We all know that we change over time. When I look back at my teen years I cringe really. I was a typical hormone fuelled and self centred teenage male. How I ever gained and kept a girlfriend is beyond me! It certainly wasn’t my dress sense, style or coolness. I was never in the ‘cool kid gang’, My friends were kind and made me laugh, that was the prerequisite for being a friend of mine, not coolness or being in the right group. We never got any satisfaction by picking on people, we had more fun including those sort of people into our friend group.
When I think about my teenage self and my girlfriends, I want to go back in time and give myself a slap. Now I am the father of two daughters, I realise how much hurt they would have felt at my casual loss of interest and just suddenly disappearing off of the scene, bastard. I think back to the girls who were my girlfriends and I think how could I have been so selfish and mean to them. Bloody teenage boys.
As I got older I have always made treating people decently as my priority, even at the cost of my career on occasion but despite this when my wife and I first moved in together I was still suffering from lazy Mummy’s boy syndrome, and had to undergo some personality and habit correction therapy to stop me being lazy and expecting to be waited on hand and foot.
Following this therapy I learned to cook and clean. My one attempt at using the washing machine ended in some unplanned colour changes so I was banned from using the washing machine (Phew, that was close but I didn’t do it on purpose).
So I live my life now trying to be considerate to others and to be aware of what is going on around me…..however…..
As I write, I am seven weeks post operation and my family think that they have noticed some changes in me following my craniotomy. I was warned that my short term memory might be affected but the operation has had an unexpected consequence.
A few weeks ago my Mum in law passed away. We have lived with her for two years since retiring and of course I have known her since meeting my wife who I met 41 years ago. I considered us close and yet I was unable to cry or even mourn properly. I felt that I needed to but something stopped me, as if I had lost the ability to be upset or at the very least lost the ability to empathise.
It’s not a nice feeling and on occasions I feel an almost tangible numbness in my brain where I should be feeling upset or sad. I have had the privilege of being with both my Mum in Law and my Father in Law at the end. I sobbed like a baby when my Father in Law passed and felt a terrible sense of pain and loss. I didn’t think any less of Mum in Law and yet I couldn’t cry. Of course I felt sad but there was something blocking my ability to show my emotions. My wife said that at the end, I seemed distant from the situation while I thought that I was very much ‘in the room’. I guess she meant that I wasn’t as upset as she would have expected.
I am now trying to be aware of situations and my reaction to them. It feels a little like having your head stuffed with cotton wool, a fluffy, fuzzy lump of nothingness where my emotions used to be. Will it ever change? I don’t know and have not read anything about if recovery from this kind of effect is possible. Can my brain rewire itself, I hope so.
I have been back in the Leeds Royal Infirmary as my operation site had become slightly infected and I was suffering with really bad head pain. After a few days care back on Ward L25 I’m all sorted again.
If you need your faith in humanity restored, a stay under the care of the NHS will do it. The team here in Leeds are amazing, professional, fun, friendly and caring. Even at stupid o’clock in the morning
Just waiting to be discharged and head home. This part always seems to take so long.
I’m too buzzing from the elation of my operation being done and being able to come home to sleep so I wanted to get my post op thoughts recorded in the hope that it might help me to drift off to sleep!
It’s not always easy to get your recovery sleep in as the snores and other assorted low frequency noises rumble around the ward like thunder on the African savanna! I
t can be a little bit like those BBC wildlife documentarys about Africa in the dark, complete with little animal howls of men pain! The observations tablets computer screens provide an authentic blue light like a bright African full moon.
Well after a rethink, I have launched the podcast again. No Spotify playlist integration, just an old school relaxed chat about living with a brain tumour diagnosis.
If you would like to hear it, the new episode is available on Spotify and Amazon Music and sometime tomorrow will be on Apple and Google podcasts. just search on the podcast app for ‘The Brain Tuner’.
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.Â
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.
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.
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!
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.
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.
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?
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.
www.stuarthannah.com 