tailored to the age of the little patient. There are movies and cartoons that present the disease concretely but in age approprate terms. The child can get involved by rooting for the positive side. In the case of leukemia, for instance, he can take sides in a cartoon battle between good and bad blood cells. When, however, the child is capable of understanding the reality, he is best treated as an adult. Here we are probably still making mistakes, the children often being more adult than we assume. We are also often wrong because of our own discomfort. It is not easy to tell anybody, least of all a small child, how seriously ill he is. Different tools for help and explanation are just that, nothing can really replace a warm, friendly conversation, with a hug by the doctor, reasuring the child of loving care and safety. The nurse, who spends much more time with the child than the doctor, doing the »dirty work« of sticking needles and such, and is the central person on the ward and sometimes a mother surrogate. She is in good position to explain a lot of things. The mother, too, has to know the truth. She must be made to trust us and will probably find the best way to bring the truth to the child. But where is she to find the strength to do that? I am telling these mothers that that is a part of the treatment, that this is their part in the process of the childs getting well, that it is a difficult task which has to be done and is just as important for the final outcome as the doctor´s skill and the medication´s efficacy. Perhaps co-operation in the treatment will help them to get rid of the feeling of being useless and insufficient. Sincerety helps to reduce future emotional problems and makes future decisions about treatment easier. There are some who take a different view; revealing the whole truth may lead to depression. Our experience points to the contrary, it has shown that both the patient and the parents cope easier knowing what to expect. When not facing reality, the child is more prone to feel stygmatized in to retreat in isolation.
It is more difficult to leave the necessary decisions entirely in the hands of an adolescent. It does happen that an adolescent patient refuses treatment of recurrent disease. Even if a 16 or 17years old is capable of making independent decisions about nearly everything, he still often lacks the worldly wisdom to appreciate the consequences of his decisions. This kind of situation is most difficult for all concerned. The doctor´s duty is to find out the reasons for the negative attitude and convince the patient to co-operate.
Marta found out about her disease from the file, but apparently not enough about its nature. Even though she probably did not imagine it was anything good, nobody came with an explanation and she did not talk with her mother about it.
What then, if the parents don´t want to tell their child the truth? Then we explain to them the benefits of being sincere and of all the negative aspects of witholding the truth. We have no right to force the matter on the unwilling parent, of course. But we should always explain clearly, what we know about the disease and the treatment. Involved explanations with lofty words are of little use in these conversations.
Early retirement?
Ivan had his left eye removed because of a tumor – retinoblastoma in 1965, when he was 2 years old. He presented at the Institute of Oncology in 1986, already 23, preparing for plastic reparative surgery and seeking our opinion. Ivan has two sisters and a younger brother and is on good terms with them. He is doing well at school, his social life is OK. He had studied sociology but did not graduate, for lack of interest. He is playing contrabass in a jazz band. It looks like he is well adjusted and, except for the absent eye and the surgical scar, we find no physical abnormality.
He was operated upon and provided with an eye prosthesis, with good cosmetic result. Additional examinations revealed no ill effects of treatment, he came to follow-up only rarely, had to be repeatedly reminded. He showed up in 1995, had now a consort, pregnant with his child and they are both concerned that the child might inherit his disease. He has no other health problems, just the hollow eye socket. Concerning that, we talk about possible plastic surgery. I also explain that it is unlikely that his form of retinoblastoma would be inherited, since there is no history of it in his family. Unfortunately, a chromosome test of his tumor´s cells cannot be done because many years have passed since his surgery in Zagreb and the specimen is unobtainable. Even so I suggest an early consultation with a pediatric ophthalmologist after delivery. Ivan again accepts an invitation to a follow-up visit; when seen he is healthy and so is his three and a half years old son.
He works with a musical publishing house, is satisfied, just easily tired when working with the computer. But he is not really enthusiastic about his work, even if rather capable. He wants to talk to our social worker about possible disability pension. I told him about a blind musician I read about, who didn´t consider himself to be an invalid and, on the other hand, a blind housewife who did.
The clinical psychologist concluded his testing of Ivan with this: «Intellectually high above average with somewhat rigid thinking processes. Evidence of pronounced neurotic inhibitions with consequent diminished ability to cope with problems of daily life and with narrowed life-space«.
We try not to be too lenient in such cases, considering the waste of such a talented young man not finding his place among the usefully employed. Generally, we urge them to work. It is not impossible that Ivan would somehow succed in his quest for a disability pension, since »he had cancer, after all«. But we are fighting against forced early retirement for these young people, which readily happens in these days of high unemployment. The parents also sometimes push these »children« into retirement, seeing there a guarantee of sorts against their own future inabilty to provide for them.
A while ago I was trying, with the help of social workers and our ministry of work and family, to analyze the data on our former patients – how many are needlessly retired, how many are able and willing to work. We have no answers, this being »unnecessary work«, who is going to do it and who pay for it? Though such an analysis would probably save money in the long run, there is no funding for it at this time.
»Only now I know that all this really happened.«
(Zejna, 1998)
Group meetings
Our experience accumulated, but so did our problems. We were now able to help the majority of our former patients with their physical late effects of treatment, alleviate or even cure them. We were not sure, however, how to help them with their emotional problems, which have turned out to be the chief obstacle in their taking their proper place in Society, in school, at work, in short – in life. «Scientifically« (objectively, with psychological and intelligence testing) it was rather clear that most of them were unable to use fully their at times quite high intellectual abilities because of suppressed emotions, shyness, depression, tendencies to isolation. I asked our clinical psychologist, who has been all these years entrusted with the difficult task of talking to them, testing them, evaluating the results, »what now«? Do we know what is permanently preventing these young people from achieving their proper place in the world. True, we have learned a great deal, but are we smart enough to put this knowledge to some use? How can we help them now, when we have wasted so much time being ignorant? Recommendations, please! »Well« said the psychologist«, and scratched his head »I can´t really help them. They have to help themselves. «But how? What he then recommended were group meetings of10 to 12 youngsters who have survived cancer. He has had experience with similar group meetings of adults who are, however, nothing like our »patients«.
So we started, joining forces, we doctors who know something about cancer and the modes of treatment, and the psychologist, who knew, what might go on at group meetings and how they can be made useful for those who participate. Our nurse joined us as well; she knew most youngsters from having taken blood tests and the like.
This being a bunch of people with many questions begging answers and problems begging solutions, we held our first meeting just in order to get to know each other better. We realized that the atmosphere we, the »experts«, would be able to create would be cru
cial for the success of the enterprise. Our atmosphere should make the participants feel safe and dare to talk frankly. Each former patient should have the opportunity, and the courage, to tell himself and others: «I have had cancer and now I am cured«. This »confession«, spoken loudly, should relieve the burden of secrecy most have carried troughout life to this point. Once accepting the reality, it will be easier for the patient to deal with it and with problems still in store for him. The meeting should also demonstrate that nobody is unique and alone with his trouble. Each is sharing them with a lot of others, many of them present at the meeting. We began our work in the hope that the youngsters would speak about their social problems, their anxieties, their fears. They could exchange their experiences with the hospital, the doctors and nurses, treatment, parents, friends, school-fellows.
All this should help them to become more independent and easier to get on with their lives. We were pondering on how how to make the best of it and, whether it is at all possible to be of some real help in this way.
Here I was reminded of a story I heard at a meeting dedicated to