Dancing in Limbo

[Magnolia]

I'm reading a book called, "Danciing in Limbo" about the post treatment phase of survivorship. Some of this stuff hits the nail on the head and some of it is quite disturbing. It talks a lot about feeling a let down after treatment when the feelings being super motivated and stronger than the disease wear off. It suggests, strongly, that those feelings are just a defense mechanism. I think not. I agree that there's some strange emotional stuff going on after treatment, but I attribute it to having more time to focus on being scared, and having much of your support system reverting back to "normal" life while your life will never be quite normal again.

While I was in treatment, I had ups and downs, but a lot of the time I felt like superwoman. I believed I could beat the beast and I did. I felt like the strongest person in the world. I don't deny that I needed to feel that way, but I also believe it was real. If it wasn't, it wouldn't have happened. I was also spoiled rotten for the first time in my life, and had just about everyone I know TELLING me all the time how wonderful I was. I got to like that. It's not like they're ignoring me now, but I'm not sick any more and I'm not being pampered like I was. The party's over. Part of me kind of misses being the center of the universe and the most heroic person all my friends and family ever met. I think that's where my let down is coming from, in part. I'm just plain spoiled.

Then there's the fact that I do have more time to think about long term concerns and fear of recurrance. I WAS focused on remmission, and now that that's a done deal, years of uncertianty are looming ahead. I'm actually in a scarier place than I was before, and to everyone else I'm all better. This is the part that the book has absolutely right. I was in a couple of other life threating situations in my youth, but when they were over, they were over. I knew I was safe. Not this. This has that uncertianty factor we all have to cope with. Just as we think it's all over we're facing a new phase of emotional adjustment and our support people have no idea what it's all about. WE aren't even sure what it's about. We're supposed to be happy, but something feels off. We're not counting our blessings, we're losing sleep.

I think I'm gaining some insight into this, and my outlook is still positive, overall. I understand the heebie-jeebies. I expected that. My years as an oncology nurse taught me about that. The ex-spoiled rotten superwoman thing was not what I expected, though. I never thought I'd miss being a cancer patient.

[MissKim]

I found your post very interesting. I was dx in 6/03 with cc and mets to the right ovary. After I was done with chemo the first time, I felt very nervous. I have since had three recurrences. I have had an amazing support system; but the meals, phone calls, visits have pretty much stopped coming. I think that everyone is just used to me being in treatment and that is the new "normal" for me and my friends. My family has been great -- I still have help with my kids when I need it and meals brought over occasionally. I don't expect to be the center of the universe; but I am still fighting this crappy disease and wouldn't mind friends checking in with an upbeat phone call or visit...

[Magnolia]

Well, Miss Kim, here's one from me. (((((Kim)))))

[margotmagoo]

Magnolia,
Thank you for your post!! I was just trying to explain those feelings to someone last night but did not seem to do it very well. You explained it
beautifully! I feel exactly that way. I just try to tell myself that the fact my support has faded means I am healthy....for the time being. I totally related to how you mentioned that friends think you are better and they return to normal lives but you still have this fear looming like a cloud over your head. I told my husband that it's kind of like a car accident. When someone is in one, it is a sudden and unexpected event...you don't know it's coming. Having cancer is like someone telling you that in the next 5 years, you might be in a wreck but you don't know when or if it will happen. I will have to get the book. Thank you again, Margot

[Magnolia]

Margot, I was diagnosed in March of 2006 with stage IIIc. I was 51 with no symptoms. I was having my "happy birthday" colonoscopy and hit the jackpot. It's a bit of a diferent story from most of the young people on the board who were having symptoms and had trouble getting a colonoscopy because they weren't old enough.

I'm getting farther into the book, and still have mixed feelings about it. I still don't like that it's telling me I wasn't really superwoman. I want to believe I really WAS that strong, and still am. The fear that I feel now is not debilitating. I'm coping with it. I'm just having to handle it differently than I did the treatment phase. It's a more private thing. Treatment was like running a marathon with a cheering section supporting you. I was all pumped up and full of piss and vinegar. This in darker and quieter. I'm still coping, though. The book keeps saying that the defense mechanisms can't last, and that it all falls apart after treatment stops. It changes, yes, but I wouldn't call this falling apart. I've fallen apart before, and trust me, THIS IS NOT IT.

The explainations of things are right on target, though. Very insightful. Like I said, I expected the heebie jeebies, but I didn't expect to miss being spoiled. And I miss the "runner's high." The book brought that out too. The main thing is that "normal" for us will never be normal again, and it will be for all our support people.

I never wanted "cancer survivor" to define me. I want to get back to being a regular person again, but I don't quite want to forget who I was when I was superwoman either.

[Magnolia]

I've been thinking more about why the book bothers me when so much of it is so accurate. Early in the book, one of the authors comments that many of us who survive experience fear initially, quickly followed by a surge of hope. She attribute that hope, and many of the positive feeling that follow to a delusional idea that we have some control over the outcome of our treatment, that we can "fight" and "beat" our disease if we're strong enough. I read another book, "The Anatomy of Hope" by an oncologist named Dr. Groopman who uses some real science to suggest that that very surge of hopefulness actually DOES contribute to a positive outcome, whether that be cure or long term management of chronic disease. The fact that long term survivors felt that hopefulness may not be a fluke or a delusion. It may well have been a factor in their survival.

The authors also attribute all our coping with fear to defense mechanisms. They call it denial, avoidance, repression and so forth. They say these are healthy defenses and allow us to function in the face of what could otherwise stop us in our tracks, and I agree in part. What's been bugging me is that I'm halfway through the book and not once has "courage" been mentioned as a reason for our ability to face our fears. I'd like a little credit for what I know is true. All right, the fact of the matter is, I've already been given a lot of credit. I want MORE. I know cancer survivors are some of the bravest people around. I want to world to acknowledge it. I want the authors of that book to acknowledge it. They're both survivors. What's wrong with them? Don't they feel courageous? Do they really think it was all smoke and mirrors? The fact that our energizing hope settles into a quieter coping after treatment doesn't mean our hope and our courage have failed or weren't real in the first place. It only means we're facing a different dragon.

[Magnolia]

I'm still having this love/hate relationship with this book. I've read so much "feel good" stuff that works great when I want to feel good. But survivorship's not all about feeling good. "Dancing is Limbo" is about the darker side of survivorship. It discusses fear, denial, depression and all sorts of things we don't want to deal with. I read a chapter and come away feeling like an emotional dishrag. I feel like all the strength has been sucked out of me. But then I realize all the fear has always been there. I'm just wish there was more balance. I like that it addresses the dark side. The darkness is real. Maybe I've had enough "Chicken Soup" for a while, but this seems a bit too dark. I don't need to strip away ALL my defenses at once. I need to be able to put on my superwoman suit now and then. I was having a bit of a meltdown the other night while talking to my husband, and my daughter called from her room. I had to pull it together and go see what she needed. Superwoman. The book doesn't give us credit for that. That's real. The book calles it "repression of feelings". Isn't that what strong people do? We HAVE feelings, but we can function in spite of them, when we need to. We have our "moments" later, when decisions don't have to be made and things don't have to get done. It's only a problem when some people have to be strong all the time. Then they never allow themselves to have their "moments".

Anyway, I'm appreciating a lot of the insights in this book, but it's hard to read. Maybe I should put it away and try it later, but I'm kind of hooked.
Anyone else aquainted with it? Anyone else intrigued?

[MissKim]

"Dancing in Limbo" sounds like a real emotional roller-coaster! I think I have had enough dark thoughts lately and I don't think that it would be good reading for me -- especially since I feel like I am in a "funk" right now. I think that I would like reading "Anatomy of Hope" because I truly do feel like a kick @$% attitude and upbeat spirits have helped me along this 3 1/2 year road. Just some thoughts...

Miss Kim

[Magnolia]

Kim, I think I'm feeling that way too at the moment. It was nice, for a while, to see that someone was acknowledging that the dark feelings were real and normal, and that it isn't all about perky positivity 24/7. Now I need to get out of the dumps and back on the bike with Lance and start riding again. This race isn't over. One thing "Limbo" has right is that there are years of uncertianty ahead, and, although the initial fight has been fought, no one knows what the future holds. The authors don't seem to believe we can influence our outcomes, but I don't believe that. I plan to focus on overall good health. A healthy body can fight cancer better than one that's fighting other things as well. That's just common sense. I can do a lot to keep myself healthy in so many ways. I can keep that kick a$$ energy going as long as I need to. The dark stuff comes and goes, and I have to understand that it will do that, but wallowing is not helpful. When it comes, it comes. Then it has to go.