In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
When Beth Parker, 27, from Liverpool, went into surgery to remove a brainstem tumour, she was told there was a 20% chance she wouldn’t survive. If she did survive, there was a long list of potentially life-changing risks. Thankfully, the operation was a success and she is on the road to recovery after her ordeal. Beth’s diagnosis with a low-grade haemangioblastoma came after years of trying to convince doctors that her symptoms were real and not ‘just a migraine’. She is now keen to share her story and is fundraising for Brain Tumour Research, to help others facing this devastating diagnosis.
Here is Beth’s story…
A few years ago, I was modelling, burlesque and podium dancing and volunteering for animal rescue centres. I loved to go on adventures, such as rock climbing and caving. By 2017, when my symptoms became too unmanageable, I had to give it all up. My energy levels became too low and dancing caused me to feel dizzy and lose balance. After any activity, I knew that the next day would bring a lot of pain, so I would choose a couple of things a month and then pay the price the following day. I started turning down jobs; I just couldn’t predict whether I would be feeling well enough. It was particularly tough because years earlier I wasn’t able to pursue my dream job of joining the Army due to health conditions causing me to fail my medical assessment.
For months and months, I had been telling my doctor and then my neurologist that I had terrible migraines and pressure in the back of my head, which was getting worse, but I just kept being given new pain killers. I hated the drugs they gave me because they caused awful side effects but didn’t fix the problem. On one occasion I got sent to A&E and while I was waiting to be seen, I had two seizures. I told the receptionist that something really bad had just happened but she told me to wait and it was another four hours until a nurse saw me. I was crying to her, telling her how scared I was and how I could feel something was wrong with my brain. She dismissed my symptoms, telling me I was in the same boat as everyone else waiting and a doctor would see me in a few hours’ time. Several hours later a junior doctor told me she wasn't concerned about my symptoms. I argued and insisted on seeing a senior doctor. That doctor came to speak to me and said that, while he agreed with his colleague, he would give me a CT scan, as a precaution. The CT scan images apparently showed no signs of a tumour, so I was sent home.
“GradualIy, I became sicker; my symptoms included vomiting, dizzy spells, migraines, confusion, memory loss, loss of bladder control, and loss of sensation.”
In 2017, I had what I suspected was a mini stroke; I had extreme pins and needles and then complete numbness across my face. It spread down my left side, leaving me stunned and confused. The next day I noticed my left eye had dropped and my face had swollen. I called 111, who sent an ambulance, which came and took me to hospital but after doing another CT scan, they said they couldn’t see anything obvious and sent me home. After that episode, the numbness would come and go. I had to really push for an MRI scan, asking them to rule out a tumour in the back of my head. My neurologist reluctantly agreed to refer me for the scan. In the end, it was brought forward by my endocrinologist, who agreed with me that my symptoms didn’t seem right. The results revealed a lesion on my brain. They called my mum to give her the results, rather than calling me, but it wasn’t a shock when I found out, as I’d been saying for so long that I thought I had a tumour. I was told they weren't sure exactly what it was, so they sent the images to a specialist at a hospital in Liverpool. Over the next week, I started to get a feeling of increased pressure in my brain and what felt like water trickling in my head. After several phone calls, I was eventually told that a meeting had been held about my results and they decided I needed another MRI with contrast.
Following that scan, I had a doctor quickly pop her head around my door, as she was finishing her shift and about to go home. She told me it was definitely a lesion but couldn’t tell me the name of what they suspected it was, as it was a ‘very long word’ which she ‘couldn’t pronounce’. I remember my nan and grandad coming to visit while I was in hospital. My poor nan had come straight from her chemotherapy. She was on chemo for breast cancer. They were both so worried. We unfortunately lost her sometime after but I always knew she was still with me every step of the way.
I was later told during a consultation that they thought my tumour was a slow-growing haemangioblastoma. They said I wouldn’t see any growth until I was in my forties. There was some disagreement between the medics as to whether it was in my spine or brain but eventually, they told me it was inside my brainstem and at the top of my spine. They didn’t want to do a biopsy, due to the extreme risks, and said they would ‘watch and wait’. From then, my symptoms continued to get worse. I experienced vertigo and loss of feeling on one side, along with immense pressure in the back of my head. Every time I reported to my surgeon or to A&E with my symptoms, I was told they were not tumour-related and it was ‘just a migraine’. I lost count of the number of times I was in A&E vomiting, sometimes barely conscious. My mum, boyfriend and dad would have to take time off work to be with me. I was even sent to a psychiatrist because the medics thought I was making it all up. They said it was impossible for my tumour to be causing these symptoms and that I had a functional neurological disorder, due to not coping with my diagnosis. I knew this just wasn’t true.
My mum has always been really good with research and she found many research papers of other patients similar to me but nobody she presented them to seemed to want to listen. I was told that if I were to have the tumour removed, I would probably be left paralysed or even die. On one occasion I was in a bed in hospital waiting to be seen and, as I was having a seizure, I could hear a doctor in the corridor saying I was faking it. No-one seemed to realise that there were other types of seizures, aside from fitting. I would sometimes twitch but I was unable to move or communicate. It was as if part of my brain went to sleep but I could always hear what was going on around me. I was treated so badly. I can’t even begin to describe the mental impact it has had on me and my family. My mum would come to every appointment with me and was always by my side fighting my corner when I couldn’t fight for myself.
I was having routine MRI scans to check that my tumour hadn’t grown. They were every three months to start with then every six months. They wanted to make them annual but I refused. Finally, following a routine scan in September 2019, I was called in to discuss my results. After months of dismissing my worsening symptoms, the consultant was visibly shaking as I sat down with my family and my boyfriend Dave to discuss his findings. He told us it had grown and that I would need surgery soon. He said they could do it the following week. I quickly decided that I wanted to be referred for surgery elsewhere, having lost faith in the team in Liverpool. My prayers were answered when I was referred to Salford Royal Hospital in Manchester by a lovely specialist my mum is under the care of for her own condition with tumours.
“The day I met my surgeon, the incredible Mr D’Urso, was one of the best days of my life. Straight away he treated us all with so much compassion and respect.”
He listened without interrupting me. He believed my symptoms and could even physically see them with a few simple tests. He told me he could get the tumour out but he was also refreshingly honest, carefully telling us how this was major surgery and very, very high risk. He also gave me steroids, which massively helped to ease my pain and manage my symptoms. Mr D’Urso allowed me to choose when I wanted to have the surgery. He said I could delay it by a month and go on holiday, but that I shouldn’t delay by longer than that, as the longer we waited, the harder it would be to remove. So, I enjoyed a trip to Spain for my mum’s birthday with my mum and my sister, Meg. Being able to go away with my loved ones and chill was so important, although I did spend a lot of time contemplating whether it would be my last ever holiday. I would randomly sit and cry and worry about how my animals would cope without me; no one knew them like me. I had two cats (a sphynx called Amun and a black and white cat called Brain) and three dogs (Peggy, a small white Maltese, Sirius, a Chinese-crested and a chihuahua named Lola) at the time. I fretted that my pets and my loved ones might even get sick themselves from the heartbreak of losing me. I thought about not being able to grow old with Dave. I desperately didn’t want to die but I prepared for the worse.
“I didn't want anyone to have to worry about extra things, so I wrote down instructions for looking after the animals. I made a list of all of my passwords and I even I planned my own funeral and wrote letters to the people closest to me.”
My surgery was on 26 February 2020. The day before I went in, I was feeling so incredibly nervous, knowing just how risky the operation was. My parents, Meg and Dave came along to the hospital and they were each allowed to come into the waiting bay for 10 minutes at a time, before I got wheeled down to the operating theatre. There were lots of tears and hugs when the theatre team came to get me. My sister, in particular, found it difficult. She had written a list of happy memories to read out to share with me, which was lovely. I managed to hold in my emotions until they all left and I was on my own. The theatre team was really nice. They did everything to reassure me, talking to me about Harry Potter until I fell asleep.
My surgery was expected to take 12 hours but it was finished in eight hours in the end. When I woke up there was a lovely nurse by my side stroking my hand and she asked me my name, age, what year it was and where I was and then she squeezed my toes and asked if I could feel anything. The first thing I remember thinking was, ‘I can wiggle my big toe!’ and the relief I got, realising that I wasn’t paralysed, was amazing. Then realising that I could breathe and talk for myself was just incredible. The only difference I noticed was that I couldn’t feel much of my right side but I didn’t care because I was alive! My surgeons came to see me once I was fully awake and were made up to see how well I was doing. Mr D’Urso even came to see me another two times afterwards, to keep checking in. He sat holding my hand with the biggest smile on his face. I remember being on the Intensive Care Unit (ICU) and my family creeping in slowly, scared of how they would find me. They had been told to expect me to be unconscious for a few days, with a tracheostomy fitted. I will never forget the joy and relief on their faces when they saw I was sitting up and smiling. I was still quite high from the drugs and very sleepy, so they didn’t stay too long, to let me rest. When they left, I had a nurse wake me every hour asking me my name, age, year and where I was and to check there were no complications, such as bleeding.
The next day the nurses wanted me to get out of the bed to eat. As soon as I sat up, the room spun and I felt like I'd been smacked in the head, nearly vomiting as I stood up. This was due to the loss of cerebrospinal fluid (CFS) and it building back up. Just one day after my surgery I had my arterial line out, came off oxygen and IV fluids, and had my catheter removed.
“I had my first physiotherapy session and was able to walk up and down the corridor with small steps. I was a little wobbly but I did it. I felt so proud of myself.”
My post-surgery MRI scan showed that Mr D’Urso had managed to remove all of the tumour. I can't thank him and the team at Salford enough for everything they did. The pathology report confirmed that the tumour wasn’t high-grade but due to its location, it would have killed me. The surgeons have given me another chance at life, another chance to live my dreams of working in forensic policing or to be a paramedic. I will never take for granted that I now have the opportunity to make so many memories with my loved ones and the chance to grow old.
I was discharged from hospital less than 48 hours after my operation. I was told the recovery would be long but that I would get there and that I would regain some feeling and strength in my right side. I was given a wheelchair by a lovely man on Facebook, which meant I was able to go out for lunch with my dad and on a shopping trip with my mum. I didn’t overdo it. I'm very good at listening to my own body and knowing when to push myself and when to rest. I couldn’t move my head or neck for a long time and had to move at a snail’s pace to avoid feeling sick. The main thing was that I was alive and that’s all that mattered.
I’ve had mental health illnesses for most of my life. Sometimes these conditions have made me think I didn't want to live. But absolutely nothing puts it all into perspective for you more than when you have that choice taken away from you. I still get my down days; I get mood swings and I still get sad. But I'll never not want to live again. Life is far too precious. If you have love, support and your health, then you have everything. Nothing else is important.
Another thing I have learnt through my own experiences is to always trust your gut feeling, no matter how many people tell you you’re wrong. I feel like I have been fobbed off again and again, when all the time I was suffering with a very serious illness. Thankfully, I was listened to before it was too late. I couldn’t have got through this awful period of my life without my family, boyfriend and friends. All of them looked after me, spent countless hours and days in A&E with me and looked after all my pets while I was in hospital. I know I definitely wouldn’t be here if it wasn’t for my mum’s constant fighting for me. Unfortunately, I also lost my beloved Amun shortly after my surgery. She wasn’t just my cat; she was my soulmate. I believe she used all of her energy on getting me through surgery and healing me but sadly didn’t leave enough to save herself.
“As my tumour was so rare, I made the decision to donate it for research, so scientists can hopefully learn some more about it, which will help patients in the future.”
I have also registered to take part in Brain Tumour Research’s 20 for 20 fundraising campaign, as I want to do my bit to help find a cure for this awful disease. Aside from that, I continue to concentrate on recovering, with the ultimate goal of starting a new career in the future. I may not be able to model or dance as much as I did before but I recently started acting classes, to help rebuild my confidence. I loved it but sadly the classes are now on hold until January, due to the pandemic. I did a live video fire performance on Halloween for Liverpool Horror Club. I’m a Halloween fanatic with an interest in witches and the paranormal, so this 31 October I spent lots of time dressing up in my favourite spooky outfits and taking lots of photos. I remain forever grateful to the medics at Salford Royal who saved my life and I intend to make the most of every single day.
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 Beth’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.