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

[katems]

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

[butterflytc]

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

[msjazz]

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.

[2Young4This31]

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 !!!!!

[PF_PVD]

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.

[2Young4This31]

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  !!!