Month: August 2013

What you can do

So I go under the knife on Monday and am feeling a surge of concern amongst loved ones. Hardly surprising given it’s a major – perhaps the major – event in the whole process.

Of course unless you live nearby, it’s hard to do anything practical. Here are some ideas of how you can genuinely help me.

1. Get screened If you’re a woman and are knocking on 40’s door, or know one who is, please get in touch with your local breast cancer charity to find out how to access an early screen. If you have cancer in your family GET SCREENED. Seriously, just do it.

I was complacent for a long time, and nearly didn’t go when I did. There’s a woman in my community, a friend of a friend, who’s 44 with two kids and her first screening detected stage 2 cancer. That could have been me. Don’t let it be you. Just…don’t.

2. Get loving The silver lining of this (and there have been a surprising number of them) is how it’s put me on the receiving end of a tsunami of love. It’s given people permission to express deep affection and concern and I am supremely grateful for this. In fact given my chances of survival are incredibly high, I even feel a bit guilty to receive it. It has been an emotional but very touching demonstration of just how brilliant people can be.

Ted and I are going to come out of this invincible, I swear. I love the shit out of him right about now. We have never made vows but are living the whole sickness and in health, for better or for worse thing. And the richer or poorer, thanks to Bupa’s inadequacies.

Having your health compromised does remind you that life is exceptionally precious, and if by sharing my pain you’ve been encouraged to tell me you love me, hug your kids more tightly, or squeeze your loved one more poignantly then I’m grateful and glad.

3. Get living A few years ago I read this incredible article and it was just the grease I needed to move my priorities around to the extent that if I were to die, I would not have any regrets. I’d be extremely ticked off, of course, and feel physically sick at the notion that my kids would have to swim through an ocean of sorrow as I did whilst growing up. But if my number was up, I wouldn’t think I wish I’d enjoyed my work more, or spent more time with those I love. Could do better on the keeping in touch with friends thing, admittedly, but that’s just as well otherwise the mercury may well bust out of the top of my smug-o-meter.

4. Get giving If thoughts are turning to flowers, or books or chocolates or gifts, I’d like to thank you but also to say please don’t! I’d much prefer a card or email and for you to take what you were going to spend on me and donate it to this charity, utilised by a local family whose six year old, who went to preschool with Amy, is currently undergoing chemo. I’m pretty sure they’d walk a million miles to swap places with me right now.

Finally, I’d be really glad if on Monday at midday AEST you could send me what my friend Jayne quite delightfully calls “love, light and all that shit.”

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.

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.