5-14 January 2001: Preparation and waiting
5 January 2001:
I was also informed that the therapy will last for 7 weeks. In other words, results on success or failure won't be available until early March.
I wonder how I will cope with the long duration as it is quite clear that my physical health will be affected massively. It will take a lot of energy to keep my spirits up. Well, I may be sleeping a lot, one of my favorite and rather successful approaches to deal with illness. And I will certainly stay in touch with friends and colleagues as long as I will be able to do so.
6 January 2001:
That's the health care system, in this case, even the private hospital can't operate with a reasonable degree of efficiency. Well, with the exception of sending bills, of course ;-)
I'll go on a ride ... and sometimes I won't like it, but it's still a ride and it will take me to some new places ... I look forward to go through this all and I look forward to how I will feel afterwards, y'know. It's kind of an exciting trip, though one could have lived without it, of course.
I do look on the bright side, because any other side won't do much to keep my spirits up high where they have been for the past weeks and where I want them to stay for the months to come.
I'm pretty sure, I won't lose my humor, though it may become a bit more sarcastic, but that's only due to experience and old age, isn't it?
7 January 2001:
What is it that the threat of life may produce a higher level of awareness of being oneself? And why is this connected with a lower level of taking oneself important? How come that all we are striving for professionally becomes almost meaningless when experiencing cancer? In other words: why do we seem to strive for something which turns out to be shallow, when life is at question?
What the hell are we doing with our lives, when we're busy making plans for our careers?
8 January 2001:
I'm asking myself what's their definition of customer relations, let alone patient support or other nice ideas regarding the support of Big C patients. Do they expect me to arrange the schedule myself? Are they telling me to set up my own hospital? What's the responsibility of hospitals in this country? Do they have a duty of care law?
It seems to me that the health care system is in deep trouble, because it lacks the basic foundations for "health", "care", and "system". To me, it becomes more of a "patient neglect chaos" than a "health care system".
They will tell me that they wanted to call me, but there were so many other things to do ... like "would you please take care of your illness, we're understaffed".
Again, how do people cope with such performance who do not enjoy the generous support I enjoy? This performance is so damned inhuman as can be. It's a scandal. - Does anybody care? I don't think so. Because, when you're sick, you're out, too. Sick people don't have a lobby, which is why they can be treated like a piece of shit in times when power, money, greed and ignorance prevail.
We're losing our capacity for solidarity, for empathy, and for humanitarian action - and this we call welfare reform.
We are losing and call it progress.
9 January 2001:
The funny thing today was, of course, that the radios called and told me that the scheduled days were off again because they realized two things: (a) I need to be exposed to high energy radiation, while they had booked me for medium energy, and (b) radiation should follow chemotherapy and not the other way around.
Well, whatever the logic of this sequence may be, I will dig deep to find out. And I have my doubts whether I will ever come up with a good quality explanation. More important is, that it will work, whatever logic may apply.
10 January 2001:
One of the songs has the chorus lines:
I'm boxing with GodIf you ever wish to dig deeper into some of the emotions which a cancer patient may experience, this CD is highly recommended. It's beautiful in every sense of the word. The lyrics are clear and oh so honest that's it's hard to believe Cindy Bullens could come up with them and find music to match them.
11 January 2001:
I'm asking myself why the patient has to clarify these administrative issues, which should be the responsibility of the hospital and the health insurance. They should be able to communicate directly. The farce goes so far that the health insurance did not provide the Patient Support of the hospital with their fax number. Only I would receive it, and I am entitled to give it to Patient Support, if I want to. That's simply maddening.
In the past few days I have received dozens of encouraging e-mails, which help a lot to cope with my condition. I am truly amazed about these mails and the comments in the "Healing Circle". They constitute magnificant support and I feel very grateful for every piece of feedback, which arrives in this section of cyberspace. Thanks a million, dear friends!!
12 January 2001:
During this cleaning process, another nurse came and wanted to talk with me about postgraduate public health studies. He wanted my advice, what to do, where to study, etc. He's a clinical nurse, but he's also interested in health systems planning and management. Hey-ho, isn't this the speciality of our School of Public Health? And since he added that international health would be an area he's particularly interested in, I gave a brief presentation on the advantages of studying with us ... all the way through this presentation I lost the point where the disadvantages were; gee, I suffer from memory loss before the therapy has started. Anyway, Boss, though I'm sick, I'm working relentlessly to add money to the School's budget.
In Manila (Philippines) there was a huge banner accross the main circulatory highway around the city, which said: "Punctuality is the respect for the time of the other." I chuckled all the time when I saw it because in Manila punctuality is impossible to keep due to all kinds of barriers. But here in my little town, the saying is applicable, though it seems that we're miles away from following the advice - with a few exceptions like today, which hit me unprepared and made me feel like, "Holy Moses, they're keeping their promises ..." :-))
13 January 2001:
Probably the most important aspect is that I need to eat small meals several times a day rather than feed on 3 big meals. That's a bit of a problem because my habit tells me to eat a big one three times a day, while my mind tells me, pick a little bit, and after a while, pick up a little bit there ... y'know, I've gotta care for myself, and not just waiting until I get hungry. When I get hungry, i.e. when I missed the snack, I start eating too fast, don't chew enough, and then the esophagus tells "no way, babe, that I let that stuff through". The result: I spit out the food and I don't get the stuff my body needs.
Another change refers to the quality of food. I have become extremely sensitive regarding acidic fruits and vegetables. I have also become sensitive regarding certain spices. Well, I prefer bland stuff these days, like a piece of iceberg salad filled with cottage cheese, or raw salmon, or broccoli and asparagus, or mango. I don't like anything with lemon (juice), no vinegar and no vine, I can't eat meat anymore, which is not a bad thing in the first place, but I also don't like to eat sausages (the German habit!). I like some cheese, and I eat live yoghurt, which helps with digestion and I don't know what. I also add vitamins to my "diet".
And finally, there is a different sense of taste developing. It seems that I become able (again?) to taste food as it is supposed to taste. And I enjoy it. The raw iceberg salad tastes great, as does the Italian ricotta cheese (white cheese) or as does bland broccoli. All of these have their own very rich taste which we seem to cover up with spices. I learn to appreciate their "natural" taste.
All predictions regarding the effects of the therapy indicate that my taste buds will suffer first. Well, I'm not sure and I will keep you updated whether that'll be the case with me.
14 January 2001:
Why don't I feel scared?
There are several factors, which may explain my mental condition:
So, here I am at the end of my preparation for treatment. Tomorrow, the real thing will begin. I look forward to it, because it's time now that something's going to happen. I will enter this new phase of my life with the attitude described by Cindy Bullens in the quote above. And I am able to enter this phase with your tremendous support, which will help to pull through. Thank you so much, friends.
P.S.: In the past days I have listened to some outstanding music, which helps keeping my spirit up. I love to listen to Randy Newman, particularly his CDs "Sail away" (1972) and "Good old boys" (1973), to Tom Waits, Lowell George, my squamous cell carcinoma fellow John Prine, and of course David Knopfler, particularly "The giver" (1993), and "small mercies" (1994). Not to forget Brian Wilson, whose work has always been a pleasure to me. These guys offer some of the most honest music, when it comes to focus my mind and to keep my life on track.
Copyright © by Eberhard Wenzel, 2000-2001