A few years ago I wrote an article for the Teenage Cancer Trust on 6 ways friends and family can support a young person with cancer . This article was based on my experiences of about 10 years working with young people living with a cancer diagnosis and other health conditions. Here, I wanted to go over some of these ideas and think about some other considerations. Here is a quick summary of the 6 ideas in the previous article.
1. Acknowledging your own expertise
Although you may want and need to turn to a professional such as a psychologist for help, you will also have knowledge and expertise of the young person and how best they like to be supported. You may want to consider what they have valued in the past when going through a tough time. For instance, are they someone who benefits from distraction or do they prefer to talk about their experiences.
2. Reaching out and staying connected
Cancer can be a very isolating experience. Young people are pulled out of their day to day routine and thrown into a new world of treatment, hospital stays and worry. It can feel like time stays still whilst everyone else is moving on with their school life and friendships. Consequently, staying connected can be a real antidote to feelings of isolation. So one of the simplest things to do is just reach out with a message, a call or a visit.
Sometimes we just want to make it better, to say the right thing or to give advice. There might be space for that at times and some young people will appreciate the support. However, often the most valuable thing we can do is to be present and to listen. We don't know what it's really like for this young person to be going through what they are. It can be so powerful to ask about their experiences and to listen, and this can help form new understandings and deeper connections.
4. Connecting with identity
Cancer can feel like it consumes someone's identity and everything else that is important to that young person takes a back seat. As friends and family it can be really helpful to connect a young person with aspects of their identity that are important to them. Whether this is music, sport, art, helping others or something else. If we can support a young person to reconnect with preferred aspects of themselves, this be so important in alleviating low mood and hopelessness.
5. To talk or not to talk
A well-known psychologist once said, “don’t take away someone’s coping strategy if you don’t have anything better to replace it with”. In these situations, it’s so important for the young person to be able to take the lead on how they respond and cope. This can be hard for parents or carers who see the young person struggling and desperately want them to talk about their difficulties. However, for some young people, just getting through the experience without thinking too much about it is what they need to do. As mentioned above, here it can be important to stay present, listen and help a young person stay connected to what’s important to them.
6. Looking after yourself
As a friend or family member you might feel guilty thinking about your own needs or feel that you do not have the time or headspace to look after yourself. This is entirely understandable if you feel like this. However, In order to have the capacity to look after another person, it can be important to also consider what you need to be able to cope and manage. This might mean having someone who can give you a practical break, or someone who can lend a listening ear. Staying connected to something that helps you feel more balanced can also be important.
There were 6 ideas I wrote about a few years ago and I think are still valid today. However, I wanted to add to this list with a few more ideas and considerations.
7. The dilemma of talking about death
One of the big dilemmas in this work is knowing if, how and when to talk about death. For many young people they will have a good prognosis and the team are treating with a curative intent. However, despite this even the word cancer can lead to a mind spiralling to the worst case scenario despite a good prognosis. Often this is not discussed because understandably the team and family are remaining positive and hopeful about treatment. However, these niggling worries, thoughts and what if's can linger for a young person and remain hidden from others when a more hopeful narrative is the dominant one. In situations where the prognosis is more uncertain the concern might be that talking about death might lead to a young person becoming overwhelmed with hopelessness. There is no right answer in these situations and it is a dilemma. Whilst some young people find talking about such worries relieving and reassuring others can find it uncomfortable and distressing. It is important to consider what approach you feel the young person might benefit from as well as how and when to approach the topic.
Young people may be looking for support at the point of a transition. This might be at a point of change in treatment, the end of treatment, relapse or when moving from more active surveillance to long term follow up. These points of change might be a time to be aware that a young person might need something more or different. For instance at the end of treatment this might be a time of relief but also a time of anxiety about going back to school or work and having to engage with people again, respond to questions and find a new routine. At these points it might be helpful to acknowledge the change, ask a young person how they are doing and what they might be needing.
9. Trauma and growth
I have been involved in research looking into the experiences of teenagers going through cancer treatment. Indeed for many this time is highlighted as painful, difficult and traumatic. Indeed, as a psychologist trained in trauma approaches such as EMDR, I have often been involved in working alongside young people with significant PTSD and traumatic memories. However, alongside the difficulty many describe their cancer journey as a growth experience. I have heard young people talk about how it changed their perspective on life, their values and resulted in them forging new interests and paths. It can be important when talking to young people after their cancer experiences that we hold on to these dual narratives and reflect on which one weight be privileging.
So, these are a few thoughts on supporting young people who are going through a cancer journey.