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What not to say!!

redcell
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Re: What not to say!!

i agree... just being normal is the best way. i do feel for people when they look awkward. i guess i wouldn't have known what to say to people before i had cancer... i guess it's just human nature to try to say something positive and encouraging.

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Re: What not to say!!

Well, actually Janet was not really bothered by the comment. In fact we had a laugh about it. I think we all put our foot in our mouth occasionally.

She is taking a wicked pleasure in watching people's reactions. She went today to take her mobile phone in for repair, and she had a hat on because it was sunny but also cold. She took it off when she was talking to the young chap behind the counter, but to his credit he handled it well. He even asked what it felt like having chemo "if you don't mind me asking". I think that's the right way, just talk normally and straight and don't try to make things better or anything.

(And, just for the record, she looks better than Sinead O'Connor. 🙂 )

xx

rachy7
Member

Re: What not to say!!

sometimes it is better to say nothing.

R xx

redcell
Member

Re: What not to say!!

jansman! that's awful and from a trained nurse in the profession! i think what people are actually saying when they say stupid things like that is "i'm scared of your disease and i'm glad it's you and not me". i think in some way they 'admire' our 'bravery' but come out with gormless comments to make themselves feel better....
i have just finished chemo and like your wife did not wear a wig. i've had stupid, stupid comments too...
'you have such a lovely shaped head'...
'you look as good as sinead o'connor'...
but this one grabs the biscuit - ... 'you don't look like a cancer patient at all, you look like you've gone bald by choice'...
oh please...!

chipper
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Re: What not to say!!

gah ! unbelievable

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Re: What not to say!!

I went with my wife, Janet, for her second dose of chemo today. Her hair started falling out last Thursday so I gave her a number one haircut yesterday evening. She has been firm that she will not wear a wig, which is fine because she looks great without her hair. She came to the hospital today with nothing on her head and feeling fine about it. So what did the specialist nurse in the oncology clinic have to say to her when we told her all this? "I think you are really brave going out like that". How to make someone feel good about themselves!

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Re: What not to say!!

Hi Everyone, Yes I second Lyn's comment that you find out who your friends and family are. I really dont know how I would have coped without my friends and they still help me through the bad days now. 2 years on. Most of my family never bothered.

Just after I came out of hospital in September 07 there was a BC nurse on morning television talking about how friends and family cope with BC. She said that you really do find out who your friends are. Some people just can't cope with your illness and either ignore you or make silly comments. She said you become closer to the friends who support you and the others just become distant friends. I remember thinking 'How awful to treat people like that just because they have difficulty coping with cancer' But it's absolutely true. It doesn't happen by design it just happens because you form a stronger bond with the people who have been there for you.

I too have had the 'comments' and everyone who I see seems to want to tell me about their illness, however mild, in great detail. Then they'll say 'Well you're looking well anyway'!!!

The 'best' comment was probably my husband when I'd been to see the plastic surgeon. He said 'I could understand you wanting plastic surgery if you were a youngster wanting to wear a bikini, but why do you want it at your age?'.

Love to all of you

Jan xxx

naomifel
Member

Re: What not to say!!

Yes, laptalass, I had that comment too - its unbelievable to think that we have to be careful what we do or say because it might embarrass other people. I know that it perhaps might be appropriate to exercise some discretion at times but when you're dealing with the shock of diagnosis, or struggling to manage the side effects of treatement, the last thing you should have to be thinking about is other people's embarrassment - or, at least, that's my view.
Naz

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Re: What not to say!!

Having cancer means you certainly find out who your friends and family are. During my treatment I saw my sister three times - and then it was because I had to phone her for a lift. An aunt and uncle (who are always on the phone when one of them has a minor operation/illness)didn't contact me once although they saw me just before last christmas a week after chemo when I was at my worst. I saw them at a family wedding in Greece a couple of weeks ago and explained I couldn't walk far (due to side effects from the tamox) and got - oh, why is that!

On the other hand I have a lovely caring neighbour and my work colleagues - even those I didn't know well - have been wonderful. I also have a lovely nephew who has always been at the end of the phone

My favourite comments

From an aquaintance just after diagnosis - oh breast cancer is nothing these days it can be cured easily! It wasn't nothing to me, especially as at that stage I didn't know the prognosis and my dad had died from cancer exactly one year before.

From a work colleague after my hair grew back curly - you are lucky, I've always wanted curly hair - yes but look what I had to go through to get it.

Lynn

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Re: What not to say!!

hi
first time I had bc I was 38 and had a mastectomy.
My sister in law said 'well thank god you're past the age of wanting sex and all that'
my sister could NOT believe that I was allowed to choose what sort of reconstruction I had on the NHS (she went private for her cosmetic implants)
Nearest is not always dearest, is it?!
yours sourly LOL
monica x

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Re: What not to say!!

Scotishlass, kids say it like it is, I was on a secondment with the Breast Care Team in the hospital where I work when I found the effin lump but decided until I had to stop working for surgery I wanted to just do the usual routine as long as possible prior to surgery. MMMMMM what did one of my bosses inform me at the 'One Stop Clinic' ?
Here I go (still raging) 'It would be better if you went home. The staff are embaressed, they don't know what to say to you!'
I hope after my rads are finished and I go back I will educate the ones I work with, the only person who said that I shoud work on as I needed to until I decided otherwise was my consultant.
Sorry to go back kids bring us all to the same level regardless,and yes I just love them.

scottishlass
Member

Re: What not to say!!

Hi All, I too cannot bear the "Oh but you look so well" and the "Oh you are so brave,I couldn't do it" oh yes.....well there is no choice deary.....I didn't choose want to loose my breast at age 39 but the choice wasn't really there. I also point out to them (Some of them really close friends) that on bad days I don't leave the house at all, and on really bad days I retire to my bed. I have paced the floor with a pain that won't go away but that is the side they don't see. They say but oh you are doing so well. Sometimes what is said doesn't bother me but sometimes I feel mad at the stupid comments. Another thing that niggles is when people look at you when you get out of the car. They see you parking in a disabled bay, look to see if there is a card on the dashboard then look you up and down as if to say "You don't look disabled!". I have been asked many times if I am disabled.....blooming cheek. Anyway thanks for the rant! Love Val

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Re: What not to say!!

I think most people I have come across don't know what to say Most say "you look too well to be that ill" or "you'll be fine" the best i get are from the teens I work with.When I was not looking or feeling good oneday due to chemo one student said " please miss don't do a jade goody now I can't do this work on my own."
Or "miss isnt having a bad hair day but a no hair day"

These kids have been fantastic and very supportive many of them with big problems themselves.

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Re: What not to say!!

Ive had all the comments 'you're so brave,' I could never go through what you have gone through', 'why do you want to have recon', (Im only 42!!!) etc... where I just smiled sweetly (cursing under my breath however!!)

This one though took the biscuit.... a week before my reconstructiion I was out drinking with one of my (closest???) mates who has a problem with her image and her weight! She took the opportunity to mention while whining that I didn't understanf how she felt that at least I didn't have to work to lose my stomach as I was about to have a tummy tuck!!!!!!!!!!! Needless to say that this one occasion I didn't smile sweetly.....

Kaz xxxxxxxxxx

naomifel
Member

Re: What not to say!!

I was astonished that a work colleague of mine recently told me "to let my hair down" when I said that I was meeting a friend after work.
I realise that it was said with good intentions but I was amazed by her lack of diplomacy.

Its hard not to take offence - and I do sometimes - but I do also laugh at the insincerity of some people.

Naz

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Re: What not to say!!

Bahrons - spot on! This one is priceless; a friend's surgeon on her query re reconstrction "Do you think it worth it at your age?" She's 52 and replied that yes, she does, so he follows up with "But it is only you who will see it" . Mmmm - obviously does not believe in sex over 50.

Jellylegs
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Re: What not to say!!

After waking up from my WLE I looked into my husbands eyes and he said "Ness where are the asprin,I've got an awful headache"

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Re: What not to say!!

Hi again Jane

Yes, it's the old 'people skills' problem, isn't it?

What they seem to forget is that every operation does some damage, somewhere and the effects can cause problems way, way down the line as well as immediately.

As for 'glee' - yes, that's the word!

Another accusation often levelled at bc patients is, incredibly, that they are 'vain', which I find astonishing. I don't consider it vain to want to be, and feel, symmetrical, balanced, in short how most human beings are for most of their lives. I have accepted that bc treatment may result in some deviation from this goal, but to be accused of being 'vain' simply because I am no longer like most other women is a bit b****y rich.

Off the soapbox now....

X

S

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Re: What not to say!!

Hi Bahrons - typed a reply which has disappeared! Think our consultants have been to the same seminar on tact and understanding. Mine is almost gleefull at the prospect of surgery and has great faith in it's ability to make everyone as right as rain.He says he thinks that we "ladies " worry to much...well, it is the body we live in , not him.

x

elinda45
Member

Re: What not to say!!

Another I've had after a double mastectomy from well-meaning friends is that ' I can just go and get a reconstruction when I'm up to it and no-one will know I've ever had anything wrong'.
Yes, that's just two 8 hour operations and finding fat and tissue from somewhere and then recovery time....Also what about those nipples? Think I'll know the difference and so would anyone else who saw them!
elinda x

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Re: What not to say!!

Jane

What a comment from your consultant!

A bit like MPs, some of them 'still don't get it' do they?

Yes....they can 'whip out' more bits, that's what they do best! No ovaries, violent trip through menopause, no womb, possible incontinence, to mention but one SE.

I'm a bit more in sympathy with the first comment, because he is correct that a lot more can be done for breast cancer sufferers than for many other types of this disease, but oh dear! Luck? LUCK?

'Less unfortunate than some' would be a better phrase!

My own onc, a few weeks ago, when I mentioned my ongoing (bilateral) lymphoedema problems, countered by telling me that one of his patients 'had it far worse' in one arm. I can't tell you how much that has helped me - not.

X

S

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Re: What not to say!!

That drives me crazy - my consultant, unbelievably, actually said when I was diagnosed " You are lucky it's breast cancer ; we can do a lot for it, other cancers can be fatal" - am i missing something here??? Turned out that the "lot they could do" means losing my breast, chemo, tamox - so how lucky can i get. I mentioned recurrance and he cheerfully said "We have lots of different chemos we can try and there is always surgery depending on how much and where it is". Re gynae problems on Tamox "We can whip your bits out and that'll cure any problems down there" I feel so reassured...

Love

Jane x

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Re: What not to say!!

Here's another one to add to the list - "well at least breast cancer is probably the best sort of cancer to have, because they can just cut off the breast and then it's gone", closely followed the fact that I should put it all behind me now, look to the future and be POSITIVE! NO!! Don't tell me to be positive! I know it was meant well, but it did not help. There, I feel better now!

maude
Member

Re: What not to say!!

concernedfriend

The fact that you have posted your question shows you are a sensitive person and she is lucky to have a friend like you. My advice is don't try to tell your friend there is a positive side to all this. It's horrible what has happened to her, just support her all the way through it. Take the cue from her - let her talk about it when she wants to and talk about other things when she wants to get away from her diagnosis/treatment for a while. I wanted my friends to treat me the same as always and still just think of me as Maude and not Maude with bc.

But please don't make any "jokes"!!

Good luck.
Maude xx

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Re: What not to say!!

I was told that "it's not proper then, you just don't have the top of your boob" - that's right it's "just" the top of my boob, nothing then!

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Re: What not to say!!

seems a good point to ask... what do i say? Just added a post, found out today my friend has breast cancer, don't know details yet, want to help and support in the best way. I know everyone's differnt, but .. I want to be there for her.

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Re: What not to say!!

Well, I have just discovered this thread and don't know whether to laugh or cry at people's ignorance/inablity to cope, I thought it was just my "friends" and family - several off my Christmas list now. Can id with lots of comments " no need to buy shampoo"; "you've always hated your boobs anyway"; "Whenever I think my life is bad I think of you". Great. Never had great relationship with mother and 3 brothers but thought they might rally now (especially as 25 year old son was diagnosed with Non-Hodgkins Lymphoma 3/52 after my BC diagnosis - going thru chemo too). Mother sent " Get well soon card" at beginning of May, nowt since, nothing from brothers. Best tho - nursing friend residing in Australia, sent long e-mail detailing her bug-spraying, new granchild, new job, golfing activities, then finished up saying "hoping you are well and positive things are happening for you all"!!!!! Eer - has she forgotten then, should I say? Am speechless.

cherub
Member

Re: What not to say!!

The one that really makes me laugh now came from a retired lady who lives round the corner. Years ago her sister had to come home from abroad to be treated for BC and the consultant who treated her just happened to be my cousin. She said to me "of course, my sister died" as if it was all my fault for being related to the Consultant!

maude
Member

Re: What not to say!!

Looloo

It really cheered me up when you said my post made you laugh.

I have gasped at some of the comments made to people on this thread.

At least we can laugh about it!

Love to everyone
Maude xx

cherub
Member

Re: What not to say!!

No 2 is the sort of thing my sister would say. She is over from the Middle East, has been here since Friday and haven't seen her yet. She is coming tomorrow and I just know she is going to say "are you not bothering with dyeing you hair then?" as I'm quite happy to be silver. TBH, I made an appointment to get it coloured last week, then I cancelled it because I was just doing it to avoid her comments. Totally the wrong reason and a friend we hadn't seen for ages talked me out of it. She told me I had a lovely face and my silver hair was fab.

When I was in hospital isolation 2 years back I was on a massive dose of steroids which puffed my face up. My sister turned up and said "oh, you look really fat at the moment, but my colleagues at work said you would on account of the treatment". The look on my OHs face was blazing and he can't forgive her for the way she has behaved since I was diagnosed 3 years back.

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Re: What not to say!!

Oh Maude! Thank you so much for sharing those. No 5 just tickled my fancy and I have laughed and laughed for the first time in ages.

Best wishes to all. LooLoox x

maude
Member

Re: What not to say!!

I hope you don't mind if I share a few with you:

1. A week before my mastectomy my brother said "if I were you I would take a loan out for £100,000 and go mad spending it." I think he was inferring I wouldn't be around to pay the loan back.

2. When I told my sister I had decided against a reconstruction she said "I suppose if you were one of those women who cared what you look like you would have one". Then she couldn't understand why I was bothered about the surgery - she said "you don't usually mind going into hospital for operations". I tried to explain to her that a mastectomy wasn't quite the same as a sinus operation.

3. I texted my friend's daughter to ask her to tell her mum I had the date for my op. She texted back saying "it will be so much better when you have had the operation". How will it be better? I will only have one breast!

4. I was talking to an acquaintance and she said "Anyway, how are you? My husband, John, died of cancer too."

5. A "friend" had been going through a difficult time with her utilities company. She told me she said to her husband "it could be worse - I could be Maude"!

Love
Maude xx

rosebud454
Member

Re: What not to say!!

Reading this thread reminds me of when i was on a weekend away. We were on a coach trip. It was the morning of our departure home and it was extremely windy. The coach driver walked through reception and in a loud voice shouted "keep your wigs on ladies, its very windy out there" !!
I was actually wearing my wig at the time, and me and my mum doubled up with laughter!!

Rosie x

chipper
Member

Re: What not to say!!

I am ashamed to say that I told my younger brother 'to keep his hair on' once when very cross with him - we were 13 and 10 and he had been through chemo - however, it made home life (he was nursed at home as it was terminal) seem more normal as we bickered anyway as brothers and sisters do

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Re: What not to say!!

hi all

I was having radiotherapy coz of brain mets and the nurse when she had put my mask on and set everything up walked out sayin enjoy.

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Re: What not to say!!

It is indeed very strange how some friends that you thought would be there disappear! My very best friend did exactly the same thing. I have supported her day and night for last 6 years after the break up of her mariage. From the day of my diagnosis, she stopped ringing, and I saw her once in 8 weeks and it has never been the same since. I don't feel angry funnily enough, a little hurt but determined not to soften when she will come running for help (will try hard but know i probably will). I have thought about it so much and wonder if they abandon us because they can't cope with the thought of losing us, but to be honest, i would hope that most people can put their fear aside for the sake of us, rather than being so self consumed.
But as you say, the most wonderful friendships have materialised through this bloomin awful ordeal for which I will be eternally grateful. I can cope with losing a breast, but find it more difficult losing a best friend. xxx

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Re: What not to say!!

Wow! no wonder these are ex friends. You make me feel so lucky. My best friend is living in America just now and I thought I would miss her so much, but she has been fab. She phones 2 or 3 times a week for a chat and has been home to visit me 3 times since I was diagnosed at the beginning of April. We've been on holiday twice and she's the only one who will listen when I want to talk about what might happen (my prognosis isn't good).

Less lucky with the rellys though. Husband, poor soul, just wants to bury his head in the sand. My brother and sister in law haven't been seen since my husband told them I have cancer. My workmates are the ones who tell me how good I look. I hate it that they have no idea how long it takes me to make myself up to look vaguely normal but can't bring myself to embarrass them by telling them. Maybe next time I should go in to work without the wig and makeup.

Jan

Little_H
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Re: What not to say!!

I couldn't have put it better myself Heidi! this cancer lark certainly makes you realise who your friends are.
My best friend has let me down soooo badly,I can't help feeling very hurt(& p...ed off!)
My husband saw her at work and told her I'd got breast cancer and I didn't hear from her for 2 weeks,then it was by text! She lives 10 mins from me and I've seen her 3 times since Jan,(the last time was when I went round to her,& she works part-time & doesn't have kids).
Jaxw,I too get fed up with being told I look well....I feel I should say,yes,it's the poison they're pumping into me coupled with the vomiting that's giving me this rosy glow!
It's amazing how some people have just disappeared off the radar,no phone calls,emails...nothing.It's been a real eye-opener.
Right,rant over,I'm not really bitter and I have to say I've experienced more unexpected acts of kindness and received more good wishes than not,

Love & hugs,

Little H xx

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Re: What not to say!!

What a cow!!!!

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Re: What not to say!!

Okay - i have a cracker for you...

I belong to another online forum (not breast cancer - a craft hobby i have...) and a "friend" on there sent me a personal message - i had mentioned i was concerned about the future whether i would end up with secondaries in the future etc...

Anyway the pm started "We all know you are going to die, xxxxx (another "friend") has said that you have a very bad prognosis" it went on to say she was glad i was being more realistic as "we all have to start facing the fact that you are going to die - yourself included..." (!!!!!)

Like i say strangely enough i don't consider either of them as friends anymore... and i pm'd xxxx to ask her what on earth had she been saying about me to people...? (this was all after i had finished my 6 months chemo and 2 weeks before i was due to have my mastectomy...)

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Re: What not to say!!

lizcat

I would have throttled my husband had he said/motioned such a thing and over 3 years later still would.

People are such insensitive sods.

kittyw
Member

Re: What not to say!!

HI all . You are so right Jaxw but its not only neighbours who vanish ive also found friends and relatives do to . a chance meeting with my sister in law 6months after diagnosis. she said im so glad ive seen you looking ok I didn't ring in cos I wouldnt know what to say.
My sister actually told my brother to stay away and not ring me as I didn't want to be bothered with people.[she is here three times a week bothering me with misguided sympathy].
But the best one was best friend who so shocked when i was diagnosed managed to recover after a few minutes and state ' God ill have to go on a diet because you will probably get so thin and look fab'. If only.Same best mate also asked that I don't mention IT around her younger sister[42] as it might upset her. you have to laugh or swear
take care all

jaxw
Member

Re: What not to say!!

I have a frightenly healthy look about me, which is, obviously great most of the time, but I HATE it when I meet someone I haven't seen for a while, and they say 'how are you?' I start to tell them, but they always interrupt and say, but you look so well!!! I have been bald, sick and fatigued and still they say it! I am now permantly disabled, on crutches, have very bad lymphodema, and they STILL say it!! Do you think I should get some advice from a goth as to how to sometimes make me look pale and delicate, so I get a little sympathy every now and then?!! Only kidding, but it does drive me up the wall sometimes. Can't they see beyond looks? And of course, it is 'all in the past now' even though I am having ct scans for possible 2ndries, but you can't go into detail with near strangers can you?
On the other hand, I have lived in same road for over 20 yeras, and my neighbours never once asked me how I was when I was bald, and undergoing treatment. In fact they all seemed to disappear behind their front doors as soon as I came out. Strange how people react.

lizcat
Member

Re: What not to say!!

Heidi,

Never mind your 6 yr old - my somewhat older OH told people 'Liz has got to have one off' accompanied by the said chopping action but at least it was only to people who asked how I was - I had chemo first. I just saw the funny side of it and excused him cos he looked after me really well and I think it was his way of dealing with it and telling people.

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Re: What not to say!!

I have been really struggling with the SEs of tamoxifen, to such an extent that about 10 days ago my onc told me to come off it for 2 weeks to see how I felt. The next day, still feeling absolutely cr*p, I dragged myself to the hairdressers for a cut and blow dry. My hairdresser knows about my bc, but a young girl was washing my hair and came up with the "what have you been doing?" line. "Not much" says I, not wanting to go into details of going for rads every day etc etc. "Don't you like this hot weather then?" she says. "I've not been feeling too good," I replied. "Well, nothing's as bad as being stuck in here all day with the sun shining outside and everyone going past eating ice creams," she sighed......... No, of course not - poor thing.

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Re: What not to say!!

My personal worst things to hear are "You are lucky they found it" - how lucky can a girl get? Another;"You must feel better it's all over now and you can get on with your life", "No point dwelling on it", and the wrst of all - "They can do such marvellous things for cancer these days,they cure it all the time, it's not like it was years ago". I usually ask what has improved and they are at a loss. The other day I told my aunt who said that that my hospital sadly had not caught up with whatever this marvellous thing was, they were still soldiering on with surgery, chemo and rads which do not guarantee a cure. She said "I'm sure you are wrong".She couldn't let it go so she said "And they gave you a new one (recon) women pay a lot for that surgery, so you have done well out of it really". Almost pulled my top up to horrify her with Tit of Frankenstein but she is old and stupid. Give me (us) strength.

Love

Jane x

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Re: What not to say!!

I think my most recited comment made so many times is

"At least you still have one good breast!"

Also, when I was diagnosed last August, and i told son who was then 6 at the time, we were very matter of fact and upbeat etc etc. We went to the Isle of Wight for a few days before my mastectomy, and he would tell virtually anyone, ice cream sellers, deckchair men, anyone really "my mum, is going to get her boob chopped off" whilst making a chopping movement with his hands!! kids!!! xx

hope
Member

Re: What not to say!!

Hi all,

I have a good one texted to me yesterday. I had just been to get the results of my wle pathology tests to find that I need to go back to have a mastectomy plus reconstrucyion and after passing on this information to interested parties this "friend" texted me and I quote..."one way of getting a new boob job"....!

So wrong, on so many levels!!!!

(I know it comes from the wish to make light of the situation in the way I do so I do forgive her!)

Lee

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Re: What not to say!!

Hotel Chocolat! Instantly forgiveable!!!!!!!!

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Re: What not to say!!

The worst thing is they mean so well, don't they? And they'd be so upset if they realised how these comments just pierce you through.

Just to pervert the course of the thread, one of the best things said to me was in a letter from a friend (in her 80's) who I haven't seen for years but who heard about my dx on the grapevine. (Incidentally the letter accompanied a huge box of Hotel Chocolat!)
She said, "How could something so nasty attack someone as lovely as you? How bitchy!"

It made me smile 🙂