“You have a brain tumour”… that initial gut wrenching feeling doesn’t ever leave I don’t think. I’ve learnt to accept this is completely acceptable… after all my life got flipped turned upside down (to quote the Fresh Prince!). There is a sad awareness that life has changed from here on in and my perspective along with it- my relationships, my choices, my feelings. It took a few difficult weeks for the reality to sink in. I was scared, angry, and upset with how unfair it all was and still am at times. But at some point the penny drops and you have to ask yourself are you going to sink or swim? The way I see it is this a battle – ME vs The Tumour – am I going to come out all guns blazing and fight or am I going to bury myself in a trench and hide?
I feel the most crucial thing to get you through those first few days & weeks is the support network around you. I am so lucky and blessed to have THE MOST INCREDIBLE TEAM. First & foremost my girls: my wife- what. a. woman! She has not just been my rock, she’s been a mountain! As terrified as she must feel, she shows no fear and inspires me to believe everyday. And my beautiful daughters – they make me realise that I cannot and will not lose this war. My greatest achievement in life is being their dad and they keep me focused on fighting hard. I want to see them finish school and I want to walk them down the aisle one day. Alongside the family I started, I was raised in a beautifully loving home and I married into an equally incredible family. They are my A-Team and carry me through every single obstacle I face. My mum and mother in law treated me like a new born child again for the first few weeks – if I had allowed my mum to, she would have literally washed & clothed me everyday! I also found out that I truly do have incredible friends both old and new. All these people have given me and my wife strength. They have been pumping me full of positivity and essentially rebuilding me piece by piece.
Truth be told these first few weeks were horrible and the mind has a beautiful way of boxing up memories you choose not to revisit. If I could lock up that overwhelming initial fear and anxiety in a box and stick it in the attic forever I would! But when you’re facing an inevitable battle there’s no point burying your head, and I’ve found it more therapeutic breaking this mammoth of a problem down into bite size pain-in-the-ass issues I had to learn to accept.
- Being told you have epilepsy: That’s tough news to take. Especially as it meant surrendering my driving licence for a minimum of 12 months and being on medication for the rest of my life to control those seizures. But i’m learning to take the positives out of every situation; I am entitled to a free bus pass/rail card and all my medication/ prescriptions are now free of charge! Whohoo! You have got to take every win!
- Boozy binges: I know this sounds ridiculous but I love a social drink every now and then (maybe 1 or 10 too many!) and the thought of stopping/ cutting down alcohol was a hard thing to deal with. Those nights out with my boys, those casual get togethers – it was hard to think about. But then it hit me, I’d rather be there to experience those moments than not, so I’ve got to just try. It’s better for my general health, it’ll reduce my chances of having another seizure, I can save some money and I can still have a drink but all in moderation!
- Naming the enemy: I’m still not sure where I stand with this! I know some people find comfort in giving the tumour a nickname – I mean the word tumour is pretty horrific! It’s sometimes easier to have a light hearted name that makes it slightly easier to talk about. My wife chose to call it ‘Gilly’ the Glioma! A friend (and fellow Arsenal fan) named it Silent Stan after the current owner of Arsenal- because he wasn’t invited, he adds no value and we all wish he would just bugger off!!! I’m just not sure if I want to give a friendly name to the thing I’m at war with – so for now, it’s just the unwelcome guest in my head.
- To Google or not to Google: Initially all I wanted to do was google and find out more about what this tumour is about, desperately searching for miracle stories of tumour regression… but more often than not that would end in reading a random pop up article which sounded more like a horror story. So now I have resisted the temptation to Google the words Brain Tumour – but I completely get why you would. I’m also blessed to have a doctor for a wife and not just any doctor but a very good one who can explain things very simply and give me an honest answer to my questions, even if that is “I don’t know”. I’m kind of happy to leave the neurological care I need to the experts and not overthink anything now- some people may argue this is ignorant, but to my mind, my neurosurgeon and neurologist have spent a number of years studying to be what they are and I trust them to look after me. There are reasons why people specialise in a certain field of work, because they’re specialists! For example you wouldn’t take your car to a butcher for your MOT! This doesn’t mean I’m not going to try to understand my diagnosis better (e.g. I have a genuine interest in finding out more about seizures), but for now I don’t want to be overwhelmed by the depth of information the internet can provide. Just to stress this is a very personal choice and I’m lucky to have my wife who I trust tells me what I need to know and what is out there.
So for now I’m accepting the situation for what it is. I have a brain tumour, life has certainly changed and this is my new NORMAL. Once you can do that, the next step is already paved out for you… Let the rebuilding process begin.
So well written and moving Sam….. Your words help others to glimpse what you are going through at the moment. What a beautiful family you have xxx
Thank you Sonia – just hope it helps people open up a little bit more on whatever struggles they’re going through. Always much more bearable to carry these loads when you have good people around you helping you take each step. x
We are praying for you. God bless you and your family always. Manjula and Vijay Khullar.
Thank you so much – mum sent me your voice note, i really really appreciate the encouragement.
I loved reading your blog post, I was diagnosed with a Glioblastoma Brain Tumour just over a year ago (called The Bastard’ in our house) and can relate to everything you say here!
Good luck with your battle!!
Hey Duncan, great to hear from you – sorry to hear of your battle; you make sure you kick ‘The Bastard’s butt! Dont give it an inch to take anything away from you – please feel free to reach out if ever wanted to vent to a complete stranger! We’re in this together – good luck with your battle too.