I hope everyone is enjoying a lovely Easter weekend with family / friends!
Unfortunately, DH is not coping well at home, really. The bed isn't working out, he can't get comfortable. It sags and twists his back which is where the liver pain is radiating. He's back on the couch which we learned before he went into the hospital may be good for a night or two at best.
Pain comes and goes but we cannot get the nausea under control at all. Rx meds for nausea and one for digestion aren't working, gravol, tums, pepto bismol. Nothing seems to be touching it. He barely eats at all. Has managed most of a scrambled egg today and two bites of toast. Yesterday seemed a bit better but now its worse. I have a call into the home care team as of 9am today, but no response so far. This is fairly miserable. He said today, he wonders how long after treatment begins that any mass / lesions will shrink and he'll feel better. No idea what to say to that...and on it goes. Today, I'm afraid of what lies ahead if it's this bad just at the beginning.
I have been reading this thread with great sadness for you.
Tuesday marks the 3rd anniversary of losing my Mom to an aggressive lymphoma. So this sounds, unfortunately all too familiar. Near the end, my Mom developed a large tumor in the set of lymph nodes on her back. Which meant she spent her final 3 months in a lot of pain, which caused nausea and the lack of eating. And then it was just an agonizing slide. She was eventually put on a Fentanyl patch, but the dose that let her stay awake wasn't enough, so we had to supplement with morphine. The next higher dosage...well, she went to sleep and after 36 hours, she was gone. I wish we would have known that that would happen, because it meant we never really got a final goodbye. I felt it was hard to get direct answers from her caregivers because A. Positivity is a real key for fighting, B. I think most people react badly. So I felt like we weren't prepared for what the end would look like, and the timeline on how it unfolded. So I feel the need to mention this because I think people should be prepared for all eventualities. Be positive 90% of the time, but the other 10% should be a hard look at the real chance that this may be the best day of the days remaining and thoughts to what comes next. And it absolutely sucks.
Do you have a recliner, or a friend or family member with one they could deliver to your house for your husband to try? Before my Mom, was in the hospital, she slept in the recliner a lot, because she could arrange pillows in a way to avoid putting pressure on the tumor. I wouldn't go out and buy one, because all unknowns. But if you already have one, or can get one easily it might be worth a try.
I also have to say. If there are any family or long-time friends who don't live in easily driveable distance that you should consider asking if they want to come. We almost waited too long for my Grandma and my Mom's brother and one sister to come. I felt really bad for her brother, because they were messing around with her pain meds, and so his last memories of seeing his sister were during a state of delirium. If we had known, there are a few other people that would have liked to come. And if people can't come Skype is a really great tool. And unfortunately consider, don't wait too much for a day he's feeling better...because it may not come.
As for treatment. Relief can come fast. With my Mom's cancer one of the drugs they used is Rituxan...it melted the tumors away just like that. As in like 2 days and she was feeling a thousand times better, and in 10 the tumors were essentially gone. But unfortunately, the drugs they gave to cure the cancer didn't work. My Dad saw the improvement due to the tumor shrinkage and thought that meant she was getting better, but they aren't the same thing. And unfortunately, the relief wears off too. The last course of Rituxan only gave her relief for about 4 days, and the tumors came back larger than ever. I don't know if your husband's treatment will include that drug or if he will respond to it. But I hope that he will respond to treatment at least enough to relieve the pain and make each day better than what you are dealing with now.
All the luck I have, I give to you.
