What are the right and wrong things to say?

I run another charity and I was diagnosed with Breast Cancer last week. As my charity has quite a large readership (370,000 facebook followers, 98% of whom are women) I have decided to blog my journey to help others who may either be going through it or know someone who is. My next blog post is about things people have said that I’ve found helpful and things that havent been quite so helpful. Personally I dont like people saying I will get through this and I will be fine as no one knows that. People said it when I went into hopsital when I was pregnant and my son passed away so I have a particular bug bear with that phrase! I would however like to get a wider perspective than just mine so if anyone is willing to share things theyve found helpful or unhelpful I’d really aprreciate it! I wont use names unless you specifically say so, so it can all be anonymous. 

 

My view is also that i would rather people said something wrong than nothing at all but would be interested to know if people feel the same? or do you prefer people to keep quiet if they dont know what to say? 

Hi,I had to smile when I read this post. While I now realise that it is very difficult to know what to say to someone who tells you they are having treatment for cancer,I think perhaps less is more in this case.Maybe a hug is good,I just don’t know.

I have been told on at least three occasions about all the people who that person knows who have died of breast cancer.

I was also on the receiving end of “but you used to have such pretty hair”

"Onwards and upwards"didn’t go down well when a complete stranger to me (adjacent allotment holder who had heard the news) felt she had to come up to me and say something.

"What are you wearing that hat for?“was one comment at a dance class.When I informed her that I was having chemo,the reply was"thought so” and she walked off!

A hug and a ‘I am here if you want to talk as I have been in the same position’ was good.

I would rather people say absolutely nothing about it and just talk normally about whatever that person would usually chat about.

You also get the tilted head with “how are you?” After replying telling them that I am fine thank you then comes “how are you really?”

Luckily I have a really supportive husband and family so we have had a bit of a laugh about these things but 

some people would struggle to hear these comments.

I am really interested to hear other people’s experiences.

 

 

There are no right or wrong things to say. No one else knows how you feel so how can they know what is the right or wrong thing to say. Having been diagnosed in January and awaiting a mastectomy, I don’t even know how I think I should be feeling, but at the moment my emotions are chaotic. All a partner or husband or family member can do is just be there for you, where ever your mood or feelings take you. To not ever be cross or intolerant, but just be there. This is only based on my own circumstances and is not a presendant for any one else’s.

Personally of late the following words get on my wick

Positive
Fight
Journey

I know they are words used by people who have no idea what to say but they irritate me.because

If im not positive will I die? People say oh youll get through it you are so positive, or just stay positive. It also puts undue pressure on people to not say how they are really feeling as people expect them to be positive.

Fight - again implies if I die I didnt fight hard enough, ive done chemo , im having my boob chopped off and im being zapped at least 15 times ive done everything I could do if .im not fighting cancer im living with it. You can retreat and run away from a fight.

Journey - if im going on a journey there needs to be a bar and a nice expensive hotel at the end.

Another thing is god/life wouldnt give you this if they/it didnt think you could handle it. Guess what we have no choice but to handle it now jog on with your mindless comments

Theres a card that says- when life gives you lemons I wont tell you a story about my cousins friend that died of lemons.

Theres another card that says let me be the first person to punch in the face the person who tells you things happen for a reason

The person who would send you those cards are the kind of people you want and need in your corner. They treat you like normal the ask how you are and if you say sh*t they give you a hug ask if you want to talk about it and dont mind if you say no.

Id rather someone who didnt know what to say just say i dont know what to say. Ive had friends run for the hills I now have a previous acquaintance who is quickly becoming my best mate they said this when they found out.

I dont know what to say Jen apart from its sh*t and if you want me im here.

Another thing is people should offer actual things rather than if they can help. People say if you need anything let me know, you already feel guilty you have just tailspun everyones worlds by telling them you have cancer you dont then want to start asking them for things. Whereas if they say do you have anyone to drive you on Tuesdays to chemo I can its easier to say yes. Im cooking a casserole etc on Tuesday I will cook double for your freezer OK.

Positive things have been

When your hair grows back im paying for your first haircut then we are doing lunch

I know water tastes like poo at the moment I bought half the squash aisle for you ( passes 2 bags full of squash) I can take to work any you dont like.

My boss said “chin up” in the most patronising tone ever!
For exactly the reasons sited by Jen I hate the words positive, fight and journey.
Also ‘strong’ although maybe that’s a good one cos I’m using lots of strength not to tell you to get lost.
For me, and I know this is hugely personal so please don’t judge me, it’s I’m praying for you. No you’re not, cos you know I have no religion. You’require saying it because you want me to know you’re thinking of me. So just say that. If I don’t make it is it cos you didn’t pray hard enough
If I do make it is it because you did pray or because I had a brilliant medical team and I happened to be at the right stage in my illness to respond to everything. If it makes you feel better pray for me but don’t think it will make me feel better

I like the “are you up for visitors I’ll bring lunch”
Or life’s rubbish I don’t know what to say followed by a hug.

Jen Jen I need to find those cards! They sound great! I have a problem with the word positive too

Great thread !!Be positive ,stay strong ,you are a strong person ,all ******!!!Said this on another thread but "what can I do to help " is the best thing I can think of to say .

Possibly the worst comment I have had was from an acquaintance of my husband I met on my first social event after my surgery. He said " welcome to the C club" , his wife has bc. It was the condescending way he said it as if I was looking for attention and chose to have bc. I went outside for a cry so my husband wouldn’t know. I did tell him days later. He was not impressed at the insensitivity and told said man so. A family member told me that I look like a refugee when I was wearing a head scarf, I have lost all my hair. Perhaps both comments are not really that bad but in the context they were spoken I found them very upsetting.
I have had and continue to have lots of support. Like most I hate the fight, battle, journey type comments I always want to say its not as if I have a choice.
I will be following this thread to see what people are saying.
Jan

You are lucky… I can’t stand!! Lucky it’s caught early, lucky it’s not speak, lucky it’s treatable. Maybe I am and I’m being unreasonable but I don’t feel bloody lucky! Sarah X 

Just had a laugh at this thread . It is so true. All I have heard is stay positive, your strong, your a fighter. I also got chin up. What exactly does that mean? X

When I got recalled after my mammogram several friends said ‘you’ll be fine’ then when I had the biopsy the same ones said ‘it’ll be nothing’ I know it was difficult for them to say anything negative but I wanted to scream at them ‘how do you know’ then I was diagnosed with bc & then it was ‘stay positive, you’ll be fine.’ I know they are only trying to help but then that doesn’t allow me to say how I feel when sometimes my feelings are negative.

I’ve had some people say that I’m an inspiration, that gets my back up, and also being told how strong I am. How I see it is that I’m not being strong, I’m just waking up each day and getting on with it as what else can you do? The hair comments as well, yes ‘it’s only hair’ as a few people have said and ‘it’ll soon grow back’ however I feel like saying to them that I’m sure they’d feel different if it happened to them. Some people just don’t think, so just either look embarrassed or say the first thing that comes out their mouth xx

I have to say the worse thing is, you will be fine!!! I want to say oh right you a physcic, or do you have some medical knowledge? You don’t I will be ok, so font say it, I prefer I hope you will be ok? Because that’s all we have is hope. But I do understand it must be hard for people to know what to say, and in my previous life(before b.c) I was prob guilty of this, so now I know what empathy really is.

I know that there are lots of cliches that people use, platitudes etc but it is hard to know what to say. I want to be around positive vibes not people who are doom and gloom or keep referring to BC as if it’s a death sentence. I can drag my mood down by myself without anyone else’s help!! I have BC friends who ARE still here and so I want to be one of those too. So when I hear people say ‘you will get there’ I will and I want to. It’s not about denial it’s about wanting to get through this and to get back to my life. If people want to pray for me, we’ll why not?? That’s what they want to do as long as they don’t bring a prayer circle to my home LOL!! I hate people sobbing when we talk about it or being ‘resigned’ to a ‘cancer sentence’. Sometimes the words ‘strong’ or ‘inspiration’ are awful and they imply we had a choice which is laughable but I tell them to come to chemo day and they’ll realise that all who have to go through any serious situation have to take their medicine. What about if any of them had a heart attack?? People die of those too you know!!!

Great thread! I would like to contribute…….

 

What I disliked, in no particular order

  • On telling a friend I had to have a mastectomy – ‘one breast or two?’
  • ‘It’s only a breast, stop dithering about’ (when I was unsure about consenting to a mastectomy)
  • ‘You will kick this thing’s ass’
  • Being told I was lucky. Lucky! I don’t think so.
  • Free boob job. Really?
  • A really good friend recently complained about her boobs getting saggy. She said to me – at least you’re getting a free boob lift. I should have bitten my tongue but I said - at least you’ve got two boobs you can feel, two nipples, all your lymph nodes, no nerve pain, no scars………… We both apologised!
  • You will be fine, it will be nothing (said to me by one friend at every single stage of my diagnosis).

Prior to surgery, I wanted visitors who were happy for me just to talk things through with them, without judging me or my crazy, unstructured thoughts!

 

After surgery, it was great to have visitors to call round for a coffee, or to help around the house, with silly things like hanging out washing, hoovering etc. I was quite astounded one day to discover that I couldn’t even mash potatoes! It was also great to have a friend who would drive me to appointments.

 

On returning back to work after 6 months absence – the nicest reactions were the hugs, or the ‘lovely to see you back, how are you?’ type of comments. What I found hard to come to terms with were some people who have never mentioned my illness, absence or my return, presumably because they don’t know what to say.

 

 

I’ve just put a new profile pic of myself on Facebook. Apparently I make chemo look ‘easy’. That comment has annoyed me xx

It’s a mine field for people really isn’t it cos if they said Sissy you look like c*** you wouldnt exactly feel good either would you!!

Love this thread! My single worst comment came from some utter cow & was “have you had it chopped off yet?” FFS is that all you could come up with!?

I hate 'it’s only hair" & “it will grow back quickly” (NO IT WON’T!, it will take two years to get back to what it was before) & “small price to pay” (no actually, it’s not a trivial thing, apart from the trauma of diagnosis, hair loss was the worst bit).  

My best friend must have said “you’ll be fine” about 50 times.  It made me feel as if I was making a fuss about nothing & had a head cold or something. I did pick her up on it gently, only because she went on & on & on & on in every single conversation we had about her blo*dy yoga teacher who had it & is absolutely fine 3 years later.  When she came to chemo induction with me, she was still banging on about Mrs Flipping Yoga and the chemo sister picked her up on it, saying BC is actually 18 different diseases & your outcome totally depends on which variety you have & how badly you get it. I thought “that told you love”, but the very next time we met Mrs Yoga came for lunch too. Now I’ve got all that out of my system, Scarab you talking about returning to work after an absence reminded me of when I saw a bloke in the lift at a company I left & then went back to work at again 10 years later.  The bloke said “oh hello Lisa have you been on maternity leave?”. Errrr not unless I was having a 10 year old elephant Alan.  Really made me laugh.  Missy please tell us the name of your blog so we can read.  Love to all xx

Oooh,we should a “top ten” crass comments !!!Have you had it chopped off yet is definitely a contender !!!

Fortunately I haven’t had anything said to me that I’ve taken great exception to and I have to admit to using the word ‘journey’ on here in more than one occasion (sorry to anyone I offended!) I also think some of the things people say are well meant, although ‘have you had it chopped off yet’ - I just can’t imagine how anyone could think that was acceptable!!!
My brother died from a brain tumour 24 years ago when he was 31, and since then I have had difficulty accepting the phrase ‘fought hard and beat cancer’ To me it suggested my brother had not fought hard so didn’t beat cancer. I felt very strongly at the time that he took what was thrown at him medically and the fact that sadly his tumour was too aggressive had nothing to do with him fighting it! But I guess I can see why people say it.
There’s a website called ‘not another bunch of flowers’ which is well worth a look at. They sell appropriate gifts and also talk about this subject.