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“It changes everything” – the impact of living with a lower-grade glioma

Living with a lower-grade glioma has a profound impact on those diagnosed, and their families. This is well documented anecdotally but needs to be scientifically addressed so that everyone affected by a brain tumour diagnosis gets the help and support they need.

Two people holding hands

The Ways Ahead project – funded by us – focusses on understanding the impacts of a lower-grade glioma diagnosis. The project aims to address the gaps in care to improve people’s quality of life.

Research by the team at the University of Newcastle identified key themes linked to how people experience life with their diagnosis, how this impacts close friends and family, and how they can all be better supported.

Research published last month focussed on the quality of life of people living with a lower-grade glioma. People were interviewed to gain an understanding of how living with a brain tumour has impacted all aspects of their lives. Some of the key themes are highlighted below.

Emotional responses to diagnosis

I’m a very, very positive person and with the first lot [of treatment], when I came around a bit and I was remembering things I wallowed for a while.

Many of those interviewed highlighted the emotional impact their diagnosis had on their lives. They expressed feelings of shock, anxiety, low mood and depression. They also experienced difficulties with accepting the impact their diagnosis had and the uncertainty they had for the future.

Living with ‘what ifs’

I was really afraid when in March, I booked a holiday for next August. I kept thinking, “Oh my God, will I get there?” I have to have blind faith that I’ll be okay. So it changes everything. You have to learn to live with the changes, go with the flow.

The impact of a brain tumour diagnosis worried many of the people interviewed. For example, the possibility of the tumour progressing, cognitive changes, fatigue, and seizures.

This led to lots of ‘What if’ questions: “What if I have a seizure?”, “What if I forget?”, “What if my tumour progresses?”

Changing relationships

I get on with things much as I used to really but emotionally, I’ve been flattened a bit by it all and I think that probably has had an impact on my family because I don’t think I’m a lot of fun sometimes.

All those interviewed spoke emotively about how their diagnosis had impacted relationships with family and friends. Accepting more help and acknowledging the impact that a brain tumour diagnosis has on wider family members, especially children was particularly difficult. Most people also talked about how the impact created challenges for maintaining their social life, and how this could lead to feelings of loneliness.

Faltering independence

The rehabilitation can be soul destroying and you’re trying to get your life back and your personality back and everything is just so difficult and tiring.

It was widely recognised that a brain tumour diagnosis has a profound impact on the independence of those diagnosed. Recovering after surgery and challenges with fatigue were widely acknowledge by those interviewed. They highlighted that day-to-day activities such as housework and exercise were impacted.

One of the biggest losses is the loss of a driving licence, as it has a profound impact on independence and increases the need to rely on others.

What support is out there currently?

At The Brain Tumour Charity, we know that a brain tumour diagnosis impacts so many aspects of life, and we offer support for those affected. But we also know more needs doing which is why we fund research like this.

What support do we hope will come in the future?

Funding of research such as this is so important so that we can find the gaps in care and explore ways to improve them. The Ways Ahead project is aiming to understand how much people and their families go through while living with a brain tumour diagnosis and hopes to outline pathways to better care and support for those affected by this devastating disease.

Find out more about this research below.

Professor Linda Sharp