Friday, 7 March 2008

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.


madame mel said...

hi dee, its mel from alfreton. i am so sorry, i dont know what to say, i email ages ago but its been so long since i heard from you i didnt know the cancer had come back. if you ever need anything at all, ask. love mel x

nat said...
This comment has been removed by the author.
bionicwoman said...

It's impossible to find words to comfort but if there were any that would help I'd send them all!
Having just been diagnosed with secondaries myself I can identify with how you're feeling although it's early days for me.
The death book idea is such a good one -morbid as it may seem to some people but I guess it's one way of trying to stay in control when the disease seems to be in control. Your writing is so powerful and I hope it helps you as it clearly helps others including myself. I'm still at the bewildered nd trying to be positive stage but I'm sure the anger will come!
Thinking of you.

dippykate said...

DEE - I'm so sorry to hear things are not much better for you.
I am angry for you and others in our situation but somehow it's the sadness that overwhelms me. I have no energy left to be angry for me but can be for others.
I have a 'death' book too but find my hubby won't read it but knows it's there so he will know what to do when my time comes.
I expect your dad actually gets some sort of comfort knowing you have written everything down even though as you say it is so wrong for a parent to lose a child.It will be helpful to him in the future and is something that he can use, knowing he can do everything absolutely right for you. I expect he is already doing that anyway from what you have said in the past.
You have a right to be angry. You have been cheated out of lots of things in your life and I don't know what else to say apart from that I'm sorry and angry on your behalf and that of James' and your family and friends.
Dee - I think of you everyday and you a wonderful person that does not deserve all this ****.
Please take care and hope you feel better soon and are able to get outside in warm weather - I wish.
I hope you find writing your blog useful. Lots of people - you know who I mean - are reading your blog and wish you well and can not believe how quickly this has happened to you and how much you do not deserve this.
Love Kate

Rosie Barthelmess said...

Hi Dee, it's me, Rosie. Thank you for the kind comment on my blog. I am so sorry to hear about your cancer's progression, and I wish there were something I could do. For you. For my mom. For everyone who is living with cancer.

We're finding paperwork around the house here that says my mom has been living with her cancer for about five years. Of course, no one thought to look into a randomly large thyroid nodule back in 2003. She was in her 60s, and lots of people "that age" get "nodules" so I suppose no one just ever thought to look at it.

It's so hard to be going through things like this, or to have been going through them with her like I did in her final days, wondering and wishing there was something you could do. To stop it. To fix it. To manage it.

You'll be in my heart every day. And as a pagan myself, I won't shower you with God talk or God blessings... but I will tell you something that my mom said to me all the time. And I only share it because even if you can't relate it to everything, you can relate it to some things. I've been telling myself a lot lately. She used to always say to me, "sometimes, blessings don't feel very good."

Around your sadness and your anger and your everything else, try to see the blessings. Even the little ones.

For example, I feel like getting to know you will be a blessing at least for me. And for many others who have this in common with you. Your voice will touch so many.

Brightest blessings to you.

nat said...

I'm so sorry. Maybe you could have a "yang" to the death books "yin" - a life book? Where you write about things that give you joy each day? Or where you imagine that you are doing all of the things that you want - an imagination book.
Regardless, I truly am sorry that you are going through this. No one should have to deal with cancer.

apologies - I removed the first post, because I wrote "ying" instead of "yin" and I would die of embarrassment if I didn't FIX the error! ;)

Also, I wanted to say that I like the idea of a death book. I'm actually going to start looking for a fitting one for me. I like that yours has a red cover.

Anonymous said...

I am sorry to hear that you are having a rough time. You really don't deserve all the crap that you have been through and as someone else said, being angry is pretty understandable. Thank you, though, for sharing your feelings and your story, and for being inspirational - you really are.

I do hope that you are able to get out and enjoy some fresh spring air. I am thinking of you and sending positive energy/blessings your way too. Hugs, Tanya

Garnet said...

Hi Dee. I think your death book is a great idea. I've thought about starting one of those for myself one of these days. But I also really like nat's suggestion that you also do a life book. Maybe you could put in it all of the things that you HAVE accomplished or enjoyed in your life. Birthday cake. Going to the mall. Your first kiss. Those sorts of things. Just a collection of things that you have enjoyed or were most important to you in your life thusfar. And maybe also put in there things you would like to do - such as places you can go in your visualization times (if you have them), things you would love to do if you were feeling better than you are. That might be very difficult, almost impossible for you right now so maybe not that last part. I know on my bad days, the last thing I want to do is think about the things I cannot do! I have enough trouble coming up with the very few limited things that I CAN do!

I hope you aren't offended by me asking what are the next steps as far as medical treatments? What have the doctors said? Have you run out of options? (I only ask because I haven't had the chance to read with you through your whole ordeal and I haven't had a chance to read all of your older posts yet to find out.)

ARe you a reader? Would you find comfort in reading books on death and dying by Elizabeth Kubler-Ross maybe? Or Tuesdays with Morrie or The Ten People You Meet in HEaven by Mitch Albom?

Or maybe some psychological counseling? I know from personal experience, my shrink is about the only person I can talk to about death and dying and what I want or don't want when my time comes. I can tell her anything I feel about death and how sometimes I look forward to the adventure of the afterlife, seeing my mom and grandparents again, etc. But I can also, a minute later, talk to her about how terrified I am and how much it breaks my heart to leave my husband all alone, a widower at such a young age, etc. Psychologists are a great asset during this time. I highly recommend it for you, especially right now.

Take care. Take it easy on yourself. Keep writing. Clearly, your readers miss you and love you and think of you often - myself included.


Anonymous said...

Hi Dee
Just wanted to let you know that i am thinking of you. It makes me so angry that someone so young has to go through so much. I hope that you will get some relief from your symptoms and will be able to get out in your wheelchair.
I think that your death book is a great idea. I started one when i was diagnosed. I figured if it was all written down, then there would be no excuse for not having the arrangements that i want complied with. I am sure that your Dad will appreciate having everything written down although i am sure it just rips his heart out to have to read it. I also found that it is therapeutic to write all of your thoughts and feelings down and helps you to feel like you have some control over this horrible disease.
Thinking of you Dee

Anonymous said...

Very sorry that you are going through all this, its not fair, you are a young woman who obviously has a lot to offer, this shouldnt be happening. Wish I could say more but not very good with words, but thinking of you and your family at this time.

Anonymous said...

Hi Dee
Just wanted to let you know that i am thinking of you. You are such a special person and are a huge source of inspiration to so many.
Sending you loads of hugs across the miles

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