Increase your hours slowly
“Our daughter, Jade, was 17 when diagnosed and treated with radiotherapy for germinoma tumours. She started work as a freelance horse groom five months after treatment and was lucky to be able to build up from a few hours three times a week to three full days.
18 months on she’s taken on a second job, taking her up to full-time, but her days off are split, allowing her to rest on two single days a week and she’s really thrived.”
Sarah
Talk to teachers
“Communicate with your teachers as much as you can. The more they know about your situation, the more they can help.”
Molly
Tackle struggles head-on
“Be open and upfront about any difficulties you’re having post-treatment, so provisions can be put in place to try to prevent those affecting your return to school or university.
If you find yourself struggling, talk to somebody – your teacher/lecturer, disability services, anyone. It’s easier to deal with struggles sooner rather than later, and tackle them head on.”
Danni
Use our Employment Adjustments resource
“The Brain Tumour Charity’s Employment Adjustments resource is especially useful to know where to begin conversations with your employer and to give ideas on what you should be asking for once you feel you’re in a position to return to a role.
This can mean more flexibility from your workplace to take into account that you might have to take it easy at times, which in my opinion is wholly understandable considering the circumstances!”
Michaela
Have some downtime and relax
“I’ve been back at work over a year now. Pacing myself really helped by using a WobL watch (a small reminder wristwatch sometimes used for potty training). You can set it to vibrate at different intervals to remind you to take time out.
I used to get very tired after concentrating so I’d get away from my desk and do five minutes of belly breathing. It’s really relaxing and helps you to re-energise. Getting this flagged up in an occupational health report also helps.”
Helen
“At school make sure they allow you some free periods so you don’t get too tired during the week. I have two and it helps me manage. It did mean I had to drop a subject but that’s not the end of the world.”
James
Get organised
“Get a planner and write down everything – lectures, events, meals, shopping, etc. It’s an easy way to stay on track, manage memory loss and reduce stress.”
Lily
Minimise background noise
“On returning to work after surgery – and a lot of time off – my husband said his noise-cancelling headphones allowed him to focus without being exhausted by the background noise of a big office.”
Lisa
Get support
“University students can seek help and guidance from their student services team who are able to put in place extenuating circumstances for your studies, for example extra time during exams or greater leniency when marking your work.”
Sabrina
“Don’t be scared to ask for help. Most universities offer free counselling services and these can be amazing for someone to chat to, or even just a contact to help fight your corner for essay extensions etc.”
Becca
Don’t compare yourself to others
“Don’t compare yourself to other people. You go through a lot when you have a brain tumour and just because you feel like you’re working slower than someone else doesn’t mean your input is any less valuable.”
Katie
Advice from Charlotte Robinson (Clinical Nurse Specialist)
“If you’re able and ready to return to work or school, it’s important to phase yourself back in and talk about any additional support you might need. Having a meeting with your line manager or teacher and putting a plan in place for a phased return with very reduced hours is important. You can then build these hours up as your strength and fatigue levels adjust to the point you can return fully.
It’s also important to continue socialising with your friends and family, as feeling isolated and alone can have a negative effect on your mental health.
The Brain Tumour Charity has Facebook groups for those affected, so you can talk to others who understand.
They also have meet-ups for those aged 16-30 affected by a brain tumour, where you can meet people your age going through a similar situation. These can be a great source of support, allowing you to bond with others who understand; no explanations needed.”
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