I have thought long and hard about replying to this thread, almost didnt as i have been hurt by recent responses on other threads when i have just posted and been true to myself.
Firstly 'thank you' too the ladies who have taken the time to travel to London and been totally honest about how they have felt about the issues and answered the questions posed to them..
I had the opportunity to attend the discussion on 'body image and intimacy' Decided not to attend for reasons i will not disclose on a public forum, however i want to put down here how i felt about my body and something on intimacy and be REAL.
1) After lumectomy delighted with breast, only to be told no clearance on margins so a mastectomy.DEVASTATED!!
2) After mastectomy at first surgeons appt, she says oh its lovely meaning the healing, i respond with 'its disgusting' and burst into tears. 'Oh you can have re-construction' surgeon says. I feel at this point i wont live long enough for that.
3)It gets worse i need chemo and after hair loss look in the mirror and see this woman who is gaining weight , no hair and one boob and wonder if suddenly an alien has taken over my body.
4)My precious older daughter cant look at me naked, she is scared.
5) My already struggling marriage is thrown into a mess.
6) I miss my nipples which where a erogenous zone
7) I am thrown into the change and miss those surges of oestrogen mid cyle and urge for sex.
8) i sweat and think i smell, and dont want sex as i feel horrible about my body.
Yes i agree with these posts the issue of intimacy and body image was NOT DEALT with.
From someone who says it how it is
I listened to this podcast yesterday and without rambling on I really feel it was a missed opportunity and 99% of the item was off topic. What has the cold cap got to do with intimacy??
Very disappointing and nothing to do with the subject that was headlined.
to be totally honest it was sugguested that i didnt say anything about my husband as he wasnt there to defend himself, and i admit that its easier to type my true feelings rather than voice them, so if its any help to anyone im 36 and since my diagnosis it makes me feel sick when he touches my chest area, thats how much it has effected me
Good for you for going on the "show" then but were you asked personal questions? Did the answers just not get broadcast? Was the interviewer at all in touch with the topic?
I have to say, well I don't have to but I WILL, that none of the podcasts I have listened to have been very good but to the uninformed I guess they provide a modicum of information and maybe that is their objective.
The prickly topic of intimacy, as far as I can see, has not been tackled on any site in detail with 'live' people.
Perhaps Part 2 will offer something of substance and hopefully the team will heed our comments if the programme has not already been finalised. In any case it is an opportunity to grasp the nettle.
Just to say that i am one of the women on August's interview, and it was hard during the recording to talk about sex and stuff, i personally did get abit stage struck and as i have only had WLE, chemo and radio didnt want to come across as poor me, but i personally didnt embrace loosing all my hair, have not got a fantastic hairstyle now and my diagnosis has had a HUGE effect on my sex life, in fact i can barely remember what a sex life is, and i cant remember who i was before BC, it has had a huge impact on my life
I thought it was a bit of bosh too, the two women didn't represent how I feel. My first thought was this could be the end of my sex life. I said this to someone I was in hospital with and she looked really shocked as i don't think she had one - mind you she did recommend leaving the hospital dressed up to the nines and eating at carluccios. The start of my love affair with that cafe even if it was the end of sex as we know it
I agree with much of what Snowwhite says. I listened to the podcast yesterday. In no way does it reflect the range and depth of feelings which were expressed on the thread. Yes the two women featured were indeed very nice and the story they told is one I have heard filtered through breast cancer charities many times before, but I don't think their accounts are representative of the huge differences among women following a breast cancer diagnosis, The podcast was barely about body image or intimacy...just a few stock and uplifting thoughts on the fun to be had with wigs and how someone's husband revelled in jollying up the cold cap room. I'm afraid I laughed when the interviewer, speaking in that particular grave deep voice those without cancer use with those who have cancer, assured her listeners that the two women interviewed now had 'fantastic modern hair styles.' And bizarre quote of the podcast for euphemism must surely be: 'Just because its C it doesn't mean its the big D.'
No doubt some women really do talk and think like this..but I don't and neither I suspect do many other women.
interesting comments snowwhite. I look forward to August. I do take your point re intimacy ~ maybe that issue requires a podcast just for that ~ sounds like you would be a good candidate to be interviewed? Rosemary
Sorry to say I was extremely disappointed with the podcast. Entitled "Body image and intimacy" I had hoped it would explore issues to do with body image and intimacy. It didn't. It touched on them. It listed some of them.
These two nice ladies did not go far enough to explain, still less explore what it meant to them to have had cancer and to have their bodies changed: how it affects their sense of their own identity - which is so closely connected with their sense of what it is to be female, how it changes their perception of themselves as women and how this affects the way they relate to other women, and to men, and their sexual relationships, the way they feel about sex, the way their sex lives change, the way they respond sexually, how important this was to them, how they faced irrevocable loss, what thoughts they had on the meaning of their lives now that they are forever changed in these particular ways. They did mention some of these issues - loss of hair, weight gain, how would partner respond to changed body, how do I respond to changed body, but they did not say anything interesting about them. They did not actually deal with 'intimacy' at all, so you could have left that out of the title. 'Intimacy' by definition is very personal, but if you are going to mention it then deal with it, otherwise don't say you are going to.
In fact all too quckly they were doing the 'positive' stuff - this is doable, this was hard, but hey we're coping, we don't want to upset anybody so let's not say anything remotely challenging or controversial. Another contribution to the collective denial about the true impact of bc on people. Hence, a failure to seize an opportunity to face reality and move forward into unknown and very painful territory, together, holding hands.
Perhaps in the next programme...
I have just listened to Julys podcast and found it very interesting and informative. I was dx Dec 21st 04 so was pleased to hear the views of someone who was dx a time ago, I often think that as I am 3 1/2 years from dx that I shouldn't have concerns but of course I do! in fact it catches up! I look forward to Augusts podcast, we all have a story to tell. Thank you for sharing your experiences. Rosemary
Dear forum members,
Just a note to say our July podcast is now live on the website. It's a special extended show, devoted to the personal experiences of four women who all have experienced breast cancer. It deals mainly with their relationship to body image and intimacy, and specifically how this has changed following their diagnosis.
This show is the first part of a two-parter; the second show will be live from the start of August, within the next two weeks.
You can listen to the show here - http://www.breastcancercare.org.uk/podcast or on iTunes here...
Some of you may remember a few months back when I posted a message on the forums, asking for your thoughts and for potential interviewees. We were lucky enough to interview four women - Ann, Anna, Jane and Tracey - who all really opened up to us about their feelings. I'd like to express my personal thanks to them for their committment, honesty and openness. As Tara, says in the podcast, it can not have been easy to come to a building, with complete strangers and discuss intimate matters - and so to our guests, we appreciate your contribution so much and could not have done it without you.
You may remember, we asked forum users for their thoughts and comments. I can honestly say that we had no idea so many of you would get in touch and share your feelings. Thank you so much. The amount of responses was incredible and it left me with a huge dilemma when editing the show; how could I possibly include everyone's feelings and thoughts?
Whilst editing the shows and listening to the words of our interviewees, I came to realise that everyone's journey, everyone's experience of breast cancer was different and that there was no way to cover all the issues surrounding body image and intimacy. Each query we received was unique and to choose - for example - a question about say, lymphoedema, over a question about another topic, say reconstruction, was wrong.
Following discussion with the team, I have made an editorial decision to feature, exclusively, the interviews we conducted.
This is not to say that their opinions are more valid than those who emailed us, or that the messages we received are not worth answering. Rather, I feel the experiences of these women deserved to be heard in context, they were kind enough to be honest and give up their time for us and I feel, like the messages posted on this forum everyday, that there is something in every interview that you can all relate to.
I hope this decision does not disappoint any of you. There was simply so much material, with so much to say, that I felt to break up interviews with questions from the forums would be to lose the spirit and the message of the show - that there are common areas and feelings for each person diagnosed, but that everyone's experiences of breast cancer is different, unique and personal.
We also feel that if there are other places where specific questions can be answered. If you have any personal concerns or issues you'd like to discuss, PLEASE get in touch with our Helpline (0808 800 6000) or Ask the Nurse email service (email@example.com) where you can get a individual, detailed answer to your queries.
After listening back to our shows, I am very proud of our work. I'd love to hear what some of you think, just email with any comments or leave a message below.
Thank you to our interviewees and thank you for listening.
James Grainger, Web Editor, Breast Cancer Care.