Interview with founder of new social media site for those touched by cancer
I Had Cancer is a new social media network which launched last month and today on Journeying Beyond Breast Cancer, you can read my interview with founder Mailet Lopez .
JBBC: First of all, congratulations on the successful launch of I Had Cancer. Perhaps you could tell us a little more about what led you to set up this site.
M.L. Thank you so much! What led to the start of I Had Cancer was that I was diagnosed with Breast Cancer in 2008 when I was only 33 years old. I saw a real need for people dealing with cancer to be able to easily connect with each others in the same shoes and share their unique experiences. My doctors were great and my family and friends were so supportive, but I still had questions that only someone who had been through what I was going through, would be able to answer. There was no easy way to find and connect to these people online, which is why I created I Had Cancer.
JBBC: How do you think the growth in new social media platforms and social networking helps cancer survivors?
M.L. That is a great question. For a long time cancer was taboo to discuss in society. If someone was sick they would keep it to themselves and experience incredible isolation while going through this awful disease. Finding people who were afflicted with cancer was incredibly difficult. But social media and social networking makes it so much easier to connect with others in the same shoes. You do not have to use your real name or give up identifying information to find others you can bond with over this experience. Online social networking creates communities that are crucial for anyone dealing with cancer.
JBBC: What do you think is the biggest challenge facing cancer survivors today?
M.L. The biggest challenge facing cancer survivors is dealing with the side effects of treatment. The term survivor is relative, you survive cancer and that is great and so empowering. Yet often, there are so many side effects from intense chemotherapy and radiation, as well as other unexpected health issues such as Chemo Brain and osteoporosis. The challenge is to not only survive but to thrive and continue moving forward.
JBBC: I Had Cancer is also aimed at friends and family of cancer survivors. They may be unsure what to say or do for the best for their loved ones. What advice would you give them?
M.L. Simply communicate openly. Offer to help but make it sincere. Ensure to lend an ear to those who might want to talk and get their feelings out. Offer to help around the house and try to be aware of how you act. Most cancer survivors and fighters do not want pity but a real friend. But the site is also available for them to be able to connect with other supporters who know what it’s like being so close to the disease. Supporters themselves need support and connecting with someone who’s been there can help out.
JBBC: I am interested in the experiences of survivors transitioning from active treatment, how was that experience for you? What kind of support do you think cancer survivors need when they finish treatment?
M.L. They need closure – they need therapeutic support that can only come from a fellow survivor who can help in the steps necessary to get back to your routine. You also need to face, understand and accept what you just went through. I found that journaling the experience as tough as it was helped me put it behind me. Cancer will always be out there, use your experience to help others because in the process you’re helping yourself. That’s what I did. But you don’t have to go to this extent just sharing your experience will help and IhadCancer.com lets you do this easily.
JBBC: Part of your site includes the opportunity to write a letter to cancer. If you were to write a letter to cancer, what would you say? What did you learn from your own experience of cancer?
M.L. Here’s a copy of what I told cancer: “You put me and my family through the wringer and we prevailed. We will continue to do that. I do want to thank you because it was me you tried to take and not them. I wasn’t afraid; I knew I could take you on. In the process we learned a lot especially how much stronger we are then you.”
I learned that having some form of support to be able to fight this head on is crucial. That’s why I think IHadCancer.com is going to be a really valuable resource for anyone touched by cancer.
JBBC: Can you share a little of your long term plans for I Had Cancer. You are at the start up stage now but how do you see it developing over the next few years?
M.L. Our ultimate goal is that the minute someone is diagnosed with cancer or someone they know is diagnosed they think of IHadCancer.com. They’ll know that they can search for someone who’s been in a similar situation and that they can find support immediately. They are not alone in this fight and there is a community of really great people ready to connect with them.
JBBC: Thanks for taking the time to share your vision of support for cancer survivors Mailet and continued good health and success to you.
I can’t help wondering if we really need another site for cancer survivors to share their story. Sorry but I don’t see that this site brings anything new to the table for us IMO
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Although I tend to agree with Iris, I still found Mailet’s story inspiring
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Iris, it’s a free market – I dont’ think we need to put a limit on how many sites we have – if this one adds anything of value to survivors then there’s no harm in it.
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I have a problem with the name I had cancer – had? what about if you had and still have it? Are you excluded? Some of us are living with mets and feel excluded enough as it is. I would love to be able to say I had cancer – past tense – but it’s a case of I have cancer (present tense ) for me
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Hi Tom, there is a reason for the name – mostly because the majority of our users want to look towards the future and think of being cancer free at some point, but the name also means we had cancer in our lives. Since the site is for supporters, fighters and survivors – these people have had experience with cancer. I had cancer in my life because I was a supporter to 6 family members out of which two survived, have I HAD Cancer? – no. I hope this clarifies the name. It is not meant to exclude anyone, as a matter of fact the opposite is the point of the site, to unite everyone who had cancer in their lives.
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When I first got diagnosed with cancer I used to go on these kind of sites all the time, but they never helped me. What has helped are blogs like yours and others that you regularly feature on your weekly round up – the so called cancer rebels – these cancer ladies write the most intelligent and rocking web material I have ever read – that’s where it’s at for me these days, not another site with the same old discussions.
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Dont’ know why there is so much negative responses to this interview – I admire Mailet and what she is trying to do for cancer survivors. I am looking forward to checking out her site and other stories of cancer survivors there.
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It is so important to be able to tell your story and to have it heard and validated – i think this is a great idea – well done Mailet!
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Nice interview. It is true that only another cancer patient/survivor call it what you will can help you answer questions and help you feel less alone.
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I looked at the site but wasn’t impressed. For a start it says something about patients sense of “seclusion” – shouldn’t that be exclusion? I know I am nit picking, but words used incorrectly like that put me off…as does the term cancer fighter – which is all over the site. I wont’ be joining that’s for sure.
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Sorry, but I have to agree that we already have a saturated market when it comes to this kind of thing. I wish her good luck, but I won’t be joining it – sticking to my blogging community for now.
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Honestly can’t understand where all this hostility is coming from – is everyone having a bad hair day today (sorry bad chemo joke!) there is room for everyone – and looks like there are enough people already signed up to this site who seem to think it’s worthwhile.
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I just looked at the site and I think it’s good – I like the letter to cancer bit – i don’t understand people’s complaining either!
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I enjoyed this interview with Mailet – she is a beautiful girl who is doing something positive with her experience of cancer- i wish her all the luck in the world.
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Yawn! Another new site, another new book…whatever…
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I think it’s a great site and I am going to write my own letter to cancer today and post it there. Thanks for letting us know about I Had Cancer and Mailet’s story
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This girl is an inspiration to us all! Well done!
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To all those detractors, there is room on the world wide web for everyone – if you don’t like this site, then don’t bother with it – your negativity wouldn’t be wanted there anyway!
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Welcome to our patient advocate/survivorship group. Your efforts are much appreciated. Let me know how I can help.
Brenda Coffee
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I must admit I was and still am a bit skeptical about this site, mostly due to the name, “I Had Cancer.” Honestly, the name is a bit of a problem for me. I have friends who still have cancer. I don’t even know if I am “done” with cancer. Having said that, just as there is no one way “to do” cancer, there is probably no one way “to do” these sites either. I appreciate such sites because they are another place for people to turn to and people are free to pick and choose which ones they like. I also appreciate how such sites are places to begin dialogue and as a blogger, I love interaction and dialogue! I’ll be checking into this one a bit more soon. Thanks for the interview, Marie, and good luck to Mailet.
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I know as someone who was diagnosed a month after her 23rd birthday, 4 months into her first job, and 1000 miles away from parents (who proved to be wholely unsupportive) – I am always looking for more support. That rush of support everyone talks about just didn’t happen for me, largely because my friends had never dealt with a friend with a lifethreatening illness and they all had moved far away anyway. I am involved in all the groups, but find it hard because even in young adult survivors groups, I’m always one of the youngest. Each young adult cancer social network has a different feel- I go to different ones depending on how I’m feeling and what emotional need I need fulfilled that day. The more the merrier, I say.
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Being this young when you are diagnosed with cancer can be very isolating indeed. I was 35 but like you, I didn’t get that rush of support at all. It is only now years later, that i have found the support i needed back then, online. Thanks so much for your comment and continued healing to you.
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What an inspiring post, Marie! Truly the IHadCancer movement is the wave of the future. There’s nothing like social networking to raise the spirits and calm the mind. I know. I’ve been there. And appreciate it greatly. I think I’ll sit down now and write my letter to cancer. I may not be as kind as Ms. Lopez.
Jan
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Will you share your letter on your blog Jan? Would love to read it!
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