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!

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!