OCTOBER 2003

Wed 29 Oct 03
LIFE IS REAL

I thought I had made my decision. I thought I knew what I was going to do, if he ever came back into my life again. I was going to go out with a bang. I was going to finish my story the way I wanted to. I wasn't going to leave while attached to some drip, in a hospital miles away from the places and people that I loved. I knew that if he did come back - he was going to hit harder and faster than the time before and I was going to be the one in control. And I would fight till my last breath.

But when it came to actually having to make that decision I started to doubt my mind. Was I really thinking rationally? Was I just searching for a bit of "drama" in my life? Or did I know that this was I had to do?

It began when I started to have 'panic attacks'. If you've ever experienced one then you'll know that the fact that something is happening to your body that shouldn't be makes you panic even more. But these weren't your average 'panic attacks' - first I would see a "scene" in my head; like a movie being played through my mind or deja vu. Then I would go all lighted head and dizzy. And if I was really unlucky I'd be sick! These 'attacks' were nick named 'panic' or 'stress' attacks. It was put down to all the work at school getting to me and the stress of trying to explain to the teachers that they did not have 'the old Vicki back' (like they wanted to believe).

When we next saw my consultant she organised a brain scan - the results would take a good two weeks to get back to me.

While my scans were undergoing observation I was faced with another problem; my back was being abnormally painful. It was a kinda on going problem but I when it stopped me from walking any distance an " urgent" appointment was organised for me to see my surgeon.

On seeing the surgeon he made it clear that I needed my back imaging (scanned) and while I was in the scanner I may as well have my brain scanned again. He then told us that the brain scan that I had had done
under my consultant's guidance was at least thirty years out of date and would show very little.

So I had the M.R.I. scan. And whilst lying in a tube for an hour I was privileged enough to be allowed to listen to my music; Queen.

When you have a brain scan, a contraption is placed over your head that works as a sort of periscope and it enabled me to see straight into the control room, where my surgeon was sitting watching as the scans
appeared up on the computer screen in front of him. I knew by the look on his face that something wasn't right - and the song playing in the background? No-One But You (Only the Good Die Young). Something
was wrong.

And the results of the M.R.I. scan - I had a lesion on the right side of my brain. 'Lesion' was the word that they used when they had found the tumour on my spine. Something needed to be done and FAST! I was
being referred to a brain specialist at Great Ormond Street Hospital (G.O.S.H.).

But that was obviously not my only problem. There was also a 'shadow' around my right hip or the right side of my abdomen. That also needed some attention but it was only second priority to whatever was going on in my brain.

How was I supposed to react to news like that? I couldn't cry; if anything it was more funny that sad. Unlike last time when I said the ever ridiculous line ' This kinda thing doesn't happen to me' - that comment wasn't an option this time round. This is exactly the sort of crap that happens to me.

Vicki

Monday 20 Oct 03
"SOMETIMES WISH I'D NEVER BEEN BORN AT ALL"

Title - taken from "Bohemian Rhapsody" by Freddie Mercury

My name is Vicki Moore and I'm now thirteen years old. And when this all started I was just an 'ordinary' eleven year old.

Late one night in March 2002. I was admitted into my local hospital. I was having difficulty walking and had a nagging pain in my left leg. Little did I know that that pain was about to change my life and the people and round me.

It was an adventure to begin with. After the first night I wanted to stay another. I was enjoying myself, I didn't have to go to school, I could just lie on my bed and do nothing. But I also wanted to know what was wrong with me. Why was I in utter agony? Why was I stuck on my bed all day and night? Why was my back so painful? But no one could tell me, no doctor they threw at me knew.

I was unable to walk, and wanted to, desperately. My wheel chair was becoming a part of me. I couldn't use my legs; I wanted to do things by myself. Having a shower or just wanting to go to the toilet I needed to be accompanied by my mum or a nurse.

I was in Bedford Hospital for nearly two weeks before they could give me any answers. X-rays and blood tests hadn't shown anything out of the ordinary, but the results of the M.R.I. scan were different.

When it came to finding out my results, I was wheeled into a small room off the ward. My mum and sister were all ready there waiting with my consultant. The three of us all sat together and waited... The answers I had been looking for:

They had found a lump on one of my vertebrae which was crushing one of my nerves and I was going to need more tests, but these tests I needed had to be done in London, at the Middlesex Hospital, the centre of excellence for bone tumours. I was told not to worry. Not to worry! I was disabled and being sent to a cancer hospital with a lump in my back!! And I was told not to worry!! The results seemed pretty conclusive to me.

Days later I arrived in London at what I thought was a palace. How gullible was I? It was an old building, but very big and very grand, on the outside. I was wheeled into the elevator and taken to the sixth floor. I then wheeled myself out as I no longer trusted the Paramedic with the wheel chair.

Carousel Ward - small but bright ward. It was old and unclean but practically empty. There was only one other patient there, a boy, only four years old. I sat on my bed and watched him. He gazed into mid-air and cried continuously. Josh was very ill and every day was a bonus for him - He was my first glance at the life I was about to lead.

After I had the tests I needed (a small operation, where they removed a tiny amount of the tumour to test whether it was malignant or benign), I was sent home, where I was to wait until the results came back. We were given the results a week later. Cancer; an osteosarcoma. I didn't know whether to laugh or cry.

This kind of thing never happened to me. I was a 'normal person'. And the weird thing was; within three hours of leaving the hospital, I was able to walk again.

My treatment started pretty much instantly. The doctors said I would 'sail straight through chemo', no problems, nothing to worry about.... Yeah right!

With two minutes of the horrid orange substance entering my body I was sick, and didn't stop being sick for many months afterwards. Every time I needed the loo, I was instructed to pee into a jug. It was like this for months: sickness, jugs, bed pans, sleepless nights, nausea. Each day I went from one problem to another.  And I was always asked the same question by the doctors:

'How are your bowels?'

and I would always give them the same answer,

'Fine. How are yours?'.

I was allowed home for a two weeks break in between the chemo. And if I was still being sick when I was discharged, I would be transferred to my local hospital, somewhere were I tried to steer clear of when I was home, as my time at home was so limited.

The weekend of the Golden Jubilee was my worst experience at home. The chemo was beginning to attack me in a way you couldn't imagine. My mouth was full of ulcers so bad I couldn't speak, blisters all over my feet so I couldn't walk and just enough blood to stop me from passing out (the chemo was hitting my bone marrow harder each time). Every time I breathed a wave of agony washed over me. But it was attacking my mind too. I was a wreck, at my wits end. I didn't know how much more I could take. All I wanted was to curl up in a corner and die. I wanted to end it; I didn't think I would be able to survive anymore. But something inside told me to leave it, to wait a while. The T.V. had been switched on all day but I hadn't really noticed it till that moment.

Party at the Palace.
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I decided I would watch; might cheer me up for a couple of seconds. Brian May began to play 'God Save the Queen' and that's when my whole world changed. The music took me to another world. I found my perfect distraction, something that I could use to get away from hospitals, drugs and doctors. And watching him play made me realise how much more living I still had to do! Queen were my saving grace and more than once.

I made all sorts of friends in London, but always with the other kids' parents. The dad of one of my closest friends at the hospital loved Monty Python as much as I did. He used to come and sit at the end of my bed and watch the videos with me. We'd just sit there in fits of laughter. He even gave me the idea to name my tumour Spiny Norman after the Python hedgehog!

Making new friends at the hospital was o.k. but I wanted to be with my friends. I told them what was happening, but I wanted them to see what it was like. I wanted them to understand. To understand me. They had all said that they would visit, but they never came. I knew some of them would be scared of me and what was happening. I wanted to show them that I was still the same person inside, a bit more tired than usual, and a little less hair than usual, but that it was still me.

I found company in a young nurse, Jo. We had a lot in common. She was a hockey player like I was, and was into the same music as me (Queen). We would talk all the time when she wasn't emptying a bed pan and I wasn't filling one. I shared everything with her. She was one of the only nurses that treated me like an adult. She wouldn't hide things from me. And it was the reason that we got on so well. I trusted her.

Soon my four cycles of chemo were over and I was getting ready for my operation. The surgeon had decided that the best plan was to remove the tumour along with my vertebrae. The big day was coming closer.

When we arrived at Stanmore, I was excited, nervous and relieved all at the same time. I had survived so far. Even if it was getting hard after each cycle. I was going under the knife at four in the afternoon, we arrived at eight in the morning. We waited around all day. My dad pacing up and down the ward looking at his watch every other second and my mum sitting still next to me not saying a word.

I lay on my bed thinking over in my head what was about to happen. If the operation was a success I would be walking in six weeks; if it went wrong I would never walk again. I was nervous, but tried to look laid back and totally o.k. with the whole thing.

I was wheeled to the anaesthetic room at six o'clock (when is the N.H.S. ever on time?!), my lucky hockey ball clenched tight in my sweating hand. As the anaesthetic went in I started to feel happy - and I began to sing very loudly!! What I sang I can't quite remember.

Next thing I knew someone was brushing my teeth. An insane idea, when someone has a tube wedged down their throat. I was gagging and trying to talk and pushing them a way I remembered that that was now impossible,

I gave in and let them do whatever they wanted to do to me. I was intensive care.

I was stuck there for a number of days, tubes sticking into me, in all sorts of places. I was forced to wear absolutely ridiculous tights, which were meant to prevent deep vein thrombosis. Just how, I really don't know! It just itched!

My surgeon was about to make sure I was doing o.k. He was always popping into I.C.U. to check on me. His main concern wasn't my back, he just carried that I was all right in myself. Then when he thought I was ready for the next step, I was sent back onto the ward.

Back on the ward, I was settled. Ready to start the recovery process, the sooner the better. But a case of gastorenteritis broke out on the ward and we all had to be moved onto the teenage unit. My beloved father was left in charge of 'driving' my bed. It was not a wise move to leave a man in charge of a high speed hospital bed, which has a patient on it, who has just had major spinal surgery. Within minutes of 'landing' I was being sick again. My mum who would had coped perfectly in this situation, had left Daddy Dearest in charge. She was called for immediately.

After that episode I settled into the new ward, but as soon as I was allowed back on the other ward, I would. My sickness had not yet passed and was beginning to present a problem. As soon as I was back on the other ward the doctors seemed to get their act together and I was given the right anti-sickness and the stronger painkillers.

I would stare into space for days on end, listening to Queen and imagining I didn't have a care in the world. Talking to no one and contemplating whether I was ready to walk again. But the pain was still too strong. I was still on a epidural (no feeling in the lower half of my body) and I had to wait for that to come out. When it did I was put onto Oramorph (a form of morphine). And I liked it. I liked its side effects and efficiency in working quickly. I would ask for it, even when there was no pain. But I had to let it go if I wanted to go home. I could only take one set of pain killers home with me and morphine wasn't on the list.

Once I stopped the Oramorph, I felt ready to walk or at least try. Once I was able to sit over the side of the bed everything looked that bit more achievable. Soon enough I was able to stand. That was scary in its own right and took a hell of a lot of confidence - I was being powered along by dream; music.

Standing was easy compared to walking. I wasn't scared; I was terrified, it felt like I was going to crumble into a heap on the floor. I had to try; I blanked everything out around me, ignored all the staring eyes. I cranked my walkman up to the max. and just let the music take me off somewhere else.

I lifted one foot off the ground. I took one step at a time, and slowly got back into the rhythm of it all. Once I had shuffled a meter, Mum couldn't keep me still, and by the end of the next day I could walk the length of the ward and back to my bed.

I left Stanmore four weeks before predicted. Just to prove the doctors wrong. I was only home for a short time, before I was sent back to the Middlesex for more chemo. I was being thrown back to the lions after I had achieved so much. I was terrified about what was about to start again.

After one round of chemo at the Middlesex, I was told that all the chemo I had had so far hadn't worked. The tumour was 'alive' when it had been removed. Which meant it could have sent more tumours out, floating around my body.

There was only one more type of chemo that I could have and there was only the slightest chance that it would do any good. I gave the docs. the benefit of the doubt and had the chemo. And amazingly it wasn't as bad as it had been.

After that was over I started six long, hard weeks of radiotherapy. The doctors 'predicted' that I was going to have some ill side-effects! Ha ha - they got it wrong again - I wouldn't say it was a breeze, but it was easy compared to the chemo.

After all the radiotherapy was over, all that was left to do was to see if the cancer had spread. And where was it most likely to have gone? My lungs. If it had, it would mean starting a whole new cycle of chemo and another year or so off school. And then it would never cure the cancer - just lengthen my life. I wasn't going to do it. If the cancer had decided to stay, it would have won, and there was no more I could do. I made the decision that I wasn't going to have anymore treatment if I needed it. And it seemed that I was the only one who could make that decision. I was prepared to throw months of work away. But I wasn't giving in to the cancer. I knew that my scans where going to be clear; they had to be.

When we were given the results, it was like being thrown into the deep end of a pool and told to swim. I was free falling. I was no longer an oncology patient. My life was no longer being led my doctors and surgeons. I was free from cancer and able to be me again.

But what was I to do next? Pick my life up from where  I left off? How could I? I had changed so much. I  wasn't the same person as I was that night I went into hospital for the first time, I was different, I am different.

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Everyone is effected by cancer, whether they themselves have it, or someone in their family has it. Some peoples stories don't end the way they wished for. I know my story isn't over yet. I wasn't 'normal' again the minute I walked out of the hospital door - and people seem to find that hard to come to grips with! There is still a way to go before I can consider being 'normal' again.

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Why have I told you all of this?

My story is my message: Never give up! no matter how big or small the struggle may seem!

Vicki