Christmas was a much needed respite for me. Giving me a chance to process, plan and spend time with those that matter. I had managed to fly home on Christmas eve, with an early morning flight enabling me to spend breakfast in Belfast with my sister’s family including my two nieces, before I headed down the road to my hometown and place of birth, Omagh, courtesy of a lift from Dad.

I spent the days enjoying the simple pleasure of time spent with family & friends. Mum noted that my appetite which was usually described as mediocre at best (C-), had improved substantially (A-) as I tried my hardest not eat everything in sight. I had a sneaking suspicion this was a side effect of the dexamethasone of which my dosage was still substantial. I wasn’t complaining as I wolfed down seconds and thirds of most meals, it was like someone had turned the flavour dial up to 11 without me noticing!

Speaking of side effects, The dexa, being a steroid was certainly disturbing my sleep. Meaning that if I was lucky, I would manage a spell between 10-2:30am before waking. Usually after that I was wide awake, alert and feeling strangely productive during the ‘wee’ hours. I found myself going down many a youtube rabbit hole until 6am. By this stage my body would be ready for another hour or two of shut eye if it could get it. I have always been a traditionally solid sleeper so it was new experience to struggle in this way, I could only hope that as soon as I tapered my dose of the dexa to zero then this would work itself out.

Apparently another side effect of the medication I was on called Keppra (Levetiracetam) has the potential to make those that take it much more easily irritated, thus causing what has been called “Keppra rage.” which apparently is a thing?! To my relief, I was not prone to Keppra rage, (a least, not that I was aware off!) Any personality changes I did experience I could put down to having a new perspective on my problems, I had gained a new mental clarity which ultimately came from giving fewer unnecessary fucks about the things that didn’t matter. It was a very freeing sensation and was a positive side effect of having a brain tumor that I could recommend to anyone!

This gave me an idea for an excellent if slightly controversial form of therapy that someone could be signed up for. Imagine if you could sign that one person who’s always complaining about something for a very special experience like no-other! You know the type, nothing’s ever good enough for them, the one who’s always a finding fault or bitching about how a minor inconvenience has completely ruined their day.

If you dont you know anyone like this, it’s possible that either one of two things may be happening.

1) Congratulations, you have managed to completely eliminate negative people from your life.

2) This person may be you! You may want to take take a look at yourself.

Call them what you like; Room’s hoovers, Negative nancy’s, Debbie downers’, if you are unlucky enough find yourself in a room with several together prepare for a one way ticket to the ultimate pity-party of bitching and whining. Having endured several such pity party’s just like the one described, I have come up with the following ingenious plan.

Simply put, why not sign them up for a BTE? (Brain Tumor Experience.) The ultimate in forced cognitive reprogramming. The basic package would involve taking them though the full works of what I have just experienced. Like having a diagnosis of some random brain tumor or other, complete with an uncertain prognosis and letting them stew for a week or two to wait on ‘test results.’ Meanwhile this gives the perfect amount of time to complete the 8 steps required for complete mental recalibration.

Required Steps

1) Shit one’s self

2) Panic

3) Have a break down

4) Get it back together

5) Realise some hard truths

6) Question what really matters in life

7) See who their friends really are

8) Develop the required mental resilience to overcome and succeed

All before finding out that was all an elaborate hoax courtesy of _[insert name here]_. (Results may vary)

This may seem like a very mean and extreme way to make a point (Not to being mention being completely illegal!) But you could argue after a BTE it’s certain that life’s problems would seem instantly smaller and the key elements of having a life of fulfilled contentment would certainly be more clearly defined. If I have learnt anything from my very own BTE it’s:

Have love in your heart for others – in every form – Nothing else really matters.

Don’t aim for perfection or plan too carefully. Your race may be shorter than you anticipate.

I may come back to these musings as they occur to me as it’s fun topic to explore!

Back to Work, Motherf*cker!

I flew back to Bristol on the Thursday evening after Christmas ready for my clinic on the Friday 30th of December. It was to be exactly 3 weeks since my fateful accident that had turned my life upside down.

This was a pre-booked clinic from a while ago, which meant that it was filled with a diverse mix of patients. From routine eye exams including a playful dash of dry eye work and some random contact lenses appointments to finish. A standard day in many regards and with little-to-no fanfare or specific welcome back to work protocol! It was almost like the last three weeks was an unpleasant dream.

To my surprise and great relief not all of my patients had heard about my accident. For those that not heard, I just let be and for the ones that had, I had gotten pretty good at giving a brief synopsis of all the interesting and comical points in as short a time as possible, stopping short of any mention of ‘Bob’ for the time being. Suffice to say I did run a bit later on the appointments from the ones’ that knew vs the ones’ that did not!

I’ll be 33 in a months time and one thing I’ve realised about myself (It took me a while, mind.) Is that I need purpose in my life. If I feel like I have a goal to achieve and a function to fulfill I will work towards that end steadily and with drive. So it felt good to get back at it as soon as I was physically fit and well enough to do so. The worst thing I could have done was to have sat twiddling my thumbs with nothing to do & with the added weight of uncertainty bearing down on me. The sense of normality my return to work gave was very reassuring and in my little world of eyes, very little had changed. Like an anchor in a storm I used my work as stabilising aspect of my life when all else was up in the air.

I continued in this capacity until the 19th of January which was to to be my last day before I embarked on a final pre-surgical flurry of fun adventures. I had an excellent send off with some bowling and food as the team bid me farewell for a wee while. (I did use Bob as my excuse for a terrible bowling performance.)

The Beardy boy’s who suck at bowling!

Egypt

I had fancied some winter sun and I hadn’t had cheeky holiday for a while. If this wasn’t a good excuse for one I didn’t know what was so I got online and had a look at what was available this time of year. Turns out, Egypt was perfect, Sharm El-Sheikh to be precise. So I packed up and jetted of to Sharm. As I was travelling solo, I was able to dictate the pace according what I fancied. I started off slow, taking it all in. Enjoying the sunshine and the various restaurants and poolside bars. It was a perfect temperature (for an Irishman) of around 25 degrees. I got a work out in at the gym before handing in my ‘man-card’ and letting myself be completely pampered in the hotel’s spa, chocolate body scrub and all. (In for a penny in for a pound!)

By the 3rd day I began to get itchy feet and decided to venture further afield with trips to a local Coptic Church, Mosque and the Basar. A real highlight for me was quad biking in the Sinai desert which was phenomenal. It was such a rush to be blasting through the dunes and mountains of South Sinai leaving a nothing but a cloud of dust in our tracks.

It was on this trip I met a Portuguese girl called Andreia who worked for an energy company in Brussels. There is something about the Irish and the Portugues getting on well, maybe it’s the shared Catholic heritage or a common outlook on life of not taking ourselves too seriously but we struck up an instant friendship at a time when I wasn’t feeling or trying to be overly sociable. Her presence and unique character made the experience all the more enjoyable and it was fun experiencing new things together.

After a short break from quad biking we enjoyed some food. A fire show was then put on and we finished the evening with some star gazing. The drive back in the dark lit only by the lights on our quadbikes was something I’ll not forget quickly as the desert temperatures plummeted around us. I couldn’t resist myself by whooping & yelling into the night air with my voice all-but drowned out by the engine noise & rushing wind. (Evidence you can hear pictures if you are enough of a Star Wars fan.)

I also had a boat trip on the cards which took me to some of the local snorkeling spots. Now officially I wasn’t meant to swim or snorkel as I was (technically) still at risk risk having of a seizure. But the way I saw things, I had not experienced a seizure in my entire life up until the point, at which I was forcibly removed from an E-scooter (by a car). Thus, I viewed my own individual seizure risk to very low indeed and surely a little dip couldn’t hurt. Could it? I was a keen snorkeler to begin with and can free dive to a decent ability so I loved the experience of being back in the ocean and exploring the various coral reefs. I savored every moment of it & it done me the world of good. (I did put off learning to dive for another trip!)

Andreia and I stayed in touch and soon were planning a trip to Farsha mountain shisha bar. Basically it is a must see if you come to Sharm El-Sheikh. This very quirky place is very atmospheric and built like a rabbit warren into the hillside with the beach at the bottom. It kind of reminded me of a place where characters like Captain Jack sparrow or Sinbad the sailor would hang out! For the best atmosphere go there in the evening time to see it lit up in all it’s glory!

It was with a heavy heart that I made my return trip to Bristol. I was pleased that I had managed to enjoy a really well balanced trip, with just enough adventure to be exciting. My departure left me feeling simulationaly energized yet relaxed and ready for whatever challenges were to come.

The Pre- Op

My surgical team had since been in touch and my pre-op had been scheduled 31st of January. As you would expect it began with another MRI except this time with an imaging technique called DTI tractography. I had figured they would use these scans to compare if ‘Bob’ had grown and to get a better idea of the extract location of the nerve fibres that served the affected areas.

Next up, were the numerous checks by various nurses who checked everything ranging from blood pressure, ECG’s and several blood samples were taken. I also got to meet my speech and language therapist that would be present throughout my surgery. Her was name Maddie and she greeted me with a warm smile. I estimated her age to bit older than me but not by much. She had dark hair which was naturally curly combined with her golden skin gave her a Mediterranean vibe. Apparently Maddie used to work in marketing until she gave it all up for a job within the neuro team as a speech and language therapist. I was very impressed when I heard this and imagined the work to be quite a bit more rewarding yet equally challenging. As soon as she heard what I did for a living she was immediately interested and started asking me about her own eye troubles and we ended up off on a tangent!

Maddie and I worked towards getting some baseline results using a program on her laptop that we would be using in the actual surgery while they were operating on the most sensitive parts of my brain. Basic games would be used like verb association eg. An image of a book would be shown and you would expected to say something along the lines of: “With a book, you read.” Simple enough stuff until there’s people poking around in your brain. Those got progressively more complex until they were at the level of ‘How many things beginning with the letter ‘S’ can you name in a minute.’ To which I drew a blank half way through!

I even got to chat with my Anaesthetist, a lovely lady called Gemma, who nipped in briefly. She seemed nice and very switched on so I was confident to be in her hands. Gemma was able to give me an indication for the expected date of my surgery. Judging by the logistics and the amount people involved in some aspect of my surgery it was likely to be on the 16th February but this would be officially confirmed in due course. So that meant I had time to squeeze another adventure or two in before then.

To Brussel’s and back again

My Portugues friend Andreia had offered that I must see Brussels one day and had offered to show me around. I’m not sure she had counted on me taking her up on that so offer so quickly but when you have a brain tumor and time to kill you don’t mess around!

So we formed a plan for a weekend adventure in Brussels. I found myself onboard the Eurostar from St.Pancras as our spur of the moment plan took action & I took the opportunity to brush up on my French (which is awful) via youtube. It’s crazy how quickly you can get to the heart of Europe, taking less than 3 hours in total. My mind thought of all the places I have yet to see and I made a fresh resolution continue adventuring as soon as I could after surgery.

The Belgians are most commonly known for their Beer, Chocolate and Friten (potatoes chips usually served with sauce.) I was more interested in the Tin Tin attractions and artwork dotted over the city. Tin Tin was created in Belgium and I’m certain it was a big influence for me growing up, with the adventures of Tin Tin taking me in-spirit at least to remote places of the planet like Nepal, Egypt and the Mayan ruins. With the main characters often finding themselves in some predicament or other. Omagh Library was plagued for a time with request upon request for the next book in the series!

There was a common theme to be drawn with allot of the statues in brussels, quite literally taking the piss! (see photos.) Brussels includes many historical sites with the many Church’s & Cathedrals, juxtaposed with some mega modern buildings where the EU is based. It was good to see were the EU operates from regardless on your feelings for it. I was surprised to learn from Andreia that the anyone who works there doesn’t pay any tax to the Belgian government!

Andreia who is actually responsible for the running of two Airbnb’s back in portugal (as her side hustle from her usual day job) proved to be a literal superhost and managed to juggle her responsibilities amazingly to allow me to experience all the city had to offer in only the few days we had. She had lived in the city for more than 5 years as well so she had got quite good at showing off it’s best bits. It was with more than a slight sense of ‘Saudade’ that I bid Andreia a farewell until after the surgery, whenever that proved to be.

Back to the Future

I didn’t have time to dwell too much on this as much as before I knew it I was on a train back to London again with the plan of meeting my closest childhood friend of mine, a fella called Dónal.

Dónal was the type of friend where we had known each other for so long, that we would happily drift in and out of each others lives with long periods of not seeing and not talking besides a random text (most likely in meme form, or a podcast/book recommendation) Until we finally got our act together and arranged to meet for real, only for us to simply pick up from where we had left off. I think this more common in Irish culture amongst among guys. Call me lazy but there is somethings about this minimal effort, low drama form of communication I love, but at the same time if anything serious went down I know he’d be there for me.

He had managed to bag (& treat me to) front row seats for the musical ‘Back to the Future’ at the Adelphi theatre. To put it bluntly there was so much talent on the stage I didn’t know where to look. It was a marvelous experience to behold. Not to mention the special effects were amazing and innovative. What’s more Dónal also had an inside connection in the cast who set up our very own private backstage tour where we got see how the props functioned and the Delorean car worked! It was truly amazing how little space they had to work with and that this meant the set design had to be very clever indeed.

Dónal and I had a lot of catching up to do not, not having seen each other for ages and needless to say loads had happened in the interim so we pitched up at a local bar and got to chin wagging. Time flew and I almost missed the last train back to Bristol because of some delays on the underground making it with two minutes to spare.

T day – Confirmed

The surgery was confirmed for Thursday 16th of February as Gemma had initially anticipated and I geared up accordingly. I was strangely calm in the lead up to Surgery, I couldn’t resist thinking things like ‘My last burger before brain surgery’ which kept things pretty real and gave me a sense of gratitude and finiteness.

The next blog will (at long last) cover the what actually happened on the day of my surgery and the challenges I faced (& continue to face) during my recovery. It should be a good one. Stay tuned.