Sepsis Diary

So this is how it begins. New document, blank page, get to work. Proceed without expectations. Memory is a slippery thing. Stories are stories... as Italo Calvino said 'how to establish the exact moment in which a story begins? Everything has already begun before. The first line of the first page refers to something that has already happened'.

Anyone who ends up in ICU with tubes bristling from their arms, their legs, helpless as a felled porcupine, their urine extracted through a catheter and ditto their faeces, will feel full of panic, helpless and without agency, plagued by frightening dreams when reality is more frightening. Horror in abundance. The empty, the dark, the feeling of abandonment. Seized by terror, at the most primitive edge of experience. Every feeling of the void emptying into an infinite abyss. I wrote to my former analyst, now a firm friend 'I love you, I am terrified'. There's the impulse to pull out the tubes... is this a wish to kill oneself off or live a tube free 'normal' life again? Delete, oh please delete. Something must have gone badly wrong for me, I must have missed some connection or gone up the wrong path to end up here... Can't turn back the clock to go somewhere quite different ..what about all the lives I could have led... there must have been a door I missed which would have landed me somewhere a lot more manageable than this wall of darkness...The organisation's powerful, I think in my paranoid state. Nowhere to run, nowhere to hide. What I'd like is some small opening in space/ time so I can escape. A rent in the fabric? Not a chance it seems.

Nil by mouth... the name of a movie I once saw but in reality when it's thought that even a grape might upset your digestional balance (balance? What's that?) it becomes the backbeat to this scary new life... hardly aware of the watchful sorrowful worried presence of loving husband and later loving friends like dearest Anne who visited regularly even though her own husband was very sick, bringing me books which were wonderful but too much both for my eyes and my sagging flagging there any conceivable way of hanging on to one's former identity? Is refresh possible? My days are limp and frayed, beyond counting. I don't believe there is sun behind all these roiling boiling rolling clouds, cliffs of them blocking out any sight of calm sunlit sea.

And all this the outcome of a small fall in the road, a slight nick on the knee, helped up by kind strangers then (apparently) becoming more and more delirious and deranged, taken by kind ambulance men on a stretcher to the ambulance and then the hospital, the fog getting thicker and finally impenetrable, in the intensive care unit the quiet caring staff seeming like threatening aliens. Necrotizing fasciitis. gallops in on a black horse. Giddyup! All previous assumptions are trampled by this dark presence.


Silence is sinister and produces more sinister dreams. Even the house of good friends turns into another sinister hospital in these dreams, ruled by people who I thought would rescue me. The second night after admission, when I had registered through the fog that my right arm was turning black, hmm I thought, in a detached sort of way, yes my arm's black now...the first of three surgeries in three weeks took place, full general anaesthetic each time. Not at all good for elderly people. 75!! Where did it all go? As Sam Beckett said I just didn't see it coming. My husband was warned that dementia might ensue. When I was wheeled unresisting for the third surgery, it was the anaesthetic I was most afraid of: I was put in a side room to come round slowly, so afraid of what? The return.

For this first operation they gouged out the black when the surgeon deemed it was necessary to act fast. 'We can't wait till the morning'. At this stage people can in dire circumstances lose limbs. That was my husbands unvoiced fear. It was only later he told me about a guy who had a small nick in his gum at the dentist and woke up after surgery with no arms, no legs. 'I saved your life ' said the surgeon after that first operation, rather ignoring the efforts of the rest of his team who stood submissively beside him. My rings had of course been removed and my grandmothers opal ring had been wrenched off and broken in the haste to operate. No rings no keys no face cream no identity...who am I now? Forget narcissism, forget ego, this is new uncharted land.

'I saved your life.' that's what the surgeon said. Either I said out loud or at any rate thought inside my mind 'I wish you hadn't. ' Gratitude was not one of the cards I'd been dealt at that point. Hell no, forget it. My loyal husband visited daily, and my god daughter often came too with her husband and little boy Finn. She was pregnant for the second time and Finn was trying to grab her breast though her blouse. She brought me a framed picture of me with her in Italy, both In shades, me wearing a sunhat and one of my favourite white tops. It was a truly wonderful gesture but I doubted if I would ever be that woman again. That was a thought that forked through the fog and saddened me. The words you are reading here dissolved into the fog. I'd nearly given up. Hold on a minute, focus. In your dreams, baby.

I stayed in ICU for three weeks, vital functions all at risk. A kind nurse whose name is lost to me now washed my hair with dry shampoo and a towel, and cleaning teeth became a rare event. I mistily became aware that I could be recording all this but the capacity eluded me. Words were in danger of failure. The centre had fallen apart completely. Of course I also had lost my writing hand, now strapped up to a bar ,hung in a sheet so that healing could begin as it remained upright. This writing hand could no longer put any words to my existence: existing was enough in itself and took all my available energy. Writing then would have perhaps opened up the void still more. Sleeping eluded me too some nights , and I learned the name of the two pills they gave me. Zopiclon was one? Names gone now but it amused my nurses.

When I couldn't sleep I raved and swore out loud to break the threatening silence... one of the male nurses said 'I like your potty mouth'. Well he didn't at all of course. Later another trainee nurse started me writing with my left hand but it wasn't a success, considerate though she was in writing out pages for me to copy, practising this new skill. There was a whole new vocabulary and symbolic language to learn too. Which nurses were fully fledged with one colour apron, and which colours were used to denote the various trainee grades under them in the complex hierarchy of this hospital, along with the names for the different pieces of equipment they used, which you had to relearn under new names in new hospitals so one apprentice told me. I asked each nurses' name, and used them, which made them and me feel like real beings not just ciphers with different coloured aprons or a patient's nightgown, open at the back. Everywhere I looked there seemed to be a new nurse. If only the fog had lifted I could have recorded the changing names of things too in daily use : one I do remember is the Incosheet but I don't think it had much connection with incontinence. Whatever the apron colour, these nurses were with very few exceptions like ministering angels... for a time. Then in my mind and perhaps in reality they became hard and impervious to my most probably improbable demands.

Previously I had considered that all nurses did was smooth your sheet and murmur 'there there.' How different from my rather ignorant if not outright contemptuous fantasies were these women ( and a few men) who hauled one about, constantly under pressure to move on to the next task... underpaid of course and overworked, not even given a paid lunch hour...this I learned later when I transferred from the ICU to the main hospital, still in my own room since I was considered an infectious risk. Nurses tend to rank low in society 's eyes, not valued, when they deserve our highest gratitude and respect, recognised belatedly during the COVID 19 epidemic, but still paid appallingly.

The mattresses were a nightmare in themselves; ridged with air cylinders to keep the patient -oh this is me -from getting clots forming or bedsores, but hellish to lie on, to sleep on, to relax into, legs and feet confined with elastic stockings, right arm kept upright in a sling, who designed these beds? Surely no one who imagined lying on one. But who knows, I didn't imagine it either. Seemed to me I'd had more than enough with a brain tumour and a mastectomy, things come in threes said cheerful visiting friends, healthy or as I learned from my husband to say, 'pre ill'. 'And six more lives to. come'. My acupuncturist, also an old friend, came weekly to massage my increasingly aching back. The hospital was hot and my dear husband bought a new fan for me which passed the current health and safety guidelines. Things maybe were cooler....but. I seemed to have lost everything I had formerly known...when and if I came back nothing would be the same as before , nor would I be the same I. There was a swift transfer, much of which I don't recall, to a room in the main hospital. I left behind the personalities I'd grown accustomed to even if I sometimes disliked them and when I sorrowfully observed this to the new personnel they must have relayed it to the ICU staff, some of whom came to visit and to apologise for the hasty exit, including the poor woman who had been so bombarded by my despair that she fainted against a table, then apologising, denying it was my doing but I knew it was.

I felt suicidal, the suicide squad aka the mental health team visited and eventually sent some pills which didn't seem to help much if at all. I remembered the psychiatrist who had visited me when I was in despair after the brain tumour. 'Frankly ' he said 'I'd be a lot more concerned if you weren't depressed '. But for me a bit of dissociation, cutting off from the lack of agency as well as the adjustment to 'the new now' would have been a holiday for my bruised and battered sense of self. While at least in my mind that psychiatrist had had an honest appreciation of my then state, this young 'mental health' team seemed deeply inadequate to the task. I was old, remember, therefore losing the plot in their eyes...after my swift transfer to a room in the hospital more visitors were allowed, and they brought flowers and good cheer. My dear friend and colleague Jenny came with a bunch of flowers from her garden... do people still have gardens? Her husband was ill in another part of the hospital. The glass building opposite gave me full sight of more supine patients being trundled down for surgery. Each time I saw this I felt the same vertigo of dissolution.

One of my dearest friends Stella , mother of my god daughter, visited all the way from Lincoln shire for a day, bearing a beautiful flower with a root. Ok we'll go easy on the symbolism there. I had to leave it when I left.
She read to me, she held my hand...all seemed peaceful as when she had visited me at home after the brain tumour, gently reading Turgenev short stories.

But the water started gurgling up instead of down the pipes in the bathroom. We watched in horror. The water threatened to engulf my room so we were hastily evacuated to another room further up a floor, where the now almost non resistant patient had to make new relationships with new carers. I lost Dennis, a south London man who said that my urine bag was the most clear he had ever seen. (My dear husband brought me food as most of what was on offer was inedible at least for me. I had even as a vegetarian chosen the meat options which seemed more palatable. When I was being fed by one of the Afro Caribbean nurses I asked her would she eat this food.' I like my vegetables green' she said as she looked at the broccoli, bleached white through over cooking and staying in a plastic tray for hours..) Dennis who had worked at the hospital for many years as a nurse was going to give up frontline work and take a clerical position. He was in despair. He told me about one male patient who had punched an enquiring. l nurse in the face and broken his jaw and how he, Dennis, had been attacked with a bread knife by an out of control patient whose whole family seemed out of control too. The police took over, both the patient and his family were ejected, but the traumatic memory remained. Time had its own strange changeable dimension going on being perhaps was enough though I struggled to join the known world again.

I made friends with a blonde nurse from one of the Scandinavian countries who was ( or so she said) a doctor in her own country learning the ropes here. She said I was the only person who noticed she had cut her hair. It looked lovely. She transferred to A and E the very same day as there was a flood in my new room...oh yes again...and after some agonising time I was transferred for my last night to a bed by a window in the main ward...still with a curtain to shield others from possible infection. When I asked for the window to be opened I was told they were all broken. It was noisier here but it was my last night, disturbed frequently as doctors visited invisible to me ill people around me. Hospital time was ticking away for me. Time had been a tricky notion for me here...sure , as people say , before measurement of time we had lived more natural lives but now these measurements are hardwired in our brains and hearts. We know it and yet we don't know it till we're tipped into this chaotic timeless vortex.

In the ICU the clock had been on my right side. I tried to keep account of what was going on, but I confused days and nights and lost a whole day... where did it go? you never get it back... does it matter? Then in the regular hospital after the ICU I had a clock in front of me but it had stopped, lurching to one side on the opposite wall. Symbolic maybe but profoundly scary for someone trying her best to reinstate herself in consensus time... I had a smaller clock but I dropped it and it broke. My husband bought me a larger bedside clock, more hardy, which had a light you could press so you could see the time at night. I use it still. Eventually a working hospital clock appeared and I had ways of measuring my life in seconds, in minutes in hours ...and I thought of condemned victims in the Tower of London marking their remaining days with scratchings on the wall...while the daily injections continued,(my flat stomach was much admired).. the antibiotics dripped into first my arms then in my neck with a little tube which went to my heart...I was so scared of this procedure as people had said darkly oh that's hard...I lay on a stretcher outside the room where the procedure would take place...more waiting, time unloosed and gone away.. once inside I told them how scared I was and in the event it did not seem that bad even though the tubes, topped up twice daily, made a sore patch on my left arm but...this was much less painful than two nurses determinedly undoing the other plasters neck...not sure now what it was about but it hurt. A lot. Yes I think I cried out in pain. As I did when I knew I was peeing in the 'nappy' when I was still catheterised...both the two attending nurses and my husband tried to convince me that it was not so but I was in such pain...I seemed to cry out maybe for hours and finally a nurse named Nellie came... 'if it was you crying I knew there would be a real need' she said. And indeed there was. She unhooked me from the blocked catheter and more than a litre of urine poured out. The relief was indescribable. 'The catheter should have been cleaned ' she said, ok no blame, now I could pee on my own...a small victory in retrospect...having nappies changed had also been something to accept.

Nothing private, everything including ones faeces open to view 'enough here for two football teams' said one nurse. After the second surgery, when skin was taken from my left leg to patch up my right arm, I was now further incapacitated. The dressings nurse was very good but put honey on the left leg, 'graze'. It hurt so much again I cried out, it seemed for hours, till she came back and removed the honey. This left leg took a longer time to heal than had been anticipated. My right knee had been drained to remove the suppurating matter inside it, and it was so painful I couldn't walk at all. Doctors came and went, shook their heads, an x ray was scheduled but never happened. I was terrified all over again that it might result in more surgery, thinking of the guy who lost his limbs. Gradually things did improve. The physio team were terrific... always on time, always encouraging, even though when they began my back would no longer support me and I slumped sideways each time they tried to hold me up. While I doubted whether I would ever sit straight again let alone walk their gentle and heartening encouragement kept me from complete slump down. The team leader wrote my aims on the wall: to be at home with my husband, to watch BBC 4, and to go for coffee at my local coffeeshop. (COVID 19 then intervened and the coffee shop closed) Damian, Rose's husband, added, 'breathe'. Gradually they helped me sit up, through their own firm belief that I would do it, and then to transfer slowly and painfully from the bed to a contraption which could wheel me to the loo... to a chair but oh that was exhausting, I could bear very little of it, would ask to be wheeled back to the bed... there were issues with bed pans and commodes...would I ever return to normal? I doubted it. The third surgeon, a nice Scottish man, started the conversation about transfer to a rehabilitation centre. He made it sound cosy but I knew it was because they needed the bed. After blood tests and negotiations I was transferred to a rehabilitation centre still unable to walk. And as I went off in a wheelchair Nellie and some other nurses on the station waved me goodbye and wished me luck. At the rehab centre I was warmly welcomed by the woman who was chief physio and became important in my progressively somewhat more ambulant life. Her name was Jess. See, these names came back more easily as the fog lifted: Jess had an assistant called Beck, who tutored me in making cups of tea , shaky as I was ,and was instrumental in putting aids in our house to. I help me get back home after the allotted month in the centre which was then changed to three weeks for those who came later. But back to my first night. I ramble and so do we all, but we're better at covering it up.


After I had persuaded the night nurse to turn my bed sideways so I could see half a tree out of the window instead of the fierce array of equipment outside the door, designed to get us up and running or at least up and stumbling, I could appreciate the bed with smaller ridges, more pillows and painkillers on demand. There was a timetable here but only the physio people seemed to keep to it. No matter, it still felt more contained. Slowly I graduated from a Sara steady to go to the loo with no walking required, to something which required more of me...slowly, slowly I would become more of an active player in my own life. Food was still an issue: the dietician appeared to know nothing about gluten free requirements unless I had a piece l of paper to prove it .She wanted to increase my BMI and tried to get me to drink the protein shakes filled with sugar I had politely refused at the hospital. No one seemed to know which dishes contained what. My request for an unvarying evening meal of a baked potato and salad worked for a while till they forgot the potato. hero husband brought me food and I didn't starve. He also played scrabble with me when I had the energy to sit in a chair: then I fell going to the loo on my own so as not to disturb the nurses or our game , and the team quickly assembled to pull me up with a contraption only used when patients fell to the floor. News spread round the centre and many staff came to admonish me 'don't do that again'... Falls were recorded on a board in the corridor for all to see. Who won the Scrabble game? asked one of the male nurses. I still had plenty of visitors. My son, my only child, visited three times in the three months but that's another story. I was always delighted and proud to see him, as he described vividly how his two little boys reacted to the world. The inmates were an interesting mix: there was the Oxford graduate now in his 80s who had fallen awkwardly and now struggled with a metal shoulder .He was deaf and somewhat arrogant, and refused to turn his television down. There was a talkative woman who lived on her own her husband had died a few years previously, who would fix you with a seemingly unstoppable flow of complaints. But maybe it was unsurprising that she was bitter, since her fall had happened while visiting someone else in hospital. There was a man with a flying mane of hair who grudgingly told me his surname as if he was still at boarding school, called the food inedible and spat it out. He said he wanted only to be back home. He had fallen in the street and been taken to hospital against his will or so he said.


I still had to attend hospital visits and was taken lying in an ambulance, then wheeled by my husband to the specialist. Lying down in the ambulance and looking out the window at all the hutches we live in.... our city hives and our city lives. The hand specialist was especially encouraging as I was able each time to close my fingers more easily. They all thought I was doing ok. Waiting afterwards for an ambulance to drive us back was unfailingly a pain as I toppled sideways in a chair...waiting, waiting, it even has a special smell wherever you are, just sniff it, a special touch, eking out your time into a ball of nothingness. Wonderful drugs there were to forever free of pain. One, oxycodone I think it was, was a controlled drug, and each night in the presence of a nurse and her supervisor I had to give my name and date of birth. Once in exasperation I said my name was Tallulah Bankhead. It did not go down well. But I woke up each morning refreshed and pain free. I breakfasted with a few others (scrambled eggs and cornflakes) and there was a quite beautiful black woman who served us...if the dice had been thrown differently she would have been a movie star. Time was starting up again...even though there was pain when my left leg was dressed and nightly injections were still part of the routine. Jess like the physio team in the hospital wrote encouraging messages on the wall. 'Well done Judith! Today's achievements 1: became independent with frame 2 climbed stairs with no help only supervision 3 walked with walking stick and Jess 4 cycled 1.65 miles in 5 minutes' This sounds heartening but it was all so hard as the videos she took of me show. One day when I 'failed' the walking task I collapsed and cried real tears in her arms. I knew I was crying for much more. Learning from the steep slope. I felt like a sad sack , aeons away from the person I once was, even though I now wore real clothes and undressed at night like ordinary people at least in our culture do. My husband took me round the garden in a wheelchair and I winced at every slight bump. Jess showed us that I could indeed get into the lower slung seat of our car, even though my right leg still hurt to bend. And as Virgil said about the funeral games ' the awaited day arrived '...last trip in the ambulance to home. Armed it seemed against future shock with a mountain of pills. I went specially to say goodbye to the talkative widow, having breakfasted alone. Home would indeed bring more challenges but that, as they say, is another story. You have to know when to.l stop, as I said to a little girl in my reception class whose bright and beautiful painting rather like a Van Gogh threatened to be engulfed by black as she sloshed on the paint. I took the painting away. Was that ok? Not sure but I did it anyway. So I'm stopping now. Home again, home again, jiggety-jig, after three months.


I heaved myself up the two front steps of our house with the rail. l that had been attached to the wall and began again...back to the future. Refresh, reset, and keep buggering on as Winston Churchill is supposed to have said. Memory has spoken, done its best. Let it all go. It's over. This is it. Get over it. Or perhaps as Italo Calvino said ' the real story is the one that begins ten or a hundred pages further on , and everything that precedes it is only a prologue'...

[Grateful thanks to Drs Diane Zervas Hirst, Michael Craig and Christoph Hering, to the surgeons and staff at the hospital, to my dear friends, to my family, and most of all my dear husband Andrew Baldwin, who has for over 35 years seen me through]