Six Months Ago Today...

I was having brain surgery!

I've just realised that it's 6 months ago today, I had my brain op.
My oncologist told me that the "damned lies and statistics" (ok, so he didn't say that) gave me 6-9 months to live.
I know the liver issues are more likely to do me in now, than the brain.. but who knows, really. I might get eaten by a giant mouse, next week!

Well, I've made 6, so far.
For a while, I really didn't think I would, but I have. And I'm not planning on going anywhere yet.. I have a new fish to look after, and holidays to plan!

Fishies & Harps

Right then, where are we?

Since I last blogged, I've bought a harp.. the musical variety.

I've wanted one forever, so I splurged my birthday cash (it was only a small, cheapy one, as far as harps go).
It's just lovely :) I've never attempted to play one before, so when I learned how to play Frere Jaques, I was a bit impressed with myself.
I was even more impressed with myself when I figured out part of Pachelbel's Canon (without music to follow). It's one of my favourite pieces of music, so now I'm on a bit of a mission to figure out the rest of it!

This is the harp. It's made from rosewood, and is very beautiful..




I've also got myself a fishy.. of the swimming variety, not the eating variety.
His name's Alfie, and he's a Betta. Also known as Siamese Fighting Fish. Also something else I've wanted for a while, but didn't want to lumber my dad with something else to look after (along with Dillon, my kitty) when I'm gone. I hate having to think that way, but that's how it is. But I've sourced alternative accomodation for him, should anything happen to me.

This is Alfie.. he's my bootiful blue boy..







I've been having some issues with the lymphodema in my left hand/arm (mainly my hand). My Macmillan nurse is coming to see me tomorrow, so I'm going to ask her to get me sent to the lymphodema clinic again, because I'm not convinced the sleeves and glove I've got (which I very rarely wear, because I don't usually need to) from a different lymphodema clinic, are even the right size!

Raise Funds for Weston Park Hospital Cancer Appeal

This is where I ask for your help, ladies and gents.. and it wont even cost you anything!

Weston Park Hospital is one of only three centres of excellence for cancer treatment, in the UK.
This is where I recieve my treatment, under the excellent care of their oncology team.

If you're a bit of an online shopper (like me!), you can help to raise funds for the Weston Park Hospital Cancer Appeal, just by registering through The website.. http://www.cancerappeal.org.uk/How+to+Help/Shopping+Online+for+Weston+Park.htm.
There are many places you can shop at, including shops like M&S, Currys, Tesco, Boots.. places everyone shops at. And it wont cost you a penny more than you'd be spending anyway.

Registration's easy.. it'll only take you a minute or two.
You can also register with Easysearch, to help raise a bit more, without even shopping.

I hope this doesn't come across as being 'spammy'. I just want to make people aware that they can help raise funds for this hospital, who've been so good with me, over the past year.


In other news..

Not much to report really. I'm still feeling better, with the steroids (praise the steroids!). I no longer feel my death is imminent, though it could be.. who knows.
I'm still able to eat, and don't feel sick all the time anymore.
I saw my onc yesterday, and I've put a couple of pounds back on, since my last onc visit, three weeks ago.
I still have awful stomach ache/pains, and a dodgy tummy, which I'm fairly sure is down to the Xeloda/capecitabine chemo tablets.
I started to get hand & foot syndrome on my feet, but Udderly Smooth cream seems to have rescued them, for now.

I had an ok birthday, though I wasn't too well with my tummy.
My lovely friend Lisa, had a star named after me.. a beautiful present, from a beautiful person :o)

I had a fair amount of money given to me, for my birthday, so was forced to go shopping again at the weekend!
I've also ordered something I've wanted for as long as I can remember.. a harp! I eagerly await it's arrival!

Shopping

I felt I had to come write something here, after I just heard that my cousin found my blog, and it made her cry.
Oddly, I was trying to look her up on Facebook, yesterday, but couldn't find her.

So, I've been feeling a little bit better, over the past week or so. I've started taking steroids again, which seems to be masking some symptoms, and maybe helping the anti-sickness meds to work.
I couldn't eat at all, a couple of weeks ago. I had no appetite, felt sick all the time, and I'd started to be sick too. But the steroids seem to be helping.
I can eat a bit again now, which is nice. It's also nice to be able to do a bit more than just sit on the sofa, feeling like I'm going to throw up any minute.

At the weeekend, James and me went out, for the first time in three months.
I've felt too ill to go anywhere apart from hospital (well, I felt too ill to go there too, but didn't have much choice). But on Saturday, James wheeled me around Meadowhall, in my wheelchair. It was just so good to get out!
On Sunday, we went out for lunch.. I had steak. I couldn't eat alot, but STEAK! I love steak, and haven't had that for months either.

I still have horrible stomach pains, and a dodgy tummy, from the Xeloda/capecitabine chemo. And the hand-foot syndrome (sore, cracked soles of feet and hands) seems to have started now too. Only on my feet, so far.. they're just really sore, despite using every moisturiser/emollient known to man, and taking tablets that are supposed to prevent it. I was hoping to escape that one. I was hoping to escape all the side-effects, really!

Yesterday wasn't a good day. I was up in the night alot, the night before, with a bad tummy. So I woke up feeling grotty, tired, and still with a bad tummy. But I took some steroids, went back to bed for a couple of hours, and felt a bit better when I got up again.

On a shiny note.. it's my 32nd birthday tomorrow (3rd). A few weeks ago, I was doubtful I'd make it.

My 'Death Book'

I'm not sure if I've mentioned this before, but I have a little red leather-covered 'death book'.
I created this book when I found out my liver was failing, the cancer in there was growing again.

It talks about how I want things to be at the end.. where I want to die, what kind of funeral I want, the music I want at my funeral, certain things I want certain people to have. That kind of thing.
I made my dad aware of my 'death book's existence, because he obviously needs to know about these things. I told him to read it, whenever he wanted.
He told me yesterday, that he reads it every morning.
This all seems so wrong. My dad shouldn't have to be reading about what his daughter wants, when she dies.

I feel like I'm robbing him of something. I feel like I'm robbing James. And I feel like I've been robbed of a life I'll never have the chance to have.

I've been thinking alot, about the things I never had chance to do, and now never will.
Getting married, buying a house, at least having the option of having children.
Just normal things that most people take for granted.
I think I'm becoming more and more angry about it, by the day. I still don't feel well enough to go anywhere, or do anything, so I've got far too much time to think about things like this.

I'm so sad, angry, upset, and a whole host of emotions that I don't even think there are names for.

Normality & Children

I keep having dreams that things are 'normal'. That things are as they were before this cancer crap. In my dreams, I have long hair again. I go out. I go to work.

This morning, I woke up thinking it was time to get up for work. I haven't needed to get up for work in over a year. Then the tears came.

Then I watched a short piece on TV, about the childrens cancer department, at Great Ormond Street Hospital.
It was only on for about fifteen minutes, but it really choked me up.

These children have had no life, and yet some were facing death within a couple of weeks.
At least I've had a life. Albeit not as long as I'd hoped.
I had a wonderful childhood. My home-life was never turbulent (well ok, maybe it had it's moments when I was in my teens!), my parents are still together, I always had everything I needed, and most things I wanted, too.
I had horses, when I was a teenager, which I loved.
I've had jobs I loved. I have friends I love, and a man I love. And I've been loved.
I've had experiences, and lived my life the way I wanted to live it. But some of these children have spent most of their lives in hospital.

But, no doubt my own problems will remain more important to me, than anyone else's problems. Just like everyone else in the world's problems, will still be more important to them.


I had my onc appointment on Tuesday, which, to be honest, I was dreading.
I've been feeling worse and worse. I can't walk anywhere, without getting completely out of breath, dizzy, and my heart beating really fast.
I almost keeled over in the hospital lift, and my dad had to hold me up, when we got out.
I have no appetite, feel sick all the time, I sleep alot, and generally just feel really really grotty.
But liver function tests show that things seem to be 'stable'. I'm not entirely convinced, to be honest.

We spent the entire afternoon at hospital; in and out with my onc, blood tests, chest x-ray. And I missed my Reiki appointment, which was a shame.

Exciting news of the week..
My wheelchair's arrived.
I just need to feel well enough to leave the house, now!

God

I received a message today, saying that I don't seem to say much about god.
That's because I never have, don't, and never will believe in god.
I'm pagan/spiritual/agnostic. I can't, and have no desire to label myself any further than that.

The same person then travelled back in by blog, to last August; when I'd had a bit of good news about my liver.. there was no progression. This is apparently thanks to god.
I'm wondering if this person has read about any of the shit I've been through since last August? Brain tumour, brain surgery, months of not being able to walk or see properly, whole brain radiation, progression in my liver, jaundice, feeling too ill to even leave the house now, wishing I was dead?
If the good things are thanks to god, all this awful crap must be thanks to god too. Wow, god must really love me, to put me through hell.
I'm sorry if anyone takes offemce to this, but it's my blog, and I can write whatever I want to write.

None of this is meant to be taken personally by anyone. And while I DO appreciate people praying for me, to whatever force they choose to pray to, I do not appreciate being told that I should thank god for the good days.
I don't appreciate having god thrust upon me. I'd never do that to you, with my beliefs.


Anyway, onto..
Liver, Yellowness, and Hospitals

I saw my onc last week.
The jaundice is being caused my tumours pressing on, and blocking my bile ducts.
He decided to stop the chemo, while we attempt to drain the bile. While my bile ducts are blocked, there's a high risk of infection because of all the gunk trapped in there.
This risk is increased because chemo is surpressing my immune system. So chemo has been stopped for the time being.

On Wednesday, I had a stent put in my bile duct.
This was one of the most horrendous things I've ever experienced.
I was supposed to be under heavy sedation, but didn't feel like I'd been sedated at all. So was all too aware of every god-awful minute of the hour it took.
It literally felt like I was having my stomach ripped out.

There's a chance I'll have to do it all again, to put another stent in the other duct. I've no idea how I'd face that.
Nothing seems to have changed so far anyway. I'm still yellow, itchy, and feel like crap.
I'm so angry with myslef, for taking the decision to try and get on the Tykerb trial, in December.
Chances are, if I hadn't waited for that (which I didn't get onto anyway), and had started the chemo straight away, I wouldn't be in this position now.