Non Hodgkin’s Lymphoma stories: snapshot of a diagnosis

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.


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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?”

“No”

“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!

“Congratulations!”

“For what?”

“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.

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Article by
Joe Carley

Joe Carley is a self-described liver, dreamer, grafter, and truth sayer.

Caption:

"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."

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