In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
When Charlotte Hughes, from York, started suffering from leg cramps and numbness in 2015, she never expected her symptoms would be related to brain cancer. Nearly a year after her symptoms began, Charlotte, a 43-year-old recruitment consultant, was diagnosed with two gliomas on the motor strip in her brain. Charlotte has since undergone three brain surgeries, the most recent being an awake craniotomy, during which she watched the Netflix period drama, Bridgerton, on her iPad! Charlotte is extremely grateful to the surgeon, oncologist and nurses who have helped her through her illness so far and she remains positive about the future.
Charlotte tells her story…
As I went into my most recent brain surgery, my first awake craniotomy, I was terrified. But whilst I watched Bridgerton on my tablet, my neurosurgeon “Raj” and his amazing theatre team kept me calm and made me giggle for four hours. My viewing choice during my surgery definitely raised a few eyebrows and made me the talk of the ward but it was worth it to make the doctors and nurses smile. I can’t thank them all enough for giving me another chance at life, having been told my cancer was progressing.
It all started at the beginning of 2015, when I began getting funny feelings in my legs. I would wake up with numbness, which made it difficult to stand up when I got out of bed. I thought it was cramp or a trapped nerve and ignored it but when I mentioned it to my mum, she encouraged me to go to the GP. When I saw the doctor, she thought I had epilepsy and was very dismissive when I disagreed and said I thought it was something else. She agreed to refer me to a neurologist at York Hospital. Weeks later, however, I was still waiting for that appointment to come though, so I went back to the surgery to see a different GP. This time the doctor said he thought it wasn’t epilepsy and that I was actually displaying some of the markers for multiple sclerosis (MS). He referred me for an appointment with Dr Heald, a consultant neurologist at Nuffield Health, a private hospital in York. When I saw Dr Heald, he said he wasn’t sure what was happening to me. He had an NHS practice at York Hospital, so I was referred back to his non-private clinic and he ordered my MRI scans.
“It wasn’t until December 2015, nearly a year after my symptoms started, that I had my first scan. The day after my scan, I was asked to go back in for another scan with contrast dye.”
It was at this point that I thought there was something going on. It was Christmas week when I got another phone call, asking me to go in and see Dr Heald. On 30 December 2015, I went in for my appointment and was told that they had found two “masses” on my brain. He said he thought they may be cancerous or they may be related to MS. I was advised to come back for another MRI scan in a month’s time.
The next month was a horrible, stressful time. My mum lives near me in York and I went to stay with her for a few weeks. I would sit upstairs and binge-watch boxsets, to try to keep my mind off things. I just didn’t want to think about it. At the time, I had a friend going through Non-Hodgkin lymphoma; we would chat a lot on the phone and support each other through everything.
“I’m not very good at being poorly and hate having time off work, as my career in recruitment is such a big part of my life.”
At the end of January 2016, I was given the option of being referred to either Leeds General Hospital or Hull Royal Infirmary. I chose Hull, as I knew my mum would have to drive me there and I thought it’d be easier than trying to navigate the one-way system in Leeds! When I went to Hull for my initial appointment, the first person we saw was Dr Chittoor Rajaraman, who became known to me as “Raj”. He immediately put me at ease. He told me he understood that I’d had a bumpy road getting to this point but that he would do all he could to get things moving in the right direction. From that point, everything seemed to happen very quickly. I was given a full body MRI scan and I met my wonderful Macmillan nurses, Holly and Louise.
In March 2016, I had my first brain operation; a biopsy, so samples could be taken to determine the grade of my tumours. The histology reported that I had two, grade-2 gliomas, with elements of grade 3. I was referred to consultant clinical oncologist, Dr Sanjay Dixit, who talked me through the next steps. I am the sort of person who likes to know everything upfront. I prefer consultants to be matter-of-fact and that’s exactly how Dr Dixit and Dr Raj have been with me from the start. Unfortunately, however, it was decided that my tumours were inoperable, as they were located on the primary motor cortex of my brain. Instead, I would have Temozolomide (TMZ) chemotherapy, to try to prevent the tumours from growing.
I started treatment in April 2016 and managed to continue working throughout. In November that year, Dr Dixit also advised me to start radiotherapy. I was reluctant at first, as I’d read that you can lose memories through the treatment. He managed to persuade me that it was worth a try and so I started my six-week course of daily radiotherapy in December 2016. My mum and I would leave York at 6am to get to Hull in time for my radiotherapy. She would wait with me while I had my treatment and drop me off at work back at Adecco in York for 11am. I was determined to carry on working but I was feeling really tired.
“I’m lucky to have such wonderful employers; they’ve been amazing and always promised me a job to come back to when I’ve had to take time off.”
Apart from fatigue, I didn’t suffer too badly from side effects. I took anti-sickness tablets while I was on chemo and pain relief for bad headaches. I’ve always been of the opinion that if there’s a drug to treat something, then take it!
I finished chemo in May 2017 and continued to be scanned every three months. By the summer of 2017, these scans were reduced to six-monthly and I didn’t have any more treatment until December 2018 when, unfortunately, they found a new tumour. At first, Dr Dixit thought it may have just been scar tissue from the biopsy but after further investigation, it turned out to be a grade 4 glioblastoma multiforme (GBM). The good news was that it was operable and on 4 February 2019, I had surgery to remove the tumour. I recovered well from the operation and had more chemotherapy. I had a total of 24 cycles in the end; it was relentless but I got used to it and it became my new normal. I may not have been as fit as I was before and I was definitely more tired but other than that, I tried to live my life as I did pre-treatment. I’ve always found that if I deal with things well, everyone around me copes better too. As well as my mum, I have two sisters and my 11-year-old niece, who live nearby. We’re a very tight-knit family and they’ve been a fantastic support to me throughout.
I was still on chemotherapy when COVID-19 caused the UK to lockdown in March 2020.
“I’ve seen and read a lot about cancer patients’ treatment being stopped because of the pandemic but thankfully, I experienced none of that.”
It was awful to see what some people were going through but I felt very grateful that my treatment continued with no breaks. Unfortunately, however, some changes to my tumour were detected in May 2020. They continued to monitor things and in October 2020 there was more bad news, as further growth was detected inside the tumour. Another scan six weeks later revealed more growth and so Dr Dixit said: ‘we’ll just take it out’. He had so much faith in my surgeon to remove it successfully, as did I.
Raj called and talked me through my options, as I had a choice of an asleep or an awake craniotomy. We spent two hours on the phone going through every single detail. I had so many questions but he didn’t rush me, instead taking time to arm me with all the information I needed to make an informed decision. I also spoke to a Macmillan nurse, who gave me lots more information about awake craniotomies and what they entail. Every single question I had was answered. I then had a conversation with my mum and she and I agreed that I’d be crazy not to have the awake surgery, as it would mean Raj could be much more precise, as he removed the tumour.
“My awake craniotomy was on 3 February 2021. I was scared to death going in but the team was fantastic and we actually ended up laughing and joking throughout.”
I had my phone with me, so I could take selfies to show my family and friends afterwards and I watched the first few episodes of Bridgerton, as Raj drilled into my head and removed the tumour. My neuro-physio Sally thought it was hilarious, especially when there was a raunchy moment in episode one! At one point my head was hurting, so Raj put some saline solution on it and it felt amazing. I told him it was like drinking coconut water with a hangover. I spent a total of five hours in surgery. When I was in recovery afterwards and even back on the ward, the staff were still talking about me watching Bridgerton during my surgery; they thought it was really funny. I’m just glad it gave them a smile and I am relieved that we didn’t get to the really rude scenes.
When my sedation wore off after the surgery, I became aware that I had a lack of sensation in my left side. It was awful. I couldn’t put my pyjamas on and I felt hugely frustrated. I remember being in the high dependency unit (HDU) and Raj came to see me. I cried and shouted: ‘you’ve broken me!’ He tried to reassure me that I wasn’t paralysed and that my sensation would come back. The next day, as I began to feel a little better, I saw Raj again and apologised for lashing out at him. He said there was no need to apologise and that I must have been absolutely exhausted. You don’t realise how much energy is required when your brain is being opened up. He said that I had worked really hard. I asked him whether my post-op MRI scan results were ready. He didn’t realise I had already been scanned, so together we went to look at the images.
We sat side-by-side at the computer screen, looking at the ‘before’ and ‘after’ pictures and he read the report, which described my primary tumour as being ‘deleted’. I was ecstatic. I never thought he would get all of it but somehow, he did.
“I didn’t know how to thank someone who’d just saved my life. I cried again but this time they were tears of happiness.”
I stayed in hospital for three nights and then went to stay at Mum’s house to recover. Things have been a bit up and down since. The sensation has come back in my arm and leg, so physically I’m getting back to normal but I’m still not very good at being poorly and I’m really keen to get back to work. In the last few days, I’ve proven to myself that I can cook, shower and bath myself and so I’m planning to move back home in the next few days. Besides wanting to get my independence back, I’m missing my cat Jasmine too much.
I’m not yet sure what the next steps will be for my treatment but I’m expecting to be put back on chemo at some point. I continue to feel very grateful for the wonderful support network I have around me. As well as my mum and sisters, I have great friends who help me to live a happy and full life. In ‘normal’ (non-COVID) times, I enjoy lots of holidays, meals out and nights in with a takeaway with my mates and I appreciate all of them so much.
“I talk openly about my cancer; I don’t ever want it to be the elephant in the room or for people to feel that they somehow have to tread on eggshells around me.”
Earlier this year, I registered to take part in the Brain Tumour Research 10,000 Steps a Day in February Challenge, to try to raise some money for a cause close to my heart. One of my oldest friends, Louise Gofton, also signed up to fundraise in support of her younger cousin Harry, who has a brain tumour. Louise completed 20,000 steps a day for 28 consecutive days (10,000 for me and 10,000 for Harry). I was really disappointed to have to withdraw from the challenge when I got the date of my surgery. Not only was it going to be a way of getting fit and hopefully losing some weight, I also wanted to use it as a means of raising awareness of the disease.
So little is known about brain tumours and it is unbelievable that just 1% of the national spend on cancer research has historically been allocated to this devastating disease. I found out the hard way that it is all too easy for GPs to dismiss symptoms. It makes me angry and upset and I’m determined to do my bit to highlight the stark statistics and the issues surrounding the disease. I also hope that by sharing my story, I am giving people hope. Less than 20% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers but five years on from my diagnosis and I’m still living life to the full. I still make plans, although I remain realistic and know what my long-term future is uncertain. But in spite of my limited life expectancy, I am optimistic and will be eternally grateful to everyone who has supported me on my journey so far.
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 Charlotte’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.