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?

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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.

Made in Chelsea

Another year had rolled by. It was time for my yearly check in with the Prof at the Royal Marsden.  The Royal Marsden has hospitals at two sites.  The larger of the hospitals is about fifteen miles from London in Sutton.  The other hospital, where the Prof lives is in Chelsea in central London.

Chelsea is famous for two things.  Their all-conquering Premier League football team and the TV show Made in Chelsea.  I have a confession.  I have never seen Made in Chelsea.  From what I can gather it’s a scripted reality programme documenting the lives of various rich, young people who live in Chelsea.  These people have weird names like Binky and Minnie and even more bonkers love lives.  I try to avoid programmes like this.  It’s not from a snobby point of view.  It’s because I know I will get completely hooked on Binky’s latest palaver that I will forget to get on with my own life.

I arrived at the Marsden and went to check in.  The waiting room at the Marsden is by far the worse waiting I have been in.  And I have been in a lot of waiting rooms.  Of course, it was packed with everyone eyeing everyone else suspiciously.  I went through the pre-flight checks with the receptionist after which she told me to go to small waiting room.

“Small waiting room?”

“Yes.  It’s just down the corridor, on the left.”

Down the corridor I went becoming more anxious the further I went.  Finally, there was an open door.

“Urm… is this the small waiting room?”

I was assured it was and sat down.  I looked at my fellow compadres and knew I was in the right place.  Opposite me was a man, wearing a black eye patch on his right eye, with his wife.  Next to them was another man with a droopy mouth like mine.  Finally, next to me was another couple with another man with an eye patch.  Yes, these were my people.

We sat there flicking through old OK magazines when the man opposite gasped.  The Prof appeared and quickly went into the room opposite accompanied by two flustered looking registrars.  No minions today.  We were all going to get the real deal.

After a while, the woman next to me started huffing.  She was reading an OK magazine about Cheryl Cole/Fernandez Versini/ Tweedy and Liam One Direction’s marvellous life.  It obviously wasn’t much cop.  She began whispering angrily at her husband.  He just nodded and folded his arms.

A nurse appeared in the doorway.

“Anna Read?”

The daggered looks I got was unreal.  This had broken all waiting room protocol.  I was last in and first out! Outrageous!  I followed the nurse out from the glares and she led to me another room.

“Professor H will see you shortly.”

I sat and started fiddling with my phone.  It had got to fifteen minutes and still no sign.  I What’s App-ed my family.  Should I go and say something? NO came the reply from my sister, who worked in the NHS.  That is a big no-no.  It would only delay them further as they were probably reading my notes.  I sighed and began to read the kilograms to imperial conversion weight chart on the wall.

After another ten minutes, the Prof rushed in with his two minions.  The two minions turned out to be two oncologists from Spain.  They seemed genuinely interested in my case.  We had a chat, and all was good.

“In my opinion I think if it aint broke don’t fix it eh?” said the Prof looking at the two bewildered medics.

“What I mean is that if the Herceptin is working, it would be madness to stop it.  You are very lucky Anna.  If you presented to me now, there is no way you would get the funding for this.”

I was a bit taken aback by this.  You like to think that life in five years would be better than life now.  When it comes to health care, it’s more nuanced.  Sure, there have been huge advances.  People are living longer than before.  The changes in cancer treatment and the research in finding new drugs and other medication is staggering.  This is all amazing but it’s the distribution of these treatments where its going backwards.  Who is responsible for that? Is it the state or the individual?  I know the Prof would like to treat as many people as he could, whether they be a rich, hedge fund manager or an elderly former miner.  All should be equal as far as he is concerned.  But pure economics doesn’t work like that.  It’s all about supply and demand.  Not many people have an HER2 positive tumour in their head like me so there isn’t the funding.  This model fails to acknowledge that it’s because of the treatment, I have been a fully functional member of society for the last five years.  I have also been paying taxes for that long too.  The brutal truth, is if it wasn’t for the treatment, I would be dead.

The Prof could tell I was looking anxious.

“Look.  You are doing really well.  I don’t think you need to make another appointment to see me next year.  Just call my secretary as and when you need to see me.”

He smiled, bid farewell and left the room.  Weirdly this is a good thing.  This means that he believes that the treatment that I’m on will be fine at least for another year.  I smiled as I made my way to the V&A for my yearly mooch around before my train back to Nottingham.  Maybe things weren’t that bad after all.

 

 

Eye we go again…

The following week I was back.  I was running low on antibiotics.  As I checked into eye casualty, the cheery nurse who saw me last time walked past.

“Good to see you again, Anna!”

It’s never good, to be on first name terms with the triage nurse, no matter how lovely she is.  After about an hour I was called through.  The doctor was obviously a bit intimidated with my brush with the professor.  He gave me a prescription for more antibiotics and the professor’s secretary phone number.  I was to call her and chase up my appointment with him.  I needed to see him pronto.

This is the thing that shocks people the first time they encounter healthcare for the first time.  The emphasis is firmly on you to chase up appointments, know what medication you are on, when your last scan was and the result of it and a whole myriad of information about you.  It becomes a bit of a test.  In every appointment there is always one bit of information that I have forgotten.  It’s when you see the doctor roll their eyes at this that it hurts a little bit.  I’m not bothered though.  In fact I feel a little flattered that the doctors have shared me a little into their secret world.  It’s the people like the woman I saw in eye casualty walking with two canes.  She was with her son, who was about my age and with obvious learning difficulties. They both needed to see doctors in eye casualty.  It’s those vulnerable people that you worry if they can keep track on what is going on.

The next day, I tried the secretary.  Voicemail.  I left a really long annoying voice mail.  If I was the secretary and heard the message I left, there would be no way I would call back that crazy woman.  I needed another plan.  The next day I decided to call every fifteen minutes until someone picked up.  After the fourth phone call, she picked up.  I told the sorry story in complete grovelling mode.  It worked.  The prof had a slot in his Wednesday clinic.  I was squeezed in.

On Wednesday I went prepared.  The last time I had seen him, he had been an hour late.  So I was armed with a Costa latte, a chocolate cookie and a magazine.  I was in for the long haul.  I had just made myself comfortable when I was called through, ten minutes before my appointment time.  This was most irregular.  It wasn’t the prof, but a doctor I had seen before during my forays into eye casualty.  She looked in my eye.  It wasn’t good.  My eye needed to be closed permanently to clear the ulcer.  This needed to be done asap or I could lose my left eye.  She said she would talk to the prof to admit me for day surgery as soon as there was space.

On the way home I missed a call.  The voicemail left told me that I was to have this surgery the following Monday.  Crikey.  Fasten your seat belts people.

Monday rolled around.  Over the weekend I had contracted an awful cold/flu/cough virus thing.  Although I didn’t have temperature, I had a hacking cough and no appetite whatsoever.  What would happen?  Would they turn me away?  I turned up at the Eye Day Surgery Clinic bang on 7:30am, like everyone else who need day eye surgery that day.  What was clear was that I was by far, the youngest in the waiting room.  Because of this, I was eyed with suspicion.  I was called through by the nurse.  She went through what was happening and reassured me that my cold/flu/cough thing wouldn’t affect anything in the slightest.  As she showed me back to the waiting room, we saw the doctor I had seen in the eye clinic.  She would be performing the surgery not the prof.

“Because you are the youngest person, I’ll be doing you last this morning.  So you can go, have breakfast and come back here at 10:30am.”

Grateful for my slight reprise, I skipped out the clinic onto the joys of Costa.  I checked the time.  It was 8:30am.  Two hours to kill in the hospital.  What to do?

After having a very slow latte and micro reading the day’s paper, I slowly ventured back to the clinic.  They were relatively happy that I had come back.  I saw another nurse and signed the consent form.

“Would you like to go the waiting room with the TV in?”

I said I would.  When we got there, there was indeed a TV showing the Winter Olympics, but also a stressed looking man.  Turned out unlike me, he hadn’t been given a freedom pass and had been stuck in this tiny room, not knowing what was happening.  He was also younger than me.  I told him what I had been told about my age and he rolled his eyes.

“Why couldn’t they have told me that?  That would have been better than hanging around here for the last three hours.”

And that my friends is the problem.  Communication.  If we, as patients are told what is happening, stress levels are reduced.  This poor man had been too scared to even to go to the loo for fear that he would miss having his name called.  I gave him permission to finally go and once he had been, we both chilled out to watch the bobsleigh.

I can’t say how long I waited in that tiny room but eventually, I was called through.  The surgery didn’t take that long.  About half an hour.  But there was something missing.  It was only afterwards, when I was having my post op complimentary cup of tea and custard cream (thank you UK taxpayer) that I realised what it was.  When I had had similar surgery last year, the radio had been playing in the operating theatre.  The song that was playing was Rod Stewart “If You Think I’m Sexy…”, quite possibly the most inappropriate song for such an occasion.  Yet this is what was missing.  There was no distraction.  Just medical gobbledigook between the doctor and her med student.

“You look a bit sad.”  said the nurse, as she handed over my drugs and follow up appointment.

“I’m fine.  Just glad it’s over.”

Red Eye Kitchen Nightmare

It all began last Wednesday.  I was running late for work.  I jogged the dog round the block for her morning toileting.  When I got back, my husband was long gone so I grabbed my bag and ran.  It wasn’t until lunchtime that I noticed.  I had left the eye ointment that I have to apply to my left eye every two hours, on the kitchen worktop, next to the dog lead.  Still, I wasn’t in any pain, so maybe I got away with it.

The next day it was clear that I hadn’t.  I went into ointment overdrive, trying to overcompensate for the mistake I had made.  It was too late.  The damage had been done.  With a heavy heart I called eye casualty.  Just keep applying the ointment and if it gets worse, pop in said the nurse.  No one ever pops into casualty.

My eye got progressively worse during the week.  We tried taping it up at night, applying ointment every hour to no avail.  Casualty beckoned.  On my way to the hospital I began to listen to Desert Island Discs on Radio 4.  The person who was shipwrecked was Angela Hartnett, a top chef who was a protégé of Gordon Ramsey.  Kirsty Young was trying to get her to comment on why they were few top chefs that were female.  Angela was quite guarded about this but said the situation was improving.  Her time with Ramsey sounded brutal.  Although she had kind words for the man himself, the hours were a killer.  She worked from 6:30am until midnight for six days a week with half an hour for lunch if she was lucky.  The rest of the chefs took bets on how long she would last.  The top one was three weeks.  She stayed for a year.  So much energy for a plate of food.

There was a long queue for the reception when I got to eye casualty.  I wasn’t feeling optimistic.  After about half an hour I was called through by a glamourous looking nurse.  We did the usual pre-flight checks.  To my surprise she knew all my medical history. Yes, she knew of the facial nerve surgery and the surgery in October.  She was also horrified I was expected to apply the ointment to my eye every two hours.  This was a first.

She sent me round to have photos taken of my eye and led me to another waiting room.  The TV was showing the US version Ramsey Kitchen Nightmares.  My second encounter with Mr Ramsey that morning.  His target was a seafood restaurant in New Orleans owned by two warring brothers, each blaming the other for its woes.  Ramsey was doing his usual, but I noticed something.  He wasn’t doing that much.  He was a rope provider and getting those who ran the restaurant to hang themselves on that rope.  They were just about to close the kitchen down, when I was called through for my pics to be taken.

Once they were done, it was back to eye casualty where I rather enthusiastically announced my arrival to the receptionist. I took my seat to await the doctor’s verdict.  After fifteen minutes I was called through to see a consultant.  She was surprised to learn that my next outpatient appointment wasn’t until March and bumped me up to go in next Wednesday.  She also gave good advice on how to tape up my eye and apply the ointment more effectively.  In her opinion, the October op hadn’t worked, and my eye would needed to be stitched up again.  But my consultant in eye outpatients would have the final call on that.  I wasn’t too downhearted by this.  I just wanted not to keep getting red eyes.

When I left, I checked my watch.  I had been done and dusted in less than two hours.  The NHS can work, if you see the right people who know how to solve your medical issue.  The problem is that we are losing these right people.  The fact that they are usually working the hours that Gordon Ramsey and co worked at their peak, may have something to do with it.

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.

 

Nurses

Nurses. Try as you might, you can’t avoid them.  Nurses come in many shapes and forms.  They are sometimes portrayed as modern-day angels.  Gallantly working their twelve hours shifts and doing all the work while the doctors stumble around in their incompetence.  Or they are the devil incarnate.  Too big for their boots, neglecting their patients by allowing them to starve to death.

The truth, as with everything, is somewhere in between.  The vast majority of nurses are fantastic.  They are not all angels because they are human.  Being human is hard, especially when you have to deal with other humans and their expectations.   Add to that illness and the possible risk of death, and you have a volcano waiting to erupt.

Every three weeks a nurse comes to my house.  She (I’ve yet to have a he) gives me an injection for five minutes.  Then she, for funding requirements (?), has to hang around for two hours in case I have a reaction to the injection.  It’s slightly annoying for both of us.  I can’t do anything as I’m being monitored.  The nurse can’t do anything as she has to monitor me.

I’ve had a fair few nurses in the four years that I started the injections.  They have come from all sorts of backgrounds.  One nurse’s husband was helping to develop the world’s fastest car.  Like you do.  Another ran a charity that helped former servicemen who had just come off duty, wrestle with their demons by organising angling courses for them.  Another is an accomplished jeweller in her free time.  They are a very interesting bunch.  They all have a fondness for property programmes like Home Under the Hammer.  But not Jeremy Vile.  I’ve yet to meet a nurse who likes him.

What they also have in common is a down to earth, common sense approach to a crisis that may occur.  Not many crises have occurred in the four years.  However, one time we had builders in to renovate our bathroom.  About half an hour before the nurse was due to arrive, (always bang on time, unlike doctors) one of them cut himself badly while removing some tiles.  There was blood everywhere and the builder, who was about eighteen, went pale.  The nurse arrived and took control of everything.  After he was bandaged up and on the way to A&E with his mum, completely awestruck I asked her:

“How can you keep so calm?”

She just shrugged.

“All in a day’s work…”

And with a swish of her cape, was gone.