by Rodney Porter
When I laid eyes upon my father lying motionless on his hospital bed, his face covered in red sores, bruised eyes and lips swollen with coldsores, I burst into tears. Sobbing on my mother's shoulder, all she said was: "I guess it's a shock to see your dad like this."
To be honest, it was a bigger shock than when my mother had first telephoned me in London to tell me my father had been admitted to the Ulster Hospital, diagnosed with leukaemia.
Four weeks prior, on a Monday morning my father had gone to see his GP about a red rash on his ankles and lower neck. By the end of the day he was in a hospital bed. He was transferred a couple of days later to the Royal Victoria Hospital and by Friday he started chemotherapy to kill the cancerous cells in his blood. It was on this day that I first visited him.
My father was sitting up and talking quite amiably, although he seemed to still be coming to grips with the news of his leukaemia. Also, the effects of the chemotherapy were starting with the onset of nausea.
When I first heard that my father had leukaemia I was gobsmacked. Here was a man in his early fifties who did not drink alcohol, never smoked, watched his diet and exercised regularly. In fact, when the GP attempted to contact him, it was through my mother who had to call him at the YMCA's gym in Belfast. It certainly did not seem fair.
What I knew about leukaemia then could have been written on the back of a postage stamp. I searched the internet for information and printed off some brochures from the London based organisation, the Leukaemia Research Fund. Nothing seemed to make much sense, except that his condition was serious. But one thing that stood out, was that I could not find the word 'cure' anywhere. It turned out that this is the one word that the doctors are reluctant to use with leukaemia. Only around one in every thousand adults will at some time develop a form of leukaemia and very little is known about it. The Royal Victoria Hospital deals with about 10 cases a year and the City Hospital sees only two or three. Childhood leukaemia has a higher incidence.
Put simply, leukaemia is a malignant disorder of white blood cells, a cancer of the blood which can kill - in my father's case, in a matter of weeks unless treated.
His diagnosis of acute myleoid leukaemia sounded terrible. It is one of the most common types alongside chronic leukaemia. The terms acute and chronic refer not to the severity but to the speed of the onset of the disease. Acute is swift and needs urgent medical attention, whereas chronic is slow and may never be detected.
I got to a point where reading the piles of literature and talking to the doctors and nurses no longer helped. I stopped caring about leukaemia or previous victims of the disease. All I cared about was my dad and whether or not be would live.
It became so frustrating not to know his prognosis. Would he live for the next five years, or would he even see the new millenium? There was no simple answer because no-one honestly knew.
The chemotherapy consisted of drug trials - variations of different drugs to see which worked best. However, it wasn't this treatment that resulted in his poor physical state. Sure, it made him feel sick and knocked him for six but it was an infection after his first 10 day course of treatment that really put his life on the line. With no natural immunity, he was given anti-biotics. So many various liquids - blood, white blood cells, nutrients, chemotherapy and anti-biotics - were being fed into his body that a Hickman Line was surgically inserted into his chest.
As a result of the infection, my father found it a great effort to do anything, never mind talk. What he did manage to say was: "It just takes so much effort to do anything." He lay silently in his hospital bed, his face jaundiced, bruised and battered as tubes pumped fluids into him. It felt so alien to look at this man who was my father.
The infection has left him weak but things are starting to improve slowly. But with the results of a bone marrow biopsy due soon and around four more courses of chemotherapy to come, he is not out of the woods yet.
Like many illnesses, it has affected my whole family with my mother having to bear the brunt of the burden. The first few days were traumatic but now everyone seems to be coping a little bit better with new routines and a constant bedside presence.
I have had to accept that things must be taken on a day to day basis. One haemotologist I spoke to explained it with more clarity: don't blow the family fortune on one big final party, but at the same time don't leave anything unsaid or undone.
My father has a tremendous physical strength and a formidible spirit and is also a devout Christian. I believe he is fighting the disease with all his might. Of course, I want my dad to live and to enjoy a good quality of life. I want him to retire and pester my mother. I also want him to become a grandfather. But most of all I want to see an end to his pain and desperation.
Rodney Porter is an accomplished medical journalist and the new Marketing Editor of Mediconsult.Com
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