A place to talk death and dying issues
Comments
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kjones, Thank you so much for your thoughtful, informative posts. I have have learned a lot from your messages. I am glad that you were able to receive some comfort at the cancer center. You have been through such an emotional experience. I wish those of us here could give you a group hug. I will probably have questions for you, but they can wait.
I have gone back and forth about whether to die at home or not. You have confirmed what I had heard about hospice. Although they provide many valuable services, home hospice is not a full-time, all-encompassing service. I realize that it would be impossible for my DH to handle my dying by himself. The alternatives, of course, are limited. I would be interested in a hospice facility, but the cost could be prohibitive if I was there for a long time. Insurance doesn’t cover that cost, only home hospice care. More to think about.
Please give yourself time to grieve. You have been through so much. Think about the good times you shared with your mom. Remember how much you enjoyed each other’s company, how she laughed with you, the serious and light-hearted conversations you shared.
Hugs and prayers from, Lynne
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I watched my father pass away. I saw him actively dying. The body just shuts down. I needed to see that process for myself. It was hard. And scary like said above. But over all having everyone you love around you is a beautiful thing. It’s just so difficult to watch.
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Thank you, kjones, for taking the time to share. I wish you peace and comfort in the coming days.
Carol
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I just posted this to one of those "MBC is not a death sentence but a chronic illness" BS articles on Facebook. I am so sick of that attitude. And I am starting to get this vibe that people are saying, "Hey, what's the problem? You can live for YEARS with MBC." I am taking my stand for myself and all of you who agree.
"MBC is still a death sentence. You may not die in 2-3 years but get 10 instead. Better but still a death sentence. And during that 10 years, you are always wondering when the hammer might fall. All the while taking drugs that make you wish you were dead. Not pleasant. This "chronic illness" BS is so annoying to MBC patients. It just gives big pharma more time to drain your resources and make more $$$ themselves. I wish FB would stop publishing this crap."
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jaycee, I hear you! When you are waiting for the results of scans every three months, and hoping you don't hear, "Sorry, we've no more treatment options", it doesn't feel "just chronic".
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Jaycee- Agree 100% !!!!!! Chronic illnesses are diabetes, COPD, arthritis. Not Stage 4 Breast Cancer !!!! We are on continuous meds, that make us feel like sh&@, by the way. Scans every few months. Blood work all the time. When will the other shoe drop ie progression. We have cancer already. Yes, I pray for more years, but 10 years if I am lucky. Come on. I am only 50 years old now. Will I be "lucky" to live to 60? And feel sick most of that time? Not a "chronic" illness. Call it what it is.... a death sentence. And not a pretty one at that.
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I'm just really sensitive to this topic right now. I am working with people who are trying to get a death with dignity law passed in my state, NM. We only get a crack at it every two years when the state legislature does a "long" session. And the pandemic is not helping. I am composing emails to thank those who agree and convince those who don't that death with dignity is a good idea. I need a brain transplant. Did anyone here work on passing a death with dignity law in their state? I don't know what words will work.
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Jaycee, I’m sorry, I have no info to offer but I do agree and wish we had it here in Texas. That’s unlikely though, too much deep rooted religion.
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Mae, we have that problem here, too. Catholic state but last time, it almost passed. If we pass our law, I invite you to drive over and use it when the time comes. Remember, 45 min from El Paso. Park your RV in our driveway.
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Jaycee, do you have parking space for 2 RVs?
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Sandi, not really but you could park on the street. Plus there is an RV park right across the street. We would have to pass the NM law first. I'm getting discouraged because it is getting so close. The sessions start Jan. 29. We've been working so hard but we did last time, too, and it failed. But it was very close. A few changes were made to this current one that I think makes it harder to pass. They made getting the prescription a little easier (48 hour waiting period instead of 15 days, one clinician instead of two). I'm afraid that will turn some legislators against it. I'd like to leave it the way it was to at least get it passed. That's the first step. Several of the states with existing laws are trying to change them now to less stringent rules but at least they have one.
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I am the primary caregiver for my husband, who has Stage IV mesothelioma and has been told by his oncologist that he has "months" left (of course, how many months we cannot know). Having just been diagnosed with MBC myself this month makes everything feel surreal, and yet people keep telling me how I will live "for years" and how great that is...it's very difficult to talk with people who don't understand that some cancer is not going to go into remission, and that I do have to update my will and plan things for my own end of life. I will be here for my husband's death, and then I don't know who might be here for me - I really hate the idea of that being my Mum (and dying before her, I'm 51 now) although I know she would be there at the end with me.
We do have the End Of Life Option Act here in California, and my husband has talked with his doctor about this already. I wish this was available for anyone in any state who wanted it, it seems unethical that this isn't an option everywhere.
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Jaycee..I will be your cheerleader. People with terminal illness need a choice on how they want to live and die.
Your mission and success will be your legacy.
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Jaycee, I agree 100%. I was honestly kinda getting the "chronic illness" vibe a bit from the new description to our section here we didn't have any say or input in. The emphasis for MBC now seems to be there's always another drug to move to, another treatment to try and it's not so bad and our lives are full and vibrant...just like those Ibrance commercials depict...drugs drugs drugs.. there has to be more drugs...because our lives now are defined by a life of constant treatment...unless you get sick of it all and the side effects and the dr visits and decide to stop on your own or cancer decides everything and you get no say. It's not chronic. Its anything but chronic. But people believe it is or someone tells them its chronic. I used to use terminal to describe MBC but people dont seem understand terminal because 6 months after a diagnosis you can still see us walking around, so maybe fatal or deadly would be better in describing it. Short or longer survival either way its outcome is still the same we just never know which we fall into. If MBC is ever going to get the attention/funding it needs the way in which it is described and the portrayal of how someone living with it truly feels as they coexist needs to be tweaked.
Concerning DWD, my state is still mulling over it legislatively tho I think they are calling it something else. It's been tied up for at least 5 yrs. As a Christian I have thought about the idea of this alot. Im prolife but I cannot find any reason to deny a terminally ill person relief from suffering or wanting to avoid suffering, even if I wouldn't do DWD myself or have reservations about it. I kinda am more on the side of requesting the morphine counter be turned off and my beloved being able to unlimitedly push the button if he sees I might need aid to push things along if things got bad.
kjones thank you for taking the time to share. It was hard to read in some places as I'm sure it was hard to write, but it was appreciated. Talking about death and then seeing it up close and know one day that will be you has to be eye opening.
Appreciate the open discussion. People just want me to tell them I'm going to live and beat this and its exhausting trying to explain im not.
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Jaycee,
Thank you for voicing what many of us feel. While I am fortunate that my cancer is slow growing, it’s not exactly a walk in the park. At four years into this I hurt, am fatigued and constantly deal with the fallout of medications. I’ve had multiple rounds of radiation to beat back the symptoms of bone mets run amok.And while I certainly want to keep going as long as I can, I have to admit to feel tired of the constant poking and prodding, bloodwork, scans, etc. Not to mention the weird symptoms that seem to defy explanation - scans stable thankfully (waiting on CT results currently) but weird pain persists that gets into my head...
Quite frankly nobody should have to deal with this but I also find it challenging to get others to understand what it’s like when you are facing death at a relatively early age (I’m 58). Even my mother doesn’t get it. And, as someone who is single, I too wonder how I will manage when the wheels start to fall off the bus. As she is just shy of 90, it’s likely I will outlive my mother but if not, should she really be saddled with being my caregiver at that age?
So no, it doesn’t feel chronic to me. At least here, in Canada, we have passed death with dignity laws. They need tweaking to remove some of the onerous rules around informed consent which becomes much more problematic once disease progresses but were are still in a relatively good place.
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cakes. I’m so very sorry for youfamily. Death is so complicated all the way around. It’s ripples re felt everyday. When you’re living through it. I wish you peace and serenity somehow.
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Thanks Jaycee, I appreciate the offer but hopefully we end up meeting well before that and under much better circumstances, like traveling on vacation.
As for DWD, I was a very odd child and was a fan of Dr. Kavorkian when I was only about 12. I just thought letting the patient decide not to linger and suffer in a hospital was best and never understood the mass objection to something so simple.
And as to chronic vs. terminal, it’s both, kind of. We never know which one we’ll be though and labeling MBC as chronic feels like an excuse to scale back research or lower ones level of empathy. I find it dismissive, like quit complaining, your fine and that impression is just unacceptable. On a personal level with minimal disease in my body, I realize I could do well on Herceptin for years but the addition of brain mets have me living 3-6 months at a time, so my reality is both.
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What an interesting discussion. I fully understand that for the vast majority of mbc patients, chronic is a terrible term. What some mbc patients go through just to survive is horrendous. Chronic implies that if you just follow the oncologist's plan carefully then you can just go on living in perpetuity. For a small percentage of us, that is almost true. I say almost because those of us in that position know that even if we follow the mo's plan exactly, progression can and does happen. However, whether we use the term chronic or not some of us are living fairly normally for long periods of time. My casual, totally unscientific observations on bco are that there are more long timers than there were when I was dx'ed over 9 years ago.
I certainly wouldn't want people to look at me and think I was representative of the majority of mbc patients and for those who do, I quickly disabuse them of that notion. But, for some of us long time survival and a good QOL is our reality. I was once told by someone on bco to not talk about how well I was doing so as not to give others the impression that mbc was easy and manageable for most. I don't mean to be insensitive to the condition of others but I don't feel like I need to hide my light either and take great pains to educate others about the reality of mbc and point out what an outlier I am. I have mbc as much as anyone else who has been dx'ed but it's important that people understand that mbc is not a monolith. I have seen tremendous tx improvements in my years. Of course, it's not happening fast enough for enough people and the ugly reality is still there. I just hope that there is room under the mbc umbrella for all varieties of mbc.
My luck, yes I consider it plain dumb luck, has been good but I never know what tomorrow holds. My best to all 💗
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Jaycee, a bit late response to “chronic illness” topic, I bet that lame author just tried to downgrade MBC for some reasons, reduce health care benefits or medical retirement? I don’t know, future will tell. They start planting seeds in platforms such Facebook with huge audiences, for this reason and many more I deleted my Facebook account long time ago, and wherever I saw such a b.s I just ignore those.... about DWD, state of California end of life option act is currently in effect since 2016, it follows Oregon model with few modifications, January 2020 former administration tried a lawsuit against it (!) but unsuccessful. Good luck. 🍀
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Sometimes I wonder if the "chronic condition" line was a way someone found for the health care providers to reframe this and manage in their own minds. I got that line from the breast surgeon who told me I was Stage IV and remember thinking what a pile of bs that was because if a form of cancer had truly, truly been reduced to a level of say, diabetes then that would have been splashed all over the news and the drugmakers stock would have been through the roof. Relative to other cancers (like everyone's favorite scary killer, pancreatic) MBC has more therapies and a potential for longer active medical management, but for patients, who think in terms of chronic like diabetes or RA, its anything but.
I do hope that covid and the cloud of mortality hanging over the general populace on a daily basis will now force some of these discussions about DWD into the open, in a wider range of states. But it is only through the organisational work like Jaycee and others are doing that it goes from a discussion to a debate to a reality. I applaud you for directing your energy that way!
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The same article keeps popping up. Here's the idea that gets me.
"In a study conducted by the National Cancer Institute, researchers found that between 1992-1994 and 2005-2012, five-year relative survival among women initially diagnosed with metastatic breast cancer at ages 15-49 years doubled from 18% to 36%."
Woopie! Maybe it's that people are getting so bad at math but 36% surviving five years means that 64% don't.
So it is only de novo, certain ages, certain years, and whatever "relative" means. Your aunt? Cousin?
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I agree Jaycee, not much to celebrate here, especially when you consider the age group and the fact that they’re likely to die 20 + years earlier than most. Also, I think the stats have risen mostly due to advancements in HER2+ treatments, so what about the other 80% of MBC patients?
Now, I happen to be in this group (de novo at 41) and I appreciate the improvement but it’s little consolation when I’m so unlikely to enjoy a 50th birthday.
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I am a visual person. So I think of the visual-----
100 women are in a room. All of them have MBC. In 5 years you look into that room again. 36 of those original ladies are left. 64 of them are gone---dead.
Am I one of the 36, or the 64?
Still a "terminal" diagnosis, not "chronic" in my opinion.
I am grateful that the current meds have increased the odds, but it is still sobering when you look in that room.
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Here is my new statement. I want to reach as many legislators as possible. So far, I only have the email addresses of the "supporters." They have a list of the "undecideds" but I can't get my hands on it ... yet. They seem to be afraid of what I might say.
"I have stage IV breast cancer. Metastatic. Terminal. I want to live as long as my body can sustain a good quality of life and die on my own terms with a minimum of suffering. I am not telling the bittersweet story of a loved one who died in a state where they did have a choice of how much suffering they had to endure and died a peaceful death. I am not even telling the heart-wrenching story of a loved one who died in our state where they had no choice of how much suffering they had to endure. This is MY story. I am the one dying. I am the expert. And I live in New Mexico where only the heart-wrenching story is allowed to be told.
The fact that I will suffer in the process of living the rest of my life and, in the end, dying is guaranteed. Cancer is a cruel disease. The symptoms of the disease are painful and the symptoms of the treatments are painful as well. Pick your poison. There is a delicate balancing act that must be maintained until the tipping point is reached. That is the point when the pain of the treatments overwhelms the pain of the disease. That is the point when unnecessary suffering must be endured if relief is not offered by medical aid in dying.
It all comes down to suffering. How much? How much suffering am I supposed to endure? And who gets to decide? Do you get to decide or do I get to decide?"
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I agree that though these are looking better now than 10 years ago for mbc survival, it’s still far from where any of us want these stats to be.
Jaycee, your question about who these long term survivors are is the 64,000 dollar question. Technically, I am not de novo as my met was an accidental discovery made 6 weeks after a bmx which staged me as IIB. Given that my met is an indolent grade 1, we know it was there at initial dx though there was no reason to suspect it. Thus far, the only answer I have as to why I’ve done well is simply luck of the draw. So, I am one of those outliers yet we don’t have any concrete explanation as to why. I did not choose to be an outlier nor do I follow any special diets, protocols or regimens, other than general good nutritional practices so I keep coming back to simple luck. And, I hate that. I hate that something has allowed me to have a fairly normal life yet I have no idea why nor can I “share” it with others. I am not saying we should throw a big celebration for the statistical increase in longevity among mbc patients as we surely have far to go, but however small it is a step forward
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exbrnxgrl, I'm not trying to make you feel guilty for surviving or to figure out why some people do and some don't. I myself have had MBC for five years (and possibly seven, same situation as you have, lung "spots" there at the begining, not called mets until later). But calling MBC chronic is just WRONG and medical professionals who do it need to be corrected (as if I could do that). Spreading that false info all over social media lets our friends and family wonder what the big deal is about. I feel it more and more lately. Even my nurses are doing it. They see their patients die all the time so what am I complaining about five years out? They don't say it point-blank but I feel it.
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Ah, I see. Yes, I do have a problem with the word chronic too. My mo has never used that word nor do I. As I wrote earlier, chronic implies that if one follows a prescribed tx path then you will survive. Of course we know that is simply not true. I just call myself an outlier. Take care.
PS: I am always trying to figure out why I have done so well for so long because I hope it will help others. This is why I participate in Nikhil Wagle's MBC Project.
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I'm also a bit late to the conversation, but I think a lot of how well we do for how long in the metastatic setting simply has to do with how fast/slow our cancers grow.
According to my doctors, I have a very fast growing cancer. It can sometimes grow about 1cm in a month when it's feeling prolific. I don't know why, it just does that, always has. Because of that, I blow through treatments more quickly. Every scan shows progression, never stability or regression. I have already run the gamut of the "quality of life medicines" only six months into my MBC diagnosis, and I just started IV chemo again just to regain some kind of control, hopefully.
So while I certainly do not begrudge anyone with MBC who gets years out of treatments, this does not feel "chronic" to me. For me the deterioration has been swift and jarring. But I'm still here, and maybe I'll still be here for longer than I expect.
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I hope I can jump into this "chronic"/"terminal" discussion without ticking too many people off. I hear you-those who get mad when MBC is minimized as a chronic illness, but for me it was extremely helpful at my first visit to my MO to have her say to me, "This can be 'like' a chronic illness now. You may live for several more years and we have many treatments to try." The other doctors who had seen me-breast surgeon, pulmonologist, hospital staff-treated me as a goner. I was very sick with pleural effusion and extensive bone mets. My oncologist was the first medical professional to give me hope. That was a very good thing for me to hear, especially when people with no medical training were telling me I would die in six months or 2 years etc based on one of their relative's experience.
I am well aware that my illness is terminal-most of the time it doesn't bother me when other people don't get it-it's not their problem and I'm glad when people think that I am doing well. I know I have been extremely lucky for this past 4 1/2 years-I feel good, I have side effects from my treatments that I mainly deal with through yoga. I'm not the same person as I was pre-cancer but my life is good.
Through the work I did as a pastor, I accompanied many people to their deaths. I saw intimately that no one gets out of this life alive and that most people go through immense suffering of one sort or another. For me, I will probably die of breast cancer but I could have a heart attack-one day I almost got run over by a car. I know it is likely I will probably suffer much more from breast cancer in the future but I am happy to be alive today. While my life will probably be shorter than I had planned, I saw that living to one's late 80's and 90's is really no picnic for most people. I am grateful that my oncologist didn't make me feel like my life was over just because I was diagnosed with MBC.
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I'm pretty sure I have instigated this discussion before. Terminal/chronic is mostly a matter of semantics. MBC is actually terminal and chronic at the same time. It just really bothers me when health care providers spread misinformation about MBC to the general public. I worry about situations where an abusive husband or boss gets ahold of it and uses it to their advantage. May be overthinking. My glass is not empty (really) but maybe only a quarter full.
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