Category: Reconstruction

Tough tits

In the time since my operation my right foob has recovered beautifully. Initially swollen and tender and sore at the stitching site, it has settled down into a relatively squishy, comfortable part of my body which I know I will learn to live with and maybe even love. The scar, under the implant, is present but not obtrusive. The nipple is nerveless but, I’m told, responsive to touch.

Well done, right side. A round of applause.

Left side. *shakes head* Why can’t you be more like your sister?

Instead I’ve endured a red and angry scar that has been by turns very hurty and then very itchy. And s-l-o-w to heal – the doctor made me fill three scripts’ worth of antibiotics while it took its sweet time to fix itself. The radiation-damaged skin had seized around the implant, making it flatter and harder and at one point about two inches higher than the right side.

It hurt. A lot. I thought about writing  a dark and poetic piece about it, but listening to tales of pain has the same appeal as listening to other’s dreams, i.e. none. But in summary it stressed me out and made me grumpy and forced me to interact with my kids at arm’s length, as if I were a not-so-affectionate aunt.

One thing I’ve been told is tolerating pain is very bad for you. Much more effective to take pain killers and do what you can to get on top of it. You are psychologically stronger and recover more quickly.

I know this. But did I act on it? Did I fuck. We are part of a species whose actions often make zero sense. I got lazy and didn’t take the Nurofen and suffered because of it.

“I just want to hide in a cupboard!” I told Faye on the phone, through a river of snot and tears. As she has for 30 years, she listened and sympathised. She then urged me to talk to my doctor, who I wasn’t supposed to be seeing for a fortnight.

So I got an earlier appointment and went along. In fairness, the pain had tapered off on that day, but was still a major source of concern. After the routine inspection/photography-from-4-angles, I hit the file transfer button and start to download.

She listened patiently before telling me, in iron-fist-in-velvet-glove doctor speak, to take a teaspoon of cement.

“Radiated skin is always compromised. A degree of discomfort is to be expected.”

She goes on to offer a bit of comfort which I cling to like a drowning man. “While sometimes it’s chronic, other times it comes and goes. It’s still early days after the operation and it may just be things settling down.”

But of course when I call home with the summary, I headline for the sympathy “HTFU is what she said, Ted! I don’t want to HTFU! I’ve hardened up enough, haven’t I?” Back home he is tender and kind, and along with his mum they provide an excellent force field against the kids as I book more sessions in the oxygen tank and wonder how the fuck else I’m going to strategise my way out of this.

Then a strange thing happens. The next day I wake up and the pain is gone. The ghost of it lingers, but it’s largely gone. I am weak with relief, euphoric.

Another lesson: there is always room for redemption. Always. I shouldn’t believe in decline, and should fiercely believe in hope. Time was, and we’re talking last week here people, time was I’d think “Well this is it. The side effects of radiotherapy are here now. Still worth having the treatment was it? Can you live with this?” and then I’m released from pain prison and I realise there is hope for improvement and has been all along.

Maybe it’ll turn out the left implant is just a place I hold tension. I am certain it’ll play up again and aesthetically, it’s still hard and high. But I can also be hopeful any pain it causes me won’t be permanent.

In the meantime I salute/take my hat off/give a deep bow to anyone actually suffering from chronic pain. People call me brave but you… you are legend.

Under reconstruction

The first stage of the rebuilding effort is nearly complete. Every week for the last seven weeks, my plastic surgeon has injected saline into the tissue expanders she placed under my muscles during the operation. Each expander now contains 275ml of fluid, and I’m the equivalent of a 36C. Normally the second surgery, whereby the expanders are removed and replaced with the real implant, would occur about six weeks later. But because radiotherapy is on the cards, stage two is going to have to wait for the skin to recover. Which could be a long time.

Friends are starting to ask how I feel about them. My response is “I’m pleased I can wear my normal clothes.” This is a real benefit, I know, as is the fact they’re technically excellent. But in truth, at best I feel ambivalent and at worst I am disappointed by all they bring to mind.

The relationship with my real breasts started to die on that ordinary Monday afternoon when I learnt of their treachery. Things took a turn for the worse when I held a fake breast in my hand, and joined a discussion with the surgeon about the Turkish delight consistency while a large part of my consciousness drifted out of my body. Then it suffered a further blow when I Googled “post mastectomy reconstruction” and couldn’t click on the image tab for three days. Of course, the relationship perished entirely when the nerves and flesh got scooped out on another otherwise ordinary Monday.

Any sort of relationship with the reconstructed area was bound to be complex. For a start, and this is obvious by now, I’m not at all comfortable calling them breasts, because they are so vastly different to what breasts are or should be. They are high and hard and get in the way when I reach my armpits in the shower. There is a three finger-wide gap between them and no amount of forcing together can close this gap.

The scars are located under the right (preventatively removed) breast and along the middle of the nipple-less left breast. Day and night, these unnatural creations are contained in a matronly post mastectomy bra, which does up at the front via eight hooks and eyes.

When I lie on my side, they stay where the are. But when I stay on my side too long, I wake in the night with a cramp, the kind where I’m torn between staying still with known discomfort, or shifting and meeting brief but severe pain. I will also occasionally get a twinge in the spot where the cancer was, which is spooky, but if this is anything it’ll be met by freakin’ lasers in the very near future.

Otherwise they are inert. I cannot feel anything when I press them. They don’t react to the cold or the touch. I am happy to show them to curious friends, and don’t mind if they’re pressed or pressed against. Like an elbow, they have no association with the erotic and so are not something to be precious or private about. Still I’m stopping short of posting a picture because I appreciate these are my hang ups and others will feel differently.

Friends say “They look incredible!” and I agree. They are incredible. Not real. And of course, I don’t need Google to show me what they look like.

I hate Turkish delight.

Honest appreciation

One adjective I hear a lot in relation to this blog is ‘honest’. I clearly have a limited concept of shame as I don’t really see it that way. My view is, since I’ve made the decision to share something so intensely personal it makes no sense at all to then be coy about it.

Which is just as well as there is plenty about this (cliche klaxon!) journey which is deeply sensorily unpleasant, as I discovered this week.

On Monday whilst in my office, I caught an unpleasant smell. I searched the room for a discarded milk beaker or a scrap of food… no luck. On Tuesday I visited the plastic surgeon for my penultimate expansion. When the nurse peeled back the dressing I realised the smell was coming from me. There’s a 3mm split in the stitching on the left AFKA breast and it had leaked a small amount of clear fluid called serous. Are you pulling a face of disgust? I hope so, because I did, and then I started… can you guess? Crying!

With a tenderness that made me cry more, the surgeon cleaned it up then wrote me a script for antibiotics in case I get an infection. I’ve been instructed to lay off the yoga as I’m pretty sure some vigorous arm movement is what caused it.  I pushed myself on the mat when I should have respected my limitations. I obviously had something to prove, but all I managed to prove was that I’m a twat.

Some encouraging news later in the week, though, when Ted and I went to another cancer surgeon for a second opinion as to whether I need radiotherapy. Picture a surgeon, and Dr. Simon will fit the bill. From a more traditional mould than my (amazing!) female specialists, he is bald, clean shaven and kindly. His slightly untidy room was full of tomes with titles like The anatomy of the breast along with a few thank you cards from patients.

He read the notes then jotted down my answers to questions which I’d anticipated and rehearsed. I felt calm, coherent and together until I uttered “I’ve got three young kids and I’ve got to do everything I can. Everything!” The words came out in a sort of asthmatic honk. Not for the first time, I was offered a tissue by the doctor who didn’t even need to look for the box. This obviously happens a lot.

“I can understand why you want the treatment and would be  happy to recommend it.” he said, to my relief. He’s the first expert who hasn’t dismissed me off the bat. “But.” The but. “I want to take your case to panel review to see what my colleagues think.”

I’ve decided ‘take your case to panel review’ is code for ‘no-one really knows what the fuck’s going on’. This’ll be the third time my case has been panel reviewed and the outcome is anyone’s guess, but I’m heartened this doctor will support my inclination to have radiotherapy.

He offered up some more information. “I am influenced by what I’ve seen. I’ve operated on a woman with a cancer very much like yours. Twice.” i.e. he’s seen a post mastectomy recurrence. I asked “And how is she doing?”

A pause. “May I examine you?” Hmm. I use this evasion technique on my kids. “Can you feel this?” he asked, tweaking my (lone surviving) nipple. “No.” Another moment so bizarre it brought on an out of body experience. He remarked the plastic surgeon has done an excellent job. “The best I’ve seen.” Which was kind of a compliment but also a reminder of what’ll be compromised if radiotherapy proceeds.

Earlier in the week, I read C : Because cowards get cancer too by John Diamond who died in his mid 40s. I nodded a lot. An extract from the final chapter has been in my mind all week.

I said to Nigella “It’s strange how in the last year, I’ve never appreciated you so much. Or the children.” … For the first time I found myself capable of talking like a 50s women’s magazine article without blushing…I still don’t believe that there is any sense in which the cancer has been a good thing, but, well, it is strange, isn’t it?”

A silver lining that is something of a paradox is that while I’m sure my kids’ behaviour hasn’t altered, I’m much more easy going around them now, almost like I’m their granny rather than their mum. Most of their transgressions seem so minor. Also, it suits me and Ted to be more laissez-faire right now. Yeah, stick the telly on. Hot dogs for dinner? Why not.

They are not the centre of my attention right now but at the same time I’m listening to them more. Laughing with them more. And appreciating them more?

Absolutely.

Perking up

Thankfully for me, and in no small measure for you too, no doubt, my funk has lifted and the world appears a bit brighter today. Theo is back to full health and I’ve another reason to be cheerful.

Here’s why.

There’s a dodgy sales tactic whereby you go to buy a widget and you think it’ll cost $100, the salesman says it costs $1,000 and you’re outraged, so he says ‘I’ll give it to you for $500’ and you feel relieved, even though it’s $400 more than you wanted to pay.

It’s a bit like that for me today.

I’ve found out that my right nipple can be spared without badly compromising the overall cosmetic appearance of my reconstruction. By the way does being reconstructed make me the bionic women? Maybe. Anyway they won’t be perfectly symmetrical, the scars won’t be in the same place, the nipples won’t look the same but it’s not oncologically dangerous and keeping Pinky in place is a crumb of comfort  I’ll take right about now.

Isn’t being miserable boring? I’m very conscious I’ve been spraying misery all over the place like some mad toxic sprinkler system. You back yourself into a corner and there’s nothing anyone can say. But of course my grief is legitimate and understandable but, let’s face it, more than a bit boring.

Another small mercy is today is the first day this week that hasn’t involved a long drive north to meet a specialist. This allows a sense of normalcy to pervade the day and I know, now, to cherish that.

Back up the coast tomorrow to meet my anaesthetist. The appointment was made on my behalf by my cancer surgeon Dr. Leong, who we met again yesterday. Dr. Leong will perform stage one of my op (sparing Pinky) and then the plastic surgeon Dr. Moko will take over. It was a full on meeting with talk of node biopsies, a description of the pathology of my breast tissue, the possibility that microinvasive cancers may be found  and a reiteration of the risks associated with my surgery. More of the yes doctor, no doctor business. More paperwork. More snorts of disappointment as I pay for the treatment.*

As we leave, Dr. Leong says “Try and rest over the weekend and I will see you Monday. My practice manager will tell you when she’s teed up the time for you to meet the anaesthetist, Dr. Crilly.”

Ted and I steal a quick glance at one another before biting our lips and looking away. We manage to keep it together til we get into the lift when we start hooting with laughter.

We call each other Ted after Father Ted… whose surname is Crilly. What are the odds?

*I am incandescent with (no doubt carcinogenic) rage at the inadequacies of my health fund’s contributions for this whole clusterfuck, but that’s another post.

Spare me

Did you know there are different types of mastectomy, depending on the type of cancer? Neither did I till a few weeks ago, but obviously I’ve been on a steep learning curve since then.

I had hoped to be eligible for the least invasive kind which is ‘nipple sparing’. As it suggests, the fat and tissue is scooped out and the skin and nipple is left intact. Basically, the prosthesis is inserted under the skin and the end result looks pretty realistic. This is what Angelina had.

However the MRI has revealed my cancer extends to my nipple, which means it cannot be spared without a risk of cells remaining. They can use the skin of the breast, though.

Bombshell #43: I not only get fake boobs, I get fake nipples.

Perhaps unsurprisingly, whilst Doctor Moko explained how fake nipples are made, I had another out of body experience. “Cut into three… pull up and twist into a nubbin….then a tatooist…the ‘areola’ is gradiated…highly skilled.”

She paused. “How do you feel?”

Like shit. I feel like shit. I looked over to Ted. His eyes are misting. Wordlessly, Dr Moko takes her tissue box and places it between us.

“I can’t believe we’re having this conversation.” he says to no-one. “Does she have to have the right nipple removed, too?”

“I recommend she does. I won’t be able to achieve symmetry otherwise.”

Next some before and after photos. “This patient is your age.”

“That looks good!” Ted and I look surprised.

“Well, that’s when the nipple has been spared.” She’s made a cruel but undoubtedly unintentional mistake. “This is more what you can expect.”

I start crying again. It looks…okay. But weird, for sure.

Next, the paperwork. Reams and reams of it. “Do you understand? Sign here. And here. Now we will require payment before.” A snort of disappointment at the cost. Yes Doctor. No Doctor. Thank you. See you Monday.

We drove home. I wanted to drive so Ted sat in the back to look after a fractious Theo. He had a hand on the capsule and one on my neck. I ate a Snickers. Probably won’t be able to eat one again for years.

“He’s sicked up again.”

“Again?”

A dusky layby. Mopping down the baby. He’s seriously cranky for the rest of the drive home, which is fortunately not far.

Back home to granny and the girls, who are full of stories of their day. We’re thrust back in to the bath and bed routine, including the roller coaster of laughter and angst. Finally Ted and I collapse on the new couch and chat and start to unwind the tiniest bit before Theo starts up again.

More than a flash of Irritation. Ted goes in. Theo is screaming, then silence. “Sam, come here.”

He’s calling me Sam? He’s worried.

Vomit is pouring out of Theo’s mouth like lava. So much vomit, silently streaming. We’re both staring in amazement before remembering to tip him forward. He coughs, violently, then lets out an exhausted moan.

Ted cleans the bedding and clothes. I clean Theo, he is tired but lets out a small smile of relief, then he looks puzzled – why his mum is letting out such loud sobs?

Nipples, no nipples… who cares? Long admission forms… who gives a fuck? At least they’re not for here.

Are they?

“I could only make one, small breast.”

My appointment with the plastic surgeon was at 9am and involved the high-level logistics  of offloading the girls and driving for an hour in rush hour traffic. Normally at this time, Ted and I are waiting for caffeine to do its thing and are thinking about the day ahead, but on Thursday we found ourselves in the highly stylised clinician’s rooms, floundering around amongst the throne-like designer chairs trying to stop Theo from repeatedly smashing his toy truck into the glass table. I didn’t know whether to gasp or giggle.

Fortunately as soon as I met Dr. Moko, any sense that I was a stranger in a strange land melted. She has a serene, assuring and non-conceited manner and I knew instantly I would be happy to have her work on me. We had a brief talk before I sat on a bed and had callipers taken to my breasts and then my stomach.

I had wanted to have what’s called a TRAM fat procedure whereby they take the fat from your abdomen and use it to make new breasts whilst keeping it attached to the muscleThe operation takes longer than implants but your body is likely to recover sooner because it’s not being asked to accept a foreign object. Plus it has a more natural appearance and if you lose/gain weight, so do the breasts. It is very advanced technology. But I am not eligible. Why? Because I am too lean. Too lean! FFS! Talk about the one time in your life you don’t want to hear that.  “I could only make one, small breast.” said the good doctor.

So I have to have implants. When she handed me examples of the different sizes and shapes you can have put in I did have a proper out of body experience “Why are we having this conversation? How did I get here?” before crashing back into the room and tuning into the $3 per minute expert.

I need to have the procedure done in a series of stages. During stage one – i.e when the mastectomy is performed – I’ll have two empty bladders inserted under the skin, each with a tiny magnet in it. I’ll go into the rooms each week when Dr M will pull  the bladder up using another magnet, then a small amount of saline gets injected. Your skin adjusts to the new size each time and when you’re as big as you want to go (this is limited, the more you stretch the skin beyond its natural dimensions, the more likely you’ll face complications),  a pair of prosthesis of identical size are selected and I’ll have another surgery to implant them.

That I’d have to go home from the hospital with an entirely flat chest swathed in a bandage made me really upset (and brought to mind Hillary Swank in Boys Don’t Cry). I was also dismayed at having to go under the knife not once, but twice.

But the major grief for me is… I will lose all sensation for good. Essentially paralysed. The funbags will become inert. While everything else, the ambiguous cancer, the surgeries, the recovery, revisiting grief for my mum and the logistical nightmares can essentially be put in a box labelled “Enormous (but manageable) pain in the arse” this loss is real and accounts for a lot of the thrashing about I’ve been doing. It is of course a very real loss for Ted too, although he will find some consolation in the falsies, no doubt.

It’s grief, pure and simple. But will it be worth it? Hell, yes.