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We eventually got away from the hospital, loaded up with a food pump and various other bits and pieces. Tube site is pretty sore but seems to be improving by the hour.
A few days of recovery should do it!

Amusingly I just re-read my posts from the hospital, and realized that I repeated myself.  They said the sedation would cause some short term memory loss, which was supposed to make me forget the operation.  Instead it seems to have made me forget the time shortly afterwards.  Oh well.

Proud owner of a PEG

After some waiting I had the PEG insertion this afternoon. I have to say I was a lot more aware of what was going on than I would have liked, but it was brief and is now over.

Moving around is very painful, especially getting up off the bed. I have managed to drink water and eat a baked potato, and had some water through it so all seems well.

Once it has healed it doesn't seem like it will be too obtrusive. I still expect to celebrate the day it finally comes out though!

Sadly the gentleman in the corner seems to be gearing up for another night of shouting at the nurses so it may not be a very restful one again.

Pain in the peggin tummy

Peg op done after a lot of waiting. Was very odd. Sedated but felt every incision and stitch, and do remember contrary to what they said. Quite sore now and not wanting to move. But it will improve quickly I am told.

Pegtastic

2.5 hours waiting for a bed but at least I have one. Otherwise apparently I would be in the onsite hostel for the night.

Pay TV to keep me company, not so bad. Shame about the cucumber sandwich for dinner, I may have to head to the food court shortly.

PEG countdown - 1 day to go

Spend a nervous (but only slightly) morning working from home until I go in to hospital for the PEG insertion operation, which is not actually going to happen until tomorrow.  Everyone tells me it's pretty minor, but it is still pretty unappealing, and will no doubt be painful whilst it heals.  Need to see what food I can find to take in so I'm not reliant on hospital fare!

This time tomorrow I may be done and back on the ward.  Fingers crossed it's not a whole day waiting without food...

Ukulele

Phantom of the Opera mask, scan & schedule

A few days later we got my next appointment, which was for last Wednesday (13th Feb).  No indication of what for, so we went along to find out.  I had called and discussed the treatment with the oncology registrar in the meantime, as I was unclear on why the radiotherapy was over such a large area to treat the lymph node - I now understood that they wanted to cover a larger area to make sure they got any cancer cells that were still hanging around in the tissue around the tonsil and in the area between the tonsil and the lymph node.  I was also clear that the chemo was once a week, but the radio was every day (which we had not understood on the previous visit, somehow).

A few days prior to the appointment, we got a letter about the PEG insertion, scheduled for the 26th (hospital stay from the 25th - 27th).

On arrival at the oncology department, we were somewhat surprised to have my name read out before our appointment time!  I went to be weighed (which showed that all our attempts to fatten me up had come to naught so far), then had an unpleasant 'cannot find the vein' cannula experience (it was a bit cold, so my veins were hiding, so not their fault).  I then lay on a bench in front of the CT scanner, and they laid the warm, wet mesh of the immobilization mask on my face and proceeded to mold it.  It was quite pleasant, like a nice facial massage, though as it dried it did tighten up - not much chance of me moving in that, that's for sure.  They then injected me with some 'contrast' and I had my CT scan, which is done in the mask so they have a scan of me in the fixed position which will be used for the radiotherapy.

We were given my treatment schedule, which starts on Monday 4th April (the week after the PEG surgery) and we went home.

As of today, I have a week with no hospital visits, back at work.

And I have a Ukuleke I've bought so I can try to learn to play it.  Plus a growing pile of DVD box sets and films.  I'm almost looking forward to it (er, not really, though I do kinda want to get on with it now).

Follow on treatment - the plan!

Having been reassured by everyone that I might just need 'a bit of radiotherapy' we went along to see the ENT consultant on 6th Feb.  After checking my throat was healing well (which it was) the registrar brought in the oncology consultant.  After two room changes (not enough rooms, apparently) we ended up in a treatment room, where the oncology consultant proceeded to scare us to death with stories of side effects, tooth extraction, complications, etc.  He was very nice, very supporting and brutally 'worst case' honest about what would happen next.  For us, the shock (and I actually went into shock a little and had to lay down) was the contrast between the casual assessment given previously and the dire predictions we were now hearing.  No change to the prognosis, still good, so at least long term I was still likely to be OK, but only after a 6 week combined chemo/radiotherapy course.  I had even been told previously that there would definitely not be any chemo, so all in all a very shocking half an hour for us.  Subsequently we have realized that we were being given the very worst case in every respect, as he ticked off the risks he had to outline to us.

What was a bit upsetting was the need to have a PEG feeding tube installed - this is a small tube inserted through the abdomen directly into the stomach, which allows direct feeding of people who are unable to eat or drink.  Addenbrookes install these for anyone undergoing radiotherapy on the throat, as hardly anyone manages to eat properly throughout the treatment, and maintaining my weight will be very important not just from a general health point of view, but also to ensure that the treatment remains correctly calibrated.  Whilst I know it is the right thing to do, and rationally I know I'll be fine once it's in and I get used to it, the thought of it makes me pretty apprehensive.

Once we'd calmed down we were sent to the dental department to have my teeth assessed.  Apparently any dodgy teeth have to be removed due to the risk of dental complications (which can then cause the jaw bone to die and shed through the skin!).  Sadly we just missed the x-ray department before they went to lunch, so we had to wait an hour for them to get back, then quite a lot longer for our notes to arrive and our slot to come along.  The first step was the x-ray, for which I stood with my head on a little ledge whilst a small x-ray machine rotated around me.  I then went to wait some more, and was eventually called through to talk to a very nice consultant who told me I had excellent dentition and hence had no work to be done.  He prescribed me with a lifetime supply of extra-strong toothpaste and told me to use it in perpetuity.  What a relief, one fewer thing to deal with :)

We went home, and awaited the next appointment.  We had been told I would have an immobility mask made, a CT scan done and the treatment schedule provided over the coming few weeks, along with the dreaded PEG insertion, after which treatment would start and run for 6 weeks, after which I would take anything from a few weeks to a few months to recover somewhat.

So home we went, emotionally drained and somewhat apprehensive, but still happy that the prognosis remained good so it would all be worth it.

Initial treatment

On the 23rd Jan we had an ENT appointment with the consultant to discuss the next steps.  Addenbrookes' ENT department is very good, but always seems to be running late, and this time we had a 90 minute wait in a waiting room so full there was barely anywhere to sit.  Sigh.

The consultant confirmed that the PET scan had found some 'activity' in the left tonsil, which was where they had thought it might be based on the visual examination previously - no other areas showed signs of anything, which was something of a relief.  The first step was to get the tonsils  removed and checked out, and to do a panendoscopy to check there were no other signs in the throat of any problems.  Eager to get this done, the consultant got us scheduled for the following day, much to our surprise.  Hence, we spent the rest of the day in hospital doing the pre-surgery work such as blood tests.  Very tiresome, but as the prognosis was still good, we were remaining positive.

The next day I waited much of the day, talking to the other patients, and watching them leave for surgery, then return.  I finally went in to surgery, and awoke feeling pretty good in recovery (as is often the case, with the stuff they pump into you during operations).  Once I was breathing well enough and a little more awake, I was returned to the ward.  I recovered enough to force down some sandwiches and biscuits, though my throat was very sore.

I moved to an overnight ward, which was lovely and quiet (only one other person in my bay of 6 beds) and had an OK night, though I did have to keep up the painkiller dosage.

I went home the next day, painkillers in hand, and spend the next week and a bit in the most painful discomfort I've so far experienced.  They told me the recovery for an adult tonsillectomy was one of the most painful I would ever go through, and they were not wrong.  On the plus side, painkillers and determined eating of rough bulky (but well chewed!) food, which the hospital had suggested, worked well and I was 80% recovered a week and a half later.

Next we had to wait another week or so to return to the hospital to discuss the results of the tests on my tonsils and the specifics of the follow on treatment...

Diagnosis

I try to be fit and healthy.  I used to go to the gym most days, and more recently have switched to running a few times a week.  I'm not a smoker, nor do I drink too much.

Just before Christmas 2012 I went to the doctors about stomach pains, which both he and I think are IBS.  I also mentioned as an aside that I had recently noticed a node in my neck that was swollen, and had been for a good few weeks.  The doctor was most concerned about the swollen lymph node, so he sent me to the ENT clinic at Addenbrookes in Cambridge, who examined me and then scheduled me for a biopsy.

The results didn't come back until the New Year, but it turned out there were squamous cells in the lymph node, which they told me would have come from somewhere in the mouth or throat. An exam let to a CT scan and a PET scan, which are similar experiences and not particularly stressful. The scans came back indicating there was probably something in the left tonsil, but nothing big enough to be picked up anywhere else.

All very upsetting of course but the consultant was confident that with surgery and treatment I should be fine.

So, on to treatment...