Childhood cancer survivors: how to face the upcoming challenges?

Ms. Ada Yuen
Clinical Psychologist
Children's Cancer Foundation

Childhood cancer is life-threatening and it is hard for anyone except the patients and the family to imagine the ordeal. It is absolutely normal for patients and their parents to feel apprehensive, sullen, outrage and despair. The emotional turmoil is actually a normal reaction to an abnormal situation. In a way, it is a natural response to any significant life stressor. There is no reason why we should deny our shock, despair, sadness and anguish as they are all part of our genuine inner experience. Acknowledging our emotional upheaval is the first step towards a healthy coping. Understanding and accepting our emotional response is also quintessential in preparing ourselves to face the immense challenges ahead.

Why am I still feeling sad, hopeless and anxious even after my child has completed the most critical phase of the treatments?

After acknowledging that one has braved the most critical treatments, the surviving children and their parents are still not free from worries and fears. One may ask, "Why am I still feeling sad, hopeless and anxious even after my child has completed all treatments and seems apparently stable." It seems that nothing is too reassuring.

The stress incurred by cancer can come to haunt us even after we have passed the apparently critical stage. Sometimes when we are facing acute stress, our levels of emotional, cognitive and physiological arousal are all boosted up. The heightened emotional sensitivity, seemingly round-the-clock worries and a sense of restlessness are all defenses we use to weather the trying time. The inflated arousal can be sustained even after the major threat has subsided. That explained why many parents and surviving children still feel tense, worrisome, edgy and depressed in the absence of any immediate threat.

Normally, the acute stress responses will disappear gradually as we move further away from the cancerous threat unscathed. However, if the heightened arousal continues to aggravate, it can be a tale-telling sign of problems other than a prolonged psychological reaction to an acute stress. The cancer experience may have triggered the onset of other psychological problems which are previously unnoticed. Professional help may be needed at this point.

Where to go from here? Readjustment to a new life.

Challenges for childhood cancer survivors are enormous. Residual emotional upheaval, constant worries about relapse, back to school issues, unjust social discrimination and self-doubt are just a few of the major problems encountered.

Back to school issue

School attendance is quintessential for children as it allows them to develop a sense of belongingness and an identity within a social group other than their immediate family. School life is an opportunity for the children to enrich their independence and autonomy.

The school environment offers children opportunities to play and interact with same age peers as well as to participate in sport activities and outings. Classroom and school playground are important places for the children to acquire social rules and regulations, conventions and customs as well as socially acceptable behaviour. A speedy return to school also reduces the amount of lesson missed and consequently minimizes damages inflicted on academic performance.

Problems encountered

Prolonged absence from school since the diagnosis means that the children are likely to face mounting difficulties when returning to school. The child may have conspicuous difference in appearance. He or she may be fatter due to medication and is likely to lose a lot of hair due to chemotherapy. Teasing, rejection and discrimination from other classmates may arise due to ignorance and inadequate understanding of the disease.

Even after the child has started going back to school, the child may still have physical discomfort like fatigue, nausea, tiredness and lack of mobility. Physical problems can create more difficulties for the child to attend school for the whole day or participating in all school activities such as outings and sports.

The knowledge that the child may relapse is always at the back of the parents' mind. Parents inevitably have to make a series of complex judgments about the child's physical and psychological conditions. Sudden misbehaviour, temper outburst and somatic complaints need careful interpretation. Parents face the difficult task of distinguishing between genuine illness and mischief. To prevent the child from deliberately avoiding school depends very much on parents' judgment.

Lagging behind in school work

Understandably, the child may find it difficult to catch up with the missing school work. It can be very frustrating to sit inside a classroom with little comprehension on the subjects taught. Lagging behind in studies can cause apprehension and serious self-doubt on the child. The problem should be tackled prudently. Tutorial classes, offered by the school or private tutors, can be of help in assisting the child to rekindle his interest in learning.

Learning difficulties caused by late effects

Children who have received radiotherapy in their brain or other part of their central nervous system may suffer from late effects of irradiation. The late effects which often become more salient after one or two years are manifested in the form of impairment in cognitive functioning. The result is that a child's intellectual abilities such as IQ, memory, attention and mental flexibility may be compromised.

Late effects are devastating to the child's academic performance. However, remedial support offered by the family and school can markedly reduced the child's difficulties in learning. A study even indicates that children with families of higher educational background are more likely to improve academic performance. This finding may hint that family support and remedial help is crucial in assisting the children to maximize his or her preserved cognitive abilities.

Neuropsychological assessment needed

Neuropsychological assessment by clinical psychologist is recommended for children with cranial irradiation included in their treatment protocol. Ideally, the assessment should be conducted before the radiotherapy to establish a baseline for the child's overall cognitive abilities. Follow up assessments are needed after completion of the treatment and a year after the child is completely off treatment.

Neuropsychological assessment helps professionals to determine whether there is significant long-term damage on the child's learning ability, memory, intellectual quotient (IQ) and other cognitive abilities. Assessment results cast light on the kind of impairments, if any, suffered by the child. These findings often provide important information in explaining the child's school-related problems, learning difficulties and somatic complaints caused by psychological factors. With such information, psychologists, social workers, parents and teachers can then figure out possible rehabilitation or compensation methods. The move is a crucial step in helping the child to adjust to school education again.

Communication with school authority

Ideally, good communication between parents and teachers can facilitate the child's return to school. Patients and their parents often face the dilemma of whether to disclose one's illness or to keep it as a personal secret. Questions like what to disclose, to whom, how much and what follows the disclosure are just mind-boggling.

The notion that the school authority and teachers should be informed about the child's medical history and current condition is commonly endorsed by parents. Nonetheless, confidentiality and worries about inappropriate labeling may cause hesitation. School guidance teachers or school social workers are good liaison party between parents and schools. They are better trained in dealing with students with special needs.

Meanwhile, teachers, though often caring and supportive, may not have sufficient training on how to incorporate a cancerous child into the classroom. Inappropriate classroom management may run the risk of turning a caring gesture into overprotection and patronizing behavior. It will be far better for the teachers to team up with the better informed guidance teachers and social workers when dealing with the child. Together, they can help the child to redefine the aim of schooling and to set appropriate goals to actualize the child's potentials. Major purpose of schooling can be broadened from mere striving for academic achievement to learning and participating in and through a social group.

Changes in self-image--- a blessing in disguise?

Childhood cancer sets children apart from their healthy same age peers. Some childhood cancer survivors may feel isolated and alienated from other children, knowing that they are vulnerable to relapses and other chronic health problems. Nonetheless, there are also a considerable number of survivors who see their one-time ordeal as a learning opportunity. They perceive themselves as special or being chosen in some way. These survivors become emotionally more mature than their same age peers.

Struggling with a life-threatening disease and weathering all the painful treatment procedures may help the children to become more considerate and compassionate. Empathy and greater awareness in one's inner feelings may develop. They may also hold a more positive and easy-going attitude in life. Priorities and concerns are given to one's health, social relationships and quality of life rather than mere academic and career success.

Methods to face discrimination and to rebuild one's self esteem

Research studies on the impact of cancer survival on children and adolescents show mixed results. Some studies have found that children completed cancer treatments have few adjustment problems whereas others have found evidence of negative self-concepts and possible difficulties in social relationship.

Studies investigating the stereotypical views on children who have been treated for cancer is well documented. Researchers have found that subjects rated healthy child more positively than children with cancer in remission, regardless of whether they are still undergoing treatment or not. The process of stigmatization generates unfair expectations and prejudices.

Children treated for cancer may be seen as less attractive due to physical side effects of treatment. Prolonged absence from school as well as delayed social and academic skills often lead to dismal ratings.

Unfair criticism, stereotypical labeling and blatant discrimination are major sources of distress. They are uninvited but are sadly unyielding consequences of people's ignorance and lack of understanding. To combat the stereotypes and to minimize their damage on one's psychological well-being, one can try their hands on the following strategies.

1. Acknowledge one's negative feelings experienced such as anger, sadness, hatred, loneliness and discontent triggered by the social bias.

2. Revisiting moments or incidents that counteract the stereotypical views. For example one may remember the incident when one is motivated in studies, outgoing and has self-confidence in meeting friends. One adolescent patient once suggested that he felt he got a grip in life when he was in his sickbed. He recalled he was able to crack jokes with other patients even when he was very ill. He was proud of his insurmountable sense of humour.

3. Take time to visualize episodes of positive experience in one's mind. Try to rekindle the uplifting feelings surged when savoring the good moments. Stay with the positive self.

4. Ask yourself what does that particular positive incident tell of your identity. What does the positive experience tell of who you are and what you are capable of? For instance, a patient may realize that he is actually a very determined and witty person by reviewing his life journey. He may discover that he has the ability to go through the life-threatening illness and all the painful medical procedures. He may be scared and apprehensive when undergoing treatment but that is normal. What is important is that he has the ability to go through the darkest hours in life.

5. Honor all that you have been, all that you are now and all that you will be. Accepting oneself is the strongest protection you can offer to your own soul. Remember you may not be able to change other people's point of views in a day and you may never be able to. However, others cannot hurt you unless you let them. Do not forget the fact that you have the choice to choose to accept and to love yourself as who and what you are. You are also entitled to appreciate your own identity, characters and abilities. Acceptance and appreciation are real source of serenity. You can live with your brokenness and in spite of it.

6. The Zeitgeist has changed and it is now an offence to discriminate others base on their gender, age, disabilities and other physical or social characteristics. Seeking equal opportunities at all front whenever you see your right has been infringed.

7. Participating in support groups for cancer survivors and their families is often a good way to establish an emotional safety net. Sharing experience, problems and often unspoken feelings with other childhood cancer survivors and parents is an effective channel to reduce one's anxiety and self-doubt. The group allows the patients to normalize their difficult feelings which are hardly understood by their healthy counterparts. A strong supportive network helps the families to reduce their sense of isolation and helplessness.

A concluding note

Surviving childhood cancer is a triumphant landmark in one's life journey. As for the child, it can be an opportunity for growth. It is a life lesson whereby the seed of empathy and emotional maturity is planted. As for the parents, it can be a constant reminder that the child is a precious gift given to you. You have learned through the little child patience, kindness, hope and strength. All the beauty of humanity you can imagine in life.