New Year's Eve

Probably our saddest New Year’s Eve ever.

I spent most of the day feeling downright awful. I’ve been coughing and crying constantly and in a lot of pain throughout most of the day. I’m sure the rest of the family is truly sick and tired of listening to me.

I did manage to go out and get the necessary sustenance for the evening. I got 3dozen oysters and 3 dozen of the biggest prawns known to man (from Madagascar). The things looked radioactive they were so big. And they were the medium size! There was one size bigger. The prawns cost a fortune. But as I wasn’t buying lobster this year I didn’t think it was a big deal. There was no point getting lobster if I can’t really taste it or enjoy it. As I’m the only big lobster eater in the family the rest of the family didn’t mind. Desney prepared smoked salmon and all of her delicious sauces to accompany the shellfish and we had a great meal. Unfortunately no one seemed to eat a lot and we’re going to be eating prawns for the next few days. As it was New Year’s and all, and as I have successfully been drinking tea for the past few days, I thought I’d try a tiny glass of wine. I had a sip of our favourite Alsatian’s Gewurztraminer. It tasted delicious in my mouth and was a great feeling. Then I swallowed. The alcohol on the walls of my throat was torture and I cried for a few seconds both in pain and the realisation that I ain’t there yet.

Desney hadn’t been feeling well most of the day as well… extremely tired probably due to my keeping her up at night. Luckily for Jessica she was invited to a party at a family we know well. After dinner I drove Jessica to the party. I’m glad we let her go as I’m sure she had some fun with people in a party atmosphere and mood. Alex and I sat up until midnight watching a sort of circus on television and hugged each other Happy New Year. I sent out about a dozen textos wishing friends and family Happy New Year and went to bed….

Another Friday night

We spent the evening watching a movie as usual. However rather than take out Desney prepared us all sorts of snack food (hot and cold) to eat during the movie (hot sausages, pizza bits, chicken wings, crisps, salsa sauce, nuts, …).

This evening we watched one of the movies Arlene had bought for us when she was here: Million Dollar Baby. I loved it and thought it was a beautiful movie. The rest of my family was baffled as to how the movie won so many awards. There was no action to speak of, the lead characters weren’t beautiful, there weren’t any well-defined bad guys and good guys, there were no spectacular special effects, there weren’t even cute one-liners throughout: where is the merit?

After the movie, and after Alex had gone to sleep, Jessica and I played a game that Arlene got me for Christmas: The Da Vinci Quest. It’s sort of a trivial pursuit with references throughout to Da Vinci, the Renaissance period, the quest for the grail, various relevant mythological references, … It was quite fun and I think Jessica did better than she thought she would. I won, of course, but it’s only the first time we’ve played.

Next time we'll play it with Arlene!

A Good Day

A landmark evening. First of all I slept in my bed with my wife. It’s not what you think… we’re not talking biblical knowledge or anything. But the simple pleasure of sleeping with my wife. What was landmark was the fact that I slept through the entire evening, until about 09:30, without any coughing attacks and without having to get up in the middle of the night. I would cough every now and then throughout the night but it was more than bearable. I woke up stunned and pleasantly surprised.

The morning was reasonably tense as we were all preparing the departure of my in-laws for the airport just after noon. They left on time, got to the airport early and apparently their flight went well.

As I had received the last accounting information I needed from my account I spent most of the afternoon working on our very, very late tax declaration. It was a great feeling to finally finish that, sign it and get it in an envelope ready to go tomorrow.

Dinner went down well and I’m definitely starting to enjoy ice cream again for dessert. Another landmark, to the great pleasure of my British wife, was that I was able to drink a cup of tea after dinner. Not only was it not painful but I could actually taste the tea and it was quite enjoyable. I should be cured within a week as any Brit can tell you that a cup of tea will cure anything… probably even cancer. One only has to watch the BBC for a day or so to realise. They have tons of medical programs (Casualty, Doctors, Holby City, …) and in each it doesn’t matter what the patient is suffering from, and sometimes even the health specialists, everyone needs and gets a “cuppa”.

In the evening Jess and I sat around and watched Swordfish which I had rented from DVD Fly. I needed to watch it so as to send it off and get my next allotment of films. I thought it would be too violent for Alex and therefore we should watch it without her. I was wrong. From a genre point of view it was standard Joel Silver-produced action thriller stuff. However great actors (John Travolta, Hugh Jackman, Halle Berry, Don Cheadle, …) having a great time. It was definitely worth it. But it should have been one of our family Friday evening fun flicks.

Boxing Day

A definitely better night! I got up at 3 but that was just nature calling. There is an obvious side-effect to drinking water all day. But I slept through until 07:30 only coughing maybe three times in the night. The difference was I tried sleeping more horizontally this time rather than sitting up. I'm going to try again tomorrow night, on the couch, and if it works I'll be able to sleep with my wife again which is priceless.

The rest of the day was quite uneventful, as Boxing Day should be. We just sat around all day watching TV or reading or doing puzzles (crosswords, sudokus, ...). Desney got me a set of DVDs of Buster Keaton shorts. They're wonderful classis. I watched the first couple of shorts which were actually Fatty Arbuckle shorts with Buster Keaton having a small role. I've always found Fatty to be rather grotesque. But my opinion may be biased by the knowledge of the various rape and other sex crimes he was falsely accused of. I can't wait to get up to the "real" Keaton shorts.

Alexandra got me a boxed set of Marx Brothers DVDs which I want to watch with the kids. Desney and I realised recently how many of our classic film references our kids are not aware of. This is in part due to the fact that we don't live in an Anglophone country and therefore do not get the classics on tele. I am going to love rewatching the classics, explaining the references and period information while obliging the kids to sit through the entire films even though they can't see how anyone could possibly find any of this even remotely funny.

For dinner Desney took the leftover turkey and made us a delicious turkey pie. Dessert was leftover Christmas logs and chocolate. Sometimes leftovers can be better than a normally prepared meal.

Christmas Day

Another night on the couch. I got up real early, before 7, to get out of the living room before Alex gets up. But we still spent a wonderful Christmas morning of sitting 'round in pyjamas and dressing gowns and opening presents. The most fun is still watching the youngest, Alexandra, and her excitement.

The rest of the day is then spent cleaning up and playing with one's presents. I have to admit that this year I have been completely out of the Christmas spirit. I just haven't been able to think about the holidays this year. I therefore just couldn't come up with any ideas for presents for myself this year... except for the obvious... a new throat. I therefore didn't get anything to play with this year. I did get a ton of DVDs to watch. Now all I need is to be alloed to actually watch what I want to on the tele. It should take between now and the next century for me to get to watch all of these.

Snacks throughout the day and our classic endless game of Euro Monopoly. This year with six of us the dynamic was quite changed. Luckily I lost early and excused myself to nap while they continued on. From my understanding Alex won this year to her great pleasure.

Christmas Eve

Another better and worse night. It was better in that I didn't have any full cough attacks. However it was worse in that I coughed non-stop throughout the night. I would cough about every 10 minutes again and again. It started at about 1 in the morning. By 3 I pulled myself out of bed and went to sleep on the couch so Desney could get some sleep.

As always happens on this day Desney started with shopping and spent the rest of the day cooking in the kichen. Of course we all were blessed with roast turkey, her cranberry & port sauce, chestnut stuffing, peas & carrots and her gratin dauphinois. We started the meal with her home made foie gras. Everyone seemed to enjoy the Château le Fagé (Monbazillac). The food was plentiful and delicious. I was able to eat most. Everybody seemed to enjoy the 2000 Fleurie as well. Dessert was Christmas logs of all flavours.

Normally my job is to keep the kids occupied and out of the kitchen. As the grandparents were here I left that job to them. I worked on my accounting and bookkeeping responsibilities and slept.

Once the kids had gone to bed came my favouite part of putting the gifts under the tree. I still remember the wonderful and strange experience the first time of passing from the side of the eternally receiving child to that of the omnipotent and eternally giving parent...

The day before the day before

Desney spent a good deal of yesterday afternoon preparing foie gras. It's always a pleasure watching her meticulously pulling out the veins and blood bits and then making each liver into a beautiful roll with a lovely thick layer of yellow fat. I can't wait to see if I can taste it at all.

In the evening we had steak with foie gras sauce. The sauce was frozen but a delicious sneak preview of good things to come this season. I was able to eat well which made me feel quite satisfied. I even had some ice cream, for the first time in quite a while, which went down quite well.

The night was both better and worse. It was better in that I only got up once (02:00). But it was worse in that the attack I had at 2 was probably the worst I've had yet. The coughing was the most painful yet and I even very briefly contemplated throwing my body in to the car and going to the E.R. It just didn't seem like it would end. I sat up crying, coughing, drooling and with my nose running like a fountain. A beautiful sight. Thankfully it did subside and I slept until 07:30.

Today Desney was out and about doing lots oh shopping and preparing. She never stops. I spent part of the day trying to get food down. My throat hurt much more than usual. I then spent some time with bookkeeping and accounting.

As someone, with impeccable timing, is pulling the strings in my life I had my first tax audit which started before I even got out of hospital after my second surgery. My biggest worry was maintaining my clients' confidentiality and I was proud and pleased to do so even better than I thought. My accountant's main worry was covering her own ass which she did reasonably well. After many weeks of audit they found something to make their quota: many Internet transactions do not produce invoices. They are not a legal requirement for all transactions in America for example. I have to produce the invoices or those expenses will be excluded and added back on to my profit. For certain expenses, such as my web-hosting subcontractors, it's just a matter of time and tedious work of downloading and printing a few hundred invoice to cover 2000 through 2005. However for other companies, such as Internet fax services (JFax), domain names (Register.com) and digital certificates (Verisign), all I can do is write to themand beg. I received the results of my audit today with the figures of how much I stand to lose if I can't produce the goods. The problem is that France just doesn't accept that other countries don't do business in exactly the same fashion and they are, as usual, not willing to adapt. I really needed something else to worry about right now...

Tonight was our standard Friday night at home with a movie and take out. Only this time there were six of us. We called out from Pizza Hut and watched Pirates of the Carribean (first time for the Wilkinsons and the Nth time for the Erbs). Quite a bit of fun.

This entry is actually an experiment. I have written it entirely on my Palm TX and am going to publish it with the Palm as well.

[PS: It didn’t work. The entry was too long. I tried to publish it in bits, with copying and pasting and appending, but that didn’t work either. In the end I transferred the Word file I had created on my Palm to my network, with WiFile, and then uploaded it normally.]

The British are coming!

A phrase I remember oh so well. Paul Revere supposedly galloped up and down the streets one night shouting “The British are coming! The British are coming!”. I remember it because I was a big Paul Revere fan. My elementary school was named after him.

I use the phrase when my in-laws are coming to visit us. But it’s rather silly because the Brits are already here. Three out of four members of my family ARE British. Then again three out of four members of my family are American. Desney and I are the only mono-nationality members, Alexandra is dual-nationality (for the moment) and Jessica is triple-nationality.

The Wilkinsons arrived yesterday afternoon. Desney went to pick them up at the airport. They seemed very pleased to be here and their trip went well. They got the tour of the house and the kids then began their usual non-stop demands for attention. I left them to it and went to sleep in our bedroom.

The night before was the first night I slept in our bed, with Desney, in many weeks. Poor Desney. Although I only got out of bed once I spent most of the evening coughing and retching and I’m afraid neither of us got a lot of sleep. I am able to catch up with a nap in the afternoon but she isn’t. She never stops. I felt bad about it but I also felt quite helpless as I tend to feel during these moments. With most of my health situation I feel helpless. It’s like there’s someone else pulling the strings and every now and then he just jerks one and I suddenly cough up. After coughing I tend to hit something like the wall or a table. It’s a release from the pain but it’s also subconsciously probably what I’d like to do to whoever is pulling the strings.

I’m able to eat reasonably well. I had eggs and yogurt for breakfast and my now classic Rénutryl for lunch. But I’m still not gaining weight and even lose a few hundred grams every now and then. It brings back strange memories. Most people who know me as an adult would find it difficult to believe. But when I was a child, and especially an adolescent, I would try very hard to gain weight. I wasn’t weak. I had the right muscles in the right places. But I just wasn’t bulky. A very strange and awkward combination of broad shoulders, short arms and a basically squat form without the weight. It’s been a long time that I haven’t been in the mind frame of trying actively to gain weight. It’s quite fun actually. I can eat anything I want. I just wish food tasted better and it didn’t hurt so much to swallow.

We had fresh mussels for dinner along with chips. With Desney’s wonderful cream sauce they went down easily and I just kept eating… The rest of the family appeared to enjoy it as well and the André Ehrhart Gewurztraminer (Herrenweg) appeared to go down just as well as the mussels. The wine smelled wonderful and looked great in the glass.

I slept with my wife again, as it should be, and it was only a slightly better night. But it was better rather than worse.

Today everyone, except my father-in-law Bill, headed out to La Défense for the Christmas market and last minute Christmas shopping. They appear to have had a great time spending money which is such an important part of the Christmas spirit.

Dr. Kanoui... for the last time

Today was my final consultation with Dr. Kanoui and I actually hope it's the last time I have to see him.

Dr. Mammar had said, when we met with him on the 10th, that it was ridiculous to be seeing Dr. Kanoui only 10 days after the end of treatment and that my next visit should be at least a month later. There's nothing to see as he said.

I went out to the American Hospital where Dr. Kanoui apparently consults when he isn't at the Clinique Hartmann and when he wants to make more money. He examined my throat very quickly as I still have a really bad vomiting reflex which doesn't allow any one to shove anything in my throat without anesthesizing it first. He looked around my mouth and throat and then massaged my throat looking for tumours. He didn't find anything.

He then dictated a letter to the file and then another to Dr. Hagege who I should see in about a month. All of the followup will be done with Dr. Hagege, which I am pleased about, and I will organise.

Dr. Kanoui asked that Dr. Hagege keep him informed of my progress for his own personal pleasure. He filled out the necessary forms and charged me 100 euros and I was out the door.

A total and complete waste of my time and energy and just an excuse for Dr. Kanoui to get a little extra in before the holidays.

Ever so slightly... better

Today was not worse than yesterday and yesterday was not worse than the day before. The days are not the same either. They therefore must be… better. The difference is infinitesimal. But it’s positive…

Almost all of the mouth sores in my mouth and on my tongue are going away. That’s making it much easier for me to eat. I’m now able to eat at least one of my Rénutryl’s each day which should stop me losing any more weight.

I only awake 2 times a night now rather than 3. The first bout of sleep can sometimes last up to 4 hours. In between I still cough and I still cough up a ball of saliva eventually. But it’s better rather than worse.

The constant pain in the throat is pretty stationary. But breathing is easier. I still have no voice. Talking hurts and makes me cough. But I just avoid talking to the great pleasure of those around me.

The main improvement is that I can eat more and more and easier and easier now.

Now I just have to try and relax through the holidays…

Back from the ....

I feel like I’ve been in a coma for the past week or so. I actually probably would have preferred to have been. I really was hoping they were going to give me some wonderful drugs that would knock me out, or at least keep me pleasantly happy, throughout this period while I just wait for my body to retaliate and recuperate. Things have gotten worse each day. I can’t say things have gotten better yet. But I can say they’ve stopped getting worse which is already a major step forward. I’ve got to start getting better soon…

Time has passed…

Desney went out and got a new bed for her office/our guest room as my in-laws are arriving in a couple of days to spend Christmas with us. There’s no risk of my saying the wrong thing while they’re here as I can’t say much of anything at the moment. It should be their calmest trip ever.

I replaced the OfficeJet in her office with a new OfficeJet 7410 which is plugged directly on the network rather than to her computer. This means less work for her computer. But, more importantly, it means we now have a network printer on each floor. Every computer in the house can print to a printer on any of the floors. It also means we finally have a scanner and memory card reader on the network available to any of the computers. This means the girls’ computers can now scan and read memory cards from digital cameras.

Desney, Jessica and Alexandra went out and got the Christmas tree yesterday. For the first time in the history of our family I didn’t carry the tree home. Desney and Jessica carried it home from down the road which is a sight I certainly would have loved to have seen. I assume the entire neighbourhood heard the two of them “communicating” with each other. It took a while to get the tree stabilised as we had to cut a bit off the bottom. Desney was kind enough to spend the time putting the lights up as Alexandra could not possibly wait to get the decorations on. Once the lights were on we put on our classic Christmas music (Nat “King” Cole, carols, jazz Christmas, …) and put the decorations on the tree. It’s now proudly standing in the entrance of the home.

I sold off quite a few of my old versions of my tools (Palm T3, TomTom Go, Bluetooth handsfree car phone system, …) on eBay and finalised the transactions this week. That brought in a bit of extra cash for the holidays which is sorely needed. The old OfficeJet PSC, from Desney’s office, is next…

As all of my thoughts tend to be focused on getting through the day and getting food and medication in me I am having great difficulty getting in to the holiday spirit…

I’m just glad to be able to be here and celebrate the holidays at all…

Worse

They said "It'll get worse before it gets better". I hate it when they're right.

I also wish I could say that now it's getting better which is why I'm writing. Unfortunately I'm writing just so people stop thinking I'm either dead or back in the hospital!

Ever since the treatment stopped everything's gone downhill. The pain is constant. My throat hurts beyond belief when swallowing and now hurts every time I breathe through my mouth. The constant retching makes me cry all the time which makes my nose run all the time which blocks up my breathing even more. Added to all of this I now have a mouth full of mouth sores which is a cumulated reaction from the chemotherapy and radiation. The sores, on the outside edges of my tongue and on the inside of my cheek, make it so it stings horribly to put just about anything in my mouth (including my Rénutryl drink) and I can't open my mouth more than about 1/3. This is making it extremely difficult to eat. I'm eating less. Which means I'm losing weight again (a bit) and don't have a lot of energy to get up and do things.

Nights are endless, mornings are painful, evenings are dreaded... There's a good pocket in the middle of the afternoon...

I see Dr. Kanoui on 20/12 at which point I hope to be on the upswing. If I'm not I may get physically violent with him, with what's left of my energy, just out of pure frustration.

The kids are caring and a bit weary of me. But Desney, as always, is taking amazing care of me. They are the reason I am here and happy to be so.

I apologise for not writing more often at the moment and will try and do so when I can.

The day after the end of treatment

A slight improvement in the night in that I slept through until about 05:30 before the coughing fits started. I finally got up around 08:00 when i had just had a enough of sitting on the couch crying and coughing every 5 minutes.

I can remember not that long ago, maybe a few days ago, writing how it was the worst morning yet. Well, unfortunately, today topped any other before it. This was officially my worst morning since surgery. The pain, the coughing and retching, the crying, the pain and the shivers just would not stop. I just kept trying to get food down me, past the throat barrier and without throwing it back up, and get through the waves of pain. My throat is just absolutely on fire. It feels as though a hole has been burned in to the back of my mouth on the roof of my mouth and food now gets stuck up there on the way to the throat. The throat itself is just a pit of burning fire. The inside of my cheeks now have spots on them which make it very difficult for me to open my mouth more than halfway. My tongue has spots on both the left and right sides which make all food burn. Basically I am an absolute mess.

However I had a goal and an objective for today: No matter what I was going to show up at the End of the Year Market at Jessica's school. I felt that it was time that I saw everybody, even if it was only quickly, and to see how the market went.

When Alexandra got home from school, at about 12:30, I finished up in the kitchen, put some clothes on and off we went. It was a very strange feeling walking in to the school. I normally go every now and then and it's been a long time.

It was a strange, and almost surreal, experience seeing all the parents I know. Everybody was very polite and nice and everyone said I looked better than they thought I would. I can only fear whatever it is they thought I would look like. I put on a smiling and happy face and, although I couldn't really talk, I was able to say hello to just about everybody. There are some people out there, and they know who they are, who it was a real pleasure to see again. People who have made their support felt through kind messages, cards, offers of help and just positive thoughts. It was a very good and supportive feeling to actually see them in person. Hugs are always nice as well {g}.

I couldn't stay long as I got tired pretty quickly. I walked around with a tiny bottle of water to keep my mouth lubricated which worked pretty well. Finally I drove home with Desney and Alex, put myself to bed, and slept the rest of the afternoon.

Unfortunately waking up after my nap was almost as painful as waking up after a night's sleep. The pain and coughing fits were just this side of bearable and just seems to last forever.

Desney made a lovely dinner of pasta with chicken and mushroom cream sauce. I was actually able to taste it and it went down quite well. I couldn't actually eat a lot of it as it was quite painful. But worst of all I remember how well this went with one of our nice Chablis Premier Crus. There's just a wonderful combination of the mineral aspects of the Chablis with the earthy mushrooms and the buttery aspects of the Chablis and the cream sauce with that nice bit of acidity after that a Chablis can have biting nicely with the onion in the cream sauce. Although it tasted good it was slightly disappointing and more than slightly frustrating.

Jessica went off for her first night of babysitting. We couldn't ask for a better situation however as she was babysitting for a couple who literally live around the corner. Jess ate early and left amidst the screams of her parents, with as much as I could scream, to get her out of the house as she was late for her first night ever babysitting and more importantly her first night working for this couple.

Desney went to be relatively early (22:30) and I stayed up and didn't watch television. It was just basically on in the background. I was up when Jessica got home (00:30) and finally got to sleep around 01:00...

Day 54 – The final day of treatment

Is there any point in writing about the night again? It was rough, I didn’t sleep much and I coughed throughout. I woke up a bit late (08:30) as the kids were getting up by themselves today for Desney is staying home to do some proofreading.

I was very tired and greatly lacking energy throughout the morning. I wasn’t finished with breakfast and medication and stuff until well after 12:30. It took me 4 hours to get everything down with a lot of coughing and a lot of retching. Not a pretty sight or sound.

But there is the tiny light at the end of the tunnel that’s blinking at me today. I knew from the moment I woke up: today is the final day of treatment. I know perfectly well it’s not the end of pain and suffering. I know that it’s going to get worse for at least 2 weeks, with the cumulated build up of chemicals and radiation in my system, before it starts getting better. But making it through today means that I have made it through the entire 8 weeks of radiation therapy without any breaks which means, to me, that I have done everything I can to kill this thing and get it out of my body. No more treatment will also mean that I can start controlling what I do when during the day and no longer have to organise my day around the clinic appointments. I am very much looking forward to the end of today…

Desney and I got to the clinic a few minutes early. They took me in right on time. I was in and out in about 15 minutes and then we had to wait to see the doctor. We waited a good half an hour and were escorted in to his office. We were both very pleased to see Dr. Mammar and he was quite pleased to see us. He said it feels like yesterday that we first met, which was the day before my treatment started (16/10), and that time had flew by. I told him that I understood but that it hadn’t exactly flown by for me. On the contrary it was quite long. We talked a bit about the treatment itself, how intense it was, how they used the maximum possible amounts of radiation and of chemo and how everything had (in principle) been removed by surgery beforehand and the radiation was for preventive measures. We talked a bit about the long-term. How long it will take before things get better. They never have an answer for that one. Each case is different and they don’t want to be pinned down to a claim they can’t stand behind later. It could be 2 months like it could be a year and a half! We talked about what changes would be permanent: much less saliva for the rest of my life which means I’ll always need a bottle of water with me; whiskers will no longer grow where I’ve been radiated so I can only grow a moustache and a goatee; a part of my neck, just under the chin, needs constant massage or I’ll look like a pelican; I’ll need to take fluoride treatments every day, for about a minute, for the rest of my life as they’ll never be able to work on the bones in my jaws and mouth and with less saliva there is always a higher risk of dental infection. As always he was a pleasure to talk to and very responsive to our questions. The most important point he wanted to get across was that normally this would be it. He can’t guarantee anything, and certainly doesn’t want to, but with the extent of treatment I went through and the extent of the surgery prior to the treatment there should not be anything left and nothing should come back. There is always a risk of remission. But that’s not what one should be thinking about as there’s nothing more one can do. One should be thinking about the present and the future without cancer. We talked about the follow up examinations and surveillance and went over what I had to do with which doctors and when. He gave me whatever last prescriptions I needed and we said goodbye. I thanked him profusely for everything.

When I got home I put myself to sleep. I fell asleep with the very satisfying feeling of having accomplished something. I didn’t falter. I went through the entire 8 weeks, and all of the treatment, without any breaks and without quitting. I’m still hurting for it but I am pleased and happy with myself for having gotten through this part. It’s a milestone. It’s not the last. But it’s an important one for me.

In the evening we had Chinese takeaway and watched a quick movie (Le Papillon) as Alexandra has school in the morning.

Day 53 – The day before the end

Last night was one of the worst nights in a while. In addition to my standard coughing fits (02:30, 04:30 and 06:05) I would have little coughs every 30 to 45 minutes throughout the night. This was absolutely exhausting as I only got bursts of sleep and never a full hour of sleep without interruption.

I woke up feeling particularly bad this morning. A bout of the shivers, my bones ached, I had no energy and I actually had a pain in the muscle in my buttocks where I normally sit down.

It took me a long time to get breakfast down (oatmeal) and then my medication. I kept walking around the kitchen and the house like a really old man and making sort of wheezing and whining sounds out of my throat. I’m glad I was alone! About an hour or so after I got the painkillers (Efferalgan/Codeine) down I started to feel a bit stronger and was able to at least look at my e-mail.

For lunch I decided to get away from the same ole same ole. I thought about one of the beautiful tins of Cassoulet I picked up at the Salon du Vin… but I decided I’d wait until I could actually taste them. Therefore rather than another Turkish sandwich or a sandwich from the bakery…

I strolled down to Gennevilliers, about a 15 minute walk, and went to McDonald’s. What better way to fatten me up than to eat American? I also thought it would do my transit well, which has been blocked up a bit by all the medication, in that there’s nothing that goes though and out me faster than McDonald’s! As there’s so much salt and chemicals in the “food” I was actually able to taste everything and it wasn’t half bad. One mistake I will not make again however is the fizzy soda. I had a Coke with my meal and the sugary bubbles were like sandpaper going down my throat.

Back home to catch the end of Ballykissangel and off to the clinic.

I got to the clinic on time. Unfortunately they were having problems again. My radiation machine was not working properly. They were unable to be 100% certain as to what dosage it was giving. That was good enough for me to avoid it. A half hour later they called my name, took me to a side, explained the situation and asked if I could come back on Monday. I explained that tomorrow was my last day of my entire treatment and that I would not want to come back on Monday. I told them I was prepared to wait if necessary but I would do anything not to come back on Monday. They said they would see if they could squeeze me in to the other machine. An hour later they came back out and announced that the machine had been fixed. They called my name as the first patient. I took them to a side this time and verified that every aspect of the machine was working and they were able to control the doses. They asked if I wanted to see a doctor. I asked if a doctor had verified the system. They said that Dr. Mammar had just verified the system which is why they were now operating again. That was good enough for me. I didn’t get out of there until 17:45 but at least I don’t have to extend my treatment.

I got home and put myself to bed until dinner. Desney did chicken legs and spinach. The chicken was delicious, filling and I was able to eat everything.

Day 52 – Wednesday…

Another rough night. I feel like I sleep better on the couch, as I can raise my torso a bit, but I’m still having rough nights. Three fits last night: 02:30, 04:30 and 06:30. After a few minutes of coughing my throat literally feels like it’s been burned from the inside and I just sit there crying in the dark trying desperately to rip my throat out my body and throw it out the window.

My appointment was late today (17:30) so I had all sorts of time. I admit I took my time getting through the day. I did everything rather slowly and had lunch in front of Ballykissangel on the tele again.

I left at about 16:45 for the clinic. As it was later in the day they were running later as well. I didn’t go in for treatment until about 17:45. They only zapped my left side today and explained that they’re done with my right side. Any news of less treatment is good news.

I got home pretty exhausted and in time for dinner. I’m sorry I can’t remember what it was but I know I ate all of it. I also had a Rénutryl to make me feel like I’m a good boy and doing what I was told. I have to admit it’s very strange for me to be actually thinking of things to help me gain weight rather than the other way around. That said I never spent a lot of energy on losing weight either…

The end of the day these days is becoming as bad as the mornings. I generally get uncontrollable coughing fits which are very painful. I just sit there trying not to cough up a disgusting ball of saliva and not make too much noise. Again I just sit there crying and waiting for it to finish…

Another day done… only 2 more days of treatment to go!

Day 51 - Back to the clinic

The night was as usual (fits at 02:30, 04:30 and 06:30) and I got up after everyone had left in the morning.

My morning was spent as usual just getting through the routine (breakfast, medecine and toileteries).

I got a sandwich from the local bakery, which I was able to eat, and I watched Ballykissangel while having lunch.

Then it was back to the clinic for my treatment. They were reasonably on time and the treatment went well. Afterwards however they informed me that they had changed the times of my other appointments for the week. Tomorrow's appointment is now 17:30 which puts me in traffic... but I'm not exactly in a rush to go anywhere...

I got home from the clinic and the burning sensations started. My mouth was completely dry and the back of my throat literally felt like it had been blowtorched. I put myself to bed and to sleep until everyone got home.

Dinner was fish and veg. I ate the veg but the mushy fish went down too bland and like chalk. I therefore drank one of my Rénutryl so that I felt like I had a meal.

This evening I decided to sleep on the couch. This way Desney can get our bed and a good night sleep. Tomorrow's Wednesday so I can sleep in a bit and I will not be in anyone's way in the living room.

One last long coughing fit and off to bed...

Day 50 - Monday at home

Day 50: I was never supposed to write that. For the longest time I had counted on 7 weeks of treatment and Day 49 was supposed to be my last day. But life is just full of so many surprises.

As the electricity was still out, for our area of Asnières, when I went to bed I brought my Palm TX with me to use as a clock. I was able to sleep until 04:30. But the coughing fit at that time was one of the worse: it lasted at least 10 minutes. I was quite sore afterwards and it took me a while to get back to sleep. Another fit at 06:30 had my wishing I could just throw my throat out the window. I finally got up a little after 08:00. The electricity didn't come back on until after 07:00 in the morning!

As usual I spent the morning with my daily chores (breakfast, medicine and toileteries). I read a bit but had difficulty concentrating and found myself reading the same page several times... very frustrating. Finally I ran out and got myself a Greek sandwich (donner kebab) and settled down to watch Ballykissangel.

I was going to get up and do things after Ballykissangel. I had everything planned in my mind: e-mail and bookkeeping. I never made it out of the couch. The fatigue just caught up with me and, though no choice of my own, my body decided it was time to sleep. I didn't get up again until after everyone got home (after 18:00).

Dinner was enjoyable: minestrone soup with ciabatta bread and some Aoste ham. I was able to eat everything and quite enjoyed. Everything tasted bland but not bad.

I sat around reading on my Palm TX (WiFi news through AvantGo and AddIt and a new book "Da Vinci Rising" by Jack Dann) most of the evening. As Jessica is trying to finish "Le Barbier de Seville" the TV was actually off. It was great!

Got my evening medication down and off to bed a bit after midnight...

Targeted

I’ve wanted to write this down for quite some time…

Why Me? The question is so stereotypical for a victim that it almost becomes rhetorical. As a cancer victim I have obviously asked myself the question over and over again without even expecting a response. But I am still curious. Why do such bad things happen to good people? How many times do we read about some psychopathic child-molesting serial killer dying a slowly painful death of cancer?

I was watching a documentary the other night on last year’s Boxing Day Tsunami which included discussions with survivors. Survivors are pretty stereotypical just like victims. Be it the Holocaust, September 11th or the Tsunami the survivors question is “Why not me?” or “Why did I survive and these others die?”. They too will never have an answer and tend to live with a lot of guilt in the mean time. I personally have always thought of myself as a survivor and have survived quite a lot of ups and downs in my life. I have never (yet?) felt guilty about surviving… I’ve always felt happy to be alive and generally a bit proud and pleased with myself.

Lately I feel that not only did I do something seriously wrong (bad karma, bad vibes or just bad attitude) that I am being paid back for but that some entity has literally made choices about this disease specifically for me. It can’t be entirely coincidence that out of all the fatal diseases out there, and unfortunately we do not lack choices, this particular blend of cancer affects all of the specific aspects of life which are dear to me.

I am a very sensual person. I was raised with an emphasis on the 6 senses (yes… 6). The basic 5 (taste, smell, touch, hearing and sight) have all been the most important aspects of my life. By this I mean that the senses have been more important to me than the intellect. In my personal life taste has become probably the most enjoyable and pleasurable. One of the major reasons I chose to live where I live is that we eat for pleasure not purely for biological needs. I love the various tastes of foods and wines. That is where my artistic sides lie. It can not be entirely coincidental that the direct effect of this particular flavour of this disease affects specifically my favourites: ALL wine tastes awful, cheese tastes like chalk, patés sting, fresh bread hurts to chew and the list goes on. All of the foods and tastes I love in life have been taken away from me. I don’t even know for certain that my taste buds will ever come back to the level I had raised them to.

And now I can’t speak. Now anyone who knows me, even those who only know me by reputation, knows that I love to talk and always have. I worked on my voice, my pronunciation and my accent throughout most of my childhood. I’ve always been both proud of and pleased with my voice. However I also have just always enjoyed the simple pleasure of conversation. Now conversation is actually painful. It’s not that my voice is weak and faint, which it is, but rather that is actually physically painful to try and speak. I can only hope that my voice will one day come back to where it was before all this started.

It still seems to me as though all of the specific effects of this illness have been directed at my specific pleasures in life. My question therefore no longer is “Why Me?” but rather “What did I do? … and to who?” If someone would let me know I would apologise, I would repent and I would do whatever it took to rectify the situation. I would feel so much more active rather than submitting to the disease and “getting through it”. I’ve screwed up before in my life, more times than I’d like to admit, and I thought I’ve always patched up whatever I messed up and sometimes even improved the situation in the end. But obviously I’ve missed out on something.

Paranoid? Me? Who said that???

Day 49 - A relaxing Sunday

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.

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.

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…

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.

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.

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...

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).

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.

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.

• 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...

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.

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!

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.

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.

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...

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...

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.

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.

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.

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…

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!

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…

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.

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]

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]

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]