In April 2007 I was diagnosed with adenoid cystic carcinoma, a rare kind of cancer, in the roof of my mouth. This chapter of my life began in a very mundane and unremarkable way.
I was having a very busy time in the third week of March 2007. At work we were facing the biggest deadline of the year, filing the company’s tax returns by 31 March. Our nanny, who looked after our two daughters Madeleine (four), and Lucia (18 months), had just been admitted to hospital with a potentially very serious infection, cellulitis. We had family helping out, and a temporary nanny filling in some of the time. Every day was a hectic scramble to arrange childcare for the next few days, write instructions for what the children needed, and do all the extra little jobs our nanny did that we took for granted.
The week before, our new kitchen was supposed to have been installed. Instead, after completing half the installation, the installers had come to collect their tools and gone to “finish another job”. Our suspicions were raised and by lunchtime that day, after many increasingly frantic phone calls, we heard that the kitchen company had gone into receivership. So we were trying to find someone to finish the job with the pieces of kitchen we had, to create a vaguely functional kitchen, while we tried to figure out where the rest of the kitchen was and how much money we had lost.
The entire family was recovering from a nasty cold. It seemed to be going away for most of us, but in my case it seemed to be lingering, even getting worse. So by Thursday 22 March I really needed something to make it go away, so I could deal with the disastrous kitchen, the sick nanny, and the huge workload at work. My GP was fully booked that day, but I couldn’t wait any longer so I went to see another GP in her practice.
I remember so clearly what happened. The doctor asked me what bought me to see him, I explained about my lingering cold and pain when swallowing, and he told me to hop up on the exam bed. I sat up, opened my mouth and said “ah”, and he looked in my mouth. He took a step back and looked thoughtful. “What’s that thing on the roof of your mouth?” “What thing?” I replied. “There is a lump on the roof of your mouth, haven’t you noticed it?”
Cancer in Mouth
Immediately, I felt it with my tongue. Sure enough, there was a lump. When I pressed it with my tongue it was spongy, and it hurt a little,. “Didn’t you know it was there?” he asked. “No”, I replied, I had no idea, “what is it?”. He paused, thoughtful, but not concerned. “I have no idea”, he eventually replied. “Do you smoke?”
“No”, I replied, “Oh good”, he said. He seemed relieved and that set a small alarm bell ringing. Non-smokers get sick too. He prescribed antibiotics for the sore throat, then, leaning casually against the wall, pondered the lump. After a moment, he recommended I see an oral surgeon to have it checked.
Back at work, I flung the referral card on the desk and announced to my work colleagues that I had antibiotics for the sore throat, but, could they believe it, the doctor had seen a lump on the roof of my mouth and referred me to an oral surgeon. After every other thing that had gone wrong that month, this piece of news didn’t surprise me one bit but it did surprise them. They were all horrified but of course confident that it would be nothing serious. So much so that M warned me that I wasn’t getting out of work by discovering I had cancer.
That night, I got a good look at the lump. It was about 1 cm across, more or less oval, a bubbly pink swelling. It looked odd and the alarm bell was ringing a little louder. I turned to Google, always a frightening experience, and sure enough, every picture I could find on the internet that looked like my lump was cancer. The specialist appointment I had was three weeks away. Suddenly three weeks seemed far too long to wait.
That weekend, I rang my father, a dentist in Palmerston North, and asked if he could find an oral surgeon in Palmerston North who could see me that week.
So it was, that on Tuesday 27 March I found myself, at 8.30 in the morning, at the rooms of PL in Palmerston North. PL is a softly spoken, polite man, and like most surgeons, does not waste words. After asking me how I came to be in his rooms, and briefly examining the lump, he stood back, leaning on a bench. His manner was calm, but his words were terrifying: he was going to refer me to see an ear nose and throat surgeon, an ENT. He didn’t know what the lump was but it was probably a tumour, maybe benign, maybe not. I would need to have the lump biopsied, to find out for sure. This was a procedure that would need to be done under a general anaesthetic.
I could hear what he was saying, but could not understand it at all. I sat up from my slightly reclined position, which suddenly didn’t seem adequate to understand what was happening. I leaned forward, looked at PL. “So, sorry, are you saying that this is either a benign tumour or its cancer?”
It could be something else, but essentially yes, this was what he was saying. Suddenly the worst news possible seemed to actually be real. I couldn’t believe it was real, but PL was just continuing the conversation, making arrangements for me to see an ENT, instructing me on where I could go, telling me he would write a referral letter. I stood on the edge of the reception area, my eyes full of tears, gripping a tissue for dear life, while receptionists and nurses gave me sympathetic looks and made hushed phone calls. Eventually the appointment was made, a bill was proffered, my credit card taken and returned, and I was outside the front door, blundering towards the car.
I was whimpering, starting to sob, and as soon as I opened the car and slumped into my seat, slamming the door behind me, I disintegrated. I was sobbing, gasping, my breath coming hard and fast as though I had just sprinted 100 meters. My arms were flailing, I felt faint, and even though I was sitting down I felt so lightheaded I had to rest my head on the steering wheel. I was utterly panicked, and felt that I just couldn’t breathe. My arms were windmilling about, I was lifting my head staring out the windscreen in panic, resting it again. I told myself I had to breathe deeply, to calm down, and stop panicking. I tried to breathe deeply, slowly, and after a few moments it started to work, my breath did slow, and finally it seemed more normal. I could ring Andrew and I did, the sobs starting again, I have no idea what he understood and what he thought. I asked him to see if he could make me an appointment in Wellington to see an ENT urgently, could he call me back? I would go to Dad’s surgery.
I drove the 500m back to Dad’s surgery, went inside, and was led, crying to the laboratory. Dad arrived, his mask pulled quickly down under his chin, concerned. Soon his day was ruined too. He left me to make calls – he called my mother, he called PL, and he cancelled the rest of his patients for that day. He was in control and I just sat and cried, drank a cup of hot strong tea his nurse made me, and waited for my mind to catch up. Eventually we went back to Mum and Dad’s home, Mum joined us and we all sat about having more tea, neither of them wanting to bring up the elephant in the room, yet desperately wishing I would so that they could try to make some sense of it all. Andrew left Wellington to come and pick me up; I went to bed and slept solidly for two hours. When I woke up, it was still real.
After two agonisingly long days, we saw PB, the ENT on Thursday 29 March.
PB is also typical of the surgeons I have met: to the point, matter of fact, and not one to spare a patient’s feelings. He thought there was a good chance that the lump was not a tumour, and recommended immediate surgery to remove or biopsy the lump. Hugely relieved, we said this was much better news than PL had delivered. ‘What was that?’ enquired PB with a faint sneer, ‘that it was cancer?’
The biopsy was booked for the following Monday, 2 April.
The family was so excited that PB was more positive. He had put the odds at a 60:40 chance that it was a harmless growth that could simply be peeled off. Suddenly the huge cloud hanging over us all seemed to disappear. My father happened to be in town that day: after his conference had finished he came over and gave me a huge hug. We could hardly stop smiling.
The following Monday I went to hospital to have the lump biopsied. We were disappointed to be told after the surgery was complete that PB hadn’t been able to remove it all after all, and that he didn’t know what it was. We would have a 10-day wait for the test results.
Waiting was awful. The initial excitement over PB thinking it was probably nothing sinister eventually dissipated, as the reality that he didn’t know what it was sank in. I started having trouble sleeping, and watched a lot of terrible television at 1 o’clock in the morning.
On Wednesday 11 April, in the afternoon, I was alone at home when the phone rang. It was PB and, true to form, he got to the point. He asked how my mouth was, and when I said it was getting better, his response – “Is it?” – was guarded and full of foreboding. He said he had bad news: it was definitely a malignant tumour. The pathologist was still working on typing the cancer precisely, but thought it was adenoid cystic. I was to come and meet him at 7.30 the next morning with Andrew. I hardly said anything, except “Shit” over and over again. Eventually I asked if this cancer would kill me. No he said, but I was in for a pretty awful six months.
I don’t think I have the talent as a writer to describe what it was like to get this news. I remember reading an account by a man who was in a building in Baghdad when a huge bomb exploded inside it. He said that to start with, he had no idea what had happened. There was a huge noise, and he temporarily went deaf. He started moving towards the noise, and came upon evidence of destruction: furniture fallen over, windows blown in. As he got closer, the destruction got worse: walls blown down, ceiling caved in. There were people injured, people dead, people blown apart. Eventually he realised a bomb had exploded. His hearing gradually returned, he could hear screaming, moaning, shouts and alarms. It was only as he left the building that he could see the true scale of the disaster. The building had been demolished, and hundreds of people were killed. Life would never be the same again.
I think this is what it was like to find out I had cancer. To start with, although I knew I had this disease, I was too shocked to comprehend it. My emotions were up and down. One minute I would be perfectly happy, the next I would be in floods of tears, in the absolute depths of despair. One day Madeleine drew a picture of her and me. After the girls went to bed I sat curled up on the couch looking at it, and wanted to pull a blanket over my head and just dissolve.
I think in those early days that Andrew was suffering more than me. I went into a slightly odd space where I stopped reacting. I thought about it constantly but I wasn’t in pieces all day long. I cried sometimes but not for long. I was just numb I suppose. I wanted to be alone, to just keep busy and not talk about it. It seemed to work for me at the time.
To be completely honest, I spent all day finding reasons to go out, to avoid my daughters. I wanted to sit and hold them constantly but I could almost not be in the same room as them. My emotions just flowed straight to the surface when they were around, especially Madeleine because she was older and more perceptive. Once Madeleine saw I was upset and asked me what was wrong. I couldn’t even speak, and eventually managed to say I was just a bit sad. She said, “Why are you sad mummy?” and I literally couldn’t utter a word. Luckily she got distracted and moved on to something else. I knew we’d have to tell her something eventually.
There was one more thing that made the diagnosis so devastating. One month before, I had been to the funeral of a school friend, E, who had died of a form of cancer I had known only as ACC. It had first been diagnosed 15 years before, and had eventually metastasised to her bones and liver. She had died at 32.
In the midst of that terrible phone call with PB rang, I had written the words “adenoid cystic” on a piece of paper, and that evening I decided to Google it, and find out what it was. It sounded to me like the first two words of a three-word name. I typed in “adenoid cystic”, hit return, and was suddenly presented with a page of results that all included the words “adenoid cystic carcinoma” and “ACC”. In total shock, I slammed the laptop cover down, staring wide-eyed at Andrew. “It’s the same cancer E had, it can’t be, it just can’t be”. We just looked at each other. PB had said this cancer wouldn’t kill me. It had killed E.
The next morning, Andrew and I meet PB at his rooms. He explained that there were two possibilities, adenoid cystic carcinoma, or a low-grade tumour. With the first, I would need further surgery & radiotherapy, with the second just surgery. Of course, with the first there is always the possibility of an ending like E’s. He was very shocked that I knew her. He obviously knew her well and treated her. The gloves were off now, he couldn’t soft-pedal this news or shield me from the worst. I knew what this disease can do.
The following Monday, it was confirmed that the cancer was definitely ACC. I had been expecting the call all day, although PB had said it would take until Wednesday. I had stayed out of the house all morning, and by early afternoon was starting to think of other things. As I pulled into a car park outside a furniture shop (did I need to go there? Not at all. But browsing sofas was certainly a better way to pass the time before eventually going home) my cell phone rang. PB’s wife (and receptionist) passed on the news. I rang off, sat for a moment, then swore loudly. It was not a surprise – I felt PB had been preparing us for this news. I rang Andrew and he was worried about me, he didn’t think I should be alone at a time like this. I only wanted my own company. It might not be the best way of coping, I explained, but it was how I was coping and I was going to stick with it for now.
I drove to Wellington’s Oriental Parade, and sat in the wind, looking back at the city I had lived in for 11 years. To my far right, I could see Thorndon, the suburb I had lived and worked in when I first moved to the city, and looking around the curve of the harbour, I could track my progress: I could see every office building I had worked in, recognise every suburb I had lived in, I could see hills I had climbed and beaches I had visited, and I had made hundreds of visits to this very waterfront, with so many different groups of friends, each marking a different phase of my life here. At the furthest point on this curve, geographically and symbolically, was the place I sat now, contemplating my past and my very frightening future.
A few days later I had my first appointment at the Wellington Hospital Cancer Centre. I was terrified and emotional; before I entered the building I stopped and cried on Andrew’s shoulder. I couldn’t believe I was doing this. A large and sombre collection of doctors entered the examination room. There were more tests to be performed, then I was going to need surgery and radiotherapy. The tumour was still being tested; currently it was considered low grade but that could change. I would be back in two weeks for more information. There were no more answers.
The MRI, a scan of my head, was a long, loud and claustrophobic experience. Essentially it was like sticking a rubbish bin on my head, then lying down and crawling into a wheelie bin next to a jackhammer, for an hour. With a needle in my hand and More FM blaring in my ears. I couldn’t shake the vague feeling that the technicians had forgotten me and gone home. The CT scan was quicker and quieter.
The next appointment was odd. PB was there, and ST, the plastic surgeon who was to perform the surgery. At the start of the appointment, they looked at each other, seemed to shrug, and ST said, “Well I guess we have to trust the pathologist.” I didn’t realise until later exactly what that meant.
The two men agreed that major surgery had to go ahead, and by the end of the appointment it had been booked for 15 May, two weeks away. PB was strangely insistent that I needed surgery. We knew that, had always accepted it, and I thought it was a little odd that PB was emphasising this so much. “If you don’t have surgery,” he intoned, “this cancer will kill you.” All we cared about was whether the cancer had spread beyond the primary site. PB reassured us that there didn’t appear to be any evidence that it had. Our relief was palpable, all the details after that seemed irrelevant and bearable.
ST explained the surgery, and although I was feeling relieved I was shocked at how extensive the surgery would be. The roof of my mouth would be removed, to hopefully remove the entire tumour. A new soft palate would be constructed using tissue from my left forearm and my left thigh. Veins and an artery would be taken from my left arm, and would connect the new soft palate to an artery in my neck. I would be in intensive care for one day, and in hospital for ten days in all. I would have to learn how to swallow again, and my speech would certainly be affected.
We went home to prepare.
