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…”

The Wright Stuff

The Wright Stuff, according to their website, is “a lively magazine show hosted by Matthew Wright”. Basically every weekday between 9.15 and 11.00, Matthew Wright along with a guest and two panellists discuss and debate various issues that are in the news on that current day.

I think that the Wright Stuff plays quite an important role on TV.  At school we used to have debates on anything and everything. They were really good fun.  They really taught you the importance of seeing both sides for an argument and because of this, I think made you a bit more empathetic towards your fellow citizens.  Now with such an emphasis on pass and success rates, I very much doubt that debating takes place in most state schools.  It probably still occurs in most private schools and this is quite a sad thing I think anyway.

This is where the Wright Stuff steps in.  Unlike Question Time, which is designed to debate mainly political issues with the Wright Stuff, pretty much anything goes.  I’m watching it at the moment and today the topics being discussed are Can You Choose You Gender? Brooklyn Beckham – Hot, Legal? He’s Still A Child! Halloween Horror – Bad Taste Biscuit about biscuits being sold in hospital with “I’m a Goner” written on them and as it’s Friday, the TV review with Kevin O’Sullivan.

The topics are first debated with the guest of the day and the panellists.  Then after 5 minutes or so the Great British public are the called upon to deliver their verdicts.  On today’s episode the guest of the day is another journalist called Matt Barbett.  He’s promoting a new Saturday morning show he’s on.  It sounds a bit like a watered down version of the Wright Stuff, but without the audience participation.  He’s a bit prepared for anarchic nature of the Wright Stuff and the fact that he will be asked his opinion, about the most bizarre topics imaginable.  I’ve seen other episodes, especially with American guests, where the guests go on, thinking it’s a normal chat show where they are flogging their wears and then look horrified when Matthew is demanding to know their stance on Putin’s bombing of Syria.

The highlight of the show, in my opinion anyway, is the paper review.  This happens every episode normally at about 10 o’clock.  Sometimes the guests are so bedazzled by this, they just read the headlines and it’s left to Matthew and the panellists to fill in the gaps.  Other times the guests get a bit too involved and poor Matthew has to pick up the pieces where they might have caused offence or possibly libelled someone.

As its Friday. I’m extra happy because it means that we also have the TV review with Kevin O’Sullivan.  Kevin must be an old journalist friend of Matthew’s from his Daily Mirror days.  He has the look of a tabloid hack and reminds me of a cut price Simon Cowell.  He always wears the same clothing as Cowell, a white shirt that has the two top buttons undone, unlike Matthew, who is always suited and booted.  The only difference between him and Cowell is his hair, which is in a 90’s curtain style, unlike Cowell’s well sculpted do.  However despite his appearance, he does know his telly.  He’s pretty much spot on about what is good and what isn’t.  I actually think he is quite refreshing as he says pretty much what he thinks and Matthew on the whole, actually listens to him, which sadly can’t be said for some of the callers into the show.

Matthew’s treatment of the callers into his show can be a little schizophrenic to put it mildly.  Sometimes he is very sympathetic, even if they hold a view different to his own.  At other times he can have a complete go at them, even if their only mistake wasn’t answering to their name straightaway when Matthew asks for their opinion.  Part of the reason for this schizophrenic attitude could be down to schreechy woman.  Schreechy woman is probably a producer or a director on the Wright Stuff who is schreeching through Matthew’s ear piece telling him what to do next.  She is probably either telling him to keep the caller talking or telling him to get the caller to shut up hence the schizophrenic attitude.   Strangely I have quite a bit in common with schreechy.  The first is that we were both Gamesmakers for the 2012 Olympics.  Many of the stories she relayed to Matthew at the time, were very similar to mine which was a bit odd.  Also quite often I’ll be thinking of a counter argument while watching a debate on the Wright Stuff only to hear Matthew say “ I’ve just hear from schreechy that…” and she would have said the same thing.

Another weird thing is that Matthew is very similar to my husband.  Both like heavy metal music especially from the 70’s.  Matthew is a massive Hawkwind fan and my husband is a big Motorhead fan.  Anyone who knows anything about 70’s rock will know that the two bands are connected.  Lemmy, who is the infamous lead singer of Motorhead, used to be the bass player in Hawkwind.  In fact my husband is partial to a bit a Hawkwind, when the mood takes him.  Matthew also comes across as someone who doesn’t suffer fools gladly and that if you are in an argument with him, just give up.  This is because he will always probably be right and it takes a lot to dissuade him otherwise.  My husband is exactly the same and will often start a discussion with the phrase “Remember now I am always right…” at which point I cease arguing because there is no point in persuading him otherwise.

I think this is why the Wright Stuff appeals to me.  I think in a weird way that Matthew is like my husband and I am like schreechy, trying to keep him on the straight and narrow by yelling in his ear.  It does sound a bit odd but I think that most relationships do operate on a similar basis.  One half of any couple is often more sociable, opinionated, dysfunctional, irritating (delete as appropriate) than the other and it’s up to the other half to help reign that aspect in, especially when you are with others.  This aspect can work two ways and there are times where my husband is my schreechy and telling me gently that no, we don’t have time for you to sing Wuthering Heights for the fifth time on karaoke, Anna.  I guess it’s kind of filling in the role or a parent by setting boundaries for one another.  It’s when this role becomes too restricted for the other half and this behaviour can be seen as controlling, that problems start occurring.

I’m often asked when I talk about my diagnosis and treatment, “So how did your husband take it?”  It’s a really difficult question to answer.  Firstly I sadly do not possess any telepathy qualities so I am unable to read his mind, something of which I am quite grateful for.  Also I’m not too sure what is the correct way for a husband to respond when his wife is diagnosed with cancer, if there is one.  What works for one couple must surely work for them alone and not for others, you would think.

When we got home from the operation it was just me and my husband.  That was it. Obviously we do have families but they either lived over 200 miles away, were expecting the birth of their first child and generally had their own lives to get on with.  I’m not saying that on reflection, we would have liked more help.  In fact I think our relationship was strengthen by the fact that we had to rely on one another.  We are both very independent people.  The fact that we both met while working abroad, away from our families, meant I guess, was one reason why we were attracted to one another.

A couple of weeks after the op, I had my first appointment with Dr B, my oncologist.  Both myself and my husband were big fans of the medical drama House.  I remember joking with my husband that I was hoping that my oncologist would be Dr Wilson, House’s best friend.  That character was my only experience of oncologists up until that point.  This was better than some people and some of my friends didn’t even know what an oncologist was until I explained it to them.

We were called through and met Dr B who turned out to be a soft spoken Scottish woman.  She remarked how well I looked (mmmm) and then briefed me on what was going to happen next.

“Your next appointment will be a fitting for a head and neck mask.  They will make a mould for the mask using plaster of Paris.  When the mask is made, you will then have an appointment for a mask fitting.  Then they will lie you on the radiotherapy bench and check that the mask fits correctly.  They will also take a CT scan of this and maybe give you a tattoo on your chest, to make sure the mask alignment is correct.  You will then have an induction for your six week course of radiotherapy and you will be given your radiotherapy appointments.  You need to come to radiotherapy everyday for six weeks.  The sessions themselves last only for 10 minutes and are painless.  However over time you will suffer from very severe side effects.  This is because the radiation will be going straight to you head and neck and will destroy tissue not affected by cancer.  You will get mouth sores and find eating extremely painful.  You will also have burns on the left side of your face and neck.  We can give you medication to help you alleviate these side effects.  Any questions so far?”

I looked over to my husband.  He was nodding away.  I couldn’t quite take it all in. Masks?  Plaster of Paris? Tattoos? Painless?  Well at least that bit sounded good.

My husband then asked a question about pain medication, I think, but I was gone by that point.  They could have been discussing about running away together as far as I was concerned, it was that word painless.  The doctor had said it.  Painless.  Radiotherapy was going to be a doddle.

Doctors

I love Doctors.  It has to be one of my guilty pleasures in the daytime TV schedule.  It’s also something of a dark horse.  It has been on our screens for some 16 years now, yet aside from the terminally ill, the elderly and maternity leave mums, no one seems to have heard of it.  It seems to be taking a break from our TV screens to make way for the Olympics, but I hope it returns soon.

Doctor is a continuous serial drama (oh go on then… soap) that is set at a GP surgery in the fictional Birmingham suburb of Letherbridge.  The stories in Doctors normally follow two strands.  One strand will involve the doctors, nurses and receptionists at the doctors’ surgery.  All sorts has happened to them and compared to some soaps, it does have a very high turn around rate of staff.  Whether this is true of all GP surgeries, I have no idea, but I suspect that the death toll of staff at most GP surgeries may not be quite as high as those in Doctors.

The second strand involves the patients of the surgery.  Sometimes it is a bit like Casualty where they identify someone at the beginning and then they have some kind of medical incident that will then involve them having to visit the doctors’ surgery in Letherbridge in order for it to be resolved.

It’s this reason that I love Doctors.  They are not afraid of taking risks.  I have seen storylines involving child prostitution, domestic abuse, drug abuse, euthanasia, police brutality, anorexia, all at quarter to two in the afternoon.  My mum also loves Doctors and she told me that apparently a lot of new scriptwriters, directors and other TV crew use Doctors as a bit of a training ground.  This sometimes is quite clear to see as some episodes are dramatic masterpieces while others fall flat completely.  However, it’s this boldness that I like.  The two strands means that you have the excitement of a new story but the continuity of the characters from the surgery that somehow, holds it all together.  It can be a bit twee and middle class at times, but then again it is about a load of doctors, so that may not be too much of a surprise.  But the way that they often leave storylines opened ended with no full resolution at the end is often quite realistic, especially where health matters are concerned.

The day of the operation eventually rolled around. So there I was at eight o’clock in the morning on 19th January 2011, sitting on the edge of a bed while a nurse explained to me how a hospital gown operated.  She was mid-way through her preamble when an anaesthetist rushed in carrying a clip board.

“Urm… I’m sorry to interrupt, but we need you in surgery straightaway…”

The nurse looked a little startled and I was told to quickly get undressed and put the gown on immediately.

After I had done this and was sitting up, in the bed, the anaesthetist gingerly approached the bed.    He was quite short and stocky with a mane of dark hair and a beard.

“So Mrs Read, could you confirm your date of birth for me?”

I went through all the normal hospital protocol and he quickly ran through the precautions of the operation.  I signed the consent form and he drew on the left side of my face and neck to show where they were going to operate.  That was a bit reassuring.  Heaven forbid they actually take out my kidney by mistake.

A porter magically appeared and I was rushed, quite quickly, to the operating theatre. I was put to sleep and my last memory was looking at the clock in the anaesthetist’s room and it said a quarter to nine.

When I came round, back in my hospital room it was half past three.  Blimey.  It must have been a pretty big operation.  I generally felt OK if a little sore.  I always became aware of something protrubing from my neck.  I slowly turned my head to the left and saw two transparent tubes coming out of my neck.  I slowly began to sit upright on my bed, to see what the tubes were attached to.  They were attached to two small jars that looked a bit like milk bottles.  These milk bottles were sat in a little cage that looked a bit like a milk bottle carrier that you see milkmen use.  In the bottles, there was blood.  Mmmm.

About five minutes later a nurse came in to check my temperature, blood pressure and the amount of oxygen in my blood.

“Ah… you’re back in the land of the living I see..”

“Just about… what are these?” I said holding up the bottles in the cage.

“They are your drains.  When the blood reaches a certain level, we will remove them for you.”

“When will that be?”

“Well everyone’s a bit different, but probably not for a day or two…”

Great.  That meant no shower, going to the loo being a bit nightmare and not much sleep.  Still I was alive so that was a bonus.

Visiting time rolled around and although my parents, my sister and my husband all said how marvellous I looked, you got the distinct impression that they were a bit shocked.  It wasn’t until I nipped to the loo and saw a reflection of myself that I saw why.  I had a massive scar that started from my left shoulder and arched all the way round to behind my left ear.  However it was the left side of my face that was more shocking.  As the tumour had wrapped itself around one of my facial nerves, Mr C had to remove the nerve during the operation.  The result of this was that now, the left side of my face hung limp.  I tried to smile but it was only a half smile.  When I spoke, only the right side of my face moved so it looked a bit like an Elvis Presley lip curl. Ah huh huh.

I was mortified.  I knew that would be some facial changes but I wasn’t prepared for this.  When I came out of the bathroom, Mr C was there with his registrar laughing and joking with my parents.

“Ah there she is. How are you feeling?”

“What have you done? I can’t believe I look like this…”

The room became silent.

“Well from our perspective, the operation was a success.  It was a long one. You have been through quite a lot for today so it’s understandable that you feel a bit emotional.  I’ll pop in a see you tomorrow to see how you are…”

We chatted a bit more about the drains and then off he went, looking a bit emotional himself.

“Well love, we’ll leave you to it.  You’ve had a long day and we’ll come and see you tomorrow.”

And off my visitors went and I was left with two drains sticking out of my neck, trying to work out how to get some sleep.

A couple of days later I was discharged and ready to go home. I remember on the drive home, feeling completely detached from the world around me.  People were getting on with their lives and as it was a Saturday, that involved shopping.  As we pulled up at some traffic lights I was amazed by these ant like people busying themselves, hustling and bustling and for what?  A new colander from Wilko’s.  Some dog food.  A haircut.  Treats for the kids.  The normality of it all seemed so removed from me.  I was a little bit scared of it. Would I ever get back there?  Would I always be someone who had to be ferried somewhere like some precious cargo that could never be exposed to sunlight? It all seems a bit dramatic now and doubtless medication was clouding my judgement at the time.  But I knew, ever back then, life would never be the same again.

Escape to the Country

Escape to the country. I’ve always hated that programme. But I would remember this episode for a long, long time…

Escape to the country.  I’ve always hated that programme.  The idea behind it is that some couple suddenly decide that city life is so much strain for them that the only option for them is to move house and well, escape to the country.  Whether the country wants them or not…

I was watching this particular episode on a 20 inch TV, mounted high in a corner of the outpatient waiting room of the ENT department.  Someone had wisely had put the volume on mute so I was squinting at the subtitles, trying to follow Brian and Pauline’s odyssey into the “country”.  Then I noticed that a nurse had started puffing.

“For the last time… ANNA READ!”

Oooppss! I poked my husband awake in his ribs with my elbow and stood up.  The nurse took us both into a small white room.

“ We need to weigh you…”

“Why?”

She just shrugged.  I went on the scales and thank the Lord it was in kilograms.  I have never really understood kilograms. Anyway the scales said a number, the nurse wrote it down without any expression to say if the number was good or bad and off to the waiting room we returned.

“Grumble grumble…” grumbled my husband.

“What?”

“Oh nothing…”

“ANNA READ!”

My husband and I shuffled forward.

“Please… Sit here.  Mr C will call you”

This was said by a different nurse to the first.  She was holding a clipboard and gave us both a sympathetic smile.  We sat down on chairs that were in a line.

“It’s a bit like waiting to see the head master isn’t it?”

“ Well, we’ll probably be in and out quite quick as he said it was just a follow up didn’t he?”

“ Here’s hoping.  Chinese buffet in town later eh?”

The door opened.

“Ah… Anna.  Good to see you again.  Sorry about the delay.  Please come in…”

In we walked and Mr C directed me to a chair directly opposite him.  My husband was directed to a chair to my right.  It was at quite an awkward distance.  Just a bit too far away.  I looked up and along the back wall were one, two, three, four, five doctors.  Six if you count Mr C.  Standing behind my husband were three women.  Two were nurses, one of whom had told us where to sit, and another woman with short bobbed brown hair who was now holding the clipboard.

Mr C turned my chair in such a way that I could no longer see my husband, but now I could only see him.

“ I’m afraid it’s a carcinoma…”

Carcinoma?  Now where have I heard that word before?

I turned to my husband for some clarification and I noticed that he had stood up and was moving his chair closer to mine.  He then held my right hand very tightly.

Mr C carried on describing something very quickly and I could only pick up certain words.

“It’s in one of your salivary glands…”

“We need to operate…”

“ Six weeks of radiotherapy…”

But I was still struggling with carcinoma.  Then it dawned on me.  Hang about is that cancer?

So I asked Mr C:

“Is it cancer?”

“ Umm… yes, the full name for what you have is adenocarcinoma which started to form near your paratoid gland.  It’s quite rare and can be quite aggressive.”

That’s when I left myself.  It all started to feel that it wasn’t happening to me.  It felt like I was watching a film and that I was the lead actress.

“ So when will the operation be?” asked my husband while gripping onto my hand.

“Well…”

Then I noticed something about the five doctors lined up in front of me.  It looked like that Mr C was the most senior and then behind him was the next senior, all the way down to the junior doctor at the end.  The junior doctor gave me a “you are soooo brave!” kind of a smile.  I couldn’t see how I was brave.  I just had a tumour in my salivary gland that was all.

Mr C then produced a big diary looking book and dates were discussed.  Finally a date was agreed on and Mr C explained for a second time what was going to happen.

The first thing I would have is a PET scan to see if the cancer had spread.  After that I would have an operation to remove the tumour.  Then after that I would be referred to an oncologist and start six weeks of intense radiotherapy to remove any cancer cells that hadn’t been removed from the operation.

He then stood up and walked towards the women with the clipboard and brown bobbed hair.

“This is Melissa.  She is our cancer care nurse in the ENT department.  If you have any questions please discuss them with her and I’ll see you next week to discuss your PET scan results. I also need another blood sample from you…”

“ I’ll take it!” said the “you are soooo brave” junior doctor.

“OK have your bloods done and then come back to reception to see Melissa.”

We both thanked him and left the room with the junior doctor.  I whispered to my husband.

“ I didn’t catch the date of the operation.”

“It’s on 19th January.  My birthday remember?”

I gasped and squeezed my husband’s hand.  The start of the great escape had begun…