Ellen,

As a patient, I went with "Hope for the Best/Prepare for the Worst." Treatment was a struggle but I never stopped walking or caring for my pets as usual, never needed to be hospitalized during treatment (other than the surgery part), and was able to at least mitigate the worst of the side effects. It can be done! And the best piece of advice I got was, "Do what the doctors tell you to do." So I kept walking, I made sure I got enough calories, I started taking painkillers before I really needed them, I made sure I reported anything weird that was happening and stayed ahead of the side effects as best I could. Some things can't be altered, like the horrid mucus and then the dry mouth, but much of it can be, like the nausea.

Taking each day as it comes is the approach that worked for me, for sure.

Hi David,

Well that is what I expected to hear. I don't think that my husband will want to hear it but I will prepare for the entry into the tunnel. He does have a tube and so I hope to get more calories into him that way. He has been drinking lots of fluids but I know that he has to do more after the chemo. He did fine last time but that was only the first. I will do my best to keep him hydrated but it is hard to be in the role of caretaker and nag at the same time. I thank you for your honesty and will brace myself for the days ahead.

Ellen

Ellen,

The tube can certainly be useful as the pain increases but make sure he swallows each and every day to keep those muscles active. They have the ability to loose their "memory" quickly and some patients never regain their use post Tx.

David. That is definitely the plan. He really does not want to use the tube much for that very reason. I know the docs are concerned about his weight. Did you lose a great deal? Thanks for responding so quickly. It helps me to have the connection.

I was a bad patient so don't go by what I did, just what I say do! lol I lost appx 30% of my total body weight and couldn't afford to loose a pound. I was scary thin at the end and it took a good year before I could even think about gaining a pound no matter what or how much I ate. Now I am back to being able to gain weight as fast as you wouldn't want.

Ellen - my husband found that my blender contoctions were generally easier to get down that the canned products - the difficulty with the canned products is that they leave a residue in the mouth. Ugh. See if you can get a referral to the nutritionist so you are sure he is getting the nutrition he needs. I use both dairy and soy-based products, with a packet of Carnation Breakfast Essentials, and some extra whey power - but review with your doctors!!!
Besides general health, weight loss is an issue because if you lose too much, the radiation mask will not fit properly, and they may have to replan the IMRT.
When my husband was going through his therapy, I thought in terms of a week at a time - and I marked on the calendar each radiation and infusion - one more down, less to go!

I agree with everyone above for the weight loss. Martin also got scarily skinny. He got so weak that he fainted in the kitchen while trying to get the porridge. He fell back, the kitchen table broke his fall but he broke his ribs on the radiator. He came to on the floor and felt some liquid on his body, but he was so dazed he couldn't see. So he crawled back to the bedroom, grabbed the phone and called me on speed dial. He thought he was bleeding but as he was naked he felt too embarrassed to call the ambulance (silly). Anyway I interrupted a board meeting at work and rushed home, and the liquid was milk not blood. Anyway I helped him get dressed and he had his ribs X rayed. All of that because he couldn't eat towards the end and refused the tube for so long. So I would still use the tube, but also as David says still swallow to keep the muscles active. I had some high calorie powder I used to try and sneak in, but he always knew when I did. Dairy products are the best for weight gain too.

Thank you everyone. We were weighed today and his weight is holding. He is thin but still reasonable. We are only halfway through treatment so it is imperative that his weight stays stable. We will use the tube but swallow too. He eats a ton of dairy seems to appeal to him at the moment. I will keep nagging him to drink and swallow. Wish us luck at second chemo on Friday

I wish I could have "forced" Ron to drink more water and eat more cals but some men are just a tad bit hardheaded. Ron did very well with his Radiation, he didn't have chemo this time, but had it when he had Non Hodgkins. Different forms I'm sure. But he drove himself to and from radiation 45 mins give or take 5 days a week. Worse that he hated was of course the burns in his mouth but being tired all the time upset him because he is always doing something out in the yard when the weather is nice and he had to sleep most of the day and always apologized to me for it and I didn't care at all. I told him it helped him heal so do it. But doing the baking soda and salt rinse is a good thing and yes making sure eating and drinking, Ron had a feeding tube BUT he pulled it out twice! And the final time he would not go and have it put in, it hurt his throat more. And yes, not bad the first week or 2 of radiation but by the final 2 wks it was bad and yes 2 wks after the burns still burn. Around then the turn around should start happening. Ron lost a ton of weight during radiation because he wouldn't eat anything, and couldn't he said. I was sooo worried about him, I swear he looked like a starving person and I was so scared for him and his health and his heart, cuz you starve your organs when you do that. I was so beyond myself I called his Dr's office and cried for them to help me get him to eat, he went there and all it did was make Ron mad that I had called the office. They must be used to seeing this happen and just made sure he was OK. It's damn near scarey to see your loved one go thru this and look like that. BUT he got better not fatter but better! I came on this website to "listen and learn" from everybody's past and present experiences and Ron sounds like your husband. He didn't want to know, BUT when he said this or that was happening, I told him I knew it would and it's OK it is supposed to happen. So just keep informed and this way it won't be a surprise to you when things happen to him and you can explain to him it's OK, it is expected. Good Luck!!

Good luck for Friday's treatment.