You turn to Facebook to share your smallest every day thoughts and crazy night out pictures, but if you have been touched by cancer, whether you are a patient or survivor or have a family member or friend who is, there is now essentially a Facebook for cancer, IHadCancer.com, where you can share your experience and connect with others in worldwide network of support.
The website is the brainchild of Mailet Lopez, 37, the Cuban-born co-founder of an award-winning New York City digital ad agency, Squeaky Wheel Media, and a breast cancer survivor. Users can choose to connect with others nearby or across the globe according to any type of cancer, read each others’ stories and treatment journals and even simply vent by writing cancer an eff-off messages.
We talked to Lopez, and her business partner and friend Anthony Del Monte, about coping with and surviving the disease and building a space for others to find support.
How did the idea for the website come about?
Lopez: In 2008, I was diagnosed with breast cancer and the amount of information you get on the web is overwhelming. You start feeling alone, you don’t know who you should trust or believe. I had great family support and friends, but I didn’t have anyone who had gone through the same thing as myself, who I could talk to and who could guide me and tell me the challenges I would be facing. I was lucky enough to then meet someone who just a year prior had had breast cancer and she was able to provide guidance and tell me about her experience, which was really beneficial. After I’d gone through my surgery and treatment, my doctor started constantly referring other patients to talk to me and Anthony told me I should start a blog and tell everyone about my experience. I saw the power of sharing stories and experiences, so I took the blog further into the website.
Del Monte: The significance of what she did was really tap into a technical apparatus that really plays into the core altruistic support hat’s resident with anyone who’s dealt with cancer, whether they are a fighter, survivor or supporter. One of the most powerful aspects of the site is being able to look at a map [locating other website users] and realize that you’re just not alone. That’s the sheer impact of looking on a map and seeing that there are other people right in your neighborhood going through the same thing.
How did you develop that attitude in your own cancer fight?
Lopez: I had noticed a lump, went to the doctor, who said, ‘It’s probably nothing but let’s get you a mammogram.’ Then I got a biopsy. I got the news of a biopsy result while I was on vacation in Florida. I was with my sister and my cousins. I wasn’t expecting the results to be positive so there was a lot of crying and then I said, ‘Well, I’ve already changed my diet, I exercise.’ I was trying to be as healthy as possible. I can’t mope around in bed and cry. So we went off to the beach, went out to dinner, and that’s what I continued to do for the entire time. There’s no point in being down. Life continues and you have to take it the best you can, deal with things as you continue moving forward.
Del Monte: I never once felt sorry for Mailet because I knew that she would survive because her spirit is so strong and she is so loving. But I told her that she could die, which got her so angry and she’d say, no ‘I don’t have cancer, I had cancer.’ So that’s how that started.
That’s how how the past tense in the website name started?
Lopez: I would constantly correct him and say ‘I had cancer and I’m not going to die.’ For me, it was about allowing myself to believe that and having that resonate to my family and friends so they would stop treating me like I was sick and continue to live their lives and me live mine and not treat me with pity and not with ‘Ay Dios mio!’ It’s a state of mind, looking toward the future, having hope and knowing everything is going to be fine. It’s the kind of thinking you have to have even if you just have three months, because otherwise, it doesn’t do you or anyone else any good.
What have been some of the feedback from IHadCancer.com users so far?
Lopez: We had someone who joined the site and immediately emailed us and said, ‘Oh my God, this is great. My family lives 800 miles away from me. I’m a lone, I signed up and I was able to start connecting with people near me going through the same thing. Thank you so much.’ We have people from 65 countries on the site. We have a 13-year-old signed up and a 90-year-old. From a positive standpoint you want to see that someone with your type of cancer has survived. It gives you hope. And it gives people an outlet to get things off their chest and ask questions that family members wouldn’t know.
Del Monte: What’s really surprising is the amount of caregivers joining the site interacting with other caregivers. People are also going offline o hook up together and physically meet, which is great.
Mailet, how important is a take-charge attitude to surviving and how does the website encourage that?
Lopez: It’s very important. People email me through the website, asking me about all the vegetable and fruit juicing that I did and the treatments [including a Cuban treatment that uses blue scorpion venom] that I tried. I’m not telling anyone what to do, but I’m making them aware of options that are out there from a reliable source, not someone who doesn’t have a face online and you don’t know whether to trust them or not. I’ve had this experience and you can take it, do your own research and go to your doctor informed. Because even doctors don’t have too much information beyond the treatments they themselves are doing. The don’t have the time to really sit with you and discuss options and here you are, making life altering decisions with someone who can only give you 15 minutes.