Helen Hanlon, an admin manager from Biggin Hill, South East London, suspected she had multiple sclerosis (MS) when her symptoms started. These included headaches, clumsiness, blurred vision, forgetfulness and sometimes waking up a little shaky. The 49-year-old was diagnosed with a low-grade meningioma in September 2023 and is currently on a ‘watch and wait’ monitoring approach.
Helen tells her story …
I genuinely thought I had multiple sclerosis (MS) when my symptoms started. I would fall over at the drop of a hat and I would forget things. I also had really bad headaches and would wake up a little bit shaky sometimes. My vision was affected too, so things were blurry and I got optical migraines. I also became clumsy. I’ve got three sisters and their running joke is that I’ll be the one to stack it, and not because I’ve had too many gins.
“Invariably I can’t get through doorways without hitting my shoulders.”
This had been going on for about a year when, in January 2023, I went to the doctor saying ‘I’m concerned I’ve got MS’. Someone at work, after watching me spill two cups of coffee over myself in the space of an hour, said ‘don’t you think you should talk to someone,’ and a nurse carrying out our occupational health checks agreed, which was the final push I needed to make the appointment.
“My doctor did some standard neurological tests and quickly ruled out MS, but she referred me to a neurologist.”
That referral took eight months to come through but, when I finally went to the Princess Royal University Hospital, in Kent, in September, the consultant neurologist repeated the same neurological tests, ruled out MS and said he’d like to send me for an MRI scan. By then I was on gardening leave from my job as a dental practice manager and close to going on holiday. Had I been working, I would probably have delayed the appointment until I was back. It’s just as well I didn’t because that MRI showed I had a low-grade brain tumour, which the consultant phoned to tell me at 8:59am the next day.
Several things went through my mind at the time. I was glad I didn’t have MS and that my tumour was low grade, but I also thought about needing to update my travel insurance before flying to Tenerife the next day. As the shock of my diagnosis began to wear off, I decided I should tell my mum and sisters. They questioned whether I should be getting on a plane and, after calling my consultant’s secretary, I learned I absolutely shouldn’t be. The trip was cancelled and replaced with a spa weekend, which I was very disappointed about.
A week later, I had an MRI with contrast and two weeks after that I was called in for a CT with contrast. Then I was left in limbo for three weeks, which felt so long it may as well have been three months. I’ve now been transferred to a professor at King's College Hospital, in South London, where the nurses are fantastic. I’ve also been given more information on my tumour, a meningioma I’ve nicknamed Tina. It’s considered quite large at just over 3cm by just under 3cm, but I’m told it’s not actually irritating my brain at the moment so is just going to be monitored for now.
“I’m a single mum-of-two and my daughters’ biggest fear is something happening to me.”
I got as far as saying ‘I need to talk to you both’ before they were in tears. My 16-year-old was telling me I was going to die for at least a week, but I think they’re just starting to settle into the idea that this is how it is. My diagnosis has made me take stock of what’s important and, with that in mind, I’m taking part in this month’s 100 a Day Your Way challenge for Brain Tumour Research. I consider myself lucky because my tumour is low grade, so if I can do something to help others by raising money and awareness then I’m all for that. Anyone wishing to donate can do so at www.facebook.com/donate/1683133312153016.
Helen Hanlon
November 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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Helen’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