A place to talk death and dying issues
Comments
-
So I was contacted by an end-of-life-coach that works with my care team. (Okay, that's not her real job title, but that's what I'm calling her.) Anyway, I can't help but feel a bit, I don't know, blindsided by that?
Not so much because of the news that I might be dying, although that is jarring enough as the realization hits me in different ways. But I think I was blindsided by it because if that's the case and I am dying soon, I thought my MO would just tell me, not outsource it to some random end-of-life-coach I've never met.
Maybe I'm overreacting, and maybe it's not meant the way I'm taking it. These things are delicate. It might be one of those things where the healthcare system is trying (and failing) to make us feel supported. Half of that stuff that is intended to make us feel better just makes me feel worse.
But I'm curious, has anyone had anything similar happen?
0 -
Buttonsmachine,
Your feelings are valid. I think the least the care team could have done is let you know that you may be getting a call from them. I would ask the coach how she (?) got your number. Then at least you’d know how it all transpired.
I am under the care of a palliative care group for pain management, but I found them and initiated the conversation. When my time comes, I’ll already know my end-of-life care team, so the idea is a good one. But not out of the blue. I would feel just like you do.
0 -
Booboo1, thank you for your reply.
I've had a little while to cool down and let it sink in. I talked to my other half about it too, and he said the same thing you did. They should have brought it up with me ahead of time, or suggested it as a helpful resource, rather than it just coming out of the blue.
I am already under the care of a palliative care doctor and a social worker, so I am honestly not sure what this end-of-life-coach (or "life coach") is going to cover with me. But overall the message from the end-of-life-coach had a very getting my affairs in order kind of feel to it, which is why it knocked me off balance today when it came out of the blue.
I went ahead and scheduled the phone appointment with the end-of-life-coach partly just to get some answers and clarity. I am going to ask what prompted this, because that is bothering me.
Overall I've been very happy with my MO and my care team, so this is a bit disappointing. As I said before, these things are delicate and it's probably hard to be in this line of work and not accidentally upset people from time to time... but still... I'm not gonna lie I shed more than a few tears about it today.
0 -
Soon after my diagnosis, I got a call from some kind of end of life planning service but it was connected to my insurance plan. And of course that made me suspicious that I would be tricked into signing a living will with them that would say I wanted to end my treatment so the company could save money or something like that. I guess that’s an extreme interpretation but honestly if I’m going to consult someone about a living will, I do not want them connected to my insurance plan!
Anyway, it pissed me off, especially because I was just starting treatment and focused on staying alive and how to best do that. Wasn’t ready to start planning for death at that point. So I told the woman that, and she tried to get pushy, and then I told her what I said above , that she would be the last person I would consult on end of life planning, and I hung up.
If this person was referred to you by your medical team, I agree they should have let you know to expect a call and should have asked for your consent. Maybe they have something helpful to offer, but if you aren’t ready or in the mood to deal with it right now, that’s okay too and don’t be afraid to do and say what feels right
0 -
buttons, to me, the call from out of the blue was out of line. I don’t think it was right in any way. We, as women with mbc, should not have to take the route of “oh, I know you meant well, but...”, trying to make others feel better about their insensitive actions. You’re right, this is a very delicate matter. People who are in the palliative care field should know better!
I would definitely let this person know your thoughts and feelings on their call to you about end of life matters. For a “palliative team” to assume they know what’s best for you is treating you like a child. I personally don’t want some stranger talking to me about personal matters before they get to know me. In my own time, I chose when to address end of life matters. And that took years! It was a little here and a little there, baby steps, something discussed with my husband, not a health care professional. The truth is, you don’t have to take care of any end of life matters if you don’t want to! The point of palliative care should be focused on making the patient comfortable, not for some goal-oriented health care workers to feel good about themselves that they made a patient get a bunch of paperwork together.
Just like Olma did (great job, Oma!), you can tell this person your focus right now is on treatment and staying alive and that you do not care to discuss getting your affairs in order at this time.
0 -
something i read a couple nights ago in a study just shook me: "fewer than 20% had an accurate understanding of their prognosis" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC48929...
another had a slightly better stat relatively speaking but still awful ""Half of patients with advanced cancer are not aware of their prognosis [13,14,15]. Patients with incurable cancer often misunderstand the palliative intent of their treatment and overestimate their life expectancy compared with their oncologists" https://link.springer.com/article/10.1007/s11864-0...
One of the things I've been thinking about is that there's a bias on these boards. Dead women don't post. So the unicorns, the outliers are over represented (just like people who recur altogether are over represented). Anyway. this is the death & dying thread so I'm assuming people here are ok with their prognosis but even on other Stage IV only threads, people have gotten upset at innocous comments such as something like 'wow I'm so happily surprised to see a liver metser at 5yrs survival' and someone got upset because that was too hard to hear, that 5yrs w liver mets is still an unexpected result... People ask for "positive" stories on threads. When I pm'd someone some stats - because it's getting to the point I feel I can't post them publicly on a thread - I was essentially told 'i don't want that. I want positive stories' I get the need for hope but I'm also not on board with the airbrushing of our realities.
so anyway. That's my thoughts this morning
0 -
Buttons, I am sorry you have been subjected to that. I haven’t quite known what to say as I am not completely familiar with where you at in terms of treatment but didn’t get the sense you were at the point of getting “the talk”. Now, Olma’s comment has me thinking that it may be coming from your insurance provider. Is this possible? You are still pretty new to stage IV so I can’t imagine a healthcare worker would think this was the time for that conversation. I have always been pretty clear about my illness and the anticipated trajectory but still balked the first time someone used the term palliative to my face (to be fair, it was only a month or so after my diagnosis - surgeon inserting a PleurX Catheter).
Moth, I hear what you are saying and am also a realist both in terms of my prognosis and the actual versus perceived efficacy of treatments. However, I do think that generally the stage IV folks on the board are pretty plugged in. I’ve been coming to the site for over four years now and, in terms of sensitivity, have found that issues arise when folks project their own experience onto the situation when they are coming from a place of limited knowledge or understanding. It’s particularly problematic when it is early stagers or, as you put it, some of the unicorns who have fortunately not had to face some of the more gruelling treatments. In the end, we will all likely make mistakes when we post but hopefully we can always try to be a bit thoughtful of other perceptions when we hit submit. Just my two cents.
0 -
moth,
I don’t frequent this thread because I feel out of place. I am in the unusual position of being stage IV for almost 10 years but not close to having to deal with end of life issues. You are correct, dead members are mourned but say little. TBH, even our unicorns, like me, are rare. The funny thing is I get quite a few pm’s asking me about my tx and what I’m “doing”. They are quite often disappointed when I say I have just followed my mom’s tx plan. I was already slim and ate a healthy but not restrictive diet. I have no secret protocol but I just decided to be as happy as possible and not perseverante on bc.
By it’s nature almost everything posted on bco is somewhat biased. Those who are worried about bc usually stop posting when test results come back benign. Only those diagnosed continue to post which might lead some to believe that everyone who is worried is eventually dx’ed. Of course that isn’t true.
I am not entirely sure if the bias can be tilted any other way. I do think it’s a good thing to give people hope but I personally also want the unvarnished truth. Hope shouldn’t preclude an honest understanding of one’s condition. Sometimes I think that those who only want to hear positive things are the most scared of all in that they can’t even bear the thought of the terrible possibilities mbc brings.
Dying is not on my immediate radar but I have no fear of it and understand both my disease and my mortality
0 -
Moth, I also agree with many of your observations here but it’s often challenging to navigate with respect to people’s feelings. Upon diagnosis, I dove in, read a lot and asked a lot. I’m a realistic but hopeful person, I don’t sugar coat MBC but I don’t want to crush others with my frankness either.
0 -
In the context of the current comments regarding the call from the end of life coach, I'm going to say that it's possible to be completely aware of your prognosis and still not be ready to confront it with someone who just called you out of the blue.
Or to not be ready to take those steps of “getting all your affairs in order". And, I think that's more than possible, I think it's perfectly fine.
It's even okay if everything (our so-called affairs) is not tied up in a neat little box ready for our death..
If you have material wealth or possessions that you want to pass on, ok, you should probably take care of that fairly soon.
And if you have strong feelings about when “the plug" should be pulled on your treatment, yes, it's good to start thinking about it and get it in writing as soon as you can.
But everything doesn't have to beperfect. Are we even going to pressure ourselves to “do" death and terminal illness perfectly? After everything else we've had to do in life?Nah, I'd rather live the remainder of my life happy and comfortable, doing things in my own time and my own way.
If you need time to adjust, give yourself time. If you need time to grieve before you talk to a stranger about this or before you get everything organized or committed to paper — it's fine.
0 -
ma111, who started this thread, put it like this: This post is for those of us with concerns and issues about death and dying to talk about them. IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE. We do not need people telling us to live life or to hear that other people have lived a long time, we have concerns. We are living life and would like for our diagnosis/prognosis to be changed. However, we are stuck with it and not in denial.
I do my best to be sensitive to how I phrase things on other threads. Sometimes I blunder but it's never intentional.
But on this death and dying thread, we're here so we can discuss matters that many times our loved ones are not comfortable with.
I agree with Sadieservant that people on the stage iv forum are pretty plugged in.
I also agree with Olma, it's not about doing death perfectly.
I'm not a fictitious unicorn. I am 100% a real person and yes, an outlier. But 10+ years ago no one knew my future. I'm not teetering on the verge of death at the moment, but I've had many ups and downs since being diagnosed. I knew women who had died of breast cancer, so I was very aware of what a stage iv prognosis meant.
Some years back, I asked the question “how many are we?" to find out if anyone knew the number of stage iv members, and it was generally about 350. And of course the numbers change but by how much? I don't think by a lot. No one is claiming members take an only scientific approach to mbc. We learn also from stories shared.
0 -
“ I'm not a fictitious unicorn. I am 100% a real person and yes, an outlier and proud of it. But 10+ years ago no one knew my future. I'm not teetering on the verge of death at the moment, but I've had many ups and downs since being diagnosed. I knew women who had died of breast cancer, so I knew the reality what a stage iv prognosis meant.“
Thanks Divine. That's pretty much how I feel. Despite almost a decade of having an easy time withmbc, I know the reality could change in a heartbeat. We don't get to choose the course of our mbc and we don't why two people with the same dx can end up on different paths. MBC will get most of us and I am very cognizant of that so death and dying are probably on the menu for me too. Hope? Yes, I appreciate hope but not false hope. Despite my unusual bc history, I am a pragmatist and until there really is a cure I know that my long run can be shattered at any moment. I don't want it but I accept it.
0 -
Yes, I think first of all, it’s the job of the doctor and the medical team to communicate with us about our prognosis and then refer us to mental health professionals if needed. It isn’t the job of peer support groups, like this forum, to give the scientific info or statistics on outcomes, or making sure people “get” that they’re terminal...although if we have reliable info we can certainly share it. If many patients aren’t aware, that’s the fault of providers alone.
There’s a delicate balance to strike when newly diagnosed Stage IV patients come here looking for hope. False hope isn’t optimal but I don’t think doom and gloom is either. I have been very grateful for everything Divine and exbrnxgrl share here and it’s good to know “long timers” exist , whether or not I wind up as one.
Ironically, when I was first diagnosed, my doc and social worker were cautioning me that the bias in online support groups tended toward patients having a hard time being more active in the groups than people who are doing ok and living life.
So, I don’t know which way “we” are really slanted. True the dead dont post, but with the last active date on posts, we can see that many are no longer active who once were. We have In Memoriam threads and this one! As well as the ladies who unfortunately ARE struggling right now. Not like they are not just as visible here too.
We are just here to share and give support, and I agree, Divine, we don’t haveto do it perfectly.
0 -
Thank you Olma, DivineMrsM, and Sadiesservant for the validation and support of my feelings about how it was handled. I think that was what upset me the most. Also, Olma, I'm so glad you told that person sent by your insurance company to go away! I worry for others who may have fallen for that. What a difficult world we have to navigate with cancer as it is, and then they make it so much harder for us.
Regarding the end-of-life-coach: I did talk to her and get some answers, and oh dear. Apparently they contacted me as part of a center-wide initiative to normalize end of life planning. While I am actually on board with that in theory, they should have opened with that. I spent a couple days thinking my MO referred me in particular, to this person in particular, to get my affairs in order at this particular time, because of particular recent developments with my disease. (For context, my last PET scan showed a mixed response to chemo and a pericardial effusion). But no, it was part of a center-wide initiative. So that's a relief, but I hate to think of every MBC patient at my center being unpleasantly surprised in this way. The idea to normalize end of life planning is probably good, but the execution of it was quite the face-palm, in my opinion.
Moth, to tell the truth I am not surprised that so many people have an unrealistic understanding about their prognosis. I think as this situation demonstrates, communication is often not a strong point of the medical community. Some doctors avoid these uncomfortable conversations, and some patients do as well. I'm not sure what the answer is. I think many people do hope that they will be the outliers and the exceptional responders. And in a sense, who can blame them? But as Illimae and Ebrnxgrl said, I think it's possible to have hope and realism at the same time.
I think I have been mostly a realist with my breast cancer, partly because that's just how I am naturally, and also because over the past five years I keep finding myself on the bad side of good odds. I have since learned that my cancer belongs to an unusually aggressive and rare-ish subtype that makes up less than 5% of breast cancers. IntClust6, to be exact. My cancer grows faster, resists treatment, and is just generally nasty in ways modern medicine hasn't been able to deal with yet. I think outcomes in breast cancer have more to do with the biology of our cancers, and how our cancers respond to treatment than anything we have direct control over. But in spite of that I do still have hope - to me it's part of living in the now - it's not over till it's over, and that's the truth. But that doesn't mean I am not still a bit fragile, and that I can't get thrown for a loop by bad scan results or end-of-life-coaches.
Anyway, I really appreciate everyone here. It's hard to talk to family and friends about these things because they become sad and want to stop talking about it, and the care team is made up of people who, at the end of the day are healthy and don't totally get it. Thank you everyone.
0 -
moth: No one wants to confront their mortality. The younger the person the harder it is. I don't believe any MBC ladies here (or more accurately on the other threads) think they will be cured. But hoping to have 10 years instead for ten months is human. And there are those who do make it 6, 10, 17 years of MBC with a reasonable QOL. So is it wrong to say "maybe that will be me"? Yes, get your things in order, make a list of stuff you want to give to other people, make a play list for your Celebration of Life" if that is your thing then put it all in a box. Realism and hope. How many people have related stories of the professional telling them they have six months and here they still are 2 years later?
I, for one, am not going to scream at someone "Get over it. You are going to die ----- probably sooner than you thought" The ugly truth will happen. Let them be. It might not be realistic but it gives comfort to have hope to live just a little bit longer.
0 -
Would there be anyone with an MBC diagnosis who does not understand it is a terminal diagnosis unless you live long enough to die of something else. I just want a pain-free comfortable death so I would get the hospice involved. My daughter is a nurse and in the hospital when she use to work in they are not allowed to get the palliative care team involved unless the patients agree so she had a patient who was delirious and would not have the palliative care team and was looking for more treatment his wife was very upset so they sent him home and asked his wife to try and talk to him about getting the palliative care team involved my daughter was so upset. I would hate to end up like that. I did have one experience that I thought was almost funny my oncologist has another doctor assisting her who started to cry when she was going through my diagnosis I was nearly going to go it's alright dont be upset I am alright!, what is to be is to be nothing we can do about it.
0 -
There, not a lot, but few who don’t believe that stage IV is terminal. I think this might be a result of initial shock as well as the messages we receive to be fighters and warriors (if we progress and/or die we fight hard enough 😱. Heck people tell me all time that the reason I have done so well is because of my positive attitude. When I try to tell them that my attitude has made my life easier, but it won’t change the course of my disease, they just shake their heads as if I don’t know what I’m talking about! We’ve had members post about how they will never give in, that they know they can beat stage IV etc. and they don’t want to hear/learn anything to the contrary. That always struck me as odd because although I appreciate their hope, I always like to miss optimism with pragmatism
0 -
Olma, I have been thinking a lot about what you said about having everything in order. It’s sage advice not to stress about having everything perfect when we go. But gee... it’s hard to let go of our need to organize!
I think this issue is probably the biggest stressor for me. I live with my 90 year old mother, no spouse, no children. She’s not a hoarder but, as a depression child, she finds waste hard to tolerate. She also got into collecting when my father was ill and, as a result, we have a LOT of stuff. Decluttering is a slow process and I worry about what will happen when I go. It’s a lot to expect of an executor to deal with it.
Exbrnxgrl, your story is truly inspiring. Has anyone ever suggested you are, in fact, cured? You would certainly fit the oligometastatic criteria that has become a focus of treatment with curative intent more recently. Hoping that’s the case for you and you live a good, long life!
0 -
The very first thread I read here on bc.org was exbrnxgrl's 'Life Does Not End with a Stage 4 Diagnosis', and that helped me breathe again. The next thread I read was this one, and that felt like a good balance to me.
I was referred to talk with palliative care right after receiving my MBC diagnosis, but my husband and I had already talked to them for HIS cancer diagnosis, and it felt ridiculous to talk to them again. Also because my husband had told them he was upset and worried at that time about my pending bone biopsy (which did reveal MBC), and he was crying, and the doctor told him, "She will be just fine". Now, perhaps the doctor meant I will be just fine (spiritually?) no matter what happens, but it felt dismissive to my husband's pain, and also, duh, I'm not just fine, good grief. So I will not be talking to that particular doctor whenever I choose to speak with palliative care again. Also, my husband was told his prognosis was 12 months to live, and that was over three years ago, his cancer is growing more slowly than originally thought.
Buttonsmachine, I can't imagine someone just randomly calling to talk about end of life stuff, I'm so sorry you had to experience any additional anxiety or fear because of that.
0 -
sadiesservant,
No, no one has ever used the word cured with respect to my situation. I don’t even know what the definition of cured would be at stage IV but yes, definitely oligometastatic. Curative intent was not mentioned in conjunction with my treatment and frankly, I am glad. The reason I say this is, again, how do we know when or if we are cured at stage IV? 5 progression free years? 10 progression free years? Personally I am fine without needing to use the word cured.
Thank you for saying my story is inspiring but I don’t feel right taking any credit for it. It just happened . As I’ve said many times I have no special diet, regimen or protocols and I’m not chasing down alternative or miracle treatments. I haven’t ever had chemo (yes, I know there was the port installation and the pneumothorax, but I never ended up with chemo and I still have the port). And although I shouldn’t, I feel guilty that the somewhat passive course I’ve taken with my tx has been so successful when others who try in more active ways have struggled.
I announced my upcoming retirement at a staff meeting this past week. Since it’s been almost 10 years since dx, more than a few newer employees were stunned. Someone even asked if my oncologist could be wrong 😑, my least favorite question based solely on my healthy appearance. Honestly, I am very grateful for the time I’ve had but I want to know why
0 -
Sadiesservant, I agree that it can be a burden to leave a lot of “stuff” behind for loved ones to have to sort out and dispose of. The ideal of course, would be to have everything all done and taken care of before we make our exit from this world. It may also be a kindness to our grieving relatives if they’re the ones who will have to do it.
But, if it doesn’t work out that way, or only some of it gets done, it isn’t the worst thing in the world. I think we shouldn’t feel pressured, stressed or inadequate if we aren’t getting things done on a strict timeline.
When we feel able, we may even get some pleasure and peace from that act of putting things in order. But we need to be kind to ourselves also, and we can face doing things when we feel strong enough to do so.
SF-Cakes, you make a good point, “prognosis” is not written in stone, doctors do not have the ability to see the future. I personally don’t like expiration dates.
I must say, my own MO was very optimistic but not unrealistic, at the time I was diagnosed. I think based on my subtype, response to treatment and bone only mets, she gave me the correct perspective on my disease.
0 -
buttons, you say it perfectly about your care team: "at the end of the day they are totally healthy and don't get it." And that is glaringly obvious with their bumbling of the call you received from them. I give them a failing grade for their attempt at normalizing end of life planning. They really did not do enough planning themselves on how to introduce the subject in a sensitive manner when making calls.
They have an uphill battle if they think they'll make any inroads getting people to address end of life planning. Rightly or wrongly, I'm sure many do not consider it a priority or want to think of such matters.
We all bring our own experiences to the forum. Yes, I know both adults and children whose lives were cut short by cancer. But another experience I have shared before is that of my younger brother. Back in the late 1970s, when he was 18, he was diagnosed with cancer spread through his body and given a year to live. He had surgery, harsh chemo and radiation. He survives to this day and lives a full life. And an older cousin of mine, still living, was diagnosed back in the 00's with ovarian cancer which she further explained with a smile by saying, "you know—the kind that kills you." Their experiences certainly allow me to see the possibilities.
Sadie, it has to be challenging living with your 90 year old mom!
SFcakes, wow, I did not realize you husband also has a cancer diagnosis. My heart goes out to both of you!
Exbrnxgrl, I think people try to oversimplify the complicated topic of metastatic cancer by insisting a positive attitude can remedy the situation.
Olma, I found it to be true that having some end of life planning in place gives me peace of mind. Instead of loved ones regretting they didn't know my wishes, they can at least be comforted knowing they carried them out.
0 -
Your post is very helpful. I want to move to palliative care then to hospice when it's time.
0 -
Hi Buttons,
We were on a Xeloda post together in ‘18. I linked over to this post to see how you are doing. As always, your openness and strength are a gift. Thank you for being on this forum. Stay strong.0 -
Hi Chelsea, it's so nice to hear from you! I responded to you on the Xeloda thread. :-)
0 -
I'm on my third and last chemotherapy regimen. I will have scans in 3 weeks to determine if it has worked at all. I have decided not to attempt a fourth regimen or to enrol in trials. I haven't experienced pain to this point and have no real loss of function other than a bit of fatigue. That said, I'm really having difficulty with the prognosis. My onc says 6 months with mets to bone, liver, and lung. I've read studies that indicate oncologists are overly optimistic by a factor as much as 3.5 (which would only give me 8 to 10 weeks). How have you dealt with the anxiety of not knowing even roughly how long you have? My preps are almost finished I think (will, power of attorney, advanced care directive, DNR order, cremation arrangements, palliative care registration/interviews, finances transferred to DH, and a ten pager on my life for my family). I find no comfort in being prepared. I can't stop thinking about the end days. I often find myself thinking about doing something and then just saying 'Why bother?' Anyone experienced this? Thanks, Tracey.
0 -
Tracey--I can't imagine the anguish you are feeling. I suppose one way to look at it is this; NO ONE knows when life is going to be over, not even doctors. Unless a person decides to take matters into their own hands, there's just no way to know. I hope that you can find some peace within yourself and live whatever time is left with some amount of joy. It may be that you have a lot longer than anyone predicts, and my sincerest wish for you and all of us is that we are not in pain and not too terrified by the process.
I'm not in the same place yet, but we will all get there whether by cancer or some other means. "Nobody gets out alive." I have spent some time watching youtube videos about end of life; I find it oddly comforting that many caretakers report the person slipping away seems to "see" loved ones that have gone before. It gives me a little bit of comfort to know that when leaving this world I will possibly see my parents waiting for me... even if it's simply a dying hallucination. I am not a religious person so I don't believe any any afterlife or what have you, so I'll have to take whatever comfort is available to me when the time comes.
______________
ETA--for some reason I totally overlooked that I have posted in the Stage IV section, and I apologize. If this post needs to be removed I will be happy to delete.
0 -
Tracey, a big 10-4. Within a couple months of diagnosis I prepared a living will and proxy, I wrote down the passwords/important stuff for my beloved so he could find everything when I'm not there to tell him where everything is. I have a non hospital DNR signed on the fridge that palliative care had given me when I was getting my MM ( weed, lol) card, but haven't signed the big DNR but will when I stop treatment (after Ibrance fails me, like you I have a point where I'm saying enough). Being prepared with the formalities gives me comfort in that my beloved will not be scrambling but it doesn't give ME as a person internally comfort because like you, I cannot stop thinking about the end days. How it will play out, what will it feel like, will it take a long time, am I going to be sufficiently drugged up...will I truly be ready when my number is called...all kinds of things. Sometimes there is a hesitation to plan ahead or even commit to something because you wonder, will I be able to finish it, will I be able to enjoy it, I'm scared about what's happening to me. I've had to make appoint of saying...Dang it, you know what I do have limited time, and I don't know how long I have but I deserve to have some good memories and experiences and worrying about what I do not know will not add an hour to my life. Having said that, I don't think I have met anyone yet able to master that anxiety monster that crouches behind doors and under furniture to remind us of our diagnosis. I think this part is very individualized in how to cope. Right now I give myself permission to let myself feel whatever way I need to and work around that. Sometimes just giving myself that permission lightens the load and sometimes I'll be able to push back the anxiety monster enough to get out of the "grave sitting" funk. And then there is no holds barred rally for a time. I will laugh, I will enjoy that piece of cake, I will make memories with people I love, I will push myself to enjoy life, because that's what the treatments are there for, to let us do that. I don't stay in that place long, sometimes its short spells before everything loopty loops again. However, understanding you might or might not be ending treatment soon I would make a list. Mark it Plan A and Plan B. Plan A, scans show response, if you heard that news, what would be your response and what would you want to do? Plan B, scans show progression, treatment stops, if you heard that news, what would your response be and what would you want to do?
Hope this was helpful a bit. Let us know your thoughts going forward
0 -
I have thought about this topic a lot- deeply, darkly, with attachment, with letting go and it is complicated and also a crapshoot.
With cancer there is a lot of shame and blame- lots of metaphors set up to blame. My MO told me 10 years ago when prognosis looked bleak (35+ positive nodes, bliateral etc) that we all have a black cloud over our heads- mine is just bigger-no one knows- he said to treat as if you are going to live a long time- others along the way were more discouraging- they had an algorithm in their minds that wrote me off. those people stole hope from me and I really had to think about what hope is- not false hope which I am assuming you define as deceitful- hope to support being on the optimistic side of the stats. I love hope.
I struggle with should I buy that car? that sewing machine? promise a friend I will go on a trip- does the person who has a sudden heart attack worry that they didn't make it to Japan as promised? I did- as if I was held to a higher standard to know and deserved less since my prognosis "might" be poor. I actually had a friend who said after a day together -"I hope you feel that one of your last days was spent wisely". (I thought- her spouse might die before me- and boy will she be pissed) that was 2 years ago.
It's why I don't tell people I have cancer anymore- people without cancer can't really fathom living with cancer- although we all have black clouds. I was telling a friend of mine (who is a therapist) that therapy didn't seem helpful to me- she said maybe you should just have lunch with someone who also has cancer and talk to them- I think she is right. To be able to listen without writing you off or judging you.
My MO says she has patients where literally nothing works, and she has others where all the drugs work- for awhile. We can't be guilty survivors because the treatment worked or shamed because the treatment doesn't work- it is not our fault or in our power. it's a random crapshoot- hopefully to be figured out someday.
As far as getting rid of your stuff- this same therapist told me if it is painful for you, don't do it- it won't be painful for someone else- let them do it.
Hugs and serenity
0 -
Tracey, yes, I have experienced this.
I wanted to stop with the 1st chemo as I was so sick and had long days in bed, ie, no quality of life. It will always be your decision when to stop.
My daughter begged me to keep trying and to fiinish. I did.
Sometimes I wonder if we make decisions too soon when we are at our lowest..physically, emotionally, mentally.
Recently, my depression kept me in bed. If I had blue pads, I would never have left the bed. The grim reaper was on my shoulder and just would not leave. Was done.
I got help from palliative care, meds and counseling. The counseling helped me to come to terms with this cancer reality and gave me strength to try coping strategies and just talk it out with a professional. I am back and ready to keep going.
This is me. Find your own strength and make the best decisions for you.
We care and want you to live your best possible life while enduring a horrible disease.
S
0
