A place to talk death and dying issues
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I have an e.friend, someone I have written with daily for over a year now. We have come to know each other quite well on the written page. She has been battling pancreatic cancer and for quite a while was holding her own, but doing chemo every 2 weeks. 10 days of feeling like hell then 4 days of coming back to life only to do it all over again. This went on for over a year until she called a halt and had some experimental surgery. It seemed to help. Her hope soared. Then very fast everything went wrong again and she went from functioning well to being hospitalize in a matter of days.
She is back on the chemo every 2 weeks regimen and she says she forgot how miserable it was. She had those months off and felt so good, so free, forgot the unmitigated hell of continuous chemo. She says she doesn't want to continue. This is not giving her life, it's prolonging her death. She wants to pull the plug. Here in Canada she is allowed to request assisted death.
I don't know what to say to her. I don't know how to help. I don't know how to wrap my head around opening my inbox and never seeing her name there again. I told her I was going to quit asking how she is, because I KNOW how she is and that is a painful and redundant question that is for trivial conversation. There is nothing trivial about the topic on the table now. She is dying. She is 58. She is mad and desperate. She had plans.
I can usually think of something to say in most situations. But not this. My fingers hover for a long time over the keys as I try to think of the right thing to say. The comforting thing. The supportive thing. I try to picture myself in her shoes because one day I may very well be in that exact situation. Her docs have been clear that this chemo is not going to cure her in any way and any time it does buy her is going to be short and increasingly miserable. She can't eat. Food sits in a lump until she vomits it up. She is withering away.
How do I help? I HATE how useless I am in the face of death. I want to say the right thing, I want to say what she needs to hear. I have no idea what that is.
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I went through something very similar last year. My dear friend, who also was triple negative, was nearing the end of her treatment options. She was 45 years old, with a 3 year old son.. Nothing was working and I didn't have any idea what to say to her. I finally opted for honesty: You are my friend. You matter to me. I love you.
I'm sorry you are going through this, runor. Wish I was there to hold your hand
Trish.
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runor, I think Trishyla's ideas are good. I also suggest you tell her how you have valued having her as your e-friend and say you don't know what to say, you feel helpless, you wish you could help, and maybe ask her what would help her to hear. Even though you know she's not doing well, there's still some value in getting her to express her feelings if she wants to. I hope it goes as well as possible. Trishyla put it well when she said she wishes she could hold your hand, and I wonder if saying to your friend that you wish you could hold her hand would help too.
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Runor, I know this is a painful situation for you. Sometimes the specific words aren't as important as the fact that you are staying in touch. Too often our friends move away from us when they learn we have an incurable illness. I understand why some people do that, but to me it seems like it is the easy way out. You, on the other hand, have chosen to stay by your friend's side, even though it's from a distance. I am sure that in itself is a comfort to your friend. There are no perfect words at a time like this. Trishyla and Aussie-Cat had some good ideas. I think you should look inside your heart and think of a few ways your friendhas enriched your life. What has she done to make you smile? What has she done to lift your spirits? What has she done to help you through dark times? Once you think of those things, let her know how having her as a friend has impacted you. For me, I don't want to hear boo-hoo doom and gloom stories. She already knows what is going on. Maybe you could send her a card, could be e-card, every couple of days. Send different tones - some touching, some funny. Everyone needs to smile or laugh, even those who are very ill. I love getting cards. Most importantly, just let her know you are there for her.
Hugs and prayers from, Lynne
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Hi, runor. What a compassionate friend you are! You sound as if you are searching for a way to remain genuinely connected to your friend while also being sensitive to her fragile situation. Please be kind to yourself as you contemplate how to do this. There is no one right way of reaching out. Try not to think of yourself as helpless or useless, even though you are struggling. You've already proven yourself to be a devoted friend, one whom she trusts to share significant, deeply personal thoughts and feelings. You've helped to create a space in which friendship has grown. Now that space is widening into unknown territory, places you are unsure how to navigate.
Sometimes when we explore new territory, we benefit from taking risks, perhaps a leap of faith. We feel a little more safe if we remind ourselves of the life lessons and skills we already have learned. You already know how to listen, to be trustworthy, to be open, to share, to care. Allow that to strengthen your resolve to be as fully present with her as possible. Perhaps you might let her know that you will remain present for her *no matter what*--that you will listen to whatever she wishes to say, that you will respond as genuinely as you know how, that you care even when you might be a bit unsure of what you want to say, that you accept her however she is, that you two have a shared connection that is meaningful to you however the future may unfold. Perhaps you might let her know that even when you don't hear from her, you will keep her close in your heart and thoughts; that you are respectful of any choices she might make with regard to her living and dying; that you hear and understand how she is experiencing this phase of her life and that you are willing to continue listening and being present. Let her know that you are sad (or however you feel) and that you struggle, but do so in ways that support her knowing she doesn't have to take care of you. She may need to know that she is not a burden. Having said all that, bear in mind that they're just suggestions. Often what really matters in connecting with others is not the exact words that we use but the feeling and intention behind them.
Also, please be kind to yourself as you experience grief in anticipating her death and your loss of a precious friend. Treasure the time you have remaining. Trust yourself to learn and grow and grieve. Remind yourself that the gift of your friendship will bring blessings into your life long after she has died.
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I think you have gotten phenomenal advice from others. I can only add one thing. Sometimes the person leaving needs to know that it's ok to go, that all has been said that needs to be said and you are ok with her passing. Sometimes people are so worried about those they leave behind, they longer longer than they would have. Please be kind to yourself and express how you are feeling. It helps.
Claudia
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Runor, this shit is so hard. My brother in law moved in with us when dxd with pancreatic cancer years ago, he had the whipple surgery and we were hopeful but he declined, fast.
For your friend, I think it’s mostly important that you are there for here and I think being a non face to face source of support is immensely helpful. In your conversations, she can say what can’t be said at home but still needs to be said. I’m here and I care is probably a good start.
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Runor, so sad to say goodbye to a friend...even if the friend is long distance or an e-friend. I have been touched by the outpouring of love to Patty (pattypeppermint) as she is in her final days on this earth. There is a discussion group just for “patty”. Read MicMel’s postings and the postings of others. She reaches out to Patty daily and it doesn’t matter that Patty can’t post anymore. The lovely souls here at BCO posts words of love and encouragement. Sometimes it’s just a beautiful photograph with simple words.
Wishing you peace as you hold your friend’s hand
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I'm 45 years old, and was dx stage IV only 18 months ago. This afternoon I was told I'm pretty much out of options. I only went on two protocols... But my liver just... exploded with cancer over the last two months. In June, it was just a tiny lesion. Today, it's a network of cancer involving the whole thing. So... No surgery will fix it, and traditional chemo is likely to kill me without the liver to filter out the toxins.
I'm seeing a new MO on Friday to get a second opinion, at my regular MO's recommendation. All may not be lost, but... I wasn't ready to reach the end of things so fast.
My DH and I celebrated our 23rd anniversary in June. I'm not likely to see my 25th. I saw my older daughter graduate high school and start her adventure at art school. I'm not likely to be there for my younger daughter's graduation in two years. My DH's family is planning a family Christmas in Puerto Rico in 2019. I have to come to terms with the fact that I'm not likely to be there. I had so many plans, so many dreams, so much to do. Now... I have to prioritize for the possibility that I won't be here this time next year.
The thing that plagues my mind more than anything else is how much time I've wasted on useless things when I could have been doing something meaningful. I don't know how to process this regret.
I don't know how to say goodbye to my family and friends. When the time comes for me to tell my family that there's nothing left to do, it's going to kill my mother - potentially quite literally.
I don't know how to do this. How does one live each day with death painted all over your face?
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Thank you everyone. In our email exchanges I tell her all the time to just say it like it is write how she feels, no need to worry about political correctness or fear that she is 'being a downer'. We have pledged total honesty with each other.
It's hard. If I see someone struggling with a door at the grocery store, I open it. If someone falls, I help them up. If your kid scrapes a knee, you bandage it. But this. This dying. There is no helping hand, no bandage, nothing that I can put a patch on or aid with. And I friggin hate it.
I think about her husband who is witnessing this decline and I wonder how his brain is processing. Frankly, I don't think many of us are equipped to process. We just show up for the ride, processed or not. Here you are, tied to the bucking bull, hang onto this rope and good luck. I think sometimes shock is the most gentle place to be. Not denial, but stunned disbelief.
Princess Pincushion, I wish I had good words to tell you that would make a too early exit alright. It's not alright. It's a crime. I have said before, when I hear of someone dropping dead in the garden I think, lucky bastard. I keep telling myself it's not the dying that's so bad, it's the knowing that it's coming. But I don't know if that's even completely accurate.
I see where faith in a higher power, greater being, might wrap the Why of it all in a tight, neat ball, with the promise that you have served a good and worthy purpose and are moving to that place you were before you were born. If you have faith, now's the time. But you are surrounded here by women who know your struggle with acute and absolute understanding. Not that any of it helps. Hugs and strength to you.
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Princess, I’m sorry that you are where you are at with this disease. I don’t have answers for your question about how to go about living while facing end of life issues. But if I were where you are at, I would spend each day doing what I really want to be doing in as much as I felt good enough to be doing it. I feel there is truth in the saying “simple pleasures are the best.” A good cup of coffee, a drive along a lake road, walking the dog, fresh bed sheets, a warm hug. Drink in these moments and try to stay present minded when you can.
We are here for you in spirit.Many hugs for you.0 -
PrincessPincushion, sending you much love, strength and peace. I was where you are last year when I was told I had 60 days at the most, so I understand the feelings you are dealing with. I don't have any advice for how to handle it, I guess we each do it in our way and I don't think I was any good at it, but I do remember spending hour after hour sharing favorite memories with my husband and reassuring him that I had a good life even if it was short. DivineMrsM gives good advice to drink in the moments and live in the present, the simple things really are the best. I was too sick at the time to do much, but I spent a lot of time sitting outside listening to the birds sing or going for a walk on the beach if I was up to it. Those things brought me peace. My SIL came out and helped me get all of my plans & paperwork handled, get "the notebook" started, all those things I didn't want to face but knew would be incredibly helpful to my husband if I had it all squared away because he was an emotional wreck. Focusing my thoughts on how to make things easier on my husband took my thoughts off of myself when I was tempted to have a pity party. We don't have children and I can't even imagine how hard that must be but maybe doing something like putting together a memory book for each of them might serve the same purpose.
I felt a lot of guilt and kept apologizing to my husband for ruining our life plans. I don't recommend doing that because it really upset him, Later I went through a tremendous amount of guilt when I somehow pulled through and realized how much I had put my family through emotionally, so I guess feeling guilty (or maybe responsible) is just part of who I am. Not sure if it makes them better prepared for when it actually does happen, or worse because I'll have to put them through it all over again.
I asked my friends to please just be normal around me and make me laugh. There was only one friend I had honest and open discussion about dying with, she handled it so gracefully and knew all of the right things to say, but I mostly just wanted to enjoy the company of my friends and family, to laugh and smile and joke. I wanted them to have good memories of me, not sad ones, and I needed to feel happy. But don't be surprised if some people avoid you because they can't or don't want to deal with the situation. You'll be surprised (and disappointed) at how often it happens, and at the people who do it. The only way I found to get past that hurt was to realize it was their own emotional immaturity that kept them away.
It's a rollercoaster of emotions. My faith is strong and it carried me through each day, but you need to go through the stages of grief (denial, anger, bargaining, depression and acceptance) and that's normal, so let yourself feel all of those feelings. Don't let yourself get hung up on the regrets, focus on the good you've done in your life, like the beautiful children you raised,and be proud.
I know there's nothing any of us can say to make it any easier, and I know that my experiences are probably very different from what yours will be. But I am sending you a big gentle virtual hug and wishing you much peace and strength. We're here to hold your hand in the dark whenever you need.
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runor, I never know what to say either. But you're THERE! That's the most important thing.
PrincessPincushion, I'm sorry. I don't know what to say (see above). We're all [one day] going to be in the position you find yourself. I've made some plans and thought about it some but there's no way to know what to do or how to handle it.
I do firmly believe one thing: we can't go back, we can only go forward. So please don't feel regret about things you have (or haven't) done in the past.
The other thing I think, though it may seem selfish, is that you cannot be responsible for making anyone else happy. You need to concentrate on making yourself happy. Do the things that please you. Set up a caringbridge site so you can keep everyone updated without having to talk with them all the time. I'm sorry if the news may 'kill' your mother but that's not your fault. This is what it is. She wouldn't thank you for keeping it from her. She's responsible for herself and how she processes the information. YOU are not responsible for that.
Of course all of this is easier said than done. We're women. We're used to being the comforters, trying to make everyone else feel better.
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princesspincusion,
1st, love the name!
2nd, please ask your MO or another one about chemo’s like abraxane, possibility at a low dose. I read of some who’ve really benefited with this in their liver and it’s administered with human protein, rather than a chemical component, perhaps making it a bit kinder to your body.
3rd, I’m 43 and diagnosed 22 months ago. I had many end of life thoughts upon hearing I had brains mets but fortunately no regrets I feel like all experiences shape things, even boring days count for something. Now, treatment for brain mets are tolerable and I am determined to stay active, have fun and enjoy life’s pleasures from morning coffee to vacations and everything in between.
Please share the plans moving forward following your appointments, if you don’t mind. Best of luck with the new MO 🙂
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Therese-!0 years is wonderful. I'm on year 6. I asked my oncologist what the average was when I was first rediagnosed, she told me 1 1/2 years, because I had organ involvement, 2 years with just bone mets. In the next breath she told me she had 2 women 10 years out. I planned to at least meet them, if not pass them (one is still going 16 years out, and she has another 14 years). I agree I worried at the beginning, after every test (I still pick up my CTs/bone scans cds and reports as soon as they are ready, so I'm prepared when I go to my appointment, later that week), but now I say hi to my friends at the radiology office, and they all know me after 6 years of going there. I agree that Quality of life over quantity too. I'm sure I will eventually get there. I did enjoy my 5 weeks off of chemo, in July, in between chemos. I just take one day at a time. I still get out, drive (not as far as I once did), go shopping, swim, etc. I can't walk or stand for a long time (because of my spine, hip, pelvis mets), but as long as there is a cart at the store, I'm good. I do bring my wheelchair, if I know I'm going to be standing, or there will be a lot of walking (mostly on vacatons), and I see some stares, but most people look away. I've given up caring about it (well, most of the time).
I'm glad you are home and getting better each day! Great attitude!
Hugs!
Lynne
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Wow Lynne, I have to do the same with the wheelchair thing. I don't know if I'll ever be able to stand in place for a long time or walk for a long time but my family pushes me when I need it and then I push my chair around the bookstore until I have to sit and rest. I'm 6 years out from my first DX,but was DX metastatic this past February but I know it was present in 2017 but that's no ones fault except the cancer.
I love that statement "we can't go back and must go forward. Yeah!!!!!!0 -
I'm here to put some things into perspective for myself (and possibly others
)The first confirmed deaths from Hurricane Florence have come in. Some of us fret and stress over dying from MBC almost every day,. but these poor folks had NO IDEA earlier this week that they would be gone by today, Sept. 14.
The death toll will no doubt rise before this is all over.
I just watched the PBS American Masters episode on Margaret Mitchell, celebrated author of Gone With the Wind. She was killed by an automobile when she was 48 years old, crossing the street w/her husband on their way to the movies.
We should all be thankful we're still here, wicked Mr. Cancer or not. NONE of us is promised tomorrow.
L
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Good point Lita.
My Dx of Stage lll at 28 and Stage IV at 30 came as a big shock in a family where recent generations tend to live into their 70s and 80s. I bitterly wondered why I would be the first and only one to die young.
Shortly after, a 26-year old cousin was lost to suicide.
You are right, tomorrow is guaranteed to no one....
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18 year old young man was killed when a chimney fell on his car in Lawrence, Massachusetts from the gas explosions. He had just earned his license a few hours earlier.
We learned that on 9/11/2001 as well.
Tomorrow is guaranteed to no one.
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I sometimes think the hardest thing about this stage 4 journey is the knowledge of mortality that I carry with me on a daily basis. Before this life had its challenges, but there was a general sense of care-free-ness, a sense that the future is endless and life has so much to offer still. I heard a sermon the other day on our mortality, it was based on the book of Hebrews, and the verse starts with "Just as man is appointed to die once..." (Hebrews 9:27-28), and what really struck me was the word 'appointed'. By who? Definitely not me, I did not sign up for this death thing. God has an appointment with me and according to the Psalms that date was set before I was even formed. Not a second sooner or later than He intends. I guess that thought will have different meanings for different people,but as a Christian that comforted me more than anything I have read or heard during this crazy journey. Peace to all xx
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So true, Lita. A co-worker of mine, lost her son early yesterday morning. She opened her door at 8 am to see to Army officers. He was stationed in Kansas, and was celebrating his 20th birthday Sat night, with friends. He left his car at home, and someone else was driving. He was killed in a car accident. Every parent's nightmare. Her ex and her drove up to upstate NY, to get their 18 year old daughter. I can't imagine (and hope I never have to) feel what they are going through. Just awful.
I agree. We should be thankful for everyday. I have a sign on my wall of my family room (where I usually am), right above the tv, that says "Everyday is a Gift". Whenever I'm feeling down, I look at it, and remind myself, that it is a gift. 13 years ago I was diagnosed stage 1, at 43. 6 years ago, it returned in my spine and lungs, at 50, stage 4. I know I've lived longer than I ever thought I would. I hope to live much longer too. I have my husband (high school sweetheart), of 35 years, our 4 adult children, and our 3 grandchildren that I know, would like me around longer (as well as my Mom and 3 sisters, and his family as well). I am living with cancer not dying from it.
Praying for all those involved in the Carolinas. We are supposed to get the remnants of it tomorrow. Also praying for that young man that passed away in Lawrence, MA, from the natural gas explosion. What a mess down there.
My husband always tells me that he could always die before me. I hope that is not the case. A lot of us depend on him, but I know it's true. We never know when our time is done.
Be thankful for everyday my friends. Hugs!
Lynne
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Lynne,
One of the things that I pray for, with respect to DH and DD, is protection from drunk drivers, reckless drivers - and more so these days b'cuz of smart phones - DISTRACTED drivers. These fools could take any one of us out at any time.
L
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Lita-I totally agree! You are so right! Distracted driving is almost as bad as Drunk driving! There is a law here that you can only use a hands free device while driving. I don't think it's enforced enough though, I still see the idiots on their phones. I've had to blow my horn at a couple of them because they were coming at me, in the middle of the road. Pray that all have a guardian angel watching over them. Scary!
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I appreciate the introspective conversation here. It’s sobering to read your stories of untimely passings. I’ve had some of those experiences, too, since being dx stage iv where someone I am acquainted with has passed away unexpectedly. It is sobering.
I definitely agree with you, Daywalker, in that I am daily aware of my mortality and lost a carefree part of me when diagnosed. Which is not to say I haven’t lived a full life with many, many memorable, wonder filled moments since then. Because I’ve been fortunate to still have those. But life has a starkness now it never had before. And it’s not that I spend a lot of time dwelling on that, rather, it is sort of just there in the background.0 -
BCO sisters, Princess Pincushion passed away at 3:30 today. Her DH posted on the Liver Mets board.
We lost another one to this dreadful disease
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Bella thanks for letting us know. I haven't been spending much time on the Liver Mets board since mine haven't been much of a problem yet, now at least I could leave a note for her DH. Such heartbreaking news.
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Oh my.... what a sudden shock....
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RIP Princess. So sad.
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