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26 February - 4 March 2001
Seventh week: radiotherapy


26 February 2001:
Well, today the Hickman Catheter was removed. Tomorrow is the last radiotherapy session.

This doesn't mean that from Wednesday onwards I will be able to do what I want. On the contrary, the effects of radio- and chemotherapy will be felt for weeks. I had another chat with the chemo-doc this morning and he assured me again that I will probably feel quite a bit of fatigue over the next few weeks. In any case, I shouldn't be surprised if it happens.

Where do we go from here? I will have 4 appointments with doctors within the next 4 weeks.

My General Pracitioner (GP) needs to see me a week after the last radiotherapy session, if only to check whether I'm still alive. It looks as if he is in charge of my health after radio- and chemotherapy, which constitutes an interesting case, doesn't it. The specialists do all the magic things and get paid for it magically, and the GP has to shoulder the responsibility that I am well and produce the correct data, whatever the correct data may be.

On 12 March, I have an appointment with the Gastroenterologist, who will have the reports from the radio- and chemo-docs on his desk and we will probably have a discussion if and when surgery will take place.

On 22 March, I will see the radio- and chemo-doc and I will have a Computer-Tomography again to check the progress made so far. I'm not sure why I see the Gastroenterologist before this appointment because in my logic he would need the information only gathered 10 days after I saw him.

Did I write "logic"? Well, apologies, logic doesn't apply to Disease Management and Administration Systems.

Anyway, my feeling is that decisions about further steps won't be taken until 22 March, which pushes the whole timeframe of the treatment plan into May/June.

27 February 2001:
What a brilliant sunny day to finish radiotherapy and to look forward to days without hospital visits. I am relieved, folks.

28 February 2001:
These days provided time for some reflection. Here's something which keeps me busy.

We replaced the "care" in "public health care" with "management" and/or "administration. Thereby, we replaced "solidarity" with "control".

When we replace the word "solidarity" in public health (and elsewhere), we also lose the practice of "solidarity". If we don't practice solidarity, we don't care. And if we don't care, we are not living in communities. And if we don't live in communities, we practice "Social Darwinism".

We need to revive solidarity, which we have buried for the sake of competition and cash.

We need a new "Solidarity Movement".

In the 1980s in Poland, that movement created solidarity within communities to protect the individual against the overpowering control of the government and its agencies.

Today, we need to create communities of solidarity to protect the individual against the overpowering control of the government and its agencies, and against the control of private, globalized enterprises.

1 March 2001:
While I am spending more time walking house and garden and checking e-mails and web-sites, I also fall asleep more easily and have no difficulties to sleep 12 hours a day.

Last week, I experienced fatigue. This time it feels like being tired after having exercised. It's this good feeling of being tired after having accomplished something. Like "positive fatigue"?

2 March 2001:
I had to get the "Magic Mouthwash" refilled, this liquid which coates the esophagus so effectively that swallowing becomes less of a mess. In order to do this, I needed to drive to the pharmacy of the hospital as they have all the ingredients available to mix the stuff. So, I drove to the hospital (yep, I was driving the car), handed the bottle to the lady behind the counter, and was asked to wait 45 min.

Well I had the new book I'm reading (more about it later), so I didn't worry and enjoyed my time. After 45 min. the mix was ready and the man who'd done it asked me whether I had chemotherapy today which I denied. "What a pity", he responded, "because then we could have charged your private insurance to cover the costs. Now you've got to pay yourself."

Wait a minute, I thought, this is something which has been prescribed to me because it helps easing the pain, and just because I don't have a chemotherapy that day I have to pay for the medicine myself?

He said, there's no way we can change that because your chemotherapy days are registered and we cannot change them here.

Can anyone explain to me why a drug is paid for if it is purchased on the day of treatment, while it is not paid for the day after? Is there a tiny little grain of reason behind this policy which I have overlooked?

3 March 2001:
Another lazy day of sleeping, eating, watching TV ("57 channels and nothing on" - Bruce Springsteen), and enjoying to be alive. It's great, folks, to be here. I get the feeling that I want to generate some ideas about me and my life in the months and years to come. It's a bit premature still, but life seems to become an interesting playground again for me to participate in its various activities. Yesterday's car drive clearly showed me that I want to go out again.

It also showed me that going out makes me feel tired after two or three hours.




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