Dr Amandeep Samrai, Consultant Clinical Psychologist in Paediatric Oncology at Nottingham Children’s Hospital, writes on the impact that a childhood cancer diagnosis can have on emotional health and wellbeing. She offers tips on self-care and coping strategies, and explains where to access support.
Receiving a cancer diagnosis and being treated for cancer as a child or young person can be scary and traumatic. Parents and caregivers can understandably feel overwhelmed and worried, and it’s normal to feel shocked when first given the news. Treatment usually begins quickly, and there’s little time for adjustment. Young people and their families can find themselves going from ‘normal’ everyday life to being given a treatment schedule and starting the treatment process almost immediately. It can feel daunting to be told about chemotherapy cycles, radiotherapy and surgery.
"We tend to feel more comfortable when we’re able to plan and know what’s coming next, which is why living with uncertainty can be so difficult.
After a few months, life can settle into a rhythm of blood tests, scans, treatment, going to appointments and staying in hospital. This is sometimes referred to as the ‘treadmill of treatment’. There’s no ‘right’ way to feel during this process. Sometimes, it can feel routine and mundane, but if there’s a change in the schedule or some unexpected news, it’s normal to feel a rollercoaster of emotions. There can be emotional peaks and troughs, which can be difficult when having been used to life being more settled.
Although most children, young people and families adjust to and manage the diagnosis and treatment of cancer, understandably some can experience longer-term emotional difficulties.
Living with uncertainty
A cancer diagnosis is life changing, and both during and after treatment there will remain some element of uncertainty. This can make it hard to think about what the future holds. We tend to feel more comfortable when we’re able to plan and know what’s coming next, which is why living with uncertainty can be so difficult. After treatment has ended, it is normal for feelings of uncertainty to remain. Although there are fewer hospital appointments to attend, many young people still require blood tests and scans. Sadly, relapse can also be a reality. Going for and waiting for the results of scans can be nerve-wracking and lead to ‘scanxiety’.
As the time between follow-up appointments and scans becomes longer, you may find you adjust to living with uncertainty. However, the time it can take to adjust can vary hugely, so it’s important not to put too much pressure on yourself and allow yourself the time you need.
Adjustment after treatment has finished
Young people and parents often focus on the end of treatment and going back to ‘normal’. Although a cancer diagnosis and treatment is very difficult and challenging, the structure of treatment, hospital appointments and support from the team can provide reassurance.
Initially after treatment has finished, young people and parents may feel happy and relieved. However, ongoing hospital appointments, blood tests and scans are often required, and this can feel like treatment hasn’t really finished at all. As a consequence, the end of treatment can feel like an anticlimax.
Overall, it can be a challenging transition, and it can be frustrating when it feels like things aren’t ‘back to normal’. Milestones such as having a line or nasogastric tube removed can help the adjustment process and make it feel more real. The emotional experience of the cancer diagnosis can also be something that young people and parents think about more after treatment. There is time to think and reflect on what you’ve been through and the impact it has had on the whole family.
"As life changes, such as a child going back to school, or parents going back to work, new routines begin and it may become feasible to do activities that might not have been possible during treatment.
t’s very common for it to take time to adjust to life after treatment, and this varies for each person and family. As life changes, such as a child going back to school, or parents going back to work, new routines begin and it may become feasible to do activities that might not have been possible during treatment. This process may help with the adjustment and some of the uncertainties of life after treatment. You may find that life doesn’t go back to the way it was before the diagnosis, but a ‘new’ and different normal.
How to access support
Undergoing or completing cancer treatment is a difficult time that brings up complex emotions. There are several ways to access emotional and psychological support for children, young people and families during and after cancer treatment.
In some principal treatment centres, there are clinical psychologists who work in the paediatric oncology teams. You can usually be referred by your hospital consultant, clinical nurse specialist or another member of the team for an assessment. In some hospitals, clinical psychologists work in paediatric psychology departments, and a referral can be made by your hospital consultant. Other members of the paediatric oncology team, such as Young Lives vs Cancer social workers, clinical nurse specialists and play therapists, can also offer support.
Alternatively, seek advice from your GP, and they can refer a child or young person to CAMHS (Child and Adolescent Mental Health Service) or a local adult talking therapies service. Your GP can also prescribe medication, such as anti-depressants for young adults and parents, if appropriate.
Coping strategies and self-care
There is no ‘normal’ way to cope with a cancer diagnosis or treatment, and it’s important to allow yourself to feel sadness, worry and anger. There may be times when simply crying and voicing the unfairness of the diagnosis is what you need to do.
It can be challenging to prioritise emotional health and wellbeing during the physical and practical process of treatment. Self-care, which includes eating well, trying to exercise and getting rest, can be difficult when staying in hospital. When you have periods at home, it may help to focus on one of these things, but also to not be too hard on yourself if this isn’t a priority. If it’s possible to share overnight stays in hospital, take a break and allow yourself to spend the night at home and get some rest.
There are coping strategies that can help and it’s important to find out what you find helpful, as this will vary from person to person. Some people find relaxation, drawing and colouring, mindfulness, and breathing exercises helpful. There are also a number of relaxation apps that might be useful to aid self-care.
Others might find reading, audio books and listening to podcasts beneficial. Writing down how you feel, keeping a journal, taking notes on your phone, or making voice notes about your experience are some alternative coping mechanisms.
It’s important to spend time with people you care about, and this can include seeing family or friends. Having connections with other families and young people who you may have met in hospital may also help, in order to share the experiences and difficulties of treatment with people who understand.
Useful links and apps
Hospichill (for children and young people) - Relaxation skills for hospital visits
Insight Timer - Guided meditations for help with sleep, anxiety and stress
Headspace -Science-backed meditation and mindfulness tools
From Contact magazine issue 95 - Summer 2022
