Monthly Archives: February 2019

Everybody Talk Talk

Have you heard the news? I went to “New Grass” first, when I heard the news. It benefits, I think, greatly from context, from following the slow, stark, creeping loneliness of “Taphead”, which can feel like a purgatory before the new rays of sunlight break through. Even played directly, without that journey to it, without earning that pay off, it still sounds more hopeful, more beautiful, than almost anything else I’ve ever heard. “Versed in Christ should strength desert me.” Not theist, but searching, desperately, for the divinity in humanity.

I was in my very early 20s when I ‘discovered’ Talk Talk for myself. Familiar with the big radio moments but never tempted to look beneath, I remember a growing sense of their influence as I researched music online – at I Love Music, and AllMusic, and anywhere else were I could debate and read and discover – that eventually reached critical mass to inspire a purchase. I remember that sense of having found secret directions to something, not knowing what it would sound like, but hoovering up descriptions and explications before I finally took a copy home. Spirit of Eden was, of course, first. I wish I’d been 14 when The Colour Of Spring came out (instead of 7) and a fan, so I could have travelled with them. They were long gone, though, even Mark’s solo album in the past by the time I got there. I wanted to write a book about their music. Pitched a book, even, to a publisher (along with a hundred other people).

Spirit of Eden is, of course, the one that gets the attention, the one that I wanted to write a book about (well, I wanted to write a book about all their music, and use that record as the hook to do so), the one that I wrote an article about (that I was baffled and pleased to see being shared online even today, a lifetime later), but it’s the one I turn to least this last decade or so; The Colour of Spring is just as impressive – maybe more so for being a pop album, with pop songs, that you can sing along to – and so much easier to actually listen to; the darkened room and unwavering attention being increasingly difficult to achieve as you add things to the mix of your life. Mark himself didn’t seem to have much room for (making) music these last 20+ years of family life. And that’s OK.

And then there’s Laughing Stock. In the darkest, loneliest moments of my life, when all other music has felt trivial, inconsequential, I’ve turned to Laughing Stock. It’s been the only thing that felt like it had any profundity left. I’m not really a believer in profundity, as a rule. But sometimes you need it.

They were still, in their way, a pop band, even at the end; “After The Flood” has a chorus, of a sort. They didn’t eschew songwriting structures the way so many people suggest, but rather stretched them out and removed elements until it was difficult to see the pattern in the music for the space around it.

With grim inevitability I am expecting Mark Hollis’ cause of death – if we are ever told anything beyond it being a ‘short illness’ – to be cancer. Because everything is cancer right now.

Everyone talks about the gestalt, but it’s always moments that come to mind. The strings in the coda of “Myrrhman”, so slow, so simple, the most mournful sound I might have ever heard. The slow-motion drum roll at the end of “John Cope”, a b-side (to “I Believe In You”) lost to obscurity but every bit as affecting – maybe more so for its lack of attention – as Spirit of Eden itself.

The squalling, unkempt guitars in “Pictures of Bernadette”, another b-side (“Give It Up”). The plaintive, powerful cry of the titular line in “Why Is It So Hard?”, a song as good as anything from their first three albums but which barely anyone has heard. The choir – of course – in “I Believe In You”, and that mellifluous rhythm beneath it. So many others. So many.

Rest in peace, Mark Hollis. “Lifted up / reflected in returning love you sing” indeed.

World Cancer Day / Casper’s birthday

So today, 4th February, is World Cancer Day. Em (and some friends) spent two hours in Morrison’s yesterday with a CLIC Sargent bucket and t-shirt. It feels like a significant date.

What feels even more significant is the fact that it’s Casper’s first birthday tomorrow. Whilst it’s not been a constant thought, it’s not an exaggeration to say that we didn’t always know we’d get here over the last seven months. We also don’t know, for sure, how many more birthdays he will have. I hope a lot – as many as anyone else who lives an average, boring, normal, healthy life – but I expect nothing. One tries not to dwell on these thoughts and feelings – and I’m pretty good at not dwelling – but they do cross your mind. And once they’ve crossed it, they leave a stain.

But we have got here, and, right now, Casper remains well. The gene therapy is keeping his symptoms completely at bay. His bloods are good. His calcium levels have stabilised at a normal level after those early high readings. There is no sign of his rash. He is weaning well (albeit not quite as well as Nora did), he has started crawling, and this morning at softplay he was considerably more mobile than he’s suggested he could be before. Boys, eh?

He is, to all intents and purposes, a normal baby right now, and our lives are, likewise, as normal as they can be.

There have been blips. A brief temperature the week before last meant a night in hospital – the first since early November – for what turned out to be pretty much nothing; a standard, minor baby virus. He had a rash for a couple of days afterwards. But it was nothing.

As it’s World Cancer Day, I thought now would be a good time to reflect on how we got to his diagnosis.

Almost from birth, Casper had baby acne, which we thought (almost) nothing of. Eventually it went away, but it’s fair to say he was a spotty baby. He was also sicky, vomiting far more than Nora ever did. Too much? How can you tell? When your first baby doesn’t really vomit at all, any increase with a second baby feels like too much. I remember friends’ babies with reflux basically constantly leaking out of their mouths. He wasn’t that bad, but still…

There was nappy rash, too; again, more than Nora ever had. Enough to worry us. Health visitors, doctors etcetera suggested it was nothing more than a touch of eczema. Nora has a bit of eczema sometimes, usually after swimming. We keep it at bay with a decent moisturiser. Neither Em nor I have ever had eczema. It was suggested that Em should go dairy free in case this was a cause. She did. Did it seem like it helped? Not significantly.

He was a big baby – over 10 pounds – and it was hot, really hot, from early May last year. It was difficult to keep him dry beneath his arms, in his neck, and round his nappy area during early summer. He got sweaty, it got red and angry. Again, health visitors and doctors suggested it was nothing more than eczema. Keep him dry, try an emollient, here’s some antibiotics. It’s nothing serious.

Em was always worried about Casper. More so than Nora. Nora never caused us to worry, not about her health. She seemed invulnerable. She said he felt temporary. I said – in my positive, everything-is-ok way – that he was fine. That everything would be fine. He’s just a different baby. And he is. He’s more dramatic than Nora. More easily upset. But he also has cancer. How much of his nature is him, and how much is his disease?

We went on holiday to France in early July. The day before we got the ferry we saw the doctor; is it OK to travel? They suggested it was fine, that the rash – almost certainly infected eczema – was getting better. It wasn’t.

In France it was as hot as it had been at home; a proper heatwave. On the first morning there we tried to bathe him and he screamed when the water touched his skin. We took him to the nearest hospital – 25 minutes drive away – that had a good paediatric ward. He was admitted. My French is good enough to order food and drink. Medical situations? No thank you. “Erpez?”What? “Erpez.” Herpes? That’s really not good in babies. One nurse suggested we just weren’t keeping him clean enough. Which makes you feel like you’re failing as a parent. Anti-viral drugs, antibiotics, infected eczema, getting better. Nora and I sought refuge in the campsite pool, in a roadside McDonald’s halfway between the campsite and the hospital, as I tried to give her the holiday we’d promised her. He was out after three days. Frank lent us his parents’ house so we could stay somewhere bigger, easier to manage a (slightly) poorly baby in a heatwave (we’d been in a caravan-chalet thing).

Got home, changed doctor, saw him for holiday follow-up on the Monday in the week after we got back. Then again on the Friday, because Casper was vomiting fluorescent yellow stuff; a side effect of all the drugs in France, perhaps. Keep an eye on him, get in touch if anything changes. Who worries about a baby being sick? Babies vomit; babies get rashes. It’s not unusual. I was away at a conference. That night he started vomiting again, and didn’t stop; every time something hit his stomach, he brought it back up. All night. More and worse than his regular sickiness. More than just a baby being sick. More than just a baby with a rash.

We called 111 at 6am; they referred us to Devon Doctors, who referred us to A&E. “I’m not concerned with the vomiting, but this rash…” said the consultant in the Paediatric Assessment Unit. He just happened to be a paediatric oncologist. He’s now our paediatric oncologist. One of them. Simon.

Langerhan’s Cell Histiocytosis was mentioned as a possibility that Saturday morning, almost straight away. An “auto immune disease”. “Highly treatable, but it does need chemotherapy”. A clue as to the fact that it is, essentially, cancer.

He was transferred to Bristol overnight Monday into Tuesday. Nora and I were given a room in a CLIC Sargent house in Bristol near the hospital. Back and forth up the M5.

Test after test after test. He was formally diagnosed on the Wednesday evening. More tests. A general anaesthetic for an MRI scan, and 15 hours later another general anaesthetic for a Hickman line to be inserted and biopsies to be taken. A whirlwind. Too much to take in. Social workers, psychologists, oncology nurses.

And that, roughly, is how we got to where we were when I started writing here again in August. Seven months with cancer. Chaos, pain, worry, anxiety, fear, joy, hope, disappointment, grief, confusion, fear, fear. Fear. Life with cancer. Your baby with cancer.