I tweeted something about mental health, medication, and the burden of self-care. It seems worthwhile capturing my thought on here.
Two and a half years ago, my partner Peer was admitted to Charing Cross Hospital for emergency brain surgery to remove a cyst that was obstructing the fluid flow in his brain. This surgery almost certainly saved his life. Today we returned to the hospital to get the results of his 2-year scans, and the professor of neurosurgery told him that they would no longer need to monitor his progress.
Fourteen months ago we left Peer being wheeled on a hospital trolley into surgery. Now it’s time for me to dredge the sequel up from my memory.
When Peer had been taken away I had a little cry, and my mother had a little cry, and we the brushed ourselves down and agreed that, of all our options, staying in the hospital during Peer’s surgery would be the least productive. The ward receptionist gave us a vague idea when Peer might be out of surgery, warned us that even then there would be a two-hour recovery period during which he would be essentially unconscious, and we settled on 2 am as a reasonable time of arrival back in the ward.
With a sense of timing unsurpassed by the meteorologies of any other nation, the heavy rainclouds that had been hanging over London for the previous forty days and forty nights had chosen the moment of Peer’s withdrawal into surgery to stage a retreat of their own, and the sun was now casting scalloped shafts over the damply verdant city. Some necessary phone calls made, my mother and I set off along the Thames to try to clear some of our own rainclouds. The evening air was cool and fresh, but my kept turning to the thought of Peer under the knife, and what might befall him in surgery.
There are times when rationality isn’t enough and the remote possibility of great distress weighs far heavier than the close promise of relief. The chances of Peer dying on the operating table, or being left with severe impairment were, I knew, slim, yet I could think of nothing else, and the knowledge that four months of suffering were at an end did nothing to counter this fear.
We ducked into the Dove for a swift, medicinal half, and then wandered back up to the Bush to dig ourselves in for the evening. Thai takeaway and half a DVD later, I decided to try to sleep. We decided that waiting till two and then phoning every hour for news would be folly: we should just get some rest and contact the ward early in the morning, by which point Peer should be out of surgery, and the news would be more conclusive.
Of course I didn’t sleep, and my fantasies became more morbid with each sleepless minute. How could I imagine life without Peer? I would be without the person who had spent the last five years with me, who had given me the support and love to slough off the depression and self-hatred of my younger years and become someone who might just be worth caring for. And now he was at his most vulnerable, his scalp flayed, his skull trepanned, his grey matter cleft to let the NHS’s finest butchers dig around in the seat of his very being. And what would I do then? Would I return to my sad old ways, or would the grief make them worse? With my outrigger cast away, would I founder in my old despair?
Somehow I must have entered a restless doze, as my alarm wakened me at six. The cobwebs still about my eyes, I phoned the ward: Peer was out of surgery, had returned to the ward at one in the morning, was in intensive care and was awake and sitting up; we could pay him a first visit straight away.
I woke my mother, and we walked through the clear cool morning to the hospital. Peer was propped up in bed in intensive care, looking somewhat bruised, battered and bloody, but recognisably himself, and free of headaches. He was, of course, somewhat delirious from the anæsthetic, and some of his comments were perhaps a little puzzling, but he was alive, and that was the most important thing. I did my best to hug him through the drips and oxygen tubes, and then we had to leave him to rest, and go and spread the news to the families.
And so we found ourselves taking our second riverside walk in twelve hours, the evening’s apprehensions superseded by sheer joy. We watched cormorants fishing in the river, drank fizzy water at a riverside pub and felt the dark clouds blow go the way of their counterparts in yesterday’s sky. Later that day we would have to start thinking about Peer’s recovery, but at this moment we just wanted to enjoy the exhilaration of his survival.
Note: this post was previously published elsewhere, and has been copied to this site to keep it on line.
It’s been quite a month: I’ve been through more drama in these last four weeks than I can remember having to deal with for a very long time, and now seems an appropriate moment to recount what has happened and to explain my long absence.
To do the story justice we need to go back to late March this year, when Peer and I were preparing to go away to Amsterdam for a week. Just a few days before our departure I received a phone call from the account manager at our estate agents, giving me the less than welcome news that our landlord wanted to put our flat on the market and sell it from under us. Over the next few days Peer developed a splitting, migraine-like headache, which we initially blamed on the stress of for the second time finding ourselves let down by our landlord, and it was only through acts of will from both of us that we managed to get away for what turned out to be a rather low-key, although still enjoyable break.
On our return Peer visited went to our local GP and saw Dr S. about the headaches, which were continuing to affect him; I sat in the waiting room whilst he was in the consultation. When Peer emerged I could see from his face that Dr S. had done nothing to reassure him: rather than offer any sympathy or sage advice, he had told Peer that he was an anxious young man, that he was suffering from a tense nervous headache, and that he should take an aspirin and wait for the headaches to subside. I, of course, was livid that a supposed caring professional could be so cavalier in his dismissal of a distressed patient, but Peer talked me out of marching back into the surgery and demanding details of how to make a formal complaint.
We fast-forward two and half months to the end of June: another holiday looms, this time to Normandy, and the headaches have persisted. Indeed, not a week passes without Peer being laid low with crippling headaches, visual disturbances and spells of confusion and disorientation. In the run-up to the holiday Peer has been working on a piece of DVD authoring for a major client, and he has been under a great deal of pressure to get this finalised, and to prepare his colleagues for our week off. At times we have doubted whether it will be possible for us to go away, but, after a Herculean effort, Peer has trained at least one of his colleagues, and this colleague has expressed sufficient confidence that he can create this DVD to reassure Peer at least somewhat.
The day before we leave, we have a friend arrive to flat-sit for us while we are away, and we plan to take him to the pub for dinner. Peer feels another migraine coming on, so we loiter for a while at home in the hope that it will pass. In the end, we decide that hunger is the worse of two evils, and make our way down to our local for a helping of pub grub. As the food arrives, Peer announces that he’s feeling significantly worse, and needs to go outside for some fresh air. He comes back in to announce that he needs to go home and get some rest, and I persuade him to eat at least a bit of the food he’s bought before he heads off. Our friend and I finish our meals and follow him shortly afterwards. When I get home I find Peer sitting on the bed shaking like a wind-up toy; when I talk to him, I am dismayed to find that he has absolutely no recollection of anything that has happened in the past two or three days: indeed, his memory may be missing for longer, but I myself can’t latch onto anything before that, so we cannot usefully excavate further back. As he quizzes me about the foregoing hours and days, it becomes clear to me that not only is this amnesia affecting his ability to remember recent events, it is also stimying any efforts to lay down new memories: the sequences of questions Peer asks me are the same, almost to the word, and his reactions: verbal, emotional and physical, come to resemble the stereotypies of the mentally disturbed. Something is clearly very wrong with him, and only after several hours to I calm him, and myself, down enough for us to enter a fitful sleep.
The next morning at eight — the morning of the day we are due to go on holiday — I take Peer back to the GP, whose surgery he has been unwilling to reenter after Dr S.’s brush-off three months ago. This time we see Dr M., the practice lead, who I have seen before, and whom I trust. He suggests that the amnesia may have been caused by stress, and confirms our suspicion that headaches are migraine, and not simply tense and nervous, as we had been told before. He tells us not to abandon our holiday, but to return once we’re back in town, at which point he will decide what to do.
Oh, that the holiday had afforded us the relaxation we needed! As it was, our journey out was beset by problems: this was the day that a bomb went off near Picadilly Circus and another was found in a car in a carpark under Park Lane, so crossing London would not have been an easy matter at the best of times. In addition Peer and I were both exhausted and stressed after a very poor night’s sleep, and I was in my usual panic about trying to cross London on foot with a heavy suitcase and not quite enough time. An altercation with a grubby little litter-dropping rat of a girl at Hyde Park Corner didn’t exactly improve my mood, and it was a huge relief to reach Waterloo and find ourselves in time for the Eurostar. We had further fun and games at the Gare Saint-Lazare, as I apparently needed a PIN to retrieve the tickets I had bought on line (until I explained to the woman at the checkout that I had already paid for them, at which point she exclaimed
‘Oh! it seems to have worked’, and handed me my tickets, and where we got caught up in some strange piece of police cordonage, which was never explained, and never seemed to resolve itself.
Our week in Normandy was itself blissfully quiet, although my driving was, if never dangerous, sometime (particularly when parking) enough to get Peer rather hot under the collar. However, our journey back was even worse than the journey out.
When we had picked up the hire car in Lisieux, the woman at Europcar had told me that we had until 14:00 the following Saturday to return it. What she didn’t tell me was that the car-hire office is shut between 12:00 and 14:00, and that there is no facility for dropping off the car when the office is unstaffed. We arrived at 12:05 to find everything shut, and no notices to tell us what to do. Only by phoning the number on our documentation and waiting for the phone to ring through to answerphone was I able to find out the offices opening hours and to realise that we would miss our 13:47 train if we waited around. So, a trip down to the station and €40 later we had tickets on the next train out of town, and found ourselves back at the car-hire office waiting for it to open. All this time Peer was suffering from yet another migraine, and was now having trouble keeping his balance and walking in a straight line. We finally dropped off the car, and had about an hour and a half to kill in town; on our way down the hill from the car-hire place the wheels on our suitcase gave in, and we stopped at a luggage shop to buy another case — whose wheels also failed within half an hour. This meant I was dragging a dead weight of a suitcase around for the rest of the day, along with a head that felt on the brink of exploding, and a boyfriend on the point of collapse.
Once we’d made it onto the train to Paris, I started to relax, and though it wise to check our Eurostar tickets. It was at this point that I realised I had made a mistake about the time of our departure, and that rather than an hour and a quarter, we had less than a quarter of an hour to cross Paris in order to make check-in for our train home. As it was, our train into Paris was slightly delayed, and we had exactly one minute to get from the Gare Saint-Lazare to the Gare du Nord. We swallowed our fears and jumped in a cab, which got us there in impressive time, and we were lucky enough to get through check-in in time to jump on the train before it departed. The journey back is rather a blur, but we finally found ourselves at Waterloo (Peer threw up immediately he set foot on British soil), and, after confusion, despair, the concerned intervention of a couple of coppers and a garrulous cab-driver, we made it, exhausted home.
By some sleight of hand we will fast forward another three weeks: Dr M. has given Peer a referral to the migraine clinic at Charing Cross Hospital and sent Peer for various blood-tests, which have revealed nothing. Over this time Peer’s headaches have intensified, he has experienced further lack of coordination, and he has suffered further episodes of amnesia, though none as intense as the first. We have explored other avenues of treatment, having his eyes tested, visiting an osteopath and cutting out trigger foods, all to no end. Two days before our scheduled appointment I become worried enough about Peer’s health to put him in an ambulance and take him into A&E. The casualty doctor, a young African man, gives Peer a full examination, and tells us that Peer should have a CT scan, but that, as we have an appointment in two days’ time, we would be best to wait until that point. On the way home, Peer collapses on Fulham Palace Road, and it is only with difficulty that we get him as far as a cab stand.
And then the day of the migraine clinic arrives. Peer has slept fitfully, and I with him. He is reluctant to visit the hospital, nervous at the prospect of the CT scan, and generally apprehensive to be visiting a place of sickness. I do my best to reassure him that this is our best prospect of getting him better, and somehow manage to get him out of the house and walk with him to the hospital.
The consultan, Dr J., looks like a comic-book medical consultant: bow tie, scuffy suit with a moth-hole in one knee and pockets so capacious that it takes him two minutes to find his pen. He is also faultlessly affable, and, of course, holds the key to treating Peer’s problems. For the umpteenth time Peer has his reactions and reflexes tested, details his symptoms, and, with my prompting, recalls the history of these headaches. Dr J. confirms the diagnosis of migraine, writes us chits for more blood tests and a CT scan, and gives us a note to Dr M. to prescribe beta-blockers as a first line of attack against the headaches. He asks us to come back in three weeks’ time, and which point he will assess Peer’s progress.
We head round to the blood bay, where we take a v-shaped numbered ticket and wait our turn for phlebotomy. Also in the queue is a fat nun in a wheelchair, whose presence gives this episode a certain surrealistially cinematic air. The phlebotomist is a trainee, and is having problems controlling her chair: the armrest slips as she attemps to puncture Peer’s arm, and it takes her a couple more attempts to get samples. However, by this point Peer is already in a state of shock, and nothing can really faze him.
Blood drawn, we head over to radiology, where we are lucky to be passed straight through the computer tomography section. Dr J. has reassured Peer that a CT scan is nowhere near as scary as an MRI scan, and he goes into the chamber without objection. When he emerges, he needs a minute or two to sit down and collect his thoughts, and then we plan to head back home.
Before we left the CT clinic, Peer went into the loo, and I waited for him in the corridor. As I waited, the technician popped his head round the door, and asked us not to leave yet, as a doctor wanted to have a word with us. We were directed around the corner to a rather dark corridor, where we waited for something like half an hour, before a smart and efficient-looking doctor emerged. She told us that the scan had revealed a build-up of fluid in Peer’s brain, and that the cause of this was a cyst. We should wait where we were, and a neurosurgeon would come and talk to us.
The neurosurgeon was a beautiful and elegent woman with curly brown hair and an unidentifiable accent. Peer later described her both as looking rather like my mother and as looking like a spaniel: which comparisons do everyone involved something of a disservice. She took us back to see Dr J. in neurology, and gave me instructions not to let Peer eat or drink anything from that point onwards. This last instruction confirmed my suspicion that Peer was going to have surgery pretty soon, but i did my best to reassure him, as the even the thought of being led straight into surgery terrified him.
We saw Dr J. as soon as he was free, and he showed us the results of the CT scan, and explained their significance. A dense body — almost certainly a colloid cyst — had been found in Peer’s third ventricle, and had been causing a build-up of fluid in his ventricular system, in other words hydrocephalus or water on the brain. He showed us the lateral ventricles, which would usually appear little thicker than pencil lines on the scans, were distended by the excess of cerebrospinal fluid, and how the surface of the brain, which would normally be deeply ridged, was almost smooth, so much pressure was it under. He explained the rarity of this condition (3/1 000 000 I would later learn) and its risks: migraine-like syptoms, loss of coordination, amnesia, drop fits, and, eventually, sudden death; because of the severity of the risks Peer would be admitted to the neurosurgery ward that afternoon, and would be operated on as soon as a slot became available. Dr J. himself would take us up to 11 West, where Peer would be looked after.
At this point, Peer and I were both in shock: what we had expected to be a routine visit to the local hostpital was turning into an admission for brain surgery. I started to understand, in a way I had never had the chance to understand before, that shock is a very powerful and useful state: over the next hours and days, it allowed me to deal with the most horrific episode of my life without falling to pieces. For most of this time I was insulated against my emotions: my intellectual grasp of the situation was absolute, but, except for the occasional tearful moment, my emotional contact with these circumstances was non-existent: I simply ceased to feel anything. Who needs to call on a god for strength when our own evolutionary physiology can give us such superhuman power?
And so we found ourselves on the conveyor belt, preparing Peer for surgery. Over the coming hours Peer had further blood samples taken, was moved from the waiting room into a bed in a ward, exchanged his clothes for a hospital nightie and a pair of terribly fetching anti-thrombosis stockings with holes in the toes, was given the pre-op Scary Talk by the assistant surgeon (risks: death, brain damage of various sorts, bacterial or chemical meningitis or ventriculitis, &c.) and the not-so-scary talk by the anæsthetist (drip in the arm, drip in the neck, possible drains in the scalp, but yes, they would knock him out before plumbing him in), had a host of readings taken and was given a flotilla of forms to sign. Then, finally, he was ready for surgery.
Meanwhile I had spoken to Peer’s mother, who had received the news with shock, and to my work, who had been hugely supportive and told me not to think about work until it was all over. I had tried to raise my parents, but initially without luck: my mother was in a meeting somewhere, and my father, out in France, was not within earshot of the phone. Later I managed to speak to Peer’s boss, and finally to my father, who performed some conjuring and magicked my mother out of nowhere: she reached the ward an hour or so before Peer was due to go into surgery, and, along with my state of shock, provided a much-needed second line of defence against my emotional collapse, and was a wonder in helping Peer prepare himself for the operation.
Also hugely valuable were two nurses in the ward: Paul and Jo, whose humanity and encouragement were a phænomenal help. It takes a certain rare skill to care not only for the physical and medical needs of a patient in such a situation, but also to attend to their emotional needs, and Paul and Jo were exceptional in their ability to do this. We spoke to Jo several days later, and she told us that she usually words on a cancer ward: somewhere where her skills must be invaluable. Paul was in his last weeks as a student nurse and, it transpired, would be joining Jo once he had qualified. I would wish no one the circumstances to have to encounter either Jo or Paul, but it is great to know that two such talented people are working somewhere where their compassion and good sense are so clearly needed.
And so, finally, the moment that cannot fail to break your heart: the hour of surgery. A group of doctors arrived, and Peer was wheeled out of the ward to go under the knife. Nothing can conjure up the grief that strikes you to see someone you love so much in such a position of wretched, fragile dependency, and to know that you yourself can do nothing to help them. I took Peer’s hand, I kissed him, I told him I loved him over and over, and I wept. Then Amanda held me as I wept, and we watched him wheeled away.
Note: this post was previously published elsewhere, and has been copied to this site to keep it on line.