Well I am in to my last eight days of radiotherapy and thank god.I have now not eaten solids for over three weeks.Mainly Fortysips and calogen.

The pain is being contained through a range of drugs which I take 3/4 times a day.One of the worrying considerations is are the pain killers doing me any harm also?

I am dreaming of food ,any food and during my time off am watching UK food programmes like some dememented madman.I particulary like Tamsim Day Lewiss and Anthony Worrell Thompson

The side effects apart from the pain has been awful mouth odours and weight loss.The former even after taking all the recommended dental mouthcare products.Sleeping at night is sometimes uncomfortatble as a residue builds up in your throat which is difficult and painful to clear.This is caused by swelling at the back of the throat.

My neck and cheeks are very red but I am applying cream to keeps that under control

Anyway I am feeling very positive about how things are going regarding beating this and the effects of the treatment are small considerations .

All the best to everyone on here and a special thanks to my wife Lorraine.I could not get through this without her.

Hi Robert,
Glad to know you are doing well. Try to keep your food intake up if possible. It really is part of the recovery process. I didn't eat for a month to 6 weeks after my radiotherapy and chemotherapy, because of a constant feeling of nausea. My consultants were concerned at my first consultation after the treatment because I hadn't healed as well as they had expected. I then tried the steroids I was given after the chemo, and this cured the nausea, and I started eating again, and started healing again. The body needs the building blocks to repair the damage the radiotherapy is doing.

Some people have had difficulties because they got addicted to the pain killers, and some (myself included) had no difficulty at all. I think that if you are medication where you can control the dosage, then you will only take as much as you need to control the pain. When this starts to ease then you will easily reduce the dosage. My husband and sister were concerned that I would become adicted to the morphine, and I was very easily led whilst taking the morphine, so I attempted to cut it down. After my husband heard me crying from pain in the middle of the night, he realised that I was taking the morphine because I needed it, and told me to take as much as I needed to dull the pain.

I can't offer any advice on the mouth odour problems. I don't know if I had any mouth odour issues, if I did then nobody told me about them. Sleeping will be an issue. I used to get up at 4 in the morning to take more pain medication (oramorph). I did ask the doctors if I could have something stronger, that would last all night, but they were concerned that stronger medication would be addictive, so I stayed on the soluble morphine. The only problem with that is that you don't know what to do with yourself when you wake up in pain, and the medication takes a while to work. I used to empty the dishwasher and clear up the kitchen, because I found that doing manual tasks would take my mind of off it. I found that sleeping in cold air really made my throat hurt, and last year we kept the summer quilt on the bed all winter, and the heating on about 18 degrees all night. This eased the problems with the sore throat overnight, and you could try this to see if it helps. I think other people have used the humidifiers you can get for children with croup.

Keep a careful eye on your skin, I neglected a small area behind my ear, and the skin here became infected, and very sore. However my face and neck have now fully recovered, and I really am starting to look like myself again.

It sounds as if you are doing well, congratulations it is a very hard process, and I have been thinking of you.

Hi Robert,Keep going keep smiling! I lived on fortisips for about 6 weeks and I know i smelt pretty bad! I felt as though the odour was coming thru my pores too!.It is very important to keep your water intake up. It does help a bit with the smell!. I was very up beat in my last week of radio even though I had chemo at the same time. Unfortunately I was then very disappointed that I didn't immediatley feel better once all my treatment finished! My skin and mouth continued to burn for a long time after which my doctors said would happen. But mentally i did find the first couple of weeks hard. The mucus got particularly worse but I slept propped up and just dealt with it during the night, mornings as i got up were the worse. I soon learnt not to have a fortisip first thing!
I didn't have any pain so that issue i can't help you with. I didn't have any painkillers after my neck disection and tonsilectomy either!
The only thing I used was soluble aspirin with glycerol just before i ate. That helped the food go down a bit better!
It is now 5 months since i had my op and I have a go at eating everything now. Potato, bread and pasta are very tricky and i do tend to avoid. as I have very little saliva. I have changed my eating habits i now eat a little and often. I eat alot of eggs (i never touched them before)but they do go down easily!And likewise with fish (I never ate that either!)Salad has a lot of water content so that is nice to eat too.
I still have my moment when I gag - usually when i try to eat too fast to keep up with my family. I have a house full of teenagers who bolt their food and go off to the next event as quick as possible.
It does get better but it takes a while. Good luck with the rest of your treatment

Anne

HI Robert!
All I can tell you is that it WILL get better! When your treatment ends, there will be some time until your recovery begins (for me it was about one month until I could get my ng tube out and start eating again!). Be aware of the thick mucous-there is medication called mucodyne that will lessen the effects (this was the biggest issue I faced after RT/chemo). Eating is very personal; try everything that you can-one week you won't be able to touch it, but the next, you'll love it. Your taste buds will come back.....It all takes time.....Remember Don't Surrender!!! Mike

again
thanks for all for the comments and support.I find then most helpful.You may not know but I was not fitted with a tube.The oncoligist was not keen on this for me as he thought my side effects had gone too far.Also he suggested in my case that my recovery from the treatment might be prolonged if I did not make real efforts to get nourishment down my throat.


I now weigh about 74 kilos which is 11 down on my starting weight.I do not feel all that bad though

Robert,

I also did not have a tube fitted. The only reason that I stopped eating was because I had awful nausea after the radio/chemotherapy. It helps to be really careful about what you choose to eat, and time it well, i.e. about an hour after you have taken your pain medication. I found the tubes of fromage frais were great, as they slid down easily, and I ate a lot of pasta in cheese sauce and supernoodles. The instant stuff that you make by adding boiling water, as it was just so quick and easy, and if you are only really eating for the calories, not for the taste and enjoyment, then what does it matter! The fortisips are great too, so keep trying with them, and also any other milkshake you can buy or make. We used to pick up a milkshake at mcdonalds on the way back from the hospital. That was great because the cold numbed my throat, but it did take me an hour to eat it.
Do keep trying to eat Robert, it's really important to the healing process.
Good luck
Jenni

Hi Robert

You're nearly there, so keep being positive and as these other good people have said - it really does get better, although sometimes it may might not feel that way when you're going through it - and your Xmas dinner may not be what you've been used to this year. I am only mentioning this as I was in a similar position last year, when my Xmas dinner consisted of a milk shake (and not even turkey flavoured).

One year further on, it's one of the things I have to look forward to (there are many more).
I too didn't have a tube or PEG fitted and also had to make myself take the liquid nourishment (I used "Ensure" for 6 months after my last radiation treatment) as I, too, lost a lot of weight during my treatment (I am now 15kg less that I was before my treatment - but saying that - I feel great and have to admit I was over weight before )

Anyway, what I'm trying to explain is that (sometimes) it all works out well. It will be interesting to read your post this time next year.

I wish you the strength to get through the rest of it!

Cheers - Pete