From emergency brain surgery to Cancer Carpool Karaoke, Elisabeth shares her experience of living with glioblastoma, rebuilding her strength and finding joy in everyday life.
In June 2020, 35-year-old Elisabeth Pugh woke during the night with a sudden, sharp headache. She had no idea that this would be the beginning of a life-changing journey.
A mother of two young children, Elisabeth was soon to discover that she had a glioblastoma (GBM), an aggressive form of brain cancer.
What followed was a series of brain surgeries, chemotherapy, radiotherapy, rehabilitation and difficult decisions about her future.
But Elisabeth’s story is also about family, friendship, music and finding moments of happiness in the middle of uncertainty.
More than five years after her diagnosis, she continues to make memories, raise money for charity and appreciate what she calls her glimmers — the small things that make life worth looking forward to.
Her experience shows how individual life with glioblastoma can be, while acknowledging the seriousness of a diagnosis that affects every person differently.
The Symptoms That Would Not Go Away
Elisabeth’s first symptom was a sudden headache that woke her from sleep.
Concerned, she contacted her GP the following morning and was advised to go straight to A&E.
At hospital, she was assessed and given medication for nausea. Because she was only 35, she was reassured that her symptoms were unlikely to be caused by anything serious.
But the pain did not disappear.
Over the following days, her headache became constant. Ordinary painkillers did nothing to relieve it, and she began vomiting and struggling to eat.
She knew something was wrong.
When her symptoms continued to worsen, Elisabeth contacted her GP again. This time, her doctor arranged an urgent referral back to hospital.
It was a decision that proved crucial.
Collapsing in A&E and Discovering a Brain Tumour
Elisabeth’s mother drove her back to hospital.
It was during the COVID-19 pandemic, when visiting restrictions meant her mother had to remain outside.
While Elisabeth was inside A&E, she collapsed.
When she regained consciousness, she was lying in a hospital bed wearing a gown. An MRI scan had been carried out while she was unconscious.
The scan had revealed a mass in her brain.
The following day, a consultant explained what doctors had discovered.
Elisabeth was alone when she received the news.
“I didn’t have anybody with me… it was terrifying.”
Doctors later discovered that the headaches she had experienced over eight days were associated with an ongoing brain haemorrhage.
What had initially appeared to be a severe headache was something far more serious.
For Elisabeth and her family, life had changed almost overnight.
Watch Elisabeth tell her story in full in the Aunty M Brain Tumours Talk Show interview below, or keep reading for the written version
The Brain Surgery Doctors Initially Thought Was Impossible
Following her diagnosis, Elisabeth was transferred to King’s College Hospital in London, where specialist doctors took over her care.
Initially, she was scheduled to undergo a biopsy so doctors could examine the tumour.
However, the procedure had to be stopped because of bleeding.
Within 72 hours, Elisabeth was called back for a craniotomy — an operation in which surgeons temporarily remove part of the skull to access the brain.
Until then, she had repeatedly been told that her tumour was inoperable.
But her surgeon believed an operation was worth attempting.
During surgery, he was able to remove approximately 96% of the tumour.
For Elisabeth, this was an extraordinary turning point.
“It’s thanks to my surgeon… everyone had said it was inoperable.”
Her experience highlights why treatment decisions depend on the individual tumour, its location and the specialist team’s assessment of what can safely be achieved.
However, brain surgery was only the beginning of her journey.
Learning to Walk Again After Brain Surgery
Following her first craniotomy, Elisabeth was left with paralysis affecting the left side of her body.
Before her diagnosis, she had been independent and busy raising her family. Suddenly, she needed help with everyday activities.
She had to relearn how to walk and use her arm.
Tasks that had once been automatic became significant challenges.
“It was slightly soul destroying, if I’m honest.”
Recovery required patience, determination and the support of those around her.
Like many people recovering from brain surgery, Elisabeth discovered that treatment could leave her facing difficulties she had never anticipated.
Her experience is an important reminder that surviving an operation and recovering from its effects are two very different things.
Rehabilitation can be an essential part of life after brain tumour treatment, helping people regain skills, adapt to changes and improve their independence wherever possible.
Radiotherapy, Chemotherapy and Raising Two Young Children
After surgery, Elisabeth began six weeks of radiotherapy alongside daily temozolomide (TMZ) chemotherapy.
The treatment was physically exhausting.
At the same time, she was trying to remain present for her two young children.
One particularly emotional moment came when her youngest child turned one while Elisabeth was in hospital.
Fortunately, staff arranged for her to spend the day at home with her family.
It gave her the opportunity to celebrate a milestone that meant so much.
For parents facing a brain tumour diagnosis, treatment is not only about hospital appointments, scans and medication.
It is also about birthdays, school routines, family responsibilities and trying to preserve everyday life while navigating an uncertain future.
Elisabeth’s story offers a glimpse into the difficult balance many families experience.
Facing Glioblastoma Recurrence and More Brain Surgery
After her initial treatment, follow-up MRI scans revealed that the tumour had returned and was growing quickly.
Elisabeth faced another difficult decision.
She agreed to undergo a second craniotomy.
Following this operation, she started a different course of chemotherapy, which continued for approximately a year.
Later, when the tumour returned again, she underwent a third craniotomy followed by further radiotherapy.
Each recurrence brought new challenges, questions and decisions.
Living with glioblastoma can involve repeated treatment and ongoing uncertainty about what future scans may show.
For Elisabeth, that meant adapting to new circumstances while continuing to find reasons to enjoy life.
Her experience also demonstrates why regular monitoring and communication with a specialist neuro-oncology team are so important.
Finding Laughter Through Cancer Carpool Karaoke
One of the most memorable parts of Elisabeth’s journey is how she found a way to bring music and laughter into her treatment days.
During a later course of radiotherapy, she came up with an idea.
Instead of asking her husband to accompany her to every appointment, she invited different friends to join her on the journeys to hospital.
Each friend chose a song.
Together, they sang in the back of an Uber as they travelled to treatment.
She called it Cancer Carpool Karaoke.
What might otherwise have been another difficult hospital journey became an opportunity to laugh, sing and spend time with people she loved.
The videos also brought enjoyment to others who followed her experiences online.
It was a way of finding something positive in circumstances she had not chosen.
For Elisabeth, humour was not about ignoring the seriousness of glioblastoma.
It was about allowing herself moments of happiness alongside everything else.
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The Importance of Finding Your Glimmers
A glioblastoma diagnosis changed how Elisabeth and her family thought about the future.
Rather than automatically saying no to opportunities, they began looking for ways to say yes.
They booked events, made plans and created memories together.
Concerts, family days out and experiences with friends became things to look forward to.
Elisabeth has a special name for these moments.
“I call them my glimmers.”
Her glimmers are the experiences, however big or small, that bring enjoyment and give her something to anticipate.
For someone living with uncertainty, having plans and meaningful moments can be incredibly important.
Of course, not everyone living with glioblastoma will feel able to approach life in the same way.
Some people may want to travel and attend events. Others may find comfort in quieter moments at home, spending time with loved ones or simply having a manageable day.
There is no right way to live with a brain tumour.
Elisabeth’s approach is personal to her, but her message about appreciating moments of connection is something many people may recognise.
How St Christopher’s Hospice Supported Elisabeth and Her Family
Another important part of Elisabeth’s experience has been the support she received from St Christopher’s Hospice.
Before becoming involved with the hospice, she associated hospice services mainly with end-of-life care.
But she discovered they could offer much more.
St Christopher’s provided practical and emotional support, including services for her family.
Support available to Elisabeth included:
- Family support and guidance.
- Reflexology and acupuncture.
- Day services and opportunities to spend time in a supportive environment.
- Emotional reassurance during difficult periods.
- Help navigating some of the wider challenges of living with a serious illness.
For Elisabeth, the hospice became somewhere she could receive care and support rather than somewhere associated only with dying.
“It doesn’t have to be associated with death all the time.”
Her experience helps challenge a common misunderstanding about hospice and palliative care.
Palliative care can support people at different stages of serious illness. It focuses on managing symptoms, improving comfort and helping people maintain the best possible quality of life.
It can also support families and carers, sometimes alongside treatment directed at the tumour.
The services offered vary between hospices, but Elisabeth encourages people not to dismiss the possibility of receiving help simply because of the word hospice.
#makingmemories
Music, Fundraising and Finding Purpose
Music has always been an important part of Elisabeth’s life.
As a classically trained musician, performing and sharing music with others brought her enjoyment long before her diagnosis.
After learning she had glioblastoma, she decided to organise a fundraising concert with her musician friends.
At the time, she wondered whether it might be her last opportunity to perform with them.
But that concert became the beginning of something much bigger.
Instead of being a one-off event, it developed into an annual Christmas tradition.
Each year, friends reunite to perform music and raise money for charity.
In the year before our interview, they raised approximately £5,000 for hospice care.
What began as a concert organised during a frightening period of her life became a continuing source of friendship, fundraising and purpose.
Living With Glioblastoma More Than Five Years After Diagnosis
When Elisabeth received her diagnosis in June 2020, she could not have known everything the following years would bring.
She has experienced several brain surgeries, different chemotherapy treatments, radiotherapy, physical rehabilitation and periods of recurrence.
She has also watched her children grow, spent time with friends, performed music and helped raise money for a hospice that supported her family.
At the time of our interview, more than five years after diagnosis, Elisabeth reported that her latest MRI scan was stable.
Her story is an example of a person living longer than is typical with this aggressive disease.
However, glioblastoma remains a serious, life-limiting cancer, and her experience should not be taken as a prediction of how someone else’s illness will progress.
Elisabeth has her own way of expressing the determination that has shaped her journey.
“I accepted the diagnosis, but there is no way on this earth I’m going to accept the prognosis.”
It is a statement that reflects her personal attitude towards living with glioblastoma.
For others, living with this diagnosis may look very different, and that is equally valid.
Important Takeaways From Elisabeth’s Glioblastoma Story
There are several important messages within Elisabeth’s experience.
- Take concerning symptoms seriously. Elisabeth returned to her GP when her headaches and vomiting continued to worsen. New, severe or rapidly worsening neurological symptoms should be assessed urgently.
- Treatment is individual. Elisabeth’s surgical options changed following specialist assessment. Decisions about surgery and other treatments depend on each person’s circumstances.
- Recovery can be challenging. Elisabeth needed to relearn how to walk and use her arm after surgery. Rehabilitation and practical support can make a meaningful difference.
- Families need support too. A brain tumour diagnosis affects partners, children, friends and carers, not just the person receiving treatment.
- Supportive and palliative care can help throughout illness. Elisabeth found emotional and practical support through her local hospice.
- Moments of enjoyment still matter. Music, friendship, family time and her ‘glimmers’ continue to be important parts of Elisabeth’s life.
Above all, her experience reminds us that people living with glioblastoma are more than their diagnosis.
Every person has their own relationships, interests, challenges and priorities.
And every story deserves to be heard.
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Understanding Glioblastoma (GBM)
Glioblastoma, commonly referred to as GBM, is a fast-growing, grade 4 malignant brain tumour that develops in the central nervous system.
It is the most common type of malignant primary brain tumour in adults.
Glioblastoma can grow into surrounding brain tissue, making it difficult to remove completely through surgery.
Although treatment can help control the tumour and manage symptoms, glioblastoma is currently considered incurable with standard treatment.
The outlook can vary depending on factors including age, general health, tumour location, how much tumour can be safely removed and certain molecular characteristics.
What Are the Symptoms of Glioblastoma?
Symptoms depend on which part of the brain is affected, as well as the tumour’s size and the amount of swelling around it.
They may include:
- Persistent or worsening headaches.
- Nausea and vomiting.
- Seizures.
- Weakness or changes in movement.
- Difficulties with speech, memory or concentration.
- Changes in personality, behaviour or thinking.
- Vision problems.
- Balance and coordination difficulties.
Not everyone experiences the same symptoms, and having one or more of these symptoms does not automatically mean someone has a brain tumour.
However, new or worsening neurological symptoms should be discussed with a healthcare professional. Sudden severe headaches, seizures for the first time or new neurological difficulties may require emergency assessment.
How Is Glioblastoma Treated?
Treatment is planned by a specialist neuro-oncology team and depends on the individual.
Options may include:
Surgery: Where possible, surgeons aim to remove as much of the tumour as safely as they can. Sometimes a biopsy is carried out instead.
Radiotherapy: High-energy radiation is used to damage tumour cells and help control their growth.
Chemotherapy: Temozolomide (TMZ) is commonly given alongside radiotherapy and may continue afterwards.
Medication to manage symptoms: Steroids may help reduce swelling, while anti-seizure medication and other medicines may be prescribed where needed.
Rehabilitation and supportive care: Physiotherapy, occupational therapy, speech and language therapy, psychological support and palliative care may all help improve day-to-day life.
Clinical trials: Some patients may be eligible for research studies investigating new treatments. Your specialist team can explain whether an appropriate trial is available.
Treatment may change if the tumour progresses or returns.
Your own medical team is best placed to explain the available options, expected benefits and possible side effects.
Frequently Asked Questions About Glioblastoma
Can Someone Live for More Than Five Years With Glioblastoma?
Yes. A small proportion of people with glioblastoma live for five years or longer after diagnosis.
However, long-term survival is uncommon, and glioblastoma remains an aggressive, life-limiting cancer.
Elisabeth’s experience is an individual story, not a prediction for other patients.
Can Glioblastoma Come Back After Treatment?
Yes. Glioblastoma frequently recurs, even after surgery, chemotherapy and radiotherapy.
This is partly because tumour cells can extend into surrounding brain tissue and may remain after treatment.
Regular MRI scans help doctors monitor the tumour and assess whether further treatment is needed.
What Is the Difference Between Glioblastoma and Astrocytoma?
Both are types of glioma, but modern classification distinguishes glioblastoma, IDH-wildtype, from astrocytoma, IDH-mutant.
Both can be grade 4, but they are biologically different diagnoses and may have different treatment considerations and outcomes.
Can You Have a Good Quality of Life With Glioblastoma?
Quality of life varies considerably between individuals and over time.
Some people remain active for a period following diagnosis, while others experience significant neurological symptoms, fatigue or disability.
Appropriate treatment, rehabilitation, symptom management, emotional support and palliative care can help people live as comfortably and meaningfully as possible.
When Should Someone With Glioblastoma Consider Palliative Care?
Palliative care can be introduced at different stages of illness, including during active treatment.
It focuses on symptom relief, emotional wellbeing, comfort and practical support for patients and families.
A referral does not necessarily mean that someone is approaching the end of life.
Medical disclaimer: This article shares an individual’s personal experience alongside general health information. It is not a substitute for personalised medical advice, diagnosis or treatment from a qualified healthcare professional. Treatment options, outcomes and support needs vary between individuals.
Read More Glioblastoma Stories
Read more personal Glioblastoma stories on Aunty M Brain Tumours
If You Have Recently Been Diagnosed With Glioblastoma
If you have landed on this page after a glioblastoma diagnosis, whether it is your own or someone you love, please know you are not alone.
Every glioblastoma story is different.
Glioblastoma (GBM) is an aggressive, grade 4 brain tumour. Although it is a serious diagnosis, the way it affects each person, their treatment options and their experiences can be different.
Some people have surgery, radiotherapy and chemotherapy. Others may have fewer treatment options because of the tumour’s location, their general health or other medical factors.
Some people experience long-term effects from the tumour or its treatment, while others face challenges with mobility, speech, memory, fatigue or seizures. Families and carers may also face considerable emotional and practical difficulties.
Try not to compare your journey too closely with anyone else’s.
Reading other people’s experiences can offer comfort, understanding and a sense of connection. However, another person’s treatment experience or survival does not determine what will happen to you.
A glioblastoma diagnosis can bring difficult questions about treatment, the future and how life may change. It is understandable to feel frightened, overwhelmed or uncertain.
Take things at your own pace, ask questions and remember that you do not have to face this journey alone.
Where to Go After a Glioblastoma Diagnosis?
If you or someone you care about has been diagnosed with glioblastoma, there are organisations offering information, emotional support, practical advice and opportunities to connect with others.
The Brain Tumour Charity
A UK charity providing information about glioblastoma, possible treatments, symptoms and living with a brain tumour.
It also offers emotional support, support groups and resources for patients, families and carers, including those coping with a serious or life-limiting diagnosis.
Visit The Brain Tumour Charity
Brainstrust – Glioblastoma Support
Offers practical and emotional support to people living with glioblastoma, including those facing a new diagnosis or tumour recurrence.
Its dedicated glioblastoma support hub provides information about treatment, research, clinical trials and opportunities to connect with others who understand life with GBM.
brainstrust also offers individual support, coaching, patient guides and dedicated online glioblastoma events.
Explore its dedicated Glioblastoma Support Hub
Brain Tumour Support
A UK charity providing support for anyone affected by a brain tumour, including patients, families, carers and loved ones.
It offers individual and group support, opportunities to connect with others and specialist emotional support for those navigating diagnosis, treatment and everyday life.
Macmillan Cancer Support
Provides information, emotional support and practical guidance for people affected by cancer, including glioblastoma.
Its services include help with understanding treatment, managing side effects, financial concerns, benefits, employment and supporting family members.
Macmillan also offers information and support for people caring for someone with cancer.
Visit Macmillan Cancer Support
Cancer Research UK
Provides reliable information about glioblastoma, including symptoms, diagnosis, treatment options and ongoing research.
Its resources can help patients and families understand the medical aspects of glioblastoma and prepare questions for their specialist medical team.
Read its information about Glioblastoma
Brain Tumour Research
Funds research into brain tumours, including glioblastoma, and campaigns for greater awareness and investment in research.
Its work aims to improve understanding, develop better treatments and ultimately find cures for all types of brain tumours.
NHS Neuro-Oncology, Rehabilitation and Palliative Care Services
Your specialist medical team can help you understand your glioblastoma diagnosis, treatment options and ongoing care.
Depending on your needs, additional support may include physiotherapy, occupational therapy, speech and language therapy, psychological support or help managing seizures, headaches and fatigue.
Palliative care and hospice services can also provide valuable support for people living with glioblastoma and their families.
Palliative care is not only for end-of-life care. It can help manage symptoms, provide emotional support and improve quality of life at different stages of illness, including alongside active treatment.
Ask your GP, clinical nurse specialist or neuro-oncology team about appropriate referrals and local support services.
Read the NHS Information About Brain Tumour Support
Would You Like to Share Your Glioblastoma Story?
At Aunty M Brain Tumours, we believe every person’s experience deserves to be heard.
Whether you have recently been diagnosed, are undergoing treatment, living with glioblastoma, supporting someone you love or remembering someone you have lost, your experience could help another person feel less alone.
Find out how to share your brain tumour story
Claire Bullimore is an influential figure in the brain tumour community. She embarked on her brain tumour journey and was diagnosed with an intraventricular meningioma. In response to her experiences, Claire founded ‘Aunty M Brain Tumours,’ a platform dedicated to sharing brain tumour stories. Based in London, England, Claire also identifies as a blogger and speaker for Aunty M Brain Tumours, shedding light on the challenges faced by those diagnosed and amplifying their voices for better awareness and support. Through her dedication and advocacy, Claire’s efforts have been recognized by Brain Tumour Research and other organizations, spotlighting her commitment to making a positive difference for individuals impacted by brain tumours.
