A Tale of Two Hospital Appointments

 

The allotted hour had arrived.  I made sure that I was fully hydrated so that my veins were plump with blood ready for the taking.  I was called in by my oncologist and not a nurse.  So far, so good.

“So, Anna how can I help you?”

“Well it’s about the recommendations that the Christie advised?  Changing my treatment to an androgen based one?”

She looked at me blankly.

“You got the letter, right?”

She shook her head.  I sighed and gave her my copy to read.  It was an awkward five minutes.  The letter outlined things that she had probably never heard of.  I offered to leave the room and give her time to take it in.  She refused but left briefly to take a copy of it.  She was unsure.  Unsure of the funding for the androgen treatment.  She would need to contact the Christie for further information about that.  Mr Salivary Gland gave the impression that this wasn’t an issue, but she wasn’t so confident.  However, if it wasn’t an issue, she would be happy to oversee it. 

I left feeling really deflated.  I had built this appointment up and convinced myself that things would finally get going.  Instead I got a don’t call us, we’ll call you with a provisional appointment booked in three weeks’ time to discuss it further.  Humph.

Unbeknownst to me, at the same time this was happening, my seven-year-old nephew was wowing audiences in his end of year production, where he was playing Neil Armstrong.  Yes, that Neil Armstrong.  He of one small step and all that.  Best not to ask why.

This meant that my family, quite rightly, were absorbed by this performance and assumed that my appointment was just a procedural thing.  I sent them a text to which my Dad’s response of “Crikey” summed up the situation pretty well.  My sister, on the other hand, was quite positive.  We came up with a plan where I would email the Christie and explain the situation.  I would also say that I would be happy to have the treatment in Manchester if it was definitely a no go in Nottingham.

One appointment down, one to go.  The second one was with a speech therapist and a dietician.  My speech and swallowing have got a lot worse in recent weeks.  Although I can swallow liquids, when it comes to food, it backs up in my throat, causing me to gag.  This means that eating anything takes me twice as long as it normally does.  The upshot to this is that now I can fit into a pair of jeans I couldn’t three years ago, but it is draining and affecting my energy levels.

Rather embarrassingly I was slightly late for the appointment. However, this was shrugged away, and we got going.  Apparently, my soft palate isn’t functioning that well.  I was taught some simple exercises, such as holding my nose when I swallow and given a load of liquid supplements to fortify my diet. overall the appointment was really positive.  I left feeling a lot more in control of the situation.  Maybe my sister was right.  Things weren’t that bad after all.

 

 

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Wimbledon

Wimbledon has always been special to our family.  I used to queue up as a teenager on its opening day to get an outside court ticket and have a gawp.  Then in 2012, I was lucky enough to be a Gamesmaker there and had a brief experience of seeing how it all operated behind the scenes.  Every year my parents, my sister and I enter the public ballot for tickets.  We are usually lucky and normally one of us gets something. This year my sister hit the jackpot.  She got a pair of Centre Court tickets, to the left of the umpire on the first Friday of the first week.  Then my appointment with Mr Salivary Gland came through.  When was it? Yep. The very same day as the Wimbledon tickets.  Talk about Sod’s Law.

A decision had to be made.  So, after a lot of faffing, my Dad and sister would come up to Manchester.  My mum would go to Wimbledon with her tennis pal Joan, as a bit of distraction therapy. Premier Inns were booked, and alarm clocks set for an early start through the Peak District.  The allotted day arrived, and we convened in the pub next to the Premier Inn in West Didsbury to discuss our plan of action.

The Christie is set in a nice suburb of Manchester.  It’s quite hidden away as we discovered while walking amongst the bins, trying to find the main entrance.  When we finally did, we walked down the longest corridor ever to Department No 1.  There we were sent upstairs to a white, bright reception area with comfy chairs.  Soon we were called through by a cheery nurse called Sandra.  Sandra was great and said it was a good thing I had a support crew with me.  She took my temperature and blood pressure with a musical blood pressure machine.  She also took my weight and height.  She left, and the wait began.

First to come in was Mr Salivary Glands registrar who was also a GP.  He took the most detailed history of my cancer that I have ever given.  It’s such a long story that I’ve grown used to editing it.  Between the four of us, we gave him a comprehensive tale of woe. He disappeared to report it all to Mr Salivary Gland.

More waiting. And waiting. My Dad and my husband had just started debating what rugby position the GP/registrar might pay in, when in swept Mr Salivary Gland.  He was young and very dapper.  He spoke quickly and concisely.  Even though he was talking about very technical issues, he worded it in such a way that we could all follow what was going on.

There were going to perform two tests on my tumour.  In the first one they would send a sample of the tumour to Texas to test for certain genetic markers.  If that came up trumps, there was a targeted drug I could take.  However, the success rate of this was less than 10%.  This was the Golden Ticket test.

The second test would take place in Manchester.  As this was looking for more markers, the success rate of this was higher.  The drug was a little less targeted but could do the job.  Also, there was a chance that I could have the treatment in Nottingham rather than Manchester.

If neither test proved fruitful, there was a generic immunotherapy drug that I could have in Manchester.  This was the suck and see option.  However, Mr Salivary Gland seemed to think that the Manchester test option might be the one that would come up trumps.

The problem with genetic tests is that they take time.  Both tests would take six weeks for the results to come through.  We told him about the problems I was having eating and with my right eye, with the lid closing.  He listened carefully and, on the hoof, came up with a solution.

As well as testing HER2 positive, my tumour was also receptive to androgens that are used in the treatment of prostate cancer.  He would write to Nottingham and ask them to switch my treatment asap to androgens rather than Herceptin.  He didn’t seem to think that this would be an issue and if it was, chemo was another option.  I sighed.  He smiled.  He said he would strongly urge them to use the androgens and not chemo.  I smiled.

I was an awful lot to take in but weirdly we all did.  It was only when I was relaying this conversation to my husband’s mate, Dan, that I realised how much as a family, we had all learnt about cancer treatments.

Appointments were made.  I would come back in three months’ time by when, we would know the results of the tests and how the androgen therapy was working.  All I had to do now was make an appointment with my oncologist for a week on Tuesday to sort out the switch in treatment, that should be simple enough shouldn’t it?

The I – Word

As the end of the academic year approaches, I’ve had to pop into work. Every student who completes an exam has their name inserted in the all-important claim spreadsheet.  As I left in rather a hurry in May, I had a sneaky suspicion that although my students’ names were entered, their outcome, if they passed or failed, may not have been.  So, I needed to pop in to ensure that this all-important spreadsheet was present and correct.

Although I was looking forward to catching up with my fantastic colleagues, I was approaching the day with a heavy heart.  Being at work seems a lifetime away. I was bound to get emotional about it.  I was also going to take a mental note how many times I would hear the word inspiration or inspiring.

I’ve been having a problem with those two words as I don’t feel either in any way.  When someone says this to me, I have no idea how to respond.  If I say well yes, thank you of course I’m an inspiration, I sound like a complete knobhead.  Yet if I do the opposite and contest it, it makes the person who said it feel awful and once again you look like a knobhead.

I’ve never been good at compliments at the best of times, but these two words do leave me speechless.  I remember reading about the para athlete Hannah Cockroft taking issue with some BBC reporter about it.  I couldn’t find the interview, but I found a great outlook on it by another para athlete Richard Whitehead.

I’ve seen Richard Whitehead.  A couple of years my mum and I volunteered to be happy clappers at mile twenty-five of the London Marathon for Macmillan.  It was a great day, standing on the London Embankment in the sun, cheering away.  Most of the runners by mile twenty-five were in a bit of a bad state, quite understandably.  However, when Richard ran by, he was as fresh as a daisy.  Richard has both his legs amputated above the knee.  This means that he doesn’t wear the blade type prosthetics but ones that are completely solid.  To see him breeze by so easily was …well… inspirational.

Richard believes that if he can inspire people to do things, then he’s happy about being called inspirational.  I can see this point of view.  Yet I can’t see how I am an inspiration.  Richard and Hannah work hard and do something.  At the moment, I am doing nothing.  I am just ill and getting on with my life the best I can.  However, something happened a couple of weeks ago that made me question this.  My story was published in the Maggie’s Centre in house magazine.  A woman I had never met before, read my story and told me that after reading it, she plucked up the courage to go and get a second opinion about her cancer.  So, if in a little way if I can inspire people to ask more questions about their lives and how they live them, then that is a good thing.

Lead, Follow or F*** Off

 

My husband is a man of few words.  When he does speak those words tend to be of the Anglo Saxon variety.  While talking about how others  should react to our current predicament, he summed it up pretty well.  They should either lead, follow or f*** off.

Fortunately most of my family and friends fall into the second category.  The support we have received has been so immense that I can get quite emotional about it.  No one has entered the third category which I know isn’t the case for some people living with cancer.  However there is one person who is firmly in the first category. She has led the way throughout this whole ordeal and that’s my sister.

When you look at me and my sister, you can tell we are sisters.  We have the same hair, eye and skin colouring.  My sister is petite and sporty looking while I am taller and a bit chunkier.  We share the same sense of humour and on the whole we have always got on pretty well.

How we differ is in our outlook on life.  I’m quite laid back on the whole and take a general que sera outlook on the world.  My sister questions everything.  Why are you doing that?  How did you get here?  Why don’t you want an ice cream?  It goes on and on.

My sister is far more scientific and logical than I am.  She studied physiotherapy, stayed at home and got a good, steady job as a physiotherapist.  I studied Politics, went 150 miles away to Leicester Uni, got drunk quite a lot, taught abroad for a couple of years before somehow landing in Nottingham and getting a job at a Further Education college teaching English as a Second Language. Yet she has saved my life twice.

The first time was when I had a nagging toothache and earache which the antibiotics from the GP weren’t doing anything for.  She kept pushing and pushing until finally I went to see Mr C privately and eventually got diagnosed.  I’ll never forget her first encounter with Mr C.  She was six months pregnant with my nephew at the time.  Mr C smarmed into the room where she proceeded to interrogate the life out of him.  You could see he was wondering who on earth this slightly manic pregnant woman was.

The second time she saved my life was when I had my first reoccurance.  The news knocked us all for six.  My husband and I went on a Caribbean cruise during which I reached some kind of acceptance of the situation.  I started to think of plans and made a will for the inevitable to happen.  But my sister refused to accept this.  She managed to organise an appointment for me to see one of the best brain surgeons in the country.  It was a nightmare trying to get scans, blood work and other stuff all together in a matter of days,  Somehow it all came together.  The conclusion?  Although an operation was out of the question, he would pass my notes onto the Royal Marsden.  A couple of days later I had a call from my oncologist.  They were prepared to give me a second round of radiotherapy thanks to the intervention from the Marsden. This meant that when the cancer reoccurred again a year later, we knew to go straight to the Marsden.

I have learnt a lot from my sister.  I now take control over everything to do with my cancer.  I get scan reports, histology reports, everything.  Although you are powerless over the disease itself, there are some areas you can control.  I feel very lucky to have my sister constantly questioning everything.  It can be irritating at times but you know it’s for the best.  When my letter from the Christie came through, I popped down to see my family and watch the football.  I showed my parents the letter but halfway down on the A3 to her house, I realised I had forgotten to take the letter to show my sister.

“Don’t mention it to her.” advised Dad.

As soon as we got there and I had a cup of tea in my hand.

“So let’s have a look at this letter then…”

Rumbled.

IKEA Meatballs

News this week is that eating has become a thing. My days of wolfing food down like no tomorrow seems to be temporarily on hold. This is quite difficult when your husband regularly consumes half a cow every time we eat out. However we’ve decided to do our own thing food wise and so far it seems to be working.
The novelty of not working is beginning to wear a bit thin, living in limbo land. However every now and then you get a fist pump moment. As we both work, we have a dog walker, Nigel, who walks the hound for an hour over lunchtime. We decided to keep him on, despite me not working, as the hound loves Nigel and Nigel loves the hound. For some reason I feel a bit awkward if I’m at home when Nigel comes to walk the pooch. I’m not sure why I feel this way. Nigel is a lovely guy but it feels weird overseeing him walking the hound when I could blatantly do it myself. I’ve always felt the same about cleaners and gardeners. Maybe it’s my left leaning politics coming out.
Anyway Wednesday is a Nigel dog walking day so I decided to make myself scarce at eleven. What to do? I decided to go to my nearest library and hang out there. Just one thing I didn’t realise. Our local library is closed on a Wednesday. It reminded me of the only time my husband and I have been to Paris. We went from Monday to Wednesday with Tuesday our main sightseeing day. One problem. The most famous art gallery and museum in Paris if not the world, the Louvre, is closed on Tuesdays. You have to strangely admire the French for that. One of their most famous tourist attractions, and they close it, for a whole day. C’est la vie.
So what to do? Maybe go to library in town? Nah, they were resurfacing the main road into Nottingham. The traffic would be nightmare. As it was nearing lunchtime, I thought I’d pop to IKEA and have lunch there. The best bowl of soup I have ever had was at IKEA. Plus it only cost me a quid. Sweet.
The IKEA in Nottingham is currently undergoing some serious renovations. This meant that the restaurant is now half the size it was. As it was a quiet Wednesday afternoon it wasn’t too busy. But the menu was also reduced. This meant no soup. At the front of the queue with a line of grandparents trying to entertain their toddler grandchildren, I felt pressure to make a decision. Ten meatballs it’ll have to be with mash, peas, gravy and that weird jam thing. I found a quiet place to sit and stared at the food in front of me. It was about twice the amount of food I had been eating in one sitting. I would never finish this without choking and making a complete tit of myself. I sighed, took hold of my knife and fork and dug in.
Then a strange thing happened. I heard Paul McKenna. In my pre cancer days I had watched a series of programmes McKenna made about how to eat yourself thin. In one of the programmes, McKenna talked about slowly eating your food, savouring every bite and appreciating the full flavour of the food. I found myself doing this and slowly the number of meatballs went down. Ten, eight, six. I started earwigging the conversation at the next table. They were talking about their plans for Christmas. Christmas! Four, two. Hang about I’ve finished it. I finished my IKEA meatballs! With no choking or gagging! How the hell! It proves if you test yourself a little, you can achieve something no matter how small. I walked out of IKEA with my head held high. Maybe things weren’t all that bad after all.

Letter Limbo

 

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

 

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

 

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

 

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

 

Snakes and Ladders

 

Then you realise. The eye, the mouth. That was all a distraction. It was a Friday morning and I had just finished hoovering. I had my treatment today so I was tidying up for the nurse. The phone rang. It was my oncologist. My scan results were in. It wasn’t good. I managed to keep it together on the phone. Just. When I hung up it all came out. Not again. I was going to have to go through it all again.
I called my parents. Again I managed to keep it together quite well. They were going to come up with my sister. Phone the Marsden was the message. I phoned the Marsden. My oncologist had said she had written to them. We needed action now. The Prof’s secretary didn’t work on Friday so no appointment could be made. I would have to wait over an agonising weekend before anything could be done.
The nurse arrived. I asked my oncologist whether it was worth carrying on with my existing treatment. She said yes as it might slow down the growth. The nurse got the brunt of it. However she listened, gave the treatment and went. That’s all I wanted. Someone to listen.
My parents and sister arrived and we had a lovely weekend together. Monday came around and bang on nine, I called the Marsden. The earliest appointment was in three weeks’ time. My parents and sister were hoping for it to be earlier. I wasn’t too upset as it meant I could tie things up at work. The secretary said it was worth calling later on in the week in case there had been any cancellations. Worth a try.
My parents and sister went home and I sent yet another dreaded email to work explaining the situation. The response was amazing. I had reduced my teaching hours because the problems I was having speaking, so it was quite easy to have an extraction plan. I met with my manager who was extremely sympathetic. I made a promise that I would definitely be back for September. Although a few tears were shed, it’s a promise I will keep.
On Wednesday I decided to test the secretary’s word and call to see if there had been any cancellations. There had and my appointment was brought forward by two weeks. At last a chink. The following Tuesday I had an appointment with my oncologist. She wasn’t there so I was seen by a dumb struck registrar who didn’t know what to say. I asked if it was possible to have my scan.
“Here.” She handed me all the notes that she had about me and the scan. It was all gobbledegook to me but at least it was something. She also told me to speak to the data department within the hospital to get a CD of my scan. I thanked her and did just that.
D Day arrived at the Marsden. The Prof was there and as ever was fantastic. We gave him my notes from the registrar and sat waiting for the verdict.  Radiotherapy was not an option because of the way the cancer had spread. The only option to kerb it would be chemical. There were no trials at the Marsden currently due to the rarity and location of the cancer. However the Prof knew a man.
There was a doctor at the Christie Hospital in Manchester whose speciality was salivary gland cancer. He was looking at the genetics of the tumours and developing drugs connected with those genetics. He was going to refer me to him so that my tumour could be tested to see if it was suitable. If not, another round of chemo could dampen things down a little.
My mum is from Manchester and I have two cousins who live near there. If it had been any other city in the UK, we would have been stuffed. We shook hands trusting the Prof to keep his end of the bargain and secure the appointment with Mr Salivary Gland in Manchester. The waiting game had begun.