Unite for Reuben.
23 June 2020
Scene: the ITU at the adorable neurological centre, Haywards Heath, back in 2015. 22nd of May, to be precise. I’m stirring slightly on my bed, one eye swollen shut, bandages partially over both ears, and staples already itching in my scalp. I’m so tired. And grumpy. The anaesthesia is still heavy in my body, and I can almost feel my brain groggily mending itself after the latest invasion.
Despite the tiredness, and infinite miserable energy pouring out of me, this stranger manages to keep me talking for a good few minutes before I happily pass out again. Then before I know it, I’m on the ward and the nurses are bringing me cups of tea and asking me if I’ve opened my bowels yet. It’s so funny, I don’t recall my time in the ITU after either of my brain ops – in fact, I once said to the parents ‘oh, I was only in there a couple of hours’, to which they replied ‘Grace, you were in there for two days!’ – but I remember that little flash of goofy cheer. I tell my family about the strange man who insisted on chatting with me while I was trying to black out peacefully. I start asking the nurses how he’s doing, once I remember his name – Graham. And then that goofball visits me on the ward, with his fiancee, and I find out they have a one-year-old son, too. I also learn that he’d been diagnosed and put in for surgery roughly six months after he’d had a seizure on his motorbike, which made him crash on a local roundabout. He and I become friends on Facey B, and stay in touch after we both go home to recover.
We got our histology results around the same time, a couple of weeks after our ops. (Don’t test me on that though, my memories of that time are a little compromised, to put it lightly.) I got mine first, and it was the same as the year before; low grade in a weird place, misbehaving cysts, etc. etc. Then on Grandma Latter’s birthday, while we were sitting in the garden having cake and bevs to celebrate her (she was in our local hospital at the time, mere hours away from a peaceful departure) I got a message from Graham to say he’d had his results back. Higher grade than they expected, very aggressive… two or three years. I remember having a proper cry then, on my blanket in the garden with a slice of cake in my lap. I then read the message to the family and declared ‘it’s just not fair.’ Because it wasn’t. He had a one-year-old son, a lovely fiancee, a job in place, and a whole future he’d just started to step into. How can it all be taken away, just like that? Why would the universe choose him, of all people, to go through this?
I’m happy to say that Graham is still with us, smashing the original prognosis, thanks to treatments – and undoubtedly, that unyielding cheer and dark humour. He and Amber married in May 2016, and by all accounts had a delightful honeymoon. Little Reuben is now five years old. Life is rolling on.
But unfortunately, my pal is not out of the woods just yet. He found out in February this year that his brain bugger is back. My family (and the rest of our Strictly Come Dancing group chat) didn’t find out about this until recently. I mean, what can you say? I guess it’s not surprising that it’s reappeared, and we can only hope that more treatment (which will be happening at my beloved Marsden, in Sutton) will sort it out and give him more time.
And that’s not the end of the sh*t he and Amber are facing now.
Their lovely Reuben has recently been diagnosed with Duchenne Muscular Dystrophy, a muscle-wasting disease that will affect him massively growing up, and ultimately shorten his life. Realistically speaking, he will be lucky to make it to 30. Those are the hard, horrible facts.
Duchenne Muscular Dystrophy is incurable. There are charities for it, such as Duchenne UK and their partner Joining Jack, who are doing their best to help those who are living with it, and a few celebrities support these charities, too. But unfortunately the disease is not getting much publicity and research, because it’s too rare. (Not unlike brain tumours, I would add grumpily.)
The Wood family have had to face some of the hardest things anyone can, in recent years. But they have the toughest spirits, and unwavering cheer. When Amber slipped a disc last winter, they would still come round for Strictly parties with us – we propped her up with pillows, and she didn’t complain once. Graham’s Facebook statuses are the kind that make you cover your mouth in horror while shrieking with laughter (my favourite one was when he said he was having to wait two weeks for a GP appointment, and tacked on ‘it’s fine, not like I’m dying or anything’). Reuben is a total sweetheart, and what he lacks in muscle and energy (he can only walk for about 20 minutes before he gets tired) he makes up for in cheekiness, and the most genuine smiles.
While I’m sure this badass family could make it through this with only their natural cheer and determination, they will of course need financial support too. That’s why Graham and Amber have created their #unite4reuben Instagram account and fundraiser; please check out the JustGiving page and read their story on there, because it will tell you everything you need to know about the costs of raising a child with an incurable disease. If you can’t spare any pennies right now to donate (which is totally understandable; these are weird times and a lot of folks, myself included, are only just scraping by on furlough) then please share the link around. I’ve tweeted about it, and won’t stop tweeting about it until they’ve reached their goal. I’ve already had people unfollow me because of how much I’ve been yelling about it – good riddance to ‘em.
My family are working on a plan for an epic fundraising event, which I will be announcing on here and my social media platforms once it’s all sorted. Keep an eye out for that. All I’ll say for now is – if any readers who run their own creative businesses, have some good connections or perhaps work at companies that help with causes like this, could slip into my DMs on Instagram, Twitter, even my Facebook page, that would be much appreciated.
The universe has messed with the wrong people. Let’s do what we can to help them, shall we?
Six years since.
6 June 2020 • the tumour tale
My neurosurgeon was shocked when I told him that it's been six years since my first op. His eyes widened above the paper mask. He said he couldn’t believe it had been that long, and rolled his eyes in that ‘how old am I?’ kind of way – like I do when one of my younger colleagues reminds me that there’s an age gap of almost a decade between us, and they were playing ‘Moves Like Jagger’ in a Year 7 music class around the time I was drunkenly bopping to it on the dance floor during Freshers Week.
Yep. Six years, folks. As I write this, it’s six years since I tried to snuggle down in my private room the night before facing the biggest and scariest thing I’d ever encountered; it was a warm night, I had an arrow drawn on my neck in pink marker pen, and I spent far too long simply staring at the cheap print on the wall at the end of my bed, over my pale legs and koala socks. A woman in a big hat, standing in a poppy field. A couple of years later I went to Majorca with Dad and Grandad, and was truly spooked when I saw the exact same print hanging on the wall outside my hotel room.
Six years since the awkward, cold shower in the wet room down the hall, at 7:30am. Then they got me on a bed, and wheeled me down the corridor into the theatre. It all felt very dramatic. I cried a lot when I had to say goodbye to my family and be taken behind the heavy white double doors. The tears stopped quickly though when I was suddenly in the next room with the anaesthetists – one of whom had the surname ‘Bacon’, which cracked me up. I remember thinking I had the easiest job, because I was going to be asleep the whole way through. I didn’t have to do any work. I also didn’t have to wait around, and wait for news.
Bacon asked me where I was from. He’d noticed I had ‘a bit of an accent’. I explained that I’m half Australian, and he promptly asked me what my favourite beach spot Down Under is. I surprised myself; I immediately said ‘Digger’s Beach. We have family friends who live there, it’s so beautiful, and peaceful’… or something like that. I passed out at some point there. I woke up ten hours later, my head full of fog, and actually felt embarrassed that I’d fallen asleep while talking. I had to remind myself that they’re probably used to it. I’ve since learned that they keep you talking as they put you to sleep, although I am still not sure why. My most recent operation, the reconstruction in 2018, was the best cut off conversation; one of the guys (who had a boring surname, I reckon, as I don’t remember it) asked how I felt as the drugs went in, and I tried to describe the sensation of the ceiling spinning above my head, like it was on a rolling conveyor belt. ‘It’s like I’m drunk!’ I laughed. He then replied ‘ahh, too many wines eh?’
I scoffed, and said ‘wine? More like whisky! Or gin...’ and then I blacked out. Well actually, I don’t know if it’s a blackout. I never remember the actual ‘going under’ moment. I just remember coming round, in another room, and bursting into tears, every single time. The last time, a male nurse had to give me a cuddle. I pulled him in and wailed against his chest. He gave me a doll to cheer me up – a mini version of him, apparently – but then by the time he came to collect it, a day or so later when I was on the ward with the anaesthesia slowly leaving my body, I didn’t quite remember him and was shocked to see this teeny doll on my bedside table. ‘Where did that come from!?’ I yelped.
Anyway, I digress. I have too many hospital stories, clearly. Recently, I even drew up a list of my top 10 hospitals I’ve been treated in (Haywards Heath in the top spot, closely followed by the Marsden in Sutton… I won’t bore you with it all, but just FYI, Brighton is right at the bottom. Beware!).
Okay. Back to Hurstwood Park, in 2014…
I had the best treatment in that little old place, both times I went in for surgery. Yesterday I wandered into its beautiful garden just before my MRI appointment, something I hadn’t done before despite revisiting the place many times over the past six years. I sat on the bench, the same one I’d sat on with my family and friends, after my second op. I looked over at the bench I’d sat on when one of my favourite schoolteachers called me to check in, not long after my first op. I then walked over to the glass conservatory, and let myself think back to the time we all sat in there with a cake, celebrating Grandma Latter’s birthday; I’d signed her card after months of not being able to hand write. I'd also sat in there before my second operation, reading a book, none of the words really sinking in.
And then, because clearly I wasn’t weeping hard enough, I peered through the windows into the (now unused) women’s ward. I took a photo of my bed, the one right at the end against the wall, under the loudly ticking clock. I remembered the time my surgeon visited after the first op, and dared me to get up and walk; the old ladies in the beds next to me, the ones who kept me awake every night with their snoring and manic mumbling, cheering me on as I walked myself to the toilet dragging my wobbly IV contraption along with me.
I feel like I’m very lucky to be able to look back on these traumatic times almost… fondly? Don’t get me wrong, at the time it was terrifying and uncomfortable and I wanted more than anything to go home and to find a way to get myself a new, more functional brain. I never wished it would happen to someone else instead of me, though. I actually liked the idea that I was taking one for the team; that this horror wouldn’t happen to anyone else if it happened to me. Blah blah blah…
But it’s not just luck. I have had the most incredible journey, and the best treatment imaginable (and all on the NHS, mind you). My surgeon said yesterday that he’s happy to make my MRIs and check ups an annual thing from now (!!) but he emphasised that if at any point in the coming year I feel anxious or ‘twitchy’ (not sure if he meant literally when he said that… it would be appropriate, to be fair) I can call his secretary and request a check up. And I know that if I did do that, I’d have a scan and consultation appointment made for me within 24 hours, easy. That’s the level of care I get. I know not everyone gets that pleasant experience, and that’s so unfair. Hopefully, someday, it will change.
Going back a moment there – yep, I’m having annual check ups from now on. One per year. I used to have a scan and consultation every three months, then it was pushed back to every six, and now here we are. It’s weird. I’m a bit sad about it, if truth be told; I love going for my scans, having a happy, zen doze in the MRI tube, and then seeing one of my favourite humans not long after to peer at a screen with the inside of my head on it, and have a catch up like we’re friends meeting for a long overdue coffee date. I always keep him updated on what I’m doing for work, how my writing is going, and I tend to throw in whatever is on my mind at that moment in time; yesterday I casually mentioned that I have a boyfriend, and that I’m going to a BLM protest over the weekend. I’ll be sad not to have another one of these meetings for a full year, but I’m trying to focus on how exciting it is that I have got to this point. My lil buddy is behaving himself now. He’s not a blip any more, or a blob, or a bugger. We’re on good terms now – let’s hope it stays that way.
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