When I first began to tell friends about my diagnosis I noticed that some were uncomfortable with hearing the word “anal,” and at one point I thought maybe I should call it “peri-intestinal” or some such, and so spare them that word. But the worst was in the major cancer center where I went for consultation. In the MRI waiting room sat an array of patients chatting with each other, asking “and what kind of cancer do you have?” and discussing treatments, etc. A lady next to me turned and asked me the question, and I answered plainly, “anal cancer.” There was silence. And she started talking about something else….Telling people about your diagnosis is never going to be easy.
It reminded me of Arlo Guthrie’s immortal “Alice’s Restaurant,” and how he was arrested for littering, and later at the draft board sent to the Group W (criminals) bench when they find out about his arrest record. And one of the guys on the bench asked him what his crime was, and on hearing “littering,” they all moved away from him – “Mother rapers! Father stabbers! . . . And they all moved away from me on the bench!” Later, of course, they hear that he was also arrested for creating a nuisance, and they all move back on the bench with him. (The full transcript is here.)
Talking about cancer is difficult, even today when most of us are used to reading about it in the press and even having it be the subject of a movie. It’s particularly lonely having a cancer whose name no one wants to hear! But don’t let the misunderstanding and squeamishness of friends or family make you feel ashamed, leading to the sense that you have “done something wrong” or “deserve this cancer.” It’s not your fault! At least the issue is coming out in the open, and Newsweek has published an article about the stigma.
You will read elsewhere on the site that anal cancer is not evidence of a history of anal sex. The HPV infection that is involved with the majority of anal cancer cases is transmitted by skin contact, often by sexual contact – but not always by intercourse. Further, recent research has demonstrated that HPV is not killed by many of the disinfectants in use, and so can be transmitted by medical equipment - including that used for colonoscopies and gynecological exams! And not all anal cancers can be traced to an HPV infection. Let your friends and family know that many of the patients you meet on the blogs have never had anal sex, just as many have never had multiple sex partners. And it’s really none of their business what kind of sex life you’ve had! Finally, we now know that smoking can suppress your immune system, allowing that HPV to break loose and start causing trouble..and that applies to secondary smoke as well. Here's a powerfu story about Jill de Nardo, an actress who greatly admired Farrah Fawcett, and then was diagnosed with anal cancer hersel. When she met the same embarrassed reaction she decided not to be secretive - and joined the HPV and Anal Cancer Foundation to help the public gain a better understanding.
You do have to be prepared for the estrangement or complete disappearance of some friends or family, even individuals whom you would never have imagined would do so.* Erika Lade has a very perceptive essay on "Nobody Shaved Their Head for Me," classifying the reaction of friends as Stage I to Stage IV (the worst, of course!) types. Sadly, the disappearing one may even be your spouse or partner – sadly, it seems that it’s more likely the men who depart, suffering from the bottled-up emotion that our culture seems to think is manly behavior. Sometimes a relationship cracks apart under this stress, and patients realize later that perhaps it did so because it was not healthy. The Fort Knox cartoon strip dealt with this problem very perceptively and succinctly here. Here’s another essay on coping.
Some individuals simply cannot deal with hearing about cancer, almost as if they think it is a communicable disease; or they wait too long to say something and then are embarrassed, and just fade away. Others will surprise you, step up and offer help or just be there for you with a hug or a phone call. There are surprising “lessons in friendship" in a cancer diagnosis. Seek out the cancer blogs to find a circle of friends who will always be ready to offer help, sympathy, or just an “ear” when you need to rant and blow off steam.
The American Cancer Society has a long discussion about how to talk to others about a cancer diagnosis here, including some suggestions for dealing with people who say unhelpful things, and a discussion for friends and family about how to approach a person who's been diagnosed. Here's a helpful list of "10 Things Not to Say" (such as "You're Looking Well," or "You're Looking Terrible.") And here are some tips from the M.D.Anderson Cancer Center that you might want to share with family and friends who want to help, and here from Susan Silk and Barry Goodman in the LA Times. Cure Magazine has a good list here and another discussion here, and here. More on what NOT to say here. If friends or family would like to send a card to you or any other cancer patient, here are some designed by a cancer patient! And here, “At a Loss for Words,” offers more help. Your family and friends could benefit from reading this essay, “How to Speak to Someone who is Suffering."
Whatever you do, do not put off geting that exam!!! Here’s a sad story from someone who waited.
* My journal entry about this: "One of the strangest, and most painful, aspects of this odyssey is the loss of friends and even family who apparently just cannot handle the news. I try not to think that they do not care. Some have sent a cursory note by email and then never again asked about me…others simply vanished. I’ve decided that it is their loss, not mine, but it is still hard to accept. Some I did not have much in common with, but others were people I thought were very close, and could never have imagined their silence.
And then on the other side of the balance are those friends and family who have been there for me, sending mail and cards and never forgetting to let me know they want to hear the news. AND all the extraordinary friends I have encountered on the cancer blogs…I read their news and laugh, weep, grind my teeth, applaud…it is an amazing fellowship. It’s almost like finding a new family, or creating the one you’d like to have!"