"It's like having 'ghost' breasts". 9 things I didn't expect from my elective mastectomy.

In September last year, I wrote about my experience of having an elective mastectomy, after losing my mum to breast cancer.

I wrote about how afterwards I felt exhausted, alone, relieved to not have cancer hanging over me and grateful.

While you're here, watch an 8-year-old diagnosed with a rare form of Breast Cancer. Post continues after video.

Video via GMA.

It's been a journey, and I am honestly learning new things constantly.

Here are nine things about my mastectomy that I'd love for you to know:

1. Tissue Expanders HURT!

A tissue expander is inserted under the skin and muscle and over the rib cage to replace the removed tissue. They were slowly filled, over time, with saline, via a needle, which goes into a port, until I was happy with the size. Tissue expanders have hard edges that dig in; they feel incredibly foreign to the body and uncomfortable. They then hurt again when filled because you've introduced more volume into the space. As soon as I could get them out, I did. I cannot express just how "clunky" they felt; they were horrible to sleep with too, and I could feel the port just under my skin. 

2. The muscle under or over the implants is an option.

For my expanders, the muscle sat over them. I felt like Arnold Schwarzenegger because I could move my muscles like a bodybuilder. I'm not about that life. My surgeon called them "animated"; I called them awful. When we discussed putting in the implants, I was determined that we place the muscle back over the ribs so that it was skin and then implants. Luckily my skin wasn't too thin, so my surgeon said I had that choice available.

3. I have no sensation over my chest.

Well, no feeling at the top. I can feel the implants; I can feel underneath, but over my skin, nothing. My implants are always cold because there is no blood supply to them. You could literally stab me in the chest, and I wouldn't feel it. When my expanders were being expanded, I didn't feel the needle going in. I'll never feel my kids resting their heads on my skin, but I can feel the pressure. It's like I have ghost breasts, there but also not.


4. Everyone was worried about my nipples, but I still couldn't care less.

I thought I'd be sadder and more emotional about the nipples when the dressings came down, but it was just part of the process. I cried like a baby when I saw my chest for the first time; I still remember that big cry. It's embarrassing for other people, I think. When I had to get an ECG in the hospital, I kept apologising for how they looked to the nurse and being a nurse myself; I know she wouldn't have cared. However, you still feel bad for looking so confronting. At the end of the day, I don't need to worry about wearing a bra, but I do sometimes worry that my scars might be visible.

5. Some of my scars have gone down beautifully; others haven't. 

My left breast was opened up three times, including the implant insertion. Then I had a minor superficial operation for an infection. My right breast was opened twice for the initial procedure and implant insertion. My right breast has the worse scars; go figure! They are bumpy and keloid in parts, like a broken up earthworm. If there was anything I disliked about this operation, it would be the scars. The smooth ones are fine, but the bumpy ones are horrible. I hate them, and they are awful to touch.


6. People will compare your mastectomy to a breast augmentation.

They are nothing alike. It's like saying I had my knee replaced, so that's like having a below-knee amputation. Yes, it's the same limb, but everything is different. When you have a breast augmentation, you're not doing it to stop cancer; you're not choosing if you should keep your nipples or not. The mental hurdles for a mastectomy are huge. People react and treat you in ways that go from one end of the spectrum to the other.

7. Your friendships will change, and that is ok.

I lost two friends who I thought were closer than other friends. One sent a couple of texts after my surgery, but neither discussed it much beforehand. Apart from those couple of texts, I've not had an in-depth conversation with them in the past 12 months. One of them did say they didn't know how to discuss it. Imagine how I felt, feeling like they were ignoring this most life-changing event. I still feel like my journey was a shame to them. I'm ok with it now, but at the time, it was really upsetting and added to the already incredibly emotional time I was going through.

8. I never expected so many surgeries.

In my head, I'd ticked off the initial mastectomy, plus the insertion of the implants; not the emergency surgery a few hours after the mastectomy for a massive haematoma and not the infection. Now I need fat grafts to even things up because, in some parts, it's like a just starting to deflate basketball. I never wanted big breasts, so I am happy with the size, but I also hate the pockets that dip down. I have a chunky roll of skin on my sides from where more breast tissue was removed, this looks awful, and I'm not sure what my options are with that. I've not booked in with the plastic surgeon yet, but I will.

Listen to No Filter where Mia Freedman speak to Amanda about her decision of having double mastectomy after discovering she has the breast cancer gene. Post continues after podcast.

9. The cost.

Even with private health insurance, there are out-of-pocket costs. Please, if you are looking into this, be aware. There are substantial waitlists for public patients, and it's a slow process. Private it's still very, very expensive. I haven't gone back to the surgeon because I'm dreading the cost of "cosmetic" surgery when I should just be happy. At the end of the day, look into things carefully. Take your time and seek out stories about the process from women who've gone through it. All the training and textbooks in the world are lovely, but first-hand accounts are SO valuable. 

Feature Image: Instagram @nurse.merowyn.