14 August 2006 - the last day of treatment,

Pete's Points
It is not often that cancer is a cause of celebration.

Today marks another turning point in my 'adventures' with this disease. I am about to go into the hospital for the last round of treatment - both chemo and radio therapy, hopefully for the last time.

Amazingly, no one has bothered to tell me what happens from here on in. I assume that I go home and simply await the finalisation of the treatment effects and gradually recover back to where I was before the latest attack of the 'beast' took place.

It is amazing to me that there is an assumption in the medical world that the patient will understand, by osmosis perhaps, exactly what will happen now. I mean it's all very well to assume that since you are alive there is at least a remote chance that this state of affairs will continue for at least a little while. It is all very well to assume that the radiation scars will start to heal over time, that the nausea from the chemo therapy regime will dissipate in around 48 hours and that the impact of the chemicals on the body will, over the next 6 months finally be reduced to the extent that they no longer matter.

What does this MEAN? What actually happens as these radiation scars heal? What will be left? What will I look like both from the outside and more importantly from the inside?

At present I know that I have this area around the parts that are being treated that have changed colour and texture and now looks like a giant strawberry birthmark on the neck. I suppose that in different circumstances I would be able to compete with Michael Gorbachov and his birthmark. His 'feature' is not due to any radiation from Chernobyl while mine is definitely due to the impact of x rays on my neck over thirty treatments. What will be the result of the operation to remove the lymph nodes and surrounding tissue in the neck and under the collar bone and the subsequent treatment by these x rays? What will remain there? Assuming that the tissue that is left and will regenerate is likely to be very different from what was there in the first place what if any impact will this have on my life?

Already we know that as a result of the condition and the subsequent operation and treatment there is a major problem with my vocal chords and my ability to speak. We also know that there is some hope that some of this impact can be corrected with speech therapy and if that fails with other treatment. What no one tells you or perhaps CAN tell you is what the likely outcome will be and over what time frame.

Does anyone out there have some 'plan' which they can give to the patient? A sort of road map that sets out the sorts of things that they might be able to expect or at least look out for in the journey ahead?

No idea - certainly something to ask about!

One of the things that concerns me is whether or not there is some proposed regime for checking to see if there are further metastases and if so, to catch them before they grow again to a size that can seriously endanger life.

The last time that I attended a PET scan it did not show the tumour as it should have. It showed some arthritic tissues and suggested that perhaps one of the other things that I need to consider is what the heck to do about this (provided I live long enough of course) but it did not show the tumour.

Now THAT is a worry. If a PET scan does not show a large tumour then can it be used to find any new occurrence or outbreak of the cancer? Once again this is really unclear and something that needs to be raised with the doctors. Obviously by the time that a person feels that something is wrong the chances are that the problem has gone from microscopic to something a damned sight larger and hence less controllable.

So what I want to know is what are the means for screening for a recurrence this time? Will it be blood tests that are used regularly? Will it be something else? Is there nothing that can be done and we just sit back and wait for the next occurrence and then ????.

Being proactive is all very well, but there is a need to be proactive with some tools that may actually enable something useful to happen.

In other words, I suppose that today will be a day when I get to ask some of my dreary questions and then deal with the look in the eyes and faces of the staff who are the recipients of these questions and their responses.

It is a very happy day in one respect to have reached the end of the 30 treatments. On the other hand it is also a frightening time because I have no idea what is likely to happen from here on in and so far no one has actually drawn a map that at least gives you some idea of the lay of the land.

Let's see what happens and I will report back on the outcomes that may be achievable!