For many people, the end of active treatment is a time of relief and celebration, but it can also be a time of mixed emotions. Children and teenagers may expect life to return to normal straightaway, but the person who has had treatment may be re-evaluating their priorities. Your family might need to find a “new normal”.
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What children need to know?
It may help children and young people to know that cancer can be a life-changing experience for many people. Once treatment has finished, some people want life to return to normal as soon as possible, while others feel they need to re-evaluate their life.
The person who has completed cancer treatment may:
- Make changes – This period can be unsettling and lead to big life changes, such as choosing a new career, reassessing relationships, improving eating habits or starting a new exercise program.
- Continue to feel the physical impact – The physical effects of cancer sometimes last long after the treatment is over. Fatigue is a problem for most people who have had cancer treatment and it can make it difficult to complete everyday activities. Many people have to cope with temporary or permanent side effects.
- Worry about recurrence – One of the major fears people have is that the cancer might come back. This is an understandable concern, which can be triggered by regular check-ups and even minor aches and pains.
For more on this, call Cancer Council 13 11 20, or see Living well after cancer.
Like many adults, children may find it hard to understand why things simply can’t go back to the way they were before the cancer. They’ve had to deal with changes while their parent or other family member was sick, and now they probably want to get back to normal.
Your kids may:
- Expect the person who had cancer to bounce back – Often children don’t understand that fatigue can continue after cancer treatment is over. This can lead to disappointment and frustration.
- Become clingy – Separation anxiety that started during treatment may continue well after treatment is over.
- Worry the cancer will return – The cancer returning is often a big fear for children and young people, just as it is for the person who had cancer. You can reassure children that regular check-ups will help monitor for cancer.
- Carry on as if the cancer never happened – Some children may move on in life as if the cancer never happened.
“Throughout my son Leo’s treatment, it was so hard to plan. We just had to say, ‘Let’s see what tomorrow brings.’ Two years of that. You think it’s never going to end.
It was such a joyful day when the treatment finally finished. I had never allowed myself to look that far ahead. Leo had a ‘no more chemo’ party at school. Leukaemia treatment is so socially isolating, and it was just wonderful to see people embrace the family and to see Leo so engaged with school and friends.
Now that treatment is over, every day matters. It may not be a good day, but all days are important. We’ve all learnt not to write off time – you don’t put things off. It’s a good life lesson.
I’m really proud of all 4 of my children. Despite all the hardship, there has been a lot of growth for them. They are more resilient and have developed strength and compassion. Leo’s siblings pulled him through, and we all pulled through together as a family.”
GENEVIEVE, MOTHER OF FOUR CHILDREN AGED 3, 5, 10 AND 14
Podcast: Explaining Cancer to Kids
Prof Jane Turner AM, International Psycho-Oncology Society President Emeritus,The University of Queensland, QLD; Taylor Baker, Consumer; Dr Ben Britton, Principal Clinical and Health Psychologist, Head of Psychology, Hunter New England Mental Health, NSW; Camp Quality; Dr Lisa Cuddeford, Head of Department, WA Paediatric Palliative Care Service, Perth Children’s Hospital, WA; A/Prof Peter Downie, Head, Paediatric Haematology–Oncology and Director, Children’s Cancer Centre, Monash Children’s Hospital, VIC; Dr Sarah Ellis, Clinical Psychologist, Kids Cancer Centre, Sydney Children’s Hospital, NSW; Malia Emberson-Lafoa’i, Consumer; Kate Fernandez, 13 11 20 Consultant, Cancer Council SA; Jane Gillard, Consumer; Mary McGowan OAM, International Childhood Cancer Advocate, VIC; Annette Polizois, Senior Social Worker, Women, Family and Emergency Care Team, Royal North Shore Hospital, NSW; Rhondda Rytmeister, Clinical Psychologist, HeadWayHealth (formerly Snr Clinical Psychologist, The Cancer Centre for Children, Westmead, NSW); Nadine Street, Head of Social Work and Social Welfare, HNE Mental Health Service, NSW; Warren Summers, Online Counsellor, Canteen, NSW.
We would also like to thank the health professionals, consumers, organisations and editorial teams who have worked on previous editions of this title, and we are grateful to the parents and young people whose real-life stories have added to the richness and relevance of this book.
We thank and acknowledge Dr Paula K. Rauch, MD, Founder and Director, Marjorie E. Korff PACT (Parenting At a Challenging Time) Program and Associate Professor of Psychiatry, Harvard Medical School, whose research and writing on helping parents talk to their children about cancer was used as source material for this book and has been adapted in several sections: pages 8–11, How children understand cancer; page 22, Answering key questions: Are you going to die?; page 26, Involving the school or preschool; pages 30–31, Hospital visits; and pages 36–37, Encouraging family time. We also thank the American Cancer Society for permission to use and adapt material on pages 8-11 from its book Cancer in Our Family: Helping children cope with a parent’s illness (2013); Macmillan Cancer Support for permission to use its book Talking to Children and Teenagers When an Adult Has Cancer (2013) as a source of information; Jessica Watt, Oncology Social Worker, The Children’s Hospital at Westmead, for her contribution on page 20, When another child has cancer; and Diane McGeachy, Hobart Counselling Centre, for contributing material for page 37, Spending one-on-one time.
View the Cancer Council NSW editorial policy.