The Little Knights

60 of these former patients, three times more often in males, has not been a frequent topic at our meetings. But in the same group, where Lina spoke about her appearance which caused her so much uneasiness, a boy who had been found to be infertile, tried to console her like this: «You will have children and look at them, even if only with one eye. I, on the other hand, shall never see any children of mine«. A young woman, survivor of ovarian cancer in childhood, was reconciled with her fate. Mildly embittered, she says that at first the idea she never could have kids of her own was very difficult. It is better now, her husband has a son from his previous marriage and, after some intial problems, they are a relatively happy and understanding family. Her stepson is quite attached to her, calls her »mami« and turns to her more often than to his father.

  We talked a lot about social problems, environment, school, jobs. Those, treated during their schooling, had been mostly bothered by the loss of their hair. How did their schoolmates look on them? The experience varied a great deal.

  Betka, now aged 22, found it most difficult to »re-enter her life, having been stricken with cancer when just entering life«. At the completion of her treatment she was between grammar and high school, she didn´t want the company of children, who were often impudent, even cruel towards her. The loss of hair shattered her, who was so preoccupied with her looks at the time. She avoided being looked at. Her life was totally changed after her leg had been amputated. «I can´t wear minis or shorts, am always in slacks, hiding my leg around the pool, cannot indulge in sports. By missing two years at school, I have lost a lot of friends«. Betka feels inferior. Asked why she has not yet married, she says that there is no problem to establish a contact, but that she finds it difficult to maintain a longer relationship. She is constantly afraid of marrying and having children. She doesn´t want to complain, knowing that everyone has his own problems, but she does add that she has often pondered how it would be if she could lead a »normal« life. Her self-confidence is strenghtened by the fact, that she is able to work, to help at the farm, to drive , to feel independent.

  Aga, had a similar experience when she returned to her school without hair. For her wig she was mocked mainly by the younger students. But everybody knew she had a wig, her girlfriends were avoiding her, probably afraid of catching the disease. Mare felt »rather weird« when back at school. Everybody knew about his illness, having been told by the principal. Himself, he couldn´t add much to that, because he didn´t know much.

  Nena, aged 14, returned to the school one month after her tumor was removed. While nobody around her spoke about her affliction, she was under the impression that the whole valley knows and that many have already »buried« her.

  And what did Rina have to say? She is angry with the doctors, who had deemed unnecessary an operation that would make her taller. Her parents support her wish. Treatment for leukemia, at the age of 4, left her small, surgery could add some 2 inches to her size and the doctors refuse. Her mates are asking what would be different if she became a little taller, what is actually bothering her. Everybody knows somebody smaller than himself, one of the female doctors blushes – she is no taller than Rina. Driving a car is a problem for Rina, she can barely see over the wheel. The worst is to be called »the little one » at her job. Nobody was really moved by this there is another girl in the group, called »the little one» at her job, a bit taller than Rina and not resenting it at all. But Rina cannot be consoled to-day. We also find out that Rina was angry with her mother for allowing her to be treated at all. Here, others agreed, many of them have gone through such a phase. Finally, Rina enforced her will, was operated upon and became taller by 2 inches. There were post-operative complications, she was on crutches and in rehabilitation for quite a while. She is fine now, happy, has a full time job. With some luck, all went well. A surgeon does not decide easily on an intervention if he doesn´t see the need, there are too many possible risks. In this case, however, we have to admit that Rina was right.

  Everybody agrees that it is easier to talk with somebody who know the disease or has been afflicted himself. It is more difficult with »outsiders« who don´t really understand. «They don´t ask much and they actually listen even less.« The boys especially miss being able to talk to girls, they say they are afraid of talking »about these things«. Here Mate smiles and mentions the biology lecture at school with a seminary on leukemia, held by a friend of his. Leukemia is an incurable disease, they were told. He thought about speaking up against this nonsense, telling them he himself has been cured of it, but decided to hold back, they wouldn´t believe him anyway.

  This very group demonstrated how these youngsters form bonds between themselves, based on common troubles and, how they can influence each other by exposing their problems. One of them mentioned his chronic fatigue and all of a sudden we found out that many have the same problem at times. We have »aired« many a problem in this way and made it less severe.

  Many have problems in the job sector. One told us that even by mentioning his childhood disease made him unacceptable for most kinds of employment. Right now he holds a temporary job. He was also pronounced unfit for the army. On that occasion he was overwhelmed by questions – why? All his friends were enthusiastic about soldiering, some even wearing army boots prematurely and dreaming about it. So, being »unfit« was a calamity. Thinking about his disease he began to feel inferior. They imposed on him some limitations at the job exchange office, which makes it more difficult to find a job, he is regularly turned down after interviews. Meanwhile, I can attest that the boy is in good health, without evidence of disease, has learned to be a precision mechanic with a degree. We shall be able to find him a job, but why all the obstacles?

  Andrej didn´t bother, when he was declared »unfit for the army«, his friends envied him and he was quite happy about it.

  Our participants returned, time after time, to conversation about parents. Betka thought that her mother has suffered more than Betka herself: She had lost her husband early, remained alone with four kids, one of them severely ill, and a small farm. Betka admires her for coping with it all. She remembers her mother just crying at her bedside after surgery. At that point she wished her mother would stop visiting for a while. Her mother is still too anxious and pessimistic and so is her older sister, who also overprotects her at times. Everybody has been intruding into her life too much. When Betka broke up with her boyfriend, for instance, everybody was at her, why did she do this, not understanding at all.

  Neva, too, has similar problems. Her mother does not want her to have closer contact with boys, afraid it may be harmful to her health.

  It has been mentioned, that the protective role mothers played was limited to certain areas. Working at home, cooking, cleaning and such, the girls are left to be independent, but not when it comes to boyfriends. There are fewer talks about these things with their fathers, »who are even more afraid then the mothers«.

  They are also telling us about the difficulties with growing independence. Mare was in constant conflict within his family until he moved out and went to high school in another town. There are no more quarrels now, he only visits for weekends. Most of them yearn to be more independent, to move away from their parents. At times, one or the other makes it for a few months if he lands a temporary job, but it is not easy: they are too used to the parents always being right and to accepting their judgement.

  How come that I survived and others did not?

  Children who have been treated for cancer will always know other children, who have died of the disease, among them perhaps some newly acquired friends. How will they deal with this, how will they avoid feelings of guilt? Why have I survived and he did not? Questions, asked by all of us, who have survived an accident, fatal to others.

  We talked about this within a group, facing recurrent disease and then death of one of the boys who had been a regular member. To avoid such disasters we, as a rule, start with group meetings only after at least 3 years after off treatment. However,
there is always an exception. A boy joined the group much sooner, because his cousin Setka was already a participant – a survivor of leukemia – and they were from the same town far from Ljubljana.

  They were late at the first meeting, shyly set down at the far end of the table, did not speak, just listened. Setka introduced her cousin, Rok, who also fell ill with leukemia 10 years ago, he was 14 at that time, then 4 years ago the disease recurred and last year recurred again, this time he received a bone marrow transplant. Being an adult now, he has been hospitalized on an adult ward. When we got to know each other a little better, he became quite talkative. He didn´t like it in the adult ward, much preferred the pediatric hospital where everybody knew everybody else. Asked how he coped with the disease recurring for the second time, he just said that the treatment was easier to take this time. What bothered him was one month in isolation. We did not ask him about his present concerns, fears and anxieties. There would be time for that at following meetings. But there was no time, the next meeting was already about preparing the group, including Rok, for the spa. We also had to