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.

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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.

 

 

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.”

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.