Colette Disley, from Liverpool, first started suffering personality changes and depression in 2016. After her behaviour left her family estranged, she discovered she had been living with a meningioma in 2023 after collapsing at a train station. She suffered a stroke during surgery and now struggles with mobility and memory issues. 
This is Colette’s story, in her own words…
About eight years ago I was going through a bad time mentally, I was very depressed and suicidal, and totally not me.
I didn't realise I had a problem. A couple of people close to me had died and I thought this had brought it on. A couple of years went by like this and I started to change. I began arguing back with people, and began acting strangely, like disappearing for days on end, but never with the intention to hurt anybody. It put a massive strain on the family.
“Six years ago, I lost all contact with my three children.”
My whole life fell apart. It took a long, long time to recover. I was fortunate as I had the support of a couple of amazing friends, my nephew Thomas and his wife Donna, my family in Australia, and of course my husband Frank. He was so worried and didn't know what to do, he had nobody to turn to. I was not safe to be left alone because of concerns about what I would do. Fortunately he stood by me, hoping I would come out the other end.
In early 2023, I collapsed at a train station in Liverpool. When I awoke, the staff wanted to get an ambulance as I was in a right state. I said no, as I was going to Australia three days later, so they put us in a taxi and we went home.
I honestly don't know how I got to Australia. I had a bad concussion and my face was destroyed. I had to lie to get on the plane, saying that I had been medically seen to and was fit for travel when I wasn't. When I got there, my friends encouraged me to go to hospital, and I only went to put their minds at ease.
It was here I was diagnosed with a brain tumour, a meningioma. I was gobsmacked. You never think something like that is going to happen to you.
“I felt so alone. I wouldn't tell anybody how I was feeling; I thought it was the end. I honestly thought I was going to die.”
But I had to get on with it.
I was sent home to the NHS for treatment. I wanted to finish my holiday and see the rest of the family I had out there as I didn’t know if I would ever see them again, but they wouldn’t have it.
The neurosurgeon at The Walton Centre in Liverpool was marvellous. He said the tumour was a very slow grower that had likely been there for many years, that it was very aggressive and it had to come out as soon as possible.
“Now I know that the tumour was responsible for the depression and the personality changes I had been struggling with, but that doesn’t bring my children back.”
I was angry. The tumour had effectively ruined my life.
However, I am here, and I’m grateful for that second chance that so few people get. The tumour wrecked so much, but for so many people it can be so much worse.
My operation took place on May 9 2023, and my whole life was turned upside down once again.
During the operation I had a brain bleed and a haemorrhagic stroke and seizure.
“When I came around, I didn't know where or who I was. I was paralysed down one side, incontinent, and couldn't communicate. I didn't even know what a phone was.”
The surgeon apologised to me but he never needed to. To me, he was God. He’d saved me. It wasn’t his fault, it wasn’t anybody’s.
Luckily, my tumour was low grade so no treatment was necessary after the operation. I was transferred to St Helens Hospital for rehab two weeks later. I was told I would be in there approximately 16 weeks, but with all the hard work of the doctors, nurses, therapists and my determination, I went home to recover after seven weeks. The house and caravan were both checked to make sure they were suitable for me to go home. I spend most of my time in our caravan now. Life has been tough, but we managed, and still do.
I used to do most things at home because Frank was not very well but the roles have now reversed; he does almost everything now as I get so fatigued I have to rest. I lost my independence as I am not allowed to drive and Frank won't let me out on my own, not that I can get very far now due to having seizures. Frank will not leave me alone as he is fearful something might happen.
“It is not just a brain tumour, it’s the trauma and impact it has on your life before, during and after diagnosis.”
Brain tumours are an everyday occurrence that are not truly recognized. They affect all ages, from babies through to the elderly. Please if you can help by donating just a couple of pounds to help Brain Tumour Research help others I would be truly grateful.
Colette Disley
October 2024
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 Colette’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure