But for many parents this relief is mixed with other feelings. Parents may now have time to think about the impact on practicalities such as work, their child’s education and finances. Families are often exhausted after months or years of treatment. Parents sometimes feel they swap the worry about side effects for fears about relapse. Parents now have more time to themselves, but that time may become filled with thoughts of what the family has been through and what the future might hold.
Your child’s diagnosis is likely to have been one of the most traumatic things your family has experienced. At the time parents are told the news, many are in a state of shock, and there are often many demands on their thoughts and time. Most parents are also managing other challenges, big and small... “What will I do about work?” “How can I break this news to my child?” “There’s nothing in the fridge”. The list is endless.
During treatment, many parents do not have the time to really think through the diagnosis and the enormity of what it means. It is when treatment slows downthat families can start to take stock of what has happened. For some families this involves going back through all the events around the diagnosis and the difficult times experienced during treatment. This can be a distressing process but for some parents it is a useful way of making sense of what has happened. Counselling or other support is available if parents are struggling to cope.
Parents often find that friends and families are overjoyed that their child has reached the end of treatment. They are greeted with big smiles and told how well their child looks. “Isn’t it great that he’s finished his treatment?” Yet most parents find that their own reactions are much more cautious. Many parents say that they cannot allow themselves to feel joy at having reached the end of treatment, and can sometimes feel more insecure and lost. How can they celebrate when there is a chance, however large or small, of relapse? Or they may have known children who didn’t survive.
For other families a celebration feels very appropriate. Your child and family have just got through the huge challenge of treatment. That in itself is a great achievement. The celebration might be nothing more than going to the park on what would previously have been a clinic day. Some families choose to have a family party or a celebration at school. Others find that planning a holiday or some other enjoyable event gives them something positive to focus on. Whatever you and your child choose will be right, providing it feels right to you.
Parents often tell us that the end of treatment feels like the removal of their child’s safety net. While the treatment is being given, families feel that everything possible is being done to beat the cancer. No-one can tell you that the disease will not return. Parents sometimes feel that they would prefer their child to remain on low dose chemotherapy for life, if it could guarantee that the disease would not return.
It is important to remember that your child’s treatment was carefully designed. Most childhood cancer treatments have, and continue to be, evaluated, changed, and updated. Each change is the result of research that has shown and improvement in cure rates and a reduction in potential side effects. Your child has received a very carefully calculated amount of treatment. There is no evidence that any more treatment will help.
Some parents are able to put thoughts of relapse to the back of their minds. Others find that thoughts of relapse are never far away. If you are struggling with fears about relapse, it can be helpful to remember the following:
- most childhood cancers do not come back
- the chances of relapse get smaller the longer your child has been off treatment.
- if the cancer does return, it may be treated successfully again; many children who relapse are treated successfully a second time around.
During active treatment, families are regularly seeing professionals and other parents at the hospital. Professionals can reassure parents that their experiences are not unusual. Other parents in hospital will have knowledge and experience of how it feels to go through treatment with a child. Yet suddenly, at the end of treatment, fewer hospital visits mean that parents have much less access to these sources of support, often at a time when they really need it.
Parents sometimes find that even people who seemed to have understood what the family was going through during treatment, now become less available and act as if life is now back to normal. It can be particularly hard at this time to find people who realise the pressures and fears that you still feel. With a little explanation, or perhaps by pointing them to this website or our booklet Finishing treatment: a parent's guide, friends and relatives can be helped to appreciate the fact that you still have concerns and what some of these may be.
Coming back to the hospital for check-ups can be stressful. Some parents say that they feel increasingly anxious as the day of the appointment gets closer. Afterwards, many parents feel much more relaxed and are able to forget about the illness for a while. It can help to remind yourself that the chances of a relapse being found at any follow-up appointment are very small, especially if your child is well.
Your child may not understand why they need to come back to hospital. You may not want to risk upsetting them by bringing them back to the hospital, but explaining in a way they can understand is important.
Coming back to the hospital brings other stresses too. It can be hard to see other children who are still receiving treatment. For many parents this brings back difficult memories of their own child’s treatment.
Returning to hospital can also mean that parents hear news of children that they knew during treatment. If the news is bad, it can trigger parents’ own fears about their child relapsingSome parents may also feel guilty that their own child is ok.
Anniversaries of the time of diagnosis or finishing treatment can make whatever emotions you feel more intense, and for many that’s a mixture of sadness and joy. In time many parents find that they can reach a balance between being grateful that their child is free from cancer and the sadness over the inevitable losses that the experience has brought.
Sometimes, once treatment finishes and it is 'all over', the enormity of the whole cancer experience can hit parents hard when they are trying to get things back to normal. Strong feelings can be pushed down during treatment but are then released afterwards or even sometime in the future.
While everyone around them wants to carry on as normal, many parents find that they don’t want to be sociable or talk to anyone as they come to terms with what they have been through as a family.
It is normal to feel emotional at this time but, if your feelings are too overwhelming and you are finding it hard to cope or are experiencing ongoing feelings of anxiety or depression, you may benefit from some further help to talk about how you are feeling.
Don’t feel afraid or embarrassed to go to your GP if anyone in your family is finding things too much. Asking for help can be hard, but it's important to look after your own wellbeing too.
Your child may feel anxious when treatment ends but this depends on your child’s age and stage of development. It is worth remembering any child of any age may regress and act much younger than their age when feeling upset. It can be a difficult time for your child or teen to go back to living a normal life. They will need time to adjust emotionally and physically.
Often during treatment, normal parenting boundaries and discipline are more relaxed for understandable reasons. After treatment, it is normal for the child to feel they are not getting as much attention or consideration now as they did when they were poorly and it can be hard to be out of the ‘spotlight’.
If your child had steroids during treatment, these can affect behaviour whilst they are on them which then becomes a learned pattern of behaviour. It can then be hard to get things back to normal again. The goal is to gradually bring your child back into family life with normal everyday tasks such as chores and homework, give a reasonable level of attention and encourage them to try new things.
As your child grows up they may start to ask more questions about their illness and treatment. Many children will have been too young to remember much about the treatment period. It can then be tempting to try to protect them by not telling them about the details of their illness.
Children are usually more aware than adults realise. Some children will learn about their illness from comments from older siblings, other family members or friends. Finding out about the illness in this way can mean they only have part of the story and this may leave them with worries.
Children may miss the friendships they formed with people in hospital who helped them through this time. Children who have a lot of family support are less likely to have problems adjusting back to everyday life, and this is where parents and other family members can make a difference.
A child’s behaviour can also be a reflection of what is going on in the wider family, and sometimes parents need to talk to someone separately about their own feelings and responses to having gone through treatment, and how it has affected relationships in the family.
Children and teenagers who have dealt with cancer tend to value life and recognise that the challenges they have faced have made them strong. They often come away from a cancer experience with an appreciation of and sensitivity to life that isn’t shared by their peers. They often express feelings of pride and achievement at having faced this crisis and handled it with success.
How you can help:
- make time to talk openly with your child about how they are feeling
- encourage play and art activities as ways to express feelings
- answer questions honestly and openly in a way they can understand to lessen worries and anxieties
- make sure your child understands why follow-up visits are important for their future
- give lots of empathy such as ‘it must feel hard having to do xxx’ to make sure they feel understood and their feelings are acknowledged
- take a structured and consistent approach with parenting and discipline such as clear rules of behaviour, with lots of emphasis and rewards when goals are reached, and paying as little attention as possible to unwanted behaviours
Sometimes, the emotional effects of having gone through the cancer experience can hit later in life even when the child was diagnosed quite young. This is common and many young people have experienced this, particularly at times of stress such as changing schools or exams.
If your child, teen or young adult seems to be struggling and you feel extra support is needed, sometimes a counsellor or psychologist can help them to express feelings they may not want to share with you or cause further worry for you. In a few cases, survivors can experience symptoms of anxiety and depression which can affect their daily life. It is important to address these issues with your family GP so the right help and support can be given quickly.
It is important to be aware of the impact of cancer diagnosis and treatment on brothers and sisters as they will probably be feeling the same fears and concerns that you are which can show through changes in behaviour at home and school.
Brothers and sisters may continue to have worries about their sibling’s health for some time after treatment. They often need reassurance that they are loved equally and that there are no longer any signs of the cancer. As brothers and sisters get older they are likely to need more detailed explanations about the illness, and may also need reassurance that it does not run in families.
Sometimes, siblings can also suffer stress reactions too which they can hide for fear of upsetting parents further. If you feel your other children are struggling, your child’s keyworker, GP or hospital psychologist can help with extra support by arranging appropriate family therapy or counselling for siblings.
Although life may never return to exactly how it was before your child was ill, most parents feel that, in time, the family reaches a ‘new normal’. For children this involves returning to nursery or school and, as much as possible to a full range of leisure activities.
For parents this may be getting back to normal activities, at work or home. For some parents, returning to the workplace can feel like a huge hurdle. If you have not seen colleagues since before your child was ill, coping with their reactions, however kind, can be a challenge. Some parents have found it helpful to visit their workplace or meet up with colleagues before their first official working day.
A ‘new normal’ might involve a return to usual discipline within the family. When a child is ill it is natural that family rules slide. However, insisting on good discipline now sends a very positive message to all children that things are starting to get better. It can be very encouraging to plan a holiday at this stage. If you want to travel abroad, you will need to seek advice about insurance.
Some people find the end of treatment a positive time when they need much less support. But, for others it is very important to have people who understand that, although treatment has stopped, their worries have not. Try to find people who will let you be very open and honest about how you are feeling. Talking or writing your feelings down can help to make your own thoughts clearer. Some parents, however, find that it is helpful to have some time to themselves.
You may find that some of these people can be helpful:
Friends/family members
Whilst your child is on treatment it is sometimes hard to maintain all your friendships. At the end of treatment the friends that have remained will hopefully continue to support you even if it’s just a friendly chat over coffee.
Your child’s health team
The staff you met during treatment will be aware of the difficulties parents and young people face at the end of treatment and will be available for help and advice. A clinical psychologist will be part of your child’s health team so do let them know if you feel you need some extra support at this time.
Cancer support groups
Some treatment centres have parent support groups. These groups will usually be able to put you in touch with other parents who are in a similar position. Where these are not available, there may be more general cancer or carer support groups in your area. Details of these are available from organisations such as Macmillan Cancer Support, local communitiy information websites or libraries.
Online communities
Social media groups and forums can also be a source of help and support by hearing from others who have similar experiences. However, some parents find that the inevitable emotional involvement of hearing other people’s stories might not be helpful, so it is worth thinking carefully before joining an online community.
Your GP and local services
Your GP will be able to give advice on mental health and wellbeing services in your local area and can refer any family members for extra support. You can also pay privately for counselling or psychological therapy.
Charities
Charities such as Maggie’s Centre, Macmillan Cancer Support, Young Lives versus Cancer or your local hospice can also help in arranging therapy sessions for you and/or the whole family.
For information on different types of therapy and help in finding a lcal therapist visit www.nhs.uk/mental-health