A Guest at the Feast, page 2
Not being able to taste brings with it dreams of tasting. On days when I was at my worst and could be cheered up by nothing, I imagined a large grilled lobster and then I thought about a boiled lobster. And then I dreamed of a steak cut into strips and marinated and then put into the pan to fry. The strange thing about this is that in the normal course of events, I wouldn’t know marinade from Toilet Duck. But now, in this time of chemo, it was much on my mind. Food had no taste, none at all, but it had texture and it had colour. Sometimes, I was sure I wanted something – a duck breast, for example, or a piece of fruit, or some yoghurt – only to find when it was in front of me that I didn’t want it at all. I liked really thin, cheap, white sliced bread. I found that I had an interest in making a sandwich with plenty of butter and two grilled rashers. I can’t think why I could eat this when I could eat nothing else. I could also eat a sandwich of tinned salmon. A few times I made a big fry-up and added a small tin of baked beans. I ate it all down, even though it could have been sawdust or deadly poison. A few times I gorged on a banana sandwich. I could not drink water. Since I had no taste, my mouth treated it as a foreign object. No other drink was better.
Often, especially early on, I went online to explore my ailment. There are chat rooms where people with cancer share their experiences. For many of them, after a week of chemo, the two weeks afterwards came with much variety. Bad side effects one week; better the next week. But I felt the same way all the time. The internet also mentioned a difficult operation that could take up to eight hours for people like me, whose cancer had spread to a lymph node. When I brought this up with the oncologist, he said he hoped that we wouldn’t have to do it.
In the end, I found nothing on the internet that was of any use to me. Except ginger ale. One patient in a chat room said in passing that when he or she could not drink anything, they found they could drink ginger ale. Ginger ale saved his or her life, or at least his or her kidneys. I tried it and it was better than anything else but still not easy to swallow. Then I asked one of the nurses if she had a solution and she said that I should add elderflower cordial to the ginger ale. That became my drink of choice. Food was much harder. Since I was not hungry and could not taste, I could go a long time without food. I went from 79 kilos down to 66. My waist went from 36 to 30. Since all my trousers started to fall down, I had to buy some new ones.
Because I didn’t have to shave, I didn’t examine myself in the mirror. This was a mistake, since it allowed me to believe that I resembled a normal person. The illusion was broken one day when I was coming out of a pharmacy with a small bag of drugs and needed to get to the hospital for a test. I hailed a taxi and it stopped. As I was about to open the door to sit in the front passenger seat, the driver saw me close up and spotted the pharmacy bag. He quickly drove away. Since there is a methadone clinic for heroin addicts close by, he must have thought that I posed some sort of risk to him or his taxi. In any case, he did me the great favour of making me realize that I looked like a bad Egon Schiele drawing.
After the first five days of chemo, I began to get sores in my mouth. Each day they got worse. When I went for a blood test, it was discovered that some of the cell counts were very low. The hospital phoned and asked if I was all right. When I showed my mouth to a nurse and a doctor I was given some liquid morphine – which I liked – and was told that this problem could be prevented next time by having an injection of some high-tech material that created white cells in some very modern and artificial way.
When my friend Catriona Crowe inspected my house at the beginning of the chemo regime she declared that it would not do. On the floors or on cluttered surfaces there were many items that had lingered there for years. Old keys, old underpants, old Chinese takeaways, old banana skins, half-finished short stories written out in longhand in notebooks, beginnings of novels, books, pamphlets, old mandarin oranges, old apple cores, condoms still living in hope. Catriona made clear that this would all have to go; the house would have to be made hospital-clean. No dishes could be left in the sink. Food would be thrown out when it had reached its sell-by date. The inner reaches of the fridge would be cleared of dried-up food. Smelly socks were not to be left on the floor in the kitchen. Since I did not have a washing machine, bags of stuff had to be sent to the launderette, all of whose machines, it seemed, were now working full-time for me.
Catriona phoned every morning and came most days with news of the wider world and often with food she thought might be palatable. She was judging the Irish Theatre Awards at the same time. As she dropped by on her way back from a performance, I loved asking her if there had been a big crowd at the play. This was what you did in Enniscorthy, where I’m from. If anyone has been out anywhere – at mass, a football match, downtown, in Dublin, to the pub – you asked them: ‘Was there a big crowd?’ When other friends came to visit, they could also be asked if there had been a big crowd at any event they had attended. Once the steroids kicked in, I could talk and pay attention. I don’t know why asking about the ‘big crowd’ gave me such satisfaction. The answers tended to be generally the same.
In that first two-week period after chemo, a pattern established itself. I would wake early to the sound of the seagulls and lie there as the room brightened. I would then call my boyfriend and we would talk on the phone. Then I would take some pills and open the curtains and get back into bed, often half-listening to the radio. Then I would turn off the radio and lie in bed for a few hours without thinking. Then I would decide to get up. The rest of the day would be spent on the sofa. It was not merely that the chemo left me brain-dead so that as time went on I could not even read; the effect of the drug darkened the mind or filled it with something hard and severe and relentless. It was like pain or a sort of anguish, but those words don’t really cover it. Everything that normally kept the day going, and the mind, was reduced to almost zero. I couldn’t think. All I could do sometimes was concentrate on getting through the next five minutes because contemplating any longer stretch of time under the pressure of the chemo and the steroids (and perhaps some other drug) was too hard. At about six o’clock in the evening I would feel OK for a while, but by nine or so a real lassitude had set in again. When I decided to go to bed I would find that the decision made no difference. Two hours later I would still be lying on the sofa. I spent the time staring straight ahead. No watching films; no TV; no radio; no books; no magazines or journals. No memories; no thoughts; no plans for the future. Nothing.
Each day passed like this in pure blankness, punctured by pangs of depression that were close to unbearable and that made going back into hospital for the second five days of chemo easy. I liked packing my case and getting a taxi across town and settling down in the familiar space of the cancer ward. In the hospital, my mouth became an object of some interest, but otherwise it was the same routine: intravenous water overnight, then steroids and anti-nausea drugs and then the juice itself. And then a shower, a walk around the hospital and visitors and then a few hours lying there and then some sleep.
The day after my second week of chemo ended I went back to the hospital and got an injection in my stomach. It felt like nothing. I looked through the list of possible side effects, but without concentration. This treatment was going to be good; it was going to produce or provoke into being essential white cells. That was a Saturday. A week later, at about six in the morning, I was woken by the most excruciating pain in my pelvic area. It felt like something throbbing; with each throb the pain was more intense until it felt that it could not get worse and then it did and did again. And then it died down only to start again. White cells are made in bone marrow: it felt as though the cells were being produced too fast and were getting ready to crack the bone. I called the hospital and spoke to a nurse. Taking note of what I said, she asked me if I could come to the hospital, if someone could drive me over. I reminded her that the pope was in Dublin. He would be appearing the next day in the city, which was now divided in two for security reasons. A car would not get through. The nurse said she would call me back in ten minutes.
In those ten minutes, as the pain became so intense that I actually believed I was going to have a baby, I imagined appealing to the pope to let me through. I would apologize for all the rude things I have said about him. I would take back the assertion that he doesn’t mean a word he says. I would withdraw my view that at least we knew where we were with the previous two. With Bergoglio, no one knows where they are. I would tell him that I was sorry I had said this and would promise to be even more emphatically and eternally sorry if he let me through. This kept me busy as the throbbing pain grew more and more unbearable. Finally, the nurse called back and told me to get the oral morphine I had used before. She told me exactly how much I could take. If the pain was still there in an hour, she said, I was to call back.
I drank the morphine and lay back. Then I called my boyfriend. I took him through the pain as it rose and fell. Soon, we got talking about other things, our conversation peppered with high screams from me. The pain continued for almost an hour. I was ready to phone the hospital again. Eventually, however, it began to die down until, without my noticing exactly when, it disappeared. What it left in its wake was one stoned man. I spent the weekend looking at the pope on my laptop. I was both high and low and sorry I had not had that encounter with him in the middle of Dublin. I had, in fact, got tickets for his event in Phoenix Park, thinking that I might be well enough to trudge across the city and stand in the park while he preached to us all.
Slowly, as the chemo went on, things got worse. There were a few hours, especially in the early evening, that were almost OK, but the rest of the time was grim. There was no pain again, just increasing weakness, continued lack of appetite and growing depression. Nonetheless, the hospital was still, filled with distractions and things that amused me. I liked everybody there and that helped. It was the time at home that was hard. One morning, a few days after I had finished the third week of chemo, I knew that I couldn’t go on. It was difficult to stand and I could no longer leave the house. I hadn’t eaten anything for three days. I was determined, however, to follow the agreed schedule, which included a blood test the next day. If there were any real problem the blood test would show what it was. But I found myself sitting in the middle of a room in real distress. It wasn’t just the lack of energy, or the inability to think, or the sense of some vast shadow wandering in my head: it was much more active and present than that. I tried my five-minute trick. I imagined that this would last only for five minutes. All I had to do was concentrate on the next five minutes, keeping at bay the certain knowledge that there would be many such five minutes and that would include today, all day.
In the end I phoned the hospital. The nurse could not have been kinder, but since there was no pain, no precise problem, she did not seem to know what to say. Feeling bad was part of chemo, so the fact that I felt bad was not news. Eventually, it was clear that I really couldn’t explain what I felt and we ended the conversation. A few minutes later, she called back and said I should come over to the hospital and pack some things with a view to staying for a few days. Up to now, admission to the hospital had been quick and simple. This time it was slow and cumbersome. Waiting there in the middle of all the bustle and busyness was difficult. I tried to get someone’s attention so that I could let them know that I really needed a bed now. My problem remained that I had no pain, no obvious dire predicament. When they finally told me I could go to the ward, I found that I couldn’t walk and needed my wheelie suitcase to lean on as I made my way along. When I was spotted doing this, they told me to wait for a wheelchair, but I was too cranky, too desperate to find a bed. I remember a nurse whom I didn’t know coming with a list of questions. They included a query about my bowels. Had they moved that day? In hindsight, this seems like a perfectly normal question. At the time, I thought it was funny and I told the poor bewildered nurse that I believed the question to be rather too personal. In fact, I said, I could not think of anything more personal. Then I gave in and told her that, as far as I was aware, my bowels had not moved that day.
I’d got it into my head that the last five-day session of chemo was going to be easier to tolerate. My body was getting used to this poison, I thought, though I had no evidence at all for this conclusion. One day I tried it out on one of the most senior nurses. She looked at me sceptically. Once more, the chemo as it went into the veins could easily have been a relaxant. It was all peaceful. On that last Friday, as the last bag of juice emptied out and the cannula was removed from my arm, I felt like a free man. All we would have to do now was wait a few weeks for another scan to see how much of the cancer was still there and how much had gone.
One night the following week as I tried to go to bed, I knew that I was worse than I had ever been. It was like mixing a major hangover with a major flu. I had not been able to sleep for a few nights in a row and I still was not eating. Lying down brought no relief. In the middle of the night I knew that I could not go on like this. At about seven in the morning, I phoned the hospital. The same problem arose: I was not in pain. I had no complaint that had a name. It took a while before the nurse said that I should come to the hospital. They would find a bed for me at some point.
It was clear to me and to everyone at the hospital that I looked awful, but I began to think that maybe this was standard, something all the medical people had seen before. The next day, however, a doctor and nurse came to see me and assured me that lots of blood tests were going to be done. One of these tests showed that my neutrophil count was very low. When I asked the doctor if it could be lower he shook his head. When I asked how it might go up, he said blood transfusions might help and then it might rise of its own accord, now that there was no more chemo. I would have to have my temperature taken every half-hour, he said, including through the night. If it went over a certain point, a big dose of antibiotics was waiting for me. My platelets were also down, he said, and would have to be watched too.
It was in the middle of the night two days later that the nurse, having taken my temperature, whispered: ‘It has spiked.’ Quickly, quietly, she left the room and returned with liquid antibiotics that I was to take intravenously. That meant that I was grounded in the hospital for about a week. I could look at the newspapers in the morning and see visitors, but I still had no desire to read or listen to music. One day a friend came in with a bottle of apple juice from his orchard. I was still living on ginger ale mixed with concentrate of elderflower and whatever scraps of food I could manage to eat. When he had left, I was about to put the apple juice aside when it struck me that I should try some. I found that I could taste it. Not fully, but enough. Over the next few days I found that I could taste blueberries and lemon juice, but not orange juice, not strawberries, not raspberries.
Slowly, very slowly, the blood counts started to go up. Once the antibiotics were over, I thought I would be able to go home, but I was told I would have to wait until there was a real upward trend. One Sunday at about four in the afternoon I was feeling especially unhappy. Catriona was in the US; Hedi was in LA. It occurred to me out of the blue that I should tell the nurses I wanted to go home. When I tried this, I was told that going home on a Sunday was unusual but not unheard of and that my request would be put to the oncologist. After a while, the nurse returned to say that I could go home if I wanted. I could leave this very second, if I wanted to, as long as I knew to call if I had the slightest problem.
My problem, not so slight, was that I couldn’t really walk. I had been disguising this in the hospital, going to the bathroom only when there was no one around, leaning against walls, moving cautiously, sitting on a plastic chair to have a shower. Now, I sat down on the floor of the room and tried to pack a suitcase. Then I sat on a chair and attempted to dress myself. I found that since the suitcase had four wheels, I could lean on it and, bent almost double, move along. I knew, however, that if I passed the nurses’ station using this method someone would notice and wonder if I was really fit to go home. I remembered that there was another corridor that led to a smaller lift. I made my way furtively down that corridor and then, via the lift, to a corridor below, where I met a nurse from my ward returning from her break. Having taken one look at me, she stood back. ‘Are you all right?’ she asked. When I told her that I was perfect, I watched as she assessed the moment and concluded that she should wish me well and walk on.
I finally arrived at the lobby, where I got to sit down, feeling that I would never have the strength to get up again. I looked around in the vain hope that I would see someone I knew. After a long wait, I edged towards the door, keeping close to the wall. Once out on the street, I nodded to the taxi driver who was first in the queue. He came and helped me into the car. When I told him where my suitcase was, he went into the lobby and fetched it. Then he drove me home and helped me into the house.
There were many people I could have phoned, but most of them, I felt, would take the view that I should be in the hospital. Also I didn’t want to disturb people on a Sunday evening. I lay on the sofa, where I battled against cancer once more by lying there staring straight ahead. I had such great resistance to thought that I didn’t even worry. Past midnight, I went to bed. In the morning, I saw that I had no food and no fluids in the house. I got up and took my steroids and dressed. I found walking to the supermarket at the bottom of the street quite easy. I put what I needed in my basket. When the basket was almost full, as I stood in one of the aisles, I realized that again I could not walk. If I tried to move, my knees would buckle. I supported myself against the shelves until a man, I supposed a manager, approached. I asked him for a chair and a glass of water. I didn’t actually want a glass of water but I thought the request would make me sound more plausible. When I was sitting comfortably, I asked him if he could get someone to take my basket to the checkout and then bring my purchases back to me so I could pay. I tried to look like someone who would not spend the day annoying him.
