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The Brain Tumour

02 July 2023

I had Brain Surgery, twice

There is an old saying that “What doesn’t kill you makes you stronger”, well I don’t feel stronger. I feel like I have been through a war, I am still here, and I am still fighting. This starts with me being a stubborn asshole, and not listening to my wife.

I was coming home from work one day, listening to a podcast. On that specific day, the voice just didn’t sound right. I removed one ear phone and the sound through my left ear was perfect, removed the other and the sound coming through my right ear phone sounded distorted. It was like a dalek was talking.

I stopped at a nearby bench and went through all the settings on my phone and air pods, everything looked spot on. Yet the sound through that ear was distorted.

I did what any stubborn stupid bloke would do, I ignored it. I told the wife after a few days, who even joked at the time that it was probably a brain tumour or something wrong with my brain.

After a few weeks, and after my wife nagging me, I got booked a hearing test with Boots, and I did something equally stupid. I cheated.

I cheated on my hearing test

So there I was in a small cheaply made sound proof booth, tucked away in a forgotten converted broom cupboard in boots. I could see the person who was running the test press the buttons to play the sounds I was supposed to hear. So I cheated. When she pressed the button. I did as well. I came away with a very good hearing test result. To this day I don’t know why I did that, part of me just didn’t want to believe anything was wrong.

All this was in the run up to lock down, my hearing had deteriorated, and I noticed my balance wasn’t quite right. I’d loose it occasionally and have to steady myself. My wife had nagged and nagged me to get it looked at and after several attempts to see a doctor during those first covid months I finally got to see a doctor over the other side of town.

The surgery was deserted, which was the first time I had been to a doctors surgery and not had to wait, I was waved straight in after a bunch of covid questions and temperature checks.

He didn’t find anything and I was referred to something called ENT. I had no idea what that meant at the time, there is a surgical speciality called Ear Nose and Throat, this meant seeing a specialist at the Queen Elizabeth Hopital. Here I am 3 years later, and with good medical vocabulary now!.

I waited over a year for the appointment to come through, 54 weeks. I am still quite angry about this, if I had seen the consultant earlier, surgery might not have been necessary. But that the time, I didn’t think much about it, the symptoms were mild.

My inital appointment was a telephone consultation in August 2021. After describing my symptoms, the consultant I was told it could be a tumour in rare cases, and the next step was to have an MRI scan. I was to meet the consultant after the scan to talk about the results.

On the 14th September 2021, I had my first MRI scan, and on the 28th September 2021, I met the consultant to discuss.

I know something was wrong, the MRI was one of those mobile scanners and at the start of the procedure, they were quite dismissive of me. They didn’t laugh at my jokes, and I honestly felt like I was wasting their time. I told them I had never had a scan before, and I had a tons of questions.

After the scan was finished, their tone changed completely, they said the result would be discussed with the consultant, they wouldn’t say if they saw anything. Even my joke about “do I have a brain then?” fell flat. It was like I had weeks to live and they couldn’t tell me. Just be nice and get him out of there.

You have a Brain Tumour

On the 28th September 2021, 2 days after my 48th Birthday, I was told I had a brain tumour. It was 2.4 cms in size.

It’s difficult to describe how I felt getting told this, Shocked, Numb, Scared, Angry, Sad, all of these. To be honest I can’t really remember the consultation. I do remember the consultant saying it needed to be referred to MDT (Multi Disciplinary Team) to look next steps. I also remember the name of what I had. A Vestibular Schwannoma or Acoustic Neuroma. I don’t remember much else about that meeting. I do remember crying, and I am so glad my wife was with me. No-one should be told news like this alone.

5th November 2021 - We got Married

It’s not every day, that you’re told to make sure your affairs are in order, that there is a small chance that this thing will kill you, that the operation also carries a great many risks. It’s close to a major artiery. Age, weight are all factors. In the following weeks I googled the shit of Acoustic Neuroma and my wife and I discovered a charity called BANA. The British Acoustic Neuroma Association. BANA soon became a much needed resource for support.

Sara and I have been together since 2004, but we’d never got married. The thought of someone else deciding my fate should the worse happen, scared me. We decided to get married, not very romantic I know. We did go to a big fireworks display after, and it’s nice to know that we’ll get that every wedding anniversary.

15th December 2021

I didn’t have any further contact with the hospital from the September appointment to the 15th December one, after it was referred there was a MDT meeting and my case along with many others were discussed. I wanted surgery, I wanted it gone. But the tumour was right on the border of Radiothearapy and Surgery. It was also classed at a priorty 3, in other words not urgent. A priorty 1, would mean surgery in the next few weeks. Sara and I left this meeting, feeling like we had plenty of answers and the feeling that they wouldn’t do much about it.

April 2022

We had another meeting in April, this time it was basically to tell us, yes we agree you need the surgery, but as it’s a priorty 3 we can’t see that happening for a while. As I only had 1 MRI scan at this point, they wanted another one to see if it had grown.

May 2022

Another MRI

June 2022

Another follow up appointment in June 2022. This time, the tumour had grown from 2.4cm to 3.2cm, which esculated me to a priorty 1 or 2. The Acoustic Neuroma is a slow growing tumour, so it was a bit of a shock to see it had grown so much in 8 months.

July 2023 - Pre-Op

On the 20th July I was called in for a Pre-Op. The procedure to remove an Acoustic Neuroma is a long, complex and dangerous procedure. There are 2 teams working, for 12-15 hours, and your kept under in the same position throughout the whole procedure. Your head is clamped in a side position. First the ENT team, they cut through the skull, then the Neurosurgery team take over, removing the tumour through the hole the ENT team drilled in the skull. Once removed, a fat graft is used to fill the hole in the skull. The procedure is called a Translabyrinthine Craniotomy.

The hole is down through the ear, as a result of this procedure you are left with permanent hearing loss, the bone that provides you with hearing has to be removed. Another side effect is also the removal on your balance organ. The vestibular system. This system includes three fluid-filled loops (semi-circular canals) which respond to the rotation of the head. Near the semicircular canals are the utricle and saccule, which detect gravity and back-and-forth motion.

Removing these organs means permanent balance issues.

I had the procedure explained to me in excruciating detail, as well as the risks. There was a small chance I would not wake up from the procedure. Having someone under a general anaesthetic for so long has so many risks.

July letters.

In late June, once I found out the tumour had grown it panicked me. My balance and hearing were getting worse, I still had not heard from the hospital, even though I was told my case was now a higher priority. I wrote some letters, basically begging to get me in for the operation as soon as possible. I wrote to PALS, my Local MP, the MP’s for the area the hospital was in. To their credit PALS wrote back fairly quickly. The MP in my neighbouring constituency, the conservative MP Gary Sambrook wrote back straight away and even forwarded my details to the head of the NHS trust in Birmingham. He could not have been nicer. I did eventually hear back from my local MP, Labour’s Steve McCabe. It took him 2 months to write back, and it wasn’t even him it was one of his minions. Honestly that guy is absolutely useless. The letter said, you probably had the surgery now, thanks for writing.

I don’t know if it was Gary Sambrook’s intervention or not, but I got a call from the hospital on the 28th July. I was booked in for the 4th August 2022. I cried.

The Surgery 4th August 2022

Sara left me 7am at the hospital, posting this on Facebook.

I was second in through the door, on what looked like a busy day for surgery. They took all my details, I had to “explain in your own words” the procedure at least 4 times to different people. I was given a gown and some sexy compression socks. On the way down to the Anaesthetic room and surgery, my surgeon Mr Peter Monksfield, asked for all my details again. He also asked if I was willing to have part of my inner ear and tumour sent away for a study. I made a joke that he “Basically wanted to harvest my organs”. I was met with a dead pan stare. That joke went down like a lead balloon. Call it nerves, but I was trying to make light of the situation. I was wheeled into the anaesthetic room, talked a little cricket with the anaesthetic dude. I did see into the other room, where I can presume the main theatre was. There were loads of people in there. In a strange way this reassured me. I am so grateful that all these people came together for something that saved my life. For the next 12-15 hours I was entirely in their hands. I don’t remember much of anything after that.

I can still remember waking up, vividly. It was like I was suddenly snapped into existence. Everything was black and I could hear them calling my name in the distance. I felt like I was raising out of a body of black water, and as I broke the surface the voices I heard calling me suddenly became vivid and clear.

I couldn’t see, my eyes had some sort of goo in them, everything was blury. My mouth was incredibly dry, I was so thirsty. I was given small sips of water and asked questions, to make sure I was still me. I was so happy to be alive and so happy that I had come through it. They put me on the phone to Sara pretty quickly, from my perspective I can’t remember what I said, but I was “with it”, Sara told me after that I sounded as high as a kite and completely away with the fairies.

I was in ICU for just short of 2 days, and then a normal ward for 4 days.

When I came out, I was sent home with a large selection of drugs. Some very strong painkillers and Morphine if I needed it. Laxatives, straining is dangerous with a head injury like this. Also a twice daily injection into my stomach to prevent blood clots. Eye drops, pads. The NHS is brillant, to think I have of the resources I have used during my stays in hospital and all the drugs I have been given. Yes, I have paid my taxes, but I have never had to worry about the cost of any of this. I am so grateful for the NHS. During my inital googling I did see patients in the US having to pay hundreds of thousands for this procedure. I can’t imagine the stress of having to worry about that.

Stitches out 19th August 2022

The stitches where taken out around 2 weeks later, it was healing nicely. I spent the first few weeks after coming out of hospital, laying around eating and sleeping, and watching tv. I had my brother come and stay with me for a week just after I got out and that was great. It was like the summer holidays when I was a kid, just my brother and I in the house mucking about. I was still very weak, I could not walk very far, I was dizzy alot and my balance was terrible. I would sleep for 14+ hours a day

I started improve, and I went back to work part time after about 7-8 week, first doing a 2-3 days a weeks and slowly building it up. One you thing you have to understand about me is that I live to work. I love computers and I love coding. I started from an early age, never not working on something. I have always had a side project, I have always been learning something new. This was the first time I had taken any time off, and I really struggled. I have never been out of work. The worst thing you can do to me is make me bored. In hindsight I went back to work to early, I should have given myself more time to recover.

In the middle of September, I had a trip into A&E, I thought I had developed a blood clot, I had a pain in my leg, and the scar from my drain in the stomach was very sore. I got to the hospital and went through a bunch of tests and a scan on my leg. All absolutely fine, I did feel like a bit of a dick. I put it down to trying to do too much, too quickly. I had started to take the dog for a walk, and started to move around more. Pretty stupid really, they told me it would take 12-18 months to recover from this, and here I was started to push things 6 weeks after brain surgery. Stupid.

The Leak

Around October I caught a really nasty cold, even having it diagnosed as mild pneumonia by the doctor. I had been back at work for a week or so, and was tired alot, I developed a nasty cough and generally felt shite. I normally get over colds quickly but this one was horrible. The coughing had probably caused a tear, I started leaking fluid from my right nostril. If I bent my head forward, it would literally pour out. The funny thing about it, is that it came and went, it was pouring out one minute and then I’d go for 2-3 days without any incidents. I’d sometimes wake up and it would be all over the pillow. I had been warned about this, and given a sample pot and I managed to get a small sample of it. My wife had dropped it into the hospital to be analysed, And at the next appointment I had with the surgeon; ‘yep you have a leak’.

It’s called a Cerebrospinal fluid leak. Fluid from around my brain is leaking into my sinuses. I needed another general anaesthetic operation to repair the damage. The surgeon was keen to get this booked in pretty soon.

15th October 2022

Just before this appointment I actually met up with the surgeon at a BANA conference, I was asked to speak about my experiences and at the time I was leaking all over the place. I reminded him of the lead balloon, organ harvesting joke. This time I did get a laugh.

Plugging the Leak - 2nd Dec 2022

Back in Hospital again. This time was totally different, the procedure was small in comparision to the operation in August, I only had to be under the anaesthetic for a few hours. This time, was also much more painful.

I felt fantastic after the operation, I came around and I didn’t have a catheter fitted this time, I needed the loo, and was up and walking around 2 hours after I came round.

I stayed in hospital a few days, I still had a drain in my stomach where they had taken fat from my stomach to pack into my head, that took a few days to come out.

You meet some colourful characters in hospital, I shared a room with 2 homeless drunks. One had been in hospital because someone tried to hack his hand off with a machete. Another was possibly the most racist person I have ever met in my life. It’s a good job I am completely deaf in one ear, I am able to put my good ear in a pillow not hear a word. Hospital is a pretty noisy place, but being on a ward with these people was a whole new level.

In the months that followed I could still feel a slight leak, but it was nothing like it was before. I was back to work full time after Christmas, to soon i think.

Another Hospital Visit - April 2023

I work from home, sitting at my desk in my little home office all day, It was a wednesday and just wasn’t with it that day. I had woken up with a headache, and taken 2 paracetamol, which normally does the trick. But this day it didn’t. I took something stronger around lunch time, and again it didn’t work. Around 4:30 I messaged my boss, that I was going to log off early. At which I went straight to bed.

When my wife came to bed around 10pm, I was freezing cold, but my temperature was 39.6 degrees. I honestly don’t remember much of that evening. I was taken by ambulance to the Queen Elizabeth Hospital, and they immediately put me on a drip and gave me antibiotics. Specific antibiotics for meningitis.

I was there for 10 days in total. I have 2 new pain experiences I hope never to repeat. The first is the headache meningitis gives you. The 2nd was a failed lumbar puncture procedure.

Things I have learnt about myself.

I am very strong emotionally.
Life is short, don’t waste it.
I have an amazing family, especially my wife Sara, my daughter and my brother and sister in law have been amazing. The support from friends and family has been truely humbling.
Work is not that important, not really. I battled to get back to work, they had been so supportive during all this. I had a phased returned but I do think I went back way to early. I felt something was off with them after the April 2023 trip to hospital, in the weeks that followed I was moved teams which was sold to me as “helping out another team that needed some leadership and guideance”, only to have the team disbanded in the first few weeks I do there. I was let go as a result. I’m not bitter about it, but I’d placed so much importance on work, and in the end that loyalty was not returned.

Another great outcome is the influence this has had on my daughter. She is now going into studying medicine.

June 2023

An appointment with the Neuro & ENT Surgeons, there has been no significant change in the tumour between the scans and I’m am scheduled to have another scan in 6 months. If there is anymore growth, as it’s now away from the brain stem, it’s treatable with a zap of radiotherapy. One interesting fact I found out at the visit: Since the operation, I cry when I eat. More specifically my eyes and nose stream when I am eating. It turns out the nerves that control saliva are close to the ones that control tears and as they are messed about with during the operation, it’s not uncommon for them to get confused, and send the wrong signals. Fascinating.