the spine; they are now midgets, depending on their parents. Some, with severe brain damage are living in homes for the disabled.
Somewhere in the beginning of this booklet I said that we shall not talk about medical and physical problems. However, I now think that it would not do justice to these young people, living on the fringe of our society, if I didn´t even mention their fates. True, they are somehow »taken care of« even if they deserve better than the circumstances allow. Their problems are screaming at us, not to be ignored. On the other hand, this booklet is about hidden things that deserve our attention.
There is another chapter that must be written. I pondered how to go about it and remain on firm ground without inducing undue fear. I decided to tell the truth without holding back.
The worst aspect in the life of those who have suvived cancer as children, is the emergence of a »second tumor«, i.e. a new cancer of a different kind. Fear, uncertainty about treatment and outcome is, naturally, overwhelming for both the patient and his parents. The whole calvary begins anew. We know former patients, who survived three different kinds of cancer. No doubt, they bear consequences, physical and mental, yet this very fact is a witness of how tough they are. You should meet a young woman, one of 45 patients in Slovenia, who survived cancer in childhood and were stricken by a »second tumor«.
Marica had been treated for leukemia in 1978, when she was 6, with chemotherapy and radiation to the head. Afterward she was regularly followed at the pediatric clinic where, in 1986, at age 14, a tumor of her left jaw was discovered, sarcoma of the bone as it turned out. Again she was put on chemotherapy and then had her tumor removed by surgery. The whole left lower jaw had to be removed. The defect was glaring, but four years later, when she was 18, skillful surgeons covered it by implanting one of her ribs. After successful treatment of her second cancer she became a regular guest at our Institute. All was well, the cosmetic surgery was nicely done. She did not have an easy time at school, but she did have a job, a drivers license and a lively social life. At the age of 24 she married and had a son. She grew overweight during pregnancy and later on but was otherwise happy. She was followed at our outpatient clinic of the Institute of Oncology and I also came to know her husband and son. When her little son was 2, we discovered a cancerous growth, in Maricas thyroid gland this time. An unpleasant treatment followed, which included surgical removal of her thyroid. She also received radioactive iodine and was put on long-term medication, looking for just the right dose of her hormonal substitution and then maintaining it. Finally, all was well again; it is now 4 years since her treatment for thyroid cancer. Even though this third episode of her fight with cancer had a lucky outcome, all the stress took its toll. Marica has marital problems, her husband has started to drink. According to Marica, there are problems with her mother as well as with her step-mother. Luckily, her son is doing fine.
Psychological state of health.
A healthy psychological attitude is described as an intention to keep under control the life-threatening disease which has caused emotional imbalance, a change of priorities in life, fear of the unknown, but also some positive changes.
Each former patient is also asked, at first visit, about fear during the disease. Many do not mention fear of death, but rather fear of pain, injections etc. Pain itself is not often well remembered, rather fear that »it will hurt«. Taking a good look at their hands we notice scarring from chemotherapy intravenous injections. Their veins are scarred, difficult to palpate and to inject. Nurses, who take their blood samples, know this very well. Many are afraid of renewed puncturing, some to the extent that they skip the visit with us.
Years after finished treatment most of their problems are connected with anxiety, fear of recurrent disease (or dissemination), doubts about the outcome of future tests and unpleasant memories of cancer treatment. These latter again take expression in anxiety, emotional instability, depression. We try to help here with group sessions.
In those who start choosing their partners or wish to have children, the question arises: shall I be able to have children? Will the children then be in danger, may they inherit my cancer? Only an expert can answer these questions, where answers may sometimes be clear one way or the other, sometimes rather involved. We do know some forms of childhood cancer based on genetics, but inheritance is not a simple process. As far as fertility of former patients is concerned, we may be misled by all our sophisticated testing. Remember Metka? This problem is particularly sensitive in males.
Social well-being
Here our concern is to neutralize the effects of cancer in individuals, their place in the society and relations with others. Mainly, this is about familial, marital and sexual problems, about social adaptation, jobs, fear of one´s condition becoming public knowledge, stigmatization, difficult re-entering the school or the job, change of professional priorities, discrimination. It often happens that a former patient is refused life insurance because of his previous illness. Just to-day I wrote a certificate for one of them, who has been followed without evidence of disease for 20 years now. They may have problems with refunding, for instance dental repair, necessary after radiation treatment, they may be denied a drivers licence. For several years we were obliged to renew yearly health certificates for driving. Apparentlly, some people could not grasp that the patient with cancer is, in fact, cured. Many a former patient will tell how his story is met with disbelief, or at least amazement. They also face discrimination based on the previous illness, though this is actually illegal, and, when applying for life insurance-where I am not sure if it is illegal or not.
It is up to us, physicians, nurses, psychologists and others to fight this ignorance, to spread information, awareness and tolerance. We are facing a lot of hard work, for, as you well know, changing attitudes is the most difficult social change. The Foundation, which we started, is dedicated to this; it is too early yet to evaluate it´s possible success. We do believe, however, that we have already achieved some modest advances and this is our incentive for continuing.
Mental well-being.
Mental well-being means the ability to hope and, confronted with cancer, to look forward and have a positive aim in spite of the uncertainties connected with the illness.
Mental problems may also be sadness, a feeling of wasted time during illness. Hope and a sense of life´s meaning are of importance. Some have emphasized the role of moral support as well as religion.
This loose concept, into which we have tried to frame our thinking, will show how complicated an evaluation of a life´s quality can be. There is also a question, what time is the most suitable for such an evaluation. We have most data on the patients´ experience during the illness and treatment itself, much less for the years after that, which makes it more difficult and more complicated. Remember our former patient Mirko, who for more than ten years was unhappy, depressed, angry at the whole world. Then he married, had a child and became happy, all the bad things of the past forgotten. Which time period is to be evaluated?
How does our own nature, our character, with which we are born, reflect on the quality of our life? Let us look at two stories and how they differ in their authors´ minds. The stories of two former patients are rather similar, even the psychologist could not find any significant differences or abnormalities with either of the two young women.
Among the sick children, some possess a sunny disposition which takes them through the illness, its aftermaths and further through life. Jožica is such a lucky one. She is 38 years old now, married, mother of two teenagers, an accomplished seamstress, content with her work. When 9 years old she was treated for leukemia, was two years on chemotherapy, received radiation, was several times in the hospital alone, without parents, but has no unpleasant memories from that time. While on the road to the hospital her parents cried, she was »laughing and singing«. For some time after the treatment she still had »poor blood« for which she received some tablets; these didn´t work so she stopped taking them. She continue
d with a glass of home-grown wine, bread with minced lard, beans and sauerkraut and her appetite returned, with it her health. Her psychologist wrote a very short report, mentioning that »her test profile is harmonic«. She shows up once a year for follow-up, is healthy and happy each time, at times accompanied by her husband. She also reports happily that her kids are healthy, lively, doing well.
Lina was treated for Hodgkins' disease (a form of cancer of lymph glands) at the age of 11. Eleven years later she first visited our Institute for follow-up. She remembered »everything« from the time of her treatment, she said. How it began with cough and fever, how a »shadow« was discovered on her chest x-ray and she was immediately sent to Ljubljana. She was afraid and dismayed, this being just before the first of May holidays. From admission to the pediatric ward she remembered a grouchy nurse saying: «Why do you come now, nothing will be done over holidays anyway, couldn´t you wait for two days? «She remembers the tests, the injections and medication, the worst was »that infusion which always made me throw up«. She took medication reluctantly and to this day has an aversion to tablets of all kinds. She