Jane’s Thalamic Glioma Story

There are moments in life that divide everything into before and after.

For Jane, that moment came early one morning—just a message, an appointment, something that didn’t seem extraordinary at the time. What began as a routine conversation about symptoms quickly became something else entirely.

By the time she left, everything had changed.

She walked out having been told she had a brain tumour.

Jane’s Brain Tumour Diagnosis and Life on Watch & Wait

When Jane went to see her GP at the start of the year, she thought she was dealing with symptoms of perimenopause.

Like many women, she had been encouraged by the growing conversation around menopause and hormone health, and wanted to explore whether HRT might help. A brain tumour was the very last thing on her mind.

But during the appointment, her GP became concerned about Jane’s memory symptoms and referred her for a CT scan.

At the time, Jane was not especially worried.

Three weeks passed without any news, and she assumed that was a good sign. Then, on 21 March, everything changed.

At 7.30 in the morning, she received a text asking her to come urgently to the GP surgery to discuss her scan results.

“I remember thinking, that doesn’t sound good,” Jane says.

She took her husband, Simon, with her. At first, she planned for him to stay in the waiting room, but at the last minute, she asked him to come in with her.

In the consultation room, Jane was told that abnormalities had been found in her brain. Doctors initially believed there were two tumours and that it could be a multifocal glioma. She was told she would need an MRI scan and that brain surgery, radiotherapy and chemotherapy might all be ahead of her.

“How is this happening? I didn’t feel that unwell.”

“It was devastating,” she says. “We walked out of the surgery in a complete blur.”

Outside the GP practice, Jane and Simon stood holding each other tightly as they both sobbed.

“I didn’t care who saw,” she says. “I just kept thinking, how is this happening? I didn’t feel that unwell. I couldn’t believe what I was hearing.”

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

A few weeks later, Jane met with a surgeon and finally received some better news: there was only one tumour, not two.

That meant it was no longer thought to be a multifocal glioma. But there was still huge uncertainty. The tumour was in Jane’s thalamus, a deep and highly sensitive part of the brain that acts as a central relay point for signals travelling in and out.

Because of the location, surgery to remove it was ruled out.

“I knew in that moment that my odds had reduced quite significantly,” Jane says. “That was frightening.”

A biopsy was offered as a possible next step, but it came with serious risks. Jane describes the consultation as overwhelming, with the dangers of surgery explained in such stark detail that she and Simon were left frozen with fear.

At first, it felt as though there was no real choice. She would simply have to be brave and go through treatment.

But after speaking to an oncologist, talking with family and friends, and doing her own research, Jane began to feel that active surveillance might be the right option for now.

Today, Jane is being monitored with MRI scans every three months.

Doctors believe the tumour is likely to be low-grade. It is not currently showing signs of swelling or aggressive behaviour, which is reassuring. But because Jane has not had a biopsy, there is still no definitive diagnosis.

That uncertainty is one of the hardest parts.

“I don’t know exactly what tumour type I have,” she says. “I’ve heard a couple of different opinions, so I’m not quite sure what lane I’m in.”

For now, active surveillance means no treatment unless the tumour changes, symptoms appear, or Jane decides she wants to pursue a biopsy.

But living in a “watch and wait” situation brings its own emotional strain.

Because she has not had seizures and is not experiencing symptoms directly linked to the tumour, Jane often feels caught between being told she has a brain tumour and yet not actively “doing” anything about it.

That can make every small ache, twinge or headache feel loaded with meaning.

“Every little thing makes you think, it’s coming, it’s coming. You have to work really hard not to let those thoughts take over.” she says.

The scans themselves bring both stress and relief. In some ways, Jane says she almost looks forward to them, because a clear result gives her precious reassurance for a while. But as the next scan approaches, the fear begins to creep back in.

Finding support that truly understands

Jane says support from brain tumour charities has made an enormous difference to her and her family.

She reached out to a brain tumour charity advice line in one of her darkest moments and found comfort in speaking to someone who truly understood.

“Sometimes it’s not even about being emotional,” she says. “It’s just about talking to someone who gets it. You have to understand how awful having a brain tumour is, and only people who either have it or work in that field really do.”

She has also had formal counselling, which she describes as incredibly helpful.

That support extended beyond Jane herself. With a 10-year-old daughter at home, Jane and Simon faced the heartbreaking task of explaining the diagnosis in a way their child could understand. Specialist support helped guide those conversations and gave them confidence in how to handle such a difficult situation.

Further counselling and play therapy for their daughter has also been invaluable.

Jane is clear that, without the help of these charities, her family would not have got through the past year in the same way.

“They’ve been amazing,” she says. “They’ve helped our family so much.”

Turning pain into purpose

Rather than let the anniversary of her diagnosis be defined only by fear, Jane has chosen to turn it into something joyful.

On 21 March 2026, one year on from the day her world changed, she held a charity concert at St Andrew’s Church in Backwell, North Somerset.

The event that celebrated Jane’s love of 90s and noughties dance music, reimagined with an orchestral twist.

Think club classics, disco lights, a red carpet, a big disco ball, drinks, dressing up, and a village church transformed for one unforgettable night.

“It was a bit unusual for a church,” Jane laughs. “But somehow I managed to persuade the vicar.”

Planning the concert was more than fundraising. It was a lifeline.

“It had given me a really good distraction from everything I’ve been going through,” she says. “This was another form of therapy for me.”

She has also found strength in speaking openly online, using Instagram and video diaries to document her experience and connect with others.

“This isn’t who I thought I was,” she says. “But it’s who I need to be right now.”

Love in the trenches

When Jane reflects on who has carried her through this experience, her answer is immediate: her husband, Simon.

“I don’t know how he’s got through it, if I’m honest,” she says. “If it was the other way round, I think I’d be a complete wreck.”

She describes clinging to him, crying into him, and leaning on him in ways she never had before. Through it all, he has stayed by her side, gone to every appointment, absorbed every fear, and stood in the trenches with her.

“It feels like we both have the tumour,” she says.

And amid all the shock, grief and uncertainty, Jane says there has also been one unexpected silver lining: a deeper understanding of just how loved she is.

“I’ve realised how much he loves me,” she says. “And that’s pretty special.”

Follow Jane on Instagram @memybraintumourandi. Where she shares her video diaries.

Jane’s story is a reminder that brain tumours do not always present in obvious ways. Symptoms can sometimes be vague and may be mistaken for other health issues.

It is also a reminder that:

• Every brain tumour journey is different
• Not all tumours can be operated on
• “Watch and wait” can be an active and appropriate treatment plan
• Emotional support matters just as much as medical care
• Specialist charities can make a life-changing difference for patients and families

Behind every diagnosis is a person, a family, and a life that changes in an instant.

Jane’s story shows the reality of living with uncertainty, but also the power of support, honesty, community and finding purpose even in the most difficult circumstances.

Here is Jane’s next challenge coming soon 

Running 21k on the 19th April

Follow Jane on Instagram @memybraintumourandi where she shares her life with us.

 

If you have been diagnosed with a Thalamic Glioma. Here is some helpful informations

Understanding Thalamic Glioma:

Jane’s tumour is believed to be a thalamic glioma. That means it is a glioma located in the thalamus, a deep part of the brain.

What is the thalamus?

The thalamus is a small but very important structure near the centre of the brain. It acts a bit like a relay station, helping to pass information between different parts of the brain and body. It plays a role in things like:

• movement
• sensation
• alertness
• sleep
• memory and thinking

Because the thalamus sits so deep in the brain and is involved in many vital functions, tumours in this area can be especially difficult to treat with surgery.

What is a glioma?

A glioma is a type of brain tumour that starts in the brain’s glial cells. These are the cells that support and protect nerve cells.

Gliomas can behave very differently from one person to another. Some are low grade, meaning they tend to grow more slowly. Others are high grade, meaning they are more aggressive and faster growing.

In Jane’s case, doctors believe the tumour is likely to be low grade, which is reassuring, but because she has not had a biopsy, there is still some uncertainty about the exact tumour type.

Why might surgery not be possible?

One of the biggest challenges with a thalamic glioma is its location.

Even when a tumour is small or appears slow growing, operating in the thalamus can carry a significant risk because this part of the brain is surrounded by structures that control essential functions. For some patients, surgery to remove the tumour is not possible, and doctors may instead consider:

• biopsy
• radiotherapy
• chemotherapy
• active surveillance with regular scans

The right option depends on the tumour’s size, position, behaviour, symptoms, and the risks of treatment.

What does “active surveillance” mean?

Active surveillance — sometimes called watch and wait — means doctors monitor the tumour closely with regular MRI scans instead of starting treatment straight away.

This approach may be recommended when:

• The tumour appears low-grade
• it is not currently causing significant symptoms
• treatment risks may outweigh the benefits at that stage
• doctors want to monitor whether the tumour changes over time

Active surveillance does not mean nothing is happening. It means the medical team is carefully watching for any sign that the tumour is growing or changing.

Why uncertainty can be so difficult

One of the hardest parts of a brain tumour diagnosis can be the not knowing.

Some people have a clear diagnosis after surgery or biopsy. Others, like Jane, may live with uncertainty about the exact tumour type while scans continue. That uncertainty can have a huge emotional impact, especially when someone is feeling physically quite well but living with the knowledge that a brain tumour is there.

Read More Glioma Brain Tumour Stories

Read more personal Glioma stories on Aunty M Brain Tumours

Every glioma story is different.

Some people are diagnosed after experiencing symptoms, while others discover their brain tumour unexpectedly during a scan.

Some have surgery, radiotherapy or chemotherapy. Others, like Jane, may be monitored with regular MRI scans because immediate treatment is not considered the best option.

You can read more personal experiences of people living with different types of glioma, including thalamic glioma, brainstem glioma and optic pathway glioma.

If You Have Recently Been Diagnosed With a Thalamic Glioma

If you have landed on this page after being told you have a thalamic glioma, or a suspected glioma in the thalamus, please know you are not alone.

Being diagnosed with a brain tumour can be frightening, particularly when it is located deep within the brain and surgery may not be possible or advisable.

You may have been given a treatment plan, or you may have been told that your medical team recommends Watch and Wait, also called active monitoring or active surveillance.

This can be difficult to understand.

You know there is something in your brain, yet you are being told that the safest approach for now may be regular scans rather than immediate treatment.

It is natural to feel worried, frustrated or uncertain about what happens next.

Watch and Wait does not mean that your medical team is doing nothing.

It means your tumour is being monitored through MRI scans and specialist appointments so that any important changes can be identified and your treatment plan reviewed if necessary.

Not everyone with a thalamic glioma will be offered active monitoring. The decision depends on the tumour’s appearance, location, symptoms, likely behaviour and the risks and benefits of available investigations or treatments.

Some people remain on active monitoring for years. Others may need treatment if their tumour changes or symptoms develop.

Try not to compare your journey too closely with anyone else’s.

Reading personal experiences like Jane’s can offer comfort and understanding, but another person’s diagnosis or outcome does not determine what will happen to you.

Take things at your own pace, ask questions and remember that you do not have to face this journey alone.

Living With Watch and Wait: Coping With Scan Anxiety

For many people, one of the hardest parts of active monitoring is living with uncertainty.

You may feel relatively well, but knowing you have a brain tumour can change the way you think about everyday symptoms.

A headache, a moment of forgetfulness or an unfamiliar sensation may suddenly feel frightening.

As your next MRI scan approaches, you may find yourself worrying about what the results will show.

This is sometimes called scanxiety, or scan anxiety.

Jane spoke openly about how difficult this can be.

There are things that may help:

• Ask your medical team when your next MRI scan will take place and how you will receive the results.
• Keep a note of new or changing symptoms so you can discuss them with your specialist.
• Talk to someone you trust about your worries rather than keeping everything to yourself.
• Consider counselling or support groups if the uncertainty is affecting your wellbeing.
• Find activities that help you enjoy everyday life between appointments.

You do not have to pretend that waiting is easy.

And you do not have to wait until your next scheduled scan to report new or worsening neurological symptoms. Contact your specialist team for advice.

Where to Go After a Thalamic Glioma Diagnosis?

If you or someone you care about has been diagnosed with a thalamic glioma, there are organisations offering reliable information, emotional support, practical advice and opportunities to connect with others.

The Brain Tumour Charity

Provides information about gliomas, brain tumour diagnosis, treatment options and living with a brain tumour.

It also offers support services for patients, families and carers, including those who are on active monitoring.

Visit The Brain Tumour Charity

Read its information about Watch and Wait

Brainstrust

A UK brain tumour charity providing practical and emotional support for people living with a brain tumour.

Brainstrust offers individual support, coaching, information and opportunities to connect with others.

It also provides helpful resources about coping with scan anxiety and the uncertainty of waiting for MRI results.

Visit Brainstrust

Read Brainstrust’s advice on scanxiety

Brain Tumour Support

A UK charity providing emotional and practical support for anyone affected by a brain tumour, including patients, families, carers and loved ones.

It offers opportunities to connect with others and receive support during diagnosis, treatment, recovery or ongoing monitoring.

Visit Brain Tumour Support

Brain Tumour Research

Funds scientific research into brain tumours and campaigns for greater awareness and investment.

Its work aims to improve understanding, develop more effective treatments and ultimately find cures for different types of brain tumours.

Visit Brain Tumour Research

Cancer Research UK

Provides information about brain tumours, treatment decisions and active monitoring.

Its guidance explains why some brain tumours may be monitored rather than treated immediately and what changes may lead specialists to review the treatment plan.

Visit Cancer Research UK

Read about brain tumour treatment decisions

NHS Neuro-Oncology and Rehabilitation Services

Your specialist medical team can help you understand your individual diagnosis, the reasons for active monitoring and what might lead to a change in your treatment plan.

Depending on your needs, you may also benefit from:

• A clinical nurse specialist for questions and ongoing support
• Counselling or psychological support for anxiety and uncertainty
• Neurology services for seizures or other neurological symptoms
• Neuropsychology support for memory, concentration or cognitive difficulties
• Physiotherapy or occupational therapy if symptoms affect daily activities

Ask your GP, specialist nurse or neuro-oncology team about appropriate referrals.

Would You Like to Share Your Glioma Story?

At Aunty M Brain Tumours, I believe every person’s experience deserves to be heard.

You do not have to have undergone brain surgery, radiotherapy or chemotherapy for your story to matter.

Living with a brain tumour while on Watch and Wait can bring its own challenges, particularly when you are trying to carry on with everyday life while facing uncertainty about the future.

Whether you have recently been diagnosed, are being monitored with regular MRI scans, have undergone treatment or are supporting someone you love, your experiences could help another person feel less alone.

Find out how to share your brain tumour story.

Medical disclaimer: This information is intended for general awareness and peer support. It does not replace individual medical advice from your specialist healthcare team.

 

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