Non Hodgkin’s Lymphoma stories: snapshot of a diagnosis
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Non-Hodgkin’s Lymphoma stories: a snapshot of a diagnosis
20 years ago I was diagnosed with Non-Hodgkin’s Lymphoma. Was it serious? I didn’t know, I did not ask, and nobody informed me if it was or was not. This is the first time I have thought about it my lymphoma diagnosis for a long time. And it is the first time I have shared in writing my Non-Hodgkin’s Lymphoma stories. You’ll forgive me if the chronology of what happened seems a bit jumbled.
So many repressed memories of my lymphoma diagnosis are now swirling around my brain; there are darts of anger, exasperation, weariness, and a realization that fall to the pit of my stomach, rising in a phoenix of anger, bitterness, and humor.
I was totally blameless.
Where to begin my Non-Hodgkin’s Lymphoma stories? Where to begin the story of how I watched myself develop lymphoma, how I watched myself nurture it, and how I watched myself play my role as a cancer patient. (Or perhaps more aptly cancer impatient).
A likely start date for my lymphoma diagnosis story is February 2000. For many, that would be a convenient starting point for my Non-Hodgkin’s Lymphoma stories. However, these lymphoma stories, my recollections, have many starting points, each relevant and unique but none more definite than another.
This is a recollection with no real beginning and no real end; call it a snapshot of a period of time in my life.
I was a sick child plagued by asthma and tonsillitis in early childhood and by glandular fever in my teenage years. Perhaps this betrayed a weakened immune system. Maybe I was just unlucky. I do recall more time spent in hospital wards than I ever care to remember.
My first foray into manhood came in July 99. I was done with boyhood by then, thoroughly bored by it and restless for adventure to break the monotony of life back home. I took a job as a laborer on a building site outside of Croydon, far from home, and set my sights on earning money and at last enjoying myself. At last, I was comfortable in my own skin.
I returned 8 weeks later, crossing by boat to Rosslare, weighed down by a pocketful of sterling and a tennis ball growing in my left armpit. I was to learn later that this was a cancerous lymph gland.
Life went on for myself and my new passenger despite a knawing unease at being a mere boy again. I promised myself this would only be temporary. Nine months and I was gone. September, October, and November all passed. Nothing happened—my new friend ever-present and content.
December, however, was different. Nights were long, sleepless, and feverish. I would wake chilled and drenched, 12 o clock, 3 o clock, 5 o’clock. Eventually, I would be fully dressed for school, sitting on my bed, waiting to come down the stairs at a time late enough so as not to arouse suspicion. I had always been an avid sleeper.
I dismissed my malaise as growing pains, despite my screaming intuition. The nights became longer and the fevers more severe. I would shake between drenched sheets for hours, thoroughly miserable and longing for the morning, even a cold December morning. My weight plummeted. People noticed. I brushed it off and began rationing my food intake to rationalize the physical symptoms I was experiencing.
I went back to school in January after the Christmas break with my uniform hanging off me. The tennis ball, my long-neglected old friend, had now turned on me. The pain became excruciating. Dressing, sleeping, sports, even sitting was hindered by a dull throbbing ache not 6 inches from my heart. It persisted day and night. Shit was becoming real, and I knew it.
Over the previous 5 months, my resolve steeled but ultimately built on a foundation of sand finally snapped one morning at the breakfast table. My Father recoiled in fear after a cursory examination. He knew, and I knew. He had seen it before. It would be a secret held between father and son for now.
The following few weeks are a blur in my Non-Hodgkin’s Lymphoma story. A haze of doctor’s surgeries, emergency departments, and examination halls. There was a distance growing between my classmates and me, they witnessed my physical deterioration, and it terrified them. I was a witness for months by then and had long retreated somewhere else mentally. Ever watched the Truman Show?
A preliminary diagnosis Non-Hodgkin’s Lymphoma came following a biopsy under full anesthetic. I was humiliated by the words that came over the desk. Humiliated in front of my parents. Was I afraid? No. I was pissed off! Pissed off at the constant doctor’s surgeries and hospitals, pissed off that I would have to repeat a year in school, and pissed off that I was sitting stoically in a hospital corridor and a good brave boy with cancer. Lost and now totally at the mercy of doctors, surgeons with scalpels, and cancer, I decided to be silently pissed off rather than admit fear.
However, this was a new undertaking for me, and I was soon faced with genuine fear. I sat, alone again, in another waiting area for an MRI scan. I was struck with the realization that they think it could be in my liver; that’s why I am here today sharing my Non-Hodgkin’s Lymphoma stories. If it’s in my liver, I am fucked. I should have said something earlier; then maybe I would not be here now. For a half-hour, I sat with those thoughts as I forced a jug of vile white dye down my neck. I buried this memory, and it is only now 20 years later that it sees the light of day again on the web, transcribed from a page of a battered notebook full of lymphoma stories. Maybe now it’s released, I can move on with the life that I wished the opportunity for in those horrible minutes. Maybe they were the most real 30 minutes of my life, and maybe a part of me never left that kip of a room.
Soon after, I stopped eating properly. It would be 9 months later, my appetite again driven by the exertion of labor that I allowed myself to eat again. Doctors’ advice was to drink water copiously, at least 2 liters a day, so I did. Water was substituted for Carlsberg on the night of my 18th birthday. The next day I was admitted to prep for surgery.
The night before surgery, I was examined by a young doctor. She was hot!! She, of course, examined my testicles. The irony was that, as a lymphoma patient, I was not even remotely aroused at this point. This was not lost on me, zoned out completely in a world of my own. I did not flinch during the examination, but all the while, I was screaming inside, “Give me back my body, enough is enough.” After the previous weeks, I felt a lot older than 18. Try 90.
Of course, I have no memory of surgery save for the drunken fuzziness of the trolley journey towards theatre. I actually resented not being afforded the dignity of walking down to theatre to face my fate, like a man! My mother was by my bedside when I woke. I was groggy and said, get these fucking tubes out of me. My mother giggled. It was the first time I saw her laugh in months. I reckon she must have been there for hours, although it’s quite possible it was only minutes. She had three other children too! I never asked.
Days passed as I recovered in the hospital ward. A lone lymphoma patient in a ward full of older men. Different men came and went in the beds next to me, the question in their eyes always the same, “What the fuck is a young lad doing in here, must be serious.” I wanted out and quickly.
I deduced from the doctor’s notes at the end of my bed that the wounds from my lymphoma surgery were healing very slowly, and that’s why I was so long in hospital. The fluid was constantly draining through a catheter into a sealed beaker. I had swapped a tennis ball for a beaker as a sleeping companion. The wound was six inches long, swinging a jagged arc from the center of my armpit towards my heart.
So I hatched a plan. Simple really. I emptied the contents of the beaker into the toilet twice a day before the nurse’s rounds, so only a small amount of fluid was recorded on my charts. A few days later, I was home. Needless to say, I was back in a doctor’s surgery within days, having more fluid extracted; however, that was a small price to pay to get away from my life as a lymphoma patient in the hospital ward.
There were six weeks of rest and recuperation before radiation therapy was scheduled. Naturally, I listened to and then blatantly disregarded every bit of medical advice I was given on how to prepare myself. “Fuck Ye’s, it’s my body!” I was now eight and half stone down from 11.
Read more: Why depression is like drowning?
I returned to school determined that whatever happened, I would sit my exams in June and not be obliged to sit another year in school. I became a book worm or perhaps a revision worm and somewhat of a recluse, very out of character for me. I was still very detached from the reality of being treated for Non-Hodgkin’s Lymphoma. Impatience was my prevailing mood. I could feel the tension building at home, I would not rest, and I would not eat. I didn’t deserve to eat as I had done fuck all in three months. Easter soon came around, and somehow, my energy levels were returning. However, I dared not admit just how fatigued I had been in the weeks following surgery. On one occasion, completely zonked and panicking, it took me 20 minutes to walk the final 500 yards home. Of course, I told nobody.
Radiation therapy is weird. The days beforehand were filled with advice and warnings of the physical and mental side effects that lay in waiting. I didn’t believe a word of it. I was a veteran of mental hell and physical hell by now and was growing weary and irritated by the ‘lymphoma cancer journey.’ I went day after day for radiation, and day after day, I grew in strength. I started to feel like a ‘cancer fraud’ eventually and admittedly began to revel in it (it was the only form of entertainment I had). Every morning at 11, I was amongst people who were dying and who, deep down, knew it. I wasn’t and knew that too. Did I perceive a latent resentment in that waiting room every morning, or did I imagine it? I was the youngest by far in there. I subconsciously despised the pallor of fear and impending doom that clung to that building. I could smell it. That wasn’t for me; that wasn’t for any person my age, I told myself.
Radiation lasts about 30 minutes (It could be much shorter, it’s so long ago now!). You simply lay on a table and get zapped with radiation by a gun suspended above and guided by two pinprick tattoos in my case on my upper rib cage. This is all the while watched through a glass screen by radiologists. Scary? No. Boring. Yes. Normally followed by the repetitive daily questions answered with decreasing enthusiasm as each day passed;
“Are you tired?”
“Are you nauseous?”
“A bit; I had 3 pints last night, and I’m only 9 stone!”
Unlike my hospital stay for lymphoma surgery, radiation was to end only on its own terms when I had completed my prescribed course of treatment. No Pyrrhic victory on this occasion!
“You are cured, now go and live your life”!!
Not often they get to say that, I thought to myself, I’m happy for him, but spare me!
“Do you not want to do another scan?”
“Do you want another scan?”
“No.” Goodbye and thanks.
I walked out of the hospital dumbstruck, thinking, ‘What the fuck do I do now?’
I went and got a haircut.
Joe Carley is a self-described liver, dreamer, grafter, and truth sayer.