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. 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.
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. 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.
National Brain Tumor Society live online support group
An online support group called Brain Tumor Support Conversations run by and for patients and care partners of people living with a brain tumor diagnosis. The two facilitators of the group have first-hand experience of GBM: Adam Hayden was diagnosed in 2016 and Lisa O’Leary is a former care partner to her late husband Patrick who passed from the disease. The support group meets on the third Sunday of every month from 7-8 pm ET/4-5 pm PT. You can sign up here.
Brain Tumor Twitter is a social media community. It rapidly connects you with thousands of others with shared experiences. The Twitter account @BTSMchat hosts a live chat to discuss all things related to brain tumors, not just GBM, on the first Sunday of each month at 8 pm ET/5 pm PT.
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.
Brain Tumor Network
Provides free, individualized reliable information about primary brain tumors for people of all ages. Their navigation services help you understand your diagnosis, explore treatment options and provide emotional support and medical records assistance. Patient Navigators are professionals who guide people living with a brain tumor and caregivers through every phase of their care. You can connect with a navigator by inputting your information here.
National Brain Tumor Society
The National Brain Tumor Society has a resource list of treatment options for each step of your treatment journey, from before surgery, after surgery and before treatment, during treatment, and after treatment. They also have a clinical trial finder tool that enables you to search for your clinical trials local to your area and specific to your tumor type. You can find all of this information on this page.
American Brain Tumor Association
The American Brain Tumor Association is a trustworthy resource, as the oldest nonprofit organization dedicated to brain tumor education in the United States and a funder of more than $32 million in brain tumor research. One of their resources is a guide to treatment centers which you can find here.
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 services are only for people in the US (or willing to travel), but there are international options.
Brain Tumor Network
They have a navigation service where you meet with a Patient Navigator at no cost and they provide a personalized clinical trial search. You can access this service here by clicking the “Get support now” button at the top of the page.
National Brain Tumor Society
NBTS has a clinical trial finder which is easy to use and can be tailored to your specific tumor type. You can access it here.
Al Musella Foundation/Cancer Commons
Cancer Commons have nurse navigators and patient support specialists who can help you access treatment options. To start, fill in your details here.
American Brain Tumor Association
The American Brain Tumor Association has a comprehensive Clinical Trial Brochure which is very helpful and informative.
ClinicalTrials.gov
This is a search engine with trials around the world. It can be difficult to navigate, but all the information is there. Anyone can use this, not just US citizens. Make sure that the trials are specified as “recruiting” and “interventional” although “observational” GBM trials are helpful for research in general.
Leal Health
Leal Health is for people living with a diagnosis and caregivers. They offer an AI-powered decision support platform designed to try and speed up the process of developing new treatments. You can specify which type of cancer you have here to get started.
Brain Tumor Network
BTN has a list of financial assistance resources which you can find here by clicking on the drop-down general financial assistance section.
Caregiver Resources
You can find advice and resources on obtaining help at home here and resources for caregivers here.
National Cancer Institute
The federal government NCI offers information and resources for caregivers, including advice on how to care for yourself as a caregiver. It has a useful booklet, When Someone You Love Is Being Treated for Cancer.
Brain Tumour Foundation of Canada
Personal Stories
Jessica Morris
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 that are free by mail or digitally for anyone in Canada.
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; it is released in the US and Canada in January 2023. - 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?
