My experience of the first three cycles after bowel cancer surgery. Each person responds differently to CAPOX; these are the days and details I recorded, with uncertain timings left broad rather than guessed.
I began CAPOX on Thursday 16 July, nine weeks after surgery for bowel cancer. The plan was four three-week cycles: an oxaliplatin infusion, capecitabine tablets for a fortnight and then a week off. I had been told about nausea, fatigue, cold sensitivity and tingling. I understood the words. My body was about to explain them more thoroughly.
Day 1 Thursday 16 July
I took the early bus from Crieff to Perth, bought a coffee and cinnamon bun, and walked to Perth Royal Infirmary through the cemetery. I found myself wondering how the people buried there had died. Cheerful thoughts for a first infusion, but I kept walking. My appointment was at nine.
Lorraine, my nurse, settled me into a reclining chair. Various bags went up before the oxaliplatin: fluids, anti-sickness medication, glucose. I drank tea, read, listened to music and attempted the hospital cheese sandwich. After a couple of hours my infusion arm grew cold and then developed a deep ache. A warm wrap helped.
When the oxaliplatin finished, I suddenly felt clammy and detached from the room. Swallowing and breathing felt difficult. Four nurses appeared, the chair went back and the emergency trolley arrived. My blood pressure and temperature were normal. Warm water helped almost at once, and the episode settled in about ten minutes. The trolley had made the trip for nothing, which was fine by me. The nurses kept watching me, gave more fluid and let Julie collect me when they were satisfied. We reached home around half past four. I was tired and my throat still felt odd.
The following morning and the first few days
The capecitabine tablets began the next morning. There were five in a dose, twice a day. Tipped into a cup, five tablets looked like an unreasonable breakfast companion. Steroids and anti-sickness medication joined the routine. I learned to arrange food and tablets around each other, and to tell the team what was happening rather than award myself a medal for putting up with it.
Cold became the house rule. I touched something from the freezer and felt a sharp electric shock through my fingers. That was the end of the experiment. Oven gloves took up residence near the fridge. Even rinsing a toothbrush under the cold tap could make my fingers tingle. Cold drinks were out; so were chilled beer and the idea of a drink with Julie outside on a summer evening. Warm diluting juice worked, though Julie called it “piss water”. She was not entirely wrong.
Food became cautious again after the operation: chicken, potatoes, rice and whatever seemed unlikely to start an argument. My mouth and stomach had opinions but refused to provide a written list. I kept walking on the local paths when I could. It was slower than before surgery and the hills cost more effort, but I wanted movement to remain part of my days.
Day 5 Monday 20 July
Then a macaroni cheese that seemed innocent enough led to a dreadful evening. Watching Stargate SG-1, I felt a small rumble in my stomach. Within minutes I was going between the toilet and the bathroom floor with violent abdominal cramps, diarrhoea and vomiting. It lasted perhaps ten minutes, but ten minutes can hold a remarkable amount of pain. Julie could hear everything and could do little except be there. Afterwards I was shaking and exhausted.
I took the medicines supplied for nausea and diarrhoea. The latter worked so well that constipation followed, and eventually Laxido had to negotiate a settlement. I cannot say how much of that evening was the meal and how much was chemotherapy. The macaroni cheese lost its place on the menu either way.
The rest of the tablet days
Most days were quieter, though quiet did not mean normal. I monitored eating, drinking, bowels, temperature, fatigue and the tingling in my fingers and toes. I visited my surgeon for a follow-up during the cycle. The surgical part of the journey was ending while chemotherapy was taking over the calendar.
At home, Bonnie the cat acquired dental problems and an abscess. Giving her antibiotics required negotiations in which Bonnie held most of the cards. After repeated trips to the vet, she recovered. It was strangely reassuring that ordinary domestic chaos had declined to pause for cancer.
The week off
Within a day or two of finishing the tablets, I began to feel better. The cold sensitivity almost vanished. I could hold a cold object and drink fruit juice straight from the fridge again. Energy came back in pieces, as did an interest in food with flavour. Headaches cropped up and generally responded to paracetamol. A rash appeared on my forearms, especially the infusion arm; E45 helped the irritated skin.
I tried a familiar five-kilometre walk with a fair amount of climbing. I could set off near my old pace but tired sooner and sometimes needed a stop on the hills. I had once run a marathon in under three hours. Now a walk around the Knock had to be negotiated, which was irritating but also useful information.
During this break I started writing The Map. I wanted to remember the order of events, but writing also gave me something to do on days when my body would not accept a more ambitious programme. The first cycle had been hard, particularly that evening on the bathroom floor. It had also shown me a pattern: the worst sensations could ease, the week off could bring some life back, and I could get through one cycle. The next one was already approaching.
On Thursday 6 August I returned for Cycle Two. The first had taught me some useful things: bring warm drinks, expect the cold sensitivity and take the medicines I had been given when I needed them. It had also taught me that chemotherapy could introduce a new problem after I thought I knew the rules.
Day 1 Thursday 6 August
I took the early bus again, bought coffee and a cinnamon bun in Perth, and walked through the cemetery to the hospital. Lorraine put up the bags. I opened my laptop and worked on The Map while the oxaliplatin ran. Almost three hours passed before I realised I had barely checked my arm. There was a slight ache, but nothing like the first infusion. At the end there was no cold sweat, throat episode or gathering of nurses. I asked for warm water. Cycle Two was easier going in.
The first week
The trouble came afterwards. Nausea stayed with me for days: rarely dramatic, always present. I ate less, relying on bananas, chicken, rice and potatoes. I had anti-sickness tablets available but did not use them as readily as I could have. Coffee, normally black and dependable, became disappointing. It seemed unnecessarily personal.
The tablets were harder to swallow. They seemed to stick halfway down and made me gag, though food and drinks still went down. I used warm water, slowed down and tried again. Cold sensitivity and tingling returned. The summer warmth was less reliable now; a cool kitchen floor or a trip outside without another layer could set off my feet or fingers. Constipation returned too. On one morning I considered Laxido, but coffee unexpectedly completed the job. It had not entirely lost its uses.
Headaches, particularly in the mornings, usually improved with paracetamol. My lips peeled, food tasted different and I became tired in an awkward way. Sometimes I would fall asleep over a book. At other times I had enough energy to be restless and too little to begin anything. I could call that laziness if I wanted, but the word did not improve matters.
The middle of the cycle
I kept going out with Julie when I could. On a Knock walk I needed two stops before the high point. My breathing was heavier, though my legs did not hurt. We sat on a bench looking towards Ben Vorlich and Ben More while she reminded me to slow my breathing. I wanted to resent needing the bench. The view made a decent case for staying there a little longer.
One night I slept badly and woke around half past three with abdominal discomfort. Another day, roughly an hour of DIY left me with a headache, louder tinnitus and fatigue. I could still do things; the cost afterwards had become harder to predict. On 16 August I moved around the garden but missed the Highland Games. Losing small ordinary outings from the calendar hurt in a way that did not appear on a side-effect leaflet.
During this cycle Julie and I saw the oncologist about the tiny lung nodules shown on earlier scans. He put the images side by side. Some marks had grown, though the original larger nodule had barely changed. The marks were too small to settle what they were. He judged there was perhaps a one-in-four chance they were unrelated to the bowel cancer. I wanted an answer; he could only offer an honest estimate and another scan at the end of August. “Bigger, same or smaller” became the possibilities I carried home.
I continued with the tablets and a rash developed on my forearms. Red itchy patches appeared, and E45 helped the itch. Sunlight might have been contributing. My body did not submit a causal analysis. By the end of the fortnight I was ready for a break from swallowing tablets and thinking about swallowing tablets.
The week off
The rash initially lingered and at times seemed worse, but the cold sensitivity began to retreat. I returned to simple food when my stomach complained and began walking more consistently. On 22 August a lower Knock route with an extension took about sixty-five minutes without stops. Two days later I did the route in about fifty-five minutes. I felt good while walking, then tired afterwards. That was still progress.
Life reopened in modest increments. I could tolerate a cold drink. Food tasted closer to itself. I ate half a pizza one evening and had reflux after a few richer meals, evidence that I was not yet qualified to conduct a triumphant return to normal eating.
Blood tests and signing our wills shared an agenda that week. I also walked through Perth, visited the museum, and went shopping with Julie. We had lunch at Hinterland and looked around St John’s Kirk, where she played “When the Saints Go Marching In” on the bells and earned applause. In the museum I stood for a long time before a three-thousand-year-old oak log boat. All those ordinary lives had carried on around it. My own days had shrunk to tablets, walks and scans; the boat gave me a different scale to look at.
Cycle Two had lasted three weeks, but it did not feel like one continuous stretch of feeling ill. Its beginning had been harder than its finish; its infusion had been easier than the first. I went into the next one knowing both things could be true.
Cycle Three started on Thursday 27 August. By then I knew the drip room at Perth Royal Infirmary, its chairs and beeping pumps, and the rough order in which the bags arrived. Familiarity helped. It did not make the oxaliplatin an attractive way to spend a Thursday.
Day 1 Thursday 27 August
My bloods were acceptable and treatment went ahead at full dose. I worked on The Map as the infusion ran and drank plenty of hot tea. The infusion itself passed without the alarming ending of Cycle One. Julie collected me afterwards.
By evening the tingling had returned, along with dizziness, nausea and a mild headache. The first bite or sip of something could trigger a sudden spasm in my jaw. My throat had also raised its standards: room-temperature water could make it feel tight and bring on gagging, while very warm drinks were comfortable. I could swallow, but the sensation was unpleasant. Chemotherapy was assembling an impressive collection of party tricks.
Days 2 and 3
I slept badly and needed two short daytime naps on the second day. My arm was sore and ordinary objects felt cooler than they had any right to. I had the familiar headache and slight nausea, with anti-sickness medicine helping. The jaw spasm appeared now and then at the first bite.
By the third day I felt surprisingly better than I had at the same point in Cycle Two: no significant headache, nausea or diarrhoea. I distrusted the improvement. The rash on my forearms, which had worsened during the previous break, was fading and no longer itching. Nearly hot tea before the morning tablets and hot chocolate before the evening dose made swallowing them easier. The drinks were no longer a luxury; they were part of the delivery system.
Day 5 Monday 31 August
Four days after the infusion I went back to PRI for a CT scan. I was sent to the mobile scanner unit. In the waiting area a gamekeeper discussed the number of pheasants shot the previous year; I resisted the temptation to launch a land-management debate before a cancer scan.
I knew the contrast injection this time. The warmth spreading through me and the convincing but false sensation that I had wet myself were familiar. Arms up. Breathe in. Hold. Breathe normally. Then it was over. Nobody told me what the images showed. Somewhere, however, the pictures now existed, while I still had ten days until the results appointment. Before the scan I had wondered whether the nodules were bigger, the same or smaller. Afterwards the answer might already have been on a screen. I simply did not know it.
The remaining tablet days
The days continued with capecitabine, warm drinks, food chosen around what my stomach would accept and walks when I had the energy. Some hours I felt nearly normal; at other times I was tired and foggy. My stomach rumbled after meals that seemed unremarkable when I ate them. I kept an eye on my temperature and weight and returned to bland food when cramps appeared.
On Sunday 6 September, swallowing the evening tablets was especially hard. I gagged and felt sick but managed the dose without vomiting. I had cramps without diarrhoea, a mild headache and definite fatigue. Air-fried chips earlier might not have helped. I could not tell. I slept in instalments, a few hours here and another hour there.
I still walked. One day I went up towards Crieff Hydro; another took me around the Knock for about an hour. I reserved a novel at the library and later found that collecting it required a prolonged investigation into several other men with my name. Eventually the book was found on a nearby shelf. I had not yet read it, but felt I had completed the introduction. The comic details mattered. They kept the days from becoming a waiting room with furniture.
Day 15 Thursday 10 September and the week off
I took the final capecitabine tablets of Cycle Three on Thursday 10 September. That same day brought the scan results, with the week off still ahead. Julie and I learned that the lung nodules had grown, though more slowly, while four others were unchanged. There was no sign of spread to other organs. The oncologist now thought it very unlikely that the growing nodules were unrelated to my bowel cancer. He used the word “incurable” and explained that treatment was intended to control it. His estimate for five-year survival was around twenty per cent. Those were estimates and his assessment of my situation, not a personal timetable.
The plan changed. Instead of stopping CAPOX after four cycles, I would continue to eight in total, with bevacizumab added from Cycle Four. We discussed a harsher option if it became necessary, but he did not recommend it then. The scan in roughly two months would help decide what came next. I said there might be a point at which more treatment would take too much from the life it was meant to extend. He understood.
Over the next couple of days I was dazed. I lay in the garden in a down jacket watching clouds, restored an ornament, watched Stargate SG-1 and slept in short stretches. I worried about Julie. We still ate, talked and walked: about an hour on Lady Mary’s Walk felt good despite everything. The immediate side effects of Cycle Three had often been more manageable than Cycle Two, yet its ending was far harder. I had reached the week off, and the road beyond it had grown longer. For the moment I could make tea, go for a walk and take the next day as it came.
