Making sense of the last 3 years - head a muddle

Hi Naz
Sorry you are having such a hard time. I was diagnosed in August and had mx followed by ANC in September and started my chemo yesterday. I have a friend who has finished active treatment and is experiencing similar problems to yourself about coming to terms with what she has been through and how to move forward.
Ten years ago I was being treated for Crohns disease, a digestive problem, which after about 3 months of severe pain and extreme weightloss resulted in an operation to remove part of my bowel. Whilst in hospital I developed a pressure sore, unbeknown to me and was subsequently discharged with it. By the next day it was really painful and really deep and after calling the doctor I was re-admitted to hospital. The sore was at the base of my spine, in the crease of my bum [sorry for that but it had a massive impact on my femininity due to its local and the loss of my breast has had a similar effect]. I had a couple of operations to clear the sore, followed by 2 months in hospital until it was in a position to be treated by the District Nurse. As you may imagine I got really depressed and found it hard to see the light at the end of the tunnel. Long story short, I was off work for a year in total but it was 3 years in total before it was fully healed. During those 3 years I felt every emotion possible and felt the consequences in all areas of my life. I was angry at the initial operation being needed, furious that someone elses negligence had caused me so much more pain and further ops, and there was, in my eyes the loss of my femininity and sexuality. At that time I was single and couldn’t imagine allowing anyone to get close to me having scars I had, both physical and mental.

I too took legal action looking for justice for myself and also to prevent, hopefully, others going through the same experience I had. It was difficult to do, because as you say, it keeps the whole experience at the front of your mind while you go through the process. I have to say though that I do think it was worth it. It might just be me but it felt like I was taking back a bit of control in my life, I did feel justice had been given back to me as the hospital accepted liability and took away that feeling that it had somehow been my fault and I was assured that changes have been made to prevent it happening again. Not sure how effective the last bit has been but I feel I have done what I can to prevent it happening again. It was never about an individual person more about the system and processes followed. Hope that makes sense.

I also found it difficult to come to terms with emotionally. Whenever I tried to talk about how I felt I didn’t feel that my friends and family could fully understand. I kept getting told to put it behind me and ‘its over now, forget about it’. If I could have done that I would have! There also seemed to be a bit of change the subject conversation and in my state of mind I assumed they weren’t interested or were just fed up of me banging on about it. I dont think they could understand the impact it had all had on other areas of my life too. I just felt so down and exhausted by the whole experience. My whole life felt it was under a bit of a cloud and I really struggled to see the good or the pleasure in other things and it was always tinged by this sadness. What made it more difficult was that I am usually a strong, can-do type of person. I looked into counselling and eventually found someone to go and see. I’ve never felt the need to do this before and didn’t know what to expect.
About a year after my ordeal I decided to see a counsellor. When I did see the counsellor it was nothing like I expected. She asked me a few questions to get me talking and I spent most of the first two sessions in tears as the words just poured out. At no time was she judgemental, she didn’t offer suggestions to put things right, she just steered the conversation so that everything I was feeling came out and any ideas for moving forward came from me. I had 6 sessions in all and as they progressed I could feel I was changing. It also helped me understand that what I had been feeling was perfectly normal. All in all I felt it was right for me to see a counsellor and I would certainly do so again. Actually spoke to my BCN about it earlier in the week and she has put me on the list to see someone.
I’ve found both with the Crohns/pressure sore problem and now with my breast cancer that friends and family don’t want to see you upset so when you do start to voice your opinions about how you feel they don’t understand where the words are coming from and dont really know what to say, so you end up hearing lots of platitudes and trite phrases [‘you will be fine’, ‘at least they have caught it early’, ‘now they have found it they can sort it out’ - all well meaning but somehow so meaningless to my current state of mind]

I’ve also been told how brave I am. I don’t feel like I am, I just feel that I have to do it. Now of what I went through 10 years ago or what I am going through now has been a lifestyle choice, its been a necessity as a consequence of circumstances beyond my control. I have cried but tend to do it alone so I don’t have to hear the words ‘whats wrong’ [from my sister, while I was in hospital after my ANC - Doh!]

To answer your question, in my opinion I would recommend counselling to anyone who feels they need it. I was lucky in that I found a counsellor that worked for me, the first session was really a trial run to see if we could work together. I don’t think you will get any answerrs but what it does is give you the opportunity to rationalise your feelings, organise and voice your concerns and draw your own conclusions as to the way forward. Ten years on I’m a lot stronger than I was and during those 10 years my femininity returned, I feel I am me and I know the feelings I am going through now are normal and acceptable.

If I can help in any other way please let me know, either on here or by private message. Good luck and I hope you get stronger day by day

Shazza x

Shazza just read your post and feel as if I am doing the right thing seeking counselling.I feel guilty at times being the way I am and as you say people don’t really want to hear it all and as there are alot of other things going on with my family I don’t feel I can talk to them.I have taken everything on board and hopefully I too will be a new person soon.
Naz I am sure the post will help you too and at the end of it all you will come out a stronger if different person take care and I will let you know how I come on with counselling Janice x
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Hi Naz

Everything the others say makes sense, especially that maybe this is the right time to cope with it all. I don’t have any answers but offer this post as a cautionary tale.
I am now 4 years post dx, around 1 year post reconstuction “finish”. Like you that was a fraught and disappointing experience, especially as I had immediate reconstruction! In truth I just got fed up and I’m not really “finished” as I don’t feel that I trust any medical people enough to let them inflict any more violence on my body.
As you may have guessed I am not over mx and wonder if I ever will be. At the 1.5 year mark I saw a cancer psychologist because the BCNs manoevered me into it as they refused to accept my complaints that the painful reconstruction were the result of surgery. I went to her and was made to feel shallow for caring about how I look and complaining of pain when other people die of BC .I really found the experience of seeing the psych was as destructive emotionally as mx is physically. My distress that the recon is not a replacement breast was not grasped and the BCN told me I was ungrateful; in my case it’s a prosthesis wrapped in a back muscle and it feels like a lie. I was not allowed to say that it was not a breast by any of the medical team and I question the whole basis of the so called therapy, in essence it did not feel honest to me not to acknowledge that I HAD lost a breast. I lost so much confidence at the idea that I just needed re-programming not to think “unhelpful thoughts” and I learnt just to shut up. Eventually they accepted that the implant was encapsulated (PS said grade 4 which is high) and I underwent reconstruction of the reconsruction etc etc. At this point I was still being made to feel that I was at fault for not adapting and I really lost faith in the “Team”, especially the brain washer. Incidentally, still convinced I was somehow at fault for not coping I paid for private Counselling (2 yr mark) this has not helped because there was nothing I wanted to say - we just looked at each other, later I paid for post cancer coaching at 50 per session around the 3 yr mark as I still feel angry and stuck. That was the most difficult as she was post BC herself and something of a reinvented and improved version of her old self. Did I feel like a failure - oh yes!
Net result is I am always unhappy though I no longer show it. I can’t attend medical appointments for anything, especially not mammos or the like as have melted down at the last few appointments I attended. I don’t want to be naked or touched anymore. I have been celibate since mx. If only I could turn the clock back I would never have had mx.
I’ve completely changed and I am not me anymore. I used to be fun. I still do the same job and outwardly look like a fatter version of me, my hair is the length it was pre chemo. But I feel like a fraud and I can honestly say I have not enjoyed one day of my life since mx.
The caution is - do anything, everything that might help you heal but don’t accept that others know bettter than you do what will work for you. This is a horrible place to be, it’s horrible to be unhappy in the body you live in and it’s dreadful to feel let down by those you trusted.

Wishing you all health and healing.

Love Jane xx

I just wanted to say thank you all so much for continuing to reply to me.
Iwill reply in more depth tomorrow as i am feeling mentally drained from this difficult week.

Jane, i totally get syou, i really do and i feel fopr you - we are singing from the same hymm sheet when it comes to feeling towards MX and at the moment i cannot see a way forward when it comes to feeling comfortable inside my own skin - it doesn’t matter how hard i try i just cannot accet it.

Got children to deal with now, but will be back xx

Hi Naz
So sorry you’ve had such a rotten time. Of course you feel bad, only natural. The first thing to do is to be kind to your feelings and allow yourself to feel whatever you feel without reproach. My background is: I was diagnosed 2 yrs back and had a bi-lat mx, chemo, rads, tamoxifen, plus all the usual ups and downs that entails. I dissolved in tears at my GPs and she said it would take weeks for me to se a counsellor and I had to wait in line like everyone else. Then, the next time I saw my chemo oncologist she saw how distressed I was and referred me directly to a clinical psychologist at the hospital who specialises in helping people with life altering illnesses. She has been amazing. I couldn’t have got thru with out her. Counselling is good if you just need someone to listen, but if you have stuff you need to untangle and work through I suggest a psychologist or psychotherapist.
One last thought. If you really need someone to talk to when no-one else is around, The Samaritans are there, and they are not just for people who feel suicidal, anyone who is in need can call.
It has helped me on the dark days to remember that nothing stays the same, everything passes - good days will re-appear. Take care, Naz.
Ninianne x

Thanks Ninianne , your post is much appreciated.
Last week was hell, my mind plagued with thoughts going right back to 2009 - scared the life out of me!
I feel calmer this week and have focused better on my job and children…
I know my poor recon is the root of the problems right now - i am so so angry at that surgeon i could kill him!
I am still contempalating what to re: sorting my thoughts out in my head and who may be the best person to help me with that.
I also find writing everything down on here very helpful

At the moment though i cannot see past the damm scars and have no idea how to accept the new me ?

I hate the recon! I just cant get used to it at all. When am I going to accept it is here to stay? Am I being selfish and ungrateful?

Hi NAZ ,
You are not selfish or ungrateful. You are just being realistic. I too am disappointed with my recon , so much so that I did not even bother having a nipple done as I did not think it was worth it, so that saved me from another operation ! I now buy T shirt bras which hold the recon breast in place very well and make me look fine in clothes.
I did have Counselling which really helped me. I didnt think it would , I was very sceptical but they are specially trained to ask all the right questions to help us off load, cry , sob and grieve for the breast we have lost. Yes she was excellent and along with the anti depressants I began to feel well again. She gave me the confidence I needed to find the New Me !
Please consider it Naz as I think you would benefit from it. Love and hugs Tracy xxx

Thanks Tracy
Your post has made me realise that perhaps i am not being selfish or ungrateful after all!
I still wake daily thinking - ‘god this recon is here forever’ I can’t quite believe it.
It has affected my relationship with my parter which is not great…
I just don’t know how to move on from it all - somedays i am fine and other days my head is filled with ‘stuff’
When is it just going to go? WHEN?

Hiya Naz,
It probably wont go for a while yet and you need to give yourself time for your feelings to change. Our partners and husbands find it difficult as in truth most men love breasts so it is a lot for them to get used to. I too hated the recon breast but we both gradually got used to it . We have both had several other operations so we have lots of scars in different places. I had a Spinal fusion when I was 14 and thought I would never get married etc or have children. We have one girl and she is 20. It will get better , it will just take time. So in the first instance ask for the help you deserve to feel well. Keep busy and occupied. How old are your children ? Love Tracy xxx

Thank you Tracy
Its so hard, i never thought I would feel this way so far down the line, but I think i know what has happened. Surgery has come to an end after 3 long years and I am starting to reflect on things more now.
I am grieving for my lost breast and am fighting against accepting the new body.
The anger I feel is great and i am even more angry at the surgeon who mutilated my body first time round and then denied there was a problem 2 months before my implant ruptured… He performed such a shockingly bad job on me and I haven’t forgotten!
As a consequence I have a potential legal case with the hospital trust and am waiting to see whether there is a legal case to answer or not. If not i dont know how i Will fe el and if there is I have to go through it all over again.
My children are 4.5 and 8 and keep me very busy!
I find myself feeling guilty still because I am meant to be one of the lucky ones right?
So with that in mind, what do i have to feel bad about?
I can’t help it at the moment but am so hoping it all passes soon.
Thanks for being there xx

Morning ,
Yes we are meant to be lucky but that does not mean we cant be angry , upset and disappointed. This is why talking to a trained counsellor will help. They have heard so many stories like ours before. When I discussed the affects of Tamoxifen with my Cancer Psychologist she immediately understood what I meant and comforted me through the hate I felt for that drug. I still take Tamoxifen by the way but I still hate it with a passion.
Please go to your GP and ask to be referred or ring your BCN if you trust her to help you get an appointment quicker. To be fair my Oncologist booked me in to see the psychologist because she knew from the way I was acting that I was strange. I had become a different person and now there is a new Me.
You have a good fighting spirit so you will cope with the court case if it gets that far. Just focus on your kids , they are your life and need you . They are only young so you have no choice really so today let it be the day you do something about it. You are not going to let Cancer get the better of you.
Tracy xxx

Tracy thank you so much for reassuring me that i am not going out of my mind!
Had an awful day yesterday and thought enough was enough.
We have someone attached to the organisation i work for whoose job it is to support employees and look after their well being (my job involves supporting others with what ever life brings them funnily enough!)
I told her of my dx when we spoke last and of my potential court case.
She is very good, asks the right questions and will listen. I made contact with her yesterday and we are going to speak on Monday. It feels good because she told to put all thoughts in a box until then and we will speak about how to manage them next week. A relief i think and i hope i can move forward from this now…
Told OH that i was grieving for lost breast -he said yes i am probably right and was annoyed with hospital for messing up and causing me additional stress.
if there is no case to answer i do not know how i feel feel - mortified i should imagine that that level of recon can be performed and there is no come back.


It feels much better having spoken to someone about how i am really feeling…
I am trying hard to acknowlege thoughts and deal with them as and when i need to.
I regret not having 'dealt’with things along the way, but hey ho i am doing it now!
I am going to try and see someone about my body image issues and will deal with the legal case as and when i need to.

Onwards and upwards as they say!


So so tired today.
The negligence report is due soon and I feel very apprehensive about what the outcome may be.
Had mammogram on Friday and was pulled aside because I had not received any follow up appointments since the investigation began last May.I was terrified and thought the worst! The hospital in addition to performing a shocking recon on me, have also failed to provide a duty of care and offer me any further follow ups! How is that right?
So off to my gp I go to sort out a new breast surgeon!
Feeling mentally drained and desperately need to sleep well…

Hello Naz,
I hope when you read this , that you have had a good nights sleep and that you get the strength to cope with everything that is being thrown at you at the moment. I hope too that you are letting the experts at work help you sort out the negligent claim. Stay positive , get through Christmas as best you can , then face the New Year with fresh hope and determination. You can do it Naz. You know you can !! Love Tracy xxx

Thank you Tracy
I am so upset, the report has come back unsupportive :frowning:
This means that some surgeons can get away with a pretty shocking level of surgery without being negligent!
My sufffering has been for nothing.
I now need to focus on my children and myself and put this whole god forsaken saga behind me once and for all.


Trying hard to put everything behind me now.
Have i been so selfish for wanting a decent reconstruction for so long when this dammed disease still takes so many women each year?
Have i wasted a ton of emotional energy and had sleeless nights for no reason at all?
The hospital case may be over before it even started but that does not take away the fact that i had a reconstruction which did not last a year and HAD to be done again if this was something which i wanted after MX.
I never meant to be selfish and allow it to consume so much of my head space, it just happened.

Just an update.
I have self referred for some counselling at my local hospice - i hope i don’t have to wait too long for an appt!
The last two months have been hellish - sleepless nights and feeling very angry and bitter indeed.
Stuff has been going round and round in my head - why do friends never want to talk about things which bother me,why did no one ever ask me about how i felt during my legal case (which may well have failed!) why did everyone think i was so ‘brave’ and ‘strong’ and why does everyone assume that i must be thrilled with my new body - I AM NOT!

No one wants to know because they are scared. They do not want to face their own mortality even though they probably won’t ever have to!

Anyway, i hope the counselling gives me the space to thrash out my feelings once and for all, to enable me to move on.

Good you have made the right moves today Naz to get the help you need and deserve ! This is a new year and a fresh start for you to slowly start to feel a bit different about yourself. I hope your partner is giving you the support you need and please do not feel a failure or a wuss about going for counselling. It is well worth it. I am normally a very positive, happy go lucky , vibrant woman and I became a gibbering wreck with anxiety. The Chemo sent me funny. My body craved Oestrogen and the Tamoxifen made me feel mental BUT I am better now. I never ever thought I would say that during my deepest , darkest thoughts…So Naz I hope the Counsellor you get is a good one and maybe you need an anti depressant to help you feel calmer. If you think so then visit your GP. You are in control Naz. You have made agreat start today so continue will the good work and be Mindful of everything you do. Lots of love Tracy xxx