Dr Rob Jobe is a clinical psychologist at Health in Mind, Birmingham Children’s Hospital. He spoke to parents about some of the emotions they experienced during their child’s cancer journey and offers advice on managing such feelings.
Firstly, I’d like to thank the parents who have shared their experiences and emotions with me – all of which are completely normal to feel – to support other families. The first mother I spoke to said: “At first everything is scary and strange, but you’ll soon learn the jargon, the levels, the protocols, chatting over tea about what anti-sickness is best and what food cupboard to try, whether that be in the parent’s kitchen, by the bed of your child or online, you’ll soon become the ‘mumcologist’.” Another parent described treatment as “like being in a river, up to my neck in the water, occasionally it goes over my head, and I cling to the rocks on the side while the current is pulling at me”.
The experience of a child’s treatment is often moment by moment, “like an emotional rollercoaster with scary stomach-churning moments and then huge highs”, one parent said. Another said: “Your plans can change with the beep of a thermometer.” I also repeatedly heard from families that change will happen and it alters your perspective. All the families recommended “not fighting those changes but accepting them”.
Managing your emotions and support
When I ask parents how they are looking after themselves, typically - and understandably - the answer is: “I am just focused on putting my child first.” Caring for a child with cancer is incredibly draining, but in order to be in the best position to support your child, your own wellbeing needs to be focused on. This might simply start with thinking about small ways to improve your hydration, sleep, diet and fitness, all of which are incredibly important for your emotional wellbeing, while the below advice and resources may also help.
Connect with others
Many families told me that connecting with others going through the same journey can be a real boost. CCLG’s Parents and Carers Facebook group allows families to support and interact with each other, sharing experiences and advice.
Be open and honest with your child about your emotions
I often hear parents say, “I don’t want to worry them” or “I don’t want them to see me upset.” In my experience, children are incredibly perceptive and will pick up on tensions and anxieties in adults anyway. So, without acknowledging this, things can become even scarier for children and can also model them to hide, rather than express, their emotions. Children are likely to be more contained when emotions and feelings are acknowledged. Try this with your child: “I sometimes feel upset and scared and that’s ok.”
Relationships can change
Relationships are placed under huge strain during cancer treatment. In partnership with Macmillan, Relate (www.relate.org.uk) provides free relationship counselling to anyone affected by or living with cancer. Relate can help with issues such as:
- How to express your experience(s) with your friends and family
- How to talk to children, or parents and other relatives about cancer
- Challenges in getting ‘back to normal’ once treatment has ended
Signs you might need more support
Parenting a child through their cancer journey is hugely traumatic and emotional, and we often see huge fluctuations in mood for both children and parents in short spaces of time. If, however, the types of changes listed below persist for several weeks, this might be a sign that you could benefit from additional support:
- You’re feeling sad all the time, crying a lot and can’t be comforted by others
- You can’t concentrate, even without distractions
- You’re less interested and taking less pleasure in things you used to enjoy
- You’re having severe mood swings
- You often feel irritable, upset and angry
- You’re having trouble sleeping
If you have any questions or need further support to help with how you’re feeling, please contact your hospital’s clinical psychology team.
