In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
We are grateful to Emma and her sister, Karen who worked with us in January 2021 to share her story here. Sadly, she passed away on 6th April 2021. We remember Emma as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.
Mum-of-one Emma Selby, from County Durham, has been diagnosed with three brain tumours. Her first diagnosis came in 2017, when doctors discovered an inoperable glioma on her brainstem. Emma had radiotherapy but sadly, in December 2019, she got the dreaded news that a second glioma had been found close to the first. She had further radiotherapy but devastatingly, a third tumour, this time an astrocytoma, was picked up following a scan in June 2020. She has since had chemotherapy and surgery. Emma’s family are fundraising to pay for private cancer treatment, as they say their options on the NHS are running out.
Emma’s sister Karen tells her story…
Emma and I are really close. We have a younger sister, Claire, who is 36 and a 47-year-old brother called Gary. Our whole family is very tight-knit but Emma and I have a special, sisterly bond. We live near to one another in Peterlee and live in each other’s pockets. We love exercise and enjoy going to the gym and training together. When Emma got her first brain tumour diagnosis in February 2017 it was devastating. I have never cried so much in my life.
Emma was 34 when, towards the end of 2016, she began suffering with headaches. She had been back and forth to the doctors three times but the headaches were always diagnosed as a symptom of either sinusitis or labyrinthitis. At that point, we were going to the gym together regularly. Even though she was really fit and strong, Emma started to struggle to do some of the exercises.
“When we noticed that her eye was twitching involuntarily and her mouth was drooping on one side, we suspected that she had had a stroke. Emma spoke to a friend, who used to be a nurse, and he advised her to ask for a CT scan.”
Emma managed to get a scan at The James Cook University Hospital in Middlesbrough on the morning of 31 Jan 2017. Later that day, she got a phone call to say they had found a mass the size of a golf ball on her brain. It was a complete shock to everyone.
Later on, she had a more detailed MRI scan, which revealed it was an inoperable brainstem glioma. A course of radiotherapy was given, which thankfully seemed to stop the growth of the tumour. She wasn’t too poorly with side effects during her treatment but she did lose half of her hair from her ears downwards. She also became very self-conscious of her appearance, as the steroids she was on made her gain weight. She had problems with her speech and would make a strange clicking noise, which sounded a bit like a dolphin. Unfortunately, speech therapy didn’t seem to help.
Emma works in environmental services for Durham County Council and had to take six months off to recover. She also had a year or so off the gym. Gradually, however, Emma began to live a normal life again, spending time with her son Thomas (now 14), her partner Keith and returning to the gym with me, her best gym buddy! She continued to be scanned regularly to check for any changes in her brain. In December 2019, we got the dreaded news that a second tumour had been found close to the first. The doctors couldn't decide the best course of action to take, as they were worried about radiating the same area twice. Eventually, they decided to go ahead with a second course of radiotherapy.
“We were shocked and disappointed to discover that her second brain tumour had been missed on two previous scans.”
Emma’s radiotherapy was due to go ahead in March 2020 but frustratingly, due to the outbreak of COVID-19, her treatment was delayed. It was a really unsettling time. Up to that point, she’d coped really well and just got on with it. The uncertainty made her quite upset.
When Emma went for another scan at the end of May, her worst fears were confirmed that a third tumour had been found. This time it was a high-grade astrocytoma in her cerebellum. This shocking diagnosis was followed by three rounds of chemotherapy, which started in July. Sadly, the chemo didn’t work. We were told it was because of the blood-brain barrier, which prevents the passage of toxic agents (and some drugs) into the brain. One positive was that she stayed fit and well during her treatment, managing three workouts a week and even climbing mountains! She was tired but suffered no sickness and continued working full-time at the council.
“Since the beginning of Emma’s brain tumour journey, I have dedicated a lot of time to researching treatment options both in the UK and abroad.”
As part of my research, I got in touch with Professor Susan Short, a consultant in clinical oncology at Leeds General Hospital. When Emma got her third brain tumour diagnosis, I reached out to Professor Short again and she advised us to ask for a biopsy, to find out more about the astrocytoma. The team at James Cook thought it would be too dangerous but then changed their minds and said they could do it but that we would have to wait for six weeks. We were worried that the tumour could double in size during that time. Eventually, she had another scan and they did the biopsy in October 2020.
Emma was left with significant physical challenges following the biopsy, as she suffered a build-up of fluid on her brain. Her speech was badly affected and she couldn’t move her arm. Her jaw hurt for weeks and her face was numb. Her balance and coordination were affected too. It was horrendous. We were told that her treatment options on the NHS were running out and so, more determined than ever, I continued researching for a lifeline elsewhere. My research led me to an Immucura clinic in Spain, which offers immunotherapeutic dendritic cell therapy (DCT) – a drug-free treatment which extracts the patient's blood to be medically altered to make it “super-fighting”, before it is re-injected back into the body.
“The treatment, which could be carried out by a team from London, who were contracted by the clinic given the ongoing coronavirus travel restrictions, costs around £26,000 per cycle plus £4,500 for the follow-up injections. We were told she would need three cycles.”
In order to help pay for this costly treatment, I set up a GoFundMe page in a bid to raise around £90,000 needed to give my sister the best possible chance of surviving. With the help of our parents Anna and Victor, and the wider family as well as friends and colleagues, we are delighted to have raised £28,000 to date.
In the days leading up to Emma’s first immunotherapeutic treatment in early December, her condition was really deteriorating. On 12 December she had an MRI scan, after which her pain was so severe, that she went straight to A&E afterwards. Sadly, she was left waiting in A&E in a wheelchair for hours, all by herself due to the COVID-19 restrictions. Eventually, she was sent home with paracetamol, having been told nothing was showing on her scan. A phone call three days later informed us, however, that she had suffered a bleed on the brain.
“She was encouraged to go to hospital by ambulance but we knew if she went, she would not get her first dose of the DCT treatment, which was due the next day. So, Emma bravely decided to struggle on at home for one more night.”
After waiting anxiously overnight with Emma more poorly than ever, we were so relieved to see the lovely, smiley nurses arrive to administer her treatment. It was the best feeling in the world. They tried to do everything as quickly as possible, so that we could then whisk Emma off to hospital to be given the pain relief she needed and to assess the bleed. When she arrived at hospital, they said they would put her on a drip but after two-and-a-half days, that still hadn’t happened and her pain wasn’t under control. Unhappy with how she was being treated, we asked for a referral to the Royal Victoria Infirmary (RVI) in Newcastle but it was refused. One of the things we were particularly cross about was that knowing that my parents and I were on our way to visit, Emma’s consultant went to see her and told her she was dying and that there was nothing else they could do. They even discussed signing a Do Not Resuscitate. She was distraught and we just couldn’t understand why she was given this devastating news when she was on her own.
When we arrived, mam and I got the chance to speak to her consultant and were given more details. It turned out that the bleed had not been from the biopsy but from the tumour itself, which was growing quickly. We were also told there was nothing left in terms of treatment and that Emma could go to a hospice for her final days. I strongly disagreed and told them they were to sort her pain medication out and that we would stay with her until she could be brought her home. I asked again for a referral but the consultant was adamant that a second opinion elsewhere would only reiterate what she was telling us. I refused to give up asking for the referral and thankfully, that night, a nurse came in and told us an ambulance had been arranged to take Emma to the RVI. Our prayers had been answered! We drove there at 4.30am, followed by the ambulance.
“When we arrived, we were put in a family room and surprising things started to happen. Emma was given pain relief, then a nurse returned to give her an IV for fluids, then a blood test, and finally a surgical gown was brought in.”
I asked why Emma would need a gown and to our amazement we were told that she was having surgery that afternoon. We couldn’t believe it. Her surgeon, a big, tall man called Mr Patrick Mitchell, came in and said, “I’m going to remove this tumour”. He said that the surgery may result in something called posterior fossa syndrome, but that she could recover from that in time. We left her at 3pm and she was out of theatre by 8pm. By 11pm she was sitting up in bed having tea and toast. Mr Mitchell had managed to removed 90% of the tumour. He also said that if it had been left another 24 hours, she wouldn’t have survived.
Emma was on the High Dependency Unit (HDU) for two days and then, as she was recovering well, she was moved onto the ward. Visits continued to be restricted, due to the pandemic, so we were keen to get her home as soon as she was well enough. We were thrilled that at 7pm on Christmas Eve she was able to be discharged in time for Christmas. Her speech was much better than it was pre-surgery and her headaches were gone too. It felt like she had been given a second chance.
Meanwhile I was in touch with the Immucura clinic in Spain, as I was worried the DCT would be affected but they were more than happy to continue and said it would not change the effectiveness of the treatment. They said, in actual fact, it would aid Emma’s recovery.
After Emma made it home in time for Christmas, the rollercoaster continued, when we got the news that she had caught COVID, meaning we all had to spend the rest of the Christmas holiday apart. Emma’s team at the RVI recently had a multi-disciplinary (MDT) meeting about her case, so we are hoping for an update soon, and we have been told her MRI has also been brought forward to the 22 January, which will reveal more about the success of the operation. We still have a massive fight on our hands with two tumours remaining and the possibility of more surgery to remove the 10% of the astrocytoma. But Emma is amazingly strong. She is like superwoman! She’s my sister, my best friend, and my motivator. I am committed to continue crowdfunding to try and hit our target and help ensure Emma is here for as long as possible.
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 Emma’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.