Hi Jo,

How are you getting on?.....finished my first full week of radiotherapy on Friday and I'm finally recovering from chemo. No side effects yet from the radio but I had a meeting with my speech therapist on Friday to explain to me all the possible complications further down the line. Lots of toungue and neck exercises to be getting on with.

Al

x

Hello Al,

End of week two for me today and I am starting to feel the  side effects .  My taste is dramatically lost - I cannot taste things correctly at all and I have  mouth ulcers pretty much kicking off in many places .  I assume I may have one deeper in my throat too as it feels like a lump of gravel stuck there when I swallow.  

I have had a busy garden tidy day  but a-short while ago tiredness came from nowhere so listening to my body and now sprawled on sofa .  I am thinking I am likely to be using my PEG for feeding by the end of next week .  I am struggling to find anything that tastes remotely nice . - I have been given some gel to apply in my mouth to try and add a barrier to the ulcers... 

Was hoping to be sude affect free for a while longer but mine seemed to rear their head approx two days ago around treatment 8 

Glad to hear you are not feeling any effects yet and hopefully you last out longer than me
 

Dreading the thought of round 2 of chemo in a weeks time  though

Jo

x 

Hi Jo. Seems you're following my trajectory I was day 10 when all of a sudden food wasn't b appealing. Plus ulcers started on mymy side of tongue csnt cheek. Have you got gelclair? It's fairly good. As for tiredness radiation fatigue will be setting in just listen to your body.  
Chemo will come nit all of us manage the full course I had 2 of a planned 3

Hugs Hazel x

Hi Jo,

Sorry to hear about your reactions so far but yay you for not letting it stop you doing your daily chores!...You suffered so much after your biopsy that you deserve a break and hopefully the ulcers will clear up soon.

Totally opposite to what you are feeling for the first time in months I no longer have the golf ball stuck in my throat, my taste has definitely been impaired, tea seems to be the thing that tastes the worst...most of the other food I'm eating is soft with lots of sauce or gravy and I will try and carry on doing that as long as I am able (I'm having a bowl of soggy bran flakes as I type this).

I too am dreading the next dose of chemo but at least I know what to expect now. This time I must find a way to keep my fluid levels up, last time I could barely get a sip of water down. Interestingly when I was talking to my speech therapist she said that depending on how the first dose reacted with the tumour the second dose may not be required (that seems to tie in with what hazel was saying)....but I'm not getting my hopes up and fully expecting that I will get the second dose.

Keep ticking off those days!

Al

xx

Hi Al /Hazel

Tea was the first thing I noticed , it tasted so extremely strong .  I am on fizzy no sugar soft drinks and millk lattes which still have a hint of taste .

This morning my tongue  is so angry and feels swollen and I cant speak and I ended up taking oramorph at 4am

I think I will go for my first forsip feed via PEG this morning , as I am just managing fluid but cant see any type of food being tolerated .  

Hazel will the ulcers pass ? They have got progressively worse since yesterday, wondering if they will be a permanent thing as I am back being beamed tomorrow so surely more damage on damage?

I am due to have my PEG rotated tomorrow afternoon and I live so rural no-one can ever find me and have to ring fof help , this could be a prob as I literally cannot speak ‍♀️ If she gets lost and needs directions doh ! 
 

I dont think I will be so lucky in having my 2nd Chemo cancelled . 

Have a lovely Sunday both

xxx

Jo

Hi Jo Al

i had 2 chemos the 3 rd ine was cancelled. 
sadly jo the ulcers continue no use telling ribs. They are caused by the radiotherapy I found gelclair and bags of pain relief helped but I got to stage where no food went down my throat after week 4 I had 35 radiotherapy session so an extra week. They do go but mine I still had 3 month down the line then tongue and cheek go jelly like whike it's starts to repair itself now I get no issues. But I do get ulcers caused by acid food so try ti stay off those ie tomatoes citrus vinegar etc 

pas for nurse there's  an app called just 3 words which each square meter of U.K. had 3 words dedicated to area almost all n h s staff have it downloaded try it it's brill 

sorry I can't give news and say in morningulcers will go they won't yes try the peg feed it's there for a reason I depended solely for 3 weeks post and 3 weeks during treatment in my ng tube. Sometime I couldn't even sip water just rinse my mouth out and spit. Beware if the dreaded mucus soon just warning. Hugs to both if you I have been there kniw Hiw yiunfeel Hazsl xx here if you need anything we're back in U.K. after 9 weeks away. 
Hazel xx

Hi Hazel

What a smart idea ! I know aboit this  app too so just downloaded it and emailed the nurse and hope she gets the email
 

Jo

x

Hi Jo and Al, 

checking in to see how you are both doing, letting you know I'm thinking of you and sending huge healing hugs 

sue xxx♥️

You're welcome. 
hugs Hazel xx