My brain tumour journey, probably similarly to many others, didn’t begin the day my brain tumour became a known reality. My journey began in my early teens, when it is believed my tumour, an Acoustic Neuroma developed and started it’s slow growth. This was unbeknown to me of course, as I didn’t have any symptoms of concern until a few months before diagnosis. By then it was nearly the size of a golf ball and was a ticking time bomb whose detonation was imminent.
My journey to diagnosis in hindsight was full of missed opportunities. There had been tell-tale signs that I had misinterpreted, for example in my late teens/early twenties I used to play rugby quite competitively so I spent a lot of time on my fitness, running and weight training.
I started having issues with what I believed was a weakness in my knees which caused balance problems. My dad had suffered something similar so it was assumed I had inherited this from him. I went to the doctors and was sent for an MRI on my knees. As a follow-up I was given physio; the exercises made a difference, life moved on and my tumour remained a secret.
I stopped playing competitive sports so my balance issues pretty much disappeared. A major opportunity to discover the horrible truth had been missed, both because of my assumptions, and a lack of a thorough medical investigation. If I had been properly diagnosed at this stage, rather than 15 years later, my tumour would have been discovered at probably half the size, qualifying me for a wider range of treatments. Fortunately (weird I’m using that word I know, but I’ll explain why later) it wasn’t found at any other point, and life, as it does, continued at its steady pace until….
I’m now 35 years old, married to my amazing Michaela, father to a beautiful 2 year old little girl Dakota and have just bought our first house, after relocating to a new town, miles from our families, for a great career opportunity – and we’re expecting baby number 2.
Life was amazing and everything was moving in the direction we wanted. With the exception of this persistent headache, ear ache and tight chest. The headache had been there for months, not significantly painful but enough to be an irritation. It was the same for the tight chest, but I’d put that down to having mild asthma and the fact we were essentially living on a building site, as our new house was on a new development so there was a lot of dust.
Never in a million years would I have associated this with being a sign of something significantly more sinister. The addition of the ear ache was the straw that broke the camel’s back and made me go to the doctors. At this point Michaela is 32 weeks pregnant. We’re very much at the business end and I’m seriously struggling with the pain and breathing issues.
Another red herring now presents itself; I’m diagnosed with an ear infection (which I did actually have) and given antibiotics which I take but obviously do nothing for the pain.
Two weeks later, I’m in more pain, still struggling to breathe but now with serious balance issues (I’m struggling to walk unaided at points), an awful ringing in my left ear, dizziness and distorted vision. I go back to my GP who immediately tells me to go to the hospital for further investigation. She thought I had an abscess in my brain.
By this point I knew there was something seriously wrong, to be honest I’d known for a long time, but was in denial and just had the attitude of ‘ignorance is bliss’, but as you know the longer you ignore an issue the bigger it gets.
I arrive at the hospital, and surprisingly get seen very quickly (this was the last time I was surprised at being seen quickly at any medical setting). I had all sorts of tests, cumulating in a CT scan of my head. Within 30 minutes of having that scan I was called in to see the A&E consultant, never good news if the top man wants to see you personally, but here we go. I’m expecting bad news, so as long as they don’t tell me I’ve got moments to live, I’m ok.
The nurse who had been with me all day sat with me and the consultant delivered the news, “You have a brain tumour!”
Although I expected to hear bad news nothing prepares you for your reaction, my reaction, well, I laughed and laughed loud. I didn’t find the diagnosis funny in the slightest though. I was instantly petrified.
When you hear brain tumour you naturally think this is the beginning of the end. No, I was laughing at myself for allowing myself to live in blissful ignorance. Allowing this situation to develop to the point of it nearly costing me literally everything. I am fortune’s fool!! The A&E consultant proceeds to tell me, “Tumours in this area are usually benign, a ‘quick’ operation and it’ll be out”. I was rightly sceptical.
Two weeks later me and Michaela are in front of my neuro consultant, who gives us enough of the truth to make us realise how grave the situation was; we were 36 weeks pregnant and my consultant’s view was that he had 3 patients: me, my heavily pregnant wife and our unborn baby, so he had to approach this delicately only giving us the information we absolutely needed without scaring Michaela into premature labour.
We leave the hospital that day with a better understanding. I have a very large Acoustic Neuroma, my brain stem was being significantly compressed, my left side facial nerve had been stretched as thin as cling film, my only option was surgery (ASAP).
It was expected that I’d be left single sided deafness (SSD) with a level of facial paralysis due to how damaged my facial nerve already was. Basically I was in a bad, bad situation and the only option I had was to put my faith into a man I’d literally just met. It turns out to have been one of the best leaps of faith I’ve ever taken.
The drive home was weird. I had gone into denial and put on a mask of ultra positivity that didn’t come off for the next year or so, it was exhausting and didn’t fool anyone close to me. Well maybe me.
Michaela lost it, completely understandable considering the enormity of this diagnosis, the fact that we were weeks away from welcoming baby number 2 and had just bought our first house. Not that there’s ever a good time for a brain tumour diagnosis, but this was seriously bad timing. This was supposed to be a time of immense joy, a time where all the love and support should have been directed towards Michaela and our unborn baby, but instead it was brutally shifted onto me. I still feel I robbed her of that moment and it breaks my heart.
Over the next few weeks I’m pumped full of steroids and the hunger, the overwhelming ravenous hunger completely consumed me. My 2 year old little girl, Dakota, would often wake up between 4 and 5 a; I used this as an excuse to get up and eat my first breakfast. Most days I had 3/4 meals before lunch, then ate lunch and continued eating anything and everything until I went to bed only to repeat this every day until my surgery.
About 3 weeks after meeting my consultant, our baby boy Nixon arrived. For a brief moment my brain tumour disappeared, well moved to the back of our minds at least so we could enjoy our baby bliss. A brief reprieve from the uncertainty and the perfect inspiration for me to use to help give me the focus I needed to get through what lay ahead.
Four weeks later, and I’m heading to the hospital. It’s 19th of November 2018 – 2 days after Michaela’s birthday, and what a way to celebrate. My little boy is 4 weeks old and right now I’m just happy I got that time with him. Throughout the last 7/8 weeks I’ve not stopped eating and I’ve ballooned from an in shape 13 1/2 stone frame, to a whopping 17 stone. At this point I literally looked as if I’d eaten myself, I had never looked so bad or weighed as much.
As I waited to be taken to surgery, I’m doing all I can to remain positive but I feel myself cracking. I remember telling Michaela if she was going to cry then she should just go. I was so horrible saying that, but in that moment all I was thinking about was not breaking down myself. Seeing her upset would have pushed me over the edge.
My time to go down had come. I said my goodbyes to Michaela and her dad, and walked myself down to theatre. There was something quite empowering about actually walking into there of my own free will. I saw it as having a bit of control in a situation that was completely out of my control.
Before I knew it, I was waking up in ICU. I’d just had a 13 hour Retrosigmoid surgery. This approach is where they open a relatively small window in the back of your skull, and lift your brain up to access the tumour. It’s extremely invasive, but does provide the best chance of retaining your hearing.
Thankfully that was the case on this occasion. Against the odds I still had my hearing and no more facial nerve damage. I had major double vision though, my eyes were literally pointing in completely different. Although I felt awful from the anaesthetic and in pain from the major brain surgery I’d just had, I genuinely felt like I’d won the lottery. I’d made it! I was alive!
For the next 24/30 hours all I did was drift in and out of consciousness, occasionally paying my suffering wife a little attention. I wasn’t very good company at this point but I soon started perking up. I managed to sit up and eat some food, I had some family visit and got a little excited, calling out to them very loudly across the ICU. So embarrassing looking back now, but I feel I have a legitimate excuse as I was under the influence of a lot of drugs.
I was moved onto a ward a short time later and I seemed to be progressing well. I had some visitors and was feeling good, that is, until around 5 o’clock on day 2. I started getting really bad headaches. It was excruciating. It was 100 times worse than a migraine type headache. I was dosed up with morphine and given a side room.
Apparently, at about 9pm I called Michaela, literally screaming in pain. I have no recollection of this call at all. Michaela called the ward and they reassured her I was ok but they would get the doctor to check on me. They eventually did, and Michaela got probably the worst phone call of her life to date. At 11pm, my consultant calls -and you know it’s not going to be good if your consultant is calling at that time. Nevertheless, he called and said, “Michaela, are you with someone?”.
“Yes,” Michaela replied, “I’m at my mums”.
Mr Jeyaretna explained, “Michaela, Nick’s brain is swelling, he needs emergency surgery. Do I have your consent to take him for surgery?”
“Yes of course” replied Michaela.
He added, “If I don’t operate now he won’t make it through the night, there’s a significant chance he won’t make it through this procedure, but if I don’t operate he definitely won’t. Can I call you at any time?”
“Yes”, replied Michaela, stunned.
Can you imagine having a 4 week old baby in your arms, your 2 year old asleep in bed and basically being told to prepare yourself to lose your husband? Talk about mental torture. To this day I’m still devastated she went through that because of me. The worst part is this was just the beginning.
Thankfully, my superhero of a consultant had somehow got me through the night. He’d had to perform a significant craniotomy to create a hole in the back of my skull to allow my brain to swell into, to relieve the immense cranial pressure which was threatening my life.
He also had to remove part of the top of my spine. I thought I was going to be left with impressive scars after my first surgery, those incisions were made to look like child’s play in comparison to what I was left with. A massive horseshoe cut, sealed by over 1 hundred staples and a lot of stitches. Unfortunately this wouldn’t be the last scar I’d gain.
For the next 3 months, I was almost a permanent resident on the neuro wards of the John Radcliffe hospital, leaving temporarily on a couple of occasions. Through this time I had many more complications. I developed hydrocephalus and underwent 8 further procedures. The worst of which was the fitting of an inter cranial pressure (ICP) monitor.
This procedure is supposed to be done under general anesthetic, but due to the fact I’d just undergone 2 major surgeries lasting around 20 hours in total, it was advised I had this surgery done under local anesthetic, so I’d be awake and fully aware of this procedure.
So down to theatre I go, my head is literally bolted secure to the operating table so I couldn’t move. They cut my scalp open and then proceeded to drill through my skull. I can still feel the vibrations and hear the sound of my skull cracking. It was, and remains, the worst 30 minutes of my life, but absolutely vital to understand what was going on in my head to help get me on the road to recovery.
I was fitted with a shunt (an internal catheter) which drains the excess cerebral fluid from my brain into my stomach cavity. This helped, but it took multiple adjustments and revisions (replacements) to get me to a point where I could start living again.
The reduced pressure on my brain stem through the resection of my tumour had also taken the pressure off of my optic nerve which sent my eyes wandering. So much so, that I had to fashion an eye patch just to be able to focus on anything. This was something I quickly learned to embrace and take ownership of, as it would be a permanent fixture for the next year.
The best thing about wearing an eye patch was that I became an honorary pirate and the biggest bonus that you get to drink rum whenever you want with no judgment…….except from those who refuse to recognise you as a pirate of course!
I left hospital on a couple of occasions during my 3 month residency, once was at Christmas but this was short-lived. On reflection I should have stayed in over Christmas, as my presence at home ruined it for everyone that day. I did nothing all day except get out of bed for 15 minutes in the morning to unwrap presents only to go straight back until Christmas dinner was served. I came down I ate two mouthfuls and when back to bed. That was my involvement in the day.
For everyone else there was the constant worry and stress of having me at home, as clearly, I still wasn’t right. On Boxing Day I returned to the JR where I would stay for the next few weeks. It was during this period I started to accept that life as I knew it was over. This was when the demons gained control of my mental health.
I became fearful of leaving hospital, in case something went wrong and I ended up in severe pain again. I also have a huge part of my skull missing, so illogically I constantly worried that everyone was going to hit me in the back of my head. That had never happened to me before, but now that I had this hole in my head everyone’s going to have a go right?
I developed crippling anxiety that always resulted in me being physically and violently sick. This kicked in whenever I felt pain, which at this point was pretty much all the time. Whenever I stepped foot outside the ward I would have a panic attack, which again would lead to me being physically and violently sick. It was a terrifying time. The hospital had become my safe place and my psychological prison. I had become institutionalised.
Eventually I was deemed fit for release, and at some point around the end of February I was kicked out of the hospital and sent on my way to fend for myself. Although it was so nice being with my family every day, and getting to be an active part of my new babies life, every minute was a battle. A battle with anxiety, or a battle with the pain.
It felt like I was fighting a losing battle but admitting defeat has never been something I’ve been good at! Although I felt awful for 99% of the time, I attacked every day and every challenge with overbearing positivity and a good old fashioned “can do” attitude. It was of course just a mask. It was a complete sham. I was petrified of everything but I knew the only way to get through this was to meet it head on and not to back down. I was absolutely faking it until I made it.
To the world, I thought I was portraying myself as a pillar of strength and unwaivering positivity, and to most that’s exactly how it appeared. Those closest to me saw through the lie, but without question, they supported me with how I was choosing to deal with this awful situation. They understood what I was trying to do. Looking back through, I wish I could change some of my Facebook posts, cringe worthy to say the least!
Life carried on and I was recovering, gaining strength, control and confidence with every passing day. Although my daily, anxiety-driven panic attacks had become a mainstay. They would not leave for a long time.
It was the day before Good Friday 2019, it was a lovely sunny day. I was feeling good (aside from my daily morning vomiting session) and we decided to take the kids to the local farm to get some fresh air and spend some quality time together as a family. We’d spent so much time cooped up at home where I was basically Michaela’s patient, so a lot of that time wasn’t “quality”, especially for my family.
We were having a great time. I ran the sheep race with Dakota. I shocked myself that I actually managed to run, although it didn’t feel great. My brain felt like it was rattling around and because I was wearing an eyepatch I had no depth perception and my vision was also rather bouncy.
This all made me feel a little nauseous so I sat down for a bit to gather myself before we headed off on the Easter trail. About half way around – and it was only about 1 1/2 miles long – I started to feel really unwell. I was extremely dizzy and nauseated. So much so, that I had to lay down.
So there I am in the middle of this trail through the woods and fields just laid out in the dirt. Michaela understandably, not really knowing what’s happening, asks me get up as it’s embarrassing. To be fair the way I just stopped and threw myself to the floor probably looked over dramatic, so I understand how it would have looked but I was just doing what I felt I needed to at the time.
I eventually got to my feet, holding onto Nixon’s pushchair for dear life. I explained to Michaela how awful I was feeling and that I needed to go home and sleep it off. The day was now a write-off because of me. We somehow made it back to a park on the outskirts of the main farm complex, where I started vomiting. I was feeling worse than ever and just needed to get home and go to bed.
Michaela got the car and we drove home, stopping periodically on the way back so I could get out to be sick again. As soon as we got home, I crawled upstairs and lay on the bed. Mission accomplished, or so I thought. A few hours sleep and I’ll have reset and be ok. It’s about 2:30pm at this point, but as suspected I needed sleep so pretty much as soon as I lay down I was gone. Michaela came to see if I wanted some dinner at around 5pm, but I just told her I needed more sleep.
Naturally, she’s thinking I’m going to be up all night so was hoping to encourage me to get up for a bit, but I just sleep. Bedtime comes around and I’m still fast asleep, Nixon wakes up for his night feeds and I sleep through the lot. Morning comes and Michaela tries waking me up to see if I’m ok, but I just grunt at her, roll over and go back to sleep. She gives me a couple more hours before checking on me again, this time she’s getting no response at all. I’m breathing, but remain firmly unconscious. 999 is called immediately, our neighbour takes the kids and within minutes the ambulance has arrived and I’m taken to our local hospital.
Michaela explains my complicated medical situation, telling them I have a shunt and that she suspects it’s blocked and that I need to be transferred to the John Radcliffe. She was basically fobbed off and told they’ll assess me and go from there. I had a CT scan and a full body X-ray to look at my shunt tubing. The images were sent over to JR’s neuro team. They confirmed Michaela’s suspicions, my shunt was blocked and I needed to be transferred to them immediately.
This all happened on Good Friday. On the morning of Easter Sunday, I opened my eyes and instantly realised that I’m in hospital. But what for? Ah yes, I remember I’m here for a hearing test. In that moment I genuinely believed I had stayed at the hospital in preparation for a hearing test.
Oblivious to all the drama I had caused over the last few days, I called Michaela, I hadn’t seen a nurse or doctor yet, as I’d literally only just woken up and my first instinct was to call my wife. She answered the phone and I instantly noticed the shock in her voice. “Nick?”
I responded with “Yes babe, everything ok? I’m in hospital, what am I doing in hospital?” Michaela, “Has the doctor or Nurse been round to see you?”
“No” I replied. “I’ve just woken up and called you straight away.”
“Do you want me to explain things to you now, or do you want me to come up there and tell you?” Michaela replied. “Either way, I’m coming to see you straight away!
“Just come up and tell me when you get here” I replied.
About 45 minutes later, my amazing wife arrived and proceeded to fill me in on the events of the last few days.
On arrival to the JR they tried changing the settings on my shunt to see if that would unblock it. Saturday morning came around and I’m still unconscious. My consultant popped into the ward on his day off, sees my name on the board, immediately questions why I’m there and comes to examine me physically and look over my notes.
Realising the severity of the situation, he immediately puts a plan into action, another set of actions that this incredible man did to save my life. Basically at that moment I was in a coma and had been since the day before Good Friday. My shunt was blocked and the only thing that could improve my dire situation was to have the shunt replaced, otherwise known as a revision. Surgery number 11.
This procedure worked, and by some miracle I was still here. Now I’m not in any way actually saying I’m Jesus but I did fall on Good Friday and rose up again on Easter Sunday. Coincidence?
I spent the following 2 weeks in hospital, recovering and getting the settings right on my shunt. I went home and tried to carry on as normally as I could, but there’s nothing normal about the recovery from multiple brain surgeries. I’d been left suffering with severe brain fog, a serious lack of balance, major fatigue, the dodgy eyes, I could go on but basically I wasn’t in a good way. I gradually improved over the coming months, until the fog started to clear, and my eyes came nearly back in line. I’d worked on my balance through vestibular physiotherapy, and my fatigue resilience had increased.
Around 11 months after my first surgery I went back to work. I was still struggling with the daily panic attacks, walking like a drunk and the brain fog was awful but I needed to start “doing” again, feeling like I was of use in some way.
At the time of diagnosis, I was working for Honda Logistics as a Site manager running one arm of their business. They were absolutely amazing throughout, ensuring I got the best medical treatment, supporting me and my family financially and just being all round amazing, caring people. I was very lucky to have been working for such an incredible organization at this specific moment in time.
On returning to work they wrapped me in cotton wool and had me doing menial tasks, which I was incredibly grateful for initially, but this did get frustrating after a while as I felt I was capable of more. However, I know looking back I definitely did not appear like I was capable of more at all. My mental health was seriously restricting me. My anxiety was a constant presence and made me appear extremely frail. I still had balance problems and my anxiety was exacerbating them. I had almost constant headaches as well, so it’s no wonder I wasn’t being seen as “capable” of doing my old job. So I was stuck filing until the world was turned upside down by the dreaded COVID and lockdown.
Obviously given my circumstances I was instantly put on furlough. For a lot of people furlough was a horrible, tortured isolation, but for me, Michaela and my kids it was a gift. An opportunity to make up for my 3 months in hospital. We spent most of furlough on the decking in our back garden, lapping up the sun and enjoying just being together. We knew this forced peace would be followed but utter chaos in the world, so we just made the most of this time together, especially as I was still being paid. Why not enjoy it?
The world eventually started to regain its senses, and the cogs started turning again, albeit with significant restrictions. I went back to doing nothing of any significance at work. This continued for a while until we were rocked hard by the devastating news my tumour was growing again. I’d need another surgery, and soon. What the actual? Why is this happening? Had I not been through enough?
I was booked in for surgery for the beginning of January 2021, but during my long wait for this (due to the pandemic) Honda announced its planned departure from the UK. On top of this impending major surgery, I now had the stress of knowing I’d soon be out of a job too, and who’s going to employ someone like me? As I’d come to see, getting a job hasn’t actually been the issue with employment after Honda.
As Christmas approached, I was informed that my surgery was going to be postponed for a few months, due to the backlog caused by COVID. However, I was reassured my tumour was no longer life threatening, so it was safe to wait a little longer. Honda had now settled on a closing date for operations in the UK, and it was clearly obvious I wasn’t going to be back on my feet and able to resume my normal role before that time.
They did me a kindness by offering me early redundancy, so I could spend some time with my family before having this major surgery. I was extremely resistant at first. My anxiety and paranoia convinced me that I was being screwed over, and cheated out of 6 months of pay (no one was going to employ me whilst I was waiting for surgery so it felt like another kick in the teeth).
I eventually came round to the idea, accepted the redundancy and sat and waited for the surgery appointment. It finally came through, scheduled for 7th June 2021. A 15 and a half hour Retrosigmoid/Translabyrinth procedure. This dual approach surgery had the intention of taking away as much of the tumour as possible to try and kill it off once and for all. I was told they were going to attack my tumour with aggression to remove as much as possible.
I was told to expect some level of damage to my facial nerve. I accepted this as one of the blood sacrifices I would have to make, as payment for a better quality of life. Moving forward, I was prepared for this, and as a way of taking complete ownership of it I was going to buy and wear a phantom of the opera mask. The only problem with this plan was that the phantom of the opera was disfigured on the right side of his face, I was going to have potential facial paralysis on my left side, so would have to get a mask custom made, which of course I would have done.
The other certain loss from this surgery would be the hearing in my left ear as the “Translab” part of this procedure is to literally drill a route to the tumour straight through the inner ear, destroying the functionality of the ear, including the severing of the hearing nerve along with my damaged balance nerve.
The surgery date finally arrived and all went to plan. I was so used to going in for surgery now, I didn’t have any of the associated reservations or anxiety. Considering how much anxiety had infiltrated almost every other aspect of my life, it’s really surprising how calm I was. I went into this surgery with genuine optimism and hope for the future. Although this surgery was by far the biggest to date, I really felt this one was the key to us getting back to where we were before my diagnosis.
I will never stop being surprised by how quickly time flies whilst under general anesthetic. You close your eyes and open them in what feels like a few minutes and it’s all over. I remember coming round in the recovery room, instantly completing a full body scan; fingers, toes, arms, legs… All working? Yes, check. Eyes, check. Face, omg yes, check!! Hearing, how? But yes, check!! My hearing had actually gone but in that moment I genuinely couldn’t tell. I was in complete shock and so happy that I started laughing – and quite loudly.
I remember the doctors and nurses at the end of my bed commenting on my laughter, I have no idea what I said to them, but whatever it was made them laugh. I was moved onto the ward in ICU where I started my recovery really well, sitting up and eating some food within a couple of hours after coming round. I had responded so well that within 6 hours of waking up I was being transferred out of ICU to the neuro ward.
It was planned that I’d be in ICU for 48 hours so the fact that being moved was even being considered so quickly gave me a huge boost, and immense hope that I was going to bounce back quickly. Michaela came to visit me in the ICU as they were planning to move me. Unfortunately the poor chap opposite me wasn’t in a good way and had reached the end of his battle.
The ICU went into lockdown so he could have his last rights read, and so he could pass in peace and with dignity. Me and Michaela were held in stunned silence, not saying a word but both feeling the gravity of this situation, knowing how close we have been on multiple occasions to this situation being our reality.
There have been so many profound moments throughout our journey but this one stands out as one of the most significant for me. It was in this moment I truly realised how fragile life is, how close I’d come to losing my life, and how I wouldn’t allow myself to take it for granted anymore. I’d spent years abusing myself and focusing on things that in the grand scheme of things really don’t matter. Witnessing this poor man’s passing made me lose my fear of death. Although it was sad that he had died, it was so peaceful and so respectful. We remained in the ICU whilst all the necessary formalities were carried out.
I was taken up to the Neuro ward and given a private side room. I was a little disappointed as during my last stay I was on one of the main wards and met some amazing people. I think having people to talk to helps massively. It stems the boredom, and helps occupy your mind which I found kept my mental health in check. The psychological effects of this journey had become my biggest battle front and I was determined not to allow my demons to take control of this situation.
I was expected to be in hospital for 10 days to recover but I felt I was good to go home even before being transferred to the ward from ICU. There was no way I was staying cooped up in that room for 10 days, I needed to get out and get back to reality.
As soon as I could, I was up and walking about, doing all I could to prove my capabilities and show I was strong enough to go home. Surprisingly, for the first time since before my first surgery I wasn’t walking like I’d drunk 10 pints of beer. The severing of my damaged vestibular nerve had given me most of my balance back. The one good nerve on my right side had compensated for the total loss of the damaged one on my left. I had forgotten what walking in a straight line felt like, but I’d probably still fail a police sobriety test if given one – and not for being drunk. It was a game-changing improvement, one that was set to improve every aspect of mine and my family’s lives.
After only 5 days, my consultant, doctors and nurses were all satisfied that I’d recovered sufficiently to go home. A whole 5 days earlier than expected! On this occasion I was so desperate to get back to my family and just live my life. My new ability to walk without a wobble, along with my desperation to be with Michaela and our babies inspired me to push forward and improve myself as quickly as possible.
I was advised to rest and expect to be off work for up to 3 months. Nope, not having that. I’ve got life to be getting on with and a new job to secure. My mortgage wasn’t going to pay itself! Four weeks to the day of my surgery I threw myself into a 3 hour interview process for a senior manager role within a pharmaceutical distribution business. I was offered the job on the spot and started exactly 3 weeks later, 7 weeks post op and well before expected, It was also probably well before I should have.
I was so determined to prove to myself and everyone around me that I was still capable that I pushed myself too hard. So hard, that after a few weeks I started suffering. I had almost constant headaches, my anxiety had taken the biggest grip on me yet and I was suffering really badly with fatigue. I started to have to take some time off, which at first wasn’t an issue. I’d been completely open and honest about my condition and what I’d been through and that I was still very much in the recovery process and that may lead to me needing some time off sick. Unfortunately this position, although a senior management position, didn’t come with the normal benefits expected of this level. No contracted sick pay and a basic holiday package.
My openness, and willingness to share my journey was seen as a huge asset and a source of inspiration to the owners of the company. They couldn’t believe what I’d been through and how driven I was to pick myself up and make a difference. I was so grateful for their show of faith in me that I just wanted to do all I could to repay them for the opportunity. Unfortunately, that did lead to me pushing myself too hard which caused me to go backwards in my recovery and have to take time off.
After the first few occasions, they stopped supporting me financially which significantly affected my anxiety and overall mental health. I started going downhill rapidly but I also had no choice but to keep pushing forward. I was the main breadwinner and I needed to keep a roof over my family’s head and food on the table.
I would have found a more suitable job but I was waiting to start a course of radiotherapy. I felt like I was completely stuck, with no choice other than to persevere. We had no choice but to use loans and credit cards to help see us through but this was ultimately piling the pressure on. I justified this as short term pain for long term gain as when I had finish radiotherapy I had already decided I was finding a new job.
My radiotherapy was scheduled to start on the 1st February 2022. I struggled on through until we got close to that point, but then 2 weeks before I was set to begin this next test, tragedy struck.
My mum had a cardiac arrest and so began the most difficult and painful 12 days of my life. The ambulance crew managed to resuscitate her after the valiant CPR effort from my brothers. She was put into an induced coma to give her brain a chance to recover, but unfortunately the damage was too severe and on the 29th January 2022 we, as a family (me, my brothers and my sister along with her husband) stayed with her, held her with love and reassurance as the doctors turned her life support off. As she saw us into this world, we had the privilege of seeing her out of it. Needless to say we were all broken. Our mum, the biggest character in our world had gone.
Two days later I started radiotherapy – 30 sessions spread over 7 weeks. My only breaks were the weekends and my mum’s funeral. Each session was only about 20 minutes but either side of each session was an hour and 20 minute drive. I worked as much as I could but I was now fully burned out. I was emotionally, physically, mentally exhausted but I had to keep moving forward. My new moto had become “Just put one foot in front of the other and keep moving forward and eventually I’ll get where I need to be”. I repeated this to myself so much, I truly believed it and still embrace it to this day. It’s served me well and kept me focussed, giving me a goal without actually setting one.
By the end of my radiotherapy I was truly broken, completely shattered, and an anxious mess. However I needed to get back to work asap, as we were already in a significant financial crisis which was worsening by the day and only adding to our already overflowing plates. Something had to give and go our way soon surely? Thankfully it did.
I was approached by a company literally 10 minutes down the road from my house that wanted me to become their Operations Manager. Offering a ridiculously good salary. I had 2 quick fire interviews and as before I was completely honest about my situation. They guaranteed they’d support me (in hindsight I should have ensured that was written into the contract). They promised me the world and I jumped at the chance, thinking this was my ticket out of the really deep financial hole I was now in because of this journey.
Thinking our situation was about to improve we went on a fully deserved holiday to France, with a stop off at Disneyland. It was an unbelievable 2 weeks with my family. All the stress and trauma of the last 4 1/2 years temporarily melted away and we fully embraced the holiday life. It was utter bliss, especially knowing as soon as we got back I’d be starting a new job with a better work/life balance and most importantly, the promise of being well supported.
I made the same mistake as when I started my previous job and threw myself into it head first, full commitment with no reservations. I exceeded all expectations helping to propel the business operations to heights never experienced before. The problem was it came at a huge cost to my health. I really hadn’t learned from my past experiences. I burned out again and had to take some time off.
Again this was fine at first. They kept their word and looked after me, but after the third time, they suddenly stopped. This left me in the exact same place I was a year earlier, but now in more debt than ever – and with my mental health at an all-time low.
We’d booked a holiday earlier in the year, before I broke myself again. Somehow we reached that point in time, just in time. We had a great break in the sun until 4 days before we were due to come home. I’d been suffering quite bad headaches for a few days as we’d gone on a boat trip where we were jumping into the sea. When we arrived back at the hotel I was getting random streams of fluid coming out of my left nostril.
This panicked me as coupled with the headaches I thought this could have been a potential cerebral spinal fluid (CSF) leak. Maybe the water pressure on my head had broken the membrane when jumping off the boat. This continued throughout the day and the following morning, so I went to see the onsite doctor, who advised me to go to the local hospital to see the Neurologist.
I was put in an ambulance and off I went. When I got there the neurologist wasn’t there so I was sent to the next closest hospital, another 1 and half hours further inland. I saw the neurologist who confirmed that the fluid was just sea water that had got stuck in my sinuses, how stupid did I feel! He then proceeded to examine my shunt and tried telling me it was positioned incorrectly and I needed it removing and replacing. He said I’d be staying there for 2 to 3 weeks to have it done. I politely declined and asked to leave.
I was about 2 1/2 hours away from the holiday resort so after a very expensive taxi back, I tried to enjoy our last few days, still in pain but safe in the knowledge that it wasn’t due to a CSF leak. We arrived home, and I contacted the neuro team at the JR who advised I go in for a check up. That check up lead to a 3 day stay and procedure number 13, a second inter cranial pressure monitor. This time around It was done under general anaesthetic, so I wasn’t subjected to the torture of having to feel my skull being drilled. Off the back of the ICP I had my settings adjusted and there have been no issues with my head (physically) since. Long may that continue. Mentally however, is a completely different story.
I went back to work a couple of days after leaving hospital to be told I wouldn’t be getting any support and that they feel they’ve done more than enough for me. Of course it was completely irrelevant that my work had facilitated a 35% growth in the business year on year.
Now that the reality of my situation had hit home and that they’d gotten what they needed from me, I was very much ostracized. My opinions no longer mattered, nothing I did was good enough and I was constantly made to feel like me and my team were falling short (even when we were clearly outperforming the previous 20 years of the company’s life).
I had become an inconvenience to the managing director, one which he didn’t want the hassle to manage, so I was pushed and micromanaged to the point of having a full mental breakdown.
I left that company just before Christmas 2023. Although it was one of the most stressful times of my life, being treated with utter contempt, with zero empathy for my situation by a complete narcissist, leaving was the best thing that could happen. I was driven to the point of having suicidal thoughts, and only god knows what would have happened if I’d stayed! I’d never been made to feel as useless and undervalued in my entire life.
Pre surgery Nick would have shrugged this off and would have moved on without a care in the world, such was my level of arrogance back then. But the post-surgery Nick is far more thoughtful, a million times less arrogant and far more in touch with my feelings. I’ve become an empath, and in my opinion a much better person for the life experience I’ve gained.
2024 had been a year of self-acceptance. Reflecting upon this traumatic journey I’ve dragged my family through and putting strategies in place to help manage both mine and Michaela’s mental health, as well as ensuring both of our kids didn’t suffer as a result of what we’ve been through.
I completely changed my career path, taking a huge step backwards to reduce the pressure and as a result the stress. I did make some really stupid decisions early in the year, decisions that certainly haven’t helped our finances but they were made with the best intentions and as a direct result of my mental state. I needed to take action to fix that aspect.
I’d previously had a good conversation with Sara Crosland from the Beyond Recovery Project, about the impact our journeys have on our mental health and how I don’t feel we’re given anywhere near enough mental health support from our healthcare providers. I feel this side of it is very much overlooked. To be honest support in general is very limited, hence the importance of charity support but there’s still only so much they can do.
Sara contacted me to ask if I’d like some counselling through The Beyond Recovery Project. I was so grateful and happily accepted. Getting counselling through the NHS takes up to a year and I didn’t have the money to get private counselling as I was now in substantial debt, because of the need to find a way of supporting my family through this journey. This was a true godsend.
I had 12 sessions with the amazing Stacey, where we spoke about everything from my childhood all the way up to present day, leaving no stone unturned. I learnt more about myself in those 12 sessions than my previous 41 years. Coming to terms with all of my life’s traumas, accepting them for what they are and importantly for the impact they had on shaping me as a person. This has been the biggest “healing” factor for my mental wounds.
Today I am left with some very impressive physical scars all over my head from all of my surgeries. I wear every one of them with pride as they tell a story of survival against the odds. A visible sign that we have the power to endure. I mentioned earlier that I wouldn’t change things. I stand by that. Even though what I’ve been through has been the challenge of a lifetime, extremely difficult to navigate, excruciatingly painful and given me a lot of physical restrictions, it’s made me a much better person. I’m more empathetic, loving and caring. It’s opened my eyes to reality, I have a deep appreciation for what’s actually important in life and what it is to live it. I mean really live it. Live, laugh, love. Spend times with your loved ones, enjoy their love. Find a passion and don’t let it go.
My journey is ongoing and will be for the rest of my life as I still have a sizeable tumour in my head, and I also now have hydrocephalus, but I will never let it hold me back. It’s taken enough from me over the last 6 years but I will now take all of that back by accepting and owning this, wearing my scars with pride – both the visible and mental. This is MY journey and I am grateful for that.
My hope is, if you are going through something similar, my story can give you some inspiration to face your battle head on with a positive mindset – even if it’s fake – with the knowledge that you can and will get through this. If I can provide hope to just one person and help them on their journey, then I would consider my suffering worth it.
“Just keep putting one foot in front of the other and keep moving forward, you will soon find yourself where you want to be”.
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