Your story - Facing the impact of a brain tumour

The experience of you, or someone close to you, going through brain tumour diagnosis and treatment can be confusing, terrifying and very isolating.

No two journeys through this are exactly the same, but the sharing of those experiences, the good and the bad, the triumphs and the set-backs, the worries and emotions which arise, can be hugely beneficial.

On this page we bring together some of those stories and included are also some diaries and blogs which are not always just about medical matters, but sometimes express wider feelings, ideas, creativity and reflections on life.

If you have a story yourself which you’d like to share, please tell us about it here.

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Jane's Story - 

You've given me my life back

Please help us to be here for more people like Jane

Recently added stories

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Sue

Diagnosed in 2019 with acoustic neuroma

Sue experienced worrying symptoms for a number of years before the cause was diagnosed.  Following surgery in 2020 she is continuing to recover but still feels the lasting physical and emotional impact of all she has been through.

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Dan

Diagnosed in 2011 with ependymoma, recurring 2014/2018

Dan was aged just 20 when he was first diagnosed with a brain tumour. It was a diagnosis which had been missed by GPs and came about as a result of a chance eye test.
Ten years on, Dan and his wife Sonia, who have been together through everything, are now eager to raise awareness about symptoms and early diagnosis as well as the long term impact that brain tumours have.

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Chantal

Diagnosed with an oligodendroglioma grade 2 in 2020

Throughout the period of the coronavirus pandemic, Chantal's life was to change more than most.

Following a seizure, she was diagnosed with a brain tumour, went through an awake craniotomy, followed by radiotherapy and chemotherapy. Remarkably she is also now training to run the Bristol 10k and raise funds to help others. 

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Yaël

Diagnosed with pilocytic astrocytoma in 2020

One of the shocking facts about brain tumours is that they can affect anyone at any age, and they kill more children and adults under the age of 40 than any other type of cancer.

Yaël wanted to share her experience with us to raise awareness that symptoms should not be dismissed simply because you are young. 

Stories A-Z

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Andi 

Diagnosed with 6 germinoma tumours in 2015

After having a brain tumour removed in 2014 Andi Nethercoat felt very alone. “So much changed for me after my operation and for three years I thought nobody cared,” said Andi. “There was no real after-care from the hospital; I was low; I’d had to make so many changes in my life and I was depressed.” But then Andi found his local Support Group run by Brain Tumour Support.

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Anna 

Diagnosed with diffuse intrinsic brainstem glioma in 2013

Diagnosed in 2013 with a low-grade inoperable brain tumour, Anna initially talked little about it. But the psychological & physical effects which it has had on her, and those around her, led her to start her blog "to write about different aspects of life with a brain tumour but also talk to other people who have their amazing stories to tell. We all have so much to say and there are things worth spreading."  Read Anna's blog via the link below:

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Arvin

Diagnosed with 6 germinoma tumours in 2015

A serious car accident changed Arvin’s life forever. But it wasn’t the injuries from the accident that did it - they were minor. It was the MRI scan that he had as a precaution.

“They found six brain tumours,” said Arvin. “Six germinomas.”

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Bill and Jane 

Diagnosed with 6 germinoma tumours in 2015

Our support services have helped Jane and Bill feel less alone after Bill was diagnosed with a Grade 4 glioblastoma.

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Chris 

Diagnosed with 6 germinoma tumours in 2015

During treatment for a brain tumour, Chris started to retreat from the world and became reclusive. Until he found his local support group.

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Dan

Diagnosed in 2011 with ependymoma, recurring 2014/2018

Dan was aged just 20 when he was first diagnosed with a brain tumour. It was a diagnosis which had been missed by GPs and came about as a result of a chance eye test.Ten years on, Dan and his wife Sonia, who have been together through everything, are now eager to raise awareness about symptoms and early diagnosis as well as the long term impact that brain tumours have.

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Ellie

Diagnosed with 6 germinoma tumours in 2015

Ellie was just 25 when she was diagnosed. She lives remotely and has found our on-line forum a huge help.

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Freyja 

Diagnosed with 6 germinoma tumours in 2015

After losing her husband to a rare form of abdominal cancer, Freyja was herself diagnosed with a brain tumour. Her Brain Tumour Support Group is a lifeline to her.

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Helen 

Diagnosed with 6 germinoma tumours in 2015

​When Helen was diagnosed with a grade one meningioma, she was in too much shock to read all the information and support leaflets she was given. It was only months later, after the tumour had been removed and she was off work, that she looked through them and found Brain Tumour Support.

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Jane 

Diagnosed with 6 germinoma tumours in 2015

It was the persistence of her optician that saved Jane's life and a Support Group and counsellor from Brain Tumour Support that helped her put it back together again.  Then one day she found herself entering a half marathon....

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Jenny 

Diagnosed with 6 germinoma tumours in 2015

​Jenny felt very alone after her brain tumour diagnosis. She looked for people who might be able to help and eventually found out about her local Brain Tumour Support Group. “Going to that first Support Group set off a chain of events that changed my life,” says Jenny.

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Julie 

Diagnosed with 6 germinoma tumours in 2015

Julie was an inspiration to many. After being diagnosed with a brain tumour, she carried on with her many sporting challenges and fundraising. Julie sadly passed away in February 2019 but her spirit, quiet determination and generosity to others will never be forgotten, and here she reveals how a counsellor from Brain Tumour Support helped her along the way. 

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Karen and Lucy

Diagnosed with 6 germinoma tumours in 2015

Meeting Karen at one of our Support Groups helped Lucy make one of the most difficult decisions of her life.

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Konnie 

Diagnosed with 6 germinoma tumours in 2015

When Konnie’s world was turned upside down by a brain tumour diagnosis, it was a Brain Tumour Support counsellor that helped her pick up the pieces.

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Laura 

Diagnosed with 6 germinoma tumours in 2015

A brain tumour diagnosis robbed Laura of her job as a sign language interpreter. But life also gave Laura a happy surprise. Read how our support services have helped her through the darkest of times and helped her celebrate the happy times.

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Lesley 

Diagnosed with 6 germinoma tumours in 2015

Lesley was just getting used to life again after treatment for ovarian cancer, when she was diagnosed with a brain tumour. Read about the difference our support has made to Lesley.

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Linda 

Diagnosed with 6 germinoma tumours in 2015

Eleven years after her brain tumour diagnosis and not being able to drive, Linda has her driving licence back. She hopes her story helps others not lose hope.

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Lucy 

Diagnosed with 6 germinoma tumours in 2015

For years, Lucy knew there was something wrong, but her symptoms were dismissed by doctors and opticians. Read more about her journey and how our support services have helped her.

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Mike and Carole

Diagnosed with 6 germinoma tumours in 2015

When Mike’s wife Carole was diagnosed with brain cancer, Brain Tumour Support was with him for every step of the way. From the shock of diagnosis, through navigating the often complex healthcare options, to organising palliative care and ultimately through bereavement.

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Nicole 

Diagnosed with 6 germinoma tumours in 2015

Our support services are freely available at any point and for as long they are needed, following a brain tumour diagnosis. For loved ones this, sadly, can be a particular need when faced with bereavement. This is Nicole's story.

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Nunzio and Glenis 

Diagnosed with 6 germinoma tumours in 2015

Glenis helped nurse Nunzio after his cancer diagnosis. Then he noticed that she was muddling her words. Now he cares for Glenis, who has a brain tumour.

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Phil 

Diagnosed with 6 germinoma tumours in 2015

Our Facebook Forum is a safe place for anyone affected by a brain tumour diagnosis to share stories and advice. Here is how it has helped Phil.

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Richard 

Diagnosed with 6 germinoma tumours in 2015

After his second surgery, Richard hit an all-time low and even considered taking his own life. It was the support he received from our counsellor and from his local Support Group that kept him going.

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Sammie and Jamie 

Diagnosed with 6 germinoma tumours in 2015

We supported Sammie and her young children during her husband Jamie's illness and after he passed away in November 2018. Read how our counselling service has helped this young family.

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Suzanne 

Diagnosed with 6 germinoma tumours in 2015

There are more than 100,000 people in the UK living with a brain tumour. Suzanne is one of them. Read her story and how our Facebook Forum helped her.

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Paul

Diagnosed with 6 germinoma tumours in 2015

After his brain tumour diagnosis, Paul was scared and worried about the future. He says attending one of our support groups has been a big help to him and his family.

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Tina

Diagnosed with 6 germinoma tumours in 2015

After being diagnosed with a brain tumour herself, Tina watched her beloved mum die from brain cancer. Read how Tina struggled to come to terms with her diagnosis and how the support she received continues to help her cope with all the challenges that she still faces on a daily basis after complications from brain surgery. 

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Andy

Diagnosed with meningioma in 2015

Andy's 'frightening and life changing experience' began in October 2015 with a partial headache and within two weeks his speech, mind and memory had gone and he was operated on urgently. 
He says "My blog details my inner thoughts as I fell ill, was diagnosed, operated on and the long road to recovery. I have been called 'a walking miracle' and I want my story to inspire fellow sufferers that you can get back to normal."

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Angie

Diagnosed with a low grade astrocytoma in 2015

Angie was diagnosed with a low grade astrocytoma when she was in her final year at University. Her blog tells the story of her recovery following a craniotomy in December 2015. Titling it 'Braintumourwarrior' she says "A #braintumourwarrior, by my own definition, is anyone fighting with all their might against this disease – be it through your own diagnosis, a friend or relative, low or high grade. I’ve met so many brain tumour warriors on my journey already, and the strength we all give to each other is quite something to see." 

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Anna

Diagnosed with diffuse intrinsic brainstem glioma in 2013

Diagnosed in 2013 with a low-grade inoperable brain tumour, Anna initially talked little about it. But the psychological & physical effects which it has had on her, and those around her, led her to start her blog "to write about different aspects of life with a brain tumour but also talk to other people who have their amazing stories to tell. We all have so much to say and there are things worth spreading." 

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Arvin

Diagnosed with 6 germinoma tumours in 2015

In October 2015, Arvin was diagnosed with six brain tumours. He has had great family support and has also found his local Brain Tumour Support Group very valuable, and so he wants his blog to be "If not a place for me to rant, but a place where I can help others."

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Dawn

Diagnosed with meningioma in 2008

For Dawn a meningioma brain tumour changed her life, but not her spirit – “In my previous life I enjoyed a 30 year career in nursing.  I was challenged with a brain tumour in 2008 and almost everything changed. My sense of humour, fun and the ability to support others remain intact! I now take the gift of each day as it comes.” Dawn's blog was deservedly recognised at the 2015 National UK Blog Awards, being a Highly Commended runner up in the Health category.

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Derran

Diagnosed with astrocytoma in 2013

Derran was diagnosed with an astrocytoma brain tumour in  June 2013. His blog recalls his diagnosis, surgery and subsequent recovery, and he plans to continue to update it, as well as posting other relevant information. Derran hopes that "Maybe this will help someone with the same issue, or help their family understand."

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Gerry

Diagnosed with glioblastoma in 2017

Gerry was originally from Ireland but then moved to the USA. In 2017 he was diagnosed with Stage 4 GBM. He decided to write a "...Diary of Hope blog so that my daily journal and experiences, come what may, may be of help to me, my family, and other people and their families who may be going through a similar experience." 

Sadly Gerry passed away in June 2020 but his spirit of hope and love (the way he signed off each blog entry) lives on.

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Heather

Diagnosed with meningioma in 2010

Heather had to leave her nursing career in 2011 after being diagnosed with a 'benign', inoperable, meningioma brain tumour. The impact that she has lived with since diagnosis has been profound - physically, emotionally and socially. However she has always aimed to keep a positive outlook, saying "I try to find other ways of making a contribution to society and exploring a way of life I have never lived before."

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Ira

Diagnosed with thalamic glioma in 2017

Ira lived in Pune, India. She was 3 when she was diagnosed with thalamic glioma in 2017. After a major surgery and several post-operative complications she was cared for lovingly at home before she sadly passed away in November 2018. Ira's mother, Pratima, was determined to create something positive from this personal tragedy and her blog was aimed to raise awareness about thalamic gliomas in children, dealing with rare cancers, the challenges of palliative care, and finding inner strength.

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Jill

Boyfriend diagnosed with oligodendroglioma in 2012

In 2012 Jill's boyfriend (now husband) B was diagnosed with a Grade 3 Oligodendroglioma.
​Her blog is a "record of the sometimes grim, sometimes surreal, sometimes wryly humorous" situation she and B find themselves in. It documents the trials and tribulations of being a caregiver for someone with brain cancer.

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Kate

Diagnosed with grade 2 tumour in 2015

Kate started her blog in May 2015 with these words - '‘He who must not be named’/‘Voldermort’ or the illegal hijacker in my brain (the grade two 2.5cm tumour) is not going to take over my life; I simply will not allow it.'  Her down to earth and often humorous writing reflects her experiences from diagnosis, through successful treatment and to her latest, encouraging, scan results.

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Kieran

Diagnosed with pineal germinoma in 2007

​In 2007 Kieran was diagnosed with a malignant brain tumour and his life and ambitions were turned upside down. However, more than 30 operations later he’s still positive and fighting.

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Lucy

Diagnosed with meningioma in 2016

Lucy started her blog in 2016 with the 'hope that by sharing my story others may be able to share, comment or just enjoy...'  Her brain tumour story however started in the previous year, and her continuing diary gives honest insights from looking back at symptoms and diagnosis, through to the frustrations of awaiting surgery.

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Lyla

Diagnosed with pilocytic astrocytoma in 2016

5 year old Lyla was diagnosed with a brain stem tumour in 2016. She has come through a 15 hour operation and the continuing treatment which she faces with incredible bravery and resilience. Her story shows how a brain tumour can continue to affect a family's life every day.

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Konrad

Diagnosed with glioblastoma in 2016

Konrad lives in the USA and was diagnosed with GBM 4 in September 2016. Having felt a great benefit from reading other people's experiences, he started his blog to reciprocate the help and support. Also, after many years steeped in scientific research, it's also a way to stay active and engaged. He explains "...a major struggle with the disease is fatigueness and an excessive daytime sleepiness as result of medication and the tumor itself. Reading and writing gets me out of bed and keeps my brain, or whatever is left thereof, active."

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Rachel

Diagnosed in 2014

Rachel, an international ​tri-athlete, was diagnosed in 2014 and then faced two life threatening operations, before making a remarkable recovery to battle her way back to fitness. 

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Sarah

Diagnosed in 2016

Sarah describes her blog as being ‘about everything from fashion, beauty and travel, as well as my experiences of being inconvenienced by a brain tumour’.  Diagnosed in October 2016 aged 29, Sarah has undergone an awake craniotomy, chemo-radiotherapy and ongoing oral chemotherapy, Her approach is most definitely to be positive. “ I have a new perspective on life which I am thankful for” and she says “I find focusing on what I can do, rather than can’t, keeps me positive.” And her biggest positive?.... She is now expecting her first child.