THE CHILDREN'S BRAIN TUMOUR CHARITY

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Problems after Treatment

Adjusting to 'Normal' Life

After treatment some children will continue or begin to experience problems. These development problems include growth, intellectual development, problems with the heart, lungs and kidneys as well emotional development. Help is available.

The younger a child is when they are diagnosed, the more likely they are to develop learning difficulties. This is because their brain is still developing. This is one of the reasons that radiotherapy is not always a first choice of treatment in children.  

Sometimes learning difficulties may not become obvious, until a few months or even years after treatment. 

Key Concerns raised by children following treatment include:

  • Weight gain caused by treatments (including having a ‘moon’ face and ‘puffiness’)
  • Hair loss/having to wear a wig
  • Having to wear a hearing aid
  • Not being as tall as their friends
  • Having panic attacks.
  • Fears about fitting in and coping
  • Not being able to do as their friend do
  • Slurred speech and poor vision
  • Co-ordination problems/ being in a wheel chair
  • Missing out on favourite activities
  • Having to have different food (special diets)
  •  
  • Not being able to do PE /balance problems
  • Fear of injury ‘getting bumped’ ‘breaking limbs’
  • Memory problems/finding school work hard
  • Fatigue
  • Difficulty understanding instructions/organising their thoughts/poor memory
  • Trouble keeping up their peers
  • Experiencing sleep problems
  • Over protective parents/lack of independence
  • Loss of confidence and loss of friendships
  • Feeling sad and isolated/wanting to meet other
  • Wanting to know the facts about their illness (some children feel they are not given enough information about their illness)
  • Fearing the cancer returning/fears for their own mortality
  • Feelings of no more ‘fun times’
  • Feelings of being singled out for being different

“My parents think I don’t remember being in hospital, but I can’t forget. Sometimes when I think about it I start to cry”

“Just because I find it difficult to speak, doesn’t mean I’m stupid, I’d like people to understand that”

“I want to be ‘normal’ I want to do things like I used too, but I’m too tired” “I wish I could run around like my friends do”

Healthy Lifestyle

Leading a healthy lifestyle can have a positive effect on reducing the side effects of cancer treatments and the progression of the cancer.

Many children say that their physical health and the disruption to their school life are the most devastating effects of their illness.

Many children miss swimming (an activity few have been able to do during treatment). It may help to speak with a swimming instructor to help your child slowly increase their fitness.

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“I don’t remember what my life was like before the cancer. Aged eight, I was in hospital for two years with a brain tumour”

“People treat me like I’m going to break. I know I’m different but I just wish they’d try to treat me normally”

“People still treat me differently and I don’t want that”

School Life

Going to school gives children a sense of normality and many will wish to return as soon as they are able. Older children may be anxious about returning to school due to their personal appearance, loss of friends or peer related anxiety.

Whilst many children receive tutoring from a hospital teacher, they may still struggle when they return to school. Generally speaking, children best cope if there has been liaison between the child’s school teacher and the hospital teacher.

Children frequently worry about looking different. Especially, those who have had chemotherapy and have lost their hair. Other children’s curiosity can be very upsetting. Some children tell of being ‘bullied’ for the way they now look or act. Some children say teachers, friends and peers all treat them differently since their illness. There are concerns about being excluded from the group of friends and children preferring to play with other more able bodied children. 

The first step to overcoming problems is to talk with the school head about your child’s concerns and to make sure that the teachers and children have an understanding of your child’s needs and wishes.

 

Living as normal as possible

Your child still has the same needs as other young people – going to school, having friends, and enjoying things that were a part of life before their illness. You can help meet these needs by letting your child live as normal a life as possible.

Encourage your child to stay in touch with friends. Keeping contact is easier if your child can continue to go to school while being diagnosed and treated.

If your child is going to be in hospital for a long period, try to encourage their friends to come and visit them in hospital. Many children (and their parents) say that friends who have shared cancer journey are more accepting and appreciate what your child has been through.

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