Dealing with cancer is difficult, but dealing with it alone is unthinkable. My mom has her close friends and a few cancer "warriors" who talk to her regularly and provide support. The conversations start off with asking how she's doing and then move on to other topics like family gossip, cooking recipes, stories about life in China ages and ages ago, or current events. It's good to have her mind off something when she's talking to friends. Being at home and feeling unproductive can be depressing. Right now, she keeps calling herself an "invalid"... like "how can I be happy when I'm an invalid." To try and cheer her up, I bought a wig for her, so that hopefully she can feel more normal being in public.
Support is important. For me, I've found online forums and discussion boards not only a great resource, but also a place of comfort. It can be cathartic reading about people's own experiences and feelings that often match yours- fear, anxiety, hope, dread. It's that common bond or that club no one wants to be affiliated with. People starting treatment soon, or just diagnosed. People with advanced disease for x many of years sharing their experience and offering hope. People dealing with horrible or odd side effects and asking for advice. People who just need to vent. Oh, and there's a lot of venting and a lot of cyber hugs and "I feel you" messages. There's also a lot of TMI topics, like about poop, and...well right now, only poop comes to my mind, but you get the idea. What's so great about these online forums is the fact, that for the most part, you're anonymous. You share as much information as you care to. People only know you as "chemo cancer chick" or "grumpy monkey" or just "Rick." I can log on anywhere and find my people. And you get to know the "regulars" in each group- the people that butt heads, the people that are so funny, the people going through this "battle" and being honest without any filter.
Very recently, I decided to join a young caregiver's support group in Manhattan. I thought it might be comforting to find young people like me, going through what I'm going through. I felt it was like a gift to myself because I would literally be spending money to go into the city every week. (Of course, that also means doing grocery shopping for my mom while I'm there). Getting to my first meeting was a mad dash of sorts ...rushing into the city, dropping off food for my brother that my mom had made, dropping off mom's forms for filing a tax return...all before taking the subway to the 5:30pm meeting.
Out of breath and about 15 minutes late, I walked in. I saw a small group of people around a table. I waited and listened as the group moderator finished introducing herself and explaining the "ground rules" for the group. And then we all introduced ourselves. For the first time, I was no longer anonymous. I couldn't hide behind my teddy bear profile pic or my nickname. I looked around the table, all of us looking nervous, preparing to expose ourselves and our relationship with cancer.
I came away from the group with mixed feelings. Perhaps it's because the group is so small and everyone's situation is different. No one in the group is caring for their parent to the extent that I am for my mom. No one had the same disease. Some weren't really involved in their care, mostly because of distance. I know people say that cancer changes people and they have to find their new normal. But that's just it. I'm not normal. Even in a group for young caregivers, people "like me," I felt myself feeling rather different and just a tad bit more alone in this circumstance.
However, I will continue to go to this group because I made a commitment to myself and will keep an open mind. In addition, I found some useful tips from distant caregivers that my brother could apply since he doesn't live at home. For example, he could call in at the doctor's appointment or participate by "skyping" into the meeting. I doubt the doctor would mind.
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