Hi everyone. It's been a while but here's my newest story. I've been working on this for quite some time but it's been a slow process (real life/writers block) so I'm only as far as chapter three. I'm hoping I'll speed up writing once this is published so I'll aim for semi-regular updates.
I've done plenty of research for this but some of it is beyond my understanding, so apologies if I get some of the details wrong. I once heard that all you need to do is write convincingly, but I'm sure anyone with medical knowledge will be able to spot any mistakes. I promise I'll always research but can't promise I'll always get it right.
I really hope you enjoy the opening to this and would love to read any feedback.
x
1.
Cal shuffles on his plastic chair. He strains his neck to pointedly check the clock on the wall behind him. He waits for the minute hand to shudder into its new position and then tuts as loudly as he can manage.
"Right, that's it," he says. He doesn't bother to disguise the scowl on his face as he turns back to face his brother. "Ten minutes late. Complete farce. I'm going to have a word with reception, see what's behind this hold up."
Before he can stand, Ethan's hand comes firmly onto his wrist.
"You are absolutely not," he says.
"You'd think there'd be some benefits for being one of their own."
"But, Caleb," Ethan says. "I'm not here as a doctor, I'm here as a patient, same as everyone else."
Ethan releases his grip but Cal no longer feels the need to jump to his feet and commandeer an unsuspecting receptionist. "You still work in the same building," he mutters.
Ethan turns to face him, his brows furrowed so deeply that they're well hidden behind the thick rims of his glasses. "If you'd rather not be here then don't feel obliged."
"I'm staying, Ethan, all right."
Cal folds his arms and slumps against the hard back of the chair. He knows he resembles a sulky child but couldn't care less. He doesn't want to be here, his brother got that much right.
Truthfully, Cal wouldn't have thought twice about the letter had it not been for the speed Ethan jumped up from the table and shoved it in the back pocket of his corduroy trousers.
Their post rarely involved anything other than bills but Cal was sure that this wasn't one. For a start, his brother never had any problem with showing him a bill, usually by waving it in front of his face and demanding, in a high pitched voice, to know why they were still getting reminders.
"Love letter?" Cal had asked.
Ethan blushed at the mention alone. "It's none of your business."
"So who's the unlucky lady then?"
"No-one."
"Come on, let's have a look. Let's face it, you're going to need help comprising the response."
Cal took a step closer to his brother and snorted in amusement as Ethan jumped backwards and clamped his hands on the trouser pocket where the letter lay.
"Caleb, stop it," Ethan berated. "It's not a love letter. It's private."
"Yeah, but I'm your brother."
He shook his head as if he'd never heard of the concept. "What's that got to do with anything?"
"Private doesn't apply!"
"It most definitely does."
"So what do you call walking in on me the other day?"
Ethan shuddered. "Foolish naivety that you'd be considerate enough to move somewhere more appropriate than the lounge."
"Lack of boundaries, Nibbles. We're brothers! So stop being boring and share the gossip."
"There is no gossip, Caleb. Some of us actually take life seriously."
Cal faltered. He'd never truly believed it was a love letter Ethan was hiding but the opportunity to tease him was too great a one to miss. Yet now, a niggling concern made the smile fall from his lips. "Erm, everything is okay," he said hesitantly, "isn't it?"
"Of course it isn't," Ethan had replied. "You're making me late for work."
"Ethan Hardy?" a voice calls
Cal snaps out of his daydream and jumps to his feet ahead of his brother. He turns and sees Ethan still sitting, polishing his glasses on the edge of a faded handkerchief. Once, he might have mocked his brother for smartening himself up in preparation to meet the doctor, but today he sees hesitation and takes his chance.
"It's not too late to change your mind, you know," he says softly.
"What?" It's almost a bark. "No," Ethan says, "no. I want to do this. I'm certain."
"Are you?"
Ethan almost pokes himself in the eye with the ferocity he replaces his glasses. "It's my life, Caleb!"
The treatment room is smaller than Cal had expected; a bed in the centre and just one chair, evidently for the doctor. He makes a point of sitting on the bed, making it known that the lack of furniture can't force him away. His eyes flicker to the only adornment on the walls, four certificates, perfectly aligned, expressing commendations for the doctor's work within medical research.
The doctor must be pushing sixty, with thinning grey hair and glasses so thick they put Ethan's to shame. "I'm Doctor Nowak," he says. He looks between them. "Which one of you is Ethan?"
"I am."
"I'm his brother," Cal says. "Older brother."
The doctor tilts his head, a spark of interest pulsing through him. "Brother, hmm?"
"I don't have the gene," Cal says bluntly. "Sorry to disappoint you."
"Cal!" Ethan fixes him with a familiar warning glare. That look has never done much to quash Cal, but especially not now, not today. "I'm sorry," Ethan says to the doctor. "This has been a difficult decision for us to make."
Cal stifles the urge to scoff at Ethan's use of 'us'. It had been as far from a joint decision as he could imagine. He knew he had no right to even try, but since his brother had finally admitted his intentions, he'd done all he could to try to talk him out of it.
The doctor shrugs away his rudeness but Cal's not fooled. The apparent generosity in ignoring his comment was for no-one's benefit but Ethan's. Of course the doctor wants his patient on side. The more drugs he can pump into Ethan's body that way.
"I appreciate you being here," the doctor says with a stock smile.
"The more test subjects the better, right?" Cal snaps.
The doctor's placidity doesn't falter. "I can't dispute that. Academically speaking, we need enough willing participants to make this trial valid. But it's not just about numbers and it's certainly not just about treating the gene. It's about the people behind the gene. The people we could be helping today and in years to come." He straightens his back. "I'm sure I don't need to describe the difference this could make in people's lives if we successfully developed a cure for Huntington's?"
Cal feels heat rush to his head at the doctor's patronising words. Of course he knows the benefits from eradicating Huntington's. It ruined his mum's life and is set to destroy his brother's. But as a doctor, he's had years of experience of understanding that some diseases don't have a cure. He knows that when the time comes for Ethan he will require drugs to ease the depression and sedate the tremors in his limbs but that could be ten or fifteen years away. This doctor is determined to turn his brother into a patient years before he has to be one, and Ethan has clung on to the tiny bit of hope he has left.
"But you don't know that you're curing Huntington's, do you?" Cal says. "You don't even know which potential side effects the drug may cause."
"I'm afraid will this kind of research there are no guarantees."
"So it's not implausible that you could make him ill before his condition does?"
"It's highly unlikely. Prior tests have shown nothing but favourable results."
Cal scoffs. "On mice."
He sees the doctor flinch and can tell it hurts him to hear someone suggest he only researched on mice. He expects the doctor to explain about the other successes he's had, about the monkeys he's worked on, the whole range of rodents. He wants the doctor to elaborate, just so he can point out the differences between his brother and random animal test subjects.
But the doctor just nods. "We only progress onto humans when we're positive the risk is as minimal as it can be."
Ethan clears his throat. "We've talked about this, Cal. It's a risk I'm willing to take."
"You can't go back, Ethan. If things go wrong, then you're stuck with the consequences."
"I'm already stuck with a degenerative disease." His lip quivers. "It can't get much worse."
Cal opens his mouth to accuse the doctor of prying on vulnerable people with nothing to lose but the expression on his little brother's face makes him hesitate. Ethan looks like he's about to have his last bit of hope stripped away from him and Cal can't be the one responsible for that. He folds his arms across his chest. "Fine. Do what you want," he says. "It is me you're trying to imitate, after all."
Ethan doesn't smile but he squeezes Cal's knee before turning back to the doctor. "Sorry, please continue."
"Okay." The doctor thrusts his hands together with a clap. "Well. The object of this meeting is to go over the final details before your first injection tomorrow but please use it as an opportunity to ask any questions you may have." He leaves the slightest of pauses before continuing. "The injections will be administered intrathecally – that means into the spinal canal."
"We know what it means," Cal interjects. "We're both doctors."
"Doctors?" He repeats.
Cal nods smugly. He can't help but feel that he's got one up on the Doctor Nowak, whose high pitched tone and slight grimace suggest he'd much rather have novices in front of him.
"My apologies," he continues. "I didn't know." He shuffles in his chair so that he's solely facing Ethan rather than the small gap between the brothers. "As with all intrathecal injections possible side effects include slight soreness, headaches, drowsiness, nausea and stiffness of muscles, although there is no guarantee you'll experience any. I also have to mention the more severe risks such as nerve damage or relinquished bowel control, but I'm sure you know that these are incredibly rare." He waits until Ethan acknowledges the statement with a slight bow of his head. "The injections are to be administered on a four weekly basis over the course of thirteen weeks. During this period and the fifty days following, you will be required to attend various appointments for monitoring purposes. I have the schedule here." He retrieves a document from the top of his folder and hands it to Ethan. "These include general fitness and cognitive function examinations as well as blood tests and ECGs."
Cal leans towards his brother so that he can read the piece of paper he was given. It's a long list of dates, all followed by a few words confirming which procedure occurs on that day and sounds far more invasive than Cal had imagined.
"The injection will contain one of five things. The first of these is a placebo drug; the other four are varying dosages of IONIS HTTRx, the drug that we hope will one day cure Huntington's. The treatment plan you will be on has been selected randomly and neither you nor I will know which until after your trial has concluded."
"Right," Ethan says, shakily.
"Is there anything you wish to ask?"
"Um, I don't think so."
"Actually, yes," Cal says. "Let me get this straight. One of the doses is a placebo. So you could put him through all of those injections and tests and he may not even have the possibility of being cured?"
"I'm afraid so," the doctor says. "I can understand your concerns and frankly I'd much rather all my patients had a chance of success but the trial would not be allowed to proceed without a placebo group."
"Ethan, seriously?"
"I thought you knew?"
Cal runs a hand over the back of his head. "Oh, it just gets better!"
"Um," Ethan says. "Wouldn't you would rather I were in the placebo group?"
"What?"
"Well, you have been particularly against this."
"Not against the cure! Look, Ethan, this guy can't even give you the odds of success and you're willing to put yourself through months of treatment that could go badly wrong."
"I don't expect you to understand."
Cal frowns at him but Ethan is refusing to meet his eyes. "This isn't you," Cal offers, as his last attempt to change his brother's mind. "You're the sensible one. You don't take risks."
"It was time to change," Ethan says. "It would be nice if you would do the same and actually support me for once."
Cal swallows a lump of guilt. He knows he's been a useless brother on numerous occasions but this isn't one of them. For once, he's not contradicting his brother to be difficult or to wind him up but out of concern. He wishes Ethan wouldn't invalidate his points just because of their turbulent past.
He's still searching for words when the noise of Doctor Nowak's chair scraping along the floor makes him wince.
"So," the doctor says with an air of triumph. "Tomorrow's the day! Are we still on?"
Cal holds his breath and yearns for his brother to say no.
"Absolutely," Ethan replies.