Wimbledon

Wimbledon has always been special to our family.  I used to queue up as a teenager on its opening day to get an outside court ticket and have a gawp.  Then in 2012, I was lucky enough to be a Gamesmaker there and had a brief experience of seeing how it all operated behind the scenes.  Every year my parents, my sister and I enter the public ballot for tickets.  We are usually lucky and normally one of us gets something. This year my sister hit the jackpot.  She got a pair of Centre Court tickets, to the left of the umpire on the first Friday of the first week.  Then my appointment with Mr Salivary Gland came through.  When was it? Yep. The very same day as the Wimbledon tickets.  Talk about Sod’s Law.

A decision had to be made.  So, after a lot of faffing, my Dad and sister would come up to Manchester.  My mum would go to Wimbledon with her tennis pal Joan, as a bit of distraction therapy. Premier Inns were booked, and alarm clocks set for an early start through the Peak District.  The allotted day arrived, and we convened in the pub next to the Premier Inn in West Didsbury to discuss our plan of action.

The Christie is set in a nice suburb of Manchester.  It’s quite hidden away as we discovered while walking amongst the bins, trying to find the main entrance.  When we finally did, we walked down the longest corridor ever to Department No 1.  There we were sent upstairs to a white, bright reception area with comfy chairs.  Soon we were called through by a cheery nurse called Sandra.  Sandra was great and said it was a good thing I had a support crew with me.  She took my temperature and blood pressure with a musical blood pressure machine.  She also took my weight and height.  She left, and the wait began.

First to come in was Mr Salivary Glands registrar who was also a GP.  He took the most detailed history of my cancer that I have ever given.  It’s such a long story that I’ve grown used to editing it.  Between the four of us, we gave him a comprehensive tale of woe. He disappeared to report it all to Mr Salivary Gland.

More waiting. And waiting. My Dad and my husband had just started debating what rugby position the GP/registrar might pay in, when in swept Mr Salivary Gland.  He was young and very dapper.  He spoke quickly and concisely.  Even though he was talking about very technical issues, he worded it in such a way that we could all follow what was going on.

There were going to perform two tests on my tumour.  In the first one they would send a sample of the tumour to Texas to test for certain genetic markers.  If that came up trumps, there was a targeted drug I could take.  However, the success rate of this was less than 10%.  This was the Golden Ticket test.

The second test would take place in Manchester.  As this was looking for more markers, the success rate of this was higher.  The drug was a little less targeted but could do the job.  Also, there was a chance that I could have the treatment in Nottingham rather than Manchester.

If neither test proved fruitful, there was a generic immunotherapy drug that I could have in Manchester.  This was the suck and see option.  However, Mr Salivary Gland seemed to think that the Manchester test option might be the one that would come up trumps.

The problem with genetic tests is that they take time.  Both tests would take six weeks for the results to come through.  We told him about the problems I was having eating and with my right eye, with the lid closing.  He listened carefully and, on the hoof, came up with a solution.

As well as testing HER2 positive, my tumour was also receptive to androgens that are used in the treatment of prostate cancer.  He would write to Nottingham and ask them to switch my treatment asap to androgens rather than Herceptin.  He didn’t seem to think that this would be an issue and if it was, chemo was another option.  I sighed.  He smiled.  He said he would strongly urge them to use the androgens and not chemo.  I smiled.

I was an awful lot to take in but weirdly we all did.  It was only when I was relaying this conversation to my husband’s mate, Dan, that I realised how much as a family, we had all learnt about cancer treatments.

Appointments were made.  I would come back in three months’ time by when, we would know the results of the tests and how the androgen therapy was working.  All I had to do now was make an appointment with my oncologist for a week on Tuesday to sort out the switch in treatment, that should be simple enough shouldn’t it?

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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?

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.