Seven months ago,I told people about my first lumpectomy via an e-mail and asked them to ‘cross every part of their body’ for me as I honestly believed that everything would be fine and dandy…
It wasn’t and I needed more surgery!
For all sorts of personal reasons I wasn’t able to tell people that it was BREAST cancer apart from really close friends and family.
When the results came and I needed a mastectomy I couldn’t tell people again so I just said I was having another operation and had quite an aggressive sentence ready to respond to their question of,
‘Where is your cancer?’
Now I’ve had my mastectomy 3 weeks ago and feel so uncomfortable, relying on pain relief still and juggling a whopping seroma on my chest I’m finding it very difficult to explain…
I really don’t want people to know I’ve been amputated and I feel so angry when people ask where the cancer is…
I have learnt a softer response to their inquisitive question but even so I can’t bear people being so nosey!
Not all of us are able to talk about our bodies so honestly and of course it has caused problems for me. Close family and friends have been so wonderfully supportive but I can’t really share with them why I can’t talk about my breasts.
Now my chest feels so uncomfortable and I can’t attempt to wear a ‘filled in’ bra that it is making me loathe to enter into the public arena because I feel so uneven. My nurse says I’m hiding and in a way I am but I’m not strong enough yet to answer that dreaded question ‘How are you?’
I live on my own and have no one else to front the phone enquiries but the e-mails are within my control.
Does anyone else out there feel so vulnerable about admitting it’s BREAST cancer to Joe Public? I’m ok about it with close family and friends but all the others just make me want to hide indoors.
I suppose I want to keep my breasts private and not the public property of every Tom, Dick and Harry who deigns to enquire about my health!!!
Oh dear, this has become a rant…
I’m sorry to hear you’re feeling this way and would suggest you give the helpline a ring and have a chat with one of the nurses here, they’re here to support you through this. Calls are free, 0808 800 6000 lines open again today at 9am until 5pm (M-F 9-5 and Sat 9-2)
It seems to me that, having had the mastectomy only three weeks ago, it’s still going to take some getting used to.
Your comments about not liking that people ask where your cancer is has made me think twice; when my cousin was diagnosed with cancer two years ago, I was surprised that my mum hadn’t asked where it was. I felt at time that asking would show that one cared and was interested. NOT asking just seemed rude. Now I know better.
We live in a society where, like it or not, women are often defined and praised for their physical appearance. I’m not surprised that losing a breast makes you feel so vulnerable and embarrassed (humiliated?).
You’re allowed to say “I prefer not to talk about it” if people ask questions that you don’t want to answer. And to “how are you?” how about “not so good - I don’t want to talk about it now - but I will get better”, because you will, in time, feel better.
Can you leave your phone on answerphone and then e-mail people back when you feel like it?
I can’t really think of anything to say that might help except to make use of all and any support and counselling services, such as the BCC support line.
Hi Paola,
Chemo is awful, and you need all the help you can get. Friends responses will vary wildy. I have had some who I thought would be brilliant be useless and some peripheral friends be amazing.
Hi Welsh Girl
Telling people it is breast cancer: Farah Fawcett - she had ANAL cancer. Now, that is a cancer not to want to tell people about!! I have only told people Breastcancer, all one word. It has never occurred to me not to define it.
I have found too that as soon as I change the subject back to them, most people quite happily talk about themselves and their lives, which is great.
I was dx primary + bone metz about 2 weeks apart in June 09. I found it difficult to tell friends, but extremly hard to tell my parents because they were miles away in another country.
Most of my friends coped quite well with the news, but my parents went to pieces and I felt at times I have to comfort them.
Welsh girl - what I find it hard was telling people I have bone metz - who knows, if I was offered op, I might feel the same way as you. People’s inability to respond to bad news and the misconception of “cancer = death” just put us off, doesn’t it? When my news was passed around, it got changed to “she’s very sick and she’s going to die!!” Thank goodness one of my best friends warned me of the rumor before somebody phoned the next day asking “How are you? I heard you wasn’t very well!!” I can’t bear people being so nosey, either! “How big is your lump?” “Has chemo worked?” “Are you sick on chemo?” “Is it small enough for an op now?” I live on my own, too. And get very tired of answering inquiries. If I stay quiet for a few days without replying, they thought they are going to lose me!! You never win, do you? This is such a terrible illness. Maybe your close friends can keep those not so important people updated about the situation, but make sure they do so acurately, unlike mine!
Paola - chemo was my best chance of keeping it under control at the time. It wasn’t as bad as I thought and I’ve managed to keep my hair with the help of cold cap (it did thin a bit)!
Thank you Paola for your response, I really appreciated your words and understanding.
I really hope your forms of communication hit the right note. Your letter to your Mum sounded very real. I’m sure your Mum was able to realise the depths of your feelings far better by rereading your written words rather than responding to a telephone conversation. You gave her time to digest this news and think before she spoke to you. I wished I’d done that with my closest.
E-mailing supports me the most, as we have time to respond when we feel able to…
I trust your support system is reflecting your real needs.
Thank you again for responding to me when you have so much to deal with yourself.
Thank you.
I use that tactic too. Everyone asks how are you - and get either an “ok fine”, or a “not great today - but anyway, how are you, what have you been up to?”. It always works with girlfriends - they pick up the signal, they have done their bit by asking and then can happily change the subject and chat away about kids or whatever. It’s nice to have a non-cancer chat and everyone comes away felling better.
Mind you I felt able to do that, because I get a lot of support at home, so don’t need to rely on friends so much - in fact spend most of my time fending them off. It can be hard to get the balance right though, and everyone is different. I think it is very hard for friends who want to support but can’t have any real insight to how we are feeling and what we want. The best friends at helping have been the ones with medical backgrounds - they are very straightforward, low key , and don’t go in for all the “I know you’re going to be fine - just stay positive” stuff that I’m afraid really annoys me.
Finty you have said exactly what I have been thinking, why is that people feel they have to tell you that you are going to be fine, they don’t know if we are or not. I was told I was ‘lucky’ the other day as I will be monitored regularly from now on…lucky would be NOT getting this awful disease in the first place!
phillippa x
hello
I think people are really telling themselves that we are going to be fine, because the alternative is literally unspeakable. I would rather they didn’t and sometimes want to say ‘how do YOU know that when I don’t?’, but of course I grin and keep schtum!
thank God for this forum, where we can tell it how it is for us
xxx monica
Monica do you sometimes think that the smile on your face is a fixed one…because thats how it feels to me. I smile because thats what everyone wants me to do…they don’t want me to break down and cry in front of them because they can’t deal with it.
I can’t believe how often I look on this forum and the comfort that I am getting from everyone on here…
Thats it exactly, Phillipa!
I guess people can’t cope with it…what I find very difficult is when they are dismissive about it to my kids. They are 24 and 22, but my daughter especially gets very upset when people say ‘Oh, she’ll be fine’. She would say the same about the fixed smile. Crap, isn’t it?
This forum is such a comfort, I feel so much better for it
love monica xx
I feel as though I have made lots of friends through here even though I have never met anyone in person, I have looked at other sites on the internet but this one is the best by a mile.
Family are great but on here I can say things that I wouldn’t say to anyone else.
x
It is so difficult. Last week I got really down about it, felt very lonely even though constantly in contact with people who want to help. I felt I would never be able to relax around other people again, and have become very reluctant to start properly socialising again. I dare say things will improve when the intense treatment has stopped, and it is possible to go for longer periods without thinking about it. But so far I have found this much harder to deal with than the treatment.
I think the realisation is setting in that we really are alone with this for most of the time. I am naturally very stoical, always one to avoid a fuss and just get on with things. I don’t want to constantly complain to my husband, I certainly don’t want to burden my kids any more than necessary, and I think friends really just want to think all will be well and don’t want to process the reality (as I am stage 4 the reality isn’t all that great). So as you say, thank god for the forums - it is very comforting to know others feel the same, although heartbreaking that so many of us are in this dreadful situation.
It is a really lonely place sometimes, isn’t it? even when you’re surrounded by people. So often people want to show they care but can’t really deal with the detail or the bloody awfulness of treatments, and Finty, the position you’re in at stage 4 must sometimes make you feel so much more isolated.
guess we need to keep talking to each other
take care xxx
monica
I sat in the oncology dept this afternoon waiting for my rad treatment and couldn’t believe the number of people in there with me, either waiting to see the doctor, or for chemo or radiotherapy, unless you have been in an oncology department you would never believe how many people could have this dreadful disease.
Everyone looked the same as me…lonely and scared, trying to be positive and not wanting to cry. My OH comes with me everyday as he knows how much I would hate going on my on he just sits and burys his head in his paper and tries not to look at everyone there. He’s just as scared as I am but tries not to show it. We make jokes as we come out of the hospital, daft ones but anything just to put some sort of normality into it…trouble is I have forgotten what ‘normal’ life is at the moment.
Any way 4 down, 11 to go.
finty, I was very moved by your message. I can’t imagine what it must be like for you.
But I would like to know what would you like from your friends and family. What would help? If there’s anything you’d like them to do, or not do, or to do differently, can you ask them?
And, what, if anything, would you like from us, besides reading, writing and responding?