I’ve had cancer longer than I’ve had an email address.
That’s quite a thought, when all’s said and done. This end-of-the-line illness has been lurking in my thoughts and in my lymph nodes for as long as I’ve been a journalist and yet here I still am, splitting infinitives quite happily. It even got me a job, which is unusual for a cancer, but more on that below.
I had bought a new pillow, slept awkwardly and ended up with a stiff neck. A few hours of work, sitting hunched over a keyboard complaining and sighing a lot drove my colleagues nuts, and someone insisted I go and see the company nurse (remember those days? Canteens and company nurses). Off I trotted to Fiona, a fearsome Scot with a no-nonsense approach to staff ailments.
“Get yer shirt off,” she bellowed “And I’ll gi’ ye a wee rub”. She may have been less colloquial – time has coloured the story somewhat.
No sooner had I bared my scrawny neck than she shrieked with what I took to be awe at my manliness.
“What the hell is that?” she cried, pointing to a lump on my left arm.
That was something I’d toted around for about a year without really paying too much thought to it. I’d had a patch of rough skin there for years – it had come and gone, waxing and waning, but eventually coalescing into a lump about the size of a 20 cent piece (an old one, not one of these hopelessly small newbies). I’d seen some doctors in the past about the rash (“Change your soap powder” one had declared. “You’re allergic to something”) but nothing much had come of it. Fiona wouldn’t have a bar of my dismissals though.
“You’ll be here at 10am tomorrow and the doctor will have a look.”
The doctor didn’t know what it was but sent me to a dermatologist. He didn’t know what it was either, but declared himself ready to chop it off, which he duly did with my wife looking on. She likes a good bit of surgery, does my wife.
This was about a month before Christmas in 1996 and the holidays and staff levels and whatnot conspired against me. It was a couple of weeks before he could get me back in for a visit.
“Well, we haven’t got the final results back yet, and I’m sorry about that, but it looks like cancer of the lymphatic system. It’s a bloody good job that you’ve got medical insurance.” And there it was.
In the early days of such a pronouncement, you may find yourself adopting a strange and unexpected role: that of comforter. Flat mates, mothers, neighbours, friends, colleagues – they all need a pat on the back and a “there, there, it’ll be all right. Just you see.” It’s not quite like the movies, although I’m pleased to say the flat did commemorate the occasion by throwing a party at which we all got riotously drunk. I even remember declaring “Why me?” at one point which is just to theatrical for words.
My wife and I went to a bookshop to look up lymphoma (remember, this is pre-widespread adoption of the interwebs so we had no resources). The first dictionary in Whitcoulls said “Lymphoma: an aggressive cancer of the lymph system. Usually fatal”. We looked at each other and went off to find a bigger and better dictionary. Rule number one: never accept the first diagnosis. Always get a second opinion, preferably from a bigger book.
From there it was something of a whirlwind of tests for a couple of weeks to try to get sorted over the Christmas break. Off to see an oncologist (if you need one I can wholeheartedly recommend Dr CS Benjamin, Dr Benji to most of us, who is simply one of the nicest people you’ll ever meet, not to mention one of the most intensely busy) who ordered a raft of tests including bloods; CT scan and, my favourite of favourites, the bone marrow biopsy.
Another thing the movies got wrong – up till now nobody had bothered to tell us what it was that I had. Non-Hodgkin’s Lymphoma, declared Dr Benji. Never heard of it, said I, but I’ll see what I can find out. This was the first major online search I’d ever undertaken but not having an internet connection at home I was somewhat hampered. Fortunately my brother-in-law came to the party and printed off around 300 pages of NHL information from the US National Cancer Institute.
The NCI is a great resource and these days divides its website into three parts: patient information; clinician information and specialist information. Back in the day, however, it was all lumped in to one great file so the information I got was somewhat alarming, to put it mildly. “No cure, palliative care is required,” cried the text and put into something of a tailspin of fear. Palliative care means keeping you comfy till you die – I had visions of morphine drips and Christmas dinner on the ward. Of course, it also means treat the symptoms as they arise rather than trying to stop the beastie itself, but that’s not how it read to me at the time.
But on with the tests. The CT scan came first. In preparation I had to drink two 300ml bottles of something called ReadiCat. This is a contrast agent that looks like milk but is radioactive and shows up on the CT scan giving the radiologist something to look at. It had a faint mandarin smell to it and tasted like radioactive milk that had gone off. Choice.
The scan itself was pretty painless – they inject a dye into you at one point and that made my legs feel like they’d been dipped in warm water but other than that it was painless.
I wish the same could be said for the bone marrow biopsy.
Apparently they used to do these without sedation. I have no idea how, because the procedure involves sticking a rather large bore needle into the bone – these days it’s the iliac crest, the back of the pelvis – and sucking out the bone marrow. Twice.
Fortunately the drugs are rather good. Unfortunately, they’re not perfect.
I recently had a vasectomy and to any guy out there considering it but putting it off, let me tell you – it’s a breeze compared with this. You can chat and tell wanker jokes with the doctor while he spays you. It’s great.
Once the results were back – it’s contained and hadn’t spread to my bones – it was off for a quick round of localised radiation on the scar and a couple of suspect patches of skin and that was that. Over and done with by early New Year.
Since then I’ve been back to see Dr Benji every few months, slowly tailing off till this year it’s an annual thing. He feels me up and we talk about cricket and how our families are going. It takes about ten minutes. My wife can’t see the point to it but I quite like going along. Southern Cross pays so what do I care?
It’s strange what having cancer like this will do to you. It’s a death sentence, but I’ve got news for you: one hundred years from now I guarantee everyone reading this will be pushing up daisies. I learned something that we should all know – we are all going to die – but which most of us try desperately not to think about. I’m glad I know I’m mortal because it means I can relax a bit and just get on. I prioritise things somewhat differently to the way I would have before Fiona screamed at me. I won’t put up with a job that drives me nuts because I simply don’t have the time. I don’t suffer fools gladly because frankly I have better things to be doing.
A few years ago a GP asked me if I had any conditions and I said yes, NHL. I explained it all and she said “that’s no good”. I said I didn’t mind and she said “well, you’d be better off without it” and I had to give that some serious thought. Would I actually be better off without it? It doesn’t get in my way much. It’s taught me a valuable lesson or two. Would I be better off blindly wandering through life thinking I was immortal? It’s a tricky one.
The process for dealing with it long term is quite easy, I’ve discovered. It comes in two parts. The first thing you must do is put it out of your mind entirely. Forget you’ve ever had the diagnosis, forget about the beastie residing in your body. Get on with your life.
The second thing you must do is never forget. Not for a second, because the clock is definitely ticking.
Non-Hodgkin’s got me a job once. I’d written out my job application and it was a bit dull and boring so I added “Health: Excellent, apart from the cancer” to the front page. That got me the interview and I bluffed my way in from there. I became a reporter, something I’d wanted to do all my life but which I’d done nothing about. There’s plenty of time, I’d always thought.
Today is Lymphoma Awareness Day so I told Russell I’d write something for him. So spare a thought for those poor bastards who are stricken and I’ll spare a thought for those of you that aren’t. It seems only fair.