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!