WWYD? Update!

[Pea-n-Me]

Having gone through a serious case of cancer myself, as well as having spent a whole career taking care of critically ill and often dying patients, this, to me, is one of the hardest things to have to live through, mostly due to having to say goodbye to loved ones, knowing you are leaving them, and fearing the death process itself (with putting affairs in order pulling up the rear - sometimes not much time or opportunity to do even that, depending on the circumstances).

I actually spend a LOT of time talking to my patients who find themselves in this situation. Oftentimes they want to be strong for their family and loved ones, but let down their emotions after they leave, if the caregiver is open to it. (And not all are.) I pull up a chair or sit on the bed, so they know I'm interested, and try not to be rushed, and let them lead the conversation, see where they're going with it, try to ascertain what it is they are concerned about most, then offer whatever bits of wisdom I have if they want to hear what I have to say. (And they almost always do.) We have certainly had some very interesting conversations, that's for sure. (And they're just as meaningful to me and my life, as they are to those patients.)

Personally, I don't believe we have much to fear from the death process itself, other than pain and suffering, and hopefully the person who's dying will be fortunate enough to have people around them help ease their suffering, no matter what. (Comfort, being the highest priority.) If that's taken care of, then the other things are what's left, though those can be tremendously difficult.

Some believe there is more to come after death, and that can be a great comfort to someone who's dying.

Personally, I've had some loved ones die suddenly, and while that's got its own difficulties, I do think it's probably the easier way to go, at least to me.

 

[lorijohnhill]

I would rather just wake up dead. I have about anxiety disorder, so if I knew ahead of time, I would be stressing over every little thing. There would be no quality of life.

If I was told ahead of time, I would not tell anyone. I don't want those few that actually care about me to suffer through it, and I most certainly would not want those who come out of the woodwork to start hanging around and acting supportive.

As for those I care about, I would not want them to suffer. I'd prefer they go fast and be free of suffering and pain.

 

[gillep]

My MIL passed from pancreatic cancer about 5 years ago. She lived for approximately 11 months following her diagnosis. She had a couple OK months, and was even able to take a vacation with the family. Soon thereafter she started experiencing complication after complication and went downhill very fast, then plateaued in that very ill state. I would not wish her suffering on anyone. My father one day was rushed to the ER in extreme pain, he was put in a medically induced coma, and passed about a month later. It was very difficult that he passed so suddenly, i was not even able to speak to him as I did not want him to be in pain by taking him out of the coma, but I am thankful that he did not suffer in the way my MIL did. I am so sorry for your friend.

 

[ronandannette]

...I actually spend a LOT of time talking to my patients who find themselves in this situation. Oftentimes they want to be strong for their family and loved ones, but let down their emotions after they leave, if the caregiver is open to it. (And not all are.) I pull up a chair or sit on the bed, so they know I'm interested, and try not to be rushed, and let them lead the conversation, see where they're going with it, try to ascertain what it is they are concerned about most, then offer whatever bits of wisdom I have if they want to hear what I have to say. (And they almost always do.) We have certainly had some very interesting conversations, that's for sure. (And they're just as meaningful to me and my life, as they are to those patients.)...

End-of-life care in general and hospice in specific is a sacred calling. I have nothing but high-praise and gratitude for anyone involved.

I would rather just wake up dead. I have about anxiety disorder, so if I knew ahead of time, I would be stressing over every little thing. There would be no quality of life.

If I was told ahead of time, I would not tell anyone. I don't want those few that actually care about me to suffer through it, and I most certainly would not want those who come out of the woodwork to start hanging around and acting supportive.

As for those I care about, I would not want them to suffer. I'd prefer they go fast and be free of suffering and pain.

That's quite a jarring way to put it. I'm taken aback. In our situation there are hordes of us standing by waiting to see what what we can do to be of service. If it turns out that the best we can offer is to back off and give them space we certainly will but it would be painful to hear that our best intentions are reviled.

 

[lorijohnhill]

End-of-life care in general and hospice in specific is a sacred calling. I have nothing but high-praise and gratitude for anyone involved.

That's quite a jarring way to put it. I'm taken aback. In our situation there are hordes of us standing by waiting to see what what we can do to be of service. If it turns out that the best we can offer is to back off and give them space we certainly will but it would be painful to hear that our best intentions are reviled.

I apologize. I did not mean to offend. I just seem to know quite a few people who are not there for others during normal times, (ie: no calling to say hi, no ""let's go to lunch"", no "hey, such and such happened. What should I do." Basic friendship stuff. Some barely even say hello when they see you. But then an illness happens and they act like they are your best friend in front of other people. Like a "See what a great person I am!" kind of thing.

That is what I was talking about. Not your situation at all.

 

[ronandannette]

I apologize. I did not mean to offend. I just seem to know quite a few people who are not there for others during normal times, (ie: no calling to say hi, no ""let's go to lunch"", no "hey, such and such happened. What should I do." Basic friendship stuff. Some barely even say hello when they see you. But then an illness happens and they act like they are your best friend in front of other people. Like a "See what a great person I am!" kind of thing.

That is what I was talking about. Not your situation at all.

I appreciate you clarifying your thoughts - I did understand it a different way than you meant it. I wasn't offended, just alarmed a little. I hope you do have lots of real friends and loving family members in your life when and if you ever need them.

 

[lovin'fl]

I apologize. I did not mean to offend. I just seem to know quite a few people who are not there for others during normal times, (ie: no calling to say hi, no ""let's go to lunch"", no "hey, such and such happened. What should I do." Basic friendship stuff. Some barely even say hello when they see you. But then an illness happens and they act like they are your best friend in front of other people. Like a "See what a great person I am!" kind of thing.

That is what I was talking about. Not your situation at all.

Though in my recent experience, with MIL battling cancer and my mom having double knee replacement, it's the folks they haven't seen much of that have been there for them. The folks they went places with and spent time with regularly, disappeared. It's really hit my MIL...on who she thought she was tight with, maybe she isn't so tight with.

 

[Pea-n-Me]

Timely article: http://www.dailymail.co.uk/health/a...GTON-GILKS-wish-Id-known-lost-son-cancer.html

 

[marcyleecorgan]

IMHO .... I go with sudden and unexpected. Yes it is sad, but you deal with the funerary services, you get the estate dealt with, everyone deals with their own closure. The loved one is dead and not getting any deader, and the estate/will says what it says, or it goes to probate, it's all very legal and non-emotional.

If they linger and need medical treatments, you have to fight as their advocate ALL THE TIME, you have to argue with insurance companies and doctors and deal with the bureau-crazy paperwork (even in Canada, our free healthcare doesn't cover everything, you have to have a second carrier if you don't want to pay OOP).... not to mention the loved one suffers because they don't want people to see them in the vulnerable state they are in. And you have up's and down's and a real spectrum of quality of life.

Your whole life becomes an epic, amplified seemingly never-ending tragedy. Then you get to argue endlessly with other family members about everything, from the hospice nurses to warm socks vs room temperature socks, to who is sitting with Grandma tonight... and then everyone gets manipulative about the will/estate/inheritance. And a large part of your memory is all the DRAMA you had to have before the loved one passed.

 

[AnnaFloridaLover]

My aunt was a nurse for more than 40 years and has seen it all. She likes to say that when it's her time to go she hopes she's pulling out of her driveway (which is off a highway) and is hit by an 18 wheeler. I hope it's equally quick when it's my time.

 

[Music City Mama]

I've been thinking about this a lot lately. My mom passed away very recently from pancreatic cancer, about 2 months after being diagnosed. When she was diagnosed, her only symptom was jaundice, and she felt fine as far as appetite, etc. Then the appetite started to go and and she went downhill pretty quickly. She had in-home hospice care (but only needed it 2-3 times per week) the last 3 weeks of her life. She never really was in any pain (discomfort from the stent draining the bilirubin, but not actual pain), but because she wasn't on any heavy duty pain meds, she was completely aware of what was happening to her...

While they initially thought it was isolated to the head of the pancreas and that they could perform surgery and then chemo, they discovered that it had in fact spread. Once they got her bilirubin down enough, they were going to attempt a mild form of chemo (although, we were aware that would probably only buy her a few months), but because she wasn't eating, even though her bilirubin levels had come down a lot, that just wasn't in the cards for her.

They live very close to the Gulf, and I remember thinking that if I lived there, I'd want to spend at least one last time at the beach, see the sunset, etc. However, she never really wanted to leave her house. She wanted to be at home all of the time -- that's what gave her comfort. Not what I'd imagine for myself in that situation, but everybody is so different.

My brother died very suddenly when he was 42, and that was harder for me -- I had no time to process it. I think as others have said, it's better for the person dying if they go suddenly without knowing, but for the loved ones, you want to have that time. It's tough no matter what.

 

[low-key]

The only advantage you have to knowing you just have a short time to live is you could get your affairs in order. It shard on everyone but in the end we all just want the truth

 

[ronandannette]

I've been thinking about this a lot lately. My mom passed away very recently from pancreatic cancer, about 2 months after being diagnosed. When she was diagnosed, her only symptom was jaundice, and she felt fine as far as appetite, etc. Then the appetite started to go and and she went downhill pretty quickly. She had in-home hospice care (but only needed it 2-3 times per week) the last 3 weeks of her life. She never really was in any pain (discomfort from the stent draining the bilirubin, but not actual pain), but because she wasn't on any heavy duty pain meds, she was completely aware of what was happening to her...

While they initially thought it was isolated to the head of the pancreas and that they could perform surgery and then chemo, they discovered that it had in fact spread. Once they got her bilirubin down enough, they were going to attempt a mild form of chemo (although, we were aware that would probably only buy her a few months), but because she wasn't eating, even though her bilirubin levels had come down a lot, that just wasn't in the cards for her.

They live very close to the Gulf, and I remember thinking that if I lived there, I'd want to spend at least one last time at the beach, see the sunset, etc. However, she never really wanted to leave her house. She wanted to be at home all of the time -- that's what gave her comfort. Not what I'd imagine for myself in that situation, but everybody is so different.

My brother died very suddenly when he was 42, and that was harder for me -- I had no time to process it. I think as others have said, it's better for the person dying if they go suddenly without knowing, but for the loved ones, you want to have that time. It's tough no matter what.

What an insidious killer this particular cancer is. Your mother’s case sounds very similar to our friend’s and from what I’ve learned, it’s an extremely common course of events. We saw him again today and honestly, he’s fine and totally functional physically. It’s mind-bending to believe he’s been given a 6 week life expectancy.

 

[Music City Mama]

What an insidious killer this particular cancer is. Your mother’s case sounds very similar to our friend’s and from what I’ve learned, it’s an extremely common course of events. We saw him again today and honestly, he’s fine and totally functional physically. It’s mind-bending to believe he’s been given a 6 week life expectancy.

How is your friend doing?

 

[ronandannette]

How is your friend doing?

Thanks for asking - this is such a heavy burden on our hearts and we're all on pins-and-needles. Firstly, he and his family are being held in constant prayer by countless people all over the world and that is sustaining them in amazing ways.

I'm not sure how much you know about the Canadian medical system, but due to the way it works, even the most dire cases face waits for diagnostic procedures and treatments that you might find mind-bending. After his initial diagnosis he needed an MRI to determine the exact progression and from the time of my first post, it's taken until yesterday to get the results of that. His tumor is in the "tail" of the pancreas, which is rarer and produces far fewer symptoms that other kinds. The cancer has metastasized throughout his entire liver (innumerable is the word they used to describe the tumors there) and one lung. There are no viable treatment options other than comfort measures, which blessedly, are abundantly available through our superb network of palliative care facilities. Liver failure is imminent - like hold your breath, any second now - imminent, and once that kicks in his life-expectancy is days, or weeks at most. At this time he is still basically asymptomatic, which is a marvel and a surprise to the doctors.

While waiting for oncological care they have been consulting complementary medicine practitioners, something that's readily available here on a pay-as-you-go basis. I know very little about it (as do most of us in North America) but there are apparently many cancer-care protocols widely practiced in Europe that hold some promise. He has been accepted into a treatment program at (what is apparently) a prestigious clinic in Vienna, if they can make it there and come up with the funds. It's a tough, tough decision for them and honestly, I don't know what I'd do if it were me.

In the meantime, we're all rallied around providing whatever practical help we can, trying to figure out how to "be" with him - how to act, what to say, how to keep focus on the fact that he's not dead yet, even though we all began grieving 2 weeks ago. Again, thanks for asking - this may be more of an update than you were interested in, but processing it like this has been cathartic.

 

[jaybirdsmommy]

I have dealt with both. Fast and unexpected, although horrible for the survivors, is my preferred way to go.


My grandfather went to dinner with my parents one night, drove himself home, and died in his easy chair in front of the tv. They found him the next day.

My father had cancer and spent about 6 months from diagnosis to death. It was not something I would wish on anyone.

 

[rodeo65]

It's coming up on the anniversary of my late husband's diagnosis. He suffered for months, starting before the diagnosis. A lot of people think they'll , but in reality, they can't get out of bed and/or are not lucid. It's not pretty.

Having just dealt with this horror, I can say that was definitely true in our case. My husband was 35 days from diagnosis to his passing and while he did have some symptoms prior to diagnosis, it was like a switch was flipped on March 14 and he became wholly immersed in the disease process. He was bedridden from that point on and declined so quickly that any "getting his affairs in order" was basically just a brief conversation and then me trying to make sure everything we'd discussed happened.

End-of-life care in general and hospice in specific is a sacred calling. I have nothing but high-praise and gratitude for anyone involved.

That's quite a jarring way to put it. I'm taken aback. In our situation there are hordes of us standing by waiting to see what what we can do to be of service. If it turns out that the best we can offer is to back off and give them space we certainly will but it would be painful to hear that our best intentions are reviled.

I completely agree with the bolded. The Palliative NP we had helping guide us in the hospital and the team at the hospice were our foundation through those weeks. Definitely for me and I hope and believe for whenever I wasn't there. I don't think my husband ever really recovered from the shock of what had happened and really never had any of those conversations I think most people might like to have when death is imminent.

For us, visits unfortunately were very few and I don't believe he enjoyed them really. He was too uncomfortable and too stricken with the physical changes he was dealing with to be "happy to see" anyone. Even with me he was short and mostly focused inwards on what he was going through. I think you just take your cues from your friend and his family. I'm sure every patient and situation is different, so our experience is only one story.

I hope if I were faced with a similar diagnosis, there would be time to spend with loved ones and I'd be well enough to enjoy those remaining moments. I still think with all that we went through in such a short time, my preference would actually be what happened with my DH. Knowledge with a small amount of time to "finish" important things and have conversations I'd want to have, but not years of suffering and decline.

 

[AnnaS]

I have lost my parents, in-laws, my sister, two brother-in-laws (DH two brothers) and a very very dear close friend. All in a very short/back to back time. I have seen both and always say, neither one is easy. If I had to choose, not sure what I would prefer. Sad for everyone involved.

Will keep you all in my prayers.

 

[Pea-n-Me]

Thanks for asking - this is such a heavy burden on our hearts and we're all on pins-and-needles. Firstly, he and his family are being held in constant prayer by countless people all over the world and that is sustaining them in amazing ways.

I'm not sure how much you know about the Canadian medical system, but due to the way it works, even the most dire cases face waits for diagnostic procedures and treatments that you might find mind-bending. After his initial diagnosis he needed an MRI to determine the exact progression and from the time of my first post, it's taken until yesterday to get the results of that. His tumor is in the "tail" of the pancreas, which is rarer and produces far fewer symptoms that other kinds. The cancer has metastasized throughout his entire liver (innumerable is the word they used to describe the tumors there) and one lung. There are no viable treatment options other than comfort measures, which blessedly, are abundantly available through our superb network of palliative care facilities. Liver failure is imminent - like hold your breath, any second now - imminent, and once that kicks in his life-expectancy is days, or weeks at most. At this time he is still basically asymptomatic, which is a marvel and a surprise to the doctors.

While waiting for oncological care they have been consulting complementary medicine practitioners, something that's readily available here on a pay-as-you-go basis. I know very little about it (as do most of us in North America) but there are apparently many cancer-care protocols widely practiced in Europe that hold some promise. He has been accepted into a treatment program at (what is apparently) a prestigious clinic in Vienna, if they can make it there and come up with the funds. It's a tough, tough decision for them and honestly, I don't know what I'd do if it were me.

In the meantime, we're all rallied around providing whatever practical help we can, trying to figure out how to "be" with him - how to act, what to say, how to keep focus on the fact that he's not dead yet, even though we all began grieving 2 weeks ago. Again, thanks for asking - this may be more of an update than you were interested in, but processing it like this has been cathartic.

Do you mean Alternative? Complimentary usually means practices in addition to traditional medicine. Alternative means a different type, oftentimes controversial. Going to Vienna sounds like Alternative. And I don't blame him if he's not being given any hope and that's the road he wishes to pursue. It would be nice to have a crystal ball, but none of us do. He may have a hard time believing this is happening if he doesn't feel sick. Ultimately it's up to every individual how they want to handle it. I continue to pray for him. Thanks for the update.

 

[Pea-n-Me]

Meant to say, too, I have also had a lot of unexpected deaths recently of either people close to me or family members of people close to me. All fairly young. It's left me sort of reeling a bit. Life is so fleeting.