I have a confession to make: I visit (and comment on) other cancer-related websites. Shocking, I know, isn’t it? I figured since I do, it’s pretty likely that many of you do, too. Thus tonight’s topic is intended to start a conversation, and maybe generate a good resource list, about our other go-to sites.
Please note that here I am specifically excluding online INFORMATION resources (with one possible exception); that’s a bigger, longer topic for another day. The sites I’m planning to list in this diary fall into these two categories: discussion boards, which may or may not be specific to a particular cancer, and personal blogs, in which individuals write about their own experiences with cancer.
I’ll start with the discussion boards. The two I visit most frequently are 1) the “Uterine Cancer” discussion board sponsored by the American Cancer Society under the umbrella of the “Cancer Survivor Network,” and 2) the “Eyes on the Prize” website that is devoted to discussion of gynecological cancers in general by women who are coping with them.
I have no idea how the rest of the ACS’s discussion boards work for participants, but for the most part I have found the Uterine Cancer board to be helpful, supportive, and interesting. Apparently (as I understand it) the section was created at the instigation of a woman with one of the rarer, more aggressive forms of uterine cancer who felt that it was important for there to be separate boards for women dealing with uterine cancer and for women dealing with ovarian cancer, rather than having them all in one group. Unfortunately, this particular woman has since died, but her contributions are still noted by the veterans on the site.
The site’s infrastructure is adequate but not great. Of course, it’s necessary to register for a site username, and that also gets you a site mailbox and friends’ list, which some members use more than others. The discussion board itself consists of messages posted by individuals and the comments in response; they cycle through with the most recent comment putting the whole thread at the top of the list.
Most comments are short and to the point. Most of them are requests for information, while others are requests for reassurance—or both. People tend to keep each other updated about their current status, good or bad, but frequently people do disappear with no way for the others to know what happened. Occasionally people become friendly enough off the site to be able to keep information flowing even when someone is too ill to post herself.
There is a wide range of opinion among the participants regarding the efficacy of various treatments, though most participants on this board are relying primarily,if not exclusively, on medical oncologists. Recommendations and/or inquiries about healthy foods and supplements are common, and some women are pretty well-informed about the options.
The “Eyes on the Prize” is a web-based organization with several components.
Launched on Mother's Day, May 14, 2000, EyesOnThePrize.org went on to incorporate as a non-profit organization in August 2000 and has since received 501 (c)(3) status from the US Internal Revenue Service. Our community includes people from over 80 nations and women with all the reproductive cancers -- cervical, endometrial, ovarian, gestational, tubal, vaginal, vulvar, peritoneal, and uterine sarcomas.
On the main website, there are sections with women’s testimonials (personal accounts), memorials, FAQs, and links to other resources. Some of the resources, such as those pointing to local support groups, appear to be current, but others, such as those referencing books about cancer and related issues, or recent medical developments in gyno cancers, are quite outdated.
I participate sporadically as part of the Yahoo email group under the EOTP auspices. The format is like that of a list-serv, which is one reason I don’t go there more often; I really dislike that method of threading conversations. But, as with the ACS/CSN discussion board, the conversations are supportive, and often the information shared is of high quality.
On occasion I also visit a third discussion board dedicated to the concerns of women with gynecological cancer, but that is housed on a site that primarily focuses on preparing for and recovering from hysterectomy and related gyno surgery; the cancer board (called a "forum") is only one of several sponsored there. I don’t mean to be dismissive, but the quality of discussion on the site is not usually very high, and there is a minimum of follow-through.
As far as I have been able to determine, there is no one out there regularly blogging about dealing with endometrial cancer. (Maybe that’s a niche I should investigate filling.) So that makes reporting on the second category I’d like to address with this diary much easier than it would be if I had breast cancer, just as one example.
But before I do list a few blogs I find compelling—including as well the early suggestions that came from other MNCC members about their favorites—I’d like to give some props to the personal blogs that MNCCers themselves run.
There are three known to me so far. Please do speak up in the comments if you have one you'd like to promote. One is co-hosted by TriSec, here with his description of his surprising diagnosis of colon cancer while undergoing emergency surgery for apparent appendicitis here. Another is the sole domain of jesmith2, who writes on his blog about how dealing with multiple myeloma for the past five years has affected his attitudes toward everyday life. The last one I know about is by smileycreek, who blogs about her experiences as a caregiver for her husband, paradise50, during his treatment and recovery from throat cancer. These are all very fine blogs, and I strongly encourage all of us to visit them and show the authors some appreciation.
Please join me after the jump for a few other recommendations of cancer-related blogs.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
As one might expect, there are quite a few blogs written by women who are coping with breast cancer. (Men can indeed get breast cancer as well, but I have not yet encountered a blog written by a man with this diagnosis.) One that I recently discovered, The Cancer Culture Chronicles, was written by a woman, Rachel Cheetham Moro, who unfortunately died just over a year ago. I chose to include her blog anyway because she has some great, powerful, harsh critiques to make of the “breast cancer industry” (especially the Pink Ribbon campaigns).
I’ll provide links here to two other BC blogs. One, Pink Ribbon Blues, is run by Gayle Sulik, a medical sociologist, who just published a book by the same name. (That reminds me—it’s probably time again for another round of cancer books worth reading, or perhaps a review or two.) Sulik does not appear to be a BC survivor herself, but she is definitely in the middle of the controversies that swirl around treatment. Another blog, the Assertive Cancer Patient, recounts the difficulties of a woman in Seattle who seems to have endured just about everything short of death so far in her struggles to survive (along with her advocacy efforts when she was well enough to do them).
I’ll add one more that isn’t strictly devoted to BC survivorship issues, Women with Cancer, though that is a central focus for the blog, which is written by a BC survivor. I’ll have to read back entries more closely to see how well it lives up to its name.
Thanks to Avila for these recommendations of blogs related to lymphoma. Living with Burkitt’s is a blog written by the mother of a five-year-old boy with this condition. Be the Match is the blog run by the National Marrow Donor Program, which I include here because it includes patient stories (and it is an important treatment program worth promoting).
The last two blogs I’ll include in this sampling really don’t need much promotion, in contrast, since they have a very high profile given their base of publication: the New York Times. But they’re thoughtful and well-written, so we shouldn’t hold their wide circulation against them ;) See Susan Gubar, "Living with Cancer," and Suleika Jaouad, “Life, Interrupted.”
OK, everyone—now it’s your turn. Please share with the rest of us the blogs you like to visit for mutual support, for practical information, for entertainment, for advocacy, for anger and indignation…. The floor is open!