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.

8 thoughts on “No nerves to get on

  1. Julie Chadwick

    Wow so well written and described, I have such a sense of what you’re going through. So many things I’ve never fully thought about. You really are an amazing communicator.

  2. Heidi

    Thanks Julie darling! A big compliment from a brilliant writer! Yes, there’s all these details that separately aren’t a big deal compared to having cancer in the first place. But gathered together start to snowball. The neuronal aspect doesn’t seem well described in the literature and I needed to explore it. I was hesitant to approach the standard supports like the breast recon nurse or psychologist because they tend to pathologise things when I’m just curious and aware it’s a passing feeling.

  3. Karen

    Thank you for this, Heidi, beautifully written, as always. Wow I didn’t know about phantom nipples. I really liked what you said about how, your experience of your changed body is becoming deeper and more nuanced. There’s not a pigeonhole you can put those feelings in, I imagine. The survey answers were very amazing. All our bodies are all changing all the time, but slower, so we don’t notice so much. But I remember when my Grandma had dementia, there was one day she looked in the mirror and got a big fright and said, “That’s not my face”, and it seemed like she had been expecting her face as a young woman but was seeing the face of a 90-year-old, which must have been a massive shock. I suppose there is a constant wrestling of self and identity when the body changes dramatically in a short time. It’s interesting to think about what is the essence of our identity and how does it relate to our body and how it looks or how we perceive it looks. Fascinating to think that with phantom nipples you still have that perception. How does that feel, emotionally?
    Sending you lots of love and thanks for sharing your experiences with us, k xxxxx

  4. Paula

    Pfiiuuu, glad to know who the Master Flicker is 🙂

    Amazing to read these words. Stay strong, my friend.

  5. Heidi

    Karen, yes. So many layers to identity. Psychologically, socially, physically, neurologically. I touched briefly on the meaning from others in terms of what the surgeons see as a positive body change gets imposed upon us as patients. There’s lots more to say about that. So it’s a constant conversation between our brains, wider body, society and people around us. An amorphous beast shifting and changing, with sometimes unseeable variables influencing it.

    Thanks for sharing that story about your Grandma. Amazing. I guess expectation is another big element. What we expect to see in the mirror and the adaptation to what’s real. And all our perceptions are so deeply influenced by others as well as out own brains. Complicated stuff!

    I think for me the speed of these changes and the adds layers of trauma of surgery as well as the cancer itself are the largest elements. The phantom nipples thing is easing lately but when it first happened it was disorienting. It’s an interesting exercise to consciously be aware of your body. We normally walk around just being until something goes wrong. It’s often illness or pain that makes us aware of our bodies. I spend some time now putting my mind inside my new breasts. Sort of mapping them from the inside. It’s helping I think.

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