I spent most of the day either asleep or doing accounting...
I eagerly awaited our classic Friday evening of sitting together and watching a movie with takeout of some sort. Desney picked up Chinese and put all of mine through the mixer. Spicy shrimp and rice through the mixer - Duck, veg and rice through the mixer. I was able to eat everything but it just didn't feel the same.
We sat around watching yet another classic from the 80s (Ferris Bueller's Day Off) which Jessica couldn't sit through as usual. She just can't figure out what anyone would have liked in these movies. I find it quite interesting to watch her reactions having always loved old movies myself. Alexandra actually quite liked this one.
Anything that makes me laugh is good for me!
Friday, September 30, 2005
Thursday, September 29, 2005
I was a bad boy
I had what should be my last appointment with my surgeon (Dr. Hagege) for a while. One of the first things I told him was how happy I was to be eating normally again. He immediately reprimanded me. I shouldn’t be eating solids yet as the stitches inside my throat are not finished healing and could re-open. Apparently the next 4 or 5 days are critical as regards those stitches and if I eat solids and they re-open I have to go back in to surgery to have them restitched. All of us would obviously like to avoid that. In addition he’s going away for the weekend so he doesn’t want me taking any risks. This brought on a nice wave of depression as I realised I was going to be going through another 4 or 5 days of eating like a baby when I had just gotten used to the simple pleasures of eating “normal” food. I have to eat mush until Tuesday.
He talked to me about my scar and told me how I now have to massage it twice a day to break up the scar tissue underneath. He obviously couldn’t know how much I hate oils and creams and such. I’ll start massaging them this evening with almond oil. It doesn’t tickle but it’s not screamingly painful either.
We them spoke about preparations for the x-ray therapy. I have to have a full panoramic dental x-ray done to ensure that my teeth and my jaw are healthy as the x-rays are shot at a range from above the jaw line to below the thorax. My teeth and jaw will therefore be weakened and we can not risk infection. An x-ray is no big deal so this didn’t bother me.
However I also have to go through another scan with injection. Immediate memories of lying there shivering with fear during the last scan cam flashing back to me. This time they’ll be scanning lower, from the thorax to the lower intestine, to ensure that the cancer has not spread to any other areas before starting the x-ray therapy. Hopefully I’ll be able to do this at the same place, and around the same time, as my meeting with the oncologist (Clinique Hartmann).
I told him about my problems with my puffed up left ear and left jaw. He explained that this was perfectly normal and that the double-surgery has created double-trauma throughout the left part of my body which will take months to recuperate.
When I left he said we would see each other after the x-ray therapy treatment unless there were problems during the treatment.
I walked back up the street to place de Champerret feeling pretty depressed about the near future…
I went to Monoprix and bought myself all the sort of mush I can eat over the next few days (yogurts, apple/pear purées, patés, soups, …). I came home and Desney ran my dinner (fried chicken and corn on the cob) through the mixer. It certainly ain’t the same.
He talked to me about my scar and told me how I now have to massage it twice a day to break up the scar tissue underneath. He obviously couldn’t know how much I hate oils and creams and such. I’ll start massaging them this evening with almond oil. It doesn’t tickle but it’s not screamingly painful either.
We them spoke about preparations for the x-ray therapy. I have to have a full panoramic dental x-ray done to ensure that my teeth and my jaw are healthy as the x-rays are shot at a range from above the jaw line to below the thorax. My teeth and jaw will therefore be weakened and we can not risk infection. An x-ray is no big deal so this didn’t bother me.
However I also have to go through another scan with injection. Immediate memories of lying there shivering with fear during the last scan cam flashing back to me. This time they’ll be scanning lower, from the thorax to the lower intestine, to ensure that the cancer has not spread to any other areas before starting the x-ray therapy. Hopefully I’ll be able to do this at the same place, and around the same time, as my meeting with the oncologist (Clinique Hartmann).
I told him about my problems with my puffed up left ear and left jaw. He explained that this was perfectly normal and that the double-surgery has created double-trauma throughout the left part of my body which will take months to recuperate.
When I left he said we would see each other after the x-ray therapy treatment unless there were problems during the treatment.
I walked back up the street to place de Champerret feeling pretty depressed about the near future…
I went to Monoprix and bought myself all the sort of mush I can eat over the next few days (yogurts, apple/pear purées, patés, soups, …). I came home and Desney ran my dinner (fried chicken and corn on the cob) through the mixer. It certainly ain’t the same.
Monday, September 26, 2005
Food glorious food
Desney prepared my dinner as usual. She put the meat through the blender along with some potato purée and a bit of onions and such. The taste is the same but the texture rather like baby food. I am starting to understand how boxers and guys who get their jaws broken must feel. I can't possibly imagine going through all of this on purpose.
However my swallowing has been getting much better lately and so I got a bit adventurous. I tried eating salad and was able to slice everything small enough with my knife and fork to eat all of my salad without any difficulty... even cucumber. It was a wonderful feeling.
I then went for a hard-boiled egg. A bit of mayonaise and a lot of chewing and another step towards solids was made. I even took a bit of meat and tried but it's obviously I still can't quite get a thick piece of steak down as by the time I finish chewing one morsel everyone else is already having dessert.
I was able to eat just about everything and felt just wonderful. A fully satisfying meal with both flavour and textures. Yet another of the great simple pleasures of life.
However my swallowing has been getting much better lately and so I got a bit adventurous. I tried eating salad and was able to slice everything small enough with my knife and fork to eat all of my salad without any difficulty... even cucumber. It was a wonderful feeling.
I then went for a hard-boiled egg. A bit of mayonaise and a lot of chewing and another step towards solids was made. I even took a bit of meat and tried but it's obviously I still can't quite get a thick piece of steak down as by the time I finish chewing one morsel everyone else is already having dessert.
I was able to eat just about everything and felt just wonderful. A fully satisfying meal with both flavour and textures. Yet another of the great simple pleasures of life.
Scarface v2.0
As you can see I have a new and improved version of the scar. It's now a big letter Y which runs up around my neck behind my ear and down across my shoulder. I'm sure it'll impress kids in the streets. At the moment I'm sure it scares people off more than anything.Desney and Jessica are pretty blasé about it. But Alexandra really doesn't like it and wishes I would cover it up or that she didn't have to look at me.
Taking off the bandages in the morning was not a big deal. But throughout the day as the wound was exposed to the air it tightened and pulled something chronic. It feels as though there's this sort of hole in the middle, where the wounds meet, which is pulling my skin towards it (down from the face, up from the chest, left from the shoulder and right from the neck). I now realise that it wasn't the bandages which were constricting my movement but rather the wounds themselves.
This evening was a wonderful experience. My first shower since the operation. It felt absolutely wonderful to get clean again... especially my hair. I obviously didn't scrub the scar but rather gently washed it with some Cytéal. It was great to actually wash my face though.
Afterwards was a slightly scary experience: shaving. As I hadn't shaved for so long it would have been difficult under any circumstances as the whiskers kept getting stuck in between the razors. In the end I managed to shave properly and simply left a small hairy patch where I didn't want to actually shave the wound. It looks quite strange actually but it's much less itchy.
All of this is probably much more information than anyone else was interested in...
Stop hiding...
After breakfast, and after everyone had left the house, I took the bandages off this morning. It was a relatively painless process and more emotionally impressive than anything else.
I have a very tough looking sloppy letter Y on my neck running from behind my ear down towards the middle of the neck and from the middle of the scar down towards my left shoulder. I obviously hope this will get smaller and paler with time as the moment it's pretty scary looking.
Being able to finally see the wounds helps me better understand how I feel as well. I now know why I can't turn my head in particular directions. I thought it was from the bandages but it's actually from the wounds themselves. It'll be a while before I can stretch a bit...
I have to leave the wounds out in the open, to the air as it where, for the day before I can get them wet. I can't wait for tonight when I can shower and shave (very, very, very carefully).
I have a very tough looking sloppy letter Y on my neck running from behind my ear down towards the middle of the neck and from the middle of the scar down towards my left shoulder. I obviously hope this will get smaller and paler with time as the moment it's pretty scary looking.
Being able to finally see the wounds helps me better understand how I feel as well. I now know why I can't turn my head in particular directions. I thought it was from the bandages but it's actually from the wounds themselves. It'll be a while before I can stretch a bit...
I have to leave the wounds out in the open, to the air as it where, for the day before I can get them wet. I can't wait for tonight when I can shower and shave (very, very, very carefully).
Friday, September 23, 2005
The results are in...
Went back to the surgeon today.
He took my stitches out which was another less than enjoyable procedure. He put another bandage back on over the wound which I have to wear until Monday. Finally on Monday morning I can take the bandages off, leave the wound open to the air all day and finally have a proper wash on Monday night. I can't wait!
After working on the wound and the stitches we sat down to speak. He had received the results of the biopsy on what they had removed from within me. It was the, now classic, case of good news - bad news - good news, whatever.
The most important aspect is that they are 99% sure that they found and removed the primary tumour. This would be the rather large (3 cm x 2 cm) tumour in my left tonsil. The entire tonsil was destroyed by the tumour. However it looks as though the bit they removed had healthy tissue around it which shows that they removed the entire cancerous area.
He gave me the results so I asked him questions about what I read, from what I could understand, and learned a bit more about just how deeply they had probed in to me. The deepest tumour they had removed was one, about 2 cm in size, that they had extracted from behind my jugular. In the area that they re-opened and explored wider they removed an additional ELEVEN tumours ranging in size from 0.5 to 1.5 cm. Two of those were cancerous. They also worked their way around the back of my neck and removed another FIVE tumours, ranging in size from 0.2 to 2 cm, two of which were cancerous. It was obviously a good thing that they were so thorough.
The basic summary is that they removed over 17 tumours and that 5 of them were cancerous.
The good news again is that he believes they have removed all of the tumours which will need to be removed via surgery. I just have to get healthy again and prepare myself for x-ray therapy (radiation therapy).
He gave me the introduction letter to start my consultation and preparation at the Clinique Hartmann in Neuilly-sur-Seine which is close to his office and relatively easy for me to get to. I will be calling them on Monday. He said that it would be a good 2 weeks before I started radiation therapy as the wound has to be completely healed before they start blasting x-rays through it.
He still does not fully understand where the cancer came from. I haven't smoked for over 15 years. I have one night of smoking per year (Super Bowl Sunday) and maybe a cigarette or two in the year when I drink a bit. I am not a heavy drinker. Although by American standards I am probably a wine drunkard by French standards I am quite a weak drinker. Being male and over 40 apparently are risk aspects but nothing much I can do about that. I'll never know if my dad would have gotten cancer as he died when both of us were so young. A lot of his family died of cancer. But then again they were all, and without exception, very heavy smokers as well.
I asked about the risk for my kids and he said it was absolutely minimal. I then asked if we were hopeful to truly remove the cancer to a stage where it would not come back. He said we wouldn't be bothering to put you, and us, through all of these invasive procedures if that wasn't precisely our goal. A bit obvious but good to hear all the same.
He took my stitches out which was another less than enjoyable procedure. He put another bandage back on over the wound which I have to wear until Monday. Finally on Monday morning I can take the bandages off, leave the wound open to the air all day and finally have a proper wash on Monday night. I can't wait!
After working on the wound and the stitches we sat down to speak. He had received the results of the biopsy on what they had removed from within me. It was the, now classic, case of good news - bad news - good news, whatever.
The most important aspect is that they are 99% sure that they found and removed the primary tumour. This would be the rather large (3 cm x 2 cm) tumour in my left tonsil. The entire tonsil was destroyed by the tumour. However it looks as though the bit they removed had healthy tissue around it which shows that they removed the entire cancerous area.
He gave me the results so I asked him questions about what I read, from what I could understand, and learned a bit more about just how deeply they had probed in to me. The deepest tumour they had removed was one, about 2 cm in size, that they had extracted from behind my jugular. In the area that they re-opened and explored wider they removed an additional ELEVEN tumours ranging in size from 0.5 to 1.5 cm. Two of those were cancerous. They also worked their way around the back of my neck and removed another FIVE tumours, ranging in size from 0.2 to 2 cm, two of which were cancerous. It was obviously a good thing that they were so thorough.
The basic summary is that they removed over 17 tumours and that 5 of them were cancerous.
The good news again is that he believes they have removed all of the tumours which will need to be removed via surgery. I just have to get healthy again and prepare myself for x-ray therapy (radiation therapy).
He gave me the introduction letter to start my consultation and preparation at the Clinique Hartmann in Neuilly-sur-Seine which is close to his office and relatively easy for me to get to. I will be calling them on Monday. He said that it would be a good 2 weeks before I started radiation therapy as the wound has to be completely healed before they start blasting x-rays through it.
He still does not fully understand where the cancer came from. I haven't smoked for over 15 years. I have one night of smoking per year (Super Bowl Sunday) and maybe a cigarette or two in the year when I drink a bit. I am not a heavy drinker. Although by American standards I am probably a wine drunkard by French standards I am quite a weak drinker. Being male and over 40 apparently are risk aspects but nothing much I can do about that. I'll never know if my dad would have gotten cancer as he died when both of us were so young. A lot of his family died of cancer. But then again they were all, and without exception, very heavy smokers as well.
I asked about the risk for my kids and he said it was absolutely minimal. I then asked if we were hopeful to truly remove the cancer to a stage where it would not come back. He said we wouldn't be bothering to put you, and us, through all of these invasive procedures if that wasn't precisely our goal. A bit obvious but good to hear all the same.
Mornings are still hell...
I still hate mornings... always did and always will...
Some mornings are better than others nowadays. It depends on how I sleep. If I stay on my back my throat dries out less and I can get it relubricated quickly enough to be functional within an hour or so. But if I lie on my side when I sleep then mornings can be very long.
I get up around 06:00, as the pain starts to kick in, and I take that first swallow which I dream of avoiding. Desney came up with the wonderful idea of keeping thermoses of ice water for me throughout the day. I knock back ice water all day and it soothes the throat a bit. So I came up with the idea of keeping a tiny thermos of ice water next to the bed and I am amble to start on that first thing in the morning. I basically sit up in bed sucking back ice water, very slowly, for about a half an hour contemplating why I have to go through this.
I then eat what I can which generally consists of yogurt, apple purée and petits suisses. Finally I start the morning medication of anti-inflammatories, antibiotics and the painkillers. Depending on how the morning has gone up to then I generally pass out for anywhere from 30 to 90 minutes. But if I sleep too long then I go through the same painful rehydrating process all over again.
God how I hate mornings...
Some mornings are better than others nowadays. It depends on how I sleep. If I stay on my back my throat dries out less and I can get it relubricated quickly enough to be functional within an hour or so. But if I lie on my side when I sleep then mornings can be very long.
I get up around 06:00, as the pain starts to kick in, and I take that first swallow which I dream of avoiding. Desney came up with the wonderful idea of keeping thermoses of ice water for me throughout the day. I knock back ice water all day and it soothes the throat a bit. So I came up with the idea of keeping a tiny thermos of ice water next to the bed and I am amble to start on that first thing in the morning. I basically sit up in bed sucking back ice water, very slowly, for about a half an hour contemplating why I have to go through this.
I then eat what I can which generally consists of yogurt, apple purée and petits suisses. Finally I start the morning medication of anti-inflammatories, antibiotics and the painkillers. Depending on how the morning has gone up to then I generally pass out for anywhere from 30 to 90 minutes. But if I sleep too long then I go through the same painful rehydrating process all over again.
God how I hate mornings...
Thursday, September 22, 2005
Money, money, money...
I was able to do a bit of work today on the computer...
I spent most of my time going through e-mails and the work that my assistant in London is doing.
However I was also able to prepare invoices for the work I had done before I got sick and send those off. They are probably going to be some of the last invoices going out for a while.
If I was an employee this would actually be a relatively easy situation. I would just sit at home, be sick, get better, go through the treatment, have positive thoughts and get on with the rest of my life. As an employee here in France I would be completely covered financially and my salary would continue to just magically arrive in my bank account at the end of each month.
As I am not an employee when I do not work I do not get paid. I can't exactly bill clients for time I spend lying on the couch trying to swallow. September, with all of the hospitalisation and treatment, is basically a write-off. However I am hoping that I will be able to work a few hours a day throughout the radiation treatment so as to be able to bill something throughout. The house and car payments still have to be made and the social charges, from which I am certainly benefeting right now, have to be maintained. I'll know more about what my possibilities are once I meet an oncologist prior to starting the radiation therapy. Desney and I have already talked a bit about what our possibilities are or more appropriately are not. However until we know what my limitations are going to be it's not worth worrying over at the moment.
I admit I am worrying about one thing at a time at the moment and living hour-by-hour. It's amazing how much of my life is spent worrying about other people's problems and finding solutions. This is one of the first times in my life that I'm worrying about me and my problems and it takes a bit of getting used to.
My only priorities at the moment: Get over the surgery - Build up my strength again - Get through the radiation therapy - Positive Thoughts Throughout
I spent most of my time going through e-mails and the work that my assistant in London is doing.
However I was also able to prepare invoices for the work I had done before I got sick and send those off. They are probably going to be some of the last invoices going out for a while.
If I was an employee this would actually be a relatively easy situation. I would just sit at home, be sick, get better, go through the treatment, have positive thoughts and get on with the rest of my life. As an employee here in France I would be completely covered financially and my salary would continue to just magically arrive in my bank account at the end of each month.
As I am not an employee when I do not work I do not get paid. I can't exactly bill clients for time I spend lying on the couch trying to swallow. September, with all of the hospitalisation and treatment, is basically a write-off. However I am hoping that I will be able to work a few hours a day throughout the radiation treatment so as to be able to bill something throughout. The house and car payments still have to be made and the social charges, from which I am certainly benefeting right now, have to be maintained. I'll know more about what my possibilities are once I meet an oncologist prior to starting the radiation therapy. Desney and I have already talked a bit about what our possibilities are or more appropriately are not. However until we know what my limitations are going to be it's not worth worrying over at the moment.
I admit I am worrying about one thing at a time at the moment and living hour-by-hour. It's amazing how much of my life is spent worrying about other people's problems and finding solutions. This is one of the first times in my life that I'm worrying about me and my problems and it takes a bit of getting used to.
My only priorities at the moment: Get over the surgery - Build up my strength again - Get through the radiation therapy - Positive Thoughts Throughout
Wednesday, September 21, 2005
Back to the doctor...
I went back to see the surgeon today. It was actually quite good to get out of the house.
I must have done a bit much yesterday as I was definitely very tired today. The trip on the bus back and forth to the surgeon's was actually quite exhausting.
The surgeon was running quite late, as were most of the doctors in his office, and the waiting room was full of people asleep in the couches and chairs. I joined them without complaint.
When he finally saw me he removed my bandages. He likes the look of my scar. That's the sort of thing only a surgeon can say. The swelling has gone down nicely and everything looks fine to him. He changed my bandages and gave me a much bigger bandage. Just what I needed. He explained that on Friday he will remove the stitches but he will be putting another bandage on top of the wound until Monday. So I still can't take a shower or clean myself properly until Monday. That was a step backwards in my opinion.
The good news is he said I can eat just about anything as long as it's mushed up and not warmer than tepid. When I got home I mushed up a half an avocado and ate with glee. After a week of a diet of exclusively yogurt, purées of apples and/or pears and petits suisse it was wonderful to eat something else. It felt quite revitalising to finally be able to eat some vegetables.
In the evening I actually got to eat dinner with the family. Desney prepared me all sorts of tepid purées in separate bowls (potato with cheese and milk - peas and milk - and she ran a steack haché through the blender and I mixed it in with the potato purée). It was wonderful!
I am now dreaming of the day I actually need to use a fork and knife again.
It's amazing how much of our basic needs and basic pleasures we take for granted!
I must have done a bit much yesterday as I was definitely very tired today. The trip on the bus back and forth to the surgeon's was actually quite exhausting.
The surgeon was running quite late, as were most of the doctors in his office, and the waiting room was full of people asleep in the couches and chairs. I joined them without complaint.
When he finally saw me he removed my bandages. He likes the look of my scar. That's the sort of thing only a surgeon can say. The swelling has gone down nicely and everything looks fine to him. He changed my bandages and gave me a much bigger bandage. Just what I needed. He explained that on Friday he will remove the stitches but he will be putting another bandage on top of the wound until Monday. So I still can't take a shower or clean myself properly until Monday. That was a step backwards in my opinion.
The good news is he said I can eat just about anything as long as it's mushed up and not warmer than tepid. When I got home I mushed up a half an avocado and ate with glee. After a week of a diet of exclusively yogurt, purées of apples and/or pears and petits suisse it was wonderful to eat something else. It felt quite revitalising to finally be able to eat some vegetables.
In the evening I actually got to eat dinner with the family. Desney prepared me all sorts of tepid purées in separate bowls (potato with cheese and milk - peas and milk - and she ran a steack haché through the blender and I mixed it in with the potato purée). It was wonderful!
I am now dreaming of the day I actually need to use a fork and knife again.
It's amazing how much of our basic needs and basic pleasures we take for granted!
Mornings are getting better...
I hate mornings. I always have and probably always will. A good early morning for me is at the end of a long night when I go to sleep.
I hate getting up in general. I do so only because I have to.
However mornings since the operation have been hell. Our throats dry out when we sleep. In my case that means all of my internal stitches contract and so when I wake up and take that first swallow of the morning it's like an entire gang has decided to attack the inside of my throat with razor blades. The pain lasts throughout most of the morning and obviously doesn't make it easy for me to eat or communicate.
Today however I was able to better prepare. I had cold water ready for me next to the bed. Although nothing can prevent that first dry swallow and the ensuing pain getting ice water down my throat immediately afterwards allows me to at least start functioning. I was able to crawl out of bed and slowly get a yogurt down me before taking the rest of my medicine. This also greatly reduced the nausea I go through most mornings.
The morning was tough and the morning was long... as always. But it was definitely bearable. I was able to get down yogurt, apple purée and a couple of petits suisses.
Mornings are getting better. Today was first morning since the operation I did not cry.
I hate getting up in general. I do so only because I have to.
However mornings since the operation have been hell. Our throats dry out when we sleep. In my case that means all of my internal stitches contract and so when I wake up and take that first swallow of the morning it's like an entire gang has decided to attack the inside of my throat with razor blades. The pain lasts throughout most of the morning and obviously doesn't make it easy for me to eat or communicate.
Today however I was able to better prepare. I had cold water ready for me next to the bed. Although nothing can prevent that first dry swallow and the ensuing pain getting ice water down my throat immediately afterwards allows me to at least start functioning. I was able to crawl out of bed and slowly get a yogurt down me before taking the rest of my medicine. This also greatly reduced the nausea I go through most mornings.
The morning was tough and the morning was long... as always. But it was definitely bearable. I was able to get down yogurt, apple purée and a couple of petits suisses.
Mornings are getting better. Today was first morning since the operation I did not cry.
Tuesday, September 20, 2005
Home Sweet Home
This will be a quick entry and I will try and fill in more later.
I got home from the hospital yesterday. A lot of surgery on Thursday and a lot of resting and medication since.
I still can't eat solids so I am very weak and have my ups and downs both physically and emotionally. Thank God for pain killers as they are probably what is keeping me going at the moment.
It's amazing how we take all of the most simplest things in life for granted. Do you have any idea how many times a day you swallow? I certainly never thought about it before. But with the combination of the swelling from the tumour surgery constricting my throat and the fact that they took my tonsils out as well every single swallow is a rather masochistic experience I would gladly live without. Biology was never one of my big subjects so I'm definitely off on the figures. But we must swallow thousands if not tens of thousands of times a day!
I'm eating yoghurt, petits suisses, apple and pear purées, more yoghurt and ice cream. After almost a week of this diet I've lost 2 and a half kilos! If it was fat I was losing, rather than muscle and energy, I would probably be pleased.
Nowadays I dream of being able to swallow without thinking about it like everyone else on the planet.
I go see the doctor to get my bandages changed tomorrow and then on Friday he will hopefully remove the stitches. If I'm lucky he'll also have the results of the biopsy they performed on the tumours they removed on Thursday to know what happens next.
This morning was very rough and painful, as has been most mornings, but this afternoon I seem to have enough energy to sit in front of my computer for an hour already.
A big THANK YOU to everyone for their kind wishes, e-mails, gifts and flowers. It's a very good feeling to know there are so many people out there thinking positively. I think it's the best possible weapon.
My family is taking amazing care of me and keeping me going.
More news later...
I got home from the hospital yesterday. A lot of surgery on Thursday and a lot of resting and medication since.
I still can't eat solids so I am very weak and have my ups and downs both physically and emotionally. Thank God for pain killers as they are probably what is keeping me going at the moment.
It's amazing how we take all of the most simplest things in life for granted. Do you have any idea how many times a day you swallow? I certainly never thought about it before. But with the combination of the swelling from the tumour surgery constricting my throat and the fact that they took my tonsils out as well every single swallow is a rather masochistic experience I would gladly live without. Biology was never one of my big subjects so I'm definitely off on the figures. But we must swallow thousands if not tens of thousands of times a day!
I'm eating yoghurt, petits suisses, apple and pear purées, more yoghurt and ice cream. After almost a week of this diet I've lost 2 and a half kilos! If it was fat I was losing, rather than muscle and energy, I would probably be pleased.
Nowadays I dream of being able to swallow without thinking about it like everyone else on the planet.
I go see the doctor to get my bandages changed tomorrow and then on Friday he will hopefully remove the stitches. If I'm lucky he'll also have the results of the biopsy they performed on the tumours they removed on Thursday to know what happens next.
This morning was very rough and painful, as has been most mornings, but this afternoon I seem to have enough energy to sit in front of my computer for an hour already.
A big THANK YOU to everyone for their kind wishes, e-mails, gifts and flowers. It's a very good feeling to know there are so many people out there thinking positively. I think it's the best possible weapon.
My family is taking amazing care of me and keeping me going.
More news later...
Sunday, September 18, 2005
The day the drains came out
This is pretty disgusting to explain... but... Coming out of the wounds are two drain tubes. Each tube goes in to a sort of litre-sized plastic jar. I therefore have both the perf and these two jars attached to me wherever I go. When I have to go to the loo I have to carry along all 3 of these with me. It means that each toilet experience requires careful planning and preparation to leave the bed before I need to rather than when I need to which would be too late.
This morning Dr. Hagege came to remove the drains. I didn't know it was going to be a rough experience. I had assumed it was like removing a perf. He was just going to pull a couple of tubes out. However it turned out to be one of the scariest experiences in my life. They push down on the drain to stop it draining which in turn creates a spurt of blood coming from the artery. He tells me to breathe in, hold it, he pulls and I breathe out. I assume the breathing out method is to avoid me screaming and upsetting the other patients. It worked for the first drain. I exhaled and I cried quietly. When he removed the second drain however it was ridiculously painful. It was like someone shot me in the artery above the shoulder. I breathed out and I didn't move... but I did scream.
As soon as the drain was out however things went down hill. I made signs to him that the room was spinning. He could also see that I had gone all white. He knocked the top of my bed down and thrust my legs up in to the air. I was now hanging half upside down while he tried to put the bandages back on. In the mean time I was now sweating buckets and starting to shiver. They took my blood pressure, which didn't look good, and my pulse.
He told the nurse to immediately inject me with atropine. She said she didn't know if she could get any as the pharmacy cabinet on this floor was locked this being Sunday. He yelled at her that this was one of the 5 elements she was supposed to have with her during a drain removal and that it is on the basic checklist. She said that it was so rare that they needed it she didn't think it was going to be necessary. Luckily Dr. Hagege spared me the rest of their argument and told her to run and find some immediately. It was probably about 2 minutes that she was gone but it felt like a few hours for me. The room was spinning by this time and I felt completely out of control. If I had been drinking I would have felt a lot better as at least I would have known why the room was spinning, known it was my own bloody fault and that throwing up would cure everything. This was not that simple.
The nurse finally got back with the atropine and I felt better almost immediately. Dr. Hagege finished up the bandages, stayed with me for a while until my blood pressure got back to normal and re-assured me that I would be released tomorrow morning. When he left with the nurse he started yelling at her in the hallway and I assume it continued much the same down the hall and in to an office somewhere. I basically passed out for the rest of the morning.
Desney and Alexandra came around in the afternoon. I kicked Alexandra out for a bit while I told Desney what happened. She still amazes me how one of her hugs can cure just about any illness I might go through and make me feel strong. Alex came back and we had a pretty good visit.
I spent the night watching the weekly 2 episodes of E.R., which is particularly strange from a hospital bed, and luckily they gave me something to help me sleep.
This morning Dr. Hagege came to remove the drains. I didn't know it was going to be a rough experience. I had assumed it was like removing a perf. He was just going to pull a couple of tubes out. However it turned out to be one of the scariest experiences in my life. They push down on the drain to stop it draining which in turn creates a spurt of blood coming from the artery. He tells me to breathe in, hold it, he pulls and I breathe out. I assume the breathing out method is to avoid me screaming and upsetting the other patients. It worked for the first drain. I exhaled and I cried quietly. When he removed the second drain however it was ridiculously painful. It was like someone shot me in the artery above the shoulder. I breathed out and I didn't move... but I did scream.
As soon as the drain was out however things went down hill. I made signs to him that the room was spinning. He could also see that I had gone all white. He knocked the top of my bed down and thrust my legs up in to the air. I was now hanging half upside down while he tried to put the bandages back on. In the mean time I was now sweating buckets and starting to shiver. They took my blood pressure, which didn't look good, and my pulse.
He told the nurse to immediately inject me with atropine. She said she didn't know if she could get any as the pharmacy cabinet on this floor was locked this being Sunday. He yelled at her that this was one of the 5 elements she was supposed to have with her during a drain removal and that it is on the basic checklist. She said that it was so rare that they needed it she didn't think it was going to be necessary. Luckily Dr. Hagege spared me the rest of their argument and told her to run and find some immediately. It was probably about 2 minutes that she was gone but it felt like a few hours for me. The room was spinning by this time and I felt completely out of control. If I had been drinking I would have felt a lot better as at least I would have known why the room was spinning, known it was my own bloody fault and that throwing up would cure everything. This was not that simple.
The nurse finally got back with the atropine and I felt better almost immediately. Dr. Hagege finished up the bandages, stayed with me for a while until my blood pressure got back to normal and re-assured me that I would be released tomorrow morning. When he left with the nurse he started yelling at her in the hallway and I assume it continued much the same down the hall and in to an office somewhere. I basically passed out for the rest of the morning.
Desney and Alexandra came around in the afternoon. I kicked Alexandra out for a bit while I told Desney what happened. She still amazes me how one of her hugs can cure just about any illness I might go through and make me feel strong. Alex came back and we had a pretty good visit.
I spent the night watching the weekly 2 episodes of E.R., which is particularly strange from a hospital bed, and luckily they gave me something to help me sleep.
Friday, September 16, 2005
The morning after
I woke up and just about instantly remembered where I was. I then made one of those big mistakes in my life. I swallowed. I felt like the Jets and the Sharks had decided to have a knife fight inside my throat and they just kept missing each other. If I had a voice I probably would have screamed. Then I remembered that pump that I had been avoiding and I actually pushed the button. I heard a beep and I lied back down to let it do its work.
About a half hour later they came in with breakfast. I should have expected it. Yogurt, apple purée, chocolate milk and ice cream. Ice cream for breakfast? I know this would be just about any child's dream, including mine, but it just wasn't appetizing at the moment. I managed to get through one of the yogurts, the cold milk and one of the ice creams. After eating as much as I could I just sat there hoping that some day this would get better and I'd be able to eat more and properly.
I spent most of the morning doing Sudoku puzzles. Lunch was exactly the same meal as breakfast and I ate just as little.
In the afternoon Desney and the girls came to see me. I had tubes coming out of everywhere so I must not have looked great. But they were all positive and full of good thoughts.
Dinner was again exactly the same meal as breakfast and although I ate a bit more I certainly wasn't enthusiastic.
A day to get through...
About a half hour later they came in with breakfast. I should have expected it. Yogurt, apple purée, chocolate milk and ice cream. Ice cream for breakfast? I know this would be just about any child's dream, including mine, but it just wasn't appetizing at the moment. I managed to get through one of the yogurts, the cold milk and one of the ice creams. After eating as much as I could I just sat there hoping that some day this would get better and I'd be able to eat more and properly.
I spent most of the morning doing Sudoku puzzles. Lunch was exactly the same meal as breakfast and I ate just as little.
In the afternoon Desney and the girls came to see me. I had tubes coming out of everywhere so I must not have looked great. But they were all positive and full of good thoughts.
Dinner was again exactly the same meal as breakfast and although I ate a bit more I certainly wasn't enthusiastic.
A day to get through...
Thursday, September 15, 2005
La Totale
They woke me up quite early in the morning, about 06:30, to have me take my quick disinfectant shower, jump on the gurney and right up to the operation. Dr. Hagege greeted me and Dr. Hagant knocked me out.
I woke up after the operation not knowing what had hit me or how long I was out for. I couldn’t speak properly but I was immediately told that was normal. I was sweating, shivering and more than slightly nauseous. I seemed to spend a very long time in the post-op awakening room with the nurses looking over at me quite regularly. Finally I seemed to calm down and they wheeled me back to my room.
I slept for a few hours and they explained to me how to use the morphine pump. As I couldn’t speak well I couldn’t explain that I hated morphine. I still have really bad memories of the experience I had with morphine during my haemorrhoidectomy in 2001. I wasn’t willing to spend half my time throwing up to reduce the other pains. I hate throwing up. This morphine pump had a little button that I was supposed to push when I felt in pain and it would shoot morphine in to my perf and make me feel better. It remained unused…
In the evening Dr. Hagege came to see me and explained a bit about what they had done to me. Wednesday’s scanner had shown more tumours, especially one in my left tonsil, and they therefore went for “La Totale”. The endoscopy was the minimum I they were going to have to do. A tonsillectomy was a likely option and they removed both of my tonsils. Re-opening my wound and removing more tumours higher and lower in the neck was a less-likely and much more invasive option. Dr. Hagege explained that they performed an endoscopy, the tonsillectomy and the “curage ganglionnaire”. They had me open for a good 6 hours and got out all of the tumours that could be removed surgically. Because of the amount of surgery they had to perform I would be in the hospital until Monday morning. He then left me to sleep with these new thoughts…
I woke up after the operation not knowing what had hit me or how long I was out for. I couldn’t speak properly but I was immediately told that was normal. I was sweating, shivering and more than slightly nauseous. I seemed to spend a very long time in the post-op awakening room with the nurses looking over at me quite regularly. Finally I seemed to calm down and they wheeled me back to my room.
I slept for a few hours and they explained to me how to use the morphine pump. As I couldn’t speak well I couldn’t explain that I hated morphine. I still have really bad memories of the experience I had with morphine during my haemorrhoidectomy in 2001. I wasn’t willing to spend half my time throwing up to reduce the other pains. I hate throwing up. This morphine pump had a little button that I was supposed to push when I felt in pain and it would shoot morphine in to my perf and make me feel better. It remained unused…
In the evening Dr. Hagege came to see me and explained a bit about what they had done to me. Wednesday’s scanner had shown more tumours, especially one in my left tonsil, and they therefore went for “La Totale”. The endoscopy was the minimum I they were going to have to do. A tonsillectomy was a likely option and they removed both of my tonsils. Re-opening my wound and removing more tumours higher and lower in the neck was a less-likely and much more invasive option. Dr. Hagege explained that they performed an endoscopy, the tonsillectomy and the “curage ganglionnaire”. They had me open for a good 6 hours and got out all of the tumours that could be removed surgically. Because of the amount of surgery they had to perform I would be in the hospital until Monday morning. He then left me to sleep with these new thoughts…
Wednesday, September 14, 2005
Scanner
I walked to the métro stop and took the train to Liège where I walked to the clinic. I got there at about 09:25 where I then waited in a queue for about 15 minutes. Luckily I had arrived early as it took a good 15 minutes to do all of the paperwork and get me admitted. They explained to me that I would have a double room until this afternoon when I would be transferred to my single room.
A nice nurse brought me and all of my paperwork up to my room where she told me to wait while they checked with the scanner. She came back later to tell me that they had no appointment for me with the scanner. This even though I had verified the appointment the day before when I had done the pre-admission paperwork. She said for me to wait and they would make another appointment for me if possible. I explained that if I didn’t have the scan today the entire operation would be postponed for a week. She said she would see what she could do.
Luckily I was alone. Whoever was supposed to be in the other bed was already in the operating room being operated on. I just kicked back and waited. A couple of hours later they came to get me and told me to go right downstairs for an immediate scan. I took my enormous needle package out of my luggage and went downstairs.
It was nice to not have to sit in the waiting room down there. I went in almost immediately. The scanner looks just like it does on television and in the movies. I particularly remember Mark Greene having to go through this pretty often on E.R.. There’s that plank that magically moves in an out of this huge round tubular machine that looks like it swallows you whole. That is most likely the limit of my explanation as I spent the entire rest of the experience with my eyes closed. I laid back and he injected me with the needle. I learned that the needle goes in to a separate machine which they control remotely and which injects the substance in to me throughout the scan when they want to. Quite impressive bit of machinery they have here. I was told it would take about 10 minutes and all I had to do was not move throughout and there would be a few times when they would tell me not to swallow. That wasn’t difficult as I wasn’t exactly gulping non-stop at that moment. I was having enough trouble breathing regularly let alone swallowing. When it was finished I was starting to tremble a bit which the assistant had seen often before and so it had much more of an impact on me than on him.
After the scan they told me to go back up to my room and they would send up the results. I certainly didn’t need to be told twice to go lie down somewhere. When I got back upstairs they had already transferred me in to my new private room. This was actually a bit of a step sideways rather than a major step up. In my shared room the bed had an automatic riser which allowed me to raise and lower the back of the bed with a sort of wired remote control. On this bed I couldn’t change it without a nurse. In my shared room the shower was in the room. In my new private room the shower was down the hall. I knew perfectly well what it was going to be like after the operation and that I was going to be escorting one of the perf machines around and probably not getting a lot of showers. I don’t know if it was the effect of the medication or the scanner substance or the simple emotional drain of it all but I basically passed out for the rest of the afternoon.
I had a reasonable meal in the evening. As reasonable as a hospital meal gets. They gave me a pill to help me sleep and I was out for the count.
A nice nurse brought me and all of my paperwork up to my room where she told me to wait while they checked with the scanner. She came back later to tell me that they had no appointment for me with the scanner. This even though I had verified the appointment the day before when I had done the pre-admission paperwork. She said for me to wait and they would make another appointment for me if possible. I explained that if I didn’t have the scan today the entire operation would be postponed for a week. She said she would see what she could do.
Luckily I was alone. Whoever was supposed to be in the other bed was already in the operating room being operated on. I just kicked back and waited. A couple of hours later they came to get me and told me to go right downstairs for an immediate scan. I took my enormous needle package out of my luggage and went downstairs.
It was nice to not have to sit in the waiting room down there. I went in almost immediately. The scanner looks just like it does on television and in the movies. I particularly remember Mark Greene having to go through this pretty often on E.R.. There’s that plank that magically moves in an out of this huge round tubular machine that looks like it swallows you whole. That is most likely the limit of my explanation as I spent the entire rest of the experience with my eyes closed. I laid back and he injected me with the needle. I learned that the needle goes in to a separate machine which they control remotely and which injects the substance in to me throughout the scan when they want to. Quite impressive bit of machinery they have here. I was told it would take about 10 minutes and all I had to do was not move throughout and there would be a few times when they would tell me not to swallow. That wasn’t difficult as I wasn’t exactly gulping non-stop at that moment. I was having enough trouble breathing regularly let alone swallowing. When it was finished I was starting to tremble a bit which the assistant had seen often before and so it had much more of an impact on me than on him.
After the scan they told me to go back up to my room and they would send up the results. I certainly didn’t need to be told twice to go lie down somewhere. When I got back upstairs they had already transferred me in to my new private room. This was actually a bit of a step sideways rather than a major step up. In my shared room the bed had an automatic riser which allowed me to raise and lower the back of the bed with a sort of wired remote control. On this bed I couldn’t change it without a nurse. In my shared room the shower was in the room. In my new private room the shower was down the hall. I knew perfectly well what it was going to be like after the operation and that I was going to be escorting one of the perf machines around and probably not getting a lot of showers. I don’t know if it was the effect of the medication or the scanner substance or the simple emotional drain of it all but I basically passed out for the rest of the afternoon.
I had a reasonable meal in the evening. As reasonable as a hospital meal gets. They gave me a pill to help me sleep and I was out for the count.
Tuesday, September 13, 2005
Mysterious flowers
I got home today to find a lovely bouquet of flowers waiting for me.
Just before my last operation I received an enormous and beautiful bouquet of flowers from my favourite Greek lady in the world. The kitchen smelled like Shangri-la for days and it was still there waiting for me when I got back from the clinic.
This afternoon's flowers are beautiful and smell wonderful as well. A pungent tulip smell to them.
However they came from an Asnières florist (A Coeur de Fleurs) with the note Aces tous nos voeux de rétablissement... but no signature! I don't know who they came from. As the notes in French it narrows it down a bit. But I am still confused...
If the anonymous sender of these flowers is reading this blog please click on the Comments link and let us know.
This is my kinda mystery!
Just before my last operation I received an enormous and beautiful bouquet of flowers from my favourite Greek lady in the world. The kitchen smelled like Shangri-la for days and it was still there waiting for me when I got back from the clinic.
This afternoon's flowers are beautiful and smell wonderful as well. A pungent tulip smell to them.
However they came from an Asnières florist (A Coeur de Fleurs) with the note Aces tous nos voeux de rétablissement... but no signature! I don't know who they came from. As the notes in French it narrows it down a bit. But I am still confused...
If the anonymous sender of these flowers is reading this blog please click on the Comments link and let us know.
This is my kinda mystery!
Paperwork, paperwork and more paperwork
Final preparations for the big day(s)...
I drove to my "old" clinic (Clinique Geoffroy Saint-Hilaire) and picked up my file from the anesthesiologist's office. It was actually very, very nice to get out of the house and be doing something physically...
It took quite some time to park but not too bad...
I then drove from there to my "new" clinic (Clinic Turin) which is right next to Saint-Lazare. After going round and round for literally over 30 minutes trying to park I finally drove to the FNAC at Saint-Lazare and pulled in to their parking lot.
I had some lunch and went to the FNAC. Alexandra is going to have to be more and more autonomous this year, as I am not going to be able to accompany her as much as before, and she hopes to have lots of extra-curricular activities (Wednesday English claseses as always but also dance classes and others). I therefore got her her first mobile phone (Nokia 3100) with a prepaid card. I'm sure she's going to be very pleased.
I left the parking lot to go to the clinic and turned round and round again for 45 minutes!!! Thank God for in-car stereo and air-conditioning!
I then went to the clinic to open my file for admissions. Luckily I had all of the necessary papers with me and I was able to get registered. I am still on the waiting list, and hopeful, for a private room.
I drove to my "old" clinic (Clinique Geoffroy Saint-Hilaire) and picked up my file from the anesthesiologist's office. It was actually very, very nice to get out of the house and be doing something physically...
It took quite some time to park but not too bad...
I then drove from there to my "new" clinic (Clinic Turin) which is right next to Saint-Lazare. After going round and round for literally over 30 minutes trying to park I finally drove to the FNAC at Saint-Lazare and pulled in to their parking lot.
I had some lunch and went to the FNAC. Alexandra is going to have to be more and more autonomous this year, as I am not going to be able to accompany her as much as before, and she hopes to have lots of extra-curricular activities (Wednesday English claseses as always but also dance classes and others). I therefore got her her first mobile phone (Nokia 3100) with a prepaid card. I'm sure she's going to be very pleased.
I left the parking lot to go to the clinic and turned round and round again for 45 minutes!!! Thank God for in-car stereo and air-conditioning!
I then went to the clinic to open my file for admissions. Luckily I had all of the necessary papers with me and I was able to get registered. I am still on the waiting list, and hopeful, for a private room.
Monday, September 12, 2005
Confirmation
I got word from my doctor (Dr. Hagege) and the clinic (Clinique Turin) that my surgery has been confirmed for Thursday.
I'm actually quite pleased as I would probably go crazy if I had to wait a week between the scanner and the surgery.
As it is the worry is probably worse than the physical aspects these days. I don't really feel sick. I have a normal amount of energy and I am not in pain. I've got this thing on my neck that pulls at me every now and then. That's just the scar and the swelling underneath. Every now and then I get a sort of twinge in my neck. I believe that is actually my brain producing that purely out of worry. I sometimes have difficulty swallowing. But that too doesn't appear to be entirely physical. I don't know how I feel anymore. I don't know what's psychological and what's physical anymore. I guess everything is a mixture of both, always was and always will be. They're obviously both pretty important and one should not be considered more important than the other.
I really just want to get all of this over with and get to the other side. The other side could be pretty negative, which I don't like to think about too much, or it could be downright positive whereby this all becomes just a bad souvenir. But I'd love to have a time machine which would allow me to just jump a few months, or however long it's going to be, ahead and be through with it all. I just want them to do whatever it is they need to do to me to get rid of this and get on with the next phase of my existence.
The only bad news I got today was that, for the moment, I am in a double-room again. I am on a waiting list for a single room. But I told them that I certainly did not want to delay my surgery just for a single room and I'd accept a double in this case. Everyone is working very quickly, which I assume is for some very good reason I don't want to know about, and I certainly am not going to be the one to slow them down in any way.
I just went and picked up the injection from the pharmacy for the scanner. It's enormous!!! So now I have something else to nightmare over for the next couple of nights...
I'm actually quite pleased as I would probably go crazy if I had to wait a week between the scanner and the surgery.
As it is the worry is probably worse than the physical aspects these days. I don't really feel sick. I have a normal amount of energy and I am not in pain. I've got this thing on my neck that pulls at me every now and then. That's just the scar and the swelling underneath. Every now and then I get a sort of twinge in my neck. I believe that is actually my brain producing that purely out of worry. I sometimes have difficulty swallowing. But that too doesn't appear to be entirely physical. I don't know how I feel anymore. I don't know what's psychological and what's physical anymore. I guess everything is a mixture of both, always was and always will be. They're obviously both pretty important and one should not be considered more important than the other.
I really just want to get all of this over with and get to the other side. The other side could be pretty negative, which I don't like to think about too much, or it could be downright positive whereby this all becomes just a bad souvenir. But I'd love to have a time machine which would allow me to just jump a few months, or however long it's going to be, ahead and be through with it all. I just want them to do whatever it is they need to do to me to get rid of this and get on with the next phase of my existence.
The only bad news I got today was that, for the moment, I am in a double-room again. I am on a waiting list for a single room. But I told them that I certainly did not want to delay my surgery just for a single room and I'd accept a double in this case. Everyone is working very quickly, which I assume is for some very good reason I don't want to know about, and I certainly am not going to be the one to slow them down in any way.
I just went and picked up the injection from the pharmacy for the scanner. It's enormous!!! So now I have something else to nightmare over for the next couple of nights...
Sunday, September 11, 2005
Another anniversary
I just published my previous message and the date popped up.Just 4 years ago, on September 11th, 2001, I lived through what I called, for the longest time, the worst 36 hours of my life. My mother's time was a hell of a lot worse than mine. But it was hell none the less. Thank God (or whoever) for the Internet as that was the only communication which worked throughout.
I also thank the computer gods today for the Internet as it has made my lifestyle possible. This type of instant global communication with friends, family and contacts is just simply priceless.
As I am almost certain I am going to be losing my voice for a while some time soon this instantaneous written communication is going to make my life so much easier during a very difficult time.
September 11th 2001... I haven't forgotten.
News spreads fast
Now that I have a better idea of what I'm dealing with and am actually able to say the words we have started telling friends and business contacts what is happening.
I have had to start re-organising my life and putting everything in to priority order. It's amazing how much of my life that I worry so much about just really isn't that important in the scheme of things.
I have started receiving replies from people who've heard the news. Absolutely every one of them has been positive, supportive and full of hope. I've seen so many stories like this on the news with sad victims receiving messages and such. I have to admit I've never quite seen the interest. Why bother? It ain't the messages which are going to solve the health problem. Now that it's me I feel really quite strange. The positive messages and just the thought that there are a group of people out there, around the world, that are thinking positive for me and are all hopeful is actually quite a strengthening feeling. It's very unexpected... But I have to admit it feels good.
I have had to start re-organising my life and putting everything in to priority order. It's amazing how much of my life that I worry so much about just really isn't that important in the scheme of things.
I have started receiving replies from people who've heard the news. Absolutely every one of them has been positive, supportive and full of hope. I've seen so many stories like this on the news with sad victims receiving messages and such. I have to admit I've never quite seen the interest. Why bother? It ain't the messages which are going to solve the health problem. Now that it's me I feel really quite strange. The positive messages and just the thought that there are a group of people out there, around the world, that are thinking positive for me and are all hopeful is actually quite a strengthening feeling. It's very unexpected... But I have to admit it feels good.
Saturday, September 10, 2005
Yet another doctor
I went and saw Dr. Hagege today. He's an ENT (Eyes - Nose and Throat) specialist.
He put my nose and my throat to sleep with some sort of spritz stuff. He then put a camera up my nostrils and down my throat and looked around.
He found a tumour on my left tonsil. He didn't find much else. The good news is that he didn't find anything spreading down to my lungs or moving upwards.
The bad news is the rest...
On Wednesday morning (14/09) I go to the Clinique Turin for a complete scan of my throat area. They inject with some special ink and then put me in this big moving tunnel and scan the entire area. This is going to allow them find all of the cancer cells and is the most important exam in that it is going to let us know where we stand, or don't, for the future by showing how widespread the cancer is.
On Thursday morning they will knock me out and perform a complete internal endoscopy. Based on the results of that and the scanner, and while I'm still out they may very well perform a tonsillectomy which is not a big deal. If however the results of the scanner and endoscopy are not good then, again while I'm still out, they will re-open my wound of last week's operation and scrape out whatever they have found. They would, in that case, open a bit higher and lower than actually.
Depending on what type of procedure they end up having to do I will be in hospital for 2 days (endoscopy), 3 days (tonsillectomy) or 5 days (re-opening surgical wound).
More disturbing, if that's possible, was the news that it is extremely likely that I will have to go through x-ray therapy. The doctor considered this good news in that I will most likely not have to go through chemotherapy but rather only x-ray therapy.
I will have external x-ray therapy. Using the scanner results as a sort of shooting target diagram they point an x-ray pistol at my neck and shoot high doses of x-rays in the cancerous areas to kill all of the cancer cells. Unfortunately I will have to go through this every day (Monday through Friday) for EIGHT WEEKS. I am not looking forward to any of this. Apparently it's going to be very difficult for me to work during this period. However that's for an employee who works normal hours. I am going to truly try and work 2 to 3 hours in the evenings when I have energy. I have a lot of projects on at the moment, many of which I am already behind on, and I am not going to allow this to slow me down that much. I also am going to need to be able to do some billable work during this time. Although the advantage of not being an employee is that I can work when I can and when I want one of the disadvantages is I have not such thing as paid sick leave. If I don't work I don't get paid. It's very simple. I therefore have to do some work during this time to keep alive both mentally and financially...
As you can imagine I am going through all of the standard emotions (depressed, sad, angry, scared, sad, scared, sad and did I mention scared?).
Now that I have actual results and know what I have (throat cancer) I am going to be spending the rest of the afternoon writing to everyone to let them know and to get my life in order (resigning as President of the Parents' Association at Jess' school, warning my clients of my lack of availability and probably lack of voice and all of the medical paperwork). I'm not even thinking of the 2-month x-ray therapy treatment yet as I don't know when that is going to start and can't organise around it yet...
After my examination with the doctor I went to W.H. Smith's to buy some books as I don't know how long I'll be in the hospital for.
I'm just living day-by-day now and preparing myself for Wednesday...
He put my nose and my throat to sleep with some sort of spritz stuff. He then put a camera up my nostrils and down my throat and looked around.
He found a tumour on my left tonsil. He didn't find much else. The good news is that he didn't find anything spreading down to my lungs or moving upwards.
The bad news is the rest...
On Wednesday morning (14/09) I go to the Clinique Turin for a complete scan of my throat area. They inject with some special ink and then put me in this big moving tunnel and scan the entire area. This is going to allow them find all of the cancer cells and is the most important exam in that it is going to let us know where we stand, or don't, for the future by showing how widespread the cancer is.
On Thursday morning they will knock me out and perform a complete internal endoscopy. Based on the results of that and the scanner, and while I'm still out they may very well perform a tonsillectomy which is not a big deal. If however the results of the scanner and endoscopy are not good then, again while I'm still out, they will re-open my wound of last week's operation and scrape out whatever they have found. They would, in that case, open a bit higher and lower than actually.
Depending on what type of procedure they end up having to do I will be in hospital for 2 days (endoscopy), 3 days (tonsillectomy) or 5 days (re-opening surgical wound).
More disturbing, if that's possible, was the news that it is extremely likely that I will have to go through x-ray therapy. The doctor considered this good news in that I will most likely not have to go through chemotherapy but rather only x-ray therapy.
I will have external x-ray therapy. Using the scanner results as a sort of shooting target diagram they point an x-ray pistol at my neck and shoot high doses of x-rays in the cancerous areas to kill all of the cancer cells. Unfortunately I will have to go through this every day (Monday through Friday) for EIGHT WEEKS. I am not looking forward to any of this. Apparently it's going to be very difficult for me to work during this period. However that's for an employee who works normal hours. I am going to truly try and work 2 to 3 hours in the evenings when I have energy. I have a lot of projects on at the moment, many of which I am already behind on, and I am not going to allow this to slow me down that much. I also am going to need to be able to do some billable work during this time. Although the advantage of not being an employee is that I can work when I can and when I want one of the disadvantages is I have not such thing as paid sick leave. If I don't work I don't get paid. It's very simple. I therefore have to do some work during this time to keep alive both mentally and financially...
As you can imagine I am going through all of the standard emotions (depressed, sad, angry, scared, sad, scared, sad and did I mention scared?).
Now that I have actual results and know what I have (throat cancer) I am going to be spending the rest of the afternoon writing to everyone to let them know and to get my life in order (resigning as President of the Parents' Association at Jess' school, warning my clients of my lack of availability and probably lack of voice and all of the medical paperwork). I'm not even thinking of the 2-month x-ray therapy treatment yet as I don't know when that is going to start and can't organise around it yet...
After my examination with the doctor I went to W.H. Smith's to buy some books as I don't know how long I'll be in the hospital for.
I'm just living day-by-day now and preparing myself for Wednesday...
Friday, September 09, 2005
Bad News
Dr. Girard called me this afternoon with the results of the biopsy they did on the tumour they removed from my neck.
It was not what I wanted to hear. The tumour was cancerous. The tumour was actually a secondary tumour in that it is the product of another tumour and not the primary tumour itself. This means there is another tumour in my neck area. This means that they are going to have to find it as quickly as possible and they are going to have to remove it (surgically) as quickly as possible.
But even worse news was that I am either going to have to go through x-ray therapy or chemotherapy to completely kill of all of the cancer cells in the region so that they do not come back and produce other tumours in the future.
I have to go see an ENT (ORL in French) specialist tomorrow morning for a full internal exam of the area and to schedule the rest.
I spent most of the rest of the afternoon crying...
I called Desney and told her immediately after Dr. Girard told me.
When Desney got home and the girls got home from school I told the family and explained what is going on. Jessica was very upset and ran away to her room. Alexandra I don't believe has fully understood the gravity of the situation which is perhaps not such a bad thing.
I went up and had a long talk with Jessica one-on-one. I shared my thoughts with her. How sad I am. How angry I am. How sorry I am. The stereotypical question of "Why me???". She replied with the stereotypically egotistical teenager's response of "Why you? ... Why ME???"
We finally settled down and watched a movie (Die Hard 3) and ordered from pizza hut...
I spent most of the evening crying...
It was not what I wanted to hear. The tumour was cancerous. The tumour was actually a secondary tumour in that it is the product of another tumour and not the primary tumour itself. This means there is another tumour in my neck area. This means that they are going to have to find it as quickly as possible and they are going to have to remove it (surgically) as quickly as possible.
But even worse news was that I am either going to have to go through x-ray therapy or chemotherapy to completely kill of all of the cancer cells in the region so that they do not come back and produce other tumours in the future.
I have to go see an ENT (ORL in French) specialist tomorrow morning for a full internal exam of the area and to schedule the rest.
I spent most of the rest of the afternoon crying...
I called Desney and told her immediately after Dr. Girard told me.
When Desney got home and the girls got home from school I told the family and explained what is going on. Jessica was very upset and ran away to her room. Alexandra I don't believe has fully understood the gravity of the situation which is perhaps not such a bad thing.
I went up and had a long talk with Jessica one-on-one. I shared my thoughts with her. How sad I am. How angry I am. How sorry I am. The stereotypical question of "Why me???". She replied with the stereotypically egotistical teenager's response of "Why you? ... Why ME???"
We finally settled down and watched a movie (Die Hard 3) and ordered from pizza hut...
I spent most of the evening crying...
Wednesday, September 07, 2005
Scarface
I took off my bandages this morning and had my first real shower since the operation. It feels wonderful to feel clean again. Unfortunately that's about the only good feeling I can mention at the moment. I have to admit to being a bit depressed...The scar is actually much, much worse than how it looks in this photo. The swelling of my face is also not quite so apparent in this photo. Basically it's one big bruise inside. As I touch it around the scar it's like a big internal black and blue mark. It feels much better with the bandage off and I have a bit more freedom of movement. I had thought that it was the bandage that was constraining my movement. To a certain extent that was so. But to a certain extent it's the wound itself which can't be stretched too much in either direction.
I obviously hope the swelling will go down and the scar will fade a bit with time...
I hate time.
;-(
Monday, September 05, 2005
Jessica's 15th
When Alex got home from school she finished her work on her present for Jessica. She picked some flowers from Desney's garden and wrapped the stem of each flower, individually (!), with aluminium foil and put them in the basket she had made.
When Desney got home we dragged the new mattress we had been hiding in the cellar up to the living room. We had to go a bit slowly so I didn't stretch anything I shouldn't in my neck...
Jessica finally got home and had brought her friend Mercedes with her. We gave her her presents and she was quite pleased... not overly enthusiastic or thankful... but pleased.
We all went out to our local Japanese restaurant as that's what Jessica wanted for her birthday and had been talking about for at least a month. I obviously felt a bit uncomfortable going out to a restaurant in my present condition (unshaved hair not washed since Thursday, large bandage and a head I can't turn more than 45 degrees). But it went well... We had a good meal and Jessica truly enjoyed it. Of course she wasn't paying so it was easy to enjoy!
All in all it went well... and in another few months Alex turns 11!
When Desney got home we dragged the new mattress we had been hiding in the cellar up to the living room. We had to go a bit slowly so I didn't stretch anything I shouldn't in my neck...
Jessica finally got home and had brought her friend Mercedes with her. We gave her her presents and she was quite pleased... not overly enthusiastic or thankful... but pleased.
We all went out to our local Japanese restaurant as that's what Jessica wanted for her birthday and had been talking about for at least a month. I obviously felt a bit uncomfortable going out to a restaurant in my present condition (unshaved hair not washed since Thursday, large bandage and a head I can't turn more than 45 degrees). But it went well... We had a good meal and Jessica truly enjoyed it. Of course she wasn't paying so it was easy to enjoy!
All in all it went well... and in another few months Alex turns 11!
Better out than in!
That's what Shrek always says!On Friday I arrived at the clinic at 07:45 (15 minutes early) and waited around until the admissions office opened. I was first in the queue. I was admitted. But they didn't have any private rooms left. There was therefore somebody already in MY room when I arrived.
They made me take a shower in betadine, even though I had showered before I left, and I got to wear that ridiculous hospital outfit they always force us to wear. I found out just before going up to surgery that I had apparently put it on backwards and had to switch it around. However it certainly made no difference as regards covering any particular part of my body. I took of my earrind and my engagement ring, they let me keep on my wedding ring as I couldn't get it off, and up I went to surgery.
The anesthesiologist was really very kind and he spoke of the hills of the Languedoc-Roussillon as he pricked me with the needle. That's the last bit I remember...
Woke up in the waking up room with a lovely nurse making sure I was OK. I was really quite pleased to see her and almost as pleased to hear my own voice coming out of my throat. I don't remember any of our conversation. I just remember I really enjoyed having a conversation at all!
They brought me down to MY room and the other bed was empty. I thanked my lucky stars. However within a half and hour they brought somebody else in. He had an eye operation and had bandages over both eyes. He was enormous which is always nice as it makes me feel thin.
He was a definite pain for the nurses, and therefore me, throughout the night:
- He undid his bandages by accident at one point
- He kicked through, and broke, the bottom of the bed which was apparently too short
- He knocked over a bottle of water
I slept throughout most of the day and therefore had a bit of difficulty sleeping at night. My neighbour's antics didn't help much. In addition, as always, the (male) nurse would wake me up every hour or two to take my blood pressure and temperature. The anti-coagulant jab in the thigh at about midnight was also well-appreciated...
Saturday I awoke glad that the night was finished. It was a very, very hot evening and my neighbour did not like sleeping with the window open. But when the nurse came in she, kindly, opened the window and the door to the hallway and left them open to create a draft.
After breakfast my anesthesist came to see me and we had a chat while he prescribed pain-killers and anti-inflammatories for the rest of the week. My neighbour checked out at 10:00 and the morning monotony was broken up by the nurse cleaning up the room and making the bed. I proceeded to drench my new sheets with sweat in about half an hour which made them feel like my old sheets all over again...
I rented a television before the operation. Unfortunately the television was hanging from the ceiling about 90 degress left of my bed. After the operation I could not turn my head to the left or look up. I therefore ended up using my television more as a radio and listened to the news (mostly about the ridiculously embarassing post-hurrican disaster situation in America).
In the afternoon Desney and the girls showed up. It was wonderful to have a visit and to hear all about their first day at school. This was the first time ever that I was not at home for the rentrée and I definitely missed it. All news was good news and they stayed for quite a while before heading off to do more school shopping.
Saturday night was much easier as they basically left me alone after my evening medication. No more pressure and temperature readings. Being alone in the room meant no disturbances. As I had slept so much during the day it was not easy to sleep at night. By holding on to the equipment I am supposed to use to pull myself up out of bed I was able to turn and watch TV. This did wonders for my right bicep. But unfortunately I wasn not exactly rewarded with quality programming... I awoke a bit early waiting for breakfast and starting the countdown to checking out.
After breakfast the nurse came and changed my bandages. She says the scar/wound looks fine. However the painful bit was a bit of an allergic reaction to the bandage which I have behind the wound. I was hoping that the new bandage would be much smaller than the original one. Unfortunately it is about the same size and just as restricting.
After all of the paperwork I took a taxi home to find Desney doing chores, as always, Jessica in front of the television, as always, and Alexandra at school.
I sat on MY toilet and washed myself as best possible in MY bathroom. It was a great feeling.
I didn't do much during the day and I didn't turn on my computer at all. To take my mind off of everything I watched a bit of television so Alex and I watched three episodes of M*A*S*H* (2nd season on DVD). We had dinner out on the terrasse, which was wonderful, and Desney was made some easy to chew fish and rice. I watched as the rest of the family drank a wonderful bottle of Chablis Premier Cru (Moreau-Naudet) and I drank my water and took my pills. To end the evening, and remind myself what I left behind, we watched the new (for us) episodes of E.R..
Now it's time to just get through the next couple of days until I can finally take the bandages off on Wednesday morning...
Oh... it's also Jessica's 15th birthday today!
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