I wrote this only a few months ago, but I am reposting it because it strikes at the core of what I feel so often. So many people responded to this piece saying that whether because of cancer or some other medical/life experience they could relate. Sometimes feelings like loneliness can be the hardest to describe.
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I can see how isolating metastatic cancer can be already.
It has become hard for me to be around other people.
I find myself hiding as much as possible.
When I am in the company of others my mind wanders.
I can’t focus. I feel the need to retreat.
For the time being I just can’t relate to others’ lives which only weeks ago were so similar to my own. Now… we are a world apart.
It’s not their fault. It’s just that circumstances make it so that I am selfish. I try to conserve my energy as much as I can.
Already I can see relationships suffering. There is a fine line between giving space and putting distance. Some are already dropping away, and we’ve only just begun. Others have risen to the occasion and helped more than I could have dreamed. Only true friendships are going to make it under these circumstances. Sometimes the isolation comes from being shut out. Sometimes it comes from locking yourself away.
Phone calls go unanswered, emails often do too. Thank you notes don’t always get written, social commitments get canceled or never scheduled in the first place.
I know that people cannot truly understand.
I don’t want a support group right now because metastatic cancer has a wide range of outcomes. I don’t know if I will be in a rapidly progressing group or not. I don’t know whom to look to that is “like me.” There is no way to know which group I will be in, who my peers are.
Right now I am very sensitive to death, to pain, to suffering. It’s very hard for me to see right now. I’m too raw. I just don’t think I’m ready for a group. But I won’t say I never will be.
It’s difficult to listen to people complain about trivial things, normal things, things I was complaining about just months ago.
Now those complaints just annoy me, or make me sad.
I want to scream, “I want your problems!” And I do. I want that life back. I want to turn back the clock. I just don’t want it to be this right now.
One of the things that bothers me the most about this disease is the knowledge that the way I feel right now is the best I will ever feel for the rest of my life. It’s only going to stay the same or get worse. That thought terrifies me.
When you feel crappy you want the time to go faster. You just want to get through it.
The problem is that what you may not have is time.
It’s a conundrum. You want the time to pass, but this is the only time you have.
I know so many people say, “No one ever knows how much time they have. You have to make the most of every day, of every moment.” I know that’s true. But the knowledge that there is something identifiable in your body that is a threat, is most likely to be that which kills you, bears a different weight. Of course the doctors don’t know exactly how much time it will be. There is no crystal ball.
Everyone tells me the stories of friends and relatives who were told they only had months and years later they are still alive and doing okay. I am told these stories every single day. I get it. I do. And I love them, they give me hope. But often those people’s diagnoses and particulars bear no relation to mine.
Additionally, there are also stories of the people in the other group, the ones who thought they had years and didn’t. People probably have the good sense not to tell me those stories. But they are out there. It’s not that I focus on the negative. It’s not that I necessarily think I will be in that group. But anything is possible. On both sides.
The part that scares me: I’m only at the beginning. I hope that I will get stronger, gain acceptance as I get used to this diagnosis. But I’m not sure about that. I truly believe I could handle this better if I didn’t have so much worry about my children and what effect this will have on them. I wish I could protect them, shield them from this agony.
There are good days and bad days. I must do my best. But being the one everyone is watching takes a toll. Everyone will take their cues from me. I will set the stage for how my friends and family will deal with this: how I handle metastatic cancer matters. I am laying groundwork. I feel I must do it right.
Some days that is an overwhelming task.
“Doing it right” doesn’t mean I have to be positive all the time. Doing it right means I have to be honest. It means I get up each day and do the best I can. For myself, for my husband, for my children, for others who may have cancer and those who will get it. It’s okay to be scared, and angry, and sad, and everything else.
It’s all part of this.
And for me, so is sharing.
Link to Twitter
I posted a reply the last time this was posted. I don’t have cancer, in fact, there are times I wish I did. Maybe then doctors would know how to treat me. I suffer from a nerve condition in my stump (I’m an amputee) that was exaerbated by chronic pain. I hate taking the pain meds, because they only last but so long before something stronger needs to be used. I’m being treated by the VA, which is an odyssey within itself. I feel like a freak..there are those who try to understand and sympathize and others who think I’m just after meds. I feel like nobody understands.
Cyndi,
Several years ago, I read the most interesting article about a neurologist who has done revolutionary work with amputee pain. This is the link to the New Yorker article. I hope you can get to the entire article.
http://www.newyorker.com/reporting/2009/05/11/090511fa_fact_colapinto
Alyce
Cyndi,
Another link to the New Yorker article above. . .
http://archives.newyorker.com/?i=2009-05-11#folio=076
Alyce
Cyndi,
If you want to read the New Yorker article mentioned in the below comment that has a link to just an abstract of the article, I put its full text here:
http://dl.dropbox.com/u/80550689/nyer_braingames.htm . Good Luck to you.
Lisa, A lot of what you wrote could be about me, but different situation. My beloved son Jered, who had just turned 30, passed away four years ago. People, friends, family members, colleagues, neighbors, didn’t know what to say, what to do. Those who had experienced grief were the ones who knew what to do, but they were few. I agree with your statement about the isolation. I decide who I can be around socially, how much time I give to others, and what I can cope with. I know that people have forgotten my son, but I haven’t. If I mention his name or tell a funny story about him, some respond in an accepting way, others cringe and feel uncomfortable. It hurts. We may have different situations but we are experiencing much the same. Sending you love and hugs Lisa.
Thanks for sharing this. Many of your blog posts help me understand what my mother is going through. Amanda
Thank you for sharing Lisa I can relate to parts if your story deeply – dealing with the “unknowns” and all the waiting was excruciating when my son was sick.
Thank you for taking the time to write.
this is the most agonizing thing i’ve ever read.
You are “doing it right” Lisa because you are sharing honestly and genuinely. None of us can walk in another’s shoes entirely, but you are helping so many of us get a glimpse into the fear and devastation of MBC, but also the hope and fortitude that can co-exist with the fear. On those tough, overwhelming days, feel the collective support of your family, friends, and those of us who don’t know you personally, but know you through your writing. Thank you.
You have expressed my feelings exactly. I could not have said it any better. Bhatton
You are doing it right. I have never, since I began following you in 2009, not seen you do it right. The other day I saw you post on Twitter about how to teach children resiliency. I thought when I saw that what I have thought many times about you: You are doing the very best you can every day in a devastating situation. And by the very best you can I mean you are intelligently and honestly sharing your feelings of anger, terror, isolation, happiness, pride, love, sadness, loss in a way that enriches people around you. And you are continuing your life with your family, the lovely Lucy the Corgi, and books, and friends. I know the skin-peeled-off kind of grief you are talking about as much as I can, and I wish I could make it stop. I know I can’t, but I want you to know that I recognize the loneliness you are talking about, and I honor it.
Thank you for your honesty in what you are going through. I hope that people continue to surround you with love and kindness as you go through this time. Hugs.
While I don’t have mets, you described how I felt throughout cancer and into recovery. It really is like living in an alternate reality. Looking into “normal” feels cruel, so it’s best to create distance.
I’m not going to tell you one more story of one with mets who beat the odds because I know you’ve heard the stories and, yes, they’re inspiring. I’ll only say my hope is years from now, we’ll all be telling someone else your story and how you’re still with us.
I see too many similarities to depression. Fuck ’em both.
This is so touching and true. I have saved it in my important writings to re-read