1. I’m terminal as fuck. I’ve got tumors in my heart, liver, lymph nodes, pancreas, abdomen, shoulder and neck.
Currently I’ve done a little over 7,000 hours of chemo along with 3 months of radiation and 8 surgeries so far.
Originally I was told that I’d have about 12-24 months to live.
If I make it to January 16th, I’ll have made it 7 years.
I’m just about to start the last approved treatment for my cancer (Colo-rectal). Currently I’m in pain, scared, and have just lost another friend of mine to this horrible fucking disease.
In addition to everything above though, I have run marathons on chemo, I’ve put together cancerous teams of people (Team Tumor) to compete in Triatholons, I’ve dressed up for treatment as a host of different things: everything from a turkey on thanksgiving, to Chemo cupid on valentines day, to a bunny (playboy kind) on easter.
As far as living out my final days, I’m doing some public speaking about the cancer, I’m selling “fuck cancer” shirts online. I’m writing poetry and essays. I’m doing silly shit and ending up on the news a lot. I’m spending a lot of time in chemo. I’m trying to do kind things for other patients and making too many friends who die too damn soon…
I’m also spending as much time as I can with my two young children, who understand waaay too much about death and cancer for their ages.
It has been a strange trip, being terminal, and it sucks that I’m coming to the end of the journey soon. I’ve had amazing times with it – I’ve gotten to speak to crowds of 35,000 people, and been cheered by the Beach Boys as I left the stage. – I’ve gotten to hit on a presidential candidate, -I’ve brought University cheerleaders and two houses of firemen over to chemo to pass out candy on valentines day. – I’ve brought a stripper into chemo – I’ve convinced a friend to dress as the grim reaper and come chase me around while im getting chemo.
Basically, I’ve lived while I’ve been dying.
I don’t regret a damn minute of life…except maybe the one where one cell in specific started splitting, again and again and again…
2. I’ve got Cystic Fibrosis. Growing up my sister who also had CF was always very sick. She was 5 years older than me and lost her battle at the age of 15. It really sucked because all I could think about was, “Well, only 5 more years.” I was pretty depressed for a while but then one day it came to me. I am going to live just as long whether I am happy or sad. My sister passing away really changed my outlook on life. Death is going to happen and you can’t do anything about it. Don’t stress about the things you can’t change, live in the moment and have the time of your life. Right before I die, I want to think “Damn, that was fucking awesome.”
3. I will die a slow, painful death.
I have CML, will progress to AML eventually, and then to death unless some miracle drug comes out in the next few years.
With the medication I take, the results are still relatively young – Gleevec has only been around for a short time, so it’s still hit or miss on how people will take to the medication, how long it will take them to build a resistance to the medication, etc.
I should have been dead a few years ago, CML progressing to AML usually only takes a year or two give or take, and then it’s a quick road down the painful death at the end.
I live my life rather slovenly, I quit working a few months ago as I kept getting sick, kept getting shit from work from being sick all the time, was tired of having to explain to people how somebody with cancer could appear to be so healthy i.e. not skinny frail and miserable all the time.
So now I spend my time at home, playing housemaid while my wife works. I read a lot, I play video games, I browse the internet for long periods of time, honestly pretty boring, but I’m just killing time as there really isn’t much else I could be doing.
4. I have cystic fibrosis. I’m trying to achieve so many things normal people have, but are harder because of my CF. I want a boyfriend, and to eventually get married before I’m too ill. I just got my first post graduate school job, after moving across the world. I’m very, very afraid of the future, but I have some truly wonderful friends I can vent to, and my parents are very supportive. There’s a lot of fear in my life- I’ve never pretended to be one of those patients who sets out to be a role model and an inspiration. I have break downs a lot. I struggle mentally and physically every day, and I may move back home soon, as my lung function has declined a lot in the past few months, but at least home has video games.
5. I have stage 4 colon cancer. Had a major surgery which lasted 8 hours followed by a 1.5 month hospital recovery. Currently I’m on my second regimen of chemotherapy (started back in July and I go in every other week) with no stop date. It is pretty much stay on chemo until the cancer stops responding to the treatment.
I stopped working after my diagnosis (I have a Ph.D. In Forensic Psychology) and have been spending time with family and my dog. I also enjoy playing video games online as it lets me interact with many friends I’ve met over the years (I still raid in World of Warcraft in a guild I helped run and have been in since 2004).
My biggest worry is my family and dog when I’m gone. I want to make sure they are okay.
6. Duchenne muscular dystrophy, I have maybe 5 years my heart function is down to 28%, I am bed ridden so I cant leave the house but my last day I want carried outside to lay on the grass and watch the sunset.
7. Stage IV colon cancer here. Age 35. I’m a single mum to a 1-year-old and there is a 94% chance I’ll be dead in 4 years. But there is still a wee bit of hope, so I try to hold onto that (hard to do most days). My days are filled with spending time with my baby and hoping that I live long enough that she’ll remember me. She’s pretty awesome and makes me laugh every day, so there is a lot of happiness in this life of mine.
8. I have a progressive neurological disease. The grey matter of my brain is slowly wasting away and after that the white matter will start wasting away. I am 21 and this is typical in… old people, haha. \
It causes me to have very very very early stages of dementia as well, go figure.
It will take maybe 10-15 years until I get to a very bad point though… You know, the point of no return. (I’ll be in my 30’s) Sorry, I use humor to cope.
I’m scared. I try not to think about it though. I just want to do something with my life before all of this.
I worked in EMS since 17 years old and I no longer can. I want to start some sort of scholarship fund or some sort of fundraiser for EMT’s who have been dealt a bad hand and are unable to continue EMS because of their neuro degenerative disease. This is going to be the final big thing I want to do and I hope it will continue years after I’m gone.
9. I have Motor Neurone Disease. Somewhere between 6 months and three years to live. More likely to be a year or so, since I was diagnosed late.
After the cold-shower-shock, there was no other option than to swallow it, accept the new state of my world, and look at what was left to me.
To my surprise, I found that there was nothing big/spectacular that I wanted to do. The bucket list had nothing on it.
Instead, I found that what I wanted was to spend what time was left living my life, as much as possible, normally. Seeing friends. Talking and laughing. Seeing the sunshine (or the rain) on the trees. I have tried to let those close to me know this, and understand it. I do not want to spend the rest of my days talking about my illness, in an atmosphere of gloom.
In many ways, it is easier for me than for them. I can laugh and be happy, and people think it’s marvellous. But for them, there’s the fear that they might appear callous or shallow – to be easy and cheerful when I’m dying.
Sadness? Not for myself. I might reasonably have expected a couple more decades of life, but I’m not young. I’ve managed to have a fairly full life, usually aiming at happiness rather than achievement – though I have achieved several of the things that were important to me: I have children, I have published a couple of books, I have made things I’m proud of. And I have friends that I love, that I value for the things they do and for who they are. I feel very lucky, and my diagnosis and the short life ahead of me do not alter this.
I have, to an extent, managed the news of my illness, telling those close to me, but asking them to be discreet. I have a wide circle of friends, for one reason and another, and I don’t want acquaintances asking me about my health in the local supermarket. I am trying (it’s difficult) to be quite ruthless about diverting talk away from me. It’s difficult because I know that they genuinely care – but I want to enjoy this small bit of life left to me. And that will not be helped by endlessly discussing my symptoms.
One further thing is that I am poised to quickly slip away if anyone starts lecturing me about ‘alternative therapies’ for MND, or talking about the effects of a positive mindset, or the power of faith or. . . any of the myriad of solutions that sound good and positive but actually are based more on ‘wouldn’t it be nice if’. . . rather than any genuine evidence.
I’m becoming less and less physically capable, but I’m determined to keep doing what I can do for as long as I can. Which means that sometimes I have to fend off over-helpful friends. It’s lovely to have things done for me, but I don’t want to get used to having things done for me. Until I genuinely can’t do them any more.
Most people here have it much worse than I. At least I don’t have one of those dreadfully painful diseases that tears the body apart. Nor does MND affect the brain. Stephen Hawking has a version of this disease, and his mind appears to be as sharp as ever.
I have no fear of stopping, as we all have to do that. Except now and then I realise that I’m effectively standing on the edge of a cliff – (what people call death) and I get a sudden fright.
And that’s more than enough. I haven’t had a chance to express these things at such length. Thanks for asking the question.