How to live through high-grade non-Hodgkin lymphoma type B and not lose your sense of humour
Roger v Hercule 11—28th July, 2018: Crushed by Fatigue
I was tired this week.
Actually, tired doesn't cover it.
The fatigue lay so heavily on me I couldn't even raise my eyelids at times. It was like a form of paralysis. At the same time, my mind was relatively active. Trapped in a body that simply couldn't function.
For the past week, I have only had a few functional hours a day.
The hospital liaison rang me on Thursday evening. The results from my blood test earlier in the day showed my haemoglobin count was down. For real this time. 7.7 grams per decilitre. Transfusion territory.
Only one thing stopped me from having a transfusion. While the fatigue had been crushing during the week, I hadn't been breathless.
The liaison and I agreed to wait until we saw the results of this coming Monday's blood tests. And that if I got worse over the weekend, I'd ring the ward and admit myself for a transfusion.
Yesterday, I was much better.
Today, I am writing this newsletter.
I'm certain Monday's results will nudge me out of transfusion territory.
Nevertheless, I feel a transfusion is inevitable at some point. Until now, I've breezed through the chemo—relatively speaking. But that's changed. Now the chemo is stopping me in my tracks.
Ward Talk:
(Things I overhear in hospital)
Nurse: "Has the doctor been to see you?"
Patient: "He has."
Nurse: "And what did he say?"
Patient (dryly): "That I'm not very well."
003
Kafka runs the admissions department at the hospital where I am treated.
The waiting area was empty when I arrived to check in for my fourth cycle of chemotherapy. Through the glass door, I could see a solitary admissions officer on duty.
So I wrestled myself and my bags through the door. Literally wrestled. The door hinge is so tight, the door clamps down hard on anything that attempts to get through it. Like a glass Venus flytrap. It is possibly designed to keep frail people out. Like patients.
The admissions officer looked at me with all the joy of mortician. "You need a number," she said.
There was literally nobody waiting outside.
She went back to her computer screen. No number, no admission.
Now, I'm a professional storyteller. I recognise an opportunity when I see one.
So I battled the Venus flydoor again.
The numbering system display was blank. I had half a mind to go straight back in. After all, no number was on display and I had no number, so surely it was my turn? But bureaucrats can't do logic. The absence of a number wouldn't undo the bureaucratic requirement to have one. The bureaucratic requirement to get into hospital is to have a number, not actually need medical attention.
I pressed the button on the number dispenser. A slip of paper came out of the slot. I had a number. Or in bureaucratic speak: I was now a number. 003. Not even the good "00".
I sat down on the benches. This was a hard decision. Like most people, I get overwhelmed when I'm faced with too much choice.
After a couple of minutes, the waiting room display sprang to life. It showed "003" in red numbers. Hotdog! My turn already? Such efficiency!
Despite me having a number, the door was still as obstinate.
I arrived slightly dishevelled at the admission officer's desk.
"Name?" she asked.
What? You don't even want to see my number? I could have jumped the queue!
Instead, I just told her my name.
In reply, she said the one thing you never want to hear from a bureaucrat.
"You're not on the system."
My Old Man's Hands
Someone has amputated my hands and grafted an old man's scaly claws. I admit the work is of a high standard. I can't see the seam at all. But still: what the actual?
The doctor who admitted me for my second round of chemo was surprised to hear I was 50. He thought I was younger.
I doubt he'd think the same after he sees what four rounds of Gilbert cocktails has done to me. My skin is scaly and wrinkled. My fingernails look peculiar. Like someone peeled them off and stuck them back on with a minimal line of glue. You can see the adhesive patch under the nail.
Sometimes there is a white powder in the cracks of my skin—especially when I'm in hospital. I'm guessing it's dead skin cells. Although maybe someone is rubbing caster sugar on my arms while I sleep? I should probably ask the night staff to keep an eye out... Jesus! What if it it's them?
