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Do You Ever Feel like a Leper


ursol

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Sometimes I wonder if I should not have told anyone that I had lung cancer. Obviously they would have wondered what was wrong with me once they saw the wig and the obvious health changes but maybe I could have kept more specifics to myself.

I say this because more and more I feel very isolated. I have my really close friends who still treat me the same for the most part but at work there are so many people who treat me like a leper. They stay away from me, they don't ask me questions instead they ask my team members. Sometimes they don't even respond to my e-mails. No one ever says to me "how are things going" people say instead "how are you feeling". A nice woman at work said to me the other day "I hope you don't mind that I don't ask you how you are feeling, I'm sure you are sick of hearing that". I was so thankful that she understood how I felt.

I cannot imagine what it must have been like for my grandmother when she found out she had cancer at 37 years old in 1927 and had to deal with the fear that people had about cancer back then. I really don't think that people see me as a person anymore, only as a disease. It really makes me sad.

Anyhow...I needed to share that tonight. I'm going tent camping with my family this weekend, first time since my diagnosis. A little bit of normalcy. Hope you all have a great weekend.

Lilly

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Lilly I may not be able to relate to this post but I can wish you fun and happiness and Great times under the star lit nites this weekend!!! that sounds like so much fun!!

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Lily-

I so understand where you are coming from. Thats one of the reasons I kept to myself and my close friends the fact that I had been diagnosed. Altho I do not work outside the home, I was extremely involved with my son's swim team being a board member and being the coordinator. First, I figured if you weren't nice to me all along, don't be nice to me now, secondly I didn't want the stares, the pity looks etc.

One thing that bothers me now is that when I run into someone I haven't seen in a while who knows, they always say BUT, you look so good!! Whats the BUT for?? May sound trivial but to me its like they are saying you really should look horrible.

I have to tell you a story from about 20 years ago that has always stuck with me. Its one thing I thought about very soon after I was dx'd. When I was working, we had a part-time temp that came on. No insurance, no sick time. Very soon after she was hired, she found out she had cancer. People at work treated her like she had the plague. My grandma had just died of cancer and I tried to befriend this lady. She had noone - divorced and was estranged with her only daughter. So one day we are going to have a staff meeting, and its was going to be in our AR dept. This gal was off from work that day. Another girl from our payroll dept (who was the supervisor) sat in this gal's desk chair. She immediately jumped up and yelled "Oh can't sit in that chair" and proceeded to wipe the back of her pants off!!! I was absolutely appalled. Several other people laughed and thought it was funny!! Fortunately, my boss heard and after the meeting took her aside and gave her a verbal tongue lashing. But I have never forgotten that and it just goes to show how truly IGNORANT some people are.

I guess we need to just say we don't care about those ignorant people and worry about the things that really matter - our close friends and our family. I know thats easier said than done but we need to focus on the nice people who do wonderful things for us.

Hope you have a GREAT weekend.

Hugs - Patti B.

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Lilly,

I know just how you feel. There is one woman at work who smokes quite a bit. I used to gently chide her about quitting. When I was diagnosed, she couldn't look at me or be in the same room. It was as if she either felt guilty for my cancer or maybe that she would catch it. Anyway, I finally made a big effort to talk to her -- just work things, not health -- and normalized the relationship. Not for her, but because it was making me so ucomfortable.

I get "happy talk" from my boss. When I asked for medical leave before my first surgery, she tried to convince me that I would soooo enjoy retirement. When I told her in Feb about my new tumor and probably needing anothe medical leave, she just pooh-poohed everything. When I scheduled the surgery, she was suddenly in an uproar, looking for a temp worker. She said things like "Do you really want to do the surgery so soon?", even though I had given her plenty of warning. She just didn't want to think about it.

Others at work have been wonderful but I sometimes feel that they see me as the librarian with lung cancer not as Linda. I have 2 co-workers who are cancer survivors, one colon and one breast. The breast cancer survivor has been very supportive; the colon cancer survivor just doesn't want to talk about it at all.

Enjoy your camping -- hope the weather is great -- and try to forget about work for a while.

Linda

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Hi Lilly. Let me first say that I admire your strength in being back at work with all that you have been through. I have been back to work as well, but am needing to back off again at the moment. I'll share my experience:

Once I got over the initial shock of diagnosis I knew I had to communicate something at work as I was going to be off for awhile. At my workplace (of 400), 2 women had died from LC in the past year. So I was the 3rd. The fact that they had LC had been communicated by our HR department and I remember thinking I did not like the way it was messaged, way too negative. So I decided early on that I was going to take ownership of any communication about my illness. I am a senior exec at work so pretty much everyone knew me. So I sent my first message (of a few more to come) about why I was away from work, I added lots of humour, and was very positive about successfully beating this thing. And I told people that I was the same person I was before I got this disease and that it was perfectly okay to come up and talk to me and ask me how I was doing. I even did a Lunch 'n Learn talk about LC while I was going through first line treatment. Well I can't tell you how many people thanked me for hearing from me directly. And it seemed to work, when I saw people out and about they had no problem in coming up to me.

Then I wrote another note after 1st line treatment when I decided to go back to work. Told everybody I was coming back and what I had been through and that I was feeling good...bald but good. And although I was a bit nervous going back, again, people seemed to respond to me fairly well. Lots of elevator chatter, office drop ins etc.

I do scare some people though. I know that. Some people still do not know how to approach me or what to say. What I have found though is if I start a conversation and smile of course, then they warm up real fast and know that it is ok.

So that's the approach that I think has positively worked for me. And I have had many people thank me for letting them know first hand from me. It has allowed them to be more comfortable with it all. I kind of had to go that way though, and it is not an approach that everyone would be comfortable with. I have found that us LC survivors need to be very brave and outgoing and let people know we are ok and that we are the same people we were before this diagnosis. The bravery, the I'm ok and I'm going to beat this thing does get tiring sometimes I know. But we do it for others to help them cope better.

I have also done some other LC advocacy work and when asked what other people can do for us I respond...please treat us like normal human beings, treat us the way you did before we were touched by this awful disease.

Lilly, I am so sorry that you are feeling isolated at work. Because that must be quite simply awful and I understand your sadness. I am not sure what to suggest at this point in turning this around. People aren't intending to be mean, they just haven't a clue how to approach you. If you are up to it, perhaps just approaching a few of them instead with idle conversation might start to turn the tide the other way

And I hope you have an awesome time with your family camping this weekend. Our family loves to camp as well.

Take care

Sandra

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I love SandraL's approach -- proactive in the best sense of the word!

Thinking back to my pre-cancer days, I can definitely recall being at a loss for what to say to acquaintances who had been diagnosed with cancer or some other life-threatening condition. I'm sure I came across as awkward, maybe even aloof or stand-offish. Basically, I was afraid that what I might say would be the wrong thing and unleash a flood of who-knows-what, so I said as little as possible.

Now that the roles are reversed, I can see that same paralysis in longtime friends who I haven't seen for a while. I try to break the ice with some comment about my different appearance (oh, my beard -- my hair grew out sorta funny after chemo) and I probably tell them more about my cancer than they really wanted to know. But often I can see them visibly relax when they realize I don't mind talking about it, and the next time we meet is a lot more natural.

Lilly, hope you have a GREAT time on that camping trip! Aloha,

Ned

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((((Lilly)))) (Sending you a great big hug)

Your posting brought back a memory for me.

Years ago, my grandmother, when she was my present age, had breast cancer. She told all of her friends and acquaintances.

A friend/neighbor stopped visiting her. The reason? She told my grandmother that she didn't want to "catch it."

I was shocked at the ignorance.

However, nowadays, it has more to do with feeling of inadequacey socially in speaking with a cancer survivor.

When my sister contracted breast cancer in her forties, some of her friends backed off into the way-off background. Why? They weren't thinking of Claire. They got caught up in thinking about their own awkwardness in communicating with her.

Frankly, my sister and my grandmother never regretted telling people. They were able to help others along the way, and made many, many more "friends of great value."

My grandmother was dx'd at age 73 and lived to age 88, when she died of a stroke. My sister is still alive, missing one breast, and a survivor. She is also a uterine cancer survivor, which she was diagnosed with when age 35.

Barbara

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Hi Lilly,

I have a funny story about work... it wasn't funny at the time but now I look back and laugh at the girl. I had a secretary whose grandmother had just went through breast cancer. So, when I was diagnosed and on chemo she told one of our realtors that she was afraid to go to the bathroom after me since my chemo might cause her to become sterile! I thought I would scream!!! However, I emailed Dr. West and he sent me a speedy reply that said that was crazy and I simply forwarded it to her and the other agent. Never another word! :roll:

Betty

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