Supporting women whose lives have been touched by breast cancer

Other peoples reactions

A recent thread will ring a bell with all women with breast cancer and airing it might make 'well meaning' friends and relations think twice :

People keep telling me this all the time.

"Don't dwell on it,"
"The cancer belongs to the past"
"Don't read about it on the internet"
"Don't post on or read support sites, keep off the live chat."

" You look so well (meaning fat?)"
"Be happy that you are alive"
"Just forget all about it, you are cured now"

etc, etc, etc

I am sure that most of you have heard things like these a number of times and some of you are just as sick of it as I am.

Do people think that I enjoy being reminded of this?
How can I forget?

I take my AI pill every day,(I know, lots of people take medication regularly and I have done for years long before bc.) But there is still one more pill.

I wear my compression sleeve and gauntlet every day.
I go to MLD once a week

Once a week I wrap my lympho arm over night. It takes about half an hour to put the bandages on. I hate sleeping with them.

I always ( I mean ALWAYS, even to the shops) carry with me a bandaid, something to clean a wound with and some antibiotic liniment so I can treat the smallest cut immediately.
If I leave the house for more than a few hours, I put my antibiotic pills in my purse as well, just to be on the safe side.

I used to love playing the piano - can't do it
I used to go skiing (downhill) - can't do it because of my arm.
I can't sunbathe any more

After more that three and a half years, my armpit is still numb, can't feel it when I am putting on a deodorant.

I could go on and on................

I know so many of you are so much worse off and I know I have so many blessings to count.

But I wish people would stop telling me to forget.

I'm learning to live with it. Sometimes it's very hard, but I wouldn't go for the alternative.......... so I keep praying and hoping that every little pain or ache is not a recurrence or a secondary.

So really, I'm ok, it feels good just to get it off my chest.

Thanks for listening.

PS; What set this off? I met a friend (long time no see) when I went shopping this morning. She really knew how to pick her words

They mean well but they don't understand that you have to deal with it every day. I think many people just can't cope with the idea of you having a chronic illness - and they don't understand that we need to let it out now and again.
I've been so lucky in my support at work and from most of my friends but I do get this sort of stuff too. In the end I guess that we have to choose who and how often we tell the truth and in between we practice pretending. Actually the pretending strategy can be quite a good one as it definitely helped me get out of my depression - I pretended to do things I used to enjoy and eventually it started to work.

I've heard exactly the same - my old GP was the one who told me to "get on with my life and stop dwelling on your mastectomy".

My mum was the one who told me to get off the internet forums and be thankful I was still alive. No one can know what you're going through inside unless they've been there themselves. There are moments when I forget what I've been through and then when i see my scars, it's a reminder.

people don't see bc as chronic - you're either in chemo, dying, or cured. And they want to go back to their normal - back to how it was for them before you were diagnosed. They just don't take on that not only has your body changed, so has your mind. I have somewhat the opposite issue - no-one I know, including family, has ever referred to it or asked how I'm doing - perhaps because I didn't have chemo so I never looked "ill".

I can so relate to what you said. I too am in the same position with most of my family and friends telling me the same thing, especially coming on here and chatting to give and receive support, to let off steam and to talk to those who understand exactly what you mean when we air our hopes and fears. My s-i-l even said "There is nothing wrong with you, it's all in your head".

Have you noticed how the people who say these things have no experience of illness, especially a chronic condition? What do they think gives them the right to lay down the law on a subject that is , essentially , unknown to them? Would they go around in a foreign country telling the natives they were all talking the wrong language? Come to think of it, many people do! If it's not their own native tongue it must be wrong!

I don't know the answer to these so- called experts who think they have some god- given right to tell us how to behave in the aftermath of a cancer diagnosis,or what we should or should not do. I just try to ignore the comments that could/ might/do upset me, as much as possible. Occasionally I do try to put the record straight, at present I'm on a bit of a mission to explain that I'm NOT having " A boob job" NOT having silicone implants; NOT having breast augmentation, as one medically qualified friend put it , but am actualy having transplant surgery - that seems to stop them in their tracks and think, before they realise it is my own tissue that is being transplanted.

My own pet hate is people who tell me " I know just how you feel" when they have no inkling whatsoever of how I feel. As for the concept that "the cancer has gone now," " It's easily treated these days" and those kind souls(!) who all tell me they know someone else who had Bc x years ago and is fine now........ I just want to scream SO WHAT??? How does that help me exactly?

Think I'll get off my soapbox now
the bottom line is, ignore anyone who says anything you do not want to hear, or anyone who is talking tosh, to put it politely and focus on you and things that help you to get through the day

My OH has it in a few words " no one knows until or unless they have been there, I think the support you give and get from those wonderful ladies beggars belief"

Says it all really