I would like to take this opportunity to thank all those of you who have wished me well and who have managed to sustain an on going interest in my well being.
Thank you!
I would also like to wish all of those of my readers who have faithfully followed my travails through this illness a very healthy new year!
I am NOT going to wish any of you a prosperous and happy new year simply because I am convinced that these matters take care of themselves, as long as you remain healthy.
The savings on health care costs alone, should bring a smile to your lips and feelings of prosperity.
The fact that you do not have any aches and pains can only enhance the feeling of happiness.
Of course if you remain healthy you may only experience prosperity briefly, for example if you have already contracted the buying bug and indulged in a buying frenzy prior to Christmas and now have to face paying off the massive credit card bills you have incurred.
Of course you may be able to defer unhappiness and enjoy prosperity by being able to indulge in a massive shopping spree you have either already started or are about to engage in through the post Christmas sales.
On thing is certain, if you have managed NOT to catch this consumer related illness then you will certainly be both happy and prosperous throughout the year to come.
Of course there is a flip side to this happiness and prosperity, you may have to suffer the indignity of comments from visitors as they remark on the fact that you have LAST year's entertainment centre, a previous generation of cell phone or, horror of horrors, a computer that is way past it's use by date!
I am of course being flippant.
I wish you all well and all that you wish for yourselves!
Once again - thank you for your interest in my welfare - whether you realise it or not - it is much appreciated.
Have a healthy, happy and prosperous New Year. I hope that 2008 will bring for you all everything that you wish for yourselves.
Friday, December 28, 2007
Monday, December 24, 2007
Merry Christmas and a Happy New Year
At least that is what I would like to wish for myself and all those who read this blog.
I was contacted by the ENT specialist relatively early this morning with the following news:
I for one am relieved to read the word "normal" so many times in the report.
It still does NOT explain the pains and why breathing was difficult and certainly does not even begin to explain some of the pain and stiffness of the joints in the shoulder and neck areas.
However what it DOES suggest is that we may have to look at things other than a cancer related recurrence to explain it all. Perhaps in the new year we may actually be able to do something useful to deal with the consequences of whatever is causing the issues.
Meanwhile I guess it's back to the "clear as mud, but it cover the ground."
As the new year inevitably rolls on I just hope that the small, but positive changes that appear to be taking place, will enable the voice to come back, however inadequately, and however partially so that I will once again be able to communicate with people using Skype instead of typing.
For those who have not yet experienced overuse syndrome - my only advice is - avoid it if you can - unless you are a masochist continuing pain is grossly over rated.
I was contacted by the ENT specialist relatively early this morning with the following news:
"The vocal cords have a normal appearance. The epiglottis has a normal appearance. The surrounding soft tissues are normal. The anterior and posterior triangles and submental region are normal. The salivary glands appear to have a normal appearance. What is seen of the superior mediastinum appears normal with no identifiable lymphadenopathy. What is seen of the lungs and pleura is normal. The skeleton has a normal appearance.I don't know about anyone else but for me this is the best news I could have at this time of the year.
Status post surgery but no adverse lesion identified."
I for one am relieved to read the word "normal" so many times in the report.
It still does NOT explain the pains and why breathing was difficult and certainly does not even begin to explain some of the pain and stiffness of the joints in the shoulder and neck areas.
However what it DOES suggest is that we may have to look at things other than a cancer related recurrence to explain it all. Perhaps in the new year we may actually be able to do something useful to deal with the consequences of whatever is causing the issues.
Meanwhile I guess it's back to the "clear as mud, but it cover the ground."
As the new year inevitably rolls on I just hope that the small, but positive changes that appear to be taking place, will enable the voice to come back, however inadequately, and however partially so that I will once again be able to communicate with people using Skype instead of typing.
For those who have not yet experienced overuse syndrome - my only advice is - avoid it if you can - unless you are a masochist continuing pain is grossly over rated.
Tuesday, December 18, 2007
An Interesting Night and Day
Woke this morning around 3:00 am and found that if I tried to turn my head to the left I simply was unable to either take in or expel any air. Wonderful - breathing being something that appears to be a precondition to being able to stay alive I was somewhat panicked and of course woke up and turned to the right and started to be able to breathe again. It was with some trepidation that I then adjusted myself and went back to sleep again after some panicked moments and woke later this morning with the determination to have this looked at.
I suspect this will be a BIG ask at this time of the year when most Doctors also have their fancy turn to Christmas cheer that does NOT involve their patients. So an appointment with the local GP was arranged and since he was unavailable what I presume was a locum was seen. As she has no real familiarity with my case there were a considerable number of issues to go through and eventually I learned that the ENT that I had seen before had closed his offices for the holidays, that another ENT was busy with patients and so left the surgery with the assurance that some form of emergency appointment would be arranged for me - whether with an ENT specialist or a registrar that the local hospital so that they could put the scope down the throat and actually see what they could see. At this point of course I went home to await the phone call that would no doubt be an appointment to see someone about what was happening and what if anything needed to be done.
Finally the phone call came and I was able to learn that I would be able to have an appointment with a specialist at 2:20 I agreed and that was fine. Then a little later I was contacted again and told that there had been a cancellation and I could now have an appointment at 12:20 - I grabbed it!
By the time I actually managed to get to my car to start out for the appointment I did something that felt right at the time which was to stretch my neck up and backward and noticed that there was almost a snapping of tendons in the neck which was both audible and painful and then lo and behold I was able to turn my neck to the left and breathe again - all just in front of the appointment of course.
Wonderful - picked up my partner from work and we both attended the appointment where I explained the miraculous snapping tendon and the consequences and then the doctor (someone who works with a chap that I had seen before by coincidence) took notes and finally extracted what I laughingly call "the Snake" and went in through the nose and looked into my throat and airway. What he found was interesting.
There did not appear to be a tumour but the airway had narrowed to a gap of only 2mm so there was always going to be a risk of problems. He did not know why. He explained that in the worst case I could have a tracheostomy which would enable me to breathe at least - but he did indicate that this was NOT a great form of treatment unless things got really bad.
So some hundreds of dollars later I left his surgery and will today take in my scan etc so the doctors can have a chin wag and see what they can all discover from the documentation and the look down the throat.
Ain't Christmas wonderful!
I suspect this will be a BIG ask at this time of the year when most Doctors also have their fancy turn to Christmas cheer that does NOT involve their patients. So an appointment with the local GP was arranged and since he was unavailable what I presume was a locum was seen. As she has no real familiarity with my case there were a considerable number of issues to go through and eventually I learned that the ENT that I had seen before had closed his offices for the holidays, that another ENT was busy with patients and so left the surgery with the assurance that some form of emergency appointment would be arranged for me - whether with an ENT specialist or a registrar that the local hospital so that they could put the scope down the throat and actually see what they could see. At this point of course I went home to await the phone call that would no doubt be an appointment to see someone about what was happening and what if anything needed to be done.
Finally the phone call came and I was able to learn that I would be able to have an appointment with a specialist at 2:20 I agreed and that was fine. Then a little later I was contacted again and told that there had been a cancellation and I could now have an appointment at 12:20 - I grabbed it!
By the time I actually managed to get to my car to start out for the appointment I did something that felt right at the time which was to stretch my neck up and backward and noticed that there was almost a snapping of tendons in the neck which was both audible and painful and then lo and behold I was able to turn my neck to the left and breathe again - all just in front of the appointment of course.
Wonderful - picked up my partner from work and we both attended the appointment where I explained the miraculous snapping tendon and the consequences and then the doctor (someone who works with a chap that I had seen before by coincidence) took notes and finally extracted what I laughingly call "the Snake" and went in through the nose and looked into my throat and airway. What he found was interesting.
There did not appear to be a tumour but the airway had narrowed to a gap of only 2mm so there was always going to be a risk of problems. He did not know why. He explained that in the worst case I could have a tracheostomy which would enable me to breathe at least - but he did indicate that this was NOT a great form of treatment unless things got really bad.
So some hundreds of dollars later I left his surgery and will today take in my scan etc so the doctors can have a chin wag and see what they can all discover from the documentation and the look down the throat.
Ain't Christmas wonderful!
Tuesday, December 11, 2007
"Feed the Man Meat" - perhaps not!
I wonder if there is now a possibility of suing the organisations that started off the campaign in Australia about the need to 'feed the man meat'
The latest information from the ABC is that there is now research which seems to link the consumption of red and processed meat with lung and colorectal cancers and this of course includes oesophageal cancer.
It's at this point that you can probably get me started on GM crops and what sort of a mess THAT is likely to produce in the next few years.
There goes my last argument against being a vegetarian!
The latest information from the ABC is that there is now research which seems to link the consumption of red and processed meat with lung and colorectal cancers and this of course includes oesophageal cancer.
Very soon if this research continues we are likely to find that it is better to eat the occasional bit of unprocessed grain and fruit and perhaps if you happen to be of 'middle eastern appearance' the occasional date! everything else is simply unhealthy."People who eat a lot of red meat and processed meats have a higher risk of several types of cancer, including lung cancer and colorectal cancer, US researchers have reported.
The work is the first big study to show a link between meat consumption and lung cancer. It also shows that people who eat a lot of meat have a higher risk of liver and esophageal cancer and that men raise their risk of pancreatic cancer by eating red meat.
"A decrease in the consumption of red and processed meat could reduce the incidence of cancer at multiple sites," Dr Amanda Cross and colleagues at the US National Cancer Institute wrote in their report, published in the Public Library of Science journal PLoS Medicine."
It's at this point that you can probably get me started on GM crops and what sort of a mess THAT is likely to produce in the next few years.
There goes my last argument against being a vegetarian!
Merry Christmas, Happy Chanukah, Happy New Year
I just wanted to wish all my readers the compliments of the season and let you all know that I still have no further news that what I offered back in November.
One ray of possible sunshine is that my scans were apparently taken to a case conference or some other form of presentation and the verbal advice I have had back from the Doctor's receptionist is that the conclusion from that meeting was that my aches and pains may be from just the effects of the radiation scarring and that I would get a letter in due course from the Doctor.
This would indeed be welcome news and news which has not as yet arrived in any form other than the comments of the doctor's receptionist.
So this will be the week I ask again for some verification - otherwise it's just waiting around until the next scan to see what if anything is happening.
Sorry I have no better news than that.
One ray of possible sunshine is that my scans were apparently taken to a case conference or some other form of presentation and the verbal advice I have had back from the Doctor's receptionist is that the conclusion from that meeting was that my aches and pains may be from just the effects of the radiation scarring and that I would get a letter in due course from the Doctor.
This would indeed be welcome news and news which has not as yet arrived in any form other than the comments of the doctor's receptionist.
So this will be the week I ask again for some verification - otherwise it's just waiting around until the next scan to see what if anything is happening.
Sorry I have no better news than that.
Wednesday, November 14, 2007
Update 13th November 2007
Well the visit to the Chemo Therapy oncologist went well!
The blood tests once again show no cancer markers (not that this is a definitive sign).
To cut a long story short - we are no further advanced than the last time. He indicated that if this was a recurrence it was most unusual in that in his experience most people with oesophageal cancer who have a recurrence then head downhill fast and so a six month period with little change is "unusual".
We have another appointment in six months time.
Meanwhile I guess it's life as usual! SIGH!
The blood tests once again show no cancer markers (not that this is a definitive sign).
To cut a long story short - we are no further advanced than the last time. He indicated that if this was a recurrence it was most unusual in that in his experience most people with oesophageal cancer who have a recurrence then head downhill fast and so a six month period with little change is "unusual".
We have another appointment in six months time.
Meanwhile I guess it's life as usual! SIGH!
Thursday, November 01, 2007
Cancer Study in the news
News Item on the BBC for those who still have NOT managed to get cancer:
Be thin to cut cancer, study says
I guess for those of us who already have a cancer the advice comes too late.
Nevertheless the site also has a large (11.9 Mb) sized file that can be downloaded by readers who want to see the "Food, activity and prevention of cancer report"
Worth a read if you are interested in trying to ensure that you do NOT end up with this dreaded illness.
Be thin to cut cancer, study says
I guess for those of us who already have a cancer the advice comes too late.
Nevertheless the site also has a large (11.9 Mb) sized file that can be downloaded by readers who want to see the "Food, activity and prevention of cancer report"
Worth a read if you are interested in trying to ensure that you do NOT end up with this dreaded illness.
Thursday, October 25, 2007
The results of the PET scan are back!
Here is the short version:
The current size of the soft tissue mass appears not to have grown significantly since the last picture and yet there is something there that should not be there. Apparently taking a biopsy given the location is a risk and a really hit and miss option. So we are back where we were in May really - we don't know for sure WHAT it is but we do suspect that it is indeed a recurrence and as such the question is what to DO about it?
It is a fact of life that chemo therapy would actually reduce the size of the mass if it is a tumour, but of course this would use up another 'life-line' as the number of times that chemo therapy can be used effectively is finite and not open to discussion.
After a while the stuff is so toxic that using it actually makes things worse!
Apparently the location makes it unsuitable for further surgical intervention and radiation therapy is out of the question.
So the question still is WHAT to do?
If you let the thing go without intervention then at present it's very slow and appears not to be impacting on anything else so - do you wait for it to grow bigger and risk cells breaking off and starting new spots elsewhere making the problem worse?
Do you hit it and hit it hard once again?
Or ?????
Wait for the next exciting episode in this saga I guess!
"There has been mild progression in terms of the extent of the FDG uptake in the right base of the neck, right supraclavicular fossa and in the proximal part of the gastric pull through as described. The uptake in the left upper retrotracheal region also appeared more evident on today's study. In view of the uptake at these sites at this time interval following radiotherapy, recurrent malignancy at these sites cannot be definitely excluded. However since the progression is mild when compared to the previous PET in May 2007, if no further treatment or intervention is considered at this point in time, a further progress study in 3 months to assess any interval change may be of benefit.I have no idea about anyone else's feelings about this result, but it my initial impression is that it is a continuation of the words of the Harry Belafonte song:
Otherwise there is no evidence of metabolically active malignancy demonstrated elsewhere."
"it's as clear as mud, but it cover de ground andThe view of the oncologist is that it is more likely than not to be either a recurrence or some continuation of the cancer that was not able to be totally removed with the last set of operations in 2006.
the confusion she goes round and round."
The current size of the soft tissue mass appears not to have grown significantly since the last picture and yet there is something there that should not be there. Apparently taking a biopsy given the location is a risk and a really hit and miss option. So we are back where we were in May really - we don't know for sure WHAT it is but we do suspect that it is indeed a recurrence and as such the question is what to DO about it?
It is a fact of life that chemo therapy would actually reduce the size of the mass if it is a tumour, but of course this would use up another 'life-line' as the number of times that chemo therapy can be used effectively is finite and not open to discussion.
After a while the stuff is so toxic that using it actually makes things worse!
Apparently the location makes it unsuitable for further surgical intervention and radiation therapy is out of the question.
So the question still is WHAT to do?
If you let the thing go without intervention then at present it's very slow and appears not to be impacting on anything else so - do you wait for it to grow bigger and risk cells breaking off and starting new spots elsewhere making the problem worse?
Do you hit it and hit it hard once again?
Or ?????
Wait for the next exciting episode in this saga I guess!
Saturday, October 20, 2007
Damn!
Saw this on the news today and thought that if ONLY I can hang on for a few more years I might be able to get back both my voice and some of the nerves that have been cut or damaged through the surgery that has taken place.
Check it out for yourselves: at http://news.bbc.co.uk/1/hi/health/7049601.stm
New nerves grown from stem cells taken from a patient's fat could be available by 2011, researchers have said.
Check it out for yourselves: at http://news.bbc.co.uk/1/hi/health/7049601.stm
New nerves grown from fat cells
 The technique could potentially repair severed nerves |
They could potentially be used to repair peripheral nerves left severed by surgery or accidents.
Manchester University scientists plan to place the new nerve tissue inside a biodegradable plastic tube, which can be used to rejoin the two broken ends.
The findings of their study on rats, in Experimental Neurology, could help hundreds of people a year, they say.
The patients will not be able to tell that they had ever 'lost' [the feeling to] their limb 
Professor Giorgio Terenghi
UK Centre for Tissue Regeneration
At the moment, only limited techniques are available to help repair nerves outside the spinal cord, even though they have a limited capacity to regrow.
Other nerves from elsewhere in the patient are often used, which does not restore perfect function and can cause further damage.
The Manchester technique uses stem cells - immature cells which the body naturally uses to create different tissue types.
So far, the team has extracted stem cells from fat tissue taken from rats, and managed to coax the cells into becoming neurons - nerve cells - in the laboratory.
Their next step is to repeat this in stem cells from human fat, and then create a full replacement nerve, using a biodegradable "sheath" to surround it.
This nerve-filled tube could then be implanted to re-join the ends of a severed nerve virtually anywhere in the body, they claim.
Large tumour
Dr Paul Kingham, who led the research, said: "The differentiated stem cells have great potential for future clinical use, initially for treatment of patients with traumatic injuries of nerves in the arms and legs."
He said that the treatment might be available in four or five years, as a study to test the biodegradable tube is already under way.
Dr Kingham said it could also work in cases where surgeons have had to remove a large tumour close by a nerve, damaging or cutting the nerve in the process.
Professor Giorgio Terenghi, the director of the university's Centre for Tissue Regeneration, said: "This new research is a very exciting development that will improve the lives of many different types of patients - and therefore many, many people.
"The frequency of nerve injury is one in every 1,000 of the population - or 50,000 cases in the UK every year.
"The patients will not be able to tell that they had ever 'lost' [the feeling to] their limb, and will be able to carry on exactly as they did before."Monday, October 15, 2007
Still waiting!
For those who have rung or written to ask what's happening - my answer I am afraid continues to be the same - nothing!
There has been no change in the situation - I have had the PET scan and returned home - there has been no contact from any of the doctors involved about the results. I suppose I could always to the "no news is good news" routine but I am afraid that I suspect that more forces are at play. With Liverpool hospital having lost one of its machines and having a back log of scan that they are doing and analysing I suspect that what's really going on is that the results are caught up in a back log and it may be some time before they are analysed and reports etc sent to my doctors.
So it's a continuation of drugs to try and maintain the barriers to pain - it's a continuation of day after day of trying to put out of one's mind possibilities and it's a continuation of trying to find the best possible times to eat and to sleep without it having a major impact on those around you.
As for the inability to speak with any volume - the check out lady at the local supermarket asked the other day if I had laryngitis.
What a wonderful question!
It meant that she could hear me - albeit with an effort - but at least she could hear me. I told her what the problem was and she was shocked - I don't think she has ever met anyone before who cannot make their vocal cords work!
There are signs that I am starting to cope a little better with my current situation. I have figured out some ways of eating and drinking that cause as little problem as possible and as a result I suspect that I may be able to recover some of the weight I seem to have lost over the last few weeks.
More as it happens.
There has been no change in the situation - I have had the PET scan and returned home - there has been no contact from any of the doctors involved about the results. I suppose I could always to the "no news is good news" routine but I am afraid that I suspect that more forces are at play. With Liverpool hospital having lost one of its machines and having a back log of scan that they are doing and analysing I suspect that what's really going on is that the results are caught up in a back log and it may be some time before they are analysed and reports etc sent to my doctors.
So it's a continuation of drugs to try and maintain the barriers to pain - it's a continuation of day after day of trying to put out of one's mind possibilities and it's a continuation of trying to find the best possible times to eat and to sleep without it having a major impact on those around you.
As for the inability to speak with any volume - the check out lady at the local supermarket asked the other day if I had laryngitis.
What a wonderful question!
It meant that she could hear me - albeit with an effort - but at least she could hear me. I told her what the problem was and she was shocked - I don't think she has ever met anyone before who cannot make their vocal cords work!
There are signs that I am starting to cope a little better with my current situation. I have figured out some ways of eating and drinking that cause as little problem as possible and as a result I suspect that I may be able to recover some of the weight I seem to have lost over the last few weeks.
More as it happens.
Thursday, September 20, 2007
The latest update
I have been on a non steroidal anti inflammatory to reduce the pain that is most apparent in my right hand side. It's where I have been cut open a number of times and they have severed the nerves, taken out half a thyroid and managed damage in other places to add to the damage that I did as a young man when I was playing Judo and the martial arts.
So my theory has been that there is something going wrong there and hence the stridor and difficulties with breathing etc. It did NOT explain the loss of voice.
However it did explain why I have not been posting. As the right hand is one I need to use when typing I have simply been resting it.
There must be SOMETHING in the "contract" I have in respect of this blog, that stipulates that I do not have to self inflict damage just to keep you the readers, happy.)
Meanwhile went to see the radiation oncologist yesterday at the hospital. She brought out the anatomy text books to try and show me why she has some concerns that the last CT scan while not varying from the one three months earlier COULD perhaps have a tiny area in the neck which COULD maybe show some slight grey matter that COULD perhaps be a tumour that COULD perhaps be pressing on the nerve that controls the vocal cord that wraps around the aorta etc etc. All this of course is on the LEFT hand side where I have not been having any pain at all!
However since it is not clear they are really uncertain about it and she suggests that while chemo therapy COULD eliminate the problem early - if there is one - it would of course also reduce the number of times that I could once again go back to Chemo therapy as a form of treatment - the toxic stuff seems to have only so many times it can be used before the bone marrow simply can't cope with it and then you have no defences at all!
I advised her that I was NOT going to try this approach "on their speculation" if it reduced my chances for further treatment should it become necessary in the future.
So she suggested that we try another PET scan and then in October another CT scan to see what if anything has developed and changed. She did advise that if I was right and the vocal cord thinggy was due to a virus infection then it would take MONTHS for the voice to come back (this is something I already knew) however if it was a tumour then there was NO hope that it could come back unless it was treated early!
So whichever way you play it - it's a crap shoot! Frankly I would rather lose my voice than further poison my body with more chemo therapy at least at this point needlessly.
What's worse if my voice came back on its own AND I had had the chemo therapy - then you can bet your bottom dollar they would claim a success for their treatment and not for my own body's remarkable recuperative powers.
So I came home - tossed and turned all night and by this morning I actually had a slight voice again - probably scared myself into talking!
Meanwhile the speech therapist has said to rest it for a while to see if it WOULD come back so after speaking a few words this morning and of course thanking God that I could I have gone back into whisper mode.
Let's hope that I am right and the voice will come back - in which case I will simply take the next 3/12 CT scan as normal and perhaps JUST to see what if anything has changed get a new PET scan (even though they cost an arm and a leg over here) but I will NOT consent to treatment until they can SHOW me some tumour and in the interim I have suggested to them in the strongest non voice I could muster - that while I was OK with the possibility of it being a new tumour and accepted that
possibility - I would prefer it if they could get their collective thinking caps together and dream up what ELSE it could be so that we would be able to use what I laughingly remember was called the scientific method (as distinct from guesswork) and actually test each of the possibilities and eliminate them one by one (if they can) so that the ONLY possibility left is the tumour - THEN I will have treatment
immediately.
But if they choose to stay in group think and not explore other possibilities then frankly I will probably want to see a whole new bunch of doctors who may listen to the patient's reasoning instead of their own (dare I say emotional?) responses!
Wednesday, September 05, 2007
More News
I am sorry that I have not been on line for a while.
I now seem to have a few medical issues under investigation that do not make sense.
I lost my voice completely as the second vocal cord froze and then also found it hard to breathe and swallow thanks to a condition called Stridor. One doctor immediately put this down to a new tumour, about which there has been no evidence, another simply did not know and a third suggested it could be due to the radiation scarring while a fourth suggested that it could, maybe have been due to an infection. Meanwhile none of them have any ideas on what to do except wait.
In the interim of course the patient (me) can't breathe, has difficulty swallowing, panics every time that he has a coughing fit where because the vocal cords can't close there is not enough pressure to be able to effectively sneeze or cough and so clear mucus and of course there is no way to call for help because you have to have a voice to be able to call the emergency number and explain you need an ambulance and for what and where to send it.
To add to my misery, I also seem to have a case of carpal tunnel syndrome or overuse syndrome which means that I am typing with only one hand - so even a voice synthesis is difficult.
Given the myths about the Hippocratic oath it is moot whether the phrase "At least do no harm" originated there or with Galen the Roman physician.
However it seems to me that whoever had this point in mind could well have been thinking that it is less than useful to make your patient sick with worry by entering into a group think process where based on past history there is immediate thought being given to new tumour let's all start from this premise and base our advice on this, never mind the fact that the tests are not clear and never mind the facts that the sorts of treatment we are talking about are not all that capable of being used over and over again and never mind what psychological issues it raises for the patient!
At present, as you may be able to tell I am not all that pleased with the medical and allied professions however I have to say that they are doing their best, but could perhaps do lot better by LISTENING to their patient and his description of the symptoms and the experiences of those symptoms over time as the history of what is being experienced is as relevant as what they have learned from their books and experience.
High praise to the speech therapist though who did teach me some tricks to use to swallow and who even gave me some thickening stuff that allows even water to be be turned to slime that can be swallowed, but is so disgusting that it's mere presence is enough to train the body to learn how to swallow, if for no other reason than fear and revulsion!
By taking some drugs that are non steroidal anti inflammatory medication, the pain from the overuse syndrome and arthritis is manageable. The new anti reflux medication keeps the resulting juices as acid neutral as possible and of course the medication to try and deal with my breathing difficulties actually works on some days, if not on others.
I am learning, with bad grace, to cope, I guess. Of course it is now Spring over here so that will no doubt mean more trials as pollens etc add to the mix of issues.
The good news is that I am still alive and able to have the occasional flash of humour about all this. I am beginning to see though why most comedians had a hard life. To survive you either have to find SOMETHING FUNNY or simply submit to the pain and misery of it all.
So thanks to all the comedians your experiences are all very helpful right now!
I now seem to have a few medical issues under investigation that do not make sense.
I lost my voice completely as the second vocal cord froze and then also found it hard to breathe and swallow thanks to a condition called Stridor. One doctor immediately put this down to a new tumour, about which there has been no evidence, another simply did not know and a third suggested it could be due to the radiation scarring while a fourth suggested that it could, maybe have been due to an infection. Meanwhile none of them have any ideas on what to do except wait.
In the interim of course the patient (me) can't breathe, has difficulty swallowing, panics every time that he has a coughing fit where because the vocal cords can't close there is not enough pressure to be able to effectively sneeze or cough and so clear mucus and of course there is no way to call for help because you have to have a voice to be able to call the emergency number and explain you need an ambulance and for what and where to send it.
To add to my misery, I also seem to have a case of carpal tunnel syndrome or overuse syndrome which means that I am typing with only one hand - so even a voice synthesis is difficult.
Given the myths about the Hippocratic oath it is moot whether the phrase "At least do no harm" originated there or with Galen the Roman physician.
However it seems to me that whoever had this point in mind could well have been thinking that it is less than useful to make your patient sick with worry by entering into a group think process where based on past history there is immediate thought being given to new tumour let's all start from this premise and base our advice on this, never mind the fact that the tests are not clear and never mind the facts that the sorts of treatment we are talking about are not all that capable of being used over and over again and never mind what psychological issues it raises for the patient!
At present, as you may be able to tell I am not all that pleased with the medical and allied professions however I have to say that they are doing their best, but could perhaps do lot better by LISTENING to their patient and his description of the symptoms and the experiences of those symptoms over time as the history of what is being experienced is as relevant as what they have learned from their books and experience.
High praise to the speech therapist though who did teach me some tricks to use to swallow and who even gave me some thickening stuff that allows even water to be be turned to slime that can be swallowed, but is so disgusting that it's mere presence is enough to train the body to learn how to swallow, if for no other reason than fear and revulsion!
By taking some drugs that are non steroidal anti inflammatory medication, the pain from the overuse syndrome and arthritis is manageable. The new anti reflux medication keeps the resulting juices as acid neutral as possible and of course the medication to try and deal with my breathing difficulties actually works on some days, if not on others.
I am learning, with bad grace, to cope, I guess. Of course it is now Spring over here so that will no doubt mean more trials as pollens etc add to the mix of issues.
The good news is that I am still alive and able to have the occasional flash of humour about all this. I am beginning to see though why most comedians had a hard life. To survive you either have to find SOMETHING FUNNY or simply submit to the pain and misery of it all.
So thanks to all the comedians your experiences are all very helpful right now!
Friday, August 31, 2007
Latest Developments
I am afraid that there have been some recent developments that are NOT good news.
For those of you who have been celebrating (along with me) my news of recent times that the CT scan was not changed from the one three months ago and the oncologist giving me the message to have fun and enjoy life, I suspect that this will come as a considerable disappointment. For me I have to admit it is more than disappointing, it is currently devastating!
All of a sudden last a week ago I just lost my voice completely. It was as if a switch had been turned off. I found that I could breathe or should I say gasp air at some points and I found it difficult to sleep at night without being woken by either reflux that I was unable to quickly clear and so with the terror of actually aspirating whatever was happening instead of being able to breathe.
It seems that we all take breathing for granted during our lives and we also seem to take for granted that when you swallow liquids and accidentally some of it 'goes down the wrong way' i.e. when you aspirate - you just close your vocal cords and build up some pressure in the air way and then forcibly expel whatever has inadvertently found its way into the airway.
Note the cautionary tale here. You have to be able to close both vocal cords to achieve this.
I have advised in the past that I have had one vocal cord frozen as a result of the surgery to take out the tumour under my collar bone last year. It will not and cannot recover as the nerves that enable this function to happen were also cut during the operation. What was done about this was to place some GoreTex material into the right vocal fold so as to plump it up and in that fashion bring the right vocal cord closer to the closed position with the aim of enabling the left vocal cord to do its work and close with the right one whenever I needed to speak.
Let's just say that the operation was not as successful as hoped and while I managed to get the cords to close sufficiently to be able to make sounds - they were weak and lacked any power at all.
The net result was acceptable and at least enabled me to joke about the fact that people would actually have to listen to what I was saying because without listening they could hear nothing!
Well it was no joke to find that the other vocal cord has stopped functioning!
This means that I now find it difficult to drink clear liquids without aspirating them, I cannot talk at all (a blessing some might say), but really frightening for me in that if I need help I cannot call out, I cannot call anyone on the phone and I am finding it difficult to even get sufficient fluids to ensure that my body is completely hydrated.
Anyway, to cut a long story short - we saw the ENT specialist yesterday and he did his marvellous work of spraying some stuff up the left nostril and then inserting that lovely little rubber tube with a light and a camera all the way through the nasal cavity and down into the throat to have a look at what was happening.
He, along with Leanne saw that the left vocal cord is (at least at present) also non functional.
In discussing this of course everyone is convinced that there is another tumour growth somewhere that is responsible though there is a remote possibility (so it is thought) that it could be the result of some viral infection and that the cord will spontaneously return to some function. Meanwhile there is sufficient space between the cords to enable breathing - especially if the head is turned to the right.
So what will happen from here is anyone's guess but since some of you have asked I thought that while I could I would at least explain WHY you are not getting any phone calls from me or WHY I cannot talk to you on Skype or WHY I am not being more communicative.
I hope you will all understand that at present - and I do really hope that it is just "at present" I am physically not able to talk to anyone and so would like to ask for your understanding.
Meanwhile I am NOT on the computer much either these days as I another condition which is probably some arthritis combined with overuse syndrome is quite painful and the treatments for this condition while very effective are also treatments that create the reflux that is so NON conducive to being able to breathe easily.
It's not a great place to be at present, so bear with me please until we get some news from the doctors and other specialists who are currently turning their attention to what if anything can be done to teach me how to live with my current condition and/or to figure out what if anything more can be done to provide some other suggested remedies or alternatives.
Meanwhile I am trying simply to get from one day to the next in between bouts of frustration, anger and fear.
So if you call and the phone is picked up and what you hear are the "sounds of silence" (with apologies to Simon and Garfunkel - by all means talk to me and let me hear what you are saying just do NOT expect to be able to hear my body language trying to respond.
Sorry about that folks - at present it's the best I can do!
For those of you who have been celebrating (along with me) my news of recent times that the CT scan was not changed from the one three months ago and the oncologist giving me the message to have fun and enjoy life, I suspect that this will come as a considerable disappointment. For me I have to admit it is more than disappointing, it is currently devastating!
All of a sudden last a week ago I just lost my voice completely. It was as if a switch had been turned off. I found that I could breathe or should I say gasp air at some points and I found it difficult to sleep at night without being woken by either reflux that I was unable to quickly clear and so with the terror of actually aspirating whatever was happening instead of being able to breathe.
It seems that we all take breathing for granted during our lives and we also seem to take for granted that when you swallow liquids and accidentally some of it 'goes down the wrong way' i.e. when you aspirate - you just close your vocal cords and build up some pressure in the air way and then forcibly expel whatever has inadvertently found its way into the airway.
Note the cautionary tale here. You have to be able to close both vocal cords to achieve this.
I have advised in the past that I have had one vocal cord frozen as a result of the surgery to take out the tumour under my collar bone last year. It will not and cannot recover as the nerves that enable this function to happen were also cut during the operation. What was done about this was to place some GoreTex material into the right vocal fold so as to plump it up and in that fashion bring the right vocal cord closer to the closed position with the aim of enabling the left vocal cord to do its work and close with the right one whenever I needed to speak.
Let's just say that the operation was not as successful as hoped and while I managed to get the cords to close sufficiently to be able to make sounds - they were weak and lacked any power at all.
The net result was acceptable and at least enabled me to joke about the fact that people would actually have to listen to what I was saying because without listening they could hear nothing!
Well it was no joke to find that the other vocal cord has stopped functioning!
This means that I now find it difficult to drink clear liquids without aspirating them, I cannot talk at all (a blessing some might say), but really frightening for me in that if I need help I cannot call out, I cannot call anyone on the phone and I am finding it difficult to even get sufficient fluids to ensure that my body is completely hydrated.
Anyway, to cut a long story short - we saw the ENT specialist yesterday and he did his marvellous work of spraying some stuff up the left nostril and then inserting that lovely little rubber tube with a light and a camera all the way through the nasal cavity and down into the throat to have a look at what was happening.
He, along with Leanne saw that the left vocal cord is (at least at present) also non functional.
In discussing this of course everyone is convinced that there is another tumour growth somewhere that is responsible though there is a remote possibility (so it is thought) that it could be the result of some viral infection and that the cord will spontaneously return to some function. Meanwhile there is sufficient space between the cords to enable breathing - especially if the head is turned to the right.
So what will happen from here is anyone's guess but since some of you have asked I thought that while I could I would at least explain WHY you are not getting any phone calls from me or WHY I cannot talk to you on Skype or WHY I am not being more communicative.
I hope you will all understand that at present - and I do really hope that it is just "at present" I am physically not able to talk to anyone and so would like to ask for your understanding.
Meanwhile I am NOT on the computer much either these days as I another condition which is probably some arthritis combined with overuse syndrome is quite painful and the treatments for this condition while very effective are also treatments that create the reflux that is so NON conducive to being able to breathe easily.
It's not a great place to be at present, so bear with me please until we get some news from the doctors and other specialists who are currently turning their attention to what if anything can be done to teach me how to live with my current condition and/or to figure out what if anything more can be done to provide some other suggested remedies or alternatives.
Meanwhile I am trying simply to get from one day to the next in between bouts of frustration, anger and fear.
So if you call and the phone is picked up and what you hear are the "sounds of silence" (with apologies to Simon and Garfunkel - by all means talk to me and let me hear what you are saying just do NOT expect to be able to hear my body language trying to respond.
Sorry about that folks - at present it's the best I can do!
Wednesday, August 15, 2007
The news is IN and it's GOOD
Since my last blast about my situation I have managed to visit my Oncologist and also my GP.
There is now general agreement that since there have been no changes in the neck area - the chances of the abnormal thickening of the tissues there is more likely to be radiation scarring than a recurrence of the cancer. With an endoscopy showing no trace of a recurrence INSIDE the remnants of the oesophagus and the stomach and with all the other organs seemingly normal there is no evidence elsewhere of a recurrence either. The mass in the lung seems to have disappeared so there is some hope that it was an infection that showed up on the scans and blood tests have also shown no elevation of the cancer markers.
In other words at present and for the Lord only knows how long - I appear to be as 'normal' as I am likely to get.
Meanwhile of course there is some residual pain from arthritis etc which is being under some control with mild pain killers and an occasional burst of anti inflammatory medication. I will be changing some medication to reduce even further the acid in my system and this hopefully will also reduce the incidence of reflux and the swelling of the area in the throat where I have to swallow.
When I asked if I could travel or go to work or ?? I was advised to enjoy life to the max. (Hidden behind this of course is the non stated but additional (while you can - 'cause you are likely to be in for a very nasty ride!)
Still, I will take my good news where and when I can get it.
I hope this brings everyone up to date.
There is now general agreement that since there have been no changes in the neck area - the chances of the abnormal thickening of the tissues there is more likely to be radiation scarring than a recurrence of the cancer. With an endoscopy showing no trace of a recurrence INSIDE the remnants of the oesophagus and the stomach and with all the other organs seemingly normal there is no evidence elsewhere of a recurrence either. The mass in the lung seems to have disappeared so there is some hope that it was an infection that showed up on the scans and blood tests have also shown no elevation of the cancer markers.
In other words at present and for the Lord only knows how long - I appear to be as 'normal' as I am likely to get.
Meanwhile of course there is some residual pain from arthritis etc which is being under some control with mild pain killers and an occasional burst of anti inflammatory medication. I will be changing some medication to reduce even further the acid in my system and this hopefully will also reduce the incidence of reflux and the swelling of the area in the throat where I have to swallow.
When I asked if I could travel or go to work or ?? I was advised to enjoy life to the max. (Hidden behind this of course is the non stated but additional (while you can - 'cause you are likely to be in for a very nasty ride!)
Still, I will take my good news where and when I can get it.
I hope this brings everyone up to date.
Thursday, August 09, 2007
CT Scan Results
For those who have, like me been awaiting the CT scan results I have got them at last and to be honest I am not entirely sure what to make of them so I will be asking the doctors to interpret the wording of the results and to look at the nice pictures and tell me "now what?"
The report states that nothing much has changed for the worse since the last scan.
The mass in the right lung seems to have disappeared or to put it into the words of the result:
"The previously demonstrated irregular lesion within the right middle lobe is no longer apparent in today's examination. There is no focal pulmonary mass detected"
So I guess that's good news!
Meanwhile the neck area does not seem to have altered since the last scan and of course the endoscopy suggested that there was nothing inside the oesophagus and the stomach which was a sign of a recurrence.
So what does it all mean - no idea - but I hope it's good news - I will await the opinion of the doctors when they read the text and make sense of the wording.
Keep tuned I will let people know what's happening!
The report states that nothing much has changed for the worse since the last scan.
The mass in the right lung seems to have disappeared or to put it into the words of the result:
"The previously demonstrated irregular lesion within the right middle lobe is no longer apparent in today's examination. There is no focal pulmonary mass detected"
So I guess that's good news!
Meanwhile the neck area does not seem to have altered since the last scan and of course the endoscopy suggested that there was nothing inside the oesophagus and the stomach which was a sign of a recurrence.
So what does it all mean - no idea - but I hope it's good news - I will await the opinion of the doctors when they read the text and make sense of the wording.
Keep tuned I will let people know what's happening!
Onset of Pneumonia following Chemo Therapy
I have added this little note that I wrote up after the event for the benefit of anyone else who may be going through similar situations. Sorry that it is being posted some years after the event - I am embarrassed to say that it was misfiled!
The note describes what it is like to experience the end of chemo-therapy and beginning stages of a severe case of pneumonia that eventually hospitalised me for over two weeks during which I was told that I was close to death on several occasions.
I hope that anyone else who has had treatment and experiences the sort of temperature fluctuations that I experienced will seek medical attention immediately - I think that doing this actually may have saved my life - at least for another round!
"Coming off the two anti-nausea drugs following the end of the radio-therapy and the gap to the next round of chemo-therapy seemed to be required by the circumstances. I had been warned to come off the drug dexmethansone a steroid – in small increments over time. I was taking only half the normal adult dose of 4 tablets six hourly and I figured that reducing by half a tablet would be a reasonable way to reduce the intake. I checked this with the nursing staff to see if they would agree that this was OK and they all agreed that it was.
The note describes what it is like to experience the end of chemo-therapy and beginning stages of a severe case of pneumonia that eventually hospitalised me for over two weeks during which I was told that I was close to death on several occasions.
I hope that anyone else who has had treatment and experiences the sort of temperature fluctuations that I experienced will seek medical attention immediately - I think that doing this actually may have saved my life - at least for another round!
"Coming off the two anti-nausea drugs following the end of the radio-therapy and the gap to the next round of chemo-therapy seemed to be required by the circumstances. I had been warned to come off the drug dexmethansone a steroid – in small increments over time. I was taking only half the normal adult dose of 4 tablets six hourly and I figured that reducing by half a tablet would be a reasonable way to reduce the intake. I checked this with the nursing staff to see if they would agree that this was OK and they all agreed that it was.
The effects were devastating! From a situation in which L had described my behaviour as that of a “chipmunk on speed” I suddenly found myself weak as a kitten and totally listless and had some major problems with sleeping. I also realised that I was feeling very cold, even when the house was heated to 27° Celsius. I was puzzled by this and also by the collection of fluids in the lower extremities (i.e. an oedema). I rang the nursing staff and was told that it was a side effect from the withdrawal from the steroids. I accepted this information, but still sought to find ways to elevate my feet above my heart so that the oedema would be reduced and/or minimised.
I had been warned at the hospital that if I felt a rise in my temperature to go immediately to the hospital emergency room – however I was feeling cold not hot. At this point I did not associate the possibility that I could be having chills with having a fever.
Anyway this went on for a few days until 12 June 2004 when suddenly I felt a lot better, no longer cold and on 14/06/2004 I awoke after having slept some 7 hours. I seem to be re-adjusting my sleep patterns to a more normal cycle. I did however note that I was sweating, not profusely, but sweating. I checked with the old fashioned thermometer and found that my temperature was 38° Celsius. Not good! Woke L and told her that we had to go to the hospital immediately. She was still half asleep when I woke her and told her the news and of course, being L she wanted to know why. She then insisted that we measure my temperature again (why can’t people trust me to know what I am doing? I am an adult after all, damn it.) and then finally we could go to the hospital.
We arrived at around 9-9:30 am and spent some time in the waiting room before being seen by the triage nurse. By the time they took my temperature using their ear thermometer my temperature seemed to have fallen to 35.7° and I felt like a fool. However a doctor saw me and he took 3 lots of blood – the first from a cannula in my left hand that was most uncomfortable and painful and proved not to be to successful, then from a vein in the arm. The blood from the cannula was considered to be useless and thrown away and two samples were taken from my arm. In addition I provided some urine samples and they gave me a chest x-ray to boot.
Then there was nothing for it but to wait for the results. Hours later the results came back. Normal people have a white cell count of around 1 most people have neutrophil counts of 3-7 and mine was around 0.2. In short, I was advised that I needed hospitalisation for anything from 1-5 days and have two different lots of antibiotics administered to clean out whatever was causing the infection and the temperature fluctuations. There was only one problem – no beds in the ward. It was at this point that I suggested that since I was a private patient with insurance they could perhaps investigate whether there were some beds in the private hospital across the road. Everyone seemed to think this was a good idea and within minutes (having waited for another 7 hours) was finally wheeled across the road to a private room with lower chances of being infected again and close to the oncology services that I might need.
My medication is six hourly and so there is a cycle of 6:00 am then midday, then 6:00 pm and midnight and so on. Dr Y is expected to visit in the morning and the blood analyses will be completed so we should know more then.
Went to sleep. Temperature seems to have returned to normal at least for the time being."
Thursday, July 19, 2007
The biopsy result is back!
The mystery deepens! Thankfully the biopsy results from the endoscopy have proved to be negative - so the original questions remain - what DID the PET scan pick up and what is that lump in my lung?
If you think it's fun to remain in a state of high anxiety for weeks at a time you would be wrong.
There is a momentary relief in news like this but as the implications sink in the questions just increase!
Sigh!
If you think it's fun to remain in a state of high anxiety for weeks at a time you would be wrong.
There is a momentary relief in news like this but as the implications sink in the questions just increase!
Sigh!
Thursday, July 12, 2007
It's still a "wait and see" situation.
For those who are interested - I have had my endoscopy and the initial results are encouraging - there is some swelling and some inflammation, but no visually obvious cancer. Biopsies were taken and it will be at least a week or two before the results are back - so here is hoping.
Meanwhile with respect to the mass in the lung - the best way to see what that is will be to wait to have another CT scan and then see whether the mass has grown or not. If it has then getting some chemo therapy is really indicated as radiation treatment may not be possible for this area.
So we are no wiser today than we have been for the last few months.
Meanwhile with respect to the mass in the lung - the best way to see what that is will be to wait to have another CT scan and then see whether the mass has grown or not. If it has then getting some chemo therapy is really indicated as radiation treatment may not be possible for this area.
So we are no wiser today than we have been for the last few months.
Monday, July 02, 2007
Medicare on Line?
Went to have a look at the Medicare site today just to see if there was anything new there and lo and behold there was. Lots of new pages specially modified for an end of financial year launch by the look of them.
Some new services seem to be available on line. Following registration a person can actually access quite a few services on line.
I have no idea whether people will welcome this service or not. For someone in a situation where they would have to drive a fair distance to access a Medicare office and then actually spend loads of time waiting in a queue for some simple service, this will prove to be a boon.
I suspect that like Centrelink before it, Medicare Australia has learnt that the cost of an on line transaction is substantially cheaper than to use the post and other facilities.
So if you want to save the government money and have some convenience from your own home then sign up.
If you want to keep more public servants at work and actually spend less time on your computer then you may have some issues to consider.
The basic rule of 'caveat emptor' still applies - the government never seems to give anything away unless it can offset the costs somewhere else, so I suggest that before anyone signs up, they also consider what if any 'traps' the government has set for the unwary player.
If you currently get a service from Medicare through the post then I suspect you will have to give it up to get the on line service.
I will consider my options very carefully before I subscribe to any new "freebie."
Then again I used to work for government so I have a right to be suspicious!
Some new services seem to be available on line. Following registration a person can actually access quite a few services on line.
I have no idea whether people will welcome this service or not. For someone in a situation where they would have to drive a fair distance to access a Medicare office and then actually spend loads of time waiting in a queue for some simple service, this will prove to be a boon.
I suspect that like Centrelink before it, Medicare Australia has learnt that the cost of an on line transaction is substantially cheaper than to use the post and other facilities.
So if you want to save the government money and have some convenience from your own home then sign up.
If you want to keep more public servants at work and actually spend less time on your computer then you may have some issues to consider.
The basic rule of 'caveat emptor' still applies - the government never seems to give anything away unless it can offset the costs somewhere else, so I suggest that before anyone signs up, they also consider what if any 'traps' the government has set for the unwary player.
If you currently get a service from Medicare through the post then I suspect you will have to give it up to get the on line service.
I will consider my options very carefully before I subscribe to any new "freebie."
Then again I used to work for government so I have a right to be suspicious!
Wednesday, June 27, 2007
Update
I have been receiving some inquiries from people concerned about my welfare urging me to spend more time scribbling a few notes about what's happening to me.
So first - let me apologise for not keeping you informed.
The brief answer to your inquiries is nothing is happening right now.
I have some appointments scheduled to have an endoscopy so that the snake can be slid down my throat and the doctors can see what they can see from inside. If there is anything there then they will take a biopsy and have this analysed and then we will be better informed.
Meanwhile - I have also found a thoracic surgeon who may well be willing to see me however I suspect that the sequence of events needs to be:
a) have the endoscopy and see what if anything this find or adds to the information listing
b) make an appointment with the thoracic surgeon or at least communicate with him about what's been happening and ask for a preliminary interview so that he can become familiar with the situation to this point.
c) to wait until we can actually obtain a new CT scan and see what if any changes have taken place
d) based on the results of this scan have yet another discussion with the thoracic surgeon to see if what is in the lungs needs to be operated on either to find out for sure what it is and/or to remove it - if at all possible and hope that this does the job.
I am still of course communicating with my doctors and there will be a second opinion which I will be obtaining within a couple of weeks from yet another oncologist to see what if any other views can be obtained about the future.
Meanwhile, I am taking my medicines, and occasionally taking a paracetamol pill (pain killer) to deal with the pain in the shoulders that I am currently attributing to arthritis.
I hope that this puts everyone into the picture - at least to the extent that I can provide it.
More as and when events unfold!
So first - let me apologise for not keeping you informed.
The brief answer to your inquiries is nothing is happening right now.
I have some appointments scheduled to have an endoscopy so that the snake can be slid down my throat and the doctors can see what they can see from inside. If there is anything there then they will take a biopsy and have this analysed and then we will be better informed.
Meanwhile - I have also found a thoracic surgeon who may well be willing to see me however I suspect that the sequence of events needs to be:
a) have the endoscopy and see what if anything this find or adds to the information listing
b) make an appointment with the thoracic surgeon or at least communicate with him about what's been happening and ask for a preliminary interview so that he can become familiar with the situation to this point.
c) to wait until we can actually obtain a new CT scan and see what if any changes have taken place
d) based on the results of this scan have yet another discussion with the thoracic surgeon to see if what is in the lungs needs to be operated on either to find out for sure what it is and/or to remove it - if at all possible and hope that this does the job.
I am still of course communicating with my doctors and there will be a second opinion which I will be obtaining within a couple of weeks from yet another oncologist to see what if any other views can be obtained about the future.
Meanwhile, I am taking my medicines, and occasionally taking a paracetamol pill (pain killer) to deal with the pain in the shoulders that I am currently attributing to arthritis.
I hope that this puts everyone into the picture - at least to the extent that I can provide it.
More as and when events unfold!
Thursday, June 07, 2007
I am not normally and indecisive person but . . . .
I am not normally and indecisive person but . . . .
On this occasion I have to admit I am stumped.
Following discussions with my radiation oncologist I am not entirely sure I am further advanced with information about what is going on nor able to express what I would like to do about things.
Let me explain.
On the one hand it is absolutely clear that in the lung area there is a small 22 mm irregular mass that the radiologist who did the CT scan suggests is suspicious of being a metastasis.
Following the PET scan the radiologist there suggests that since the mass did not absorb the radioactive glucose it is more likely to be benign.
What is incontrovertible is that this mass did NOT exist in the lung area when the previous scan was taken in December.
So if it is NOT a new growth of the cancer then what could it be?
Well it is remotely possible that it is some scar tissue - but I am told this is unlikely. It is also possible that it is a cancerous growth which has nothing to do with the original cancer and so may well be benign as a result.
On the other hand it could be a growth that is so fibrous that it does not absorb the contrast medium and since the growth that was in the lymph nodes last year was also negative to a PET scan and was unable to be tested by means of a biopsy because it was too fibrous in nature. So it it possible that this new growth in the lung is also cancerous and also fibrous in nature and so not absorbing the radioactive glucose.
One really sure way of finding out what it is would be to ask for surgery to remove it and then check to see. Given that this would create hazards of its own - after all, any operation is a risk is this worth while? One could of course ask for a biopsy using a fine needle biopsy, but if the mass is once again as fibrous as the last one was, then there would be no result, for quite a bit of risk - for example a collapsed lung and/or complications.
Another pretty sure way of finding out what's going on is to wait and see and have a CT scan in 3 months after the one in April and then check to see what if any changes have taken place.
Obviously if the mass is benign then it should not have grown - if of course it is not benign then you have given the cancer a chance to take an event better hold and possibly to seed itself elsewhere as well.
There is of course no reassurance that the cancer has not already spread elsewhere, but is still in such microscopic form that it is still undetectable.
So let's look at the other site where there is some problem - at the apex of the lung and in the area which is where the remnants of the oesophagus and the stomach were joined. The scans show, on the one hand undifferentiated and diffuse results - ie there is not a discernible mass there at present, but there is something going on because the area did absorb the radioactive glucose.
One explanation is that after radiation treatment scar tissue can form for some years after the end of the treatment and this scar tissue could be responsible for what is showing up in the scans. On the other hand it could also be a recurrence of the cancer or more likely something that was not entirely eradicated by the treatment and the surgery. Once again if this grows then there is not much room to manoeuvre in there and there are heaps of pretty vital things that you need to keep on breathing in the area.
So once again you can check with an endoscopy what is happening inside the tubes, but this will not show what is happening on the outside of both the airway and what's left of the oesophagus nor indeed what if anything is happening in some of the major blood vessels in the area.
So if it is scar tissue - well and good, if not there is really no great and easy way to tell.
Meanwhile the cancer markers in the blood tests did not show any elevation and so we did decide to have another test today to see if these have increased - as they are most likely to be elevated if the things are active cancers.
If they are, then we know for certain that the cancer is back in at least one or more spots.
If the test is negative it still does not rule things out.
If there is more than one spot is in question then there are some other realities that have to be faced.
In the first place it is not possible to irradiate the areas that have already been treated - the safe dosage levels would be exceeded and this could actually make things worse rather than better.
Also if there is nothing to cut out then chemo therapy seems to be the only alternative and this too has a number of downsides - besides the bleeding obvious which is that it is particularly nasty to take into your system some of the most toxic chemicals on the planet. The stuff may well kill fast replicating cells like cancer cells, but it also kills you immune system and plays havoc with the kidneys which have to clear all this crap and also plays havoc with the bone marrow cells. Indeed I am advised that when you have had three of four chemo therapy treatments even this is no longer effective because your system cannot tolerate any more of it.
What's worse of course, is that chemo therapy lasts around 3 months and while it MAY give you some remission time, during its course it makes life not all that worth living.
So I have been asked questions about "quality of life" issues.
If I wait for the next few weeks until such time as we can have a CT scan again then we will be able to see whether the mass has grown or not. If it has then we can start the chemo therapy and hope that it reduces the growth and gives some remission time. Meanwhile there are at least a few weeks during which I can actually DO things.
If I start chemo therapy immediately then of course after the first week, the side effects usually kick in and once again I will be subject to increasing vulnerability to illness of any other kind as the white cells die along with the cancer cells.
So my question is how the hell do you make this decision? What do you base your judgement on?
Either way it seems to be what the Americans call a 'crap shoot' and one that is likely to produce not all that pleasant a journey along the way and certainly reduces the chances of yet another round of treatment thereafter especially if it does not succeed.
Then we have the situation I am afraid I am very familiar with where the ill person is in a bed and not really with it for some time before the end happens.
All in all not a great set of choices.
Getting a second opinion is possible - with all the consequent delays that this means and give the same evidence is there really a hope that a different conclusion will be drawn. I guess it's possible.
So this is the situation I find myself in at the end of today. Frankly I have NO idea what to do next. It's not that I am paralysed with fear, it's more that I can't for the life of me see what other possibilities another doctor could suggest.
Anyway I do not have all that much time to muse about it all - I will have to make a decision in some direction very soon - and the only one that offers any 'time out' is the one that suggests that I adopt a wait and see attitude for the next few weeks and not rush in to the only treatment that seems to be on offer at present which is the chemo therapy.
I am NOT going to ask anyone what they would do in my place - but for anyone who has had some risk management experience in their working life - THIS would be a wonderful opportunity to put the formulas into action!
On this occasion I have to admit I am stumped.
Following discussions with my radiation oncologist I am not entirely sure I am further advanced with information about what is going on nor able to express what I would like to do about things.
Let me explain.
On the one hand it is absolutely clear that in the lung area there is a small 22 mm irregular mass that the radiologist who did the CT scan suggests is suspicious of being a metastasis.
Following the PET scan the radiologist there suggests that since the mass did not absorb the radioactive glucose it is more likely to be benign.
What is incontrovertible is that this mass did NOT exist in the lung area when the previous scan was taken in December.
So if it is NOT a new growth of the cancer then what could it be?
Well it is remotely possible that it is some scar tissue - but I am told this is unlikely. It is also possible that it is a cancerous growth which has nothing to do with the original cancer and so may well be benign as a result.
On the other hand it could be a growth that is so fibrous that it does not absorb the contrast medium and since the growth that was in the lymph nodes last year was also negative to a PET scan and was unable to be tested by means of a biopsy because it was too fibrous in nature. So it it possible that this new growth in the lung is also cancerous and also fibrous in nature and so not absorbing the radioactive glucose.
One really sure way of finding out what it is would be to ask for surgery to remove it and then check to see. Given that this would create hazards of its own - after all, any operation is a risk is this worth while? One could of course ask for a biopsy using a fine needle biopsy, but if the mass is once again as fibrous as the last one was, then there would be no result, for quite a bit of risk - for example a collapsed lung and/or complications.
Another pretty sure way of finding out what's going on is to wait and see and have a CT scan in 3 months after the one in April and then check to see what if any changes have taken place.
Obviously if the mass is benign then it should not have grown - if of course it is not benign then you have given the cancer a chance to take an event better hold and possibly to seed itself elsewhere as well.
There is of course no reassurance that the cancer has not already spread elsewhere, but is still in such microscopic form that it is still undetectable.
So let's look at the other site where there is some problem - at the apex of the lung and in the area which is where the remnants of the oesophagus and the stomach were joined. The scans show, on the one hand undifferentiated and diffuse results - ie there is not a discernible mass there at present, but there is something going on because the area did absorb the radioactive glucose.
One explanation is that after radiation treatment scar tissue can form for some years after the end of the treatment and this scar tissue could be responsible for what is showing up in the scans. On the other hand it could also be a recurrence of the cancer or more likely something that was not entirely eradicated by the treatment and the surgery. Once again if this grows then there is not much room to manoeuvre in there and there are heaps of pretty vital things that you need to keep on breathing in the area.
So once again you can check with an endoscopy what is happening inside the tubes, but this will not show what is happening on the outside of both the airway and what's left of the oesophagus nor indeed what if anything is happening in some of the major blood vessels in the area.
So if it is scar tissue - well and good, if not there is really no great and easy way to tell.
Meanwhile the cancer markers in the blood tests did not show any elevation and so we did decide to have another test today to see if these have increased - as they are most likely to be elevated if the things are active cancers.
If they are, then we know for certain that the cancer is back in at least one or more spots.
If the test is negative it still does not rule things out.
If there is more than one spot is in question then there are some other realities that have to be faced.
In the first place it is not possible to irradiate the areas that have already been treated - the safe dosage levels would be exceeded and this could actually make things worse rather than better.
Also if there is nothing to cut out then chemo therapy seems to be the only alternative and this too has a number of downsides - besides the bleeding obvious which is that it is particularly nasty to take into your system some of the most toxic chemicals on the planet. The stuff may well kill fast replicating cells like cancer cells, but it also kills you immune system and plays havoc with the kidneys which have to clear all this crap and also plays havoc with the bone marrow cells. Indeed I am advised that when you have had three of four chemo therapy treatments even this is no longer effective because your system cannot tolerate any more of it.
What's worse of course, is that chemo therapy lasts around 3 months and while it MAY give you some remission time, during its course it makes life not all that worth living.
So I have been asked questions about "quality of life" issues.
If I wait for the next few weeks until such time as we can have a CT scan again then we will be able to see whether the mass has grown or not. If it has then we can start the chemo therapy and hope that it reduces the growth and gives some remission time. Meanwhile there are at least a few weeks during which I can actually DO things.
If I start chemo therapy immediately then of course after the first week, the side effects usually kick in and once again I will be subject to increasing vulnerability to illness of any other kind as the white cells die along with the cancer cells.
So my question is how the hell do you make this decision? What do you base your judgement on?
Either way it seems to be what the Americans call a 'crap shoot' and one that is likely to produce not all that pleasant a journey along the way and certainly reduces the chances of yet another round of treatment thereafter especially if it does not succeed.
Then we have the situation I am afraid I am very familiar with where the ill person is in a bed and not really with it for some time before the end happens.
All in all not a great set of choices.
Getting a second opinion is possible - with all the consequent delays that this means and give the same evidence is there really a hope that a different conclusion will be drawn. I guess it's possible.
So this is the situation I find myself in at the end of today. Frankly I have NO idea what to do next. It's not that I am paralysed with fear, it's more that I can't for the life of me see what other possibilities another doctor could suggest.
Anyway I do not have all that much time to muse about it all - I will have to make a decision in some direction very soon - and the only one that offers any 'time out' is the one that suggests that I adopt a wait and see attitude for the next few weeks and not rush in to the only treatment that seems to be on offer at present which is the chemo therapy.
I am NOT going to ask anyone what they would do in my place - but for anyone who has had some risk management experience in their working life - THIS would be a wonderful opportunity to put the formulas into action!
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!
Tuesday, April 10, 2007
Vitamin A Inhibitors
What an interesting piece of research:
to be found at:
http://www.mrc.ac.uk/consumption/groups/public/documents/content/mrc003468.pdf
to be found at:
http://www.mrc.ac.uk/consumption/groups/public/documents/content/mrc003468.pdf
Wednesday 17 January 2007
Scientists have delved into the underlying structure of the cells that line the gullet and found a way to potentially prevent a type of cancer of the oesophagus. The scientists from the MRC Cancer Cell Unit are hoping their new found understanding of the cellular origin of the cause of oesophageal adenocarcinoma will help pave the way to new therapies which could even prevent the cancer developing.
Oesophageal adenocarcinoma is on the rise in the UK and throughout the western world, eight-fold in the last 30 years. It develops from pre-existing abnormalities in the lining of the oesophagus, a condition called Barrett’s oesophagus. This condition causes the scaly lining of the oesophagus to be replaced by a glandular lining, like that normally found in the stomach or intestine.
Up until now the nature and origin of the cell change which causes Barrett’s had not been known. Now, a team of scientists led by Dr Rebecca Fitzgerald has found that treating the normal scaly tissue with vitamin A provokes this change to the Barrett’s lining tissue.
Furthermore they have shown that this change occurs below the top layer of the cell and is still visible even when that layer is removed.
When the scientists later treated the altered tissue with vitamin A inhibitors, they found the cells reverted back to their previous state.
Dr Rebecca Fitzgerald said:
“We are very excited about these findings. Vitamin A inhibitors could allow us to reverse Barrett’s oesophagus which would prevent the lesions it provokes from causing oesophageal adenocarcinoma.”
“Until now it had been thought the changes to the cells in the oesophageal lining was limited to the top layer of those cells, the epithelium. This research shows that the change is actually more fundamental. This ties in with recent work in many cancer areas which suggests that we have neglected the cell environment for too long in our thinking about cancer.”
The findings are published in GUT and will be discussed at the Barrett’s Oseophagus National Symposium on Wednesday 17th January 2007.
Tuesday, March 27, 2007
I promised to bring this to attention
While at a conference last week I found out about some research that might be invaluable for future carers of Cancer Patients.
Have a look at this URL http://www.actcancer.org/carers%20survey.htm
Sunday, March 25, 2007
Saturday 24th March 2007
A few of the Cancer Voices ACT faces were at the Forum organised bythe Cancer Council ACT today.Attached is a photo. From left toright:
Val L, Russell McG, Denis S, Peter G
Autumn Cancer Forum - Saturday 24 March 2007
A free information day for people of all ages with any kind of cancer diagnosis, their partners, families and carers, health professionals and other interested people.
| Time: | 9:00am to 3:00pm |
| Venue: | National Library of Australia, Parkes |
I was really looking forward to this forum, and I was really excited by the subjects to be presented and especially some of the speakers who were featured on my copy of the program.
When I got there I experienced disappointment as I realised that some of the people I was looking forward to hearing were no longer available and had been replaced by the time that the great day rolled around.
Still, "that's life," I thought, "drop the attitude and listen!"
The introduction went off well enough, even though the air conditioning in the room was off line and so the combined body heat of the attendees started to make life uncomfortable, as the heat rose and the prospects of dehydration loomed.
The first presentation on "Nutrition and Well Being" was going to be, for me at least, one of the highlights of this forum.
Alas, the original presenter was replaced (at short notice I suspect) by a young nutritionist that I had never heard of. As she made her presentation I confess to sitting there and thinking that the information I was getting was of the most basic sort. I felt let down and very tempted to simply get up and leave.
Something I had been looking forward to for at least a week was, for all practical purposes ruined for me, as the material was irrelevant and generic pap.
In combination with the lack of functional air conditioning I literally started to feel hot under the collar, uncomfortable, dehydrated and irritable.
Sigh!
The second presentation, on "The role of complementary medicine and lifestyle in cancer
treatment." Dr Craig Hassed of Monash University was excellent.
The presentation was spiced with humour, anecdotes, personal reflections and what I considered to be sagacious advice.
While I still felt hot under the collar it was now due to the lack of cooling in the room and not irritation.
The third speaker - another change in the program was also exceptionally informative.
The subject he spoke about, namely Pain Management in a palliative setting, was most reassuring.
I guess as someone who has been diagnosed with and treated for cancer I have learnt to experience the ups and downs associated with pain during the course of treatments and recovery. I know that one of my deepest fears has been that as and when my cancer returns and takes it's inevitable course, my end days or longer, would be filled with unremitting pain and anguish.
It was with considerable relief that I heard that pain can be identified and controlled and that the suffering that I have had nightmares about, can be managed. I have to say that while I am not by any stretch of the imagination looking forward to even the concept of dying, it was reassuring to know that there are really competent people out there in the community that I live in who will ensure that my inevitable demise does not have to be filled with pain and suffering!
The next presenter A/Prof Desmond Yip was, as usual, and in my opinion brilliant. He had to cover the topic "Update on cancer related clinical trials". Anyone who is familiar with statistics and charts and number crunching will be aware that this is not the most entertaining topic.
In spite of the dry subject matter I thought that Desmond was able to squeeze as much as any human being could into the small slice of time that he had been allocated and I have to confess to feeling light headed as I reeled under the weight of the information with which I had been presented and depressed by the fact that so many studies result in either no positive outcome or are abandoned because they prove to be too dangerous to continue. Nevertheless my spirits were somewhat restored by the realisation that there are many dedicated people out there doing their best to find treatments and where possible cures for cancers and that the work is fast and furious and unfortunately very very expensive!
The next presenter, Prof. Malcolm Whyte was a surprise. No notes, no overhead presentation and no guff! His subject matter was "Life and Death" which in his view would probably have been better defined as "Thank God for Death"
What Prof Whyte succeeded in doing - at least for me is to bring home the point that everything living, to live, actually requires death on a grand scale to take place around the living organism indeed that it is when things do NOT die on schedule that we really have some issues. Cancer is one of those things. Cells that are supposed to die or be killed off as aberrant are not and what's worse they kill off healthy cells and compete with them for life and without intervention succeed only to eventually die when they have killed off their host.
I did not think I would like this presentation I have to confess I squirmed when the subject was announced. However by the end of the presentation I was able to place my own potential demise into the 'big picture' and actually see - if not necessarily welcome - my end state as being something necessary, normal and natural. In a bizarre sort of way it was helpful to have that stage of acceptance outlined before I really had to experience it.
I am afraid that for one presentation on Sexuality and Cancer I simply had to leave the room and get water to drink as my level of dehydration had passed to the point I could no longer deal with and the refreshing coolness of the air outside the presentation room was so welcoming that I stayed out for this whole presentation.
On returning to the room refreshed and ready to hear the last presenter on "Survivorship: getting back into life after cancer treatment" I was ready to be entertained with a thoroughly upbeat end to the conference on a topic that I thought of as the real reason why some of us were still able to attend and listen. We are survivors!
I was polite, I was in agony for the poor presenter as she struggled to understand and use the technology, I was appalled that anyone would face an audience of this kind and simply read off the PowerPoint Presentation slides instead of using them as background material to give the audience a glimpse of the high points. Eventually I am afraid that my patience was exhausted and I left the hall to wend my way to the outside of the venue where it seemed that even God was crying as there was a quite ferocious downpour of rain and headed to my car to finally get home and get re hydrated.
One lesson I have re-learnt from this experience. When you have a conference make SURE your first and last speaker are fabulous. One will keep the audience in their seats and be glad they have come and the second will leave them wanting more and anxious to come to another seminar or forum you organise.
If however you have the beginning marked by a lack lustre performance and the end characterised by a similar experience then there is a tendency for your audience to be less forgiving.
Wednesday, February 14, 2007
Return from a visit to Sydney
Well the news is in - the implant was only partially successful! Alas the GoreTex implant has not had the fully desired effect and has not managed to bring the right hand side vocal cord sufficiently into the midline position to enable the left hand side to close fully - net result? Still no real voice. Can something be done? Yes but at what cost? We could do the operation all over again I suppose. Not really a good idea though and certainly not worth the cost according to the specialist. So what I have now is likely to be what I am stuck with.
Of course there is the hope that the Speech Therapist will be able to suggest some techniques to make a not so great situation better - but frankly I doubt it - while I think a lot of her skills I did not notice the words 'miracle worker' on her diploma.
So for those who wish to listen to the traffic rather than me - just take me for a walk along any busy street and your wish will be rewarded. If you want to drown me out all you have to do is to raise your voice above a whisper and you will succeed.
Still at least I am still living. Next stop yet another scoping to see what they can see down that pipe!
Of course there is the hope that the Speech Therapist will be able to suggest some techniques to make a not so great situation better - but frankly I doubt it - while I think a lot of her skills I did not notice the words 'miracle worker' on her diploma.
So for those who wish to listen to the traffic rather than me - just take me for a walk along any busy street and your wish will be rewarded. If you want to drown me out all you have to do is to raise your voice above a whisper and you will succeed.
Still at least I am still living. Next stop yet another scoping to see what they can see down that pipe!
Thursday, February 08, 2007
Some Good News and Some Bad News
Isn't it always the way? Some things change and some things stay the same.
On the 4th of February I celebrated the third anniversary of a dreaded day - the day that I was diagnosed with oesophageal cancer. Why did I celebrate that, you may well ask? Well that was also the day when I was told that I probably had three months to live - three years later I am certainly glad that that was wrong.
Make no mistake about it though - given the insidious and horrifying statistics relating to this illness, each day that you are alive is a bonus and each day that you survive is - at least in my view, a new miracle for which to be grateful.
Apart from being alive there is also something else to be grateful for. This is in general a diminution of pain. If you have issues with the basic functions of living like breathing, being able to eat or drink and to top it all off you also have massive and inescapable pain then there are days when the whole notion of living becomes moot. You actually do ask silly questions like WHY? What's the point? After all if you can't even do the basics and any activity is akin to self torture - what really is the point of going on?
I suspect that the answer lies in a singular hope that the pain will end and that a sense of normalcy will return.
What the hell does that mean?
Well for those out there who thankfully have never had a major illness, just once - when you have a moment, sit down in a quiet room and mentally do a search on yourself. See if there is anything you notice that seems to be out of whack with how you normally feel. If during and immediately after this process you cannot find anything and put the whole idea down to the ravings of a lunatic - do me a favour and just listen to your body purring along without aches and pains and seemingly without effort.
That's normal!
If you can actually get a mental image of that state then store it and keep it as a reference point. THAT is normal!
It's a state in which all of your bodily functions are simply getting on with the jobs that they have been assigned and because it is normal - you can get on with the job of managing your life - leaving all that stuff to burble along on automatic pilot. And amazingly it will continue to fly almost effortlessly. Indeed the only time you begin to realise how wonderful that state can be is when something (usually more than just one thing) stops working effortlessly and starts to become an effort and usually a painful effort at that.
It's then you will wish for the state you were in before. OOPS! Too late!
If I can offer someone else some advice - when you notice yourself staying up half the night with reflux and it's not just once when you have had a really heavy night out, but more often than you like, when the store bought medication that used to stop the gastric juices from rising up and trying to eat you alive THAT is the time to have a check! Go and see if there is anything wrong DO IT NOW - I know it sound silly to go to a doctor for a just a belly ache - expensive too.
However DO it anyway! If your doctor looks down your throat with a tube and pronounces you look OK breathe a sigh of relief and think about your food and drink intake habits - you still have time to change. If the doctor tells you that there is a concern DEAL WITH IT EARLY!
The biggest killer with this illness is that people leave it alone until it's too late! After all it was only some reflux - and it was a heavy meal, too much fat and oil, with too much alcohol and too many cakes etc.
Yeah they were my excuses, it was only a tummy ache after all!
Now when I think back and think that had I done something about things earlier I might actually be taking advantage of an increase in the life span of humans rather than count my days.
Regret is an emotion you can do without!
On the 4th of February I celebrated the third anniversary of a dreaded day - the day that I was diagnosed with oesophageal cancer. Why did I celebrate that, you may well ask? Well that was also the day when I was told that I probably had three months to live - three years later I am certainly glad that that was wrong.
Make no mistake about it though - given the insidious and horrifying statistics relating to this illness, each day that you are alive is a bonus and each day that you survive is - at least in my view, a new miracle for which to be grateful.
Apart from being alive there is also something else to be grateful for. This is in general a diminution of pain. If you have issues with the basic functions of living like breathing, being able to eat or drink and to top it all off you also have massive and inescapable pain then there are days when the whole notion of living becomes moot. You actually do ask silly questions like WHY? What's the point? After all if you can't even do the basics and any activity is akin to self torture - what really is the point of going on?
I suspect that the answer lies in a singular hope that the pain will end and that a sense of normalcy will return.
What the hell does that mean?
Well for those out there who thankfully have never had a major illness, just once - when you have a moment, sit down in a quiet room and mentally do a search on yourself. See if there is anything you notice that seems to be out of whack with how you normally feel. If during and immediately after this process you cannot find anything and put the whole idea down to the ravings of a lunatic - do me a favour and just listen to your body purring along without aches and pains and seemingly without effort.
That's normal!
If you can actually get a mental image of that state then store it and keep it as a reference point. THAT is normal!
It's a state in which all of your bodily functions are simply getting on with the jobs that they have been assigned and because it is normal - you can get on with the job of managing your life - leaving all that stuff to burble along on automatic pilot. And amazingly it will continue to fly almost effortlessly. Indeed the only time you begin to realise how wonderful that state can be is when something (usually more than just one thing) stops working effortlessly and starts to become an effort and usually a painful effort at that.
It's then you will wish for the state you were in before. OOPS! Too late!
If I can offer someone else some advice - when you notice yourself staying up half the night with reflux and it's not just once when you have had a really heavy night out, but more often than you like, when the store bought medication that used to stop the gastric juices from rising up and trying to eat you alive THAT is the time to have a check! Go and see if there is anything wrong DO IT NOW - I know it sound silly to go to a doctor for a just a belly ache - expensive too.
However DO it anyway! If your doctor looks down your throat with a tube and pronounces you look OK breathe a sigh of relief and think about your food and drink intake habits - you still have time to change. If the doctor tells you that there is a concern DEAL WITH IT EARLY!
The biggest killer with this illness is that people leave it alone until it's too late! After all it was only some reflux - and it was a heavy meal, too much fat and oil, with too much alcohol and too many cakes etc.
Yeah they were my excuses, it was only a tummy ache after all!
Now when I think back and think that had I done something about things earlier I might actually be taking advantage of an increase in the life span of humans rather than count my days.
Regret is an emotion you can do without!
Monday, January 15, 2007
The Chicken or the Egg question - revisited
ABC News brought this headline to our attention today:
Then as I read on I became more and more alarmed as the issue seems to have actually become more and more impenetrable.
Anti-cancer chicken eggs developed
With this announcement I thought it was all over. The argument about which came first - the chicken or the egg had finally been settled. It was the egg! Obviously.Then as I read on I became more and more alarmed as the issue seems to have actually become more and more impenetrable.
"British researchers say they have developed genetically modified chickens that can lay eggs that contain the proteins required to develop anti-cancer drugs."So . . . the chicken come first?
Wednesday, January 10, 2007
Is good "hot" food an answer to certain cancers?
Recent studies in the UK seem to show that there are properties in chillies that may actually help to prevent some cancer cells from growing and reproducing.
see http://news.bbc.co.uk/1/hi/health/6244715.stm
Some of the content of this article includes the following:
see http://news.bbc.co.uk/1/hi/health/6244715.stm
Some of the content of this article includes the following:
Scientists have discovered the key to the ability of spicy foods to kill cancer cells.They found capsaicin, an ingredient of jalapeno peppers, triggers cancer cell death by attacking mitochondria - the cells' energy-generating boiler rooms.
The research raises the possibility that other cancer drugs could be developed to target mitochondria.
The Nottingham University study features in Biochemical and Biophysical Research Communications.
The study showed that the family of molecules to which capsaicin belongs, the vanilloids, bind to proteins in the cancer cell mitochondria to trigger apoptosis, or cell death, without harming surrounding healthy cells.
Now all I have to do is to be able to figure out how, with some of your stomach and most of your oesophagus removed how it is possible to actually ingest the drug. When you eat hot food the after effects on various parts of the anatomy would clearly make this difficult.
Anyone out there with any suggestions?
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