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Avatar universal

End-of-Life Planning?

What no one wants to talk about but those of us with cancer surely think about…

I have always been a planner.  When I began recurring, I panicked but once we had a treatment plan, I was fine.  Also, I’ve had good times and I’ve had bad times, and I know you don’t always get warnings about the bad times.  Things can change so fast.  Last month, I went from working full time and enjoying life to being hospitalized, having surgery, major tumor growth, and having to take nourishment through a tube—in less than one week!  Everytime I go into the hospital now, I wonder if I will come out again.  So, I’ve already made some decisions about my death.  I can make them now while I am relatively pain-free and not rushed.  Probably the most important one being unusual these days—I don’t want to die at home.  I have lived in this town for less than two years, and lived here only 9 months when I was diagnosed (my company moved me here for a job).  The move happened so fast, that we sold our house in FL and decided to rent here and look to buy later.  Well, we won’t be buying anytime soon, now with my health issues and work uncertainty.  This place I live is just that and holds no attachment for me.  Fortunately, we have a great oncology floor at my hospital with a very good nursing staff.  My understanding is that you can have hospice in the hospital, too.  My husband is a hoverer because he wants to make everything right, and he would never get (take) a break at home.  I have to force him out of my hospital room.  The burial stuff is easy, as I think it’s a waste of real estate.  

I’ve also been told that ovca will be what “gets” me, and I’ve discovered I’m OK with that.  I actually like knowing this, as I feel somewhat in control.  I also know that I will have warning—that I don’t have to worry about being a frail old lady who drops dead in the supermarket aisle with her droopy breasts bared to the public in an attempt by paramedics to save her life!  I’m sorry to be flip, but I think a terminal diagnosis earns me the right.  

So, have others thought about these end-of-life issues or I am just weird?  Don’t waste your pity on me, as I don’t feel particularly sad thinking about these things, because as I said I like to plan and I do feel some measure of control over my life.  It’s actually very empowering.  Can we please hear from only those who are actually dealing with advanced cancer, as there is very little of that on the forum these days?  Unless you actually have cancer, your perspective on this topic is far different from those of us who do.  I hope you will respect this.  Paula
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523728 tn?1264621521
Thanks for sharing your mom's story.
Helpful - 0
534546 tn?1225027975
Because I was encouraged to share this...

I know that you asked for comments only from those in your shoes; however, I felt compelled to share my experiences with you.  As a daughter who recently lost her mother to ovca, I can tell you that the more you do before hand the better it is for your loved ones.  Shortly after her diagnosis and first chemo I spent a couple of weeks with my mom and we talked about many of these things you're thinking about.  Over the months that followed I could see the peace envelope her.  Not everyone you love will understand or be able to talk with you about it, my brother never could.  His inability to discuss the possibilities and to grieve was the only thing that saddened her at the end.  I will always cherish the extra one-on-one time I was able to spend with my mom and her openness with me through the eight short months after diagnosis.  My mom and step-father had all the paper work in place, every one knew mom's wishes not only about property but about extra-ordinary measures, treatment, services and interment afterward.  Her preparation has made dealing with the aftermath simpler.  I have friends who have lost parents who hadn't prepared or updated the paperwork and it was a nightmare on many levels.

Because of discussions with my mom I knew her wishes and preferences, and when it came time I was the one who was able to encourage her not to be afraid and to support her in her decision to return home for her final weeks.  We were lucky in the end, she passed away quietly in her sleep, in her own bedroom, in her own house, with her husband and myself by her side.  

This experience is not something I am able to talk about with anyone I know as no one has been in my shoes in the same set of circumstances.  But it is something I do not regret and am thankful that I was able to do for her.  I was able to what I needed to do because everyone knew it was what she wanted.  The physical requirements of taking her home were more than my step-father could deal with on his own.  When your time comes, and I hope that that time will not be for many years, but when it does if you want to be in control of your surroundings and your own death then you will need everyone around you to know and understand your desires and exactly what is important to you.

While the initial discussions may be uncomfortable and ackward, press on, small things in small discussions, it's a building exercise.  

I wish you well.  Stay strong.
Suz
Helpful - 0
272338 tn?1252280404
momofsandj,
   Thank you very much for pointing this out to me as I knew nothing about that. I will definately check into this.
   Chris
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Avatar universal
What you have done is a terrific step, but you should make sure that your state recognizes a holographic will (handwritten without the formalities) and whether or not it needs to be witnessed and/or notarized.  Otherwise the money part will not happen the way you have written it down but will go the way your state says it goes if you don't have a valid will.  I'm sure you can get form wills on Quicken, Tax Cut, or through Staples that will cover the money parts if you don't want to pay a lawyer.  A living will and ethical wills are both very different animals.  Just trying to be helpful
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272338 tn?1252280404
  I am glad to see this post brought back up. This is one side of this disease that we do not like talking about but need to.
  I never had a will of any kind. But after being asked every time I went to the hospital, I realized that I needed to do something about that. I have made a living will that is also somewhat of an ethical will. I bought a journal, started the first page with the ususal about being in my sound mind, etc and began writing down where I wanted everything to go, what to do with things, what to sell, where I wanted any money to go, and this is all intersparsed with notes to this person and that person. Sometimes the notes are a little comical, sometimes they are serious, but since doing so, I have felt much better. An with it being in a journal, I can add to it when ever I want. Everyone in my family knows where it is. I am still planning on expressing what I would like in the way of a memeorial service, how I want my funeral handled, the music I want played, and am considering writing my own obituary.
No it was not a pleasant thing to think about and at times even harder to write about. But while I was doing it, I began to feel a sense of relief knowing that things would be taken care of with out a lot of added stress to my famiy.
     Chris
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Avatar universal
I found this great website a while ago on writing ethical wills.  I particularly like the fact that they give you examples that people have actually written.  

http://www.ethicalwill.com/index.html

BTW, I took care of the legal stuff like wills and certainly advance directives and long ago as I'm sure many on here have.  My hospital has asked at every admission if I have an advance directive and gives patients many opportunities to complete them.  Believe me, if I've thought about where I want to die I've already also thought about how I don't want to die.
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187666 tn?1331173345
I just heard about the "ethical will" during some training at the hospital (my husband and I sit with dying patients that have no friends or family available). What a beautiful idea, to share your feelings with your family. Too often we don't take the time to tell them how proud we are of them, what dreams we still have for them, giving them the freedom to move forward knowing our love will always be with them. Assuming it will be something positive, the written ethical will can be read over and over again providing comfort.


Helpful - 0
Avatar universal
I am dealing with recurrences and have all the same feelings you are all discussing  but I am also an attorney -- you all need to have wills -- it will save your families an incredible amount of aggrevation in dealing with the reallyl simple things if you have a will for them to probate and get letters testamentary that will give them the right and ability to handle little things that may slip through the cracks.  You also need a living will or advance heathcare directive that appoints someone to make the decisions at the end if you are not capable of expressing your wishes at that point.  And in the meantime you need a durable power of attorney so if you become incompetent or too ill, your spouse can handle things that may be in your name.  Check all your life insurance and retirement plan account beneficiary designations.  Things may have changed since you first set them up.  If you really want to be a control freak, make a list of things you want read at your memorial services or funeral and have them in a file for your familly, as well as who you would want to speak.....Do an "ethical will" which is just a long letter telling your family what is important for you to know that they will understand when you are gone -- what morals are imprortant to you, what you hope you have passed on to your children, and what your hopes and dreams were and how your family helped you meet them -- it will give everyone some peace.  Finally, get all your financial documents in order and put them in one place along with any online passwords you have to access your accounts or your computer -- otherwise there will be panice when your spouse or other try to start taking care of things.

I hate to be business like, but everyone else has dealt with the emotional side of this and I really have nothing to add but the business end of things.  Doing all this will make you feel that you have taken care of things and are at peace with yourself and have helped your family.  That makes the passing easier --- my mother did all this and it was a blessing to me -- she even drew a picture of the headstone she wanted and put what she wanted read at her funeral in plastic sleeves so I wouldn't ruin it when I cried --- I have not yet been able to do all this, although I have the legal stuff in place (of course)

Momofsandj
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187666 tn?1331173345
I'd like to add I think it's important to get things in order as you say. That doesn't just mean a will and burial vs. cremation. There are things to do with and for your family. My Mom has been asking my Dad so many questions this past year about everyday items - how to order their medication, how to use the sprinkler system, how to use the DVD player, where's the paperwork for his retirement payments. He just kept saying she didn't need to deal with this right now. Well, "now" is here and he's unable to answer her questions because he's too sick and confused to help. Sure, my husband and I will dig in and try to figure it all out. But my Mom would have been more confident and less worried if she knew how to handle some of these things on her own by now.

I understand he didn't want to face the idea of dying soon. But to help my Mom with some of these things would have been a gift to her.
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408448 tn?1286883821
Enjoy your friends and Ringo.  I don't have a will done either, but most everything else is done.  I am now a member of the Cremation Society of Mid-Illinois.  It is no country club, but they will spare my husband dealing with the details.  Marie
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523728 tn?1264621521
Just came across this post by accident so thought I'd add my 2 cents.
I don't have a will yet, should probably contact me cousin Jeff attorney at law and discuss this.  Guess I just figured everything will go to my spouse and son but don't want them to have any complications.  
My biggest fear is a long, drawn out, wasting away like my dad.  I still have nightmares about him, it's hard to recall the jovial, athletic man he was before cancer.  At the hospital, his doctor asked me if they should give him more morphine even tho it could stop his heart.  Dad and I had discussed deliberate OD and I gave them the go ahead.  I do not feel guilty about it one bit.
My husband knows that I want to donate my body to medical research with cremation to follow.  As far as a send off, since I won't be there it really does not matter to me, it's more for his and my family's benefit so they can do whatever is comfortable for them.  
Now to go about enjoying this lovely July day, 2 of my best friends are coming over and tomorrow I get to go see Ringo Starr at Casino Windsor.
Love,
Sharon

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Avatar universal
What a beautifully-written, thoughtful response.  Thanks for sharing this with us.  Paula
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Avatar universal
I haven't posted for a while because I feel this site is not what it was.
However I must add my support to everything PF-PVD has said.
I too have advanced disease with a poor prognosis and despite 3 different lots of chemo so far, have not had any remission.

I have been seeing a psychologist who specialises in helping cancer patients 'live with an uncertain future'. He is very much in favour of people making plans which are flexible so that they have a range of options varying from what you might want to do if you have a very short life span to what to do if you have a longer one. (After all none of us know into which category we will fall). Keeping these plans in mind he advocates living in the present as much as possible.

Consequently I have already given away jewellery to each of my grandchildren who at under 5 are far too young to realise but it made me feel better that in the future their parents would be able to say 'your grandma left this just for you'.

I have left letters and gifts for my children and my beloved husband. I have planned my funeral - a religious service - and I have chosen the hymns and the readings. Like other posters have said I have a dread of being buried alive so my husband has been told to triple check and to cremate me!

I found lots of very old photos of me and my siblings when I was a child and collated them into photo books which I gave to my children.

All of these activities have made me feel that I still have some control over my life and also that I feel more 'ready' for what is to come. It does not mean that I have in any way 'given up'! I still enjoy life and try hard to do something pleasurable every day.

Kate in the uk

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146692 tn?1314331773
When I was first diagnosed, I was approached by a social worker from the chemo ward about my end of life planning. I at first was shocked that anyone would ask me to plan my death, while I was fighting for my life, but did it anyway. I am absolutely thrilled I did it then. My fight will always go on, but knowing my end is filed away, so others won't have to do it for me? that is precious to me. It is hard for people to understand our reasons for doing this, just as it was hard for me to accept doing it at all. Now I am at peace, knowing I have it finished, and I can go on with living my life to the fullest. I found it to be very helpful to me, as I accepted the ovca for what it is. Knowing my b/f will not have to deal with the hard stuff gave me great joy. Having the time to write down my feelings toward those I love, has given me great a great sense of peace, in knowing I have gotten the opportunity to make sure people will know just how much I have appreciated the little and big things they did for me in my life time. In many ways ovca has taught me to live my life differently, enjoy little things, and see nature a little brighter then before. I now see flowers, sunsets, I hear birds and people laughing, and I feel pain in a whole new light. Not everything about being diagnose with cancer is a bad thing.
God Bless
butterflytc
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41502 tn?1223517053
My father passed unexpectedly in 1984 from an anerysm.My mom and I were home that night it was about 11.30 p.m.. By the time the ambulance and e.r. run were over I don't remember getting any sleep. Visitation was the next night, so we had to pick everything, clothes, funeral arrangements the next morning. It turned out well, but so much stress in a hurry. My mom bought her lot next  dad, and had their marker put up, everything except her death date. She prepaid her funeral and has everything planned as to clothing etc. I bought our lots a few yrs later next to them. Mom is still living. I wanted to pick out my things before I found out I had cancer, about 5 yrs ago. I had borrowed a book from the funeral home to pick out things, and had it at the office. My employess were appauled that I was looking at it, so I ended up taking it back and doing nothing. I wanted to do it for my family so things would be like I wanted plus save them going thru what I did with dad. I still would like to get it done, but haven't felt like it since my recurrence. I personally thought it was a good idea even before I was diagnosed. I want to attempt to get it done soon, but I get the I don't need to worry about it from my family.I will have to catch a good day, I need someone to help me, maybe I can try to talk to my sister again. My mother in law was going to help me but she had a stroke new yrs day and just came home a week ago. She definitely is not able now.
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351724 tn?1267537018
it wasnt to be offensive at all , and im sorry you took it that way ! and its not just having someone dear to me die of it , its also my scare of possabley having it also . so please hun dont take my post like i know everything  because i know i dont . my heart goes out to you and everyone who is diag with some sort of cancer . and no, no one understands  why them ,why it happens to them . i was just basically stating and it wasnt mainly towards you , some ppl give up and as i read u arent one of them . you have a strong will of realizing what is happing here . and to be perfectly honest i really dont know how ill react , no knows how they will really . i just hope u understand i wasnt trying to say you dont have a grip , because from your post you truly do hun . so please again forgive me if i made it sound like you didnt and made it sound like i know everything , because i know i DONT !  and to be perfectly honest i may never know . im young, and yes scared of the possabiltys of what i may be diag with !  and i know we arent alone in this theres alot of good hearted women on this forum and i am one of them hun , i want to be your friend  not  your enemy !!!!!
Helpful - 0
Avatar universal
I'm sorry, but I am offended by your post suggesting that if I think about death I will die.   Or that just by being strong, I can beat stage IV cancer, which somehow gives me full control over this disease, and if I die it will be because of something I did or didn't do.  I wish it were that easy!  If you had read carefully through this entire thread you would have seen this post of mine which shows my state of mind is far from dwelling on death.  I copy it here for you:

"I know some of you are concerned that I am dwelling on this subject and have been kind enough to write me with your concern.  I'd like to share with you the clarification I gave to one kind-hearted soul.

"Thank you for your concern, but I am not having a bad day at all.  It is a glorious, sunny day and I am very happy to be alive.  I went out for coffee this morning at a place where everyone knows my name, and I will walk in the sun this afternoon and talk to my lovely daughter tonight.  On the contrary, I am finding remarkable peace right now in large part due to the fact that I have accepted my future.  That is accepted, not giving up by any means.  I am 5 days out from chemo and feeling better than I have any right to, so how can that be a bad day?  Even my therapist thinks it is good to plan.  Planning does not make things happen after all.  Also, I don't dwell on this--I've made some decisions and I've moved on.  We are all different, and for me I can only find peace when I've made plans.  Making plans allows me to think about a subject and then forget it, and this I've done.  I am most definitely living in today, as I realized months ago that worrying about tomorrow just ruins today and I can't afford that.  I also believe I have many years ahead of me, so these are long-range plans. " Paula "

You may think you understand because you had someone near you die, but it is not the same as someone said "staring at the mack truck that will hit you."  That is why I had asked only those who are in that place this would respond.
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351724 tn?1267537018
OMG please i know how you are feeling , ive watch my grandmother and took care of my grandmother , she had ovairan cancer and it spread and paralized her . she basically gave up on her life and let the cancer take over  her she was 66  , i am dealing with a scare myself i know its not easy but we are all stronger than this , we all have to keep our heads up high and not let this take control . live each day and not look back , keep telling ourselfs im strong and i will be strong , i will NOT let this control my life !! i know u said with those who have actual cancer , but im sry hun i just couldnt just read your post and not reply to it ! you have every right to plan , but keep in mind too that you have to be strong too . and not break down . plus my own opion when u think your gonna die and you keep saying it and thinking it and not having any hope at all that u can actually beat this , is when ppl lose there lifes !!!! trust me ive seen with my grandmother !!!!! she gave up hope and her life i wish i was more mature back then to realise what she was doing to herself but i was just a teenager . i am 31 y/o and look back and i would like to kick myself  but you know what i know she isnt suffering now and i know she is watching over me . but i wish she was still here with me . so we can be strong together ! and not let this rule our life !  i wish you lots of hope and harmony and peace . dont look at it as if its the end of your life look at it to be stronger for yourself  !!!
Helpful - 0
349465 tn?1289081764
Speaking of getting ready for what may happen to me.....I recently placed quite a few of my doll collection on eBay.  Boy did I mess up by listing them too low with no minimum!
Several people got $100 + dolls for $9.99. Live and learn, I guess.  My next time around I am going to be accused of price gauging. LOL I have time, plenty of time.....to wait for the right price! People taking advantage of a po gal with OVCA should be ashamed of themselves. ;)
Teresa
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167426 tn?1254086235
I learned a very hard lesson many years ago. My gramma died when I was 12, she had always followed my Mom and Dad in all their moves  and always sat up her own little house, it was a haven for me, in those last years, my brothers were gone to war, Mom and Dad were busy just trying to pay the bills. My Dad was 1 of 4 children, they never visited or helped out with bills but when Gramma passed they desended like Hawks to fight over her meager belongings.  I stood back in a corner and watched and listened and cried. That was when, at my young age, I vowed that this would never happen again. Since then I have seen variations of the same thing happen when greedy relatives plunder the "collections" of a life. I have told this same story to my children and told them how unhappy I would be if they ever fought over anything of mine that I leave behind. I have been going through some of my "collections" and for the past 2 years, I gave many of those things as Christmas presents.  Of the precious thingsa I have left, I have them listed in a codicil with my will. I add and delete to it frequently. It is very hard  when you reach the time when you know time is short to take care of these things, the smallest thing may be a treasure to you,   but trash to another. Which of my kids would treasure  a "Dance Card"  from my Prom?  That is my memory  not theirs, probably wouldn't even sell on EBay. Taking care of the big things was easy, but all this small stuff takes a hell of a lot of time.  I have always admired the organized person that had a place for everything and made it easy for others. My life has been a clutter of memories, I watched my 3 older brothers gather my Moms memories into boxes to take to the dump.  I stopped them cold, was I being the Greedy one? No, I was being sentimental and trying to hang on to my Mother for just a little longer.  Am I able to do this for my kids, or shall I just send that Dance Card to the dump?  The only thing you can take with you when you die,  are your secrets, but to completely erase all those memories  does not leave a legacy for others that loved you.  So I am leaving hints for them that I lived, loved, laughed and had substanance.  There is still a lot to do, and I am sure I will not finish it all, maybe I will just frame that Dance card and give it to a grandchild to hang in their garage.  Love ya all , marty
,
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272338 tn?1252280404
I guess that this is something many of us just do not like to talk about, yet we just cannot ignore it.
I found out about a year ago that my mom had put back a CD just for me, in case that i should go first. It is to remain in my name even should my mom go first so that nobody will be burdened with the expenses of a funeral. That is something that I had worried about only having one child, and it has eased my mind immensly knowing that all will be taken care of. I also started on a living will about a year ago. As many of you know my better half is in prison and I am hoping that I will still be here when he comes home, but whether I am or not  I wanted everyone to have an idea of what to do with everything. I am a collector of antiques and I wanted everyone to have something if they want. But I especially wanted my grandkids to have some of my things to remember me by. All of this I have specified. What I did was to go and buy a journal and start writing. I have also added a few letters and plan on adding a few more.
  I too hate hearing that "anyone could be hit by a car " ****. Yes they could, but more that likely they won't! We have to face reality at some point and I think that most of us know, that the cancer is what will eventually get us. But I still want to live each day to the fullest. As long as I am still feeling pretty good, I won't worry about it all just yet. It does make me feel better though to know that i have started taking the upperhand. I also intend on planning my funeral and maybe even writing my own obituary. I guess to some this all may sound morbid, but under the circumstances, there is nothing morbid about it at all.
I also started cleaning and clearing out stuff as soon as I felt like it. Why leave it for my family to deal with?
It is good that we talk of this as it is a part of our lives everyday. But a part that we just do not speak of often. And hopefully it is something that will be a long time yet for all of us!
  Love to you all,
  Chris
Helpful - 0
Avatar universal
Hello.. and thankyou for your thoughts re my son.I feel that his loss has probably made me stronger in facing ovca. To me, there is nothing worse than losing a child.
I hope you are doing fine, and all is going well in your little part of the world. Hugs..Helen..
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408448 tn?1286883821
One of my least favorite things is when someone gives me the "anyone could be hit by a car tomorrow!" line. In my case it isn't even true because I am so careful about looking both ways when I cross the street!!

The new thing that keeps coming up is people that warn me about chemo. They say it is poison and does more harm than good. They say they'd never put it in their bodies. I bet the tune would change when faced with a diagnosis like mine!  A dear friend of mine goes to an osteopath in Chicago. He asked his osteopath what I should be doing. The advice was incredible. He said he is not big on chemo and recommends I strengthen my liver by eating beef liver. Oh, if only it were so easy!!

Thanks for "listening",

Marie

Helpful - 0
176401 tn?1339369307
Paula, we have so little control of this cancer, so I think controlling what happens to us during and after life is so appropriate.  
Becky, it really makes me furious that you have to deal with this.  So totally unfair.
Helen, I am so sorry about the passing of your son.  
Kimchi, I regret that you don't get the acknowledgment you deserve from your sister.
Jan, I am totally with you, girl.  The "you could get hit by a bus" analogy is the one thing that drives me mad!!  When I am told that, I suggest the person think about sitting on the freeway tied up seeing a mack truck coming directly at you.  That's what it is like for us.  No comparison at all!

I hear you all talking about peace.  Would you share how you feel peace about what will happen to you when you die?  We talk very little about spiritual things and I don't understand why.
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