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."