surviving

The ‘T’ Word Part 14 – Getting fit for my operation

Run fat boy, run!

A moment on the lips…..

One thing that I remember being told time and time again was that as I got older I needed to get my fitness back.  When I was young, I was definitely guilty of taking my health for granted, after all in my late teens and early twenties I could party on a school night and still cope with work the next day.  I often worked at the Little Theatre Leicester until very late into the night, with no concerns as to how I would get up for work the following day.

By the time I reached my early twenties, I had been working backstage for years and mainly on the fly rail.  For the uninitiated, the fly rail is where scenery (typically large cloth backings) are hung and lowered into position on ropes for each scene change as required.  Modern professional theatres have what is called a ‘counterweighted grid’, the grid being the huge metal structure that holds the pulleys and ropes that the cloths are flown on.  Counterweighting means that a single fly person can raise and lower the huge cloths easily.  The Little Theatre Leicester did not have a counterweighted grid, which meant we built tremendous upper body strength by having to lift the full weight of the cloths often on our own.

Did I appreciate this? Of course not! In the same way that I didn’t appreciate the joys of being young and slim despite eating kebabs every Saturday, between the matinee and evening shows and drinking Ruddles County most evenings between scene changes.  This situation was made worse during performances of Grand Opera, which usually only had one scene change at the interval, giving lot’s of time for playing cards and drinking beer.

Me in the middle slobbing around on set at Leicesters Little Theatre with Nigel (left) and my oldest friend Andy (right)

My time at the Little Theatre came to an end as my career in Sales began and with it came the end of ‘slim Stu’ because with the career, came business lunches, business dinners and on the go snacks!  My Sales career started in the mid 80’s which was the era when petrol stations moved from selling just fuel and fan belts and became mini supermarkets.  This was a problem for me as this now meant that when I paid for petrol there was a huge display of chocolate by the till, and I LOVE chocolate.  After a while this earned me the nick name ‘The Confectionary Kid’ from my then manager due to the high chocolate to fuel ratio on the receipts submitted with my expense claims!

Over the years my weight went up and down and I discovered that I can gain and lose weight really quickly, so any periods of self control or dieting produced quick results but even short lapses reversed all the good work.  Diets just don’t work as a long term solution for me. I’ve always hated being the classic paunchy business man, but have really struggled with the self control to change things and I am also a comfort eater, so each time I have gone through periods of stress (which in sales is common) I turn to the naughty treats for consolation.  I guess this is what leads to the stereotype of the business man dropping dead from a heart attack on the squash court.

I joined my last employer back in 2011 and that job came with private medical care which offered an annual health check, so in 2011, I found myself at the BUPA health clinic in Solihull, sitting in a track suit in the waiting room with a banana, feeling very righteous. A nurse took bloods and measurements before I was introduced to my Doctor for the morning, who was a lovely chap but was very overweight, more so than me. 

He briefed me on the VO2 Max test that I was about to take and I was then taken off and wired up to a heart monitor and put on an exercise bike with which they tortured me to get my heart rate up to 90% of it’s maximum rate. After this test, what was left of me was taken back into my Doctor’s office for a review of the day.  We looked through the results and then the Doctor sat back in his chair and having given me advice on being obese and unfit, he patted his big tummy and said “I realise that I am not setting a good example, my wife is such a good cook, but it doesn’t mean that it’s not good advice”!

For the following 7 years I made this annual pilgrimage to Solihull to be told officially that I was a fat git, and the last straw was when I was sitting in the waiting area with my banana when the Doctor from my first visit came in.  The bastard had lost weight! He spotted me, patted his now flat tummy and said “I’ve laid down the gauntlet Mr Hannah”.  How could he do that to me!

A fatter me in action giving a training session. (That is a robot arm that I am drawing not a willy!)

This now meant that I had to do something as my last excuse was gone. Around the same time our kids had taken up running and participated in Parkrun in particular. Parkrun for those who don’t know, is an organised run in local parks around the world, where you run 5K and get an official time.  It’s wonderful because it is a social as well as a sporting event and all abilities can take part.  Now, apart from the occasional swim, neither my wife nor I did any exercise, so running 5K (3 miles) was a massive challenge, so how were we to start.  we were introduced to an app from the NHS called ‘Couch to 5K’, which should take you from zero to hero in 9 weeks. 

Our first Parkrun was accidental, we had registered and had decided to run/walk the route but not take part in the actual Parkrun, however as we got ready to run, we were standing by the tail walkers (they walk the route to make sure that all participants are back at the finish line before the event is officially over and that no one is last) who, once we explained what we were doing, laughed and told us to get running and stop making excuses.  We were so glad that they gently bullied us into starting as we really enjoyed it.  As I write we have done around 34 Parkruns and still loving it, and we have even run a 10k in New Zealand in the ‘Round The Bays’ charity run in Wellington.

We downloaded and installed the app, chose our coach (Jo Wiley), bought some running gear and headed off out on our first session. This consisted of a 5 minute warm up walk followed by 60 seconds running, 90 seconds walking etc to reach 8 minutes running in total.  How hard can it be we asked each other?  Bloody hard as it turned out.  After our first 60 second jog we found ourselves leaning on a fence gasping like a goldfish that had jumped out of its bowl!  We finished the session absolutely knackered and really wondered if this was going to work.  9 weeks later we could run for over half an hour reaching 5K without stopping, not fast but at least we could do it without fear of cardiac arrest, it was amazing and we were hooked.

My problem is still weight.  BUPA explained to me that you can be fit and overweight at the same time and they could see that my fitness had improved drastically but I was still carrying too much weight. This is still my on-going challenge although I have made some progress since my brain tumour diagnosis.

Fitness and Positivity Got Me Through.

Retirement was just getting underway when I got my diagnosis of brain tumours and despite COVID19 lockdowns pausing Parkrun, we kept up with our running and did our best to maintain our fitness throughout the lockdowns.  Typically, I was feeling really well when we got the news and I do think that being fitter put me in a better place mentally but I also knew that the operation would set me back, as I would be laid up recovering for quite a while.  Also, having two different types of tumour, meant having two operations with recovery in between, so it was sadly not a one off interruption of our fitness regime.

I was reassured to hear from both my Neurosurgeons that the fact that I was keeping myself fit was going to help me to cope with the operations and the recovery afterwards.  I have talked to fellow warriors on the Brain Tumour Charity Facebook groups about how different people with different symptoms manage their fitness, after all, for me I had progressing symptoms but up until the first operation to remove Marty the meningioma, none of my symptoms had yet stopped me running.

I have been inspired by the ingenuity of people to overcome the restrictions their tumour placed on them.  Some run like me, others walk or swim and many do as much as their body will allow or cope with but in every case, we all agreed that keeping fit, in what ever way you can made us feel better able to cope with the physical and mental challenges of what we all have to go through.

That brings us to the other way that we can keep healthy even when our bodies resist and that is to improve and protect our mental health.  In previous posts I have discussed my belief in Stoicism so I won’t go over that again suffice to say that this was the tool that I used to strengthen my resolve to survive and fight.  Call it what you will, Stoicism, positivity or sheer stubbornness, keeping your mind focussed on positive thoughts, focussing on the things that we can control as we go through the hospital system and undergo whatever treatment we need is vital.  We didn’t choose to have brain tumours but we can choose how to react to whatever comes our way. Therefore, even if you are not able to do any physical fitness training, time spent on mental well being can be just as beneficial in my belief. 

In place of a gym maybe look at taking up the offers of counselling and look at this as the gym for your mind.  One thing I believe after discussing the subject with other warriors is that we cannot afford to let negativity take hold as this can undermine a positive outcome or even ruin any time we have left for those of us for who victory over our tumours is impossible.

Somehow I managed to run up to the view point of Mount Victoria, in Wellington NZ without hospitalising myself!

So if you are starting or already on your brain tumour journey but feel you are struggling to cope, try something, anything to get out and about in the fresh air and exercise in whatever way you can.  Just put one foot in front of the other and go, walk, run whatever you can manage, even if you can only get to the garden gate, if that is a challenge then the gate is your finish line and your success.

Stu x

https://www.thebraintumourcharity.org/

The Brain Tumour charity has been a great help to me since my diagnosis. They have a podcast which is always of interest to people with tumours and their families and also have the ‘Brian App’ ( yep that is spelt correctly, it is ‘Brian’) which offers advice and the ability to track your symptoms, appointments and treatments.

The ‘T’ Word Part 12 – “Buried with Ham”

How Near Death Experiences Change Your Perspective.

Have you ever given any thought to your funeral? I have and I always end up feeling miffed that I am going to miss out on a party!

In Yorkshire there is an expression “Is he being buried with ham”?, in other words is there going to be a wake? I’ve decided that when I do go I’m going “up t’chimney” but my family are only allowed to send me off with ham if they promise that it will be an opportunity for laughing about all the dumb things that I have done throughout my life.

There have now been two occasions when they very nearly needed to put an order in for the ham.

Thinking that you’ve had it gives great clarity to life.

It’s interesting to me how a near death experience changes your whole perspective on life. When it comes to my two brain tumours it started with a very vague diagnosis of “you have two tumours but we don’t know what they are”. Human nature immediately makes you assume the worst, maybe as a protection mechanism? As I write this blog entry, I am now one Tumour lighter with Marty the Meningioma gone and according to my Neurosurgeon the most dangerous operation is now out of the way.

We still don’t know for sure but it is still being assumed that Gary the Glioma is low grade in which case I should be good for a long time once most of him has been removed. This will mean regular MRI’s for the rest of my life but I don’t mind them and it will be an on-going excuse to have days out in Leeds and eat at Mowgli’s, nom!

The Creature from the Rather Pleasant Lagoon.

Photo by Pixabay on Pexels.com

My first genuine near death experience was actually a diving accident that I had many years ago when on holiday in Cyprus with some friends and their kids. Cyprus is gorgeous and so was our hotel whose name escapes me and at the time was quite new. It sat on a cliff top looking over a beautiful lagoon which you accessed by some steps that were cut into a cliff wall.

It was a great holiday with lots of laughs including us all piling fully clothed into the pool on the last night party for no other reason than we were told not to. There was one exception to these fun filled days and nights, an incident that my wife and I played down at the time so as not to spoil the holiday.

After a couple of days of slobbing around in the sun I was woken from a snooze by the sound of activity in the pool which turned out to be a local SCUBA diving school. They were giving holiday makers the chance to try out diving in the safety of the pool with the hope that they would book a paid dive session in the lagoon. SCUBA diving was something that I had wanted to try for a long time so I skipped the tryout and just booked myself onto the next dive session.

Large Aquatic Mammals.

A couple of days later I found myself at the diving centre having a safety briefing about clearing water from your mask, understanding your gauges and other safety basics. We were only diving to 6 metres which didn’t seem too challenging and we were with a seasoned ex-military diver who was our instructor. After this it was time to put on our wetsuits and other gear. When I saw myself in the mirror I was somewhat disappointed to see that I looked more like an upright walrus than a brave explorer of the unknown depths.

Then as a group we waddled down to the waters edge like the oddest looking bunch of penguins ever seen and one by one followed our dive instructor into the sea following a blue guide line, each penguin disappearing under the waves with a surge of bubbles until it was my turn to follow them. Once under the surface, the weights that had been so cumbersome out of the water became helpful as they helped us to become buoyancy neutral and like all large aquatic blubbery mammals, I was far more graceful in the water than out of it.

It was wonderful down there. The water was clear and once we reached the sea bed we were allowed to disperse around the area a little and enjoy the freedom of being able to explore without needing to surface regularly to take a breath, I absolutely loved it. I found myself a sandy spot where I could sit and let the fish swim around me, it really was other worldly.

Eventually our time was up, we regrouped, swam back to the shallows and once again began our penguin waddle back to the diving centre.

I was absolutely buzzing when I got back to the hotel and couldn’t stop talking about the dive so when a few days later the dive instructor saw me by the pool and offered a one on one dive down a bit deeper to 12 metres I had no hesitation in saying yes.

Bad Omens & Bad Ideas.

Photo by Mau00ebl BALLAND on Pexels.com

I suppose that looking back, I should have heard little alarm bells ringing, when on the day of the second dive, my original experienced instructor was not available and was replaced by a newly qualified instructor. We travelled to another bay near the hotel that provided the deeper dive and were soon geared up and entering the sea.

The beginning of the dive was even more magical than the first dive but as we got further from the shore line the sea current began to get stronger, which for an inexperienced diver was unnerving and before long, visibility began to reduce rapidly and I realised that we had lost sight of the blue guide rope that marked the route back if we wanted to stay submerged.

My instructor had obviously realised this too and he gave me the hand signal to wait in position as he swam off, presumably to look for the rope so as not to spoil the dive by making us swim back on the surface. This was his big mistake, leaving someone on only their second dive alone.

The minutes ticked past with me alone in the murky green fog of the turbulent water and I realised that he had no chance of finding me with that level of visibility. I also noticed that my air supply was getting low as with such a short dive planned, we only had single air tanks. I decided to surface as I guessed that in the end he would do the same. As I surfaced, I instinctively removed my regulator from my mouth, This was my big mistake! Being buoyancy neutral for diving meant that I was lower in the water than a normal swimmer would be when treading water and as I removed the regulator and took a breath I was hit in the face by a wave and inhaled a lung full of sea water. The shock of this caused me to react by flipping backwards away from the water but this action along with the weight of an air tank on my back took me just under the surface of the water laying on my back like an upturned turtle and I breathed in more sea water.

I was in big trouble.

The water inhalation triggered a panic reflex that an experienced diver would not have had and of course an experienced diver would have never gotten themselves into a position like this in the first place. I was now unable to recover myself and was without doubt drowning. If you’ve ever thought about the moment of your death, you might hope that your last thought would be of your family or something profound but mine was ‘what a stupid way to die’.

At that moment a pair of hands pushed me upright, my instructor had found me. He then swam around to my front and inflated my buoyancy vest (something an experienced diver would have done for themselves in the first place upon surfacing) and finally put my regulator back into my mouth to get some oxygen into me, but not before I had choked up a large amount of sea water. He made me rest until I had calmed down and then we made our way back into shore, although I was so exhausted by the accident that he had to tow me some of the way back.

Something is up with you!

As we drove back to the hotel neither of us said much. He looked like he was in shock and was probably thinking that he would never teach again. We both made mistakes but mine was the kind of mistake that proper PADI dive training would drill out of you through repetitious practice. His mistake was to overestimate both my fitness and capabilities.

I decided not to tell my family and friends about what had happened so plonked myself on a sun bed and announced how great it was, apparently not very convincingly and after 17 years of marriage my wife, Andrea, could tell that something was wrong. She forced a confession out of me later when we were alone but agreed that we shouldn’t tell the others.

Reconsidering my priorities.

For the rest of the holiday I couldn’t help but think a great deal about what so nearly happened. I had always wanted to be able to lay flat on a flight but in the hold in a bodybag was definitely not what I had in mind. How would my wife and kids have coped with losing me and how would their life be?

These thoughts eventually gave way to thoughts about my life so far and what was important to me now and what wasn’t, after it so nearly ending. I started to become more aware that many things that I had treated as priorities were important simply because society said that they should be, chasing promotion and money for example. But the accident had so nearly deprived me of the things that truly mattered such as my wife, kids, family and friends.

No one will build a statue of me and I don’t care.

Photo by Mike B on Pexels.com

I also began to spend time thinking about what I had and had not achieved in my life. It seems to me that people often find themselves worrying about not being remembered, not making their mark. It’s why so many chase fame in a desperate bid to be ‘someone’, but just think about how many have enjoyed brief fame only to be unable to cope with the obscurity of normal life that followed. Even those who find fame and are not forgotten don’t benefit in any way from it after their death and how much did they sacrifice to achieve this fame.

Stoicism teaches that life is for living now, what is the point of sacrificing everything for fame and fortune just to end up alone and paranoid about losing your fame as so many so called celebrities do? The Stoics have an expression ‘Memento Mori’ which translates as ‘Remember that you (have to) die’. This is not intended to be morbid, it is intended to be a kick up the backside to get on with life as you do not have time to waste.

As part of my reflection after the diving accident, I became fascinated with how brief and small a human life is on a universal scale. This lead me to understand that while my presence and disappearance will go unnoticed by the world, I really don’t care because in my little corner of the universe I do matter to the people who matter to me.

I will undoubtably never have a statue erected to me but do you honestly think that Nelson, Churchill or Wellington know or care that they have been somehow immortalised as a granite pigeon toilet.

There is a great line at the end of the movie ‘Star Trek Generations’, a movie very much about growing old and legacy, spoken by the character Captain Jean-Luc Picard (Patrick Stewart) “What we leave behind is not as important as how we’ve lived.” This line really resonated with me and fitted in with the new attitude to life that I had after the accident. Time with the people I love and care about was the most valuable thing that I could have because, it is inevitably going to end, so it is to be treasured.

Legacy is not that important.

For anybody worrying that they have not made a difference or will be forgotten after their death just remember that in a few billion years even Einstein will likely be forgotten. Egyptian society lasted for 3,000 years, longer than Christianity has existed and yet only a tiny number of even the most rich, famous and powerful of them are remembered.

My advice, for what it’s worth, is to remember that not everyone can change the world but you still matter to those who know you. Enjoy life to the maximum that you are able. Today matters and tomorrow is unknown.

As my accident and my tumours have taught me, life could be over much sooner than we expect and tomorrow is definitely not guaranteed so why waste today?

PS: My wife never let me go diving ever again.

PPS: I will definitely be buried with ham!

Stu x

The Brain Tumour Charity

https://www.thebraintumourcharity.org/

The Brain Tumour charity has been a great help to me since my diagnosis. They have a podcast which is always of interest to people with tumours and their families and also have the ‘Brian App’ ( yep that is spelt correctly, it is ‘Brian’) which offers advice and the ability to track your symptoms, appointments and treatments.

And, stand down again!

Operation number 2 cancelled for a second time. There is only one thing for it, a Wetherspoon’s breakfast and a curry tonight!

I’m not upset, I have got myself to a place where I am excited to get the operation done but equally since my Neurosurgeon doesn’t think it’s urgent then I am perfectly happy not be messed with for a bit longer.

“A pint of cobra and a madras for me please buddy”

Stu x

A Date with Destiny…..or not

Well I have a new date for my Craniotomy but I’m keeping it to myself this time. Everyone is so kind and supportive that I can’t bring myself to make a big announcement and waste everyone’s kindness and emotional energy.

Just going to announce when it’s done, and from reading posts on The Brain Tumour Charity site from fellow warriors, I could have another three attempts at this so I’m going to have a think about where my next post cancellation drinks will be 👍

Stu x

https://www.thebraintumourcharity.org/

The ’T’ Word Part 11 – A Fear of Flying.

Conquering fear with knowledge.

As I approached my first operation to remove one of my two brain tumours, there was so much that I didn’t know about what would be happening to me that my immediate reaction was fear. By the time that my operation day came I was able to be calm, cheerful in fact ( something that I have discussed in earlier posts).

I have mentioned before that finding Stoicism was a huge help but it wasn’t the only thing that helped. The other discovery that I made was the power of knowledge over fear.  I read somewhere about the belief that many of our fears (operations, flying, dentists etc.) come from a fear of the unknown, a lack of knowledge about what is happening or going to happen.

Be afraid, be very afraid!

The first big fear in my life that I had to conquer was a fear of flying. I actually thought that I loved flying when I first flew in 1985 (the year I got married) when I had the chance to travel to Malta for a product launch. On the outbound trip someone else in the group offered to drive the minibus to the airport, which meant that I could drink with the rest of the group, so it was a slightly squiffy Stuart that boarded the plane. I loved the thrill of take off, the beauty of the blue sky when we were above the clouds and the amazing views of Malta when we were on approach to land.

For the return trip, I was volunteered to be the driver when we arrived back, as I was the youngest  and therefore would be the least tired (apparently) when we got back to Heathrow. This meant that I didn’t drink before the flight.  My experience of flying this time was horrific, take off was terrifying and as we banked to set course for home I felt like we were going to fall backwards out of the sky despite the fact that in reality we were probably already moving forward at over 180 miles per hour. 

Two kids in 1985 ready for their honeymoon.

This was now a problem as within a couple of months I would be flying to Italy for our honeymoon, so on top of the terror of the Grooms speech, I was now quietly stressing about the flight.  Our wedding day arrived and as amazing as it was, the Grooms Speech nearly made me throw up!  These days some Grooms refuse to make a speech and I don’t blame them. Then came the flight to Italy for the Honeymoon.  As expected it was awful and I had to quietly zone out to remove myself from the situation (my coping mechanism for flying that I used for a good few years) as I didn’t want to spoil the excitement for my gorgeous new wife.

I have never let my fear of flying stop me from travelling anywhere but it spoilt the start and end of many family holidays. I somehow managed to hide my fear from our kids as I didn’t want them to be scared too.  

Never show weakness, especially to your friends.

I don’t look old enough to be at work!

Some people especially male friends can be pretty merciless when they discover your weaknesses and on one business trip in the late 1980’s a large group of us toured France in order to visit all of the production facilities of the company that we worked for.  Every damn take off was accompanied by lots of faux screaming about crashing….bastards!

At least back then I put less strain on the Eiffel Tower.

I did get some justice though on one of these mates.  Chris and I decided to go up the Eiffel Tower on one of our free days, so we took the two lifts to the main viewing platform. I walked out and looked out over Paris (through the anti jump mesh of course) and said something to Chris about the view but got no reply.  When I turned to see where he was, all that I could see were the tips of his fingers gripping the door frame and Chris’s eyes peering out.

I wandered back over to him and asked what was wrong “I can’t come out, I just can’t” he replied which made me let out a loud laugh, “so you’re Mr brave when it comes to flying but you’re scared of this.  At least this is bolted to the ground!”  I never let him forget that.

Becoming a frequent flyer

As my career progressed I was required to fly with increasing frequency so I decided that I needed to somehow conquer this fear of flying.  I researched everything that I could about flying, how airliners are flown, what the procedures are that pilots follow when on flights, and instead of zoning out with some music, I listened to the aircraft, to what noises they made, when in a flight to expect them and what they were.  With my growing knowledge & familiarity I felt the fear steadily reducing until I suddenly realised that I was now actually enjoying the experience and I was now one of the relaxed people chilling in departures.

With this new found knowledge I would find myself grinning like a big kid as the flight crew pushed the engines to full thrust for take off and you got that kick in the pants as the brakes came off.  The thrill of watching the world whizz by and that amazing feeling of freedom from ordinary life as the aircrafts nose pitches up and begins its climb into the sky, fantastic.  I wasn’t even bothered the time when just after push back at Copenhagen airport we had to pause on the apron to let an engineer on board who after some rather alarming hammering cleared us to take off and no one wants their aeroplane fixed with a hammer!

I’ve spent many hours on an SAS Bombardier CRJ900, even one fixed with a hammer.

Another thing that I discovered as I transitioned from a scared flyer to someone who loves it is that you can easily forget what it is like to be scared of it.  On another trip to Denmark with a work colleague I noticed my good mate Phil gently tapping his finger on the underside of the tray table in front of him.  When he saw me notice this, he explained that he had seen someone, about his fear of flying and one of the coping methods they had taught him was this tapping under the table so he could subconsciously feel that he was in fact keeping the aircraft in the air. I thought it was a great idea but a few minutes later I completely forgot our conversation.  In my excitement about a low approach over Copenhagen I blurted out “Wow look at that view, we are really low” Phil gave me a dark look, started tapping his finger frantically on the tray table again and replied with a curt “no thanks”, I can be such an insensitive doof sometimes!

Passing through Kastrup Airport without visiting Steff’s Hotdog stand should be illegal.

On yet another flight to Copenhagen I discovered that another of my colleagues, Reetu, was not a great flyer. The final approach into Copenhagen’s Kastrup Airport is over open water leading to the North Sea on one side and the Baltic Sea on the other so is frequently windy as you can imagine.  On this flight it was a day when it was extremely windy on approach and on the route from Birmingham to Kastrup, it is normal with SAS airlines to fly on a reasonably small plane, the Bombardier CRJ900 with only two seats on either side of the aisle.

As we descended I looked across at Reetu who was gripping the arms of her seat and looked very alarmed. What she couldn’t see was that we were approaching the runway threshold almost sideways on, something that I could see through the window on her side of the plane.  As usual with that kind of landing, the pilot flying waited until the last moment before lining up the aircraft with the runway and cutting power.  We hit the ground with a loud bump and Reetu looked very pleased to be down!

Big Bird

Without question, my favourite aircraft is the enormous Airbus A380, a double decked beast that makes a Boeing 747 look small.  We have flown on A380’s many times on our trips to New Zealand, both with Emirates and Qantas.  One flight that I especially remember was on an Emirates A380, flying the last 7 hour hop from Dubai to Birmingham.  We left New Zealand basking in summer sunshine but back in the UK it was the depths of winter and a huge snow storm had blanketed the UK.

An Airbus A380, in my view the most beautiful aircraft ever built.

As we crossed the English coast our pilot announced that we were in a holding pattern over the south of England to give Birmingham Airport time to clear the runway of snow but not to worry as we had plenty of fuel and plenty of coffee. After about 20 minutes I felt the plane accelerate but the pilot immediately made another announcement that the good news was that we could land but the bad news was that we were being diverted to Manchester Airport.  This was a real pain as Birmingham is a two hour drive from Manchester especially in bad weather and of course our damn car was in Birmingham, so we would all be put in taxis for a terrifying high speed drive on a snow covered M6.  Although Manchester Airports’ runway was still open, the weather was appalling and I warned my wife that our landing could be a bit rough.  When it comes to flying my wife always used to be the confident one but now it is her that gets worried and my little announcement didn’t help.

Despite her size, our A380 was bouncing around like a toy and in another moment of classic Stuart insensitivity, I had my ‘In Flight Entertainment’ screen set to view the CCTV camera mounted in the planes tail fin.  This unfortunately gave a perfect view of the runway lights which were jumping around the screen as the plane bounced around on our approach.  There were a lot of nervous looking people on that plane (apart from me sitting there with my inane grin on my face) and my wife was now holding hands with the woman sat next to her that she had not met before the flight. 

We slowly descended and after a while I realised that not only should we have landed by now, I could also hear the sound of the engines spooling back up.  “I think we are going around again” I said, which did not cheer my wife and her new buddy up one bit.  Sure enough we heard the loud clunk of the wheels retracting as the nose of the plane finally pitched up and the huge machine began to climb back into the sky.  I calmly pointed out that the pilot will not put us at risk and go arounds are no big deal.  In fact we have landed many times in Windy Wellington (NZ) and not had to go around despite this being commonplace for Wellington Airport.

We came in again (with my screen off) and this time the pilot nailed it and there was a cheer from some passengers as the wheels touched down.  I never doubted the pilot for a second. 

How I learned to love flying

So how have I gone from gripping the seat arms wetting myself to enjoying rough landings in a blizzard?  Knowledge, that is the secret.

The closest I will get to being an airline pilot.
This is definitely what to wear if told to adopt the brace position.

I knew that flying was always going to be a part of my life, both because of my work demands and because of having a daughter (and now Grandkids) living in New Zealand, so I set about learning every aspect that I could about flying an airliner. I watched endless take off and landing videos on Youtube (there are actually channels for this) and watched Aircrash Investigators on TV, this might sound odd but you soon realise how safe flying is, by the long time gaps between major incidents.  I once saw an episode about a Boeing 747 which tumbled about 22,000 feet before the crew recovered it and landed.  If they can survive that you know that you are safe.

Also there is the blindingly obvious fact that neither the flight crew or cabin crew would go to work every day if they thought for one second that they wouldn’t come home!  Apart from lifts, flying is the safest way to travel, safer than cars by a country mile.

So what has this got to do with brain tumours?

When I got the call from my GP to say that an MRI had found two brain tumours, I couldn’t help but be stunned by this news.  In that first call they couldn’t even tell me what tumours I had.  We found ourselves sitting quietly, trying to take it all in, the news that changed our lives.  I do remember feeling very calm the next morning. My wife and I sat quietly sipping our morning coffee together.  She asked me how I felt and to be honest I had got my mind into a place of acceptance, that if this is the beginning of the end, then I feel that I have been lucky enough to have had a good life.  I worried, not for me, but for her and our children but I took comfort in knowing that our adult kids are well equipped to stand on their own and that they would be there for my wife.

I’ve written about my first consultations with my Neurosurgeons in an earlier blog but the key thing that we did was ask a lot of questions, the good, the bad and the ugly, so that we had as few surprises as possible.  With the information that my surgeon provided I could approach my operation calmly.

I think that if I were asked for advice on how to cope I would say, take what you know and plan for your best life post operation. If the prognosis is terminal then you don’t have a moment to waste, you need to cram a lifetime into the time that you have.  If the consequences of surgery and treatment are going to be life changing then get planning and get your plans in line with the predicted outcome rather than dwell on how unlucky you feel.

Focus on being adaptable and out-manoeuvring your enemy within, so that you can retain a feeling of control over your circumstances.

I have also blogged and discussed with other Tumour Warriors the subject of not letting your hospital become this fantasy chamber of horrors in your mind.  Hospitals are staffed by people who just want the best outcome for you.

If you are on your brain tumour journey already or have just started, remember that old adage that ‘knowledge is power’.  Not knowledge from Dr Google but from your Neurosurgeon, from NHS online resources if you are in the UK, from charities such as the Brain Tumour Charity and of course through groups of fellow warriors online.  Arm yourself with knowledge and don’t be a victim of your tumour, be a survivor.  Make a plan, work around the problem and focus on what you can control and maximise those aspects of your life.  Try to find a way to accept that you can’t control everything so that the parts that you cannot change are just a part of your life now.  

Your new life is boarding now.

With this knowledge and way of thinking you can let go of the fear and enjoy life’s ‘Long Haul Flight’ with positivity, gratitude for the good things that you still have in your life, however small, and laugh in the face of adversity.

Photo by Pixabay on Pexels.com

It’s time to head to the departure lounge for your new life journey.

Stu x

The ‘T’ Word Part 10 – On the wind down from the operation that never happened.

It’s a strange feeling to be sent home from a cancelled operation, an anti climax that’s hard to describe. As the days and hours tick down to your operation (in my case a Craniotomy to remove a brain tumour) you expend a lot of energy trying to keep yourself together and still live your life even with this big event looming over you.

Those who’ve read my previous blogs know that I drone on endlessly about the benefits of Stoicism but it absolutely has helped me to deal with the build up and more importantly the big come down of being sent home with my unwelcome friend still in my head. Stoic thinking teaches that we accept that we cannot control events, only how we react, so I have not allowed myself to get down or angry.

Some post cancellation stoicism (well, beer)

No matter how Stoic you try to be though, the simple fact is that it’s exhausting staying calm and positive as you burn up nervous energy suppressing the little doubting voices that constantly try to sow doubt about the potential success of the procedure and of how you might be once it is done.

I have a lot of friends in the NHS, one very experienced friend pointed out that people who go into hospital with a positive and upbeat mental attitude do much better and have better outcomes than those who don’t, so all that energy spent on positivity is worth sacrificing in my view.

So it’s back to the waiting list and until the new date, trying to get on with life. It has really hit my wife hard as she was looking forward to me starting my recovery and hopefully leaving this period in our lives behind. She is feeling that life has once again gone on pause and with good reason.

I still have faith in my surgical team but maybe not so much faith in the funding and support that the NHS gets. The NHS is not the buildings, it’s the people. They and it’s patients deserve better than they are currently getting.

Stu

The ‘T’ Word Part 9 – The End of the Road – A long driving career is about to take a pause.

Photo by Mike B on Pexels.com

Hi All.

Driving has been a big part of my adult life and like many people dealing with brain tumours, I am facing the prospect of giving up my driving licence.  I had thought that I was going to lose my licence because of Marty my Meningioma, however this turned out to be an unnecessary concern and as I write I am still driving. However I have been told that after my upcoming Craniotomy to remove Gary the Glioma, I will have to stop driving for at least a year and will only then regain my license if I have not had any seizures.  If I do have a seizure, the clock resets to another 12 months.

My first wheels

I passed my driving test in 1978 and started driving for work in 1985, so cars have been my office, dining room and occasionally a bedroom for a long time. I expect that we all have fond memories of our first car and the freedom that it gave us.  In my case this was a 10 year old (1968) dark green (or as my buddy Richard called it ‘vomit green’)  Hillman Hunter estate / station wagon.  A modern 10 year old car can still look almost new but this was definitely not the case for British built cars from the 1960’s! I can still remember her registration number, KAW207E.  She was battered and world weary but I loved that car.

So many stories, so little time.

With the possible end of my driving life in front of me, I’ve been giving a lot of thought about my past experiences and thought that I would share a few of the stories.

My driving career got off to an inauspicious start when in an attempt to take some mates to Blackpool, I got confused and headed south instead of north on the M6 and didn’t realise my mistake until I reached Milton Keynes on the M1, I still get reminded of this 44 years later!

I became a Sales Engineer in 1985 and very soon was doing 30,000 miles or more a year, so driving definitely became a lifestyle. When on the road that much you can’t avoid getting in to a few sticky situations, some through your own impatience or arrogance and some through the efforts of others. 

Due to my own youthful impatience I once nearly hit a roundabout at 125mph opposite which, down in a gully, was a Little Chef restaurant.  I reckon that at that speed and with the lift that the angle of roundabout would have given me, I could have ended up in the roof of the restaurant! What a prat but I was still in my 20’s and that’s my excuse!

I got into all sorts of daft situations including falling asleep one lunchtime in a lay-by in the middle of nowhere in the Derbyshire Hills with my lights on.  Of course when I woke my battery was dead and there was no one to be seen.  In desperation I concocted a plan to jump start the car by putting it in reverse and then pushing off whilst sitting in it and letting the car pick up speed backwards down the steep hill on which I was parked.

There were a few potential problems but the most pressing two were that with the engine off I had no power steering and no power assisted brakes so if the car didn’t start I would be hurtling backwards towards a very deep reservoir out of control! The fact that I am here to tell the tale gives away the fact that it did start and I’m very grateful that no-one witnessed my stupidity.

There was one occasion I remember when my colleague and friend, Mike and I were sent to our then employers offices in Ashford in Kent so we drove down in convoy as we needed our own separate cars for the journey back.  It is a long trip when you have to use the M25 so by the time that we reached the last leg of the A20, we were really bored and stressed and to add to this, we almost immediately got stuck behind a slow moving cattle truck full of cows.

The road had dragged on for miles with no chance of overtaking when suddenly we saw a sign saying ‘Dual Carriage Way’ in two miles.  I was behind Mike and saw him drop back to give himself room to accelerate and I did the same.  Finally the road widened and Mike & I hit the gas.  This is where things went wrong because the dual carriage way turned out to be only a few hundred feet long and the lane narrows sign had been put EXACTLY where the lane narrowed.  

By the time we realised that we couldn’t make it past, it was almost too late and Mike, the truck driver and I all hit the brakes at the same time filling the night air with the sound of screaming tyres. We all finally stopped and I’m not sure if Mike noticed but a wave of liquid manure poured out of the rear of the truck and over the cab.  Mike sped off and I followed him as I didn’t fancy a confrontation with an angry and quite possibly shite covered truck driver!

In the ‘near death’ category I guess my closest scrape was when following a colleague along the A14 in the early 2000’s.  We were doing at least 70 mph when from a truck heading the other way, a huge sheet of plywood about 8 feet by 5 feet (probably from the trucks trailer base) flew into the air and landed upright on its end right in front of my colleagues car just a few feet ahead of him, it bounced back up and he drove straight underneath it.  I remember thinking that it was going to hit me flat on and would probably have taken the roof of my car off and possibly my head with it but in a split second it seemed to land and be sucked flat to the road, so I barely even felt my wheels go over it.  That was bloody close.

As I think back I can recall so many tales, too many to tell here but the ones that really stick in my mind came from the three months when I went truck driving.

I like trucking and I like to truck!

Photo by Lu00ea Minh on Pexels.com

The industry that I was in went through a stage of being a bit “hire and fire’ and at the same time there was yet another truck driver shortage in the UK so I decided to get a truck drivers license so that I would always have work.  Oddly enough, within a few weeks of passing my HGV test I did lose my job.  

To be fair to that company my head was not in the best place when I joined them so I don’t hold any animosity it was just one of those things.  Anyway, my wife suggested that I take some time out of selling and go truck driving while I looked for the right job & get my head sorted out.  Anyone who knew me had always known me as a suit, so the concept of Mr Sales Pansy Hannah doing anything as macho as truck driving would have seemed ridiculous. 

I got myself a job driving for a now defunct Leicester bakery, on permanent nights delivering bread to Tesco stores in Central London and the East End.  How they made any money sending a truck all that way just loaded with bread is beyond me and possibly why they went out of business.

They definitely ran things on a shoestring as my truck was old and knackered.  It was also big as although not an articulated truck, it had a now illegal internal tail lift, which meant that the whole truck was as big as the trailer of an articulated truck but not as manoeuvrable. This I will come back to but the first big problem that I had was when delivering bread to a Tesco store on the Bethnal Green Road.  This is in deepest East End country, in fact the cafe that was a favourite haunt of The Kray Twins, was only a few hundred feet from the Tesco store.

On one occasion I arrived just as rush hour was getting going, and because I was not a Tesco owned truck I didn’t have the privilege of driving forward through the delivery yard ‘In’ gate, no, I had to reverse into the ‘Out’ gate.  As I normally did, I put my hazard lights on, moved to the right side of the road and swung my truck across to the left to try and get her as aligned as possible for the reverse.  I then found I couldn’t get her into reverse, or forward for that matter, I was completely blocking the road and if you’ve ever been in London at that time of day you will understand when I say that within a couple of minutes it was chaos.  

I frantically pumped the clutch and tugged and pulled at the gear stick but nothing would work, then with one desperate heave it went into gear.  The trouble with trucks is that the engines are so powerful that they will move when idling and that’s what happened, the old girl shot off backwards with me shouting something along the lines of ‘oh cluck’ and with the truck racing backwards between two lines of parked cars I somehow managed to miss everything and get her under control.  What a bitch, she did that on purpose!

I mentioned that my old lady of the road was hard to manoeuvre and this became a big issue one day at another Tesco store.  The road past the yard entrance could not take a truck so you had to turn around in the yard after delivering and leave the way that you came.  The entrance was also narrow as was the road leading to it (the planning office have questions to answer I think) and there was a big sign say ‘truck access required at all times, strictly no parking’.

On this particular morning I arrived and some clown had parked their Mercedes saloon right on the corner (in front of the ‘no parking at any time’ sign) and I found my self unable to make the turn into the yard, unable to go forwards because of the road and definitely unable to go back or turn around.  The traffic stacked up in what seemed like seconds and this being London a chorus of horns began!  On one of several aborted attempts to make the turn a cyclist banged on my door to warn me that one of the trucks rubber loading bay bumpers was now pressing against someones windscreen.

There was nothing for it, the only way was into the yard, so I put the old girl in second gear and began to slowly make the turn.  Inevitably after a few seconds there was the unmistakable sound of metal on metal, as the side safety bars of my truck hit the Merc’, which I could see in my nearside wing mirror was now gently twitching as I continued forward.  My truck didn’t even react, she just plodded on, happily taking the paint off of the car and as a finale, ripping the wing mirror off too.

She finally broke free and carried on into the goods yard as if nothing had happened and of course hadn’t even picked up a scratch!  Being a newbie to this truck driving lark, I was mortified at what I had done, however I was followed into the yard by another trucker that I had started to get to know who thought that the whole thing was hysterical.

“If you’re going to make it as a truck driver Stu, you are going to have to toughen up mate” he said before advising me that the car owner hadn’t got a legal leg to stand on and I should do what all seasoned truck drivers would do……off load and sod off (sod is not the word that he used of course) and never give it another thought.

I took his advice and left, although I did give it another thought and I didn’t make it as a truck driver.

Life not behind the wheel

Photo by Pixabay on Pexels.com

Yes, I’ve had a lot of both funny and frightening experiences on the road but I don’t have any choice but to stop driving so I have been trying to apply a bit of Stoicism to the problem.  I can’t change the circumstances but I can control how I react.  With this in mind we have been readjusting our lives towards managing without a car as much as possible and in the process have started to really enjoy train travel.

Being retired helps in that we do not have to suffer the pain of commuting by train, that said we have been coming away from assessments at Leeds General Infirmary at busy times and given the choice between a busy train or joining the long lines of traffic misery, I choose the train every time.  We have armed ourselves with a travel pass which keeps the cost down and the Trainline app is a must as not only does it make it easy to buy your ticket, it is your e-ticket and also tells you what your next platform will be if changing trains, and that can save a lot of stress if your change over time is short.

We love walking and are lucky enough to live in a town where pretty much anything is within walking distance.  I have found that I don’t miss having to drive but I think I will miss having the choice and I still haven’t managed to get my first electric car which is a little frustrating but one day maybe.

Giving up driving after all these years falls in with the other sacrifices that are worth making to get as much time with family as possible and not risk long term catastrophe just for a short term benefit and pretending everything is fine.  After my next operation I look forward to the walks together with my wife, train journeys to places that we haven’t visited or to see family and eventually back out on our bikes and running together.  

These are the things that I am focussed on to keep up my determination and positivity.  Car’s are convenient but life can go on without them it just takes a little mental adjustment but it is the end of a long relationship with driving and although if I remain seizure free for a year after my operation I should be able to get my driving license back, I don’t feel like it will ever quite feel the same.

Stu

https://www.thebraintumourcharity.org/

The Brain Tumour charity has been a great help to me since my diagnosis. They have a podcast which is always of interest to people with tumours and their families and also have the ‘Brian App’ ( yep that is spelt correctly, it is ‘Brian’) which offers advice and the ability to track your symptoms, appointments and treatments.

The ‘T’ Word Part 8 – Stewie, Know Thyself. Coping with possible changes.

Hi All.

The title of this blog paraphrases a quote from Socrates (Man, Know Thyself) which came to mind when I was recently reading about the possible effects of my upcoming Craniotomy and tumour de-bulking.  I’ve read about memory loss, loss of behavioural filters and even personality changes.

This worries me as it’s taken 59 years to perfect being this annoying and I don’t want all that hard work undone by Gary the Glioma!  

I’ve spent most of my working life in industrial sales and marketing.  I’ve regularly made presentations to large groups of people, even in French on one occasion.  I’ve met people that I didn’t know day in and day out and I’ve even had to endure interviews where all six finalists spent a day together effectively fighting it out for the job (I got the job by the way) so it seems contradictory when I tell you that I am actually shy by nature. 

Me pretending to be confident!

I used to find talking to girls that I didn’t know very intimidating and the only one that I ever had the courage to ask out on a date the first time that I met her was my wife, now there’s Kismet at work!

The Little Theatre Leicester – Where I spent most of my misspent youth.

I worked hard to present a confident exterior during my years at The Little Theatre in Leicester and my shyness is why I stayed strictly ‘back stage’.  Even though I had loved the few times that I had been persuaded to act on stage, I could never overcome that acute shyness to perform at The Little’.

It’s odd then I guess that I would pursue a career in sales.  What motivated me was my need to feel that I was providing my then wife to be with the best possible life style that I could.  I loved my job on the Motor Control Sales Desk at the Electrical Wholesaler for who I worked, but the job offered no promotion prospects and paid poorly.

The opportunity to get into sales came in 1985 when the company’s Sales Director, Stan, had to have heart surgery and would be off work for quite some time.  I remember it being my wife’s suggestion and she thinks that it was me, however whoever’s suggestion it was, we came up with a plan to put the idea to the company that I could cover in a sales role while Stan was laid up recovering from his operation. 

The idea was that I would begin to smarten myself up over a few weeks before talking to the Managing Director and making my suggestion.  Somehow I found the courage to speak to the MD, who was surprised but after talking over with Stan was persuaded that it could work and if it did work I would be kept on in a sales role even after Stan returned.

My first day arrived and I will always remember the reaction of surprise when ‘Salesman Stu’ suddenly appeared in the office in a smart suit, with smartly cut hair and shiny shoes!

I’m the boy in the red tie trying to look professional sometime around 1990.

The first few weeks were a doddle as I just accompanied Stan on his rounds to meet the customers that I would caretake while Stan was off work. My sales training consisted of meeting Stan’s customers, a run through the company brochure and being given the keys to my first company car, a 1984 white Ford Escort 1.4L.  I thought that car was great!

My shy nature was put to the test though when Stan returned to work as I then had to go out and find my own customers.  It’s an aspect of the job that I now find easy, what is known as ‘cold calling’, but back then, sitting outside of a company and getting up the nerve to walk in and ask to see the site engineer was a real trial.

My first ever cold call took me three attempts to get out of the car and actually go in.  It was awful and I was miserable for nearly all of my first year in sales.  It clearly showed too because a Sales Engineer from one of our suppliers, a company called Simplex GE, took my boss aside and apparently said something along the lines of “Unless you get Stuart some proper sales training, you will lose him”. I suddenly found myself booked onto a training course at the Coventry Novotel.  The experience was good for me as I soon found that I was not alone in my feelings of not knowing what I was doing. 

It was however the first time that I had to do any public speaking.  I genuinely wanted to throw up before I went on.  As I had mentioned to someone that this was the year that I was getting married, my fellow trainee tried to comfort me by suggesting that it would be good practice for my wedding speech and it would make that easier.  It didn’t help, I wanted to throw up then too!

The training did help and I stuck with engineering sales.  After a while you learn the real secret of selling.  It’s not learning 20 ways to close a deal or how to sell fridges in the arctic.  You just need to be honest, be natural, know your product or service features and benefits to the smallest detail, know your competitors as well as possible and finally only promise what your company can deliver and make sure that your company delivers what you promised.

An older and fatter me in action about 4 years ago.

Just be yourself, well the business version of yourself, and never, ever behave like the people that you see on TV’s ‘The Apprentice’!

So, here I am after a sales career of over 35 years.  I can go into any room and be comfortable talking to anyone.  By the time that I retired I could talk about any of my last employer’s products with ease and make most of them work too.  I was also happy to present to large groups of people at the drop of a hat, well, ‘Sales Stu’ can but underneath the bravado, ‘Shy Stu’ still lurks.

I’ve always tried to be nice to anyone that I’ve met.  I try to be patient and open minded as well as being creative. Whilst I am far from being a perfect person I’m OK with who I have become and the prospect of my personality changing is a genuine worry for me.

I have recovered very quickly from the operation to remove my Meningioma, a lot quicker than many of my fellow ‘Tumour Warriors’ who I chat to on the Facebook group and with no major after effects.  This I put down to the fact that my Meningioma was on my spinal cord and not actually in my brain, so apart from the actual operation site having to heal, the operation did not involve my brain.

I am fully expecting a much longer recovery after the craniotomy to remove Gary the Glioma, as the procedure will involve the removal of brain tissue in order to remove Gary as he is entwined with my healthy brain cells and this is what could cause the changes in me.

Honestly, It’s my brain tumour talking!

I have read of people losing the filter between their brains and their mouth and I have visions of that happening to me both good and bad. Me shouting “nice bum” or “you fat git” can both result in me getting a black eye and I also dreamt that I had developed the flatulence equivalent of Tourette’s.

On a serious note, will I still be my usual happy go lucky stoic self?  Will I still like the same things that I have always liked such as music, movies & TV shows? Will I still share the same passions as my family. It has made me think about just what exactly is it that defines who we are?  Is it our memories, our life experiences or our upbringing? 

I have spent a lot of time thinking about this and whatever the answer, the fact is that you are your brain and having any of it removed must surely have an effect.

I’ve read that the key effects of where in the brain my operation is happening can be:

  • Short term memory loss
  • Personality Changes
  • Loss of behavioural filter
  • Loss of creativity 

The memory issue just requires a work around, the personality change we can overcome and whilst the loss of creativity would be a blow, what I have come to realise is that none of these matter as long as I am well enough after my recovery to spend time with my family for as long as possible……..oh, and don’t get ‘Flatulence Tourettes’!

Stu xxx

https://www.thebraintumourcharity.org/

The Brain Tumour charity has been a great help to me since my diagnosis. They have a podcast which is always of interest to people with tumours and their families and also have the ‘Brian App’ ( yep that is spelt correctly, it is ‘Brian’) which offers advice and the ability to track your symptoms, appointments and treatments.

The ‘T’ Word Part 6 – Operation Day

Marty the Meningioma – Parting is such sweet sorrow.

Hi all.

I wanted to share a brief summary of my time in hospital, in the hope that it helps remove the worrying unknowns about operation day and also to try and change your mind towards the hospital environment itself.  Knowledge of what to expect from friends on the Brain Tumour Charity Facebook page, plus my own personal experience of my wife spending her career working in the NHS certainly helped me.

And it’s all systems go

I had a busy weekend on the run up to my operation because of my second tumour. On the Saturday I went to a small hospital in Otley for a final PCR test, following which I was to isolate. However, my Neurosurgeon for my Glioma, Mr Mathew wanted an updated scan to ensure that Gary the Glioma was being a good boy, so despite isolating, on the Sunday I attended an external MRI scanning unit based at Leeds St James Hospital but apparently run by a private contractor. The unit was immaculate and the staff super-efficient and friendly so I was not there for long at all.

Monday was my last day of normality in some respects, so I slowly packed my bag with essentials such as chocolate Hob Nobs, Pringles, Whittaker’s chocolate from New Zealand and a Baby Yoda hot water bottle, provided by my kids (sadly bag size limits meant that Baby Yoda couldn’t come with me in the end), oh yes, I took some clothes and toiletries too!

I was quite emotionally drained by Monday night but also keen to ‘get this done’.

My admission time at the Leeds General Infirmary was not until 12pm due to some audit that was happening but it meant that by getting up just after 5am I had time for one last big coffee and some toast before my fasting period started, although these days you can at least drink water until 2 hours before the operation.

The admissions ward is still strict on visitors so I had to say goodbye to my wife at the door and I will not pretend that this was easy, in fact I had kept really calm through most of this but saying goodbye upset me and in the end, I had to go off quite quickly.  Once that was done though, I pulled myself together and got on with being Mr Cheerful.  The admission team were great, friendly, calming but direct in that even at this point they did not have a definite ICU bed for me.

Thankfully it was only a short wait before confirmation came through of the bed and then it was ‘game on’. Lots of forms to go through, questions about health etc. but that was soon done.  I then had a steady stream of visitors starting with Mr Sheikh, my Neurosurgeon for the operation who was clearly delighted that we had a go.  After a brief chat he headed off to make final preparations on the theatre.  Due to my surgery being quite complex, Mr Sheikh was working with a second Neurosurgeon and he popped along to get up to speed and do a quick assessment of my physical state and then he too headed off to the theatre.

Finally, my Anaesthetist paid a visit, he was very good at explaining what I was to expect from being anaesthetised, what pain I might be in after the operation depending on what position I would be kept in for 5 hours (even giving me some practical demonstrations!) and then doing the final sign off.  Really great support, they went to great lengths to make sure I knew everything that I needed.

I’m not sure how much longer I waited, not long, before the admissions nurses kitted me out with a couple of gowns for the trip to theatre, locked my bag away for transfer to the ICU ward and then sat me back down to wait for the Nurse who was to take me to theatre.  They were really good at reminding me to keep messaging my family until the last minute, even encouraging me to call my wife right up to heading to theatre.

Theatre is ready

So off we went, me feeling like my bum was on display to all at LGI (it wasn’t) and I entered an almost euphoric state that this was it, the beginning of the end for Marty the Meningioma.  As we arrived at the room where my anaesthetics would be done the nurse and I were laughing about me being attention seeking having two tumours, so I arrived chuckling into the room.

I received a big friendly “hello again Mr Hannah” from my Anaesthetist who then took the time to introduce his team. “Just hop on the bed, relax and leave the hard work to us” he said as his team went into action putting in several cannulas, one in each hand and one at my ankle.  I was then connected up to two machines, the first of which would essentially make me relax.  “OK Mr Hannah, I’m going to begin the main anaesthesia now, it should only take a moment before………..” Gone!

Recovery and ICU

For me it was instantaneous but for my family it was 5 hours of stress and waiting, your family definitely has the tough job from the moment that you go under!  When I first woke up, I apparently couldn’t recognise Mr Sheikh or my ICU nurse and I have vague memories of my weedy voice answering them followed by me being violently sick! I then passed out again for a while.  When I next woke, I felt OK, burnt out but OK, quite cheerful in fact.  This time I did recognise Mr Sheikh, who had just spoken to my family and let me know that they were fine too.  With that I dozed off into a deep sleep.

Anyone who has stayed in hospital knows that good sleep is not normally on the agenda, with regular observations being done (blood pressure etc.) but that’s the norm. Also, sleep is difficult when you have an enormous bandage on your head, with what I believe were strategically placed knots to keep me from sleeping on my operation site, this could be co-incidence but it worked. I spent a day on ICU being very closely monitored and initially had a feeding tube (which was put in when I was under) in case my swallow function had been affected, this meant…..no food and worse, no coffee. Luckily, the specialist for this came along quite early on my first day to carry out the swallow test.

She carefully set out a glass of water, a tiny tub of custard and a packet of digestive biscuits, with my challenge being to test small bits to see how swallowing went.  She carefully broke off a crescent of biscuit; I think with the idea that I nibble delicately along this strip and try swallowing but I must have been hungry because it went in and down in one!  “OK” she said after a short pause and a chuckle, “not quite what I had in mind but you passed”.  She left me the custard as a reward and a few minutes later I was tube free and supping a coffee and dunking the remaining biscuits….bliss.

HDU and Phantom Poo

Later I had a CT scan and the results looked great, in fact they are pretty sure that they got 100% of Marty out.  This meant that I could transfer to the High Dependency Unit, a ward where you are still looked after closely but it is no longer one to one care as it is on ICU.  I soon settled in there and was reunited with my bag and phone so I could finally talk to my wife and family. 

My night on HDU was a mixed bag. I didn’t expect to sleep and didn’t.  I was feeling very weak and mentally fatigued with the after effect of the anaesthetic and think I was hallucinating slightly because in the middle of the night I became convinced and fixated on the belief that I had actually soiled myself! Eventually I could resist no more and pressed the nurse call button.  The duty sister came over and could tell that I was a bit confused and distressed but after a quick check assured me that I was fine.  They really do not get paid enough, do they?

The next day I felt great if I’m honest and spent the day resting of course but I felt up to sitting out of the bed and even having a very careful shower.  That was an event in itself as the shower room is in the nurse office so that they can hear and react quickly to what is going on I suppose, but as they would not lock the door for safety, it meant that this two-way door would not need much to push it open.  I sat for my shower but had a close call getting out when; covered in soap suds, I lost my balance.  I reckon that if I hadn’t caught myself, the suds would have let me slide naked through the door, across the office and gently come to rest at the HDU sister’s feet like a mottled pink beached whale and they definitely do NOT get paid enough to see that!!

Also, by now I was eating and I like hospital food if I’m truthful.  It’s probably the same as with in flight catering, you enjoy it simply because its something to do, but I did have a cracking chilli con carne!

An Unexpected Journey

The following morning, I was up again and was waiting to have a coffee with my wife and eldest daughter, Rebecca.  Although there were no visitors allowed on the ward, I was allowed to go off the ward to meet them, so we were going to meet up, however my duty nurse came over and let me know that they were thinking of letting me go home.  Apparently, I was so bright and cheerful and my observations so consistent that it was looking like I didn’t need to occupy even a standard ward bed (my next destination according to the plan) so a series of visits began.

A physiotherapist took me for a walk and was happy that with a stick I was mobile enough.  An occupational health specialist then took me for another walk and got me to make her a coffee, which we sat and chatted over (cushy job she has!) and she then did some cognitive tests which apart from the mental arithmetic (which I couldn’t do before the op anyway) I passed easily.

Finally, the wonderful Mr Sheikh reappeared and said that he was happy for me to go home too, so my wife got a very unexpected call to say “come and fetch me”.

In total I was only in for 48 hours, which was great and I am aware that I was very fortunate, however my experience was a good one, made possible by dedicated and patient people, who were completely focussed on looking after us.  I don’t just mean the Surgeons, Nurses, Radiographers etc.  but the catering staff who were always cheerful and friendly, the ward cleaner who even though busy spared a moment to say hi and wish me well.  All these people come together to get us through what is likely the darkest time in our lives and to get us out the other side as well as is possible.

Hospitals and Happiness

Just to finish, I know from chatting on the Tumour Charity Facebook group, a lot of people are frightened by the unknown of the hospital, and see it as this awful place where this scary thing is going to happen to them.

My wife has worked in the NHS her whole career right up to her retirement, it was her second home and she does miss it, she wouldn’t feel like that if hospitals were awful. Our eldest daughter is a scientist based at Addenbrookes in Cambridge, she loves her job and like my wife just sees the hospital as a workplace not somewhere to fear.

My advice is to try and see it from the staff point of view, it’s their office, it’s where their friends are who they have a laugh with every day, where they organise their birthday parties and have cake on their friends’ birthdays.  It’s where they comfort their friends on down days and screech with laughter at stupid selfies and inappropriate jokes. It is somewhere that is friendly and familiar not a house of horror.  They see the hospital as a positive place dedicated to being there for us in our darkest hours. 

I hope this helps to take away some of the mystery of what is to come on your operation day and to make the idea of hospital less threatening.

Stu x

The Brain Tumour charity has been a great help to me since my diagnosis. They have a podcast which is always of interest to people with tumours and their families and also have the ‘Brian App’ ( yep that is spelt correctly, it is ‘Brian’) which offers advice and the ability to track your symptoms, appointments and treatments.

My Brainstem Playlist.

Since my diagnosis I have found myself looking at life differently including reflecting on my past life. Music has always been important to me so I decided to put together a playlist that includes songs that I love, songs that remind me of places and times in my life, and tracks that I have discovered more recently that help me to keep positive. I hope it’s something that you might enjoy too and always play in ‘Shuffle’ mode.

The ‘T’ Word Part 5 – It’s Time To Talk About God.

Anyone who knows me well will be aware that I am an Atheist,

but this has not always been the case.  These days I try to understand life through the lens of science, but at one point in my life I was such a devout believer that I seriously considered becoming a priest and dedicating my life to God.

I suppose that my journey into Christianity began as a small boy.  We were not a very religious family but I know that my Mum has always had her faith.  Apart from weddings & funerals, I don’t recall my Dad ever going to church but my sisters and I were sent to Sunday school to learn about God & Jesus.

When we moved to the village of Countesthorpe in 1969 I went to what was then called ‘Linden Junior’, a Church of England school, which meant that religion was very much part of the teaching. Each day we would all sit cross legged on the floor of the main hall and listen to bible readings and we would sing hymns with slightly dodgy lyrics about spreading our seeds and purple headed mountains, although the ‘double entendre’ was lost on me back then!

Greenfield Primary School Countesthorpe (Formerly Linden Junior School)

Religious studies suffered the same fate as every other subject, a complete lack of interest on my part.

One memorable parents evening (well memorable for my Mum & Dad!), my parents had to listen to my exasperated teacher announce “the problem is that Stuart is bone idle, just bone idle” and she was correct….oops! 

Eventually I moved up to Countesthorpe’s newly built ‘Leysland High School’ (very recently demolished after a tragically short life for a school in my opinion) and religious studies became optional and I of course immediately opted out.

The Now Demolished Leysland High School, Countesthorpe

As a lad who had just turned into a teenager, my interests switched firmly to the opposite sex!  I was never really one of the ‘cool kids’ so I employed laughter to try and attract girls, becoming the class clown, performing my Alvin Stardust impersonations on the desks (you may have to Google him) and pretending that I had a group of performing flea’s in a matchbox…..hey, it worked, don’t knock it!

A few years passed with no religion in my life apart from my Dad’s regular use of the word ‘Christ’ whenever he was trying to do a job around the house or car and it wasn’t going to plan, so basically, every time he did a job. I’m sure by this point in my story it will come as no surprise that what lead me back to the church was…..yup, chasing girls.

My great friend Andy announced that his Dad was involved in setting up a village youth club.

It sounded awesome; games, parties and girls! The catch? You had to go to church. A small price to pay in my mind.  So I started to meet Andy and head to church for the 10:00am family service.  This meant that I could also now go to the youth club each week to find my next ex-girlfriend.

As an aside, can I take the opportunity to apologise to all of the girls who had the misfortune to be my girlfriend at this point in my life.  The biggest ‘cop out’ line that lads use is “ it’s not you, it’s me” but I can assure you that it really was me, you were all sweet, kind and pretty and I was a typically selfish, hormone fuelled teenager…well, ‘git’, to be frank!

Eventually, after a few months of going to church, not only was I becoming increasingly involved in the church community but I was finding myself drawn to the teachings of Jesus.  I have never believed that the bible was the literal word of God as most of the events depicted and written about in the bible supposedly happened decades before. Rather I saw them as allegorical, a way of passing on the message of Christianity in an easy-to-understand way at a period in history where most of the world’s population was illiterate.

Regardless, these stories and the way our Vicar used them had a profound impact on me and I wanted to know more.  The opportunity to be confirmed came along and I really enjoyed the classes that lead up to my confirmation.  The first time that I took Holy Communion was very moving.

Around this time, I started to become increasingly involved with working backstage at ‘The Little Theatre’ in Leicester in part due to passing my driving test.

Through a combination of my church activities and the theatre, I was asked if I would be one of two ‘Follow Spot’ operators on a production of ‘Joseph and His Amazing Technicolour Dream Coat’ which was to be performed inside Leicester Cathedral. When I arrived for the technical rehearsal, there were two very high scaffold towers built for the ‘Follow Spots’ and when on the platform on the top of the towers you could touch the Cathedral roof, they were very high towers! Talk about getting closer to God!

Inside Leicester Cathedral

Mounted on each tower platform was an enormous ‘Super Trouper’ follow spot (yes like in the Abba song) which had been hired for the show. For most of the show everything was fine but when the pharaoh character does his ‘Elvis’ style rock song, we were asked to wave the Follow Spots around like search lights.  You will have to take my word for it when I tell you that a ‘Super Trouper’ creates a lot of swaying on a scaffold tower if you are dumb enough to wave it violently around and I really felt like I had a guardian angel to stop it all crashing down.  Oh yes, I also got myself my next ex-girlfriend whilst working on Joseph.

A 1970’s Super Trouper Follow Spot

My time was now split between the theatre and church (I maybe should have allocated a little time for my ‘O’ level revision too) so I was a busy boy.  I loved Countesthorpe St Andrews which at that time still had its traditional pews, a lovely classic interior and Anglo-Saxon exterior. Our Vicar was a lovely chap called Brian Davies and he had an aptitude for engaging with young people and making the church relevant. I still remember the warm, comforting and happy feeling that I always experienced when in that church. It had an amazing community and some of the special events like Easter and Midnight Mass at Christmas were just fantastic. The feeling of belonging was very powerful and I genuinely felt that God would dominate my life.

St Andrew’s Church, Countesthorpe

A Negative Revelation.

In the late 1970’s a series of famines in Africa began to make the news, culminating a few years later with ‘Live Aid’.  I watched with increasing sadness at the images of starving people, their spirits broken, cradling dead babies, they looked confused and frightened, trying to make sense of the horror.  Aid agencies struggled to feed these people, whilst the leaders of these countries continued to live in luxury with the wealth stolen from their population.

Being a Christian, I of course prayed for these people, prayed for them to get help and be saved, but as weeks turned into months my prayers turned into questions.  Why was God letting these innocent men, women and children suffer?  Why was he allowing their greedy leaders to continue to thrive off of the misery of others?

I asked questions but got no answers.

Then one Sunday I was kneeling to pray but I couldn’t bring myself to close my eyes.  I didn’t pray and worst of all I felt spiritually dead inside.  The church suddenly felt alien and the words of our Vicar felt hollow.  I fought these feelings for a while but eventually I knew that my faith was gone.

I explained how I felt to my parents who were saddened but understanding and I switched my attention completely to the theatre and dropped out of church life entirely.  I discovered later that our Vicar had come to see my parents to see if I could be brought back into the church family but eventually my Mum and Dad were able to convince him that my decision was final.

Like my father, apart from weddings (including my own) funerals and christenings, I didn’t return to church and I certainly didn’t pray.

Whilst I found frustration in the concept of an all-powerful god that would take no action to help people, I found comfort in the randomness of a science-based universe in which perfectly good people could be subjected to perfectly awful things for no greater reason than ‘shit happens’, and that life was cruel or kind completely at random.

Facing mortality

I’ve come to realise that many people who find themselves in the same position as me, where you are faced with your mortality, either find God for the first time or return to their faith.  This has not happened to me; I have put my faith and trust in medical science to get me through this.

It might then come as a surprise that unlike many of my fellow atheists, I do not get annoyed when people tell me that they are praying for me. If someone who genuinely believes in God, cares about me enough to ask god to look after me and keep me safe, I see that as an act of love and deep friendship, and I get a lot of strength from this.

And what of Jesus?

So, if I no longer believe in God, have I turned my back completely on Jesus? Well, no actually.  I no longer believe he was the son of God as portrayed in the bible, but I do believe that he existed, or at least that he is based on a real person. I think he was a man who grew up to believe that it was his duty, his calling, to fight for social justice for the poor and powerless. Like many who have done the same in the centuries since, he fought so hard and with such passion that he became a threat to the wealthy and powerful and paid with his life.  He was silenced but became an inspiration to others to continue that fight. He died on that cross, not for our sins, but for justice, kindness and love and in this regard, his teachings are as relevant today as they ever were, if not more so.

Without faith, how do you face death?

If I don’t believe in God and an afterlife or heaven, how do I look at the prospect of death?

I believe in the scientific explanation that all of the matter that exists in the universe was created in the ‘Big Bang’ and since matter can only be transformed and not destroyed, we and everything around us are made from matter created in that event.

The physical matter that is me existed before I did as a self-aware entity.  I was unaware of anything before it all became me and when I die, I will go back to where I was before, unaware.  I may cease to exist as a single entity but all of the matter that I am made from will carry on, changed but still around.

If I am correct then when I pass on, I will drift off into the long sleep of oblivion.

But what if I am wrong?

If I am wrong then when I die, I will be re-united with all of my family and friends that went before me and I will be happy because I will know that someday, I will see the friends and family that I have left behind, and that’s not a bad way to lose an argument, is it?

Not bad at all!

Stu x

The Brain Tumour charity has been a great help to me since my diagnosis. They have a podcast which is always of interest to people with tumours and their families and also have the ‘Brian App’ ( yep that is spelt correctly, it is ‘Brian’) which offers advice and the ability to track your symptoms, appointments and treatments.

My Brainstem Playlist.

Since my diagnosis I have found myself looking at life differently including reflecting on my past life. Music has always been important to me so I decided to put together a playlist that includes songs that I love, songs that remind me of places and times in my life, and tracks that I have discovered more recently that help me to keep positive. I hope it’s something that you might enjoy too and always play in ‘Shuffle’ mode.