Progress Notes - July 3 2006

I guess I have to provide the good news with the not so good news in these reports.

I started the latest round of treatments combining chemo and radio therapy just the other day and already have some renewed experience of the issues that arise with this regimen. The first two days of the combined chemo and radio therapy were doable. The weekend in between was painful in the extreme - in spite of the anti-nausea medication (stuff that really worked the last time I was going through all of this) on this occasion while it also works - I suppose, to minimise the effects there are still consequences from deliberately putting cyto-toxic materials into my system. A generic feeling of unwellness being just the tip of the iceberg. Nausea, while controlled, is there and it certainly does not lead to any ability to sleep easily.

While the medication is being given the dexmethasone manages to relieve some of the arthritic pain and the additional medication is of assistance in controlling the nausea. However in the roughly 48 hours following the cessation of the application of the chemo therapy two of the three drugs are also withdrawn with the result that the effects of the 5FU are more 'dramatic', if this is a possible expression.

There is simply no way that I am able to do anything more than try and cope with the side effects and it is only the knowledge (hope really when you are going through the process) that the effects WILL be reduced and that by the time that the third day arrives following the cessation of treatment some things will be returning - if not to normal, at least some semblance of more manageable normality.

It is thus really a problem to go back to the oncology unit and once again bare the arms to receive once again some more of the dreaded juice because there is now certain knowledge - reinforced by immediate experience that the side effects will not only start again - but once again continue AFTER the cessation of the treatment and THIS time - unlike the weekend break - there is not going to be any respite from the radio therapy.

A daily dose of gamma radiation (at least I presume it's gamma radiation) is poured into the body - in my case from four directions during the treatment period.

Let me describe to you, dear reader, the 'joys' of getting radio therapy these days.

As some of you may recall at the planning day I was fitted with a mesh mask which when heated moulded to my face shoulders and neck. It is this mesh which enables the radiologists to mark out exactly the spots they use for the targeting of the machinery.

There is a schedule of appointments organised and during the dual treatment the radio therapy has to be four hours after the chemo therapy to be at its most effective. Apparently there is a 10% additional efficacy for the whole treatment if they are combined in this way. I simply accept this data and because I want to maximise my chances of a positive outcome I am willing to endure the trials and tribulations that emerge as a result.

But. I digress.

Once you are called and escorted to the room in which the machine resides and underneath it is this highly mobile platform which is then set up to receive the patient. In my case I have to take off my shirt, glasses and remove any dentures I may have and then slip up on to the platform which has a headrest and a funny kind of board at the feet with two handles attached. When one wriggles into shape on the platform one is asked to grab hold of the handles and this act seems to immobilize the shoulders and keep the body more or less in the same position. The mask is then slid onto one's face and clipped into place. Measurements are taken to ensure that the locations and distances are as prescribed in the treatment plan and then the technicians leave the room with a polite "we will be back soon' and you are on your own with the machine.

I do not want to try and describe to you what it feels like to be strapped down on a platform virtually unable to move and then simply watch and hear the machine as it's pre-programmed directions, timing etc are all initiated.

While you lie there it seems to have a mind of it's own as it starts in the first location and send out the prearranged amount of controlled radiation for the prearranged number of seconds. Then it adjusts itself along the lines it has been programmed and rotates to the next location and the process commences again.

This takes place - in my case on four different locations for around 20-20 seconds for each burst - I sat around this period because I cannot look at my watch and since my heart is pounding along partly in fear and partly in anticipation I suspect that my sense of time is dilated.

Staying as still as possible is of course pro-indicated - after all there is no way you could possibly WANT to irradiate areas of the body that are NOT on the plan.

When the treatment is finished - it is likely that there are either digital images taken and/or xrays I guess to monitor what has been happening.

These are not pictures that will ever hang in MY rogues gallery I can tell you!

Then it's lowering the platform a quick exercise of the stomach muscles (if you have any) and off the table. Get back into the gear you came with, replace the items you have taken off and out the door with a cheery wave to the staff with some inane comment like - "Same time same bat channel tomorrow I guess?"

The it's back to the car park and to the car and the lonely drive home.

I suspect that this routine will vary over the next few days and weeks as I become possibly less able to fend for myself and need some assistance to get into the hospital for treatment and back home again. There is already a theoretical plan for this - but alas the people in the Community Services area who are supposed to ring to firm up the details have not yet been in touch - so with each day that passes the anxiety about this increases. Still, it's too early to worry just yet and since I believe in the concept of 'just in time planning' I am not worried - yet. However as the days pass I have already selected the day on which I will initiate preventative action to try and ensure that the services are there as planned or that I have an alternative way of getting to and from the treatments.

I look forward to Friday of this week by which time I should at least be getting over the impact of the chemo therapy even though the stuff will actually remain at least at residual levels within my body for at least 3 months!

Thus since at the end of this treatment regime I will have to see whether I can endure another 3 days of the chemo stuff along with the last days of the radio therapy it is actually another FIVE days of endurance until the major side effects disperse and by that stage the Lord only knows what other negative side effects will have to be endured. Still that's too far ahead to worry about today - so on the basis of one day at a time or one step at a time I am sure I will at least try and write about exactly what happens when it does, rather than speculate.

That's all for today folks - except to say that after the treatment I did go and shop for vegetables and associated food stuffs so that I can ask my partner to try and emulate my mother's chicken soup. She swore to her dying day that it was something that would at least soothe the impact of illness even if it did not have any magical medicinal properties.

About my voice - I am still barely able to do more than whisper and this not for terribly long periods. So I apologise to those who have wanted to call and chat and have found me 'indisposed'. It's not that I don't WANT to talk with you - it's just that at present I can't.