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.

Well..

I know it's been a while since I've written. And I apologise to those who've shown concern for where and how I am, and I haven't responded too.
I just haven't been well enough to spend time at the computer, let alone find the energy to write here.

After being woken in the middle of the night, a couple of weeks ago, with awful pains in my side, yellow eyes, and feeling particularly ill, I found out that my liver had begun to fail, and wasn't functioning well enough to take part in the Tykerb/lapatinib trial I'd been pinning my hopes on.

An appointment was promptly made with my oncologist for the following day, who started me on the chemo (Xeloda/capecitabine) that I could have started six weeks previously, had I not been waiting to get on the trial.
This chemo is in tablet form.. twice a day for two weeks, followed by a weeks 'rest'.
The Xeloda has given me stomach cramps, and a dodgy tum, for two weeks so far (and still counting). It's kept me up half the night, aswell as plaguing me during the day.

I was also sent for an ultrasound liver scan. The doctor doing the scan decided that the cancer in my liver hadn't changed much since the previous scan, before christmas. But that my bile duct was being obstructed by 'something', as yet unknown, hence the jaundice.
Tomorrow, I'm to have an MRI scan of my liver, to try and establish what's going on, why my bile ducts blocked, and if a liver stent might help alleviate the jaundice symptoms.

I've never known much about jaundice. I just thought it made you yellow.
And yes, I'm yellow.. my skin, my eyes. Particularly my bald head.
What I didn't know is that it makes you feel so ill. Sick, tired, upset stomach, itchy, and just generally horrible.
I'm itching like a crazed woman. All my skin itches constantly. It wakes me up in the night. I'm itching all day. I have scratch marks all over me, made by my finger nails from the constant scratching.
I read somewhere that the itching sometimes drives people to suicide, and I can well believe it.
My onc prescribed colestyramine to try to help with the itching, but I'm not convinced it's working.

So, this is why I haven't been here. I haven't been anywhere. I've felt too ill to go anywhere. Apart from to my parents. I've now moved back to my parents house, because I haven't felt well enough to be by myself, or take care of myself properly.
I'd love to be able to go somewhere.. out for lunch, or even just out in the car (with someone else driving, obviously. Seeing as I'm not alllowed to do that anymore). But I can't even sit in the car without feeling horribly ill and exhausted. Never mind get out of it, at the other end of a journey.
I hate the thought that I might never be well enough to go and visit my friends at their homes, again.

I suppose I hate feeling that I have no 'hope', or future left. I feel that I've really had enough now, and I just want it all to be over.
The future always excited me. I loved planning things, and doing things.. holidays, what I was going to do for work, etc. I loved my job, before I had to give it up for this cancer crap. I'd always dreamed I'd have my own little witchy shop one day.
So many things I wanted to do, and places I wanted to go. I've never even been to the south coast of the UK.. always wanted to.
I wanted to go to Edinburgh again, and North Wales.
Now I feel that's all gone. I have no future to plan for, or get excited about, anymore.