~ astrocytomajames ~

The small(er) reveal…

#4b

Picking up from the last blog, a reminder that we were in the consulting room with other people besides my family and senior fellow J~. I haven’t asked any of the medical team (at time of writing) if they’re happy to be named in this blog which is why I’ve used J~ instead of his real name John. Dammit…sorry John.

This is J~ in biscuit form!
September 2018

The presence of the speech therapist soon came to light. Hy~ (as she will be known) would be with me during the operation, testing my verbal and brain skills. I had no idea at that time how important she would be in creating calm in the stormiest of seas.

The CNS (clinical nurse specialist) team were represented by C~, another female and member of the oncology (cancer) team that have supported me and my family throughout. This amazing group deal with an ever-increasing number of patients across Guys and KCL. They share the highs, they share the lows and together they are incredibly compassionate and sincere – I consider myself very lucky to be under their care.

The research fellow (a second J~ so this could get confusing) wanted to know if I was interested in helping with 2x clinical trials to help with brain tumour research. I said yes, but in the end, I didn’t qualify for either but future research is so important. Around 20% of people diagnosed with a brain tumour survive beyond 5 years compared with an average of 50% for all other cancers. Brain tumour survival remains low and has changed little in over a generation – it is considered a cancer of unmet need (ref: CRUK website).

A date for the operation had been set; Friday 28^th September 2018. The CNS team had (of course) arranged all the pre-op assessments including a body CT scan to check for other abnormalities (none reported), a visit to the cardiology unit and the one I was most intrigued by, a consultation with Hy~.

It was a rehearsal of the tests we would do in surgery. These included using the correct verbs to describe pictures shown (eg. a man is sitting on a chair, a lady is writing a letter, a girl is throwing a ball, etc). I was shown 4x words, one of which didn’t rhyme with the others. I needed to finish multiple answer sentences like ‘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 dissection (medically known as a resection) was taking place. They needed me to be awake, not dozing, so Hy~ 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 to last. It was an explanation of the alien environment I would wake up to in theatre. I would be sat 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 as a puffed up bearded dragon. Hy~ told me I needed to ignore what was going on around me, the noises, the beeps, the muttering and just concentrate on her. If I was cold, tell Hy~. If my head hurt and I wanted pain relief, tell Hy~. If I felt panicked, tell Hy~. My imagination was running wild yet her calming manner and obvious experience did put my mind at ease.

We were all set, or so we thought. My pre-op ECG flagged an irregular heart rhythm (an ectopic beat). It never rains but it pours…

The good news was although it was irregular, it was regular in it’s rhythm if that makes any sense? On every (I’m pulling a random number here) 10^th beat, I had a double beat which concerned the cardiology department and the anaesatist responsible for my safety during the operation. To that end, J~ came to see me on the ward and asked: “would you be open to having your operation fully awake? This way we could eliminate the risks of putting you under general anaesthetic given the results of the ECG”.

Fully awake! From start to finish. Scalp removal, skull sawing, stitching it all back together – literally everything.

He 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’s quite frankly horrific.

FYI:

Where do I live? Catford, SE6.

Best job I’ve worked on? Olympics opening ceremony, London 2012.

Nicest place I’ve been on holiday? Cape Town, South Africa.

Which football team do I support? Chelsea.

The BIG reveal…

#4a

A senior fellow, a clinical nurse specialist and a speech therapist walk into a consulting room, which I know sounds like the start of a joke but it isn’t – sorry. It was the room I was called into to discuss my scan results back at KCL.

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 Gemma, it was J~ (the senior fellow) who turned his PC screen in our direction to explain. I was sat closest to the computer and although he was looking at me, he could simultaneously gauge the mood in the room and knew when to continue…when to pause…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. They are usually identified by unusual dark or light patches on MRI scans and as you can see in the picture above, there is an unusually dark area with a light nucleus. With his experience and knowledge of the brain, J~ suggested 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. The word you don’t want to hear. The dark area is the tumour and the white area shows abnormal cells that are multiplying in an uncontrollable way and rather than maintaining a healthy brain, they are damaging it. The rate at which these cells grow (and how likely they are to grow back after treatment) dictates the grade of the tumour.

~ pause

J~ explained that a standard biopsy was impossible as, contrary to popular opinion, the brain isn’t accessible through the earhole like a hanky (FYI he didn’t really say that bit). He started to explain the possible options but we didn’t get far. Top of his list was brain surgery. Even at this stage, irrespective of the shock and upset, I wasn’t interested in a second opinion, I didn’t question the accuracy of the scan, I was solely interested in what they thought was the best course of action. That was:

“a stealth guided Gliolan and ultrasound-guided sleep awake sleep left sided craniotomy for tumour resection with intraoperative neuro monitoring”

This operation is commonly known as an awake craniotomy, in layman’s terms it’s awake brain surgery and in my terms, it’s called ‘f***ing sh**’ – fishing shot, obviously.

~ 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 2x 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 which borough 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 tumour gone as possible – but the lines between risk and reward are very fine.

~ pause

We were given some time alone to consider the decision, time to contemplate being awake in an operating theatre having brain surgery but despite the fears, we all agreed there was no other option.

I acknowledged the possible risks including speech disturbance, a stroke, CSF (cerebral spinal fluid) leaks, palsy, risk to life amongst others before signing on the bottom line. Removing as much tumour as possible was essential and that would need an awake crainiotomy…

Anyway, as I saying earlier…

A senior fellow, a clinical nurse specialist and a speech therapist walk into a consulting room. A nervous patient storms in and says “just give it to me straight, how long have I got?”

“10…” they responded.

“10 – years?!”

Looking at his watch, the fellow replied “…9…8…7…6…”

The scans begin…

I worked on the early series of reality TV show “24h in A+E” (when it was based at Kings -I love that show) so I was quite familiar with the majors waiting room – I was looking for someone with a clipboard and a headset to come and mic me up…

With my mum and sister in tow, I was put on on a drip of Pabrinex which contains all sorts of goodness after my alcohol intake had raised quite a few eyebrows. Could it be as simple as that?

I had an X-ray of my head and neck. After that I had a CT scan (computed tomography) of my head which they only do if you present symptoms. I belie anyone in that situation not get all ‘Jessica Fletcher’ (an 80s TV detective) and assess the radiographer’s body language and second guess what they’re seeing and what they know about your scan. Fruitless, yet inevitable.

I stayed in hospital for overnight observation. There wasn’t much info from the nurses and doctors as scan results were not available. A computer processes the information, which will then be analysed by a radiologist which explains why a radiographer is so neutral in expression.

At this point, it’s very easy to convince yourself something is drastically wrong and that’s why they’re doing so many tests. Possibly. Or maybe it’s because they can’t find anything untoward? The mind is a powerful tool. I didn’t fall into any either category, I just did what I was told and I was told it was time to get on the wheelchair for an MRI scan. Yes, matron.

An MRI (magnetic resonance imaging) is a scan that uses strong magnetic fields and radio waves to produce super detailed images of inside of the body (much better than a CT). The scanner is a long claustrophobic tube that once it get’s going, is sooooo loud. It generates about 110 decibels of noise which is the same volume as a chainsaw!

Again, these images take time to be processed so armed with some pills for seizure control I was sent home until the results were available. The seizures were definitely on my mind and although I don’t remember much about the tonic clonic I had 2x days earlier, I still had the teeth marks in my tongue to remind me.

As a family, we decided it would be better if I stayed with my sister for the time being so goodbye Kings (for now). I didn’t even get my microphone…

Levels of radiation:

Dental X-Ray – 5 microSieverts

Body X-Ray – 100 microSieverts

CT scan – 1000 microSieverts

Chernobyl (10mins exposure) post meltdown – 50,000,000 microSieverts

Between scans at KCL with Jo.
September 2018

The perfect consultant for someone
who drinks too many units!
September 2018

Seizures?!

A seizure can be classified as ‘a sudden burst of electrical activity causing a temporary disruption to how the brain works’. Triggers differ from person to person but most common are tiredness and lack of sleep, stress and alcohol. In my first job interview to work as a sound engineer in 2005, I was asked “do you like beer and curry?” which probably gives you a good idea of the kind of lifestyle I led for the past 14 years.

So when I woke up at 3am (tired after a long day at work followed by a few drinks) I didn’t really think anything of the severe pins and needles in my right arm and feeling quite disorientated. Nothing a trip to the loo couldn’t fix but I called my GP in the morning, who listened and told me to call back if it happens again (Edith Cavell GP practice, Streatham Hill – very highly recommend).

5 nights later, it did happen again. But this time the pins and needles in the right arm were more extreme, creeping up my forearm as my fingers were uncontrollably jerking (imagine a poker player flipping chips – without the chips). Unfortunately this time, hovering over the toilet, I passed out…

I came round with a headache, the sorest tongue (from biting down on it) and laid amongst the toilet rolls I fell into (which were a blessing in disguise when I realised I pee’d on the floor).

I‘ve since learned since that I suffered a generalised seizure which is where the burst of electrical activity affects both sides (hemispheres) of your brain. My body stiffened, my head rolled back and I was out for the count (probably for 2-3mins). I don’t remember the feelings I had – it was something I had never experienced before and it happened so quickly. This was my first tonic clonic seizure – laid, unconscious and unaware, on the bathroom floor.

Given these extreme circumstances, staggering back to bed and going back to sleep probably wasn’t my best move but…(shrugs shoulders).

In the morning I called 111. They told me to go straight to A+E at Kings College London. I called my family, jumped on the bus and made my way to Denmark Hill, blissfully unaware that my life was about to change forever.

I hadn’t been to the doctors for 10/11 years (literally), not in a blokey ‘I don’t need to see a Dr’ way, I just wasn’t ill – ever! Unless you include hangovers of course…

Focal aware seizures

In focal aware seizures the person is conscious (aware and alert), will usually know that something is happening and will remember the seizure afterwards.

Tonic clonic seizures

These are the seizures that most people think of as epilepsy. At the start of the seizure the person becomes unconscious, their body goes stiff and if they are standing up they usually fall backwards.

Blood on the loo rolls and a chewed up tongue.
September 2018

Hello, my name is James…

Welcome to my first ever blog – thanks for coming.

My name is James, I am a 39 year old who grew up and lives in south east London. I’m lucky to be surrounded by family and old school friends, although going to university in Leicester before working here, there and everywhere as a TV sound engineer, I’m lucky to have mates up and down the country which I love. Variety is the spice of life.

I don’t have kids or a significant other. I (unfairly) blame my job for that, it’s nothing to do with blundering chat lines, honest. A more likely reason is the fact I haven’t been out and about much lately. In September 2018 I was diagnosed with a brain tumour and operations, radiotherapy and chemotherapy have the ability to taint a good night on the town.

As it stands in November 2019, I’m approaching the end of my planned 12x cycles of chemotherapy (that’s what they call them in the trade, cycles). In December, I will have a final MRI scan for 2019 which will give us a new baseline for the tumour and an idea of how to proceed in 2020.

I feel the need to insert a deep and meaningful slogan to sign off this first blog but I’m more action than words. I hope you find this blog informative and entertaining and to anyone reading with the same or a similar diagnosis, I hope this simple story will inspire in itself.