Stories from C_Fishes

The power of contemplation

story added: 12/06/2007

After long and hard thought and consideration, I managed to twist Dad’s head round to the idea that an operation was a good thing. He explained that seeing the doctor, and listening to what he had said, was able to sway him into thinking along the same lines as me. He said that he was now able to kind of start to contemplate how I must have been feeling for the past six months.  I felt insulted at this because I had been telling him over and over how I felt and how terrible it was for me, then this doctor says exactly the same thing (‘You either waste your life worrying about it, or you do something about it’) and he was suddenly able to understand!

                It took a lot of deliberation, but I finally decided to try and schedule the operation for June or July time, where I would be able to sit my Spanish and ICT exams in May and still be able to do the sponsored bike ride in the summer.

                We were able to get hold of the doctor’s secretary a few days later and we expressed an interest in setting a date for the operation.            After a few weeks, I managed to get an operation date. I felt so much better now a final date was set, and that I didn’t have to worry so much any more. The only problem though was that this meant I’m not going to be able to sit either of my GCSE exams this year, as I won’t be able to finish my full Spanish exam course thing and I will miss the ICT exam, which, in turn, means more work next year.

Shock number 3

story added: 22/05/2007

Well, what can I say here? After having my Dad ring me at 4 o'clock about 5 weeks ago and discovering that I could have the operation the next day and spending the past 5 weeks in hospital, it's nice to get home.

The op went well and there are no side effects from it, my doctor proudly announced to me yesterday . The only problem for me is that they weren't able to remove all of the tumour because it would have made my heart stop and made me blind, so only about half of it has gone.

I feel really angry and upset because the op was supposed to get rid of the tumour and the epilepsy but it hasn't. It makes me think what was the point really. All it has left me with are constant headaches, feeling sick and a constant feeling of being ill. But the surgery was inevitable apparently so it had to be done at some point

Isolation 2

story added: 13/04/2007

Mum and Dad made an appointment to go and see our GP, but I don't know why. We went to go and see him anyway, but it didn't make me feel any better about the whole situation. I became very shy and I didn’t want to say anything to him, if anything the meeting made me more upset and depressed because 'we' (a.k.a. mum and dad) accepted an appointment to go and see a psychologist, to help me cope, but I don’t know what good it'll do for me. There was also a bad suggestion about going to see other people my age that had had to go through exactly the same thing. What good would that do? Don't these people understand? I don't want to have to cope with it. I want it out, and I want to get on with the rest of my life without this thing there in my head every day and night.

The doc kept on asking me questions about it, but I didn’t want to say anything. I didn't feel like saying anything, and I didn't know how to express what I'm feeling. What would it matter what I’m feeling anyway? No one would listen to me. They've already made up their minds (and mine for me) about the op and so why would they bother listening to me about what I want or think? I really don't see why I should bother telling them anything about this, because they don't care. They make out like they do, but I’m not convinced. Anyway, why should they? I’m a case that isn't a necessity to be operated on, so they won’t. They have no incentive to care, and they must see lots of cases a lot more severe than mine, so why worry? It's too much hassle for them – I'm too much hassle. I’m not worth the effort or the time. Just another mild case that has no importance whatsoever.

It doesn't matter to them that I worried my friends with what the first doc told me, and then confused them by telling them what the second doc said. My friends asked me questions that I couldn't answer – how bad did that make me feel? They probably thought me a liar. That makes me feel even worse – worrying them for no reason, and then not being able to explain to them why and what's actually going to happen.

I'm now really frustrated because the second doc said I would come back in 3 months' time and have a second MRI scan, to see how fast the tumour is growing. If it’s growing more quickly than anticipated, he said he would consider surgery, if not; they'll monitor it with scans every 3/6 months! Doesn’t he care that if the tumour has grown in 6 months and I undergo the op then, that I might miss key stages in my GCSE courses?

I hate coincidences

story added: 13/04/2007

The next week passed very slowly and awkwardly. In the lessons, all I could think about was this tumour, and in some lessons like textiles, it came up in some of the most unexpected times. Some girls were messing around and one said ‘Leave me alone I have a BRAIN TUMOUR’. This hurt me a lot emotionally. Did she know? Was it just a coincidence? Whatever it was, I felt really depressed about it. I couldn’t talk for the rest of the lesson because I was so upset. I still hadn’t come to terms with it and there this girl was making a joke and a laugh about it! I was furious with her for even thinking that it was funny and all of the friends for laughing.

I couldn’t stop thinking about the tumour. I really wanted this operation, so that I’d be okay for taking my GCSEs in 18 months’ time, but I was worried about having to go through chemo though. I think one of the side effects is hair coming out. This is absolutely fine for guys in my position because it’s socially accepting for guys to be bald, but girls? What would people in school say and think? But I don’t care about that; well maybe I do a bit. I want to be better again, and if chemo is the way to go, then I’ll have to cope with it.

Shock number 2

story added: 13/04/2007

A few days later, the paediatrician from the hospital rang us up and asked us to come in at ten that morning. This came as a bit of a surprise, but as we had a previous appointment booked for the next day, I wasn’t too worried. I just thought that he had got the results and wanted to tell us sooner.

Dad and I discussed the results on the way to the hospital: how it was a good thing that they had found this lump because they could now cure me of it and I would be a normal teenager again.

When ten came, a nurse showed us through to a different room to one we had been in before; it was a ‘family room’, as was situated down the corridor from all of the consultants’ room and the waiting area. I thought this was odd and began to get suspicious. I knew it must be bad news after we were taken into this side room, away from everyone else.

Our paediatrician entered, followed by another doctor and a nurse. He introduced us to the second doctor and explained that he was a specialist something or another, and to the nurse from the hospital’s Disney ward.

He began to ask me curious questions like, ‘have you been vomiting?’ and ‘getting headaches?’ I wondered why and he produced some small x-ray like shots that had come from the MRI scan. He began to explain what everything was on the pictures and showed us where they were. He explained that this was the lump and it looked like a brain tumour. He began to talk to Dad in some detail about it, while the second doctor examined me. I wasn’t really paying all that much attention to him. My mind just went blank and it kept on replaying the words ‘brain tumour’ over and over again in my head. I couldn’t believe it. I couldn’t have a brain tumour.

He explained that it would need surgery to be removed and that chemotherapy would be needed afterwards. I was able to hold back my tears, but with great difficulty.

After about ten minutes, the nurse took me out and measured my weight, height and blood pressure, as the paediatrician and the specialist doctor wanted a private word with dad. I was kind of cross at this because I felt like they weren’t telling me the whole story; concealing the truth from the most important person. Why couldn’t they tell me too? What could they tell Dad that couldn’t be told to me?

The nurse was very friendly and helpful. I tried so hard to keep a happy face, but inside I was screaming in anguish. I had just been told I had a tumour and I was shocked, scared and angry.

The nurse and I went back into the room. I was told that they were sending off the scans to a Children’s Hospital that afternoon and I was told that we should receive communication from the hospital within the next week. The paediatrician suggested that we were shown around the Disney ward. I didn’t feel like doing anything but sitting down and crying, but I went round anyway. It was very nice; definitely a children’s ward, with bright colours and pictures everywhere.

When we eventually left the hospital, Dad suggested that we have lunch out; I didn’t want to go back to school. He said he had previously rang mum at work and told her to come home straight away, so she’d be at home when we got there.

We got home, mum greeted us cheerfully, but I ignored her and went straight to my room and got changed out of my uniform. I wasn’t really bothered about anything apart from this tumour. I cried at three different times that day. Even Dad let out tear or two by the end of the day, and I have never seen dad cry, and I had to comfort both him and mum.

I didn’t want anybody told about the tumour, but Dad said people had to know (in other words, he had already told people). Both his and mum’s bosses were told, both of mum’s sisters and her mum were told, Dad’s eldest sister was told (though I don’t know why she had to know) and he said my closest friends had to be told, because they would all worry about me. I hadn’t had to be persuaded to do this, I knew they had to know, and I felt I had to tell them. I needed someone to talk to other than my parents.

Somehow, other members at Dad’s work found out and other members of Mum’s family found out and I was absolutely furious. Why not as well tell the whole world? They all just about knew anyway!

I didn’t get any sleep that night, because I just kept thinking about the tumour in my brain and I couldn’t stop thinking about it. I asked Dad if the tumour was going to kill me, and he couldn’t reply. In his mind he was looking at his daughter, not knowing if she was dying.