In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
James is a 39-year-old self-employed television sound engineer, who grew up and lives in south east London, where he counts himself lucky to be surrounded by lots of close family and friends. Previously a busy professional, with a hectic social life that came with his career in TV, everything changed for James in September 2018, when he was diagnosed with a brain tumour. Operations, radiotherapy and chemotherapy followed, and nights out to the pub during work trips away have since diminished. In November 2019, approaching the end of his planned 12 cycles of chemotherapy, James started writing a retrospective blog, to document his brain tumour story so far. He hopes by publishing his experiences he will help inform, entertain and inspire others who have received a similar diagnosis.
Here is James’s story…
In my first job interview to work as a sound engineer in 2005, I was asked ‘do you like beer and curry?’, which gives you a good idea of the kind of lifestyle I have led for the past 14 years or so. So, in August 2018, when I woke up in the middle of the night with severe pins and needles in my right arm, I didn’t really think anything of it. I was tired and felt disorientated after a long day at work followed by a few drinks. The next morning, I called my GP (the excellent Edith Cavell Surgery in Streatham Hill), who listened and told me to call back if it happened again. Five nights later, it did happen again. But this time the tingles in my right arm were more intense, creeping up my forearm, as my fingers jerked uncontrollably. Unfortunately, this time, hovering over the toilet, I passed out. When I came around, I was lying on the bathroom floor tangled in toilet roll with a banging headache, a sore tongue (from biting down on it) and no idea of what had happened. I have since learned that I had suffered a generalised seizure. My body stiffened, my head rolled back and I was out for the count for the best part of three minutes. I don’t remember the feelings I had – it was something I had never experienced before and it happened so quickly.
With hindsight, jumping back in bed and going to sleep probably wasn’t my best move but I did have the good sense to call NHS 111 when I woke up in the morning. They advised me to go straight to the Emergency Department at Kings College Hospital (KCH).
“I called my family, jumped on a bus and made my way to Denmark Hill, blissfully unaware that my life was about to change forever.”
I hadn’t been to hospital or even to see a doctor for 10 or 11 years. Not in a macho ‘I don’t need to see a doctor’ way; I just never got ill. Unless you include hangovers, of course. I worked on an early series of Channel 4’s award-winning documentary ‘24 hours in A&E’, so I was familiar with the ‘majors’ waiting room – I was just looking for somebody with a clipboard and a headset to come and mic me up! My mum, Jan, and sister, Jo, had joined me and with my loved ones in tow, I was put on a Pabrinex (Vitamin B1) drip, my alcohol intake having raised a few eyebrows. Could the answer be as simple as that?
I had an x-ray of my head and neck and then a CT scan. I belie anyone in that situation to not get all ‘Jessica Fletcher’ in ‘Murder, She Wrote’ and assess the radiographer’s body language to try to second guess what they can see. Fruitless, yet inevitable. I stayed in hospital for observation overnight. There wasn’t much in the way of information from the nurses and doctors, as the scan results were not available. A computer processes the information, which is then analysed by a radiologist, which explains why the radiographer was so neutral in expression.
“At this point, it was very easy to convince myself that something was drastically wrong, as they seemed to be doing so many tests. The mind is a powerful tool. I just did what I was told and I was told it was time to get in the wheelchair to go for an MRI scan.”
The scanner was a long, claustrophobic tube that, once it gets going, is incredibly loud. It generates around 110 decibels of noise – the same volume as a chainsaw. Once again, these images would take time to be processed, so, armed with some pills to control my seizures, I was sent home until the results were available. It was decided it would be best to stay with my sister for the time being. The seizures were definitely on my mind and although I didn’t remember much about the tonic clonic I had two days earlier, I still had the teeth marks in my tongue to remind me.
On the day of the results, a senior fellow, a clinical nurse specialist and a speech therapist walked into the consulting room and it was fairly obvious from the outset (given the clientele in the room plus another research fellow joining before we began) that something had been flagged up in the scans. After the nervous introductions, with my mum, Jo and Jo’s partner Gemma, it was the senior fellow who turned his PC screen in our direction to explain.
“I was sitting closest to the computer and although he was looking at me, he would simultaneously gauge the mood in the room and he knew when to pause, when to continue and when to stop as he delivered the news.”
‘The MRI scans have revealed a lesion on the left side of your brain.’ PAUSE. A lesion refers to an abnormality in brain tissue that can be relatively harmless but can also be life-threatening. Then came the assertion that this lesion is definitely a tumour and likely to be a cancerous one. STOP. A cancerous brain tumour is a malignant one. It’s high grade. It’s the one you don’t want to get. …. Even at this stage, irrespective of the shock and upset, I wasn’t interested in a second opinion. I was solely interested in what they thought was the best course of action. I was told the plan would be a ‘stealth guided Gliolan and ultrasound-guided sleep awake sleep left-sided craniotomy for tumour resection with intraoperative neuromonitoring.’ This operation is commonly known as an awake craniotomy, in layman’s terms it’s awake brain surgery and in my terms, it’s obviously shocking and I felt a bit panicked. STOP. The left side of the brain controls the motor and cognitive functions of your right side (explaining the right arm pins and needles and jerks during my two seizures) but the lesion is in the left parietal, which could cause key disorders in language and arithmetic if damaged or disturbed. Although the surgeons know in which ‘county’ these brain skills reside, they don’t know which ‘street’ they live on. The awake element was crucial – the surgeons didn’t want to damage any part of my brain that would have life-changing, long term effects so I would be required to talk and complete basic vocal and mental exercises as the surgeons worked a safe path to the tumour. We all wanted as much as the tumour gone as possible – but the lines between risk and reward are very fine. PAUSE. We were given some time on our own to contemplate being awake in an operating theatre having brain surgery but despite the risks (which included speech disturbance, a stroke, cerebral spinal fluid (CSF) leaks, palsy, risk to life), I went ahead and signed on the dotted line.
“The presence of the speech therapist soon came to light. She would be with me during the operation, testing my verbal and cognitive skills. I had no idea at that time how important she would be in creating calm in the stormiest of seas.”
My family and I were also supported by the clinical nurse specialist (CNS) team and a member of the oncology team. This amazing group of people deal with an ever-increasing number of patients across KCH and Guy’s Cancer Centre. They share the highs and the lows and together they are incredibly compassionate and sincere – I consider myself very lucky to be under their care. The research fellow wanted to know if I was interested in helping with two clinical trials to help with research into brain tumours. I said yes, but in the end, I didn’t qualify for either but future research is so important. Less than 20% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers.
A date for the operation was set; 28 September 2018. The CNS team had arranged all the pre-op assessments including a full body CT scan to check for other abnormalities, a visit to the cardiology unit and the one I was most intrigued by, a consultation with my speech therapist. It turned out that the latter would be a rehearsal for the tests we would do in surgery. These included using the correct verbs to describe pictures shown (e.g. a man is sitting on a chair, a lady is writing a letter, a girl is throwing a ball, etc.). I was shown four words, one of which didn’t rhyme with the others. I needed to finish multiple answer sentences, such as, ‘medicine is given to you by a…?’ or ‘in a jungle, you would find…?’. We also needed a bit of chit chat for when the tumour resection was taking place. They needed me to be awake, not dozing, so the therapist would quiz me on where I live, the best job I’ve ever worked on, the nicest place I’ve been on holiday, which football team I supported. Together we needed to engage. Arguably, the most important information was saved until last. It was an explanation of the alien environment I would wake up to in theatre. I would be sitting in a laid-back position (not horizontal) with my head clamped in place so it couldn’t move. This wouldn’t be painful but it would be uncomfortable and quite unpleasant. My face would be poking through a sheet so I couldn’t see anything in my peripheral vision – I imagined myself looking like a puffed-up bearded dragon. I would need to ignore what was going on around me; the noises, the beeps, the muttering and just concentrate on her. If I was cold, if my head hurt, if I wanted pain relief, tell my speech therapist. My imagination was running wild, yet her calming manner and wealth of experience put my mind at ease.
We were all set, or so we thought. My pre-op ECG flagged an irregular heart rhythm, called an ectopic beat. It never rains but it pours, I thought. The cardiology department and the anaesthetist were concerned. To that end, I was asked how I would feel about having my operation fully awake, to eliminate the risks of being put under general anaesthetic. Fully awake. From start to finish. Scalp removal, skull sawing, stitching it all back together – literally everything. The consultant explained there was a multi-discipline team (MDT) meeting first thing in the morning to decide how to proceed. This operation was essential so my answer, if required, was yes.
“It’s funny how these scenarios are far easier to deal with when it’s happening to you. For family and friends, it is, quite frankly, horrific.”
On the morning of 28 September, I was woken by the nurses at 6am for news of the operation. The anaesthetist told me it would be going ahead as initially planned; the fully awake option deemed unnecessary. That said, she did admit that on a different day and for a different operation, it definitely would be postponed for further cardiology tests. My family arrived whilst we were chatting and decided to wait outside. When they did enter and heard the good news, I think they, for a couple of seconds, celebrated a mini victory, at last. One, two… click. Back in the room.
In preparation for my surgery, I had to drink a fluorescent dye, known as 5-ALA, a relatively new medicine that can help identify brain tumours by causing them to glow pink under ultraviolet light. This has two main advantages. Firstly, the surgeon can remove more of the cancerous tissue, as it is easier for them to see. Secondly, as the surgeon can more easily distinguish the healthy tissue, they can leave this untouched, which should mean fewer side effects for patients. I took my magic potion and, half an hour later, the hospital porter arrived to take me down to surgery. It was almost time.
There weren’t any medical staff in the room, just my family, when I noticed my right hand was beginning to jerk like the start of a seizure. I called out to Jo that my arm was going and lifted it to show my hand shaking. She dashed out and got a nurse, a doctor, anyone in scrubs, but it was the anaesthetist who came in. By this point, I had started to lose my speech, as the seizure was beginning to take over. When asked what my name was, I couldn’t answer. All I could muster was a smirk and a slur. ‘Do you know where you are?’. Smirk. Slur. ‘When is your birthday?’. ‘Fffffffffith’ (correct)…’Ooocttttttober’ (correct)…2018. At least I got two out of three right!
“Then, the inevitable happened. My head rolled back and my parents and my sister watched me struggle on the bed having a tonic clonic seizure – I cannot begin to tell you how distressing this was for them. I imagine it happening to someone I love. It’s an awful thought.”
Unsurprisingly, I don’t really remember much about what happened during and post this seizure so this is my sister Jo’s version of events. My sister is absolute gold – we have a very special relationship, our whole family does. This tumour-based scenario isn’t anyone’s fault and yes, it’s pretty rubbish but I’m glad that it is happening to me and not any of them (and they each wish it was happening to them instead). Anyway, the anaesthetist suggested the best thing was to take me down to theatre, as they would be better equipped to deal with the situation there. By this time, I had stopped fitting but I wasn’t lucid in any way and was feeling quite agitated. Nobody knew if the op would go ahead – that decision was in the hands of the two consultant neurosurgeons who were tasked with removing my tumour. It takes about 15 years of study to become a brain surgeon and for all I knew, I could’ve been laying on the pre-op surgery bed that long – I have no memory whatsoever of being there but, thankfully, it only took half an hour for the decision makers to announce they would go ahead as planned.
The initial stages of the operation were performed under general anaesthetic; my hair was shaved, a reverse ‘C’ shape incision made in the scalp to reveal my bony skull, where a portion was cut out. I remember being woken up by my anaesthetist and she did the usual checks (name, date of birth, etc.) to judge whether I was in a position to proceed, before stepping away. I had a sore throat from the tube that had been in during the general anaesthetic stage, but otherwise I was comfortable enough. My speech therapist moved in and we swapped pleasantries. Despite being half naked in a room full of relative strangers, everything was fine! The neurosurgeons’ prep was complete and they were waiting to be given the ‘thumbs up’ to begin.
“Our goal to access the tumour would begin by finding safe ‘corridors’ in the brain to cut through, find the nucleus, shell it out and remove. Finding those corridors would be dictated by the answers I gave to the questions posed.”
Behind me, the surgeons had a small, two-prong device that could stun areas of my brain with an electric current. Answering questions correctly, whilst being stunned, meant the surgeons knew this corridor could be cut and removed. If the stun resulted in silence, answering questions incorrectly, or caused issues with parts of my right side (wired with electrodes), the area would be deemed inaccessible and marked accordingly. It was a ‘three strikes and you’re out’ rule for each stun / wrong answer. The surface of my brain had become a map which allowed the resection to begin. There wasn’t any extra noise, no pain and thanks to the speech therapist’s accurate and honest explanation, I knew what was happening and why. She kept chatting, occasionally letting me close my eyes but remained in my eye line or by my side throughout. She knew where the surgical line could be drawn. I was content physically and mentally but after an hour or so, the clamp to keep my head in place was becoming uncomfortable. The minimum time required for a successful awake craniotomy is one hour. The maximum time they can expect a person to stay awake in surgery is two hours. Needless to say, the longer you stay awake, the more they can resect. After more than 90 minutes in the spotlight, I was tired. I started to struggle with similes, most memorably ‘what is another word for beautiful?’. My mind was totally blank. Consistent errors were creeping in, so together they called a halt to proceedings, just shy of the two-hour slot. I was put into a state of heavy sedation for the remainder of the operation and recovery.
I’ve met some great people during this experience, one of whom is a brain tumour patient, originally from Spain, who has lived in London for more than five years and required an awake craniotomy like me. She speaks both Spanish and English fluently. As a result, she needed to do the vocal and mental exercises during the operation twice, once in Spanish and once in English – and I thought I had it bad! The craziest thing was that if the surgeons accidently affected the parts of her brain associated with her second language (English), her mother tongue (Spanish) would remain unaffected. However, if they affected her mother tongue, she would lose the ability to speak both Spanish and English. How mad is that?!
While I was in recovery and before my family had been notified the operation was over, they had made a decision to go downstairs to the hospital chapel for some peace and a moment to take stock. Out of the blue, with no knowledge they were there, my speech therapist appeared, rising up from the operating theatre like a phoenix from the ashes.
The fact she took time to find them was such a gracious and humbling act. My family, desperate for news, were so happy to hear everything had gone to plan. I was in recovery and, most importantly, doing well.
“Second to that, she said I had done very well with my answers during surgery and that I had managed to stay awake for two hours, including ‘the golden hour’ (where you perform at your best). Well done James, even if I do say so myself!”
A fluorescent positive area of the tumour was identified during my surgery and a sample taken for the biopsy and diagnosis. This would involve analysis of cells by a neuropathologist, looking for particular patterns that are characteristic of different grades of tumour. The neuropathologist report would need to be published and discussed at a MDT meeting before I would have any information and that, inevitably, takes time. An appointment was made for 11 October, 13 days after my operation. Post-surgery, I spent the first 24 hours in a dark environment because of the Gliolan effect. The bizarre thing about Gliolan is that after administration, exposure of eyes and skin to sunlight or bright indoor lighting, needs to be avoided, to prevent skin reactions similar to getting sunburn. This also meant that I had been wheeled down to surgery with a blanket over my head. Seriously! The people in Costa Coffee must’ve thought I’d snuffed it. Or maybe that I was a celebrity being wheeled down to surgery anonymously.
“I was on a heady mix of pain killers, steroids and anti-seizure medication. The swelling and trauma to my brain meant the potential of a seizure was very real.”
I was discharged four days after my operation and went back to stay with Jo and Gemma. The plaster would remain for another eight days before I had the stitches out. Somewhere in the middle of all of this it was my 38th birthday. We went for a brisk walk in the sunshine at Greenwich Park to celebrate. It was really nice to be out and about, breathing in some fresh air. I felt great (considering). We walked a fairly long way in the end. In hindsight, it was quite stupid. I had had awake brain surgery six days prior. Sipping my sparkling water later that day, I came over really faint and got the feeling I was about to have a seizure. There were no shakes or speech loss but it was definitely a sign that I had done too much, too soon and all the negative experiences came flooding back. Thankfully, I didn’t have a seizure but this was a real wake-up call and a serious moment of realisation for me.
“Like it or loathe it, life as I knew it had changed and I needed to make adjustments and decisions about things I never had to previously. This was the ‘new me’.”
A few days after the MDT meeting took place, we met another consultant from my favourite CNS team for official news of the operation, biopsy and to discuss the next steps.
We met at KCH, in the Cicely Saunders Institute, which is a quiet sanctuary away from the main building. We were already prepared (albeit with fingers crossed) to hear that I had a malignant tumour. That meant grade 3 or 4. Brain tumours are graded 1-4 according to their behaviour, the rate at which they are growing and how likely they are to spread. Together with my mum and Jo, we were given the news. The results confirmed a grade 3 anaplastic astrocytoma. But it is worth remembering that grade 3 tumours can spread to other parts of the brain and develop into grade 4, given time. For now, the next stage would be intensive, targeted radiotherapy, followed by a sustained dose of chemotherapy to keep what remained at bay.
So, that was my Christmas and New Year sorted as well as Easter, next summer, my birthday, my work schedule, everything.
“I am not ashamed to say it was a bit overwhelming but at least we had medical options and if you have options, you can make a plan and when you have plan, there is always hope.”
I began six weeks of radiotherapy at the start of November 2018. They needed time for brain swelling to reduce and I had a few other tasks to do before I would be ready to start. I would be having five treatments per week, with two rest days to ensure less damage is done to the normal cells around the tumour. Disrupting heathy cells can trigger side effects, which tend to be fatigue, sickness, skin reactions, issues with blood counts and the one most associated with any cancer treatment, hair loss. I lost all of the left side and back of my hair and chose to wear a baseball cap and nobody really noticed. For others, it’s a far bigger and more stressful issue and there are some really upsetting stories in some blogs I’ve read. Radiotherapy can also cause infertility, so I was offered sperm banking and took up the offer. I provided three samples, which will be kept frozen for ten years and beyond that, I gave consent to be an anonymous sperm donor.
My head would need to be kept very still during radiotherapy, so I was provided with a personalised mask, shaped to the contours of my face and fastened in place to reduce its mobility. To do that, I had a mould created. It was quite an odd experience. I lay on my back as a warm, soft plastic mesh was dropped onto my face and spread its way down the sides of my head. It was like a warm flannel but with slits.
We got to meet and know plenty of familiar faces during radiotherapy, both staff and patients. My sister drew up a list of friends and family to accompany me to the sessions, not that you need accompanying but people wanted to help and assist where they could – this was the perfect scenario.
“After a few sessions of introducing people to the reception staff, I was called out by the receptionist on introducing too many people as my ‘best friend’! Guilty! Nevertheless, this group (of best friends) became affectionately known as the radiothera-PALS.”
Following my six weeks of radiotherapy, I was back at Guys in mid-January for the next stage of my treatment; 12 cycles (a whole year) of Temozolomide. Broken down, it was one week of drug-taking, followed by three weeks of recovery and watching the most TV I’ve ever watched in my life (the TV my colleagues were busy making!). With my medication regime and ongoing risk of seizures, working was very much off the radar. As a freelancer, you’re either in or you’re out. There’s no softly, softly approach to get back in the swing. I was definitely out. Because of this, my work friends and colleagues, old bosses and trainees got wind of my inability to work and they generously set up a fundraising page. I would never expect this, ever. The level of generosity was insane and I am still in shock. I am grateful to everyone who donated some of their hard-earned cash. It took away a lot of my financial worries and pressure and it was an incredibly overwhelming act from all concerned.
I finished chemotherapy on 22 December 2019 and I have recently started writing a retrospective blog, documenting my brain tumour journey so far. I intend it to be helpful to others, who may be going through a similar experience. I enjoy doing it and actually find it quite cathartic, piecing it all together with the help of my detailed medical notes. I have also got back into running, having previously ran the London Marathon in 2013 and the Paris Marathon in 2017. I have actually signed up to do the London Marathon again this year, with the support of medical team and my nearest and dearest. I am running it for charity and am not expecting to break any records but training is going well and I am now up to 14.5 miles.
“I have another MRI scan approaching, which will be followed by an appointment with my neurologist the following week. I am feeling positive, that is the best way to approach things. I am, however, realistic.”
I know the statistics. Through my own experiences, I have learnt a lot about the lack of funding into brain tumours. It is a cancer of unmet need. It is so shocking that treatment hasn’t changed in a generation. So much more research is required in order to get closer to finding a cure. My dad had a low-grade acoustic neuroma, which was eventually diagnosed after he kept falling out of bed and bumping into things. He was on a ‘watch and wait’ for six years or so but then, when they found it had grown and was in danger of causing a stroke, he had the tumour removed. The surgery left him with severe right-side facial palsy. It is a reminder that even for those living with a low-grade brain tumour, the effects can be life-changing.
My life has changed beyond recognition. Gone are the days of frequent, exciting, overseas work trips and nights out on the town. I have to prioritise looking after my health now and be more cautious. It is my 40th birthday next year and although I wouldn’t usually be one for a big celebration, as I don’t like being the centre of attention, I will definitely do something to mark the occasion because life is worth celebrating.
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