Thursday, August 15, 2013

More Comments on to Tell or Not to Tell About Our CLL

Here are three comments that tell a very different story about the risk of sharing the CLL news.
Would that the world was different. My hearts especially goes out to the first anonymous commentator, who ironically is not so anonymous at church and home. He speaks poignantly of the cruelty of friends and family and the kindness of strangers.
Strong arguments for keeping our mouth shut, when possible.
For the origins of this discussion, please see my recent post on the death of George Duke the follow-up post with a related comment and my much earlier post on the CLL death of Jill Clayburgh.
The comments speak for themselves.

Anonymous said...
I can't relate to what you are saying and the experience of others you have described.
I told everyone I knew about CLL, people I trusted and loved. In doing so, over time, my friends and close family deserted me, my church didn't understand and wasn't able to relate how ill I was nor provide me with the support I needed, eventually I left that church.
You see for me CLL, in combination with another chronic illness, made me very ill, so ill I couldn't work anymore and I lost my job, lost my career, my friends started to distance themselves and so did my close family, it was as though I were leper.
Now it is rare for any of those to phone to ask how I am, none offers to help; none visits; only my wife supports me. I use to be always the one who would keep in touch and phone and see friends and family, but now when I am in greatest need all I get is silence. Old friends busy themselves with self interest activities, I use to ask them to meet me for a tea or coffee but they always had some excuse not to meet, same goes for close family, I haven't seen my brother and sister for many years even though both are capable of visiting they choose not to. So I've given up hoping anything from them anymore. Even the medical profession has been woefully poor in providing support, so often I (and my wife) have been left to fend for ourselves.
Only now my life is close to the end does anyone seem to care, and those who do have been strangers, and at last this has got my sisters attention and she shows some concern and occasionally phones but alas it's usually a case of her saying something like "keep me posted etc.", same old habits same old complacency.
The strangers are people on CLL forums, people in palliative care, people who can relate to illness, suffering and ultimately have known people who have died. They provide words of comfort, they put an arm around you and hold you as you cry, they make you a cup of tea and offer you food, they help you walk and support you as you struggle to walk or stand. These are the real angels in this world, these are the people with love and compassion in their hearts, and these are the people who share your pain and suffering.
Yes, there really are good Samaritans in this world, however there are others who choose to look the other way and walk by on the other side, but the ones who have love and compassion in their hearts are angels in this world.
AUGUST 10, 2013 AT 7:12 AM 

(Another) Anonymous said...

The problem often lies in what you must reveal due to medical appointments. I went through a clinical trial and never missed a day of work except for days when I had infusions. I elected to tell a very small number of people who were in my direct line of reporting so they would understand my need to specify firm dates out of the office. Unfortunately a couple of those people chose to tell others out of "sympathy." Within a few days, I was inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller. Needless to say I was irate over my supervisors revealing a personal medical matter. Cancer puts you in the lineup of those due to checkout next. You are denied opportunities, treated as a lesser entity and suffocated by the premature sad news of your demise. I managed to set things straight by doing my job at a high level of productivity, much to the dismay and even annoyance of my family. But you can't show fatigue or you are out of the game. Some people started talking about my retirement, something I neither wanted nor could afford due to health insurance issues. We all have different circumstances and needs, but I would opt for silence.

Blogger justme said...
Couldn't agree more with (another) Anonymous writer, especially this: "Within a few days, I was inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller ... Cancer puts you in the lineup of those due to checkout next. You are denied opportunities, treated as a lesser entity and suffocated by the premature sad news of your demise."
I'm not so concerned about keeping or moving up in my job as to seeing the pitying eyes, etc... Since I'm mutated and haven't had treatment since diagnosis in 1/06, I would most likely have to deal the cancer label for quite some time.
Only my family (including extended) and one close friend know I have CLL.
AUGUST 11, 2013 AT 6:33 AM

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Anonymous Anonymous said...

I have experienced bits and pieces of the 3 online posters above, so I'll spare the readers my own details.

I told very few people upon dx, after waiting a week to digest the news. In retrospect, I wish that I told even fewer people. However, I was visibly sick at the time (weight loss, pallor), so it would have been hard to hide.

My biggest regrets are that business partners no longer consider me for exciting new opportunities. Also, potential new employers find a monthly day off for IViG essentially a disability. My family agrees, and I find it heartbraking that my best days might be behind me because of my occasional medical needs.

With family and friends, I am the elephant in the room. I have some friends who "tell all," with a "too bad if they don't like it" attitude, but I don't have the personality to pull it off.

I just wonder what good can come of revealing a chronic, low-grade B-cell cancer. Most believe that we either recover or cease to exist, and the idea of managing cancer as a chronic illness is a difficult concept for most, including my PCP. I can only imagine how this might be handled by providers and insurers given Affordable Care.

Instead, I have learned to participate in online and in-person support groups, and I have worked with a social worker who is surviving 2 forms of cancer that are treatable but not curable.

September 2, 2013 at 3:27 AM  
Anonymous Anonymous Artist said...

I have just been diagnosed with CLL and the question of sharing the news has been a big dilemma. Of course I told my immediate family and one or two close friends,but I have debated about telling other friends.
I have about 10 women who are close to me, like sisters, who I feel should know. I would want to know about them if the shoe was on the other foot,
However, as a fairly well known artist in my region, I have chosen to keep this very close to the chest for fear of being< inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller ... Cancer puts you in the lineup of those due to checkout next> And fear of not being included in upcoming exhibits, asked to speak at conferences or teaching...although you would hope that those who collect my work would want more. So I have chosen not to open up. I am keeping a journal, and may one day publish this to pay forward the experience for those who follow with this disease.

September 14, 2013 at 8:07 AM  

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