Tomorrow is my double exchange surgery. One thousand, one hundred and thirty three days after my first mastectomy. Finally.
Tomorrow has the weight of three years of expectation behind it.
I’m at sixes and sevens. Not sure how to feel, not sure what to expect.
Im scared. I’m scarred. My mind is scattered.
How will I look when I wake? Will I have surgical drains? How long till I can drive a car? I forgot all the details.
How long till I can hug my kids and my husband properly. Like one of those hugs where you squeeze so tight and don’t let go. Where it feels like two people might just possibly melt into one.
Will I be able to move forward from this breast cancer world I’ve been immersed in for three years and two months?
What would happen if I give myself permission to let go of this whole journey and try and forget about all this?
This will be surgery number five. It won’t be the last if I want to correct my disfigured breasts and nipples. What will come of the sixth? Will there be a seventh?
I’m a physical and mental mess today. See you on the other side of it.
“I can’t believe it’s taken so long to get to this point!” said my plastic surgeon as I entered the big smoke hospital consult room this morning.
“Oh well, I’m still alive!” I replied.
“You are awfully cheery about this.”
“Yes cheery today, but there’s been plenty of frustration too.” I sat down.
Three years ago he inserted the first tissue expander into my chest immediately after my breast surgeon completed my mastectomy.
Way back then he wore a tie with a black and white feathered pattern that matched his facial hair. Six months later, with my second mastectomy, I missed his tie because he was already in his surgical scrubs when he came to mark me up with purple texta.
He shook his head and said softly “Just ridiculous!” as he opened up my file.
He went on with some sort of attempt to explain what had transpired…”it’s all left up to the bean counters you see! Category three should take up to twelve months, but there isn’t the same consequences for not meeting category three targets that there are for say category one and two. We’ve got patients with serious disease and they should be able to live out the final years of their lives feeling as normal as possible!”
The frustration at the system is thick all round.
“Okay, So what am I going to do with you? ” He scratched his head.
I take off my shirt, roll down my tank top to my navel and sit on the bed bare chested.
I’ve done this so many times it’s like I’m just being asked to simply take a seat.
“Hmmm, can I take a photo?”
“Sure!” I replied.
He reached back to the desk and picked up his iPhone and snapped a picture of both expanders. (I wanted to write breasts, but they are nothing like breasts). I smiled as if I was posing for a headshot.
“Can I take a photo of your tie?” I asked. “I love it!”
“Thanks! I got it from Russia” he said.
The passage of time has done damage to his work. By damage he means my road train weight gain, the lack of symmetry, the capsular contraction of the first expander and the poor blood supply to the radiated side.
He starts to formulate the plan…
“I’ll need to hack away at the capsule that’s formed. I don’t want to take the front off it though cause your skin is thin. So I’ll hack away at the back of the capsule and the other scarring that has formed around the original incision sites and try and free it up the a bit. How does that sound?”
Anyone who thinks this is a cosmetic boob job is an idiot. Mastectomies and radiotherapy are no picnic. The body is left tight and sore. There is scarring and fibrosis. There are lumps and tenderness and the nerve pain and pulling are a constant reminder of the trauma of having body parts amputated. Add to that the surgical clearance of all the nodes from your armpit.
This lack of any pleasant sensation from my chest weighs me down at times. The sensations are numb and painful at the same time. How is that even possible?
“What about the 2 o’clock and the 8 o’clock nipples? Can they be moved?” I inquire.
He is straight to the point. “Look, I can’t do anything about the nipples at this stage. Better to complete the double exchange and then see what we are left with. See what we can do down the track when it all settles.”
When he suggested he could probably get 200-300 cc sized teardrop shaped implants in my chest I nearly fell off the chair. I’m happy with small ones thanks.
In the beginning I had a minuscule 142 grams of breast tissue removed. There wasn’t much put back in. The one and only time he tried to expand me he put 80mls in, but had to take 20ml out because it was just too painful.
He says he may also do some sculpting around my chest to remove some body fat that wasn’t there when all of this cancer lark began.
I wont touch your stomach though!
“Drats!” I sighed, and again we laughed.
I will see him for the big op in a few weeks. Excited … yes, but acutely aware that this might not be the moment of completeness that I hope it will be. There is a lot riding on this process. For it is as if this reconstruction operation can wipe away the struggles and somehow make me whole again. Which is no easy feat after three years feeling broken.
Imagine my surprise when I received a letter today that said “Your treating doctor requested that you be placed onto a surgical wait list to undergo BILATERAL EXCHANGE FROM EXPANDERS TO IMPLANTS”
Placed onto? What the fark???!!!!
The letter continued … “We aim to deliver the best and most timely care to all our patients as quickly as possible.”
Most timely? Quickly? Pfft.
I understand the issues with public health, I really do. But Pffft!
You see, I was PLACED on a surgical waiting list back on the 1st November 2013. True.
It’s been nearly three years since I had my first expander jammed in my chest. And 2.5 years since I met the second one. I was so appreciative of the work of my surgeons. They removed my cancer and gave me an instant chest. I went onto the surgical list a few months later. And there I have sat with these uncomfortable, lumpy, rotten things since.
For all of this time, its been too painful to lay on my stomach. So I’ve neglected visits to the chiropractor, the massage therapist, and bodyboarding with the kids.
I guess I’m supposed to feel lucky that I’m still alive and even need my reconstruction finished. There’s plenty who didn’t get this far. Plenty!
So after I mustered up enough strength to hide my disappointment at this letter and not get prematurely upset, I rang the hospital. Turns out, the lovely Elective Surgery Access Manager felt my pain and put me on hold.
When she returned to the telephone, she offered me an apology for having me wait on the phone so long. Then she gave me a Plastic Surgeon surgical consult date (I’ve had two of these already) and an implant exchange surgery date. I didn’t know what to say.
So I said “Wow! Thankyou so much!” or some similar drivel.
Now the question is, what will they look like when finished? I’ve spent so long in this body that doesn’t feel like my own anymore. My rock hard, contracted, scar effected mounds, with nipples that point in such grossly different directions will need a lot of work to look reasonable.
And what will be of the 28kgs I’ve gained through hormonal treatment and chemically induced menopause since these Asian sized expanders were inserted? At least they were in proportion when all of this cancer treatment lark started.
What I’m looking forward to most will be the delight for my children when they snuggle and discover my chest is no longer like hugging a concrete freeway bollard. That will be the best!
Happy 41st Birthday to me. It would appear I’m (actually) having exchange surgery!