Ependymoma and Me
A Painful Experience Prompted Further Questions
I was out with some friends and went down a wet slide too fast and hit my coccyx right at the bottom of my back on the slide and it was so painful that I had to be carried from the slide. I expected the pain to ease after a few days, but it didn’t. In fact, it only got worse. At first the pain was in my lower back and then the pain started spreading to my left leg. I was always very active and loved sports so when I could no longer do the things I loved, I knew something was wrong. It got to the point that I began dragging my left leg instead of actually walking on it. Kids at school made fun of me and I started getting into trouble. I was turning up late to lessons because the pain was so bad. A two-minute walk turned into a 15-minute walk and all I could say was “I’m sorry it’s the pain”. They thought I was being a dramatic teenager as did the doctors.
We had a battle trying to convince the doctors that something was wrong as all my x-rays and blood tests came back normal. We were told it was nothing and the pain would settle so they kept sending me home. My mam persevered and told them she knew her daughter and something was wrong. I was crying in agony all the time, wasn’t sleeping, wasn’t walking right and couldn’t do what I used to. Finally, because of my family’s history of arthritis, they sent me for an M.R.I for suspected juvenile arthritis.
The Unexpected Diagnosis
I had fully prepared myself for an arthritis diagnosis so when they found tumours I went into complete shock. We had not long been home from the M.R.I when they called us back. My stomach sank and I knew then it must be bad if it couldn’t even wait until the morning. My family was told I had 2 lesions in my spine which did not make sense to us until he drew a diagram of 2 lumps in my spine. I had a 10-hour operation on my spine to remove the tumours and it wasn’t until the day I was due to go home that they told me. The minute she said the word cancer I just went numb. It was like everything went into slow motion. I just couldn’t believe it and I kept thinking how, how is this real? Thirteen-year-olds don’t get cancer.
After I recovered from the surgery, I underwent six weeks of radiotherapy, 30 sessions in total. Radiotherapy was horrendous. For those six weeks all I did was sleep or be sick, it turned me into a complete zombie. It also contributed to my nerve damage which has been a lifelong consequence of the cancer. It completely changed my life forever in more ways than anyone could have predicted. We all expected my life to return to normal after treatment, but it never did. The tumours had been silently growing for years and compressing the nerves, the surgery to remove them and the radiotherapy necessary then inflamed my already damaged nerves. In a matter of weeks, I went from being a normal active teenager who loved sports and running to suffering from irreparable nerve damage, chronic nerve pain and needing a wheelchair to get around.
Hardships Beyond Diagnosis and Treatment
Cancer robbed me of all I’d ever known and loved, left me disabled, in constant agony, and has stolen so much of my old life and the old me. It scars you for life. It also completely stole the life and future I saw for myself. 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 had to be home schooled because of the pain, I can’t work, drive or go the University. I’ve lost nearly every single friend I had because I couldn’t do any of the things they were off doing. It’s been very isolating and lonely to watch the rest of the world live the life I’d give anything to have. I also know I am going to continuously miss out on things I want to do throughout my entire life because my body just won’t be able to do them. I will be limited, isolated and judged for the rest of my life because of those tumours.
It also affected me mentally in a massive way. At 13, all I knew about cancer was that it was deadly and it had killed members of my own family. I was genuinely terrified of dying and that fear stayed with me and affects me even today. I still have nightmares quite often that the cancer has returned and I have to tell all my family and plan my own funeral. There is such a misconception that cancer leaves your life as soon as you are in remission. However, that is not true for me. Cancer stays with you, scars you forever. It will always be there, niggling away at the back of my mind but that little voice does get quieter and quieter each clear scan.
Acceptance, Moving Forward, and Gratefulness
My advice to anyone dealing with ependymoma is to be kind and patient with yourself! There is no time limit on recovery and healing; take all the time you need and make sure you talk to someone, anyone! No matter how alone you feel, there are people out there who get how you are feeling and will help support you through it. Don’t be afraid to ask for help. We can fight this thing together! Also, laughter is the best medicine. Try and find joy where you can and surround yourself with positive people who make you smile. Lastly, remember there is always something to be grateful for, for me, I’m grateful to be alive!
I learned a lot from my diagnosis, mainly I learned just how strong and resilient I am. There have been so many times that I thought I just didn’t have anything left in me to fight, yet here I am today still fighting! When you go through all of that at such a young age, your priorities completely switch. It reminds you of who and what are important. I hold onto my family even tighter now because they are all that matters to me. They have been there every step of the way holding my hand. I never once felt like I was doing it alone. I could not have made it this far without their constant love, support, understanding and encouragement.
Every Story is Unique
I really struggled to find information about ependymoma’s for a few years. I usually went onto NHS or Macmillan pages, but I could never find any pages where people were sharing their experiences. I felt really alone, like there was nobody in this world who fully understood how I felt. Then I found CERN and other pages and suddenly I wasn’t alone. It was like people were plucking thoughts right out of my head. It opened up a world of people who understood exactly what I was saying and feeling and I understood them. I will be forever grateful for that!
I am now 20 years old and have learned so much from my experience with spinal ependymoma. I wanted to share my voice and my story. I created a blog to share the realities of being a disabled woman living with chronic pain called ‘A Pain In The Butt’ and I write about my chronic pain chronicles. Whether you are disabled, have chronic illness, or know someone who does and want to understand more about their struggles, you have come to the right place. https://apaininthebutt.co.uk/ Thank you so much for reading and for your support. If I can help just one person than it will have been worth it.