NOVEMBER 2003

Fri 21 Nov 03

(Sent Thur 20 Nov)
I WAS FLYING TO CLOSE TO THE SUN?

This is the hardest part of my story to write. And I think you'll understand why, from the words above.

I'm not going to write in great detail what is about to start, but I will try and let you glimpse a little bit of the life that I am leading now.

Here we go.....

The 'limpet' in my brain was a tumour and more importantly a cancerous tumour. But what's the problem? They've taken it out, it's no longer in my body, so surely it's no longer a problem? If only it was that simple. Like before when they had removed my spinal tumour when it was 'alive', there was still a chance that there were cancerous cells surrounding the site of the tumour. The suggested solution - more radiotherapy. Radio active laser beams bouncing off my brain; the side effects would be fatal. Major brain damage.

I was told to put this problem "on the shelf" for the moment!!!

The trouble around my hip? This is where things start to get complicated.

It's another tumour. It's osteosarcoma. It's cancer.

The doctors really know very little about the bugger; which means providing me with a steady treatment plan is in fact impossible.

They were offering me chemo. Three times the intensity that I had first time round. And like before there was no guarantees that the treatment would work. There are no guarantees in this business. I couldn't start to imagine what I would be like to be that ill again.

I was given three days to process all the things that had be thrown at me and then make my decision once and for all. I had spent such a long time talking about it and thinking about it, saying the actual words is a completely different emotion. Imagine it like this:

You're in a crowded room, in front of you is a podium, you stand up and lean towards the microphone and the words just tumble out "I'm accepting the fact that I am going to die young." That's what it feels like. A death sentence.

At first I wanted the doctor to give me a time scale.

If I wasn't going to take the treatment I needed to know how much or little time was I looking at? But half way through starting the sentence I realised that I didn't want to hear the answer. I'd be living my life on a countdown. Working to a 'deadline' (excuse the pun). Every day would be a pressure on me. No one else knows when the lights are going to go out, so why should I know.

So many people believe I'm giving up. That I'm admitting defeat. That I'm throwing it all away. I know a lot of them believe me to be a coward, running away from chemo, because I'm scared of it. Of course I'm scared of it, wouldn't you be? But I'm facing up to the truth. Either way I'll loose, one day we'll all loose. But why run from something, when you can run to it and slap it in the face.

Sometimes I think I'm being selfish. I've lost friends to this disease. Friends who never lived past their tenth birthday. The one thing they wanted at the end, was that smallest hope - they wanted the doctors to offer them more treatment, but for most of them the offer was never there. They didn't have a choice. I have a choice, and when I think of them I sometimes feel that I should take the treatment - do it for them.

But I can't live my life for someone else.

Do you have a list of things that you would really like to do before your end? Maybe start a family. Learn to play a certain guitar solo. Finish school. There are endless things you might want to do. I always have a list of things I would love to do. My mum calls them my "latest schemes" and I call them my "newest dreams". My mum mentioned to the doctor that I had a very definite list of things I wanted to do. Since I had found out that I was "in trouble" there were fewer, but more unreal things on my list. I was asked to write the list down. Dreams that might become a reality.

(In no particular order)
Finish the album with my band 'The Bohemians'.
To be there at the launch gig of the album and to play
our music LIVE.
Hear Eva Maria Cortes sing. In fact to hear the whole Spanish 'We Will Rock You'.
To record 'Last Trust'.

It's not a very long list. And one of my wishes has already been granted. The other dreams the could come true are washing in and out like the tide. One minute they are close the next minute they're gone. Out of reach. Perhaps some of them were only ever meant to be dreams. But if one more could be granted, I know
which one I would choose. But I'm not sharing that with you.

I spent the first few days after my 'final hearing' at home, hidden in my room. I spent a whole day starring at my guitar. Wanting to hold it, wanting to be able to love it again, but I was still afraid of it. Days disappeared and I hadn't done anything.

But it suddenly dawned on me that the whole point in refusing the treatment, was that I could live my life, not dwell on my death.

I made a huge leap of faith - grabbed my acoustic guitar, rang up a friend and we arranged a recording session. And playing my guitar, I felt fresh. It was like my batteries had recharged and my fingers were ready to play again. Although when I pulled Baby B out of his case, I expected some sort of intense pain to run through me. In fact all I felt was a wave of happiness.

Then came the once in a life time trip to Madrid.

Three days away from the telephone, the nagging relatives, the realisation of the truth. An escape to my safe world. I would say a memory that I will remember for the rest of my life, but as I'm not
looking at a very long one, I'll phrase it differently, A memory that I will always keep close to my heart.

I'm starting back at school. But let me make one thing clear, the school system means nothing to me.

I'm not going there learn, to be hypnotised into believing that exams, marks, and education are incredibly important in my life. In fact in the scale of things they mean nothing. But it depends on whether you believe knowledge and intelligence are the same thing.

My friendships at school are different now. I'm closer to people who I was once very distanced from and I'm drifting away from people too. But friendships are always roller coaster rides. Here is a theory for you, you may have already heard it before but in a different context...

Everyone is tied to their friends by a piece of ribbon. We all own our own ribbon and we are tied to the end of our friends ribbon. Knotted in the middle.

Sometimes that knot becomes loose and sometimes its tight (and maybe it can become too tight).

And I believe that there is one person in the world who is connected to the same piece of ribbon as you - one continuos strip. This is beginning to sound like the 'soul mate' theory, but that is to do with love, this is to do with trusting one person with your deepest emotions.

I'm beginning to feel that some of the ties between me and my friends aren't strong enough to support our friendship through this situation. And I'm swallowing that idea that maybe I need to untie some of the knots, before they are ripped apart. It's going to hurt.

I never imagined this life to be an easy ride, but I never contemplated the idea that so many things could turn against me. People think I'm so "grown-up", so "mature", and perhaps in some ways I am, but deep inside me I'm still only a child and I need a body to hide behind and a hand to hold. The body I have is a mean guitar, when I'm behind it I'm hidden from my enemies. I've learnt to love it again. And I have a hand to hold. That' all I need.

And heres something to see me through...

"Everything is going to be okay." Brian May

"This is not the end. It is not even the beginning of the end. But it is, perhaps the end of the beginning." Winston Churchill

Sat 08 Nov 03
KEEP YOURSELF ALIVE

So the nightmare began.

I had to keep my problem pretty much to myself. I wasn't allowed to tell my friends at school - the teachers didn't think the girls would be "able to cope" with the news. Damn good job that I had some 'adult' friends who I could talk to. If I'd had to have kept it to myself I would have just collapsed under the pressure.

I needed away of explaining to myself what the 'mass' in my brain was. I needed a way of imaging it. Like with Spiny Norman, he had been a hedgehog. I searched everywhere for a name, a characteristic.... the closes I found to anything logical was a 'limpet' or even a 'sea urchin'.

Everything moved incredibly fast. The following week I was travelling back up to the Middlesex Hospital to have a biopsy on the 'lesion' that was situated somewhere around my hip. And while I was waiting for that someone was meant to be organising a biopsy on the 'limpet' in my brain. But we all know how the NHS works. It doesn't happen as easily as that.

First problem we encountered when we got to the hospital - I had been upgraded to the teenage ward and we had the job of locating it. Then when we finally found the ward; they weren't expecting me. Apparently I was meant to be at Great Ormond St. After we got that whole fiasco sorted and I had unpacked my things into one of the side rooms; it was getting late...

well it was eight o'clock and too late to think about anything. Espcially doctor's examinations but they apparently had to be done. I was forced to trudge through my grim medical history; explain to the doctor why I needed to be in hospital, what I was hoping to gain from my visit etc.

It was hard trying to recount the previous year and I was tired. I curled up on the bed and tried not to think about what was happening to me - but that wasn't an easy thing to do.

The doctor then decided that she was bored and would take pleasure out of draining some of my precious blood.

Once upon a time my blood tests took a matter of seconds. The needle went in the blood came out - no hassle. It didn't hurt and my hands didn't suffer afterwards - times change.

My veins are scarred and by the time the doc. had finished stabbing me with numerous amounts of needles I looked like some sort of junkie.

In the end it got to much to handle and I broke down in tears. I was left in peace. And what did I do to try and stop the flow of tears? Found my music. But for some unknown reason it had the opposite effect and made the tears flow hotter and fast down my cheeks.

The whole Middlesex episode was a disaster from the word go. And what really bothered me was the way the consultants would talk about the brain operation. It was no longer just going to be a biopsy - the surgeons had decided that save having to 'go in' twice they would just whip the thing out and be done with it.

And when was I going to be having this delightful op? The answer to that changed every few hours or so. In the end it was "Whenever we can fit you in."

They were talking like it was the extraction on a splinter not the removal of an unknown mass from the nerve centre of my body.

Id taken my guitar with me. My weapon - the thing I use to fight off all the crap in my life. But when it came down to it - it felt too blunt to even scratch the surface of my problems.

I sat in my room with it; ran my fingers over it's neck, tried to think of something that I could play - nothing came. I tried chance, just playing a few random riffs - it felt like every string I hit was the wrong one.

It was almost embarrassing to know that I owned such a beautiful instrument but couldn't play it. I locked it back up in its case and left it in the corner of my room. I couldn't bare to think about it.

If the two new 'lesions' were cancer - I was going to have to make my final decision. It played on my mind all the time. Every second. I wanted someone to tell me what I should do. But if I was honest to myself my decision was already made.

Then came the tricky bit - brain surgery.

Great Ormond Street Hospital was a thousand times different to the old Middlesex Hospital. G.O.S.H. is a children's hospital, everything is designed for the kids; even the nurses.

My new home - Parrot Ward: Neuro-surgery. Fourteen beds; ten side rooms and four beds on high dependency.

It was clean, it was warm - it was everything the Middlesex wasn't.

I was sitting on the little couch in the corner of the room, under the window. I was miles away; The minute I plug my ear phones in it becomes my force field; no comment, no scary thought, no fear can penetrate the sound the fills my body.

The first doctor we met was the registrar. He wandered across the room and sat down with me. In his hand was the 'contract'. The consent form. It tells you what the docs. are planning to do to you and then it lists the number of things that could go wrong.
It starts with the higher statistics first - so the less fatal factors then they get that bit grimmer.

And the last two things on the list 'coma', 'death'.

I had to sign my life away.

The night before the op I had a special visitor. A special friend. You've prbably guessed by now who it was. Brian. I had a chance to talk to someone about it all. Someone who I knew would listen to me. It wasn't until he said he had to go that I realised how
scared I was about the next morning. I couldn't help thinking that that was going to be my last night. How do you say goodbye to someone knowing that you might not see them again? But if you think about it - you have to do that every day. We could be hit by a bus or killed at any time - every goodbye could be out last.

After he'd driven away, I went and hid in the gardens. I wasn't read to face the music, just yet. I didn't get any sleep that night

I've had my fair share of general anasthetics. And each time I make a complete prat of myself. If I don't start cracking stupid jokes, or talking about something really trivial. I'll start to sing. This time I didn't have the energy or the enthusiams to say
anything. I just clung tight to my teddy and closed my mind off to the world and waited for it to happen.

Coming round at the end of it all was strange.

Nothing quite prepared me for the rush of emotions that tore through my tired body. I was awake, I was breathing, I was alive. And what was the first thing I said? "My brain hurts."

I had three tubes in either hand. One in my foot (they‚d run out of space on my hands) and then I had the king of all tubes - one sticking out of the top of my head. I had a huge bandage rapped several times around my head, with all my hair sticking out at the
top. I looked ridicolous. Like Mary Sheliey's 'frankinstein'.

A few other patients were asking their parents for mirrors so they could see what they looked like. I thought Id pass on that one. I could just feel how swollen my face was I didn't need a mirror to prove it

The night after the op the nurses were hassling me to go to the toilet. People kept threatening me with unpleasant tubes - I practically jumped out of bed.

Have you ever experienced a bad head rush?? That is nothing to the feeling you have when you try and sit up right after brain surgery.

Following morning nearly all the tubes had been disconnected.

Managed to wobble to the bathroom and what do you find in nearly all bathrooms? Mirrors. I hadn't imagined that my face could have swelled as much as it did. I looked like I was growing an extra face. And my eye was beginning to close up under all the swelling. Scared the beejezus out of me.

The head bandage was uncontrollably itchy and by the fourth day I was so sick of scratching a looking like some kind of ape that I just took the damn thing off.

How long would you predict that I would have to stay in hospital for after major brain tampering?

- Wednesday I was pretty polaxed and floated in and out of consciousness. -Thursday I began to resemble a human.

- Friday I was up dressed and jumping in and out of the bathroom to call people on my mobile ~ let me just say that the rule of no mobile phones in a hospital is rubbish. They don't effect equipment; the hospital just want you to pay extortionate amounts of money in their pay phones. And the surgeons use them on the wards and by the the theatres all the time. And another bit of advise... if you ring someone from the bathroom they know where you are, you voice echoes!

- By Saturday I was beginning to feel more like a zombie than a human. I could hardly see out of my right eye when I woke up. I was shattered. A certain member of my family couldn't understand why I wasn't and didn't want to go home. I think the phrase he used was "Well what's wrong with her?" I wasn't ready to go home. I wanted to but if I just didn't feel ready to take that big step.

- Sunday I pulled myself together. And I'd made it home by the evening.

What next? wait. The waiting game - don't we just love it. It was going to take a good few days to get the results back on my hip biospy and the tests that were being done on my brain 'limpet'.

I spent hours in my room, thinking, dreaming, praying, sleeping, crying.

There was nothing else I could do.

Vicki