By Andrew Griffith
Andrew Griffith has mantle cell lymphoma and has had an auto (November 2009) and an allo (August 2011) stem cell transplant. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com and can be followed on Twitter @lymphomajourney.
One of the hardest things after a cancer diagnosis is telling others: family, friends and colleagues. I preferred a more open approach for a number of reasons:
- Keeping everything inside was harder; talking and writing was a form of release.
- People close to you need to know to support you.
- Letting people know avoids awkward questions and provides an invitation for support.
- Experience with others who didn't share made it harder on others and me.
Identify your circles: Who needs to know, after the obvious close family and friends? Do you have natural support groups (religious or other organizations)? What about colleagues at work -- how wide should the net be?
Write out your script and be direct: I think better by writing out things. Particularly at work, a script allowed me to get out what I wanted to say and ensure that I didn't forget anything important.
Practice on those closest (but it doesn't get easier): First was my wife and then our kids, close family and friends, and then finally work colleagues. While my script became more "automatic," I was always uneasy when I spoke.
Each group is different, with its own challenges (our kids were the hardest). I found I just had to plough through, despite the difficulties. Telling people in person (or over the phone) rather than by email was more personal.
Set up family "conferences" as needed: While I never felt the need to do these weekly or monthly, I do these at various key moments. The hardest was just before my allo stem cell transplant, where I had to remind our kids of the poor odds but that I chose to take this risk to be with them longer (my script helped), and that I needed and counted on their support.
It was easier after the 100-day mark, but even then I had to temper good news with ongoing, longer-term uncertainty.
Tell your colleagues in an orderly manner: I managed a group of 100 people. I had to let them, my boss and other colleagues know about the duration of my absence.
I let my boss know first, followed by my staff (starting with my immediate staff, then my management team and an all-staff meeting), and lastly other colleagues. This was done largely within the same week to ensure that office chatter was based on shared information.
Ongoing communications: I started a series of weekly email updates to my colleagues (family and friends were more by phone or individual emails) to respond to their natural concerns. I then turned this into a blog of weekly updates, but with the broader audience of family and friends.
After my relapse, I expanded the blog to include articles of interest to me. People were informed on the health-related questions without the need to ask. We could focus our emails, telephone calls and walks on non-cancer, living-our-life chats.
While each of us has one's own comfort level (and initially I was more private), greater sharing reduces rumor and speculation. It also invites people to support you, and is one of the few areas under your control in the cancer treatment journey.
These steps helped me be more open about my journey. They also helped me come to terms with what I was going through and become closer to the people supporting me.
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