head and neck radiation for oral cancer - how to eat when food is blah (no taste)

Hi Karo

I looked on eating as part of my job in this process. It still wasn't easy but I basically broke down the process and took out the bits where I could be responsible and in control of what was happening to me. Food was one of those things aswell as self care of my mouth and skin etc.... I made it my job to eat 3 times a day at least and just focussed on things that I could get down rather than taste. It isn't all that much fun but at least I didn't lose too much weight. I found eggs to be good aswell as pasta in soups. I would make savoury omelettes with some vegetables in it, plus yoghurts etc.. as Rodney has stated. Soups are another good thing also.

Julie

Hi Deb and T, I wish I had found this site before I had treatment for my tongue and neck cancers. Like you I was very bewildered by the whole process and found that any little thing that gave me a sense of control was important.
Here's a bit about my experience.
I asked for a tour of the treatment rooms and was shown the whole process from beginning to end before my first treatment. It demystified it for me. Over the course of the treatment my nurse gave me cream for the burns - as specified by my doctor. Different doctors have their preference but I must say that over the course of my 7&1/2 week treatment my neck did not burn too badly. I wore soft scarves and low cut tops to keep the area from being rubbed. After the treatment the area is still very tender for 2 -3 months and I used aloe vera which helped immensely. I also drankaloe vera juice after the treatment.
In terms of burning inside the mouth and throat, I drank lots of soda water and the doctor gave me liquid painkillers. The radiotherapy changed the consistency of the saliva during treatment. I found that the bubbles helped to break it down so I could swallow. The radiotherapy also affect my remaining taste buds and I had a lemony metallic taste for much of the time. This made me feel quite ill but once I mentioned this to the nurses and the dieticians they gave me medication for the nausea. I lost a lot of weight but I looked at eating as my job - I could control that. I found soft foods like ice-cream, mashed potato etc impossible to eat - largely due to my changed tongue. Contrary to most people I found that harder foods like toast and dry biscuits, chewed and quickly with a mouthful of water much easier to get down. I also found the taste of bananas quite pleasing. I ate lots of tofu and I drank the horrid Sustagen.
During the treatment I didn't work at all. I had the neck dissection and had to wait 6 weeks for the skin to be flexible enough for the mask to be fitted and treatment to start. I probably could have worked during the first few weeks of treatment but by the 4th week I was basically sleeping all day except for treatments. Everyone is different and my tiredness was probably exacerbated by the two surgeries I had had just prior.
I guess the main piece of advice I would give is that you should communicate with your doctors and nurses. The are wonderful people and will do everything to make you feel as well as possible during your treatment.

I hope this helps. I'll be thinking of you during your treatment.

thank you all so much for your invaluable information and support,
as you all know this is a very scary time for both of us, and Terry has had 2 of 30 treatments so far, i have started taking photographs each day to monitor the site, as the site is quite extensive reaching from the top of his left ear right down to under his chin and across almost to his nose. the marks on the mask are quite terrifying when you see them, but we both know its a means to an end and we are hopeful that we will have a positive outcome after this is over.( after all we do have a wedding to plan ) )

so the information we have from all of you has been very helpful to both of us.. thank you again and we will be trying to keep in touch and offer our experiences here on the forum for others who may be going through this as well... our very best wishes to all of you going through this struggle and to all of the wonderful family and friends and carers who help us through,
love and strength to you all;
deb and terry

Hi Tony,

The return of saliva and taste buds depends on your treatment. I had part of my tongue removed and some of my salivary glands were affected by this surgery so they will never return to normal. During radiation the remaining taste buds were affected but I think they returned after 3 - 4 months. I ate strong tasting foods which seemed to help make it a little more interesting. I saw a speech pathologist who taught me to swallow while I was in hospital but I still have trouble with soft or gluggy foods. I found that drinking water whilst eating made it easier - in fact I always have either water or a 'dry mouth' spray with me. There are also dry mouth chewing gums on the market if you can chew gum.
4 1/2 years on I don't really notice the difficulties with my mouth. I've become used to them and the little things I just automatically do now to make it easier.
I hope this helps - and I hope you improve quickly.

Cheers

CJF

I also had a large part of my togue removed replaced with a skinflap from my left arm. I had a 6 week course of radiation.
After the second week I was back in hospital due to weight loss.
Swallowing was very difficult for me due to sore throat.
I made sure that there was always plenty of cream on my neck, and they would wrap you in glad wrap to keep it there.

I always had food that was well cooked, usually steamed.
It all tastes the same for a long while.
Putting lots of Gravey on meals helps.
The gluggy saliva will eventually pass.I had to avoid spicey foods as they would also burn my throat.
Care must also be taken with the temperature as well, not too hot.
It is 11 years now since my surgery.

Hiya unclet,

Welcome and apologies for the late reply ... working incredibly long hours these days and not always having internet.

I still suffer from not much saliva and my taste buds are back most of the time. THere are still some things that I cannot taste or the taste has changed for me. Most fruit these days is just sour, hence I don't bother much with it other than peaches and bananas.

Feels like forever when you first finish treatment. I hope you start to notice some small differences in your saliva and taste issues and soon. I used to experiment with things like vegemite and of course the experiments depends on what your mouth can tolerate. I still don't do chili or anything too spicy and hot these days and I am heading for two years since completing treatment.

All my best

Julie