A place to talk death and dying issues
Comments
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Linda, dear one, found this on the way to find the other thing.
Jan 31, 2013 03:44am sas-schatzi wrote:
Reposted from novenas: Linda has just had notice that she has mets to the cervical spine. Linda's prayer was countinued on the last novenas at the end, specifically b/c it was a beautiful prayer. Don't know if anyone caught that, but as the keeper and recorder of the last few novenas, I had control over how things were recorded. I kept Linda-n's intention and prayer as the last to be said. Now she needs us.
Linda-n3pb:
Thanks be to God for each moment of grace that comes from His love every day, all day.
Thanks be to God for the opportunity to share His love every day, all day.
Thanks be to God for the courage and strength to carry out His will for us every day, all day.
Thanks be to God for those who have gone before us, have shared their love with us, and showed us how to live the way Christ asks us to live.
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Bonnie you to are in my heart, the system failed you. Your need of care is great. The medical system messed up. Mayo world renowned, in my estimation and those that know you failed. BON'S BAG will benefit others long after you are gone . Just as MA111 thread has benefited because you took the leadership to carry it on. God love you babe, I loved our talks. I love you sheila
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Sheila, thank you so much for your posts. My words come back to me when I needed them most!
Good news is the meds are working! Less intensity in almost all involved areas. C spine shows healing!
Namaste and Shalom (Peace)0 -
Linda, so glad the meds are working. May they continue to do so for a long time.0 -
YAY Linda, and Yay BON.
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Bon, I think you are very right about "getting used to living" again. Sometimes I get so used to the idea of dying that I forget to pay attention to the "here and now" and all the love and beauty around me. So it is good to be reminded to live in the moment!0 -
I'm having a pretty hard time right now dealing with the prospect if dying. When I was first diagnosed last January, I was very pessimistic and thought I'd die in a year or so. Then I talked to my MO about it, and he said I could expect to live for several years, since the cancer was only in the bones. He said there were several hormonal treatments and then we could go to chemo. He put me on Faslodex. Then I felt quite optimistic and thought I might live 5 years or so. Well, now the cancer has spread to my peritoneum and I'm on Aromadin/Afinitor. The MO says the next step is chemo. Again, I feel like I'm going to die pretty soon, and I feel more upset than when I was first diagnosed stage 4. I'm having a hard time making myself do anything, and just want to stay in bed. Any advice on getting through these feelings and becoming more at peace. I'm not religious, so prayer won't work.0 -
Mary, I agree with Bon about getting an anti anxiety or anti depression medicine. I take a mild dose of an anti anxiety med and it helps me cope on a daily basis. Before that, all I could do was sit on the sofa and tremble. Literally.
Also, think of something that you truly love to do and do it. If you want to go out shopping and buy yourself a beautiful necklace or sweater, do it. If you want to sit around watching reruns of your favorite comedy TV show, do it. When I was doing radiation, I bought a big screen TV as a treat to myself for what I'd been through and it made me feel good. I liked watching TV on it. If there is a restaurant who's food you love, then go there and order, or get take out. Sometimes for me, taking a drive to see beautiful scenery, the water along a lake, an Amish countryside, those things helped lift my spirits.
You have to be very, very, very good to yourself. Spoil yourself. That's what I did and continue to do. Before bc, I had a habit of being the 'mature' one and always allowing others' feelings and desires to trump my own. Not any more.
Also, I started to make plans for a couple weeks out, like to go to a movie that I really wanted to see with a friend. And to go to a concert with my husband. Think of stuff you may have been putting off but always wanted to do, and put some of that in action. Take one step at a time. Do one simple thing a day. I also started keeping a calendar on my bedroom dresser, and most nights, I will write one simple sentence about what I did that day. Chunk things down, live in the moment, and don't project yourself too far ahead.0 -
ditto what mrs. M said!0 -
Thanks, Everybody, for the advice. One problem I'm having is that I feel guilty. My husband has to do more of the household work and we're spending over $900 per month on my drugs. When I die, he'll no longer have my social security or retirement money. Any, of course, he'll be left alone. I'm afraid he'll turn into a hermit. I don't want him to be a poor, lonely old man. We both always thought he'd go first, and I thought I'd be there to take care of him. Now I don't know what will happen to him. I also worry about one of my daughters and her children. She's very emotionally dependent on me, and so are her kids. She has lost her job and if she doesn't find another one soon, we'll need to help her financially. That $900 per month could go a long way toward helping them. I don't know what will happen to them, either. And then I feel guilty for even feeling bad about all this when I read about the young mothers on this board who have to face possibly leaving their young children without a mother. Some of you may be in that situation and I apologize for being such a whiner.0 -
Mary, no need to feel guilty about whining. This is the perfect place to do it and we're all allowed!! I, too, feel so sad for the younger women dealing with stage IV. Once upon a time I thought I would be leaving mine behind and it was a sad time indeed. So glad I didn't leave my DH to be a single parent. Me would not have been good at it! LOL! We need a CURE!! Damn cancer!0 -
Thanks, Glenna and Bon. I would love to move my daughter and her family in, and we do have room for them. She is feeling like such a loser right now, and trying to avoid what she sees as an admission of that. She said if she doesn't have a job by Christmas break (the kids' school break), she'll come here. Unfortunately, she sees that as an admission of failure. My DH and I have told her over and over that we all need help sometimes, that that's what families do, that we want her to come, and that we could all help each other. The kids want to come. As for the meds, I don't think we qualify for help. I looked up the card that you can print out, and you can't get it if you're on Medicare. The pharmacy has an assistance program, but we make too much money. I'm going to call the drug company, though, and see if there's any assistance that I've missed.0 -
Thanks, Bon. I agree with everything you said, and I sure hope they'll come back here soon. She could even go to school for awhile and retrain if necessary.0 -
Ladies, thank you so much for the information and keeping the post going. I have been struggling with death myself but I think I am overly consumed....how do I know when it is your time to call hospice (no signs of anything close to that now, just overly curious), how will I feel, how do I make sure my husband is ok and the rest of my family and on and on. Every ache and pain just increases my anxiety over where I am today to how long will it be before I live with out more assistance.
I have found it has taken me a while to get through these pages becasue there is so much useful information. Last Sunday at church the message was about the legacy we leave, what would our final words be and how do you live the dash between life and death...that was an emotional day at church but all very interesting but only increased my need to know things. Someone had posted they just want to talk to their family but their family keeps giving her positive reinforcement but doesn't want to actually talk about the dying portion. I am in that same boat....I am on round 2 of chemo, I ended round 1 in January and started round in September (one year after I started the first time) and know chemo is the only thing that will work for me so I will probably be given breaks here and there but will probably be on it for the rest of my life according to my oncologist. I have an amazing support team but no one has really been through this with any of their friends or family so sometimes when I just want them to listen they don't know how and the conversations don't just flow. This thread has been exactly what I needed today. Again, thank you!0 -
Sherbab, I am also not ready for hospice yet, but did talk with my PCP about when to call them, and she said it is never too early to at least call and find out what they offer. There are many hospice providers in my area, some areas have fewer, some have more. Only one hospice here has an actual facility where you can be admitted for pain control etc., and one has a hospital unit (not the same type of environment as the other hospice, but even though it is still in a hospital environment, it operates as hospice does), and there are several that provide home hospice services. So my PCP said it would be good to talk to some of them and compare, see which I am comfortable with, so when the time comes, the decisions won't be made in the middle of crisis, but rather will have been made rationally when there was no crisis at the time. I DO have a palliative care specialist (my PCP is certified in this also) so that is especially helpful even though I am not ready for hospice.
MaryLW, I just saw a special on public TV on how pharmacies charge for brand and generic drugs, especially for cancer drugs. I don't know if your meds are available as generics, but I think the pricing policies may be similar for both generics and brands. At Costco, they price the generics by taking the wholesale price and adding a small markup to cover their costs. At Rite Aid, CVS, Walgreens, etc, they take the price they charge for the BRAND drug, and reduce it by some percentage. As you can see, these are vastly different approaches, leading to a vastly wider range of prices!!!! So call around to pharmacies and see if you can get a better deal on your meds!
Bon, my dad was like the one who needed those extra words whispered to him at the end. He hung on as long as he could, until my mom told him it was OK to go. All of us except her had told him that, but I swear it took HER telling him that for him to die.
DivineMrs, I am right there with you on doing things you want to do! I am unable to play the music that I want to play (I used to play French horn in orchestra and band, but with LE just cannot manage it, and playing piano is kind of out because of the peripheral neuropathy pain), so I am replacing that with art. I am taking lessons in abstract acrylic painting - it's great because we work on large canvasses, I am using my left hand because the work is so different, uses large brushes and other instruments to apply paint, and it is something that comes from deep inside our emotions. I went to the opera with a friend a few weeks ago, and am planning on going again in January with her (neither of our DHs ar interested!). I am planning on getting tickets to see "Wicked" with my sister in the spring when they go on sale. I am learning Zentangle, a wonderful mindful-based "doodling" that produces little tiny abstract art.
I don't know if I shared this here or not, but in a moment of completely not using my brain to think before I spoke, I invited my entire family to my house for Thanksgiving dinner. There will be about 20 or so people coming!
So, everyone has been assigned their "signature" dessert to bring, my mom and one sis are coming a few days early to do the turkey and vegan turkey and sides will be limited to potatoes, gravy, dressing, and roasted root veggies as the starch options, brussels sprouts, green beans, and crudite for the veggie options, and 4 signature desserts. I had an evil thought of having the whole thing catered by our local Indian restaurant - thought better of it as my family is filled with turkey-lovers, except the 3 or 4 vegetarians, 
OK, so while the family is here, I am providing rolls of masking tape and marker for them to label anything they want after I am gone. No guarantees they will get it, and if several people want the same thing, well, it will be up to me; no hiding of labels as that will for sure get you disqualified. I can see that my house will be covered with labels! It is kind of a standing morbid joke in our family because my grandmother had labeled her things with names before she died, and after the funeral, my siblings and I all went around my mom's house and put labels on things (she is still finding them once in a while, and this is 20 years later!), so it is really a standing family joke and I hope it will be all in good fun because I am really looking very good, hale and hearty right now, and that is how I want to be remembered - the crazy aunt who had a lot of fun.
Wishing you all moments of peace and beauty today, keeping you in my heart.0 -
Tomorrow I go to sign my new will, power of attorney, trust, etc. documents. Given the diagnosis, and our first grandchild everything needed to be redone. In my will I'm leaving money to my nieces and nephews.
That's background so say that I needed to (wanted to?) write a note to each niece/nephew telling them I want them to do something FUN, and one to my step-son & wife about the money for the grandchildren. The notes get stored with the will and sent along with the legacies. I didn't realize it would be so HARD! I love them all, and they'll be receiving this letter from "beyond the grave".
90 minutes and three crying jags later it's done. So glad my husband left the house so I could do it in peace.0 -
As for when to enter hospice. I made the decision to stop chemo. So I decided to sign up for home hospice. It's great! It makes pain management so much easier and they come to me. I only have them come once a week right now. You also have someone on call 24/7. No waiting for a doctor to get back to you. My hospice nurse also met me at the hospital last week, when I was having some spinal injections done. I Don't plan to check out anytime in the immediate future
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Pajim, I'm sorry you've had to go through such a difficult process, but it probably let's you be more at peace. My will and other paperwork are finished, but I haven't decided whether or not to write letters. That's still hanging over my head. Have you stopped active treatment?0 -
Good for you OBXK, no more doc appts or chemo! love reading your updates. Xoxox Jo0 -
Hi Mary, no, I'm actually quite new to all this, and I'm doing just fine. But once our grandson was born we needed all new paperwork. The lawyer said she would store and distribute any letters so I figured I'd do it now. I can replace them any time in the future, but I like to plan ahead. No time like the present. Who knows what the future will hold?
I do feel like one hurdle is out of the way.
OBXK, good for you!0 -
OBXK, sending lots of hugs and love. You have been through so much, we joined BCO within a few months of each other; I started out as a stage II (although I think the MO staged it lower that it actually was to get me to be more aggressive in treatment), took the fast track to stage IV. I am so glad you are finding hospice helpful, and so glad you are getting into it sooner rather than later - they can be so helpful.
Do you need to start a thread to support you? Several others have done so, keeping us updated as to status, and we are there to support every day. I am not saying you SHOULD start a thread, just letting you know it is an option.0 -
I came across the following story, "Embracing Life and Death," on NPR this morning. http://www.npr.org/blogs/13.7/2013/11/19/245996903/embracing-life-and-death
The story includes a video of Philip Gould, diagnosed with esophageal cancer, and his experience of being in what he called the "death zone." Watching it was a powerful experience for me, and I thought it might be an interesting experience for others, too. Adam Frank, the author of the NPR story, asks these questions:
"In the face of that inescapable truth, what else is there to do but remain true to ourselves and stay radically open and deliciously curious?
Through sorrow and joy, gain and loss, we can always keep asking that one question: What is it like to experience this life right here, right now?"
In musing over this story and the video, many thoughts have fluttered through my mind--thoughts of the value of mindfulness, compassion, living an authentic life, how to live among hope and grief and apprehension and a whole array of other emotions, being at peace with my body, resilience, the bonds of love, the misconceptions around "letting go" and acceptance--and that's probably just the beginning, because I will continue to muse over this interesting story and video.
I started the day wondering how I would have the energy to do what needs to be done, and now I am even thankful to be aware of the fatigue (not the fatigue itself) and of how I might cope best by being as fully present as possible in one moment before thinking about and moving into the next moment.0 -
Brenda, thank you for sharing that. Many things rang true, but others have left me wondering, questioning how or why. Like, the moment of death being described by a loved one as bliss. I am not making judgements, I just don't understand that. I do see how death can be compared to birth. I have been there in those last moments and it was so peaceful and moving. Maybe that's what she meant by describing the bliss.
"In the face of that inescapable truth, what else is there to do but remain true to ourselves and stay radically open and deliciously curious?" I really like this quote. Thank you again for sharing. I finished my will, directive, and poa's this week. I talked to the crematory and got all the paperwork done. I have an appt on Fri to look at a possible place for a memorial. Monday I will meet with the attorney to get started on a trust. Somehow, this is all helping me with my acceptance of the road I am heading down. Of course, it brings out my eternal need to be in control and make sure everything is ok for my family. Staying true to myself, I suppose!
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Bon, I got a bit of a chuckle out of the caskets. Personally, my DH has agreed that I will go in the minimum required for cremation, although I would much prefer a big funeral pyre just for fun. I love big bonfires!
Brenda, I haven't watched the link yet. Not sure when I will feel up to it. Mostly I am feeling a bit of a split personality these days, part of me just tired and wanting to accept things and go on quietly, the other part of me gets that military fight attitude that makes me want to push past the fatigue and SEs and go down fighting. The thought recently crossed my mind that maybe I have done all I have been asked to do in this life, and maybe I have earned my rest. And then I look around and see so much that I still have the desire to accomplish and learn and see and do, then wonder if it is even important that I do any of those things.
My biggest worry is DH - men don't make friends as well as women, and he is truly without many friends. I keep praying that one of 3 or 4 potential opportunities open up for him as that would allow me to leave with the belief that he will be happier than where he is right now. I can hardly bear the thought of him without me - I know that I have been his best friend for only 35 years, wish we could make it to 50 or more.
Romansma, you are moving right along on the checklist! Good for you! I got much of the basics done last year, but want to fine-tune my will a bit and create a file for DH with all the information that he will need. I really really really hate paperwork!!!!
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I don't mean to be rude or anything, but I have noticed in my small town that a number of men who've been widowed in the past couple years have moved on and have girlfriends. One even remarried less than a year after his wife passed away. Of course, that fueled the gossip mill in this small town. I really don't worry about my husband. I know it will be difficult for him, but he's seen his mom and grandma bury their spouses and move on and live a good life for many years afterwards.
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TheDivineMrsM, some men just cannot function without women. Also, when my best friend died of ovarian cancer 13 years ago, MANY single women in their CHURCH were VERY "helpful" to her husband, even before she died. They constantly offered help with things HE needed, but very little to help HER. It was appalling. He has not remarried, is quite content even though he still misses her, and he was not actually oblivious to those flirtatious advances, but actually disliked them. I don't think you are rude!
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Yes, Linda, it's true. The reality is the some women troll for men like that. It's good that the man you mentioned was aware of what was happening; many men are clueless about women's motives, especially if they've been married for years and have forgotten about the feminine wiles.
A friend's father-in-law lost his wife and another woman (I believe from church) moved right in on him and they eventually married. While they get along, they are somewhat incompatible in the she's introverted and he's more outgoing. That holds him back from more of the activities he'd really like to do. My friend told him, "she had her radar out for you." Had he taken it more slowly, and been more aware, he might have made different choices.
A neighbor lives directly across the street from us and his wife died unexpectedly less than two years ago. As a couple, they were antisocial. They didn't get along with anyone in the neighborhood, stuck to themselves. They didn't answer their door. Recently, we've seen the man with a woman who's undoubtedly his girlfriend. We were surprised, but my thoughts are 'good for him'. It's weird, but I think, well, my husband sees that neighbor moving on, and it's kind of setting an example that you can get through the loss of a spouse and move forward.
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My mother always said that if she went first, my Dad would marry the first woman who delivered a tasty casserole. As he slipped farther and farther into dementia, it became obvious that he not only loved my mother, but was incredibly attached. They bickered so much that I had always assumed that on some level they stayed married "for the kids." Nope.... not the case at all. And yet, he would not have stayed single for long. He was a total sucker for a well-cooked casserole.
This is my first Christmas without my father. I would be very surprised if my mother ever dated, much less re-married.
*susan*
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Interesting. Not sure if my husband will move on, but I'm sure there will be plenty of possibilities as single women have radar for men like this. My bigger concern would be how my kids would fit into that equation. I think my hope is that he waits till my youngest is off to college..........
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My mom always told me that women grieve alone, while men grieve with their new wives.
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