There has been precious little to report since my last contribution. The cannula was mercifully taken out and substituted by a place-holder which is much more comfortable, although I'll only have it until tomorrow.
Ah yes, tomorrow - a very important day. At some stage in the late afternoon, I shall be wheeled down to the main building and the gastroenterology department where the place-holder I've just mentioned as well as a stent will be removed. Then a swallowing channel will be opened up and the final stoma should be fitted. It sounds highly complex, but in fact it's said to be a simple little operation under full anaesthetic. It should take a maximum of 15 minutes.
There's bound to be some more soreness for a while, but theoretically, as from tomorrow evening, I should be able to start swallowing, albeit very cautiously. After all these months, it will be great if I really can start swallowing again. My son Pete and I have already agreed that we'll go directly from the hospital to a bar somewhere in town for a celebratory drink on the day I'm released.
There are laughs to be had, even in adversity. Linda said that in view of the news I announced about the cancer returning, I might as well have a drink and a smoke once I'm out of here. I pointed out to her that I have to breathe through a stoma in the throat, and that will be forever. Now how am I supposed to smoke? Just imagine me walking down the Bahnhofstrasse, Zurich's main shopping thoroughfare, puffing at a fag through the stoma in my throat!!!! I bet that would cause a few heads to turn.... The best I can hope for is a nice Cuban cigar from time to time because there's no inhaling involved.
Anyway, tomorrow should be a major step in the right direction. The op is scheduled for late afternoon, so I don't suppose I'll be able to report on the results until Wednesday or Thursday.
In all other respects, I feel fine. Practically certain that I'll be out of here next week unless there are any more setbacks.
Monday, 31 January 2011
Wednesday, 26 January 2011
Fighting back
Thank you for the very kind comments on here and e-mails that I've received since announcing the news. Perhaps I should have kept it to myself after all. I didn't realise how much grief it was going to cause.
Now that I've digested the shock, I'm feeling much better. The dreaded cannula is scheduled to come out tomorrow - which means that swallowing exercises won't be more than a couple of days away. The oncologists are lined up for the beginning of next week to sort out how the chemotherapy is going to be structured. And I've got the physiotherapist booked for tomorrow afternoon for an hour of muscle exercise. If things carry on at this rate, I should be able to go home within the next fortnight.
The aim now is to squeeze the very best I can out of each and every day (which, I suppose, is how you should live anyway, whatever your state of health). I've tended to be positive throughout this whole ordeal but now, more than ever, I refuse to mope or let anything get me down. Linda and I still have a lot of wonderful times ahead of us and I'm damned if I'll let anything distract me or us from making the very best of our time together.
Now that I've digested the shock, I'm feeling much better. The dreaded cannula is scheduled to come out tomorrow - which means that swallowing exercises won't be more than a couple of days away. The oncologists are lined up for the beginning of next week to sort out how the chemotherapy is going to be structured. And I've got the physiotherapist booked for tomorrow afternoon for an hour of muscle exercise. If things carry on at this rate, I should be able to go home within the next fortnight.
The aim now is to squeeze the very best I can out of each and every day (which, I suppose, is how you should live anyway, whatever your state of health). I've tended to be positive throughout this whole ordeal but now, more than ever, I refuse to mope or let anything get me down. Linda and I still have a lot of wonderful times ahead of us and I'm damned if I'll let anything distract me or us from making the very best of our time together.
Monday, 24 January 2011
News I didn't want to hear
Hello, folks
My larynx was taken out on Friday. There was no real alternative if I was to have any quality of life for the time I've got left. I wouldn't have been able to eat, drink or speak for the rest of my life.
It was a four-hour operation and I was still living on another planet on Saturday. The surgeon apparently did his rounds, but I didn't register his presence. He had a day off on Sunday and his deputy merely told me that the operation had gone well.
This morning (Monday), the surgeon paid me a visit and gave me the news I didn't want to hear. The operation had gone as planned and everything in that respect was fine. But when they removed the larynx, they found a whole nest of cancer cells behind it, where the oesophagus had previously been. They have already spread and can't be removed surgically.
The facts can't be changed, so now what do they mean and what is to be done?
More than ever, it is crucial that I get some quality of life now. The priority is to enable me to swallow. That should be possible once the operation wounds have healed, which is likely to take about another 10 days to 2 weeks. I will be given a gadget that will enable me to speak, although with a dreadful voice like a robot. Better than nothing. Being trained to use it properly will be on an out-patient's basis.
The plan then is that I will be back home (at long last – after almost 5 months!) and will be taken over by the oncologists for chemotherapy, again on an out-patient's basis. They will go for a type of chemical that doesn't have any significant side effects. Its job won't be to cure the cancer (that isn't possible) but to try to keep it stable for as long as possible. They don't offer forecasts these days. My life expectancy could be anything from a couple of months to a couple of years. There is no way of knowing.
It's ironic that after years of searching for happiness and finally finding it with Linda, I'm to be denied a long and happy retirement with her. We'll just have to make as much as we can of the time that's left.
That's the situation, folks. Sorry to be the bearer of bad tidings, but that's my destiny and I have no choice but to accept it.
My larynx was taken out on Friday. There was no real alternative if I was to have any quality of life for the time I've got left. I wouldn't have been able to eat, drink or speak for the rest of my life.
It was a four-hour operation and I was still living on another planet on Saturday. The surgeon apparently did his rounds, but I didn't register his presence. He had a day off on Sunday and his deputy merely told me that the operation had gone well.
This morning (Monday), the surgeon paid me a visit and gave me the news I didn't want to hear. The operation had gone as planned and everything in that respect was fine. But when they removed the larynx, they found a whole nest of cancer cells behind it, where the oesophagus had previously been. They have already spread and can't be removed surgically.
The facts can't be changed, so now what do they mean and what is to be done?
More than ever, it is crucial that I get some quality of life now. The priority is to enable me to swallow. That should be possible once the operation wounds have healed, which is likely to take about another 10 days to 2 weeks. I will be given a gadget that will enable me to speak, although with a dreadful voice like a robot. Better than nothing. Being trained to use it properly will be on an out-patient's basis.
The plan then is that I will be back home (at long last – after almost 5 months!) and will be taken over by the oncologists for chemotherapy, again on an out-patient's basis. They will go for a type of chemical that doesn't have any significant side effects. Its job won't be to cure the cancer (that isn't possible) but to try to keep it stable for as long as possible. They don't offer forecasts these days. My life expectancy could be anything from a couple of months to a couple of years. There is no way of knowing.
It's ironic that after years of searching for happiness and finally finding it with Linda, I'm to be denied a long and happy retirement with her. We'll just have to make as much as we can of the time that's left.
That's the situation, folks. Sorry to be the bearer of bad tidings, but that's my destiny and I have no choice but to accept it.
Wednesday, 19 January 2011
Countdown
The operation to remove my larynx has been brought forward to this coming Friday, 21st January.
I've been given a booklet on the operation and life after it. There are still a few questions I need to ask, but I think I've got most of the picture now. It will certainly mean quite a radical change in lifestyle and a great deal of out-patient support in the months to come. But I'm confident that I will be able to adjust to the new scenario. I won't really have much choice, come to think of it!
I've been given a booklet on the operation and life after it. There are still a few questions I need to ask, but I think I've got most of the picture now. It will certainly mean quite a radical change in lifestyle and a great deal of out-patient support in the months to come. But I'm confident that I will be able to adjust to the new scenario. I won't really have much choice, come to think of it!
Saturday, 15 January 2011
Capitulation
I had another emergency this morning - a number of blood-clots blocking the airways so that I could hardly breathe. It took two doctors and an hour of torture before I could breathe again.
There then followed another of those discussions about "Where do we go from here?" There are only two possibilities: One of them is to continue as I am now for many weeks or months in the hope that things normalise on their own. In fact, no-one believes that that can happen. The alternative has been discussed before and I always preferred it, but the doctors didn't want it - removal of the larynx. Now they're saying that it's the only way I can expect any quality of life for however long I've got left.
They are sending me a volunteer advisor next week - a man who had his larynx removed a long time ago and today lives a normal life. He will drop by to demonstrate what it's like. Fine, but I have already made my decision and told the surgeon - the larynx will be removed in an operation either on Monday 24th or Tuesday 25th January. I should then be able to eat and drink almost immediately and speech can be tackled afterwards.
In a way, it's the doctors finally admitting that their strategy didn't work. For me, it's a genuine relief to know that the only logical solution is now underway. It will put an end to the dreaded cannula that have caused me so much grief, and although tube feeding will probably continue for a while, I should very quickly be able to eat and drink almost normally so that the tube into the stomach can be removed as well.
There then followed another of those discussions about "Where do we go from here?" There are only two possibilities: One of them is to continue as I am now for many weeks or months in the hope that things normalise on their own. In fact, no-one believes that that can happen. The alternative has been discussed before and I always preferred it, but the doctors didn't want it - removal of the larynx. Now they're saying that it's the only way I can expect any quality of life for however long I've got left.
They are sending me a volunteer advisor next week - a man who had his larynx removed a long time ago and today lives a normal life. He will drop by to demonstrate what it's like. Fine, but I have already made my decision and told the surgeon - the larynx will be removed in an operation either on Monday 24th or Tuesday 25th January. I should then be able to eat and drink almost immediately and speech can be tackled afterwards.
In a way, it's the doctors finally admitting that their strategy didn't work. For me, it's a genuine relief to know that the only logical solution is now underway. It will put an end to the dreaded cannula that have caused me so much grief, and although tube feeding will probably continue for a while, I should very quickly be able to eat and drink almost normally so that the tube into the stomach can be removed as well.
Wednesday, 12 January 2011
The best laid plans
I was on the operating table for 4 hours yesterday, but I don't yet know what they did. The stitch-back of the vocal chord didn't work out because everything down there is enormously swollen. They're waiting until Friday to review the situation again. So what did they do for 4 solid hours? I shall have to try to find out today.
I woke up in the recovery room and felt sore but OK for about an hour. Then, all of a sudden and without any warning, I went into a trembling fit. My whole body trembled uncontrollably for about half an hour before medication stopped it. Then I was measured with a 38.4 degree fever. That rose to 39 degrees by midnight but has normalised again this morning.
So it's back to waiting again. I am still losing weight - down to less than 63 kilos now.
Oh well, I'll just have to keep myself occupied and entertained. Nothing else I can do.
I woke up in the recovery room and felt sore but OK for about an hour. Then, all of a sudden and without any warning, I went into a trembling fit. My whole body trembled uncontrollably for about half an hour before medication stopped it. Then I was measured with a 38.4 degree fever. That rose to 39 degrees by midnight but has normalised again this morning.
So it's back to waiting again. I am still losing weight - down to less than 63 kilos now.
Oh well, I'll just have to keep myself occupied and entertained. Nothing else I can do.
Friday, 7 January 2011
Trial and error
That's the first week of January consigned to history. Linda was here for several hours every day and took great delight in beating me 5-1 at Scrabble. As I write (just after 2 in the afternoon), she is on her way to the airport to fly home. She said she would probably come over again sometime in February.
I might well be home by then. After a long spell of observation with nothing much happening, I was wheeled downstairs for a video x-ray (I didn't know there were such things) of me trying to swallow colour-contrasted liquid. The aim was to capture exactly what happens on video and then for the three main players (those in charge of gastroenterology, visceral surgery and ear-nose-throat) to sit together and analyse exactly what was happening and what to do about it.
The outcome was that the entrance to the new "oesophagus" was very tight. They have now widened it to a certain extent and will do that again two or three times. Then a decision was made to stitch back the nerve at one of the two vocal chords. That nerve is not performing so the vocal chords are permanently locked together which means I can't breathe through them. Now, by stitching back one side, I should be able to breathe and swallow more normally. In fact, if the attempt is successful, it might even mean that I can do without the cannula which would be wonderful.
The strategy is now defined. For the next 2 months, the doctors are going to try every possible way of solving the eating/drinking/speaking problems by conservative means. The stitching back of the nerve described above is a start. That operation (which should take no longer than an hour) is scheduled for next Tuesday. If it works, it will be great. If not, they will try something else. After two months, if nothing has been properly solved, they will then go for the drastic solution - removal of the larynx.
So things are moving. I won't have to stay in hospital for the next two months. As long as there is no further danger of suffocation, I will probably be released and then treatment will continue on an out-patients basis.
Whatever happens, recovery will take many weeks. I have to live with that but am hoping that I will be fit and be able to eat, drink and possibly speak normally by 13th September, which is my son Peter's wedding day. That's the target.
I might well be home by then. After a long spell of observation with nothing much happening, I was wheeled downstairs for a video x-ray (I didn't know there were such things) of me trying to swallow colour-contrasted liquid. The aim was to capture exactly what happens on video and then for the three main players (those in charge of gastroenterology, visceral surgery and ear-nose-throat) to sit together and analyse exactly what was happening and what to do about it.
The outcome was that the entrance to the new "oesophagus" was very tight. They have now widened it to a certain extent and will do that again two or three times. Then a decision was made to stitch back the nerve at one of the two vocal chords. That nerve is not performing so the vocal chords are permanently locked together which means I can't breathe through them. Now, by stitching back one side, I should be able to breathe and swallow more normally. In fact, if the attempt is successful, it might even mean that I can do without the cannula which would be wonderful.
The strategy is now defined. For the next 2 months, the doctors are going to try every possible way of solving the eating/drinking/speaking problems by conservative means. The stitching back of the nerve described above is a start. That operation (which should take no longer than an hour) is scheduled for next Tuesday. If it works, it will be great. If not, they will try something else. After two months, if nothing has been properly solved, they will then go for the drastic solution - removal of the larynx.
So things are moving. I won't have to stay in hospital for the next two months. As long as there is no further danger of suffocation, I will probably be released and then treatment will continue on an out-patients basis.
Whatever happens, recovery will take many weeks. I have to live with that but am hoping that I will be fit and be able to eat, drink and possibly speak normally by 13th September, which is my son Peter's wedding day. That's the target.
Monday, 3 January 2011
Still here
3rd January, and I'm still stuck in hospital with no clear indication of what's supposed to happen next and when.
Linda is here for a week and has already cheered me up greatly. She is being very positive about the whole sorry story. She says that realistically, we are looking at six months or more before the worst is over. She's prepared to live with that. I'm quite sure a lot of women wouldn't be.
Danny and his family flew off to Australia on 1st January. They will be there until the middle of February, so Pete has taken over responsibility for informing everyone if anything goes wrong. I will try to keep up the blog, although there's very little to report.
Linda is here for a week and has already cheered me up greatly. She is being very positive about the whole sorry story. She says that realistically, we are looking at six months or more before the worst is over. She's prepared to live with that. I'm quite sure a lot of women wouldn't be.
Danny and his family flew off to Australia on 1st January. They will be there until the middle of February, so Pete has taken over responsibility for informing everyone if anything goes wrong. I will try to keep up the blog, although there's very little to report.
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