What the f**k happened there?

As you may know I was diagnosed with Tonsil cancer earlier this year, this is my story so far!

On July 3rd I went to my local hospital's ENT department for an appointment about a swollen gland on my neck. The registrar had a look in my throat and took some cells from the gland to test. He sent me off and told me to come back in an hour. Soon as I walked back in the room I knew it was serious, the ENT nurse looked at me with a very concerned face and said "Oh! You're Mr. Jones" - I can remember thinking, "Don't play poker".

The registrar told me what he thought was going on, that is was likely to be tonsil cancer (I had a squamous cell carcinoma), and that the lump on my neck was a secondary tumor. I would need more tests and then several operations and probably radiotherapy to remove the tumors. At this point I was fine with the diagnosis, if you know me I'm Mr Optimistic so I "knew" I would beat this. Although looking back I think I must have been in shock, I was a little too nonchalant about the whole thing. I knew the worst part would be telling people and I wasn't wrong. Teresa (my wife) immediately burst into tears - other friends were stunned (I think it's fair to say), me, I went off to play golf. Like I said, shock!

I went into hospital on the Monday 13th July for an operation to remove my tonsil and to biopsy various areas of my throat. Before I had the op the surgeon managed to get me in for an MRI (which originally was booked for the following Saturday).

After the op I spoke to the surgeon who told me firstly that the MRI scan was clear (which I took as good news), that it looked as if they found something in the tonsil and that they also biopsied the back of the tongue. They do the tongue apparently as this is one other place the cancer may arise (if not in the tonsil).

I was sent home on the Tuesday and spent the rest of the week resting. I had a sore throat and very bad earache (apparently the nerve runs from the throat into the ear and you get sympathetic pains!). I also picked up a nasty throat infection the following weekend so the tonsil didn't heal for almost two weeks!

On Friday July 17th I went to the hospital met the consultant. He laid out the treatment that I might have which was 'interesting'!

He said that it looked like the tonsil was the primary tumor and that the swollen gland on my neck was a secondary tumor. It appears from the MRI that this is the only other tumor. As I'm young, fit and healthy (his words) he's going to be as aggressive as possible which means he wants to operate to remove that swollen gland After that he thought I'd need six weeks radiotherapy to clean up any residual cancer cells lurking in the throat. This would cause two problems one short term and one on-going. The short term problem would be that towards the end of the radiotherapy I would not be able to eat, to mitigate this they would have to insert a 'PEG', this is a tube that would let me feed directly into the stomach). The longer term issue would be that the radiotherapy would destroy my saliva glands so I would probably suffer from a continual dry throat. As you can imagine learning of the side-effects was a bit of a shock. However the ENT team then set up an appointment for me to meet the oncology consultant.

On Tuesday 21st July I saw the oncology consultant Dr Shepard (and his sidekick Dr Gray, and if you've ever seen Gray's Anatomy you'll know why that's funny) on August 19th (a Wednesday) and he was much more encouraging. It appears that the cancer is only in the right side of my head and hasn't spread to the left, again I think this was based on the MRI. To confirm this, when they remove the neck gland they'll biopsy other glands in the region to see if there are any other small tumors lurking. If they find that the tumor is only in that one gland and that the cancer hasn't spread then they'll work on the assumption that it hasn't spread across my neck. If that is true then I'll only need radio therapy on the one side which will only be for 4 weeks (if only I knew then what I knew now I would never have said 'only'!). Which means that I'll still have one saliva gland (and probably won't miss the other one).


I went in for the operation on August 5th. Before hand I was warned of all sorts of disasters that might happen, such as having to have various nerves cut, but luckily none of that came about. The consultant described the operation as successful which I think means they didn't have to hack away at me for too long :). They removed the lymph nodes on the right side of my neck (basically under the throat on the right), they've all been taken away to be biopsied. I have a cracking scar which is now healing, eventually it will more or less disappear altogether. I'm still very stiff and tender on the right side of my neck but, again, that's getting better. The operation took longer than expected. After I came around in recovery the first time I was lying there feeling my neck swelling and finding it harder and harder to swallow, this was not pleasant (as you can imagine). The recovery nurse was obviously getting concerned and eventually release the pressure, I have no idea how but I'm hoping there was some drama and she had to cut the would open :)

Eventually I was taken back into theater where they found a couple of blood vessels that hadn't been tied off properly. Finally they closed my up and sent me back to the ward. By this time Teresa was going frantic as were all the folks waiting for news.

When I finally came around I discovered that the right side of my head and my shoulder were completely numb. It appears that the lymph nodes can attach themselves to nerves and they have to be removed. I think there's been nerve trauma, hence the numbness. I'm told the feeling will come back after 3 months.

The following Tuesday (11th), I had a PEG fitted, this is essentially a feeding tube into the stomach. They fit this so that if, during radiotherapy, I can't swallow (my throat will get very sore) I will still be able to feed. That was fun (not!), it was done with the aid of an endoscope,
i.e. a camera down the throat! This was the worst of all the operations.

On 18th August I had a radiotherapy mask fitted. The mask was to hold my head in place while I have the radiotherapy, the beams have to be aimed exactly.

On the 20th I met the Oncologist again to get the results of the operations and biopsies. It was all good news.

The swollen lymph node was the only node that contained cancer cells and the cancer was 'fully contained' within the node (I assume that the oncologist means by this that there were no cells on the outside of the lymph or in the surrounding tissue). He did say that there was a tiny (< 5% chance) that the cancer could be hiding somewhere else, but as they've found the primary tumor as well (the tonsil) he's confident this isn't the case. Given that I will only need radio therapy on one side. He also said (and I didn't think I'd hear this) that with the surgery and the treatment I would effectively be 'cured'! So very good news all round.

The amazing thing to me about this whole thing is the timescale. 7 weeks ago I was a healthy young(ish) :) man, was diagnosed with a tumor and in another 4 weeks from now (so less than three months elapsed) I'll have been through 4 operations, 4 weeks of radiotherapy and some of the best care in the world to be 'cured'. It's been quite a ride!

And so began some of the worst weeks of my life!

I started my radiotherapy on Monday 24th August. I had to go every day and the treatment lasts about 10 minutes although I was often in the hospital longer than that, typically the rooms are running late so I was often there 30 to 40 minutes. At first this wasn't a burden, I sat in the waiting area and worked. However the effects of radio therapy are cumulative, so while I was fine the first week, by the beginning of the second week I was starting to feel very tired. By the end of the second week I was exhausted and could hardly taste anything. I was struggling to swallow because my throat was starting to close up. By the beginning of the third week I couldn't swallow at all (literally) and could only 'eat' through my peg, although at that point I didn't feel like eating anything. By the start of the third week my mouth started filling with mucous, this is produce by the cells as they break down in the throat, this had nowhere to go (like I said I couldn't swallow) so I spent the next four weeks with a bowl and a box of tissues as my constant companion - this was not pleasant - day and night. By the middle of the final week I'm in pieces, I can't eat, I can't swallow, I can hardly get out of bed. I spend most of the Wednesday evening in the hospital while they run various tests to see if they need to keep me in overnight. By the time I finish treatment on the Friday I'm totally spent and as I'm leaving the hospital I burst into tears in relief that my treatment was done.

The two weeks after my radiotherapy finished weren't a great deal better. I still couldn't swallow, still had lots of mucous and was still exhausted. I had some good days where I could get out, but as soon as I did that I'd be knackered again.

During the weeks where my mouth was full of mucous I'd also spend time throwing up, not that I had a lot to throw up so it was actually about 5 minutes a day retching, not pleasant - all in all a pretty shit time!

I also lost a lot of weight in that period, about 25lbs (11 kilos).

At the start of the 3rd week AT (After Treatment) I started to swallow, just the mucous and saliva, but it was a start. Towards the end of the that week we (my family) went to see Michael McIntyre in concert (he's a UK comedian), and at the show I managed to drink a Coke. It didn't taste a lot like Coke but it was cold and fizzy and just what I needed. That was the first drink I'd had in about 5 weeks and it was so good.

The following day (Friday 9th October) I had my first follow-up, this was with the McMillan ENT Nurse. Firstly she was really pleased at how well I looked (believe me, I looked like shit so God knows what she was expecting), then when I told her I was actually drinking she was amazed. She said that normally it would take about six weeks before I could drink, so I'm way ahead of the curve as far as recovery goes.

I asked her about my treatment and she told me that the treatment had been very aggressive and that I'd been given a very high dose of radiation. That goes a long way to explaining why I was feeling so bad physically and I guess why it dragged me down so much.

She also said that they knew it would be very, very tough for me during treatment, which I guess explains why she was surprised at how well I looked!

On the way out from the nurse I saw my ENT consultant and went to say "hello", we have a full follow-up in November. First thing he asked me was "When do you start radiotherapy?" when I told him I'd finished he was amazed at that and (again) at how well I looked. I think they were expecting some gray ghost to be walked in!

On the down side, the nurse told me that I probably wouldn't be able to start eating until November or December (but I'm hoping that as I can drink now then those timescales will shorten). The other news was that I probably wouldn't get my taste buds back in order for another 5 to 6 months, so sometime next year.

I actually started to eat on October 14th (about 6 weeks ahead of schedule) half a mini Mars bar and a tiny bit of Salmon. I almost cried, in fact I did shed a tear or two. It feels so fantastic to be eating again and starting to feel almost human. I also had a single weetabix the following morning for breakfast. Doesn't sound like the most exciting thing in the world but I'm so excited! Oh, and I drank my first cup of tea in weeks that morning, that felt so good!

Now it's November 6th and I'm eating three meals a day and drinking normally. I have no appetite and so am still losing weight, 2 or 3 lbs over the last couple of weeks which isn't too clever!. I can taste some things (eggs, sausage, bacon, sauces) but not others. I seem to have lost all my sweet taste receptors and alcohol tastes really nasty! Hopefully that will recover. I also find that after a few mouthfuls my taste buds seem to get overwhelmed and I can't taste anything, again that should get better. All in all as far as my taste goes it's better than I though it might be.

I'm starting to get feeling back in my shoulder which is a bugger because it now really hurts, although my ear is still numb. My scar feels really tight I feel like somebody's attached a really strong elastic band to my neck and it's constantly pulling on me.

My mouth is dry, not completely dry but drier than it should be. I always have a bottle of water close to hand, in the car, on my desk, next to the bed... Again I'm hoping that this will get better.

Today I'm in a 'Why me?' sort of mood, slightly bitter about everything that's happend over the last three months. Having said that overall my attitude has been 'Could be worse'

This sounds trite but there's always somebody worse off than you and I'm well aware of that.

I have a meeting with my consultants on November 17th so will learn more then, although I've got a feeling that it will be a 'Hmmm, you seem OK, come back in 3 months' kind of meeting!