Who are we if we’re not that cancer family?

We took part in a social bike ride on Saturday, jointly organised by three local community initiatives (Ride On, FreeMoovement, and Exeter Cycling Campaign). We cycled from Exeter quay to Turf Locks, Em pulling Casper in the trailer, and Nora and me each on our own bikes. We arrived last of the group of 25+ people, but everyone was incredibly impressed that Nora (still only 4 years old, remember) rode all the way herself – it’s more than 7 miles from our house to Turf!

(Afterwards I cycled home fast with Casper, jumped in the car and then fetched Em and Nora, whose little legs were understandably knackered – she made it halfway home though.)

When we got to Turf we had a spot of lunch and chatted to the people who’d ridden with us (the ‘social’ bit was the main point of the ride). I got talking to a guy called Andy who, it turned out, knows Ian, who used to be my boss and who recently rode the Nello and sought sponsorship not just for Force but also for CLIC Sargent in Casper’s name.

“This is Casper, who Ian was raising money for.”

Then I spotted Simon, Casper’s paediatric oncologist (our paediatric oncologist, I should say, because when your child has cancer, your whole family ‘has’ cancer), who had also ridden out to Turf for a spot of lunch with his daughter. Not really surprising – it was a lovely day, Simon’s a triathlete (the lunatic), and there are few nicer places to cycle to for a sandwich and a cider shandy than Turf Locks on a sunny July Saturday.

“And there’s Casper’s oncologist.”

Cancer conversation ensued. It gets everywhere.

(Though not with Simon; that wouldn’t be fair. We did talk a bit about bikes, though.)

Casper had only seen Simon two days before, when two significant things happened.

Firstly, Simon referred Casper to have his port-a-catheter removed. The port-a-catheter is, for those who don’t know, a button under his chest that looks like a third nipple, with a tube that goes from the back of it down a vein in his neck and into his heart. It’s how chemo was administered, and how bloods have been taken. He’s not had chemo in nearly nine months now, and is big enough for bloods to be taken from his arm. The port is an infection risk, his current meds are administered orally, so out it comes.

Secondly, Simon has suggested that he only needs to see Casper every month now (appointments are currently every fortnight). My understanding is that typically the paediatric oncology team meet people, see them intensively for a period of months (or years) while treatment is administered, and then say goodbye and fare well once they’re OK, seeing them perhaps once a year or so to check they’re still OK afterwards.

Casper is different – this is more like managing a longterm chronic condition than an acute cancer now, and we’re shifting to that pattern of treatment and monitoring. Casper is ready to not be seen so often, to be as close to a normal boy as possible.

The question is, are we ready?

If you’ve ever dealt with chronic depression, you’ll know that you can cling to it as if it was an intrinsic part of your character, your personality, rather than a disease that affects the shape of your character and personality. “Who will I be if I’m not depressed?” “What do I look like, sound like, and act like without depression?” You may hate this thing that’s affecting you, it may make you feel awful and unable to deal with the world, but it can become very, very hard to relinquish. I imagine bad relationships, and various other patterns of negative behaviour, are very similar.

Because even awful things can become routine, and by becoming routine become, somehow, sort of comfortable, just through familiarity and repetition. Very few things are 100% bad; we’ve received a lot of love and support from the medical team, and removing that (even if not fully) feels scary, for instance.

It’s the same with Casper’s cancer; who will Em be if she’s not taking him to hospital all the time? Who will we be as a family? We didn’t want to be “that cancer family” when this began, and we still don’t, but… We also are that cancer family, and the repercussions of this last a lot longer than the diagnosis or initial treatment. Casper is 18 months old next week – we’ve barely existed as a family of four without cancer being involved. Despite the frequency of appointments dropping and the prospect of his port being removed soon, we are not finished with cancer and cancer is not finished with us.

In other news, Neil at work is cycling LEJOG next week, and raising money for a charity that research the family of diseases that Casper is affected by. You should sponsor him.

12 months of childhood cancer

Depending how you look at it (Christmas or Easter, essentially) either today or tomorrow is 12 months since this whole cancer thing started. Tomorrow by date, today by day. It will always have happened on the Saturday after Em’s birthday, in the morning, just hours after I got home from a conference. Those are the signifiers burnt into my mind. The precise date almost doesn’t matter. Easter Sunday. Cancer Saturday.

Or did it start on that holiday to Brittany, those days in a French hospital? Or when he had chickenpox at three months old? Or when he was in the womb? Or at some other point? We will never, and can never, know. But today (or tomorrow) is the day when we met Simon the paediatric oncologist for the first time, and he said “it might be Langerhan’s Cell Histiocytosis”, and this whole fucking elongated, awful, frightening, boring, anxious nightmare began properly.

I could have requested his hospital notes for this post, totted up all the blood transfusions and X-rays and nights in hospital, reduced everything to brutal statistics (30+ transfusions of various blood products; 50+ nights in hospital; 12 weeks of chemotherapy), but as numbing and horrific as those numbers are, they don’t tell the full story. Nothing can.

Three weeks ago we managed out first family holiday abroad since this that trip to France. A week in Portugal, in a villa belonging to Em’s aunt and uncle. Our neighbour, who is Portuguese and a medical researcher, kindly translated the hospital’s letter for us, in case the worst happened. It didn’t. The worst thing about the holiday was managing two small children in a hot and unfamiliar environment. It was pleasantly uneventful.

Life is mostly uneventful now, if not always pleasantly so, and while somehow managing to still be busy. We camped last weekend – one night in Woolacombe – a dry-run for when we go to Green Man Festival next month. It was also pleasantly uneventful. We argued, of course, stressed, said we should just sack it off and go home before the tent was even up, because, even though life is “normal” now compared to the whirlwind of diagnosis and chemo and surgical procedures to install valves and tubes that can pump drugs into and extract blood directly from my baby’s tiny heart, life is not ‘normal’, and never will be again. “It’ll never happen to us” was a default setting. The worst thing imaginable happened. Why the fuck wouldn’t it happen again? We know now that it can. Every blemish, every cough, every dip in appetite, every odd step; is the cancer back? Has the gene inhibitor stopped working?

It’s a long time since I’ve had that weird, vertiginous sensation that this is all a shitty, horrible film about cancer that I’m stuck watching, or a dream, or someone else’s life that I’ve somehow been zapped into like Sam in Quantum Leap, and had that desperate, irrational hope that someone ineffable, somewhere, will snap their fingers and this will all be over. I had that feeling a lot in the early days, in those first few weeks. Every so often – only every few months, probably – it comes back, that sense of the world tilting and coming up to meet you as you realise and acknowledge, again, that your baby has cancer.

“He’s NOT a baby daddy; he’s a toddler now.”

There was a guy, with a homemade banner about god, preaching on the High Street today, telling us that only god can save us from hell and damnation, and I wanted to slap him, grab him by the shirt, and scream in his face that I’ve been there, that it’s here now, that eternal damnation is just that – eternal, low level, ambient somehow, a permanent disquiet that soaks into your bones, like lenses of glasses scratched so much that you barely notice, most of the time, that the world is scarred and blurred and unclear in ways it never used to be. And then you do notice, and you remember that it’s like this forever, and you can never escape. I wanted to ask him how he could justify his god having afflicted my absolutely innocent baby with cancer when he’d barely had chance to be alive. I wanted to name all the other kids with cancer who we’d met, name them and their cancers, the neuroblastomas and the lymphomas and all the others, and ask him how he squares this with his faith. But I just walked past, because what good would it do? I don’t believe in god. Christian values I’m good with. Love thy neighbour, etc. Do unto others. The meek will inherit the earth. I just don’t see our political leaders acting them out much. I do believe that we invented ‘god’ as a concept as a way of explaining love.

Casper is, as ever, oblivious to this, except when we give him his meds. We started a new delivery method this week; still via syringe into his mouth, but dissolved tablets rather than powder. It doesn’t taste as good; he used to actively like the last lot; now he fights you. The fear that he’ll spit it out, not get the full dose, and that the cancer will come back is there at every administration.

Casper is also, it must be said, an idiot. He plays the fool almost constantly, doing things to get a laugh from his sister or from us; plate on head, funny faces, waving his arms and making weird noises, then laughing, laughing, laughing. There is a glint in his eyes – Em has said this almost since he was born – that means mischief, which Nora never had. As if he’s not put us through enough already. And good grief does he love to touch bikes and cars, especially wheels and pedals. We went in the bike shop today to pick up my bike after getting it fixed, and his eyes went like dinner plates.

How oblivious is he really? He’s been unsettled tonight; I’ve had to settle him three or four times between 7:30pm and 10pm. Has he picked up on us being slightly unsettled? What will he remember of this in five years time? How will he explain his scars to girlfriends or boyfriends when he’s older? Will there be emotional wounds we can’t see now?

In a few weeks he’ll start nursery, at the same time as Nora starts school and Em goes back to work. His nursery is on campus – the same one Nora went to, except he’ll be the first cohort in their new building. The staff all know him and his story already. I take him into work to show him off so often; look how alive he is! Look how he can walk, and babble, and smile! When your baby has cancer you kind of convince yourself that he’ll never do the normal developmental things; he’ll never walk, he’ll never drink from a cup, he’ll never manage solid food, he’ll never… be more than a baby. Be a toddler, or a little boy, or a child. Your brain freezes time in the present, because the future could be unimaginably bad, so you can’t imagine it at all.

The last 12 months have been horrific. I am, at heart, a positive person; energetic, talkative, about solutions and newness and change – not glass half empty or even glass half full, but rather “let’s go to the tap together and fill the glass and talk about making sure it’s always full in the future!” – but I’ve been as close to suicide this year as I can imagine I ever will be. Not just suicide; in the darkest moments I’ve wanted to end it not just for me but for all four of us, because my family is the most important thing in my life, and the thought of it splintering, collapsing, decaying and disintegrating is my biggest fear, my strongest trigger, the one thing I cannot cope with.

But I got through that, and now, mostly, things are OK, and I am OK, and we are OK. To look at us in the street you’d never know, most of the time. Em has entered the London Marathon for CLIC Sargent next year. We’re making progress on getting the house how we want it. I’m beginning to care about work again, sometimes. We’ve had, so far, mostly, a nice family summer – Portugal and camping and bike rides and eating in the garden. But it’s all tainted, all stained, all a little spoilt, like when you buy something new and you scratch it almost straight away and even if you can polish the scratch away you know it happened, that it’s there underneath, and no matter how many people tell you “but you know it’s yours now” it doesn’t matter because you just wanted to have whateveritis perfect, unscratched, for just a little while.

We watched Arrival at some point over Christmas, despite several people having told us explicitly not to. If you haven’t seen it, the plot is… relevant to out recent experiences. At the end I cried – great big gobby tears that shake your whole being, like a damn is breaking and concrete is being pulverised by the pressure of the built-up water behind it. It was one of the most cathartic things I’ve ever experienced. I am OK, now, mostly. But I think I want to watch Arrival again soon, just to purge. Break that damn again. Feel the ground rise up. We are in this for a long time. My son has cancer.

My son has cancer.

My son! He has cancer.

My son.

My daughter.

My wife.

Me.

Our family has cancer. It’s in our son. It’s turned off right now, but it hasn’t left properly yet.

Our family has had cancer for a year.