Unfortunately they are!
Dx
Barbwill - unreal! COmpletely unreal! Reminds me of when my daughter had ME for years and ended up in hospital with something else acute, and my boss said “I find your daughter being ill very stressful”!!! HE found it stressful!!??!!!
as for your “cheerful” friend Rachel - I’m speechless! Some people just cannot cope with anything real can they? Don’t know why they bother to ask how we are if they don’t want to hear the answer. Mind you, you soon learn which people DO want a real answer and who to just say “fine” to (and we all know what F I N E means!) Jane
If you’re feeling strong enough and not too weepy at the time, I find that a suitable response to the “you’ll be fine” kind of comment is “this disease may well kill me in the next few years.” And then say nothing. That usually provokes a gulp or two, unless they’re REALLY stupid!
The only person who has got away with saying “you’ll be fine” to me is one of my SILs who has also had breast cancer. I have two SILs who have had breast cancer, and one has made more of the dumb remarks than you would think possible, I just bite my tongue for fear of upsetting her-she has had bad depression since her treatment.
The other one, bless her, said recently " I know you will be OK because I dowsed you"-there’s no answer to that!
My usual response to “You look so well!” is to say “You mean I’m pink and fat?” which stops them from going on.
My response to the ‘you look so well’ comment is usually ‘I know, looks can be deceptive can’t they?’
Dx
Like lots of others, sometimes don’t know whether to laugh or drop jaw in shock at some of the things people have said to them on here, but here’s another …
I have close family member who pushed her GP to refer her to breast clinic for screening after I was diagnosed. I had tried to be very reassuring about how sensitive and professional I felt staff had been when I went to the ‘one stop shop’ clinic (though she would be going to different hospital)
She has just emailed me to say she has all-clear (hurrah!) but that it was awful experience, clinic was noisy and rushed and doctor a bit off-hand. Then said she’d probably give it 2/10 as patient experience, while mine probably rated an 8 or 9.
Errm - think she left out the one significant difference? What we wouldn’t all give for that 2/10 …
una12, I had the same experience yesterday in hospital. Two women were talking about what they were there (not cancer) and were complaining a huge amount about having to wait for the appointment. I spend half of my life doing that at the moment so waiting is second nature to me now.
I have to say, I seem to be one of the happier people around me at the moment, everyone else is complaining a lot about their much smaller problems. Maybe that’s what life is about and maybe I will live happier now knowing I have a critical illness.
hello all, I am now 6 years on but pop on occasionally to see how you are all doing…I had a few intersting comments, not least, my mothers, I don’t think I can bear it! or my bosses, I’m not going to tell my wife as it (BC) killed her mother and I don’t want to upset her!
However, from this great distance, I now find myself on the other side as my cousin is just finishing Chemo and a friend is just about to start it…from a conversation with my friend, I found myself saying some pretty trite things (I just wanted to help)…so, can I draw your attention to the well meaning bit of the subject and ask you to be sympathetic to (mostly) caring people who just don’t know what to say - and those who don’t know what to do, so do nothing…and, it has changed my life, I understood at last how much I was loved (awesome thing to realise)and, my lovely husband and I stopped thinking about moving to the Lakes and HAVE moved to the Lakes and it’s wonderful. Without BC, I suspect we would still be talking about it!
anyway…sorry to go on, feeling a bit preachy now :o)
good luck to all of you
xxx
You make a very good point, Jan, one that does need to be remembered when it really is well-meaning, but there’s also the education bit. So many people think that because we LOOK well that we FEEL well all too often it’s purely down to careful application of make-up and smile.
Some of the responses are “I wish I’d said something” comments, and even though I do come out with stuff in response to remarks, those responses are delivered in the same spirit as the original comment, so unless someone has been really nasty to me, it’s more a case of letting people know what the truth of the situation is, warts an’ all, rather than because I want to be mean. I don’t see there’s any problem in dispersing the “pink and fluffy” image a lot of people have about cancer, and when someone says to me “so that’s it, all done now” they might need to know that no, it’s NOT all over, treatment goes on for another five years, including a year of IV, and that’s if it doesn’t come back in the meantime. Too many people seem to think that once chemo’s done and dusted (or for those not having chemo, once surgery is over) that that’s the end of it and you can “put it all behind you”. While I do intend to do that as far as I can, I will know that it isn’t just sitting there in my past, it’ll be on my shoulder forever.
For the first time in months I went into a local shop this morning and the assistant asked me if I’d been okay as she hadn’t seen me for ages. I told her I’d just completed surgery, chemo and rads for breast cancer and she said’ oh that’s awful but look on the bright side - you got a decent hair cut out of it all at the end’!
I know she meant well but she was a bit stunned when I said that I was wearing a wig as I don’t have much hair and I really miss my long hair! Still not sure what to make of the decent hair cut comment!
Nymeria
Hi ChoccieMuffin (nice name)
I’m sure you’re absolutely right and the majority will respond kindly or humourously to whatever is said, and people do need to understand cancer and how it works, and how long it all goes on for and indeed, stays with you forever, but, frankly, I didn’t have a clue prior and probably wouldn’t want to be educated (too scary), and even now I do know I found myself talking rubbish!
I just felt as I was reading the comments that I wanted to put in a word for the other side…and ask another question of everyone…what would you like people to say? do? - serious question…personally, I wanted to be left alone and to get back to normal and anything else was a distraction…
Jan
The comment I have had more than once especially since being back at work is “Oh well - at least you haven’t had to have a mastectomy only a lumpectomy!” Yes I suppose this is true and of course I should be very grateful that I have been left with a rather wizzened deformed boob with semi-inverted nipple which apparently is likely to decrease further in size and harden after rads and has a wonderful blue hue to it which will stay with me like a tattoo as a permament reminder of what I have been through. Oh and by the way I quite probably won’t be able to have any kind of breast reconstruction either - but hey never mind!
PS No offence to anyone who has had a mastectomy of course. This is just how I personally am feeling at the moment.
Love Lynn x
To answer your question Jan123, I prefer people to ask questions rather than offer trite platitudes or make assumptions. For example, a colleague has been interested to hear about the various treatments and asked questions and offered symapathy if appropriate. Also yesterday I went to the hairdresser and it was someone different. I explained that as well as my long hair sides and back, I have a lot of very short hair on top which is growing back after chemo. He asked whether I was in remission and I explained that the cancer had been cut out, I am still having treatment (herceptin) to try to stop it coming back.
Swift - there’s no such thing as ‘only’ with cancer. I have had a mx but any surgery is mutilation in my book.
This is a brillaint thread!
i finished chemo last April, but after a bad recon, i now face the dilemma of deciding which recon to go for next, in order to give me a good outcome and stop potential problems in the future.
Back to this thread!
You look so well - No i bloody don’t, and you know i don’t!
Your hair will grow back - But i want it back now!
You are so brave (really hate this one!) - Bravery is when you dive into a river to save a drowning person, or risk your life in a war zone as a soldier - bravery is about choice! Why would anyone CHOOSE to be mutilated, poisoned, burned, have their hormones messed with and then face more surgey , because some surgeons are so bloody incompetent???
You really suit short hair - I preferred my old hair thanks!
Once treatment is over, you can get back to normal - Actually , two years on, and i still feel quite fed up at times, i still hate my hair, and i want my TWO boobs BACK AS THEY WERE!
You are an inspiration - To who?
Naz x
Thanks for support Nottsgal for your support and quite agree with you re platitudes. Oh- just remembered another amazing one I had from a consultant at work when she asked me how I was doing. I explained that I was about to start rads and the response which was said humourously was “That should keep you busy for a while then!” Yeah - great.
I agree Naz - this is a great thread. Seems you can really get things off your chest that have been brewing up for a while. Very therapeutic.
I’ve lost count of the number of people who, on hearing of my BC and before they’ve heard anything else about it have instantly said, “Well at least they caught it early”.
OK, I’m not stage 4 thank goodness, but I don’t think grade 3 stage 3 with 50% nodes affected is particularly early.
I finally said so to a friend in work on Monday, then also told her that I had a 25% chance of it killing me within 10 years. Not my usual tactful, treading-on-eggshells self but at the end of my first day back at work I was bl**dy knackered.
Her response to that? “Oh well, that still gives you 75%” WTF???
So she’d jump out of a plane if her parachute had a 25% chance of not opening, would she??? No, I didn’t say that to her but maybe next time…
Jane xxx
Jan: “what would you like people to say? do?”
Say: Oh, that’s b*****k*
Do: Hug me.
That’s an honest reaction from someone who doesn’t know what to do or say and would actually make me feel better.
“Hair that’s 1mm long really suits you, you should keep it like that afterwards” - now that really *IS* a load of b*****k*
Hi All
Was coming home from hospital today wearing what I think is a rather fetching hat. Waiting at traffic lights outside ONC dept with window open when two young lads pull up next to me "What the f**K is with the hat lady shouted the passenger ( I am assuming trying to impress the girls in the back!!) So I turned and removed it to show “Lovely Shaped Bald Head” Is this better I asked to which he turned a bright of red and put the window up quickly!! I then replaced said hat and giggled to myself as he wouldn’t then look at me as we travelled through 2 further sets of lights together.
I hope that may teach him to think before he opens his mouth outside the cancer hospital
Jill
Ninja i am so with you on the hug thing - one of the guys at work that has known about the bc from the early datys gave me a big hug when wev chatted yesterday, and it was worth more than any words. Madev my day.
I agree - hugs are worth lots. When I returned to work I was very touched by the hugs and kisses that I received from colleagues - particularly since they’re nearly all rather nerdy male engineers. When words fail a hug is worth a lot.
Sarah x