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Towards the End Zone: Palliative Care.


15 August 2001:

Well, the last 2 months were horrific to say the least.

I am now in terminal patient care at home, of course, which provides much better service and care than the clinics I dealt with. I feel better with the people from the Brisbane Palliative Care Team, who seem to be competent, compassionate, and caring - three qualities of professional performance which I have missed for months.

Basically, a few things went wrong with the "experts" who obviously had some difficulties to read their own hand-writing on the wall. Ironically, two weeks ago or so, when I moved into Palliative Care, I was offered another round of chemotherapy. I was wondering whether I would receive this cocktail this time for free, like "this one's on the house". I kindly rejected the invitation. And that's it, I assume. I will never hear from them again. Neither the radiologist, the oncologist, nor the gastroenterologist seem to be interested what has happened to me, and what their specific contribution to these events may have been.

I am pretty sure that they have never read and will never read the book:

Strauss, A., Fagerhaugh, S., Suczek, B. & Wiener, C. (1985), Social organization of medical work. Chicago (University of Chicago Press)

The authors present research focussing on the effects of chronic illnesses on the social organization of medical work therebey discussing such key issues like machine work, comfort work, sentimental work, and the work of patients in the course of dealing with chronic illnesses. Their observations do not offer a bright light on our concepts and practices of physicians-nurses-administrators-patients-relations in the complex organization of the hospital and beyond. On the contrary, there seem to be more conflicts than can be handled and in the end, many patients do not seem to have available the social power resources to make their case against the almost allmighty medical fraternity and its organizational appendices, which it brings into position whenever defense of the fraternity seems to be seen as needed. And if it's only to accomplish an increase in fees.

This book may help them to reflect upon and perhaps to comprehend the organization and above all the practice of their daily work.

I don't know what will happen with me in the near future but I am prepared to walk the walk enjoying the tremendous support from my wife, family and friends. I am peaceful, but I am also still full of humor and in this house there's always a laughter to be heard. I wonder what the neighbors are thinking.

Have a laugh on me, and learn to laugh also a little bit about yourself when you look into the mirror once a day. It helps - promised.



17 August 2001:

So, I'm sitting on the balcony, enjoy the sun, talk with one visitor per day and have the clearest mind I have ever had in my life. I get pampered with food and drink, I take naps whenever needed, and when I want to get up and go downstairs, listening to music or chatting with Rosmarie and her cousin Regina, who flew in from Germany on short notice. I just do it. What's wrong with these conditions? - Nothing much, eh? I agree. Well, physically, I feel very weak, and it seems that I don't get stronger, but that doesn't worry me much these days. I'm in no competitive mood at all.

How have things changed? Well, the Palliative Care Team reduced the calcium level in my body to normal and together with inflammation and pain management this contributes to a painless 24-hour life plus a very clear mind. Of course, this is no cure, this is just the addition of quality of life to a few weeks before the body does not reduce the calcium anymore and the rest of life will take its course.



18 August 2001:

Are there any "important" things I need to write and say before I will leave? No. I have lived and through my life I have said and done what I was able to say and do; some can be read in printed mode, some is available for reading on this web-domain.

And some is perhaps stored in your memory or yours, yours and yours, and therefore it doesn't need to be repeated again, does it? You just share what you recall and reminisce over a glass of good vine and always remember to include a lot of laughs because it's humor which keeps souls together in good and in bad times.



26 August 2001:

During the past 2 weeks I was able to read quite a bit, and here's a poem I came across written by Jim Northrup from the Anishinaabeg Nation in North America.

End of the Beginning

Someone said we begin to die
the minute we're born
Death is a part of life
Who knows why the Creator
thins his herd
Another old saying says
We must all be prepared
to give up those we love
or die first
Take time to mourn
take time to remember
Everything happens in cycles
The pain you feel was once
balanced by someone's joy
when that baby was born
The loss you feel today
will be replaced by good
long lasting memories
Is there a message here? Yah.
Treat others like this is your
last day above ground.

© Jim Northrup 1997,
taken from his book "The Rez Road Follies. Canoes, Casinoes, Computers, and Birch Bark Baskets." Minneapolis (University of Minnesota Press), p.35-36

During the past 10 days or so I have experienced days of peace, beauty, and balance, which I have never ever experienced before in my life in such intensity. I have enjoyed them minute by minute, hour by hour. I have lived with the flow of time and my life has become "easy". Sometimes, I wonder why it has taken so long to reach these beautiful moments of peace and love. With the manifold loving care offered by Rosmarie and others I am able to spend these days in great harmony, for which I am so very grateful.

As I wrote above, I am reading. Everything I read deals with Indigenous people, either here in Australia or in North America. Amazing stuff, and so close to my heart and soul in these times.



6 September 2001:

While my mind is still working pretty well, my body is deteriorating rather quickly. From yesterday to today I have lost the capability to walk. Tomorrow, we will find out whether I am strong enough to move from the bed to a wheel-chair which would allow me to move around on the upper floor of the house and on the balcony. I still love to sit in the open air and enjoy the sun and wind.

But in these final times it seems to be pretty hard to make any predictions. The physical deterioration happens quickly, and who knows what's going in in 5 hours, let alone 24 hours?

In any case, no predictions also means that I have no idea whether I will be able to add more to the "Big C Report". This might be the last entry, friends.

I send love and peace to all of you.



7 September 2001:

I was able to finish a paper on public health, which I did not want to write initially. I thought I should leave without further comments. Then Rosmarie asked me whether I had anything to say about public health. Of course, I responded, but I felt too weak to put it all together. Two weeks ago or so, we sat on the balcony and I dictated her a rough outline. I wasn't sure whether I would work on it, but then I felt like continuing the writing. The result is the paper, which can be accessed via http://www.ldb.org/dying_man.htm in case you're interested to read it.



8 September 2001:

The larger muscles of my legs are not performing any longer as indicated previously. This means I cannot move around the house and the upper floor anymore, I was not even able to get into the wheel-chair. Now we are opening the balcony door, move the bed to it, put a table in front of me and there I am: sitting like an "Emperor" on cushions, get served like an "Emperor", perhaps even look like one, write on the computer, enjoy the sun and wind, and everything is just alright. We "solved" the problem of providing me with the best conditions possible to spend my days.

This house is still as house of jokes and laughters. The "Emperor" label has been put on me by Rosmarie and Regina, of course. Would I dare to call myself an "Emperor"? No way ...

In another development, we have restricted the time I spend with visitors. I feel uncomfortable after 30-45 min with visitors, may they be as lovely as they are. I have lost my flexibility regarding changes of my daily routine. Isn't that strange that my mind needs this regularity, a type of regularity which I always thought was something I would hardly need? Now I have become like a "little philistine", who needs to follow parochial rules to be able to enjoy the day. Oh dear, what a change, which makes me smile about myself again as so often in the past weeks.



11 September 2001:

I feel an incremental decrease of using the arm muscles, which clearly indicates that my physical deterioration is progressing.

It looks like I will not be able to continue with the current arrangements for a longer period of time. If I cannot keep my body in an up-right position, then writing will become impossible. My feeling is that I will not have much time any longer. But as you know, I am well prepared and I don't worry at all.



12 September 2001:

I've watched the TV coverage of the attack on the World Trade Center and the Pentagon. To my mind, these were militarily planned and executed attacks and they must have involved a number of experts helping to plan and train the people who carried them out. I don't believe this could have been done by a small terrorist group from whatever country or territory. They may have given support, but they were almost certainly not involved in the planning.

I don't want to go into further details. As you can imagine I still believe Gregory Bateson is right, when he wrote "The context defines the pattern." In order to understand the pattern of this attack, the context needs to be analyzed. I have my doubts that this will happen, and therefore we will probably never know why the attacks happened with such military precision planned by whom.



15 September 2001:

The physical deterioration continues and it's getting increasing difficult to even move in the bed. One can say that I have become bed-ridden now.

I have to call Rosmarie for every move that I need to do. There is no night any longer that she is able to sleep through. Under these conditions it will be only a matter of time when I won't be able to set up in bed etc. On the contrary, I feel that I will continue to sleep most of the day and finally cross-over within the next week or two.

I'm painless and peaceful - Eberhard.



17 September 2001:

This is the final entry. I can't write anymore.

Farewell, all you beautiful people, Rosmarie, Regina, Pam, Norma, Kenny, Otter, Kas, Ron, Annette, DK, David, and all the others I have forgot, because my memory isn't working as well as before.


If you wish to comment on the issues presented here, please use the "Healing Circle" guestbook, which is accessible via the following links:

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Please accept that I won't be able to respond to comments individually. Thanks for your kind support - Eberhard.





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