A colleague at work who was under the impression I was having both breasts removed commented on discovering it was just one ' Oh thats much better, I was so devastated!' Another on hearing that I hadn't enough tummy for reconstruction ' that will teach me to be so slim!'. Many others offered me theirs!! On discussing loosing hair 'well you look like you have a nice shaped head!'
And I always hated being told I was brave but actually I realised that to be truely brave you have to be truely affraid and I was, and still am s**t scared!!
Here here on the brave thing... my Mum said I was brave.. I said no I'm not, I'm terrified.
She said of course you are, you're not stupid and that's why I say your brave... any idiot can stick their head in the sand and delude themselves.. you're not doing that.
of course this is an example of what to say rather than what not to say. :)
It's a difficult one, and I really don;t know that I would have known what to say if the shoe was on the other foot. Reading through some of your examples, I realise I have had people say dozens of things to me which I could have taken the wrong way or been upset by and wasn't because they sometimes had a point, although their point may not have helped at all.
I remember the day of my dx I went straight over to my best friend's house and he was absolutely fantastic. He had nursed a friend through chemo so was familiar with it, and rather than just giving me tea and sympathy he went through a kind of action plan for me. At one point he said 'so see, this isn't that bad!' which might sound callous but I know what he was doing was making me feel like I had options and control over the situation, and in a way he was right because the fear of surgery and teh immediate aftermath of dx was far worse than the experience of surgery etc.
I find that I am tolerant of the comments of those close to me but irritated by acquaintances/ less close friends.
'Your hair will grow back' is not a comfort, 'you're so brave' is indeed patronising... 'You hair might even grow back a different colour, and straight instead of curly! ' (this from my onc)...B*GGER OFF, I don't want a flipping makeover, I want to be myself.
But the most insensitive comment came from my Dad shortly after my diagnosis...because I had mostly DCIS (but also multifocal malignancy), my parents got it into their heads that nothing was wrong. He saw me crying and said, 'you need to stop making such a song and dance about this, you haven't got cancer, you haven't even got a tumour.' That, I couldn't forgive.
when I was diagnosed just before christmas my dad said this will make things very awkward for christmas, too right and so did his bypass operation which was a week before christmas the year before. Ha ha
Hi Guys I have stumbled across this thread by accident and I can honestly say it has made my day! I thought I was the only one who got mad at the 'brave', 'amazing', 'strong', 'don't you look well?' 'I know someone who had that and she's fine!' comments. I have only read a page or so and I've bookmarked it to come back to later because it's so funny. The worst one for me was when I went to visit my work place and a close colleague called me into her office and told me she had a spot on her back and would I look at it? I duly did this and said I thought it was a blister (her bra strap was obviously too tight and rubbing) - she then replied - wait for it - Do you think it's Cancer? There's me standing there with one boob gone after a mastectomy and lymph nodes taken out, two weeks after my operation and she's asking me if she's got bl***y cancer! Didn't realise that people with BC were automatically qualified to diagnose skin cancer did you? Sorry but if people can't say anything helpful then I wish they wouldn't say anything at all. Will be back later to check out all the posts! Take care all xx Carol xx
My grandma who died last week aged 98 - on hearing about my 38 year old sister's breast cancer four years ago broke down, very upset. My sister phoned her to reassure her and ended the call by saying 'well grandma - see you at Christmas' to which my grandma replied 'Oh I do so hope you're still here then...'
I nearly weed myself laughing at grandma's funeral last week when my sister said under her breath - 'ha! knew I'd outlive the old bugger!'
On a more serious note, as a sister, it is sometimes totally impossible knowing what to say. I have heard all the insensitive comments and wonder if I've ever made any. I'm so careful what I say that it becomes really difficult. We once had a very difficult phone call where she was angry and scared and I couldn't say anything right but she wasn't crying - I just ended it by telling her I loved her and she then broke down. It's so hard for everyone. My mum sometimes tells her everything will be OK and I can see my sister glare at her - because of course it's not ok - but I know what my mum was doing or trying to do.
Its very hard for people to make what is considered as the 'right' comment - whatever they say is wrong. We all want to be treated in the same way as before dx, so if someone says 'I hate my haircut/colour/blow dry, we have to accept that is exactly what they mean - no patronising, no insensitivity - just everyday chat and comment.
My bestest friend in the whole world who also happens to be my sister is working her way through treatment for BC, mastectomy, chemo (without steroids as she is type 1 diabetic) and starts week 1 of 5 weeks of rads tomorrow.
You would imagine that being my sister and my best friend that I would know what to say to her - but ....... sometimes I have to think. How awful is that ?? I cannot be sympathetic because that would mean that I truly truly understand what she is going through and the honest answer is that I dont - I cannot possibly know what she is feeling physically or emotionally. So I try to be empathetic - try to imagine how I may feel if I was in her shoes - but reading through this thread, I realise I have said some of that stuff 'you are looking well today' - how shite do I feel now ?
Having said that - I am determined that I will never be the person who crosses the road to avoid an 'uncomfortable' discussion - better to say something slightly innapropriate than to pretend that nothing is wrong ??
Thankfully now my sister and I have got to the point where we can talk about how she REALLY feels but it has taken some months.
Love to all of you who are suffering either as patients or as friends and carers - it is so easy to get it wrong and believe me, that is the very last thing I , or anyone wants to do.
This has had me very amused this morning & inevitably I've had all the 'you look really well/better than you did before", you've been so brave/inspirational" etc,etc remarks. I just thank them for their remark.
To be fair, most people don't know what to say & are frightened of upsetting both you & themselves by saying the wrong thing & ending up in tears. Plus I think they say these things to convince themselves you'll be ok. I've seen the disease from both sides as my mum & both her sisters have had it & in an awful way, I think this helped me deal with it & people's reactions (including the GP - I'm so sorry, just like your mother !!)
My sis-in-law came out with the remark that her asthma was far more serious than my cancer (stage 3 but then found small bone mets) - at least they can cure cancer but you could die from asthma at any time ( I have mild asthma as well)
Friend of my mum's after telling her I spend my time off work trying to go for short walk on the prom & getting out a bit - oh that's a good lifestyle to have. Same lady whose daughter has rheumatoid arthritis - at least you'll get better, Clare will always get worse.
Then there's always the doom merchants - ooh, so-and-so had that & died within months, blah, blah. My prognosis is not good but I'm planning on being in the survivors percentage !
I just take the good comments & ignore or laugh at the rest.
One friend said to me - when I was waiting for biopsy results - 'you can't have cancer because you would have lost weight, I've never heard of anyone your size with cancer' (I'm a size 20!)
Absolutely hilarious. Trouble is the remark your friend made is the absolute epitome of how many people who have no experience of cancer view it.Until I went for radiotherapy and met loads of others with breast cancer, I too was probably guilty of expecting people with cancer to look ill. It was quite confusing to me that most of the people I met looked like they were positively glowing with health. I even explained to my family that I looked good and had even put on weight because I was worried they would expect me to look like a skeleton walking.
I'm all genned up though now and having studied the 'what not to say' thread, I'm doing my best to make sure ' I don't say any of these things to anyone in the Cancer Centre.
A friend on the phone the other day said " Oh you sound really well" !! Thats as good as "Oh you look really well". I just wondered what you are supposed to sound like with BC!
recently people have been telling me I look really well (I'm 4 months post treatment) and are only now telling me how "drawn", "waxy" etc I looked during treatment, when of course they were also telling me at that time "you look great"!
I just have to laugh and say "Are you now telling me I looked crap ?- I knew it!!". I cant blame them for one minute, what else could they say!! Love to all
I have had a number of friends and close work colleagues excuse their extended lack of communication with 'I thought you might like peace and quiet' or 'I wanted to give you some space' - for 3 months!!. Some even ask my 16 yr old daughter at school how I am, claiming they don't want to 'bother' me! She politely tells them it would be no bother, I'd love to hear from them, an email or text perhaps. I'm still waiting.