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End-of-Life Planning?
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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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45 Comments
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I want to add something, and that is that my therapist is the only person I have discussed this with at this time, as it's too soon for anyone else to handle.  She thinks it's quite healthy to do this thinking/planning now.
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I know you are not looking for opinions from those without cancer, but one thing (if I can recommend) is maybe making a journal or book about your life.  Now that my mom has passed, I'm finding it hard to remember all her life stories...it's something that I would have treasured.
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I have lost a couple of friends to this disease.  Last year a dear friend was experiencing some ill effects from her recurrence, it had been about 4 years since her initial diagnosis and never truly went into remission....she too got to the point where she was able to accept the fact that the cancer has taken over and she would lose the battle to this disease.  In one of the last conversations I had with her, she told me that she had made peace and accepted the fact that the cancer would win.  She told me that she made peace with those around her that she did have some "issues" with.  She was at home until hospice care kicked in and she went to a "hospice".  She was treated like a queen until the end.  Towards the end, she was very sick, the pain was controlled.
Planning can be healthy.  When I was in therapy, right after my diagnosis, one of the things the therapist had us do was write our own obituaries.  
In the meanwhile, no one knows how much time we have left, live life and enjoy while you can.
All the best to you and your family,
Pam
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Oh Paula, no you are not weird.  I can't say I think about it all of the time, but yes I do think about it a lot.  It is in the back of my mind with almost everything I do. Last year I was so sick from the Gemzar that it took me forever to get the christmas decorations put away.  The other reason it took so long is because I had to sort them.  Some of you know that I just got married last August and even though we have been together 5 yrs we did not live together, but we have been buying stuff for "our" tree and home decorations.  I had to sort the stuff according to where it goes when I die, because Cory wouldn't know the difference between our stuff, his kids stuff, my kids stuff, the stuff I had before but we use on his tree etc.  I had to box and label everything so it would be easy for him.  I am also going through all my boxes of papers and pictures and making sure everything there is straight for my two girls.  

I have also made a list of everyone that Cory has to tell when I die.  There are so many people that I didn't even realize who would be sad and want to know if anything happened to me.  The nice ladies at the library, the guy at Quest who takes my blood every week and calls me if I haven't been there for a month or so etc.  There are just so many people whose lives we touch and sometimes we don't even know how much.

The funeral stuff is done and paid for. I too do not believe in wasting good real estate, plus I have an unhealthy fear of not really being dead and being buried alive.  At least with cremation, if I am still alive it will only last a second.  I will have a religious service, but I expect my friends to sit around and get drunk and tell funny stories about me while listening to John Prine's song, "Please Don't Bury Me".  It is hilarious and I have always wanted it played at my funeral.  Alright, not in church.  "Please don't bury me down in the cold cold ground. I'd rather have em cut me up and pass me all around, throw my brain in a hurricane and the blind can have my eyes, and the deaf can take both of my ears if they don't mind the size.....Send my mouth way down south and kiss my a&& goodbye."  You should look up the lyrics or listen to it on Rhapsody.  (A free music site)

I am writing letters to people for after I die.  There are just things that you want to make sure are said.  He also knows to come on here and let you all know.  I have left a letter to the forum that he will post after I am gone.  Actually, if I get some warning before I go, I would like you all to do a memorial service for me before I am actually dead.  Hey, I want to hear all the great stuff you guys will say about me after I am gone before I am gone.

I have a spreadsheet for my gardens so that Cory will have some idea of how to keep all my plants going.  I hate the thought of that more than anything else.  I have put so much sweat into my gardens that I want them to not die with me.  I don't want to die at the hospital and I have made friends & Cory promise me that they will drag my butt back to my yard, because I want to die in my garden not in some stinking hospital.

I hope you all will allow Cory to come on here for support when I am not here.  Which is why you who have emailed me can't leave, he will need you. We have a ton of friends, but i think this is where he would get the most support.   As a side note, please make sure your loved ones know about this site and that if anything happens to any of you with cancer we would want them to be able to get on the site and tell us about it.

Paula, thank you for having the guts to post what all of us with cancer think about but as you said never talk about.  I feel so much better now.  I have never been afraid of death, but I am not ready for it yet and I am feeling like fighting a whole bunch more now that I haven't had poison dumped into my body every week for a while.  

Be good to you Paula.
Love,
Jan
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You and I think alike. I have been planning to have things ready and have been working towards that goal since diagnosis. My form of cancer does not give me a great statistical chance and even though I plan to defy the stats I also refuse to leave my family unprepared. When I speak of such things with family and friends as carefully as I can they say I am just not thinking positive or that I am being morbid. That is not true. I am positive that I will fight hard until the end, whenever the end comes. But when the end does come I want things to be already in place.

I know I do not want to be buried. It is expensive and I also am a little freaked out about the whole underground thing. I guess I have seen too many scary movies. I also don't want a funeral. The amount that that would have cost I want to be donated to research to help prevent others from following the ovca footsteps.

Like you, I don't want to die at home, at least I don't think so right now. I have not looked into Hospice centers, but the oncology floor at OSF is great and when the time comes I may go there. I have been a nursing assistant for years and I don't want my family to have to care for my physical needs at that time.

My mother dealt with her ovca from the hospital. She was so strong and never once seemed to feel sorry for herself. She made her wishes known to me and I carried them out. I am not as strong as she was and I have a few times given in to self pity. Those times are rare, but they do happen. I am normally very happy with my life. I am thankful for so much.

I also agree that knowing what will take us does give somewhat of a feeling of control. Even though this is the most serious possible subject, you were able to bring a smile to my face with the droopy breast scenario... I don't think my breasts would be too nice in old age either. They are fairly disgusting already.

I am not sad for myself either. I am helping my family to deal with it now and to help them pull closer together. I have been the head of the family because I have sort of a control thing going, but I am turning things over to my husband and girls a little at a time.

Alan, you do qualify to answer in my opinion. Watching my mom deal with cancer was much more difficult for me than dealing with my own.

Although I hate this cancer with a passion, I have received some unexpected benefits from having it. Those benefits include meeting some wonderful people on this forum. I love you all and I thank you for being beside me in this.

Very Sincerely,
Marie



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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
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Paula, I to have gotten a few emails about this post already and you were right to ask those without cancer to not post.  (Always love hearing from you though Alan & we know that you know.)  They don't get it.  It is a beautiful day here, I am going to go out and plant my lettuce bed and have a great dinner ready for Cory and remind him that we are still newlyweds.  I am not going anywhere right now, but to know that everything is taken care of and that my family won't have to go through my stuff wondering what to do with it, or plan a funeral is a great relief to me and I can enjoy my life MORE knowing these things are taken care of.  For those of you that are worried, please don't be.  I am not being morbid and I am not planning on dying today.  Please don't take this the wrong way, but no matter what you think, if you are not facing the possibility of death with this monster than you can't possibly know what it is like to deal with it and not be unhappy. As with Paula, my minister does not think I am morbid, just doing my usual type A personality, control freak thing.  Honestly, I feel good and i am smiling for the first time in months.   Thanks for your concern, but you are going to have to find some way to make yourself understand that you don't understand and that's okay.  I hope you never do!!!!!
Jan
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There is nothing more helpful to your family than to have you wishes written down and made known.  This is a fantastic idea for anyone, not just those that are sick.  My aunt and uncle have had thier arrangements made for 20 years and when my aunt had a stroke and slipped away- he knew exactly what she wanted and was totally okay with it- the rest of us (his family) 1000 miles away weren't as okay with it but he described it as a soothing balm on a painful wound- it helped.  My sister and I have been trying to get our parents to at least write a will- we know nothing about thier wishes.  When we brought it up to them, mom thought it was a good idea and dad shocked us all.  He had been adament years ago about not being cremated- not sure why- now he said- cremate me- it's cheaper.  With 7 of us siblings- we need thier wishes.  It's not morbid or having a bad day- it's being incredibly smart and thinking of your loved ones too.- just my $.02.
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By the way, if anyone else tells me that they could get hit by a car and be dead and that none of us knows when we will die, I will find you and I will hurt you.  Do people even realize how DUMB that sounds to someone in my position.  Okay, so I could die of OvCa tomorrow AND I could also get hit by a car you idiot and yes you know who I am talking to.
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When my wife Violet died in Jan this year, we as the family always felt that she would somehow beat the odds, she obviously felt the same, but 'just in case' and without telling anyone, made sure all was prepared, when I went lookiung for documents, ie wedding certificates, she had penciled notes, rememeber this, take that, she wanted to return home to the UK for cremation, we had discussed all, but just in case she had prepared all documents including packing lists, had us feel she was still looking over us. It helped so, I feel this is important, discuss all, she wished to be brought home after, but also to use some of her ashes to be converted to 3 diamonds through lifegem, this process has already started. Steve
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It is certainly good to hear both your perspective from "the other side."  My greatest wish is that I am doing this planning for nothing, but if not, then spare my family as much as possible.  As you and others have said, this can be done quietly and discreetly.  Paula
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I am also doing some planning.. When I was 12 years old my Grandpa bought me my first pair of high heels and I will never forget that. 45 years later the thrill is still there thinking of that day.. he passed away one year later.  

When I was home to Vegas 3 weeks ago I took my 11 year old granddaughter and we had her ears pierced.. her word... "Grandma I will never forget this day" and I am sure she won't ... my daughter had been against it but said okay do it Mom...

My grandson her brother turned 16 Monday.. When he gets his drivers license his car insurance is paid for 2 years...His brother who is 6 wanted a fancy steak dinner when I was there... we went out to the best and people gawked as I paid $29.00 for his steak and watched him eat the whole thing..

In June I am surprising my other granddaughter as she is singing a solo for her school.. Its an operatic aria...

I have accepted that I am going to die.. way before I would like to... I was told recently to stop living in the past and stop constantly thinking of the future.. so I leave you all with this thought and I hope it doesn't offend anyone..
"If you live with one foot in the past and the other in the future you are pissing on today"Just try to remember to leave your footprint on those you love.... Ronni
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You have done wonderful things for those children. I also agree with your thought for the day.................Marie
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Hi ladies...Being dx Stage 4 in  Feb'04.... well I wonder how much more time I have too, although I don't dwell on that thought. When our  27y.o. son passed away unexpectedly, we arranged for some extra space in his cemetery plot for my hubby and I, but since then hubby has left the nest, so it's only me, that will eventually go there. I didn't have cancer at the time, so no other arrangements have been made since. I have asked my Oncol. to give me about 3 months 'notice' when my wind down time is approaching, and he has agreed to that, as they know how one is doing. That will give me more than sufficient time to arrange the details so until I get the  scarey nod from my Oncol. *laugh*... I don't/won't think of my demise at all. While I'm feeling well, and enjoying life I don't want to mess it up with thoughts of drying and death. Time for that when one needs to think about it, and I guess there will be heaps of time when I'm bedridden and can't get out to do anything much physically.  I guess it's like this cancer, the drugs etc.... we are all different in how we handle a situation. This is how I handle mine.
Wishing everyone a great day, and hoping it's a happy one....hugs..Helen...
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Helen, I certainly respect your decision not to think about dying and death, but my point is if I wait until I'm in hospice, I may not be able or willing to deal with these important issues, and I will feel I no longer have any control over the remaining life I have.  Like I said, I feel so much better having already made these decisions, so I can now forget about them and enjoy each and every today.  Paula
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Talking about this out in the open actually made me feel much better. I did more today than I usaually am able to do. I thought of Jan while I took care of my favorite plants.I even took a few pictures to post tonight. I don't have a cool hat garden, but I just love my bleeding hearts and even the wild violets. I enjoyed spending some of my day with all of you. Love, Marie
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One of the hardest things I've EVER had to do was, at 28 years old, make up my will. I remember saying to someone that everyone should have a will but I don't know anyone my age who does. To have to make a will BECAUSE you have cancer? It's like having a gun to your back...however, I can tell you that I am at a strange peace now and so happy I bit the bullet and did it. I arranged my power of attorney, power of health and gave my wishes with respect to what happens to my (now) 5 year old son. What a load of stress off my back. I often wonder about planning my funeral, but I suppose I will wait to get that discouraged " we don't know what to do anymore" look from my doctors. I have also began a scrapbook for my son called "Mommy and Me". It's just pictures of him and me, and I write a little blurb about what was going on in the photo, why I loved it and how happy I am to have him as my son. I've also started journaling, not every night, but often, as I want to leave something behind for my family to read. My biggest fear is dying while my son is young and him not remembering me. I'm doing what I can to preserve those memories....
Thanks for starting this post Paula. I think it's very healthy to talk about stuff like this, if you  want to, of course!
Becky
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Like Becky, I, too, felt peace after thoroughly updating my will. The day before my surgery (back in 2000), I was in a class studying for my Master's degree not knowing whether or not I would ever finish it, when my husband came to pick me up and we drove to an attorney's office. Luckily the people at the office are good friends of ours, even though that made the process a bit sad for me, but helpful in a way, too. Of course, at this point, I was avoiding thinking about the prep I had to do when I got home! Katie was 15 at the time going through Adolescent angst anyway, so I was busy doing my best to remain calm so that I could help her deal with the unknown as best I could, as I tried to deal with it myself.

I know this is a different take on this post, but I can relate to some of the thoughts some of you may be having. And, I totally respect that everyone is going to handle things a bit differently from the next person. I am a planner, too, Paula, and so I know what you mean about feeling empowered and I think my actions before my surgery helped me maintain some peacefulness since there was no way of knowing if more malignant cells were to be found after my ovarian cyst was drained a few weeks before the big surgery.  Anyway, I appreciated your post and I just wanted to let you know that.

Sincerely, Mary
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I just know that I feel way more at peace knowing that I am taking care of all that I can now.  I know me and when it gets that time I don't want to be wasting it by frantically trying to do stuff that I am to tired or to dying to do.  I don't dwell on it by any means and I really don't think about the dying part, just that it is good to have your ducks in a row.  You never know.    
Helen you know how much I admire you and I respect your decisions now as always.  I am glad you have handled this subject in a manner that you know to be best for you.  We are all different in how we want things and apparently you don't have any papers or pictures that you wouldn't want seen.  LOL  That's the only reason I am going through my stuff.  There are just things my kids do not need to know even after I am gone and there are things I do want them to know that I haven't said, so the letters will have to do if I don't make it to grandkids.  I have papers that are in a sealed envelope and they go to a friend who I trust to not let his curiosity get the better of him and he will burn them.  No, I don't trust Cory to do that.  


Becky, it breaks my heart that you have had to go through this with him being so young.  I am glad you have found some measure of peace by  planning and now you can just enjoy each day with him.   I pray for you all of the time and for him.  I know what it would be like for him.  

As I said to someone else, fear is such a sneaky thief and by planning this stuff I don't feel as afraid as I did and i don't feel as paralyzed by all the many fears that go with having cancer in general, & not just the dying part. Now if I could just plan to not be in pain, not have cancer, not worry my family, not become somebody I don't even recognize anymore.  Has anyone gotten through this mess without some significantly profound changes?
Well that's my late night musings.
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Hi, on a special note, what my wife Violet, has done, is as we go through her personal things, things that we normally would not touch, she has left us little personal messages, like my son, he always used to 'rib' (jest) her on her organisation of her clothes, she left a small present of 7 socks, each had the day of the week on, inside she had placed a small note, although it made us cry at first, now we have  a laugh about it, also she left notes like a journal on the computer, and personal messages on a dictaphone, we thank her for this as makes life just a little better
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Good subject!!! When I was told that I had stage 4 and 1-5 years to live, I had no problem accepting this news.  I immediately started to plan for my death and started to write down information about my finances, credit cards, passwords for internet accounts and funeral arrangements. Started to clear out things, had a mini garage sale 2 weeks ago and sold off stuff I did not want.  Have also decided to part with my collection  of old Thai style teak furniture I have accumulated as I don't see mysefl buying my dream condo and furnishing it in the near furture.  I am sad to part with them but they are only materialistic items and if I beat this disease, i have decided to go with rattan (lighter and more confortable) furniture instead!!!
What I have found is that my sister thinks that this 1-5 years is all nonsense and that I should not plan my life around it...she says I could get hit by a car tomorow and die from that!! Well either she is in denial or she knows something that my doctor or I don't!! Told her that statistics show this and it's reality for me, so I shouldn't ignore it. I  call this period "getting my house in order" and I will feel relieved that it's all taken care of.
I feel lucky in a way to have a time frame to work within and I look at it is as if I were wrapping up the first part of my life and preparing for the next.  I am looking forward to seeing what will happen in part two of Kimchi's life.  
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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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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

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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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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
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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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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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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  !!!
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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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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 !!!!!
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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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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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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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What a beautifully-written, thoughtful response.  Thanks for sharing this with us.  Paula
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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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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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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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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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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.


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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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  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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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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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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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
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Thanks for sharing your mom's story.
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