Despite technological advances, the most useful tool available to a doctor remains their patient's voice. A person may not know the name of the disease they have but, by telling you their story, they will usually lead you to it. Part of this story may be delivered in the body's special language of physical signs, apprehended via observation and the doctor's examination. But of far greater importance are the patient's words, their speech, their voice.
If someone has no voice or no way of being heard, the process of diagnosing and treating them is very difficult. Sometimes this happens because a person is aphonic or unable to speak. In medicine, strokes, tumours and infections can all damage the area of the brain that produces words. In surgery, cancer may result in having to remove a patient's voice box or tongue. There are also psychiatric reasons for someone not being able to talk. At other times, a patient's voice may be present but incomprehensible. In these circumstances, new, oblique ways of communicating are often found.
I was packing things away in my bag one morning, pleased that clinic had finished early, looking forward to lunch. So when Janet the clinic nurse put her head around the door and said, 'Your last patient has just arrived. Transport came late to pick him up,' I said, 'Oh,' and thought 'Damn.' All I could hope now was that this unvouched-for appointment would be a quick one.
One glance at the set of notes on the shelf outside my consulting room made me realise that this was unlikely. They were thick like a phone book. My patient would either be medically complicated or a hypochondriac. Either way, goodbye lunch. I hoisted the slab of pages off the shelf and took it into my room for a quick look at the GP's letter of referral.
'Dear surgical colleague, please will you see this pleasant sixty-year-old gentleman with cerebral palsy associated with choreoathetosis. For the past six weeks, he has been experiencing constipation. Please could you rule out a serious cause for his complaint.' I felt an all too familiar sense of shame at my previous desire to get out of clinic and went to fetch Mr Dean from the waiting room.
I called his name. Two people, sitting next to each other, acknowledged my announcement. One of the men looked up at me. The other responded to my announcement with a strong, generalised writhing of the limbs, head and neck, and facial muscles, the movement disorder that the GP had mentioned in his letter. Choreoathetosis. From chorea, meaning dance. And athetosis, meaning incongruous.
The able man, whom I took for a porter or a nurse, pushed the disabled man into my room. The doorway was narrow and the wheelchair was wide. But the real problem was that it was difficult for Mr Dean to keep his limbs within the confines of the chair. They flailed vigorously, banging into the corridor walls. The transmitted effort of his helper, the intention we all had to get him from A to B, seemed to agitate him and exacerbate his condition.
Despite years of medical training and exposure, I felt embarrassed by this man's lack of control. I didn't know where to look. I made some silly comment or other about the sluggish progress of the NHS wheelchair. I have no idea what Mr Dean's response to this was. His attender had a composed face and he also admitted nothing by way of expression. The comparison between the facial chaos of the one and the stoniness of the other was marked. Between them, shared out, they could have made two very animated faces. Two clowns.
Finally, they were both ready. Mr Dean's movements had abated somewhat but despite his efforts to look at me, his neck remained powerfully extended, his head rotating on it as on some massive pivot. As if in sympathy, his helper looked down, also not meeting my eye.
Briefly, I introduced myself, and since Mr Dean was still trying to compose himself enough to speak, I tried to make a connection with his associate. He, however, still refused to look at me. I pressed on. 'Your GP has written to me to say that you have been having problems emptying your bowels lately.' I knew from reading the notes that Mr Dean was in no way mentally impaired, had a degree even. Nonetheless, I found it almost impossible not to enunciate my words in a certain unmistakable way, like you do to a child or deaf person. I wonder if this is inevitable when you have no idea how your communication is being received. You feel like you can't be getting through.
Then, though, Mr Dean did start to speak. I had never heard a voice like it. His head was still thrown back. He was struggling to still it. His tongue was moving in and out of his mouth wildly. I looked at this tongue. Because it was coming so far out of his mouth, you could see much more of the length of it than you usually can. It reminded me of my pre-clinical days when I had first seen tongues, lined up on the slab, ready for dissection, and had realised how very long they are. In normal life you just see the front part, lying in the bowl of someone else's mouth or your own when you are brushing your teeth. Mr Dean's looked hugely muscular and a bit frightful.
The noises that came from Mr Dean had beginnings and endings and for this reason alone I knew they were words. But nothing else was recognisable. Not a single phoneme. Uncertain of what I would do next, I hoped this must be some sort of warm-up that would resolve into a language that I might be able to comprehend. I felt the awkwardness of not being able to do what you usually do when someone is in mid-flow, talking to you. You nod and raise your eyebrows and sundry other things that collectively say, 'Yes. Go on. I'm interested.' How could I do this when I understood nothing? How could I not do this without looking rude or blank or prejudiced?
I was about to ask Mr Dean's helper if he could fill in the gaps, when I noticed that this man's head was tilted slightly to one side like a bird's. And then he started to speak in a voice whose timbre seemed curiously in tune with Mr Dean's slurred noises. The frequencies seemed the same and the words were all drawn out in the same way.
'Yeeeees. It waaaas baaad. Buuut nowwww it's betttterrr.' The noises and the helper's enunciated syllables seemed to join and make one noise, like two people singing the same note, like woodwind players tuning up on an A. The word sounds of one and the unworded ones of the other sounded thick. Like how Rick Astley sings, as if his mouth is full of cake. Or like an echo would sound if it happened somewhere soft.
My relief at hearing that this patient's symptoms had already gone mixed with my desire to observe more of the sympathetic communication between him and his associate.Mr Dean started again, as if intuiting my thoughts. Apart from the pauses between the sounds, which indicated separate words, I could decipher nothing. Like an auditory amanuensis, the helper intoned, 'Thiiiiiiinngs gooot better when I caaaame offff the laast medicine.'
As he said this I could hear the patient say 'Yeeeeessss' and then the helper joined in and said 'Yeeeessss' too. It felt like a buzzing and a humming. They carried on like this, the two of them in harmony. And this put the relationship between me and them into relief. Usually, I have acknowledged an interpreter as separate from the patient they are assisting. They have recognised me too with a sense of our being on the same team, two players for the NHS side. What set this interpreter aside from any other I have known is that he seemed to be doing his best to efface himself as an autonomous player. To be refusing a dialogue with me distinct from my dialogue with the patient or even a communication with facial gestures. It was as if he was Mr Dean's voice.
This sense I had was emphasised at the end of the thankfully very short and straightforward consultation. The helper rose to push Mr Dean from the room and I said, 'Have a nice day.' The helper said, 'You too,' in a dysarthric voice as his charge mouthed grotesquely. This encounter stuck in my head as an example of how someone with no comprehensible voice can still find a way to make themselves understood.
However, sometimes patients are less successful at getting their message across. Even if their voice is fine, they may find it hard to say what they mean. Worse still are those situations when a patient's voice works beautifully and delivers a clear message but nonetheless is not heard.
One morning, I was consenting people for the breast surgery theatre list. One set of notes remained in the tray. I often find myself looking at the sticker on the outside of the notes to see what the date of birth is. Somehow, I imagine that a person is too young to be ill if they are born after me. This woman was only twentysix. I immediately thought, oh she's probably having some little innocuous biopsy done, it's not likely to be anything big at that age. So when I looked her up on the computer so I would know what to consent her for, I was not prepared for what was planned: double mastectomy. God, I thought, as an image of my own naked breasts flashed before me.
My thoughts stopped when my hands found the right page in the notes. A letter from one of the general surgeons to the GP explained that Jane Manning had received a diagnosis of invasive ductal carcinoma of the right breast. She had been offered a wide local excision with axillary clearance of lymph nodes but had opted instead for a double mastectomy for the combined benefits of treatment and prophylaxis. Her mother had died of breast cancer at forty-five when Jane was just fifteen and she was desperate not to follow suit.
As I approached the relatives' room where I knew my patient was waiting, I glanced down at my own chest and was relieved to find it in something loose. I didn't want my breasts to show, to mock hers. When I walked in, though, I felt a sense of shame at the room in which she sat. It was yellow and the chairs were easy. A tactless Vettriano print on the wall showed a shapely woman dancing with her smart lover, while a lackey sheltered them from the invisible storm. She, the patient, was flanked on one side by a rack of leaflets bearing the title 'Your mastectomy' and some plastic flowers. On the other side of her was an older man, holding her hand in his hand in his lap.
She looked younger than she was and held her slim upper half straight like a dancer. She was wearing jeans and a long-sleeved grey T-shirt with a short-sleeved navy jumper on top, which looked like cashmere. I wondered if she had put her breasts in something so soft on purpose.
She wore no make-up or earrings. She had clear skin and eyes and her hair was pulled back from her face in a way that suggested she didn't need to make allowances. I thought that I would probably soon realise she was beautiful in that way that you sometimes do after a little pause. I introduced myself and sat down opposite her and the man I assumed was her lover, although she didn't seem to be leaning into him at all. Her body didn't respond specifically to my words. She had been ready since I came and simply remained so. But suddenly the vanilla room was alive with the noise that came from him.
'I am Philip Manning. I am Jane's brother.' His voice seemed to reach into every corner of the room in which we sat. Then he said, 'I am here to support her.' As he spoke, his eyes glittered and looked wide like the eyes of the dog in The Tinder Box, which are like windmills. In his already wide-open face. When I looked back at her, I began to distinguish that beauty I had thought would appear to me.
I explained, 'I'm here to tell you what we're going to do next week. To get your consent and to answer any questions you might have. Before I consent you for this surgery which I know you have chosen, I just want to remind you that we are able to do a much smaller operation for you if you would like.'
It would be wrong to say she moved her mouth as if to speak for I did not see this. Perhaps I just felt the air shift around her a little. In any case, Philip immediately jumped in and began to speak again. He gave Jane her hand back so that he could do this energetically.
'It may seem odd to you, Doctor,' he said in a slightly stagey way. 'Our mother had breast cancer. She fought a terrible battle and even though she had the tumour removed from one side, it still came back on the other. We've done our research and we've chosen this operation to make sure Jane survives this.'
She said and did nothing to disagree with her brother's pronouncement. I didn't want to make things worse for her by pushing her to speak if she didn't want to. I thought, all I can do is address myself to her, even if her sibling is speaking for her, even if he is her voice. So I turned to her and continued. 'OK. Well, it sounds as if you have given it a lot of thought. So I'll tell you what the operation involves.'
I detailed then, in terms as plain and unemotive as I could, that we would remove each breast in turn. We would send samples from each side to histology. Then we would close the defects. Immediately, I regretted using this automatic surgical word. Moving on, I explained that she would have drains coming out of her wounds when she woke. I then asked her if anyone had spoken to her about the future possibility of breast or nipple reconstruction.
Again, Philip spoke, 'We just want to get through all the treatment before thinking of the frills. We think that conversation is for much later.'
I was glad to pass the consent form over to her because I am quite sure he would have signed it for her if he could. She had a lovely hand, the writing and the fingers. I filed the form in her notes and was about to rise to leave the room when she opened her mouth and spoke. She did this quietly, but her words were precise. Each one had a pause after it, like a rest in a musical score. The syllables were like clear little bells. 'I have a tiny mole between my breasts. Right in the middle. Please, if it's possible to leave it there, could you?'
'Absolutely!' I replied with inappropriate cheeriness, because I was so relieved that she had actually asked for something, however small. Because she had spoken. I turned back to the consent form and in the section for naming the planned operation, next to where I had written the words 'Bilateral Mastectomy', I wrote in brackets, 'Please do not excise benign naevus on skin between right and left breast.'
The day of Jane's operation came and was sunny. I was to spend the morning assisting in theatre and then had the afternoon free for study. I had slept and eaten well and felt happy. 'On the Wings of Love' was playing on the theatre radio and staff bustled about getting everything ready. Checking instruments. Talking about weekend plans. I heard Jane arriving next door in the anaesthetic room, and then I heard the voice of my consultant, Mr Moore, introducing himself.
I went round to the sinks and slapped a sealed gownbag up on the counter. Then I added one for the consultant and another for whichever registrar would be joining us. I pulled apart the two plastic sides and tipped out the sterile pack. I did the same with my size 7 gloves, emptying them from their cellophane casing on top of the green sterile square. Then I tied the two ribbons of my mask behind my head and squidged the metal strip over my nose, which is like the bit that keeps the top of rubbish bags twisted, so that my face was snugly covered.
I turned on two of the six long-armed taps, arranged in three pairs along the wall-length sink, and adjusted them so that the stream of water that came out between them was the right temperature. I wet my hands and squeezed Betadine onto them by pressing the dispenser with an elbow. The radio was now playing 'One' by U2. By the time the song was in full swing, I had finished washing and had unfolded my gown and put it on along with the gloves. One of the scrub nurses was behind me fastening the ties all the way down the back. I thanked her and moved into the main room of theatre, hands crossed over my chest to preserve sterility.
The doors smacked with the sound of the anaesthetic gurney being pushed up against them and there she was, lying asleep on her back, arms by her sides. She looked as if she was already in her coffin. Except for the grace which animated her even in repose. Naked from the waist up, her slimness was pronounced. The outline of ribs could just be seen beneath her skin which was as clear as the skin of her face. Her breasts looked very small with her in this position, falling back into her narrow chest. I felt a tightness in my throat, which made me wonder if I was about to cry, although I had never wanted to cry in theatre before.
Then my heart really sank as I made out the unmistakable trilling voice of the female registrar whom I had been hoping would not be in attendance that day. Lucy Treacher, my least favourite surgeon ever! People often say that female surgeons are harder to work with than men. That they have had to be so tough to get to the top, that they are painfully exacting, especially with their female protégées. Personally, I have not found this. For me, this she-villain was one of a kind.
She came through from the anaesthetic room with our consultant and flashed me one of her smiles for his benefit. She had on her perfect make-up. Heavy black eyeliner, pink candy blush, lip gloss that highlighted her whitened smile. She was a tiny-framed, big-breasted young woman and she had a way of setting herself off to advantage. She wore her scrub top small and snug. Her bottoms were loose and rolled up at the bottom. The combined effect was that she seemed girlish and voluptuous all at the same time.
As the two of them scrubbed, I began to prep the patient. I was handed a swab on the end of the shiny tongs and dipped this into the bowl of brown Betadine. I then painted Jane's chest, up to her neck, down to her navel. I did this gingerly, noting her tiny mole, making sure I didn't hide it with too thick a layer of dark, antiseptic paint.
By the time I was unfurling the drapes to cover her head and abdomen and leave only the square of her chest available for view, Lucy was by my side, nudging me over with a carefully placed elbow. All the while, she continued to deliver to the charmed consultant a description of her excellent performance at clay pigeon shooting the weekend before. 'To be honest, I was a pretty good shot all round, Mr M. But my favourite was the rabbit trap. I just imagined all the clays were real bunnies and suddenly I was on fire! Blowing all their furry little heads off!'
Mr Moore emerged tall, smiling and delighted from the scrub anteroom, his strong arms outspread to keep his gown from falling off as he waited for the theatre nurse to do it up. He looked like he wanted to kiss his scrumptious little registrar for being so violent. Not unusually, he had not acknowledged my presence once by this time.
Preparing to redo the job I had already done, Lucy asked the nurse for another swab and soaked it in antiseptic. She then pulled it roughly across the sleeping girl's chest so that every time she released the pressure at the end of a horizontal sweep, Jane's breast bounced back to its original position. I felt embarrassed to see this slightly alluring sight before our six eyes. I also noticed that, as Lucy paused mid-sentence to look at Mr Moore, a small pool of Betadine collected around where the swab rested on Jane's chest. And that when she continued chattering and cleaning, this pool remained and soon dried so that the dark patch of brown obscured the less brown mole that Jane had mentioned to me the previous week.
Mr Moore made some rudimentary pen marks around the patient's breasts and then, asking for the knife, began to make the first incision. Dainty Lucy had pleased him. He said that he would do one side and she could do the other. Soon, Jane's right breast had been outlined by the knife, highlighted in a dripping red ring. Mr Moore positioned two skin hooks and passed them to me to hold, to tent the skin upwards so that he could progressively detach the breast from the chest wall. He did this with diathermy scissors, which look like small nail scissors with a wire attached to the back of them. When the blades appose, they cut and cauterise at the same time.
He was slick and within ten minutes the breast was attached by only a small pedicle to Jane's body. By now, my skin hooks had proved unequal to the task of holding the dissected tissue out of the consultant's way. I was holding her breast all squashed and a bit crumpled in the palm of my hand. Blood trickled in a stream down the inside of my wrist onto the plasticky gown, and then dripped off me and onto the drape. It collected in a green valley and was congealing there like a small garnet jelly.
I lost my balance slightly as the breast was cut off. It was like being in a miniature tug of war at the point when you fall back and realise you are on the winning team. The scrub nurse passed a shiny kidney dish to me and I placed the breast in it. I attempted to unfold it as I did this. For some reason, I wanted to deposit it in its comeliest form.
Then, I looked back down again and felt peculiar. Mr Moore was applying the diathermy forceps to the last oozing vessels and soon the area was dry. This red, dry circle looked flat on the operated side, like a child's chest. And the other side, with its remaining unsevered breast, suddenly looked round and womanly. But now the creature beside me was limbering up for her turn. It was the first time she had been quiet all morning. And I knew that now was the time that I should mention the issue of Jane's mole.
I had not spoken one word that day, so I cleared my throat. This sounded rude, as if I were grabbing longsolicited attention. Both my seniors turned to me in surprise as I made the noise and I said, my voice sounding very loud and resonant like someone talking on a learn-a-newlanguage tape, 'Did you see the bit on the consent form about her wanting to keep her mole?'
I don't know whether Mr Moore had been intending to move away at that point anyway, to show Lucy that he trusted her to get on with the next stage herself. But it seemed as if, as soon as my voice came out, he went to sit down. But 'Oh yes,' chirped she, 'I pointed your note out to Mr Moore just before we came through. We thought it was sweet that you were taking such an interest, although it did seem like rather an unorthodox use for the consent form to use it to describe the patient's little fancies. Are you sure you're in the right business, darling? You'd make a lovely GP.'
With that, she picked up the knife and held it towards the perfect blue ink sphere she had drawn around Jane's remaining breast. The dark ink line of her intended incision went right through the mole like a bypass through much-loved countryside. Her fisted hand was small and neat, the latex of her glove taut against her like sealskin. The blue line ran red as the blade stroked Jane's chest.
Silent again, I took two swabs and pulled them in opposite directions against the line as she cut through it, to ease her path. The fleet knife was now close to the middle of the sternum and I realised what I needed to do. I made sure, as I anticipated the arrival of the scalpel with my adjusted swabs, that I interpreted the line she had drawn to my own advantage and I put one of my swabs down so that its very corner lay over the mole. Almost as soon as I had done this, along came that sleek edge and slit just a mere breath away from the tiny mark I had defended. A disproportionate sense of relief stung my eyes. And the rest of the operation happened in a blur. Before I knew it, Lucy was securing two drains under the skin with tethered sutures. We were done.
I did not speak to Jane again. The conversations that took place on the ward rounds were usually between her and Lucy, and were about the amount of blood in her drains and, increasingly, when she could leave the hospital. And my shiny registrar was the surgeon who had removed her cancer. I would not have asked about that mole in any case. Perhaps her request had just been some sort of anxious reflex, some need on her part to say something in that room with her brother that day. But I was pleased with myself. I had saved for my patient the only thing she could bring herself to mention, the tiny mole that made her feel she would know herself, even after such therapeutic savagery had been performed.
Of all the disabilities a person may endure, perhaps none is more devastating than losing the power of speech. Aphonia is linked with a high rate of psychiatric morbidity and even suicide. Certainly, it is hard to doctor someone who has no voice. It is with words that patients are able to convey their needs, to let us know if we are helping them or not.
For these reasons, elaborate mechanisms for voice restoration exist in hospitals. There are mechanical, hand-held devices for laryngectomy patients or tiny latex Blom-Singer speech prostheses. There is a whole clinical discipline, known as speech and language therapy, devoted to this area.
But both the triumphs and the defeats of clinical communication may lie outside this remit. Sometimes, patients find their own significant ways of making themselves understood. And at other times, we doctors may deny our patients a voice through the unconscious but still brutal act of just not listening to it.