I was scared to make the phone call today, but I girded up my loins and finally called the office of the Gastroenterologist who is my doctor and timidly asked the receptionist if my biopsy results had come back.
They had not!
I told her of my increasing anxiety about this and reassured her that good news or bad it was better to KNOW so you could deal with things than not and to live in dread!
Apparently that meant something to her because she seems to have made some calls and the results were clear.
This is not of course the be all or end all of everything - but at least I know that up to the blockage and from the inside of the oesophagus its a so far so good report.
At least it means that I can go into the procedure tomorrow with a bit more hope than I had yesterday.
Thought I would keep you all informed so you KNOW what going on!
Monday, April 28, 2008
Saturday, April 26, 2008
The last post? Well hardly - but I may be coming to an end
I am afraid that the issues that I joked about in the last few posts have turned serious.
When performing the Gastroscopy, my doctor apparently stopped the procedure and decided that my case was so serious that he needed to have the facilities of a major hospital at his beck and call rather than what was available in a Day Surgery at a private clinic.
The net result is I am booked in to have the same thing tried in Canberra Hospital on Tuesday next, this time with all of the additional imaging and emergency facilities available and standing by.
Considering what the doctor has told me I thoroughly approve of his conservative approach!
It appears that there is a serious blockage some 22 centimetres down my throat right where the junction of the remnant oesophagus and the stomach is. Some of you may recall that when the Ivor Lewis operation was performed it resulted in some 15 cm of my oesophagus being removed and around a third of the stomach being removed the remnants then being joined with staples.
What's more, with the removal of the oesophagus the action which enables all of YOU with healthy bodies to swallow your food, was also removed. All of you have a sort of unconscious action in your throats that massages the food down the food tube. This facility is NOT available to people like me. So we are continually having to find ways of swallowing and getting the food to go down. If there is a narrowing of the aperture of the food tube this becomes difficult if not impossible.
It appears that the gap at the join there is so narrow that the doctor was afraid of inserting a wire into the space without additional visual aids and tools being available to enable him to see what he was doing and so to avoid piercing tissues and causing a leak he stopped the procedure and re-scheduled it for the following week.
We all know the size of a piece of wire and - to be perfectly honest with you - it's not big! We are NOT talking about the transatlantic cable here.
That apparently is what is causing my inability to eat and to swallow - there is no place for the food to go down and into the stomach . Obviously a rupture around this are would be most serious considering that we are in the thorax and hence near the Bronchi. If its a choice between having a tube inserted into my stomach and absorbing food through that for the rest of my days or breathing I know what I would choose - and its not eating!
However there is a chance that perhaps a balloon inserted into the space can simply expand the area without rupturing the tissues and if that does not work then actually trying to insert a stent - hopefully a removable stent. Many apparently are not removable and can slip and do some interesting damage. Yet more risk.
For those of you who have not seen a stent there are many versions but all of them appear to be about 6-9 inches long and about 3/4 of an inch in diameter, this cylinder is somehow inserted into the area which needs to be expanded and then hopefully sits there and enables the person in whom it has been inserted to eat and swallow normally!
Just seeing some of the stents with a sort of wire mesh surrounded by some form of plastic covering does NOT give one a great feeling about what is going to happen - but since it beats dying I guess it's worth the try. If it's a removable stent then at least if it fails you still have the option of being fed directly into your stomach with a food tube! I have had one of those after the big operation and I have to tell you that not being able to eat, or drink or let anything pass the lips is psychologically terrible. What's worse is that the tube actually needs continual cleaning and maintenance and over time can become - yeah well let's not go there just yet - if needs must fine - but not without a struggle. They can become infected and frankly they can smell! That smell is NOT something I can forget and frankly its not something I would like to have again!
Meanwhile the biopsies were not available when we went to see the Dr the day after the aborted gastroscopy so I still have no idea what the results were. I was supposed to receive a phone call in the afternoon of Thursday but since it did not come and with everyone out for the long weekend I have no idea if the cancer has returned or not.
I can assure you that the mind is a terrible thing and I have wondered whether the receptionist who was going to ring me with the results - took one look and decided that this was a pleasure she would rather leave to the doctor or whether it just slipped from the agenda of what is a very busy practice. Suffice it to say that I am assuming the worst case scenario and dealing with it as anything short of this is likely to be a pleasant outcome.
The worst case scenario I can paint is that I am riddled with cancerous cells and that since there is no more possibility that I can actually get any more radio therapy the only option for treatment will be chemo therapy which means palliative use of the substances as the chemo does not usually work well just on it's own and especially in soft tissue cancers.
In other words I think I may well have "bought the farm" as no doubt some of our Anzacs would have said at some point - or was that an American phrase!
Since this possibility is something I have lived with now for over four years I can't say I would be surprised if this is the outcome. Annoyed that I will not have more time, angry about how I have used the time I have had so far and worried that it will all end in agonising pain which is NOT capable of being dealt with by the medication.
Frankly I would rather go quickly under anaesthetic than linger - but that apparently is not a choice I can make.
I will obviously let all of you know what the results prove to be - but for the time being let's assume the worst and then either not be surprised or pleasantly surprised if the possibilities are better than expected.
For those of you who have gallantly followed my scribbles up to this point - thank you and for those of you I have met again following the initial trials and tribulations - thank you for your concern and your continuing remembrance of something I must have done right at some point because you have been kind enough to greet me with a smile and very lovely inquiry as to my health and well being!
Well that's all for today and I expect that for many of you this will be more than enough!
Enjoy the long weekend!
When performing the Gastroscopy, my doctor apparently stopped the procedure and decided that my case was so serious that he needed to have the facilities of a major hospital at his beck and call rather than what was available in a Day Surgery at a private clinic.
The net result is I am booked in to have the same thing tried in Canberra Hospital on Tuesday next, this time with all of the additional imaging and emergency facilities available and standing by.
Considering what the doctor has told me I thoroughly approve of his conservative approach!
It appears that there is a serious blockage some 22 centimetres down my throat right where the junction of the remnant oesophagus and the stomach is. Some of you may recall that when the Ivor Lewis operation was performed it resulted in some 15 cm of my oesophagus being removed and around a third of the stomach being removed the remnants then being joined with staples.
What's more, with the removal of the oesophagus the action which enables all of YOU with healthy bodies to swallow your food, was also removed. All of you have a sort of unconscious action in your throats that massages the food down the food tube. This facility is NOT available to people like me. So we are continually having to find ways of swallowing and getting the food to go down. If there is a narrowing of the aperture of the food tube this becomes difficult if not impossible.
It appears that the gap at the join there is so narrow that the doctor was afraid of inserting a wire into the space without additional visual aids and tools being available to enable him to see what he was doing and so to avoid piercing tissues and causing a leak he stopped the procedure and re-scheduled it for the following week.
We all know the size of a piece of wire and - to be perfectly honest with you - it's not big! We are NOT talking about the transatlantic cable here.
That apparently is what is causing my inability to eat and to swallow - there is no place for the food to go down and into the stomach . Obviously a rupture around this are would be most serious considering that we are in the thorax and hence near the Bronchi. If its a choice between having a tube inserted into my stomach and absorbing food through that for the rest of my days or breathing I know what I would choose - and its not eating!
However there is a chance that perhaps a balloon inserted into the space can simply expand the area without rupturing the tissues and if that does not work then actually trying to insert a stent - hopefully a removable stent. Many apparently are not removable and can slip and do some interesting damage. Yet more risk.
For those of you who have not seen a stent there are many versions but all of them appear to be about 6-9 inches long and about 3/4 of an inch in diameter, this cylinder is somehow inserted into the area which needs to be expanded and then hopefully sits there and enables the person in whom it has been inserted to eat and swallow normally!
Just seeing some of the stents with a sort of wire mesh surrounded by some form of plastic covering does NOT give one a great feeling about what is going to happen - but since it beats dying I guess it's worth the try. If it's a removable stent then at least if it fails you still have the option of being fed directly into your stomach with a food tube! I have had one of those after the big operation and I have to tell you that not being able to eat, or drink or let anything pass the lips is psychologically terrible. What's worse is that the tube actually needs continual cleaning and maintenance and over time can become - yeah well let's not go there just yet - if needs must fine - but not without a struggle. They can become infected and frankly they can smell! That smell is NOT something I can forget and frankly its not something I would like to have again!
Meanwhile the biopsies were not available when we went to see the Dr the day after the aborted gastroscopy so I still have no idea what the results were. I was supposed to receive a phone call in the afternoon of Thursday but since it did not come and with everyone out for the long weekend I have no idea if the cancer has returned or not.
I can assure you that the mind is a terrible thing and I have wondered whether the receptionist who was going to ring me with the results - took one look and decided that this was a pleasure she would rather leave to the doctor or whether it just slipped from the agenda of what is a very busy practice. Suffice it to say that I am assuming the worst case scenario and dealing with it as anything short of this is likely to be a pleasant outcome.
The worst case scenario I can paint is that I am riddled with cancerous cells and that since there is no more possibility that I can actually get any more radio therapy the only option for treatment will be chemo therapy which means palliative use of the substances as the chemo does not usually work well just on it's own and especially in soft tissue cancers.
In other words I think I may well have "bought the farm" as no doubt some of our Anzacs would have said at some point - or was that an American phrase!
Since this possibility is something I have lived with now for over four years I can't say I would be surprised if this is the outcome. Annoyed that I will not have more time, angry about how I have used the time I have had so far and worried that it will all end in agonising pain which is NOT capable of being dealt with by the medication.
Frankly I would rather go quickly under anaesthetic than linger - but that apparently is not a choice I can make.
I will obviously let all of you know what the results prove to be - but for the time being let's assume the worst and then either not be surprised or pleasantly surprised if the possibilities are better than expected.
For those of you who have gallantly followed my scribbles up to this point - thank you and for those of you I have met again following the initial trials and tribulations - thank you for your concern and your continuing remembrance of something I must have done right at some point because you have been kind enough to greet me with a smile and very lovely inquiry as to my health and well being!
Well that's all for today and I expect that for many of you this will be more than enough!
Enjoy the long weekend!
Saturday, April 19, 2008
"Can the Quacks straighten you out?"
An interesting question which should be resolved - one way or another by COB Wednesday next.
I have always wanted to have some demonstrable proof that I am (or at least have been, indeed can be) straightened out!
I can think of many supervisors in the past who have had the view that straightening me out would be for my own good! Were I still at work this would no doubt finally satisfy them!
"Too little too late," I can hear some of them murmur!
I have always wanted to have some demonstrable proof that I am (or at least have been, indeed can be) straightened out!
I can think of many supervisors in the past who have had the view that straightening me out would be for my own good! Were I still at work this would no doubt finally satisfy them!
"Too little too late," I can hear some of them murmur!
Friday, April 18, 2008
Barium Swallow
Had the Barium Swallow today - a most interesting experience!
If the sneaky looks I was able to take while being scanned bear any resemblance to what the doctors will say when they present their report then I have a feeling I am not just heading for the toilet I may be becoming more like a toilet than I would wish!
There seems to be a kink in the remnant oesophagus where it joins the remnant stomach and this MAY explain why I have been having difficulties swallowing.
The thought that my insides may look and function like an S bend in a toilet may cause all of you momentary hysterical laughter, but it does nothing for me I can assure you!
Indeed I have to say that in the past I have always been a great supporter of the notion that you are what you eat - but of course if you eat nothing then . . .
I mean, COME ON, what did I ever do to deserve ending up with my insides resembling an S bend?
Er. . . . before you all rush into print to tell me the answer to that rhetorical question - the real question is whether this is the cause of the main problem or not and we will only find that out when the good doctor goes down my throat next week with the 'snake' (gastroscopy) to have a look and take samples of what he finds.
Yes yes, I know, you all got a belly laugh out of that too - after all what else would you expect to find in an S bend?
Who actually writes my lines? I need to have a talk to the fellow - he certainly seems to need a good talking to.
So for those of you who have always known that I might end up in the sewer now is the time to get your laughs - ha ha, HEE HEE or whatever!
Get it over with and just wish me luck with the plumber. The last thing I need is to have burst pipe down there - that would be REALLY messy!
I am now going to have a long chat with my script writer - I will have to straighten him out
(Oh no! Now I am doing it!)
If the sneaky looks I was able to take while being scanned bear any resemblance to what the doctors will say when they present their report then I have a feeling I am not just heading for the toilet I may be becoming more like a toilet than I would wish!
There seems to be a kink in the remnant oesophagus where it joins the remnant stomach and this MAY explain why I have been having difficulties swallowing.
The thought that my insides may look and function like an S bend in a toilet may cause all of you momentary hysterical laughter, but it does nothing for me I can assure you!
Indeed I have to say that in the past I have always been a great supporter of the notion that you are what you eat - but of course if you eat nothing then . . .
I mean, COME ON, what did I ever do to deserve ending up with my insides resembling an S bend?
Er. . . . before you all rush into print to tell me the answer to that rhetorical question - the real question is whether this is the cause of the main problem or not and we will only find that out when the good doctor goes down my throat next week with the 'snake' (gastroscopy) to have a look and take samples of what he finds.
Yes yes, I know, you all got a belly laugh out of that too - after all what else would you expect to find in an S bend?
Who actually writes my lines? I need to have a talk to the fellow - he certainly seems to need a good talking to.
So for those of you who have always known that I might end up in the sewer now is the time to get your laughs - ha ha, HEE HEE or whatever!
Get it over with and just wish me luck with the plumber. The last thing I need is to have burst pipe down there - that would be REALLY messy!
I am now going to have a long chat with my script writer - I will have to straighten him out
(Oh no! Now I am doing it!)
Thursday, April 10, 2008
News of the month
To those of my faithful readers who have been wondering whether I have simply packed up to head overseas for a warmer climate or simply packed it in I am afraid I have some simple news - NO I am not packing up and NO I have not packed it in!
My apologies for leaving you all hanging for weeks without commentary.
As many of you know I have had some difficulties with swallowing and with pain management for some time now. I have been receiving advice and assistance from a number of doctors and in spite of following the advice and taking the prescribed medication the overall results have been less than what I would have liked as far as the pain management has been concerned.
Still if that's the best that can be achieved then I will simply have to live with it!
As for the swallowing this has managed to get to a stage where I would like a more hands on look at what's going on so towards the end of this month I will be going for a procedure where once again the snake will be slid down my throat and we will have a look see. Of course I am petrified by the thought of what can be found but then again there is not much choice really and it's better to know than not.
So please have quiet prayer for me - or at least a mini cheer squad and wish me well for when that takes place.
I have spent what amount to sleepless nights working on some new ways to document my family's genealogy and this has been surprisingly successful. Some very interesting lessons have also been learned along the way.
For those who are interested I will be pursuing these themes in my regular bl0g and not here.
Meanwhile of course my contributions to other things has deteriorated to the point where I am ashamed of myself for having given in to pressures and avoided my responsibilities.
I am back though and ready for the fray once again!
I have had the opportunity to catch up with a few people and this has not been a great success because of the difficulties with the swallowing. NO ONE wants someone in their midst who suddenly chokes on a mouthful of food or drink and has to rush off to find a convenient lavatory!
Still - we have survived this too and I am grateful for those who have put up with me and made nice noises about it can't be helped etc.
Thank you.
I now want to avoid any further social commitments until I can get this thing sorted. So I hope people will be understanding and realise that it's not THEM I wish to avoid merely the embarrassment and the inconvenience for all concerned.
Well that's it for now - call me if you get desperate - my voice IS up to speaking on the phone!
My apologies for leaving you all hanging for weeks without commentary.
As many of you know I have had some difficulties with swallowing and with pain management for some time now. I have been receiving advice and assistance from a number of doctors and in spite of following the advice and taking the prescribed medication the overall results have been less than what I would have liked as far as the pain management has been concerned.
Still if that's the best that can be achieved then I will simply have to live with it!
As for the swallowing this has managed to get to a stage where I would like a more hands on look at what's going on so towards the end of this month I will be going for a procedure where once again the snake will be slid down my throat and we will have a look see. Of course I am petrified by the thought of what can be found but then again there is not much choice really and it's better to know than not.
So please have quiet prayer for me - or at least a mini cheer squad and wish me well for when that takes place.
I have spent what amount to sleepless nights working on some new ways to document my family's genealogy and this has been surprisingly successful. Some very interesting lessons have also been learned along the way.
For those who are interested I will be pursuing these themes in my regular bl0g and not here.
Meanwhile of course my contributions to other things has deteriorated to the point where I am ashamed of myself for having given in to pressures and avoided my responsibilities.
I am back though and ready for the fray once again!
I have had the opportunity to catch up with a few people and this has not been a great success because of the difficulties with the swallowing. NO ONE wants someone in their midst who suddenly chokes on a mouthful of food or drink and has to rush off to find a convenient lavatory!
Still - we have survived this too and I am grateful for those who have put up with me and made nice noises about it can't be helped etc.
Thank you.
I now want to avoid any further social commitments until I can get this thing sorted. So I hope people will be understanding and realise that it's not THEM I wish to avoid merely the embarrassment and the inconvenience for all concerned.
Well that's it for now - call me if you get desperate - my voice IS up to speaking on the phone!
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