April 15, 2012

Still Here?

Can I live too long? Can I outlive my usefulness? Can you get too tired of listening to me talk about death and dying? I don't think so. But is it possible? In my earlier blogs I wondered what might happen if I lived past my 12-18 month prognosis. And with my recent birthday, I've passed the 12 month mark. This is where everyone points out that doctor's estimates aren't very accurate and that I'm looking pretty good these days, which is supposed to make me feel good and helps to better deal with my situation. Well, the steroids are fleshing me out so I might look better from that, and my pain is under better control so maybe I can afford to be optimistic.

Outliving my prognosis would certainly give me the time I needed to say the many, many things I want/need to say. I would have a more wealthy set of experiences upon which to draw for my writing so the legacy imparted by dyingdigitally.com would be more robust in terms of content. That would be a good thing, right? And, of course, there would be all the extra time that I would get to spend with Dianne and the rest of my family and friends which can only be measured as precious.

So all in all, outliving my prognosis is a good thing as it would be for anyone and certainly something I should never, ever feel guilty about.

So what's the issue? I've read a few article recently about others who are dying of critical illnesses like cancer and who have written blogs or used other forms of social media to keep friends in touch with what is happening to them. As expected, their friends reach out to them in many different ways to offer help and encouragement and maybe even say goodbye in whatever way is comfortable for them. But as time goes on, they find that their friends are still around and start to feel uncomfortable saying goodbye again and again. Here's a quick quote fron one blog to illustrate the point:

"...many of her friends have, to put it bluntly, grown weary of her dying. They aren't so cavalier about it, but it's clear people don't know what to do or say anymore. That sounds terrible. But it's an un-discussed issue with cancer: When do people develop a "maximum saturation" with your problems?"

Wow! This was something I'd really never thought about before. And while I raise it here as an interesting aberration, I choose to discount it and suggest that it is in the eye of the beholder. If you wish to say goodbye and find it too uncomfortable to continue to have a relationship with a friend who has a stroke of luck in an otherwise difficult situation, then that's just sad.

Having said that, there are some other interesting aspects to this kind of situation which go beyond the emotional side of saying goodbye.

What about survivor's guilt? I must admit that, at times, I feel a little guilty that I have outlived so many others who have developed cancer. Irrational, I know, but there it is. Many people die within a year of diagnosis and here I am still around after almost ten years. While I am tired of being sick for so long, I am not tired of living!

And then there is the impact on our caregivers. Caregiver fatigue is a real phenomena. We rely so much on our spouses and other loved ones to take care of us, knowing how hard it is on them but thinking it's not forever. But as our illness drags on, it sure can feel like forever and they may not get the breaks they need to take for their own health. This is absolutely something that weighs heavily on me. Dianne would never say anything about this to me but I think I would know. I would know and I would do something about it if I could.

And there may be practical considerations associated with outliving your prognosis. Many of us are on some kind of disability insurance which may not last forever. What do we do when that income dries up? If you are working, what happens when you can't work anymore? With no income, how do you pay the bills? How do you pay the mortgage or the rent? This is how people end up on the street. There may even be limits on Hospice benefits in some jurisdictions so even this compassionate end of life support may dry up.

So it's much more than just people getting tired of you hanging on. Maybe that's just some kind of weird guilt thing that manifests itself in people like me who care about the people we love and the pain and suffering we put them through. But it is complicated and many facetted adn shouldn't be taken lightly. If you feel guilty, you need to talk to your loved ones about it. If you're feeling uncomfortable about saying goodbye over and over again, then don't. Just enjoy the time you have as you would normally. True friendships will prevail and if they don't, then maybe they weren't all they were cracked up to be in the first place.

I hope you found this to be an interesting wrinkle on the subject of death and dying as I did. So far, I'm not in any of these situations and I still have the expectation of dying before too long. With all of the symptoms and side effects I fight daily, I just don't expect a miraculous recovery or an extended illness.

So here I am, hurrying to get things done, feeling the pressure of time, but not really worrying about whether I'm overstaying my welcome. Why should I?

Personal Update

As I lower my steroid level, I find my pain returning. It's still manageable but it's there. My fatique is also returning and I forgot how debilitating that can be when my body needs to sleep 15-16 hours a day. I'm seeing my doctor this week to discuss these tradeoffs. The fact is there may not be some ideal level. I may have to live with some things I'd rather not have to live with. But regardless, it's still living!

69 comments:

Lori Hope said...

This is an absolutely fascinating wrinkle on death, Doug, and I only wish I had the time to post the thoughtful comment it deserves. I've been thinking about my own, "Nobody likes chronic" situation and the pity I feel from some acquaintances and family who think I'm dying (and I am, of course, as we all are, but I maybe sooner, and you maybe sooner than I).

So how about a "What people who are dying want you to know"? I'm kidding, sort of...but in any event, you could put together a few statements.

You bring up so many other important issues and questions re: disability, caregiver fatigue (David has the flu now and I feel like it's my fault in part because I've been so helpless and he's had so much responsibility hoisted on him), etc. I won't go on and on about how many people outlive their prognoses - I know that won't be of help - but I can say one thing that I hope may help a bit:

I love reading your blog. I love the insights you offer, the wisdom and humor you share, and of course the questions you raise. Rilke asked us to love the questions themselves, and you make me love them more than ever.

Thanks and I look forward to hearing how it goes w/your doc this week.
Love to you and D,
Lori

B. said...

I know what you mean. Since 2008 I've been blogging about my various issues (notably melanoma and anxiety) and wonder how many people still keep up with my wanderings. On the whole, though, as long as there is a reasonable amount of positive content I think most readers will keep coming back. You talk about your problems but also give the rest of us ideas about how we might cope if they were our problems. You pose big philosophical and spiritual questions which get us thinking about issues we would otherwise tend to sweep under the rug. As for the "multiple goodbye" question, I just think of each posting as a kind of meeting between writer and readers. When the meeting is over we all say "goodbye". If there is another meeting surely we'll do it all over again - won't we?

Good luck to you and keep up the good work!

Darlene said...

Hi Doug, interesting perspective for sure. In my case, a dear friend is dying of cancer and it never occurred to me to say goodbye. Not yet anyway.

I always think there will be time for that, when her doctors tell her that her chemo is no longer working, or when she's in the hospital and we are all being called in.

But I guess life doesn't always work that way does it? Now that I think about it I don't think I'll ever say goodbye while she's still alive. I'm there for her because she's alive, I've held her hand and cried with her, and I will be there to execute her will. I think I'll say goodbye when her ashes are being released. That to me seems appropriate.

Thanks for posting this.... I'm comfortable with this new decision.

Darlene

Heather Blackwell said...

In 1973, the late author Carlos Castaneda once quoted to a reporter a little piece of graffiti that was written somewhere in L.A. Apparently, it was one of his favourites as it is mine. "Death is the greatest kick of all. That's why they save it for the last."

I was 22 when I read that and was certain that I would die young. When I read it, it calmed me, and I have embraced it since.

About saying good bye, I do like Doreen's attitude about her dying friend. Nothing lasts forever in its original state, especially as we prepare for the next great adventure. So, while her friend is still alive, wherever she is on the road, Doreen refuses to say good bye.

Yes, people may and do grow weary with your blogs, and they take breaks from it. It's a rough ride to read just as it is to live out. The only break you get from it is when you sleep 15-16 hours. Remember Doug, that while you sleep, you give yourself a break, you conserve what energy you may have, and you give opportunities for respite to those around you. Sleeping at this time is not a crime - it's an ordinary experience.

Dying as you are is exhausting. It can't be anything different. It's the gift of respite, if you accept it as that.

And if I grow weary of your blogs and need a break, it's not personal, it's respite and self care. This is a tough slug.

Happy trails!
H

Anonymous said...

I read recently that of all households in the US, 30% are now people living alone. Its the same figure for the US. I heard that it's higher in the city of Vancouver, where I am.
For many of them, there is no 'caregiver' available. What are those lives like?

raptordreams said...

Living alone is an interesting experience. I live alone. At 60, I'm almost a senior, but don't see myself that way yet.

I can't speak for the U.S., but I would imagine it's much like Canada, where home care is offered for those who are very unwell.

In BC, it's called Home and Community Care. In Ontario, people are serviced by Community Care Access Centres. I work for one.

One of the purposes of these services is to link people who live alone with other agencies who can offer some care beyond that which the Home Care programs can offer.

I think, as a former cancer patient, that if I were to get sick, some of my friends, co-workers, or family would give me assistance where my independence were compromised.

I saw this happen with a co-worker who came from another country, had no family here

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