also remembered the «test for abdominal lymph glands« and how, brought back to her bed, she was put into it with her head at the foot end so that she could read the chart. That was how she found that she had a malignant tumor and that she had a heart standstill during the procedure. This frightened her, she thought she was going to die. Then she was told that she was due for surgery, her spleen had to be removed. The day before surgery she was still knitting a plaid for her sister and was reprimanded for being up late in the evening, when she should sleep before surgery. She remembers saying that she has to finish the plaid, what if she dies during surgery? The next day she was full of rash, was transferred to the infectious diseases department, the cause for this rash has never been determined and to this day she does not know why she was not operated upon. After treatment she was OK, took a job as a physical worker, has two children and lives with their father.
Lina is followed regularly, has quite a few health problems, related to her previous treatment. Her psychologist at the time found no evidence of psychological injury, which is a frequent consequence of the kind of treatment Lina had received. Maybe what helped was the fact that she could get rid of unpleasant memories by talking about them during her reconvalescence and later, that she early found a partner in life and formed a family. She is now 38, has different pains and aches and worries about them at times, but is on the whole satisfied with her life and her family in spite of her modest circumstances. She has found many friends among the former patients and takes part, with her family, in our concerts and collective vacations. To many, she has become a valuable friend.
I asked myself: «Why am I here in this world at all? «
It has been noted in several studies that deliberation on the sense and meaning of the illness may be of vital importance to the patient. Those who survived cancer sometimes find a sense or purpose of the affliction as being given another chance in their lives.
Ljubo was treated for a brain tumor in 1984, when he was 9. Surgeons removed his tumor, then we gave him radiation treatment from head to rump for 8 weeks. He was the first child I have treated with radiation for a brain tumor after my return home from a 20years vagabonding abroad. During my last years in New York I had been intensely involved in finding the best way to treat this kind of tumor. Ljubo didn´t know that, but he knew that it was best for him to submit to the long drawn-out irradiation which was necessary after surgery. Every day except Saturday and Sunday he came, and lay down prone into a plaster cast in order to remain totally immobile during the irradiation. He could not see anything around him, he was all alone in the unfriendly room with the »Monster«, the cobalt »bomb«. We had few problems, things were going better day by day, at times I even caught him smiling, as I remember. In his memory, the irradiation figures mainly as a painless procedure, with friendly people and a lollypop now and then. We have not met for several years after that. I have met him as an adult, at the Institute, and we are in regular contact since;I often meet him at the Foundation The Little Knights, but also on the street, and we always have something to talk about. His psychologist has determined Ljubo´s intelligence quotients as well above average. He also found that he has some emotional problems which deny him the use of his intellectual capacities. Ljubo dragged his feet quite a while at the university, but graduated at last this year. We had another talk recently and he told me a few things worth thinking about. Ljubo dedicated a lot of his time to question the sense and meaning of life. «I asked myself, why am I here at all, in this world. One has so little influence on the course of his life. On the other hand, there is a choice: you can be embittered, or you can think that things might get a lot worse. What you had to go through can make you tougher and stronger as well and perhaps this is why we cope easier with life´s problems than those who have not gone through what we have.«
He has searched for the meaning in life in religion and has been looking for a way to translate religion into practical, everyday life. «Religion has become my life-style, what I do day by day. When sick, I was powerless, now I have some strength. I may loose this strenght, of course. What is it that cannot be taken away from me? My knowledge?This can be taken away. But nobody can take away my relation to God. This is unique. To analize this and to start thinking this way, I needed a grievious experience. Now I can solve my problems with the help of my Bible, which I study daily. I try to gather strength from it, to be humble, for example. Not humble in the usual sense, but the way the Jewish king David was. Ljubo converted his thoughts into reality: he graduated from the university and these his thoughts became his diploma thesis.
On lonely evenings,
With the howling wind singing its song,
I long to tear out of myself
The burden of the day (Mia)
The mental and emotional consequences of childhood cancer and its treatment certainly do not depend only on what is happening to the child, but to a large extent on the child himself, his ability to react, his parents, childhood enviroment, the health unit personnel. This is all intertwined. Researchers, evaluating the quality of life after childhood cancer treatment, do not have an easy task when trying to formulate a system for assessment. Do we know, at all, what is »happiness«? We are aware of the everlasting question: is every rich man happier than every poor man? What do the riches of health mean to one and the fact of having survived a lethal disease to someone else? I am well aware that I shall not be able to answer these questions with any numbers or certainty, I shall have to do that through the words of former patients. Of course, the choice and the evaluation here is subjective and so will be your judgement after reading them.
Our psychological testing showed that survivors of childhood cancer are different in some aspects from their peers, who have not had the same experience. By now one out of one thousand young Slovenes has survived a cancer. We shall have an increasing and a sizable group of people, worth our attention and care. Some survivors need medical help, some psychological or social assistance, some both or all three. We can learn from them how to better fight cancer as well as how cope with problems in later life, also fear and inferiority feelings.
Years ago, when confronted with these youngsters and talking to them, my first impressions were these: I admired them and I felt deep respect. At times I was moved to say: «They carry wounds, but also pearls in their hearts«.
We have learned a lot since those first beginnings. Through medical examinations we found, that at least half of them are in need of some kind of medical help and that they have to be followed for the rest of their lives. This, however, does not concern us here. We are here mainly interested in how the consequences of childhood cancer treatment make life more difficult for them, how they influence their private and social spheres. What was the impact of this experience on their developing personaliy? How their personal characteristics shaped these influences is probably to difficult a question. What we do know is, that as a group, they are different from the »normal« population of Slovenia-but also, that there are considerable differences among them, according to disease, mode of treatment, gender, age, milieu and other factors we don´t know. The society in which they live and where they try to thrive also has a strong influence on the quality of their life. Therefore, I am trying to call attention to this group of people. They will ever more contribute to and shape our Society, which, however, does not yet realize the importance of this phenomenon – a Society, which would rather ignore cancer with all its problems or at least shove it into a corner.
My message to this Society would therefore be this:
- that cancer is curable (in children up to 80%)
- that cancer cured, may leave, physical, mental and emotional scarrs
- that there are also positive consequences: maturing, life values and increased tolerance of others.
Perhaps it is worth mentioning the fact that among all the survivors of childhood cancer in Slovenia, we find, among causes of later deaths, only one suicide. These survivors now number over 700. In
contrast, there were, just in the year 2000, registered 147 suicides at the ages 15-39 years.
WERE YOU HOMESICK WHEN IN THE HOSPITAL?
»NO, SINCE MY MOTHER WAS WITH ME ALL THE TIME«.
(Mitja, treated for leukemia 1969).
Zvonko was diagnosed with leukemia in 1976, when he was 10. Two years of chemotherapy followed, and irradiation of his head. In 1986, at the age of 20, he accepted our invitation to follow-up. There he told us, that he had been more afraid of the city itself than of the treatment: it was his first time in Ljubljana (a city of 300. 000). He was told that his blood was deficient and that treatment would take care of that. He never doubted that he was told the whole truth. Yet he felt rather deprived, being taken care of by his grandmother – his parents were working in Germany at the time. «When they realized that this was serious, they returned home after all«. At times he was angry with his parents, who left him in the care of his grandmother while his twin sisters, born in Germany, were living with them.
He had no problems in school at first, but after moving into a town from his village, his marks dropped to his dismay. Yet, he graduated from high school without