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

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

#231

Post by smeej »

jacurtis wrote: post #218
burritas wrote: post #113

Earlier quoted context omitted.

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…

I'll share another story as an example. Late last year I started having trouble swallowing. It started as a discomfort, and eventually turned into trouble breathing and inability to eat solids. I went from perfectly healthy (literally ran a triathalon two months before this, and a marathon a few months before that) to unable to eat solids and bedridden within ~3 weeks. I visited the ER a total of 5 times during those…

This reminds me of the old joke, "What do you call the guy who graduated last in his medical school class?" "Doctor."

I went to school with many people who went on to become doctors. I can say with confidence not one of them is inherently better at researching, learning about, and coming to understand something than I am.

I didn't choose to go to medical school. They did. But if I'm going to dump thousands of hours into researching what's going on in my own body, I will know more about my body than they do. The fact that I found another subject more interesting for my graduate degree doesn't mean I'm incapable of learning what they did, from first principles if necessary.

I get why they're tired of having to address everything someone says they found on the internet, but we're not all idiots out here.

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

#232

Post by pyuser583 »

trhr wrote: post #69
pyuser583 wrote: post #51

Earlier quoted context omitted.

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 deca…

Pretty sure all you need is a death certificate, which should be on file at her local courthouse.

I’m thousands of miles away from her local courthouse.

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

#233

Post by gregfjohnson »

justrudd wrote: post #210

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…

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.

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

#234

Post by benatkin »

the_sleaze_ wrote: post #199
burritas wrote: post #113

Earlier quoted context omitted.

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…

My own father passed roughly a year ago as well, also at a particularly advanced age. I had a similar experience, where I became frustrated with the lack of what I perceived to be care. As in "give a shit", or even a desire to find an actual diagnosis. One doctor told me, as my father lay intubated a foot away, that [the Dr's] best gift he gave his own parents was to DNR them so they never spent a day in a nursing ho…

> It may be that there was more for the medical system to do, there may not have been.

I think you're mistaken if you think bane's complaint goes away if it turns out they couldn't have saved him. For one thing, bane said his father refused treatment, but still had a complaint with the hospice. The complaint with the hospice probably wouldn't be that they didn't save him from succumbing to his illness because that's not what the hospice is tasked with doing. When someone has a terminal illness and refuses treatment what they are supposed to do is provide care while their illnesses kill them. They are to provide needs so other things don't kill them, not kill them earlier or make their conditions worse with laziness or incompetence. One example of something cancer shouldn't cause is bedsores from not being moved out of bed periodically. From how bane wrote of it, it seems like they were very far from any reasonable standard of care, so it would be hard to say what specifically would have gone better with his father's physical and mental condition during his months after diagnosis.

As far as bane's father's diagnosis, I think it's likely if the medical system had worked harder to diagnose him they could have.

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

#235

Post by zamalek »

benatkin wrote: post #234
the_sleaze_ wrote: post #199

Earlier quoted context omitted.

My own father passed roughly a year ago as well, also at a particularly advanced age. I had a similar experience, where I became frustrated with the lack of what I perceived to be care. As in "give a shit", or even a desire to find an actual diagnosis. One doctor told me, as my father lay intubated a foot away, that [the Dr's] best gift he gave his own parents was to DNR them so they never spent a day in a nursing ho…

> It may be that there was more for the medical system to do, there may not have been. I think you're mistaken if you think bane's complaint goes away if it turns out they couldn't have saved him. For one thing, bane said his father refused treatment, but still had a complaint with the hospice. The complaint with the hospice probably wouldn't be that they didn't save him from succumbing to his illness because that's…

Agreed. I am a person who would want millions spent to save my life, but despite that I take further issue with all this: people who refuse treatment are forced into a hospice because they are not allowed to choose euthanasia.

You either suffer through a shit medical system, or have a needlessly painful/uncomfortable death.

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

#236

Post by iamthepieman »

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.

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

#237

Post by brandonmenc »

jacurtis wrote: post #218
burritas wrote: post #113

Earlier quoted context omitted.

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…

I'll share another story as an example. Late last year I started having trouble swallowing. It started as a discomfort, and eventually turned into trouble breathing and inability to eat solids. I went from perfectly healthy (literally ran a triathalon two months before this, and a marathon a few months before that) to unable to eat solids and bedridden within ~3 weeks. I visited the ER a total of 5 times during those…

> I had asked for basic tests like a metabolic panel or other broad tests

You researched the internet for a whole year but never found out that you can just pay someone like Private MD Labs [0] a hundred bucks and get this done yourself?

Sorry, but I'm skeptical.

[0] https://www.privatemdlabs.com

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

#238

Post by jrnichols »

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.

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

#239

Post by bane »

mythhouse wrote: post #195
jacquesm wrote: post #124

Earlier quoted context omitted.

So many stories like yours. They are one of the reasons living in the United States never appealed to me. With Christmas coming up this must be a very hard time for you, hang in there.

I've lived in India, UK and USA for atleast 5 years in each. I would take USA in a heartbeat if I can have good insurance You are getting cutting edge care in USA. For example, My father has prostate cancer and latest NCNN guidelines recommend 'triplet therapy' [1] at diagnosis and is the standard in USA. But in UK they you only get chemo and ADT via NHS. They also have major delays (years) in getting latest medical…

My personal experiences aside, one of the biggest problems with healthcare in the U.S. is that you do need insurance to get it. Otherwise the absolutely unreal cost for even the most basic interactions will bankrupt virtually anybody quickly.

It turns out the times when people need healthcare the most is when they're the sickest, which is when they're least likely to be able to hold a job down, which is what most good insurances are tied to.

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

#240

Post by listenallyall »

smeej wrote: post #231
jacurtis wrote: post #218

Earlier quoted context omitted.

I'll share another story as an example. Late last year I started having trouble swallowing. It started as a discomfort, and eventually turned into trouble breathing and inability to eat solids. I went from perfectly healthy (literally ran a triathalon two months before this, and a marathon a few months before that) to unable to eat solids and bedridden within ~3 weeks. I visited the ER a total of 5 times during those…

This reminds me of the old joke, "What do you call the guy who graduated last in his medical school class?" "Doctor." I went to school with many people who went on to become doctors. I can say with confidence not one of them is inherently better at researching, learning about, and coming to understand something than I am. I didn't choose to go to medical school. They did. But if I'm going to dump thousands of hours i…

Also good advice if you ever find yourself in need of a lawyer.
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