203. How do You Know?

Recently, there seem to have been a lot of news features on television about older men suffering from dementia.  As I am now well entrenched in the ‘old age’ category of the population, becoming demented is something I think about now and then.

Quite how old I am was forced into my consciousness this afternoon when, completing a survey from The Stables, a nearby music venue, I was asked to indicate my age by putting a tick next to the right category.

How insensitive of them.  I was given 14 rows to peruse with the first being 0-14 and the last was 75+.  Why have groups of 5 and not 10 years?  

36-45 would be much more sympathetic than 36-40 followed by 41-45.  Then, I would have put my tick in the eighth row and not the fourteenth.  It would still have been at the bottom of course, but at the bottom of a much smaller tower.  It wouldn’t have made me feel and appear quite so ancient.  Incidentally, the final age group on the NHS website is 91+.  That’s more like it.

Every day for the past 20 years or so, I have completed a Sudoku puzzle rated “Super Fiendish”.  At first, I did them because I enjoyed the challenge but recently, while doing one I keep thinking something like, “This must be helping to put off dementia.”

There is a timer on the screen ticking away as I do the puzzle.  I don’t know why it’s there and I never used to pay any attention to the time it took me to complete a puzzle but nowadays, I do keep an eye on the clock.  Today, it took me 37 minutes and that is worryingly slower than usual, especially as Caroline rattled it off in 9 minutes.

This brain damage business reminds me of something that happened ten years ago.  We were in France on holiday with Caroline’s sister and her family.  Oscar, Joanna’s elder son, who was 12 years old at the time, was playing around on the roof of a shed.  He slipped and fell, landing on his head and was unconscious for a short time.

As soon as he came round, the questioning began to see if he was OK.  

“Where are we?” asked his mother.  

“Talais in France.”

“What day is it?” Caroline asked him.  

“Thursday.”

“Say pi,” said Timo, Oscar’s ten-year-old brother. 

“3.1415926535897” Oscar began.

“OK, that will do,” interrupted his Mum.  “You’re fine.”

“93238462” 

“Stop now.”  

“64338327950288”

“Stop it!” bellowed his Mother.

“197, but I used to know the first five hundred,” Oscar mumbled, almost tearfully.

In 2008, when I was in Broward Hospital in Fort Lauderdale, Florida, recovering from my liver transplant, I was asked questions by a doctor I had never seen before to find out how my brain was coping after weeks in Intensive Care.  I can still remember three of the questions I was asked. 

“Who was the last left-handed President?”

“Sorry, I’ve no idea.”

“Who’s in charge of The Department of Education?”  

“Ed Balls, I think.” 

“What state are you in?”

“Very ill, I suppose.”  

I don’t know if that doctor knew I was English and not American.  If he didn’t, I expect he thought I was showing signs of dementia.

146. It's a Matter of Perception

In the months leading up to my hip replacement and for some time afterwards, I spent time in a wheelchair.  

I am no expert on wheelchairs but it appears to me that, aside from those driven by an electric motor, there are two types.  There are those that have circular handrims attached to the rear wheels so that the person in the chair may propel themselves and there are also those without a handrim, such as the type found at airports.  They have to be pushed by someone.  That’s the kind I like!  

I know that it’s a dreadful thing to admit but I have a happy memory of being in Kingston, Jamaica , with the temperature in the mid-eighties and being pushed in a wheelchair, over rough, uneven pavements by Caroline, who was sweating heavily perspiring freely while cursing loudly as she stumbled over every lump and bump.  "Travels with a Wheelchair in Jamaica" (Click to see)

People treat users of wheelchairs differently.  We become invisible and almost non-human.  The first time I became aware of this was at Broward Hospital in Fort Lauderdale shortly before I had the hip replacement in 2009.  I had to have my blood tested.

Caroline stood behind me as I “drove” myself to the Receptionist’s counter.  Seated, my head was just above counter level.

“Name?”  She was looking at Caroline.

“My last name’s Wilton,” I said.

“What’s his name?” she asked, ignoring me and looking at Caroline.

“Terry Wilton,” Caroline told her.

“I just told you that,” I said, a little petulantly.

“Date of birth?” the Receptionist asked Caroline again, still completely disregarding me.

I had become completely non-existent.  It was if Caroline had left me parked somewhere and gone to register me on her own.  It was a frustrating and a slightly humiliating experience. 

It got worse.  After registering, we were sitting side by side in the waiting area waiting for my number to be called.  A nurse came over, walked past me and stood next to Caroline.

“Is he good with needles?” she asked.

“Ask him.”

The nurse sighed, turned and grudgingly asked me.

Nowadays, back in the UK, I never need a wheelchair except at airports. I can walk quite long distances before I feel any pain but what I can’t do very well, is just stand and wait and we seem to be expected to do a lot of that at airports.

The only real drawback is that on arrival anywhere, I have to wait and be the last to leave the plane.  However, that is a price worth paying, as on departure, I am whisked through, past all the queues to my own designated security checking station and then, straight on to the plane.  As she is accompanying me, Caroline enjoys that privilege too.

At some airports, Caroline isn’t allowed to be my Pusher.  At Heathrow and Miami, only trained and qualified people are entrusted to push. Once, on arriving at Heathrow from Cayman, we had to wait for more than an hour and a half for someone to push my chair.  I had a bit of a moan and was upgraded to Business Class on the way back, so that worked out quite nicely.

Like people working in hospitals, I am invisible to airport staff too.  

“Is he able to climb the steps to the aircraft?” Caroline was asked by someone at Jersey airport last week, as I sat in a wheelchair next to her.

“Yes, I am,” I shouted up at the woman who, possibly didn’t hear me or was being deliberately rude.  Either way, she didn’t make eye contact with me.

“There’ll be someone there to assist, just in case,” she told Caroline, as I realised that I was not only invisible but mute too.

After a forty-minute flight to Luton, there was further indignity to come.  A wheelchair was waiting at the bottom of the steps.  I sat in it and Caroline began to push.

An attendant in a high-vis vest came running over.

“Hi madam.  Leave it to me.  I’ll take it off your hands.”

It!!!   I hope he meant the chair.  

I’m certain he did because I was invisible at the time.

58. At the End of The day

This will be my last regular posting.

I started writing down my thoughts and experiences and posting them in a blog when I realised that I was well at last and probably had more than just a few months to live.   I felt terrific and as happy as I ever had done.  For the first time, I understood just how close I had come to death.

Since the first posting in January 2010, I have had visitors from every continent except from mainland South America.  I have a regular visitor who is in Trinidad but as far as I’m concerned, Trinidad is the Caribbean and not South America even though it’s only 7 miles off the coast of Venezuela.  

I was very excited in August when I had a visitor from Guayaquil in Ecuador but I found out later that it was someone from England sitting in an Internet Café on her way to the Galapagos Islands so that doesn’t count.  There have been visitors from 54 different countries and 632 different towns or cities.

At the end of 2009 Caroline felt that my palingenesis had advanced sufficiently and that I was mentally strong enough for her to tell me thing that until then, she hadn’t.  (I’ve just discovered ‘palingenesis’ and I love it.  Caroline says that it’s pretentious to use it but it’s staying in.  It means exactly what I want to say.)

She told me about the senior doctor in the Cayman hospital who told her that there was nothing more medically that could be done for me and she should just accept it.   He went so far as to discharge me and call the Hospice and ask them to start caring for me but Caroline refused to take me home from hospital.

"I'm not taking him," she told them and because I was disabled and unable to walk or look after myself, there was nothing much they could do about it and so I stayed.

I was blissfully unaware of all that but when I was out of the woods, Caroline told me about it.  The only memory I had of that particular doctor was of him standing over me one day as I was lying in bed.  

He was totally ignoring me while he made flirty and suggestive remarks to a nurse who was standing on the other side of my bed.  He seemed to have completely forgotten that I was there, three feet below him and he carried on making more and more outrageous comments and suggestions to her while she became more and more uncomfortable and embarrassed.  When he started to tell her how he wanted to rub sun oil into her thighs, even I - a man of the pre-PC era - felt his behaviour had gone too far.  It was blatant sexual harassment of the worst kind.

About 15 months after that, I was walking in a long corridor in the hospital at about 9 o’clock at night.  The corridor was empty, apart from one other person, a doctor in his white coat, walking about ten yards ahead of me.  I had been visiting a friend who had been admitted the day before. A nurse came out of a side room.  

Immediately, the doctor, presumably unaware that I was close behind him, made a comment about her bottom.  The nurse said nothing but went back into the room she had just come out of.  Even though he had his back to me, I instantly realised who the doctor was.

“Dr Cummins!” I called out.  He turned around and looked at me.

“Yes.”

“Do you remember me?”

“No,” he said.

“I’m Terry Wilton,” I told him.  “Remember me now?  Liver problems.  Last year.”

“No. I’m afraid not.”  He turned to walk away.

“You must do,” I insisted.  “I was in and out of here for about ten months.  You were seeing me all the time and then eventually I went to Miami for a transplant.”

“No, sorry.  I’ve never seen you before,” he said dismissively and turned away again.

I flipped and I shouted at him, “So, as well as being a totally fucking incompetent doctor and a sexist, predatory pig, you’re a bleedin’ liar too!”

I felt good and when the following week my GP told me that I had frightened him, I felt even better, not just because I had startled and alarmed him but because my GP told me he had let slip that he had known instantly who I was.

Doctor Cummins didn’t know Caroline very well and when he told her that mine was a hopeless case, she (so I’ve been told by others) first of all went bananas and then went over his head, off island to Miami.   You can tell who won and I don’t think it was ever really much of a contest.

Caroline also told me that the transplant team at Broward hospital, Fort Lauderdale was divided as to whether it was worthwhile and responsible to put me on the transplant list and how it was one man’s casting vote that gave me, literally, the chance of a lifetime.   

She also told me that the person who had died and whose family had given permission for his organs to be used to save my life and the lives of several other people too, had been a 58-year-old man.

When I had absorbed all that, she began to tell me what a difficult patient I was and how completely bonkers I had been for several months.   My lack of lucidity and memories was, in many ways, a good thing.   It meant that I had no real sense of the passage of time and so the dull, boring months of confinement in Intensive Care, the ward and rehab, passed without any grumbling or complaining from me.  (I have been told that the last sentence is completely untrue but as that’s just someone else’s opinion, it’s staying in.)

Caroline also told me of the roster of family and friends that she organised to come over to Florida to visit me in order to give me something to look forward to and to be with me at the times she had to be back at work in Cayman.   Sadly, I have virtually no memories of any of those visitors and apart from the transcript that Roger made of a particularly stupid and unintentionally funny conversation that I had with a doctor, no proof that any of them were there.   I’m sorry if you were one of them but if I was as embarrassing to be with as I was when Roger was with me, it is probably just as well that I have no memory of it.

Apparently, for a week or so, even though I can only speak English, I would only watch Spanish language TV channels and I was hooked on their soaps.   Caroline says that if she switched it to Fox I would throw a major tantrum.   As a matter of fact, I still would - but for different reasons.

I was also certain that some days had two consecutive nights.   That’s hard to explain and you may not understand it but what used to happen was that I would wake up, look at the clock and see that it was perhaps seven o’clock.  I’d think to myself, “It’ll be daylight soon.   Nearly time for breakfast.”  But daylight didn’t come and nor did breakfast.   This happened often and it was very confusing.   I suppose that I must have been sleeping through all the daylight hours.

Caroline says now that I was not sleeping through the days.  I was confused because I was, “fucking bonkers.”  - a medical term, she assures me – and I had no idea of the passage of time.

In January last year, I suddenly thought that if I had died my grandson, who was 21 months old at the time, 5000 miles away in England and whom I had met only once and couldn’t remember, would never have heard about any of my experiences.   He would never have really known what sort of person his Grandpa was.   It was always with William in mind that I wrote the first, subsequent and even this piece.  (Yes William.  Grandpa used to swear sometimes and Gamma swears a lot.)

I sat on the porch, typing away, with the startling blue Caribbean Sea in front of me, the parrots squawking in the palms around and the majestic frigate birds making graceful arcs in the sky above me, thinking that this was probably how Somerset Maugham and Dick Francis, who was living on Grand Cayman at the time, had done their writing.   All my postings were written like that.  It’s somehow not the same in the late autumnal murk and the depressing winter gloom of Winchmore Hill.  I’ve written little in the UK. 

This is the Cayman parrot.  When we first arrived there were lots of them.  They were as common as the magpie is here.  Numbers dropped during the five years we lived on Cayman and now they are only seen out of town.

These are frigate birds and this photograph is here for me.  It’s me being self indulgent.  Some mornings, I would lie on my recliner in the shade of the porch and look up to see as many as fifteen of them wheeling around riding the thermals.  They never did anything but just glide around and in five years, I never saw any frigate bird flap its wings.

So this is it.   Check back occasionally please because if I ever do get the urge to get something off my chest, I will post it here.   I hope that any that you may have read have been of some interest.

This is my 58th posting.  When I put up the first one more than a year ago, I never thought that there would be so many.  I certainly never intended to put up something every week.  You can find any that you missed by clicking on ‘Blog Archive’ at the top of this page on the right hand side. 

What have you learnt about life and me over the last 57 weeks?

1.    Everyone should be on the organ donor list.

2.    On the first Sunday after Valentines Day, tea should be taken with the lights off.  Sports Day

3.    It is possible to categorise your relationships by using  Wilton's Scale of Relationships

4.    The way to make perfect toast. Toast - the proper way

5.    Burns is a crap poet. Hesperody

6.    A handshake is always preferable to a hug. Hugging and Kissing

7.    As a greeting, a kiss is only acceptable when the recipient is family. Hugging and Kissing

8.    The ‘high five’ between white men is embarrassing. Island times

9.    Everyday maths is fun and interesting.

10.  Most inhabitants of Islington in London are a little strange. Chocolate pastry

11.  The authorities in Islington are money-grabbing, thieving bastards. Bloody Islington!

12.  There is only one right way to make tea but many wrong ways. Chocolate pastry    &    Tea and spuds

13.  People whose surname begins with a ‘W’ are destined to a life of disappointment. A - Z

14.  Mick Jagger is not a great cricketer. Name Dropping

15.  I never moan but I do sometimes observe and comment on that observation. I'm Merely Observing!

16.  ‘Christmas confetti’ in Christmas cards is a pain in the arse. Christmas Cards

17.  Some road signs are completely pointless. Signs of the times

18.  There’s a cure for arthritis but it is so disgusting that no one will take it. At last! A cure for arthritis

19.  All-seater football stadia lack atmosphere. Where are the pork pies?

20.  Tipping is a vile anachronism. That won't do nicely!

21.  Middle age seems to end at 60.  At 61 you are officially old. Will you still be sending me a Valentine .... ?

22.  December 26^th 2010 was the best day in the history of the world – EVER! 'THE KING' and Cricket

23.  Both British television and the climate are wonderful.

24.  I am not a deep thinker. Half way?

25.  Everyone should be on the organ donor list.

If you would ever like to contact me, my e-mail address is:

terrywilton@hotmail.com

I am certainly not soliciting messages but if you do write to me, put BLOG in the subject field so that if I don’t already have your e-mail address, I don’t delete it from my junk box.  I will certainly reply. 

42. Predicted Surgery

Texting is not something that I do very much.  To the best of my knowledge I have never instigated a text discourse.  I wouldn’t know how to.  I have taken part in textual intercourse once or twice but only to respond to someone who has contacted me by text first.  “What’s Stella’s phone number?” I was asked recently and I replied, “020 XXXX XXXX” thinking while I did so that it was rude of the person who had asked for this information not to phone me and ask for it.  Couldn’t she face the prospect of talking to me, I wondered?

Predictive text is something that blows my mind.  Sometimes when I have nothing else to do, I start a note on my phone keypad by bashing away at the keyboard without really looking at it to find that I have come up with perhaps, “tydu fofnd cjdh chhxso” which predictably transforms into “G’DAY TRAY FOUND CHISEL”.

Then, I write a posting using those words, plus a bit of padding, in the order that they appear.  So, it might begin, “G’day Bruce, I was looking in the tray you lent me and I think that I’ve found the chisel that you told me you lost.”

Three of the 44 postings I have made since January are actually written by my iPhone and only the punctuation and padding is mine.  

Sometimes predictive text can cause problems.  I was pushing a trolley around Sainsbury’s on Tuesday and I had got everything on my list except one thing: STORAGE.  I had no idea what that meant.  I couldn’t remember writing it and assumed that Caroline, knowing that I was going shopping, had added it to the list on my phone.  I thought that it was a bit vague of her but nonetheless I bought three storage jars.

Four hours later as I began to prepare the dumplings to have with our stew, I realised what had happened.  My phone had not recognised ‘ATORA’, which is a brand of suet and had altered it to ‘STORAGE’.

********

I have had five surgical operations in my life - four under general anaesthetic and one with a local.

The first was thirty-five years ago when I had an abscess removed from my upper jaw.  It was causing me no pain at all and I would not have known that it was there if it hadn’t shown up on X-rays.  I agreed to the operation because in those days one never argued with doctors or dentists.  

In the 70s, Barnet Hospital was not the multi-million-pound showpiece that it is today.  It consisted of one, fifty-year-old central building and about twenty satellite prefabricated buildings that housed the various departments.  The ward that I was admitted to was one of these prefabs.

The procedure was to take place under general anaesthetic and within an hour of admission I was lying on a bed feeling a little drowsy, very apprehensive and nervous.  A nurse gave me an injection in my bum and soon afterwards I fell asleep.  I was woken by the spatter of freezing cold rain on my face.  

I was lying on a trolley being pushed through driving rain along a roadway towards the operating theatre.  I looked up to see who was pushing me and saw two hospital porters. They were both holding an umbrella to keep themselves dry (not me) and one was smoking a cigarette.  We got to the theatre where I remember being told to count down from a hundred and that was it.  

At six o’clock that evening I felt good and told the nurse that I was going home.  She said that I had to stay in overnight.  It was a Wednesday and my favourite TV programme was on at eight o’clock and I was not going to miss it and so I discharged myself.  Several nurses treated me as if I were a convict making an escape but I got out and away.

A few years after that I had an operation, again under general anaesthetic, to straighten the septum in my nose.  The septum is the cartilage wall separating the nostrils of the nose and is, I was told at the time, the last part of your body to stop growing.  This means that it has nowhere to go as it keeps growing and so it may bend and close off a nostril.  My left nostril was permanently blocked.  

Is the septum really the last part to stop growing?  Surely the ears are.  My ears are a lot longer now than they were when I was thirty and if I’d had ears like this when I was eighteen when the rest of me stopped growing, I’d have looked even more freakish than I did at the time.

Caroline made an interesting discovery the other day.  “Your left big toe is getting shorter,” she cried out with some delight.

She’s right.  My left big toe is half a centimetre shorter than the right one and it never used to be.  What’s going on here?  Is there anything else getting smaller?  What next?

Twenty-five years ago, I had a vasectomy under a local anaesthetic.  This was done at a clinic in Soho, central London and my appointment was for nine in the morning.  When I had arrived and registered, I found the part of the clinic where the procedure was to take place.  

I discovered that I was in a group of about twenty men all of whom had nine o’clock appointments too.  We sat on chairs along the wall of a corridor in alphabetical order. Guess who was last?

Every five minutes or so the next one went in and we all moved down a chair getting nearer and nearer to the door.  After the event, the patient appeared in the corridor through a door ten yards from the one he had gone in through.  Virtually every one of them thought that it was really funny to stand facing those of us still waiting and to writhe in agony with their hands grasping their crotch, before walking off grinning.

At last it was my turn.  I had heard stories about how long it took and I decided to time it.

“OK,” said the surgeon, giving me a friendly and encouraging smile.  Last one this morning.  You’ll feel a sharp prick and a little bit of pain and it will be all over before you know it.”

“That will make a nice change from feeling a total prick,” I said, looking at my watch and trying to inject a bit of levity and humour into the proceedings.

“OOOWW!”

“Do you follow football?” asked the nurse who was standing by my side.

“Yes,” I hissed through gritted teeth.

“Who do you support?” she said.

“Norwich.”

“How are they doing this season?”

“OK.”

“Do you see them play very often?”

Look,” I snapped.  “I know why you’re asking me these stupid questions and I suppose it’s nice of you but I’m in a bit of pain and I really don’t want to talk at the moment. So, will you please shut up?”

The surgeon raised his head from between my legs, holding a scalpel that looked as if it had been dipped in red paint.

“There’s no need to be rude to the nurse, Mr Wilson,” he said sternly, waving his scalpel at me.  He wasn’t smiling now.  

“She’s just doing her job and she doesn’t need people like you with that kind of attitude.  So, if you can’t be pleasant, be quiet.”

“OK I will,” I said sheepishly.  “And it’s Wilton.”

He got back to work.  Four minutes 23 seconds.

I was lying on the table before I had my liver transplant when I met the anaesthetist who came over and introduced himself to me.

“How long will this last?” I asked him.

“Why?”

“I’m just curious.”

“It doesn’t make any difference to you,” he said.  If you wake up, the time doesn’t matter and if you don’t wake up, you’re dead.”  

Ten hours!

On April 6^th 2009, six months to the day after my liver transplant, I had a total hip replacement operation at the same hospital – Broward General in Fort Lauderdale, Miami.  As I was coming around in the recovery suite after the operation, I was in a little bit of pain, only semi-conscious and feeling very sorry for myself.  In came Dr Selvaggi, my liver surgeon, who was in charge of my medical care. 

We chatted for a short time and then he asked if he could have a look at my hip.  He lifted the sheet, stared at the hip area for a time and then said, 

“Good job.  What a nice clean cut.  Great amputation.”  

Then he left.  Caroline arrived to see him coming out of the room, absolutely pissing himself. 

“Got him!” he laughed and walked off grinning from ear to ear.  She had no idea what he meant until she came in to find me a little tearful and very upset.

I’ve got at least two more operations to look forward to.  My left knee joint is going to need replacing in a year or two and the bones in my left ankle are deteriorating rapidly.  The ‘avascular necrosis’, affecting my knee and ankle (the symptoms are identical to arthritis but the original cause is different) is the result of the side effects of the massive steroid doses I was given after my transplant.  I am certainly not complaining, however, as it’s a very small price to pay for all these bonus years.