Is it normal to have mixed emotions?
Most parents whose child is approaching the end of treatment feel relieved that the treatment has worked, and that it no longer needs to play a big part in the life of their family. Families can stop planning around treatment and start to look forward.
But for many parents this relief is mixed with other feelings. Parents may also have time to think about the impact on practicalities such as work, 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. At last parents have time to themselves, but that time may become filled with thoughts of what the family has been through and what the future might hold.
Why am I thinking about the past/diagnosis?
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 diagnosis, many are in a state of shock, and there are often very 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 down, that 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 may be available if parents are struggling to cope.
Why don’t I feel like celebrating?
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 chemo?” 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. 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. The section below talks about coping with these fears.
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.
Dealing with fears of the cancer coming back
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 very carefully designed. Most childhood cancer treatments have been changed regularly over the last 30 years. Each change is the result of research that has shown how cure rates could be improved or side effects reduced. 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 never recur.
- 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.
Where did everybody go?
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 are in the unique position of knowing 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 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 lending them this booklet, friends and relatives can be helped to appreciate the fact that you still have concerns and what some of these may be.
Sources of support
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 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:
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.
Professionals from your treatment centre
The staff you met during treatment will be aware of the difficulties parents and young people face at the end of treatment. Do let them know if you feel you need some extra support at this time.
Support groups and counsellors
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.
The organisations listed at the back of this booklet will also be able to guide you to what counselling services are available in your area. Your GP may also be able to provide support and advice.
Coping with coming back to the hospital
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. Similarly, many parents feel much more relaxed afterwards 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. 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 relapsing.
Some parents may also feel guilty that their own child is ok. It is always important to remember that even when children have the same diagnosis, each child’s illness is unique. Do ask to speak to someone about your concerns if you feel this would be helpful.
Coping with special occasions
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.
Talking to your child about the illness
As your child grows up the amount of information they need about their illness and its treatment increases. 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. Many children will learn about their illness from comments from older siblings, cousins 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.
By talking openly to your child you are inviting them to share their thoughts about the illness openly too. This will give you a chance to correct any misunderstandings and give them reassurance.
It is also important that your child knows about their illness so that they understand why they still need to come to clinic for appointments even when they are well.
Brothers and sisters
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.
Finding a ‘new normal’
Although life will 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, be that at work or home. For some parents, returning to work 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 work place 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 better now. 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.