Thursday. To chemo or not to chemo that is the question. It's going to be a very, very long week.
In the mean time he strongly feels we need to start the x-ray therapy as quickly as possible. I will be back to the clinic on Tuesday, Wednesday and Thursday. Tuesday they do a simple scan (no injection) to create a sort of mask they put on me during the treatment which allows the computer to pinpoint the x-rays to the right place. After the scan they actually make the mask and they try it out on me (simulation) on Wednesday. On Thursday I go back for my clinical examination with Dr. Kanoui and we start planning the actual treatment. In my opinion it will probably start the following Monday.
We spoke about the treatment. He repeated, thus confirming, a few things I already knew. Once a day; Monday through Friday; lasts eight weeks; the x-rays are only a couple of minutes (used to be about 10 minutes from the last reports I had read), ... He also gave me a bit of information as regards the effects which is what I needed to hear. As he explained it's like having a sunburn inside your throat. I'll have difficulty swallowing which I'm already sort of used to but wasn't planning on living with for another 8 weeks. I'll have a dry mouth and throat as the salivary glands are affected. I'll need to have a daily fluoride treatment as the teethe are weakened by the x-rays. I'll be eating soups, purées, compotes and other such mushy food for 8 weeks or more as I will not recuperate immediately afterwards. If my swallowing becomes too difficult they have liquid protein that they will give me to keep up my stamina. All of this is obviously not joyous information but pretty much what I expected and I knew I was going to have to go through this. But this ain't chemotherapy!
Desney didn't like him at all. She didn't like his attitude or the way that he works. I am actualyl quite accustomed to a lot of his habits and that didn't bother me much. The aspect that I disliked was one sensed immediately that he deals with hundreds of cancer cases and patients regularly and this was another one to get through. It was a very rushed meeting and I actually got the feeling we were asking too many questions at the end. This was the opposite of what I was hoping for which was a relaxed discussion to prepare us for the next phase of therapy especially taking in to consideration his announcement of the possibility of chemotherapy.
Although I have a better idea where I am headed I was not pleased when we left. I am basically pissed off at the world again and, unfortunately, taking it out on everyone around me.
I'm hiding down in my office now to spare the rest of the family my moods...
It's going to be a really long week...
Another scanner
Back to the Clinique Hartmann. This time for a scan of my thorax and abdomen to make sure the cancer has not spread downwards.
The injection didn't tickle but the procedure was not a problem. Yet another big tunnel that spins round me. I kept my eyes closed again so don't ask me how impressive it was.
This time I actually got to speak to a doctor. He was very re-assuring in that there was no indication of any cancer in any of my other organs. He was quite nice and he even told me about Erb Duchenne Paralysis to inform me that there's an illness named after me.
I came back home and slept for a while before going back out to meet the new doctor.
The injection didn't tickle but the procedure was not a problem. Yet another big tunnel that spins round me. I kept my eyes closed again so don't ask me how impressive it was.
This time I actually got to speak to a doctor. He was very re-assuring in that there was no indication of any cancer in any of my other organs. He was quite nice and he even told me about Erb Duchenne Paralysis to inform me that there's an illness named after me.
I came back home and slept for a while before going back out to meet the new doctor.
Tuesday, October 04, 2005
Another clinic
Didn't get up till late and I admit I was very slow in getting ready this morning...
By the time I was "up and running" it was just about lunch time.
After lunch I head off on my big adventure. Today is yet another national strike. Luckily, for the first time ever, they've agreed to some sort of minimal service on public transport.
I took the bus to Porte de Champerret and walked to the Clinique Hartmann in Neuilly. It was a good 25 minute walk from the bus stop. I'm starting to wonder how feasible this is going to be with my daily radiation therapy treatments.
No big deal today. Just a panoramic dental x-ray to make sure there wasn't any sort of infection or malformation in my teeth and jaw as that whole area is going to get weakened by the x-ray treatment and they can't risk infection. I looked at the x-ray afterwards and it looked fine to me. But what the hell do I know?
The clinic looked good and modern and definitely specialises in cancer treatment. they have all sorts of facilities for all sorts of different cancer treatment from scanners and surgeries up through x-ray therapy and chemotherapy.
My next visit will be Thursday for a scanner at 12:45 and then the big meeting with the oncologist / radiotherapist at 18:00 when I should finally found out when I will start treatment and what it's going to be like.
Walked back to the bus stop and got home in time to read some e-mails before falling asleep before dinner.
Just before going in to the clinic I got through to my surgeon (Dr. Hagege) to confirm that I can eat normally now. He said "not quite". He would prefer that I continue eating mushy until the end of the week as it would be "stupid" to risk an accident, whereby my inner wounds would open and I'd have to go back in to surgery which would delay all of the rest of the treatment process, just for a couple of more days. He said I could eat somewhat normally as long as I chew really, really well and avoid such things as crisps, crackers, nuts, bread crust, ...
It's at least a step in the right direction. I had salads for dinner with the rest of the family and at least felt like I was part of society again...
By the time I was "up and running" it was just about lunch time.
After lunch I head off on my big adventure. Today is yet another national strike. Luckily, for the first time ever, they've agreed to some sort of minimal service on public transport.
I took the bus to Porte de Champerret and walked to the Clinique Hartmann in Neuilly. It was a good 25 minute walk from the bus stop. I'm starting to wonder how feasible this is going to be with my daily radiation therapy treatments.
No big deal today. Just a panoramic dental x-ray to make sure there wasn't any sort of infection or malformation in my teeth and jaw as that whole area is going to get weakened by the x-ray treatment and they can't risk infection. I looked at the x-ray afterwards and it looked fine to me. But what the hell do I know?
The clinic looked good and modern and definitely specialises in cancer treatment. they have all sorts of facilities for all sorts of different cancer treatment from scanners and surgeries up through x-ray therapy and chemotherapy.
My next visit will be Thursday for a scanner at 12:45 and then the big meeting with the oncologist / radiotherapist at 18:00 when I should finally found out when I will start treatment and what it's going to be like.
Walked back to the bus stop and got home in time to read some e-mails before falling asleep before dinner.
Just before going in to the clinic I got through to my surgeon (Dr. Hagege) to confirm that I can eat normally now. He said "not quite". He would prefer that I continue eating mushy until the end of the week as it would be "stupid" to risk an accident, whereby my inner wounds would open and I'd have to go back in to surgery which would delay all of the rest of the treatment process, just for a couple of more days. He said I could eat somewhat normally as long as I chew really, really well and avoid such things as crisps, crackers, nuts, bread crust, ...
It's at least a step in the right direction. I had salads for dinner with the rest of the family and at least felt like I was part of society again...
Monday, October 03, 2005
A better Monday
I normally hate Mondays. But this was actually not that bad a day. I actually appreciated the fact that the rest of the family was off at work and school and I had time to myself. I slept most of the morning but was feeling fine afterwards.
Mush for breakfast and some more mush for lunch and then some work. I was very, very pleased that I was able to do some programming. I actually did about two and a half hours of programming for a client developing a full user management system for their Extranet and it worked. I was most pleased that I was able to keep up my concentration that long and the simple fact that... I still got it... I can still program... that and the other simple fact that I know I just earned at least a bit of money rather than the entire day being a loss.
By the time I was finished Desney and the girls were home and preparing for the evening. When I finished I went upstairs and passed out on the couch until dinner.
Nothing on tele in the evening, as usual, and so a boring/relaxing evening of doing Sudokus on the couch...
One major improvement was that I had reduced my pain killers from 3 to 2 (morning and evening) for the day without any great difficulties.
Mush for breakfast and some more mush for lunch and then some work. I was very, very pleased that I was able to do some programming. I actually did about two and a half hours of programming for a client developing a full user management system for their Extranet and it worked. I was most pleased that I was able to keep up my concentration that long and the simple fact that... I still got it... I can still program... that and the other simple fact that I know I just earned at least a bit of money rather than the entire day being a loss.
By the time I was finished Desney and the girls were home and preparing for the evening. When I finished I went upstairs and passed out on the couch until dinner.
Nothing on tele in the evening, as usual, and so a boring/relaxing evening of doing Sudokus on the couch...
One major improvement was that I had reduced my pain killers from 3 to 2 (morning and evening) for the day without any great difficulties.
Sunday, October 02, 2005
Arc Sunday
Today is the biggest day of the year in French thoroughbred horse racing and one of the biggest days in thoroughbred racing throughout the world.
The Prix de l'Arc de Triomphe is just plain one of the most amazing days in racing. Six Group 1 races in one day is really quite spectacular. This was the first time in 10 years that I wasn't there at Longchamp enjoying the great company of passionate horse people and screaming so much that I come home without any voice.
Sitting at home watching the races on TV was more than slightly depresisng as it reminded me just how sick I am as it would take quite a lot to keep me away from the track. It was also an interesting experience playing with the living room TV, which is also connected to the computer, and flipping back and forth between the race coverage on Equidia and betting on the Internet through BetFair. We'd watch the horse presentation and the interviews and then place my bets at the last minute. It was actually quite fun.
Throughout the first few races I kept losing, especially as I tended to (stupidly) bet on favourites, and I was thinking it was going to be a particularly bad day. But then came the 5th race (Prix Marcel Boussac - Criterium des Pouliches) which was the first race I was waiting for. The favourite was a horse bred by our team called Rumplestiltskin who is also the granddaughter of one of our all-time favourite mares (Miesque). She won of course and it was a great boost to my morale.
When I refer to our team I mean the amazing group of people I've been working with over the past 15 years or so who make horse racing such an enjoyable experience for me. If I had been keeping up a blog last year there would have been lots of bright red, blinking and annoyingly loud text when "we" won the Arc de Triomphe last year. The finest racing day of my life and certainly a day Jessica will never forget either!
Two races later was the race of the day if not the year. The Prix de l'Arc de Triomphe and there was Bago, last year's winner, defending his title and going for that incredibly rare possibility of a doublon hoping to win the Arc twice. The first race of the day was a 4,000 metre race and this one was only 2,400 metres. But somehhow it seems to last longer than any other race. The last 300 metres was just plain wonderful. If only I could scream... Bago didn't win but he did pull up through the crowd to place in 3rd which not only brought me a great deal of pleasure but also helped to recuperate my losses from the first few races. I really, really wish I was there. I can just imagine people's faces, expressions and reactions. Our team would be there maintaining their constant stiff upper lip and acting like it was no big deal but with those childish glints in their eyes. The reactions obviously would be much, much more subdued in comparison to last year but I have a feeling everyone would have been at the very least happy. It was fun watching it on TV but certainly just not the same.
I basically passed out on the couch after the Arc and the family woke me up for dinner.
The pain killers tend to knock me out at least once if not twice a day which I consider a blessing. Although they seem to work fine for my internal wounds they don't seem to be helping at all for my external wounds (the scars) which are hurting the most at the moment. Every now and then I'll move my head to one side or the other or upwards and they'll pull me back and make me say "Ow". I also seem to be getting a cold which means sneezing and coughing both of which are absolutely incredibly painful. Sneezing almost makes me cry...
Finished the evening with my classic Sunday evening of two episodes of E.R. which again reminds me that there's people out there a hell of a lot worse off than myself.
Afterwards was an episode of Law & Order with, of course, some guy dying from cancer who saves his family. It's amazing how often cancer victims are used on television as a guaranteed tear jerker. I've been watching quite a lot of television lately and it's just amazing how preponderant cancer is throughout... especially American television...
I just can't get away from it.
The Prix de l'Arc de Triomphe is just plain one of the most amazing days in racing. Six Group 1 races in one day is really quite spectacular. This was the first time in 10 years that I wasn't there at Longchamp enjoying the great company of passionate horse people and screaming so much that I come home without any voice.
Sitting at home watching the races on TV was more than slightly depresisng as it reminded me just how sick I am as it would take quite a lot to keep me away from the track. It was also an interesting experience playing with the living room TV, which is also connected to the computer, and flipping back and forth between the race coverage on Equidia and betting on the Internet through BetFair. We'd watch the horse presentation and the interviews and then place my bets at the last minute. It was actually quite fun.
Throughout the first few races I kept losing, especially as I tended to (stupidly) bet on favourites, and I was thinking it was going to be a particularly bad day. But then came the 5th race (Prix Marcel Boussac - Criterium des Pouliches) which was the first race I was waiting for. The favourite was a horse bred by our team called Rumplestiltskin who is also the granddaughter of one of our all-time favourite mares (Miesque). She won of course and it was a great boost to my morale.
When I refer to our team I mean the amazing group of people I've been working with over the past 15 years or so who make horse racing such an enjoyable experience for me. If I had been keeping up a blog last year there would have been lots of bright red, blinking and annoyingly loud text when "we" won the Arc de Triomphe last year. The finest racing day of my life and certainly a day Jessica will never forget either!
Two races later was the race of the day if not the year. The Prix de l'Arc de Triomphe and there was Bago, last year's winner, defending his title and going for that incredibly rare possibility of a doublon hoping to win the Arc twice. The first race of the day was a 4,000 metre race and this one was only 2,400 metres. But somehhow it seems to last longer than any other race. The last 300 metres was just plain wonderful. If only I could scream... Bago didn't win but he did pull up through the crowd to place in 3rd which not only brought me a great deal of pleasure but also helped to recuperate my losses from the first few races. I really, really wish I was there. I can just imagine people's faces, expressions and reactions. Our team would be there maintaining their constant stiff upper lip and acting like it was no big deal but with those childish glints in their eyes. The reactions obviously would be much, much more subdued in comparison to last year but I have a feeling everyone would have been at the very least happy. It was fun watching it on TV but certainly just not the same.
I basically passed out on the couch after the Arc and the family woke me up for dinner.
The pain killers tend to knock me out at least once if not twice a day which I consider a blessing. Although they seem to work fine for my internal wounds they don't seem to be helping at all for my external wounds (the scars) which are hurting the most at the moment. Every now and then I'll move my head to one side or the other or upwards and they'll pull me back and make me say "Ow". I also seem to be getting a cold which means sneezing and coughing both of which are absolutely incredibly painful. Sneezing almost makes me cry...
Finished the evening with my classic Sunday evening of two episodes of E.R. which again reminds me that there's people out there a hell of a lot worse off than myself.
Afterwards was an episode of Law & Order with, of course, some guy dying from cancer who saves his family. It's amazing how often cancer victims are used on television as a guaranteed tear jerker. I've been watching quite a lot of television lately and it's just amazing how preponderant cancer is throughout... especially American television...
I just can't get away from it.
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