Evelyn’s story: “I haven’t changed as a person; I just have a tumour in my brain”

Earlier this year, Evelyn received the news she had a brain tumour. Here, she shares what it is like to face cancer as a young person…

“In December 2021 I caught covid 19 and I was unwell. I just lost my taste and ever since then things just went downhill. A few weeks after I had recovered and got rid of the virus, I was starting to experience headaches at first, they were manageable and would eventually go away but by about February time 2022 they got worse and I started experiencing other symptoms such as vison problems, seizures, inability to focus, balance problems and some others.

“One day in February I was really ill I had an unbearable pain behind my eye, I had a fever, I couldn’t see properly and my head felt like it was going to explode, because of this my mum rang the doctor and she told us to get me up to hospital as soon as possible. While on the way I was incredibly fatigued and I felt odd like something was coming on and unfortunately outside the A&E doors I collapsed and had a seizure. After they took me to the paediatrics, I was throwing up for hours they gave me some sickness medicine and did some checks on my heart, a doctor came eventually did some strange neurological checks on me didn’t do any scans or blood tests did a urine sample and just sent me home saying it was just dehydration.

“About 3 weeks later I was still experiencing these headaches, vision problems etc, I was still living my life normally going to school going for days out but was still getting the headaches which eventually turned into a pressure like feeling, I felt like my head was going to explode. So, my mum told the GP and she rang up the hospital and said that they needed to do some tests, so when I went back, they did some strength tests, blood tests and booked me an MRI scan for 2 weeks’ later.

“After I had the MRI, I was incredibly unwell at school, I felt like my head was going to explode, I couldn’t see and I was having double vision. My grandad came and picked me up and, on the way, back to my nan and grandad’s my mum rang my grandad and said the hospital needed me to get up there immediately, my mum picked me up and rushed me up there. I was put into a side room and after about an hour and doctor came in and took my mum aside, when they took her out, I immediately knew something was wrong when my mum came back in, she told me the bad news. I had a brain tumour on my pituitary gland, which was blocking spinal fluid from leaving my brain so fluid was building up which is what was causing all of my symptoms. The doctor told me that I was being blue lighted up to GOSH to have a VP shunt inserted into my brain to drain the fluid.”

Evelyn was diagnosed with a brain tumour at 13

“When I arrived at GOSH it was about 2 am and the did a few tests on me and left me to sleep. The next day I was being given anti biotics through a cannula in my wrist which cause it to swell up and I had a relapse of symptoms and they rushed me down to have my operation. As soon as I woke up, I was feeling better I didn’t have the pressure or any other symptoms. A day after my op they took off the bandage I was really upset when I saw that they shaved a line of my hair and I had lost a lot of weight. Four days later I was allowed to leave I had a shower and realised that my hair covered the line that they had shaved and was feeling better.

“About 2 months later and after I had recovered, I had a meeting with the surgeon and an oncology (cancer) doctor about how to get rid of the tumour I could either have surgery to cut it out but it was incredibly risky, chemotherapy or radiotherapy but they didn’t recommend radiotherapy because of my age. So, me my mum and dad decided that I would have chemotherapy.

“On the 27th of May 2022 I had a picc line inserted into my arm and started my treatment which I am still undergoing now my body isn’t reacting that well to the chemo I’ve been unwell. Luckily, I haven’t lost my hair it has just thinned.

“The difficult conversations I have had to deal with is telling my friends, telling my school and most importantly, telling my sister. I have found these extremely difficult as my friends don’t know what to say to me or how to deal with me which I have found strange. I haven’t changed as a person; I just have a tumour in my brain. Although my teachers know how to deal with me, I don’t trust that they actually know what they are doing if something happened and I feel awkward when they mention it because they talk to me like I am a baby. 

“The hardest part was telling my 11-year-old sister because I knew she was heartbroken and I knew she was just as upset as I was. There are things I can’t do with her that I used to, such as amusement parks, water slides, swimming; all the fun things we used to love doing together.  

“These conversations are always made harder by the fact that people don’t truly understand what I am going through, but I am still fighting every day and persevering even with the challenges, knowing that one day I will be cancer free”!”

Author: Emma

Posted on Monday 5 September 2022

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