Hi Pam,

I had the same fights with my husband all through. I believe until the patient gets hit with problems like taste changes, weight loss or swallowing pains during radiation, he/she can’t really comprehend what it’s going to be like. My husband did not read up on anything about his treatment at all and when he got hit by the side effects, it was devastating for him. John loved jello and when swallowing got harder for him, I suggested getting him some jello as a treat. He was happy about it. However, he threw a temper tantrum when he realized the jello tasted metallic to him and it was not at all what he’d imagined it to be. Another time, using a recipe I got from the hospital dietitian, I made him a Moroccan dish, which he thought he would like. But when he realized it had to be blended so that he could swallow it, he simply refused to eat it. At Christmas, his MO gave him permission to drink two glasses of red wine, but it turned out to be a total disappointment to John because the wine at that point tasted like sour grape juice.

It was very frustrating to me because, like you, I tried everything I could. John thought he could waltz through the treatment and go back to his old life. He was a big and strong guy, so not being able to impose his will on his own “weakness” upset him to no end. He would tell other people that I was quite “knowledgeable” (actually from reading the posts on this forum), but it did not make him any more co-operative.

I am not minimizing your effort, rather, I just want to say that i’ve been there before and I can empathize. I understand how hard it can be. The hard part about caregiving is not the physical work, it’s the emotional support that we have to give, and at a time when we ourselves feel we need emotional support big time. That’s how I saw it.

BTW, do you have a Waterpik? Using the tongue scraper attachment on the lowest setting with a capful of magic mouthwash mixed in with the water does wonders for removing the sticky saliva. I learned this from reading posts here. John used to say it was the best investment we had made.

Do keep posting, even if it is just venting your frustrations. We will try our best to support you.

She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.