The Responsibility of Survivorship
This past weekend Oscar-nominated Hollywood and Broadway actress Jill Clayburgh died at age 66. The cause was chronic lymphocytic leukemia (CLL), which she had been fighting, privately, for 21 years.
As you may recall, I, too, have CLL and I was diagnosed at the same age, 45. For me, I am 16 and a half years into that “battle” although, fortunately, I have been feeling very good in the ten years since I received treatment as part of a breakthrough clinical trial. While I have no symptoms and take no medicine I do not consider myself cured.
So when someone like Ms. Clayburgh dies of CLL after 21 years I can’t help but wonder if the disease will shorten my life too, even if I feel good now.
That brings up the question of what do we do with the time we have when we know we have had a serious diagnosis and the clock may be ticking for us – or not?
In the notice of Ms. Clayburgh’s death it said she dealt with the disease privately. In my case, if you have ever come across my writings or interviews before you know I take the opposite approach. I am VERY public about my health in an effort to mentor others. I actually see it as my responsibility.
No one wants a serious diagnosis. But if you can beat it, or perhaps in my case, beat it back, can your reprieve or cure give you the chance to inspire others and to bring them helpful information? And if you are a celebrity is that part of the job? Some of it can be just with your actions. Patrick Swayze did that by starring in a television series even in his final days with pancreatic cancer. But, sadly, some other celebrities have used their illness or even a distant relative’s as a way to make more money. These are not the actors who appear for a charity. These are usually the celebrities in medical product commercials.
On the one hand I am glad they have “gone public”, on the other I think the effort should be selfless.
But you don’t have to be a celebrity to make a difference by speaking out. For example, if someone is diagnosed with colon cancer, can’t they make a difference by urging their friends to be screened. Now, with the latest news about the benefit of CT scans to detect early lung cancer, our biggest cancer killer and our second biggest killer overall (after heart disease), could a lung cancer survivor or family member of a current or former patient urge current or former heavy smokers to be screened? This could easily save a life.
Personally, I am very glad people are more apt these days to share their health issues. It is much less private than it used to be. However, I believe that sharing can be more for a purpose – to inform, inspire and empower others. I respect that Ms. Clayburgh didn’t feel comfortable doing that, as best we know. I wish she had, because in CLL, just the fact that she had continued acting would have given comfort to many people I know who are stopped in their tracks by the diagnosis.
So do we patients have a responsibility to others? I say yes. What do you say?
By the way, I now have hosted more than 2,000 interview programs. You can find them by going to any search engine and typing in your health topic + patient power. Tell a friend!
Wishing you and your family the best of health,
Andrew
Andrew:
I am convinced that you have beaten CLL – it wouldn’t dare come back given how powerful a patient you are!
Love,
Amy
I agree with you, Andrew. As one who has survived stage 3 prostate cancer, I have felt in necessary to inform others. Yet, it’s amazing how many people, including an oncologist, who would rather not know, keep uninformed, not be tested, or hear about prostate cancer. Approx 90%” of men will die with it, not from it. I understand that death from prostate cancer has risen. Perhaps, that’s from better science tracking actual causes of death rather than the percentage actually being higher. Whatever it is, I have a disease that was not recognized at such a late stage until AFTER surgery. Had I had a biopsy 1 year earlier, it may have been just stage 2, or stage 1. So, I live from blood test to blood test, fortunately having a clean bill health on my last one almost 2 years later. No PSA tests for a year, rather than the every 3 mo, then 6 mo. Hence, I tell male friends and ski-teaching buddies about getting check-ups. Get the disease early. Yes, I tell my story. It’s my responsibility.
I just found your blog. As a fellow cancer survivor, my thoughts and prayers are with you.
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Intriguing headline! The decision of survivors who ‘go public’ depends largely on PURPOSE.
For some, it can be a cautionary call to action: “Don’t do what I did!” – like lung cancer patients warning school assemblies on the perils of smoking. For others, it can be to draw attention to a specific health risk, urge early detection, raise funds for medical research, inspire other survivors.
For still others, it’s part of a therapeutic adjustment to diagnosis, a public extension of a private journal, a way of trying to make sense of what the hell has just hit them.
The latter’s what catapulted me into the unexpected role of women’s heart health advocate as a Mayo Clinic-trained heart attack survivor. Because of my blog HEART SISTERS – http://www.myheartsisters.org – and my public speaking gigs, I’m sometimes greeted by strangers: “Oh, you’re the HEART LADY, right?”
But a public disease can also define us. Is this good?
We need to remember that we are NOT our diagnosis!
Regards,
Carolyn