I am really upset having had a totally pointless visit to the hospital to have a 30 second grope of my breast and the recon by the BCN. What is the point of missing a morning out of work for that???
Admittedly she is a really sweet woman but what can they do? she really upset me when she offered to refer me to a psychologist because i was so upset at having to undress(because I look like a freak). The focus on feeling the stupid breast - like that will tell anyone anything anyway - made me so upset that i wasted the visit and did not ask about the things i wanted to, chiefly finishing off the recon so it looks more like a breast. Totally pointless visit if she thinks I need a psych because I have a disfigured body, i need a better reconstruction, not a psych.
So, I cancelled all the follow up and I am not going back again to be humiliated as this is the second time i freaked out getting undressed, for no benefit. I have been stresed out about this for weeks,but was hoping to get to discuss finishing off but because I panicked it did not get mentioned.So how does this kind of follow up help? There is nothing reassuring about it, just embarrassment.
Hi Jane,
feel free to rant about this kind of thing,when I was having radiotherapy,there was no changing room available for me ,no gowns and I had to get undressed in the radiotherapy room with some creepy guy (some member of staff )still don’t know who he was actually watching me undress.I complained both to him and to a senior member of staff and after that they treated me slightly better.I always feel guilty about making a fuss but sometimes you really have to stand up for yourself and also make them think about what they are doing .I can’t believe that they would have treated everyone with the same lack of respect,maybe because I’m a foreigner they think the rules don’t apply
I also hate the embarrassment and the idea that once you have cancer your body almost becomes public property for others to inspect
Hi Jane,
rant away, breathe and calm.
We have all felt like this , it is normal and you don’t need to see a psych unless you feel you may benefit from seeing one. The bcn should have enough experience to know and understand how you would be feeling today so she has failed at her job. Have you a choice of bcn or is there only one? I would make another appointment and ask for another bcn and then when you get the appointment take control. Ask your questions and then if and when you feel ready let her examine you.
Hope you are feeling better.
Love Debsxxx
If it’s your 1st anniversary, did you not have mammos done as well as physical examination? I know that breast care doctors & nurses see all sorts & conditions of breasts & bodies and are really not bothered by what they see - it really is all part of the job to them. Perhaps you could ask for a referral to a surgeon to discuss your recon and not just see a BCN. With all the treatments, mammos, scans, examinations,chemo & rads, you just have to think well they’ve seen it all before, and when they go home at night they are not thinking about us and our bodies - we’re just that day’s patients.
Hi All
Thanks for your posts. LL, you are so right about being public property. Debs, your perspective is really good- I had not thought of it that way.And Redders, I know we are probably just flesh to them but it does not help,there is no dignity in being the only one with no top and disfigured boobs. i am so embarrassed and uncomfortable in this body that I can not bear being naked.
I’m just about to PM you again but just wanted to add support here. It’s not good enough that you’ve been treated so carelessly and as Debs says, BCN is definately showing lack of awareness. I’d so love to ‘cast a spell’ and put these idiots in our shoes for just an hour or so and see how they cope. It seems that once you’ve been touched by BC, you should suddently accept yourself as a less than worthy citizen and be grateful for any little scraps you’re thrown. (Oh by the way LL, sorry to say but lack of respect wouldn’t be because you’re a foreigner - believe me it happens to most of us at some point!)
I have to be honest and say that (apart from consultant at initial diagnosis and BCN telling me I ‘should not expect’ much of a ‘mound’ from recon, I have since been treated very well and this makes me even more angry when I see others not getting what they need. Mind you, I have always gone with my agenda and am bl**dy minded and keep returning to this if I get railroaded! This is OUR bodies, OUR lives, OUR minds and it’s not OUR fault. It’s a right not a priviledge to have the body confidence that we once had - god knows this disease is tough enough without being made to feel freakish on top of it.
Jane, I’m beginning to rant (and sorry to everyone else for hogging thread time - I’m going to PM.
Lots of love to everyone and don’t stop pushing (or get someone to help you ‘push’) for what you need. Good treatment is not a luxury, it’s a right! … OK, I’m off!! xxx
I really believe that some medics have been so long in the job they forget that to us, taking off our tops is mortifying. My surgeon (God Bless him, you know who you are, you old B) on initial diagnosis, had me take off my top and bra without pulling round the screen, whilst my husband sat at his desk (for the surgeon knew it could have been a friend, because he never asked). He then had a quick prod and sat back at his desk, chatting to my husband watching me struggle to get dressed whilst trying to listen to what he was saying. However, my lovely oncologist registrar was so caring, pulling around the screen, not allowing the student in with me, going out whilst I got dressed - so it is individual but very very horrible. If I wasn’t so nice, I would love the old twerp to have something wrong with his whatsits and have a load of females sitting gawping whilst he took his trolleys off!
Everyone I saw pulled the curtains round and if I was being seen by a man they all asked if my husband would like to be present by the side whilst I was examined. It was only when it was a female Consultant that he sat at the desk. OH attended all my appointments (I’m now on yearly review) and everything was directed to us as a couple. The Oncologists were exceptionally good when I was having menopause issues, they discussed things to do with my loss of libido etc with both of us; they also always showed concern for my OH and how he was feeling and offered for us to see a psychologist as a couple if we felt it was necessary. (It wasn’t - I went on my own for 6 sessions of counselling).
Nobody at our GP surgery bothered to ask him how he was feeling about things if he had an appointment there!
As a nurse myself all can say is I should put in a formal complaint about this womans treatment of you because
1 it is totally unprofessional
2 part of her job is to consider Patient dignity and confidentiality.
3 you have had life changing surgery and treatment and are now left with a poor body image (normal for this type of treatment) and are therefore going to be sensative. Who in theire right mind wouldnt be?
4 Main part of her job is to know and understand this!
I have been lucky in that I have been treated with respect most of the time (not all) but I can stand up for myself or if not have mates who can - one of whom is 6foot + and enormous (should see him trying to change nappies) but this type of treatment is terrible.
The one who needs councilling or more to the point retraining to learn how to do her job properly is her.
Is there somewhere else you could go for the information you need? is there more than one BCnurse available?
Are you able to talk to your GP about it?
gx
p.s so many posts on here make me realise that my GP practice although recognised as such is really a pearl beyond all price.
Glenna, thanks for your comments,it is good to know that another nurse would have dealt with the situation differently. I naturally tend to feel everything is my fault or responsibility - you, Diep and Debs all offer a fresh perspective on the nurse’s role, so thank thank you so much.
Cathy you are right, I think they do forget we are people. Strange because I really feel it is like we are canvases to be drawn on to show off their skill (or not).
I rang BCC helpline today and spoke to the loveliest woman who did not think I was unreasonable and was really good in listening and suggesting ways forward, so I am going to think through the options. I still feel oddly relieved to have stopped all the follow up though and only now truly realise how unsupportive and destructive it has been for me. Thinking it through I realise that this is really about the practical stuff and the offer to refer me to a psych is just silly and would be a waste of a psych’s time as I am not “finished” and it is that which is largely distressing me.
Thanks to all and Cherub and Glenna sounds like you guys have excellent health care teams!
Glad to hear you got some support from the helpline. I do agree with Glenna about how health professionals are so different. If I thought any of my patients went away without the information they needed or if I had not been able to understand their concerns, I would feel I had failed, not that the patient had been difficult or anything else. Your nurse should have been able to work out what was your main concern - in your case the fact that you hate your body at the moment and take it from there. I do think referral to a psychologist could be a worthwhile move if you really had a major problem with your body, but from what you say, it was too soon to be jumping to this. It does happen where the rapport or whatever you want to call it just isnt there and its up to the clinician to work out what to do next.
hi my name is kimberely i dont quite know how to use the forums properely as this is my first time,finished treatment one year now had double reconstruction and need more surgery soon i hate my body and will not even let my husband see it,feel really tired doctor has just signed me of work have aches andpains and headaches,really emotional at the moment and have severe sweats from the tamoxifen and always worried that i will be visited by cancer again,really fed up,sorry if i am posting in the wrong place,is their anyone who can understand me please
Plenty of people eill respond but don’t forget the value of the BCC Help Line as they may be able to discuss body issues and make some recommendations which you might find to be helpful. Do give it a go - nothing to lose.
You not alone, many of us cannot bear lfor husbands,partners to look closely at our bodies anymore or hug us or try to comfort.
So understand what you mean and like many of us, share the body confidence issues. A couple of us here are also single (just to throw another spanner in the works) and trying to ‘reveal’ yourself with confidence and acceptance to a loving partner, let alone a totally new person in your life is indeed a daunting thought. You’ll probably find some very useful thoughts/advice on ‘Sex after Recon’ thread. A lot of the posts are very ‘raw’ and honest but they really hit the spot and, I feel, help you realise you’re in the company of people who really understand this.
Lots of love. Cathy x
PS: as you’ve already seen from Regina’s response, there’s always someone who’ll reach out and hear you and this place is such a comfort. Keep ‘talking’. I really believe this helps xx
Just to reinforce what Regina said about the Breast Cancer Care Helpline- they are there for support and information. It is free and confidential. It is open from 9.00am-5.00pm on weekdays and 9.00am-2.00pm on Saturdays.
I too understand the body confidence crisis. In fact, it is not just embarrassment with lovers or partners, it’s as Cathy and Debs and LL pointed out common enough when being examined. Seems so odd to me that I was able to be examined without embarrassment when first diagnoised and have got progressively more uncomfortable taking my clothes off as I live with the reality of the surgery. It is a real change in me in the year since it all started. And it does affect your lifestyle - I am fine and function well fully clothed, working, caring for others etc but can not even handle being in a room with someone for more than a minute if I am undressed without feeling like dirt. And I felt like dirt on Wednesday, could not manage a conversation and could not bear to get away.
And to make it worse I feel guilty because I realise I must have come accross as rude. I know that nurses etc are busy but they see lots of patients and it would be nice if they could anticipate the way we feel and actually, if I had been prepared that it was just a grope and how are you, then I would not have bothered.
Kimberley, I hope that something can be done about your symptoms and wish you well.
Hi All , You have all touched on my biggest hang up, undressing and being prodded. I find myself completely repulsive , overweight, large dangly boobs, scars from WLE and lymph node removal. Do I tell my onc how I feel ??? He is very good and considerate However I want my horrible body to belong to me not at the mercy of others prodding about. I hate this BC thing but cannot make it go away , I am due for a check mid Sept and I am getting very snappy and snarly at the thought of it. It has to be done for our own sakes I sometimes feel like saying sod it but manage to get through it mortified, scared and very very angry. ALSO cannot stand OH near me!!
Thank you all for having the courage to put into words how you feel I feel so stupid being like this but to know I am not on my own is such a big help!!! I will be two years on in NOV.
I wonder how other women deal with this and if it is woeth starting a thread of things to try. In my case I think getting the job dfinished will let me know if this is a deep rooted problem or just natural reticince in stripping off because I do not look my best. I read an article somewhere which advised looking at yourself in various states of undress and focussing on what you find pleasing. At the time I was bald from chemo, recon manky and unfinished and figure far from perfect. Needless to say not finding anything to like only reinforced my disgust. I have read lots of articles and find much of the advice fine in theory but what have people done which actually helps??? I mean, they say some women go on to lead normal lives, incuding sexually so what are they doing to get there.
Maybe there are real things that work for some people and we need top tips to try? Girls, we can not stay stuck here, this is not fair after what we have been through.
Any ideas - shall we start a "How did you get to body confidence after surgery " theme asking others to give us advice.