My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Tuesday, July 5, 2011

Sorry I've been away so long!  I like to post once weekly, but am really behind!  Too much school!

In my palliative care class, we had to interview someone different from ourselves about their thoughts on death and dying from a spiritual perspective....I interviewed my Catholic neighbor as I am unfamiliar with Catholicism.  Most people I know are pretty much like myself, I'm sorry to say!  I wished I'd had some Muslim or Buddhist friends.  I need to diversify!

One woman in my class interviewed someone from a clannish  blue collar working group in the Appalachian mountains....people who lived near or at the poverty level. I thought hers was the most interesting interview.

In their culture, if someone was in hospice and expected to die, they had something similar to a wake with the dying person present.  A sort of party with music, food and dancing.  People shared their memories of the dying person,with the dying person present.  They had a video of pictures of the dying person at the party, and everyone could go tell the dying person how much they meant to them, say their final goodbyes in person.

They also had a raffle and silent auction with money raised to help for burial (as none of them could afford it) and to make the dying person's last wishes come visit a place they wanted to visit or to fly to see a distant relatives etc.  In a strange way that seemed kind of morbid, but on the other hand, it seemed kind of great!  Wouldn't you in some ways want to hear your eulogy while you were still here?  To leave this life knowing you'd made a difference to people, to be celebrated while you were alive instead of after you were gone?

I attended recently the funeral of my friend's daughter.  She was only 27.  My friend had lost her only other child at age 25 five years ago.  Many wonderful things were said about the daughter.  She'd been valued and loved.  I wish she could have been present to hear how much she'd been loved and appreciated.  To have seen the video of her life and photos of her life at her wake.

Are we doing it backwards?

I used to work at a hospice at a volunteer.  I worked with dying patients, and I could talk to them about their feelings and fears and thoughts as they were dying.  It was a good experience. 

For my palliative care class I had to do a narrated Power Point presentation. We all chose our topics....I chose near death experiences, visions of the dying.  I've read lots of books about that, and the cool thing is, of those who are conscious near death, 50-67% experience near death visions of angels, of heaven, of those who have died before them coming to take them home.   My neighbor, who died of pancreatic cancer, saw her husband, who preceded her in death by 10 years, sitting in a chair in her room in the days before she died.  Another friend who had a sister died of colon cancer at age 30 said her sister saw angels in her room in the days before she died.  I've read several books by hospice nurses speaking of these visions...of people who at the time of their death felt that they were only crossing from one room to the next.  Who were accompanied to their next part of life.  A good book about that, written by hospice nurses, is Final Gifts.

While I am a cancer survivor of 10 years, and  feel that may mean "cured", a word not often used in the cancer community (as most would say I am only in long-term remission), cancer has left me feeling always vulnerable.  I know of those with my particular cancer who've had recurrences at 14 years. I know how the bottom of my life can drop out any time.  I don't take tomorrow for granted. I no longer assume a future (at least here).  I have gotten older..which implies vulnerability in itself. I know my days are numbered.....if not by cancer, then something else.  We are all born terminal.  We need to contemplate that and come to terms with it.  In that sense those of us with cancer are ahead of the game.


CancerCafe said...

Thank you for sharing this, I had no idea of this custom and I think it is wonderful. Had you not posted this I never would have known that others do what I have often wondered about, celebrating a person's life while they are still here to appreciate it. I plan to look further into this to see what other information I can find. Thank you!

cancer and candy said...

I really understood when you said "cancer has left me feeling always vulnerable. " Even though I have been Cancer free for over 26 years I still feel like I am never in the clear. I find the best thing to do is to be proactive and find the best ways to protect myslef aka not smoking, sunscreen etc. Thanks for your wonderful blog

Anonymous said...

Hi Carolyn. I came across your blog while searching for info on appendix cancer. My mom has been battling this disease for over a year. Can I contact you through email to discuss treatments you sought and felt were successful? Thank you!

Carolyn Langlie-Lesnik RN BSN said...

You can email me at carolyn @ (omit spaces before and after @)! I wish your mom the best!