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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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.

The Football Mafia

The Sopranos must be nearly twenty years old, but it’s still fantastic. Due to a wash out Easter, we have started rewatching it. The last episode we watched saw Tony’s son, AJ, finally realising what his dad did for a living.

“Come on AJ,” said sister, Meadow, “why do you think we have so many uncles that we aren’t related to?”

That made me think. Hang on. I had quite a few uncles that I wasn’t related to either. Welcome my friends, to the football mafia.

To say my dad likes football is a gross understatement. It’s his life. Growing up, it dominated our lives. I remember going to a sleepover at one of my friend’s houses when I was about thirteen or fourteen. Her dad didn’t get out of bed until midday on the Sunday. By midday on a Sunday my dad would have already had a fried breakfast, played a football match, be showered and propping up the bar. That was a normal Sunday in our household.

What strikes a chord with my dad playing football and The Sopranos is the team around them. Tony’s right hand man is Silvo. He’s always well turned out in the best Italian suits. When Christopher, Tony’s nephew, steals a lorry containing Italian designer suits, Silv tries on a takes a couple for himself. There would always be someone like Silv propping up bar with dad. Always immaculately dressed hoping that the hockey girls were around.

Another one of Tony’s crew who I can relate to is Paulie. When Paulie is hunting down a hood, who works in a Starbucks, he laments the exploitation of Italian culture.

“First they destroy pizza, now coffee. Is nothing sacred?”

This reminds me of my dad’s mates lamenting about the state of English football, especially the mega bucks of the Premier League.

Meadow and Tony’s relationship in The Sopranos, early on anyway, reminds me a lot of my sister’s and my relationship with my dad. Lots of mickey taking and plenty of laughter. A big deal is made of banter nowadays but we, as a family, have been doing it for decades.

Football has changed completely since when my dad was playing. While I was in chemo, I read John Hartson’s autobiography. Hartson’s story is quite amazing. He played his football just when the big bucks started to roll into the Premier League. Like many of the players at the time, it went to his head. He became arrogant and aggressive on the pitch and developed a nasty gambling habit.

Then in 2009, he was diagnosed with testicular cancer. They later found that it spread to his brain. He describes being in A&E and vomiting up  black liquid. Never a good sign that. About a quarter of the book is narrated by his wife because he was in a coma for most of the time. Most people who have breast cancer have about six sessions of chemo. I had eighteen, which is quite a lot. Hartson had thirty five. That’s hardcore. Yet he’s still here. He’s a pundit now and you would never know.

I’m quite optimistic about English football. Now there seems to be a more professional edge. Gone is the steak and chips before a game culture that Hartson was probably the last of and in its place are spreadsheets analysing each players performance and how it can be improved. The players seem a lot more savvy and although they all aren’t angels, there seems to less sordid tales of wanton behaviour that was regular fodder for the tabloids.

The managers have a lot to do with it. When Arsene Wenger joined Arsenal, Hartson admits he knew his days were numbered. Wenger has been surpassed by managers such as Jurgen Klopp and Pep Guardiola who have taken this approach to the next level.

Although this has happened in the footballing world, I can’t really say if the same is true in organized crime. Technology is changing our world and you can’t help thinking that Tony Soprano’s days are numbered. But hey what ya gonna do about it?

The Beastie Boys

When you move in someone, however as much as you try to avoid it, you are subjected to that other person’s taste in music.  I met my husband in the Czech Republic.  We both went out there to teach English.  I shared a flat with my husband and our differing tastes in music was a cause of mild mickey taking.  I was 22 at the time and a complete Britpop devotee.  Blur, Pulp, Oasis, you name it.  If it had the word Britpop attached to it, I probably liked it. My husband couldn’t bear Britpop.  He liked his music a bit rough around the edges.  Mudhoney, Faith No More, Motorhead were more his bag, As I was the owner of the twin cassette stereo at the time, I had priority at first, my husband grimacing.  Over time we reached an arrangement where would have to listen to an albums worth of the other person’s music and then swap.  Occasionally my husband would overstep the mark like on the when he decided to play Slayer at volume 11 at 7am one Sunday morning, but overall, we obeyed these rules.

What was quite good about this was that every now and then I heard something in his music collection and he would hear something in mine, that we both liked.  This was true of The Beastie Boys.  I was a bit too young to fully appreciate The Beasties when they first landed.  They seemed to make good videos and had it in for Volkswagen drivers, but that aside, that was it.  My husband had two Beastie Boy albums, Paul’s Boutique and Ill Communication.  Both albums blew my mind.  Every now and then, a group comes around that completely embody where they are from.  The Beasties completely did that with New York.  They WERE New York.  Every song was a like a photo offering a snap shot of life in New York at the time.  Yes, they were rapping but the music they were rapping to changed constantly.  One minute it was big beats, the next bossa nova, then hard rock.  Everything you would hear if you walked down a street in Brooklyn at the time.

Fast forward to 2009 and we are debating whether to go and see the Beasties live.  I was about to book the tickets when the whole world tour was cancelled.  One of them had got cancer.  Bummer.  We shrugged it off and get on with our lives,

Then January 2011, I’m stuck in a traffic jam on the Nottingham ring road heading home after learning of my cancer diagnosis.  I’m on the phone to my sister.

She’s about to hang up when she says “Oh before I go, someone from the Beastie Boys has got the same cancer as you.  It might be worth looking up and see what he’s doing.”

I relay this to my husband.

“Cool…”

When we got home, I checked.  Adam Yauch aka MCA had indeed got salivary gland cancer.  He had undergone surgery and radiotherapy.  He was also following eastern medicine traditions and had gone on a vegan diet.  When I was diagnosed, he was very much alive.  For the first time I felt relief.

As time went by, I realised how rare my cancer was.  MCA was the only other person in the world I knew who had it.  I thought about contacting him.  I dismissed it.  What would a too cool for school New York rapper want to do with little old me in Nottingham?

Sadly, MCA died in 2012.  I remember people trying to avoid mentioning it to me because they knew how much faith I had in him still being on the planet.  I was gutted but I also got strength from it.  Strength to question my oncologists and doctors to find the right treatment for me.

When I was diagnosed it really annoyed me that cancer support was defined by the organ your cancer was in.  I have nothing against breast cancer support, prostate cancer support, bowel cancer support, lung cancer support and their ilk. But if cancer rears its ugly head in a weird place, it can be very isolating not only for the patient but also their family.  Thankfully the support networks have improved a lot since I was diagnosed seven years ago.  However, cancer is cancer.  It doesn’t matter where it is.  It’s still a bugger.

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.