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
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.
We’ve been busy bees recently, getting ready for operations that didn’t happen and then embarking on a Grand Tour to catch up with lots of our friends back in Leicester who we haven’t seen for ages.
This is one of the reasons that I haven’t been able to publish a new ‘T Word’ post for a while but I’ve not been idle. Since blogging I’ve had quite a few people suggest publishing the blog as an eBook, which I thought was a nice compliment. I’ve also been trying to think of a way to raise some money for the Brain Tumour Charity and I suddenly had a lightbulb moment that the eBook might be the opportunity to do this.
Even though we are runners, at our age and ability, Charity marathons or even half marathons are not for us but the book could be the way. I’ve spoken to the BT Charity fundraising team who were very helpful and encouraging. They also shared the experiences of others who have done the same, sharing how they managed the fundraising etc.
So, the book is going to happen but is going to take time to get together as I want to expand on some of the original posts but also my brain tumour story isn’t over yet as Gary the Glioma is yet to be dealt with, so I have more to write about!
Another idea that came up as a quick way to try and raise money while the book comes together is to turn the existing version of the blog into a podcast. This turns out to be easier than expected. I already have a great recording software on our Macbook (Garage Band) and there us a wide choice of hosting and publishing services for podcasts, so my preparation for launching the podcast is well underway.
There is no guarantee that any of these efforts will raise any money for the charity but that is no excuse for not trying and it should be fun regardless of the outcome!
You would think that being retired would be a permanent holiday but what with hospital appointments and looking after Mum in law we have recently found ourselves feeling a bit burnt out.
With my next operation date set for December 20th, we decided to head off on a ‘Grand Tour’ including visiting family in Leicester and Derby, a stopover with our son and daughter in law in Norfolk and a week in Bury St Edmunds with our eldest daughter Rebecca. It’s been lovely.
We head back to Leicester today for part 3 of the tour which is certain to pile the pounds on as we are eating out every night with different sets of friends!
As we made our preparations to head back to Leicester we started to feel a sense of sadness at leaving Beccy and Bury, we just feel so at home here, but somehow we felt under pressure to go back to Harrogate and Mum in law, but why? She doesn’t thrive alone (despite what she tells everyone and herself) but she does manage.
As retirees, we should have the freedom to go where we please, when we please but somehow have let ourselves become duty bound to MIL. This has led to a moment of clarity, a moment of “sod this”, and we are coming back to Bury St Edmunds for a few weeks after the second part of the Leicester tour.
This simple decision feels like a major revelation, a sudden sense of freedom! Even in retirement it seems, you can get stuck in a rut. Be warned!
Operation number 2 cancelled for a second time. There is only one thing for it, a Wetherspoon’s breakfast and a curry tonight!
I’m not upset, I have got myself to a place where I am excited to get the operation done but equally since my Neurosurgeon doesn’t think it’s urgent then I am perfectly happy not be messed with for a bit longer.
“A pint of cobra and a madras for me please buddy”
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.
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.