In Charity News, Patient & Carer Events, Uncategorized

When you’re living with a brain tumour, the smallest of tasks can seem mountainous. Here Jane, our Support Specialist for London and the South East, recounts a recent trip to the shops with one of the people she supports. At brainstrust we know that it is this kind of support that can mean the most.

When the going gets tough, the tough go shopping…

Our Kent Meetup takes place at a restaurant in Bluewater shopping centre. We chose this venue because of the good public transport links and ease of parking, but what we hadn’t initially considered was just how convenient it would turn out to be, having the shops close by.

Photo by Anna Dziubinska on Unsplash

I had arranged to take Becky* to the Meetup as she is no longer able to drive, something that is unfortunately very common for people living with a brain tumour diagnosis, and she lives too far away for public transport to be a feasible option for her. On speaking to Becky ahead of the Meetup, she mentioned that she needed to get to the shops to buy a present for her dad, so we arranged to leave early so that we could spend a couple of hours looking round the shops before we met the rest of the Meetup group.

Becky and I had a lovely time at the shops – it was good for her to just be on a girlie shopping trip and to do ‘normal’ again, without considering her brain tumour diagnosis.

Whereas our conversations usually focus on aspects of living with a brain tumour and the limitations and frustrations that brings, during our shopping time Becky could be Becky again – she was the person, not the patient. She was also able to feel more in control and on top of things, as she achieved the important task of purchasing a gift for a loved one.

Your “new normal”

When you hear the words “you have a brain tumour”, there are a lot of things that you know will never be the same again. The upheaval of treatment and its subsequent physical and psychological effects, the difficult conversations with friends and family and bring forced to confront your own mortality – these are the very real issues that our community face. They are the obvious issues.

However, once treatment is over and it becomes possible to begin to settle into a “new normal”, people often assume that life will return to how it was before, and for many people, happily this will be the case. However, for many others this is where the real struggle begins. The difficulty of achieving something as simple as visiting the shops isn’t something that people necessarily consider could become a problem, but for many people living with a brain tumour, this is often the case.

Many things contribute towards making an ordinary thing like a trip to the shops really challenging. These vary from person to person, but can include losing your driving license, experiencing sensory overload, the unpredictability of seizures, difficulty communicating, memory problems meaning that getting lost is a very real concern, and physical disability.

So, what are the things that you can do to make a trip to the shops feel more manageable?

  • Pick a quiet time – avoiding lunchtimes and Saturdays can be a good idea
  • Consider wearing a baseball type cap to minimise glare from fluorescent lights overhead or ear defenders to minimise background noise, if you struggle with these things
  • Many stores now offer designated quieter hours to support their customers with sensory issues. These hours will typically have quieter music and fewer bright lights to help reduce the sensory overload. If you have a favourite store that you like to visit, why not make contact with them to see if they offer this service?
  • Ask a friend to go with you. Often our friends and family want to support us but simply don’t know what they should be offering to do. A trip to the shops could be the perfect way to catch up with someone, and your friend might be grateful for the tangible opportunity to support you

And if you’re reading this as the friend or supporter of someone living with a brain tumour – what can you do?

  • Recognise that they might not be the same person that they were before. Even though treatment has finished and they look the same as they did before, they may be struggling with ‘ordinary’ things
  • Offer to help. Take them shopping!
  • Drop an email to hello@brainstrust.org.uk and request our free guide ‘Walking a mile in our shoes: Tips from a brain tumour patient’s carer’. It’s packed full of tips and we’ll post it to you for free.