Dr. Wynn Q&A: Cancer Communications
Once you have your diagnosis and treatment plan in place, hopefully the people closest to you are all in the know. Some are eager to help, some are waiting in the wings, some are just watching. When those family members and friends have the essentials of what is going on they can be part of your support team.
But what do you do about the next group? Here I mean the circle-beyond-the-inner-circle — the people you know and like (or not) who have frequent (or occasional) contact with you. Co-workers, your boss, neighbors, baristas and even traffic cops may have questions: Where have you been? Why has your hair (your wig) changed? Looks like you've lost some weight — are you working out?
These people may be motivated by compassion, caring or just curiosity. Maybe they care about you; maybe they're just shocked by the reminder that any of us can get cancer. You may be prepared for a long conversation; you may just wish the person would go away.
How do you respond?
Most important: it's up to you! You have to decide what to say, and to whom. Sometimes you want to share the nitty-gritty details. Sometimes a polite dismissal. Eventually you rank people in terms of closeness: imagine a set of circles, all centered around you. The closest circle contains your friends and family, while the outermost circle is made up of complete strangers (who can be amazingly nosy). You are not very close to the people in the distant circles, while more connected to the closer circles. For the outer circles you are less inclined to share personal information. You probably want to be polite, but you also want to be in control of who knows what about you and what you are going through. You know better than anyone how much energy you want to spend in the discussion at that moment. In short, you decide who is in the inner and the other circles.
For the inner circle, you speak from the heart, sorting it out as you go. At the periphery, however, it may be helpful to have some prepared phrases to serve up: ideas about what to say when you don't want to say anything. There are multiple strategies, depending on the audience: curt, kind, realistic, comedic.
Start with, "Thanks for asking," then:
- "I'm still figuring it all out myself"
- "I'm discussing that with my doctor"
- "I can see you want to help, but I think I've got all the advice I can take right now"
Depending on your mood, you may prefer to:
- Keep it brief — Find something you are comfortable saying that doesn't invite or offend
- Keep it simple — "It's been a difficult time, thanks for asking"
- Keep in touch — "It's so nice of you to ask, how much time do you have?"
- Keep away — "I'd rather not talk about it right now"
- Just so — "Fine thanks, how are you?"
When you just can't keep a straight face, consider...
- "I'm under cover for the CIA, can't talk about it" (and pull down your hat, pull up your collar, turn and walk away)
- (Stroking your bald head) "It's a Jean-Luc Picard/Sinead O'Connor/Yul Brunner thing — you probably wouldn't understand"
- (Staring straight into their eyes) "Trust me, you don't want to know"
This isn't just about taking care of the questioner. It's really about taking care of you, and minding the boundaries that define the inner and outer circles. Remember that just because they ask, doesn't mean you have to tell. Your experience is rich, special, unique, awful, boring, gross, sad, triumphant and upsetting. You can't share that with everyone. Ultimately your innermost circle may include just one or two other people, or maybe just you and your diary.
If you are comfortable with the internet you might consider keeping a blog. A blog (web log) is a kind of diary where you record your experiences and allow a select group of people to read, sometimes to comment. There are several of these set up already for cancer patients, including Caring Bridge (www.caringbridge.org), My Life Line (www.mylifeline.org) and Care Pages (www.carepages.com).
There are also several excellent generic sites that help you set up your own blog however you wish: Blogger (www.blogger.com/start), Wordpress (www.wordpress.com) and others. Setting up a blog may feel like putting your soul on the front page of the Seattle Times, but in fact you can often control who has access to your blog — from anyone, to a select few, to only you.
However you decide to communicate with your inner and other circles, remember that your health and resilience are connected to the company you keep. Be prepared for the unexpected connections. Protect yourself, stay open and stay in touch.
John Wynn, M.D., is medical director for the Swedish Cancer Institute Division of PsychoOncology. In this role, Dr. Wynn is responsible for developing programs to help patients and families cope with the cancer experience. He also attends to the educational and emotional needs of professionals working in the highly demanding field of cancer care