A Tale of Two Hospital Appointments

 

The allotted hour had arrived.  I made sure that I was fully hydrated so that my veins were plump with blood ready for the taking.  I was called in by my oncologist and not a nurse.  So far, so good.

“So, Anna how can I help you?”

“Well it’s about the recommendations that the Christie advised?  Changing my treatment to an androgen based one?”

She looked at me blankly.

“You got the letter, right?”

She shook her head.  I sighed and gave her my copy to read.  It was an awkward five minutes.  The letter outlined things that she had probably never heard of.  I offered to leave the room and give her time to take it in.  She refused but left briefly to take a copy of it.  She was unsure.  Unsure of the funding for the androgen treatment.  She would need to contact the Christie for further information about that.  Mr Salivary Gland gave the impression that this wasn’t an issue, but she wasn’t so confident.  However, if it wasn’t an issue, she would be happy to oversee it. 

I left feeling really deflated.  I had built this appointment up and convinced myself that things would finally get going.  Instead I got a don’t call us, we’ll call you with a provisional appointment booked in three weeks’ time to discuss it further.  Humph.

Unbeknownst to me, at the same time this was happening, my seven-year-old nephew was wowing audiences in his end of year production, where he was playing Neil Armstrong.  Yes, that Neil Armstrong.  He of one small step and all that.  Best not to ask why.

This meant that my family, quite rightly, were absorbed by this performance and assumed that my appointment was just a procedural thing.  I sent them a text to which my Dad’s response of “Crikey” summed up the situation pretty well.  My sister, on the other hand, was quite positive.  We came up with a plan where I would email the Christie and explain the situation.  I would also say that I would be happy to have the treatment in Manchester if it was definitely a no go in Nottingham.

One appointment down, one to go.  The second one was with a speech therapist and a dietician.  My speech and swallowing have got a lot worse in recent weeks.  Although I can swallow liquids, when it comes to food, it backs up in my throat, causing me to gag.  This means that eating anything takes me twice as long as it normally does.  The upshot to this is that now I can fit into a pair of jeans I couldn’t three years ago, but it is draining and affecting my energy levels.

Rather embarrassingly I was slightly late for the appointment. However, this was shrugged away, and we got going.  Apparently, my soft palate isn’t functioning that well.  I was taught some simple exercises, such as holding my nose when I swallow and given a load of liquid supplements to fortify my diet. overall the appointment was really positive.  I left feeling a lot more in control of the situation.  Maybe my sister was right.  Things weren’t that bad after all.

 

 

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Shout! Shout! Let It All Out!

“It’s not fully closed is it?”  My husband was looking into my eyes but it wasn’t sweet nothings he was whispering.  “You need to go back to Eye Casualty.”

As I was descending the stairs down to Eye Casualty, someone prodded my shoulder.

“Ayup! Back again!”

It was one of the nurses who was on the ward when I was admitted.  I got the same reaction from the receptionist and the sister in Eye Casualty.  After a three hour wait with a prisoner, which caused a flutter of excitement, I was seen by a very efficient doctor.  He gave me gel as opposed to drops and told me to come back on Friday.  Double sigh.

Friday dawned and it seemed not better nor any worse.  It was the same receptionist as Monday.  We chatted a bit about the wait times.  I told her how amazed I thought the doctor was, taking time to assess me properly when he knew he had a room full of patients outside, champing at the bit.

“We take the same time as we always have done.  It’s just that the demand is so intense, we don’t have the staff nor the resources to shorten the wait times.”

It was quite refreshing to hear this.  I don’t think that is the case for all hospital departments nor patients.  This week a shocking report was released about people with learning difficulties.  The main finding was that this group of people’s life expectancy was thirty years less that the rest of the population.  Part of the reason was because the issues involved in the patients and their families had in communication.  There were some shocking case studies.  One poor lad died of constipation because he couldn’t communicate what was wrong.  Another more famous case was that of Colin Sparrowhawk.  He drowned in a bath because inconsistency of care.  Yes there was a report and recommendations but nothing gets done.  In fact it’s probably worse.

While I was in hospital, I ran out of water.  When the nurse eventually arrived I timidly asked for some, knowing how busy she was.

“You need to shout more loudly, duck.  You won’t get anything in this place if you don’t.”

She’s bang on.  You need to shout about for just about everything.  But what if you can’t shout?  What happens then?

Paul

I’ve always been a talker.  It got so bad in my teenage years that my Dad got one of his mates, who worked at BT, to send me a letter on headed paper supposedly from the CEO of BT, requesting that I limit the amount of time I spent on the phone.  I ignored it completely of course.  Although medically, the facial palsy has affected my left eye, the general sagginess is also pulling down the left side of my nose.  This means that my voice has suddenly developed a nasal tone.  It sounds like I am talking with my left nostril closed.  To me it sounds God awful.  However, I listened to myself delivering a mock speaking exam to one of my students and it didn’t sound that bad.

The two things I need to be able to do in my job is read and speak.  Reading is just about manageable with my one working eye.  It’s the speaking that’s the sticking point.  If I speak for a while, I get breathless.  My speech also turns to a mumble which is no good when you are supposed to be teaching English fluently and clearly.  I took a deep breathe and emailed my manager.  Her response was amazing.  We switched classes round, finished classes early and I’m still able to work, albeit in an administrative capacity. Part of the reason for this is because it’s exam season.  Spreadsheets are being formulated and completely.  Learners are doing mock after mock all to ensure that the data matches the targets that have been set for funding.  In one such mock, the learners had to complete half sentences.  One sentence began “I wish”. One learner wrote “” I wish I can go to Syria to build again my house in Homs.” You feel pretty inadequate pointing out the grammatical errors after a statement like that.

I feel that since the mild deterioration of my health, I have formed an unseen bond with some of my learners.  Some of them have been through such traumatic experiences that I could never comprehend.  Yet they survived.  In that way I can identify a lot more with them.  I’m a sort of survivor too.  They have been also fantastic about the fact that some of their much-needed classes are finishing early.  They’ve not said so but there is a silent acknowledgement that it is for the best.

It’s not easy.  We watched the film Paul and there was a scene that had me in tears.  Paul is a comedy about two Brits, Simon Pegg and Nick Frost, who are on an American road trip around Area 51 when they encounter and have fun and frivolity with a real alien called Paul.  Whilst on their mission to return Paul to his mothership, they meet Kirsten Wiig who has a lazy left eye.  Paul puts his hand on the left side of her face and the lazy eye magically disappears.  I long for a Paul.  A Paul to put his hand to my face and put my nerve back, take away the ulcer and make me, me again.  I have accepted that my face will never look like how it did before.  But that never makes it easy.

We Are All Individuals

“I’ve seen you, before haven’t I?” asked the friendly Scotsman. I smiled.  In any other circumstance I would be flattered.  On this occasion he was leading me down a brightly lit corridor and into a broom cupboard.  There he would be giving me a local anaesthetic, so I could have my left shut for good.  Finally.

The anaesthetic was administered, and Alana arrived.  She would be performing the procedure.  We were on first name terms now, which in a hospital setting, is not necessarily a good thing.  The surgery was performed without a hitch.  After a complimentary cup of tea, biscuits, an epic wait in pharmacy and a penalty tram fare, I was home.  Phew.

After a fantastic week in Devon I was back on my home turf, the eye outpatient clinic.  It was more packed than usual.  Maybe the raised chocolate consumption over Easter led to more eye issues?  Who knows? Although my appointment was for 1:30pm, I was called through at 2:15pm, which meant I could watch Doctors, which is a guilty pleasure of mine.  So, I arrived in the examining room in quite a good mood.

However, the doctor wasn’t Alana.  It was a tired looking registrar who clearly hadn’t read my notes.  An interrogation ensued, and it was quite clear that I wasn’t giving the right answers.  It revolved the medication I was on which I had forgotten to bring with me.  I’d be damned if I could remember the names of the stupid things.  I just put them in my eye.  End of.  She wasn’t happy.  I was spat out and told to wait for when Alans was next free.

I sat in the waiting room feeling like a right numbskull.  I was easily the youngest in there.  How would my older compadres cope in such an interrogation?  Then I twigged it.  I was at fault because I was individual.  My older compadres fitted neatly into their boxes for glaucoma, cataracts, you name it.  They could be sorted.  Me?  Well I was way too individual for that.

I smiled and thought of one of my favourite films, Life of Brian.  Brian, somehow becomes seen as The Messiah.  In one scene, he opens his curtains, walks onto his balcony, fully naked, only to be greeted by a mob of people shouting “Messiah! Messiah!” Once he has put his clothes on, Brian confronts them telling them that they are all individuals and should believe what they want to believe and not follow him.  The crowd chant back what he says.  His message gets lost and the crowd begin following him wherever he goes.

I felt a bit like Brian with that doctor.  I was trying to tell the doctor my individual condition.  She was repeating it back to me but not really listening.  She was trying to find a nice comfortable box to put me in so that she would know what to do.

It’s very easy to label and box people.  It happens all the time and our tick box culture does not help.  Listening is such a powerful skill and is rarely used.  Patients aren’t listened to.  Parents aren’t listened to.  Children and teenagers aren’t listened to.  Doctors and nurses aren’t listened to.  Sadly, the list gets ever longer.

I finally saw Alana.  She was happy.  My ulcer was smaller, and she prescribed some weaker antibiotics.  I also a week off from going to the eye clinic.  Things were looking up.

Well Eye Be Damned

“Oh God! Why do the ALWAYS show boring drama programmes in here?” lamented the Kevin the teenager standing behind me in the queue at for the reception at the eye clinic.  His mum mumbled something to him.  I was about to turn around and extol the virtues of Doctors when it was my turn to do my pre-flight checks.  One I had finished, Kevin had disappeared.

After my eye check, I was led through to the main waiting area.  As always it was packed.  Whole families seemed to be there to find out about Nana’s or Grandad’s cataract or glaucoma.  On the goggle-box was some weird Australian drama set in the 1960’s.  It reminded me of those Australian dramas in the late 80’s like The Sullivan’s and Sons and Daughters were more attention was paid to write a catchy theme tune rather than on any plot.

I was trying to get my head around about what was going on, when a doctor I had never seen before, called me through.  I walked in the room and sat down.  He sat by the computer and started to read my notes.  The door was still wide open.  I got up and shut it.  I had a bad feeling about this.  We sat in silence as he spent a good five minutes reading my notes.  Five minutes is a long time to be sat in complete silence.  He examined my eye.  It was clear he wasn’t happy.  He asked me who I had seen in the eye clinic.  I listed practically half the doctors in the eye clinic.  He frowned, He informed me that the doctor who had closed my eye was in clinic today so maybe it would be better if I saw her.  Pass the buck.  Nice.

Back to the waiting room I returned.  It was now that daytime stalwart Escape to the Country.  The budget was £1.5 million.  Completely realistic to the patients in the waiting room at the eye clinic.  I was midway through being shown a six-bed detached house in Cambridgeshire, complete with indoor and outdoor swimming pool, when I was called through, I have a good relationship with this doc.  It’s very professional and she is very efficient in what she does.  She wasn’t happy.  The ulcer behind the part of my eye that was sewn up, had gone.  However, in the part that was exposed, the ulcer was worse.  She asked if I was OK if the Prof had a look.

Prof 2 came in.  He’s very calm and serene, just what you need in someone who is fiddling with your eye.  He had a gander and spoke to medical gobbledegook to my doctor.  From my viewings of various medical dramas, I understood snippets.  Samples had to be taken for cultures.  He left, and the doctor checked if I knew what was going to happen.  Vaguely.  She clarified by saying that they would be taking samples of the ulcer for testing.  They were also going to give me much stronger antibiotics.  I would come back in a weeks’ time and if I hadn’t got better, I would be admitted to have antibiotics intravenously.  Crikey.  We had gone up a notch.

After the samples were taken and I had waited for an hour in pharmacy for the antibiotics, I arrived home to a letter from Prof 1 at the Marsden.  He had written to me, my GP and my oncologist to let them know what was happening.  He said that it was a pleasure to see me.  Could I use that as a reference on my CV, I wondered?  He also said the R-word.  He said the I was “in remission on maintenance Herceptin”.  Yes, I’ll take that.

Eye Don’t Believe It

So, it was all set up.  Eye appointment at nine o’clock on Wednesday morning.  Cover for my classes was in place and sorted.  Then the phone rang.  I missed the call but there was a voicemail.  It was from a nameless woman who was Professor E’s secretary.  Could I come in at three thirty instead of nine to see the Professor?  Oh goody!  I had been bumped up.

I arrived at the eye clinic feeling a bit washed out.  I had woken up with a stomach bug although the worst of it had passed by the afternoon.  I performed all the pre-flight checks and eye tests without fuss and sat awaiting my date with my second professor.

My first professor is at the Marsden.  He’s an outgoing chap who is charm personified.  His confidence is highly contagious.  You leave an appointment with him feeling like you could take on the world.  What would this Prof be like?

I was called in and met a quiet, methodical man who was with an eager registrar who seemed keen to please.  We went about all the checks.  He gave nothing away, yet you still felt that confidence. He may not have been as brash as my Marsden Prof, but it was there.

There was a slight pause.

“I’m afraid Mrs Read you now have an ulcer in your eye.  But there is no infection.”

The registrar and I looked at each other.

“I have a proposal on how this could be remedied.  When babies are born, they are born in a sack…”

I looked nervously at the registrar, he nodded as if to say, “stay with him on this…”

“What we now do is take this sack and dry freeze it.  I can use a fragment of one of these sacks to become a membrane over your eye.  This will stop further ulcers forming.  Once we have completed that, you can have further surgery to put gold weights in you left upper eyelid to weight that down, so you can blink properly.  I want you to come back in three weeks to discuss this further.  Any questions?”

I was taken aback.  So much to compute.  Baby sacks over my eye? Gold weights? I merrily nodded my consent and left to confirm the follow up.

Then it got worse.  I couldn’t read.  I didn’t realise how much I relied on reading in everyday life.  My job revolved around reading.  Reading students’ work, reading text books, reading handouts.  Sadly, I still could read emails.  Bit annoying that.

So back to eye casualty it was, and boy was it busy.  Only one doctor on and a psychotic episode in reception.  Yes, it was quite bad.  But there was a chink of light.  While waiting, I ended up talking to a woman who was there with her daughter and two-year-old granddaughter.  The two-year-old was fabulous.  She was speaking in the way two-year olds do, by repeating phrases she had heard from those around her.  “Nana, put that down! Good girl. Don’t do that!” it gave a weird insight into what her family life was like and it all sounded good.

Speaking to Nana, the two year old had had problems with conjunctivas.  They were back in to see if the medication had worked.  Of course, the reason why I was there cropped up.  I gave an edited version.  They took it quite well.  But then Nana hit me with a story that was more remarkable than mine.

Her eldest daughter had been born with no soft spot.  This meant that her skull was formed and didn’t have the space for the brain to grow.  As a result, her daughter as a baby, had to have her skull opened from ear to ear to create this space.  Her daughter was perfectly fine afterwards and has just had a daughter herself.  However, Nana had to got in public with a baby that had a huge, angry scar across the top of her head.

“I would get looks, even comments. What has she done to that poor baby? But you know what?  I couldn’t have cared less.  Fear.  That’s what fuels them all.  They’re all scared in case they catch it.  Well, boo to them.  You got out with your eye taped up and drool as much as you like, duck.  You’re fabulous whoever you are.”

Her granddaughter was seen, and the infection had cleared up.  I was seen and given antibiotics. We joked we hoped we never saw each other again.  But the morning proved that there are gems lurking in those hospital waiting rooms.

Reality Check

The day had arrived.  No cancellation had come through.  Game on.  It was mad Tuesday.  I had an appointment in oncology at nine at City Hospital.  Then I had the big one at the QMC at half eleven.  Two appointments at two different hospitals in the same morning.  Could it be done?  You better believe it!

Oncology is a very strange and stressful place.  It’s hard to say which waiting room is worse, oncology or chemotherapy.  For me oncology just edges it.  The main reason is the awful anticipation that exists there.  The patients in oncology are waiting for scan results, treatment updates and all many of the most stressful things that you encounter when you are having treatment for cancer.  Sometimes they will hear what they want to hear. Sometimes it’s the worst news you could possibly want to hear.  In the waiting room you have no idea which one it’ll be.

Fortunately for me, my appointment there was just a check up to make sure I was still alive.  I was called through and saw a registrar.  He set up the scans that I have every six months to check that everything was tickety boo. I breezed out with an appointment to go back there in three months’ time.

Now time for the big one.  I was slightly nervous entering the ENT reception given my shenanigans the previous week, yet no one battered an eyelid.  After about fifteen minutes I was called through to sit outside Mr Q’s door alongside an elderly couple. They were called in as soon as I arrived.  This looked promising as I was next on the list.  As I sat down, an elderly man came hurrying down the corridor.

“Dad! For goodness sake! It’s THIS clinic here!” shouted a woman, who I assumed was his daughter.

“Nearly made my escape…” said the man giving me a wink.

“You can’t leave these ninety six year olds anywhere!” said the woman directing her dad to the clinic next door.

Once they left another elderly couple came and sat next to me.  They were obviously next in the queue after me.  The man’s, who must have been in his late seventies or early eighties, mouth was identical to mine.  We both did a bit of a double take.

“You don’t mind if I do my back exercises?  It’s just I can feel it all seizing up.” said his wife.

I said I had no problem and we discussed various lower back exercises, what worked and what didn’t.  I went to put some rubbish in the nearest bin and on my return, I noticed something.  The man had no left ear.  So not only had he had the same surgery as me, he also had to have his left ear removed.

It was a bit of a wake-up call   Surely if anyone who needed any facial reconstruction it was this man? Yes, I was younger and could probably recover quicker, but this man had no ear!

I was called through, and my appointment was quite quick.  Mr Q had seen that I had been to eye casualty.  He said that he wanted to get my eye sorted first, before he could do my mouth.  I had received an appointment to go to the eye clinic in March to discuss what was happening then.  So, I made an appointment to go back to ENT in six months’ time. Hopefully my eye should be sorted then.

I left feeling not too bad.  It wasn’t great news but I’m willing to wait as clearly there are people who need surgery far more than me.  It’s amazing that we are living longer than ever before.  However rather than be celebrated, this is a problem.  Our health service needs to adapt to accommodate the changing needs to its population.  Staff shortages, lack of beds and poor communication are making existing problems even worse.  This requires long term thinking at a time when everyone wants to make a buck and then get out quick.  This situation doesn’t show any sign of changing while we carry on constantly putting out fires rather than stop the fire from starting in the first place.