Eye, eye! Part 1

It was Goose Fair time yet again.  That could only mean one thing.  The Park and Ride was out of action.  I had an appointment at the QMC for 8:30am for my pre- op chat.  Now because of Goose Fair, my usual route in was blocked. Normally I park at the Park and Ride and glide in by tram. In my usual parking space was a tall tower with capsules at either end.  The tower would spin vertically while the capsules would rotate to much screaming inside.  I don’t think my eye appointment would be quite so adrenaline pumping.  But you never know…

So how to get to the QMC?  Driving, like for most of hospitals up and down the land, was out of the question.  My husband mentioned I could always park in the special, secret parking space.  Everyone who regularly goes to a hospital has one of these.  My husband’s one was about a fifteen-minute walk from the hospital.  Plus, I don’t think it was that secret anymore. So, what to do?

Another reason why I was also feeling anxious was also due to my appointment letter.  I had a purge of burning my hospital appointment letters after the barrage of MRI scans that I had in September.  In the purge, I had foolishly burnt the appointment letter for my eye op.  Not to worry.  The hospital sent me a text reminding me of the appointment.  However, the text said I had an appointment at the QMC at 8:30am.  Where in the QMC, the text couldn’t tell me.

“Go and ask at reception.” Said my husband.

“But what about data protection?”

“It’s YOUR data for Christ’s sake!”

Good point.

So, I arrived by magic carpet at the QMC and ventured to the reception by the Main Entrance.  They were perfectly happy telling me where my appointment was. We did the usual pre-flight checks.

“Ooooo… summer of ’76 eh? That were a hot one…” said the receptionist who then preceded to tell me her memories of it.  The only thing I contributed to the conversation was, “I think I spent most of it in my nappy.” which wasn’t great.

Anyway, my appointment was in eye outpatients so off I trotted.  When I got there, I was met by a queue of five people and a harassed looking receptionist, searching files.  All of the five people in front of me had appointment letters.  Not good.  The man in front of me in the queue was smartly dressed, wearing a blazer with and RAF pin on the lapel.  I’m not too sure what he was expecting from the eye clinic, but I had the feeling that he might be disappointed.

My turn came and I was shooed around the corner to the pre- assessment part of the clinic.  I went around the corner and was greeted by a huge, empty waiting area.  On the far wall was a huge TV showing Heartbeat.  Strange choice for half eight in the morning.  After about five minutes, a professional woman in a business suit appeared.

“I’m afraid the clinic doesn’t open until nine.”

“Well, my appointment is for half eight.”

“That can’t be possible.”

“Well… it is.”

I was dreading the obvious next question regarding a letter.  But I was saved by a jolly looking nurse.

“Oh! You must be my first appointment.  Please take a seat and I’ll just get my bits together.”

I smiled smugly and the woman bustled off.

Soon I was shown into a small windowless room.  My height and weight was measured as was my blood pressure and temperature.  She asked me a lot of questions as to whether I had any illnesses that I had never heard of.  The life-threatening illness I did have wasn’t mentioned at all.  It soon raised its ugly head when the topic of regular medication came up.  She believed Herceptin wouldn’t affect the sedative.  Phew.

She described what would happen on the day.  I would check in, have the op and then recover on the ward.  Once I had eaten and passed urine after the op, I was then free to go.  As I would be wearing a gown, she strongly recommended that I bring in a dressing gown and a pair of slippers.  The way she described it, it sounded like a visit to the day spa in Centre Parcs, rather than an operation.  Here’s hoping….

The discussion took a strange turn when she outlined what happened after the op.  For twenty-four hours after the op I couldn’t drive, use heavy machinery, use electrical items like kettles or microwaves or sign any legal documentation.  Urm OK…

“Do you have a responsible adult at home to look after you after your op?”

I snorted.

“Well there is my husband…”

You could tell she had heard this joke many times before.  I didn’t need to finish the punchline.  I signed something to say that I had understood what was going on and off I went.  Spa day at Centre Parcs.  That’s all it was…

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The Joy of MRI

Hospital appointments are a bit like buses.  You wait ages for one and then three come at once.  I have four lined up in September.  Two are scans, one is a chat about the scans and the other is a chat about my mouth.

I had the first one this week which was an MRI of my head and neck.  I have this every six months, so I know the drill.  I guess the only thing I could compare it to is that it feels like is if you are a frequent flyer.  You go through all the pre-flight security and checks first.  Then you are immobilised for forty-five minutes to an hour.  You wake up and are on your merry way.  The only exception is that with flying, the stewardess doesn’t wake you up midway and inject you with dye.  That would make flying a bit more interesting.

There are two hospitals in Nottingham and I have had MRI’s in both.  In the larger of the hospitals, the Queen’s Medical Centre or QMC, the MRI scanner is enclosed.  It feels like you are being rolled into a dark tunnel with your nose only centimetres away from the top.  At the other hospital in Nottingham, City Hospital, you are enclosed, but it’s light and airy.  You can take deep breathes and dream away.

My appointment was at City and according to the letter, it was in a temporary unit outside the maternity department.  Mmmm.  So, I made my way to the maternity department.  There I was greeted by the sight of five heavily pregnant women walking round the circles with dressing gowns on.  Husbands and partners were trying to help but they weren’t.  A nurse appeared, so I asked her where the MRI unit was.  She pointed to a gleaming white metal shed outside, opposite the entrance.

I went outside and the signs led me up a gangplank.  Uncertain what lay at the end, I went up.  At the end, behind some automatic doors, was a small, cramped reception area with no one in it.  I stood by the desk and I could hear laughter.  This happens quite a lot at receptions.  There’s no one there but you can hear sounds of life, sounds of fun.  It puts you in a bit of a dilemma.  Do you want to stop the fun by announcing your presence?  I was wrestling with this when the phone rang.  Phew.  A jolly looking receptionist appeared, smiled and answered the phone.  After she finished the call, she asked my name and I was checked in.

Five minutes later a nurse appeared to run through the pre-flight checks.  As the “M” is MRI stands for magnetic, these checks are mostly concerned with whether you have any metal inside you.  You would be amazed with the amount of metal that could be secreted in you after an operation.  Shunts, clips, staples, you name it.  They all could be in you.

The nurse was visibly relieved when she found out that I had had many MRI’s.  She didn’t really ask me why.  But she was relieved and that was all that mattered.  She gave me a gown to change into and said she would be back in five minutes to take me through.  I hate hospital gowns.  This one was the old style where you had to do it up at the back.  Thankfully I could leave my jeans on so I wouldn’t be mooning anyone.  Well not today anyway.  After my struggle with the gown, I noticed a strange notice on the back of the door.  It said that if you had changed into a gown, leave the door open a bit and a radiographer would bring you through.  I opened the door about half an inch.  Waited five minutes.  Nothing.  I opened it half an inch more.  Still nothing.  I did it again and got a response.  So next time one and a half inches it is.

She took me to the scanner.  There I lay down on a table and had a cage placed around my head.  I was given headphones and a buzzer to press if I needed to stop the scan.  The table then wobbled into a brightly lit scanner.  On the cage was a mirror.  The mirror is angled in such a way that you can see what is happening in the scan control room.  They could be doing the Paso Doble in there.  You can see it all in your tunnel.  There is a series of loud clunks and the scan noisily begins.  I love these noises.  In a weird way because they are repetitive, they are very relaxing.  I often get lulled to sleep.

After fifteen minutes or so, the noises stop.  You hear a muffled voice.  In the mirror, you see a nurse enter the room.  You are wobbled out and the nurse prepares you to inject dye into you.  This is so that any anomalies can be seen clearer in the scan.  The cannulation went well this time but there have been occasions where I’ve had three plasters or four stickered on me thanks to failed attempts.

You are then wobbled back in for the final part of the scan.  Sometimes the dye makes me feel a bit queasy.  A few deep breathes usually cures this and I’m soon dozing away.  After another fifteen minutes, it’s all over.  You are wobbled out and told to drink plenty of fluids to wash the dye.  So up you get, back into the world of circling pregnant women.

Adventures in the Eye Clinic

The allotted day and the allotted hour had arrived.  I stood in the queue awaiting to be checked in.  A lost looking ambulance driver was wandering round and round the eye clinic, trying to find his stricken patient.  A nurse finally escorted him to one of the clinics. I didn’t see him again.

I reached the head of the queue and readied myself for the pre-flight checks.  Apart from stating your date of birth and the first line of your address, the eye clinic also throws in your GP’s name and the last four digits of your contact number.  This can throw people sometimes, but I was prepared.

I was called in for an eye test.  This is the eye clinic equivalent to weighing you, which happens at other clinics.  It’s done.  It’s noted and never referred to again.  The nurse sat me down and began reading a letter.  It was a very long letter.  It looked like it had been written by Mr Q.  I had done some dyslexia training at work where the tutor gave us something to read, and then spoke instructions at the same time.  It was impossible to read and listen and the same time, which was the point they were trying to prove.  Aware of this I sat silently… for five whole long minutes.

She looked concerned.  I was not what she was used to.  We did the eye test and I did quite well.  She took me to a set of chairs where I sat and waited.  I was called through quite quickly and Mr Q was sat there, looking chirpy as ever.  I wondered how he managed to get into the clinic without any detection.  Maybe he tunnelled in or transported his way in as on Star Trek.  Mrs P, the eye consultant, was also there and looked a bit flustered.

I gave my history and got the impression that Mr Q was taking a back seat in things.  It wasn’t his clinic after all.  After listening we went through the options.  It involved two operations.  The first one involved tightening the lower eyelid.  I won’t describe the gruesome details but it would be done in day surgery and involve heavy sedation.  The second op would involve gold implants being inserted in my upper eyelid.  Once that had been done, Mr Q would rush in and sort my mouth out.  I would be knocked out for that one.  Phew.

So that was it sorted.  Mr Q rushed off saying that he would confirm dates with Mrs P and that was that.  As she started completing the consent form, Mrs P stopped.

“You know, I think the damage is so severe, we may be wasting our time with the eye op…”

What?  There was a pause.  It was like she was prompting me to decide about it.  I stayed quiet.  She looked at my notes.

“You are seeing Mrs T… what does she feel about it?”

I said that she hadn’t really given an opinion on any kind about it.

“She’s in clinic today.  Do you mind if I discuss this with her?”

I nodded and five minutes later a smiley Mrs T appeared.  She seemed the happiest I’ve seen her.  I guess she prefers being around other doctors rather than awkward patients.  They started speaking medical gobblegook to one another.  Then a decision was made that could be explained to me in English.

They would do the first op on my lower lid but not the one on the upper lid.  Mrs P seemed quite happy with that.  Mrs T left the room and the drafting of the consent form recommenced.  The op would take place in November or early December.  I would get a letter confirming it all.  She would let Mr Q know of the change of plan.  How he would take it? Lord knows.  Thankfully I had booked another appointment to see him in September just in case he hadn’t been able to make the appointment today.  We could discuss it all then.

I left, consent form signed to have before photos taken to be scrutinised by eager medical students.  It’s the pics after that I felt slightly apprehensive about…

Fargo

“This is a true story.  The events depicted took place in Minnesota in 2011.  At the request of the survivors, the names have been changed.  Out of respect for the dead, the rest has been told exactly as it occurred.” Welcome to Fargo where all is not what it seems.

The latest series of Fargo dealt with a story as old as time.  Brothers, jealousy, death and money.  You can’t get any more ancient than that.  Yet it was the ending that was so brilliant.  The big baddie of the piece V.M. Varga, who is a Brummie of course, is finally caught by a freshly promoted Gloria Burgle who now works for the Department of Homeland Security.  Gloria revels in telling Varga the fate that awaits him.  Locked up in Rikers Island with no hope of parole.  Justice will be duly served.  Varga has other ideas.  He mocks Gloria for her naivety.  He is the grease that keeps the corrupt world we live in turning.  He calmly informs her that someone far superior to her will walk through the door, have a quiet word and he will be free to go on his merry way.  Gloria isn’t convinced.  Varga insists it will happen.  The camera then focuses on the door.  Who will come through?  Will it be Gloria’s federal agents or Varga’s evil overlords?  We are left hanging.

I had a similar experience in the eye clinic.  Well sort of anyway.  Last week I received an appointment to go to the eye clinic on Saturday at 1:30pm. Welcome to the seven day a week NHS folks!  Lovely but I had another appointment at the eye clinic in two weeks’ time to discuss my operation.  Maybe they had brought it forward?  I didn’t recognise the name of the consultant, so I was hopeful.

After the obligatory eye test, it is the eye clinic after all, I sat and like Varga, awaited my fate.  When the door opened it was… Mrs T. Great.  She ushered me in.  I mentioned the operation.  She wasn’t interested in the slightest.  She asked me about the cancer.  I wasn’t interested in telling my story for the umpteenth time.  We had reached a stalemate.  She wasn’t interested in me and I wasn’t interested in her.  Yet there was a chink.  She booked a scan to check the nerves in my eye.  That could be good and quite useful for the surgeon.  I explained I was on holiday the week following the appointment.  She snorted.  Did I really think the scan would happen that quickly?  She said that she would see me in three months’ time.  Not before I see someone who can actually help me first.

Scan Results

The following week after my appointment with the plastic surgeon, I was back in Oncology to get my results from my MRI.  Oncology is a pretty grim place.  It’s usually packed so it becomes a wasteland where you seem to fade into the crowd.  However, I now know how Oncology works.  The key thing is to get in early.  So, I was feeling quite smug, sipping my Costa coffee, waiting for Oncology to open at quarter to nine in the morning.

“You’re keen.” joked the nurse as she opened up.

I checked in and carried on reading my book.  Bang on nine o’clock, I was called through.  There’s an awkward bit in every Oncology appointment.  They call you, put you in a side room and make you wait for a further five minutes.  You can sometimes hear the doctors and the nurses in the next room, talking about you or other patients.  Then the consultant will open the connecting to door to your room and the magic can happen.  One time I brought my husband along.  As we waited in the side room, we could hear the doctors and nurses laughing in the next room.  My husband was livid.  He knocked on the door and asked when, if ever, they were going to get around to seeing me.  That didn’t go down too well.

This time I didn’t have to wait long as my consultant appeared after about five minutes.  I was lucky to see her.  I’ve met people who have gone through their treatment and have never met the mastermind behind it all.  I guess being rare has its advantages.  The results hadn’t come through.  I wasn’t surprised.  The longer I have lived with cancer, the longer it takes for my scan results.  The worse happened last summer.  It took a staggering five weeks to get them.  I was beginning to know the receptionists by name which is always a bit worrying.  I mentioned about the plastic surgeon to her.  She seemed interested but didn’t offer any advice. It looked like it was something that only I could decide. Arrangements were made so that I would call the following week to get the results.  If they were bad, they would call me first.  It’s been over a week and there has been no phone call…

Bonkers Part 2

The allotted day had arrived.  Even worse it was Tuesday.  Tuesdays are rubbish for me.  Luckily, we are in exam season.  So, I left my class in the hands of a bemused admin assistant to invigilate yet another mock exam for them.  They took this quite well apart from my manager who still signs off any email I send her about my appointments with, “if you could rearrange this when you are not teaching next time.” Yeah, right.

The ENT department is split into two reception areas.  Normally I am in the second reception area around the corner.  I approached the first reception area, feeling nervous.  The receptionist was on the phone speaking loudly.

“Yes, it’s on the FIFTEENTH.” Pause. “Not SIXTEENTH.  ONE FIVE.” Pause “We’ll send you a letter.  A LETTER.”

She hung up and rolled her eyes.

“Yes?”

I said my name and Dr Q’s name.

“Well it looks like you are here today.” She said sounding quite surprised. “Take a seat.”

I obeyed and got my book out.  After about twenty minutes I noticed something.  Patients were being called out two at a time, going through some double doors and not returning.  Bit worrying that.

After about forty-five minutes mine and another patient’s name were called.  We were escorted by a nurse through the double doors into yet another waiting room.

“I’m sorry but it’s another hour wait from this point on.”

I was on my own but the other patient had his wife with him.  We all sighed in unison.  He reached for his phone and both his wife and I resumed our books.  We were lucky.  After about twenty minutes, the couple were called through.  This took the wife by surprise. She spent a good deal of time faffing about much to the amusement of the nurse and her husband.  I smiled and carrying on reading.

After another twenty minutes, I was called through.  Where had the couple gone?  It was my turn for a bit of awkward faffing.  The nurse led me to a room where sat Mr Q looking immaculate as ever.  I sat opposite him. The nurse took a seat in the corner of the room, facing me.  Mr Q and I exchanged pleasantries.  The nurse looked bored.  I was the last patient in the clinic so it must have been a long morning.

“So, can you remind me why you are here?” asked Mr Q.  I gave him a detailed account of the last six years.  It felt quite strange being encouraged in giving such details.  I have become so used to giving quite a watered-down version of events.  He listened and made notes.  After my history, he asked me to do various facial exercises so he could check out how much movement I had in the left side of my face.

“OK.  What for you is the most important thing to be done?”

I was flummocked by the question.  I’ve never been given a choice before.  I remembered our previous appointment.  He had said the he didn’t want to tread on the toes of the eye people.  So, I said I wanted my mouth sorted and then maybe the eye.

He looked puzzled.

“If you want my opinion, you need to get the eye sorted first.  I’ll refer you to Dr S to advise you on that…”

He outlined a possible procedure that involved cuts to my lower eyelid and weights that could be either gold or platinum, inserted in my upper eyelid to ensure my eye closed properly.  Crikey.  But this was merely the beginning.

Once I had had my eye sorted, then work could start on my mouth.  There were three options:

  1. A hoik up. This was the easiest procedure. He would cut along the smile line on the left side of my face. Hoik it up. Cut behind my ear and use a bit of my thigh to replace any facial tissue he had to get rid of.
  2. The thigh nerve. He could take a muscle from my thigh that had a nerve in it. He would attach this to my face and attach the nerve to the nerve endings near my temple. I then could have a faint smile. I think he ruled this one out as he felt that I didn’t have enough nerve endings in my left temple. Lovely.
  3. The nerve graft. The complicated one. A piece of my right facial nerve would be stretched to the left side of my face. Once it had been grafted over, a piece of muscle could be attached to it and over time, I would be able to smile. This would involve two operations. Although he had done the procedure before, he felt I would be better going to a specialist centre for this op. The centres were in Newcastle, Birmingham and…erm… East Grinstead.

It was a hell of a lot to take in.  I was used to no options.  If there was an option there was only one and I had to have that otherwise I would die.  Part of the reason why our house is in a state in disrepair is because my husband and I are rubbish at making choices.  We are both ditherers.  Now I was being asked what choice I wanted to do with my face.

Mr Q picked up on my anxiety.

“Listen.  There is no rush in any of this.  We can take our time.  Come back and see me in a months’ time and we’ll talk about it further.”

I nodded and looked to the nurse for some reassurance.  She looked blankly at me and escorted me out of the building.

Bonkers Part 1

It started with a rude awakening.  I forgot my husband had booked the day off so I dutifully set the alarm.  The alarm buzzed.  My husband swore. I reached for the headphones of my portable digital radio.  I turned to Five Live.  I like Five Live.  It keeps me awake that sadly The Today programme on Radio Four often fails to do.  In my semi-conscious state, I heard something being mentioned about the Cancer Drugs Fund.  A report had been written saying it was a waste of money.  The presenter said that if you had had experience of using the fund to text in.  After about fifteen minutes, I slumbered out of bed and sent a text saying that I wouldn’t be alive if it wasn’t for the Cancer Drug Fund.  I knew my parents, who listen to Five Live, would be travelling up in stage one of their trip to North Wales for my aunt’s 80th on that Saturday.  I thought that if they read my text out, it might make the journey a bit more interesting.

I went downstairs and made my porridge.  Then a phone call. Private number. Interesting.  A harassed sounding researcher asked if I wouldn’t mind speaking on the radio about my experience.  Crikey.  I had to take the car for its annual service for nine.  If I did the radio, it would be cutting it fine to get there on time.  Sod the car.  I agreed.  I managed to contact my parents who were about to start on their odyssey to Wales and left a voicemail for my sis who had the audacity to be working.  My husband carried on sleeping.  The allotted moment came.  I blundered my way through.  After five minutes, it was all over and off to the garage I went.

At the garage, I was waiting for my husband to pick me up.  I had invented an elaborate story as to why I was late, but the mechanic didn’t seem bothered.  My husband has just arrived when my phone went.  Another private number.

“Hello Anna.  This is Tim from the Jeremy Vine Show on Radio 2.  I heard you on Five Live and I was wondering if you would like to appear on the show to talk about the Cancer Drugs Fund…”

Crikey.  We had a bit of a chat with my husband looking bewildered on what the hell was going on.   Arrangements were made.  He would phone on my landline at twelve and then I would address the nation.  I relayed all this to a mildly bemused husband and awaited the phone call.

When we got home, I tried to keep myself busy by pottering around.  But it was no good.  I was a ball of nervous energy.  Chill woman. Watch some naff telly.  I switched on and tried to settle down in front of GP’s: Behind Closed Doors.  It didn’t help.

11:57am.  Landline rings.  Deep breathe.  It’s my father in law.

“We’ve been trawling through Jeremy Kyle and you don’t seem to be on…”

Good grief.  Jeremy Vine on the radio NOT Jeremy Kyle on the telly.  At least not for now anyway.  Father in law apologies profusely and we hang up.

12:00pm. No phone call.  12:04pm.  Still no phone call.  12:07pm. This is getting ridiculous.  12:09pm. Phone finally rings.  It’s another Tim not the same one I spoke to earlier.  I’m told to listen to the programme and speak when prompted.  What follows next is a report that completely trashes the Cancer Drugs Fund.  It outlines how many nurses could have been employed with the money wasted on it and other such stats.  Blimey.  This may be tougher that I thought.  The Prof who helped to compile the report is interviewed.  He weights his answers carefully and is not too judgemental.  Then my moment comes.  I relay my story and I’m struck how quiet it is.  It feels like I’m talking to a void.  I want to pause and say hello just to make sure someone if there.  Jeremy asks a few annoying questions and states my age live to the nation.  He then lines up the Prof to respond to my story.  The Prof is a true gentleman and agrees with a lot of what I said.  I agree with the Prof too because he knows far more about this kind of stuff than me.  Also, when you are in my position, the more Profs on your side the better.  Jeremy sounds a bit disappointed that we are not tearing into each other.  But that’s the thing about cancer and illnesses in general.  There is nothing like the prospect of your untimely death that somehow forces you to find a compromise with any medical professional that happen to stumble across.

It’s a relationship that works two ways.  Medical bods also love meeting weird and complex patients.  My neighbour gave me some good advice regarding doctors.  She has lived with Non-Hodgkin’s Lymphoma for over twenty years.  She told me the key thing about doctors is that they are practising doctors.  This means that they are constantly learning as they go along. The medical profession is under a lot of pressure to keep up with the ever-changing face of medicine.  All the while the list of patients grows ever longer.  The doctor – patient relationship is a balancing act.  Communication and listening is key for the relationship to be positive.  Without it, we all end up as a set of statistics.