‘MY WORLD WAS TURNED UPSIDE DOWN’
Cancer survivor reflects
Tomorrow morning ( Wednesday), March 11th will be the first time in just over a year that I will sit at my desk in the newsroom of The Argus. On Thursday, March 7th, 2019, I left the office early not feeling well and went to bed early that evening. After a restless and painful night, during which I considered calling an ambulance, I went to the Emergency Department in Our Lady of Lourdes Hospital in severe pain with, what I suspected was a persistent stomach bug, which had bothered me on and off for a couple of weeks and had hindered my enjoyment of my sister’s wedding only the previous Saturday afternoon.
Thirteen days later I left hospital following emergency surgery and a diagnosis of bowel cancer.
My world had been turned upside down. The world of my family had been turned upside down.
I had hardly been sick a day in my life and only occasionally missed work, more often than not infecting the rest of the office when I came into work with a cold.
A bout of glandular fever in my college days was fortunately as serious a health crisis as I faced in my four plus decades.
Facing my return to work tomorrow morning I know this is a significant milestone upon my recovery and it was during an evening walk with my wife a couple of weeks ago that I silently decided that I needed to write my story, the words, the sentences came flooding into my brain. With every step another memory came flashing before me. Not every memory flash was negative, indeed perversely very many were positive.
The twists and turns of my last year are well known to me, my wife, my sons, my mam, dad, sister and friends, but I needed to put it down on paper. Writing and the written word are an essential part of my working life. It is how I process information, organise my thoughts and gain inspiration.
I’ve never talked as much as I have in the last year, nor had as much time to talk and think, but in putting it all down in black and white, I suspect I will get some new insight into my story. I suspect those closest to me will also learn a thing or two as they read along.
What I didn’t decide on the walk, was whether I wanted to publish the story. Yes, in my soul I always knew I had to write the story, I have written it in my head over and over again in the last number of months, but even now as I sit at my keyboard I don’t know whether I want to reveal it publicly. Writing it down and keeping it private, or at least confined to family, is one thing, but putting it out there is another thing altogether.
However at the end of the day, if just one person reading this takes away something positive from me doing so then absolutely it is worth doing.
Cancer is a scary word, we all know that, but perhaps it is not as scary as it was once upon a time. It is certainly no longer the death sentence it once was, and thanks to the advances in medical science and research, living with cancer has become the new norm.
One in two of us will get cancer. If I do publish this story, it is for the people who will get cancer, who will be scared and need to know that while there are not happy outcomes for everyone, there are positive stories connected and associated with cancer.
Writing my story I don’t wish to sound naive or conceited. I know I am not expert or qualified and that others have had far more difficult and traumatic experiences than me.
I am one of the lucky ones. I know that. I know that is not the case for everyone. I know that not everyone is lucky enough to benefit from the wonderful loving support of a family like my own and brilliant friends who supported me at every step.
During my treatment in the Oncology Centre in Our Lady of Lourdes Hospital I personally knew two fellow patients very well and we would cross paths during our regular visits, having a bit of craic, usually talking football and comparing our experiences of treatment.
Tragically both these wonderful men, passed away in January within days of each other. I could only describe both as life forces in their circles of family, friends and community, Tommy battled cancer for over a decade but never lost his zest for life and was looking forward to a golfing trip to Spain at the end of January with his closest pals.
The second man I knew, told me how he loved to walk along the Navvy Bank on good days between treatment and he is always in my thoughts when I walk that same route.
Just this week I learned a childhood friend who had emigrated to Australia had passed away after a long and difficult battle of her own.
Yes I know that I am one of the lucky ones and I very much hope that luck will continue. Every cancer survivor has a five-year aftercare plan with scans and follow up appointments and I have come through my first year check in good health.
Working in the newspaper industry as a journalist since leaving college I have become accustomed to bad news. Unfortunately it is all too common a part of the working day and I think that helped me deal with my diagnosis in a pragmatic and practical way.
Shock probably carried me through those initial days in hospital. That and the endless round of tests and scans, need for blood samples, bedside medical consultations, prep for surgery, consent forms and the period when I begged the nurses to take me off the morphine which put me potty.
However, once home I think the pragmatic and practical part of me took over and my motto became ‘it is what it is’ to each and every twist, turn, setback and expression of concern.
I latched onto the description of my condition, ‘curative bowel cancer’ explained by Professor Bryan Hennessy in Our Lady of Lourdes Hospital in the appropriately named Dochas Centre who explained that in addition to the surgery I already had, I would need a course of chemotherapy given over twelve cycles, but the statistics of a successful outcome were favorable.
Following my surgery and at home recuperating before the start of chemo, I was lost in limbo, frustrated at not being able to drive for some weeks, missing work, wanting to get back at my desk and impatient with the very well meaning cautionary word of advice to take my time.
If someone told me then that I would be off work for a year I would have torn the walls down and at times I did, bored by the long days, frustrated at my illness. But never angry. Of all the emotions I’ve experienced, anger never crossed my mind. Why me?, sure, but why not? No family history, don’t smoke, rarely drink, but as I said so often, ‘it is what it is’.
Of all the emotions experienced, guilt is the one that comes to mind most readily. Aileen Emery, the excellent manager of the Gary Kelly Cancer Support Centre, prodded and poked until she teased that emotional response from me during an hour long chat.
Guilt at what I put my family through. Guilt at seeing their worry. Guilt at seeing the relief and outpouring of stress from their bodies as I relayed the good news I had received from Professor Hennessy at a meeting in December following my treatment.
Their bodies shook with the release of pent up anxiety and worry and rather than being relieved myself, I had an immense feeling of guilt that my illness had caused them such worry.
During my treatment of course I was worried, but my pragmatic, practical self was focused on my treatment. I had that routine, twelve cycles of chemotherapy, one every two weeks, blood tests, three visits to the oncology unit during chemo weeks as well as other appointments and scans.
Then I had to ride the wave of the bad days from the treatment which came over the weekend following the midweek chemo. I had the focus of the good days, getting out and about, doing ordinary everyday things and building up the strength and appetite before the next cycle of chemo.
Those routines carried me along. We counted the cycles off. I remember one day a friend asking me how many cycles I had done. ‘ Three’, I said. ‘ Not so bad, sure you’re halfway there’, he said. Talk about positive thinking, I wouldn’t mind but he was a maths teacher. I know it’s a long time since I went to school but even then, 3 wasn’t half of 12.
The weeks since the end of chemo and the drying up of the medical appointments have been more challenging if anything. January is always a pretty bleak month and this February wasn’t much better with the endless storms, but with no routine, no focus on medicine, no chats to doctors and nurses, no blood tests, there is huge vac- uum, with the comfort blanket of that medical support network removed. More time, more hours to fill. Time to wor- ry. What if this, what if that. Time for the demons in your head. Face that battle. Time to engage with the Gary Kelly Centre and a wonderful counselling session with Aileen who really helped me get everything into perspective and showing me coping mechanisms for the future and how to watch for signs that you are not coping.
Returning to work is actually one of the biggest challenges, but I know that the door to the Gary Kelly Centre is open if and when I need it.
As a lifelong Liverpool fan, their last year has been a tremendous distraction to me. I have lived for every game. Going toe to toe with Manchester City in the Premier League last season, the Barcelona
game in the Champions League and winning the trophy in Madrid and now this season’s remarkable runaway lead to surely their first league title in 30 years.
I’ve enjoyed every kick and every game. It filled empty hours and lifted my spirits when I was having bad days.
In hospital the night before my surgery I watched the away leg of their Champions League clash with Bayern Munich on my phone as they advanced to the next round and I got a text after the game from Dermot, a life-long friend and fellow Red.
We had been caught up in my shock diagnosis and word hadn’t spread beyond immediate family but I knew I couldn’t text back without telling him where I was and why.
So that night I texted all my friends with the news. No calls please, talk in a few days. Tears rolled that night, the dam burst.
Beyond family, those friends sustained me in the months that have followed, kept my spirits up and allowed me to feel normal in what was the most abnormal time of my life.
Meeting up for a cup of coffee with Dermot, Anita, Gerry, John, Sean or Dad or my Saturday game of golf with Davy, Paul and Ciaran when able were highlights of the week. Other golfing buddies such as Brian, Gerry, Michael, Gavin, Terry, Billy and Dad all kept me in good spirits. I went for a day’s Christmas shopping with my mam and sister. Not since I was a child have I done that and I really enjoyed the day out lads.
Summertime and early autumn evening walks around the block, Blackrock, Carlingford, Ballymascanlon and Oldbridge House with Deirdre kept us both looking ahead even when one of us was having a bad day under the strain of my illness and treatment.
The music app, Spotify, is marvellous. I already used it before the world caved in but over the last year, it has been a great companion on long walks down the Navvy Bank, around Blackrock or around the fields at Oldbridge House.
I relived my youth and 1980s and 90s classics from Lloyd Cole, Aslan, The Stunning, Radiohead, Oasis, Red Hot Chilli Peppers and many more besides. Always a fan of U2, recordings of their live performances would always lift my spirits and tempo if I was flagging and strolling along like the old man I sometimes felt like.
Netflix and boxsets filled the sofa days when I didn’t face the world. Just what people did before Spotify, podcasts, Netflix and boxsets I don’t know. Read a book I suppose. Usually a good reader, I hadn’t the interest or concentration to read.
I did throw my hand at some baking, with mixed results and the garden probably was never as colourful with all the potted containers I fed and watered during the summer months. Anything to fill the day and achieve something.
I got back involved coaching with one of my sons football teams having to step out before the summer break and I ticked one off my bucket list with a hole-in-one on the 5th in Dundalk Golf Club and managed to play to and then beat my handicap before the winter closed in.
Taking in a night sailing on the Carlingford Lough Ferry was special at any time but last August as myself and Deirdre watched the sun set over the Lough was a very emotional experience and will live forever in our memory. We had been through a lot and it was a good day to savour.
I don’t know if the good days outweighed the bad, but there were plenty of both. Being admitted back into hospital for a week with sepsis and a serious blood clot was certainly the lowest point. It came after delayed cycles of chemo when obviously my body struggled with all that was being thrown at it.
It was Deirdre’s birthday and at my insistence, determined not to yield to my illness, we went to The Windsor for a meal. After walking from the car and up the stairs to the restaurant I was ready to collapse and we both knew I wasn’t in a good state.
Back home it was straight to bed and the following afternoon, with my temperature soaring we contacted the helpline and were advised to get to hospital straight away.
Fortunately there are protocols in place in such a scenario which helps frightened families and I got a cubicle in the ED pretty quickly and following a battery of tests was admitted to hospital around midnight.
In isolation in a single room, in pain, drugged up on big-hitting antibiotics the tick-tock of the clock on the wall dragged endlessly. I couldn’t sleep, the concerned tones of the doctors describing sepsis as a life threatening condition spinning in my head and one night I even pulled the mattress onto the floor to try and get some comfort and sleep. It didn’t work.
I put my faith in the medical teams in Our Lady of Lourdes
Hospital and my faith was well rewarded.
Throughout, from the time I first rocked up in the Emergency Department they were excellent. Mr Nasr and his surgical team were superb and talked me and Deirdre through every step with patience and empathy, putting us at ease as much as was possible in such circumstances.
Wendy explained what would follow and helped us how best to explain the situation to our two teenage sons. Professor Hennessy was reassuring and confident that everything would work out alright, while Liz who is Clinical Nurse Specialist and as such was the direct liaison between me and the medical team became a very trusted carer.
It wasn’t always like that. I didn’t know what to expect from our meetings, but early on she called me out. ‘You‘ve lost weight’, she said. ‘You look shook’, she said. I thought I was flying, doing great. Quietly I took offence, but she was right.
At another meeting she said, ‘You’ve had it tough. It’s not been straightforward’. ‘I’ve no terms of reference’, I said, ‘ but it’s been grand’. ‘No John, you’ve had it tough’. The two medical case files several inches thick on her desk, suggested she was right.
Liz had my back and I came to learn that, appreciate that and trust her totally.
Going in the doors of the Oncology Unit for the first time was a daunting experience. It was surreal, getting that first infusion of chemo into your body. Seeing the nurses approach in protective plastic gowns didn’t calm the nerves but you got used to it over time. Seeing the drugs flow into your body for the first time is a dramatic moment no one can prepare you for.
Going back after that first time was never as difficult. The nursing team lead by Barry are so professional. They are under a lot of pressure, but they always put the patients first and there is a great camaraderie amongst them and they and the carers make the visits something not to fear. It is personal care, provided by people who really do care.
To them all, Joanne, Leanne, Grainne, Nicola, Stephanie, Jenny, Patricia, Sabrina, Louise and Niamh thanks from the bottom of my heart for your care, empathy and support.
Outsiders sometimes characterise Dundalk as a harsh, stark, dreary border town with the inhabitants equally hard, closed and cold. Living here all my life, I have never agreed with that and now more than ever I can attest to Dundalk folk having an open, generous, golden heart.
Since last March I have received hundreds of house visits, phone calls, texts, slaps on the back, hugs on the streets and words of encouragement from friends, foes and near strangers. Some people avoid you and I understand that, from not knowing what to say to people in a similar boat in the past, but I can tell you that those simple offers of support are priceless.
They really do lift your spirits and those closest to you and make you aware that you are not alone.
Cancer is a shocking and unwelcome arrival in anyone’s life. I don’t think it has made me a different or better person. Hopefully it hasn’t made a worse person. I don’t think I will be a better husband, father, son, brother, friend or colleague as a result.
It does give you a new perspective, the world hasn’t changed but you have and you have to get on with living your life.
I will sit at my desk tomorrow and get back to work, grateful to be doing so and seeing it as another step forward in putting my illness behind me.
My own colleagues past and present in The Argus, Drogheda Independent and Fingal Independent were so supportive, as were the company who gave me their full support in every sense and never pressured me about returning to work.
To Deirdre, Cian, Oran, Mam, Dad, Una and all my family and friends thank you for being there when I needed you most.
As I’ve said all along, ‘it is what it is’.