Chemo Pt 1 – The Beginning

We arrived at my chemo induction in good spirits.  I was going to be treated! Hurrah!  I checked in at reception. My husband and I made our way to the waiting room.  Like all waiting rooms connected with cancer it was packed.  There were people in there waiting for treatment as well as newbies like me, waiting for the induction.

Just as my husband arrived with a rather full milky coffee for me, a nurse appeared in the doorway and read out a series of names of which mine was included.  We squeezed passed the huddles and were shown into a room with about five rows of chairs in it, all facing a presentation screen.  There were about fifteen of us in the room and the nurse who had read our names out.

“Good morning everyone.  My name is Sue and I’m a chemotherapy nurse here on the Day case Chemotherapy Ward at City Hospital.  Today I will outline to you what will happen during your treatment with us.  Then I will see you one to one to talk about your specific treatment and answer any questions that you may have.  Ok, let me begin…”

She then began a presentation about chemotherapy in general.  I can’t really remember what she said as it all a bit general.  She did say that we would get a £70 voucher for a wig which sounded good.

After she finished the presentation, she then gave us the times for our one to one appointment.  Luckily I was the first one.  All the others filed out of the room to catch the end of Homes Under the Hammer and it was just me, my husband and Sue.

“So… Anna Read… I see that you are on Herceptin and Paclitaxel right?”

“Urm… yes.”

“Well your first appointment will be with us next Wednesday.  In that appointment, you will only receive the Herceptin but not the Paclitaxel.  The Herceptin takes 90 minutes to deliver and as it’s your first time you have to stay in the unit for six hours afterwards, in case you have a reaction to it.”

Six hours!!! I didn’t say this but nodded.

“The type of reaction is something that feels a bit like flu.  If you experience any of these symptoms you must tell a nurse immediately. Where do you work?”

I told her the name of the college.

“You can’t work at all during treatment.  The chemotherapy weakens your immune system so any coughs and colds that you could get could be extremely dangerous for you.  It’s vital that you monitor your temperature daily and if it gets too high phone this number immediate.”

She outlined my treatment further.  I would have the treatment weekly for 18 weeks.  I would have 6 weeks of treatment, then a break of two weeks, then a further six weeks, then another break and then the last round.  I would have to give blood for a blood test a couple of days before my treatment.  This would be to check that my body was still coping with the treatment.  I would see my oncologist once a week to check that everything was OK.  If I needed any further medication like anti sickness tablets, I was to let me oncologist know who would then add to my prescription.

Both my husband and I nodded.  It was a lot to take in. Although we knew all the facts, you can never prepare for it.  We bid our farewells to Sue and made our way to the reception desk.  My first appointment was made for 10am the following Wednesday.

Wednesday rolled around and soon I was stood in front of the receptionist ready for my first bout of Herceptin.  My husband came with me. We decided that he would wait until I was hooked up and then I would call him once it was finished.  If anyone was going to hang around for six hours, I would rather one of us do it rather than both of us.

I was called through and was hooked up quite quickly.  After my husband left, I got chatting to people next me.  It was a mother/daughter combo and the mother was receiving treatment for bowel cancer.  Her treatment was pretty epic.  She would have to be there for eight hours.  Blimey.  However, neither her nor her daughter seemed that bothered by it.  In fact, as it was the last week in November, they were both manically making Christmas cards and decorations.

“Chemo… It hasn’t been that bad has it love?” said the mother after finding out that it was my first time.

“I’ve been as fit as a fiddle.  It’s my last treatment in three weeks and I’ve even still got my hair…”she added while making pom pom baubles.

I smiled and looked around the room at the rest of the patients.  The lady opposite me sighed and shook her head as if disagreeing with the mother’s remarks.

After 90 minutes, my machine started bleeping and I was told to go back to the waiting room and stay there for six hours.  Lovely.  The six hours went past quite quickly as the waiting room was a fantastic place for people watching.  There were some people who reminded me of the Monty Python skit about Yorkshiremen who try and out do each other about how bad their situation is.  A typical conversation from these types would be as follows:

“I’ve been here since eight this morning for bloods, they can’t find my consultant so I’m stuck here not knowing if I’m going to have my treatment or not.”

“Can’t find your consultant?  You’re lucky.  We’ve been here since six this morning as his temperature went up.  Had bloods but we’ve only just found out that our consultant is on holiday so they are having to try and find his registrar…”

“Can’t find their registrar? You’re lucky…” And so on…

The next type of people would be the outwardly jolly people.  They would be wandering around with their machines, cracking jokes, making cups of tea and generally acting like that it having chemo was a completely normal thing to be doing on a Wednesday.  If you looked closer though, you could see that they seemed to be in some kind denial by the way they were calling out for people to recognise them for joking around.

The final type I noticed was the silent type.  There were either in a couple or just be the patient themselves.  They would quietly sit in the waiting room, reading a book or magazine.  You could tell that they were trying to block out what was happening around them.  Over time I would definitely evolve into the silent type.

When the six hours were finally up, I called my husband and went home.

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Breaking Bad

You cannot talk or write about TV and cancer and not mention Breaking Bad.  For the benefit for those who haven’t seen this superb series (like my parents) here is a brief outline of what happens.  We follow the life of Mr Walter White.  Walter lives in Albuquerque and is happily married to a beautiful wife called Skylar.  They currently have one son, Walt Jnr, who has cerebral palsy.

We join the White family as they are due to celebrate Walt’s 50th birthday. Walt works as a chemistry teacher in the local high school and as Skylar is pregnant with their second child. He takes a second job at a car wash, in order to save extra money for the new arrival.  During the first episode, we get a glimpse into Walt’s life and it’s clear that it’s a very downtrodden existence.  Although he is a good teacher, the extra work at the car wash, you can tell, destroys him.  The boss of the car wash is a horrible man.  He gives Walt all the awful jobs to do and you can see how demeaning it is to such a proud man like Walt.

Then Walt’s world changes.  Although he has been feeling tired and run down, he just assumes it’s down to the fact that he has two jobs.  However, a trip to the doctors and a follow up scan gives Walt the news that both him and his family cannot imagine.  He has lung cancer.  There are treatment options but it’ll cost.

After receiving the news, Walt then thinks of another way he can get the extra money, not only for the treatment, but also for his family.  He decides to use his chemistry knowledge to become a drug dealer by both manufacturing and distributing methamphetamine.  He has the manufacturing side covered, by raiding the school for supplies.  In order to help with the distribution side, he recruits a former pupil, Jessie Pinkham, to assist him in such matters.

The following five series follow Walt’s and Jessie’s descent into the drug underworld.  Unsurprisingly, things get a bit messy.  But what makes Breaking Bad stand apart is the change in personality in both Jessie and in Walt.  By series five, Walt is no longer Walt but the drug lord Heisenberg who is on America’s Most Wanted.  In one telling scene, Skylar confronts Walt in a storage container that is completely crammed full with money.  She tells Walt that they have enough money to last two lifetimes rather than one.  So why doesn’t he stop?  Walt is completely passive throughout the exchange.  He knows that he is now too far gone.  He can never go back to the old Walt.  He is now Heisenberg and relishes and devours the power that this now gives him.

I can identify a lot with Walt.  When I tell this to my friends and family, they seem to recoil in horror.  Although I’m not about to start cooking methamphetamine any time soon, I can identify with the change in personality.  Cancer changes you.  It makes you assess your life.  You become more assertive.  You see life with extra clarity.  You know what you want and definitely what you don’t want.

You also sadly realise that cancer is not something that is beaten.  Even if you have been cancer free for decades, it still has a hold over you.  With Walter White it gave him an excuse for him to indulge in his psychopathic tendencies.  For me it gave me clarity for how to alter my work life balance.  These are life changing decisions and cancer or any other life threatening condition, gives you a weird confidence to enact on this.

Buoyed by the extra confidence from my Olympic experience, I prepared my battle plan for returning to work.  All the meetings I had were very positive and by September 2012, everything seemed to be back to normal. Then one day I was having a rare thing in the teaching world which is a proper lunch break.  I was tucking into some salad when a piece of rocket got stuck in my throat and I started to choke.  There was no one else in the staff room. I was just about to bolt it and get some help when it magically dislodged itself and I was soon rasping for air.  It was a bit of a wake up call that mouth wasn’t opening as wide as it should which meant that I wasn’t chewing food properly. I was pretty determined that if and when I was going to die it would be of cancer, not some errant piece of salad.

So began a barrage of appointments at the Maxi Facial Clinic to see if anything could be done.  I had an x ray of my teeth taken.  However, my mouth wouldn’t open wide enough to fit the slide in behind my teeth.  The radiographer seemed to relish this challenge that had been set for him.  Soon he managed to butcher a children’s x ray slide so that it finally rested snuggly behind my teeth.

I met another consultant, Mr P, who was a very jolly chap.  He wasn’t keen on surgery.  He thought it would create more scar tissue which could make the problem even worse.  I was prescribed a weird clamp like device to put in my mouth to try and prise my mouth further apart.  Finally, it was decided that I should have an MRI to finally rule out surgery once and for all.

I went to get the results in the summer of 2013.  I went with my husband and we both felt pretty good.  I had survived a whole academic year and had upped my teaching load for the next academic year in September.  We were also going on a cruise of the Norwegian Fjords the following week.  So we were both completely dumb struck when Dr B showed us in and said….it’s back.

I actually refused to believe it.  My husband refused to believe it.  Dr B said that when she read the report, she actually went to see the senior radiologist to query it, because she didn’t believe.

She pulled the image on the computer screen.  There it was.  It had reoccurred in the same place.  It was no longer in my salivary gland but was at the base of my skull, right in the middle of my head. It was quite small.  The size of a pea, Dr B had said.

“Can we treat it?” asked my husband rather tentatively. We both remembered the conversation we had had with Dr B after the second course of radiotherapy.  She had very clearly said that if it reoccurred that would be it.  Adios amigo.

“Unfortunately no.  The bone in the centre of your skull, Anna, has had such a high dose of radiation, that it could cause you severe brain damage if you were to have any more.”

We were dumbfounded.  I think I must have told Dr B that we were going on a cruise.

“That’s marvellous! Look go on your cruise, and we can discuss all this afterwards.”

It seemed like a good idea, so we made an appointment back in her clinic the week after the cruise.

We had a great time on the cruise and it felt that we had left what was going on in the centre of my head, back at home.  The only time it was mentioned was when I was eating some peas.  I said it was quite weird that something so small was creating all these problems.

The cruise also gave us time to devise some kind of plan.  As Mr N had sought advice from his colleagues at the Royal Marsden in London and they had advocated the second round of radiotherapy, it made sense that we should seek them out and see what they had to say.

I ran this idea past Dr B.  To my amazement, she wasn’t keen.  She supported me wholeheartedly in going there, but she feared that their conclusions would be the same as her’s.

After a bit of to-ing and fro-ing, we finally managed to get an appointment to see Professor M at the Royal Marsden in Chelsea.  So I had gone up from doctors, to misters and now I had reached the pinnacle of professors.

There are two sites for the Royal Marsden hospital.  One is in Sutton in Surrey and the other is in Chelsea in west London.  My appointment was at the Chelsea one and for some reason my dad thought it would be a good idea to drive there.  This turned out to be a nightmare.  In the end, dad dropped me, mum and my sister off at the main entrance while he trawled the back streets of Chelsea, trying to find a parking space.

As we were in the private section, the reception area was quite plush.  There was free tea and coffee and an abundance of reading matter to peruse.  After about ten minutes, we were called through.  Still no sign of dad.  We sat in a big circular corner room that had three set of sash windows that poured light in.  Professor M stood up and we made our introductions.  He was quite young and reminded me a little of the comedian David Mitchell.  We just all sat down again when in entered a flustered dad.

“You drove!?!” said Professor M shaking his head.  It wasn’t a good start.

After we all calmed down a bit, he tapped on his computer and a photo of the inside of my head appeared on his computer screen.

It turned out to be good news.  There were things that could be done.  First he would test the tumour to see if there was anything chemically that could be done.

“Chemically?” asked my sister “We’ve always been told chemo wasn’t an option…”

“It may be.” Replied Professor M “It just depends on the tumour.”

If nothing chemically could be done, then I could have a course of further targeted radiotherapy.  However, this would be much more invasive.  The tumour would have to be a lot bigger and I would have to lose my left eye because the radiation damage to it would be too great.  I would also have to have the treatment at the Marsden which would mean staying at mum and dad’s for six weeks and commuting in.  We nodded solemnly.  Inside though we were all cock-a-hoop.  The man had a plan and that was all we wanted to hear.

I threw myself into work after the Marsden appointment to try and distract myself a bit from the seriousness of the situation.  I remember rushing off while in the middle of teaching to answer phone calls confirming follow up appointments.  It was becoming more of a nuisance to my everyday existence rather than a life or death matter.

Then one day an extremely important email dropped into the Junk Mail folder in my Hotmail account.

It was the news that we were dying to hear.  They had tested the tumour and found that it was HER 2 positive.  Basically a cancer tumour omits a whole load of proteins in order to replicate itself. One such protein is HER 2.  By being HER 2 positive, my tumour could be prevented from spreading by using chemical treatment.  This meant that although it wouldn’t get rid of the tumour completely, I could have chemotherapy to keep the tumour at bay.

I would also no longer be seeing Professor M at the Marsden.  Instead I would see Professor I who would then discuss the treatment with me further.

The next week me, my sister and my parents were all sat once again in the private clinic waiting room, awaiting our first appointment with Professor I. I seem to remember he was about fifteen minutes late, which annoyed my sister a bit.  Anyway we were called through to a small box room.  In the room there was a desk with a computer on it.  Opposite the desk was an examining table and a wash basin.  Squeezed into this room were myself, Professor I, my parents, my sister, a nurse and a registrar.  It was a tight fit I can tell you.  Professor I sat at the desk and I sat on a chair at one end of the desk.  Even though there were so many other people in the room Professor I focused purely on me.

“Ah… Mrs Read! Delighted to meet you.”  He said as he shook my hand.  It was hard to place an age on him but I would say that he was over fifty.  He had short, spikey white hair, big black rimmed glasses and a noticeable gap in his front teeth.  He was also charm personified.

He highlighted my treatment package.  Basically I would have eighteen sessions of chemo.  My chemo would consist of two drugs.  The first one would be a drug called Herceptin.  This drug contained the necessary chemicals to prevent the tumour from spreading.  The second drug would be Paclitaxel.  This was a standard chemo drug usually used in breast cancer.  The idea of using Paclitaxel was that it would make my tumour more receptive to the Herceptin.  After the eighteen sessions, I would carry on having just the Herceptin every three weeks.  I would be monitored every three months to check that the tumour was stable.  He stressed that eventually the Herceptin would stop working and then we would be back to square one.

“Would she need the treatment at the Marsden?” asked my sister.

The good news was that no; I could have the treatment in Nottingham.  We all breathed a sigh of relief.

“That’s fantastic!” I said “I know I’m seeing you privately today but could we revert to NHS funding as I’m funding this appointment myself.”

Professor I’s face dropped.

“Oh… I had assumed that Mr BUPA was paying for treatment.  That changes things entirely because I’m not too sure you’ll get the necessary funding for treatment.  Herceptin has got funding for breast cancer and I doubt that your trust will fund it for any other type of cancer.”

I felt that the rug had been pulled away from under us.  I can’t really remember much after that.  My sister was bombarding him with questions and the Professor’s jovial attitude before, turned somewhat sheepish.

“Who’s your oncologist in Nottingham?” he finally asked.

I told him Dr B’s name.

“Ah…Trudy! Yes, I know Trudy quite well.  Look, I’ll email her and let’s see if it’s possible…”

We then said our goodbyes but weirdly I felt quite optimistic.

The next day I got a called from Melissa.  She had made an appointment for me to see Dr B that following Thursday.  I carried on with work in the meantime and soon both myself and my husband were waiting for my name to be yelled out in the lovely ENT department.

It eventually was and we walked in to a beaming Dr B.  Apparently she had applied to the Cancer Drug Fund for funding for the proposed treatment, and it had been accepted!  This meant that I could have the treatment that Professor I had outlined in Nottingham.  There would be no awful commute to Chelsea every day.  I could have it and be able to collapse in the car and be whisked home.  An appointment had been made for my chemo induction in two weeks’ time. Crikey! That was quick!

The London 2012 Olympic Games

Then a completely wonderful, bizarre, tiring and fantastic experience happened to me.  That experience was London 2012 Olympic Games.  Now given the state of my health, you would be completely correct to assume that I wasn’t competing in the Games.  Not in the slightest believe you me.  At the end of 2010, before the meeting with Mr C, I had applied to be a Gamesmaker at the London 2012 Olympic Games.  My application was processed and weirdly, all the interviews, training days and other such meetings, all seemed to fit around my treatment and were at times when I was actually feeling quite well.

I then was allocated a team that I would be working in. That team was Protocol and Languages team.  I assumed that this was because that I was used to speaking to people who couldn’t speak much English.  I would probably be manning some information booth somewhere and be constantly telling people where the toilets were and other vital information.  My sister was very sceptical.

“It still could be doing the car parking you know…” Oh boy how wrong she was.

I had lucked out.  I had lucked out big time.  My role, I found out, would be looking after the Olympic Family.  For those of you not versed in Olympic vocab, for Olympic Family read VIP’s.  Basically my job would involve providing information to VIP’s and generally make sure that they were having a swell time.  What was most exciting was where I would be doing this.  On my initial application I had put Wimbledon as my first choice.  It was near mum and dad and I thought it was worth a punt, but that I would probably be based at the Olympic Park in Stratford. Oh no. I had been allocated Wimbledon.  So let’s rewind a little.  I was going to be in the VIP lounge of Wimbledon Lawn Tennis Club throughout the Olympics.  Holy moly…

As the time got nearer and nearer, the more nervous I was becoming.  I hadn’t told anyone about the cancer and was in a quandary on what to do.  People seemed quite divided on it and I dithered and dithered, which is something I’m quite good at.  Finally, it was the day before my first shift and I had an induction at Wimbledon to actually see what I would be doing.  There was a groups of about twenty of us all waiting on a baking hot day, in a room in Wimbledon HQ.

“Hi everyone I’m Sami and this is Leah and Amy.  We will be managing you during the Olympics but before we get onto what your roles will be, we’ll divide you up into three groups and show you around…”

I was in Sami’s group.  Sami seemed a nice fella.  He had been planning this for four years and had worked in Beijing during the 2008 Olympics.  Nothing intimidating there.  He led us down a non-descript corridor and up a flight of stairs.  The next moment we all realised that we were all standing in the Royal Box at Wimbledon.  Sami was explaining the seating arrangements but I don’t think anyone was listening.  After about five minutes, one of our crew chimed up.

“Urmm… I don’t suppose you mind if a take a photo?”

“No of course not…” And soon we were all snapping away.

After the Royal Box, Sami led us down some stairs and under the famous Rudyard Kipling quote that adorns the wall under which the players enter Centre Court.  My father in law had joked during the previous Wimbledon, that if I saw that staircase, I had to take a picture of it for him.  So I did.

We turned a corner and bang, we were on Centre Court itself. Sami said that we might have to come down here to accompany the VIP’s presenting the medals.  This was seriously getting ridiculous now.

Sami then took us back up the stairs, down the corridor and across a bridge to what was to be, the Olympic Family Lounge or VIP lounge to you and I.  We all sat down on some sofas in the lounge.

“Right I think you have details of you first shift so if there aren’t any questions, I’ll see you tomorrow.  I just need to speak to Anna Read but the rest of you can go…”

They all went and I was on the sofa with Sami.

“Now Anna as you are a Team Leader (yes I forgot to tell you, I was a Team Leader too!) you need to come a bit earlier than the other so we can meet up and discuss the arrangements for the day…”

I nodded. Tell him about the cancer!!! My brain was screaming at me.  But I couldn’t.  I think it was because that cancer had consumed the first six months of that year, I’d be buggered if I let it consume the second six months.  If I had told him about our relationship would completely change.  He would probably want to change my shifts and be constantly alert as to how I was doing.  I didn’t want to be a victim. I wanted to experience something that would never happen again in my lifetime and feel relatively normal while doing it.  So, I didn’t tell and just got ready for quite possibly, the best week of my life.

My week at Wimbledon flew past like a blur.  So many mad and unbelievable things happened that I don’t think I could recount them all.  As a team leader I was to be stationed in one place.  That place could either be in the corridor outside the Royal Box in Centre Court, by the VIP section in Number One Court, in the VIP lounge itself or by the VIP section in Number Two Court.  The other Gamesmakers rotated position every 20 minutes working their way from the car park right through to position 13, which was in the Royal Box itself.  My role was to make sure each rotation would revolve smoothly, cover any posts should a Gamesmaker want to nip to the loo or something and basically deal with any queries and problems should they arise.

Throughout the week I was mostly based in the lounge or at Number One Court.  I loved being at Number One Court because you could actually watch some of the tennis which was a bit of a bonus.  Plus, as people could only get to their seats during a change of ends, it gave you a bit of thinking time of where on earth you were going to seat a 10 strong crowd of Argentinian IOC members who were all dying to see their player, Juan Martin Del Piotro, when there were only four available seats.

The Lounge was quite fun too.  In there were mostly the fixers of the rich and famous who arranged for their clients to float through their time at Wimbledon with as little fuss as possible.  On the surface their job looked pretty much like the best job in the world.  It looked like they spent most of their time flying in and out of the most exclusive places on the planet securing the best possible service for their client.  However as one of my Gamesmaker colleagues was quick to point out that it was quite possibly the worse job in the world.  They would have to be at the beck and call of their paymaster and fulfil every whim, no matter how impractical it was.  He did have a point there…

Another thing about the Lounge was that both the food and the drink were free flowing.  We had quite a funny incident where, due a match over running, a deputy Prime Minister had rather enjoyed a bit too much hospitality and was slumped on the sofa all afternoon.  The poor translator had to try and wake him up to the meet the players afterwards which was a tad embarrassing!

It was quite demanding work as we were working shifts with an hour lunch.  I had no idea how my body would react to this but luckily it seemed to cope fine.  I learnt a hell of a lot about customer service and managing expectations.  We were dealing with some of the most privileged people on the planet.  However, there are only a set number of seats in the Royal Box.  If there was no seat available, they would have to wait.  Weirdly I found that the more powerful the person was, the more accepting they were of this situation.  It was the hanger on’s that normally had a fit.

Sami was quite possibly, the best manager I have ever had.  He seemed so relaxed given on his first day, he was told that Michelle Obama would be popping in.  What struck me was that he always had time to listen to us and solve any niggling little query no matter how petty it was.  The two things that I took away from the whole experience was the importance of listening and taking your time.  If you rush, you’re more likely to make mistakes and not resolve the issue in the first place.

Finally, the whole Gamesmaking experience gave me the confidence to go back to work.  I was feeling pretty low before I started my time at Wimbledon and my experience there taught that I did have the energy and the mental capacity to go back to teaching.  The final day at Wimbledon was quite possibly the best day of my life.  I was down for going to be in the lounge, but I swapped with another team leader to go to Number One Court.  This was actually a good move as the Lounge was packed and both the Team Leaders stationed there were struggling to find seats for everyone in Centre Court who wanted to see Andy Murray play Roger Federer in the Men’s Singles Final.

At Number One Court we had the third and fourth place final to see who would win the bronze medal.  That was between Novak Djokovic and Juan Martin Del Piotro.  It was quite quiet at first but then the Gamesmakers at Centre Court started sending over people to us as they were full and soon it began to get a bit chaotic.  Intermittently we would get up dates on the score board informing us that, incredibly, Andy Murray was in the lead.  Then suddenly we heard a huge cheer from Henman Hill.  Andy Murray had actually won!  Everyone started clapping and cheering in Number One Court.  Even Djokovic and Del Piotro looked quite chuffed.

Del Piotro won the game and after that match it was the women’s doubles third and fourth match.  About half way through the match we heard Henman Hill start singing the national anthem.  The players stopped playing and we all joined in on Number One Court, cheering at the end! It was coming to the end of my shift and my replacement arrived.  I quickly gave her my walkie talkie and updated her on any pressing issues and quickly made my way back to the lounge.

It was absolutely packed and I bundled my way through.  I looked up briefly at one point and saw Roger Federer on a balcony, proudly showing off his silver medal.  Oh my Lord!  This balcony was opposite the Lounge so if I got back quickly I could grab my phone and maybe get a photo of Andy Murray and his medal.  I tore up the stairs (bumping into Jeremy Hunt of all people!) and finally got to my bag and grabbed my phone.  I ran over to the balcony just in time to see the back of Andy Murray’s head as he showed off his medal.  I started to take some photos, but they were pretty rubbish. Oh well…and I started chatting to the team leader I had swapped with who had had a nightmare time in the Lounge, trying to placate big egos.

After about 20 minutes, Sami joined us and said that as it was our last shift, we could help ourselves to some of the VIP grub and, providing we had brought a change of top, which we all had, we could go and find a spare seat on Centre Court and watch the mixed doubles final, if we fancied like.  Urm… yes please!

So after a delicious meal, a group of about 20 of us trouped up and sat in seats just behind the Royal Box in Centre Court.  It was quite quiet as things were beginning to wind down after the excitement of the Men’s Final.  We saw the medal presentation for the Women’s Doubles which not surprisedly had gone to Serena and Venus Williams.  Behind us were some vocal Americans and I remember one of them saying “This is freaking Olympic tennis at freaking Wimbledon! It doesn’t get better than this!” and I think he had a point there!

We settled down for the Mixed Doubles.  Unbelievably this involved Andy Murray again alongside Laura Robson against two players from Belarus.  My dad is half Scottish and he gave me a Saltire to take with me “just in case”. So there we were.  A bunch of rowdy Gamesmakers who had just finished their last shift, whooping it up, waving a Scottish flag right behind the Royal Box!

Unfortunately, it wasn’t a double gold for Andy as the Belarussian pair beat them, much to the delight of the Belarussian party in front of us, who were giving us a good run for our money in the noise department! After the match had finished we decided to give the players a guard of honour as the came off the court and along the corridor behind the Royal Box to the locker rooms.

As we formed a line down the corridor, one of the Wimbledon staff told us not to expect much.  All the players were pretty knackered and might high five us but definitely do not expect any conversation or photos.  Fair enough.  True to this the Belarussian pair high fived us all the way down the corridor as did Laura Robson as they scuttled their way back to the safety of the locker room.  But where was Andy? We waited and waited…

After what felt like an hour, up rocked Andy.  He stood right in front of me.

“Urm…I wonder if you could hold this for me for a while?  It’s a bit heavy..”

He then handed me a medal.  I assumed it was the silver one that he just had been presented with.  Then I realised it was gold.  What the…I had to keep my cool. Everyone was going bananas next to me.

“Urm… thanks! You’re right. It is heavy…”

I looked up from the medal and I could see he was busy signing autographs for my Gamemaker buddies.  Make small talk Anna!  Make small talk!

“Urm… I guess you must be a bit tired after today…”

“Nah…” he said while still signing things.

“Would you mind…?” I said passing the medal to another Gamesmaker.

“Och no…do you want me to sign this?” he said pointing to my now redundant accreditation pass.

“Oh yes!” so he signed, got his medal back and slowly made his way to the locker room.

The whole thing took less than three minutes but it was the most unbelievable three minutes of my life.  When I told this story to my niece and nephew who were about 6 or 7 at the time, they said that they couldn’t tell anyone at school because they would never believe them.  So incredible was that experience that even now, it feels like a dream.  We had a Gamesmaker reunion in the December of that year and it felt like a therapy session.  This was because we had all been through something that was so magical and wonderful that no one who had been outside that experience would ever really understand what it was like.  Even though we only spent a week together, some of us are still firm friends and it’s nice to relive a little bit of it every time one of us is lucky to go to Wimbledon.

However, for me the confidence that I got from Gamesmaking helped to return to work.  Life had indeed changed but I was beginning to like my new normal, very much indeed!

 

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.

 

The Killing

 The Killing was one of the first dramas that became known as Nordic Noir, that was aired in Britain.  Basically the plot revolves around a killing of a Danish teenager and the subsequent police investigation into solving the murder. The main detective assigned to this is Sarah Lund (brilliantly played by Sophie Grabol) It becomes clear how emotionally involved with the case Lund becomes as it starts to absorb her life and her personal life suffers as a consequence. All the action takes place in Copenhagen and the plot twists and turns to involve pretty much all aspects of Danish life.  I felt quite smug about The Killing as I guessed who did it, quite early on, much to my husband’s annoyance.

The worldwide success of The Killing prompted a whole wrath of Nordic murder mystery dramas that soon drifted onto our shores.  The pick of the bunch has to be The Bridge, which, for me, surpasses The Killing.  The Bridge starts off on a bridge.  Basically the bridge that links Copenhagen with Malmo in Sweden.  In the first series a body is found on the bridge right on the Danish/Swedish border.  This means that both police forces become involved in solving the mystery.  In The Bridge, the detectives are much more well developed as characters, in my opinion than in The Killing.  The Swedish detective assigned onto the case is a female detective called Saga Noren.  It becomes quite clear early on that there is something not quite right with Saga.  She struggles with human interaction and it’s quite clear that she is slightly autistic.  She works on the case 24 hours and at times looks a bit like a robot in the way she deals with suspects.

Her Danish counterpart is the complete opposite.  His name is Martin Rohde.  If anything he is all too human.  He is married with about four children from various women.  In the course of the investigation he ends up sleeping with the widow of one of the victims.  However, he is likeable and is the complete opposite of Saga.  Yet he understands her and often bails her out in some of the awkward social situations she finds herself in.

Both dramas are quite similar in their production methods. The action seems to happen in the pitch dark and it’s normally pouring with rain.  Also it always seems to revolve a port, a car park or some dodgy looking industrial estate.  They are hardly adverts for the best that Copenhagen and Malmo have to offer.

It’s quite hard to define what the appeal of Nordic Noir is. I guess it’s partly due to how Sarah Lund, Saga Noren and Martin Rohde react to the increasingly horrific events that occur in the plot.  They react in such a professional and detached way that it seems on the outside that they are not affected by it at all. However, it’s only when the story focuses on their own personal lives that we see how much the detective work affects them.  This is more evident with Saga for whom the case is all consuming.  You get the impression with Saga that without her work, she would have no reason to exist.

The detectives in some Nordic Noirs remind me a little bit, of the various medical professionals that I have encountered.  On the surface they look like that everything is in control.  We have a plan and we will follow that plan to resolve this matter.  It’s when the plan doesn’t work that you can have a slight peak behind their professional mask.  Then you realise that actually they aren’t in control.  It’s what is inside your body that is controlling everything.  Sometimes they are helpless in what they can offer and that’s when their mask can sometimes slip.

The following week Dr B called.  This was a very rare thing.  Normally consultants have secretaries to do that kind of thing, so to have a consultant call you in person was a big deal.

“Urm… Hi Anna? Can you pop in and see me tomorrow morning in Oncology?  How about 10ish?”

I said that I could and immediately called my sister.  She was on maternity leave so was quite grateful for some grown up conversation.  I told her about my conversation with Dr B.

“Right I’m coming up…”

“What?!? Who’s going to look after Luke?”

“I’ll sort it. But I’m coming up as I think we need a few answers…”

So the next morning, we were sat in the waiting room in Oncology, with my sister drinking coffee by the mugfuls.

Dr B actually called us through in person, which again is another rarity as it’s normally the nurses who do the shouting.

She showed us to her office and she positioned the chairs so that she was sitting directly opposite me.

“Right… the reason I’ve called you in is that we’ve had some new information from the Royal Marsden…”

What had happened as, true to his word, Mr N had passed my CD onto his colleagues at the Royal Marsden.  They had come up with a plan.  The plan involved a second round of radiotherapy.  A more targeted form of radiotherapy.  The good news was that Nottingham had just installed a radiotherapy machine that could do the exact type of targeted radiotherapy that the Royal Marsden had recommended.  But Dr B wasn’t keen…

“I’m not too sure if your body, namely your head could cope with that extra radiation.  However it is quite common in the US and on the continent for patients to have two cycles of radiotherapy, so it may just work…”

We discussed the pros and cons and in the end decided to go for it.  The consent form was signed and radiotherapy round two, here we come!

A Place in the Sun

A Place in the Sun is yet another programme that I can’t get my head around.  It’s basically Escape to the Country but this this time the house hunters get to go abroad instead of trudging through the British countryside.  You can normally tell pretty early on if the house hunters are actually interested in buying anything, or just fancy a jolly away. A pretty typical give away is if they think every property that they are shown are simply marvellous and it’s their first visit to said location.  Why on earth would you buy a property if you have only found out where the place you are visiting actually is?  Also it’s pretty typical that the house hunters won’t be able to speak the lingo.  This means that any building work that the chilled, relaxed presenter will highlight that needs to be done would be doubly difficult to do once they have moved there.  I find it hard to communicate with British builders let alone with builders who can’t speak English.

Basically A Place in the Sun is escapist TV.  It’s set in stunning locations where the sun always shines and there’s a friendly bar full of jolly locals who are happy to see and help you. It is selling a dream and a lifestyle that very few of us can actually achieve.  When I had learnt that my cancer had reoccurred, it was so tempting to jack everything in, max out my credit cards and go on that travelling odyssey that I had always wanted to go on.

However, over time, reality hit. It’s all good going travelling, having amazing experiences and showing off on social media but there comes a time when you have to go home.  Everything in life is temporary.  Soon you need stability and time to really consider your options.  Flitting around everywhere is merely a distraction from what is really happening around you.  Friends and family provided this stability for me and time spent with them gave me the focus to consider my options.

So I’m all for a bit of escapism.  Who isn’t?  But you also need to prepare for when life slows down and ultimately it’s up to you and only you to make the next move.

The PET scan was just as efficient as before and about a week later, I was in the waiting room again, this time with my parents.  We were all stayed with some of my parents’ friends near Chesterfield.  The plan was to get the results and the spend a week with my aunt and uncle in Anglesey.  I stayed overnight in Chesterfield and I felt petrified.  I had this thing in my head that could trigger a stroke.  I was afraid of going to sleep in case I never woke up again.

As I was called through I noticed that Mr C was smiling.

“Good news! It hasn’t spread anywhere.  In fact, your head lit up like a Christmas tree…”

I felt a bit relived but I don’t think my parents felt it.  My dad asked a couple of questions and all I remember of the exchange is him shaking his head and saying:

“You’ve picked a right one here haven’t you love?”

He meant the cancer, not my husband…I hope.

After Mr C, we went to speak to another cancer support nurse called Ginta, as Melissa was on holiday.  Ginta was just as lovely as Melissa.  She talked about hospice care in such a way that it didn’t seem so terrifying after all.

After we saw Ginta we headed up to Anglesey.  It was just before Christmas and the weather was playing its part well. We drove through a snow storm in the Peaks, but we arrived in Anglesey in one piece.  My aunt and uncle were fab and kept us all busy.  I did get a bit emotional at times, but there was always a hug and a cup of tea to help me through it.  Mum had the idea that my husband and I should go on holiday somewhere.  After much debate, we decided on a Caribbean cruise.  My parents would pay for my ticket and my father in law would pay for my husbands.  There was no option. We would go on a Caribbean cruise whether we liked it or not.

So at the beginning of 2012, my husband and I found ourselves winging our way to Barbados. We were bit nervous as to how I would be on the seven-hour flight.  Would I faint?  Would my head explode?  Thankfully none of that happened.  As soon as the plane took off and I just felt relief.  I felt that I had left the cancer behind me in the UK and by God, I was going to have a good time!

The cruise was amazing and the Caribbean was a wonderful place.  When we came back, we both felt refreshed and energised.  Life was to be living and what will be, will be.

But after about a month, I found myself in a funny place mentally.  It felt a bit like limbo.  All I knew was that I was going to die soon.  I didn’t know when or what it would be like and this I struggled to get my head around.

Then one day my sister called with a strange proposal.

“Hi. It’s me.  I don’t know if you know but I heard from one of my colleagues that Mr N is in the country.  He’s a world famous brain surgeon and he’s based at Wimbledon Hospital.  Do you think it would be a good idea for him to look at your scans and see if there is anything that he could do?”

“Mmm… I don’t know.  Mr C seemed pretty adamant about it all.  Plus won’t we have to wait months for a referral?”

“We could go private.  It’s a one off and if we do that we could see him next week.  I think it’s worth doing as he’s not in the country for long…”

I was a bit emotionally detached from it all.  I felt I had some kind of morbid acceptance of the situation that I was now facing.  What was the point? All that fuss and he would probably say the same thing as Mr C anyway…

I was in a bit of a day dream when I snapped out of it to hear my sister say…

“So I’ll book it for next week and you just need to get your scans sorted.  I’ll text you the day and time.  See you, bye.” And she hung up.

A week later, my husband went to the QMC after work and picked up the precious CD containing my scans.  Then me, my sister and my parent were sitting in yet another packed waiting room awaiting the verdict.  After about twenty minutes a jolly looking receptionist shouted my name.  We were ushered into a rectangular room with a desk and a computer one side and an examination bed on the other.  At the far end of the room was a window and sitting in front of the window, by the desk was Mr N.  Mr N was how you would picture an extremely intelligent person.  He was quite tall and thin with his hair brushed back over his head.  He was wearing tortoise shell glasses and had a large hooked nose.  He looked quite similar to an owl or Professor Jaffle from Bagpuss.  He kindly shook all our hands and there was five minutes of confusion where we tried to find places for everyone to sit.

After we had all sat down, I handed over the precious disc and Mr N switched on his computer.  While he was waiting for it to warm up, my sister filled him in on the story so far.  He nodded while always keeping a beady eye on the computer.  Finally, it splurted into life.

“Bloody thing… it was a lot easier when scans were on film.  You could just hold them up to the light and see exactly what was wrong.  What did the brain surgeons in Nottingham say?”

I told him how they had say that they didn’t want to operate as it would be too dangerous.  The tumour was in a dangerous place and while they were operating, they could trigger a stroke from which I could never recover from.

“Mmmm…” said Mr N while clicking on his mouse.

He put the CD into the computer.  He clicked a few more times and then the image of my head appeared on the screen.  I held my breathe.

After about 10 seconds he delivered his verdict.

“I’m sorry to say this but I concur with the brain surgeons in Nottingham.  The location of the tumour is extremely problematic.  You would definitely have to lose your left eye and there is not guarantee that you would be you after the operation.  As it’s a cancer, do you mind if I keep hold of this and give it to some of my colleagues at the Royal Marsden to have a look?”

No, no was the answer we all chimed in unison.

“Very well then…” he said while standing up.

We took the hint and stood up too and bid our farewells.

“Urm.. where do we pay?” asked my mum nervously.

“Oh I never charge for second opinions.” Said Mr N. “Good luck Anna.”

That night I relayed the story to my husband.

“Well that’s a bugger isn’t it?”

Bizarrely I didn’t think it was.  I felt weirdly optimistic about it. I don’t know but I think for the first time I had hope.  I didn’t really have that before. I just felt in my gut that everything was going to be OK.  For the first time I felt a bit in charge of this.  I finally plucked up the courage and do some research about the type of cancer I had. The blinkers had now come off.  I was no longer detached from the process watching some weird film about a woman with cancer.  I was back in the room and in charge of my own destiny.  It might not look all that good, but boy, I was now ready for it so bring it on!

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.