Hi everyone
Well, my diagnosis was two and a half years ago.
During that time, i had a terrible experience with a tissue expander breast reconstruction which was performed very poorly by an inexperienced surgeon. As a result, last summer my skin split and my then implant began to push through.
To cut a long story short, i have taken my case to a solicitor who is investigating.
In the mean time, i found a new surgeon totally out of area who agreed to put me right with a whole new recon (he is also supporting my legal case as he was shocked at what had been done to me!)
It was completed last week (minus the nipple) but he warned me from the outset that the final result would not be as good as expected because of the poor workmanship that had gone on before.
While i was walking about with an open wound last year, i was very angry and upset, particularly as the then surgeon did not accept that mistakes had been made.
Having a good reconstruction after a full mastectomy at 38 was so important to me and i feel let down.
Now when i look at the scarring which would not have been necessary if the previous surgeon had not got his hands on me, i still feel very angry,bitter and frustrated.
I think some counseling may be beneficial, but not sure how to go about it.
So sorry to hear about the traumatic time you have been through with your recon and good that you have got the physical side of things sorted out (or at least on the way to being something you can accept).
Would it be worthwhile contacting your local BCN to see if there is a psychologist attached to their team? I had 3 sessions with a psychologist who works in oncology after my stage IV diagnosis which I found very helpful.
I think places like Maggie’s centres may also have access to counsellors. What area of the country are you based in?
I think some sort of forum where you can express your anger and frustration seems like a really good idea. Hopefully there will be a few more ideas coming your way from the fab women on this forum soon.
Hi Laurie
Thanks for your reply.
I am in Cheshire at the moment.
I am reluctant to speak to my BCN as she knew i made a complaint against the hospital and when i was called in to meet with the surgeon to discuss what had happened, she was not there. Neither did she ask how i was feeling about the fact that i had a gaping wound in my chest for a month and would not be able to get it fixed until funding was approved for the new pct.
I was almost in a position where the existing surgeon was going to take out the implant and perform another type of recon which he also knew nothing about!
As it was, he did not even place the implant correctly - so how he was going to do anything more complicated i dread to think!
Feel free to call the helpline for further support and information on 0808 800 6000, the lines are open weekdays 9-5 and Sat 9-2, it may help to talk through the difficulties you are experiencing
The MacMillan centres provide free counselling and also your Gp should be able to refer you, or you can refer yourself to a local “Steps to Wellbeing” centre. They provide counselling and other types of therapy. There are also other local cancer services too usually,just try going on line and put in cancer, your area and counselling and see what comes up
Naz, I meet up with an assortment of other BC ladies once a month and it’s brilliant (a bit of “me” time as well as some superb support) and I also see a counsellor once a week, not referred for the cancer stuff but counselling helps you to tackle all of it, not just a single aspect of life.
I’m sure the helpline will be able to point you in the right direction if you don’t feel able to speak to your BCN. Alternatively is there a hospice local to you who would be able to point you in the direction of a local support group?
Meantime, have a few more virtual hugs, sounds like you deserve a few. If you don’t need them right now, tuck them behind your ear to save for later.
So sorry to hear your story.I’ve been lucky to have support of a psychologist through my treatment…this was accessed via the BCN so I can see it could a bit difficult for you. I think all teaching hospitals would have big enough oncology services to include psychology.
Arrangements are different in each area but I would think most areas also have a Macmillan cancer care team which will probably include counselling expertise. If you check the hospital website it should have a link to the local Macmillan team.
I’d also have thought that the PCT would want to help you to get any necessary support to help you through this time and i guess your GP would be the referral route. However, if this isnt happening, A good litigation lawyer might be able to help to negotiate this for you, since i can see local health providers might have conflicts of interest especially if you live in a rural area where you have limited choice of service.
Just in case anyone’s trying to ‘put on a brave face’, that’s not always the best solution. Sometimes when you try to put on that face, lock all the craziness up in a box and behave like a normal human being to anyone and everyone you come across, it’s like putting on a very heavy weight on a pressure cooker. Sooner or later if you don’t let go of it somehow, the pressure just builds up too much and the whole thing explodes.
Naz, if you can get someone to talk things over with, you’ll be in a much better place.
Naz even though the Bcn is aware you made a complaint this won’t affect your future treatment. It islokely she is not allowed to comment on that particular issue (for a you know she is maybe in agreement with you anyway) as often it’s a trust wide policy not to discuss with a solicitor present if it’s gone down that route.
If you don’t get on with her there might be another Bcn you could see. Most onlcolgy units have psychology and counselling services. I saw a psychologist about 8 months after my first diagnosis for a few sessions and then another one after my second diagnosis and yet another last year when I was trying to make my mind up about risk reducing mastectomies.
I find talking really helps me and I don’t just stick to breast cancer issue I basically do the whole life story and it has helped me get my head around things no end.
I also go to a young women cancer support group at Maggies centre. Was there today infact. It’s on every month I find it really does help to discuss your experiences with people going through the same things and how they cooed with things.
I also organise the ediburgh breast buddy lunches which is an informal meeting once a month for ladies in south east scotland and anybody else wanting to join us from further afield. Again we can all share our experiences that sometimes freinds and family just can’t understand. Who else can you bore the pants off about bc for hours on end!
You never know there may be somebody who has been through a similar experience with regards to the poor cosmesis of your surgery. Glad your new surgeon is on the case and fingers crossed you will be happy with the results.
Hi Naz, I’m on the waiting list to see a pychologist and my consultant referred me. I had MX/reconstruction and I’m still walking round with open wound 18 wks later following long infection. Wonder if I picked it up in hospital but too long ago to find out anything. Good luck with everything. I don’t feel as if I’m depressed but I’m getting weepy and I felt isolated the last few months till I joined the forum. Like some of the other ladies I’ve also got other issues too I need to discuss.
Hi everyone
Thanks for all your thoughts.
I am not sure what it is i need to get off my chest really.
It certainly relates to losing the old me (in that is breast loss and s/e’s of tamoxifin).
Then there is my anger at my recon disaster, and adjusting to a new one which does nothing other that sit like an orange (i feel so so guilty for even saying this as my new surgeon did his upmost to try and deliver me an improves result!)
Then the fear of recurrance if i do no take tamox.
I don’t know why it is all coming out now…i has been 2 yrs and 3 mths since dx, what is going on?
p.s Choccie, i am scared of being that pressure cooker weight you know.
I don’t want to explode, i want to move on. But i am guilty as sin of doing the ‘brave face’ thing.
Today i hate my new chest - what am i going to do???
Counselling doesn’t have to have a structure and a plan and a “this is what we’re going to talk about this week” feel. When I go, it usually starts with “Hello” and then we go from there. My poor counsellor has seen as many different versions of me as we’ve had sessions! And we talk about all sorts of things, not just the one thing that started the counselling process.
One thing though, if you find you don’t gel with the first counsellor you see, feel free to say so, and see someone else. Just as in life you can’t expect to get on with everyone you meet, you might not find the first person you see is someone you’re comfortable with, so try someone else. They really won’t mind, and in fact will ask you after a couple of sessions whether you feel it’s working for you.
Hi there, I had counselling after I finished Herceptin back in 2008 as I had all sorts of issues, not just relating to the cancer, but to the fact I felt very let down by my elder sister (long story, but I felt very abandoned by her and it threw up all sorts of childhood stuff). My oncology clinic had a psychologist attached to it, but my GP refused to refer, so my oncologist overruled him. It really helped, and they psychologist just lets you talk about anything. I was then given things to think about working on before the next session and advised how I should go about it.
I found it calmed me down a lot and stopped me having panic attacks. I was also eventually able to deal with all the stuff going on in my head re my sister. It took a while, but I eventually learned to get my confidence back.
SS60, you should be able to ask your BCN in the first instance if she knows what the provisions are in your local area. Some hospitals have support centres associated with them, or even on premises, others will know who the right people are to speak to. One way or another, your BCN is a good start.
Did I say this already? I had a 3-week break over Christmas and New Year from talking to my counsellor and really noticed the lack of speaking to her. I also found that there has been lots of stuff from way back that has come up (as well as current family problems) but my lovely lady is great, and helps me hold onto reality.
CM,sounds like you have had the experience as me - I found being in this situation with cancer dredged up all sorts from the past that had been buried for years. I read a book that went into this by Jon Kabat-Zinn, the psychologist who does all the meditation stuff. His theory is we are born with an invisible canvas bag attached and we dump things in it from an early age - things like being told we’re not good at things, confidence things, family issues etc. By the time we get to adulthood it’s about 20 feet long and we are dragging it behind us, but we are too scared to look in the bag so we just suppress everything. He advises letting things out of the bag one at a time.
I read this book after I had counselling and it made sense out of all the nonsense that was going on in my head. I find I now lead a much calmer life and I don’t let things bother me so much. When things get to me I refer back to this.