No nerves to get on

The tape holding my wounds together was finally, permanently, taken off last week.

Underneath lay fully healed, quite red, scars. Some small, some long, some lumpy. Some hidden under new flesh. Each scar has its own character. The two circular nipple ones form the border between my old breast skin and new replacement tummy skin. There’s a drop off shelf between the two, like the indent in a saucer where the cup sits. Instead of my new breasts moving outwards to a point, they give the reverse effect. My new boobs look inward.

Scarface body

They are a work in progress of course. The surgeons expect me to have new nipples made by pulling the inside flesh, out. Then a tattoo would be added to create the effect of an areola. The thought of such things makes me shiver right now. But maybe my brain will do the childbirth trick and make me forget that surgery means pain. Not that I’ve forgotten childbirth pain, so I don’t rate the chances.

There’s a straight line scar down from both ‘nipples’ to the under-boob, like the dead body outline of murdered lollipops. These connect to the hidden scars. The second largest ones on my body. They run the length of the underside of both breasts, almost meeting in the middle where they form lumpy ends. When I’m upright, they disappear.

Moving downwards, my newly cut belly button is encircled by hard, red flesh. The belly button is basically made of scar tissue, a product of birth. So scar tissue upon scar tissue means a wiry, unyielding piece of flesh. When they moved my belly button further up, they chopped off the forest of hairy skin that it was nestled in. My ‘garden path’ to more fun areas. But yesterday I spotted a small black hair growing back. It made me smile. My hairy genes overcoming the perceived perfections that surgery imposed on my body.

Then we reach the longest scar. It runs from just above my pubic area, all the way across my body. From hip to hip. For better or worse my tummy is flat but oddly so. Not the flat of the healthy body with a curve here or an indent where a muscle lies. A constricted flat with discomfort as though the organs inside are groping outwards to search for more room.

My body is an unrecognisable configuration marked by an angry map.

This was accomplished in one day.

While I was asleep.

Of course I’m grateful. I made an informed decision to reconstruct my breasts. Time normally allows us to become used to our changing bodies. The very speed of this change brings its own unique challenges. It exists as a duality. A trauma done to my body to save my life.

And as the tape came off new opportunities to heal that trauma became possible. Now I can touch and massage my new, scarred flesh. The surgeons suggest massage as a way to break down the lumpiness you feel in new scars. You can rub away the necrotic (dead) fat cells that were left behind. There’s not that much evidence this works but it does force you to touch your new skin, to reconnect with the painful and the numb.

When I first did the massage, I felt repulsed. All the sensations were being felt through my fingers and my digits didn’t recognise my new breasts as mine. Or as breasts at all. The neural pathways laid down in my brain for ‘breasts’ still expected to find old, huge, floppy boobs. Not these muscle-firm, small, numb things with no nipples. And all my brain was thinking about was that word “necrosis“. Dead. There was no positive spin on this from my sensation-less boobs.

There is one form of sensation still real to my poor befuddled brain. It occasionally thinks I DO have nipples. At random moments I get the feeling that my non-existent nipples and areolae are contracting, fast and hard as if it’s freezing out or someone is flicking them playfully. Except there are no nipples to flick or freeze. This is a common thing. Phantom nipple affects a third of women after surgery.

So I have phantom nipples on breasts that don’t exist.

When the surgeons took the breast tissue, they removed the network of nerves that run through it. I do have a better chance of that sensation returning because my own flesh was used in the reconstruction. But with the return of nerve function could be the arrival of new pain. So it’s a mixed blessing. The breasts as a source of pleasure is most likely gone forever and the way my brain was aware of my body is a hump it’s struggling to get over.

Quality of life surveys find that women who have reconstructions are happier. It’s hard to know how happy you are when you haven’t experienced what might make you unhappy. I predicted I would struggle with going flat and I hedged against that by opting for a reconstruction. But when I read how happy I was supposed to be from reading those surveys, I felt ungrateful and dissatisfied.

Until I found this study. It broadened the definition of ‘happy’ to include; the cosmetic body, the sensed and touched body, the body in action, the sexual body, awareness and sense of self. Standard surveys only explore vaguer notions of satisfaction, quality of life and then focus in on pathological responses such as depression or anxiety. An all or nothing approach to new boobs.

What I found in this study was the acknowledgement that women will have a varied and wide set of responses to the same surgery. Especially so for those who have their own flesh used to reconstruct their bodies. Quotes from the women range from “I feel complete again” to “A breast without a nipple just isn’t a breast I guess..” The individuality of experience as unique to us as our own personalities.

When I read the survey, I let out tension I wasn’t aware I’d been holding. Like stepping into a hot bath after a bad, cold day. It’s an unknowable relief to find I’m not the only one. Not alone in my mixed feelings, my confused neurons, my struggle to accept.

Time may heal all.

For now, I’ll keep touching the nerve that isn’t there.

Don’t Rage Against the Machine

sailboatI was surfing a breast cancer forum today and was a bit overwhelmed by the amount of people crying out in anger and frustration and not being able to express that to loved ones. It made me feel sad for them and a little confused. I guess I am pretty lucky  to have such awesome Bosomers like yourselves around to listen to my every rant but I also realised I haven’t felt those particular emotions that often. I remember clearly the day I got the diagnosis and coincidentally we had booked months before to go and visit our lovely friend Karen in Scotland. The flight left a few hours after I left the breast cancer clinic and the whole journey to the airport is a bit of a blur. Once we were on the plane though, the memories are sharper. There were two young women drinking champagne and giggling a few rows in front of me and I was shouting at them in my head “Don’t you know that stuff could KILL you?” On the other row of seats in front was an older man who dared to stretch his arms in a glib, bored fashion. Didn’t he know that serious and life-threatening things were afoot? How could he be so cavalier with his body movements? A week later on the flight home, Sleazyjet lined us all up in a very narrow corridor for 20 minutes before letting us on the plane. As the heat increased and my claustrophobia ratcheted up, I was a hair’s breath away from screaming at everyone, “GET ME OUT OF THIS CORRIDOR! I HAVE BREAST CANCER GODDAMMIT!”

So I’ve definitely felt that rage and sense of injustice, but it passed fairly quickly and I haven’t really seen a strong resurgence. Reflecting on why this is so and all I can think is that I accepted the diagnosis fairly early on. However, this is not a wisdom I gained from this particular life drama but from many others that have come before it. It was a lesson that was hard won. The psychological definition of acceptance “is a person’s assent to the reality of a situation, recognising a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest.” I would differentiate acceptance from acquiescence which implies a more passive state or sense of giving up. I’m not talking about throwing in the towel. I’m talking about letting things that you can’t change be what they are. I don’t have all the science to back this up as there is this grey area between psychological theory and clinical studies so forgive my very subjective take on this.

There are studies to show that the opposite of this state of acceptance which I will say completely unscientifically here is the fight or flight response. This evolved as a way to get us to run very quickly away from creatures with sharp, pointy teeth that wanted to eat us. It works really well for short term problems but is not so great in the long run and can lead to heart disease, weight gain, depression etc. A cancer diagnosis can produce this response but it’s not good to hang onto it. Cancer is a long term threat to life so you need a more sustainable coping strategy. Legging it or punching cancer in the face ain’t gonna cut it. On a side note, just for reference, this is why telling someone they can ‘fight’ cancer isn’t the best statement to hear. Being in cortisol-fuelled emergency mode will do more harm than good. Also the whole reason I got cancer is because I can’t ‘fight’ it. My immune system is being very silly and thinks cancer is its mate. Cancer is the ultimate frenemy.

Connected to this is getting a good nights sleep. Not an easy feat I accept. There is evidence to show that people with depression don’t experience vital parts of the sleep cycle and this interferes with their ability to process information from the day’s events and incorporate it into their sense of self. I feel that it’s vital to my mental health that I make cancer part of my identity. I will live with it for the rest of my life, whatever that looks like. The tricky bit is to accept cancer without letting it subsume the whole. Much as the physical manifestation of the disease is attempting an aggressive takeover of my body, it is trying to do the same to my mind. Ignoring it or yelling at it (or random strangers on planes) won’t make it go away. Just as I had to accept my lumpy boob, so do I let cancer become a part of my self. A small, but profound part.