One thing that unites humanity is that we were once all were born, and one day we will all die. It might happen thirty years from now, it might happen tomorrow, but it will happen.
In an almost surreal fashion, these ten terminally ill people shared their experiences with life, death, and dying. In their own words, they described their last days. Some of them are still with us, some of them have since passed away. Their stories vary, but they are all tremendously moving and demonstrate stunning bravery in face of the end.
I was told i was going to die in 2012, but i was diagnosed in 2008 so I wasn’t that surprised.
My days are a mixed bag. Some days i don’t want to get out of bed, and when i do i can’t seem to find the energy to leave the house. Those days are pretty rare though. I try and get out and walk every day. I have tumors all over my spine so when things go really bad for me, my legs will probably be first to go. I catch up with friends regularly and i find the time to visit them.
More importantly, I try and remind myself that there is nothing that i should be doing. When i was told that i was dying and that it could be in only a few months, my family took me on a holiday. My parents had me move home with them (that didn’t last), i did a big road trip. Then the sentimental. There were portraits with every family member. There were plans of my writing a book. I intended on writing a pamphlet for one of the cancer charities, because there is no pamphlet that says “so you’re going to die”. I was going to put together playlists and plan my will and write letters to everybody that i’ve ever known. I was going to burn everything of mine that i don’t want found by somebody after my passing and return everything that I’ve ever borrowed. Give away everything in person that I would prefer not be allocated away by a lawyer and a will. I still need to catch up with uncle Ron and i want to see the desert one more time and….
But i don’t need to do that. I don’t need to. This is my time, and it took me a lot of dying before i could take a deep breath and let go of the stress of living. Sometimes the best thing for me to do is crack a beer and watch some TV and not feel guilty about it. It’s easy to feel like you absolutely need to make each day count, but if i’m happy, i’m happy.
53 year old woman, ALS. Rapidly progressing. Everyday I get worse, couldn’t get my shirt on today. I tend to get up (which is a struggle) get dressed and then sit at my computer here for an hour or so in the morning. Hang out on my couch and read and watch tv. And if the weather is nice, roll out onto my porch to read in the sunshine.
Not really enough strength and energy to eat, though I am being yelled at for losing weight. No pain, for which I am thankful, but unable to do most things we take for granted. I have T-Rex arms now, probably won’t be able to walk or stand in the next few weeks. I am working hard to get the prescription for Death with dignity—this is not how I want to live, have had time to get my affairs in order which is good, but this sucks. I got the neuro the other day to say I have less than 6 months,I think I’ll be luck to make it to Christmas, more like early November at this rate. I don’t want to live like this anymore.
Polycystic liver and polycystic kidney disease, untreatable anemia. Organs look like they have chicken pox, so many cysts they won’t count them. Most are less than a cm, except for the two in the liver that are about 3cm across and growing. My kidney numbers suck for someone my age (42). 65% kidney function this year. Next year, it’ll be less. Saving up for a transplant I’m statistically unlikely to get, and won’t hope for one because someone else would have to die so that I could live.
What’s my day like? 100% normal, unless it isn’t. If I’m not sick, it’s like any other day. I’m taking off the excess weight. Very limited alcohol, no pain relievers unless I just can’t take it anymore. I’ve got a husband and kids who have their own lives and I can’t have them wasting my time feeling sorry for me. All I can do is raise them up to be independent with strong family bonds.
I don’t expect to see 60. Hell, 50’s starting to look suspect. But every day is a gift. Some days, that’s all I’ve got, but it’s something.
Inoperable-brain-aneurysm-guy checking in.
I don’t make long term goals or set too high of expectations for myself. I’ve found work that allows me to help people who really need it. I read a lot, and I think a lot, and I try to have fun hobbies.
I’ve made it a habit to not dwell on what can’t be fixed. I just do what I do; I know how fruitless it is to fight an enemy that refuses the very concept of the struggle.
I am 30. I have stage IV rectal cancer. It has a 5 year survivabilty rate of 6% and no statistic for 10 year survival. I was diagnosed almost three years ago now.
To answer your question, it really depends.
Last year at this time, I was on chemo drug called Irontican, at a very high dosage. My doctors were telling me that I would live as long as the drug kept working and I could tolerate it. Then I would go off, and have a few months (less than 3) and my organs would start shutting down and I would die a protracted and painful death.
My cycle was 2 weeks of chemo, one week break. At the beginning, I was sick for a day or two (nausea, not eating, sleeping 15-20 hours a day. Winded walking across my apartment) then back on my feet except for rampant diarrhea, total lack of continence and 10-20 bathroom trips a day. By October of last year, I had done 18 consecutive rounds of chemo. My really awful days had extended from 1 or 2 days after chemo to 5 or 6. I was only not sick on my one week breaks in my cycle. So for clarity, that was two full weeks of debilitating sickness and pain, then one week at kinda sorta sick. Then start back again.
When I first was told that my metastatic disease had spread to five tumors in my lungs and one in my kidney, my doctors were grave. But I was determined to keep going on. My daughter had just turned 3, and I desperately wanted to live long enough for her to remember me. That was in February. By October, I didn’t care. It was better for her not to remember me than to remember me as the woman who never got out of bed, shat herself constantly, and otherwise couldn’t function.
So I told my doctor I wanted to switch to palliative care and discontinue all chemo. She had been fighting me about backing down my treatments for months. But I broke down in her office. She got me to agree to meet a Colo-Rectal cancer oncologist.
And it changed my life. It wasn’t easy. I’ve been through three surgeries since then. I almost died from a post-operative infection. But now my disease is under control and I live a mostly normal life.
My death used to be my waking obsession. I fantasized about dying. I spent my good days writing memoirs and creating books for my kids. It crosses my mind often now, but I have received a chance to really live again, and I’m not wasting that time worrying about death. It’s coming for me, and it’s coming sooner than it is for my peers. I won’t see my kids graduate high school, or get married. I probably won’t be around for their first dates, or first crushes. But for me it’s enough that I got to kiss my son on his first day of school. That I have got to sit down and teach my daughter her letters. That I have done trips, wrote letters, and created memory after memory.
It’s weird, living on borrowed time. It’s weird because it’s pretty normal. I get exasperated with my kids attitudes and I scold them. I worry about car payments and my weight. All against the incredible backdrop of what a privilege it is to do all this. Because I wasn’t just sick, I was dying. This time last year, my life was already gone. And somehow, amazingly, I have it back.
I’m 30. Non-hodgkin lymphoma. I’ve been saying I have about a month left, for like the last 4 months. I am progressively getting worse though, and now I truly think it’s about a month. The main thing for me is not planning anything more than 4-5 days in advance. I may end up in hospital by then (a regular occurence) or I may be dead by then! There’s a lot of living in the moment, and being selfish, which nobody holds against you. I’m constantly torn between purging all my belongings to make the process easier on my parents, or just leaving things the way they are.
Also, I go back and forth between almost making ridiculous purchases (sports car), and giving all my savings to my sister/using it to pay for my funeral. I’ve come to terms with dying. I’ve mentioned this on r/cancer. The main thing for me is being comfortable. I don’t want pain. Which is tough, because i’m in pain 24/7 haha. It’s just crazy how in a year I’ve transformed from a muscular, handsome, wonderful, caring, thoughtful person if i may toot my own horn, to a fucking burden that people just worry about and don’t know what to say around.
My life expectancy for my disease is 40. I’m 25. So I don’t really dwell on it too much yet but I do make sure to take new opportunities as much as possible so I can experience different things before it’s too late.
Liver cancer here, result of extreme iron-overload undetected for far too long. Metastatic now. Bad. There is nothing that can be done.
So, really any day now. But here is the thing, we are all dying. Ever second that goes by is one second closer to it. So today, tomorrow, next week, next year….all of those moments are way more valuable than you realize. You don’t understand how short life is until you can see the end. I’m 42. I won’t live to see my daughter graduate from high school. I won’t see go to prom, go to college, get married, have kids, all of that. I won’t be here to comfort her when she gets her heartbroken. I won’t be here to support her, take care of her, watch out for her. My wife is a wreck. Somedays it’s like I’m already dead, and she’s just lost in grief. There are no words to make her feel better. I cannot tell her everything is going to be okay because I am going to die. She knows it, I know it, there is no easy way to accept that.
Day to day? Make the best out of it. I’m not blowing money left and right because I want to leave it behind for my girls. Quit smoking. Ironic. Spend a lot of time getting my shit together for when I am gone. Who I want to have what. Insurance, bills, finances sorted out and set up to make it as easy as possible for my wife at the transition. Have written some letters for my daughter to get when she is older. Have put together a lot of home videos from when she was little, stuff she won’t remember and I won’t be around to tell her about… early birthdays, time we spent together, I want her to have those memories. Made two videos, one for my wife and one for my girl. I want them to be able to see me happy, not hurting, see my face, hear my voice. Got my shit together as far as last wishes, when I want them to pull the plug and let me go, how I don’t want a funeral. I’ve set aside money for them to throw a party as a memorial. Drink and eat and share good memories.
Other than that I go to work when I can, work from home when I can’t. Spend as much time with my girls, my parents, my sisters family, my dogs as humanly possible. Eat good steak, drink good alcohol, enjoying every sunrise, sunset, and moment in between. We all have to make the best of what we’ve got while we’ve got it. There is no better time than today, because tomorrow isn’t promised to any of us.
I have kidney failure and am being kept alive with dialysis for now. A transplant will improve things but I’ll still probably have a shorter life span than most.
I still work full time and do fun stuff when I can. I’m taking a day trip with my husband today. I took tomorrow off too so I can rest.
Mostly that’s what’s different – I have to be at home at night for 12 hours for dialysis and I get tired easily so I don’t get out much on the weekdays either.
I was very upset about everything for about 2 years after diagnosis and I’m still hating it most of the time but I try to appreciate the good things that I would miss if I weren’t here.
Edit: wow, I had no idea of the response this would provoke. Thanks for the gold and the offers of body parts. That’s amazing.
I’m O negative but you don’t have to be an exact match if they can do this thing called paired donation. I’m in Iowa – the surgery and workup physical for potential donors will be done at UIHC.
If that still works for people who have offered, please message me for more info. If it doesn’t, I’m ok with that too.
And hubby and I had a great day in Wisconsin today although I was so busy rocking out to 80s power ballads that I created a ‘unique design element’ in my knitting. But it’ll work out ok.
I am 40, have stage 4 breast cancer and I have been told I will die. My initial diagnosis was stage 4, metastasised to my spine and liver. The thing is I am currently stable and feel perfectly fine. I may die in 6 months or in a decade, but apart from the cancer thing, I am otherwise healthy.
For the first 18 months it was all I could think about, it influenced everything around me, I did the big expensive trip, connected with old friends, etc. But after I did all that nothing changed. I still go to work every day, I go to the gym, I visit friends, I have the occasional beer, I am renovating a house, and being single I am out and about dating. Because I feel fine I manage to forget most of the time. I am constantly asked why I still work. Well I have to eat and put a roof over my head, plus what else am I going to do? I can’t be on holidays for what could be the next 10 years. My treatment is different to what most people understand with cancer. With early cancers they go in guns blazing, chop bits out and pump you full of nasty chemos to try and beat it.
With advanced cancer they are just trying to keep you stable and buy time. There is no cure, you won’t get better, so easy goes it until it doesn’t work any more. Because of the less aggressive medications my hair didn’t fall out, I haven’t lost weight, my colour is normal and I don’t spend hours puking. Like I said, I am fine. But then the chemo (pills) is still pretty yucky, I get regular blood tests, 3 monthly CT scans, 6 monthly bone scans, and have a 6 weekly check up with my Oncologist.
I’m pretty resilient, but when they scanned my brain ‘just to check’ it was pretty shitty (it was clear btw). Any one of those visits could be the one when I find out the medication is no longer working, the spots on my liver are out of control, there are no other options, and that’s it game over. It is like living under the sword of Damocles. But I’ve just gotta get on with it.