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1 in 5 people we spoke to experienced communication difficulties caused by a brain tumour diagnosis.
It's important to remember that not everybody who is affected by a brain tumour will experience communication difficulties.
For those that do, the symptoms and severity can differ from person to person, so you may not have the same problems as someone with a similar diagnosis and treatment plan.
There is a range of different communication difficulties that you may experience:
Use BRIAN’s quality-of-life tracker to record when and how severely you have problems with comminication. Then share this with your healthcare team to get the support you need.
BRIAN is our trusted online app where you can track your experience, compare it with others who’ve been there and get the knowledge you need to make informed decisions.
Whether and how a brain tumour affects your communication skills will depend largely on where it is in the brain. Each section or lobe of the brain is responsible for different functions, some of which are involved in communication.
For example, the frontal lobe is involved in language production and the temporal lobe is involved in understanding language. As a result, if your tumour is in one of these lobes, pressure from the tumour itself, swelling around it or treatment directed at that area may have an effect on your communication skills.
The brain is also divided into two hemispheres - left and right. The side on which your tumour is located, as well as the lobe, can affect the type and likelihood of communication effects. If your tumour is located in the left hemisphere, you are more likely to experience language and speech difficulties, as this is where the language areas are generally found. (It is important to note that for some people, the language areas are found in the right hemisphere.)
Brain tumour surgery can also cause communication difficulties, if the area of the brain operated on is involved in communication. These effects may be temporary and reduce with recover, but some effects may be more permanent if that area is removed or damaged.
"After surgery to debulk my brain tumour, I was told I had dysphasia (partial loss of my ability to speak and write), caused by the tumour and the surgery. I couldn’t remember words and often wrote gibberish. I had speech therapy and did improve, but it’s an ongoing effort to keep it at a good level.
"When your communication is affected, it can cause awkwardness and misunderstandings. I’ve learnt it helps to support the people you’re talking to. I pushed myself to keep speaking to people, and, if I got something wrong, I’d ask for help,
"I didn’t feel embarrassed because I started with friends first. This gave me confidence to speak to people when I went into town. And now I’ve also done speeches. If I forget a word, I ask the group to help and make it into a fun game.
"The most important thing I’ve learnt is to keep looking forward. Things might not go back to how they were, but the one thing you can do is crack on and be positive."
Join one of our Online Support Communities for more stories and tips about coping with a brain tumour diagnosis from people who know what you're going through.
The ability to communicate is something we often take for granted. When communication difficulties occur, they can make us feel frustrated, angry, embarrassed and isolated.
But, it's important to remember that communication is a two-way process. As well as strategies that make communication easier if you're living with a brain tumour, there are ways for family and friends to listen better and speak more clearly.
We've spoken to people affected by brain tumours and healthcare professionals to collect tips that make it easier to cope with communication communication dfficulties.
Difficulties communicating can place a huge amount of stress on even the healthiest relationship. In our Losing Myself report, 2 in 3 people said a brain tumour diagnosis had a negative impact on their relationship with their partner.
By launching our free counselling service in partnership with Relate, we hope to support couples as they manage the extra strain on a relationship that can be caused by a brain tumour diagnosis.
"Asking my partner to describe things to me helps when they're having difficulty finding their words."
"At the start you think you'll never get back to normal, but it seems to happen without you even noticing - patience is key! I'm now very honest with people if I'm struggling with my communication and reassure them that I'm not thick, I'm just a brain tumour survivor!"
"I always remind my partner that what they're trying to say is important, not how they say it. I encourage them to use gestures, do a drawing or write it out, rather than stressing too much about forgetting words."
"I struggle to follow conversations when more than one person is talking at the same time. I warn people about this now because it can seem like I'm not interested in the conversation."
Join one of our our Online Support Communities for more tips about coping with a brain tumour diagnosis, from people who truly understand what you're going through.
If you're finding communication more difficult because of a brain tumour diagnosis, you may find our factsheet about cognitive difficulties helpful.
Our coping with cognitive difficulties factsheet is packed full of tips to lessen the impact of any cognitive effects caused by a brain tumour.
If your communication difficulties are caused by issues around speech and language, you may find this factsheet helpful.
Discover a wide range of tips and advice on how to cope when you're experiencing speech and language difficulties.
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