A few months after my surgery, and i was recovering well. I received a letter from the hospital with an appointment to go and see my Oncologist. A few weeks later and I was sat in the waiting room. Absolutely terrified of what was about to be said. My head was just full of mind chatter and questions galore. My name was called and I was introduced to the most lovely woman. She explained who she was and what her job role was. She told me that she specialised in breast cancer but was given my case because the cancer i was carrying was so rare. She told me that it was time to start talking about the plan for treatment now that the surgery was out the way. She told me that Chemotherapy wasn’t an option as the cancer was immune to its treatment. I instantly felt a massive relief and a weight off my shoulders. Maybe i wasn’t going to lose my hair after all but i wasn’t entirely sure. She then started talking about treatments called “Proton Therapy” and “Photon Therapy”. Something I’d never heard of, and my the look on my mam and graddads face, they hadn’t heard of them either. She then proceeded to explain their aim. That they are both designed to hit the cancer cells down to the millimetre, rather than standard radio therapy that hits the area the cancer is in but not the tumour itself. Which meant that the side effects were a lot less and the possibility of damage to other organs in the process were minimised somewhat. Instantly i felt like this was the treatment for me, i wanted the best possible chance of prolonging my life for as long as possible and she told me that in order to do that, then this would be the treatment to do so. I remember asking her what she thought my life expectancy would be after treatment and she told me that she couldn’t put a time on anyones life but that she was confident that if i managed to be in remission for nine years then my chances of living a longer life would be increased. Nine years seemed so far away and in my mind i was convinced that i wouldn’t live that long. She told me she’d spent a long time talking to and coming up with a plan with many Oncologists and specialists up and down the country, most of which were working in Great Ormond Street Hospital in London. After explaining all about what the treatment did and how it worked, she then landed a massive “But” on me. “But, the treatment isn’t available in this country.” Wow. I wasn’t expecting that. I looked at my mam and granddad who looked at each other in complete shock. She told me that this treatment was available in Switzerland and America and that at that moment in time, she didn’t have a definite, as to which place i’d be going and that the decision really landed with me. She said that Switzerland would definitely take me sooner rather than later but that meant that i’d have to have all the metalwork removed from my spine and pelvis and i’d have to be laid flat on my stomach for 3 months while they conducted the treatment. I hadn’t even let her finish before i give her a loud, stern, “NO CHANCE”. Were they completely mad?
She then went on to tell me that America weren’t sure that the Proton and Photon treatment were actually suitable for the Chordoma bone cancer, as they had never actually tried it on anyone else before. However, they were willing to draw up a treatment plan without removing any of the metal work at all. The pro’s of having a cancer so rare. I was about to become a guinea pig. My oncologist said she’d get the wheels in motion and would get back to me as soon as everything was in place. A few months later, March 2010, we were all packed and ready to leave for Jacksonville, Florida. I remember the night before our flight, we were getting picked up to go to the airport in the early hours of the morning. I couldn’t sleep a wink, i spent the entire night laid in bed playing on my phone. I didn’t have a clue what i was letting myself in for. I didn’t have a clue where i was going, where we were going to live for three months, who we were going to live with and what was lying ahead for me. I was, and still am, absolutely petrified of flying, so i had to go and see my GP before hand and get a bottle of Valium to take before i went anywhere near the airport, let alone an aeroplane. I remember sitting in departures, feeling sick to my stomach and feeling like i was floating on air because of the medication. To me, they weren’t working at all. I couldn’t even concentrate on a conversation with my mam and granddad because i was looking outside at all the planes taking off and coming into land. I remember sweating profusely, shaking all over, and telling myself there was absolutely no chance i could possible get on that plane. Once we were called to board the flight the tears started. And they didn’t stop until i was up in the air. Squeezing my mams hand so tight that i stopped the blood circulation. Having a panic attack, not being able to breathe as the plane started taking off. Even writing this is making me feel exactly how i felt back then.
I think its time to move on!! We had to take 3 flights there and 3 flights home. Newcastle to Paris, Paris to Atlanta and then Atlanta to Florida. definitely one of the worst few days of my life. When we arrived we had to take a taxi to the Ronald McDonald House. A charity run, huge house, where families with sick children go to stay so they’re near their designated hospitals. I remember pulling up outside this huge house. Ringing the door bell and being met by a lovely lady who welcomed us in and told us to go and wait in the visitor’s room. The house was pin silent and so i assumed we were the only ones there. We were each given a pack of information, told to watch a short movie clip on the tv, given yellow bands that we each had to wear at all times, given the rules of the house (which may i add, were ridiculous. No one’s telling me i cant drink alcohol), then the key to our room. The lady pointed down the corridor and told us to take the ‘elevator’ and on that floor we will find our room number. It felt like we’d been walking for a good 15-20 minutes with our suitcases and hand luggage because the house was so big. Once we got to our room and opened the door i was even more shocked at how big and spacious our room was. There was two double beds and a single, a wardrobe, tv and stand, bedside tables and a reasonably sized bathroom with a huge work surface! I bagged one of the double rooms and so did my mam, leaving poor granddad in the single bed, not that he minded one bit though. After dumping our things in the room, we were so hungry, thirsty and tired, but it was the middle of the day, so we had to battle the jet lag or we wouldn’t sleep that night, we made our way down to the kitchen for food. We were told in the visitors rooms that companies, families, scouts etc all donated food to the house for everyone to eat. But at the time i was vegetarian, so i was basically left with bread (that tastes so weird, it’s sweet!), and their take on “butter”. But i didn’t mind, it was after all, donated. Whilst we were sat at the table, we heard the front door go and a load of commotion coming from the hallway. The kitchen was right next to the main lobby. The talking and sound of children giggling got louder as they got closer. I saw this little girl, no older than four, walking up the hallway with a bandana on her head, a tube coming from her nose which was secured onto her face, and she was wheeling a long a drip stand with fluid attached. She had the biggest smile i’d ever seen, on her face, and she came up to me and said hello, waved and giggled away to herself. I could feel a massive lump in my throat and asked my mam for the room key. I gave no explanation, left my food and went upstairs, crying all the way to the room. When i got inside it felt like i let every single emotion out that id been feeling over the past year. I couldn’t stop thinking about what that little girl must be going through and yet here i was, visibly okay, but feeling like im going through hell. Yet there she is, taking everything in her stride, not a care in the world, going through chemo, loosing her hair, going through excruciating pain and so many more vicious side effects that run parallel with chemotherapy. But that little girl was smiling, even when she had nothing to smile about. I knew i had to get my shit together. That i had to compose myself because i was going to have to live in a house with children who were really sick. And the thought of that terrified me. I just wanted to take it all away from them. I’d rather their diseases be passed onto me and they be able to live a normal, happy, healthy life. That day will stay with me for the rest of my life. I’ll always remember her, who i eventually got to know as little Cora.
Treatment didn’t start until i’d been at the house for approximately two weeks. We pulled up outside the Florida Proton Therapy Institute, and i remember the weather was scorching hot. Entering the building, i was completely blown away by its size (americans have everything 10 times the size what we do). I registered at the desk, was given a pack that i had to wear at all times around my neck whilst i was inside the institute. We were then shown round, shown all the machines, where i’d be going to treatment, the machine and bed i’d be lying on etc. Looking at that machine, i was absolutely terrified. I was claustrophobia and this machine was basically, a metal slab, in the air with two huge rotary machines going round and round and round you whilst being inches from your body. Sounds scary doesn’t it? But it wasn’t too bad once you got used to it. I was told they had to make a mould out of my body, pin point actual tattoo’s onto my body so they knew that each time they performed treatment, that it was in the exact place, and hit the cells with minimal precision. The mould was like lying on a bed of cold, gloopy, wet, plasticine. Once they’d taken the shape of my body, marked it all out with different coloured pens they then drew a huge map on my stomach, back and both of my sides in permanent marker. Which everyday i had to keep tracing over so that it didn’t fade. They then screwed the hardened mould onto the silver slab which i then lay on then they placed 3 large moulds on top of me and screwed them into the bed also. Basically i couldn’t move any part of my body until the treatment was over. Each session lasted anything from 45 minutes to 1 hour and 30 minutes, depending on the machine. I got used to it after a while but every single time i lay there, i ended up crying. Thinking of everything that had gone on. The amount of pain i was in lying here and that there was nothing anyone could do about it. I felt claustrophobic, i kept thinking about all my friends and my nanna back home and how i just wished this was over already. I had treatment every single day, except weekends, unless the machine had broken down earlier in the week, which then left me behind one treatment.
We ended up meeting three other families from the UK who were also living in the house with us. These were; the Blakemores; Jayne, Simon and their son Tom. The Hensby’s; Julie & baby Jay. And then the Mitchells; Suzy & Taylor. I can honestly say that if i hadn’t met these 3 amazing families i honestly don’t think id have coped well at all. Especially turning 18 while we were there and not being able to go out and have a drink with my friends. I wasn’t even allowed to drink in the house, nor was i allowed to go to a pub and sit and get wasted, with the legal age being 21 in America. However, that doesn’t mean to say that i didn’t sneak drink up into the room despite being told by my oncologist, not to drink during therapy. Neither does it mean that Simon didnt regularly bring me bottles of vodka up hidden in the inside of his jacket. Legend!
On weekends we went shopping, went to the beach, visited lakes, spent time together doing things in the house itself, sunbathing outside, we made a habit of us all walking down to the town and having dinner together, plus drinks of course. We had the best time considering the circumstances, and Tom & Taylor who weren’t that much younger than me, were truly inspiring to me from the start. You never saw them down, or complaining about anything. Always with big beaming smiles on their faces or laughing hysterically. But unfortunately they both lost their battle not long after we came home from America. I think about them every single day. Their families are truly amazing, and i have the utmost respect for them all. How they’re able to carry on with their lives, but still keeping their sons at the forefront of the family is truly humbling. All three families have a special place in my heart, and they always will.
One thing i forgot to mention was, before they started treatment on me, they set me up with a ‘Social Worker’ to make sure i was doing okay and to have someone to explain things if i didn’t understand, she organised trips out with discounts, helped us with taxi fares if the RMH van wasn’t available etc. And one day she took me into a room, and started explaining about the treatment and what it entailed etc. I was however, fully aware of everything and i completely understood what was going to happen. But one thing i wasnt prepared for was what she asked me next. She explained that because the tumour was in the lower part of my spine, that the areas around it will be effected by the Proton and Photon beam therapy. This means that i could have problems with my stomach, part of my bowel could die off and then they’d have to operate to remove it, my kidneys could be effected, but most of all, my ovaries and womb will be massively effected because it’s in the exact spot they need to be. She then said that because of this, i have the option to have a surgery to remove my eggs, have them frozen and shipped back to the UK for the future if i ever want to have kids, because the likelihood that ill ever be able to conceive my own children, let alone carry my own child, would be extremely small. She told me i had two weeks to decide what i wanted to do so that she could get the wheels in motion to have the procedure done. However, after agonising over and over again, i made the painstaking decision not to have the procedure done. I was 18, a lesbian and had absolutely zero desire to have children of my own at that very precise moment. I thought that because i felt like that then, that i’d never get the maternal instinct so what would be the point in putting myself through something that isn’t going to make any relevance in my life when im older. Oh how wrong i was to have made that descision. Something ill live to regret all my life if im unable to have my own children when the time comes. I already regret that descision massively. But i believe everything happens for a reason, and if im supposed to have my own children, it will happen regardless. If not, there’s always adoption.
The weeks and months flew by after the first 2-3 weeks. And before we knew it, it was time to leave Florida, and i couldn’t wait!!! I was going back home to my friends and i was going to be able to see my nanna again. Despite having to get three flights home again, the journey home was a lot easier to cope with than the journey there. I think it was because i knew i was going back home and the excitement took over.
The months following treatment consisted of a lot of appointments to see my oncologist. Making sure i had no side effects, no burns to my skin caused by the radiation etc. The months in between were spent with myself coming to terms with my mobility restrictions, realising a wheelchair will become a massive part in my life, taking ridiculous amounts of tablets and morphine every single day, coping with the realisation that i can’t do what all my friends were doing, and they were all dropping like flies. I had zero support. No one i could talk to comfortably. No one who understood any of it. Not even my GP. I didn’t realise it then, but there was an underlying illness eating away at my brain, infecting every single aspect of my life, thought process, goals and ambitions, feelings and emotions. What i didn’t realise then, was that i was starting to suffer from depression and anxiety. Things i was once able to do, taken away from me. My confidence started slipping, i couldn’t talk openly to anyone anymore. What was happening to me? Stupidly i just put it down to not socializing much, not being able to things physically and i put it down to me just being stupid. Massive mistake to make.

(PHOTOS TO BE UPLOADED AT A LATER DATE)

I woke up that Friday morning, got myself up out of bed, at a snail’s pace, super excited. I was going home today and nobody could say otherwise. I sat in the chair waiting for my mam to wake up, then we had breakfast and watched morning TV together. Throughout the morning my mam was trying her best to get me to change my mind about going home. Asking if i would be able to cope because i was still so poorly. But i was stubborn, i always have been, and i had already made my mind up. No way was i going to let myself down. I remember having a massive smile on my face from the minute i woke up, laughing and making jokes with every member of staff that came into my room, even the cleaners. I felt like i was on cloud nine, and absolutely nothing could dampen my mood.
Once we had gotten washed and dressed for the day (a clean set of pyjamas for me), my mam slowly started packing away all of our stuff. We had been in the Royal Victoria Infirmary now for four weeks, so you can imagine the amount of stuff we had accumulated between us in that time. I wasn’t able to help pack so i took it upon myself to start putting away all of the cards, gifts, balloons and teddies I’d been bought from so many people. As i was putting them away i stopped to read each and every one of my cards again. I received cards from people i didn’t even know, people i’d never even met. The nurses from down in recovery and Intensive Care had bought cards, presents and teddies for me. Each and every one of them saying how worried they had been about me and that they couldn’t stop thinking about me since i left their care. My mam then told me that those same nurses had come up on their dinner break and came in on their days off just to pop in and make sure i was okay in the early days of recovery. One had said she’d never seen someone in such a state as i had been and that’s why she had to come and see me. So as you can imagine, i was sat in tears reading card after card. Letters attached inside of cards from my mams friends at work (who i’d never met), wishing me well and giving me advice on how to position yourself comfortably after spinal surgery. So many thoughtful people.
I remember finishing going through them and realising that i had only gotten cards from two of my friends, and the smile slowly came away from my face. Not that i expected anything of course, but even just a few words scribbled on the back of an envelope would have been more than enough, just so i knew they were at least thinking of me. I asked my mam if any of my “friends” had been in contact with her (because I’d given every one of them her number before hand), and she no, just the people i had cards off. I knew i was going to have to face the reality of loosing my ‘so called friends’, but I’d been pushing that to the back of my mind. Since i was diagnosed just weeks before, i could already see a slide in friendships. Friendships that meant so very much to me. The friends who i’d grown up with since Infant School started to drift away and i remember trying to convince myself that i was just being stupid and that once i was home everything would go back to normal. I remember making up excuses for them to my mam, saying things like, “but none of them drive and its a long way to come on a bus so i don’t blame them”, but who was i trying to convince? My mam or myself?
Before we knew it, it was the afternoon and the physiotherapists were standing at my door.For the first time that week i was actually excited to get going. Because today i was going to attempt to walk for the first time. I knew that in order to get home, i had to walk from my bed to the door (a good 5 feet) then from the door, right down to the bottom of the ward and back (what felt like 5 mile), and then, go up and down a flight of stairs unaided. I was so ready to do this.
I pulled myself up off the bed, only holding onto a Zimmer frame for support. Took a deep breath, and slowly started to shuffle my way to the door, trying to disguise my face and not show the physio’s that i was actually in excruciating pain. I’d done it! I’d somehow made it to the door!
Now to walk to the bottom of the ward unaided, “come on Jenna, you can do this”, i remember saying to myself. “You’re one step closer to getting home”, and sure enough, i was on my way down the corridor, on my own, with only my Zimmer frame for support. Tears streaming down my face. Crying with so much happiness that i was able to walk again, stunned at what my body was physically capable of doing, even after being through absolute hell and back, but at the same time, letting out the emotion of being in that much pain i just wanted to stop. But thankfully, I’m too stubborn, too strong-minded and adamant to prove to everyone that i can do this, i will do this and i don’t need anyone to help me.
Tackling the stairs was by far the hardest one out of them all, the pain was so intense that i was crying hysterically, shouting out in pain and trying to catch my breath with every step i took. But i kept pushing myself, up and down, stair after stair. Clinging onto the banister for dear life, i was gripping so hard that i felt like i was going to snap it in half. But I’d done it! I was in a state of shock. I couldn’t believe it. And if im completely honest, i don’t think any of the nurses could believe it either, or my mam! Luckily i was allowed to be pushed back to my bed in a wheelchair, that was definitely enough exercise for the month, nevermind the day. The Physiotherapists signed me off, filled in all the paperwork and went and told the sister of the ward that i was allowed to go home. I was ready to leave there and then, but i didn’t realise that it didn’t work like that, and we sat there for another five or six hours. I think i was so agitated by the first 10 minutes, so how i sat there for hours i don’t know. Then finally my granddad showed up, and him and my mam started taking the hordes of bags downstairs to the car. My medication was ready and on the ward from pharmacy and i was waiting for the nurse to print out my discharge letter for my GP.
I was sat in the wheelchair ready to be taken down to my granddad’s car when they returned. I heard the main ward doors go and I obviously assumed it was my mam and granddad. But then, in walked two paramedics with a stretcher. I was so confused that i laughed and told them they were in the wrong room, that was, until he looked at the piece of paper in his hand and said my name. They told me that it wasn’t safe for me to travel home in a car as i wouldn’t be able to sit properly or have a seatbelt resting on my stomach. They said the only way i was going to be able to go home was by ambulance. I obviously didn’t care one bit. I’d have travelled by horse and bloody cart so long as it got me home!
The drive home was extremely uncomfortable. I remember lying there, my head facing towards the wall of the ambulance, away from my mam and the paramedic, crying silently to myself. Every single emotion imaginable came flooding into my mind. All i could think about was everything that I’d gone through in the past four weeks. Questions running round and round inside my head. Why me? What did i do to deserve this? Is this the last time I’m going to need surgery? What if i can’t manage at home? …and yet again, i didn’t have the answers, and i knew no one else had them either.
The next thing i knew, i was being woken up by the paramedic. I was home, actually home! They wheeled me out on the stretcher, carried me into my house, into the living room and slid me onto, what is going to be my bed for the duration of my recovery. I couldn’t wipe the smile off my face. My house was full of unopened cards and presents, as if they were waiting for my return. The fridge was jam-packed with all my favourite snacks and goodies, and there were balloons and banners all over the house. I honestly couldn’t stop smiling, and i had only one person to thank for all of that – the most amazing mam on the planet!
The days and weeks that followed my return home, were some of the most degrading and embarrassing times of my life. I was sleeping, in my sitting room, on a single bed, plonked in the corner of the room. And because i couldn’t manage the two flights of stairs to get to the bathroom, i had no choice but to use a commode. And honestly, shitting in the middle of the sitting room into a round plastic bowl, was definitely one of the most strangest things ive ever done in my entire life!! But then, watching my mam carry the bowl full of shite upstairs, without a lid on, was one of the most hilarious things ive ever seen! She gagged and borked every time and I cried laughing.
As each day passed i could feel my body getting stronger and stronger. I had to wear a boot on my left leg 24/7, which was an absolute nightmare because the inside of it was made of wool and it got so hot and itchy and i physically couldn’t bend down to scratch it. Nightmare!
Despite my sitting room looking like a care home for the elderly, I was in high spirits. I knew i could do this! Don’t get me wrong, there were days where i felt like giving up. I remember being propped up one night against the headboard with a mountain of pillows, watching TV, in one of my “I just cant do this anymore” moods, and i looked to the left, and on the bedside table sat my huge bag of tablets. “They’re right there, they can take away all of your pain and suffering” i told myself. “It wouldn’t take long for it all to just disappear…”. And many times i thought like that. But what kept me going and what kept me here, was not only my family and friends, but the fact i had a disease to fight. I had already started and i couldn’t give up now. Failure was never an option for me no matter what. And i most certainly wasn’t a coward. I was going to fight this head on with every single ounce of determination i had. What i didn’t prepare myself for, was how emotionally and mentally draining the entire journey was going to be. But i guess when you’re diagnosed with Cancer, you automatically go on a rollercoaster ride of emotions, thoughts and feelings anyway. But they’re all based on someone elses perception. Something you’ve heard on the news, read in a newspaper, on a TV advertisement, someone’s story, a family member, a friend, a work colleague. And they’re always negative stories. When was the last time you saw a Cancer advert/post/article that was positive? It’s extremely rare, yet there as so so many people who fight this disease and win! And they’re still winning years down the line, and most have outdone their Oncologists expectations. Why, when we hear the word CANCER do we immediately associate it with death? I know that I’d much rather look at my diagnosis as a positive rather than a negative. Keeping people’s spirits up. Tell them how many people have survived their type of cancer, rather than how many people have died and what their life expectancy is going to be from now on. Because that is instantly telling that person not to fight, because what’s the point? If they don’t stand much of a chance? And who on Earth can put a time on a life anyway? A lot of people daren’t say the word ‘Cancer’ in front of someone who’s been diagnosed. For fear they may upset them. But why should we pussy foot around that six letter word? It already holds so much power, so why give it more by not speaking its name. I’m sure as hell not scared of it. Despite the fact that the cancer i was diagnosed with (Chordoma Bone Cancer) has no cure and will come back at some point in my life (so ive been told). Chordoma victims have a life expectancy of 7 to 10 years, but yet, I’m in my 10th year now, and luckily (touch wood), there have been no signs of reoccurrence whatsoever. I’m determined to be the first statistic who lives a long, healthy life without any reoccurrence in the future. I CAN do this and i WILL do this. Because i believe that having faith in yourself to fight whatever comes your way, is more powerful than any Cancer cell.

Waking up in intensive care after that surgery was one of the most terrifying experiences of my entire life. Finding out i was in ITU by over hearing the nurses talking. Not knowing just how seriously poorly i was because no one would tell me what was going on, not even my family. But I don’t blame them, because when i look back now i was still just a kid. A naive, confused teenager who had absolutely no knowledge of anything medical or what was even happening to her. I had never been in hospital before and if im completely honest, id have worried myself sick if they had have told me the truth.
Coming round from the anesthetic with excruciating pain in my back but not in my stomach or left leg was so confusing and i obviously started to panic with fear. I remember shouting “why doesn’t my belly and leg hurt” and instead of being given an answer, i was hushed and told to keep my oxygen mask on and that the surgeon would come round later to explain everything to me. That just made me worse. I was petrified to start with, and now i was even more anxious and scared. Why were they keeping me in the dark? What had gone wrong through the procedure? Is my life in these doctors and nurses hands? What’s going to happen next? So many things flying round inside my head. I just remember crying uncontrollably to my mam, because i knew something was seriously wrong. She cried with me too, stroking and kissing my head and telling me everything was going to be okay, to stop crying, calm down and try to get some rest. I don’t know how she managed to stay calm and keep herself together for my sake, when she didn’t have a clue why the surgery wasn’t done either. I bet there were a thousand and one questions spinning round inside her head too!
I remember feeling like my body didn’t exist, that i was just a head at the top of my bed. I remember seeing the black cat from “Whinny The Witch”, a program i used to watch as a kid, crawling across the ceiling, and being adamant that the balloon attached to the bottom of my bed, was in fact an 8 foot man with a massive head! Needless to say those were some crazy drugs being pumped into my system! I had to have two nurses at my bedside at all times and apparently i kept them and my mam highly entertained for the 3 days i was in there. If only i could have watched that part back!
The next thing i remember was waking up to the sound of my surgeons voice, opening my eyes and seeing him stood, at the side of my bed, still in his scrubs from theatre. I couldn’t tell you exactly what he said to me, because the only words that stood out from what he was saying, went something along the lines of, “its taken us 9 hours just to open you up from the back and remove the tumor and previous metal work, your body was giving us all the signs on the monitors telling us that it had had enough, you’ve lost a significant amount of blood and were giving up on the operating table. We knew you were telling us that you’d had enough so we had to stitch you up as quickly as possible, give you two blood transfusions and get you up to Intensive Care as quickly as possible. So we’re going to have to take you back down to theatre in two days time, go back in through your spine and go through your stomach and leg then too.”, As soon as he said those words i started to cry hysterically, and so did my mam. She was leaning over my bed and cuddling into me, trying to calm me down. Why was this happening to me? What had i done to deserve this? What if i didn’t make it out of intensive care? And if i did, what if i died during theatre in 2 days time? I was terrified, and i can still, to this day, feel exactly how i felt that night.
The two days that followed flew by, but that’s only because i was asleep most of the time. But before i knew it, i was being wheeled down to theatre by a porter, watching the lights on the ceiling flying passed my face, why were we going so fast? Because I sure as hell wasn’t eager to get down there quickly. Yet again i fought with the anethetists and went into absolute melt down mode. I remember just screaming and crying hysterically, watching my mam being pulled away by the nurses out of the room, her blowing me a kiss and tears streaming down her face. How much that must have killed her inside. Knowing her daughter needed her there and yet she wasn’t allowed to stay. I couldn’t catch my breath for crying so much. They were trying so hard to pin me down to the bed and i remember feeling the anesthetic going through my veins up my arm, and trying to fight and fight to stay awake, strangely, i was defeated and was out like a light.
I don’t remember waking up, being in recovery or being taken up onto the Children’s Ward. The first thing i can remember is being laid on my back with my head turned to the right, facing the door to my room and seeing a woman sat there reading a magazine. I knew straight away it wasnt my mam and panic set in. I tried to sit up, ouch, wrong move. I was flinging myself around the bed, trying to find a way to get up and get out of there. Terrified, confused and in excruciating pain, shouting for my mam. The woman stood up and darted quickly towards me and i started lashing out at her, telling her to leave me alone and not to touch me anymore, screaming and swearing at her, “don’t you think ive been through enough? Just leave me alone, i dont deserve this!”, but she persisted, took my hand and told me everything was going to be okay, that she was the nurse allocated to look after me. I just remember telling her to get my mam, and sure enough, within minutes, my mam was on the ward. She couldn’t actually get to the top half of my body for the amount of machines that were at both sides of my bed and all i wanted was a cuddle and reassurance.
My mind goes completely blank after that, and i just have little snippets of random, strange, stupid things that set me off panicking whilst i was laid there. For example, the noise the buffing machine makes that the cleaners use for the floors, absolutely terrified me and still does to this day. My stomach went into severe cramp, and i couldn’t stop it. I’d just been cut open 15 inches down the middle of my stomach and so I couldn’t breathe, and i remember trying to mouthe to my mam to shut the door to my room as it was getting louder and louder the closer it was getting. This happened every day when the cleaners came round, but not only did that trigger a panic attack and the severe cramps, but so did seeing my surgeon or even just hearing him talking in the corridor. I was so frightened of him. He’d put me in a pain that i couldn’t ever describe for anyone to understand. Nor was i prepared for the extent of how massive a surgery it was, and how much pain id actually be in. The closest i can get to trying to explain exactly what it felt like was as if i was being ripped apart from the inside out. It was as if the inside of my stomach, back and leg were on fire constantly and i had shooting pains that lasted for hours at a time, in my back, stomach and down both legs. But to make matters even worse, the pain relief i was given (Morphine, Tramadol and other Opioid based drugs intravenously), didn’t even take the slightest edge off my pain and there was nothing the hospitals ‘Pain Team’ could give me that i wasnt already getting.
Two weeks later and i was still in hospital, in a bay for just me and my mam. I was told prior to surgery that if i chose to stay on the Children’s Ward rather than the Adult Ward then that meant that my mam could stay with me throughout my time here. Something I’m so eternally grateful for because i honestly couldn’t have done any of it without her by my side. I hadn’t even been able to hold my own head up within those two weeks, so you can imagine the dreaded look of fear written all over my face when the door went and i saw two physiotherapists standing there, smiling and asking if my name was Jenna. I cried instantly, i knew what was coming. They tried their best to reassure me but i was having none of it. I wasn’t stupid. I may have been on the Children’s Ward but i was 16, not 6, so their usual techniques they used on “children” to get them to do something, had zero effect on me.
I instantly had this aggressive, stubborn “im not moving for nobody”, attitude as soon as they entered my room. But after they’d explained why they needed to move me and the risks that could occur if i stayed lying in bed, I agreed to give it a go. But i was adamant i was only going to sit up on the end of my bed and nothing else. I look back now and assume that the reason i was so stubborn, and had a disgusting attitude is because i felt in control for the first time since arriving at hospital. After over an hour of shuffles, scoots, lifting, rolling, pulling and pushing i was sitting up on the edge of the bed. I was in excruciating pain, i couldn’t breathe or talk but i had thee biggest smile on my face. I wasn’t sitting by myself, I had the physiotherapists behind me holding my head up, and in front of me so i didn’t roll forward. But i didnt care. I told them i wanted to try standing. The look on their faces said exactly what they were thinking. “Dont you think you’ve done enough for today Jenna?” …”you shouldn’t push yourself too far too quickly” they kept saying to me, but i was adamant! And sure enough, I stood straight, supported by staff, my mam and a Zimmer frame but i was standing! My legs worked! And from that moment, i just knew i was going to get better!

Once they’d got me back into bed, filled out the chart at the bottom of the bed, and packed up ready to leave, I said to them, “If i can get myself to walk up and down the corridor and up and down the stairs by Friday (baring in mind it was only Monday), can i go home?”, and the physiotherapist actually laughed at me and said, “I like how enthusiastic you are Jenna but i think we need to start out with a realistic goal first don’t you think? Then we can focus on walking and going home? You’ll be in here at least another week or two.” That wasn’t good enough for me, so i said to her, “I’ll be home by Friday,” and as she was walking out the door she shouted, “We’ll see” and i thought to myself, ‘yes …we will see’.
And sure enough, I was home by Friday!!

****Warning, Some Disturbing Images Attached*****

When you’re 16 the world is your oyster. You have so many plans for the future and you start to make dreams and goals, being asked “where do you see yourself in 5 years time?”, my answer? …at university studying midwifery. I was leaving school and starting a college course in “Health & Social Care”, which I was using as a stepping stone towards my dream career to be a midwife. I was a bubbly, fun, outgoing, laid back, enthusiastic young girl who had ambitions, who loved every aspect of life. But that was back in 2009. Little did I know then that my life was about to spiral out of control. That I was about to loose everything. That I was about to loose me.

In the months leading up to me starting college, I was complaining of severe back pain. I went to my GP to be told that I was using muscles I had never used before, and to take paracetamol and rub deep heat into my back. Despite explaining to him that I was extremely active in my daily life. I went to the gym 3 times a week, rode my peddle bike everywhere I went and I was a dancer for 10 years.

Nevertheless, in the weeks following, my back pain was getting worse, to the point I couldn’t get out of bed or walk far at all. It felt like I had fell and landed on my coccyx. I obviously then went back to my GP and he referred me urgently to the orthopaedic surgeons because I couldn’t sit, lie down or bend. Within a week or two I received a letter to attend the ‘muscular skeletal’ department at ‘James Cook University Hospital’ in Middlesbrough.

They decided to do an X-Ray of my spine and that came back with no obvious signs that there was anything wrong. However, because he could see the amount of pain I was in, and the lack of mobility i had, he decided to send me for a detailed MRI scan. Up until this point, the closest experience I had ever had with a hospital, was when I’d either sprained my wrist or ankle as a kid. I had no idea what an MRI scan was, what it did and why I was being sent for one. But I guess that’s the naivety and immaturity of being 16.

The next thing I remember after having my scan, was going into the consultation room with my Mam. Straight away l could see that my scan was visible on his computer screen. I had no idea what I was looking at but something stood out to me instantly, a small, kidney bean like shadow. He explained to us that he thought I had a cyst on my spine and that he wanted to do more scans, including a CT, blood tests etc. Again, I had absolutely no idea what a CT scan was or what it was used for. I was sent straight down to CT and then back up to see the consultant for the results. He explained to myself and my Mam that he was concerned that this “cyst” was wrapped around my spinal chord and resting on the nerve sack at the base of my spine. He then organised for me to have a biopsy done under general anaesthetic. I was devastated. I knew I was going to have to leave college.

The 1st of April was the date I was given for surgery, April fools day of all days. But what happened next, no one had prepared for. I was under the impression that the surgeon operating on me, was to remove the entire “cyst”, including vertebrae, and fit metal bolts, pins & screws in their place. He never actually removed the, what we now know was a tumour, from my spine at all. He only took a small sample.

When I woke from the anaesthetic in the recovery room, I was in excruciating pain and rigged up countless machines, all making noises that I didn’t understand. I was so spaced out on morphine, tramadol and other strong pain killers and I was absolutely petrified! As the days went on and I started to recover, I noticed that the right side of my body was weak. That my face had drooped down one side, I couldn’t even drink through a straw or cup without it pouring out of my mouth, down my face and onto the pillow. My right arm was weak and I couldn’t feel or use my right leg. Needless to say I was so frightened. But even more so when you hear the words “you’ve had a minor stroke”.

Recovery was obviously slow, but I was determined. Determined to walk again, and get movement and feeling back in my right side. Determined to get back to “me”. I was discharged after a few weeks and was progressing well at my mams house, despite having to live downstairs, use a commode and sleep in a single bed in my living room. On August 21st, I attended what I thought was a “routine checkup” to see my surgeon and to show how well i was recovering. Never in a million years did I expect what happened next.

Sitting in the consultation room, having a normal … “so how are you getting on?” …conversation, when he told me he’d received the results back from my biopsy. He said it wasn’t a cyst after all, but that it was actually a tumour called a ‘Chordoma’. At this point I didn’t understand what that meant, I’d never heard of it before. He then proceeded to tell me that that meant I needed more extensive, life threatening surgery and that I’d need to be referred to the spinal specialists at the ‘Royal Victoria Infirmary’ in Newcastle.

As soon as I heard those words my mind switched off, I don’t remember talking to him after that, nor do I remember leaving the room and waiting area. But what I do remember is collapsing in a heap on the floor in the corridor screaming and crying hysterically whilst clinging onto my Mam. We drove home in complete silence. Myself and my Mam crying uncontrollably all the way home. My poor grandad, who was waiting for us in the car, was so confused as to why myself and my Mam was in a complete state. Little did I realise then, that at that moment, my Mam knew I had cancer, but I didn’t. On the way out I was given a small piece of paper from the surgeon, ripped from an envelope with the word “CHORDOMA” written on it. I was living at home with my Mam at the time and was dropped off, along with my ex partner (who was as equally confused as my grandad). As soon as I got in, I grabbed my laptop, opened up Google and typed in “what is a Chordoma?”. I was so confused at the articles that came up; Macmillan, Clic Sargent, Cancer Research UK, the list went on. So I passed the laptop to my partner at the time and asked her to double check I’d spelt it right. Sure enough, I had. She burst into tears and I just sat, staring at the floor in complete silence.

Google just told me that I had cancer. “Chordoma bone cancer” to be precise.

Am I going to die? What happens now? Will I need chemo? Will I loose my hair? ….so many questions were spinning round and round inside my head. What do I do now?! I can’t cope with another surgery. The first one was so brutal and horrific, and I couldn’t physically go through that again. But I had no choice. I either had the surgery, or I died.

4 weeks later and I was pulling into the Royal Victoria Infirmary with my Mam and grandad in the car. Sat in the waiting room awaiting my fate. Petrified. Confused. So many questions going round and round in my head. When my name was called we made our way into the consultants room. In all honesty, I don’t remember much about that consultation. I switched off completely. All I remember is him explaining to me about the surgery procedure and expressing that it needed to be done as soon as possible. Needless to say I was terrified.

He told me they needed to open me up, 15 inches from my chest down to the bottom of my stomach, 15 inches from the middle to bottom of my spine, remove both vertebrae L4 & L5 and remove the tumour, then he was to replace that with a fibula they also planned on taking from my right leg and adding metal screws, bolts and pins to stabilise both the bone graft and my spine. All in one operation.

I had no words. Just silent tears rolling down my face. Why was this happening to me? What did I do to deserve this?

I just couldn’t take it in. I couldn’t cope with such a massive surgery at 16 surely? Was it going to work? Was I going to be able to live a normal life afterwards? Would I even survive the surgery? And if I did would I ever be able to walk again? So many questions, questions I had no answers to.

On September 1st 2009 I was getting ready to go down to theatre for thee most terrifying, life threatening, 9 hour surgery. Would this be the last time I saw my Mam and grandad? What if I don’t survive? What if I wake up paralysed?

I kicked, screamed and fought with the anaesthetists, to get off me, I’d changed my mind, I couldn’t do this. I just wanted this nightmare to end. Stop the world, I want to get off.