The 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 which has had its batteries confiscated, without notice, without any discussion of any sort, by a godly, bossy 10-year-old. I have been like this for several days, it seems. Last Friday I took the last little heap of my 20 daily steroids, which bolster me, and which for the first five days of each 21-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 which 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 20 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 10, 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', 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 (20 minutes of radiotherapy, preceded by 30 or 40 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.
All of us dress casually.
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 15 years of mostly all work and very little play in my publishing career I had no clothing which 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 which 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 which 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 which 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.
Later, I stood behind the set, waiting to be introduced, waiting with the floor team, having some last-minute make-up administered, feeling like one of the best-dressed cancer patients in Ireland but also underdressed for the country's biggest TV show, thinking, "Look down… look down" when my name is announced and the band starts up and I have to negotiate all of those steps which every guest on The Late Late Show fears and targets with equal measure.
Life, officially, has been no fun since I was diagnosed on 9 September, 2010, which, if you like, has become my own personal 9/11, even though nobody has died. Yet. I'm not planning to die either.
For the first few hours, after diagnosis, I was convinced I was a goner. When I broke the news of my 'big trouble' to my wife and daughter, and my mother and sisters, I was fairly sure that I was marked down, by whomever marks down such things, to be done and dusted. Small things, during those first few days, struck me as forcibly as a medium-sized truck. As my youngest son, Stephen, came through the front door from school that first Friday afternoon, I felt immediately sad for myself, and for myself more than Stephen I have to admit, and firmly believed that such happy occasions as seeing his theatrical arrival home were already counting down.
My wife and daughter, supportively, like two happy tourist guides in the land of 'the ill' ask me, regularly, when am I next going to smile?
That, always, surprises me.
I think I am smiling most of the time. I'm actually quite happy and, definitely, not unhappy. And I'm happiest of all with a long glass filled with iced water. My favourite drink in the whole wide world is no longer the fine Bordeaux wine I had been lashing into, during the months of July and August, with the abandon of a mad, rosy-nosed Frenchman with his own private cellar beneath his kitchen floor.
Iced water, long glass after long glass of it in the eveningtime, is fulfilling and satisfying in a peculiarly nourishing way. And, I can genuinely catch more than a glimpse into the life of some poor wretch stranded on a desert island without any luxuries – and understand perfectly well how good, how breathtakingly cutting, a clean glass of water would be to such a man or woman on a hot, dry, desert island afternoon.
My senses are alive, and residing at a higher storey than I ever imagined existed. And not just my taste. My hearing has become intensely tuned to every slammed door in my home, every shout or scream, every X-Box game playing, every squeak from the television set. I have never lived a noisier life. And then, there are my nostrils. These days, I would fancy my chances in out-sniffing the most celebrated sniffer dog in Dublin airport. I smell everything. And everything smells stronger, and smells mostly repugnant, especially smells which are expensive to buy, like, for instance, big-brand perfume or some of the fancier liquid soaps in bathrooms. Within a few weeks of treatment, liquid soap had become my No 1 enemy. It turns my stomach, doubles my nausea, and lingers on my fingers and the backs of my hands for hours and hours.
The disastrous state of this country's economy mostly uninterests me. I read only a little of the daily announcements telling me that Ireland is finished. I avoid all commentary on television and radio, and have done so since the earliest days of my diagnosis, and I understand fully why my dentist has the radio in his surgery tuned to a German station all through the day. But rather than switching to a foreign language for a reprieve from the life of this nation, I have actually switched the sound down on Ireland 2010 and have chosen to watch our politicians and bankers and businessmen moving around, and coming and going, like characters from a silent movie at the beginning of the last century.
In my old business life, I had bumped into almost all of these characters. I made presentations and discussed my business plans with almost all of them. With Sean FitzPatrick (and also David Drumm, whose Anglo Irish Bank business card I still have somewhere in my mini skyscraper of business cards, and which some day I might auction on eBay) and with Michael Fingleton and with Denis O'Brien. And, with my favourite rich man of them all, Dermot Desmond.
While Michael O'Leary still gets 10 out of 10 for returning my phone call one afternoon, and spending 10 minutes informing me that he was not going to do business with me and was not going to give me any money, and then asking me what I could do for him which would not cost him a penny, Dermot Desmond got higher marks from me for his performance one afternoon when four of us rode the elevator to his boardroom in his offices in the IFSC, which were pristine, luxurious, and which had a library overhead and a telescope on a tripod, aimed at the southside of the city, on the balcony behind us.
When Dermot entered he sat at the top of the table. I don't remember him saying anything, but I do remember us starting to talk and, quickly, with more animation and passion than was probably necessary, racing through our presentation and our wonderful plans to make million and millions of euros… and stopping. Dermot didn't say anything. He sat there looking at us, ever so slightly interested, definitely bemused, but said nothing. And, so, we started again, the four of us, supporting one another, interrupting one another, filling any space which needed to be filled and – almost out of breath – stopping. And Dermot, still, didn't say anything. We needed to stop talking, but we couldn't. We needed to say goodbye to him, we needed to escape, but he was in no hurry to lift himself out of his chair. He eventually did stand, and invited us to leave, without having asked one single question in the 45 minutes which had just passed.
Dermot Desmond, and O'Leary, together, with one or two others, might actually be capable of winning the confidence and the complete attention of a great many people living in this country, and also winning the support of whatever number of people out there are watching this country lose all confidence in itself. With Ireland nearly finished off, there's nothing to be lost from asking them to double-check whether the country really is at death's door or not.
The battle in my body which, previously, I have likened to some battle in Tolkien's Middle Earth, has ceased. That's what I have been told. Last week, I was informed by my oncologist that the result of my latest Pet scan was negative, and that technically there were no more evil creatures hard at work in my neck, or hiding out somewhere else in my lymphatic system for that matter.
It was news I expected. I had always believed that I was doubly lucky – in having my cancer diagnosed early and in having my treatment commenced with such speed and professionalism. Add into that the prayers which people who pray have been offering up for me, and the surprising, humbling supply of good wishes and heartfelt support which has been directed my way by old-fashioned post, and also, hard and fast, by email.
I, purposely, have not replied to these people, or thanked anyone personally, believing that my chemotherapy and radiotherapy should be completed, and finished with, before being energetic with my thank yous.
I celebrated very briefly with a long glass of iced water the evening I was told this news. The celebrations will remain on ice. My daily radiotherapy treatment in St Luke's continues to Christmas Eve, and five days each week I am fitted with a plastic mask which fits over my head and neck, and which reminds me that, literally, helmets and shields should not be lowered just yet. I'm told I'm winning. I'm told there's a 10% chance, only, of the cancer returning – once again, that same, sinister Mr 10%.
There will be more tests in January. There will be three-monthly check-ups all through 2011. For the next five years, I am officially informed, we are not going to turn our backs on our opponent.
I only believed for a short period of time that I was going to die of cancer, and for the last couple of months I have been sure that I will not. I have always believed that, like my father, my heart will get me in the end. I will be better next year, and by the end of 2011 I am informed that, medically speaking, I will be healthy and energetic and no longer good for nothing. And then, potentially, it will be time to start worrying again about getting ill, and dying.
In the early days and weeks, after joining 'the ill', I accepted that this was how it was going to end. That may sound a bit dramatic, but when I sat on the side of the bed in my cubicle in the Hermitage Clinic, naked beneath a blue paper gown, and waited there, alone, for an hour or more, the one thought in my head (which, surprisingly, was not upsetting me as much as it should have been) was: "This is how it is going to end."
For a while, after being diagnosed with non-Hodgkin's lymphoma, I didn't worry any more about getting ill. I stopped thinking about my heart, and my high cholesterol, and what might happen, when and how, without even a word of warning. For a little while, I was free of all my foolish worries.
I am tired and weary. The days are moving slowly. Christmas Eve appears to be many months away still. I am a free man, free of cancer, but I have just popped three more anti-sickness pills, I have a blanket over my shoulders as I write, and the smells coming from downstairs in my home, where my wife has prepared a magnificent evening meal for us all, are intriguing and enticing, and at the same time mildly revolting. I only need to shave every three or fours days, and even then it takes three or four seconds rather than three or four minutes with an electric razor. I am bald. I am wearing my cancer clothes. I'm still, officially, a member of a quietly spoken, hugely dignified, calm and strangely contented tribe called 'the ill'.
I'm in no hurry to leave camp.
In its own good time.
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