End-of-Life Planning?

[PF_PVD]

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

[Jan214]

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.

[aligator79]

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.

[Jan214]

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

[PF_PVD]

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

[marie3B]

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

[Jan214]

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