Telling this in my own way…
Trigger warning – please be aware that this page discusses topics including complex brain surgery, mental health and wellbeing challenges…also, there are a couple of swears…so…soz.
Gradually, over a long period of time, the “ouch, that’s a weird sensation” headaches that I experienced when laughing, crying, shouting or cheering (most notably at the weddings of my awesome friends!) became intense pressure headaches, giving me weirdly overwhelming pain.
I went to see my doctor and a blood test was taken.
I had a phone call at work to talk me through the results: in my head, inside my brain, lives an important operation panel that’s the size of a pea. It’s small but mighty, making chemicals and systems work all over my body. Mine wasn’t quite right, so it was possibly where the problem was. There was a team at Preston hospital who could explore this and see how to stop the headaches…
Over several months I had appointments for blood tests and an MRI to find out what was going on in there.
All the investigations finally gave us a mug shot. What had been hiding inside my head had been caught on camera – my brain tumour had been found (read about ‘what is a brain tumour’ here).
Lumpy, the petroclival meningioma (to give the little bastard his full title…part of me coming to terms with this all was calling my tumour ‘Lumpy’) sat deep inside my skull and was a slow growing benign tumour (PHEW!) but he had grown into an evil chunk which was now putting pressure on my brainstem and its major nerves and vessels (ARRGH!!). Lumpy’s presence was overwhelming and terrifying, but fortunately he hardly grew over the next 3 years, giving me time to come to terms with the future problem solving solution AKA “brain-surgery-to-evict-the-tumour”.
I have never broken a bone.
I have never had a tooth filling.
The malevolent loathsome Lumpy threw me in at the medical deep end when he started growing again…he was now 4.3cm wide. Manual expulsion was needed….during Covid.
In November 2020, I had my first surgical procedure: to block off the major blood vessels that fed Lumpy, in order to reduce bleeding during “The Big Eviction” in December. The specialist team were able to block two of the three vessels feeding Lumpy (YAY!) but – adding bungs to my bung of a tumour meant more bulk and yet more pressure (WOAH).
I was in hospital for 2 weeks and had never experienced such intense pain before…this was terrifying as the full on “let’s open-a-door-in-your-skull” invasive surgery hadn’t even happened yet! Blimey.
This operation was to get some bulk out of Lumpy. About a quarter of my hair was shaved off from the side of my head, and a new skull door (about the size of the palm of my hand) was created there, with my left temple as the door hinge. This was for the amazing team to enter my brain box. Blimey.
It took NINE HOURS for the team to reach Lumpy, evict two chunks of him, shut my skull door and staple it closed.
3 days later I remember being awake…I could say about 3 words. By day 4, about 10 words. After day 5, I was managing basic sentences. Then after day 9, the 29 staples in my skull door were removed.
THE PAIN though…I have no pain threshold, I just persevere.
(“Yes, I’d love another blood test…….ow ow ow OW OW OW!! NNNGGGGGGG….Urgh. Ow. Fucking hell. Sorry.”)
Because Lumpy was so tangled up around important brain components, I had subsequent problems; a major nerve to my left eye was bruised and not working properly, so my eyes and my vision weren’t straight. Lefty eye was too much of a lefty…it would take 4.5 months to see clearly with both eyes open.
Through recovery I was supported by an amazing team of NHS staff, tirelessly powering patients through recoveries, all with the complexities, isolation and risks of Covid raging across the country.
I was discharged from hospital on 20th December and spent Christmas in Lancashire with brilliant support from my mum. I was absolutely wiped out. It took over a month for the swelling on the side of my head to go…all the while naive me kept thinking “am I better yet? When can I get back to work? Why hasn’t the swelling gone yet? Am I better? Am I better?? When will I be better???” on repeat – I couldn’t properly comprehended “it takes time”…
Some of Lumpy was out – yay!
But those evil headaches were still there…shit!
After 3 months I had an appointment to talk about progress with my surgeon.
Turns out Lumpy wasn’t a neat bobble, he was a raggedy scruffy git who was all tied up around some important brain tubes in the bit around my ‘foramen magnum’ (or my ‘Great Hole’ in Latin, the name will never not be funny).
The brain has separate areas, and chunks of Lumpy had been evicted from two of them. However, from the skull door in my left temple, it wasn’t possible to reach far enough down to the evil root bit that was bunging up my ‘great hole’.
Given how tangled Lumpy was, I was referred to a specialist surgeon at one of the UK’s top brain surgery specialising hospitals – Salford (40 minutes drive away…which was handy!)
It was here that I was diagnosed with epilepsy, after describing the overwhelming panic attacks I’d been experiencing, where I couldn’t move or speak. Medication would sort it out apparently – turns out it’s regular from brain surgeries!
In essence, because of where Lumpy is, if this operation didn’t happen, he would eventually kill me. But because of where Lumpy was, it was high risk surgery which could also kill me – plus the list of likely side effects were terrifying…from facial paralysis to impacted cognitive abilities, balance, vision, hearing…bit of a bummer, right?
My hearing!?? Woah – now then…this meeting was in April 2021, and we spoke about the operation being planned for June/July. Given the aforementioned risks, and how much I had been walloped by round 1, I asked if September would be a possibility instead…because PRIORITIES! Firstly I needed to power through to the mighty metal music festival that is BLOODSTOCK! Heavy metal powers me through dark times, and I had to experience it at least once more. In the meantime I was doing at least 10k steps every day to build up core strength, hoping for the best and fastest recovery to get back to work. I was even litter picking with bin bags to feel more productive.
This is a tough bit.
Without too many details. The operation had begun, and a second door had been made (on the lower floor) with another hairline hinge. However during the surgery, something went wrong, and I went into cardiac arrest. My heart stopped beating for 12 minutes and I was given manual chest compressions until a defibrillator could zap my heart back into action. An uncomfortable though mind blowing combination of amazing humans and awesome technology!
I remember waking up and asking if Lumpy was finally gone, only to be told he wasn’t – the surgery had had to be abandoned. I felt both sad and surprised – why?
The pain was overwhelming – across my chest from the resuscitation, throughout my head and neck from the surgery, and with Lumpy still causing the same pain as before. I was mostly overwhelmed by what could have happened but didn’t, thanks to an amazing team.
Afterwards though, the reality of ‘what could have happened’ completely devastated me. I was scared, confused, exhausted and felt broken – I just wanted Lumpy to sod off so I could get back to work.
Lumpy, my uninvited troublechunk, had won this battle and remained lodged in my head.
The battle, but not the war – bring on January.
Mid January was here. My amazing surgeon and team were all positive, calm and reassuring.
Lumpy, that evil skull squatter, was going to be evicted.
Apparently it takes 2 years to be as recovered as possible after brain surgery. I’d had two major brain surgeries…and was going in for round three…in the space of 13 months.
All of the scary. All of the emotions.
On 17th January 2022, the eviction of brain intruder Lumpy’s most dangerous chunk, the one tangled up around my really quite important (in a life sustaining way) arteries and nerves…was successful!! WOOHOO!! He’s gone and I’m not! I hope the skull door hit you on the arse on the way out of my head.
What an epic head turner…literally…I could finally turn my head properly! I could shout, laugh, shout, cry and shout without intense pressure pains. Given how bad a guest Lumpy had been, it was obvious he’d go and leave some teeny nuggets of his crap wedged deep in the shag pile of my brain, but removal was too much of a risk – those gits will be lasered off as and when needed, for now they’re not causing a problem.
In early February I was finally ready to go home and my mum in shining armour (sensible shoes) mounted her dashing white steed (hopped in her campervan) and took an 8 hour round trip from Norfolk to Salford and back, so I could leave hospital safely!
There were and are still tough challenges that I’m getting to grips with and adapting to. Lumpy was tangled around core systems in my brain, meaning a major eye nerve was affected during removal. My left eye will no longer move properly and isn’t quite straight. The left side of my face was temporarily paralysed, with my nerves still needing time to recover. I had to wear an eyepatch and use eye drops to protect my eye until I could blink – over 6 months later.
Blimey recovery is shatteringly exhausting. It was the roughest yet. I was sleeping in excess of 12 hours a day for over 3 months – but sleeping is when healing happens, and a lot of healing needed doing
Two years after my last surgery to evict Lumpy, I still get tired much faster than the former me…and I’m adapting to new ways to handle daily life. I’m still trying to get my beans back – and the ole motto of ‘it takes time’ still really pisses me off!
Sometimes things really pile up, and I struggle to accept everything that has happened, and the changes I’m now living with ‘Life is what happens while we’re making other plans’ and all that. I’ve been overwhelmed by feeling useless and pointless at times. I struggle with focus and concentration. My memory isn’t what it was. I’m still working on accepting ‘the new me’ – I have to, because there was no alternative. I am still here. I nearly wasn’t.
What I want most is to get back to my career and being part of an awesome team again.
My lil gradual steady progression…it takes time – but thank multi sweary swears for artsing!!
Art is crucial to my recovery and wellbeing. It helps me feel positive and productive, Being out in nature brings my focus back into ‘the now’ – I can lose myself in how gorgeous and fantastical nature really is. I watched eels in my local river, hear nestling buzzards yelling to each other and could happily watch bees and bugs for hours.
Cue bonkers circumstances…
On the day that would have been my dad’s birthday – I had an important video meeting with my awesome surgeon and senior nurse to check on my progress – AND – Chris Packham was coming to give a talk in Hunstanton! It was an overwhelming, emotional and even more impactful day than I ever could have imagined…
After his talk, I gave Chris Packham my drawing of Foxy – his favourite animal – to thank him for his work championing wildlife and advocating how important nature is to mental wellbeing. I wrote a letter to summarise what I wouldn’t be able to explain in person; how much he had inspired me since I was young, and how battling ‘Lumpy’ had brought me the most vivid appreciation of doing work that matters, and living in the present – and how starting my artwork was empowering me to feel productive again! I was over the moon when he shared Foxy across social media. Artwork hadn’t been shared in #FoxoftheDay posts at that stage, and mine was just my thank-you gift for the impact he has made.
I’m still in ongoing recovery, and I have more consequential troubles to fix after all the surgery. Occupational Therapy helped me power up my brain beans. Getting back to my career working with epic social enterprises has been hugely important for me, and I work part time in the background and helping make a difference. I continue arty crafty activities because they phenomenally empower my mental health.
Given the amazing care and support I have had, it’s important for me to feel productive and be paying forward positivity. My artwork sales will include donations to amazingly important charities.
Please join me on social media for regular updates and to see what my latest works are. Raising awareness of my work and as customers, you are supporting my progress back towards independence – thank you so much.
This quote from his speech has powered me through so much:
“Remember that whatever discipline you are in, whether you are a musician or a photographer, a fine artist or a cartoonist, a writer, a dancer, a designer, whatever you do you have one thing that’s unique.
You have the ability to make art.
And for me, and for so many of the people I have known, that’s been a lifesaver. The ultimate lifesaver. It gets you through good times and it gets you through the other ones.
Life is sometimes hard. Things go wrong, in life and in love and in business and in friendship and in health and in all the other ways that life can go wrong. And when things get tough, this is what you should do.
Make good art.”
I shared my drawing on Twitter.Neil Gaiman responded with ‘Beautiful’. WOAH!!
