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That look we get....

mom2greatkids's picture
mom2greatkids
Posts: 520
Joined: Jun 2011

Hi Ladies.

 

When someone learns you have OVCA, do you receive that "scared" look?  I usually just reply with, "well, we're living longer with it today than a few years ago. 

 

I'm sure you've all seen that look.

 

Carla

 

scatsm's picture
scatsm
Posts: 255
Joined: Apr 2013

the one that says, ahhh, you're not long for this world. I usually also say something like I plan to be around for a long while or if I'm in a mood I say, oh I'll be dead soon and that usually ends the look. Then, they just think i'm crazy.

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

where they take a step back like it's contagious? Then, for some reason, you start hearing about all the other people they know who have cancer. Maybe we're supposed to feel better if we know that others are suffering? Seriously, I think people are taken aback by hearing that you have been diagnosed with something that they fear and don't understand.

                                                        (((((HUGS)))))    Maria

Alexandra's picture
Alexandra
Posts: 1271
Joined: Jul 2012

Ha-ha, I got the look many times. It's usually followed by a story about some distant relative who died from a different type of cancer. Or a fake "but you look so good?".

I used to say that I feel like a leper. Till I realized that probably somewhere there is a forum for discriminated leprosy survivors.

At least most cancers do not carry the social stigma like HIV/AIDS. I can't imagine how these people must feel, especially the innocent victims who contracted it from a cheating partner or blood transfusion.

It's all relative.

 

kikz's picture
kikz
Posts: 1284
Joined: Jun 2010

awkward silence that goes along with the look.  I get the look straight into my eyes while they say, "You look good."  I am kind of tired of the whole thing right now. 

For some reason I am not my usual upbeat self.  I guess it has just been one thing after another.  I have gotten good news twice, the lowered CA 125 and the heart but I still feel down.  It's probably the lack of activity.  I am used to going to my yoga class and hike once a week and shopping after the hike.  I normally go to my hairdresser once a month after the hike and then go shopping.  I am housebound right now and nobody is beating a path to my door.  I really feel forgotten this time around by friends and family.  The first time around I had a bunch of people who were taking care of me.  I was quite pampered.  This time I haven't even heard from many of those.  I get kind of angry because I would think family at least would call to see if we need anything or bring a dish by for my mom and son.  We do ok but it would be nice.  I haven't even shared the second tumor or that I am on chemo with some friends.  They know I was having a petscan once the drugs stopped working and haven't called to hear the results.

I remember what someone on this board said when I was questioning calling people with my news all the time.  They said the ones who are in my life will know.  I didn't really get that at the time but I understand now.  Those who keep in touch will know. 

My friend always tells me people are busy.  I say I know they are but why can't I be part of their busy?  I told her I bet they would make time for my funeral.

Sorry ladies, I am trying to get past all this self pity.

 

Karen

    

lovesanimals's picture
lovesanimals
Posts: 1285
Joined: Sep 2011

and I interpret it as them not being sure if I'm going to make it.   I reassure them that I'm doing very well, thank you.

Karen, I know it's no fun to feel forgotten, especially when you are facing very difficult challenges.  Before my surgery and chemo, someone told me to not be afraid to ask for help or other things that I need.  Like you the first time, quite a few people jumped to help me and bring me food and help in other ways.  I still asked a couple of other people to bring me my favorite dishes and for other things.

If they haven't been in your shoes, people have a hard time really understanding what it's like to go through what you're going through.  I don't think they intend to be mean or purposely neglectful.  They just don't get it or need reminding.  I would encourage you to consider asking your friends/family for what you need:  favorite foods, their time, etc.  I'm betting that you'll get some good responses!

Kelly

Pamela B's picture
Pamela B
Posts: 108
Joined: Jan 2013

Karen

I experienced the same thing  Overwhelming kindness at first and the all but a few friends tapered off . As my news became more positive  I heard less and less from them.  I asked one of my friends why this occurred and she said everyone was tired of asking how I felt all the time in case if was bothering me.  They felt like they were intruding.  I told her I wanted them to bother me!  I needed it.  Some friends and family  just couldn't handle the thought of my demise and just stayed away.  I have learned that everyone handles it differently.  Even with us I know some women, like me, who want to know everything, and question everything, And I have met woman who just go along with the program with their head in the sand.  What ever works.
 
I haven't experienced the look yet but I do get all the stories of people with other cancer some who have lived and some who have not. Then they want me to talk to their friends who have different kinds of cancer to hear their stories.........Ovarian is so different I don't feel the need to hear about how they are "cured."    I know they all mean well but it is annoying to me!
 
Hope you are feeling better very soon.  You are definitely not alone!
wholfmeister's picture
wholfmeister
Posts: 268
Joined: Dec 2012

Recently, a woman I do not know was trying to get around me to an area where she was not allowed, and my job was to keep people out.  She was very pushy while I firmly, but politely said she was not allowed.  Then she said, oh, please! I'm dying of breast cancer!  I smiled and told her, "I know just how you feel...I have ovarian cancer."  EThe look on her face was priceless as she made a hasty retreat!

I am actually used to that sort of look, because when people find out my work is to study child deaths, they tend to gasp, look away, take two steps back, change the subject completely and remember somewhere else they need to be.

Karen, I am so sorry you feel so alone and forgotten.  I think it has to do with the chronic nature of our disease, and unfortunately, human nature.  I, too, am no longer so closely tended to by friends.  I do ask when I really need something, and those few true friends always respond.

Rosamond M
Posts: 86
Joined: Apr 2013

Yes, I have received that look often-initially from the nursing sister in the surgical ward before my first chemo. Her look was a sympathetic look but it was not good for my optimism in dealing with this disease. I feel that people don't know how to deal with the disease that we have so just want to avoid any contact with us. To be fair, though, I have also received some very understanding smiles from understanding people. When I see a "fellow traveller" I always go and introduce myself and have met many very courageous people dealing with worse scenarios than mine. 

   Karen, people may think you are dealing well with your disease so maybe an e-mail to your contacts could help your situation. 

scatsm's picture
scatsm
Posts: 255
Joined: Apr 2013

When my ovarian cancer was diagnosed, I had my friends and family and the whole community supporting me. I felt so taken care of throughout my chemos and surgery. When my breast cancer was diagnosed a year later, I felt that everyone except my family thought it was the same old, same old...here she goes again. I have felt withdrawn from most of my friends as a result. It didn't help that 2 of my cancer buddies, one with melanoma and the other with small cell lung cancer died within 9 months of their diagnoses. One of them was a really close family friend and neighbor and I miss her every day. I do agree that that the chronic nature of this disease is what causes people to forget about us. They assume, if they haven't experienced this, that once you are in remission you are cured. If you get a recurrence. they become scared and withdraw. It is easier to just go on with your life when you you have the choice. I do now understand in a different way how important it is to follow up when someone is ill. The acute phase is important, but the chronic part is too.

I hope that this community brings you some comfort. You aren't alone as long as we are here!

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