New York, New Hair, New Home

Tuesday 24th July 2007 10:44pm

You may notice the date of this entry, and the date I've posted it, doesn't match.
You may also notice that there are several blog entries, with different dates, in this one entry.
There's good reason for this, which will become evident shortly!

The dates of these few posts don't go in the 'usual' blog order. That is, the latest is at the bottom, rather than the top.
I'm not trying to confuse anyone (honestly!). It's just that this is how I've written them.. in classic diary style really, rather than in blog style.

Firstly, I know I haven't written anything here, for ages. And I want to apologise to those who've sent messages, asking if I'm ok, and saying they're worried about me, because I've been away from my blog for so long.
Thank you so much for caring about me :o)

I'm fine at the minute, and pretty happy.
I have had some random side and back pains lately, which I'm going to be having scans for, over the next couple of weeks. So if anyone would like to keep their fingers crossed for me, that the cancer's still 'stable', and isn't doing anything, I'd be extremely grateful.

So, what have I been doing then?
Well, I've been a bit of a busy bee..

Earlier this month, I flew off to New York City (Midtown Manhattan), for 10 days, with my auntie.
The weather was absolutely boiling hot, and humid. I got very sore feet (too much walking on the first day, and me not considering how it could affect my feet (which have always been sensitive, but even more so since two lots of chemo). But we still had a great time!

We shopped alot.. Looked over NYC on the 'Top of the Rock (at the top of the Rockerfeller Centre)..
Did a 'Sex & the City tour, which I loved. I'm a huge fan of the show! We got to sit on Carries apartment stoop, eat cupcakes from Magnolia Bakery, drink Cosmopolitans at 'Scout' (O'Neils, in real life); the bar owned by Steve and Aiden, Visit 'The Pleasure Chest', where the girls shopped for their rabbits.. and see many more locations featured on the show!
We went up the Empire State Building..
Flew to Buffallo, then went to the Canadian side of Niagara Falls, where we sailed up to the falls, in the 'Maid of the Mist' boat..
Went on the Statton Island Ferry, where we waved to Lady Liberty..
Did a couple of bus trips/loops, and popped over to Brooklyn..
Shopped in Bloomingdales, Macys, Bed Bath & Beyond, 'did' 5th Avenue, and went to a huge Sunday street market..
Visited Times Square more times than I can remember.. our hotel (which was lovely!) was only a couple of blocks away.

It was far to hot, in NYC, to be wearing any sort of head-covering, on my now 'baby fuzz' covered head. So I went without.
I had a couple of comments, from the couple of people who had to check my passport, at various times during the trip.
They weren't horrible comments. Just "Oh my, what happened to your hair?!" comments.

Since I've been home, I haven't covered my head with scarves or wigs, either.
I've already gone through the trauma of going 'topless' for the first time, once.. I don't want to have to do it again.
So I wear my baby fuzz with pride. This is me. If you don't like it.. well, quite frankly, I don't care!


We arrived home on Wednesday 18th July.
On Friday 20th, I moved out of my parents house, and into my fabulous, brand new flat!
My lovely brand new flat, which has no internet yet. Hence I'm sitting here now, writing this on my laptop. But will only be able to put it on my blog when I visit my parents again, and borrow their internet.

I started looking for a flat to rent, a couple of months ago.
I found a beautiful little flat, right by the canal. Deposit was paid. Then it rained.. alot.
The flat (and all the places around it) flooded, and became unlivable. So that was that.
Shortly after that, I found another (first floor) flat, with the same letting agents. It's brand new, just been built, never been lived in before.

I'm sitting here, looking out of my fabulous new living room window, over the little park, and at the moon in front of me.

Moving out of my parents house, and into my own place, is something that, a few months ago, I thought I'd never be able to do. So, although getting your own place is always exciting, imagine how good it feels to do it, when you doubted you'd live long enough to be able to do it!

Although all the cancer stuff is constantly on my mind, I'm so happy just now. And these days, I revel in every little bit of happiness that comes my way. Because I never know when it's all going to change.
I hope the scans I'm having over the next week or so, allow me to stay this happy for a while yet.

And the herceptin that my oncologist had decided to stop, has been started again.
I've changed oncologists and hospitals, after losing faith in my previous oncologist, after what seemed to be developing into a catalog of errors.




Wednesday 25th July 2007. 2:07pm

I'm sitting here again, in my fabulous new flat, looking out of my fabulous new window, having just been for a bone scan.
After the bone scan, I had to have two x-rays. One of my shoulder (where hot spots showed up on my last bone scan, about 7 or 8 months ago. But it was decided it was 'nothing to worry about', 7 or 8 months ago. So we'll see what they say this time). And one of my pelvis.
I've been having pain in my pelvic area for a while now, which is why the bone scan was ordered in the first place.

I'm hoping they've x-rayed my pelvis, because of me telling them I was having pain. Rather than being x-rayed because they saw something on the bone scan.
Since this pain started, I've thought it was probably (hopefully) a trapped nerve. It feels like a trapped nerve to me. But what do I know really!
I've always thought bone pain would be a more dull, consistent, achy pain. Rather than the shooting pain I'm getting when I walk, with this. But again, what do I know!

As for my shoulder.. I haven't mentioned any pain to them, regarding my shoulder, because I haven't had any pain. So I can only assume the bone scan showed something up again.
I wont know the results of the bone scan, x-rays, or the liver scan I'm due to have next week, until I see my oncologist, in three weeks time.
What will I do until then?
Most likely turn it over and over in my head.. worry myself sick, cry, convince myself the cancer's now in my bones too, then pull myself together, after repeatedly telling myself it could be nothing, and telling myself if it is something, then I'll have to deal with it. Then the cycle will start all over again. And I'll keep cycling through a whole host of emotions, that I never even realised I could experience, before the cancer came about.. for three weeks.

So now, I'm sitting here, in my fabulous flat, looking out of my fabulous window, all alone, desperately wanting to be able to talk to my online 'pink ladies', through what I now fondly call my 'pink forum'. Because I know they'd understand just how I feel.
They wouldn't tell me it'll be ok, and not to worry. They'd give me a big cyber hug, and hold my hand across the ether, until I get the results.. and always.
But I have no internet.

Oh, and James and I are 'together' again.. for the past couple of months, or so. So we'll just have to see how things go.

Happy End of Chemo!

Well, here we are again!

Since my last blog entry, I'd started to pick myself up a bit, and even begun to 'look forward'.
I'd paid a visit to my GP, to say "Look, I think could do with a bit of help here. I'd like some counselling."
She agreed, and told me there's a waiting list of two to three months. Oh good!

Yesterday, I saw 'the ex', and all the feelings I was trying to hide in the little pocket of my life, where I try not to look, were dragged to the surface again.
So last night, I felt awful again. Like I was back to square one.
I've managed to shake it off a bit today, and don't feel as bad. But I still don't feel great about it all.

A couple of weeks ago, he did me the honour of telling me why he'd "fallen out of love" with me (I had asked him why). And it pretty much boiled down to the fact that he was bored.
Bored of me being boring.
While I haven't been well enough to do much, through chemo, he was bored of staying in with me.
I can't blame him really. I was bored of myself.. Barely capable of dragging myself out of bed every day, never mind keeping anyone else entertained.

I had my last (for now) chemo and herceptin treatment, last Wednesday. That's it now.
It's the first time in almost two years, that I'm having no treatment.
Herceptin wasn't working, so it's been stopped. And just being left to go it alone, is a little bit scary.
I'll be having another liver scan next week, to see what's happening in there now, at the end of chemo.

My liver function tests still aren't 'normal', but they're a hell of alot closer to normal than they were a few months ago.
We're now adopting a "watch and wait" approach.
I'll have blood tests every four weeks, to check my liver function. If the score starts going up again, I'll be scanned to see if the tumours are growing again.

If the tumours start growing again, the only option available to me at the minute, is more chemo.
If the tumours start growing again soon, I really don't know if I could face more chemo. I suppose I'll jump off that bridge when I get to it.

After a monumental cock-up by my oncologist, last week (he wanted to start me on a whole new course of chemo, when I didn't actually need it. He hadn't read my notes properly. This could have had serious health consequences for me), I'm waiting to be referred to a different oncologist, at a specialist cancer hospital.
I have no faith in my oncologist anymore, and I really need to be able to have faith in the person who's supposed to be trying to save my life.

Also since my last blog entry (and on the day my oncologist made his cock-up, incidentally), I've had a 31st birthday.
It passed by relatively quietly.. with some birthday cake and a drop or two of champagne, with my family.

So, I've managed a 30th birthday and a 31st birthday. Both of which I doubted I'd ever see, when I was first diagnosed with cancer, almost two years ago.
I hear people complaining, at every birthday, that they're getting older. I want to shake them, and tell them to be grateful they are getting older!

For my birthday, I've had a set of chrome roll hoops on my car..
















I've also had a Native American drone flute (it arrived today!), which sounds beautiful. Even the cat seems to like it.

The day after my birthday, I had chemo!

So now, I'm still feeling a bit grotty from chemo, and have some big painful ulcers in my mouth.
The grottiness should wear off soon, and I'm desperately hoping I'll be able to start looking forward again.

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.