Thank you for the days

I sit bolt upright in bed at 2am.  My subconscious has processed what the Dr was saying, 5 hours ago in A&E.  Sami’s concussion from his bike accident is passing, he can leave in an hour or two, but there’s something else;

“The CT scan has shown cell growth in the left ventricle of his brain.” The Junior Dr. tells me earnestly.  Initially, I am relieved; I have been pushing my GP for over a year to get a neurological exam for Sami.  I recently got a referral appointment, but my GP has made it clear I don’t have enough evidence to get very far in the NHS.

“It’s great, we have something concrete to go on, physical evidence.” I reply

“Yes, yes, it’s definitely a good thing,” Dr. Young replies a bit too eagerly, a bit too reassuringly.

With hindsight, I realise we were having the classic it’s-nothing-to-worry-about conversation.  The slow moving cogs of my own brain have clicked through the night and finally worked it out for me, “cell growth in the left ventricle of the brain”, can also be called a brain tumour.  I had a bit of medical training, years ago and I remember random bits and pieces of it.  Cell growth can also be described in terms of degradation of DNA.  So, if you imagine a cell has a tiny spiral of DNA which is repeated in a continuous chain, billions of times.  Each time that cell reproduces (dies and replaces itself), it replicates the entire chain, except it loses one DNA spiral each time.  As the DNA chain shortens in length so we experience aging, our skin slackens, our bones dry out etc.    This is what aging actually is (and why skin creams called “Age Renewal” don’t work at all).  There are only two places you find perfectly replicating DNA chains in the body; the first is in the testes – because to produce a child, it has to be born with a perfectly long DNA chain, otherwise it would be born aged.  The second place is in cancer cells.  They perfectly replicate, they’re sometimes known as “eternal cells”, while all the so-called normal cells around them deteriorate.  They have other functions too, but this is how I understand “cell growth in the left ventricle”.  Cells are definitely not supposed to be spontaneously growing in there.  I sit up the rest of the night, classically terrorizing myself on google.  There is between 5%-15% survival rate at 5 years post treatment – a combination of surgery, chemo and radiation therapy (which leaves lasting detrimental effects on surrounding brain tissue).  Not good.  High fat, vegan diet (surely, a contradiction in terms?) has been shown to be helpful.  He is veggie, so I plan to move us into ultimate vegan health over the next few weeks.

I drive us 5 hours back home the next day, in pieces, hiding my bursts of grief from him behind my sunglasses.  He drivels on about the Tour-de-France for five hours, next to me, oblivious.  I email his teacher, she writes back “That’s not good, let me know if I can do anything to support you.”  I fall a 1000 feet through the floor reading her reply, couldn’t she have written, “We get his all the time at school, it’s perfectly normal in teenagers”.  I leave a message for our GP who’s not in the surgery for another 4 days.  She calls me within two hours and my heart drops another 1000 feet, she’s on it, chasing scans, being incredibly competent.  This is not routine.

I watch my son struggle with basic tasks like walking through doors and answering my questions.   I’d been so frustrated with him before, but now I see his neurological impairment, it explains a lot; his outbursts, his inability to be on time, to function at school or communicate.  When I drop him at school the next day, he says, “I hate being late for school”.  I stifle a laugh; he is late for school pretty much every day.  It’s the school’s and my biggest irritation with him, clearly, something is pressing on his brain, because this statement alone is utter madness.

By 9.30am, I am still in the car but I haven’t even finished school run.  I cancel my clients for the next two weeks and park at the side of road, in teary devastation.  There’s nothing else for it, I have to call Kiki.  I have tried not to call her, because over the years we have shared way more trauma than anyone should.  We are not friends who do coffee, or go shopping, or remember each other’s birthdays anymore.  We might send a text – which invariably sits without a reply. Or, “like” each other’s stuff on Facebook and keep up in vague way, meaning to see each other more than we ever manage.  But if one of us phones, like makes a proper old fashioned voice call, we know it’s serious and we pick up.  Two hours later she is sitting in my garden, fag in manicured fingers, tapping on her phone as I explain.

“So, what are you going to do?”  She asks, pressing “dial” on her phone, as I reply.

“Dunno.  Er, wait till Friday then call the GP back?” I say, making it up on the spot.

“Hi, Can I see a paediatric neurologist this week?” She asks whoever she’s talking to, “Ok, if you don‘t have one, where can I get one?”  She speaks to them as if she’s booking her Waitrose delivery slot.  Within fifteen minutes we have a next day appointment at The Portland Hospital.  I’d say we were booked into see a top Neurologist, but there was a bit of confusion with the phone signal and she accidently booked him in with an Urologist, first time round.  (The amount of laughter we got imagining a Doctor sticking his finger up Sami’s arse, looking for his brain, made it well worth the mistake though).  We agree to meet at the Co-op in Woodstock at 5pm.  She is taking over, she is scooping me up, driving to her boat in London, making appointments, buying food.  She is my knight in shining armour because she knows how to be good in crisis.  She’s had more than a few.

Sami disappears after school for an hour instead of coming home.  “Neurological impairment”, I think as I wait, unable to contact him.  When he finally appears, he explains he’s been at his weekly, Tuesday after-school club.  School call it “Detention”.   I understand better what’s going on with him, all this time he’s not being an annoying little git, he can’t help it, he has “Neurological Impairment”.

At 6.15pm I text Kiki to say we’re in the Co-op, he’s hungry.

“What just standing still, staring into space?”  She texts back immediately; neurological impairment is clearly on her mind too.

“No, not staring.  We’re in the Coop, he’s STARVING.” I reply, checking the autocorrect this time.  I look at the basket he’s been filling; four cheese sandwiches, a stuff crust pizza, a loaf of bread, a jar of Nutella, two bags of Wotsits & a Mars Milkshake, veganism will be more challenging than I thought.  I grab a bottle of red and a big bag of chocolate buttons, (I don’t feel like cooking) and jump in her massive BMW.

Kiki is a godsend.  Years ago we were a vacuous pair, who sat in bikinis by an expensive pool in Thailand, complaining about our fat (they were actually flat) stomachs, wishing our idiot boyfriends would marry us.  We imagined our futures with happy little children, who would do well in school and oh, drive us mad!  Our Bridget Jones years.  Then we grew up.  We lost the boyfriends, traumatically.  We survived emergency births, ectopic pregnancies, seizures, operations, traumatised toddlers and a few bouts of Post-Traumatic Stress each.  Incredibly, we’ve both ended up as single parents with three young children.  Mine, a grief inducing, mid-pregnancy divorce – well, that’s what we thought until her husband dropped dead during her third pregnancy.  Yes, she’s trumped me at every turn over the years.  I am in safe hands because she gets it, she knows exactly what I’m going through and what to do.

We sit in detached luxury, neither of us give a shit about our surroundings.  I have a bottle of red, she has a new packet of Marlborough Lights.  I feel helpless, like both my arms have been amputated.  Sami is behind us, headphones on, watching the Tour-de-France on the iPad.   I take a sleeping pill that someone left behind in my house, a long time ago;   I give her one too.  For the first time I sleep through the night.

I decide to wake her around 11.30am.  I notice my bag of chocolate buttons are lying open, next to her bed, thieving cow.  Sometime after, she stumbles upstairs to the living room, blonde hair looking like a straw mat, and joins Sami and me.  She is covered in brown stains, so I don’t say anything.

“Sleeping pills”, she says, casually lighting up.  “Effing strong aren’t they?  I woke up in the night with my hand stuck in a bag of melted chocolate buttons, but I couldn’t quite get up and wash.  Looks like I’ve shat myself in there and smeared it around the master bedroom.  I’d better text the cleaner and forewarn her, eh?”

“Yeah, better had.” we reply casually, as if this is an everyday problem.  Then she urges Sami to photograph it for Instagram.

Couple of hours later we arrive at Great Portland St and she dumps her beast of a car in a private car park, somone will park it for her.  At The Portland I offer my credit card to the receptionist and Kiki pushes my hand away, blinding the receptionist with the glint of her triple platinum Amex.

“Hey, you’d do it exactly the same for me,” she says.  This is not entirely true, I imagine what me doing it for her would look like.  They’d be a lot more buses & trains, and a Travelodge (in Hackney).  She’d probably have a panic attack discovering there were thousands of people travelling on the Underground, right under her Gucci pumps in Sloane Square.

We sit with the Consultant Neurologist and both stifle school-girl giggles when he says he wants to examine Sami. (At this point Kiki makes a swift exit under the pretext of Sami’s privacy, but I know she’s going for a fag and a Costa).   It’s ok, the physical is all above board, he is a Neurologist, not a Urologist – I checked his badge when we arrived.  Later, I send Sami out, so I can discuss the CT scan, without him knowing about the tumour.

“Have you seen the Radiologist’s report, on the CT scan?” Dr Neuro asks me.

“No, I haven’t been shown a thing.” I reply.

He turns the screen towards me; there is a message from the Radiologist, it lacks any tone of urgency.  It mentions a “density” in the left ventricle, it suggests it’s a shadow of the Medulla Cortex accidently picked up in the scan.  There is no mention of “cell growth” or “possible tumours”, only a recommendation, again without any urgency, that it’s checked with an MRI.

Between us, Dr Neuro and I deduce that Dr Junior, in A&E, saw the scan and interpreted it himself without reading the radiologist’s report.  I no longer feel my son is at risk of cancer, or is dying of a brain tumour.  I am angry at what this has cost us, not even financially, but in human emotion.  How I would have remained in that traumatised state for three, maybe four weeks, if I hadn’t gone privately.  But overall, I am entirely relieved Sami is ok.  The sun is shining, my son is not dying and my life is fine again.  The lift is full, so we watch fondly, as he almost falls down the stairs on our way out.   “Neurological impairment” is no longer an option.

Sami’s CT scan (above).  The Consultant Neurologist was able to confirm, there is absolutely no internal cell growth.