Giving Thanks this Christmas..

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...

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....

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...

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!

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...

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...

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?

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...

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...

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...

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...

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....

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...

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

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!

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

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?

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!!

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....

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....

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....

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....

....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...

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...

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....

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...

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....

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

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....

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.....

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.