What happened to my first BCNA thread about this stuff? It was 25 Ways to help, or something, and had so many tips and "please don't"s from members. :disappointed: I think I was keeping track of them in an old blog article. ... I never posted my blogs but I kept a lot of drafts - because nothing was ever really finished I guess.
!!!
Okay it's about a half hour later and I totally found it. I had to reset a password and everything. hahaha :lol:
Swears warning for the third dot point. I left it in, it's an important swear.
Unpublished blog reads:
This 'don't list' is compiled from the responses of may different people, and as such is a reflection of many different personality types and breast cancer situations. They are by no means universal, but most were repeated or supported.
The three most frequently requested don'ts :
- Don't tell me "it could be worse" to "stay positive" or "cheer up"
- Don't question my decisions or act like you know what's best for me
- Don't tell me stories about people you know who have or had cancer.
- Don't tell me stories about your friend/relative/acquaintance who "had/has cancer" and especially don't end that story with "they died". it's never the same. Sidenote; You know what your "my friend with cancer" stories tell me? That I'm going to end up one. I'm not a flourish for your conversations.
- Don't tell me all about the "cure" or "treatment" you found. Depending on who you ask vitamin C and caffeine are both cancer cures and cancer food. If whatever it is worked, big pharma would have packaged it by now.
- Don't tell me my diagnosis sucks because of how it will change appearance of my breasts. I have a life-threatening disease but oh, what a horror you must be experiencing having to, what, lower your aesthetic expectations of my tits? Get in the sea, shit head.
- Don't mention cancer every time you see me. It's already taken up enough of my life. Let me breathe, just follow my updates or let me start the conversation. Side-note; What volume would you like me to talk about your private medical conditions while in public? Shall I shout "So sorry to hear about your anal cyst!" over a room of friends and strangers? No? Cancer is medical, a little respect for privacy please.
- Don't tell me what I can and can't eat, or rush over to me with the new "cancer diet". There are rules for eating and drinking during chemotherapy, but the rules around diet with cancer is the same as for every person on the planet without it.
- Do not ever speak to me in terms that imply my having cancer is an inconvenience to you. Especially one that I should be apologising for. You are entitled to your feelings, but find a support group to vent to and never complain to a cancer patient about how inconvenient it is they haven't been able to do things like they used to or that they need your help. It's sad that this needs to be said.
- Don't tell me to "cheer up" or "be positive" when I'm feeling anything but. Sometimes I just want to be honest about how I actually feel and have someone just agree that yeah, it does suck
- Don't tell me that it "could be worse" or "isn't that bad". No matter the prognosis, it's still cancer, not a cold.
- Don't tell me "You'll be fine". Be kidding. I won't be "fine" over treatment if I had it, sh*t hurts man. IF I come out of the other side of it, I have to deal with the mess it made. Do I have a job? Can I work? You don't know if I'll be fine and insisting that I will only really makes me think about how completely not-fine everything could potentially be, so let's not even go there in the first place.
- Do not tell me I "look well/fine". And definitely don't add "for someone with cancer". Why does how we look matter at all in this situation? Doesn't look like the illness hasn't incapacitated or killed you yet, good show! Pro tip: That image of a bald emaciate as a cancer patient doesn't really cover many people these days, a bunch of us don't lose our hair and gain a bunch of weight, so kick that little stereotype to the curb whenever you're ready.
- Don't tell me you just had the "worst day ever" or "FML" unless it really was. Leave the drama behind, I don't need it. Say you had a bad day, I still care, but it's in pretty poor taste to say "kill me now" over getting mustard on your shirt while I'm fighting for my life.
- Don't say "If only they'd/you'd found it sooner" or ask "Why didn't they find it sooner?" - I don't know Jacinta, when was your last routine biopsy? What good does that do anyone? If if's and but's were candy and nuts then maybe I wouldn't need so much treatment? Stop.
That's where it ended but I want to add
Don't refer to an all-clear as being "better now" or "cured". Because recently, in pain and exhausted from hormone therapy a while after my all-clear I decline a social event on medical grounds only to hear
"Oh, but I thought you were better now". My goodness, the cancer is gone to my knowledge but the treatment hasn't stopped, the pain is still very real, and I'm still struggling like crazy cognitively and while I'm not living with an illness anymore I'll probably be living in the wake of it for a long time.
