In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Father-of-two Edward Lewis, who lives in Bishop’s Stortford, was just 35 when he was diagnosed with an incurable Oligodendroglioma. It came after experiencing three years of focal seizures, which were misdiagnosed as panic attacks. He was given anti-depressant medication for anxiety, but they failed to work. In June 2022 he had a full tonic-clonic seizure and the tumour was discovered following a CT scan. Having been through surgery, radiotherapy and chemotherapy, he is determined to raise awareness and funds for Brain Tumour Research and has signed up to the London Marathon 2024 with his brother and sister.
Edward tells his story…
During 2019, I started experiencing strange sensations where I was occasionally unable to speak for about five to 15 seconds at a time. It didn’t stop me from doing anything else but I could be in a high-pressure situation, like delivering a presentation at work, or reading a bedtime story to my young daughters and suddenly I couldn’t get a word out.
I went to my GP but was told it was a form of panic attack. I looked up the symptoms of panic attacks and it felt nothing like that.
“I went back to my GP on several occasions but they reiterated it was a form of panic attack, diagnosed me with anxiety, and placed me on anti-depressant medication.”
The medication didn’t stop these episodes and in retrospect, I should have done more to get to the bottom of what was happening. As it turned out, these episodes had been focal seizures.
In the early hours of 14 June 2022, I had a full tonic-clonic seizure while in bed.
“I don’t remember any of it, but afterwards my wife Gayle told me how traumatising it was for her.”
Apparently, I was grunting and making violent physical movements. Our youngest daughter, Larna, was only two at the time and was in bed with us as well. She woke up and asked Gayle ‘why is Daddy dancing?’ – I really hope she doesn’t remember seeing me like that. The seizure lasted about two minutes and Gayle phoned 999. Luckily, I was at home, safely in bed with my wife when it happened, I know it could have been much more dangerous if it had happened elsewhere.
All I remember is getting up needing to go to the toilet and Gayle telling me to sit down because the paramedics were outside and she needed to let them in. It was about 3am. They asked me where we’d been on holiday recently, and what month it was and I just didn’t know, I couldn’t think. I completely blanked. I remembered once we were in the ambulance and was relieved to tell them ‘we’d been to Kefalonia, and it was June’ and they said not to worry; that the sudden memory loss was common after a seizure and was a short-term symptom.
I was taken to the Princess Alexandra Hospital in Harlow and admitted through A&E, where they performed an initial head CT scan.
“Immediately they came back and said ‘we’ve found something, it could be a brain tumour’.”
The mass was quite large, about 6cm across and right in the middle of my brain. It’s not a specialist hospital and there was nobody there who could really tell me any more about it or answer my questions fully. They did, however, send me for a second full body CT scan to check it wasn’t a secondary growth. That thankfully came back clear. I was in hospital about four days, waiting for an MRI scan. At which point I was told they believed it could be an oligodendroglioma, but that would need to be confirmed by the specialist hospital.
They referred me to Queen’s Hospital in Romford, which has a specialist neurology and neurosurgery team. Initially I had no contact with the team at Romford until the week of my operation, due to various members of their team being off work. This was the hardest time for me, as all I wanted was to speak to someone who could give some answers. I looked the tumour type up online, but all you seem to read is worst case examples, which just sets you up with unhelpful thoughts. Luckily for me, a distant family member is a neurosurgeon and I was able to speak to him about everything. From what I told him he was convinced everything was going through the correct channels and I found that really reassuring. Fortunately, I had a huge amount of support from my family as well. My parents live on a farm in Wales but they came up to help with the children and attending appointments. They, together with my wife’s family, were fantastic.
Once I finally spoke to the team at Queen’s, they talked me through the treatment options. I had three choices; leave it and see what happened, have a biopsy to try and determine exactly what tumour type it was, or have surgery to safely debulk the tumour and determine the tumour type from all that was removed. I opted for the surgery as advised, and had the operation booked in within three weeks of being referred.
I spoke to my surgeon through an online meeting to brief me about what was ahead. My wife Gayle and my dad joined me too, just to make sure we all remembered what was said and raised all the questions we had prepared – it was a lot to take in.
My surgeon said the tumour was incurable and could not be fully removed because of its location and proximity to vital blood vessels in the middle of my brain.
“He told me they were aiming to remove about 60-70% and said ‘if we go too hard, you could have a stroke, wake up a completely different person, or not wake up at all’.”
I had the operation on 1st July and initially the surgeon thought it had been more successful than anticipated. They believed they’d got about 90% of it, but then a follow-up scan showed it was only 70% reduced, which was a bit disappointing. The surgeon explained that as they operate the brain moves around and dips, so there was a section of the tumour they couldn’t see to reach. There was talk about maybe going back in for a second operation, but then I got an infection, and they felt another surgery would risk further complications.
Instead, they started me on radiotherapy in August for six and a half weeks, which went fairly well. A scan just before the treatment, showed the tumour was already growing back, but after radiotherapy that growth area had shrunk. That was really good to hear.
Then I started PCV chemotherapy in November on a six-week cycle. I had some of the drugs administered at hospital initially and then 10 days of the drugs at home. It hit me quite hard.
“I was sick all night after my first round and ended up in A&E a couple of times with pains in my veins and in my legs.”
Luckily it was all fine, but then I had a full body reaction to one of the drugs, procarbazine, and came out in a horrendous rash.
I came off that drug but carried on with lomustine and vincristine for subsequent chemo rounds. I was concerned I was having less of the treatment drugs than was optimal, but the specialists said it was OK, and I couldn’t continue if I was having allergic reactions to it. I did find the next rounds of chemo were more manageable without it. I experienced the reduced immunity and was very susceptible to colds and things, but was able to carry on for six cycles of that. The latest one was on 9th June 2023, and I’ve been told that’s the last of it now.
I’ve been having MRI scans at Romford every three months, and they have all come back stable – no change. I’m a bit disappointed the tumour didn’t shrink further with the chemo, but the best we can hope is that is remains stable for as long as possible. If things change again, we can look at more surgery and chemotherapy. Now I’m on a watch and wait period, which in some ways feels like I’ve given up actively trying to beat it. But actually, it will also give me a chance to feel well again and get life back on track.
We’ve tried to keep things as normal as possible – it was difficult obviously as we were really stressed initially. But when we got a treatment plan from Queen’s we felt more in control of the situation.
“I think we’ve done a good job of keeping life going and keeping the girls happy.”
I’ve really struggled with what to tell the girls; Larna is only three and Darcy is four. We’ve just said that I have a bad head and I need to go to the doctors a lot. Obviously, I looked different when I got out of hospital; there was a lot of swelling and the girls told me I looked funny and enjoyed putting bandages on my head. I bought some self-help books on how to tell them about everything but I don’t feel they are always very helpful or age appropriate. They were only two and three when we found out so I feel it’s a conversation for when they are a bit older.
Now I’m looking forward to getting back to doing fun things with them. I’ve been avoiding swimming pools and things because of the risk of catching bugs so it will be great to get back to being a bit more involved in that sort of stuff, recharge and enjoy being a dad.
People have been surprised with how positive I’ve been. When I was in hospital, I did have a moment where I thought ‘this is so unfair, I’m the youngest person here’. But actually, there are people much younger than me going through this.
“When I spent a week after surgery in a neuro intensive care ward I realised I was actually the luckiest person in there.”
Some people couldn’t communicate or move at all, whereas I was completely with it and mobile. It hit home, and I realised there were worse situations I could be going through.
Practically, the toughest thing to deal with has been the loss of my driving licence as a result of the tumour and seizure. I’ve had to rely on my dad and father-in-law a lot to get to and from appointments. My wife, brother in London, friends and my sister have all been amazing as well.
I’m a project manager in civil engineering and was off work in June 2022. My employer has been really supportive and I had colleagues visiting me as well which was really nice. I started back to work in January this year in a phased return in a different role and have been working remotely. As of May I have been working full time, and in July I will be going back to my old role and returning to the office on a hybrid basis. I’m really looking forward to that, having another piece of normality back again.
I was given a prognosis of 10-12 years from the oncologist, which was taken from a statistical average.
“But I refuse to be average in this, and I will do everything I can to beat that.”
I’ve been trying to keep fit at home and as well as giving me something to focus on, I’m in better shape now than when I was diagnosed. I’ve taken up some holistic healing, ice baths, put myself on a healthy diet and invested in a hyperbaric oxygen chamber for the house. I know there’s no magic cure but if there’s something that might give me an extra chance I’ll give it a go, for the sake of my girls. In 10 years, they’re going to be at a vulnerable age and my biggest fear is letting them down. My wife tells me not to be silly, but these things do go through your mind.
I’ve also been put in touch with another patient, a few years further down the line in his brain tumour journey, but with the exact same type of tumour as me. He is having immunotherapy in Germany. As and when my tumour returns, I may crowdfund to do to that. Before I do though, I want to raise money to help other people first, and fund research to get these breakthrough treatments in this country.
When I decided I wanted to raise awareness and money for Brain Tumour Research, I signed up for the London Marathon 2024.
“As soon as I got a place confirmed, I went back to Wales and told my brother, Chris, and sister, Emma, and they immediately said they’d do it with me.”
That was amazing; we’re a very tight-knit family and they didn’t want me doing it on my own. Now we have a JustGiving page set up, and it’s doing really well.
We will all be running for this fantastic cause, helping Brain Tumour Research to accelerate finding a cure. I am also supporting the charity’s petition to increase research funding, in the hope of prompting a parliamentary debate. We need to reach 100,000 signatures and the charity is calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
This is so important and I’m asking everybody I know to sign this and help give hope to other brain tumour patients.
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.
Together we will find a cure.