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Eschers Basement
Sep 13, 2007

would you eat
to make it stop?


This thread might actually belong in A/T, but I'm probably going to e/n all over it, so I figured it'd be safer to put it here.

So I have this friend Dave. He's been a good friend of mine for over fifteen years. He's my wife's best friend. He runs second only to the grandparents in the category "adults our son likes to hang out with".

He also has just been diagnosed with Stage IV pancreatic cancer.

My father passed away from pancreatic cancer, so I'm reasonably familiar with the odds here. Namely that they suck, and that pancreatic cancer is the worst of all cancers because you never catch it until it's far too late to do anything about it. So right now I'm a terrified bundle of fears and worry and sadness because my friend is dying, because my wife's best friend is dying, because our son's godfather is dying, because I'm going to watch someone die in the same way my father died and I can't do anything about it, because my wife is going to run herself into the ground trying to take care of him, and because I'm realizing I'm at the age where my friends are dying of natural causes. Not necessarily in that order.

But that's not really what this thread is about.

What this thread is about is a request for information and knowledge about what I can do to make Dave's life easier. Dave is broke and unemployed, and has been living off odd jobs and the kindness of his family and friends for a few years. He has crappy Obamacare insurance and not much else, and it's not cheap to fight cancer in America. I'm terrified for his parents, who not only get to watch their son die, but may have to come of out retirement to pay for being able to watch their son die. I do not know his parents' financial situation. It may not be that dire. I want to help, but I don't have the resources to personally pay for his chemo. We're helping him get his disability paperwork together, but the SSI instructions loudly declare that it might take 3-5 months to process the paperwork, and I'm not sure he'll be around for that, let alone the two years it'll take for Medicaid to kick in.

So, does anyone here know of any good non-profits or government services willing to help a non-religious middle-aged guy be comfortable and without financial worries for the last few months he's around?

Thank you.

Also, if you've gotten to the end here and are sad that it wasn't funny or enough of a trainwreck to be interesting, please let me know what I can post to step up my game a bit, as quite frankly anything I do tonight to take my mind off how sad and terrible the next few months are going to be would be greatly appreciated.


Edit: Having thought about it a while, I'm probably being very unbalanced in asking for government/non-profit mooching for the so-called 'disabled' to be the only solution. Therefore, if you have a free market get-rich-quick scheme that's perfect for a cancer patient, I would accept that as well. Currently, I'm thinking about having him put together a webcomic and running a kickstarter - that seems to not only ensure lots of donations, but no one ever seems to expect any return on the donation, and if anyone complains about the lack of a comic, I can say it's on the same update schedule as Aaron Diaz.

Eschers Basement fucked around with this message at Apr 16, 2014 around 00:41

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Lolie
Jun 4, 2010


It might help if you mention the state in which Dave is located. From what I gather, a lot of health related programmes which might be able to help out operate at state level.

You can look into stuff which no-one wants to think about right now so that someone else (especially his parents) doesn't have to do it as Dave becomes more ill. How does hospice/palliative care work in Dave's location? What options are available for in-home help? What options are available for funerals for poor people?

I seem to recall that the processing of disability can be accelerated if certain terminal conditions are involved but I'm not sure of the specific requirements and whether cancer is one of the conditions. There'll be US posters who can advise on this.

How well is Dave at the moment? Are there things you mightn't be able to do with him in a few months which you'd like to take the time to do again now?

You know Dave, we do not. Even if paying for chemo could be arranged, is it something Dave would want? You might need to clarify this with him. He might rather that funds be spent on quality of life/hospice than on treatments which are lovely in themselves and have little hope of extending his life.

Are there things Dave does for his parents which you could help out with as he becomes unable to do them. I suspect he's going to be concerned about the impact his illness will have on his parents and you promising to be there for them will mean a lot to him.

If he's up to it, encourage him to leave your son a written/audio-visual legacy of some kind. And let him spoil your son rotten with fun stuff that's normally reserved for special occasions. You're making memories now. Relive every funny moment you've had together. Dying is serious business but laughing along the way will benefit you all.

Eschers Basement
Sep 13, 2007

would you eat
to make it stop?


We're in Virginia.

Dave's... okay right now. He's gaunt and weak and has lost a lot of weight, but they have him on painkillers that let him sleep (which he wasn't able to do for a month due to stomach pain), so he's feeling rested but weak.

I don't have a clue about what hospice options there are, but that's a good place to start looking, thank you.

Right now, we're treating life as mostly unchanged because the doctors haven't given him a full "this is how long you have" prognosis. I think they want to see how the chemo goes, which he starts on Friday.

I don't know that paying for oncology is an issue; it's more that whenever the "if you only had two months to live, how would you spend it" conversations never quite ask "if you only had two months to live and couldn't afford to do anything, how would you spend it". Maybe there's something he wants to do that I can help fund or fundraise. I haven't asked those questions yet because I'm not quite ready to respond to his talking about chemo and moving forward with "Yes, but..."

Thanks.

Saros
Dec 29, 2009

Its almost like we're a Bureaucracy, in space!

I set sail for the Planet of Lab Requisitions!!

Wow that really sucks I am so sorry. S4 Pancreatic is about as bad as it gets. (Op you may not want to read this) 5yr Survival rates under 1% :-(
u
However cancer treatment moves really fast and there is always something new being tested. The only advice I can give is do some research for clinical trials of new chemo drugs. With the lack of insurance its probably his best bet for cutting edge treatment and with S4 pancreatic everything by necessity moves fast.

Rodent Mortician
Mar 17, 2009

SQUEAK.


Talk to the hospital itself, most have internal charity care type programs, especially if they've got cancer specialty centers. Their website may have some resources, but also call the clinic itself and ask. Ours does, and it's a huge help to those who are financially unable to pay. If he's at a private hospital, explore a public hospital and see if they have cheaper prices/better charity funding.

Also contact the county he's living in and see what resources are available. Even if they can't provide money or healthcare, they may be able to provide other services, like respite caretaking and providing transportation if he's unable to drive and helping to coordinate medical appointments. That may take some of the pressure directly from your wife.

Hospice is also an excellent suggestion, they are good people and they'll know a lot about community resources.

Seven Hundred Bee
Nov 1, 2006

give more people whale avatars (not me tho)

Where in Virginia? Help him look for pancreatic cancer treatment trials he can get into - best bets are UVA, MCV or even Georgetown.

Here's a link to search for clinical trials at Massey Cancer Center (part of MCV): http://www.massey.vcu.edu/clinical-trials/find/

Here's UVA's: http://www.healthsystem.virginia.edu/pub/ct#b_start=0

Seven Hundred Bee fucked around with this message at Apr 16, 2014 around 02:57

jabby
Oct 27, 2010


Eschers Basement posted:

Right now, we're treating life as mostly unchanged because the doctors haven't given him a full "this is how long you have" prognosis. I think they want to see how the chemo goes, which he starts on Friday.

Doctors avoid giving predictions like that as much as possible, because they mean so much to the patient but are so often wrong. The most definite prognosis you may get is that its likely to be months rather than years. Sorry to hear about your friend.

Kidsolo
Dec 4, 2006
Probation
Can't post for 3 days!


Eschers Basement posted:

and if anyone complains about the lack of a comic, I can say it's on the same update schedule as Aaron Diaz.

so you want to scam people?

dantae
Aug 7, 2003
rar

Eschers Basement posted:

We're helping him get his disability paperwork together, but the SSI instructions loudly declare that it might take 3-5 months to process the paperwork, and I'm not sure he'll be around for that, let alone the two years it'll take for Medicaid to kick in.

I decide SSA disability claims in New York. We have a system for handling cases in which it's likely to be terminal and the normal case processing time frame is too long. I'm not sure if Virginia has the same, but in any case, the sooner you apply, the sooner you'll get a decision back. Also, if you include the path report and operative note when you apply, that will help get the case through quicker.

Horrible Smutbeast
Sep 2, 2011


While your friend is doing the paperwork stuff you can always offer to help cook for him, keep his place tidy or take him out.

If your friend is serious about the comic project there's only really two kinds that get big fast - The first one is videogame humour and the second is gay porn. I'm pretty sure people are suckers for the "I am dying here's my autobiography!" type comics too but it may be too personal for your friend to do. That's pretty much what all my friends who make a living off their comics recommend if you're in it just for the cash.

Problem is it takes a few months for it to start paying out for ad revenue.

Another option is to use some sort of game making program to make an indie game. Takes a while too but you can get some good returns as well as having something to do on your laptop when you feel too ill to get out of bed.

Romes
Jun 18, 2003


TheChive.com ...For being a comedy/sexy girls picture site, they also help a lot of people battling illnesses get the treatment they need. They have the Chive Charities. Send them your entire story and see what happens.

Eschers Basement
Sep 13, 2007

would you eat
to make it stop?


Thank you all for the replies so far. The comic thing is completely a joke inspired by reading the Jon Campbell and Terrible Webcomic threads.

On the other suggestions:

* We're going to try and set Dave up with an interview with the SSI folks so that he can apply for disability on a Terminal Illness (TERI) case, which should massively expedite it.

* I know the doctors won't tell him how bad off he is (they wouldn't when my father was sick), but we're still at the point where they're about to start chemo and see what happens, so we're still kind of at the "a 1% chance is still a chance, right?" stage.

* Hospice is a good idea, and I'm putting together lists of local people to talk to about that, but it seems like much more of a "now we're done with treatment and we're going to manage the end" thing, which isn't quite where we are yet.

* I've checked for local resources and found that the American Cancer Society has an office near us and can help out. They had a "Road to Recovery" program where volunteers can take Dave to his doctor's appointments.

I'm still checking to see what resources the hospital has.

Thanks all for the suggestions and the help. Even just being able to talk about it to other people helps.

JacquelineDempsey
Aug 6, 2008


I have absolutely no experience with it, but there's GoFundMe. You don't have to provide rewards for the backers (hey, just like John Campbell!), the donations come to you in real time, and it can be for more personal needs, not just projects.

They have a whole section for ailing folks:

http://www.gofundme.com/Medical-Illness-Healing/

My mom's in the last stretch of her bout with terminal cancer, so my heart goes out to you and Dave.

jabby
Oct 27, 2010


Eschers Basement posted:

* I know the doctors won't tell him how bad off he is (they wouldn't when my father was sick), but we're still at the point where they're about to start chemo and see what happens, so we're still kind of at the "a 1% chance is still a chance, right?" stage.

They won't give him a definitive 'this is how long you have left', but they should be providing him with realistic information, otherwise he can't make informed choices about his treatment. At this stage there is no possibility of a cure, so everything needs to be focused on the quality and length of the time he has left.

I would urge you not to put off getting hospice involved. The move between active treatment and end of life care should be a smooth transition rather than an abrupt switch. They are the experts at symptom management and their role can gradually increase as necessary. Their goal is always to maximise quality of life and extend it wherever possible, so its important not to think of them only as the last step before death.

Lolie
Jun 4, 2010


Eschers Basement posted:



* Hospice is a good idea, and I'm putting together lists of local people to talk to about that, but it seems like much more of a "now we're done with treatment and we're going to manage the end" thing, which isn't quite where we are yet.



I've been through this with three people in my life. It's much, much easier to find out what you need to know and make initial contact when you're in the "treatment might help" stage than it is when you're emotionally overwhelmed by the reality that further treatment will be futile. It's emotionally exhausting to have to deal with researching stuff at that point. At least finding out now how to go about arranging end of life care will help you avoid getting the run around later.

With aggressive diseases, the need for end of life care can happen very quickly (sometimes in days). Even before that point, hospice may be able to direct you to services which make dealing with serious illness easier - accessing things like shower chairs, commodes, teaching you how to maintain skin integrity and avoid pressure sores if someone has become less mobile, obtaining mobility aids at low cost or free, accessing subsidies for special nutritional products if that becomes an issue, etc. You can't keep ahead of the disease itself, but anticipating needs can spare you the stress of frantically trying to arrange stuff days or weeks after it's needed.

Here, palliative care likes to get involved early. Even if all they're doing initially is providing a bath seat or other "community nursing" functions, they like to get to know the patient and their carers so that their entry into people's lives is less abrupt and disruptive when more intensive involvement is needed.

I truly understand that no-one really wants to perceive end of life issues as being "necessary" or relevant right now, but it's a worthwhile investment of time and energy. If they're never needed - and it does happen - fantastic.

Yep. Assistance with transport, volunteers for companionship, day programmes, household assistance, etc are things which are usually available and your local cancer organisation should have all the details as should the oncology unit where Dave is being treated (they'll have a social worker).

One thing we struggled with was our days revolving around other people's schedules. Your treatment happens at a time determined by the hospital. You go shopping when volunteers can take you. The nurses come to assist on a schedule set by them, etc, etc. It's a big adjustment and it feels like a massive loss of independence, no matter how grateful you are for the help. I know I felt dispossessed of my space at times because it was often over-run by equipment and a constant progression of people.

People don't really talk about it much but being around other people who are being treated for cancer is very confronting. Regardless of how positive you're determined to be, you're going to be exposed to people whose condition is deteriorating and some of your fellow patients are going to die during your treatment period. Seeing others suffer takes an emotional toll on cancer patients which adds to the stresses they're already under.

Doctors can at times seem very dismissive and their answers can seem at odds with what patients observe happening to others. It's important to feel that someone within the medical team will listen to and address a patient's fears.

You said that Dave has been unemployed and broke for a few years. Do you know if he has any retirement funds/insurance which become accessible in the event of terminal illness? It's possible that he does if he's middle aged and has worked in the past.

Another thing to investigate is the issue of medical proxies. This may default to Dave's next of kin under state laws but it may not. Dave might be happy for his parents to make decisions if he cannot or he may wish to spare them that burden. Even if Dave's parents retain that authority, if he wishes you and your wife to be able to talk to his health care team then make sure that is put on record sooner rather than later (keep copies of that authorisation yourselves, too).

Also, it may be possible to get authority to deal with other stuff on behalf of Dave if that's something you or your wife would like to do to take pressure off him. Many government agencies and businesses allow you to authorise a nominee to deal with them on your behalf and enduring power of attorney can be used even when someone isn't incapacitated. It's stressful on the person authorised, but it can relieve the sick person of the burden of having to deal with a shitload of "business" stuff.

Lolie fucked around with this message at Apr 16, 2014 around 21:15

Obdicut
May 15, 2012

I'm Obdicut! You'll go where I go, defile what I defile, eat who I eat!

Contact constituent services of his state rep/senator. Some of them are useless, but some of them are fantastic at either pushing through paperwork or hooking your friend up with other services.

Make sure Dave's family really clearly knows what his wishes as far as resuscitation goes.

SodomyGoat101
Nov 20, 2012


The oncologist's staff can be an amazing help, don't underestimate them. Many of them will be more familiar with local programs than you, and some might even know ways to expedite the TERI claim. When my mom was diagnosed, she was initially rejected by SSI (like literally everyone else is on their first application), but one of her nurses filed claims on her behalf and she received her benefits within two weeks.

I'm sorry for your friend, op. Hang in there.

Eschers Basement
Sep 13, 2007

would you eat
to make it stop?


Thanks very much for all the advice; my heart goes out to the rest of you who are dealing with/have dealth with this horrible, horrible poo poo.

Dave's doing his first round of chemo today. I've talked to my wife about the stuff you guys have talked about and I think we're better prepared for the next few months. We'll definetely be talking to the hospital and begin looking for hospice care.

Again, really appreciate the suggestions and advice. Y'all are great.

FAGGY CLAUSE
Apr 9, 2011



Terminate him.

kizudarake
Apr 11, 2007


No matter what, don't let him let anyone cosign for his medical care. Some hospitals and cancer treatment centers will ask someone to sign as the 'responsible party', making it sound like they're asking for next of kin, but what they really want is for someone to say they'll pay his hospital bills if he dies and leaves no estate. His parents should not feel responsible for his bill if he passes.

Also, the drug companies should have programs, even for chemo drugs, that can help reduce the prices based on his ability to pay. He needs to contact the manufacturer of his specific drug.

The only other thing I can suggest is for you to try to keep him laughing.

Eschers Basement
Sep 13, 2007

would you eat
to make it stop?


Hey, all. Thanks again for all of the support and information. Dave's parents pretty much swept in and took charge, so we passed most of the advice on to them.

Dave stopped chemo pretty quickly after he started when it became clear that he was doing it mostly to make his parents happy, and he moved into a hospice where they've been trying to manage his pain and get food to stay in him. At this point, his doctor gives him less than two weeks, but he's had friends from all over coming to say goodbye and he's come to peace with what's happening.

Thank you again for advice, for listening, and for letting me vent nervous and frightened energy in poor attempts at humor.

Call the people you love and tell them you love them. You have less time with them than you want.

VidaGrey
Mar 19, 2009

The more I see of men, the more I like dogs.



Good to know that your friend is surrounded by people who love and care for him. Thats all anyone can ask for in the end. I'm very sorry about your situation. I recently lost someone to cancer as well and, well, gently caress cancer.

Chubba
May 30, 2011


I'm glad Dave is at peace with everything and that he's surrounded by love. I hope you, your wife, and everyone who loves him lean on each other to get through the loss of such a great friend.

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Eschers Basement
Sep 13, 2007

would you eat
to make it stop?


Thank you both.

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