Cancer Blog Links Reflections

Sunday in Beaufort

Sunday in Beaufort

“Cancer Blog Links” is easily the most popular feature of this blog, typically getting 2-3 times more traffic than any other page.  I was wondering why this is true.  First, I think, it is developing into a remarkable and unique resource.  It is possibly the largest resource of its type on the web.  Part of its popularity must be the instinct of those with cancer, or their families, to make contact, even the electronic kind, with someone else who is experiencing the same cataclysmic events.

Cancer blogs usually have a rawness, an emotional openness that is hard to find in a conversation or other typical social situation.  We sense that the experiences revealed in cancer blogs are happening to real people, people just like us, in real time and in real places.  And despite the immediacy of the event there is the safety, sitting behind our computer monitors in the corner of a kitchen or study, the insularity of distance.  We can choose or not choose to interact, to share our pain.

Fortunately for many of us there seem to be enough fellow travelers out there that dare to share, to express empathy and support.  It is, after all, comforting to know that there are others out there that truly know what we are going through.  To know that we are not alone in our enduring. The intention of family and friends to provide sympathy and understanding is most always well-meaning and heartily appreciated.  Still we may feel alone because we sense that that the precise nature of what we are going through can only be felt by another suffering the same fate.

Many bloggers, at least, begin with the need to let others know, as much as is possible, the pain, despair, joy, gratitude, relief, and weariness that is their new normal, their new daily life.  But then later there is that other impulse – the suspicion that, in writing a blog dedicated to our personal fight with cancer, we can make something of value to others.  We can create something to bolster and reinforce the struggle of others with our disease.  And finally there can be something said about the sense of community that developes through all this interaction of friends, family, and strangers.  The strength of numbers.  When you are feeling down, others might lift you up.  And when those others are down, you can return the favor.

Analyzing the blog list is still a future project.  As I suggested before, the blog community probably does not accurately represent the broader cancer community. By far most of the bloggers on the list are female.  It may be that many men with cancer try to continue working through their treatment. But more probably men are not so disposed to sharing widely their deeper fears and hurts with strangers.  It would be interesting to compare the wider world of blogs in terms of the sex of the blogger.  I suspect the disparity would not be so great.

Breast cancer survivors compose the largest single group of bloggers on the list.  Certainly the incidence of breast cancer is significant but not so much as the ratio here suggests.  I think that the answer here lies in the tremendous political and social consciousness that the breast cancer movement has nurtured over the past two decades.

The high incidence of Hodgkin’s lymphoma bloggers lies, as I have suggested before, in the relative youth of that population and their familiarity and comfort with using electronics for social networking.  Also responsible is the rise, on a smaller scale, with the movement to focus on cancer as not just a disease of older adults, the “I’m too young for this” consciousness.

The paucity of other cancer blog categories is harder to explain.  People with extremely aggressive cancers such as pancreatic might be just overwhelmed by the rush of diagnosis, treatment, and short prognosis.  I have found small pockets of rare cancers that seem to find each other: cancers of the appendix, adenoid cystic carcinoma, sarcomas.  The small number of lung cancer bloggers, however, remains somewhat puzzling.

Part of the disparity lies perhaps in my success at finding their blogs.  As my search abilities improve, I hope that the list will begin to look more balanced.  I do rely on you readers to steer me in the direction of more and more cancer blogs though there does seem to be a reluctance to suggest the names of other blogs.  I slowly pore through my list of blogs and, in turn, the treasures that other blogrolls reveal.

I have very loose criteria for including blogs on them list.  I like for them to be current but again that is relative.  Some bloggers take a break sometimes, not posting for months at a time.  If they have posted in the past six months I will probably still include them.  If the blogger has not posted in a year, there is the chance that they have died and I usually don’t include them.  If the more recent posts are about the funeral so that the situation is obvious, I may go ahead and add them to the list.  This is especially true if that particular cancer is not well represented.  I know people are searching for information, for experiences with ‘lesser’ cancers.

I started the “Widows/widowers” category with even looser criteria, knowing that some will find themselves in this situation at some point and will be looking for answers and empathy.

The list is getting a little unwieldy and requires a lot of scrolling.  I am studying my HTML code in order to figure out how to convert the list so that the top of the page will contain a list of hot-linked categories; i.e. clicking on “Thyroid cancer” will take you immediately to the bottom of the list where thyroid cancer blogs are located without the need to scroll.  Some cancers can be found in the “Uncommon cancers” category until there are enough of one cancer to create a separate category (as I did with “Sarcomas”).

Cancer Blog Links is a project that I am committed to improving.  As always your suggestions and comments are most welcome.  I am looking forward to our Book Club discussion tomorrow.  See you then and take care, Dennis

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

Comments

Cancer Blog Links Reflections — 5 Comments

  1. I, too, have been looking for lung cancer blogs…since my dear friend (an RN) has been battling this disease for several years now; and my mother was just diagnosed with non small cell lung CA. My thought about the paucity of lung cancer blogs is that people with this particular diagnosis are always asked about their smoking history as if they are to blame for their own cancer and therefore do not ‘deserve’ the support that others receive.

  2. I am a 48 year old single mother who has been dealing with breast cancer since July 2003 when it was determined that I had Inflammatory Breast Cancer. My treatment was a lumpectomy, a mastectomy, chemotherapy (every 2 weeks) and radiation Twhich ran through hand-in-hand with the second half of the chemo). Thankfully, I was inremission for six years. Just last month (June 2009) it was discovered the cancer had reared it’s ugly head again, showing up in my bones. I am presently undergoing chemotherapy for a second time and I feel confident I will emerge with another long period of remission, and a lot of personal growth from walking through this process again. I am also a recovering alcoholic and a college student working on my degree in fine arts & design. I have a blog which I use to share my experience, strength and hope, and my real life frustrations too, with anyone who would like to see what I have to share. All are invited and I encourage others to share with me as well – I am always open to how others overcome their own challenges. I have a strong faith in a higher power whom I chose to call God and I rely heavily on my faith as a source of strength. I look forward to linking with others for the benefit of all to find hope and strength during times of uncertainy.
    Thanks for your blog Dennis!

  3. I think your comment about the youthfulness of the Hodgkin’s lymphoma regarding the number of bloggers and the combination overwhelming impact of some more aggressive diagnoses would lead to the relative disparities in the number of blogs on certain cancer types (did I just write that with all those big words so early?). Basically, the younger patients are more likely to blog. Older patients with more aggressive cancers, where the internet is not the norm and a less common outlet, would be less likely.

    I have found that some of my older friends with cancer are more likely to have a CarePage if anything at all. In the meantime, I do like your blog.

  4. I would love to see more links to those with Chronic Myelogenous Leukemia – CML. I blog about my son having this leukemia and how its been incorporated into our lives. Yes, my blogging is about the ‘venting’ and has also morphed into a wonderful ‘meeting place’ of others with similar situations.

    Thanks for your blog – I always appreciate the trouble others take to share – it all helps more than they know.

    love and light
    Annie
    Steven’s mom
    http://livingwithcml.blogspot.com

  5. Pingback: Why do you blog? « Journeying Beyond Breast Cancer

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