Zainab
Craniopharyngioma

“I wouldn’t be the person I am today if I hadn’t have had my brain tumour”

In September 2010 I was diagnosed with a Craniopharyngioma. I was then operated on at Great Ormand Street Hospital, a week after I was diagnosed.

Mum, Dad and me were sitting in a small rectangular room in the Parrot Ward. We were told that I had a brain tumor and were shown the MRI scan pictures as well, which I found rather funny. But I was only 6, so I didn’t really understand what was going on.

A week after that, we where admitted into hospital for surgery. We went in on a Thursday and had my brain surgery done on the Friday. The surgery apparently took 9 hours.

When I woke up I was feeling very weak and I could feel pain everywhere. Everyone kept telling me I was special, but I didn’t understand why I had to go through so much pain, if I was special. I was kept in hospital for three weeks. After we were discharged, I thought everything would be over but that wasn’t the case. A part of the tumour was still left in my brain, which the surgeon could not get to, so I had to go to America for 3 months to have Proton Beam therapy.

On 18th December 2010, mum, dad and me flew to America. I didn’t really want to leave at all. I would be spending 3 months without my family. My two younger sisters had to stay with my Nan. We stayed in the Ronald McDonald House, which was in Jacksonville, Florida. Everyone there, including staff, was lovely. I had the opportunity to make lots of new friend too. I spent my 7th birthday there, we went to a dolphin place, where I got to feed the dolphins and touch them. We experienced loads of new things. Towards the end of February, we went home, with the reassurance that my tumour would shrink.

I had to have regular follow-ups and scans to see the size of the tumour and by the end of the year my tumour had shrunk completely.

 
The situation today

Over the last 6 years, I have been on medication and will continue to take the same meds for the rest of my life.

Since surgery, I have lost my vision in my right eye, it started off as a fuzzy like dot, but now it’s just black. My left eye does the job of both eyes, which leads to straining and gives me headaches. My peripheral vision is very limited; I can only see what is in front of me. I struggle a lot at school. I find it hard to see the whiteboard and walk around in the corridors from class to class, but school has been helping me with that.

My weight is continuously going up but I’m trying to find a way to stop that happening. I have been avoiding most foods which contain fat, for a very long time. I recently got a Fit Bit, which helps me monitor how many steps I’ve done. My daily goal is 10,000 steps and I try to stick to that challenge every day but sometimes that’s not so easy. Sometimes I feel self conscious or upset about myself, because it’s not really my fault that I am this way.

To help cope with all of these crazy feelings I like to draw or weirdly talk to myself. Art is the one special thing that helps me through every situation. Also it helps, if I can talk to someone who understands what I’m going though, or some one who can relate to the problem.

I am now in year 8. School life is rather hard for me but luckily I have the great help from most teachers around the school. I’ve always felt different from all the other people around me, which has dragged my confidence down. Confidence is something that I massively struggle with, but I’m working on it.

In a way, I’m glad that I had a brain tumour; because I would not have met such wonderful people and I wouldn’t be the person I am today.