A place to talk death and dying issues
Comments
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Pajim, following your struggle is really moving. As I write this I am hooked up to my first treatment with the red devil's gentler cousin Caelyx (I think you call it Doxil). Looking at that red bag and remembering how the last time (2013) the red devil landed me in the hospital for two weeks with zero white blood cells and a bad infection still gives me pause. It's like the body remembers . Hope your experience is tolerable, do keep us posted if you can.
I haven't had a chemo that has worked in over a year and we are doing the Doxil because I have apparantly blown through everything else so we are starting again.
My oncologist is very reluctant to talk about how much time left etc. but I noted in the tumor board's protocoll that I am called "end of the line". That's a bit of a shocker even though I don't think they mean end stage. My curator is more open, talking about getting necessary wills etc taken care of. I'm shelling out two thousand dollars for the Foundation One test hoping it will make me more available for clinical trials focused on gene mutations. A long shot.
My situation is a little different, being single with underaged children and with no other family here.The few times I have had to go to the hospital in an emergency none of those ten friends who urged me to "call anytime, with anything, we'll help" were willing to actually give up their theater tickets, dinner plans for work meetings.This isn't because they aren't wonderful caring friends, just that I think they are certain that someone else will help. I do fear what ths means as I become more immobile and weaker. It gets humiliating to keep having to explain to the hospital staff that I don't have a "caregiver".
There are almost no hospice options here, the focus is on home care with the idea that someone will come in 3-4 times a day. My teenaged girls are in deep denial about me being terminal and I am not sure that putting mama in the corner of our tiny apartment to die slowly is a good option. Can't I sit peacefully in a garden in Thailand instead? My instincts are to crawl away like a cat, though I know that's not fair to the friends and family that want to have the chance to say goodbye. Well anyway we are not there yet.
Am listening to the podcast "Dying for Sex". Anyone else?
Best to all from chilly Stockholm!/AMY
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radagas, my heart bleeds for you and I can imagine being where you are. It is ok to say enough is enough and I believe people should respect that. I hope that you can find some peace. X
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RRabbit, the decision about how much treatment you're willing to accept is deeply individual. The cancer-world idea that we are all warriors puts a ridiculous amount of extra pressure on those of us in the trenches to endure whatever we must to continue the battle. There was a recent discussion on these boards about a beloved member that, while open to innovative immunotherapy, drew the line at chemo. You have the right and obligation to decide what your journey is. And you have the right to change your mind along the way. I think you're going about it in the right way, thinking ahead and being open about your feelings.
Amy, I hope the doxil treats you kindly. I talked to my MO about it, as that is likely my next line. She said her patients generally tolerate it well. I'm praying that's the case with you. I'll add 'Dying for Sex' to my podcast list.
Regarding hospice vs. home care vs. hospital. My mom died in the hospital of breast cancer when I was fifteen. I had already gone through the worst of it with her at home. Going to see her at the hospital those last few weeks wasn't any easier or harder than had she been home. My preference is home hospice until the last bit, whereupon I end my days at a hospital. I just prefer the 'housekeeping' aspects of death be done in a clinical setting.
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I often lurk without posting because I don't know what to say sometimes, but I want you to know that my thoughts are with all of you always.
arolsson the garden in Thailand sounds perfect. I don't want to die in an institutional setting surrounded by strangers, but my husband struggles with the idea of me dying at home. I think he believes it would make it too hard for him to be in the house after I'm gone. I sometimes think that maybe I'll just go lie down in the Mojave and stare at the stars and Milky Way overhead, then let the buzzards and coyotes have their way with me, my way of returning to the earth. I want to respect his wishes, but he also needs to respect mine because I'm the one who is dying (but he is the one who is going to have to deal with life after I'm gone). There are no easy answers. We should probably make an appointment to meet with hospice now so we can discuss our options and make an informed decision before it's too late and we're forced into it. I know that we often imagine a slow, painful death, but lately I've seen so many who were doing things like running marathons just weeks before they died. I hope that's the way I go, quickly, but I don't want to be caught off guard with things left undone.
My MO and I believe that I only got 15 weeks on TDM-1 (Kadcyla)before signs of progression, but we're not going to scan or change anything just yet. I'm actually feeling pretty good right now all things considered, and I want to enjoy it for as long as I can before jumping back on the hamster wheel. I'm grateful that my MO and I are on the same page about my treatment and that he's the one who always suggests making the most of my QOL, even if it means only squeezing out another 3 weeks. I know I still have options left, but in all honesty I hate all of them right now and am finding it impossibly difficult to come to terms with any of them.
RadagastRabbit what you are going through is perfectly normal, I'm on the extreme highs and lows of a rollercoaster all the time. You are not a wuss for the way you feel, none of us here are. Treatment failures are impossibly hard to deal with emotionally, and treatment fatigue is a real thing.
Since my prognosis was so poor right from the start, I signed my DNR, POLST, and Advance Directive a few weeks after my Dx. It was the hardest thing I've ever done in my life, with my husband tightly squeezing my hand as he tried to choke back the tears and stay strong for me as the notary certified them. It took a long time to recover from the emotional turmoil of signing those papers. But I'm glad I did it early and don't have to go through it now. I would strongly urge anyone who hasn't already to get the appropriate papers in place now before it feels like you are "giving up".
pajim how are you doing?
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RRabbit, there isn't any right answer or wrong answer. There's only YOUR answer. Truly.
You want to stop, I'll be right there holding your hand. You want to try something else, I'll hold your hand for that too. The ladies on these boards tend to be interventionalists, but it's not required.
The trick, I think, is to make sure you, your MO and your loved ones are all on the same page. There seems to be a lot of angst on these boards when families can't let go, or when the families are ready and the patients can't let go. I've seen it with a family member and a good friend who died of this disease. In the first case she couldn't stop and in the second case her husband couldn't stop. My MO, DH and I are on the same page. I will not be counting every heartbeat of life. My goal is to play bridge on Saturday and drop dead on Monday. Not that it'll happen, but that's the goal. Could I live six months longer in misery? Probably. Will I? I certainly hope not.
And, well, my TMs continue to rise. They gave me fluids on Monday to try and support me through Adriamycin, which all went to my lungs and caused various problems. I spent Tuesday getting chest x-rays and echos to make sure I didn't have heart failure. I don't. Just small pleural effusions which, after a few diuretics, have gotten smaller. LOL.
I've been feeling like dirt for two straight weeks so forget it with the red devil. I'm not going to suffer through something that doesn't seem to be working. This morning I went back to alpelisib. I think it was working last December; we'll see. I'm trying to stay optimistic yet realistic.
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pajim you are so right that the key to finding peace in these decisions is having everyone on the same page. Thankfully I'm blessed to have that, although it took a few tough conversations with my husband, with some help from his sister, to bring him around because in his heart he never wants to give up on me. But he does understand now. My MO and I were on the same page right from the start and he prioritizes my QoL over everything. When I read stories from people who think their MO doesn't care at all about their QoL, I know that I am very fortunate to have found one who does.
I'm so sorry to hear about your tough times with Adriamycin, that's very disappointing. Hoping you have much better luck with the alpelisib and that you start to feel better soon!
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I'm just gong to throw this out there because it's something I have done for too long. I recently learned of the phrase “pathological accommodation". The definition is “continuously complying with someone else's priorities at the expense of my own". Even though I think on some levels I'm assertive, I can see many instances where I give in to what others want or put their priorities ahead of mine. What happens if you do this often enough is the person or persons you always give in to either consciously or subconsciously realize you are always putting them first, and they come to expect it and even take advantage of it. Then when you start putting your own priorities ahead of theirs, they can become angry or try to make you feel selfish.
I’ve really been working on this area of my life this year, trying to stay aware of my priorities and not shoving them aside to accommodate everyone else first.
I say all this because each of our lives are our own. They do not belong to our significant other's, our children or our parents. I feel that my end of life choices must be what I prioritize, not what my loved ones want me to do. I am one who does not want to prolong my suffering and try to wring out every last day I can. Fortunately, my husband is on board with this as he does not want to see me suffer. I haven't discussed it with my son or siblings. But there have been so many times in my life when I was forced to do or guilted or pressured in to doing what others wanted me to do. But the end of life, no. That's a call only I am going to make.
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I also want to strike the right balance and not suffer too much. I have had a horrendous flu for 2 weeks and can barely function. It has taken MBC off my radar mostly. I need to have that talk with my DH besides theoretically. He’s been a bit hopeless during this flu.
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Thank you ladies for hearing me out. Hubby and I had a long difficult talk over the weekend. When progression is confirmed I will try Ibrance/Faslodex if MO thinks it would be worth the try/would be tolerable and effective for a good length of time. If I dont see improvement in QOL on that combo after trying it I would stop treatment and focus on enjoying my remaining time. Hubby is on board. I agree the boards do tend to be inventionationist. I am tending to gravitate at this juncture with the idea at some point you have to stop it's just a matter how far each one of us wants to take it, well that decision lies with us. It is a very hard one to make tho. Very hard. I agree this choice really ultimately needs to be up to me and what I'm comfortable with and what I want to do. Jaylea, thank you for reassuring me I'm going about this the right way
Pajim, I'm so sorry adriamycin failed you. What a nasty devil it is... I know... I'm thinking of you and holding your hand back. Hoping piqray does the king Leonides and the band of 300 damage we need it to do, to the cancer, not to you.
Lori, it's good to see you post. You are thinking some of the same things as me. My husband is like yours, he just needed a conversation with me and others to help him understand. He loves me very much. He told me the other night he's not sure if he would survive my passing. I'm not sure myself. We are each other's best friend I don't think I'd survive without him either. While I'm set in terms of paperwork in place I'm curious too about hospice and how tat all works. I think once I'm confirmed on my last chosen line it will be time for me to visit that.
In the meantime even if I speak frankly or matter of factly about things, even gut wrenchingly concerning death and dying I'm still out there being me. I think that can be said of all of us too. I'm honored to share and learn in this thread. Love to you ladies.
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My MO and I had the talk on Monday. It seemed to come all of a sudden, but the truth is that I I have been going down hilll a little at a time. I have been very lucky and have enjoyed my life, my family, and my friend rightsup to the end. Here's the deal - I will have an electrocardiograph tomorrow. As long as everything looks okay I wil start on Andriamycin. If it works, it will give me a bit more time. If it does’t there is nothing left for me. My MO has promised to tell me when it is time to stop. The meeting wasn’t as bad as I had imagined. My husband showed so much strength. I will write more when I am ready.
Hugs and prayers from, Lynne
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it is so weird reading you talking about it so matter if factly , Lynne.
You must have right mix of feeling inside... Hugs.
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Lynne, it is hard to know what to say and my heart goes out to you. You have a way of being brave and positive about dealing with metastatic breast cancer, while also managing to express the difficulties you experience with all the twists and turns that mbc brings.
Even though we only know each other through this forum, I feel like you are a neighbor who I know in “real life" as though I met you in person. That's how warm, friendly, supportive and understanding your posts always are..
I think you and I share similar philosophies on being diagnosed with mbc . We've feel we've been lucky to have great support, a loving family, good medical coverage, and we have opened our hearts and been able to live life fully and try to appreciate each day. We know not everyone has that. But we also acknowledge the unfairness of the disease, and wonder how is it that others seem to sail through life with far less medical care needed while we struggle. I'm not sure it's a blessing or a curse to see both sides of this equation. I only know I see it from many different angles.
Please know I will be thinking of you.
- Camille
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Lynn,
Sending you (((HUGS)))
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Oh Lynne,
My heart is breaking for you tonight. You have been a constant presence on this board since I joined. Always a positive force and an amazing support for all that joined the conversation. I’m so sorry that things have gone downhill for you to this extent. My thoughts and prayers are with you that you will receive the okay for Adriamycin and that it does what it needs to do to keep you strong.
Sending you a virtual hug from Canada! Pat.
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Lynne, I'm so sorry, sending huggggsss to you and hopes Adriamycin does what it needs to do.
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Hugs, love, and prayers Lynne
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Hope the new protocol leads to improvement for you Lynne! In the meantime, sending hugs your way.
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One of my compatriots in the local advanced cancer support group has an idea. He wants us to create a pamphlet to use after we have "the talk" with our doctors. He's been notified that he is out of options. He's discovered that this kind of information isn't easy to find. He noted that in the book, "When Breath Becomes Air", the doctor's wife told the story at the end. My friend was more interested in what the doctor would have said. Our group thought this idea had some potential...
He wants to offer specific ways family and friends can help, such as:
- Canceling upcoming appointments
- Taking care of online accounts
- Managing housing for visiting family at funerals
- Sitting down with his daughters-in-law and grand kids, broken out by age group, to ask if the kids had any questions for him about what was happening. (His adult sons thought the meetings helped.)
- Asking for rides to places when we can no longer drive ourselves. (Informing drivers about any special considerations, such as seizures, so they could opt out, or get training.)
There's a lot more, but we all liked the idea of giving out "assignments" so those closest to us really could feel less helpless. (We'd all discussed being the one who's consoling others and keeping things together for our families when we're the ones actually going through it.)
I thought you all would have valuable input on the idea itself and what to include. This group knows important things about having a "good death" when the time comes. We can also include good stories to illustrate the ideas if you have some to tell.
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Lynne- I am glad that you got to Hawaii! I am hoping that you will get to return.
Having gotten terribly ill this last few weeks with flu that went into pneumonia- I worry that I won’t get this set up in time. I’ve been assuming that I’ll start sliding into the no options left feeling well, gather the clan and explain it all and fade over a month or two. and can set up hospice And other help with dying - but, this illness scared me into realizing it may not go like that. We did fill out a book about finances- I haven’t gathered the kids and ask them what they would want.
I write- a guide could be quite useful.
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Lynne, Sending you prayers and gentle hugs. I am glad your dh was with you through the talk.
Reading your posts over the years has helped us all value our days even with mbc. Maire0 -
Lynne~ you are loved, valued, trusted, cared for, kind, loving, beautiful, special, compassionate. So many things apply to you. You’re greatly on my mind and in my heart.
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Big love and hugs to you Lynne.
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Lynne,
I have always appreciated the kindness and wisdom of your posts. You have such a way with words-you always seem to know just what to say. I wish I knew what to say to you right now. I"m a bit stunned because it doesn't seem like it should be your time yet. I hope that perhaps a clinical trial emerges or that the Adriamycin beats back the cancer into remission. I pray that God's peace surrounds you today and always.
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Lynne, many hugs to you. As someone who recently had the 'pre talk' with my MO (do you have your affairs in order? Yes. Promise me you won't admit me to the ICU. OK) I feel for you.
I'm really glad the talk went well -- it sounds like you and your MO trust each other.
Crossing my fingers that Adriamycin will do something and no try to kill you. My one piece of advice is to keep steroids around just in case.
More hugs, Pam
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Thank you for all your kind thoughts. I had my electrocardiogram yesterday and will receive the results on Monday. I will also find out if I am fit for chemo. Thank you for your steroids advice.
I have so much to say but feel overwhelmed and week. I hope to be able to post post next week.
Hugs and prayers from , Lynne
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Once and a while you encounter somebody that really touches you. They seem to have that ability with everyone. Posts are always kind, thoughtful and uplifting. They have a way with words that everyone seems to recognize as being sincere with good intentions. I think most people are drawn to that type person because they make you feel like they truly care in every single post. 50sgirl has that ability. She is someone I always follow. I wish I was more like her.
Lynne, you are on my mind and I will be praying for you.
Mary Anne
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Praying with you Lynne 50’s girl. Please share again when you feel up to it. You’ve been a fierce fighter in this MBC battle.
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Lynne, Thanks for being here on these threads. I’ve appreciated your wisdom on all that we deal with, or will deal with. I too hope the Adriamycin is doable, tolerable, and helpful for you.
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Lynne, my heart sank reading your post. Know we are here when you are ready. In your pocket until then ❤️
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Mary Anne, I cant agree more with what you wrote. Lynne is that person in my eyes too. Uplifting, will stand with you in the storm, and will laugh and dance too.
Lynne, sending you all of my prayers for peace as you think through all of this. You are loved
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