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Rod’s Story: Tabitha the Tumour!

SO… Around 2009 I was a professional dancer. I lived a pretty normal life, I was fit and healthy, I used the gym 2-3 times a week and my diet was fairly good.
I can never remember the exact day that my life started to change but I gradually began to suffer from headaches, at first just a dull ache that would make me feel tired.

At first the headaches would come and go.
I noticed my lifestyle started to change, my personality was changing. I was always FUN Rod, loved to laugh, go out, see friends, party but I was quickly becoming more of a hermit, I even considered buying a small dog to keep me company…. (I’m allergic to dogs) !

With the headaches worsening and my doctor putting it down to migraines I decided I had to look at my career, I couldn’t continue to get up and throw myself around dancing since some days it was just too painful, at the same time I couldn’t imagine myself sat at a desk, I was about to give up what I loved doing and not through choice so my next job had to be something I could be passionate about.

In my life as a commercial dancer, I met new people everyday and I kept myself fit so with that in mind I thought, Personal Trainer?
I soon applied for a course in personal training and got right into it. I gained my qualification and got my first job in a gym…… WHAT HAVE I DONE, was my first thought, I hated it. I wanted to personal train people but instead found myself trying to be a salesman…. with a very bad headache.

With life progressively getting worse, I hated my job and my headache was pretty much everyday, my trips to the doctor increased.
I was referred to ENT (ear nose & throat) but of course when it comes to the NHS the waitlist is long.

I probably waited about a month to have a CT scan of my sinus wall, now I’m not a doctor but it baffles me to this day why they only scanned the front of my head, I was in the machine, it would have be so easy….
Another 4 weeks go by and I get the results of the scan. The results showed I had a deviated septum, I already knew this from my slightly squint nose. They offered to fix this but said its a painful operation and probably wasn’t the cause of my headaches. No thanks I said!

My painful, boring life continued, I’m now using a sinus wash daily to try to clear my head and I’ve been back at the doctors who finally decide to refer me to a neurologist…… so I’m back on the waitlist.

By now, my PT business has grown slightly but I was finding it hard to deliver decent sessions. If I bent over to pick up a weight I would get this sudden surge of pain to the front of my head, I later learnt that this is known as (inter-cranial pressure) which is a warning sign!
I tried to remain positive, thinking I’m finally going to see an expert everything will be fine but by now the headaches were pretty much constant and becoming unbearable, no position was comfortable.

One incident happened when I went to bed after finishing work early on a Friday afternoon, I lay in my bed but couldn’t sleep, I would get up every now and then to take more pain killers (by now I was taking up to 8 pain killers a day) which I was very much aware was terrible for my stomach but I was in a no win situation. Saturday night came, I still hadn’t slept, I was in crippling pain and extremely agitated.

I called my parents in Scotland and I was in tears, now this was bad, I left home at 16 fully independent and never wanted to worry my parents so they knew I really wasn’t well.
I couldn’t move by now so my mum said stop feeling bad Rod just call a bloody ambulance!

I did just that, an ambulance and my best friend (my rock) arrived and took me to hospital.

Now you would think the story ends here but I’m now sat in A&E on a Saturday night in London!! I’m given 2 codine tablets just to add to the self medicating I’ve already been doing.
The headache eased slightly and I was given a letter to give to my doctor for a referral for an “EMERGENCY MRI SCAN”

I’m still waiting for that emergency scan!

My appointment with the neurologist was approaching so there was still hope.
By now I’m attending an osteopath because I’m willing to try anything to help ease the pain.
I’m still doped up on painkillers, working as a PT but asking my clients to pick up the weights.
My dance career is as good as dead since my last job on Gullivers Travels the movie I could barely run across the set when asked to.
I’ve gone on and on about this headache for over a year so much so that my friends think I’m a hypochondriac and it’s “all in my head” …. wasn’t it just!

My appointment with the neurologist has arrived, phew. I’ve never been so excited. Here goes, I’m finally going to get some answers….
After a 20 minute appointment which consisted of, follow my pen, left right up down, then a test of my reflexes and neurological signs ummm hello I’m a dancer I’m bloody sharp and asking me to look left right up and down, I’m gonna do it with some style ha.

“Ok Mr Buchanan, I believe you are addicted to analgesic medicines and what started off as a normal headache you have made worse due to this addiction, I am going to prescribe a painkiller that will be kind to your stomach so you will be able to take these in your life to deal with these headaches”

As I write this paragraph the fury comes rushing back, if it hadn’t been for two student doctors in the room, there could have been a MURDER!
I refused to leave her office, I’ve waited over a year, I’m not being dramatic and I’m not addicted to painkillers.

“Mr Buchanan would you like me to arrange an MRI scan to put your mind at rest?” FINALLY

Back on the waitlist with a scan scheduled for 4 weeks time I’m hopeful but my health is going downhill.

Until now I have worked for about 17 months with this pain but it was beginning to cripple me. Week 3 before the scan I headed home after a client, I was on the tube walking through Green Park station when my legs became jelly and numb, I held onto the walls praying that I could just make it home without collapsing. I managed to get home and put myself to bed.

I’m 4 days away from the scan now, I attended an osteopath appointment, he couldn’t even touch my head, it was impossible,i was so tense and nothing was helping. I was going into spasm’s, I would seize from my upper back into my head and be stuck there for a minute or so.
My behaviour became more and more embarrassing, I was randomly being sick on the street.

DAY OF THE MRI SCAN!

It was a beautiful summer’s day in London, my appointment was at 9.30am but they are running late. I ask the receptionist how long it’s going to be since I have an acupuncture appointment booked later that morning.

I’m seen at 10am but not for an MRI scan, my dear neurologist friend had only booked at CT scan, anyway, picture taken and the nurse comes in.

We are just going to run a line of dye in your arm Rod *WARNING SIGN* A line of dye is usually only used when an in depth MRI scan is performed to highlight a clearer image, so I knew something is not right.
The line of dye goes in and another image taken, the smiley but clearly concerned nurse comes back in and advises me to sit in the corridor and a doctor will come and speak with me. I question this since I’m an outpatient but she advises that it’s “nice” to speak with a doctor on the day.

I take a seat outside and it turns into a comedy skit, a river of water starts flowing down the corridor, a builder has cut through a water main and I’m evacuated….. 30 minutes later and on the verge of a panic attack a doctor finds me and sits me down.
“Mr Buchanan we have found an obstruction on your brain”

Now you would think, that’s it, lights out! but for me it was a massive sigh of relief, I had waited 18 months for this news, deep down I always knew something was seriously wrong with me but when your friends and even a medical professional doubt you, you begin to doubt yourself.

I turned to the doctor and said “Ok what’s next? let’s deal with this. Survival instinct kicked in almost immediately.

I had 10 minutes to call my parents in Scotland and break this news to them before I was sent to A&E for a full body check.
Telling my parents was the hardest part, I lost my strength, I was so emotional on the phone I could hardly get my words out, knowing that I was breaking my wee mum’s heart was just devastating.

I broke the news and get myself together then tell my parents not to worry too much about rushing down to London, “its Friday I’m sure nothing will happen till Monday” Boy was I wrong!!

I have a full body check from two neurologists and an MRI scan of my whole body to check for other tumour’s, thankfully this was all clear.
I spent that night in St Thomas’s Hospital where my scan had taken place but was told I would be transferred to Kings College Hospital, who specialise in Neuro, first thing in the morning.

Off I trot in an ambulance in the morning and I’m admitted to my new home at King College Hospital.
I meet a neurosurgeon almost right away who sends me for another MRI scan before we discuss the plan of action, I quickly become a pin cushion, having needles stuck in me for various tests. My MRI results are delivered immediately by the neurosurgeon along with an entourage of men in white coats.
His words remain vivid in my head to this day. “Mr Buchanan we have to drain a substantial amount of fluid from your head, your brain is drowning in its own fluid and I’d say you were probably a week away from death if we don’t act immediately.”

By now, my parents had wasted no time and were en route to London but wouldn’t make it in time to see me before surgery, thankfully my best friend was by my side…to make fun out of my new fashion style, NHS gowns and bed socks, it was a strong look!
The first surgery was planned to drain fluid and if possible take a biopsy of the tumour however, they would enter through the front of my skull for the fluid but the tumour was at the back so this could prove difficult.

The surgery was partly successful they were able to drain some fluid but as thought the biopsy was too difficult.
I was still in the dark as to what type of tumour I had but I felt loads better the pressure in my head had lifted.

I was left to rest and welcome my parents, when I say welcome, I lay there dribbling and talking absolute nonsense but laughing due to the drugs.

Later that evening I have another meeting with the neurosurgeon to discuss what happens next. He brings along another gentleman who is known as Mr Bhangoo. Mr Bhangoo goes on to become my hero and lifesaver.
He was to take over my case from here and surgery to remove the tumour would be scheduled for one weeks time.
I had been put on steroids to decrease the inflammation on my brain and these needed time to work so it was a waiting game….or so I thought.

A couple of days past then I woke one night feeling worse than ever, it felt like someone was taking a saw and a hammer to my head, a scratching and banging feeling over my whole head and down the back of my neck and spine, no position was comfortable and I had uncontrollable vomiting.
I suffered for around 12 hours before doctors decided to scan me again, the outcome was the fluid had built up and there was a blockage, I would need surgery to remove the blockage and this time have an external drain fitted.

The slight problem was that I had been eating like a horse due to the steroids and before surgery I should be “nil by mouth” for 24 hours.
It was too urgent, the surgery had to be done, I pleaded and was made aware that I might be very sick afterwards but I didn’t care.

The second surgery was performed this time taking about 4 hours. Sure enough I was sick as a dog afterwards but I didn’t care I felt heaps better and now had a fetching accessory coming out the right side of my head.
A tube going into a bag by the side of my bed which soon got nicknamed my bag of Pinot Grigio!

The main surgery was now delayed due to my head undergoing another surgery and having a 2nd anaesthetic within a matter of days.

I held tight and believe it or not seemed to enjoy myself.
I haven’t touched on this yet but a major concern for me when I was admitted to hospital was the fact that I hadn’t had a “coming out” conversation with my parents. Now I’m going to be lying in a hospital bed surrounded by lots of mates who don’t necessarily sing Kylie constantly but who are comfortable with their sexuality and some have partners, I thought OMG what am I going to tell my mum and dad?
I decided quickly that at this stage it was irrelevant, I was too sick to care.
It soon became apparent that my parents had the same view. I lay in my hospital bed and I watched my parents and my friends bond, they looked after me and one another.

I had made a pact with my mum that neither of us would cry in front of each other and we stuck to it.
After visiting hours my friends would take my parents for dinner where they would laugh and cry together.

A week passed and it was time for the main surgery.
Before every surgery you basically have to sign your life away. I had my usual meeting with Mr Bhangoo who told me it would be a long procedure, possibly 12 hours, he had asked another neurosurgeon to come in on the surgery with him.

Along with many risks of the surgery that were highlighted I would also be left with a significant scar.
Mr Bhangoo asked if I had any questions to which I asked “If I survive, will my hair grow over the scar!”

Everyones face was a picture… that’s it Rod? that’s all you want to know?
I let the sensible adults in the room to ask some serious questions but I thought screw it if I die I die I wont have questions to ask but if I survive I want to know what state my head is going to be in 🙂

I was wheeled out of my room and taken down to surgery, my parents and best friend by my side, I remember holding my mums hand and when it was time to go into theatre I kept my smile and said, I’ll see you later mum.

I lay in theatre, whilst doctors hooked me up to all sorts of machines, I had conversations with them and we laughed and joked, I’m a firm believer in the positive, I didn’t want to be put to sleep having doubts in my mind, the survival instinct was stronger than ever, it was LETS DO THIS.
Ok Rod start counting down from 10……

12 hours later, I’M ALIVE! No wait am I? I can hear a nurse saying, oh I can’t find a pulse, the monitor was on my toe and you can’t get a pulse because I’m bloody freezing in here!!
I was alive and I slowly became more aware of my whereabouts.
I had spent about an hour in recovery and was ready to go to the high dependancy unit.

They took me to the lift and when those lift doors opened there stood my parents and bestie, mum looked exhausted haha.
You made it she said, I’m so proud of you, how are you feeling?
I kept repeating, “my mouth and my ankle hurt” What about your head Rod?

My head was heavy but I had no pain my lip was the size of a ballon from the tube that had been stuck down my throat and when I had been put to sleep I was then winched up and put in what I can only describe as a massage chair in which my ankle must have gotten trapped.

I was very uncomfortable, from all the padding around my head, I couldn’t really move much so I was given a shot of morphine and off I went zzzzzz.

During the night I had some fever spikes, there were concerns of infection, I was injected with some antibiotics to bring the fever down.
The next day I was taken for an MRI to check how successful the surgery had been but due to the sheer amount of drugs I had been pumped with I was in the scanner for only a few minutes and started to vomit all over myself.

I remember feeling so ashamed, its amazing, silly things like this and having to have a nurse wipe my butt after the toilet made me feel 10 times worse.

The results came back and everyone involved was super happy with the outcome, “it couldn’t have gone better” said Mr Bhangoo.

The surgeon who stood in on the surgery alongside Mr Bhangoo visited me a couple of days later by which time I was sat up in bed, he seemed amazed and went on to tell me he had been very concerned initially because cases Mr Bhangoo asks him to step in on don’t always have a positive outcome.

A few days pass and although I’m getting stronger I do still have my bag of Pinot Grigio coming out the side of my head.
It’s decided that I will have a ventricular shunt fitted, aka an internal drain, a device in my head with a tube attached to it is threaded down my neck, past my ribs and into my stomach.

This device controls any build up of fluid post surgery whilst the swelling in my head goes down.

My fourth and final surgery goes ahead as planned, it was a straight forward procedure but one that left me in a lot of pain. I woke up feeling like I had been in a car crash, another part of my head had been drilled, my stomach sliced to thread the tube down the right side of my body which was badly bruised.

It’s been a month since I was first admitted to hospital, 4 surgeries later, it was time to get me back on my feet.

A physiotherapist comes to see me, if I’m able to get out of bed and climb a small set of stairs then I’ll be discharged.
Bring it on I thought. Due to the steroids the muscles in my legs had basically disintegrated, I was a swollen head on two twigs! Although painful, I managed the stairs and was released that afternoon.

I spent the next six weeks at home recovering. Building muscles in my legs was the hardest part, I pushed myself hard, sometimes too hard. taking long walks then not sleeping for pains in my legs, it reminded me of “growing pains” I used to get when I was young.

My head healed nicely, what I wasn’t prepared for was the post traumatic stress of it all.
I was super paranoid about everything, I felt nervous just walking as I was scared I’d fall and bang my head, if I felt a little under the weather I automatically thought I was dying (dramatic I know).

After 6 weeks I was cleared to fly and my friends decided to take me to Mykonos for a week’s “recovery”
I landed on the island of Mykonos and the water works opened up, I hadn’t cried since the day of my diagnosis and now I couldn’t stop, it was embarrassing.
On my return to London I had a letter from my doctor offering me a 6 week course of cognitive behavioural therapy. Hesitant about any kind of therapy I reluctantly accepted the offer.

I did some strange things during those 6 weeks such as create a web of trust with a ball of wool and draw pictures of my family home with crayons but something was triggered, the tears stopped and I closed the door on tabitha the tumour.

In the end my tumour was benign but the size of a babies fist, a small piece was left in my head as it was situated next to my optic nerve and the risk of removing it and cutting the nerve which would have left me blind, was too high.

Two years post surgery the piece of tumour left behind had grown slightly so I received a treatment called “cyberknife” this is a radiation treatment that only targets the tumour, it worked a treat, killing off the blood vessels around the tumour stopping any further growth.

People often ask does this experience change your life? Easy answer, YES.

My willpower to fight and survive shocked me, at no point did I think I was going to die, at every stage my attitude was LETS DO THIS.
The experience made me look at my life, where I was, who was I, and where did I want to be.
My eyes had been opened by this experience and whilst everyone around me empathised I believed all of this has happened for a reason, its made me realise what a fighter I am and what Im capable of.

I no longer sweat the small stuff in the back of my mind there is a little voice telling me, I’ve been through a lot worse.
I can honestly say my days are filled with infectious laughter, I smile far more than I ever did and I love to see the people around me happy.

When situations get stressful I strive under pressure.
I was always a happy person but now, no matter how tired I am I get up and I look forward to life, I feel stronger and healthier than ever, my confidence has grown, I believe in myself and I push myself. There are no limits and no boundaries.

We get one chance in this life, I feel like I’ve had 2 so I’m riding it and there is no looking back! #bemorerod :p xx

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