Category: Anger

Radio Ga Ga

After gowning up for today’s session, I was given a reusable bag to keep the gown in for the duration of the treatment. This gesture made me ridiculously despondent. Then during set up on the gurney the in-the-way right foob had adjusted its shape again and needed to be secured out of the way with masking tape. I thought, really? Is this going to work? The technicians leave, the DO NOT ENTER sign clicks on. Their spy camera moves a fraction. I want to cry but can’t. Can’t because it’ll move my position. Can’t because I’m being observed, by the technicians out of the room and the machine inside it. My mind says “Let’s try some visualisation. Imagine a beach” and then my mind says “Are you fucking insane?” I’m Dakota Fanning in War of the Worlds. Still. Scared. Watched by a machine. There’s a dreadful pause before the long ERRRRP buzz sounds as the invisible beam finds its target. The tears come now anyway and spill, as predicted, into my ears. My chest wants to heave as I weep, but I have to keep still, so I do a bizarre pant, last used during labour to get me through the next three minutes. I endure the pause-ERRRRP three more times. Then it’s lights on, “You’re free to go!” and I storm outta there like a bullet from a gun.

In the change room, I reach for my magic cream to find I’ve forgotten it. I long exhale to the nurse’s desk. She is a proper nurse: plump, crisply uniformed – like Hattie Jacques only warm. I manage “I’ve forgotten my cream” before my face crumples. She takes my hand, leads me to a room and embraces me as I weep and snot into her shoulder.  On the way to the room I think once again about the amount of tragedy these uninspiring pastel walls have contained. “Let me look at you.” says Hattie, and I lift up my top. “You’re going to be fine.” she says, giving me a speck of light to stay with. She passes me a cream “Use this.” she instructs and I do.

Head down, I go back to the car where I do some good old-fashioned steering wheel thumping accompanied by primal screaming. Then I shake my head like a wet dog, dry my face, neck some water and drive off.

On the way home I talk to Faye about the pain because, did I mention, it hurts? Since diagnosis, physical pain has been well within the manageable realm. And I’m sure this will be too but given this is just the beginning, (today was treatment 2 out of 25) I’m nervous about what’s to come. Currently, it feels like moderate sunburn and was painful enough for me to take Panadol.

The damage radiotherapy does is often described as burning, and remedies such as aloe vera are touted. However, radiation wounds are not really burns, and they are not rated by degree. Here’s how one Radiation Oncologist describes it:

Radiation wounds are not “damaged” skin, per se, as much as they are “missing” skin…radiation causes skin to fail to reproduce properly, and thus as you “use up” your normal skin, like we all do all day, there are no new layers of skin coming up from the bottom. So eventually the area can ulcerate. This might look like a thermal burn, but it has very little in common with a thermal burn, and the treatments for thermal burns will not help much.

*shudder* Isn’t that gross? It’s enough to send me scurrying back into the HBOT chamber, where I’ll go for daily sessions for the rest of this week. Anything to help replace the missing, soon-to-become ulcerated skin. That it may also help to ease the pain is no small thing, although in the meantime, and on Faye’s excellent counsel, I’ll be maxing out on Panadol for good measure.

HBOT is the same complementary therapy I was originally going to do daily with the radiotherapy, then someone online called Boris suggested waiting til the end of radiotherapy to do it, but now it’s back to plan A.

Keep up, people.

Back home, I manage to embrace the kids without wincing.

“How was it, Ted?”

“I need to pee. I’ll tell you after.”

Next thing, I’m laughing and laughing like the crazy lady I am.

“What is it Ted?”

And it all makes sense.

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Collateral damage

Did you know that if you put a frog in pot of very hot water, it will try to jump out, but if you put a frog in cold water and heat it up to the same very hot temperature, it will stay put?

I am that stationary frog. If I had to travel the distance from before cancer to the latest dilemma each time, I’d go coco bananas.

So instead of reliving the cold fear accompanying the biopsy, the diagnosis, the notion of abandoning your family, the operation/mutilation, the pain of reconstruction, the fear of what you’ve bequeathed you kids, the dodgy pathology, the medical ambivalence, the toxic treatment and its long-term side effects, you put a bookmark in somewhere towards the end and take your broken self from there to the next challenge.

Which for me came in the form of this message:

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Yes I have a preference! A very strong one, and it is to Fuck This Shit. But of course, Hobson’s choices have become my stock in trade and I will respond like a good patient once I’ve made the ‘best decision’ whilst reminding myself there is no such thing, there is only best guess and living with it.

The devil is to deflate the implant and risk internal scarring, but keep it out of the way of the radiotherapy beam. The deep blue sea is to keep the implant as is and accept a bit of the beam will spill on to it. So even though it is unaffected by cancer because it gets in the way it’ll receive the treatment. Collateral damage. The real problem is down the track, when there’s a high risk of implant rejection. I’ve accepted this reality for my left foob, that the right may suffer as well seems like a bridge too far, no?

People often say, in a way that’s meant to be kind but often only amplifies my sense of isolation “I just don’t know how you get through all this.”

At this very second, I don’t either.

Rage against the machine

Recently I heard an interesting observation on trauma. People react in one of two ways: either they ignore it and pretend it’s not happening OR they are defined by it. The middle ground is healthiest. You acknowledge and then you move on. “It happened, but..” Today I learnt for sure that I’m on the denial side of affairs because when we pulled up to the Cancer Care unit for my radiotherapy planning session, the voice in my head kept asking “What the FUCK are you doing here?”

The injustice and incongruence got worse in the waiting room, which was full of old people, wanness, distress and dis-ease. I finally stop thrashing around and by the time I head into the session, I’m resigned. On my way out of the door, I glance at Johnno and Theo, who’s beaming, and I’m sadder than I’ve felt in a long, long while.

Here’s what happens next.

Just change into the gown and pop your clothes in the basket. (The basket and gown give me the Fear). Come through. You just need to lie down and put your hands over your head. Now I’m going to move you, don’t try and help me. Okay good. I’m just drawing some lines on you here and where they cross I’ll give you a small tattoo so we know where to direct the light. Keep nice and still. Mullumbimby is a lovely part of the world isn’t it? I grew up (OUCH!) near there. I’ve got (OUCH!) friends who live in Station Street. Just two more now. Lots of verrrry fun parties in Mullum. (OUUUCH! Mother fucker! x 2) You can rest your arms now. And you’re done! I’ll let the nurse know you’re ready for your little chat, then I’ll take you over to the hospital for your CT scan, so when you’re having the therapy it’s angled to miss your heart and stuff.

Cheers for that, love.

The nurse picks a few leaflets of the rack hands them to me. I snicker to myself, thanking God I’ve not been handed the cancer of the vulva one. I stop laughing when I scan the rack once more and see the one on palliative care. Grave words pass in this room. I scan the leaflets I have been given and can see I’ve read their contents online. I’m told “Girls get tired around week three but it’s best to stay active.”

Pop. Nice and still. Little chat. Heart and stuff. Girls.

Far out, if the cancer doesn’t get me, the tweeness just might.

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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?

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.

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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.