Never Forget

We’ve come so far and we’ve reached so high.  And we’ve looked each day and night in the eye. And we’re still so young and we hope for more.  Yes, it was Take That time again.  Roughly every year since Take That have reformed, my sister and I have seen them in some form or other. At their maximum, there was five.  Now two have jumped ship and they are down to three.  As we’ve seen them so often, I’m now on the pre-order ticket list.  For pre-ordering their album, I get to access the tour tickets a couple of days before the hoy polloi get them.  Sweet.

For some reason, they seem to announce their tour dates for the upcoming year during the October half term.  They know that their main client base must be teachers both practising and retired.  Every year my sister and I have the same argument.  I want to stand and she wants to sit.  Every year my sister always wins out. Oh well maybe next year…

So, there we were last Saturday, in the O2, up in the Gods, sweltering away.

“Hello London! You’re looking fabulous on a Saturday night!” announced Gary Barlow in the way that Gary Barlow only can.  The opening chords for Greatest Day rang out and up we stood.  Half way through a woman whose head were in front of my feet, started shouting at me.

“What?!?”

“You’re spilling your beer on my head!”

“Oppss! Sorry!” I said and put the mouthful of beer I had left in my plastic pint glass into the drinks holder on my seat.  I stopped singing.  I knew it was far worse.  It wasn’t beer that had gone on that woman’s head.  It was drool.

My drooling has reached epic proportions.  I am drooling everywhere.  On student’s work, random women’s’ heads, on the dog, on nurses’ iPads, you name, I’ve probably drooled on it.  The reason for the drooling is my mouth.  As I have no facial nerve on the left side of my face, the left side of my mouth is drooping quite badly.  It’s happened quickly.  Only last year in photos, I’m grinning away celebrating my 40th birthday.  Now it’s all lopsided.

People are noticing.  When I went to the local tip to get rid of some gardening stuff, the old bloke who works there asked if I had had a stroke.  I told him a condensed version and he looked horrified.  You can forget how bonkers it all is to civilians. So, it was a bit of a blessing that after Take That, I had an appointment with the plastic surgeon.

I decided to take some moral support so my husband came with me.  We managed to squeeze in a trip to Costa to discuss tactics beforehand.  I had decided to go with the bog standard hoik up.  I wanted to stop drooling asap and to-ing and fro-ing to Birmingham wasn’t going to help that.  We arrived bang on time and an hour later we were called in.

My husband has a weird theory about medical professions.  He thinks you can tell a lot by looking in their eyes.  They either have sharp, focused eyes or dull, lazy eyes.  Thankfully Mr Q’s eyes are firmly the former.  I told him of my preferred option and the reason why.  He nodded and didn’t try and change my mind.  In fact, I think he agreed with it.  Now came the tricky part.  We arranged for him to come to my appointment at the eye clinic in August.  There both he and the eye surgeon would discuss further what to do.  Then, hopefully, I would have one operation where both my eye and my mouth would be hoiked up.  The stitches would finally come out of my eye and the drooling would stop.  It all sounded good.  We shook hands and arrangements were made to meet at the end of August.  My drooling days were numbered.

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.

Columbo

Columbo is like Marmite.  You either love it or hate it. Columbo always reminds me of rainy Sundays with my mum concentrating intently, while knitting away.  My mum loved Columbo.  I think this was because you found out who did the murder in the first half an hour of the programme.  With other whodunits, mum would usually fall asleep half way through.  It would be annoying explaining to her the next day who did what.

My favourite Columbo episode involved William Shatner of Star Trek fame.  In it he played a wine buff.  The two of them had a wine tasting face off in the last scene where you were unsure which wine was poisoned.  Seeing two such experienced actors play off against each other was great for a Sunday afternoon.  Of course, Columbo knew exactly what was going on and off went Shatner, hand cuffs and all.

I like William Shatner.  He seems a man who doesn’t take himself too seriously.  I read his autobiography a couple of years ago.  It’s a good insight into the temporary nature of the acting business.  Shatner’s coping mechanism of dealing with rejections that came his way was to shrug it off and keep on plugging away. Our family have a slight claim to fame involving Mr Shatner.  My mum’s cousin shared a room with him while at uni in Canada.  This was a while ago but in his autobiography, Shatner describes his time at uni by “hanging around with cool guys with red sports cars”.  Whether this was cousin Brian or not, is unknown.

My mum also has a quite amazing claim to fame which stunned my husband into silence.  While she was at teacher training college in Loughborough, she popped down to the student union to watch the film that would be playing at their weekly cinema club.  Once she got there, she saw that the film had been cancelled and that a young guitarist would be playing instead.  My mum decided to hang around and see if he was any good.  That guitarist was Jimi Hendrix.  I don’t which fact is more surprising.  The fact that my mum saw Jimi Hendrix in his prime, before he hit the big time or the fact that Jimi Hendrix was in Loughborough.  I wonder what he thought of the East Midlands…

I was once again at another marvellous institution of the East Midlands awaiting my follow up appointment in the eye clinic to see what on earth would be happening. On arriving at the Queen’s Medical Centre, a harassed sounding tram driver told us that unfortunately the lift wasn’t working at the tram stop.  Not a good start. I checked in at the eye clinic, did the usual eye test on arrival and settled down in the waiting area in time for Doctors.

After about half an hour I was beckoned into a room.  I had decided that this time I would use a different strategy.  She had probably already decided what she wanted to say, so I stayed silent.

“How are we today?”

“Fine…” (even though I have half my left eye sewed up, I felt like saying, but didn’t.)

“Right let me look at it then.”

She examined my eye and reported back that it was fine.

“I’d like to see you in three months’ time.  What medication are you on?”

This put me on the spot. I could remember my painkillers and the cancer stuff.  But now I was expected to remember the eye stuff too.

“Urm… something beginning with “L”?”

She frowned.  Surely it must be in my notes! I felt like screaming at her but I kept up the silent treatment.  She scribbled on a prescription pad.  It was barely legible.

“OK.  Here you are and see you in three months.”

“So, I guess the stitches are a permanent thing then.”

“Yes, until you…”

She didn’t need to finish the sentence.  We both know how it ended.

I nodded and left the room.  I smiled one my way to pharmacy.  I had a plan…a very good plan…

How to handle people with cancer

Cancer is a terrible, terrible illness. I have found out those around you have very varied reactions to it.  These reactions are in response to when you say the word cancer, people think of death.  When you tell someone, you have cancer, you are telling that person you are going to die.  This means that the person you are speaking to is forced to acknowledge your mortality.   The awkwardness comes because they are also forced to acknowledge their own morality too which, unsurprisingly, is not an easy thing to do.  So, there are a whole load of hidden demons lurking there.

People with cancer sometimes give others quite a hard time in their response to it.  Whatever they do, it always seems to be the wrong thing.  It’s either far too suffocating or they aren’t doing enough to help.  This is because cancer and any other life limiting illness, changes you.  You have no idea what is going to happen and ultimately, you are going to die.  For this reason, your own life becomes much sharper.  You can see through the fog of nicety and social conformity. You know exactly what you want.  For once it isn’t about others, it’s all about you.

For me, to widely generalise common reactions, most people fall into the following categories:

The “I’m here not matter what” person

Every cancer patient has encountered one of these.  I encountered one just last week.  I was at the cancer support centre I go to and there she was, nursing a green tea.  I said hello and  got the full story.  Her friend was upstairs in the breast cancer support group.  She had been diagnosed with breast cancer about six months ago.  This woman had been to every single appointment with her friend.  She had been to every scan, every blood test, every chemo session, every radiotherapy session.  She had cooked breakfast, lunch and dinner for her.  She had cleaned her house from top to bottom.  She had walked her dog.  She had accompanied her taking and collecting her children from school.  She had been at her friend’s side ever since she had been diagnosed.  I smiled.  I was thinking what was going on upstairs.  I bet that now she had finally gotten rid of her, at last she could now finally tell the others in the breast cancer support group what exactly she thought of her!

But she has been soooo supportive! I hear you cry.  Well yes… but to a point.  What you need to ask is how much of all this is to help her rather than her friend?  I got the impression that her friend with breast cancer had no say at all.  It seemed to make her feel better about the cancer diagnosis rather than her friend.

Her friend with breast cancer is partially to blame as well.  When I started my various treatments, I was quick to say to all of my loved ones that I wanted to go through them either with just my husband or alone.  I didn’t want to have the pressure of having to “entertain” people, especially through chemo.  That was my choice. I was always struck by how while during chemo, you would have the cancer patient slumped on the chair.  Next to them a chirpy friend would be asking everyone in the unit if they fancied a cup of tea.  Although I guess this chirpiness is a coping strategy, it can be very annoying.  Be honest with the person who has the illness.  Just have a frank, straight forward conversation where you tell the person what you can do.  Then ask the person if that’s acceptable to them for you to do it.  A person with cancer is finding life hard, but they do have a brain.  In fact they are pretty much the same person you were friends with before the diagnosis, so treat them as so.

The “Just Tell Me What To Do” Person

This person is freaking out.  Maybe you are the same age as this person.  You telling them that you have cancer is like the grim reaper telling them they are going to die.  Obviously you can understand people being shocked that you have cancer.  That is a perfectly natural response.  What is annoying is the response to it.  “If there’s anything I can do, just let me know…”

What’s wrong with that?  Well it’s the ultimate non-committal response.  It relies on the person who has the illness to conjure up a task for their friend to do.  When you have a life limiting illness, your needs vary from day to day and sometimes from minute to minute.  The “If there’s anything I can do, just let me know…” I think weirdly, takes power away from the cancer patient and gives it to their friend.

And all the while they are no closer to accepting the change in circumstances.

This response is more difficult to counter. I have been guilty of saying this when someone I know is going through a crisis.  I guess the best thing is to tell you friend that if you are doing something, ask them if they want to come too.  For example if you are going shopping, ask your friend if they want to come along as well.  If they are too ill ask if there is anything they can get you.  Be specific not vague.  The key is to ask and to remember that you friend is still your friend.  They just have cancer as well that’s all.

The “Do Nothing” Person

I actually don’t mind the “do nothing” person.  To me the “do nothing” person is respecting your space and giving you the time that you need to accept the diagnosis.  This is a completely different story if the “do nothing” person is your husband, your wife or your parents.  If your support network shows no support whatsoever and expects you to carry on regardless of all the poisons and radiation that you are being exposed to then this is a bad thing.

Part of this reaction is denial.  It’s no surprise that quite a lot of marriages break up when one partner gets a life limiting illness.

You must accept that your partner, son, daughter, brother, sister, friend has changed.  They can do most things but there are some things they can’t do.  If they ask for help, provide it.  Don’t tut, sigh, moan and groan.  This is also true for social arrangements.  If they can’t come to your wedding, birthday party, christening, barbecue or whatever, accept it.  Although it does look a little selfish, for the person with the illness, knowing that you have accepted their decision and are having a fantastic day, more that makes up for them being there in person.

It’s hard knowing what to say or do around people who have serious illnesses and there is no one correct answer.  However the key thing to remember is that your friend, husband, wife, brother, sister’s needs come first.  If they are not in a position to articulate these then use your noggin.  You know what they are like.  If they like milk in their tea and there’s no milk in the fridge, buy a pint of milk for them.  If they are fretting about the washing up, do the washing up.  You don’t need to ask permission, just do it.  As the saying goes, actions speak louder than words.  Don’t make a song and dance about it, just do it.  Also give your friend, husband, wife, brother, sister a hug.  They will more than likely need that too.

 

Catfish

I have a confession to make.  I am addicted to Catfish.  No, this isn’t some wonder cancer cure.  It’s a programme on MTV.  MTV has gone through a weird change of late.  It used to stand for Music Television and play music videos.  I remember great excitement when my friend, Fran, thanks to a cricket mad dad, acquired Sky TV.  This meant she had access to MTV.  I used to cycle over to her house most weekends.  We became a female version of Beavis and Butthead, slagging off the videos they showed. We secretly hoped the next video wouldn’t be as awful as the one we were currently watching. But it usually was.

Now the last thing that MTV shows is music.  They may feature a quick thirty seconds of something, but that’s your lot.  What MTV does show is back to back reality TV shows.  Most of these shows seem to involve various people getting extremely drunk and doing stupid things.  These programmes have the extremely annoying habit of showing someone doing something stupid. Then a Vox pop with the person who did the stupid thing, describing what they did.  This irritating bit of editing is used in most American reality TV.  It goes something like this.  A man trips over. Next shot is the same man saying as if he’s being interviewed:

“Oh, my God! I tripped over! “

Yes, mate.  We know you did.  Now get over it and shut up!

There is one show that doesn’t fall into this category and that’s Catfish.  Catfish started life as a film.  It was made by a very nice bloke called Nev Schulman.  The film follows Nev and an online relationship he is having with a rather glamourous model called Megan.  However, there is a problem.  Megan is never able to Skype or video chat.  She also lives on the other side of the States from Nev.  Consequently, months go by and Nev has never met Megan face to face.  The film follows Nev as he tries to track down Megan and meet her.  He soon finds out that she is not the girl in the picture.  In fact, she is a married mum in her fifties with two severely disabled children.  Megan was created by her as a bit of an escape from the realities of her world.  Incredibly Nev reacts to this news quite calmly.  He is now friends with the real Megan and is in contact with her.

That’s Nev’s story.  Now Nev and his abled assistant Max Joseph see it as their mission to expose other “catfish” by meeting people who have been in long term online relationships, but have never met their partner.  They set about investigating who the person is.  They set up a meeting between each party and watch the sparks fly.  It is never the person they think it is.  Sometimes it’s someone from the opposite sex.  Sometimes they know the person and they hold a grudge against them.  One time it was the wife of a married couple who felt sorry for the person they were Catfishing.  She even got her husband in on the act by calling and pretending to be the guy that the wife was pretending to be.  Confused?  They’ve had everything on Catfish.  The course of true love never runs smooth…

What Catfish shows is that everyone needs someone to listen to them.  You may secretly know that the person you are communicating with online isn’t who they say they are, but the fact that they seem, genuinely concerned about you, makes you feel special.  The act of listening is something that is missing in everyday life.  As we are no longer listening to one another in the real world, it’s very easy to slip into the online one where every voice seems to matter.

There is also a danger that if you only listen to the how wonderful you are, your ego gets bigger and bigger and you lose touch with reality.  This happened in a classic Catfish episode when this guy was convinced he was in a relationship with Katy Perry.  He had an engagement ring made and was ready to pop the question.  In the real world, he was communicating with a lonely Canadian teenager who had recently moved to England and was struggling to make friends.  Even when he met his Catfish and she explained why she did it, he still refused to believe it.  In his mind, it was Katy’s way of covering up her true feelings for him by getting a stooge to pretend to be her.

It’s easy to live in a fantasy world and to believe our own hype.  The current President of the United States is a shining example of this.  Yet it’s through listening to others that we can see life from a different perspective.  Now, everything is in black or white.  You are with us or against us. You have this treatment or none at all.  There needs to be more active listening, especially in institutions like the NHS.  I hate it when I go to an appointment and the consultant or registrar has already decided what they are going to say before they have met me.  How do they know where I’m at without asking me first?  It’s this lack of meaningful conversation that draws people online.  This could be quite dangerous from a cancer point of view.  Is it really a definite cure or just a huge Catfish that you are dealing with?