What's this?

This is part of the full text of the medical memoir "Cancer Patient" written by Hugh Cook. The full text has been published online on a free-to-read-online basis. This autobiographical non-fiction account deals with the author's initial health problems, diagnosis, and treatment with chemotherapy and radiation therapy.

The complete text of "Cancer Patient" is here on this web site but is also available for purchase from amazon.com as a proper printed paperback book. The full text may also be purchased as a download (a PDF file) from lulu.com for US $5. Go to lulu.com/hughcook

For a chapter-by-chapter breakdown of what's in the book (in its online version, in the PDF version and in the paperback version), see:-

Table of Contents

zenvirus.com

diary       site contents       essays       stories       flash fiction       poems       novels

CANCER PATIENT is a medical memoir which deals with the author's autobiographical experiences which involve, amongst other things, chemotherapy, radiation therapy, a brain biopsy, a lumbar puncture (and then some more lumbar punctures), treatment with Ara-C, treatment with vincristine, treatment with methotrexate, treatment with radiation from a linear accelerator, and a vitrectomy (an operation to remove the jelly from an eye). This is a non-fiction account but it does contain a couple of fictional stories, clearly identified as such, and it also includes some poetry.

previous
Table of Contents
next


Chapter Thirty

Summary

The author undergoes the first of six chemotherapy cycles. He is admitted to Auckland Hospital and spends seven days in a hospital bed, during which he loses track of time and misplaces two days. He survives physically, with very little in the way of nausea and vomiting, but collapses psychologically.

        I was disappointed to have been rejected for the clinical trial because I saw conventional treatment, chemotherapy followed by a standard dose of radiation, as having the greater danger of reducing me to the status of a witless vegetable. For me, the key point about the clinical trial was that it would have involved less radiation.
        However.
        Conventional treatment, with chemotherapy as the first step, was better than nothing, and, by the time chemotherapy had finally been organized, I was ready to start.
        I had originally flown to New Zealand with my wife and baby daughter for what was intended to be a short Christmas holiday, with the original plan being to return to Japan on December 28th. However, my health broke down, and my wife elected to stay with me in New Zealand until Monday January 17th, the day of my brain biopsy operation, at which point she returned to Japan with our daughter to see to the vital matter of applying for daycare starting in April 2005.
        Later, my wife returned to New Zealand, arriving on February 9th and returning to Japan on March 11th, meaning she was on hand for the start of my chemotherapy treatment. This was a major plus as she could see that I was being properly looked after. She was very impressed by the care I was receiving at Auckland Hospital, and, in particular, by the seamless team work, the natural and efficient cooperation of the various people involved with the management of my case.
        It was very nice for me to have her on hand during this period, particularly since she was able to bring me Chinese takeaways while I was marooned in my hospital bed. The downside was that my energy levels were pretty low and there were limits to the extent to which I could handle the stress of interacting with my baby daughter.
        The date on which I finally got admitted for the first of my six chemotherapy cycles at Auckland Hospital was Wednesday February 16th. The first cycle ultimately lasted for seven days, so I was not discharged until Tuesday 22nd. Cycles two through six took five days each, and I was also twice admitted on one day only to be discharged prematurely on the next day, no chemo having been administered, because of blood count problems.
        My first chemotherapy cycle ended up taking place in the hematology department rather than the oncology department. To cut oncology waiting lists, some of the resources of the hematology department were used for treating cancer patients, and I ended up receiving all my chemotherapy in the hematology department, where I was well looked after by people who always seemed to know what they were doing.
        During each chemo cycle, I stayed in one of a number of four-bedded wards. These were fairly big with plenty of room round each bed. Each ward had one separate room holding a toilet and wash basin, and a second separate room holding a shower room. The rooms were extremely white, with views out to interior courtyards, the walls of which were also white. There were the usual hospital curtains which could be used to screen off beds, and I found these unobjectionable, though my mother decided she really did not like them.
        My bed was a standard hospital bed, fully adjustable, with a personal light, a nurse call button and, on the wall, just in case, a range of emergency tubes for suctioning and so forth. I had my own locker which contained a brown paper bag where I could dispose of apple cores and other trash, and there was usually at least one chair beside the bed. When visitors came, it was always possible to find enough spare chairs in the ward to seat them all.
        For the first chemo cycle, and for subsequent cycles, I routinely brought two bags to hospital, these containing large print library books (I was having difficulty reading), notebooks, pens, biscuits, fruit, tea bags, thongs, spare underpants, spare T-shirts, toiletries and my own water bottle (safer than a water jug, since I was perfectly capable of accidentally overturning a water jug). Each time, I just parked the bags alongside the wall and put onto or into my hospital locker just the bare minimum of stuff.
        The system could have provided me with hospital pajamas, but I chose to wear underpants, short trousers, a T-shirt and, over the T-shirt, an American-made cotton sweatshirt to give me just that extra bit of warmth that I needed in the air-conditioned hospital. I stayed dressed like that twenty-four hours a day, usually lying on the bed with a sheet over me.
        If I had IV fluids running, and on each admission I ended up having IV fluids running for about five days at a stretch, then if I wanted a shower I could ask for the line to be disconnected from the lure, the lure being the short piece of tubing running into the cannula sitting in the vein.
        I have to confess that I got extremely lazy about having showers, and only had between one and two during each hospital admission.
        The cannulas generally ended up going in the back of my right forearm or the back of my right hand. During the first chemo cycle I had two cannulas implanted, one being used exclusively for a sodium bicarbonate solution, but, on subsequent admissions, I only ever had one cannula in at a time, this cannula being connected to a short piece of tubing which had two ports so two separate IV lines could be hooked up to it.
        I found it perfectly possible to write with my right hand while hooked up to an IV, and the main problem that the IV lines represented to me was that of imprisonment, pure and simple: you're physically tethered to the drip stand, and you're not going anywhere unless the drip stand goes with you.
        My overall impression of the hospital ward, at first glance and subsequently, was one of spaciousness. It was built of a very generous standard. The one thing other patients tended to complain about was the view, and more than one remarked that it was a pity that women who were in to deliver children, and who would typically only be spending a few days in hospital, had the great views from the windows which overlooked the Waitemata Harbor and the Hauraki Gulf.
        Outside the ward, a corridor gave access to the nurses' station, where there was one phone marked "patient's phone", the existence of which I didn't discover until about the third chemo cycle, simply because I never asked "Can I make a phone call?" (Instead, initially I bought a phone card and used a public phone inside the building near the entrance to the hematology department.)
        The corridor also gave access to the "whanau room" (family room), which doubled as a TV room, offering one TV (with no remote) giving access to all the free-to-air channels. And also gave access to the kitchen, used by both staff and patients -- a couple of refrigerators, a microwave oven, an unlimited supply of boiling water available from a special boiling water tap, and a supply of styrofoam cups, paper cups, tea bags, coffee, Milo and plastic sticks of the kind used to stir drinks.
        If you were game enough to go on an expedition, pushing your unwieldy and not entirely stable computerized drip stand with you (the battery keeping the thing running while you were away from the mains power supply) then you could go down an elevator and along to the shopping area, where there were coffee bars, a bookshop, a pharmacy and a couple of other retail outlets, but this was such a hassle that I only did it two or three times in the course of my six chemo cycles.
        Monday to Friday, a Red Cross trolley visited the ward in the morning, selling a whole range of things, everything from chocolate bars to the daily newspaper. There was also a vending machine near the hematology ward, a machine which sold an amusingly unhealthy range of snack foods, things heavy on sugar or salt.
        In the hematology ward, there was no "you must sleep now" curfew and you could sit up reading and writing all night if you wanted to. Sometimes, when a nurse wanted to check something or administer something in the small hours of the morning, she would find me in the TV room, where I would have plugged my computerized drip stand into a wall socket.
        The only two hospital rules of which I was consciously aware were "No smoking" and "No drinking", neither of which applied to me. On arrival at the hospital, I would sometimes see a miserable congregation of smokers, few in number, braving the elements near the sidewalk in a location which was physically off the hospital premises, and so immune to the "no smoking" rule.
        The "no smoking" rule was identical for patients, visitors and staff. Want to smoke? Then leave the hospital grounds.
        The hospital I used to visit in Japan had a rigid "cellphones off" rule, but Auckland Hospital appeared to have no rules on cellphones, and, in practice, patients felt free to use them at any time of day or night, one thing that certainly would have changed if I'd ruled the world.
        So much for the physical conditions of my hospital admissions.


* * *

        Below are some samples of my experience from my first chemotherapy cycle. The journal entry starts at 3:04 a.m. -- I'm having a largely sleepless night in hospital. So there's nothing for it but to write, the books that I've brought with me having temporarily exhausted my interest.
        I was admitted on the 16th and the first entry starts in the small hours of the morning on the following day. At that time I had just one kind of intravenous fluid running into me, this being a mixture containing 0.15% potassium chloride and 0.9% sodium chloride. Later, at 0600, a second IV line was scheduled to go up, this one for sodium bicarbonate, or, in hospital slang, "soda bik".

* * *

        2005 February 17 Thursday. 0304.
        1. Body: rested, bowels okay.
        2. Mind: at ease.
        3. Mood: relaxed.
        4. Eating: normal.
        5. Drinking: normal.
        Catherine and Alan dropped in briefly at about 1900 yesterday together with their son. I think they had just taken him to the Starship, the children's hospital, for some reason.
        I have been spending a quiet night with a drip running intravenous fluids into my body. Methotrexate scheduled for twelve noon today.
        Two other people are in the ward, both on morphine, one with a mouth full of herpes sores and (this data came to me from one of his loud-mouthed cellphone conversations) with painful boils erupting from parts of his body. Both of the other two people are asleep at this hour.
        Got some sleep tonight before I woke up and started writing this. I feel rested and sanguine about what is ahead. Starting from 1200, methotrexate will be used as a destructive drug.
        At some stage, folinic acid will be used as a switch-off drug to stop the destructive process. Malignant cells, it seems, do not have the enzyme required to utilize folinic acid, therefore they die.
        Another drug will be used at some stage. It's Vincristine.
        Also to be used at some stage, by lumbar puncture, but not today, is Ara-C.
        Dr. Porter canceled Tuesday's scheduled lumbar puncture for safety reasons, since pressure in the spine was up, and one thing I have to clarify is how it will be known that pressure levels are safe for me to have a lumbar puncture. I'm not going to submit to one until this is known.
        [Brave words, but thoughts of resistance evidently slipped my mind, because I have no recollection of making any protest when the hour for the lumbar puncture finally arrived. Also, I never did clarify how it was determined that the pressure in the spine was at a safe level. Or perhaps I did get this clarified and have simply done a data dump. Reviewing my journal notes, it's clear that a lot of things that happened failed to result in the formation of memory traces.]
        Overall, my experience here in the hematology ward is similar to my brain biopsy experience. I'm put in a situation where I realize that there are people in hospital who are a whole lot sicker than me, which makes me reevaluate myself as fundamentally healthy and improves my morale.
        A little trouble with the lure (the needle going in) earlier, so it got switched from left wrist to right. The drip unit plugs into mains electricity but can be unplugged and will run happily on batteries, so I am free to go forth adventuring if I so choose.
        I was offered a sleeping pill but declined. They don't seem to have any kind of curfew here: suit yourself when (or if) you sleep.
        Plan to read a little then maybe do some writing. Another IV line goes in at 0600. Maybe I'll sleep a little between breakfast and twelve noon, twelve noon being methotrexate hour.
        Have been given a mouth wash, sodium bicarbonate, and have been advised to use it to help keep my mouth clean. Mouth ulcers are a possible problem.
        In summary, then, with methotrexate hour gradually approaching, I feel calm, relaxed, unworried.
        Yesterday, Wednesday 16th, was hospital admission day. I brought in a 24-hour urine sample, had bloods taken, had a chest X-ray, started drip. Seem to remember having an ECG at some stage, but maybe that was on Monday.
        Anyway, I've made it through to today, Thursday, methotrexate day, my first taste of the poison.

* * *

        2005 February 17 Thursday. 0455.
        Met up with a nurse when I went out prospecting for vending machine junk food, and she had me sit down in the whanau room (where the TV is) and put in a new lure (needle) in the back of my left wrist, ready for a sodium bicarbonate IV scheduled to start at 0600, this being to tilt my pH in an alkaline direction in advance of the twelve noon methotrexate, which apparently is very acidic.
        Seems I will have to provide a urine sample at some stage so the pH can be checked.
        Plan: read, write, breakfast, sleep after breakfast.

* * *

        2005 February 17 Thursday. 0555.
        "This is your soda bik [sodium bicarbonate], all set up and ready to go."

* * *

        2005 February 17 Thursday. 0615.
        Soda bik line starts to sting a bit, feeling hot, so I complain. Nurse puts on a heat pack and arm settles: vein dilated by heat. Guy in bed to the left a bit distressed, and nurse goes off to get pain relief for him.
        A urine bottle is waiting for me in the toilet. I should pee into it so they can get a handle on how my kidneys are doing. The methotrexate can hit the kidneys hard, so kidney function becomes an issue.
        Not really in the mood to write. And drips [illegible squiggle -- chaotic handwriting precipitates a communications failure]. A little more pain now, again, from the soda bik lure in the left arm.
        Maybe get up every hour on the hour to urinate, see how I do with that.

* * *

        2005 February 17 Thursday. 0625.
        And soda bik pain has gone, the infusion now smooth and painless. The IV machine makes a shuffling grumbling sound, smooth, soothing, regular and relaxed.
        A high tech computerized machine with lots of buttons and some LED readouts.

* * *

        2005 February 17 Thursday. 0630.
        Soda bik lure into left arm a little painful, then pain eases off.

* * *

        2005 February 17 Thursday. 0633.
        Pain sharper.
        Pain settles.
        Nurse checks, says okay. I gather that with the soda bik a little bit of discomfort is within acceptable norms.

* * *

        2005 February 17 Thursday. 0700.
        First urine sample in bathroom.

* * *

        2005 February 17 Thursday. 0910.
        Nurse had me sit in a chair which functions as a pair of scales. Weight 69.1 kilograms. Pulse sixty. Blood pressure one hundred and thirty over seventy-five.
        Resolved to have no more snacks. Wait for lunch. My wife will be coming after lunch with food (fruit etc.).
        Left arm a little bit sore. Nurse will get another heat pack. The sodium bicarbonate may cause irritation.

* * *

        2005 February 17 Thursday. 1105.
        Guy on the other side of the room advises me to ask for some petroleum jelly for my lips, because the chemo dries them out. As it happens, petroleum jelly is something I've brought with me to hospital.
        The sodium bicarbonate line is just a little bit painful, a slightly hot nagging.
        Warning: chemo may further change my sense of taste, including the taste of water.
        Weakened on the junk food resolution and went out and got myself a packet of salsa chips (spicy potato chips) and some kind of quasi-healthy food bar with nuts and stuff.

* * *

        2005 February 17 Thursday. 1138.
        Menu for tomorrow's meal choices. I circle what I want and they bring it to me.

* * *

        2005 February 17 Thursday. 1155.
        Plan from now: put up drip, inject vincristine (that will only take a few seconds), put up methotrexate and run methotrexate for four hours, in conjunction with sodium bicarbonate.

* * *

        2005 February 17 Thursday. 1211.
        Methotrexate up and running, a big brown bag of stuff like dirty urine. Four hours. Sodium bicarbonate continues into my left arm. Switch off drug to be injected via the IV line at twelve noon tomorrow. Wash hands carefully for three to four days because methotrexate will be in your system - presumably any urine will contain methotrexate, and this stuff has to be treated as toxic.
        Report any side effects ASAP.
        Lunch has arrived!

* * *

        2005 February 17 Thursday. 1238.
        Lunch eaten, okay.
        So far, with the poison running into my body, everything feels normal.

* * *

        The journal entries above give the flavor of the chemotherapy experience, the most notable aspect of which was the number of interruptions -- meals being delivered, blood pressure taken, temperature checked, and the nurse summoned every now and then to attend to some kind of problem with the computerized drip stand, which would complain from time to time that there was air in the line or that the line was occluded.
        The sodium bicarbonate drip which had been causing some pain to my left arm was eventually removed and relocated because the cannula had managed to rupture its way through the vein with the result that the soda bik was bleeding into the tissues of my left arm, causing puffiness.

* * *

        As the journal entries above indicate, during the first chemotherapy cycle I was not exactly sleeping well. In fact, during that first chemo cycle, I got ground down by sleeplessness, pure and simple. I was being driven by the oral steroid dexamethasone, eight milligrams a day, which reduced my need to sleep and made it difficult for me to sleep, so I was functional (after a fashion) despite an insomnia which cut my hours of sleep to perhaps four, three, maybe on occasion only two hours a night.
        I refused offers of sleeping pills. I had drips pouring fluids into my body and I didn't trust my bladder to look after itself unattended. I wanted to be able to wake up any time I had to.
        In addition to the dexamethasone, my rest was degraded by nurse call bells, by the unrestrained use of cellphones by the other patients in my four-person room, by the beeping protests from my computerized drip stand any time anything went wrong (air in the line, for example) and by the interruptions for taking pulse, blood pressure and respiration, for measuring oxygen saturation, for drawing blood, for doling out medicines and so on.
        Mercifully, my vomiting was limited to a token effort, two or three plastic tubs filled by vomit, and I didn't have much nausea. I got off lightly. And, in the five subsequent chemo cycles, I was to experience no nausea and no vomiting at all.
        The hardest part to take was just being a patient, always the subject of concerned investigation. I realized later that the staff were a bit anxious because I was an unknown: nobody could tell in advance how I might react to chemotherapy. During later chemo cycles, when I had a bit of a track record, everyone was more relaxed, including me.
        Because I was immunologically compromised, anything suggesting fever was taken very seriously, to a point which annoyed me.
        I got a mystery beige rash over quite a bit of my body. At the time, nobody could figure out what the cause was. Herpes? Chicken pox? Tests came back negative. Later, it was decided that perhaps the beige rash was an allergic reaction to a drug called allopurinal, a drug given to help the body cope with the byproducts of the breakdown of tumors. This breakdown is greatest during one's first chemotherapy cycle, and I did not receive allopurinal during subsequent cycles.
        I also spiked a fever for no apparent cause. Blood tests were taken and I was sent for a chest X-ray. My blurred memory fails to tell me how many times I was sent to be X-rayed during that first chemo cycle: once or twice?
        Although I was keeping a diary, I lost track of the date. By the time it was Tuesday, I thought it was still Sunday. My sister, visiting, told me later that I looked like "an alien". I was collapsing intellectually, but had no insight into this collapse. I thought I was functioning just fine and was perhaps being a bit sly by conserving my energies rather than zealously interacting with the world.
        At times I would make a decision to do something -- drink some water, for example -- and would then lie in bed for ten minutes or more before being able to summon up the volitional power to move. I had brought in books to read and notebooks to write in, but didn't get much done.
        Eventually, discharge day came. My projected five-day cycle had stretched out to seven days because I had been kept in because of my fever. I was discharged with antibiotics to take just in case, though nobody knew what infectious agent might possibly be loose in my body.
        My father drove me home. I could not help but notice the variety of the world outside the hospital. Every single vehicle on the roads had a license plate, and every singe license plate was different.

previous
Table of Contents
next

The text on this page is part of the cancer memoir "Cancer Patient" which has been posted online. All the chapters of this book are on this website and can be read for free online. However, the text is copyright - all rights reserved. For permission to use this text or any portion of it contact Hugh Cook.

Disclaimer

        This personal memoir of the writer's encounter with cancer (non-Hodgkin's lymphoma of the large B-cell type) attempts to cleave to the truth. However, the text may contain information that is wrong, outdated, incomplete or otherwise misleading.
        This memoir has been written in a time of illness by a cancer patient who, though he feels sharp enough, must admit to sometimes misinterpreting things, forgetting things, or, on occasion, quite simply not hearing things.
        This memoir is designed to communicate the writer's personal experience and is not intended as a source of medical information. Got a medical question? Ask your doctor.

Cancer Patient Copyright © 2005 Hugh Cook.

Hugh Cook

top