The very strange thing about being in hospital…

I’d gone through brain surgery and  when I came out of it I was in a lot of pain and discomfort. 

The pain meant I couldn’t  move very much in my bed.

All I could  do was look down towards my toes, and at the white wall in front of me. Because of that, I couldn’t  ‘know’ the room I was in.

I had a room to myself, I wasn’t on a ward and I could tell there was a big window on the left-hand side and a door on the right hand side – because that is where all the doctors and nurses  came in from. But I couldn’t look to see down that corridor. 

I trusted  it was a pretty regular room. But, because of the pain, I couldn’t move my neck to look around so I couldn’t see it, and I couldn’t work out where things were.

Every day the cleaning lady came in and swept down through the corridor and  into the ensuite. So that’s how  I learned what the ensuite was – and how big it was. Because I could hear her knocking around in there. 

She  would then come down into the main part of the room, and that’s how I figured out where the sink was. I kind of read the room from  what she was  doing, just from the noises she made. 

At first, I had to have  a morphine to deal with the room. I couldn’t experience the space because I couldn’t open my eyes.

The pain….. I have never experienced pain like that.  

For the first part when I wasn’t fully conscious, I was just kind of in a dream state.

I was ‘ lost’.

It  was a massive pool of pain that was endless and relentless and no-one  could  relieve it.

And I felt very vulnerable. 

There was a clock on the wall facing me but I couldn’t swivel  my eyes up to the clock – it would have been agony if I had done that.  The pain was  very much in the muscles that move your eyes. 

I used to have to step my eyeballs up the wall to the clock to have a look, just moving the muscles in my eye sockets a little bit at a time. Then I could hang on to the clock and look at it, and then come  down the wall again with my eyes. 

To reduce the pain they adjusted  things in  my brain a little bit and so I was able to move my head a little more and look around the room. 

It was quite a while before I realised that one side of the room was all glass. 

I couldn’t take the light – even though it was a north light, a very flat northern light.  I couldn’t take it, it hurt too much. It was a week before I had a look out the window. 

When the  physios started working on me they got me sat up and put me in a chair where I look directly out through the window. 

And that’s when I saw this amazing view: the entire part of north  London that I knew so well.

Some places were quite special to me – like Camden, where I used to live.

The view from my window was like some  sort of massive visual diary. 

My friends would visit and it was interesting having really current and vital  conversations about things that were just outside the window.

They would point places out to me and it was great being able to see places  that  I had visited and known.  I can remember finding a spot  on Primrose Hill, and the walk down from Primrose Hill.  

This view out the window  held a whole lot of memories and started me thinking  about all my past encounters with London.

With my mates we would go back over old times sharing stories about  different places.. where they had flats… and the different  jobs they had… and things like that. 

My room was actually directly  above the Wellcome Institute – which I am very fond of because it has a fantastic café.  But the funny things was, all the nurses  who  I would have chats with, didn’t know the  Wellcome Institute –  even though it’s about the history of  western medicine.

I used to talk to them a little bit about bits and pieces   out the window that I knew about. 

Looking down on Euston station brought back all these memories from the past fifty years of exploring London.

You could see  all the way down Euston Road to King’s Cross –  which was the first place I ever came to in London. I spent my time watching  the new railway being built next to  Euston station – the High Speed one that is going to go north.

I was in hospital for two and a half months.

My brain had been damaged a little bit in the operation. The meningitis had ferociously attacked my brain which meant I couldn’t read things…. and I had to learn to walk again.

Also, what I thought… wasn’t always true, so I  made  compensations and guesses.  

In the first few days, coming to  terms with the room, I started  noticing there was this noise  coming from the wall opposite me. Because it was the only thing I could see I was totally focused on the wall.  

The noise…it sounded a bit like plasterboard being scraped… so I thought it was was coming from the wall. The noises  were really expressive and animated and  totally unpredictable, but they were 24/7.

It was all through the night. 

There were long periods when there wasn’t anything. But  it started to get to me. I couldn’t deal  with it.

Some of the expressions were taunting: de did dede de…de de.  Human, expressive  animated noises.

I asked the nurses to go round to the next room and ask whoever it was to stop it or…to find out what’s going on?

I did this two or three times with the nurses. 

None of them came back  to report what was happening. Then a bit later one nurse said just let it go…don’t worry about it… forget about it. 

I noticed that none of the medical staff ever noticed these noises.

The thing is:  I was hearing it from the very start… and it bothered me.  But I did get calmer about it. I accepted these animated expressions and noises were coming from the wall. 

Then, about two weeks before I got out,  I realised  it wasn’t the wall. It was just a coincidence that the noise sounded a bit like a wall being scratched. It was actually the bed I was in! 

I was in an incredibly sophisticated  bed that moved  constantly 24/7. It had  the most extraordinary mattress that  flowed and massaged me continually to make sure I never got bed sores. Sometimes it  opened up in the middle and dropped down and then it would hold you. It was an amazing  sensation. A sophisticated thing –  and noisy. 

I had projected  the sound onto the wall – because that was what I was fixed and focused on.  It took ages to laugh that off. I had spent  so long thinking there  was a maniac behind that wall!

Before I went into hospital I had spent quite a lot of time in my bedroom at home being ill. 

My life had been very much in my bedroom. 

My bedroom is south-facing. In front of my window there is a carpark and when the sun comes out  the light hits the  windscreens and  shoots it up onto my ceiling. If somebody gets  into their car  and drives away I get this amazing installation  of light moving… light shapes… across my room. And it’s incredibly entertaining.  

I have a very old fashioned wardrobe with  cut-edge glass mirrors  that split the light and  send shards of rainbows all over my room.  

In hospital I  missed all those  kind of entertaining visuals.  

In my bedroom I have all my own things hanging on the  wall. 

I used to buy The Face magazine and made a copy of it  in clay as a low-relief  ceramic. Throughout the day, when the sun is shining, it changes all  day long because it casts shadows in a different way. 

 I missed having that kind of rich texture and visuals to enjoy. 

I’ve got a couple of amazing  embroideries from the Miao tribe in China that I’ve had framed. They are very detailed… fantastic.. dream-like mythological designs from  clothing – absolutely gorgeous. 

I’ve spent hours just looking at them… and  never tire of them.

It’s hard to believe: I must have spent twenty years looking at all these things. 

When I fell ill I realised I needed something to perk me up so I brought up one of my favourite  sculptures that I carved  in the years before I got cancer. I put that  in the corner of the room near the window so it gets these  amazing lighting effects. It’s very 3-dimensional. And, I only have to turn it round and I’ve got a totally different  sculpture. Which is really nice.

I turn it every few weeks. 

Because it was so satisfying sculpting it, it takes me  right back to the peak of my enjoyment  of carving. For some reason it has a very powerful  effect  on me.

And it also excites me, just by looking at it.

I was carving it when I started to feel ill.

Then suddenly I had to stop because I couldn’t pick up  the chainsaw and the  chisels… it was too heavy work.  Because I stopped in the middle of my excitement of carving  I feel  I’ve still got loads of  things I want to do. 

That piece in the corner  is my future… if I get my strength back.  It’s a pointer into the time ahead – if I am lucky. But, it is still very satisfying.

Those are the things  I missed about my home environment.

And obviously having the family come in… knocking about the room and teasing you and larking about – because the nurses aren’t like that. Though actually, one or two of them did have a great sense of humour.

My illness was gradual. 

Within about two or three months I was declining rapidly.

I stopped being able to read and my walking reduced dramatically. I used to be able to walk 10 minutes to the letterbox,  and  then just being able to do one round of the garden.  That happened  over 2-3 months, and then I  ended up more and more in the bed. 

In hospital the worst side of it is when people walked through door,  I didn’t  know what was going to happen.  

I often wasn’t warned. 

I remember two  surgeons  walking straight into the room and they just started working on my head.  

When they put the shunt  into my brain it has magnets in it so they can adjust the shunt from the outside without cutting me open. They had these tools where they would push and press  with magnets to re-adjust the shunt inside my brain to  alleviate any pain I was having, or headache.

When someone walks in you just didn’t know what they were going to do to you.

There was only the cleaner  I could rely on. She would just clean the room and go. 

In some aspects you are just like a baby.  

Your bladder doesn’t work, your bowels don’t work, your nappy is just changed regularly.  You are completely helpless.  I’ve never known anything like it before …. I’ve never been that vulnerable  in my life.  

There was a nurse who would come in at 6.30am and just strip me down naked and wash me. I just had to get use to that. Because it had to be done.

The professionalism of the nurses was incredible; the way they put you at ease… and to keep your dignity. I thought  that was an incredible skill. So you are not miserable with it. 

But… in hospital the food was  very poor and inappropriate for me as a vegetarian.  I missed having good food.

Visiting time really was my handle on my mental health.  

There was the trauma from all the pain I had gone through but also, I was shocked: I couldn’t quite work out what  had really happened to me.

I went in to hospital to  have this stem cell treatment for my cancer. Then when I woke up  something else had happened to me; I had got meningitis  and brain surgery. 

I was a bit out of it and was struggling mentally with it all.  I was  quite frightened about what could happen.  

And so when my friends turned up we would  get into these really long conversations all about our experiences and our memories…  and our adventures.. and what they are doing. 

My mates  in London tend to get around a lot and do stuff so they had  lots to report back to me about  their travels and their  visits to the theatre and the cinema .. and getting about and going travelling around England.

For me that was just fantastic. 

I lived through their accounts of their life.

Getting home was enormously exciting. 

It was Christmas Eve. It was absolutely brilliant – and a bit unexpected. 

The doctors and  nurses weren’t communicating very well and the doctors thought I was going on to go to a rehabilitation hospital, but the nurses knew  that they could get me home.

It was pretty amazing.

I was going to come home the day before Christmas Eve but the pharmacy couldn’t get the drugs together so I had to  be patient. But I am used to that now. I know  that discharge is a very problematic thing. You mustn’t get too excited.

It only happened  because I could show them that I could conquer …..  and I could get upstairs. That is the problem with my house. I had to  be able to do the stairs. And I was good at that. 

When I got home I could get up and down the stairs. Brilliant!

At home, suddenly  I was walking about.

And  I didn’t have to use the zimmer frame because  there are  walls and things to hold onto. 

In the hospital they are paranoid about you falling. The fall is the big  terror for the nurses.  And so they always hold onto you as you walk with a zimmer.

The minute I got home  the freedom was immense.  Staggering to the fridge..  going to the toilet… actually sitting down and getting the timing right. All that slowly  came back. 

It was just exquisite. 

My wife bought us all  electric blankets so I had this  unbelievable sensation that I had never had before of heating the bed before I got it in.

That was brilliant for all my aches and pains.

Some parts of my body  are finding it difficult to repair – such as my waist. Because I had lost the ability to walk all the muscles, my legs and hips, had to knit together again.  There was still a lot to do on  those muscles and so being able to lie down and have heat going through really helped my mobility.

My first bath at home was unbelievable. It was… amazing. 

For two and a half months  I had only had hand washes.  So… immersing yourself in a bath…

Gosh… I don’t think I will ever forget that.  

I have been getting  outside and walking up and down my street but I think I over-did it and I’ve had  a bit of regression because the area  around my hips is inflamed.  And so I am  pulling back and doing less. I’m   just walking in and around the house and enjoying the freedom of that.  

At home I have more purpose. 

When  you are in bed in hospital there’s nothing you ‘need’ to do.

You are not needed. You can’t produce or  make anything. 

I am a maker. I like  making things.

Suddenly…. now I can sit at the table and prep all the meals. I can just sit – I can’t stand – but I can sit and peel the onions and the carrots. My son will say what he is going to cook and I will prep it.

I love having a purpose. It’s about having a job and being part of the machinery of family life. That is brilliant.

I seem to have effortlessly  glided into manoeuvring about the house. 

For me now, it’s really easy getting around the house but I have an awkward walk and my balance isn’t  100%.  I have to be very careful. I think I have done well  not to have a fall because I’m daft.. and  will twist around and try to do things.

But, I’m doing alright.

We have lived in this house for eighteen years. 

Our home is a detached two storey house, in the style that is very popular in Sussex, of brick and tiled walls. It’s a kind of mock-cottage look… with a porch and … red tiles on the roof. It sits on a cul-de-sac. There’s a lot of trees around. 

It has four bedrooms, with one room en suite – and a bathroom. In the  lower floor there is a kitchen and a dining area knocked through so it’s one big space from one side of the house to the other. You go through the corridor to a large sitting room and we added on a studio.

When I first saw the house…for me the garden was  the clinking deal.

It has a good sized lawn for romping around and a vegetable garden with a couple of green houses and a summer house.

I’ve always had an ambition to grow vegetables and grow my own food – especially things I  particularly like to eat that are more difficult  to get, or not always available. Like… globe artichokes or Jerusalem artichokes… gooseberries and rhubarb and things like that. It’s been a great delight. 

When I retired the timing was perfect.  Unfortunately, I didn’t know anyone who was a gardener so I had to spend some time learning about it.  It also meant I had space to do my carving in the space we had outside. 

It’s very quiet in the garden.

Often, but not regularly – because  I’m not very disciplined –  I like to meditate and like to sit and stare… and soak it all in for long periods of time. 

The garden helps me do that, especially as I’ve got older. 

That is actually an  activity for me:  just staring at the garden and watching  and sort of auditing the insects in  my garden… and the animal life and  growth of it all. 

Funnily enough, I didn’t really experience lockdown like everyone else.

Because the cancer was closing me down I kind of pre-empted the whole experience.

I wasn’t living a full active life and was already become isolated, going out very little.

For me, lockdown didn’t have that juddering halt that everyone else had to experience  of things stopping. 

I had been slowly sliding into that state  for a while. It  had become a way of life for me, and I  was already starting to talk endlessly  to my mates on the phone.

I have come a long way!

What is brilliant is…..the stem cell treatment to counteract the  cancer seems to have worked!

I’ve got my brain back!  

And I’m reading a book  now… and I’m  loving it because I’m just sailing through this book.  And that is absolutely brilliant.. getting your mind back. 

So, despite being limited  physically,  I can  enjoy an awful lot of stuff. 

It will be a few months before I can visit my home city so instead  I am listening to Alan Bennett’s diaries. 

He talks about  things in Leeds that are so  intimate for me.  Just hearing  …Headingly.. Armley.. Hyde Park… all these places  are so familiar to me. And then out of Leeds up towards Settle… the Moors… When  he lived in London he lived in Primrose Hill – my  part of London so it’s great listening to all of that. 

 At the moment I’m living through his diary 

Before when I was ill I watched so many films but  I could just do  five or ten minutes  at a time. But I can do a whole film now. So, I am really enjoying  Netflix in a way that I never did before. 

My son  has Movie which is a sort of arthouse  site, and so you get to do a lot of travelling in those movies. I watched one  about Algeria – I am never ever going to get there..  but the way they took you through Algeria was amazing.  I love all those travel films.

In Brighton I was used to the doctors. They had a better way of talking to you; with a sense of care and attention and interest in  what your thoughts were and how you were feeling about things.  

They were able to go from the scholarly gravity of the situation to a little bit of  levity, a joke and a laugh. 

When I got up to London the doctors there didn’t have the time. A lot of them  were very grave and weren’t able to share much other than the medical symptoms and situation. 

Because I caught what was a very strange form of  meningitis, a lot of doctors would come by just  to look at me. There  are only 30 other accounts, so it’s a world medical record.  

Some doctors came and just said: Bloody Hell!

You are so lucky. We can’t believe what happened to you!

They had read about it  and just had to visit  to say how amazing it was the doctors actually found  the medicine that killed the fungus, and that  the surgery worked so well. 

They were all just so pleased that it worked – because it was touch and go.

Every day I notice something new….. 

Like noticing …that  I went through a certain movement  smoother than I’ve ever done it before. No pain….  I notice things like that all the time. 

Or, I just got up …without  touching the table to hold on to.  Or, without  using the arms on  the chair- I just stood up!  Things like that are really noticeable because  they are so progressive.  

That makes the day so enjoyable.

The body is amazing about repairing itself. Bloody amazing!

At home I really enjoy having all the art around me.

We’ve packed it with stuff that I really enjoy. The  sculptures are so important to me and are dotted all around.

There are have two downstairs  and so when I  lie on the settee  in the sitting room  I spend ages just looking at them –  never taking them for granted. I always enjoy them.

And, the  other thing of course, is that I turn them around all the time so they look different.   

My daughter bought me an incense burner. When she comes in to say goodnight she lights the incense burner with a new scent and so  I’m left for the rest of the evening with this lovely perfume. 

In hospital…you don’t get a sense of ‘fresh’ air. 

Quite soon after I got home I went with my neighbour  – who is brilliant –  and always up for taking me anywhere, anytime, to  this amazing coffee roasting  place. Because it’s a factory they leave the doors open and so  you  sit on the settee  looking out of the roastery across at these  massive white cliffs. 

And so…we  sat there in the cold.

But I had  dressed up really warm and it was just fantastic.

It was  intoxicating just sitting there breathing in the chilly air… with  the sunshine bouncing in.  

That was a very intense  moment for me… 

To be out there, in it, and comfortable…  And loving it!

All photos by Respondent