Living With an Inoperable Brain Tumour

When Holly Maxwell was diagnosed with a central neurocytoma, her life changed in ways she could never have imagined. From brain surgery and complications to the challenges of recovery and rebuilding her confidence, Holly shares what it means to live with a rare brain tumour.

A brain tumour diagnosis is something nobody expects, and for Holly Maxwell, discovering she had a central neurocytoma was the beginning of an uncertain journey.

What started with symptoms that seemed relatively minor eventually led to investigations, a diagnosis, multiple operations and a recovery that affected far more than her physical health.

Holly’s experience has involved learning to live with an inoperable central neurocytoma, dealing with complications following surgery and adjusting to a life that did not always look the way she had imagined.

But her story is also about the importance of family, finding ways to move forward and recognising how much support can matter when everything changes.

Holly joined me on the Aunty M Brain Tumours Talk Show to share her experience as part of Brain Tumour Awareness Month.

Watch Holly tell her story in full in the Aunty M Brain Tumours Talk Show interview below, or keep reading for the written version

In our conversation, Holly talks about her initial symptoms, being diagnosed with a rare brain tumour, undergoing three operations, her recovery and the impact of living with a central neurocytoma.

She also shares how her family supported her, the challenges of treatment and why speaking openly about brain tumours is important.

When Holly First Noticed Something Was Wrong

Like many people who discover they have a brain tumour, Holly did not initially realise how serious her symptoms might be.

What began as seemingly minor health problems gradually became more concerning.

There was no obvious reason for Holly to immediately suspect something was happening inside her brain. However, as her symptoms continued, medical investigations eventually revealed something far more serious.

Holly was diagnosed with a central neurocytoma, a rare type of tumour that usually develops deep within the brain’s ventricles.

For someone unfamiliar with this diagnosis, even understanding what a central neurocytoma is can be overwhelming.

The tumour’s rarity can add uncertainty, especially when trying to find other patients with similar experiences.

Receiving a Brain Tumour Diagnosis During the Pandemic

Holly’s experience was made particularly difficult by the restrictions in place during the COVID-19 pandemic.

Being diagnosed with a brain tumour is frightening enough, but having to receive important medical information without loved ones physically beside you can make the experience even harder.

Holly had to face parts of her diagnosis and treatment without the usual reassurance of having her family present.

Hospital restrictions also affected the support available around her operations.

These circumstances added another layer to an already difficult experience.

For many people who underwent brain tumour treatment during the pandemic, the absence of family members at important appointments and during hospital stays became a significant part of their story.

Holly’s experience is a reminder that the emotional effects of treatment are not limited to what happens medically.

Understanding Holly’s Inoperable Central Neurocytoma

Central neurocytomas usually develop within the ventricles, the fluid-filled spaces deep inside the brain.

Because of where these tumours grow, surgery can be particularly complicated.

Important brain structures may surround the tumour, and completely removing it is not always possible without risking damage to healthy brain tissue.

Holly has described her central neurocytoma as inoperable.

However, she also underwent operations to manage her condition and the complications associated with it.

This is an important distinction. A brain tumour being described as inoperable does not necessarily mean that no surgical procedure can be performed. Sometimes surgery is possible to manage symptoms or complications even when the tumour itself cannot be safely removed completely.

Every patient’s treatment depends on their individual circumstances.

Three Brain Surgeries and the Challenges That Followed

Holly underwent three operations as part of managing her brain tumour and the complications she experienced.

Brain surgery is a major event, but the operation itself is often only one part of the experience.

Recovery can bring challenges that were difficult to anticipate beforehand.

For Holly, the effects of her operations meant adjusting to changes in her health and everyday life.

Treatment and recovery require physical and emotional strength, but they also depend on the support available afterwards.

One of the most difficult parts of a brain tumour experience can be the uncertainty surrounding recovery.

How long will it take?

Will everything return to how it was before?

What happens if some of the difficulties remain?

These are questions many people affected by brain tumours find themselves facing, particularly when recovery does not follow a predictable path.

Recovering After Brain Tumour Surgery

Recovery after brain surgery is not always straightforward.

Some people experience physical difficulties, while others notice changes to their memory, concentration, energy levels or emotional wellbeing.

Holly’s experience highlights how important ongoing care can be following complex brain surgery.

The challenges of recovery are not always obvious to other people.

Someone may look well on the outside but still be dealing with fatigue, uncertainty, frustration or the emotional impact of what has happened.

For patients, this can mean adapting expectations and learning to approach everyday activities differently.

For families, it can mean understanding that recovery may continue long after someone has been discharged from hospital.

Holly’s story shows why support after treatment is just as important as the care provided during treatment.

The Importance of Family Support

Throughout her diagnosis, operations and recovery, Holly’s family played an important role.

When someone receives a brain tumour diagnosis, the impact reaches beyond the individual patient.

Partners, parents, children and other loved ones may suddenly find themselves adjusting to hospital appointments, changes in routine, uncertainty and new responsibilities.

The pandemic made this particularly challenging for Holly, because restrictions sometimes prevented her loved ones from being physically present.

Despite these difficulties, family support remained an important part of her experience.

Having people to turn to, share concerns with and rely upon during recovery can make a meaningful difference.

It is also important to remember that families may need support themselves.

Life After Surgery and Finding a New Normal

One of the biggest challenges after a brain tumour diagnosis can be working out what everyday life will look like.

There can be a strong desire to return to the life someone had before surgery, even when their body or circumstances have changed.

Holly has spoken about the process of returning to normality and adjusting to life following treatment.

Her journey has also included the happiness of expanding her family, despite the fears and uncertainty surrounding her health.

This is an important part of Holly’s story because it shows that life after a brain tumour diagnosis can continue to include meaningful experiences, relationships and family milestones.

There may still be appointments, concerns about the tumour and lasting effects from treatment.

But those experiences do not have to be the only things that define someone’s life.

Why Holly Wanted to Share Her Story

Central neurocytoma is a rare diagnosis, and finding somebody with the same type of brain tumour is not always easy.

For someone newly diagnosed, hearing another person’s experience can help make an unfamiliar condition feel less isolating.

Holly wanted to share her story as part of Brain Tumour Awareness Month.

By speaking about her diagnosis, operations, recovery and family life, she is helping other people understand the reality of living with a rare brain tumour.

Her experience also shows why awareness needs to include the difficulties people face after treatment, not simply the diagnosis itself.

Brain tumour stories are rarely straightforward.

There can be frightening moments, medical complications and emotional setbacks alongside family milestones, personal achievements and moments of happiness.

Every experience deserves to be heard.

What We Can Learn From Holly’s Experience

Holly’s experience raises several important points for people affected by brain tumours.

• Persistent or unexplained symptoms deserve medical attention.
• Rare brain tumour diagnoses may require specialist knowledge and individual treatment plans.
• Surgery does not always mean that a tumour can be completely removed.
• Recovery can involve physical, cognitive and emotional challenges.
• Families and carers can also need practical and emotional support.
• Sharing experiences can help others feel understood.

Most importantly, Holly’s story reminds us that the impact of a brain tumour can continue long after the initial diagnosis.

About Holly’s Tumour: What Is a Central Neurocytoma?

A central neurocytoma is a rare type of brain tumour that usually develops within the ventricles of the brain.

The ventricles are spaces containing cerebrospinal fluid (CSF), which helps cushion and protect the brain and spinal cord.

Central neurocytomas usually grow relatively slowly and are most often diagnosed in young adults. They are generally classified as WHO grade 2 tumours.

Although many central neurocytomas are considered low grade, they can still cause serious problems because of their location deep within the brain.

As a tumour grows, it may obstruct the normal flow of cerebrospinal fluid, leading to a condition called hydrocephalus, where fluid builds up in the brain.

This can increase pressure inside the skull and cause neurological symptoms.

What Are the Symptoms of a Central Neurocytoma?

Symptoms vary depending on the tumour’s size, location and whether it affects cerebrospinal fluid circulation.

Possible symptoms include:

• Persistent or worsening headaches
• Nausea and vomiting
• Blurred or double vision
• Changes in balance or coordination
• Dizziness
• Memory or concentration difficulties
• Seizures
• Weakness or other neurological changes

Not everyone experiences the same symptoms, and these problems can have many causes besides a brain tumour.

However, persistent or worsening neurological symptoms should be discussed with a healthcare professional.

How Is a Central Neurocytoma Treated?

Treatment depends on the size and location of the tumour, the symptoms it causes and whether it can be safely removed.

Brain surgery: When possible, surgeons may attempt to remove as much of the tumour as they can safely reach.

Radiotherapy: Radiotherapy may sometimes be recommended when tumour remains after surgery, grows again or cannot be safely removed.

Hydrocephalus treatment: If the tumour blocks cerebrospinal fluid circulation, additional procedures may be needed to relieve the pressure.

MRI monitoring: Regular scans may be used to monitor remaining tumour or look for changes following treatment.

Rehabilitation: Some patients may benefit from physiotherapy, occupational therapy, speech and language therapy or other specialist rehabilitation after surgery.

A central neurocytoma diagnosis does not automatically mean everyone will have the same treatment or outcome.

The treating neurosurgical and neuro-oncology teams are best placed to explain an individual’s options.

Support for People With Central Neurocytoma and Rare Brain Tumours

Finding support after a central neurocytoma diagnosis can be difficult, particularly when the condition is rare and there may be limited information from other patients.

Although not every organisation has resources specifically dedicated to central neurocytoma, several brain tumour charities offer useful information, emotional support and opportunities to connect with others.

The Brain Tumour Charity

Website: https://www.thebraintumourcharity.org/

The Brain Tumour Charity provides information and support for people affected by brain tumours, including those with rare diagnoses.

Their support team can help patients and families understand information about diagnosis, treatment, daily life and the support available.

UK support line: 0808 800 0004

Brainstrust

Website: https://brainstrust.org.uk/

Brainstrust offers personalised practical and emotional support to people living with brain tumours and their families.

They provide coaching, information and opportunities to meet others who understand the challenges of living with a brain tumour.

UK helpline: 01983 292 405

Brain Tumour Research

Website: https://braintumourresearch.org/

Brain Tumour Research campaigns for increased investment in brain tumour research and provides information about research and awareness activities.

Their resources may be useful for anyone interested in understanding more about brain tumours and developments in research.

Headway

Website: https://www.headway.org.uk/

Headway supports people affected by acquired brain injury, including those living with neurological difficulties after a brain tumour or brain surgery.

Their resources may help people dealing with changes to memory, concentration, fatigue and everyday independence.

Specialist Medical and Rehabilitation Support

People living with a central neurocytoma may also benefit from speaking to their healthcare team about:

• Specialist neuro-oncology or neurosurgical follow-up
• Physiotherapy and occupational therapy
• Neuropsychology and cognitive rehabilitation
• Emotional support and counselling
• Vision assessment where appropriate
• Support for family members and carers

For rare brain tumours, asking for a specialist opinion from a team experienced in treating unusual brain tumours can also be helpful.

Holly’s Message

Holly’s central neurocytoma story is about much more than a diagnosis.

It is about dealing with unexpected symptoms, navigating major medical treatment during a pandemic and adjusting to the realities of life after brain surgery.

It is also about family, support and finding a way forward while living with uncertainty.

By sharing her experience, Holly is helping others understand that even when a brain tumour is rare, the people living with it deserve information, specialist care and a community that understands.

Every brain tumour story matters, and every voice deserves to be heard.