Progress Notes July 4th

Well, for want of anything better, we in Australia get a jump over the Americans on their Independence Day - it already July 4th here while they sleep through July 3rd.

Today marks a high point in this latest round of treatment - the first four days of chemo therapy in combination with the radio therapy are over. So in one sense (and at least for the time being) it is also my personal 'independence day'. I no longer have to endure toxic chemicals being passed into my body while I sit patiently allowing this stuff to enter the blood stream drip by drip. It will now be a terrible two days while the main effects are leached OUT of the body through the normal means and then I have to face the gruelling commute - daily - to the hospital to get radiation therapy.

It actually takes longer to get there, park and get back than it does to receive the treatment. I have already asked what I am looking forward to and have been told the brutal truth (after the regular bull that it is of course different for each person) that in the third week (ie about half way through the 30 days of this treatment) I will have exceeded the tolerance dose of the radiation and all sorts of possible pain and anguish will commence or at least is likely to commence from then on.

What to look forward to?

Lack of sleep, pain, inability to swallow, possible side effects that I do NOT even want to think about and of course the reality that I am going to be a literal pain in the neck to my loved ones as they try hard to be nice and I will be out of control of everything, but my own reactions to what I am experiencing.

It is simply amazing how introverted and selfish one can become when in the 'sick mode'

Being a carer I suppose if probably the hardest task in the world and if the person being cared for is someone who has been totally independent all of their lives and unable to really ask for any support then I suspect that the task is made even harder.

I know that in my case whenever I am asked what I want or what I need - my honest answer is that I have no idea! I know what I am feeling and I know that above all else what I would really like is to get back to feeling 'normal', but since this is only possible with a complete body transplant - not something they have perfected as yet - (at least not to my knowledge - though some politicians I see around the place seem to have been re-cycled a lot) I guess I do not really know how to answer the question.

At present I am taking every opportunity to do the things that I can manage to do and one of those is to record some of the thoughts that I am having. Being at home and really unable to speak with the lack of mobility of the vocal chord that I have left means that being able to record the thoughts in writing and then at least publish them so that anyone who cares to look can see them is a form of catharsis or therapy.

There is little else that one CAN do besides making sure that the various aspects of hygiene are followed, that business that needs to be done is done and that as time passes each moment is savoured and used to the full.

Meanwhile I will eat and drink and be merry while I can - because as sure as God made little apples THAT state of being is not going to last!

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.

An update as at the end of the financial year

Just started a course of Chemo therapy as an aid to Radio Therapy. Four days of 5FU with Folinic Acid, Dexmethasone and Ondansetron together with a daily dose of gamma radiation some four hours after the infusion of the various jungle juices.

Then 23 more days of radiation each and every day except weekends and of course the occasional Wednesday when they have to bring the machines off line to maintain them and then three more days of radiation once again proceeded with the Chemo therapy regime.All in all 30 days of gamma radiation.

I suspect that I will forever after this be easy to locate anywhere on the planet - all people will need is a Gieger counter. (Wasn't there a comic book where the hero got excess gamma radiation and was transformed into the incredible Hulk?)

Apparently the chemo is supposed to increase the effectiveness of the radiation treatment by 10% (according to the literature)

So it's back to the regime of having few white cells left and so being exposed to any and all germs in my environment, with no resistance, I suspect that what little hair I had left from the last time will once again fall out and will require beanies during the winter. Still there is an up side - it reduces hair cutting costs which have gone through the roof!

The one good thing so far that I have noticed is that the dexmethasone being a steroid is actually helping to deal with the arthritis that appears to be settling in - what a pity that it will only be for four days!

My one vocal chord is having a stressful time because I am trying to give it instructions to learn from the experience of Nana Mouskouri who apparently had only one vocal chord and still managed to make some fabulous music.

My chord tells me that it's not the same thing. In the first place I have both the chords left intact it's just that one cannot perform as the controls to the nerves have been cut, second that I am not a woman and thus cannot multitask and third and most important I lack her talent.

It's cruel when your body can actually argue with you and given the inability to vocalise you cannot argue back! (maybe it's the chemo talking)