Before Diagnosis Part 2

So off me and my Mum went to see the neurologist, he did the same tests that the doctor did on me and agreed that there may be some damage to my nerves. He suggested that I have a blood test and an MRI scan on my brain, just to check that that the ‘damage’ to my nerves hadn’t reached up there.

I didn’t really think much about this at the time and to be honest I was more scared about having the blood test than the MRI scan. I’d always had a great fear of needles, injections were something I dreaded throughout my life and I wasn’t looking forward to this blood test either! However now things are completely different, I’ve lost count of the number of blood tests I’ve had and I will now just put my arms out and say ‘do what you’ve got to do’. The MRI scan, well I’d never had one of those before, so I guess I was intrigued to see what it would be like. Also I was quite looking forward to seeing what my brain looked like, (turns out it looks like any other picture of a brain I’ve seen!).

So I went to have my blood test and there were tears because well it wasn’t a pleasant experience. When you’re petrified of needles a blood test is your worst nightmare!! I also had the MRI scan, it seemed quite easy, all I had to do was lie in a tunnel, whilst the doctors did their scanning, I was given some headphones which were blasting out music so that kept me happy. I started to wonder how long this was all going to take when they then pulled me out. Oh good all done, I thought. ‘Right we’re halfway through now’, said the nurse. Oh great, I thought I’ve got to go back in. ‘But first’, said the nurse, we’re just going to give you the injection to put the dye into your brain so it will show up more clearly on the scan’. My heart stopped. What is she on about? I thought, no-one mentioned this to me before I came in, is she speaking to the right person? I was also scared because well as I’ve now mentioned several times, me and needles don’t get on!! I called out for my Mum who rushed in. ‘Are you ok?’ she asked. I told her what the nurse had just told me and my Mum looked as confused as I felt. She spoke to the nurse and said that no-one told us there was going to be an injection halfway through. The nurse looked at us both as if we were complete idiots and said, ‘Well this always happens in a MRI scan, we thought you knew.’ I closed my eyes and squeezed my Mum’s hand as they injected the dye into my arm and was pushed back into the scanner with tears rolling down my cheeks.

So both of these were done and within a week my blood test results came back and they said that everything was fine. Great I thought, now just to wait for the MRI scan results. The neurologist rang my Mum about this a few days later and said that he wanted to talk over the scan with his colleague, a brain specialist. He said it would be a few weeks time until he could tell us the results as the brain specialist was currently away on holiday so we would have to wait till he returned.

It ended up being about 6 more weeks we had to wait for the results. In the meantime I could feel myself getting worse. I was becoming more wobbly when walking and was just so tired all the time. My left arm was still wobbly, and what was first a kind of novelty was now becoming a great annoyance in everyday life. All the things that I used to take for granted like being able to eat dinner properly was becoming more and more difficult to do. I went on holiday for a few days with my friends to Guernsey and I was finding walking around more and more difficult. Normally I’d be striding ahead but I was seriously lagging behind and my friends had to keep stopping to wait for me to catch up. I felt so guilty and felt like I was ruining their holiday, but of course my friends were great, they were so supportive, helped me out and always made sure that I was ok.

So eventually, on Friday 5th of September 2008, me and my Mum were back in the Neurologists office awaiting the brain scan results. Again the Neurologist did some tests on me and then sat me down with my Mum. ‘Right’, he said. ‘Do you want the good or bad news first’? Bad News? I thought, that must be that I’ve got to take some horrible tablets for a few weeks. ‘Good news,’ I said. ‘Well the good news is that you don’t have MS or epilepsy or anything like that’ he said. Well I didn’t even know we were looking into anything like that, I thought, but hey all is good. ‘Right so on to the bad news now’, said the Neurologist as he reached over his desk to grab a sheet, which he then put up on a light box. ‘This is your brain scan’, he said and he pointed at something. ‘You see this kind of blur here,’ he said. I looked and thought oh no I must have moved during the scan, the bad news is going to be that I’ll have to go and have the scan again. ‘I think’, said the Neurologist, ‘I think this may be a brain tumour’.

I sat in shock and could already feel the tears running down my cheeks. What does he mean? I thought. Why did he say I think, well that surely means it isn’t, if he’s not even sure then how could it be? My Mum was looking shocked as well, I could see that she was trying to hold back the tears to be strong for me. ‘What do you mean?’ said my Mum. ‘Is it or isn’t it?’ The Neurologist looked as if he didn’t know how to answer this question. ‘Well I’ve spoken to the brain specialist and he thinks it is but I don’t agree, I’m pretty certain that this is a nerve problem’. My mum started asking loads of questions, using words I didn’t understand, like benign and malignant. The neurologist couldn’t seem to answer my Mum’s questions and suggested that we see the brain specialist.

I left the office feeling so confused, I didn’t know what this all meant. Me and mum walked out back to the car, sat in the front seats and both burst into tears, we hugged each tight and my mum told me that everything was going to be ok, we’d get everything sorted and that she would be with me all the way.’ and boy did she keep her promise!

We started to drive home but my Mum suddenly pulled over, still crying. ‘I can’t drive’, she said. At this point I didn’t know what to do. I told her not to worry and that everything was going to be ok.’ Mum phoned Dad and said that we needed to meet him. Halfway home we stopped in a pub car park where my Dad was waiting, having just come from work. Me and my Mum were still in floods of tears when we got out the car to meet him. My Dad’s face dropped when he saw us and opened up his arms for me, I gave him a big hug, whilst my Mum told him what had happened. They talked and agreed that Dad would go home to tell my Nan what had happened, and me and Mum would stop at my Grandma & Grandpa’s house to tell them.

My Grandma and Grandpa were great and so supportive, they hugged us both and told us they’d look after us. Once mine and Mum’s tears had dried up a bit we got back in the car and drove home.

We got home and I saw my Dad again with my Nan, they both gave me a hug. I didn’t know then that this was the last time I would ever see my Nan, my Uncle & Auntie took her away to stay with them that afternoon as well, we had enough to deal with! Unfortunately I didn’t get to see her again before she passed away a few months later. But I will always be so so grateful for that evening when we were all sat round the dinner table and she noticed my left arm wobbling, prompting my Mum to ask me to show her, which then led to the first doctors appointment. Things may have turned out worse if we hadn’t started investigating it then.

I remember sitting on our sofa by our front window wondering what to do next. My Mum told me that I should tell my friends what had happened. I said no, because I didn’t understand it fully myself, plus I had seen enough people crying that day and couldn’t bear to upset anyone else, I was still telling myself that this wasn’t true, I was fine, it was all ok.’ My mum picked the phone and rang one of my friend’s mum’s and told her what had happened. My friend was then told and let the rest of my friends know. They all immediately sent me messages, telling me not to worry and that they’d be there for me. I then realised that this was the right thing to do and was so pleased to receive their love and support. On Saturday we all met up at a coffee shop, they were asking me questions but I didn’t know how to answer them, it was a confusing time, all I knew was that on Monday instead of going back to start my 2nd year of college, I was going to be travelling up to Wimbledon to see the brain specialist.

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