Posts tagged: multiple sclerosis

Day 117

By , February 18, 2011 10:00 am

Thursday 18th February 2010

Gestation: 20 weeks, 6 days

One year ago.


I tear at the edge of the envelope, and pull out the piece of paper.

I look at the piece of paper.

“Honey?”

Suse enters, placing an earring in her lobe, and walks across the room.

We both stare at the piece of paper.

“Five hundred and thirty?”

“Mmmm.”

“What’s the normal range?”

“Thirty-five to one hundred and ten.”

“So my level is…”

“…More than five times the upper limit of normal.”

We both look back at the pathology result again.

“How could that be?”

“I don’t know.”

“Could that be the cause of the pins and needles?”

“It’s not something I’m aware of.”

“But could it be?”

“Anything’s possible, I guess.”  I walk over and pick up the phone.  “And I know one way to find out.”

* * * * *

“Hi Terry, it’s Mark Nethercote here.”

“Oh, Hi, Mark,” he says, a little awkwardly.

“We’ve had an interesting result come back.”

“Yes?”

“The B6 level.”  I wait for a response.  “Susan’s pyridoxine level?”

“Yes?”

“Was five hundred and thirty.”  Again, I wait for a response.

“Mmmm.”

“The quoted range is thirty-five to one hundred and ten, so her level is…”

“…More than five times the upper limit of normal.”  There is another pause.  “That is very interesting.”

“So…”

“Yes?”

“Have you seen this before?”

He takes a moment.

“I’ve only had one other patient with B6 toxicity leading to peripheral neuropathy.  Many years ago.  But she was on very high doses.  How much does Susan take?”

“We just checked that.  50mg per day in her pregnancy vitamins.”

“Mmmm.”

“Mmmm?”

“Well, I’ve seen toxicity when it’s taken at more than 200mg per day, certainly above 400mg a day, but there’s not great data on all of this.  At 50mg, that doesn’t make a lot of sense.”

“There’s not a lot that has about this whole thing, Terry.”

“Mmmm.  The other problem is that the assay isn’t designed to look for high levels.  It’s designed to look for low levels of B6.”

“Because low B6 is a cause of peripheral neuropathy.”

“Exactly.  It’s hard to know the accuracy of the test in the upper range.  But all the same, it is a very interesting turn of events.”

“It certainly is.”

“I must admit, I don’t usually check for B6 levels.  I might have to start including it on my routine bloods for peripheral neuropathy from now on.” “Excellent.”

There is another pause.

“I should also add,” he continues, “that one other patient I had with high B6 levels got better in a few weeks.”

Well it’s certainly brightened up our day,” I add.  “It’s nice to have something tangible, Terry.”  I stop for a moment.  “But it doesn’t really make sense, does it?  Isn’t B6 water-soluble?  Shouldn’t she just wee it out?”

“At those levels, you’d think so.”

“But, as we said, Susan doesn’t always make sense.”

He laughs.

* * * * *

I exit the study.  Before I can open my mouth, Suse walks over, holding her laptop.

“I’ve just been on the internet, and found a whole forum of women – all on pre-pregnancy vitamins, all with similar symptoms, all attributed to B6.”

“Really?”

“Everyone says it is a little known entity.  They all said their neurologists didn’t check for it, even when pressed, and all had peripheral neuropathy.  A couple were even treated with B6 before it worsened, and only then was it tested and recognised.  This lead to prolonged numbness in one woman, and inability to walk for months in another.”

“Lucky we had Terry.”

“Lucky we had Terry,” she echoes.  “So, what did he say?”

“He was a little puzzled, but agreed that it could all be due to B6.  It doesn’t make a lot of sense, as the doses were so low, but maybe there’s an issue with your B6 metabolism.  Hopefully that’s our answer.”

I take her in my arms, and hug her close.  But she remains stiff.

“What is it, love?”

“Would you still marry me today?”

“yes, honey.”

“If you weren’t married to me already?”

“Yes, honey.”

“Even after everything that’s happened?”

“Yes, honey.”

“Are you just saying that to be nice?”

“No, honey.”

She pauses.

“Even if I can’t metabolise B6 like a normal person?”

“Especially if you can’t metabolise B6 like a normal person.”

* * * * *

Day 107

By , February 11, 2011 10:00 am

Monday 8th February 2010

Gestation: 19 weeks, 3 days

One year ago.


My mobile rings.

“Hello is that Dr Nethercote?”

“Yes.”

“You’re the doctor who was looking for a radiology report on Saturday?”

“Yes, I am.”

“Well, I know that someone rang on the weekend, but I just wanted to reconfirm that there was no demyelination.  The brain and cord look good.”

“And the hot spot?”

“An haemangioma.  They’re a dime a dozen.  Every second person has one.”

“That’s what I waited for three hours to hear on Saturday.”

“Sorry?”

“It doesn’t matter.”

“Anyway,” he says, continuing, “there is just one other thing.”  My bowels clamp.  “This patient also has a Chiari Type 1 malformation.  But there is no evidence of  craniocervical compression, and no syrinx.”

“Okay.”  My heads spins, as my Roladex does a run again.  “Sorry.  Remind me?”

“Herniation of the cerebellar tonsils through the foramen magnum.”

“Right,” I say.  Suse hovers close, a frown on her brow.

“Thank you very much,” I say.

I hang up.  Suse looks at me, awaiting an explanation.

“What is it?”

“You have a Chiari Malformation.”

“What does that mean?”

“That the bottom bit of the cerebellum – the part of the brain at the back – is poking through the foramen magnum, which is the hole at the base of the skull that connects to the spine.”

She pauses for a second.  I wait for her reaction.

“My brains are falling out of the bottom of my head?”

“In a way, yes.”

“Really.”  She stands for another moment, frowning deeply.  “I mean, this is just ludicrous, isn’t it?  I have a new disease every day.  MS one day.  Then cancer.  And now, my brains are falling out the bottom of my head?”

“Yep.  But it’s better than cancer.”

“Better than MS,” she says.

And then, she grins.

“You know, this is hilarious.  “The other day when I was over at Ella’s house, she said to me: ‘You know what, Suse?  At the end of all of this, they’re just going to tell you that your brains are too big for your head.’  And here we have it.”

“You do have a cute little coconut-sized head.  There’s not a lot of room in there.”

She laughs some more.  “And I’ve always said that one of these days, if I get too stressed, that my brains will explode out of my head.  And now it’s actually happened.”

“It has been a stressful couple of months.”

We both fall apart laughing.

* * * * *

Fifty-five minutes later, we’re in Terry’s office.   But this time, we’re in a different room;  one far less old-world than the one four days ago.  Our doctor of antiquity just has rotating rooms.  The bubble is somewhat burst.

“Well, you’ve probably heard the results ahead of me?” he says, sliding the films up onto his light box.

“I have, I have,” I say.  He looks over at me, waiting.

“No demyelination,” I say, “and just an haemangioma in T1.”

“Oh, yes,” he says, pointing, “but everyone has them.”

I feel stupider by the minute.  Where were all of these experts while we sweated it out on Saturday?

“And we were just told that there is a Chiari malformation.”

I stare at him, awaiting his reaction.

“Oh, yes.  But again, it’s only minor,” he says, tapping the lightbox as he looks.  “There is no cord compression, no medulla elongation.  It’s only a type 1.  Very good, Susan.”

“So they say,” she says, trying not to sound too relieved.

“I know it all sounds dramatic, but we only know about Chiari malformations because there are so many MRIs performed these days.  They’re about one in a hundred.”

“So, they say,” I echo.  “Therefore it’s not the cause of the symptoms?”

“No.  Originally we thought it was a Guillain-Barre type thing, but the nerve conduction was normal.  And then, we thought a demyelinating condition, but the MRI is normal.  So this leaves us with an inflammatory small-fibre thing.  Probably a viral thing.”

“What about a B12 thing?”

“You ask one-hundred people on B12 if they’ve got headache, and fifteen will say yes.  And probably the same for pins and needles.”

“I know.  I know you’re right,” I say.  “Same with the haemangioma.  But you tend to lose objectivity when it’s your wife.”

“Which is exactly why you come to see me.”  He smiles warmly.

“So – just so I can get this straight, the Chiari malformation – no problems with raised intracranial pressure with pregnancy?  Or in labour?”

“Not like this.  Nothing to worry about.”

“That’s what I wanted to hear.”

“Thank you, Terry.”

“You’re very welcome,” he says, shaking both of our hands formally.  He walks us to the door.  “We’ll be in touch.”

“About the small fibre type thing?”

“About the small fibre type thing,” he replies.

We grin and turn, waving as we go, like we’re saying goodbye to our grandpa.

And he watches, as we walk off down the hall, holding hands like two little kids.

* * * * *

Day 106

By , February 10, 2011 10:00 am

Sunday 7th February 2010

Gestation: 19 weeks, 2 days

One year ago.


I don’t sleep well again.  But this time, it matters little.

In the euphoria, it’s all good.

I go to work the next day, and despite my lethargy, it’s tinged with joy.

Because I know that we can have kids again.  There is no MS with remitting and relapsing courses.  And no chemo.

We can have a baby.

Green light.

* * * * *

I walk through the door.

“Hey honey.”

“Hi love.”

“The lab rang.”

“Oh yeah?”

“They sent through the results from the blood tests.”

“How are they?”

“The B12 levels are high.”

“How high?”

“Eight hundred and twenty-three.”

“And the upper limit of normal is?”

“Six hundred and fifty.”

I ponder for a moment.  “Really?”

“Can that cause a problem?”

I run the list in my head.

DAM IT BITCH.

“Well, it’s on the list of things that can cause peripheral neuropathy.”

“Really?’

“Absolutely.  B is for bitch.”

“Sorry?’

“Nothing.’

“So this whole thing has happened through excessive due diligence on the part of my GP?”

I walk across and scan the bit of paper.

The rest of her bloods are perfect:  her thyroid is tip-top, her kidneys fine, her liver is great.  Her sugar is normal, her inflammatory markers are all good, and her blood count is spot on.

“The rest of your bloods look great.”

“You didn’t answer my question.”

I pause for a moment.  “There is a chance, yes.  We’ll have to check with Terry whether this level…”

“…The fucken B12!” Suse exclaims.  “I try doing the right thing, I try to take my supplements.  And they were the cause of all of this?”  She tries to be angry, but after a few second, bursts into laughter, a little maniacal Suse laughter, before she starts doing a little jig.

In fact, we both fall back onto the couch, laughing our heads off.

Damn it bitch.

* * * * *

Day 105, Part 5

By , February 9, 2011 10:00 am

Saturday 6th February 2010

Gestation: 19 weeks, 1 day

One year ago.


We spend the next hour on a high.

“I feel like I’ve been given a new lease on life,” she says.  “A second chance.”

I nod.  “It makes the ectopic look like a walk in the park, doesn’t it?”

“And the shoulder operation.  Who cares about my shoulders now?”

We laugh, looking into each other’s eyes.  We sit there eating lunch, like two teens in love.  Both aware of this gift we’ve just been given.

“You know,” Suse says, a change coming into her voice, “I realised something.  If it had been MS, then I would have said to you, ‘go and be with someone else.  Go and have children with someone who can have them.’  Because I know that would have been your worst nightmare.  To not be able to have kids.”

A shock shoots straight down my back.

“Come on,” I say, gruffly.

“I would have.  I really would.”  She pauses.  “Which made me think that I must really, really love you.”

I frown, trying to think of something to say.

Nothing comes.

“Although, it’s easy to say in hindsight,” she adds.

We both laugh, happy for the break in seriousness.

She ponders a moment longer.  “And it also made me realise just how much I want to have a family.”

“I know honey,” I say, grabbing her hand again, this time brushing my own arm into my food.

“No.  I really mean it,” she says, a resolve having crept into her voice.  “I realised that if it came down to it – if it came down to me and a baby – I’d choose the baby.”

This time I really do frown.

“What do you mean?”

“Well, if I was pregnant, and they told me that it would be at the detriment of my own health, I wouldn’t hesitate.  I’d go straight ahead with the pregnancy.”

I stare at my food.

“You don’t like that, do you?”

“No.  No, I don’t.”

“Why?” she asks.

And she’s not fishing.

She really doesn’t see.

“I just… I don’t.  I just can’t fathom that.  On a whole series of levels.”

I keep my eyes down, for now not able to look up.

Suse nods, taking it in.

She smiles and grips my fist, swishing her unseen sleeve below.

* * * * *

Day 105, Part 4

By , February 8, 2011 10:00 am

Saturday 6th February 2010

Gestation: 19 weeks, 1 day

One year ago.


We walk the street, taking heavy steps.  Both of us try hard to enjoy the perfection that is Melbourne on a sunny Saturday.  As we stroll across our bridge, we watch the rowers below, trying to appreciate.

As we enter through the wrought iron gates of the Botanic Gardens, Suse wriggles her fingers free.

“Don’t squeeze so tight, honey.”  I look down, seeing the white of my webbing.

“Sorry, hon,” I say.  “Little bit stressed, I guess.”

“My hand is already numb.  Try not to make it worse.”

We actually manage a laugh.

We walk our path, heading towards the Observatory Cafe.  We pass kids, whole bundles of them;  some in the Children’s Gardens, some on the lawn.

How do you manage children when you have MS?

How do you handle a family with spinal cancer?

We enter the cafe.  I order my usual strawberry milkshake, wondering how it will sit in my stomach right now.

“How would you like to pay, love?” the woman asks.  She looks at Suse, who stares blankly, still not hearing the question.

Just at that moment, my phone rings.  Suse glances across at me, and I hand her my waller.  I run for the toilet, looking at the screen of my phone as I go.

Private number.

The phone buzzes three times in my hand, one for each ring, before cutting off at the end.  As I enter the cubicle, a blue text box pops up, obscuring my picture of Suse:  ‘You’ve got one new message.’

Bloody oath I have.

I lock the cubicle.  I press the voicemail button.  I close my eyes.  And I sit.

A saccharine woman begins the introduction, letting me know that I have a message, as if I was unaware.  The reception isn’t great, but I know what she’s going to say.  Then there is a man’s voice.  My stomach lurches as I hear him begin.  It cuts in and out, but I can make most of it out.  And above all else, I hear one word.  And I hear it the first time.

Haemangioma.

I press repeat, and listen a second time.

No evidence of Multiple Sclerosis.

Spine clear.

It continues to cut in and out, until I hear him say that sweet word again.   Haemangioma.

I hang up quickly, grabbing the sweaty, crumpled piece paper out of my back pocket.  I can only just make out Mothudi’s smudged number on it.  But it rings.

“Hi, this is Mark Nethercote,” I say.

“Oh yes, this is Dr Mothudi.  You got the message?”

“Some of it.  No evidence of MS, and the spine looked clear?”

I am now standing.  I am a kid at the table, waiting to blow out the candles, almost wetting myself with excitement.

“And the brain,” he says.  “It is also clear.  No evidence of tumours in the brain, parenchyma or spine.  No spinal compression.  And no plaques of Multiple Sclerosis.”

“And the hot spot?”

“An haemangioma,” he says.

Jackpot.

You fucking ripper.

A little bit of wee escapes.

“No chance of a tumour?”

“It was white in both T1 and T2 image weighting.  This means it has fat content as well as water.  It’s pretty much impossible for nasty lesions to appear like this.”

“No need to investigate further?”

“No.”

“So nothing more?”

“Nothing more.”

“Thank you so much,” I say.

“I’m just sorry it took so long.”

“It doesn’t matter now,” I say.  “It really doesn’t.”

* * * * *

I hang up, and exit the toilet running.  As I do, I find Suse, crunched over in a metal chair.  She looks like a plaster casting.

“Suse,” I say, breaking the spell.  She looks up at me, and for a split second is unendingly vulnerable.  She closes her eyes as she awaits her judgement.

“No MS,” I say quickly.  “Your brain and spine look normal.  Completely normal.”  She nods, comprehending.  “The white spot is an haemangioma.  A collection of blood vessels within the body of the vertebrae.  It lights up as liquid and fat.  It’s benign.  No cancer.  It’s a normal MRI.”

She opens her eyes.

There is a look of confusion on her face.  Almost disbelief.

“Normal?”

“Normal.”

“Yesterday I had MS.  And then today I had cancer.”  her eyes search the ground, trying to understand.  “And now it’s normal?”

“And now it’s normal.”

She stands and reaches across the table, squeezing my hands tight.

“I don’t have cancer and I don’t have MS?”  She squeezes even harder.  “I don’t have cancer, and I don’t have MS!”

“You don’t have cancer, and you don’t have MS,” I reply.

Suse lets out a laugh, a cough, a release;  all the way from the pit of her belly.

And then she leans forward across the table, and we kiss, her sleeve falling right into the dipping sauce as we do.

* * * * *

Day 105, Part 3

By , February 7, 2011 10:00 am

Saturday 6th February 2010

Gestation: 19 weeks, 1 day

One year ago.


At 11.45am, I ring the hospital again.

“MRI,” says the bored voice.

“Hi Emily, it’s me.  Again,” I say, a smiled forced into my voice.

“The report isn’t back yet.”

“So it would be reasonable for me to ask for Radiologist’s number.  Again.”

She sighs, and then she releases the Radiologists name and number in one breath, spilling it down the end of the phone.  I scribble as she speaks, hoping she’ll make it to the end before changing her mind.  She does.

Her grip on this bone is less strong than mine.  It’s just not worth a nineteen-year-old temp-secretary’s fight.

“Thank you, Emily,” I say.

“You didn’t really give me a choice,” she replies, a little bruised.

“No, you’re absolutely right.  But all the same, thank you for your compassion.”

“That’s okay… I guess.”

“You have a good day.”

I hang up quickly, punching the number in hard.

“Hello?”

“Is that Dr Mothudi?”

“Yes.  Who is this?” he asks in his clipped South African accent.

“My name is Dr Nethercote, and I’m ringing about an MRI that was performed last night.  On my wife.”

“Okay.  That will be reported in time.”

“Which is fine,” I say.  “Except that she’s a thirty-five-year old woman with symptoms of peripheral paraesthesia, and the indication was for spinal cord compression.  I had a cursory look, and have seen a mass in C7.”

The line is quiet.  Bar the sound of laughing children beyond.

I may be a husband with the bias of being too close.  But I still know how to play the game.

“Okay then.  Let me take your details, and I’ll get back to you.”

He hangs up, and the line goes dead.

Somewhere, children play happily, a universe from here.

* * * * *

Suse and I trudge around the house doing mundane things.  She gets the washing off the line, I put things in the dishwasher.  We apologise to each other for our failings.  Her for her ailing body;  me for my prying mind.

I’m sorry I looked,” I say.

She sighs.

“There’s something to be said for not always needing to know, Mark.”

I know.  I know.

But Christ, she gave us the films.  She handed them to me.

Directly to me.

What the fuck else was I going to do?

* * * * *

“I have to get out of this house,” Suse announces.

She gathers some things, kisses me lightly on the lips, and quietly exits through the front door.

She’s not angry with me, per se.  But she is angry.  And frustrated.  Powerlessness is the underlying emotion behind anger;  lack of control the feeling behind frustration.  And there is nothing quite like the threat of Multiple Sclerosis and spinal tumours to make you feel both utterly powerless and completely out of control.

So she leaves.

And I write.

We are both trying to regain our sense of power.  And a semblance of control.

Suse re-centres through contemplation.  I re-centre through activity.  Her therapy is to be still.  Mine is to write.    To tap away on this keyboard.  To pen these exact words you now read.  Believe it or not, the evisceration I feel from this whole fucked-up situation is eased by writing.  By recording the fuckedness of it all.  The powerlessness, the controlessness and the fuckedness of everything single thing that is happening to us.

Right this very second.

So I write, I tap, I hammer away.  And intermittently I grab the phone and ring.  And then I write.  And then I ring.  And I ring, and I ring, and I ring.  I try to wrest back control.  I leave a message on the Radiologists phone.  And I phone the hospital again.

“Hello Michelle speaking,” says a new voice.  No longer Emily.  These God damned girls must do two-hour shifts.

“Hi Michelle, is Emily gone?”

“Yes, her shift is done.”

“Her two hours were up, were they?”

“Sorry?”

“Nothing.  Look, I’ve been trying to contact Dr. Mothudi.”

“Oh, right,” she says, in a knowing voice.

“Emily told you?”

“She said you’d ring.”

“Well, here I am.  And I’m guessing he’s still at his kid’s birthday bash?”

It’s Saturday.

Kids love cake.

I get it.

“Let me try him again,” Michelle says.

“No, let me,” I say.

“Oh?  You have his number?”

“He gave it to me before,” I bluff.  “Thank you, Michelle, I’ll ring again if I need anymore help.”

Gone is the rationale.  Gone is the objectivity.  I’m now the desperate husband.

And I really need to know just how much to panic.

I hang up and dial.

“Hello, Dr Mothudi here,” says the voice at the other end.  A child squeals in the background.

“Hi, Dr Mothudi.  I rang earlier about the patient with the spinal cord lesion.”

“Isn’t that sorted out yet?”  The front door lock turns, and Suse walks in.  Seeing me with a phone to my ear, her face drops.  I turn away.

“No, it’s not sorted out.  I haven’t heard a thing.”

“Doctor Lim hasn’t rung?”

“Doctor Lim is putting in three PICC lines.  He’s busy.  And you are the on-call for MRI.  So unfortunately – I’ve been told – you will need to sort it out.”

And fucking do it.  Right now.

“Oh, I’m sorry about that,” he says, “I’ll be home in fifteen minutes, where I can look at it.  I’ll call you as soon as I get there.”

I hang up and I turn around.

There Suse stands.

“And I’d just calmed myself down again,” she says.

Nothing like the prospect of chronic illness to steals your plans for a pleasant Saturday.

Her face crumples up, and she begins to cry again.

We are a bundle of shit, wrapped in each other’s arms, inside a nightmare.

“Let’s go to the park, hey?” she finally says, through thick tears.

I nod, agreeing wordlessly.

* * * * *

Day 105, Part 2

By , February 4, 2011 10:00 am

Saturday 6th February 2010

Gestation: 19 weeks, 1 day

One year ago.


I only manage to hold out for about an hour.

“Can we go out for brunch?” Suse asks.

“I don’t really want to,” I mumble.  “I’m going to have a shower.”

She follows me into the bathroom.

“Mark, I’d really just like to have a normal day.  One normal day.  One where we get to spend some time together.”

I don’t answer.

I step into the shower and cover my face, the water running into puddles in my hands.

I have to find out what’s going on.  And I can’t do that without raising suspicion.

I can’t keep it from her anymore.

I have no choice.

I have to tell her.

The vomit rises again.

* * * * *

I get out, and dry, before heading into the bedroom.  Suse stands there, changing the sheets.  She looks at my reflection in the mirror.

“Are you not good today, love?”

“Not really.”

I walk around to my side of the bed, and plonk down heavily.  Suse follows slowly, sitting on the bed next to me.   She places her hand on my knee.

“Did you see something on the scan that you didn’t like?”

I close my eyes.

“Yes.”

* * * * *

I tell her I what I saw.

I tell her that I don’t know what it is.

I tell her that I have to ring to talk to the Radiologist.

And I tell her that I’m sorry.

We both cry.

“I’m sorry you married a broken woman,” she says, more tears galloping forward, her head bobbing lightly on my shoulder.  “That I’ve caused you all this trouble.  I’m sorry.”

“I’m not,” I say.  I sit up straight, taking her by the shoulders and holding her at arm’s length.  “I’m not, Suse.  You don’t learn these things until you reach this point.  But right now, that’s where we are.  And I know that I want to be here.  With you.”  I pause.  “That’s the only thing I do know.”  I let go, pinching my eyes.   “I didn’t want to have to tell you, but it wasn’t fair to keep it from you.  I needed to let you know.”

Her face screws up again.

“I just wanted this weekend to be in innocence.  In not knowing.”

Same here.

But I looked.

I turned towards the Sirens and they lured me in.

* * * * *

to be continued…

Day 105, Part 1

By , February 3, 2011 10:00 am

Saturday 6th February 2010

Gestation: 19 weeks, 1 day

One year ago.


I don’t sleep well.

All night, I toss and turn my body and my thoughts.  I consider my options.  Do I tell Suse or not?  Is it a tumour or not?  Is it cancer or not?  Should I worry or not?

This is the only one I can answer definitively.

Because I don’t know what it is.  Or what it means.  I know the implications of cancer, of radiotherapy and chemotherapy, and spinal fusions.  But what if it’s benign?  What if it’s an haemangioma?  What if it’s nothing to get excited about?

I lie there, trying to reason, running through causes, listing possibilities.  Going through what all of this means.  Going through what to do.  Going through our options.

The MRI may not be reported until Monday.  Without the answer, without knowing how bad this could be, do I tell her?  Do I?

I need to phone a friend.

But I don’t have one.

Not a Radiologist.

I don’t know what to do.  I don’t fucking know.

Someone, please give me the answer.

Do we go to Peter Mac.  Do they have an Emergency?  Do we turn up on Saturday?

But if we do, no one will do anything on the weekend anyway.  No one will start chemo on a Saturday.  Not while everything is stable.

So do I tell her?

Do I give her the list of all the bads it could be, without any reprieve until Monday?

Is it any better for two people to worry than one?

I decide no.

It’s 4.30am on Saturday morning.

Fuck.

* * * * *

Four hours later I get up, having been asleep for maybe one of them.  Suse is still asleep.  I rise slowly, watching her like a slumbering lion, fearful of her stirring.  She mews, turning over, but she doesn’t wake.  I slip out the door, making my safe escape.  I breathe again.

And then I grab the phone and walk outside.

I call the hospital.  I’m put on hold.  As I stand there, I stare out at our street, through our lattice, at the bright day beyond.  Our urban oasis looks even more barren than usual;  leached of all life.  I stand and stare.  Nothing moves.  Not even a car goes past.  Our street is dead.

Nine minutes later, I am put through.

“Good morning, Radiology.”  It’s the girl from last night.

“Oh great, you’re back on.”

“Great for who?”

“For me, I guess.”

“Really,” she says suspiciously, “why’s that?”

“Okay, sorry.  This is Dr. Nethercote here.   My wife and I were in last night.”

“Uh huh.”

“You handed us our films?”

“Uh huh.”

“How are you?”

“Good.”  Pause.

“I was just ringing to see if there was a chance that the films might be reported today?”

“I don’t know.”

Another pause.

“Is there any way of finding that out?”

“No.”

“There is no way.”

“No.”

“Is there a chance that I could I be contacted if it is reported?”

“No.”

“Can I ask who the Radiologist is?”

“No.”

“Can I be put through to the Radiologist directly?”

“No.”

“What can I do?”

“Not a lot.”

I take a breath, imagining I’m talking to a telecommunications help desk.

“Okay.  You put yourself in my shoes.  My wife had a scan to see if she has Multiple Sclerosis.  She might have cancer.  I don’t know.”

“I thought you said you were a doctor.”

“I am.”

“Then why can’t you look at the films?”

I did.  And I didn’t like what I saw.

“Because I’m a Paediatrician, not a Radiologist.  I need their expert opinion.  So I would really, really appreciate it if you could tell me if there is any way that I might be able to have an answer before Monday morning.”

“Look, I don’t want to be a bitch about it…”

“…No, please do…”

“…But I don’t control the Radiologists.  I’d help if I could, but I think the answer is no.”

“You think the answer is no?”

“I can think whatever I want.  I’m just saying that it’s unlikely that you’ll get your answer before Monday.”

I take a breath.

“Do they get sent the films?”

“What do you mean?”

“Do the Radiologists have internet access to them?”

“Yes.”

“Good.  So how about I just contact him?”

“Look, sir,” she says, sighing tersely, “the Radiologist might call.  After all, you left your number on the form.”

He won’t.

But I am nothing, if not a dog at a bone.

I will not rest, until I’ve bitten every ankle there is to bite.

* * * * *

I resolve to call back at 11.45am, just before the girl goes home, to see if it’s been reported.

I walk inside and grab the films once more.  I return outside.  I look at the four films at the back, the four that had the white spot.  In the daylight it is more easily seen.  In the same vertebra.  But better than my mind’s eye had ballooned it over the last twelve hours.

Am I overreacting?  Could this be nothing?

The spinal cord looks fine.  No impingement.  No cord compression that I can see.  No emergency just yet.

It’s just for me to worry.

There is still no point worrying Suse yet.

This is so fucked.

* * * * *

Day 104, Part 3

By , February 2, 2011 10:00 am

Friday 5th February 2010

Gestation: 19 weeks

One year ago.


I hold the first film up to the light.

I look at the prints;  sixteen pictures to a sheet.  There I see the images of Suse’s brain, chopped into different planes.  Slice after slice.

The lighting is hopeless.  These are two-watt bulbs, or something equally dull.  It’s like I’m trying to read Sanskrit covered in black muslin under weak candlelight.

But that’s okay.  I really don’t want anything better.  I really don’t want to see.

But I can’t not look.

I glance through the images, scanning for plaques;  evidence of MS.  In the first two films I can’t see anything;  obviously, blindingly, I can’t see a lot in this light.  I’m blindfolded and facing a bull as it charges towards me, in utter relief at my safety.

While conveniently forgetting that I’m in a bullring.

I hold up the next film, and then the next.  Nothing to see.  The shower water continues like splashing rain.  I pull up another one, and then one more after that.  Halfway there.  Another one.  Another.  Only a few to go.

Another…

And then it happens.  I feel the grip in my gut, even before I register the white splash before my eyes.  My gut twists into a cramp.  I stare at the image, a cross-sectional view.  My eyes blur as I try to make it out.

My head spins.

I feel instantly sick.

I grab the next.

I hold it up, this one in coronal plane.  I see the same plaque, in the same place, a white dot.  I stare, trying to focus.  I look back over my shoulder for Suse;  for my Mum and Dad as they catch me playing with Lego.

How am I going to explain this?

My heart races as I look at the next.  I feel it galloping, running around and around, trying to find an exit.  In my panic – a strange, centred panic – it takes me a few seconds to realise that it is actually in the vertebral body.

This is not MS.

This is a tumour.

A bone tumour.

* * * * *

My body re-lands on earth over the next few minutes, as I leaf once more through the films, confirming what I have seen.  There is nothing of concern in the brain.  It all looks perfect.  But I keep seeing this hot spot, a white light shining between the candles.  Smack bang in the middle of the bottom vertebra of the neck.

Suse’s neck.

I run hot and cold, again in a moment, sweat growing on my brow and lip.  And then a sense of calm descends.

‘I don’t want you to feel like you have to be the one to give me the bad news.’

I gulp, already complicit in my own lie.  What can I do?  There is a tumour.  But I’m no Radiologist.  Is it benign or malignant?

Suse walks out of the bathroom.

You can cut it with a knife.

“How is it?” she asks, as she dries her hair with a towel.

“Nothing I can see,” I say, not meeting her eyes.  It’s the trend of the day.  And yet, the lie spills forth more easily than I thought.  I feel the nausea rise.  “We’ll just have to wait for the report.”

I walk to the kitchen, and start to put things in the freezer that don’t usually live there.

* * * * *

In bed, Suse snuggles into me.

“How’s the numbness?” I ask.

“A bit better tonight.”  We fall again into silence.  I hold her tight, and she returns the grip.  She lets out a loving sigh.

I feel cold to my core.

“I don’t think you should do yoga,” I say.  “Just for the moment.”

“Why?”

“Just till we know what’s going on with your spinal cord.”  I can hear the tightness in my voice.  I cough.

“Do you think it might do something?”

“I don’t know, honey.”  Yes.  “I just think… wait till Monday.”

There is silence.

“You didn’t see anything, did you?”

“No.”

Yes.

And yet, this comes out as smoothly as anything I’ve said in the last twenty minutes.

Suse continues reading.

I put on my eye mask and close my eyes.

I think I’m going to vomit.

* * * * *

Day 104, Part 2

By , February 1, 2011 10:00 am

Friday 5th February 2010

Gestation: 19 weeks

One year ago.


We speed towards the hospital for our MRI booking at 8.45pm.  It’s only through some heavy hustling that we’ve secured ourselves the last appointment of the week.  And still, somehow, we manage to run late.  The more urgent the booking, the later we’ll be.  It’s almost a guarantee.

We wind our way through the snake of halls, heading down a lift into the basement.  We hurry towards the fatigued beige desk, the varnish worn thin from the credit card swipes.

“Hi there,” we say, panting.

“Appointment, is it?”

“Yes,” Suse says, the first to catch her breath, “for Susan Brock.”

“Have a seat,” the girl says.

“Does it matter that we’re late?”

“Not at all.”

We should have known.  It’s clearly a money-spinner when a private hospital runs a service until 10 o’clock on Friday night.

* * * * *

We take our seats, worn threadbare from the impact of wallets in back pockets.  They are arranged in a semicircle.  We sit on one side of the horseshoe, and on the other side, directly above the head of the only other person in the room, sits an old cathode ray television.

On it plays a thinly-scripted British detective mystery.  The only-other-person-in-the-room stays statue still below it, eyes glazed, like an extra in the movie;  a veritable extension of the set.  For the first twenty minutes, a morose, moustachioed English gent complains about how bad his life is;  the standard commencement to a BBC production.

“Susan?”

Suse is called through, and for my sanity, at exact the same moment a woman emerges to meet the glazed man.  As they leave, I turn off the tele, closing off the entire story line, including extras.

And the two little rotund men disappear;  one down the hall, the other into a dot in the middle of the screen.

* * * * *

Forty-five minutes later, Suse emerges.

“How was it, love?”

“I listened to ABC Classical through the whole thing.”  She smiles, approaching and kissing me.  I hug her tight.

We walk to the counter, both pulling out our wallets, and handing over plastic.  This just may max them both out.

“You can take the films with you tonight, if you’d like,” the girl says without looking up.   I feel a nervous pulse run through me.

If they come home with us, I will look at them.

With my untrained, un-Radiologist eye.

“Sounds wise,” I say, thinking the exact opposite.

She runs our cards, and then disappears, returning with a large envelope.  She hands it over.  I take the films, heavy in both weight and content.  I grip them tight.  We regurgitate our way back out through the passage we entered just an hour earlier.

And we drive home.

* * * * *

“Are you all right?” Suse asks as we pull up.

“I want to look at the films,” I say quietly.

I feel her stiffen.

“Do you think you should?  Maybe you should just wait for the report on Monday?”

I don’t answer.

We enter the house in silence.

“I’m going to have a shower, love,” she says, sighing slightly.

“Okay,” I reply.  Suse leaves the room, closing the bathroom door softly behind her.

And I’m left standing there.  With a bag in my hand, waiting for the energy-saving bulbs to warm up.

They don’t.

Ever.

I hear the squeal of the tap as it’s turned on, and the water as it begisn to fall.  I open the lip of the envelope, and pull out the ten films.  They stick to each other with static.

And I feel just like I did when I found that box of Lego behind Mum and Dad’s chest of drawers in early December 1981.

I can’t really verbalise what’s wrong.

I don’t really understand why.

All I know is that what I’m about to do just doesn’t feel quite right.

* * * * *

to be continued…

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