Sunday, 15 January 2012

One Girl - One CUP ;-)

This Monday was D-Day - Diagnosis Day! At last I got to the bottom of my lumpy neck problem. Well, sort of...

It all started back in September when I noticed that the gland on the right side of my neck was swollen. I thought "Oh I'm probably going to get a sore throat or 'flu or something" and ignored it.  I didn't get anything, but just as I was getting ready to go off to London for a few days (Eurogamer 2011) it started to hurt a bit. Typical - it was going to ruin my holiday. So I popped to the doctors and she told me it must be a blocked salivary gland and gave me some antibiotics to take with me.

They seemed to do the trick and it stopped hurting, but the doctor had said I had to go back, no matter what, so I did. It was still swollen but was quite painless by now. She had another feel, looked thoughtful then said "I don't know what it is - but I don't like it at all!" She sent of for an URGENT referral to the ENT department of our local hospital - the wonderful University Hospital of North Staffordshire.

A few days later I was sitting in the Central Outpatients department waiting to see a consultant - Mr Rowlands, reading the notices on the walls and wondering why they had spelt "reletives" wrong on them. Thinking next time I'm going to bring a book.

Mr Rowlands was young and friendly and Nathan said (afterwards - not while we were in there) he had a very nice suit. Kind of dark blue pinstripe. Anyway he also had a feel of the lump in my neck, looked into my mouth and down my throat. Put some blue rubber gloves on and had a feel of my mouth and throat, then asked if it was okay for him to put a camera up my nose.

I hadn't really been expecting this - but I said why not. I'd never had it done before so had no reason to worry. It was very thin and flexible and it went up my nose and down my throat. It didn't hurt exactly - just brought tears to my eyes!

He said that everything felt and looked perfectly okay and it didn't seem to be a blocked salivary gland. He didn't know what to think so he decided to send me for an ultrasound scan, and if they saw anything on that maybe a needle biopsy of the lump itself.

A few days later I was in the ultrasound department, with a book, waiting for my scan. I was taken to undress and put a gown on, then had to go into a darkened room. There were a couple of nurses and a doctor, who was going to perform the procedure. He put some pink gel on the roller and started to press it over the lumpy area on my neck. He was staring up at a monitor just above my head. i couldn't see it as I had to lie still. It was making a nice soothing beeping sound, when suddenly there was a wierd sci-fi noise getting louder and louder. "OMG what has he found?!" I thought, but then he just got his phone out and answered it. Seems he's a Star Trek fan and it was the transporter sound from original series.

He did say that he had found two enlarged lymph nodes that had fused together, so he thought it best to get a sample from them to send off to the labs. A nurse covered my neck with red staining stuff and they sent for someone from the lab who would be able to ascertain, before I went home, whether they'd got enough cells to be able to test. So the tiny darkened room was getting pretty full by now and I felt me first pang of panic, this must be serious!

So I lay still again while he did an ultrasound guided aspiration needle biopsy of one of the lymph glands. It didn't hurt at all. just like an extra long injection really. I had to stay there while the technician did his stuff. I'm not sure what he was doing but it sounded like he was using a hairdryer. He confirmed that he was happy with the quantity of cells and I was sent on my way. I had already been given another date to visit Mr Rowlands, in two weeks time. Had to give the lab time to have a good look at these blow-dried cells.

Had a couple of normal, hospital-free weeks, To be honest I didn't really think about it. It wasn't hurting at all so I just did all the normal stuff like going to work, drinking wine and playing poker. (Just need to point out - I don't do the drinking and playing poker AT work)

A few weeks later I was back in the hot and busy Central Outpatients ENT waiting area, reading and waiting to see Mr Rowlands again. He was still looking very smart and was up front and frank about the results. He was sorry to tell me that the lab had discovered some "highly suspect" cells and it was likely that I had cancer. They just had to find out where it was hiding. Just for good measure he poked the camera up my nose again (didn't even make my eyes water this time) and was perplexed that he could see nothing wrong. He decided that I needed to have a CT scan, then an investigation inside my mouth and throat under general anaesthetic. I signed the consent forms and off we went.

This time I got an evening appointment, which meant that the CT Scan department was empty and it was easy to park too! There was just one couple and an old guy with his very embarrassed daughter. He was very keen on sharing. He asked everyone who turned up there "Is it your back passage? It is mine - I've been on the toilet all afternoon." with his daughter whispering "Be quiet, dad!" every few minutes. I had to sit and drink a litre of water, impressively from a bottle with my name on it, and only then was I allowed to go through to the next stage and get undressed.

I put on the gown and was led into the CT Scan room. It was awesome! Everything in there was white and there was this pristine white bed in the centre, with a huge shining white doughnut, that it was poised to go through. I was asked to lie down, while a nurse put a line into the vein on the back of my hand. Then the technician came to ask me a few questions, just to make sure he had the right patient there. He explained that he was going to go into another room and would remotely inject me with iodine. He said that it would make me feel hot all over and I would feel like I had wet myself! "Don't worry" he said "you won't have - I promise"

I was really glad he had warned me about that beforehand, because that it exactly what it felt like when he triggered the injection. Warm and strange!

Before that though I was moved into the doughnut and this blue line started rotating as I went through and it looked at my whole body. It was amazing! It even talked to me: "Okay hold your breath now" "Keep your head still" The whole thing was over in about ten minutes. I was quite disappointed when it was done - it was fascinating.

When I got out I found that the old guy had been keeping Nathan entertained with rude jokes while I'd been in there. Something about a man and a duck.

Another couple of weeks elapsed, then I rang to see if they'd had the result. The hospital faxed it through to my GP, but when we went to see her she said they couldn't see anything, except for the lumps in my neck.

I got a phone call just after that asking me to come for a PET scan, which was a surprise as Mr Rowlands hadn't told me about that at the last appointment. They did have some kind of Group Team Meeting every Monday where they discussed all their cases so I guess it was decided at one of those. They gave me a date one week after my next procedure - the biopsies!

Meanwhile I'd had an appointment to go into Ward 105, to have the biopsy investigation. I had to be there at 11.30am, having fasted from 7am. It is a lovely ward, with a nurse's desk at the end and lots of staff coming and going. I was at the top of the afternoon list, so had to get my glamorous hospitals gowns on, one with the opening at the back, the other worn like a dressing gown over it, right away. Then it was just a matter of relaxing (ha!) until the burly hospital porter came to wheel me off to theatre. There were about six of us in there, all waiting for day surgery and hoping to go home at night. They had the TV on and there was always something happening. They came to take my blood pressure and give me my pre-med, which comprised of two huge white paracetemol tablets and two white brufen caplets. You had to try for the Guinness Book of World Records "Take the biggest four tablets with the least water" record. There was a microscopic amount of water (you can't drink anything just before an operation now!) I managed three, but the fourth got stuck in my throat. Had to stay there though as I wasn't allowed any more water.

A chap in blue with a multi-cloured hat came by to say hello. He told me his name was Julian and he was going to do the operation today. They were going to have a  good look down my throat and take biopsies from all over my mouth and tongue and throat. It's called a panendoscopy. "We obviously can't do that while you're awake!" he said cheerfully. They wouldn't cut my neck at this stage though as I was due to have a PET scan the week after and a fresh wound would mess up those results.

Felt quite spaced out by the time the porter arrived at 1.15pm and said he was looking for me. He laughed and joked all the way through the corridors, up in the lift and into the antechamber of Operating Theatre 6. There were two men in blue waiting for me there. One was the anaesthetist, who put a line in the back of my left hand. Then the other one gave me a mask and asked me to breathe deeply. "Soon you'll smell a gas, but just keep breathing....."

The next thing I knew it was 3.30pm and I was in a recovery room. I gradually came round, when the nurse noticed me wake she told me the surgeon wanted to see me before I went back to the ward. I wondered what he'd found. When Julian came in - I recognised the hat - he told me that they hadn't taken any biopsies as they couldn't find any suspicious areas to take them from.

I was wheeled back to the ward. I had to go to the toilet and eat some toast and drink tea before I would be allowed home. I took my first bite of toast and tried to swallow - it was agony! My throat was so sore from the tube they had put down there. I only managed one tiny quarter of toast, washed down with lots of tea. They did let me go home around 8pm though.

It took about a week before I could eat normally again - just in time for the PET scan.

This time I had to report to the Department of Nuclear Medicine - although the PET Scanner turned out to be on a truck in the car park. This time I had to fast again as they wanted all my cells to be hungry. They injected me with some radio-active glucose and the idea was that cancer cells would take up the glucose much faster than other normal cells. The scanner would then be able to build up a 3-D image of my body and highlight any suspect areas. They would light up like fireworks!

So, I had the injection - taken out of a lead-lined safe and protected by a metal sheath - and had to lie in a darkened room to relax for an hour. This was lovely! There had to be no stimulus so you couldn't read or listen to music - just lie still and quiet. I think I nodded off. The technician came in - I had to empty my bladder (I was taken to a loo!) then get into the scanner. This one was bigger than the CT scanner, and it would take up to an hour for me to go all the way through it.

As I was waiting my turn in the waiting room a woman had come in sobbing because she couldn't go through with it. If you are claustrophobic it must be your worst nightmare.
I didn't really like it but as long as I could see a bit of the ceiling outside the tube I was okay. I was strapped to the table, with my head restrained in this block as moving would mess up the scan. It seemed to move in a little, wait five minutes, then move again and so on and so on. I tried to think nice thoughts and guess when the next move would be. It did seem quite a long time, although I was only in there about 40 minutes as I'm so small.

A couple of weeks later I was back in that waiting room, to see Mr Rowlands once more. I asked hopefully if he had a diagnosis for me and he said "not really". It seemed that the PET scan had shown up nothing except for the lumps in my neck. The only thing left to do now was to take a lymph node out and send that to the lab, see if they came up with an answer.

So, the week before Christmas, on 20th December I turned up once more to Ward 105, starving hungry, at 7.30am. This time I was to be fourth on the morning list. Mr Hughes came to see me this time. He seems to be the head honcho for oncology on the ENT team. He told me that he was going to make a cut on my neck, but in the natural crease so you wouldn't be able to see it too much afterwards. Then they'd take some lymph node and send half off to the microbiology lab and the other half to histology to see what they find. He said at this stage they hadn't ruled anything out - from TB to the "weird and wonderful"

It is quite strange being a medical mystery. Half of you feels - "Cool, there's nothing wrong with me really." and the other half "I wish they'd just find out what it is and start treating it!"

He also said they were going to do the panendoscopy again - but I told him there was no need I'd already had that done. I was worried that with Christmas only 5 days away I wouldn't be able to swallow my turkey and all the other delicious goodies. He looked at my notes and said "Hmm who did that? - Oh it was him, yeah he's quite good. I won't do it again!"


So late in the afternoon I was once again wheeled to an operating theatre, had a line put in the back of my hand and drifted off without the aid of a gas mask this time.

When I woke in recovery I could feel pain in my neck. The nurse asked me how I felt and I told her. They put some pain medication in my line and I drifted off again. Next thing I knew I was back in the ward. This time I managed all the toast with ease - I was really hungry and no sore throat! I just had a big impressive plaster across my neck. The nurse explained that I had to keep this surgical tape dry and as soon as my doctor's was open again after Christmas, had to go in and have the stitches out.

I went back home via the Sizzling Wok for Chinese takeaway. Those sweet and sour chicken balls tasted heavenly!

My next appointment was with Mr Hughes and was scheduled for 9th January. So I got on with Christmas preparations and enjoyed doing Christmas day at my house for the family. It was fun. I celebrated my birthday on new Year's Eve and hoped that 2012 would bring a diagnosis for this mystery.

Back to Central Outpatients, ENT corridor once more to see Mr Hughes this time. His suits are just as impressive as Mr Rowlands. I wnet in and said "Do we have a diagnosis yet?"
"Yes and No" was his reply. Seems I persist in being a medical mystery.

The lymph nodes show that I have adenocarcinoma. This is a cancer of the glandular tissue but is just a secondary cancer. it has it origins elsewhere in the body - but they cannot find out where. So I am classed as CUP. Carcinoma of Unknown Primary. He says that he sees this maybe two or three times a year. It sometimes happens that the primary cancer disappears - the body fights it off or its blood supply gets cut off and it goes away. it might never be found!

All he can do is treat the secondary cancer.

So now we have a plan:

On 31st January I have to go into hospital for a Modified Radical Neck Dissection, where they will take out all the glands they can find.

Then I will have radiotherapy to make sure all the cancer is gone.

He said "We are looking at a cure here."

I asked what would happen if I didn't have the operation and he just said "It will end your life"
So I guess there's no choice.

He said to be careful looking it up on the internet - as some of the sites (especially American ones) can be a bit scary.  "There's even some surgeon who has put the whole operation on YouTube - why would you do that? Stick to helpful sites like Macmillan."

Yes - of course I've looked at it :-)

So now I have been introduced to my own specialist nurse, Wendy, who I can call or email if I'm worried about anything at all. She's given me my own folder with information about head and neck cancers, how to get help and support, financial stuff etc. I found it funny that it is a BLACK folder! I shall call it my Black Folder of Doom :-)

She also filled in a form so that I can get free prescriptions for the next five years.

I've also had an appointment come through to see the "Reconstructive Dentist" next week. Seems having radio-therapy can play havoc with your teeth, so they take care of them too.

I LOVE the NHS :-)

So I am of on a new back and see how it's going from time to time..and I'd love to read any comments from anyone.

Yeah - the first comment will be  "this is far too long" but I think we are all caught up now. The next ones will be shorter.



  1. It is good to know that most things are sorted out now, at least. Again, good luck, m'dear!

  2. SOOO looking forward to hearing that this is all BEHIND YOU and you're COMPLETELY WELL (BIG CAPS THERE) ... I'm tired of having a medical mystery for a friend! Want the old Berni back!