Do *We* judge each other on our Stage?

pj12

I couldn't edit the message so here is a footnote from Michelle.

That would be great if you could post it. I would ask one edit: the sentence that starts "That takes a steady 10 days" is a little awkward (well, others are, too, but I'm trying not to be anal). So if you could edit that to say:"Getting to 50 posts at the rate of 5/24-hours takes a steady 10 days."

Sydney6

I agree with StillVerticle.  This place is so supportive and has made me appreciate people I don't know in a whole new way.  I can remember the first time I went to the oncologist.  I was 45 yrs old - definitely the youngest person there.  I felt like everyone was looking at me like I didn't belong there.  Also, the first day I showed up for radiation. There is a special parking lot for the cancer center.  Some old man yelled at me that I needed to park in the other lot, I am assuming because I looked so young.  I went into the place in tears.  People judge and I'm not sure why.  Anyone can get cancer, anyone can get mets.  We just need to be there for each other because no one knows what it's like to hear those words you have cancer except the people who have heard them.  Yesterday I posted to the Stage 1 thread, but I'll say it again here.  It was my one year anniversary out from surgery yesterday. I appreciate all the support you have all given me.  I read your stories and you are never far from my thoughts.  You've helped me so much.  Thank you.

Sue

ruthbru

OK, now I am getting frustrated; even though I am at 53 posts, I am still getting the 'no more than 5 posts in 24 hours notification' when I try to send (like I had to wait from last night until now to even post this to ask the question). Have they upped the ante? Do I have to contact someone (and if so, whom)? Help!!!

pj12

ruthbru,

I never had to do anything once I made it to 50 posts.  Can't explain it.  Sorry you are having trouble.  Frustrating!

pam 

otter

Looks like the limit was lifted for some people well before they reached 50 posts, but not for others.  What's with that?

otter 

Sido

Sydney6: I'm 42 and I get the same reaction at the cancer center and at the local support groups.  The older people stare at me as if I've invaded their space.  I went to a "Look Good, Feel Better" meeting where every other woman was a good 20 years older than me, including the "experts" leading the meeting. (Part of the problem may have also been that I'm from Los Angeles and new to the Midwest - it is an entirely different culture!)

On a side note...has anyone else noticed that elderly people seem more likely to point and stare when you don't have hair than children?

Sido

5andcounting

Sido- I'm 43, single and asked my onc about starting a cancer singles group. He loved that. Laughed his a** off and then said he'd sponsor it.  I don't want to sit in a corner til this whole treatment thing is done. I don't want to meet anyone in particular but it would be nice to talk with a man who wouldn't freak out when he found out my hair is not firmly on my head.

Diversion is a good thing for me, I work, have two teenagers and am not used to be quiet. I hate this "sick" role. It really sucks.

Ezscriiibe

Sido: I guess I'm an older woman (54), but my first reaction to your thinking that they stare at you like you might be invading their space may not be why they are staring. I know that since my diagnosis, whenever I walk into any of the cancer treatment facilities, I find myself staring just a little too long at other, younger women not for that reason, but more out of extreme empathy. I look at some of these younger women and my heart goes out to them, facing such a monster at such an early age. I think to myself, "Oh dear, you should not be here!" not because it's "my space," but because it just seems so unfair. 

But because I am a very private person, I can't bring myself to say anything. Just look and try to send psychic waves of support from my brain to theirs.

I'm sure they must think I'm quite daft, staring like that and not saying a word. 

I guess I'll try to be more aware of it. 

Michele

barbe1958

Michele, I bet they DO feel your psychic waves! You'd be surprised at the power of thought...

(or maybe you wouldn't be, but that made a good ending to a rather short sentence! )

Sido

Michele,  I have felt it when people are sending good thoughts.  It's the people who look at me like I'm an alien or point and whisper that make me feel like a spectacle or invader.

crs319, there should be a singles group!  I'm lucky to have my husband, but the "sick" role definitely sucks!

Another "Look Good Feel Better" story...When I went to a Cancer 101 class we were told about the LGFB meetings and they mentioned that in Chicago they had meetings for men.  The women leading the class started laughing at the idea and joking about toupees and the like.  There was a young man in the class and I felt bad because I know that men would want to know about skincare during chemo and such.  Everyone wants to be pretty and no one wants to look sick.

Anonymous

Chasinghope... Hugz!... I am stage 4 and I am not 'touchy' or jealous of the lesser stages... Praise God there are women who have a cure option with treatments.

I decided from the beginning of this "breast cancer journey" I hear it called...  to be transparent.  I figure I will annoy some folks, cheer others... I will have good days and bad days... I will even have moments of self pity and cry my eyes out... We are women and we are more naturally emotional and then go playing with our hormones too... geez... This diagnosis turns our world upside down...

I work at staying positive and it is often 'work'.  I have talked to enough in person long lived stage 4 survivors that tell me working at staying positive is life therapy to compliment our other therapies.  I have done enough research to know we can affect our health outcomes by working at limiting our emotional crashes.  I am not striving for perfection...I am striving for progress... and I am not past taking anti-anxiety drugs to help me 'feel' more emotionally strong.  They are packing me with some powerful chemicals that hurt me... I might as well accept freely a few chemicals that will help me 'feel' better emotionally too...

I started chemo 12/11/09... I knew I could easily fall into depression... so I went to the pound just before Christmas and adopted a kitten for pet therapy purposes.  Little Sammy is a grey tabby and he purred and loved on me and played with my necklace from the moment I picked him up.  He was a home fostered kitty and very tame and gentle to handle.

He has made an INCREDIBLE difference for me during this season of life.  He could care less that I am stringy haired bald, gaining weight, all swollen and flush in the face and need to spend a day or two each week in bed petting him.  He sleeps curled up in my arms and loves to love on me. I love to pet on him.  I rescued him from a lonely cage...and I totally rock in his kitty mind and he in mine.

I told my ONC about my adoption after the fact because I read the litter box concerns and disease/infection worries.  My kitty is an indoor kitty, I buy top quality litter, I have a scooper, a box of latex gloves, antibacterial soap and that after wash antibacterial lotion.  I am just careful and I will take my chances with 'potential' infections.  I have had cats off and on all my life and they are very clean pets.  I 'needed' pet therapy...

I am so sorry about the beta fish. They make great office desk pets... but like yours, mine always commited suicide by jumping out of the water.

Hang tuff and vent when you need too... and know my friends seem to be cooking me food, sending it home via my husband and checking in via email or FaceBook.  They seem to be giving me space.  I think they are afraid since I am younger than them and we are all living daughters of dead parents due to some chronic health issue...mine just presented first and packed a huge whammy.

My husband said they burst into tears asking about me.  He wanted me to call and comfort them... HA!... I have passed on it having my own emotions to work through.  I figure they need to deal with their own emotions while I deal with mine. I am not up for the "don't feel bad for me"'... yada yada... I am making new friends in community BC support groups and that has been very helpful...

However, I am all about my Gal Pals cooking my family awesome meals... it is one of my only real perks right now. The minute ANYONE asks if they can do something to help me... I am quick to tell them I need help with dinners... tasty casseroles or take out food gift certificates. For when I am just not 'up' for cooking... Work it... helps them feel better to love me tangibly too...

Hugz... Joy

Carmelle

wow! 5 post a day is harsh. i needed 20-30 to keep sane.

judging on stage is dumb. the worst thing that has ever happened to you is the worst thing that has ever happened to you. nobody gets out of here with you're 100% fine. nobody.

elimar86861

I'd encourage you to post the basic info. of your Dx in the tagline, especially if you are looking for information from others here, not just support.  That way, people that have a similar Dx are more likely to reply with what they have come across so far, and relate it to your particular situation. 

CoolBreeze

I agree that the five posts a day thing is harsh and should be revisited.  The beginning when you are first diagnosed is when you need to post the most.

I'm a mod on another board - a very, very busy board.  We do have spammers but we allow people to post as much as they want right off. We don't allow anybody to put a link in for the first ten posts, and we also have a very active populace who hit the report button instantly when they see spam. We have never gone more than an hour without removing it and banning the spammer and I would say 99% of the time it''s gone in five minutes or less.

Also, when they register they have to use a captcha type thing within the registration fields so that prevents a bot from spamming - when we get spam it's from a real person.

I think there is only one mod on this forum and maybe she doesn't have enough time to moderate it all day and night - who does?  We have four mods on our site.    I also don't know this software or why it''s set up the way it is. But, I definitely think the five limit post for ten days is really harsh and very negative to people who are terrified of having cancer.

As for the judging thing - I wouldn't judge anybody on their statistics. But, I will confess - sometimes I think people overreact.  If somebody has DCIS, stage 0 and a lumpectomy takes care of it, I get slightly annoyed if they make overly hysterical posts.  I do know that women are afraid and that diagnosis may be the worst medical thing they ever experienced.  A fearful post or two is one thing - of course, we all go through that emotion until we know our situation.  But if it's a chronic whining situation - well, I guess I get a bit judgmental.  Especially when I see what the stage 4 girls have to go through. I'm grateful to be stage II and that a mastectomy, chemo and herceptin is available to me - not sure why others aren't either.  

However, I wouldn't cast anybody aside, and I just generally don't respond to what I deem are overly whining threads.  I'm old enough to know that people who always see the glass half empty can't change.   Am I really the only one? I must be a horrible person then.

I'm sorry about your fish.  I have an extra 40 gallon fish tank I'd be happy to give you if you lived near me!  With a lid!    I used to keep tropical fish but had a horrible heater accident and boiled my fish (after ten years!) and decided I didn't really have the room or heart to start the tank over.