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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Sally Grainger

It was 2006 and Sally was 40 when she first noticed something could be wrong. It was thought the mum-of-two from Stourbridge in the West Midlands could have an eating disorder after dramatic weight loss. When she began to experience sickness a few months later, a gastroenterologist referred her for a CT scan and what she thought could be a problem with her stomach, turned out to be a tumour on her brain. Sally had surgery to remove a grade 1 astrocytoma in February 2007 and is monitored with an MRI scan every two years. Since her diagnosis, Sally, now 57, is a key figure in the brain tumour community finding a love of cycling which she has used to fundraise for Brain Tumour Research.

Sally tells her story…

I was in my 40s when I started having problems with my appetite. From around August 2006 I didn’t feel like eating.

My hubbie, Patrick and I went away to Wales for a weekend without the kids who were staying with the in-laws. Whilst out for dinner I had a few bites and couldn’t eat anything more. I felt full instantly, struggling to even drink a cup of tea.

Weight started to drop off which was very unlike me. I went to the doctors who sent off for blood tests which came back clear.

Between September and Christmas, I went back to the doctors several times. I had more blood tests but they still showed nothing. I continued to lose weight and the doctor questioned whether I was anorexic.

In early 2007 I started getting more symptoms. Vomiting several times a day. I had no feeling of nausea but I could be having a conversation with somebody and had to run off as I felt it coming. I later found out that this symptom was that of pressure releasing which had built up by fluid around the tumour.

In February we paid privately and saw a gastroenterologist at West Midlands Hospital in Halesowen. We thought because of the sickness that I had a stomach problem. He arranged for me to have an endoscopy.

I had this done very quickly and again, nothing untoward was found. 

When I went in for the results I told the doctor that I had a new symptom. When I tipped my head back I was instantly sick. I was trying to decorate my son’s bedroom and couldn’t look up to paint the ceiling. It was sudden projectile vomiting. Mr Fisher, the gastroenterologist said he wanted me to have an MRI on my neck as I may have a trapped nerve. Whether he suspected something then, I don’t know but he got me in for an MRI very quickly.

I had the scan on a Friday and the following Tuesday I had an early morning phone call to tell me Mr Fisher needed to see me that lunchtime. I told his secretary that I was at work. She said, no, you need to be here at 12.45pm.

I knew that they’d found something. I dropped my two kids off at school, Penny then aged 15 and Luke 12.

We had our own butchery business in Stourbridge which we owned for 13 years and later sold in October 2008 after my diagnosis and surgery. I ran the delicatessen counter. I arrived at work in a panic and told Patrick about the appointment.

That morning was a blur. Patrick came with me to the hospital. When we walked into the room, I could see a computer screen with a skull on it. There was a huge lump on the skull. At the bottom of the screen was my name. Mr Fisher told us he’d found what he thought was a cyst and that he was referring me to the Queen Elizabeth Hospital (QE) in Birmingham as they were experts in neurology.

I received an appointment within a few days. Patrick and I went to the QE. I was told I had a growth in the cerebellum and that it needed removing within the next month.

Within two weeks I was in theatre on 22 March 2007. I cried all the way there. I was convinced that I wouldn’t wake up. The operation had to be done with me in a seated position because of where the growth was. At this point I still didn’t know what the growth was. The surgeon told me they wouldn’t know exactly what they were dealing with until they ‘got in there’.

After the operation my appetite returned immediately and for a week after I ate a box of chocolates every day. I was told by the consultant, Mr Kay that he had taken over from his registrar during the op as it was more complex than he realised it was going to be. He told me I had a grade one pilocytic astrocytoma.

There is a tiny chance it will grow back but they also said it was the type of tumour that kids have and that mine may have been growing for 40 years. I was told not to worry about it coming back and to get on with my life.

I spent eight days in hospital with an expectation of 18 months for recovery. I couldn’t understand why it would take so long. However, the first time I tried to go for a short walk I only made it 50 metres to the end of our cul-de-sac and I was exhausted and for eight months had to surrender my driving licence.

I had an MRI every 12 months for the first five years. Then it went to 18 months and now almost 16 years later I have an MRI every two years. This was offered and it was my choice to do that.

My diagnosis changed my outlook on life, after selling our butchery business to retire in our 40s, it’s then that I decided I needed a hobby that could also help me stay healthy. That's when I joined a cycling club.

My first major charity ride was in 2013 when I cycled Land’s End to John O’Groats, raising more than £5,000 for charity. In August 2022 I cycled 300 miles in a week to raise money for Brain Tumour Research and to mark 15 years since my life was changed by a brain tumour. I had never cycled properly before my diagnosis other than on holiday with family when it would just be a gentle tootle.

My journey with my children was the hardest part for me. I was just terrified that I wasn't going to be there for them as they grew up and entered adulthood. I sent letters to their school to explain about my illness and that they might be affected. They did get a more chilled out mom after though. The year after my op we did everything: paragliding in The Alpes, high rope climbing in the trees in France, plus canyoning and abseiling in gorges.

Without letting them get away with everything, they had a great couple of years when I wanted them to experience as much as possible.

Fast forward to 2023, I try to book as many holidays as possible. My hubbie and I do lots of motorcycle touring in Europe and we also have a campervan and trailer. We go away for a month at a time. Motorbike and pushbikes in the trailer so we set up on a campsite and use the bikes to explore the area. Since COVID we have done a lot more exploring of the UK. Our son has also moved to Devon so we visit him as often as we can.

I hate negativity in people. I encourage everyone to be positive. I have a couple of friends who are currently battling cancer and I do what I can to help them face their illness and stay strong.

My motto in life is 'do more of what makes YOU happy'. This is what I try to do but of course it's always my hubbie and my grown up kids that make me the happiest.

Sally Grainger
March 2023

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.

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Together we will find a cure.