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Deb W

Has anyone experienced this kind of reaction?

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Tomorrow it will be 6 weeks since my surgery.

I ran into a person from my previous office.  I hadn’t seen her since I moved my office to another location 9 months ago – not really a friend and barely an acquaintance.   She looked at me with this sad, overly empathetic expression. She kept hugging me and it seemed over the top.    I wondered if somehow she knew that I had been diagnosed with lung cancer.  It turned out  that she works with my client’s mother and she told her.   She said that no one could believe it when they heard that I had lung cancer, and they remembered seeing me running with my dog and it was so sad.  I thought maybe they were worried for themselves as some are smokers, and I am not so maybe they could get it too.  I can’t seem to get her look and expression of pity out of my head.   It seemed as if she thought I had a death sentence and she was just so sorry.  I don't feel the need to talk about medical issues with others.  I can talk about it here and to friends and family.  It's not that I want to hide it because I do plan on becoming active with Lungevity and Lung Force.  If you've had a similar experience, how do you process/deal with it? 

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Good for you for getting involved with those organizations.  I’m also a never smoker, recent surgery and do get those reactions.  It’s always uncomfortable talking with people I barely know about personal health issues.  It’s also uncomfortable not knowing who knows what.  I find myself having to ask my wife how much different people know when I know we’ll be seeing them.  Most everyone knows I had surgery.  I have not shared with everyone the specific of why I had the surgery.  I had a dad on my sons baseball team ask me how I was doing the other day.  I couldn’t remember what specifics he knew so I just kept it to a simple “I’m feeling good, thank god.  Thank you for asking”.   I had a vendor through work ask me the other day.  He seemed to be more aware of the specifics so I got further into it.  I usually focus on how lucky I feel that it was diagnosed early and the  positive aspects of my prognosis going forward.  I do also have the complicating factor of three young kids, 10/8/6 year old boys.  They know I had surgery, they know I had part of my lung removed because there was something wrong with it.  We have not used the word cancer with them. I do need to be careful who I share that info with in their circles.  I do have a sense that I should be talking to as many people as possible about it.  There is a smokers stigma to this disease.  The more people who realize this disease can affect anyone, the better awareness of that and the better the chances it gets the funding it needs for a cure.  I’m not fully there there yet but I’m working on it.

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Hi guys, 

Yes, I totally get what you are talking about Deb.  Initially when I had to let people know why I wouldn't be returning to work (like ever again), the look on their faces was what I would describe as shattered.   Since I'm seven months into this, I really don't have any qualms about sharing my diagnosis with anyone.  It was such a shock for me, my family friends, teammates and colleagues.   What I've done is develop a short "elevator" pitch (I used to head up a sales organization) that is matter of fact.  I don't tell anyone about the Stage IV part as then people have many preconceived and uninformed assumptions.  It's been my experience when people have that over the top reaction, it's really their own fears they are facing.  Sometimes I think I'm coping better than my friends.   So I focus on the positives, emphasize the advances in research then quickly move on to the regular life "stuff".    

It is my great hope that the "surgery" peeps can at some point serve as our collective voice and lobby for the severe underfunding of lung cancer research.  It's not until we start making a LOT of noise that we can begin to benefit from the cancer advances.  Now that we are living with lung cancer as a curable condition (in early stages) and chronic condition (with treatment) look out Capital Hill- pretty soon there will be a wave descending upon them.   

Michelle 

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Deb,

Lung Cancer is deadly! It is a real shame that our National Institute of Health and the Congress don’t translate deadly into research dollars. 

I remember the dead man walking stare I received from those that found out. Word traveled quickly in my case because I had an episode of coughing up blood while at work. Everyone knew and there was a great deal of surprise when I returned to work after a year of surgical mayhem. Then came the two recurrences and again the death stare. A lot of people told me my experience was the catalyst for stopping smoking. So being an awareness model is productive but my frustration is translating my experience into more research resources. When people talk to me now about lung cancer, my first words are research and LUNGevity. 

We’ve got to get past this “self induced” stigma our society has. HIV/AIDS, drug addiction, and even obesity are well researched despite being mostly self induced. And, very sadly, about 18% of us are never smokers. 

So, rather than avoiding the conversation, turn the event into a research advocacy moment. Targeted therapy and immunotherapy have made a huge difference for many of us but those advances are not enough. 

Stay the course. 

Tom

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 I like Michelle's idea of an elevator speech.  I can  imagine her as a cheerleader for lung cancer awareness. Go Michelle!

I've been generally open about my cancer diagnoses, all 3 of them. I've also been pretty upbeat when talking to others about cancer, and i don't avoid the word. I'm acutely concious of the stigma associated  with some diseases, since I've  had a number of friends die of AIDS. Lung cancer has some of the same kind of stigma as HIV and I think a way to diminish this is to banish it for myself by talking about it if it was just any other illness.. Yep, I had surgery, it was fairly easy, and I'm fine now!  I do mention that I was fortunate that my cancer was discovered early and so I don't need other treatment. Just like my spouse might talk about her gall bladder surgery. I save any moaning and groaning and feeling sorry for myself  for people I'm closest to and for this forum  (lucky you!).  I generally answer questions anybody has (unless they are TOO personal). The question "did you smoke?" is problematic. I didn't, but I'm uncomfortable with the question because it tends to divide us into "the unfortunate- it's not fair!" and the "it's your own fault".  It's important for people to know that anybody who has lungs can get lung cancer and  we're all in this together.. Nobody choses this disease and nobody deserves to get it, whether they smoked, breathed asbestos, or lived in a place with high radon.

So thats how I deal with it, and I don't get a lot of those " death sentence "  pity type looks. Everybody  has to deal with this stuff in the way they're comfortable with. I know, as to lung cancer, that it may be easier for me because my cancer was diagnosed early and so was relatively  easy to treat. For my gynecologic cancer, that wasn't so. It was advanced, my surgery was big and had long recovery, followed by radiation, chemo, and  treatment side effects, some of which are permanent. My approach with others was generally the same as with the lung cancer, and I didn't get many sad, death sentence looks then either. I did get "you' re so brave" to which I generally responded with something like " I'm not brave, I just dd what I needed to do to save my livfe and now I'm living my life." 

So Deb, do what your comfortable with. Except for close family and others you depend on for support, it's really none of their business and what you chose to tell them is up to you!   Hang in there and live the life you want. 

Bridget O

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A lot of people think it IS a death sentence.  They maybe know about people who died and haven't heard about the people who are perfectly well or have long lives after getting the latest treatments.  

As noted, it's totally up to you whether to talk about lung cancer--in general, or yours specifically--to anyone.  

But you might tell them that you are fortunate in that it was caught early, you had surgery, and you have every reason to believe that's the only treatment you will ever need.  Remind them that Ruth Bader Ginsburg had basically the exact same diagnosis and treatment, at 86, and she's back on the bench, hearing cases.  You can say you appreciate their concern, but you intend to be sticking around till YOU are 86--and beyond.  :) 

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Thanks so much for all of your replies.  Right after my diagnosis I fell it was important  to tell my long term  clients because I was going to be out for 4 weeks.  One woman said, I'm so sorry, my mother died of lung cancer...and that was before I had surgery.  I think people do the best they can, and they don't know what to say.

I like the "elevator" pitch idea.  I've also made it a point to refer women to the Lung Force site as well as Lungevity.  The stats for women with lung cancer are alarming...up 87% over the last 40 years.  I am still educating myself as there is so much out there.  I tell my story to close friends.  I didn't realize that Ruth Bader Ginsburg had the same diagnosis...see what I mean about not knowing.  Prior to the diagnosis it's not like I would read about lung cancer.  

I'm preparing myself for a dinner next Saturday, and I know that people are going to ask me questions, and I really don't want to talk about it.  I just want to have a good meal, listen to great music and participate in light chit chat.  I can't bear to look at the sad faces. I never thought about how it might feel when people looked at me with pity.   I do believe as mentioned above, the people reacting very strongly are thinking if it can happen to her, it can happen to me.  That's really the point.  

Thanks for your comments everyone...so very helpful.

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Hi Deb W:  I am a little over a month into my LC diagnosis and have had the sad, puppy dog eyes directed my way and it is very hard to look at the sad faces.  Like you said, I never thought about how it might feel when people look at me with pity.  All of the comments are really helpful and thanks for bringing up this issue.  

 

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