Just back from a messy play group with my three-year-old son. The organiser took one look at my wig and said 'Oh Cat, how lucky you are to be able to wear such lovely wigs. I wish I could, too!' I offered to swap positions with her, she's more than welcome to the wigs and BC!
I must say my someone black sense of humour got the better of me recently. I was talking to my bank about consolodating a couple of cards to make payments easier under the current circumstances. She went through it all with me, and then launched into payment protection, how it was good, what it would help with, how I should take it up. I replied, I dont think it's relevant and it wont work for me sadly (I had already explained I was undergoing treatment for a recurrance of a previous illness) she kept on and asked why I though that, I replied 'because I have cancer and I am pretty likely to die'
I apologised to her, she laughed nervously and didn't mention payment protection again!!!
Ah well, I thought it was funny, but then I have a weird sense of humour, like telling my Mum it's ok, I have a black estate car, saves on costs of funeral cars, just slide me in the back of that. Lucky my Mum has same humour (ps, I aint planing on dieing anytime soon!)
Great post Julie.
Like Ostrich ,I was tempted to send the last bit to a few people but then realised that they don't matter and why waste energy!
I really enjoy this thread.
I was lying on the sofa today after my 2nd FEC yesterday. The postie rang the door bell and had to wait all of 3 - 5 minutes whilst I got out from under the duvet and found the front door key, I answered in my dressing gown and with my sleep cap on over my bald head and he looked at me and said "oh, someone is alive then" in a testy way. I was soooo tempted to say "yes, thankfully, still!" Jeesh!
Thanks Julie for your post. I am very tempted to send the last bit about what people can do to those people who haven't been around but then I think, what good would it do. Those that I love and those that I hardly knew that have come out in force to love me and care for me are making me feel incredibly blessed, the others - well - I don't know how good I would have been for someone with BC prior to this but I do know that I will be a better friend to someone with cancer, any kind, or life changing illness, after this.
Hi Julie. thanks so much for sharing that, really funny and made me laugh.
I just returned to work today first time since my 2nd diagnosis. Have been through the whole scary thing again, had 2 ops in last 4 weeks and the first chemo of 6. If one more person told me 'you looked tired' I was going to swing for them, really? No s*** you damned well try it and see how chipper you look pal!!
(I know they care really, but sheeesh)
Hope this post is not too long, but wanted to share it:
I Could Get Hit by a Bus Too
by Susan Frisius
“You never know when you're going to die, after all, I could get hit by a bus."
Since I've never known anyone who has been hit by a bus, I don't understand why friends and acquaintances often say this when I first tell them I have breast cancer. Do they think the possibility of their being hit by a bus equals the possibility of my dying from cancer? Besides, I could get hit by a bus too.
"You're lucky you have a treatable disease."
Don't get me wrong. I'm thankful I wasn't told, "There's nothing we can do," but losing pieces of my body, having a radiation machine set off a nuclear war in my breast and getting my veins filled with toxic chemicals doesn't exactly make me feel lucky.
"You'll be fine because you have a great attitude."
If attitude really matters, why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer is lousy. So what does that mean?
"Don't worry, if your time's not up, it's not up."
If that's true, why did I bother with the surgery? Should I cancel the rest of my treatments? Do doctors perform surgery and give chemo and radiation for no good reason? After all, "if my time's up," treatments won't help.
"I've read that anger and stress lead to cancer."
Great! Now I caused my own cancer.
"You should simplify your life."
It's pretty simple now, all I seem to do is go to medical appointments.
"I've read that people can keep cancer from coming back by changing their diet. Maybe you should try to improve yours since it didn't keep you from getting cancer. That's why I watch everything I eat."
The person who tells me this knows I only eat natural foods, cook everything from scratch, don't eat junk foods and rarely eat meat. "You eat white pasta," she says when she sees my puzzled look. Of course, she eats white pasta too, but calls the flour "semolina." Does she really think if I had eaten pasta with "semolina" on the label I wouldn't now have cancer?
One person says, "If you really want to live, you will. Just never give up. When people give up, they die."
If I were hit and killed by a bus would she think I died because I gave up?
Another person tells me to visualize the cancer shrinking. She says, "If you really work at it, you can eliminate it."
Most conversations end with "call if you need anything." I don't have the energy to call anyone - I can hardly feed myself and get to my medical appointments.
Why do intelligent and sensitive people who care about me say such things? Can they really believe I'm responsible both for my cancer and the outcome of my treatments?
I think these people want to believe cancers are caused by a person's poor emotional state or diet. This lets them think they won't get cancer because they think they eat properly and handle their lives and emotions well. Unfortunately, it also makes them feel uncomfortable around me because they're afraid they'll find out their attitudes and diets are no better than mine. So I hear, "How can you be so cheerful?" and "All that yogurt can't be good for you," and "Put your daughters in foster care, they're too stressful for you."
I have no doubt that everyone I talked to about my cancer was concerned about me and wanted to help me keep a positive outlook. I'm sure they were sincere when they said, "I'd like to have you over for dinner sometime, but I know everything makes you sick," or "It's good to see you out grocery shopping, I was worried because I hadn't seen you for a while."
I'm sure friends would have been happy to help if I had called them and asked for assistance. Most likely they thought they were being considerate when they didn't visit or call "so I could rest." I think they just didn't know what to do or say.
So what would help me while I'm being treated for cancer?
Drop in or call. The only way you'll know what I need is if you keep in touch. Remember, if I'm out in the community, I'm well enough to be out. It's when you don't see me that I need your support.
Don't wait for me or my immediate family to ask you for help. It takes too much energy and I don't like admitting I can no longer cope with everyday living. When you want to help, don't ask what I need, just do it. Bring me a meal (white pasta is fine), wash my floors while I sleep, take my children to a movie, get the oil changed in my car, pick up a few vegetables for me at a farm stand, change a burned out light bulb, take my empty yogurt container off the coffee table and throw it out.
Don't minimize the illness that scrambles my life by telling me about simple causes and self cures. Everything I've held important has been touched by it - my ability to raise my children, my work, my independence, my social life.
Don't let your fear of hearing about cancer keep you away. While cancer has become a big part of my life, it's not my whole existence and I am able to converse on other subjects.
Remember my immediate family. My cancer affects them emotionally as much as it does me. My kids and parents need their friends' support now more than they ever did.
If I let you know your company is too much for me at the time, come back. If I don't answer the phone, call again. I need to know I can count on you because I'm temporarily unable to count on myself.
If you're feeling helpless because someone you know has cancer, don't. Take them a meal and eat it with them. Talk to them as you wash their dishes. Play a game with their kids so they can hear laughter. Pet their cat until it purrs. Bring over a book and read it to them. Both of you will feel better when you take action.
Well said Susan!
I have been reading these posts for a while now,and have plucked up the courage to join in!! I am awaiting a double mastectomy due to re-current dcis and lcis,and for me,this is the way forward.I thought I would be pro-active and see if there is any help available in the form of a temporary travel pass for afterwards when I am feeling up to going out but am not able to drive.The man in our local council was extremely helpful--NOT--after he asked if I was partially sighted,hard of hearing,or walked with a stick,all of which I answered no to,he asked what Was wrong with me then? I gave him the abridged version as he was a complete stranger,just I was having surgery for cancer.His reply-'well,its not as if its permanent,is it!!!
I have just came off the phone from my auntie who was asking how i was and what was going on!! mum had told her that i was having tests tosee if i had BC. Was sitting reading this while she was on phone. She told me of 5 people who had BC and one lived til she was 95 tho had a mastectomy when she was 56. My sister died 17 years ago of BC and i had to relive that with her, then she said that things have changed over the years and i MUST stay positive!! Her son is getting married on Saturday and she says that we will not really be in the wedding mood will we. Beleive me i said that i was looking froward to it as i love a good wedding, however ALL my aunties are going to be there and i will be questioned all day from them, I know that they mean well but oh dear now i am not lookin forward to the wedding. They will be watching my every move and reminising about my sister. My poor mam n dad will get it too. My core biopsy is tomorrow and now i will also be asked about how it went. OH happy days!!
I got told my a Nurse friend last night that I look really well..... Hmmmm My hair was a mess, I had no make up on and I looked like Crap..... I am starting to get a complex for the times when I think I look reasonably ok!!!!
If anyone tells me I should be taking it easier and not work so hard and then stand by and let me load up the car, do a pile of ironing, cook tea for 5 and hold down a full time job I will kill them.
My worst has got to be from someone who texted me when she'd heard and said "..some gossip about me - I had my t*ts done a few years ago"!!!! And she wasn't referring to preventative surgery!
oh this post really is keeping me going!!! we should do a book - if netmums can do one why not us - it would be a best seller and would bring some money for the charity - what do you say powers that be?? I know lost the plot!!! men in white coats are on the way!!
I was on a girlies night out just about 3 weeks after my last chemo. I had a slight coverage of hair as it had started to grow back when I was on Taxotere.
I saw an old chappie (known him 30 years) and he came up to me, rubbed the stubble on my head and said"What's this? -charity?" I said - "No - it's cancer" to that he said "You've put some bloody weight on haven't you?" I cannot type my response but he certainly knew how I felt. My friend said it was a good job he was in his 60's or else she would have slapped him!
I can laugh about it now
Just stumbled across this thread by accident and it's really cheered me up. I'm so fed up of being told how brave I am, how amazingly well I cope, how lucky I am to have great bone structure to show off my bald head, and so on.
Some of the worst things said to me since my diagnosis in July:
"Just think about all the amazing things you've done and places you've been to before you died." - thanks, not dead yet.
The day after mastectomy, I'm crying my eyes out in hospital, a friend texts and asks how I am, so I tell her. Her response, "Well, if you don't like it and it upsets you, just don't look at it, then." She is so off my Christmas card list.
Mother-in-law: "All the adversity in your life has prepared you to be brave and cope with this." My response: what has prepared me to cope with the removal of a boob and baldness is the fact that my gorgeous eldest brother decided to tell us all last year that he likes to dress as a woman, so now we can go out together wearing falsies and wigs together. That silenced her.
On a more positive note, one of my friend's 10-year-old daughter is so in love with my shaved head that she wants to shave her hair off to raise money for breast cancer awareness. She keeps telling her mum that she loves how I look and wants to look just like me (hopefully only being a baldie for sponsorship money, bless her).
oh my hubby can't do that either!!! so glad its short enough for me to do my hair!!
took my daughter back to school today and found that everyone was giving me the sickly sweet smile - they really don't know what to say!!!
the best comment today - "if your going to get cancer, breast is the best you can get" - so ladies we have a quality cancer here - not a no frills kind - high class!! what stoped me from laughing at this I don't know!!!
My latest comment was from my cousin... "I must say you sound very positive - either that or you are trying to act brave - I hope you are genuinely positive"
Would it help if I acted as a blithering wreck, would people then tell me to be poistive and brave!!!
My neighbour saw me at the chemist yesterday and said "Its nice to see you out an about and you look so well" Actually my legs are fine and I can walk, and my boyfriend has to straighten my hair as I'm still sore from the op - being a mechanic he aint no hairdresser, and actually I look like crap as a result.... Bless him!
its so daft - my friend keep checking I am still positive - like its a jab I've had and they are worried it will wear off!!!!
My daughter is the best saying that if I lose my hair she thinks I will look like an alien and I should get a wig like Dolly parton - only because she is on Hannah Montana show - My daughters only 8!!!
Its really strange that before I had BC I knew no one with it - except for my nanna - now everyone I tell knows someone.
LOL Mandy, well I looked fat before so maybe they mean "even fatter"? Actually maybe people expect a fatty to be thinner (ie look nicer) and are relieved that I am still fatter than them lol.
In my exerience when ppl say you look well, it means I look fat!!! LOL... sorry totally irrelevant But had to mention it as something else you shouldn't say!!
Just on the topic of people saying you look well during treatment and then saying afterwards well actually you look better now...my friend who is always v honest said that during chemo/radio etc I never looked ill but I just didn't look like myself and she could tell a real difference a couple of months after treatment when I went back to "myself".
Many of these misconceptions are the fault of the media, who portray even early, primary cancers as immediately halving your body weight and making you as white as a sheet
LOL.... Its like when you are diagnosed you should be ill... people can't understand why you are not sick and you can function like a "normal" person.... drink wine and socialise.... it makes me laugh!! My mother in law an hour after I left the doctor from being diagnosed said you must make a claim on critical illness, why can't they operate tonight, I think its bad they are making you wait a few weeks for an op.... bla bla bla..... On reading some of your threads clearly there are more important people than me needing to be seen faster.... even doctors have a priority list! It does make me mad!!! She gave me a list of things to sort out like I wasn't gonna make it.... Give me a chance for it to sink in for gods sake... all I wanted was treatment nothing else mattered!
well this thread has cheered me up - I know its not just me.
I have had loads of "chin up" - when did it fall down??? My hubby is treating me like a child and its driving me mad. people organising my life like I am now so ill/disabled that I can't function or make decisions. I have only just had my DX and the lump removed last week. No idea when rads or chemo but plans are already in place for when I am in a blubbering mess and need looking after. I know they mean well but having cancer does not make me lose control, I can make decisions.
I keep getting the "you are brave" - we have just got over my son having surgeries due to kidney and bladder problems and got told that i developed my bravery there and it will carry my through - what a c**p parent would I be leaving my baby to go through that. And its not like I can leave the cancer and get on with it!!!
My mother is a classic - while waiting for the result I had a conversation with her and she became the expert - knowing at least 100 people who had lumps but they were nothing and I should not worry, so when it turned out to BC she told me off for not going to the GP quick enough - can't win!!!
I really want to get back to work ASAP - for my own sanity!!!!
I appreciate that people do not know what to say, while others want to talk about it all the time... in a bid to try and get the message across to people I have changed my status on facebook to save me saying the same thing over and over - things like - Back home - op went well.... those that know my situ should know what that means - yet ppl still ask how it went - I think ppl just like to ask to appear concerned - which I have no doubt they are, but there is so many times you can say the same thing over.
The worst thing said to me tho was my dad... the day I was diagnosed - clearly upset, he said "that Jade Goodey got given 50/50 chance - have they given you any odds?" Luckily I know my dad and thats what he is like - think the worse and it can only get better.... hence why I didn't tell him about my lump until I knew what it was as he would have looked on the net and stressed me out more than I was already!
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.
Take care all
Not so much "what not to say", but...
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
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!
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.
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!)
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.
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.
One of my personal favorites has to be "well you never were very good at doing your hair anyway" ....true but ton really the point!
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 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.
It's crap isn't it.
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
And for those of us contemplating or actually going for reconstructive surgery there's
'Why bother - you really can't tell!'
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
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.
I think your spot on Vertangie, there is a big difference between being patronising and thoughtless to being supportive and encouraging.
Love Jules xxx
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. 🙂
So many familiar comments, I have a few new ones:
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!!
ok, I have some good comments:
-it's good to loose hairs, at least you don't have to shave your legs! (after I started my third year of chemo)
-do you think you are the only one who has problems? I have problems too, I just don't make it public like you do (from a colleague (I worked all the time when I could), she was trying to pick up a fight and I asked her to stop it because it was not a good day)
-you are just pretending your arm is painful, it is just an excuse not to wash the dishes (my sister, four days after surgery)
-you are used to this kind of things (both my parents died before I was 37), nobody in my family died so far, so for me it would be a bigger shock to get cancer than for you! (a french ex colleague of mine)
more classical ones
-you are my heroe!
-you are always so pessimistic
-you have to think positive
-you have to make yourself beautiful, you should always wear a wig (here we have 35 degrees for at least two months in summer
-you should wear your wig on the beach!! (???)
and many more....
Cava all I can say is you rise above it like the beautiful woman you obviously are. I have a few friends who've behaved like that.. I'm afraid to say they're more pen pals now, by my choice.
When I was having chemo, being bald and overweight and depressed, my sister told me that she would not come and see me at all, because she did not want me to feel jealous of the way she looks or her wonderful new job.
(She is very slim and goodlooking with lovely blond curly hair, very successfull, always our (late) father's pet and quite a few years younger than me)
Me jealous? yes definitely! Of course I am!
She lives a 45 min drive away and I did not see her for for more than a year. (It still hurts when I write this.)
In a few weeks she is having an op in her knee which will immobilise her for a few weeks. Maybe I shouldn't see her so she won't be jealuos of the way I walk?
Well: Two wrongs do not make one right........
When mum was dx with bc, I found I was being so careful not to say the wrong thing. One of my friends has a friend (I don't know her) but she was not doing too well and had not got long to live. Mum asked how my friend was and I said "well she is not good, as her friend who has cancer doesn't have long to live" omg I realised straight away, but made it worse by saying "it's ok its the serious kind" (yes I know it's all serious, but it was one of those situations where you try and dig yourself out and make it worse)!. I rang back later and said mum, I am sorry that came out wrong. She laughed and said don't be daft, you were being honest. I know you didn't mean any harm. I felt terrible I can tell you!!!!!!!
Bumping this up again and to tell you what happened today
I am just trying to get back to work after treatment has ended. The Tamoxifen is making walking very painful. The lady I catch the bus with said " Whenever I feel depressed about my life, I always think of YOU" Thanks!!!!!!!!!