A place to talk death and dying issues
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Eeeesh. I'm now going to have to applaud ma111's opening post warning those who wander in here who are squeamish about the death and dying thing -- "IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE."
Well do you like THIS one? I am going to have to stop coming to this thread now. Oh, I can handle, relate to, occasionally even join in on all the general and specific talk about the "we should make plans for what to do about what kind of medical care we want or don't want, who we want to have our stuff or our money, before we're too ill to do it or even speak for ourselves"; if we'd "rather decline and die at home or in hospice"; writing obituaries, leaving scrapbooks or what-have-you for those we leave behind, making funeral plans (or not) and so on, and I don't think that's even slightly morbid, Oh, and good one, Suze35, about wondering what those we leave behind will do after we die; as in feeling heartbroken at the idea of one's husband or lover "moving on" after mourning us, yet at the same time wanting them to be happy and loved even though it can no longer be with us. I do totally get that one -- no kids to raise but at the same time I shudder at the thought of my Pack Rat loving and being loved with someone else, I have to smack myself and yell "HUH, what is THIS crap? You WANT him to be unloved and celibate for the rest of his life after I die? NOT!!"
However, I can NOT handle this thread any more on account of all the hope and afterlife and prayers and the still pervasive warriors who go out fighting attitudes and the mere idea which is held implicitly, sometimes explicitly, that stopping treatment = giving up the "fight."
Sooooo.... I gotta go. All the best to you.
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That's Life------Chrissy is so right. Palliative care is a fairly recent concept. The doc's involved have taken special training and are so good as are the Social Workers. Nurse too. Sheila
This was in response to Chrissy responding to ThatsLife on p6 . This thread is moving fast
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MA111- Yes, you are right about the scary unknown of dying. I think I am so scared of not living that dying seems, in comparison, to be not as concerning. That sounds really stupid!! (me stupid, not you, hee hee)
Scuttlers- I understand what you mean. My attitude is similar. I also know that eventually treatment stops working. Although I fight as hard as I can and do the most aggressive treatment possible I realize that I will die of this cancer.
I don't think it is "giving up" to come to peace with dying. I pray to God that I handle what comes along with this cancer "journey" (including death) with strength, grace, and dignity. I refuse to let cancer define me, but I don't mind if the way I handle it is part of what defines me. That does not mean I do not fight like hell each and every day to be here.
Lori
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I've been reading here since the begining of the thread, but until now had not posted. Well today I got AHA moment and decided it was time.
I'm grateful for a the suggestions about wills, things to be given away etc.,etc.......Today I was at onc's office for Taxotere second round in a year. Arimedex and Femara failed me and I started to get new tumors, none to organs thank goodness just progression. Anyways onc said I'll continue til mid July then they will scan and hopefully start Faslodex, but if Faslodex fails then I'll be on chemo forever. That's when AHA or OH SHIT moment hit! Do I really want to do this the rest of what ever life I have left and when will that enough is enough moment hit?
Looks like I better get busy planning that trip to Tuscany (with what money I don't know), Gotta get my papers in order, have THE TALK with DH. Not that I feel like I am going anywhere soon, but I know that all of you get me.
Take care all and thanks for all the advice I'll be getting busy soon.
Peace and Love,
Edie
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Lori - you have so eloquently expressed how I feel about this. Thank you.
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Lori,
That does not sound stupid! I undersatnd what you mean and thanks for explaining the peaceful death/fighting issue more clearly. You are a good writer.
Lena, I understand.
Hi cookie, I will say a special prayer for you tonight. Not everyhting has to be done right now. Sorry to hear it's all chemo for you now, this disease just plain sucks!!!! I am on a vaccine and low dose chemo trail now and the side effects are so much less. i also saw some disease reduction with just the vaccine. They wait 3 weeks after the vaccine before the low dose chemo. However, it is a phase 1 study and who knows what the results will be.
Well all, I am taking Vicodan today and it is times for me to nap, I feel like a kid saying that.
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I think it takes so much courage to deal with everything from the first words out of the drs. mouth "the results are postivie" or " you have cancer" or "it isn't good" or whatever the words are, from that point in time how we deal with it is an individualized time. Someone want to know everything, some people don't want to know anything.....we hope and pray that whatever the professionals put us on based on their education and experience is something that will either get rid of it for ever or a period of time, or keep us comfortable or extend our lives. We know what is coming, eventually, are we allowed to be upset, depressed, down absolutely we don't have to be strong all the time, we don't have to be strong 1/2 the time, we need to live our lives whatever they are which ever we want to, surrounded with the people that we chose to be in our lives. If people don't like how we are "handling" it or the way we "talk" about it, then they don't need to be included in our cicle of people, cause they are supporters. Supporters, IMO are the ones who love you anyway and are there for the right reasons and don't leave you when "cancer" is too painful for them to tolerate.
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blondie, Your post is just so sad. I wish grown kids of those with cancer would just really think about their actions and realize what they are missing. HUgs and luvs, Mazy
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Does anyone know if one can die at home w/hospice care if one lives alone?
I thought I read somewhere that hospice will only come to a person's home if a relative/friend of the dying is there 24/7.
If this is true, it worries me terribly. I live alone and do not have family, nor can I expect a friend to take time off from work to be at my home 24/7.
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good question jelly!!
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Susan- Love the humor at the end- i wanted to give my niece my nissan sentra but she couldnt learn how to drive standard either! (her dad wanted to take over the payments) Its good that you do these things with her, even if you didnt have bc these are things she'd need to learn.
Thank you for that insight pizzadad! It solidfies what i am doing
corian- thank you for posting, it is really wonderful to hear of people peacful passings.
I have a sister who says she doesnt believe in God, her son was 1 at the time and he was in the hospital with meningitis. He had been there a few days because they really didnt think he was going to make it, she had left to go to work while her older son and hteir father sat with the baby. When she came back she saw through the window a woman standing there, when she opened the door it was just her family. She asked where'd the woman go and both her son and boyfriend were puzzled, she knew right then her son was goingto be okay. He had a gaurdian angel there with him. Funny my sister says she doesnt believe in God but accepts the fact that his messangers existMa- thats wonderful that they are going to use you to study why- maybe one day NO ONE will get nuropathy anymore!
Peggy- i believe her story with no doubt in my mind, how in the 1920s would she have learned of something like this before TV, and internet! Now we chalk it us to the idea was planted in our minds because of a movie we watched and so we dream of it.... Nope this sounds like the real deal.
chickadee- because of my husabands line of work i assumed he'd go first (police officer) Not that he'd die in the line of duty but statistically officers often die within a few years of retirement, not sure why....
Blondie- sadly they may not realise til its too late to make up for that time lossed, maybe if one of them went wth you to the drs and heard first hand.... (i had a sister in law, well still have but havent talked to her in almost a year- she went all crazy thought i ws faking my cancer and actually called the police who showed up at my chemo treatment- LONG story but anyhow i figure its her loss not mine)
Jelly- Not sure that'd be a good question to ask them...0 -
I need to get busy.
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Texas rose--------Please tell the story of the SIL sending cops to your chemo--------What did they say to you? This is so far off the map. Then what did SIL say. Was she sited for making a false police report? Details please, real nosy on this one !
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Talk about toxic family members.........that SIL takes the cake.
Like anyone would put us through treatment without clinical evidence of the disease......sheesh. Guess she thought you were getting RICH off those SSI payments........NOT.
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Okay this is the story- (sorry its very long)
My husband has 7 brothers and sisters, each one is married- so thats a LARGE amount of in-laws... My husbands brother F is married to K, she has in the past done things others that was rude and immature to other people, but has NEVER in the past shown me her true side. I am close to a majority of my husbands brothers and sisters- even when they arent talking to eachother they are always talking to me- sorta like the glue... So anyhow we moved back to TX in Sept of 09 went to F&K's son's birthday party in nov. with no problems, they came to my sons birhtday party in nov as well... We kept calling them to see if we could get together for a dinnre or something and they'd say we'll call you back and never call. It got to the point where we knew they were giving us the cold shoulder, which for me hurt because i knew i never did anything to either of them, when everyone called her the b word i would stick up for her and say this or that about her....
So fast forward to July of last year so its been 8 months since we've talked to either of them... Oh as a side note i am friends with K's sister and i went to her sons bday party in may 2010 and of course f and k were there it was a little akward at first since i knew they had been ignoring me for so long, so anyhow my daughter's birthday is the 1st week in July, at that time my husband had wed thurs off, we in june moved 3 hours away from our family so we opted to do a birthday party in their city. Of course that means either wed or thurs, my brother in law has to undrego dyalisis mon,wed,fri every week so we chose to do the party on thur so he could come along with his 8 year old daughter. We did a BBQ with a bounce house for the kids, it was a bug themed party- very cool and low key. Needless to say even after i mailed off the invitations 2 weeks before the party they didnt RSVP for the party, or show up. No sweat off my brow really. Also my husbands sister L didnt come either, didnt rsvp or anything either. (this is important later) So that was july 8th, on july 22nd i was dx'd with breast cancer and we figured it was bad because there was lymph involvment.
Cancer is NOT news you want to have to tell anyone over the phone. So i called everyone and let them know that we were going to have a dinner @ my father in laws house and we'd love for them to come. Simple like that, well of course F&K and L did not show up. L actually called and said she couldnt go because her husband's mom showed up, i said bring her with but she said no they cant make it. Fine no problem. For those we came we let know of my dx and let them know that we could really use their emotinal support, but we told them NOT to tell any of the family members who decided not to come. We didnt and still dont want any fake sympathy. People who are there for you should be there in your good and your bad!
So of course i have a sil that is only 23 and very immature- so she goes and texts K and made it seem that my fil was sick, she said something like "have you talked to our fil recently? someone is sick in the fam" Anyhow so they get into it and it comes out that i have cancer and lo and behold they call me!!! I was angry beyond belief and instead picking up and cussing at them i let it go to voice mail. Both of them apologised for not being there and such. After a week i felt better and called both of them. The conversation with K was so emotinal, we cried, she said she quit smoking and she felt that my dx was her dx ect... She explained to me that she felt we had intentionally planned the party so she couldnt make it, they actually never opened the invitation until the day of the party (goes to show where we are on her priorities), i explained why we picked that day and told her had she called me i would have gladly told her. She went on to say when she got my voice mail she heard it was me and deleted it without hearing beyond we want them to come over. SHe said she figured that we were re-doing my daughters bday party (wth you are not that important htat your presence was missed enough to redo a party) Anyhow so we squashed all the bad blood. Oh yeah and she told me the reason she was ignoring us and not answering my emails, texts or calls was because i was close to the other siblings that she didnt like- which to me isnt really a good reason.
So she really turned this new leaf (for the moment) she was calling me constantly to see how i was doing, added me to her facebook, started the fundraiser which was successful. Really a new leaf. Whereas the other family memebers that had been there for me started backing off because i was so close with K. So it was like a double edged sword. There was a lot of bad blood between all the family...
SO sept 18th we had the fundraiser, raised a little over $5,000 and as you all know in the begining there are so many doctor visits, tests and all that i had over that much is co-pays, not to mention gas and all that so it was helpful. By this point i was already undergoing chemo, knew i was stage 4 etc...
HERES WHERE IT WENT WRONG- i am not sure how many of you are aware of the famous river walk in san antonio. We had the fund raiser at the VFW post off of the riverwalk and so there is a lot of foot traffic- me along with K's sister sat near the riverwalk enterance and solicited donations. There was this whole group of bikers that showed up because apparently the head of their chapter had them come, it all and all was awesome. Meanwhile my other bro in law D and his friend was bbqing the chicken (part of the plates we were selling) and apprently the chicken was underdone. A co-worker of k's said that she couldnt make the fundraiser because her mom was in the hospital from food poisining (which happened before the bbq but K was so stressed she snapped) she started flipping out and i have a saying "its just a speed bump" meaning whatever life gives me it may slow me down but it aint gonna stop me. She was yelling its not a speed bump its a damn mountain ect... But people were satsified i never got any complaints. I personally raised $1100 that day and had it in my bag, they had the rest of the money and instead of just giving it to me there she said she'd take it home to count it and give it to me later.
I was staying at L's house so that is saturday, sunday all hell breaks loose. I wake up at 6 in the AM with a bunch of texts from K saying that i went above and beyond what my chemo is going to cost me and i need to pay back the people that donated (besides the bbq fundraiser she set up one of those online donation sites which my friends and family donated to- that raised a little over $500) SHe said she was going to keep a certain amount for her co-workers. i told her to do what she felt was right. SHe then tells me to go onto face book and see whats going on, i told her L was sleeping (the computer is in her room) she demanded i get on, so i woke up L and her husband to get on line. There was her friend on her own site saying that her mom was in the hospital from food posining, K replied that we'd pay any hospital costs. And all this other crazy mumbo jumbo. (On a side note that friend of hers emailed me personally and let me know that they NEVER made it to our bbq that her mom got the food posining from a breakfast taco)
Anyhow so K was saying that i should be happy that i made all this money and that if i didnt pay back whatever was beyond the cost of my chemo that i ws making a profit off of my friends and that i did this for the money. I old her to calm the F* down, she can have all the money, i never did any of this for money and in fact i never even suggested they do a fundraiser because even though my husband makes beans we will eventually pay off our debts without the help of all these people. SHe was wigging out and so i grabbed L's car keys (btw my kids were still asleep at this point) i had intened to drive over to K's house and kick her ass! l grabbed me and said she'd go over there to talk to her and calm her down. I handed her the bag with ALL the money and said take it. K wants it, she can give it all back i dont care.
K had made all these accusations in our last call so i told her "you're a crazy psycho b****" and hung up.
So I called my best friend to come and pick me up so i could stay with her, i had chemo the next day and my husband was back home working. I told L that i was only going to my friends to wait for my husband to pick me up (which wasnt true i just didnt want them bothering me)
So K preceded to email a few of my friends off of facebook that had been the biggest supporters of me (which all 3of them forwarded to me) that she thought i was faking my cancer, that i had yelled she was a B**** after she asked to come to my chemo, that my head was obviously shaved (no shit as most of you know you get tired of the hair falling out in clumps so you end up shaving it yourself) among other things, so totally discrediting me to my friends. How did she explain the port? Self surgery??? My friends asked that then she changed it saying it wasnt as severeas i was making it out to be.
So she is saying on FB where everyone can read that i am faking it, that i am refusing to allow them to come to my chemo and all this other shit. Like how i was "running up and down the river walk beggin for donations" Everyone that knows me is blasting her telling her that she's a liar ect.... I told her through one of the friends that she was emailing that she is more than welcome to come to my chemo, see my dr and ask any questions that she wants. I will pay for the time if needed. She says fine she will send her sisters husband to come because he has the time off. I say no problem, i have NOTHING to hide. Also as a side note he sister is also saying these awful things about me as well.
Well monday rolls around and i got to my chemo appointment, i get there and there is this police officer there, i remark to my brother- i hope that cop isnt here for me. My bro says no K wouldnt stoop that low (well yes she would!) So the cop comes and goes, instead of goingto the infusion room my dr asks to see me.
Just as a side note as i am typing this all these emotions are flooding back, i can feel my heart racing, sorry if it seems all over the place!
So i go in and see my dr and i ask, were those cops here for me? He said if i knew who "X" was, i said yes that's K's mom. Well apparently they thought that either my dr or myself was running a scam on everyone and that i didnt have cancer, my dr showed hte cop my medical records. Oh and they accused my husband of coming to their home on sunday and breaking in (funny cuz i he didnt really come back into town) My dr and i had a talk about these kinds of people (he felt K was crazy just by what she was doing). Then i got hooked up to my infusion, about an hour into it my dr comes back and says K and her sister are here, they'd like to talk to him and he can turn them away or be open with htem its my choice. I said lets nip this in the bud because they obviously need to see for themselves that i am being truthful because the cops couldnt convince them.
So they talk for an hour, they both come out crying apologising to me and everything and i am like okay. its fine its just a speed bump, go home rest ect... They leave and my dr comes in and says they left a cashiers check (the $5000) for me so they (the dr office) could apply it to my balance, but he said that it wasnt their choice what i did with my money so he gave it to me. I finish my chemo and head back to my bros house...
Well unbeknown to me they had come back to the oncologists about an hour after i left and asked what they did with the check, they told her that they gave it to me, and that set her off. They had to ask for her to leave.
All of a sudden i am getting all these texts from my friends saying to get on to facebook, so i get online and see she has posted well over 25 messages, how this strange truck (also posted the pic) was following her, that someone keeps coming over to her house and trying to rattle the windows and some other crazy nonsense. THEN SHE POSTS THAT SHE SPOKE WITH MY DR AND THAT MY DR CONFIRMED THAT I HAD STAGE 4 AND THAT I ONLY HAD ABOUT 2 YEARS TO LIVE BUT HE SAID IT WOULD DEVESTATE ME TO FIND OUT! why in the hell would you post that on my facebook if you are concerned for me?!?!?!?!
Well of course my friends arent gonna let her say these things without commenting back, it went back and forth til tuesday (when i had to get my next day shot)
And i chose to take the high road and not comment back AT ALL, apprently that pissed her off enough where she and her sister removed themselves from my fb friends, well she would call me and i would let voice mail pick it up, she'd leave 1 message sounding sweet as honey and then the next day call back and say evil she said "that the reason why you're dying is because you need to get right by God and that no one can save you now, I cant save you no one can save you but Jesus" puhleese! I still to this day nearly a year later have not contacted her at all! I ended up having to change my number because she kept calling.
Oh yeah and after they removed themselves i posted pics of my fundraiser on my fb, somehow within minutes of me posting they knew, her sister texted me and asked me to remove ALL pics of anyone in her family, i did and within minutes again she texted me Thanks. So i deleted anyone that was a mutual friend, obviously they were able to see my private pics! Family or not so L was removed.
Oh and L when i left her house made this big dramtic scene saying how she knows i will take my kids from her and she was sobbing over them, they were 5 and 2 at the time. i told her that no i will always be in her life and i will see her later, she said i dont believe that, so i said see ya at my funeral which pissed her off- i said it jokingly because she was making a scene. Well anyhow i sent her pics of the kids (snail mail) she never called me, i called her for her bday and she never called back... so she once agian is ignoring us too...
i will say thing, when someone is dying or died it brings out the worst in people. this was while i was still here, just imagine what she is capablie of when i am gone. this should be a reminder to get our affairs in order.
edited for clarity, lol when i read back i seem to skip a lot, let me know if i lost y'all
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chickadee, this actually happened before SSI, but yeah like i am using this terrible disease to make $, when people ask if they can help i turn down money saying prayers please
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OMG, Timothea! This is the last kind of stuff you need while dealing with stage lV breast cancer! What is wrong with people?
I'm so sorry you're going through this added stress. They sound like a bunch of crazies! Stay as far away from them as you can, even if you have to get a "restraining order".Peggy
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Texasrose-----------the woman is unglued. She is so far out their that it's hard to fathom. It's too bad to have someone in the family that can cause so much disruption to those that care about each other. I'll be back want to ask someone thing about this-
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Texas,
Oh my God, OMG< OMG.
I will never feel sorry fro myself that my sister hollered at me for telling family I had cancer!!!!!!!!
Like there isn't enough to deal with, family of all people act like a*&^*s.
You are a better person than me. I am planning on ditching a 4th of July family party because that same sister is now out of denial and celebrating my possible last holidays. How do you manage to forgive her and ever have given her the time of day. I guess I hold to many grudeges.
I agree with Peggy, "restraining order". Stay far away. I don't know if I would have let them in the doc's office.
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texas rose-----I was going to ask someone that might be able to give some legal advise. But then decided against it. I agree with MA, restraining order for your treatment center your residence etc. Itseems to me she has violated your right to privacy by putting your private medical information on the internet. That could have an economic impact on you in the future. You mentioned that money was tight. Contact the legal aid department in your community and see if you can't get their opinion. Or let this ride here for a few days and seewhat other people have to say
or delete now. C&P and send it to someone her that will archive it for you. The reason off the top of my head regading deleting now is----------she' fruitloops enough to try and say you are sladering and /libeling her.Since you have your real name associated with Texas steell rose. She is fruitloops enough to have figuired out how to monitor what you say here.
ON "OMG THEY FOUND A CURE FOR STUPID" WE FOUND MANY OF THE THINGS WE WERE SAYING WERE BEING REPRINTED On FB
Delete from here as fast as you can. MY instincts are strong on this one, IF you feel safer deleting do so. but get it off the board somehow fast. I'm posting now and will give details later hopefully you will see this real soon sas
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TEXAS ROSE-------when we found out things were being put on FB, that included our names and dx many of us deleted info from our profile sites. If you notice i'm just ----sas----Thats why.
Others that had picture avatars changed them to something else like chickens.
I'll pm you with my other thoughts
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I moved to Tx to get away from crazy family members. So sorry you have to be even 3 hours close to this one.
I think SAS may be right. You've revealed too much and this crazy B might just try to continue causing mayhem in your life.
Reinforces my decision not to get on these social networks like FB. People use it for some pretty horrific behavior.
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My brother died at 1:25 A.M. today. He had been diagnosed with lung cancer less than 3 months ago. I am feeling so dead. I should be crying. Instead the chemo brain makes me forget temporarily what has happened. This is the third member of my family who has died since I was diagnosed in 2006. All younger than me. I feel weird like they were sacrificied so I could keep on going. I think I am losing my mind.He died in Palliative Care and yes they have come a long way. He had breathing issues but they never let him be in pain. May we all have the same when the time comes.
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imbell, I'm very sorry you lost your brother.
I know you will miss him so much. This on top of everything else you have to deal with. Don't feel like your family members were being sacrificed so you could keep going. Some types of cancer take people sooner than other types. I knew two people who were diagnosed with cancer the same time as my Mother and they are gone now. At least with breast cancer there are lots of treatments.Peggy
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imbell,
I'm so sorry for your brother's passing... May he rest in peace.
Yan.
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Timothea,
I'm like... OMG!!! There're some nuts people around...
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Imbell,
I'm sorry for your loss. My condolences.
Lane
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Imbell, I am so sorry. It's not possible that they were sacrficed for you.
Texas, OMG again and I think the others are giving you good advise. There is not telling what that B will do.
Others, I am not aware of what has happened that you took pictures off.
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Imbell, I am so sorry to hear about your brother. I'm glad he had the type of care that helped him be as comfortable as possible.
Keep your loving memories of him. Some day they will bring you joy.
May G-d send you comfort.
Leah
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Imbell, I'm so sorry for your loss. We don't know each other at all, but I'll take the liberty and call you Dear One. You are not responsible for any of this.We know not the time or place nor the reason of our demise. It happens. No explanation can make us understand. No explanation can make it easier. It is. If you have been blessed to love each other and have happy memories to carry with you in your heart for those that you have lost, it will make the tears easier. When you are sad about each of them leaving, remember the very special times you had together. The tears will flow, but they will be less hurtful. Let those happy memories gladden your spirit. This is not a trite statement, it can help you avoid despair. You loved them all, that is heard in your words. For you to care that much, they loved you too, they would want you to continue and be the person they loved. Dear One listen to them, they love you, Namaste
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