2. Surgery
My surgery was scheduled for Tuesday 15 May 2007. The week before Andrew and I had gone to Hutt Hospital for a pre-surgery appointment. I met some staff, had a tour of the Burns and Plastic Surgery Unit, and talked to a nurse about what to expect when I woke up from the operation. She showed me the drains that would remove fluid from my face after surgery, the equipment used for a tracheotomy – which hopefully I wouldn’t need – and explained the various places that would be bandaged and painful. I met a speech therapist who would help me learn to swallow after the surgery, and the dietician who would make sure I got enough food, even if I couldn’t eat.
A young house surgeon took a full medical history and examined me. She tested my reflexes, the range of motion in all my limbs, peered into my eyes, mouth and ears, and poked and prodded my front, back, insides and outsides. I think she concluded there wasn’t anything wrong with me, except for the cancer, that is.
Ah yes, the cancer. Sometimes I managed to forget about for a whole hour at a time. I went back to work for a couple of weeks, to try and get life briefly back to normal. The girls were wondering why I was around the house all day, and although we knew eventually we’d have to tell them, this was the perfect way to delay things for a couple of weeks.
I pondered the odd comment ST had made to PB at the hospital that day – “I suppose we have to trust the pathologist” – and finally came to my own conclusion. “Do you suppose,” I said to Andrew one evening “that they didn’t actually see any tumour in the scans?” It was quite a strange thought. He was quiet for a moment, then slowly nodded. It would make sense of the comment, he agreed.
So, at the hospital at the pre-surgery appointment, when left in the room for a while with my file, I quickly flipped through, looking for the scan reports. Sure enough, the MRI report stated that although there was a shadow at the midline (whatever that was – the centre of the roof of my mouth?), it was doubtful this was the tumour and no tumour could be seen. An hour of head-pounding noise in the MRI machine, and they could see no tumour? The CT scan result was the same – no tumours seen. What on earth did this mean? Didn’t I have cancer after-all? Was all this preparation and upheaval for nothing? We knew the pathology results had been checked and then checked again, no-one was taking this lightly. ST would hardly want to go through with such radical surgery if he didn’t think it was necessary. What should I do with this information?
I was trying not to spend too much time researching ACC on the internet, trying not to get too focussed on the negative statistics I was finding. I had read a lot of sites that said ACC tended to recur, metastasising to bones and other organs, which was generally fatal. One day at work I was trying to explain the scans I’d had to my colleague M. I turned to the internet to find pictures of MRI and CT scanners. Then I decided to see if I could find pictures of scan results showing ACC tumours. I found a few, and we both felt strangely pleased to put a picture to the illness. I should have stopped there but I was compelled to click on a link I had stumbled upon, with more general information about ACC. What I read stopped me in my tracks. ACC had a survival rate of 20% at 15 years, it read. I think I actually started crying at my desk, overwhelmed with grief, mentally watching my children growing up without a mother. I grabbed my handbag and fled the office to wander the streets, sunglasses on, until I was composed.
The fear of leaving my beautiful girls without a mother stalked my thoughts night and day. I could hardly bear to think of it, but could almost think of nothing else. I talked to Andrew: he had discovered this horrifying statistic weeks before. He said he had found information putting the survival rate as high as 40%. Madeleine was 4, Lucia 18 months. Was I going to see them finish school, reach adulthood? Were they going to be bereaved teenagers, Andrew left to try and raise them as best he could alone? He is a wonderful dad, but I know nothing can replace a mother. Children need a mother. I needed my children. I WANTED to see them grow up, dammit, I wasn’t ready to give that up.
The day before surgery, we returned to Hutt Hospital to have a look at the ICU, which had been too busy for visitors the week before. We bumped into ST and his senior registrar who would be helping with the surgery, and went into a room to talk. Why, I asked, did the tumour not show up on the scan. ST didn’t know. Should I go ahead with the surgery? That was my decision, he couldn’t tell me what to do. There was no pressure, ST said, they could do a more extensive biopsy to be absolutely certain, and the surgical team would have the rest of the afternoon off.
What if I went ahead with the full surgery and it wasn’t cancer? Well, wouldn’t that be great, said ST. Not really, I thought, I’d have a mangled mouth for no reason. Suddenly all eyes were on me, I had to make a decision. “How do I decide?” I asked the room plaintively. There was sympathy in their eyes, but no response. I turned to ST; “what would you do in my situation?” “I would have the surgery” he said, as I knew he would. I agreed, I would have the surgery. We would trust the pathologist.
***
The next morning we were at the hospital early at 7.00am. I was second on the list, behind an elderly woman with a large red growth, the size of a golf ball, on her face. I was shown to a bed in a ward of four, and after a while the woman was wheeled back in, bandages on her face. I changed into a surgical gown and large paper knickers that tied at each side, and was given my pre-med. I kissed mum goodbye, and Andrew came with me as I was wheeled away. The pre-med obviously worked very well, because at this point my memory ends. Andrew said I became very dozy and sleepy, although I could still talk. I said goodbye to him at the doors to the theatre, and that was the last he saw of me until he visited me in ICU that night.
I was sedated until the following morning, breathing with the help of a ventilator. Andrew and my mother came to see me that night: I was a big mess of bandages and dried blood, my face swollen and obscured. They left again, subdued and anxious to see me conscious.
I woke up in a room full of light, noise and busy movement, but I couldn’t really see anything or understand what I was hearing. I could feel a tube in my mouth and in my throat, it felt horrible. A nurse leaned over me: “hello Emma, you’re in the ICU, you’ve come out of surgery and it went really well.” I could understand that, even though I couldn’t speak or communicate beyond a little nod.
It was hard in those circumstances to say I wanted the tube out of my mouth, but I did my best. I think I gestured a little with my right hand – this wasn’t easy, and it had approximately five needles in it, and at least three tubes pumping fluid. I soon discovered my left arm was unusable. It was wrapped in a heavy layer of bandages and couldn’t be moved. I must also have grunted a little. The nurse assured me the tube would be taken out soon.
Lying there, lapsing in and out of sleep, I slowly realised my left leg was bandaged too – for the skin graft – and really the only thing I could move was my right leg. I was overwhelmed by my total incapacity, and felt if only I could get this awful tube out, I would feel so much better. I remember a doctor arriving, and the nurse saying I was very ready to have the tube out. They chuckled and agreed to get on with it.
When the doctor finally said “All right Emma, we’re going to take the tube out now,” I blinked rapidly and nodded a bit to show my happiness. The tube was out very quickly, and immediately I knew something was wrong. I couldn’t breathe, I literally could not take a breath. I could feel the air fading from my lungs, total and utter panic set in. I couldn’t speak at all. I heard a loud drumming noise: my feet, thrashing at the end of the bed, as everything faded to black.
When my eyes opened again there was a mask on my face, another tube in my mouth. People surrounded the bed, I looked around, still terrified but now, thankfully, breathing. My airway had been too swollen for me to breathe, they explained, they had put in a small tube to keep it open, and I would need to keep the oxygen mask on. I turned my head to the side and started crying, overwhelmed by what felt like an almost fatal moment. A nurse held my hand and stroked my head gently. “Don’t cry,” he said, “I know you’re scared but you’re ok now, and honestly, crying will make you feel worse”. He was right, my nose was full of bandages and when I cried the inside of my nose swelled up and the bandages became tighter and more painful.
I tried to lie still. I was in a lot of pain, in my face, my arm and my leg, and really couldn’t move a centimetre without something hurting. I had a morphine pump that I controlled, but never really felt I was on top of the pain. I could only grunt, so had to write with a pad and pen with my right hand. It was awkward but I managed to communicate. I got exhausted quickly, and slept most of the time. When Andrew and my mother came to visit they told me everything had gone well. I held their hands and cried a little. Their eyes were full of sympathy and I wondered how awful I looked.
I was only meant to be in ICU for one night, but the unexpected problems with my airway meant I wasn’t going anywhere until I could breathe alone, which in the end was three days. Being in the ICU was incredibly tiring. The new tissue stitched into my mouth – the flap, as the doctors called it – had to be checked every hour. The nurses shone a torch into my mouth, and put a finger on it to check it was warm. I could get no more than about 40 minutes of sleep at a time for the entire time I was in ICU. It was also very noisy – other patients, their visitors and doctors talking, alarms and monitors bleeping, people coming and going. I was soon sleep deprived and emotional. I was too scared to take off my oxygen mask or remove the short tube holding my throat open, but every few hours saliva and mucous had accumulated in my throat and would have to be suctioned out, meaning the tube and mask had to be removed. One night nurse moved agonisingly slowly, not understanding how panicked I was and how much I needed them to be back. I dreaded his shifts.
Eventually the nurses gently coaxed me into trying sitting in a chair without the tube for a while, and when I managed this I agreed to go without it. The next night a nurse removed the oxygen mask while she gave me a bed bath and at the end, when I gestured towards the mask, asking for it to be replaced, she said that she’d been watching my monitors while the mask was off and I was breathing well without it, so could I perhaps try going without? I felt I had to agree, even though I didn’t really want to be without it. But by the next morning I was feeling quite proud of my progress, especially when I realised it meant I could be moved up to the Burns and Plastic Surgery Unit.
When I was finally wheeled into my very own private room in the Unit, I was delighted. It was full of flowers from friends and family, I had my own bathroom, there was a table beside the bed for all my things, and best of all there was a door that could be shut to keep out the noise of the rest of the world. A doctor came and visited, and told me that I had been given the room closest to the nurse’s station so they could keep a special eye on me. Of all the patients in the Unit, apparently I was the sickest.
Physically, I felt like an absolute wreck. I wasn’t using my morphine pump very often, so it was taken away, but I really still needed it. I was in so much pain I was given morphine by injection, and this meant I wasn’t sleeping well and felt very sick. I was taking so many drugs I felt like a zombie – morphine, codeine, Panadol, anti-biotics, anti-nausea drugs, and at night I was fed by a naso-gastic feeding tube. I had a catheter to drain away urine, and IV drips to keep me hydrated. There was still one drain taking away fluid from my face. On the second day in the Unit, the nurses encouraged me to get out of bed, and I shuffled slowly to the bathroom to look in the mirror.
My face was hugely swollen. There were bandages around my jaw, nose and neck, drains coming from my neck and a naso-gastric tube in my face. My hair was disgustingly greasy and lank. My teeth were yellow and my whole mouth including my tongue was coated in slime. I made my way slowly back to the bedroom to search for my toilet bag, and set about cleaning myself up a little. When a nurse helped me to have a shower later that day I could have kissed her, the feeling of clean hair and a clean body was such a relief. At every chance I got I scrubbed my teeth and tongue as hard as I could bear, trying to remove the disgusting scum that had built up. I didn’t tell the nurses, they were nervous about me putting a toothbrush in my mouth and wanted to oversee the mouth cleaning, but I couldn’t stand to be so unclean.
Even though I was in a private room, I was still not sleeping for more than an hour at a stretch. The flap checks and observations were now done every two hours, but this small concession did not help my sleep. I was even more sleep deprived and emotional. I kept up a happy face when my family visited, but with the nurses, especially the night nurses, I was moody and tearful, snapping at the slightest provocation. Hooked up to IV’s and a feeding tube, I couldn’t get out of bed and to the bathroom without help. The dietician had charted an enormous amount of water to be flushed into my naso-gastric tube at night, and now that the catheter had been removed I needed to go to the bathroom every hour.
By five days after the operation the packing inside my nose was very painful. It was a Sunday night, and ST had wanted the packing to remain for the weekend. The nurses and doctors sympathised, they thought there were probably a lot of blood clots inside increasing the pressure, but there wasn’t anything more they could do. By 9 o’clock I was in excruciating pain. I had already had some pain relief but every time I breathed in or out, moved my face, or swallowed, I felt as though a sharp blade was being pushed into my nose. I start to get unbearably hot, probably because of the pain and distress I was in. The nurse looking after me that night was all thumbs and no fingers: she dropped medication, bumped into things, forgot things and took forever to answer my buzzer.
I asked her to strip off my blankets and take my pyjama bottoms, frustrated that she hadn’t thought of these things herself. She bought me a fan, put it on a table across the room, and left to find out if there was any more pain relief I could have. She was gone forever. In tears, sweat pouring off me, I turned on my small TV to try and take my mind off the pain. Minutes, then an entire hour ticked by. Finally the nurse returned, and immediately exclaimed that the fan had flopped down – it was only fanning the floor. “Did you do this?” she demanded crossly. I could hardly believe it. I was completely incapacitated, immobile as well as dripping in sweat, and she thought I had leapt across the room on my one good limb and moved the fan? “No,” I snapped “I’m boiling over here.” She re-adjusted the fan and gave me some more morphine. The pain subsided and eventually I cooled down, then slept fitfully for the rest of the night. The next morning, with one swift movement that made me cry out in pain, ST pulled the packing out of my nose. A handful of bandages and blood clots fell onto my chest.
The speech therapist started visiting me that day, her mission was to help me learn to eat and drink again. When I could do that, I could go home. We started with apple puree. I put a spoonful in the centre of my tongue. The top of my mouth – the flap – had no sensation at all, and the rest of my mouth felt completely alien. I closed my mouth and tried to swallow the apple. I had no idea if I had succeeded, so the speech therapist checked and I was relieved to hear that the apple was gone. I started practicing eating different purees and progressed to mashed food. It took a long time to learn to drink water again, for some reason fluids were ten times harder than solid (albeit mashed and pureed) food.
My salivary glands seemed to go into overdrive, and I found myself drooling constantly. The saliva pooled at the front of my mouth and would eventually overflow, down my chin and onto my clothes. I took to wearing handtowels wrapped around my neck to soak up the liquid. It was distressing; I felt like a teething toddler or a senile old woman. I was embarrassed to be drooling when I had visitors, and held a cloth up to my face constantly.
My daughters came to visit. Madeleine was thrilled to see me, snuggling up on my lap and telling me all about pre-school and adventures with Nana and Daddy. Lucia had the opposite reaction – she took one look at her drooling mother, face swollen and mouth permanently agape, and screamed furiously, clinging to Judi our nanny. I was devastated, and when she left I closed the door and sobbed. When I stopped I was more determined than ever to get home before the weekend. I sat down and ploughed through every container of puree I could get my hands on, single-mindedly pursuing enough progress that the dietician would agree I could survive at home.
For some reason, I seemed to suffer side-effects from almost every drug that I was given. The naso-gastric feeding formula made me flatulent, and the next one made me vomit. The drug that was finally found to dry up my saliva made my vision so blurry I couldn’t see with my glasses on, but could only without them. The morphine made me nauseous and unable to sleep, and the antibiotics gave me diarrhoea.
But the best of all was the night, after seven days without a single decent sleep of more than three hours, that I begged the nurse to give me something, anything, to make me sleep. I had already had some morphine, and as usual it made me spaced out and able to nap only fitfully. The nurse bought me half a sleeping tablet. I settled down for a long and refreshing sleep. Instead, a short time later a group of circus performers appeared with a huge bag of coloured balls that floated around the room. To my right a red and white striped lighthouse grew out of the ground. There was a small beach around its base, with beautiful blue water lapping on the shore. On my left vines and large flowers grew up the walls, over the door, and down the other side.
I pressed the buzzer, and the nurse came bustling in.
“I think I’m having hallucinations.”
She nodded glumly, “Oh yes, that can happen sometimes”.
“Is there anything you can do?”
“No dear, you’ll just have to wait for it to wear off”.
“How long will that take?”
“Could be a few hours dear”.
Four hours and many, many unwelcome visitors later, I finally fell into an exhausted, dream filled sleep. I dreamt I was in the army, but I was being discharged. I had been put into a room by myself to wait for someone to take me away. When I woke up again, I was so confused I cried because my army career was over, hurt at being put into such a cold barren room, forgotten by my military colleagues. It was only the arrival of a nurse to do the regulation observations that bought me back into reality.
Still, ST and the retinue of colleagues he bought on ward rounds every morning seemed very pleased with my progress. One morning ST pronounced that as long as the dietician was happy, I could go home the next day. Buoyed by this unexpected news, I redoubled my efforts at swallowing liquids. Finally, I had a breakthrough: I could suck juice up through a straw from a juice box. The narrow straw and the pressure inside the box seemed to help. I was on my way, I was going home!!!
