How I found out I had spinal cancer

I found out I had spinal cancer because of an accident

Whilst out with my friends, I hit the bottom of my back coming down a wet slide too fast. I had extreme pain in my coccyx to the point I had to be carried off the slide. I just expected the pain to disappear after a few days but the opposite happened, the pain didn’t just increase, it spread. The pain started shooting all the way down my left leg as well as shooting into my back, and down into my coccyx until eventually I wasn’t using my left leg properly anymore. Instead of putting all my weight down onto my foot, I began dragging my foot so it wasn’t just pain, it was limiting my mobility which began affecting everything.

I loved sports and suddenly couldn’t walk properly, never mind continuing to do sports. It was keeping me up at night, I was crying all the time and I started getting in trouble at school because I couldn’t physically get to my lessons on time. A five-minute walk now took me 25 minutes so I started missing school. This was when we knew something more serious was going on but we never could have expected or prepared find out I had spinal cancer.

I went back and forth with my GP for a few weeks while my symptoms were worsening and they couldn’t find a single thing wrong, even my blood tests and X-rays came back normal. Then finally I was sent for an M.R.I for suspected juvenile arthritis as the condition is quite prevalent in my family. Even an arthritis diagnosis as an active, energetic and sporty 13-year-old was a lot to try and wrap my head around.

The day I knew I had a spinal tumour

I still remember that night like it was yesterday, it was quite late, we had not long been home from my M.R.I, and whilst we were having tea, my mum’s phone rang. She came back into the room trying to hold back her tears and said it was the hospital, I needed to pack a bag and go straight back in. I can’t even begin to describe the overwhelming, crippling fear I felt while packing that bag. All I could think was it must be bad if it can’t even wait until the morning. Nothing could have prepared me for what I was about to hear. After waiting for what felt like forever on a dark, empty ward having to sit through endless family history questions and tests, multiple doctors trooped in. They told me and my parents that I had two tumours on my spine. I sat, absolutely terrified and in utter shock, it felt like I’d just been sucker punched in the stomach, I just shut down. The three of us just sat crying and cuddling each other and all I could think was ‘why me’? You never believe it will happen to you.

The surgery

Things happened quite quickly after that. Within a week I was due to have the 10 hour operation to remove ‘lumpy’ and ‘bumpy’ which is what we decided to name the tumours. It was my parents’ great idea to make them a little less scary and it really did help. It was probably the longest, scariest, most gruelling 10 hours for my parents and I’ll be honest, I had never even had a small procedure before this so it was all very new to me and I was beyond scared. I was petrified of either waking up on the operating table or not waking up at all. It was a very stressful time but the surgery was a success and they were able to remove both tumours and left me with quite a sizeable scar going up my lower back that I wear with pride. I have never felt pain like sitting up and getting up after that surgery, every movement felt like my back was going to rip open but within a week I was up and walking properly and ready to get home and put this all behind me, or so I thought.

I don’t know why but during all this I never put the dots together and never asked whether it could be cancer or not. I genuinely thought once I had the surgery my life would go back to normal but unfortunately that never happened.

Six weeks of radiotherapy

After being blindsided by the cancer diagnosis and the initial worry I honestly didn’t have much time to think about things because I quite quickly started my treatment and all my focus was put on making it through that. I had 30 sessions of radiotherapy, one a day for six weeks. It was one of the hardest, most gruelling things I’ve ever experienced! It turned me into a zombie, for those six weeks all I was doing was sleeping and vomiting. I would fall asleep sitting up and even while eating because my body was so depleted and overwhelmingly exhausted. I had to be put on steroids at this stage which gave me what I like to call ‘moon face’ because my face was so swollen it was a full circle. My skin became so sensitive I had to use baby products. I honestly didn’t think things could possibly get any worse for me but they were about to.

The chronic pain began

About halfway through my radiotherapy, I started getting horrendous shooting pains down my legs that again started impacting my mobility and because I was also extremely exhausted, I started using a wheelchair for longer distances. Everyone including all the doctors thought and told us this was temporary, that the radiotherapy was just irritating my nerves and that once I finished treatment it should resolve itself. I was still expecting my life to resume after treatment, all I wanted was my old, normal life back and my old self as I no longer recognised either of those. Unfortunately, that never happened, I started relying on my wheelchair more and more until I needed it permanently. The spinal tumours had been slowly compressing and damaging my nerves for some time, and then the necessary surgery and radiotherapy inflamed my already damaged nerves. This left me with irreparable nerve damage and extreme, debilitating chronic nerve pain.

I have been in pain every second of every day for nearly nine years now and unfortunately, I will be for the rest of my life. Nothing can take away my pain, trust me I’ve tried every option available to me and they all failed. I can’t even escape the pain when I’m sleeping, I get woken up every 30 minutes or so in pain, needing to move. The best way to describe nerve pain is like bolts of lightning shooting up and down your legs constantly, never getting a single break. Due to the pain, I can’t walk very far, stand up for long or sit up for long and I also have soft tissue damage caused by the radiotherapy which left me with permanent muscle and nerve shortening in my legs. This means I walk on my tiptoes as I physically can’t touch my heel to the ground. Due to these issues and the pain, I am confined to a wheelchair whenever I leave the house, I can’t go anywhere without it and I have to use a stair lift at home. These are just the physical effects and aftermath caused by spinal cancer, mentally and emotionally it stole even more from me.

Becoming a young, disabled woman

Becoming disabled also led to even more isolation and suffering because my friends didn’t understand and society does not accommodate my needs as a disabled person. Instead I am faced with constant ignorance, judgement and prejudice. I am often forced into situations where people want me to prove my disability or justify why I’m using disabled parking because they see a young woman and instantly think I’m abusing these specialised facilities. The amount of times I’ve been asked ‘come on then what did you do?’ like I did something stupid just because I look young. That’s why I now run a blog called ‘A Pain in the Butt’ sharing my tailbone cancer journey and chronic pain journey to hopefully reach and help anyone else in a similar situation. I also want to help educate the rest of society on the harsh realities of a cancer diagnosis and living life as a young disabled woman in today’s cruel, prejudiced society that more often than not discriminates and isolates the disabled and chronically ill communities. I have been denied access because a shop or restaurant had stairs and no ramp or things blocking the isles. I have even been treated like a nuisance when needing to be into the disabled toilet that they were using for storage. I’ve had strangers shout ‘cripple’ and ‘give me a go of your chair’ and even had friends make fun of me simply for being disabled. These are only a handful of the examples of discrimination I have faced over the last eight years there are countless more and it all stems back to my cancer diagnosis. It literally impacted every single aspect of my life.

Life will never be the same

Cancer is a horrific disease that destroys lives, it does not discriminate, and it will target anyone at any age. My life was forever changed at the age of 13, it robbed me of all of the things I’d ever known and loved and left me disabled and in constant pain. However, cancer didn’t just impact my present, it took over and robbed me of the future I saw for myself and all of the things I wanted to do with my life. I have already missed out on so many things in my life and I know because of those spinal tumours I will continuously miss out on things and be limited for the rest of my life. I was forever changed and scarred from cancer and I will never get the person I was before diagnosis back. Cancer stole things I didn’t think could ever possibly be stolen, the person I was, the future I thought I would have, my hopes, dreams and goals in life. I have missed out on so much, I had to be home-schooled so I have no friends or social life, no relationships, I can’t drive, go to university or get a job. I also certainly couldn’t move out and live alone. I am extremely isolated from my peers but for me one of the hardest parts is missing out on making memories with my family because my body simply won’t let me.

Living with trauma

There is also a misconception that once you are in remission that you can just move on from it all, I even believed this myself. However, cancer never truly leaves you, once it’s in your life it’s there for good, I still live with the physical and mental aftermath and trauma to this day. It wasn’t until I was told I was in the clear that my mind actually had the time to try and process what I had just been through. It wasn’t until then that I started panicking that it was back, every twinge of pain in my back gave me such a sinking feeling in my stomach and terrified me every time. The nightmares also started then, I dream about the cancer being back and having to plan my own funeral and would often wake up in tears. It would be a lot for anyone to try and process never mind a teenager. Even to this day at twenty-two I am still trying to process all of the trauma cancer has caused me! I never thought it would but honestly, it does get easier over time. Yes, I will always have that little voice in the back of my head saying ‘it’s back’ but it gets quieter after every clear scan.

My pillars of strength

Cancer has taught me a lot, how strong and resilient I am and who and what is important in my life. It totally shifts your perspective and makes you realise how lucky you are to get to wake up and be surrounded by love and support. I know how incredibly lucky I am to be here, to be able to share my tailbone cancer story and to have been in remission for almost nine years now because not everyone is that lucky. I honestly could not have survived the past nine years without my amazing family, my mum even quit her job to become my carer. She never left my side for a second and my amazing dad had to continue working to support our family. I can’t even imagine how hard it must have been for him to leave us every day when all he wanted to do was be there. Also, my siblings made things as fun as they could and never failed to make me laugh and they will never truly understand how much they all helped. They were my light in all of the darkness. My family were there for every single procedure, scan and radiotherapy session, they were my absolute rocks and still are. I can’t even begin to imagine how difficult it must have been for them to watch their daughter and younger sister go through all that and I will be forever grateful for them for everything that they have done and continue to do for me.

They are my light, my hope and my reason to get up each morning and fight for a better life.

Leah, November 2022