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.

a-ha moments

I’m better now, but the last two days have been characterised by lots of crying, moping about and feeling ridiculously sorry for myself.

lie_down_try_not_to_cry_cry_a_lot_cleaned_525

This in spite of the decision being made – double mastectomy with reconstruction. The full Angelina. But far from feeling relieved, I’m incredibly daunted.

Having been  chirpy and optimistic previously, the more I get my head around my new reality – major surgery and a long recovery time – the more nervous I feel. Uncharacteristically, I’ve been catastrophising. How is my body going to cope with general anaesthetic and opiate-based pain relief? I’ve only had four Nurofen in the last year!

I’ve been thrashing around like Morten Harket at the end of the Take on Me video (or for those under 35, like a wild animal) resisting  what’s in store with all my might. I even had an attempt at bargaining, (one of the  seven stages of grief) toying with the idea of not doing anything – and feeling excited about it too – before realising that wasn’t realistic and bloody well crying again.

I felt stronger a week ago than I do now, but I know from losing mum and dad that grief is not linear, particularly in the early days when some hours you’re fine, others you’re in a heap, other times you think you’re fine and someone shows an ounce of kindness and down you go.

Whilst trapped in my cul-de-sac of raw horror I’ve had the self-awareness to keep a low profile, sparing others the indignity of my anxiety. Anais Nin says:

Anxiety… makes others feel as you might when a drowning man holds on to you. You want to save him, but you know he will strangle you with his panic.

No-one wants to come with you when you’re in a truly dark place and that’s fair enough.

The hardest thing about grieving is you can be supported to the hilt, as I am, but you are required to go through large elements, e.g. the operation and recovery in my case, alone. Say I’m in the mind of my friends for around 15 minutes a day, I reckon that’s about the same amount of time I’m NOT thinking of losing my breasts, having cancer, being operated on and so on.

A story with my kids. A classic 80’s track. A strategic challenge within Flying Solo. All of these provide welcome distractions.

But for much of the remaining 23 hours and 45 minutes a day, you can find me pinballing down corridors.

MRI. WTF?

I don’t know what I was expecting, but it wasn’t a confronting, exposing and frightening experience at the hands of someone called Gavin.

Walking through the dim corridors was not a promising start. Nor was being the youngest person in the waiting room by a good 30 years. (As Bette Davis said, getting old is not for sissies.) The magazines were dog-eared and mostly about fishing and boating. Fortunately I didn’t have to wait long before I heard my name and looked up to see G man.

“Hello Samantha, I’m Gavin.”

“Hi Gavin.” My eyes strayed to his name badge, pinned to a reasonably priced shirt. The ‘n’ was a bit worn. “Don’t you work in accounts?” I wanted to ask, but of course I didn’t. Instead I was the model of complicity, stripping down as instructed and putting my possessions in the shopping basket before donning the surgical gown. I forgot to remove the gold chain I wear every day, so Gavin did the honours with his chilly, chubby fingers.

Next, a little bit of comedy as he attempted to insert the needle through which a dye gets injected half way through the thirty minute procedure. He had the serious shakes. Luckily he got in to the vein first go.

I was ready. In through the door with one of those scary yellow and black signs on the door. Gavin gives the instructions. I’m to lie on my stomach with my hands over my head and put my breasts in the holes provided. “Like I’m sunbathing.”

“Yes.” he said, not warmly. “Ladies tell me the pressure on the sternum is uncomfortable. Unfortunately, there’s not much we can do about that.”

“The most important thing is to stay very, very still. If you don’t..” he peers ominously over his thin-rimmed specs “You may have to come back.” He handed me a rubber bulb. “Now here’s what I call the panic button. Press it only if you really need to. ”

“Okay!” Suddenly he’s cheerful, just as my hand involuntarily puts pressure on the bulb. “Pop these on and I’ll come in half way through to administer the dye injection.”

Through the headphones, I heard a big door close. Fortunately (small mercies) because of my position (feet first, tummy down) I couldn’t see the machine but I was about to become sensorily unnerved in every other way.

“That’s noisy!” was my first thought. But the machine was just warming up. It was like a washing machine full of ball bearings and if I thought the agitating was bad, I needed to wait til the spin cycle.

I was breathing quite heavily, but trying trying trying not to so I didn’t have to come back. A cool breeze up my surgical gown. A mental picture of myself. Tears course down my nose  onto the putty coloured plastic. Panic surging and retreating as the machine roars and quietens.

After five or so minutes of Alex out of A Clockwork Orange‘s torture, I remembered to surrender. I let it go. Let it all go.

Still I was pathetically grateful when I heard Gavin’s encouragement through the speakers “You’re doing really well. I’m going to come and inject the dye now, then you just need to stay still for 12 more minutes.”

A slight pull. An icy sensation up my arm. Old-school internet squeals and pips.

And then it was over.

I was in shock when I came out, and think I still am.

I’ve just glanced at the back of my hand, with the plaster shakily administered by Gavin. I realise this is not the last indignity my hand, and the rest of me, is going to go through in the next month.

And now I’m crying again.

Over reactions

As adamant as I am that my identity is unshaken by the little c, I recognise that others see me through this prism now.  Today I’ve seen lots of people for the first time since going public and the reaction has been a real mixed bag.

Some have apologised for not getting in touch – they’re too shocked.

Others chivvy me along in a brusque and matronly way.

Others look a bit sideways and downcast and either say out loud or with their expression: I don’t know how you’re coping.

Others look at me and cry.

Others have a form of Tourettes. “You look TERRIBLE! Mind you it’s not surprising.”

My preferred reaction is a heartfelt, strong hug followed by a simple statement like “Let me know what I can do.” or “I’m thinking of you and hope you’re staying strong.”

All of these generate an emotional response from me, ranging from wibbly lip to tears pricking.

I’ve also been the recipient of what I call ‘stealthy help’. A midweek dinner invite (I said “You do know I’m going to still be alive on the weekends for a while yet” before accepting gratefully). Playdate invites for the girls. Ducking out from my P&C secretary role and having the committee pick up the job of minuting. A lift to an appointment. Comments on this blog and loving emails. An encouraging Facebook message, for example Sue and her quotes of the day.

Today she cited David Foster Wallace and it describes these generous folks to a T:

The really important kind of freedom involves attention, and awareness, and discipline, and effort, and being able truly to care about other people and to sacrifice for them, over and over, in myriad petty little unsexy ways, every day.”

The relentless, unsexy helpers are the ones who make me actually cry.

News story

So the genie’s out of the bottle now and even though half of me still can’t believe I am talking about my faulty tits to my friends, colleagues, family and the internet, the other half is pleased I did because the reaction has been absolutely astounding.

I have been reassured by a number of people with great cancer-dodger stories. I’ve also heard more than one “I know someone who’s first screening showed advanced cancer” stories which make me thank God I got checked when I did. I’ve been told “I love you” more times and by more people than ever before in my life.  I’ve had a number of conversations that have acknowledged “It’s been too long since we spoke” recognising how easy it is for everyone to let busy-ness disconnect them from good friendships.  Of course when we do speak, we pick up from where we left off, even if that was years ago.

I’ve an ambivalent relationship with the Big Fella but I’ve had people who aren’t invoke me in their prayers, which warms me in a truly spiritual way. After yesterday’s suggestion of being thought of positively I’ve had people assure me not only that they will, but that they do.

I’ve had belly laughs courtesy of my friend Sue who’s taken to sending me an inspirational quote of the day:

“If you’re looking for sympathy you’ll find it between shit and syphilis in the dictionary.” ― David Sedaris, Barrel Fever

And Carol:

at least yours and mine is a respectable form of cancer. Imagine if you also had to go through the indignity of telling one and all you had cancer of the ANUS? Or a tumour on your LABIA? That really would be a conversation stopper.

I’ve also had my significant ego massaged more times than is seemly by people talking in very flattering terms about this blog.

By way of fairness, though, I’ve also had some people drive me potty with their response. One friend – who I still love, by the way –  sent me into caretaker mode (which I am very comfortable in) while she repeatedly questioned my optimism and told me she’d seen pictures of reconstructed breasts and they “Look pretty weird.” Thanks for that, love! She also said “Wow. That’s tough, with your kids so little. And a baby.” Her specialist subject? Saying out loud what everyone thinks but knows better than to verbalise.

I’ve tried poking the bruise of pain I’d feel on my kids’ behalf if anything happened to me, but I just wince every time. Of course, it’s my Kryptonite.

Then this morning , on the way to the school bus stop, Amy asked “Mum, where are you going to die?”

I swallowed hard “At home, in my sleep when I’m very, very, very old.”

Very, very, very fucking old.

Language matters

I have been thinking about the words and phrases used to describe cancer and a lot of it is very aggressive. Including the word ‘aggressive’. Here are some other words: fighting, brave, survivor, battle, win, remission, beat, victim, invasive, coping.

Don’t get me wrong, I am no fan of cancer and I’m not trying to stick up for it, but I really believe that the way I, and you, think about this, is going to make a big difference to my getting better quicker.

The slightly twee ‘little c’ and ‘unwelcome guest’ language as well as the about page where my condition does not dominate are my attempts to challenge the traditional mindset. Here are some other repositioning exercises (I’d welcome contributions from you too):

“I’m going to get through this” instead of “I’m going to fight/beat this”

“I’m a cancer-dodger” instead of “I’m a cancer survivor”

“I’m better now” or “I’m cured” instead of “I’m in remission”

This last point brings to mind a talk I saw by Ellen Langer, a doctor who I saw speak at last year’s Happiness and its Causes conference.  As well as conducting  a fascinating experiment on a bunch of 80 year old men, she also published a study which asked breast-cancer survivors whether they considered themselves in remission or cured. The “cured” group reported better general health, more energy, less pain and less depression. Langer concludes “[T]he extremely significant results of this study warrant further research and a possible rethinking of how to instruct breast cancer survivors to envision their relationship with the illness.”

I accidentally came across some research that supports this whilst searching for ‘regret breast reconstruction.’

A tendency to use coping strategies characterized by helpless/hopelessness and anxious preoccupation, rather than fighting spirit, were highly predictive of distress.

On a related note, my lovely friend and colleague Jayne has offered some practical advice for those who are feeling helpless in the face of my situation. She says “It’s not easy for people to banish fear and anxiety without replacing it with something more constructive. They get sucked into the drama and don’t know how to get out of it, and of course, it’s quite contagious (like all dramas are).”

Here’s her ingenious solution:

You might like to try telling those people (all of us actually) that there IS something they can do: ‘Spend a few minutes a day seeing me strong and seeing me healing and recovering easily and quickly. If you could do that every time you think of me, that would be great. There might be some other stuff you can help with down the track too and I will ask, but right now, helping me stay positive is really important and I’d be really grateful.’

Marvellous advice!

It’s about staying in control as much as possible in the face of lots of uncertainty. I can best sum it up like this:  while I have cancer, it doesn’t have me. No siree. Not by a long, long chalk.

Let it go

At this time of confrontation and indecision, I’ve found great solace in this marvellous poem by Danna Faulds. Thank you to Jeanette Darbyshire from Yogapad for sharing it with me.

Let It Go 

Let go of the ways you thought life would unfold, the holding of plans or dreams or expectations – Let it all go.
Save your strength to swim with the tide.

The choice to fight what is here before you now will only result in struggle, fear, and desperate attempts to flee from the very energy you long for.
Let go. Let it all go and flow with the grace that washes through your days whether you received it gently or with all your quills raised to defend against invaders.

Take this on faith; the mind may never find the explanations that it seeks, but you will move forward nonetheless.
Let go, and the wave’s crest will carry you to unknown shores, beyond your wildest dreams or destinations.
Let it all go and find the place of rest and peace, and certain transformation.

Some answers, more questions

I liked Dr. Leong immediately. She has a calm efficiency, and a good bedside manner. One of the first questions I asked is “Do I have actual cancer?” and she said “Yes.” without hesitation. So that’s that then.

We talked at length and I took on a lot of information about statistics and pros and cons of  treatments available. I  found a lot of the terminology over my head and had a few Homer’s brain moments where I zoned out entirely.

There are still big gaps in my knowledge but fortunately no decision needs to be made right away. The next step for me is an MRI which will identify if there are any other cancers within the breasts -WTF?! You don’t know this already? Apparently not, ultrasound/mammos are only partially effective for ‘younger’ women with denser breast tissue (which makes me laugh given the state of my poor envelope flaps).

Unfortunately, mammograms miss 20-25% of all cancers. They also underestimate the size of DCIS in a third of all lumpectomy patients. When this happens, the surgeon misses some DCIS and another surgery is needed. MRIs, which use magnets rather than radiation, can find what mammograms miss. According to a 2010 JNCI article by Dr. Constance Lehman : “Over the last decade, research has confirmed that of all imaging tools, MRI has the highest sensitivity in detection of DCIS (compared with mammography and ultrasound).” Although MRIs are considerably more expensive than mammograms, avoiding a re-excision would not only be less costly but also less traumatic.

While I’m fortunate to have access to an MRI it’s a reminder that the medical community can do the best they can but no diagnostic tool or treatment is perfect and all decisions have inherent risks.

Treatment choice is either breast conserving surgery (lumpectomy) or a mastectomy followed by a reconstruction. Once hearing of the downsides of each I felt as if I’d been offered the choice between a kick in the teeth or a punch in the bollocks.

Lumpectomies are less invasive and require a shorter stay in hospital. But they also require five weeks of daily (daily!) radiotherapy. The surgeon can’t know for sure the size of the affected area, so what’s extracted is biopsied and if the clearance is insufficient, back in they go. There is a 10% recurrence rate.

Mastectomies are a more complex procedure with a bigger wound (no shit!) plus there can be complications associated with the reconstruction and a risk of lymphoedema (mum had that – not at all pretty). There is a 0.3% recurrence rate. I’d also be eligible to have the non-affected breast ‘done’.

I had been considering the prophylactic double mastectomy, a la Angelina Jolie, in any case so had been really open to the sledgehammer-to-a-walnut option. But I’ve since got scared off this a bit by the downsides.

Dr. Leong was happy to offer either treatment. However before going ahead with a mastectomy I need to be referred to a plastic surgeon (laughable given the contents of my make up bag are a decade old) and a psychiatrist (ironic because there’s absolutely nothing wrong with me noggin *twitch* *twitch*).

Mum’s treatment started off with a lumpectomy followed by radiotherapy. The next decade were a catalogue of procedures that were increasingly invasive and misery making.

What would you do?

Something or nothing?

One of the many annoying traits of DCIS is its ambiguity. It’s classified as Grade 0 (out of 3). I was always a bit rubbish at maths but even I know that 0 means 0 and that you can’t be something and nothing at the same time.

There is debate within the medical community as to whether it’s actually cancer or not. It’s hard to know whether those with DCIS will get the full blown Big C, because if it’s identified, it’s treated. Those who are treated are four times more likely to get Cancer later. So to my mind the connection is obvious. Either way, my already high risk profile has been ramped up another notch.

My lovely friend Carol had this same condition back in 1997, aged 28. Today she is the picture of health and a true inspiration to me. Anyway she has this to say on the is it/isn’t it debate:

even my consultants couldn’t agree on the terminology, until the Australian one in typical no nonsense form said ‘bullshit’ to the ‘not really’ theory, saying to me I’d had it explained to me very badly and ‘either you have cancer or you don’t and you had cancer’.

One benefit of downplaying it is it helps me to contain my worry and stay optimistic, which I’ve just got to do if I’m going to stare this down. I have been feeling bullish and okay, I kept questioning whether I was really okay or just being repressed and pretending. But my sense of okayness stood up to my robust scrutiny.

Or at least it did until the middle of last night when I did properly cry, perhaps for the first time, when I read email responses from UK-based close friends and family whose love and concern reverberated across the planet. Not only was I side-swiped by homesickness, I felt guilt and sorrow for my siblings who were clearly revisiting the grief of losing our folks, which in turn stirred up dormant pain for me.

It’s as if my worry was contained like mercury in a beaker, and sharing it last night was like climbing up a ladder and upsetting the contents. Please forgive me for being a metaphor-murderer, or at least a taker of metaphors into dark alleys, beating them and leaving them for dead.

Yes, there’s no doubt that spreading the news is like sending it down an echo chamber where it comes back up at you amplified. But that’s okay, it’s all part of my reality and I just have to sit with these feelings and try to work out the lesson from them rather than raise up my quills to defend against The Fear. Last night’s lesson was that I am very deeply loved and missed. Not such a bad thing to discover.

Another positive is that in a strange way this experience gives me an opportunity to connect with everyone on a non-superficial level. It just sweeps away the trivial and brings what matters into sharp relief.

With my meeting with the surgeon planned for this afternoon I’ve been pooling the mercury back into the beaker so I can stay focused and calm throughout the meeting.

I find I can just about keep my cool provided I don’t invoke my kids. Too much of that mental chatter takes a grenade to that beaker and detonates the mother fucker. But more of that later. Maybe.

Thanks again for stopping by, I really am grateful for everyone’s deep love and support.