Please describe end-stage cancer for me (warning - death, dying triggers)

[Cascadian]

Hi everyone - just a year after my BIL was dxd with Stage 4 lung cancer, he was just given under 6 weeks left to live. He's in the hospital on maximum pain killers and nerve blockers as it metasticized everywhere.

For anyone who has been through the last final weeks of cancer with a loved one, could you please help me through what to expect, so that I could support my DH?

TIA

[babygrant]

No advice, just many many hugs!

[SweetSurrender]

I'm sorry, I haven't been through that either but I hope someone that knows can offer some help. Just want to give hugs as your family deals with this difficult time.

[blessedwithboys]

Do you want to know what the patient experiences? For my father, who had lymphoma, it was very quick. His cancer spread to his brain stem and he slipped in and out of coma for the last week or two. We did our best to make sure he didn't suffer by offering excellent palliative care.

Honestly, I think the whole process was harder on my dad's little sister than it was on him. He was unresponsive to stimuli but she was a complete wreck.

I'm not sure what else you're looking for, info wise, but feel free to post specific questions, and I'll answer them as best I can.

[GoBecGo]

For my mother (adenocarcinoma of the cervix) she was relatively "fine" - mobile etc. with 3 large tumours, one in her chest, one where her right kidney used to be and one attached to the back of her bladder. The one in her pelvis grew rather suddenly (i.e. one morning) through a major vein and she bled to death internally over the following 18 hours. She was in a hospice already (she'd gone in for a few days respite so she and my dad could get space from one another) and they kept her morphine high enough that she wasn't in pain. She was completely conscious though slurred (from morphine) at 1am, became disorientated at 4am, then fell unconscious, and died just after 8am. I can give more detail if you want it. Be specific and i'll be specific back

[Cascadian]

Thank everyone.

Yes, I'm looking to know what the patient experiences. When I googled, these questions were met by people basically saying "Don't focus on death - have hope!" which is great, but not very useful.

The cancer is now rapidly growing and is in his brain and bones. My DH just left to the hospital as BIL started seizing from a powerful numbing painkiller they were trying to put into his shoulder to stop the bone pain.

He's becoming confused and has myoclonic twitching. He's on methodone which is even not working (the morphine stopped working).

What I'm looking for is basically what could happen, what does it look like. More conscious pain? Coma? Hallucinations? Hemmorage?

[GoBecGo]

Well my mother didn't have any growths in her brain, which was a blessing, but she did become disorientated before slipping into her final unconsciousness. I won't mince words, she screamed for her mother and fell out of bed. BUT she really seemed "gone" already by then, like it was the part of her "self" in her brain stem having one last-ditch effort at staying alive, yk? They upped her morphine, tucked her back into bed. Her breathing became very loud and laboured, with loud gasping in and what sounded like (but i know wasn't) agonised moaning out. I held her hand throughout several hours of that though, and i could feel there was no tension in her body, i nursed her on and off for 7 years and i know she wasn't hurting in those hours. That breathing got quieter and slower as the hours went on until eventually there was one breath every few minutes and eventually there hadn't been one for about 5 minutes and we realised there was going to be no more.

I'm sorry i can't give a prettier story. If it's worth anything i was extremely privileged to be with my mother when she left us. A bit like a difficult birth - it wasn't always easy to look at, but it felt Important to witness/help with and ultimately she was out of pain and at peace. It was one of the hardest and most worthwhile things i've ever done.

[Cascadian]

Gobecgo - Thank you.

[Dar]

My mother died of anaplastic thyroid cancer. Her pain was fairly well controlled throughout her last days - she may have had some pain, but it was managable. She did become more and more confused, I think probably due in part to the painkillers and in part to... dying, I guess. The process of dying.

She got angry and swore once or twice during the last few days of her life, which shocked us, because she wasn't that kind of person. That was hard... and she didn't seem to be angry at us, but we couldn't really tell what she was angry at. During that period she was sort of fading in and out of consciousness, and we were never sure how lucid she was. Sometimes she seemed to know us, and sometimes she didn't. By the end she couldn't communicate much at all - a few words, maybe, or a gesture or two.

At the end she slipped into a coma, and the next day she died.

Have you spken with hospice? The end came fairly quickly for my mom - she started to deteriorate on Friday, was hospitalized Sunday, and died Tuesday morning. We had planned to bring her home and use hospice serviced, though, if she hadn't died so suddenly. REally, they're very good at helping people through this transition, both the dying person and his family.

I'll be thinking of your family.

[Cascadian]

Thank you Dar.

The docs said that the hospital is the best place at the moment as they are still trying to control the neuropathic pain. I mentioned a hospice to my DH (as he's the one doing most of the planning) - I think it's the best place for him at the end, but it would be up to DH and the docs...

[LaLaLaLa]

My mother-in-law died of cancer (breast to lung to brain) almost three years ago. Toward the end her migraines were so bad that they did a last-ditch brain surgery, which was the beginning of the end.

In her last month of life, she didn't seem to recognize us, although her husband insisted that she was completely coherent. She slipped into a coma (her husband said she was "sleeping a lot") and went on huge amounts of pain medication. I don't think she could feel anything at all. She certainly didn't display any signs of the pain she'd been in for so long before that.

Can you afford hospice care? My mother-in-law spent her last week in a hospice house, and it was truly wonderful. The staff was quietly reassuring and calm, the facilities were much nicer than a hospital, and it was a very pleasant place to visit and a very pleasant place to die. Much of the family spent a great deal of time there, and the staff and volunteers brought us coffee and water, pulled out craft supplies for the kids to play with, and didn't try to rush us out when we were there at all hours of the night.

I'm so sorry; I can't think of many things more awful than a lingering battle with cancer. It was a really terrible time for all of us, especially for DH.

[GardenStream]

My dad died 6 months ago from lung cancer which has metasticized to his brain, bones, thyroid, and that's basically when we gave up on looking anywyere else. He made it 4 months from the day he was diagnosed with cancer until the day he died. It was a very long process of testing and retesting just to find out exactly what he had. He got weak very quickly (within 4 weeks or so). He spent a lot of time in the hospital getting tests and fighting a blood infection. He was using a walker to go to the bathroom on his own up until a few weeks before he died. After that he went downhill very fast and couldn't get out of bed on his own. He was 100% aware of his surroundings until 2 or 3 days before he died. He also had 2 heart attacks in the last week.

Basically once we found out that it was in the brain and bones, we were told there would be no more treatment. My Dad only lived a week or two after that news. It was extremely hard to watch him go through it. He lost about 75 pounds in those 4 months. The only blessing he had in all of it was that he never experienced any pain.

Hospice was very helpful, but we had one run in with them. We had one instance where a nurse told us to give him a lethal dose of morphine during the first heart attack. Obviously, she didn't know that my sister is a nurse and I'm a pharmaceutical toxicologist. My sister informed the hospice nurse that we weren't ready to murder him yet. Dad was still having a lot of trouble working through the acceptance of dying and saying goodbye to people. We never heard from that nurse again. Most of the people with hospice were wonderful, but my advice would be: Don't trust that everything they tell you is correct, you really have to be informed and prepared to fight for your loved one to get the best care.

[GoBecGo]

atobols i'm so sorry! I'm in the UK, so our hospice was free (though they need £5000/day in charity donations to actually stay open, they don't ask patients for any of that) and really extremely wonderful. There was something incredibly peaceful about being around staff who cared for those who were approaching and experiencing death rather than those who ordinarily help people remain alive. There was no fuss, no fight, no machines bar the morphine pump (and that was in a knitted woolly case on the bed with her, not hung up or on a wheeled stand). Having said that i am sure morphine contributed heavily to my mothers death, since they were running an iv when her blood volume was getting smaller and smaller and smaller. Then again i think the pain without it would have meant panic which in her case would have hastened death but been more distressing for us all.

We did not tell my mother death was imminent. She was a nurse, she knew the deal, but we didn't feel a deathbed drama of actually talking about it was worthwhile. She held my hand tight and told me she'd come help me in my garden when she could, when we both knew and had discussed that she would die soon-ish, so i know she wasn't talking about "getting better".

[Cascadian]

Lalala - Thank you for sharing your story. In Canada, hospice care is subsidized and I really hope that he ends up there. The hospitals are so sterile and takes a lot out of DH, MIL and FIL when they visit as there are no comfort amenities or volunteers with their mental health in mind.

Atobols - Thank you as well. Thank you also for the heads' up with the morphine - I've heard similar stories of that happening.

Here is a dilemma: should we tell BIL the time frame or not? I mean, it truly isn't carved in stone, but it is highly likely that the doctors are accurate with the <6 week timeframe. More harm than good, or a chance to get organized and mentally prepared?

[GoBecGo]

Originally Posted by Cascadian

Here is a dilemma: should we tell BIL the time frame or not? I mean, it truly isn't carved in stone, but it is highly likely that the doctors are accurate with the <6 week timeframe. More harm than good, or a chance to get organized and mentally prepared?

That depends so much on him and on the rest of the family. For US, there were 2 family members in particular who would have wanted to have a hand-wringing death-bed drama, for THEMSELVES, not for mum, and we wanted to shield her from that. They aren't bad people, and they were with her at the end and everything, but she only had a few hours left, we didn't want her having to spend them making other people feel better. On the other hand, it's ok to tell him the things you want him to know NOW, without telling him how long he has if you decide not to.

Diagnosis is so tricky IRT "how long". My mother was given 6-12months at diagnosis and died 6 years and 11 months later. In her final weeks she was told 3months, 6 weeks, 3months, one month, 3months, 24 hours. Only at the VERY end did they get it right.

[sbgrace]

My grandmother died of lung cancer that had spread everywhere. I lived with my grandparents at the time and was there when she died. In her case she was largely unconcious in the final days--slipping in and out at times but at the end even her "in" times were disoriented and childlike almost. She did not appear to be in pain for the most part but, again, she was mostly not "there" as I remember. At the very end her breathing slowed very much as the previous poster mentioned. She seemed asleep. The very last moment she gasped almost (not a full gasp though but a stronger breath that was sudden--it is hard to explain) and opened her eyes that had been closed as she looked up. It was peaceful honestly and yet terribly sad to watch my grandfather hold her. Still makes me cry but it was him that makes me cry and not her experience.

That said, my mother was for most of my life a hospice social worker. I think the way people die varies both with the type of cancer, where it has spread, pain, the ultimate causes of the death (ie seizures or heart stops, or the person struggles to breath would all look different), life experiences and beliefs even can influence. Hospice can be a wonderful resource both in preparing the family and him for death so I hope that works out for your family and I so hope they are able to manage his pain. At a human level I think an adult deserves to know they don't have much time left even in particulars of the expectations but I don't know all the ins and outs of your loved one and how that might emotionally impact him of course. I imagine a hospice social worker might have some thoughts for your particular situation.

I'm sorry.

[Traceround]

I was with my grandfather as he died of lung cancer when I was a teenager. He went through specific stages as his body was dying and the hospital and eventually hospice provided us with information about the dying process as it looks from observation.

Two weeks before he died he was still very coherant but in a lot of pain. He couldn't spend much time up. We had a family party for my grandparents 50th wedding anniversary. He was able to be up and socialize and for that, I am forever grateful.

The final week leading into the final day, he slept a lot (or was in and out of a coma, we don't actually know). When he was awake, he told us stories of things he had done as a young man.

The final days, he spoke to people who weren't physically there. He had long conversations with his brother who had passed 20 years prior but didn't recognize his wife.

His breathing changed the last day. It was slower and gaspy. The hospice workers referred to this as the "fish out of water" breathing.

I sensed that it was the end and my mother, grandmother, and I spent the day with him (we had hospice care in my mothers house for him). We just sat there and talked and told him over and over again how much we loved him.

I sat on the bed and held his hands. My mother told him that it was okay and that we would be fine and it was okay for him to go. He opened his eyes right about then. Looked at all of us. Closed his eyes with a sigh and then he was gone.

It was peaceful. We felt blessed that after such a horrible illness, he had such a peaceful passing.

I would speak to a hospital social worker about your concerns. This is their job and they will be more than happy to help your family at this time.

You will be in my thoughts.

[GardenStream]

I want to clarify that I am not against hospice. It's a wonderful service, but there are a few that don't have a clear picture of what is going on. My Dad was fairly young when he died (63) and had led a very healthy and good life. He was absolutely shocked that he got lung cancer becasue he had never smoked.

His cancer fight lasted 4 months. The first 3 months were spent looking into treatment options and we all had hope. The last month was when we were basically told that there was no treatment for him. He was dealing with a lot of emotions (anger, depression, fear, overwhelmed really). He was scrambling to get his financial affairs in order. There was so much going on at that point. A couple of the hospice workers made a lot of assumptions about my Dad and his situation. He was not ready and had not accepted his fate at the time one hospice nurse instructed us to give the lethal dose. The best nurses would go in and talk to my
Dad. He was coherent and he needed them to understand him and what he was going through.

[blessedwithboys]

OP, I'm going to PM you in a bit (need to gather my thoughts). I'm going to be 100% honest, so feel free to not open the PM if you aren't in the right frame of mind for it. (((hugs)))

[GardenStream]

Originally Posted by Cascadian

What I'm looking for is basically what could happen, what does it look like. More conscious pain? Coma? Hallucinations? Hemmorage?

I don't know anything about pain, but I can tell you my experiences with death. I've watched my Father, FIL and my Grandmother go. My Dad and Grandmother I was actually *there* to see the last moments. They all started to sleep a lot. Two of them were coherent during their awake times until the end. My FIL had hallucinations, but he did have Alzheimer. My FIL and Dad were unresponsive for 24 hours before they passed. My GM getting up and moving within 12 hours of her death. For all of them, the biggest indicator was blood pressure. When there was a sharp decline, that was a sign it was coming quickly. With my Dad, it got to the point where they could no longer measure it. They all died within 24-48 hours of the blood pressure drop.

Originally Posted by Cascadian

Here is a dilemma: should we tell BIL the time frame or not? I mean, it truly isn't carved in stone, but it is highly likely that the doctors are accurate with the <6 week timeframe. More harm than good, or a chance to get organized and mentally prepared?

That's hard! Is he aware of what is happening? Do you think a part of him already knows that this is the end? Does he need to prepare financially for his death? Are there people he really needs to say goodbye to, but hasn't because there is still time? Is your BIL religious or would he be comforted by meeting with a spiritual adviser? My Dad hadn't been a practicing Catholic since his childhood, but meeting with a priest and having them do the last rights thing was important to him, which came as a shock to us .

Sorry, had to take a little break and walk away from the computer for a while.

It's such a tough time emotionally and physically for everyone. Emotions run really high. For us, there was a lot of laughing, crying, and silence.