What to expect in last week of Radiotherapy

Hi Sue. You need 2500 calories so check what your food drinks are. 
My taste changes took months to improve. The salt taste disappeared completely to nothing and it was six months before I could enjoy what I was eating. I could tell you what it was but the taste was so faint that if it wasn’t for my sense of smell I probably wouldn’t have. The worst but was tasting the first mouthful and getting excited about it only for the second to be no existent 

We are all different though. 

Hi, Sue, well done you are nearly there. Are you overnight feeding through your RIG? If not, you could ask your team about getting them, it would take the worry away of not getting enough nutrient. Don't try to force yourself to eat, the salty taste will go, although it can take quite a while for your taste to return.

Ray.

Hi Ray, thanks I must say the time has flown by. First two weeks were fine but last week was a challenge and now that I can’t swallow food I’m hating the feel of liquid swishing around in my stomach. I am barely managing 4 fresubin drinks per day but the hospital suggest 5. I will mention to the team about pump feeding as I do struggle drinking what tastes like salt water. 
Did your taste ever return to normal? 
Sue x

Hi I was told 2500 calories a day some days I managed that some I didn’t  also make sure you’re getting G protein that aids recovery. plus 2-3 litres of water. Week 3 of recovery I was swallowing 6 ensures which gave me 1800 calories thus enabled me to attempt food soft food only poached eggs were a go to well buttered fruit tea cakes dipping Jaffa cakes into coffee. I derived very little pleasure from food for a good 6 months. My mantra was food is fuel and eat to live not live to eat. It’s a marathon not a sprint mindset will help you. look at blog for more info might help. 

Hazel 

Hi, Sue, I'm sure things would be better for you with the overnight feeds. Yes, my taste did come back to more or less normal, although there were times when I thought it never would. Recovery can be a long-drawn-out thing, with ups and downs along the way, sometimes it feels like one step forward and two back, however you will get there. Let your body heal itself.

Ray. 

Thanks for this info Hazel. My problem these last couple of days is that my tongue feels on fire, even drinking water hurts. I’m taking painkillers as prescribed and my tongue still hurts where it is so red and sore x

Hi sue sadly burning tongue syndrome can happen intermittently. Even now at 6 years I’m prone to it but mines a legacy if treatment. Best advise I can offer is use your rig I was totally my tube fed until week2 if  recovery I had 35 radiotherapy sessions plus 2 chemo sftef  treatment finished nothing went in my mouth maybe a sip of water tur 2 weeks then like I started in ensures. . 
hazel

it does get better all takes time. 

SueEssex said:

My problem these last couple of days is that my tongue feels on fire, even drinking water hurts. I’m taking painkillers as prescribed and my tongue still hurts where it is so red and sore x

This is direct RT damage and will get better. If that was me I would just take everything by tube and increase the analgesia. 
I had no problem struggling through the last week doing that. It’s when I finished that I just faded into my bed for two weeks. 
Hugs. Hang on you’re nearly there. 

Thanks Hazel I thought I was doing ok until this burning pain started on my tongue. I coped with not swallowing food as everything tasted salty but now even water burns my whole mouth and it’s really made me feel down. Just trying to remove phlegm with a cotton bud on my tongue made it bleed, is that normal with RT too? 
This support group is so helpful when you think you’re alone and start panicking over symptoms that may be the norm. Xx

Thanks Dani, both yourself and Hazel have given me some good guidance as I’m feeling very down this weekend because it’s the worst I’ve felt. I will try to stick to using the rig although the swooshing of the liquid in my stomach makes me feel very sick today but I suppose you get used to it xx