A place to talk death and dying issues
This post is for those of us with concerns and issues about death and dying to talk about them.
IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE. We do not need people telling us to live life or to hear that other people have lived a long time, we have concerns. We are living life and would like for our diagnosis/prognosis to be changed. However, we are stuck with it and not in denial.
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I almost don't know where to start. Like many stage IV people, I've had big ups and downs. I had a near death experience about 2 1/2 years ago and I'm probably heading into another one right now. During the first one, I was very sick when I left the hospital but very concerned about my brother and mother - both were very dependent on me.
During the first episode, I was able to help my brother become independent with the help of a community organization. A couple of weeks ago, I was able to put my mother in touch with someone I believe will be a good resource for her - she is 85 but still living in her home in the country. I've been able to set her up with people that help her maintain her home, help with paperwork, etc.
I am so happy that I did the will, health care power of attorney, etc. many years ago and don't have to deal with any of that. I am currently looking into things I want to give my sister and brother now versus later.
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I know what you mean, i feel likei'm always being told, but you have to fight. Unfortunately for every long termer i can probably think of 3 who went from NED in a week or 2. No i am not planning to do that, but i want to be able to tall without feeling akward. Good topic
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Nothing to add except I hope each and every one of you/us finds the information that we need in order to do the things we need to do when we need to do it.
Many Hugs and Blessings
Jean
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I appreciate the post. Though I am not close to dying from this disease yet, I know that one day it is likely I will be (unless I die of something else before). When I have tried to talk with close loved ones or friends they are obviously uncomfortable. I am at peace with the logical conclusion of having cancer. It hasn't stopped me from planning for the future or sent me running into my room to wait to die. I live each day the best I can. I plan for vacations with my DH I look forward to seeing the kids get married, hopefully have grandkids someday, maybe building one more house together. I may not get to see any of this, but it is the hope that gets me through the day
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I have meet one of my goals, I watched my daughter graduate from high school. I would like to see her graduate from college also.
I do have all my final papers in order and it was a stress relief for me and I did not stop living because of it. I know this ugly disease will be my cause of death, but I do like to talk about some concerns, like; will I be comfortable my last days and be able to deal with the pain?
I am lucky enough to have a sister that knows even what jerwlery I want to go to who. We are currently planning a July 4th party, if I am well enough.
Another thought, my daughter's graduation party ended up being a family reniun with people coming in from texas and other places, it made me feel loved and at the same time spooky because they came to see me before I die.
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Thank you for the thread. I am living through yet another death. Since my diagnosis, my son-in-law died at the age of 35 in 2007 from prescription drugs. His children are still grieving. My sister-in-law died in 2008 at the age of 57 of something totally stupid, a perforated colon. If it had burst she might have survived but it slowly leaked. My brother came home and found her dead. Now my brother is dying from lung cancer. He has four to six weeks. I am sure her death has led to his giving up. They had one son and he is freaking out that he will be left alone (he is an only child). My daughters assure him that this not true but I know how things progress and eventually unless he finds a permanent someone he will be alone. Our family is tiny. Two daughters, two grandchildren, and the one cousin. I have BC and my husband has heart problems. I always thought I would be there for them. My mom lived to be 91. How can we avoid talking about death. It surrounds us. I wish there was more on TV; not the cliches, not the we will see each other in heaven, just what ordinary people think and how they cope. Hugs to everyone.
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i hear you imbell, it is hard, i only have a little family too...and thanks ma for this thread. I went through my mother's cancer when i was 13, though she survived it, it was my first meeting with 'death'. I have been through my fathers death, my best friend, the love of my life boyfriend, a close friend, my mother died a few years ago on my daughter's birthday, I have given birth to a still born baby..death is a fact of life..
I do want to be able to talk about things. I wish i had a sister like you ma..i try to tell people what i need to say re even the little things, but they inevitably say"oh dont talk about that, its not going to happen for yrs'..
I know some of my posts have been considered depressing by some, my psychologist wont even let me talk about what is ahead, and i thought that would be one place/space where i could freely talk about my fears, concerns, beliefs, at least for one hour a week!..but i saw she felt uncomfortable, and said i am 'wallowing in it', by coming onto this site, and reading as much as i can on this disease..i was furious, as i believe that however we choose to handle this diagnosis, is our own choice. If reading and talking about it gets me through, then that is what i need to do. My friends change the subject, and say it is good to talk about other things, to take my mind of it. I dont talk to my 13 yr old about it...I feel i am handling it rather well, i still laugh, joke, cook dinner, daydream, listen to the birds, but i am in need of straight forward conversation about the future, my future, life, death. It was an extremely hard 9 months of facing this disease, but i have got there i think, and i am living.
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My decisions now can't be made without thinking of a shortened lifespan. With that in mind, last month I created a firestorm when I insisted my siblings in another state would now have to be responsible for my very difficult 85 year old mother. It was a fight to get even her to agree as she is a completely self absorbed hoarder and not too rational these days. Last week I put her on a plane to assisted living near my brother. He's furious and fairly lazy, he figured he wouldn't have to do this with 3 sisters but it's his turn.
My adopted and mentally disabled son........well I found his birthmother and they have been talking daily by phone and he will be going for a visit this summer for a month. She knows why I'm sending him and understands the plan is for him to eventually move back to her. She is thrilled to have him back in her life. My family rejected him long ago. They are real winners I know.<sigh>
I made the decision to go on SSDI now rather than wait 2 more years for regular SS to be sure that my husband will benefit from the higher amount when I do leave this world.
I'm a bit of a project manager by nature and that is how I have approached this.
Having said that I have no plans to go anywhere, anytime soon. But we make plans, God laughs, isn't that the cliche?
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project manager, thats great chickadee
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Thats-life:
I have a psychologist that I found through my 2nd oncologist (I'm on my 3rd now) and he is a treasure. His expertise is death, dying, and mourning and he has a lot of experience with cancer patients. I have had many good discussions with him about how others accept death and the mourning process that you go through over your own life. I think that you do mourn the things that you are leaving behind, the people, the things you love to do, and the things that you can no longer do. He has been a tremendous support to me especially getting me to understand that none of us can control the time and cause of our death - we never had that control - not 20 years ago - not now..
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Wow, you guys really got me thinking. I have all my paperwork but never filled it out yet. I have been floating down the river of "denile". I have talked about death and dying with my DH. I have even figured out who gets what of my things since I only have boys and they don't want "girlie" figurines/jewelry ect. When I mention these things to other family members, they are appalled that I even suggested "dying" and think I am giving up. which pisses me off to no end. Why am I doing tmt huh? I don't plan on leaving for a long time! I need to make myself do the paperwork while I am coherent (does chemo brain count?)I flet superstitious that if I filled it out I was marking my time. Silly me.I am the procrastinator manager! Dawn
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nurse ann: i was refered to this woman on dx, and as she had alot of experience as an onc nurse for 20 yrs, and involvement in the bc world here in australia, i thought she would be great. But i have had to admit to myself, this week, that i have spent most of our sessions defending myself, defending information i have found here, my fears, my feelings. This is what i am most angry about: my hesitation re chemo in the future (as i have chronic infection isssues) is interpreted by her as a suicidal wish..my participating on this board as 'choosing to be depressed'..my need to look at potential situations in the future i.e. fractures/ mobility as 'wallowing'...far out, her fall back is to tell me i have to start 'living'..or show me stories/videos of women who have lived over ten yrs with this dx. I get that, and i hope im one of them!, but i am processing a devastating dx, and i have realised that how i choose to 'live' with this dx, is my way of coping, and individual, and if it works for me, then i will keep doing it..someone else's version of 'living' may not be mine. ( early into my stage IV dx i was told by one 'expert' in this field to take up knitting, well, um, maybe not right now, thanks anyway..lol) Thanks for the comparison...i am going to see my GP, and ask if there is someone local, who specialises in death, dying, mourning, as you said, thanks
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China:
One reason to do the health care power of attorney and your final "physical" wishes is that these documents can get very scary and detailed like when they should give or withhold water, food, etc. I hate to be so graphic but I am so glad my husband and I did these 10 years ago and I don't have to deal with this now with everything else. I think it's good to get this stuff out of the way and into your desk drawer.
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Hi Chickadee,
I am not in your situation, but I have a question. I was diagnosed with the same as yours. Except I never got a response by doctors as to the HER2 dx. How many lymph nodes were dissected for you. Positive or negative?
Thanks.
Mary Grace.
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I like this thread. I am not a forward thinker and never plan. I had no life insurance. Well, my company switched life insurance companies and a one-time offer was made for everybody to get life insurance, no questions asked. Needless to say, I jumped on the offer and bought the max. Now, at the time I was stage II and had high hopes for full recovery and a few times I've looked at that money coming out of my check and wondered why I bothered.
Now, I'm so glad I did. My family will get an extra $100,000k upon my death, and that will help pay for my son's college if it's within the average range.
I have no idea what else I need to do to plan. I really need to get rid of "stuff" - I'm not a hoarder like Chick's mom, but I like clothes and all my closets are full, and I guess I should pare some of that down. As far as other planning goes - it's hard to know. I hope to work quite a while longer - it's all kind of up in the air right now.
What other financial things are necessary? When people say they get their affairs in order, I always assumed that meant they had a fling with Brad Pitt.
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HAHAHAHA, Coolbreeze. Thanks for the laugh! I like your thinking.....Brad Pitt sounds much more fun than doing a will!
I have two young kids, and I have done so many things for them.....scrap books, a CD with my favorite songs, projects, gifts, letters, journals. They each have cards for every birthday until age 21 and every major event I could think of. etc. I have done video messages. I have bought books and writtien notes in them. They each have a box full of stuff. There are other unfinished projects I am still completing. I am a bit obsessed.
I am going to make them not only "remember" me but also know how much I loved them. I feel better having done all of these things.
Lori
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Wow, Lori, you are so organized. I love to scrapbook - I have completed exactly ONE for my family, and that was 15 years ago.
I've done others for others as gifts over the years, but not for us. I would love to finish/star these books but I don't know how I'll have the time or energy. Maybe I'll feel better when my new chemo starts but right now, I got to work, come home and go to sleep. My husband woke me for dinner and we watch TV and then bed.I need to do more of this stuff, but it's hard when you have a job.
Im such a control freak I want to leave notes to my husband: don't forget to not gulp when you drink your coffee, make sure you wipe the sink. LOL.
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Hi ladies,
I really have no problems talking about this stuff and never did really. I have done very well so far but I know, as does my family, that I could take a turn for the worst and be gone in a very short period of time. I do just live my life each day and try to leave good in my path. This may sound cliche but I really want the funeral home packed with those who love me. When people talk about me after I'm gone, I want them to laugh at the fun we had and be grateful when times were bad and I was there for them. I want to be remembered much like my grandma who's great great great grandkids still hear about her as if she is still alive. I want that...to be remembered as someone who made a difference.HUgs, Mazy
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Oh by the way, I do have a will etc. My kids and hubby all know my wishes and wont cause a fuss about anything. I told them if they do I will come back and haunt them LOL.
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I used to work in a law office so my will, power of attorney, and advance directive was drawn up when I was diagnosed. I had a family member's name put on my checking and saving's account. Now I'm working on paying for my cremation and planning the service with my friend who is more than willing to do this. She lost her husband to cancer about a year ago. I also will be making a list of specific items being left to friends and family and writing some letters to leave behind for family members.
I quit work and cashed out my life insurance to pay for continuing insurance coverage. I really enjoyed my job but found the drive and half days brought on more pain than I could handle without pain pills. That was hard for me. Slowly I have given up marathon walking, working, throwing dinner parties, and anything else that I have not enough energy doing. I keep telling my mom I totally know how older people feel when they can't do what they used to do. At first I fight it then I get to acceptance. What other choice is there?
Hardest thing for me is when someone says we are all dying. Yes we are but don't you think it's much harder when diagnosed with a terminal illness? Like you can forget about it when you are in chemo for life. I'm just saying....0 -
Fighten,
And the fact that we have so many side effects and aches and pains from cancer. Some people just dont get it. Cancer ages us. I know I sound like my Mom with all my aches and pains and complaints. I'm only 52 but physically I'm sure its about 70 LOL. Mentally I am 27 tho LOL. HUgs, Mazy
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Imbell, How awful, I am sorry sorry there has been so much death in your family.I will pray for you often. Hopefuly the one son that is still with us is seeking, or already has, a psycholigist!
That;s life,
I am lucky to have the sister I have. You are living for sure. You have also had more than your share of death in the family, so sorry. It is part of the life cycle, but that doesn't mean we like it. I think that when there is a lot of death in one's family it makes us more aware of what we do not want to happen and also aware of the grieving the family and friends will go through with us passing on. I have a now 17 year old and do not want her to have to make any descisions for me, so everythign is in writing and I even planned my own funeral. As hard as it was, I am glad I did it. I even picked out the sign book and cards. I don't have a husband to do it for me.
Consider changing psycologists! We all need a place to talk about death and dying so we can get de-stressed to live! I also think that with the dxs we have antidepressants should just come with it and we shouldn't have to ask.
I just read a new study that treating depression help stage IV breast cancer patients live longer and had a better quality of life. Oh let's talk away.
I like your, we control our destiny. So many times people think we can. I hate that!!!! Like I have any control, hello.
Chich a dee,
You are so well organized, my respect to you.
China, It is very hard when people think we are giving up just because we want to organize things, it is usually even for the peole that unintentional know us down.
Things I need to do yet- fling with Brad Pit, letters or videos for my daughter.
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Ya know, one thing I hate is when peole knock me for my decsions. Like, no more harsh chemo. Do they really think that is living? Not being able to walk, eat and going to the er for fluids is not living. When treatment is a thing for the rest of your life, what is you definition of living?
Mine includes being able to drive, hug my dayghter, walking, eating, etc.
I went with a vaccine trail instead of the tradional chemo. I had the TCH and hated it. It was hell for my daughter to see my so sick.
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I am very new to stage IV but I am going to start a memory box for my family, I am going to fill it with letters, photos, stories about our family and all the documents I have gathered when doing our family tree over the last 10 years.
I need to do all the practical things like wills and eastate planning. Where to start I have no idea.
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Lori, you are my hero! I have been saying that I would do those thing for 2 years now. I really am going to start it this summer. I love that ma11 started this thread. I really have no one to talk to about these issues. My husband has had panic attacks since my diagnosis and my sister pretends nothing is wrong. I think she will be the one to fall apart the most when I am gone. My in-laws are in full cheerleading mode, which I love. But it doesn't allow for much reality at times. My mother died from cancer herself and my father just plain and simply cannot handle hearing any discussion of death. This is a very lonely disease and I thank God for you women. We are all so strong even if we don't always feel that way.
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Two years ago I made attempts to get my life in order. I have yet to complete my will. My diagnosis, although it has a good prognosis, is the incentive to finish it. If there is one thing my experience has taught me, it's that nothing is a given, even from the beginning I went from DCIS, to IDC after surgery. I think planning for the future is a responsible decision, and I feel for anyone that get's the brush off when they are attempting to do these "hard" things in life. I'm not yet married, and I got the brush off yesterday...funny that this post showed itself to me this morning. The finanical guru's have a lot of advice on planning and completing wills. I think Suze Orman even sells a kit (which is not necessary) I liked Dave Ramsey the best of common sense type planning. There's also all kinds of software that is cheap, like Will Power. There are all kinds of state regulations, but I think purchasing a software with state specific guidelines, and then a consult with an estate planner after you complete everything would be the cheapest way to do it. I would think the American Cancer Society would have some info available too. I've only had life insurance through work, and was laid off before my dx, so now I squirrel away money for the inevitable. It's a secret so far, but I feel like it gives me some control. Of course that's all just the business of the end of life. As for the emotional part, pictures have the most weight for me. I'll never be a scrapbooker, but I've been trying to capture images of those I love, although I'm not in any of the pictures, I'm hoping that the images I make will evidence the love that I feel for those around me.
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I have a hard time getting anyone to talk to me about my passing and what I want. I've just gotten NED results and believe me, I do appreciate this time and will enjoy it. But I am not a fool, not pessimistic; just pragmatic. I know this time is likely to be brief. I am Her2+++ with IBC. This generally translates in to "screwed". SInce I'm on Herceptin, brain mets will probably be the culprit, and they will grow very, very fast.
The problem is that since my results are all sunshine and lollipops right now, no one wants to hear that I am essentially and always will be still sick - any mets will grow very fast. That sword of Damocles isn't going to go away. I am in a golden era right now where I know how easily my life will slip away, but have been given a reprieve. But if I get brain mets, it will probably be a fast decline and who knows what part of the brain it will attack? By the time people are ready to listen I might not have the faculties to talk.
Sorry. Feeling down and in pain today.
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(((((((PaminWV)))))))))
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I think it's a wierd place to be. I have terminal cancer. I'm perfectly healthy and active. I don't look like I'm dying, and for all we know, I'll outlive them all. But I have to face reality that with this disease things can change quickly. I got a taste of that when I went from normal TM to 300 point gain in 3 months which led to the discovery of mets to nearly every thoracic vertabra. OK. So I can deal with that, but it's sure a wake up call to get my affairs in order. You all may know all of this, but I'll post it here for your consideration. (I have to know my affairs are in order to stay sane, I HAVE to have a plan)
I work full time and carry the health insurance on hubby and I. I've called two insurance companies. Because Hubby is self employed he can get group insurance. It is pricey, but do able. With a group policy I can be added when the time comes. It is more cost effective for us to stay on my employer's policy as long as possible, then get hubby a group policy of his own. Only when I must quit work and file for SSDI will I join his group policy. That will cover me for the two years until I qualify for Medicare. It's all kind of expensive, but it's doable.
The group plan I prefer is a $2500 HSA. The first $2500 is out of pocket. After I have paid all expenses, including drugs, up to $2500 the insurance pays 100% of all costs after that. It is recommended you have at least $2500 in an HSA account, but it not required. I really like this because it caps my out of pocket expenses. No more $40 OV co-pay, no more script expense, just pay the monthly premium and whatever cost I encure over the year up to $2500. On a good year that could very little, on a regular year I could max out. I like this cost contaiment feature.
I have two life insurance policies, one through work and one is a 30 year level term. When I file for SSDI I will also file for advance benefits on my life ins. The 30yrLT will "lend" me up to 50% of the policy. The balance will pay my burial expenses. The policy through work will allow me to cash out 100%. This money will help cover the loss of my income and the cott of the insurance premiums.
I just can't bring myself to do it just yet, but if my prognosis changes I'll consolidate all my accounts with my husbands. I love him, I trust him, but there is just that little bit of me that really likes my complete financial independence.
Because I live in Kansas with no heirs I don't really need a will. I actually own nothing but half a car, and half a truck and have no outstanding debts. Hubby will automatically accquire all my worldly possessions. I'm sure he'll look good in a size 12 dress! *LOL*
I have a living will.
I have a folder started with my favorite psalms and such for my funeral.
So far I haven't come up with any more ideas. I think I've covered most of the bases.
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Thanks, ((((Kezzie))))). I sure do appreciate the virtual hug. One of those days!
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