Thursday, 28 February 2008

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!

Sunday, 3 February 2008


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.