Amy's Journey

Amy Nicholls 25/01/1989 - 09/02/2009

2009-04-13T21:02:00.003+01:00

Amy fought long and hard, against this thing called cancer. She was determined not to let it beat her. Very sadly Amy lost her fight on Monday the 9th of February 2009. Although in a way, the cancer beat her in the end, in another way it didn't, cause even though she is no longer here in person, she will live on forever in our hearts and minds and will never be forgotten. This is a copy of Amy's testimony, that she wrote when she was baptised, on the 4th of January which seem to sum up, the way Amy saw things:

“I've heard it said that when God created each one of us our outcomes and destiny's were always predetermined. Our life was already planned out for us, like an unopened book just waiting to be read. I kinda like this way of looking at it and have always gone by the term "even if the destination is predetermined, it's the journey that counts..and what a fun journey I’m having so far.
I also believe that we are sent to earth with a set birth and death date. God knows what is going to happen at each and every turn of our life and we through him must complete whatever we were sent to earth to achieve, then once completed, he calls us home.
I also like this way of looking at life.
I also now know what my mission on this earth was, mine was to face a big battle and show people that even in the face of such hardship and adversity, with a boat load of courage, strength and a smile on your face you can get through anything, achieving many other goals, aspirations and having a damn good time along the way. Oh and not forgetting putting 100% of your faith and trust in the lord, knowing he is there walking beside you every step of the way!
That's my mission, that's my goal and this baptism? It's just another page in the book of my life. I hope you enjoy sharing this page with me today.
You see to me; Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, totally worn out and proclaiming,
'WOW, WHAT A RIDE!!!”

I hope that these blogs will bring some comfort to those who read them, and will be an encouragement to others who are going through a similar fight.
Sleep well our Angel, till we see you again, in a better place xxx
Andrew, Kim, Matthew and Alice
Amy's family xxx

www.justgiving.com/amynicholls

What To Hold On For Now?

2009-02-01T20:11:00.003Z

People said i seemed well at Christmas and then again at my baptism a few weeks later.

Was i well?
Not really, but i guess i felt it at the time.

I know since then i've got a lot, lot worse.
My breathing is my slow killer and it doesn't seem to be letting up anytime soon.

One person at my church got upset the other week, as they thought me being dunked when i had my baptism had been the cause of my rapid deterioration....it really wasn't.

I think since the news of me not being around much longer started there were certain things, not really made public, that i knew in my mind i really wanted to try and be around for.

Two of the more recent events were those mentioned above...
Christmas
and My Baptism.

I think that's why i've got worse since then, i havn't really got any more things, planned or unplanned to really focus on. Sure everyday i should focus on but it's not the same.

I recently got to my 20th birthday. I wanted to make it to there and i achieved that. I knew i wouldn't make the milestone that is 21, but to me, 20 has been a bigger milestone than any that have passed or will have done.

I made it. And for that, i couldn't be happier.

EDIT: I just realised that one of the things on my "list" i wanted to do was leave a legacy.
Pleae check out this page and with anything you have, help me leave even the tiniest piece of a legacy. http://www.justgiving.com/amynicholls

Slow Dance...

2009-01-26T20:08:00.002Z

I got sent a chain email the other day. The thought was there but it was obvious the email had been tweaked many a time over the years. Here is the poem that was included in the mail, guess through all the stupidity of chain letterss the real message are still there if you look hard enough....

Slow Dance Poem

Have you ever watched kids
On a merry-go-round?
Or listened to the rain
Slapping on the ground?
Ever followed a
butterfly's erratic flight?
Or gazed at the sun
into the fading night?

You better slow down.
Don't dance so fast.
Time is short.
The music won't last.

Do you run through each day
On the fly?
When you ask How are you?
Do you hear the reply?
When the day is done
Do you lie in your bed
With the next hundred chores
Running through your
head?

You'd better slow down
Don't dance so fast.
Time is short.
The music won't last.

Ever told your child,
We'll do it tomorrow?
And in your haste,
Not see his sorrow?
Ever lost touch,
Let a good friendship die
Cause you never had time
To call and say, "hi"?

You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last.

When you run so fast to get somewhere
You miss half the fun of getting there.

When you worry and hurry through your day,
It is like an unopened gift....
Thrown away.

Life is not a race.
Do take it slower
Hear the music
Before the song is over.

Our Own Little System...

2009-01-19T19:16:00.001Z

So we're getting things down to a system. Maybe not an easy system, but one that seems to work.

Cleaning up each morning isn't easy. It has to be done. And that's the system I'm talking about. Old clothes off, fresh clothes on. Hygiene, hair, trying to take care of things the way I used to do it.

I couldn't do any of that without mom's help - something I hope she realises every day.

So, all in all, this seems to be working.

I'm pretty lucky.

Losing Control But Not Giving In...

2009-01-15T19:08:00.001Z

How will this go? How do things play out from here? What happens next?

I don't have the answers to any of those questions right now. I'm sure the answers will become apparent at some point, but we're not there yet.

I do see changes in my body. I'm not as strong as I was a few weeks ago or a few weeks before that. I need more help doing some things.

Getting up the stairs for instance. I used to go up and down them without really thinking. Well, those days are over. I need to plan ahead if I can, make sure there's someone else there to help me up them, oxygen in toe.

It's just another little loss of control. A loss of freedom that the cancer has caused and I hate it.

It scares me too. How far will it go? How much of my strength will the cancer steal? Will I end up bed-ridden?

On the other hand, I have to keep going. I have to move around, go from chair to chair. I'm not bed-ridden now and I can't let myself give up.

So as it gets harder and harder to do the same things, I think all I can do is work a little harder to do them.

And make the cancer work harder to try and stop me.

New Year..

2009-01-09T20:07:00.001Z

So we're starting another year of fighting with the "beast" To my mind, that means fighting dirty. Hit it when it's not looking. Jab it with radio when it doesn't expect it. Zap it, fry it, freeze it. This is no time to shake hands.

As we start this new year, it's a time to remember that everything is riding on this fight.

Giving Thanks this Christmas..

2008-12-24T17:55:00.002Z

I have so much to be thankful for.

That might sound funny coming from someone with cancer. We have each other - the greatest gift of all. We have our loved ones. My doctors and their skills. I can still laugh when I should, and cry when I need to. And most important...I'm still here.

I may have my complaints, but I'm grateful for what I do have, however little it may be. Some people could only dream of what I have, I'll never forget that.
But my Christmas wish for all of you, those fighting the disease and those standing beside them, is that you find some healing, some peace. Even if it's just for an hour. I hope that Christmas dinner, or opening presents, or a silly family tradition, something will take your mind off the illness and pain. Just an hour or two of normalcy would be one of the best Christmas gifts ever.

I wish you all a wonderful Christmas x

A Snapshot In Time...

2008-12-11T19:34:00.002Z

I live by a different calendar these days. I measure my life by the next appointment, the next lot of radiation, times to take my medication.

I realise that the rest of the world is going on about its business. Going to work, on holiday, shopping, all the usual stuff. My friends are all working or at college, measuring their lives by new assignments or reports due. All the things I used to worry about.

I guess today I'm really feeling the split between Cancer World and the normal world. Cancer World, my world, looks a lot like the normal world. But it is so very different.

I've gotten out of the house a few times, but I've pretty much been house-bound for a while now. I know that outside these walls, life goes on. But it's strange not to be part of it. I can almost feel the hum, the rhythm of everything that's happening out there.

When I first got home, the trees in my backyard were a riot of autumn colors. Now they're mostly bare, the leaves littering the ground. Time is passing in both Cancer World and the normal world. I just wish they didn't feel so far apart.

Christmas Is Coming....

2008-12-04T22:11:00.002Z

I can't believe that in three weeks it's Christmas Day. It feels like this year, more than anything it's been a long time coming.

To me christmas this year isn't about flashy presents or wanting things that we can't really afford, for me this year it's about spending time with family and just generally having fun the good old traditional way. This consists of eating way too much, drinking a tiny bit of tipple then merrily gathering around the television to watch whatever Christmas films they decide to put on this year - and you know what? I wouldn't want it any other way...

Just to be able to put the decorations up this year and start blasting out the christmas tunes was a good enough reason to make me smile. Even having a tree, any tree to me is really what's important. Big or small, I've always thought of the tree as a symbol of hope and wonder. That's especially true this year.

And just because i can...

The Cancer Rollercoaster...

2008-11-24T18:41:00.000Z

We have talked about the roller coaster that is cancer. I think this is a perfect example. A couple of weeks up, improving, then a couple of weeks down, that improvement lost. I've gotten used to the coaster, at least as much as I can. But it sure would be nice to get a nice level stretch for a while to let me catch my breath, settle my stomach and get ready for that next drop. But this isn't that kind of ride I guess. No slow spots, no timeouts, it's full speed ahead every day.

So all I can do is hold my hands up in the air and yell as I ride down this radiation hill, knowing that on the other side there will be a long climb upward to the top of the next hill. Or have I carried this metaphor too far? In any case, I've
given up the hope that the Beast will slow down at all. So I just have to keep up with it. Actually, I guess I'd better try to stay one step ahead.

Sunshine? Just what the doctor ordered!

2008-11-18T20:06:00.002Z

Something so simple, yet even the smallest amount can be a recipe for clearing the head, healing the pain or just helping us get through the day.

What is this miraculous cure i hear you cry?!

SUNSHINE of course!

It's what we all need to lift our spirits and make us feel a hell of a lot better!

Sunshine and smiles...just what the doctor ordered.

The Gift Of Time...

2008-11-12T20:07:00.001Z

How do we measure our lives?

In time? Days, weeks, months, years?

That takes us back to the "How long?" question. When you first learn that you have cancer, you want to know how much of a life you still have ahead of you. How you'll spend that time is something to think about later.

Once the shock has worn off you do start thinking about how you want to spend that time.

There were books I still wanted to read, places I wanted to see. There were conversations to be had with good friends. There were evenings of laughter still to complete.
And then there is the fight itself.

I still don't like the word "fight", but I haven't come up with a better one yet. Confronting our cancer, trying to defeat it -- that takes time, too.

Hours spent in machines, or waiting to go into machines. Days or weeks spent in the hospital for surgeries. And there is the time spent just thinking about what has happened to us. What this all means.

But the bottom line here is that I'm talking about how to spend time I never thought I'd have. Time that no one else thought I'd have. And that's a gift to be treasured.

Hard To Disguise The Bad Days...

2008-11-08T20:52:00.000Z

A lot of people have said that several of my blogs recently have sounded very down, that I seem depressed.

I guess that's true.

I don't mean to sound that way, but sometimes I have bad days. I guess that comes through in my writing.

I've been tempted not to publish some of them, but everyone says that if that's the way I feel on that day, so be it.

It's hard not to let everything we're going through get to us sometimes. Some days the burden seems greater, seems almost too much to bear. I know I shouldn't, but some days I want to feel sorry for myself, to give in to the dark side.

But those moments pass. We all have to reach inside ourselves and find some reserve still untapped, some strength that's still there, and push forward.

We have to find the will to take the next step, and then the one after that.

Some days that's hard. At least it is for me. I'd love to be a pillar of strength every day, to never feel or show weakness.

But we're all just human, after all.

Fizz, Bang and Pop?

2008-11-05T21:24:00.003Z

What is it with winter and dull days?

The pain is hard to take at the moment. No matter where i try and get there is a constant uncomfortable feeling that radiates throughout my body.
It's the same pain as before yet as usual when it comes to me, it's obviously worse this time round.

At the moment the days are passing slowly. The seconds turn into minutes; the minutes into hours and so on.

It's difficult. Sometimes it's hard to get up on days like this. Trying to find some sort of norm through it all is getting all the more harder.

I wonder if it would be easier to give up sometimes, let someone else take over and give me the rest my body so desperately needs.

I guess i'm just hoping that today of all days the pain will fizzle out like the fireworks going off around me. All about the big flash and the pretty colours then eventually fading back down to a spark.....if only.

Passing of the seasons...

2008-10-31T19:15:00.001Z

So what should I make of surviving another season? I pretty much missed most of this past summer. I spent a lot of it having treatment, feeling ill and not doing much. Given a choice, I'll take winter any day.

But it does make me conscious of the passing of time, of the turning of the wheel. Time, after all, is precious to cancer patients. It's our currency. This procedure will buy you more time. What more do we need to hear?

Except, of course, there's the whole issue of the quality of the time we buy. But let's save that for another day.

All I want to say today is, Happy Autumn. We made it.

P.S Happy Halloween!

Learning the new life...

2008-10-14T20:07:00.003+01:00

I've developed some new techniques and habits these last few weeks. I know how to stand to get the most amount of air into my lungs while i break for breath. I know how to get in and out of bed in the ways that will produce the least amount of pain. I've learned that using a heat pad on my aching muscles bring a few seconds of relief. For those few precious seconds, the pain just goes away.

I guess I'm learning how to live this life.

It's a little more complicated than my life was before. I have to think about things before I do them, plan how I'm going to do whatever it is I'm going to do. I guess I miss just being able to sort of stumble through life without thinking too
much about it. Something needed to be moved? I'd just pick it up. Not any more. Moving around the house was something I took for granted. Now i have to stop and think before i attempt the things i want to do.

I hope to go back to that life relatively soon, as soon as my body gets to grips with its new way of coping.

I Can't...

2008-10-03T15:15:00.002+01:00

I've never done well with limits or rules. Tell me I can't do something, and that's exactly what I'll want to do. Even when I really don't. It's not the act in question -- it's the rules, the limits, the "can't." So far, I've been pretty lucky with my cancer. The chemo made me very sick -- so sick some days that I couldn't do much of anything. But I've really been able to do anything I wanted, as long as I felt up to it. That's all changed.

We all know what's happened, what the results of the last scan were. At the time i was worried but had the normal attitude of "It's ok, it's another setback; we'll get through" but now things, just little things are making me realise my body isn't always going to cooperate with me and it scares me.

My walking is crap. Ask anyone and yeah i'm slow. I have to be. If i walk too fast i end up stopping because i'm so out of breath. I found my own pace that was comfortable for me. At least i thought it was. It seems now even this slow pace is getting too much for me and that really does worry me.

So I'm having to come to grips with the idea that there are just some things I can't do anymore. Things I always took for granted. I don't like it. I don't like it at all. To be honest, I wasn't planning on doing the insane anytime soon. I just don't like the idea that I couldn't, even if I wanted to. I think the reason this scares me is that it seems like the beginning of what could be a long decline. That list under "can't" will probably only get longer. I don't like it. I don't like it at all.

I think i may need to dig out my list and start doing it...before i "can't"

Running out of Miracles...

2008-09-24T20:30:00.003+01:00

Yesterday was a bad day.

We went for the results of my scan. They weren't good. The cancer has spread and grown even bigger than before. It's pushing my organs around and pushing the frame of my body out of shape, hence all my pain.

We had a talk with my doctor. That was the hardest part of the day. As he sees it, there are limited options as it is. They don't know what to do, so much so, he literally went on google to see what it says on there. Is it really that bad? That's not a good sign. I have a lot of pain and we can't figure out what's causing it or how to blunt it.

All along, we had figured there was a possible way out. A way to maybe control the pain because at the moment, that's all they are interested in doing as they can't do much else. A new chemo, a new way to attack it. But we may be running out of those. The box of miracles may be emptying out.

We're not giving up, but it's getting harder to stay optimistic on a day like that.

Like I said, this was a tough one.

I Stand For....

2008-09-15T13:11:00.006+01:00

I stand for many things.

That song is in my head a lot lately. It's weird but i guess it poses a lot of questions and deep thoughts when you stop and have the time to listen to it.

Lets not talk about me today. I'm feeling great and well it's not all about cancer. It's about much more important things.

Besides, it's kind of fun to do the impossible.

So i come to you with this question; What Do You Stand For?

I Stand For....

and the ability to wear silly hats...

On Hold; For The Moment...

2008-09-10T13:24:00.002+01:00

Waiting rooms, you've got to love them.
My chemotherapy has been put on hold - celebrations all around! On the other hand my counts are dead from the last lot, so in a way that's the only reason i'm not having it but I thought i'd throw in a bit of fun there!

I still have yet to grasp the concept of an appointment because let's face it, they never stick to them.
The waiting area to me always seems like a grim sort of place and even if you've had a full night's sleep a sudden wave of tiredness seems to engulf you, as if you're kind of meant to feel rubbish just by being there.

On the plus side with all these so-called "appointments" though, you get to have a chat with the people around you. Where they are in their treatment? How they're doing? The usual chit chat for a room full of cancer patients.

Some people have just started out on their journey's, while others have finished and are ten years clear of it. They still have to come back for check-ups though, made me realise that even if you beat the beast it still has that one way of trapping you for that little longer.

I had an interesting day today. As I left and said goodbye I said what cancer patients always seem to say to each other in these situations: "Good luck. I hope I don't see you again." That's not being rude. It's saying that you hope they make it, that there won't be more treatment, that we won't run into each other waiting for some other form of therapy or appointment.

And it's true. I genuinely liked the members of my temporary group. I will miss them. But I truly hope we never see each other again.

Stand Up 2 Cancer

2008-09-05T20:34:00.003+01:00

Cancer takes one person every minute. One life in a moment. They are our brothers, our sisters, our fathers and mothers, our husbands and wives, our best friends, our children, ourselves.

http://su2c.standup2cancer.org/index.php

This is where the end of cancer begins: when we unite in one unstoppable movement and Stand Up To Cancer.

Will you stand with me?

Nausea And Tiredness And Crap....OH MY!

2008-08-30T21:27:00.002+01:00

Etoposide - my new best friend...NOT.

I had totally forgotten how rubbish chemo makes you feel. I haven't felt this bad in ages and definately not this sick.
Nausea and tiredness pretty much take over my days at the moment.

It's not fun.

Makes me realise how lucky i've been this past year and how long I've been without the proper strong stuff flowing round my body making me feel shit.

I'm glad I've been healthy enough to do the things I've done these past months and i guess you've always got to come to that other obstacle and just fight through it to get back on the open road...

and I'm aiming for that open road right now...

The Same Old Road

2008-08-26T19:51:00.002+01:00

It was my routine checkup today. The usual "how you doing?", quick bloodtest, booking of vinblastine and we're out of there. Pretty straight forward...normally.

Before my New York trip i was suffering quite badly with some pain in my shoulder. It gradually got worse and the pain spread to my neck and back. I went away on holiday and everything was fine, maybe it was just being away and giving my mind something else to focus on. The last few days have been hell, pain wise. I'm getting little sleep and nothing seems to relieve the aches and the shooting pinches now and again.

I explained to my doctor the symptoms and she has now booked me in for an MRI and a CT scan. God only knows how long they'll take to come through. She also wants me to have fortnightly vinblastine instead of monthly. That i could handle, but she decided to opt for more.

She wants to start me on another drug, etoposide. Now i've had this before, years ago actually, but intraveneously through my vein. She's decided on tablet form and to be honest, it was bad last time....i'm worried about now.

There is a pretty much certain chance my hair is going to come out again (a year of growing it for nothing...once again) and the sickness and nausea is greatly heightened with tablets.

A part of me is just wanting to say yeah if it's going to take the pain away then that's cool you know, i'll just deal with the "bald" look and the sickness but part of me is wondering if it is going to even actually work at all. I mean look at everything else. They haven't exactly helped me get anywhere on this seemingly pointless mission of trying to cure me.

I mean i'm all for quality of life and everything, but surely this is getting pretty pointless now?

Can i be anywhere; anywhere but here?

2008-08-21T20:14:00.004+01:00

New York.

Well what can i say? It was amazing. It was everything i hoped it would be and more. Oh, and it was bloody hot.

It seemed like i did everything and nothing and before i knew it, it was over.
I'd kill to back again, if only for a second. There are things i saw that will stay forever in my mind, like a snapshot of a memory lingering forever.

But what now? Well back to the normal as always. The unknown and winding road of my life.
My pain is back, although it never went away really. I figured that if i took my mind off it, it would go which i obviously achieved while on holiday. Figures?

Things at home are sucky, my dad just lost his job, money is tight and every little thing seems to accumulate into one big argument. It's like everyone is keeping things bottled up and then when it gets too much the contents just spill out everywhere.

I'm kind of looking forward to the hospital next tuesday. It gives me something to think about and if things get decided there, then something to focus on.

At times like this it's no fun to reminisce....but it sure helps.

New York City BABY!!

2008-07-31T14:05:00.002+01:00

It's finally happening, another thing to cross off "My List"

Travelling.

I've always been fascinated by the world, in all it's wonder and have wanted nothing more than to go and explore it.

I'm off to New York City! The crossroads of the world. The lights of Broadway. The buzz of the city. Am i excited? Fuck yeah! More than you can ever know or imagine.

Just the thrill of knowing i'm going to experience so many new and amazing things while i do this makes all of the struggles that go with it seem so worthwhile.

I've got a lot of new decisions and turns to make when i return from this trip and maybe, just maybe, this might be the one and only trip i ever get to take. So i've got to grab it with both hands and jump right in. Screw everyone. Screw the doctors, screw their decisions and their reasoning. For once i couldn't really care less. After all, this is my life and i don't really want to be here to just survive; i want to live!

I guess, when it balls down to it...

There is no holiday from cancer, however if it's going to come along with me, the least i can do is show it a good time. And boy, will i show it a good time. It may just die from all the excitement.

It's Not All About Cancer....

2008-07-27T11:51:00.002+01:00

It's a lovely sunny day today.

One of those days where you can just lazy around and enjoy the atmosphere of a proper british summer day.

People happy, people laughing, people spending time together and most importantly people sharing memories.

It's a lovely sunny day today - and i think i'll leave it at that as i don't really have the time to waste a minute and just for today i don't really have to think about my cancer....

Another year in the life....

2008-07-15T23:25:00.002+01:00

Around this time last year i was told they were running out of options for me, I spent a lot of time thinking about how to tell people. How do you break that kind of news? How do you put that fear and sadness into words?

Well, it's a year on and I'm still here.

Let's face it, I didn't expect to still be around. My doctors certainly didn't expect me to be. My friends and family were scared that I wouldn't still be here. But here I am. So how do I explain that?

I have good doctors, the best in the business. And they're willing to try their damned hardest for me.

I have the thoughts and prayers from all of you. I am truly blessed. Or to put it another way, I am truly well-armed when it comes to this fight with cancer.

But how have I managed to beat the odds? Why didn't I just die when my first doctors predicted I would?

I don't really have an answer for that. I'm stubborn, and I'm sure that's part of it. I'm pretty strong, and I'm sure that's part of it, too.

And I still have more living to do. More blogs to write, more places to see, more laughs to be had...that keeps me going too.

But when I stop and think about it, I realize it's just not my time yet. I still have too much to do.

Here's to another year.

The Hard Part....

2008-06-25T22:39:00.003+01:00

I've been in a lot of pain recently. The cramps in my arm don't seem to be improving and the lack of sleep is really starting to catch up with me. I saw a different consultant the other week and he told me to increase my tablets. If by next week it doesn't get any better, i may go back for a second opinion. There are too many things coming up that i am no way missing!

But it's hard to really concentrate on all that. I've lost a friend this past week, and I guess I'm still trying to make sense of that. Trying and failing.

I don't think the loss of a good friend ever really makes sense. I think it's more a question of finding some way to accept it. That's the hard part.

We still pick up the phone to call them or open up a document to send an email, only to have to remind ourselves that they're gone. Especially when they're young, it's hard not to dwell on how much life went un-lived.

Actually, it all pretty much comes down to one thing: There's never a right time for them to die.

No... old or young, accident or illness, sudden or expected, it all comes down to the same thing. When we lose someone, we miss them.

Emily....

2008-06-20T21:05:00.002+01:00

....when the Angels come, i know that they will treat you well. That they will pull you through and lift you up from all that's held you down.

There's a heaven up there and it waits just for you....

RIP Little girl,

Looks like God needed an extra angel up there in Heaven. I hope you finally get the rest you deserve.

xxx

A Victory In Itself...

2008-06-17T20:52:00.001+01:00

I don't have anything very profound to say today. Yesterday was pretty much like the days before it. The search for relief from the pain goes on. So I wake up this morning to face another day. The pain will still be here. So will the frustration and the impatience. But go back three sentences and there's my message for today: We're here to face another day. Good day or bad, easy or hard, that's a victory in and of itself. I don't think I need to say anymore.

Put On My Happy Face...

2008-06-09T21:45:00.001+01:00

There was an interesting article in The New York Times the other day. It was about the pressure on cancer patients to present a positive face to the world. Give the universe a thumbs up rather than your middle finger. A lot of us feel we need to appear upbeat, courageous, positive, even when we don't feel any of those emotions.

Quite honestly, there are times that I will write something in this blog that is more positive than I really feel that day.

I think we do this to reassure our loved ones, and maybe even ourselves. We hear a lot about how important a positive outlook is. It almost makes you afraid to acknowledge a bad day for fear that it somehow will set you back.

But one of the things I've stressed here from the beginning is honesty -- with ourselves, with those close to us, with our doctors, with each other. I think being honest is far more important than trying to present a positive face to the world.

Now, I'm not suggesting that we wallow in depression or anger. I think a positive outlook is important. I just think we shouldn't pressure ourselves to be upbeat if that's not the way we feel.

Living with cancer, you still have good days and bad. Just like everyone else.

More Than My Cancer....

2008-06-01T19:48:00.000+01:00

When I was first diagnosed, I think it's fair to say that my friends and loved ones were as scared, as disoriented, and as freaked out as I was.

The world had changed. I had become something different. A cancer patient.

A lot of time has passed since then. That frenzy, the panic, has pretty much gone away. I have been changed in profound ways. But in some ways I think I've returned to my old self, at least a tiny bit.

I wonder how my friends are doing with all this. Have things gone back to normal, at least a little? When we talk, even if we don't mention the cancer, are they still thinking about it? Do they ever forget? I hope so, for their sake and for mine.

I was talking to one of my best friends the other day and several times he said, "I shouldn't complain to you."

Nonsense. Of course he should. That's why I'm here. That's why I'm his friend.

And I try not to talk just about my cancer. I am more than my disease. Plus, I don't want to be boring.

Yes, I have terminal cancer. It's trying to kill me. I'm trying to stop it from doing that. Most days that seems to be enough to say about cancer.

The world is full of far more interesting things.

What Gets Me Through...

2008-05-30T23:51:00.000+01:00

Maybe Tonight, Maybe Tomorrow

I heard the news today. It came out of nowhere.
I wish I could run away,
but where would I go?
Is this my destiny? Something so unfair... What will become of me?
God only knows.

And they say the road to heaven might lead us back through hell.
Maybe tonight, maybe tomorrow, we will win this fight and bury this sorrow.
We're so alive, still holding on, not ready to die, so we LIVESTRONG.

My pride is left for dead, as my world gets shaken.
The thoughts inside my head are so hard to control.
I am staring down the unknown, but one thing is certain.
You could break my body, but you will never break my soul.

And they say the road to heaven might leads us back through hell, but we're holding on for more
than stories to tell.

Maybe tonight, maybe tomorrow, we will win this fight and bury this sorrow.
We're so alive, still holding on, not ready to die, so we LIVESTRONG.

Holding Onto That Hope....

2008-05-19T23:10:00.000+01:00

I want to get better.

I don't think about that a lot. I don't let myself. I spend more time thinking about living with cancer, having the best
life I can under the circumstances. And don't get me wrong, I'm a realist. I'm honest with myself. I know what's happening
to me, and what's likely to happen in the future.

But I still want to get better.

A tiny part of me still holds on to the very thin hope that somehow I can overcome this. I'm not looking for a cure. I know
better than that. But I'd love to just have a normal life.

My old normal, not cancer normal. Just for a little while.

Am I kidding myself? Probably.

The chances of the cancer going away, for any length of time, are pretty much zero. But that doesn't mean I have to give up
all my hope. You never know what might happen.

Actually, cancer patients pretty much do know what will happen. When we're given that first prognosis, we learn to ignore
it. And the next one, too.

But the overall theme is pretty clear. The end result isn't really in doubt.

Still, I'm holding onto that hope.

Maybe this is just my way of being stubborn.

The New Realities

2008-05-05T22:14:00.002+01:00

I'm going to get better. I think that's really the dream that keeps me going.

Somehow, some way, i'm going to get better. I'm going to heal. Let's get past the cold hard reality right now. There will come a time for all of us when it's clear the journey is coming to an end. That we're not going to get better. But that day hasn't come yet.

It's clear that some things have changed forever. I used to partake in long distance running, sprinting and used to love the thrill of a race. Now i can barely balance properly let alone run, I don't think I'll ever be able to move the way I used to. That normal is gone. And I can live with that. After all, I don't have a lot of choice.

I guess I've gotten used to feeling bad. Now, I don't mean that to sound like I'm feeling sorry for myself. That's not it. You just get used to your new realities, good or bad. And it is always amazing what we can get used to. That's when you find out how strong you are. Not when you go through a crisis, but when you have to keep going through it day after day after day. When no matter how tough the previous day was, you have to get up and do it all over again. That's when courage comes in.

So maybe some day I'll wake up and feel better. Some side effect will be gone. But I'm not counting on it. I just hope each day that things won't get worse.

And I tell myself that no matter how each day goes -- I win, the cancer wins, or it's a draw -- I can get through it for another day.

Just Another Day....

2008-04-28T19:29:00.002+01:00

Just another day. Back before I got sick, the days seemed to just blur together for the most part. I'm not sure if I ever really took the time to ask myself if today was a good day.

I think I look at things differently now. I've talked about how cancer makes me realize how precious each day can be. How important it is to appreciate them all.

That doesn't mean that every day is going to be a good day. And when we say we try to live each day to the fullest, that can mean just about anything. When I was on chemo, sometimes just getting out of bed was enough to make it a good day.

So I guess today was a good day. I didn't do anything profound. I just got out, went places and had a bit of the good stuff - fresh air! I feel that I need to say something worthwhile. But sometimes all I really have to say is, "Hey, made it through another day."

That's not very profound or even thoughtful, but it is the overriding truth of the day. Today belonged to me, not to the Beast. Today is my day.

Amy 1. Cancer 0.

Long time coming.....

2008-04-20T20:59:00.007+01:00

Wow it has been a while hasn't it?

To be honest, i'd completely forgotten about this blog.

So many things have happened lately and a lot of things were pushed to the back of my mind, this being one of them, and i carried on with what i thought was important.

Only recently meeting up with an old friend did i realise how many people had relied on it.

So here i am once again.......

Last time i wrote here i was going into hospital to have a pretty big transplant. There was a real chance i wouldn't make it through but i pushed on hard as usual and fought my way to the end.

Unfortunately the transplant didn't work. It makes me wonder if it's really worth the effort sometime. The amount of time i've wasted lying in a hospital bed when i could be out there making good use of the time i've got left and really doing something with it doesn't really add up. I suppose i wouldn't be where i am today though, if it wasn't for the people who make that hospital home....

I now have what i guess you can call "terminal" cancer. There is no longer a cure for what i have. So in short terms it means i'm dying. The doctors havn't given me a time limit and in a way i suppose it's a bad thing but if you look at it the way i do, i don't think i really want to know. I don't know how people can put a time limit on something as precious as a life. It certainly helps me now, as it gives me the chance to live every day to the max and not waste a single moment.

It's been rough. I feel pretty beat up. I've had some tough times before, but this has been different. For the first time, the cancer has truly changed my life.

I wouldn't class myself as ill; i'm more alive now than i ever was before.

I still have my off days. I'm tired and exhausted and my body still hasn't recovered from the transplant last year - it's difficult to work out if it ever will. I'm still here though and while i'm around i'm sure as hell going to fight it with all i've got and i know i have a great amount of people still looking out for me....and well you never know, i might be the reciever of a miracle one day!

I know that in the end, it will most likely get me. But at least I know that I've made it work. And there's some satisfaction in that.

Making the most of it!

2007-08-31T11:23:00.000+01:00

I realised i hadn't updated this blog in a while so i thought i'd post about the last few weeks following my last lot of news.

As most of you know i have a pretty big transplant coming up soon. Well before this starts my doctor needed to run a tonne of tests to see how well parts of my body are working ready for all the harcore treatment.

It's all pretty hyper at the moment and i'm getting tossed around for one test after the other.
Yesterday i was at the hospital for two different tests, my heart echo scan and an ECG - oh and also a kidney test.

My kidney test was scheduled at half nine in the morning. I had to be injected with a dye and then hourly for the next four hours i had to return to have a blood test. If my kidneys are working ok, the amount of dye in my blood should have decreased every hour.

Unfortunately my heart scan was not scheduled until 4:10 in the afternoon at a completely different hospital. There was no point going home so we had to wait around a good few hours.
The heart scans are a pain and i won't really go into detail as to why, let's just say you don't have much dignity left after them!

We finally got home yesterday and i was completely shattered. All together we'd been at the hospital a grand total of 12 hours - most of this time was spent doing absolutely nothing apart from waiting around.

We've got a few more tests in the next week including a bone marrow aspirate on monday and a lung function test on tuesday.
Got to go back and see the doctor on the 11th of september, the day after my PET scan, for the results.
Will update here and let you all know how they went.

Until then i'm free from the hospital for that little bit longer, and i intend to make the most of it :)

Last Chance Treatment

2007-08-14T19:07:00.000+01:00

So today was the day.

Meeting my new doctor and finding out what so called "amazing" treatments she had up her sleeve.

Turns out she had only one thing that hadn't been tried on me yet.....a stem cell transplant.
Wouldn't really call it amazing, more like a pain in the ass!

This seems like the last and only treatment that they have to offer and the doctor still cannot guarantee if it's going to kill my tumour. Perfect.

It involves a long and what seems like a painful process.
My body will be blasted with high dose chemotherapy, practically killing every blood cell in my body. I will then be given back healthy cells in the hope that my body will take them and start rebuilding healthy cells. Sounds easy? It's not!

The doctor told me on a scale of 1-10 (1 being the mildest chemotherapy and 10 being the strongest) the chemotherapy i will have to have comes in at about a 9 or 10.
I will be in hospital for about 5 weeks while the transplant takes place and then it will take about 4-6 months to fully recover.
Another long process, oh the joys.

I noticed immediately that i was now in an adult hospital as the doctor was very blunt and straight to the point with me.
She rolled off a list of all the side effects, and during the transplant as i have no cells to fight infection, she guaranteed 100% that i will pick up some sort of virus.
She also told me outright that i may die from it, though apparently there is a much higher rate of survival (like that makes me feel any better)
She also told me my fertility will be affected, i will probably find it harder to concieve children naturally.

Damn what a brain freeze. All this was explained to me in about the space of ten minutes. I then got ushered out for various blood tests and scans.
I'm due a PET scan in four weeks, but until then another waiting game.
Once i get the results of my scan, they want to push straight on with this transplant.

Yes i will be in hospital a long time, yes the transplant might not even work, yes i might die from it....but i know without a shadow of a doubt, i'm not giving up without a fight...and a BIG fight at that :)

BRING IT ON!

Putting it off....only time will tell

2007-08-10T11:49:00.000+01:00

Most of you know that i've been quite ill recently.
These chemotherapy blocks of the ABVD treatment have really been knocking me about.

Last week i finally finished my scheduled doses and was booked in for a scan this week to find out how it went.

I've been putting this blog off for a while as i didn't really know what to put. I'm on another waiting game at the moment and frankly, i want to be anywhere but here.

I had my scan and that all seemed fine, until we went for the results. It seems that the treatment has done nothing, not even touched it, so unfortunately for me my tumour has grown again. A lot bigger than before.

All that treatment. The days of feeling sick and ill. Me loosing my hair. It's achieved nothing. I'm worse off than when i started. What a kick in the teeth.

At that very moment, i was scared. Looking at my picture, at the tumour, at the little blob on the screen that's eating me up, i was terrified.
The doctor was rambling on about the tumour and other things and frankly everything was a blur, one line stood out though and everything else is just a blank,

"We are running out of options and treatments for you"

Imagine hearing that. Yeah i knew this was slowly killing me but i thought we were making progress on my stupid rare tumour stuck inside me, i was obviously wrong.
Just as i seem to be getting somewhere, i get knocked down again and i hate it.

The doctor doesn't know what to do anymore and is referring me to a specialist adult cancer doctor to see if she's got any ideas. He mentioned something about intensive treatment and hardcore stuff like transplants, which undoubtedly means more stays in hospital and once again becoming very, very ill. Oh the joys.

He's last words were, listen to what her treatment plans are and you can decide then if you want to go ahead.
Frankly i'm fed up. I hate these times when you feel like nothing good is going to come of it, and even when it does it gets torn away as quick as lightening.
I don't know if i want to try this new stuff, if it's not going to work is there really any point?
I'd rather feel well than feel really ill and find it's not worked anyway.

I suppose i've got a lot of thinking to do. The doctor phoned this morning and i've got a meeting with this new doctor on tuesday. I admit now, i'm scared. Scared for myself but also for everyone around me. I don't think anyone wants to go through everything that happened already.

Looks like we will just have to wait and see once again.....only time will tell.

The Race Of My Life

2007-07-23T19:17:00.000+01:00

I finally did it. I raced "For Life" once again

This thursday just gone, i had my usual lot of chemotherapy and once again it left me pretty ill. Sunday came and it was the day of the race, i felt really ill and was sick a few hours before it but i knew i wanted to still do it - and in a way i knew i had to.

It sounds ironic but i literally fely like i was racing for my life, and racing for my life i sure did :)

We decided it best to walk the course instead of running it and we officially came last, but the atmosphere was amazing and i was so proud of myself for not giving up. This race means a lot to me, but i wasn't just racing for myself and it makes me feel all the more blessed that i could finish it.

I've never seen so many people all there for the same reason and it's sad, but also extremely rewarding to be able to walk alongside many inspirational people, whether they were there in person or in spirit !

The support shown for us as we crossed the finish line was overwhelming, so many people were cheering and willing us not to give up - even if we were last :)

A brilliant day was had and i know that everyone was definately looking down on us - the rain started to pour the moment we got in the car to come home!

Why i'm Happy...

2007-07-13T14:09:00.000+01:00

People often ask me how i cope, how can you be so optimistic about life, how come you always seem so happy?

The more i think about it, the more i realise how strong i actually am.

I wouldn't really say optimistic, more determined. We're fighting every day. Every drug, medication and chemotherapy that we have is doing one thing, buying us time. It's keeping us alive. Every day we wake up feeling ill or not 100 percent, struggling to get out of bed, we know that's one more day that cancer can't have. As hard as it is sometimes, just getting out of bed in a morning means another day that the beast can't have.

Yes i'm confused about life, i'm confused about what is happening to me. I've been told numerous times that my cancer isn't responding the way it should do but the best thing we can do is just that - go with the next best thing.

I found out again recently that another boy from the hospital had died. I went away with him to the TCT weekend a few months ago. I'm ashamed to say it, but i didn't know him too well and i hate the fact that i never took the time to get to know him better.

I've also heard that two of my friends have fallen out over a boy and are now worst enemies or something. It makes you think though and like i've said before, life is too short to bear grudges. I hate people that fall out and argue over the most pettiest of things - they have no idea. I just don't see the point of wasting your energy on hating someone when there are so many other things to love in the world. It's time people really started to focus on the positive things in life instead of always looking at the negative.
People moan about their love lives, exams, stress, work when really these things are so petty. If you just stop and think about your life, and i mean really think, you will realise that those things don't really matter at all. Yes life is unfair, but it's also too short.

I'm having the crappest time lately, not life wise just health wise. I don't really care about that though. If you think about it there is always someone out there who is worse off than you and that's what i really concentrate on. I may not be leading the perfect life i'd like to, but knowing there is someone worse off than me gives me a reason to keep going. I have a home, i have food on the table and i have my happiness. That's more than what nearly 80% of the population have and that's a fact.

Now can you see why i'm so happy?

Cancer is like a Box of Chocolates

2007-07-07T23:22:00.000+01:00

Ever had that feeling of being exhausted even after a good night's sleep?

It seems to be happening to me a lot recently.
I just don't have any energy anymore.
Things i used to find easy are becoming ever so slightly harder.
I wake up in the morning and by lunchtime it feels like i never went to bed, like i missed a night's sleep. My energy is zapped.

I'm still going on with this strong chemotherapy. Had my second lot of it on thursday. I've been really ill with it again, hence why i'm updating this blog on a weekend, i didn't have the energy to do anything again. I have to sit down and rest nearly every ten or fifteen minutes and i can't seem to stand up for to long anymore.

Cancer really is like a box of chocolates. That's how i see it.
You have the chocolates you like and the chocolates you hate.
On a good day it feels like you've picked a good chocolate and on a bad day, a bad chocolate.
The only thing is the chocolates are disguised in colourful wrappers, wrappers that represent life, represent that day that has started. You don't know if it's a bad chocolate or a good chocolate until you unwrap it.

Lately i seem to be picking a lot of bad chocolates, bad days.
Hmmm i never really liked chocolate anyway....

.....Jelly beans anyone? :)

Looking back....

2007-06-29T11:14:00.000+01:00

It's amazing how quickly three years fly by when you are stuck in the world of cancer.
The days and weeks seem to go so quickly and they then turn into months, which then become years.

The years that have passed since me being diagnosed have brought on some of the worst memories i can think of, but yet have also produced some of the best times and memories of my life.

We were clearing out the loft a few days ago and i came across all my "get well" cards and presents. Looking through them i noticed the names of the people, people who i hadn't seen for ages. I remember watching and seeing people drift away around me. Whether it was college or jobs, people were moving on with their lives and i hated the fact that i never got to say my farewells to the majority of these people.
I would love to know what had ever happened to some of the people i went to school with and what they are now doing at this very second, yet i know i can't really do that.

I'm lucky in other respects though. I have friends now that i would never have met if i hadn't got cancer. It's weird when you look back and wonder what if? What if i hadn't got cancer? Where would i be now?

Frankly i wouldn't want to know. I'm happy with the person i am now. I have a supportive family and some of the most amazing friends anyone could ever ask for and i know they are there for me whenever i need them. I think about the world differently now and stay positive and happy no matter what. Having cancer has really opened my eyes, opened them to give a much wider perspective of the world. I take each day as it comes and live it to the fullest, knowing very well that every single day could be my last. I'm much tougher now than i ever was, not the toughness that's seen in fighting and bullying, but the toughness to perservere. I know now that when i get knocked down, i can get back up again. Yes i may be weaker and a bit more bruised than before, but there is no way cancer is going to keep me knocked down.

I'm going to fight; and i'm going to fight HARD

First Day......Of HELL

2007-06-21T20:02:00.000+01:00

Hmmm, i can write a few words to express how today was,

Stressful, Hell, Sad, Lonely, Annoying..... i could go on.

Yes, today was the first day of my new chemotherapy - ABVD.
I thought things might have gone according to plan.
The doctor told me i'd only be in there for four hours....

.....Eight hours altogether, funny four hours that turned out to be.

Everything was going fine. I'd had the three lots of new chemotherapy and was being administered my final chemotherapy drug, which was supposed to be over half an hour.

The senior nurse put it up fine and told one of the other nurses to keep an eye on it.
I was feeling fine and quite suprised that i wasn't feeling the slightest bit sick.
That was until the senior nurse came back from her lunch break.

Turns out the chemotherapy hadn't gone through and i'd been sitting there for an hour with nothing going into me.
My cannula had now clotted and i had to have it removed.

What followed was a painstaking half an hour of cannula jabs here and there as the stupid woman tried to put a new one in.
I swear she hit a raw nerve with me. I ended up in tears. It was just that stressful and annoying, i wanted to be anywhere but there.

In the end i finally got another cannula in and the chemotherapy got completed, a total of four hours after it was supposed to.
I can't explain the sheer boredom of sitting in a bed, being strapped to a rickety old dripstand, doing nothing. I wouldn't wish it on anyone.

All i'm hoping is it's not like this the next time i go. I've been ill, been sick and i don't know how long it's going to go on for.
I'm just glad i've got a week to recover. Not due back until another fortnight. I think i'll need that long to get over this lot.

Roll on next week eh?

The Girl With Cancer

2007-06-14T14:37:00.000+01:00

Ahhh what a rubbish day it's been.

Crappy weather, crappy hospital and i'm feeling pretty crappy myself.

Had my hair shaved today.
I knew it would eventually happen and i knew what to expect, didn't stop me feeling completely awful.
Sitting in the salon chair is normally something us girls love, well not this time.
I watched as my hair fell off and landed around me. I can't explain it but at that one moment something changed again for me.

I'm no longer Amy.
I'm Amy - the girl with cancer.

When i still had my hair it was easier. Noone knew i was fighting cancer unless i chose to tell them myself. Now, looking at my hat covering my head, everyone will know i've got cancer. I can't hide it anymore. It's made everything seem more real and i'm all the more determined to fight it! And i guess every cloud does have a silver lining - i save a fortune on shampoo :)

Got into the hospital this morning expecting my mild chemotherapy before i started my new ABVD treatment next week.
As always though things didn't seem to go that way.
My doctor was away (again) and it seemed that the other doctor we had to see had written me up for ABVD this week. He also sent me for a heart scan that also wasn't planned.
To be honest, i didn't need it. I thought we'd just come in for routine treatment, then we get loaded with everything else. More stress that wasn't really needed and for the first time ever i got really pissed off.

The doctor's eventually sorted it and i got given my normal chemotherapy - ABVD starts next week as planned.
I was so glad to get home today. I've got a nice day to rest tomorrow and then it's off to London for the weekend.....frankly i can't wait :)

P.S I've been getting people asking me about getting a regular update of my blog. If you scroll to the bottom of this blog you will see something that says "Subscribe to: Posts (Atom)" You can subscribe to the blog that way and you will get the updates sent to the computer under your favourites. If you aren't computer literate i can also send an update to your email address and it's all easier for you, just let me know :)
Hope that helps!

Bring It On!

2007-06-11T22:38:00.000+01:00

I told you i'd update with the doctor's phone call, so here i am :)

He had the meeting today and phoned to confirm the ABVD treatment is definately going ahead.

After weeks of waiting and not knowing, something is finally going ahead.

As to whether it will work?
That's another thing we will have to wait for.
Let's just hope the old saying is true,

"Good things come to those who wait"

Why do all good things come to an end?

2007-06-07T13:15:00.000+01:00

How time flies eh?
I can't believe we have entered June already. Only seems like yesterday when i heard my cancer had returned and yet that was four months ago.

What can i say about today?
Still didn't get any news that was definate and it seems that now in reality, i don't think anything is definate when it comes to this type of thing.

Finally saw my actual consultant this week and he informed us that the major meeting with all the doctors and nurses, that was supposed to be on monday, didn't happen.
This once again means that nothing definate has been planned.
The meeting is rescheduled for this monday and the doctor will phone me and let me know the outcome.

The most likely action now is ABVD the treatment i spoke about in a previous post. The doctor has wrote me in to start recieving it in two weeks time, whether it will go ahead or not i won't know until Monday.

Radiotherapy has come back a no-no. The radiographer is reluctant in giving me any treatment at the moment as he is anxious of the outcome. I had a funny feeling this wouldn't go ahead anyway.

The ABVD treatment takes 6 hours and i am hooked up to a drip and given the drugs intraveniously. I suppose the upside is that i won't be staying in hospital for days on end.

It's still waiting around now really. At least we near enough know that the ABVD is definately going ahead, just got to wait until monday for definate.
I will update here then and let everyone know.

As for the good things coming to an end?
I've just had the greatest time ever in London and it seems as always it ended too soon. Everything was perfect and i hate that feeling of returning home from something that awesome - it feels like you were never away. Kind of like a world away from what i'm used to.

Shame though really, as in some ways my cancer has been a good thing. I can't really explain it but it has changed me for the better.
Ironic though that if this cancer's been a good thing, why hasn't it come to an end yet?

Laugh Out Loud - Though it's not really funny!

2007-05-31T13:11:00.000+01:00

Once again back in clinic this week for a shot of my regular chemotherapy drug Vinblastine.

Apparently one of the doctors has decided to increase the rate of it so i will be even more exhausted than i usually am - great!

No real news this week as my doctor has gone on holiday for a week, the lucky git!
So i'm left here waiting once again and won't find out anything 'til next week.

I had to get checked over by another doctor however as i have had a cough and cold for the past week. She says i've most likely got a chest infection so i've got to take cough medicine, YUCK! Lol!

Someone said to me today,
"Amy, how come you are always smiling when like the worst thing is happening to you?"

And i just laughed. I told her that if i didn't laugh, i would cry you know? I don't see the point of moping around feeling all sorry for yourself when you can't really change anything by doing that. You've just got to go ahead and fight it, oo and keep smiling :)

Catched up with the legend of a macmillan nurse Claire and had a laugh and joke with her. She's brilliant!

Apart from that nothing really happened i feel kind of lousy today actually, i think it's just the cold and everything.....oooh and the fact that my guinea pig died today.
Bless his little heart, the poor thing.

Oooo and my flippin' hair has started to come out. The doctor near enough promised that the chemo i'm on wouldn't make it come out,but obviously it has.
It's coming out quite a lot but i'm doing well at covering it with my remaining hair at the moment - if it comes out anymore i might just have it shaved off again, lol. BALDIE! BALDIE! Haha! So if you have any spare hats lying around you know where to send them!

I am hoping i will finally hear some news next week and that the doctors have come to a decision, i will update here as soon as i have any.

Until then, keep smiling people. It could brighten someone's day :)

So Much For My Happy Ending

2007-05-24T12:26:00.001+01:00

Wow, where to start this week. Everything seems to have come at once and i've got lots of new information.

I wasn't due in clinic today for treatment but i had to go and see my doctor anyway so ended up booking in.
Earlier this morning i was sent for a chest x-ray to see how all the treatment is going and if it's done anything to the tumour....

Had it? ......Not exactly

The doctor explained that the chemotherapy i was taking had stopped the tumour from growing any bigger but hadn't made it any smaller.

He then gave my brain an overdose of information as he went into the different things he has planned for me next....

1. Fortnighty Vinblastine
This has been given the go-ahead at the moment and i'm starting with it again next week, same old same old i guess. Not as bad though if it means only fortnighty trips to the hospital

2. Radiotherapy
This is another option the doctor was looking at, but he has yet to hear back from the radiographer. Frankly i don't think this will go ahead, they had to stop it last time.

3. ABVD
This is the most complex one of them all. It consists of four strong chemotherapy drugs that i will have fortnighty in the clinic. They have to be given over a period of 5 hours so i will be a day case patient. Not many side effects to these apart from the worst one i guess....hair loss. Which once again means that if this goes ahead i will lose my messy mop of red hair for about the fourth time, gutted!
The doctor is not sure about this option yet either and is waiting to hear from his colleagues around the world. Even the most skilled cancer doctors are baffled with my case, like i've said before "I'm worldwide famous, but for all the wrong reasons"
I'm there special case - which probably means feed her any drugs as we don't know how it works.

So those are my three options - i have to go back in a few weeks to see if the doctor has heard anything about where to go next...joys!

Stuck once again in another rut, i just wish they'd get on and decide what to do with me next. It's the constant waiting and not knowing that is the worst.

Anyway will update again next week :)
Thanks for reading!

If One Door Closes Does Another Open?

2007-05-17T13:13:00.000+01:00

Went into clinic this week as usual for another dose of Vinblastine.

Finally managed to see my doctor and he had heard back from the surgeon - the surgery is out of the window.

Typical.....

The surgeon explained he didn't want to attempt any surgery as it would probably do more harm than good, which i suppose is a good enough reason.

Doesn't really help me though....i'm stuck in another rut again.....don't know what is going to happen next.

I've got to go back next week, not for chemotherapy, but for a chest x-ray.
This is to see if the vinblastine has been working and the outcome of it will help doctors decide what to do next.
If the tumour has responded to it then i will most likely continue with the vinblastine, but if it hasn't? The doctor doesn't know yet. I don't think they have any clue to be honest, stupid rare tumour hehe!

Aside from that nothing else was really mentioned, apart from the fact he is still waiting for a reply from a radiotherapy doctor to see if there is any chance of that.

Kind of a let down once again. Don't really know if it's bad or good news that the surgery can't go ahead. It's good in the fact that they are not risking my life attempting it and also bad as they don't have any other options at the moment.

Just have to wait and see really. Wow i seem to use that word so often when it comes to talking about my treatment......waiting

I've just had the best two days ever as well!
Me and my mom had our trip to London and it was amazing, just as i hoped it would be.

It was great to just get away from everything, have a proper rest (though we hardly got any rest at all!)

Again went to see a musical and this time however we day ticketed for it. This is when the box office releases 24 front row tickets every day for a discounted price.

Only problem?
You have to queue for ages in order to get them. The box office opened at 10.....we were queueing from quarter to 6 (and yes this is in the morning lol!)

Four hours in the dull weather, sore legs from the walking and a cold to match, but was it worth it?

You BETCHA!

We sat front row dead centre and it was the best thing ever.
The actors were amazing and their voices were mindblowing.
Saw everything in so much detail...it was seriously breathtaking.
Never had an experience like it before and probably never will again. Was amazing! 16/05/07 A Day To Remember :)

Everything is so expensive in London though, it makes me wonder how people manage to set up home there....i can see why you have to have a really good job! It cost me a fortune just to get there and sleep over for one night!

Shame we had to come back, seems like we were never away.
Kind of like a snap back to reality, back to the real world again.

Ahh well life goes on eh?

Will update again next week, once i get the results of the scan

Same Old Story?

2007-05-10T19:26:00.000+01:00

Wow, what a weird week it's been.

Ever had one of those days where everything seems to go wrong?
Well i certainly had one of those today.

Got into the clinic this morning to be greeted with tonnes of people...all waiting to be seen by a doctor and recieve treatment.
I've never seen so many people there on a thursday for absolutely ages.

We ended up seeing a different doctor today who didn't seem to know about much that was going on with my treatment. She had no idea if the surgeon had got back to us and didn't seem like she knew an awful lot about it....kind of disappointed i didn't see my usual doctor.

My blood count was fine so i was given the go ahead with the vinblastine.
After what seemed like forever, we finally went in to have it.
Took the doctor four attempts to get a cannula in my veins....very annoying, not to mention painful.
I had the chemotherapy eventually and could finally go home.

Ooo and then we missed the train....just my luck.

Overall a kind of sucky day today. Nothing seemed to go right and we still don't have any more news on the surgeon. Have got to return next week for another lot of vinblastine so hopefully the other doctor will be back.

On a more exciting note....

I am off to London in a few days for a little break with my mom.

It's going to be great and i'm super excited! Just a chance to get away from everything...even if it is just two days :)

I'm praying for good weather though, it doesn't seem to be that nice at the moment.

I know we're going to have great fun, lots of laughs and brilliant shows to look forward too.
Also heard a few new riffs in a couple of songs i love so i'm praying for them tooo, haha :D

Will update next week and let you know how i get on with the doctor, fingers crossed he will have some news!

Ooo and check this video out if you have time....
It was when me and some of my friends from the ward went to a conference called Find Your Sense Of Tumour (FYSOT)
It's where teenagers with cancer come together from all over the U.K and abroad to share experiences and just party, party, party :P
We always have an amazing time there and i always come away with fond memories, great new friendships and knowing more about my cancer and how it affects me and other people :)

And Because I Knew You......

2007-05-04T10:40:00.000+01:00

Once again i find myself hearing those dreaded words as i ask a nurse how one of my friends from the ward is doing...

"Amy, i'm afraid they are no longer here."

I think to myself, why them?
What did they do wrong.

Then i realise i have to carry on fighting as i know they would have wanted me to.

See it seems to be a common occurence now....

When i first ever started treatment on the ward i got put on a bay with other teenagers my age. I met some lovely people there and we became close friends. We sort of made a silent pact to keep on fighting and try and beat this whatever happens.

Of the seven people i knew at that time, only two remain today......Megan and me.

Can you imagine what that feels like?
Making great friendships and then wondering how long they will last.
I'd certainly give my life anyday if it means that any one of these people could come back, they didn't deserve to miss out on the rest of their lives.

Michael, i know you have gone to a better place and God is taking great care of you up there so you don't have to worry - RIP buddy.

Yet through all this sadness and loss of another friend i find myself still smiling, knowing that they would have wanted me to stay strong.

Not only am i fighting this battle for me now, but for all my team mates i have lost on the way - and there is no way i am giving up easily.

On a less sad note, i went again for another dose of Vinblastine yesterday.

Spoke with the doctor and he told me that the scans and pictures have been all posted off to the surgeon at Heartlands hospital, just got to wait and see what he decides.

I find this sort of waiting unbelievably difficult.

Knowing my future is in the hands of a complete stranger....

I still find myself stuck, not being able to plan anything that far into the future as i have no idea when any of my treatment is going to happen.

Yet i still plan things in the hope that i can go - probably only to be let down again.

A postive note though...

Me and my mom are off to London for a few days - just to escape everything that's going on at the moment...proper chill time.

This is something that is definately going ahead, we have planned the chemotherapy round it this time.

Gives me something to look forward to

I've got to have the weekly Vinblastine for another 3 or maybe 4 weeks and then another scan to see if it's done any damage to the tumour - fingers crossed!

Will update again as soon as i find out any information about the surgery or if anything interesting happens inbetween.

Until then...

“The happiest of people don't necessarily have the best of everything; they just make the most of everything that comes along their way.”

Major Life-Threatening Surgery? Too much to take in!

2007-04-28T21:41:00.000+01:00

So yeah, went on thursday for my fourth lot of Vinblastine.

I was taken into the consultant room to speak with my doctor and was yet again introduced to more student doctors. I know they mean well and are only trying to learn but it's annoying when you are about to hear the results of tests and want to ask the consultant personal things......rant over :P

Anyway, the week before i was sent for a routine chest x-ray to see how my tumour was reacting to my new doses of vinblastine and the results were not bad, but not amazingly good either.

It showed that the tumour hadn't shrunk at all but at least the good thing is it hasn't grown anymore. This means that the chemotherapy i'm having is stopping the tumour from growing but isn't killing the cancer cells off.....not really any change from last time.

One extra thing.....

When i first ever got diagnosed the doctors explained how difficult surgery would be as the tumour is attached to my main artery and also my heart - basically saying it was a no-no.

Now however it seems they have changed their minds.
My consultant is now sending my scans and x-rays over to a specialist surgeon at the local adult hospital to see if he would attempt to take it out.

He didn't want to say much apart from the fact that it would be major surgery as it's so close to everything keeping me alive. They wouldn't be able to take the whole thing out but they want to try and take as much as possible. They then want to try and start me on another course of radiotherapy in the hope it will kill the cancer cells left.

One setback?
We have to now wait and see if the surgeon is willing to take on such a big operation.

I've got a funny feeling my consultant was holding back on a few things. My surgery would take numerous hours and the slightest slip up could be fatal.

Kind of scary really

So yeah, for the minute, we are waiting on the surgeons decision, could take a few weeks.

For the time being i am still taking weekly Vinblastine treatments in the hope it will keep the tumour at bay for now.

Will update this as soon as i find out any more news.

The doctor didn't explain whether there were any other options apart from this surgery....i sure hope so, at least then we will have something to fall back on.

I don't know whether i want this surgery to go ahead, but then again i think it's the only way forward.

It's either risk my life in that operation or not risk my life and end up loosing it anyway if nothing else works.

I think this is where the real fight is going to begin....

From Diagnosis To Where I Am Today

2007-04-27T10:46:00.000+01:00

Hey and welcome!

Thought i'd start way back in the beginning and tell you about all the chemotherapy, radiotherapy and various other treatments i've had up to now.

I was first diagnosed way back in May 2004 after a month of constant tests, scans and a biopsy operation.

The tumour is a type of Non-Hodgkins Lymphoma though the proper name for my exact type is Anoplastic Large Cell Lymphoma. It's a very rare type of Lymphoma and there isn't a set type of treatment for it, i was sort of like a guinea pig where the doctor's decided to give me whatever they thought would work.

I started off with a six month stay in hospital where i was given a course of mild chemotherapy. I can't remember all of the drugs i had but Methotrexate sticks out at me for some reason. After the initial six months of chemotherapy i was sent for a scan to see if the tumour had shrunk or even disappeared, it hadn't. The tumour hadn't changed in size at all and the doctor's explained that it was very unusual to not see any change at this point.

They then suggested a more higher course of chemotherapy. I had another three months of chemotherapy drugs that seemed as though they were working. I became very ill from the drugs and had to stay in hospital for a further two months. The muscles in my legs wasted away and i was isolated away from the rest of the ward. Noone, not even the doctors, could explain what infection i had taken on. Sure enough i came back fighting and on christmas day 2004 i managed to get out of the hospital and back home. It was only one night but wow i had waited so long for it, i don't think i've ever wanted to go home so much in my life.

Further tests showed that the tumour still hadn't shrunk to what the doctor's wanted. They explained that the tumour was near enough inoperable, as part of the tumour was attached to my heart and the other to my aorta (the biggest artery in the human body)
They did a few biopsies in between treatments to try and take away as much of the tumour as possible, but they could never remove it all.

In February 2005 the doctor's suggested another plan of action - Radiotherapy. I was given a course of 23 lots, but only got as far as 13. The consultant radiographer told me that if they carried on it would damage my lung and i would end up a respiratory cripple.

Another plan of action washed down the drain.

By now, doctors were running out of ideas. My consultant was in contact with doctors all over the world, trying to find the best treatment for me.
He suggested a new drug that had been linked with my type of cancer - Vinblastine

I was told it was a mild chemotherapy drug and had hardly any side effects, meaning my hair would finally grow back.
I went on to have this drug for a further year and following this i had another biopsy operation.

Finally got the good news that the part of the tumour they did remove was dead, which most likely meant the tumour that was left in me was dead aswell.
The doctor said i should carry on with the vinblastine for a few more months just incase there are any cancer cells still present.

In November 2006 i was finally put into remission. This is a period of 5 years where you are monitored closely as the cancer is most likely to come back during these crucial years.

My follow up scans in the following months showed no change and the tumour that was left seemed to be well and truely dead - in other words, scarring tissue.

That was until last month...

I started to develop a cough that wouldn't go away, i had it for four weeks and the doctor sent me for a scan only to have my worst image relived.....the cancer was back

After only three months of remission i was being told i'd have to relive my journey all over again and treatment should start straight away as to stop the tumour growing any bigger.

So here this blog ends and the next one begins. I will keep this up to date with any new changes, treatments or ideas that the doctor's come up with next.

My future is up in the air at the moment, noone seems certain of what it holds for me.

All i know for sure is i will keep on fighting this, no matter what happens