Wednesday 23 January 2008

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.

Tuesday 1 January 2008

It's 2008

So, christmas has gone, and the new year's here.
Happy new year? To be honest, I'm a bit sceptical about that one!

I wish I'd have appreciated those carefree christmasses more.
Those christmasses where I could laugh, joke, eat, drink, with my family and friends, without any more pressing worries than going back to work next week.

Because, you see, no matter how much I told myself and other people, that I was going to enjoy the time with my family, because this will probably be my last christmas. No matter how much I didn't want to think about how cancer's ruling my life, I did think about it.
Every minute of every day, I thought about the fact that I probably wont be here with them, next christmas.

I've been taking a cocktail of painkillers and anti-sickness medication, just to help me face christmas dinner (which I could hardly eat any of).
Constant nausea and pain, don't a merry christmas make.

If anyone out there is thinking "What a waste. There are people far worse off than you. You should be grateful you have such great family and friends. And should have just forgotten about cancer for a while, and enjoyed christmas." I challenge you to live life in my shoes, and see if you feel any differently to how I feel.

Last year, my doctor told me I'd most likely die next year (he actually said six to nine months. Which is now four to seven months).
Next year is now this year. And that's frighteningly close.

I've been in my flat for almost six months now. That time's just flown by. It's no time at all.
Six months is nothing. It goes far too quickly.

I've been with my other half for almost two years. We met when I'd just finished my first course of chemo. That was before my cancer became 'terminal'.
I had hope for the future. We had hope for the future.
Now, two years seems like no time at all. It's gone far too quickly. I want a lifetime with him.. my lifetime and his lifetime. I'm furious with cancer, for cutting this short.
Because even while I'm still alive, it's being cut short.
I'm tired alot. I have no energy. I feel ill alot of the time now.
We can't do the things we should be doing.. things I want us to be doing. It all just seems so unfair.


When I look at him sometimes, I can see in his eyes, what this is doing to him, and it breaks my heart. I know he tries to hide it, just like I try to hide it. But it's there.
I can hardly bring myself to look in his eyes now.

I look at my family, when it's mentioned. And while they seem more willing to listen, when it's mentioned now, I can see how broken they look.

And I think of all the other people, in similar and worse situations. And I wonder how they deal with this happy new year.



It's 2008, Part Deux

Having just read Minerva's blog.. a blog I visit regularly.. I came across a link to Jenny O's blog.
I found this post, which makes me feel almost ashamed of how I feel..


"My aunt Sylvia died this morning. She told her (grown) kids to go to
school, asked for a drink of water, and took her last breath. She had end-stage
pancreatic cancer and multiple myeloma, and she was at home, in a hospital bed
in her living room.

We lived our lives at a great distance. Sylvia lived in Texas (San Antonio,
Houston, Kerrville), ran a balloon delivery business, married a few men (not at
the same time), and loved fiercely. She was the strongest and most indomitable
person I ever knew. The way she lived with cancer taught me how to do it: You
live. Just keep living. Keep doing things you want to do. If your bones are
brittle, go to a water park and ride all the slides, and then take meds and
sleep all the next day. If people you love are there, spend every ounce of your
energy laughing with them, and then take meds and sleep all the next day. Don't
be "sick" with cancer. It's an annoyance. It thinks it's in charge, so let it
think so, but quietly go about your own business and don't let it stop
you.

Until it's too strong. And then, recognize that you're tired, and lie back
and marvel at the fresh, clean taste of cold water, and listen to songs that
have always moved you, and wake up a few times a day to smile at the faces of
the loving ones who surround you. Go home, and have your dog lie on the bed with
you, and open the blinds each day to watch your own neighborhood and your own
yard. Sleep, while your heart keeps beating and beating, while your nails turn
dark and then pink again, while your breathing gets ragged and then smooth
again.And then, one morning, speak softly to your children, and
just...Stop."