Pandora's Helix

Two

Neef stayed behind for a few minutes with Andrew D’Arcy and Tim Heaton to discuss suitable times for a meeting with the people from Menogen Research.

“How come we’ve never heard of them?” Heaton asked D’Arcy.

“Menogen are one of the many Biotech companies set up in the early eighties when venture capital flowed in like champagne at a wedding. Genetic Engineering was the thing to sink your money into and everyone wanted to get in on the act. Unfortunately for most of them, things didn’t move as fast as the hype suggested. Many companies went to the wall when funding was withdrawn.”

“What went wrong?” asked Neef.

D’Arcy shrugged his shoulders and said, “I suppose a number of things were to blame. Investors were looking for quick profits and when that didn’t happen they started getting restless. They felt they’d been conned but that wasn’t really true. The scientists had just been over-optimistic; they kept hitting problems they hadn’t envisaged and everyone had underestimated the amount of red tape involved in moving research from the science lab into the real life environment of a hospital. This hurdle is much higher for the biotech people than the drug companies because of the moral implications involved in gene swapping. Everyone wants to have their say. Ethics committees abound.”

“But Menogen obviously survived,” said Heaton.

“They did,” said D’Arcy, “They were bright enough not to get into competition with the big boys. A big problem at the beginning was that a whole lot of companies tried to do the same thing. They all wanted to clone interferon and human insulin and there could only be one winner’s name on the patent when it was filed. Menogen opted out at the very start and concentrated on less ambitious projects. They did very nicely out of cloning blood factors and coming up with new diagnostic kits. That, not only kept them in business, but enabled them to employ some hot-shot molecular biologists to develop the business. It seems this investment has paid off. They’ve come up with several new gene delivery vectors and they are running strongly in the Gene Therapy race.”

Heaton leaned forward conspiratorially and said, “I know that Gene Therapy is the latest thing and all that but... what exactly is it?”

Neef smiled and said, “It’s a technique where a functioning gene is inserted into a patient’s cells in order to correct a deficiency in their own genes. Alternatively it can be used to introduce a new function altogether to the patient’s cells.”

“But surely that means you’ll be altering the genetic make-up of the patient?” said Heaton.

“To a very limited extent,” said Neef. “No one is trying to alter germ cells like sperm or ova. There’s no question of introducing heritable changes, just localised ones to help individual patients and believe me, that’s proving difficult enough. The whole business is still in its infancy.”

“But it’s going to be big in the future,” said D’Arcy.

“There seems little doubt about that,” agreed Neef.

“So Menogen Research would like to try out this technology on our patients,” said Heaton.

“That’s the general idea,” replied D’Arcy. “They were honest enough to admit that they’d approached University College Hospital first but had been turned down on the grounds that Uni College have their own Gene Therapy initiative run by their medical school.”

“Did you ask them about the paperwork?” asked Neef.

“It’s all in order as far as licenses and safety certificates are concerned. Of course, it will have to be passed by our own ethics and safety committee, once we find out the details of what the company have in mind.”

“Exciting,” said Heaton. “Don’t you think so, Michael?”

“Absolutely,” agreed Neef, feeling that this was the response that Heaton required.

“The cutting edge, that’s where we want to be.”

D’Arcy looked at his watch and said he had to go. Neef took the opportunity of being alone with Heaton to warn him about the imminent bad publicity he felt Eve Sayers was about to bestow on them.

Heaton shrugged philosophically. “It’s been coming. Ever since the interview with Mrs Torrance last week, I had the feeling that the paper was going to get involved. It looked too good an opportunity for them to miss. I imagine it was a toss-up between sponsoring a trip to Disneyland or lashing out on private medicine. Unfortunately for us it’s going to be the latter. Still, we’ll survive.”

Neef didn’t mention anything about losing his temper with the journalist but he reminded himself that Heaton wouldn’t have done that. He was far too smooth.

“Incidentally, Michael,” said Heaton as they left the board room and he ushered Neef out first. “I am aware that you have remained within budget for the last year and a half. I’ll make a point of bringing this point up at the next meeting of the pharmacy sub-committee.”

“I’d be grateful,” said Neef. “I feel sure the American drug is worth trying.”

“That’s good enough for me,” said Heaton. “We’ve got to do our best for our patients, even the poor little blighters in your unit. Let’s hope this thing with Menogen works out. It could be good for everyone.”

Heaton gave a last smile and walked off in his usual confident gait. Neef watched him go and permitted himself a wry smile. That was how it was done, he thought. Heaton would get him the new American drug if he played ball with Menogen.

Neef looked at his watch and saw that it was five thirty. He walked slowly back to the unit and looked in on Sister Kate Morse in the duty room of Oncology One.

“Hello stranger,” she said when Neef put his head round the door.

“It is getting a bit like that, isn’t it,” said Neef, pulling out a metal framed chair and plumping himself down wearily in front of her desk. “How are our patients? Maybe I’ll get round to seeing them soon!”

Kate Morse smiled indulgently. She was a pleasant looking woman of an age with Neef, married with two children of her own and a husband who was chief technician in the pathology lab.

“The Martin boy has had a bad day and Lisa Short has started going downhill as we feared. Lawrence called her parents this afternoon. They’re coming in. Lawrence said he’ll see them and sit with them; he’s on duty this evening.”

Neef nodded. Lawrence Fielding was his senior registrar and largely responsible for the day to day running of the unit.

“Everyone else is holding their own. Freda and Charles have shown definite signs of improvement.”

“Good. I looked in earlier with a visitor but I didn’t have time to talk.”

“I heard,” said Kate meaningfully. “A journalist.”

Neef saw the knowing look on her face. He said, “It’s brace yourself time again, I’m afraid.”

“I’ll have a word with the younger nurses,” said Kate Morse. “They always take it worst when they suddenly find out they’re part of an uncaring organisation that always puts money first and doesn’t give a hoot about the patients.” There was more than a hint of venom in her voice.

“I’d be obliged, Kate,” said Neef, getting to his feet. “Maybe I should have a word with our junior doctors. How are they getting on, by the way?” There had been a staff rotation two weeks before when two new housemen had been appointed to the unit for six months. Neef had not seen much of them.

“They’ll do,” said Kate. “They’re taking it all to heart but that’s no bad thing at this stage. It’s the ones who take it in their stride that I worry about.”

“Me too,” agreed Neef. “I’ll have a walk round before I go.”

Kate Morse got to her feet to accompany him but Neef raised his hand. “No,” he said, “just a little walk round on my own.”

Neef went first to the side room to where Lisa Short had been moved. One of the nurses was with her, making her more comfortable although she seemed too sleepy to notice. The nurse stood up when she saw Neef enter but he held up his hand to indicate that she should continue. “I just popped in to say hello,” he said. “How is she?”

“Dr Fielding increased her painkillers earlier but he wanted to keep her conscious if at all possible. I understand her parents are on their way. She seems fine at the moment, just pleasantly drowsy. No pain.

“Never-never land,” said Neef, his face tinged with sadness.

Lisa’s eyes flickered open and he smiled and took her hand. “Hello there,” he said gently. “Mummy and Daddy will be here soon.”

The child’s mouth made an attempt at a smile but she was very weak and her eyes closed again. Neef lifted her medication chart from the hook at the foot of her bed and noted what Lawrence Fielding had written her up for and at what time it had been given. He checked his watch and said, “Let’s hope her parents make it within the hour.”

The nurse nodded, allowed herself a brief moment’s for reflection then set about busying herself rearranging toys along the back of Lisa’s locker. She had worked in oncology for eight months. She had learned how to cope.

Neef continued round the unit checking charts and scheduled treatments for the following day. John Martin was supposed to start a course of radiotherapy in the morning but as Kate Morse had reported, it had been a bad day for him. One of the housemen, Tony Samuels, was with him.

“How’s he doing?” asked Neef.

The houseman hadn’t heard Neef approach and was startled. He got to his feet, nervously feeling at his tie.

“Sorry, I didn’t mean to startle you,” said Neef. “How is he?”

“Comfortable for the moment,” replied Samuels, regaining his composure. “I think it’s just been a bad reaction to chemotherapy. We may have to consider changing it. What do you think, sir?”

“Not just yet,” replied Neef. “We’ll keep him on standard primary regimen for another couple of days. See how he gets on. If he still reacts badly, we’ll think about changing then.”

“What about his radiotherapy tomorrow?”

“Cancel it,” said Neef. “Poor kid’s got enough on his plate right now. We’ll think again about that in a couple of days as well.”

“Very good, sir.”

Neef saw that Tracy Torrance had been moved to a side room and guessed why. He looked round the door and had his suspicions confirmed. The floor was almost covered in cuddly toys that had been sent in by readers of the Evening Citizen after the first story. He knew Tracy’s parents wouldn’t be here this evening; they were appearing on a local television programme. He himself had been asked to appear but had declined, preferring that a ‘hospital spokesman’ be used instead. “Hello Tracy,” he said.

The little girl smiled up at him and he felt pleased that she knew nothing about the political and show-business wrangling going on over her illness.

“Who have you got there?” he asked.

“Mr Raggins,” replied the child, holding up the rag doll she had come in with. She hadn’t come to terms with the host of brand new cuddly strangers surrounding her. This was a feature of terminal conditions in children. They lost their interest and excitement in new things, preferring to cling to the old and familiar.

Neef saved looking in on Neil Benson till last. He tried not to have favourites among the children, or at least not to show it, but he did have a soft spot for Neil. “Hello Tiger,” he said when the boy saw him. Neil held his arm up in the air and Neef knew this was the signal to present him with his own open palm. Neil brought his hand down on Neef’s in his own version of a high-five. Neef smiled. There was something about Neil, an inner strength, a resilience that went way beyond his years or prospects, come to that. There seemed little doubt that Neil’s tumour, a malignant melanoma, was going to end in his death but for the past three weeks it had stopped growing. Daily measurement of the affected area had shown a plateau on the graph. Unfortunately the tumour had not shown any sign of regression but they had been afforded a breathing space and there were so many non-medical factors at work in cancer therapy that it was unwise to predict anything with an air of complete certainty.

Neef finished his round and popped his head round the door of the duty room to say, good night to Kate Morse.

“You’re off then?”

“Some days feel like they’ve had thirty-six hours in them. This has been one.” said Neef.

“Chin up,” smiled Kate. “Most people know that you can’t believe all you read in the papers.”

“I hope that’s true, for all our sakes,” said Neef.

“Don’t take it to heart, Mike,” said Kate Morse softly. “It’s what’s really true that matters, not how these people twist or misrepresent things.”

Neef nodded and said, “Thanks Kate. Maybe you and Lawrence and I could have a meeting tomorrow? There’s a biotech company interested in carrying out a Gene Therapy trial on our patients. I’d like to know your feelings before I talk to them.”

“Sounds interesting,” said Kate. “Anything resembling progress is always welcome.”

Neef drove home slowly. The evening rush hour was long past, the sky had cleared, the wind had dropped and evening sunshine was filtering through the leaf canopy on the long narrow lane leading down to where his cottage nestled at the foot of a steep single track road. It was no more than eight miles from the hospital. Getting this cottage was the luckiest thing that had ever happened to him, Neef reckoned.

He had just come back from the States to take up the job at St George’s and was desperately looking for somewhere to stay. He had spent another fruitless evening looking at over-priced flats in the area when he had taken a wrong turning on the way back to the hotel where he was staying and found himself at the foot of the hill. He had been looking for a place to turn the car round when he had come across the cottage lying derelict among tall grass and wild rose bushes that were threatening to engulf it. Intrigued, he had looked around and about and discovered that a railway had once run along the base of the hill. The track had long since been removed but he found evidence of ballast and it was possible to follow the route of the line through the undergrowth. The location of the cottage said that it had probably had something to do with that railway, perhaps the home of a signalman or level crossing operator. After checking with British Rail and discovering that they had forgotten about the existence of the line and the cottage, Neef had badgered them until they had come up with the deeds to the property and, after a lot more prompting; they had finally agreed to sell it to him. He had spent the last three years making it habitable and comfortable.

Neef parked his Land Rover Discovery on the piece of land he had cleared beside the cottage for that purpose. He needed a four wheel drive vehicle to get up the hill in winter. This neck of the woods was definitely not a priority on the Council’s gritting schedule.

As he opened the door, the lady of the house came to meet him. Dolly was soft and sleek and very elegant. She moved silently and with a graceful sinewy gait that always evoked his admiration. She also had a beautiful, thick, furry tail. Dolly was a cat, but not just any cat as Neef was always keen to point out. Dolly was a Maine Coon.

Dolly brushed up against Neef’s legs and then again as he stooped to stroke her. “I take it this means your bowl is empty,” he said. He was more used to being ignored. “Let’s get you something.”

Dolly followed Neef to the kitchen where he opened a tin of cat food for her and carried it out to the back porch where her bowl was kept. Dolly scampered round his feet and waited impatiently until Neef had emptied out the contents; she almost pushed him out the way in her anxiety to start eating. Neef stood up and looked down at her. “I take it I’m no longer required,” he said.

Dolly did not interrupt her meal.

Neef poured himself a large whisky and settled down in an armchair that looked out through French windows to the back garden. The evening sunshine was now deep yellow, almost orange and he wished it could have been the end to a better day. He toyed with the idea of not watching the TV programme featuring the Torrance couple but thought better of it. It would be as well to know the worst. He turned on the TV.

The Torrance report was the third item in the local news bulletin and started with a summary of the facts, then the camera moved towards Mr and Mrs Torrance sitting, facing a staff reporter.

“But you don’t accept that your daughter’s condition is beyond help, do you, Mrs Torrance?” the reporter asked.

Mrs Torrance, a slight woman with dyed red hair and gimlet hard eyes, held a handkerchief to her face while her husband, much taller and broader and with a vacant expression, put his arm round her. “No, I don’t,” she almost whispered.

“You believe there is a treatment that would help Tracy but that she is not getting it. Is that correct?”

The woman nodded silently, keeping the handkerchief to her mouth.

“Why not, Mrs Torrance?” asked the reporter gently.

“Money. They won’t treat my little girl because it’s too expensive.”

‘They’re going to let her die,” Mr Torrance butted in.

“I know this must be very distressing for you,” continued the interviewer, “but the hospital of course, deny this. They maintain that the decision not to treat Tracy was made entirely on medical grounds. Money was not a consideration. What do you say to that?”

“They bloody would, wouldn’t they?” retorted Mr Torrance. “Ever since they became... what do they call it?... A Trust, a bloody Trust, it’s money, not people they’re interested in.”

The interviewer turned to camera and said, “This afternoon, I put this point to John Marshall, spokesman for the St George’s Hospital Trust and he had this to say.”

John Marshall, press officer for the hospital and looking a smooth as the TV professionals themselves, offered his sympathy and understanding to the Torrances and made a good job of insisting that the decision had been made for medical reasons. Neef silently gave thanks.

The filmed interview with Marshall ended and the studio interviewer came into shot again. “In the last half hour,” he announced, “this programme has learned that a newspaper, The Evening Citizen, has decided to step in and pay for private treatment for little Tracy. What do you think of that Mrs Torrance?”

The floor camera zoomed in to capture the tears as they flowed down Mrs Torrance’s face and her shoulders shook silently. It then moved up to her husband who was also moist eyed.

“There are no words,” began Mrs Torrance.

“No words,” agreed Mr Torrance, with a shake of his head.

The camera drew back for the interviewer to hand back to the main desk with a look of practised concern.

Neef had watched the whole thing without a flicker of emotion. He turned off the TV using the handset and gave a sigh of resignation before downing the remainder of his drink. “Momma told me there’d be days like this,” he groaned as he got up and went through to the kitchen. There was a decision to be made. Should he make himself something to eat or should he have another drink? He poured the whisky and paused to put some music on the CD player before settling down again to gaze out at the garden. The music was Albinoni. In a few minutes the sadness would come as thoughts of Elaine returned.

Neef’s wife, Elaine, had died nearly four years before of cancer of the liver. They had been married for seven years. There were no children. His rehabilitation had been slow but time had done its bit and taken the edge off the pain he had once thought unbearable. Still, when he listened to Albinoni, Elaine’s favourite, waves of sadness would wash over him and rekindle the pain of her loss. He put his head back on the chair and looked up at the ceiling. “I still miss you,” he whispered.

The music finished and left a sudden vacuum in the room. Neef brought his head up from the chair back and felt as if he had just landed after a long flight. He was back on the ground; there were adjustments to be made. His drink was finished and he had things to do. He had a life to get on with. He would make himself something to eat and then he would catch up on reading the medical journals, particularly those dealing with Gene Therapy.

Just after nine thirty, the telephone rang. It startled Neef who had been deeply into an article on the Gene Therapy Treatment of Cystic Fibrosis. It was this treatment that University College Hospital had come to grief on when they had tried it last year. The results had not been good, with none of the patients on the trial showing lasting improvement and several of them showing strong inflammatory reactions to the treatment. It had all been a big disappointment, not only for the patients and their relatives but also for the hospital which had attracted lots of publicity at the time for their pioneering work and for David Farro-Jones, a friend of Neef’s and the leading molecular biologist from their medical school who had set up the trial.

“Neef.”

“Dr Neef?” asked a woman’s voice. “Dr Michael Neef?”

“Yes, who is this?”

“It’s Eve Sayers. I found you through the phone book.”

Neef felt his heart sink. Hadn’t this woman done enough damage? What more could she possibly want? He tried to work out what new scheme she might have come up with to pay him back for what he had said to her. “Why?” he asked bluntly.

“I know I’m not exactly flavour of the month as far as you’re concerned...”

Neef remained silent as if to affirm this.

“But it’s been preying on my mind...”

“What has?”

“Everything really. You, the unit, the little boy, Neil. What you said. Everything.”

Neef was still very much on his guard. “Would you please come to the point, Ms Sayers,” he said. “I’m a bit busy at the moment.”

“Dr Neef, I’m finding it very hard to say what I want to say on the telephone. Could I possibly come over and speak to you personally?”

“I think not, Ms Sayers, I really don’t understand what it is that you want from me.”

“It’s simple really, but oh so difficult. I just wanted to say that I was sorry.”

Neef could hardly believe his ears. “Sorry?”

“It’s true,” said Eve. “For the first time in my professional life I’ve been feeling ashamed of something I’ve done and I wanted to apologise. I just didn’t understand.”

Neef couldn’t rid himself of suspicion which made a response difficult.

“I’m sorry I can’t stop the story going into The Citizen tomorrow. Things have gone too far already. My editor saw his chance to announce the private treatment angle early and get publicity for the paper on television this evening. The Torrances were being interviewed.”

“I saw them.”

“But I’ve done my best to tone it down for the paper’s version tomorrow.”

“Well, thanks for that,” said Neef.

“I really am sorry.”

“Perhaps I took one hell of a leap onto the moral high-ground if truth be told,” said Neef.

“You were entitled to. There’s one thing I must ask you?”

“What?”

“What will happen to Neil?... you will note I said, Neil, not little Neil or baby Neil.” Eve added disarmingly.

“Neil has a malignant melanoma. There’s nothing we can do for him except deal with the pain and keep him as comfortable as possible.”

Eve paused as if she had found the finality of Neef’s reply difficult to cope with. “There’s nothing you can do?” she asked.

“I’m afraid not.”

“It must be absolute hell for his mother,” said Eve when she had recovered her composure.

“Neil’s mother abandoned him,” said Neef. “He cramped her style.”

“How do you do it?” Eve asked in a quiet whisper. “How can you go on working with kids who are dying, day in day out when there’s nothing you can do for them.”

“There’s actually quite a lot we can do for them,” said Neef.

“But it’s cancer you’re dealing with,” said Eve. “You’ve got chemotherapy and radiotherapy and not much else. Some even say the treatment’s as bad as the disease.”

“There’s also surgery and exchange transfusion and various other techniques.”

“But you must lose a lot,” said Eve.

Neef conceded the point. “Yes, we do.”

“I’m sorry,” said Eve, “I just don’t understand how you and the nurses can bear it.”

“Sometimes we can’t,” said Neef, “We owe it to each other not to show it.”

“We don’t cry out loud.”

“Pardon?”

“It’s a song... Elkie Brooks.”

Neef said, “Look, we’re not saints. We are just well-trained people doing the best we can with the resources we have. I don’t like people glamorizing the staff any more than I do the patients.”

“But it’s not something everyone could do,” said Eve.

“When staff tell me that they can’t bear it, that they want to transfer, I point out to them that the kids they leave behind are still going to die. Wouldn’t it be better if they stuck around and did their best for them? Medicine isn’t just about dealing with curable conditions; it’s also about doing our best for the patients who can’t be cured. If the best we can do for them means keeping them pain free and comfortable up until the end, so be it. We owe them that. But things are getting better all the time.”

Eve took a moment to digest what Neef had said then she asked, “Are things really getting better all the time?”

“Maybe not as fast as we’d like but yes, and Gene Therapy is about to come into its own in the next few years. In fact, there’s talk of us doing a clinical trial in the very near future.”

“But cancer isn’t a genetic problem,” said Eve.

“No, but it doesn’t have to be for Gene Therapy,” said Neef. “The strategy will be to introduce genetic change in the tumour cells which will make them vulnerable to other killing agents.”

“I see,” said Eve. “And you say you are going to be trying this out?”

“It’s possible but nothing’s been decided yet. There’s still some negotiating to be done.”

“But supposing you do get the go-ahead...” said Eve, “Is it possible that Neil might be given this new treatment?”

“Whoa,” said Neef. “We’re a long way from deciding things like that.”

“I’m sorry,” said Eve. “That was unfair and I’ve been taking up too much of your time.”

“Not at all, it was nice of you to call and say what you did.”

“Dr Neef?”

Neef noticed the nervousness that had suddenly appeared in Eve’s voice. “Yes.”

“Do you think I could come and visit Neil?”

Neef was taken aback. “I really don’t think that’s a good idea,” he said. “Forming an attachment to a child in Neil’s position is asking for a whole lot of heartbreak.”

“I’m aware of that,” said Eve. “I’ve just had a short lecture in how to handle it. It’s just that I think he liked me and if I can play with him and make him smile a little then I will have done my best too?”

“I’m really not sure...”

“I wouldn’t have asked if he’d had a mother or anyone else interested in him.”

“I’ll think about it. Give me a call in a couple of days,” said Neef.

“I will,” said Eve.