Chapter 1

As soon as I woke up I knew something was wrong. I’d been having chemotherapy for 6 months for a Ewings Sarcoma in my left hip, unfortunately it wasn’t working and the decision was made to perform an amputation, a left hip disarticulation, my leg was to be removed at my hip. I was 15 and was distraught at this news, before I was ill I had been one of the pretty, popular girls at school. I’d had long, beautiful dark, brunette hair, deep brown eyes and skin that tanned if I just looked at the sun. I’d started puberty early and now had a stunning, slim but curvy body, pert 32c boobs and long, toned legs. I’d always been precocious, I started masturbating at about 11, I first had sex at 13 and by 15 I’d had 4 sexual relationships and had become pretty good at sex. I’d had a boyfriend now for almost a year, his name was Ben, and despite me being ill, he had stayed with me, even when I told him my leg was to be amputated. It had been hard the last few weeks being in the hospital and only being able to see him over FaceTime, only my parents were able to visit me, not even my older brother, Zack, and younger sister Caitlyn were allowed.

A few months before my 15th birthday I’d started getting pain in my left hip, my Mum kept telling me it was nothing but I kept complaining, and after waking up one morning and finding I was barely able to walk, my Dad took me to the Dr’s. He put it down to growing pains and told me to take paracetamol and ibuprofen. I knew something more serious was wrong though, but no one would believe me. I’d always been very athletic and sporty, but was finding it more and more difficult to undertake any sports, my teacher noticed that I was tiring more easily, but my Mum just put it down to being a teenager and brushed it off. I’d also been losing weight without even trying, my Mum just blamed it on all the exercise I was doing and told me I needed to eat more. One afternoon I was playing volleyball when my hip gave way and I crashed to the floor in agony.

The school called my Dad who came to pick me up, even though I had to hold him and hop to the car, he still told me it was nothing more than growing pains and gave me some ibuprofen. By the next morning, I still couldn’t walk and my whole hip was hot and bruised, my Mum gave in and reluctantly took me to the Emergency Department where a Dr decided to x-ray my hip. I knew something was very wrong when he walked into my cubicle with another Dr. They gently and carefully told me that there was a massive tumour in my hip and that I needed to start chemotherapy straight away. I felt like I was watching my own life from above me. The next day I was sat in front of a paediatric oncologist who explained that I had a Ewings Sarcoma entwined around the top of my femur and hip. The next day after that I started chemotherapy.

Over the next few weeks I lost my long, beautiful hair, along with my eyebrows, eyelashes and pubic hair, well, what there was of it, I’d always kept it neatly trimmed. I felt sick and tired all the time and spent a lot of time vomiting. I spent nearly all my time in the hospital connected to drips. My slim, curvy body became emaciated. I had my eggs harvested and frozen so that if the treatment made me infertile, I could have IVF later if I wanted to get pregnant, that was something I’d never thought I’d have to worry about at 15. Over the months of treatment, I suffered a pleural effusion and two pneumothoraces which left me struggling to breathe and needing a chest drain and a stay in ITU on each occasion.

Six months after I started treatment the oncologist gave me even worse news, the chemotherapy hadn’t shrunk the tumour, only stopped it from growing, the only choice was too amputate my leg. When he told me I screamed and shouted, I pleaded with him not to do it and begged him to find another way. Once I realised that there was no choice I cried and cried until I felt numb. The next morning I was wheeled down to theatre to have my left leg disarticulated at the hip.

When I woke up I knew straight away that something was wrong. At first, I put it down to the anesthetic, but as my head cleared, the more I knew something was wrong. From my hospital bed I called the nurse who came over and smiled at me, she sat me up a little, helped me sip some water through a straw, then asked me if I was in any pain. I shook my head then asked if everything had gone ok. She assured me it had, then said she’d get me taken back down to the Paediatric Oncology ward where my parents were waiting for me before she walked off. I looked down the bed and was sure I could still see my left leg making a bulge in the sheet, I also saw that the sheet seemed flat around where my right leg should be. I tried moving my legs and saw the toes of my left leg wiggle whereas nothing moved on my right leg. I could feel myself starting to panic, I looked around and saw the nurse-call button on my bed, which I pushed repeatedly until the nurse came over.

‘What’s up Haylee?’

‘They amputated the wrong leg.’

‘Don’t be silly, you’re just imagining it.’

‘I’m not, I have a Ewings Sarcoma in my left leg and it looks like my right leg is now missing.’

‘I think you’re just confused, probably from the anesthetic and analgesia.’

‘I’m not, look, I’ve been having treatment for the last 6 months, I know where my cancer is, please, believe me, they’ve amputated the wrong leg.’ I could feel panic building up inside me and tears start to flow.

‘I’m sure the Dr didn’t make a mistake, it’s just not possible, it can’t happen.’

‘Please, just check my notes.’ I pleaded. The nurse sighed, took my notes from the end of my bed and started reading them.

‘Look, it says right hip disarticulation.’ I read the page she was pointing to and she was right, I started to wonder if I was crazy.

‘Please look further back.’ She sighed again, but placated me and carried on looking, suddenly I saw her face go pale as she started flicking back and forth between pages, she then looked at my legs, lifted the sheet, looked again, dropped the sheet and looked at the notes again before looking at me sorrowfully. ‘I’m right aren’t I, they amputated the wrong leg?’

‘Let me get the Dr.’

‘Just tell me I’m not crazy.’

‘I need to check with the Dr.’ She replied, as she quickly went to the nurse’s station and picked up the phone. A few minutes later several Dr’s and nurses appeared, all looking panicked. The panic in their faces increased when they read through my notes and increased even further once they looked under my bedsheet. I was getting angry at no one answering my question and ignoring me. Eventually, my oncologist came down with my parents and sat next to me while my parents stood next to my bed.

‘Haylee, I don’t know how to tell you this, I don’t know how this happened, but the wrong leg was amputated, I am so sorry.’ My Dad erupted in anger, threatened to sue the hospital and every Doctor that had had anything to do with my treatment, while my Mum hugged me tight as we both cried. My Dad wanted me transferred to another hospital for a second opinion, but my Dr said I wasn’t strong enough to be transferred to another hospital with a paediatric oncology department.

‘Can they reattach the leg?’ I asked innocently.

‘No, sorry, the chances of successfully reattaching a leg that was amputated that high are almost zero, even if they weren’t, the leg has been disposed of.’ The oncologist replied.

‘Great, so I will forever have no legs.’ I said as I continued to cry.

‘I’m afraid so Haylee, I am so sorry.’ After about an hour of arguing I was wheeled back to the ward and made comfortable overnight. I felt numb about what had happened and the realization that, instead of having one leg for the rest of my life, which I’d barely come to terms with, I would now have no legs for the rest of my life, which at 15 seemed to be a very long time, if I survived cancer.

The next morning several members of hospital management came down to speak to my parents and me. I didn’t really hear anything that was said, I know being sued and compensation was mentioned several times, but I was so weak I tuned it out. Mid-morning I was wheeled back down to theatres so that they could amputate the other, remaining leg.

This time when I woke up my body felt even more strange. I reached down and felt an empty space below my hips. A nurse leaned over, sat the back of my bed up and helped me drink through a straw again. I looked down and saw the sheet drop away just below my waist.

‘They did it right this time?’ I croaked.

‘Yes, they did, I’m sorry.’ She half smiled in reply. Later I was wheeled back up to my room where my parents were waiting, I saw them both look at where my body now ended and start to cry.

‘Please don’t.’ I whispered.

‘Sorry.’ They both replied before they both sat on the bed where my legs should have been and cuddled me.

Over the next few days, my pain was kept under control with fentanyl, so I was pretty spaced out and tired most of the time. After that, they slowly stayed weaning me off the fentanyl onto codeine to start with and eventually gabapentin, paracetamol and ibuprofen. I was also taken for a series of x-rays, MRI’s and CT scans so that my oncologist could check they’d got the whole of the tumour. 5 days after my legs were amputated he came to my room and sat down with my parents and me.

‘Haylee, I’ve finally got some good news for you, I’ve examined all the pathology reports and imaging and am pleased to tell you that the margins are clear and it looks like we got the whole tumour.’

‘Great, but I ended up with no fucking legs, as if having one leg wasn’t going to be bad enough.’ I replied angrily.

‘Haylee, language.’ Mum replied.

‘It’s fine. Haylee, I am so sorry about that, the hospital has launched an investigation and the surgeon has been suspended, I know that doesn’t make this ok but I hope that finding out how this happened will help you somewhat.’

‘Well, I will still be speaking to a solicitor about suing this hospital.’ Dad said.

‘That’s fine, that’s your right. Let’s not talk about that now, let’s worry about Haylee. I would like to do some radiotherapy just to make sure there’s nothing left, ok?’

‘Ok.’ I sighed. ‘When do you want to start?

‘We’ll start tomorrow.’

‘Ok, thanks Doc.’

‘Haylee, I don’t want to try and minimize what happened to you in any way, but, off the record, I hope you sue this hospital and that the surgeon never works again, however, there is a small advantage to having had your other leg amputated.’

‘What’s that?’

‘Well, there is a chance of Ewings Sarcoma reoccurring, especially in the same area of the opposite limb, now that you no longer have the opposite limb your chances are a lot less.’

‘So, you’re saying I should be thankful that he cut off my good leg.’

‘No, no, not at all, I’m just letting you know. Again, I am so sorry Haylee. I’ll leave you guys to it and see you in the morning.’ He said smiling awkwardly as he left the room. It wasn’t long before I fell asleep, exhausted from everything that had happened to me.

I spent the next 3 weeks in hospital having daily radiotherapy, I felt so ill, even worse than during my chemo, I had burns around my hip and pelvis that were so painful, I begged the oncologist to stop several times, but he promised me it would be worth it in the end. I also had physio and occupational therapy to teach me how to use my new, matte purple, Quickie 7RS wheelchair, which my parents had ordered for me as soon as I was told that my leg was to be amputated, I’d intended to use crutches and maybe a prosthetic later, but I knew that I would need a chair to start with, and from time to time. After ending up with no legs, the hospital offered me an electric wheelchair but I declined, I felt it would make me feel even more disabled.

In physio I was also taught how to move around using my arms, how to transfer, how to sit up and roll over, how to get dressed, just stuff to make my life easier. Once the radiotherapy was finished, I was kept in for another week to make sure my pain was under control and for rehydration, as I was still vomiting a lot and struggling to keep anything down. At the end of that week, my stitches were removed and my new stumps were thoroughly checked before I was finally discharged home, it felt so weird to be there, everything there was normal but everything about me had changed. I’d been short before, at about 5’0, so I’d been used to having to climb on the kitchen counters to get things from the cupboards, but now everything was so difficult to get to, I had to work out where to position my wheelchair so that I could open even a floor-level cupboard or the fridge. Many times I ended up frustrated and angry, and would slam and smash things, other times I ended up in a sobbing heap on the sofa, I couldn’t get to my bedroom without help anymore. Having to learn new ways of doing things, especially as I was still weak, was tiring and frustrating.

To start with, I would transfer from my wheelchair to the sofa or my bed using a transfer board, but I soon learnt how to do it by just placing my hands on what I wanted to transfer onto, lifting my bum over then turning around. It was clumsy but much quicker and easier than using the board. Even using the toilet was difficult, especially learning how to wipe my bum again, I fell from the toilet a few times leaving me angry, frustrated and upset. I spent my days lazing around the house, watching TV, reading, drawing and browsing social media, Mum made sure that I did my physio 3 times a day. 2 weeks after coming home, Mum decided that I needed to get out of the house, I was nervous but Mum reassured me and insisted I needed it for my mental health. She helped me shower, dry my hair, and then dress in light grey sweatpants, that I folded the legs up and tucked into the front of my waistband, with a tight white t-shirt and a blue hoodie. She then carried me downstairs, sat me in my wheelchair and got her car keys and purse while I got my coat and beanie hat on, I then wheeled outside to the car. Mum followed me out, locked the front door then walked over to me, unlocked her Land Rover Discovery then lifted me into the front seat, helped me get my seatbelt on then closed the door, took my wheelchair and put it in the boot then jumped into the driver’s seat.

She made the 20 minute drive to Waitrose and pulled into one of the disabled spaces, it was the first time I’d used one and I instantly felt like everyone was watching me. As Mum got out of the car and started getting my chair out I felt my anxiety rising, and when she opened the door I had a full-blown panic attack. I’d always had bad anxiety, it had gotten even worse during my cancer treatment and even I recognized that it was now starting to become a problem. Thankfully, I’d always had really good friends that had always helped me overcome it, though often I’d end up overcompensating and seeming a little over the top and crazy.

‘Come on then.’ She said as she bent forward to lift me out.

‘No Mum, I can’t, please don’t make me.’ I said starting to have trouble breathing.

‘Come on Haylee, you’ll be fine.’ She said crouching down and placing her hand over mine on the seat.

‘No Mum, I can’t, they’ll all look at me.’

‘Haylee, sweetheart, no they won’t, and if they do, who cares?’

‘I do Mum.’ I said crying.

‘Haylee, look at me, breath with me, in for 4, hold for 4, out for 4, in for 4... ‘ She said taking deep breaths and holding it before breathing out. I looked her in the eyes and copied her breathing, I started to feel a little better after a few minutes, but I still felt scared about going out in public. ‘How do you feel?’