View Full Version : Terminal illness. What would you do?
Thinking about Valarie Harpers situation got me to thinking - if I were seemingly very healthy, fit and feeling good but were suddenly diagnosed with a terminal illness, one that only had a survival rate of 10% or less even with very agressive treatment (surgury, chemo, radiation, etc..) what would I do? Would I tell friends and family? Would I try any treatments even if they probably wouldn't work and left me very ill during the time I had left? Would I get into debt or spend all my savings and assets in search of a cure or for treatment if insurance didn't cover it? If I were working would I quit to do some things I always wanted to do? Would I go out in search of some "miracle cure" or just go gently into that good night?
For myself I probably wouldn't tell family or friends until I started feeling ill or needed help. I wouldn't do any treatment that made me ill feeling. I wouldn't go into debt or use my savings or assets to pay for treatments. I would quit my job or whatever was holding me down and start doing as many of my "bucket list" things asap. I wouldn't go in search of a miracle cure.
So what would you do? Do you feel it is irresponsible or mean not to tell familiy members or friends? Do you think it's wrong not to try everything possible treatment-wise and/or cost-wise to get better even if there is only a small chance? What percent of survivability would you need to do treatments 20%? 50%? higher? And would you do anything drastic (like sell the house and run off to Fiji?) before the end?
Gardenarian
4-10-13, 2:22pm
When I think of terminal illness, for me the first thing that jumps to mind is melanoma, as I have already dealt with skin cancer once. If I had less than a 10% chance of survival, I would not go through the whole radiation/chemotherapy route (of course, I might change my mind when the time comes...)
I don't know if I could name a percentage number where I would be willing to go through more medical treatment ...in real life, there are so many variables that doctors are usually unable to tell you what the chances are. I would hope I had a doctor I could trust, and rely on their advice.
I would definitely tell friends and family members. I have had some pretty major medical problems and have found their support incredibly helpful. Heck, I'd tell everyone.
If only a "miracle cure" was possible, I would try some radical approaches to healing, but not expensive ones. For example, fasting has been shown to be pretty effective for many cancers. I would try alternative medicine, but I would not spend a lot of money.
I would quit my job immediately and concentrate on spending as much time with my daughter as possible.
The more people in my life that I have seen die, the more I think we should take the same approach that we take with out pets. My mom lived way past her time - if she had been my dog, people would have said I was cruel to keep her alive. I would hope that I would focus on quality, not quantity, of life.
I don't have a bucket list as such, but I would like to live to see my daughter grow up, and write a novel that I am proud of. No running off to Fiji. I'd just want to spend as much time in nature with my dh, dd, and dogs as I could. (I feel like I already live in the best place on the planet, so.)
[Great question, Spartana!]
I pretty much feel the same way you both do but would add that I would immediately investigate hospice for all the support they can give. They would help with the quality of remaining time. We all are going to die at some point and I would rather go gracefully.
I don't really have much on my bucket list but would enjoy some time at the ocean on the beach just listening to the waves.
I believe in taking a reasonable course of treatment, but I agree that if it gets to a certain point where I'd be just drawing out the inevitable, I would hope I'd be able to recognize that point and go with the flow of life and death.
I feel my family deserves the truth, so I would tell them.
Here's my bucket list, which I wrote about in my blog (http://silententry.wordpress.com/2012/04/29/whats-wrong-with-bucket-lists-41-2/):
My Bucket List:
Be here now.
Gardenarian
4-10-13, 2:58pm
Love your bucket list Catherine!
flowerseverywhere
4-10-13, 3:07pm
I would focus on family and friends. After a life of working as a nurse I would be quite careful what treatment I would go for. Certain cancers for example have an excellent five and ten year survival rates, but some have a 10% chance of a one year survival rate and that would certainly affect my de ision. I would create something for everyone to remember me by. Maybe a book of drawings and photos for each grandchild, letters to be opened after I pass etc. I have no desire to run off to travel, but instead to get my affairs in order and make sure my loved ones would have a chance to say goodbye.
awakenedsoul
4-10-13, 3:12pm
I would probably take the least invasive approach. I don't think I would travel around trying last ditch treatments. I was surprised that Farrah Fawcett did all that when she had cancer. I don't even go to the doctor, so I guess first I'd have to go to get a diagnosis. I would probably get my affairs in order, maybe even sell my house. I would find homes for my pets, and enjoy each day. I'd keep knitting, doing yoga, growing food, and keep my life as stress free as possible. I did a lot of traveling when I was in my twenties and thirties. I might take a trip to Europe and to Australia...
My Bucket List:
Be here now.
Exactly - “Do every act of your life as though it were the very last act of your life.” - Marcus Aurelius
Now, if I knew with moral certainty that I was going to perish quite soon from some terminal disease, I might be tempted to meditate a bit more on Derrick Jensen's Endgame: Resistance and make up a short list of Needful Things To Be Done, and get to work.
Step One: Book my tickets to India and Africa!
I work very hard to live life deeply each day, focus on activities and friends who are most important to me. Sometimes it's showing a friend how to crochet or a That 70s Show marathon on the couch with my husband :)
My bucket list is very, very long and I have been working on it for years. In 2006 I trained for and ran a marathon. I've learned to surf. I'm well on my way to being a successful fiber and metalsmith artist. All the wills and other paperwork are done. If I am smucked by a bus today, that would be ok because I have lived as best I know how with few regrets. My husband knows this.
I'll never finish my bucket list. Opening the first bookstore on another planet is no longer a practical idea nor do I think I'll live long enough to see that spaceport built :)
As Catherine wrote in her blog, a bucket list is personal. You must create your own. And live it now, BEFORE you get the terminal illness news.
Love the bucket list and living each day as though it is your last. Cannot be sure of doing anything until I actually face the reality which I hope that we all don't.
...
For myself I probably wouldn't tell family or friends until I started feeling ill or needed help. I wouldn't do any treatment that made me ill feeling. I wouldn't go into debt or use my savings or assets to pay for treatments. I would quit my job or whatever was holding me down and start doing as many of my "bucket list" things asap. I wouldn't go in search of a miracle cure.
Same here. Likewise, I don't think it's irresponsible or mean to not tell family or friends right away. It's your life, and your decision on how much you info you want to provide, and when. It's not like telling them will change the outcome, so this way you can continue living your life as normally as you'd like.
fidgiegirl
4-10-13, 9:06pm
I have a cousin who did not tell that he didn't expect to survive his cancer and everyone thought since he was young, etc. it would be all fine and then one day he suddenly died. He knew, but didn't tell his wife or parents. I don't know why, but maybe he thought he would still have a chance to tell them later? I found that so sad - just such an unnecessary surprise for them.
Blackdog Lin
4-10-13, 9:20pm
This is an awesome question Spartana. Definitely thought-provoking.
(and I did 3 paragraphs about what I would hope for. But it turned out to be too personal, so I backspaced. Joyful friends and dysfunctional family. Difficult "to put it out there", you know?)
Don't believe in a bucket list (besides the fabulous "be here now").
Though I have told my husband my obit will never read "fought a courageous fight against cancer". I will be the biggest baby wailing against all that is unfair in my life/death, begging for drugs the whole way. And I'm cool with that!
It's easy to speculate as to how one might conduct themselves in the event of a terminal illness diagnosis, however, actually living-out ones last and final wishes and dreams is another issue altogether.
People who I have known (who got sick and died) almost always were too sick to live-out their last and final days doing what they always dreamed of, as for the others who had a measure of grace on their side where they were still able to function in a satisfactory state, depression sank them, and for the remainder, the ones who were gifted with the strength to ensure family members and loved ones came first, those people were too busy planning and organizing things in preparation for the end.
It's realistic to believe that one should be so lucky to live-out each day as if that day is your last, but for most working-stiffs who struggle day-after-day to reach a comfort-zone related to financial security, doing such is most unrealistic IMO. My husband and I have a bucket list of dreams and ambitions we will never see in our lifetime, and although we have made peace with knowing those dreams and ambitions will never come true, it still leaves us dreaming and wishing, so I for one can attest to the fact that we aren't living each and every day as if today is our last, because we can't. Neither can a majority of others.
As for myself carrying on with a terminal illness, I don't even want to think about it. I can only pray that I am taken quickly and painlessly so I don't suffer like those who I have witnessed.
ApatheticNoMore
4-11-13, 1:38pm
Yea, and also a terribly unpopular idea, I'd probably fight for treatments that might mean I would live. Of course that would all depend on how low the chances were, how much physical (or even mental) pain I was in etc..
Live each day as if it was your last .. if I knew with utterly certainty today was my last day and that there was nothing I could do about it, theres no way I'd commute an hour into work and work today. Does that mean I shouldn't go to work any day? Hey, I like that plan ... :)
Live each day as if it was your last .. if I knew with utterly certainty today was my last day and that there was nothing I could do about it, theres no way I'd commute an hour into work and work today. Does that mean I shouldn't go to work any day?
If you don't find your work deeply satisfying, yes, it does mean "don't go to work".
I had a good friend I worked with. Super-genius guy. In superb physical condition. Climbed Himalayan mountains without oxygen for fun. Full of life. He walked past me one fine day, stepped into his office, and died, in his mid-30s, of a burst blood vessel in his brain.
I retired about 2 years later, in my mid-30s. This isn't your practice life, you don't get a "do-over" at the end. Do what you love, now, because you could be dead without warning 5 minutes from now.
When I first read about Valerie Harper, I thought that maybe she was fortunate in knowing just how soon her life would be over. She could do the things she wants to do, if she's able to, before she dies. The rest of us just put things off, thinking we'll have time to do it all. For many of us, the end comes unexpectedly and we leave with things left undone.
I often wonder why I'm wasting time not doing the things I'd like. Hopefully i won't be lying on my deathbed full of regrets.
ToomuchStuff
4-11-13, 7:19pm
Quality of life, over quantity of life for me. Growing up around death (funeral business, CHILDhood friend with leukemia lots more) I do not fear death, but pain. (been facing down a gun barrel a few times in my life) I would certainly be asking about pain management and how long I would be functional, so I could get things done (pay for my cremation, things I don't think should be done, during the grieving period). Then it would depend on what I was dying from. (bone cancer in the legs, probably not going to run a marathon) So no answer is all encompassing. I have lost two friends to cancer of the esophagus, one spent as much time with family and friends as possible, while the other went VERY public with one of his life's works, and trying to inspire others to do so. (he did and still does inspire to this day, RIP)
I would hope, NOT to be like a relative of mine, who asked me to kill them. Or like an 80 year old friend, who shot himself one night, and awoke his wife (who had no idea, and this was Christmas time).
Spent enough time around Hospice (known over 20 friends who died from brain tumors), that I know it is your LIFE that means something, it certainly shouldn't be your death.
Don't believe in a bucket list (besides the fabulous "be here now").
Though I have told my husband my obit will never read "fought a courageous fight against cancer". I will be the biggest baby wailing against all that is unfair in my life/death, begging for drugs the whole way. And I'm cool with that!
I could have written this, having had the same thought.
Since I don't have minor children or even children at all, my sole concern is about me. I can't envision that I would "fight" and would want lots of numbing drugs, and really that's the main "fight" I would have, locating a physician who would support that.
DH is a well adjusted, self sufficient man and would be fine, no need to drag on a terminal illness once there is pain and discomfort just for him.
Though I have told my husband my obit will never read "fought a courageous fight against cancer". I will be the biggest baby wailing against all that is unfair in my life/death, begging for drugs the whole way. And I'm cool with that!
chrissieq,
this made me laugh!
Wildflower
4-13-13, 3:24am
I would make sure I let everyone that was important in my life know how much I loved them... I think they already know, but I would still want to do that. I would write them all long loving letters, and I hope they would keep my words close to their hearts always...
Love...is all that is really important in this lifetime.
I have a cousin who did not tell that he didn't expect to survive his cancer and everyone thought since he was young, etc. it would be all fine and then one day he suddenly died. He knew, but didn't tell his wife or parents. I don't know why, but maybe he thought he would still have a chance to tell them later? I found that so sad - just such an unnecessary surprise for them.
This does seem a little cruel, but at the same time I know some people need all their resources to handle their own serious illness. Maybe the idea of having to also handle grief of family and friends, etc. before he died was more than he could do.
Not like it's a direct analogy, but I've known more than a few colleagues at my large workplace who announced their retirement only to their boss and maybe a few very close co-workers, and then they were gone a month or two later. No card, no cake, no nothing - they were there for 20-30 years, and then gone. It's how they wanted to do it, but the rest of us in the outer circle were caught by surprise.
People who I have known (who got sick and died) almost always were too sick to live-out their last and final days doing what they always dreamed of, as for the others who had a measure of grace on their side where they were still able to function in a satisfactory state, depression sank them, and for the remainder, the ones who were gifted with the strength to ensure family members and loved ones came first, those people were too busy planning and organizing things in preparation for the end.
.You're probably right Mrs. M that most people don't find out about a terminal illness until it's too late to do all those "bucket list" kinds of things. Or if they are well enough then they may be busy making arrangements, etc... for the end.
But I know a couple of people who, due to routine annual physicals and testing, found "something" that was likely terminal while they were very well feeling and had deal with these kind of issues - tell family and friends? do the bucket list or do treatment? etc... For me it would be easy since I know I wouldn't tell friends at the beginning and only have one family member (sister) and probably wouldn't tell her until I had too. Plus I already have all my things in order, including cremation arrangments and paid for, so all that is left would be the decison of the bucket list or the "maybe useless" treatment. I definetly wouldn't let sadness or depression take hold if I only had a short time remanining. Would fight that one tooth and nail!
BayouGirl
4-20-13, 12:19pm
I would make sure I let everyone that was important in my life know how much I loved them... I think they already know, but I would still want to do that. I would write them all long loving letters, and I hope they would keep my words close to their hearts always...
Love...is all that is really important in this lifetime.
This.
In the end, it is the love that you have for people that lasts and the way you make them feel. I have kept journals thru my life, for my son, to tell him how I loved him and to record the funny things he said and did. Those journals were lost to Katrina. One of my most priceless journals is the one of my life with my late fiance. How wonderful to have all of those memories.
Bayou Boy and I tied the knot last month, beside a bayou as our grandkids waded in the water, getting muddy and catching frogs. So now I have a new husband, 3 amazing stepkids, wonderful grandkids and a whole new life to write about and I need to do that. Thanks for reminding me of that. I should be writing about those things so one day when I am gone, they will have those books to remind them of the way we were and how we loved to laugh.
I wouldn't fight it if I had a terminal illness. I would spend my last days as I have lived my life, with my loved ones, showing them and telling them that I love them. I have to say that I do make a point to tell them that I love them, even in texts or as we talk about things. My last words to my late fiance, before he died suddenly overnight were "I love you". That gave me great comfort.
I think of the people lost in the West, Texas plant explosion. I can only hope that their loved ones have that same comfort.
People wonder why I am so laid back, not getting mad or stressing over kids messing up stuff or BayouBoy being Mr Cranky. God knows he was on my last nerve 2 nights ago, fussing over stupid stuff like a stale taco or no tomatoes. He's not really mean, he just loves to be loud and be indignant about stuff, just to get a rise out of me. I'm sassy and talk back and we laugh. That's our way. But I rarely get really annoyed or mad because even if he is jumping up and down on my last nerve, I know I am still so blessed to have him there doing that and that somewhere else on earth, there are thousands of people grieving, wishing that they just had one more day (or even one more word) with a loved one who has passed away.
domestic goddess
4-20-13, 12:58pm
If I were really terminal, regardless of the exact nature of the disease, I would opt for palliative care only. "Terminal" is just that, and I don't want to just prolong my death. I would like to think I would keep it to myself for awhile, but I don't really see that happening. I would probably blab to my family about it. I would like to make sure that DD has informed her therapist, so everyone is ready to help her cope with my death. Hospice can help with care arrangements. I would not want to die at home; in a hospital or nursing home is fine with me. I don't want that place of refuge tainted for my family with the death of a loved one. I would prefer to have no one or only strangers around when I die. I don't think I really have a rational reason for that, but I don't want people being all weepy around me and trying to keep me here. In fact, if I am able to choose the time and manner of my death, I would choose an overdose in an anonymous hotel room, where only strangers will have to clean up after me. Everything I will need will be on the other side. Once I am gone, they may do with my remains what they will, but I hope not much money will be spent. Cremation is fine, and service is optional. Pauper's grave is fine; I don't care. I hope that my legacy will have more to do with living than dying.
ETA: I didn't address what I would do with the time, but I would want to spend it with my family, helping and taking care of them as much as possible. I don't see any changes in my dat-to-day routime, except what may be necessary as my condition deterioraes. I don't see a reason to do things any differently.
ToomuchStuff
4-20-13, 1:35pm
You might want to rethink your terms. You all are already terminal, as life is just a terminal std. I thought this was about cancer in general, not being terminal, which we ALL are.
You might want to rethink your terms. You all are already terminal, as life is just a terminal std. I thought this was about cancer in general, not being terminal, which we ALL are.While that's true I think, as other's have pointed out above, knowing that you have ONLY 6 months or a year left may mean doing things differently then if you thought you may have many many more years. While ideally we'd all love to be able to "live like it's our last day on earth" and toss aside all those things like jobs or family obligations to do whatever we want everyday, the reality is that most can't live like that. If I'm possibly going to be around 50 more years, then I need to do certain things (like have a job) so that I can feed, house and clothes myself both now and in the future. So while life is terminal, the end date may be tomorrow or decades and decades away. While the terminal illness end date may be within months.
ToomuchStuff
4-20-13, 2:13pm
I agree a time frame can change priorities, My talk of language is more meant as a shocking realization, that we do, just that, have a FINITE amount of time, Using that term lightly, seems like turning ones back on reality and we have all seen those who need to be shocked into action.
A friend was given that news, some form of leukemia, and he searched and found a trial for that illness a couple of hours away, apparently at Johns Hopkins, and he went through it and it wasn't horrible, and he's well today, with the help of his brother's blood. I've heard that many trials are hoaxes, so I'd look for one at a reputable place. I would definitely tell people, this guy kept us informed every step of the way with an internet thing where we could also reply and see each other's replies. It was calming and pulled us together even though many of us hadn't known each other before. He also ended each entry with a bunch of good jokes that he found in different places. Otherwise, if all that was too ambitious, meaning financially, I would want to get rid of all my stuff so no one else would have to.
I agree a time frame can change priorities, My talk of language is more meant as a shocking realization, that we do, just that, have a FINITE amount of time, Using that term lightly, seems like turning ones back on reality and we have all seen those who need to be shocked into action.
This realization is why I retired so early - at 42. Time - and the freedom to do whatever I wanted everyday - is SOO much more valuable then money. Can't make more of it. Can't get it back once it's gone.
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