Forbidden fruits

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This was just..so awkward..and just so sad..

As clinical people we are not supposed to get ‘involved’ with our patients. I knew this from day one and have never even considered it an issue.

But in my very early days I had occasion to deal with this first hand on a daily basis. Looking back I think I just blocked it out. I was too busy and not really wanting to get emotionally into the middle of it. The other people around me seemed so..err. grown up, so mature and old in their outlook. In contrast I felt very young and naive, though gradually got to know that many felt the same- they just hid their feelings very well.

I was a very junior, just qualified doctor on a leukaemia unit. This was a strange world to inhabit. Lots of young people mainly, all at various stages of their illness. They would come and go for their chemo. Sometimes they would die spectacularly, other times they would simply disappear having probably died elsewhere. We never got to know for sure. Not many seemed to survive but nobody talked much about death. It was too depressing- most of these people were the same age as the doctors and nurses who delivered most of their care, day in day out. We were all too absorbed in trying to save just a few and make life bearable for those for whom all hope was lost.

I was just a grunt, taking orders from those higher up the food chain, ordering labs, doing the daily blood run, collating results, flushing lines and mixing chemo or nutrition (which these days medics don’t get anywhere near-all done in dedicated aseptic units- well away from grubby hands).

There was a particularly physical aspect of this environment which has stayed with me over the years. Among all the bustle, chaos, emotion and stress, there was an overpowering stench. I spent time trying to figure out what it was and a few of my more senior colleagues were able to shed some light. It was the subtle blend of steadily rotting human flesh combined with the preservatives they used to stop bone marrow dying before we were able to infuse it into people in the hopes that it took root and saved them. This smell seeped out of their pores, into their clothing and was permanently in the air conditioning. It invaded our nostrils and eventually we too stank like our patients. There was nothing quite like it and if nothing else once you were thus contaminated, you were truly part of the club.

At the time the unit was trialling bone marrow transplantation as a potential cure for some aggressive types of leukaemia. This, it occurred to me, was the most horrific way imaginable of torturing a desperate person- and their families- for what in many cases turned out to be the last weeks or months of their life.

The basic procedure was that we blasted these people with chemo which was designed to anihilate the cancer without anihilating them. This required some very careful and agile balancing acts with drugs and blood products. In destroying their bad blood, we also destroyed what was left of the good stuff, plus their skin, hair, gut lining and anything else that renewed itself continually to keep them alive and looking human. Each time they recovered we would give them a break for a few days, send them home then book them back in for another round once they had recovered enough to get going again. This would go on for many cycles. Sometimes they would simply give up and quit or come in unexpectedly dying or bleeding because we had overdone it, or we had underestimated their ability to withstand the stuff we were throwing at them.

The transplant cases had already survived this ordeal several times over before we pitched them into the next phase of the programme. They were truly ‘special’, something we were reminded of daily by our bosses. This was experimental treatment and no one wanted to be the one who fucked up in a way which might then transpire to be the thing that made the transplant fail. There was no way back from that and not only would the patient die horribly, but the programme would notch up another failure meaning that the tally of surviors didn’t look good enough for us to claim ultimately that the programme was succeeding.

Preparation for transplant involved something that seemed truly horrific and I wondered in retrospect why any sane person would allow us to do this to them. This was the medical torture that is total body irradiation. This involved exposing the whole body to a near lethal dose of radiation, the kind of thing you would get from fall out after a nuclear bomb exploded in your city and if you survived the intial blast. Its as near to intentionally almost killing someone in the name of medical treatment as I ever got in my entire career. The effects, though not immediate, left people close to dead and our job was then to stop this happening long enough for the bone marrow we infused into them to take hold and pull them back from the brink.

Desperation drives patients to exhibit many strange choices and behaviours, plus we were not always able to fully explain what might really happen because it was all presented in terms of risk. ‘This or that might happen’ but ‘we’ll do all we can to prevent bad stuff happening’ and ‘all being well you’ll walk out of here alive, well and possibly cured’. Was the usual narrative. For some that sucessful outcome did come to pass and it was the survivors that kept us all going. For the rest, uncertainty and fear occupied them uncomfortably and we would try to remain positive, even light hearted to keep spirits up for everyone including ourselves. It was tough.

Mostly they kept going, spurred on by the constant threat of death, perhaps enhanced by the ever-present worried family members who hovered nearby, biting nails and fretting about everything that might indicate either improvement or deterioration. We got to know the ‘survivors’ quite well. Their partners, occasionally little kids that they had managed to conceive in better times before they got sick, would all gradually drift into our consciences. No one wanted to get too close in case we got asked awkward questions or we developed emotional attachments that would hurt us and quite possibly cloud our judgement.

With some trepidation we would occasionally accept gifts from them or even exchange pleasantaries -knowing that around some, as yet unseen corner would leap chaos in the shape of catastrophic infection, uncontrollable bleeding, delirium or intense pain about which we could do very little. We never wanted to feel like we had betrayed the trust people might be placing in us by admitting that disaster always lurked mere moments away from us all in the immediate future.

My first experience of a bagle was from a guy who’s wife we looked after. I was surprised one day when he bought these in to the unit where his wife was just getting over her final round of chemo and due to go home the next day. He brought his two little kids in to celebrate the anticipated event. This character actually hated me. He had on several occasions berated me for not doing things exactly right when handling his wife’s indwelling Hickmann line. The Hickmann was a semi-permanent plastic catheter, tunelled under the skin and sitting in a big vein near the heart. The bit poking out from her chest was the only real way we had of giving treatmnent, chemo, blood, drugs, and taking off blood to test. It was literally a life line and dominated the daily routine of anyone unfortunate enough to need such a device.

So when he presented me with a bagel I wondered actually if he had somehow poisoned it, or at least spat on it, to get his own back on me for the seeming ham-fisted and incompetent way I had treated his wife in the early days. However I quickly realised this was a genuine gesture of good will.

“You’re a quick learner” he smiled, “better than most of them, but still not perfect. Thanks.” He thrust the bagel at me and I looked into his glassy eyes, realising that he actually meant the compliment and wasn’t simply being nice or pitying me.

“Thanks..err what is it?”

“Its a bagel, cream cheese, salmon” he looked sadly back at me, ” celebration, gift from us to you, its our way of saying thanks.”

“Right..err thanks..I’ll err..just go and..err” I extracted myself, flushing and backing away from him embarrassed by the possibility that I might some how be entering into an emotional contract with this guy and his family that I neither wanted nor understood. He probably thought I was rude but genuinely I was touched, if not a little humiliated by my own ineptitude.

I heard later that this patient had gone home but had quickly relapsed and developed a life threatening infection. They had opted to go into a private unit in the hopsital from which the state funded medics were banished. I have no idea what happened but tried not to take it too personally that somehow they had figured that paying for her care gave her a better chance. They were just desperate to keep her in their lives I guess.

The consultants who drove this programme were pioneers, but also zealots, committed to trying to find a cure. I don’t think they lacked compassion, but they seemed able to tune out of the frankly horrible reality of what they were doing to people in the name of pushing the boundaries of medical knowledge. At times this just felt like intentional cruelty, but mostly I knew at the heart of it they did care.

I recently saw one of them wandering about the hospital I presently work in. As we passed in the corridor, 30 years on from when our lives briefly coincided and he ruled me, I glanced over to see if he would recognise me. He didn’t-why would he? We had both aged and I look very different now from the fresh faced idiot I presented back in the ’80s.

What struck me about this guy was that, although he looked older, his physical presence was more or less the same: he moved quickly with a sense of purpose and urgency. But as we passed and he glanced at me I saw the blackness in his eyes. Haunted, I thought. I have no idea what he was thinking but all I could think was ‘here is a guy who has dedicated his life to medicine, to the pursuit of saving life and cure-and he must be carrying an overwhelming burden of personal cost which he holds inside and would never disclose’. Is it worth it? Without guys like this we would never move forwards, but ultimately even strong zealots meet their destiny head on. We all have our nemesis.

Not long before I finished this job I became aware of something going on around me that was unusual. That I even became aware was probably testament to the fact that I had become deeply integrated into the unit, its processes and customs, and now had sufficient skills and capabilities to be trusted to do my job without being constantly hectored by anxious senior colleagues.

Kate was a senior nurse on the unit. She was thin, willowy, dark hair, red lipstick, immaculate. An air of sophistication surrounded her and blended perfectly with the expensive perfume she doused herself with the hide the stench of transplants. I admired her from afar but she truly terrified and intimidated me. I always felt stupid in her presence and she often berated me for not knowing things that she sarcastically alleged ‘someone with your supposed intelligence should really know by now’.

Everything went well when Kate was on shift. Nothing was out of order. She was organised, brutally efficient and businesslike. The junior staff, of whom I was one, felt safe, and so too by association did the patients. Everyone respected her, especially the bosses who unusually would consult her about things that normally nurses would not be asked about. Details of treatment that had blindsided us but of which Kate had full and detailed command. She knew everything from the latest lab results to detailed information about family dynamics. Her knowledge was encyclopaedic and we grunts were in awe.

So it was with total disbelief that I came to know something about Kate that did not fit with her carefully manicured and forceful professional presence. But once aware I saw it daily for the remaining few weeks of attachment, leaving me unnerved and not a little anxious.

One thing that everyone who as ever worked in health care knows to be true is that solacious gossip flies around hopsitals constantly. I’m less aware of it now and I think things have probably changed, not necessarily for the better. Or maybe I’m just out of the loop mostly now. There are more staff, more patients, there’s more to do, and people are just so much more busy. Maybe there’s no time to gossip any longer. I don’t know, but in the ’80s at least it kept us all entertained and sane. Much of this stuff was either untrue or overblown. But dig down and there was usually some shred of truth beneath some of it at least, meaning that we all loved to share and add our own detail, provenanced or not.

In a local bar one night , a little worse for wear following a heavy on-call shift, too much alcohol and no food, a colleague drifted over and pointed towards a dark corner a few yards away.

” See that?” my colleague motioned, looking conspiritorially at me. I looked over, straining to see through the gloom.

“Oh my god..its Kate..what’s she doing here?” This was indeed unusual. The bar was not at all sophisticated (suited me perfectly) and frankly its only attractions were that we could stumble back to the hopsital drunk without getting lost and the booze was cheap. Definitely not the kind of place you would go to impress a date.

“Look! ” my colleague hissed, jerking their eyes hard right “Who she’s with?”.

Up to this point I had never thought of Kate as someone who was human, fallible like us, and who might socialise, much less have emotional relationships with anyone. But there she was and as I tried not to gawp I realised that the guy she was sitting with, hand on his knee gently stroking as they talked intently looking into each other’s eyes, was one of my patients. One of her patients.

“Jeez..what’s going on there then?” I said naively.

” They’re fucking each other..” my colleague got straight to the point. “Been going on a while.”

“But..” I trailed off.

“Yes she’s been looking after him, and I mean, err ‘looking after him‘ ..” Learing unpleasantly towards me, “behind everyone’s backs.” Wink.

” But he’s married, got little kids..his wife comes to the ward..Kate is her..”

“Best friend?”

“Yeah..seemed that way to me anyway..”

“Well she probably is, but meantime the leukaemia put a strain their marriage I guess, and Kate stepped in to help out. She always knows what to do. And this time she probably fell for him. I mean, he’s not a bad looking guy is he? Why wouldn’t you?” More learing and winking.

I tried to process all of this. While being his nurse and making sure that his treatment was delivered by the grunts safely, while advising the bosses, while looking after everyone else, and while maintaining that air of serenity, Kate was also fucking her own patient. Was this even legal? It was certainly not in the unwritten rule book I had had drummed into me during training. But then thinking back this explained some of the lingering attention to extra detail which ocurred around this guy when we went to see him with the bosses during his rounds of chemo. Kate may have been infatuated, but she kept it well hidden.

Of course once you know something like this you cannot remove it from your mind. Fortunately my time on the unit was nearing the last few weeks and I tried to put what I had been told out of mind. I tried not to gawp at Kate but try as I might I noticed her subtle, but additional, attentiveness towards this guy when he was on the unit. I wondered how she did this, her lover, also her patient? How she managed the conversations with him and his family without being awkward. Without revealing herself. She appeared warm and close to his wife and his kids. Innocent and caring on the surface, but now I wondered was she using this access to manipulate things for her own gain. Or was she in fact helping them all in various ways deal with something so terrible that an affair was justified, in her mind at least. It all seemed so fucked up and wrong to me.

And then the inevitable happened.

Two nights before I was due to finish on the unit I was trawling the hospital doing the usual tedious rounds when I got urgently summoned to the leukaemia unit. Earlier in the day Kate’s guy had brought himself in feeling ‘a bit off’. He was kept for observation and given pain relief for a headache. He was by this stage in remission and we were all hopeful that he would be one of the lucky ones. His bone marrow was still fragile after a transplant but he seedmed to be on the up. His regular check in visits to the unit had started to become less frequent and the only thing that was worrying the bosses was his blood clotting which had not returned to normal for reasons they were struggling to explain.

When I had checked him in earlier in the day he seemed fine and there was not much to say or do except watch and wait for labs to come back. When I had left him in the middle of the day he was sprawled out on the bed, dressed in his usual designer denims, shirt unbuttoned with Hickmann visible beneath a transparent sterile dressing, Walkman blasting Springsteen into his ears and reading a book propped up on his knees. The very image of a Hollywood hearthrob playing a patient in recovery, ready to break hearts with his tales of near death experience.

As I scurried into the unit I was quickly aware that something bad was going on. There were nurses rushing in and out of the room I had stolled out of just a couple of hours before. I could sense their mounting panic. Nothing could really prepare me for what I saw as I rounded the corner and entered the room.

Kate’s guy was crouched on the floor, naked, holding his knees up to his chest, rocking but arms and legs jerking. Head down with gurgling noises emitting from his upper airways. A nurse was crouched down beside him trying to pry his hands from around his knees. They were both covered in blood. His blood. It was everywhere, pooling on the marbled floor so that anyone walking in was at risk of skidding over and injuring themselves. The room stank of shit and urine. He had emptied his bowels and bladder into the large pool of blood.

“What the fuck?” I couldn’t help blurting out.

“He pulled his Hickmann out..” a nurse beside me motioned towards the long blood streaked tube which was now fully outside of his body and fully wound around his neck. “I think he was trying to hang himself with it. Dunno. All happened really quickly”. He trailed off and looked at me.

“Right.” I said feeling the need to get control of this situation quickly and trying not to slip over in the mess on the floor. I grabbed gloves and a plastic apron and pulling them on lept into the fray. “We need to get him off this floor and onto the bed..get some sheets on the floor to cover up this fucking mess, or else someone will get hurt..”

Several of us dived in and man-handled him up, pushing back at his resisting body, forcing him onto the bed, getting covered in blood, urine and shit as we went. We forced his limbs straight, feeling his strength fighting us back, but also seeing that this could not go on as blood steadily oozed out of the hole in his chest where his Hickmann had come out. I unwound the offending tube from around his neck and jerked his head back, trying to clear an airway to allow him to breath. As I did so he began bellowing at us, blood erupting from his mouth, teeth gritting and eyes bulging but unseeing.

Somehow I managed to get a cannula into a flailing arm and quickly administered a small dose of midazolam-a powerful and quick acting sedative. Within a minute or so he began to calm down and we started to get control of the situation. An airway was inserted and I asked for the crash team to be summoned so that we could get him properly sedated and try to start treating him.

It was some hours later that he was finally moved to intensive care. The bosses had come in, stony faced, firing questions at us, making us feel uncomfortable but eventually backing off when they realised we had done our best to deal with the situation. Several of us were left talking in hushed tones, traumatised and not sure what to do. I was still on duty with a long night ahead, covered in body fluids and needed to shower before getting on with the pile of jobs that had built up.

The next day I crawled onto the unit to begin the day, with barely 30 minutes of sleep and not relishing the prospect of having to do a full day’s work. The unit was quiet. People were going about their usual routines but the events of the preceding night had clearly been relayed in graphic detail. I kept my head down and hoped the day would pass quickly.

Later that evening I trudged down the hospital corridor on my way home reflecting on the day. News of Kate’s guy had filtered out of the intensive care unit thoughout the day and we gradually began to understand what had happened. It turned out that ‘feeling a bit off’ was the beginnings of a life threatening infection, not evident on admission but subsequently showing up in the battery of bloods I had earlier dispatched to the lab as part of the routine check in for a transplanted leukaemia patient. To add insult to injury this had triggered a massive brain haemorrhage. People surmised that in his rapidly following delirium and responding to the pain in his head he had grabbed at his Hickmann and inadvertently yanked it out and around his neck.

Those that knew about his relationship with Kate speculated that he had somehow decided to kill himself and this started a vicious and completely untrue series of rumours that burned out in the next few days as his condition deteriorated and his wife and kids camped out by his death bed in the ICU.

The day Kate’s guy died, with his distraught family by his side I ran into Kate on the leukameia unit. She had been supporting his wife and kids through this epsiode and I wondered how she was able to do this while carrying on with her day job. The few who knew of her relationship kept clear of her as best they could. The many that did not know of it just blundered on, sharing their own personal grief at the horrendous events that preceded his death. Kate seemed to take this in her stride and I admired her fortitude.

“Don’t” she put her hand up to me as I approached. I looked at her, questioning. ” I know you know about me and ..” her voice trailed off, “and I know you kept quiet so thank you, and sorry for putting you in a difficult siutation..”. I shrugged and began to speak, but not sure what to say, so stopped.

“Sometimes you just have to do things that make life better for everyone..maybe I made a few stupid choices but I don’t regret what I did. I loved him and I will do my penance no doubt.” She looked at me, eyes un-emotional and then walked off, barking orders at her staff as she went.

It was some years later that I once more ran into Kate at a medical conference where we were both speaking. I didn’t recognise her to begin with. She looked older, tired, gaunt even, but still immaculate and aromatic. She and I no longer smelled of transplant. We exchanged a few pleasantries but I quickly sensed she wanted to move on. We parted with nothing said about the past. I never got to know, as she floated off through the crowd, if she felt the trauma of her loss, and I could not bring myself to ask. Clearly no one else there knew of her past and I was not about to revisit it.