Postby Gaelen » Mon Jun 08, 2009 11:31 pm
Joanne--I'm going to go in a different direction.
Don't take a break. Stay here, and face what you're feeling. Discuss it. And show other people what that feeling is going to feel like, because everyone here is going to have to deal with it sooner or later. And it's a lot easier to deal with these feelings as part of a community than it is to deal with it on your own.
The feelings you describe are something a recurrent cancer survivors support group in which I participate has discussed a lot. A couple of us are currently stable or even NED. A couple of us are far from stable or NED. When someone doesn't show up, too often the news is that they're hospitalized, or in hospice. Yeah--we talk about when and how to bring in hospice. Because some of us need that discussion--either because it's a real-time critical situation, or because while we're not there yet, we want to know how to do it, what to expect. Coming to group every other week puts those of us who are in a healthier place face-to-face with people who are...not. It's not a comfortable place to be. We are all some variation of Stage IV. We have different cancers, different challenges, different levels of physical debilitation, but we have no illusions--illusions don't survive in a recurrent cancer support group for very long. We just celebrated one group member's 80th birthday...and reminded her that she can stop her new chemo if it makes her too ill to feel like a part of her own life. And we just all signed a card for a member who has entered hospice.
To be honest, some weeks I don't go. The other currently NED survivor (who looks like a picture of health compared to me, IMO) took an extended break about two months ago--but lately he's been back. Both of us discovered something in our time away from the group which we shared with the group, because it was an important realization for each of us.
We've both discovered that no matter whether we go to group or stay away, we cannot keep cancer and cancer survivor support out of our lives. We are known survivors. That means that even though we don't (on purpose) put ourselves in a support situation, support situations find us--and then we have to handle them without the people who emotionally and mentally support US. We get the family, friend, co-worker and friend of a friend phone calls at all hours from the newly diagnosed, or the survivors whose lives are suddenly turned upside down by recurrence. We are their first-line resources, the people they turn to with questions because they know we've been there and they hope we can help with what they're feeling. We're not logging in to offer this support, or engaged in a face-to-face mentor program. These people are coming to us. We can't turn them away; we know firsthand how important patient support is. But even when we choose to take a break from organized support, that sudden need support finds us.
I'm a CCA buddy. I took a break (about a month) last summer after losing the 4th stage IV buddy in two years. Did cancer patients take a break from seeking me out? Not at all. CCA respected my request and didn't ask me to buddy anyone during that time--but two co-workers were dx'd with advanced breast cancer, a third had a mother dx'd with colon cancer, a 4th lost her father-in-law to lung cancer. I was on a break...and I was doing more face-to-face support than ever. Sometimes it just never lets up.
Yes, it's gut wrenching to read bad news on a computer screen. And you can turn the screen off.
But once you've become 'the cancer survivor' for your own community of family, friends, and co-workers (and sooner or later, you will become that in your circle of family/friends) then cancer can wrench your gut every time you answer your cell phone, open your office door, go down to the coffee machine, go to the gym, take a dog training class. Public cancer survivors really never know when or how a cancer patient who needs the support of an experienced survivor will find us. But they *always* find us. We may try to move away from the face of cancer for awhile--but the face of cancer keeps entering our lives.
The difference between getting gut-wrenching news from someone sobbing in your office and getting it from within a support community is that there's shared strength in a support group (face-to-face or online) which can help everyone get through the difficult news/times. When you're 'the cancer survivor' for the people in your real life, there's no one to fall back on except yourself. And that can take an even bigger toll if you have no understanding support community supporting YOU.
That doesn't mean you should ignore the opportunities to enjoy the life you have, wherever you are.
It does mean that even when you think you're taking a break from cancer discussions, cancer discussions have a mind of their own, and they'll find you. So you need to do whatever will help you with that kind of support.
So my NED support group friend and I go to recurrent survivor group meetings--even though we're not actively in treatment. We discuss our issues, too--with others who get what it's like to need to discuss difficult subjects when there's no one around who understands. They remind us that the same perspective others are seeking is what can sustain us. And they remind us that while everyone's situation seems like the end of the world to the individual, there is always someone else in a worse situation. We (and the others in that support group) recognized together that no difficult subject is too taboo--whether it's about how to die of cancer or how to live with it.
Your mileage may vary...but give some thought to the reality that as a survivor, you need support, too.
Be in harmony with your expectations. -
Life Out Loud4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment