In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Ria’s diagnosis with a glioblastoma multiforme (GBM) grade 4 came completely out-of-the-blue at the age of 23. She has had two resections, including an awake craniotomy, as well as radiotherapy and chemotherapy treatment, partly through a clinical trial. Ria also raised £170,000 to have IO-vac dendritic T-cell vaccine treatment at a clinic in Germany which, although started, was sadly thwarted by the progression of her tumour and coronavirus pandemic restrictions.
Ria tells her story…
I had always been a fit and healthy person until I was diagnosed with a brain tumour. I played football from the age of eight and was selected for the first team at university. I also swam at a high level.
In 2018, I graduated from Loughborough University with a first-class BSc Hons in Sports Management. My dream was to join the police and over a nine-month period I underwent a whole raft of tests, including fitness and vetting and was even fitted for my uniform. I had a start date with the Essex Police in February 2019 so it gave me time to do some travelling in East Africa where I also completed a bungee jump.
Over Christmas 2018, my parents and I went away to Devon. On 23 December, I woke with a severe headache on the right-side. I tried to get out of bed and found I had no strength on my left side and collapsed onto the floor. I was taken by ambulance to The Royal Devon and Exeter Hospital where I had a CT scan. We were told I had suffered a large bleed on the brain and I was transferred to Derriford Hospital in Plymouth. An MRI scan revealed a mass which had caused the bleeding, suspected to be a tumour.
The doctors decided to ‘watch and wait’ for a few days. Meanwhile my older sister, Kaz, who is a trained neuro-physiotherapist, was living in New Zealand at the time. She curtailed a camping trip and booked the next flight home, arriving on Christmas Day. Concerned that I was deteriorating because I was sleeping all the time and progressively losing movement on my left-side, she alerted the doctors. This led to my neuro-surgeon deciding it was time to operate.
On 28 December, I underwent a six-hour awake craniotomy to drain all the blood as well as a resection which successfully removed 100% of the tumour. I don’t actually remember much about the experience, apart from a few vague memories, like being asked if I could move my arms or legs while the surgeon continued to operate.
A few days later, it was a shock to learn from the biopsy results that I had a glioblastoma multiforme (GBM)in my frontal lobe which helps control movement and was given a survival prognosis of 12 to 18 months.
“Having not known anything about brain tumours before, it was completely devastating to hear I had such a poor prognosis. I couldn’t believe that just a few weeks earlier I had been travelling round East Africa with no symptoms, apart from some small flickers in my foot and certainly no headaches.”
I remained in Derriford Hospital for 10 days recovering, before returning home to Essex where my sister helped me with my rehabilitation. Being 23 and fit really helped.
A month after my surgery, I started on six weeks of radiotherapy with adjuvant chemotherapy at Queen’s Hospital in Romford. I had the chemo in tablet form which was OK, but the radiotherapy was much tougher and I lost my hair. On top of that, I was on steroids which changed my appearance so that I became moon-faced, really fatigued and suffered with insomnia. I also would constantly experience a burning smell like an aura around me.
Two weeks after completing my therapy, I was grateful to be accepted onto an immunotherapy trial at Mount Vernon Cancer Centre in Rickmansworth, testing its effectiveness in conjunction with standard temozolomide treatment and comparing its success with standard treatment. It’s hard to get onto the trial because it has to be exactly two weeks after finishing the combined chemo and radiotherapy, but for me the timing was perfect. However, sadly I was randomised to the placebo arm of the trial so it just meant I was on the same temozolomide chemotherapy drug for another six months. It was a disappointment to find out I hadn’t got to try out the immunotherapy drug, even if, I later learned, patients had experienced side-effects from it.
However, I did respond well to the treatment and was even able to regain some normality in my life. I started going to festivals with friends, and getting back into fitness like running and swimming.
For most of 2019 I hadn’t worked while I gradually regained my fitness, but by August, having completed treatment, I took on some temp work and then managed to land an office-based role for Essex Police. I had to go through even more vetting before I started the role, based at headquarters in February 2020. By the time the country went into lockdown because of the coronavirus pandemic, I had only worked there a matter of five or six weeks. However, I was able to continue in my new job working from home and count myself to be very lucky because the team has been very supportive throughout my brain tumour journey.
“I had 10 months of stable scans, so it was a shock when the tumour started to regrow in the same place and I had to undergo further surgery at Queen’s in July 2020.”
Luckily it was good timing, being between the first and second wave of the virus. Again, the surgeons were pretty sure they had managed to remove 100% of the tumour.
“I had around six weeks off work recovering, missing out quite a bit on catching up with friends because I was having to relearn how to walk and regain my strength.”
Up until my surgery I had been going out on five-mile runs, but the surgery meant that all my muscles became wasted again.
I returned to work in August, knowing that my NHS options were limited because I had already received radiotherapy as well as chemotherapy twice. My family and I spent weeks researching alternative treatments and thought that the most promising avenue was immunotherapy, which my NHS neuro-oncologist was unable to guide me on. However, it was impossible to narrow down the options, so with minimal professional direction, we turned to the brain tumour community.
“We found out about a clinic in Cologne, Germany, from another person with a GBM diagnosis and within a few weeks flew out for an appointment with the consultant. The treatment is really expensive so I was forced to start a Go Fund Me page which incredibly raised £60,000 in 24 hours and to date more than £170,000.”
I also have friends who had planned challenges which ended up halted by the pandemic, including a university friend who wanted to walk to Everest base-camp. Various other friends have also set up fundraising pages and raised thousands for my treatment through challenges including running and open water swimming.
In August 2020, I began immunogenic cell death therapy (ICD) to begin to activate my immune system which entailed flying out to Germany for five days every month for one-hour-long daily treatments. During this hour I had to lie on a water bed while a heated plate was held up to the part of my head where the tumour had been. At the same time, I was injected with the Newcastle disease virus (NDV) which aims to seek out and destroy cancer cells.
I had the ICD therapy at the same time as chemotherapy back in the UK and managed to complete three months out of what should have been nine. I was still managing to work whilst out in Germany, although on reduced hours, but was feeling quite isolated from friends and family, although either my mum or sister accompanied me for my visits to the clinic in Cologne.
When it was my birthday in September, a group of my football friends came out to Germany to help me celebrate and we managed to do some sight-seeing on scooters for a few days.
“It was a cruel blow after only three months, to learn there were signs of regrowth again. Clearly the chemotherapy wasn’t working for me so we decided to stop it and have the full immunotherapy dendritic T-cell vaccines earlier than planned to try and slow down the growth.”
I had the first vaccine on 1 December 2020 and felt fine afterwards, but before I had the second, an MRI scan devastatingly showed even further progression of the tumour. I received the results having returned to Germany ready to have the second vaccine just before Christmas. By this time, I was also having seizures, which manifested as a tingling down my left side which I had never had before.
Mum and I read the scan report together. It was very technical so we didn’t understand all of it, but we got the gist.
“There was a lot of progression and swelling, resulting in a loss of movement down my left arm and leg. We were staying in an apartment on the fifth floor where there was no lift, so it was quite a struggle to get to the clinic each day.”
I was determined to have the second vaccine, but was really concerned that my weakness was getting worse. We were also conscious that I didn’t have travel insurance because no one would give it to me, being a high-grade brain tumour patient, and we were very worried about the prospect of me being admitted to hospital far away from home in a foreign country so close to Christmas.
I ended up having a few days of the treatment and an infusion of mannitol to reduce the swelling in my brain before flying home on 19 December without having had the second vaccine to be reunited with the rest of the family and my dog Poppy.
“We got out of Germany just in time because borders were being shut and flights cancelled as the second wave of the pandemic reached a peak. It was very stressful and we were very lucky to get home when we did, otherwise we would have been stuck in Germany for goodness knows how long.”
I couldn’t go back to Germany due to my physical deterioration complicated by the COVID restrictions so the only real option left was PC (procarbazine and lomustine) chemotherapy, which I started on 26 December. I have had two rounds so far and feel I am responding well, while managing to recover movement in my arm, walk again and regain strength generally. Meanwhile, I have built up my hours with the police from two to five or six, retaining flexibility around appointments.
I am due to start my third round of chemo on 19 March and should have had a scan before this. I have been on the anti-seizure drug Keppra since 27 December and thankfully this has helped keep further seizures at bay. If this scan shows the tumour as stable it will be a positive – I have had too many scans indicating progression!
I am walking with just one crutch now and trying not to use my electric wheelchair more than I absolutely have to, as well as trying to reduce my steroids by 0.5mg per week. These make me very tired but also make me suffer with insomnia.
“I am really conscious of how many people there are with incurable brain tumours in the same position as me. In the two years since I started my brain tumour journey, I have met a lot of people who have had to fundraise and go abroad to access alternative treatments unavailable to us in the UK.”
Being in the midst of a pandemic with travel either severely limited or next to impossible, has brought even more obstacles.
I can’t believe that each of us have to do hours upon hours of our own research because there isn’t a central place for brain tumour patients to find information and guidance on what other options may be available to us. It is frustrating that the NHS know so little about what is available privately too.
“My sister has undertaken weeks and weeks of research and we have sat as a family around the dinner table and had some horrible conversations about what, if anything, is going to work.”
It would have been so much better if I had known two years ago what I know now! I wish I had the knowledge that there are different ways to store and freeze the tumour after biopsy. Standard practice is to freeze tumours in paraffin wax, but this makes it impossible for the tissue to be used in an immunotherapy vaccine in the future. I found out months after my surgery that I could have asked for it to be frozen without chemicals so it can be used for future treatments. I also recently learnt that the standard NHS genetic testing is very basic, I now know you can pay privately for more in depth genetic testing to be carried out to look at a more personalised treatment approach. It seems I am always learning things too late; it feels like the current protocols restrict patients’ options before they have even begun their journey. I believe change is needed urgently.
I am ready to talk about my journey with a brain tumour now – I certainly wasn’t in the early days. It has been a rollercoaster journey so far and although mostly I am positive and upbeat, I have felt low at times. Since I have had a job with Essex Police, I have felt much better as it keeps my mind busy although I still have down days. The constant support from my friends and family keeps me going.
“I am working with Brain Tumour Research and campaigning. I have spoken to my local MP who is the parliamentary private secretary to the Prime Minister about the desperate need to increase the national investment into brain tumour research and it gives me a real sense of purpose, knowing I am helping others in my situation.”
I am also supporting the charity’s Wear A Hat Day campaign and am happy that Essex Police are also getting involved.
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 just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.