For many people, the end of 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".
"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 four 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
What do children need to know?
Children and young people may need to know that cancer is 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 reflect on what's happened and re-evaluate their life. This process is commonly called finding a new normal, and it may take months or years. The person who has completed cancer treatment may:
This period can be unsettling and lead to big changes, such as making lifestyle or dietary adjustments, choosing a new career or reassessing relationships.
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 cancer survivors and can interfere with daily activities. Many people have to deal with temporary or permanent side effects, such as physical scars, early menopause, or fertility and sexuality problems.
Worry about recurrence
One of the major fears for survivors is that the cancer might come back. This is an understandable fear, which can be triggered by regular check-ups and even minor aches and pains.
See Living Well After Cancer, or call Cancer Council 13 11 20.
How children react
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 loved one 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.
Separation anxiety that started during treatment may continue well after treatment is over.
Worry the cancer will return
Like the person with cancer, recurrence is a big fear for children and young people. You may need to reassure your children that regular check-ups will help monitor the cancer.
Family life after treatment
Celebrate the end of cancer treatment, and acknowledge that it has been a difficult period for everyone; this is particularly important for teenagers. Encourage kids to have fun. They have lived with worry for months and may need your permission to relax again.
Let the family know how you're feeling emotionally and physically so they understand if you're not bouncing back as quickly as they expected. It may be helpful to let the family know that treatment effects are likely to last for a while after treatment finishes. Keep using the emotions thermometer if you have one. Be open about your fears, such as if you're feeling anxious before a check-up. This may encourage your kids to talk about their own fears.
Do things at your own pace, and avoid any pressure to return to "normal" activities. You may want to ask yourself: Am I doing what fulfils me? Am I doing what I want to do? What is important to me? Explain any changes to the family's lifestyle and negotiate where possible. During your recovery, you may be able to incorporate healthy lifestyle changes into family life or activities – for example, you could do light exercise together, or make healthy changes to the kids' diets as well as your own.
Focus on each day, and expect good days and bad days – for both the adults and the children in the family.
If you are a parent who has finished cancer treatment, you may want to focus your attention on your children, but it is important to look after your own wellbeing. These strategies can help.
- Consider joining a support group. Many cancer survivors join a group to meet people who understand what they have been through and how they're feeling. Talking with other survivors can help you cope and will therefore benefit your kids.
- Read cancer survivors' stories. Learning how other people have made meaning of a cancer diagnosis may help.
- Take part in a survivors' event or attend a survivorship program, such as a Cancer Wellness Program, if there is one in your area. To find out what is available, contact Cancer Council 13 11 20.
- Find out about Cancer Council's Cancer Connect program by calling 13 11 20. They may be able to put you in touch with someone else who has had cancer treatment.
Answering key questions
Q: Will the cancer come back?
You probably wish you could tell your children that everything will be fine now, but the uncertainty of cancer lasts long after treatment is over. As well as giving a positive message, this may be a chance to listen to your child's concerns about "What if?" Allowing a child to talk about their fears and concerns is important in helping them cope.
A: "The treatment is over and we all hope that will be the end of it. We hope that the cancer won't come back, but the doctors will keep a careful eye on the cancer with check-ups every now and then. If the cancer does come back, I will have some more treatment, which we hope would make it go away again. We'll let you know if that happens."
Q: Why are you still tired?
Cancer survivors often feel tired for many months after treatment. This can be hard for kids who want their energetic parent, grandparent or friend back.
A: "I'm feeling a lot better, but the doctor said it might take many months, even a year, to get all my energy back."
"The treatment was worth it because now I'm better and the cancer has gone away, but it took a lot out of me and now my body needs time to recover. This is normal for people in my situation."
Q: Can't we get back to normal now?
The person with cancer may need to take some time to process the ways that cancer has affected them, but this will probably be difficult for children, particularly younger ones, to understand. It may be helpful to explain that not everything will be the same as it was before, but that doesn't have to be a bad thing. The new normal could actually offer some benefits. Many people who've had cancer can see positive outcomes from the experience, and it may help to highlight these to the kids.
A: "Day-to-day life will start to get more like normal as I feel better, but there may be some changes to the way we do things, like ... [the way we eat/how much I go to work/how much time we spend together as a family]. Maybe we can also find some new hobbies to do together."
"We've all been through a lot and I know it's been hard for you too. Things might not get back to exactly how they were before I got sick, but together we can find a new way that works for all of us."
- People who have had cancer treatment often have mixed emotions.
- It may be difficult to settle back into how life was before cancer.
- Kids and young people might continue to have their own fears and worries about the cancer.
- Children may find it hard to understand why life can't go back to normal. It could help to explain that the family will have a new normal.
- Give your children permission to have fun and to re-establish their own new normal along with you.
- Keep communicating and sharing your feelings with each other.
Expert content reviewers:
Professor Kate White, Chair of Nursing, The University of Sydney, NSW; Sarah Ellis, Psychologist, Behavioural Sciences Unit, Kids with Cancer Foundation, Sydney Children's Hospital, NSW; Kate Fernandez, 13 11 20 Consultant, Cancer Council SA; Chandra Franken, Program Manager - NSW & ACT, Starlight Children's Foundation, NSW; John Friedsam, General Manager of Divisions, CanTeen, NSW; Keely Gordon-King, Cancer Counselling Psychologist, Cancer Council Queensland; Stephanie Konings, Research Officer, CanTeen, NSW; Sally and Rosie Morgan, Consumers; Dr Pandora Patterson, General Manager, Research and Youth Cancer Services, Canteen, and Adjunct Associate Professor, Cancer Nursing Research Unit, The University of Sydney, NSW and Visiting Professor, Faculty of Health and Life Sciences, Coventry University, UK; Suzanne Rumi, Consumer; Michael Sieders, Primary School Program Manager, Camp Quality.