Advice Needed- Dealing with a looming death

[OakLeaf]

oh man. No advice, but hugs and prayers for you, your DH and all concerned.

[Possegal]

Man I wish I had an answer for you. I've said on here more than a few times, my eldest sister is battling lung cancer right now. She is stage 3b non-small cell. This means that she has had lymph nodes in the middle of the chest, on the opposite side of the tumor, test positive for cancer. She has no metastases outside the chest at this point, so treatment although unlikely to be curative, is to keep the tumor in check and hope it doesn't escape out of the chest. Lung cancer likes to go primarily to the bones, the adrenal gland, the liver or the brain. So every scan I hold my breath as I read the reports and look for something in any of those areas.

I work in the field, so I am all too aware of the odds and the numbers. When she first met the oncologist, he told her that her stage of NSCLC has a median survival of 22 months. That basically says that at 22 months, half the people with her stage and type of cancer will be dead. We are at 13 mnths now. Those first few weeks were very tough on her and everyone in the family. Now, I guess you could say we have fallen into a groove of living 3 months to 3 months (when they scan to look for disease progression), hoping for the best but always remembering what we are dealing with. A good scan, I say OK, we have 3 months, what should we do? She's going on a long weekend trip this week with my brother in law. She's got a few things on her "bucket list" that I'm trying to arrange for her. She is going to be at the finish line of the Livestrong Challenge this year, which my family and I ride in her honor. I never thought last year that that would be the case, but she's fighting hard and doing pretty well, so she plans to cheer us on!

I can tell you from my experience, one thing you have to do is let the person 'get their life in order'. Don't do what I think most folks want to do, which is say "oh don't talk like that" and try and avoid it. It is sad and painful and so terribly difficult, but I always let my sister talk about the end. I've promised her I will make sure her family gets through it, I will make sure she doesn't suffer, I will do whatever she needs me to do and I let her talk about all those things. We don't dwell, but it isn't far from our minds.

I told her the first week she was diagnosed that she should live each day like she doesn't have many, while we fight with everything she, I and modern medicine have to get her more time. It becomes all about buying more time.

Not sure if that helps much, but I do feel your pain. I always figure that either way of dying (unexpected or drawn out terminal illness) have their pros and cons. The pro of this type of death is that you have no reason to have anything left unsaid. It is a small gift compared of the pain of watching someone battle for time, but try and take advantage of it.

Good luck and prayers to you and your family.

[Flybye]

SO Sorry to hear about your situation.

There are some good resources at this link:

http://www.hospicenet.org/

Also, at this time of year there are a lot of benefit rides, walks, and fun runs. Would it help to do one in each of their honor?

Rent all of the funny videos that you can. Celebrate the last of their lives with them. It sometimes seems so unfair that life keeps moving on while someone is dying or after someone has died. I think that would be the most difficult thing to deal with as a terminally ill person. Sorry, wish I could help more.

[Tuckervill]

I love Possegals advice. Don't avoid talking about it.

My dad's twin had cancer the last 3-4 years of her life. I never got to see her much before that, but those last few years were great. She was very up front about it. We helped her write her obituary at one family gathering. It wasn't sad at all.

I learned one thing about this kind of thing while my son was in Iraq. I was so devastated by it all. It's a little different than an impending death, because I truly was not the victim--but I felt like one. And because I felt like the victim (a mother facing the possible loss of her child), I really was not capable of taking care of other's emotional needs around the issue. I couldn't stand to be around my mother, who was also a basket case about it. I needed her to care for me, not ook out her stuff on me. I only wanted to be around people who were there for me. It sounds really selfish, and maybe it was, but I needed that space for myself.

So I would say don't go around all teary-eyed in their presence, and don't be over-solicitous towards them. Treat it as a fact, and let them lead you. Smile, be yourself. Be real.

Karen

[Irulan]

How do you deal with death when it is hanging in the room, just mocking you? His grandfather had cancer but we didn't get to see him after he went to hospice, it took him in a quick couple of weeks not months. My only experience with death has been unexpected (heart attacks, accidents and murder) I do not know how to help him with knowing it is coming.

Perhaps a change of attitude ? Instead of "death mocking you" perhaps embracing the idea that every one dies at some point, and that it IS inevitable? Work with the family, as stated, to get affairs in order and to celebrate the life that has been lived. Death doesn't have to be a horrible finale, it can be another ( big) step on the road of life.

I.

[Geonz]

When my father's cancer came back after a 16 year remission, he made a video. ONe line from it really stands out: "The best way to die joyfully is to live joyfully." People honestly did drop by to cheer themselves up. With my mother it was more difficult; she didn't want to leave without some things taken care of. We talked about them and in the last week frequently gave her permission to leave us and told her hte things we'd be sure to take care of.
We are all going to die. Death is here... regardless. It's kinda like that huge hill on a bike ride - the more you look up the harder it is; if you keep the pedals moving and shift gears at the right time, you'll get through it.

[sundial]

Just......listen.

Wouldn't it be nice to reminisce with them while you both can enjoy laughter and tears? I think in a way it's a blessing to be able to spend moments together because with time being precious, it helps put things into perspective. I often learn more about living through dying.

Perhaps you can have a special gathering of friends and family who would like to share their favorite stories and events they shared with your aunt or step-mother. And as they make their final preparations, wouldn't you like to be a part of something that could be personalized to their tastes? Perhaps your aunt would like people to wear a certain color blouse to the funeral. Or maybe your step-mother would enjoy a contribution made in memory of her generosity.

I'm very sorry you are having to face losing 2 special people to cancer. I know it's a difficult time but know you are near in my thoughts and prayers.

[Zen]

Step-mother sound like a smart lady.
she should make her wishes known as far as burial, cremation, etc.
when my mom died we found out that she had already been to the funeral home and arranged everything herself.

[Mr. Bloom]

"The best way to die joyfully is to live joyfully."

Wow!

[Geonz]

... and if you let yourself listen adn not withdraw (too much... sometimes you have to)... there can be moments to treasure.
One day a priest we knew came by to give the anointing of the sick sacrament ... and he was chatting and somebody dropped by... and stayed... and then there was another knock on the door... and then another... and then there were eight of us sitting around the living room (I had to find chairs!) just sharing the moment and saying whatever kinds of intentions and prayers and thoughts happened (most of the folks weren't Catholic). Death can show us just how connected our worlds are. Love transcends it all.

[Lifesgreat]

The www.fatcyclist.com archives from a month or so ago have some touching posts about how Fatty and his wife are dealing with her most recent cancer battle (it isn't good). They are making videos, hanging out as a family and not doing much differently than if she were cancer-free. The phrase "acknowledging is not that same as giving up" really impacted me.

Maybe there are some ideas on his site for your family from someone who is living it too.

Wishing you comfort and peace.

[Brandi]

I have a very good friend who lost her sister to a rare cancer at a very young age and had it loom over their families head for about a year. They celebrated her life the whole year as much as they could. And were around her every minute they could be but never stopped living their own lives which is what she wanted and told them this.
It was not easy when she did pass. But everyone got to say thier good bye's and that is something we don't always get to do, so in some way that seems cool that you will get to do that. No regrets you know.
My prayer's are with you and your family as well. I hope it is an easy transition for all of you.