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 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.

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.


Dirk Gently’s Holistic Detective Agency

Wednesday morning started normally enough.  I contracted a weird stomach bug over the Christmas limbo period between Christmas and New Year.  My body was sending signals that I was going to be sick.  Once I got to the bathroom, these symptoms would subside into either a hot flush or a cold shiver.  All very odd.  The bug now progressed so now at five am on Wednesday morning, I was awoken by a horrendous spat of heart burn.  Awake and not feeling too great, I pressed in my headphones and switched on my portable digital radio.

It was tuned to Five Live.  I quite like Five Live.  I find that its shouty tone keeps me at the right level of consciousness in the morning while other radio stations tend to send me to sleep.  As the financial programme gave way to the breakfast show, the main story of the day got me interested.  Please get in contact if you have had any experience of your hospital outpatient appointment being cancelled.  Well that was me alright.  I was due to see Mr Q on 12th December.  A few days before I got a letter cancelling it and asking me to come on 19th December.  Then the Friday before the 19th, another letter came cancelling that and asking me to come on 9th January.  This had been a nightmare to coordinate work wise.

However, these were only appointments, not actual operations.  Before this appeal I had heard a terrible story of a guy having his hip operation cancelled twice.  He was obviously in a lot of pain.  Yet it was the nurse afterwards who said that it was the cancellation of out patients’ appointments that would create even more problems for the NHS over the winter period.

Partly inspired by her, I texted in briefly saying my story.  About a minute later I got a call from a harassed researcher asking if I could speak, live on the radio, in five minutes.  OK I guess.  Before me spoke a very eloquent junior doctor.  He summed up perfectly in far better language than I ever could, the problems with the NHS this winter.  I was being lined up as a disgruntled patient to counter his agreement.  I took a deep breathe, highlighted my story and agreed with the junior doctor.  At the end I had changed from being disgruntled to being reasonable.  You can’t say better than that!  So off I went to walk the dog.

When I returned, I was treated to an unusual sight.  My husband was being nice to someone on the phone.  My husband is usually nice to people on the phone who he knows.  However, if you are a stranger, be afraid.  Be very afraid.  The person he was being nice to was someone called Fiona from BBC News at One.  He passed me over. She was calling to see if I wouldn’t mind doing a piece to camera about my situation.  I looked around.  My husband was still in his dressing gown and about to start a fry up.  The night before, he had decided to complete dismantle his wardrobe and reorganise his clothing.  The house was covered in his clothes and soon would be smelling of fried food.  I said to Fiona it would be better if we could do the story in Nottingham rather than at my house.  She said that could work as she could use a crew from BBC Nottingham.  We chatted a bit more and she said she would call back to confirm a location.

True to her word, about half an hour later, she called back and told me to go to BBC Nottingham and ask for Miles at reception.  BBC Nottingham is near a huge traffic island in Nottingham.  When I arrived, the receptionist was expecting me and buzzed Miles.  Miles was a cheery chap and said that he had spoken to the Premier Inn over the road.  The plan was that I could have a coffee there and we would have a chat.  So off we set with Boris the cameraman in tow to the Premier Inn.

The Premier Inn had a good outlook.  It’s located next to the canal in Nottingham.  The only problem Boris had was trying to position the camera so you couldn’t see any graffiti.  The actual interview lasted about twenty minutes.  They quickly scootered off telling that it would be on the regional news programme, East Midlands Today, and could be picked up nationally, but there was no guarantee.

I got home, had some lunch and tuned in.  The headline story was about the winter pressures on the NHS. The first item and there was me, supping my coffee at the Premier Inn, talking about my story. Un-bel-iev-able!  The reason I think they chose it was visually, you can tell I need an operation.  Also, I’m young.  It’s a sad fact that I think if I was an old lady awaiting a hip op, I don’t think they would have picked it up.  There was a longer piece on East Midlands Today about it and that was that.

Then the phone rang.  It was BBC Nottingham.  Could I come in and be interviewed for Drive Time?  I made my way in and said my piece.  On the drive back, I nearly crashed my car when I heard myself again talking on Radio 4 about my situation.  This was getting ridiculous.

When I got home, my husband was catching up on Dirk Gently’s Holistic Detective Agency.  For the uninitiated, Dirk Gently is the creation of writing genius Douglas Adams.  To explain what happens is near impossible.  You just have to watch it, end of.  I love Douglas Adams.  The Hitchhiker’s Guide to the Galaxy is a work of genius.  Its authoritative tone makes the implausible, plausible.  Of course, Volgon poetry is the worst in the galaxy and Slartibartfast designed the Norwegian coastline.  How could you not know that?

Dirk Gently goes way further.  My mum bought me the book when I was about twelve and it defeated me.  The Beeb made a TV series of it.  It worked quite well.  Dirk was an annoying tramp like character who lived in his car always with some Brie in his pocket for emergencies.  In the American version on Netflix, he’s a lot cleaner cut, thankfully still British and strangely asexual unlike the British Dirk who is a right sleaze.

The plot is complicated to put it mildly.  It involves time travel, characters changing to animals and vice versa.  Keep you eye on that kitten is all I’m saying.  It seemed a completely appropriate programme to get lost in after the bonkers day I had had.  It had felt like I had stepped through a wormhole into another universe of deadlines, the search of a human angle and I’m not sure it was a world I liked.

By Friday the eye of the news had moved.  The NHS didn’t get a look in.  An awful rapist had been released on parole, Donald Trump was battling away with Steve Bannon and even worse, the government was threatening to put 25p on take away coffee cups.  The winter crisis was now on the back burner.  For now, anyway….

Old Red Eye Is Back

It started on the Sunday.  There was no denying the slight pinkish tinge to my left eye.  I ignored it.  It was bound to be something to do with the cold snap.  Icy winds or something like that.  By Tuesday, the pink had turned to an angry red.  I couldn’t deny it.  It was getting worse. I followed the herd and asked Mr Google.  Mr Google informed me that there was an eye casualty department at the QMC, but it was advised that I seek the advice of my GP if it wasn’t an emergency.  Was it an emergency?  I wasn’t in pain and I could see fine.  I booked an appointment with my GP for the following day.

Husband came back from work.  He was shocked at the state of my eye.  I told him about the GP appointment.

“What!?! Call eye casualty. NOW.”

So, I did.  I spoke to a lovely nurse who said I should come in tomorrow as it did sound like a case for them.  One nil to my husband.

The next morning rolled around.  Thankfully I wasn’t teaching that morning, but I was teaching in the afternoon.  A flurry of WhatsApp messages were sent between myself and my colleagues.  The plan was that if I wasn’t seen by 11:30, my afternoon class would be cancelled. I arrived bang on nine when the department opened, and the wait began.

I was first called in to see a nurse.  She was the same one who I spoke to on the phone.  She was sympathetic.  Rather bizarrely, her husband, thirty years ago, had a tumour in his mouth that, like me, originated from his pituary gland.  He had a huge operation to remove the tumour where they worked slowly to preserve his facial nerve.  He had radiotherapy, like me, and for thirty years had been cancer free.  Lucky him.

After her, I saw another nurse who actually looked in my eye.  He surmised that it wasn’t a dreaded ulcer, but a scratch on my eyeball. I had caught it just in time.  Phew.  Now I had to wait for the doctor to get some treatment for it.

Twenty minutes later, I was called in by the doctor.  It was the usual set up.  Doctor, petrified looking student doctor and bored looking nurse.  The doctor’s surname was something like Vitalas which made me think he was Latvian or Lithuanian maybe?

He asked me when I first noticed it.  Sunday, I replied.

“It is Wednesday.  Why have you waited until now?”

I was dumb struck.  He sighed.  While he was sorting out the prescription, he gestured to the medical student to have a gawp at my eye.  He was very eager and got me looking in all directions.  Soon my prescription was ready and off to pharmacy I went.  All the while I was cursing.  Cursing the fact that it had all been done by eleven.  I would have to teach my lovely afternoon class after all.  The joy.


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.