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5-14 January 2001: Preparation and waiting

5 January 2001:
The Hickman Catheter (a flexible tube which after being surgically inserted into a large vein can be left in place for a long period of time and used to deliver intravenous medications) was implanted today, which will be used for chemotherapy. Initially, the combined therapies were supposed to begin on Monday, 8 January, but today the experts found out that they hadn't collaborated in synchronizing the different appointments. Well, the decision was made to postpone the begin of the therapy until Monday, 15 January. Now I will have to live with the Catheter for an additional week.

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:
Today, I waited for 50 min. to have a nurse check the wounds of yesterday's surgical operation. It took her 5 min. to clean them and tell me everything's fine. I need to adjust to this wasting of time by carrying books with me and embark on a heavy reading spree ... perhaps I should take some books on inequalities in health with me, to let them know they're under surveillance ;-)

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:
Life is passing through my mind in ever more intensifying quality. I seem to be able to remember past events which have been long forgotten. And I seem to be much more conscious of what I am feeling and doing in the presence. It feels as if I am much more alert that I am a living human being, not a role-player in professional and/or political circles or a functionnaire of information, sometimes knowledge, and rarely wisdom.

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:
The hospital was supposed to call this morning telling me the schedule for the chemotherapy. On Saturday, they told me: "we call you first thing Monday morning". They haven't called, and I dare to say: of course not. Hey, it's summer, sunshine, good weather, so why bother?

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:
Today I started my new job as case-manager - and, hurray, the first success story can be reported. I've got the dates for both therapies together and almost in a way that I wanted them to be. It needed three telephone calls and then things were fixed.

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:
In 1999, the American singer-songwriter Cindy Bullens issued the CD "Somewhere between heaven and earth" (Artemis Records). The album is inspired by the life and death (cancer) of her 11-year old daughter Jessie, which happened in the early 1990s, if I recall it correctly.

One of the songs has the chorus lines:

I'm boxing with God
I'm showing all my stuff
It's probably not enough
But I'm a fighter
Copyright © by Cindy Bullens, 1999
If 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:
Another case-management day with telephone calls between the hospital and the health insurance. The health insurance promised to call back, which, of course, didn't happen. And when I finally was connected with the correct department, the case could be settled, as they noted that everything that should have been in their computer system, was in the system since today, early afternoon. They must have keyed it in after my morning call because then, the screen didn't display what it was supposed to display.

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:
At 10:35 am, I arrived at the hospital, at 10:40 am, the nurse started to flush the catheter because it needs this procedure if it isn't used, at 10:50 am I left the hospital. Now, that's perfect, isn't it?

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:
The initial sensation I had regarding the cancer was that I had difficulties to swallow food. In my case I also suffered from bronchitis and that's sometimes accompanied with problems to swallow food. Well, I had to find out that I didn't have a bronchitis problem. The difficulties of swallowing food did not go away, the stayed with me and got worse. I had to change my ways to eat, and probably more important, what I eat.

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:
In the past days, quite a few people asked me "Are you scared?", and my response has always been "No."

Why don't I feel scared?

There are several factors, which may explain my mental condition:

  • the physical condition is as such that the combined radiation and chemotherapy will provide an option to sterilize the cancer cells and subsequently have the cancer removed. There's not much of an alternative here because the cancer has spread into the lymph nodes. I trust the competence of the physicians, well, I must say, they probably wouldn't have admitted me to their study if they felt that I was a hopeless case;

  • mentally, I look at life with a positive attitude, that is, I will walk this walk, giving all of my energy and strength to make it a successful walk. I will do what I can do, and if that's not enough, so be it, and I will conclude my journey on this planet with no hard feelings. We all have to die some day, it doesn't matter when in the end;

  • my spiritual growth in the past 2-3 years has brought about tremendous changes in my relation to life and death, to heaven and earth, and to myself being a little spot in this great universe. I feel at ease with me being here, I don't regret what I have done so far though I have committed lots of mistakes, which I don't like now, but way back then, I believed I did the right thing. Mistakes are part of life, we can't get rid of them, so it's better to acknowledge them and move on.

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.

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