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. We have also included diaries and blogs which are not always just about medical matters, but sometimes express wider feelings, ideas and creativity, and are often very positive, life affirming reflections.
If you have a story yourself which you’d like to share, please tell us about it here.
Recently added stories
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.
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.
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.
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."
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."
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."
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."
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.
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."
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.
Diagnosed with meningioma in 2010
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."
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.
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.
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.
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.
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.
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.
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."
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.
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.
Diagnosed with glioblastoma in 2015
In 2015, aged only in his mid thirties, Tom 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. It included details of the surgery and treatment fighting the disease, and also the positive experiences as he always aimed to live life to the full. Sadly Tom passed away in April 2019, just 6 weeks before the birth of his daughter.
Tom's blog is no longer online but, having shared it on this page, we know it touched and inspired many people and we plan to share a new account of his story in tribute to him.