Recovery week 15 - not quite as good a week

That'll teach me to be complacent!  After a couple of weeks of constant improvement, this last week has set me back somewhat.  Last weekend a huge ulcer developed at the back of my mouth, on the 'treatment side'. Ulcers are obviously painful, but ones that are huge and in a place where all food and drink passes on the way in are particularly no fun.

The ulcer seems to be slowly healing now and this morning is the first time in a week that I have had breakfast without any significant pain.  My gums on the same side also became incredible sensitive by the middle of the week, I think because of another couple of smaller ulcers on the roof of my mouth, by the gum line - hard to tell, as it's not easy to see.  Hence brushing my teeth can leave me with my eyes watering!

I've gone back to using the homemade bicarb/salt mouthwash, which seems to have helped the healing along.  Perhaps I shouldn't have stopped using it in the first place!

Hopefully the relative lack of pain when brushing and eating this morning is a sign that things are improving again.

2.5 weeks to go until the PEG comes out though, which I am really looking forward to.  So ulcers or not, I am still eating!  The PEG is now a constant annoyance, as it no longer needed and just gets in the way and provides a constant reminder of what has happened this year (not that I forget very often!).

Also, I had my PET scan last Friday, so it has now been a week and no call from the hospital, which I am hoping means they found nothing and won't be calling next week - fingers crossed.  Not sure what the nurse did with the cannula, the bruise on my arm is worse that I remember having before.

Recovery Week 14

After a lovely weekend away, where I ate pain-free and had some Guinness I am feeling a good proportion of normal.  Throat is dry still, not helped by the scorching heat we are experiencing here in the UK right now, but as long as I have a bottle of water I can eat most things and find myself almost forgetting I was ill (not often, mind).

So no more feeding pump, and I reckon I'll be fine to get the PEG removed mid-August when I go back to the hospital - I'm already getting annoyed with it, now I'm not using it, and it hasn't been a week yet!

PET scan Friday, fingers crossed that I won't then hear from the hospital prior to mid-August...

End of week 13

At Centre Parcs! Bit tiring but good. I have had a couple of days of very little pain when eating, which is timely as this weekend is the start of not using the food pump. So far, so good.

Recovery Week 12

We're in the 12th week of recovery and all the news is pretty positive.  I had a check up today and the consultant is happy with my healing (even though it still has a little way to go - some means are still a bit of a trial) - he is scheduling a PET scan for sometime in the next few weeks to check that nothing has been left behind (or appeared in the meantime) but he was pretty clear that he would be very surprised if there was (with the usual caveat that anything is possible).  I'll then have one every 3 months for a little while, then less often, for the next 5 years.

The speech therapist has discharged me, and the nutritionist is scheduling my tube removal for the next appointment in 6 weeks time as they are confident I'll have been off the PEG for a few weeks by then, based on my progress.  They also gave me some gel for my mouth to try to keep it hydrated overnight, in the hope that I might be able to sleep past 5:30am, which is when I currently wake up parched.  Apparently some people swear by it and others don't find it helps at all, so I will try it and see.  Luckily I never used the spray they gave me, as they have just heard that it can be quite bad for teeth - I'll bin that one!

I had a PEG tube replacement yesterday, which was very quick and done at home, but still not entirely pleasant.  Last one, thankfully - I'll have half of the process when they take it out, of course.  Apparently they just pop it out, put a dressing on and send me home.  By the time I get home the hole will be more or less sealed.

And I treated myself to a cheeseburger, which I managed to eat (with the aid of a bottle of water).  And some chicken nuggets ;-)