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Cancer Blogs and Bloggers

Blogging on BloggersOver the past year, National Public Radio’s blog and radio series called “My Cancer” has been an amazing portraly of life living, and dying, with cancer. Called NPR: My Cancer, it is frank and open, discussing the daily aspect of life with cancer.

A lot of times, I sit at my computer, trying to figure out what to say on the blog. Writing this certainly forces me to stop and think about my cancer, what it has done to my life and what has happened to all of you out there. It makes me confront it every day.

It never really goes away, certainly not far away. The neuropathy — the tingling in my hands and feet — is a constant reminder that it’s in there. While this is a week off from chemo and I feel pretty good, I know that I start the next cycle Monday, and that’s weighing on my mind. I am certainly dreading that.

But there are just some days where I don’t want to confront the big issues — the Cancer with a capital “C.” I don’t want to think about it. I don’t want to think about how my life has changed, how my body has changed. I don’t want to think about what I have lost or had to give up because of this disease. I don’t want to think about my own mortality.

No, some days, I just want to have a normal day. Worry about work, bills, traffic — the usual stuff that makes up life. I guess this is just a long way of saying that I don’t really have anything more profound on my mind today. It’s just another day.

Except, of course, it’s not. And we all know why. There are good days and bad days and days that fall in between, but there are no more “just-another-days.” You can escape for a minute, an hour … even a couple of hours. But it never, ever, goes away.

Living with cancer changes your life and your way of thinking. The thought process turns inward rather than outward, and often you feel victimized not just my what is happening to you inside, but by those who are treating you, helping you, as well as family, co-workers, and friends. “They just don’t understand” is a thought than runs selfishly through your brain, but you can’t help it either.

CNN Health reported on a teenager blogger with cancer, Miles Levin, and how he has connected with so many through his cancer blog.

He e-mailed with a woman in the Philippines, then another in Brazil, with teens dying in the Midwest and mothers losing children in the Northeast. His thoughts were aired on the radio, and on the cover of the Detroit News. He has become a magnet for people searching for ways to relish the simplicity of a single good day.

Chemotherapy has made him gaunt, even sallow, though he smiles from ear to ear, and his baldness has given him a Dalai Lama look.

Even the Dalai Lama himself might be brought down by something as mundane as cancer or a fire from a worn-out extension cord, Levin muses on his blog. And in the randomness of life, firefighters would race in to rescue him, “not just because he’s the Dalai Lama, they would do the same for you.”

There are very interesting aspects about blogging about cancer and other diseases that differs from “normal” blogging.

Some Diseases Are Temporary. Cancer Can Be Permanent. Then What?

Not all diseases are forever, and not all can be cured. In most cases, the disease ends or the patient. If the disease ends, should the blogger keep blogging about being a “victim” or “patient”? Shouldn’t their blogging move on as their life has? What happens to the blog?

It’s important that the blogger decide for his or herself if and when the blogging is done, and whether or not it has enough value to keep the blog on the web when it’s time for them to move on and do something different.

It’s also important for the blogger to decide what will happen with their blog if the worst happens to them. Will someone else take their blog over? Who will tell the world of their passing on the blog? Is it important that the blog remain as a symbol and historical record? If so, what happens to the blog?

These are the thoughts that rarely cross the mind of a typical blogger. For a cancer blogger, these are often the earliest thoughts after starting their blog.

Freedom of Expression, Sharing, or Teaching?

We all blog for different reasons. Sharing your illness with the public can be done because you need an outlet for your thoughts and feelings, indifferent of who is reading. Maybe you just want to share with others so you won’t feel so alone and gain support from your readers.

Or maybe, the need to blog about your disease is to teach and help others so they will understand the steps in the process and the good and bad decisions made along your path.

Before beginning your blog about your disease, be clear on why you are doing this. It can change and evolve over time, but clarify your needs for blogging your disease, and let it be for you and not to make others happy. You’ll find more fulfillment and will continue longer.

Comments On or Off?

In Blog Comments: On or Off and Why, I wrote about how the author, blogging about his illness, was blogging with his comments closed. While some find that irritating, not meeting the real definition of a blog, for him, this was the right choice. Faced with tons of sympathy and advice in the comments, words he didn’t want nor need as part of his treatment and recovery process, he lived for sharing not feedback. Others thrive on the comments, building relationships and connections with others.

You have to decide if you will allow comments to be open or not? And if they are, consider having a strong comments policy about what you will allow. It’s your life, and it’s your blog. You control the conversation.

Cancer Blogging is All About Risk

Starting a blog for the typical blogger is risky, but starting a blog about your personal battle with cancer is more than risky. It’s terrifying.

Admitting you have cancer to others is part of the first steps in the battle with cancer. Admitting it to yourself is even harder. Writing down the words “I have cancer” can be one of the hardest things to do, especially when those words are about to be published publicly – all secrets revealed.

Blogging about SEO is easy. Blogging about how WordPress works is even easier. No mysteries there. Just dig in and find the answers to the problems you are having and then write down the solutions. Blogging about cancer isn’t easy. There are lots of problems, some big, some small, many overwhelming, and there are no answers to easily find and no quick solutions.

There are now more resources than ever on how to treat cancer, and a lot of it is crap, but how do you know? Who do you trust? What works for some won’t work for others? Where are the experts on your cancer? Where do you go? Who do you turn to?

Blogging about your search for answers and the issues of dealing with the complex and the mundane as your life gets more complicated and the pressure of time running out puts even more stress and strain on your life – it’s much easier to blog about raising children than dealing with cancer.

It takes risk. It takes courage. It takes determination. It takes perseverance. We “normal” bloggers have a lot to learn about blogging from cancer bloggers when it comes to taking risks.

Gives a New Meaning to the Word “Support”

While many bloggers blog to find new relationships and connections outside of their neighborhood and small world, cancer bloggers may be open to relationships that go even farther, finding like-minded individuals and cheerleaders, as well as the connections they need to help them through the day-to-day struggles of dealing with their illness when those closest to them just “can’t deal” with it anymore.

The anonymous nature and yet amazing openness of the web community is on full-tilt display when it comes to bloggers.

There is risk when you open up your intimate, and sometimes ugly and painful, life with cancer. You can be the target of ridicule, or merely the subject of plenty of “stupid questions”. More likely, you will find unconditional love and support unlike you may have ever known.

That, in and of itself, is frightening to many who have never known such care and compassion. While a “normal” blogger is worried about getting found and building readership and traffic, a cancer blogger might not want to be found. They might just want to express their thoughts publicly and let that be enough.

Opening your life to the public will bring attention and hopefully connections. Make sure you are ready and open for the experience, and you set the terms and conditions on what you want out of your blog when it comes to support.

Thank You and Appreciation Are Everything

While many bloggers will blog about news, day-to-day life, and the little things they uncover in the world around them, cancer bloggers are often the first on the scene to say thank you and show appreciation for each day and each person, as well as each moment in their lives.

In 2008 by Sue123, she shares just a few of her appreciations for the past year:

Reflecting on 2007:

I made it thorough having part of my liver removed.
I made it through 28 radiation treatments.
I made it through taking chemo therapy orally 21 days every month (still doing).
I made it through 4 cat scans, 1 pet scan, EKG;s, Echocardiograms and many, many blood tests and Dr. appointments.
I made it through 2007’s beautiful Spring, Summer, Fall, and Winter, enjoying the changes of each season.
I made it through my son’s (Amanda) wedding shower and wedding.
I made it through lupus without any complications.
I am thankful that I am still alive.
I am thankful for being able to see and visit with many of my distant cousins.
I am thankful for all the wonderful memories of our families Sunday breakfast’s.
I am thankful for my loving, kind Bill who has done everything in his power to make me happy and safe.
I am thankful that Bill was by my side all year as well as my son’s, Amanda, my friends and sister Carol.
I am thankful for my many wonderful friends…

Cancer Blogs

I did a fast crawl through the web and to find out who was blogging about cancer from an intimate first hand experience and found some treasures.

Blog for a Cure offers free blogs to people blogging about cancer, and is open to any type of blogger, joining the ranks of many other cancer bloggers.

Personally, I want to thank all of the cancer bloggers I’ve read. I’ve learned to face the world with more trust and openness because of the example you set. I’ve learned to be more honest in my blogging, and while such honesty is risky, the rewards are worth it.

And to all surviving with cancer or cancer-free, here’s to a new year with improved research and care for all types of illness.

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Copyright Lorelle VanFossen, the author of Blogging Tips, What Bloggers Won't Tell You About Blogging.

15 Comments

  1. Posted January 14, 2008 at 6:59 pm | Permalink

    Wow…thanks so much Lorelle for blogging about this. Given that I have a more impersonal attitude related to cancer (focusing instead on the scientific aspect of it), sometimes I forget that other people too have gone through the same thing and have lived through it.

    It’s not that I don’t encourage optimism. I do. In a battle such as this, you have to have faith in the patients themselves. But since I’m waging my own personal war against cancer (in terms of doing what I can research-wise), whatever feelings I have in respect to sympathizing with their plight feel empty, like I’m not worthy of it.

    Maybe I’m saying. I will see to it I’m part of the solution. Maybe one day I’ll be able to cheer the same way as other people have. But for now, it’s like there is no room for feeling what I’ve lost, only what I’ve promised.

  2. Posted January 14, 2008 at 7:19 pm | Permalink

    @ Edrei:

    I adore everyone who has as much passion as you do, especially when it comes to healing and making a difference in the world. Edrei, you are one of my heroes, and I know you can do anything you put your mind to. I’ve seen the proof.

  3. Posted January 15, 2008 at 2:20 am | Permalink

    Thanks so much Lorelle. I’ve learned so much from this post and from your previous posts three of them I read today.

    I placed your blog in my netvibes so that I will get updates from you.

    Thanks.

  4. Posted January 15, 2008 at 3:28 am | Permalink

    One year ago I blogged about lymphoma.
    Yes, it is a great problem of Humanity.

  5. Posted January 15, 2008 at 7:11 am | Permalink

    When you read about those that are facing the uphill battle of cancer, it is pretty humbling. Last night, I was really down about my own blogging, the amount of time I was spending, and that lack of rewards I was seeing. My eyes welded up with tears to see how my issues paled in comparison to those who are fighting for their lives and have the courage to share that with the world.

    It reminded me of why I started blogging in the first place. To touch and to be touched by other people. Thanks for this post today. I am not sure how I am going to process what you wrote and why it upset me so much, but I am going to walk away from my blog today to look inside.

    G-d speed to all of you who are battling cancer.

  6. Posted January 15, 2008 at 10:36 am | Permalink

    @ Anna:

    I’m eager to read what you have to say. And glad to have touched you in this way. Makes blogging worthwhile, doesn’t it? :D

  7. Posted January 15, 2008 at 12:45 pm | Permalink

    Lorelle, This is beautifully done and so important. Thank you for taking the time to research and write this for all of us.

  8. Posted January 18, 2008 at 8:44 am | Permalink

    Its really a nice post.

  9. Posted January 24, 2008 at 7:17 pm | Permalink

    Lorelle,

    I was thrilled to see my blog listed on your list, so first of all thanks for that. I admit that I’m one of those cancer-bloggers who enjoys traffic :)

    Your points about the blog evolving as the person’s journey through the disease are something that I’ve thought about a lot and often. The best thing that can happen to me is to have no cancer drama in my life, but then what happens to the blog? I knew that I didn’t want to delete it or let it languish with infrequent updates. If nothing else, I want to hold on to a place where I can still post about the cancer if and when I ever need to do that.

    I realized that when I wasn’t posting about my own cancer experience, I was drawn to the creative efforts that Survivors embark upon… the books, the films, the paintings, etc. that we create in order to deal with this life-altering experience. So ( for now at least!) that’s more-or-less my niche within the breast cancer blogging community.

  10. Posted February 7, 2008 at 1:43 am | Permalink

    I know a blogger who diagnosed as a cancer patient and spend a lot of time blogging, it may be considered as Assistant psychotherapy.

  11. cancervisa
    Posted April 15, 2008 at 11:16 pm | Permalink

    L,
    Please change the name of cancervixen to cancer visa, I have had to change the name of my blog for legal reasons. Please don’t let random house come after you for copyright enfringement over the name cancervixen. Please change ASAP!

  12. Posted April 16, 2008 at 9:15 am | Permalink

    I will change the name, however, there is nothing they can do against me. YOU used the name. Thanks for the warning, though. And sorry for your situation. I do hope things improve.

  13. Posted July 3, 2009 at 2:30 am | Permalink

    Wat you’ve said is absolutely right. Admitting the words “I have Cancer” is one of the hardest thing to do. Really. That too in a public forum or a blog which is read by millions around the world.
    What the readers can do is only provide you their advice & suggestions. But we must live our life to the fullest. Stand up, & Fight against it.

    Thanks for the wonderful post.

  14. Posted July 6, 2013 at 10:19 am | Permalink

    In April 2011, a high profile blogger, YU Juan from China, died of breast cancer aged 32. She also left behind a baby. YU Juan got a PhD degree, had studied in Norway, and she was an outstanding lecturer in a top university in China, Fudan university.

    YU Juan blogged about her cancer with humour and courage. Two things stood out: she blogged about how she was deceived by a quack, and even gave up formal treatment in the hospital as a terminal cancer patient. She was taken to a remote countryside to try out the ‘magic’ with the quack. When she realised the tragic and stupid mistakes that she had made, it was too late. She blogged about her mistakes and warned people about the quacks, and how cancer patients are deceived so easily. She’s young, intelligent, well travelled and studied in the west, and in the age of the Internet, she was so desperate about miracles and survival that she was trapped by the quack. The quack used the combined method of ‘starvation and unique personally brewed Chinese medicine’ to ‘treat’ her and a few.

    YU Juan blogged about this particular mistake in a year’s fight for survival — she alerted the public and she was ashamed by her mistakes.

    Second: how could a highly educated young person have been so easily deceived in an age of information? Some scholars have tried to analyse the root of this tragic loss. Is it because the belief in a quack has been so deeply rooted in the Chinese culture? Was it the outcome of typical oriental education?

    In her blog, YU Juan also published a series of posts analysing the possible causes of her getting cancer (as she was a perfectly healthy young person with no genetic link to breast cancer), from pressure, competitiveness, irregular lifestyle, toxic food……This series is still inspiring to read today. Young people especially were going through soul searching after her death.

    Her famous saying in her inspiring blog includes: At the junction of life and death, you’ll realise that any overtime work, pressures in life, the needs of buying car and house are all pointless. If you’ve got the time, please spend some good time with your kids. Buy your parents a new pair of shoes instead of saving the money for your car. Don’t exhaust yourself with work so that you could buy a bigger house. As long as you’re with your loved ones, even in the most humble place, you’ll feel warm.

    YU Juan’s blog is 活着就是王道 (To live is the truth) and her book published after her death is called “An unfinished life.”

    Reference: News report in English

    • Posted July 7, 2013 at 10:57 am | Permalink

      Thank you for sharing this wonderful story. I’m always amazed at how people use blogs to help not only tell their story but change the world. Thanks!


4 Trackbacks/Pingbacks

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