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

[Kimchi]

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.  

[Steve H]

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

[Jan214]

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.

[Mary 53]

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

[Tybear]

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

[marie3B]

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