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An unexpected journey

Our Director of Services and Influencing, Emma Tingley, shares her thoughts on navigating the system after a brain tumour diagnosis, and our recently launched Patient Guide.

I recently took a family trip to Holland. Although we had a really fantastic time, I was very aware that I was fairly on edge pretty much all the time.

Don’t get me wrong, I did relax when we were together as a family, but it was a new area for us and we found that not many of the locals that we met spoke English and my Dutch is limited to just 2 phrases!

For a confident person, I felt surprisingly anxious and vulnerable in an environment where I didn’t speak or understand the language.

I’ve not walked in their shoes so I can really only just begin to imagine what it must be like for someone diagnosed with a brain tumour.

Suddenly being plunged into a whole new place, perhaps feeling like you’ve arrived somewhere where no one speaks your language and the words being spoken to you are so alien. Left feeling as though your whole world has been turned upside down.

But tomorrow comes and very gradually, over time, you begin to start making some sense of those words, and maybe even the place that you’re in.

You only have to walk into any bookshop, or surf the net, to find a myriad of guidebooks for every possible place you could visit. It’s quite normal to buy a book and be guided through the unfamiliar streets of a new city, find out about the best places to eat, and even get ahead by learning some frequently used phrases.

Our recently launched Patient Guide is just that – a travel guide to help those diagnosed with a brain tumour who find themselves in a place that they never expected to be.

Developed in partnership with people who’ve already trodden that path or worked in the system, its intention is to support those newly diagnosed to navigate their way. We want it to be the first point of reference for anyone who has arrived in this unfamiliar and often frightening place.

And with the addition of TripAdvisor to give us real-life insight into what to expect and the pitfalls to avoid when travelling, our community are encouraged to do the same.

Sharing experiences not only helps people to feel less isolated and alone, but it’s an opportunity to learn from others’ experiences. Our Facebook groups and page do just that. They provide a safe space for sharing.

There’s no judgement, just a group of people with a shared experience. A place where partners can seek support, where parents can find comfort and where those affected can find hope. It’s not the place that you were expecting to be, but it’s a place where, in time, you can find a new normal.

It also gives us, as a patient advocacy organisation, insight in to where services are working well and conversely, where improvements are needed. It’s our job to speak out against inequality and to be instruments of change.

Our vision is a world where brain tumours are defeated, but until we’ve put ourselves out of business, then we are here. To support, to guide and to act.