Glastonbury

Yes, it’s that time of year again.  The indoctrination that everyone is having a truly fantastic, awesome, lifechanging experience on a farm in Somerset.  If the wall to wall coverage is anything to go by, we at home are missing out big time.  However, all is not what is seems at Worthy Farm.

I went to Glastonbury twenty years ago.  I had graduated from university so thought why not?  Getting tickets weren’t a problem.  They were £65.  I think I got them from a record shop in Leicester.  None of this photo ID and registration malarkey.  I went with my friend Sooze who fortunately, had a tent and camping experience.  So off we set on a chartered coach from Victoria Coach Station with high hopes.

When we got there, the security was quite tight.  The previous year a lot of gate crashers had climbed over the fence.  It got so bad that Michael Eavis had said that is the same thing happened at the next festival, he would scrap the thing altogether.  We had been told so we were on our best behaviour.

Once we were in the next question was where to camp?  I had no idea.  Thankfully Sooze decided upon a location that was on top of a slope, quite close to the loos and a five minute walk from some shops and food vans.  I wasn’t too happy about being so near to the loos, but we thought we would stay put for the night and maybe move in the morning.  As we settled down for the night we were unaware of the dark clouds arriving.

The next day we woke up to a quagmire.  It had rained all night and there was mud everywhere.  I had bought no boots as I had optimistically, packed sandals and factor 15.  My first mission was to acquire some wellies.  This was done at a premium and then we could survey the damage.  As we were at the top of the slope, our tent was still secure.  As we made our way down the slope towards the Pyramid stage, the worse the situation became.  Tents had been washed away.  There were people who only had the clothes that they had slept in and nothing else.  It was like a disaster zone.

This was a time before mobile phones so there was no way of letting loved ones know that we were fine.  Our parents had to rely on really startling news reports that were showing mud of biblical proportions and not much else. That first day was pretty grim.  We trudged to the Pyramid Stage.  The Other Stage had sunk, so all performances on that, were cancelled.  On the Pyramid Stage were The Levellers.  For a band who were named after a band of revolting peasants, they weren’t really showing much comradery with their common man.  They had Hawaiian shirts on and seemed to be taunting the crowd.  Mud was chucked at them.  The atmosphere changed to something quite dark.

“I think we should go…” said Sooze.

The Levellers finished their set.  Beck was on next.  I knew a bit about Beck but not much.  But he was a revelation.  As soon as he came on, the darkness lifted.  Beck is more than a musician, but an artist.  His performance include dance, DJing and music from every genre imaginable.  More crucially it reminded us why we were all there in the first place.

After that, the rest of the festival was amazing.  Radiohead were magical.  I’ll always remember watching No Surprises while fireworks were going off.  Not huge New Year Eve type fireworks, but little bursts of colour that matched the music perfectly.  We tried to go shopping for wet weather gear and ended up raving in a clothes shop, which can only happen at Glastonbury.  The decision to be near the loos was genius.  You could hear them being cleaned each morning so we could time our morning ablutions to perfection.  On the Saturday, we worked out we had stood for more than eleven hours solid. There was nowhere to sit because of the mud but we didn’t notice at all.

I nearly went again in 2011.  However, I was still suffering from the trauma of radiotherapy to be fit enough to go.  Although I regretted not going, nothing could ever better that awesome Glastonbury of 1997.

This Morning

The concept of daytime television in the UK only really got started in the 1980’s.  Before then it was assumed that the daytime audience mostly consisted of young mums with children, the old and infirm.  For that reason most of the programmes were either of the watch with mother variety or old war films.

In the 1980’s something odd happened.  It started with breakfast television.  There was Frank Bough and Selina Scott grinning awkwardly in dodgy jumpers.  They were quickly followed by a whole gang of serious journalist types on TV-am. They wrongly assumed that the British public wanted some gravitas over their Cornflakes.  They got it wrong completely.  The public wanted fluff and Roland Rat.

When breakfast TV finished at nine o’clock, there was an obvious gap.  So breakfast TV began to grow and eventually it spouted This Morning.  This Morning, when it first started, was of course, hosted by married couple Richard Madeley and Judy Finnegan.  It has now become a Goliath of daytime TV with an army of devoted fans.

I only really watched This Morning at university.  I loved to watch the phone in part of the show especially if it was with their resident agony aunt, Denise Robertson.

I remember one phone in that must have been about abusive relationships.  A caller started speaking quite cheerfully, only for the conversation to take a very sinister turn.  Through very gentle questioning, Denise managed to uncover that the caller had been locked in her bedroom by her husband.  She had been there since he left for work at eight in the morning and wouldn’t be let out until he returned from work at six in the evening.  Richard and Judy were gobsmacked.  Richard urged the woman to kick down the door and call the police.  Judy just went pale and started trembling.  Denise, however, was very very calm.  Looking directly down the camera, she told the caller that although she thought she was safe, she was in grave danger.  She listened intently to the caller throughout. Occasionally she told Richard to shut up, which is what the audience felt like doing on most occasions.  This strange stand-off ended with Denise making the caller see that the only option was to call the police and get rescued from her bedroom.  Both Richard and Judy as well as the audience who were watching, were in complete awe of Denise.  Denise Robertson. She was one of the lights that was brutally snuffed out in 2016.  On This Morning, she shone.

The thing about This Morning is that it will always be there on British television.  No executive would ever think of cancelling it as the outcry would be immense.  This is also true with cancer.  It is never ending.  Like This Morning, there are light hearted and even down right hilarious parts.  But there is also an element of darkness lurking just beneath the surface.

You soon realise that it never ends.  A couple of weeks ago I started getting double vision again.  I tried to ignore it.  No way.  Everything is just too perfect.  There’s no way my body is going to scupper this.

By now I’m programmed on what the course of action is.  I called Melissa.  Unfortunately she was on holiday.  I contacted Lindy.  Lindy was surprised to hear from me.  The last time I had spoken to her was four years ago, when things had seriously gone tits up.  She listened patiently and booked me in with Dr B.

I arrived in the ENT waiting room and saw four men staring slack jawed at the TV in the corner.  I turned to see what was on.  It was the snooker.  The gentle clicking of the balls had created a calm, relaxing atmosphere in the waiting room.  It had turned grown men into zombies.

After about ten minutes, a friendly looking registrar called me in.  Dr B was sat at the computer looking puzzled.

“Oh! Hello Anna.  Lovely to see you.  I’m a bit confused.”

I looked at her blankly.

“Oh! It’s NOT the tumour.  Don’t worry.  We examined your scans back to front.  It most definitely is NOT your tumour.”

I felt a lot lighter than I had done some five minutes ago.

“But that eye…”

“Oh God!” chipped in the registrar. “That needs seeing to.”

“Really? I mean if it’s not the tumour…”

That was the thing I was clinging on to.  It’s NOT the tumour!

“No, no! It certainly needs looking at.  If you don’t mind waiting Anna, I’ll see if someone at the eye clinic can look at it.”

I shrugged and was plonked on a seat outside.

About fifteen minutes later, Dr B came running up to me.  I jogged alongside her to the eye clinic.

The eye clinic is opposite the ENT clinic.  It’s about twice the size of the ENT clinic.  We jogged quietly down corridors until we found the woman we were searching for.  She didn’t look happy.

“Come, come.  Please sit down.”

I sat on a chair in front of a contraption.  This contraption was similar to the one at the opticians that you sit in front of when you are having your eyes tested.

“Please put your chin here…”

She made adjustments to the contraption so that it was clamped to the front of my face.  She shined a bright light into my left eye.  Then she tutted.

“You have an incomplete blink.  Your left eye isn’t closing properly.  As it can’t close, it can’t clean itself.  Now you have an ulcer in your left eye.  I’ll prescribe you some eye drops which you must take six times a day.  You must also take a steroid eye drop each morning and put some gel on your eye at night.”

Myself and Dr B listened carefully.

“What’s caused this?” asked Dr B.  The woman tutted again.

“More likely the surgery.  The muscles in left side of your face are beginning to sag.  This has affected the muscles around your eye too.”

“Not the radiotherapy?”

“Only in a minor way.”

Dr B looked a tad disappointed.

“It’s very important you come back here in two weeks.  We can review the situation then.”

The eye clinic reception was closed by the time we finished.  I was assured an appointment would be made for me in two weeks, where the final verdict would be made.  In the meantime I was spat out, left clutching my eye drop prescription, on the way to lovely pharmacy.

Radiotherapy Pt 2

A couple of months ago I read John Diamond’s memoir about his cancer experience. John Diamond was a journalist for The Times and was diagnosed with throat cancer.  As part of his treatment required his voice box to removed, John made the decision to document his cancer story through a series of weekly columns in The Times.  His description of how it felt to go through radiotherapy a second time really mirrored my experience.  For him, the second dose of radiotherapy was palliative.  John knew that he was going to die so the radiotherapy was being conducted “to improve his quality of life”.  A saying that medical practitioners are exceedingly fond of.

For me, the jury was out as it would be curative or palliative as no one really knew.  Anyway the way John described the attitude of the staff around him as he underwent his second course was spot on.  He describes when he went for the mask fitting, no jokes were cracked and there was a strange morbid atmosphere in the air.  This was the same for me.  At the first mask fitting, the technicians were behaving a bit like a comical double act, but now all that joviality had disappeared.  The plaster of Paris was applied in silence.  I lay on the table again for the fitting and numbers were solemnly exchanged.  The CT scan was quietly performed and measurements made.  When I came out of the fitting, I felt quite resigned to the fact that this was the end.  Nothing could be done.

I went to the appointment with Dr B just before starting the radiotherapy, feeling pretty low.  I think Dr B must have picked up on this.

“So how do you think the treatment will affect me?” I asked Dr B, fearful of the answer.

“It won’t be quite as evasive as the first as it’s going to be much more targeted.  I can show you the plan of action if that would help you?” she said.

“I guess it wouldn’t hurt…”

She took me out of her office into another room that had about ten computers in it.  She switched one on and after a few clicks an image appeared on the screen.  It was an odd image.  It looked like my head and through my head were a series of lines.  There were red lines, green lines and blue lines.  The red lines were passing straight through my head, coming out of my left eye.  They then turned green and finally blue the further away from the centre my head they became.

“That’s the path of radiation.  The red lines indicate high levels of radiation, the green are medium levels and the blue are low levels.  What you must understand Anna is that although it won’t be as evasive as the first cycle, you will still get side effects.  Sometimes these occur years after you finish the treatment.”

I nodded and I sort of understood the image that was in front of me.  But it was what she said that stuck.  The side effects would occur years after I finish treatment.  So it looks like I could live for years right?

At the end of our appointment, Dr B gave me a prescription for some steroids.  She wasn’t happy doing it but she thought it was a good idea, to beat any fatigue I might feel.  As anyone who has been on steroids will you, once you start taking them, life becomes a manic blur.  You develop a weird chipmunk look, with puffed up cheeks.  You even start acting like a chipmunk, scurrying away, doing household chores at 4 in the morning, repairing fence panels, going on 10 mile hikes and not breaking a sweat at all.

This steroid induced fuzz meant that I breezed through the radiotherapy.  Compared to my last course where everything seemed to slow down to an almost halt, this time I powered through.  I would turn up bright and breezy, slip on my gown, laugh and joke with the nurses while they got my mask ready and zap! It was all over and it was back home to the gardening. I felt good and had the feeling that this time, it could be working.

The six weeks flew by and my last session arrived.  My parents had come up for it and we rather overloaded the nurses with chocs to say thank you.  Not that they were complaining. We had to wait 5 weeks before an MRI to see if it had worked.  It was a bit nerve wracking but I was silently optimistic.

My appointment after the MRI came around.  Dr B actually came to the waiting room herself to call me in.

“Good news, good news, good news.” She muttered under her breath to me as we walked from the waiting room to her office.

And good news it was. Soon me, my husband, my parents and my soon to be pregnant for the second time sister all took our seats and started squinting at a computer screen.  On the screen was the inside of my head.  Most importantly, inside my head there were no white splodges.  No white splodges meant no tumours. No tumours meant no cancer.  I was disease free – again!

This time though, it felt good.  I felt good as the radiotherapy wasn’t quite as traumatic as the first round.  We could actually celebrate! I could make future plans!  I could reopen my pension! Life could go back to normal!  No more hospital appointments!

“Urmmm… I’d better pull you up on that one…” said Dr C.  I would need monitoring.  There would be scans but these would become less frequent the longer I survived.

“In the meantime, go and celebrate and I’ll see you in three months.” And celebrate we did.

 

Radiotherapy Pt 1 – The Outcome

About a month after I finished radiotherapy, we all went on a big family holiday to north Devon.  We all had a great time, until the very last day of the holiday.  I started getting really painful headaches.  I tried all manner of painkillers, but they weren’t doing the trick.  We eventually after a lot of faffing, got in contact with Melissa.  She arranged an appointment for me to see Dr C.

We drove back a bit earlier in quite a tense state. I had an MRI and a couple of days later me, my husband, my sister and my mum were sitting in the ENT waiting room to hear the results.  It was the first time my mum and sister had been there.  My mum especially was thoroughly confused by it all.

My name was called out by the nurse and I was weighed.

“Why were you weighed?” asked mum.

“I dunno… it’s something they always do.”

Mum looked puzzled, but before she could formulate a question, we were called through.  This time we sat in a line next to a door.

“This isn’t….”

“Good?” said my husband.

“Actually I would say nerve wracking.” Said my sister. “ You would think they would organise it in a better way…”

As we debated how they could do this better, Melissa magically appeared and called us in.

It wasn’t Dr C or Mr B that saw us. It was a nervy looking registrar.

“I’m afraid that both Dr C and Mr B are away on holiday at the moment.  I’ve had a look at your scan and it looks like you are disease free.”

“Does that mean it’s gone?” asked my sister.

“Urm… yes.  It says there is no evidence of disease…”

We all breathed a sigh of relief.

“But what about the pain?” I asked

“ I think that must be an after effect from the radiotherapy.  I can prescribe you some medication if you like.  What is the pain like?”

I outlined the types of pain that I was in.  It was a shooting, nerve pain running up the left side of my face.

“Ok…I’ll prescribe you a drug called Gabapentin.  That is good for nerve pain so hopefully it should do the trick.”

As we made our way out of the room, my nearest and dearest were cockahoop.  They were high fiving and talking of places to go to celebrate.  I however didn’t feel quite so jovial.  Something wasn’t quite right…

As summer rolled into autumn, I prepared to go back to work.  I had a meeting with my manager and decided to go down to working four days a week.  One of the classes I was assigned was an evening class which I was due to start after Christmas, once I had got back into the swing of things.

I started back just before the summer break which was quite a good time to return to work.  I initially didn’t do any teaching and was helping out in an admin role.  The summer break went by in a flash and soon I was sat in a classroom at the beginning of September listening to our Induction for the next academic year.

It all started so well.  We spend the first couple of weeks of every academic year interviewing and enrolling learners.  This went well and most of the classes filled up quickly.  It was when the teaching started that I began to feel a bit peculiar.  Basically I was knackered.  A whole day of teaching would completely wipe me out. I would get home, have a shower, have something to eat and then go to bed usually by eight o’clock.  The prospect of having to teach an evening class terrified me.  I would be asleep by break!

The tiredness you get with cancer is completely different to the tiredness that you usually feel.  It is energy sapping, fuzzy head making and eye drooping.  You feel it in your core.  No amount of coffee, energy drinks or supplements can tackle it. You just have to give in, however frustrated you may feel about it.

I was still getting really bad headaches, so Melissa booked appointment to see Mr C and soon I was being weighed in the ENT waiting room.  I had another MRI and was here for the results.

We walked in the room and my husband moved his chair closer to mine.

“It’s not good news.  The cancer has returned and has spread.  It’s gone up a nerve and has now formed a tumour at the base of your skull.  I’ve spoken to the neurosurgeons at the QMC and the have said that it is inoperable.  It’s very small but where it is located is the problem.  If we operate you would definitely lose your left eye and would more than likely have a stroke.  This would greatly affect your quality of life.  I’m going to book you in for another PET scan to check that the cancer hasn’t spread any further…”

Part of me felt relieved when I heard this.  I KNEW something was wrong! Aha! I was right! I felt like shouting.  I also felt like I had some justification on where to tell my manager to stick her evening class.

It was only when I looked at my husband that the reality started to hit.

“So… there’s absolutely nothing you can do?” asked my husband.

“Not surgically wise… no…”said Mr C.

“What about radiotherapy or chemo?” I asked.

“We don’t think the tumour would respond to chemo and as for radiotherapy, you have only just finished one cycle. It would be quite dangerous to make you anymore weaker.  It would greatly affect your quality of life.”

“So… how long have I got then?”

“We don’t really know but…why don’t you speak with Melissa?  I’m sure she can help you come to terms with this news.”

We thanked Mr C who gave us an appointment sheet to hand in to collect the PET scan results.  We then left with Melissa.

I can’t quite remember what we discussed with Melissa, as we were both in shock.  I remember phoning my dad afterwards and breaking down on the phone to him.  I think the reality of it all had began to have sunk in.  While we were stuck in traffic on the ring road my husband made quite a glib remark.

“Now’s the time to do anything that you want to do…have you ever thought about doing crack cocaine?  You’ve got nothing to lose you know!”

For which he received a thump on the arm.

Radiotherapy Part 1

Nothing and I mean nothing, can prepare you for the trauma of intense radiotherapy to your head and neck.  The first treatment went fine.  I was applying aqueous cream three times a day to the left side of my face and neck.  I was also using the mouth wash I was prescribed and it all seemed tickety boo.

It all started to hit the fan in week two.  My saliva started to become really gloopy.  I would need to spit out this gloop every ten to fifteen minutes.  My husband commandeered an old plastic bin from IKEA to act as a spittoon for me to flob in. It was never more than three feet away from me at all times.  Even now, when we go to IKEA, if I see those bins on display, I shudder a little.

A side effect of this gloop, would be that it would sometimes build up at the back of my mouth, and trigger my gag reflex.  So not only was I flobbing every ten minutes or so, but every so often I would be gagging too. Plus this was all happening twenty four hours a day. Nice.

I was also feeling tired to the point of exhaustion. I had painful sores in my mouth and I couldn’t open my mouth very wide due to the scar tissue from my surgery.  I also had an angry rash on the left hand side of my face that was basically a template of the mask, that was being fitted to my face day in and day.  All in all I wasn’t a pretty sight.

A typical day would be like this.  I would wake up at about half eight after an uncomfortable nights sleep due to the gloop that I had to spit out.  I would get up and use my mouth wash.  I would go downstairs, have some water and then make myself a bowl of Weetabix and mush it all up.  If I was feeling adventurous, I may add a banana to the mix.  I would then plonk myself down, with my spittoon and watch The Wright Stuff.

I would spend the whole of The Wright Stuff, some two and a bit hours, eating my Weetabix.  After breakfast I would normally have to go to the hospital for my treatment.  My husband would accompany as would the spittoon.  We would walk the length of the hospital to get to the radiotherapy department.  This was actually quite nice.  For some reason we used to joke around a bit.  One day my husband got hold off a wheelchair and was pretending to be Lewis Hamilton with it, driving me quite quickly down the long corridors to many a disapproving look.

Every Wednesday, usually after treatment, we would have to go to the new radiotherapy department for an appointment with Dr B, so she could see how I was getting on.  It didn’t help that this appointment was near to where the car park was, so we would have to zig zag back on ourselves to get there.  There was a little transporter thing, like you see at airports, that we could have taken, but we, especially my husband, preferred the Lewis Hamilton wheelchair method.

It was at these appointments I also saw a radiotherapy nurse and a dietician. Although there were nurses who delivered the treatment, this radiotherapy nurse was a bit like Melissa.  She was especially assigned to me and was lovely.  The dietician was equally lovely and quite helpful on giving suggestions on what to eat.

“Protein. Try and get as most protein as you can down you.  Eggs, cheese, meat… anything really.”

“What do you mean by anything?” asked my husband.

“I would go full fat on everything.  Put cream in your porridge.  Put butter on crumpets.  Anything to bulk you up.”

We nodded in unison.  On our way out, she gave a food diary for my husband to fill in, being the carer and all.

My husband took it rather briskly from her.

“Look… I want to make something clear.  I’m Anna’s husband NOT her carer.”

“And… I think I’m more than able to fill in this.” I added taking the diary away from my husband.

“I’m sorry…I just assumed…”

And we left it at that.

After my treatment, once we got back home, I would have a Complan.  Complan is a food substitute in the form of a milkshake.  It’s a bit like Slim Fast but you can make bigger quantities of it.  I was prescribed bottles of Fortisip.  I found these good for me, but I know of others who have had all manner of problems with them. My biggest problem with them was that they were too small.  If they were in litre sized bottles, rather than small cartons, I may have used them more.

Once I or my husband had made up the Complan, I would watch the news and Doctors, all while sipping the Complan.

After Doctors, I would go to sleep for a couple of hours.  I would wake at about four o’clock and then watch Escape to the Country or A Place in the Sun.

At around five o’clock, I would have another Weetabix/banana combination and settle down for the evening.  At around seven or eight, I would have another Complan and then go to bed at around ten. The next day I would repeat the whole process.

This went on like this for six weeks, and as you imagine for my husband, it wasn’t exactly a thrilling existence.  His main duties in all this was to ferry me to the hospital, make the occasional Complan or Weetabix, empty out the spittoon and picking up prescriptions. The prescriptions were for the mouth wash, the aqueous cream and all manners of pain relief, that I was consuming like nobody’s business.

I remember on one very bleak day, my husband telling me that my body was strong.  It could cope with the lack of food.  Six weeks compared to the rest of my life was a teeny tiny blip.  My body would cope and protect me from the chaos that was being thrown at it.  In the end it would come out stronger as a result.  I really took strength from this.

My husband also didn’t treat me as a patient in any way. I was still Anna.  We would bicker, he would tell me if I was in the wrong, we would laugh and joke.  We were essentially the same people.  The only difference was that I looked a bit odd, spat and slept more.

My husband also taught me to listen to my body. If I felt tired, go to sleep.  Don’t feel guilty.  You are not letting anyone down or missing out on anything.  Your body wants to rest, so let it rest.  If you are in pain, take painkillers.  Don’t try and struggle.  You are not admitting defeat if you take the pain killers.  The pain killers are there to relive pain so take them.

This direct approach worked really well with me as I am somewhat of a faffer.  I do faff over everything to such an extent, I am amazed that I am actually quite punctual.  I think it’s because that although I faff about making a decision, once I make a decision, that’s that and I plough ahead, regardless.  My husband taught me to cut back on the faff, and go for what I wanted to do or rather what my body wanted me to do.

Eventually the day of the last treatment rolled around.  My parents came up to visit to cheer my through.  My mum came up with an excellent idea to help me through the radiotherapy.  She made a box full of presents.  I was to open each present after each treatment I had.  It was a lovely thought and reinforced the thought that although my mum was some 200 miles away, she was thinking of me and willing me through the treatment.

As I walked down the corridor after finishing my last treatment, I could hear my parents and my husband cheering.  I smiled meekly and the nurse asked me if I wanted the mask that I had worn throughout it all. I said that I would and I could see that my mum wasn’t happy about that.

“Why on earth do you want to keep that?” she asked.

“I dunno really…” I replied weakly. “I met one woman who made her mask into a fruit bowl… Maybe we could do that?”

My husband squeezed my hand.

“Come on… lets get the hell outta here…”