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Blogging Cancer

Globe and Mail Update

"We are redefined by cancer the disease. And then we are further redefined by cancer the concept. Survivor. Warrior. These ideas aren't mine. I may have physically survived cancer (touch wood) but there is a wasteland inside me. Not everything survived. A lot of what was important didn't. And it wasn't replaced by anything else."

Those are the words of Alicia Merchant, who was diagnosed with ovarian cancer three years ago, when she was 23. In between working three jobs, she also writes a blog called Bomb in My Belly. (Subtitle: "Bringing New Meaning to 'Bombshell' Since 2003.")

Sometimes hilarious, sometimes heartbreaking -- often both at once -- Ms. Merchant's blog is a beautifully unvarnished picture of life as a young person with cancer.

Ms. Merchant -- alias Louise Anonymous on her blog -- was online earlier to take your questions. Your questions and Ms. Merchant's replies will be posted below.

Ms. Merchant was one of the 60 people profiled for Saturday's story in the Focus section, A Day in the Life of Cancer. You can read her part of the story here.

Ms. Merchant moderates a web site for cancer patients, wikicancer.org. For newcomers to her blog, she suggests reading Things I Haven't Learned From Cancer.

Editor's Note: globeandmail.com editors will read and allow or reject each question/comment. Comments/questions may be edited for length, clarity or relevance. HTML is not allowed. We will not publish questions/comments that include personal attacks on Globe journalists, other participants in these discussions, questions/comments that make false or unsubstantiated allegations, that purport to quote people or reports where the purported quote or fact cannot be easily verified, or questions/comments that include vulgar language or libellous statements. Preference will be given to readers who submit questions/comments using their full name and home town, rather than a pseudonym.

Rasha Mourtada, globeandmail.com: Welcome, Alicia, and thanks so much for coming online to take questions from globeandmail.com readers. To get us started, I wonder if you can share a few thoughts on your cancer blog -- how has it helped you and what purpose do you feel it serves?

Alicia Merchant: Hi Rasha, thank you for having me. One of the main things my blog has allowed me to do is connect with other young cancer patients. Initially I set up my blog at the same time as a couple other girls who were going through or just completing treatment for ovarian cancer. We were frustrated by the lack of resources for younger women affected by ovarian cancer; it seemed impossible to find any local support community for women our age with ovarian cancer. We also found ourselves censoring ourselves on traditional cancer support boards. We found it difficult to be honest about the reality of our cancer and our experiences -- there is a lot of pain and anger connected to a cancer diagnosis, especially a gynecological cancer diagnosis, and it was difficult to express that in the forums we were already using. Blogging allowed us to connect with other women in our situation and form that community we were lacking. I think that's the most important thing I've gained from blogging -- a community of women who understand where I'm coming from.

Roxanne Rollings, Caledon: Hi Alicia, I'm a 20-year breast cancer survivor who just found out that my cancer has "recurred." I feel just as stupid about the disease as I did way back then. Do you have any suggestions as to research resources and key questions I should be asking?

Alicia Merchant: Hi Roxanne, I'm sorry to hear about your recurrence. I think one of the most important things for you to have is some kind of patient advocate. When I was initially being diagnosed, there was a nurse at my university health clinic who basically took on the role for me. She made sure appointments were made promptly, acted as a go-between for the various doctors I was seeing, and she helped me come up with questions to ask when I was seeing my oncologist. She also answered any questions I had with regards to my treatment. If you can find a nurse from your local health clinic to act as an advocate for you, do so. A nurse can help you navigate your treatment with a lot more ease.

If you don't already know, you should ask your oncologist about your cancer. What kind of tumour is it? What are your treatment options and which ones are most successful for women of your age? What are the side effects of the treatments available to you? Are you eligible for any clinical studies?

I would also suggest you get in contact with someone at the Canadian Breast Cancer Foundation. The CBCF will definitely help you come up with questions to ask about your recurrence.

Becky Haig, Barrie: Hello! I have to admit, I was so intrigued by your story. Not that it's a nice thing to have in common, but I was diagnosed with stage 3c ovarian cancer when I was 26 years old. I have not actually met anyone who is younger than me. I can't begin to tell you how important it is to someone like me to see you're still here three years later. I just started chemo yesterday for my first recurrence - I'm only seven months out from my last chemo. I can't help but think this is it for me. The statistics on this disease are so horrible. I know they are just numbers, but how do you not get caught up in them? Thank you for sharing your story. I'll be sure to check out your blog and I wish you many more years of good health. Take care, Becky

Alicia Merchant: Hi Becky, I'm sorry to hear about your recurrence as well. I don't really know how to answer your question. I don't know that there is a good way to not get caught up in the numbers. I know it was something that I struggled with a lot in the beginning. The one thing that really helped for me was my gyn/onc telling me to ignore the numbers, that the numbers didn't adequately reflect my situation. The statistics are based on women older than us -- recent studies state that younger women survive ovarian cancer better. Your numbers aren't the numbers of ovarian cancer in general. Try not to focus on the numbers, try to focus on making it through the day.

One of the girls who started blogging at the same time as me went through several recurrences before she was finally proclaimed to be cancer-free. Her blog can be found here. She's funny, smart, and cynical, and her story is amazing.

If you ever want someone to talk to, feel free to email me. You can find my address on my blog. Good luck, Becky.

Mike S, Pickering: I got the sense from your blog you were concerned about your family discovering your online persona. What changed your perspective on that, and I'm curious if your family has read it and what they think of it (or do your rules of never being allowed to bring it up still hold?).

Alicia Merchant: Until recently, no one in my "real" life even knew I had a blog. Over the last year, friends have learned about my blog though none of them knew how to find it. It wasn't until Erin Anderssen approached me about the cancer series that I even considered going public with my online persona to friends and family. It was something I had to think about before I agreed to do the interview. I was given the option to keep my blog private, but I declined.

Having my family read my blog was (and is) a big fear of mine. We don't talk a lot about the emotional fallout of my cancer diagnosis and half my blog discusses this very thing. My cancer diagnosis brought up a lot of issues with my family -- it's hard to deal with everyone's pain. We generally think of our state of health as a private thing, but cancer makes it rather public. You lose a sense of the personal. I wanted to maintain some privacy and so I set boundaries with my family as to what we could and couldn't talk about.

My younger sister (who I live with) reads my blog. She said it makes her cry sometimes. My mom didn't even know about the article until after it ran; I only just told her. She's asked if she can read my blog, but I haven't decided if I'm okay with that. I'll probably let her, but the rule of not discussing blog topics (unless I bring them up) will stand.

JR, Montreal: Love your blog. Thank you so much for posting. When you are feeling angry and frustrated, what gets you through those times? What is the best way (or ways) one can support someone who is going through - or has gone through - this whole evil cancer enchilada?

Alicia Merchant:Thanks, JR. I wish I could say I dealt with anger and frustration in some constructive way, but I can't. I usually snap at people, I become sullen and untalkative, I avoid social situations. I know now that these moments will pass; it takes too much energy to be angry and frustrated all the time. I have a dog and she probably benefits from these moods -- I tend to take her on long walks. She's good company and she never expects me to explain myself.

I don't really know how to support someone who is going through or has gone through cancer. I tend to push people away unless I want them. I guess the best thing to do is recognize when a person wants to talk and then listen, don't offer platitudes about being hopeful or optimistic or how the cancer is a blessing or lesson to be appreciated, and just be there. Don't wait to be asked for help, just help. Offer to accompany someone to doctor's appointments, go out for coffee, drop by with a book. I hated having to ask someone to do anything cancer-related with me, so I just wouldn't ask. I appreciated the people who were just around without my asking. I appreciated that they made it so I didn't have to ask for help.

Jim Sheppard: Alicia, I read with interest this entry in your blog: "Sometimes I react in a way you might not expect when the cancer thing comes up. I do talk about it quite a bit these days and I may seem like I'm completely comfortable and all right with it. But sometimes I'll do things like burst into tears, even if you don't see it coming. Or I might get angry and defensive and contradict everything you say. Or I'll give really short, non-committal answers to your questions to avoid bursting into tears or being angry and contradictory. Just, I don't know, don't take it personally."

I've seen close friends die of cancer. My dad fought a successful (for 30 years) battle against lung cancer. But I still don't know what to say to someone I care about when I learn that he or she has cancer. Any advice about the right way to discuss this?

Alicia Merchant: I wish I did have advice about the right way to discuss cancer (I keep coming up with answers only to delete them). People have asked me this before, and I never know how to answer. You could react the same way on two different days and I would respond differently each time. And what I want to hear might not be what someone else wants to hear.

Generally when the subject of cancer comes up with people who don't know I've had it, I've always appreciated the people who take it in stride.

Rasha Mourtada, globeandmail.com: That's all the time that we have for today. Thank you, Alicia, for joining us online. Are there any last thoughts you'd like to leave us with?

Alicia Merchant: I just want to thank everyone for their incredibly thoughtful questions. It was a challenge to answer them -- unfortunately there aren't any hard and fast rules for addressing the subject of cancer when it comes up in our lives. Just remain open and supportive. And if you aren't sure how to appropriately deal with any given situation, just ask. Thanks again.

Rasha Mourtada, globeandmail.com: To our readers, we're sorry we couldn't get to all of your questions today, and, because Ms. Merchant was here to talk about her personal experience, she wasn't able to answer questions relating to policy or medical issues. We encourage you to participate in our cancer discussions with Lisa Priest ,who will be joining us on Friday, and Andre Picard, who will be joining us on Monday.

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