Category: Radiotherapy

Discomfort blanket

A couple of years ago, I wrote an article Job titles: Who do you think you are?, which provoked more commentary from Flying Solo’s audience than any other piece I’ve written.

It described how tricky it can be to define exactly what you do professionally. Descriptors have authority, but also come laden with assumptions. When I describe Flying Solo as a community of independent business owners, it’s often assumed I mean entrepreneurs, when very few are, in fact, entrepreneurs. And what’s more, most are not even entrepreneurial, which is just as well, because if they were they wouldn’t need the support and advice we provide.

People defy labels and their attending prejudices all the time. There are mothers who aren’t maternal, successful people who aren’t happy and psychotherapists who are in terrible mental health.

Then there are people with cancer who are in pretty good shape.

Often, I don’t think I behave as a ‘real’ cancer person is expected to. For instance I cycled into town on the weekend, where I bumped into a dad from school. He clutched at his chest “What are you doing on a bike!!” It was as if I’d escaped from an asylum. He went on “It’s brilliant! You’re out! It’s so good too see!”

If I’m surprising folks for that reason, then I’m happy. It may seem disingenuous of me but I don’t feel comfortable being called a cancer survivor/fighter/victim. Obviously it’s not technically untrue, it’s just that most people’s assumptions about how dreadful it must be to have cancer fails to capture how I feel about the experience as a whole. And it is an ‘experience’ – it’s something that’s happened, it’s not who I am.

As a side note, I don’t see myself as brave either, because that implies a) I had a choice in the matter, which I didn’t given I want to parent and live, for a long, long time and b) that those who perish failed to be brave enough, which is clearly untrue.

As a word-lover I’ve been fascinated to observe how incredibly powerful that six-letter word is. ‘Cancer’ shocks and scares like no other word I’ve uttered. In the UK there was a campaign that aimed to disengage this stigma. It declared “Cancer: it’s a word, not a sentence.”  But many people assume, very wrongly, that you’re going to die. Just like many also assume, again, very wrongly, that depression isn’t a real illness, when in fact it can often be not only debilitating, but also life-threatening.

But the little c is part of my world now so I have to accept the power and responsibility that comes with that. And if I don’t want to be seen as a victim, which I really, really don’t, I can’t go beating people around the head with it.

For instance, the other day after my treatment I got pulled over by the cops for speeding in a school zone. I gave my explanation – that I was from New South Wales and didn’t realise I had crossed the border where the time was different – and could see he was in two minds about whether to issue a ticket. “Do you have anything else to say?” he asked.

I looked over at my branded bag containing my gown and lotion. “See that bag? That’s the logo of the Premion cancer facility. I’ve just finished a radiotherapy session and am on my way to my psychotherapist, who’s helping me make sense of this total and utter nightmare of a year, and he will ask me questions about my dead parents and my children and I will weep and weep. I will then head back home to my daughter and baby son, who are with their father.”

Is what I could have said. Instead I said “I’m sorry, it was a genuine mistake.” And he let me go with a warning. My powder was kept dry.

That bag. Honestly. It was as if it contained the Ring, or a light saber. I could have easily, easily pulled it out and got off for sure. Might I have been so principled if he’d written the ticket? I think so, although I guess we’ll never know for sure.

Brené Brown calls oversharing for attention ‘floodlighting’, because your conversation partner is dazzled and discomforted by your words.

At the psychotherapist later that morning, the receptionist told me in detail about her lousy day so far. It made my tongue bleed I was biting it so hard. The treatment. The run in with the law. “Your lousy day, huh?” I said. But again, only in my head.

Because how can I claim to not want to be identified with cancer, yet at the same time wrap myself in its protective tentacles?

Numbers game

My mate Mike is the smartest guy in the room. An expert on stats, he described a phenomenon whereby people identify with numbers in a way that is convenient to them. For example if you hear that 80% of people earn more than $x per year, and you earn more than $x you’re likely to think “That sounds about right.” Whereas if you learn less than $x you’re more likely to think “It’s got to be more than 20%, surely?”

Similarly on people’s wedding day, neither the bride nor groom believe theirs is going to be one of the 33% of marriages that end in Splitsville.

I make this point because I think we believe we can defy stats. I know I did. I thought I could avoid what’s turned out to be my genetic destiny through my behaviour. For the last decade, I’ve felt healthy and looked after myself. Before my diagnosis, the likelihood of developing breast cancer seemed fairly remote, in spite of mum dying from it. I understood my chances to be about 1 in 8 (versus 1 in 12 for the general population) but conveniently I identified with the seven, and never the eighth.

Until mid-2013, I’d done a pretty good job of avoiding life’s slings and arrows. About 1 in 200 mothers my age have a baby with Downs’ Syndrome – not me. A surprising number of my demographic have addictions, to alcohol or maybe prescription medication – again, not me. I’d never even stayed the night in a hospital. I perceived the avoidance of suffering as a right. It was my modus operandi, my default, and I bet I’m not the only one. I was disgusted by my diagnosis. Cancer had no business making itself at home in my body, no business at all. I felt unlucky, but stopped short of saying “Why me?” because a primary school biology lesson could explain that one.

Now I’m one of the Others, things look and feel v-e-e-e-ry different (note: not worse). While I feel brutalised by life and betrayed by my body, and my ‘you never know’-o-meter is far more sensitive, my sense of appreciation, my love for others and my appetite for risk has never been keener.

As well as introducing you to extremes on the emotional spectrum, cancer is a catalyst for more fundamental life shifts. This isn’t always welcome, although arguably things turn out they way they ‘should’ have prior to the life-changing news

If friendships are dodgy or work isn’t working, or your heart’s not at home, the diagnosis exposes this almost instantly. I was fortunate to have foundations that proved solid, but for many cancer is, I think, more stressful because it puts you in these confronting positions. I reckon this quote does a nice job of explaining the way adversity brings out the truth.

It exposes the most raw, vulnerable and honest version of us. It can be unsettling, though, to look that deep into our soul and see who we really are. But it’s also profound. In fact, I think it’s necessary, because it’s where find our real voice. So we’d better come to peace with that version of us; and learn to respect and trust it.

Even if you’ve avoided severe adversity to date, life will send a wave your way and there are three things you can do when it does:

You can run from it, but then it’s going to catch up and knock you down. You can also fall back on your ego and try to stand your ground, but then it’s still going to clobber you. Or you can use it as an opportunity to go deep, and transform yourself to match the circumstances. And that’s how you get through the wave.

Every time I’ve struggled, it’s because I was running from the wave, railing and thrashing against my reality. My keenness not to suffer forms part of my suffering – textbook entitled-Westerner response, I’m guessing. I tell myself to surrender, but still have dreadful days where I get all Verucca Salt-like.

Most of the time, though, I do try and go deep.

It’s hard down here. Sometimes I worry that I’m going crackers. I think of oddities, like Eleanor’s drawings. Why aren’t I in them, darling? Because you’re always at the doctors. I think of everything I have, the amount there is to lose. It helps me keep hold of my breath, even though I’m turning blue.

In just five treatments time, I will gather a last surge of energy and push up from the seabed. And I will breathe again.

The Wall

At the start of my course of radiotherapy I made myself a promise. Each day, I would avoid the lift and instead climb the three flights of stairs to get to the facility.

So far I’ve kept that promise. Even if I’m running late, which I do a lot, or if I have to return to the car for something, I use the stairs.

I just can’t articulate why it matters so much that I do this. I suppose it’s a small act of defiance in the face of being told time and again that I can expect to feel tired and sore, especially towards the end of the course of 25 sessions. Surely as long as I can manage the climb, I can manage the etc, etc.

And so far it’s encouraging news. My skin is holding up well. I’m not too wiped out although this morning, each of Amy’s requests for porridge were like an Inception-knock back to consciousness. Still I’m up to do the 90 minute round trip drive alone (my preference) and have been going to the hospital with a kind of head-down resignation. I have been doing alright.

But two days ago, when heading in for treatment 16, something strange happened. I arrived just in time for my appointment, but got stuck at the foot of the stairs. I had this ridiculous conversation with the voice in my head.

‘No. I can’t. I just can’t. And I won’t! I’ve had enough. I want out.’

‘But you have to do it, Sambo. Come on.’

‘No way!’

For several minutes this terrifying dialogue took a hold and left me immobilised.

Once I’d finally hauled my sorry, demotivated arse up there, I found the unhelpful chatter continue whilst having the treatment. Much of the 20-minute appointment  is spent setting me up. A team of two move the gurney, shift me here and there, mark me with pen. Then they check one another’s work, which reminds me of a cabin crew disarming the doors and crosschecking. Actually the team’s disengagement with the job is also reminiscent of a flight crew’s. Normally I go into shutdown mode during this tedious process but on that day, I found that impossible. I felt like a piece of meat on butcher’s block and had to set my jaw to fight tears.

On the way home, normally a neutral affair, I found myself raging at the bullshittedness of everything. This is just bullshit. It sucks! I’m seriously over this and so on.

By the time I got back home I was a tinderbox ready to explode in the face of the next person who dared to crossed me. Fortunately, everyone was in good cheer, which gave me a chance to come down from the stratosphere and calm the fuck down.

Later I was reflecting with Ted that maybe I’m feeling it because I’m not quite at the brow of the hill. I’m past half way, but it’s not over. I emailed my friend Jodie, a marathon runner, to ask at what stage in the race she really felt the pinch. She responded:

There were two times when I really hit it and both were when I got an unbearable stitch (on a 38km training run and in the actual 42km race, both at about the 30km mark). I hated it. In the race I remember telling myself I was above the pain and all that, and that got me through for a bit, but I also remember having the distinct thought: Remember this feeling: it’s not fun. This is not fun and I don’t want to be here.

Both times it was a matter of “just get to the next lamp post and see how you feel”, then “just get to the next corner and see how you feel”. I don’t know what the “see how you feel” part was about – maybe tricking myself into thinking there was a possibility of stopping when I got there. But of course, when you do, the next corner’s not that far away. And so you keep going.

Today’s treatment was hard but better and tomorrow’s will be too, I hope.

I hope.

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.

PMS1

Ready for radio

So my radiotherapy starts tomorrow at 4pm and with all the melodrama contained within my last post, you may think I’m weepy and hand-wringy but in fact, I feel completely ready and calm. It’s tempting to ascribe this sort of resilience to The Experience and How Much I’ve Grown etc but in reality, long term moodiness is unsustainable for me because it’s so, so dull.

Here’s a summary of last week’s events. I had a planning session at the radiotherapists whereby I was lined up on the machine, measured and tatooed then taken to a different machine for a CT scan. My radiotherapist (RT) called to say the scan showed my right foob was in the way of the beam that was going to the middle of my chest. So she asked my cosmetic surgeon (CS) if she would fully deflate it. The CS said this would lead to a risk of a build up of painful scar tissue. I had a tantrum. Then I pulled myself together and established from the RT that the part in the way of the beam was on top, and not beneath, so I asked whether a partial deflation could work. This would hopefully move it out of the way whilst minimising the risk of both building up scar tissue and knocking down my ego. RT agreed it was worth trying so the CS removed 200ml out of the 425ml from my right implant.

And luckily, it worked.

I found this out after I took my new lopsided form back to the radiotherapist’s for another go on the machine, where three operators buzzed around me, consulting with the chief RT in very technical language about how to optimally position me so my right chest and its lower profile is out of the way AND the beam avoids my heart. “I don’t say this publicly,” the RT whispers as they confer “But these are my best people.” The atmosphere spoke of a highly engaged team attacking an enjoyable challenge – a difficult Sodoku, perhaps. The lights are dimmed, which adds to the theatre (and the general wanting to get the fuck out of there, to be fair.) Anyway in the end the solution was, as solutions often are, simple and elegant and involved inserting a shallow wedge under my left shoulder.

More good news is that although the deflated side is definitely smaller, it is not terribly noticeable when I’m clothed. The main difference I think is the texture, which is slightly squidgy versus the hard shell that was there formerly. When I look down it even, dare I say, looks normal but the mirror reveals the very abnormal sight of folds of skin on the underside. Not to worry, I’m quite good at avoiding mirrors.

Today I had a hot shower and shaved my armpits. Neither are permitted during therapy. I have bought a car charger so I can listen to Spotify via my phone which will keep me company during the long drives. I have offers of help which I will gratefully accept. I have my Miaderm cream and some new yoga clothes to wear to the sessions. There are meals in the freezer.

I am ready.

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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Treat yourself

Because radiotherapy is not typically given to women who’ve had DCIS and a mastectomy, I suspected the radiologist may struggle to make a recommendation on the spot. That’s why the week before my consultation, I emailed her a two paragraph summary of what I was hoping to discover during our consult, namely what are the pros and cons of radiotherapy in my case.

“Your doctors must love that you’re so proactive!” remarked a friend, kindly. My suspicion is they’re in despair that someone with a diagnosis and a computer can access studies and forums and within weeks can gain a little knowledge (= a dangerous thing) whereas they had to go to medical school for years and years to gain their expert status.

I went to the consult armed with my research (!!) which shows although general recurrence rates are quoted at 1-2% for DCIS mastectomy patients, there are a number of factors that raise my risk the cancer will return to about 15%, notably that cancer was found so close to the edge of the extracted tissue, less than 0.02mm away. In the ‘throw the book’ vein, I want to access radiotherapy to hopefully destroy any cancer cells that might be lingering inside me.

I worry that by seeking this, I’m being an overtreating nutter. And because I’ve not met an expert who thinks extra treatment is justified, no doubt that’s what they think too.

To her credit, the radiologist had done a bit of homework and printed out a study (that I’d already read) whose conclusions were inconclusive. And that was the tone of the whole consult. That and slight disdain. I knew I was in trouble when she said “You didn’t really have cancer” (*sigh*) and she couldn’t hide her incomprehension as to why I’d had the prophylactic mastectomy. “It’s a very personal decision.” she conceded.

Anyway I was all ready for a robust debate but instead met a wishy washy “There aren’t the studies to prove it’s worthwhile.” To which Ted, who’s not at all convinced the radiotherapy is the right thing for me to do, gave a swift, Twelve Angry Men- style response which included the phrase “But that also means you can’t prove it’s not worthwhile.” and lots of other supportive commentary I gamely nodded through but now can’t remember.

In the end, she took the case to a panel review of a dozen other radiologists and fed back “The consensus is there’s no reason you shouldn’t have the treatment.” which is both vague and reassuring. Vaguely reassuring.

But radiotherapy is no picnic. Here’s a summary of worst case scenarios:

  • Scenario 1: I have radiotherapy and feel more relaxed about a recurrence because my risk will reduced by about half to two thirds. But radiated skin is damaged inside and out, so is very hard for cosmetic surgeons to work with. Here are ways the implant could go pear shaped: it’s cosmetically not acceptable (skin can seize around the implant pushing it higher than your other fake book, or ‘foob’), your implant can burst through the skin (I read one woman’s story on a forum where she described this happening whilst at Disneyland, this made me laugh a lot), the scars inside and out can get all gnarly which can lead to chronic pain. This most common complication is called ‘capsular contracture’ and can range in severity from mild to unbearable. Nothing will necessarily occur immediately but is likely to sometime over the ‘life of the implant’ = the rest of my life. My surgeon said there’s a 9/10 chance further surgery would be required to upend pear at some point.*
  • Scenario 2: I do nothing, short term all will be cruisy physically but I’ll find this mentally tough. The implant will go in, I’ll move on but will definitely have a doubt that I should have had the extra treatment. If it’s my fate to be in the 15%, sometime over the next five years, a routine check up discovers a lump, or I find it myself in between check ups. There’s a 50% chance this is more DCIS (non invasive) in the remaining breast tissue. There’s a 50% chance it’s invasive. Treatment will be surgery to remove the lump, followed by radiotherapy then chemo if necessary. Back on cancer roller coaster.
  • Scenario 3: Worst worst case – do radiotherapy and cancer comes back. I can’t have radiotherapy again and will have to go straight to big, big guns of chemo (gulp). That is the principle reason JP is opposed to my getting the treatment now. But to my mind it’s currently treatable. Leave it to chance, and who knows?

* another alternative in this event, which I find intriguing, is to become a ‘flattie’ and remove the implant altogether. Some flatties get a massive tattoo done across the area….hmmm.

I shared these with Sue who summed up the last point very succinctly:

There’s a murderer coming towards  you, and you have a hammer, you could use the hammer to shatter the leg of the murderer which will likely incapacitate him. Isn’t that better than worrying that he may be able to crawl towards you so better to save the hammer to try and whack him on the head when his hands are round your throat?

I agree. I think. But it’s very hard. And I am very over all this.

Anyone out there got a crystal ball?