Your story

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. They include diaries and blogs which are not always just about medical matters, they also encompass wider feelings and ideas, expressions of creativity, and are often very positive, life affirming reflections.

If you have a blog or story yourself which you’d like added to the page do please share it with us here.

Recently added stories

In 2015, aged only in his mid thirties, Tommy was diagnosed with a Grade 4 GBM and told he had between 14 and 24 months to live. After a long time talking about it he finally decided to write a blog, originally to keep family and friends updated on his progress but also to share his experiences in the hope of helping others. His story includes details of the surgery and treatment fighting the disease, and also the positive experiences where he still tries to live life to the full and not give up.

Tommy

Diagnosed with glioblastoma grade 4 in 2015

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.

Ira

Diagnosed with thalamic glioma in 2017

All stories A-Z

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."

Andy

Diagnosed with meningioma 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." 

Angie

Diagnosed with a low grade astrocytoma in 2015

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." 

Anna

Diagnosed with diffuse intrinsic brainstem glioma in 2013

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."

Arvin

Diagnosed with 6 germinoma tumours in 2015

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.

Dawn

Diagnosed with meningioma in 2008

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."

Derran

Diagnosed with astrocytoma in 2013

Gerry, originally from Ireland, now lives in 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." 

Gerry

Diagnosed with glioblastoma in 2017

Heather had to leave her nursing career after being diagnosed with a 'benign' meningioma brain tumour, but says very positively "I hope to find other ways of making a contribution to society and exploring a way of life I have never lived before." She describes her blog as "The views of a person with a meningioma brain tumour, the changes in life that have to be dealt with, physically, emotionally and socially."

Heather

Diagnosed with meningioma in 2010

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.

Jill

Boyfriend diagnosed with oligodendroglioma in 2012

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.

Kate

Diagnosed with grade 2 tumour in 2015

​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.

Kieran

Diagnosed with pineal germinoma in 2007

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."

Konrad

Diagnosed with glioblastoma 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.

Lucy

Diagnosed with meningioma 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.

Lyla

Diagnosed with pilocytic astrocytoma in 2016

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. 

Rachel

Diagnosed in 2014

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.

Sarah

Diagnosed in 2016

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