4. Radiation

I started radiation therapy on Monday 2 July 2007. It didn’t hurt, but I did feel a bit upset about it. I had to go into the simulator first, so they could re-check the marks on the mask I wore for the treatment, and add some new ones. The mask was a plastic sheet moulded to the shape of my head and shoulders, and very tight – I couldn’t even blink once it was on. The radiation technicians (RT’s) kept adjusting the table, which it was attached to, to make it looser and eventually had to cut out a piece around my nose and mouth, so that I could breathe.

This is a photo taken at my last treatment, when I had a naso-gastric feeding tube.

After the simulator checks I went to wait for the treatment, and sitting in the waiting room started to cry. Andrew had tears in his eyes too. I just couldn’t believe that I was about to have radiation treatment, for cancer. I known this for three months, but sometimes it was a lot more real and frightening than others. The RT’s were sympathetic and gave me time to get myself together.

The treatment itself was just like being in the simulator. I lay on the table, my head on a hard plastic headrest. Once the RT’s lowered the mask onto my head and fastened it to the table, I was sandwiched very firmly between the head rest and the mask. I could hear the RT’s moving about, and feel them occasionally touching my face as they made marks on the mask, putting on pieces of tape and taking measurements.

Each time they finished making marks and getting the equipment in place, they left the room, and after a pause, the machine buzzed as the radiation was delivered. I wasn’t supposed to feel or see anything (and with the mask on that tightly I wouldn’t see a herd of elephants stampeding towards me), but I did get very faint hint of a chlorine like taste in my mouth in the first moment of each dose.

***

I had planned to keep a journal during radiotherapy, and on the first day I wrote a short entry describing what had happened, along with the optimistic comment that there were no side effects from that treatment. I didn’t write another entry for three months. The radiation therapy (RT) experience turned out to be so much worse than I could have imagined.

I felt side effects from the first day, not long after I finished writing the first journal entry. I tried to eat some strawberry yoghurt. As soon as the spoonful hit my tongue, I could feel pain spreading throughout my mouth. I put my hand up to my throat, and could feel huge swelling around my jaw. I felt a sense of dread: the same old story was repeating itself. Every time I took a medicine, I experienced side effects, every time someone in the vicinity got a cold, I caught it too, and now I was going to experience the wost possible side effects of radiotherapy, and as quickly as I feasibly could too. That’s certainly a glass-half-empty approach, but it turned out to be realistic as well.

That afternoon I felt the first waves of nausea that were to be my constant companion for the next few months, and I took the only approach that seemed to make sense: I went to bed. That set the pattern. Every day I would get up, get dressed and have breakfast, and drive to the Wellington Blood and Cancer Centre. I would check in at reception, head around to the waiting area, and wait for my treatment. I stopped dreading it or feeling upset, I just sat in silence and thought of anything else, it didn’t matter what, as long as it wasn’t cancer.

The mask I wore for treatments was stifling and claustrophobic, and the mouth bite I wore to keep my mouth and tongue in precisely the right place became increasingly painful. The RT’s were wonderful and did all they could to make it comfortable, but as the side effects from radiotherapy worsened, it was a losing battle.

Once treatment was over, I drove home, dragged myself up the front steps to our house, and went to bed. I would usually sleep for the rest of the day, only getting up late afternoon to see the girls, then spend a few hours up before retiring for an early night.

It might just be my own jaundiced view, but the winter of 2007 seemed to be the coldest, wettest winter in history. Although free parking was provided at the Cancer Society, I gave this up after only one week and took sanctuary in the much closer parking available inside the hospital grounds. The Cancer Society was an unsheltered five minute walk from the Cancer Centre, across a busy road, skirting the vast building site that was the construction zone of the new Wellington Hospital, which for some reason had resulted in the loss of footpaths and the creation of dozens of massive potholes that filled with water at the beginning of winter and never emptied again. Buses and cars shot past, showering pedestrians with water, and once I turned off the road into the hospital grounds it was an uphill walk into bracing southerlies and driving rain to the Cancer Centre. The few dollars it cost to park in the grounds was a small price to pay.

For the first week of radiotherapy I felt only sick and tired. Each week the nausea and exhaustion worsened, until by the end I was sleeping at least 16 hours a day and vomiting daily. I saw my oncologist every week, or more often if I needed to, but nothing he prescribed seemed to make the nausea to away. I saw a dietician too, and her concern for my wellbeing grew week by week, because far worse than the nausea and exhaustion were the burns to the inside of my mouth. The pain became intense, ulcers coated my tongue and the inside of my cheeks. I moved from solid food to purees, to protein drinks and shakes, and eventually I couldn’t tolerate even such bland food, and my only sustenance was apple juice. The morphine my oncologist prescribed didn’t even seem to touch the sides, every mouthful was agony.

In about the fourth week, my oncologist suggested I might be suffering from depression. I was slightly incredulous. I was vomiting every day, exhausted beyond measure, and in excruciating pain. I had cancer. I was partially deaf – the radiation was burning the insides of my ears as well, and the resulting fluid build-up meant I could hardly hear. And I was starting to lose great big chunks of hair. Of course I was bloody well depressed! But in my opinion that was a totally reasonable response, I was already taking antidepressants anyway, and frankly I had better things to worry about, like finding something to stop me vomiting every day, and something to ease the pain, thank you, while he was at it.

The next day my left ear finally developed a full blown infection, the pain put all the pain I was experiencing in my mouth to shame. I was absolutely blindsided, it literally felt like my eardrum was exploding inside my head. I told Andrew I would rather give birth than experience this pain. Every time I tried to take painkillers I vomited them up again. By now it was after 5pm and Andrew rang the on-call oncologist at the hospital. He suggested I come to A&E, and Andrew drove me there. While Andrew went to park the car I took a seat, listening to the receptionist tell people there was a three-hour wait.

A wave of nausea hit, and I raced to the bathroom, but too late. I vomited all over the waiting room floor. In tears I rushed on to the bathroom, and when Andrew arrived he cleaned it up. I felt such a spectacle, such an idiot, and so ill. Luckily I was ill enough not to have to wait for three hours, and the oncologist decided I should stay in hospital.

I was given a bed in the short stay unit, attached to A&E, which although new was not a very nice place to stay. The nurses seemed to have no patience for me, snapping at me for not drinking enough fluids. I tried to explain how burnt my mouth was, but their attitude seemed to be that I needed fluid, so I had to drink, and that was that. One morning, desperate to please a nurse (which amazes me now, but I was at such a low ebb the basic need to not be a burden was overwhelming), I drank an entire glass of water. When the nurse came back I proudly announced my achievement. “Oh good” she said, “just a pity it wasn’t the whole jug you were supposed to drink”. With that she re-filled my glass, slammed the jug down, and stalked off.

For two days I received IV antibiotics, morphine and anti-nausea drugs, then I went home.

I still couldn’t eat, and the next week I had deteriorated to the apple juice diet. I would wake up in the morning after a night of tossing and turning and waking up constantly, with absolutely no energy. Food was out of the question, so to get some sugar, and hopefully enough energy to make it to the hospital and home again, I took my morning morphine with small sips of apple juice. It was unsustainable, and when I arrived at radiotherapy on the last Tuesday of my six weeks of treatment, finally the dietician had had enough. My oncologist had rather inconveniently just left for Australia, so the dietician summoned a registrar and insisted that I was too unwell to remain at home: I needed IV pain relief, and a feeding tube to bypass my burnt and hopelessly painful mouth.

I sat in a clinic room vomiting intermittently while the registrar, Dr C, assessed whether I needed to be admitted. It wasn’t a difficult decision to make, and once he discovered the oncology ward was overflowing, he left it to the bed manager to find me a bed. In the meantime he attempted to insert a naso-gastric feeding tube. My confidence was not boosted when he inserted a USB stick into the computer in the clinic room and bought up a PDF document with instructions on how to insert the tube. A last minute refresher before trying to get a tube into the stomach rather than my lungs might be a good idea, but I really wanted someone who didn’t need a refresher to do it.

My misgivings were well founded. Dr C might have been dealt a stacked hand of cards, since I had already been vomiting, but as soon as he got the tube through my nose and into my throat, I started vomiting again. Again and again, I retched into the little plastic container that started filling at an alarming rate, but Dr C persisted, pushing the tube further and further down. Finally, feeling that I was about to see my intestines emerging as well, I reeled back, waving my hand frantically in front of my face and begging him to stop, stop, stop. Defeated, he pulled out the tube and withdrew to the desk, while I flopped gratefully onto the bed and inwardly pleaded with the universe to cut me a break, and soon.

While I generally make all efforts to avoid being admitted to hospital, I was at such a low ebb I was desperate for help. After an unsteady start Dr C was outstanding. When I told him I didn’t want to go to the short-stay unit again, he found me a bed in a surgical ward. He charted a cacophony of drugs, more morphine than I had ever had before, powerful anti-nausea drugs, steroids, antibiotics. When, after a couple of days the pain had subsided from 10/10 to 6/10, he merrily announced that he could do better than that, and charted more morphine. I could have kissed him.

The first night, I slept 11 hours, the best sleep I had had since radiotherapy started. I felt better instantly, and more equipped to deal with the collection of room-mates I found myself with. One old lady, clearly in the grips of advanced dementia, called out to the nurses incessantly. For some reason she had abandoned the call button after her first night in hospital, and relied, maybe unintentionally, on driving me so crazy with her constant bellowing that I would eventually resort to pressing my call button and pointing the nurses, when they arrived, in her direction. Her complaints didn’t vary much: she wanted a cup of tea, which she wasn’t allowed as she may need surgery; she needed a poo (“I need a poo-ooooooo, I need a poooooo-oooooo”); and then, inevitably, she would soil her bed, bellowing indignantly that she needed her sheets changed.

My second roommate was a mystery to me, as I never saw him or her. The curtain remained permanently closed, only parting to allow a steady stream of visitors in and out. I tried to guess, based on the type of visitors: young and old, male and female, visitors came and went, but I never did figure out who was in there.

The third roommate’s plight just made me feel sad. An elderly lady, she needed a toe and possibly half a leg amputated. Her husband, always dressed in his Sunday best, a weathered suit and tie, faithfully attended her bedside for hours at a time, waiting patiently while she was wheeled off for tests and consultations. The wept together after the doctors departed the ward en masse in a sweep of white coats, and he gently kissed her each night when he left to go home. A deep sadness and inability to cope with old age, let alone their current predicament, seemed to cover them like a cloud.

I stayed in hospital for the remainder of the radiotherapy, being wheeled down to the Cancer Centre each morning in a wheelchair, then returning to the ward. I was happy to be there: I was feeling so much better now that I felt nothing but gratitude. The surgical ward was old and the facilities basic, but the nurses were outstanding and I felt so well cared for. Madeleine and Lucia came and visited me, and although Lucia was still hesitant and clung to Judi, she was not as distressed as she had been after the surgery, and Madeleine, who was now an old hand at these visits, was a huge source of comfort and unconditional love.

My last session of radiotherapy was on Friday 10th August 2007. I could only think of how glad I that it was over, and I know I expressed no thanks to the RT’s for their excellent care, which I felt terrible about afterwards. It was hard for me to think of radiotherapy as helping me. Whatever benefits from the treatment were invisible and impossible to prove. The scans had never shown the original tumour, no more tissue could be removed to be examined under a microscope. Believing I was free of cancer was an act of faith, not science.

It was also hard to believe I was “cured” when physically I had only ever been weaker when I was in ICU after surgery. I was being fed by naso-gastric tube, and was taking twelve different medicines. My mouth was a complete mess, my tongue and cheeks covered in ulcers. When I woke each day my first task was the put a finger in my mouth and scrape out the mucus seeping from the ulcers and burns. Taking the pills each morning and evening took an age, tentatively swallowing each pill, trying not to inflict any more pain. My skin was burnt from below my eyes to under my jaw, and far behind my ears on each side. I had lost 10 kilograms since starting radiotherapy, and was weak and exhausted.

Judi bought Madeleine and Lucia to the hospital to pick me up once I had been discharged. Madeleine had a huge bounce in her step as we walked through the carpark, she was so happy it was over and I was coming home. “You will never ever go to hospital again will you Mummy?” she asked. I didn’t know how to respond, who knew what the future would bring? “Well we hope not Madeleine,” I replied “we really hope not”.