Dave Schofield

4 min read

Dave Schofield, of Stratford, East London, was diagnosed with a rare anaplastic ependymoma during the COVID-19 pandemic in May 2020 after experiencing left-sided weakness. The 34-year-old, who is on long-term sick leave from his job as head of technology and analytics for the Santander Cycles scheme, has undergone two debulking surgeries, radiotherapy and three types of chemotherapy. Sadly, he has now exhausted all treatment options and has been told he could have just six months to live.


Dave tells his story …

I was diagnosed a couple of months into the first COVID-19 lockdown, in May 2020. Prior to that I was a very active person. I cycled to work almost every day, I ran regularly, at least 5km a week, and I played five-a-side football. I was also very sociable and often met friends down the pub, but alcohol is something I’ve since given up.

Diagnostics carried out following a biopsy of my tumour revealed I have a grade 3 anaplastic ependymoma, which is more commonly found in children, but I was originally diagnosed with a glioblastoma (GBM).

“What I have is rare, so there’s limited research on it, but its prognosis appears to be around five years compared to 12-18 months for GBM; that’s the good news.”

Unfortunately, chemotherapy isn’t particularly effective against anaplastic ependymomas and that has certainly been the case with me. I’ve tried three different types of chemo over the last 12 months and none have helped slow the growth of my tumour. I’ve now exhausted all my treatment options and am effectively on the wrong side of the journey towards end-of-life.

“My consultant has told me I could have as little as six months left.”

As well as the brain cancer I now have, I’ve previously fought both thyroid and kidney cancer. As a twin with two young nephews, the question of a genetic link between these three primary cancers was a cause of much anxiety, but, having undergone genetic testing, I’ve been able to rule out any known link between them. The assumption is the six months of chemotherapy I had after developing a Wilms’ tumour and removing a kidney at nine years old, left me predisposed to cancer in later life. However, I think I’ve been able to deal with my most recent diagnosis more stoically as a result of having had cancer before.

“My brain tumour is on the fourth ventricle, near the motor strip on the right side of my brain, so my symptoms have primarily involved muscle weakness on my left-hand side.”

I first realised something was wrong when I lost the use of my left foot, ankle and toes, which caused me to hobble about a bit. Then I began losing dexterity and grip. I found I couldn’t hold a toothbrush or do exercises so easily. I’d been doing press-ups and crunches in my spare room and went from being able to do about 50 at the start of the pandemic, to less than 10 three months later.

I went to see my GP and was referred to a urologist because of the kidney cancer I’d had previously. I was going to have to wait eight weeks for that appointment, but during that time my symptoms worsened considerably and the sister-in-law of one of my best friends, a doctor who’d just finished a rotation in neurology, told me to go to A&E. I went to the Royal London Hospital in Whitechapel on the Friday of the May bank holiday weekend and was attended to by about seven nurses and five doctors because it was so quiet, which made me feel quite special.

After having a CT scan, I was given the frightening news that I had a lump in my brain measuring 5.7cm in diameter. A&E doctors aren’t neuro specialists but they told me I likely had a low-grade meningioma, which could be operated on. I was admitted and remember feeling really joyous and grateful for life that night. However, when I had my MRI scan three days later, that didn’t turn out to be the case.

“Being told my tumour was more likely a GBM was a huge shock and it was then my emotions hit rock bottom.”

I had surgery the following day and it went well, with 70% of my tumour being debulked. I was up and walking within 48 hours and, whilst not being able to have visitors was frustrating, the pandemic had got me used to calling friends and family and talking to them on Zoom, so I was better prepared for this than I might otherwise have been. I also had a lot of care packages left for me during my stay in hospital, which made me feel very loved and supported.

I recovered from surgery well and went from not walking at all to running 5km within a few weeks. The original plan was for me to start combined radiotherapy and chemotherapy but after my tumour was rediagnosed as an anaplastic ependymoma, knowing that chemo was unlikely to be effective, I instead had six weeks of radiotherapy at the Royal Marsden Hospital, in London. I was immunocompromised and unable to mix with many people but everyone was still in lockdown, so I didn’t feel I missed too much.

“My type of tumour typically recurs every 18 months and, true enough, in November 2021, my three-month scan showed progression.”

I underwent another debulking surgery followed by targeted high-dose radiotherapy known as gamma knife treatment, but around the spring of 2022 I noticed my physical symptoms progressing. This would have happened eventually, but it’s thought the initial weakness was caused by necrosis or scar tissue from my gamma knife treatment.

“I managed to go travelling with my wife, Emily, in 2022, but I did have to take a walking stick, and it definitely got worse whilst we were away.”

I’ve since lost the use of my left arm and hand, which is quite frustrating because I was left-handed. However, with the aid of the walking stick, I can throw my left leg forward and balance, so I can still move around, just not to the extent I could previously.

Emily and I returned from Central America so I could attend my next MRI scan, the results of which forced us to curtail our plans to go to Australia and New Zealand. We managed to visit South East Asia and Indonesia but I needed to return to start chemo, which was unfortunate as I don’t think I’ll ever get to Australasia now.

In December 2022, I started taking temozolomide (TMZ), then I switched to lomustine and finally to carboplatin. None have proved effective against my tumour, which is continuing to grow, resulting in considerable swelling. Since last October, this has caused my symptoms to become more varied. I was admitted to hospital for 10 days after vomiting so my mineral levels could be monitored and I’m now experiencing hearing loss and a significant decline in my eyesight.

“Worryingly, I’m now having to wear glasses, but an eye test carried out less than two months ago found I had 20/20 vision.”

Recently, I’ve been suffering from increased fatigue; managing that is probably my biggest consideration currently. I also had my first seizure last week. Thankfully, it happened whilst I was in bed with Emily and she knew what to do. Having her talk to me and hold my hand helped me feel really comforted, but spasming for three-and-a-half minutes has caused me considerable fatigue, particularly with the muscles on my left-hand side, which I don’t use anymore. I’ve also noticed the effect on my rib cage quite acutely and am finding I’m having to take more frequent breaths when I talk.

“The progression of my tumour has meant I’ve finally had to give up work.”

I’ve always been someone who’s worked hard and throughout my illness I only took time off for surgery, but the fatigue has really started to kick in. Prior to October, there were some weeks I didn’t even think about cancer, but the last few months have been more difficult. I’ve probably cried more than ever before, but crying’s not a bad thing and I’m lucky to have people I can talk to.

No one wants to have brain cancer, but outside of that my life is pretty good. I have the best wife and friends and I’ve done some really amazing things in recent years. In fact, in some ways, the three years since my diagnosis have been the best of my life. I’ve done so much, including marrying Emily last December, which was incredibly special, and travelling with her for more than six months in 2022. As well as all the exciting adventures we had, we met people from all over the world, some of whom we’re still in touch with today.

“I’m very grateful for the life I have and know that loving and being loved are the most important parts of it.”


Dave Schofield

February 2024


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 since records began in 2002.

Brain Tumour Research is determined to change this.

If you have been inspired by Dave’s story you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy

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