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15-21 January 2001: First week radiation and chemotherapy

15 January 2001:
My appointment was scheduled for 8:00 am. I met the physician at 9:05 am. He talked a bit, and then repeated the examination from 3 weeks ago. Then he accompanied me to the treatment area and the nurse took over. They repeated the examination of the physician, which happened 30 min. before. Then I had to wait another 50 min. until the pump for the chemotherapy was available. On 10:40 am, I left chemotherapy and was treated all in all roughly 30 min.

I had anticipated that there wouldn't be much of waiting time early in the morning. I was taught a different lesson: more than 2 hours waiting ... it's ridiculous and there's nothing and nobody in the world who will be able to convince me that this type of management and performance makes sense.

Now I'm connected to a little pump (probably 18 x 10 x 3 cm) running on batteries, which I have to "wear" until Friday morning, when I will get disconnected again. It's a bit of a discomfort to have this machine around, but the alternative is to stay in hospital, which I consider even worse. The stuff, which runs through my veins is called "fluorouracil" (5FU). - I feel a bit dizzy and sleepy, but I assume that's one of the side-effects of going "cold turkey" with smoking cessation.

I received a few brochures from the Queensland Cancer Fund, which are rather general in scope and content. Tomorrow, I have a meeting with a nurse from radiation, which was supposed to be happening today, but she was not available. She may be able to answer some of the questions I have.

16/17 January 2001:
Yesterday, I had to spend 8 hours in hospital because "cisplatin" (CDDP) was added to my chemotherapy. And this stuff is obviously pretty toxic, which is why kidneys needed to be protected. Anyway, in between 10 min. radiotherapy, and at 5:00 pm Rosmarie picked me up and drove me home, where I went to bed straight away. I felt exhausted, though I had dozed off pretty often in the hospital.

Today, just 10 min. radiotherapy and back home and still feeling sleepy. In the meantime, I feel the side-effects of radiation: swallowing food and even liquid food becomes increasingly difficult because of soreness in the esophagus. I don't feel any side-effects related to chemotherapy, no nausea, no vomiting.

No wonder, this body is used to all kinds of toxics and while it gets detoxed on the one side, it gets pumped up with new stuff on the other side. This body has been a chemical waste disposal area for decades. The body seems to like it, well at least there's much less resistance against chemotherapy than expected. Actually, there's no resistance at all.

But radiation is a different matter. Hey, I haven't lived close to nuclear power plants, nor was I in Chernobyl when it exploded. So, my body doesn't seem to like radiation as much as chemicals.

Rosmarie bought some herbal stuff today to sooth the side-effects of radiation, and the best product seems to be "Aloe Vera Juice", which really cools down the esophagus, at least for some time.

Anyway, I expect that it will take me a few more days to regain a bit more focus. The radiation "shock" surprised me, but I believe we will be able to cope with it more actively, and, consequently, more successfully in the days to come.

18/19 January 2001:
Looks like I'm very tired. Yesterday, after radiotherapy, we returned home and off I went to bed sleeping and dozing for the next 24 hours.

Today, the chemotherapy was finished, I was disconnected from the pump, had the regular blood analysis, and then a talk with the doc, who expressed his satisfaction with the data he saw on his computer screen. Well, I have become a set of data, which is an interesting feeling as I can hardly relate to it. When I asked the doc "how's the blood analysis", he told me the data. I had to intervene and ask for a translation for human brains, which I got, but a very short one, y'know. If I had the energy, I would start reading books on blood analysis, but that's really not my business.

I asked the doc regarding my fatigue and he felt that the combination of radio- and chemotherapy may result in those effects. See, "may" is one of the preferred terms here. The nurse who treated me today had mentioned briefly that this particular chemotherapy has the side-effect of fatigue, though the producers do not mention it in their information sheet. Now, that was much more on the spot. Perhaps the doc should have a talk with the nurse?

Well, I don't care much, as I must say that I enjoy sleeping, and obviously sleeping seems to be good to help the body rebuilding good cells which have been killed in the past 4 days. That's what I was told. Sounds reasonable to me, but who knows ...

Oh, and here's the 2-minutes patient education about the Australian private hospital system given by "my" nurse of the day. When she asked me whether I had the next appointments for chemotherapy, I said "no", and added, that this would be a matter of coordination between the radio and chemo guys. "No no", she responded. Coordination is the responsibility of the patient. Radio and Chemo are two totally separate units and have nothing to do with each other. If you want to travel anywhere, then you need to book rail and airline tickets. You have to arrange for that for yourself, too, don't you? Well, that's a brilliant argument and I instantly gave in. Now I know:

In Australia you pay and pay and pay ... and you don't receive any support or service which makes your life as a patient a bit easier.

Finally, it may happen more often than not that I won't add records on a daily basis. When it comes to sleeping, I am the last who would reject the invitation.

20 January 2001:
I have thought about it last night and I have decided, I will not use the term "health care system" any longer. I will replace it with "disease management system", which is probably still a too friendly term, because I have my doubts regarding the term "system" and also regarding the quality of "management". I'm not sure whether we are as systematic as the term "system" would suggest, and I'm also not sure that we are as strategic as the term "management" would require.

Disease management system does not suggest that "care" is a function of this system as much as it makes clear that such an expectation can already be seen as being disfunctional for the whole system. Care requires human compassion, which usually is not required by nor wanted from managerial systems. They prefer to pretend they are rational in scope, purpose, and performance. Of course, this is quite an amusing claim given human beings' fundamental strength regarding irrationality.

21 January 2001:
Saturday and Sunday are considered to be days of recovery from the effects of radiotherapy. Well, as far as I can see, that's not quite true.

I still need a lot of sleep, but what's more discomforting is the fact that it has become increasingly difficult to swallow food at all. Sometimes, even liquid food is difficult to swallow. In other words: my weight-loss program is in full swing.

The weather in my little town is brilliant these days and it's great to have the birds in the garden - noisy as ever, but still great. They give me an idea of what's going on outside this house: vocal fights, sometimes becoming physical, but then silence, too, when agreement has been found who eats what on which tree.

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