JudyB

Lddaughter, We are going through this exact thing right now, severe pain, pain meds and side effects, lethargy/ constant sleeping, no appetite. Every symptom you mentioned as well as vertigo that makes it impossible for my husband to walk on own. Also oxycodone. He can't take advil, his preference (?), because his kidneys were severely damaged during a trial so it's oxy or nothing. He has decided on nothing. His oncologist has ordered radiology on two of his sites- one is a rib that his cancer has invaded with another mass directly against it pressing the kidney. Another is a very large protrusion in his abdomen that makes dressing in anything other than loose sweat pants impossible. He walks slowly, small steps, holds on to anything he can for support. The oxy is not completely out of his system yet, so today has been tough, this last week has been the worst since his diagnosis. I feel he is "gone" already, when he is awake he is in so much pain it's terrible to have to watch him suffer. I try to get some nutrition in him every two hours during the day, he's losing so much weight. If I continue very small amounts he usually does alright- fruit, broth, Ensure, Gatorade, etc. Don't let him dehydrate- he ended up inpatient on IVs once. He continues his Yervoy, one infusion left, although we know it has failed by what we can see. In the morning I take him to radiation to get the initial set up for his treatments, he will have five, and I am praying he does get at least pain relief. We've been asked about using CBD oil, we haven't yet, but it's not out of the question, some people claim they've gotten relief using it. Oxy hasn't been a good experience. Although he is stage four and progressing rapidly, neither of us want what time he does have to be spent either sound asleep and unaware, or awake in an agony. I know this is probably rambling- it has been rough and I've had many private melt downs lately. It does sound like your mother and my husband are experiencing much the same. (OH, oxy also gave him headaches as a side effect.)

Thank you for your prayers, and I'll do the same for your mother and you, as you struggle in your reverse roles. It was tough for us, we've had two years to get some communication going (the doctor, social worker, and nurses helped tremendously), and begin understanding what has to happen and when. The diagnosis it tough to accept- my husband was in denial for months. So I was reading and asking questions, digging everywhere for whatever information I could find and what to expect. All the while he was telling everyone he was just fine, doing great, couldn't be better. And then he'd collapse in private, for me to pick up the pieces. I couldn't reach out for help and form a support system without betraying his confidence and saying he was not fine, but very ill. And I was in need of help. It came to a head, as it had to, and I gently explained to him that while I repected what he needs, he was not doing the same for me. After a good give and take we both were able to work together, he finally allowed me to care for him instead of stubbornly refusing me, being too weak to do for himself, and then dealing with the miserable results. He knows that he must have some fluids and nutrition, we spoke with a dietician at the hospital to find out the best and easiest ways for him to get what he needs without eating large amounts (he can't). So I'm not "torturing" him, I'm his partner and we're dealing with this together. Help him walk, tuck him in, prop him up, and let him do for himself on his good days because that is a celebration. I make him laugh when I can, I always have, hold his hand, rub his back, chide him when he's not giving his all (there's no crying in baseball- one of his favorite lines from a movie ever and it makes him smile and get right back on track). He does want my partnership now, which is my help I guess, but also my listening, my talking, my gibberish about gossip and politics and animals- we've always working in animal rescue. The latest thing I set fire to in the kitchen always amuses him. And sometimes I go in the guest room and cry like a baby, or the car. The bathroom. Today it was the grocery store in front of the bread. Just hit me out of the blue, he loves this stuff and I never have cared for it, and how long before he won't be making sure I bought it for him when I get home? Then I dry my eyes, pull  it together, and get on with it. Far from ok. I think we each come up with our own mechanisms but the melt downs must be unanimous. We have to do what we know we need to, see things we never dreamt, live it all, and I tell myself, "Judy, it is a wonder you're not as strong as everyone says you are." Yep, easier said than done.