Terminal Illnesses Megathread

[LastLoveLetter]

This is a Megathread where members who are suffering with a terminal illness can post their experiences, vent, connect with others in a similar situation and give/receive support.

You can post as often or as infrequently as you like. Share as much or as little as you feel comfortable with.

Staff will monitor this thread to ensure it stays on topic and is a safe, supportive space for those who participate.

 

[YourNeighbor]

/Edit/ - Removed my background as it seemed to be generating hug emojis from spectators and not engagement from fellow terminally ill folks. Don't think anyone wants this thread to be a fishbowl.

Will keep it simple.

Anyone else here facing a terminal diagnosis? Are you still functional? How are you coping? What are your plans?

I'm glad to have come across SaSu, as it gave me an alternative to dying a nasty natural death (if I have the guts to take the option--looking at future multiple organ failure, so no pun intended).

 

[LookieLou]

I'm here with a disease that'll kill me if I wait for it. My muscles will stop working in different areas over a period of time until my lungs just can't do it anymore. I'm not waiting that long with an intact personality inside a non functioning meat bag.

ive read Final Exit and looked into Swiss euthanasia, but I don't need to spend the $20000 and the travel it would take to get to Switzerland so doctors there can "approve" my wishes And give me $50 worth of pills.

so I'm here to share with others and hear their points of view.

 

[YourNeighbor]

I'm here with a disease that'll kill me if I wait for it.

Glad someone else joined the thread, though sorry to hear what you're going through. For as many suicides as are completed by the terminally ill, it's kinda surprising there are so few of us here. May be because the general forum is not set up for our experience, and is full of kids often making light of terminal illness.

I too considered Switzerland, but something about setting a schedule for my death, travel in my condition (though I always wanted to visit), and the crazy cost puts me off. On the other hand, I wonder if being in a clinical setting makes the act easier to go through.

Medical aid in dying really should be protected by law -- hospice and palliative care cannot help everyone, that's a huge misconception.

Have you planned your exit yet? Will you have a get together with family/friends? I'm on the fence. Don't think I will want to be alone, and don't think my partner should be alone with me, but not sure I can pull off a "festive" event either. It crossed my mind to rent a big house somewhere, organize a party, and go out after without necessarily an announcement, but that's probably more fantasy than anything.

Then there's the question of how long to wait. I don't want to wait necessarily until I'm completely disintegrating (and don't want to be remembered that way) but I'd like to stick around as long as I'm relatively functional. How's your prognosis? Mine has range, from months to a few years, but the last months etc. are sure to be excruciating and gruesome if I wait long enough, including likely losing my mind from body toxins.

 

[LookieLou]

It's good to find someone else here. This has been a long lonely painful trip to get this far, and unless I do something, will be a lot longer and more painful. I have I'm guessing about 3 years but things seem to be getting more difficult faster than I'd assumed.

My biggest concern is suddenly having a symptom I simply can't manage on my own and being forced to go along with someone else's plan, which might be radically different than my own. A stroke, for instance, could make me completely dependent. I'm "the world's most independent woman" according to my 32yo daughter, and can't imagine something worse than being forced to live in a place with despair all around me.

ive gotten together with a lawyer who says I can refuse any medical care legally, but if I have had a stroke I may not be able to tell them I don't want the first medicine they'd give me, which is made to lessen the effects. My mom and grandmother died of what were initially strokes, but my mom survived, heavily impaired, for 7 months, until she refused to eat or drink in the nursing home that was her hell.

I tried ctb 3 years ago with alcohol and pills but woke up in intensive care furious I was still here. I'd apparently taken a bad fall in the hotel room that I can't remember. it must have been loud. Hotel staff broke into my room. I suffered lasting damage andended up with a numb shin, ankle and toes, which added to my need for a cane, then a walker, and soon, a wheelchair.

I have been clear with siblings and my daughter I will not choose to live through to the natural end of this disease but it took a lot of deep conversations and mounting symptoms to show them my point of view, which is that I've lived an adventurous full life and there's nothing on my bucket list, so why should I sit and wait around for more of this?

Here in the US I could move to another state that requires 6 months of residency before I can even begin to ask for permission but that move would be awful, and I don't think I should have to ask for permission anyway.

I assume I will be alone for the process, in deference to others who just can't be present. I respect the pain it would put them in and don't want to make it more difficult. I know I can't be responsible for their pain but if I can lessen it by explaining my reasons and by leaving quietly, I'll do it unless they say they would like to be included.

we had a party for my dad after he died. I was his executor and there was plenty of money to fly the family to Florida and rent a big house for everyone. I'd cleaned out his house and brought lots of things I thought they might be interested in having, and we sat around a giant dining table with all the stuff in the middle as everyone chose. We had a 3 day weekend and there were lots of good memories.

 

[YourNeighbor]

Here in the US I could move to another state that requires 6 months of residency

Not sure which state you were considering. When I was looking at CA, I didn't see anything in the statutes that requires a minimum time to establish residency. I contacted a doc who specializes in MAiD to ask specifically what his office requires to show residency, his office mentioned a rental agreement or statement from a family member that one has moved in with them would be enough. It my be a state by state question, but it seems like residency for MAiD is not the same as residency for state benefits, like say, in-state tuition or healthcare. MAiD often has to be paid for out of pocket, so it doesn't seem there would be any basis to establish onerous residency requirements.

May be something to double check depending on the state you were looking at. Have you connected with any MAiD advocacy groups? Compassion and Choices is one I've seen in my state, as is Death with Dignity (though I don't expect our lawmakers to seriously consider MAiD any time soon.

 

[LookieLou]

Not sure which state you were considering. When I was looking at CA, I didn't see anything in the statutes that requires a minimum time to establish residency. I contacted a doc who specializes in MAiD to ask specifically what his office requires to show residency, his office mentioned a rental agreement or statement from a family member that one has moved in with them would be enough. It my be a state by state question, but it seems like residency for MAiD is not the same as residency for state benefits, like say, in-state tuition or healthcare. MAiD often has to be paid for out of pocket, so it doesn't seem there would be any basis to establish onerous residency requirements.

May be something to double check depending on the state you were looking at. Have you connected with any MAiD advocacy groups? Compassion and Choices is one I've seen in my state, as is Death with Dignity (though I don't expect our lawmakers to seriously consider MAiD any time soon.

Thanks for the information. I hadn't checked the sources you mentioned, I was thinking about Oregon and Washington DC.

 

[YourNeighbor]

Thanks for the information. I hadn't checked the sources you mentioned, I was thinking about Oregon and Washington DC.

FWIW, Oregon also does not require a minimum time length to establish residency for MAiD purposes. I don't think anyone should be forced to move across state lines to access MAiD, but may be an option at least. California just recently did away with the 15 day waiting period requirement.

Oregon Health Authority : Frequently Asked Questions : Death with Dignity Act : State of Oregon

Frequently asked questions about Oregon's Death with Dignity Act

www.oregon.gov

 

[aristotle is ok]

I suffered trauma to my neck 10 yrs ago. It damaged the spinal cord and I've been gradually losing control since the injury 10 yrs ago. I'm 69 now and I don't plan to be around for my 70th in Sept. The pain, the imbalance, the walker, NOT gonna get to the point I need a wheelchair. I've written other threads to describe in more detail all the details, I am too hurting just now to type all that stuff again here now. If you're interested I'm sure you can review my posts, there aren't many b/c I don't consider this forum to be somewhere I go to make friends, don't take that the wrong way, I'm here to learn, to give hugs and replies, but not to become a long term member with 4 yrs and thousands of posts. I've got the SN, and although I'd really like the N method, I don't have the money (I heard somewhere it's in the thousands). So I take the baby aspirin (Tramadol) b/c I can no longer get the Oxycodone I was using for 5 yrs. I was in hellacious shape when the freak accident occurred, was a blocklayer for 30 yrs off and on. so I just want to be supportive of you who have terminal illnes etc. I saw my stepfather die from lung cancer, it took 9 months from diagnosis and it wasdn't pretty. He suffered a lot. It's not something I'd want anyone to go through. I'm pretty sure the last hospital visit, when he died, I suspect the Docs gave him something to heelp him die. Sorry for the typos, it's difficult to make my fingers obey my brain, and it's painful also. My you alll walk in the path of the buddha. And may God bless, if yer a believer. Thanks to all of you for being here, even those who've been here forever, There's a reason for it, and I'm grateful for the advice and support.

 

[Soill]

It's good to find someone else here. This has been a long lonely painful trip to get this far, and unless I do something, will be a lot longer and more painful. I have I'm guessing about 3 years but things seem to be getting more difficult faster than I'd assumed.

My biggest concern is suddenly having a symptom I simply can't manage on my own and being forced to go along with someone else's plan, which might be radically different than my own. A stroke, for instance, could make me completely dependent. I'm "the world's most independent woman" according to my 32yo daughter, and can't imagine something worse than being forced to live in a place with despair all around me.

ive gotten together with a lawyer who says I can refuse any medical care legally, but if I have had a stroke I may not be able to tell them I don't want the first medicine they'd give me, which is made to lessen the effects. My mom and grandmother died of what were initially strokes, but my mom survived, heavily impaired, for 7 months, until she refused to eat or drink in the nursing home that was her hell.

I tried ctb 3 years ago with alcohol and pills but woke up in intensive care furious I was still here. I'd apparently taken a bad fall in the hotel room that I can't remember. it must have been loud. Hotel staff broke into my room. I suffered lasting damage andended up with a numb shin, ankle and toes, which added to my need for a cane, then a walker, and soon, a wheelchair.

I have been clear with siblings and my daughter I will not choose to live through to the natural end of this disease but it took a lot of deep conversations and mounting symptoms to show them my point of view, which is that I've lived an adventurous full life and there's nothing on my bucket list, so why should I sit and wait around for more of this?

Here in the US I could move to another state that requires 6 months of residency before I can even begin to ask for permission but that move would be awful, and I don't think I should have to ask for permission anyway.

I assume I will be alone for the process, in deference to others who just can't be present. I respect the pain it would put them in and don't want to make it more difficult. I know I can't be responsible for their pain but if I can lessen it by explaining my reasons and by leaving quietly, I'll do it unless they say they would like to be included.

we had a party for my dad after he died. I was his executor and there was plenty of money to fly the family to Florida and rent a big house for everyone. I'd cleaned out his house and brought lots of things I thought they might be interested in having, and we sat around a giant dining table with all the stuff in the middle as everyone chose. We had a 3 day weekend and there were lots of good memories.

Can I ask how you plan to do it? I have several conditions that I can't medicate because I'm allergic to the meds. I have emphysema but can't use inhalers or steroids needed to stop infection, I have hiatus hernia but can't use the stomach acid pill because allergic, which means painful stomach when eating all the time and horrendous breathing and gut problems. I also have something called akathisia which is neurological brain injury caused by pharmaceutical medications. It gives me horrific daily and nightly symptoms and my body is also allergic to most pain medications. Needless to say when I get ill its extremely excrutiating and painful. I have looked at several methods but live thd UK so SN not really an option but I do need to have some kind of exit. What are your thoughts?

 

[LookieLou]

Hey, all.

I broke my hip and was in in-patient rehab for most of February, and my ability to take care of myself tok a big hit but I'm back … for now.

wheelchair here I come. I'm coming to terms with never going anywhere alone again because my neurologist says my balance isn't good enough to go anywhere on my own even though the hip surgery went well. It's a hard one and is pulling me down.

more and worse symptoms pop up every week.

I've been scared I'll be put into a nursing home after whatever the next disaster is. But I'm remembering that my mom chose not to eat or drink and died in a week, in a coma, which family members accepted as not being suicide, and that gives me last-ditch hope.

I'm oddly comforted about ending my life that way, either at home or in some facility, mostly because it's an accepted thing in nursing homes and because it would give my super conservative seriously religious daughter a chance to tell Herself she was there for a "natural end."

it also assures me I can get relief if I'm suddenly moved to a support system I don't want.

Otherwise I'd end it with some things I bought on the dark net, mixed with a nice big margarita.

 

[tanglyy]

i'm glad to see that this has been discussed before, i'm in the same boat and did not know about these right to die activist groups. there's one in my state which is comforting. thank you all

 

[outrider567]

I suffered trauma to my neck 10 yrs ago. It damaged the spinal cord and I've been gradually losing control since the injury 10 yrs ago. I'm 69 now and I don't plan to be around for my 70th in Sept. The pain, the imbalance, the walker, NOT gonna get to the point I need a wheelchair. I've written other threads to describe in more detail all the details, I am too hurting just now to type all that stuff again here now. If you're interested I'm sure you can review my posts, there aren't many b/c I don't consider this forum to be somewhere I go to make friends, don't take that the wrong way, I'm here to learn, to give hugs and replies, but not to become a long term member with 4 yrs and thousands of posts. I've got the SN, and although I'd really like the N method, I don't have the money (I heard somewhere it's in the thousands). So I take the baby aspirin (Tramadol) b/c I can no longer get the Oxycodone I was using for 5 yrs. I was in hellacious shape when the freak accident occurred, was a blocklayer for 30 yrs off and on. so I just want to be supportive of you who have terminal illnes etc. I saw my stepfather die from lung cancer, it took 9 months from diagnosis and it wasdn't pretty. He suffered a lot. It's not something I'd want anyone to go through. I'm pretty sure the last hospital visit, when he died, I suspect the Docs gave him something to heelp him die. Sorry for the typos, it's difficult to make my fingers obey my brain, and it's painful also. My you alll walk in the path of the buddha. And may God bless, if yer a believer. Thanks to all of you for being here, even those who've been here forever, There's a reason for it, and I'm grateful for the advice and support.

Yes, my 66 yr old brother has terminal lung cancer--He just started his chemo treatments three days ago--I dread what he will be going thru, the doctors say he has about 6 months--Unlike us, he enjoyed the thought of going another ten years but his 50 year smoking addiction is destroying him

 

[Sky66]

I'm a terminal cancer patient. My life was perfect before the cancer diagnosis.
Did the cancer treatments which destroyed my life. Cancer was gone but I felt miserable. Luckily the cancer returned and was stage 4. Did some treatments just for the show. Quit the treatments and now I let the cancer to finish the job. My stupid doctors don't understand and are gaslighting me.
My parents still think I got the treatments and they still think (hope) I can be cured lol.

 

[Rational man]

I'm a terminal cancer patient. My life was perfect before the cancer diagnosis.
Did the cancer treatments which destroyed my life. Cancer was gone but I felt miserable. Luckily the cancer returned and was stage 4. Did some treatments just for the show. Quit the treatments and now I let the cancer to finish the job. My stupid doctors don't understand and are gaslighting me.
My parents still think I got the treatments and they still think (hope) I can be cured lol.

you have to do what is right for you. Stage 4 is incurable from how i understand. My Mother had lymphoma for nearly 10 Years but the disease was treatable with chemo. She had a reasonable quality of life but had many secondary symptoms. I wish you peace whichever way you decide.

 

[Rounded Apathy]

I'm a terminal cancer patient. My life was perfect before the cancer diagnosis.
Did the cancer treatments which destroyed my life. Cancer was gone but I felt miserable. Luckily the cancer returned and was stage 4. Did some treatments just for the show. Quit the treatments and now I let the cancer to finish the job. My stupid doctors don't understand and are gaslighting me.
My parents still think I got the treatments and they still think (hope) I can be cured lol.

I'm sorry. I hate how modern western medicine has somehow created this twisted dualistic mythos that it can simultaneously fix everything, if you do everything you're "supposed" to, but when the things they told you to do don't work you should still keep doing all you can. I read an article once about palliative care some place in America or Canada that was trying to reintegrate an understanding of the inevitability of death. It's hard because there is so much less profit in that; no big pharma throwing pills at this, biotech machinery for that, or whatever other thing.

We have this twisted general view (at least in certain nations and societies) that life must be extended as long as possible at whatever cost. As I write this, I am wondering more and more how much the corporate medical industry has driven this view...I hope whatever you face from here on out is manageable for you.

 

[Sky66]

I'm sorry. I hate how modern western medicine has somehow created this twisted dualistic mythos that it can simultaneously fix everything, if you do everything you're "supposed" to, but when the things they told you to do don't work you should still keep doing all you can. I read an article once about palliative care some place in America or Canada that was trying to reintegrate an understanding of the inevitability of death. It's hard because there is so much less profit in that; no big pharma throwing pills at this, biotech machinery for that, or whatever other thing.

We have this twisted general view (at least in certain nations and societies) that life must be extended as long as possible at whatever cost. As I write this, I am wondering more and more how much the corporate medical industry has driven this view...I hope whatever you face from here on out is manageable for you.

Modern medicine is a joke. They only care about survival rates and statistics. Qof and crippling patients is not their concern. The end justifies the means is what they are thinking I guess. They are still pushing me for treatments, they can stick the treatments into their *****.

 

[whitefeather]

This is a Megathread where members who are suffering with a terminal illness can post their experiences, vent, connect with others in a similar situation and give/receive support.

You can post as often or as infrequently as you like. Share as much or as little as you feel comfortable with.

I will monitor this thread to ensure it stays on topic and is a safe, supportive space for those who participate.

 

[whitefeather]

Expectations During The Holidays

Expectations During The Holidays

whitneydafoe.com