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.

The second cut is the deepest..

Monday is the day. By 11:30am I shall be hungry, dehydrated and dressed in a thin unattractive hospital gown waiting to go under the knife once more. My re-excision surgery is imminent. Another centimetre of my flesh is going to be removed around the original site of the tumour. Apparently this kind of surgery is quite common and about 30-50% of people with my kind of breast cancer go through this. If that number seems very imprecise then that’s because there isn’t much data around and the variants are pretty big. I did find one small study that 23.8% of people who specifically had the kind of surgery I had, ended up having a re-excision. It’s also a pretty big must for me. Not to blind you with stats but it doubles my risk of the cancer returning if I don’t have clear margins.

It has been a rougher time emotionally lately and I’ve been contemplating why. I think chemo was so hard and gruelling that I hadn’t spent much time preparing for the impact of surgery. I was all la-la-la, nothing will be as bad as chemo. I can do this in my sleep. But surgery has brought its own challenges and they’re very different from chemo so my coping strategies didn’t help me. Walking on the beach and hanging out at the allotment were a no-go. I was too devastatingly tired and I couldn’t lift a shovel, no mind dig with one. Pain also makes meditating and mindfulness impossible. Being in the moment when they are overwhelmingly filled with agony is not somewhere you want to dwell. Body scans remind you that everything hurts. Pain also disconnects you from everyone around you. I was too scared to go out in case I got bumped. When your body is constantly stimulated internally (by pain), the sun seems too bright, the world too noisy. I had this feeling at the height of nausea but it passed quicker. Plus there’s no bear hugs. So the isolation gets intensely physical and emotional.

The medical aftercare was also poor and there didn’t seem a clear structure or point of contact for problems. During chemo I had the hospital, the cancer ward, my oncologist. This time it felt like all the carers couldn’t wait to hand me off to some other schmuck. Where the chemo care was careful and cautious, the surgical was quick, sharp and fast. Perhaps much like the treatments themselves. I’m sure there’s a PhD in there somewhere. The single biggest outside form of support I’ve had was from kind and generous internet strangers on the Facebook page for the Younger Breast Cancer Network (YBCN). User-led, all my fears and questions found an audience who could reassure me with their own experiences and make me feel less alone. I take solace in that.

I did have another Buffy-style fleeting moment. This time I was going through my nighttime routine of gingerly scooting my front-fastening bra off my shoulder. It’s a tricky business as it can be unpredictable at which angle my scars will start to protest. For instance, I was in a changing room today trying on a top that I had managed to squeeze into feet first but I realised getting it off was another matter. I stood there staring in the mirror, perplexed, shifting one shoulder one way and wriggling one arm another. I even considered leaving it on and simply going to the till, bending over the desk and asking them to scan it from there. Luckily I had the awesome Kat to come to the rescue and pull my arms out. Anyway, back to bedtime. As the strap dropped down and I sat there with boobs flopping, I felt this wave of irritation and wish for these sacks of flesh to just disappear. Poof, be gone. I wasn’t sad, I wasn’t scared. I didn’t feel emotionally attached to them. What I think this means is that I’m transitioning to a state where I see my boobs as the enemy. I’ve heard other women talk this way and I never got it. Until now. At the beginning of all this, my boobs were mine. They were fun, bouncy, part of my identity. They did cool things, they played a role in sex, in feeding my baby. They gave me lovely, beautiful cleavage that caught my food (I actually found a chip in there the other day, a whole chip).

But ever so gradually, those things have been replaced. My boobs have been on show to the public. They’ve been handled many times by strangers, stared at in a non-appreciative way, cut into. The surgery clinched it and pushed this forward more. My boobs are starting to take on new meanings that are eclipsing what they were before. They are bits of flesh, parts of my body with no purpose other than cosmetic. And they are trying to kill me. Maybe this is psychological prep work for any future mastectomy. Or maybe it’s a dangerous trick of my mind, disconnecting me from a part of my body that I need to reintegrate into my sense of self. I’m on the fence. Maybe both those things are true and I will exist in this state until the cancer decides for me. As usual, I live with uncertainty.

So now I am learning my lessons. I am preparing for what’s coming on Monday. Kat has cooked everything in sight and the freezer is full of frozen delights. My Brighton Buddy is coming over tomorrow and I will hand her the hoover as she walks in the door. Now I just have to pack my bag in case something goes awry and I end up in hospital overnight. There are many things I cannot control about all this. But some things I can. Here I go then, preparing as best I can.