The I – Word

As the end of the academic year approaches, I’ve had to pop into work. Every student who completes an exam has their name inserted in the all-important claim spreadsheet.  As I left in rather a hurry in May, I had a sneaky suspicion that although my students’ names were entered, their outcome, if they passed or failed, may not have been.  So, I needed to pop in to ensure that this all-important spreadsheet was present and correct.

Although I was looking forward to catching up with my fantastic colleagues, I was approaching the day with a heavy heart.  Being at work seems a lifetime away. I was bound to get emotional about it.  I was also going to take a mental note how many times I would hear the word inspiration or inspiring.

I’ve been having a problem with those two words as I don’t feel either in any way.  When someone says this to me, I have no idea how to respond.  If I say well yes, thank you of course I’m an inspiration, I sound like a complete knobhead.  Yet if I do the opposite and contest it, it makes the person who said it feel awful and once again you look like a knobhead.

I’ve never been good at compliments at the best of times, but these two words do leave me speechless.  I remember reading about the para athlete Hannah Cockroft taking issue with some BBC reporter about it.  I couldn’t find the interview, but I found a great outlook on it by another para athlete Richard Whitehead.

I’ve seen Richard Whitehead.  A couple of years my mum and I volunteered to be happy clappers at mile twenty-five of the London Marathon for Macmillan.  It was a great day, standing on the London Embankment in the sun, cheering away.  Most of the runners by mile twenty-five were in a bit of a bad state, quite understandably.  However, when Richard ran by, he was as fresh as a daisy.  Richard has both his legs amputated above the knee.  This means that he doesn’t wear the blade type prosthetics but ones that are completely solid.  To see him breeze by so easily was …well… inspirational.

Richard believes that if he can inspire people to do things, then he’s happy about being called inspirational.  I can see this point of view.  Yet I can’t see how I am an inspiration.  Richard and Hannah work hard and do something.  At the moment, I am doing nothing.  I am just ill and getting on with my life the best I can.  However, something happened a couple of weeks ago that made me question this.  My story was published in the Maggie’s Centre in house magazine.  A woman I had never met before, read my story and told me that after reading it, she plucked up the courage to go and get a second opinion about her cancer.  So, if in a little way if I can inspire people to ask more questions about their lives and how they live them, then that is a good thing.

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Lead, Follow or F*** Off

 

My husband is a man of few words.  When he does speak those words tend to be of the Anglo Saxon variety.  While talking about how others  should react to our current predicament, he summed it up pretty well.  They should either lead, follow or f*** off.

Fortunately most of my family and friends fall into the second category.  The support we have received has been so immense that I can get quite emotional about it.  No one has entered the third category which I know isn’t the case for some people living with cancer.  However there is one person who is firmly in the first category. She has led the way throughout this whole ordeal and that’s my sister.

When you look at me and my sister, you can tell we are sisters.  We have the same hair, eye and skin colouring.  My sister is petite and sporty looking while I am taller and a bit chunkier.  We share the same sense of humour and on the whole we have always got on pretty well.

How we differ is in our outlook on life.  I’m quite laid back on the whole and take a general que sera outlook on the world.  My sister questions everything.  Why are you doing that?  How did you get here?  Why don’t you want an ice cream?  It goes on and on.

My sister is far more scientific and logical than I am.  She studied physiotherapy, stayed at home and got a good, steady job as a physiotherapist.  I studied Politics, went 150 miles away to Leicester Uni, got drunk quite a lot, taught abroad for a couple of years before somehow landing in Nottingham and getting a job at a Further Education college teaching English as a Second Language. Yet she has saved my life twice.

The first time was when I had a nagging toothache and earache which the antibiotics from the GP weren’t doing anything for.  She kept pushing and pushing until finally I went to see Mr C privately and eventually got diagnosed.  I’ll never forget her first encounter with Mr C.  She was six months pregnant with my nephew at the time.  Mr C smarmed into the room where she proceeded to interrogate the life out of him.  You could see he was wondering who on earth this slightly manic pregnant woman was.

The second time she saved my life was when I had my first reoccurance.  The news knocked us all for six.  My husband and I went on a Caribbean cruise during which I reached some kind of acceptance of the situation.  I started to think of plans and made a will for the inevitable to happen.  But my sister refused to accept this.  She managed to organise an appointment for me to see one of the best brain surgeons in the country.  It was a nightmare trying to get scans, blood work and other stuff all together in a matter of days,  Somehow it all came together.  The conclusion?  Although an operation was out of the question, he would pass my notes onto the Royal Marsden.  A couple of days later I had a call from my oncologist.  They were prepared to give me a second round of radiotherapy thanks to the intervention from the Marsden. This meant that when the cancer reoccurred again a year later, we knew to go straight to the Marsden.

I have learnt a lot from my sister.  I now take control over everything to do with my cancer.  I get scan reports, histology reports, everything.  Although you are powerless over the disease itself, there are some areas you can control.  I feel very lucky to have my sister constantly questioning everything.  It can be irritating at times but you know it’s for the best.  When my letter from the Christie came through, I popped down to see my family and watch the football.  I showed my parents the letter but halfway down on the A3 to her house, I realised I had forgotten to take the letter to show my sister.

“Don’t mention it to her.” advised Dad.

As soon as we got there and I had a cup of tea in my hand.

“So let’s have a look at this letter then…”

Rumbled.

Snakes and Ladders

 

Then you realise. The eye, the mouth. That was all a distraction. It was a Friday morning and I had just finished hoovering. I had my treatment today so I was tidying up for the nurse. The phone rang. It was my oncologist. My scan results were in. It wasn’t good. I managed to keep it together on the phone. Just. When I hung up it all came out. Not again. I was going to have to go through it all again.
I called my parents. Again I managed to keep it together quite well. They were going to come up with my sister. Phone the Marsden was the message. I phoned the Marsden. My oncologist had said she had written to them. We needed action now. The Prof’s secretary didn’t work on Friday so no appointment could be made. I would have to wait over an agonising weekend before anything could be done.
The nurse arrived. I asked my oncologist whether it was worth carrying on with my existing treatment. She said yes as it might slow down the growth. The nurse got the brunt of it. However she listened, gave the treatment and went. That’s all I wanted. Someone to listen.
My parents and sister arrived and we had a lovely weekend together. Monday came around and bang on nine, I called the Marsden. The earliest appointment was in three weeks’ time. My parents and sister were hoping for it to be earlier. I wasn’t too upset as it meant I could tie things up at work. The secretary said it was worth calling later on in the week in case there had been any cancellations. Worth a try.
My parents and sister went home and I sent yet another dreaded email to work explaining the situation. The response was amazing. I had reduced my teaching hours because the problems I was having speaking, so it was quite easy to have an extraction plan. I met with my manager who was extremely sympathetic. I made a promise that I would definitely be back for September. Although a few tears were shed, it’s a promise I will keep.
On Wednesday I decided to test the secretary’s word and call to see if there had been any cancellations. There had and my appointment was brought forward by two weeks. At last a chink. The following Tuesday I had an appointment with my oncologist. She wasn’t there so I was seen by a dumb struck registrar who didn’t know what to say. I asked if it was possible to have my scan.
“Here.” She handed me all the notes that she had about me and the scan. It was all gobbledegook to me but at least it was something. She also told me to speak to the data department within the hospital to get a CD of my scan. I thanked her and did just that.
D Day arrived at the Marsden. The Prof was there and as ever was fantastic. We gave him my notes from the registrar and sat waiting for the verdict.  Radiotherapy was not an option because of the way the cancer had spread. The only option to kerb it would be chemical. There were no trials at the Marsden currently due to the rarity and location of the cancer. However the Prof knew a man.
There was a doctor at the Christie Hospital in Manchester whose speciality was salivary gland cancer. He was looking at the genetics of the tumours and developing drugs connected with those genetics. He was going to refer me to him so that my tumour could be tested to see if it was suitable. If not, another round of chemo could dampen things down a little.
My mum is from Manchester and I have two cousins who live near there. If it had been any other city in the UK, we would have been stuffed. We shook hands trusting the Prof to keep his end of the bargain and secure the appointment with Mr Salivary Gland in Manchester. The waiting game had begun.

Shout! Shout! Let It All Out!

“It’s not fully closed is it?”  My husband was looking into my eyes but it wasn’t sweet nothings he was whispering.  “You need to go back to Eye Casualty.”

As I was descending the stairs down to Eye Casualty, someone prodded my shoulder.

“Ayup! Back again!”

It was one of the nurses who was on the ward when I was admitted.  I got the same reaction from the receptionist and the sister in Eye Casualty.  After a three hour wait with a prisoner, which caused a flutter of excitement, I was seen by a very efficient doctor.  He gave me gel as opposed to drops and told me to come back on Friday.  Double sigh.

Friday dawned and it seemed not better nor any worse.  It was the same receptionist as Monday.  We chatted a bit about the wait times.  I told her how amazed I thought the doctor was, taking time to assess me properly when he knew he had a room full of patients outside, champing at the bit.

“We take the same time as we always have done.  It’s just that the demand is so intense, we don’t have the staff nor the resources to shorten the wait times.”

It was quite refreshing to hear this.  I don’t think that is the case for all hospital departments nor patients.  This week a shocking report was released about people with learning difficulties.  The main finding was that this group of people’s life expectancy was thirty years less that the rest of the population.  Part of the reason was because the issues involved in the patients and their families had in communication.  There were some shocking case studies.  One poor lad died of constipation because he couldn’t communicate what was wrong.  Another more famous case was that of Colin Sparrowhawk.  He drowned in a bath because inconsistency of care.  Yes there was a report and recommendations but nothing gets done.  In fact it’s probably worse.

While I was in hospital, I ran out of water.  When the nurse eventually arrived I timidly asked for some, knowing how busy she was.

“You need to shout more loudly, duck.  You won’t get anything in this place if you don’t.”

She’s bang on.  You need to shout about for just about everything.  But what if you can’t shout?  What happens then?

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.

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.”