Brain Tumour Diagnosis After 8 Doctor Visits

Listen to Nicole Phillips and, Lorraine Bateman tell Nicole’s story in full in the Aunty M Brain Tumours Talk Show interview below, or keep reading for the written version

Eight Doctor Visits, Emergency Brain Surgery and Life with Epilepsy

For six months, Nichole had been feeling increasingly unwell. She was experiencing severe headaches, confusion, memory problems and difficulty walking. Despite visiting her doctor eight times, nobody had identified what was happening. Then, one day, she collapsed.

Nichole was rushed into hospital, where doctors discovered a brain tumour approximately the size of an orange.

At the time, she was also a new mother. Her daughter was just six months old when Nichole’s health deteriorated to the point that she needed emergency medical attention.

The diagnosis led to a nine-hour brain operation and a recovery that would leave her living with epilepsy and significant short-term memory difficulties.

But Nichole’s story doesn’t end with surgery.

During our interview for Aunty M Brain Tumours, she explained how her experience inspired her to raise awareness of brain tumours and fundraise for Brain Tumour Research, raising more than £25,000 by the time we spoke.

This is her story of missed symptoms, brain surgery, hidden disabilities and turning a life-changing diagnosis into something that could help others.

Six Months of Symptoms Before a Brain Tumour Diagnosis

Before her diagnosis, Nichole knew very little about brain tumours.

She had been feeling unwell for approximately six months, but the changes in her health were gradual.

Looking back, she recognised that there had been several warning signs, including feeling low, becoming increasingly confused and struggling to remember things.

What made the situation particularly complicated was that Nichole had recently given birth.

Some of her symptoms were initially associated with postnatal depression.

She described feeling unlike herself. She wasn’t as alert or quick-thinking as usual, and her ability to concentrate seemed to be deteriorating.

However, because the changes happened gradually, the seriousness of what was happening wasn’t immediately recognised.

As time passed, additional physical symptoms began to appear.

Severe Headaches, Balance Problems and Confusion

One of Nichole’s most troubling symptoms was the severity of her headaches.

These weren’t occasional headaches. She described intense, throbbing pain that became increasingly difficult to tolerate.

Her balance was also affected.

She struggled to walk in a straight line and sometimes felt as though she was drunk when walking, despite not having been drinking.

Her confusion and forgetfulness became more noticeable, too.

As her condition worsened, Nichole began experiencing something particularly frightening.

She could hear music playing in her head.

During our interview, she remembered hearing Lily Allen’s song Alfie. The music was extremely loud and vivid to her, even though it wasn’t coming from anything around her.

It became so distressing that she contacted her doctor in tears, trying to explain what she was experiencing.

Nichole recalled being asked whether she had been drinking alcohol or taking drugs.

Although she acknowledged how difficult these symptoms must have been for the doctors to interpret, the experience left her feeling frightened and unsure where else to turn for help.

She had already visited her doctor eight times.

And she still didn’t have an explanation.

The Day Nichole Collapsed

Eventually, Nichole’s condition became so serious that she collapsed.

She was rushed to hospital, where doctors investigated what was causing her symptoms.

What they discovered was far more serious than she had imagined.

Nichole had a large brain tumour, approximately the size of an orange.

She was transferred to the Royal Free Hospital in London for specialist treatment.

Doctors explained that she had what they described as a benign grade 1 tumour.

Although that was reassuring in terms of the tumour’s classification, its size and the symptoms it was causing meant that surgery was necessary.

Nichole had gone from not knowing anything about brain tumours to being told that she needed a major operation on her brain.

All while caring for a very young daughter.

Preparing for a Nine-Hour Brain Operation

Because of the tumour’s size, Nichole needed surgery relatively quickly.

Before the operation, she spent approximately a week taking steroids to help reduce swelling.

She then underwent a nine-hour brain operation.

As with any major brain surgery, there were significant risks.

Nichole recalled being warned that she could wake up with serious neurological difficulties, including paralysis, speech problems or loss of vision.

These possibilities were frightening, but the operation was necessary.

After months of deteriorating health and uncertainty, she was finally receiving treatment for the tumour that had been causing her symptoms.

Waking Up After Brain Surgery

One of the most memorable moments in Nichole’s interview was hearing her describe waking up after the operation.

Despite the risks she had been warned about, she remembered being awake and mentally alert.

She spent two days in intensive care before being transferred to a general ward.

During her hospital stay, Nichole also became aware of how seriously ill some of the patients around her were.

She remembered one patient who sadly died and another who was extremely unwell.

It was a sobering experience.

Although she was recovering from major surgery herself, she was also witnessing the difficult realities faced by other patients and their families.

After two days in intensive care, Nichole was keen to move to a normal ward and continue her recovery.

But while the operation had dealt with the immediate crisis, her experience would have lasting consequences.

Living with Epilepsy After Brain Tumour Surgery

Following her brain surgery, Nichole was left living with epilepsy.

She explained that she needed to take considerable medication to help manage the condition.

Epilepsy can develop in people affected by brain tumours, and some patients continue to experience seizures even after surgery.

For Nichole, it became one of the long-term effects of her diagnosis and treatment.

However, epilepsy wasn’t the only challenge she faced.

She also experienced significant problems with her short-term memory.

And, as she explained during our conversation, this affected everyday life in ways that other people might not immediately understand.

The Hidden Impact of Short-Term Memory Loss

Nichole described her long-term memory as being largely unaffected.

She could remember things from years earlier, but retaining new information was much more difficult.

Remembering people’s names was a particular challenge.

Unless she could connect a name with a strong mental image, she found it difficult to recall.

To help herself, Nichole developed a technique involving visual associations.

Rather than simply trying to remember a name, she would turn it into an amusing picture in her mind.

One example involved a friend called Teresa.

By associating the name with Mother Teresa, she found it easier to remember.

Her friend also helped her create a memorable image for her surname.

These unusual, sometimes comical mental pictures became a practical way of working around her memory difficulties.

What I found particularly interesting was that Nichole wasn’t simply describing the problem. She was explaining how she had learned to adapt.

Memory problems after brain surgery can be incredibly frustrating, particularly when they affect ordinary interactions that other people take for granted.

For Nichole, creating these associations helped her feel more confident about remembering new information.

It also highlighted how much effort can be involved in managing a difficulty that is largely invisible to everyone else.

Why Nichole Wanted to Raise Brain Tumour Awareness

After everything she had experienced, Nichole developed a strong desire to help other people.

Before her own diagnosis, she hadn’t realised how many lives were affected by brain tumours.

She also hadn’t recognised the possible symptoms.

Looking back at her own experience, particularly the months of confusion and repeated visits to the doctor, she wanted other people to become more aware of what to look out for.

Her motivation was simple.

She wanted people to know that brain tumours exist, that the symptoms can be varied, and that they can affect people of different ages.

Nichole also wanted greater awareness of the need for research funding.

She spoke about how surprised she had been to learn about the impact of brain tumours, particularly among children and younger adults.

For her, raising awareness wasn’t just about sharing her own story.

It was about making sure that others might recognise concerning symptoms and seek appropriate medical attention.

Supporting Brain Tumour Research

Nichole decided to direct her fundraising towards Brain Tumour Research, the UK charity working to increase research funding and improve outcomes for people affected by brain tumours.

She explained that becoming involved with the charity gave her access to resources and support for her fundraising activities.

This was particularly important because she continued to experience cognitive difficulties following surgery.

Working alongside an established charity meant she could focus on raising money and awareness while supporting research she believed in.

Nichole was passionate about ensuring that the money she raised contributed to meaningful research.

She spoke enthusiastically about the scientists and research laboratories working to understand brain tumours and develop better treatments.

Her experiences had given her a personal understanding of why that work mattered.

Raising More Than £25,000 for Brain Tumour Research

One of the achievements we discussed during the interview was Nichole’s fundraising.

By the time of our conversation, she had helped raise more than £25,000 for Brain Tumour Research.

That is an extraordinary achievement.

Nichole explained how fundraising milestones were recognised by the charity through commemorative tiles displayed on a Wall of Hope at its research centres.

Seeing these tiles was particularly meaningful to her.

They represented not only the money raised but the collective effort to support scientists searching for better treatments.

She was proud to have several tiles recognising her fundraising efforts.

For somebody who had once known so little about brain tumours, becoming actively involved in fundraising and awareness was a significant change.

Her diagnosis had completely altered her life, but she had found a way to use that experience to make a difference for others.

Why Sharing Brain Tumour Stories Matters

During our interview, something that stood out to me was how quickly Nichole’s life had changed.

She had been a young mother experiencing symptoms that were difficult to explain.

She had visited her doctor repeatedly, trying to understand why she felt so unwell.

Eventually, those symptoms became so serious that she collapsed and needed urgent hospital treatment.

Then came the diagnosis, a nine-hour brain operation and the long-term effects she would have to learn to live with.

But what also stood out was her determination to do something positive for the brain tumour community.

She wanted to make more people aware of the symptoms.

She wanted others to understand that brain tumours aren’t always immediately recognised.

And she wanted to support the research that could one day lead to better treatments.

Nichole’s story is an important reminder that a brain tumour diagnosis doesn’t end when somebody leaves hospital.

For many people, the effects continue long afterwards.

Epilepsy, memory problems and other neurological changes can become part of everyday life.

These effects may not always be visible, but they are very real.

My Thoughts on Nichole’s Story

One of the reasons I continue sharing people’s brain tumour experiences is because there is so much more to a diagnosis than the tumour itself.

When we hear that somebody has undergone brain surgery, we naturally want to know whether the operation was successful and how they are recovering.

But what about everything that happens afterwards?

What about the epilepsy, the memory difficulties, the medication and having to find new ways to manage everyday situations?

These are the things that often don’t get talked about enough.

What struck me about Nichole’s interview was how she described her symptoms before the diagnosis.

She knew something wasn’t right, yet she struggled for months to get answers.

I also found her memory techniques fascinating. The way she learned to associate names with funny images showed just how creative people can become when adapting to changes after brain surgery.

And then there is her fundraising.

To go through something so frightening and use that experience to raise more than £25,000 for brain tumour research is something worth recognising.

Not everyone feels able to fundraise or campaign after a diagnosis, and nobody should feel they have to. But for Nichole, raising awareness gave her something meaningful to focus on.

I hope sharing her experience encourages more conversations about the symptoms of brain tumours, the long-term effects of brain surgery and the importance of listening to people when they say something isn’t right.

Thank you, Nichole, for sharing your experience with me and the Aunty M Brain Tumours community.

Claire x

Understanding Brain Tumour Symptoms

Brain tumour symptoms can vary considerably depending on the tumour’s size, location and how it affects surrounding brain tissue.

Some people experience gradual changes, while others develop symptoms more suddenly.

Possible symptoms include:

Persistent or worsening headaches
Nausea or vomiting
Problems with balance and coordination
Changes in memory or concentration
Confusion or changes in behaviour
Visual disturbances
Seizures
Speech or hearing difficulties

These symptoms can have many causes and do not automatically mean somebody has a brain tumour.

However, persistent, progressive or unexplained neurological symptoms should be assessed by a healthcare professional. A first seizure, sudden loss of consciousness or other acute neurological emergency requires urgent medical attention.

Nichole’s experience also highlights why changes in concentration, mood and memory shouldn’t automatically be dismissed, particularly when other neurological symptoms are present.

Brain Tumours and Epilepsy

Some people diagnosed with a brain tumour also develop epilepsy.

Seizures occur when there is abnormal electrical activity in the brain. They can cause convulsions, unusual sensations, changes in awareness or other neurological symptoms.

Not all seizures involve losing consciousness or shaking.

The exact effects depend on which part of the brain is involved.

Treatment may include anti-seizure medication and management of the underlying tumour.

People experiencing seizures or suspected epilepsy should seek specialist medical advice.

Memory Problems Following Brain Surgery

Memory and concentration difficulties can occur following a brain tumour diagnosis or treatment.

These problems may affect short-term memory, attention, processing information or recalling words and names.

Some people benefit from practical strategies such as written reminders, routines, phone alerts and visual memory techniques.

Others may benefit from specialist cognitive rehabilitation.

The type and severity of difficulties vary from person to person, so support should be tailored to individual needs.

Medical information in this article is provided for general awareness and is not a substitute for professional medical advice.

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