I don’t really know how I’ve ended up in this state.
It’s New Year’s Eve 2015.
I’m with my lovely, teenage daughter in Central London. We just had a bite to eat at Govinda’s in Soho and we’ve meandered down to the Thames to watch the fireworks by the London Eye and the Houses of Parliament with about 1 million other people. It’s been a good night, but she’s oblivious to my plight.
Inside, I feel I should be celebrating. I should be downing a few beers with some good friends, seeing out the old year and partying in the new one…
But I feel terrible. I’ve been keeping a secret from my family; from my kids. And I know I’m going to have to tell them in the next few days and I’m dreading it. Up til now I’ve experienced a whirlwind of emotions. At times, I’ve felt surreal, as if it’s a fantasy, a dream, something happening to someone else. At other times, I feel sheer, blind PANIC – I’m going to die and soon and what the fuck am I going to do!
Living with Sarcoidosis
First, I’ll go back to the beginning. I’ve been living, well struggling, with sarcoidosis. Sarcoy-what? No, I’d never heard of it either until my doctor quietly told me that I had it in June 1999. Apparently, it’s an auto-immune disease. No one knows what causes it. Nice. There’s no cure either. Even better. And it can kill you. Fucking great.
The best to hope for is that it ‘goes into remission’ all by itself and eventually ‘burns out’. If it comes back, it comes back with a vengeance. All you can do in the meantime is to manage it with some heavy drugs with serious side effects and limit what you do day-to-day.
Since then, I’ve been on steroids, immuno-suppressants, anti-osteoporosis drugs and even anti-malarial drugs. I see a consultant at the Royal Brompton Hospital every 6 months or so, undergoing a barrage of lung function tests and have a blood test every month to watch our for liver problems caused by all the drugs I’m on. I get warts and skin tags due to the drugs which I have frozen off with liquid nitrogen. Oh, yeah, I’m on first name terms with my local chemist – not something I really want.
I can’t run or exercise, find dancing difficult – even walking up a hill nearly kills me, I’m so out of breath. I’m like an old man with a 40-a-day smoking habit. As you can imagine, I also suffer from waves of depression – again, typical man, I hide it well and do nothing about it.
But this isn’t the secret. No, that’s far worse.
Last year, I damaged the end of the middle finger on my left hand. No real problem for most people, I know. But not me – it wouldn’t heal. Eventually, I see my doctor who dosed me up on antibiotics and bandaged up my finger with iodine gauzes. But this didn’t work either – I seemed to get a little better and then it’s back to square one. Exasperated, by December 2014, my doctor referred me to my local hand surgeon who performed a minor operation, cutting off a square-shaped piece of skin at the tip of my finger.
And that finally worked. I could see my finger was getting better, looking, well, more like a finger, every day. But there’s a sting in this tail.
Wonder what happened to that piece of skin that the surgeon cut off? Well, he had it biopsied, just to be on the safe side. Turns out that I have skin cancer on my fingertip. Yeah, deadly, terrifying, shit-inducing CANCER. But they’re not sure what kind: either an invasive carcinoma (which is pretty common and treatable) or a very rare form of cancer called eccrine porocarcinoma (which they know so little about they’re not sure how to treat it or how successful that might be).
Super fucking great.
You know, I’m beginning to think I’m CURSED. Now, I’m not of a religious persuasion or superstitious in any way really. But, if you knew my life story, you might just be agreeing with me. In fact, come to think of it, I think my entire family might be cursed.
In a couple of days, I’ve an appointment with a skin cancer specialist. I’m bricking it and no one knows I have cancer as I’ve decided not to tell anyone until I need to, with it being Xmas and all. Why spoil my family, kids and friends fun – after all, they can’t do anything about it? But now I need to tell them all…
New Year’s Eve 2016?
As the London Eye comes alive, radiating bright rainbow colours in all directions, accompanied by a symphony of bangs, cracks, sizzles and cheers, I’m standing watching beside my daughter, my mind in a maelstrom of emotions and doubts.
Will I see my daughter grow up? Will my son with special needs (yeah, forgot to mention that) keep improving if I’m not there? How will my partner cope if I’m 6 feet under?
And will I be here next year, watching the fireworks as the New Year 2016 creeps in…