Dear All,
Once again I take the opportunity to send out my final update on my Father. It is December 31st, and yes, I am at work. Hopefully we will be let out of here at 13:00, although rumours are such that we might have to work the full day! I'm hoping not.
I send my last update with a smile on my face, and a sense of huge relief. It has now been 1 day short of 3 weeks since my Dad underwent surgery, and has spent these last 20 days in intensive care. The first week, he spent sleeping; The second week, a rollercoaster ride; The third week, getting back on the road to good health.
The 25th, Christmas Day, was a decisive day in my Dads recovery. He had successfully gone through the stages of confusion, tiredness, panic and many more, but on this day he informed my Sister and I that he was now a new man, that he was ready to move on and get better. This was a good day for the family, it meant that the medication he was on was lessened and he was much more aware of everything. I unfortunately managed to catch a cold on Christmas day, and with intensive care it is not permitted really to visit when ill, the risk of infecting others is too great. My Sister did go visit on boxing day, but this was her last visit as her & Ben had to depart to the UK early the next morning. The 27th, 28th, 29th, & 30th my Dad spent alone. I would call everyday and pass messages onto the nurses to forward onto my dad, informing him of the unfortunate situation with not being able to visit. I'm sure he understood, but would have never the less loved some company.
Anyhow, to cut the story short, today they have decided that my Dad is fit to leave the intensive care unit and will be moved out at 11:00. His lungs are much better and his breathing and other vital signs have much improved. They will move him back up to the 18th floor where he used to be (for those that had visited during his therapy) but for how long he will remain there I'm not sure.
It's good news for my Dad has he will now be open for visitors. He'll be out of a room filled with loud peeping machines and hopefully have a more comfortable stay now. I will be going today after work, I'm hoping I'll be there at 14:00 (depending on when they let us out of here). Hopefully we can set up his computer with internet access and he will be able to send out his message(s), and inform you all of his journey from his perspective.
This should be my last update (definitely the last for 2007), it has been quite a privilege keeping so many of you concerned friends of my Dad informed and posted on his developments, and I thank you all for your well wishes, your wonderful and kind words and let me take this opportunity now to wish you all a Happy New Year, may 2008 be a prosperous year, filled with health and happiness for you all!
With Best Regards,
Family White.
Monday, 31 December 2007
Monday, 24 December 2007
2007-12-24 — Newsletter from Chris to All
Dear All,
I take this opportunity, being perhaps one of only a handful of staff members left in the VIC on Christmas Eve with really not much work to be done at all, to send out a further update on my Dads situation as it is now.
I must first say that it has, since my last update, been somewhat of a rollercoaster ride for us, and I think that could be putting it lightly when viewing it from my Dads perspective. I think he will perhaps describe it as having been to hell and back, and perhaps more than just the once. A negative start to an update, but I can assure you that although I start negatively that in the big picture things are looking positive.
It's hard to sometimes put things in an understandable order, so I will try to keep it to the point. In my last update there were hopes of my Dad being out of intensive care by the time my sister arrives on Friday the 21st (1 or 2 days the doctors said, and the phrase '1 or 2 days' is becoming an all to familiar one to me now). He is still in intensive care. It has now been 13 days and from what the doctor told me yesterday he could still be in intensive care for a further '1 or 2 days…'.
Day by Day;
Thursday:
It was decided that my Dad should come off the breathing aid, unfortunately he was not ready, so they had to put him on some other type of breathing aid that pressurises the lungs, so when I saw him that afternoon, he looked very distressed. He had what appeared to be a special space helmet around his head that pumps oxygen and pressurises the lungs. With this contraption on is head it meant that because he no longer had the breathing tube through the nose and down the throat he was able to try speak. That was nice. He wasn't very clear, but with practice that would come. His words though where not words of happiness and joy, he was very distressed. Since his awakening on Tuesday he apparently had had no sleep. From one extreme to the other it would appear. For him, a nightmare, he looked exhausted, he was exhausted, but his body rejected sleep. This, according to the professionals is completely normal, it is a type of withdrawal from the previous 7 days induced sleep. The body is trying to regulate itself, but for my Dad this of course meant nothing. He wanted desperately to go back to sleep.
Friday:
Because the pressurised helmet was not working, they had to put my Dad back onto the original breathing aid, which meant putting this tube back through the nose and down the throat, by no means a pleasant experience. This was done in the morning. My Sister and I arrived at 14:00 that day, and of course an emotional visit as it was my Sisters first. Dad was awake, and although extremely confused, tears expressed his joy that Sarah had arrived. He had also managed to get some sleep which was quite evident.
As speaking was no longer an option, we resorted to pad and paper, which he has now mastered. This is where we understood exactly how he was doing. I don't think anyone other than those who have been through such an ordeal will understand it, but it's extremely hard to have to convince someone that they are alive and not dead, or that they are awake and not in a coma, or that they are sane and not mad. But these are all questions he was asking. Tough on a first visit for Sarah. I think slowly though, through that visit he started really understanding himself where he was, why and that it was a matter of recovery.
Saturday & Sunday:
These two days showed marked improvement. More so from the mental side of things. He is still confused at times, he will wake up in panic, but in general, when Sarah and I are there he is calm, and we just spend the visiting hours communication with him. It is now evident that he is very bored. We have been given special permission to have his laptop in there with him. He now has books, his iPod amongst other items to make him pass the time more easily. I think these are more for his comfort, because the effort it takes to use them is exhausting, but I think knowing they are there gives him that much more motivation perhaps.
All in all, although his lungs are healing very slowly, they are healing and it really is just a matter of time until they can move him up to his own room again. He now knows this. His wounds from the operation are in excellent shape according to the doctors. He is able to smile, and has not lost his humour. He also questions why the are no visitors… I have told him that I'm sure there will be, but he has to wait until he's out of intensive care.
He has asked us to pass on his love to all. He knows there are lots of people out there thinking of him, praying for him, and he appreciates it. He looks forward to seeing you when he is healthy, and is looking forward to visitors as well.
A special note; Don & Lucille, whom many of you might know, have been extremely supportive not only for my Dad but also for Sarah and Me. My Dad really appreciates everyone's support, but I think Don & Lucille in particular. He had requested that they visit, and we managed to squeeze them both in on our Sunday visit. I think this was something my father really appreciated, and Sarah & I were pleased they could make it too. Like I said though, visits are easier to organise when he's out of intensive care, so he knows that for the rest he’ll have to wait.
From Sarah and myself, we wish you all the best, enjoy the holidays, and thank you all for your support.
Christopher.
I take this opportunity, being perhaps one of only a handful of staff members left in the VIC on Christmas Eve with really not much work to be done at all, to send out a further update on my Dads situation as it is now.
I must first say that it has, since my last update, been somewhat of a rollercoaster ride for us, and I think that could be putting it lightly when viewing it from my Dads perspective. I think he will perhaps describe it as having been to hell and back, and perhaps more than just the once. A negative start to an update, but I can assure you that although I start negatively that in the big picture things are looking positive.
It's hard to sometimes put things in an understandable order, so I will try to keep it to the point. In my last update there were hopes of my Dad being out of intensive care by the time my sister arrives on Friday the 21st (1 or 2 days the doctors said, and the phrase '1 or 2 days' is becoming an all to familiar one to me now). He is still in intensive care. It has now been 13 days and from what the doctor told me yesterday he could still be in intensive care for a further '1 or 2 days…'.
Day by Day;
Thursday:
It was decided that my Dad should come off the breathing aid, unfortunately he was not ready, so they had to put him on some other type of breathing aid that pressurises the lungs, so when I saw him that afternoon, he looked very distressed. He had what appeared to be a special space helmet around his head that pumps oxygen and pressurises the lungs. With this contraption on is head it meant that because he no longer had the breathing tube through the nose and down the throat he was able to try speak. That was nice. He wasn't very clear, but with practice that would come. His words though where not words of happiness and joy, he was very distressed. Since his awakening on Tuesday he apparently had had no sleep. From one extreme to the other it would appear. For him, a nightmare, he looked exhausted, he was exhausted, but his body rejected sleep. This, according to the professionals is completely normal, it is a type of withdrawal from the previous 7 days induced sleep. The body is trying to regulate itself, but for my Dad this of course meant nothing. He wanted desperately to go back to sleep.
Friday:
Because the pressurised helmet was not working, they had to put my Dad back onto the original breathing aid, which meant putting this tube back through the nose and down the throat, by no means a pleasant experience. This was done in the morning. My Sister and I arrived at 14:00 that day, and of course an emotional visit as it was my Sisters first. Dad was awake, and although extremely confused, tears expressed his joy that Sarah had arrived. He had also managed to get some sleep which was quite evident.
As speaking was no longer an option, we resorted to pad and paper, which he has now mastered. This is where we understood exactly how he was doing. I don't think anyone other than those who have been through such an ordeal will understand it, but it's extremely hard to have to convince someone that they are alive and not dead, or that they are awake and not in a coma, or that they are sane and not mad. But these are all questions he was asking. Tough on a first visit for Sarah. I think slowly though, through that visit he started really understanding himself where he was, why and that it was a matter of recovery.
Saturday & Sunday:
These two days showed marked improvement. More so from the mental side of things. He is still confused at times, he will wake up in panic, but in general, when Sarah and I are there he is calm, and we just spend the visiting hours communication with him. It is now evident that he is very bored. We have been given special permission to have his laptop in there with him. He now has books, his iPod amongst other items to make him pass the time more easily. I think these are more for his comfort, because the effort it takes to use them is exhausting, but I think knowing they are there gives him that much more motivation perhaps.
All in all, although his lungs are healing very slowly, they are healing and it really is just a matter of time until they can move him up to his own room again. He now knows this. His wounds from the operation are in excellent shape according to the doctors. He is able to smile, and has not lost his humour. He also questions why the are no visitors… I have told him that I'm sure there will be, but he has to wait until he's out of intensive care.
He has asked us to pass on his love to all. He knows there are lots of people out there thinking of him, praying for him, and he appreciates it. He looks forward to seeing you when he is healthy, and is looking forward to visitors as well.
A special note; Don & Lucille, whom many of you might know, have been extremely supportive not only for my Dad but also for Sarah and Me. My Dad really appreciates everyone's support, but I think Don & Lucille in particular. He had requested that they visit, and we managed to squeeze them both in on our Sunday visit. I think this was something my father really appreciated, and Sarah & I were pleased they could make it too. Like I said though, visits are easier to organise when he's out of intensive care, so he knows that for the rest he’ll have to wait.
From Sarah and myself, we wish you all the best, enjoy the holidays, and thank you all for your support.
Christopher.
Wednesday, 19 December 2007
2007-12-19 — Newsletter from Chris to All
Dear All,
I take this opportunity to 'Reply All' to David F's 'Seasons Greetings', I didn't have the distribution list before hand, and so have only kept those people updated who have contacted me via E-mail or Phone.
I know that my Dad had kept all of you in the Cinema Club informed to as his development, so I hope most of you will be happy to receive a further update from me now, if there are others who are not on this list that you feel might want to know, please by all means forward this message onto them.
I think you all know that last Tuesday (11th) he underwent the 8-9 hour surgery (Originally scheduled for Wednesday but they pulled it forward a day…) to A) Remove the site of the tumour, and B) To have the lymph glands from the upper neck removed. The operation was a success. They also only removed one of his lymph glands (left side) so the scar my Dad kept talking about will be halved. With the operation being a success, the Professor informed me that the induced sleep he was in should really only last 2 or 3 days, depending on how fast his swelling goes down.
Unfortunately, my Dad had developed a lung infection & fever during that night, and this really slowed everything down. With the lung infection, weakening his lungs, he had to be put on a respirator to aid the breathing. It also slowed down the overall recovery and meant an increased time in the induced sleep. Over the next couple days the treatment for his lung infection was showing positive signs, and the doctors decided to reduce the amount of breathing aid over a couple days to get my Dad to start doing the work himself again. They also started reducing the medication keeping him in his sleep.
So, yesterday, Tuesday the 18th, after 168 Hours, or 7 Days of induced sleep, my Dad woke up. I'm sure he must have been as confused as can be, and perhaps a bit panicked. The nurses strapped his arms to the bed because they feared he might accidentally pull on some of the tubes that he is still connected to. This of course will add to his discomfort. When I appeared at 18:00 last night, he was awake with eyes wide open, and I think the sight of a familiar face sent him into what appeared to be a frenzy - of course he isn't able to speak, arms are strapped, so it just looked like he was in discomfort - but what it was, in my humble opinion, was sheer relief, followed by joy that a recognisable face was there to comfort him and reassure him that he had survived the operation and that family was around
He certainly was wanting to communicate, but with his tongue still being swollen, this won't be an option for him for the time being, but he is fully functional in the upstairs department, and responds to question with nodding the head for 'yes', and shaking the head for 'no'. Through this I established that he is in no pain, but is not as comfortable as he would like to be, especially with the arms being restricted. The nurses and doctors there take care of him very well, and keep him informed so he knows why he is strapped down, and I think with me echoing their words he feels reassured that everything is fine, and moving forward the way it should be.
There was an odd moment a couple minutes into the attempted hugs from my Dad (very difficult as he is laid down flat and 'shackled'), when he started shaking his left hand, without pause, and seemed to be shaking/pointing at his stomach. I asked; "What - pain in your stomach?", 'No' he shook his head. I asked: "Are you hungry", 'No' he shook his head. After a couple 'No's" I got the doctor. She informed me that he had been doing this all day, and that they too had asked the same questions to which he answered 'No' every time. Then it dawned upon me, he's trying to speak, that's not working… I asked: "Hey - do you want a pen?", to which his head started nodding 'YES' with a sign of relief on his face that we finally understood him :)
So, out came the pen and paper, but unfortunately we produced nothing more than Morse Code…(I can't read Morse Code) This is because he is flat on his back, arms strapped, and cannot see the paper - never the less, it's a great sign.
Just a note, since he was admitted into hospital for the operation, I've had many e-mails, and phone calls, people stopping me in corridors wishing him well, and every time a new name would contact me I added the names onto an every growing list that I carried on me, which I read out to him yesterday, it was my 'Well Wishers List'; I think he was overwhelmed, and if he could I'm sure he would have shed a tear - he really does appreciate all the support and thoughts going out to him, I think it's always nice to know that people are thinking of you when in times of hardship. Thank you all.
Today they will complete the final stages of stopping the breathing aid (assuming he reacts well to it) and after that it should be 2 or so days until he can leave intensive care, and reside in his old room on a normal ward. Hopefully by Friday - this is when my little Sister arrives from the UK, so it will be very nice for her if my Dad is able to at least communicate with pen and paper, and probably a lot nicer than having to visit the intensive care ward. Fingers crossed.
So, he's survived the operation, and all he can do now is rest and recover. He knows this will take some time, but I think he's ready for the next stage!
As far as visitors go, it is still restricted to family members, and whilst he can't speak I think he will most likely prefer it to stay with family visits until such time when he is ready. I'm sure that once he is in his room out of intensive care, and has regained some strength, he will be back online, or reachable through SMS. Until then, I remain the contact person for any questions you might have.
With best regards, wishing you all Happy Holidays and a Happy New Year!
Christopher
I take this opportunity to 'Reply All' to David F's 'Seasons Greetings', I didn't have the distribution list before hand, and so have only kept those people updated who have contacted me via E-mail or Phone.
I know that my Dad had kept all of you in the Cinema Club informed to as his development, so I hope most of you will be happy to receive a further update from me now, if there are others who are not on this list that you feel might want to know, please by all means forward this message onto them.
I think you all know that last Tuesday (11th) he underwent the 8-9 hour surgery (Originally scheduled for Wednesday but they pulled it forward a day…) to A) Remove the site of the tumour, and B) To have the lymph glands from the upper neck removed. The operation was a success. They also only removed one of his lymph glands (left side) so the scar my Dad kept talking about will be halved. With the operation being a success, the Professor informed me that the induced sleep he was in should really only last 2 or 3 days, depending on how fast his swelling goes down.
Unfortunately, my Dad had developed a lung infection & fever during that night, and this really slowed everything down. With the lung infection, weakening his lungs, he had to be put on a respirator to aid the breathing. It also slowed down the overall recovery and meant an increased time in the induced sleep. Over the next couple days the treatment for his lung infection was showing positive signs, and the doctors decided to reduce the amount of breathing aid over a couple days to get my Dad to start doing the work himself again. They also started reducing the medication keeping him in his sleep.
So, yesterday, Tuesday the 18th, after 168 Hours, or 7 Days of induced sleep, my Dad woke up. I'm sure he must have been as confused as can be, and perhaps a bit panicked. The nurses strapped his arms to the bed because they feared he might accidentally pull on some of the tubes that he is still connected to. This of course will add to his discomfort. When I appeared at 18:00 last night, he was awake with eyes wide open, and I think the sight of a familiar face sent him into what appeared to be a frenzy - of course he isn't able to speak, arms are strapped, so it just looked like he was in discomfort - but what it was, in my humble opinion, was sheer relief, followed by joy that a recognisable face was there to comfort him and reassure him that he had survived the operation and that family was around
He certainly was wanting to communicate, but with his tongue still being swollen, this won't be an option for him for the time being, but he is fully functional in the upstairs department, and responds to question with nodding the head for 'yes', and shaking the head for 'no'. Through this I established that he is in no pain, but is not as comfortable as he would like to be, especially with the arms being restricted. The nurses and doctors there take care of him very well, and keep him informed so he knows why he is strapped down, and I think with me echoing their words he feels reassured that everything is fine, and moving forward the way it should be.
There was an odd moment a couple minutes into the attempted hugs from my Dad (very difficult as he is laid down flat and 'shackled'), when he started shaking his left hand, without pause, and seemed to be shaking/pointing at his stomach. I asked; "What - pain in your stomach?", 'No' he shook his head. I asked: "Are you hungry", 'No' he shook his head. After a couple 'No's" I got the doctor. She informed me that he had been doing this all day, and that they too had asked the same questions to which he answered 'No' every time. Then it dawned upon me, he's trying to speak, that's not working… I asked: "Hey - do you want a pen?", to which his head started nodding 'YES' with a sign of relief on his face that we finally understood him :)
So, out came the pen and paper, but unfortunately we produced nothing more than Morse Code…(I can't read Morse Code) This is because he is flat on his back, arms strapped, and cannot see the paper - never the less, it's a great sign.
Just a note, since he was admitted into hospital for the operation, I've had many e-mails, and phone calls, people stopping me in corridors wishing him well, and every time a new name would contact me I added the names onto an every growing list that I carried on me, which I read out to him yesterday, it was my 'Well Wishers List'; I think he was overwhelmed, and if he could I'm sure he would have shed a tear - he really does appreciate all the support and thoughts going out to him, I think it's always nice to know that people are thinking of you when in times of hardship. Thank you all.
Today they will complete the final stages of stopping the breathing aid (assuming he reacts well to it) and after that it should be 2 or so days until he can leave intensive care, and reside in his old room on a normal ward. Hopefully by Friday - this is when my little Sister arrives from the UK, so it will be very nice for her if my Dad is able to at least communicate with pen and paper, and probably a lot nicer than having to visit the intensive care ward. Fingers crossed.
So, he's survived the operation, and all he can do now is rest and recover. He knows this will take some time, but I think he's ready for the next stage!
As far as visitors go, it is still restricted to family members, and whilst he can't speak I think he will most likely prefer it to stay with family visits until such time when he is ready. I'm sure that once he is in his room out of intensive care, and has regained some strength, he will be back online, or reachable through SMS. Until then, I remain the contact person for any questions you might have.
With best regards, wishing you all Happy Holidays and a Happy New Year!
Christopher
Monday, 17 December 2007
2007-12-17 (approx) — Email from Chris to Sarah
This is an email sent by Chris (my son) to his sister warning her about what to expect when she came to Vienna for Christmas and to visit me. A friend was sent a copy and she sent it on to me about the time I got out of hospital. I was so touched by it that I include it here (with his permission).
Morning little Sister,
So, I'm back with an update on our old man. I went yesterday to visit between 18:00 - 19:00. It was definitely a weird experience being in intensive care. I was prepared in terms of Dad being swollen and what not, and so it wasn't so bad when I actually got there, of course seeing your Dad hooked up to countless machines all beeping and making noises while he is fast asleep can be emotional, but I held it together ;).
There are some things I need to make clear though so let me try and order this somehow. Basically Dad underwent surgery on the Tuesday. It was by no means a light operation. 8/9 hours comprising of 2 operations. 1 was to remove the area where the tumour was in his mouth, and the second to take out the lymph glands in the upper region of his neck. They did not take out both top lymph glands, but instead only the one on his left side where they found this speckle. There was actually a mini 3rd operation where they have taken skin/muscle from his left arm to replace it on either his neck or mouth - I'm not quite sure which. In terms of the operation(s) they went very smoothly, and the doctors are pleased with the result. According to everything they have told me, things are going how they should.
Now, just to make this point clear, cause I wasn't aware of it, but it seems logical now. When in intensive care, they keep you asleep. There is no waking up and then dozing off again, they keep you in a 'medically induced coma', a permanent sleep for your duration in intensive care. The reasons for this are that after the operation, especially the removal of his gland, there is swelling, and this is not comfortable, and probably painful and there's tubes and things that are doing jobs that require you to be asleep. So they keep you asleep until swelling is down, and until they think it is clear to wake you up. This is estimated to take about 2 or 3 days. When they decide to wake you up, they don't click their fingers mind, and then you're up, it takes a period of several days apparently, where they slowly reduce the drugs that keep you sleeping, so it's a slow process.
This being said, although it is most weird, and a very strange situation for us to be in - with Dad just being in a 'coma' - it is actually a good thing. Dad is sleeping. He is feeling no pain, and during these days in the 'coma' he is recovering, and when he does wake, those days will be behind him. So don't worry about the 'coma', or better said 'induced sleep'. It is better this way.
Like I said, 2 to 3 days this usually takes for swelling and what not, there was/is however a slight set back now. Dad has generally weak lungs, and what has happened is he has developed an infection. This is nothing to worry about, it is something that does happen, and is treatable, but the implications are that the process is slowed down, and the outcome of that - is a prolonged period in the 'induced sleep'. The doctor I was speaking with yesterday said that we should understand that this will most likely add another 5 days of induced sleep (might be more depending on how things develop). It sounds awful, but these people know what they are doing, and again, from Dads point of view he is sleeping, he is in no pain, and these extra days are days he doesn't have to deal with when awake. He is healing all the time.
I hope this is not worrying you, I know you'd rather be here than there, but there's nothing we can do but wait for the experts (and Dad) to do the best job they can. In all likely hood though, in fact I think it's almost a certainty, you need to know that Dad will not be able to come out on the 25th for this day visit that was an earlier option. I hope that by that time he will at least be awake. Visiting is not a problem, it is currently restricted to only family and limited times during the day, and a maximum of 2 people. So naturally I'll be there with you. Even on the days before Christmas.
Now, just an update from me when I was there last night, like I said above I was prepared for the encounter, and as it turned out it wasn't so bad. He still looks like Dad ;) and the swelling etc is not at all bad. The thing that catches your eye is just the sheer amount of machinery surrounding him. Computers and tubes and just and awful lot of noise. I always imagined it to be somewhat quieter, but there's just constant beeping and all sorts of noises. I did talk to him for a while, sent him all our love and well wishes from the many people who have been calling me and e-mailing me for updates so it will be interesting to see if he remembers any of it when he wakes. You have to speak a little louder though because of the noise. The doctors and staff there are friendly, and of course considerate to the fact that it's pretty emotional, so that's nice. He is being looked after well.
The results from the lymph gland will hopefully be with us next week, but to be honest, this is something we can deal with later, the main thing now, and for the next 3-4 weeks will be concentrating on Dads recovery.
I spoke with Uncle Michael last night, and he will be calling you this evening to have a friendly chat - he's been good on the phone! Mum will call as per usual on Sunday I believe :)
Oh yeah, I call the intensive care unit every morning just to find out how his night was, make sure that everything is still going the way it should, and in any case they have my number and mums number if there was ever to be anything that we should know.
Much Love, and looking forward to seeing you and Ben soon!
You can call anytime!
Chris
Morning little Sister,
So, I'm back with an update on our old man. I went yesterday to visit between 18:00 - 19:00. It was definitely a weird experience being in intensive care. I was prepared in terms of Dad being swollen and what not, and so it wasn't so bad when I actually got there, of course seeing your Dad hooked up to countless machines all beeping and making noises while he is fast asleep can be emotional, but I held it together ;).
There are some things I need to make clear though so let me try and order this somehow. Basically Dad underwent surgery on the Tuesday. It was by no means a light operation. 8/9 hours comprising of 2 operations. 1 was to remove the area where the tumour was in his mouth, and the second to take out the lymph glands in the upper region of his neck. They did not take out both top lymph glands, but instead only the one on his left side where they found this speckle. There was actually a mini 3rd operation where they have taken skin/muscle from his left arm to replace it on either his neck or mouth - I'm not quite sure which. In terms of the operation(s) they went very smoothly, and the doctors are pleased with the result. According to everything they have told me, things are going how they should.
Now, just to make this point clear, cause I wasn't aware of it, but it seems logical now. When in intensive care, they keep you asleep. There is no waking up and then dozing off again, they keep you in a 'medically induced coma', a permanent sleep for your duration in intensive care. The reasons for this are that after the operation, especially the removal of his gland, there is swelling, and this is not comfortable, and probably painful and there's tubes and things that are doing jobs that require you to be asleep. So they keep you asleep until swelling is down, and until they think it is clear to wake you up. This is estimated to take about 2 or 3 days. When they decide to wake you up, they don't click their fingers mind, and then you're up, it takes a period of several days apparently, where they slowly reduce the drugs that keep you sleeping, so it's a slow process.
This being said, although it is most weird, and a very strange situation for us to be in - with Dad just being in a 'coma' - it is actually a good thing. Dad is sleeping. He is feeling no pain, and during these days in the 'coma' he is recovering, and when he does wake, those days will be behind him. So don't worry about the 'coma', or better said 'induced sleep'. It is better this way.
Like I said, 2 to 3 days this usually takes for swelling and what not, there was/is however a slight set back now. Dad has generally weak lungs, and what has happened is he has developed an infection. This is nothing to worry about, it is something that does happen, and is treatable, but the implications are that the process is slowed down, and the outcome of that - is a prolonged period in the 'induced sleep'. The doctor I was speaking with yesterday said that we should understand that this will most likely add another 5 days of induced sleep (might be more depending on how things develop). It sounds awful, but these people know what they are doing, and again, from Dads point of view he is sleeping, he is in no pain, and these extra days are days he doesn't have to deal with when awake. He is healing all the time.
I hope this is not worrying you, I know you'd rather be here than there, but there's nothing we can do but wait for the experts (and Dad) to do the best job they can. In all likely hood though, in fact I think it's almost a certainty, you need to know that Dad will not be able to come out on the 25th for this day visit that was an earlier option. I hope that by that time he will at least be awake. Visiting is not a problem, it is currently restricted to only family and limited times during the day, and a maximum of 2 people. So naturally I'll be there with you. Even on the days before Christmas.
Now, just an update from me when I was there last night, like I said above I was prepared for the encounter, and as it turned out it wasn't so bad. He still looks like Dad ;) and the swelling etc is not at all bad. The thing that catches your eye is just the sheer amount of machinery surrounding him. Computers and tubes and just and awful lot of noise. I always imagined it to be somewhat quieter, but there's just constant beeping and all sorts of noises. I did talk to him for a while, sent him all our love and well wishes from the many people who have been calling me and e-mailing me for updates so it will be interesting to see if he remembers any of it when he wakes. You have to speak a little louder though because of the noise. The doctors and staff there are friendly, and of course considerate to the fact that it's pretty emotional, so that's nice. He is being looked after well.
The results from the lymph gland will hopefully be with us next week, but to be honest, this is something we can deal with later, the main thing now, and for the next 3-4 weeks will be concentrating on Dads recovery.
I spoke with Uncle Michael last night, and he will be calling you this evening to have a friendly chat - he's been good on the phone! Mum will call as per usual on Sunday I believe :)
Oh yeah, I call the intensive care unit every morning just to find out how his night was, make sure that everything is still going the way it should, and in any case they have my number and mums number if there was ever to be anything that we should know.
Much Love, and looking forward to seeing you and Ben soon!
You can call anytime!
Chris
Tuesday, 11 December 2007
2007-12-11 — Calendar entry – the Operation
The operation was scheduled for about 8:00 in the morning.
I remember being wheeled into this enormous waiting room – there must have been 30 odd people each in their own bed all parked near each other and all, or almost all, with drips and things connected. The individual anaesthetists came and chatted to their specific patients and shortly after that they were wheeled through one of two (I think) large doors.
I was about last. When it came to my turn I remember just after the doors I was transferred onto a different bed and wheeled into a new, but very small waiting room. And to be honest I don't remember anything else
Monday, 10 December 2007
2007-12-10 — Newsletter – an even shorter note
Dear All
Am now checked in to my room (Station 18D (Green) room 2).
The main news is that the operation has been pushed forward to tomorrow. Which is good as there is already going to be enough waiting about today.
Chris will be phoned after it is over, so he will have the latest news. The ward will presumably also have information. I will be back on the ward one or two days after the operation, all things being well
Filled in a million forms, had talks with anaesthetists and ordinary doctors, have given blood, and have had my mouth shown to a group of 20 students, so things are happening.
love to you all
David
Am now checked in to my room (Station 18D (Green) room 2).
The main news is that the operation has been pushed forward to tomorrow. Which is good as there is already going to be enough waiting about today.
Chris will be phoned after it is over, so he will have the latest news. The ward will presumably also have information. I will be back on the ward one or two days after the operation, all things being well
Filled in a million forms, had talks with anaesthetists and ordinary doctors, have given blood, and have had my mouth shown to a group of 20 students, so things are happening.
love to you all
David
Wednesday, 5 December 2007
2007-12-05 — Newsletter – A short note
Dear All
Just a short note to say that the tests etc show me to be in good shape and the operation will go ahead on Wednesday 12th December. I have to go into hospital on the Monday (to rest they said) and will be in hospital for about 3 weeks.
The operation will apparently last 8 to 9 hours — a long time for a 64 year-old surgeon to work you'd think — but they assure me I'll be asleep for it all.
I will have email in hospital but might not be too active on that front for a while. Right now am feeling a bit snowed under with things that need to be done before Xmas, and so take this opportunity to wish you all a Merry Christmas and a Happy New Year.
Your well-wishes and prayers have meant a lot to me over the last few months and I feel confidant that I will be again on top of the world in 2008 (I've already lost 13 very much unwanted kilos — about 29 lbs for you imperial types, and will soon apparently have a dashing looking scar on my throat to enhance my looks).
For those of you in Vienna, don't forget the Bazaar this Saturday at the Austria Center. I will be performing my last public functions of the year then (official photographer and tombola clerk) and you can even buy a poster (called "Faces") featuring some of my pictures from last year. All profits from the Bazaar go to children's charities
love to you all
David
Just a short note to say that the tests etc show me to be in good shape and the operation will go ahead on Wednesday 12th December. I have to go into hospital on the Monday (to rest they said) and will be in hospital for about 3 weeks.
The operation will apparently last 8 to 9 hours — a long time for a 64 year-old surgeon to work you'd think — but they assure me I'll be asleep for it all.
I will have email in hospital but might not be too active on that front for a while. Right now am feeling a bit snowed under with things that need to be done before Xmas, and so take this opportunity to wish you all a Merry Christmas and a Happy New Year.
Your well-wishes and prayers have meant a lot to me over the last few months and I feel confidant that I will be again on top of the world in 2008 (I've already lost 13 very much unwanted kilos — about 29 lbs for you imperial types, and will soon apparently have a dashing looking scar on my throat to enhance my looks).
For those of you in Vienna, don't forget the Bazaar this Saturday at the Austria Center. I will be performing my last public functions of the year then (official photographer and tombola clerk) and you can even buy a poster (called "Faces") featuring some of my pictures from last year. All profits from the Bazaar go to children's charities
love to you all
David
Thursday, 29 November 2007
2007-11-29 — Newsletter — “News from the Nosefeeder”
Dear All
It's a long time since I wrote one of these group letters and thought you deserve an update. Those of you who I meet or talk with more regularly can just ignore it.
The big problem last time I wrote were the ulcers and so on in my mouth and also the disturbed nights. The good news is that things are very much better on both these fronts. Most of the sores are gone (a few isolated ones remain to grumble about). My throat is now very sore (this is a new one to replace the other problem!) but seems to be slowly getting better. My nights are very much better. Perhaps being woken 2 or 3 times instead of the 8 to 10 of before. I still need one or two day time naps but this is no problem.
I have much more energy and am getting things done. I get out more and am back to driving. With one exception, I am in really good shape.
The exception is feeding. I am still on the drip feed — this was necessary until very recently but perhaps is not needed now. But I seem to have a mental aversion to the food I try. The extreme dryness of my mouth is a factor in this — some foods are impossible — but it is also a kind of security thing. I am ok with the drip and seem averse to change! Anyway am working on this (today am cooking a minestrone and also a chicken soup for the freezer to try out) .
In general I am optimistic and quite happy but at times the length of this process does get me down. It has been almost 3 months I think — certainly 2 months since I last ate properly — and it is never ending. But I'm able to shake these times off as I really am so much better and life is very tolerable.
Tomorrow I go for tests (extracting blood, taking the piss, and X-raying) and on Wednesday (5th Dec) the final decision will be made as whether to operate on the 12th or to postpone a while. Will let you know what the decision is. Part of me wants to get it over and part would like to have Christmas with the family before I lose teeth and have all the other indignities performed on me!
Beautiful weather here in Vienna, cold but blue skies — life is good
love to all of you
David
It's a long time since I wrote one of these group letters and thought you deserve an update. Those of you who I meet or talk with more regularly can just ignore it.
The big problem last time I wrote were the ulcers and so on in my mouth and also the disturbed nights. The good news is that things are very much better on both these fronts. Most of the sores are gone (a few isolated ones remain to grumble about). My throat is now very sore (this is a new one to replace the other problem!) but seems to be slowly getting better. My nights are very much better. Perhaps being woken 2 or 3 times instead of the 8 to 10 of before. I still need one or two day time naps but this is no problem.
I have much more energy and am getting things done. I get out more and am back to driving. With one exception, I am in really good shape.
The exception is feeding. I am still on the drip feed — this was necessary until very recently but perhaps is not needed now. But I seem to have a mental aversion to the food I try. The extreme dryness of my mouth is a factor in this — some foods are impossible — but it is also a kind of security thing. I am ok with the drip and seem averse to change! Anyway am working on this (today am cooking a minestrone and also a chicken soup for the freezer to try out) .
In general I am optimistic and quite happy but at times the length of this process does get me down. It has been almost 3 months I think — certainly 2 months since I last ate properly — and it is never ending. But I'm able to shake these times off as I really am so much better and life is very tolerable.
Tomorrow I go for tests (extracting blood, taking the piss, and X-raying) and on Wednesday (5th Dec) the final decision will be made as whether to operate on the 12th or to postpone a while. Will let you know what the decision is. Part of me wants to get it over and part would like to have Christmas with the family before I lose teeth and have all the other indignities performed on me!
Beautiful weather here in Vienna, cold but blue skies — life is good
love to all of you
David
Friday, 23 November 2007
2007-11-23 — Email extract
…
The operation is not scheduled until 12 December. End of next week I start have tests and X-rays to see I am fit for it (in particular for the anaesthetic) and the final decision is to be made on the 5th.
Still not eating except through the tube but things are very much better. Sleeping quite well now and the overall pain has gone. Just enough to make eating real food unpleasant though I can taste things properly which is a relief.
Needing to naps often in the day, usually 3 times for an hour or two which taken with now 10 hours at night means I have very short day.
…
David
The operation is not scheduled until 12 December. End of next week I start have tests and X-rays to see I am fit for it (in particular for the anaesthetic) and the final decision is to be made on the 5th.
Still not eating except through the tube but things are very much better. Sleeping quite well now and the overall pain has gone. Just enough to make eating real food unpleasant though I can taste things properly which is a relief.
Needing to naps often in the day, usually 3 times for an hour or two which taken with now 10 hours at night means I have very short day.
…
David
Sunday, 28 October 2007
2007-10-28 — Newsletter
Dear All
I am now at home with the radiation and chemo-therapy finished at last (finished two weeks ago). What has still not finished is the side effects from those two therapies. The theory was that I would be in hospital just for the first week of the 5 week treatment (the week with the chemo) and then would complete the therapy as an out patient. In reality the ulcers, sore and general nastiness that affected my mouth meant that I couldn't eat or drink and I got in a really bad state after my first week at home and so I returned to hospital for another 4 weeks or so to be on a drip feed and to also get imbalances in my blood sorted out
I'm still on the feed, though at home. My mouth is starting to heal and I think I will able to eat normally in a week or so. Should all go well then they will operate to remove the site of tumour on 4th December.
I said the site of the tumour because while the therapies did collateral damage, they also succeeded magnificently in disappearing the tumour! I am a 'good responder' apparently.
I still can't talk properly or at least not for long, but can get out and about and am generally in good spirits. Am not driving yet but living in Vienna this is not a big problem! Am planning getting back to work with my camera soon — my daily photo site had a full month's lack of addition but is starting up again though it is as yet just with photos taken before I was in hospital — am plotting how to afford a new (and expensive) camera as my Xmas present to myself so you can see I am definitely on the way to recovery
Many thanks for your good wishes
David
I am now at home with the radiation and chemo-therapy finished at last (finished two weeks ago). What has still not finished is the side effects from those two therapies. The theory was that I would be in hospital just for the first week of the 5 week treatment (the week with the chemo) and then would complete the therapy as an out patient. In reality the ulcers, sore and general nastiness that affected my mouth meant that I couldn't eat or drink and I got in a really bad state after my first week at home and so I returned to hospital for another 4 weeks or so to be on a drip feed and to also get imbalances in my blood sorted out
I'm still on the feed, though at home. My mouth is starting to heal and I think I will able to eat normally in a week or so. Should all go well then they will operate to remove the site of tumour on 4th December.
I said the site of the tumour because while the therapies did collateral damage, they also succeeded magnificently in disappearing the tumour! I am a 'good responder' apparently.
I still can't talk properly or at least not for long, but can get out and about and am generally in good spirits. Am not driving yet but living in Vienna this is not a big problem! Am planning getting back to work with my camera soon — my daily photo site had a full month's lack of addition but is starting up again though it is as yet just with photos taken before I was in hospital — am plotting how to afford a new (and expensive) camera as my Xmas present to myself so you can see I am definitely on the way to recovery
Many thanks for your good wishes
David
Sunday, 21 October 2007
2007-10-21 — Newsletter
Dear All,
I got home on Thursday. To be honest I was a little dreading that — firstly the leaving of the security of the hospital seemed a bit scary (rather like the problem long-term prisoners have on being released) and secondly the actual getting home (I still feel quite weak) seemed an enormous task. Chris was a tower of strength for me in the second thing. Carried all the heavy stuff, was extremely solicitous and I felt really 'taken care' of. I am very, very lucky to have two children (young confident adults actually) who are such a support to me. Margaret had got my shopping in for me and so things went really well
It is a little more difficult being at home — the feeding through the tube takes time where I have to be stuck in one place (surrounded by phones, remotes, water, tissues all of which must be in reach for the nearly 2 hours it takes to get a bag of feed dripped) and so I have plan other things much more carefully — and there are more things to do than in hospital — pay bills, etc — thank God for the Internet!
My mouth is still the pits. Ulcers and sores still come and go. Nights are unpleasant — very broken with an hour sleep at a time usually the longest period I get.
But the good news — there is a delay in the side effects of the radiation and this should be coming to an end around the end of the week so things should get better soonish. Once I can eat normally — even if it is soup and mush at first the it all improves. And on the tumour side — at the last consultation the radiation doctor said it had gone. I asked "completely?" and she said she could prod around to confirm but that would be very painful so we decided to give with the visual result — the area will be removed by surgery anyway.
I am impatient, uncomfortable but optimistic and the light at the end of the tunnel cannot be far.
Of so much importance to me has been your prayers, well wishes, hospital visits, emails, phone calls which have been of great help to me — many, many thanks
I finish with a note of advice — If you have to spend time in an Austrian hospital bring a supply of soft toilet paper — the local issue tissue will wipe the smile of your face otherwise
love and best wishes
David
I got home on Thursday. To be honest I was a little dreading that — firstly the leaving of the security of the hospital seemed a bit scary (rather like the problem long-term prisoners have on being released) and secondly the actual getting home (I still feel quite weak) seemed an enormous task. Chris was a tower of strength for me in the second thing. Carried all the heavy stuff, was extremely solicitous and I felt really 'taken care' of. I am very, very lucky to have two children (young confident adults actually) who are such a support to me. Margaret had got my shopping in for me and so things went really well
It is a little more difficult being at home — the feeding through the tube takes time where I have to be stuck in one place (surrounded by phones, remotes, water, tissues all of which must be in reach for the nearly 2 hours it takes to get a bag of feed dripped) and so I have plan other things much more carefully — and there are more things to do than in hospital — pay bills, etc — thank God for the Internet!
My mouth is still the pits. Ulcers and sores still come and go. Nights are unpleasant — very broken with an hour sleep at a time usually the longest period I get.
But the good news — there is a delay in the side effects of the radiation and this should be coming to an end around the end of the week so things should get better soonish. Once I can eat normally — even if it is soup and mush at first the it all improves. And on the tumour side — at the last consultation the radiation doctor said it had gone. I asked "completely?" and she said she could prod around to confirm but that would be very painful so we decided to give with the visual result — the area will be removed by surgery anyway.
I am impatient, uncomfortable but optimistic and the light at the end of the tunnel cannot be far.
Of so much importance to me has been your prayers, well wishes, hospital visits, emails, phone calls which have been of great help to me — many, many thanks
I finish with a note of advice — If you have to spend time in an Austrian hospital bring a supply of soft toilet paper — the local issue tissue will wipe the smile of your face otherwise
love and best wishes
David
Thursday, 18 October 2007
2007-10-18 – Calendar entry – Back home
Well, at last, I'm home. Chris took time off work and came in the taxi with me. Needed help to carry the case, laptop and all the stuff I'd gathered over the last few weeks. He was a tower of strength.
From now until the operation I remain with the tube down my nose and 'feeding' off bags of 'food' which I get from the chemist. I setup a clamp on a bookshelf, moved an armchair near to it and settle myself three times a day for a slow leisurely 'meal'. I have to try to remember to bring phones and everything I might need and put them within reach as unlike the hospital where the bag was held in a stand on wheels, here at home it is more fixed.
Saturday, 13 October 2007
2007-10-13 — Newsletter
Dear All,
Well radiation is over — the last session was yesterday. Of course then last night a new crop of assorted ulcers and assorted nasties sprung up to celebrate! It will likely take a week or so for the last effects of radiation to filter through and then things will definitely improve. You can imagine how much I'm looking forward to that!
Seem to be losing hair — close inspection (which I try to avoid doing much) reveals some bald patches but they are at the moment hidden by hair from higher up falling over them. A sort of 'fall-over' rather than a 'comb-over' and with a little more success in concealment (he tries to persuade himself).
But of good news there is still plenty... if my red blood cell count improves by Wednesday (which they seem to think it will and of course tests will prove) then I will go home on Thursday. Even if I can't eat properly — I will do the tube feeding at home. It will be nice to have a comfy chair and all my old familiar things! And I've lost a few kilos (guessing about 7) which still leaves a comfortable reserve for winter and the operations but is a much more comfortable weight.
The tumour itself has shrunk considerably and encapsulated itself — at least that's what I understand (my medical German improves in leaps and bounds but still has a way to go) — but whatever, the doctors are always extremely pleased with its progress (regress?)
Am surrounded by love and friendship from family and friends and this has helped me much and although there are periods of discomfort still there is nothing that I can't handle at the moment and, as I said before, it will all improve soon.
Much love to all of you, my good friends
David
Well radiation is over — the last session was yesterday. Of course then last night a new crop of assorted ulcers and assorted nasties sprung up to celebrate! It will likely take a week or so for the last effects of radiation to filter through and then things will definitely improve. You can imagine how much I'm looking forward to that!
Seem to be losing hair — close inspection (which I try to avoid doing much) reveals some bald patches but they are at the moment hidden by hair from higher up falling over them. A sort of 'fall-over' rather than a 'comb-over' and with a little more success in concealment (he tries to persuade himself).
But of good news there is still plenty... if my red blood cell count improves by Wednesday (which they seem to think it will and of course tests will prove) then I will go home on Thursday. Even if I can't eat properly — I will do the tube feeding at home. It will be nice to have a comfy chair and all my old familiar things! And I've lost a few kilos (guessing about 7) which still leaves a comfortable reserve for winter and the operations but is a much more comfortable weight.
The tumour itself has shrunk considerably and encapsulated itself — at least that's what I understand (my medical German improves in leaps and bounds but still has a way to go) — but whatever, the doctors are always extremely pleased with its progress (regress?)
Am surrounded by love and friendship from family and friends and this has helped me much and although there are periods of discomfort still there is nothing that I can't handle at the moment and, as I said before, it will all improve soon.
Much love to all of you, my good friends
David
Friday, 12 October 2007
2007-10-12 — Calendar entry — last radiation session
Today is the last radiation session. Had setup a countdown spreadsheet on my laptop to highlight the remaining number of sessions — as if I need reminding — there is not much responsibility on me here and not a lot to concentrate on!
Depending on how the blood tests go I should be able to go home sometime next week.
Monday, 8 October 2007
2007-10-08 — Newsletter
Dear All,
Sorry to do this bulk mail to you all instead of individual emails, but I am a bit low on energy and there are so many of you good friends.
The good news is that I'm now in the last week of radiation. Just four more sessions to go. More good news is that the Professor peered into my mouth this morning and said the tumour was "fast weg" ("almost gone").
Not quite such good news is that although the ulcers etc (technical name mucositis) are less and less painful eating is still not possible so I remain on the feeding through nose tube method. My blood counts keep giving them problems too — first T-cells and white cells were low but now those have straightened out and the red cell count is too low. They are deciding in the next day whether I need transfusions or such like. None of this is dangerous but it might well delay my release from hospital. I am expecting to be in next week at least but it all depends
I now get very tired and lose concentration (so sleep a lot) — this is likely due to the red cells. But I'm in a safe place
Nothing is as bad as the time two weeks ago and all this I can handle without problem even though it is not pleasant.
I have had so many phone calls, emails and visits — it is so encouraging to me and really does help in keeping my spirits up. There are so many good people and I do so appreciate them all.
That's more words than the new slowed down David (whose beard has stopped growing and seems to be losing hair — though not yet noticeable except on my pillow) can normally manage in a day, so...
I'll end up with thanking you all again for your love and affection
David
Sorry to do this bulk mail to you all instead of individual emails, but I am a bit low on energy and there are so many of you good friends.
The good news is that I'm now in the last week of radiation. Just four more sessions to go. More good news is that the Professor peered into my mouth this morning and said the tumour was "fast weg" ("almost gone").
Not quite such good news is that although the ulcers etc (technical name mucositis) are less and less painful eating is still not possible so I remain on the feeding through nose tube method. My blood counts keep giving them problems too — first T-cells and white cells were low but now those have straightened out and the red cell count is too low. They are deciding in the next day whether I need transfusions or such like. None of this is dangerous but it might well delay my release from hospital. I am expecting to be in next week at least but it all depends
I now get very tired and lose concentration (so sleep a lot) — this is likely due to the red cells. But I'm in a safe place
Nothing is as bad as the time two weeks ago and all this I can handle without problem even though it is not pleasant.
I have had so many phone calls, emails and visits — it is so encouraging to me and really does help in keeping my spirits up. There are so many good people and I do so appreciate them all.
That's more words than the new slowed down David (whose beard has stopped growing and seems to be losing hair — though not yet noticeable except on my pillow) can normally manage in a day, so...
I'll end up with thanking you all again for your love and affection
David
Friday, 5 October 2007
2007-10-05 — Newsletter — to Vienna AA members
Dear All,
I've tried to find all the Vienna Fellowship email addresses in my address book — I know I don't have all and apologise to those I've missed.
I would like to thank you all so very much for the concern and love you have shown to me whilst I've been in hospital. Your phone calls , emails and visits have meant very much to me — yesterday the meeting was brought to me in my room and that was something very special
It is humbling and very comforting to realise that I am truly in a loving fellowship
The radiation treatment continues but will be finished on Friday next week. Then the mess in my mouth should start clearing and everything will improve. It is still too painful to eat and so I continue on this feeding tube through my nose direct into the stomach — which is really nowhere near as uncomfortable as I'd thought it might be.
Am very much looking forward to seeing you all soon in our natural habitat — a meeting room!
love and best wishes to you all
David
I've tried to find all the Vienna Fellowship email addresses in my address book — I know I don't have all and apologise to those I've missed.
I would like to thank you all so very much for the concern and love you have shown to me whilst I've been in hospital. Your phone calls , emails and visits have meant very much to me — yesterday the meeting was brought to me in my room and that was something very special
It is humbling and very comforting to realise that I am truly in a loving fellowship
The radiation treatment continues but will be finished on Friday next week. Then the mess in my mouth should start clearing and everything will improve. It is still too painful to eat and so I continue on this feeding tube through my nose direct into the stomach — which is really nowhere near as uncomfortable as I'd thought it might be.
Am very much looking forward to seeing you all soon in our natural habitat — a meeting room!
love and best wishes to you all
David
Wednesday, 3 October 2007
2007-10-03 — Newsletter
Dear All,
I can definitely see an end to this now. Plus the pain in my mouth is not as bad as last week. Still there and still unpleasant but definitely improved. Found I'm getting tired quite easily — there is no way I could have done any work at the same time as this. My blood cell counts are not good (low white cells) and so they are giving me injections to sort that out — nothing to worry about but needs attention. All of which confirms that I am better off in hospital.
My birthday was really pleasant. Strangely, considering the circumstances, one of the best I've had for a while. I got a number of cards. I had mentioned it was my birthday to the Professor (a nice old guy — probably younger than me thinking about it — though a bit stiff and formal) — and he had a little chat and unwound quite a lot. Then after 'lunch' he came back on his own with a beautiful bunch of flowers!
Then the family, Chris, Sarah and Margaret, all arrived. Chris bundled me into the loo to wait while they set up and then let me out. They'd tied a helium Happy Birthday balloon to the bed and stuck a big Happy Birthday banner across the window. They'd got a little bamboo tree in a pot and pinned 60 instant lottery tickets to it (which yielded prizes of €22)! And there were presents.
They'd put a lot of effort into it all and it was really nice. Chris and Margaret stayed for an hour and Sarah staying for another one (chess — I had to resign so the series is 2-1 to Sarah — honestly, children taking advantage of sick and elderly parents!). Sarah goes back early afternoon today so I won't see her — I'd thought it'd be a bit of a waste of money her coming over with me here but it proved delightful and I'm so glad she did.
Incidentally the radiation has stopped my beard hair growing (will be temporary apparently) so the morning ritual is shorter — and somewhat strange after so many years.
David
I can definitely see an end to this now. Plus the pain in my mouth is not as bad as last week. Still there and still unpleasant but definitely improved. Found I'm getting tired quite easily — there is no way I could have done any work at the same time as this. My blood cell counts are not good (low white cells) and so they are giving me injections to sort that out — nothing to worry about but needs attention. All of which confirms that I am better off in hospital.
My birthday was really pleasant. Strangely, considering the circumstances, one of the best I've had for a while. I got a number of cards. I had mentioned it was my birthday to the Professor (a nice old guy — probably younger than me thinking about it — though a bit stiff and formal) — and he had a little chat and unwound quite a lot. Then after 'lunch' he came back on his own with a beautiful bunch of flowers!
Then the family, Chris, Sarah and Margaret, all arrived. Chris bundled me into the loo to wait while they set up and then let me out. They'd tied a helium Happy Birthday balloon to the bed and stuck a big Happy Birthday banner across the window. They'd got a little bamboo tree in a pot and pinned 60 instant lottery tickets to it (which yielded prizes of €22)! And there were presents.
They'd put a lot of effort into it all and it was really nice. Chris and Margaret stayed for an hour and Sarah staying for another one (chess — I had to resign so the series is 2-1 to Sarah — honestly, children taking advantage of sick and elderly parents!). Sarah goes back early afternoon today so I won't see her — I'd thought it'd be a bit of a waste of money her coming over with me here but it proved delightful and I'm so glad she did.
Incidentally the radiation has stopped my beard hair growing (will be temporary apparently) so the morning ritual is shorter — and somewhat strange after so many years.
David
Tuesday, 2 October 2007
2007-10-02 — Calendar Entry — my Birthday
Well today is my 60th birthday. Am spending it in hospital which is not the way I planned it earlier in the year. Actually I didn't really have that many plans for an event so can't really grumble.
The family — Margaret, Chris and Sarah laid on a lovely surprise (details in the next post), and though I am not in ideal circumstances nor in an ideal place it was nevertheless one of the nicest birthdays I can remember.
Friday, 28 September 2007
2007-09-28 to 2007-10-03 — Calendar entry — Sarah visits Vienna
What is a shame is that Sarah is in Vienna and here I am in hospital and not able to see her as much as I'd like. She arrived on Friday (28th September) and leaves on the 3rd — the day after my birthday. When this booked it was thought that I'd be having out-patient radiation treatment — so we'd have been able to spend quite a bit of time together. As it is she visits but it isn't the same — though much better than nothing. We play chess — when I lose I console myself that firstly I taught her, and obviously did that well and secondly that I am a poorly man who is currently not at the height of my powers!
Wednesday, 26 September 2007
2007-09-26 — Newsletter — Tumour progress report
Dear All,
Was thinking about the last email I broadcast, wondering if I exaggerated for sympathy, but thought if anything it was all much worse.
This week I’m back in hospital, being fed through the nose and am starting to grumble about little things so things are definitely getting better!
Last week I could not see how it could be possible to get through the remaining treatment — this week I know I can do it with all the help I can get here.
So now the problem remains the pain in my mouth. One of the irritations is that it changes every day. Some symptoms persevere, some go away but always something new takes its place. Currently it’s my tongue bleeding.
A morphine based gel was made for me but it doesn’t seem that effective. I have to smear it on affected areas and that’s effort in itself unless I use their ‘patent’ mouthwash first.
This mouthwash has been with me from the first day — comes in enormous bottles when you get it on prescription for home. It is the only thing that seems to help. Problem is that you should take it between 3 and 9 times a day (everyone says something different) and I find it works for about an hour…
And last night’s (Tuesday’s) problem — diarrhoea. About 1:00 am and of course my underpants and pyjama bottoms affected. Not much but enough for me to plot ways of ‘getting away’ with it. I worried about getting new pyjamas, telling people — all good ‘early hours of the morning’ problems that seem immense, insoluble and very important and are of course nothing of the sort.
I was worried about this damn disease taking away my dignity, forgetting that only I can take it away.
David
Was thinking about the last email I broadcast, wondering if I exaggerated for sympathy, but thought if anything it was all much worse.
This week I’m back in hospital, being fed through the nose and am starting to grumble about little things so things are definitely getting better!
Last week I could not see how it could be possible to get through the remaining treatment — this week I know I can do it with all the help I can get here.
So now the problem remains the pain in my mouth. One of the irritations is that it changes every day. Some symptoms persevere, some go away but always something new takes its place. Currently it’s my tongue bleeding.
A morphine based gel was made for me but it doesn’t seem that effective. I have to smear it on affected areas and that’s effort in itself unless I use their ‘patent’ mouthwash first.
This mouthwash has been with me from the first day — comes in enormous bottles when you get it on prescription for home. It is the only thing that seems to help. Problem is that you should take it between 3 and 9 times a day (everyone says something different) and I find it works for about an hour…
And last night’s (Tuesday’s) problem — diarrhoea. About 1:00 am and of course my underpants and pyjama bottoms affected. Not much but enough for me to plot ways of ‘getting away’ with it. I worried about getting new pyjamas, telling people — all good ‘early hours of the morning’ problems that seem immense, insoluble and very important and are of course nothing of the sort.
I was worried about this damn disease taking away my dignity, forgetting that only I can take it away.
David
Monday, 24 September 2007
2007-09-24 — Newsletter — Back in hospital plus David’s unpleasant week
Dear All
Am sending a group letter as you're at different stages of the 'knowledge' (hence the detail) and all of you have been so kind with help and well wishes
I was released from hospital last Monday (17th) having completed the week of chemo and radiation together. There were minor side effects but from then it all went quickly downhill. I think I can safely say that this was been one of the worst — almost certainly the absolute worst weeks of my life. Every day the symptoms got worse. Ulcers sprung up in my mouth. Some going away after a day or so but always some new to take its place. Saturday it was difficult to speak, Sunday it actually hurt to do so. Sore throat came and stays. I registered the problem Thursday and got a useless painkiller...
I couldn't eat much at the beginning but by Sunday it was impossible to even drink.
I spent quite a lot of each day just huddled up in bed.
Anyway today I had an appointment with 'my Professor' at the hospital and he whisked me back in as in-patient. I was put on two drips (one in a vein, the other a tube down my nose into my stomach — I have an elephant trunk nose, albeit an thin elegant one). My evening meal was chocolate pasta down a tube if I heard right.
Anyway I am really happy to be under safe hands here. At the worst point I was considering close to begging them to take me back. This not needed as the Prof said immediately I must come in — at which point I burst into tears which shows how far from the normal Strong-Silent-David you all know I'd gone
I'd hoped this would happen and so had made piles and lists for Margaret (for those who don't know of her, she is my ex-wife who lives in the same block of flats and who has been an enormous help throughout all this) for packing and Chris (son and another tower of strength) brought it all in tonight — including my laptop hence this message.
A pain specialist has been to see me and I'm getting a morphine based paste to use.
The Prof says that reaction varies from virtual none to extreme like mine. Those who have the least reaction have the downside that the tumour also ignores it. Mine tumour has apparently got significantly smaller.
So the radiation goes on (my blood work has gone haywire and there is a small chance this may make them stop the treatment which they are really hoping not to have to do) but I stay as an in-patient.
I still have the pain but the infusions and the fact I can now just press a button for help has improved my spirits greatly.
Many thanks to all of you for the help you given me with all your thoughts and prayers and emails of support
David
Monday, 17 September 2007
2007-09-17 — Calendar entry — I go home
As expected I was sent home today after the radiation session was done. So for the next four weeks the plan is that I come in 5 days a week for radiation as an out-patient. Takes a bit over an hour travel time in each direction so this cramps my daily schedules somewhat — but then what else do I really have to do!
Sunday, 16 September 2007
2007-09-16 — Newsletter
Dear All,
Well the chemo part is over and it looks almost certain that I’ll be going home tomorrow after my regular (for the next 4 weeks) midday radiation session.
The last chemo bag (there were a total of five 500 ml bags) finished about 15:00 Saturday. It should have been earlier but the drip feed machine was inaccurate. And of course I calculated it all and made a spreadsheet to chart progress — which the doctors and nurses ignored of course. [It was set to 24 ml per hour but was actually operating at about 19 — anyway end of geek stuff, but when there is not that much to do it is easy to get obsessed].
So I was free of the bag and trolley and could go and buy edible food from the lobby and could bring up yoghurts and things.
The problems have been with side effects — the chemo gives me nausea spells which are not too bad and should reduce now. But the radiation is hurting the inside of my mouth — it is very dry as saliva glands react faster to the radiation than the tumour and on Friday I got an ulcer and today my tongue is red and sore. This is all unpleasant — it is not an extreme problem and I can put up with it but it makes it difficult to eat much of the stuff they bring — fairly dry bread, schnitzels, vinegary salads. So eating has been difficult but when I’m home I’m going to do pasta with ‘gentle’ sauces — so that problem should be minimised.
They took blood samples yesterday and today (these are the deciding factor in whether I can go home Monday) and the duty doctors said the results were excellent so they it almost certain for Monday but the final decision is made by the Professor! But they removed the catheter thing with all its dangling tap things (3 of them) from under my collar bone this morning. That was done by the two young female identical twin doctors who work on the ward.
So, anyway the chemo is over and this hospital stay nearly gone. To come is 4 more weeks of radiation, 8 weeks of recovery from that and then the operation. The operation will be bigger than I originally understood — they remove the upper set of lymph glands in my throat (the Professor made a ‘cutting my throat’ gesture to indicate how they will do this). If those lymph glands are clean then that is it, but if there is anything malignant then they operate a second time to remove the lower set of lymph glands. There is apparently a microscopic ‘fleck’ visibly on the scans and so the upper glands are removed and it will be analysed.
Had one bout of disbelief last night — a “how can this be happening to me” experience but otherwise am in good morale considering and will be a lot better when I get home! It is not that comfortable here and I miss my comfy things!
David
Well the chemo part is over and it looks almost certain that I’ll be going home tomorrow after my regular (for the next 4 weeks) midday radiation session.
The last chemo bag (there were a total of five 500 ml bags) finished about 15:00 Saturday. It should have been earlier but the drip feed machine was inaccurate. And of course I calculated it all and made a spreadsheet to chart progress — which the doctors and nurses ignored of course. [It was set to 24 ml per hour but was actually operating at about 19 — anyway end of geek stuff, but when there is not that much to do it is easy to get obsessed].
So I was free of the bag and trolley and could go and buy edible food from the lobby and could bring up yoghurts and things.
The problems have been with side effects — the chemo gives me nausea spells which are not too bad and should reduce now. But the radiation is hurting the inside of my mouth — it is very dry as saliva glands react faster to the radiation than the tumour and on Friday I got an ulcer and today my tongue is red and sore. This is all unpleasant — it is not an extreme problem and I can put up with it but it makes it difficult to eat much of the stuff they bring — fairly dry bread, schnitzels, vinegary salads. So eating has been difficult but when I’m home I’m going to do pasta with ‘gentle’ sauces — so that problem should be minimised.
They took blood samples yesterday and today (these are the deciding factor in whether I can go home Monday) and the duty doctors said the results were excellent so they it almost certain for Monday but the final decision is made by the Professor! But they removed the catheter thing with all its dangling tap things (3 of them) from under my collar bone this morning. That was done by the two young female identical twin doctors who work on the ward.
So, anyway the chemo is over and this hospital stay nearly gone. To come is 4 more weeks of radiation, 8 weeks of recovery from that and then the operation. The operation will be bigger than I originally understood — they remove the upper set of lymph glands in my throat (the Professor made a ‘cutting my throat’ gesture to indicate how they will do this). If those lymph glands are clean then that is it, but if there is anything malignant then they operate a second time to remove the lower set of lymph glands. There is apparently a microscopic ‘fleck’ visibly on the scans and so the upper glands are removed and it will be analysed.
Had one bout of disbelief last night — a “how can this be happening to me” experience but otherwise am in good morale considering and will be a lot better when I get home! It is not that comfortable here and I miss my comfy things!
David
Tuesday, 11 September 2007
2007-09-11 — Newsletter — Tumour progress report
Dear All,
The short news is that the tumour has not spread anywhere else and has not grown in the 5 weeks or so since it was detected. This is good as it means that the long-term prognosis is good
The long news follows. It is long basically because I've certainly got time on my hands!
Well the treatment has started. After they found the tumour there was a period of about 4 weeks of scans and tests. I've had 'nuclear' scans (a full body bone scan which shows my skeleton and which I want to copy for my web-site, and a 3D scan of my head which was extremely claustrophobic and unpleasant). They've done X-rays and CAT scans and blood tests galore. They made a mask (Hannibal Lector style) of my face and then did a simulation of the radiation with the mask and a CAT scan so as to be able to aim the radiation device accurately. The made teeth and gum shields for wearing during the radiation and also for use as an 'applicator' for a tooth gel to minimise tooth damage.
I was in hospital for two nights while they did an operation to tattoo all round the tumour so as to know where it was after it is shrunk by the radiation therapy. That was a full anaesthetic job.
There are several hospital departments involved (this is the main Vienna hospital) and everyone is nice and seems competent but their coordination is not so good so I ended up making much more visits than strictly necessary (at 90 minutes travel time each way).
Now I'm in the hospital for a week while they do the first week of treatment. This is radiation therapy (two bursts of about 40 seconds each) coupled with chemo-therapy. It is the chemo that is the reason that I have to be an in-patient — it's a 24 hour drip feed — removed only for an hour or so while I go for the radiation. There are only 5 days of this but I had to come in a sparrow's fart on the Sunday for a mini-operation to insert the catheter for the chemo under my collar bone and then when the five days of chemo are over they do blood tests and will hold me here a few days more until everything is settled down.
This whole approach is adopted mainly because it has a good success rate but also because it involves lower doses of chemo and radiation. So the side effects should not be too big. They expect none from the chemo but the radiation will cause dry mouth problems and maybe lethargy as it accumulates. I'm not likely to lose hair though my beard hair may stop growing for a few months
I'm feeling fine, though a little bored. But did bring enough books and my laptop — can get internet though rather slowly and can watch DVD's on the laptop so am OK for entertainment. Have my own room and the food is edible (though only just). Feeling restricted as I have to push the drip feed trolley thing around if I want to move more than a couple of feet. It is a powered thing so also have to plug it in — though it has a certain amount of battery power but essentially I'm fairly confined. The feeling of freedom when they disconnect me for a radiation session is amazing (gives me a chance to shower too and visit the hospital shops).
Overall I have confidence in the hospital but it is clear that their priorities are not the same as mine so there is a lot of waiting for things. I'm trying practising serenity and trying not to get exasperated over things which I will never be able to alter!
After this week is over there are four more weeks of radiation therapy (without the chemo) which is done as an out-patient (5 days a week). This should all shrink or even disappear the tumour. Then they wait 6 to 8 weeks and then operate to cut out the area where it was (plus a safety margin) — which is why they did the tattoo in the beginning. My first tattoo and nobody can see it and it will end up being cut out.
The operation timing depends on how I react to the radiation but looks like it will be early December. Might be sipping a liquidised Christmas turkey through a straw if there is a delay!
David
Monday, 10 September 2007
2009-09-10 — Calendar entry — first radiation, first chemo
So, my first day of therapy dawned.
My regular time slot for the radiation appointment was set at about 12:30 — once this time has been set you can't change it. As I remember I was offered this slot and an earlier — about 8:00 slot — which would be fine for while in hospital but not so good for the remaining 4 weeks as an out-patient.
You wait outside the radiation machine room and when your name is called you enter, put your teeth shields on (you carry those with you to and from the radiation) and you lie on the bed of the machine. They put your mask on (they keep this for you — not sure why they couldn't keep the teeth shields also). You also have a rubber sort of door-stopper type of thing to put between your teeth to keep your tongue down flat.
For me the radiation took a couple of minutes for each side — a total of about 5 minutes. However in reality aligning the mask normally took quite a lot longer. Towards the end of the therapy when my mouth was really dry and the teeth shields and the rubber stopper hurt my mouth it seemed much longer.
Anyway when I got back to the ward they started the chemo. The chemo is administrated through a sort of powered drip feed — I assume powered so that the amount of flow can be controlled. Because it is powered it has to be plugged into an electrical connection — though it has a smallish battery for in-between times. It is connected to the catheter thing under my collar bone. It should last about 20 hours giving a short gap each day when I go for the radiation and am also free FREE FREE!
Sunday, 9 September 2007
2007-09-09 — Calendar entry — back to 18-Dora, an operation
So this is a Sunday admission as the radiation and chemo treatment starts on Monday and they have to insert a catheter — not sure if that is what it's called — it's to be a 'permanent' IV just below my collar bone.
I had to arrive at the hospital early and not have anything to eat or drink. I spent a load of time just waiting in my room but at least this time I'd brought loads of books and my laptop computer with some DVDs.
It wasn't until about 16:30 that the thing was done. It was done under a local anaesthetic but done in an operating theatre. The area was sort of screened off and a sheet was over my face making it rather hot and a little claustrophobic.
I hate, really hate, this type of thing. I want to know what is happening and how long it is going to last. I also want to know how long it has being on — this is all a control thing — or rather a feeling that I am not in control — which always makes me nervous. Same thing that makes me dislike dental treatment — not pain but not knowing what is happening to me.
Anyway it probably took about 15 minutes though it seemed longer. I swear the assistant asked if he could do it and the surgeon let him —- but I probably invented that.
Friday, 7 September 2007
2007-09-07— Calendar entry — teeth moulds
I think they forgot to do this stage at an earlier appointment, but I came in so they could make moulds of my teeth — like the ones dentists make when you are going to have crowns made. It was done by Dr Nell, one the nice friendly doctors from the Cranio-, Maxillofacial and Oral Surgery (Mund-, Kiefer- und Gesichtschirurgie) Department.
The moulds are going to be used to make shields to protect my teeth from the radiation. I was to get to really hate those shields over the next few weeks.
Thursday, 6 September 2007
2007-09-06 — Calendar entry — Simulation
Today the radiation people did a simulation run. As far as I understand this is how it worked. I had the mask on and they had the CT scan in some form in the simulation machine. This machine sent a light (laser perhaps) beam out where on a real radiation machine the radiation particle beam would come. Using the position of the tumour from the CT scan they were able make sure that the beam would precisely aim at the tumour and as little as possible anywhere else.
This is how I think it happened but I didn't ask enough (difficult with the mask on) and my medical and technical German didn't help too much. It didn't seem that important to know all the details.
It seemed a funny combination of really high tech (CT data, lasers) and low tech (a red magic marker was used to mark on the mask where the beam should be focused).
It does show how incredibly technical so much medical treatment is these days.
Monday, 3 September 2007
2007-09-03 — Calendar entry — a mask is made
Back to the radiation people. First of all a mask was made. A sort of semi-transparent material was warmed up and moulded to my face. The mask has a hole where my mouth is but covers my nose and eyes— though it was possible to see through the mask even though it covered my eyes.
I was going to get to know my mask very well over the next month or two.
They then did another CT scan of my face region.
Tuesday, 28 August 2007
2007-08-28 — Calendar entry — the Radiation and Chemo Departments
I had two appointments at the General hospital today — one each with the Department of Radiation and the Chemo-Therapy Department.
I don't remember what happed with the Chemo therapy people and as far as I know I never saw them again.
For the radiation, I met with Dr Stromberger — a very pleasant lady doctor. She explained what would happen before the radiation started and also warned me if some of the possible side-effects.
Friday, 24 August 2007
2007-08-24 — Email Extract
…
Yes, got back at lunch time yesterday. Saw Professor Ewers when I came round after the anaesthetic — he remembered you. Most of the time though I see his number two — a friendly younger doctor.
So it went well though as soon as they wheeled me back to my room I immediately puked all over myself which was a bit embarrassing. Otherwise the principal problem was boredom. When I'm there for the week (will know the dates next week) I'm taking my laptop, DVDs, my IPod, books, anything! The food is crap too!
But the good news is that all the scans came up negative, meaning that it has not spread at all.
…
Yes, got back at lunch time yesterday. Saw Professor Ewers when I came round after the anaesthetic — he remembered you. Most of the time though I see his number two — a friendly younger doctor.
So it went well though as soon as they wheeled me back to my room I immediately puked all over myself which was a bit embarrassing. Otherwise the principal problem was boredom. When I'm there for the week (will know the dates next week) I'm taking my laptop, DVDs, my IPod, books, anything! The food is crap too!
But the good news is that all the scans came up negative, meaning that it has not spread at all.
…
2007-08-24 — Newsletter — the first newsletter (to the Cinema Club) — an extract
This is an extract from the first large distribution email I sent out. I run an English Cinema Club here in Vienna and wanted to share the news with the members (they'd have noticed my somewhat stiff face following the tattooing operation and this was also a way to get that out in the open.
…
We will continue with light-hearted movies (there's no real choice actually) with 'Death at a Funeral'. You can read more about it on our website
On a more serious note, a chance visit to the dentist has quickly led me into a treatment for a malignant tumour in my mouth. The chemo and radiation therapy starts in a week or so and the operation will be in December it seems. The prognosis is good as it was found small and early. The club will continue to operate but Helen might on occasion be your vote gatherer if I'm unable to attend on any particular event.
See you Tuesday
David
Thursday, 23 August 2007
2007-08-23 — Calendar entry — back home
I was released from the hospital around noon. The whole morning was spent just hanging around waiting for the release paperwork to get to me.
Wednesday, 22 August 2007
2007-08-22 — Calendar entry — My first tattoo
At about 8:00 in the morning I was wheeled off to the operation floor. I don't really remember much of this now — I remember the later operations more vividly. I do remember coming around in a large recovery room and the Professor telling me it had all gone fine.
This is my first tattoo — and they are going to cut it out later in the year.
When I got back to my room I was immediately sick all over myself. It is surprising how embarrassed one (or me anyway) can get when something like this happens in a hospital — I'm mumbling abject apologies and they've probably had this happen hundreds of times and know well it is just one of those things.
Sarah and Ben left some time early in the morning today.
Tuesday, 21 August 2007
2007-08-21 — Calendar entry — Admission to 18-Dora
I was asked to present myself at 12:00 at the Cranio-, Maxillofacial and Oral Surgery (Mund-, Kiefer- und Gesichtschirurgie) ward at the AKH in preparation for the tattooing of my mouth. This was ward 'D' on the 18th floor of the green tower known as ward '18 Dora' for short.
The patients I could see (not so many as I had a single room) mostly had big bandages wrapped their heads — a little scary, especially as I knew this was the type of thing that was to happen to me later on in my treatment.
I just had to hang around waiting for the odd doctor and the anaesthetist to come to me.
Thursday, 16 August 2007
2007-08-16 — Calendar entry —- more scans — I am asked to expire
This one was a simple one. A CT (Computed Tomography) scan of my head. Apart from discovering what a hot flush must be like when they inject an iodine solution into your blood stream CT scans are pretty routine and not all exciting. It was certainly not claustrophobic like the 'nuclear' scan.
Either because of my family name or because of my accent when speaking to the receptionist I was given an English language leaflet and form to fill out. It was a general purpose one that included instructions for lung CTs — was very interested to note that 'einatmen' (breathe-in) and 'ausatmen' (breathe-out) from the German version had been rendered as 'inspire' and 'expire'. It was a shame that my scan was of the head and so I missed the opportunity of a machine telling me to 'expire now'.
2007-08-16 to 2007-08-21 — Sarah and Ben visit Vienna
Absolutely nothing to do with tumours and the like, but my daughter Sarah and her boyfriend Ben arrived for a few short visit. It is always a delight to see Sarah — Ben too. Their visit slotted just nicely in between my various activities at the AKH.
Monday, 13 August 2007
2007-08-13 — Calendar entry — the Department of Nuclear Medicine
I thought I was scheduled for just a full body scan but it turned out to be that and a 3D scan of my head. For these I had to take a radio-active material (I can't remember now whether it was something I drank or something dripped in through a needle) and then wait for a couple of hours. I was allowed to wander around the hospital but asked not to leave it.
When the time was up they did the full body scan. When it was over I saw the picture — a really cool picture of my skeleton. I later asked for a copy of the picture — they seemed dubious about this and I never did get it, but it would have been really cool on my web-site. Not everyone gets to see their skeleton.
Then I had the head scan. This was the pits. I'm not particularly claustrophobic but I was close to panic in this. The device was a in the form of a equilateral triangle which rotated round my head. When the flat side of the triangle was directly above me it actually touched my nose — there was that little space inside. It lasted for 20 minutes or so (I'd been told this but there was no way to know how much time had elapsed and how much was left. It got very hot inside and I was about to pull myself out when it finally was over.
Wednesday, 8 August 2007
2007-08-08 — Calendar entry — the first visit to the AKH
My earlier appointment with the Professor was in his private surgery — this was in a very busy out-patient department of a very big and crowded hospital.
I had the obligatory waiting period — one thing I have learned over the last year is the patience and serenity to accept the long waiting periods that every medical appointment seems to involve.
Then I was called in to see Dr Schopper. He explained very thoroughly what they suggested be done. He told me that the Department had very good results with my type of tumour and had adopted a programme of chemo and radiation therapy followed by surgery. The first week of the therapy would be chemo and radiation together and would be done with me as an in-patient. The remaining four weeks of therapy would be radiation only and would be done as an out-patient.
The surgery would probably involve not only removing the tumour in the mouth but also one (the left) lymph nodes in my throat. Depending on the result of the operation it might be necessary to have a second operation to remove the lymph node on the other side.
Before all this there would be a et of tests and scans and also a small operation to tattoo around the tumour. This is because the radiation therapy could well actually make the tumour disappear and without the tattooed outline they would not be sure what to cut out!
For the major operation they would build a new floor to my mouth using a graft taken most probably from my wrist.
When he was sure that I understood and agreed to the treatment he outlined the whole thing swung into action. Blood tests were made (well the blood was taken for the tests), a mouth X-ray was made and I was sent to the photography department for photos of the inside of my mouth to be taken.
Lastly a set of appointments were made for further tests and scans.
Tuesday, 7 August 2007
2007-08-07 — Calendar entry — a phone call from the Professor
Just after lunch time and I was picking up my camera from the shop where it was being serviced when my mobile rang. The shop was noisy but the message was clear. I had a malignant tumour in my mouth. Professor Ewers apologised for giving me this type of news over the telephone but said that as he was on holiday he was not able to do the face to face discussion that he would normally do.
He had, however, arranged for me to see one of his deputies the next day at the Vienna General Hospital. Professor Ewers is the Head of the Department of Craniomaxillofacial and Oral Surgery in the hospital (www.meduniwien.ac.at/maxillo-facial/home.htm). In German it is the Universitätsklinik für Mund-, Kiefer- und Gesichtschirurgie.
The Vienna General Hospital (the Algemeines Krankenhaus der Stadt Wien or the AKH — pronounced Ah-Kah-Hah) is Austria's biggest hospital and is also a University teaching hospital.
When I got to the hospital I was to go to the seventh floor, find his secretary and she would see that I was taken care of.
Thursday, 2 August 2007
2007 08-02 — Calendar entry — a visit to the Professor
I had to wait quite a while to see the Professor and when I finally did he was everything I ever imagined a Professor to look like. Tall, balding and sporting a bow tie — there was nothing else he could be.
He looked inside my mouth and told me he would do a biopsy straight away. So, a local anaesthetic injection and he did a bit of scraping and cutting inside my mouth. It was actually rather unpleasant but then I've always hated everything dentist types have ever done to me.
He told me the results would be back from the laboratory in a few days and that he would contact me even though he would be on holiday.
Tuesday, 31 July 2007
2007-07-31 — Calendar entry — a visit to the Dentist
Another dental first! There was nothing wrong my teeth! But, and it was a big but, the dentist said there was a growth on the floor of my mouth. With the aid of a mirror he showed me a whitish coloured thing under my tongue. I'd had absolutely no idea there was anything there — no pain and nothing obstructing the normal working of my mouth.
The dentist wanted me to make an appointment as a matter of urgency with Professor Ewers whom he considered one of the top experts in this field in Vienna.
It turned out that the Professor was about to go on holiday for a couple of weeks but he was able to fit me in for an appointment in two day's time before he went.
Monday, 30 July 2007
2007-07-30 — Calendar entry — I make an appointment
I was feeling very virtuous on this day. I'd made appointments for a whole set of routine medical appointments (things like the regular lung CT scan, a prostate check and so on). There was a time when I'd continually put off doing things like this and I was feeling very 'grown-up'.
I suddenly decided to make a dentist appointment — to make it a full house. I'd not been to a dentist for almost five years, since I'd had all my remaining teeth capped. This was the first time in my life that I'd ever made a dentist appointment without being in absolute agony — first time when I'd ever made an appointment without anything being wrong as far as I could see.
The dentist was going on holiday but could fit me in the next day so long as this was just a check-up and not a request for urgent treatment.
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