The Trib

by David Kenny

  ‘It wasn’t me!’

  ‘I am not sick at all ... actually, I’m as strong as a feckin’ horse. I could go for a two- or three-mile run and come back to you in fifteen or twenty minutes ... believe me!’

  That’s what I feel like saying to those around me, those sitting in the other blue armchairs, and those walking around us, working smartly and brilliantly. My oncologist, I already trust with my life, literally, from my very first meeting. She is calm and certain, and embracing of myself and my wife in her words and her body language. All around her is efficiency and professionalism, and human kindness of an exceptionally high standard, except, of course, I feel unprepared and misplaced as a direct recipient of this attention.

  ‘I’m a journalist.’

  ‘A publisher ... books, newspapers.’

  ‘That’s what I do.’

  ‘I’m a former Gaelic footballer, that too.’

  ‘Yes, used to play with Meath.’

  ‘I’m a husband, a father.’

  ‘I’m not a sick person at all ... never have been!’

  ‘I’m definitely not a patient.’

  My right arm, however, is resting on a pillow, and some time ago my nurse had prepared the way, inserting a tube into a vein in the crook of my arm, from which extends a valve-like piece of plastic, taped firmly down on my skin. I’m all set, and awaiting the drugs which will be entering my body intravenously. In pouches and packets, they have just been prepared in a laboratory specially for me, and now they are on their way to the hospital. My name and date of birth is on each of those plastic packages.

  ‘F**k it ... you know what? Ladies and gentlemen – doctors and nurses – you’ve got the wrong f**king man here!’

  Instead, I sit there, say nothing, and try to smile as often as possible. It’s just before 6.30 p.m. when I finally lift myself out of my seat, and walk slowly into a toilet area, and stand, and pee.

  And my pee is an interesting, alarming reddish colour, but I have been told some hours earlier that it will be so, and told not to be at all alarmed. The battle, like some battle from Tolkien’s Middle Earth, as I like to imagine it, has commenced in my body, comprising evil little bastards of all sorts of shapes and sizes on one side, multiplying all the time most probably. And then there’s my men, the good guys, hobbits and elves and cool, clean, square-jawed types played, of course, by Viggo Mortensen and other sword-wielding buddies of his.

  One of the really important guys on my side of this battle (I think of him as Viggo himself) is a drug called rituximab, an extremely clever fella indeed, I am informed – a monoclonal antibody, who can recognise certain proteins that are found on the surface of some cancer cells, and once he sees them, he locks onto those cells, forever! My body’s immune system then charges over the hill and gives the bad bastards a good kicking. Cancer cells don’t like this. Sometimes, it happens that the cancer cells kill themselves before the rituximab and my immune system even get around to finishing the job.

  The other lads on my side are cyclophosphamide, vincristine, doxorubicin, and a steroid called prednisolone. Quite an army, I feel, and, better still, they sound like they will not be taking any shit from anybody!

  Eighteen days earlier, I was told that I had non-Hodgkin’s lymphoma.

  My wife was in Dublin city centre, doing some shopping. I was working at home. The previous Monday I had a needle biopsy taken from a lump, which had appeared from ‘nowhere’, and which felt as big and as hard as a golf ball, just below my left jaw. Anne was worried all week long and she wanted news of the result, but I wasn’t at all perturbed, and had informed her and my doctors that the lump was the result of dehydration, which in turn was a direct result of my magnificent but failed attempt to beat the world record, during the months of July and August, for the consumption of fine Bordeaux wine.

  For the previous three weeks, I had examined the lump every morning as I shaved, and because I had to look at it up close every morning I was, luckily, and thankfully, unable either to ignore it or presume that it might just piss off back to wherever it came from, voluntarily, and most generously.

  On that Thursday morning, 9 September, I got a call.

  As calls go, it was short, but sufficiently informative. Would I like to hear the results over the phone? Or would I like to come in and receive them face to face?

  No good news was proffered.

  Sitting down in front of my surgeon, who was not smiling, and who was not even thinking of chit-chatting on this occasion, trebly confrmed my certainty that I was indeed in big trouble of some description.

  My surgeon was younger than me, and he didn’t beat around the bush. He was direct, without too much emotion, but appeared genuinely sincere in the care and sympathy he voiced, after telling me I had ‘B-cell, high grade, non-Hodgkin’s lymphoma’. He made it abundantly clear in the information he provided me (‘This will either kill you, or the chemo will kill it ... but this is not something you are going to have to live with.’), and also in the information he sought from me (‘What age is your youngest child?’) that I might be in very big trouble indeed.

  He was excellent, I thought. Tough and excellent, and I felt then, and still feel now, that he was someone who was very good at his job of telling people that they might live or they might die.

  The same man had sliced my neck open twice, under general anaesthetic, to examine my lymph gland, take away a piece of it, and finally extract it all. And, in my last conversation with him – which was about the results of a third biopsy which were better than expected – he did say to me, encouragingly, that my chances must now be as high as ‘85 or 90 per cent’, which in all honesty, was not something I really wanted to hear or discuss for one minute.

  What’s a good percentage?

  In my book, if you are in a life or death fight, as I now am, then even a 99 per cent chance of winning is not enough!

  Driving home from hospital that afternoon, I asked Anne, what exactly did he mean by 85 or 90 per cent?

  ‘85 or 90 per cent what?’ I asked my wife. ‘85 or 90 per cent get better? The 10 or 15 per cent – what happens to them? They need stronger treatment? They what?’

  Anne looked at me, dutifully, and lovingly.

  ‘They die, darling,’ she said, knowing that I was already aware of this, and needed to hear it, in order to be shushed.

  In the last number of weeks, I have heard directly, and second-and third-hand, so many stories of people who have fought and won the same fight I am now commencing. I know of several dozen people who are leading full, healthy lives. However, I also know people who did not win this same fight, though my family and friends never talk about them, it so happens.

  Neither does anybody ever telephone me and tell me, ‘I know a man who had exactly what you have Liam ... and he died ... unfortunately!’

  Ten or fifteen people out of every 100 dying is not a percentage that I like at all, thank you all the same.

  If you put 100 people into a room, and announced that between ten and fifteen of them are going to win the lottery in the next year or two, of course they’d be delighted, thrilled by their chances of winning. But, if you put 100 people into another room, and broke the news that between ten and fifteen of them are going to lose their jobs, and shortly after that lose their homes, they’d absolutely hate it, and they’d all be pretty sure in their heads that they were bound to be the unlucky ones to be rolled over and stood upon.

  Between 10 per cent and 15 per cent can look very good, or it can look very bad indeed.

  I’ve never been in the running for ‘Roman Catholic of the Month’. I could explain why, but I’m not going to do so here and now. My single greatest doubt about the Church into which I was born is this: why, in the whole history of the Church, has a woman never been asked to make a decision on anything, and why are women, still today, never to be seen within 100 yards of the Pope?

  I like women. I love them more than men. I trust them more, and I personally know two women in
particular, who are now in their eighties, and who have given their whole lives to serving God, who would do the job of Pope Benedict in the morning, do so brilliantly, and in doing so make him look an awful, absurdly foolish old man.

  All so quickly, I’ve just got Roman Catholics and people who do not believe in any God at all ‘praying’ for me. Hundreds of the former, and a handful of the latter.

  I know this, because my small, beautiful mother was heading off to Lourdes with her beloved choir on the Meath Diocesan pilgrimage, when news of my big trouble first came through.

  I am not a person who prays, and have not prayed for the last half of my life. But I do believe in good and evil. I also believe in the spirituality of our whole existence. Prayer, especially prayer by good people, I firmly believe has to be a good thing, and I am deeply, incredibly thankful for everyone who has thought of me, or better still fought for me, through prayer.

  I am thankful, and I want it all.

  I also believe, firmly, that prayer can help me. Maybe not save me in some wondrous way, but it can help me. My sister Carmel and my god-daughter Rebecca also prayed in Lourdes with my mother.

  Rebecca is her mother’s daughter. Life is straight lines for Rebecca and her mother, and you journey from A to B, and then from B to C, and you don’t beat around the bush. Rebecca is ten years old.

  As she waited to get into one of the brutally cold public baths, which they have in Lourdes for the pilgrims, and which scared her quite a bit, she very sensibly and earnestly, I’m informed, said to her mother, ‘When I get into the water I’m not going to pray for a miracle for Uncle Liam ... I’m going to pray that he doesn’t have too much pain, and that he then gets better!’

  Sensible girl.

  That sort of prayer might get a result.

  I am not waiting to die, and I’m not even thinking of dying. But, I am waiting for some other things. I’m waiting, for instance, for my taste buds to temporarily retire from active duty. I was waiting, but I’m not waiting any longer, for my hair to fall out. On Tuesday morning last, I found enough evidence in my shower and bathroom sink to decide to spend that afternoon buying some head-wear – two caps that I like to think of as more ‘Guy Ritchie’ than ‘Jack Charlton’. On Thursday morning, I had my head shaved.

  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.

  The weariness which has completely taken a grip on me is bone-deep

  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

  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 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 comp
laints 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’.