An Imperfect Storm by Kevin Haugh
An Imperfect Storm: You only realise what it is like when you have been there, (Kevin Haugh 2015)
2004 was a momentous year in my life. On 20th January, I had the privilege of welcoming the then President, Mary McAleese, to the school. It was a great honour for me to meet and greet her on behalf of the school community, and her visit was a most memorable occasion.
Ronan celebrated his 16th birthday on 30th January, I reached a half century a few days later on 1st February, Mary and I celebrated our 25th wedding anniversary was on 30th June, and Brian’s 21st birthday on 22nd September. Life seemed to be good to us and so it was: we were living A Perfect Storm
I registered for the West Clare Mini-Marathon in November. This event is organised in support of cancer patients in my native West Clare and I felt I wanted to participate. I had been consumed by the “running boom” of the eighties, during which time I ran thirteen marathons. I finished six of these in less than three hours, with a personal best of two hours, forty-nine minutes and thirty-seven seconds in the Cork City Marathon in 1983. It was my first time breaking three hours for the marathon, which until then had been a major ambition of mine
While I was taking a shower after a training run on 4th December 2004, I noticed a slight swelling of the glands on the left side of my neck. Initially, I told myself that it was nothing to worry about. However, I decided as a precaution to show it to our family GP, Dr. Shinkwin, when I had a routine check-up with him on Wednesday, 8th December. He made an appointment for me to be seen by a surgeon the following day.
I was admitted to hospital four days later on Sunday evening and a biopsy was taken the following morning. On the morning after surgery, a doctor came to my bedside and said, “I see you have a tumour and there is a problem with your liver”, and then he left. Blindsided by his remarks, I was in absolute shock. I had a tumour in my liver. Oh, my God. I was going to die and very soon too. Thoughts of what would become of my wife Mary, our sons Brian and Ronan, and my mother raced through my head. I was terrified. I was not ready to die. This was not in the script. My mind felt as if it would explode. My whole world was caving in. This could not be for real.
When the surgeon came along some time later, I asked him what the outcome was. He told me that he wouldn’t have any results from the laboratory for a week. Shortly afterwards, I was discharged. I also pondered what the future had in store for me. Somehow, I would have to keep up appearances for everybody’s sake, although my mind was as ragged as a scarecrow in a storm.
I told Mary what the doctor had said about a tumour and a problem with my liver. We were blank on the outside, turbulent on the inside. We were hoping for the best and trying to brace ourselves for the worst. Finally, on mid-winter’s day, Tuesday, 21st December, as the long shadows of evening stretched in the fading light we were informed that I had non-Hodgkin’s lymphoma.
We were devastated. This was our greatest nightmare. My whole world imploded. There was no future. I was overwhelmed with despair, helplessness, anger and hopelessness. The end seemed near and the past seemed irrelevant. It was impossible to come to grips with the fact that I had a malignant tumour removed from my neck and my chances of survival would depend on the findings of further medical tests. The waiting would be painful and the future looked bleak.
I was terrified. The fear was tempered with anger. My prospects did not enthuse me. My lifeline seemed to snap suddenly and contract. I felt I was living my worst nightmare.
A black sea of pain engulfed us. Mary phoned Dr. Shinkwin and he met us immediately. Words fall short in describing the professional and compassionate manner in which he took care of us in our distressed condition.
The next day we Mary and I went to the Mid-Western Cancer Centre. Life was now peppered with uncertainty and both of us were intensely frightened by the prospect of what lay in store for us. I was angry that I had cancer. I wasn’t ready to die and I desperately wanted to live. I bargained with whatever gods might be prepared to listen to my pleas. But the lights were off and there was nobody home. I shrank in fear.
We cried until we could cry no more. The fear of dying was beyond description. The prospect of crossing my last horizon had both of us in shatters. There were times when I felt as if the fear alone would choke us before the cancer had an opportunity to destroy me.
There was no masking the terror that raced through my veins as we made our way owards the entrance of the Cancer Centre. The automatic doors opened in front of us and it felt like we were walking into the waiting room for eventual death. Although the centre was decorated for Christmas, the festive baubles did nothing to blunt the intolerable truths that are told to cancer patients in those consultation rooms. The short wait in the reception area was nerve-wracking.
Right on time, we were taken to a private consultation room for our meeting with Professor Gupta and his medical team. We were treated in a most compassionate and professional manner. Prof. Gupta gave us all the information they had on my condition. I was told my cancer could kill me. That was my new reality. I could ignore neither the facts nor the professional opinion. I had cancer and it could kill me.
“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” Nelson Mandela
We got through Christmas in a haze and tried to keep up appearances for everybody’s sake. It was tough going. Fear and uncertainty had gripped us. It was like looking in on our lives from the outside. I was angry and devastated that I might not grow old with Mary. I might not see Brian and Ronan grow into adult life. I was concerned for how this would impact on my ageing mother also. My emotions were not borne out of a sense of entitlement, rather a relationship with expectation that comes with what might be intuitive progression into my twilight years. My relationship with expectation was severely dented.
There would be no sunset years for me. Instead, I would come to an abrupt end, execution by cancer. Chemotherapy would at best commute my sentence. The horror stories I had heard of its side effects were daunting
The time from diagnosis to the beginning of chemotherapy felt like an eternity because I wanted to start the treatment as soon as possible. To me, it was like fighting a fire. The sooner we started fighting it with chemotherapy, the better the chance we had of bringing it under control and extinguishing it.
“Faith is taking the first step even when you don’t see the whole staircase.” Dr. Martin Luther King.
I had my first session of chemotherapy on the 13th January. Now, I realised that it was time to take a cue from Arthur Miller’s Death of a Salesman; “Never fight fair with a stranger, boy. You’ll never get out of the jungle that way.” I had to reset my compass from self-pity to survival mode and I went into combat with the emperor of all maladies. I galvanised myself for battle and resolved that there would be only one outcome. I would emerge victorious from this battle!
When it was time to leave home for hospital, I said farewell to Buddy our Golden Retriever and assured him that I would fight the evil cancer that had invaded my body every bit of resolve that was in me. We gave each other a cuddle and I went to off to the war!
Entering the cancer day-ward was an eerie experience, somewhat like entering the waiting room for death! I saw death in the eyes of every patient and I imagined that mine must sooner or later tell the same tale. It felt as if I had walked up a dead-end street where cancer pillaged and destroyed us before it fed us to Death, the ferryman all the while waiting impatiently to take our souls across the River Styx. I was in an unenviable position beginning my term on the yellow road. Cancer had me on death row and placed me on the runway of unscheduled take-off!
A sample of bone marrow was taken before I was prepared for the chemotherapy. There was a series of procedures to be passed in advance of the infusion of the chemotherapy, which began at 11.45 a.m. and was completed at 5.15 p.m.
The first cycle was from January to June 2005. It brought part remission. And we entered what is called the “wait and see” process where we waited to see if the cancer would remain dormant or otherwise.
At the end of August we found out that the cancer had changed to fast growing. At that stage Prof. Gupta put me on another cycle of chemotherapy that would take us to Christmas and he immediately set about getting my stem cells harvested just in case a “rainy day” scenario presented itself.
The harvesting of my own stem cells was not a foregone conclusion as I learned en route, however it was achieved in no small measure to the tenacity of Prof. Gupta.
As Christmas approached the dreaded “rainy day” scenario arrived and I would needed to take time off work and have high-dose chemotherapy, consequently I and underwent the various procedures to ensure that I was in a fit condition to undertake the course of treatment that lay in- store for me early in the New Year.
I began high-dose chemotherapy on the 4th of January as scheduled and had the stem-cell transplant on the 10th & 11th of January. Subsequently, my body continued to get weaker and my energy levels dropped over the next three days and I went into survival mode. I was immersed in the routines of life in hospital. I felt like a “junkie” with all the medication I was taking. It was a fulltime job attending to the various hygiene routines. I had very bad mouth sores and I decided in consultation with the medical team that I would get up regularly during the night and use the prescribed mouthwash in an effort to combat the damage that infections wreaked on me at that stage. While these demands were keeping me going on at a great pace blood tests and platelet counts continued to be monitored because my white blood cells needed to drop to zero before I would go into recovery mode. Prof. Gupta and the medical team assured me that all the indicators were progressing favourably in this regard and also explained that my body was growing so weak because of the dropping of the white cell blood count to zero. I realised that I was approaching a tightrope situation when the white cells hit zero I would have very little resistance if the pendulum of fate swung too far in the wrong direction!
The medical team spared no effort with their care. There was a sign “No Visitors” on my door because my resistance to infections was low and every precaution had to be taken to reduce the risk of infections. I would later refer to this period as the Lock-in.
Once we reached the desired zero count in my white blood cells and life took an upturn thereafter. I was released from hospital ahead of schedule on the 25th January which was a major boost in every quarter. I had to return regularly for tests until I had a PET scan in March that gave the desired outcome. I was in remission. Subsequent to getting remission I was put on a course of Rituximab every twelve weeks over a sixty month period until April 2012. I have been off all cancer medication since April 2012 with six-monthly check-ups until last October when Prof. Gupta told me that they (the check-ups) would be annual until further notice. For now, I will take nothing for granted and will not allow cancer to define me or what I do. No bucket list and no boundaries. Happy Days!