The ‘T’ Word Part 7 – Positivity in the hardest times.

Photo by Tara Winstead on Pexels.com

Hi All.

Quite a few people on the Brain Tumour Charity Facebook group have asked me how I have been so cheerful through the whole journey from diagnosis to recovery of my brain tumours; so I thought I would share how I approached the situation. I think most people on the group have benefited from the thoughts and advice of fellow ‘Warriors’ (as we call ourselves) and I hope my experience might help someone whatever situation you find yourself in.

At the risk of a collective groan, what helped my family and I was discovering ‘Stoicism’ or more accurately being led to it by our eldest daughter, Rebecca.

I would describe Stoicism’s philosophy as “bad stuff happens, how are you going to handle it? As a victim of circumstances or master of your destiny?”. Very much my words not the Stoics but I think it sums it up for me.

In essence Stoics don’t focus on what they cannot change, that’s where frustration and sadness come from. They turn the negative around by finding something no matter how small in the circumstances that they can control, giving a sense of being in control, whilst accepting that we cannot control everything. You can only control how you react to events.

The key thing is ‘Gratitude’, gratitude for the wins, no matter how small.

In the case of brain tumour sufferers and our collective situations; we none of us deserve, caused or wanted our tumours, but here they are. That’s the bit we can’t control but how we approach the journey ahead is in our control. We can and will weep but then we need to sit back and think OK, what about this can I improve, what can I not change.

The things you cannot change become in a way irrelevant as you will be along for the ride with them. 

Once we figure out what we can affect, that is our ‘must do’ list and from where we derive our gratitude and “you can hurt me but never beat me” attitude.  For those amongst us who know that physically the tumours will shorten their lives, the focus is to deny the enemy victory over your mind, to find joy in the life you have and the life that you’ve had and not dwell on the end. If your life is already being stolen by your tumour don’t reward it by giving it more of your precious time!

I love this quote from Dr. Suess;

“Don’t cry Because it’s over, SMILE because it happened”

Lots of us are left dealing with punishing symptoms even after the tumour has gone or been reduced, like my Glioma, which can never be fully removed, so every day carries the risk of being the day it fights back. Through Stoic thinking though, I refuse to give any control to my tumour. If it fights, I fight, but I am not giving up a single second of my precious time to my tumour until I need to act.

Let’s say you came into this a runner like me but afterwards you find you cannot run but you loved being out and about, you loved your freedom.

A stoic will think

‘OK, I can’t run, can I change this? No.

Can I walk far? No.

Right I’m getting a mobility scooter!

OK, I confess, this is me. As it happens there is now no reason that I will not be able to run again but not for a long while and I have been advised that walking any distance will be a long way off but I refused to miss out. £300 later I have a used bright red mobility scooter with alloy wheels!

It makes me laugh that I have it, smile that I bought it and excited because as I write I can barely make the front door, but the scooter is at the front door which means that I can go 10 miles through the beautiful Harrogate scenery. Or I could sit at home and sulk about running….no thanks.

My last car was a beautiful big Kia plug-in hybrid Optima Sportswagon, big, sturdy with massive  wheels, but I don’t mourn for a machine, I laugh at the ludicrous contrast with the 4” alloy wheels on my scooter and its breath taking 4mph top speed, it is a regular source of giggles and joy!

So why did I need Stoicism?

Before my diagnosis we had moved in with my elderly mother-in-law who amongst other things has rapidly developing dementia. Life became extremely stressful, a depressing daily grind and on top of this, COVID19 happened and prevented us from being in New Zealand for the birth of our grandkids.

Some of you might have read my first ‘self-help’ (literally helping myself) blog which is called ‘Notes from a Care Home’ detailing some of the problems of living with Mum in law through humour. When my diagnosis came through my priorities changed of course.

It was stoic thinking that kept me going and really led to me blogging. I was going to try journaling but thought that if I shared my experience, someone else might be helped too.

Whatever I have to sacrifice to get the most time with my family is a win, and if I lose abilities along the way through no action on my part, they are small losses compared to the big win of life with my loved ones!

Stoicism has been around for about 2,000 years and was created by the Greeks and developed by the Romans. My introduction and ‘go to’ is a book by a guy called Ryan Holiday, called ‘The Daily Stoic’ and he also has a daily stoic podcast. The book has just one page for each day of the year with a quote from a famous Stoic and then a modern spin on the theme of it. It takes up almost no time each day, we are not talking about some big deal learning effort (although you might soon find that you want to know more) but builds you up in very tiny chunks.

My daughter bought us our copy and we in turn recently sent a copy to friends going through a family crisis and who are now using the book daily to help themselves through tough times.

It is a frustrating fantasy to think that we can control everything through sheer determination or willpower, the universe does not work that way. As individuals we cannot stop the random cruelty of our circumstances, but with Stoic thinking, it is a certainty that you can control how you think and react to these circumstances. How happy your life is, will be back in your hands.

I hope that this might help, it worked and continues to work for me and firmly cemented a ‘Glass Half Full’ mentality in me.

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 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.

The ‘T’ Word Part 4 – A Life Lived in Sharp Focus.

Photo by Karolina Grabowska on Pexels.com

I always prided myself on my navigation abilities.

I started my sales career well before the arrival of satellite navigation and so belong to the generation of sales people who carried a spectacular map collection in the boot of the car.  Any self-respecting rep’s set of maps included a gaggle of ordinance survey maps, A to Z Town maps and most importantly for ‘Road Warriors’, a ‘Little Chef’ map of the UK.

In the late 80’s, one of my sales managers loved ‘Little Chef’ restaurants so much that he issued all of his sales team with a copy of the map and he wouldn’t even bother to tell you what town you were meeting in for a day out together, he would just say “Meet you at number 208”.  No day out was the same unless it started with a ‘Little Chef’ Olympic feast breakfast and enough free refill coffee to keep you awake for a week.  Such a shame they are all gone now, mostly replaced by Greggs, McDonalds and KFC.

My equivalent of satnav back then was a list of sequential directions written in my own little shorthand on a notepad which was clipped to a suction mount holder stuck to my windscreen, and this served me well for many years.  Eventually though, I started to notice that I kept getting lost.  I couldn’t understand it, and it rapidly got worse.

The cause finally became evident in a moment of ‘butt-cheek clenching’ terror!

I was hurrying to an appointment just outside of Hemel Hempstead, in fact it was my first visit to Hemel. I came thrashing down a dual carriage way when at the last minute I saw this strange road sign which was a large circle with six smaller circles around it.  However, I saw it so late that by the time I worked out that it was a huge roundabout, I was seconds from ploughing through the middle of it, which would likely have resulted in collapsed front wheels and a large skid-mark in the centre of the roundabout along with my underpants!

OLYMPUS DIGITAL CAMERA

As I came to a halt (and watched a cloud of my tyre smoke drift past) I looked around completely confused by this monster of a roundabout and why I had not seen the sign until the last moment.

I must have circled the entire thing four times before finding the road that I needed, and arrived at the customers late and stressed, but at least I realised that the reason for my navigation problems was my eyesight.  I was almost passing signs before I could read them!

I decided to get my sight checked and so booked myself an eye test. At the opticians I went through all of the usual checks, and with the test done, the optician sat and considered his notes for a moment before announcing with a chuckle “Well Mr Hannah, when corrected, you have great eyesight, but you wouldn’t get me in a car with you without glasses”,

I duly parted with a stack of cash and drove very carefully until my glasses were ready to collect.

The day of collection finally arrived and the optician fitted my new glasses and held up a mirror for me to inspect them.  This proved to be a bit disappointing as I had hoped to see a kind of Michael Cain sophistication reflected in the mirror but my reflection looked exactly like Scott Adams’ cartoon character ‘Dilbert’.

Dilbert
Me

Anyway, because of that, I left the opticians with the glasses still in their case in my pocket.  I was wandering through Argos in Leicester (using it as a short cut to the car park) when I decided to put them on.  Big mistake, the world snapped into such sharp focus that I actually lost my balance and started staggering around.

I found the level of visual detail overwhelming, a new clarity of vision.

Same glasses, a new perspective

Photo by Pixabay on Pexels.com

I experienced another moment of clarity of vision the morning after my diagnosis.

As shocking as the news had been, I actually slept really well the night after the doctor’s call. I woke before my wife, so made myself a coffee and sat, looking out of our holiday home patio doors at our deck and the woodland around us.

Everything seemed different, with colours more intense and I felt like I could see more detail than the day before. Looking back, I can only think that subconsciously I was not sure how much longer I would see these things.

I’m normally quite a noisy person, liking music over silence but this morning, I just sat and listened to the soundtrack of the world around me.  The wind was blowing the trees around and was accompanied by the gentle rumble of traffic on the nearby A1. As the mornings were getting darker, I could still see the lights of traffic on the A59, queuing to join it.

Normal people, having a normal morning.  Some would no doubt be grumbling about the traffic, others singing along to the radio and at least one rear view mirror being used to fix makeup!  A normal day, will I ever have one again?

What I realise now is that I am taking in the sights and sounds around me in more depth, almost gorging on these sensory experiences as if trying suddenly to get a greater appreciation of the special nature of ordinary things. As we have travelled around Yorkshire since the diagnosis, I find myself trying to take in every view with as much detail as possible, however the beautiful countryside and the classic architecture of Harrogate just add to my sudden sense of impermanence.

Most of the buildings and all of the countryside existed before me and will be around long after I have gone.

I find that even the most mundane of things can trigger a moment of melancholy at how the ordinary events of the world will carry on without me.  So now I see everything in a new and special way, ‘Life in HD’ you could say.

After a diagnosis like mine, the clutter and trivia of life is cleared away and you are left with only clarity & truth.

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 it in ‘Shuffle’ mode.

The ‘T’ Word Part 3 – Our First Christmas Together.

Photo by freestocks.org on Pexels.com

Christmas Past

Everyone’s memories of Christmas day when they were young differ and of course it is difficult to know if time has altered your memories of the actual events.  I can however clearly remember how from around 1970, our Christmas day settled into a rigid routine. Honestly, for most of my life, our Christmas day was like the movie ‘Groundhog day’, it just repeated every year.

My sisters and I would of course wake early on Christmas morning and be buzzing with excitement but we had to learn self-control as all we were allowed to do when we got up was to sort our presents into our respective piles until our Dad had finished what he referred to as ‘his ablutions’ and gotten dressed. Christmas for us could only really start when he finally wandered down, by which point we were bouncing off of the walls!

Once we were told we could start, there followed a frenzy of unwrapping, with piles of torn wrapping paper, thrown everywhere, accompanied by lots of excited “thank you”.  Back in the late 1960’s and early 1970’s Mum and Dad didn’t earn a great deal, but they would always try to get us what we wanted, even if it meant them going without, something that I only came to realise in recent years and as hard as my dad could be to live with, I know that he loved us and I am grateful for what I had.

It has become a habit for people to say “oh kids have more fun with the packaging than the toy”, well maybe that is true of some kids but I can tell you that this is not the case when you have just unwrapped a 10” toy Thunderbird 2!

Once the chaos of present unwrapping had subsided Dad would head off to collect our Nan while Mum would begin cooking the Christmas dinner.  She never told us at the time but I’m pretty sure this wasn’t the highlight of her day. Dad would arrive home with his Mum and settle her in front of our TV, which is where she would stay for the whole day apart from when eating dinner.

Then would begin the ‘Sherry Ritual’.  This was the annual argument over what she wanted to drink and went as follows:

Dad: “Mum, would you like a sherry?”

Nan: “Yes please”

Dad: “We have Gin and Tonic as well”

Nan: “Oh well, that would be nice too”

Dad: “So which DO you want”?

Nan: “Either”

Dad: “Oh for Gods sake make up your mind”

Nan: “Sherry”

It always ended with Sherry but still this ritual took place every time!

As soon as Nan was finally settled with her bloody Sherry, Dad would take this as his cue to head off to the Railway Pub in Countesthorpe (conveniently about 200 feet from our first home in the village) to join his mates, all of whom had left at home their long-suffering wives, stuck with unwelcome relatives, uncooked Turkeys and unhelpful children.

Dad would eventually arrive home, shall we say ‘Relaxed out of his face’ for his Christmas dinner.  This had to be served at 14:15 as the pub closed at 14:00 and even Christmas dinner was not allowed to cut into ‘pub time’.  I can’t honestly remember how many pints of beer dad would get through on Christmas day, but you could definitely describe him as ‘mellow’ when he got back.  This usually ensured that the dinner would go smoothly, apart from the year that he managed to knock a full glass of red wine over my Christmas dinner and we had to salvage one for me by everyone else donating parts of theirs.

Full of beer and Turkey, Dad would retire to his favourite chair and be asleep by the time that the opening credits of the Christmas day ‘Bond’ movie ended. As I am writing about the time before VCR’s and DVD’s it was years before I was able to watch a James Bond movie without the accompaniment of a constant and deafeningly loud ‘pig snort’!

By the time dad woke, thirsty and hungry again, it was time for Mum (who had to remain sober until one of us kids learnt to drive) to take my Nan home.  When Mum was back, we would settle down to watch whatever Christmas Special the BBC had on offer (usually Morcombe and Wise) and this was the most time that our family would ever usually spend together and this is probably only because the pub was closed so Dad had to stay at home.

And there you have it, year after year the same, yet I still have good memories of Christmas; kids can filter out the memories that they didn’t like, I guess.

Christmas Present.

Photo by Andrea Piacquadio on Pexels.com

For my tumours and I, this is our first official Christmas together and it would appear that Marty my Meningioma and Gary, my Glioma decided that they should celebrate this by giving me some gifts to go with the ones that they first gave me and led to their discovery in the first place. 

The first of these gifts is a gently worsening fatigue in my right arm and leg.  I have been using my running as my way of keeping my fitness up for my surgery, but even though I managed to run 5K parkruns on both Christmas morning and New Year’s Day morning, I am finding the effort required is definitely increasing.

I am also starting to lose sensation in other places now, most noticeably on the back of my head and on the fingertips of my left hand which are significant changes.  The tips of my fingers on the left hand feel as if they are frostbitten and my feet and hands on both sides of my body are colder than the rest of me.

Developing these new symptoms has finally triggered a sense of anxiety in me, which is really annoying as I have managed to be completely calm and upbeat until now.  Lying in bed at night, trying to clear your mind for sleep, they become more noticeable and my thoughts end up focussed on the evident fact that my illness is both progressive and progressing.  Somehow up until now I have been able to avoid facing that fact.

The sensitivity issue has however provided me with one of the funniest moments of recent months that I am sure I will chuckle about for a long time.

I was discussing with my wife, Andrea, the fact that I have almost completely lost feeling in another (rather important) part of my anatomy and I referred to it as ‘my old chap’. A few days later and my wife and I are sitting with one of the two Neurosurgeons that will carry out my operation and after discussing my various symptoms, he summarised and then asked me if I had any other symptoms that we had not yet talked about.

Me: “No I don’t think so”

Andrea: “What about your ‘Old Chap’?

Consultant: Blank Expression

Me: Err

Andrea: Gently turning red in the face!

At this point, under the pressure of the moment my mind blanked on the word ‘Genitals’ and I raced through a list of ultimately worse alternatives including; ‘Man Parts, Wedding Tackle, Meat and Two Veg and The Last Turkey in the Shop’ before finally blurting out “Down Below”!

Consultant: “Hmm OK”? Writes something down.  Please let it be true that this senior Neurosurgeon wrote down ‘Old Chap’?

Christmas Future

I’m really hoping to get my operation date for Marty very soon after I write this, for an operation in January 2022, that is something that will help with my anxiety.  Once my second operation of the year to get Gary out is done (well as much of him as possible) I am desperately hoping to be well enough to spend Christmas 2022 in New Zealand and finally meet our twin Grandchildren.

I have to face the fact that although surgery and treatment can reduce both Marty and Gary, it can never completely get rid of them, so we will be spending every Christmas that I have left with them in the background and if I live long enough, Gary will get me in the end. However, if I can manage 15 to 20 more years, then I will have done well and if Gary is not due to get me in that timescale, then as a man, it’s quite probable that something else will take me out anyway based on the law of averages, so I’m not going to worry too much about ‘Prognosis and Timescales’ so long as when Pathology takes a look at Gary, he turns out to be benign as expected.

I hope you all had a great Christmas and wish a happy new year for you in 2022, and if you are one of the tumour gang, may all your test results be good news!

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.

If you can spare even a couple of quid, it would make a big difference to the charity and the people like me that they support.

Home


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.

The ‘T’ Word Part 2 – My First Neurosurgeon Appointment – Now it feels real!

Fortunately, hospitals don’t scare me.

In fact they are familiar ground as although I have never been a health worker, I met my wife, Andrea, when I was aged 20, just as she finished her last year at the Leicester Royal Infirmary School of Radiography. So, for our entire time together, apart from when our children were babies, she has worked in the NHS as a Radiographer.

Back in the early 1980’s hospital security and access were much more relaxed than in these days of COVID19 and terrorism.  Due to this I was able to have the opportunity to keep Andrea company on lonely night shifts. I even spent a Christmas Eve night shift with her, sitting in the High Wycombe General Hospital X-Ray department.  I became quite efficient at reloading film cartridges and I clearly remember watching the dawn break on Christmas morning through the window of the X-Ray department, listening to the gentle hum of the film processors.

One occasion that sticks with me was when one day, after work, I was sitting in the film processing room waiting for Andrea to finish work. I was a smartly dressed, fresh faced young salesman, sitting with my open briefcase on my knee doing some paperwork.  Into the room came two equally fresh-faced young doctors who stuck an X-Ray image of someone’s leg up on a lightbox and began debating if it was broken.

I guess that because of the way I was dressed and the fact of where I was sitting, they thought that I was another junior doctor, so they turned to me and asked if I agreed that indeed it was broken.  For reasons that I still cannot explain, instead of saying “I’m not a doctor”, I blurted out…….”Yes!”

So if you are reading this and spent weeks in plaster unnecessarily in 1983…..You have my heartfelt apology!

The only time that I have been in hospital myself was after returning from New Zealand in 2017.  On my first day back at work I was taken ill with what I later found were called rigors, with my teeth banging together and uncontrollable shivering. The first doctor that I saw was quite dismissive until discovering that on our way back from NZ, we had a 16-hour stopover in China.  Suddenly I found myself in Coventry hospital in strict isolation.

At first it was believed that I had Bird Flu (very nasty), later re-categorised as Rickettsial disease (very rare) & finally identified as Cellulitis (very treatable).  For a couple of days few people were able to visit, but eventually quarantine was eased, although fortunately I was allowed to keep my private room.

Once I started to feel better, I started to get regular visits from my consultant who was accompanied by some student doctors. Apparently, having patients with a tropical disease who feel well enough to talk was unusual, so she recruited me to help to train these student doctors by letting them question me about my illness but I was not to offer any information that they did not specifically ask for.  They would then make a diagnosis. I spent a happy afternoon with them.

The next day as I watched yet another repeat of ‘Top Gear’, the consultant arrived with another trainee doctor and asked if the doctor could practice a full health assessment as done on newly arriving patients and I was again glad to help and glad of the company.

I was so happy with the care that I received at Coventry Hospital that I left a big tin of chocolates on the nurse station desk as a small token of appreciation, and the experience cemented my respect for the NHS staff.

So, what about my upcoming hospital time? 

Well, I recently received a letter confirming that my tumours are to be treated at the Leeds General Infirmary and given a date to meet my neurosurgeon.  My wife immediately felt on home territory when we walked in, even though she has never worked at this hospital.

This was the first time that I really felt anxious since the first phone call telling me that I have tumours.  I think that discussing things with the surgeon somehow made me appreciate the enormity of my situation.

After a short wait we were called in and sat in front of my neurosurgeon’s desk which included an impressive multi monitor computer set up.  The screens showed various cross section scans of my fat head.  The surgeon introduced himself and explained that his speciality is Meningiomas and that a different surgeon would handle my Glioma.  He called up one particular image which showed a view down onto my spine and you can clearly see my meningioma squashing my spinal cord into a small crescent shape.  As we already knew, this is the cause of my symptoms.

He explained that my case had been discussed in a multidisciplinary meeting and it was felt that my Meningioma (now named by us as Marty) would be removed first, before my Glioma (Gary).

To get Marty will require the surgeons to cut a hole in my skull base, just behind my right ear and also remove a piece of my top vertebrae.  As Marty is pressing up against my spinal cord, they dare not get too close for fear of damaging it and crippling me, therefore they will have to leave a small tail behind, which can be treated with radiotherapy in the future, should Marty try to make a comeback.

Whilst he was showing us the images, I became fascinated with one in particular which was a vertical dissection of my head. I realised that I have exactly the same profile as my late Dad, complete with the classic Hannah ‘Roman Nose’!

One thing that makes Marty the priority is the fact that in the experience of my surgeon, whatever symptoms you have when the Meningioma is removed can often remain, although no new symptoms should develop.  In my case, this means that my numbness may continue but I can live with that.

As positive as I am, there is no escaping the risks that come with major surgery and the procedure to rid me of Marty is so complicated that both of LGI’s Meningioma Neurosurgeons will carry out my operation.  Any operation carries the risk of complications that could kill me but despite all of this I am as keen as ever to get started.  It has to happen, so the sooner the better.

During this first meeting, another surgeon popped his head through the door and as it happened, he will be my Glioma surgeon.  By a stroke of luck, he had time to fit us into his schedule, so we took the opportunity to find out more about my Glioma, Gary.

The Glioma surgeon called up my scan in his consulting room and showed us exactly where Gary is located.  “The good news” he explained “is that nothing much goes on in that part of your brain”. A bit rude, I thought! He went on to explain that none of my key motor functions are controlled by this part of my brain.  We were told in more detail that Gliomas are what is called ‘infiltrative’ in that its bad cells are mingled with good cells, making it impossible to remove all of the bad cells.  This presents a challenge as all Glioma cells will always eventually turn nasty.

He used the analogy of having 10 bad smarties.  The surgery will aim to remove as many as possible, e.g. leave only 3 bad smarties.  He said that in all probability, these remaining bad cells will behave themselves for many years, although they will get me in the end if nothing else does first. In his opinion and that of the MDT, I have a low grade (slow growing) Glioma but he has organised a second MRI scan to ensure that it is definitely low grade and slow growing.  My wife asked him “what if it is a high-grade Glioma”?  The consultant paused for a moment and replied “Then we are talking prognosis and timescales”, that was quite a sobering moment, and as I write I have yet to have the confirmation that Gary is behaving.

According to the surgeon, I am unusual in having two completely different types of tumours at the same time, well lucky me, I guess.  “We don’t give loyalty points for having more than one” he pointed out, so no free café latte for me then!

So, we now know what to expect from the surgery. Starting with Marty, I will spend at least 6 days in hospital and 6 weeks recovering at home if all goes to plan (and how often does that happen) and once I am well enough to face more surgery, I will undergo a craniotomy for Gary with a similar recovery time.  It looks like 2022 will be pretty much fully booked.

To close this post off I would just like to say to anyone who is facing time in hospital (as someone who has spent a lot of time with health workers) that from the person that cleans the ward through to the surgeon that does your operation, treat them all with courtesy and respect.

This is mainly because they deserve it for being dedicated and hardworking, but also because if you don’t you could well find that you are always last to get your food and drinks and you are waiting a long time to get your ass wiped.

As for radiographers, I have been married to one for 36 years. They are really crazy and they have real ray guns, so be nice!

The ‘T’ Word Part 1 – The Power of Words.

Anyone who works in sales or marketing understands the power of words.  The right words can change minds, close deals, and create a brand.

Some words however can change your life.  For us these words were spoken by my GP, “Sorry Mr Hannah, but you have two tumours on your brain”.

It doesn’t hit you immediately, but those words changed everything. Everything that I thought I knew about our future was gone.  The certainty of growing old with my wife, gone.  The certainty of watching our grandchildren grow up, gone.   Suddenly you have no certainty of what will happen and a creeping panic sets in about what is to come.

Once the words have sunk in, you have a couple of choices. You can collapse into a self-pitying heap and sob, or you can give yourself time to sit calmly, clear your head and accept that life has changed. 

I chose the second option.

After a few minutes I found that an unexpected feeling of calm came over me. Faced with the very real possibility of an untimely and not too distant demise, I was surprised to discover that I am not actually scared of dying. In fact, of all of the potential events triggered by the news, death was very low on my list of concerns, with my bigger worries being how will my wife cope and how would my absence affect our children. The emotion that I did get was anger at what we, as a family, would miss out on.

Wednesday the 13th of October was officially the last day of normality for us.  Mid-morning on Thursday the 14th, my wife was telling a friend on the telephone that we were feeling happy and were finally settling into retirement. We received the fateful call from the doctor just 15 minutes later. Our lives were now to be defined by life before the call and life after the call.

So, what led to the call that changed everything for us?

I retired in January 2021 after 10 years doing a job that I loved, working for a Swedish tech company.  We took early retirement to leave us free to spend up to 6 months a year in New Zealand with our daughter, Charlotte and our first (and probably only) grandchildren.  Of course, the pandemic stopped us going and as I write we are still not sure when we will be able to go.

A few months ago, I started to experience the sensation of being hot even when my body temperature was normal. At that time my GP attributed it to the stress of retiring.  The heat sensation then moved to my right side only but the GP continued to believe that this was stress related.

Eventually, in addition to the hot flush, I discovered that I had lost a lot of sensation in my right side. I was running a bowl of hot water but only my left hand could feel the heat whilst the water felt tepid to my right hand. This triggered a series of tests, including a full blood analysis, as the GP now became concerned that I may have had a stroke. When the blood tests came back as normal, the last remaining test was an MRI.

Photo by MART PRODUCTION on Pexels.com

We currently live near the Harrogate General Hospital, where the MRI scan was to be done so when, on Wednesday the 13th I got a call asking if I could be at the hospital for a scan within 15 minutes, I was really pleased.  I happily walked to hospital and within 15 minutes I was filling a locker with all of my more magnetic possessions that I had on me before going in for the MRI scan.

MRI (Magnetic Resonance Imaging) scanners seem to be a big cause of stress for a lot of people, my own late father had to be removed from the machine due to a panic attack. I personally don’t have problem with it. The MRI scanner is basically a large white floor mounted doughnut and the dreaded scan tunnel is only a few feet long and open at both ends. When you are in the scanner, you could reach up and feel the other end. You could easily get out even if the moving table failed for some reason.

I was asked to lay down on the scanner table, earphones were put on me followed by some padding to keep my fat head still. Finally, a plastic cage was placed over my head which is fitted with a small periscope so that you can see what is happening in the room.  The radiographer hit a button and I gently slid into the scanner.

The only problem that I had was that the room was so warm and I was so comfortable in the machine that I was soon fighting the urge to doze off! Even I would have been embarrassed if the table had slid out of the scanner with me gently snoozing like a hibernating sloth.  Anyway, scan done, I wandered happily home, expecting a call to tell me that I had a trapped nerve and to book me in with a physiotherapist.  Well, as it transpired, I was partly correct.

When the call came, less than 24 hours after the scan, we knew that this did not bode well, especially when the doctor began the call by asking if I was at home and did I have anyone with me?  After passing on the good news, he then described what they believe that we are dealing with.

When I said that I thought that I had a trapped nerve I was in a way correct, but what I have is a trapped spinal cord.

At the base of my skull, at my brain stem, I have a 25mm Meningioma. This is a benign (non-cancerous) tumour but because of its size and position, it has compressed my spinal cord from its normal 8mm down to 2.3mm and this is the cause of my loss of sensation and feeling hot.

In looking for the cause of my problems, the MRI scan also showed a second tumour. This is of a different type know as a Glioma, located in my right frontal lobe. Although in children, a Glioma is typically a distinct mass that can be removed, in adults, even a benign Glioma is what is called infiltrative which means that the bad cells are mixed with the good cells and therefore impossible to remove completely.  If left, even benign Glioma cells will mutate and become malignant and deadly.

One way or another they both have to go and sooner rather than later.

So here we are, after one short phone call our peaceful and relaxing retirement is on hold and I have gone from gently poking fun at my Mum-in-Law in my blog, to having long periods of contemplating the possibility of not making it through my 60’s.

Strange times!

Stu

PS: In the posts that follow this one, I will chart my trip through the “It’s a tumour after all” ride. I think it will help me to keep things clear in my mind and maybe help anyone else who find themselves where I am today.

In Part 2 I’m going to talk about my first encounter with two people who are about to loom large in my future, my Neurosurgeons.