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22-28 January 2001: Second week: radiotherapy

22 January 2001:
There are two things which are of interest for a Big C patient. One, whether the massive radio- and chemotherapy attack on their body will result in sterilizing cancer cells. Two, and probably equally important, the considerable effects of this attack on physical, mental, social, and spiritual well-being (remember? that's what the World Health Organization defines as "health").

I'm a bit of a romantic person, so I trust that technology will prevail and the cells will be dead in 6 weeks time. I don't know why, but I'm confident.

The disadvantage of romanticism, however, is that the mind wanders around, more or less curiously looking for some interesting thoughts. My mind stopped at the issue of effects of radio- and chemotherapy on health. No wonder, it's probably the most important issue for a person like me at this point in time.

I have read a short leaflet about the effects of radio- and chemotherapy, and I have read here and there on various leaflets, that there are "side-effects". What's a side-effect? In my mind, it's an effect which certainly does not overshadow the primary effects. Or in different language: a side-effect is the slice of lemon in a gin tonic, neither the gin nor the tonic can be side-effects, right?

What the hell has happened with me since last week? They serve me Gin Tonic consisting of lemons and that's it.

I suffer from massive side-effects, while I can't feel the intended effects at all. Interesting, eh? So, if the side-effects become so prevalent for my daily life, why don't they tell me in the first place and prepare me for all kinds of difficulties I may face? Isn't that what one would do if one would care for patients? Telling them stories about side-effects and ways and means to cope with them?

Me romantic again? Alright. I'll leave it here and go watching tennis or soap operas or, in my most perverted hours, cook shows ... gee, there are some creative forces out there who know how to prepare an exciting salad. - Wait, until I can swallow again ...

24 January 2001:
When one leaves home and enters what is called "the real world", one is almost always into some interesting surprises.

The other day I received the bill from the anaesthesist, and I paid it by cheque because it had this strange statement indicating that if I pay until 14 January, I need to pay A$135.00, but if I don't, then I need to pay something like A$374.00. Now that's a pretty surprising difference, isn't it. I was surprised, then, I must admit. Today, it wouldn't surprise me any more.

After I had received the receipt concerning my cheque, I went to Medicare to reclaim the money. And that's what happened today: firstly, Medicare paid me back A$91.65 (out of the 135.00), and secondly, they referred me to my private disease management insurance which would pay the rest.

Thus, I went over to the private guys, they checked the bill and got their computer into high gear to come up with A$30.55. Well, folks, according to good ol' German mathematics 91.65 + 30.55 = 122.20, but not 135.00. So, what about the difference? Who pays the missing 12.80? You've guessed it right, it's me.

Why do I have to pay this sum out of my private account when I have public plus private disease management insurances? Do I need an insurance against these insurances covering what they don't cover? Well, that's not necessarily needed because the difference of A$12.80 is caused by the friendly anaesthesist, who has the right to charge whatever sum he likes to charge. Public and private disease management insurances only cover so-called scheduled fees. I assume these scheduled fees are those one has agreed upon as being adequate, but I may be totally wrong - again. But physicians can charge any sum they like, though the patient only gets reimbursed the scheduled fees.

I have nothing against this procedure, if physicians would advertise their fees so that one can make a decision (if one has the chance to make a decision in the first place), whether one wants to pay the money or one goes looking for someone less expensive. Everybody else has to disclose their fees if they want to get the business: auto repair shops, hair stylists, even sex workers and lawyers, so why not physicians?

You mean, physicians are something different than, let's say, sex workers? Hm, interesting thought, and perhaps you're right. Haven't they got the Hippocratic Oath which binds them to the highest possible standards of ethics when it comes to plunder the patient's bank account?

The fundamental problem, however, seems to be that there is no insurance policy available on the market which would insure me against the financial greed of physicians. If there is one, please let me know instantly.

Well, I have to admit, that I tend to believe the real problem may be that we need a revolution of our social system (wow, what a thought in these days). Perhaps it's a bit premature right now to expect anything happening when we're busy making money with diseases and the sick. But, let's start thinking about it, 'cause revolutions take their time before they happen, don't they?

26 January 2001:
26 January is Australia Day, which is a national holiday of course. This year is also the 100th anniversary of the Commonwealth of Australia. In addition, we have election campaigns in some states including Queensland. In other words, the country goes ballistic about its accomplishments.

I bet, if the Germans would celebrate on a similar level of nationalism, the UN Security Council would call for an emergency meeting and discuss possible steps to bring the Germans back to reason and rationality.

Yesterday, I had a brief meeting with the radiologist who wanted to know how I was after 2 weeks of radiation. I told him my condition, and then he recommended to add additional nutrients to my diet, undertake mouthwashs every 4 hours, and use a liquid if I had difficulties to swallow. I'm not sure why the mouthwashs as I did not complain about any problems regarding oral health.

I had told him that I used Aloe Vera Juice to sooth the food pipe, but obviously he didn't like it, because he prescribed something else which he praised in the best possible way. Rosmarie bought the stuff in the pharmacy and I took it. The result? It tastes better than Aloe Vera Juice and the effects are the same. Thus, I decided not to continue with the chemical weapon, when Aloe Vera produces the same results. I will have to discuss this with him.

This applies also regarding the additional nutrients. Rosmarie bought the ones recommended, i.e. "Sustagen". The nice pharmacist indicated to her a much better product, but we thought, well let's check out this one and afterwards we buy the other. What's the main difference between "Sustagen" and the alternative? "Sustagen" contains lots of sugar and other stuff which I don't like very much, while the alternative is based on natural products including herbs etc.

27 January 2001:
The major difficulty I am confronted with is swallowing food. It seems that I'm getting increasingly sensitized regarding non-liquid food. Liquid food, i.e. water or milk or clear soup (consommé) is ok. As soon as other ingredients are added, things may become difficult already.

Yesterday, Rosmarie tried to add rice to the consommé, which didn't work. Then we decided to have noodles mashed in the food processor, but the result was that they weren't really mashed. There were still tiny little pieces of noodles which were more difficult to swallow than if we had left them as they were. Guess, we'll go back to mashed potatoes, because once potatoes are mashed, they're mashed. It's different with carrots, for example, one can mash them, but there are still little pieces of carrots floating around. Trust me, I know what I'm talking about, even though it sounds pretty weird.

Today, we tried Chinese noodles, and they're great because when they're cooked a bit longer, they become really soft and they are perfect for my condition. Now, we can add them to consommé or even use them in connection with some asparagus, which still is my preferred vegetable.

28 January 2001:
Swallowing food will be difficult for a longer period of time. That's why I called this cancer a perfect weight-loss program.

Another problem, which begins to arise slowly, is to sleep at proper times. I am sleeping a lot and during the past few nights I had difficulties to fall asleep, partly because I had to cough too much, but also partly because I couldn't sleep anymore. The coughing results from the cancer in the esophagus which seems to produce larger amounts of phlegm. It's as if a cork would block the passage through to the stomach. Water gets through easily, but everything else causes more or less discomfort, solid food is impossible to be swallowed.

Concerning the sleep, it's not that I want to sleep all through the day, it just happens so, particularly on therapy days, when I instantly return to bed once we've returned home. Then I sleep at least for another 3 hours, after which I change into the dozing off period: falling asleep, waking up, falling asleep etc. I never get my body to a stage where it asks for action, for example. The only messages I receive deal with: let me sleep, leave me alone, I'm exhausted, etc. It's kind of a strange condition when I feel my body rejecting ideas of my mind concerning to move around, wake up, get up, do something, etc. I would love to do more but it doesn't seem to work out that way.

Thanks a lot again to all of you contributing to the Healing Circle. Rosmarie says thanks to all of you sending greetings through the Healing Circle.

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