Glynis, a 73-year-old mother and grandmother from Chepstow, Monmouthshire in Wales, became aware of unsettling symptoms in Autumn of 2022. Glynis began noticing a disconnection from her surroundings, where people appeared distant and her perception of the world felt altered. Initially, she couldn't pinpoint the cause and hesitated to consult a doctor. Over time, her symptoms intensified, leading her to seek medical advice.
After a CT scan at Royal Gwent Hospital in Newport and an MRI at the Grange University Hospital in Cwmbran, Glynis was diagnosed with a Grade 2 meningioma. This benign tumour, though non-cancerous, was pressing against her brain, causing significant neurological symptoms. The diagnosis was a shock, leaving her with numerous questions and concerns about the future. Now in remission Glynis is adjusting to life and the lasting impact of brain surgery.
Glynis tells her story…
I was 73 when my world started to feel very different in ways I couldn’t articulate. For some months I’d been noticing that the world seemed different. I could see people talking to me, but it felt like I wasn’t there, like there was a distance between us. Sometimes faces looked contorted which was scary. I felt like I wasn’t in sync with the world.
At the time, I didn’t rush to the doctor. It was hard to put into words what I was feeling. It wasn’t pain, just a sense that something wasn’t right. And oddly I started seeing things more intensely, like a tree that suddenly seemed to scream significance. But I worried that I would be wasting the GP’s time making an appointment to mumble something about feeling odd and seeing trees in an odd way.
It was January 2023 when things finally came to a head. It was Burns Night when I had a complete blank-out. I came round and carried on because that weekend I was directing a local panto; I didn’t want to let people down. I mean, the show must go on... But a good friend insisted I see the GP. With some reluctance, I went. The doctor ruled out a stroke but arranged a CT scan at Royal Gwent Hospital in Newport. After that, everything moved quickly. I was told to stop driving and following an MRI at The Grange University Hospital in Cwmbran, I got the call: I needed to go to hospital immediately to have major brain surgery. My son broke the news, the doctors had called him whilst he was working in London. He was pretty shocked. So was I.
That’s when I was diagnosed with a grade 2 meningioma, a brain tumour.
I was intensely scared. Shocked and stunned. I had so many questions. I met with the neurologist, who talked me through surgery and the risks.
It was explained that any surgery has risks, but that brain surgery could result in damage that could affect mobility, speech, sight, hearing – well almost anything that the brain controls really. I guess they are obliged to tell you of the risks - as with any operation but it was still a shock to hear this. And living on my own, well, how would I cope? It was a lot to take in, but the operation had to be done. And to be honest, I didn’t have much time to worry as the operation was the next day. The lady in the bed opposite could see that I was very scared and gave me a whole stack of ‘Hullo’ magazines to read. Oddly I didn’t feel like reading but I appreciated her kindness! I remember worrying whether I would ever be able to read again and for some reason I was a little bit irked to think that the last thing I would have read was a ‘Hullo’ magazine.
The operation was a success, they removed the tumour, but what came next was harder than I expected.
The aftercare from my GP surgery was virtually non-existent. I struggled to get the help I needed. I think the NHS is wonderful, and the staff in the hospital could not have been better but my local care was not so good. The GP surgery didn’t contact me or visit – and as I couldn’t drive, even getting my stitches removed was a challenge. I had been sent home with a ‘stich removal kit’ so I wondered if I was expected to do a DIY job. I felt I wasn’t really qualified to do this! But in the end a friend who was a retired GP came round to take the stitches out.
Since surgery, although in a physical sense I am well, it's the invisible stuff that has been the hardest to deal with. I haven’t felt like old myself. Whether it’s the tumour, the operation, or the medication, I don’t know, but I feel like a different person. I’m more volatile, irritable, and less tolerant. The smallest things can send me into a spiral, and that’s been hard for me and those around me. Depression bites me too.
It’s painful knowing I’m different. People sometimes see me as grumpy and awkward, but it’s not intentional, it’s just how things are now. Recognising that I can be irritable I have learnt to withdraw from social occasions if I feel …ratty. It is isolating. And sadly, my children have become distanced from me. I look the same, but behaviourally I am different. I am difficult.
Other side effects have been that I now experience sensory overload in busy places. I’ve lost interest in food because I can’t taste anything. Yet at the same time, my sense of smell has become incredibly sharp. I remember being in hospital and knowing who was coming to visit just from their smell in the corridor. But that is all easier to deal with than my behavioural issues.
I have tried joining online support groups, but I prefer real face-to-face connection. Not being able to drive makes it difficult to attend group meetings. People don’t realise how invisible the damage can be.
This Lent I was wondering what to give up. As a joke, a friend said to me, “Why don’t you give up being grumpy and try being nice?” I replied, “That’s far too difficult, it’s easier to go for a bike ride!” So that’s what I did.
600 miles of cycling!
I made a promise: I would cycle 100 miles a week for six weeks in lent and that for every mile I cycled, I’d donate £1 to Brain Tumour Research. That amount of cycling certainly was a challenge for me. But I did it and word got out in the village, and I ended up raising £910. Cycling has helped my mental health and keeps me physically active. It’s given me a sense of purpose. And I can’t be so irritable or grumpy on a bike, well I can be but as I cycle on my own, no-one knows!
I had a routine MRI this February 2025, and thankfully my neurosurgeon said the scan was clear and the other tumour is stable. I'm going to have my medication adjusted to see if that helps with the mood swings and irritability. And I may not have my driving licence, but I’ve got my bike.
My journey underscores the importance of comprehensive post-surgery care and support for brain tumour patients. It also highlights the need for greater awareness of the lasting impacts of brain surgery, beyond the immediate physical recovery.
I’m sharing my story to help others understand that surviving a brain tumour doesn’t mean everything goes back to normal. The effects can be life-altering and deeply lonely. But I’m one of the lucky ones, I’m still here. And for that, I’m grateful every day.
Glynis MacDonald
May 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Glynis' story, you may like to make a donation via https://braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy.
Together we will find a cure.
