I was transferred yesterday from the visceral surgery department to Ear, Nose & Throat. They are trying to stabilise the problem of excessive saliva flow which tends to gather during the night and block up the cannula, leading to breathing problems. I've got a much smaller room in this part of the hospital, but I suppose it will do for two or three days.
The doctor in charge here appeared for the first time this morning and gave me a very nasty shock. He started talking about getting the problem stabilised and then sending me straight home. I said I didn't want to go home until I could start eating and drinking "normally" again. That seemed to startle him. It led to quite a long discussion. He said we had all known that it was going to be an extremely difficult operation and lots of things could go wrong. No-one foresaw the problem with the massive saliva production and no-one expected that to lead to other problems, like the saliva that wasn't spat out sliding down the windpipe into the lungs. No-one expected the vocal chords to be damaged, although it was always a possibility. It was conceivable now that I might have to live with this horrible cannula for the rest of my life, and there was no guarantee at all that eating or drinking "normally" would ever be possible again. They would try to find some way of creating a swallowing route, perhaps with another stent, but that would all have to be discussed with the gastroenterologists and others.
I don't accept all this negative nonsense. It might take a long time before things are put right, but I refuse to accept that there are no feasible solutions. I haven't suffered 3 months of hospital for a negative outcome. Time to fight even more now.
Tuesday, 28 December 2010
Friday, 24 December 2010
The Christmas that never was
Christmas Eve (which is when most of the celebrations take place here on the continent. The 25th is pretty much Boxing Day over here.). I'm not happy about spending the whole Christmas holiday in hospital, but perhaps it's just as well. Things are gradually healing and being treated, and with all the breathing emergencies (I've now had six of them), I'm glad I'm not alone at home.
To cheer myself up, I ordered an iPad yesterday. Apple have confirmed that it should be delivered to the hospital by 30th December, so that will keep me occupied until Linda arrives and after she has left again.
Another plus-point about being here is that at least I'm out of the appalling weather. It's warm, dry and free of snow in my room...!!!
My son Danny, together with his better half Isabel and my grandson Dean will be visiting me tomorrow, so that will kill another couple of hours. On the whole, it might be the Christmas that never was, but it's not that bad really.
Merry Christmas to everyone who reads this. And, of course, best wishes for a fantastic 2011.
To cheer myself up, I ordered an iPad yesterday. Apple have confirmed that it should be delivered to the hospital by 30th December, so that will keep me occupied until Linda arrives and after she has left again.
Another plus-point about being here is that at least I'm out of the appalling weather. It's warm, dry and free of snow in my room...!!!
My son Danny, together with his better half Isabel and my grandson Dean will be visiting me tomorrow, so that will kill another couple of hours. On the whole, it might be the Christmas that never was, but it's not that bad really.
Merry Christmas to everyone who reads this. And, of course, best wishes for a fantastic 2011.
Tuesday, 21 December 2010
Heavy going
A lot has happened in just a few days. I ran into a spell of breathlessness for the fourth time and had to be wheeled down to the "shock room" again for a bronchioscopy, meaning a camera on the end of a tube being manouevered into my bronchial bits. This time, the culprit was a large blood-clot that was too big to cough up. It was blocking the air passages and damn nearly suffocated me. Fortunately, it was quickly and efficiently removed.
This morning, a larger cannula was fitted. It allows more air through.
I spent an hour having an ultrasonic scan of my heart which turned out fine. I have no idea why they wanted that to be done because I haven't had any heart problems to speak of. Still, it's a comfort to know that there are no ticker problems.
My daily walks with the physiotherapist are getting longer and longer. One foot still isn't as flexible as it should be, but we're working on it.
I bumped into the professor during this afternoon's walk. He has consistently moaned about my massive production of saliva but hasn't found a way of stemming it. Now he says if I can hold out for just another three or four days, he will be able to remove the stent (I didn't know I even had one of those!) and that should put an immediate stop to all this saliva problem. I hope he's right. I can't (yet) swallow the saliva in the normal way but have to spit it out. That's a nuisance during the day, but it's even worse overnight. I generally wake up with a sopping wet pillow. Very unpleasant.
On the whole, I suppose it's true to say that every day is bringing just a little bit of progress and the days are being ticked off quite quickly. I am still on schedule for release sometime in the month of January. The big step forward will be when I can start eating and drinking. The next one will be when I get my voice back, or at least am able to speak again. There are quite a few "little triumphs" to look forward to.
This morning, a larger cannula was fitted. It allows more air through.
I spent an hour having an ultrasonic scan of my heart which turned out fine. I have no idea why they wanted that to be done because I haven't had any heart problems to speak of. Still, it's a comfort to know that there are no ticker problems.
My daily walks with the physiotherapist are getting longer and longer. One foot still isn't as flexible as it should be, but we're working on it.
I bumped into the professor during this afternoon's walk. He has consistently moaned about my massive production of saliva but hasn't found a way of stemming it. Now he says if I can hold out for just another three or four days, he will be able to remove the stent (I didn't know I even had one of those!) and that should put an immediate stop to all this saliva problem. I hope he's right. I can't (yet) swallow the saliva in the normal way but have to spit it out. That's a nuisance during the day, but it's even worse overnight. I generally wake up with a sopping wet pillow. Very unpleasant.
On the whole, I suppose it's true to say that every day is bringing just a little bit of progress and the days are being ticked off quite quickly. I am still on schedule for release sometime in the month of January. The big step forward will be when I can start eating and drinking. The next one will be when I get my voice back, or at least am able to speak again. There are quite a few "little triumphs" to look forward to.
Saturday, 18 December 2010
Still a long way to go
The Professor dropped by this morning and confirmed my worst suspicions. I have to stay here in hospital for another 3 to 6 weeks!
I won't bother to describe how I feel about it. I imagine you can draw your own conclusions.
I won't bother to describe how I feel about it. I imagine you can draw your own conclusions.
Wednesday, 15 December 2010
More uncertainty
It's now almost exactly 3 months since the first attempt at removing my oesophagus was aborted. In the meantime, everything that has happened has been recorded in this blog. Looking back through the whole story, there's one theme that's there all the time - uncertainty.
On 11th December, the professor announced that I had to hold out for another 14 days, by which time I would be ready for release. That would have made it Christmas Day, and no-one is going to be released from this place on Christmas Day, so the target-date was the 27th. A couple of days later, the professor again mentioned the 27th.
This morning, he arrived with four of his minions and muttered to them for about 15 minutes. That's something that drives me crazy about this guy - he talks about me to his colleagues while I'm sitting there, but he won't talk TO me directly so I have to interpret what he's saying. Anyway, this morning, he seemed far less positive. There's still a lot that needs to happen before I can be sent home. The original stoma hole appears to be closing on its own, but the professor still hasn't decided whether to help it along by stitching it or not. That has to be completely closed before anything else can happen. Then the tracheostoma has to "stabilise", whatever that means. Then something has to be done to get my speech back. And so on, and so on. When the duty nurse told the professor that I wanted to be home for Christmas, he dropped his voice to a whisper and shook his head. I could just about make out that he was saying "no ways".
So the uncertainty continues and I'm kicking my heels here while nothing much is happening. All but one single tube has gone now and I'm also making a bit of progress in getting around on my feet, so it's not all lost time. But still, the way things are going, I can see me still being stuck here well into January. Given that Linda is flying over on 31st December, that would be awful.
I know I have to be patient. I have been for 3 solid months. But it's becoming increasingly difficult now. I want to resume my life, not languish here for more weeks or months.
On 11th December, the professor announced that I had to hold out for another 14 days, by which time I would be ready for release. That would have made it Christmas Day, and no-one is going to be released from this place on Christmas Day, so the target-date was the 27th. A couple of days later, the professor again mentioned the 27th.
This morning, he arrived with four of his minions and muttered to them for about 15 minutes. That's something that drives me crazy about this guy - he talks about me to his colleagues while I'm sitting there, but he won't talk TO me directly so I have to interpret what he's saying. Anyway, this morning, he seemed far less positive. There's still a lot that needs to happen before I can be sent home. The original stoma hole appears to be closing on its own, but the professor still hasn't decided whether to help it along by stitching it or not. That has to be completely closed before anything else can happen. Then the tracheostoma has to "stabilise", whatever that means. Then something has to be done to get my speech back. And so on, and so on. When the duty nurse told the professor that I wanted to be home for Christmas, he dropped his voice to a whisper and shook his head. I could just about make out that he was saying "no ways".
So the uncertainty continues and I'm kicking my heels here while nothing much is happening. All but one single tube has gone now and I'm also making a bit of progress in getting around on my feet, so it's not all lost time. But still, the way things are going, I can see me still being stuck here well into January. Given that Linda is flying over on 31st December, that would be awful.
I know I have to be patient. I have been for 3 solid months. But it's becoming increasingly difficult now. I want to resume my life, not languish here for more weeks or months.
Saturday, 11 December 2010
Sad news about Christmas
Well, eventually, everything was done in a 6-hour operation. I now have to heal, and the unfortunate news is that I probably won't have healed enough to be released prior to Christmas after all. The professor estimated 14 days as from yesterday, which brings us to the 25th, and I obviously won't be released on Christmas Day itself.
So now I just have to try to get fit or at least mobile and while away the days until everything has healed, however long it takes.
So now I just have to try to get fit or at least mobile and while away the days until everything has healed, however long it takes.
Wednesday, 8 December 2010
On hold
I was in the starting blocks all day yesterday, but in fact it was seven in the evening before the Professor condescended to drop by. He looked at my war wounds and seemed very undecided as to how to proceed. In the end he just said he would think about it and sort something out either today (Wednesday) or tomorrow.
I had an unusually good night's sleep and was hardly awake this morning when the Prof turned up again, this time accompanied by half a dozen of his disciples. He had another look at the wounds and announced what he intends to do tomorrow (Thursday):
1. Sew up the original stoma hole
2. Replace the tracheostoma with a larger one
3. Do an endoscopy on the "new oesophagus" to check for any leaks and to widen it so that I can start to at least drink normally.
He seems satisfied that everything is coming along nicely. This morning, at his command, many of the tubes were removed and I only have a few left. That's always a sign of positive progress.
One of the nurses put a bit of a dampener on things when she said that I might not be ready for release by Christmas. I told her I bloody well would be...!!
I had an unusually good night's sleep and was hardly awake this morning when the Prof turned up again, this time accompanied by half a dozen of his disciples. He had another look at the wounds and announced what he intends to do tomorrow (Thursday):
1. Sew up the original stoma hole
2. Replace the tracheostoma with a larger one
3. Do an endoscopy on the "new oesophagus" to check for any leaks and to widen it so that I can start to at least drink normally.
He seems satisfied that everything is coming along nicely. This morning, at his command, many of the tubes were removed and I only have a few left. That's always a sign of positive progress.
One of the nurses put a bit of a dampener on things when she said that I might not be ready for release by Christmas. I told her I bloody well would be...!!
Monday, 6 December 2010
The healing process
I was transferred to my own room on Saturday and am feeling much better now. All the intrusive treatment is over; now it's a question of healing, and that seems to be progressing very well. I am still very hopeful of being at home for Christmas.
My vocal chords are still largely lame, although I can now at least whisper which wasn't possible 2 days ago.
My vocal chords are still largely lame, although I can now at least whisper which wasn't possible 2 days ago.
Saturday, 4 December 2010
Rather confused
I have absolutely no idea when I’m going to be able to send this off but I’ll write it anyway. It is now Friday, 3rd December and I have been ensconced in the Intensive Care Unit since I came out of the operation on Monday. Most of the nursing staff are nice enough, but this place operates noisily around the clock. I don’t think I’ve had more than about 2 hours sleep at a stretch all this week.
The latest reason for holding me here instead of transferring me down to my private room is that a sort of canal they built into my throat is leaking secretion and it has to be repaired in yet another operation – the third – sometime today. I’ll be under full anaesthetic once again.
I’m trying to adopt Linda’s attitude that the exhaust pipe has been replaced and now there are just a few nuts and bolts to adjust, but it’s very difficult in these surroundings. For the past two days, there have been operations going on right next to me, separated only by a curtain. I can hear every word. I can’t understand most of them but I can hear them!
-----
(Later)
The operation went on for about 3 hours. Actually, it seems that the doctors have manoeuvred themselves into an impossible position. They can’t find a way to stop the secretion leak altogether.
It was surreal when I woke up. I thought at first that I was watching a movie. It took me ages to realise that THIS WAS REALITY! Oh well, I have reason to believe that the worst is over and I should finally get back to my own room tomorrow. I very sincerely hope so! I’ll wind up a mass murderer if I have to stay here much longer!
The latest reason for holding me here instead of transferring me down to my private room is that a sort of canal they built into my throat is leaking secretion and it has to be repaired in yet another operation – the third – sometime today. I’ll be under full anaesthetic once again.
I’m trying to adopt Linda’s attitude that the exhaust pipe has been replaced and now there are just a few nuts and bolts to adjust, but it’s very difficult in these surroundings. For the past two days, there have been operations going on right next to me, separated only by a curtain. I can hear every word. I can’t understand most of them but I can hear them!
-----
(Later)
The operation went on for about 3 hours. Actually, it seems that the doctors have manoeuvred themselves into an impossible position. They can’t find a way to stop the secretion leak altogether.
It was surreal when I woke up. I thought at first that I was watching a movie. It took me ages to realise that THIS WAS REALITY! Oh well, I have reason to believe that the worst is over and I should finally get back to my own room tomorrow. I very sincerely hope so! I’ll wind up a mass murderer if I have to stay here much longer!
Sunday, 28 November 2010
On the finishing straight
Well, here we go. It's Sunday. Danny will be coming to collect me in a couple of hours and then it's off for the (hopefully) final stretch of a long, long ordeal. I'm looking forward to waking up in intensive care in the knowledge that the stoma has gone and the task from then on is to gather strength so that I'm in a reasonable condition for when I'm released shortly before Christmas. Who knows? - I might even be able to eat something modestly along the lines of a Christmas dinner! That would be a nice reward for all the misery I've gone through.
I don't suppose I'll be able to post anything more on here for a week or so. I'll report in again as soon as I can.
I don't suppose I'll be able to post anything more on here for a week or so. I'll report in again as soon as I can.
Tuesday, 23 November 2010
Result!
I had to wait an hour beyond the appointment time this morning, but it was worth it in the end. The Professor was in an unusually jolly mood and told me that I am to check in to the hospital next Friday afternoon. Once I'm checked in, I can either stay there for the weekend or go home until Sunday. THE OPERATION IS FIXED FOR MONDAY, 29TH NOVEMBER!!! A whole day is reserved for it, which is what I expected.
The surgeon said there was no point in worrying about little infections in the meantime. Everything that needs to be fixed will be done on Monday. Until then, no antibiotics.
The recovery time after the operation is likely to be 2 to 3 weeks.
At long last - the finishing line is in sight. I am absolutely delighted.
The surgeon said there was no point in worrying about little infections in the meantime. Everything that needs to be fixed will be done on Monday. Until then, no antibiotics.
The recovery time after the operation is likely to be 2 to 3 weeks.
At long last - the finishing line is in sight. I am absolutely delighted.
Friday, 19 November 2010
Good news with a reservation
The PET didn't detect any cancer cells in the body so that was a huge relief. On the other hand, it found an infection at the top of the lungs and that now has to be investigated. I'm just hoping that it's something they can combat with antibiotics and that it doesn't cause any delays.
I now have an appointment to see the lead surgeon on Tuesday morning. That should then provide some concrete information about further steps.
I now have an appointment to see the lead surgeon on Tuesday morning. That should then provide some concrete information about further steps.
Wednesday, 17 November 2010
Now comes the scary bit
Well, things are still moving as scheduled. I went to see the oncologists on Monday and was told - much to my amazement - that considering what I was going through, I actually looked pretty good..! Could have fooled me. They took a blood sample for analysis and otherwise wouldn't commit themselves to anything. I should go for the PET on Wednesday (today, and of course I went), and then phone them on Thursday afternoon. They would give me the results and - if they can nail him down for five minutes - extort an appointment with the surgeon for either Monday or Tuesday next week.
Irene drove me to the hospital this morning for the PET. I've been in that tunnel so many times that I've lost count, but I was a bit anxious this morning. If I lie flat on my back for more than about 2 minutes, I generally go into coughing spasms. As it happened, it was okay and the process took its normal course. I was back home at lunchtime. Irene, who was my late wife's best friend for thirty-odd years, has been extremely kind and supportive. I was all the more grateful for her "taxi service" this morning because the weather is bitterly cold, grey and damp. Waiting around for trams wouldn't have been fun.
The scary bit comes tomorrow, when I phone to get the results. My understanding is that if everything is clear, there should be nothing standing in the way of the second operation. They wouldn't comment on what would happen if the PET wasn't completely clear. So once again, for the umpteenth time, I have to persuade myself that everything is perfect and there's nothing to worry about.
The nurse has just been here and changed the dressings, so now I've got the rest of the day to myself. Loads of clearing up still to do, but I'll just take it bit by bit.
Irene drove me to the hospital this morning for the PET. I've been in that tunnel so many times that I've lost count, but I was a bit anxious this morning. If I lie flat on my back for more than about 2 minutes, I generally go into coughing spasms. As it happened, it was okay and the process took its normal course. I was back home at lunchtime. Irene, who was my late wife's best friend for thirty-odd years, has been extremely kind and supportive. I was all the more grateful for her "taxi service" this morning because the weather is bitterly cold, grey and damp. Waiting around for trams wouldn't have been fun.
The scary bit comes tomorrow, when I phone to get the results. My understanding is that if everything is clear, there should be nothing standing in the way of the second operation. They wouldn't comment on what would happen if the PET wasn't completely clear. So once again, for the umpteenth time, I have to persuade myself that everything is perfect and there's nothing to worry about.
The nurse has just been here and changed the dressings, so now I've got the rest of the day to myself. Loads of clearing up still to do, but I'll just take it bit by bit.
Saturday, 13 November 2010
Almost another week gone
Apart from everything else, I'm suffering from a bad conscience. Since arriving back home, I've effectively closed myself off from the outside world, including family and friends. I haven't felt like talking to anyone (difficult anyway because my voice is a cross between a croak and a whisper) and I even feel embarrassed when I see myself in the mirror, never mind having others seeing me. My weight has dropped to less than 65 kilos (just over 10 stone), my hair has thinned to the point where it almost looks comical, my eyes are unfocused and I generally look like a survivor from a concentration camp.
The week has been dominated by sorting out and administering medication three times a day, trying to keep up with the tube feeding regime, racing occasionally to the loo (the diarrhoea problem has now gone on for just over six weeks) and sleeping. Lots of sleeping. Far too much, really. There are so many things that I should really get done, but I keep on putting them off. I don't seem to be able to stay active for more than about an hour at a time and then I'm exhausted again.
Considering that the first operation was on 27th September, I feel like a train that's been parked away on rusty sidings ever since then. Apart from two cycles of chemotherapy and the not very constructive weeks in Mammern and Susenberg, nothing has happened. I have an appointment on Monday morning with the oncologists and a PET-CT on Wednesday. I'm hoping that once they see the condition I'm in, they'll get their fingers out and do something because I'm rapidly running out of patience. The weaker I become, the less likely it is that the second operation will take place soon. I'm just praying that I get a date very soon now and can enter the final phase of treatment with the operation so that I'm on the road to recovery by Christmas.
The week has been dominated by sorting out and administering medication three times a day, trying to keep up with the tube feeding regime, racing occasionally to the loo (the diarrhoea problem has now gone on for just over six weeks) and sleeping. Lots of sleeping. Far too much, really. There are so many things that I should really get done, but I keep on putting them off. I don't seem to be able to stay active for more than about an hour at a time and then I'm exhausted again.
Considering that the first operation was on 27th September, I feel like a train that's been parked away on rusty sidings ever since then. Apart from two cycles of chemotherapy and the not very constructive weeks in Mammern and Susenberg, nothing has happened. I have an appointment on Monday morning with the oncologists and a PET-CT on Wednesday. I'm hoping that once they see the condition I'm in, they'll get their fingers out and do something because I'm rapidly running out of patience. The weaker I become, the less likely it is that the second operation will take place soon. I'm just praying that I get a date very soon now and can enter the final phase of treatment with the operation so that I'm on the road to recovery by Christmas.
Monday, 8 November 2010
A different kind of stress
Well, as planned, Danny collected me from Susenberg early this morning and drove me home with half a ton of luggage.
Since returning to within my own four walls, it has been somewhat hectic. The phone has hardly stopped ringing for one thing. Then two nurses from Spitex, the home nursing organisation, arrived at 2 o'clock and gathered information for 2 solid hours. Apart from anything else, the stoma was leaking again, so one of the ladies had the dubious pleasure of replacing it - her first ever experience of stoma installation. It seems to be okay at the moment. Before that was finished, another woman arrived with all the equipment for drip feeding. By the time I had been instructed on which medication to take at which times (there are about 10 different medicines) and how to fit all the feeding into a 24-hour day, my head was spinning. It's now late afternoon and the place looks like a tip. There's all the luggage to unpack, plus loads of boxes and containers and lists and leaflets and God knows what else standing or lying all over the place.
Oh well. Even if it takes me two or three days to create some kind of order, at least I'll be fully occupied which I suppose is good. No chance of boredom.
Since returning to within my own four walls, it has been somewhat hectic. The phone has hardly stopped ringing for one thing. Then two nurses from Spitex, the home nursing organisation, arrived at 2 o'clock and gathered information for 2 solid hours. Apart from anything else, the stoma was leaking again, so one of the ladies had the dubious pleasure of replacing it - her first ever experience of stoma installation. It seems to be okay at the moment. Before that was finished, another woman arrived with all the equipment for drip feeding. By the time I had been instructed on which medication to take at which times (there are about 10 different medicines) and how to fit all the feeding into a 24-hour day, my head was spinning. It's now late afternoon and the place looks like a tip. There's all the luggage to unpack, plus loads of boxes and containers and lists and leaflets and God knows what else standing or lying all over the place.
Oh well. Even if it takes me two or three days to create some kind of order, at least I'll be fully occupied which I suppose is good. No chance of boredom.
Saturday, 6 November 2010
In limbo
Back in Susenberg which is effectively serving as a hotel more than anything else for the weekend.
The chemotherapy has been much tougher this time. My blood pressure has plummeted to new low levels, my fingers are tingling every time I get out of bed and move around and my hair is falling out as well. I’ll wind up looking like an extremely skinny version of Bruce Willis at this rate!
At least I have a couple of new appointments as target dates. On the 15th November I have to go to the oncologists for a blood test and a chat about my general condition after the latest dose of chemo, and then on 17th November I am scheduled for a PET CT. I’m very much hoping that if all is well, I will obtain a date for the operation so that I have a target to head for.
I imagine I’ll get a psychological boost from being at home next week. At the moment, all I really feel like doing all day long is sleeping. Even if I spend four or five hours asleep during the day, I still sleep well overnight. I feel that I’m just in limbo at the moment, a kind of vacuum. I wish I could see the end of the tunnel. It’s still not in sight.
The chemotherapy has been much tougher this time. My blood pressure has plummeted to new low levels, my fingers are tingling every time I get out of bed and move around and my hair is falling out as well. I’ll wind up looking like an extremely skinny version of Bruce Willis at this rate!
At least I have a couple of new appointments as target dates. On the 15th November I have to go to the oncologists for a blood test and a chat about my general condition after the latest dose of chemo, and then on 17th November I am scheduled for a PET CT. I’m very much hoping that if all is well, I will obtain a date for the operation so that I have a target to head for.
I imagine I’ll get a psychological boost from being at home next week. At the moment, all I really feel like doing all day long is sleeping. Even if I spend four or five hours asleep during the day, I still sleep well overnight. I feel that I’m just in limbo at the moment, a kind of vacuum. I wish I could see the end of the tunnel. It’s still not in sight.
Wednesday, 3 November 2010
Checking out for a couple of days
This is probably my last posting for a couple of days. I have to leave here very early tomorrow morning to get to the hospital, and then I’m unlikely to be online until I return here on Saturday.
Thank you for all the many kind messages and wishes that have come in over this past week or so. All very much appreciated.
I’m still feeling positive and optimistic. Most of all, I’m looking forward to being back in my own four walls on Monday. The home nursing organisation called me this morning to confirm that they will be at my place on Monday afternoon to get everything sorted out. Then I’ll be at home until I’m summoned for the next step in the proceedings. It seems like years since the first operation. Actually, it’s only been just over a month. With any luck, I’m already more than halfway through it all.
Thank you for all the many kind messages and wishes that have come in over this past week or so. All very much appreciated.
I’m still feeling positive and optimistic. Most of all, I’m looking forward to being back in my own four walls on Monday. The home nursing organisation called me this morning to confirm that they will be at my place on Monday afternoon to get everything sorted out. Then I’ll be at home until I’m summoned for the next step in the proceedings. It seems like years since the first operation. Actually, it’s only been just over a month. With any luck, I’m already more than halfway through it all.
Tuesday, 2 November 2010
Musical chairs
The latest news is that I will be leaving most of my stuff here but moving back into the hospital on Thursday morning. On Thursday and overnight until Friday, I’ll have the second cycle of chemotherapy. On the Friday, they’ll be fitting a “port”. Don’t ask me what that is because I haven’t got a clue, but it’s apparently important.
Then, either on the Friday or the Saturday, I will move back to Susenberg for a quiet weekend to pack my things. I will then leave here on Monday morning to go home. The home nursing service is lined up to take care of the dressings etc. for as long as I’m at home. The liquid food will be delivered that same Monday afternoon.
I don’t know how long it will be before I’m called up for the PET CT and then the operation. It could just be two or three days. It could also be two or three weeks. I really don’t know.
Anyway, things are still moving so that’s encouraging.
Then, either on the Friday or the Saturday, I will move back to Susenberg for a quiet weekend to pack my things. I will then leave here on Monday morning to go home. The home nursing service is lined up to take care of the dressings etc. for as long as I’m at home. The liquid food will be delivered that same Monday afternoon.
I don’t know how long it will be before I’m called up for the PET CT and then the operation. It could just be two or three days. It could also be two or three weeks. I really don’t know.
Anyway, things are still moving so that’s encouraging.
Monday, 1 November 2010
A little more progress
A bright, sunny autumn afternoon. After an early start to the day (lazing around in bed beyond 7.30 in the morning isn’t encouraged in this place!), I went through the normal morning performance of giving up a blood sample and having all the checks done to ensure the nurses that I really was still alive. Then I got myself washed and groomed ready for my outing.
Irene arrived a little early and kindly drove me down to the hospital. It’s only about 10 minutes from here. Then I had to wait a while in the cancer polyclinic. The waiting room was packed. It’s only really when you become a cancer victim yourself that you realise how many people suffer from the dread disease. Anyway, as a private patient, I didn’t have to wait long before being received by a lady doctor who wanted to make sure that the status quo was properly understood and documented.
She said that she would coordinate everything with the visceral surgery department and phone me later today with fixed dates for the next cycle of chemotherapy and the PET CT. The chemo will be sometime this week. For that, I will have to check in to the hospital for an overnight stay and come back here to Susenberg the next day. That’s fine. At least things are now moving nicely.
Back at my temporary “home from home”, the electrician turned up and connected me to the clinic’s broadband system, so I am now able to send and receive e-mails and surf the Internet at a reasonable speed. No sooner was he finished than I was summoned downstairs for an electrocardiogram. So yep – things are progressing and I am still hopeful of the second operation taking place within the next two to three weeks.
I’ve never really been what you might call a “big eater”, but since my ability to eat or drink anything has been interrupted, I find myself imagining all the marvellous things I’ll be eating once my ability returns. I’ve even been “designing” club sandwiches, one of them consisting of ham, processed cheese slices, mayonnaise, lettuce, cucumber, tomato slices and a couple of slices of hard-boiled egg, all encased in fresh, white bread.... My mouth waters at the very thought of it...!!! Silly, I know, but it’s all about positive anticipation, so I don’t apologise for it.
On the whole, I’m comfortable, positive, optimistic and upbeat at the moment.
Irene arrived a little early and kindly drove me down to the hospital. It’s only about 10 minutes from here. Then I had to wait a while in the cancer polyclinic. The waiting room was packed. It’s only really when you become a cancer victim yourself that you realise how many people suffer from the dread disease. Anyway, as a private patient, I didn’t have to wait long before being received by a lady doctor who wanted to make sure that the status quo was properly understood and documented.
She said that she would coordinate everything with the visceral surgery department and phone me later today with fixed dates for the next cycle of chemotherapy and the PET CT. The chemo will be sometime this week. For that, I will have to check in to the hospital for an overnight stay and come back here to Susenberg the next day. That’s fine. At least things are now moving nicely.
Back at my temporary “home from home”, the electrician turned up and connected me to the clinic’s broadband system, so I am now able to send and receive e-mails and surf the Internet at a reasonable speed. No sooner was he finished than I was summoned downstairs for an electrocardiogram. So yep – things are progressing and I am still hopeful of the second operation taking place within the next two to three weeks.
I’ve never really been what you might call a “big eater”, but since my ability to eat or drink anything has been interrupted, I find myself imagining all the marvellous things I’ll be eating once my ability returns. I’ve even been “designing” club sandwiches, one of them consisting of ham, processed cheese slices, mayonnaise, lettuce, cucumber, tomato slices and a couple of slices of hard-boiled egg, all encased in fresh, white bread.... My mouth waters at the very thought of it...!!! Silly, I know, but it’s all about positive anticipation, so I don’t apologise for it.
On the whole, I’m comfortable, positive, optimistic and upbeat at the moment.
Sunday, 31 October 2010
Installed in Susenberg
Sunday morning.
I was transferred from Mammern to the Susenberg Clinic yesterday morning. The trip took an hour and I arrived in Susenberg just before 11 o’clock. What a difference! This place is much more compact but very much nicer. I no longer feel that I’m in God’s waiting room, and even the distant sound of Zurich traffic is a welcome change from the absolute silence of Mammern.
Danny dropped by late afternoon to bring me some fresh clothes and my post. My grandson Dean came along too and enjoyed collecting conkers out in the gardens. It took me a while to get my bearings and figure out what was what in this new place. Among other things, I discovered that trolley bus number 33, which turns around very close to my home, stops almost outside the door of the clinic. That’s great because I’ll probably be able to go AWOL from time to time, and it will make things much easier for Linda the next time she comes over.
Today looks like a quiet Sunday with nothing much on the programme. Tomorrow at 11 a.m. I have to be at the hospital for a discussion with the oncologists about the next cycle of chemotherapy.
The psychological effect of moving here has been amazing. Suddenly, I’m much more positive and active. My decision, which didn’t go down too well in Mammern, was unquestionably the right one.
I was transferred from Mammern to the Susenberg Clinic yesterday morning. The trip took an hour and I arrived in Susenberg just before 11 o’clock. What a difference! This place is much more compact but very much nicer. I no longer feel that I’m in God’s waiting room, and even the distant sound of Zurich traffic is a welcome change from the absolute silence of Mammern.
Danny dropped by late afternoon to bring me some fresh clothes and my post. My grandson Dean came along too and enjoyed collecting conkers out in the gardens. It took me a while to get my bearings and figure out what was what in this new place. Among other things, I discovered that trolley bus number 33, which turns around very close to my home, stops almost outside the door of the clinic. That’s great because I’ll probably be able to go AWOL from time to time, and it will make things much easier for Linda the next time she comes over.
Today looks like a quiet Sunday with nothing much on the programme. Tomorrow at 11 a.m. I have to be at the hospital for a discussion with the oncologists about the next cycle of chemotherapy.
The psychological effect of moving here has been amazing. Suddenly, I’m much more positive and active. My decision, which didn’t go down too well in Mammern, was unquestionably the right one.
Friday, 29 October 2010
Things are beginning to move
I spent a large part of the evening packing, only to be told this morning that my move to the Susenberg Clinic in Zurich has now been postponed until tomorrow (Saturday). Oh well, I guess I'll survive another 24 hours without going completely crazy.
There was another telephone call this morning. The oncology department at the hospital want to see me there on Monday morning at 11 o'clock to discuss the second cycle of chemotherapy. That's VERY good news because it means that things are finally beginning to move. With any luck, I should have a fixed date for the chemo and then they can start thinking about preparations for the second and most critical operation. I'm still hopeful of being dealt with and released before Christmas.
It's amazing how much luggage has accumulated in the past month. They'll think I'm moving in permanently when I finally get to Susenberg! Danny will be bringing me some fresh clothes and other stuff tomorrow and then he can take a couple of bags full of stuff I don't need back to the flat. I'll get there eventually - I hope.
Today is a bright, mild day and I don't have any appointments so I expect I'll spend a bit of the afternoon in the park.
There was another telephone call this morning. The oncology department at the hospital want to see me there on Monday morning at 11 o'clock to discuss the second cycle of chemotherapy. That's VERY good news because it means that things are finally beginning to move. With any luck, I should have a fixed date for the chemo and then they can start thinking about preparations for the second and most critical operation. I'm still hopeful of being dealt with and released before Christmas.
It's amazing how much luggage has accumulated in the past month. They'll think I'm moving in permanently when I finally get to Susenberg! Danny will be bringing me some fresh clothes and other stuff tomorrow and then he can take a couple of bags full of stuff I don't need back to the flat. I'll get there eventually - I hope.
Today is a bright, mild day and I don't have any appointments so I expect I'll spend a bit of the afternoon in the park.
Wednesday, 27 October 2010
Another change of plan
Thank you Mum & Dad, Sheila, Pete, Bea and all for your e-mails. Good to know that as isolated as I am in this place, at least there’s some chatty news coming in from civilisation.
The latest here is that I’m now being lined up to be shifted to another private clinic, this time in the city of Zurich. The advantage of that is that I’ll be able to have the dressings replaced and the artificial nourishment dispensed while I’m stationary. Since it appears that the second round of chemotherapy, the PET CT and the other tests are likely to be handled on an out-patients’ basis, it will be easier to get to and from the hospital from a city-based clinic than it would be from here or from home. The downside is that the University Hospital thinks I am going home from here, and whenever they make a date for me, they always inform me by post to my home address. Somehow, I have to get the message to the oncology and surgery departments that they must tell me by phone when they want me to be anywhere because I obviously can’t collect my post.
All highly complicated, and I really didn’t expect any of this additional complication. I thought it was a matter of fact that I would be transported directly back from here to the hospital. At least then, they wouldn’t have been able to forget me. As it is, this whole story could mean that that the chemo and all the rest of it will be delayed until they feel they’ve got a free slot for me as an out-patient.
There are other annoyances. I am practically out of clean clothes – everything has been stained this past month. And I badly need a haircut...!!! Nothing I can do about either problem until I am out of Mammern. The laundry service takes up to a week and I don’t have that much time left. Oh well, no doubt it will all sort itself out in the end.
The latest here is that I’m now being lined up to be shifted to another private clinic, this time in the city of Zurich. The advantage of that is that I’ll be able to have the dressings replaced and the artificial nourishment dispensed while I’m stationary. Since it appears that the second round of chemotherapy, the PET CT and the other tests are likely to be handled on an out-patients’ basis, it will be easier to get to and from the hospital from a city-based clinic than it would be from here or from home. The downside is that the University Hospital thinks I am going home from here, and whenever they make a date for me, they always inform me by post to my home address. Somehow, I have to get the message to the oncology and surgery departments that they must tell me by phone when they want me to be anywhere because I obviously can’t collect my post.
All highly complicated, and I really didn’t expect any of this additional complication. I thought it was a matter of fact that I would be transported directly back from here to the hospital. At least then, they wouldn’t have been able to forget me. As it is, this whole story could mean that that the chemo and all the rest of it will be delayed until they feel they’ve got a free slot for me as an out-patient.
There are other annoyances. I am practically out of clean clothes – everything has been stained this past month. And I badly need a haircut...!!! Nothing I can do about either problem until I am out of Mammern. The laundry service takes up to a week and I don’t have that much time left. Oh well, no doubt it will all sort itself out in the end.
Tuesday, 26 October 2010
Back to "normality"
Linda left here late this afternoon and will be back in England late evening.
It was great to have her here for a few days and she certainly managed to cheer me up to a certain extent. Unfortunately, what I'm noticing at the moment is that there are heavy fluctuations in my mood. We did have a few laughs during her stay, but then there were other times - like most of today - where I just didn't feel like laughing or even talking. All I wanted to do was sleep. Once one of those lethargic moods gets hold of me, there's nothing much I can do about it.
The diarrhoea problem was tackled by reducing the amount of "tube feed" and the speed of the infusion. That has done the trick, but I'm now getting only about a third of the calories my body needs, so I'm permanently tired. I've stopped most of the physiotherapy because I simply don't have the energy for it.
In retrospect, coming here to Mammern at all has been a waste of time. The stomach problem, plus all the aggravation with the stoma bag out of my throat which leaks and makes an awful mess time and time again, have taken up most of my attention since I've been here. There has been very little real rest (there are people marching in and out of my room all the time) and it has been far too cold to spend much time out in the park. I'm not at all convinced by the medical care. If I had stayed at the hospital, the diarrhoea problem would have been dealt with much more quickly and professionally and at least the nurses there know how to install a stoma so that it doesn't explode in the middle of the night. Here, the entire staff just seems to be over-extended. They're all very nice, but they're out of their depth. Half the time, they seem to be phoning the people at the hospital to ask what to do next.
The latest example was this morning when the doctor said there was nothing in my file to indicate that I should be transferred directly back to the hospital at the end of this week. I could go straight home. I told him that was ridiculous. How am I supposed to deal with the stoma and the nourishment and all the rest of it all on my own? That, apparently, hadn't occurred to him. Anyway, I'm now waiting to hear whether I'll be moved back to Zurich on Friday or Saturday. From my own point of view, the sooner the better.
Oh well, I'm back on my own again. No Linda to keep me from brooding over the situation. I think once I get back to Zurich, I'll feel more optimistic than I do right now. If nothing else, I'll at least feel that I'm a lot closer to home.
It was great to have her here for a few days and she certainly managed to cheer me up to a certain extent. Unfortunately, what I'm noticing at the moment is that there are heavy fluctuations in my mood. We did have a few laughs during her stay, but then there were other times - like most of today - where I just didn't feel like laughing or even talking. All I wanted to do was sleep. Once one of those lethargic moods gets hold of me, there's nothing much I can do about it.
The diarrhoea problem was tackled by reducing the amount of "tube feed" and the speed of the infusion. That has done the trick, but I'm now getting only about a third of the calories my body needs, so I'm permanently tired. I've stopped most of the physiotherapy because I simply don't have the energy for it.
In retrospect, coming here to Mammern at all has been a waste of time. The stomach problem, plus all the aggravation with the stoma bag out of my throat which leaks and makes an awful mess time and time again, have taken up most of my attention since I've been here. There has been very little real rest (there are people marching in and out of my room all the time) and it has been far too cold to spend much time out in the park. I'm not at all convinced by the medical care. If I had stayed at the hospital, the diarrhoea problem would have been dealt with much more quickly and professionally and at least the nurses there know how to install a stoma so that it doesn't explode in the middle of the night. Here, the entire staff just seems to be over-extended. They're all very nice, but they're out of their depth. Half the time, they seem to be phoning the people at the hospital to ask what to do next.
The latest example was this morning when the doctor said there was nothing in my file to indicate that I should be transferred directly back to the hospital at the end of this week. I could go straight home. I told him that was ridiculous. How am I supposed to deal with the stoma and the nourishment and all the rest of it all on my own? That, apparently, hadn't occurred to him. Anyway, I'm now waiting to hear whether I'll be moved back to Zurich on Friday or Saturday. From my own point of view, the sooner the better.
Oh well, I'm back on my own again. No Linda to keep me from brooding over the situation. I think once I get back to Zurich, I'll feel more optimistic than I do right now. If nothing else, I'll at least feel that I'm a lot closer to home.
Sunday, 24 October 2010
The cavalry has arrived
Linda arrived here yesterday afternoon. She is as bubbly and upbeat as always. I'm very thankful that she came all the way here because the past couple of days were pretty horrific.
The diarrhoea problem reached its peak on Friday. From 9 o'clock on Friday morning until 9 o'clock on Saturday morning, I had to go to the loo no fewer than 41 times! The doctor here said he had seen some bad cases of tube-food being rejected by the body, but mine was the worst he had ever seen. They stopped the nourishment altogether so that I could recover, being fed merely on water with glucose. It is only now, on Sunday morning, that the attack has finally stopped. We will have to see what happens from now. The plan is to resume tube feeding from tomorrow. If I have more trouble, there is a strong possibility that I will be transferred back to the hospital earlier than planned.
If all goes well, I expect to be staying here until Saturday.
Anyway, it's great to have Linda's company. If the weather improves, we might be able to take a stroll in the park later on. At the moment, it's cold and wet.
The diarrhoea problem reached its peak on Friday. From 9 o'clock on Friday morning until 9 o'clock on Saturday morning, I had to go to the loo no fewer than 41 times! The doctor here said he had seen some bad cases of tube-food being rejected by the body, but mine was the worst he had ever seen. They stopped the nourishment altogether so that I could recover, being fed merely on water with glucose. It is only now, on Sunday morning, that the attack has finally stopped. We will have to see what happens from now. The plan is to resume tube feeding from tomorrow. If I have more trouble, there is a strong possibility that I will be transferred back to the hospital earlier than planned.
If all goes well, I expect to be staying here until Saturday.
Anyway, it's great to have Linda's company. If the weather improves, we might be able to take a stroll in the park later on. At the moment, it's cold and wet.
Thursday, 21 October 2010
Beginning to feel depressed
Thank you for all the many e-mails, folks. Forgive me that I’m unable to answer them all individually. That would almost be a full-time job. Nevertheless, your messages are always much appreciated.
Thursday afternoon, and if I’m perfectly honest, I’ve never felt quite so ill and lifeless.
It seems that as beautiful as it is here at the clinic, there are limitations to what the medical staff can do compared with their colleagues at the hospital. I am still suffering from acute diarrhoea – I’m scared of being more than 5 yards away from the loo. Whatever nourishment they pump into me, practically none of it gets processed by the body – it just gets swept out again in no time at all. The doctor in charge of my case here is fully aware of the problem and so are all the nurses, but no-one has yet come up with a solution.
That obviously influences everything else. I have quite a heavy programme every day of breathing exercises and physiotherapy as well as speech training. This afternoon, I was on a training bike in the gym for 10 minutes, 8 of which were uncomfortable because I needed to go to the loo again. Being short of nourishment, I’m losing weight at alarming speed and have absolutely no energy at all. I could just stay in bed and sleep most of the time.
The nurses are all doing their best, I suppose, but I still resent the complete lack of privacy. They just barge through the door whenever they feel like it, and that’s numerous times throughout the day and night.
Isn’t it strange how all female nurses have a voice like Tinkerbell? All sweetness and light, but I often wish they’d just shut up. I mean yesterday, three of them were dealing with my other major problem – the stoma which leaks almost every time it’s replaced. They were all jabbering, not so much to each other but to themselves, or possibly me. I honestly don’t need a running commentary every time my medication is switched or the water supply (1.4 litres a day) is hung on the frame. They should just get on with it, but that doesn’t seem to be the style here.
In summary, I’m extremely down about the whole thing. Had I known what was going to be entailed, I’m really not sure that I would still have opted for the operation in the first place. I expected everything to be sorted out by now. The thought that there’s probably another month to go before the second operation takes place and I’m in intensive care doesn’t bear thinking about. I have always loathed having people fuss around me. Here, I’ve got no choice. They make me feel like a 90-year-old and it’s really getting to me now.
Thursday afternoon, and if I’m perfectly honest, I’ve never felt quite so ill and lifeless.
It seems that as beautiful as it is here at the clinic, there are limitations to what the medical staff can do compared with their colleagues at the hospital. I am still suffering from acute diarrhoea – I’m scared of being more than 5 yards away from the loo. Whatever nourishment they pump into me, practically none of it gets processed by the body – it just gets swept out again in no time at all. The doctor in charge of my case here is fully aware of the problem and so are all the nurses, but no-one has yet come up with a solution.
That obviously influences everything else. I have quite a heavy programme every day of breathing exercises and physiotherapy as well as speech training. This afternoon, I was on a training bike in the gym for 10 minutes, 8 of which were uncomfortable because I needed to go to the loo again. Being short of nourishment, I’m losing weight at alarming speed and have absolutely no energy at all. I could just stay in bed and sleep most of the time.
The nurses are all doing their best, I suppose, but I still resent the complete lack of privacy. They just barge through the door whenever they feel like it, and that’s numerous times throughout the day and night.
Isn’t it strange how all female nurses have a voice like Tinkerbell? All sweetness and light, but I often wish they’d just shut up. I mean yesterday, three of them were dealing with my other major problem – the stoma which leaks almost every time it’s replaced. They were all jabbering, not so much to each other but to themselves, or possibly me. I honestly don’t need a running commentary every time my medication is switched or the water supply (1.4 litres a day) is hung on the frame. They should just get on with it, but that doesn’t seem to be the style here.
In summary, I’m extremely down about the whole thing. Had I known what was going to be entailed, I’m really not sure that I would still have opted for the operation in the first place. I expected everything to be sorted out by now. The thought that there’s probably another month to go before the second operation takes place and I’m in intensive care doesn’t bear thinking about. I have always loathed having people fuss around me. Here, I’ve got no choice. They make me feel like a 90-year-old and it’s really getting to me now.
Tuesday, 19 October 2010
In Mammern
Well, as you can see I’m back online after a longish break. Time to catch up with the latest events.
I left Zurich with a Mercedes minibus for the disabled at one o’clock yesterday (Monday) and arrived here in Mammern 45 minutes later.
The first impression was of luxury all around. Modern, well renovated and tasteful, and my room is the biggest I’ve ever had at any hotel anywhere. It even offers a chaise longue, something I haven’t seen in donkey’s years. There’s a big, flat-screen TV which would be nice if I had time to watch it, but that’s where the frustration has already started.
I was under the mistaken impression that clinics like this one serve to provide rest, relaxation and gentle therapy to overcome a sickness or an operation. Just goes to show how wrong you can be. Within half an hour of arriving, I was ushered down to a doctor who gave me an entrance check-up. Everything was okay, except for answering the same old questions all over again. The chemotherapy and the trip had taken it out of me somewhat, so once I’d finished with the doctor I wanted to lie down for a couple of hours. No such luck. There was an endless procession of people flooding into and out of my room every two minutes until well into the evening. I won’t bother to list all their functions, but they all wanted something or other from me. I eventually escaped out in the park for half an hour just to be away from the chaos. When I got back, it continued. One individual asked me whether I wished to dine in my room or the dining room. I said I wouldn’t be dining anywhere for reasons she would already know if she bothered to read the notes. The stoma leaked, so a nurse of New Zealand origins set to fixing it at 10 o’clock. She had vast problems because the stoma material used by the hospital and what’s available here in Mammern are two different things that don’t match. So that was another 30 minutes or so of irritation. She eventually left and I figured I must surely be left in peace now for the night, but no. At around eleven o’clock, the new shift of nurses – three of them on this floor – marched in to introduce themselves. They knock on the door and open it simultaneously, so you just have to make sure that you’re not caught with your pants down, so to speak.
During the night, one of this new trio came in four or five times to check on the stoma. She doesn’t have any qualms about banging doors or switching lights on full power while you’re desperately trying to sleep. So although I managed to sleep to an extent, it was anything but a peaceful night.
The new day started at 7.30 with someone crashing in to take blood samples. Then two more people, then the cleaner, then some of the dressings were replaced.... I’m sitting here with sore eyes because I’m still so tired, but the procession just goes on and on. The physiotherapist is due here at 11.30. God knows what she expects from me, but she won’t get much. I don’t feel up to any physical activity whatsoever.
I expect things will settle down eventually and some kind of acceptable routine will fall into place. My first look at the private park was promising – it’s right on the bank of Lake Constance and is lovely. Such a pity that the weather is bitterly cold. I would spend more time out there to escape the nurses if it were warmer.
That’s about it for now. At least I’ve managed to get this written without interruption.
I left Zurich with a Mercedes minibus for the disabled at one o’clock yesterday (Monday) and arrived here in Mammern 45 minutes later.
The first impression was of luxury all around. Modern, well renovated and tasteful, and my room is the biggest I’ve ever had at any hotel anywhere. It even offers a chaise longue, something I haven’t seen in donkey’s years. There’s a big, flat-screen TV which would be nice if I had time to watch it, but that’s where the frustration has already started.
I was under the mistaken impression that clinics like this one serve to provide rest, relaxation and gentle therapy to overcome a sickness or an operation. Just goes to show how wrong you can be. Within half an hour of arriving, I was ushered down to a doctor who gave me an entrance check-up. Everything was okay, except for answering the same old questions all over again. The chemotherapy and the trip had taken it out of me somewhat, so once I’d finished with the doctor I wanted to lie down for a couple of hours. No such luck. There was an endless procession of people flooding into and out of my room every two minutes until well into the evening. I won’t bother to list all their functions, but they all wanted something or other from me. I eventually escaped out in the park for half an hour just to be away from the chaos. When I got back, it continued. One individual asked me whether I wished to dine in my room or the dining room. I said I wouldn’t be dining anywhere for reasons she would already know if she bothered to read the notes. The stoma leaked, so a nurse of New Zealand origins set to fixing it at 10 o’clock. She had vast problems because the stoma material used by the hospital and what’s available here in Mammern are two different things that don’t match. So that was another 30 minutes or so of irritation. She eventually left and I figured I must surely be left in peace now for the night, but no. At around eleven o’clock, the new shift of nurses – three of them on this floor – marched in to introduce themselves. They knock on the door and open it simultaneously, so you just have to make sure that you’re not caught with your pants down, so to speak.
During the night, one of this new trio came in four or five times to check on the stoma. She doesn’t have any qualms about banging doors or switching lights on full power while you’re desperately trying to sleep. So although I managed to sleep to an extent, it was anything but a peaceful night.
The new day started at 7.30 with someone crashing in to take blood samples. Then two more people, then the cleaner, then some of the dressings were replaced.... I’m sitting here with sore eyes because I’m still so tired, but the procession just goes on and on. The physiotherapist is due here at 11.30. God knows what she expects from me, but she won’t get much. I don’t feel up to any physical activity whatsoever.
I expect things will settle down eventually and some kind of acceptable routine will fall into place. My first look at the private park was promising – it’s right on the bank of Lake Constance and is lovely. Such a pity that the weather is bitterly cold. I would spend more time out there to escape the nurses if it were warmer.
That’s about it for now. At least I’ve managed to get this written without interruption.
Saturday, 16 October 2010
Last weekend in Zurich for a while
The chemotherapy began yesterday evening and will end any time now. Actually, the third bottle ought to be empty by now, but there’s still some left in it.
I’ve been given 2 hours off for good behaviour – from 4 until 6 p.m. tomorrow (Sunday). I’ve arranged for a friend to pick me up and drive me home to switch some laundry and collect a few bits and pieces for Mammern, then I’ll be driven back to spend the night here in hospital. The next step will be off to Mammern on Monday morning.
I’m really looking forward to a complete change of scenery. I mean everyone here in Zurich has been great to me these past 3 weeks so I can’t complain at all. But three weeks in the same room hasn’t been particularly motivating. I’ve been able to get out into the hospital’s lovely park from time to time, although even that has fallen away due to a drastic change in the weather. So now it’s time for a different room, different surroundings, different people and the challenge of different treatment to get my strength up again ahead of the second and (hopefully) final operation.
I know I haven’t been posting on CancerChat just recently but I am following your stories and blogs with interest.
Just a note for David – if you’re having problems with the text box (I’m not crazy about it either), the simplest solution is to write what you want to write in a text editor (I use MS-WORD) and then copy-paste into the text box. It doesn’t like images, but it will generally take over text from WORD without a problem.
Kindest regards to you all
TonyB
I’ve been given 2 hours off for good behaviour – from 4 until 6 p.m. tomorrow (Sunday). I’ve arranged for a friend to pick me up and drive me home to switch some laundry and collect a few bits and pieces for Mammern, then I’ll be driven back to spend the night here in hospital. The next step will be off to Mammern on Monday morning.
I’m really looking forward to a complete change of scenery. I mean everyone here in Zurich has been great to me these past 3 weeks so I can’t complain at all. But three weeks in the same room hasn’t been particularly motivating. I’ve been able to get out into the hospital’s lovely park from time to time, although even that has fallen away due to a drastic change in the weather. So now it’s time for a different room, different surroundings, different people and the challenge of different treatment to get my strength up again ahead of the second and (hopefully) final operation.
I know I haven’t been posting on CancerChat just recently but I am following your stories and blogs with interest.
Just a note for David – if you’re having problems with the text box (I’m not crazy about it either), the simplest solution is to write what you want to write in a text editor (I use MS-WORD) and then copy-paste into the text box. It doesn’t like images, but it will generally take over text from WORD without a problem.
Kindest regards to you all
TonyB
Friday, 15 October 2010
Moving house on Monday
Friday evening
The chemotherapy began this evening and will go on for 22 hours at a stretch. If there are going to be any side-effects, I imagine they will only show themselves tomorrow or on Sunday.
Then, bright and early on Monday morning, I’ll be transported out to Mammern for my fortnight of convalescence.
The other good news of the day was that the Professor announced the findings from the CT. According to that, there are no indications of cancer in any of the body now. The chemotherapy is simply a precaution, just in case there are still any rogue cells floating about.
Still quite a long way to go, but everything is looking positive now.
The chemotherapy began this evening and will go on for 22 hours at a stretch. If there are going to be any side-effects, I imagine they will only show themselves tomorrow or on Sunday.
Then, bright and early on Monday morning, I’ll be transported out to Mammern for my fortnight of convalescence.
The other good news of the day was that the Professor announced the findings from the CT. According to that, there are no indications of cancer in any of the body now. The chemotherapy is simply a precaution, just in case there are still any rogue cells floating about.
Still quite a long way to go, but everything is looking positive now.
Thursday, 14 October 2010
Some very good news
Who says that pestering doctors doesn’t work?
This morning, I was told that my treatment is going to be sharply accelerated. I am going through a cycle of chemotherapy this coming weekend and then being transported off to the beautiful clinic Castle Mammern for rehab (www.klinik-schloss-mammern.ch). I will be there for two weeks, then back here to Zurich again for a second and final cycle of chemo. Assuming that everything goes well, the second operation to replace the oesophagus should be able to take place in November. The original plan was for that operation to be scheduled for January. So with any luck, my treatment should be over two months earlier than originally foreseen and I should be able to be back home again in good time for Christmas.
Everything is moving ahead very quickly now. It’s partly because I’ve been actively fighting to regain my strength, but it’s also because I’ve been pestering the doctors to get things sorted out more quickly. Still quite a lot of intensive work ahead of me. I don’t know whether the e-mail system will operate normally from Mammern, but I’ll hopefully be able to keep up the blog once I’m there and installed.
This morning, I was told that my treatment is going to be sharply accelerated. I am going through a cycle of chemotherapy this coming weekend and then being transported off to the beautiful clinic Castle Mammern for rehab (www.klinik-schloss-mammern.ch). I will be there for two weeks, then back here to Zurich again for a second and final cycle of chemo. Assuming that everything goes well, the second operation to replace the oesophagus should be able to take place in November. The original plan was for that operation to be scheduled for January. So with any luck, my treatment should be over two months earlier than originally foreseen and I should be able to be back home again in good time for Christmas.
Everything is moving ahead very quickly now. It’s partly because I’ve been actively fighting to regain my strength, but it’s also because I’ve been pestering the doctors to get things sorted out more quickly. Still quite a lot of intensive work ahead of me. I don’t know whether the e-mail system will operate normally from Mammern, but I’ll hopefully be able to keep up the blog once I’m there and installed.
Wednesday, 13 October 2010
On a roller-coaster
Things are becoming increasingly difficult – more in psychological than physical terms. This week has once again shown that the whole thing is like riding a roller-coaster.
On Monday, as I reported, I asked the Professor about my voice. He sort of brushed over the subject and said it could take up to a year to normalise. That was that. But it must have bothered him all the same because on Monday afternoon, I was transported off to the Ear, Nose & Throat department to have my vocal cords looked at. It was quite an enjoyable visit, actually, because EN&T are in a remote part of the hospital and to get to it, you are taken in a wheelchair down into the labyrinth of tunnels underneath the hospital. Down there, they load you onto a small electrical van thing – a bit like a milk-float – and then you’re driven through the labyrinth for about 10 minutes. It’s almost like having your own little private tube train!
Anyway, the two doctors at EN&T stuck a camera up my nose and down my throat and showed me the situation on the computer screen. One of the nerves that opens and closes the vocal cord on the right has been numbed through the operation. Instead of the two cords closing like lift doors that meet in the middle, only one of them is reacting properly, while the other “door” only goes part of the way. That’s why I only have about a quarter of a voice. They said it’s not serious and will correct itself. There are exercises I can do to make the numb nerve do its job again more quickly. A specialist for that is due to visit me at 12 noon today. Anyway, it looks as though that will all be okay.
Also on Monday, I was told that my blood tests looked much better and everything was beginning to get back to normal. They would change the liquid nourishment, which they did that evening.
So there I was, feeling quite positive about it all when, all of a sudden, WHAM!
My body took an instinct dislike to the new nourishment and I was clobbered with massive diarrhoea all night. At the same time, I was producing far too much frothy saliva which was collecting in the drainage bag but to such an extent that the bag kept on bursting. There was mess everywhere. The only way to deal with it is to keep on changing the dressings, but my throat is now so sore from all the dressings that every new one hurts like hell.
By yesterday morning, I looked and felt like a beached whale. They quickly decided to change my food again, but of course there was no immediate reaction. I was seriously weakened again and, after hearing the good stuff on Monday, was now deeply depressed about all this new trouble. I felt I didn’t want to do anything or see anyone or communicate at all, not even with my loved ones. I just wanted to go to sleep for about a fortnight and wake up to find that it had all just been a bad nightmare.
Andy visited me late afternoon. Even with him, I couldn’t raise the energy to sit up and talk. I was only partly conscious. It was a dreadful feeling.
Anyway, I remained like that until well into the evening, by which time at least the diarrhoea had stopped. I half-heartedly watched some football on the miniature TV and then fell into a restless sleep.
This morning, I feel much better. One of the assistant doctors dropped by and agreed with me that things were becoming psychologically difficult and it was time to come up with some fixed plans and dates so that I had a concrete map of what was going to happen next. They’re going to try to get a clear plan of action sorted out today. Whether they do or not remains to be seen.
I hope I can get through today without any further mishaps.
On Monday, as I reported, I asked the Professor about my voice. He sort of brushed over the subject and said it could take up to a year to normalise. That was that. But it must have bothered him all the same because on Monday afternoon, I was transported off to the Ear, Nose & Throat department to have my vocal cords looked at. It was quite an enjoyable visit, actually, because EN&T are in a remote part of the hospital and to get to it, you are taken in a wheelchair down into the labyrinth of tunnels underneath the hospital. Down there, they load you onto a small electrical van thing – a bit like a milk-float – and then you’re driven through the labyrinth for about 10 minutes. It’s almost like having your own little private tube train!
Anyway, the two doctors at EN&T stuck a camera up my nose and down my throat and showed me the situation on the computer screen. One of the nerves that opens and closes the vocal cord on the right has been numbed through the operation. Instead of the two cords closing like lift doors that meet in the middle, only one of them is reacting properly, while the other “door” only goes part of the way. That’s why I only have about a quarter of a voice. They said it’s not serious and will correct itself. There are exercises I can do to make the numb nerve do its job again more quickly. A specialist for that is due to visit me at 12 noon today. Anyway, it looks as though that will all be okay.
Also on Monday, I was told that my blood tests looked much better and everything was beginning to get back to normal. They would change the liquid nourishment, which they did that evening.
So there I was, feeling quite positive about it all when, all of a sudden, WHAM!
My body took an instinct dislike to the new nourishment and I was clobbered with massive diarrhoea all night. At the same time, I was producing far too much frothy saliva which was collecting in the drainage bag but to such an extent that the bag kept on bursting. There was mess everywhere. The only way to deal with it is to keep on changing the dressings, but my throat is now so sore from all the dressings that every new one hurts like hell.
By yesterday morning, I looked and felt like a beached whale. They quickly decided to change my food again, but of course there was no immediate reaction. I was seriously weakened again and, after hearing the good stuff on Monday, was now deeply depressed about all this new trouble. I felt I didn’t want to do anything or see anyone or communicate at all, not even with my loved ones. I just wanted to go to sleep for about a fortnight and wake up to find that it had all just been a bad nightmare.
Andy visited me late afternoon. Even with him, I couldn’t raise the energy to sit up and talk. I was only partly conscious. It was a dreadful feeling.
Anyway, I remained like that until well into the evening, by which time at least the diarrhoea had stopped. I half-heartedly watched some football on the miniature TV and then fell into a restless sleep.
This morning, I feel much better. One of the assistant doctors dropped by and agreed with me that things were becoming psychologically difficult and it was time to come up with some fixed plans and dates so that I had a concrete map of what was going to happen next. They’re going to try to get a clear plan of action sorted out today. Whether they do or not remains to be seen.
I hope I can get through today without any further mishaps.
Monday, 11 October 2010
Mother Nature will not be hurried
At this time of the afternoon (2.15) two weeks ago, I was on the operating table. It seems like months ago now.
Things are now slightly in limbo – a sort of pause in the proceedings to get my nourishment balanced out and monitor how things in general are settling down. I had to go for a computer tomography this afternoon to check on the thorax and the throat but – most of all – to take a close look at the left lung. The results should be out by Wednesday or Thursday, at which time yet another Professor – name of Knuth (pronounced ‘Knoot’) will become involved. He’s in charge of oncology and will be here to decide on the timing and structure of the chemotherapy. It’s possible (though I’m not overly optimistic) that I could be let out of here by next weekend. I certainly hope so. Whether it’s to go home and then go on ambulatory chemo for six weeks or to go to Mammern for convalescence, it will at least be a change of scenery.
That theme got me thinking on Saturday. You hear about people being sentenced to prison for 3 months and you think that’s a really ridiculous sentence, which I suppose it is in some cases. But 3 months of being cooped up in the same cell, considerably smaller than the room I’ve got here, must be pretty awful all the same. I’ve only been here for a fortnight, with freedom to stay in my room or venture out into the grounds whenever I feel like it, yet it seems like some kind of cruel punishment.
So now it’s just a matter of waiting for things to happen. I’m not bored at all, but I’m very impatient. Time just seems to be dragging.
Things are now slightly in limbo – a sort of pause in the proceedings to get my nourishment balanced out and monitor how things in general are settling down. I had to go for a computer tomography this afternoon to check on the thorax and the throat but – most of all – to take a close look at the left lung. The results should be out by Wednesday or Thursday, at which time yet another Professor – name of Knuth (pronounced ‘Knoot’) will become involved. He’s in charge of oncology and will be here to decide on the timing and structure of the chemotherapy. It’s possible (though I’m not overly optimistic) that I could be let out of here by next weekend. I certainly hope so. Whether it’s to go home and then go on ambulatory chemo for six weeks or to go to Mammern for convalescence, it will at least be a change of scenery.
That theme got me thinking on Saturday. You hear about people being sentenced to prison for 3 months and you think that’s a really ridiculous sentence, which I suppose it is in some cases. But 3 months of being cooped up in the same cell, considerably smaller than the room I’ve got here, must be pretty awful all the same. I’ve only been here for a fortnight, with freedom to stay in my room or venture out into the grounds whenever I feel like it, yet it seems like some kind of cruel punishment.
So now it’s just a matter of waiting for things to happen. I’m not bored at all, but I’m very impatient. Time just seems to be dragging.
Sunday, 10 October 2010
Ups and downs
It is amazing how quickly things can change in a single day. Yesterday (Saturday) morning, I went down to the park for my usual walk and very soon wished that I hadn’t. On the way back to my room, I almost fainted and had to lean against a wall for a while to recover. From then on, for the rest of the day, I felt as weak as a kitten. Every single movement, no matter how small, needed a supreme effort. I couldn’t sit straight to use my computer. Going to the toilet was a major challenge.
The reason for all this weakness was clear enough. The hospital hadn’t fed me all day on Friday nor on Saturday, the reason being that I hadn’t been to the loo the normal way since before my operation. That, in turn, had caused an internal infection which was being treated with antibiotics. But the theory was that until I managed to clear myself out properly, there would be no further food. All the laxatives they were pumping into me were doing no good at all.
When the Professor came round for his morning visit, he could see how rough I was feeling. He then decided to have the throat tube, which had only been removed last week, put back in again so that I could be fed through that, and to increase the dosage of laxatives.
Being a Saturday, the operating theatres were busy and understaffed and replacing the throat tube couldn’t be done until the evening. The stronger laxatives were taken at one o’clock. By the time Danny arrived with Dean at about 5 o’clock, they still hadn’t made any difference.
At 8.15 yesterday evening, the dam broke. After 13 full days, I finally had a decent clear-out.
At 9 p.m. they wheeled me down to the operating theatre to have the throat tube back in. That painful process lasted until 10.15. I was fed overnight and woke up feeling considerably better this morning.
It is now Sunday lunchtime (well, for those people who can eat!) and I’m feeling relatively well. The Professor dropped by and I managed to get him to answer a few questions, which is quite an achievement:
The dreadful accumulation of foam in the throat, mainly overnight, and the accompanying cough, could last for another 2 months. It could take my voice up to a full year to recover fully.
Still, every day that goes by is another day closer to being done with all this aggravation and disruption.
The reason for all this weakness was clear enough. The hospital hadn’t fed me all day on Friday nor on Saturday, the reason being that I hadn’t been to the loo the normal way since before my operation. That, in turn, had caused an internal infection which was being treated with antibiotics. But the theory was that until I managed to clear myself out properly, there would be no further food. All the laxatives they were pumping into me were doing no good at all.
When the Professor came round for his morning visit, he could see how rough I was feeling. He then decided to have the throat tube, which had only been removed last week, put back in again so that I could be fed through that, and to increase the dosage of laxatives.
Being a Saturday, the operating theatres were busy and understaffed and replacing the throat tube couldn’t be done until the evening. The stronger laxatives were taken at one o’clock. By the time Danny arrived with Dean at about 5 o’clock, they still hadn’t made any difference.
At 8.15 yesterday evening, the dam broke. After 13 full days, I finally had a decent clear-out.
At 9 p.m. they wheeled me down to the operating theatre to have the throat tube back in. That painful process lasted until 10.15. I was fed overnight and woke up feeling considerably better this morning.
It is now Sunday lunchtime (well, for those people who can eat!) and I’m feeling relatively well. The Professor dropped by and I managed to get him to answer a few questions, which is quite an achievement:
The dreadful accumulation of foam in the throat, mainly overnight, and the accompanying cough, could last for another 2 months. It could take my voice up to a full year to recover fully.
Still, every day that goes by is another day closer to being done with all this aggravation and disruption.
Friday, 8 October 2010
A phase of consolidation
There have been small steps in progress yesterday and today, but on the whole, it appears that I'm in a phase of consolidation. After 12 days of complete constipation, they're now pumping laxatives into me to loosen me up. They've put me on antibiotics as a precaution. A few more tubes have gone.
The Professor sounded very confident and optimistic this morning, more than at any other time until now. I'm feeling generally good and have made a few excursions out into the park on my own to enjoy a bit of autumn sunshine.
It looks as though I'll remain here until the second half of next week before transferring to rehab. I'm hoping that I'll be able to go home from here for half a day or a day to switch some laundry and get a few bits and pieces together for the rehab. It will be too far for anyone to be able to bring me anything once I'm there so I'd better make sure I have all the necessary equipment before I leave.
I phoned the kennels this afternoon and announced that I probably won't be able to take the dog back until January or February. That's okay. They'll keep him there, and he's happy enough in those surroundings. Unfortunately, I don't have another solution for him.
The Professor sounded very confident and optimistic this morning, more than at any other time until now. I'm feeling generally good and have made a few excursions out into the park on my own to enjoy a bit of autumn sunshine.
It looks as though I'll remain here until the second half of next week before transferring to rehab. I'm hoping that I'll be able to go home from here for half a day or a day to switch some laundry and get a few bits and pieces together for the rehab. It will be too far for anyone to be able to bring me anything once I'm there so I'd better make sure I have all the necessary equipment before I leave.
I phoned the kennels this afternoon and announced that I probably won't be able to take the dog back until January or February. That's okay. They'll keep him there, and he's happy enough in those surroundings. Unfortunately, I don't have another solution for him.
Wednesday, 6 October 2010
A laugh a day keeps the doctors at bay
If laughter is the best medicine, I should be a picture of vibrant good health and vitality after this morning’s visit from the Professor and three of his minions. When they come storming through the door, it’s like being attacked by a regiment of grenadiers. After asking me how I was and not waiting for an answer, he said “Now what’s with this bloody leaking tube?” I showed it to him. “Gimme a pair of gloves”, he barked and was immediately handed some. He then literally tore the bandage off the top of the PEG connection and his temper worsened. “Who the hell’s done this? It’s a complete dog’s dinner. No wonder the bloody thing is leaking. Scissors!”
I didn’t dare tell him that the person responsible for the mess was the Professor’s colleague, another Professor who runs the gastroenterology department. So now Prof S started unscrewing bits of valve and things, muttering to himself all the time “Bloody mess. I have to do everything myself in this place. What the hell are the nurses for? Bloody ridiculous”.
I had never heard him swear before. He was certainly making up for it now. “Now this bit belongs on this one, except that they don’t match. Why don’t they match? Eh? What? Somebody’s been tampering with the bottom bit, using a monkey-wrench by the look of it. That’s why. Haven’t we even got a pair of pliers in this place?
His three minions were standing at the wall behind him, watching the conjuror at work. Eventually, he seemed satisfied that had reconstructed the valve. Except when he let it go, there was water squirting everywhere again. The Professor nearly had a seizure while the three minions were in clear pain because they wanted so desperately to laugh but didn’t dare to do so. I just lay there with my bed gradually turning into a spa while water gushed out of the pipe. “Sh*t”, goes the Professor, “We don’t need this frigging thing anyway. I’m taking it out. Someone get me a GT7VB9 parallel intubation whatsname with an F9 screw clip” (or something like that – I wouldn’t know it from a bar of soap). One of the assistants dashed off and returned with a valve that looked pretty much like the original one. Anyway it seemed to stem the flow. Except that the nurse saw that there was now water escaping from another point along the tube. More panic.
It took them twenty full minutes to get the new valve fitted and working properly. When the Professor said he had to dash off to continue with his rounds, I said “OK, Professor, Thanks very much for the swimming lesson!”
He looked over his shoulder at me and said “Just don’t tell your son!”
Latest status three hours later: The tube is holding. But Zurich has issued a tsunami warning...!!
Apart from that, today has been pretty reasonable. The painkillers are working fine during the day but not at night. They’re trying to find a solution with which there can be a constant 24-hour flow without my having to trigger it (which of course I can’t do in my sleep).
So that’s the news for today.
I didn’t dare tell him that the person responsible for the mess was the Professor’s colleague, another Professor who runs the gastroenterology department. So now Prof S started unscrewing bits of valve and things, muttering to himself all the time “Bloody mess. I have to do everything myself in this place. What the hell are the nurses for? Bloody ridiculous”.
I had never heard him swear before. He was certainly making up for it now. “Now this bit belongs on this one, except that they don’t match. Why don’t they match? Eh? What? Somebody’s been tampering with the bottom bit, using a monkey-wrench by the look of it. That’s why. Haven’t we even got a pair of pliers in this place?
His three minions were standing at the wall behind him, watching the conjuror at work. Eventually, he seemed satisfied that had reconstructed the valve. Except when he let it go, there was water squirting everywhere again. The Professor nearly had a seizure while the three minions were in clear pain because they wanted so desperately to laugh but didn’t dare to do so. I just lay there with my bed gradually turning into a spa while water gushed out of the pipe. “Sh*t”, goes the Professor, “We don’t need this frigging thing anyway. I’m taking it out. Someone get me a GT7VB9 parallel intubation whatsname with an F9 screw clip” (or something like that – I wouldn’t know it from a bar of soap). One of the assistants dashed off and returned with a valve that looked pretty much like the original one. Anyway it seemed to stem the flow. Except that the nurse saw that there was now water escaping from another point along the tube. More panic.
It took them twenty full minutes to get the new valve fitted and working properly. When the Professor said he had to dash off to continue with his rounds, I said “OK, Professor, Thanks very much for the swimming lesson!”
He looked over his shoulder at me and said “Just don’t tell your son!”
Latest status three hours later: The tube is holding. But Zurich has issued a tsunami warning...!!
Apart from that, today has been pretty reasonable. The painkillers are working fine during the day but not at night. They’re trying to find a solution with which there can be a constant 24-hour flow without my having to trigger it (which of course I can’t do in my sleep).
So that’s the news for today.
Tuesday, 5 October 2010
Another hammer blow
As David said recently, I must have upset the gods hugely. I was told this afternoon that the three tiny spots on my lungs have tested positive for cancer. It is the first time that anything has appeared outside the oesophagus.
The spots were so tiny that they weren’t even detected by the PET CT 7 weeks ago. And they were cut out of me during the first operation, so that’s a glimmer of hope – very tiny, very young and now, in any case, gone. They have, however, meant that the strategy has been changed and now looks like this:
1. I will be spending about another week here to get the feeding through the tube stabilised and working properly. During this time, the nourishment will also be adapted to have a positive effect on the liver which is damaged, as we know, but not too seriously.
2. I will then be spending a minimum of two weeks and a maximum of three weeks in rehabilitation. I don’t yet know where that will be – presumably wherever they can find a vacant room for me. Linda will be coming over on the 23rd, which will be right in the middle of that rehab phase.
3. After rehab, there will be two cycles of chemotherapy, each of them lasting three weeks, probably with a brief pause in the middle if they are going well. I should be based at home for that time.
4. After chemotherapy there will be another PET CT to see whether there are any other problem areas in the meantime. That is most unlikely because chemotherapy works on the entire body, not just on any single parts of it.
5. Assuming that the PET CT is okay, the second and final operation will then take place. That is likely to be immediately before or immediately after the Christmas holiday, most probably after it. I will then need a month or more to adapt to the new situation and start getting back to normal.
The news has hit me like a hammer and I’m feeling very down about it. It could, of course, be very much worse, but after all I’ve been through for such a hellishly long time, I was hoping that I wouldn’t have to go through even more months like this.
The spots were so tiny that they weren’t even detected by the PET CT 7 weeks ago. And they were cut out of me during the first operation, so that’s a glimmer of hope – very tiny, very young and now, in any case, gone. They have, however, meant that the strategy has been changed and now looks like this:
1. I will be spending about another week here to get the feeding through the tube stabilised and working properly. During this time, the nourishment will also be adapted to have a positive effect on the liver which is damaged, as we know, but not too seriously.
2. I will then be spending a minimum of two weeks and a maximum of three weeks in rehabilitation. I don’t yet know where that will be – presumably wherever they can find a vacant room for me. Linda will be coming over on the 23rd, which will be right in the middle of that rehab phase.
3. After rehab, there will be two cycles of chemotherapy, each of them lasting three weeks, probably with a brief pause in the middle if they are going well. I should be based at home for that time.
4. After chemotherapy there will be another PET CT to see whether there are any other problem areas in the meantime. That is most unlikely because chemotherapy works on the entire body, not just on any single parts of it.
5. Assuming that the PET CT is okay, the second and final operation will then take place. That is likely to be immediately before or immediately after the Christmas holiday, most probably after it. I will then need a month or more to adapt to the new situation and start getting back to normal.
The news has hit me like a hammer and I’m feeling very down about it. It could, of course, be very much worse, but after all I’ve been through for such a hellishly long time, I was hoping that I wouldn’t have to go through even more months like this.
Tuesday lunchtime
I was told this morning that they are going to remove another catheter from my throat (good riddance!) and I'm to have another X-ray to make sure that everything is still as stable as it was yesterday.Beyond that, there's still no knowing how things are going to progress further.
The biggest question mark is formed by the suspicious little spots found in my lungs. The analysis report hasn't yet been received. I haven't felt any fear or even anxiety about all this treatment up until now, but I must confess that I'm seriously on tenterhooks until I hear about the lungs. That is the scariest part of the whole situation at the moment.
Apart from that, I'm able to get up and around to a certain extent and am generally in reasonable spirits. I hope everythng is well with my millions of blog-readers...!!
The biggest question mark is formed by the suspicious little spots found in my lungs. The analysis report hasn't yet been received. I haven't felt any fear or even anxiety about all this treatment up until now, but I must confess that I'm seriously on tenterhooks until I hear about the lungs. That is the scariest part of the whole situation at the moment.
Apart from that, I'm able to get up and around to a certain extent and am generally in reasonable spirits. I hope everythng is well with my millions of blog-readers...!!
Monday, 4 October 2010
Back to sleeping properly
Well, that was a much better night. There was practically no pain, so I was able to doze off quite quickly and get a good five hours of sleep before being woken up for the first time by a nurse in search of some blood. I don't mind being in the care of vampires but I wish they'd pursue their hobby at more sensible hours.
Apart from a visit to or from the gastroenterology people, I have no idea what's on the programme for today. Hopefully not too much heavy traffic booming through my room all day long.
Apart from a visit to or from the gastroenterology people, I have no idea what's on the programme for today. Hopefully not too much heavy traffic booming through my room all day long.
Monday gradually improving
The physiotherapist arrived here at about eleven, just after I’d had a good wash and clean-up. She said she’d shown me everything I needed, so now it was up to me to get out of bed two or three times a day and go for a short walk. I would be fine on my own. So no sooner had she cleared off again than I put my bathrobe on and went off down the corridor. Somehow, don’t ask me how, I could just FEEL that something wasn’t quite right. It didn’t become obvious until I got back to my room and went to open the curtains. Suddenly – whoosh! There was liquid pouring out of a feeding tube and I had no idea where it belonged. I pushed the panic button and two nurses turned up. But this was too much for them. The repair of this job needed a doctor, so they went in search of one. She patched up the problem but now I’m waiting for somebody from the gastroenterology department to turn up and fix it properly. It’s a catheter that has come loose and no-one seems to know how deep it should go or how it should be anchored.
All my cleaning myself up was a waste because now I had yucky stuff everywhere. Nevertheless, all this cafuffle had made me late for my x-ray, so I had to get wheelchaired down there first. That was a performance in itself, getting decent x-rays of me in a standing position while holding two dozen tubes and cables off-shot.
Once that was done, I was wheeled back and am now waiting for the gastroenterologist to turn up. The doctor from the pain unit has arrived in the meantime and, following the Professor’s instructions, removed the thorax drainage tube (without question the most painful thing I have EVER had done in my life), then boosted the painkiller fluid up by 50% in strength. Most the pain has gone now. Still a bit stiff over the right-hand shoulder-blade but much better than it has been.
Stir crazy
This time last week, I was on the operating table. Although things have allegedly gone well since then, time seems to have dragged. Last night was characterised by severe chest and back pains which made sleeping almost impossible. I started snapping at the nurses who continually disturbed me once I DID finally manage to get off. All in all, I think I'm beginning to go a bit stir crazy.
The Professor isn't much of a help. He visited me this morning with two of his minions. I asked him whether he had the histiology reports on the little cells that he had found in the lungs. He said no, he hadn't received them yet. I asked him how things were supposed to progress from here. He said it all depended on the histiology things. If there was now cancer of the lung to worry about, it might mean two whole cycles of chemotherapy before any further operating is done. In any case, I would be sent off for some rehab, but there was no saying when that might be.
It's all so highly frustrating. Linda has booked to come over here on 23rd October for a few days, so that's something to look forward to, even though I'm not going to be much of a host by then. In the meantime, I've got to kick my heels in this place and try not to go completely up the wall. If only they could get rid of the pains. That would already be a huge step in the right direction.
The Professor isn't much of a help. He visited me this morning with two of his minions. I asked him whether he had the histiology reports on the little cells that he had found in the lungs. He said no, he hadn't received them yet. I asked him how things were supposed to progress from here. He said it all depended on the histiology things. If there was now cancer of the lung to worry about, it might mean two whole cycles of chemotherapy before any further operating is done. In any case, I would be sent off for some rehab, but there was no saying when that might be.
It's all so highly frustrating. Linda has booked to come over here on 23rd October for a few days, so that's something to look forward to, even though I'm not going to be much of a host by then. In the meantime, I've got to kick my heels in this place and try not to go completely up the wall. If only they could get rid of the pains. That would already be a huge step in the right direction.
Saturday, 2 October 2010
A slight case of overkill
Sunday morning – 4 a.m.
A slight case of overkill
At this unearthly time on a Sunday morning, I have two gripes. One of them is that my voice is still practically non-existent – I can only communicate in a hoarse whisper. The other one is that the pain-killers don’t seem to be having any effect on the sharp pain in my shoulder-blade. I would be feeling generally okay if it wasn’t for those annoyances. And since I’m annoyed about them, my irritation is radiating out to encompass some of the other things that are happening here.
I thought I’d settle down for an early night at about 10 o’clock while the pain was fairly mild. At 11.45, one of the nurses marched in to take my blood pressure. Why on earth at that time? It hasn’t happened after 10 p.m. before. She then proceeded to tell me off for lying too flat. The top part of my body must be higher than the lower part to help the wounds to heal. Trouble is, I ALWAYS lie flat in bed (I don’t even think my bed at home is adjustable) and doing what I was told tonight just caused additional pain. Earlier on, Mrs. Blöchlinger annoyed me too. She doesn’t want me to drink anything fizzy, even though I’m only allowed 2 dl a day anyway. Water she wants to me drink – water! I told her water was for fish, not for human beings, but she wasn’t to be dissuaded. She tippled in a few drops of syrup to give the yucky stuff some taste and poured my Sinalco away.
I get a steady queue of people dropping by whenever they feel like it during the day. I’ve lost count of them, never mind remembering all their names. I wrongly believed that a hospital was a place where you could get some rest after a sickness or an accident. I didn’t realise that it’s actually pretty much like Victoria Station in the rush hour most of the time.
I know I shouldn’t complain really. Things until now have gone better than expected and the people here have all been doing their best to get the job done. But I still have this feeling of “overkill”. In my personal case, less care would be better.
A great surprise on a Saturday afternoon
A spectacular bouquet of roses arrived his afternoon, sent by my lovely Linda. Since my room is rather like a deluxe prison cell without even so much as a picture on any of the walls, this new splash of colour was just what was needed. Fantastic!
Saturday update
Saturday morning
I had a better night; I guess I slept for a total of about 6 hours. I still have pains in the shoulder-blade and in the chest where they removed the thorax tube yesterday. They’re not terribly intense except when I turn myself in certain positions. I suppose the lesson is: “Don’t turn yourself in certain positions”. Somewhat easier said than done, that is.
I’m expecting my bed-bath in about half an hour, although it’s no longer going to be as much fun. Ms Krantz simply does my feet and legs now. I do the rest of myself in front of the mirror. Comparatively boring!
I’m not expecting much else to happen today. I’ll update my blog as the day passes by. Pete has flown off to Chicago and Danny is busy in St. Gallen until Sunday. That’s fine. I should be able to relax more today than in the rather hectic past few days.
Professor Schneider paid me a quick visit this morning and seemed more cheerful than on other occasions. Nothing more to come out over this weekend, but there’s a possibility that the drainage tubes might come out on Monday. That would make it much easier to get up out of bed and go for walks. Less embarrassing too. It’s not nice walking around with a bag swinging between your legs containing half a litre of urine... Yuk!
I should be in England today, but of course that became impossible. I’d certainly prefer to be there than to be languishing here. Oh well, it can’t be helped and it’s all for the best in the longer term.
Linda has been sending me cheerful e-mails every evening since the op. She was clearly very worried while I was on the butcher’s slab but all the more relieved when she was told that everything had gone well. She has been absolutely wonderful throughout.
Friday, 1 October 2010
A curious sort of day
It's Friday evening now and I'm ready for a good night's sleep if at all possible. The pain-killing infusion was taken out today, as was the thorax tube and the catheter into my spine. I've been given a new pain-killing infusion which I can regulate myself with a push-button gadget. Although quite a few things have now been dismantled, there still seem to be dozens upon dozens of tubes and cables all over the place, all connected to me in one way or another.
Beatrice very kindly paid me a visit this afternoon and she too was amazed at the array of tubes. I had to laugh. Ask Bea to do anything for you and she not only does it immediately but she also does it to the full. She arrived today with a big bag of chewing gum - roughly enough to last me until Christmas 2012...!! Loads of different flavours, so that's brilliant because one of the depressing parts of this whole story is not being able to swallow anything. The only ways to avoid a neutral, drab feeling in your mouth are either to rinse your mouth out with fizzy drinks (like Sinalco fizzy orange or ginger ale) or to chew chewing gum. Bea found a whole load of different flavours for me so I was delighted.
I am allowed to drink 2 dl of liquid a day as from today. It's actually a bit silly because the fluid simply goes down your throat and into the stoma bag; there is nowhere else for it to go until the oesophagus has been replaced. Still, like the chewing gum, it's another little tiny positive contribution to getting well and, as such, is a welcome sign of things moving in the right direction.
I was sitting at the table from 1030 until about 1345 today and it was evidently too much because I've had very painful backache since then. I'm hoping that the new infusion works so that I can sleep tonight.
That's it for today's adventures. More thrilling news tomorrow.
Beatrice very kindly paid me a visit this afternoon and she too was amazed at the array of tubes. I had to laugh. Ask Bea to do anything for you and she not only does it immediately but she also does it to the full. She arrived today with a big bag of chewing gum - roughly enough to last me until Christmas 2012...!! Loads of different flavours, so that's brilliant because one of the depressing parts of this whole story is not being able to swallow anything. The only ways to avoid a neutral, drab feeling in your mouth are either to rinse your mouth out with fizzy drinks (like Sinalco fizzy orange or ginger ale) or to chew chewing gum. Bea found a whole load of different flavours for me so I was delighted.
I am allowed to drink 2 dl of liquid a day as from today. It's actually a bit silly because the fluid simply goes down your throat and into the stoma bag; there is nowhere else for it to go until the oesophagus has been replaced. Still, like the chewing gum, it's another little tiny positive contribution to getting well and, as such, is a welcome sign of things moving in the right direction.
I was sitting at the table from 1030 until about 1345 today and it was evidently too much because I've had very painful backache since then. I'm hoping that the new infusion works so that I can sleep tonight.
That's it for today's adventures. More thrilling news tomorrow.
Today's progress & thoughts on quality of life
It wasn't a good night. For some reason, it took me until 3 a.m. to get to sleep, even though I'd had an active day without any daytime sleep. I simply couldn't get off, and when I finally did, one of the pump machines ran out of contents at 5.30 and started making its usual, terrible racket so that woke me up again.
However, once the new day - the first one of a new month - got underway, things went quite well. The physiotherapist arrived for a very brief visit, did a couple of breathing exercises with me and then told me that I could walk around on my own as much as I wanted today and over the weekend while she's off duty. I'm still pretty much cabled up, so I in any case have to take the rack with the pumps and drips everywhere with me. I can hang on to that if I start getting weak and/or giddy. The weather is grey and chilly, so I don't think I'll risk a walk in the park just yet, although it would do me good. Unfortunately, my voice is almost entirely non-existent today.
This afternoon, two further tubes are due to be taken out and then I'll have some kind of painkiller fed in through a vein. I'll apparently be able to regulate it myself, depending on whether I have any pain and how strong it is. So far, incredible though it may seem, I haven't had any pain at all.
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SOME THOUGHTS ON "QUALITY OF LIFE"
People have generally been kind and considerate and held off with criticism, but there have been the odd one or two who haven't been able to suppress a desire to tell me that this is the result of an adult lifetime of smoking and drinking. Perhaps they're right, although even if they are, they haven't really got any entitlement to pass comment.
I have always regarded smoking and drinking as elements of what I personally perceive to be "quality of life". I have never been visibly or perceptibly drunk except in my very early teens after a crazy Christmas party. I have never drunk so much that I lost my senses or saw pink elephants, and I have never taken any risks with drink driving, neither for myself nor for anyone else. I have always been a moderately heavy, controlled drinker and I don't make any excuses for it.
Smoking is a similar phenomenon. I have been smoking for 45 years or so and have always enjoyed it. These days, of course, the zealots who would be delighted if they could ban EVERYTHING have made life a misery for smokers. You feel like a leper now if you light up a cigarette, even outdoors, which is basically the only place you CAN light up.
So now, being unable to drink and/or smoke while I'm incarcerated in this hospital, I have to ask myself some very searching questions. I haven't experienced any significant withdrawal symptoms from either of the "bad habits". So there's no logical reason not to take this opportunity and to stop drinking and smoking forever. Great! There are lots of very good reasons to do so. But having said that, and although it might sound stupid, I will no longer have the same quality of life; a part of it will be missing.
I have, on the other hand, discovered other things that I enjoy now whereas I practically ignored them in the past. They're silly little things, but they add up to perhaps a revised way of living and enjoying. For example, I have discovered Starbucks coffee (possibly as one of the last humans on the planet!). I've found new freedom in being able to get into the car at any time and take myself off somewhere without first having to think about whether or not I've had a drink. I've regained my love of ice-cream which I lost sometime in my teens. Lots of little things like that, I suppose, represent quality of life because at the moment, stuck here in hospital, I can't enjoy any of them and can't wait to be able to get back to them.
However, once the new day - the first one of a new month - got underway, things went quite well. The physiotherapist arrived for a very brief visit, did a couple of breathing exercises with me and then told me that I could walk around on my own as much as I wanted today and over the weekend while she's off duty. I'm still pretty much cabled up, so I in any case have to take the rack with the pumps and drips everywhere with me. I can hang on to that if I start getting weak and/or giddy. The weather is grey and chilly, so I don't think I'll risk a walk in the park just yet, although it would do me good. Unfortunately, my voice is almost entirely non-existent today.
This afternoon, two further tubes are due to be taken out and then I'll have some kind of painkiller fed in through a vein. I'll apparently be able to regulate it myself, depending on whether I have any pain and how strong it is. So far, incredible though it may seem, I haven't had any pain at all.
--------
SOME THOUGHTS ON "QUALITY OF LIFE"
People have generally been kind and considerate and held off with criticism, but there have been the odd one or two who haven't been able to suppress a desire to tell me that this is the result of an adult lifetime of smoking and drinking. Perhaps they're right, although even if they are, they haven't really got any entitlement to pass comment.
I have always regarded smoking and drinking as elements of what I personally perceive to be "quality of life". I have never been visibly or perceptibly drunk except in my very early teens after a crazy Christmas party. I have never drunk so much that I lost my senses or saw pink elephants, and I have never taken any risks with drink driving, neither for myself nor for anyone else. I have always been a moderately heavy, controlled drinker and I don't make any excuses for it.
Smoking is a similar phenomenon. I have been smoking for 45 years or so and have always enjoyed it. These days, of course, the zealots who would be delighted if they could ban EVERYTHING have made life a misery for smokers. You feel like a leper now if you light up a cigarette, even outdoors, which is basically the only place you CAN light up.
So now, being unable to drink and/or smoke while I'm incarcerated in this hospital, I have to ask myself some very searching questions. I haven't experienced any significant withdrawal symptoms from either of the "bad habits". So there's no logical reason not to take this opportunity and to stop drinking and smoking forever. Great! There are lots of very good reasons to do so. But having said that, and although it might sound stupid, I will no longer have the same quality of life; a part of it will be missing.
I have, on the other hand, discovered other things that I enjoy now whereas I practically ignored them in the past. They're silly little things, but they add up to perhaps a revised way of living and enjoying. For example, I have discovered Starbucks coffee (possibly as one of the last humans on the planet!). I've found new freedom in being able to get into the car at any time and take myself off somewhere without first having to think about whether or not I've had a drink. I've regained my love of ice-cream which I lost sometime in my teens. Lots of little things like that, I suppose, represent quality of life because at the moment, stuck here in hospital, I can't enjoy any of them and can't wait to be able to get back to them.
Thursday, 30 September 2010
Baby steps
Two of the tubes were taken out today. A third one will come out tomorrow. And I should be able to drink a limited amount for the first time.Only baby steps, I know, but highly encouraging.
Pete visited me this evening. It's great to have such supportive, loving sons. I'm extremely proud of both of them.
Pete visited me this evening. It's great to have such supportive, loving sons. I'm extremely proud of both of them.
Synopsis until now
This is more for me than for anyone else, but perhaps there will be one or other cancer patient who wants to join me in a chat. Let me just give you a summary of my situation first.
I am a 59-year-old British-born male who has lived in Switzerland since 1974.
In April 2008, I found that I was suddenly having difficulty swallowing. I went to my family doctor who immediately sent me on to an ear, nose and throat specialist. As the weeks went by, I was shunted from one specialist to another, a constant stream of different doctors and machines. It was only in June that a neurologist, consulted about a different problem, gave me an MRI and discovered a tumour at the top of my throat.
I went for a full month of radiation and chemotherapy in the September. By October 2008, it appeared that the tumour had been conquered. On the other hand, the treatment destroyed all my teeth. 28 of them had to be reconstructed, a process that took until July 2010 to be completed. It also cost the equivalent of about £40,000!!
My wife Terenzia died suddenly and unexpectedly on Boxing Day 2008. It was without question the worst year of my life. But 2009 was difficult too. The Head of Gastroenterology discovered high-grade dysplastic tissue in my oesophagus 3 times. The first time, I was headed for another long bout of radiation and chemotherapy - another full month of it. After that, the body had taken as much as it possibly could. The next two cases of dysplasia were dealt with by means of mucosectomies (effectively scratching the dysplastic areas out of the oesophagus).
Just when I thought that things were finally under control, a "routine" check revealed that the original tumour had risen like a phoenix from the ashes. Now there was no choice other than to take out the entire oesophagus, together with the tumour and another two or three dysplastic zones.
The first attempt at the operation, on 17th September, was aborted because I was found to have cirrhosis of the liver. Mild by all reports, but enough to preclude removal of the entire oesophagus, or so they claimed at the time. I went home for a few days and then came back for a second attempt on the 24th September. This time, it worked. The operation took place on Monday 27th September and apparently took 9 1/2 hours, and that was just to remove the oesophagus. A second operation, to replace the missing bit with a stretch of small intestine, will take place at some time within the next 7 to 8 weeks.
So as I write this, I am in my hospital bed, in room D21 South of the University Hospital in Zurich and am hoping that this enormous exercise will give me a few more years of quality life. There is so much to live for, so much more to experience before my time is up. So I am fighting, much to the admiration of the staff here, and looking forward to being freed from hospital when the time is right.
I am a 59-year-old British-born male who has lived in Switzerland since 1974.
In April 2008, I found that I was suddenly having difficulty swallowing. I went to my family doctor who immediately sent me on to an ear, nose and throat specialist. As the weeks went by, I was shunted from one specialist to another, a constant stream of different doctors and machines. It was only in June that a neurologist, consulted about a different problem, gave me an MRI and discovered a tumour at the top of my throat.
I went for a full month of radiation and chemotherapy in the September. By October 2008, it appeared that the tumour had been conquered. On the other hand, the treatment destroyed all my teeth. 28 of them had to be reconstructed, a process that took until July 2010 to be completed. It also cost the equivalent of about £40,000!!
My wife Terenzia died suddenly and unexpectedly on Boxing Day 2008. It was without question the worst year of my life. But 2009 was difficult too. The Head of Gastroenterology discovered high-grade dysplastic tissue in my oesophagus 3 times. The first time, I was headed for another long bout of radiation and chemotherapy - another full month of it. After that, the body had taken as much as it possibly could. The next two cases of dysplasia were dealt with by means of mucosectomies (effectively scratching the dysplastic areas out of the oesophagus).
Just when I thought that things were finally under control, a "routine" check revealed that the original tumour had risen like a phoenix from the ashes. Now there was no choice other than to take out the entire oesophagus, together with the tumour and another two or three dysplastic zones.
The first attempt at the operation, on 17th September, was aborted because I was found to have cirrhosis of the liver. Mild by all reports, but enough to preclude removal of the entire oesophagus, or so they claimed at the time. I went home for a few days and then came back for a second attempt on the 24th September. This time, it worked. The operation took place on Monday 27th September and apparently took 9 1/2 hours, and that was just to remove the oesophagus. A second operation, to replace the missing bit with a stretch of small intestine, will take place at some time within the next 7 to 8 weeks.
So as I write this, I am in my hospital bed, in room D21 South of the University Hospital in Zurich and am hoping that this enormous exercise will give me a few more years of quality life. There is so much to live for, so much more to experience before my time is up. So I am fighting, much to the admiration of the staff here, and looking forward to being freed from hospital when the time is right.
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