After treatment what now??

Hi Cupcake. Fir me week 3 I started to eat orally and had the n g tube taken out. It wasn’t easy and mostly  it was the ensures that kept me going. By 6 weeks another corner was turned thrn again around 12 weeks post treatment. The rough gums  and mouth ulcers stayed  around a while in fact I still get the odd mouth ulcer. What helped  me was slowly returning introducing foods snd for a  good  while forgot  3 square meals a day I was often having 6 small meals . Porridge was a good standby along with poached eggs. The majority of my calories came from the ensures for the first few weeks. I have various tips on my blog that may help. 
I also found gelclair invaluable for mouth ulcers and still di plus bioxtra mouthwash is the only one I find I can use  both are on prescription.

There’s also an excellent article online by Dr Peter Harvey 

www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdfHope this helps 

Hazel x

Hi cupcake. I had my NG tube in for six weeks post RT. My mouth and throat took weeks to settle to bearable. By six weeks I was feeling much better and by 12 I was definitely in the mend. These 6 and 12 week milestones are fairly common. I didn’t feel my old self for a year but improvements came in leaps and bounds sometimes backwards though. 
At three weeks your RT effects have only just peaked so give yourself time and try soft bland foods one at a time. Your mouth might feel trashed but you might be surprised at how easily something soft and slippery goes  down. Try a poached egg or tinned peaches for a start. I ate tins of macaroni cheese which were ok too. 
You might not taste them for a long time but they will get your mouth and throat used to food. At 12 weeks I managed a steak. 
Best wishes 

Hi

I'm 10 weeks out of treatment and have been surprised how quickly things get better.  Each week I look back and have seen progress.  I had veggie shepherds pie for dinner and chocolate cake, with lots of water.  If you'd have told me that at the end of my treatment I  wouldn't have believed it as I was completely reliant on my RIG. You have to keep trying. Keep the pain relief going, it helps with food.  Start with milk, yogurts, weetabix. 1 spoonful turns into 2, which turns into 3. You'll get there. 

Thank you. 

Thank you, I think I need to put my big girl pants on and just make a start on trying different foods. 

Good to hear that you're back onto normal food. I'm still relying totally on my PEG. I'm feeling so apprehensive about food but I think most of my problems are in my head. 

Thank you for your advice. 

It’s a hurdle to get over. I know Huw you feel. Just try. You’ll surprise yourself and be eating sooner than you think. 
Are you doing your swallowing exercises?

Just looked at my food diary for around 2-3 was post treatment.  I was having sips of milk every hour. I ate pannacotta,  creme brulee and milk shakes, peach yoghurt, although not necessarily the whole thing. The Bonne Maman caramel pannacotta where bearable and relatively high in calories.  I would have iced lattes too. I love coffee and really missed it during treatment.  I tried foods that the family ate. I was told it's important to have meal times and eat with others as that will make the hormones that regulate your appetite kick it. TBH sometimes my meal was a glass of water!! 

Eating is painful,  that's what makes you not want to do it. It will get better.  

I'm at the same stage as you Sep 17 last RT  and feel exactly the same. Taking a few days just to heal the ulcers to get back on it.  Take Care

Hi JMango

I had a very productive appointment today with the speech and language team. Had a great chat where we discussed my fears and concerns about food and where we came up with a strategy with achievable goals and targets. I left feeling really positive. I came home and drank a glass of milk which made me feel ridiculously happy!! They also encouraged me to sit with the family at mealtimes to try and get some normality back. I'll report back in a couple of days abd let you know how I get on.

Take care.