by Berta Jereb
either problems or effort. He decided to seek work, studying further had no appeal to him. In his opinion, he lost the ambition during that fourth year, when his marks dropped; it was his first »failure«. He works as a conductor on a local train-no particular education necessary –likes his job, has a lot of free time and has no wish to advance. The psychological testing at that time indicated that »Intellectually equipped highly above the average. There are certain mild abnormalities in the sense of suppressed aggression, probably with anxiety and depression; for this reason his efficiency tends to be limited or, rather, he tends to be passive. «Zvonko is in regular follow-up at the Institute of Oncology. He is fine, content with his job, is married with a son and a daughter.
Today, after many years, I meet Zvonko on the corridor of the Institute, where he is for his yearly check-up. The whole family is with him: wife, two kids. I ask him to see me too, would like to ask him a bit how he is doing, what he thinks about his illness now, are the yearly visits a burden, the impact of the disease on his life? Again he mentions his forced staying with his grandmother has hurt him most of all. «I was really hurt. But, when we built our home and first mother and then father came back, all that was forgotten. Then I was convinced that I am healthy and that everything will be OK«. He maintains warm relations with his parents, is happy in the family and content with his job. He can´t say that the disease has had a great impact on his life, but of course, who can know such a thing? But he also says that things would probably be different, if he had retained a deformity or disability after the disease or treatment. He again expresses his gratitude and says: «I often think of what would have happened to me; would I be alive at all, if they didn´t recognized at the time that I had to be treated in Ljubljana, for it took quite a while to establish the true nature of my disease.«
Listening to people around me, their problems and complaints, I sometimes ask myself whether the cruel experience of a child with cancer has also made him more aware of his preciousness, more grateful for the good things that also came his way? Talking to them whetted positive emotions in me, who also has had a lot of good along with bad things during my lifetime, but which I tend to forget.
Parents
More and more children are cured to-day, yet the diagnosis of cancer still means, as a rule, prolonged, difficult treatment, disruption of family life and of school, anxiety, fear.
Parents, when they understand the seriousness of the situation and when they accept the risks and difficulties, may contribute a great deal to the success of treatment, as part of the team. The diagnosis of cancer is a cruel experience for the whole family, often affecting the mental stability of other family members. Therefore it is necessary early to establish trust and cooperation of the whole family. Besides the little patient and the quality of his life during and after treatment, we have to consider the others. During the long-drawnout, painful and demanding treatment of the dangerous disease, the little patient needs full support from the parents. They in their turn, must have enough inner strength and be prepared to cope with all sorts of problems. The stress during treatment can be as severe as, when the diagnosis is revealed. The child must visit the hospital even after remission; and when the disease recurs, which is not so rare, everything starts anew, with renewed anxiety and fear.
Some families want to participate in the treatment some don´t. We have no right either to force participation or to make them feel guilty, when they don´t feel ready to cooperate.
Several studies have shown the importance of support provided by other parents in the same position, but perhaps with a bit more experience. It is easier to identify with them, to overcome the feeling of being left alone. The positive experience of others is likely to induce courage and hope. The sooner such help arrives, the better. Exchange of experience, good or bad, enhances the ability to cope. Parents who make contact with »fellow sufferers« tend better to understand the disease and the process of healing with its problems. They feel more competent, not just helpless observers. This is especially true in groups of parents with children in different phases of the disease and treatment. There are those who were just informed about the diagnosis, those whose children are in remission, or preparing for surgery, or beginning new treatment, or, sadly, in terminal phase.
The families´ problems are manyfold; sometimes the parents have to live apart so that at least one of them can stay with the child. In difficult family situations, sometimes its members form closer attachments, most often between the mother and the sick child. This may also mean neglect, even permanent, of the spouse and the other children. Quite often it comes to divorce, due to stress, separation, feelings of guilt and helplessness – an additional burden on the child. Parents all too often disregard their own wishes, feelings and interests, thinking they have no right to relax and feel guilty if not worrying all the time about their child. Often they lose contact with their friends, sometimes on purpose, because they feel stygmatized by cancer in the family. At times, the »neglected« siblings suffer, and then may start to act improperly. Parents also, at times, are overprotective, are embarrassed to admit that they need to sleep or eat when the life of their child is in danger. All this can be eased by understanding, with support from »fellow sufferers«. It also helps by being able to spend as much time as possible at the child´s bedside without neglecting their own or their other childrens´s needs.
So, we have to make it possible for them to be with their sick children, to meet other parents in the same position, to cooperate with the health workers, including psychologists. Conditions in this area have improved markedly during the last decades. Parents from out of town have somewhere to stay in Ljubljana now, also with their sick child if feasible. Psychologists participate in the pediatric cancer wards for direct support to the older kids and the parents. There had been times, however, when all this was not available and the sick child was in the hospital alone, day in and day out. Lately, the parents have the choice of spending almost all the time with the child. Nevertheless, they might at times feel guilty about not having taken advantage of this opportunity, not spending all their time with their sick child and devoting some of it to the siblings. Uninterrupted presence in the hospital may estrange one or even both parents from the other family members. There may be no time left for other tasks and problems, because of exhaustion, both physical and mental.
Cure is only the first step in healing of the family.
How much do we know about future physical and emotional problems of these parents and how to prepare for them? At the end of treatment, fear, anxiety and, quite often, isolation of the family, remain. The parents, on one hand, are anxious, sad and ashamed at times with guilty feelings about their child' illness. On the other hand are friends and relatives, probably feeling sorry but unable to talk about it freely and openly. They would rather avoid meeting the family so that the unpleasant subject does not come up. Slowly, talking about cancer becomes a tabu. Yet our duty remains to alleviate the trauma as much as possible. Here work with parents´ groups has proven to be of great value, also after completed treatment. We are facing a lot of obstacles in this area. The main one is certainly an almost total incomprehension of the need to follow these surviving patients through their lives. To begin with, the doctor who cared for the child is reluctant to inform the child and the parents of this need. The parents, who want to protect their child from anything unpleasant, would rather skip the follow-up, so would a teenage survivor who wants to forget all about it as soon as possible. Alas, it is not as simple as that. The very fact of not reconciling to the consequences of the disease and treatment that demand follow-up, suggests that they have not got rid of their fear as yet and that they need some help.
For the time being, such help is being offered in the form of group meetings of former patients. Such meetings would be necessary for their parents as well. This is not feasible, however, at present, due to total lack of public understanding. Perhaps the parents themselves will see reason to join fo
rces and give our Society a push in the right direction in this area. As far as psycho-social help to families is concerned, we are still rather backward in our country, even if we were among the first to recognize the need and establish a system of follow-up of childhood cancer survivors. Those who do not participate are the ones who need the help they refuse. They still carry the seeds of fear, which they can only get rid of by opening up and welcome the help we are offering.
Some parents are overprotective. This is often revealed at the first visit to the Institute of Oncology, where the former patient is treated as an adult by us. The transition from the pediatric to the adult oncological follow-up is supposed to help the process of growing up. It happens, that the little patient grows quite attached to his pediatrician, or the other way around. With the first survivors whom we invited to continue their follow-up as adults at the Institute of Oncology we also met with resistance from our colleagues, their pediatricians. «These are our patients, after all« is what we heard. Also, informing the children that it will be necessary