Monday, March 06, 2006

RedToeNail.org


In early 2004, Dr. Phil Berman discovered he had lung cancer with metastases throughout his body. A radiologist himself, Dr. Berman has survived through bad days and good with, as far as I can tell, his personality, humor, reason, and compassion intact. Also his sense of style: his site, "RedToeNail.org," got its name from his resolution to paint one toenail red for every year of survival. So far, he's up to two.

In its creator's own words, "RedToeNail.org is an online community designed to help people whose lives have been touched by cancer. Whether you are the one with cancer or it’s a friend or family member who you are caring for, RedToeNail.org offers a supportive online environment where you can share your experiences via an online journal (blog), learn from others and find support for the challenges you are facing. RedToeNail.org members include cancer survivors, family members, doctors, nurses, researchers and others who are actively involved in the fight against cancer. RedToeNail.org is also an online resource providing members with the latest cancer news & information as well as additional resources for people seeking help and support."

Dr. Berman and I have corresponded off and on for a while and I think he's created a very important resource for a lot of people--not least because of the understanding and credibility he brings to it as a cancer survivor himself. His kind review of Mom's Cancer on his blog, http://berman.redtoenail.org/, gives me a handy excuse to recommend his site and work to anyone touched by this disease and looking for others who will understand. If you think that description might apply to you, it probably does. Check it out.

3 comments:

Lynne said...

Brian, I didn't know about this blog site, thanks for the info...

elmdcl said...

i have been diagnosed with small cleaved cell follicular lymphoma. i can find very little infomration on it. I have been referred to a doctor who is okay but a medfical center that i absolutley hate. the only agreeable person is the paking attendant.The bills from this hopital are impossible to understand and requests for expanations fall on deaf ears. I refuse to return to the hospital. As of my lst visit my cancer was stage one and not active and not being actively treated. The doctor said just watch and wait. If anyone out there has a similar diagnosis can you let me know what you have been experiencing? What should i expect? What would you do if you were in my shoes. I know that i need to look for a new medical center.

BrianFies said...

Lynne, you're welcome. Elmdcl, I hardly know where to begin. I'm not a medical expert and can only point you toward the Internet for information about your lymphoma. Try to sort out good information from garbage; I recommend sticking to sites from reputable organizations such as the American Cancer Society, Johns Hopkins University, etc.

If you feel you're not getting the right attention or respect you deserve at your current medical center, certainly look for alternatives. One thing we learned quickly with my mother's illness is the need to be aggressive and assertive. No one is going to look out for you except YOU. If you have a primary care physician, maybe you could have a heart-to-heart talk with them about your concerns and see what he or she says. Depending on where you live, there is probably a cancer support or survivors group around, and those people would probably be your best source of information about who provides good care and services.

I do understand the frustration of dealing with medical people who don't seem to be focusing on your needs or taking your problems seriously. That happens a lot. All I can say is that when you find one that does, it's worth the effort. Take charge.