Amy's Story
I attended an emergency doctor's appointment for being clumsy, dropping things, loosing feeling in my left side, I had to do a series of tests with the doctor and he decided to look behind my eyes, he noticed pressure behind them and decided to send me to A&E where the doctor did a pin prick test on my arms, she noticed a difference of feeling from one arm to the other, while in A&E I had a C.T scan and a MRI scan, I then got taken up to the ward after being told I would be staying in for further tests the next morning.
When my parents came to visit , the doctor told my parents they had found something on the scans and that they wanted to perform a Brain-stem Biopsy, this happened on the Wednesday, I was in theatre for 5 hours and was taken upto the intensive recovery unit. The day after i was taken back to D10 to continue with my recovery.
Whilst in hospital, I was put on a number of tablets, steroids, stomach protectors, anti-sickness and paracetamol, all these to help me feel comfortable. Whilst I was in hospital the doctors and nurses had told my parents that I had an inoperable stage 4 aggressive brain tumor, basically they could not operate on it as it is wrapped around the vital bits of my brain, they also told my parents this would kill me.
On the Friday after a week of being in the hospital i got told i could go home, finally!! I have never moved so fast out of my bed to get my stuff ready, even before my mum and dad has arrived at the hospital I was ready to go home. My wheelchair already at the bottom of the bed waiting. All that was left was to wait for my tablets, then when they arrived I was free to go!
I managed to walk from the ward to the car bearing in mind i was unsteady on my feet and a little unbalanced but i managed it with a little support from my mum. Getting home was the weirdest feeling ever. Little did I know it was going to be completely different from when I was last at home. When home we were told to do a tablet chart to keep track of what I had to take. Everyday I had to take my temperature making sure it didn't reach 38 or above. I was also given what they call a magic number.
Whilst at home I had to be supervised when doing everything, going to the toilet, going up the stairs, going outside....everything! I'd gone from being really independent to not having any independence at all, which was hard for me as I have always been an independent person.
I received the biopsy results from my consultant. The tumor that I have would eventually kill me, I was heartbroken.
From that day on I have become more positive about it and taught myself to cope with it and everyday has become easier for me and my family. Around 5 weeks later i started radiotherapy (mon-fri) and chemotherapy (everyday) i was on a 6 week intense course.
Before all that started I had to have my mask fitted for the radiotherapy, that was scary! Throughout my treatment I coped really well and just got on with it.
After my treatment I had to have blood tests every week and speak to my consultant just to see if I had any worries about anything and if everything felt fine.
The doctor told me that they would be lowering my steroids every other week depending on how I got on. I got on pretty well with this, I went from 8mg everyday to 1/2mg once every other day which was great. But then I started to have really bad headaches and was in and out of hospital, so they had put me back upto 4mg of steroids. Which I am ok with, it could be a lot worse!

During my visits to the hospital I have met some amazing people who have really helped me through coping with my brain-stem Glioma, my parents, family, friends and doctors & nurses from the hospital.

I have also recently shaved my head.

Recently I had an update with my doctor, about how the radio therapy had gone and if it had worked or not. Unfortunately it wasn't good news, the doctor told us from the scan that the radiotherapy had done good for the benign parts of the tumor but hadn't done anything for the aggressive part. Worst news I had ever heard in my life.

So now were just taking everyday as it comes, planning family days out and just enjoying the time with my family and friends.

I have been put on all my different tablets and medicines including morphine and a stronger dose of chemotherapy, but I will fight this and I will get through this.

Thank You for reading my story!