20 ms·

I’ve been battling cancer last 2 years, but now only have a few days left

380 points by donsupreme 4y ago

tomrod 4y ago
Fuck cancer. Be at peace, Mark.[0] [0] https://www.neuroscience.ox.ac.uk/research-directory/mark-stokes https://www.neuroscience.ox.ac.uk/research-directory/mark-st...
- tomrod 4y ago
  10 Simple Rules for a Supportive Lab Environment: https://direct.mit.edu/jocn/article/35/1/44/113591/10-Simple-Rules-for-a-Supportive-Lab-Environment https://direct.mit.edu/jocn/article/35/1/44/113591/10-Simple... > These rules were written and voted on collaboratively, by the students and mentees of Professor Mark Stokes, who inspired this piece.
  - tomrod 4y ago
    These are rules that are good for any team, not just for academic labs. 1. Encourage Critique But Not Competition 2. Model “Failure” and Celebrate Honesty 3. Be Approachable 4. Facilitate Communication and Ensure There Are Minimal Barriers to Asking Questions 5. A Supportive Lab Is a Social Lab 6. Give Timely (and Constructive) Feedback 7. Respect Others' Time and Expertise 8. Have Career Conversations That Cover Both Academic and Nonacademic Paths, Prioritizing Individuals' Career Goals and Aspirations 9. Keep Track of, Suggest, and Create (Tailored) Opportunities for Trainees 10. Be An Advocate
    - fuzzfactor 4y ago
      This will live on forever. I'll be doing my part.
    - bane 4y ago
      There's a lot of wonderful empathy encoded here.
endorphine 4y ago
Anyone else feeling anxious over their own mortality after reading this?
- weberer 4y ago
  Not really. It was inevitable before, and its still inevitable now.
  - brookst 4y ago
    Yep. All that changes is information about the shape of the probability curve for how many days are left.
- sh4rks 4y ago
  That's why you meditate on your death everyday
  - leetrout 4y ago
    Bingo. Memento mori. https://dailystoic.com/memento-mori/ https://dailystoic.com/memento-mori/ And other "bad things" with negative visualization. https://en.wikipedia.org/wiki/Negative_visualization https://en.wikipedia.org/wiki/Negative_visualization
    - CRWW 4y ago
      I've been looking for a meaningful challenge-coin like something to keep on my person, and coincidentally been wanting to look into stoicism more. Thanks for the link.
  - depr 4y ago
    Indeed. It's already beneficial to think about your own death for just 10 to 20 minutes a couple of times. Or imagine that you have only one year to live.
- drowsspa 4y ago
  I actually envy people who have such a drive to live to the point of battling cancer for so long. If I got diagnosed I definitely would just give up.
kahon65 4y ago
I feel very sad and Bad. I Hope there will me a miracle for this man. If he reads my comment, i want him to know i give him a lot of love, to this dad of children and to his children and all of his family, and that I want to cry. Hope a miracle will be, really. From a French young computer scientist.
- bckr 4y ago
  It's natural to feel this way. Also consider that all creatures before us went away in this way as well, and all will. Even if we attain superhuman lifespans, one day something will put an end to our lives. Finally, consider being curious about death itself. There are many strange and interesting features of the death of a sapient being.
  - beebeepka 4y ago
    I am curious about your last paragraph. What does it mean?
    - bckr 4y ago
      Death is something people in my culture try not to think about much. It is considered that the dead are totally dead and gone, never to be spoken to again and spoken of with sadness and distance. People of other cultures think differently about death. Death is welcomed into the day to day life. Consciousness of death is invited, even celebrated. The dead are spoken to. This second group of people don't believe in the finality of death. They believe and live towards life after death, believing in either some sort of continuum of consciousness or of their own consciousness as the process of an immaterial soul that will live after the body stops. Stories of death and near-death are full of the unexplained and perhaps unexplainable. From a western materialist perspective alone, death is fascinating if you look at it. Where does our consciousness arise from? It must be from the brain, right? And it is a sort of illusion, since we don't have individual souls. The perception of consciousness is a labyrinth of mirrors, self references. Yet, the same machinery for perceiving ourselves is also used to perceive others. We are constantly simulating and imitating one another. We're even working to modify and live up to others' images of us. So the patterns of the consciousness of any individual are actually distributed, holographically, through a community of brains. This being known.... Who or what died when one brain dropped off the grid? (For more in this direction, read Hofstadter). Even more simply, what changes take place in a dying person? What is the difference between a person who embraces death and a person who dies in fear? Is it possible to be happy while dying? What would it take to live a life that ends happily? This is what I mean when I say that death is worth being curious about.
greenthrow 4y ago
I recently had a cancer scare (turned out to be benign) and have a friend currently battling. I don't know Mark but I know cancer sucks.
- deleted 4y ago
  [deleted]
nick__m 4y ago
My wife has one metastasis on her spine , it was detected 33 day ago, I fear that moment where she will be suffering enough that she will qualify for medically assisted death. According to the paper accompanying her incredibly expensive drugs (5700$/month) she has between twelve and eighty-eight months left ... I hope that she will cost money to my insurance for a long time! According to her oncologist we cannot know as the stats are always made in the past and they don't reflect recent medical advances like the to be scheduled next week xray scalpel surgery. fuck cancer.
- tomrod 4y ago
  Fuck cancer. All the best to you and your wife.
  - melling 4y ago
    I really wish people would stop saying “F cancer” As a society, we have the option of greatly reducing cancer deaths whenever we so choose. Let’s do that rather than raging against something that feels nothing. It has been over 15 years since the Last Lecture and we still have done little for pancreatic cancer, for example. https://youtu.be/ji5_MqicxSo https://youtu.be/ji5_MqicxSo According to Craig Venter, early detection is what we need to eliminate cancer: https://youtu.be/iUqgTYbkHP8?t=15m37s https://youtu.be/iUqgTYbkHP8?t=15m37s No one is saying it’s going to be easy but we’re going to make a lot of progress over the next 25 years. Let’s decide to do more sooner.
    - bulbosaur123 4y ago
      Referring to early screening, this seems like the right way to go: https://grail.com/ https://grail.com/
      - jghn 4y ago
        Sort of. The issue with current early detection methods is that they tend to cause more harm than good at population scale. Between getting dosed with radiation in the process, false positives causing at best psychological trauma if not unnecessary treatment, and it's hard to tell if you just detected a cancer you'll die with instead of dying of - and thus another form of unnecessary treatment. The blood tests remove some, but not all of that. Yes, for any arbitrary person it might be lifesaving, just like current methods. But at population scale it's not a panacea.
jacquesm 4y ago
For some background on who this is: https://www.neuroscience.ox.ac.uk/research-directory/mark-stokes https://www.neuroscience.ox.ac.uk/research-directory/mark-st...
deleted 4y ago
[deleted]
rektide 4y ago
- jacquesm 4y ago
  Yahoo! did the same with Geocities when they couldn't make a buck on it. Still mad about that one.
- pyuser583 4y ago
  I have a relative who joined Facebook in the early days, and then passed away shortly after. Her account is still up, and FB talks about her like she’s alive. There’s no way for me to inform FB that the inevitable has become actual. FB has a “memorial archive” feature, but distant relatives have to way of initiating it. The people closest to her don’t have a Facebook recognized connection. She’s been gone over a decade.
  - trhr 4y ago
    Pretty sure all you need is a death certificate, which should be on file at her local courthouse.
    - tintor 4y ago
      And to prove that person on the certificate is the owner of FB account.
    - pyuser583 4y ago
      I’m thousands of miles away from her local courthouse.
      - trhr 4y ago
        You should be able to send the clerk a self-addressed-stamped-envelope and a check for whatever the records retrieval fee is (available on their website). Pulling legal records from thousands of miles away isn't exactly rare. You don't think lawyers fly all over the country all the time, do you?
bigwavedave 4y ago
Once upon a time, I was diagnosed with a brain tumor that would kill me within a year. Eight years later and it hasn't yet. I'm sorry you had this happen- I hope your pain is gone soon, brother. Fuck cancer.
- jacquesm 4y ago
  You are so lucky. I know quite a few cases where it was the opposite. "Oh, you've got years left". And then a funeral three months or so later. Cancer really sucks.
  - ReptileMan 4y ago
    There are two types of cancer. One that you will die with, the other you will die from. Unfortunately you never know which is which until it is too late. I hope that some immune treatments will be approved soon. Seem to be promising
    - bigwavedave 4y ago
      > There are two types of cancer. One that you will die with, the other you will die from. Unfortunately you never know which is which until it is too late. Spot on.
    - JoeAltmaier 4y ago
      Yes! New treatments at the UofIowa are sending patients home cured. Not in remission. Only very specific cancers, and at great cost. But there may be light at the end of the tunnel.
      - jacquesm 4y ago
        That is incredibly good news, let's hope they manage to expand this kind of treatment.
      - adamredwoods 4y ago
        There currently is no "cure" for cancer. Patients can get to the NED (no evidence of disease) stage, but cancer comes back unless resected early enough. This may be referring to immunology, which is promising, but only keeps it at bay and needs continuing therapy. It becomes a chronic disease, which is preferable to a uncontrollable disease.
tobr 4y ago
Just today I learned that Nick Berry of https://datagenetics.com/ https://datagenetics.com/ passed away recently. I guess that is slightly off topic but I wanted to share, I’ve been following his excellent blog for many years.
dusing 4y ago
Really puts “I’m leaving twitter” and 7 day suspensions into perspective.
bulbosaur123 4y ago
Really hope these breakthrough AI discoveries will dramatically accelerate cure for cancer (all types).
- orangepurple 4y ago
  They will accelerate cheap screening before treatments
  - bulbosaur123 4y ago
    Early screening is usually the key. Cancers caught early can be easily treated.
bane 4y ago
Almost exactly 18 months ago, my then 87 year old father, after feeling unwell and having some fluid problems with his lungs was diagnosed with stage-4 lung cancer. He turned down treatment and died at home a couple days before Christmas last year. I've come away from the experience very unhappy with the medical system. There's a long list, things that in any other industry would be prosecuted. The medical and hospice systems are as near to worthless as any amount of money can buy -- at most times an absolute farce. These were people who went out of their way to make things a little less worse, but they all worked on the periphery of the system: drivers, suppliers, and so on. Fuck cancer, but also fuck the American medical system, and anybody who's gotten in the way of making it more sane and compassionate. I miss my Dad.
- fdhfdjkfhdkj 4y ago
- burritas 4y ago
  I'd rather not go into personal detail but I share a similar experience. The thing that really drove it home for me was when I got back home and was telling my own doctor about my experience dealing with family in the medical system and she said I was mistaken or there was a misunderstanding because that kind of thing doesn't happen. I asked why she was siding with a doctor she'd never met before instead of listening to her patient, which got her pretty flustered. I don't see her anymore.
  - jacquesm 4y ago
    The one thing that every doctor should have happen to them is to go through the medical system as well for something non-trivial. That usually gives them a lot more perspective on the reality of being on the receiving side.
    - toomuchtodo 4y ago
      Some doctors have a more healthy relationship with death than others. https://www.huffpost.com/entry/doctors-death_b_1500871 https://www.huffpost.com/entry/doctors-death_b_1500871 https://www.theguardian.com/society/2012/feb/08/how-doctors-choose-die https://www.theguardian.com/society/2012/feb/08/how-doctors-...
INTPenis 4y ago
Cancer is just so unfair.
terran57 4y ago
Two very personal experiences to relate. --- My father died 7 weeks after he was diagnosed with liver cancer - 11 days past his 62nd birthday. Prior to the diagnosis, he was going to take early retirement at 62 and travel with my mother. He had lots of other plans for post-retirement that he never got to realize. --- A close friend of mine died of heart cancer (well, technically, he died from complications of having an artificial heart - but cancer ruined his natural heart). He had thought he'd beaten cancer before (in the leg) and after repeated clean-bills of health, he finally thought it was safe to marry his fiancé and have a couple of children. But instead, cancer re-emerged and claimed his life. He left behind his fiancé', grieving parents, sisters and left a large hole in the community. So yeah - fuck cancer.
- ethics13 4y ago
  Did your dad drink? I ask because my dad died of the same (although they never did find the origin other than liver) and he was not a drinker.
  - mythhouse 4y ago
    I think > 30% of fatty liver disease comes from insulin resistance
    - ethics13 4y ago
      Yes, I've heard that as well but as I've said, the mystery is that he was 5"10' at 165lbs, he was fit. No diabetes or any health issues at all.
  - terran57 4y ago
    Yes, in his earlier life he did, but he had really cut down on drinking in the preceding few years. Reflecting back on that time, I would say he knew something was wrong but was in denial about it.
t-writescode 4y ago
My mom had a cough that wouldn't go away and covid 3 or 4 times during the last 2 years. Turns out those symptoms were hiding breast cancer, which metasticized in 2 years, the chemo symptoms because too bad and so she had to stop, and now she's gone. She was 59. When I went to her house to tend to her dogs, she had been looking at retirement and hospice care for her "live out my last days" cancer life basically next door to me (she lives in a different state). Fuck cancer.
- jcims 4y ago
  The cough that wouldn’t go away was a bellwether to my wife’s ovarian cancer. She was incredibly stubborn when it came to medical issues and had been experiencing some pain in her side that I had been stressing for her to get seen for. She went to urgent care and they did nothing, bolstering her opinion that it was worthless being seen for it. The cough was a dry cough that was not very frequent but the older women in her periphery were very concerned about it. I didn’t think much of it, just a dry cough. The women in the other hand would say things like ‘I really don’t like that cough’ with a concerned face. I don’t know if they had an internalized correlation or it was just a sense of something wrong. It turns out that this is a fairly common symptom.
- bane 4y ago
  Argh, too young! I'm so sorry to hear about this. Covid has really messed up the system badly. The medical treatment funnel gets very myopic treating the most present thing first, and often misses other problems going on at the same time. With my Dad we think the doctors were very focused on some other health issues that were complications from a knee replacement he had done about 5 years before. The "you can only come in for a visit for one problem at a time" broken insurance system would have had him coming in all day, every day for visits, so he just went for what bothered him the most. Turns out his lung cancer wasn't his worst problem until it was.
brendabug 4y ago
I pray for you and your family and that the diagnosis is not true. Praying your work continues and that there will be breakthroughs from your work. Pray your passage brings you into the arms of long lost loved ones to comfort you.
brendabug 4y ago
Pray this diagnosis is not true and by some miracle you can be here longer. Pray your work leads to breakthroughs so your name is never forgotten. I pray if your passage is inevitable that your long lost loved ones will help you with safe and comforting passage, like I prayed someone was with my child.
justrudd 4y ago
This year, during a routine physical, my general practitioner felt some “lumps” in my throat. He wasn’t worried but wanted me to get a second opinion on them. two rounds of chemo and two five week five day a week rounds of radiation later, I no longer have the tumors in my throat. I was lucky. They got detected early and hadn’t metastasized. But holy hell was radiation treatment terrible. When I had my first round of chemo to ready me for my first round of radiation, it was easy to “ignore” the chemo. I can’t find the comment now, but they basically state “You get up, you go in, you get sick, you go home, rinse and repeat”. It sucked, but I could muscle through it. The radiation treatments? Damn. By the time the burning sensation in my neck and face got to a point I could ignore it, it was time to go in for another session. By the 3rd session of the 3rd week, my oncologist prescribed me sleeping and high dosage pain pills. My pharmacist didn’t want to refill my pain meds the 3rd time. Thought I had a pill doc that was letting me abuse them. But all through the pain and the uncertainty, the thing that affected me the most was - I really learned who, in my social circle, I could count on. Made me realize that most of my social circle is acquaintances not friends. Not loved ones. So cancer really opened my eyes to human connection. Now I just gotta figure out how to do it :)
- donjigweed 4y ago
  five week, five days a week radiation? was this "proton" radiation treatment?
  - justrudd 4y ago
    No. The first treatment was electron since the tumors were in my throat and close to the surface. But my oncologist didn’t like the progress. So my second treatment was just standard photon. Both done with conformal.
- gregfjohnson 4y ago
  These days my job is writing treatment planning software for radiation treatment. Your post makes it more real from the patient’s perspective. The hope and goal is to move the probability needle of range of outcomes in a good direction. I hope your cancer treatment works out well for you.
michaelcao 4y ago
My father passed away 4 years ago because of lung cancer. Fu*k cancer. I wish you the longest possible time.
iamthepieman 4y ago
My youngest brother is 28, married with two kids and was diagnosed last Thursday with acute lymphoblastic leukemia. He was admitted to the hospital the next day as his platelet count was hovering between 20 and 30k. Low platelets is below 50k where they recommend you don't shave, use a nail clipper or knives, bend over or walk around barefoot. I know you need to be your own advocate in the healthcare system but he has no concept and I don't know enough to be able to know if he's getting the right care. In general I trust the healthcare system. But I want to know that the doctors considered x, y and z and didn't choose because of such and such reasons even if those reasons are "we don't have the facilities or experience for those treatments" But what we get are perfunctory stat reports and then sudden announcements that they are going to be doing something in the next 4 hours. The communication is worse than any software project I have ever been on. I need to invest time in learning about his illness without getting a doctorate but don't have any doctor friends to even point me in the right direction.
jrnichols 4y ago
This is something that I see rather often in my career and I wanted to pass along one very important thing that I've learned over the years - please be sure that you have a will or an advanced directive in place. PLEASE do this. Have that difficult conversation about what steps you want taken to save your life. Do you want chest compressions? Do you want a tube inserted in your airway to assist you in breathing? Do you want heroic measures to be taken even if they may not save your live? Do you want to be placed on a mechanical ventilator? The reality is that many people don't have these conversations and then something happens to them and there is legally no way to abide by their spoken wishes. Your wishes need to be written down. Contact an attorney. Put an advanced directive on file. Your local hospital may be able to help. In many states, there are "out of hospital DNR" forms that we MUST have in order to terminate resuscitation efforts should it come to that. In other words, if you collapse, someone calls 911, and there is no paperwork, we are legally required to start life saving resuscitation measures and continue them. without legal documentation, things get really sticky, and it gets even worse if family is involved. Like someone else noted, the "daughter from California syndrome" is very real. the difficult conversations about your end of life issues may be the most important ones you ever have.
- tekknik 4y ago
  When it’s my time to go, I want to go. All of this trauma caused to family members isn’t worth it. This seems like a desperate attempt to save something that will end regardless of your actions. Property goes to the immediate next of kin in the absence of a will. A will is almost next to useless.
  - jrnichols 4y ago
    > Property goes to the immediate next of kin in the absence of a will. Not accurate. It will often go into probate court or become property of the state. > A will is almost next to useless. False.
ghosthamlet 4y ago
Maybe you can try do more Exercise, Exercise is medicine for cancer and every dose counts - even in late stages of the disease: https://www.ecu.edu.au/newsroom/articles/research/exercise-is-medicine-for-cancer-and-every-dose-counts-even-in-late-stages-of-the-disease https://www.ecu.edu.au/newsroom/articles/research/exercise-i...
theandrewbailey 4y ago
My mom died of cancer almost 2 weeks ago.[0] For about 2 years, it was managed well, and she did all the stuff she used to. In August, things started going downhill. I'm getting something for Christmas that no one should want: an inheritance. I love you mom, and I miss you. Don't worry, my brother and I are picking up the pieces, one day at a time. [0] https://news.ycombinator.com/item?id=33969098 https://news.ycombinator.com/item?id=33969098
thrww20221219 4y ago
[dead]
2143 4y ago
(Pardon my insensitive language — this is my way of coping). A few years ago while casually wandering YouTube I stumbled across a video [1] of a young girl explaining that her cancer is at a point of no return. Her name is Sophia Gall and she's from Australia. Apparently, she had cancer previously and underwent treatment. Unfortunately the cancer recurred. In the video she's pretty much scared, crying and hopeless. She did mention she'll be traveling around. Eventually, there were videos of her from Paris and a few other places. She seemed pretty cheerful then. Months — maybe a year — later I remembered her and seeked her YouTube channel. From the comments on her latest video that was released several months before, I learnt that she passed away. In her last few videos, apart from the physical pain she was surprisingly composed. Like, she had accepted her fate. I don't know why I said all that here. That whole thing about Sophia had thoroughly moved me. [1] https://youtu.be/yWiIyvQaNiQ https://youtu.be/yWiIyvQaNiQ (While searching for her video, I discovered that there's a whole bunch of youtubers with cancer.)
- lcall 4y ago
  That kind of thing is indeed moving. I have learned for myself that life, existence, doesn't end at death. Our choices matter, and there is hope for good things to come, depending on our further choices. More at my web site (in profile, nothing for sale, tech-simple site). (ps: the good things to come can include family ties and significant learning & growth: better, I would say, than this life, again depending on our choices.)

380 points by donsupreme 4y ago

Fuck cancer. Be at peace, Mark.[0] [0] https://www.neuroscience.ox.ac.uk/research-directory/mark-stokes https://www.neuroscience.ox.ac.uk/research-directory/mark-st...

tomrod 4y ago
10 Simple Rules for a Supportive Lab Environment: https://direct.mit.edu/jocn/article/35/1/44/113591/10-Simple-Rules-for-a-Supportive-Lab-Environment https://direct.mit.edu/jocn/article/35/1/44/113591/10-Simple... > These rules were written and voted on collaboratively, by the students and mentees of Professor Mark Stokes, who inspired this piece.
- tomrod 4y ago
  These are rules that are good for any team, not just for academic labs. 1. Encourage Critique But Not Competition 2. Model “Failure” and Celebrate Honesty 3. Be Approachable 4. Facilitate Communication and Ensure There Are Minimal Barriers to Asking Questions 5. A Supportive Lab Is a Social Lab 6. Give Timely (and Constructive) Feedback 7. Respect Others' Time and Expertise 8. Have Career Conversations That Cover Both Academic and Nonacademic Paths, Prioritizing Individuals' Career Goals and Aspirations 9. Keep Track of, Suggest, and Create (Tailored) Opportunities for Trainees 10. Be An Advocate
  - fuzzfactor 4y ago
    This will live on forever. I'll be doing my part.
  - bane 4y ago
    There's a lot of wonderful empathy encoded here.

endorphine 4y ago

Anyone else feeling anxious over their own mortality after reading this?

weberer 4y ago
Not really. It was inevitable before, and its still inevitable now.
- brookst 4y ago
  Yep. All that changes is information about the shape of the probability curve for how many days are left.
sh4rks 4y ago
That's why you meditate on your death everyday
- leetrout 4y ago
  Bingo. Memento mori. https://dailystoic.com/memento-mori/ https://dailystoic.com/memento-mori/ And other "bad things" with negative visualization. https://en.wikipedia.org/wiki/Negative_visualization https://en.wikipedia.org/wiki/Negative_visualization
  - CRWW 4y ago
    I've been looking for a meaningful challenge-coin like something to keep on my person, and coincidentally been wanting to look into stoicism more. Thanks for the link.
- depr 4y ago
  Indeed. It's already beneficial to think about your own death for just 10 to 20 minutes a couple of times. Or imagine that you have only one year to live.
drowsspa 4y ago
I actually envy people who have such a drive to live to the point of battling cancer for so long. If I got diagnosed I definitely would just give up.

kahon65 4y ago

I feel very sad and Bad. I Hope there will me a miracle for this man. If he reads my comment, i want him to know i give him a lot of love, to this dad of children and to his children and all of his family, and that I want to cry. Hope a miracle will be, really. From a French young computer scientist.

bckr 4y ago
It's natural to feel this way. Also consider that all creatures before us went away in this way as well, and all will. Even if we attain superhuman lifespans, one day something will put an end to our lives. Finally, consider being curious about death itself. There are many strange and interesting features of the death of a sapient being.
- beebeepka 4y ago
  I am curious about your last paragraph. What does it mean?
  - bckr 4y ago
    Death is something people in my culture try not to think about much. It is considered that the dead are totally dead and gone, never to be spoken to again and spoken of with sadness and distance. People of other cultures think differently about death. Death is welcomed into the day to day life. Consciousness of death is invited, even celebrated. The dead are spoken to. This second group of people don't believe in the finality of death. They believe and live towards life after death, believing in either some sort of continuum of consciousness or of their own consciousness as the process of an immaterial soul that will live after the body stops. Stories of death and near-death are full of the unexplained and perhaps unexplainable. From a western materialist perspective alone, death is fascinating if you look at it. Where does our consciousness arise from? It must be from the brain, right? And it is a sort of illusion, since we don't have individual souls. The perception of consciousness is a labyrinth of mirrors, self references. Yet, the same machinery for perceiving ourselves is also used to perceive others. We are constantly simulating and imitating one another. We're even working to modify and live up to others' images of us. So the patterns of the consciousness of any individual are actually distributed, holographically, through a community of brains. This being known.... Who or what died when one brain dropped off the grid? (For more in this direction, read Hofstadter). Even more simply, what changes take place in a dying person? What is the difference between a person who embraces death and a person who dies in fear? Is it possible to be happy while dying? What would it take to live a life that ends happily? This is what I mean when I say that death is worth being curious about.

greenthrow 4y ago

I recently had a cancer scare (turned out to be benign) and have a friend currently battling. I don't know Mark but I know cancer sucks.

deleted 4y ago
[deleted]

nick__m 4y ago

My wife has one metastasis on her spine , it was detected 33 day ago, I fear that moment where she will be suffering enough that she will qualify for medically assisted death. According to the paper accompanying her incredibly expensive drugs (5700$/month) she has between twelve and eighty-eight months left ... I hope that she will cost money to my insurance for a long time! According to her oncologist we cannot know as the stats are always made in the past and they don't reflect recent medical advances like the to be scheduled next week xray scalpel surgery. fuck cancer.

tomrod 4y ago
Fuck cancer. All the best to you and your wife.
- melling 4y ago
  I really wish people would stop saying “F cancer” As a society, we have the option of greatly reducing cancer deaths whenever we so choose. Let’s do that rather than raging against something that feels nothing. It has been over 15 years since the Last Lecture and we still have done little for pancreatic cancer, for example. https://youtu.be/ji5_MqicxSo https://youtu.be/ji5_MqicxSo According to Craig Venter, early detection is what we need to eliminate cancer: https://youtu.be/iUqgTYbkHP8?t=15m37s https://youtu.be/iUqgTYbkHP8?t=15m37s No one is saying it’s going to be easy but we’re going to make a lot of progress over the next 25 years. Let’s decide to do more sooner.
  - bulbosaur123 4y ago
    Referring to early screening, this seems like the right way to go: https://grail.com/ https://grail.com/
    - jghn 4y ago
      Sort of. The issue with current early detection methods is that they tend to cause more harm than good at population scale. Between getting dosed with radiation in the process, false positives causing at best psychological trauma if not unnecessary treatment, and it's hard to tell if you just detected a cancer you'll die with instead of dying of - and thus another form of unnecessary treatment. The blood tests remove some, but not all of that. Yes, for any arbitrary person it might be lifesaving, just like current methods. But at population scale it's not a panacea.

jacquesm 4y ago

For some background on who this is: https://www.neuroscience.ox.ac.uk/research-directory/mark-stokes https://www.neuroscience.ox.ac.uk/research-directory/mark-st...

deleted 4y ago

[deleted]

rektide 4y ago

jacquesm 4y ago
Yahoo! did the same with Geocities when they couldn't make a buck on it. Still mad about that one.
pyuser583 4y ago
I have a relative who joined Facebook in the early days, and then passed away shortly after. Her account is still up, and FB talks about her like she’s alive. There’s no way for me to inform FB that the inevitable has become actual. FB has a “memorial archive” feature, but distant relatives have to way of initiating it. The people closest to her don’t have a Facebook recognized connection. She’s been gone over a decade.
- trhr 4y ago
  Pretty sure all you need is a death certificate, which should be on file at her local courthouse.
  - tintor 4y ago
    And to prove that person on the certificate is the owner of FB account.
  - pyuser583 4y ago
    I’m thousands of miles away from her local courthouse.
    - trhr 4y ago
      You should be able to send the clerk a self-addressed-stamped-envelope and a check for whatever the records retrieval fee is (available on their website). Pulling legal records from thousands of miles away isn't exactly rare. You don't think lawyers fly all over the country all the time, do you?

bigwavedave 4y ago

Once upon a time, I was diagnosed with a brain tumor that would kill me within a year. Eight years later and it hasn't yet. I'm sorry you had this happen- I hope your pain is gone soon, brother. Fuck cancer.

jacquesm 4y ago
You are so lucky. I know quite a few cases where it was the opposite. "Oh, you've got years left". And then a funeral three months or so later. Cancer really sucks.
- ReptileMan 4y ago
  There are two types of cancer. One that you will die with, the other you will die from. Unfortunately you never know which is which until it is too late. I hope that some immune treatments will be approved soon. Seem to be promising
  - bigwavedave 4y ago
    > There are two types of cancer. One that you will die with, the other you will die from. Unfortunately you never know which is which until it is too late. Spot on.
  - JoeAltmaier 4y ago
    Yes! New treatments at the UofIowa are sending patients home cured. Not in remission. Only very specific cancers, and at great cost. But there may be light at the end of the tunnel.
    - jacquesm 4y ago
      That is incredibly good news, let's hope they manage to expand this kind of treatment.
    - adamredwoods 4y ago
      There currently is no "cure" for cancer. Patients can get to the NED (no evidence of disease) stage, but cancer comes back unless resected early enough. This may be referring to immunology, which is promising, but only keeps it at bay and needs continuing therapy. It becomes a chronic disease, which is preferable to a uncontrollable disease.

tobr 4y ago

Just today I learned that Nick Berry of https://datagenetics.com/ https://datagenetics.com/ passed away recently. I guess that is slightly off topic but I wanted to share, I’ve been following his excellent blog for many years.

dusing 4y ago

Really puts “I’m leaving twitter” and 7 day suspensions into perspective.

bulbosaur123 4y ago

Really hope these breakthrough AI discoveries will dramatically accelerate cure for cancer (all types).

orangepurple 4y ago
They will accelerate cheap screening before treatments
- bulbosaur123 4y ago
  Early screening is usually the key. Cancers caught early can be easily treated.

bane 4y ago

Almost exactly 18 months ago, my then 87 year old father, after feeling unwell and having some fluid problems with his lungs was diagnosed with stage-4 lung cancer. He turned down treatment and died at home a couple days before Christmas last year. I've come away from the experience very unhappy with the medical system. There's a long list, things that in any other industry would be prosecuted. The medical and hospice systems are as near to worthless as any amount of money can buy -- at most times an absolute farce. These were people who went out of their way to make things a little less worse, but they all worked on the periphery of the system: drivers, suppliers, and so on. Fuck cancer, but also fuck the American medical system, and anybody who's gotten in the way of making it more sane and compassionate. I miss my Dad.

fdhfdjkfhdkj 4y ago
burritas 4y ago
I'd rather not go into personal detail but I share a similar experience. The thing that really drove it home for me was when I got back home and was telling my own doctor about my experience dealing with family in the medical system and she said I was mistaken or there was a misunderstanding because that kind of thing doesn't happen. I asked why she was siding with a doctor she'd never met before instead of listening to her patient, which got her pretty flustered. I don't see her anymore.
- jacquesm 4y ago
  The one thing that every doctor should have happen to them is to go through the medical system as well for something non-trivial. That usually gives them a lot more perspective on the reality of being on the receiving side.
  - toomuchtodo 4y ago
    Some doctors have a more healthy relationship with death than others. https://www.huffpost.com/entry/doctors-death_b_1500871 https://www.huffpost.com/entry/doctors-death_b_1500871 https://www.theguardian.com/society/2012/feb/08/how-doctors-choose-die https://www.theguardian.com/society/2012/feb/08/how-doctors-...

INTPenis 4y ago

Cancer is just so unfair.

terran57 4y ago

Two very personal experiences to relate. --- My father died 7 weeks after he was diagnosed with liver cancer - 11 days past his 62nd birthday. Prior to the diagnosis, he was going to take early retirement at 62 and travel with my mother. He had lots of other plans for post-retirement that he never got to realize. --- A close friend of mine died of heart cancer (well, technically, he died from complications of having an artificial heart - but cancer ruined his natural heart). He had thought he'd beaten cancer before (in the leg) and after repeated clean-bills of health, he finally thought it was safe to marry his fiancé and have a couple of children. But instead, cancer re-emerged and claimed his life. He left behind his fiancé', grieving parents, sisters and left a large hole in the community. So yeah - fuck cancer.

ethics13 4y ago
Did your dad drink? I ask because my dad died of the same (although they never did find the origin other than liver) and he was not a drinker.
- mythhouse 4y ago
  I think > 30% of fatty liver disease comes from insulin resistance
  - ethics13 4y ago
    Yes, I've heard that as well but as I've said, the mystery is that he was 5"10' at 165lbs, he was fit. No diabetes or any health issues at all.
- terran57 4y ago
  Yes, in his earlier life he did, but he had really cut down on drinking in the preceding few years. Reflecting back on that time, I would say he knew something was wrong but was in denial about it.

t-writescode 4y ago

My mom had a cough that wouldn't go away and covid 3 or 4 times during the last 2 years. Turns out those symptoms were hiding breast cancer, which metasticized in 2 years, the chemo symptoms because too bad and so she had to stop, and now she's gone. She was 59. When I went to her house to tend to her dogs, she had been looking at retirement and hospice care for her "live out my last days" cancer life basically next door to me (she lives in a different state). Fuck cancer.

jcims 4y ago
The cough that wouldn’t go away was a bellwether to my wife’s ovarian cancer. She was incredibly stubborn when it came to medical issues and had been experiencing some pain in her side that I had been stressing for her to get seen for. She went to urgent care and they did nothing, bolstering her opinion that it was worthless being seen for it. The cough was a dry cough that was not very frequent but the older women in her periphery were very concerned about it. I didn’t think much of it, just a dry cough. The women in the other hand would say things like ‘I really don’t like that cough’ with a concerned face. I don’t know if they had an internalized correlation or it was just a sense of something wrong. It turns out that this is a fairly common symptom.
bane 4y ago
Argh, too young! I'm so sorry to hear about this. Covid has really messed up the system badly. The medical treatment funnel gets very myopic treating the most present thing first, and often misses other problems going on at the same time. With my Dad we think the doctors were very focused on some other health issues that were complications from a knee replacement he had done about 5 years before. The "you can only come in for a visit for one problem at a time" broken insurance system would have had him coming in all day, every day for visits, so he just went for what bothered him the most. Turns out his lung cancer wasn't his worst problem until it was.

brendabug 4y ago

I pray for you and your family and that the diagnosis is not true. Praying your work continues and that there will be breakthroughs from your work. Pray your passage brings you into the arms of long lost loved ones to comfort you.

brendabug 4y ago

Pray this diagnosis is not true and by some miracle you can be here longer. Pray your work leads to breakthroughs so your name is never forgotten. I pray if your passage is inevitable that your long lost loved ones will help you with safe and comforting passage, like I prayed someone was with my child.

justrudd 4y ago

This year, during a routine physical, my general practitioner felt some “lumps” in my throat. He wasn’t worried but wanted me to get a second opinion on them. two rounds of chemo and two five week five day a week rounds of radiation later, I no longer have the tumors in my throat. I was lucky. They got detected early and hadn’t metastasized. But holy hell was radiation treatment terrible. When I had my first round of chemo to ready me for my first round of radiation, it was easy to “ignore” the chemo. I can’t find the comment now, but they basically state “You get up, you go in, you get sick, you go home, rinse and repeat”. It sucked, but I could muscle through it. The radiation treatments? Damn. By the time the burning sensation in my neck and face got to a point I could ignore it, it was time to go in for another session. By the 3rd session of the 3rd week, my oncologist prescribed me sleeping and high dosage pain pills. My pharmacist didn’t want to refill my pain meds the 3rd time. Thought I had a pill doc that was letting me abuse them. But all through the pain and the uncertainty, the thing that affected me the most was - I really learned who, in my social circle, I could count on. Made me realize that most of my social circle is acquaintances not friends. Not loved ones. So cancer really opened my eyes to human connection. Now I just gotta figure out how to do it :)

donjigweed 4y ago
five week, five days a week radiation? was this "proton" radiation treatment?
- justrudd 4y ago
  No. The first treatment was electron since the tumors were in my throat and close to the surface. But my oncologist didn’t like the progress. So my second treatment was just standard photon. Both done with conformal.
gregfjohnson 4y ago
These days my job is writing treatment planning software for radiation treatment. Your post makes it more real from the patient’s perspective. The hope and goal is to move the probability needle of range of outcomes in a good direction. I hope your cancer treatment works out well for you.

michaelcao 4y ago

My father passed away 4 years ago because of lung cancer. Fu*k cancer. I wish you the longest possible time.

iamthepieman 4y ago

My youngest brother is 28, married with two kids and was diagnosed last Thursday with acute lymphoblastic leukemia. He was admitted to the hospital the next day as his platelet count was hovering between 20 and 30k. Low platelets is below 50k where they recommend you don't shave, use a nail clipper or knives, bend over or walk around barefoot. I know you need to be your own advocate in the healthcare system but he has no concept and I don't know enough to be able to know if he's getting the right care. In general I trust the healthcare system. But I want to know that the doctors considered x, y and z and didn't choose because of such and such reasons even if those reasons are "we don't have the facilities or experience for those treatments" But what we get are perfunctory stat reports and then sudden announcements that they are going to be doing something in the next 4 hours. The communication is worse than any software project I have ever been on. I need to invest time in learning about his illness without getting a doctorate but don't have any doctor friends to even point me in the right direction.

jrnichols 4y ago

This is something that I see rather often in my career and I wanted to pass along one very important thing that I've learned over the years - please be sure that you have a will or an advanced directive in place. PLEASE do this. Have that difficult conversation about what steps you want taken to save your life. Do you want chest compressions? Do you want a tube inserted in your airway to assist you in breathing? Do you want heroic measures to be taken even if they may not save your live? Do you want to be placed on a mechanical ventilator? The reality is that many people don't have these conversations and then something happens to them and there is legally no way to abide by their spoken wishes. Your wishes need to be written down. Contact an attorney. Put an advanced directive on file. Your local hospital may be able to help. In many states, there are "out of hospital DNR" forms that we MUST have in order to terminate resuscitation efforts should it come to that. In other words, if you collapse, someone calls 911, and there is no paperwork, we are legally required to start life saving resuscitation measures and continue them. without legal documentation, things get really sticky, and it gets even worse if family is involved. Like someone else noted, the "daughter from California syndrome" is very real. the difficult conversations about your end of life issues may be the most important ones you ever have.

tekknik 4y ago
When it’s my time to go, I want to go. All of this trauma caused to family members isn’t worth it. This seems like a desperate attempt to save something that will end regardless of your actions. Property goes to the immediate next of kin in the absence of a will. A will is almost next to useless.
- jrnichols 4y ago
  > Property goes to the immediate next of kin in the absence of a will. Not accurate. It will often go into probate court or become property of the state. > A will is almost next to useless. False.

ghosthamlet 4y ago

Maybe you can try do more Exercise, Exercise is medicine for cancer and every dose counts - even in late stages of the disease: https://www.ecu.edu.au/newsroom/articles/research/exercise-is-medicine-for-cancer-and-every-dose-counts-even-in-late-stages-of-the-disease https://www.ecu.edu.au/newsroom/articles/research/exercise-i...

theandrewbailey 4y ago

My mom died of cancer almost 2 weeks ago.[0] For about 2 years, it was managed well, and she did all the stuff she used to. In August, things started going downhill. I'm getting something for Christmas that no one should want: an inheritance. I love you mom, and I miss you. Don't worry, my brother and I are picking up the pieces, one day at a time. [0] https://news.ycombinator.com/item?id=33969098 https://news.ycombinator.com/item?id=33969098

thrww20221219 4y ago

[dead]

2143 4y ago

(Pardon my insensitive language — this is my way of coping). A few years ago while casually wandering YouTube I stumbled across a video [1] of a young girl explaining that her cancer is at a point of no return. Her name is Sophia Gall and she's from Australia. Apparently, she had cancer previously and underwent treatment. Unfortunately the cancer recurred. In the video she's pretty much scared, crying and hopeless. She did mention she'll be traveling around. Eventually, there were videos of her from Paris and a few other places. She seemed pretty cheerful then. Months — maybe a year — later I remembered her and seeked her YouTube channel. From the comments on her latest video that was released several months before, I learnt that she passed away. In her last few videos, apart from the physical pain she was surprisingly composed. Like, she had accepted her fate. I don't know why I said all that here. That whole thing about Sophia had thoroughly moved me. [1] https://youtu.be/yWiIyvQaNiQ https://youtu.be/yWiIyvQaNiQ (While searching for her video, I discovered that there's a whole bunch of youtubers with cancer.)

lcall 4y ago
That kind of thing is indeed moving. I have learned for myself that life, existence, doesn't end at death. Our choices matter, and there is hope for good things to come, depending on our further choices. More at my web site (in profile, nothing for sale, tech-simple site). (ps: the good things to come can include family ties and significant learning & growth: better, I would say, than this life, again depending on our choices.)