Small changes causing big emotions

An email pops up on my phone one afternoon.

“Yes, we’d very much like to use your after picture at the breast surgery ward. We just need to figure out the details. When can you come by to get the slip for the photo studio?”

I felt like screaming. So excited. Small that they may seem, changes to the system can be made. My perseverance is paying of. Two months ago I contacted a nurse at the hospital ward for breast surgery. She had originally contacted me in September to ask if I wanted to make a presentation at a yearly breast cancer congress at Skejby near Aarhus, to talk about the patient perspective of not reconstructing after a mastectomy. Since she had already shown interest in my choice of not reconstructing I thought she would be an ideal person to ask if they were interested in an after picture of my flat reconstruction to show coming patients as an alternative to the plastic surgery reconstruction pictures. And now they had said yes to this. We discussed some details about when and where the picture should be offered to be shown to future patients and they were very much interested in my viewpoints and perspectives which I really think was sympathetic. We agreed for me to come by the ward a few weeks later when I was there for my triweekly shot.

The day arrived. It’s been more than a year ago since I entered these buildings for the first time. I must admit it was a whole lot more emotional than I had anticipated to go up to that same 10th floor as I had done many times before. My heart started to race and some tears were even pressing on whilst going up that elevator to get the slip. Even though this time I was here because of something good, something I myself have pushed for, to be back invariably brought back a lot of memories. Memories of anxiously waiting for results in that waiting hall, getting awful responses time after time, not to mention the surgery itself; it all blurred before my eyes when I got out of the elevator. I went over to the receptionist, got the slip and then just stood there for a few minutes taking it in. Everything was calm on the 10th floor but on the inside I felt turmoil. I felt like cheering, the moment felt grand, but that surely would have looked weird. So I just stood there. I then went down the elevator, taking two seconds mustering enough energy after the ordeal of getting the slip to knock on the door of the photographer. There were some misunderstandings in the beginning, the slip was not filled in correctly, so she had to help out. “You’ll be having surgery tomorrow?” “No, I already had surgery.”

“So this is a one year control?” I tried to explain that this was a “show” picture and something I had asked for, so that’s why there probably wasn’t a procedure for this. “Oh, it’s the one year control picture” she proclaimed. I tried again to explain that this would be an example of flat reconstruction and that it was my initiative. “Please take down your panties a little lower. We need that if you’re going to have a reconstruction later.” “I won’t!!” I muttered. In the end I think she got it and explained that there needed to be written consent to use the pictures, she knew the process from the plastic surgery part, but this would still be unknown territory for the general surgeons. There are no standards for showing pictures of flat reconstructions. I do have plans to talk about this in my presentation at the breast cancer conference that is in two months from now. Just because you don’t go for reconstruction you still want a pretty result and moreover you want to have some idea what you’ll look like after the surgery. If we go through so much strain to reconstruct and pay so much attention to the result there, surely there can also be put an effort into flat reconstruction.

I stress this a lot, I’m not trying to preach that flat reconstruction is the only right choice. But time and time again I see women struggling with the reconstruction. People writing me that they are going to have surgery no 13! They keep on getting infections, wounds that open up spontaneously, implant looking weird, rotating, capsuling. And when reconstruction goes wrong people say breast cancer sucks. Well I’m sorry to say, reconstruction is NOT breast cancer. Breast cancer sucks for many other reasons, TNB, stage4, chemotherapy and many, many more things, but the reconstruction is a societal norm that has got nothing to do with the illness itself. It doesn’t cure cancer. I really, really wish we could change this norm or at least not make it the default choice to reconstruct. Making the choice more visible will make it easier to take an informed decision. This is what I’m pushing for and that’s why I keep on showing my scar, both on social media and on the breast surgery ward. I want this choice to become more accessible for everyone and I do think these little small changes can have an impact.