I’m new here. nearly at a year since DX, (i’m trying to pick up the abbreviations by the way). just turned 41, I had mx with recon, followed by emergency surgery, then lymph nodes out, then infection, then rad, now tamoxifen (which i’ve taken a break from…another thread possibly).
i’m not sure how or if i have kept sane through this physically and mentally exhausting year.
one thing i did tho was kept a sort of journal. i used very dark humour to keep me going at points. very quickly it got filled up with snippets of things people said to me, that were the most stupid, ridiculous, or annoying (i know, sometimes it wouldn’t have mattered what people said they just annoyed me anyway…) or just the weirdly odd things that happened. like…
the district nurse who came to empty my drain after 3rd surgery, who said to me whilst i was lying on the bed, obviously having recently had mx, with a lovely tube coming out of my armpit “so are you taking some time out for yourself then ?”
really, you couldn’t make it up.
hope it’s not just me who seemed to get so many of these stupid comments i nearly filled a book !!!
much love to all on here who are writing so honestly
I smiled when I saw this thread. I was only diagnosed last monday and already I’ve noticed the annoying things that people say to me. Well, maybe they aren’t that annoying to others, but we are all different and deal with things in different ways. Until you go through this, you can’t possibly understand what it’s like.
So the one that has irritated me to date is when someone wrote to me and said ‘positive mental attitude is the way forward’! I know they mean well and that they are probably correct and that’s how I should deal with this, but at the time I wanted to punch them in the face!!! And I’m not a violent person!!!
And ‘light at the end of the tunnel’. Where can I ask is that? I don’t see that yet as I am waiting for results to come through and all I see is this endless process that I have to go through, and I don’t even know what it’s going to be, apart from horrible and painful.
As you can see, it’s still early days for me and I’m still getting used to the whole idea of having breast cancer. But I think I may write a diary too, someone suggested that to me yesterday. I think it may help and it may be good for other people going through this further down the line.
I was diagnosed 10March this year, MX 23 April and now having 3rd FEC of 8 next Thursday, the Rads then Herceptin for 12 months ,so, long way to go yet for me, but am getting on with my life in between.
I have always had a lot of respect for Jenni Murray, the journalist and when I was diagnosed I found a piece she had written when she had BC. she titled it “positive thinking makes me sick”. the piece was in the Daily Mail I think. I know having a positive attitude helps, it does for me anyway but nobody can force that on you. You cope i whichever way you can.
Katie, you will feel better when you have a treatment plan. You will find lots of support on here and lots of laughs too.
well done for getting on here. yes you are right, everyone deals with it differently, and although others are often only trying to be helpful, they can sometimes get it SO wrong ! (like my sister in law who on the morning of my mx & recon said “I’ve always really wanted a boob job”) that is why coming on here is so worthwhile (i am kicking myself, only did it last week ! Duh !).
hopefully on here you will find lots of strength, information and above all people who really understand the whole myriad of emotions that come along with BC, to help you make sense of it all. sending big hugs your way xx
when i was first diagnosed i banned any of my friends from using the ‘cancer face’ (frown, head tilt, sympathy face), and also from using the ‘I’ word (‘Inspirational’)… i laughed very hard when someone who didn’t know me that well txted to say i was…yup, Inspirational !
I know totally what you mean about the head tilt, frown thing - it’s really annoying isn’t it!
I feel like I have joined a new exclusive club - no one knows what it is like and although I know they are trying to help and be supportive, comments like ‘be strong’ and ‘be positive’ really irritate me. I suppose we will get used to it, and learn to let it wash over. Some people don’t know how to deal with this kind of news - like my husbands immediate boss who asked him if he would be in work the day after I was diagnosed?! He managed to say no he wouldn’t be without completely losing it. I understand that people don’t deal with things like this very well - I can forgive them for that.
As for your sister in law - she falls into this category too. They just don’t know what to say and so they say the wrong things.
I guess I will be seeing you on here a lot, like myself. Wierd isn’t it?
hi all agree with all your comments. yeh people say such daft things don’t they-as for the comments about positive thoughts-i agree, we all have our own way of dealing with this crap!,but i really don’t need to be told how to deal with it. its almost like being told if your not positive and don’t believe you won’t get the cure!! i read a great article by an american writer barbara echenriech who had breast cancer which really blows the people (who call us survivors like war veterans etc out of the water. it was in the guardian-called smile you’ve got cancer. she even describes the pink ribbon as the soppy pink ribbon. its not easy living with a death sentence over your head and this disease blows your life out of the water. oh and i hate what i call the ‘unwanted cancer hug’ from people who don’t know me eg. health professionals who probably give it as they don’t know how to deal with their own emotions, don’t know what to say. i told my oncologist if my hair comes back straight i would give him the ‘unwanted cancer hug’ hee hee !! i had very curly hair before.
Whilst I agree that many people come out with stupid comments, I think we have to remember that unless you have been in our shoes it is difficult to know or understand how we feel,or how we deal with it. Before I had BC I didn’t really understand much about it and I too might have said the ‘wrong thing’ to someone. I much prefer that friends try and find some words to say,rather than just stay away - that hurts much more.
I am now 3 years post dx,and when a neighbour was recently dx I too heard myself saying that ‘there is a light at the end of the tunnel’,because in many cases there is. I have to believe that my cancer is gone and live my life to the full,not dreading every day in case it comes back.
Yes people often say the wrong thing, but probably because they are lost for the right words to say.
I’ve been living with breast cancer for seven years and when I was first diagnosed I quickly learnt to close down conversations from some who felt it was suddenly ok to ask me all sorts of intrusive questions at a time when I was still reeling from the shock of diagnosis. (clicking on my profile explains more) I did try to do this kindly though.
The late poet Julia Darling wrote the following verse when she was living with breast cancer secondaries. After reading the posts here I was reminded of it.
How To Behave With The Ill.
Approach us assertively, try not to
cringe or sidle, it makes us fearful.
Rather walk straight up and smile.
Do not touch us unless invited,
particularly don’t squeeze upper arms,
or try to hold our hands. Keep your head erect.
Don’t bend down, or lower your voice.
Speak evenly. Don’t say
‘How are you?’ in an underlined voice.
Don’t say, I heard that you were very ill.
This makes the poorly paranoid.
Be direct, say ‘How’s your cancer?’
Try not to say how well we look.
compared to when you met in Safeway’s.
Please don’t cry, or get emotional,
and say how dreadful it all is.
Also (and this is hard I know)
try not to ignore the ill, or to scurry
past, muttering about a bus, the bank.
Remember that this day might be your last
and that it is a miracle that any of us
stands up, breathes, behaves at all.
While I really agree with these posts (I don’t have BC but I have a chronic illness, my mum has BC) I also agree with those who say that people don’t really know what to say. It doesn’t mean their comments aren’t irritating or whatever, but sometimes it’s worth remembering that many people struggle with any sort of long term illness and telling us to keep positive or make time for ourselves or whatever, speaks of the awkwardness they feel when confronted with it. I have a disabled child and the amount of times even close friends have said things that I honestly feel they ‘should’ already know is not applicable to my son! But I think many people struggle to look outside the norm and only have limited ways of reacting to other people’s difficulties, particularly when it impacts on their own fears. I think Western society is ill-equipped to deal with disability although fingers crossed things have moved on somewhat.
I do so agree with over the rainbow and Karen: it is pointless to get uptight about people saying 'inappropriate ’ things to us or feel that others are being tactless/ unkind/thoughtless etc etc.
‘Into each life some rain must fall’… and so many people have to contend with bad news and distressing illnesses/ disabilities etc - how can we expect others always to say the right thing for YOU - which would quite probably not be the right thing for ME? ! (eg for me it really didn’t seem SO inappropriate that someone’s boss should ask if he would be in work the day after his wife’s diagnosis)
People who at least try to communicate with us are a whole let better than those who cross the road to avoid us - and if they say pratty things sometimes mostly they are just trying to say ‘something’ to show that they are concerned.
Although it’s horrible, our own breast cancer is not always the worst thing in the world that can happen to us: in my case, the grief of my daughter coping with a late termination for foetal abnormality closely followed by her being diagnosed (at 32) with BC was a whole lot worse than facing my own diagnosis of aggressive breast cancer. Sometimes we just need to get things into perspective.
Very interesting comments. It’s easy to be critical when others are trying to be well-meaning. Did I come out with these types of platitudes before my illness? Probably. This is second time round for me - I have secondary breast cancer - and this time I’ve felt quite a lot of avoidance from people being to scared to voice their feelings. I open up discussions with friends saying that I won’t necessarily proffer information but I WILL answer any questions they have. This seems to work - for me. I’ve listened to some pretty insensitive comments but I have to believe that the people who said them didn’t know they were causing offence. First time round I had a boss who said deliberately nasty things - but that just summed her whole attitude up! I like the poem Belinda - I’ve posted it on my Facebook page today. Food for thought, indeed. I, personally, don’t mind if people say “You don’t look ill.” “You look well.” “You look better than last time.” “We must keep positive.” etc., etc. I believe they are well meaning and having had two bouts of this illness don’t mind at all if people comment on how well I look. I think I was more sensitve first time round for some reason.
x
Hi Tawny and all, yes I like being told I look well too. A few years ago, I had secondaries at the time, a friend was dying of breast cancer and I too, regretfully, resorted to platitudes. Albeit with the best of intentions as my friend had, until then, always wanted to try everything to stay alive as she had young children.
x
oops. it seems my first forays into this forum have missed a beat with most of you.
i ofcourse understand that people often say something because they care/want to let you know, and this can often be hard for them, and you, and it sometimes goes wrong.
the stupid comments i seem to have got alot of were infact mostly from health care professionals, such as the district nurse, and on the whole i found them somehow absurdly funny, although occasionally it was obvious that for them this situation was a day job, and they had lost sight that for their patient, this was traumatic.
kate, i am sure you will find lots of comments on here that ring a bell… i hope it helps a little. i hope you get some answers soon. I’ll look out for your posts xx
Hi Erika,
You didn’t get it wrong at all… I just wanted to defend those who think they are helping because at least I knew they cared,as apposed to the so called friends who didn’t call,write,phone.
I had a lot of inappapropriate and funny comments come my way,fortunately (or unfortunately!) I was too ill too care at the time. Not least my son, who told me I needed to shave my head because apperently I looked like the ‘Nutty Professor’. Luckily I understand his sense of humour !!
Between us we could probably right a book on the things people have said to us
Same here, I don’t mean to be dismissive of all the support that I am receiving. I love all my friends and family for everything that they are doing at the moment and I can forgive the annoying comments.
I think maybe I made annoying comments in the past too, that’s what I find funny about it. Unless you have been here in this situation you don’t know what it’s like do you? Already in the space of a week, (and it is exactly a week that I have known)my life has changed dramatically, my priorities have changed and the things that are important to me are my husband, family and friends. Nothing else matters, oh, apart from getting rid of this thing inside of me!
I like this thread here though Erika, it made me laugh, along with the thread ‘whether to laugh or cry’! I was never very good at posting on forums because I was scared of saying the wrong thing - I don’t care anymore - everyone needs to say what’s on their mind and it’s natural that not everyone will agree with everyone else’s posts.
I have read this with interest now I am 5 years on and doing OK, I think everyone is concerned and has best intentions (and you probably know the ones who don’t!!) -
just a couple of additions… I was at a family do yesterday and a (very dear) cousin came and sat beside me - her head tilted, she held my upper arm and said (in that voice so well described) how ARE you? it was funny yesterday and readng this thread has brought a smile to my face today as well - but I also have a good one from my boss at the time - on the day of dx, I went back to work and told him (he knew where I was going and why)
“well, I shan’t tell my wife, she’ll get upset…her mother died of it!!!” Lovely!! Actually, he was a very sweet man, but from a different planet to the rest of us LOL
There was another lengthy thread on the same subject that started before I joined with some howlers that people say, but I can’t find it now. If I find it, I’ll post the link.