The Bonds of Survivors

Galway, western Ireland

Last week I talked about attending a transplant survivors’ conference.  I referred to the participants as “my people” because of the strong sense of identity that was palpable at the meeting.  With a diagnosis of cancer we gain admittance, unwanted this time, to yet another social club.  We become members of a tribe.  The tribe of the lost? the tribe of the found?

People commonly build identities with groups – our families, our church, our high school, our sports team.  There is the comfort of recognition – that we share a viewpoint, values, goals, fates.  Strength in numbers.  Knowing that we are not alone.

Survivorship confers a special bond.  Like all such groups we have shared common experiences.  But with cancer many of those experiences reek of despair, suffering, devastation, and pain, sometimes but not always followed by more positive experiences of remission, of renewal,   physical, emotional, spiritual renewal.

If you search cancers blogs as widely as I do, you begin to sense special bonds in smaller communities of survivors.  Breast cancer survivors are bound together not only by clinical experience but by an expanded political consciousness.  And even within this group, subgroups like inflammatory breast cancer survivors or BRCA+ women coalesce around their particular afflictions.

The community of Hodgkin’s survivors all share a keen sense of injustice balanced by triumph for most were struck in the prime of their lives and most were successful in overcoming their disease.  The parents of young leukemia patients share strong bonds as do the parent of brain tumor patients.

Perhaps we should all mourn a bit for victims with lung cancer or pancreatic.  Their numbers in the blogging community are small as the duration of their survival is short-lived.

The survivors of my bone marrow and stem cell transplant tribe were all strangers drawn together by invisible ties.  We shared stories of treatment and of ongoing problems with chronic graft-versus-host disease.  We saw that some of us fared better than others, some of us have fared worse.  Those at the meetings newly transplanted, bald and still wearing masks, took heart in hearing from others that were 5, 10, or 20 years out.  One man facing an upcoming transplant seemed a little shaken by our tales of GVHD woes.  But the folks in this breakout group assured him that we were unanimous in our conviction that we would do it all over again.  The grace and blessings that have been showered upon us throughout our survival have made the suffering more than worthwhile.

A different tribe of survivors sat beside us in sessions, huddled in pairs like salt and pepper, our caregivers who now shared a common bond with each other, expressing their own challenges in breakout groups.

Attending the conference was reaffirming.  But the group that I daily feel communion with is the tribe of cancer bloggers.  We have many and varied reasons for having started our blogs.  Those reasons sometimes change and evolve as we become aware of a sense of community.  There is that sense of sharing, of giving back, of possibly making a difference in the lives of others.  So we continue to blog.  We continue to read other blogs, offering support and encouragement, especially to others with similar diseases.

So, for me, it has become this tribe, this community that I increasingly direct my writing efforts to.  Increasingly it is for you that I continue to work, however imperfectly and erratically, on developing this “blogging portal for people transformed by cancer“.  You are, after all, my people.

Share

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.

Leave a Reply