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I refuse to let my incurable brain cancer define me

Natalie Paul shares her story in Brain Tumour Awareness Month.

By Carol Dyce

“I refuse to let my incurable brain cancer define me – I am determined to marry the love of my life and choose to be happy”

Despite being given a year to live after her brain tumour diagnosis three-and-a-half years ago, Natalie Paul, 30, from Warwick vows to live life to the full.

Now she is sharing her story in Brain Tumour Awareness Month (BTAM) to be one of The Brain Tumour Charity’s Voices For Change to raise awareness about brain tumours – the biggest cancer killer of under-40s in the UK.

Standing in front of the mirror, Natalie Paul smiles at her reflection wearing the wedding dress of her dreams.

She may look like any other bride-to-be excited about her big day and embarking on married life with her soul-mate, but her wedding is an extra special milestone, after defying the odds.

For in September 2017, Natalie was told she could have a year to live after being diagnosed with a glioblastoma, the most common aggressive brain tumour in adults.

Now, in between trips to Germany for pioneering treatment at a Cologne clinic in the hope it extends her life, Natalie is busy planning her wedding with fiancé David Harding, 45.

“I am so excited I am going to be David’s wife and our wedding gives me something positive to focus on,” said Natalie, a food development technologist from Warwick. “David has been there for me every step of the way since my diagnosis. Cancer has put so much of my life on pause and why should I let this disease rob me of what any other 30-year-old wants? Getting married to David feels like we’re moving forwards. We’ve booked the hotel for the wedding and my dress is a real princess number as I’m a huge Disney fan.”

And Natalie wants to incorporate a romantic scene from her favourite film, Tangled, when lanterns are released into the air to the song I See the Light.

“I listened to it as I was wheeled to theatre for my first brain surgery,” she said.

They have set the date for October 1 in the hope Natalie will be well enough after her treatment and she and David want their grandparents to be there.

“We want to give our families something joyful to look forward to,” said Natalie. “It’ll be a celebration for everyone who has been there for me and my family throughout the tough times.”

Since her diagnosis, Natalie has had two brain surgeries, six weeks’ radiotherapy and two courses of grueling chemotherapy.

In December, 2020, Natalie received the devastating news that her chemotherapy wasn’t working anymore and her tumour was growing. She is now privately funding immunotherapy and electro hyperthermia treatment at a Cologne clinic.

The family set up a go-fund me page to raise money for treatment, which costs £56,000 a round.

They also have to pay £1,800 a trip on top of that due to new regulations requiring people to have coronavirus tests before leaving the UK and on days two and eight when they get back.

Natalie has just finished her second round of treatment and will go back in another three weeks’ time making the journey by car in a bubble with her family, as she isn’t well enough to travel alone, to avoid the risk of Covid transmission on a flight.

The Brain Tumour Charity is calling on the government to provide free COVID-19 testing for families affected by an incurable brain tumour who are currently travelling abroad for cancer treatment.

Natalie’s nightmare started on September 1, 2017. “Life seemed pretty sweet and on track,” she said. “I was happy with David after meeting him at work two years ago when we were at a food company, and I’d just started my dream job of creating cakes for coffee houses. He was a cheeky chap and we hit it off straight away. We were friends first before we got together.”

Natalie and David were staying at her parents’ house the night before they were due to fly to Nice for his first holiday with them.

“I was excited about going away with my mum, dad, brother Michael and his girlfriend, Holly,” said Natalie. “I was upstairs getting ready to go to the pub joking that there wasn’t any Jack Daniels at home. Suddenly, my left leg started shaking violently and then I was shaking all down my left side. I was frightened and got down on to the floor as thought it would be safer. I banged on the floor trying to attract someone’s attention and my mum was first through the door, followed by my dad and David.”

Natalie’s mum ran to get a doctor neighbor who said Natalie was having a seizure and to call 999. David went in the ambulance with her and her parents followed in their car to their local hospital.

“By the time I got to hospital, my left-hand-side was numb,” said Natalie. “A doctor said I had a migraine and was going to send me home but another doctor insisted I had a brain scan. Thank God he did, otherwise I would have gone home and got on a plane the next day. I had a CT scan and doctors described it as looking through a stain glass window – they could see there was something on my brain but not clearly.”

Natalie was kept in overnight and had a more detailed MRI scan the following morning, which confirmed she had a brain tumour.

“I was shocked – I never dreamt it could be a brain tumour,” she said. “I just said, ‘get rid of it.’ I couldn’t stand the thought of this thing growing inside my head.”

Five days later, Natalie had a five-hour operation when surgeons removed 90% of the two cm mass. “My left-hand side was weakened but I rebuilt strength quickly when I was back at home,” she said.

But two weeks later, the biopsy results dealt a devastating blow. They revealed that Natalie had a grade four glioblastoma, which has an average prognosis of 12-18 months.

“Doctors said that without surgery I would have been dead within three months,” said Natalie. “I instantly hit google to read about glioblastomas, although doctors told me not to. As I scrolled through all the worst case scenarios, I couldn’t take it in. I think I was in shock and hadn’t even started to process that I had a terminal disease.”

A few weeks after surgery, Natalie went to a support group at the hospital. “A man said he felt he was lucky he was still alive six years after diagnosis and I just sat there, thinking I’m only 27 – I want to live longer than four years, it brought me down a bit and I didn’t go back as it wasn’t for me. I’m lucky that I’ve got so much support from David, my parents, family and friends. David is always there for me. We both have our down days and take it in turn to keep each other’s spirits up. If I talk about I may not be around for many years, he encourages me to focus on the here and now. That’s how I get through – always moving forward – and I want to pack in as much as I can. Covid and the lockdown has been so frustrating as it has stopped us making memories doing all the things we love doing together like travelling, walking and socialising.”

Natalie coped with her first round of chemotherapy well. “It helped that I was young and healthy but I started losing my hair due to radiotherapy, so I shaved it off,” she said.

By August 2018, she was able to go back to work and move from her parents’ house to set up home with David.

“I had to change jobs and work part-time but it felt like getting normality back,” said Natalie, who calls her tumour the Great Big Monster and charts her story in a blog.

After two years of stable scans, Natalie’s tumour started growing again in December 2019. “Ironically, I’d just got my driving licence back – a huge part of regaining my independence – and drove myself to hospital for my MRI but my happiness was short-lived when I was told my scan showed disease progression. I was devastated and burst into tears. I was back on the rollercoaster but no way was I giving up.”

On February 4, 2020 – World Cancer Day – Natalie had more surgery. This time, she was more severely affected on her left-hand side and couldn’t walk, use her left arm or sit up by herself.

“After two weeks in hospital, I discharged myself, although I still couldn’t walk,” said Natalie. “But for my own mental health I needed to be at home to help me remain positive. I managed to have some neuro physio sessions before Covid and continued them over Zoom during lockdown.”

When the biopsy results revealed that mainly dead tissue had been removed during surgery, her consultant decided no treatment was needed for the time being, and her body could have a rest. But three months later, a scan showed reoccurrence of the tumour and she was started on a second round of chemotherapy.

“I managed three cycles but suffered severe side effects of nausea, sickness and fatigue,” said Natalie. “I didn’t even have the energy for physio.”

In September 2020, when Natalie was feeling better, she and David went for a break in Edinburgh.

“We were out for dinner and I thought David seemed a bit nervous, then he started talking about how much we’d been through together and got down on one knee, presenting me with a ring. Although we’d talked about getting married, I wasn’t expecting a proposal and I was surprised. It took me a few minutes to answer but I blurted out, ‘Yes!’ Everyone around us was clapping and cheering and a waiter brought us over a glass of champagne to celebrate. It felt surreal but very romantic – I felt like any other 30-year-old, not just a cancer patient.”

“David said he’d been waiting for the restaurant to quieten down to pop the question and he wanted to do it before dessert as he’s got a sweet tooth and wanted to enjoy it!”

Back at the hotel, they Facetimed Natalie’s family to tell them their happy news, although David had already asked her dad for her hand in marriage.

In December 2020, Natalie’s cancer progressed. “David drove me to A & E after I suffered terrible pins and needles down my left side,” said Natalie.

She had a CT scan which revealed swelling in her brain and she was put on steroids to reduce this. But an MRI scan showed more swelling and that her tumour was getting bigger.

“I had to face the brutal news that my treatment was no longer working and I was running out of viable NHS options, I could have tried going back on chemo every day but I couldn’t face that as it made me feel so sick. What’s the point of living longer if I feel dreadful? It’s about quality of life, not just extending my life.”

After researching and reading on her Facebook groups about people travelling abroad for treatment for glioblastoma, she discussed it with her consultant and decided that was her best hope of prolonging her life. 

“I’ve come this far and I’m not giving up now,” said Natalie. “Since we set up the go fund me page, I have been blown away by people’s support and I can’t thank them enough. I am pinning everything on this treatment as you have to focus on the positive and look forwards. That’s why getting married to David is so special for me and, despite everything, we choose to be happy.”

David said: “Marrying Nat means the world to me – she’s not just my fiancée, she’s my best friend and I don’t know what I’d do without her. She’s my rock and has been there for me when I needed her most and now it is my turn to repay her. Her diagnosis has brought us even closer together and her strength and determination makes me feel we can take on the world together. On our wedding day, I will be the happiest man on the planet knowing how lucky I am to have Nat by my side for the rest of our lives.”

David Jenkinson, The Brain Tumour Charity’s interim CEO, said: “We are very touched by Natalie and David’s story and send them our warmest wishes as they plan their wedding. We are hugely grateful they are sharing their story in Brain Tumour Awareness Month to raise awareness as brain tumours are the biggest cancer killer of children and adults under 40. Despite that, over £500m is spent on cancer research in the UK every year, yet less than 3% is spent on brain tumours.

“Throughout March, we are urging our wonderful supporters, like Natalie, to share their stories and to sign up to BRIAN, our ground-breaking app and databank, whether living with a brain tumour, caring for someone who is or working in health care or research.

Glioblastomas, which are the most common form of high-grade brain tumour in adults, have very poor survival rates, it’s heart-breaking that, for so many, progress just isn’t yet happening fast enough and there are still few treatments options available – often leaving them faced with difficult decisions to travel abroad for experimental therapies to try to improve or extend their lives.

Travelling for treatment can already be an extremely distressing time and so we are asking the Government to urgently clarify whether COVID tests could be provided for free in these instances for families affected by incurable brain tumours.”