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.

Info-ed up

montefiore

 

A very busy day today. Adam passed his driving test! Woot woot! My mum and sister came down to do childcare while Adam came with me to the hospital for an info session on the upcoming treatment. And I went to my first ever breast cancer support group. Well, my first ever support group. A surreal time but my new life in full effect, at least for the next year. So there was a barrage of information about chemo. Highlights include; make friends with power naps, call them if my temp goes above 37.5 degrees (no exceptions), my bones will ache, my hair will likely fall out, I will oscillate between diarrhea and constipation, treatment is 2 hours on a drip, got to stay 6 hours on a second day for the Herceptin. On the plus side, pineapple and ginger are my go-to foodstuffs to help with everything. I have my own room with a telly and a view. The nurse is AWESOME! And the bleeding chef came to ask my for my order on Wednesday and will prepare me special vegan treats. Ah, if only the NHS had enough funding to be like this for everyone. Weirdly, the nurse told me 70% of their patients are from the NHS. Short-term budgeting in all it’s tragic glory. But bonus for me, I get access to a ‘quiet room’ designed by Brian Eno ;-p

After all this I went to my first breast cancer support group and at first it was a bit intimidating and alienating. On the programme tonight was a make-up artist who came to educate us all on how to apply primer and look natural (wearing products). I think it’s cool if peeps wanna feel good doing that stuff and if it helps them on their ‘cancer journey’. But to me it kind of felt like we were all learning how to mask our illness. Paint on those eyebrows, pencil in the defining line of eyelashes. Don’t look sick. She didn’t tell me how to replace the nose hair I’ll lose and deal with the constantly runny nose. I don’t want to end up looking like a caricature of myself. I’m sick and I’ll look sick. Ironically not from the disease, but from the cure. Anyway I opted for an aromatherapy massage instead of finishing the make up demonstration. A good choice. The lovely masseuse talked to me about my cancer and then gave me a wonderful head, face and hand massage with Neal’s Yard oils. It instantly brought back some sense memory from days when I regularly burned essential oils to relax. Strangely the massage was in the ‘bad news room’ and now it’s been totally transformed for me. So a great therapy on many levels. I went back into the main room, feeling relaxed and less edgy about the poor make-up girl. It was near the end but a woman approached me and we instantly got chatting about all things cancer. Most people there were at the end of their treatment or just waiting on reconstruction. I was the only one at the beginning. So we talked as fast as we could, blah blah hair loss, blah blah implants, blah blah cold cap. That last bit of blabbage was very useful and exactly why I wanted to come to a group populated by wise bosom women. I’ve been offered a cap that is filled with cold gel and apparently it slows down cell replication, therefore protecting hair from the chemo drugs. You wear it for half an hour before chemo, during and 2 hours after. So it extends the chemo for a few hours and is also extremely uncomfortable to wear. The women used the word ‘torture’. As I’m not too bothered about losing hair, I think I’ll go for less intense hospital experience and just shave the bugger off. They also told me about the infamous ‘chemo curls’ that come back after treatment. Hugs all round at the end and the fastest friendship I’ve ever made. Now I’m gonna chill with the family and see if Lilah will go to bed on her own (with her cousin Shaye in the same room). Maybe one more family milestone to come today.