A place to talk death and dying issues
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Hahaha Frisky! I know a few people who will be seriously mad if their spouses die before me!
JFL- I want to go fast- but, a serious issue especially when you are so young. I had 2 friends who died last month- both rather quickly - one of the spouses didn’t appreciate me being thankful that she went so fast and didn’t suffer much.
Grateful for this group who can discuss this !
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Nkb, my condolences on the loss of your two friends last month. Very sad to hear.
JFL, I get that part about the spouses feeling relief after years of stress dealing with an ill partner. I appreciate that people can be so honest about their feelings. I think dh will experience some of that, but I know he will grieve as well. He likes things to stay the same, so my loss will mean big changes for him and that will be his challenge. Sometimes he talks about the 1970s like they were yesterday and that was years before we met! One of his friends who he hadn't seen in 10 years passed away and he couldn't believe it—he said, well he was okay last time I saw him! Apparently dh wants time to stand still.
However, regarding people “waiting for me to die in some respects and growing fatigued that it hasn't happened yet, in a kind of 'I don't want this but if it is going to happen, let's just get it over with' way“— how I feel about others possibly thinking that is TOUGH SHIT. And I’ve been dealing with mbc for 9+ years. I am not about to cut my life short to make it easier on anyone else. I have just as much right—we have just as much right— to be here now as anyone on the planet and I will not apologize! To think the only way we should be allowed to live is if we are some kind of healthy specimen of a person is totally wrong. If others have to deal with my illness, SO BE IT. I didn't ask for this crap and they could be the ones dealing with disease and not dealing with a person who has disease, so who really has it the worst? This is all a part of LIFE. Yes, I get the part about wanting to go quickly, but I still have life I want to live! I'm not getting out of anyone's way to make it easier on them! My life is as valuable as anyone else's! Yours is, too!!! All of us are!!!
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Divine Mrs.M, love your post and love your attitude!! Made my day and made me think. Thanks!
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Rabbit, what a very sweet thing to say. Thank you. The feeling is mutual!
NKB~ I am sorry for your loss. So sorry.......never easy, never
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I have been living with MBC for over 13 years, and I know I should be grateful to still be here. I got to see both of my boys become wonderful young men. I am hoping to celebrate my 30th anniversary in August. I have accomplished everything I hoped, while being interrupted with a new phase of recurrence every few years. Throughout this, family and friends have been supportive, whereas acquaintances seem to think I must be faking it since I have looked strong even when I felt pain and vulnerability.
The cancer has recently fought through the Ibrance and spread to multiple areas in my spine, lungs, and lymph system. I am holding my own with Xeloda, although I have a rash over most of my body. Once the Xeloda fails or I can no longer tolerate the side effects, there are currently no other options since I am not a genetic match with targeted treatments and am unwilling to subject myself to any more infusions. In short, I know this is the beginning of the end.
I think I could find acceptance with this if 1) I didn’t have to see the depth of hurt in the eyes of the people who love me and 2) I were not allergic to all narcotic pain medications (confirmed after attempts to control my pain following many surgeries). I know I am going to experience incredible, unmanageable pain as I move closer to losing this battle. I do not want my family to witness my deterioration. How do we face this, find peace, and retain some degree of dignity? Hoping for insight and guidance
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can you enquire about barbiturates u other sleeping medication ? It is not opioid analgesic that you are allergic to but may help with pain. Or diazepam etc ? Is assisted death legal in your state? I am sure they can not just let you be in pain - there must be some way out of it. I can not imagine how you feel ; when thinking about it theoretically I think I would have just taken a massive overdose of something once I am ready but who knows how I am going to feel when it is my time ...
Sorry you have to go through it , Meme
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Meme, I don’t have any answers for you. I wanted you to know what your saying is being heard, and it sounds like a very difficult position to be in. I hope you can find some kind of support in the medical field, through hospice and/or palliative care. The part of seeing the sadness of loved ones is never easy. Sending you hugs.
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Thank you so much for your support. It is clear that you truly understand. I am learning how to piggyback antihistamines, anti-anxiety medications, sleep aids, and hopefully medical marijuana. I do not live in a state that allows assisted suicide. I have a pain management specialist, but I do have a “worst case scenario plan”. Once the Xeloda stops working, I will reach out to Hospice. There must be a kinder way to go.
I have been writing love letters to my children every year since they were born. I am having them bound, along with some of their art and letters to me. I am clearing our house of unneeded clutter and making sure that everything is in order. I keep thinking that I don’t want my husband or kids to have to go through stuff. Is anyone else nesting this way?
Meme
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meme- I am so sorry you are going through this- I can only hope something good will come your way before the xeloda stops working. I, too fear pain and deterioration and the feelings of my family. I am assuming I will be too tired and worn out to want to fight to live on, but, pain is a scary thought. You might want to read “being mortal” - it’s helpful.
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I used to think that writing letters to your future kids might be depressing or they might not want to read them. But just today my cousin dropped by a box of my dads things that they got mixed in with some train sets my mom passed down to him. My dad died about a week after my 1st bout with breast cancer I had come through the surgery successfully and they had clear margins we wanted to celebrate but instead ended a buryng him from a heart attack.
My life is gone on to be so much more than cancer and to see my two-year-old, his grandson growing up to a wonderful human being who looks so much like him and finds joy and zest in life. Anyhow the Box the things we found is from when he was in the military police in the army we found buttons and badges medals even some old shells and his dog tags. I wish I could find a letter from him... something just to his future child maybe he'd written something before he got married and had me some notes I would treasure it. I did keep the note that he wrote me one in the last weeks he was alive about feeding the dogs and the birds while him and my mom went out of town.
I miss him so much and the little pieces I find a him...it's a little painful but it is such a treasure. I think if you do it right and tactfully and not overload the moment that is just going to be something a piece of you that will be treasured for years to come. That and I intend up busting up portions of my insurance policy to be given to my son as he gets older like every 5 years surprise though be 3000 here's a 5000 here's another 3 here's another 10 as he goes throughout his twenties and thirties to help with the stages of starting a family may be purchasing a new car or taking his family on vacation or putting a little something away towards my grandchildren's college....who knows...maybe I get to be here to do it all in person .
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Divine, I enjoyed reading your response to my post. I was chuckling a bit too. You are right, we are all worth it!
7 of 9, thanks for sharing your experience with your dad and how you would have liked any sort of letter to read. I plan to do that, but haven't thought the time is right yet. I have no idea how long I will be here as I have defied odds being here 5 years with extensive liver mets and have not slowed down my life much in that time. My son changes so much month to month, year to year, that I will have more to say the older he is. He is 5 now and a letter I would write him now would definitely be more personal than a few years back as his personality, likes, dislikes, etc. continue to blossom so much in such a short time. However, I have it in the back of my head and will be prepared to jump on that quickly if need be. I keep a book in a place where I see it every day with some notes on that subject, which I wrote during an MBC retreat that talked about leaving a legacy.
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Divine - Amen!
Meme - Pain management is a huge worry with this disease...I hope someone in the palliative care / hospice area can provide helpful answers for you.
I like the idea of writing letters to my girls and grands. There are few opportunities to say those deep things on our minds.
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My problem is this: there is all this discussion about "end of life" ... last 3-6 months, last weeks, last days. What I want to know is how do I get from here (limbo land) to there. I just feel adrift. Yes, I enjoy my life. I love my books and my sports and my writing. I enjoy as much as I can while ... waiting. I know there will be bad times as much as I am determined not to do any harsh treatments. It's almost like I want to say, "let's just get this over with. Come on cancer, do your thing. Don't let me sit here waiting while being tortured by ten minor ailments of old age." Is this crazy? It feels crazy.
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Jaycee-49- I totally get this!! It is how i feel also. I think that it is called a “provisional life”. I want to just act like others who have no idea when they will die or think they will be 85 like their mom was, but, I can’t. I know that if I am average, for my diagnosis - I’ve got about 2 years left. But, I think- if I bought a new ( fill in the blank) knowing I am going to die in a short time- I feel guilty. But, if I have a heart attack ( in other words didn’t have a clue of my future) it would be ok to have made this purchase. I go ahead anyway- but, emotionally I feel exhausted waiting for the other shoe to drop. I mostly try to forge ahead like a “normal” person- but, the chatter in my brain is wearing. I think it is invalidating. I try to just pretend I am valid - not revealing my cancer to most people has really helped
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The Swedes call that nesting 'death cleaning'. It is so that your relatives don't have to do it, you maintain control over your things and yet have a chance to pass them on or purge while still alive.
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I was recently telling a friend that I felt it might of really been better for me to not know I was terminal. I really almost wish I didn't know. The knowing and the waiting make it hard to even try to get back where I was before all this. But I realize that I cannot ever get back to where I was. I feel how Jaycee and Nkb feels, how do we get from here to there. What is that going to be like? I'm scared to know. I also am enjoying things in life like my church, going to bird shows, trying to cook something new if my back lets me, writing, etc but at the same time I know death is knocking at my door. I am fairly certain the new pain in an area I haven't had it before for the last week is progression, If it indeed is and confirmed to be when I see MO beginning of next month, or when I do progress on Ibrance, I probably will stop treating and let go. Not because I'm giving up, but because I want some quality time with my family that doesn't involve a doctors office or an infusion chair, a new pill or a new side effect. Nothing I decide to do or not do really changes my ultimate outcome at this point. I think there are no bad choices at this stage. I explained this to my family and have their support. I told them I want to retain some dignity, and not be at the beck and call of cancer telling me when I have to stop. I want to choose that. Similarly to when I shaved my head before my first AC infusion. I decided to take my hair first. I want to chose to take whats left of my life back first. I may sound melodramatic, silly or even foolish but that is how I feel. I respect immensely every ladies decision when we struggle with what do, when we hear the words we all did.
I collect antique perfume bottles from the 1920's-40's. I think I will hold on to these as long as I can. My favorite things I own in the world outside my wedding jewelry. Then I thought, an old perfume bottle is going to outlive me. Ugh. I bought a new set of cookware recently because our other pans were shot to hell and I bought a pretty dress to wear this spring. I felt guilty with both purchases especially the dress, what if I never get to wear it, having cancer is expensive and money is tight so I try to be thoughtful and careful with what I buy. I've decided to wear my spring dress in the winter, just wear a heavy coat til I get inside somewhere. I told my chemo group in the doldrums of winter once that I was waiting for Spring to come, to lift my spirits. Perhaps I'll just wear spring while I'm waiting...in both senses.
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Radagastrabbit- yes! wear the spring dress! Do what brings joy. Don't wait. I did get some insight reading "Man's Search for Meaning" by Viktor E Frankl if you haven't already. I do think that we have to try to find our lives and joy despite the "knowing" of our demise. But, I feel like I am doing the validating and cheerleading of myself - so I hope I also get to throw in the towel when I want to. (this doesn't mean that DH and DKids are not- I just want it to be my way.
I have had 2 friends die from leukemia in the last year and a half. One found out by accident from a lab test for surgery- she went through a year of chemo, 2 bone marrow transplants and overall hell and died. The other one was moving furniture with her husband to refinish the floors and her neck started hurting and then she collapsed- he took her to the hospital and she died the next day from leukemia! (they were both 68) Who had the better last year in life?
I am reading a book about creativity- sounds the same in a way- the world is raining on your parade and you have to protect your creativity for yourself.
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Thanks for the validation, Nkb. I thought people would come and post that I need to see someone, like a mental health professional. I'm reading a book called Finish Strong by a woman active in the death with dignity movement. She does not have a terminal illness. I told my local organizer (I am very active locally) that there is a natural divide between us and them. She is not talking to me. She is talking to family, friends, and caregivers. The book is excellent for its purpose but does not speak to me.
I wish we had gotten together when I was in the Bay area in October. I should have worked harder to make that happen.
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You ladies are insightful. I have heard of the phrase “provisional life” but didn’t necessarily know what it meant. Very interesting, and it sounds like that’s where some of you find yourself while living with mbc. The disease definitely puts us on a different trajectory from those around us.
Rabbit, allow yourself the purchases without guilt. Yes, give yourself permission to simply buy some things for the sake of enjoying them. It may mean moving out of your financial comfort zone a bit, but that’s okay. Now’s the time to challenge the conservative money beliefs that you must always be responsible before you have any fun. You can find a balance without guilt.0 -
Rabbit~ your post again touched me. No melodramatic post there. Just honest truth. I’ve told my family the same thing. Not losing my hair again. Not going to be stranded in bed forever. I am scared too, but I’m more scared of suffering than anything. I agree with you when you say you want control. I agree. It just may be the only thing we do have control over. Is when we decide enough is enough. It’s so difficult because new things come along yearly. But I don’t feel badly telling my family the truth, so when the time does come. They can’t be shocked or push back at me. They all know I’m not into being helpless. I’ll accept help. But if I can’t get up and go to the bathroom with dignity, um I can’t hack that! I want to function my parts for myself. If I cannot, I wouldn’t want to become a major burden. I want to live while I can. But it must be living well. Not suffering and hopping from treatment to treatment. I just don’t know if my body can take it. I’ve been through 10 surgeries in my lifetime. 6 for cancer alone. I’ve had enough. Heavy AC chemo aggressively, leaving me with terrible neuropathy, along with sister Abraxane. Up and down in the beginning. Being told “you have two years”. I hate that they told me that. I believed them and panicked. Now here I am four years later. It’s just cruel having to even feel this way. None of you are alone. I feel the same way. Hugs rabbit. I care.....0
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Nkb, I wanted to offer my condolences on the recent loss of your two friends. It’s hard to deal with. Some shock, lots of memories, lots of sadness. And how you describe what each went through, it really does give pause for thought. You have my sympathy.
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Meme, I've done a lot of decluttering of my house although I'm not worried about getting everything perfectly in order. My house is large and I'm a good organizer, but what I realized was that I'd organized and stored a lot of junk. So several years ago, dh and I gradually piled things up over a six month period and then had a large, successful garage sale. The stuff that didn't sell went directly to Goodwill. Getting rid of so much felt great, and we are mindful not to fill the clutter back up with more stuff. Which is not to say I don't buy things, I still do. Since the garage sale, I replaced my dishes with all new white Corelle, bought blankets and porch furniture and if I find clothes I like I buy them.
And yes, as you say, Sondra, there is a term that the Swedish call this, dostadning, or death cleaning. I even read a book on the subject. It was okay, but I'm a bigger fan of Marie Kondo and also like Peter Walsh's books on getting rid of the clutter.
One thing suggested was the idea to give stuff away while you’re still alive. Some people don't realize that most of the stuff they own, their kids don't want. Times have changed, the newer generations have their own tastes and styles.
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But what do you do if you live with a person who is THIS close to being a hoarder? I can clean out my stuff but his stuff still haunts me. DS will have an estate sale because he makes efficient use of his time. (He says that time is his most valuable possession.) I don't care about the money but some valuable memories may be lost.
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jaycee, there's a thread on this forum called “Not quite hoarding - decluttering" and what to do about husband's stuff is a very common topic.
My dh has a harder time than I downsizing. One reason is our different perspectives on life. In the 1990's, within 4 years, my mom, dad, grandmother and aunt all passed away. This meant 4 homes full of many decades of stuff that needed addressed. What an eye-opener to me to see how much unnecessary stuff people leave behind. And then of course, in 2011 I was diagnosed with mbc. All of this gave me acute awareness of how finite life is.
Dh strolls merrily along in his world. His mom is still living at age 91. At one point she downsized from her house to apt and then we had to address her apt things when she went to live with her daughter, but that wasn't as intense as what I went through 20 years ago with my relatives. So in some ways, dh is blissfully unaware.
He's not a hoarder but is a pack rat. I won't get rid of his stuff, it is his, but I do make certain points. We each have a closet of clothes but there's a larger closet in a spare room packed with dh's things, and I mention it to him that nothing in there is mine, so he knows its his stuff clogging things up. I casually point out other areas where I've gotten rid of housewares, books and knick-knacks. Sometimes it nudges him to go through and declutter some things. Once I organized his regular closet by color. He saw how many black tshirts he had, gray ones, blue ones, ect. It made him realize how much he has.
I keep the first floor tidy, mainly the living room, bathroom and kitchen, His stuff isn't allowed to sprawl in those areas. We all need certain boundaries so we don't feel overwhelmed by our husband's things, and the men need to respect that.
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Way back when I was diagnosed with mets I told someone (our lawyer -- we were doing new wills etc.) that I figured I'd have a year's warning before death. Naive much?
But now I'm wondering if this is it. I feel like things are starting to "go wrong". The cancer caused both hips to break last fall and the rehab has been slow slow slow. After four months I'm walking ok with a cane but with a 2-3 block maximum radius. Yesterday I had to walk 5 blocks and today I'm back using my walker.
Not to mention that the sore behind my ear and two bumps on my skull have now been diagnosed as skin mets. Apparently that's very rare. Oh, and the last two treatments (December and January) haven't worked at all. Which means it's been 5 months without an effective treatment. It'll be the red devil three weeks from now. . .
It could be that I'm just having a bad weekend and in two months I'll laugh at myself, but right now it feels like I'll never recover from the hip replacements and the cancer is just going to take me over. That basically I've reached the part of the slide where you can't stop it. I asked my MO that question this week and he dodged the answer. That means he's worried. He has to be if he's going for Adriamycin.
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pajim I'm sending you love and hugs because I've been there. While I can't even imagine what you're going through with two hip replacements, (thankfully my extensive bone mets haven't caused any complications yet) but I hope my recent treatment history can give you a little hope - I went more than 18 months before we found a treatment that worked, and I have a very fast growing cancer. It has been two years since I've had a scan with no progression. Every scan showed it popping up someplace new. My last scan showed the cancer in several dozen lymph nodes throughout my body, from neck down through abdomen, when they were clear just three months earlier. After failing so many treatments I was sure it was the start of the end because that's one of the main ways cancer spreads and if we couldn't stop it... Every treatment we tried has failed de novo since February 2018 - chemo, targeted therapy, radiation - and I was feeling so hopeless. Even if we beat it back one place, it just immediately popped up someplace new. My only saving grace has been that other than two spots on my liver, the rest of my organs have so far stayed clear. Instead I get mets and new tumors in odd places. I could see the worry on my doctor's faces last year when treatment after treatment failed, but they didn't give up on me even though I was almost ready to give up on myself. In November we finally found a treatment that worked, and right now I'm cautiously optimistic that I'll have my first scan in 2+ years with no progression.
I've dealt with skin mets twice so far, locoregional thanks to IBC, but in my research I read that it's believed they actually occur in about 20% of metastatic breast cancer patients. Apparently they frequently aren't identified until after death. Skin mets are tough to treat, especially if you're not HER2+. The skin is immune privileged similar to the blood brain barrier, and not many drugs cross over. There are a couple HER2+ drugs that appear to work on skin mets. Taxol actually worked on mine the first time around even though they had ulcerated. We used radiation (68 gray) the second time after they didn't respond to chemo and they were spreading too fast to give me time to try another chemo. Funny thing is, the skin mets eventually responded to the rads, but the tumor tangled in my brachial nerves that was being radiated at the same time didn't budge.It still ended up being bigger than it was before the failed chemo. I know that I am beyond lucky in beating them back twice so far and I doubt I'll be as lucky if they show up again. Wish I had something warm and fuzzy and reassuring to say about skin mets, but I don't because they suck.
I don't mean that to be all about me, just shared to let you know that I understand how hard it is to try to stay positive when things keep going wrong for an extended period of time. I know how dark and lonely it can be in that place. Recovering from two hip replacements on top of everything else you're going through is incredibly tough. I'm so sorry you are going through all of that, and we're here for you.
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Pajim- that sounds really hard to try to deal with all the mobility issues of the hip replacements and cancer not responding to treatments. It is so wearing mentally and physically. I hope that you have a good support network around you. Thinking of you and sending hugs.
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LoriCa- nice to see you! I am glad that you are having success with your treatment- very happy news.
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Pajim, although I don't have any answers or hopeful personal stories to share, I wanted to add my love and hugs to those of everyone else's. From the first day I joined this site I found your posts to be a wonderful mixture of humor, level-headedness, support and realistic hope and I always look forward to what you have to say. I'm so sorry about the rotten year you've had, about the hips, about the failing treatments, the new tumors popping up, the pain and worry of this rotten disease trying to grab hold of you and take out the light of hope in your heart. You've given all of us so much support and comfort - as you go through this rough patch, please know that there are so many of us ready to give some back. At the very least, we're here to listen and care.
I'm not great with the words and feelings, so I'll try to brighten the light of hope by pointing out some facts: as you say, you've been without an effective treatment for 5 months. Like an unsupervised rebellious teenager, cancer has had a chance to have a party in your body and cause some damage. But you're still HERE, and although your hip is getting better much too slowly, it's getting better, not worse, and the rest of you is still very much in full functioning shape. Your doctor is worried. Of course he is - you've left him in charge of the house and two of the last three chaperones he appointed did nothing to stop the partying. They were unusual choices, with a high chance of failing - Verzenio after you'd been on Ibrance a year before, and CMF, which is not a commonly prescribed chemo for BC. The third one (Piqray) looked to be clobbering the cancer and your body at the same time, but it's still something to try and revisit. I'm not saying that he was wrong to prescribe any of those - at the time he had reasons to believe your cancer was quite lazy and "well behaved" and likely wanted to preserve your quality of life and independence. But now he knows better - he knows he needs to bring in the tried and true burly sheriff and beat those little shits back into submission. And it looks like that's exactly what he's planning to do with the adriamycin (I'm wildly guessing he's picking adriamycin over doxil because of the skin mets, but I could be totally wrong). There's obviously no guarantee that it will work, but more importantly, there's no reason to think that it won't.
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pajim, I’m sorry to hear how things are currently going for you. I don’t feel that my situation is quite like yours, but I had a bad year which made me question for the first time is this worth it. Last March my scans showed bone progression and I’ve had a year of trying the CDK inhibitors. Ibrance did not work and I should soon see if Verzenio has done anything. The side effects of these drugs altered my QOL and my world has become a lot smaller. Whatever the coming up scans show, I’m telling tell the onc no more CDK stuff, try something else. I had a good run on Arimidex alone but cannot say if there’s anything else out there that will be effective. It’s that limbo state of not knowing plus feeling yucky.
So my heart goes out to you. Piggy and Lori, your words to pajim have brought comfort to me as well.
Pajim, I hope for the best for you and want you to know you’re in my thoughts.
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