OurStoryBank: Share your glioblastoma story
OurStoryBank: Jessica Morris’s Story
Groups and individuals can help you grapple with the disease, whether by sharing tips on how to cope with aspects of living with GBM, advising you on how to pursue new treatments, or dealing with the financial stresses that can arise. Here are some of the resources on hand:
Receiving a GBM diagnosis can be very lonely and frightening. But you are not alone.
Groups and individuals can help you grapple with the disease, whether by sharing tips on how to cope with aspects of living with GBM, advising you on how to pursue new treatments, or dealing with the financial stresses that can arise. Here are some of the resources on hand:
YOUR QUESTIONS ANSWERED
Talking to others who are going through the same experiences as you can often be comforting, helpful and inspiring.
OurBrainBank Facebook Group
Our private Facebook group for people living with GBM, care partners, advocates, and those who’ve lost a loved one. We share information and experiences and ask questions about GBM. The group currently has 1,800+ members. To join, click the “Join group” button and answer the short entry questionnaire which asks how your life has been affected by GBM and for your pledge to abide by the group’s basic rules of conduct. Within the group is a mentor program where you can connect one-on-one with other people — those living with GBM, care partners, or someone who has lost a loved one.
GBM Survivors to Thrivers
A private Facebook group with 17,000+ members for patients, caregivers, and families of people living with GBM. The page can be updated with multiple posts per day, which some people find overwhelming, and you will need to filter for what is most useful to you and your situation. However, it does offer plenty of helpful information about GBM. To join, click the “Join group” button.
GBM support for family and caregivers
A private Facebook group with 1,600+ members that serves as a safe space for family members and caregivers of loved ones diagnosed with GBM. To join, click the “Join group” button.
BrainsTrust – Brain Tumour Support Group
A private Facebook group with 3,100+ members to connect with patients, caregivers and families. Brainstrust is a UK wide brain tumour charity and a community, which helps thousands of people who are affected by any form of brain tumour diagnosis. You can ask specific questions in the group and follow for information shared by others. Brainstrust keeps a list of alternative treatments (UK-centric, but includes international options)
Support for patients using Novocure’s Optune device
A private Facebook group for people with GBM or their caregivers who are either using Optune or looking for more information on it. This page is not affiliated with Novocure who makes the device in any way. Rather, it was created to give encouragement and positive reinforcement for people using or curious about Optune. People share tips and tricks about using the device which is worn on the head and which uses mild electrical fields to disrupt the progression of the tumor. The group also has a Q & A file about Optune which is available to members. To join, click the “Join group” button.
Imerman Angels One-on-one mentorship and support for others living with GBM
Imerman Angels provide one-on-one mentorship to people living with a cancer diagnosis as well as caregivers to ensure that nobody has to face cancer alone. If you request support, Imerman will partner you with a “Mentor Angel.” You can also become a mentor to provide psychosocial support, empathy and understanding to someone living with a cancer diagnosis or a caregiver.
Inspire
An online support group and discussion community which connects patients, families, friends and caregivers of people living with a brain tumor for support and inspiration around the world. It is sponsored by the American Brain Tumor Association and covers all brain tumors, not just GBM. This group is a good place to post questions about new treatments or quality of life concerns. To join click the “Join Inspire” button.
Brain Tumor Twitter is a social media community. It rapidly connects you with thousands of others with shared experiences and posts useful information.
Create your own community
You can also build your own community of people who love and care for you and want to help and be kept informed about your GBM journey. The website Lotsa Helping Hands offers an easy to use tool for creating your own support network online.
The Brain Tumour Charity
The Brain Tumour Charity is the world’s leading brain tumor charity and the largest dedicated funder of research into brain tumors globally. They provide a clear overview of treatment options with a UK focus, covering the standard of care, as well as emerging treatments and complementary therapies. You can sign up for a free information pack, and contact their support and information team by phone, email or live-chat.
Brain Tumour Research
A UK-based charity focused on finding a cure for all types of brain tumors through campaigning to increase the national investment in brain tumor research. They provide an overview of treatment options based on the most recent UK guidelines, as well as some information on additional treatments.
Brains Trust
A UK-based brain tumor charity providing personalized support to people with a brain tumor and their loved ones. Their free PDF Patient Guide gives a solid explanation of brain tumour treatment, including GBM (a high-grade glioma) under the NHS standard of care.
National Institute for Health and Care Excellence
Official guidance and advice on brain cancers, used to develop recommendations that guide decisions in health, public health and social care.
Inside Stuarts Head
A really rich resource for exploring treatment options, established by Stu, a GBM patient and his partner Esther. This is specifically about the experience of GBM in the UK, from the perspective of their personal journey rather than official medical advice.
Al Musella Foundation/Cancer Commons
Cancer Commons and the Musella Foundation have collaborated to create a network of oncology experts that can help people living with brain cancer and their relatives navigate treatment and care options to create the optimal treatment and tests plan that is personalized to the individual’s needs. They provide one-on-one support. To connect with an oncology expert, fill out your information here.
End Brain Cancer
End Brain Cancer helps people living with a brain cancer diagnosis and those who know someone living with a brain cancer diagnosis access information, resources and rapid treatment. They have one-on-one personalized consultations, a “Direct Connect” Program that provides information, resources and support and a clinical Research Nurse and Case Manager who is available to take questions or concerns. You can find all of their resources here. They have a Patient Resource Center with informational fact sheets and videos which you can find here.
NCI-Connect
The National Cancer Institute provides strategies for people living with a diagnosis and caregivers to manage symptoms. They also run their own clinical trials for people living with GBM as well as other cancers which you can find here.
Their Neuro-Oncology Branch healthcare team offers people living with a diagnosis a comprehensive care plan for the best treatment which can be organized through a referral process. You can find all the information about the referral process and the consultations here. They request that the patient or family member contact them directly for the referral for consent purposes. Consultations are free-of-charge.
Many neuro-oncologists recommend people with GBM consider a clinical trial that explores promising new treatments that go beyond the standard of care. Some trials are in the UK, but others are in different countries and would require travel.
ClinicalTrials.gov
Not a matching service, but a search engine with trials around the world. It can be difficult to navigate, but all the information is there. Make sure trials are “recruiting” and “interventional” (although “observational” GBM trials are helpful for research in general).
Cancer Research UK
Good information about clinical trials, as well as offering a search engine (by cancer type, drug name, and trial name) for trials in the UK. You can also see the results of past trials once they have been published.
The Brain Tumour Charity
Information on research and clinical trials, including how to search for trials and an information phone line.
My Tomorrows
A free platform that helps patients and doctors to find treatments and access drugs that are still in development. This service is not UK-specific, so some treatments may be harder to access than others from this country, and may require working closely with a medical specialist.
The Brain Tumour Charity
Information for people affected by GBM and caregivers on financial support you may be entitled to and how to apply e.g. Personal Independence Payment (PIP) and Employment and Support Allowance (ESA). You can also book an appointment for benefits and money advice.
Brains Trust
Useful information on a range of financial areas for people affected by brain cancer and caregivers, as well as the option to speak to their Welfare and Benefits Advisor Volunteer. They also list other organisation who offer support and advice on finances, including Macmillan and Citizens Advice.
Brain Tumour Research
Information on sources of financial advice and support, as well as potential grant providers.
Cancer Research UK
An overview of the different types of support available at home for people living with a brain tumor and caregivers.
Marie Curie Nurses
Information about Marie Curie nurses who can provide care and support at home, including over night, arranged through your district nurse or GP.
The Brain Tumour Charity
Information and resources for caregivers, including advice on how to care for yourself as a caregiver. They have a useful booklet that can be downloaded here.
Doctors will say “don’t google GBM” but there are good resources out there. We’d start with these which are relatively easy to digest: The Musella Foundation and Novocure offer free PDF booklets which explain GBM and treatment options. You can find the Musella PDFs here and the Novocure PDFs here.
This short video overview of GBM from a Harvard Medical School MD from 2021 is on our YouTube Channel and includes a discussion on GBM, treatments, and the importance of clinical trials. Our YouTube Channel posts videos from reputable sources on all things GBM-related.
Brain Tumour Foundation of Canada
The foundation offers several excellent guides, factsheets and handbooks to living with a brain tumour. See their resources page here.
On a more personal level, it can be very helpful to read and listen to other people’s experiences of their GBM journey:
- Jessica Morris
All In My Head – Our founder Jessica Morris wrote a memoir All In My Head about her five-year journey with GBM. It is an inspiring and moving account that takes you with her as she deals with her devastating diagnosis, the dilemma of receiving conflicting advice from world-leading neuro-oncologists, and how she determined to fight back against the disease. The book is already available as an Audiobook and is out in the UK and can be ordered through this portal. - Patrick Koske-McBride
Patrick Koske-McBride is just one of the many individuals who have written vivid accounts of their individual journeys through living with a GBM diagnosis. Patrick is a long-term GBM survivor and an honest and darkly funny chronicler of his experience. We recommend you start with “How to Survive Terminal Cancer” as well as his GBM story and his GBM Science from a Scientist. - This episode of Crisis What Crisis? explores the experiences of two of our UK board members, Andy and Richard, who have lost loved ones to GBM and know first-hand the experience of navigating a diagnosis of a loved one.
THE POWER OF COMMUNITY
STORIES.
Op-ed by Board Member Sundas Hashmi
There’s a ticking time bomb in my head. I’m learning to live with it.
Like most people in treatment for brain tumors in the United States, I’ve had to adapt to a mind that feels very different from the one I once knew.
“The Stars Will Still Be There: What my daughter taught me about love, life and loss” — memoir by OurBrainBank board member Nicola Nuttall
Nicola Nuttall writes movingly about her daughter Laura who lived an incredible vivid life even after being diagnosed with glioblastoma.
OurStoryBank: Georgie Maynard, living with glioblastoma
Over the last year we’ve entered this unexpected brain cancer world after discovering a glioblastoma (GBM) brain cancer tumour, grade 4, and consequently limited life expectancy.
New York Times Op-ed by Board Member Sundas Hashmi
My Brother Died of Brain Cancer. 20 Years Later, I Had It, Too.
I was told it didn’t run in families. Was it just chance?
STORIES.
Op-ed by Board Member Sundas Hashmi
There’s a ticking time bomb in my head. I’m learning to live with it.
Like most people in treatment for brain tumors in the United States, I’ve had to adapt to a mind that feels very different from the one I once knew.
“The Stars Will Still Be There: What my daughter taught me about love, life and loss” — memoir by OurBrainBank board member Nicola Nuttall
Nicola Nuttall writes movingly about her daughter Laura who lived an incredible vivid life even after being diagnosed with glioblastoma.
OurStoryBank: Georgie Maynard, living with glioblastoma
Over the last year we’ve entered this unexpected brain cancer world after discovering a glioblastoma (GBM) brain cancer tumour, grade 4, and consequently limited life expectancy.
New York Times Op-ed by Board Member Sundas Hashmi
My Brother Died of Brain Cancer. 20 Years Later, I Had It, Too.
I was told it didn’t run in families. Was it just chance?
