Existing

I've realised, that I'm not living. I'm existing.

Going from one day to the next, doing nothing with my life, because I don't know what to do, or don't feel well enough to do it.

My emotions hit the floor a couple of weeks ago. And much as I try to pretend that everything's ok now, I feel lost and empty.
For the first time since I was diagnosd with secondaries (and for a while before that too), I'm all alone with it. Alone with my thoughts. And alone with.. well, everything really.
I feel lost. I don't know where to go. My direction and motivation has gone.

I miss having someone to do things with, and go places.
I miss the cuddles, the intimacy, having someone to cry with, and someone to laugh with. Someone to just 'be' with.

I'll be having my last chemo (for now) in a couple of weeks.
Then what? What exactly am I fighting to live for now?
It was all fairly clear before. I knew why I wanted to live. I knew why I didn't want this cancer to get me. But now, there just doesn't seem to be anything.

Angels & Bolters

I've just come across this article, via a comment in Minervas Blog.
'Angels and Bolters' talks about how some people cope with cancer, and how some people don't.
The article is talking about friends and family, rather than the 'cancer patient' themselves.

Shortly before reading this article, I discovered that, when I was first diagnosed with breast cancer in 2005, a friend of mine made it his mission to find out all he could about the disease. In his words, he read about it until his head was spinning with information.
Yet the person I was supposed to be closest to, didn't seem to want to know anything about it. And preferred to pretend everything was ok and 'normal'.


The Preachers and the Clueless..

"Preachers are anxious to give you advice and information."

"The clueless make inane comments. There are an infinite variety of idiotic remarks."

I had someone telling me yesterday, that "positivity cures all".
Seriously, if that's what you really think, you're sadly deluded.
For the most part, I've stayed positive. It didn't stop the cancer coming back, did it? It certainly didn't cure it.
I know of people with incredibly positive attitudes, who have lost their life to this disease. Their positivity didn't cure them either!
I also know of people who have had an extremely negative view of the disease they've had, and come through it with flying colours!

So please, I know people who say these kind of things are only trying to help, but please don't tell me that positivity cures all. It doesn't. And by saying this, you're implying that it's my fault the cancer came back, because I wasn't 'positive' enough in the first place.


Bolters

"They stay away because they are afraid of their own sadness or their own mortality."

I think we all know a few of those, don't we?

They run away, because they don't know how to cope with what's going on.
What makes you think I know how to cope with what's going on? It's all new to me too, you know!


Angels

"Angels know what to do, and they know what you need. They treat you like the person you always were. They know that despite the cancer you are still you."

And thank god for my angels!
I've realised they can be found in the most unexpected of places.


Fellow Travellers

"For fellow travelers, your cancer journey is their journey."

My family and REAL friends are fellow travellers.
My dad, who comes along to every hospital appointment with me, always drives me there, and always hangs around for hours while I'm having chemo, to take me home again.

And of course, other people on their own breast cancer journey. I class them as fellow travellers too.
We share the map that helps to get us where we want to go. And give each other pointers, on the way.

"This Relationship Has Run Its Course"

I'm on a bit of a downer today. Well, for the past couple of days.

James and me split up on Thursday, after being together for a year. I think he was bored of 'cancer girl'.
I'm not enough fun when I'm feeling ill. And he doesn't seem to understand why I'm not happy and cheery all the time.
After alot of other things had been said, he came out with the good old "This relationship has run it's course for me."
But I'm not stupid. I'm fairly sure it wouldn't have 'run its course', if it hadn't been for the cancer coming back.
I knew things weren't quite right with us, but I'd hoped he would talk to me about what was bothering him, rather than just giving up and ending it.
So, cancer wins again.

The weekend before, saw the one year mark for us.
I booked a hotel for the night, and booked a meal for us.
I thought we'd had a nice weekend, but it seems I was wrong.

I've shed more tears over this, than I did when I found out the cancer had come back.
It appears to be upsetting me more than finding out I had a terminal illness.
He meant more to me than anything. He was my 'happy' amidst all the crap. Now my 'happy's upped and left.

I envy him. At least he can walk away from cancer world.

Grotty

I'm feeling a bit pathetic, and sorry for myself today.

I feel grotty and achey again.
I say again, but I feel achey permanently now. I feel like my bones, joints, and muscles belong an old woman, rather than a 30 year old, who felt great just a few months ago.
I just seem to shuffle everywhere now. And whenever I do walk anywhere.. even if it's only a short walk, my feet get sore.
I'm now sporting a very sore and swollen little toe, from making the very short walk into town, from the hotel we were staying in at the weekend. I even had my very comfy 'sneakers' on.

But grotty. It's difficult to describe this grotty feeling.
I have hardly any energy. I have a cold again, for the second time in about four weeks. I've had a cough for the past four weeks too, which is refusing to leave.
It isn't a bad cough. It's just annoying. And I'd be lying if I said it wasn't worrying me a bit.
I also have constantly watery eyes, which makes everything blurry. Not ideal for driving, really!

I spent yesterday morning looking into 'green' funerals.
It turns out there a green burial ground quite local to us, which looks nice from the photos.
I was going to pop over there today, to have a look at it, but the grottiness and blurry eyes have decided I'm not to go anywhere today. So it'll have to be another day.

I know it sounds morbid, to be planning your own funeral. But it didn't feel morbid, while I was reading about it. It felt like I was taking some control.

And I know it might sound silly, to those who have no cause to be thinking about their own funeral, but I'd like to have some control over where I'm going to be 'laid to rest'. I'd like to know where I'm going to end up.

What I absolutely don't want, is a church funeral, a christian ceremony, and to be buried in a cemetery.
I'd like to be buried somewhere natural and beautiful, in the Derbyshire countryside, because that's where I love to be.

Tomorrow, I'll be having a MUGA heart scan, to check if my heart's still functioning well enough to keep having Herceptin.
I don't know why they're bothering, to be honest, as I only have another two doses of Herceptin to go, then they're stopping it.
I can't say I'm looking forward to it.
I have to have two injections for the scan. The muppets in the nuclear medicine department can never find a vein, and I always end up covered in bruises.
The man who was attempting to do it last time, even managed to completely miss the big vein in my foot (yep, we ran out of veins in my arm), and bent the needle.

I'm still covered in bruises from the last chemo, and I have chemo again next week. I really could do without more bruises!

A Shot to the Head

I had a dream last night..

I don't remember all of the dream, but the parts I do remember were very vivid. And it culminated in me being shot in the head.
Lovely!

The first thing I remember is being in a classroom, at some kind of lecture.
Everyone was sitting at desks, which had individual glass screens attached. These glass screens were instead of a big board at the front.
Writing and images were projected onto the glass screens, which we were taking notes from.
The bracket on my screen broke, and the person who fixed seemed a bit 'odd'.

At the end of the day, myself and a couple of other people seemed to be locked in this classroom. We couldn't get out, but other people could get in, it seemed.
It wasn't really a classroom at this point.. more of a lounge, with sofas and whatnot.

Strange things kept happening. I can't remember all of them, but I do remember someone bringing in a cheetah, which turned into a black tiger, and tried to 'get' us.
Then there was a gorilla.
These animals came out of a cupboard within the room we were in.
I think one of my uncles, who I haven't seen or spoken to for around twelve years (he's a bit of a dodgy sort, and my family disowned him), made an appearance too.

The general feeling about what was going on, was a bad feeling. Someone was out to get me.

Then I was at home..
Sitting in the lounge with my mum and my uncle (not the aforementioned uncle. This one's a nice uncle), when my uncle suddenly got up, put the hood on his hoodie up, and ran to the bathroom.
I knew there was something odd about this behaviour, so I got up to go over to my mum, and tell her there was something strange going on.
My uncle obviously saw me get up, and left the bathroom door open a bit, looking through it.

My auntie was in the kitchen, and I suspected she had something to do with all this oddness too. So my mum and me went to her.
We all sat down.. I was really upset, and I told her I knew something was going on, and I knew her and my uncle had something to do with it.
It transpired that my auntie and uncle were some kind of gangsters (incidentally, they aren't really.. they're lovely people!).

The next thing I knew, a big burly man walked around the edge of the door, pointing a gun at me.. It seemed I knew too much.

I had my left hand resting on the left side of my face. He put the gun on my hand, next to my temple.
I could actually feel the metal on my skin, and heard the trigger creak, as he went to pull it.
My auntie and my mum were sitting there, seemingly not at all surprised or bothered by the fact I was about to be shot.

I said "Tell James I love him." And the man pulled the trigger.
I felt it, but it didn't hurt. And I seemed to feel quite calm about it all.

Then I woke up, heart beating a bit faster than normal, and breathing a bit more heavily than normal.
I was genuinely surprised to still be alive.
I honestly thought I was a gonner.

Tonight, I Cried..

Not through sadness, but relief, I think.

I still can't get excited about the good news I had on Tuesday, but I think some kind of relief's starting to sink in.

Relief that I have the chance to spend a bit more time with the people I love.

The sheer terror at the thought of leaving the people I care about, has overwhelmed me. It still does.
But now, hopefully, I've been blessed with a little bit more time with them.

Clean Car & Red tape

Today, I woke up early, and got up at 8:30am..

After breakfast and a nice bath, I decided a bit of car cleaning was in order.
My poor little MGF was well overdue for some TLC.. she hasn't been cleaned in months, because I just haven't had the energy.
But today, she got a wash, dry, alloy wheels scrubbed, and plastic rear screen polished.
I'd have liked to have given her a bit of a wax too, but decided that was enough from one day.

Then I gave the inside of 'Project Barn' (see http://www.funkybanana.net and click on 'Funky Banana Property Developments', for more info on that one) another lick of paint.

Not bad for the day after chemo, really!
Although I suspect the steroids are keeping me going at this point.
I take them for three days, every chemo cycle.. starting the day before chemo, then the day of chemo, and the day after chemo.
Judging by how the first three chemos went, it'll be downhill from tomorrow, for about a week. Then getting better after that.
I then tend to get a decent few days/week, before it all starts again.

After my first two Taxotere cycles, I was blessed with infections, from having a collapsed immune system, and a white blood cell count of 0.
After Taxotere number 3, my onc was gracious enough to prescribe Neupogen injections, to boost my white blood cell count, and hopefully keep my immune system somewhere close to normal.
I have to give these injections to myself, starting on day four or five after chemo.
I have to have them every day, for seven days.
Injecting yourself isn't much fun really, but it's better than the infections, and it's certainly nowhere near as bad as having chemo!

My oncologist called this morning, wondering why no-one had told him I'd been talking about going to see the liver specialist, in London.
I said I didn't know why.. he said he was going to slap the registrar I saw on Tuesday, for not letting him know.

The registrar seemed to want to put me off the idea of seeing a liver specialist/having surgery, saying that it was a waste of money, and there's no evidence to support it giving any better outcome, than chemo alone.
Today, my oncologist said liver surgery in such cases, wasn't the 'usual' route.

Well, incase anyone hasn't gathered by now, I don't seem to be a 'usual' patient. Or even a 'usual' person.
Secondary breast cancer certainly isn't 'usual' in someone my age. It's pretty unusual.
And as for the wasting money.. well, my unwasted money isn't going to do me much good if I'm dead, is it!
I'd rather waste some and take a chance, than just not bother doing anything.

My oncologist also informed me, that to get hold of the liver scan films (that are needed by the liver specialist in London, before he can see me), I'll need to ask my GP to write to the radiology department of my hospital, to request them. Then I may well have to pay a fee for them.
What is it with all this red tape? I can't see why the oncologist couldn't have just requested them!

I often wonder if these medical people actually realise it's a real persons life they're dealing with.