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!

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.

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!

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 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."