today« he says, »it would be much better if the children were also told what it is all about, not only the parents. These then walk around sad and depressed and you think you will probably just have to die.«
We have also found that the personal characteristics of many a former patient were influenced by how often he had been admitted to the hospital ward. The conditions in hospitals and practices on admission have been undergoing great changes during the time our former patients had been treated. They still felt quite lonely in the 70's and 80's. Later we made efforts for the parents to be able to spend as much time as possible with their child, who should therefore not feel isolated and abandoned. Nevertheless, events during the treatment itself have had different impacts on former patients, depending also on their age and the mode of treatment. The youngest ones, at the time of treatment, do not remember fear as much as those aged 6 years or more. Yet, those who were under two now show most fear of being left alone, are less self-confident and readily feel abandoned. Those, treated between ages 3 and 5, are typically afraid of being abandoned, their most significant experience having been loss of contact with parents and siblings. Children who were treated when already in school, i.e. from 6 years on, have mainly missed contact with their schoolfellows and friends and are having problems with re-entering friendships, and, of course, school. Here, also, overprotection by the parents and consequent over-dependence, is playing a role. The school and the wider social milieu become more important here. When the child gets sick, the educational process suffers, he is also afraid of being stygmatized. He worries about physical disabilities and sometimes phantasizes about surgical procedures, about the disease itself, as a sort of punishment for wrongdoings, even for bad thoughts. There is also fear of death. Those adolescents, who had been brooding before about the remaning of life, bear an additional burden. They also are more afraid of recurrent disease and more often ask: «Why did it have to be me?« An interesting finding is, that atheist survivors report more fear during treatment than the religious ones, which could indicate a helpful role of religion in coping with life-threatening disease.
We were unable to find any significant influence on the personality of the survivors by physical damage, such as amputation of a limb, short stature, decayed teeth and similar late effects of treatment. These effects take different forms in different patients and it is not easy to connect them to personalty traits. Nevertheless, there were instances of inferiority feelings due to such physical damage, revealed in conversations. Remember the grown –up young woman, who lost one eye, as a child: «I cannot accept myself the way I look and I would not believe a man that he accepts me such as I am«.
We have also found that parents often for years and years live under the burden of the disease and are overprotective. Many a former patient, aged 18 or 19, would first arrive to the clinic at the Institute of Oncology accompanied by his mother. This first encounter at our Institute seems to be helpful in maturing the youngster. It is explained to parents that from now on it is his, the former patient´s, responsibility to take care of his own health. He must go to follow-up and follow instructions. The parents are no longer required to give consent, he has to decide for himself, has to take responsibility and, from his first visit at the Institute, face all the problems as a grown-up person. Surely, there are impeding circumstances, like the fact that 80% of them still live with their parents, almost as many are still not married, even if 70% have finished their school or vocational training. Our explanation for this phenomenon most probably is parental overprotection. However, overprotection seems to work both ways, too - a grown – up young man has said: «The nicest place for everybody is at home, even if it not in his best interest.«
One of the more important findings and typical of the problems faced by these youngsters is that only 28% have found work in their chosen profession; it is an indication how much of an obstacle their former disease represents in the job market. Discrimination on the basis of cancer in childhood is not at all rare. We have evidence of the employers´ fear that the employee will die since they don´t believe that cancer can be cured. They also fear frequent sick leaves since the prospective worker can´t possibly be cured. Our former patients report many instances of being stygmatized, of being considered less capable. Thus cancer patients face prejudice in everyday life.
It is not easy, naturally, to determine how much a disease like cancer directly or indirectly impacts the development of personality. Yet, a broad field is opening in which to explore the risks of psychological disturbance in children and their families because of their cancer in childhood. Therefore, good prevention, preparation of the child and the whole family for the treatment and for the time after that is very important .
It may be of interest that we have only one suicide among our former patients, while the incidence of suicide among 18-25 years olds in Slovenia is among the highest in the world.
Talking with our youngsters we get a strong impression of them placing a different value on their lives having survived a life-threatening disease. They value life more than their contemporaries, even if they are often satisfied with less than they deserve, because they are not always able to make use of all their abilities.
Our investigations show that lifelong follow-up of former childhood cancer victims is necessary. The late effects of treatment get more frequent with the time of observation, so does the need of medical and psychological assistance and consequently, the need for financing further research in several new fields.
As we take a look today at the group of youngsters cured of cancer during the last ten years, we see a number of adolescents and young adults, joining our Society. They bring with them their unique experience, resulting in tolerance for those who are different, a spirit of team work, of offering help, qualities badly needed in our Society. Our studies have shown all that, but also their need of assistance in taking their place in the Society, mainly because of emotional handicaps due to their former disease and treatment.
I have no doubt, that the efforts we are making in trying to improve their chances for survival and the quality of their lives are richly rewarded. Former patients are contributing to our Society as are their children. We should be grateful to them for these rewards.
At the end, another item: our »little knights« are themselves parents to numerous children. Having had a closer look at them, and their medical files, we could establish with certainty, that these children are in no way different from children, born to other Slovenian mothers in the same period of time. Their birth weights, their overall health, most probably also their beauty is equal. Well, speaking of children, I myself am a great-grandmother already and it is time somehow to bring my story to an end.
When I paid a visit to my granddaughter in the maternity hospital, it was her second child, she told me: « It was superb, quite different from the first time. No fear this time, I knew what was coming. »
Fear is really not good, let´s do away with it wherever we can.
Thanks and acknowledgements.
Thanks to my oncologysts, colleagues who invited me to the congress in 1986 to report on my experience with the effects of childhood cancer treatment. Thanks to the Ministry of Science of Slovenia for understanding and financing the project »Late Effects of Childhood Cancer Treatment« for many years. Thanks to the young researchers, especially Dr. Lorna Zadravec-Zaletel, the first to have helped me with the task. Thanks to registered nurse Janja Babič, also working on the project from the beginning, as well as later in the Foundation, solving many a problem by her dedication and friendship offered to the youngsters. Thanks to the little knights for enriching all of us with their painful experience, this booklet would obviously not be here if not for them. My special thanks to the first fifty of them, who accepted my invitation and shared with me their problems, anxieties and virtues, thus opening my eyes for further work. Thanks to my friend Žarko Petan, the writer, who encouraged and helped me to publish this booklet. And my main thanks to all peop
le of good will, our friends and benefactors, who attend our concerts and charities, who appreciate our efforts and make us feel all the time that what we are doing makes sense also in the eyes of others, not just those directly concerned.
Thanks to my husband Marjan for the translation.
My warmest thanks to my friend Giulio D'Angio for editing this booklet and also for everything I learned from him about treating children with cancer.
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