Tuesday 18th August 2020

Teenage Cancer Trust Youth Support Coordinator Lois

Youth Support Coordinator, Lois

Young people with cancer are ‘veteran shielders’

"People on chemo will normally need to isolate and shield, and a lot of the young people I’ve been supporting had already adapted to isolation before lockdown. I’ve had young people tell me their friends have been asking them for advice!

"A lot of young people said they felt more part of their friendship group and their community during lockdown, because everyone was in the same boat. Or their friends had more empathy for what they’d been through: 'I’m sorry I kept sending you pictures of my nights out!'

"For young people who maybe have social anxiety or have a compromised immune system, they were less worried because there was no pressure to go out – they had a valid reason to say no because of shielding. It’s nice having the excuse not to do stuff and it’s not just because of cancer.

"A lot of the time, what young people are worried about is missing out on school, or peer achievements like graduation, going travelling, getting married – they lost that fear of missing out because everyone was missing out. The FOMO isn’t the same anymore."

The hardest times made even harder

"On the negative side, at a time when young people really need peer-to-peer contact and support, we just can’t do that in the same way. Where young people are isolated at home with parents, they’re obviously kept away from their other friends and social groups. They might have a boyfriend or girlfriend that they’re not old enough to live together with, or they can’t see grandparents.

"And death is really hard at the minute. Funerals aren’t the same, grief isn’t the same. I recently supported a young person who was having end of life care. I FaceTimed them because I couldn’t see them in person, and they were crying, saying 'I just wanted a big funeral and I won’t be able to have one – I wanted you guys there, I wanted the nurses there, and all my friends'. That was heart-breaking to be honest.

"And not having the same number of people able to visit you if you’re on end of life care. The families have got less social support too, they can’t have friends or neighbours popping over. And a lot of ‘bucket list’ activities like holidays or trips to Disneyland aren’t possible so it’s harder to help a young person enjoy the last few months of their life to the full."

Virtual support and the power of emojis

"Before lockdown I used to do two activities a month, one off the ward and one on the ward. I’ve tried to continue that online so there’s not been a drop in service. That’s in addition to one-to-one support over FaceTime, Facebook messenger, playing games online, and connecting young people with each other.

"Every couple of weeks I’ll send out a message asking young people to send back a heart emoji, with different colours depending on how you’re feeling. Red means 'I’m not good, call me', green is 'I’m doing amazing!', and everything in between.

"A lot of Youth Support Coordinators have found this useful – it’s a way of checking in without the young people having to use words or ask for your help. Normally you could just look at someone and realise 'you’re not ok' and go over and sit with them for a bit.

"My virtual events have different people on them than my normal events. Maybe the normal events like escape rooms and meals out with loads of people aren’t as accessible for everyone – so there’s loads to be said for continuing the virtual stuff even when we’re back to normal.

"Young people with cancer have to be resilient – they’ve already been through something so tough already."