Delayed emotional fallout

Heather K

I had a double mastectomy following DCIS diagnosis in March 2018 with direct implants. I was fine with that, but then the skin got dry gangrene on the right side and had to have the nipple removed, then the implant removed, then lost the expander as well.

Now nearly two months later I have an awful looking mess on the right side, worse than a straight mastectomy scar because the muscle has been lifted so its all lumpy and cratered, and the implant side looks and feels painful and weird as well. 

While everything was busy and I was in and out of hospital I seemed to handle things with optimism and humour, but now I just feel abandoned without any plan or support, and I feel so ugly and uncomfortable and cant stop crying. 

Why is it just hitting me now, and will I ever feel ok again? 

Kiwi Angel

U poor thing. Seems to be the case that we deal with it while it is happening but when it is all over it hits us. Sending u huge hugs xoxoox

kmakm

Hi Heather. I'm sorry you're feeling this way, how rotten.

I'm dealing with the sudden loss of momentum that the constant appointments bring as well. It's relatively easy to get carried along, buoyed even, by the feelings of care, concern and action that they bring. When they're gone I think they leave a space that gets filled by 'thoughts'... And as we know, sometimes our thoughts get the better of us!

From very early on I knew this post active treatment time was going to be a big challenge for me. I sought counselling early on in my BC event (I won't use the j word) and my psych said that 50% of women diagnosed with breast cancer will experience a period of depression and that for most women it occurs when active treatment has finished. If you haven't had any, perhaps now would be a good time to think about a session or two? Especially as you have had such a disappointment. What rotten luck, I'm so sorry.  I see a community based psychologist who specialises in treating breast cancer women, there's nothing she hasn't heard, so it doesn't cost me much at all ($12.40!) and I don't need a mental health plan. Perhaps speak to your Breastcare nurse to see if she can recommend someone, or your GP. You can always call the BCNA helpline too, those ladies are excellent. 1800 500 258.

I have to be patient as I am still very much in a physical recovery phase from my BMX & recon, but once that's done I've booked myself in for an oncology exercise physiology course to start working on my fitness. I've got a number of other plans, new things I want to try, old pursuits I want to reignite, in an effort to make my new normal a reality. I don't want to drift back to the stress ridden pre-BC me. Whenever I have an idea I jot it down on a list in my phone.

Have a good cry and let it all out. Remember that you are not your chest or your scars. When you're strong enough, go get some second opinions and see what can be done to improve things. Hang in there. Big bear hug, K xox

Zoffiel

Heather, I feel for you. To have your surgery go wrong is a nightmare and it is no surprise that you are miserable. These things carry risks, but I don't think we ever consider that it will be us who will be on the sharp end. We worry about anesthetics and pain and scars--it never really occurs that the whole thing will go pear shaped. I had the same surgery in late 2006 and had all manner of problems--thankfully not exactly the same as you--but it was stressful and disappointing none the less.

It's easier to 'cope' while you are busy and everyone is trying to sort the mess out. It is very much different when you get to the 'that's the best we can do' stage.

Does it get better? Hard to say. It certainly stops being the first thing you think about in the morning, and the last thing you think about at night. I still hate the bathroom mirror and have become adept at avoiding my naked reflection. The irony is that there is nothing like a bigger disaster to distract you from the last one; let's just hope you stop crying and find something that is a pleasant distraction--that works best for me. Marg xxx

Beryl C.

I experienced what I call the 'let down' following the diagnosis, operation and initial treatment sessions during which time I felt caught up in the current and as though someone else was negotiating the white water for me. I realised something wasn't quite right when I felt more normal and steady during appointments and when having treatment. I had six appointments with a Breast Centre psychologist at my hospital and that helped me understand what was happening, eg, there will always be ups and downs and learning to both allow and deal with the downs is important. Blocking them out will inevitably make them worse. The reality is that your procedures did go pear shaped. I agree with Zoffie 'lDoes it get better? Hard to say. It certainly stops being the first
thing you think about in the morning, and the last thing you think about
at night.' Keep posting, BCNA offers a safe forum to say whatever you need to say. Beryl x.

Brenda5

Give yourself a break, March wasn't very long ago at all. You need some healing time and you want it healed good and proper. Take the time to look after yourself and enjoy just being alive. Plenty of good times ahead for you but for now, pace yourself. Hugz

MoiraC

Dear @heatherK-so sorry you are feeling so low right now but as others have said there is much to come to terms with. It also sounds like you have some questions about your scarring and a lack of a clear treatment plan. Would it be worth making contact with a breast care nurse at your hospital or if not call BCNA and talk to one of the breast nurses who could suggest some options for you? You dont have to do this alone.Sending you all best wishes

primek

I think what you are experiencing is perfectly normal given what has happened . As others have pointed out March wasn't long ago and you  were just sitting in survival mode at that  time and praying  you would heal. Well thankfully you have. Physically. But mentally you have only just begun to acknowledge your loss if your breasts never mind your current disfigurement.

I agree that looking at a new appointment to discuss your options is paramount. Your last surgeries were not around asthetics but just ridding the necrosed area. Just wondering why they removed the implant...was there not enough skin coverage at the time? Has enough time gone by where a tissue expander be considered and start the process again, given your remaining skin now has adequate blood supply? These are all appropriate questions. A nipple tattoo can be considered much later once that part is sorted if they have concerns of creating a new nipple. 

A counsellor may also be helpful but I think currently you need to really know "Is this it?..or can things be looked at again or the future? ". After that discussion you can begin to process things and accept what you can. Kath x