-Well yet again you guys have come through with brilliant support and advice.I did liquidise dinner last night and he a ate some but not very much and when i asked him why? he said he had had enough.What do i do in answer to that?I felt like crying to be honest,something that i feel a lot when he wont do what i suggest or ask is that selfish?I spend my day trying to think of things to feed him and they end up in the bin and i just feel like i have my children back at weaning stage again.All i need is for him to tip his plate upside down on his head !!!
And then this morning ,just like my little boy used to, he sat on the edge of the bed and said look Liz and pulled his bottom lip down.The skin on his lips has all peeled of and the inside of his bottom lip looks like chopped liver.I feel such a cow now.
the postman has just delivered a biotene dry mouth care system that i ordered on line and some mouth spray so i will read the litreture and see how it all works,but will speak to the radiologist about his lips this afternoon.I am going to make a big pot of soup and a beef casserole today and see how we get on and most of all try to remember that this about Rob and not me lol.
see you all tomorrow(i guess you are all in bed as i write this)
love

Liz - Not all of us are in bed at this hour, and I can really feel your frustration and worry. My son also started to get the effects of the radiation very early on. He spent most of the time sitting cross legged on the bed, staring at the bowl of chicken broth before him on a tray, and after only a few sips he was finished. It is so hard to know when to push and when to hold back a little or when to just give him a gentle hug. I learned not to make too much of any one thing because I never knew when his taste would change and when he couldn't tolerate a certain drink or food anymore. There were times when he would get irritated with me, telling me I didn't understand what he was feeling. He said that trying to swallow was like sharp knives stabbing his throat. Liz, keep trying and make sure he gets enough water. I know it is so difficult to see someone you care about going through such pain and feeling so helpless especially when it looks like they are not really trying. The biotene should work - I've read lots of good about it. And make sure the doctor knows what is happening. At one point, my son said he was going to take a couple of days off from the treatment but I convinced him to at least see the doctor which he did and the doctor, after seeing his throat, put him on a week long break. It is better not to have to take a break but it did give him a chance to heal a little bit. You have gotten lots of good advice above. JoAnn mentioned setting up a schedule and that's what I did. I put a chart on the refrigerator with times and how much and what liquids he had and I insisted he write down everything he had. Keep trying - one day it will get better! You take care of yourself, too and keep us posted.

Liz,

You really have no appetite when your mouth is sore, your skin is on fire. your throat hurts, you feel tired and mentally you are battling this cancer demon.

That said...it is nevertheless exremely important for him to understand that if he doesn't swallow 48ozs of water and 2000 cals minimum a day things WILL get much worse, even spiral out of control to the point where he will end up in the ER to get fluids. It also doesn't take long for that to happen. His body is being attacked by cancer and his body is being attacked by the radaition. He MUST give the body it's food and water to fight back.

I should know, I ended up in the ER 3 times during Tx even though I had been warned and had a wife like you that nagged the crap out of me. Maybe you can convince him to be smarter than me and not put himself through additional and totally unnecessary torture. Please get him to read this post and if he wants to e me tell him I'm here to help him not make his life more complicated.

Hi Liz,

I think when he says he's full he really might be and what I'd do with Jack was going back to the total amount needed during the day. We just tried it again a little later. It's not possible to eat the same amount as he always did at this point, but he has to switch his thinking over to small amounts taken more frequently.

It's also about packing in as many calories as you can in those small amounts. Even if he's not listening to you about having a schedule, keep at that because it gives him control if he can decide when and how much to eat - as long as at the end of the day he's somewhere near his total amount.

You and Rob are a team here and it's not easy to be either a patient or a caregiver. You both are seeing this from different perspectives - and that's the point. He can't be left to just ignore the basic routine that will get him through these treatments and you can't decide for him. So we all struggle to find the right balance on when to push and when to back away. If there was an easy answer to that then none of us would be posting.

Be patient but realistic on how serious the side effects are from not getting enough water and food. Jack ended up in the hospital with an infection towards the end even with me hovering all over him. You can't prevent every bad thing from happening, but being creative in getting in enough attempts at eating and taking water during the day is one we at least have a good shot at.

Regards JoAnne

Cookey, and anyone else interested: A year ago I found the following websites and got some very good info on high calorie, easy to swallow, easy to blend in a processor, recipes.
http://rex.nci.nih.gov/NCI_Pub_Interface/Eating_Hints/eatdiets.html
http://www.cancer.org
http://web.cancernutritioninfo.com
http://kidshealth.org [look for recipes for kids with cystic fibrosis] high nutrition recipes
Also, the University of Virginia Health Center has a Digestive Health Center section with High Calorie Liquid Diet recipes and hints.

I still have about 100 pages of printed recipes and hint that I would be happy to mail anyone who wants them. Amy

There were tears this morning i am afraind ,and they weren't Robins.Is it unusual for a carer to feel totally useless and not valued at all?We have reached a stone wall where Rob is saying "its my cancer and i will do it my way"He wont even look at the products i have got ,he considers fighting it to mean "the doctors told me this would happen so why are you stressing about it"he justs believes he has to suck for it.He didnt tell the radiographer his lips and mouth are burnt ,and when i asked why, he said "they told us this would happen"I spent the whole day yesterday making stew and casserole, and fresh soup to put in his flask for work,and this morning he went to work with a packet of cup o'soup which is just processed crap.
The thing is he knows he is hurting me by rejecting all my attempts to help,and undermining my contribution,but he keeps doing it.Then all of a sudden he will try one of the things i have bought to help and come into the room and say" that new mouthwash is good love".I dont know wether to back off and let him get ill and then pick up the pieces or just live in a war zone.My gut tells me to speak to Dr Whitikar when we see him today and tell him that he is not eating and that his mouth is burnt .Its a trying time ,but he did manage a little dinner last night.

Liz - It is not at all unusual to feel totally useless and not valued. As CG to my son I felt that often. The "processed crap" that Rob took to work was probably his way of being in control and his way of coping or just something that he felt he could tolerate. At least he took that. And going to work is amazing! My son just started a full time job 3 weeks ago (almost 3 months post Tx) and told me he realizes that not being able to find a job before now was actually a blessing since he couldn't have been able to handle a work schedule any sooner. I made all kinds of nutritious soups and casseroles (and I am a good cook) but what my son ended up getting the most out of was the canned Campbell's chicken noodle soup. I felt replaced by a can of soup but I did manage to say "Wow! you ate 3 whole noodles this time. Maybe tomorrow you will be able to eat 6 noodles with the broth!" The next time Robin says "that ___was good love" hang on to that, jump up and down and yell "hurray"! When I found something helpful that could apply to my son's treatment on the OCF site, I would print out copies for my son to read so that it wasn't just me telling him what to do and I was overjoyed when he said something like "Well, that does make sense". Fighting and surviving cancer is a really rough road and so difficult for a CG to know when to back off or when to be firm but we can get through it and there are small successes along the way that we can celebrate. Celebrations are definitely better than war zones.

Today is a better day.When he came home for his treatment ,he told me he couldnt eat the packet soup because it made his tongue sting,so he went to the kitchen and warmed up a good size bowl of mine,and ate the lot!!!!His jaw stiffness seems much improved and his neuralgia seems to be responding to the tryptizol at last.Last night he ate beef casserole and two dumplings and then fell sound asleep.Treatment today was rearranged for 9am due to a linear accelarator breakdown so i will be interested to see how he copes with treatment before work.I got him to eat two poached eggs on toast before he left and he took a flask of soup so.....fingers crossed.Weekend off treatment now so a couple of days to see how he is feeling.

Thanks for those links, Amy! As I make the transition back to a person who can eat again, some of those recipes will come in handy...

Nelie