Last night was a good night: I slept through to 06:00 and didn’t have a second coughing fit until about 08:30 when I got up.
There isn’t much to say about today as I just didn’t do much. I was quite tired throughout the day and slept a lot. I watched a bit of television and read a bit of my book. But I didn’t do any one thing for too long as my concentration just isn’t there.
I had one of my Rénutryl drinks for lunch and Desney prepared a lovely dinner (lamb chops, boiled potatoes and an interesting mix of carrots and pumpkins with lots of garlic and onion). I was able to eat more than one helping of dinner. Desney and I have gotten to know each other’s cures over the many years. After living with Desney for so long I know for a fact that a cup of tea will cure just about any known illness or disease. This has been proven to me by BBC television in such shows as Casualty and Holby City and such where both doctors and patients are offered cups of tea no matter what the problem, ailment or situation may be. After living with me for so long Desney knows, by now, that garlic, onions and olive oil will cure any known disease, poison or illness known to man. It’s my family’s Italian-Jewish chemotherapy. It’ll kill anything and eliminate it out of the body.
In the evening, at about 23:00, we had yet another electricity cut. The last two we had were while Arlene was here which she found very disconcerting. The power cut lasted quite some time and when we went to bed, after midnight, we still didn’t have any electricity.
Sunday, December 04, 2005
Saturday, December 03, 2005
Day 48 - Saturday - A Day Off
Last night was better than usual in that I only got up twice (04:30 & 06:30).
No treatment today meant that I took my time getting ready throughout the morning.
I wish the painkillers would work and do something about the pain itself. The burning sensation gets worse each day.
I basically did nothing all day.
Desney prepared Mussels and chips for dinner in one of her classic cream, herbs and wine sauces. It was delicious. I was actually able to taste the mussles and ate 3 plates worth. The chips were great too and I dunked them in the sauce and could eat all of them as well. It was a nice feeling to have a full tummy with something other than a liquid protein drink. The Gewurztraminer the rest of the family was drinking looked like it went down quite well with the meal.
I went to bed at about midnight after playing around with the WiFi stuff on my Palm TX for a couple of hours.
No treatment today meant that I took my time getting ready throughout the morning.
I wish the painkillers would work and do something about the pain itself. The burning sensation gets worse each day.
I basically did nothing all day.
Desney prepared Mussels and chips for dinner in one of her classic cream, herbs and wine sauces. It was delicious. I was actually able to taste the mussles and ate 3 plates worth. The chips were great too and I dunked them in the sauce and could eat all of them as well. It was a nice feeling to have a full tummy with something other than a liquid protein drink. The Gewurztraminer the rest of the family was drinking looked like it went down quite well with the meal.
I went to bed at about midnight after playing around with the WiFi stuff on my Palm TX for a couple of hours.
Friday, December 02, 2005
Day 47 – The Circus
Last night was probably the worst of the week. I was up at 02:30, 04:30, 05:30 and 06:30. I’m starting to feel the same sleep depravation I remember from when the girls were babies. But I’m not that young and strong any more.
I was up and ready relatively early, around 09:30, as I knew I had some work things to get done in the morning. I tried a new painkiller a friend had recommended. By 10:00 I was basically macraméed in to the couch and couldn’t move. Great stuff! But it paralysed me, for all practical purposes, until about 15:15. Then I had to go back to the clinic for my last treatment of the week. The treatment went well and I was back home not too late.
For the evening we had purchased tickets, many months ago, for the Chinese Circus at Asnières Theatre. The Shenyang Acrobatic Troupe. I drank one of my Rénutryl drinks for dinner and off we went. We met Jessica at the theatre as she was coming home from representing her school at the Paris Model United Nations (PAMUN at UNESCO. It was a wonderful night out. The circus was more than enjoyable. However we’ve been so spoiled by the Cirque de Soleil now that it’s difficult for us to watch anything else. We had a great evening and I was very, very tired when we got home.
For quite some time I had been planning on this being my last day of treatment. It isn’t. I’ve got three days off and then I’ve got one more week of four treatments. Seven down and one more week to go…
I was up and ready relatively early, around 09:30, as I knew I had some work things to get done in the morning. I tried a new painkiller a friend had recommended. By 10:00 I was basically macraméed in to the couch and couldn’t move. Great stuff! But it paralysed me, for all practical purposes, until about 15:15. Then I had to go back to the clinic for my last treatment of the week. The treatment went well and I was back home not too late.
For the evening we had purchased tickets, many months ago, for the Chinese Circus at Asnières Theatre. The Shenyang Acrobatic Troupe. I drank one of my Rénutryl drinks for dinner and off we went. We met Jessica at the theatre as she was coming home from representing her school at the Paris Model United Nations (PAMUN at UNESCO. It was a wonderful night out. The circus was more than enjoyable. However we’ve been so spoiled by the Cirque de Soleil now that it’s difficult for us to watch anything else. We had a great evening and I was very, very tired when we got home.
For quite some time I had been planning on this being my last day of treatment. It isn’t. I’ve got three days off and then I’ve got one more week of four treatments. Seven down and one more week to go…
Thursday, December 01, 2005
Day 46 – Dr. Mammar
Another long and very difficult night. The pain and the coughing fits started even before going to bed this time and it was difficult to get the evening medicine down.
I got up a little later than usual and feeling a little weaker than usual. It took me all morning to get ready as has become habit.
I went and got my treatment and waited to see a doctor. I was very pleased to be ushered in to see Dr. Mammar. He remembered me well and was amazed at how long it’s been since we had a consultation together. He was very pleased with how I look (throat and neck) and feels I am tolerating the treatment very well. I told him I would hate to see the neck and throat of someone who’s tolerating it worse. He said I was definitely doing better than most. We spoke of my difficulties and looked for possible solutions together. There’s not much to be done about my biggest problem: the coughing fits. He checked me out with a stethoscope and looked up my nose with a special light. I don’t have a cold. The coughs come from the balls of saliva. There’s nothing they can do to break those up or stop them from forming. All I can do is keep trying the “magic mouthwash” he gives me to protect the throat. He gave me a prescription for some syrup to coat the throat to help protect it from the acid formed when the saliva goes up and down and when I wretch. They don’t have a solution for the spots (pimples) on my tongue either. He says those are a reaction from the chemotherapy and not the x-ray therapy. They are caused by a chemical reaction in my saliva which mixes with my tongue and is quite acidic. This is caused by the antibodies in my body fighting off the chemo chemicals while still eliminating them from my body. The spots will go away naturally and eventually as the chemo chemicals are fully eliminated. I told them that they make it difficult for me to eat as they make most food sting and burn in my mouth. He recommended I try the liquid protein drinks I had been prescribed earlier. As it turns out I had drunk one for the first time today, as I was having difficulty getting anything else down, and it actually was not that bad. He told me to try and have at least one if not two per day. I then asked him if there was anything that could be done about the pain in general. He said they couldn’t do anything in addition. I asked him in addition to what? He was absolutely flabbergasted by the fact that I was not taking morphine. He prescribes a morphine patch, systematically, at the beginning of treatment to all patients who have the levels of radiation therapy I have and especially all those who have radiation therapy and chemotherapy together. The patch is worn on the shoulder and it slowly distributes small doses of morphine in to the body over a 3-day period. The patch is replaced every 3 days by the patient. He had assumed I had the patch the first time we met and hadn’t even asked or proposed anything since. He was quite impressed I had gone this far without regular pain killers. He explained, however, how it is too late to start the morphine now as there is only one more week of treatment left. At this stage they would already be starting to work on the “weaning period” where the dosage is slowly reduced to get the patient off of the morphine without getting addicted. I told him that I had been taking Efferalgan (paracetamol) with Codeine in the evening. He prescribed me twice the dose and told me to take it three times a day. I’m looking forward to that!
We talked about the treatment in general. He is very easy to talk to. He too was very pleased that I had gone through two full cycles of chemotherapy and felt that was more than enough. Both the chemo and radiation therapies they are putting me through are at the maximal levels. He said this is because I am so young and healthy. I told him I didn’t feel either these days. I asked him about when the PAC (catheter in my chest) would be removed. He explained that normally with cancer at my level (stage 4 --- without actually mentioning that) they would normally keep the PAC in for 6 to 12 months in case they had to go back to chemotherapy if the cancer came back. However looking over my surgery records and the fact that all of the tumours had been completely removed, and the large levels of radiation and chemotherapies, he felt that the PAC could be removed without risk. The decision must come from Dr. Kanoui. However it can not be moved until all of the “toxicity” has left my body which will take another two months. I will therefore ask Dr. Kanoui about it when I seem him on December 20th but the earliest would be mid-February. We spoke a bit about post-treatment and what happens after the end of next week. We spoke about the tests (scanners and blood) and the exams (Dr. Hagege and his cameras up my nose and down my throat) that I’ll have to go through repeatedly over the next year or two. It ain’t over yet! Overall, as always, it was great to talk with him. I left there, as usual, feeling like I had covered everything I wanted to and had a full an honest answer.
I got home feeling relatively good. I spent a portion of the afternoon installing my new Palm TX and transferring all of my data from the old to the new. I then started preparing the, now old, Palm Tungsten T3 to be sold on eBay. I was asleep by the time the women of the house got home.
I got up a little later than usual and feeling a little weaker than usual. It took me all morning to get ready as has become habit.
I went and got my treatment and waited to see a doctor. I was very pleased to be ushered in to see Dr. Mammar. He remembered me well and was amazed at how long it’s been since we had a consultation together. He was very pleased with how I look (throat and neck) and feels I am tolerating the treatment very well. I told him I would hate to see the neck and throat of someone who’s tolerating it worse. He said I was definitely doing better than most. We spoke of my difficulties and looked for possible solutions together. There’s not much to be done about my biggest problem: the coughing fits. He checked me out with a stethoscope and looked up my nose with a special light. I don’t have a cold. The coughs come from the balls of saliva. There’s nothing they can do to break those up or stop them from forming. All I can do is keep trying the “magic mouthwash” he gives me to protect the throat. He gave me a prescription for some syrup to coat the throat to help protect it from the acid formed when the saliva goes up and down and when I wretch. They don’t have a solution for the spots (pimples) on my tongue either. He says those are a reaction from the chemotherapy and not the x-ray therapy. They are caused by a chemical reaction in my saliva which mixes with my tongue and is quite acidic. This is caused by the antibodies in my body fighting off the chemo chemicals while still eliminating them from my body. The spots will go away naturally and eventually as the chemo chemicals are fully eliminated. I told them that they make it difficult for me to eat as they make most food sting and burn in my mouth. He recommended I try the liquid protein drinks I had been prescribed earlier. As it turns out I had drunk one for the first time today, as I was having difficulty getting anything else down, and it actually was not that bad. He told me to try and have at least one if not two per day. I then asked him if there was anything that could be done about the pain in general. He said they couldn’t do anything in addition. I asked him in addition to what? He was absolutely flabbergasted by the fact that I was not taking morphine. He prescribes a morphine patch, systematically, at the beginning of treatment to all patients who have the levels of radiation therapy I have and especially all those who have radiation therapy and chemotherapy together. The patch is worn on the shoulder and it slowly distributes small doses of morphine in to the body over a 3-day period. The patch is replaced every 3 days by the patient. He had assumed I had the patch the first time we met and hadn’t even asked or proposed anything since. He was quite impressed I had gone this far without regular pain killers. He explained, however, how it is too late to start the morphine now as there is only one more week of treatment left. At this stage they would already be starting to work on the “weaning period” where the dosage is slowly reduced to get the patient off of the morphine without getting addicted. I told him that I had been taking Efferalgan (paracetamol) with Codeine in the evening. He prescribed me twice the dose and told me to take it three times a day. I’m looking forward to that!
We talked about the treatment in general. He is very easy to talk to. He too was very pleased that I had gone through two full cycles of chemotherapy and felt that was more than enough. Both the chemo and radiation therapies they are putting me through are at the maximal levels. He said this is because I am so young and healthy. I told him I didn’t feel either these days. I asked him about when the PAC (catheter in my chest) would be removed. He explained that normally with cancer at my level (stage 4 --- without actually mentioning that) they would normally keep the PAC in for 6 to 12 months in case they had to go back to chemotherapy if the cancer came back. However looking over my surgery records and the fact that all of the tumours had been completely removed, and the large levels of radiation and chemotherapies, he felt that the PAC could be removed without risk. The decision must come from Dr. Kanoui. However it can not be moved until all of the “toxicity” has left my body which will take another two months. I will therefore ask Dr. Kanoui about it when I seem him on December 20th but the earliest would be mid-February. We spoke a bit about post-treatment and what happens after the end of next week. We spoke about the tests (scanners and blood) and the exams (Dr. Hagege and his cameras up my nose and down my throat) that I’ll have to go through repeatedly over the next year or two. It ain’t over yet! Overall, as always, it was great to talk with him. I left there, as usual, feeling like I had covered everything I wanted to and had a full an honest answer.
I got home feeling relatively good. I spent a portion of the afternoon installing my new Palm TX and transferring all of my data from the old to the new. I then started preparing the, now old, Palm Tungsten T3 to be sold on eBay. I was asleep by the time the women of the house got home.
Wednesday, November 30, 2005
Day 45 – Harry Potter
Last night was actually a bit better. I only got up twice (04:00 and 06:00) with coughing fits. Desney’s been sleeping in the guest room, which is a bit depressing for me as I obviously miss her in bed, but she needs her sleep as she’s doing absolutely everything in this house and still finding the time to take care of me.
I had an early radiation appointment today so I hurried through the morning and was ready to go by 12:30. I didn’t have any lunch but I thought I’d grab something afterwards. I arrived on time for my appointment (13:00) and they were only slightly late. I was finished by 13:35. I told them I needed to see the doctor for my weekly appointment and they had me wait in the waiting room. The assistant came out about 10 minutes later to tell me that the doctor would be arriving until about 15:00 and I wouldn’t be able to see him until about 15:30 at the earliest. Wouldn’t it be better to see him tomorrow? I certainly wasn’t going to sit around in THAT waiting room for a couple of hours after my treatment especially as, for once; I actually had plans for the afternoon.
The best laid plans of mice and men… Today is the opening of the new Harry Potter movie (Harry Potter and the Goblet of Fire) in France. I promised the kids I’d take them if I was feeling up to it. The plan was that I would have my radiation at 13:00, see a doctor by 13:45 and be home by 14:30. We’d then go see a showing of the film sometime around 16:00. I’d pick up Alexandra and Jessica from home and head to the cinema.
A brief paragraph for the foreigners in the audience: Foreign films, and television shows for that matter, are shown in VF (version française – dubbed in French) throughout France. Luckily for us in Paris and the Paris region there are certain cinemas where we can sometimes see films in VO (version originale – original audio track with French subtitles). However not all films are shown in VO, especially children’s films, and they’re shown under special conditions (particular times, days and theatres). We (the Erbs) see all English-language films in VO even if it means we don’t see them in the cinema and have to wait for the DVD.
The first part of the plan that fell apart was the show time. The theatres showing Harry Potter in VO had times of either around 15:00 or around 17:30. Nothing in between. We therefore decided to rush to the 15:10 showing at the Porte de Clichy which is relatively close to the house. I got home in time and Alexandra had gotten home, after her English class, had already had lunch and was ready to go. We left in the car at 14:30 having told Jessica to meet us at the cinema. Normally it should have been about a 20 minute drive at the maximum. Of course today traffic was just ridiculous! We arrived in the 17th, actually just next to Jessica’s school, at 14:55. We weren’t even half way there by then. By absolute coincidence Jessica actually crossed the street, to go to the métro, right in front of us. Alex recognised her, she jumped in the car and we headed off. More traffic through the 17th and we arrived in front of the cinema at 15:10. I dropped the kids off to get the tickets and looked for a parking lot. I found one in about 5 minutes. In the meantime the girls had tried to phone me about 4 or 5 times. But as I was underground in the parking lot I couldn’t answer. When I got out of the lot I called them only to find out that the move was sold out. I hadn’t expected that for a VO showing in the 17th… even on the opening day. But Harry Potter is Harry Potter. I went to go pick them up at the cinema and take them back to the parking lot to head home. In front of the cinema we met Kathleen, one of the parents who I work with in the parents’ association and someone who is very close to me, and her son. They too were headed to see Harry Potter. They had same sort of special tickets so they waited for the next showing. It was a very strange experience seeing someone who knew me “back when” (i.e. pre-cancer).
We made a few phone calls and Desney agreed to let us go see the next showing on the Champs-Elysées at 17:30. We piled in to the car and got to the Champs-Elysées in about 15 minutes, parked in about 5, walked to the theatre in 10 and bought our tickets. We were now the proud owners of 3 tickets to see Harry Potter at 17:30. It was about 15:45 at the time so we basically walked around the Champs-Elysées, stopping in to the FNAC for a while, and we headed back to the cinema early. It was a good thing we were early for quite a lot of people had started queuing upstairs. I grabbed and sandwich and got the girls popcorn and soda and we got great seats.
I must say, in my personal and rarely humble opinion, I felt the movie was the best of the four. New director, new style and very much a kids’ action / adventure movie. The kids are even getting better as actors. It was great fun and a big long.
We headed home and the kids practically went straight to bed. I went to bed as usual, after midnight, and alone.
I had an early radiation appointment today so I hurried through the morning and was ready to go by 12:30. I didn’t have any lunch but I thought I’d grab something afterwards. I arrived on time for my appointment (13:00) and they were only slightly late. I was finished by 13:35. I told them I needed to see the doctor for my weekly appointment and they had me wait in the waiting room. The assistant came out about 10 minutes later to tell me that the doctor would be arriving until about 15:00 and I wouldn’t be able to see him until about 15:30 at the earliest. Wouldn’t it be better to see him tomorrow? I certainly wasn’t going to sit around in THAT waiting room for a couple of hours after my treatment especially as, for once; I actually had plans for the afternoon.
The best laid plans of mice and men… Today is the opening of the new Harry Potter movie (Harry Potter and the Goblet of Fire) in France. I promised the kids I’d take them if I was feeling up to it. The plan was that I would have my radiation at 13:00, see a doctor by 13:45 and be home by 14:30. We’d then go see a showing of the film sometime around 16:00. I’d pick up Alexandra and Jessica from home and head to the cinema.
A brief paragraph for the foreigners in the audience: Foreign films, and television shows for that matter, are shown in VF (version française – dubbed in French) throughout France. Luckily for us in Paris and the Paris region there are certain cinemas where we can sometimes see films in VO (version originale – original audio track with French subtitles). However not all films are shown in VO, especially children’s films, and they’re shown under special conditions (particular times, days and theatres). We (the Erbs) see all English-language films in VO even if it means we don’t see them in the cinema and have to wait for the DVD.
The first part of the plan that fell apart was the show time. The theatres showing Harry Potter in VO had times of either around 15:00 or around 17:30. Nothing in between. We therefore decided to rush to the 15:10 showing at the Porte de Clichy which is relatively close to the house. I got home in time and Alexandra had gotten home, after her English class, had already had lunch and was ready to go. We left in the car at 14:30 having told Jessica to meet us at the cinema. Normally it should have been about a 20 minute drive at the maximum. Of course today traffic was just ridiculous! We arrived in the 17th, actually just next to Jessica’s school, at 14:55. We weren’t even half way there by then. By absolute coincidence Jessica actually crossed the street, to go to the métro, right in front of us. Alex recognised her, she jumped in the car and we headed off. More traffic through the 17th and we arrived in front of the cinema at 15:10. I dropped the kids off to get the tickets and looked for a parking lot. I found one in about 5 minutes. In the meantime the girls had tried to phone me about 4 or 5 times. But as I was underground in the parking lot I couldn’t answer. When I got out of the lot I called them only to find out that the move was sold out. I hadn’t expected that for a VO showing in the 17th… even on the opening day. But Harry Potter is Harry Potter. I went to go pick them up at the cinema and take them back to the parking lot to head home. In front of the cinema we met Kathleen, one of the parents who I work with in the parents’ association and someone who is very close to me, and her son. They too were headed to see Harry Potter. They had same sort of special tickets so they waited for the next showing. It was a very strange experience seeing someone who knew me “back when” (i.e. pre-cancer).
We made a few phone calls and Desney agreed to let us go see the next showing on the Champs-Elysées at 17:30. We piled in to the car and got to the Champs-Elysées in about 15 minutes, parked in about 5, walked to the theatre in 10 and bought our tickets. We were now the proud owners of 3 tickets to see Harry Potter at 17:30. It was about 15:45 at the time so we basically walked around the Champs-Elysées, stopping in to the FNAC for a while, and we headed back to the cinema early. It was a good thing we were early for quite a lot of people had started queuing upstairs. I grabbed and sandwich and got the girls popcorn and soda and we got great seats.
I must say, in my personal and rarely humble opinion, I felt the movie was the best of the four. New director, new style and very much a kids’ action / adventure movie. The kids are even getting better as actors. It was great fun and a big long.
We headed home and the kids practically went straight to bed. I went to bed as usual, after midnight, and alone.
The Telephone
This is an appeal to everyone. Please stop calling me on the telephone (home land line, office line or mobile phone)!
My voice is now below a whisper and I have to really shout to be even fainly heard on the phone. Oral conversation rapidly becomes quite painful and extremely frustrating for both parties.
E-mail works fine as does the comments section here on the blog. I also can sometimes be found on MSN Messenger with my old e-mail address (erb@erb.com) or on Yahoo Messenger with my Yahoo account (dce42). I can type just as fast as I speak so instant messaging works fine for me. However plesae do not assume that because you see me online in one of these IM programmes that I am up and ready for a chat. Sometimes I just leave the computer on...
My voice is now below a whisper and I have to really shout to be even fainly heard on the phone. Oral conversation rapidly becomes quite painful and extremely frustrating for both parties.
E-mail works fine as does the comments section here on the blog. I also can sometimes be found on MSN Messenger with my old e-mail address (erb@erb.com) or on Yahoo Messenger with my Yahoo account (dce42). I can type just as fast as I speak so instant messaging works fine for me. However plesae do not assume that because you see me online in one of these IM programmes that I am up and ready for a chat. Sometimes I just leave the computer on...
Tuesday, November 29, 2005
Day 44 - Back to the clinic
Last night was probably the worst. I had coughing fits almost hourly and they were really very painful. Coughing and wretching both really hurt my throat. I just wish it would stop...
I got out of bed around 9:00 trying to get at least the slightest bits of sleep in bouts. I took all morning getting breakfast down, my medicine and getting ready. By the end of the morning I had to grab a very quick lunch (a sandwich from the local bakery) and dash off to the clinic.
The clinic has 2 radiation therapy machines. One on each side of the building. "My" machine is the one on the far side. Today my machine wasn't working. They were therefore running very late as they had to squeeze both groups on to the one machine on the near side. I arrived 5 minutes early and ended up waiting an hour and a quarter before my treatment. As the team working on this machine is different from the other team I couldn't get my schedule planned for next week. As everything was running late the doctors were running late as well. I wanted to see a doctor about the coughing, the spots on my tongue and the constant pain. However I was told I would have to wait another hour and a half to see a doctor. I went home.
The pain and dryness increased after today's treatment. I sometimes get the feeling someone's trying to test me with all of this to see just how much I can stand.
"Still here?"... "let's try giving some more then! We'll see if you come back."
Desney prepared a delicious steak and salad. I could eat the steak, albeit embarassingly slowly, but the sauce on the salad burned my tongue and throat.
I spent the evening watching TV shows I had recorded from BBC Prime on to the computer (Down to Earth and good ole Ballykissangel).
I got out of bed around 9:00 trying to get at least the slightest bits of sleep in bouts. I took all morning getting breakfast down, my medicine and getting ready. By the end of the morning I had to grab a very quick lunch (a sandwich from the local bakery) and dash off to the clinic.
The clinic has 2 radiation therapy machines. One on each side of the building. "My" machine is the one on the far side. Today my machine wasn't working. They were therefore running very late as they had to squeeze both groups on to the one machine on the near side. I arrived 5 minutes early and ended up waiting an hour and a quarter before my treatment. As the team working on this machine is different from the other team I couldn't get my schedule planned for next week. As everything was running late the doctors were running late as well. I wanted to see a doctor about the coughing, the spots on my tongue and the constant pain. However I was told I would have to wait another hour and a half to see a doctor. I went home.
The pain and dryness increased after today's treatment. I sometimes get the feeling someone's trying to test me with all of this to see just how much I can stand.
"Still here?"... "let's try giving some more then! We'll see if you come back."
Desney prepared a delicious steak and salad. I could eat the steak, albeit embarassingly slowly, but the sauce on the salad burned my tongue and throat.
I spent the evening watching TV shows I had recorded from BBC Prime on to the computer (Down to Earth and good ole Ballykissangel).
Monday, November 28, 2005
Day 43 - 4th Day Off
One thing I'm starting to truly realise is that all of this certainly isn't going to stop the day after treatment stops. It's been 4 days now that I haven't had any treatment and I certainly feel a lot worse than I did 4 days ago. The pain has increased both in intensity and in regularity. It's obvious that when the treatment ends, in less than 2 weeks, the pain is going to increase before it decreases. Just something else to look forward to.
I didn't get a lot of sleep last night. I have coughing fits throughout the night about once every hour or hour and a half. I was therefore pretty tired this morning even though I didn't get out of bed until about 09:00.
It took me all morning to get through breakfast and medecine and such. That just brought me to lunch.
After lunch I had been hopeful to go down to my office and get a bit of accounting done. No such luck. I just didn't have the energy for it. I hung out on the couch all afternoon doing practically nothing (TV, book (Cauchemar dans les Côtes de Nuits), Sudokus, ...). I didn't actually sleep as I wanted to be good and tired for the evening.
Desney prepared dinner, as always, and it was delicious. It's getting more and more painful to eat but I am still getting food down. It just takes me a lot longer.
There was nothing on television as usual. As Springsteen predicted "57 channels and nothing on"... well we have a lot more channels than that and still nothing on. I zapped back and forth most of the evening.
I didn't get a lot of sleep last night. I have coughing fits throughout the night about once every hour or hour and a half. I was therefore pretty tired this morning even though I didn't get out of bed until about 09:00.
It took me all morning to get through breakfast and medecine and such. That just brought me to lunch.
After lunch I had been hopeful to go down to my office and get a bit of accounting done. No such luck. I just didn't have the energy for it. I hung out on the couch all afternoon doing practically nothing (TV, book (Cauchemar dans les Côtes de Nuits), Sudokus, ...). I didn't actually sleep as I wanted to be good and tired for the evening.
Desney prepared dinner, as always, and it was delicious. It's getting more and more painful to eat but I am still getting food down. It just takes me a lot longer.
There was nothing on television as usual. As Springsteen predicted "57 channels and nothing on"... well we have a lot more channels than that and still nothing on. I zapped back and forth most of the evening.
Sunday, November 27, 2005
Day 42 - A relaxing Sunday
I wish I could say that every day gets better. Unfortunately it's the opposite: every day just gets worse.
As it's Sunday I slept in a bit. Alexandra even slept in a bit. Jessica had gone to a friend's house last night to sleep over. I spent all morning having breakfast and getting clean.
For the first time in quite some time I actually went down to my office and sorted through some paperwork. I mostly did what absolutely had to be done and left it at that. I am very frustrated by the fact that I can't concentrate too long on any one project. My mind wanders and I can't remember what I'm doing. Programming is therefore impossible. Bookkeeping is about as far as I can get and even then I have to total up about 3 times.
In the afternoon I had a nap and then Desney made pork spare ribs for dinner with potatoes and carrots. I was able to eat everything, albeit with difficulty, and watched as the rest of the family had a bottle of Fleurie to wash it all down.
E.R. has finished here in France so we had to find something else to watch. We ended up watching Capital which is a show we used to watch regularly before E.R. was running. It's a news show based on the French economy. It's extremely well done and we've been watching it ever since their first season. Now we just miss Culture Pub which used to be on afterwards and which showed television adverts from all over the world many of which were absolutely hilarious.
As I started yet another coughing fit again at about half past midnight I crawled in to the bed in the guest room to allow Desney to get some sleep. She's got work tomorrow, of course, and I've just got to try and get through the day...
- My red neck is now burned brown.
- My coughing fits are now both at night and during the day with the extra added delightful feature of wretching up saliva every now and then.
- Swallowing is beyond painful and my throat constantly hurts.
The dryness in my throat is such that it's sometimes even hurts to breathe. - My voice has gotten worse and worse to the point that now if I scream it comes out a whisper.
As it's Sunday I slept in a bit. Alexandra even slept in a bit. Jessica had gone to a friend's house last night to sleep over. I spent all morning having breakfast and getting clean.
For the first time in quite some time I actually went down to my office and sorted through some paperwork. I mostly did what absolutely had to be done and left it at that. I am very frustrated by the fact that I can't concentrate too long on any one project. My mind wanders and I can't remember what I'm doing. Programming is therefore impossible. Bookkeeping is about as far as I can get and even then I have to total up about 3 times.
In the afternoon I had a nap and then Desney made pork spare ribs for dinner with potatoes and carrots. I was able to eat everything, albeit with difficulty, and watched as the rest of the family had a bottle of Fleurie to wash it all down.
E.R. has finished here in France so we had to find something else to watch. We ended up watching Capital which is a show we used to watch regularly before E.R. was running. It's a news show based on the French economy. It's extremely well done and we've been watching it ever since their first season. Now we just miss Culture Pub which used to be on afterwards and which showed television adverts from all over the world many of which were absolutely hilarious.
As I started yet another coughing fit again at about half past midnight I crawled in to the bed in the guest room to allow Desney to get some sleep. She's got work tomorrow, of course, and I've just got to try and get through the day...
Saturday, November 26, 2005
Day 41 - A real day off
After a few nights of not getting any sleep and coughing all night I had a good look at the painkillers I have been shoving up my ass. I checked out the ingredients: 500 mg of Paracetamol (fine), 15mg of dried opium (bring it on!) and 50 mg of pure caffeine (what the???). It clearly says on the notice inside that these are not to be taken at night due to the large quantity of pure caffeine. What was Dr. Kanoui thinking??? I then checked out the effervescent painkillers I had been prescribed after my surgeries: 500 mg of Paracetamol (same), 30 mg of Codeine (not quite the same as dried opium but it'll have to do) and no caffeine. I took one of those last night and slept straight through to the morning.
Awoke with my standard coughing fit. But within a few hours I was fine again. I caught up a bit with my e-mails where I could and did a bit of bookkeeping.
I had a couple of tuna and avocado sandwiches at 15:00 and passed out by 16:00. I didn't get up until after 19:00 which was actually not such a good idea. I obviously needed the sleep but that was too much daytime sleep.
Desney made a chicken curry for dinner which was quite tasty. Afterwards I watched a bit of X Files on DVD and went to bed late.
Awoke with my standard coughing fit. But within a few hours I was fine again. I caught up a bit with my e-mails where I could and did a bit of bookkeeping.
I had a couple of tuna and avocado sandwiches at 15:00 and passed out by 16:00. I didn't get up until after 19:00 which was actually not such a good idea. I obviously needed the sleep but that was too much daytime sleep.
Desney made a chicken curry for dinner which was quite tasty. Afterwards I watched a bit of X Files on DVD and went to bed late.
Friday, November 25, 2005
Day 40 - Au revoir Arlene
Another loooong night.
I woke up on the couch having coughed throughout the night. It took me all morning to get breakfast down along with my medicines and getting showered and everything.
By the time I was ready it was just about lunch time. Arlene and I went out for a last meal at our local restaurant (Le Madrigal). It was not a happy time for either of us.
When we got back from lunch I called her a cab and got her absolutely enormous bag down the stairs to the taxi. Off she went to the airport to fly back to New York.
After Arlene left I slept all afternoon. Emma was cleaning the house so I hid in our bedroom. I got up when the kids got home after 18:00.
In the evening we watched Star Wars III - Revenge of the Sith. We all agreed that this is by far the worst of the 6 Star Wars movies. Whoever told Hayden Christensen he could act should be shot. However Jess, and her girlfriends, find him terribly sexy. Eating pizza in front of the television we felt like a true American family.
After the kids went to sleep I watched the second DVD which has all of the "Making Of..." documentaries and background information. It was much better than the movie!
I woke up on the couch having coughed throughout the night. It took me all morning to get breakfast down along with my medicines and getting showered and everything.
By the time I was ready it was just about lunch time. Arlene and I went out for a last meal at our local restaurant (Le Madrigal). It was not a happy time for either of us.
When we got back from lunch I called her a cab and got her absolutely enormous bag down the stairs to the taxi. Off she went to the airport to fly back to New York.
After Arlene left I slept all afternoon. Emma was cleaning the house so I hid in our bedroom. I got up when the kids got home after 18:00.
In the evening we watched Star Wars III - Revenge of the Sith. We all agreed that this is by far the worst of the 6 Star Wars movies. Whoever told Hayden Christensen he could act should be shot. However Jess, and her girlfriends, find him terribly sexy. Eating pizza in front of the television we felt like a true American family.
After the kids went to sleep I watched the second DVD which has all of the "Making Of..." documentaries and background information. It was much better than the movie!
Thursday, November 24, 2005
Day 39 – Salon du Vin
La nuit fût longue.
[It was a long night as we say in French]. I got to bed about half past midnight, as usual, and almost immediately started coughing. That lasted for quite some time and was quite painful. About an hour later it started all over again. I ended up putting myself to sleep on the couch so Desney could get some sleep. I spent the entire night coughing. I would have an attack for about 10 minutes every hour throughout the night. This was with the painkiller stuck up my … and supposedly calming things down. It was a long and tiring night.
I got out of bed (couch) early and took a shower to get ready to go as quickly as I could. Desney and I left at about 10:30 which is very late for us normally when we go to the Salon des Vignerons Indépendants. Normally we try and get there for 10:00 for the opening. The traffic around the Porte de Versailles was just ridiculous. They’re building the new tramway system along the boulevards. With a combination of the road works and everyone going to the salons (Salon de l’Education at the same time and place as the Salon de Vin???) it was beyond ridiculous. At the end it took us 45 minutes to go the last 600 metres (from Ballard to Porte de Versailles)!!! I dropped Desney off at the Salon so she could meet Arlene. Arlene got from her hotel at La Madeleine to the Porte de Versailles in less time than it took us to drive the last 600 metres. I drove around the parking lots for another 45 minutes. Absolutely every parking lot was full. I ended up patrolling the streets and found a place about 15 minutes’ walk away. I was just so glad to park the car and get out!
For those of you who are curious as to what the Salon des Vignerons Indépendants is I actually wrote an ARTICLE about it for an Israeli food and wine magazine once upon a time. This was Arlene’s first experience and I’m sure it was quite amazing. For me personally it was probably the must frustrating experience of my life. We went round only to the wines we absolutely need right now. With my faint and scratchy voice, burned neck and big scar it was obvious that something had happened. However it was a shock for both sides of the counters to hear me say that I couldn’t drink the wine. I could only smell from Desney’s glass. It’s like throwing a kid in a candy store and sewing his mouth shut. We got out of there in record time as we really only bought the minimum and visited the minimum of winemakers. I had a very good idea as to what we needed already and we had most of it delivered. It was just a matter of filling out the order forms and paying. I spent quite a lot… as usual.
We got home just in time for me to have a very quick rest before heading back out to the clinic for my last treatment of the week. Arlene came with me for her last chance to wait in the waiting room full of cancer victims. Don’t ask me why. The treatment went as always and we headed home. I was in considerable pain and could not stop coughing. It hopefully didn’t affect my driving too much and we made it home safely.
Our getting around safely today may have been helped by the fact that I replaced my TomTom Go One GPS with the newer TomTom Go 500 GPS. The new model keeps track of traffic and calculates the routes based on the current traffic situation. It also works as a hands-free Bluetooth phone solution which was a lot of fun. For a bit of novelty I can also download even more voices for this model and I downloaded John Cleese’s voice. It was a lot of fun but got old pretty quickly.
I was able to take a nap before dinner and Desney made pasta. After dinner we watched Bend It Like Beckham as Arlene had never seen it before.
[It was a long night as we say in French]. I got to bed about half past midnight, as usual, and almost immediately started coughing. That lasted for quite some time and was quite painful. About an hour later it started all over again. I ended up putting myself to sleep on the couch so Desney could get some sleep. I spent the entire night coughing. I would have an attack for about 10 minutes every hour throughout the night. This was with the painkiller stuck up my … and supposedly calming things down. It was a long and tiring night.
I got out of bed (couch) early and took a shower to get ready to go as quickly as I could. Desney and I left at about 10:30 which is very late for us normally when we go to the Salon des Vignerons Indépendants. Normally we try and get there for 10:00 for the opening. The traffic around the Porte de Versailles was just ridiculous. They’re building the new tramway system along the boulevards. With a combination of the road works and everyone going to the salons (Salon de l’Education at the same time and place as the Salon de Vin???) it was beyond ridiculous. At the end it took us 45 minutes to go the last 600 metres (from Ballard to Porte de Versailles)!!! I dropped Desney off at the Salon so she could meet Arlene. Arlene got from her hotel at La Madeleine to the Porte de Versailles in less time than it took us to drive the last 600 metres. I drove around the parking lots for another 45 minutes. Absolutely every parking lot was full. I ended up patrolling the streets and found a place about 15 minutes’ walk away. I was just so glad to park the car and get out!
For those of you who are curious as to what the Salon des Vignerons Indépendants is I actually wrote an ARTICLE about it for an Israeli food and wine magazine once upon a time. This was Arlene’s first experience and I’m sure it was quite amazing. For me personally it was probably the must frustrating experience of my life. We went round only to the wines we absolutely need right now. With my faint and scratchy voice, burned neck and big scar it was obvious that something had happened. However it was a shock for both sides of the counters to hear me say that I couldn’t drink the wine. I could only smell from Desney’s glass. It’s like throwing a kid in a candy store and sewing his mouth shut. We got out of there in record time as we really only bought the minimum and visited the minimum of winemakers. I had a very good idea as to what we needed already and we had most of it delivered. It was just a matter of filling out the order forms and paying. I spent quite a lot… as usual.
We got home just in time for me to have a very quick rest before heading back out to the clinic for my last treatment of the week. Arlene came with me for her last chance to wait in the waiting room full of cancer victims. Don’t ask me why. The treatment went as always and we headed home. I was in considerable pain and could not stop coughing. It hopefully didn’t affect my driving too much and we made it home safely.
Our getting around safely today may have been helped by the fact that I replaced my TomTom Go One GPS with the newer TomTom Go 500 GPS. The new model keeps track of traffic and calculates the routes based on the current traffic situation. It also works as a hands-free Bluetooth phone solution which was a lot of fun. For a bit of novelty I can also download even more voices for this model and I downloaded John Cleese’s voice. It was a lot of fun but got old pretty quickly.
I was able to take a nap before dinner and Desney made pasta. After dinner we watched Bend It Like Beckham as Arlene had never seen it before.
Wednesday, November 23, 2005
Day 38 – Good news and not so good news…
The morning was as usual. Painful.
Arlene left at mid day to head off to Paris to see her friend Helga who came over from London. She’ll be having dinner at a nice restaurant and staying at a nice hotel for the night. It’ll be good for her to get out of our depressingly medical household.
I grabbed a quick Greek sandwich (donner kebab) so as to get something quick, hot and filling before my treatment. The treatment was more of the same. This time they must have zapped me 7 times! This time first my right shoulder was clamped to the table, along with my face of course, and then they released the right shoulder and clamped the left shoulder to finish.
Afterwards was the meeting I had been dreading: my weekly consultation with Dr. Kanoui with the final decision as regards chemotherapy. He was very pleased to see me looking much better and was also pleased that instead of losing another kilo this week I actually gained 600 grams. He looked over my file and brought up the chemotherapy right away. He looked at the effects of the last two cycles of chemotherapy and asked me what I wanted to do. I told him I didn’t want to continue the chemotherapy and he said he understood and agreed immediately. He didn’t try to dissuade me nor even discuss the matter. He said it was very positive that we were able to complete two full cycles of chemo and he actually tried to reassure me that this would not put me in any extra danger or risk. He also explained that the goal is not for the chemo to wipe me out to such an extent that the radiation therapy can not do its job either. He asked where Desney was, as she had been present at just about every prior consultation with him, and I explained that she wasn’t here because she didn’t agree with me stopping the chemo. He actually told me to reassure her that everything would be fine and that it was a good and understandable decision. All of this obviously made me feel much better and was damn good news.
As next week is my final week started asking about the post-treatment. He corrected me. They had always said that the treatment would last 7 to 8 weeks. We, optimistically, had always leaned towards the 7 weeks. Unfortunately he said that the treatment will last the full 8 weeks which means that instead of another 5 sessions I have another 9 sessions over 2 weeks rather than just one. This was not so good news…
He renewed my prescriptions for the medicines that needed renewing and told me to keep up whatever I was doing to keep my weight up and make me look happy. Dr. Kanoui is unaware of my childhood acting experience {vbg}.
When I got home my throat really started burning more than usual and water just would not put out the fire. I tried to nap before dinner but just couldn’t. We had dinner, without Arlene for the first time in many days, and I was still in pain after the meal.
I spent the evening in front of the television as usual. But I finished my book.
Arlene left at mid day to head off to Paris to see her friend Helga who came over from London. She’ll be having dinner at a nice restaurant and staying at a nice hotel for the night. It’ll be good for her to get out of our depressingly medical household.
I grabbed a quick Greek sandwich (donner kebab) so as to get something quick, hot and filling before my treatment. The treatment was more of the same. This time they must have zapped me 7 times! This time first my right shoulder was clamped to the table, along with my face of course, and then they released the right shoulder and clamped the left shoulder to finish.
Afterwards was the meeting I had been dreading: my weekly consultation with Dr. Kanoui with the final decision as regards chemotherapy. He was very pleased to see me looking much better and was also pleased that instead of losing another kilo this week I actually gained 600 grams. He looked over my file and brought up the chemotherapy right away. He looked at the effects of the last two cycles of chemotherapy and asked me what I wanted to do. I told him I didn’t want to continue the chemotherapy and he said he understood and agreed immediately. He didn’t try to dissuade me nor even discuss the matter. He said it was very positive that we were able to complete two full cycles of chemo and he actually tried to reassure me that this would not put me in any extra danger or risk. He also explained that the goal is not for the chemo to wipe me out to such an extent that the radiation therapy can not do its job either. He asked where Desney was, as she had been present at just about every prior consultation with him, and I explained that she wasn’t here because she didn’t agree with me stopping the chemo. He actually told me to reassure her that everything would be fine and that it was a good and understandable decision. All of this obviously made me feel much better and was damn good news.
As next week is my final week started asking about the post-treatment. He corrected me. They had always said that the treatment would last 7 to 8 weeks. We, optimistically, had always leaned towards the 7 weeks. Unfortunately he said that the treatment will last the full 8 weeks which means that instead of another 5 sessions I have another 9 sessions over 2 weeks rather than just one. This was not so good news…
He renewed my prescriptions for the medicines that needed renewing and told me to keep up whatever I was doing to keep my weight up and make me look happy. Dr. Kanoui is unaware of my childhood acting experience {vbg}.
When I got home my throat really started burning more than usual and water just would not put out the fire. I tried to nap before dinner but just couldn’t. We had dinner, without Arlene for the first time in many days, and I was still in pain after the meal.
I spent the evening in front of the television as usual. But I finished my book.
Tuesday, November 22, 2005
Day 37 - Another day...
Another day like all the others.
Woke up in even more pain than usual, as I stupidly wanted to try not taking my painkiller suppository for one night, and spent the morning getting breakfast and medecine down.
At the end of the morning I looked at my e-mail and found a reply from my general practicioner (Dr. Girard). He, of course, feels I should continue the chemotherapy. He proceeds to propose supposedly additional treatment to relieve the symptoms of nausea and convulsions. However the treatments he proposes are exactly those which I already have and they are not working. I had hoped, ever so slightly, that he would back me up in my decision to not go through with the chemotherapy. But I understand his persistence in keeping with "the protocol". I will write back to him to explain my decision.
Arlene and I went back out to the local restaurant (Le Madrigal) for a good lunch as I didn't know if I'd be able to eat in the evening. We had a great time with good food.
After lunch I had a nap and then we headed off to the clinic for today's treatment. In addition to the mask which is clamped down in 3 points (left, right and top centre) they clamped down my right shoulder in a sort of vice to the table. I assume by the end of next week we'll be up to leather shackles, whips and chains...
We all had dinner together. Desney prepared sausages, mashed potatoes, peas and carrots. During dinner I brought up the e-mail from Dr. Girard which led to a rather emotional discussion. It appears as though the rest of the family does not agree with me refusing chemotherapy and they feel I am "taking the easy way out". All I can say is that no one can possibly know how I feel. However it doesn't make any of this any easier for me.
The radiation therapy is starting to really burn my skin and it's gone from red to brown and wrinkled around my throat. The burn comes from the inside so one can only imagine how much worse that is. I hope my skin holds out long enough...
Woke up in even more pain than usual, as I stupidly wanted to try not taking my painkiller suppository for one night, and spent the morning getting breakfast and medecine down.
At the end of the morning I looked at my e-mail and found a reply from my general practicioner (Dr. Girard). He, of course, feels I should continue the chemotherapy. He proceeds to propose supposedly additional treatment to relieve the symptoms of nausea and convulsions. However the treatments he proposes are exactly those which I already have and they are not working. I had hoped, ever so slightly, that he would back me up in my decision to not go through with the chemotherapy. But I understand his persistence in keeping with "the protocol". I will write back to him to explain my decision.
Arlene and I went back out to the local restaurant (Le Madrigal) for a good lunch as I didn't know if I'd be able to eat in the evening. We had a great time with good food.
After lunch I had a nap and then we headed off to the clinic for today's treatment. In addition to the mask which is clamped down in 3 points (left, right and top centre) they clamped down my right shoulder in a sort of vice to the table. I assume by the end of next week we'll be up to leather shackles, whips and chains...
We all had dinner together. Desney prepared sausages, mashed potatoes, peas and carrots. During dinner I brought up the e-mail from Dr. Girard which led to a rather emotional discussion. It appears as though the rest of the family does not agree with me refusing chemotherapy and they feel I am "taking the easy way out". All I can say is that no one can possibly know how I feel. However it doesn't make any of this any easier for me.
The radiation therapy is starting to really burn my skin and it's gone from red to brown and wrinkled around my throat. The burn comes from the inside so one can only imagine how much worse that is. I hope my skin holds out long enough...
Monday, November 21, 2005
Day 36 - Back to the clinic
A relatively simple day:
I had a really good breakfast (eggs, toast and yogurt) and was able to get all of my medication down and get through my toileteries by lunch time.
Arlene and I went out to lunch to our local restaurant (Le Madrigal). I had a very filling meal (Salade des gesiers, Lentil beans and ham hocks) as did Arlene. She had the Beaujolais Nouveau, which came out on Thursday, and I had water. That's a definite first in my life!
After lunch we headed off to the clinic for my x-ray treatment. Following all of the remeasurements of last week this was the first time that I had the full treatment since. They used to zap me 3 times (once left, once right and once centre). Now they zap me 5 times (twice left, twice right and once centre). This takes a bit longer to set up and carry out. I was sure I was going to really appreciate the additional after effects.
The evening was a bit tough as my throat was really burning. I was able to eat all of dinner (Desney's carrot soup, salad and leftover duck and turkey). But the burning sensation lasted quite some time.
I ended up staying up late watching television... mostly BBC Prime...
I had a really good breakfast (eggs, toast and yogurt) and was able to get all of my medication down and get through my toileteries by lunch time.
Arlene and I went out to lunch to our local restaurant (Le Madrigal). I had a very filling meal (Salade des gesiers, Lentil beans and ham hocks) as did Arlene. She had the Beaujolais Nouveau, which came out on Thursday, and I had water. That's a definite first in my life!
After lunch we headed off to the clinic for my x-ray treatment. Following all of the remeasurements of last week this was the first time that I had the full treatment since. They used to zap me 3 times (once left, once right and once centre). Now they zap me 5 times (twice left, twice right and once centre). This takes a bit longer to set up and carry out. I was sure I was going to really appreciate the additional after effects.
The evening was a bit tough as my throat was really burning. I was able to eat all of dinner (Desney's carrot soup, salad and leftover duck and turkey). But the burning sensation lasted quite some time.
I ended up staying up late watching television... mostly BBC Prime...
Sunday, November 20, 2005
Day 35 – Thanksgiving Sunday
Every American knows that Thanksgiving is on Thursday. However, of course, Thanksgiving is not celebrated outside of America. On Thursday the kids are therefore in school and Desney is at work. As it turns out this year it’s the opening day of our Salon du Vin des Vignerons Indépendants (Independent Winegrowers Wine Exposition). Arlene therefore decided to do Thanksgiving today.
Desney had already gone wide and far to find a turkey yesterday and Arlene woke up in a cooking fury. By the time I got up, about 08:30, Arlene had already kicked Desney out of the kitchen for the day and was cooking up a storm. She soon realised she’d gotten herself in to quite a nightmare. It’s bad enough cooking in a foreign kitchen where you don’t know where anything is or how it works. She’s cooking in a foreign country. The turkeys ain’t the same, the sausage ain’t the same, the herbs ain’t the same… nothing’s the same! Add to this the complication that all of the spices and products in the house are all labelled in French it’s amazing she didn’t poison us! Arlene spent the entire day in the kitchen cooking. Every now and then she’d ask us where something was or what something was. The only really disturbing point appeared to be the potatoes. They had looking all over, yesterday at the markets, for sweet potatoes and hadn’t found any. Sweet potatoes are of course a vegetable indigenous to America and not the European continent. They ended up getting yams from an African store. But yams ain’t sweet potatoes. The colour was all off…
While Arlene cooked Desney had brought some work home and sat proofreading in the living room. I actually went down and hid in my office for several hours and went through some billing, accounting and tax stuff that had to get done. I actually felt quite productive by the end of the day. However I had forgotten to take either one of my two daily naps and realised what a mistake that was later. I took a quick nap at the end of the afternoon but people started arriving by 18:00.
Jessica had her friend Mercedes over and we had my best friend Robbie (the Croat) over. It’s always good to see Robbie if simply just to remind me that I have friends. There is a very special relationship and communication one has with a friend one’s known for almost 20 years. There are so many things we don’t have to say and so many things we can say without any pre- or after-thoughts. It’s always great to spend time with Robbie. It was also interesting to see the reactions between Robbie and Arlene who had not seen each other since Desney and I got married 17 years ago. It was quite fun to watch them politely complimenting each other with snide smiles on their faces.
Dinner was an elaborate affair starting with Champagne for aperitif with olives, nut and sliced sausages. At table we started with some Scottish smoked salmon, a spinach salad done with lemon and olive oil and what looked and smelled like a wonderful Chablis Premier Cru 2001 (Vaillons). The main meal was of course the turkey, which took a while to carve, the sausage stuffing, along with the yams and the green beans sautéed in garlic. The Beaune Premier Cru 2000 red we served looked and smelled great as well. Dessert was a beautiful rich chocolate cake which Desney had picked up at the bakery in the afternoon. We got down from table full to bursting as is customary for the Thanksgiving meal.
Robbie, Arlene and I sat around talking and playing with the computer/TV setup in the living room until late in the evening.
I was able to eat all day and get some things done. It was a good feeling day. The wine on the other hand, as well as my general lack of taste buds, was depressingly frustrating.
Desney had already gone wide and far to find a turkey yesterday and Arlene woke up in a cooking fury. By the time I got up, about 08:30, Arlene had already kicked Desney out of the kitchen for the day and was cooking up a storm. She soon realised she’d gotten herself in to quite a nightmare. It’s bad enough cooking in a foreign kitchen where you don’t know where anything is or how it works. She’s cooking in a foreign country. The turkeys ain’t the same, the sausage ain’t the same, the herbs ain’t the same… nothing’s the same! Add to this the complication that all of the spices and products in the house are all labelled in French it’s amazing she didn’t poison us! Arlene spent the entire day in the kitchen cooking. Every now and then she’d ask us where something was or what something was. The only really disturbing point appeared to be the potatoes. They had looking all over, yesterday at the markets, for sweet potatoes and hadn’t found any. Sweet potatoes are of course a vegetable indigenous to America and not the European continent. They ended up getting yams from an African store. But yams ain’t sweet potatoes. The colour was all off…
While Arlene cooked Desney had brought some work home and sat proofreading in the living room. I actually went down and hid in my office for several hours and went through some billing, accounting and tax stuff that had to get done. I actually felt quite productive by the end of the day. However I had forgotten to take either one of my two daily naps and realised what a mistake that was later. I took a quick nap at the end of the afternoon but people started arriving by 18:00.
Jessica had her friend Mercedes over and we had my best friend Robbie (the Croat) over. It’s always good to see Robbie if simply just to remind me that I have friends. There is a very special relationship and communication one has with a friend one’s known for almost 20 years. There are so many things we don’t have to say and so many things we can say without any pre- or after-thoughts. It’s always great to spend time with Robbie. It was also interesting to see the reactions between Robbie and Arlene who had not seen each other since Desney and I got married 17 years ago. It was quite fun to watch them politely complimenting each other with snide smiles on their faces.
Dinner was an elaborate affair starting with Champagne for aperitif with olives, nut and sliced sausages. At table we started with some Scottish smoked salmon, a spinach salad done with lemon and olive oil and what looked and smelled like a wonderful Chablis Premier Cru 2001 (Vaillons). The main meal was of course the turkey, which took a while to carve, the sausage stuffing, along with the yams and the green beans sautéed in garlic. The Beaune Premier Cru 2000 red we served looked and smelled great as well. Dessert was a beautiful rich chocolate cake which Desney had picked up at the bakery in the afternoon. We got down from table full to bursting as is customary for the Thanksgiving meal.
Robbie, Arlene and I sat around talking and playing with the computer/TV setup in the living room until late in the evening.
I was able to eat all day and get some things done. It was a good feeling day. The wine on the other hand, as well as my general lack of taste buds, was depressingly frustrating.
Saturday, November 19, 2005
Day 34 - Saturday off
A relaxful day at home and yes... another good day.
I'm learning how to deal with the constant throat pain and swallowing pain. I seem to be able to overcome this much more so than the chemo pain.
I had a good breakfast of oatmeal and yogurt and got through all my medication and toileteries by the end of the morning. I went out to the local bakery and got Arlene and myself a couple of sandwiches. The taste wasn't as usual but it was a good feeling to get down a full sandwich.
In the afternoon Arlene and the girls went off for the girls' dental appointment and to stroll around Paris. They spent some time at the Smoking Forever (Tuxedos Forever) exhibit at the Fondation Pierre Bergé - Yves Saint-Laurent. I spent the afternoon asleep.
Desney prepared a delicious meal of duck along with broccoli and cauliflower cheese. I was able to eat a full plate as well as an extra helping of veg. Later in the evening she defrosted and heated up some of her apple crumble and served it up with some vanilla ice cream on top. Unfortunately sweet things just don't seem to taste good any more, hopefully temporarily, and I could only eat about half of it.
In the evening Jessica, Arlene and I watched Collateral on DVD.
I'm learning how to deal with the constant throat pain and swallowing pain. I seem to be able to overcome this much more so than the chemo pain.
I had a good breakfast of oatmeal and yogurt and got through all my medication and toileteries by the end of the morning. I went out to the local bakery and got Arlene and myself a couple of sandwiches. The taste wasn't as usual but it was a good feeling to get down a full sandwich.
In the afternoon Arlene and the girls went off for the girls' dental appointment and to stroll around Paris. They spent some time at the Smoking Forever (Tuxedos Forever) exhibit at the Fondation Pierre Bergé - Yves Saint-Laurent. I spent the afternoon asleep.
Desney prepared a delicious meal of duck along with broccoli and cauliflower cheese. I was able to eat a full plate as well as an extra helping of veg. Later in the evening she defrosted and heated up some of her apple crumble and served it up with some vanilla ice cream on top. Unfortunately sweet things just don't seem to taste good any more, hopefully temporarily, and I could only eat about half of it.
In the evening Jessica, Arlene and I watched Collateral on DVD.
Friday, November 18, 2005
Day 33 – A Good Friday
I hate to say this out loud, as it were, and I’m even more reluctant to put it in writing… but… I had a good day today.
I awoke after a good night’s sleep, thanks to the painkiller up my …, and I was actually able to make myself eggs and toast for breakfast and eat it all along with a yogurt. That made me feel very good about myself as well as almost full. I took my time getting ready afterwards and lunch time came around quicker than I thought.
Arlene wanted to try one of the Greek sandwiches (donner kebab) I had written about on this blog. We went and got one for each of us. They were very nice at the restaurant, as always, and for the first time they even offered us a cup of Turkish tea while we were waiting for our sandwiches. Arlene had hers with harissa sauce, on the side, and I had mine plain. We took our sandwiches back to the house and sat in front of the television, like 2 Americans would, and watched Ballykissangel on the BBC. I have already seen the entire series at least once if not twice. But I have somehow gottten hooked again recently and it’s on weekdays at 14:00 which tends to be just before I fall asleep again in the afternoon.
After lunch, which was both tasty and filling, I had a good nap. Emma arrived to clean the house while I was asleep and the kids got back from school at about 17:00. As my treatments were scheduled for late this evening (19:50) we had changed our plans around. Arlene took the kids out to our local Japanese restaurant (Miyakosushi) for dinner and I went for my treatment. They were kind enough to get me a sushi menu to go so that when I got home dinner was waiting for me and I didn’t have to worry about it getting cold.
The kids went to bed at a relatively reasonable hour as they both have school Saturday morning. I got hooked on something on television… the UK Children in Need telethon, on BBC Prime, and didn’t get to be until after 1:00 in the morning.
I awoke after a good night’s sleep, thanks to the painkiller up my …, and I was actually able to make myself eggs and toast for breakfast and eat it all along with a yogurt. That made me feel very good about myself as well as almost full. I took my time getting ready afterwards and lunch time came around quicker than I thought.
Arlene wanted to try one of the Greek sandwiches (donner kebab) I had written about on this blog. We went and got one for each of us. They were very nice at the restaurant, as always, and for the first time they even offered us a cup of Turkish tea while we were waiting for our sandwiches. Arlene had hers with harissa sauce, on the side, and I had mine plain. We took our sandwiches back to the house and sat in front of the television, like 2 Americans would, and watched Ballykissangel on the BBC. I have already seen the entire series at least once if not twice. But I have somehow gottten hooked again recently and it’s on weekdays at 14:00 which tends to be just before I fall asleep again in the afternoon.
After lunch, which was both tasty and filling, I had a good nap. Emma arrived to clean the house while I was asleep and the kids got back from school at about 17:00. As my treatments were scheduled for late this evening (19:50) we had changed our plans around. Arlene took the kids out to our local Japanese restaurant (Miyakosushi) for dinner and I went for my treatment. They were kind enough to get me a sushi menu to go so that when I got home dinner was waiting for me and I didn’t have to worry about it getting cold.
The kids went to bed at a relatively reasonable hour as they both have school Saturday morning. I got hooked on something on television… the UK Children in Need telethon, on BBC Prime, and didn’t get to be until after 1:00 in the morning.
Thursday, November 17, 2005
Day 32 – New measurements
The pain killer definitely helped me sleep a bit. I got up feeling more rested than I have in quite some time. It didn’t do much for the pain itself as it still feels like someone’s been down my throat with a flame thrower. But I feel better.
I was able to eat a lot more this morning (a full bowl of oatmeal and a yogurt) and got down all of my medicine which felt good. It took hours but it was worth it. At lunch time I actually made myself a tuna salad sandwich and ate all of it.
Feeling newly strengthened I drove to the clinic, with Arlene, for today’s treatment. In addition to the normal treatment today is the day when they redo all the measurements on my body and on my mask to limit the radiation treatment from now on to a smaller area. This is to protect my bone marrow, which is located in the left/right extremes of my neck, which should only get less than 5 weeks, or a certain number of microns, of radiation. From now on they’ll be shooting at a smaller area which may mean just a little bit less of radiation per treatment. But I doubt I’ll notice the difference.
After my normal treatment, which lasted the normal 5 minutes or so, they took me to the x-ray measuring room. This is the same room where they did my measurements originally, the day before my first treatment, and the guy carrying out the measurements was also the same. A very nice gentleman who appears to be of Indian or Pakistani origin but probably more French than I am. It was supposed to take about 30 minutes. That doesn’t sound like a big deal to most people. But lying completely motionless for 30 minutes is actually quite a lot of work on the muscles. I clench my trousers in my hands so as to pull my shoulders down towards my toes, my neck is turned to the left, my torso is placed in a particular position and my waist is slightly tilted in the opposite direction. Added to the fun is the mask which is, as always, latched down in 3 points (left, right and above the head) so my head isn’t going anywhere. I started sweating probably about 20 minutes in to the procedure as it really is quite strenuous. In addition I believe my muscle tone has greatly diminished along with my weight. However just when I thought it would be over soon the technician picks up the phone and starts asking questions to a doctor about the planned measurements and projected radiation treatments. I can’t actually see any of this as my eyes are closed under the mask. However I can hear their discussion. Next thing I know there’s someone else in the room with us and they’re talking and measuring things all over my head and neck. Instead of this taking 30 minutes it took 60 minutes. Once they released me I got up and noticed that the doctor was actually Dr. Mammar who is probably my favourite of all of the doctors I’ve met at the Clinique Hartmann. I let him know that I immediately recognised him and thanked him.
I found Arlene in the waiting room, not quite asleep and probably a bit overwhelmed after spending an hour and a half in a room full of cancer victims, and we headed home. When I got home I was feeling tired after all of the clinic activities and I slept for a bit.
Dinner was fish with rice and peas and I was able to eat a full plate’s worth. It was most gratifying.
Arlene had never seen Shark’s Tale before and we had listened to a couple of songs from the soundtrack in the car. We therefore watched Shark’s Tale on DVD before heading off to sleep.
Overall a better day than the day before…
I was able to eat a lot more this morning (a full bowl of oatmeal and a yogurt) and got down all of my medicine which felt good. It took hours but it was worth it. At lunch time I actually made myself a tuna salad sandwich and ate all of it.
Feeling newly strengthened I drove to the clinic, with Arlene, for today’s treatment. In addition to the normal treatment today is the day when they redo all the measurements on my body and on my mask to limit the radiation treatment from now on to a smaller area. This is to protect my bone marrow, which is located in the left/right extremes of my neck, which should only get less than 5 weeks, or a certain number of microns, of radiation. From now on they’ll be shooting at a smaller area which may mean just a little bit less of radiation per treatment. But I doubt I’ll notice the difference.
After my normal treatment, which lasted the normal 5 minutes or so, they took me to the x-ray measuring room. This is the same room where they did my measurements originally, the day before my first treatment, and the guy carrying out the measurements was also the same. A very nice gentleman who appears to be of Indian or Pakistani origin but probably more French than I am. It was supposed to take about 30 minutes. That doesn’t sound like a big deal to most people. But lying completely motionless for 30 minutes is actually quite a lot of work on the muscles. I clench my trousers in my hands so as to pull my shoulders down towards my toes, my neck is turned to the left, my torso is placed in a particular position and my waist is slightly tilted in the opposite direction. Added to the fun is the mask which is, as always, latched down in 3 points (left, right and above the head) so my head isn’t going anywhere. I started sweating probably about 20 minutes in to the procedure as it really is quite strenuous. In addition I believe my muscle tone has greatly diminished along with my weight. However just when I thought it would be over soon the technician picks up the phone and starts asking questions to a doctor about the planned measurements and projected radiation treatments. I can’t actually see any of this as my eyes are closed under the mask. However I can hear their discussion. Next thing I know there’s someone else in the room with us and they’re talking and measuring things all over my head and neck. Instead of this taking 30 minutes it took 60 minutes. Once they released me I got up and noticed that the doctor was actually Dr. Mammar who is probably my favourite of all of the doctors I’ve met at the Clinique Hartmann. I let him know that I immediately recognised him and thanked him.
I found Arlene in the waiting room, not quite asleep and probably a bit overwhelmed after spending an hour and a half in a room full of cancer victims, and we headed home. When I got home I was feeling tired after all of the clinic activities and I slept for a bit.
Dinner was fish with rice and peas and I was able to eat a full plate’s worth. It was most gratifying.
Arlene had never seen Shark’s Tale before and we had listened to a couple of songs from the soundtrack in the car. We therefore watched Shark’s Tale on DVD before heading off to sleep.
Overall a better day than the day before…
Keep those cards and letters coming!!!
I do not have the time or energy (yet) to thank you all individually for the amazing amount of cards, letters, e-mails, messages, flowers and even gifts I have received and continue to receive. Every single one of them is a boost of strength for me. There is an incredibly large number of people out there rooting for me.
The simple thought that there are people out there sending me their best wishes, prayers and most positive thoughts is quite bolstering. I am not alone.
Every day I get a little something… a message just to let me know “we’re thinking of you… you’ll pull through” or “our thoughts and prayers are with you” or “keep you chin up!”. It’s the fact that the messages still keep coming that feels so great. It’s been a long time and I haven’t been forgotten. This without any communication whatsoever on my part!
I’ll be feeling a bit down and a dear friend will send me a smiling photo of Desney and I in our pre-cancer days (mid-July 2005!) having a great time with great people. It brought a smile to my face and warmth to my heart. The mail arrives and there’s a Garfield book in there to cheer me up for an evening. Someone even sent me a DVD of the 25th anniversary of Saturday Night Live which I have probably watched a half dozen times now and still makes me laugh. I get some absolutely beautiful cards. I have one which is a beautiful watercolour done by hand by the person who sent it which stares at me every day. I have a collection of cards in the living room all displayed and all looking at me to remind me.
I honestly don’t know what to say. I can’t begin to express how important the smallest of little messages are and the fact that they keep coming.
All I can do is request: don’t stop!
The simple thought that there are people out there sending me their best wishes, prayers and most positive thoughts is quite bolstering. I am not alone.
Every day I get a little something… a message just to let me know “we’re thinking of you… you’ll pull through” or “our thoughts and prayers are with you” or “keep you chin up!”. It’s the fact that the messages still keep coming that feels so great. It’s been a long time and I haven’t been forgotten. This without any communication whatsoever on my part!
I’ll be feeling a bit down and a dear friend will send me a smiling photo of Desney and I in our pre-cancer days (mid-July 2005!) having a great time with great people. It brought a smile to my face and warmth to my heart. The mail arrives and there’s a Garfield book in there to cheer me up for an evening. Someone even sent me a DVD of the 25th anniversary of Saturday Night Live which I have probably watched a half dozen times now and still makes me laugh. I get some absolutely beautiful cards. I have one which is a beautiful watercolour done by hand by the person who sent it which stares at me every day. I have a collection of cards in the living room all displayed and all looking at me to remind me.
I honestly don’t know what to say. I can’t begin to express how important the smallest of little messages are and the fact that they keep coming.
All I can do is request: don’t stop!
Wednesday, November 16, 2005
Day 31 – Dr. Kanoui
Still in a lot of pain and not sleeping well.
Back to the clinic, at the end of the day, for treatment and to see Dr. Kanoui. Desney met me at the clinic so we could talk to him together. He examined my throat, which didn’t take long as I almost threw up all over him, and was not surprised by my condition. My throat is apparently quite “touched” by the treatment. It’s both irritated, burnt and even may have a bit of a fungus or something. He gave me a bunch of new medication for the throat. Unfortunately none of the medicine he prescribed will actually make it feel any better. It will mostly protect it, disinfect it and preserve it. He noticed that I have lost my voice, which didn’t require Holmesian detective abilities, and said it was normal. We talked about pain killers and he was kind enough to prescribe some suppositories, which I hate but which are practically my only choice as I can not swallow pills at the moment, which may at the very least help me sleep. We spoke about my weight and he was quite adamant about the fact that I have to eat and get my weight back up. I can’t continue like this. He brought up the possibility of delaying the treatment for a week so as to allow me to recuperate and build myself back up a bit. We’ll discuss that next week. We then spoke about the chemotherapy and I told him that I wanted to envisage the possibility of not going through with the last series of chemotherapy. He was willing to delay the last series, by a week, but he feels I must go through with it. I disagree. But I did not go on about it as apparently “we” will decide next Wednesday.
In the evening there just happened to be a program on TV (Ca se discute) about cancer. It’s a combination panel discussion, with cancer victims, families, an oncologist, a psychologist, …), and sort of mini-documentaries as they have filmed each guest’s home life (treatment (chemo and x-ray therapy), relationships, home life, …). It was extremely well done and quite informative. I can relate instantly to what most of the cancer “victims” had to say. I realised, a little bit more, that I truly am a cancer victim and will forever be part of a group of a very different type of people with a completely different outlook on life.
The show ended a bit late (01:00). I took my suppository like a good boy and went to bed. It did help me sleep…
Back to the clinic, at the end of the day, for treatment and to see Dr. Kanoui. Desney met me at the clinic so we could talk to him together. He examined my throat, which didn’t take long as I almost threw up all over him, and was not surprised by my condition. My throat is apparently quite “touched” by the treatment. It’s both irritated, burnt and even may have a bit of a fungus or something. He gave me a bunch of new medication for the throat. Unfortunately none of the medicine he prescribed will actually make it feel any better. It will mostly protect it, disinfect it and preserve it. He noticed that I have lost my voice, which didn’t require Holmesian detective abilities, and said it was normal. We talked about pain killers and he was kind enough to prescribe some suppositories, which I hate but which are practically my only choice as I can not swallow pills at the moment, which may at the very least help me sleep. We spoke about my weight and he was quite adamant about the fact that I have to eat and get my weight back up. I can’t continue like this. He brought up the possibility of delaying the treatment for a week so as to allow me to recuperate and build myself back up a bit. We’ll discuss that next week. We then spoke about the chemotherapy and I told him that I wanted to envisage the possibility of not going through with the last series of chemotherapy. He was willing to delay the last series, by a week, but he feels I must go through with it. I disagree. But I did not go on about it as apparently “we” will decide next Wednesday.
In the evening there just happened to be a program on TV (Ca se discute) about cancer. It’s a combination panel discussion, with cancer victims, families, an oncologist, a psychologist, …), and sort of mini-documentaries as they have filmed each guest’s home life (treatment (chemo and x-ray therapy), relationships, home life, …). It was extremely well done and quite informative. I can relate instantly to what most of the cancer “victims” had to say. I realised, a little bit more, that I truly am a cancer victim and will forever be part of a group of a very different type of people with a completely different outlook on life.
The show ended a bit late (01:00). I took my suppository like a good boy and went to bed. It did help me sleep…
Tuesday, November 15, 2005
Day 30 – Back to the Clinic
It’s been very nice having 4 days off and I certainly needed them.
Woke up still with the constant pain swallowing and retching every now and then. I think the family is getting sick of hearing me throughout the day sound like I’m just about to throw up. I know I am!
I drove Arlene to the clinic with me. She waited in the waiting room while I had my treatment, which didn’t take long, and while I saw the doctor. I asked to see a doctor when I arrived so as to hopefully get some sort of medicine for my throat and extremely thick saliva.
The doctor was quite nice and sympathetic. He was not pleased with my rather extreme weight loss and prescribed some protein drinks to help build my weight back up. Talking about my extremely negative reactions to the chemotherapy he agreed that it may very well be preferable that I do not go through with the third series of chemotherapy. It felt very good to finally hear someone else, especially a doctor, say that was a possibility. Unfortunately, however, there is nothing anyone can do about my thick saliva which sets off my vomit reflex in my throat and which goes down like acidic sandpaper.
We went home and I tried to get down dinner. Dinner was delicious (salad, cold meats, cheese, …). But I couldn’t get much of it down.
Woke up still with the constant pain swallowing and retching every now and then. I think the family is getting sick of hearing me throughout the day sound like I’m just about to throw up. I know I am!
I drove Arlene to the clinic with me. She waited in the waiting room while I had my treatment, which didn’t take long, and while I saw the doctor. I asked to see a doctor when I arrived so as to hopefully get some sort of medicine for my throat and extremely thick saliva.
The doctor was quite nice and sympathetic. He was not pleased with my rather extreme weight loss and prescribed some protein drinks to help build my weight back up. Talking about my extremely negative reactions to the chemotherapy he agreed that it may very well be preferable that I do not go through with the third series of chemotherapy. It felt very good to finally hear someone else, especially a doctor, say that was a possibility. Unfortunately, however, there is nothing anyone can do about my thick saliva which sets off my vomit reflex in my throat and which goes down like acidic sandpaper.
We went home and I tried to get down dinner. Dinner was delicious (salad, cold meats, cheese, …). But I couldn’t get much of it down.
Monday, November 14, 2005
Day 29 – Monday off
No treatment today (again). Four days without going to the clinic is wonderful. I hope I’ve started to recuperate to be ready for tomorrow. My weight loss is starting to worry me. I lost 5 kilos in September and October and I’ve lost another 4 kilos since I’ve started the treatment (4 kilos in 4 weeks). I obviously needed to lose a bit of weight. Before treatment I was looking good (at 80 kg). But now, at 76 kg, I feel like I’m actually starting to look and feel like a cancer victim. I am very weak and tired all the time.
Although I still have a slight bit of nausea all the time, which should have been gone by now, the main pain has come back to my throat. Each time I swallow it’s like sandpaper inside my throat. I’ll have to wait till tomorrow and ask to see a doctor to see if there’s something else we can do.
Desney made a wonderful shiksa chicken soup for all of us. She had actually spent Sunday evening making it a long with the roast lamb. It was great and I was able to get down a full two bowls.
It’s getting difficult to sleep now as the painful swallowing makes me retch and almost vomit. I’m up and down throughout the night which obviously isn’t making Desney’s sleep any easier either…
[Entered on 15/11/05]
Although I still have a slight bit of nausea all the time, which should have been gone by now, the main pain has come back to my throat. Each time I swallow it’s like sandpaper inside my throat. I’ll have to wait till tomorrow and ask to see a doctor to see if there’s something else we can do.
Desney made a wonderful shiksa chicken soup for all of us. She had actually spent Sunday evening making it a long with the roast lamb. It was great and I was able to get down a full two bowls.
It’s getting difficult to sleep now as the painful swallowing makes me retch and almost vomit. I’m up and down throughout the night which obviously isn’t making Desney’s sleep any easier either…
[Entered on 15/11/05]
Sunday, November 13, 2005
Day 28 – Sunday Dinner
Finally started feeling a bit better today. Still weak and tired and nauseous. I was able to eat a bit at breakfast and a bit at lunch and Desney made Sunday dinner: roast lamb with a wonderful garlic sauce, potatoes and broccoli. I was able to eat a bit of everything and started feeling better.
[Entered on 15/11/05]
[Entered on 15/11/05]
Saturday, November 12, 2005
Day 27 – Arlene is in da house!
I woke up still not feeling great. But it’s a special day. My mother, Arlene, arrived from New York at 10:00. They lost one of her suitcases so she didn’t get out of the airport until about 11:30 and was at our place a little after noon. This gave me time to get through the morning, trying to feel better, and to shower before she arrived.
It was great to see her. But I was not feeling well… it was a long day of trying to talk without throwing up…
Arlene brought lots and lots of presents for everyone. We spent a lot of time opening the gifts, trying to figure out what they were and then playing with them… We all sat around talking most of the day. I wasn’t exactly an active participant. However I was able to eat a bit at the end of the day which made me feel better, at least psychologically.
[Entered on 15/11/05]
It was great to see her. But I was not feeling well… it was a long day of trying to talk without throwing up…
Arlene brought lots and lots of presents for everyone. We spent a lot of time opening the gifts, trying to figure out what they were and then playing with them… We all sat around talking most of the day. I wasn’t exactly an active participant. However I was able to eat a bit at the end of the day which made me feel better, at least psychologically.
[Entered on 15/11/05]
Friday, November 11, 2005
Day 26 – TGIF?
Woke up feeling awful again and still the constant nausea. I’m starting to get worried as I haven’t eaten since Wednesday afternoon and it’s now Friday evening. The nausea lasted all day while I tried to relax around the house. I threw up again in the evening before going to sleep.
[Entered on 15/11/05]
[Entered on 15/11/05]
Thursday, November 10, 2005
Day 25 – Things could get worse
I got up feeling awful. The nausea just didn’t stop and I actually threw up, repeatedly, before lunch. I tried to get some food down before going to the clinic. Luckily today they just had to remove the pump.
I asked to see the doctor as I was feeling absolutely awful and having great, great difficulty swallowing. Desney and I saw Dr. Kanoui for a while and talked a lot. He was a lot more open during this meeting than in most of the previous consultations. He prescribed a series of medicine for my throat and hoped I would feel better by the weekend when the chemicals should work their way out of my body.
Went home, ate a quick dinner and passed out feeling awful.
[Entered on 15/11/05]
I asked to see the doctor as I was feeling absolutely awful and having great, great difficulty swallowing. Desney and I saw Dr. Kanoui for a while and talked a lot. He was a lot more open during this meeting than in most of the previous consultations. He prescribed a series of medicine for my throat and hoped I would feel better by the weekend when the chemicals should work their way out of my body.
Went home, ate a quick dinner and passed out feeling awful.
[Entered on 15/11/05]
Wednesday, November 09, 2005
Day 24 – Had a Bad Day
I had a bad day…
Woke up with the shivers and went in to the clinic. They started treatment and it didn’t go well. This time I had the shivers before they even started and they just got worse. They treated me with extra anti-nausea medication and some cortisone. They called in Dr. Kanoui to check up on me and because of all of the extra care I didn’t get out of there until late in the evening. Came home absolutely exhausted and passed out on the couch. No dinner…
Music today was brought to me by Kenny Burrell, Claude Bolling / Jean-Pierre Rampal, Roy Hargrove and some Robin Williams comedy.
I didn’t turn on my computer again at all today…
[Entered on 15/11/05]
Woke up with the shivers and went in to the clinic. They started treatment and it didn’t go well. This time I had the shivers before they even started and they just got worse. They treated me with extra anti-nausea medication and some cortisone. They called in Dr. Kanoui to check up on me and because of all of the extra care I didn’t get out of there until late in the evening. Came home absolutely exhausted and passed out on the couch. No dinner…
Music today was brought to me by Kenny Burrell, Claude Bolling / Jean-Pierre Rampal, Roy Hargrove and some Robin Williams comedy.
I didn’t turn on my computer again at all today…
[Entered on 15/11/05]
Tuesday, November 08, 2005
Day 23 – Chemo D2
The day didn’t start well and basically went downhill from there.
Painful nausea and throat right from the morning. I was able to get through breakfast and my shower just in time to get back to the clinic for chemotherapy day 2.
Luckly I had my iPod to keep me thinking of something else during the treatments. Today was The Modern Jazz Quartet and then Joe Pass and then James Carter. I didn’t feel great when I went and I felt even worse when I came home.
Then the shivers started in the evening. Not quite convulsions but non-stop shivers that I just couldn’t control.
I didn’t turn my computer on at all today. It was a long day and a long night…
[Entered on 15/11/05]
Painful nausea and throat right from the morning. I was able to get through breakfast and my shower just in time to get back to the clinic for chemotherapy day 2.
Luckly I had my iPod to keep me thinking of something else during the treatments. Today was The Modern Jazz Quartet and then Joe Pass and then James Carter. I didn’t feel great when I went and I felt even worse when I came home.
Then the shivers started in the evening. Not quite convulsions but non-stop shivers that I just couldn’t control.
I didn’t turn my computer on at all today. It was a long day and a long night…
[Entered on 15/11/05]
Monday, November 07, 2005
Day 22 – Back in Chemo
The day I’ve been dreading for 2 weeks.
No problems in the morning. It took me a good hour to get down breakfast and all of the pre-medication I have to take (anti-nausea, relaxants, corticoids, laxative, potassium, …).
I got to the clinic on time and met with a new doctor. He checked out my blood test results and approved my continuing chemo. I explained to him that I wasn’t able to swallow the large potassium tablets and he prescribed a potassium liquid instead. He asked how the last chemo week had gone and we (Desney was with me) told him. He was apparently not too worried about the constant nausea and pleased there wasn’t too much vomiting. Easy for him…. He’s on the other side!
The x-ray treatments went by quickly and then back to chemo. They were completely booked up and didn’t have any more chairs in the chemo room. I therefore got a private room with a bed and my own toilet. What a luxury! Even with the Emla Patch I had put on injecting the catheter hurt this time. But once the fluid started pumping I just kicked back and listened to my music. Three and a half hours later they removed the last perf bag and replaced it with my pump and I left. Desney came to pick me up and we took a taxi home.
At home I just sat around most of the evening. It felt good to be able to eat so I had soup and pasta to try and fatten myself up as much as possible before the days when I can’t eat arrive.
All in all not too bad a start…
No problems in the morning. It took me a good hour to get down breakfast and all of the pre-medication I have to take (anti-nausea, relaxants, corticoids, laxative, potassium, …).
I got to the clinic on time and met with a new doctor. He checked out my blood test results and approved my continuing chemo. I explained to him that I wasn’t able to swallow the large potassium tablets and he prescribed a potassium liquid instead. He asked how the last chemo week had gone and we (Desney was with me) told him. He was apparently not too worried about the constant nausea and pleased there wasn’t too much vomiting. Easy for him…. He’s on the other side!
The x-ray treatments went by quickly and then back to chemo. They were completely booked up and didn’t have any more chairs in the chemo room. I therefore got a private room with a bed and my own toilet. What a luxury! Even with the Emla Patch I had put on injecting the catheter hurt this time. But once the fluid started pumping I just kicked back and listened to my music. Three and a half hours later they removed the last perf bag and replaced it with my pump and I left. Desney came to pick me up and we took a taxi home.
At home I just sat around most of the evening. It felt good to be able to eat so I had soup and pasta to try and fatten myself up as much as possible before the days when I can’t eat arrive.
All in all not too bad a start…
Sunday, November 06, 2005
Day 21 – The calm before the storm
My last day before chemo starts again. It was also a day with no treatment or tests or anyone else doing things to my body without my control.
I spent most of the day trying to work on and finish things I knew I would not be able to do next week. I did a lot of e-mail work and some preparation work for my assistant in London and a lot of accounting and bookkeeping. Desney spent a good portion of the day cooking and making meals for the rest of the week in preparation. She accepts that a good portion of her week will be spent taking care of me and she’s preparing so that the family has good food to eat throughout. The kitchen smelled wonderful all day.
Alexandra had a friend over in the afternoon and Jessica had a friend come over for dinner and sleepover. Dinner was fun with everyone enjoying a nice bottle of Côte de Charmes’ Morgon ’99 which looked and smelled delicious.
Everyone went to bed at their normal times as they all have school and work tomorrow. I stayed up as late as I could as I knew that when I went to sleep and woke up it would be chemo day again.
Tomorrow starts my second week, out of three (hopefully), of chemotherapy. I am now both scared and sad. Scared because I now know much better what it’s going to be like and am aware that, with the cumulated effect of 3 weeks of radiation, it’s going to be worse. Sad because I know I have to go through with it. I have three wonderful reasons to go through all of this and I see them every day and every night at home to remind me that it’s all worth it in the end…
I spent most of the day trying to work on and finish things I knew I would not be able to do next week. I did a lot of e-mail work and some preparation work for my assistant in London and a lot of accounting and bookkeeping. Desney spent a good portion of the day cooking and making meals for the rest of the week in preparation. She accepts that a good portion of her week will be spent taking care of me and she’s preparing so that the family has good food to eat throughout. The kitchen smelled wonderful all day.
Alexandra had a friend over in the afternoon and Jessica had a friend come over for dinner and sleepover. Dinner was fun with everyone enjoying a nice bottle of Côte de Charmes’ Morgon ’99 which looked and smelled delicious.
Everyone went to bed at their normal times as they all have school and work tomorrow. I stayed up as late as I could as I knew that when I went to sleep and woke up it would be chemo day again.
Tomorrow starts my second week, out of three (hopefully), of chemotherapy. I am now both scared and sad. Scared because I now know much better what it’s going to be like and am aware that, with the cumulated effect of 3 weeks of radiation, it’s going to be worse. Sad because I know I have to go through with it. I have three wonderful reasons to go through all of this and I see them every day and every night at home to remind me that it’s all worth it in the end…
Saturday, November 05, 2005
Day 20 – Passed my test
I had set my alarm and woke up early (7:00), jumped in the shower and then paced around for awhile. I couldn’t eat. At 7:45 I went to the lab for my pre-chemo blood test. It wasn’t as bad as I thought it was going to be. He was pretty gentle. I explained I needed the results today and went home. At home I had a slow breakfast and lied around for most of the morning. At 13:30 I went to pick up my results.
I passed with flying colours. Absolutely every test was at normal levels. My kidneys are fine, my liver’s fine, my white blood cells are fine, my antibodies are fine and I still don’t have AIDS. This is all really good news as it means I shouldn’t have to have any supplementary treatment in addition to the chemo. I’ve seen others in the chemo room who have to get injections every day or worse (blood transfusions). I was very pleased with myself as it shows that my body is fighting off the chemotherapy correctly.
I spent the afternoon doing some accounting and correspondence and things I knew I would not be capable of doing next week. Desney spent most of the day shopping and then the late afternoon in the back garden working on the lawn. Once upon a time I did most of the lawn maintenance. But everything’s out of my hands at the moment…
Desney prepared a Choucroute. It was delicious. I seem to be able to handle salty foods much more so than sweet or spicy. Add a bit of Dijon mustard and this was great. I was able to get down half of an Alsatian beer while I watched the rest of the family finish off a wonderful bottle of André Ehrhart’s Gewurztraminer.
I finished my book: the first in the "In Death" series (Naked in Death) by J.D. Robb. Now I can get started on the second one (Glory in Death).
I passed with flying colours. Absolutely every test was at normal levels. My kidneys are fine, my liver’s fine, my white blood cells are fine, my antibodies are fine and I still don’t have AIDS. This is all really good news as it means I shouldn’t have to have any supplementary treatment in addition to the chemo. I’ve seen others in the chemo room who have to get injections every day or worse (blood transfusions). I was very pleased with myself as it shows that my body is fighting off the chemotherapy correctly.
I spent the afternoon doing some accounting and correspondence and things I knew I would not be capable of doing next week. Desney spent most of the day shopping and then the late afternoon in the back garden working on the lawn. Once upon a time I did most of the lawn maintenance. But everything’s out of my hands at the moment…
Desney prepared a Choucroute. It was delicious. I seem to be able to handle salty foods much more so than sweet or spicy. Add a bit of Dijon mustard and this was great. I was able to get down half of an Alsatian beer while I watched the rest of the family finish off a wonderful bottle of André Ehrhart’s Gewurztraminer.
I finished my book: the first in the "In Death" series (Naked in Death) by J.D. Robb. Now I can get started on the second one (Glory in Death).
Friday, November 04, 2005
Day 19
Early day today as my treatment appointment was early. I was able to get through the morning fine and had an early lunch. I actually had another Greek sandwich with chips. But without harissa sauce this time. I was able to eat all of it and actually felt good with a bit of a greasy junk food rush. I drove to the clinic for my treatment and afterwards I got my schedule for the week after next’s treatments. I’ll be starting the following Tuesday which is really good news for me. That means that I’ll have four days, after the end of chemo, with no treatment. Next week I have chemo (and radiation) from Monday through Thursday and then nothing from Friday through Monday and then radiation only from Tuesday through Friday.
I slept most of the afternoon as usual. In the evening Desney had to work late as she has a looming publication deadline. The girls and I ordered pizza (Pizza Hut) and I sent Jessica out to rent an action movie. She came home with The Transporter which unintentionally laughably filled the bill. A lot of fun.
I slept most of the afternoon as usual. In the evening Desney had to work late as she has a looming publication deadline. The girls and I ordered pizza (Pizza Hut) and I sent Jessica out to rent an action movie. She came home with The Transporter which unintentionally laughably filled the bill. A lot of fun.
Thursday, November 03, 2005
Day 18 - Uneventful
Not much to say about today as I didn't do much.
Spent the morning getting ready and doing a bit of professional e-mail. Had a quick lunch and went to the clinic for my x-ray treatment.
I tried driving to the clinic today. It was wonderful. It was a great feeling to be in control. I wasn't waiting for the bus wondering if it would be on time. I wasn't wandering around wondering what to do when I invariably turn up early and there's nothing in the neighbourhood. I was in control. It was great to drive and be in my own little world listening to my tunes on the stereo. In and out for my treatment in about 20 minutes and back on the road again for home.
When I got home I went to the chemists and got the rest of my medication. I then fell asleep for most of the afternoon.
I tried the new numbing stuff at dinner time. The phosphalugel went down reasonably well. I only retched twice. The xylocaine however, as it's much thicker, had much more difficulty going down and Desney handed me a bucket and asked I did that in the bathroom just in case. The xylocaine numbed my mouth and the top of my throat but just didn't hit the swallowing mechanism which still hurt. I'm not sure I'll try again and I'm certain I will not be able to use either of these products during chemo week when it is almost certain I would throw it all up.
Starting to count the days to the start of chemo again...
Spent the morning getting ready and doing a bit of professional e-mail. Had a quick lunch and went to the clinic for my x-ray treatment.
I tried driving to the clinic today. It was wonderful. It was a great feeling to be in control. I wasn't waiting for the bus wondering if it would be on time. I wasn't wandering around wondering what to do when I invariably turn up early and there's nothing in the neighbourhood. I was in control. It was great to drive and be in my own little world listening to my tunes on the stereo. In and out for my treatment in about 20 minutes and back on the road again for home.
When I got home I went to the chemists and got the rest of my medication. I then fell asleep for most of the afternoon.
I tried the new numbing stuff at dinner time. The phosphalugel went down reasonably well. I only retched twice. The xylocaine however, as it's much thicker, had much more difficulty going down and Desney handed me a bucket and asked I did that in the bathroom just in case. The xylocaine numbed my mouth and the top of my throat but just didn't hit the swallowing mechanism which still hurt. I'm not sure I'll try again and I'm certain I will not be able to use either of these products during chemo week when it is almost certain I would throw it all up.
Starting to count the days to the start of chemo again...
Wednesday, November 02, 2005
Day 17 – Back to the Doctor
Today was a bit tough… the pain swallowing and yawning has become constant and, well, painful.
Jessica went off to do some book shopping as she needed to (finally) get some required books for school that she should have gotten at the beginning of the holidays rather than the end of the holidays. Alexandra went off to La Défense to meet with Desney and do some lunchtime shopping.
I was therefore home alone. I was able to eat a light lunch (soup and rice) and headed off to the clinic for today’s treatment. The treatment was easy as always and they were running a half hour late. I asked to see a doctor and eventually was ushered in to see Dr. Kanoui. He was actually much kinder this time and apparently had more time. He examined my throat and prescribed a whole bunch of medication which should help me eat (local anaesthesia for my throat, corticoids, potassium supplements, …). As soon as I got off the bus home I went to the chemists to get my medication. They had everything in stock except for the most important (xylocaine – the internal anaesthesia gel) so I have to wait until tomorrow morning for that.
I went home and to sleep for a couple of hours on the couch. I had difficulty eating dinner but I did get down some solids. I spent the rest of the night wincing every time I swallowed.
If you were to ever think about it and count how many times you swallow in an hour you can then imagine how tiring it would be if every single one of those swallows felt like sandpaper in the middle of your throat and someone slicing at you from the inside…
Jessica went off to do some book shopping as she needed to (finally) get some required books for school that she should have gotten at the beginning of the holidays rather than the end of the holidays. Alexandra went off to La Défense to meet with Desney and do some lunchtime shopping.
I was therefore home alone. I was able to eat a light lunch (soup and rice) and headed off to the clinic for today’s treatment. The treatment was easy as always and they were running a half hour late. I asked to see a doctor and eventually was ushered in to see Dr. Kanoui. He was actually much kinder this time and apparently had more time. He examined my throat and prescribed a whole bunch of medication which should help me eat (local anaesthesia for my throat, corticoids, potassium supplements, …). As soon as I got off the bus home I went to the chemists to get my medication. They had everything in stock except for the most important (xylocaine – the internal anaesthesia gel) so I have to wait until tomorrow morning for that.
I went home and to sleep for a couple of hours on the couch. I had difficulty eating dinner but I did get down some solids. I spent the rest of the night wincing every time I swallowed.
If you were to ever think about it and count how many times you swallow in an hour you can then imagine how tiring it would be if every single one of those swallows felt like sandpaper in the middle of your throat and someone slicing at you from the inside…
Tuesday, November 01, 2005
Day 16 – All Saint’s Day
Today’s a holiday here in France so the family is still home and I don’t have any treatment.
Awoke a bit late and spent my time getting ready as usual. Desney spent almost the entire day out in the garden refencing a portion of the flower/plant garden in the back. I spent almost the entire day on the couch either relaxing and watching TV or asleep.
The constant swallowing pain in my throat is getting worse and worse. I was able to eat, albeit painfully, all 3 meals. But I am truly hoping the doctor is going to be able to give me some sort of local painkiller tomorrow.
Awoke a bit late and spent my time getting ready as usual. Desney spent almost the entire day out in the garden refencing a portion of the flower/plant garden in the back. I spent almost the entire day on the couch either relaxing and watching TV or asleep.
The constant swallowing pain in my throat is getting worse and worse. I was able to eat, albeit painfully, all 3 meals. But I am truly hoping the doctor is going to be able to give me some sort of local painkiller tomorrow.
Monday, October 31, 2005
Day 15 – Halloween II
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.
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.
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…
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