well meaning (but annoying!) things people say!!

[Lavenderlassie]

Aw, Lottie, knowing it is going to happen doesn't make it OK when it does.
My OH erred in the opposite direction, kept on saying "perhaps you won't lose it" which a) meant he maybe couldn't cope with a bald me (he did) and b) meant it had been a stupid thing to do to get my hair cut very short before chemo 1 so as to make the loss less awful (nothing stops us minding-and crying-but then we get on with it)

[lottie63]

Er Just a little thoughtless !!! MEN.....

Day 13 after 1st fec and Hairs decided to leave me

ME- ( crying ) OMG its coming out by the handfall look ..

HUSBAND - you knew it was going to happen

ME - Oh silly me thats ok then !!!!!!!!!!!!! or words to that effect

Me thinks he knew he had said the wrong thing as he made dinner no fuss tonight

Hugs to all x

[grumpy]

Liz

bless The Man - he's soooo soooo good!!

so glad all went well with your op - let me know when you're up for a coffee/lunch and we could organise something.

tried on bikini top today - looks OK-ish so that's one worry taken care of!

grumpy
xxxx

[lizcat]

Oh grumpy - love the replies, particularly to first one having been in that position til last month! By the way, I am still delighted with my second mx. He who is the wonderful surgeon excelled himself again.....Enjoy your Easter, don't eat too much choccie!

Liz x

[grumpy]

Had more comments about lopsided boobs -

1. Her - mine are lopsided cos I've breast-fed 3 babies, why don't you pretend you've had babies?

Me - why don't you pretend you've had breast cancer?

2. Onc - 90% of people (men?) won't notice the assymetry

Me - 100% of people (women) who have seen them have spontaneously commented OMG you are all lopsided.....

But at least my scars just look like little creases!!!

grumpy

[Guest user]

Don't knock the expertise of an RAC diagnostic... I mean, is it worth shelling out for a new alternator and try to keep the durned machine running another two years, or will a two week bus-pass see me out? I got these big decisions to make, things to plan for here. BCN positivity school don't seem quite geared up to these questions. The clinical cancer stuff is relatively straightforward, it's all the other decisions I find hard?

[livlassie]

Absolutely loved the RAC man and the psychic taxi driver! I too have had people assure me that they "have a very good feeling about " my cancer. Lucky them!
xxx

[Lavenderlassie]

And it is amazing what polite people like it as the response, Choccie!

[ChoccieMuffin]

A friend of mine told me her diagnosis (ovarian cancer) and the first thing I said was, "oh, bu**er." And that wasn't a double T.

She said afterwards that that was one of the best responses she got.

[grumpy]

One thing I've learned from this BC stuff is NEVER to say you'll be fine, when folk tell about their ill-health. Instead I say something like - oh dear that sounds grim/hard work/painful etc then ask what does your specialist say/can I do anything to help/how's your treatment going - in other words try to connect and leave the way open for further chat if desired. And I NEVER EVER say I do know how you feel - because I don't, I only know about me....

cold and wet grumpy.....

[Gilliancw]

Hi

Im due my surgery next week, if I had a pound for everytime someone says don't worry, you will be fine, be brave. I would be a very rich lady. I know they don't know what to say at times like this but it doen't make me feel better. If only they could understand how I really felt.

xx

[yellow]

hi

your responses are starting to make me laugh which is a good thing, this cancer journey sucks, yet so many people know so little about it. Nothing like a little bit of home spun philosophy. What I am going to say next may get me into trouble but what the hell. I was once told that opinions are like A...holes, everybody has one.

cheers

[ChoccieMuffin]

GMT that's brilliant !!! SO glad you got the " all clear" from the RAC man, it must have been SUCH a relief for you!

[keepthefaith]

LOL, GMT. Reminds me of a trip back from an onc appointment on day in the winter, the man talked non-stop through a 30 minute trip back to my house. I was exhausted and could barely put up a coherent sentence! He told me he used to be a psychic nurse before being a taxi driver (ooo... kayyyyy!) and that he "knew" I would be OK!!

So, obviously the taxi driver knows more than my medical team and myself! But then he is psychic......

[GMT]

Hi, Had a good one last week, my car would not start and called rescue services. Man kindly fixed the car although I didn't have home start but then asked if wanted to up grade. This all started to take time and I was flagging as only 2 weeks post op and explained I hadn't been well. Eventually told him what was the matter and that needed my car to be reliable as needed to get to hospital a couple of days later to get results of op. He looked me in the eye and said 'I've known a few people who've died of cancer and they had a look. You don't have that look so I think you are going to be ok' . Did wonder whether I should bother going to see consultant as the RAC man had given me the all clear! Fortunately I was having a good day and saw the funny side of it.

( The 'positive' one is the one that really makes me mad, what do people think I'm going to do, lie down and die! My mum died of ovarian cancer 33 yrs ago when no one discussed cancer and she didn't even know of her diagnosis. People have said perhaps if she'd known she could have been more positive and beaten it! She was the most wonderful, loving person who had everything to live for, positive my xxxx.)

By the way, perhaps the RAC man did know something, while I had a large tumour, there was no spread to lymph nodes and margins clear. See onc soon but most likely no chemo, poss RT and most prob hormone treatment so I feel grateful, must have been all those 'positive' thoughts that fought the buggers off 'so bravely'.

GMT xx

[ChoccieMuffin]

Why me?

BECAUSE IT'S NOT FAIR!!!

And the "you're so strong/brave/inspirational" gets a "no I'm not. You just haven't seen me when I'm falling apart and crying my heart out at 3am." That usually shuts 'em up!

[Guest user]

Had to smile when I read LivLassie's comment on
'he/she never complained......'
It almost makes me hysterical now (2 years on from mx) because I moaned/complained through every aspect and side effect of this hideous disease!!!
I'm not brave! I never was and I probably never will be but when I hear that comment about other stoical sufferers of any condition I just have to laugh because I was an utter wimp about everything.....
I'm sure it's completely normal!
And it's great to admit it here that I found the whole process utterly awful from dx to NED....
I feel admitting it now is part of the healing process.

Laughter and smiles to share with people coming through this BC experience and tight hugs to everyone going through the real sh*t of treatment, waiting for results and generally feeling
'Why me?'
It's not easy is it?

Take care everyone and think very dark thoughts about anyone using the P word!

Welsh girl xx

[scotianne]

Grumpy, I love the neddy comment. Will store that for later use.

[ChoccieMuffin]

Mrs F that would have been a brilliant comment. I hope even the thought of it made you smile, it certainly did me.

[grumpy]

Answer to the all clear question -

Well I'm NED now, it's called Neddy

What's that, they say.

It means No Evidence of the Damn Disease as Yet.

Silence follows, hopefully with the sound of brain cogs turning as understanding dawns....

Remember where we were before our diagnosis? Well, we have moved on but they are still there cos they haven't been compelled to learn about this beastly disease!

Flori- PWC has a point, perhaps he thought OMG she looks upset, i'll give her space and not intrude. Think - where do YOU sit in the waiting room? most of us sit in the middle one of 3 empty chairs if we can, if not we sit next to someone of same gender (usually), that we already know, or looks ready to chat. Now when we go to the Vet it's completely different, the patients trying to bite lumps out of each other and the owners apologising and attempting to socialise said animals with each other.

grumpy
xx

[Guest user]

Ive finished active treatment few weeks ago and am getting that a lot. Im happy to be getting on with my life so i kind of just smile but someone recently said to me

'so how long after diagnosis did you know you were going to be ok?'

*rolls eyes*

[Downbutnotout]

-

[Guest user]

Thanks gypsylady / ChoccieMuffin

After 20 years I've learned to take most things my s-i-l says with a pinch of salt. This week's classic on seeing me for the first time since my hair fell out was "your hair's grown" - WTF?!?

WRT the musical chairs in the GP surgery I had a similar experience on the Tube last week. I have a bit of a cough that I can't shift at the moment and the woman sitting next to me snapped her head round so fast I thought she'd broken her neck when I coughed. The second time she pulled her jacket collar up round her face and the third time she moved seats. You'd think I'd actually sneezed in her face! We both got off at the same stop and I was tempted to thank her for moving as I was worried I might catch something from her ;o)

Emma x

[livlassie]

And I thought it was just me that felt like this. If I had a pound for every well meaning daftie who told me that it is very important to keep positive......GRRRR......In my house we call it the P-word. i know it's difficult for them to know what to say and that's why I don't snap their heads off. The other one I hate is "you are so brave and strong". They are not there when i'm sobbing like a helpless and scared child at 3am. It kinda makes me feel like I am inadequate because there are all these brave and stoical folk out there who cope much better than me with this crappy cancer. I've heard so many people say that "She/He never complained" Well, can't live up to any of that i'm afraid. Regards to you all out there

[Guest user]

Ah, CM, I get that all clear question all the time too. I never know what to say so usually opt for "I hope so but who knows". Unless i'm feeling a bit grumpy and then they get an even less positive answer!

[yellow]

Hi

I do not come on here often but I was talking about this to my oh yesterday. When it comes to breast cancer there is no such thing as the 'all clear'. Yet I have come across this coment time and time again. If only there was such a thing as the 'all clear' I read somewhere that breast cancer is one of the few cancers that you can never say never. I have read recently on this forum that some lady was diagnosed in the early 1980's with early breast cancer and it resurfaced as secondary disease in 2011, almost 30 years later. Breast cancer is not only a crap disease, it is a very sneaky disease. I don't regard any of us as brave, we did not ask for this disease. Jo and Jane public can be excused for their ignorance on this subject, but some members of the medical profession should know better.

[Guest user]

Hand up to hating "all clear now?" Difficult to know what to say without sounding doom laden (often how I feel) or play along to the expected POSITIVE.

As a nurse I have to confess to being quite frankly a prat at points. Before my own chemo I would say that chemo side effects are minimal now blah blah, and then I had Tax ...... I think as nurses we sometimes talk to fill the gap and sometimes friendly silence would be better. Will try and talk less and listen more when I go back. xxx

[Guest user]

Aaaaargh, how I hate the "all clear" question.

Flori35 - I did just wonder whether the man in the waiting room realised you were a cancer patient and was perhaps concerned that he would pass on an infection to someone whose immune system might be compromised which is why he moved away from you when he had the opportunity to do so. He might have been trying to be kind and considerate, albeit in a slightly awkward way.

Love this thread, by the way.

[ChoccieMuffin]

Bob, she's actually right, in a way... the prognosis and treatment for women with a BC diagnosis IS a lot better than it was, say, 40 years ago.

But like you I do wish people wouldn't always try to be cheerful and "look on the bright side". This disease SUCKS and sometimes we'd like the professionals to acknowledge just what crap we have to go through.

Haven't had any silly comments recently (other than "so have you got the all clear then?" which I get from just about everyone who's ever found out!)

[Guest user]

Nurse giving me my zoladex injection this morning "ah but breast cancer isn't the bad thing it used to be". No, I had a great time with it, and no-one gets seriously ill or dies from it now do they? If that's what the professionals think, its no wonder that Joe public thinks that too. Though I know she was only trying to be nice. And at least she didn't make as much of a mess of my belly as she did last month, so i'm grateful for that. Al x

[Doodles123]

Thanks GIJane. Oh and apparently I have 'such nice boobs as well' what my great gran said when she was told, I can forgive her though lol x

[Ceej]

Hi Doodles

Totally agree!! the only person that really knows how vulnerable and down I am about this chemo after the 12 months I've had, is my partner, and he doesnt live with me. The only comments I get are like "you're a really strong person" - err no - that's the exterior that you HAVE to portray so that you're not a quivering wreck every day! the breast cancer nurse called me a pressure cooker, and said I would benefit from the counselling they offer. Guess what? the counsellor said my "negativity" was just realism and she thought I was a strong person and dealing with everything well. Doh!
Oh well - it really isn't easy, and we don't have to pretend all the time, but a good cry helps - I do that in private then build the wall again and on I go xx
Take care 🙂

[CanonJane]

sorry you have to join us Doodles.... it's a grotty path, but it IS do-able (especially if you're positive/brave/inspirational/have a good-shaped head/and sundry other nonsense!) Try dipping your toes into Benchland or the Dark Dark Woods if you feel the need for some laughter and reality combined! You're young to have this **y disease... I found it helped to laugh at the stupid things people say (mostly)....

BTW, I loved the concept of musical chairs in the GP waiting room! Could be a new game!

Jane

[Doodles123]

Fairly new to this and I'm sure there will be a lot more, I was only diagnosed 4 days ago and already I am annoyed at people saying 'you can do this, you're a fighter' and 'stay positive'. Urgh! I've already been called 'brave' and I haven't had anything done yet! I'm not brave at all, I am absolutely terrified of what lies ahead. I'm a fighter? No I'm not! Do you even know me at all???? I have lost 3 friends in 3 years through cancer (only one of which was BC and she died on Xmas eve and she was same age as me- 38). Damn, if only they had fought more and been more positive they would still be here! Jeez it feels good to rant!! I have laughed a lot at some of the posts on this thread, I'm still making my way through them. I feel kind of bad because most people are lovely, certainly my close family and friends. It's just maybe the ones that don't know me so well. Still, I guess they mean well. Love to all you amazing ladies x

[emmy]

Hi Flori35 do you think if you had moved your chair around in a musical chairs sort of way he would have got it? How very strange some people are and fear does make them behave in an odd way!I was asked on my way to work by a social worker who hadn't seen me for two years and had been told (small town gossip!) so she asked how I was (acceptable) I replied with the usual I am fine thank you when she hit me with her sledgehammer! Is your prognosis good? before I had chance to muster myself she continued with have you put your affairs in order? Well I am a happy go lucky sort of person as a rule and do give people the benefit of the doubt but my wicked gremlin came from nowhere and said "yes thank you but then I am in a better state than you when was the last time you had a mammo? After all I get regular checks!", Have you seen the road runner when he wheels with his legs on the spot? That's what she reminded me of and do you know she has crossed the road twice since hmmm methinks she does not want to speak to me ???? No idea why?

[Downbutnotout]

Hi Grumpy and ChoccieMuffin - it's nice to be able to share such experiences with people who understand.

[ChoccieMuffin]

Jane, Flori, and I'm sure someone else mentioned ghasted flabbers, I'm tripping over the flabbers.

O. M. G.

What else is there to say!

[grumpy]

Flori35

He's a man and they can't 'do' illness, and they certainly can't talk to anyone who looks a bit poorly. And they hate sitting next to ANY woman anywhere cos they are scared they might have to chat about something, just like women can do with each other in such social situations. They think it's safer to sit next to another bloke cos then they don't have to engage socially. They can just nod and grunt.

So no, you're not being OVER-sensitive, you have HEIGHTENED senses about how people behave, you are more acute in picking up body language etc in other people, and most of all I guess you feel a bit fragile, like we all do during this process.

Chin Up!!

grumpy
xx

[Downbutnotout]

This is about something someone did, rather than said.

I went to get my bloods done at my local GPs surgery. I sat in the nurse's waiting room which already had a number of people waiting. I sat on a chair with an empty chair either side of me. A man came in to the room and looked around, weighing up where to sit. As there weren't many options he had to sit next to me. Although there was already a space of about 2 feet between our chairs, he picked up the chair and moved it further away from me, towards the man sitting on the other side of him. Then when the man got up to go to his appointment the man next to me got up and moved chairs to be even further away from me.

I'm sure he would realise I was a cancer patient. I'm not sure what his problem was - I don't smell and I don't think I look that dreadful - but I was very tempted to tell him he couldn't catch cancer from sitting next to me. I noticed a lady sat across from us was watching the goings, she looked as though she was also wondering what his problem was.

Perhaps I'm a little over-sensitive at the moment?

[CanonJane]

Lavender - that was her closing remark as she walked away... I had already challenged what she said several times in the conversation.. BCN looked at me and said "I think we'd better sit down, come over here..." and we had a lovely chat and I vented

Libsue - just great, isn't it????? Best not oblige if you can help it eh?

Really, it's mind-blowing sometimes....

[libsue]

Before retirement I worked in a University Library, my daughter is employed in the same library. My dau was asked by a colleague 'how's your mum enjoying her retirement?', dau replied 'she was having a lovely time until she was diagnosed with breast cancer', the colleague said 'isn't it strange how many staff retire and die soon after'.

[Lavenderlassie]

Jane, that has just ghasted my flabber ( and I still have too much flabber) what a real WTF moment, what did the BCN say? What did you say? or did you express yourself otherwise!

[CanonJane]

I "bumped into" a clinical psychologist yesterday who works alongside our palliative care team... her closing remark to me was along the lines of "the good thing about getting cancer is that it makes you think of what you really want to do with life, because it's shorter" !!!!!!!!!!!!! Thank God the lovely BCN was there! Stupid woman! (not the BCN!) Jane

[ChoccieMuffin]

Emma, feel free to use seven letters in your response, three of which are F!!! 😄

[Guest user]

Emma

That's the very time that you NEED to slob around in PJs and ferret yourself away in your own nest.

Doesn't she know about the reduced WBCs and the risk from infections.

I ended up in isolation with a simple bout of oral thrush. Couldn't eat, drink, or speak. The ulcers kept moving from side to side in my mouth.

I had the nurse going one day when the AB's were put up. I asked if he could hang the bag on the other side of the hook, as the ABs were only going down one side of my body and I'd like to clear up the infection on the other side. He started to react to my request until he thought about it.

Think I was starting to improve then. LOL

Love and Hugs
June

[Guest user]

I have to confess that most of the "keep positive" and "you look well" comments don't really bother me and I'm equally guilty of trotting them out to other people too - oops!

What does stick in my throat is my well-meaning sister-in-law who keeps comparing my treatment etc. with her prolapse. Now I know that it was traumatic for her and that she needs to be careful about exercise and has to suffer the indignity of using stool-softener but IT's NOT THE SAME! I know she's trying to empathise but it just drives me crazy.

I also mentioned recently that if I feel really s**t during the first week of chemo I'm likely to just relax at home and tell people I'm not up for visitors. She said that's probably the time she needs to come round and drag me out for coffee to make me put a face on for the world?!? Now, call me self-centred if you will but I think I'm entitled to mope at home in self-pity if I want to. Her argument is that friends who've been through similar have had young children and have had to keep going. Sorry, I don't (my kids are grown-up) so why can't I slob round in my PJs if I want to?

Feel much better getting that off my chest!

Emma 🐵

[Crabbit]

Bless, my lovely, lovely mum.

Whenever I try to explain to her how sh**ty I feel due to fatigue keeps on saying 'well you are at a funny age!'. Now the thing is I'm 45 and she's been saying it for 10 years (only had cancer dx 7 months ago). Bless.

She does not know how much I bristle. I couldn't dream of telling her!

[grumpy]

I think I've worked it out ..... when folk say stupid things, I am going to reply as follows:

'One of the interesting things about having breast cancer is how even kind and intelligent people manage to say the wrong/stupid/hurtful thing' then pause for the penny to drop.

Sometimes it's just not worth engaging with them and getting even more upset.

g
xx

[grumpy]

Prince Harry??? obviously an age thing.... I've asked for Clint Eastwood for Christmas for YEARS.

I think the time has come for us all to stop holding back - we have a duty to be true to ourselves and to educate the rest of the world about breast cancer in all its forms, stages and treatment regimes.

When I had appalling PMT I decided to talk about it - in a non-judgemental, non-preachy way - to help educate other people and counteract some of the mystique and misconceptions. And it was liberating for me, and for others.

Cancer happens, and it's horrid, not us the disease.

end of sermon - sorry if i've had a rant

grumpy
xxxx to all ladies out there

[Guest user]

This comment wasnt so much annoying as - well Im sure it was pprobably well-meaning. But hrmph it left me mildly astonished and stumped for a reply:

I was in the shop buying essentials - dunno, a roll and chocolate I expect - and about to pay, and the assistant says, I like your support.

So i look round but no, alas there's no fan club behind me, (there never is, and never has been) she is looking at my sleeve.

Really?? She LIKES an aggressively new american-tan mediven NHS survived-cancer got-the-teeshirt ihateyouLE sleeve?? I mean, it wasn't even a posh Lymphodivas special that you could mistake for an elaborate tattoo or finest lace, or a souvenir of the day you got to shake hands with the Queen, or even leopoard print or psychedlic colours with glow in the dark obscenities, no it's very definitely standard NHS issue medical equiment, it is not in any way glam or admirable.
I held back from, "You must be kidding it's altogether hateful and gross just like false boobs and everything else that comes in the wake of BC (exaggerating a bit, but remember i needed my choc ration!) and settled for a very lowkey mumbled thankyou. I would have normally responded to "I like your...(blouse)" with something gracious like - It's a present from my XYZ, or I got it in HHH, it was only £2.99, or Yes my lovely friend knitted it etc. I managed a measly thankyou and focussed on paying for my items and escaping. So then with my change I get, "and Have a lovely afternoon with..." she couldn't bring herself to say as she stares at it again. Like i'm going on a picnic?? or do i have a pet snake on my wrist rather than a bit of support stocking?

Aaargh. hide in dark room, eat chocolate, be glad it's not the local corner shop that i depend on when i get the late night munchies.

Have a lovely afternoon, yeah right just me and lymphoedema. Swap it for Prince Harry any day...