You might remember Donald Wilhelm from the blog post ‘Should You Write A Cancer Book?’ He’s back today musing on the nasty little subject that none of us want to think about but some of us have to: recurrence. Donald’s new book This Time’s a Charm: Lessons of a Four-Time Cancer Survivor tells his real-life story from a patient’s perspective about surviving cancer four times.
Q: What is the stupidest comment someone said to you when you told them you had a recurrence?
A: Most people are sympathetic, but I have heard several times, “Well, at least you know what to expect.” Not helpful and unlikely to make it onto a Hallmark greeting card.
Q: When you meet recently diagnosed lymphoma patients do you reveal how many times you’ve had recurrences? If so, do you worry about scaring them?
A: I often go back and forth on this topic, especially if they’re Hodgkin’s patients. Overall, I usually tell them because it seems to put most people at ease. Most folks want to know that someone has had it worse than they have it.
Q: Did you ever have friends who disappeared when you were first diagnosed but were there for you during subsequent recurrences?
A: Yes, that does happen often. Some folks are just not comfortable with their own mortality, so being around someone who’s facing a challenge makes them uber uncomfortable. I don’t judge them though, because their reaction is simply a symptom of our society’s overall issues with death.
Q: How has your relationship to science changed with each diagnosis?
A: It has ebbed and flowed. At times I watch the latest studies into things like stem cell research and monoclonal antibodies. And with other recurrences, I just trust in my own body and my oncologist to kick its butt today with drugs we have now. All in all, it may likely end up being a combination that finally does the trick for me.
Donald’s book takes a detailed look at dealing with lymphoma recurrence. To buy a copy visit his website or Amazon.
Have you ever had a recurrence? If so, how would you respond to the questions I just asked Donald? Are your responses similar or different from his? What is the stupidest thing someone has said to you?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
February 24th, 2009 at 9:04 AM
Interview me! I want an interview! We should get in touch.
Hill aka Miss Baldie
February 25th, 2009 at 6:43 PM
The stupidest comment someone said to me when I told them I had a recurrence: It’s probably because you went back to work too soon.
(Blame it on me, why don’t you?)
When I meet recently diagnosed lymphoma patients one-on-one, I usually do not reveal how many times I’ve had recurrences (7 or 8, I’ve lost count). Recently I was with a group of lymphoma survivors and was introduced to a newbie as someone who’d been through 18 years of recurrences. I felt very uncomfortable and worried about the newbie in his first fresh remission.
However, when I deliver keynotes, I do share my history, because it sets the stage for all I’ve learned about Healthy Survivorship.
Yes, I’ve had friends disappear when I was first diagnosed but who were there for me during subsequent recurrences. I think it’s because they didn’t know what to say the first time, and they didn’t want to say the wrong thing.
How has my relationship to science changed? Even though my profession revolved around science, I have a much clearer idea of how information obtained through science is different than that obtained from anecdotes or observation. I’ve always known the limits of science; I have a greater appreciation of its strengths.
I benefited from participating in three clinical trials. I owe my life today to science.
With hope, Wendy