Mouth care recommendations?

Ah, same as me. I could never take as much as I was supposed to.

Keep at it.

You'll get there.

No worries there getting the big feed in they also recommend another small bottle which i have had a few times but have to be careful due to the gag factor. Something odd I have noticed is I get these odd smells like electrics burning etc which no one else can smell. I dont know if this is a worry or not. I am going for an appointment tomorrow at the H & N so will see what they have to say , I won't be letting them stick a camera down that for sure lol . All the Best Regards Min 

I doubt they will scope you yet. My first scope after RT was at 12 weeks. As for the smells I got all sorts of weird sensations and smells and one night I aspirated my feed as it refluxed up in my sleep. That frightened the living daylights out of me. I coughed for days after that. I made sure I slept propped up on three pillows after that.

Good luck with your appointment.

I suppose I will ask them for  morphine and mouth wash. Is there anything good for my burnt neck I wonder . All The Best Regards Min 

Flamigel is the stuff if it's really bad but the RT doesn't continue to work ,after treatment has ended, on the skin like it does on the tumour so your neck should be really much better in two weeks. Aloe vera gel is a good home remedy.

Whereabouts along the road are you Marc? Can you remind me? Head like a sieve sometimes.

OR better still pop a quick bio in your profile?

Minmax said:

all fine I am suppose to see someone from H & N  this Wednesday and suspect they will be telling me to eat , Which I know already. What the point of having a teaspoon full of something only to throw up a load of my feed.

At the risk of upsetting your dieticians (I upset mine a lot)

I couldn't swallow much for ages and they kept banging on about my weight (used to stuff my pockets with keys and phone, wear my heaviest clothes and shoes etc till I got caught). I kept getting threatened with losing my swallow but to tell you the truth exercises are just as effective in keeping your swallow function fairly healthy......or at least they were for me.

Hi Min ditto used to get the burning smell a lot. Plus whenever hubby braked in car I got a funny smell. At home I went through a phase of fusing bathroom  light in middle of night   This  was in weeks after treatment. I wasn’t scoped for months treatment finished 31 aug and was early February befire I got scoped. As fir weighing in ti too lije Beesuit used devious methods of stuffing things in pockets including a bag of glass marbles don’t ask. 
so be readjusted the burning smell can happen 

Remember your tummy shrinks I used to feed in day max 90 mins a time then take it off I also stood up to feed. 
Hazel x

Hi Marc. Just to say that I saw my team yesterday and they did manage to stuff a camera up my nose and into my throat. I was a little anxious about it since it’s still very raw down there, but it wasn’t too bad. They had a good look around, made me swallow and made me say ‘Ahhhh’ etc,  and pronounced that it was healing up nicely.

They also advised me to stop the MST (slow release morphine tabs) as they were maybe becoming a bit of an unnecessary prop so I’m cutting them in half as of today. If it goes well I’ll stop them entirely at the weekend. (I must say that the morphine is still badly affecting my bowels and it’ll be nice to hopefully get them back to some semblance of normality!)

Regarding a scan, my oncologist said they would not scan me until 4 months post treatment (so early May) due to the risk of false positives caused by healing and swelling. They want to see me again in 8 weeks.

I hope you start feeling better very soon. It really is tiny, tiny steps, sometimes even backwards sadly, at this stage but it does gradually improve. 

My dieticians used to nag me too (they are just doing their jobs i guess) and i did exactly the same thing, i used to wear my coat, my big boots and thick jumpers etc!

I think with the best will in the world some weight loss is inevitable (i now have the opposite issue as i am gaining and back to 13 stone already)

Completely agree the exercises are vital it was really drilled into me that i should do them for the rest of my life

Hi Markel

Glad they said you are healing nicely! And i was the same, the morphine was a bit of a prop for me.

One thing i would be wary of is coming off the morphine too quickly, i went from a large dose to nothing within a week and it made me very, very edgy- i had to come off them over a period of 5 weeks in the end.