When people found out I had advanced lung cancer, in general they were wonderful. Sometimes, though, all the “wonderful” was a little much for me to take. They wanted to visit, they wanted to help, they wanted to understand what was going on – often when I didn’t even understand it yet myself.
By nature, I am an introvert. When something big is happening, I like to be alone with my thoughts, sometimes for extended periods of time. All the love and concern that friends and family were sending my direction was warm and genuine, but sometimes it also exhausted me.
For a good period of time it was difficult and painful to speak above a whisper. My vocal cords were just that irritated from the bronchoscopy and from all the coughing. I could manage a few phone conversations a day. Where possible, I wanted to save my voice for things like communicating with the doctors.
I am also a graduate student and a teacher. I’m working on a PhD in American religion, and I teach college courses at a state prison. Obviously, when I was so sick, my ability to study and teach was severely compromised, but I still wanted to do what I could. I didn’t want to be a full-time cancer patient. Sometimes I just wanted to work, and not think about my illness.
Eventually, I figured out a couple of things that were helpful for managing all the love:
- I used CaringBridge to communicate with most of my friends and family. CaringBridge, www.caringbridge.org, is a very simple, free blogging service for people with health conditions. When you sign up for a CaringBridge site, you choose the level of privacy controls you’d like, so your health information doesn’t have to be public. The interface is a little bit corny (you can choose to decorate your site with flowers, nature scenes, seasonal decorations!) but the great thing about it is how simple it is. You keep an online journal, with whatever updates you’d like to share; people can leave you guestbook messages; and that’s pretty much it. There’s no comment feature, no option to contact you directly – and when I was feeling the most miserable, that is exactly the level of interaction I wanted. Using CaringBridge meant I didn’t have to repeat the same details over and over, or try to remember what I had explained to whom. Of course, if I had major news, my partner and I would try to reach my mother and my sisters by phone before posting on CaringBridge. For my wider community of friends, relatives, and colleagues, though, CaringBridge was the way to go.
- I tried to think of the people in my life that I always, without exception, enjoyed being around and whose presence was always soothing, never stressful. Surprise, surprise: this was a very short list, with no immediate family members on it. These weren’t even necessarily my best friends, although some have now become my best friends. Whenever possible, I put these people in charge of things. For instance, a cheery, easygoing colleague from my program coordinated all the people who wanted to help us with meals. (In our case, this included next-door neighbors who brought a casserole as well as friends on the other side of the country who called in Chinese-food orders long-distance and had them delivered.)
- I kept a running wish list, so when someone asked, “Is there anything you need?” I had answers. Some of the things I wanted and needed were simple and inexpensive (I coughed up a lot of clear mucus, and could never have too many boxes of tissues). Some were wild dreams (hmmm… if the summer of 2013 was quite possibly going to be my last one, was there any way I could take my daughter and her cousins on a Jersey Shore vacation?) Although it felt greedy to ask for so much, it turned out that many people in my life really wanted and needed to give. (We were given that Shore vacation, and other spectacular gifts. Along with many, many boxes of tissues. None of which went unused.)
#2 is great. I was lucky to have a dear friend (who is amazingly organized) coordinate all my helpers. Meals were arranged for every chemo week, and she even collected and returned all the empty soup pots and lasagna pans. This is one of my top pieces of advice I give to people in this situation: assign a point person.
Keep writing, these are great!
I learned through experience that all of these things were helpful for my mother, who died in 2011 at 42 years old after a year long battle with Stage IV lung cancer. I’ve wanted to comment before this entry, but I’ve been worried about saying that my mom had something that you do, and that she didn’t make it. It makes me feel like it’ll make you more scared, and not be helpful, and that is the opposite of what I want for you. I sob every time you make a post because it hurts so much to see your story splayed out in front of me, a story that is so familiar and so raw. But I am grateful for your strength and I thank you for your story.
Veronica, believe it or not, sometimes I find it more helpful to connect with folks who understand the seriousness of my illness than with those who insist everything will be OK. I am so sorry about your mother. Thank you for commenting.
It is wonderful to read you writing again, Beth. I certainly had trouble accepting all the love given me during my initial illness. I was so unaware of the number of good and helpful friends I really had. I also prefer connecting with friends and family members who understand my poor prognosis and accept my up-and-down life.