Brain surgery - African dreams

by Hilary Sunman and Josie Prynn

This essay presents Hilary’s subjective experience of recovery from brain surgery following a  subdural haematoma,  interwoven with Josie’s professional and personal interpretation

For most of July and August my body was fixed firmly to a bed at the National Hospital for Neurology and Neurosurgery at Queen Square in London, pinned down by tubes and fragility.  But as I sank into unconsciousness and brain surgery my mind travelled  the world, and I found myself in Africa, in a hospital in Kigale, Rwanda. A tall dark concrete building, each ward contained about twenty beds, concrete slabs like coffins, but surprisingly comfortable, as they were all  covered by brilliant lengths of African fabric, Kitenge cloth and batiks, vivid and rich. I particularly remember a dark red one on which I settled down  to sleep.

But it was hot in the hospital, there was a strong acrid smell, and my head was uncomfortable. I felt as if  wounds on my head had been stitched together with hard leaves. So it was with relief  that I found myself outside, at the edge of Lake Victoria, so clear, so blue,  and so refreshing. I stood in the shallows to cool down, the sweet smooth pebbles beneath my feet. And then, knowing I was due to go back to a more modern hospital next door the following day, I spent the night in a tall apartment block between the two buildings, on a high floor. The apartment faced east,  with enormous windows illuminating views across Lake Victoria to the Masai Mara in Kenya and beyond, past Nairobi to the Langata hills. The light was white and iridescent, the hills etched brilliantly. I could even see the house where Isaak Denison, writer of ’Out of Africa’, lived and loved, so I took a taxi to visit and sit by the fire where she would sip whiskey late into the night with lover Denys Hatton -  a fire for it gets cold in Nairobi at night.

I  can’t remember how I left her house but soon I was on my way, bed-bound, to England, spending the night en route in a French hospital probably in Boulogne.  I was puzzled that no one spoke French but was confident I was in France because of the style with which the doctors and nurses wore their scrubs. Plus, there were croissants for breakfast.  I was soon moved to a hospital in London similar to the French one with, curiously, the same staff. I wondered whether there was some new sharing arrangement since Brexit, but I never found  out. 

Gradually the freedom of travel faded out and I was in the midst of an extended and complicated nightmare full of anxiety and people and places I knew. The exhilaration of travel and freedom was now lost in a stifling world of fear.  Nothing worked properly, I felt an anxious need for things to work out but they didn’t. I was in an inverted wonderland of illogic, was wandering in a dream sequence and nothing made sense, anxiety was tangible. 

Then, after a long time, I heard a voice talking to me,  talking about me: ‘Mama your eyes are opening,  Mama are you awake? can you hear me? can you see me’? And my beloved daughter Josie was with me, bearing me out of the nightmare and back to reality. She and Peter, my husband and her father Peter had been sitting by my bed for my eight days of coma,  talking to me every day, and finally they brought me back to life, in London. I was still weak, still pinned to the bed,  but back nevertheless.

* * *

Why Africa is not clear but I think it’s because Africa has always been part of my life. I was born there,  I’ve worked there and lived there,  and Josie is going to be living in Africa soon. My experiences, dreamed or hallucinated,  were so vivid and Africa stayed with me in curious ways once I was coming back to reality. Two of the nurses on my ward that looked after me were from Africa; one  from Nigeria, the other Ghana.  They called me Mama and  I loved that and I called them Mama too. They surrounded me in a great African warmth. One day when my stepsons came in to visit me, bringing their own sons as well, there were four men over 6 feet tall around my bed and one of the nurses said to me ‘Mama these are your soldiers, you are a big woman Mama’. So this was Africa too. 

What had happened

Peter and I had spent a couple of very busy weeks in our house in France, preparing for the summer letting season. Always fraught as one tries to create a perfect place for the guests, but this year particularly so as our handyman had fallen from a ladder and broken his wrist, and our gardener had fallen down the stairs and broken some ribs. We were waiting for the installation of high speed broadband and as a phone rang I ran to pick it up – but tripped in my loose fitting sandals on the lintel of the door from the terrace into the kitchen. Running,  I fell at speed, hurtled backwards onto the stone floor, landing on my lower back and head. There was nothing to break my fall, the crash was powerful and painful, and I let out a howl of pain and fear.

We had to leave the day after next, the Friday, as our first guests were arriving on the Saturday and the house day needed to be prepared, the garden tidied. Apart from the shock and pain in my back all seemed okay, So, despite the pain, we carried on as planned, meeting friends for dinner for our last night, le gindreau with its Michelin star, and carried on packing up. Looking back it is curious; I had persistent headaches, but fuelled with paracetamol our drive through France was fast and smooth, first to Chenonceaux for a night in a pretty Logis and then on to Amiens where we found a delightful modern Michelin recommended restaurant. Rest and paracetamol seemed to be all I needed. 

Back in England we went for supper with Josie and her husband Andy, both doctors, and then straight up to our Suffolk cottage where I wanted to pick up my tools – chisels, planes – because the following weekend I was booked on a tool sharpening and fettling course in Sussex, where I previously had done courses on furniture restoration. I took advantage of our two in-house doctors to talk about the fall. Curiously, presciently perhaps, over dinner we talked about resuscitation, strokes and quality of life; I stressed that I did not want to be kept alive if there was no quality of life, I wanted nothing of tubes or catheters or drips.  But with no thought as to how this might be relevant to my aching head.  It was a happy evening and, still daylight, we left to speed north to Suffolk for a night. The drive seemed light and magical; magical even when the M11 turned out to be closed north of the Stanstead turn. So we turned right, got out our paper map and found ourselves swooping through delicate Suffolk villages, the falling darkness offering protection as you could see the headlights of oncoming cars. Suffolk smelled sweet, the cottage welcoming, and we sat in the garden sipping whiskey before an untroubled night’s sleep. I remember feeling a curious sense of happiness.

But within 24 hours everything had turned into nightmare. We returned to London, and I went to a print making session at the Mary Ward Centre in Queen Square on the Wednesday evening. All  seemed well, I was putting colour onto a print for a public exhibition of students’ work in September, when I became aware of a strange sense of pins and needles in my left arm. By the time I reached home this had morphed into a series of bizarre movements, a seizure of my left arm which was now moving violently and uncontrollably.  A phone call to Josie, and we were on the Circle line to A and E at University College Hospital. Josie came and joined us in the crowded, sweaty waiting room. My left arm had to be held still by my right. (A woman of about my age sat near us reading Hamnet by Maggie O’Farrell. I remember noting to Josie that one could start a short story with the words ‘she was the sort of woman who could read Hamnet in a crowded A and E waiting room’.) Four hours later I was assessed by a doctor and then things moved rapidly. A CT scan identified a significant subdural haematoma – a bleed around the brain. Now, a week after my fall, I lost consciousness, and was moved in a blue light ambulance back to Queen Square, where a few hours earlier I had been immersed in print making, but this time to the National Hospital for Neurology and Neurosurgery. There they waited until a theatre became free, and now, a week after my fall, my  journey to Rwanda  began.

21st July 2022

Dear all, 

This is a bulletin to share updates on my mum, Hilary Sunman, who as most of you are aware has not been at all well over the past week. 

Last week on Wednesday 13th July Mum went to UCLH A&E with weakness in her left arm that had developed a week after falling over and hitting her head in France. A CT scan confirmed that she had a subdural haematoma (bleed around the brain) which had started as a result of the fall and had likely been increasing in size slowly since then. Over the course of Thursday 14th July, she became increasingly drowsy and was taken for emergency neurosurgery on Thursday evening. The surgery was more complicated than the surgeons had initially anticipated as there were multiple bleeding points, but after several hours they did manage to stop the bleeding. 

Since then, Mum has been in the Surgical Intensive Care Unit at the National Hospital of Neurology and Neurosurgery (Queen Square), and her post-operative recovery has been somewhat complicated: 

1. She developed a bad chest infection leading to high temperatures and very high infection markers. However, over the past couple of days her infection markers and fevers have been improving which is very encouraging. 

2. As a complication of the bleed, she has developed a number of infarcts (strokes) within the right frontal cortex of the brain. We won’t know exactly how this will affect her when she has fully recovered from the infection and the operation, but it appears that she is unable to move her left arm and leg at the moment. 

Over the past few days the team have been very gently weaning her sedation and we have been anxiously watching to see how well she wakes up. Today was the first day we’ve seen her with no sedation at all. She was moving her right arm and leg and mostly responding to instructions “e.g. squeeze my hand” and according to the nursing staff she has opened her eyes and made eye contact with them, although she was unable to do that when we visited. 

The next big step will be to remove her breathing tube, which the medical team hope to be able to do in the next day or two. We are hopeful that her conscious level will continue to improve as she fights off the infection and continues to recover from the operation, but only time will tell what lasting disability she may have. 

We will update you all regularly, please let me know of anybody else not already on this mailing list who would like to receive updates. 

Love, Josie 

23rd July 2022

I’m very happy to share that the last 48 hours have brought significant progress in Mum’s recovery. Yesterday morning the doctors were able to remove Mum’s breathing tube, and she has woken up for the first time since before the operation. She is opening her eyes and she is talking. Her speech is currently quite slurred and difficult to understand, but she seems orientated and remembers up to around 24 hours before she went to A&E. She even asked for a glass of wine today, so she must be feeling more like herself! She is now also moving her left leg, which we have not seen before. Today she was stepped down from Intensive Care to the High Dependency Unit, and hopefully this evening will move to a regular ward.

There is still a long way to go – she is still on oxygen, is not yet able to eat or drink (she has a tube from the nose into the stomach through which she receives nutrition) and is still too weak to get out of bed. There will be a long road of rehabilitation ahead but considering where we were a couple of days ago, this represents a huge step forwards.  

My journey back 

I was sedated for a period of 8 days but it took me about a month to get any idea of the time passing. I had no idea I’d lost over a week. I  woke up fairly lively – when asked by a nurse if I would like  a drink, I said a glass of Merlot would be nice. The request met with such a degree of mirth that I repeated it far too many times to all and sundry. Indeed, I was quite deranged for some time. I could not understand that I had missed my tool honing course in Sussex. I worried about the picnic I was to take to a country house musical evening we were going to with friends, a tradition of many years, not understanding that the date had long passed. I had vivid, lively fantasies about events that could not happen. On the last Friday of the month we had been due to go to Newmarket to watch the race horses training on the Gallops, a broad sweeping hill just to the south of Newmarket.  I made detailed plans about how I could walk on the hill with a Zimmer frame (at the time, I was still needing a hoist to transfer out of bed), how Josie would come shopping with me in Newmarket to buy a suitable dress for the races, and how we would take my granddaughter Julia to see the horse as well. I did not understand dates and the loss of time – this confusion lasted for several weeks, and I missed various things – theatre visits for example, well into  August without understanding they had come and gone.

But what I did understand was the overwhelming love and support we received from friends far and wide. There were so many cards and loving messages that I joked, in pretty bad taste, that I felt as if I was at my own wake. For at that stage, I really had no idea how close I had come to death, how I had been touched by the wing of the dark angel. When I had woken to Josie’s soothing words, she and Peter did not know whether I would be paralysed, able to speak, or even recognise them. But to their relief, when Peter said ‘Hallo Hil, Josie and I are here to talk to you’ – as he had said every day of my coma – I responded, slightly testily ‘Well I can see that!’.  So I was back, but it took several weeks before I resembled my old self. I was very weak and fearful, my left side inert, but so supported by friends and family. So many people visited that I was buoyed by the love I received and even while still on a food drip and catheter I could begin to take up the reins of ordinary life. Or at least, that is what I thought I was doing. I made plans for the future but could not put my night dress on by myself. I found a library of books but couldn’t hold more than a page or two in my mind at all and with the feebleness of my left side – which was paralysed when I came to – I could barely turn the page. 

Friends were amazing; Lizzie brought pureed fruit; Paul did wonders for my reputation,  when I was barely out of Intensive Care, by bringing me a picture of a pretty Italian motor bike and announcing to all that I had a full bike licence. Other friends brought me luscious creams and moisturisers and perfumes. Then there were my Soldiers. 

29th July 2022

Ongoing progress from the tour de force that is Hilary Sunman! 

Since my last update, Mum has moved within the National Hospital for Neurology and Neurosurgery (NHNN) to the Victor Horsley Ward. She is continuing to make good progress in all elements of her recovery. She is still very weak after her operation and ITU stay, but has been managing to sit out in a chair with the physiotherapists for an hour or two per day. She is getting increasing movement back in her left side, including her arm which she was initially unable to move at all. Her speech is getting clearer by the day as well. She is still receiving her nutrition through a tube to her stomach, but her swallow is getting stronger and the team are hoping she might be able to start eating and drinking within the next week or so. Understandably after having been so unwell she is getting disorientated from time to time. Dreams and reality are getting a bit mixed particularly when she’s tired, but underneath it all it is very clearly her – she is making jokes, asking after loved ones, and holding a conversation, which is wonderful to see. 

8th August 2022

Mum’s progress continues to “stagger” her team (direct quote from the occupational therapist), and today she was moved from the National Hospital for Neurology and Neurosurgery (NHNN) to a rehabilitation ward at St Pancras Hospital. She is now eating and drinking normal foods so her feeding tube is out. She is walking short distances independently, and quite far with assistance from one person. Her disorientation is much reduced too, although she said to me today that she is still getting muddled about what time of day it is. 

The focus now is on intensive physiotherapy and getting back as much strength and independence as possible, and in characteristic style, Mum is enthusiastic and looking forward to getting stuck in. 

Thank you to everyone who has visited over the past couple of weeks - Mum has so appreciated the visits and wanted me to put that in the bulletin specifically. Unfortunately, the visiting at St Pancras Hospital is a lot more restrictive – only one visitor per day for a total of 30 minutes – so I will close the booking calendar, but hopefully at this stage it won’t be too long before she’s resuming a more normal social calendar. 

* * *

After five weeks at Queen Square, I was moved to the St Pancras Rehabilitation Unit, housed in a former workhouse near King’s Cross. and adjacent to the tiny and ancient St Pancras church. The unit specialises in rehabilitation after strokes and similar traumas; Michael Rosen, writer and illustrator was there for a while after he had been in an induced coma with Covid and wrote a delightful book about his friend Sticky Mc Stickstick who helped him to recover strength, mobility and some freedom. I too adopted Sticky Mc Stickstick, a cane friend who enabled me to totter unaided to the loo and along the corridors of the hospital. I will never forget the joy on my daughter’s face when I went unaided, except for Sticky,  into the day room when she came to visit. This was some five weeks after the original trauma. In those days at St Pancras, England was paralysed in a heatwave; while at Queen Square  Peter had been able to borrow a wheelchair and take me out into Queen Square itself, and friends could come and sit with us. But at St Pancras there was only a carpark, not much of a place to sit. Our redemption came from a dry cleaner/coffee shop across the road, run by a charming Turkish guy, Haz, where we bought the most delicious iced lattes; these became the theme of visits, the hospitality we could offer to friends and family. Peter and Haz became chums – Hello Haz – Hello Peter. Only fly in that ointment was that Haz was Spurs supporter…

On August 19th, six weeks after my original fall, I was discharged and sent home. Without the safe arms of the hospital around me I felt timorous, ill prepared for the world outside, terrified I would fall again. The world was a place of trip hazards and pills, but that first night Peter invited friends round for a drink – at last I got my glass of Merlot. It was a truly warm welcome home, and my journey back began.  But we had been in a grim place, Peter and I; his journey no easier than mine and we were both exhausted. 

* * *

24th November 2022

I have now been home for 14 weeks; just over three months. I have made progress, abandoned Sticky Mc Stickstick weeks ago, can usually dress myself and get everything on the right way round, and last week took up swimming again. But my short-term memory is rubbish, I need to write everything down.  Skills I used to take for granted I have to work at. I’ve forgotten how to crochet, editing this paper has taken me far longer than it would have done before. 

An old friend suffered a very severe stroke several years ago, he was in a much worse place than me; no sight, unable to walk or speak. He came to see me at Queen Square and it was so good to talk to someone who had had a similar experience. Getting in touch again later, he emphasised the long time it takes to recover. After three months he said he thought he could give an after-dinner talk. He found he couldn’t. A further three months he was scarcely any better. Other people’s experiences spur me on. I heard on the radio the other day that Joan Baez had had a brain aneurysm – and had to relearn to play the guitar from scratch, so surely I can learn to crochet, tie a bow and all the other things where my brain and left hand  continue to let me down. I am now getting good support from community physiotherapy and occupational therapy, although several weeks passed after my discharge from St Pancras before this fell into place. This afternoon I have my first follow up consultation with the Neurosurgeon from Queen Square. What will his verdict be?  Most importantly, will I be permitted to drive again? 

December 14th 2022