Before I start writing the main bit of this blog entry I should probably start with a couple of disclaimers. Yeah. It’s that sort of blog entry. Sorry.
- Disclaimer 1) This is a blog written by me about my experiences and my personal feelings (or maybe my lack of them). Perhaps I don’t deal with things in the same way as you, I don’t know. But what I’d like you to bear in mind is that this is just a glimpse into how I coped with what could have been, and probably was, a life-changing experience. It’s not written for any other purpose than it’s an experience that I’d like to share with you because – well – parts of it are quite entertaining, I think.
- Disclaimer 2) There is no disclaimer 2. One was too many already.
So – where to start?
Perhaps I should set the scene. It was 1999. We were all partying, just like Prince had predicted. I was still living with my Mum and Dad and commuting to University each day. I worked at a supermarket and had rather absurd floppy hair. If you’re under the age of 25, here’s a history lesson for you – it was called having ‘curtains’ and, somewhat implausibly, it was perfectly acceptable at the time. I had a long-term girlfriend (we’d been together a few years) and I was, for the most part, very happy. That’s the scene set. Done. Now – onto the good bit…
Well I say ‘good’…
I had a lump on my neck. I knew this because a) I could see it/feel it and b) My brother had been pointing at it and laughing. Brothers do that kind of thing.
The lump in all its glory. Also – the floppy hair.
I’d recently been scratched by our cat, and the bit where it’d scratched me had swollen up a bit. As a 19 year-old floppy-haired male student, I wasn’t the sort of person to seek a Doctor’s appointment for stuff like that. I wasn’t the sort of person to seek a Doctor’s appointment for anything, really. (Note: I am now, funnily enough).
My Mum, however, insisted that I went to get it checked out. After all – it could be something ‘sinister’. Cue teenage rolling of eyes. Mums, eh? What are they like?
I clearly remember swanning into the doctor’s surgery and answering the question “How can I help you?” with the immortal words “I think I’ve got lumpy neck disease”. I probably thought it was quite funny and the doctor probably thought I was a bit of a knob. Nevertheless, he examined me, and after I’d told him about the cat scratch, decided that it might be ‘cat scratch fever’. Over the years I’d had my fair share of illnesses – most things, in fact, but I’d never had cat scratch fever. In fact, all I knew about it was that it was an album by Ted Nugent (I’d seen it in second hand CD shops, whilst scouring the ‘N’ section for Nirvana bootlegs). Cat scratch fever was a great illness to have. It sounded kinda cool and funky and – well – I wasn’t ill, just a bit lumpy. Oh – and I’d lost a bit of weight recently. But mainly lumpy.
The doctor took some blood tests and sent me on my way.
I returned for the results a week or so later (with my Mum in tow, as I remember it). The doctor said that the results were inconclusive and that it was probably a cyst. The results indicated that it wasn’t anything sinister like Hodgkin’s disease – so it was probably just a harmless old cyst, sitting there on my neck. He booked me in for a CAT scan to confirm it and off I tootled, with a spring in my step and a song in my heart.
The CAT scan was weird. I remember a few things – notably that they used a machine to administer the…stuff… into your veins – and that before the scan they managed to squirt some of it onto my shoe. I never managed to get rid of the mark it left. The second thing I remember was the very strange sensation that the ‘stuff’ gave. It made my… er… orifices get warm. Uncomfortably warm. Notably the downstairs, rear orifice. Nobody ever mentions the weird, ‘warm anus sensation’ when they have a CAT scan. Maybe it was just me. Perhaps it was just nerves.
They took the scan and I came out of the whirring torpedo-tube of a machine. I could see them behind the glass panel, looking all serious and debating something, whilst pointing at a screen. Eventually, they said they’d like to do another scan. Fine. Whatever. I didn’t have to be anywhere. So they scanned me again. If/when they make a movie of my life – that scene will be shown with mournful music – possibly in slow-motion. The doctors giving each other stern looks and shaking their heads.
I wasn’t especially anxious about the results because the doctor had told me that it was a cyst and the scans would just confirm that. What’s to worry about? I had pubs to visit, bottles of Smirnoff Mule to drink (ask your parents, kids) and general larking-about to do. I didn’t have time to worry about things.
So when I went back for the results (with my Mum again – though I should point out that she didn’t accompany me everywhere when I was 19/20). We sat down and the Doctor had a serious look about him. They scan showed that it wasn’t a cyst. It was looking like something worse than that. I don’t remember the full conversation, but I do remember him saying that it was looking like Hodgkin’s disease. And I remember my Mum crying.
But – wait a minute – he’d said it wasn’t Hodgkin’s disease! And – oh yeah – what is Hodgkin’s disease anyway?
There was a good chance that it was curable, apparently, and I had to have a biopsy, so they could confirm it. A few days later (due to the wonders of private healthcare) I was lying there, about to have a bit chopped out of my neck. It had to be done under general anaesthetic, so I was in for a while. I ‘d met the surgeon – a nice chap* and he’d talked me through what they were going to do. The details are hazy, but essentially they wanted to cut a chunk out of the lump, dip it in some crazy chemical solution, it’d turn a funny colour and that would prove, irrefutably, that I had Hodgkin’s disease. OK. Cool. Get chopping.
The things I remember about this whole process are:
- Waking up after the operation and ordering a bacon sandwich. It came with cress on the side of the plate. Very la-di-da.
- The smell of general anaesthetic. Ugh. It stank. I sweated the stuff out for days afterwards. Not a nice experience.
- The massive but relatively neat little slice in my neck. Nicely done.
- The surgeon looking apologetic and telling me that they’d taken the wrong bit and needed to do the whole operation again.
I think the last one was probably the most significant in this story. Unless you came here looking for bacon sandwich presentation tips.
So I went in again. More general anaesthetic – more stink – and almost certainly more bacon sandwiches. Because the previous operation was so recent they pretty much just opened my neck up and rummaged around without having to do much, I’d imagine. Like opening an easy-access service panel. Either way, when I awoke I had massive blue stiches in my neck and a tube attached to a ‘drain’ coming out of it. Not a household drain. I wasn’t attached to the sewerage system. It was a little plastic pot full of my blood that I had to lug around with me.
I went home, looking like an extra from a cheaply produced zombie movie. The stitches they’d used were blue. And BIG. The whole wound was probably three – maybe four – inches across. It wasn’t subtle. To enable me to have showers without accidentally filling up my neck cavity with water, they’d put a kind of plastic cling-film stuff over it and cut around the outline. Remember that stuff you used to cover your school books with? That. The result was that it looked a lot like this:
Only less convincing.
It didn’t take more than a few days of lounging around and being pampered before I was back on my feet. I remember the first time I went out with my new Frankenstein’s-monster-style neck I was a bit paranoid – I wore a top that covered it over so people wouldn’t see. Every subsequent time I went out I didn’t bother. You see far worse things out and about.
I also vividly remember an incident where I had gone for a wander around town with my friend. It was April Fool’s Day (2000). He’d popped into McDonald’s to use their toilets (an act which I do not endorse, I should point out) and I was stood outside waiting for him. A young teenage girl approached me – probably not more than 14 or so – pointed at my neck-scar – still blood-encrusted and gruesome – and said “that’s not real”. She said it accusatorially. Like I was waltzing around with a fake scar on in order to impress people. I assured her that it wasn’t fake – that it was absolutely real and that I’d just got out of hospital the previous week, and she barked at me – like a feral Vicky Pollard – “I DON’T BELIEVE YOU” before scampering off to smoke, drink and have unprotected sex with Wayne, I expect. There’s a part of me that admires her audacity. There’s a part of me that thinks she needs to learn some bloody manners. And there’s a part of me that finds the whole thing rather amusing.
– Cut back to the hospital –
I’d been assigned a haematologist (nice chap) and an oncologist (nice chap) and – I think there was someone else (probably a nice chap, too), but to be honest it’s something of a blur. Yes – they’d found it to be Hodgkin’s disease as expected – in my neck and another bit under my left armpit – and now they just needed to work out what to do about it. I’d been informed that the recovery rate in cases like mine was very high – 90% or so, I think it was, so I wasn’t worried at all. My view is that you’ve got to trust these people when they say that. Initial conversations were had about the treatment required – in my case it would probably just be radiotherapy. No need for chemotherapy. That was a good thing. We’ve all heard how harrowing chemotherapy can be. That didn’t sound like a lot of fun.
The next consultation went something along the lines of:
“So – you’ll start your chemotherapy on Monday and your radiotherapy a couple of weeks later…”
“But I didn’t think I was having chemo…”
“Yes. You are.”
“Ok. Right…er… Will I lose my eyebrows? I don’t want to lose my eyebrows. People without eyebrows look WEIRD”.
“No, you shouldn’t lose much of your hair – you’ll just go a bit thin on top- and you won’t lose your eyebrows.”
“OK. Cool. See you Monday.”
And that was it. I popped back to Uni to tell them that I wasn’t going back. I realised years later that I never actually told any of the people I used to chat to in lectures. I didn’t have a whole load of friends at Uni, but I certainly had acquaintances. And one day I just didn’t turn up. I wonder if they ever noticed…
I told work that I’d probably require a few months off. They were really supportive. They had a whip-round and bought me a 24 pack of Fosters and South-Park ‘Bigger, Longer, Uncut’ on VHS video. Still one of my favourite films of all time. That was a result.
And then I started on the chemo- and radio-therapy. As you can probably imagine, chemotherapy is not a bundle of laughs. I’d pop to the hospital for a couple of hours every few days (I think it was) and sit with a drip in, while they administered a cocktail of multi-coloured drugs. I have no idea what any of them were, or what any of them did, except one – a bright red liquid – turned my wee fluorescent orange. It was probably just included to cheer me up.
I spent a lot of hours at home lying on the sofa, drinking tropical fruit juice, vomiting and playing Tony Hawks 2 on the PlayStation. What a game. I had to take a variety of pills each day – several times a day – and they ranged from tiny, fairly innocuous pills to massive ones. One pill I had to take each day looked like one of those liquorice torpedoes that you don’t see any more. Except it made me vomit, and made my hair fall out, which I don’t recall liquorice torpedoes doing. I was on a course of steroids which made my face go all chubby and round (it’ll wear off one day) and endless tablets to try and cure the nausea. I’d have a day or two of that – and then a day of two of feeling ok. On those days I went to the pub.
Contrary to what the consultant had told me – my hair did fall out. Great tufts of it. I’d wake up in the morning and my pillow would be covered in hair. I used to gather it up and make fake moustaches to amuse my girlfriend. Or rather – I’d make false moustaches to amuse myself, and then make my girlfriend watch me tit around with a Fu-Man-Chu style ‘tache on. It was hilarious. One thing to note is that I didn’t consider shaving my head until way waaaay after I should have done. You done see many people that previously had floppy hair that are now balding. There’s a good reason for that.
You’re allowed to laugh…
The chemo therapy routine rumbled on for a few weeks and I kinda got used to it.
You get some funny reactions when you look like a dying man – all pasty and scarred with no hair – I remember on one occasion, I was in the toilet at the pub. The guy a few urinals along did something which men never do. NEVER. He looked over at me (whilst pissing) and said – “Are you alright mate?”. After I got over the shock of a man striking up a conversation at the urinal, I told him I was fine. “Listen, mate – if you’re in trouble and you need us to sort someone out for you, just let us know, alright?”. How sweet – he thought I’d been knifed or something and was offering to have someone ‘sorted out’ for me. Bless ‘im. The kindness of strangers, eh?
I used to enjoy making up stories about my scar, when people asked me what had happened.
“I was attacked my a man wielding a hamster attached to a stick”
“I got stabbed… by HIM! *points to the person stood a few feet away*”
And the radiotherapy started. The first thing they did was to tattoo me. Yeah. Pretty cool, huh? I’ve got tattoos. Six of ‘em. They’re used to line up the lasers accurately each time. Yeah. Getting zapped by LASERS. Jealous, much? They’d do that every day for several weeks and then eventually I’d get what is effectively serious sunburn under my armpit. That’s what happened. There aren’t a lot of stories around my radiotherapy. I didn’t accidentally get zapped by the wrong thing and given super-powers. They didn’t do the wrong armpit then have to do it all again. I just turned up – chatted to the lovely nurses working there, listened to whatever rubbish they were playing on their CD player to put me at ease (I remember asking them to switch off a Celine Dion CD because it was making me feel ill), and got radiotherapied. Easy as that. To be fair, the ‘serious sunburn’ was pretty grim. My t-shirts used to get stuck to it and… ugh… it wasn’t pleasant. On the plus side, I now don’t sweat out of that armpit, thus giving me a 50% saving in deodorant bills. Every cloud…
I finished my chemotherapy tablets a week early.
Not because I was supposed to. Because I wasn’t paying enough attention and had accidentally decreased the dosage too quickly, leaving me with a handful of spare tablets. Whoops.
Nevertheless the news was eventually good. Everything was working as they’d hoped and I was ‘in remission’. Go me! After that, my hair started growing back – thick and tufty, not silky and fluffy like before. I went back to work, finished my degree through distance learning (i.e. Open University, not getting a train for an hour each day) and eventually – after five years of regular check-ups, I got the all clear.
It’s a funny thing. I only remember the experience as I have relayed it to you above. It was relatively stress-free for me. Perhaps because I was ignorant of the implications – perhaps because I could only trust what the doctors had told me – that’d I’d be ok – or perhaps because I have an immensely strong character. Ha! I’m just kidding. It’s clearly a combination of the first two. It’s only in retrospect that I think of what my poor girlfriend (now wife) and family (still family) were going through. Jesus. They were amazing, and went along with my ‘it’ll be fiiiiiiine’ attitude. At least to my face. I don’t think I want to ask my Mum what she really felt. I’d imagine it was pretty terrifying. I guess I was in the eye of the storm. I was hoping to sum up this blog with some words of wisdom – something to consider – but… I don’t know what to say. This blog is more an exercise in catharsis than anything else. I’ve never written about my hilarious japes and scrapes with cancer before (and I doubt I will again). Perhaps the one thing to take away from this is that life isn’t always bleak for people who you might assume it to be bleak for. I genuinely had a good laugh. I was off work for six months, I spent half my time down the pub with my mates and my missus, and life was generally alright. That’s not a message you hear very often, is it?
Footnote: I’m not sure what prompted me to write this. I’ve been toying with the idea for many years. Maybe it’s just to ‘get it off my chest’. I’m not sure there’s anything TO ‘get off my chest’. Maybe it’s just that I think it’s too good a story not to share. If ‘good’ is the right word (it’s not). Maybe because I found some before and after photos the other day and thought “Wow. They’re hilarious”. I really don’t know. Since writing this, I have realised that I’ve missed a couple of key stories out, but this blog is already far too long and nobody wants to hear about the time I went to the sperm bank, do they?
*recurring theme – pretty much everyone involved in the process was a lovely person.