Letter Limbo

 

It’s not nice, waiting.  Time to take the bull by the horns.  After a few dead ends I finally got to speak to Mr Salivary Gland’s secretary.  She was lovely.  She hadn’t heard anything from the Prof so told me to give the Marsden a call.  She gave me her direct line to keep in touch. I phoned the Prof.  Rummage, rummage, ah yes! Found the letter and it just needs to be verified by the Prof.  Will be in the post by the end of today.  Promise.

 

The weekend came and went as did Monday.  On Tuesday deep breathe and I called Mr Salivary Gland’s secretary.  She had heard nothing, nada. Called the Prof again.  Ah yes! No, the Prof isn’t in clinic today so won’t be able to verify the letter. He’ll definitely do it tomorrow.  No we can’t send an email.  Referrals can only be done by letters. Humph.

 

Wednesday and a letter for me from the Prof explaining what had happened during our consultation.  Mr Salivary Gland had been copied in.  Looks promising.  Scan it to his secretary! My sister cried. But I don’t have her email! Was my response.  Slight pause.  Photocopy it and post it to him! My sister countered back.  Good idea.  So, I did that and also copied by scan report for good measure.  Posted it all at the post office with a little note explaining it all with my contact details and back to waiting I went.

 

Then a chink of light.  An email from Mr Salivary Gland’s secretary.  We had at last reached the 21st century. Letter and scan report received.  Could she have my oncologist’s secretary number to get my histology history?  I ran upstairs, emptied a drawer and found it.  Emailed it back and asked if they would like a CD containing images of my scan? Yes, please was the answer.  It was half four.  The post office closed at five.  So, I tore down to the post office and sent the CD off by recorded delivery.  Will be there by Friday morning I was assured.  Got back home and collapsed on the sofa.  Now the real waiting game could commence.

 

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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?

Paul

I’ve always been a talker.  It got so bad in my teenage years that my Dad got one of his mates, who worked at BT, to send me a letter on headed paper supposedly from the CEO of BT, requesting that I limit the amount of time I spent on the phone.  I ignored it completely of course.  Although medically, the facial palsy has affected my left eye, the general sagginess is also pulling down the left side of my nose.  This means that my voice has suddenly developed a nasal tone.  It sounds like I am talking with my left nostril closed.  To me it sounds God awful.  However, I listened to myself delivering a mock speaking exam to one of my students and it didn’t sound that bad.

The two things I need to be able to do in my job is read and speak.  Reading is just about manageable with my one working eye.  It’s the speaking that’s the sticking point.  If I speak for a while, I get breathless.  My speech also turns to a mumble which is no good when you are supposed to be teaching English fluently and clearly.  I took a deep breathe and emailed my manager.  Her response was amazing.  We switched classes round, finished classes early and I’m still able to work, albeit in an administrative capacity. Part of the reason for this is because it’s exam season.  Spreadsheets are being formulated and completely.  Learners are doing mock after mock all to ensure that the data matches the targets that have been set for funding.  In one such mock, the learners had to complete half sentences.  One sentence began “I wish”. One learner wrote “” I wish I can go to Syria to build again my house in Homs.” You feel pretty inadequate pointing out the grammatical errors after a statement like that.

I feel that since the mild deterioration of my health, I have formed an unseen bond with some of my learners.  Some of them have been through such traumatic experiences that I could never comprehend.  Yet they survived.  In that way I can identify a lot more with them.  I’m a sort of survivor too.  They have been also fantastic about the fact that some of their much-needed classes are finishing early.  They’ve not said so but there is a silent acknowledgement that it is for the best.

It’s not easy.  We watched the film Paul and there was a scene that had me in tears.  Paul is a comedy about two Brits, Simon Pegg and Nick Frost, who are on an American road trip around Area 51 when they encounter and have fun and frivolity with a real alien called Paul.  Whilst on their mission to return Paul to his mothership, they meet Kirsten Wiig who has a lazy left eye.  Paul puts his hand on the left side of her face and the lazy eye magically disappears.  I long for a Paul.  A Paul to put his hand to my face and put my nerve back, take away the ulcer and make me, me again.  I have accepted that my face will never look like how it did before.  But that never makes it easy.

We Are All Individuals

“I’ve seen you, before haven’t I?” asked the friendly Scotsman. I smiled.  In any other circumstance I would be flattered.  On this occasion he was leading me down a brightly lit corridor and into a broom cupboard.  There he would be giving me a local anaesthetic, so I could have my left shut for good.  Finally.

The anaesthetic was administered, and Alana arrived.  She would be performing the procedure.  We were on first name terms now, which in a hospital setting, is not necessarily a good thing.  The surgery was performed without a hitch.  After a complimentary cup of tea, biscuits, an epic wait in pharmacy and a penalty tram fare, I was home.  Phew.

After a fantastic week in Devon I was back on my home turf, the eye outpatient clinic.  It was more packed than usual.  Maybe the raised chocolate consumption over Easter led to more eye issues?  Who knows? Although my appointment was for 1:30pm, I was called through at 2:15pm, which meant I could watch Doctors, which is a guilty pleasure of mine.  So, I arrived in the examining room in quite a good mood.

However, the doctor wasn’t Alana.  It was a tired looking registrar who clearly hadn’t read my notes.  An interrogation ensued, and it was quite clear that I wasn’t giving the right answers.  It revolved the medication I was on which I had forgotten to bring with me.  I’d be damned if I could remember the names of the stupid things.  I just put them in my eye.  End of.  She wasn’t happy.  I was spat out and told to wait for when Alans was next free.

I sat in the waiting room feeling like a right numbskull.  I was easily the youngest in there.  How would my older compadres cope in such an interrogation?  Then I twigged it.  I was at fault because I was individual.  My older compadres fitted neatly into their boxes for glaucoma, cataracts, you name it.  They could be sorted.  Me?  Well I was way too individual for that.

I smiled and thought of one of my favourite films, Life of Brian.  Brian, somehow becomes seen as The Messiah.  In one scene, he opens his curtains, walks onto his balcony, fully naked, only to be greeted by a mob of people shouting “Messiah! Messiah!” Once he has put his clothes on, Brian confronts them telling them that they are all individuals and should believe what they want to believe and not follow him.  The crowd chant back what he says.  His message gets lost and the crowd begin following him wherever he goes.

I felt a bit like Brian with that doctor.  I was trying to tell the doctor my individual condition.  She was repeating it back to me but not really listening.  She was trying to find a nice comfortable box to put me in so that she would know what to do.

It’s very easy to label and box people.  It happens all the time and our tick box culture does not help.  Listening is such a powerful skill and is rarely used.  Patients aren’t listened to.  Parents aren’t listened to.  Children and teenagers aren’t listened to.  Doctors and nurses aren’t listened to.  Sadly, the list gets ever longer.

I finally saw Alana.  She was happy.  My ulcer was smaller, and she prescribed some weaker antibiotics.  I also a week off from going to the eye clinic.  Things were looking up.

The Football Mafia

The Sopranos must be nearly twenty years old, but it’s still fantastic. Due to a wash out Easter, we have started rewatching it. The last episode we watched saw Tony’s son, AJ, finally realising what his dad did for a living.

“Come on AJ,” said sister, Meadow, “why do you think we have so many uncles that we aren’t related to?”

That made me think. Hang on. I had quite a few uncles that I wasn’t related to either. Welcome my friends, to the football mafia.

To say my dad likes football is a gross understatement. It’s his life. Growing up, it dominated our lives. I remember going to a sleepover at one of my friend’s houses when I was about thirteen or fourteen. Her dad didn’t get out of bed until midday on the Sunday. By midday on a Sunday my dad would have already had a fried breakfast, played a football match, be showered and propping up the bar. That was a normal Sunday in our household.

What strikes a chord with my dad playing football and The Sopranos is the team around them. Tony’s right hand man is Silvo. He’s always well turned out in the best Italian suits. When Christopher, Tony’s nephew, steals a lorry containing Italian designer suits, Silv tries on a takes a couple for himself. There would always be someone like Silv propping up bar with dad. Always immaculately dressed hoping that the hockey girls were around.

Another one of Tony’s crew who I can relate to is Paulie. When Paulie is hunting down a hood, who works in a Starbucks, he laments the exploitation of Italian culture.

“First they destroy pizza, now coffee. Is nothing sacred?”

This reminds me of my dad’s mates lamenting about the state of English football, especially the mega bucks of the Premier League.

Meadow and Tony’s relationship in The Sopranos, early on anyway, reminds me a lot of my sister’s and my relationship with my dad. Lots of mickey taking and plenty of laughter. A big deal is made of banter nowadays but we, as a family, have been doing it for decades.

Football has changed completely since when my dad was playing. While I was in chemo, I read John Hartson’s autobiography. Hartson’s story is quite amazing. He played his football just when the big bucks started to roll into the Premier League. Like many of the players at the time, it went to his head. He became arrogant and aggressive on the pitch and developed a nasty gambling habit.

Then in 2009, he was diagnosed with testicular cancer. They later found that it spread to his brain. He describes being in A&E and vomiting up  black liquid. Never a good sign that. About a quarter of the book is narrated by his wife because he was in a coma for most of the time. Most people who have breast cancer have about six sessions of chemo. I had eighteen, which is quite a lot. Hartson had thirty five. That’s hardcore. Yet he’s still here. He’s a pundit now and you would never know.

I’m quite optimistic about English football. Now there seems to be a more professional edge. Gone is the steak and chips before a game culture that Hartson was probably the last of and in its place are spreadsheets analysing each players performance and how it can be improved. The players seem a lot more savvy and although they all aren’t angels, there seems to less sordid tales of wanton behaviour that was regular fodder for the tabloids.

The managers have a lot to do with it. When Arsene Wenger joined Arsenal, Hartson admits he knew his days were numbered. Wenger has been surpassed by managers such as Jurgen Klopp and Pep Guardiola who have taken this approach to the next level.

Although this has happened in the footballing world, I can’t really say if the same is true in organized crime. Technology is changing our world and you can’t help thinking that Tony Soprano’s days are numbered. But hey what ya gonna do about it?

The Beastie Boys

When you move in someone, however as much as you try to avoid it, you are subjected to that other person’s taste in music.  I met my husband in the Czech Republic.  We both went out there to teach English.  I shared a flat with my husband and our differing tastes in music was a cause of mild mickey taking.  I was 22 at the time and a complete Britpop devotee.  Blur, Pulp, Oasis, you name it.  If it had the word Britpop attached to it, I probably liked it. My husband couldn’t bear Britpop.  He liked his music a bit rough around the edges.  Mudhoney, Faith No More, Motorhead were more his bag, As I was the owner of the twin cassette stereo at the time, I had priority at first, my husband grimacing.  Over time we reached an arrangement where would have to listen to an albums worth of the other person’s music and then swap.  Occasionally my husband would overstep the mark like on the when he decided to play Slayer at volume 11 at 7am one Sunday morning, but overall, we obeyed these rules.

What was quite good about this was that every now and then I heard something in his music collection and he would hear something in mine, that we both liked.  This was true of The Beastie Boys.  I was a bit too young to fully appreciate The Beasties when they first landed.  They seemed to make good videos and had it in for Volkswagen drivers, but that aside, that was it.  My husband had two Beastie Boy albums, Paul’s Boutique and Ill Communication.  Both albums blew my mind.  Every now and then, a group comes around that completely embody where they are from.  The Beasties completely did that with New York.  They WERE New York.  Every song was a like a photo offering a snap shot of life in New York at the time.  Yes, they were rapping but the music they were rapping to changed constantly.  One minute it was big beats, the next bossa nova, then hard rock.  Everything you would hear if you walked down a street in Brooklyn at the time.

Fast forward to 2009 and we are debating whether to go and see the Beasties live.  I was about to book the tickets when the whole world tour was cancelled.  One of them had got cancer.  Bummer.  We shrugged it off and get on with our lives,

Then January 2011, I’m stuck in a traffic jam on the Nottingham ring road heading home after learning of my cancer diagnosis.  I’m on the phone to my sister.

She’s about to hang up when she says “Oh before I go, someone from the Beastie Boys has got the same cancer as you.  It might be worth looking up and see what he’s doing.”

I relay this to my husband.

“Cool…”

When we got home, I checked.  Adam Yauch aka MCA had indeed got salivary gland cancer.  He had undergone surgery and radiotherapy.  He was also following eastern medicine traditions and had gone on a vegan diet.  When I was diagnosed, he was very much alive.  For the first time I felt relief.

As time went by, I realised how rare my cancer was.  MCA was the only other person in the world I knew who had it.  I thought about contacting him.  I dismissed it.  What would a too cool for school New York rapper want to do with little old me in Nottingham?

Sadly, MCA died in 2012.  I remember people trying to avoid mentioning it to me because they knew how much faith I had in him still being on the planet.  I was gutted but I also got strength from it.  Strength to question my oncologists and doctors to find the right treatment for me.

When I was diagnosed it really annoyed me that cancer support was defined by the organ your cancer was in.  I have nothing against breast cancer support, prostate cancer support, bowel cancer support, lung cancer support and their ilk. But if cancer rears its ugly head in a weird place, it can be very isolating not only for the patient but also their family.  Thankfully the support networks have improved a lot since I was diagnosed seven years ago.  However, cancer is cancer.  It doesn’t matter where it is.  It’s still a bugger.