Sian’s story

Low grade , Patient stories

Living with the uncertainty of a brain tumour diagnosis

Sian’s busy life, working as a healthcare assistant, running her own small baking business and being a devoted mum of two young children, changed suddenly when a brain tumour was discovered during tests for an unrelated eye condition. Experiencing no symptoms from the tumour, she explains how she discovered she had been “walking around with this thing in my head for the last 10 years”.

How it began

Early in January 2024, I had a flare-up of scleritis in my eye, which is caused by an autoimmune disease. I saw my GP, who thought I’d possibly had a stroke (though I knew I hadn’t) and sent me to hospital by ambulance.

A cannula was shoved in my arm (I hate needles!) and tests followed, including a CT head scan. After a lot of waiting, the doctor came round and advised me that there was an area on my brain which had also shown up on a CT scan in 2014, but was now appearing slightly bigger (possible fluid). So they advised I needed to come back on Friday for an MRI.

12 January 2024 – MRI day

On the Friday, I headed in for the MRI. It was a horrible feeling, and so loud, lasting around 25 minutes. After two and a half hours of waiting for the results, I was called in and greeted by a lovely doctor, who confirmed that I hadn’t had a stroke, but she needed the neurologist to look at my results and discuss them with us.

A bit more waiting, and we saw the neurologist, who said: “You have definitely not had a stroke, but I’m afraid you have a brain tumour.”

Just like that, our whole world came crashing down. I felt numb. I burst into tears.

He advised me that I would need a full-body CT scan of my chest, pelvis and abdomen, as he thought it was a primary tumour, but they needed to rule anything else out before they could discuss my treatment options.

He reassured me: “It’s not aggressive; it’s a good one to have.”

20 January – Scan and plan for surgery

A week later, the full-body CT scan was done, and a couple of days after that I had a meeting with my neurosurgeon and two specialist nurses at neuro-oncology.

I’d been diagnosed with a low-grade glioma and, having discussed it at an MDT meeting, they felt the best solution would be craniotomy surgery. Once the tumour was removed, they could then do a biopsy to see whether or not it was cancerous. If they couldn’t remove it all safely, I might then need chemotherapy or radiotherapy.

15 February – More tests

To prepare for surgery, I had another MRI so that my surgeon could plan the route of surgery, and a neuropsychology test lasting two and a half hours to see whether the tumour was affecting my memory or speech.

16 February – The best news

The day after, my specialist nurse rang to say my full-body scan was clear.

The best news we could ever have hoped for – lots of happy tears. Now we knew what we were dealing with and it had to go. I was awaiting an appointment with my surgeon to discuss surgery.

25 February – Hope in tomorrow

Tomorrow, I have a call with a Support Professional from Brain Tumour Support. I’m still waiting for the results from my last MRI scan and the report from my neuropsychology test; then it will be a meeting at neuro-oncology to discuss surgery with my neurosurgeon.

Tomorrow’s a new day…

10 March – Waiting to see my surgeon

It’s been five weeks since I’ve been able to drive. Losing your driving licence can feel like losing your independence and freedom. It can impact your work and leisure, isolate you from family and friends, and turn simple everyday tasks that we take for granted into difficulties.

I have felt like a burden asking family and friends to drive me places. It can turn your life upside down.

My appointment with my surgeon is on Monday. I’m not gonna lie, I’m nervous – nervous about what they will say, and I’m scared I’m going to get a surgery date. Surgery scares the hell out of me, but it needs to happen.

11 March – Not the best news

So my hospital appointment didn’t go quite to plan. I thought I was going in to discuss surgery and hopefully find out a date. That’s not the case right now.

The results came back from my more detailed MRI, which they use to plan surgery. It takes slice images of my whole brain, from top to bottom, to give a full view of where the tumour is situated.

They could see that it was in the hippocampus area of my brain – my memory area. He told me that the hippocampus is shaped like a seahorse’s tail, and the tumour is following all the way through my hippocampus and has intertwined itself into my brain.

They now think it is not the original low-grade glioma they had thought, but possibly one of three different types of tumour – Astrocytoma, DNET or Ganglioglioma.

They do not want to operate right now because of the risks and implications. I could lose 50–55% of my memory function, and they are also looking at what my quality of life would be after surgery.

They cannot give me chemotherapy or radiotherapy without a diagnosis of what the tumour is. They also cannot do a biopsy because the shape of the tumour means they may not be able to collect enough tissue to get a conclusive result. The biopsy operation would still carry the high risk of me losing 50–55% of my memory function, hugely impacting my life here and now.

So I’m being put under MRI surveillance every three to six months to watch and see what this thing does. It’s not the best news and I’m not dealing with it well right now.

Everything that happened Monday was a complete shock and the opposite of what we thought was going to happen from my last appointment.

I need to learn to live with this new information and this “thing” in my head. It’s very raw.

19 March – Learning to carry on

It’s a really rubbish position to be in, and I’ll admit I am not OK. But things get easier with time, right? I need to learn to “carry on as normal”.

I’ve been told I am allowed to drive again once the DVLA sort everything at their end, which will give me my freedom back and allow me to go back to my job.

Every day is a new day.

27 March – Every emotion

We are now two weeks on from finding out that surgery is not going ahead because the risk of me losing 50–55% of my memory is too high.

I’ve had good days, great days, days where I go a few hours without thinking about the tumour, days when all I think about is the tumour, bad days, awful days, tears. I think I’ve been through every emotion these last two weeks.

30 April – Scanxiety

Tomorrow is my first three-month MRI scan.

I’m starting to feel all the nerves. I also won’t get my results back for six to eight weeks, which I think is going to be the hardest part…the waiting.

I’ve been quite lucky up until now with getting results super quickly, but from now on, being under surveillance, the results will take a lot longer to come back.

I will also get called into clinic to discuss my scan results. My nurse said this can continue for as long as I wish; she said I might get to a point where I don’t want to come in anymore and just want a phone call or a letter. I guess over time these routine scans and appointments become the “norm”.

Now to try and calm my nerves for the next few weeks and keep myself busy.

1 May – The wait

And that’s my MRI done!

Another cannula in my arm. My MRI was with contrast dye, which they insert into your body via a cannula to make certain tissues and blood vessels show up more clearly and in greater detail.

The MRI was 25 minutes. It was super loud and claustrophobic…but it’s done.

Now to wait five to six weeks for my results.

15 July – Waiting over

Results day. My neurologist compared my most recent scan in May with my scan in January and there has been absolutely no change in six months – no growth, no changes, no concerns.

It’s stable.

He now wants me to have six-monthly scans rather than three-monthly, so we’re looking at November for the next scan.

The relief is massive. I’ve been terrified for 11 weeks waiting for those results.

Now let’s hope this tumour stays as it is and my results will be the same come December.

25 August – Behind a brave face

Some days I wake up and completely forget that I have a brain tumour; it takes me a few hours to think, “Oh yeh s***, that’s in my head.” Some days I wake up, and it’s the first thing I think about.

Being busy and having distractions massively help, whether it’s work, family days out or baking. I always try and do something to take my mind off “it”, but these things don’t always work.

Having this diagnosis has massively made me realise who the important people in my life are – the ones who have shown up, checked on me and have been there for me since my diagnosis. I appreciate every single one of you, and always will.

I think what I’m trying to say is just because when you see me, I’m all smiles and trying to put on a brave face, this isn’t always the case. Some days the emotions take over and it’s OK to have a rant and a cry – I’ve learnt that this is normal and sometimes makes you feel better.

3 November – Emotional rollercoaster

Tuesday is my six-monthly routine MRI brain scan.

The last week, my emotions have been all over the place. I hate all the scared and worried emotions that reappear when my scans are due. It’s not only worrying about the scan; it’s the agonising wait for weeks and weeks for the results. My anxiety soars through the roof.

But what I have learnt on this journey is that I am stronger than I knew and that I have lots of people in my life who love and care for me.

I’ve got this!

12 January 2025 – A year’s perspective

Today marks one whole year since my brain tumour diagnosis.

Throughout this journey, I’ve had overwhelming support from family and friends. My partner, mum, dad, sister and friends – without them, I would be completely lost.

I have the most amazing neuro-oncologist and team of incredible nurses. I’ve also been supported by the wonderful Brain Tumour Support charity, which is why I’ve chosen to give something back and raise money for them; their support in helping people like me is massive.

For now, I’m continuing with regular six-monthly MRI scans, continuing to try and be positive (trust me, I have my bad days), continuing to raise awareness and holding charitable events to raise as much money as I possibly can.

When you get a brain tumour diagnosis, you learn two things:

You are stronger than you imagined and you are loved more than you know.

Sian Norman | March 2025