Brain Fog Blog

The date is Thursday 6th June 2024. It’s around 12pm. I’m currently waiting in a bed in the Brain Tumour Ward at the UCLH National Hospital for Neurology and Neurosurgery.

Any minute now I’m expecting a nurse to come along and let me know it’s time to go down to floor below where they’ll inject me with anaesthetic, cut open my skull and slice apart pieces of my brain in an effort to remove parts of what they suspect is a tumour.

To say I feel physically sick would be being modest. ‘Bricking it’ would also be putting it lightly.

The one thing I am, is ready to get this over with.

The thing about preparing to undergo brain surgery, is that there is no real way to prepare to have brain surgery.

I don’t believe I have any ground breaking advice or tips that you can’t find on the internet. All I can speak for, is my own experience.

When I decided that I was going to do the procedure I began trying to compartmentalise parts of my life – something I’m still doing today, for better or worse.

At the time of agreeing to do the surgery it was the beginning of May, around two to three weeks after my Dad passed away.

I remember mapping out the coming month or so in my head to try and make sense of it all.

First it would be my Dad’s funeral.

Two days later I was due to run in the Hackney Half Marathon – the timing couldn’t have been better!

I would then have my pre-op that week.

At the end of which Lauren and I were booked to go to Iceland for a week and a half.

Then 10 days later I would have the surgery. Oh and it was also my birthday in that time, not that that was too important but was going to happen all the same.

So deciding to face one thing at a time made the most sense to me. I also don’t think I had the mental capacity to juggle all of this in my head.

The mixture of anger, grief, anxiety and being scared all merged into one numb emotion that sustained.

The surgery was booked in for June 6th and nothing was going to change that (or so I thought).

So I just got on with life. We celebrated my Dad and gave him as good a send-off as you can. I somehow dragged my way through a half marathon, without having trained, in under 2 hours and 20 minutes.

And having been told quite literally there’s nothing I can do in advance of surgery, we went on holiday to Iceland.

Looking back this was a very good decision. If you’re about to do any major operation or treatment I think it’s better to get away, if you can, than to sit around mulling in your thoughts.

That being said I was anxious as hell in Iceland about the looming brain op. But what better way to deal with anxiety than by going and looking at glaciers and icebergs?

In Iceland everything was fairly normal. Knowing the date was locked in and how time would unravel ahead of the surgery gave me some assurance.

This rug was completely swept from underneath my feet however when I got a call from the hospital exactly one week before D-Day.

I was getting ready for bed when the admissions team called me to tell me fairly upfront and unapologetically that they could no longer fit me in on June 6th as there was now going to be a junior doctor strike.

This wasn’t going to be a small one or two day delay either, I was told that they might not be able to do the surgery for another month and a half.

And that was that.

After everything that had happened to get to this point I thought the NHS shitshow was behind me.

If I had any hope in the health service left, it was basically gone now.

To be clear, I support industrial action. But when it affects you so, I think this makes your feelings less straightforward.

It’s hard to express how this felt. I think I was just angry and confused.

Angry that yet again I felt like I’d been let down.

Confused that I was told I needed to have an urgent operation on my brain but then also told that it’s not that urgent so I can wait a few months longer.

The only part of this that offered some solace from the worry was that the team of doctors and surgeons agreed that whatever was wrong with me wasn’t so serious that I would need to operate imminently.

Although in fairness all I wanted to do was get it over with.

So all I could do now was accept the operation would be when it would be. As inconvenient as that was.

Life carried on. Lauren and I continued to have an amazing time in Iceland. We came back on June 3rd and I let my work know the change of plans.

On June 5th I was on underway with my normal commute to work in the morning. I’d just got into Euston Station when I got a call from the hospital.

I’m paraphrasing slightly but this is the essence of the call:

“Hi Mr Fowler, this is the Brain Tumour Ward at UCLH. We’re just calling to inform you that your bed is ready for you, and that you can come in anytime from 11am.”

Flashforward a few minutes and several back and forth calls, what I came to learn was that the team had managed to fit me in for my surgery on the 6th. They’d also decided that I would come in one day before to be admitted to the ward to stay under observations. The surgeon had decided that my operation would be around mid-afternoon.

The only person they’d failed to inform of all this… was me.

Thinking about it now it’s quite funny. I was about to go into the office but then had to U-turn to grab my things from home and immediately go to the hospital.

Thankfully my work understood this and it was no problem.

The rest of the day was quite boring truth be told. There’s nothing worse than being in the hospital but when you are perfectly well and have to come in just to wait around for 24 hours then it’s much more excruciating.

During the night I struggled to sleep. The anticipation of it was weighing heavy. I also felt sick being in the hospital having spent more than enough time there with my Dad recently.

The next morning rolled around though and at the orders of the nurse I showered at 6am and was ready for surgery.

When the visiting hours started at 12:30 I was so happy to see Lauren and my Mum. This was cut short after ten minutes when I was told they’re ready for me to go down. They had got the operation time wrong and it was now going to be a few hours earlier.

All three of us, and the nurse, walked down stairs to theatre. Trying to put on my bravest face (and not cry) I quickly said goodbye.

In the pre-surgery room it’s a whole different vibe. I imagined they might try to lift my spirits given the intensity of the situation, but the anaesthetists were basically part time comedians.

We cracked a few jokes. I’m pretty sure I said something along the lines of “well its hardly brain surgery is it?”. Then a few minutes later they gave me the sauce and I was knocked out.

I don’t know what happened next fully but I do know I was out for about five hours. The surgery took around four.

I’ve had a general anaesthetic before so I had an idea of what to expect when waking up.

When I came around in the recovery room I was in and out of consciousness. My Mum and Lauren were both there.

The first thing I remember was the pain in my head. It was unlike anything I’d ever felt, or can even describe.

Quite literally it felt as if someone had put their hands inside my head and squeezed my brain as if one was crushing the inside of an orange with their thumbs.

Something I knew already but interestingly the brain has no pain receptors, so you cannot actually feel pain in your brain.

That said, I genuinely could feel my brain throbbing. Or something similar.

The next few weeks would be marked by this during my recovery. As with everything in my journey up until this point, it was not going to be straight forward or really go to plan.

I’d end up in spending most of the next three weeks in and out of different hospitals. I’d get to go in an ambulance and be rushed to A&E for the first time (not a flex!) And I’d spend most of the time wearing an eye mask to avoid any light, doped up on pain killers as much as possible.

But that’s a story for the next one.