In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Labour Councillor and mum-of-three Jeanie Bell was diagnosed with two meningioma brain tumours at the age of 41. Her diagnosis came in November 2017, after years of suffering from a range of symptoms, including headaches, facial pins and needles and mood swings, which her doctors thought were peri-menopausal. Since discovering she had two, low-grade brain tumours, Jeanie set up a support group in her home town of St Helens in Merseyside, to help others on a similar journey. She is sharing her story to raise awareness of low-grade brain tumours and the profound impact they can have.
Here is Jeanie’s story…
In the two years since my brain surgery, I have returned to my career in local government, bringing forward a new domestic abuse strategy and fronting campaigns on everything from licencing to hate crime. I have joined the Local Government Association (LGA) Safer and Stronger Communities Board and I now sit on the Shadow Cabinet Justice Sounding Board. I have completed the LGA Next Generation Leadership Programme, led training sessions and public speaking events. Not bad for a woman with damage to her frontal lobe, resulting in mood swings, depression and anxiety with suicidal thoughts, alongside focal and tonic-clonic seizures, which result at times in incontinence.
It all started in 2015. I was getting all sorts of unusual symptoms, which included headaches, migraines, dizziness and mood swings. I’d been back and forth to my GP and had loads of tests carried out to check my bloods and my hormone levels but they could never find anything conclusive. The doctor’s best guess was that my symptoms were peri-menopausal. I carried on as best I could for the next couple of years, until June 2017, when I had a seizure at work.
“It came just after the local elections and things were really busy and pressured. I was under quite a bit of stress, so presumed that that was the cause.”
I was taken to Warrington Hospital to be checked over. They said that people have seizures for all sorts of reasons and that mine had probably been a one-off but as a precaution, I was referred to a neurologist. It was another six months before they carried out an MRI scan. I got the results on 13 November 2017. When I answered my mobile at work and the consultant told me who he was, I knew. He told me they had found two growths, one was 1.5cm and one was 2cm in size. He said I needed more scans urgently and a referral to a neurosurgeon to discuss the next steps.
Taking such a life-changing phone call at work was surreal. I diligently took notes. The person on the other end of the phone asked me if I had any questions and, in a sing-song voice I said, ‘no, that’s great, thanks for letting me know’. It was very weird. My boss said I didn’t look well and tried to send me home but I refused. Instead, I went for a walk around the block to try and process what had just happened. I was in total disbelief, having convinced myself that there was nothing there. I called my sisters, who are like my surrogate parents since both my mum and my dad are no longer with us. I also told my husband, Rodney, who was wonderfully supportive and reassuring.
“We decided not to tell the kids straightaway. I wanted to wait until after my appointment with the neurosurgeon, when I would find out more about my diagnosis and prognosis.”
I was pretty sure I should have been hysterical but all I could think of was when would I get my Christmas shopping done?! I hoped it wouldn’t stop me going to the beer festival I was due to attend in two weeks’ time. In the end, it was too difficult to keep the news from my children for long and I told them after a week. They could just sense there was something not quite right. We’re very open and honest as a family. Rodney and I sat them down and talked frankly to them. Our eldest, Heather, was 19 and away at uni at the time but she came home for the weekend. She wrapped her arms around me and told me everything would be fine. Our two younger girls Rosie (now 16) and Bea (now 17) were also brilliant; they asked questions and told me what they had learned about the brain in school. We chatted for a while then all went out for a big walk at the local canal. We joked around and hugged one another. We decided that we were all going to stay really positive and not let this diagnosis get us down. It was just a challenge that we would take on and overcome together.
I met my neurosurgeon, Mr Chavredakis, on 6 December 2017. It was a strange experience but he was completely brilliant; calm and composed, which reflected back on me. Going in, all I wanted was the damn tumours taken out of my brain. I was convinced that I would be begging him for brain surgery! As it happened, the verdict was that they would be staying put for the time being and I was fine with that. They were both grade 1 meningiomas, the least aggressive and slowest growing form of meningioma, therefore carrying the longest prognosis. Seeing them on the screen sent me into a bit of shock at first and I could feel myself shaking. They looked much bigger than I thought they would. Looking at my brain squished around them was horrible but fascinating too. The upshot was they didn’t have to be removed imminently, as long as my symptoms didn’t increase and I didn’t have another seizure. Mr Chavredakis said the plan would be to ‘watch and wait’, reassuring me that I would be monitored with three-monthly scans, in case of any change.
Although I was alright with my treatment plan, the reality that I would have to continue living with these things in my head, causing symptoms, hit me hard. Luckily, the support I received from The Walton Centre in Liverpool was brilliant. I was assigned a neuro-oncology nurse; she gave me her card and encouraged me to get in touch if I had any concerns whatsoever.
I really struggled with the reaction from other people, when I told them that my tumours weren’t cancerous.
“While my close family and friends were really understanding, the general consensus from people I told was that ‘benign is fine’. I felt like they weren’t taking it seriously.”
Having a low-grade brain tumour doesn’t mean that it isn’t dangerous. They can still have a profound impact and make your life a living nightmare. Because I wasn’t a cancer patient, I didn’t have the opportunity to link in with Macmillan. I felt like I was in limbo with nowhere to go. The other problem I found is that most support is based in Liverpool and if you are ill, or you’ve had your driving licence revoked, there is very little locally to help. That is one of the reasons I decided to set up a support group for St Helens residents suffering with a brain tumour. The first monthly group took place on 6 September 2018. I was delighted that more than 20 people turned up and it was a huge success. Since then, it has gone from strength to strength, providing a signposting service with a range of help and advice from the Brain Charity and other Merseyside agencies. As well as practical support, the group is about having a social with people who understand what you’re going through. It’s about coming together and having a laugh in the face of adversity. We share experiences and encourage our loved ones to come along too, as it is beneficial for them to connect with relatives of brain tumour patients.
The same month that I started the support group, I discovered that I was going to have to have surgery to remove my tumours. The decision was made as my symptoms weren’t improving; on the contrary, they were progressively getting worse. I had reached the point where I just wanted them out. The surgery took place on 28 September 2018. The drive to the hospital that morning was both terrifying and serene. I won’t ever forget the absolute beauty of the sight of the mist settled across the fields.
“It was so quiet and still with the sun rising and the quiet hum of the car. All I could think was that this could be the last time I saw that sight and I was taking in every second of it.”
Looking back, I realise I was in a bit of shock. Everything had happened so quickly and I had been so busy reassuring my family and friends, organising my work and getting the house clean, that I had forgotten myself. I started to panic and once I had checked in, I began asking myself what if I didn’t come round? I hadn’t organised a will. What if I couldn’t speak, walk, think…? If I am ever in this situation again, I will factor in some time for myself to make sure I am emotionally prepared. I eventually got wheeled into surgery. The team was just amazing, I was laughing and joking with them right until I was asked to count backwards and I fell asleep. The next thing I knew, I was waking up in recovery after five hours in the operating theatre.
“I remember my surgeon telling me he had managed to remove both my tumours and there’d been no complications. I smiled so much I couldn’t contain it. It was the most incredible moment of my life (apart from childbirth, obviously).”
The second thing I did, thanks to a tip from a fellow brain tumour warrior, was to recite all of my PIN numbers, phone numbers and kids’ dates of birth. I was amazed I could do it without any hesitation. The third thing I did was to grab my phone, take a photo and send it to my kids and hubby saying, ‘I’m alive!!!’. The recovery nurse laughed and said they had never seen anyone come out of surgery laughing and smiling so much. In fact, I was so buoyant, that we had a fascinating conversation about zombie movies and the BBC drama Killing Eve. I was so engrossed that I hadn’t even tried to look at my head. They wheeled me into the lift and I saw myself in the mirror. My huge scar ran from one ear to the other. I should have been shocked but I laughed again. Not only did I survive but I had an awesome scar to boot!
By the time my husband and sister arrived at the hospital I was sitting up drinking tea, eating toast and chatting politics. They were shocked to see me so well and the nurses on the ward looked equally surprised when I insisted that I walked to the toilet. Around the ward I saw a variety of patients in various stages of surgery recovery. What was absolutely clear is that recovery is individual and predicting it is hard. I almost felt guilty that I had bounced back so quickly. I knew I should be feeling worse and had no idea why I didn’t. I was determined from the moment I came out of surgery to get better; I drank loads of water to stay hydrated. I sat up in bed, rested when I needed to and tried to keep a good routine. Every day I chose something to be grateful for and tried to laugh my way through every swelling, bruise and black eye. I smiled because I was happy, I laughed because it made me even happier.
I was out of hospital after three days and continued to recover well. Once I had my stitches removed, the tightness around my scar area eased and as soon as my scabs fell off, I could finally wash my hair. I felt so much better than I did before surgery; my headaches had gone, as had my anxiety, and the pins and needles in my face. I would still get dizzy and very tired but that was gradually improving. One of the strangest side effects I noticed post-surgery was that I really liked horror films – before my operation I couldn’t watch them without freaking out and now I can’t get enough of them!
Recovery wasn’t all plain sailing. Two weeks after my surgery, I developed pneumonia and a week-and-a-half later I got inflammation on the brain. It started with a headache that culminated in a grand mal seizure, which involved bladder opening, shaking and crazy noises. It took Rodney five minutes to wake me up and then another 30 minutes to get any sense out of me. We hoofed it to the hospital for a brain scan, where we discovered I had a nice cushion of fluid around my brain.
“I spent three nights in hospital as a result and was put back on steroids and now the anti-epilepsy drug Keppra too. I felt thoroughly fed up but was relieved to be home in time for Christmas.”
I was back at work by the end of January 2019 but it wasn’t long until smaller seizures started coming back and a few months later I was diagnosed with epilepsy. They thought it was caused by the after-effects of surgery and my consultant is hopeful that things will eventually level out. It means, of course, that I still can’t drive and I have also had to give up one of my jobs. As well as being a local councillor, I used to work as a Parliamentary Assistant and Senior Caseworker for an MP. He was brilliant, allowing me to do flexible working, but I just didn’t feel like I was able to continue juggling my various roles and felt I wasn’t being fair to them.
One thing my surgery didn’t stop me from doing was picking up where I left off with the St Helens support group. The monthly sessions continued in person, until March 2020 when the Covid pandemic meant we had to switch to doing the group online. What continues to amaze me about the other brain tumour patients I meet, is their resilience in the face of incredibly difficult situations. Everyone I’ve met through the group has been so brave and adaptive. In your worst times, the best of you comes out. Sadly, since the group formed, we have lost two of our members to high-grade tumours. One of them, Mike Lindley, died within 12 months of being diagnosed with a glioblastoma multiforme (GBM). He was just 63. Another gentleman, Steve White, died from the same aggressive tumour-type, having raised more than £100,000 to have life-extending treatment abroad.
I feel extremely lucky that my brain tumours were slow-growing and easy to remove. I’m told there is just a 10% chance of them recurring and I continue to be monitored with annual MRI scans. Having said that, like so many others I’ve met on this journey, it took far too long to get a diagnosis. All too often you hear of patients who have had to wait many months, sometimes years, with many visits to the GP, before establishing the cause of their symptoms. However, we mustn’t forget that while earlier diagnosis may bring relief, for too many patients, there remains a lack of treatment options. There is still no cure for the disease and greater funding for research into brain tumours is desperately needed to address this problem.
“My brain tumour diagnosis and subsequent treatment has definitely changed my outlook on life. I’m now much more conscious of enjoying the time I’ve got.”
Before this happened, I would work until the point of physical and mental exhaustion. Now, I’m much more disciplined now. If I’m tired, I will take a break. I will never forget the outstanding care I received at the Walton Centre and the incredible hospital staff who looked after me. I have also been hugely grateful for the support I have received from family, friends and colleagues, who have kept me positive and cheerful even in the darkest moments. Without them, I couldn’t have got through it. They didn’t allow me to be self-indulgent. They took the Mickey out of me and together, we laughed through it.
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 historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been inspired by Jeanie’s story, you may like to make a donation via or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.