Can't wear my softie all day yet, but am upset without it in

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It’s three weeks since my simple mastectomy, n I’ve been doin well - I hated the “crater” at first, but as the bruising subsided it didnt look anywhere near as bad, n I don’t have any problem looking at the scar.

But this is the third evening I’ve been upset. I tend to get undressed after tea, as the mx site’s quite painful by then n I’m glad to get my mastectomy bra n softie off! On Wednesday I’d bought a really pretty dress n tried it on when I got home. Then in the evening, I tried it on again as I was getting undressed - n that second time, I’d removed the softie. It didnt look as nice without the softie in, n it seemed to hit me then that I’m always going to look like that in the future.

So, I can cope with looking at my scar n find it reassuring that the cancer’s gone now, but I don’t like seeing me in clothes without a left breast.

I guess I’m going to go through periods like this as I come to terms with everything, but I just feel really overwhelmed n weepy right now. Guess I could pin my softie inside my nightwear. I dont want reconstruction, I just dont want a clothing gap when I look down. Am I making sense?

I’ve got the BCC booklet about choosing mastectomy wear etc, and it talks about putting ribbon inside ordinary bras to hold a prosthesis, if u dont wear mastectomy bras. Well its a bit painful for me to wear a mastectomy bra by this time of day - maybe I could stitch ribbon inside my nightwear somehow to hold my softie, just until I’ve got over feeling like this. I’ve got some luvly new nightwear that friends have bought me recently - I know you can get the mastectomy night wear, but I want to wear the new stuff from my friends, not buy more.

Can’t believe I’m feeling this bad as I’ve been doin so well, n my friends think I’m really brave.

My thoughts are all over the place at the moment - something else i’d like to say about pls. I spoke to my BCN the other day - she’s lovely n she woz asking how I was doing. I told her about being really pleased with myself about my arm exercises, n she said “well you’ve only had a simple mastectomy” (meaning that with no lymph odes involved exercises wouldnt be as difficult for me etc). I knew what she meant n everything, but it was the word “only” that she used. Guess I’m just being over sensitive, but the way I feel is that I know I’ve been lucky that I’ve not had lymph node involvement etc, n that I dont need any further treatment such as chemo, tamoxifen or herceptin - but even though it’s only simple mastectomy, I’m still without that boob, n if it was her that had lost her breast, wud she want it to be referred to as ONLY simple mastectomy?

I’ve digressed though - the worst thing is thinking that say in the future I have to go into hospital for anything at all - well I’ll be there in nightwear with only one “boob mound” not two, n everyone will know I’ve had a mastectomy. I just hate looking down at myself like now when I havent got the bra n softie in. How come I can look at my scar and look after it n apply cream etc, but I dont like looking at myself in clothing without a softie?

I feel so low right now - I hope I’ve not written anything here that would upset anyone else, cos I dont intend to.

Luv to you all! xxx

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Hello Shelley61,

I have camisole tops from M&S with the built in bra shelf that I can put my softie in. I usually have to check its not slipped during the night though!

Another option is perhaps to wear a very lightweight bra, either a sleep bra or even one of the post surgery bras with your nightwear. Or even an ordinary crop top underneath. I’ve seen that shops like Next do cardigans and fleecy tops to be worn with nightwear and these would hide the fact that you were missing a breast if you couldn’t manage with your softie.

I think it takes a while to get used to the new you, three weeks isn’t so long and losing a breast is a big change to for your mind to take on board. Give yourself chance - it sounds like you are doing really well coping with having had the mastectomy so be pleased with yourself for that. As for being over sensitive about people’s comments - I think that is normal, who wouldn’t be with all you have been through.

Good luck.

Jill

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Aww Shelley, sweatheart.
Only 3 weeks since your op, so its not a surprise that things are still a little physically and emotionally uncomfortable.

I am a year+ down the line, but always take my bra (and prosthesis) off as soon as I come home from work as it is just so much more comfortable. It does get easier to wear, after a few more weeks, and I can wear it for a whole evening/night out after a full day, but if I can get it off - I will!!

I think we are all different about how we feel about looking down and seeing a flat side. I’m lucky that I’ve never had a problem with it, but I can understand that some people will find it evry hard. Give yourself some time.

As for ONLY a simple MX, I agree that is insensitive wording. I did had lymph nodes removed, but never really thought about that making it a ‘bigger’ op. At the end of the day, the missing boob is the main thing. I think we will all understand that what you are feeling is just as big and valid as anyone who has had a lumpectomy, simple or lymph-node MX.

It’s not a competition.

Hugs to you.
Flora xxx

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Posted on behalf of AlexG

Oh Shelley, I do feel for you, sweetheart. That nurse should have her mouth washed out with soap and water - there’s nothing SIMPLE about what you’ve been through. I amazed that someone who has qualified as a BCN should be so unkind. I didn’t have a mastectomy but a WLE and axillary clearance, plus 25 rads and 5 years of Tamox. It wasn’t a walk in the park but I think a mastectomy is a hundred times worse and you have my every sympathy.

It is still very early days for you and your wound is bound to be tender. Give it time and I’m sure things will get easier. In the meantime, remember you have lots of people on this site who will know exactly how you feel and will listen when things get tough.

Cyber hugs,
AlexG

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Dear Shelley and Alex,

I am sorry I seem to have caused some confusion by moving your original post, Shelley. I have now deleted the other thread but I copied and pasted your post first Alex.

I hope that’s ok.

Very best wishes

Janet
BCC Facilitator

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hi shelly i had my mx 12th nov last year i remember like you, i was upset mainly because you are in shock you have been told you have cancer, then its the long wait for results then you are having a operation you do not want you are scared and sad you have had mx and then its more waiting for results then you have to recover, bodily ,mentaly and emotionly and then you have to learn to come to terms with what has just happened your life as just been turned upside down 3 weeks is early days you are only just starting to recover it is not a simple mx it is a big journey and you will get there i am a year on now, and happy with myself and moving on in my life you will experiment with clothes and you will learn to love the new you. along the way you will talk to some lovely people who will give you lots of good ideas and advice it will get better missmessyx

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Have a look at breastfree.org - it is a very useful resource.
It is such early days for you - don’t try to run before you can walk. I spent a year with one boob and it has been 9 months since I had the other one off. My main priority is comfort and it is a real balancing act to find the right bra and prostheses. Still haven’t found it!

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Thankyou so much to all of you for your lovely caring comments, and for the advice as well. Jill, I love the idea about wearing the cardigans - I’ve got two already and they’re quite baggy so they’ll cover me up so that I can’t tell I’ve got the missing breast when I look down. I was so upset this evening, so I couldnt see the wood for the trees, otherwise I might have thought of the cardigans myself.

It seems there’s a common link with all of us whether we’ve had WLE or simple or node mastectomies - it’s about our body image isnt it?! Reading through what each of you has said, I’m realising that any extent of breast surgery impacts on us because it’s such a personal area of our bodies n whether it’s WLE or mastectomy, it’s about the scar and how different we look after the op.

MissMessy I love your comment that it’s not a simple mastectomy, it’s a big journey - that just says it all for me! So, that’s just the same for you too AlexG - dont underestimate how big your treatment was too - dont know about you but my friend struggled with weight gain all the five years she was on tamoxifen and radiotherapy is very tiring too!

Flora, its reassuring to hear you still need to remove your bra etc when you get in from work - I wore mine all the time for the first few days, but this last couple of weeks I havent been able to, so guess I thought I’d taken a step backwards, so thanks for making me realise it’s normal to feel like that!

MsMolly, Ive not heard of breastfree.org so I’m going to have a look there after this - good luck wth finding the best bra and prostheses! I’m realising just how early days it really is for me yet.

As for my BCN, I’m sure she didnt mean to upset me, but it does seem to be a general thing for her and other clinic staff to use the word ONLY. 9yrs ago I had high grade DCIS which they counted as “Only DCIS” This time theyve told me I had Paget’s disease which “isnt really cancer but has to be treated the same as cancer” and then the comment about “only simple mastectomy”.

I think that when I’m fully recovered, I’m going to think of a nice way of telling them how it feels to hear comments such as that. When they said about Paget’s not being cancer, I explained I’d told people I have cancer cos I thought I had. So the BCN and consultant said that as it’s only in situ cancer, they dont count it as cancer cos it’s not invasive. It was quite confusing being told this, when I was trying to get to grips with my diagnosis and explain about it to my family, friends and colleagues.

So everyone, thanks once again for replying to me - you’re all great people!! Take care of yourselves, and I’ll let you know how I’m going on.

Big hugs to you! xxxx

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Dear Shelley,
I’m so pleased you posted up such honest feelings about your situation. At 3 weeks, with such a range of mixed emotions it is quite unbearable for you.
I had my mx in February 2010 after two unsuccessful ops.I was horrified by the thought of what was going to happen, quite hysterical so they brought my op forward!Afterwards, I was incredibly calm and really surprised myself how I just accepted the situation. I had cording and an arm that didn’t work after mx so needed six months of physiotherapy, probably because I didn’t ‘do’ my exercises properly!!! (A warning there!) So I was pretty upset about loss of strength, pain, weakness etc but never the loss of the breast!
Now I am nine months on, I have the correct prosthesis, excellent bras (Amoena Mona style for a small chest, very very comfortable) have adapted my clothes look, even supported other women here about fashion ideas to help disguise the area whilst wearing a softie…
Scarves are great at giving a bit of flair,disguise and warmth at this time of year! So if you want to go without your softie just double up the layers and add a scarf too.
However,despite feeling confident in clothes, now I’m beginning to feel sad and disappointed about my flat look, obviously a delayed reaction!
So I was very interested in the suggestions posted here.
So, Shelley you are not alone!
My current concern is going away with girlfriends where we’ll be sharing bedrooms. At home I’m fine and on holiday with my own room it was easy but now I’m in a real whirl…
Thanks for the suggestions of nightwear tips. I feel stupid not sorting these issues out before but as I say I think mine is a delayed reaction.
Like you Shelley, my BCN made similar comments and I feel as if I’m wasting her time if I ask for any support because I know there are people far worse off than me…
So Shelley, I will be following your thread with interest.
Thank you again for being so open and honest about your feelings. I think so many of us can identify with you.

Welsh girl xx

May I ask MsMolly for the exact breastfree site details again as I couldn’t come up with any results when I looked.
Thanks Wx

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Hi Shelley

I had my mx two years ago because I had dcis. I bought some nice nighties to take into hospital with me but I ended up staying in my theatre gown until I came home. When I came home I decided to wear one of my new nighties. I put it on without a bra or a softie and looked in the mirror. The pretty nightie looked awful (to me) - I am quite large busted (40E) and I got such a shock to see one boob and nothing on the other side. I cried and howled! I called the surgeon all the names under the sun. My poor husband didn’t know what to do! Up to then I had handled it so well. By the time I had finished I felt a lot better for letting it all out though.

It isn’t easy and it is very early days for you but it WILL get better. All the lovely ladies on these forums will give you advice. Take advantage of specialist shops for your underwear. Go and get measured when you are ready and get advice from the staff. It is worth going to one of these shops even if it is only for the first time then you can order by phone or online when they have got your details and requirements.

I can’t believe your BCN said that to you! There have been threads on here about upsetting things family and friends say (and they would make you gasp!) but you would think a BCN would know better.

Look after yourself.
Maude xx

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Welshgirl, I know what you mean about sharing a room with friends. I was going away for a few days with a friend I have known for 30 years and I got myself in a right state about it. In the end I wore my bra and breast form all night. Not very comfortable but I was ok.

Love
Maude xx

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breastfree.org/

Here is breast free link again Welshgirl.

We are all different characters and all have differing relationships with our friends, but I just go blazing in and say that my false tits are driving me mad and I take them off. Most people are fascinated by how much the prostheses weigh and my girlyfriends all want to see the scars. Once all that boob stuff is out of the way you can just concentrate on having a good time without being uncomfortable or shy.
But I have to say that I am more comfortable now that I am completely flat compared to when I had just one breast. I felt most odd then and never adjusted to it - which is why I opted to remove the other prophylactically.

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Thankyou for all your replies - I just wish i could meet you all for coffee to say a proper thankyou!!

It’s lovely that by writing here about how I feel n gettin your lovely replies, you’ve also been able to reply to Welshgirl too. It’s not an easy issue is it? I think I’d be inclined to be quite open about it as well. I’d probably come out of the bathroom without my softie/prosthesis under my nightwear, n put a scarf with a longer end down my “empty side”. Then I’d probably explain it’s there to cover the empty space in case they’re embarrassed. Then I’d see what their response was - if they said it didnt matter, then I’d probably leave it off, but if they didnt I’d cover any embarrassment by talking bout where I got the scarf from etc.

I had another thought about wearing prosthesis with nightwear - but don’t know how easily or practically it’d work out. If you sewed two press studs onto the front domed part of a softie, then the other halves of the press studs onto the inside of a nightie or pj top, would that work, so that the softie could be attached into different nightwear that way?

My BCN is a really nice person and has been really kind with me in every other way, so I hate having written this about her here. I dont think she’d intentionally upset anyone, n I DO think I’m over-sensitive at the moment. I changed my profile details in the night last night, cos I realised that by having my town on the profile, she or her colleagues might just read my posts n realise it was me by the information I’d written. Everyone’s human n gets things a bit wrong at times, n that’ll go for BCN’s too! I’d hate to make her feel awkward by recognising herself on here.

When I go for my prosthesis fitting, I want to talk nicely to her about what she’s said to me, because I’ve been lookin forward to the fitting for the proper prosthesis, so dont want to still be upset with her by then. I wish we could get our prostheses on prescription, then we could go anywhere to be fitted, rather than having to go back to the hospital. (Hospitals are for clinic appts n treatment!) I think my nearest shop is about 50 miles away. Do the shops have more selection than at the hospital? If so, I might have a trip to the shop to buy my prosthesis, instead of getting the free one from the hospital.

I just wish the term simple mastectomy didnt exist - we all have scars n have to cope with body image issues whatever surgery we’ve had done. Doing the exercises has helped with my body image, cos of needing to stand at a mirror. Mind you, I feel sorry for my poor neighbour. Hope he can’t hear the music, as I’ve been exercising to “Wonderful Tonight” three times a day!! Lol!

This is a real journey isnt it - not one any of us wud have chosen, so I’m really grateful to all of you for helping me with how I’ve been feeling. From what I read, I can see how I’m going to have different feelings n things that bother me thru my recovery.

I can’t believe how tired I get these days - I’d love to reply more fully to some of you here, cos you’ve shared so much about yourself, but I hope you don’t mind that I don’t as I’m really shattered now!

Much love n hugs to all of you!! xxxx

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Hi Shelley,

Have you thought about giving the helpline here a ring? They may be able to help you with information about where you can go to get prosthesis fitting rather than your hospital.

The helpline is closed now until Monday morning at 9am, but I’m sure they’ll be able to give you some support on this issue, so do give them a ring. Calls are free, 0808 800 6000.

Take care,
Jo, Facilitator

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Hello Jo,

No, I hadn’t thought about that at all. I think I just presumed it had to be at the hospital, as the nearest shop that sells them to me is Leeds as far as I know.

I’d love to go somewhere different than the hospital as I must admit I feel I’m only a trivial case to them.

I consented to medical photography because Paget’s disease is quite rare, and I dont know whether this sounds strange, but the medical photography felt lovely. It was this big room with those “umbrellas” you see at proper photo sessions, and in the strangest way it was a really positive experience. I just felt so nice about my body standing there being photographed - in spite of a not very nice looking nipple. I want my bra fitting to feel nice too and to feel like a celebration that I’m getting a new boob - and not that my mastectomy was just simple! I want out of my hospital system if possible.

I wouldnt even mind another hospital if there’s not a shop nearby me. About 30 miles away there’s a hospital that my Dad attends for his chemo for non-hodgkins lymphoma - I think they’ve got a special centre you go to for beauty therapies etc - I’m going to go online and see if that centre fits you for mastectomy bras as well. Then, if so, I can mention it on Monday to your helpline.

Thanks very much Jo! xxx

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Sorry, I meant to say for mastectomy prostheses, not bras, and I’ve been online n dont think that particular hospital centre does that, although the hospital itself will do.

Anyway, I’m going to give BCC helpline a ring on Monday, n thanks for the suggestion Jo! xxx

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Hi Shelley,

I have just read your thread and am sending you a good old cyber hug (((( )))) .

I had my mastectomy in 2004, afeter being dx with DCIS, IDC,and Pagets disease. When I read what you had written, I could have written it myself- it was exactly how I felt, and I’m sure, how many of the others on here felt too.

It does take time to adjust to the change in your body shape, and its a mixture of relief (that the nasties have gone) to the practicalities of life without a breast.
I remember becoming very frustrated at the lack of “suitable” tops etc. that I could wear - everything I liked seemed to “show” what I had had done.

But as time goes by, your confidence grows, and the support you get from the wonderful women who have gone through the same thing is priceless.Unfortunately I did not discover this site until I was a good few years down the line, but I wish I had from the start.

I went on to have a prophalactice second mx and also had recon with expanders. This was a complte distaster for me and to cut a long story short, I had them removed in OCT 2008 with no more recon.

I am now completely breast free, but unfortunately where the implants were I have quite marked indents where my breasts/implants were. I have found that the bras from Amoena are just fab, really comfy and tend to hug to you really well.

The other alternative to a heavier prosthesis is to get the much lighter ones (they are inbetween a softie and standard prosthesis) and great if you have to wear only one. Unfortunately, needing to wear 2, they are not heavy enough for me to wear out because my bra rides up!

Gok did a makeover for a lady with a mx a few years ago - he had some great ideas, such as layering a pretty camisole top underneath a low neckline, and wearing bold necklaces to draw attention away.
Also, you can get a prosthesis that sticks on , and you can use body sticky tape (from most lingerie depts) to secure a lower neckline so that nothing gapes when you bend forward.

I really wish you all the best with this and I am sure that as time passes by, your confidence will start to grow with your situation.

Good luck! XXX

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Hello Happyshopper!

With every lovely reply like yours and everyone else’s I’m feeling so much better, cos I can say how I feel here, n it really helps when I get replies that say that I’m not alone in how I’m feeling.

Thanks for sharing with me about your 2nd mx and reconstruction. I’m sorry your reconstructions didnt work. My BCN says that scars etc can continue to change for quite a long while after surgery, so I hope that over time, the indents might fill out at least a little bit for you.

It’s so inspiring to hear your experiences, and all the other lovely ladies on here! I think I might choose to have a second (prophylactic mx) in the future. It’s not a huge priority of mine, and I love my job and for now, I want to get back to job/normal life after my recovery period.

It’s been a difficult few days, n the sudden mixed feelings all hit me so unexpectedly. Your suggestion of an “in-betweenie” breast form is a great idea. I’ve got the Amoena catalogue so am going to have a look in there at them - I wear their Mona bras at the moment, and agree Amoena bras are very comfy. Also, I’ll get some of the big beaded jewellery that’s around just now.

I’m going to try the body tape, but not just yet as I have sensitive skin anyway, and have developed contact eczema from the pressure dressing they put on me after I had a haemotoma removed. You should see the size of the bottle of cream they’ve given me - 500g. It expires in 2013 - think there’ll still be lots left by then!

Thanks for the cyber hugs - it’s luvly when so many of you put that on posts, cos I’m quite a tactile person! Some of my friends have seemed a bit nervous at first about hugging me in case they hurt me, but think they realise now it’s ok. My BCN is great with the hugs. Thinking about it, I reckon hugs are a brilliant form of post-op exercise!! Lol!

It’s been nice writing this - I’m feeling much more like myself cos of everyone’s huge support here - thank you all so much!

It’s lovely n sunny here, so hope it is where you are Happyshopper, n everyone else too!

Luv, best wishes… n BIG cyber hugs!! xxxxxxxxxxxxxxxxxx

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I love the comment about wearing a bold necklace - so simple, and yet I can see how it would be effective. I love chokers, especially the gothicy black ones with beads - what a good excuse to wear them once I’ve had my surgery! Also, wearing beautiful jewellery is a boost in itself… hmmm, now that could be a good thing to put on my christmas list this year!

I’d thought of scarves, but a necklace is even better - works well all year round, too!

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Dear Shelley,
Really pleased you’re feeling more upbeat today. Obviously some days are better than others but whatever your mood I hope you know you can always post here.

MsMolly,
Thanks for the link to Breastfree site. I just wish I’d seen it before. I’m at the stage where I’m losing confidence in my appearance and at nine months after mx I know my body has changed and is still changing… However,it’s got so bad that I needed to see my BCN last week just to show her my body to check how it looks with regard to ‘progress healing’.
The site you recommended had photographs on which I did find upsetting but did give me real confidence that I’m not doing too badly… It’s just that you never ever see anyone else’s scarring so you have nothing to compare with…
I really appreciated the link. So thanks again MsMolly.

Best wishes to everyone reading this thread.
Welsh girl x