Dear All
It's time for me face facts - I'm not able to continue with this blog. I am presently in a care home in Zurich (the Susenberg Clinic) where I am scheduled to stay until the middle of next week, then it will either be back home or off to another clinic, possibly the Lighthouse in Zurich, until it's all over and I'm released from any more suffering.
The last three years have taught me that there are many truly wonderful people around us who put an enormous amount of effort into supporting us to the extent possible. Thank you to every single one of you who gave me their time and support when I needed it most. It also taught me that the longer things drag on, the more one develops feelings of guilt which just make everything worse.
So this is my last entry on Blogspot - at least in this form and with this topic at the centre.
Farewell and thanks again to you all for your patience and understanding.
Kindest regards
TonyB
Tuesday, 27 September 2011
Thursday, 23 June 2011
Made it to 60
Yesterday, the 22nd June, was my 60th birthday. Nothing much to celebrate under the circumstances, but it was quite a nice day all the same. I spent a small piece of it at the hospital having another session of antibody therapy and being prescribed morphine for the increasing back pains.
The antibodies are being upgraded as from next week. It appears from the latest tests that the tumour is gradually growing, so the therapy is being intensified to counter it.
I am going to England from 8th to 12th July to spend a few days with Linda. It's rather complicated because of having to drip-feed, but we think we've found a way to deal with that. I want to visit my mother for her 82nd birthday while I'm there too. Who knows how long I'll still be able to travel?
The antibodies are being upgraded as from next week. It appears from the latest tests that the tumour is gradually growing, so the therapy is being intensified to counter it.
I am going to England from 8th to 12th July to spend a few days with Linda. It's rather complicated because of having to drip-feed, but we think we've found a way to deal with that. I want to visit my mother for her 82nd birthday while I'm there too. Who knows how long I'll still be able to travel?
Friday, 17 June 2011
The last hope has gone
The operation took place as planned. It put an end to my last hope of gaining at least a little quality of life. The artificial oesophagus had grown together to such an extent that it couldn't be opened again. The consequence is that I will never be able to swallow for as long as I live.
I don't think I need to elaborate on how I feel now. It really was my last hope and, like all the others, it has failed to materialise.
I don't think I need to elaborate on how I feel now. It really was my last hope and, like all the others, it has failed to materialise.
Sunday, 12 June 2011
Another stay in hospital
What a naive little boy I am! There I was, believing that the endoscopy would be an hour under anaesthetic and another hour in the wake-up room and then home to tea and cakes. Instead of that, I have been called up to enter hospital next Wednesday (15th June) for the "operation" (well, it actually WILL be an operation-style endoscopy this time) on Thursday. I don't know how long I'll have to stay after that - probably until they're satisfied that everything is healing and I can be sent home.
At least there's hope that I'll be able to swallow once the artificial oesophagus has been opened up again. That's all the motivation I need to face another stay in hospital. Actually, it's not that bad. I find it fairly easy to get on with the nurses (in German known as "Pflegefachfrauen" - you have to spit to pronounce it properly!), and I get spoiled for a while.
Linda is here in Zurich until Wednesday. We're having an enjoyable time together. Very short, as usual, but there are no alternatives at the moment. I'm looking forward to the time when I can commute to England and back again. I haven't been there since last August.
At least there's hope that I'll be able to swallow once the artificial oesophagus has been opened up again. That's all the motivation I need to face another stay in hospital. Actually, it's not that bad. I find it fairly easy to get on with the nurses (in German known as "Pflegefachfrauen" - you have to spit to pronounce it properly!), and I get spoiled for a while.
Linda is here in Zurich until Wednesday. We're having an enjoyable time together. Very short, as usual, but there are no alternatives at the moment. I'm looking forward to the time when I can commute to England and back again. I haven't been there since last August.
Monday, 6 June 2011
Some good news
I went to the hospital this morning to have a chat with the senior doctor from Ear-Nose-Throat who was in charge of my case while I was stuck there. He was much more positive than I'd expected. For one thing, he replaced the dreaded cannula in my throat with a so-called "Larry tube" which is much shorter and causes much less damage to the mucus membrane. It's also slightly more aesthetic.
He then examined my throat with a camera on the end of a tube and agreed with me that the leak was now closed and the substitute oesophagus was indeed blocked. He said he would organise an endoscopy either on this coming Thursday morning or at the beginning of next week to open it up again. That should enable me to swallow at long last.
I came home feeling that things were definitely looking up.
Yesterday (Sunday) was fun. One of my sons, Peter, obtained his private pilot's licence back in January. I hadn't been well enough to go flying with him until yesterday. Then we went on an hour and a half's flight in a four-seater Piper aircraft across German-speaking Switzerland to the Bernese Alps and back. The views from 8000 to 9000 feet above sea level are even more spectacular than what you see from ground level. Between us, Pete's wife and I took a total of 93 photos. It was a brilliant afternoon out.
He then examined my throat with a camera on the end of a tube and agreed with me that the leak was now closed and the substitute oesophagus was indeed blocked. He said he would organise an endoscopy either on this coming Thursday morning or at the beginning of next week to open it up again. That should enable me to swallow at long last.
I came home feeling that things were definitely looking up.
Yesterday (Sunday) was fun. One of my sons, Peter, obtained his private pilot's licence back in January. I hadn't been well enough to go flying with him until yesterday. Then we went on an hour and a half's flight in a four-seater Piper aircraft across German-speaking Switzerland to the Bernese Alps and back. The views from 8000 to 9000 feet above sea level are even more spectacular than what you see from ground level. Between us, Pete's wife and I took a total of 93 photos. It was a brilliant afternoon out.
Tuesday, 31 May 2011
Still alive
I was somewhat ashamed of myself back in March when I had gone a full month without posting anything on here. Now it's two months to be ashamed about....!! I apologize to anyone who hasn't already forgotten me.
Since I came home from hospital on 11th February, I have felt as though I'm in limbo, as though the whole situation is somehow unreal. Prior to September 2010, there were hopes that the tumour in my throat could be cured. Those hopes were all gone by the time I was sent home in February, minus the ability to eat, drink or speak and having lost 15 kilos in weight. The cancer was still there, and of course still is. For a while, it seemed that I was heading quickly for the grave; those closest to me were preparing themselves for my early funeral.
In fact, despite having practically no quality of life, I have managed to punch on until now. I have recovered a fair amount of weight and become accustomed to being tube-fed and doing without a voice. There is a vague hope that now that the leak in my substitute oesophagus has healed, I might be able to swallow again in the near future. The stretch of intestine that is supposed to replace the oesophagus appears to be blocked; I can only hope that it hasn't grown together to the point where it can no longer be reopened. That is scheduled to be investigated within the next couple of weeks.
I have practically closed my translation business. I still do the odd small job here and there, but I can no longer concentrate sufficiently to provide the necessary quality of work. The days drift by with nothing much to mark them except the one day a week that I have to go to the hospital for another session of antibody therapy. That is a modern alternative to chemotherapy and is supposed to keep the tumour in check and prevent it from spreading to other parts of the body. I have another three sessions to go before the effects are tested, probably by means of a PET-CT.
As I have to be tube-fed, I can't travel which is another irritation. The days of flying to England every couple of months have unfortunately gone, at least for the time being. Fortunately, I can still drive so I take myself off for the occasional excursion, just to get out of the house.
There is, of course, no knowing how long I have left. All treatment now is palliative, as opposed to curative. But I am gradually feeling better. If I can swallow again in the near future, it will make an enormous difference. Perhaps I'll be able to persevere with the speech aid, an expensive gadget from America which should enable me to make myself audibly understood, albeit with a voice like a robot. Until now, I haven't found the perseverence to get to grips with it.
I'm thinking of writing a book about my experience since the initial diagnosis in April 2008. Perhaps it would be of some value to fellow sufferers and/or medical professionals.
That's it for now. I won't make any promises this time, but now that I've revived the blog, it would probably make sense to update it weekly or something like that. I'd better diarise it, otherwise I'll forget again....!!
Since I came home from hospital on 11th February, I have felt as though I'm in limbo, as though the whole situation is somehow unreal. Prior to September 2010, there were hopes that the tumour in my throat could be cured. Those hopes were all gone by the time I was sent home in February, minus the ability to eat, drink or speak and having lost 15 kilos in weight. The cancer was still there, and of course still is. For a while, it seemed that I was heading quickly for the grave; those closest to me were preparing themselves for my early funeral.
In fact, despite having practically no quality of life, I have managed to punch on until now. I have recovered a fair amount of weight and become accustomed to being tube-fed and doing without a voice. There is a vague hope that now that the leak in my substitute oesophagus has healed, I might be able to swallow again in the near future. The stretch of intestine that is supposed to replace the oesophagus appears to be blocked; I can only hope that it hasn't grown together to the point where it can no longer be reopened. That is scheduled to be investigated within the next couple of weeks.
I have practically closed my translation business. I still do the odd small job here and there, but I can no longer concentrate sufficiently to provide the necessary quality of work. The days drift by with nothing much to mark them except the one day a week that I have to go to the hospital for another session of antibody therapy. That is a modern alternative to chemotherapy and is supposed to keep the tumour in check and prevent it from spreading to other parts of the body. I have another three sessions to go before the effects are tested, probably by means of a PET-CT.
As I have to be tube-fed, I can't travel which is another irritation. The days of flying to England every couple of months have unfortunately gone, at least for the time being. Fortunately, I can still drive so I take myself off for the occasional excursion, just to get out of the house.
There is, of course, no knowing how long I have left. All treatment now is palliative, as opposed to curative. But I am gradually feeling better. If I can swallow again in the near future, it will make an enormous difference. Perhaps I'll be able to persevere with the speech aid, an expensive gadget from America which should enable me to make myself audibly understood, albeit with a voice like a robot. Until now, I haven't found the perseverence to get to grips with it.
I'm thinking of writing a book about my experience since the initial diagnosis in April 2008. Perhaps it would be of some value to fellow sufferers and/or medical professionals.
That's it for now. I won't make any promises this time, but now that I've revived the blog, it would probably make sense to update it weekly or something like that. I'd better diarise it, otherwise I'll forget again....!!
Sunday, 27 March 2011
How time flies
To steal a famous line from Mark Twain: "The reports of my death are greatly exaggerated."
I can hardly believe that it has been well over a month since I last posted on here. I have to apologise to all the many people who have enquired after my health in the meantime without getting a response. I simply haven't been able to keep up with everything that has had to be done since I came out of hospital, and being exhausted for about 20 hours a day hasn't helped either.
The situation at this point in time is that I am on antibody therapy as an alternative to chemotherapy. There are practically no side effects apart from permanent tiredness and very dry skin. I have to go to the hospital every Monday and have the drip running for an hour, so it's not too onerous.
At home, I am on the feed drip for a total of about 16 hours a day. There are still hopes that the leak in my "substitute oesophagus" will heal in the course of the time, although I'm told that it could still take months. In the meantime, the inability to eat, drink or speak is difficult to deal with. I suppose you can adapt to almost everything, and I've certainly been doing my best, although it's highly frustrating. I keep my mouth constantly rinsed with all kinds of flavoured drinks, ranging from coffee and tea to fruit juices, milk drinks and even ice lollies. At least my sense of taste is intact. I have an electronic speech aid that is supposed to enable me to speak with a voice like a robot. However, the technique isn't as easy as it seems and it needs a great deal of practice. I haven't had the energy to tackle it properly yet.
On the whole, I feel okay in myself. My weight plummeted from 75 to just under 58 kilos in the five months I was in hospital. That was probably the main reason for my exhaustion. In the meantime, I have managed to push it up just a little - to 61 kilos now. It's moving in the right direction, though far too slowly for my liking. I can manage a total of about 3,000 kilo-calories a day but that's about it. More than that and I start feeling nauseous.
So in summary, I'm okay, thanks mainly to the fantastic support I've been receiving from my sons, my hardworking sister-in-law Bea and, of course, the lovely Linda who has been a tower of strength for me. It's hard to remain patient but there's nothing else I can do for the time being.
I hope you are all doing well too. Now that I'm gradually recovering, I hope I'll be able to update the blog more often.
I can hardly believe that it has been well over a month since I last posted on here. I have to apologise to all the many people who have enquired after my health in the meantime without getting a response. I simply haven't been able to keep up with everything that has had to be done since I came out of hospital, and being exhausted for about 20 hours a day hasn't helped either.
The situation at this point in time is that I am on antibody therapy as an alternative to chemotherapy. There are practically no side effects apart from permanent tiredness and very dry skin. I have to go to the hospital every Monday and have the drip running for an hour, so it's not too onerous.
At home, I am on the feed drip for a total of about 16 hours a day. There are still hopes that the leak in my "substitute oesophagus" will heal in the course of the time, although I'm told that it could still take months. In the meantime, the inability to eat, drink or speak is difficult to deal with. I suppose you can adapt to almost everything, and I've certainly been doing my best, although it's highly frustrating. I keep my mouth constantly rinsed with all kinds of flavoured drinks, ranging from coffee and tea to fruit juices, milk drinks and even ice lollies. At least my sense of taste is intact. I have an electronic speech aid that is supposed to enable me to speak with a voice like a robot. However, the technique isn't as easy as it seems and it needs a great deal of practice. I haven't had the energy to tackle it properly yet.
On the whole, I feel okay in myself. My weight plummeted from 75 to just under 58 kilos in the five months I was in hospital. That was probably the main reason for my exhaustion. In the meantime, I have managed to push it up just a little - to 61 kilos now. It's moving in the right direction, though far too slowly for my liking. I can manage a total of about 3,000 kilo-calories a day but that's about it. More than that and I start feeling nauseous.
So in summary, I'm okay, thanks mainly to the fantastic support I've been receiving from my sons, my hardworking sister-in-law Bea and, of course, the lovely Linda who has been a tower of strength for me. It's hard to remain patient but there's nothing else I can do for the time being.
I hope you are all doing well too. Now that I'm gradually recovering, I hope I'll be able to update the blog more often.
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