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12 - 18 February 2001
Fifth week: radiotherapy

12 February 2001:
Last Friday I received a letter from the hospital reminding me to pay my bills. I felt they're crazy and decided to take this letter with me today to settle the matter. Well, I was in for another surprise.

As I am not a hospital patient, but "only" an out-patient who takes advantage of the services offered by the hospital, I have to pay a certain proportion of my bills out of my private bank account. It adds up to roughly 30% of each bill, i.e. radiotherapy costs me about A$170.00 per week. I am entitled to put this sum into my tax declaration 2001 and I may receive a tax rebate (perhaps, but I don't know how much etc.).

If I would be admitted to the hospital, my private health insurance would cover all costs, however I would cause much higher costs that way as a day in hospital costs around A$600.00. Obviously not an economically wise decision as far as the disease management system is concerned. The question is: is there any wisdom at all in relation to this system? Meanwhile, I don't even have doubts anymore. There ain't no wisdom at all, not even the slightest traces.

13 February 2001:
On our way to the hospital, Rosmarie talked about the healing power of the Healing Circle. She is delighted about all of the comments made so far, as she feels that they don't only help me, but also herself to cope with all the stressors and strains of our current situation.

I may add that the Healing Circle has become an essential part of the treatment process. And as with every good helper, we will never find out which percentage of my recovery will have been caused by the Circle ;-)) Thank God, there are things in life which can't be translated into figures, or as the German philosopher Theodor W. Adorno once stated:

When all actions are mathematically calculated, they also take on a stupid quality.

14 February 2001:
I have been a Big "C" patient for about 2 months by now and I am still learning to live with it. My condition changes constantly, perhaps due to radiotherapy, perhaps due to drugs, perhaps due to psycho-social factors - who knows what's really going on in body, mind and soul?

During the past days I have done remarkably well. Yesterday, I was up for a total of 9 hours or so. I felt pretty good, in terms of attention span and even in terms of swallowing soft food.

Those changes are registered in every detail by body, mind and soul, I assume.

When I write about the disease management system in my critical ways, then I do something which expresses my wish to help improve that system. Critique, according to some old German philosophers, is positive in the sense that the critic expresses her/his concern about the issues and her/his intention to contribute to the improvement of the conditions.

I am aware that in many cultures, critique is seen as something negative, like, if you criticize us you're against us. I have been exposed to this attitude many times in my life, and I know I will be exposed many more times to come. It's difficult to realize that it's the critic who cares, because that's why s/he criticizes. If s/he wouldn't care, the critique would be pretty useless, wouldn't it?

So, what's going on with me other than mainly being a critic of the disease management system? Well, nothing much, I must admit, as my mind lives in some sort of hibernation. I have disconnected myself from the outer world to a large degree, which helps me to concentrate on my body and helps to regenerate the good cells destroyed by radiotherapy.

I keep up the work for International Public HealthWatch as much as I can. I do it because I need a little pet project which is meaningful to me and helps me to keep up a certain level of professional identity during these tough times.

And then? Well, we'll have to wait and see what the future may bring. I am confident I will leave hibernation some time.

Oh, and happy Valentine's Day to those of you who care to celebrate ;-))

15 February 2001:
"The doc" was pleased to hear about the little steps of progress I've made in the past days. Looks like the therapy begins to show results. The cancer seem to shrink incrementally. Let's wait and see how this will develop in the weeks to come, as there are still ups and downs regarding my condition. Last night, for example, swallowing was off again, for no apparent reason. It just was off.

Yesterday, Rosmarie asked me how I see myself these days. Hm, I thought for a little while and then I told her that I don't see myself at all. I have no idea of myself, because I don't reflect upon myself these days. I live on a daily basis, I don't make any projections for myself. I am happy with what "I" "accomplish" when being able to swallow soft food. That's a major event of the day, for example.

I don't think in terms of how I relate to others or others to me. Relations are there for the time being and I enjoy them. I can't think of how they may change because I don't see myself in a position to be able to undergo changes right now. As I've written previously, I see myself in hibernation, disconnected from the world to a large degree, but happily enjoying life from minute to minute. This must be the sort of life kids lead when they're very young.

Here's something, DK sent in the other day, and which keeps me laughing:

16 February 2001:
Case management day again, because next week will be the last full week of radiotherapy, which means that dates with chemotherapy need to be arranged accordingly. It's never easy to convince people that I know what my name and birthdate is, and that I am still the same patient, well, sort of at least, as 5 weeks ago. I succeeded finally. And therefore, I am happy to announce, that next week will be combined radio- and chemotherapy again. The week after, two more radiotherapy dates will be added.

In other words, the first section of the treatment plan will be finalized by 27 February 2001.

18 February 2001:
Well, friends, that was something I hadn't expected from a leader of the Labour Party. Peter Beattie told the rest of the world yesterday that Queensland in particular, and Australia in general represent "the best democracy of the world".

I'm not sure whether there are worst, worse, bad, good, better, and best democracies in principle. I thought, democracy is democracy, full stop. Just like peace is peace. One can't divide it, either it's there or it ain't. Am I wrong? Is there something like a "little bit democracy in tyranny"?

I suspect that something's wrong with "democracy", when parliamentary leaders start talking about "best democracy". What the hell needs to be covered up?

That Indigenous Peoples of Australia are still discriminated against after more than 200 years of occupation?

Yesterday I decided that the time is ripe to get back to cooking again. And today I put this decision into practice. For lunch, I prepared spaghetti carbonara, one of of my favorite dishes. Well, I tried my best and I failed. I hadn't taken care of all details, and cooking is as much about creativity as it is about details, as everybody knows who ever tried to prepare something simple. I need a few more trials to get back into shape.

Late afternoon, the telephone rings, and there's the chemo-doctor. He was concerned as he hadn't heard from me for four weeks. No, he wasn't there when the catheter was flushed every Friday, and no, he never asked for a blood sample, let alone a blood analysis during this time. He must have been frightened when he realized that he hadn't done anything. So, he asked me how I was, and I responded " I'm fine, Paul, and if I had needed you I would have let you know". He didn't get the irony. I comforted him by telling him that we will meet tomorrow morning.

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