Feeling down and thinking about harming myself

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I’ve tried to talk to my breast cancer team but I’m getting nowhere. I have ME and fibromyalgia and other conditions as well as cancer and the hospital is not following NICE guidance on Multimorbidity although I have drawn it to their attention. This has led to other conditions flaring and their choice of cancer treatment - I explained what I wanted but they didn’t listen - has left me unable to do the few social activities I could manage. I care for two family members and am now stuck in caring for them pretty much all the time and unable to escape the stress, I previously did yoga outside of the home - like many people with ME, fibromyalgia and suspected autism (NHS initial tests are positive), I can only cope in certain environments which limited my social life. A yoga studio is one of the places I can usually manage but can no longer due to one huge breast and one lumpy scar with a huge dog ear and excess skin folds. Any sort of bra chafes massively. Any sort of bra top twists. Any soft of bra I can wear since surgery is too big in the band and too small in the cup to support properly. So I can’t wear my close fitting yoga gear any more as it looks ridiculous and no longer fits properly.

. I have gone through my medical notes which came from the hospital and the information I handed in on ME and fibromyalgia is there but comments on my notes show that it has not been taken seriously/understood. I apparently declined a PICC line (and thus got damaged veins) because it was 'inconvenient'; I explained about PEM (post exertions malaise, a key feature in ME and classed as diagnostic by NICE) due to an extra trip to the hospital each week to get it cleaned and my need to have hot Epsom salt spa baths for my ME, fibromyalgia and arthritic pain which wouldn't have been allowed. I also expressed concerns about having dressings on in the same place for several months due to previous reactions to dressings

Apparently, '‘ She has been fitted with a prosthesis but is struggling to wear this due to poor fitment of bra, asymmetry of breast/prosthesis and skin irritation which occurs due to her fibromyalgia’. I cannot wear a big, heavy lump that rubs on my fibromyalgia tender points and prior to surgery, marked them on me in ink and took a picture and showed it to staff. I even handed in a copy! Not skin irritation but severe pain. Putting on moisturiser won't make it better. Any decent fibromyalgia site mentions chest pain, breast pain....

Gaslighting, gaslighting, gaslighting ... trying to find an organisation that will fight my case. Fibromyalgia support doesn't deal with issues post breast cancer, breast cancer support organisations don't understand fibromyalgia.

I want to do yoga, go on holiday ... but can't with clothing not fitting properly and chafing as I move. As we are both disabled and my husband, due to his brain injury, is very vulnerable, we can only really go on a cruise holiday (I know he is on the ship somewhere and I can go to a show etc without worrying ) but that means dressing up in the evenings (I’ve got the ball gowns, cocktail dresses, etc) and swimwear and sport wear (I have previously done yoga every sea day). With a dreadful scar with huge dog ear and no decent bra or prosthesis, all I can wear are baggy jumpers with jeans or leggings.

i am so unhappy and upset at the hospital that I fantasise about stabbing myself in front of hospital staff or jumping off the car park there. i told the hospital that I would accept anything except SMX - but they wouldn’t offer me anything else and despite arguments, I was getting nowhere and eventually signed after an appointment and letter

‘Neither myself nor our Multidisciplinary Team Meeting felt it prudent to offer you immediate breast reconstruction and it should be ideal for you to have a simple mastectomy and axillary node clearance with delayed reconstruction for symmetry purpose at a later date’….’ I felt that these are the things that we can address once you have gone through your basic cancer surgery and have recovered fully from it so that we can address delayed reconstruction to address your symmetrisation’. So as soon as I recovered, I asked for symmetrisation and got told that I had to be cancer free for at least two years first. They would not even put me on the waiting list which is anyway 2-3 years.

i have high risk of recurrence and want to live now and go on holiday and do things - but at NHS pace, will be dead first. I had tried to explain about ME and fibromyalgia and had expressed my fear about not coping with a prosthesis and big bra but had been dismissed - in fact, the doctor walked out when I tried to explain and I had to get another appointment and be prepared to listen! To him. It was made very clear that I had to play his game or would get nothing.

I begged for different treatment on health grounds and was dismissed with comments such as 'not to your liking' and 'clothing choices cannot influence clinical decisions'. I have been left with a F cup and no bra or prosthesis and constant back, neck and shoulder pain as the hospital refused to take into consideration my ME and fibromyalgia and sensory sensitivities prior to surgery. They are saying that I don't like what I have been offered and they have never met anyone so sensitive to touch and that they have tried to help and now I have to sort myself out. They don't accept that they HURT me. I cannot bear the feel of what they have offered. There is very little choice of bras or prostheses - same few materials and designs, all intolerable. They coerced and tricked me into surgery.

i am in huge distress, permanently uncomfortable at the very least. I have been unable to find a mastectomy bra that fits properly - they all dig in in front of the arm as I have little fullness on top and are all too small where I have a lot of fullness at the bottom outer edge of my breast. A normal 34 F fits my cup but flesh spills out over the back and sides. A 36 E is too big. Any full cup bra digs in unless it is soft, stretchy lace. The only style of bra that fits me properly is an underwired plunge bra as they push my flesh forwards and upwards and give support where it it needed, but it won’t work with an empty cup.

light foam is at a higher level than my natural breast that hangs down. My mastectomy side has been pulled up so high that the underbust area is 3cm higher than the other side. No bra will sit right -the hospital said I needed a heavy prosthesis to weigh my bra down but the pain is intolerable. They have not offered me anything suitable for a fibromyalgia sufferer.

i need an organisation that understands both breast cancer/mastectomy requirements and ME and fibromyalgia pain. I have bought and returned over 50 bras and tried on many more. I have had 7 fittings. I have kept a few front zip soft ones size large but they don’t provide adequate breast support and are all too big in the band, really intended for up to about a D cup. The front ehere the zip is bends and looks strange under clothes and comes up so high that I cannot wear my normal blouses or v neck T shirts. Don’t send me links to bras that don’t fit me - just because it is comfy for you doesn’t mean that I can wear it. Nothing that has separation at the front sits properly as my breasts were so close together so the top swings out putting pressure on the shoulder straps. Wide under bands are uncomfortable for me as they get damp my natural breast side within half an hour and stink by the end of the day. They also ruck up

And tend to turn under. It’s my unique shape. All the features of mastectomy suitable bras are the features I would usually avoid in a bra due to my shape and my fibromyalgia.

it’s pointless getting a mastectomy bra anyway as I don’t have a prosthesis - I have tried and returned some as I was in agony within an hour.

my social life is over. I have all the following symptoms and no, I cannot take SSRIs or SNRIs as I have already tried them for fibromyalgia pain and was so ill I couldn’t even keep water down.

feeling low in mood or sad most of the time

losing interest in things you used to enjoy, like your hobbies or social life

•changes in sleeping, eating or concentration

feeling helpless or vulnerable

problems starting or finishing tasks

•thinking about self-harm or suicide.

I honestly think that symmetrisation surgery to allow me to wear normal clothes, have a proper bra and be able to return to my usual activities, would make me feel much better. I have hypersensitivities so am very limited in where I can go. I’m disabled and cannot ‘go for a walk’. I have lost what was left that I liked of my life. But NHS will not help me.

i need to know how/where I can get treated, preferably some sort of reduction plus reconstruction or scar tidying so that I look normal and have a choice of clothes. I’ve had radiotherapy and been told that I can’t have implants, only possibly a DIEP. I’ve heard of a technique by Maria Popa in Australia but cannot find the details of anybody who offers it in UK. Any help re cheaper private clinic or procedures on offer in Birmingham, West Midlands, or not too far away, would be appreciated.

my scar, according to the doctor

‘Grade 3 ptotic right breast with nipple to notch distance of 26 cms…. Left mastectomy scar…some excess folds of skin and a dog ear laterally. She has moderate excess tissue on her back’.

WhatHappened over 2 years ago

Owww dear Badbunny you are going through it. Well you have come to the right place - we are all going through things one way or another and thankfully between us all we manage to find a way to pull ourselves up and remember.... life could be a lot worse - sometimes this is one of the thoughts that get us through. Along with knowing we have family or husband/wife/partner that can help when others aren't so fortunate.... or are they.

I am glad you have found this site, its a place none of us wanted to come to however, we are here and the people here are truly amazing, their knowledge and strength is amazing.

I can't answer you 'as such' however, I can say things from my side and comment on your post ..... the biggest one is you saying.....

"I want to live now and go on holiday and do things" and "I want to do yoga, go on holiday ... but can't with clothing not fitting properly and chafing as I move" ..... if only you know how this sounds.... my immediate thoughts are 'go on holiday' don't worry about your clothing - find a way to ease the chaffing be it larger clothes, talcum powder, pads..... there will be a way, just get yourself away for a few days at a time, ignore anyone else - do this for you (and hubby).

I want to go on holiday but have a 20 years young cat and an ageing dog - thats my problem, so I do as best I can. My last holiday was some 9+years ago. To others the solution might be simple, to me it isn't - just like you say about clothing.

The scaring will change, our bodies are constantly working on us inside, I can't begin to know how you feel, I can compare to how I felt and I couldn't look at myself for many months - even now I go days without brushing my hair and many other things (I best not write them as the ladies from the 'AWAKE' thread won't let me back in.

You mention a prosthesis - could you not have one made and then cover this with a material yourself, or make one for yourself - in reality no one other than hubby will be seeing this, so long as you make it comfortable this would help you.

I feel so sorry that you feel the hospital 'tricked' you into having your surgery - surely they guided you into having surgery that potentially could save your life - not to trick you, there is no benefit to them at all.

You mention going to the hospital and visualise stabbing yourself or jumping off the car park...... what would this do, it really would not effect the staff and hospital team - it wouldn't say to them it was anything they had done - it would be that you was not in the right mind with all that is going on ....... Just from your post I can see you have so much to live for, so very much, you might not feel like it at the moment and my answer to this is you are grieving - grieving for the person, lady, girl you was 'before' all this - once you got total about your condition you lost that person - she was gone and you were left in her place not knowing what to do especially with so many other conditions.

You have come so far - I think now you need to work out what you want, really want, and go from here a day at a time, one step at a time.

I'll just add about the bra's I reckon every 'larger' lady on here as had the same problem - I am sitting here typing this reply to you with my back hurting due to my 'support bra' - yes its supporting the front but aching my back, I have others that cause the same soreness underneath, the zip up sports/support bras are lovely but do look bulky under clothing and fit terrible around my neck - but..... it is what it is - we just have to get on with it.....

Vest tops..... I'd give anything to wear vest tops.... I can't ..... I'm too overweight - so I work around it. I've never been to a ball or worn a ballgown nor a cocktail dress ..... so you see from where I am you have got so much going on for you - just take time to grieve and work out a plan forward.

Get your cruise booked - plan out if you want further surgery and look into all options and place that do what you want - you have come so far don't be so hard on yourself.

(It's late and every time I read your post back I see parts that I hadn't seen before, so I hope some of my reply will help you in some way - or at least help you feel you are normal and not alone, just one step at a time).

Thats me, I'm off to bed, oww and if you can't sleep or want a chat look out for the 'AWAKE' thread - we all pop in and out of there, we laugh, cry, ask serious questions, ask silly questions, support each other - you name it - it goes on in there.

Below is a link to the thread....

https://community.macmillan.org.uk/cancer_types/breast-cancer-forum/f/general/128753/awake/1851028

owww and your symptoms ..... I all of them except the last one - and as for 'starting' tasks .... don't even get me on this one

I'm hoping this makes sense - only my mind says one thing and my fingers type whatever they like x

Londonmumof2 over 2 years ago

I'm sorry it's been so hard being heard through this treatment (trauma?)

. I'm getting ready for work, but must agree that many here have issues with bras and prosthetics. In almost 4 years out and yet to find a perfect bra. Most of the time I wear an Asda post surgery one (the stretchy one) and can't wear the hospital issued prosthetic. I wear a Been-a-boob, which is soft but filled with little round beads for weight.

l think that non- urgent care has really taken a hammering, and I've found going through my doctor often faster than the consultant since ccovid.x

“Remember to look up at the stars and not down at your feet. Stephen Hawking,

Londonmumof2 over 2 years ago in reply to Londonmumof2

Sorry, quick phone typing and can't edit it!

Please can you speak to your macmillan centre about mental health support- they got me a therapist really quickly when diagnosed as I had a teenage daughter with mental health issues who relied on me. Also consider a formal complaint and request comments on your record are amended/ corrected. They will consider your needs more closely if they have seen shown to have ignored them in the past. X

“Remember to look up at the stars and not down at your feet. Stephen Hawking,

Ochno over 2 years ago in reply to WhatHappened

I love your response to this. I’m being treated in Spain and here you get the minimum of clinical care, none of the add ons which could so make it a a better experience. Clinically good, fluffy stuff they could do much better. It’s my choice to llive here and appreciate that when times are tough then all the nice to haves may not practical or even possible. At the end of the day, I realise I am one of thousands of women in Spain undergoing breast cancer treatment and that some things I need to take personal responsibility for. Resources are limited and not everyone is going to be 100% happy.. I’ve been yogaing since the day after my op, it’s been my “thing” to stay on top of my feelings and mental health. I’ve not felt the need to join in classes, I can do what I need to do in my pjs. I’ve reached out to my teachers and they’ve been very supportive. Tailored Zoom or YouTube classes could be one avenue to pursue.

Big Foot over 2 years ago

Hello Badbunny,

I get a sense of how overwhelmed you might be feeling, how difficult it is to get life moving forward.

I am still recovering from a mastectomy and waiting to start some tablets with Oncology.

I feel like the 'rug has been pulled out from under me'

It's hard to pick yourself up and get going - I find it it difficult.

You mentioned thinking about suicide or self harm, have you thought about getting support from local mental health services (not medication) but for support with how your feeling at the moment. Although as mentioned McMillan will have some counselling they can offer.

I also really miss yoga, hopefully will go back once I'm more recovered.

Wishing you all best in your recovery.

Badbunny over 2 years ago in reply to Big Foot

Thanks. My yoga is about the only time I get to myself/chance to get out of the house as I am a carer. It was practically my only social activity. I have had my 6 sessions of counselling through Macmillan plus other counselling and I don’t feel any different. I have contacted the hospital and they ‘supported’ me by giving me a bigger, heavier prosthesis that I returned! They don’t get fibromyalgia or ME and are not making allowances. I’ve got nowhere through PALS.

Badbunny over 2 years ago in reply to Ochno

So I’m stuck in the house 24/7 except for doing a bit of food shopping from time to time if I do my yoga at home. It was my time for myself. I have to move furniture to do yoga by Zoom, even when I’ve tried I am constantly readjusting any bra which chafes me and the doorbell is still ringing for me to take in parcels for my neighbours as the delivery driver can see I am at home and my husband is still calling for me as I am his carer. My only chance to get a break is to go out. The yoga studio was my safe space. I cannot deal with crowds, noise, flickering fluorescents,etc. People I know, people of my age, mostly work during the daytime. I am too young to go to a pensioners’ club.

BluebirdxKaren over 2 years ago

Hang in there! You have so much going on in your world. Sometimes it helps just to get this stuff out of your brain and onto a virtual piece of paper. It might help to focus on things that are within your control, however small they are. Do you have family you can call on to support you? Use whatever help you have available to you to give you some space to take care of yourself and know there are hundreds of ladies on this forum you can use to sound off to.

So sorry to hear that you are in such a desperate situation. Sending you love & healing thoughts xx

moomy over 2 years ago in reply to Badbunny

Oh dear, Badbunny , you’ve got a huge amount going on in your life, my heartfelt sympathies!

One thing that does spring to mind, please ask your team for a second opinion, preferably from a decent sized hospital who should ‘get’ your mixed problems and hopefully be able to help and see a way through to a better quality of life for you. It is your right, it might not be available soon, but a good chat with your GP might help guide you to a better team able to help.

Sending hugs xxx

Moomy

FormerMember over 2 years ago

My heart goes out to you. I hope writing it down helped a little? Life really does test us and you have been a HERO to cope as long and as well as you have. I wish I could come up with a fantastic suggestion that would change everything but I can’t. All I can do is to say, grit your teeth and know that you must never give in. You are not alone…sending love and prayers to help you through xxxx

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