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…..
Personality changes seem to have happened!
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.
How I discovered that Gary the Glioma is now my ‘forever Friend’.
This week I had a follow up appointment to my recent Craniotomy & De-bulking of Gary the Glioma.
I was told by my Neurosurgeon right back at the start of this journey that Gliomas are infiltrative and that he would not be able to completely remove all of the bad cells, however part of me still hoped that Mr Mathew would say ‘got it all’ as was the case with my Meningioma, which in theory at least, should never return, but true to his initial assessment, he pointed out that they had got a good margin around my tumour which gives me a good chance and that it was a Grade 2 Oligodendroglioma.
So in summary here are the reasons that I am still feeling positive about the future.
It is a low grade tumour
It was very slow growing so it could be 10 years before it needs dealing with again (so I will be 70).
Because of where it was (my right frontal lobe) I can have repeat operations without much risk of harm to my brain.
I can have repeat operations. As Mr Mathew said, if it comes back I will take it out again (he has a patient on a 3rd operation)
I’m still here, I could have had a grade of tumour that would have taken me out by now, let alone in a few years.
So it looks like Gary & Mr Mathew will feature in my life for many years (Mr Mathew is fine, not so keen on Gary sticking around) and Gary may well be what finally kills me but something has to. As long as he never changes grade then he might not be my mortal enemy in the end.
With all that said, I might just as well pack as much fun into my life as possible because it all serves to remind me of how precious (and sometimes short) life can be and I am not going to waste it on Gary the Glioma, anymore than is absolutely necessary.
One thing that Mr Mathew did say was that in his 16 years as a Neurosurgeon he had not seen a patient who had both a Glioma and Meningioma. I Guess I’m just lucky that way lol
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.
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.
After a lot of work and a lot of takes I’ve managed to produce an episode of my music and chat podcast aimed at raising money for the Brain Tumour Charity. A lot of the initial effort was getting used to the technology and getting my new boom mike working!
This first podcast is only available on Spotify as I’ve included a few songs from my library. Music has played a big part in my coping with my tumours so I felt it was important to include it since Spotify allows podcasts hosted by them to include music.
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.
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.