Topic: A place to talk death and dying issues

Jun 8, 2011 11:26AM texasrose361 wrote:

1st off- i love this post! I am not near the end yet but like many of y'all said you know its looming ahead. I have so many thoughts and fears about dying so this post is truly a blessing for me to read. (i never talk to anyone about it so i dont sound morbid or something)

Imbell- that is pretty crappy. Even if you had a larger family that is a lot of death in a realativly short time. I agree there isnt enough out there on tv for us to gain from. mostly the feel good stuff...

Ma111- i am going back home to visit and want to do a huge bbq/party because a lot of these people i havent seen in 10+ years, but i am afraid its going to turn into one of those "lets see her before she passes" type of thing... Is it wrong for me to start lying and tell people i am "all better?"

I have been putting off talking ewith my dr about putting me on an anti depression med- but i am def going to ask on my next appointment which is monday- i just feel that i cant handle the depression myself... i dont want to do anything, i look at my dishes and it make me more depressed!

thats-life- i get that a lot too "oh dont say that, you'll be around for YEARS" I want to talk and work through my feelings! I think its too hard on our loved ones to even think about it let alone say it outloud. Take up knitting LOL thats too funny!

Chickadee- Sounds like you're related to me! I have a lot of "winners" in my family too! Good for you to stand up and send your mother off to your brother- i cant beleive that no one in your family offered to take care of her knowing what you're going through!

Coolbreeze- LOL i wanna get my affairs in order if it means Brad Pitt LOL- thats my thing too i need to get rid of stuff- like why i am i holding on to a lot of this stuff!!!!

Lori- i do write in a journal 1 for the kids and one for my husband. i have thought about the video messages but somehow i cant bring myself to do it. I think to myself that NOW is the right time- i am health(ier) my hair is grown in and i look good (dark circles under my eyes have gone) so if i am gonna do a message it would be now, but thats as far as i get.... When did you write the birthday cards? Right at you dx or more recently?

FightingF8- OOOOh that boils my blood! Of course we are all dying and i hate when people say that, i wanna say to them "i wasnt aware that you have diblitating joint pain too!" (or something else that i am going through at that moment) Because our dying comes with so much more than someone AGING (not dying!)

Kezzie- that sounds good- i may have to do a memory box... or maybe memory videos (like telling my fav memories on tape)

Pam i get that too- my last scans showed stable and so everyone is like "well thats it!" no sorry that not it, i will still have to do treatment to keep them stable and God forbid there is any progression! BTW happpy to here youre NED- question about your comment since you're on hercepitn brain mets wil lbe the culprit- explain LOL i am on herceptin too does that mean brain mets are more common for those on herceptin?

Jun 8, 2011 11:45AM Suze35 wrote:

Thank you for this thread.

I'm much like Pam in my status - Stage IIIc with TN that was chemo resistant by the end of my therapy.  I still have a positive node that we are treating, and while I am currently NED everywhere else, I am realistic and so is my doctor.  We are just trying to buy time.

I'm really trying to get my DH to talk about my death and its consequences, and it is hard.  He travels for a living and LOVES his job.  I stay at home with the kids.  We don't have any family where we live.  He is freaking out a bit about the idea that he will have to change his career and stop traveling, and he is terrified of being a single father.  So he just doesn't talk about it much.

My mom, who is staying with us, also won't really talk much with me about it, my wishes for a funeral, things I want to accomplish before I die, the bucket list car I just bought...she just can't cope well with the thought of losing her daughter, and will only focus on me living until told otherwise.

I feel like I'm walking a knife's edge, in between life and death.  I have no real reason to be hopeful that I will beat this, except so far I am, but I can't start planning for a different fight because I'm not there yet. 

I don't have any answers, but it is good to read everyone's response.  Thank you.

Jun 8, 2011 01:28PM - edited Jun 8, 2011 01:29PM by lorieg

Timothea- I started all my projects which include  to all my close family/friends and my husband when I was diagnosed stage IV in 2009.  I had all the kids birthday, confirmation, wedding, baby, etc cards done the first few months after my diagnosis.  I would sit in my room and do a few at a time when I had a chance.  The younger birthdays don't say a lot, but I love you, you are amazing, etc. With the older birthday cards, graduations, weddings the messages got longer and deeper.  it was not an easy task.  I cried a lot! 

Susan, haha, thanks.

Another thing I did which was important to me because my kids are SO YOUNG.....I went to Tiffany's and bought them each a special gift.....both crosses which I had engraved to be given to them when my husband thinks it is appropriate....teens or so since they are not exactly inexpensive.  I just hope my husband doesn't forget to give the gifts!

I have what I can an "instruction manual" for my husband when I kick it.  It has i with different subjects of things i do now or wish him to do in the future.  I am such a flippin control freak!

I was a "weak" stage IV from the start but knew I would eventually have big preogression which I did this past February/March.  It was nice that a lot of my projects were done, but I am still working on more.  I think of or find new things to do all the time.  My kids are going to be sick of me even when I am not here!  haha!

One thing I have not done is address what I want done at a funeral/memorial, etc.  I have faced a lot, but that is a topic I just don't want to think about.  I feel bas as I should make it easier on my family, but I just can't do it.

Jun 8, 2011 01:55PM memory wrote:

I'm intruding in your group to post this cautionary tale: an acquaintance of mine, a lovely man, died of cancer last year. He had a particularly aggressive type, and despite chemo and rads he succumbed in little over a year. He did almost no preparation. I don't know if they were hoping for a miracle or what; I do know his family kept him in fight mode. His wife, especially, was a wreck over his diagnosis, and maybe she didn't want to face the fact that he was dying. Also, if I were him and had to face the fact that I'd never walk my beautiful children down the aisle, never see my grandchildren, I might be in denial, too.

I won't go into details because I don't have permission, but suffice it to say that the aftermath was a mess. I've come to the conclusion that preparation is one of the best last gifts we can give to our loved ones. My husband and I have a will, POA and directives in place; my insistence, when he presented with heart disease. Even though I have a good prognosis, I have done things like make sure all my retirement accounts go to him, if I go first: he will need the money, I've decided, if he lives a long time, given his health issues.

Jun 8, 2011 02:26PM Still_Beautiful wrote:

My biggest fear is dying and leaving my two kids behind without a mother

Jun 8, 2011 05:02PM Lena wrote:

Excellent thread. Thank you. ma111, for starting it.

I do have a living will/advance directive/power of attorney which gives my Pack Rat the authority to speak for me medically if or when I can no longer speak for myself, and since we've talked about it, he knows what I would choose to do for particular medical situations. His name is also on my checking account (the only money I have, and it's only just enough to live on) so he can pay my bills and rent for me if necessary, too, or if I can manage things tlll the end, just claim whatever's left, if any, when I'm dead and have no more need of it.

I have very little of real material value, If I was going to die today, which I doubt, the only things I have which anyone could use or sell would be a 5 year old Toyota Corolla, and some 1995-2005 era Macintosh computers. I have no houses, no investments, no insurance, no jewelry. I also have no children to worry about, thank goodness (getting spayed may very well be the smartest decision I ever made in my whole life! LOL). I actually started to write a will but haven't finished it yet. I know I want my Pack Rat to have the car and my Macs -- he doesn't need them like I do while I'm still alive, but he might find them handy for something down the road -- and my clothes can go to Goodwill, but I don't know what to do with MY music (archival master tapes of the seven albums I composed and recorded in the 80s) or my rat collection. I guess leave them all to him too. And on top of having next to nothing that's actually worth any money, I don't even want a funeral service -- I'm not religious and I hate funerals because I think they're an expensive ripoff, the funeral industry taking advantage of grieving loved ones when someone dies. Good thing I feel that way because it'll probably use up all I have left to pay for a cremation! (and you'd think I'd look into arranging that too, right? wrong!)

So I don't need or want all that much, I'm worth next to nothing in terms of material value, so it should be an easy document to finish it. I'm not usually a procrastinator either; I'm one of those disgusting punctual prepared types. Like today for my appointment with a new eye doctor, I showed up ten minutes early with the glasses and contacts I presently wear and a list of all the medications and supplements I'm taking  -- yeah why would an EYE doctor want that?!  The lady who called to confirm my appointment asked me to "bring all your medical information," so OK -- hell I'm a terminal cancer patient so I keep a list in my computer which I regularly update as applicable, and bring a printout with me. And I'm such a gloomy and doomy person anyway, as in eternal cynic and pessimist, wih a mad scientist black sense of humor and was like that for about 15-20 years prior to getting cancer so it's not like I only got morbid when I came down with a serious disease -- so what gives with me on this will thing?

And yes, I bookmarked sites with willmaking software within weeks of my diagnosis (Stage IV out of the gate), which I plan to use after I finish writing "The Final Frontier."  

Imbell, please accept my sincerest condolences for all your lost family members. 

Jun 8, 2011 07:00PM Suze35 wrote:

texasrose - it is such a scary thought, I know, that I cut DH some slack.  He's trying to work through this just as I am.  But it makes it hard when I want to talk brass tacks, like "this is how you pay the bills!"

This conversation is great - Lori and Lena - you bring up very important things that should be addressed.  I need to get started on the stuff for my kids, pictures, videos, cards, gifts...and I need to do the important things, such as a will, as well.  I'm like you Lena, I don't have very much in my name - we do most things under DH's name, it is just easier.  But my car, my jewelry, my shoes (my shameful indulgence), all need good homes.

I did give my sister a pair of my shoes and a necklace the last time she was here.  It freaked her out, but I told her that I wanted to actually see her enjoy them.

I'll have to check out that legal website.  Our will would be pretty straightforward.

Jun 8, 2011 08:58PM lorieg wrote:

PaminWV,

I did not at all mean to minimize or dismiss your feelings, and I hope you didn't think that is what I was doing!  I know as well as anyone the aggressiveness of IBC.  I have spent the last two years reading everything I can about this disease and talking to many other IBC patients.  My MDA onc quoted a study to me about patients who have complete chemotherapeutic response, and I was surprised by the positive statistics (for once!) 

I wish you a life long dance with NED.  If an IBCercan do it, based on what I know about your path report, it's you!!

Lori

Jun 8, 2011 09:57PM petjunkie wrote:

I prepared everything that I could last year, including what to do with my body. I was sad that I couldn't be an organ donor anymore. But then I found a program through our local teaching hospital (University of Washington) and I willed my body to them. They will pick it up at no charge to my family, and it will be used as a cadaver for medical students. Or, they may just harvest certain organs or whatever for use in teaching. Whatever is leftover will be cremated and either sent to my family if they chose that, or buried along with others in a non-denominational service that all the med students attend each year.

My friends think it's a little nuts how happy I was to find this program, but it has brought me a lot of relief. I like knowing that my body will be put to good use. I like knowing that my parents have the number to call and the body will be taken care of. I like that they won't have to deal with a funeral home and pick out a casket or whatever. I think my mother will probably still have a service of some kind, but I've told her that's for her and she can choose to do it however she wants. . . I'll be gone, so it doesn't matter to me if she wants to do a church thing or outdoor party or anything. 

Jun 8, 2011 10:22PM steelrose wrote:

All of you ladies are amazing! When I thought I was on my way out last year, I did the health care directive, cremation plans, and will from my hospital bed. And I lived! At least I don't have to worry about all of that paperwork now. But I am worried about what will happen if I become very ill again. I'm not married, but I have a sweet partner of many years who saw me through last year.He's freaked out whenever I talk about death or dying. I don't want him to have to take care of me and watch me deteriorate, so I'll probably end up in a hospice house. Not sure how I feel about that either... It all seems very surreal. I have lost both parents and many others along the way, so I'm not unfamiliar with death. And I'm not in total denial because I address these things but still... wow... anyway... I'm currently NED and holding on tight!

Love to all...

Rose.

Jun 8, 2011 11:32PM Mazy1959 wrote:

Pamin..I understand how you feel. No one wants to talk about this stuff but us it seems.Something I do for those I know love me to pieces but cant handle discussing my funeral etc is that when we are all together, say at a party or just chatting while playing cards...I will bring up someone else who has passed. While speaking of their funeral..I just casually say things like how much I liked that type of service. Or which funeral home is my fav etc..Just over time I do this. I have a sis in law who I know will remember these things. I am certain she will be a part of planning services etc. She will make sure my clothes are all matched with my earrings, etc. LOL..Other than my hubby and kids all I have left is cousins and an uncle. I have 2 cousins who have been there thru thick and thin but one of them is technically sicker than I am. She has lupus and her kidneys are starting to fail. So my hubby will most likely turn to his sis for help. His sis also had a great idea that I think I will help get started. She thinks it would be great if instead of waiting for each of us to pass away...give eachother some special momento now. Maybe even give things like that at xmas instead of store bought gifts. I have some things picked out for her specially since we have gone thru alot together. HUgs and LUvs, Mazy

Jun 9, 2011 05:31AM PizzaDad wrote:

I don't even know where to begin.  I don't raise the issue and my wife doesn't raise it often either.  She has no will.  We have life insurance....when I was 32 my 30 yr old wife died from complications in child birth, so I made sure we both have insurance.  We still have two kids at home, 12 and 15.   Not gonna say money won't be an issue, but I will be able to pay off the house and should be able to pay the bills from my income. I have a good job.  We need a will but I havn't wanted to broach the subject.  A living will also, because she has told me that she doesn't want to hang on at the end...but that hasn't really been defined.  I have no idea how my bride would want to be burried, or where.I know this needs to be discussed, but I don't want to bring it up.  We are planning a vacation with our children (including the 21 year old) at the end of the year.  My wife is also applying for a promotion.  We spent the evening tonight going over possible interview questions.  Maybe we are sticking our heads in the sand, but I am glad she is being positive

I know we have to deal with these things because her health could turn on a dime.  I just don't know where to start.  Or how.

Jun 9, 2011 05:47AM - edited Jul 23, 2011 05:32AM by thats-life-

Jun 9, 2011 09:16AM lorieg wrote:

Just FYI.....a durable power of attorney for healthcare is more important than a living will......at least here in Ohio.  A living will only comes into play if you are declared brain dead by two different physicians.

Like I said this is the case in Ohio.

 Lori

Jun 9, 2011 02:45PM Lena wrote:

Steelrose! I KNEW I forgot something! I'll have to find a hospice house that takes nearly indigents, though. But I'm sooooo with you -- I do NOT want my Pack Rat to see or deal with what's left of me if I get all debilitated!