Scan Results

The following week after my appointment with the plastic surgeon, I was back in Oncology to get my results from my MRI.  Oncology is a pretty grim place.  It’s usually packed so it becomes a wasteland where you seem to fade into the crowd.  However, I now know how Oncology works.  The key thing is to get in early.  So, I was feeling quite smug, sipping my Costa coffee, waiting for Oncology to open at quarter to nine in the morning.

“You’re keen.” joked the nurse as she opened up.

I checked in and carried on reading my book.  Bang on nine o’clock, I was called through.  There’s an awkward bit in every Oncology appointment.  They call you, put you in a side room and make you wait for a further five minutes.  You can sometimes hear the doctors and the nurses in the next room, talking about you or other patients.  Then the consultant will open the connecting to door to your room and the magic can happen.  One time I brought my husband along.  As we waited in the side room, we could hear the doctors and nurses laughing in the next room.  My husband was livid.  He knocked on the door and asked when, if ever, they were going to get around to seeing me.  That didn’t go down too well.

This time I didn’t have to wait long as my consultant appeared after about five minutes.  I was lucky to see her.  I’ve met people who have gone through their treatment and have never met the mastermind behind it all.  I guess being rare has its advantages.  The results hadn’t come through.  I wasn’t surprised.  The longer I have lived with cancer, the longer it takes for my scan results.  The worse happened last summer.  It took a staggering five weeks to get them.  I was beginning to know the receptionists by name which is always a bit worrying.  I mentioned about the plastic surgeon to her.  She seemed interested but didn’t offer any advice. It looked like it was something that only I could decide. Arrangements were made so that I would call the following week to get the results.  If they were bad, they would call me first.  It’s been over a week and there has been no phone call…

Bonkers Part 2

The allotted day had arrived.  Even worse it was Tuesday.  Tuesdays are rubbish for me.  Luckily, we are in exam season.  So, I left my class in the hands of a bemused admin assistant to invigilate yet another mock exam for them.  They took this quite well apart from my manager who still signs off any email I send her about my appointments with, “if you could rearrange this when you are not teaching next time.” Yeah, right.

The ENT department is split into two reception areas.  Normally I am in the second reception area around the corner.  I approached the first reception area, feeling nervous.  The receptionist was on the phone speaking loudly.

“Yes, it’s on the FIFTEENTH.” Pause. “Not SIXTEENTH.  ONE FIVE.” Pause “We’ll send you a letter.  A LETTER.”

She hung up and rolled her eyes.

“Yes?”

I said my name and Dr Q’s name.

“Well it looks like you are here today.” She said sounding quite surprised. “Take a seat.”

I obeyed and got my book out.  After about twenty minutes I noticed something.  Patients were being called out two at a time, going through some double doors and not returning.  Bit worrying that.

After about forty-five minutes mine and another patient’s name were called.  We were escorted by a nurse through the double doors into yet another waiting room.

“I’m sorry but it’s another hour wait from this point on.”

I was on my own but the other patient had his wife with him.  We all sighed in unison.  He reached for his phone and both his wife and I resumed our books.  We were lucky.  After about twenty minutes, the couple were called through.  This took the wife by surprise. She spent a good deal of time faffing about much to the amusement of the nurse and her husband.  I smiled and carrying on reading.

After another twenty minutes, I was called through.  Where had the couple gone?  It was my turn for a bit of awkward faffing.  The nurse led me to a room where sat Mr Q looking immaculate as ever.  I sat opposite him. The nurse took a seat in the corner of the room, facing me.  Mr Q and I exchanged pleasantries.  The nurse looked bored.  I was the last patient in the clinic so it must have been a long morning.

“So, can you remind me why you are here?” asked Mr Q.  I gave him a detailed account of the last six years.  It felt quite strange being encouraged in giving such details.  I have become so used to giving quite a watered-down version of events.  He listened and made notes.  After my history, he asked me to do various facial exercises so he could check out how much movement I had in the left side of my face.

“OK.  What for you is the most important thing to be done?”

I was flummocked by the question.  I’ve never been given a choice before.  I remembered our previous appointment.  He had said the he didn’t want to tread on the toes of the eye people.  So, I said I wanted my mouth sorted and then maybe the eye.

He looked puzzled.

“If you want my opinion, you need to get the eye sorted first.  I’ll refer you to Dr S to advise you on that…”

He outlined a possible procedure that involved cuts to my lower eyelid and weights that could be either gold or platinum, inserted in my upper eyelid to ensure my eye closed properly.  Crikey.  But this was merely the beginning.

Once I had had my eye sorted, then work could start on my mouth.  There were three options:

  1. A hoik up. This was the easiest procedure. He would cut along the smile line on the left side of my face. Hoik it up. Cut behind my ear and use a bit of my thigh to replace any facial tissue he had to get rid of.
  2. The thigh nerve. He could take a muscle from my thigh that had a nerve in it. He would attach this to my face and attach the nerve to the nerve endings near my temple. I then could have a faint smile. I think he ruled this one out as he felt that I didn’t have enough nerve endings in my left temple. Lovely.
  3. The nerve graft. The complicated one. A piece of my right facial nerve would be stretched to the left side of my face. Once it had been grafted over, a piece of muscle could be attached to it and over time, I would be able to smile. This would involve two operations. Although he had done the procedure before, he felt I would be better going to a specialist centre for this op. The centres were in Newcastle, Birmingham and…erm… East Grinstead.

It was a hell of a lot to take in.  I was used to no options.  If there was an option there was only one and I had to have that otherwise I would die.  Part of the reason why our house is in a state in disrepair is because my husband and I are rubbish at making choices.  We are both ditherers.  Now I was being asked what choice I wanted to do with my face.

Mr Q picked up on my anxiety.

“Listen.  There is no rush in any of this.  We can take our time.  Come back and see me in a months’ time and we’ll talk about it further.”

I nodded and looked to the nurse for some reassurance.  She looked blankly at me and escorted me out of the building.

Bonkers Part 1

It started with a rude awakening.  I forgot my husband had booked the day off so I dutifully set the alarm.  The alarm buzzed.  My husband swore. I reached for the headphones of my portable digital radio.  I turned to Five Live.  I like Five Live.  It keeps me awake that sadly The Today programme on Radio Four often fails to do.  In my semi-conscious state, I heard something being mentioned about the Cancer Drugs Fund.  A report had been written saying it was a waste of money.  The presenter said that if you had had experience of using the fund to text in.  After about fifteen minutes, I slumbered out of bed and sent a text saying that I wouldn’t be alive if it wasn’t for the Cancer Drug Fund.  I knew my parents, who listen to Five Live, would be travelling up in stage one of their trip to North Wales for my aunt’s 80th on that Saturday.  I thought that if they read my text out, it might make the journey a bit more interesting.

I went downstairs and made my porridge.  Then a phone call. Private number. Interesting.  A harassed sounding researcher asked if I wouldn’t mind speaking on the radio about my experience.  Crikey.  I had to take the car for its annual service for nine.  If I did the radio, it would be cutting it fine to get there on time.  Sod the car.  I agreed.  I managed to contact my parents who were about to start on their odyssey to Wales and left a voicemail for my sis who had the audacity to be working.  My husband carried on sleeping.  The allotted moment came.  I blundered my way through.  After five minutes, it was all over and off to the garage I went.

At the garage, I was waiting for my husband to pick me up.  I had invented an elaborate story as to why I was late, but the mechanic didn’t seem bothered.  My husband has just arrived when my phone went.  Another private number.

“Hello Anna.  This is Tim from the Jeremy Vine Show on Radio 2.  I heard you on Five Live and I was wondering if you would like to appear on the show to talk about the Cancer Drugs Fund…”

Crikey.  We had a bit of a chat with my husband looking bewildered on what the hell was going on.   Arrangements were made.  He would phone on my landline at twelve and then I would address the nation.  I relayed all this to a mildly bemused husband and awaited the phone call.

When we got home, I tried to keep myself busy by pottering around.  But it was no good.  I was a ball of nervous energy.  Chill woman. Watch some naff telly.  I switched on and tried to settle down in front of GP’s: Behind Closed Doors.  It didn’t help.

11:57am.  Landline rings.  Deep breathe.  It’s my father in law.

“We’ve been trawling through Jeremy Kyle and you don’t seem to be on…”

Good grief.  Jeremy Vine on the radio NOT Jeremy Kyle on the telly.  At least not for now anyway.  Father in law apologies profusely and we hang up.

12:00pm. No phone call.  12:04pm.  Still no phone call.  12:07pm. This is getting ridiculous.  12:09pm. Phone finally rings.  It’s another Tim not the same one I spoke to earlier.  I’m told to listen to the programme and speak when prompted.  What follows next is a report that completely trashes the Cancer Drugs Fund.  It outlines how many nurses could have been employed with the money wasted on it and other such stats.  Blimey.  This may be tougher that I thought.  The Prof who helped to compile the report is interviewed.  He weights his answers carefully and is not too judgemental.  Then my moment comes.  I relay my story and I’m struck how quiet it is.  It feels like I’m talking to a void.  I want to pause and say hello just to make sure someone if there.  Jeremy asks a few annoying questions and states my age live to the nation.  He then lines up the Prof to respond to my story.  The Prof is a true gentleman and agrees with a lot of what I said.  I agree with the Prof too because he knows far more about this kind of stuff than me.  Also, when you are in my position, the more Profs on your side the better.  Jeremy sounds a bit disappointed that we are not tearing into each other.  But that’s the thing about cancer and illnesses in general.  There is nothing like the prospect of your untimely death that somehow forces you to find a compromise with any medical professional that happen to stumble across.

It’s a relationship that works two ways.  Medical bods also love meeting weird and complex patients.  My neighbour gave me some good advice regarding doctors.  She has lived with Non-Hodgkin’s Lymphoma for over twenty years.  She told me the key thing about doctors is that they are practising doctors.  This means that they are constantly learning as they go along. The medical profession is under a lot of pressure to keep up with the ever-changing face of medicine.  All the while the list of patients grows ever longer.  The doctor – patient relationship is a balancing act.  Communication and listening is key for the relationship to be positive.  Without it, we all end up as a set of statistics.

 

Confessions of a Junior Doctor

A&E was packed.  Doctors and nurses were running around all over the place.  This must be in London, Birmingham or Manchester.  One of the great cities of the British Isles that are groaning at their seams.  But no.  This hospital was in Northampton.  It was full to bursting and severely understaffed.

None of this is the fault of the staff.  Nor is it the fault of the patients.  The NHS is a victim of its own success by pushing the boundaries of medical care.  We are living longer than ever before.  Something that our politicians are finally recognising. The problem is that the other vital infrastructure needed to support this, hasn’t caught up.

Governments think of everything in the short term.  This way of thinking has slowly dripped down into all aspects of life.  This short term thinking is in direct conflict with the long term planning that the NHS is crying out for.  It operates by using targets to prove efficiency.  A hospital or a school isn’t a machine.  You don’t pump one thing in one end and get a product at the end.  People aren’t commodities.  Yet the management strategies being adopted fail to recognise or question this.

Healthcare, as well as education and to some degree, law enforcement, involves dealing with the whole individual rather than the illness, the exam or the crime.  The only place where this is really done in society is when someone wants you to buy something.  Go to any car dealership and they are trying to find out every aspect about you to find a car suitable to your needs.  The same goes with property and estate agents.  You are even asked for your name when you buy a coffee which puts in perspective one of the junior doctors who had been so busy, she didn’t have time to remember her patients’ names.

This is something the junior doctors in Confessions of a Junior Doctor know all about.  We saw an oncology junior doctor being brave enough to tell her consultant that she wouldn’t be hurrying her rounds.  Her superior was informed that if she didn’t take the time to reassure and listen to one particular patient, he would get extremely anxious and possibly talk of suicide.

On another ward, another junior took the time to find out why a relatively healthy twenty year old man was only weighing four stone.  What he discovered by just listening, was that the patient was using cannabis heavily.  Although cannabis is famous to inducing the munchies, if overused, like alcohol, it can suppress appetite.  I thought the consultant was going to kiss the junior doctor for discovering this.  The man had often been in and out of hospital and he was a bit of a mystery. Yet the junior doctor found out the root cause of the problem just by listening.

Such stories give you hope that all is not lost.  But these are doctors who are going against the system.  They are doing what they think is right, not what some of their superiors want them to do.  Now they can just about get away with it.  Whether they could get away with this in five years’ time, no one knows.