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.

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."

Guilt

I was having a bit of an email chat earlier, with a friend, and started talking about how guilty I feel about things.
It's not something I let out, very often. And when I do, the usual response is "But it isn't your fault."
I know that, but I can't help feeling how I do. And I'm fairly sure you'd feel the same in my situation.

My mum has early onset alzheimers.
She was diagnosed around two years ago, in 2005, just after I was diagnosed with stage 1 breast cancer. But she hadn't been 'quite right' for a while.
Before I moved into my new flat, I lived with my parents. And much as I really do hate to admit it, the situation with my mum was one of the main reasons I moved out.

I love my mum to bits, and get along with my parents extremely well. We've become even closer since my cancer diagnosis. But the whole situation with my mum was really having an effect on my, already delicate (thanks to cancer), state of mind.
I felt guilty when I was at home, because I didn't feel I was doing enough with her. Or enough to help my dad (who's now her full time carer. He gave up his job to care for her). But I was struggling to cope with my mum's condition, aswell as my own.
Cue feeling selfish, aswell as guilty.

Now I've moved out (and don't get me wrong, I'm still loving having my own space, and I do feel I've done the right thing), I feel guilty for not spending as much time with my parents.

I also feel guilty for putting my family (and friends) through all my cancer crap.
This is the bit where people tend to say "But it isn't your fault. You can't do anything about it."
I know that, but I feel like I'm letting people down.
Not only does my dad have my mums illness to deal with. He also has mine.
The chances are that he'll lose his wife to alzheimers, and his daughter to cancer.
I'm very aware that this may not be too far into the future. And I wonder how on earth my dad's going to cope, if both of these happen close together.
I feel guilty for putting him in that position.

I'm writing this here, because no-one's being forced to read it.
I'm not offloading my guilt onto anyone. Just putting it out there in the ether.