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.
Comments
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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.... -
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.
Susan -
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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1st off- i love this post! I am not near the end yet but like many of y'all said you know its looming ahead. I have so many thoughts and fears about dying so this post is truly a blessing for me to read. (i never talk to anyone about it so i dont sound morbid or something)
Imbell- that is pretty crappy. Even if you had a larger family that is a lot of death in a realativly short time. I agree there isnt enough out there on tv for us to gain from. mostly the feel good stuff...
Ma111- i am going back home to visit and want to do a huge bbq/party because a lot of these people i havent seen in 10+ years, but i am afraid its going to turn into one of those "lets see her before she passes" type of thing... Is it wrong for me to start lying and tell people i am "all better?"
I have been putting off talking ewith my dr about putting me on an anti depression med- but i am def going to ask on my next appointment which is monday- i just feel that i cant handle the depression myself... i dont want to do anything, i look at my dishes and it make me more depressed!
thats-life- i get that a lot too "oh dont say that, you'll be around for YEARS" I want to talk and work through my feelings! I think its too hard on our loved ones to even think about it let alone say it outloud. Take up knitting LOL thats too funny!
Chickadee- Sounds like you're related to me! I have a lot of "winners" in my family too! Good for you to stand up and send your mother off to your brother- i cant beleive that no one in your family offered to take care of her knowing what you're going through!
Coolbreeze- LOL i wanna get my affairs in order if it means Brad Pitt LOL- thats my thing too i need to get rid of stuff- like why i am i holding on to a lot of this stuff!!!!
Lori- i do write in a journal 1 for the kids and one for my husband. i have thought about the video messages but somehow i cant bring myself to do it. I think to myself that NOW is the right time- i am health(ier) my hair is grown in and i look good (dark circles under my eyes have gone) so if i am gonna do a message it would be now, but thats as far as i get.... When did you write the birthday cards? Right at you dx or more recently?
FightingF8- OOOOh that boils my blood! Of course we are all dying and i hate when people say that, i wanna say to them "i wasnt aware that you have diblitating joint pain too!" (or something else that i am going through at that moment) Because our dying comes with so much more than someone AGING (not dying!)
Kezzie- that sounds good- i may have to do a memory box... or maybe memory videos (like telling my fav memories on tape)
Pam i get that too- my last scans showed stable and so everyone is like "well thats it!" no sorry that not it, i will still have to do treatment to keep them stable and God forbid there is any progression! BTW happpy to here youre NED- question about your comment since you're on hercepitn brain mets wil lbe the culprit- explain LOL i am on herceptin too does that mean brain mets are more common for those on herceptin?
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Chele- thats a funny image your husband in your dress LOL
I like your idea about putting together your favorite psalms for your funeral. I really am going to do a video sometime to be played after i die.... i am going to use pictures set to music, honestly i want to do it A- so they dont put in some crappy pic of me looking all gross LOL and B- it will be too hard on my husband to do something like that....
Okay this is so funny i thought i'd share. My daughter got me a card for my bday that was shaped like a pickle, on the inside it said "Bet you didnt expect to get a paper pickle for your birthday" I want to get some made that say "Bet you didnt expect to get a paper pickle at my wake" And i want to sign all of them... Leave the other side blank so they can add after i pass all the information. Reason being is i got that card when i was going through chemo and it was towards the end and i felt so crappy but when i opened the card and read it i laughed the biggest i had since my dx and it was one of those laughs that i just couldnt stop LOL you know where your whole abdomin hurts from laughing! Of course people are going to cry when i die but i want them to LAUGH! to remember my funny side...
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Thank you for this thread.
I'm much like Pam in my status - Stage IIIc with TN that was chemo resistant by the end of my therapy. I still have a positive node that we are treating, and while I am currently NED everywhere else, I am realistic and so is my doctor. We are just trying to buy time.
I'm really trying to get my DH to talk about my death and its consequences, and it is hard. He travels for a living and LOVES his job. I stay at home with the kids. We don't have any family where we live. He is freaking out a bit about the idea that he will have to change his career and stop traveling, and he is terrified of being a single father. So he just doesn't talk about it much.
My mom, who is staying with us, also won't really talk much with me about it, my wishes for a funeral, things I want to accomplish before I die, the bucket list car I just bought...she just can't cope well with the thought of losing her daughter, and will only focus on me living until told otherwise.
I feel like I'm walking a knife's edge, in between life and death. I have no real reason to be hopeful that I will beat this, except so far I am, but I can't start planning for a different fight because I'm not there yet.
I don't have any answers, but it is good to read everyone's response. Thank you.
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Well Timothea, the deal with Herceptin is that it doesn't cross the blood-brain barrier. So it could be working great on your body from the neck down, but you could (and many do) still get brain mets, even after complete pathological response.
But! I have two strikes against me that lower my chances far more than most people. The first is IBC, which you will always see quoted as "the most frequently fatal and most aggressive form of breast cancer". This is because it moves so fast that you can get a recurrance while in rads, while in chemo, or literally weeks after a complete response.
The other is my Her2Neu status - my cancer cells are far more positive for Her2 Neu overexpression than are most people. Which is great in theory with Herceptin, but not so great about the brain...
So, I guess what I'm saying is that you should get scans periodically, but I don't mean to scare you and say "everyone who takes herceptin will get brain mets" at all. It's just not the case.
Like a lot of us, I'm just hoping to buy time for the Next Big Thing in cancer treatment. Normally I'm pretty hopeful about it all, but every now and again I have to bring my head down from the clouds and face icky reality.
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Timothea- I started all my projects which include to all my close family/friends and my husband when I was diagnosed stage IV in 2009. I had all the kids birthday, confirmation, wedding, baby, etc cards done the first few months after my diagnosis. I would sit in my room and do a few at a time when I had a chance. The younger birthdays don't say a lot, but I love you, you are amazing, etc. With the older birthday cards, graduations, weddings the messages got longer and deeper. it was not an easy task. I cried a lot!
Susan, haha, thanks.
Another thing I did which was important to me because my kids are SO YOUNG.....I went to Tiffany's and bought them each a special gift.....both crosses which I had engraved to be given to them when my husband thinks it is appropriate....teens or so since they are not exactly inexpensive. I just hope my husband doesn't forget to give the gifts!
I have what I can an "instruction manual" for my husband when I kick it. It has i with different subjects of things i do now or wish him to do in the future. I am such a flippin control freak!
I was a "weak" stage IV from the start but knew I would eventually have big preogression which I did this past February/March. It was nice that a lot of my projects were done, but I am still working on more. I think of or find new things to do all the time. My kids are going to be sick of me even when I am not here! haha!
One thing I have not done is address what I want done at a funeral/memorial, etc. I have faced a lot, but that is a topic I just don't want to think about. I feel bas as I should make it easier on my family, but I just can't do it.
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PaminWV,
Your complete pathological response actually gives you a really good chance of staying NED for a long time, if not forever. I know how you feel, don't get me wrong, but you had the best response possible for an IBCer. Don't jump to giving yourself brain mets just yet. That being said I understand youir worries. I would go by the motto "expect the worst but hope for the best" and enjoy LIFE!!!
Hugs,
Lori
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I'm intruding in your group to post this cautionary tale: an acquaintance of mine, a lovely man, died of cancer last year. He had a particularly aggressive type, and despite chemo and rads he succumbed in little over a year. He did almost no preparation. I don't know if they were hoping for a miracle or what; I do know his family kept him in fight mode. His wife, especially, was a wreck over his diagnosis, and maybe she didn't want to face the fact that he was dying. Also, if I were him and had to face the fact that I'd never walk my beautiful children down the aisle, never see my grandchildren, I might be in denial, too.
I won't go into details because I don't have permission, but suffice it to say that the aftermath was a mess. I've come to the conclusion that preparation is one of the best last gifts we can give to our loved ones. My husband and I have a will, POA and directives in place; my insistence, when he presented with heart disease. Even though I have a good prognosis, I have done things like make sure all my retirement accounts go to him, if I go first: he will need the money, I've decided, if he lives a long time, given his health issues.
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As long as your requirements aren't complex, Legalzoom.com is a great place to create your various documents. I have used it and found it very good. POA's, both durable and medical can be done very inexpensively there.
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My biggest fear is dying and leaving my two kids behind without a mother
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Suze- i think thats the same reson why my DH doesnt talk about it either- they dont want to think about being the sole parent
... Also my mom was acting like i was on my death bed @ dx! She is so dramatic- which remind me also my brother in law was SO weird right before i started chemo he was trying to get me to sign over custody of my kids to him! (this is my husbands bro) He is in renial failure and goes through dialysis 3x a week so how is he more capable of taking care of my kids than myself?! (or my husband for that matter lol)Pam- thanks for clearing that up. Because of my stage i do get routine scans done and so far no brain mets and i dont really think they'll work their way up there lol (or i hope) i do have lung and various bone mets though....
lori- yeah i cry when i write in the journals... I idd write my daughter a very poignant letter when she was only a few days old (so 5 yrs before i was dx) i need to let my husband know where that is LOL to maybe i will leave an instruction manual, just with basic things like where i keep the warranties on everything LOL or else he wont know!
Chickadee- i am def gonna check out legalzoom, i've see thier ads but havent taken that step to do it but after reading memory's story i think its important to get that stuff together before anything serious happens.
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Excellent thread. Thank you. ma111, for starting it.
I do have a living will/advance directive/power of attorney which gives my Pack Rat the authority to speak for me medically if or when I can no longer speak for myself, and since we've talked about it, he knows what I would choose to do for particular medical situations. His name is also on my checking account (the only money I have, and it's only just enough to live on) so he can pay my bills and rent for me if necessary, too, or if I can manage things tlll the end, just claim whatever's left, if any, when I'm dead and have no more need of it.
I have very little of real material value, If I was going to die today, which I doubt, the only things I have which anyone could use or sell would be a 5 year old Toyota Corolla, and some 1995-2005 era Macintosh computers. I have no houses, no investments, no insurance, no jewelry. I also have no children to worry about, thank goodness (getting spayed may very well be the smartest decision I ever made in my whole life! LOL). I actually started to write a will but haven't finished it yet. I know I want my Pack Rat to have the car and my Macs -- he doesn't need them like I do while I'm still alive, but he might find them handy for something down the road -- and my clothes can go to Goodwill, but I don't know what to do with MY music (archival master tapes of the seven albums I composed and recorded in the 80s) or my rat collection. I guess leave them all to him too. And on top of having next to nothing that's actually worth any money, I don't even want a funeral service -- I'm not religious and I hate funerals because I think they're an expensive ripoff, the funeral industry taking advantage of grieving loved ones when someone dies. Good thing I feel that way because it'll probably use up all I have left to pay for a cremation! (and you'd think I'd look into arranging that too, right? wrong!)
So I don't need or want all that much, I'm worth next to nothing in terms of material value, so it should be an easy document to finish it. I'm not usually a procrastinator either; I'm one of those disgusting punctual prepared types. Like today for my appointment with a new eye doctor, I showed up ten minutes early with the glasses and contacts I presently wear and a list of all the medications and supplements I'm taking -- yeah why would an EYE doctor want that?! The lady who called to confirm my appointment asked me to "bring all your medical information," so OK -- hell I'm a terminal cancer patient so I keep a list in my computer which I regularly update as applicable, and bring a printout with me. And I'm such a gloomy and doomy person anyway, as in eternal cynic and pessimist, wih a mad scientist black sense of humor and was like that for about 15-20 years prior to getting cancer so it's not like I only got morbid when I came down with a serious disease -- so what gives with me on this will thing?
And yes, I bookmarked sites with willmaking software within weeks of my diagnosis (Stage IV out of the gate), which I plan to use after I finish writing "The Final Frontier."
Imbell, please accept my sincerest condolences for all your lost family members.
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Lori, I just got back from my Oncologist - the first time I've seen him since surg - and he explained what the complete response meant in terms of prognosis. I knew it was good but didn't know it was that good.
You're right, I need to get my head out of my butt and go live!!! Right now I'm too stunned.
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texasrose - it is such a scary thought, I know, that I cut DH some slack. He's trying to work through this just as I am. But it makes it hard when I want to talk brass tacks, like "this is how you pay the bills!"
This conversation is great - Lori and Lena - you bring up very important things that should be addressed. I need to get started on the stuff for my kids, pictures, videos, cards, gifts...and I need to do the important things, such as a will, as well. I'm like you Lena, I don't have very much in my name - we do most things under DH's name, it is just easier. But my car, my jewelry, my shoes (my shameful indulgence), all need good homes.
I did give my sister a pair of my shoes and a necklace the last time she was here. It freaked her out, but I told her that I wanted to actually see her enjoy them.
I'll have to check out that legal website. Our will would be pretty straightforward.
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Memory,
Thanks for the post. It is nice to hear postive things about why I have my final things in order. It is so hard for people to understand we do this so that our family does not have to, especially those of us who are single moms.
I would rather have a good prognosis, but we don't always get what we want in life.
PaminWV,
I have also read in a few places that the IBC is the worst, escpecially with the er&pr-. HER+. My tumor didn't show up until a few months ago and it looks like IBC with skin mets. I presented with swollen nodes in 2009. I am also on Herceptin and thinking it will be the brain mets that will get me from what I read. I have much considered no treatment for brain mets as I want to function and keep my drivers liscence and like being able to walk, etc. I feel as if I have lived a long functional life for the dx and path report. Don't you hate it when people tell you they know people that have lived 10 or so years with breast cancer being treated as a cronic disease. They just don't understand that the subtypes are different and they won't let you explain crap to them. I am getting to where I feel like being scarstic with them, but don't want to hurt their feeling, but they are hurting mine. Such a frustrating thing.
I do hope you stay in NED for a long time. Consider some vaccine trails while you are in remission to keep you there. clinicaltrails.gov. I have had good results with one at the NIH. In July they are starting a vaccine only trail.
I do need to write my daughter some letters, I will cry on that one.
Lena,
my sister can take a loan out in my name jusy in case there needs to be some bills paid. My life insurance will apy off my house and my 17 year old daughter can live in it.
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PaminWV,
I did not at all mean to minimize or dismiss your feelings, and I hope you didn't think that is what I was doing! I know as well as anyone the aggressiveness of IBC. I have spent the last two years reading everything I can about this disease and talking to many other IBC patients. My MDA onc quoted a study to me about patients who have complete chemotherapeutic response, and I was surprised by the positive statistics (for once!)
I wish you a life long dance with NED. If an IBCercan do it, based on what I know about your path report, it's you!!
Lori
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Those of you who are stage III, I hope you are keeping your optimism. I'm not sure you need to be posting to death threads yet!
You have a 49% chance of being around in five years - Stage IV only has a 15% chance.http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-survival-by-stage
I do believe it's important to be realistic but lots of women at your stage have a complete response and end up NED so while it's good you are being realistic, you don't want to be TOO realistic!
Prepare, sure - it's what I did when I bought that life insurance even thinking I'd be cured - but plan to be in that 49%.As far as herceptin and brain mets go - 50% of women with metastatic breast cancer end up with it in their brain. The other 50% don't. However, Tykerb does cross the BBB so maybe you all can consider getting on that?
I don't know that I need a will. Everything will go to my husband. I can designate some jewelry for the kids, although I have boys, I suppose. I should do an advance directive though. My husband is a great guy but very passive. He is not going to ever argue with a doctor, he's not going to demand or ask for anything, he won't do any research or question anything, so I'm going to have to make sure I spell it all out as plainly as I can.
The problem is I don't know what "it" is yet. Except, of course, a visit with Brad.
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I prepared everything that I could last year, including what to do with my body. I was sad that I couldn't be an organ donor anymore. But then I found a program through our local teaching hospital (University of Washington) and I willed my body to them. They will pick it up at no charge to my family, and it will be used as a cadaver for medical students. Or, they may just harvest certain organs or whatever for use in teaching. Whatever is leftover will be cremated and either sent to my family if they chose that, or buried along with others in a non-denominational service that all the med students attend each year.
My friends think it's a little nuts how happy I was to find this program, but it has brought me a lot of relief. I like knowing that my body will be put to good use. I like knowing that my parents have the number to call and the body will be taken care of. I like that they won't have to deal with a funeral home and pick out a casket or whatever. I think my mother will probably still have a service of some kind, but I've told her that's for her and she can choose to do it however she wants. . . I'll be gone, so it doesn't matter to me if she wants to do a church thing or outdoor party or anything.
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Cool breeze - not a Brad fan, but im plotting my Gerard Butler weekend, lol.
I do appreciate your words about still being Stage III...it resonates. Unfortunately my odds are a bit lower due to TN and chemo resistance...probably 20-30%. So I'm trying to be prepared...but I do have still have hope!
And if I'm lucky, a weekend with Gerard... -
All of you ladies are amazing! When I thought I was on my way out last year, I did the health care directive, cremation plans, and will from my hospital bed. And I lived!
At least I don't have to worry about all of that paperwork now. But I am worried about what will happen if I become very ill again. I'm not married, but I have a sweet partner of many years who saw me through last year.He's freaked out whenever I talk about death or dying. I don't want him to have to take care of me and watch me deteriorate, so I'll probably end up in a hospice house. Not sure how I feel about that either... It all seems very surreal. I have lost both parents and many others along the way, so I'm not unfamiliar with death. And I'm not in total denial because I address these things but still... wow... anyway... I'm currently NED and holding on tight!Love to all...
Rose.
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petjunkie, i felt the same, sad that i couldnt do organ donation..i like your idea, i am glad you found something you are happy with.
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Pamin..I understand how you feel. No one wants to talk about this stuff but us it seems.Something I do for those I know love me to pieces but cant handle discussing my funeral etc is that when we are all together, say at a party or just chatting while playing cards...I will bring up someone else who has passed. While speaking of their funeral..I just casually say things like how much I liked that type of service. Or which funeral home is my fav etc..Just over time I do this. I have a sis in law who I know will remember these things. I am certain she will be a part of planning services etc. She will make sure my clothes are all matched with my earrings, etc. LOL..Other than my hubby and kids all I have left is cousins and an uncle. I have 2 cousins who have been there thru thick and thin but one of them is technically sicker than I am. She has lupus and her kidneys are starting to fail. So my hubby will most likely turn to his sis for help. His sis also had a great idea that I think I will help get started. She thinks it would be great if instead of waiting for each of us to pass away...give eachother some special momento now. Maybe even give things like that at xmas instead of store bought gifts. I have some things picked out for her specially since we have gone thru alot together. HUgs and LUvs, Mazy
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Coolbreeze, be very careful. If you're in California, and you have no will, your husband won't necessarily get everything, since you have children (for certain types of property, he'll get half, if you have one child and a third if you have more than one!). Chele says she doesn't need a will since she lives in Kansas (apparently she likes the distribution provided for by the intestate succession statute there.
Every state's version of intestate sucession is different. If you don't make a will, the state supplies one for you (in the form of the intestate sucession statute). If the intestate succession statue changes in your state, so does "your will" (if you haven't made one for yourself). If you decide you don't need a will, be sure to monitor any changes in those laws!
There are other advantages to having a will (even if you do like your state's intestate sucession statutes). You can choose your personal representative/executor. You can provide that they can serve without bond (if you like); otherwise, they will have to purchase a bond to protect your estate, and typically the cost of the bond will come out of the estate. You may or may not want a bond to protect the estate, but if you don't write a will, you don't get to choose.
You may want particular things to go to particular persons. That's not something that can be accomplished if you rely on the intestate succession statutes. Please consider consulting an attorney in your state about whether you should want a will. Your state's bar association may publish a pamphet on the subject, as well.
Best wishes to all of you!
LisaAlissa
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I don't even know where to begin. I don't raise the issue and my wife doesn't raise it often either. She has no will. We have life insurance....when I was 32 my 30 yr old wife died from complications in child birth, so I made sure we both have insurance. We still have two kids at home, 12 and 15. Not gonna say money won't be an issue, but I will be able to pay off the house and should be able to pay the bills from my income. I have a good job. We need a will but I havn't wanted to broach the subject. A living will also, because she has told me that she doesn't want to hang on at the end...but that hasn't really been defined. I have no idea how my bride would want to be burried, or where.I know this needs to be discussed, but I don't want to bring it up. We are planning a vacation with our children (including the 21 year old) at the end of the year. My wife is also applying for a promotion. We spent the evening tonight going over possible interview questions. Maybe we are sticking our heads in the sand, but I am glad she is being positive
I know we have to deal with these things because her health could turn on a dime. I just don't know where to start. Or how.
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hi pizza dad, i just want to say feel free here to discuss anything you want to discuss, i know ma111 wants a place where we feel free..so do i
You have had it hard, and i wish you many more enjoyable years together with your wife. I wish i had someone like you!, willing to be a true partner, even when it comes to the hard questions, and things that need to be addressed. A living will is a good idea..i have mine in a draw ready to fill in with my gp when im ready..its hard isnt it..i forced myself to write a will with my brother, who came down from queensland to help me get those things happening...one step at a time.. -
just want to add, i said NO to my appointment this week with my psychologist, and felt great about it. I want some me time. I have had 9 months of appointments/referrals/scans/sessions with her..im taking some time out to think about me. and do nothing, if nothing is what i want to do
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This has been a very interesting discussion. It seems I always see things differently. And this may have been mentioned before, but here's what I'm doing...get the plot, and the funeral home and I wrote my obit since I know DH wouldn't be able to name some of my relatives. DH and I discussed and said he would want to plan psalms, readings, planning other stuff because really, I'd be gone and the funeral is really for the loved ones left behind and that he wants to plan it because it would help him grieve...by planning and deciding what he thought I would have wanted. He said if it were all planned, he'd just go through the motions of going to a funeral and not be involved. I thought that was pretty cool and I'm totally okay with it if it will help him and my kids.
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Just FYI.....a durable power of attorney for healthcare is more important than a living will......at least here in Ohio. A living will only comes into play if you are declared brain dead by two different physicians.
Like I said this is the case in Ohio.
Lori
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Apologies, Off the Topic:
Lori, I didn't think you meant it that way at all. I know you know about IBC and what it can do and how fast. I wish neither of us had ever heard of such a thing, but you are braver than I. The info available about IBC is scary, sad and depressing, like the 12 yr old girl who died from it. I really believe IBC is caused by injury, including surgery, to an existing tumor - I think my injuries were caused by my mountain bike wrecks.
The other reason is that the best and newest knowledge about IBC isn't necessarily available yet except to networking healthcare practitioners, with the two clinics it's changing so fast.
Anyway, please forgive me, all, for hijacking the topic, especially such a vital one.
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Steelrose! I KNEW I forgot something! I'll have to find a hospice house that takes nearly indigents, though. But I'm sooooo with you -- I do NOT want my Pack Rat to see or deal with what's left of me if I get all debilitated!
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Petjunkie- i love that idea! i wonder if them Huskies would want to come get my body from texas??? (i am a transplant org from Oly...) Maybe they can learn something that saves a million lives!!!!
Pizzadad- its not really sticking your heads in the sand as much as living life to the fullest. I am 28 mother of 2 and my youngest starts school this fall, what do you think my stage 4 butt will be doing???? If you guessed going to college to get my RN degree (or whatever they call it) you'd be right. Its a 2 year program and right now i am feeling well enough to go to school, so i am!!!! Oh i know that i might not "make it" through my class but eh what if i do LOL
Lifestooshort- great perspective.... i am glad your husband told you that. i think i will plan everything for "just in case" so if he doesnt want to do it he doesnt have to, if he does then no worries
I dont think i want my kids to see me dying, but for clousre it might be best...
who knows we'll see how old they are when the time comes- if they're still this young i prob will go into hospice... I doubt my husband will let me though- he doesnt even want me going to WA for a 2 week vacation (bought my tix today) he is already depressed that we are going to be apart for 2 weeks- come on we've been married 10 yrs 2 weeks isnt a lifetime! LOL -
Hospice can be done in home as well and that costs less than doing it in a hospital. Depends on the family dynamic whether that's a good idea or not. My neighbor who recently passed away had in home hospice and died at home. It was a great comfort to his wife. Insurance(private, Medicaid or Medicare) can cover hospice or palliative care and from my reading, many hospices also try to assist those who don't have insurance or limited income.
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Suze Ormand has a site that I used to do my will is how I did my will and I change it often....I love that you did this cause we need to talk to others that feel the same as I..
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Thank you for that info, Chickadee. Still don't want my Pack Rat changing my diapers or wiping my drool though. I hope I die before it gets to that.
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Pizzada,
I log off to think of a response. You are a very loving husband to want to know what your wifes wishes are. For me, having my final papers in order was a stress relief that lifted a ton of weight from my shoulders. It was than that I felt I could live life to the fullest. Your wife might also be thinking about how to start the conversation and may not want to upset you. Maybe start off with saying; "I will make sure your are as comfortable as possible". If she wants to talk about it that might just be the opener.
What do the rest of you think?
In regards to living will, the PA laws kick in when you cannot speak for yourself, you do not have to be brain dead, brain mets counts as not being able to speak for self. The idea of going to a site with state specific laws is a good one.
Thatlife,
I have skipped more than one psy appointment. Sometimes it feels good to be in control and take me time. We need that now more than ever. I get tired fo playing patient all the time. This week I told my onc we are going to every 3 weeks on the Herceptin.
I also don't want anyone one to change diapers or wipe drool. Brain mets is the fastest death, hmmmm.
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pizzadad..after talking to my brother about all the loose ends i hadnt organised, and which were bothering me over the phone one night, he suggested, as i mentioned earlier, that he come down, in about a month, and we would get through some of the crappy things that were on my mind...it was good in that i had time to get ready for it, and was so relieved to get most of it out of the way. When he left, i felt much more in control. So maybe, an idea would be to approach it like 'why dont we organise a weekend to get all the wills/POA/wishes out of the way, then we know it's done, and we can focus on our holidays, and the future'..or something to that effect...
ma111...yes, its good to take control for once, and get off the merry-go-round
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Lena: i admired your stand on the other thread..
i recently asked my best friend from 30 yrs ago, who was also my first serious BF at 16, to administer what is necessary when the time comes (with hospice nod) so that i dont 'linger'..palliative sedation i think its called, and he was happy to take the role on...but my vanity is now thinking, do i want him, who loved me as a young girl, to see me and spend time with me at the end?...who will shave my tamoxifen whiskers before he arrives??? lol....so am reconsidering...im thinking, hospice outside the home, as i dont want my 13 yr old to have to peep in my door every morning wondering if im alive, (at whatever age she will be) as i did with my mother.....and just professional staff to help me...its a hard one..
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that's-life - the in-home hospice is something I struggle with, as there are no free-standing hospice centers within 30 minutes of me. I want to have access to my family and vice-versa at the end, but I'm afraid of it being traumatic for my kids, and then they'd have the memory of me dying at home...
Is it possible to do in-home hospice, then go to the hospital at the end? Is that even preferable? -
Lena! NEARLY indignent? I'm there!
Maybe we'll start our own Hospice House. Doomy gloomy indignents only... love it!. I try to keep it upbeat, but man, this cancer is ****!!!!Texasrose... So fantastic that you're getting that degree... no limits...
xoxo
Rose.
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Thank you for starting this thread.
I think planning for something you know is inevitable, and not just dumping it on the survivors to deal with, is not only practical, but a great act of kindness.
It is also a relief to be able to talk about these issues that most others in our lives understandably want to avoid. I also enjoy the humor that runs through these posts. I'd be lost without that.
Hugs to everyone,
Rachael -
Oops, Lena... "Indigent!"
Yeah, well, me too... it's getting gloomier by the minute!xoxo
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Lena and steelrose,
So sorry to hear that you guys are in the gloomy phase. Praying for you that you are as comfortable as can be.
Suzie35,
It is very much possible to start at home than go as an in patient. Most hospice have both for that reason or you could go to the hospital.
One of my biggest fears is that part taking too long and being just totally miserable. I hate thinking about that part.
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I think I wouldn't want to be at home with my family. It would be much tougher for them never being able to get away. I do fantasize about dying by the sea (which would be far from where I live). I read about a woman dying on a boat during a sailing trip. I think that was a story in Dr. Susan Love's Breast Book. There is something romantic about that.
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My family are having a hard time believing that I am going to die, that I have a terminal illness. I get all the time 'but you look so well!'. I feel like screeming at them but that would be a futile exercise on my part.......all I can and do do is let them know what my wishes are little by little as they become open to the suggestion. The rest is up to me to make sure that I have all things ordered in such a way that it is easy for someone to just step in and carry on. I am, over time, cleaning and sorting all of my possessions so when need be, my daughters will be able to dispose of things easily and in order. I have so much craft goods that I will let them know that I would like all of it to be donated to a charity that can use it to raise funds. My jewellery etc has already been designated as to who is having what so there will be no arguments. I have a trunk full of things that belonged to my son that I have put away for his son and this will be put in the hands of my eldest daughter to give when she feels that he is ready and responsible enough to have it. The household will stay as is and will pass along with my car directly to my DH as is the law here. I have discussed what music I want played at my funeral with my eldest daughter as I know she will remember (she has a memory like an elephant.....never forgets a thing). I have already reistered with Paliative care so all I need to do when required is to make a phone call and all with be put into action. We have spoken of the 'Plan' for later and what I would like to happen but of course that totally depends on wether I am able to be at home. It will I think all change should I need to be hospitalised. The rest, I think, will be a day to day thing and hopefully the days will be many.
Love n hugs. Chrissy
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I love this thread. Its so comforting that I can read your post and feel that same. I have 2 children and I struggle with the thought of passing at home. My mother died of breast cancer and spent most of the time at home. She was on oxygen 24/7 and seemed to be uncomfortable. It was a struggle for my dad and younger sister that still lived at home with her. Her last 3 days were spent in the hospital. This was 17 years ago. My sister & dad said it was very hard. I was married and lived 30 minuets away. Visited everyday but its not the same as living with her. I feel that our home should be a safe haven and something not filled with sadness. I have cleaned out my jewelry box (of junk jewelry) and closets of things that do not mean anything to me. I told my husband I want to be cremated and have the urn at the funeral home, no coffin or body. After that I want them to do what ever they feel they can handle. My feeling is there is no right or wrong I am already gone and anything they choose won't hurt my feeling or be wrong.
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thank you for this thread..
I am fortunate to have an organized husband and we have addressed many logistics. I will talk to my kids about home hospice.. They are very familiar with it actually.
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DH and I have been working at the paperwork end of things for a couple of months now. One resource I've used in the past and even my atty today says is good, is Nolo Press, a great self-help legal group, with several state-specific items. They have everything - I did my own divorce through them back in 1975. I am now ordering "how to be an executor" book for our nephews who will be our executors, and sticking it with the final papers. You can find them at nolo.com.
My best to you all.
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ma111, don't worry, I'm ALWAYS gloomy! That's part of my NORMAL personality, it's not all on account of the cancer. I suppose it helps to be gloomy now that I DO have the cancer (when you think the worst and it happens, you're not so surprised and disappointed, but when you think the worst and something GOOD happens, it's a really pleasant SURPRISE!), but no, I didn't suddenly turn into a cynical, bitter pessimist upon hearing the doctor say, "You have inflammatory breast cancer. It's Stage IV." I already WAS like that! LOL
Actually I just GOT about an even amount of mixed occurences, so here's a perfect example of it:
1. When I was told I had to have a BMX in May, I thought my whole summer would be shot due to having to recover from it.
2. As it actually happened, the sequelae of the BMX (plus removal of some skin mets on the skin on my right ribcage area) has been turning out not nearly as bad as I thought, and no, recovering from the surgery will NOT ruin my summer. I even got to start my container garden. Oh, and even BETTER? My surgeon told me that as far as evidence was concerned, she got ALL the cancer out, and she goes on to add that with this serious reduction in the tumor burden my body was carrying, I might actually feel some physical energy soon. Key words here are, of course, "as far as her evidence is concerned," which now brings us to:
3. She says I really need to have rads on that area where the skin mets were, and she's positive that if I don't, they and probably more just like 'em will be popping back up again within a few months at most, and I know my oncologist (who I have an appointment with next week) will back her up strongly, since she (my oncologist) has also occasionally whispered the word "radiation" since I showed her the first skin met.
Conclusions:
A. Did my surgeon say RADS at the same appointment she said "physical energy"? I guess I'm the only person who even notices things like this. Sooo, I was right the first time: My summer IS going to be ruined, even if it's rads that ruin it and not the BMX. I mean, how is being exhausted at best from rads, between the rads themselves and having to drive 60 miles a day round trip to go get them, for however long I have to go for treatment. Still waiting to be scheduled to see the radiation oncologist though so I don't know the precise details of my dosage, number of treatments or for how long I have to get them -- going to allow me to enjoy the summer or get some energy going?! I mean even if ALL I get is tired -- which would be "good" because I really have very fair, hypersensitive skin as it is -- like how much time am I going to have to enjoy and how easy will it be to make plans to, or actually do fun things, i.e., actually live my life while I still have it -- if I'm constantly tired plus busy every day driving to and from the cancer center?! (and THAT's ONLY if it goes GOOD: i.e., no skin issues in the treatment area.) And no I don't like to drive, so that won't be "fun" I can mix up with the treatments.
B. You see, I was right from the get-go on this. My summer is going to be totally or almost totally ruined. Good thing I'm so negative! LOL
If I was one of those cheery optimist "hope" types, I'd probably have gone insane having all that hope smashed against a brick wall.
So OK, back to the Gloom and Doom... LOL yeah steelrose, "indigent." Don't tell me you already have brain mets...! :-O
Anne -- yup, I know what you mean -- "let them" (them being those you leave behind) do what they want with your cremated remains. I suppose I'll actually need to clarify more that kind of thing in my will (when I finish it: still haven't gone back!). I mean it when I say that I personally don't need or want a funeral, so that's why I won't be planning one or leaving any kind of guidelines, but if there's anyone who WANTS to have a funeral or memorial service of some kind because it gives THEM closure and makes THEM feel better, it's OK and they can do what they want. (Like I'll have any control over anything after I'm dead! HA!)
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ma111 - thank you, that is reassuring.
Chrissy - I hope that my family will agree to palliative sedation early on, rather than waiting. It is something my mother will understand, but she won't talk about it much with me now
.Anne - I agree home should be a safe space. I want to spend as much QUALITY time as I can with my family, but when things turn, I want to be able to go to the hospital. I can only hope that is the right choice. I also want to be cremated and have the urn at the funeral home. After that, it is my DH's choice - he can have me interred at the cemetary with my grandparents, or keep me around until he is sure he is settled. He would likely move to be closer to his parents.
Thank you for the link Lost_Creek - I will check that out.
Some things I HAVE started doing are journaling for each of my 3 kids, mostly day-to-day stuff but I always try and sneak a "life lesson" in, hopefully not too obviously. I've also gotten three plastic bins and started putting things in for each - pictures they've drawn, notes they've written, art projects. Things that mean so much to me and that I want them to have. I also had my wedding dress cleaned and packed for my daughter so she'll have it.
For those that have lost a parent, would it be too difficult for my children if I bought them things for throughout the years? For example, a cute outfit for my daughter for when she's older? Gifts for birthdays? Cards? I just so want to be a presence in their life regardless, but I don't want to make it any harder.
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I like dying on the boat.
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Just wanted to let you all know this regarding Hospice. My psycologist encouraged my husband and I to get our questions together and visit our local Hospice - we did this about a year ago. We had an appointment there with a Nurse Practitioner and ask a lot of questions about in-home vs their facility (they only had 6 or 8 beds available at that time). They seemed to indicate that these facility beds were saved for certain situations. We probably spent 2 hours there with our questions - I think it helped my husband a lot.
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Several years ago I saw an interview on some TV show of a father and daughter. The topic of discussion was the letters the deceased mother had left for the daughter. Very interesting. After much searching and googling I've found that it was Rebekah Gee and her father, who is Pres. of Ohio State. Google Rebekah Gee Letters from My Mother. Tried to put a link here, but couldn't get it to work. Maybe someone else can. Couldn't find what show - but at least I know I didn't dream it. My memory is that the letters were both a blessing and a curse.
I do not want to die at home. Even with Hospice (at least, our local Hospice) family members are the caregivers. No way do I want to put that burden on my only surviving daughter. My dream is to live at home, pain free (thanks to hospice) for several months and then go to hospital and peacefully check out! We'll see.
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Anne- you said it- our homes should be a safe haven... even tho i live in an apartment (right now) i dont want my kids to thing "thats the room mom died in" refering to which ever room i am in... Thats why being away from home makes sense to me right now... maybe in a few years that will change....
Lena- Yeah i hated every minute of the ride to rads which for me was 45 minutes each way... It sure did take a lot out of my day! I would say cancer did ruin my summer last yr when i was first dx because i had bought water park tickets (season passes) for me and the fam in feb- pain got really bad in april, dx in july with cancer, everytime we made it up to the city with the water park (3 hrs away) it was to see which ever dr for whichever scans. We ended up ONLY going to the water park 2 times! Very bummed out over that. This yr we got sea world passes and i dont give a crap what i feel like i am going NO MATTER WHAT lol (i have my days where i am miss gloom and doom LOL) BTW i dont think it was the rads that made me tired but the LONG drive!
Suze i wonder that too- like could i be hurting them more to leave gifts behind or will they look forward to it and see it as a positive...
Alpal i think this is the artical you're talking about http://www.dispatch.com/live/content/local_news/stories/2010/06/06/letters-from-mom.html
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Thanks so much!
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i teared up reading that artical... it just reinforces the fact that we are so important to our children- i think had her mom not written her those letters she might have had a harder time coping with her husbands death... Her mom gave her the coping skills after she passed...
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One of my friends mother dies from cancer when she was young. Knowing I am stage IV, she told me how much the letters her mother wrote to her mean to her. She said when she really gets to missing her, she gets them out and reads them.
I also do not want to die at home as I think that would bother my daughter who plans to live here. One statement she made was also "I'm I going to come home and find you dead, what do I do?" She is 17 now, but still too young to have to deal with much from a dying mother.
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I noticed all who said they didn't want to die at home mentioned that they thought it would be a burden or upsetting to their loved ones. I think that opens the door to talk with the family members about their feelings.........they might agree or perhaps they would consider it more difficult in a hospital setting.
I think the person who visited and talked with Hospice folks made a wise practical decision. Visiting a hospice and talking to hospice workers when the time is right would give us the full spectrum of information to make a decision on.
Personally I dislike hospitals with a passion and I think I'd prefer hospice support in my home but I'm nowhere near that decision yet, but it's food for thought.
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