So, I had a brain tumour as a kid. When I was nearly 6, I used to get bad headaches, early morning sickness, and nightmares. Doctors kept saying this was normal. They said I had immature reflux causing the sickness, also they thought I had migraines.
My parents requested a check-up at the hospital, which took a long time to come through as the GP had said it wasn’t urgent. The Consultant at Southend Hospital tested my reflexes, she said I had none! Then she examined my eyes and immediately saw something pressing the back of my eye. She sent me immediately for an MRI scan. I was then rushed to Great Ormond Street Hospital for a second MRI. I was told by the consultant I had a “Medulloblastoma” brain tumour! My parents were horrified and shocked.
My Treatment
At Great Ormond Street Hospital I had surgery to remove the majority of the tumour in a six-hour operation. The tumour was gold ball sized. My parents were told that I would only have survived a couple of days more if left untreated.
I went into high dependency ward for a week, I suffered hallucinations due to the side effects of drugs. I remember the colourful butterflies on the curtains, they looked like flying bats and spiders, I remember trying to pull one off my face but I assume that was the tube going through my nose, the wonderful nurses and my parents played along to help calm me.
The staff at GOSH were very helpful and friendly. It was December and I remember the Christmas activities were going on. I met a clown that made me a balloon guitar, I remember meeting Westlife, they were all dressed as Father Christmas, and they pretended to play my balloon guitar.
I remember having lots of tubes in me. I had 33 stitches taken out of the back of my head, I still remember my Nan and Granddad giving me a squeaky toy, I bounced it every time I had a stitch out, this made me laugh. My parents said I was so brave.
I had radiotherapy treatment. A plaster mould was made from the shape of my head, and then a clear plastic full head mask was moulded from this. The mask was secured to my head during the treatment. Each day I remember looking forward to putting Star Wars stickers on a large cardboard cut-out the shape of R2D2 that the radiologist made for me. (I went to London every weekday for 6 weeks for this treatment). I remember one journey home, I lightly pulled out clumps of my hair and put it on my Dad’s bald head which made me laugh.
The after effects
Although the treatment saved my life. I was left with late effects including slow processing, fatigue, a weak left side, and weak bones, (osteoporosis). I had to re-learn how to walk. I remember one of the doctors saying I wouldn’t be able to do a ‘roly-poly’, but after 4-5 tries I could do it. This is one of my processing problems; it still takes me 2-3 tries to learn some new things. I also developed small cataracts in my eyes.
Paediatric community nurses, Julie and Jim, visited me every week, they helped me and my family with medication and lots of other support. I couldn’t eat much; I wasn’t keen on smells and tastes, so I had a nasal feeding tube. I still remember the feel of it being inserted. I had many visits to Southend hospital to see a nutritionist. Later it was suggested that I had a more permanent gastro feeding tube in my stomach. The nurses taught my parents how to administer the nutrition that was connected to a machine overnight. I had this for a few years. I also had high nutritious milkshakes; chocolate was my favourite.
The treatment also stopped me growing; I went onto growth hormone treatments, which meant I had to have daily injections. Just as well I did not have a needle phobia, as I also had to have regular blood tests. I also had frequent MRI scans to see if the tumour had returned. I still have them. I got used to the noises the MRI machine made and they sound like a DJ making a sci-fi mix, “der der der der der der der. First time in the machine as a child, I watched “The Bugs Life” movie, this made me less nervous and I concentrated less on the weird noises, but I was upset I didn’t get to finish the film.
I remember having loads of different cognitive tests. I visited lots of psychologists, to help with mood swings, anxiety and to help come to terms with the enormity of what had happened to me. It wasn’t until my parents were referred to Dr Spoudeas and Success Charity that I was able to get the support I needed. Dr Spoudeas directed me to many clinics for the all the numerous treatments and therapy I needed. She helped me right up until I was transitioned to adult clinics. And we keep in touch through the Success Charity conference which I attended last year.
At School
At primary school, I had 1 to 1 support most of the time, and at secondary school and college I also had a learning support teacher for most of my lessons, except for ICT and maths, as these are my keen hobbies and my strengths, sometimes I helped the other pupils. When doing my GCSE’s I was given extra time, to help with my processing and fatigue.
It was difficult for other children to understand what I had been through. At school and even now, I push my hardest. I am determined. Some days my teachers wanted me to go home and rest, but I didn’t want to miss my lessons and stayed in school. All this extra hard work did make me very tired and aggressive at home though. I passed all my GCSE’’s and gained “A” in Media and “distinction” in ICT. I did have to retake my English at college.
I went to Beavers, Cubs, and Scouts, this helped me gain confidence in meeting new people, and I went on camping trips with the help of my family and leaders. During scouts I was nominated for the Meritorious Conduct award at Windsor Castle, I was awarded this by the head Scoutmaster and the Duke of Kent. While at school, I gained the Jack Petchey award for bravery. I was also awarded Highly Commended; citizen of the year for children of courage, my community nurse put me forward for this.
Life after school
It was difficult having all the support at education then going without much help in the real world. I found it hard looking for work as a full-time job was too much. I first worked as a data administrator, part-time for a few years, and then was made redundant. While searching for a new job, I volunteered at my local charity shop. I am now working in retail part-time; I worked in a small newsagent’s shop for two years and then moved to a larger store.
I didn’t get out and meet people socially until I was 20; I found it hard to meet and socialise with others. I enjoy playing board and card games with others, I play Magic the Gathering once or twice a week at my local game shop. I enjoy watching movies and going to theatres and shows when I can. I enjoy cooking BBQ for friends and family.
I have been on holidays with my mate from college and I was recently best-man for my best mates wedding. My sister, Charlotte has been through a lot with me while I have through this hard struggle, she is now a top nurse in Basildon Hospital on the Cardiology Ward.
Like all parents, going through a child’s cancer, there have been very hard and very difficult times for my mum and dad. People don’t realise that the problem does not go away when the tumour is removed. In fact, life can get harder, but I was and still am lucky to have extra help to enable me to cope.
