Friday, November 29, 2013

More on to Tell or Not to Tell

This is a topic that we all have spent some time on. Do we share our cancer story with friends, relatives, and colleagues? We all have different answers, and different reasons for them.

I believe that my past post and even this much earlier prior post and these poignant comments and these too were among my most provocative of discussion.  Worth re-reading.

So finally the main stream press is catching up to us. However, I humbly suggests that our discussions were more erudite and helpful.

The BBC takes a gentler and less probing look at the issue in this still worthwhile article.

I like how the article finishes quoting French minister, Dominique Bertinotti, who recently revealed her battle with breast cancer.

I quote:

So why has Bertinotti decided to talk after eight months of almost absolute silence?


"To help change the social attitudes towards this disease which is terribly distressing. To show that you can have cancer and still continue to work. So that employers understand that long sick leaves are not necessarily the best solution. So that there is less fear and more understanding," she said.
"Choosing to remain silent is a private matter. As a minister, my only question was to find out if I was able to fulfil my mission. And I have."
Would if it were so for all us. Sadly it isn't always. Sharing our cancer story can be risky business as you can see in some of the comments on my prior posts.
On a different note, expect several video interviews with CLL experts including more of the interview with Dr. Sharman to be posted here over the next week as a warm up to ASH.

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2 Comments:

Anonymous Anonymous said...

Its complicated probably for everyone... I have hardly told anyone. Only my spouse and immediate adult family know under a swear of secrecy. But I am young in smolder stage. In my field of work if the customer thinks you are anything but a high functioning "athlete" of sorts, they would likely not risk their business on you. Too much at stake. Add that I have older relatives who I do not want to worry needlessly, or worse, my young kids. So that is sets up my need for the Ed Bradley mode of CLL management. It's not fun and can be isolating for someone like me who likes to overshare anyway, and for my wife too. Hanging together with family yesterday on Thanksgiving and it was on my mind the entire time we were together. I kept wanting to spill the beans but had to bite the lip. When I get to treatment stage I will widen the net to more family under a plea of secrecy.

November 29, 2013 at 7:16 AM  
Anonymous Anonymous said...

A few months out from diagnosis, this topic is still very present for me. As with many, I initially told a lot of people. In fact, I wanted to put myself out there - I was not going to let cancer hold me back or be a shameful secret. That was the plan, anyway.

In retrospect, I wish I had not let the genie out of the bottle, as it were. I find that those who know tend to not know how to talk about it but at the same time that's the only thing they know to ask about. Meanwhile, the professional aspect has been a big issue for me...including having a job offer from a friend and colleague mysteriously evaporate after she found out about my diagnosis.

It is tricky - if people do not disclose, more people will misunderstand the nature of this cancer, and why it is so different from most of them. My friends cannot understand why I haven't started treatment yet, why there haven't been surgeries, etc. If more people knew that it was not a major issue, and had minimal impact on ability to work (for the most part), that would be helpful. Staying silent won't do anything to change that. On the other hand, it's a significant sacrifice to ask of the pioneers.

November 29, 2013 at 4:59 PM  

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