In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Proud granny, Jan, from Stroud in Gloucestershire, was diagnosed with a meningioma in February 2021. The 62-year-old suffered a seizure – thought to be a stroke - causing her to temporarily lose her speech after already losing part of her vision. Scared she wouldn’t be around to watch her grandson Finn grow, she wrote a book for the then 11-month-old, to pass on a message of exploration and curiosity.
Jan understands that everyone has a different story to tell and counts herself lucky to have come out the other side.
Jan tells her story…
Before my diagnosis, I had my own cleaning and gardening business which kept me busy. Sometimes so busy that I didn’t have time to draw and paint, my hobby and passion. At the time I had four beautiful grandchildren, three girls and a new grandson, Finn, who was the youngest at 11 months old when I was diagnosed with a brain tumour.
Being a granny had always brought me so much joy and allowed me to be creative.
As the grandchildren grew, I watched them develop personalities which I tried to capture in a book written and illustrated by me.
I was so scared that my diagnosis had other plans and wouldn’t allow me to do the same for Finn.
In 2019 I started to notice I was becoming forgetful. Only to remember suddenly that I hadn’t locked up the houses after I cleaned them and turning back to secure them.
As a person I had always had the attitude of getting on with things and so I pushed this new behaviour to the side and didn’t bother telling my husband Steve. There were many things I thought it could be, old age or perhaps the beginning of Alzheimer’s. I felt an urgency to do things I loved like getting out in nature and painting and I couldn’t understand why.
For years I had suffered with migraines, one time having a meltdown. Although Steve was reassuring, I was sure there must be something wrong with me. Years later in January 2021 I felt that same sense of losing control I had experienced years before. I became short tempered and angry and didn’t recognise myself.
This was all around the time we moved from Cornwall to Gloucestershire, shortly before lockdown. I had lost all confidence in getting out of the house. There were so many factors that could have added to how I was feeling, I never imagined they were the symptoms of a brain tumour.
My diagnosis came in the February. Steve encouraged me on a walk to the chemist which was ten minutes away. On the way, I lost part of my vision, half of my world went black. I marched on at a speed which meant Steve struggled to catch up.
When it was my turn to speak at the counter there was the sound of only a grunt, no sentence or even words. I couldn’t understand why I was there. Feeling embarrassed I went outside. Upset and unsteady on my feet, I was able to say a few words but kept repeating myself. I burst into tears through fear of what my body was doing, no longer under my control.
Thinking I could be having a stroke I was rushed to A&E at Gloucestershire Hospital which is where I struggle to remember from this point. As a result of the tumour, I suffer with short term memory loss.
A stroke was quickly ruled out and I had various tests to check on my reactions and responses. At this point I was in the hospital alone, due to COVID-19, which meant I was on my own when I was given my diagnosis.
“The doctor sat me down and said the words ‘you have a brain tumour’. All I remember is shouting ‘no!’ at the top of my voice.”
It never occurred to me that I could have a brain tumour, I was terrified. The hospital staff called Steve at 10:30 that night and he came in to be with me. I learned the stroke-like symptoms that admitted me to the hospital was a seizure. A family member had epilepsy and this was nothing like the seizures I had seen happen to them.
Whilst waiting for surgery I was discharged and sent home with medication to help ease the swelling, which was causing pressure on my brain.
The thought of not waking up from surgery flooded my mind. Steve and I spoke very matter-of-fact about life, making funeral arrangements and getting affairs in order. I knew, should I make it through surgery, I could have life-changing injuries and I may not be able to draw and paint again. This was upsetting to acknowledge as both things were what made me, me.
One night I couldn’t sleep and penned a book for Finn. I was slow as I wrote each letter and it took me a long time but I never crossed anything out, the story just flowed from my head to paper. It was my way of passing a message directly to Finn, encouraging him to explore and appreciate the natural world around him and stay curious as he grows older – something I wasn’t sure I would be a part of.
On 12 May, surgeons at Southmead Hospital removed most of the fist-sized tumour. A biopsy confirmed it was a grade 1 meningioma, slow-growing meaning I could have had it for years. For now, I have annual scans to check for any re-growth and changes of the remaining tumour.
My recovery was hard. I needed strong medication, which caused hallucinations of things from my past. I now live with quadrantanopia which is a loss of vision in one quarter of my visual field and am under the care of an ophthalmologist
Despite this, I have been able to return to painting and was thrilled to be able to read Finn’s story with him. Steve wondered how I knew what Finn would look like in the future as at the time I illustrated the book he was only a baby. Curiously, he has grown to look like Finn in the book! This I can't explain.
The tumour was an uninvited guest, it arrived completely out of the blue. I am extremely grateful for what the surgeons did for me. Without their skill and the hospital staff I wouldn’t be here. I count myself as being very lucky to have come out the other side but I know that everyone’s story is different. We need to draw attention to brain tumours and raise money to carry on researching them to eventually find a cure.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure