A place to talk death and dying issues
Comments
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Oh dear Calico...I think the very fact that someone wants to have a celebration of your life means you have touched others....and I'm sure that goes for our Blondie & Dune!!! I also think I've led a somewhat boring life...no world traveling for me, no fabulous career climber (my happiest moments were doing cartwheels with elem students as a recess teacher!), my kids traveled and I was ever so happy to live those trips through their eyes. In wondering what to write...just write from your heart....we can be assured it will be beautiful. Please tell them you have a world of sisters who've been by your side...oh dang...I hate this. I would be there too...for each of you...this is when I wish I'd had that climbing career w/Microsoft :-). Love, prayers, peace & more love.
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Hi, Dunesleeper, that's good about the Mass. Catholic? That's all I'm familiar with. Plenty of pre-determined ritual that you can slide right into. It's looking pretty good to me right now. I want to be immediately cremated, and my heart does not lay with Catholisism. My church, if I have one, is non-denominational. They draw from all religions. I love its eclectic qualities.
Nite nite and see you tomorrow.
xoxoxoxoxoxx
Calico
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I realize that many of you have probably discussed this subject many times, but I have not yet run into it on this thread which I have just begun to read in between days at the hospital and doctors offices:
How do you tell your grown children and (more hysterical) relatives that you are terminally ill and may not have much more time to live?
It has been hard enough calling and speaking to the more sensible relatives and friends, but I have been putting off telling my kids. One is in the midst of a series of exams and I do not want to upset him just when he needs to concentrate on his studies the most. The last exam is this coming Friday, but I found out tonight that he has a very important presentation the following Wednesday. It is something he has worked hard to put together all summer. My husband and I have decided we want to try to hold off until after that and tell both kids the weekend of Sept. 12th, if we can. We can't tell one without the other as they are so close and will need each other's support.
Tomorrow I will be given the results of a PET scan I had this past Friday and find out whether I have mets in my lungs, if chemo will help me a bit, or will I just be given palliative care. All this is a bit overwhelming as I didn't even know I had Pancreatic Cancer until the second week of this month, so about three weeks ago. I certainly know it now as I can feel it ache a great deal more and have to take Percacet every four hours for it, when two Tylenols used to manage the pain.
I just do not know what to tell the kids. I have already warded off several people who wanted to immediately come to "help" or visit, as I really do not want that to happen. I need peace and quiet with my husband to figure out what is happening and to plan for our futures.
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Hey there hort that is exactly where i am right now. My kids are 41, 34, 37 and the twins are 21. The twins r the ones that mlike with me, so they se the hospice characters that r in n out of the house. The nurses twice a week they want to raise it to 3 times a week. There is a nurse, social worker n a. Spiritual guide, ex priest who i have only been here 3 times, dont know what his issue is other thrn i am spirtual but not godly, n i dont like people talking to me about miracles, blessingsetc. , saying prayers.
I understand the there r prople that appreciate all of that bug i am not one of the, anyway whenhe comes he leaves the card in the dood, no doorbell, no knock no phone call, si i guess he id uncomfortable doing it ot juxt listening.
My older kids r just ifnoring me for the most part, they kmow about hospice, doesnt know what it means snd apparently no curious enough to ask. They know i dont have anything to eat n i qam not being taken care of by the gtwins.
I decided to have meetings wiith the girls separately i though it wiould b easier on me too do it that way, avnd then hsve anoyher one based on one n for some e reason they said no., has to do wyith school going back. Anyway i am starting my process of getting rif of things. I have a will n will b making another list witch honestly i asked my dil to com over hrre wherd i could go over it with her, she never answered me. I fell so alone, only child, deceased parents n auunts n uncles my children r it. I am defyinately finding out whom my friends r, who can handle what n not. Honestly i dony have the time or energy to figure out which is which.
People who i never would b there r so there front n center. My kids are going to b shocked n hsve no iddea what to do with themselves.so when u figure it out plz let me go. My hospice just renewed me for another three months
.calico, hort i wrap my arm arounf u hugging, which i can use especiall5 now.
Oh yea i don't want to dir from halloween til after newyears, how djo i control that, lol dont want to ruin the holidays
.
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We all will leave some mark and memories behind us, it is the seeming insignificant things that will be remembered I have a passion for funky socks, so I have asked my BFF to purchase both men's and women's and distribute as part of whatever else I decide I want. A basket at the back of the church or funeral home, everyone chooses on their way out and when they wear them, they remember me.
Just a thought, what would you want folks to have to remember you?
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Hi, to all,
I just spent quite some time writing responses to you only to have a server failure that cost me the entire post. DRAT! I don't have the energy to write more at this time, but I want you to know that I am thinking of you and will be back later today. In lovingkindness....
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Blondie - you should be able to ask them to stop sending the spiritual guide. Seems to me they shouldn't have sent him without asking you first. You shouldn't have to deal with that with all you have going on. Maybe your social worker or one of the nurses could help you get the message across. I know many people find comfort in that but I am not religious either and wouldn't care for it at all.
I was at my oncology clinic a couple of weeks ago for faslodex and xgeva treatments. While I was sitting in the waiting room some man with a name tag but no other identification walked up and said "what are you here for today?" I don't know if he was a chaplain or a volunteer, but it wasn't another patient just making conversation and it was really creepy. I found it very invasive and sent him on his way with a response of "I'd rather not talk about it". What I wanted to say was "because I'm f****ing slowly dying of breast cancer and I don't think it's any of your business". If he had walked up and simply said "would you like someone to talk with or someone to pray with you while you wait?", I wouldn't have felt as invasive and I would have simply said "no thanks".
Nel, I love the sock idea. I have always worn funky socks. I don't think I want anything tangible for folks to remember me by. I just want them to smile, or preferably laugh, when they remember me. That has always been a huge part of my life.
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Nel, I once planned to have cd's with my favorite music given to my closest family and friends, because they all know me as a music lover, but nowadays many people don't rely on cd's for their music. Now I plan to have my favorite poem given to them, in my handwriting if possible.
Blondie, I agree with Calico about asking your hospice social worker if she has ideas about how to expand your world a bit. Hospice programs are required to provide volunteer services to their clients, and you could be matched with someone who could visit on a regular basis. Some hospice programs allow volunteers to take clients out for a ride, others do not (for liability reasons). Also, have you considered having your hospice SW meet with you and your children to discuss concerns that are important to you as well as what it means to be in hospice, what services hospice offers, your needs now and in the immediate future? You are not required to accept spiritual care services from hospice. Have you been open with the "spiritual guide" about your beliefs and how you might just want someone to listen? Also, based on some of my past experiences, some hospice team members just show up without making arrangements before time. You have every right to let the team know that you prefer someone to call ahead of time or make arrangements in advance. I understand team members have challenging schedules, but it is reasonable to expect that someone could at least ask to come every other week on Tuesday afternoons, for example, or say they will visit two times a week, say on Monday and Thursday, in the mornings.
By the way, when my father was in hospice, the social worker and the chaplain had the habit of just dropping by without calling or scheduling ahead of time. My mother and father felt very uncomfortable with this, but would not say so, so I called the hospice SW and explained how scheduling ahead was more respectful, and they never had that problem again.
Calico, I have helped with planning Celebrations of Life. One person had someone read "the story of her life" while a dvd showed photos collected over her lifetime. Another focused on her ethical will, sharing the values, beliefs, and life lessons that had meant the most to her. One woman, a quilter, arranged to have her favorite quilts on display, with each quilt next to a story of what the quilt had meant to her. Just a few ideas. I hope you will find peace of mind while planning it and afterward!
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Hortense, I've got a few ideas about talking to family members, and I imagine others do as well. First, with regard to dealing with "hysterical" family members: You might consider putting in writing the basics about your health status, responses to questions that you anticipate they might want to ask (as long as they are questions you want to answer!), and what your needs are at this time of your life so that it serves to set some limits on future interaction. You might consider specifically asking them to digest the information for a bit before reaching out to you. You also might consider asking a more grounded family member, one you trust and who might want to offer their help to you at this time, to be the one who breaks the news and serves as the "contact" person for obtaining information about your status, etc. in the future. I know that when I have more limited life expectancy, I don't want to spend precious time and energy taking care of the needs of "hysterical" or unstable family and friends.
Now with regard to your children. It's easier to say than to do, but try beforehand to do whatever you need to do to feel as calm and focused as possible. I don't think you should worry about hiding tears or your own emotions, because that often sends the message that the other person is supposed to hide his or her feelings as well, but of course, you don't want to feel out of control. In the beginning, keep it simple. You might even find it helpful to prepare them by saying something like, "I have some tough news to share," rather than trying to build up slowly, because a slow build up often builds anxiety. Give basic facts. Tell them you'd like to finish with the basics before answering questions so you can stay as focused as possible. Once the basic facts have been given, pause and give them time to absorb. Don't feel like you have to rush in and comfort them all at once.They may need a few minutes, or they may not. Ask them if they have any questions, and let them know it's okay to ask. Try to anticipate questions they might want to ask but aren't sure they should or might be too surprised to think of, and give that information (only if it feels right for you). Let them know how you have been absorbing the news and how it is affecting you to the degree that you feel comfortable. Take your time. Let them take their time. Let them know what it is like to share this news with them and how you hope that you all as a family will cope with the news. Try to remember that you don't have to have it all figured out, that having a plan just helps you to feel more grounded, and that they may react with questions you don't anticipate. Trust yourself to be as genuine as possible. And let them comfort you as much as you would like to comfort them.
I don't think I have all the answers, but I want to help, and I hope this is helpful. Take what you need and leave the rest! In lovingkindness always....
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Thank you Brendatrue. Your thoughtful advice is exactly what I need to figure out how to speak with my children. My brother will be another matter. He will go over the top in a nanosecond and pepper me with questions like - why didn't you tell me earlier? Were you trying to hide this? We are best friends, I can't believe you didn't tell me, let's go see more doctors, I'll hire a jet and we'll go to ...(name the cancer center), etc. Ugh. It will be exhausting and draining.
This afternoon I am going to the oncology doctor I have chosen to care for me until the end to get the results of Friday's PET scan and to find out whether some chemo might afford me a slightly longer or better quality of life as this disease progresses. I am scheduled for a port on the 10th and to start chemo on the 14th, but that could change today. I may be looking at palliative care only.
I just got off the phone with a sensible cousin who I had to tell as I needed information from him about our family for a genetic test I had done. It was nice talking honestly with him. I am avoiding my sister's calls as my husband feels she cannot keep a secret and I do not want my kids to find out quite yet. Not until after a week from Wednesday.
Blondie - If I were you, I would immediately - meaning today - nicely but firmly, insist that no one hand you religious pamphlets or speak to you about spiritual things. I would also take some of the good advice given above and look into any services available to get you out of the house a bit. Also, it sounds like you need to set up a serious heart to heart with your family, perhaps with a social worker to help you out. Perhaps she might call them to set it up.
Explain to them that such a meeting is important to you, that you do not have long to live and that you need to speak seriously to them. Goodness knows that speaking to one's family is hard to do. I haven't spoken to all of mine yet, but will as soon as two important dates in my son's work life pass as I do not want him to fall apart just when he needs to most be on point.
Good luck.
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Hortense,
With regard to your brother....Perhaps honoring and naming the intentions, beliefs and emotions behind his questions is a helpful place to start. Let him know that your diagnosis affects all who love you, certainly, but that first and foremost it affects you and you needed time to digest and adjust to the news before sharing widely. If he wants to take you all over the place for assessment/consults, you might want to acknowledge that it is hard for him to accept your prognosis but that you consider it to be your reality and that you want to spend precious time doing things that promote your quality of life (assuming both of those are true for you). If he exhausts you, tell him about the limits you have on your energy and ask him to be respectful of your needs at this time. If he has difficulty listening and accepting, prepare yourself to set limits on how much you are willing to talk and to go through the emotional turmoil of sharing difficult news with family members. When we face declining health, priorities shift and we let go of habits or worries we once had that no longer seem meaningful or helpful. Be as clear with others as you need to be. You can do so with respect and empathy. Ultimately it is the other person's responsibility to cope with what he or she does not want to accept; it is not yours.
Hope your MD visit gave you useful info today. Thinking of you and all the other folks who hang out here.
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I had dinner with ome of my daughter n we tslked a bit
The ez priest came also, n yes pushing the god thing told him that i have other thing i do. He was good with that, its like nobody has ever talked to him like that b4... he will get used to it. He was fine, he spoke with one of the twins, spoke with the nurse, initially she told me hospice is 6 months or less, told her dont want to die until after the holidays , like feb is good, she says she thinks hi am good til feb.... makes me feel little bit better grt more control over the kids thing.
Love u guysifi dont tell u enough im sorry, dont know what i would do without u.
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Looking for solace this morning, I found a simply stated quote that is profound:
The last of the human freedoms--to choose one's attitude in any given set of circumstances; to choose one's own way. Viktor Frankl
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That's a nice quote Brendatrue. Here is one of my favorites. It is from message from Joan Baez's mother, who was also named Joan Baez, shortly before her death:
"When I Join the Heavenly Band"
"Friends who want to celebrate my new adventure, please gather round. Don't grieve, for it's only a worn out body that's leaving and the memory of any sad times goes with it. The good memories are in my spirit and my spirit is with you today. I'm in your midst, for there's nothing more valuable to me than to be with you, my beloved family and my gracious friends.
"Take a moment for silence and wish me well. I'll hear you. Then make the bottles pop. You know I love champagne almost as much as I love you!"
"Big Joan"
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Sarah, I love that quote! Thanks for sharing it. My inspiration for the day comes, at least in part, from:
Use the talents you possess, for the woods would be a very silent place if no birds sang except the best. -Henry van Dyke, poet (1852-1933)
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It must b my add i never get quotes or poems
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Brendatrue - such good advice. You sound like a very sensible woman. Thank you. I may do exactly as you suggest.
I had no idea that there was so much to think about and plan for when one is terminally it. It is quite surprising. Take magazine subscriptions, for one. I suddenly realized that mine are mostly on automatic renewal and that if I didn't change that my poor husband will continue to get all of them for years after I am gone and have no idea how to stop their delivery - he's not computer savvy. I don't want him painfully reminded of me every time House and Garden, etc. show up in the mail. Yesterday I managed to switch them back to paper billing so that if they are not paid for they will be cancelled. I didn't want to simply cancel them as I would like to keep on reading them as long as I am around.
I also went to the funeral home yesterday to look into my options. Lots to think about there. I have no clear idea what I want. At least, I have picked out what I want to be dressed in at that point. So, that's something. I got both cars serviced yesterday and I am beginning to stock up on basic household supplies so that they are on hand when I start chemo in a week, and for when I get sicker and am not able to go shopping. I would like to make what's coming easier on my husband in any way I can.
Blondie - I have ADD also. It runs strongly in my family on my father's side. My daughter takes medication for it which helps her focus more effectively at work, but I never have.
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Hi Ladies, it's been since Jan that I've posted on BCO. I've recently come back around after literally trying everything: chemotherapy, radiation, naturopathy, homeopathy, alternative therapies, diets, lifestyle changes, juicing, pot, infra-red sauna therapy, you name it, I've tried it. And I'm exhausted. Recently, my port got infected, and was likely infected for some time, before I got to the hospital and had it tested and removed. I'm not putting a new one back in. I had sudden pain onset and the cancer has spread greatly. I start radiation to the brain today, for the 3rd time, and then Doc says its day by day. In the two years since I've discovered I am stage 4, I have tied up a lot of loose ends, paperwork, getting rid of stuff, Will, POA, etc.. I'm still living on my own as a single woman, my kids check in on me, take me to appts.. However, I feel like I'm on the downhill slide now, and I really don't want to live like this, in pain, just existing. Nothing interests me anymore. It's all I can do to get through each day. I don't want to linger, I'm done fighting. I just am, until I'm not anymore, I guess. But, with my luck, I'll still be around for awhile, for some reason I have a stong constitution and sense of fortitude. And that's what keeps me getting up. I hate this disease and what it does to everyone affected by it. I wish they could find a cure and heal us all. Namaste, T
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Hi, Sky, Just to say that I hear you and it is so weird and yucky, so real and powerful to be dying of cancer. Big hugs, Mame
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Sky i agree with u saying i am dying is strange. I am going through. Things making lists eho goes to who. Trying to get my peeps realize things arent changing no miracles, as my granddaughter thought. i am not ready yet, no dying around holidays, february is good...we will seeq
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I'm sorry Sky...I'm glad you've let us know so that we can maybe just let you know you're in our thoughts and prayers. Every day I want to scream to the world that no one understands the magnitude of people living and dying with this disease. It's so hard...peace & love to you.
Blonde...you're always on my mind...my daughter is also Blondie...inked on her back. Love & hugs.
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sky lotus, many prayers for you.
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Hi Mame, I saw a cartoon graphic with a headstone that simply said: "that was weird." I thought it was funny, but I wish to be cremated.
Hi Blondie, I remember you from when I used to post, glad you're still here!
Hi Ronnie, I remember you too! Glad you're still here too!
Hi MrsM, I remember you too! Thank you for your thoughts.
Back in Jan I started naturopath treatments alongside the two chemotherapy regemines I was undergoing at the time. I was literally in a BarcaLounger 4-5 times a week. It was too much everything cancer, so I stopped lurking for awhile on BCO. Some ladies checked in with me on caringbridge, and I really appreciated that!
I quit all chemo at the end of March, and then all naturopath IV's at the end of June, they weren't working either. My TM's started to climb, the disease spread greatly (I get scanned every 2-3 months, PET, brain MRI and CT), and my port got infected, requiring hospitalization. The doctors kept saying to me I'm too young for this. I had to try and sit in the acceptance of that. It's not easy.
I'm now going through radiation to the brain for the third time in a year and still fighting the infection with heavy duty antibiotics.. I have a lot of pain in my back, hips and pelvis region. Bone pain. It's really no fun. But, I keep getting up. That's all we can do. And I try to find something to LOL about every day.
Sometimes I think it's the longest, slowest, most dragged out way to die. And there are even times where I wonder if some people think...she's not dead yet?! LOL! (Not really lol) But, it's my journey and no one else's, and all I can do is live the life I have, the best that I can, under these circumstances. That's all any of us can do. With grace. Thanks for your words and thoughts....
Namaste, T
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Skylotus - keeping you in my thoughts and prayers.
Hi Blondie.
Calico - How are you?
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Skylotus, Blondie and Calico Gentle hugs and prayers coming y our way
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Skylotus, Blondie and Calico, you are in my thoughts and heart. Fond love xx
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Skylotus, Calico, Blondie, and Hortense, reading your posts broke my heart. I am afraid in a couple of years I would be in your shoes. So you are not alone. In a sense, who is not dying a slow death? We all do. Everyone does. Very much hope you have a better day today, not painful, not lonely, just full of grace. I am a relatively new metser, but you are in my thoughts. I wish you all the best.
(-- edited typos.)
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Hi to all. Thinking of so many here that I fear a list of names will leave out someone important, so I will resist recalling names today. SkyLotus, your experiences do sound incredibly exhausting! I know for each of us the threshold is determined individually, but so often I hear people sharing how they've just had enough treatment and cannot bear living in such an exhausted state anymore while managing treatment side effects. It often brings us back to the quality of life issue as well as how do we decide when enough is enough?
Xavo, I understand your question, "In a sense, who is not dying a slow death?" My immediate thought is that some people are doing that every day while they are fully invested in the process of living and in more or less healthy bodies, although others are doing that every day while dealing with significant losses that often occur at breathtaking speed and with awareness that the finite quality of life is now more real and not just an abstract concept. And not to minimize the impact of knowing one is dying as one is living, my next thought is related to this quote from Terry Pratchett: "Your whole life passes in front of your eyes before you die. This is called living." That quote brings to mind, at least for me, the importance of being mindful as one lives and as one is "more actively" dying (and yes, we could have an interesting conversation about what the "active dying process" is all about...). So, how do we choose to be more mindful while living/dying? What works or doesn't work? I'm exploring that day by day, and I hope I have a deeper understanding by the time I leave this world.
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Sky, Calico, Hortense, I'm thinking of you all today and wishing you well.
Hortense, I hope your talk with your children went as well as it could.
Namaste Sky.
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Skylotus, Calico, Blondie, and Hortense reading all of your posts is heart wrenching. I pray for you and for all of us. Xavo I agree that we are all dying a slow death, but a metster can truly understand what we all go through and/or what we will eventually go through.
Brenda beautifully said. I just wish I had chosen to be more mindful before breast cancer. I've often questioned why it took something as devastating as this to open my heart and to live more the life that I was meant to live.0
