When told you may have to do stretching exercises in case you have to kiss your derriere goodbye you can of course take a lesson from certain animals.Take this cow for example.
What elegance!
Monday, May 28, 2007
OH to be a COW!
When told you may have to do stretching exercises in case you have to kiss your derriere goodbye you can of course take a lesson from certain animals.Take this cow for example.
What elegance!
Sunday, May 27, 2007
Do YOU know what IPTAS is?
Interstate Patients Transport Assistance Scheme.
When you actually have to travel to Sydney from Canberra to get a PET scan or some other specialist service simply because the service does NOT exist in the ACT I wonder if you can actually get some assistance (financial that is) to get there?
Interestingly enough there is a thing called IPTAS which may or may not be well known among people if you have no idea about this form of assistance then perhaps you could have a look at http://www.health.act.gov.au/iptas
See if you are eligible and then unlike me you can be better informed about your rights and what you may be entitled to.
Why is it that no one tells you these things and you have to find out for yourself - AFTER the event is over!
Never mind - now all I need is another appointment with my specialist to see if I can obtain their agreement to filling in Part C of the form so that apart from the cost of the PET scan I can actually ask about defraying the cost of having to travel there!
When you actually have to travel to Sydney from Canberra to get a PET scan or some other specialist service simply because the service does NOT exist in the ACT I wonder if you can actually get some assistance (financial that is) to get there?
Interestingly enough there is a thing called IPTAS which may or may not be well known among people if you have no idea about this form of assistance then perhaps you could have a look at http://www.health.act.gov.au/iptas
See if you are eligible and then unlike me you can be better informed about your rights and what you may be entitled to.
Why is it that no one tells you these things and you have to find out for yourself - AFTER the event is over!
Never mind - now all I need is another appointment with my specialist to see if I can obtain their agreement to filling in Part C of the form so that apart from the cost of the PET scan I can actually ask about defraying the cost of having to travel there!
Friday, May 25, 2007
The mystery continues
We are back from Sydney and the PET scan is over.
Have had a brief chat with one of the oncologists from the team that has been looking after me in Canberra. She was very kind and rang me almost as soon as we got home and told me verbally that the results from the scan are a little unexpected.
The mass in the lung appears not to have absorbed the radioactive glucose - i.e. it is NOT hot while something really small does appear to be hot elsewhere.
I have asked for the report to be sent to me and I will also be asking for the pictures to be sent to me - after all - having paid for them I should be entitled to see them I guess!
Meanwhile I will need some time to consider what it all means and then have a more serious discussion with those who have been looking after me about it all.
I have no wish to discuss something I have not seen. It leaves me without the ability to ask questions about the subject (ME) that is under discussion.
I have no doubt that I am completely unable to understand and interpret a report or indeed the pictures, but where I am ignorant I can ask questions and where I do not understand I can ask for explanations.
Without seeing what others are looking at I am literally in the dark.
Meanwhile the fear and anxiety continue and the fact that even these pictures may not be definitive leaves me with the question which I have been asking all along - namely WHAT ELSE CAN IT BE?
In the old days there were things called case conferences where different people from different professional points of view got together to chew the fat about the "cases" or patients that were
in a treatment facility and this always meant that different points of view, different interpretations and different takes on the 'evidence' were all thrown into the ring and as one hypothesis was advanced about what something could be it was either challenged or refuted by someone else so that the group could whittle the possibilities into shape.
I wonder if these sort of things still go on or whether people are simply too busy in the hurly burly of the modern world?
Have had a brief chat with one of the oncologists from the team that has been looking after me in Canberra. She was very kind and rang me almost as soon as we got home and told me verbally that the results from the scan are a little unexpected.
The mass in the lung appears not to have absorbed the radioactive glucose - i.e. it is NOT hot while something really small does appear to be hot elsewhere.
I have asked for the report to be sent to me and I will also be asking for the pictures to be sent to me - after all - having paid for them I should be entitled to see them I guess!
Meanwhile I will need some time to consider what it all means and then have a more serious discussion with those who have been looking after me about it all.
I have no wish to discuss something I have not seen. It leaves me without the ability to ask questions about the subject (ME) that is under discussion.
I have no doubt that I am completely unable to understand and interpret a report or indeed the pictures, but where I am ignorant I can ask questions and where I do not understand I can ask for explanations.
Without seeing what others are looking at I am literally in the dark.
Meanwhile the fear and anxiety continue and the fact that even these pictures may not be definitive leaves me with the question which I have been asking all along - namely WHAT ELSE CAN IT BE?
In the old days there were things called case conferences where different people from different professional points of view got together to chew the fat about the "cases" or patients that were
in a treatment facility and this always meant that different points of view, different interpretations and different takes on the 'evidence' were all thrown into the ring and as one hypothesis was advanced about what something could be it was either challenged or refuted by someone else so that the group could whittle the possibilities into shape.
I wonder if these sort of things still go on or whether people are simply too busy in the hurly burly of the modern world?
Friday, May 18, 2007
The next "exciting" episode . . .
Managed to get some views from the other oncologist today who suggested some expensive, but possibly vital tests which may determine whether the first oncologist's assessment is the only answer.
I guess we are starting to ask the question - WHAT ELSE COULD IT BE?
Possibly a PET scan and/or an MRI could help to determine what is happening on the CT scans.
It is possible (or so I am told) that the scarring left by operations, pneumonia, and radiation treatment through the lungs could explain the vision that appears on the CT scan. It also could help to determine whether there has been any wider spread and so cast some more light on what if anything can be or needs to be done.
As and when this is done then there are still possibilities of other tests e.g. an attempt at actually getting some material from the locations where there appears to be a problem. That may assist people to actually analyse the material extracted and see what the story is under the microscope.
Given how much work has taken place on the right hand side of the body in my lifetime e.g. - rotator cuff injury, major operation to deal with the original appearance of the oesophageal cancer, subsequent operation on the lymph nodes for either metastases or original cancer not caught in the operation, vocal cord implant, arthritis etc etc it is certainly not as though people were starting with a mint new corpus.
The question is - or at least in my view ought to be - given all the work done on this area of the body what else could the CT scan be showing?
I accept the reality that one explanation is that the cancer has spread and/or returned and that it is a matter of time.
What I do NOT want to happen is that we leap to this explanation as the only one, because it is the most obvious one, and then base treatment and prognosis decisions on that basis.
If there is any meaning to the phrase "informed consent" then I would like to be informed a lot more than I am at present.
I would like to hope that medical science has progressed to the stage where while clutching one explanation (the most obvious one) to protect it from harm and the fear of it being lost sight of, other possible explanations are sought for the symptoms and then either eliminated through testing or (and this is the BIG "or") if they cannot be eliminated considering whether the original diagnosis and/or prognosis can still be sustained in the light of new evidence and/or assessment.
Meanwhile I am of course making inquiries about doctors elsewhere in Australia who might be able and willing to consider the evidence (such as it is) and consider the situation from a perspective that is not coloured by previous knowledge of the 'case' and so perhaps offer a different view about what is in the pictures to date, the blood tests etc and/or may be willing to suggest other tests etc that could be done to definitely specify what else can and/or should be done.
Given the busy lives of doctors these days and extraordinary pressure under which they appear to operate this may be a 'big ask', however we will see what is possible.
For those former work colleagues who have already rung me or met with me in passing at the local shopping mall and/or who want to get together for a meal - thank you!
If you hear me being hesitant in accepting your kind invitations to get together and firm up a date - PLEASE do not take this the wrong way.
I will do my best to be available, however if someone offers me a choice between having a meal or having a test that may shed light on what is going on . . .
I guess we are starting to ask the question - WHAT ELSE COULD IT BE?
Possibly a PET scan and/or an MRI could help to determine what is happening on the CT scans.
It is possible (or so I am told) that the scarring left by operations, pneumonia, and radiation treatment through the lungs could explain the vision that appears on the CT scan. It also could help to determine whether there has been any wider spread and so cast some more light on what if anything can be or needs to be done.
As and when this is done then there are still possibilities of other tests e.g. an attempt at actually getting some material from the locations where there appears to be a problem. That may assist people to actually analyse the material extracted and see what the story is under the microscope.
Given how much work has taken place on the right hand side of the body in my lifetime e.g. - rotator cuff injury, major operation to deal with the original appearance of the oesophageal cancer, subsequent operation on the lymph nodes for either metastases or original cancer not caught in the operation, vocal cord implant, arthritis etc etc it is certainly not as though people were starting with a mint new corpus.
The question is - or at least in my view ought to be - given all the work done on this area of the body what else could the CT scan be showing?
I accept the reality that one explanation is that the cancer has spread and/or returned and that it is a matter of time.
What I do NOT want to happen is that we leap to this explanation as the only one, because it is the most obvious one, and then base treatment and prognosis decisions on that basis.
If there is any meaning to the phrase "informed consent" then I would like to be informed a lot more than I am at present.
I would like to hope that medical science has progressed to the stage where while clutching one explanation (the most obvious one) to protect it from harm and the fear of it being lost sight of, other possible explanations are sought for the symptoms and then either eliminated through testing or (and this is the BIG "or") if they cannot be eliminated considering whether the original diagnosis and/or prognosis can still be sustained in the light of new evidence and/or assessment.
Meanwhile I am of course making inquiries about doctors elsewhere in Australia who might be able and willing to consider the evidence (such as it is) and consider the situation from a perspective that is not coloured by previous knowledge of the 'case' and so perhaps offer a different view about what is in the pictures to date, the blood tests etc and/or may be willing to suggest other tests etc that could be done to definitely specify what else can and/or should be done.
Given the busy lives of doctors these days and extraordinary pressure under which they appear to operate this may be a 'big ask', however we will see what is possible.
For those former work colleagues who have already rung me or met with me in passing at the local shopping mall and/or who want to get together for a meal - thank you!
If you hear me being hesitant in accepting your kind invitations to get together and firm up a date - PLEASE do not take this the wrong way.
I will do my best to be available, however if someone offers me a choice between having a meal or having a test that may shed light on what is going on . . .
Wednesday, May 16, 2007
The bad news continues and gets worse
For those of my readers who have had the opportunity to read these messages and to have been with me on the journey through the nightmare of oesophageal cancer I am afraid I have some more bad news about me to report.
The visit to the oncologist has produced what I would certainly call the worst possible news - he has taken a look at the CT scan, the whole body bone scan and the blood reports and has come in with a verdict.
He has indicated that I have not one but two areas of problem one at the top of my lungs - the apex where the mass (which I thought had been removed both surgically and also with the use of chemo and radio therapy) is back. On top of this there appears to be some additional tumour in the right lung which is already 22 mm in size and no doubt growing as we speak.
While my oncologist is consulting with colleagues about the scans and what if anything can be done he is of the view that this is really the end of the line and that even with treatment the likelihood of anything other than palliative treatment is remote and when really pushed he eventually came out and said that the average life span for people in my situation is less than a year. So since I have already managed to convince the powers that be that I am at the wrong end of ONE bell curve I suspect that this could mean anything from days to weeks to a few months and only with exceptional good luck and good management close to the 'less than a year' he is envisaging.
I am not sure how anyone else is likely to react to this news - I for one am staggered!
I am staggered that the growth in the mass which is undocumented in the place where I had an operation not all that long ago and where I had treatment to remove residual cells has not worked - apparently. I am even more staggered that there is a new mass in the middle of my right lung.
What amazes me I guess is how it is possible to determine so precisely that what I have are related to me pre-existing condition when for example the blood tests which were taken AFTER the CT and the Bone scan do not show the usual markers for cancer.
Being told that biopsies are really not needed and/or very risky is also somewhat unsettling and I must confess to finding myself in the stages of bereavement that Kubler Ross talks about - I am in both the denial and the anger stage at present. I am angry that I do not seem to be able to get access to advice about all of the options that are possibly available to me together of course with an outline of the potential risks and benefits and costs and angry that I have not had an explanation of what is possible - apart from the bleeding obvious which is of course to have chemo therapy and hope that there is a another period of remission or possibly treating one or the other or both of the sites with radio and chemotherapy or simply heading off to oblivion!
I guess from the doctors' points of view it is early days yet and no doubt they have to collect their collective wisdom and see what if anything they can do. In the interim I guess all that is left for me to do is to start with serious bending exercises so that I at least try to get supple enough to kiss my own backside goodbye.
Meanwhile - so as not to get too maudlin about the news to date I am of course still going for walks around the lake where I got some piece of mind on the last few occasions when I received bad news. This has a multipurpose basis - I get exercise to build up the body as far as possible and I get to contemplate nature I also get to see the seasons change and so get my mind off my own troubles and just marvel at what is around me. I also have time to think and to reason and hopefully to come up with some ideas on how I would like to spend what time I have left - at present with what feels like good health even though it is apparently only good on the surface.
Anyway, as the days pass I suspect that more "stuff" will be revealed and as a faithful recorder of events I will bring you the good bad and unvarnished news.
The visit to the oncologist has produced what I would certainly call the worst possible news - he has taken a look at the CT scan, the whole body bone scan and the blood reports and has come in with a verdict.
He has indicated that I have not one but two areas of problem one at the top of my lungs - the apex where the mass (which I thought had been removed both surgically and also with the use of chemo and radio therapy) is back. On top of this there appears to be some additional tumour in the right lung which is already 22 mm in size and no doubt growing as we speak.
While my oncologist is consulting with colleagues about the scans and what if anything can be done he is of the view that this is really the end of the line and that even with treatment the likelihood of anything other than palliative treatment is remote and when really pushed he eventually came out and said that the average life span for people in my situation is less than a year. So since I have already managed to convince the powers that be that I am at the wrong end of ONE bell curve I suspect that this could mean anything from days to weeks to a few months and only with exceptional good luck and good management close to the 'less than a year' he is envisaging.
I am not sure how anyone else is likely to react to this news - I for one am staggered!
I am staggered that the growth in the mass which is undocumented in the place where I had an operation not all that long ago and where I had treatment to remove residual cells has not worked - apparently. I am even more staggered that there is a new mass in the middle of my right lung.
What amazes me I guess is how it is possible to determine so precisely that what I have are related to me pre-existing condition when for example the blood tests which were taken AFTER the CT and the Bone scan do not show the usual markers for cancer.
Being told that biopsies are really not needed and/or very risky is also somewhat unsettling and I must confess to finding myself in the stages of bereavement that Kubler Ross talks about - I am in both the denial and the anger stage at present. I am angry that I do not seem to be able to get access to advice about all of the options that are possibly available to me together of course with an outline of the potential risks and benefits and costs and angry that I have not had an explanation of what is possible - apart from the bleeding obvious which is of course to have chemo therapy and hope that there is a another period of remission or possibly treating one or the other or both of the sites with radio and chemotherapy or simply heading off to oblivion!
I guess from the doctors' points of view it is early days yet and no doubt they have to collect their collective wisdom and see what if anything they can do. In the interim I guess all that is left for me to do is to start with serious bending exercises so that I at least try to get supple enough to kiss my own backside goodbye.
Meanwhile - so as not to get too maudlin about the news to date I am of course still going for walks around the lake where I got some piece of mind on the last few occasions when I received bad news. This has a multipurpose basis - I get exercise to build up the body as far as possible and I get to contemplate nature I also get to see the seasons change and so get my mind off my own troubles and just marvel at what is around me. I also have time to think and to reason and hopefully to come up with some ideas on how I would like to spend what time I have left - at present with what feels like good health even though it is apparently only good on the surface.
Anyway, as the days pass I suspect that more "stuff" will be revealed and as a faithful recorder of events I will bring you the good bad and unvarnished news.
Friday, May 11, 2007
Some BAD news for a change
I am afraid that I have some sad news for those of my readers who are still interested in what is happening with my cancer situation.
A recent CT scan has revealed a new area of problem in the right lung. With some bone scans and some blood tests I will soon have the news about whether it has spread or not and then next week I will be finding out what if anything the doctors can DO about it this time.
Stay tuned - I suspect we will be in a for a bumpy ride!
A recent CT scan has revealed a new area of problem in the right lung. With some bone scans and some blood tests I will soon have the news about whether it has spread or not and then next week I will be finding out what if anything the doctors can DO about it this time.
Stay tuned - I suspect we will be in a for a bumpy ride!
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