This blog post was published in December, 2012.
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 six 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 two 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.
When you feel awful 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. They give me hope. Unfortunately, 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 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 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.