The Trib (15 page)

I'm not waiting for anything else. The different elements which make up my chemotherapy treatment, as I've happily stated earlier, don't take any shit from anybody or anything, and when I look down through the almost laughably outrageous list of possible side-effects it is clear that anything that moves, or beats, in my body is not entirely out of harm's way.

The strangest thing of all, however, and something I discovered within days of becoming one additional member of that massive tribe of people called ‘the ill', is this: we have absolutely no other worries. Or very few all of a sudden.

Or no real worries at any rate, apart from the fact that we've all got cancer.

But that concern, amazingly, does not consume us or visibly present itself as some form of colossal fear on the faces of those who sit around me, as we wait for our ‘bloods' or our ‘chemo'. We don't complain about taxes or negative equity, or Seanie Fitz in sunny Spain, or Bertie in a dark cupboard. We don't even complain about waiting. I haven't heard one single person, over the last six weeks, not even once – honestly – mutter a single word of complaint. About ANYTHING.

And, believe me, we, ‘the ill', do quite a lot of sitting and waiting!

In the early days, before I became a fully diagnosed member of this amazingly calm, civilised, happy-enough, hugely dignified group of people, I grumbled and put on a few ‘why is it always me who has to wait' faces.

In hospitals in those early days, also, you'd never know who you'd meet or sit down beside, or worst of all, have just a drawn curtain away from you, in the bed next to you. One man my own age who entertained me in conversation in a pre-theatre waiting area in one hospital, each of us buck-naked underneath our hospital gowns, had a problem with the cartilage in his left knee.

One elderly woman, or at least she sounded lots and lots older than me, in another pre-theatre ward in another hospital, was being assured by her doctor that it would only take five or ten minutes to drain the fluid from her left ear, and she'd be hearing fine and tottering out the front door by lunchtime, God bless her. And good luck to her too, I say.

‘The ill', of course, do not wish bad luck or harm to come to anybody else. We just don't need to be with ‘the others' for long spells, or to be there for them if we can help it. That's not because we feel sorry for ourselves, because nobody appears to feel sorry for themselves when the tribe gathers. I certainly don't, which has also massively surprised me.

I feel good.

And, I feel, and this is going to appear completely weird, but it's the case: I feel lucky. The word ‘weird' does not even do justice to that admission. I realise that! Am I slightly bonkers and definitely away with the fairies from time to time, due to the box full of medication I delve into, thanks to my wife's trusty Nurse Ratched-like reminding and disciplining, throughout my day? Perhaps I am, a little, but also I have never felt as clear-headed.

A lady I've met recently, who has survived her cancer, and who was unaware of me feeling ‘lucky', shared with me her experience of feeling ‘euphoric' in the time after her diagnosis. She explained that her life had been brought back to basics, and she could accept that she was now facing something huge, and vaguely unknown, and she felt euphoric about taking on that fight.

For me?

After forty-eight years of wondering, often enough to be honest, what this whole business of living is really about, I've now got some hope, faint though it may be still, that I might actually get to figure it out, or some of it at least.

And, yes, there is the strongest sense of being chosen, hand-picked even, for a right good fight.

Life moves slowly when you're a member of the tribe they call ‘the ill'. Senses are heightened; relief comes from unexpected places; the darkest thoughts jostle with a strange feeling of contentment.

19 December 2010

T
he batteries are gone. It's not that they are low, or that they are temporarily dead. THEY'RE GONE! As though somebody has unscrewed a large panel in my back and prised those two huge AA batteries out of their resting places, and taken them away somewhere. Today, I am as helpful and as mobile as a giant-sized Action Man doll that has had its batteries confiscated, without notice, without any discussion of any sort, by a godly, bossy ten-year-old. I have been like this for several days, it seems. Last Friday I took the last little heap of my twenty daily steroids, which bolster me, and which for the first five days of each twenty-one-day cycle of chemotherapy temporarily mask the fact that I have become something of a weakling, and on Saturday I felt okay. By Sunday afternoon, suddenly, totally unannounced, the batteries were gone. GONE, GONE!!!

This is my third cycle of chemo and the plan is that it will also be my last. I felt equally as low, and almost as entirely worthless as this, midway through my second cycle, but, definitely, when I was laid low and left mostly horizontal that particular week, the batteries in my back were still there. I knew they were still there, I could feel them. This is different. This time I feel vulnerable, completely at the mercy of somebody or something. I feel ... and this phrase is residing stubbornly in my head ... but ... I feel good for nothing. Whoever thought up that phrase? And why such complete dismissiveness?

I move around my home, which I am told I have not left for nine days, slowly and, usually, come eveningtime, with a blanket around my shoulders. I retire to my bed for one longish sleep every single day and also slip in two or three shortish naps on a chair. The tiredness and weariness, which has completely taken a grip on me, is bone-deep. I'm constantly tired and mildly nauseous, but I don't feel a physical sickness. Actually, I have no real physical complaints of any kind. Mentally, I'm alert and functioning alright ... I presume. But, right now, and these last few days, I know I am absolutely, entirely good for nothing. And not to be good for even one single thing is, right now, more alarming than frustrating, and offers me an insight that I would much prefer not to have of what a really serious illness must be like for some of those people I have been sharing large portions of my life with for these last few months. It is Tuesday 16 November, 2010.

I remained light and useless and completely good for nothing for about seven or eight days in total, which seemed an extremely long period of time, but now, on the first day of December, with the fluffiest, softest snow I have ever viewed or rolled in my hands covering everything in sight, my week without batteries seems, almost, incredibly, several months ago.

Life, and days, move slowly when you are a fully diagnosed member of the tribe called ‘the ill', which is very good news indeed, is it not?

Who wants to have cancer, and have both hands on the clock on the wall engaged in some maddening and manic race? Days go slowly, I understand, because everything else has calmed and quietened down in the lives of ‘the ill'. Our bodies move at a cautious pace. Our minds concentrate more, and our thoughts too. To have our daily existence dropping down from fourth gear (with the many ludicrous hours spent revving impatiently), to a comforting second gear, or even a completely self-indulgent and sleepy first gear, is exactly as it should be for every member of the tribe.

But, I need to put down on record something I have learned since first writing about my ‘big trouble' (as I worded it) in this newspaper on 17 October last.

It is important.

It is this.

This tribe I talk about actually has two very different types of people. It has a dividing line down the middle of the camp. And wherever we camp, whether it is in the first of the tiny waiting areas of the oncology department in St James's Hospital (which, for the life of me, has me thinking that I am seated on one of the tiniest seats, in one of the tiniest departure lounges, in an airport hidden away in central Dublin), or in the slightly larger waiting area for chemotherapy treatment twenty yards further down the hallway, or in the treatment room itself (where we go from tight little blue plastic seats to our large, welcoming blue armchairs), there are always two very different types of people – ‘the ill' and ‘the very ill'.

I am in the former group. Fortunately. Thankfully. And those of us on that side of the dividing line in the tribe always need to remember to respect our situation and theirs, and always be aware that our understanding of illness, and of life, and definitely the ending of life, might be far less complete than those who have to count themselves amongst ‘the very ill'.

Therefore, as someone with stage one of B cell, high grade, non-Hodgkin's lymphoma, I have to be careful about what I say and what I write. What do I know? However, I do know that when I spent my week without those two gigantic batteries packed into my back, I got to look down a road I had never even seen before then. I knew such a road existed, of course, but in November I actually got to look and walk down that road a few yards. That's all. Further down that road, closer to death, and touching upon the flick of a switch which comes with extinction, I can't imagine what it's like, and what people think about. I've heard people, who've been well down that road and who've come back up again, say that they have been in places, for periods of time, when they have not cared whether they lived or died. I can only imagine that that must be a place where feeling good for nothing is multiplied by a factor of ten, perhaps, or surely some far greater, even more unforgiving multiple.

Both ‘the ill' and ‘the very ill' wear the same clothes. And, upon first diagnosis, I had to make a quick change.

Turning up at the reception desks in hospitals – and I've been to a great number of desks in a large number of hospitals in the last three months (starting with the Hermitage Clinic where I first was told of the ‘big trouble', and since then taking a long, slow tour of Mount Carmel, St James's, the Dublin Dental Hospital, and St Luke's) – in a sports jacket and shirt, finely creased slacks and business shoes is all fine and dandy for one day.

But day after day after day, two or three days per week?

Or, without fail, every single day of the working week until Christmas Eve, which is now my current treatment schedule (twenty minutes of radiotherapy, preceded by thirty or forty minutes reading Alan Sugar's large, brick-like autobiography
What You See Is What You Get
) in St Luke's?

All of us have to be relaxed, we've got to be in no hurry, and we've got to be seated as comfortably as we can possibly sit. The appropriate clothes are important.

Occasionally, I will still arrive at a reception desk and say ‘My name is Liam Hayes, and I've got a meeting with ...' before correcting myself. There have been no business meetings for many months. There have been, in their place, dozens and dozens of appointments.

‘I'm sorry. I mean I've got an appointment with ... My name is Liam Hayes,' and then I wait for my name to be located somewhere in the middle of a long list of people who have business in that same hospital at that same time.

Within one week of my diagnosis, my wife brought me for a speedy shopping trip. Jeans x 3, casual shirts x 6, pullovers x 3, comfortable shoes x 2. These are my cancer clothes. My wife will, of course, hate that phrase and tell me never to use it again when she reads this (same as, when she hears me tell people I'm thinking of keeping my head shaved when my treatment is over, she announces with sergeant-major like certainty that ‘we will have no associations with cancer when this time passes') but the fact is that after fifteen years of mostly all work and very little play in my publishing career I had no clothing that could be considered suitable for a cancer patient.

A few weeks ago, when I appeared on
The Late Late Show
, having first questioned the show's production team if they honestly thought that talking about suicide and cancer back-to-back in one conversation with Ryan Tubridy would be an excellent recipe for good viewing figures, I made a big effort to get all dressed up – getting out an old business jacket, a good shirt, and finding a pair of slacks that didn't need much work done to them.

In make-up on the first floor, that Friday evening, I found myself in conversation with a fellow Meathman who very efficiently goes by the title of ‘Hector'. We were sitting with our backs to one another, facing into mirrors, and getting along fine, but I definitely did think to myself that he might have bothered to put on a few clothes and not turn up in a pair of jeans and some old, worn tee-shirt.

Minutes later, my wife and I were chatting to Ryan himself, and he looked resplendent, if not absolute perfection, in the sharpest suit I have ever viewed that has not been positioned in a shop window. He's a nice man. And he was the perfect host in the green room – welcoming, and calming, and just exactly right in all the mannerisms that can oftentimes collide and cause disruption on formal occasions. He was actually the best-dressed man in the room, until Hector reappeared and dashed by in the direction of the bar in the newest, creamiest, shiniest three-piece suit I had ever seen.