You don’t always see the pain people feel.

I am a person that googles A LOT, but I’m not sure what happened to me when I heard about my cancer diagnosis. Maybe it was the shock of it all, maybe I was in denial, or maybe I was too terrified… but I didn’t ask enough questions. I also didn’t research enough. I had no idea what I was getting myself into, I just knew we were getting rid of the cancer and that meant I needed a mastectomy. I definitely don’t think knowing more means I wouldn’t have had the surgery, it was non negotiable I know. I just wish I took the time to understand what it all meant, and the impact it would have on the rest of my life. It may have made life, post mastectomy, a little easier for me.

Ever since my mastectomy, I feel a terrible tightness in my chest. Add to that a hot flash, and suddenly I feel like I can’t breathe. I believe people think I’m crazy because I also say that a part of my body -my chest, my right upper arm, my right underarm, the upper part of my back- is numb. I even think I’m crazy sometimes. If it’s numb, how do i feel the tightness? I kept convincing myself that it will get better with time. A year later, I typed into the google search bar “tightness in chest after a mastectomy” and decided to get some answers. The words “iron bra syndrome” appeared on my screen, I don’t know if I was relieved or not. I couldn’t believe I found the perfect words to describe what I felt, I wasn’t crazy after all. But I was also a little sad because maybe, just maybe, if it wasn’t anything I found on google, it would only be psychological and the tightness would suddenly disappear.

Anything that involves arm movement just feels different. And I actually think it always will. It will become the new normal for me one day, but for now it’s just a daily reminder of my cancer. Stretching my arms over my head, squeezing oranges to make orange juice for my kids, trying to open a jar of tomato paste, swimming, pushing the garage door open… I somehow always feel like I’m about to burst a scar open. Some of these scars can also get extremely itchy. Trying to epilate my underarms, or even just getting tickled there by the kids…. that is a feeling I am yet to be able to put into words. It’s all numb; but there is this “get this off me because it feels weird” feeling also. I really can’t explain or describe it properly. Also, the way my upper arm feels against the side of my body is just different. It all feels so unusual and uncomfortable.

Adding to my ignorance, it is only after my surgery that I found out there are actually many different types of reconstructions you could have. I am still in the process of researching it all, because after the many articles I’ve seen about silicone implants and cancer recently, I may consider yet another surgery one day, if I am convinced with any of the other reconstruction paths out there. For now, I have silicone implants. They need to come with a warning that your chest could get really cold. It’s due to a lack of fat surrounding the implants. It’s like the upper part of your body is sitting in a refrigerator sometimes!

I’m the sort of person that tries to hold back tears in public. I prefer to cry and let it out when I’m on my own. The point is, I don’t share all this looking for sympathy at all. I share this hoping to connect with someone going through a similar experience, and to help raise awareness of course. A mastectomy is not over just because the surgery is complete, it’s actually a lifetime change that you need to deal with. Most patients aren’t given anywhere near enough information when they undergo a mastectomy. A mastectomy is an ugly invasive surgery, and if I can make it a little less painful for someone, this would all be worth it.