Week 3 completed

Spider3 1 month ago

10 replies
40 subscribers
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Hi everyone,

Just an update after completing week 3 of RT and 1 chemo.

This week's been a tough one as I've lost all sense of taste except for a slight hint of my coffee in the morning. I'm struggling to keep eating as everything tastes yuck. I'm wincing and whining with swallowing certain things. Gums have calmed down a bit but throat seems to be getting gradually worse. Keep getting annoying little blood blisters on soft tissues in mouth ,I pop the ones I can reach!! Oncologist has upped my pain relief to soluble cocodamol and pregabalin liquid.

Also prescribed oxyetacaine and antacid to numb throat to help eating. But I'm sure I won't use much of that while in can't taste!!

How do I get 6 fortisips down me ? I have feeding RIg but how do I space them ? Will try and swallow , but 6 is a lot to keep up my weight! Any advise please.

I am still attempting to eat but it's no fun at all. I do my exercises to compensate and keep tongue strong.

I have my second and final chemo on Monday , not looking forward to that but I've got to have it . Nearly half way now of 35 RT.

Thanks for listening and any advise would be appreciated

Cheers Mark

Beesuit 1 month ago

Spider3 said:
How do I get 6 fortisips down me ? I have feeding RIg but how do I space them ? Will try and swallow , but 6 is a lot to keep up my weight! Any advise please.

Pump feed slowly. I did it at night but others here in the day. It completely removes the chore of bolus feeding and worrying about getting enough in

You're doing OK. All the stuff that's happening to you is unfortunately normal. Head down and plod on

Hugs

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

I wrote a blog about my cancer. just click on the link below

https://todaymycoffeetasteslikechristmasincostarica.com

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Spider3 1 month ago in reply to Beesuit

Thanks Dani ,

I don't have a pump feed ,just the little bottles that I can only bolus feed ,I will ask about getting a pump.

Mark x

Peter E 1 month ago in reply to Spider3

Hi Mark

I also pump fed overnight...22.00 to 04.00 usually, bit of a pain getting up early to disconnect/flush the feeding tube but after finishing the task I ended up with another 4 hours of well needed undisturbed sleep...

Peter

Beesuit 1 month ago in reply to Spider3

Spider3 said:
I will ask about getting a pump.

Mark x

Ask at your next RT. It really is easy to do

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

I wrote a blog about my cancer. just click on the link below

https://todaymycoffeetasteslikechristmasincostarica.com

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Spider3 1 month ago in reply to Peter E

Thanks Peter

old biker 1 month ago

Hi Mark, you really should ask about getting overnight feeds now, it's no good trying to force food down. you can get syringes to put the fortisips through your RIG, your team can sort all these things for you. Stick with it you're halfway now.

Ray.

Spider3 1 month ago in reply to old biker

Hi Ray, I will ask about pump while on chemo Monday ,I tried using the syringe today which weren't bad ,but very time consuming, and I need to clear 5-6 bottles per day if I don't eat anything!!

I count the water I use to flush the tube and meds to my 2 litre a day. And sip the rest.

PFJTHS 1 month ago

Sounds about par for the course. You are doing well. As to the Fortisips the easiest way to deal with them if you can't face them orally is to put them in a jug and use one of your syringes to suck them up and put it through your G-tube. I found that I could "inject" the fortisips quite quickly, very unlike the bulk pump feed which I did over a few hours.

I found the oxyetacaine virtually useless, but take it about 10 minutes before you want to try and swallow. Even the Drs said the recommended 30 minutes before was farcical. It is very short acting. Try taking paracetamol around 30 minutes before eating. I found that quite effective.

Peter

See my profile for more details of my convoluted journey

Spider3 1 month ago in reply to PFJTHS

Hi Peter , yes I don't think I'll bother with the oxytecaine really .

I'll take my cocodamol 30 mins before trying to eat .

Beesuit 1 month ago in reply to Spider3

Spider3 said:
Hi Peter , yes I don't think I'll bother with the oxytecaine really .

Yes. Did nothing for me.

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

I wrote a blog about my cancer. just click on the link below

https://todaymycoffeetasteslikechristmasincostarica.com

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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