Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
Leonard Cohen, from Anthem
Immediately after making an important presentation to a parliamentary committee and just as I was about to rejoin my staff at a retreat on June 16, 2009, I received the phone call. The earlier suspicion that I had lymphoma was confirmed, specifically mantle cell lymphoma (MCL).
I am a husband, father of a teenage son and daughter, brother, Canadian government executive with range of international and domestic experience, who likes reading, film, music, walking, cycling, skating, being with family and friends.
I was depressed over the next few weeks. Uncertainty shifted from ‘what do I have?’ to ‘what does it mean?’. Learning about MCL on the web made things worse, my prospects appeared bleak, confronting me with my mortality. I had to deepen the level of discussions with family and friends while broadening the circle to include staff and colleagues to let them know my situation. Sharing the news did not become easier with the repeated telling.
My priority was to press for an early appointment with a specialist. Thanks to the help of my family doctor I managed to meet with the specialist on July 3rd. He quickly put me at ease on the big question; the prognosis was good for someone of my general good health and young age (51), recommended the Hyper CVAD protocol along with autologous stem cell transplant, and scheduled me to begin treatment later that day.
One of the things that I grappled with throughout the diagnostic process was, beyond immediate family and friends, who needed to know, when and how much to share? In the very practical question of being absent from work for six months at least, as well as deeper discussions with family and friends, I began to realize that while the lymphoma was about me, the impact was upon others, others that I related with, and relied on me, on a daily basis. It was about me and the group, not just me as the individual.
Given my need for support of family, friends and colleagues, my mind turned to what kind of support they in turn needed from me. They felt concerned, some felt awkward, some had experience in dealing with cancer and some did not.
My immediate management team told me to tell more people that they needed to hear it from me. Out of this came my idea of weekly updates, initially to my management team, my boss and close colleagues, and then gradually broadening as more people and colleagues both inside and outside my workplace expressed personal interest.
The updates were weekly because a week is granular enough to provide both sufficient detail and sense of the ‘journey’, as well as fitting the normal work habits of weekly planning and reporting (and our family school planning!). This also forced me to reflect a bit on the week that was in terms of what was important to share and impart rather than endless Tweets on this or that injection. Another aspect was that weekly updates seemed manageable in terms of my expected energy levels.
I keep a daily personal journal to capture both the medical and personal things going on during this journey, and draw from that in my weekly updates.
Thus, this blog started out as weekly updates. As the circle expanded, and my personal comfort with sharing increased, I wanted to see if blogging could assist or help others on similar or comparable journeys. I was curious to see how a potentially broader readership affects how I think and how I write my weekly updates, without losing the personal aspect of my relationship with my current readers.
I turned this blog and reflections into my ebook, Living with Cancer: A Journey, to capture my first three years of diagnosis, treatment, recovery, relapse, treatment, and again recovery. A short TV interview with me can be found here.
I hope that both this blog and my daily journal will help me make sense of what I am experiencing, at both the deep and practical level, during the treatment phase of the journey, as well as allow me to share this understanding with others.
Hopefully, you find these posts of interest and helpful to you and others that you may share them with, and I welcome comment and discussion.
A year and a half after treatment, I find myself in relapse, and starting yet another cycle in March 2011. So back to regular blogging and hope that this continues to be helpful to people either with cancer or helping family or friends undertake their own cancer journeys.