A place to talk death and dying issues
Comments
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Rosevalley, yes, you phrase that so well, the idea of "sowing the seeds of expectation" that loved ones should/need to move forward with living life. (I've told my husband I don't care if he starts dating the day after I'm buried!) My son is in his early 20s and I most certainly want him to live a full life even after I'm gone. I just know the first couple of years will be a difficult transition. Over 15 years ago, I lost both my parents about 9 months apart when I was almost 40. I can stil remember their funerals rather clearly and found them so meaningful as I began my grieving process, which lasted several years. I didn't get stuck in the grief, but there was that period of grappling with the loss.
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While grief pops up now and then, unexpectedly, I have mainly found my grieving to last a year. Every first bithday, anniversary, holiday without that person has to be gotten through. Then it gets easier.
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This is a good conversation. Mom and I will talk about some of this when I feel better. Whatever will be most comforting to her is what needs to happen. There are some things I can do for me, but she is the one left with the hole in her heart.
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DivineMrsM- if you were close to your folks it must have been a hard loss of both Mom and Dad so close together. When my Dad died I was relieved and didn't grieve much. We didn't get along. When my Grandmother Mimi died, I was a young adult 19 I think. I had nearly no emotion finding out she passed. It took months before I could cry for the sorrow and pain she endured, which was horrendous. All of us were soory she was gone and missed her, but couldn't bear to watch the pain she endured.
Many times I feel badly and guilty for my 14 year old because I get so grumpy because of belly pain and back pain that I am just a witch to be around. I can't do the things I used to do and what I can do wears me out. It makes me sad to have her stuck here. We did so many things with my other kids at her age. She is short changed truly. I feel guilty about that and would like her to have a Mom with energy and vitality who wants to go to the State Fair and ride the rides.. I would end up in the ER. The County Fair is this weekend and she saw the banner today and looked hopefully at me. Can we go on the rides? She asked longingly... I feel like her life is on hold until I am gone. When I leave then she can stop worrying about me and go play like any 14 year old. Besides I am sick of feeling shitty and trying to fit life between pain pills.
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Thank you for all of the wonderful comments. Brenda- I thought it might be a bit of anxiety too. I am not on any type of anti-anxiety meds currently. The thoracentesis did help again, but I am hoping it will not come back after two weeks again.
I just found out today that I was approved for Ibrance, so I feeling pretty good about that.
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I'm so sorry Rosevalley. I can feel your unhappiness. Just wondering if anyone could be a companion to your daughter so she could go to the Fair. I know it is short notice and don't know what it would cost. It was just a thought. Anyway I wish you a good weekend without so much pain. I'm really feeling for you and your daughter.
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rose ,,- you've put into words what I've been deakingbwith
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rose ,,- you've put into words what's I've been dealing with. The whole their lives will improve when we are gone because they won't be stuck in the house all the time. Maybe a steomom can do all those things the kids deserve to do it can't because I can't. Ugh. T
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Patty and Rose, I don't have children. And as miserable as I feel and as poorly as I'm handling it, I would take it from you so you could have the kind of family life you want. It's particularly rotten when ladies as young as you get it. I pray there is a trade-off, a deeper appreciation for each other and an acceptance of the sometimes rottenness of life, perhaps. The gift might come in a bitch of a wrapping, but hopefully there is a gift there somewhere. It's ok to smack me now.
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Yo, dear friends and fellow travelers! My DH and I left overnight to Saratoga, a sweet town in the hills above Silicon Valley, to see the Indigo Girls at the Montalvo Arts Center. Anyway, even a little trip takes a lot of effort now. On the way home, we swung by Fresno and I got my 10th and last whole brain radiation (WBR). Of course, it's the last one THIS time. I have no doubt I'll be back to the RO again before I get to leave the planet.
Rosevalley, I hope "they" get off their BE-hinds and get the Ibrance to you! With all you've been through, they should send it by drone to arrive on your doorstep. I need to read up on the stuff to see if I should be bugging my onc for it, too. Now that I'm "done" with WBR, I'll restart chemo of Cisplatin/Gemzar on July 21st.
I asked the tech why WBR made me so sleepy and he talked about damage, not just to the cancer cells, but to the healthy cells as well, and my body reacting like a 13-year-old's that needs to sleep a lot as it goes through big growth spurts, except in my case, it's working hard to repair the damage.
I so appreciate the conversation that many contributed to about if or how we want our passing recognized, and how we hope our family members will deal with our passing. I whole-heartedly agree that I want my dear friends and relatives to be able to grieve if that's what they need, and then to move on with their lives with no grief holding them back from forming new relationships. My DH is 77 and in very good health. I want him to form a new love relationship. He brushes that off when I say that, but I do, and wanted him to hear me say it. He's too good a mate to linger in a state of widower-hood for too long, and at his age, likely won't have a lot of time to be in a new relationship, so I hope he finds a good woman to love and who loves him back. He so deserves it.
My DH has asked me to write my obituary, and I'm very happy to do that. I'm leaving it entirely in his hands as to whether or not to have a service to recognize my passing. What it's called or how it's conducted, or having one or not, is up to him entirely.
My mother raised me with a love of genealogy and wandering through cemeteries, thinking about the people and the lives they lived. We have several family plots in Louisville, KY at an historical and beautiful cemetery called Cave Hill. My headstone is there, waiting for my DOD. I don't care what happens to my cremated remains, but I hope DH remembers to call Cave Hill with my DOD.
Love you all!!!
xoxoxoxoxoxox
Calico
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Calico- the concert sounded super, nice area to see it in too. I am glad you went and stayed awake enough to enjoy it! So your WBR is finished yay! Now you just need to rest and sleep until your brain recovers from it. I hope it works for you and the chemo is doable. Age is so relative when my Dad died at 74 he was a train wreck! Sounds like your DH is in great shape at 77. My DH is fit and healthy and just 56. His Dad lived to be 91 and most of the relatives on his side were well into their 90s up to 104! Good Scottish genes. He will have a good 30+ years easy! Longer then we have been together 29 years total. The stress of this entire BC thing isn't good for DH's health.
Patty yep when you have young kids at home and middle/high in particular they are active go do beings. When you have as many issues as we have the "active get out and power through the day" ain't there anymore. It's nice to know you get it. It sounds so pathetic to wish yourself out of the picture but when your 14 year old asks you several times a day - "you ok?" Then you know she thinks about it. It weighs her down and makes me feel badly. Thank you for sharing that you understand the emotions.
Dune just because you have no kids doesn't mean your life as a single woman isn't just as valid and meaningful as any other person! I appreciate the empathy. I understand feeling grumpy and icky with chemo. Hopefully there will be better days ahead for you and long periods of stable and skating!
Hopeful34- YAY you got Ibrance! Swallow it quick and keep us posted on how you do with it. The SE sound very doable.
My onc keeps saying I will be allowed to try it.. havent seen it yet. After I specifically requested they test the ascites fluid to see what cancer cells were in the fluid, it came back ER+ 100%, PR+70% Her2neu came back 2, so they sent it for FISH. Results not back. I had been 0-1 prior and that makes it negative. If this comes back Her2+ then they will cancel Ibrance and I will head for hospice. I will not consider taking herceptin and all with all the cardiac crap I put up with. My last PCP visit, my HR was 123 just sitting there quietly and no stress, no coffee.. my heart has been through the ringer. I will not tax my heart with any more crap. So if the reason I am not getting the Ibrance is because we are waiting for Her2 status and it comes back + then its over. I found a very nice privately run hospice place in the country with gardens... if insurance pays then it's a go.
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Rosevalley, Sorry to intrude on a stage IV post, since I'm not stage IV, but I thought I'd share this article that I came across:
http://www.medicalnewstoday.com/articles/296525.ph...
It says how if you have progesterone receptors, giving progesterone may prolong life. I don't know if there are any clinical trials, but maybe you could get a regular doctor to proscribe it.....
Best wishes to you all.
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Flavirose, this topic is in stage 4, but Ma111 felt strongly that the info here was helpful to all. She encouraged all to come here.
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My thoughts r going through this sitting around waiting to die sucks, i am grieving. Grieving not seein my grandchildren grow up or the twins get married etc. i do want a celebration of life with all the bells n whistles, i deserve it, lol. They will grieve at their own pace in their own way for their own period of time. I sort of think they in some ways they have started. You know kids, with or without sick parents don't see them as humans, they just see us as moms.so being at a memorial service or COL. provides my kids with the benefit of meeting n seeing other people who I know but my family doesnt n what they have brought to my life a visa versa, i want that. I want my ashes spread in disney world (illegal) n on daytona beach n if they want necklaces then fine.
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Hi calico
Lover
Rosie
Good luck all on whatever u choose to do treatment wise. It will b 1 year 1 took myself off 7/20
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Blondie- (((((HUGS)))) Did you have a good time in Florida Blondie? Did you and Andrew get to know each other a little better? He will remember that for the rest of his life being 9 years old. He got to be with Grandma alone special and at the beach! I am sure being together with George was fun too. I am glad you got to go and I wish it was longer! I know when you have been as sick as we have, for as long as we have.. there is a slow acceptance that just seeps into your being. A funny "knowing" that prepares you for leaving. It is hard to watch the kids, that part just sucks.
I know I grieve a little each day for things. Like who will watch over all my gimpy old pets, give them their thryroid meds, take them to the vets, get flea meds on, separate cat disputes and clean up. sigh... They were supposed to go first.. oh well on that. I do kind of feel that my girls will in some ways be better off. Patty understood that. It will be hard at first, but then the healing can begin. DH will definitely be better off. It's a mixed bag. Then there is the free at last - get out of cancerland card for me... oh I do look forward to that.
The folks who are buying the cabin want a closing date in 2 weeks.. poor DH has made 2 trips..hours in the car. They want nothing in the cabin (lots of them sell furnished) what a spectacular pain. My agent might be able to get someone to just take the furniture and give it away. Oy.. fine. Less hassle. DH will take DD1 and DD3 to the fair tomorrow. They will have fun. They need to have a summer day at the fair. love to all.
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I can't even begin to try to respond individually this time! I don't think my heart is pumping enough oxygen enriched blood to my brain for that to happen. Ah, well, we do the best we can, don't we? We all have at least one thing in common or we wouldn't be showing up at BCO, but we are different in many ways, too. I know port removal/out-pt surgery is a teeny thing in and of itself to manage, but when it involves going off warfarin, which not only reduces my risk of stroke but also controls symptoms of that rare vascular disease I have, then those symptoms skyrocket, then my already compromised heart starts yelling even louder at me, then I have some lovely GI and urinary tract health issues from IV antibiotics...well a teeny procedure basically becomes something much more challenging. I'm still trying to get back to a fragile stability, whatever that means, because it changes from day to day. I imagine many of us try to figure out from day to day what we can endure and what we cannot.
I've been thinking about anticipatory grief, as in grief over things we anticipate losing, as well as grief over actual losses. People who have not faced chronic, life limiting illness or "terminal" illness (or severe injuries, etc.--you know what I mean) may not grasp what it's like to be in the process of dealing with grief over actual losses while also contemplating what is left to lose. I know it may sound superficial, but one of the ways that I work hard to avoid melancholy or debilitating grief is to remember what is still working well, even though that list is getting shorter, and to hold gratitude about that. Trust me, I'm not trying to be "preachy," but this is how I manage. Perhaps dealing with poverty and trauma from a very early age helped me to develop that coping skill so that I would be able to endure. Who knows? I just know that it has stuck. And I am certainly no Pollyanna. I am one of those meaning-making people who search for meaning and purpose wherever I can find it.
When I think of being a burden to others, I remind myself that I bring more gifts by virtue of being me than I do burdens. That may change; I don't know. I've known many people who have died feeling so guilty over being a burden to loved ones and I've known their loved ones for the most part to be more focused on the positive aspects of their relationships. Of course, there are those toxic relationships where there just is an absence of anything positive, and we can't forget the burden in that. My general belief is that we feel the most relief when someone dies when the relationship has been toxic or the dying person has been suffering intensely. My experience has been that most people have a wide range of feelings and reactions to the loss of someone close--and that if a person has a way of making meaning of their life experiences and a decent support system, that person will probably learn how to cope with grief over time. For most people grief has a way of softening over time, although it will likely intensify at certain times, too. People who care for us will hurt when we die. Perhaps that is almost too much for us to bear, especially if we think of it in terms of causing our loved ones to hurt. But living means dying, and losing means hurting most of the time. We can't control that, we don't cause that, it's just a part of life. Sure, we can offer encouragement about how lives might be lived in the future and hope that the legacy we leave will be such that lives will be whole again, but perhaps lives become whole again while still holding the loss and grief. I think that's more than possible.
Forgive me if I'm rambling. I'm grateful for all who show up here and try to share genuinely as well as support one another.
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Brenda- You are wise and your perspective is always appreciated. I learn so much from others perspectives and shared feelings. Even if they aren't what I subscribe to it helps me understand others reactions and comments - opens my head to other possibilities. I think your comment over relief when a relationship is toxic and when too much suffering is observed is personally true for me. I try to remain positive that I am contributing something to my family but my world has been narrowing dramatically lately and that has gotten me down. I spent most of my day laying down because it gets the pressure off my back and hip and or belly. Spending that much time in bed frustrates me. My DD3 and I just had a nice signed conversation and she was all annimated and happy. Dad will take her to the fair with her sister. I have put this post down and picked up again.
Can't you just have your port taken out in the office? I had mine removed in the surgeons office, wide awake. No pain and it was quick and easy. The assistant and surgeon and I talked about driving in Europe.. I had to remember to stay still that even though it was a nice conversation- he was working removing and sewing it up. I am sorry you have to to tapper off your warfarin. Why are they removing the port? It sounds miserable to have a UTI and all on top of everything. I hope once the port is removed they can get you back to feeling better.
Blondie I saw your post and am relieved that you are still in Florida.. geez I thought that was a short trip just 4 days. Glad Andrew likes fishing!
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rosie I am still here and will be til the 22nd unless I stay longer, at my step daughters house no beach pool in the yard but nothing else. Andrew went fishing tonight across the street in the canal....he loved it...he wants to stay until he goes back to school...
I will talk about it all the time, not scared I don't thnk I think I am scared about how it will affect others...I have people I want to see...trying to figure out who i want to come back as, lol....Don't know how long it will be, but hospice says it all.. I am not ready yet tho....
good night
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I was sure happy to see this article. So much incredible fool-heartedness, and don't get me started on Sarah Palin and her "death panel" allegations. The article says that a new consensus has been reached, but to me, the Medicare powers that be have regained their senses!
Medicare to Reimbuse Doctors fo End-of-Life Discussions with Patient
xooxoxoxoox
Calico
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Rose, my port had to be removed because my oncology RN botched access, punctured the catheter, and the darn thing started leaking inside my chest. An interventional radiologist removed it while I was under light sedation. He did not want to use the local anesthetic only route because of my heart failure status/ concern it would be too stressful cardiac-wise. I'm still dealing with some of the complications I mentioned but improving.
Blondie, glad to hear you're still in Florida and hope the good times continue. I'm relieved for you that you don't feel scared and I'm hopeful you'll be able to do what you want to do in order to have peace in your life.
Calico, I also was thrilled to see the news about Medicare paying for end of life counseling by MDs starting in 2016! I read somewhere that at least the powers that be are following Americans' interest in this area now but that it would have been useful had they shown real leadership a few years ago. I wonder how long we'll have to wait for physician aid in dying throughout all 50 states?
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Brenda, thanks for your insightful posts. Really good stuff there. Calico, thanks for sharing that article. Very interesting. Blondie, I hope you keep going like the energizer bunny. You seem well. As long as that is the case keep on keeping on. Meanwhile have a great trip.
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Brendatrue, your post on anticipatory grief is so insightful. I, too, try to look at what is still working for me and do not allow myself to dwell too long on what is gone. Although some dwelling is necessary, I think, in order to come to terms with things; to acknowledge the loss s not a bad thing.
Regarding toxic relationships: A while back, I remember learning that Eleanor Roosevelt, so beloved by many, did not get along with her mother-in-law, who was so controlling of Franklin Roosevelt. When the mother-in-law passed, Eleanor said she felt nothing. It was enlightening to find out that even a humanitarian like Eleanor could harbor bad feelings towards an important person in her life, and now I don't feel guilt any longer about hard feelings I have towards a family member or two. As the saying goes, it is what it is.
Anyway, Brenda, your post regarding loss and burden and acceptance is so well written.
Rosevalley, you and your daughter have been in my thoughts since you wrote of her wanting to go to the fair. Hugs and prayers for you, also to blondie and CalicoCat and dunesleeper.
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Hi, Blondie!!! Sooooooo glad you are enjoying yourself!!
Five years ago when I turned up Stage IV, I consulted with a minister I admire. I told him I didn't know what to pray for. He said, "When we die is none of our business." It rang true at the time, but not so much in the situation so many of us find ourselves now.
Divine MrsM, I went on a tour of the Roosevelt estate some years ago and toured the house. What was most notable was that Roosevelt's mother's bedroom was between Roosevelt's and Eleanor's (they had separate bedrooms). No wonder Eleanor built Val Kill and spent most of her time there.
xoxooxoooo
Calico
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I thought this young moms words were very insightful. It's important when you get to the "more" drop tab that it be read.
https://www.yahoo.com/parenting/to-the-mom-i-didnt-mind-making-uncomfortable-at-122768443256.html
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Divine- My 2 deaf kids had a great time at the fair and came back tired and happy. Their Dad looked a little toasted.. no shade and I did tell him to wear shorts! (he went in long sleeves and jeans..)Anyway a good day was had by all. They rode lots of rides, bumper cars and puky rides (what I call the things that swirl and twirl). I made fajitas and red rice and beans, onions, peppers and tomatoe...yum. We are stuffed. I can stand for a while but sitting just kills my left hip..ugh.. Nice to have my DD1 over to visit. She is so sweet. DD3 got her fill of rides with a ride band.
Sassy- good replies from that young Mom. Losing a child is just the worst because folks are so sad about it they don't let anyone talk. It's isolating. Even having a miscarriage when you wanted the child and were happy to be pregnant is a loss.. even early on. No one wants to hear about it. You just keep it to yourself. Feeling loss for what might have been and vanished. There was a lovely article in the NYTimes about stillbirths. If you haven't read it, do so, it's beautiful. During Nursing training in L&D (labor and delivery) one of the days I was there, there were 3 fetal deaths. One they knew already died/ stillborn and 2 would die shortly after birth because of catastrophic birth defects. It was all I could do not to bawl my way through the shift. The parents bought little outfits to say their hellos and goodbyes and teardrops were placed on the doors. I just couldn't imagine anything harder then to go through birth, say hello/good bye and go home empty armed. Talking about it only seems the very least we can offer the parents who have gone through it. Just be compassionate to listen- "Please tell me about your baby I want to hear about him/her."
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On another sad note.. our ancient old lady corgi /westie mix "Flower" has become incontinent.. Oy we wash bedding constantly, she gets up wobbles around and sleeps so soundly she wets herself. No one has the guts to put her down. Before my hip gives out completely and I can't take her to the vets.. I will take her tomorrow. She barks at 4-5am wakes us all up, wanders through the house lost, piddles everywhere she sleeps. It's time. She is almost 18, deaf and has poor eyesight. Ugh.. this is so hard. Sucks. We should have named her shadow- she follows me all day where ever I go... except she is all white. All day I hear the clickety click of her tonails on the hardwood floors. Sweet little old Lady.
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rose, bless you and flower
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Oh my goodness Rosevalley. Hugs for you. Hugs for Flower. It truly is one of the most difficult things anyone can do. My heart breaks for you.
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blondie. - sounds like you know exactly what you want as far as after death. I know you have taken the time to consider all this. I am on the same page as you with everything but the ashes. I don't want an ash spreading ceremony (,almost like a 2nd funeral to ave to endure ). Wonder if the funeral home where I will be cremated can dispose of ashes. Hmm. Anyone know ,?
Rose - oh my. It feels good to talk to another mom with kids of similar ages who can relate to me. You talk like I am looking in the mirror. My 13 year old boy asked st least 12 times a day - you OK mom - . No matter even if I am having good day he still asks. He has just seen the situation change quickly so many times ex: compression fractures, heart palpitations , pneumonia_ etc. I get it but it breaks my heart for him. Much earlier this year I was in and out of the hospital 7 out of 9 weeks total. I was extremely I'll and not sure I was gonna puill thru. I never told them that. It they surely felt it too. For quite awhile after that my 13 year old would get off the bus and be nervous to come in for fear e would find me dead. We discussed this at length many times to reassure him. I also wait on the porch for then now unless I just can't. Glad its summer break and I am feeling much better. Was so scared to have them home all D's in summer while I was so horrible and they would have to watch it. Luckily tats not been the case.
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